[Young Adult Cancer Patients (AYA): Preferences for Outpatient Psychosocial Care and Gender-Specific Differences - Results from the AYA-LE study]. / Junge Erwachsene mit Krebs (AYA): Präferenzen und geschlechtsspezifische Unterschiede in der ambulanten psychosozialen Versorgung ­ Ergebnisse der AYA-LE Studie.

OBJECTIVE OF THE STUDY: To investigate the importance of individual topics in outpatient care services and the preferences for their design from the perspective of young adults with cancer (AYA="adolescents and young adults") in Germany. METHODOLOGY: A total of 514 AYAs aged 18-39 years were surveyed twice over a 12-month period (t1=immediately after acute treatment, t2=12 months post-treatment) regarding the importance and satisfaction with topics such as anxiety, the impact of the illness on partnerships/family and social environment, future perspectives, personal coping strategies, sexuality, and desire for children/fertility, as well as the types of care services. The subjective importance and satisfaction with the care topics and services were analyzed using variance and moderator analyses. RESULTS: The most important topics for care services were future career prospects (M=3.22, SD=1.56), social impact (M=3.19, SD=1.54), and personal coping strategies (M=3.52, SD=1.46). The greatest dissatisfaction was noted in the areas of sexuality (M=2.01, SD=1.59) and desire for children/fertility (M=2.08, SD=1.72). At time t2, relaxation techniques (M=3.46, SD=1.36) and psychological counseling (M=3.43, SD=1.46) were the most desired care services. Female AYAs rated psychological counseling (F[1.199)=9.21, p=0.003), social counseling (F[1.221]=6.60, p=0.011), creative therapy options (F[1.219]=21.74, p<0.001), support groups (F[1.215]=4.29, p=0.040), patient education (F[1.210]=6.96, p=0.009), and relaxation techniques (F[1.194]=23.68, p<0.001) significantly more important than male AYAs. CONCLUSIONS: The study highlighted several areas of dissatisfaction with the current outpatient care services for AYAs. The results demonstrate the need to incorporate cross-sex and gender-specific care preferences of AYAs to improve outpatient psychosocial care. A specific set of AYA-care services should be designed and implemented to address the aforementioned psychosocial topics, which include sexuality and the desire for children/fertility. It is also crucial for outpatient practice to raise awareness among the involved professional groups. Further research is required to gain a deeper understanding of sex differences.

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.

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.

Quality of life in urologic cancer patients: importance of and satisfaction with specific quality of life domains.

PURPOSE: Quality of life (QoL) has been the subject of increasing interest in oncology. Most examinations of QoL have focused on health-related QoL, while other factors often remain unconsidered. Moreover, QoL questionnaires implicitly assume that the subjective importance of the various QoL domains is identical from one patient to the next. The aim of this study was to analyze QoL in a broader sense, considering the subjective importance of the QoL components. METHODS: A sample of 173 male urologic patients was surveyed twice: once while hospitalized (t1) and once again 3 months later (t2). Patients completed the Questions on Life Satisfaction questionnaire (FLZ-M), which includes satisfaction and importance ratings for eight dimensions of QoL. A control group was taken from the general population (n = 477). RESULTS: Health was the most important QoL dimension for both the patient and the general population groups. While satisfaction with health was low in the patient group, the satisfaction ratings of the other seven domains were higher in the patient group than in the general population. The satisfaction with the domain partnership/sexuality showed a significant decline from t1 to t2. Multiple regression analyses showed that the domains health and income contributed most strongly to the global QoL score at t2 in the patient group. CONCLUSION: Health is not the only relevant category when assessing QoL in cancer patients; social relationships and finances are pertinent as well. Importance ratings contribute to a better understanding of the relevance of the QoL dimensions for the patients.

Personal condition but social cure: Agentic ingroups elevate well-being in chronically ill patients through perceptions of personal control.

OBJECTIVES: Social-cure research has shown that ingroup identification can be beneficial for personal health and well-being. Initial evidence for healthy participants suggests that this might be due to group membership providing a sense of personal control. In this research, we investigate this pathway for chronically ill patients, assuming that any ingroup (even patient identity) can serve as social cure by increasing control as long as the ingroup is perceived as agentic (i.e., effective). DESIGN: We conducted six correlational field studies with patients suffering from different chronic conditions, e.g., cancer (Ntotal = 795). METHODS: All participants were asked about one specific ingroup, e.g., their self-help group. Our main measures were ingroup identification, ingroup agency, personal control and well-being, as well as self-esteem and social support (both discussed as alternative mediators). We performed simple mediation and/or moderated mediation analyses for each study and across studies (merging Studies 2-6). RESULTS: Overall, the impact of ingroup identification on personal well-being was uniquely mediated via personal control (Studies 1, 2, 3, 6) but, as expected, only for those perceiving their ingroup as highly agentic (Studies 4, 5, 6). CONCLUSIONS: Ingroup agency is a boundary condition for the control-based pathway of the social cure effect supporting the model of group-based control. This has practical implications for clinical interventions with chronically ill patients.

