Peer2Me - evaluation of a peer supported program for adolescent and young adult (AYA) cancer patients: study protocol of a randomised trial using a comprehensive cohort design.

BACKGROUND: Developing cancer in young adulthood is a non-normative life event and associated with adverse physical, social and psychological consequences. High psychological distress is common in AYA cancer patients including anxiety, depression or fear of recurrence. At the same time, it is well known that AYA often report unmet needs for support, particularly in terms of informational exchange and emotional support from peers in order to benefit from shared experiences and enhance self-efficacy. Especially in the AYA group, interactions with other same-aged cancer patients may represent an essential resource in terms of coping with the disease, as family members and friends are often overwhelmed and struggling with helplessness. Currently, there is a lack of professional support services using peer support (e.g. psycho-oncological support, aftercare consultations, social legal counselling) or evaluated peer support interventions in Germany. Our aim is to assess the effectiveness of the Peer2Me intervention for AYAs, in which acute patients (mentees) are accompanied by an AYA survivor (mentor) over a period of three months. METHODS: A prospective Comprehensive Cohort Design with repeated measures will be used to evaluate the effectiveness of Peer2Me for AYA. A sample of 180 patients in active cancer treatment aged 18 to 39 years will be enrolled and randomized to the intervention or control condition (a single AYA-specific consultation). Following mentor training, mentees and mentors are matched by diagnosis, age, and gender. The primary outcome is self-efficacy; secondary outcomes include measures of anxiety, depression, health literacy, life satisfaction and social support life. Outcomes will be measured at baseline before the intervention (t1), immediately after completion of the three-month intervention (t2) and three months after completion the intervention (t3). For the final analyses, we will use an intention-to-treat approach (ITT) and compare patients in the assigned treatment groups. DISCUSSION: Peer2Me might be an important addition to existing professional psychosocial support services for young cancer patients. At the end of the study, a psycho-oncological intervention for young cancer patients undergoing acute treatment should be available, from which both mentors and mentees could benefit. The long-term continuity of Peer2Me should be ensured through collaboration with different partners. TRIAL REGISTRATION: The study was retrospectively registered on February 4, 2022 at clinicaltrials.gov (NCT05336318).

Changes and predictors of social support in adolescent and young adult cancer survivors-Results of a 7-year longitudinal study.

OBJECTIVE: As social support has been shown to have beneficial effects on coping with cancer, our study aims to close the research gap on perceived social support in adolescent and young adult (AYA) cancer survivors. METHODS: AYAs evaluated their perceived positive social support (PS) and detrimental interactions (DI) by completing the Illness-Specific Social Support Scale (ISSS-8) upon completion of acute treatment (t1) as well as 1 year (t2) and 7 years (t6) later. Temporal changes of social support were examined. Sociodemographic, psychological and medical factors were investigated as predictors for PS and DI by using mixed effects models. RESULTS: We analyzed data from 319 cancer survivors (74.9% women). At baseline, survivors reported an average score of 13.73 (SD = 2.52) for PS and 3.92 (SD = 2.85) for DI. Average perceived PS changed over time, while DI remained stable. Males, AYAs without a partner and AYAs with clinically meaningful anxiety or depression levels reported fewer PS. Higher effort to cope with the disease and clinically significant anxiety and depression levels were associated with more perceived DI. CONCLUSIONS: Existing social networks and perceived social support should be evaluated regularly in AYA-cancer survivorship. The identification and discussion of mental health of AYAs should also be a standard component in survivor consultations both during treatment and follow-up care, as elevated depression and anxiety levels were associated with fewer PS and more perceived DI.

Psychosocial aftercare of adolescent and young adult cancer survivors in Germany: Awareness, utilisation, satisfaction and associated factors.

