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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

Background The 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. Aim The 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 Methods The 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). Outcomes The 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. Results The 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 Implications A 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 Limitations The 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). Conclusion The 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.

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 Z 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. 2021 The Author(s). Published by Elsevier Ltd. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).

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.

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. Trial registration: ISRCTN Registry, trial number: 33081791 (registered on November 27, 2019).

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 χ2 /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 χ2 /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.

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. CLINICALTRIAL ISRCTN Registry 36621459; https://www.isrctn.com/ISRCTN36621459

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.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.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.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.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.ISRCTN Registry 36621459; https://www.isrctn.com/ISRCTN36621459.

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.

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 when used in a Ugandan context. Methods Adult patients with various types of cancer (N=385) cared for at the Uganda Cancer Institute answered the Luganda or English version of the EORTC QLQ-C30. 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 α=0.66, English α=0.50) had acceptable Cronbach’s alpha values (0.79–0.96). The CFA yielded good fit indices for both versions (RMSEA=0.076–0.081, SRMR=0.048 and CFI=0.928–0.932). 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. The Global quality of life and the Physical function scales correlated positively to KPS (r=0.65 and r=0.75), indicating criterion validity. 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.

Aim\ud To 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.\ud \ud Design\ud Qualitative study using interviews and a framework approach to analysis.\ud \ud Methods\ud People 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.\ud \ud Results\ud Fifteen 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.\ud \ud Conclusions\ud The HIV stigma framework could benefit from revision for people living with virally suppressed HIV.\ud \ud Implications\ud The 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.

Supplemental Digital Content is available in the text, 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.

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.

Objective The aim of this study was to investigate practice behaviours of Swedish physicians with regard to discussing the impact of cancer treatment on fertility with paediatric oncology patients and their parents, and to identify factors associated with such discussions. Methods A cross‐sectional survey study was conducted targeting all physicians in Sweden working in paediatric oncology care settings. Participants responded to a questionnaire measuring practice behaviour, attitudes, barriers, and confidence in knowledge. Multivariable logistic regression was used to determine factors associated with seldom discussing fertility. Results More than half of the physicians routinely talked with their patients/parents about the treatment's potential impact on fertility (male patients: 62%; female patients: 57%; P = 0.570). Factors associated with less frequently discussing fertility with patients/parents were working at a non‐university hospital (male patients: OR 11.49, CI 1.98–66.67; female patients: OR 33.18, CI 4.06–271.07), concerns that the topic would cause worry (male patients: OR 8.23, CI 1.48–45.89; female patients: OR 12.38, CI 1.90–80.70), and perceiving the parents as anxious (male patients: OR 7.18, CI 1.20–42.85; female patients: OR 11.65, CI 1.32–103.17). Conclusions Based on our findings, we recommend structured training in how to communicate about fertility issues in stressful situations, which in turn might increase fertility‐related discussions in paediatric oncology.

Author(s): Wettergren, Lena; Kent, Erin E; Mitchell, Sandra A; Zebrack, Brad; Lynch, Charles F; Rubenstein, Mara B; Keegan, Theresa HM; Wu, Xiao-Cheng; Parsons, Helen M; Smith, Ashley Wilder; AYA HOPE Study Collaborative Group | Abstract: ObjectiveThis cohort study examined the impact of cancer on sexual function and intimate relationships in adolescents and young adults (AYAs). We also explored factors predicting an increased likelihood that cancer had negatively affected these outcomes.MethodsParticipants (n = 465, ages 15-39) in the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study completed two surveys approximately 1 and 2nyears post-cancer diagnosis. We used multivariable logistic regression to determine factors negatively affected by perceptions of sexual function at 2nyears post-diagnosis.ResultsForty-nine percent of AYAs reported negative effects on sexual function at 1nyear post-cancer diagnosis and 70% of those persisted in their negative perceptions 2nyears after diagnosis. Those reporting a negative impact at 2nyears were more likely to be 25nyears or older (OR, 2.53; 95% CI, 1.44-4.42), currently not raising children (OR, 1.81; 95% CI, 1.06-3.08), experiencing fatigue (OR, 0.99; 95% CI, 0.975-0.998) and more likely to report that their diagnosis has had a negative effect on physical appearance (OR, 3.08; 95% CI, 1.97-4.81). Clinical factors and mental health were not significant predictors of negative effects on sexual function.ConclusionsMany AYAs diagnosed with cancer experience a persistent negative impact on sexual life up to 2nyears following diagnosis. The findings underscore the need to develop routine protocols to assess sexual function in AYAs with cancer and to provide comprehensive management in the clinical setting. Copyright © 2016 John Wiley a Sons, Ltd.