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.

Psychosocial Long-Term Effects of Young Adult Cancer Survivors: Study Protocol of the Longitudinal AYA-LE Long-Term Effects Study.

Background: About 3% of new cancer cases affect young adults aged between 15 and 39 years. The young age, the increasing incidence and the relatively good prognosis of this population lead to the growing importance to investigate the psychosocial long-term and late effects. The aims of the AYA-LE long-term effects study are: first, to assess the temporal course and related factors of life satisfaction and psychological distress of adolescent and young adult (AYA) cancer survivors; and second, to examine a specific topic in each of the yearly surveys in a more differentiated way. Methods: This study represents a continuation of the longitudinal AYA-LE study. The existing sample of AYA cancer patients (t1: N = 577; t2: N = 514; aged between 18 and 39 years at diagnosis; all major tumor entities) was extended by four further survey points (t3: 2018, t4: 2019, t5: 2020, t6: 2021). In addition, a comparison sample of young adults without cancer was collected. We measured longitudinal data for outcomes such as quality of life, psychological distress, and fatigue with standardized questionnaires. Furthermore, each survey point included a different cross-sectional topic (e.g., health behavior, occupational situation, and compliance). Discussion: The AYA-LE long-term effects study will show the long-term consequences of cancer in young adulthood. We expect at least complete data of 320 participants to be available after the sixth survey, which will be completed in 2021. This will provide a comprehensive and differentiated understanding of the life situation of young adults with cancer in Germany. The findings of our study enable a continuous improvement of the psychosocial care and specific survivorship programs for young cancer patients.

Health Behavior and Associated Factors in Young Adult Cancer Patients.

Objectives: Having cancer in young adulthood increases the risk of adverse long-term health effects. These risks can be influenced by one's health behavior (HB). The aim of this study is therefore to investigate the presence of health behavior in adolescents and young adults (AYAs) and to identify associated factors. Design: Young cancer patients (18-39 years old at time of diagnosis) were surveyed at baseline and 12 months later via online or as a paper-pencil version. Methods: A spectrum of indicators for HB was assessed via seven items from the Questionnaire of Multiple Health Behavior (MHB). Multiple linear regression analyses were conducted to determine factors associated with patients' HB indicators. Results: Five-hundred and fourteen AYAs (75% women) reported the highest level of health-conscious behavior for "avoidance of consumption of nicotine," "follow medical recommendations," and "being considerate in road traffic." Less health-conscious behavior was reported for "keeping an appropriate and balanced diet" and "physical activity." Significant improvements from baseline to the follow-up were observed for "regularly attending health screening" (Hedges' g = 0.44). The analyzed factors explained up to 10% of the HB indicators. Women reported significantly more health-conscious behavior than men in four out of seven HB indicators. Higher quality of life (QoL) was associated with more health behavior in three out of seven HB indicators. Conclusion: Findings show a predominantly health-conscious lifestyle in AYA cancer patients, though we also found harmful behavior which needs to be better approached-e.g., through improving AYAs' health education. AYA men should be particularly targeted in specific prevention and health promotion measures. Future work should identify other factors associated with HB to evaluate targets for intervention.

Do patients suffering from chronic diseases retrospectively overestimate how healthy they were before they fell ill?

Background/Objective: To examine the impact of a disease on a person's subjective health state, patients are often asked to assess their current health state and to retrospectively assess how healthy they were before they fell ill. The objective of this study was to test whether patients generally overestimated the quality of their pre-disease health. Method: Six samples of patients with chronic diseases (cancer patients, cardiovascular patients, and patients diagnosed with sarcoidosis, N between 197 and 1,197) were analyzed. The patients assessed their current health states and their health states at the time before diagnosis. The retrospective scores were compared with matched data from general population studies. Results: In three of the six studies, the retrospective health ratings of the patients were significantly higher than the general population norms (effect sizes between 0.24 and 0.46), two studies yielded nonsignificant effects, and in one study there was an opposite trend. The general overestimation of pre-disease health was more pronounced in older patients as compared with younger ones, and it was more pronounced when global health/quality of life was to be assessed. Conclusions: Retrospective assessments of pre-disease health states are not appropriate for assessing disease-related changes in a person's health state.