AIM: This study systematically assesses the awareness of, utilisation of and satisfaction with psychosocial care for adolescents and young adult (AYA) cancer survivors in aftercare. METHODS: Survivors between 18 and 39 years were surveyed in aftercare. Awareness of, utilisation of and satisfaction with psychological counselling (PC), social-legal counselling (SLC) and other psychosocial care (OPC) were measured using self-developed questionnaires. Multivariate analyses were conducted to determine factors correlated with awareness and use of psychosocial care. RESULTS: Five hundred and fourteen survivors participated; the mean age at diagnosis was 29.6 years (SD = 6.14). 54% of cancer survivors were aware of PC, 45% of SLC and 24% of OPC. Those who possessed knowledge about these services used it to a considerable extent (63%-74%), and the majority (66%-75%) was highly satisfied. No common factors could be found that increase the likelihood of being aware of these three services (R2  = 0.028-0.138). Female gender (OR = 2.08-2.18) and high anxiety (OR = 1.19-1.38) were identified as common factors that increase the likelihood of utilising psychosocial services (R2  = 0.160-0.395). CONCLUSION: AYA who are aware of psychosocial services in aftercare are motivated to use them and express high satisfaction with use. For the utilisation of psychosocial services, anxiety and female gender can be identified as common factors. The visibility of psychosocial services for aftercare should be increased given the high number of unaware AYA survivors. The active and repeated addressing of psychosocial issues and regular provision of information (e.g., written guides on survivorship) by caregivers should be made a standard of care for AYA cancer survivors.

Sexuality and cancer in adolescents and young adults - a comparison between reproductive cancer patients and patients with non-reproductive cancer.

BACKGROUND: Sexuality is an important aspect of quality of life for adolescent and young adults that remains understudied in cancer patients. Most current knowledge about how cancer and cancer treatments can affect patients' sexuality pertains to reproductive cancer patients (breast, gynecological, male reproductive organs), whereas only little is known about how the disease affects the sex lives of patients with other types of cancer. This study examined sexual satisfaction and sexual supportive care needs among adolescent and young adult cancer patients, with a particular focus on how the type of cancer a person has is associated with these issues differently. METHODS: Five hundred seventy-seven (n = 424 females, 73.5%) patients between 18 and 39 years of age at diagnosis and representing all major tumor entities completed the standardized questionnaire. The analysis addressed the following topics: sexual satisfaction (Life Satisfaction Questionnaire), sexual supportive care needs (Supportive Care Needs Survey), and changes in sexuality (Questions on Life Satisfaction Modules). These topics were tested by mean differences between reproductive and non-reproductive cancer, equivalence testing and regression analyses. RESULTS: About one third of the patients reported being dissatisfied with their sexuality and having supportive care needs in this area. Changes in sexuality were significantly more common in women with reproductive cancers than in those who had other types of cancer (t = - 2.693, p = .007), while both groups had equivalence in scores for sexual satisfaction and sexual supportive care needs. Reproductive cancers are not more associated with deterioration of sexual satisfaction (R2 = .002, p = .243), changes in sexuality (R2 = .006, p = .070) or increased sexual supportive care needs than non-reproductive cancers (R2 = .004, p = .131). CONCLUSIONS: The results indicate that about a third of adolescents and young adults with both reproductive but also with non-reproductive cancer experience sexual dissatisfaction in similar measure. An equal percentage of these patients also express a desire to receive supportive care in this area. Consequently, health care professionals should address issues of sexuality and cancer as a matter of routine when caring for young adults even when patients have a non-reproductive cancer.

Anxiety and depression in young adult German cancer patients: Time course and associated factors.

OBJECTIVE: Cancer in young adulthood is a nonnormative and critical life event. The experience of having cancer can have a strong impact on the mental health of young adults. This study investigated anxiety and depression in young adult cancer patients, examining changes over time and determining associated factors. METHODS: Young cancer patients (18-39 years at time of diagnosis, diagnosis less than 4 years) were examined. Anxiety and depression were measured at two time points (t2 = 12 months after t1) using the Hospital Anxiety and Depression Scale (HADS). Regression analyses were conducted to determine whether sociodemographic, medical, and/or psychosocial factors (social support, adjustment to the illness, unmet supportive care needs) were associated with patients' anxiety and depression. RESULTS: Five hundred fourteen young cancer patients (mean age 29.6 years, 75.1% women) completed both questionnaires. A higher proportion showed elevated levels of anxiety (t1: 42.2%; t2: 45.3%) than of depression (t1: 16.9%; t2: 17.7%), and no significant changes in anxiety and depression levels over time were observed. Psychosocial factors explained a major proportion of the variances for anxiety and depression levels at both time points (adjusted R2 between.50 and.59). Furthermore, significant associations were found for anxiety (t1) with gender (women↑); anxiety (t2) and depression (t2) with sick leave (sick leave yes↑); depression (t2) with time since diagnosis (longer time↑). CONCLUSION: Psychological distress among adolescents and young adults (AYA) manifests particularly as anxiety. Strong associations between anxiety/depression and psychosocial factors, as well as the stability of psychological distress over time, clearly illustrate the need for psycho-oncological care in this patient group.