Aim Little is known about the health‐related quality of life (HRQoL) of children with lower urinary tract dysfunction (LUTD) and chronic kidney disease (CKD). We investigated LUTD and other possible predictors of impaired HRQoL in children with conservatively treated moderate‐to‐severe CKD or with a kidney transplant. Methods All 64 children with CKD or a kidney transplant treated at Karolinska University Hospital, Stockholm, Sweden, between June 2011 and December 2012 were approached and 59 children aged 8–18 were enrolled in the study. Lower urinary tract function was evaluated with voiding history, frequency and volume chart, uroflowmetry and postvoid ultrasound measurements. Self‐reported HRQoL was assessed with validated generic instruments. Results The HRQoL of the study cohort was as good as the general paediatric population, apart from the physical and psychological well‐being dimensions, and was no different to children with other chronic conditions. Urinary incontinence, but not LUTD in general, was associated with impaired HRQoL, as was having a kidney transplant and being female in some dimensions. Conclusion LUTD was common in children with CKD or a kidney transplant but did not affect their general HRQoL. Predictors of impaired HRQoL included incontinence, having had a kidney transplant and being female.

Introduction The survival rates for testicular cancer are excellent; still, there is a lack of knowledge regarding important survivorship issues, such as sexual dysfunction and reproductive concerns. Aim The aim of this study was to investigate the prevalence and predictors of sexual dysfunction and reproductive concerns and the potential association between these issues in young men ∼2 years after a diagnosis of testicular cancer. Methods Data were collected from 111 men (response rate = 50%) diagnosed with testicular cancer at age 16–39. Patients were identified via the Swedish National Quality Registry for Testicular Cancer and approached with a survey, including standardized measures of sexual function, reproductive concerns, body image, and health-related quality of life. The survey was sent to participants approximately 2 years after their cancer diagnosis. Clinical variables were collected from the registry. Predictors were identified by multivariable linear regression analyses. Main Outcome Measures The main outcomes were sexual function, assessed with the Patient-Reported Outcomes Measurement Information System Sexual Function and Satisfaction measure version 2.0, and reproductive concerns, assessed with the Reproductive Concerns After Cancer scale. Results Sexual dysfunction was reported by 26% of men, and a high level of reproductive concerns was reported by 28%. Lower satisfaction with sex life was associated with older age (β = −0.41), negative body image (β = −0.42), not having a partner (β = 4.8), and dissatisfaction with sex life before cancer (β = 8.31). Negative body image was associated with reproductive concerns in the dimensions of fertility potential (β = 0.06), partner disclosure (β = 0.08), and child’s health (β = 0.07), whereas having had fertility preservation predicted higher levels of concerns with regard to personal health (β = 0.52) and achieving pregnancy (β = 0.53). Clinical variables did not predict either sexual function or reproductive concerns. Clinical Implications Our results show that the majority of young men diagnosed with testicular cancer do not report sexual dysfunction or reproductive concerns 2 years after diagnosis. A sizeable minority, however, does report dysfunction or reproductive concerns, which should be recognized in the follow-up care of this population. Strengths & Limitations A strength of the study is the use of high-quality registry data and validated instruments. The lack of Swedish norms for sexual function and reproductive concerns is a possible limitation. Conclusion A subgroup of young men treated for testicular cancer report sexual dysfunction or reproductive concerns approximately 2 years after diagnosis. Factors associated with these issues seem to mainly be psychological, rather than medical, nature.

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. \ud \ud 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. \ud \ud 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. \ud \ud 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.

