| 1. |
- Ljungman, Lisa, et al.
(författare)
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Sexual dysfunction and reproductive concerns in young women with breast cancer : Type, prevalence, and predictors of problems
- 2018
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Ingår i: Psycho-Oncology. - : John Wiley & Sons. - 1057-9249 .- 1099-1611. ; 27, s. S128-S128
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: A dearth of studies focusing on young women (<40 years) with breast cancer have hampered the understanding of the type, prevalence, and predictors of sexual dysfunction and reproductive concerns in this population.METHODS: Data were collected from 181 women (response rate = 60%) diagnosed with breast cancer approximately 2 years previously (age 21-39) using the Swedish National Quality Registry for Breast Cancer and a survey including standardized measures of sexual dysfunction, reproductive concerns, body image, and health-related quality of life. Multivariable logistic binary regression analyses were used to identify predictors of sexual dysfunction and reproductive concerns.RESULTS: Sexual dysfunction in at least one domain was reported by 68% of the women, and a high level of reproductive concerns in at least one dimension was reported by 58%. Model results showed that current endocrine treatment was a significant predictor of dysfunction related to lubrication (OR 3.8, 95% CI 1.2-12.1) and vaginal discomfort (OR 8.7, 95% CI 1.5-51.5). Negative body image was related to satisfaction with sex life (OR 1.1, 95% CI 1.0-1.2). A high level of reproductive concerns was predicted by a wish for (additional) children in the future (OR 3.4, 95% CI 1.1-10.2) and by previous chemotherapy (OR 2.5, 95% CI 1.1-5.9).CONCLUSIONS: Sexual dysfunction and reproductive concerns are common in young women with breast cancer. Current endocrine treatment, previous chemotherapy, a negative body image, and a wish for children in the future predict higher level of problems.
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| 2. |
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| 3. |
- Wettergren, Lena, et al.
(författare)
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Comparing two versions of the Schedule for Evaluation of Individual Quality of Life in patients with advanced cancer
- 2011
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Ingår i: Acta Oncologica. - 0284-186X .- 1651-226X. ; 50:5, s. 648-652
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Tidskriftsartikel (refereegranskat)abstract
- Background. The aim was to compare two individualized patient reported outcomes or the Schedule for the Evaluation of Individual Quality of Life - Direct Weighting (SEIQoL-DW) measuring quality of life in general, and the disease-related version (SEIQoL-DR) measuring quality of life related to disease. Both instruments have been used in clinical practice settings within oncology. The instruments were compared with regard to feasibility, the areas nominated by patients as important and patients' ratings of how they were doing in these areas (Index scores). Material and methods. The study included 40 patients with gastrointestinal cancer. All patients completed both versions of the instrument on a touch screen computer in relation to a medical consultation. Firstly, the participants were invited to nominate the five domains she/he currently considered to be most important in life. Secondly, they were asked to rate how they were doing in each of these domains. Finally, they were asked to quantify the relative importance of each area. Cohen's effect sizes were calculated to illuminate the clinical importance of mean value differences. Results. Both instruments took less than ten minutes to complete and the procedure was considered feasible by both patients and interviewers. The proportion of patients nominating the same areas in the two versions did not differ, however, the SEIQoL-DW Index score was significantly higher than the corresponding score for the SEIQoL-DR. The detected difference in the mean score measured by effect size was medium. Conclusion. The magnitude of the effect size of the difference in Index score imply that the two versions tap into different constructs, i.e. quality of life (QoL) versus health-related QoL (HRQL), supporting the construct validity of the two versions of the instrument. The SEIQoL-DW and the SEIQoL-DR should be considered as complementary rather than interchangeable when used in patients with cancer.
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| 4. |
- Wettergren, Lena, et al.
(författare)
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Comparison of two instruments for measurement of quality of life in clinical practice - a qualitative study
- 2014
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Ingår i: BMC Medical Research Methodology. - : Springer Science and Business Media LLC. - 1471-2288. ; 14, s. 115-
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Tidskriftsartikel (refereegranskat)abstract
- Background: The study aimed to investigate the meaning patients assign to two measures of quality of life: the Schedule for Evaluation of Individual Quality of Life Direct Weighting (SEIQoL-DW) and the SEIQoL-DW Disease Related (DR) version, in a clinical oncology setting. Even though the use of quality of life assessments has increased during the past decades, uncertainty regarding how to choose the most suitable measure remains. SEIQoL-DW versions assesses the individual's perception of his or her present quality of life by allowing the individual to nominate the domains to be evaluated followed by a weighting procedure resulting in qualitative (domains) as well as quantitative outcomes (index score). Methods: The study applied a cross-sectional design with a qualitative approach and collected data from a purposeful sample of 40 patients with gastrointestinal cancer. Patients were asked to complete two measures, SEIQoL-DW and the SEIQoL-DR, to assess quality of life. This included nomination of the areas in life considered most important and rating of these areas; after completion patients participated in cognitive interviews around their selections of areas. Interviews were audiotaped and transcribed verbatim which was followed by analysis using a phenomenographic approach. Results: The analyses of nominated areas of the two measures resulted in 11 domains reflecting what patients perceived had greatest impact on their quality of life. Analysis of the cognitive interviews resulted in 16 thematic categories explaining the nominated domains. How patients reflected around their quality of life appeared to differ by version (DW vs. DR). The DW version more often related to positive aspects in life while the DR version more often related to negative changes in life due to having cancer. Conclusions: The two SEIQoL versions tap into different concepts; health-related quality of life, addressing losses and problems related to having cancer and, quality of life, more associated with aspects perceived as positive in life. The SEIQoL-DR and the SEIQoL-DW are recommended in clinical practice to take both negative and positive aspects into account and acting on the problems of greatest importance to the patient.
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| 5. |
- af Sandeberg, Margareta, et al.
(författare)
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Does school attendance during initial cancer treatment in childhood increase the risk of infection?
- 2013
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Ingår i: Pediatric Blood & Cancer. - : Wiley. - 1545-5009 .- 1545-5017. ; 60:8, s. 1307-1312
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Tidskriftsartikel (refereegranskat)abstract
- Background The present study aimed to investigate the relationship between school attendance and infection requiring antimicrobial treatment in children undergoing treatment for cancer. Procedure A national cohort of children aged 7-16 years undergoing cancer treatment was assessed during two observation periods of 19 days each, 1 month (n=89) and 2.5 months (n=89) poststart of treatment. Children free from infection at start of each observation period were included. Multivariable logistic regression analyses were performed including factors potentially associated with start of antimicrobial treatment. Results Twenty-seven (30%) children started antimicrobial treatment during the first observation period. Factors associated with an increased risk of starting antimicrobial treatment were diagnosed with sarcoma (OR=24.37, P=0.002) or non-Hodgkin lymphoma (OR=17.57, P=0.025), having neutropenia (OR=5.92, P=0.020) and age less than 13 years (OR=8.54, P=0.014). During the second observation period, when 20 (22%) children started antimicrobial treatment, the probability of starting treatment was increased in children with neutropenia (OR=4.25, P=0.007). There was no statistically significant association between starting treatment for infection and school attendance. Conclusions In this study, children attending school while undergoing cancer treatment did not run a higher risk of starting antimicrobial treatment than children absent from school. However, there is a need for further studies evaluating risk of infections in children with ongoing cancer treatment.
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| 6. |
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| 7. |
- af Sandeberg, Margareta, et al.
(författare)
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Psychometric properties of the DISABKIDS Chronic Generic Module (DCGM-37) when used in children undergoing treatment for cancer
- 2010
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 8
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Tidskriftsartikel (refereegranskat)abstract
- Background: The aim was to evaluate data quality and psychometric properties of an instrument for measurement of health-related quality of life: DISABKIDS Chronic Generic Module (DCGM-37) used in school-aged children with cancer. Methods: All school-children diagnosed with cancer in Sweden during a two-and-a-half year period were invited to participate in the study. Analysis was performed on combined data from two assessments, two and-a-half and five months after start of cancer treatment (n = 170). The instrument was examined with respect to feasibility, data quality, reliability and construct and criterion-based validity. Results: Missing items per dimension ranged from 0 to 5.3 percent, with a majority below three percent. Cronbach's alpha values exceeded 0.70 for all dimensions. There was support for the suggested groupings of items into dimensions for all but six of the 36 items of the DCGM-37 included in this study. The instrument discriminated satisfactorily between diagnoses reflecting treatment burden. Conclusions: The results indicate satisfactory data quality and reliability of the DCGM-37 when used in children undergoing treatment for cancer. Evaluation of construct validity showed generally acceptable results, although not entirely supporting the suggested dimensionality. Continued psychometric evaluation in a larger sample of children during and after treatment for cancer is recommended.
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| 8. |
- Alexandra, Wide, et al.
(författare)
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Fertility-related information received by young women and men with cancer : a population-based survey
- 2021
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Ingår i: Acta Oncologica. - : Taylor & Francis. - 0284-186X .- 1651-226X. ; 60:8, s. 976-983
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Tidskriftsartikel (refereegranskat)abstract
- Background: Infertility is a well-known sequela of cancer treatment. Despite guidelines recommending early discussions about risk of fertility impairment and fertility preservation options, not all patients of reproductive age receive such information.Aims: This study aimed to investigate young adult cancer patients' receipt of fertility-related information and use of fertility preservation, and to identify sociodemographic and clinical factors associated with receipt of information.Materials and methods: A population-based cross-sectional survey study was conducted with 1010 young adults with cancer in Sweden (response rate 67%). The inclusion criteria were: a previous diagnosis of breast cancer, cervical cancer, ovarian cancer, brain tumor, lymphoma or testicular cancer between 2016 and 2017, at an age between 18 and 39 years. Data were analyzed using logistic regression models.Results: A majority of men (81%) and women (78%) reported having received information about the potential impact of cancer/treatment on their fertility. A higher percentage of men than women reported being informed about fertility preservation (84% men vs. 40% women, p < .001) and using gamete or gonadal cryopreservation (71% men vs. 15% women, p < .001). Patients with brain tumors and patients without a pretreatment desire for children were less likely to report being informed about potential impact on their fertility and about fertility preservation. In addition, being born outside Sweden was negatively associated with reported receipt of information about impact of cancer treatment on fertility. Among women, older age (>35 years), non-heterosexuality and being a parent were additional factors negatively associated with reported receipt of information about fertility preservation.Conclusion: There is room for improvement in the equal provision of information about fertility issues to young adult cancer patients.
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| 9. |
- Anandavadivelan, Poorna, et al.