Perceived social support and associations with health-related quality of life in young versus older adult patients with haematological malignancies.

BACKGROUND: This study compared the perceived social support of young and older adult cancer patients, examining possible influencing factors as well as associations with health-related quality of life. METHODS: A total of 179 young patients (18-39 years) and 200 older adult patients (> 70 years) with haematological malignancies completed questionnaires on their perceived social support (ISSS-8, scales: Positive Support and Detrimental Interactions, range 0-16) and health-related quality of life (EORTC QLQ-C30). Tests for mean differences, correlations and regression analyses to determine associated variables of social support were performed. RESULTS: No difference was reported between young (M = 13.40, SD = 2.81) and older adult patients (M = 13.04, SD = 3.82; p = .313) for Positive Support. However, young patients (M = 4.16, SD = 3.10) reported having had more Detrimental Interactions than older patients did (M = 1.63, SD = 2.42; p < .001, Cohen's d = .910). Comparison of the EORTC QLQ-C30 Function scales showed poorer outcomes for young patients on Emotional, Cognitive and Social Functions and a higher outcome on Physical Function compared with older adult patients. Regression analyses indicated that age (young vs. older adult patients) significantly explained proportions of variance in all models, with young age having a negative impact on Emotional, Cognitive and Social Functions and a positive impact on Physical and Role Functions compared with old age. Significant associations between Detrimental Interactions and all the scales examined except Cognitive Function were found. CONCLUSIONS: The difference in negative perceptions of social support in young vs. older adult patients and its impact on health-related quality of life emphasises the necessity of differentiating between positive and negative social support. Negative interactions should be addressed through psychosocial care, particularly with young cancer patients.

Life satisfaction in young adults with cancer and the role of sociodemographic, medical, and psychosocial factors: Results of a longitudinal study.

BACKGROUND: Being diagnosed with and treated for cancer often has a strong impact on the life satisfaction (LS) of adolescents and young adults (AYAs). The current study investigated LS in AYA patients with cancer and determined associated factors. METHODS: Young patients (those aged 18-39 years at the time of diagnosis) with all malignant cancer sites and with a diagnosis made within the last 4 years were assessed. LS was measured at 2 measuring time points using the Questions on Life Satisfaction (FLZ-M). Differences in the FLZ-M and the 10 subdomains (friends/acquaintances, leisure activities/hobbies, health, income/financial security, work/profession, housing situation, family life, children/family planning, partnership, and sexuality) between the 2 time points were calculated. Multiple regression analyses were conducted to determine factors associated with LS. RESULTS: A total of 514 patients (386 of whom were women) with a mean age at diagnosis of 29.6 years participated at both measurements. LS increased significantly in 5 domains with a small effect (Hedges g, 0.17) noted over time. The subdomains with the lowest LS were financial and professional situation, family planning, and sexuality. Significant associations with LS were found at baseline for sociodemographic, medical, and psychosocial variables (explained variance [R2 ]baseline = 0.41). At follow-up, psychosocial factors (positive social support, not having detrimental interactions, and lower perceived adjustment to the disease) remained most important for higher LS controlled for LS at baseline. Neither sociodemographic (except partnership) nor medical factors played a role (R2follow-up = 0.54). CONCLUSIONS: Of all the variables examined, social support was found to be the most decisive factor associated with LS at both time points. With regard to LS, social support and adjustment to illness should be given more consideration in the medical care of AYA patients with cancer.

Psychometric properties of the fatigue questionnaire EORTC QLQ-FA12 and proposal of a cut-off value for young adults with cancer.

