Efficacy of a web-based psychoeducational intervention, Fex-can sex, for young adult childhood cancer survivors with sexual dysfunction: A randomized controlled trial.

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).

Health-related quality of life among adult patients with cancer in Uganda - a cross-sectional study.

OBJECTIVES: The study aimed to investigate the prevalence and factors associated with poor health-related quality of life in adults with cancer in Uganda. METHODS: This cross-sectional study surveyed 385 adult patients (95% response rate) with various cancers at a specialised oncology facility in Uganda. Health-related quality of life was measured using the EORTC QLQ-C30 in the Luganda and English languages. Predetermined validated clinical thresholds were applied to the instrument in order to identify patients with poor health-related quality of life, that is, functional impairments or symptoms warranting concern. Multivariable logistic regression was used to identify factors associated with poor health-related quality of life in six subscales: Physical Function, Role Function, Emotional Function, Social Function, Pain and Fatigue. RESULTS: The mean age of the patients was 48 years. The majority self-reported poor functioning ranging between 61% (Emotional Function) to 79% (Physical Function) and symptoms (Fatigue 63%, Pain 80%) at clinically concerning levels. These patients were more likely to be older, without formal education and not currently working. Being an inpatient at the facility and being diagnosed with cervical cancer or leukaemia was a predictor of poor health-related quality of life. CONCLUSION: Improvement of cancer care in East Africa requires a comprehensive and integrated approach that addresses various challenges specific to the region. Such strategies include investment in healthcare infrastructure, for example, clinical guidelines to improve pain management, and patient education and support services.

Main findings: The majority of adult patients attending specialized cancer care in Uganda report impaired physical and emotional functioning, and pain, at levels that merit clinical concern.Added knowledge: The large proportion of in- and outpatients with poor self-reported health-related quality of life indicates supportive care needs, exceeding corresponding figures from high-income settings.Global health impact for policy and action: Improvement of cancer care in East Africa requires a comprehensive approach that should include investment in healthcare infrastructure, e.g. clinical guidelines to improve pain management, and patient education and support services.

Reproductive late effects and testosterone replacement therapy in male childhood cancer survivors: A population-based study (the Fex-Can study).

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.

Perceptions of caring behaviors: Experiences of nurses in Ethiopia.

Caring is a universal phenomenon that influences nurse-patient interactions and feelings, forming the foundation of the nursing profession. How nurses perceive and experience caring in low-income settings is not well understood. Therefore, the purpose of this study was to explore Ethiopian nurses' perceptions and experiences of caring using a qualitative descriptive design. Individual semi-structured interviews were conducted with 13 nurses aged 28-57. Interviews were analyzed inductively using reflexive thematic analysis guided by the recommendations of Braun and Clarke. The analysis resulted in three themes: caring is the heartbeat of patient care, constraints to the provision of care, and ways to overcome constraints. The results revealed that nurses were committed to fulfilling their professional obligations and meeting patients' needs despite experiencing multiple constraints. The findings provide a comprehensive perspective in understanding nurses' experiences of caring. Their narratives demonstrate that they face constraints in their clinical practice, which limit the quality of care, including rotation and lack of resources. Cooperation between health policymakers and nurse authorities is essential for shifting the clinical environment from the prevailing traditional task-oriented approach to patient-centered care.

Prevalence and predictors for fertility-related distress among 1010 young adults 1.5 years following cancer diagnosis - results from the population-based Fex-Can Cohort study.