(författare)
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Cultural adaptation and psychometric evaluation of the Swedish version of the Reproductive Concerns After Cancer (RCAC) scale
- 2020
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Ingår i: Health and Quality of Life Outcomes. - : BMC. - 1477-7525. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundReproductive concerns are common among young cancer survivors and include worries related to different aspects of fertility and parenthood. The Reproductive Concerns After Cancer (RCAC) scale is an 18-item scale with six dimensions, developed to capture a variety of such concerns. The aim of the present study was to describe the cultural adaptation of the RCAC scale into Swedish and evaluate its psychometric properties among young women who have undergone treatment for cancer.MethodsThe RCAC was forward translated from English into Swedish and assessed for cultural adaptation based on a two-panel approach followed by cognitive interviews with the target group. For the psychometric evaluation, a Swedish cohort of 181 female young adult breast cancer survivors completed a survey including the RCAC scale approximately 1.5years post-diagnosis. Psychometric properties were examined by analyses of construct validity (confirmatory factor analysis and convergent validity), data quality (score distribution, floor and ceiling effects), reliability and known-groups validity.ResultsThe confirmatory factor analysis yielded an acceptable fit (RMSEA 0.08, SRMR 0.09, CFI 0.92). Convergent validity was demonstrated by a negative correlation of moderate size (-0.36) between the RCAC total score and the emotional function scale of the EORTC QLQ-C30. Reliability measured with Revelle Omega total was satisfactory (0.73-0.92) for five of the dimensions, and poor for the dimension Becoming pregnant (Revelle Omega total=0.60); Cronbach's alpha showed a similar pattern. Known-groups validity was indicated by significant RCAC mean score differences (MD), reflecting more concerns among women with a certain (MD 4.56 [95% CI 3.13 to 5.99]) or uncertain (MD 3.41 [95% CI 1.68 to 5.14]) child wish compared to those with no wish for (additional) children.ConclusionThe translation and cultural adaptation of the Swedish RCAC has resulted in a scale demonstrating construct and known-groups validity, and satisfactory reliability for five of six dimensions. The dimension Becoming pregnant showed non-optimal internal consistency and should undergo further evaluation. The Swedish RCAC is recommended to be used in research settings for measurement of concerns related to fertility and parenthood in young women with cancer.
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| 10. |
- Armuand, Gabriela M., et al.
(författare)
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Desire for children, difficulties achieving a pregnancy, and infertility distress 3 to 7 years after cancer diagnosis
- 2014
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Ingår i: Supportive Care in Cancer. - : Springer. - 0941-4355 .- 1433-7339. ; 22:10, s. 2805-2812
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: The aim was to investigate desire for children, difficulties achieving a pregnancy, and infertility distress among survivors 3 to 7 years after cancer treatment in reproductive age.METHODS: Cancer survivors were identified in national population-based cancer registries. Eligible subjects presented with selected cancer diagnoses between 2003 and 2007 between the ages of 18 to 45. A postal questionnaire including study-specific questions, the Short-Form 36 Health Survey and the Fertility Problem Inventory, was sent to 810 survivors, and 484 participated (60 % response).RESULTS: Most survivors who had a pretreatment desire for children still wanted children 3-7 years after treatment, and this group was characterized by young age and being childless at diagnosis. In addition, a substantial group of survivors (n = 55, 17 %) that did not have a pretreatment desire for children had changed their mind about wanting children after treatment. About a third of the survivors with a desire to have children had experienced difficulties achieving a pregnancy after the cancer treatment, and an unfulfilled desire to have children was associated with worse mental health. Survivors presently facing difficulties achieving a pregnancy reported moderate levels of infertility distress and expressed low interest in using gamete donation.CONCLUSIONS: Health professionals in cancer care need to be aware that patients' plans for future children may change, particularly if they are young and childless. All patients of reproductive age should be provided with adequate information about the impact of cancer treatment on future fertility and fertility preservation.
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| 11. |
- Armuand, Gabriela M., et al.
(författare)
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Sex differences in fertility-related information received by young adult cancer survivors
- 2012
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Ingår i: Journal of Clinical Oncology. - : American Society of Clinical Oncology. - 0732-183X .- 1527-7755. ; 30:17, s. 2147-2153
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: The aim was to investigate male and female cancer survivors' perception of fertility-related information and use of fertility preservation (FP) in connection with cancer treatment during reproductive age.METHODS: The study sample consisted of cancer survivors diagnosed from 2003 to 2007 identified in population-based registers in Sweden. Inclusion criteria included survivors who were age 18 to 45 years at diagnosis and had lymphoma, acute leukemia, testicular cancer, ovarian cancer, or female breast cancer treated with chemotherapy. Of 810 eligible participants, 484 survivors (60% response rate) completed a postal questionnaire.RESULTS: The majority of male participants reported having received information about treatment impact on fertility (80%) and FP (68%), and more than half of the men banked frozen sperm (54%). Among women, less than half (48%) reported that they received information about treatment impact on fertility, and 14% reported that they received information about FP. Only seven women (2%) underwent FP. Predictors for receiving information about treatment impact on fertility were a pretreatment desire to have children (odds ratio [OR], 3.5), male sex (OR, 3.2), and being ≤ 35 years of age at diagnosis (OR, 2.0). Predictors for receiving information about FP included male sex (OR, 14.4), age ≤ 35 at diagnosis (OR, 5.1), and having no children at diagnosis (OR, 2.5).CONCLUSION: Our results show marked sex differences regarding the receipt of fertility-related information and use of FP. There is an urgent need to develop fertility-related information adapted to female patients with cancer to improve their opportunities to participate in informed decisions regarding their treatment and future reproductive ability.
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| 12. |
- Armuand, Gabriela M., et al.
(författare)
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Women more vulnerable than men when facing risk for treatment-induced infertility : a qualitative study of young adults newly diagnosed with cancer
- 2015
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Ingår i: Acta Oncologica. - : Informa Healthcare. - 0284-186X .- 1651-226X. ; 54:2, s. 243-252
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Being diagnosed with cancer constitutes not only an immediate threat to health, but cancer treatments may also have a negative impact on fertility. Retrospective studies show that many survivors regret not having received fertility-related information and being offered fertility preservation at time of diagnosis. This qualitative study investigates newly diagnosed cancer patients' experiences of fertility-related communication and how they reason about the risk of future infertility.MATERIAL AND METHODS: Informants were recruited at three cancer wards at a university hospital. Eleven women and 10 men newly diagnosed with cancer participated in individual semi-structured interviews focusing on three domains: experiences of fertility-related communication, decision-making concerning fertility preservation, and thoughts and feelings about the risk of possible infertility. Data was analyzed through qualitative content analysis.RESULTS: The analysis resulted in three sub-themes, 'Getting to know', 'Reacting to the risk' and 'Handling uncertainty', and one main theme 'Women more vulnerable when facing risk for infertility', indicating that women reported more negative experiences related to patient-provider communication regarding fertility-related aspects of cancer treatment, as well as negative emotional reactions to the risk of infertility and challenges related to handling uncertainty regarding future fertility. The informants described distress when receiving treatment with possible impact on fertility and used different strategies to handle the risk for infertility, such as relying on fertility preservation or thinking of alternative ways to achieve parenthood. The negative experiences reported by the female informants may be related to the fact that none of the women, but almost all men, had received information about and used fertility preservation.CONCLUSIONS: Women newly diagnosed with cancer seem to be especially vulnerable when facing risk for treatment-induced infertility. Lack of shared decision-making concerning future fertility may cause distress and it is therefore necessary to improve the fertility-related communication targeted to female cancer patients.
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| 13. |
- Berg Doukkali, Eva, et al.
(författare)
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Adolescents and Young Adults Experiences of Childhood Cancer: Descriptions of Daily Life 5 Years After Diagnosis
- 2013
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Ingår i: Cancer Nursing. - : Lippincott, Williams and Wilkins. - 0162-220X .- 1538-9804. ; 36:5, s. 400-407
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Tidskriftsartikel (refereegranskat)abstract
- Background: less thanbrgreater than less thanbrgreater thanSurvivors of childhood cancer are a growing population in society. These young people have a high risk of developing chronic health problems with a potential strong impact on their lives. How a childhood cancer experience affects survivors in adolescence has been studied to a limited extent; an increased understanding of this young group is needed to improve follow-up care. less thanbrgreater than less thanbrgreater thanObjective: less thanbrgreater than less thanbrgreater thanThe aim of this study was to gain a deeper understanding of how childhood cancer affects the lives of survivors by exploring adolescents and young adults views of what it is like living with this experience. less thanbrgreater than less thanbrgreater thanMethods: less thanbrgreater than less thanbrgreater thanFifty-nine 11- to 22-year-olds were interviewed a median of 5 years after a cancer diagnosis (response rate, 66%). Data were collected through telephone interviews and were analyzed using qualitative content analysis techniques. less thanbrgreater than less thanbrgreater thanResults: less thanbrgreater than less thanbrgreater thanThree groups of informants were identified according to their descriptions of the influence of cancer treatment on their daily life: feeling like anyone else (informants who described that the cancer experience had almost no influence on current life) (49%), feeling almost like others (those who described some influence) (44%), and feeling different (those describing a great influence on current life) (7%). less thanbrgreater than less thanbrgreater thanConclusions: less thanbrgreater than less thanbrgreater thanMost of the adolescents and young adults appear to get along well, although many informants described that life was affected to some extent by having had cancer. less thanbrgreater than less thanbrgreater thanImplications for Practice: less thanbrgreater than less thanbrgreater thanFollow-up care is needed that can identify those young survivors of childhood cancer having trouble with daily life and offer them support to strengthen their resources in managing difficulties in relation to having had cancer.
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| 14. |
- Bergstrom, Charlotta, et al.
(författare)
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Do young adults with cancer receive information about treatment- related impact on sex life? : Results from a population-based study
- 2023
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Ingår i: Cancer Medicine. - : WILEY. - 2045-7634. ; 12:8, s. 9893-9901
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Tidskriftsartikel (refereegranskat)abstract
- Background Sexual dysfunction is common following a cancer diagnosis in young adulthood (18-39 years) and problems related to sex life are ranked among the core concerns in this age group. Yet, few studies have investigated to what extent adults younger than 40, receive information from healthcare providers about the potential impact of cancer and its treatment on their sex life.Methods A population-based cross-sectional survey study was conducted with 1010 young adults 1.5 years after being diagnosed with cancer (response rate 67%). Patients with breast, cervical, ovarian and testicular cancer, lymphoma, and brain tumors were identified in national quality registries. Sociodemographic and clinical factors associated with receiving information were examined using multivariable binary logistic regression.Results Men to a higher extent than women reported having received information about potential cancer-related impact on their sex life (68% vs. 54%, p < 0.001). Receipt of information varied across diagnoses; in separate regression models, using lymphoma as reference, both women and men with brain tumors were less likely to receive information (women: OR 0.10, CI = 0.03-0.30; men: OR 0.37, CI = 0.16-0.85). More intensive treatment was associated with higher odds of receiving information in both women (OR 1.89; CI = 1.28-2.79) and men (OR 2.08; CI = 1.09-3.94). None of the sociodemographic factors were associated with receipt of information.Conclusions To improve sexual health communication to young adults with cancer, we recommend diagnosis-specific routines that clarify when in the disease trajectory to discuss these issues with patients and what to address in these conversations.