BACKGROUND: Young adult patients with cancer have to deal with their disease in an eventful phase of life. A common side effect of cancer and its treatment is cancer-related fatigue (CRF), a phenomenon which can thwart successful coping with developmental tasks. The aims of this study were to assess the psychometric properties of the EORTC QLQ-FA12, a new instrument for assessing physical, emotional and cognitive fatigue, in young adults with cancer, and to propose a cut-off value that indicates a need for further more specific diagnostics. METHODS: In a sample of young adults who were first diagnosed with cancer between the ages of 18 and 39 years old, we assess the composite and item reliabilities as well as discriminant validity of the subscales for the EORTC QLQ-FA12. We also discuss two possible ways to calculate a summarizing score when conducting a receiver operating characteristic (ROC) analysis to find the cut-off value. RESULTS: The EORTC QLQ-FA12 fit the sample (CFI = 0.96, SRMR = 0.04), had discriminant validity regarding its subscales and every subscale showed convergent validity (composite reliabilities were 0.92 for physical, 0.89 for emotional and 0.74 for cognitive fatigue). The sum of the first ten items with a range of 0 to 30 revealed a cut-off value of twelve or more with 91% sensitivity and 77% specificity. CONCLUSION: The new instrument EORTC QLQ-FA12 is able to distinguish between physical, emotional, and cognitive fatigue in young adult patients. It enables us to study different concepts of general fatigue without the need for additional items, and can be used as a screening instrument for young adults. Future research should investigate the multidimensional character of CRF.

Life situation and psychosocial care of adolescent and young adult (AYA) cancer patients - study protocol of a 12-month prospective longitudinal study.

BACKGROUND: In recent years, there has been an increased research focus on adolescent and young adult (AYA) cancer patients. Few longitudinal studies have taken into consideration the specifics of their life situation and the status of psychosocial care services for this population. Our ongoing study aims to determine the psychosocial life and supportive care situation of AYA cancer patients, to describe risk groups, and to develop recommendations for their psycho-oncological care and support. METHODS: The AYA-Leipzig study (AYA-LE) is a German prospective, longitudinal, study examining AYAs´ life situation (e.g. psychological distress, quality of life) and psychosocial care (e.g. evaluation and preferences, support needs) using two measurement points, namely, upon acute treatment completion (baseline) and 12 months later. N = 577 AYA cancer patients aged between 18 and 39 years at diagnosis, and representing all major tumor entities fill out a standardized questionnaire (online or by post), mainly based on validated instruments. AYA-specific concerns (e.g. family planning, sexual and reproductive health, social support, health behavior) will explicitly be considered. Participants are recruited in 16 German acute care hospitals, four rehabilitation clinics, and from two German state tumor registries. DISCUSSION: In summary, our longitudinal study will create a large database encompassing all malignant tumor entities and including detailed information about the distress and quality of life, specific problems, and specific support needs of AYA cancer patients at two different points in time post-diagnosis. The information we gather about existing psychosocial care and patient preferences and desires concerning psycho-oncological care will be used to develop recommendations for psycho-oncological care providers.

How do young adults with cancer perceive social support? A qualitative study.

The social support of adolescents and young adults (AYA) has been studied very little. 18 interviews were conducted and evaluated with content analysis (inter-rater reliability = 0.87). All of the young adult cancer patients interviewed reported having received social support from at least two people (family, friends, and/or partner). Forms of emotional and instrumental support were more often reported than informational support. 12 participants described having received nonhelpful support, especially in areas of dealing with their situation, limited social participation, and distancing of friends. The participants considered social exchanges with other young adult cancer patients an important source of social support. AYA cancer patient networking should be improved.

[Cancer and Career? - A Qualitative Study of Job Status of Young Adult Cancer Survivors]. / Krebs und Karriere? ­ Eine qualitative Untersuchung zur beruflichen Situation und Integration junger Erwachsener mit Krebs.

Purpose: To examine the impact of cancer on work and education for AYA. Collect information about AYA's return to work/return to study. Methods: 18 AYA (10 female) aged 18 to 39 (m=27 years) at time of diagnosis completed a semi-structured interview. Qualitative content analysis was used to generate results. Results: 11 of 18 AYA had already returned to work/study. Flexible structures and emotional support of colleagues and managers were reported being helpful. 10 AYA planed or had already reduced job tasks, hours of work or further education. This was mostly compelled by physical disabilities due to cancer or treatment. Most AYA asked for more support within the social insurance system. Conclusions: Cancer often leads to changes in work or education. More social and vocational counseling to support AYA's rehabilitation process seems to be necessary.

Patient-Physician Communication and Knowledge Regarding Fertility Issues from German Oncologists' Perspective-a Quantitative Survey.