This study examined occupational status and factors associated with sick leave and disability pension among adult long-term survivors previously treated with allogeneic stem cell transplantation (allo-SCT) during childhood. Moreover, occupational status was compared to that of a reference group. Data were collected with questionnaires and from medical records. The SCT group included 59 adults (18-45 years old: response rate 63%) treated with allo-SCT in childhood with a median of 17 (range 3-28) years earlier. The reference group included 296 individuals randomly selected from the general population. The results show that 54% of the long-term survivors were working part- or full-time and that 19% were on sick leave or disability pension. A larger proportion of the SCT group was on sick leave or disability pension (19% vs. 6%: p

Infertility is a recognised potential sequel of cancer treatment which impacts negatively on the quality of survival. The aim of this study was to explore how men and women experience the threat of infertility by cancer treatment and individuals' thoughts about having children after cancer during the first 2 years following diagnosis. Nine women and seven men (aged 24-41) participated in two interviews in this longitudinal interview study, after the initiation of cancer treatment and 2 years thereafter. The interviews focused on participants' thoughts and feelings about threatened fertility and having children. The interviews were analysed with qualitative content analysis with a particular focus on identifying experiences over time. The Traits-Desires-Intentions model was used to reflect upon the study findings. The analysis resulted in the identification of four themes: Continue calmly on chosen path, Abandoning plans for children, Avoiding the subject of fertility and Struggling towards life goals. The results emphasise the need to offer individualised fertility-related treatment communication and counselling, both at the time of cancer diagnosis and also in connection with follow-up care. Appropriate fertility-related communication should be included in young cancer patients' survivor care plans.

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.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.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.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.

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.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.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.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.

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.

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.

Background Chronic health conditions are known to be both abundant and severe after pediatric hematopoietic stem cell transplantation (SCT). The present objective was to investigate the impact of disease and treatment on individual QoL and health-related quality of life (HRQoL) in long-term survivors of childhood lymphoblastic malignancy treated with conventional therapy versus SCT. Procedure Survivors of lymphoblastic malignancy treated with (n = 18) or without (n = 52) SCT were recruited a median follow-up time of 18 and 14 years, respectively. The indication for SCT was relapsed disease in 17 of 18 cases. Autologous stem cells were used in 15 cases. Total body irradiation (TBI) was included in the conditioning regimen for all SCT patients. A cross-sectional study was conducted using two validated instruments: SEIQoL-DW (individual QoL) and SF-36 (HRQoL). Content analysis was used to analyze SEIQoL-DW and an overall QoL index score was calculated. Two multiple linear regression analyses were performed to detect factors influencing outcomes. Results Poorer ratings of overall QoL and more negative consequences related to physical dysfunctions were shown in the SCT group. The findings indicate that being unemployed or on sick leave are associated with a decline in HRQoL and individual QoL rather than SCT, cranial radiation therapy, present age, or sex. Conclusion In this small sample of long-term survivors of SCT, QoL seems reasonably good and similar to that of those having received conventional therapy. However, managing an employment must be acknowledged as an important part of life that has a great impact on QoL. Pediatr Blood Cancer 2013;601382-1387. © 2013 Wiley Periodicals, Inc.

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.

BACKGROUND: Patients with familial adenomatous polyposis who undergo surgery to prevent colorectal cancer experience various abdominal symptoms that may affect their physical and mental health.\ud \ud OBJECTIVE: This study was designed to investigate self-reported presence, frequency, and troublesomeness of abdominal symptoms in such patients in relation to sex, type of surgery, and physical and mental health.\ud \ud DESIGN: A cohort study with a descriptive and comparative cross-sectional design.\ud \ud SETTING AND PARTICIPANTS: All adult patients in the Swedish Polyposis Registry (Karolinska University Hospital, Stockholm, Sweden) who were diagnosed with familial adenomatous polyposis, had undergone prophylactic colorectal surgery, and were aged 18 to 75 years were invited to return a mailed questionnaire.\ud \ud MAIN OUTCOME MEASURES: Self-reported presence, frequency, and troublesomeness of 21 abdominal symptoms were assessed with the Abdominal Symptom Questionnaire. Physical health and mental health were evaluated with the Medical Outcomes Study Short Form 36 Health Survey.\ud \ud RESULTS: Of 275 eligible patients, 209 (76%) responded. Of respondents, 91% reported having had at least 1 symptom during the last 3 months. All 21 symptoms investigated were reported. A higher number of symptoms was reported by women than by men: mean, 7.55 (SD, 4.89) vs 5.14 (4.49); P < .01. No significant difference was found between women and men in overall troublesomeness of symptoms: 3.15 (1.30) vs 3.09 (1.27); P = .763. Self-reported number of symptoms was an independent predictor of physical and mental health, with a high number of symptoms related to poor physical and mental health.\ud \ud LIMITATIONS: The Abdominal Symptom Questionnaire has not been previously used in patients with FAP, and measurement of physical and mental health with the Short Form 36 Health Survey may not capture all aspects of health status in patients with familial adenomatous polyposis.\ud \ud CONCLUSION: Patients with familial adenomatous polyposis suffer from a wide variety of abdominal symptoms after colorectal surgery. Identification of patients with a high number of abdominal symptoms is especially important because the number of abdominal symptoms affects patients’ physical and mental health.