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| 15. |
- Fagerkvist, Kristina, et al.
(författare)
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Efficacy of a web-based psychoeducational intervention, Fex-can sex, for young adult childhood cancer survivors with sexual dysfunction : a randomized controlled trial
- 2024
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Ingår i: Internet Interventions. - : Elsevier. - 2214-7829. ; 36
-
Tidskriftsartikel (refereegranskat)abstract
- Background: No web-based interventions addressing sexual problems are available for young adult survivors of childhood cancer.Aim: This study aimed to test the efficacy of a web-based psychoeducational intervention, Fex-Can Sex, to alleviate sexual problems in young adults treated for cancer during childhood.Method: This randomized controlled trial tested the effects of a 12-week, self-help, web-based intervention. Young adults (aged 19–40) reporting sexual dysfunction were drawn from a population-based national cohort of childhood cancer survivors and randomized to either an intervention group (IG, n = 142) or a wait-list control group (CG, n = 136). The primary outcome was ‘Satisfaction with sex life’ assessed by the PROMIS® SexFS v 2.0. Secondary outcomes included other SexFS domains, body image (BIS), emotional distress (HADS), health-related quality of life (EORTC QLQ-C30), and sex-related self-efficacy. Surveys were completed at baseline (T0), directly after the intervention (T1), and three months later (T2). The effects of the intervention were tested using t-test and linear mixed models, including intention-to-treat (ITT) and subgroups analysis. Adherence was based on log data extracted from the website system. The intervention included an open-ended question about perceived sexual problems.Results: No effect of the intervention was found in the primary outcome. Regarding secondary outcomes, the IG reported less vaginal dryness (Lubrication subscale) than the CG at T1 (p = 0.048) and T2 (p = 0.023). Furthermore, at T1, the IG reported less emotional distress than the CG (p = 0.047). Subgroup analyses showed that those with greater sexual problems at T0 improved over time (T1 and T2), regardless of group allocation. Overall, adherence to the intervention was low and participants' activity levels did not change the results. Additionally, some members of the IG reported increased understanding and acceptance of their sexual problems.Conclusion: The Fex-Can Sex intervention shows potential to improve sexual function, especially among those with greater dysfunction. To increase adherence and effect, we recommend the intervention to be further developed including more tailored content.Clinical trial registration: ISRCTN Registry, trial number: 33081791 (registered on November 27, 2019).
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| 16. |
- Fagerkvist, Kristina, et al.
(författare)
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Efficacy of a web-based psychoeducational intervention, Fex-can sex, for young adult childhood cancer survivors with sexual dysfunction : A randomized controlled trial
- 2024
-
Ingår i: Internet Interventions. - : Elsevier. - 2214-7829. ; 36
-
Tidskriftsartikel (refereegranskat)abstract
- Background:No web-based interventions addressing sexual problems are available for young adult survivors of childhood cancer.Aim:This study aimed to test the efficacy of a web-based psychoeducational intervention, Fex-Can Sex, to alleviate sexual problems in young adults treated for cancer during childhood.Method:This randomized controlled trial tested the effects of a 12-week, self-help, web-based intervention. Young adults (aged 19-40) reporting sexual dysfunction were drawn from a population-based national cohort of childhood cancer survivors and randomized to either an intervention group (IG, n = 142) or a wait-list control group (CG, n = 136). The primary outcome was 'Satisfaction with sex life' assessed by the PROMIS (R) SexFS v 2.0. Secondary outcomes included other SexFS domains, body image (BIS), emotional distress (HADS), health-related quality of life (EORTC QLQ-C30), and sex-related self-efficacy. Surveys were completed at baseline (T0), directly after the intervention (T1), and three months later (T2). The effects of the intervention were tested using t-test and linear mixed models, including intention-to-treat (ITT) and subgroups analysis. Adherence was based on log data extracted from the website system. The intervention included an open-ended question about perceived sexual problems.Results:No effect of the intervention was found in the primary outcome. Regarding secondary outcomes, the IG reported less vaginal dryness (Lubrication subscale) than the CG at T1 (p = 0.048) and T2 (p = 0.023). Furthermore, at T1, the IG reported less emotional distress than the CG (p = 0.047). Subgroup analyses showed that those with greater sexual problems at T0 improved over time (T1 and T2), regardless of group allocation. Overall, adherence to the intervention was low and participants' activity levels did not change the results. Additionally, some members of the IG reported increased understanding and acceptance of their sexual problems.Conclusion:The Fex-Can Sex intervention shows potential to improve sexual function, especially among those with greater dysfunction. To increase adherence and effect, we recommend the intervention to be further developed including more tailored content.Clinical trial registration: ISRCTN Registry, trial number: 33081791 (registered on November 27, 2019).
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| 17. |
- Ferede, A. J., et al.
(författare)
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Patients’ perceptions of caring behaviors at referral hospitals in Ethiopia : A cross-sectional survey
- 2023
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Ingår i: International Journal of Nursing Sciences. - : Chinese Nursing Association. - 2352-0132. ; 10:3, s. 391-397
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Tidskriftsartikel (refereegranskat)abstract
- Objective: The purpose of this study was to determine patients’ perceptions of nurse caring behaviors and to identify factors associated with these perceptions. Methods: A cross-sectional study was conducted at three referral hospitals in Ethiopia. A consecutive sample of male and female patients (n = 652, response rate 98.8%) was interviewed using the Amharic version of the Caring Behaviors Inventory-16 (CBI-16, including four subscales: Assurance, Knowledge and skill, Respectful, and Connectedness) and the Patient Satisfaction Instrument (PSI). Socio-demographic and clinical factors associated with perceptions of caring behaviors were identified using multiple linear regression analysis. Results: Patients’ perceptions of nurse caring behaviors were high (total Mean = 4.86, SD = 0.72). Behaviors related to the Assurance subscale were rated the highest. The multiple linear regression analysis result showed several socio-demographic and clinical factors statistically significantly associated with patients’ perceptions of caring behaviors (total mean scores). Patients who were 40–49 years (B = −0.19, P = 0.012) and single (B = −0.13, P = 0.03) scored lower on total CBI-16 scores. Whereas, patients who had a higher educational level (B = 0.35, P = 0.001), cared for at surgery units (B = 0.11, P = 0.027), and reported having spent more time with a nurse in the past 8-h shift (B = 0.16, P < 0.001) were more likely to have higher perceptions of the care they received. The CBI-16 was positively correlated with satisfaction with received care, as measured with the Patient Satisfaction Instrument (r = 0.62, P < 0.001). Conclusion: Hospitalized patients in Ethiopia have overall high perceptions of nurse caring behaviors, especially with regard to physical-based caring, while their expectations of emotional-focused care are lower. We identified patients who were in need of care, patients aged 40–49 years and single. The time spent with nurses plays a pivotal role in patients’ perceptions of nurse caring behaviors. © 2023 The Authors
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| 18. |
- Ferede, Abebaw Jember, et al.
(författare)
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Perceptions of caring behaviors : Experiences of nurses in Ethiopia
- 2024
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Ingår i: Nursing and Health Sciences. - : John Wiley & Sons. - 1441-0745 .- 1442-2018. ; 26:1
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Tidskriftsartikel (refereegranskat)abstract
- Caring is a universal phenomenon that influences nurse-patient interactions and feelings, forming the foundation of the nursing profession. How nurses perceive and experience caring in low-income settings is not well understood. Therefore, the purpose of this study was to explore Ethiopian nurses' perceptions and experiences of caring using a qualitative descriptive design. Individual semi-structured interviews were conducted with 13 nurses aged 28-57. Interviews were analyzed inductively using reflexive thematic analysis guided by the recommendations of Braun and Clarke. The analysis resulted in three themes: caring is the heartbeat of patient care, constraints to the provision of care, and ways to overcome constraints. The results revealed that nurses were committed to fulfilling their professional obligations and meeting patients' needs despite experiencing multiple constraints. The findings provide a comprehensive perspective in understanding nurses' experiences of caring. Their narratives demonstrate that they face constraints in their clinical practice, which limit the quality of care, including rotation and lack of resources. Cooperation between health policymakers and nurse authorities is essential for shifting the clinical environment from the prevailing traditional task-oriented approach to patient-centered care.
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| 19. |
- Ferede, Abebaw Jember, et al.
(författare)
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Psychometric Properties of the Caring Behaviors Inventory-16 in Ethiopia
- 2022
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Ingår i: Nursing Reports. - : MDPI. - 2039-439X .- 2039-4403. ; 12:2, s. 387-396
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Tidskriftsartikel (refereegranskat)abstract
- Background: The Caring Behaviors Inventory-16 (CBI-16) is a comprehensive instrument measuring caring behaviors as experienced by patients. The study aimed to translate, culturally adapt and evaluate the psychometric properties of the CBI-16 among adult patients who speak the Amharic language. Methods: The measure was completed by 304 hospitalized patients. Construct validity was evaluated via exploratory factor analysis (EFA), confirmatory factor analysis (CFA), and contrasted groups' validity. Total CBI-16 scores were compared between groups that differed in self-rated satisfaction with care (Patient Satisfaction Instrument) to examine the contrasted groups' validity. Reliability was assessed using internal consistency (Cronbach's alpha). Results: The EFA suggested a four-factor model accounting for 66.1% of the total variance. The items loaded onto the subscales were similar to the CBI-24. The CFA supported the four-factor model with acceptable fit indices: normed Chi-square value 2.65 (X-2 = 259.60, df = 98), SRMR = 0.06, and RMSEA = 0.07, CFI = 0.88 and TLI = 0.86. The contrasted groups' validity was supported by significantly higher CBI-16 scores reported by patients more satisfied with their care (t = 3.66, p < 0.001). The reliability of the instrument was satisfactory (Cronbach's alpha = 0.83). Conclusions: The Amharic version of the CBI-16 displayed a four-factor solution and was shown to be a valid and reliable instrument for the assessment of the perceptions of caring behaviors in Ethiopia.
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| 20. |
- Fritzell, Kaisa, et al.
(författare)
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Patients' views of surgery and surveillance for familial adenomatous polyposis.