Many people diagnosed with haematologic malignancies are of child-bearing age. Typical treatment courses pose a high risk of infertility, and a lot of people affected by this are in the midst of starting or growing their families. Thus, it is crucial that they are well informed about fertility preservation options and can discuss these with an oncologist early on in the development of their treatment plans. Unfortunately, however, this does not always happen. One hundred twenty oncologists from 37 German adult clinical facilities were surveyed regarding their discussions with young patients about fertility, family planning, and fertility preservation. Almost all of them said that they consider fertility preservation to be an important issue. They also reported several factors as having an influence on the likelihood and practicability of discussing these subjects. Most knew about the existence of cryoconservation of germ cells and the use of GnRH analogues (95 %), but only half of them claimed to have a thorough understanding of these options. Many said they would like to learn more about this and that informational brochures could be helpful. Even though many oncologists do have good working knowledge of the subject, patients of reproductive age are not yet consistently given comprehensive information about the options available to them. To improve oncologists' knowledge of reproductive medicine, cooperation with fertility specialists should be facilitated, and informational leaflets should be made available both to patients and their medical care providers.

Sexuality and romantic relationships in young adult cancer survivors: satisfaction and supportive care needs.

OBJECTIVE: In recent years, psycho-oncology has focused more and more on adolescents and young adults with cancer (AYA). Many studies have concentrated on fertility issues in AYAs, but romantic relationships and sexuality have only been researched to a limited extent. This cross-sectional study examined AYAs' quality of relationships and sexuality satisfaction thereby identifying sex differences. METHODS: Ninety-nine cancer patients (N = 33 males) diagnosed between 15 and 39 years who were in a romantic relationship at the time of the survey completed questionnaires on their relationship (Partnership Questionnaire), sexuality (Life Satisfaction Questionnaire), and sexuality needs (Supportive Care Needs Survey). Test for mean differences and regression analyses to determine associated variables were performed. RESULTS: Seventy-six percent of AYAs (N = 75) rated their relationship quality as high. About 64% of patients reported having less sexual intercourse since diagnosis, more women than men (72% vs. 45%; p = .011). The need for support was strongest for changes in sexual feelings (N = 38; 38.3%). Duration of relationship (ß = -0.224), being on sick leave (ß = 0.325), and satisfaction with sexuality (ß = 0.409) were associated with satisfaction with relationship (R(2) = 0.256). Satisfaction with sexuality (R(2) = 0.344) was regressed on physical function (ß = 0.419), satisfaction with relationship (ß = 0.428), and male gender (ß = -0.175). Sexuality need (R(2) = 0.436) was associated with fatigue (ß = 0.232) and satisfaction with sexuality (ß = -0.522). CONCLUSION: Although they reported high satisfaction with their relationships, AYA patients experienced sexual problems and need support with sexual issues. As a substantial proportion of patients felt stressed because of sexual changes, communication and interventions addressing post-cancer sexuality, particularly in women, are indicated.

[Discussing Fertility and the Desire to have a Child in Hemato-Oncology--A Qualitative Survey]. / Die Thematisierung des Kinderwunsches und der Fertilität in der Hämato-Onkologie--eine qualitative Ärztebefragung.

OBJECTIVES: Adolescent and young adult patients in hemato-oncology have often not fulfilled their desire to have a child, which is threatened by the malignancy and it's treatment. The oncologists have to inform their patients about possible infertility and fertility preservation. METHODS: 25 oncologists were interviewed to discuss the desire to have a child and fertility issues with the patients. Afterwards the semi-structured interviews were transcribed and analyzed according to the qualitative content analysis of Mayring. RESULTS: The following issues could be identified in the interviews: current desire to have a child; possible threat of fertility; fertility preservation and their implementation; contact to a reproduction facility; sexuality and contraception during therapy. Most of the oncologists (n=19) stated to discuss the fertility aspects in the first session. 14 oncologists stated that they have enough knowledge about fertility preservation. To improve the conditions for a discussion the oncologists wished to have more information (n=10) or patient leaflets (n=11) about fertility preservation. DISCUSSION: Addressing the desire to have a child and fertility aspects of adolescent and young adult patients in hemato-oncology have already a high priority. Further studies should analyze the discussion from patient perspective and determine patient needs in this regard.

