[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.

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.

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.

The association between sleep problems and general quality of life in cancer patients and in the general population.

Objective: It is well-known that patients with cancer frequently experience sleep problems, and that sleep quality is associated with general quality of life (QoL). The aims of this study were to analyze the relationship between sleep problems and other components of QoL in more detail and to investigate sex and age differences in sleep quality in cancer patients in comparison with the general population. Method: This study comprised one general population sample (n = 4,476) and eight samples with cancer patients (n between 323 and 4,020). Sleep Quality was measured using the QoL questionnaire EORTC QLQ-C30. Results: All of the cancer patient groups reported more sleep problems than the general population. Sleep problems were associated with all facets of QoL both in cancer patients and in the general population. The highest associations were found in cancer patients for fatigue (r = 0.52) and emotional functioning (r = -0.47). The association between sleep quality and general QoL was lower in the cancer samples (r = -0.37) than in the general population (r = -0.46). Female cancer patients reported markedly more sleep problems than male patients did (d = 0.45), while this sex difference was lower in the general population (d = 0.15). In contrast to the general population, younger cancer patients had greater trouble sleeping than older patients did (d = -0.17). Conclusion: The results underline the significance of the role mental factors play in sleep problems. Health care providers should pay special attention to female patients and younger patients concerning this issue.

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.

Frequency of Sexual Problems and Related Psychosocial Characteristics in Cancer Patients-Findings From an Epidemiological Multicenter Study in Germany.

BACKGROUND: Multimodal cancer treatments are often associated with sexual problems. Identifying patients with sexual problems could help further elucidate serious issues with their sexuality and thus promote or maintain patients' sexual health. We aimed to assess the occurrence of sexual problems in patients across different tumor locations and to explore associated sociodemographic, medical and psychosocial factors. METHODS: We included 3,677 cancer patients (mean age 58 years, age range 18-75 years, 51.4% women) from a large epidemiological multicenter study in Germany on average 13.5 months after cancer diagnosis. The occurrence and frequency of sexual problems were assessed via a binary item on the problem checklist of the Distress Thermometer (DT). Controlled associations of these problems with sociodemographic, medical and psychosocial factors including distress (DT), anxiety (GAD-7), depression (PHQ-9), quality of life (EORTC-QLQ-C30), and social support (SSUK-8) are analyzed using logistic regression analysis. RESULTS: We found that 31.8% of patients reported sexual problems, with a significant higher proportion in men (40.5%) compared to women (23.7%), OR 2.35, 95% CI [1.80-3.07] and a higher proportion in patients with a partner (35.6%) compared to those without a partner (3.5%), OR 2.83, 95% CI [2.17-3.70]. Tumor location was associated with occurrence of sexual problems: patients with cancer, affecting the male genital organs had the highest chance for sexual problems, OR 2.65, 95% CI [1.18-3.95]. There was no significant difference in the occurrence of sexual problems between age groups OR 0.99, 95% CI [2.13-3.53] and type of therapy (e.g., operation OR 0.91, 95% CI [0.72-1.15]). Sexual problems were further associated with elevated levels of anxiety, OR 1.05, 95% CI [1.02-1.10], less social support, OR 0.93, 95% CI [0.90-0.97] and lower quality of life in terms of impaired functioning (e.g., social function, OR 0.99, 95% CI [0.99-1.00]). CONCLUSIONS: Sexual problems are commonly reported by patients. Male patients and those living with a partner are more likely to report sexual problems. Sexual problems are associated with different aspects of well-being. The findings imply the practical relevance to screen for sexual problems among patients and identified groups that should be particularly monitored.

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.

Temporal stability of quality of life assessments in cancer patients.

Quality of life (QoL) is an important outcome criterion in cancer research and practice. Multiple studies have been performed to test the short-term temporal stability (1 day-2 weeks) of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire EORTC QLQ-C30, but its stability over longer periods of time is largely unknown. The EORTC QLQ-C30 was administered at two time points between 3 and 12 months apart in six samples of cancer patients with varying characteristics (N between 298 and 923). Averaged across the six samples, the coefficients of temporal stability (intra-class correlation coefficients ICC) were between 0.31 and 0.59 for the single scales. The 2-item global health/QoL scale showed a mean coefficient of 0.44. When the stability coefficients were calculated separately for males and females and for younger vs. older patients, no systematic gender or age differences were found in the temporal stability of the QoL scales, though the stability was slightly higher in males (vs. females) and in older subgroups (vs. younger subgroups). It is nearly impossible to predict the course a cancer patients' QoL will take over a several month period. Repeated measurements are necessary to track QoL developments.

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.

Quality of life and associated factors after surgical treatment of vulvar cancer by vulvar field resection (VFR).