- 2010
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Ingår i: Cancer Nursing. - 0162-220X .- 1538-9804. ; 33:2, s. E17-23
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Familial adenomatous polyposis (FAP) is an inherited condition that requires prophylactic surgery (colectomy) followed by a lifetime program of endoscopic surveillance to prevent colorectal cancer. Patients are normally free of symptoms before surgery but a majority report problems related to bowel function postoperatively.OBJECTIVE: The aim of the study was to gain a deeper understanding of how FAP affects life by exploring patients' view of what it is like living with the illness and being committed to a lifelong screening program.METHODS: Three focus group interviews were conducted, and data were analyzed using descriptive qualitative content analysis.RESULTS: The analysis resulted in two categories related to the participants' view of living with FAP. The first category was associated with concerns related to the hereditary and lifelong nature of the disease as well as to the prophylactic surgery and the second category was related to patients' ways of managing life.CONCLUSION: Most participants expressed unmet needs, such as lack of healthcare providers with good knowledge about FAP, practical and psychosocial support, FAP educational programs, and organized meetings with other persons with the condition.IMPLICATIONS FOR PRACTICE: One important aspect of living with FAP shared by the participants concerned ways of managing life concerns, something that healthcare providers caring for patients with FAP should identify and support. Furthermore, continuity of care by health care providers with good knowledge about FAP can be an important way of reducing patient concerns.
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| 21. |
- Gebrie, Mignote Hailu, et al.
(författare)
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Health-related quality of life among patients with end-stage renal disease undergoing hemodialysis in Ethiopia : a cross-sectional survey
- 2023
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Ingår i: Health and Quality of Life Outcomes. - : BioMed Central (BMC). - 1477-7525. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundMeasurement of health-related quality of life (HRQOL) enables identification of treatment-related side effects of a disease. Such aspects may negatively impact on patients' lives and should be taken into consideration in medical decision-making. In sub-Saharan Africa, research from the perspective of patients with chronic kidney disease is scarce, and it is almost non-existent in patients undergoing hemodialysis. We aimed to determine HRQOL among end-stage renal disease patients undergoing maintenance hemodialysis in Ethiopia and to identify factors associated with HRQOL.MethodsA multi-center cross-sectional study was conducted in Addis Ababa, Ethiopia directed to all patients receiving hemodialysis due to kidney failure at 11 randomly-selected government and private hospitals/dialysis centers in the capital of Ethiopia. Data were collected by trained nurses using the KDQOL-36 instrument with five subscales measuring generic and disease-specific HRQOL. Study-specific items were used to collect socio-demographic and clinical data. Factors associated with HRQOL were examined using multivariable linear regression models.ResultsFour hundred eighty-one patients completed the survey through face-to-face interviews (response rate 96%; mean age 45.34 +/- 14.67). The mean scores of the subscales ranged from 25.6 to 66.68 (range 0-100), with higher scores reflecting better health. Factors associated with low HRQOL included older age, female sex, no formal education, poor medication adherence, > 2 hemodialysis sessions/week, lower body mass index (< 18.5), longer duration of hemodialysis treatment (>= 12 months), and poor social support.ConclusionPatients with kidney failure undergoing hemodialysis in Addis Ababa, Ethiopia, had low HRQOL across all subscales compared to previous studies. Therefore, the implementation of guidelines is crucial to improve patients' adherence to their prescribed medications. Furthermore, establishing patient support groups and encouraging patients to use the available support resources from family members, neighbors, and friends have the potential to improve patients' HRQOL.
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| 22. |
- Gebrie, Mignote Hailu, et al.
(författare)
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Patients' experience of undergoing maintenance hemodialysis : An interview study from Ethiopia
- 2023
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Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 18:5
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Tidskriftsartikel (refereegranskat)abstract
- Background People with kidney failure require renal replacement therapy in the form of dialysis or a kidney transplant for survival. Many facets of their life, both within and outside the dialysis unit, are impacted by the management of this disease. It is important to comprehend the experiences of people undergoing hemodialysis in order to improve the care provided to them. Therefore, this study aimed to explore the experiences of patients undergoing maintenance hemodialysis in Ethiopia.Methods A qualitative descriptive study was conducted at two healthcare facilities in Ethiopia. Individual interviews with 15 participants (men and women aged 19-63), undergoing hemodialysis in Ethiopia, were analyzed using reflexive thematic analysis.Results The analysis resulted in five themes: Feeling grateful, Facing a restricted life, a Supportive environment, Dreaming of a transplant, and Leading a hassled life. The subthemes include Trust in treatment, Faith in God, Challenging fluid and dietary restrictions, Being too fatigued to socialize, Being stigmatized, Family and social support, Supportive healthcare, Lacking a donor and sponsor, COVID-19 as a barrier, Financial constraints, Inaccessibility to care and transport and Access line implantation. Despite being dependent on a machine and having to deal with food and fluid restrictions as well as financial challenges, participants were hopeful and dreamed of a transplant.Conclusion From the study's participants, it was discovered that the experiences of people with kidney failure undergoing hemodialysis were generally, considerably negative narratives. Based on the results we recommend development of multidisciplinary teams to better meet patients' physical, emotional, and social needs while undergoing hemodialysis. Such a team should also involve the patient's family members when caring for patients on hemodialysis.
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| 23. |
- Gebrie, Mignote Hailu, et al.
(författare)
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Psychometric properties of the kidney disease quality of life-36 (KDQOL-36) in Ethiopian patients undergoing hemodialysis
- 2022
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Ingår i: Health and Quality of Life Outcomes. - : Springer Nature. - 1477-7525. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- Background Health-related quality of life (HRQOL) has a direct association with increased morbidity and mortality among end stage renal disease patients. Valid and reliable instruments to measure the HRQOL of patients with end stage renal disease are therefore required. This study aimed to translate, culturally adapt and evaluate the psychometric properties of the Amharic version of the Kidney Disease Quality of Life-36 (KDQOL-36) instrument in Ethiopian patients with end stage renal disease undergoing hemodialysis. Methods The KDQOL-36 instrument was developed for individuals with kidney disease who are being treated with dialysis and includes both generic and disease-specific components. The KDQOL-36 was translated to Amharic language and distributed to a cross-sectional sample of 292 hemodialysis patients. The psychometric evaluation included construct validity through corrected item-total correlation, confirmatory factor analysis and known group analysis. Convergent validity was evaluated by correlations between each of the three kidney disease targeted scales (symptoms/problems list, burden of kidney disease and effects of kidney diseases) and the European Quality of Life 5D-5L and Visual Analog Scales. Regarding reliability, internal consistency and test-retest reliability were assessed. Results Two hundred ninety-two patients with a mean age of 48 (SD +/- 14.7) completed the questionnaire. Corrected item- total correlation scores were > 0.4 for all items. Confirmatory factor analysis revealed a two chi(2) /df was 4.4, Root Mean Square Error of Approximation (RMSEA) = 0.108 (90% CI 0.064-0.095), Comparative Fit Index (CFI) = 0.922, Tucker Lewis Index (TLI) = 0.948 and Standardized Root mean-squared residual (SRMR) = 0.058) and three chi(2) /df = 3.1, RMSEA = 0.085 (90% CI 0.064-0.095), CFI = 0.854, TLI = 0.838 and SRMR = 0.067) factor models for the generic and disease specific components respectively. The mean scores of the three kidney disease targeted domains were correlated to the EQ-5D-5L & VAS with correlation coefficients of large magnitude (0.55-0.81). The reliability of the instrument was satisfactory (Cronbach's alpha = 0.81-0.91) and Intra-class correlation (ICC) = 0.90-0.96). Conclusion The Amharic version of the KDQOL-36 is a reliable and valid instrument recommended for assessment of HRQOL of Ethiopian patients on hemodialysis.
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| 24. |
- Gottvall, Maria, 1980-, et al.
(författare)
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Including a discussion forum in a web-based intervention on fertility and sexuality following cancer - Usage and content
- 2022
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Ingår i: Internet interventions. - : Elsevier. - 2214-7829. ; 29
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Tidskriftsartikel (refereegranskat)abstract
- Aim: The aim of the study was to investigate how young adult survivors of childhood cancer used an online discussion forum as part of a web-based psycho-educational intervention. Specifically, we aimed to characterize users of the discussion forum, investigate how they used the discussion forum (type of usage) and content of the posted messages.Methods: This study is a part of a randomized controlled trial, Fex-Can Childhood RCT. Participants with self-reported sexual dysfunction or fertility-related distress were drawn from a population-based national cohort. Sociodemographic and clinical characteristics of the intervention group (n = 322) and data on usage of the discussion forum were analysed with descriptive statistics and compared between subgroups. Messages posted in the online discussion forum were analysed with qualitative thematic analysis.Results: Approximately half (48 %) of participants in the intervention group accessed the discussion forum and most of them (76 %) without writing own posts. Users of the discussion forum did not statistically differ in sociodemographic or clinical characteristics from the rest of the intervention group. The 97 written posts, written by 38 individuals, were mainly descriptions of own experiences and thoughts and concerned three themes: A changed body, Concerns around family building and Longing for support. Peer-support and interaction between participants were seen in some forum threads and the 'like'-function was frequently used, demonstrating engagement and activity. Participants expressed that they felt affinity with and appreciated sharing own experiences and to recognize themselves in others' stories.Conclusions: A discussion forum as part of a web-based intervention appears to be a valuable component by giving participants an opportunity to share intimate experiences and concerns related to surviving cancer.
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| 25. |
- Haavisto, Anu, et al.
(författare)
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Premature ovarian insufficiency and chance of pregnancy after childhood cancer : A population-based study (the Fex-Can study)
- 2023
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Ingår i: International Journal of Cancer. - : Wiley-Blackwell. - 0020-7136 .- 1097-0215. ; 153:3, s. 644-653
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Tidskriftsartikel (refereegranskat)abstract
- Endocrine complications are a common late effect after childhood cancer. Our study assessed the prevalence and predictors of premature ovarian insufficiency (POI) and prospects of pregnancy in young female survivors. This nationwide study combined registry and survey data for female childhood cancer survivors aged 19 to 40 years, identified through the National Quality Registry for Childhood Cancer in Sweden. Of 1989 approached young women, 1333 (67%) participated by completing a survey. Median age at diagnosis 1981 to 2017 was 6 (range 0-17) and at study 28 (19-40) years. There were two indicators of POI, induced puberty reported in 5.3% and estrogen replacement therapy (ERT) in 9.3% at assessment. In separate logistic regression analyses (P < .001), induced puberty and ERT were significantly predicted by hematopoietic stem cell transplantation (HSCT), abdominal irradiation, central nervous system irradiation and chemotherapy. ERT was also associated with older age at diagnosis. Of the 626 women (48% of responders) who had tried to become pregnant, 25% had undergone fertility investigations and 72% reported having a biological child. Treatment with HSCT was associated with 5.4 times the odds of needing fertility investigations (P < .001). Having a biological child was associated with non-HSCT treatment, but also with ever having had a partner and older age at the time of study (all P < .001). In conclusion, the majority of those female childhood cancer survivors who had tried to conceive were able to successfully give birth. However, a small identifiable group of female survivors are at risk of subfertility and early menopause.