BACKGROUND: Cancer treatment during reproductive ages may negatively impact fertility and there is a need of firm knowledge about the prevalence and predictors of fertility-related distress. The aim was to examine fertility-related distress in a population-based sample of young women and men recently treated for cancer and to identify predictors for this outcome. MATERIAL AND METHODS: This nationwide cohort study included 1010 individuals (694 women and 316 men), mean age 34.5 ± 4.9 and 32.1 ± 5.5, respectively, diagnosed with breast, cervical, ovarian, testicular cancers, brain tumors or lymphoma at ages 18-39 in Sweden. Participants completed a survey 1.5-year post-diagnosis to assess fertility-related distress (RCAC), emotional distress (HADS) and self-efficacy, as well as sociodemographic and clinical factors and fertility preservation. Logistic regression was used to examine associations between explanatory factors and high fertility-related distress (RCAC subscale mean >4). RESULTS: Many participants (69% of women and 47% of men) had previous children and about half reported a wish for future children. High fertility-related distress was more prevalent among women (54%) than men (27%), and women were more likely than men to report distress concerning all but one RCAC dimension after adjustment for sociodemographic factors. Use of fertility preservation was unevenly distributed (15% of women and 71% of men) and was not associated with decreased fertility-related distress. In multivariable logistic regression models, a wish for future children, being single, not having previous children, symptoms of anxiety and low self-efficacy regarding one's ability to handle threats of infertility were associated with high fertility-related distress. CONCLUSION: This nationwide study found a high prevalence of fertility-related distress in young women and men recently treated for cancer and identified sociodemographic and psychological predictors. Fertility preservation was not found to act as a buffer against fertility-related distress, indicating the continuous need to identify strategies to alleviate fertility distress following cancer.

Patients' perceptions of caring behaviors at referral hospitals in Ethiopia: A cross-sectional survey.

Objective: The purpose of this study was to determine patients' perceptions of nurse caring behaviors and to identify factors associated with these perceptions. Methods: A cross-sectional study was conducted at three referral hospitals in Ethiopia. A consecutive sample of male and female patients (n = 652, response rate 98.8%) was interviewed using the Amharic version of the Caring Behaviors Inventory-16 (CBI-16, including four subscales: Assurance, Knowledge and skill, Respectful, and Connectedness) and the Patient Satisfaction Instrument (PSI). Socio-demographic and clinical factors associated with perceptions of caring behaviors were identified using multiple linear regression analysis. Results: Patients' perceptions of nurse caring behaviors were high (total Mean = 4.86, SD = 0.72). Behaviors related to the Assurance subscale were rated the highest. The multiple linear regression analysis result showed several socio-demographic and clinical factors statistically significantly associated with patients' perceptions of caring behaviors (total mean scores). Patients who were 40-49 years (B = -0.19, P = 0.012) and single (B = -0.13, P = 0.03) scored lower on total CBI-16 scores. Whereas, patients who had a higher educational level (B = 0.35, P = 0.001), cared for at surgery units (B = 0.11, P = 0.027), and reported having spent more time with a nurse in the past 8-h shift (B = 0.16, P < 0.001) were more likely to have higher perceptions of the care they received. The CBI-16 was positively correlated with satisfaction with received care, as measured with the Patient Satisfaction Instrument (r = 0.62, P < 0.001). Conclusion: Hospitalized patients in Ethiopia have overall high perceptions of nurse caring behaviors, especially with regard to physical-based caring, while their expectations of emotional-focused care are lower. We identified patients who were in need of care, patients aged 40-49 years and single. The time spent with nurses plays a pivotal role in patients' perceptions of nurse caring behaviors.

The role of a discussion forum within a web-based psychoeducational intervention focusing on sex and fertility-What do young adults communicate?

OBJECTIVE: This study sought to investigate interactive participation and content of a moderated discussion forum within a web-based psychoeducational intervention aimed at alleviating sexual dysfunction and fertility distress in young adults diagnosed with cancer. METHODS: The study is part of the Fex-Can Young Adult randomized controlled trial (RCT), in which young adults with self-reported sexual dysfunction or fertility distress were invited to participate. This study focuses on RCT participants that were randomized into the intervention condition. Sociodemographics and clinical characteristics of intervention participants and level of activity in the intervention were analyzed with descriptive statistics and compared between subgroups ("high" and "low" activity participants). Inductive qualitative thematic analysis was used to analyze the posts in the discussion forum. RESULTS: Of 135 intervention participants, 24% met the criteria for high activity participation. There were no statistically significant differences found in terms of clinical and sociodemographic characteristics between high and low activity participants. Ninety-one participants (67%) accessed the discussion forum, and 19 (14%) posted at least once. Posters shared intimate details of their experiences of sexuality and fertility following cancer. The thematic analysis of posts resulted in four themes: fertility fears, perceptions of the changed body, missing out on life, and importance of support and information. CONCLUSIONS: While a smaller proportion of participants posted in the discussion forum, a majority spent time reading posts (lurkers). Participants posting in the forum shared experiences of intimate relationships, body image, parenthood concerns, and support needs. The discussion forum was used by a majority of intervention participants, and provided appreciated support for those who posted in the forum. We therefore recommend similar interventions to include this opportunity for interaction and communication.

