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.

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.

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.

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.

[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.

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.

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.