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| 26. |
- Haavisto, Anu, et al.
(författare)
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Reproductive late effects and testosterone replacement therapy in male childhood cancer survivors : a population-based study (the Fex-Can study)
- 2024
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Ingår i: International Journal of Cancer. - : John Wiley & Sons. - 0020-7136 .- 1097-0215. ; 154:12, s. 2121-2131
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Tidskriftsartikel (refereegranskat)abstract
- Childhood cancer survivors are at risk of various endocrine late effects affecting their quality of life. The aim of this study was to assess the prevalence and predictors of endocrine and reproductive outcomes in young adult survivors. A secondary aim was to assess possible associations between testosterone replacement therapy (TRT) and other endocrine, cardiovascular and psychosocial late effects. This nationwide study comprised 1212 male childhood cancer survivors aged 19–40 years, identified through the National Quality Registry for Childhood Cancer in Sweden. Median age at diagnosis during 1981–2017 was 7 (range 0–17) and at study 29 (19–40) years. The study combined self-report survey data with cancer treatment data from the national registry. Hormone-induced puberty was self-reported by 3.8% of the survivors and ongoing TRT by 6.0%. In separate logistic regression analyses, these treatments were associated with hematopoietic stem cell transplantation and cranial radiotherapy. Hormone-induced puberty was additionally associated with younger age at diagnosis. Men with TRT had a higher prevalence of other endocrine deficiencies, cholesterol medication, depressive symptoms and fatigue as well as a lower probability of living with a partner, having a biological child or current occupation. In the total male cohort, 28.2% reported having a biological child. Reassuring reproductive outcomes after less intensive therapies and low frequency of TRT were observed in young adult male childhood cancer survivors treated in the most recent treatment era. However, men with TRT suffered from several other endocrine, cardiovascular and psychosocial late effects, indicating a need for long-term monitoring of this high-risk group.
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| 27. |
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| 28. |
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| 29. |
- Holmefur, Marie, 1968-, et al.
(författare)
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Measurement properties of the 13-item sense of coherence scale using Rasch analysis
- 2015
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Ingår i: Quality of Life Research. - : Springer Netherlands. - 0962-9343 .- 1573-2649. ; 24:6, s. 1455-1463
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The sense of coherence (SOC) scale is widely used and has an extensive history in research. The psychometric properties of the SOC scale have been investigated using classic test theory, but modern test theory enables a more multifaceted investigation of the properties of the SOC scale. The aim of this study was to explore the measurement properties of the SOC scale using the Rasch measurement model.Methods: SOC questionnaires from a sample of 623 healthy adults were analysed using Rasch analysis. Aspects analysed were rating scale functioning, item fit, unidimensionality, differential item functioning (DIF), targeting, and reliability.Results: Rating scale analysis showed that the seven scale steps were not utilized in the intended manner and that a shortening to five categories would be beneficial. Twelve out of the 13 items showed acceptable goodness-of-fit and 43 % of the variance was explained by the SOC dimension in the principal components analysis. There was no DIF between subgroups in the sample. The items were well targeted to the sample SOC level with no ceiling or floor effects. Item and person reliability were good and the person separation index was 2.05 indicating that the scale can separate three different levels of SOC, which corresponds well to its theoretical base.Conclusions: The SOC scale is generally well functioning; however, the three components of SOC seem to influence the PCA results. The scale would benefit from a reduction from seven to five scale steps, which would need to be investigated further.
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| 30. |
- Hovén, Emma, 1983-, et al.
(författare)
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Psychometric evaluation of the Swedish version of the PROMIS Sexual Function and Satisfaction Measures in clinical and nonclinical young adult populations
- 2023
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Ingår i: Sexual Medicine. - : Oxford University Press. - 2050-1161. ; 11:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundThe Patient-Reported Outcomes Measurement Information System (PROMIS®) Sexual Function and Satisfaction (SexFS) version 2.0 measurement tool was developed to assess sexual functioning and satisfaction in the general population regardless of health condition and sexual orientation.AimThe study aimed to evaluate the psychometric properties of the Swedish version of the PROMIS SexFS measure in clinical and nonclinical populations of young adults (aged <40 years).MethodsThe SexFS was answered by a clinical population of young adult women (n = 180) and men (n = 110) with breast cancer and testicular cancer, respectively, and a nonclinical population of young adult women (n = 511) and men (n = 324) from the general population. Psychometric properties were evaluated by examining data quality (score distribution, floor and ceiling effects, proportion of missing data), construct validity (corrected item, total correlation, scaling success), and reliability (Cronbach α).OutcomesThe following domains of the SexFS 2.0 were investigated: Vaginal Lubrication, Vaginal Discomfort, Vulvar Discomfort- Clitoral, Vulvar Discomfort- Labial, Erectile Function, Interest in Sexual Activity, Satisfaction With Sex Life, Orgasm– Ability, and Orgasm- Pleasure.ResultsThe Swedish version of the SexFS 2.0 generated data of acceptable quality. Some noteworthy floor or ceiling effects were identified across domains and respondent groups. Corrected item totals were used to express the coherence between an item and the other items in the domain. The correlation coefficients were above 0.40 for all items, except for 1 of the items within the Vaginal Discomfort domain and for the items in the Erectile Function domain in the nonclinical group of men. High proportions of scaling success were noted across domains (96%-100%). Reliability was satisfactory (α = 0.74-0.92) for all domains, expect for Erectile Function of the nonclinical group (α = 0.53), due to low variability in item responses, which was improved somewhat (α = 0.65) when combined with the clinical group.Clinical ImplicationsA flexible tool to measure self-reported sexual function and satisfaction in young men and women is available for researchers and clinicians in Sweden.Strengths and LimitationsThe nationwide population-based sample of patients with cancer, identified from national quality registers, minimized selection bias. However, men in the general population had a lower response rate (34%) compared to the other groups, which introduced a risk of bias in estimates. The psychometric evaluation was limited to young adults (aged 19-40 years).ConclusionThe results provide evidence for the validity and reliability of the Swedish version of the SexFS measure for the assessment of sexual functioning and satisfaction in young adults from both clinical and nonclinical populations.
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| 31. |
- Hovén, Emma, et al.
(författare)
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Sexual dysfunction in young adult survivors of childhood cancer : A population-based study
- 2021
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Ingår i: European Journal of Cancer. - : Elsevier BV. - 0959-8049 .- 1879-0852. ; 154, s. 147-156
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: To determine the prevalence of sexual dysfunction and to identify the factors associated with sexual dysfunction in young adult childhood cancer survivors.METHODS: All survivors of childhood cancer (aged 19-40 years) in Sweden were invited to this population-based study, and 2546 men and women (59%) participated. Sexual function was examined with the PROMIS Sexual Function and Satisfaction Measure. Logistic regression was used to assess the differences between survivors and a general population sample (n = 819) and to identify the factors associated with sexual dysfunction in survivors.RESULTS: Sexual dysfunction in at least one domain was reported by 57% of female and 35% of male survivors. Among females, dysfunction was most common for Sexual interest (36%), Orgasm - ability (32%) and Vulvar discomfort - labial (19%). Among males, dysfunction was most common for the domains satisfaction with sex life (20%), Sexual interest (14%) and Erectile function (9%). Compared with the general population, male survivors more frequently reported sexual dysfunction in ≥2 domains (OR = 1.67, 95% CI: 1.03-2.71), with an increased likelihood of dysfunction regarding Orgasm - ability (OR = 1.82; 95% CI: 1.01-3.28) and Erectile function (OR = 2.30; 95% CI: 1.18-4.49). Female survivors reported more dysfunction regarding Orgasm - pleasure (9% versus 5%, OR = 1.86; 95% CI: 1.11-3.13). A more intensive cancer treatment, emotional distress and body image disturbance were associated with sexual dysfunction in survivors.CONCLUSIONS: The findings underscore the need for routine assessment of sexual health in follow-up care of childhood cancer survivors and highlight that those treated with more intensive cancer treatment and who experience concurrent psychological concerns may benefit from targeted screening and interventions.
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| 32. |
- Hovén, Emma, 1983-, et al.
(författare)
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What makes it work? Exploring experiences of patient research partners and researchers involved in a long-term co-creative research collaboration
- 2020
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Ingår i: Research Involvement and Engagement. - : BioMed Central. - 2056-7529. ; 6
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Tidskriftsartikel (refereegranskat)abstract
- Background: Exchanging experiences of patient and public involvement (PPI) can bring insights into why, how and when PPI is most effective. The aim of this study was to explore the experiences of patient research partners (PRPs) and researchers engaged in a co-creative long-term collaboration in cancer research.Methods: The aim and procedures of this study were jointly decided upon by PRPs and researchers. The PRPs included former patients treated for cancer and significant others of the same target group. The participants (11 PRPs, 6 researchers) took part in semi-structured telephone interviews. The interviews were analysed using qualitative content analysis by a researcher who had no prior relationships with the participants.Results: . Reasons for investing in the collaboration included the desire to improve cancer care and to make use of own negative experiences. Benefits of participating included a positive impact on the PRPs' psychosocial adjustment to the illness. Moreover, the researchers highlighted that working together with the PRPs made the research feel more meaningful. The participants reported that the collaboration improved the relevance and acceptability of the research. Having a shared goal, a clear but yet accommodating structure, as well as an open and trustful working atmosphere were recognised as elements of success. The PRPs furthermore emphasized the importance of seeing that their input mattered. Among the few challenges raised were the distance to the meeting venues for some PRPs and a limited diversity among participants.Conclusions: This study identified factors essential to researchers and clinicians attempting to engage the public in research. Our results suggest that for successful patient involvement, the purpose and format of the collaboration should be clear to both PRPs and researchers. A clear but yet accommodating structure and keen leadership emerged as key factors to create a sense of stability and a trustful atmosphere. Furthermore, providing regular feedback on how PRPs input is implemented is important for PRPs to stay committed over time.
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| 33. |
- Jervaeus, Anna, et al.