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. ...

Aims. The aims were to investigate potential effects of mode of administration on response rate, internal consistency, completeness of data, floor and ceiling effects and interaction effects of mod ...

Aim The objective was to compare sexual function, sexual experience and quality of partner relationship by gender in a cohort of long-term survivors of childhood cancer with a sample from the general population. Methods A 30-item self-reported postal questionnaire was completed by a cohort of 224 (64%) long-term survivors of childhood cancer and 283 (51%) randomly selected persons from the general population. Results Male survivors more often reported periods of low sexual interest ( p = 0.019), more frequently reported low sexual satisfaction ( p = 0.015), less frequently reported feeling sexually attractive ( p = 0.020) and reported a lower total number of sexual partners ( p = 0.031) than males in the comparison group did. Males diagnosed with a central nervous system (CNS) tumour more frequently reported sexual arousal problems ( p = 0.003), low sexual satisfaction ( p = 0.021) and total number of sexual partners ( p = 0.012) than did males with other diagnoses. There were no statistically significant differences regarding sexual function between the female survivors and the females in the comparison group. Conclusion : The results indicate that cancer disease and treatment have more impact on sexual function of male survivors than on the sexual function of female survivors. Amongst the survivors, males diagnosed with CNS tumours were shown to be the most vulnerable group. Assessment of sexual function is recommended to be included in regular follow-ups after childhood cancer.

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.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.Three focus group interviews were conducted, and data were analyzed using descriptive qualitative content analysis.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.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.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.

The aims of this study are to follow health-related quality of life (HRQOL), school attendance, and social interaction with friends in children with cancer and to explore potential relationships between HRQOL and school attendance. The study also describes self-reported reasons for not attending school and not meeting friends. During a 2-year period, all schoolchildren in Sweden starting treatment for cancer were invited to participate in the study. Participants (N = 101) were assessed 3 times during the first 5 months of treatment using 2 questionnaires: DISABKIDS Chronic Generic Module (DCGM-37) and a study-specific questionnaire. The results indicate a diminished HRQOL that remained stable over the study period, with girls rating worse HRQOL compared with boys. School attendance significantly increased over time, and approximately half of the children attended school 5 months after start of treatment. Self-reported HRQOL was positively correlated to days of school attendance. The results emphasize the importance of psychosocial care and nursing for children diagnosed with cancer, especially for girls. Research to further explore gender differences in HRQOL among children diagnosed for cancer is recommended.

OBJECTIVE: This cohort study examined the impact of cancer on sexual function and intimate relationships in adolescents and young adults (AYAs). We also explored factors predicting an increased likelihood that cancer had negatively affected these outcomes. METHODS: Participants (n = 465, ages 15–39) in the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study completed two surveys approximately 1 and 2 years post-cancer diagnosis. We used multivariable logistic regression to determine factors negatively affected by perceptions of sexual function at 2 years post-diagnosis. RESULTS: Forty-nine percent of AYAs reported negative effects on sexual function at 1 year post-cancer diagnosis and 70% of those persisted in their negative perceptions 2 years after diagnosis. Those reporting a negative impact at 2 years were more likely to be 25 years or older (OR, 2.53; 95% CI, 1.44–4.42), currently not raising children (OR, 1.81; 95% CI, 1.06–3.08), experiencing fatigue (OR, 0.99; 95% CI, 0.975–0.998) and more likely to report that their diagnosis has had a negative effect on physical appearance (OR, 3.08; 95% CI, 1.97–4.81). Clinical factors and mental health were not significant predictors of negative effects on sexual function. CONCLUSIONS: Many AYAs diagnosed with cancer experience a persistent negative impact on sexual life up to 2 years following diagnosis. The findings underscore the need to develop routine protocols to assess sexual function in AYAs with cancer and to provide comprehensive management in the clinical setting.