Patients' experience of undergoing maintenance hemodialysis. An interview study from Ethiopia.

BACKGROUND: People with kidney failure require renal replacement therapy in the form of dialysis or a kidney transplant for survival. Many facets of their life, both within and outside the dialysis unit, are impacted by the management of this disease. It is important to comprehend the experiences of people undergoing hemodialysis in order to improve the care provided to them. Therefore, this study aimed to explore the experiences of patients undergoing maintenance hemodialysis in Ethiopia. METHODS: A qualitative descriptive study was conducted at two healthcare facilities in Ethiopia. Individual interviews with 15 participants (men and women aged 19-63), undergoing hemodialysis in Ethiopia, were analyzed using reflexive thematic analysis. RESULTS: The analysis resulted in five themes: Feeling grateful, Facing a restricted life, a Supportive environment, Dreaming of a transplant, and Leading a hassled life. The subthemes include Trust in treatment, Faith in God, Challenging fluid and dietary restrictions, Being too fatigued to socialize, Being stigmatized, Family and social support, Supportive healthcare, Lacking a donor and sponsor, COVID-19 as a barrier, Financial constraints, Inaccessibility to care and transport and Access line implantation. Despite being dependent on a machine and having to deal with food and fluid restrictions as well as financial challenges, participants were hopeful and dreamed of a transplant. CONCLUSION: From the study's participants, it was discovered that the experiences of people with kidney failure undergoing hemodialysis were generally, considerably negative narratives. Based on the results we recommend development of multidisciplinary teams to better meet patients' physical, emotional, and social needs while undergoing hemodialysis. Such a team should also involve the patient's family members when caring for patients on hemodialysis.

Premature ovarian insufficiency and chance of pregnancy after childhood cancer: A population-based study (the Fex-Can study).

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.

Health-related quality of life among patients with end-stage renal disease undergoing hemodialysis in Ethiopia: a cross-sectional survey.

BACKGROUND: Measurement of health-related quality of life (HRQOL) enables identification of treatment-related side effects of a disease. Such aspects may negatively impact on patients' lives and should be taken into consideration in medical decision-making. In sub-Saharan Africa, research from the perspective of patients with chronic kidney disease is scarce, and it is almost non-existent in patients undergoing hemodialysis. We aimed to determine HRQOL among end-stage renal disease patients undergoing maintenance hemodialysis in Ethiopia and to identify factors associated with HRQOL. METHODS: A multi-center cross-sectional study was conducted in Addis Ababa, Ethiopia directed to all patients receiving hemodialysis due to kidney failure at 11 randomly-selected government and private hospitals/dialysis centers in the capital of Ethiopia. Data were collected by trained nurses using the KDQOL-36 instrument with five subscales measuring generic and disease-specific HRQOL. Study-specific items were used to collect socio-demographic and clinical data. Factors associated with HRQOL were examined using multivariable linear regression models. RESULTS: Four hundred eighty-one patients completed the survey through face-to-face interviews (response rate 96%; mean age 45.34 ± 14.67). The mean scores of the subscales ranged from 25.6 to 66.68 (range 0-100), with higher scores reflecting better health. Factors associated with low HRQOL included older age, female sex, no formal education, poor medication adherence, > 2 hemodialysis sessions/week, lower body mass index (< 18.5), longer duration of hemodialysis treatment (≥ 12 months), and poor social support. CONCLUSION: Patients with kidney failure undergoing hemodialysis in Addis Ababa, Ethiopia, had low HRQOL across all subscales compared to previous studies. Therefore, the implementation of guidelines is crucial to improve patients' adherence to their prescribed medications. Furthermore, establishing patient support groups and encouraging patients to use the available support resources from family members, neighbors, and friends have the potential to improve patients' HRQOL.

Psychometric evaluation of the Swedish version of the PROMIS Sexual Function and Satisfaction Measures in clinical and nonclinical young adult populations.

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 <40 years). 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.

Do young adults with cancer receive information about treatment-related impact on sex life? Results from a population-based study.

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.