(författare)
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Clinical significance in self-rated HRQoL among survivors after childhood cancer - demonstrated by anchor-based thresholds
- 2014
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Ingår i: Acta Oncologica. - : Taylor & Francis. - 0284-186X .- 1651-226X. ; 53:4, s. 486-492
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: There is a need to establish clinically relevant thresholds (anchors) for identification of differences in health-related quality of life (HRQoL) and thereby provide stronger evidence regarding the HRQoL of childhood cancer survivors.AIM: To investigate HRQoL in childhood cancer survivors with a standardised instrument and to establish thresholds for clinically significant differences by using qualitative interviews as anchors. An additional aim was to investigate survivors' HRQoL in relation to an age-matched comparison group without cancer experience.MATERIAL AND METHODS: Self-rated HRQoL (KIDSCREEN-27) was assessed in a national cohort of survivors (n = 63, aged 12-22) and a comparison group (n = 257, aged 11-23). Findings from qualitative interview data were also used (n = 61); three subgroups ("Feeling like anyone else"; "Feeling almost like others"; "Feeling different") were identified based on survivors own perception of influence on daily life. Effect size calculations based on means from the KIDSCREEN-27 dimensions were performed using the subgroups as anchors to indicate clinical importance. Furthermore, standard multiple regression analyses were performed. Results. Effect sizes between the subgroups "Feeling like anyone else" and "Feeling almost like others" and the group "Feeling different" were large for all dimensions (1.04-2.07). The multiple regression models showed that being a survivor was significantly associated with one of the dimensions, School Environment, where survivors scored higher HRQoL. Furthermore, female sex and older age (17-23 years) significantly contributed to lower self-rated HRQoL. Conclusion. In clinical practice the KIDSCREEN-27 could be a useful screening tool to identify survivors of childhood cancer in need of extra support, using KIDSCREEN dimension mean values of 45 or less as thresholds. Larger scale studies are recommended to identify and test thresholds with regard to different age groups and time since diagnosis.
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| 34. |
- Jervaeus, Anna, et al.
(författare)
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Exploring childhood cancer survivors' views about sex and sexual experiences -findings from online focus group discussions.
- 2016
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 20, s. 165-172
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: To explore childhood cancer survivors' views about sex and sexual experiences and, as an additional aim, their possible needs for care and support from health care professionals regarding sexual life.METHODS: Written online focus group discussions were performed with survivors of childhood cancer, identified through the Swedish Childhood Cancer Registry; 133 (36%; aged 16-25) participated. Written text was analysed using qualitative content analysis.RESULTS: The analysis resulted in one main category: Could my cancer experience have an impact on my sexual life? with four generic categories: Sex considered to be good, Feeling insecure and falling behind, Relating sex to a stable relationship and Concerns related to the physical body. In general, participants had not reflected on the possibility that their cancer experience could impact on sexual life. Sex was often considered to be something natural, important and taken for granted. However, thoughts and worries were expressed including being shy, feeling insecure and falling behind peers. Physical concerns included vaginal dryness and difficulties related to erection and reaching orgasm. Many participants stated that sexual issues had not been discussed with health care professionals, however, the need for such support differed.CONCLUSIONS: Many of the childhood cancer survivors' did not relate their sexual experiences to previous cancer treatment. However, problems were expressed, both of emotional and physical nature. Many participants stated that they had not received any information or support regarding sexual issues from health care professionals, why it is recommended to be regularly addressed in follow-up care.
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| 35. |
- Lampic, Claudia, et al.
(författare)
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Oncologists' and pediatric oncologists' perspectives and challenges for fertility preservation
- 2019
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Ingår i: Acta Obstetricia et Gynecologica Scandinavica. - : John Wiley & Sons. - 0001-6349 .- 1600-0412. ; 98:5, s. 598-603
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Tidskriftsartikel (refereegranskat)abstract
- International guidelines recommend that health-care providers initiate discussions about the impact of treatment on fertility with cancer patients of reproductive age, or with parents/legal guardians of children, as early as possible in the treatment process. Still, both physicians and patients confirm that this is not always the case. This literature review summarizes findings regarding oncologists' and pediatric oncologists' perspectives and challenges of providing fertility preservation care, and points out directions for development. The results concerning the challenges facing clinicians are consistent and encompass both internal and external factors. The internal factors relate to clinicians' characteristics and values and include their knowledge of fertility preservation, clinical experience, perceptions of patients' plans for children, and how comfortable they are to discuss sensitive issues. The external factors relate to the availability of health-care services and the organization of care, including the clinicians' working conditions. Several strategies to overcome identified challenges for clinicians to provide high-quality fertility preservation care are proposed. These include educational interventions to increase clinicians' knowledge about treatment-induced fertility impairment and available fertility preservation measures, as well as interventions aimed to increase clinicians' readiness and competence to communicate with patients and their parents. In addition, different types of educational resources for patients have been suggested to improve patient-provider communication about fertility preservation, such as age-appropriate brochures and decision aids. Organizational approaches suggested to address the identified external factors include development and implementation of policies and guidelines as well as closer collaboration between oncological and fertility clinics. Also, modifications of electronic medical record systems may support clinicians by prompting the documentation of discussions about potential treatment impact on future fertility and about available fertility preservation options. The development and implementation of multifaceted oncofertility programs appears to be a promising way forward towards high-quality fertility preservation care meeting patients' needs.
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| 36. |
- Ljungman, Lisa, 1981-, et al.
(författare)
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Sexual Dysfunction Among Young Adults in Sweden-A Population-Based Observational Study
- 2020
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Ingår i: Sexual Medicine. - : Elsevier. - 2050-1161. ; 8:4, s. 631-642
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: There is a lack of studies using validated instruments to investigate prevalence and predictors of sexual dysfunction among young adults.AIM: This population-based observational study aimed to determine the prevalence and predictors of sexual dysfunction in young adults in Sweden and to compare sexual function in women and men.METHODS: A random sample of the general population aged 19-40 years, identified via the Swedish population registry, was approached with a postal survey. A total of 819 individuals participated, 493 women (51% response) and 326 men (34% response). Predictors of sexual dysfunction were identified by multivariable logistic binary regression analyses.MAIN OUTCOME MEASURE: Sexual function and satisfaction were assessed using the Patient-Reported Outcomes Measurement Information System Sexual Function and Satisfaction measure, version 2.0.RESULTS: Among the women, 53% reported at least one sexual dysfunction; the corresponding figure for men was 31%. The most common sexual dysfunction in women was low sexual interest (reported by 32%), whereas low satisfaction with sex life was the most common dysfunction in men (reported by 17%). Men reported a higher level of sexual interest and orgasm ability than women, whereas women reported a higher level of orgasm pleasure than men. Regression models showed that in both women and men, having a partner was related to lower risk of dysfunction in the domains satisfaction with sex life and orgasm pleasure. Having children was related to low interest in sex in women, whereas it was related to dissatisfaction with sex life in men. Being born outside of Sweden predicted sexual dysfunction in both women and men, as did experiencing symptoms of anxiety and depression.CONCLUSION: Sexual dysfunction is common in young adults, particularly in women. Risk factors of sexual dysfunction include not having a partner, having children, being an immigrant, and reporting symptoms of anxiety and depression. Ljungman L, Lampic C, Wettergren L, et al. Sexual Dysfunction Among Young Adults in Sweden-A Population-Based Observational Study. Sex Med 2020;8:631-642.
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| 37. |
- Ljungman, Lisa, 1981-, et al.
(författare)
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Study protocol for the Fex-Can Childhood project An observational study and a randomized controlled trial focusing on sexual dysfunction and fertility-related distress in young adult survivors of childhood cancer
- 2020
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Ingår i: Medicine. - : Ovid Technologies (Wolters Kluwer Health). - 0025-7974 .- 1536-5964. ; 99:28
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Tidskriftsartikel (refereegranskat)abstract
- Background: This study protocol describes the Fex-Can Childhood project, comprising two studies: The Fex-Can Childhood observational study (OS) and the Fex-Can Childhood randomized controlled trial (RCT). The Fex-Can Childhood OS aims to determine the prevalence and predictors of sexual dysfunction and fertility-related distress in young adult childhood cancer survivors (aged 19-40) compared to an age matched comparison group; the Fex-Can Childhood RCT will evaluate the effect of a web-based psycho-educational intervention (Fex-Can intervention) on sexual dysfunction and fertility-related distress. Methods: The Fex-Can Childhood OS will have a population-based cross-sectional design. All individuals treated for childhood cancer in Sweden at the age of 0 to 17 years (current age 19-40) will be identified through the National Quality Registry for Childhood Cancer. Established self-reported instruments will be used to measure sexual function, fertility-related distress, body image, anxiety and depression, and health-related quality of life. Self-efficacy related to sexual function and fertility, and fertility-related knowledge, will be assessed by study-specific measures. Clinical variables will be collected from the registry. Results will be compared to an age-matched comparison group from the general population. Participants in the Fex-Can Childhood OS who report a high level of sexual dysfunction and/or fertility-related distress will be invited to participate in the RCT. The Fex-Can intervention comprises two programs: The Fex-Can Sex and the Fex-Can Fertility targeting sexual dysfunction and fertility-related distress, respectively. The control condition will be a wait-list. Sexual function and fertility-related distress will be the primary outcomes. The secondary outcomes include body image, anxiety and depression, health-related quality of life and self-efficacy related to sexual function and fertility. Post- and follow-up assessments will be conducted directly after end of intervention (primary end point), at 3 months and 6 months after end of intervention. Additionally, a process-evaluation including study-specific items and a qualitative interview will be conducted. Discussion: The Fex-Can Childhood project will advance knowledge in the areas of sexual function and fertility-related distress among young adult survivors of childhood cancer. If the Fex-Can intervention proves to be efficacious, steps will be taken to implement it in the follow-up care provided to this population.
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| 38. |
- Masika, Golden M, et al.
(författare)
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Health-related quality of life and needs of care and support of adult Tanzanians with cancer : a mixed-methods study
- 2012
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 10, s. 133-
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Cancer is among the three leading causes of death in low income countries and the highest increase with regard to incidence figures for cancer diseases are found in these countries. This is the first report of the health-related quality of life (HRQOL) and needs of care and support of adult Tanzanians with cancer. METHODS: A mixed-methods design was used. The study was conducted at Ocean Road Cancer Institute (ORCI) in Dar es Salaam, Tanzania. One hundred and one patients with a variety of cancer diagnoses treated and cared for at ORCI answered the Kiswahili version of the EORTC QLQ-C30 investigating HRQOL. Thirty-two of the patients participated in focus group interviews discussing needs of care and support. Data from focus group interviews were analyzed with content analysis. RESULTS: The findings show that the patients, both women and men, report a low quality of life, especially with regard to physical, role, and social function and a high level of symptoms and problems especially with financial difficulties and pain. Financial difficulties are reported to a remarkably high extent by both women and men. The patients, both women and men report least problems with emotional function. A content analysis of the interview data revealed needs of food and water, hygienic needs, emotional needs, spiritual needs, financial needs, and needs of closeness to cancer care and treatment services. CONCLUSION: The high score for pain points out that ORCI is facing severe challenges regarding care and treatment. However, when considering this finding it should be noted that the pain subscale of the Kiswahili version of the EORTC QLQ-C30 did not reach acceptable internal consistency and showed less than satisfactory convergent validity. This also applies to the subscales cognitive function and global health/quality of life. Attention should be drawn to meet the identified needs of Tanzanian cancer patients while hospitalized but also when at home. Increased accessibility of mosquito nets, pads, and pain-killers would help to fulfil some needs.