Antecedentes/Objetivo: Cuando se quiere examinar el impacto de una enfermedad en la percepción de salud de una persona se pide a la misma evaluar su estado actual y retrospectivamente evaluar también como era su salud antes de enfermar. El objetivo de este estudio era comprobar si los pacientes generalmente sobreestiman la calidad de su salud pre-enfermedad. Método: Seis muestras de pacientes con enfermedades crónicas (pacientes con cáncer, enfermedad cardiovascular y sarcoidosis, n entre 197 y 1.197) fueron analizadas. Los pacientes evaluaron su estado de salud actual y su estado de salud antes del diagnóstico. Los puntajes retrospectivos fueron comparados con datos pareados de estudios con la población general. Resultados: En tres de los seis estudios los puntajes retrospectivos de salud de los pacientes fueron significativamente más altos que la norma poblacional (tamaños del efecto entre 0,24 y 0,26), dos estudios mostraron efectos no significativos y uno de los estudios mostró la tendencia opuesta. La sobreestimación de la salud fue más pronunciada en pacientes mayores comparados con pacientes jóvenes. Conclusiones: Las evaluaciones retrospectivas de estados de salud pre-enfermedad no son apropiadas para evaluar cambios relacionados con la enfermedad en el estado de salud de una persona.

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.

Return to Work and Employment Situation of Young Adult Cancer Survivors: Results from the Adolescent and Young Adult-Leipzig Study.

Purpose: Although cancer often impacts work issues in patients, little is known about changes in the employment situation of adolescent and young adult (AYA) cancer survivors. Materials and Methods: We surveyed AYA cancer patients (18-39 years at diagnosis, diagnosis ≤4 years) using as set of validated self-report measures. By using multivariate and regression analyses, we analyzed employment status prediagnosis (in retrospect) and return to work (RTW) rate about 2 years postcancer diagnosis and related predictors. We compared work-related characteristics (occupational position, weekly working hours, and type of employment contract) at both time points. Cancer-related financial distress (European Organization for Research Treatment of Cancer-Quality of Life Questionnaire [EORTC QLQ-C30]) was assessed. Results: A total of 505 AYAs (mean age at diagnosis 29.7 years) completed the questionnaire. After an average of 2 years postcancer diagnosis, 83.4% among those being employed at the time of diagnosis (n = 355) had returned to work, 2.8% were on vocational training, 4.5% were unemployed, 4.2% were disabled due to reduced work capacity, and 5.1% were not employed for other reasons. For 158 of 505 AYAs (31.3%), employment status had changed since diagnosis. Significant changes of work-related characteristics were found for the weekly working hours (Matdiagnosis = 35.8; standard deviation [SD] = 7.4; Mt2 = 34.7; SD = 8.2; p = 0.004). Twenty-four percent of the RTW patients and 68% of patients not RTW reported cancer-related financial distress. Patients with comorbid diseases, having hematological cancer or sarcoma, were less likely to RTW. Conclusion: Most AYAs returned to work in the medium term, often by reducing weekly working hours. Since AYAs state significant cancer-related financial distress, even after RTW, it seems particularly relevant to provide financial support and occupational counseling.

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.

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.

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.

Unmet supportive care needs in young adult cancer patients: associations and changes over time. Results from the AYA-Leipzig study.

PURPOSE: Coping with cancer at a young adult age (AYA) is a challenge for many patients and raises support needs. We aim to examine unmet supportive care needs and to investigate predictors of and changes in unmet needs over time. METHODS: We surveyed AYAs (18-39 years at time of diagnosis, diagnosis < 4 years) at two time points (t2 = 12 months after t1) using the Supportive Care Needs Survey (SCNS-SF34) among other validated measures. We conducted multiple hierarchical regressions to identify sociodemographic, medical and psychosocial predictors of unmet needs. RESULTS: A total of 514 AYAs (386 women) with a mean age of 29.6 years participated at both times. Psychological needs (Mt1 = 35.7; Mt2 = 32.09; p = 0.001) and informational needs (Mt1 = 32.18; Mt2 = 29.04; p = 0.021) were the most often reported unmet needs at both measurements and decreased slightly at t2. All other SCNS domains, except for patient care, remained stable over time. Higher supportive needs were associated with greater levels of effort to cope with the disease at both times in all domains. Older age and female gender were significantly associated with two and one of six domains, respectively, at t1 and t2. CONCLUSIONS: AYAs reported primarily unmet psychological and informational needs, which were stable over time and indicated that AYAs do not have sufficient access to the support they need. The degree of effort to cope with cancer plays a key role in terms of unmet support needs. IMPLICATIONS FOR CANCER SURVIVORS: Regular screening for this variable in acute and especially follow-up care settings could pave the way for clinicians to offer more targeted support.