Prevalence and risk factors for sexual dysfunction in young women following a cancer diagnosis - a population-based study.

BACKGROUND: Self-reported sex problems among women diagnosed with reproductive and nonreproductive cancers before the age of 40 are not fully understood. This study aimed to determine sexual dysfunction in young women following a cancer diagnosis in relation to women of the general population. Furthermore, to identify factors associated with sexual dysfunction in women diagnosed with cancer. MATERIALS AND METHODS: A population-based cross-sectional study with 694 young women was conducted 1.5 years after being diagnosed with cancer (response rate 72%). Potential participants were identified in national quality registries covering breast and gynecological cancer, lymphoma and brain tumors. The women with cancer were compared to a group of women drawn from the general population (N = 493). Sexual activity and function were assessed with the PROMIS® SexFS. Logistic regression was used to assess differences between women with cancer and the comparison group, and to identify factors associated with sexual dysfunction. RESULTS: The majority of the women with cancer (83%) as well as the women from the comparison group (87%) reported having had sex the last month (partner sex and/or masturbation). More than 60% of the women with cancer (all diagnoses) reported sexual dysfunction in at least one of the measured domains. The women with cancer reported statistically significantly more problems than women of the comparison group across domains such as decreased interest in having sex, and vaginal and vulvar discomfort. Women with gynecological or breast cancer and those receiving more intense treatment were at particular high risk of sexual dysfunction (≥2 domains). Concurrent emotional distress and body image disturbance were associated with more dysfunction. CONCLUSION: The results underscore the need to routinely assess sexual health in clinical care and follow-up. Based on the results, development of interventions to support women to cope with cancer-related sexual dysfunction is recommended.

Including a discussion forum in a web-based intervention on fertility and sexuality following cancer - Usage and content.

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).

Psychometric Properties of the Caring Behaviors Inventory-16 in Ethiopia.

Background: The Caring Behaviors Inventory-16 (CBI-16) is a comprehensive instrument measuring caring behaviors as experienced by patients. The study aimed to translate, culturally adapt and evaluate the psychometric properties of the CBI-16 among adult patients who speak the Amharic language. Methods: The measure was completed by 304 hospitalized patients. Construct validity was evaluated via exploratory factor analysis (EFA), confirmatory factor analysis (CFA), and contrasted groups' validity. Total CBI-16 scores were compared between groups that differed in self-rated satisfaction with care (Patient Satisfaction Instrument) to examine the contrasted groups' validity. Reliability was assessed using internal consistency (Cronbach's alpha). Results: The EFA suggested a four-factor model accounting for 66.1% of the total variance. The items loaded onto the subscales were similar to the CBI-24. The CFA supported the four-factor model with acceptable fit indices: normed Chi-square value 2.65 (X2 = 259.60, df = 98), SRMR = 0.06, and RMSEA = 0.07, CFI = 0.88 and TLI = 0.86. The contrasted groups' validity was supported by significantly higher CBI-16 scores reported by patients more satisfied with their care (t = 3.66, p < 0.001). The reliability of the instrument was satisfactory (Cronbach's alpha = 0.83). Conclusions: The Amharic version of the CBI-16 displayed a four-factor solution and was shown to be a valid and reliable instrument for the assessment of the perceptions of caring behaviors in Ethiopia.

Efficacy of a Web-Based Psychoeducational Intervention for Young Adults With Fertility-Related Distress Following Cancer (Fex-Can): Randomized Controlled Trial.

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

Psychometric properties of the kidney disease quality of life-36 (KDQOL-36) in Ethiopian patients undergoing hemodialysis.

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.

Translation and psychometric evaluation of chronic illness anticipated stigma scale (CIASS) among patients in Ethiopia.

