| 1. |
- 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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| 2. |
- 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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| 3. |
- 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
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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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| 4. |
- 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
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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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| 5. |
- 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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| 6. |
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| 7. |
- 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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| 8. |
- 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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| 9. |
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| 10. |
- Johansen, Gry, et al.
(författare)
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Health-related quality of life, sexual function, psychological health, reproductive concerns and fertility outcome in young women treated with fertility-sparing surgery for ovarian tumors : a prospective longitudinal multicentre study
- 2024
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Ingår i: Gynecologic Oncology. - : Elsevier. - 0090-8258 .- 1095-6859. ; 189, s. 101-108
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Tidskriftsartikel (refereegranskat)abstract
- Objective: This study aimed to investigate health-related quality of life (HRQoL), sexual function, psychological-health, reproductive concerns, and fertility outcomes of women of reproductive age undergoing Fertility-Sparing Surgery (FSS) for treatment of ovarian cancer (OC) or borderline ovarian tumor (BOT), over a 2-year period.Methods: Prospective longitudinal multicentre study including women 18–40 years undergoing FSS between 2016 and 2018 in Sweden. Clinical data at diagnosis, histopathological findings and 2-year follow-up regarding oncological and reproductive outcomes were collected. Participants completed the EORTC QLQ-C30 and OV-28, FSFI, HADS and study-specific items at time of diagnosis and at one- and two-years following FSS. Data were analysed using a model for repeated measures to investigate changes over time.Results: Of 68 eligible women, 49 were included following exclusions due to benign pathology or subsequent radical surgery. During a mean follow-up of 20.5 months, two women experienced a recurrence and 82% reported regular menstruations. The majority (94%) had a strong desire to become biological mothers, which remained or increased over time. The conception-rate was 76%. HRQoL, psychological-health and sexual function improved over time and the proportion of women with sexual dysfunction decreased. At one-year follow-up 50% of nulliparous women had scores indicating sexual dysfunction compared to 0% of the women who had given birth either before or after surgery (p = 0.008).Conclusion: HRQoL, psychological-health and sexual function improved during two-year follow-up after FSS in young women presenting with OC or BOT. Women who had given birth prior to or after FSS reported improved sexual function compared to nulliparous women.
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