In this study health-related quality of life (HRQL) in long-term survivors of Hodgkin's lymphoma (HL) was evaluated and the findings were analyzed using a conceptual model developed by Wilson and Cleary. A better understanding of the relationships between the variables explaining HRQL may improve care and rehabilitation of HL patients. The populations were long-term survivors of HL (n = 121) and a control group (n = 236). Participants were approached with one semi-structured interview, an extended version of the Schedule for the Evaluation of Individual Quality of Life - Direct Weighting (SEIQoL-DW) and three standardized questionnaires: Hospital Anxiety and Depression (HAD) scale, Short Form 12 health survey questionnaire (SF-12) and Sense of Coherence (SOC) scale. No differences regarding the mean scores were found between the HL survivors and the controls except for the SF-12, where the patients considered themselves to be in poorer physical health than the controls (p < 0.01). Even though physical health was diminished, patients did not evaluate overall QoL worse compared to the controls. The major determinants of perception of general QoL were self-rated physical and mental health as well as SOC. The HRQL of persons who have survived a median of 14 years with HL is similar to that of controls.

This study aimed to use an individual approach in evaluating QoL in long-term survivors of Hodgkin's lymphoma (HL) and their view of what impact the disease has had on life using an extended version of the The Schedule for the Evaluation of the Individual quality of life-Direct Weighting (SEIQoL-DW). Adult long-term survivors from HL (n = 121) were compared with a randomly selected sample of the general population in Stockholm (n = 236). The results showed that the most commonly nominated areas (>50% of patients and controls) important in life were family, personal health, work and relations to other people. The HL survivors mentioned leisure and finances less frequently than the controls. However, neither the current status in the different areas nor the QoL index score differed between survivors and controls. Thoughts and worries around disease, fatigue and loss of energy and late effects on skin and mucous membrane were the most commonly reported problems following HL. Sixty-six percent of the survivors reported a change in their view of life and of themselves. Demographic and disease characteristics did not influence the ratings of the chosen areas. In conclusion, long-term survivors of HL seem to have adapted well to the situation of having had a life-threatening disease and undergoing treatment, as measured with SEIQoL-DW. The extended Swedish version with a disease-specific module could be of great value when identifying specific issues that are important for the patient at time of evaluation.

The aim was to investigate how childhood cancer survivors perceive school and whether their perceptions differ from corresponding descriptions of peers. Survivors (n = 48) currently attending educational institutions (median 5 years post diagnosis; now aged 12-21 years) from a national cohort of school-age children were compared with matched peers (n = 47). Data were collected through interviews and analyzed qualitatively and quantitatively. The results indicate that survivors and peers perceive school similarly; almost 90% described high well-being in school and indicated that they were motivated and received no additional tutoring; approximately 60% reported no difficulties achieving learning objectives. A few differences were found; survivors described themselves as more satisfied with their academic performance and school environment, but less satisfied with friends, than peers did. Previous treatment with radiation was associated with lower academic satisfaction among survivors. It is suggested that survivors perceive school overall as positive and do not have more problems reaching educational goals than their peers. However, quality of relationships with friends needs further investigation.

The aim was to compare self-rated independence in childhood cancer survivors 5 years after diagnosis with corresponding ratings during initial cancer treatment and those in a comparison group. A further aim was to determine whether and how certain clinical and demographic variables affected self-rated independence. Self-rated independence, a dimension included in the health-related quality of life (HRQoL) measure DISABKIDS Chronic Generic Measure (DCGM-37), was assessed in a Swedish cohort of survivors (n = 63, aged 12-22 years) and compared with ratings during initial cancer treatment and those in an age-matched comparison group (n = 257). Potential predictors of self-rated independence were estimated using multiple regression analysis. Survivors rated their independence significantly higher 5 years after diagnosis than during initial cancer treatment and higher than the comparison group. Neither demographic nor clinical variables (age, sex, diagnosis, initial cancer treatment) predicted self-rated independence 5 years post diagnosis. Five years after diagnosis, survivors of childhood cancer appear to have reached a satisfactory level of independence. However, survivors are likely to experience complications over the longer term, and therefore continued follow-up is warranted to follow possible changes in self-reported independence.

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.

The aim of this explorative study was prospectively to evaluate the presence of post-traumatic stress symptoms (PTSS) in patients with hematological malignant disorders undergoing autologous stem cell transplantation (ASCT). The findings were related to sense of coherence and quality of life aspects. Twenty patients were evaluated with four standardized instruments before undergoing ASCT and then at two follow-ups. The patients participating in the study reported PTSS levels high enough to merit attention. Although PTSS declined over time, the levels were still high compared with other studied populations of cancer patients. Intrusive and avoidant symptoms correlated significantly to anxiety and depression but not to sense of coherence and physical dimensions. The high levels of PTSS and their relation to emotional distress emphasize the importance of psychosocial care for this group of patients.