[The extension of the Leipzig questionnaire of motives to have a child (LKM) for use in oncology--test construction and psychometric review]. / Erweiterung des Leipziger Fragebogens zu Kinderwunschmotiven (LKM) für den Einsatz in der Onkologie--Testkonstruktion und psychometrische Überprüfung.

Many young cancer patients had not completed family planning at the time of diagnosis. A cancer disease may change procreative attitudes and the development of specific motivations of having a child (for and against) is possible. This paper addresses the extension of the Leipzig questionnaire on motives for wanting children (LKM) in the context of cancer. Specific motivations of cancer patients are presented and test-statistically verified. Based on previous findings and a qualitative questioning (patients, professionals) items for specific motivations were developed and pre-tested. The revised version (20 items) was tested on a sample of 175 young cancer patients. Good to adequate item discrimination parameter and reliability (α=0.86) were shown. The factor analysis revealed the 2 scales "PRO - motivations for having children after cancer" and "CON - motivations against having children after cancer". These additional scales of specific motivations allow for a reliable and economical measure of motivations to have a child in young cancer patients. In the future the scales can be also used for other serious physical disease in young adulthood.

Gender-specific quality of life after cancer in young adulthood: a comparison with the general population.

PURPOSE: Over the last years, adolescents and young adults with cancer (AYA) have moved strongly into scientific focus. However, there have only been a few studies about the quality of life of the AYA group, and gender differences have very rarely been examined. METHODS: A cross-sectional study was conducted with young adult cancer patients who were aged 18-39 years at the time of survey and had completed their acute treatment. We used the quality of life questionnaire European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30). The EORTC QLQ-C30 contains five function scales (physical, role, emotional, cognitive and social), nine symptom scales and a global quality of life scale. The patient sample was compared to a gender- and age-matched representative sample (REP). RESULTS: Compared to the general population (N = 585), significantly poorer quality of life (p = .001) was observed for the 117 young cancer patients (40 male, 77 female) on all scales and items of the EORTC QLQ-C30. Analyses of variance with the factors group (AYA vs. REP) and gender showed interaction effects for the physical (p < .012), emotional (p < .029) and cognitive function scales (p < .008) and fatigue (p < .026) as well as for the items insomnia (p < .011), constipation (p < .037) and financial difficulties (p < .026). The pattern of the interaction was that female cancer patients reported the lowest quality of life outcomes. The same effects were found for the three calculated sum scales function, symptom and total. CONCLUSIONS: Results clearly indicate that young adult cancer patients have a reduced quality of life in comparison with the general population even long after the treatment of their disease is complete. Women had a lower quality of life than men. Age-specific interventions should be offered that lead to improvements in quality of life for this age group. And future studies should clarify what factors lead to women's quality of life being worse than men's.

Fear of Cancer Progression: A Comparison between the Fear of Progression Questionnaire (FoP-Q-12) and the Concerns about Recurrence Questionnaire (CARQ-4).

As cancer patients often suffer from fear of cancer progression (FoP), valid screening for FoP is of high relevance. The aims of this study were to test psychometric properties of two FoP questionnaires, to determine their relationship to other anxiety-related constructs, and to analyze the impact of sociodemographic and clinical factors on the FoP. Our sample consisted of n = 1733 patients with mixed cancer diagnoses. For measuring FoP, the Fear of Progression questionnaire (FoP-Q-12) and the Concerns About Cancer Recurrence Questionnaire (CARQ-4) were used. The mean scores of the FoP-Q-12 and the CARQ-4 were 30.0 ± 10.4 and 16.1 ± 10.8, respectively, indicating relatively high levels of FoP. Both questionnaires showed excellent internal consistency coefficients, α = 0.895 and α = 0.915, respectively. The correlation between the two FoP questionnaires was r = 0.72. Female patients reported more FoP than male patients (d = 0.84 and d = 0.54, respectively). There was a nonlinear age dependency of FoP, with an increase found in the age range from 18 to 50 years and a decrease in the older age range. Radiation, chemotherapy, and antibody therapy, but not surgery, lead to an increase in FoP. Both questionnaires show good psychometric properties and can be recommended for use in an oncological routine. Female patients and patients in the middle-age range deserve special attention from healthcare providers.

Sexuality, fertility, family planning, family life, and partnership in young breast cancer patients: a longitudinal study.