BACKGROUND: Stigma is common among patients with chronic illnesses. It affects the delivery of healthcare for not addressing the psychological components and may interfere with the patient's attendance to necessary health care services. Therefore, a valid and reliable instrument to measure anticipated stigma related to chronic illness is vital to inform possible interventions. This study aimed to translate the Chronic Illness Anticipated Stigma Scale (CIASS) into the Amharic language and evaluate its psychometric properties in Ethiopia. METHODS: The CIASS was translated into Amharic language using standard procedures. The Amharic version was completed by 173 patients (response rate 96%) with chronic illness from three referral hospitals in the Amhara region. Internal consistency was examined through Cronbach's alpha. Construct validity was evaluated by confirmatory factor analysis and convergent validity by using a Pearson correlation of P-value less than or equal to 0.05. RESULTS: The internal consistency was estimated at Cronbach alpha of 0.92. By using a structural equation model, and modification indices a model fitness testing was run and shows a root mean squared error of approximation 0.049 (90% CI, 0.012-0.075). The structural validity results in 78.8% of confirmatory factor analysis showed from the extraction of the three-dimension (components). Validity tests for convergent by using Pearson correlation positively correlated with common mental distress and negatively correlated with quality of life-BREF, and the construct validity shows a good valid tool to CIASS. CONCLUSION: The Amharic language version of the chronic illness anticipated stigma scale shows a satisfactory level of reliability and validity on different psychometric measures of assessment. The tool may be useful for future researchers and patients with chronic illness in the Amharic-speaking population. Moreover, it will be used to see the psychological burden related to chronic illness and for comparison among international population groups.

Half-time evaluation of a new 4-year Ph.D. program in nursing and midwifery at the University of Gondar, Ethiopia.

A new four-year Ph.D. programme in nursing and midwifery, the first of its kind in Ethiopia, was started in 2018/2019 at the University of Gondar when eight doctoral students in nursing and midwifery entered the program. We who have been involved see this as an appropriate time to evaluate what has been accomplished to date and to look toward future possibilities. Our aim in carrying out such an evaluation and presenting our findings is in part to determine if similar programs might be developed in other similar settings and in part to learn what modifications to the present program might be considered. The key elements of a questionnaire survey with closed and open response alternatives were based on the content, structure and learning outcomes of the home university Ph.D. programme as described in the curriculum. The questionnaire responses captured changes that would be needed to maintain a fully satisfactory programme that blends onsite instruction and online access to faculty resulting in a twenty-first century blended Ph.D. programme. Improved dialogue between the home university faculty and the external supervisors is needed. The programme can provide a career pathway that midwifery and nursing educators can follow in their own country rather than having to leave to study in another country. The findings provide insight into the feasibility of extending similar Ph.D. programmes to other parts of East Africa and with the SDG 5 in mind with an increased focus on women leadership. The justification for this initiative is to meet the need for more nursing and midwifery faculty who can provide quality midwifery and nursing education in East African countries. Retention of these professionals will help to deal with the shortage of healthcare personnel and will provide better care for the general population.

Sexual dysfunction in young adult survivors of childhood cancer - A population-based study.

OBJECTIVE: To determine the prevalence of sexual dysfunction and to identify the factors associated with sexual dysfunction in young adult childhood cancer survivors. METHODS: All survivors of childhood cancer (aged 19-40 years) in Sweden were invited to this population-based study, and 2546 men and women (59%) participated. Sexual function was examined with the PROMIS Sexual Function and Satisfaction Measure. Logistic regression was used to assess the differences between survivors and a general population sample (n = 819) and to identify the factors associated with sexual dysfunction in survivors. RESULTS: Sexual dysfunction in at least one domain was reported by 57% of female and 35% of male survivors. Among females, dysfunction was most common for Sexual interest (36%), Orgasm - ability (32%) and Vulvar discomfort - labial (19%). Among males, dysfunction was most common for the domains satisfaction with sex life (20%), Sexual interest (14%) and Erectile function (9%). Compared with the general population, male survivors more frequently reported sexual dysfunction in ≥2 domains (OR = 1.67, 95% CI: 1.03-2.71), with an increased likelihood of dysfunction regarding Orgasm - ability (OR = 1.82; 95% CI: 1.01-3.28) and Erectile function (OR = 2.30; 95% CI: 1.18-4.49). Female survivors reported more dysfunction regarding Orgasm - pleasure (9% versus 5%, OR = 1.86; 95% CI: 1.11-3.13). A more intensive cancer treatment, emotional distress and body image disturbance were associated with sexual dysfunction in survivors. CONCLUSIONS: The findings underscore the need for routine assessment of sexual health in follow-up care of childhood cancer survivors and highlight that those treated with more intensive cancer treatment and who experience concurrent psychological concerns may benefit from targeted screening and interventions.