Background. There is a need to establish clinically relevant thresholds (anchors) for identifi cation of differences in healthrelated 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 signifi cant 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 identifi ed based on survivors own perception of infl uence 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 signifi cantly associated with one of the dimensions, School Environment, where survivors scored higher HRQoL. Furthermore, female sex and older age (17 ‐ 23 years) signifi cantly 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. The survival rates for children treated for childhood cancer have increased over the years and today the survival probability at 10 years is approximately 75% [1]. Results from large cohort studies show that longterm survivors are at high risk of developing serious health problems [2]. The focus of the present study is on health-related quality of life (HRQoL) where results from previous studies indicate ratings among survivors in parity or better compared to comparison groups [3 ‐ 5]. To our knowledge, there is a lack of scientifi c reports that have combined quantitative and qualitative approaches when studying HRQoL in survivors after childhood cancer. Such an approach could be used to establish clinically relevant thresholds (anchors) for identifi cation of differences in HRQoL and thereby provide stronger evidence regarding the HRQoL of childhood cancer survivors.

BACKGROUND Children undergoing cancer therapy are at risk for infectious complications that require hospitalization and antimicrobial therapy. Host factors such as age and underlying disease may predict the risk of severe infections in these children. To describe the increased morbidity due to infections in children with cancer, we characterized the antibiotic use during the infectious complications in a national cohort of children 7-16 years of age with cancer. PROCEDURE Data on infectious complications were prospectively collected from the medical records of all newly diagnosed children with cancer, aged 7-16 years, in Sweden between 2004 and 2006. An episode of infection was defined as a period of time when oral or intravenous antimicrobial treatment was prescribed because of symptoms of infection. RESULTS A total of 230 infectious episodes occurred in 80 of the 101 patients. Pathogens were isolated in 15% of the blood cultures that showed a predominance of Gram-positive bacteria. Intravenous broad-spectrum antibiotics with cephalosporins and carbapenems were mostly used as single drugs but also in combination with aminoglycosides and glycopeptide. The median treatment length varied between 6 and 11 days depending on cancer diagnosis. CONCLUSION Our data demonstrate that infectious complications contribute significantly to morbidity in children with cancer aged 7-16 years. At the time of this survey, antibiotic prescription patterns varied and cephalosporins and carbapenems were mostly used. With increasing antibiotic resistance, a more stringent antibiotic stewardship with less use of cephalosporins and carbapenems should be encouraged for children with cancer. Data on prescription patterns should be incorporated as a quality measurement in pediatric cancer care.

Background: Clinical research often lacks participants of young age. Adding to the small amount of scientific studies that focus on the population entering adulthood, there are also difficulties to recruit them. To overcome this, there is a need to develop and scientifically evaluate modes for data collection that are suitable for adolescents and young adults. With this in mind we performed 39 online focus group discussions among young survivors of childhood cancer to explore thoughts and experiences around dating, being intimate with someone, and having children. Objective: The aim of the study was to evaluate online focus group discussions as a mode for data collection on sensitive issues among young persons with a cancer experience. Methods: One hundred thirty-three young persons (16-25 years) previously diagnosed with cancer, participated in 39 synchronous online focus group discussions (response rate 134/369, 36%). The mode of administration was evaluated by analyzing participant characteristics and interactions during discussions, as well as group members’ evaluations of the discussions. Results: Persons diagnosed with central nervous tumors (n=30, 27%) participated to a lower extent than those with other cancer types (n=103, 39%; χ 2= 4.89, P=.03). The participants described various health impairments that correspond to what would be expected among cancer survivors including neuropsychiatric conditions and writing disabilities. Even though participants were interested in others’ experiences, sexual issues needed more probing by the moderators than did fertility-related issues. Group evaluations revealed that participants appreciated communicating on the suggested topics and thought that it was easier to discuss sex when it was possible to be anonymous toward other group members. Conclusions: Online focus group discussions, with anonymous participation, are suggested to be a feasible and valid mode for collecting sensitive data among young persons with a cancer experience. [JMIR Res Protoc 2016;5(2):e86]