Cancer-Related Fatigue and Associated Factors in Young Adult Cancer Patients.

Purpose: Cancer-related fatigue (CRF) is a highly burdensome and long-lasting symptom of cancer and its therapy. This study aims to examine the severity of CRF in its different dimensions and to assess medical and sociodemographic factors associated with CRF in young adults with cancer (adolescents and young adults [AYAs]). Methods: Patients with malignant cancer (diagnosed within the last 4 years) aged 18-39 years at diagnosis were assessed. CRF was measured using the European Organisation for Research and Treatment of Cancer Quality of Life Fatigue Module (EORTC QLQ-FA12) Questionnaire. Sociodemographic and medical data were collected with self-report questionnaires. Descriptive analyses, cluster analysis, and multiple regression analysis were used to examine CRF in AYAs. Results: In total, n = 577 patients were included. Respondents' fatigue scores were highest for the physical subscale (mean = 45.6; standard deviation [SD] = 28.2), followed by the emotional (mean = 26.7; SD = 28.8) and cognitive dimensions (mean = 19.7; SD = 22.7). Female participants, patients with an additional disease, and patients with financial problems resulting from having cancer reported significantly higher fatigue scores for all three of the subscales (R2 range: 0.10-0.22). Testicular cancer patients had the lowest CRF scores for every dimension. Breast and gynecological cancer patients had the highest emotional and cognitive fatigue scores. Conclusion: Medical variables such as cancer site and therapy scheme seem to have little influence. Caregivers should assess CRF in AYAs independent of their medical characteristics. Reducing additional burdens may represent a way of reducing CRF in AYA cancer patients.

[A group intervention to promote work ability in patients with head and neck cancer]. / Eine Gruppenintervention zur Förderung der Arbeitsfähigkeit für Patienten mit Kopf-Hals-Tumoren.

INTRODUCTION: Despite high distress the majority of head and neck cancer patients does not use any psycho-oncological counselling or psychotherapeutic support. Additionally, patients with head and neck cancer have an increased risk of not returning to work compared to other cancer patients. Therefore, we have developed a group intervention program which aims at improving work ability in patients with head and neck cancer as well as their quality of life, self-efficacy and psychological well-being. MATERIAL AND METHODS: In a randomized controlled trial head and neck cancer patients either receive a group intervention or socio-legal counselling. Male head and neck cancer patients with elevated levels of psychological and work-related distress are included. The group intervention consists of eight sessions. Groups are led by both a psychotherapist and a former head and neck cancer patient (peer). Feasibility and acceptability of the group intervention were tested by means of a pilot group. Each session was evaluated by pilot group participants. Semi-structured interviews were used to assess relevance of content and practicability. RESULTS: 113 patients were personally addressed, of which four patients participated in the pilot group. Patients reported that the intervention fit very well with their daily life and expressed satisfaction with it. Three patients emphasized the importance of the peer. DISCUSSION: The presence of the peer as identification figure seems to be of crucial importance. To increase recruitment numbers inclusion criteria will be modified and participation costs will be reduced.

Recruiting young adult cancer patients: Experiences and sample characteristics from a 12-month longitudinal study.

PURPOSE: Studies among young adult cancer patients are necessary to improve their psychosocial care situation. However, achieving high response rates in this group is challenging. This study focused on the psychosocial life and supportive care situation of young adult cancer patients, and reports the recruitment and retention strategies, sample characteristics and preferences. METHOD: Participants (aged 18-39  years at diagnosis) diagnosed within the preceding 4 years were recruited from various clinical settings and surveyed at two time points. RESULTS: In total, 514 participants completed both surveys. Most patients were recruited from rehabilitation clinics (39.5%) and tumour registries (30.2%). Internet-based self-registration resulted in the highest yield of participants. Participants in inpatient (rehabilitation) treatment preferred to complete a hard copy of the questionnaire at baseline (59.7%), but a strong preference for using the online form was found at follow-up (74.5%). The distribution of diagnoses in the sample was almost comparable to the national incidence rates in Germany. Males and patients with melanoma were slightly under-represented. CONCLUSIONS: Recruitment of a large sample of young adult cancer patients is possible but requires intensive recruitment efforts, particularly in Germany. Social media and age-specific approaches were found to be effective for recruiting and retaining participants. Giving patients the option to complete a hard copy or the online version of the questionnaire, especially during inpatient treatment, may optimise participation rates. Psychosocial research and support programmes for young adults should consider that women are probably more likely to participate in psychosocial (research) programmes than men.

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.