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| 39. |
- Micaux, Claire, et al.
(författare)
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Efficacy of a Web-Based Psychoeducational Intervention for Young Adults with Fertility-Related Distress following Cancer (Fex-Can) : Randomized Controlled Trial
- 2022
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Ingår i: JMIR Cancer. - : JMIR Publications. - 2369-1999. ; 8:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Threatened fertility following cancer diagnosis in the reproductive age may severely impact emotional and psychosocial well-being in survivorship. Effective web-based interventions for fertility-related distress have been lacking.Objective: This study aims to test whether the Fertility and Sexuality following Cancer (Fex-Can) intervention is superior to standard care in reducing fertility-related distress and related psychosocial outcomes in young adults with cancer.Methods: This randomized controlled trial evaluated a 12-week, web-based, automated self-help intervention for fertility-related distress following cancer—Fex-Can Fertility. Individuals were identified via Swedish national quality registries, and those reporting fertility-related distress 1.5 years after diagnosis were invited. A total of 100 women and 24 men (aged 19-40 years) answered self-administered surveys at baseline (T0), directly after the intervention (T1), and 3 months later (T2). The main outcome was fertility-related distress, which was measured by using the 6-dimension Reproductive Concerns After Cancer (RCAC) scale. The secondary outcomes were health-related quality of life (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire), emotional distress (Hospital Anxiety and Depression Scale), fertility-related knowledge, and fertility self-efficacy. In addition, the intervention group (IG) reported self-perceived changes in problems related to fertility after cancer (T1). 2-tailed t tests and linear mixed models, including intention-to-treat and subgroup analyses, were performed to compare the effects of the intervention with those of standard care.Results: Although 62% (31/50) of the participants in the IG stated that their concerns about fertility were fewer after the intervention, there were few statistically significant group differences in the main outcome (RCAC) at T1 and T2. Compared with controls, the IG rated lower distress concerning the dimension child’s health at T2 (P=.003; effect size [ES]=0.64). This difference was maintained when adding group and time interactions (intention-to-treat: P=.003; ES=0.58). The IG also had better self-perceived cancer-related fertility knowledge at T1 (P=.05; ES=0.35) and T2 (P=.01; ES=0.42) than the control group. Subgroup analyses based on dose or adherence and baseline RCAC scores did not substantially alter these results. Overall, the use of the web-based program was low.Conclusions: The Fex-Can intervention had small to moderate positive effects on cancer-related fertility knowledge and distress related to child’s health. The lack of group differences in other dimensions of fertility distress and related secondary outcomes contrasted with reports on self-perceived improvement after the intervention. The Fex-Can Fertility program may be a useful complement to routine psychosocial support in the clinical care of young women and men with cancer.
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| 40. |
- Micaux Obol, Claire, et al.
(författare)
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Experiences of a web-based psycho-educational intervention targeting sexual dysfunction and fertility distress in young adults with cancer-A self-determination theory perspective
- 2020
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Ingår i: PLOS ONE. - : PLOS. - 1932-6203. ; 15:7
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: Sexual and reproductive health are significant aspects of quality of life. Healthcare often fails to provide adequate support for young cancer survivors in this area, hence the need to develop more effective interventions. The present study aimed to describe experiences of participating in a web-based psycho-educational intervention focusing on sexual dysfunction and fertility distress after cancer, and to explore these experiences within the theoretical frame of the basic psychological needs for competence, relatedness and autonomy according to self-determination theory.METHODS: Individual semi-structured interviews with 24 women and 4 men, age 19-40, were abductively analyzed using the Framework approach for qualitative content analysis.RESULTS: Participant experiences corresponded well with the three main deductive themes competence, relatedness and autonomy, divided into a total of nine subthemes illustrating varying degrees of basic need satisfaction with considerable nuance but not without ambiguity. While satisfaction of the need for competence could be linked to the amount of information in relation to participants' cognitive capacity, satisfaction of the need for relatedness seemed to be of special importance for these young adults with cancer experience. Invitation to the program meant a chance at alleviating loneliness and normalizing problems, symptoms and concerns. Participants' descriptions of perceived autonomy support were more challenging and ambiguous, because of the many contradictions in participants' responses to their variable situations.CONCLUSION: Basic psychological needs were confirmed as flexible positions along a continuum rather than discrete and mutually exclusive qualities. Understanding the variety of basic need satisfaction may enhance the design of future web-based interventions to be even more inclusive, tailorable and autonomy-supportive. Further research is warranted to determine the role of basic need satisfaction as a possible mediator for web-based psychoeducational interventions in cancer survivorship care.
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| 41. |
- Momeni, Pardis, et al.
(författare)
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Factors of importance for self-reported mental health and depressive symptoms among ages 60-75 in urban Iran and Sweden.
- 2011
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 25:4, s. 696-705
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Depression is a common experience affecting 121 million people around the world. In high income countries, depression is one of the most common psychiatric conditions among the elderly. Studies show that immigrants are particularly at risk for mental ill health.AIM: This study investigates the self-reported mental health among two Iranian groups; one born and residing in Iran and one consisting of Iranian immigrants in Sweden, as well as native Swedes living in Sweden. The study also aims to explore and compare self-reported depressive symptoms among three groups.METHODS: This study is based on a cross-sectional design measuring self-reported health with a study specific questionnaire. The programme SPSS V.17.0 was used for all statistical analyses.FINDINGS: 1088 participants were approached (668 Iranians in Iran; 105 immigrated Iranians in Sweden; and 305 Swedes in Sweden). Factors effecting self-reported mental health was self-reported health, smoking, satisfaction with social life and also a sense of connection to ones cultural roots and traditions. Also demographic variables such as group belonging (Swedes vs. Iranians), sex and satisfaction with Income were shown to be important when performing the regression analysis. In the chi-square analysis the Iranian samples reported depressive symptoms to a larger extent than the Swedish group in all aspects of self-reported depressive symptoms. Self-reported depressive symptoms were reported to a greater extend in women compared to men. Our findings indicate that the Iranian populations living in both Tehran and Stockholm report depressive symptoms to an extent that merits concern. The findings indicate that Iranians living in Tehran and Iranians who have immigrated to Sweden require more attention regarding mental health care. Health care providers in both countries should be aware of the current state of mental health among Iranians in both Sweden and Iran.
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| 42. |
- Moraes Holst, Luiza, et al.
(författare)
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Fecal Luminal Factors from Patients with Gastrointestinal Diseases Alter Gene Expression Profiles in Caco-2 Cells and Colonoids
- 2022
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Ingår i: International Journal of Molecular Sciences. - : MDPI AG. - 1422-0067 .- 1661-6596. ; 23:24
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Tidskriftsartikel (refereegranskat)abstract
- Previous in vitro studies have shown that the intestinal luminal content, including metabolites, possibly regulates epithelial layer responses to harmful stimuli and promotes disease. Therefore, we aimed to test the hypothesis that fecal supernatants from patients with colon cancer (CC), ulcerative colitis (UC) and irritable bowel syndrome (IBS) contain distinct metabolite profiles and establish their effects on Caco-2 cells and human-derived colon organoids (colonoids). The metabolite profiles of fecal supernatants were analyzed by liquid chromatography-mass spectrometry and distinguished patients with CC (n = 6), UC (n = 6), IBS (n = 6) and healthy subjects (n = 6). Caco-2 monolayers and human apical-out colonoids underwent stimulation with fecal supernatants from different patient groups and healthy subjects. Their addition did not impair monolayer integrity, as measured by transepithelial electrical resistance; however, fecal supernatants from different patient groups and healthy subjects altered the gene expression of Caco-2 monolayers, as well as colonoid cultures. In conclusion, the stimulation of Caco-2 cells and colonoids with fecal supernatants derived from CC, UC and IBS patients altered gene expression profiles, potentially reflecting the luminal microenvironment of the fecal sample donor. This experimental approach allows for investigating the crosstalk at the gut barrier and the effects of the gut microenvironment in the pathogenesis of intestinal diseases.
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| 43. |
- Naamala, Allen, et al.
(författare)
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Health-related quality of life among adult patients with cancer in Uganda : a cross-sectional study
- 2024
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Ingår i: Global Health Action. - : Taylor & Francis. - 1654-9716 .- 1654-9880. ; 17:1
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Tidskriftsartikel (refereegranskat)abstract
- ObjectivesThe study aimed to investigate the prevalence and factors associated with poor health-related quality of life in adults with cancer in Uganda.MethodsThis cross-sectional study surveyed 385 adult patients (95% response rate) with various cancers at a specialised oncology facility in Uganda. Health-related quality of life was measured using the EORTC QLQ-C30 in the Luganda and English languages. Predetermined validated clinical thresholds were applied to the instrument in order to identify patients with poor health-related quality of life, that is, functional impairments or symptoms warranting concern. Multivariable logistic regression was used to identify factors associated with poor health-related quality of life in six subscales: Physical Function, Role Function, Emotional Function, Social Function, Pain and Fatigue.ResultsThe mean age of the patients was 48 years. The majority self-reported poor functioning ranging between 61% (Emotional Function) to 79% (Physical Function) and symptoms (Fatigue 63%, Pain 80%) at clinically concerning levels. These patients were more likely to be older, without formal education and not currently working. Being an inpatient at the facility and being diagnosed with cervical cancer or leukaemia was a predictor of poor health-related quality of life.ConclusionImprovement of cancer care in East Africa requires a comprehensive and integrated approach that addresses various challenges specific to the region. Such strategies include investment in healthcare infrastructure, for example, clinical guidelines to improve pain management, and patient education and support services.
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| 44. |
- Naamala, Allen, et al.