Chronic health conditions are known to be both abundant and severe after pediatric hematopoietic stem cell transplantation (SCT). The present objective was to investigate the impact of disease and treatment on individual QoL and health-related quality of life (HRQoL) in long-term survivors of childhood lymphoblastic malignancy treated with conventional therapy versus SCT.Survivors of lymphoblastic malignancy treated with (n = 18) or without (n = 52) SCT were recruited a median follow-up time of 18 and 14 years, respectively. The indication for SCT was relapsed disease in 17 of 18 cases. Autologous stem cells were used in 15 cases. Total body irradiation (TBI) was included in the conditioning regimen for all SCT patients. A cross-sectional study was conducted using two validated instruments: SEIQoL-DW (individual QoL) and SF-36 (HRQoL). Content analysis was used to analyze SEIQoL-DW and an overall QoL index score was calculated. Two multiple linear regression analyses were performed to detect factors influencing outcomes.Poorer ratings of overall QoL and more negative consequences related to physical dysfunctions were shown in the SCT group. The findings indicate that being unemployed or on sick leave are associated with a decline in HRQoL and individual QoL rather than SCT, cranial radiation therapy, present age, or sex.In this small sample of long-term survivors of SCT, QoL seems reasonably good and similar to that of those having received conventional therapy. However, managing an employment must be acknowledged as an important part of life that has a great impact on QoL.

Objectives. To compare ratings of quality of care between patients with genetic cancer who receive specialized care with patients who receive non-specialized care while controlling for socio-demographic and clinical variables; Material and methods. All patients in a national cohort of adult patients diagnosed with familial adenomatous polyposis (FAP) who had undergone prophylactic colorectal surgery were assessed (n = 276, response rate 76%). Quality of care was measured with the Quality of Care from the Patient Perspective (QPP). Univariate and multivariate logistic regression analyses were performed; Results. Patients receiving specialized care were significantly more likely to report the quality of care as better in all three QPP dimensions investigated than those receiving non-specialized care; Conclusions. In order to promote and maintain good quality of care for surgically treated patients with FAP, and to minimize the risk of cancer, specialized care, including continuity and easy access of health care professionals, should be provided

The present study aimed to investigate the relationship between school attendance and infection requiring antimicrobial treatment in children undergoing treatment for cancer.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.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.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.

BACKGROUND:: The concept of sense of coherence (SOC) may be applied to explain individuals' resources for dealing with the stressors confronted in daily life. Little is known about what impact cancer in childhood may have on the development of SOC. OBJECTIVE:: The objectives of this study were to compare SOC between long-term survivors of childhood cancer and a comparison group and to explore the need for current support among the survivors and the association between need for support and SOC. METHODS:: Data were collected from 224 long-term survivors aged 18 to 37 years using the 13-item SOC scale and interviews. A matched comparison group (n = 283) randomly selected from the general population was included. RESULTS:: There was no significant difference in the mean SOC score between the survivors and the comparison group. Twenty percent of the survivors reported a need for support, a need significantly predicted by a low SOC, as well as surgery and/or radiation treatment often in combination with chemotherapy. CONCLUSIONS:: Long-term survivors of childhood cancer seem to have resources to cope with stressful situations in life to the same degree as people in general. Survivors with fewer resources to cope and those having received a more intense treatment were more likely to be in need of support. IMPLICATIONS FOR PRACTICE:: The concept of SOC in nursing practice may be helpful to identify and discuss an individual's resources and impediments to health to better understand the need for support among survivors of childhood cancer.

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.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.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.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.

The aims were to investigate potential effects of mode of administration on response rate, internal consistency, completeness of data, floor and ceiling effects and interaction effects of mode of administration, gender and age on self-reported health status and emotional distress among Swedish adolescents and young adults.A cross-sectional comparative study.Using a stratified quota sampling scheme, 840 adolescents and young adults (aged 13-23 years) were randomly chosen from the general population. Participants were randomised according to mode of administration, telephone interview or postal questionnaire.The telephone mode resulted in a higher response rate than the postal mode and fewer men than women participated in the postal mode. Mode of administration only had a small effect on self-reports. The youngest adolescents did, in some respects, respond to the modes in a reverse pattern than the older participants.The findings support the use of the SF-36 and the HADS among persons 16-23 years of age. The strengths and weaknesses of a telephone and a postal mode to collect self-report data are discussed.Nurses should consider the findings of this study, e.g. when using self-reports to screen for health status and emotional distress and when designing research studies.

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 fi ve 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 signifi cantly 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.