PURPOSE: To investigate patient-reported quality of life (QoL) and associated factors in vulvar cancer patients treated surgically by vulvar field resection (VFR) without adjuvant radiation. METHODS: We retrospectively evaluated patient-reported QoL as part of the prospective monocentric VFR trial using the 30-item European Organization for Research and Treatment of Cancer quality-of-life questionnaire (EORTC QLQ-C30) supplemented by a question assessing sexual activity. All patients had been treated by VFR and no participant had received adjuvant radiotherapy. The gynecologic cancer lymphedema questionnaire (GCLQ) was used to determine the presence of lymphedema. Structured telephone interviews were conducted to assess postoperative sequelae and long-term complications. RESULTS: Forty-three VFR patients (median age 63 years) were available for QoL assessment. Thirty-eight (88%) had received inguinal lymph-node dissection in addition to VFR. Mean global QoL (global health status) rating among all patients was 66.1 (± 25.5) on a scale from 0 to 100 with higher scores indicating better QoL. Higher GCLQ scores were significantly associated with lower global QoL scores (Spearman's rank correlation ρ =- 0.7, p < 0.0001). The presence of preoperative co-morbidities and postoperative wound-healing complications were also linked to reduced QoL (p < 0.01 for both). In a multivariable regression model, there was a significant interaction between preoperative co-morbidities and wound-healing complications with regard to global QoL (p < 0.05). CONCLUSION: Overall, VFR patients exhibit good quality of life postoperatively. The presence of lymphedema, wound-healing complications, and preoperative morbidities were associated with reduced QoL. Prospective longitudinal studies have to confirm our findings in the future.

Fatigue in cancer patients: comparison with the general population and prognostic factors.

PURPOSE: The aims of this examination were to compare cancer patients' fatigue burden with that of the general population, to identify clinical factors that are associated with fatigue, and to test psychometric properties of the fatigue questionnaire MFI-20 including the short-form MFI-10. METHODS: A sample of 1818 German cancer patients was tested with the MFI-20. RESULTS: The study confirmed that the cancer patients demonstrate a high level of burden from fatigue. The effect size for the comparison between the cancer patients and a sample of the general population (n = 1993) was d = 0.58 based on MFI-20 total scores. In the cancer patients' sample, females reported slightly higher levels of fatigue than males did (p < 0.05). There was no significant effect of age on fatigue. Advanced tumor stage, the presence of metastases, and a "poorer" Eastern Cooperative Oncology Group (ECOG) performance status were significantly associated with fatigue. The results of the confirmatory factor analyses (CFAs) only partly confirmed the factorial structure of the MFI-20. CONCLUSION: Despite the insufficient CFA indices, we believe that the scale structure of the MFI-20 should not be changed and that calculating a total fatigue score is justifiable. For those seeking a shorter questionnaire, the MFI-10, which only contains those 10 items which positively indicate fatigue, is a good alternative.

Cancer-specific distress, supportive care needs and satisfaction with psychosocial care in young adult cancer survivors.

PURPOSE: Identification of cancer-specific distress, supportive care needs, and satisfaction with psychosocial care in young adult cancer survivors. METHODS: 117 young adults diagnosed with cancer (AYA), aged between 18 and 39 years old at the time of the survey completed questionnaires to measure cancer-specific distress (QSC-R23) and supportive care needs (SCNS-SF34), as well as their utilization of and satisfaction with psychosocial care after acute medical treatment (0-5 years). Differences between two survivor groups (≤2 years from diagnosis and >2 years from diagnosis) were assessed. RESULTS: Participants reported slight cancer-specific distress (M = 1.22; SD = 0.85) and had the highest scores in the fears domain (M = 1.90; SD = 1.33). AYA survivors ≤2 years from diagnosis (M = 39.82; SD = 26.33) and survivors >2 years from diagnosis (M = 25.68; SD = 27.97) most often reported their psychological supportive care needs as being unmet followed by their health system/information and sexuality support needs. Unmet needs were positively associated with cancer-specific distress (R2 = 0.694). More than half of the AYA cancer survivors in both groups used social legal counselling (N = 67/117, 57.3%) and psychological counselling (N = 65/117, 55.6%) and were mostly highly satisfied with those services. CONCLUSION: It is important to provide psychological supportive care to AYA cancer survivors, a patient group that is very open to taking advantage of such services. This should be taken into account when implementing specific psychosocial follow-up care as early as possible to decrease reported unmet needs. Cancer-related fears seem to remain a salient issue for patients even long after they have completed treatment.

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.

Age and gender differences in anxiety and depression in cancer patients compared with the general population.

OBJECTIVE: The aim of this study was to compare the levels of anxiety and depression in cancer patients with those of the general population, to examine age and gender differences in anxiety and depression, to analyse the impact of several socio-demographic and clinical parameters on anxiety and depression, and to test the age and gender measurement invariance of the Hospital Anxiety and Depression Scale (HADS). METHODS: A sample of 3,785 German patients with cancer and a sample of 2,747 people of the German general population were examined using the HADS. RESULTS: Patients with cancer were more anxious but slightly less depressed than age- and gender-matched individuals of the general population. Young patients with cancer were particularly affected by anxiety. Measurement invariance across gender and age could be established. For all analysed clinical variables, including tumour site, tumour stage, metastases, setting and Eastern Cooperative Oncology Group (ECOG) performance status we found no significant interaction effects with gender that exceeded the 5% significance criterion. CONCLUSION: The HADS provides fair comparisons between age and gender groups. Gender differences in anxiety and depression can be generalised across the cancer sites and clinical subgroups. Young patients with cancer deserve special attention by the healthcare system.

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.