Objectives: Adolescent and young adult (AYA) breast cancer patients are often faced with sexuality-related problems. Since healthcare providers are often unfamiliar with problems specific to AYA cancer this topic is too little integrated into routine oncological care. The objective of this study was to analyze sexuality, fertility, family planning, family life, and partnership regarding satisfaction and supportive care needs in AYA breast cancer patients. Methods: A total of 139 AYA breast cancer patients were examined twice, 1 year apart. The patients were asked to complete several questionnaires and to answer multiple questions about satisfaction with sexuality, fertility, family planning, family life, and corresponding supportive care needs in these domains. Results: While the patients were largely satisfied with their family life and partnerships, they were less satisfied with their sexuality and family planning. Only small mean score changes were observed in these variables over the course of a year. Being a parent already and having the possibility of further completing family planning were strongly associated with higher satisfaction and lower supportive care needs in these domains. Satisfaction was generally negatively associated with supportive care needs. Older age was predictive of lower satisfaction with sexuality at follow-up. Conclusion: AYA cancer patients deserve special consultations concerning the impact of cancer and treatment on their sexuality and fertility, and it is especially important that women who have yet to complete their family planning be actively offered information and support concerning sexuality and fertility protection before beginning treatment.

Changes, challenges and support in work, education and finances of adolescent and young adult (AYA) cancer survivors: A qualitative study.

PURPOSE: An increasing number of adolescents and young adults (AYA) are becoming cancer survivors and are dealing with long-term effects of the disease and its treatment. We aimed to collect detailed self-reported information about the areas of work, education, and the financial situation of AYA survivors after acute treatment. We further examined sources of support that were perceived as particular helpful. METHOD: We conducted semi-structured interviews with a sample of 11 AYA cancer survivors (on average 5 years from diagnosis; mean age at diagnosis = 25.7 years) that had been recruited for the AYA-Leipzig longitudinal study. Interviews were transcribed and data were analysed using qualitative content analysis. RESULTS: The following themes emerged as relevant: (1) career modifications and job loss, (2) career interruptions and delays, (3) uncertainty in the return-to-work process, (4) reduced work ability, (5) discrimination at the workplace, (6) changes in the personal importance of work and (7) financial burdens. Sources of considerable support included relatives as well as German social security institutions. CONCLUSIONS: Health care providers should address the specific risk of a financial burden and the somewhat complex social legal situation of young adult survivors after cancer diagnosis. AYA cancer survivors need age-specific comprehensive cancer survivorship support programs. These should accompany them in the long term and be targeted to the individual need for career modification or reorientation - even after the completion of cancer treatment and rehabilitation.

Work ability and cognitive impairments in young adult cancer patients: associated factors and changes over time-results from the AYA-Leipzig study.

PURPOSE: Although young adults represent a significant portion of the working population, little is known about the work ability and cognitive impairments in adolescent and young adult (AYA) cancer patients (including the long-term course) following cancer treatment. METHODS: As part of the AYA-Leipzig study, we surveyed AYA cancer survivors (aged 18-39 years at diagnosis; time since diagnosis ≤ 4 years, including all cancer diagnoses) at two time points (t2 = 12 months after t1). Work ability (Work Ability Index, WAI-r) and cognitive impairments (Copenhagen Psychosocial Questionnaire, COPSOQ) were compared at both time points. We analysed predictors for work ability at, on average, 2 years post cancer diagnosis (t2) by using multivariate regression analyses. RESULTS: A total of 502 patients (74.7% women) participated in both measurements. Mean work ability increased significantly from t1 (6.0; SD = 2.3) to t2 (6.8; SD = 2.2) (t = -9.3; p < 0.001). As many as 380 (76%) AYA cancer survivors reported reduced work ability at t1; 1 year later, this still applied to 287 (57%) of them. Decreased work ability (t2) was associated with more cognitive impairment, higher effort coping with the disease, comorbidities, sick leave > 6 months (since diagnosis), and having children (adj R2 = .48). Cognitive impairments occurred in approximately every fifth patient at both surveys. CONCLUSIONS: Achieving maximum work ability is a major challenge for AYAs. Our results show the need for multimodal cancer survivorship and rehabilitation programmes with a special focus on improving cognitive and psychosocial functioning. IMPLICATIONS FOR CANCER SURVIVORS: AYAs with cancer should receive targeted occupational counselling early in the course of the disease.