(författare)
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Psychometric properties of the EORTC QLQ-C30 in Uganda
- 2021
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Ingår i: Health and Quality of Life Outcomes. - : BioMed Central (BMC). - 1477-7525. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- Background Self-reported measures play a crucial role in research, clinical practice and health assessment. Instruments used to assess self-reported health-related quality of life (HRQoL) need validation to ensure that they measure what they are intended to, detect true changes over time and differentiate between subjects. A generic instrument measuring HRQoL adapted for use among people living with cancer in Uganda is lacking; therefore, this study aimed to evaluate the psychometric properties of the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 in patients with cancer in Uganda. Methods Adult patients with various types of cancer (n = 385) cared for at the Uganda Cancer Institute answered the EORTC QLQ-C30 in Luganda or English language, the two most spoken languages in the country. The two language versions were evaluated with regard to data quality (floor and ceiling effects and missing responses), reliability (internal consistency) and validity (construct, known-group and criterion). Construct validity was examined through confirmatory factor analysis (CFA). Mean scores were compared between groups differing in disease stage to assess known-group validity. Criterion validity was examined according to associations between two QLQ-C30 subscales (Global quality of life and Physical function) and the Karnofsky Performance Scale (KPS). Results Floor and ceiling effects were observed for several scales in the Luganda and English versions. All EORTC scales with the exception of Cognitive function (Luganda alpha = 0.66, English alpha = 0.50) had acceptable Cronbach's alpha values (0.79-0.96). The CFA yielded good fit indices for both versions (RMSEA = 0.08, SRMR = 0.05 and CFI = 0.93). Known-group validity was demonstrated with statistically significant better HRQoL reported by patients with disease stages I-II compared to those in stages III-IV. Criterion validity was supported by positive correlations between KPS and the subscales Physical function (Luganda r = 0.75, English r = 0.76) and Global quality of life (Luganda r = 0.59, English r = 0.72). Conclusion The Luganda and English versions of the EORTC QLQ-C30 appear to be valid and reliable measures and can be recommended for use in clinical research to assess HRQoL in adult Ugandans with cancer. However, the cognitive scale did not reach acceptable internal consistency and needs further evaluation.
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| 45. |
- Reinius, Maria, et al.
(författare)
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Towards a new understanding of HIV-related stigma in the era of efficient treatment : A qualitative reconceptualization of existing theory
- 2021
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Ingår i: Journal of Advanced Nursing. - : John Wiley & Sons. - 0309-2402 .- 1365-2648. ; 77:5, s. 2472-2480
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Tidskriftsartikel (refereegranskat)abstract
- AimTo further develop Earnshaw and Chaudoir's HIV stigma framework by describing the experiences of HIV-related stigma among people living with viral suppression in a context where HIV is well controlled and to investigate how these experiences correspond to the stigma mechanisms of the framework.DesignQualitative study using interviews and a framework approach to analysis.MethodsPeople living with virally suppressed HIV in Sweden were recruited through an outpatient clinic and interviewed about their experiences of social aspects of living with HIV. The interviews were audio recorded, transcribed and analysed using a framework approach.ResultsFifteen participants (eight women and seven men, aged 30–64 years) were interviewed from March to September 2017. They described stigma around HIV as a barrier in many situations. Anticipated and enacted stigma were found to be more complex than is described in the existing literature. Being labelled as a person with HIV was found to be an important and persistent part of the stigma experience. Disclosure was found to be context-related and a result of a process of negotiating and weighing the relevance of disclosing HIV, perceiving HIV as a private matter and feeling a responsibility to disclose one's HIV status to others. An important reason for nondisclosure was to avoid being labelled with HIV, which would then become their most defining feature.ConclusionsThe HIV stigma framework could benefit from revision for people living with virally suppressed HIV.ImplicationsThe present findings, which indicate the role of health professionals in relation to disclosure and labelling, may guide nurses and other healthcare personnel in providing counselling and support for people who live with virally suppressed HIV and experience stigma.
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| 46. |
- Rodriguez-Wallberg, Kenny A., et al.
(författare)
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Prevalence and predictors for fertility-related distress among 1010 young adults 1.5 years following cancer diagnosis - results from the population-based Fex-Can Cohort study
- 2023
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Ingår i: Acta Oncologica. - : TAYLOR & FRANCIS LTD. - 0284-186X .- 1651-226X. ; 62:12, s. 1599-1606
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Tidskriftsartikel (refereegranskat)abstract
- Background: Cancer treatment during reproductive ages may negatively impact fertility and there is a need of firm knowledge about the prevalence and predictors of fertility-related distress. The aim was to examine fertility-related distress in a population-based sample of young women and men recently treated for cancer and to identify predictors for this outcome.Material and methods: This nationwide cohort study included 1010 individuals (694 women and 316 men), mean age 34.5 +/- 4.9 and 32.1 +/- 5.5, respectively, diagnosed with breast, cervical, ovarian, testicular cancers, brain tumors or lymphoma at ages 18-39 in Sweden. Participants completed a survey 1.5-year post-diagnosis to assess fertility-related distress (RCAC), emotional distress (HADS) and self-efficacy, as well as sociodemographic and clinical factors and fertility preservation. Logistic regression was used to examine associations between explanatory factors and high fertility-related distress (RCAC subscale mean >4).Results: Many participants (69% of women and 47% of men) had previous children and about half reported a wish for future children. High fertility-related distress was more prevalent among women (54%) than men (27%), and women were more likely than men to report distress concerning all but one RCAC dimension after adjustment for sociodemographic factors. Use of fertility preservation was unevenly distributed (15% of women and 71% of men) and was not associated with decreased fertility-related distress. In multivariable logistic regression models, a wish for future children, being single, not having previous children, symptoms of anxiety and low self-efficacy regarding one's ability to handle threats of infertility were associated with high fertility-related distress.Conclusion: This nationwide study found a high prevalence of fertility-related distress in young women and men recently treated for cancer and identified sociodemographic and psychological predictors. Fertility preservation was not found to act as a buffer against fertility-related distress, indicating the continuous need to identify strategies to alleviate fertility distress following cancer.
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| 47. |
- Salih, Mohammed Hassen, et al.
(författare)
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Translation and psychometric evaluation of chronic illness anticipated stigma scale (CIASS) among patients in Ethiopia
- 2022
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Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 17:1
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Tidskriftsartikel (refereegranskat)abstract
- Background Stigma is common among patients with chronic illnesses. It affects the delivery of healthcare for not addressing the psychological components and may interfere with the patient's attendance to necessary health care services. Therefore, a valid and reliable instrument to measure anticipated stigma related to chronic illness is vital to inform possible interventions. This study aimed to translate the Chronic Illness Anticipated Stigma Scale (CIASS) into the Amharic language and evaluate its psychometric properties in Ethiopia.Methods The CIASS was translated into Amharic language using standard procedures. The Amharic version was completed by 173 patients (response rate 96%) with chronic illness from three referral hospitals in the Amhara region. Internal consistency was examined through Cronbach's alpha. Construct validity was evaluated by confirmatory factor analysis and convergent validity by using a Pearson correlation of P-value less than or equal to 0.05.Results The internal consistency was estimated at Cronbach alpha of 0.92. By using a structural equation model, and modification indices a model fitness testing was run and shows a root mean squared error of approximation 0.049 (90% CI, 0.012-0.075). The structural validity results in 78.8% of confirmatory factor analysis showed from the extraction of the three-dimension (components). Validity tests for convergent by using Pearson correlation positively correlated with common mental distress and negatively correlated with quality of life-BREF, and the construct validity shows a good valid tool to CIASS.Conclusion The Amharic language version of the chronic illness anticipated stigma scale shows a satisfactory level of reliability and validity on different psychometric measures of assessment. The tool may be useful for future researchers and patients with chronic illness in the Amharic-speaking population. Moreover, it will be used to see the psychological burden related to chronic illness and for comparison among international population groups.
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| 48. |
- Seferli, Jotta, et al.
(författare)
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Patients experiences of dental implant placement for treatment of partial edentulism in a student clinic setting
- 2014
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Ingår i: Swedish Dental Journal. - : Swedish dental association. - 0347-9994. ; 38:2, s. 77-86
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to evaluate patients' experiences of oral implant surgery when performed in a student clinic setting and the potential impact on patients' daily life. Patient selection was carried out during a round, to which undergraduate students in semester 9 and 10 could bring patients that they considered eligible for one or two implants. Partial edentulous patients that fulfilled the inclusion criteria for implant installation at the student's clinic were consequently enrolled to implant surgery with either Astra Tech or 3i implants. The same surgeon accomplished all implant installations and the students were involved in the treatment, initially by assisting during the surgery and subsequently by performing the prosthetic restoration. After the surgery, a study-specific questionnaire was sent to patients for evaluation of discomfort, pain during the surgical procedure and postoperative symptoms. Thirty-six patients were included in the study, 30 patients answered the questionnaire (response rate 83%). When retrospectively assessed, more than half of the patients (60%) perceived discomfort in the course of the implant surgery and 29% reported pain during the surgical procedure. Impact on daily living and postoperative symptoms were rarely reported (most common were pain, swelling and difficulties with chewing) and had a short duration when they occurred. Based on the results of this study conducted at a student's clinic, the impact of implant surgery on daily living appears to be small. However, it is noteworthy that the perception of discomfort and pain during the surgical procedure was frequently reported. Continued research is recommended to expose the patient's experiences of implant surgery in an educational context as well as in general dental practice.
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| 49. |
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| 50. |
- Skog, Rebecca, et al.
(författare)
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The role of a discussion forum within a web-based psychoeducational intervention focusing on sex and fertility : what do young adults communicate?
- 2023
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Ingår i: Cancer Medicine. - : John Wiley & Sons. - 2045-7634. ; 12:16, s. 17273-17283
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Tidskriftsartikel (refereegranskat)abstract
- Objective: This study sought to investigate interactive participation and content of a moderated discussion forum within a web-based psychoeducational intervention aimed at alleviating sexual dysfunction and fertility distress in young adults diagnosed with cancer.Methods: The study is part of the Fex-Can Young Adult randomized controlled trial (RCT), in which young adults with self-reported sexual dysfunction or fertility distress were invited to participate. This study focuses on RCT participants that were randomized into the intervention condition. Sociodemographics and clinical characteristics of intervention participants and level of activity in the intervention were analyzed with descriptive statistics and compared between subgroups ("high" and "low" activity participants). Inductive qualitative thematic analysis was used to analyze the posts in the discussion forum.Results: Of 135 intervention participants, 24% met the criteria for high activity participation. There were no statistically significant differences found in terms of clinical and sociodemographic characteristics between high and low activity participants. Ninety-one participants (67%) accessed the discussion forum, and 19 (14%) posted at least once. Posters shared intimate details of their experiences of sexuality and fertility following cancer. The thematic analysis of posts resulted in four themes: fertility fears, perceptions of the changed body, missing out on life, and importance of support and information.Conclusions: While a smaller proportion of participants posted in the discussion forum, a majority spent time reading posts (lurkers). Participants posting in the forum shared experiences of intimate relationships, body image, parenthood concerns, and support needs. The discussion forum was used by a majority of intervention participants, and provided appreciated support for those who posted in the forum. We therefore recommend similar interventions to include this opportunity for interaction and communication.
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