| 1. |
- Ljungman, Lisa, et al.
(author)
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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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In: Psycho-Oncology. - : John Wiley & Sons. - 1057-9249 .- 1099-1611. ; 27, s. S128-S128
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Journal article (peer-reviewed)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.
(author)
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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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In: Acta Oncologica. - 0284-186X .- 1651-226X. ; 50:5, s. 648-652
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Journal article (peer-reviewed)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.
(author)
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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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In: BMC Medical Research Methodology. - : Springer Science and Business Media LLC. - 1471-2288. ; 14, s. 115-
-
Journal article (peer-reviewed)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.
(author)
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Does school attendance during initial cancer treatment in childhood increase the risk of infection?
- 2013
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In: Pediatric Blood & Cancer. - : Wiley. - 1545-5009 .- 1545-5017. ; 60:8, s. 1307-1312
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Journal article (peer-reviewed)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.
(author)
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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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In: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 8
-
Journal article (peer-reviewed)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.
(author)
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Fertility-related information received by young women and men with cancer : a population-based survey
- 2021
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In: Acta Oncologica. - : Taylor & Francis. - 0284-186X .- 1651-226X. ; 60:8, s. 976-983
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Journal article (peer-reviewed)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.
(author)
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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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In: Health and Quality of Life Outcomes. - : BMC. - 1477-7525. ; 18:1
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Journal article (peer-reviewed)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.
(author)
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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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In: Supportive Care in Cancer. - : Springer. - 0941-4355 .- 1433-7339. ; 22:10, s. 2805-2812
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Journal article (peer-reviewed)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.
(author)
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Sex differences in fertility-related information received by young adult cancer survivors
- 2012
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In: Journal of Clinical Oncology. - : American Society of Clinical Oncology. - 0732-183X .- 1527-7755. ; 30:17, s. 2147-2153
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Journal article (peer-reviewed)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.
(author)
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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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In: Acta Oncologica. - : Informa Healthcare. - 0284-186X .- 1651-226X. ; 54:2, s. 243-252
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Journal article (peer-reviewed)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.
(author)
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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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In: Cancer Nursing. - : Lippincott, Williams and Wilkins. - 0162-220X .- 1538-9804. ; 36:5, s. 400-407
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Journal article (peer-reviewed)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.
(author)
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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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In: Cancer Medicine. - : WILEY. - 2045-7634. ; 12:8, s. 9893-9901
-
Journal article (peer-reviewed)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.
(author)
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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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In: Internet Interventions. - : Elsevier. - 2214-7829. ; 36
-
Journal article (peer-reviewed)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.
(author)
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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
-
In: Internet Interventions. - : Elsevier. - 2214-7829. ; 36
-
Journal article (peer-reviewed)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.
(author)
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Patients’ perceptions of caring behaviors at referral hospitals in Ethiopia : A cross-sectional survey
- 2023
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In: International Journal of Nursing Sciences. - : Chinese Nursing Association. - 2352-0132. ; 10:3, s. 391-397
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Journal article (peer-reviewed)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.
(author)
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Perceptions of caring behaviors : Experiences of nurses in Ethiopia
- 2024
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In: Nursing and Health Sciences. - : John Wiley & Sons. - 1441-0745 .- 1442-2018. ; 26:1
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Journal article (peer-reviewed)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.
(author)
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Psychometric Properties of the Caring Behaviors Inventory-16 in Ethiopia
- 2022
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In: Nursing Reports. - : MDPI. - 2039-439X .- 2039-4403. ; 12:2, s. 387-396
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Journal article (peer-reviewed)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.
(author)
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Patients' views of surgery and surveillance for familial adenomatous polyposis.
- 2010
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In: Cancer Nursing. - 0162-220X .- 1538-9804. ; 33:2, s. E17-23
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Journal article (peer-reviewed)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.
(author)
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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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In: Health and Quality of Life Outcomes. - : BioMed Central (BMC). - 1477-7525. ; 21:1
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Journal article (peer-reviewed)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.
(author)
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Patients' experience of undergoing maintenance hemodialysis : An interview study from Ethiopia
- 2023
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In: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 18:5
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Journal article (peer-reviewed)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.
(author)
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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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In: Health and Quality of Life Outcomes. - : Springer Nature. - 1477-7525. ; 20:1
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Journal article (peer-reviewed)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.
(author)
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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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In: Internet interventions. - : Elsevier. - 2214-7829. ; 29
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Journal article (peer-reviewed)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.
(author)
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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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In: International Journal of Cancer. - : Wiley-Blackwell. - 0020-7136 .- 1097-0215. ; 153:3, s. 644-653
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Journal article (peer-reviewed)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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