Change in body weight of older adults before and during the COVID-19 pandemic: longitudinal results from the Berlin Aging Study II.

OBJECTIVES: Change in body weight during the COVID-19 pandemic as an unintended side effect of lockdown measures has been predominantly reported for younger and middle-aged adults. However, information on older adults for which weight loss is known to result in adverse outcomes, is scarce. In this study we describe the body weight change in older adults before, during, and after the COVID-19 lockdown measures and explore putative associated factors with a focus on the period that includes the first six months of the COVID-19 containment measures. DESIGN: Prospective cohort study with three follow-up examinations over the course of 10 years. SETTING AND PARTICIPANTS: In this study, we analyzed the longitudinal weight change of 472 participants of the Berlin Aging Study II (mean age of 67.5 years at baseline). MEASUREMENTS: Body weight was assessed at four time points. Additionally, differences between subgroups characterized by socio-economic, cognitive, and psychosocial variables as well as morbidity burden, biological age markers (epigenetic clocks, telomere length), and frailty were compared. RESULTS: On average, women and men lost 0.87% (n = 227) and 0.5% (n = 245) of their body weight per year in the study period covering the first six months of the COVID-19 pandemic. Weight loss among men was particularly pronounced among groups characterized by change in physical activity due to COVID-19 lockdown, low positive affect, premature epigenetic age (7-CpG clock), diagnosed metabolic syndrome, and a more masculine gender score (all variables: p < 0.05, n = 245). CONCLUSION: During the COVID-19 pandemic, older participants lost weight with a 2.5-times (women) and 2-times (men) higher rate than what is expected in this age.

Talking about Familial Breast and Ovarian Cancer Risk-Evaluation of a Psychosocial Training Module for Gynecologists in Germany.

Primary care gynecologists are increasingly integrated into the care of patients with hereditary breast and ovarian cancer (HBOC) risks. These physicians should not only have basic genetic knowledge; they should also feel able to sensitively address an increased HBOC risk and deal with emotional, stressful situations in this context. Our project aimed at developing a training module, 'iKNOWgynetics', addressing psychosocial challenges in the context of HBOC care for primary care gynecologists. We developed the psychosocial training module in three phases: first, we conducted an online survey with n = 35 women with a family history of breast or ovarian cancer to assess patients' experiences and needs. Second, based on the results of the needs assessment, we developed the training module. Third, we evaluated the training by assessing physicians' (n = 109) self-efficacy with regard to communication skills in the context of HBOC before and after the training. In the needs assessment, seven psychosocial themes emerged. These themes, complementing a review of the literature, informed the training curriculum. The training was divided into two parts: (1) communicating with women before genetic testing and (2) care co-management for women with HBOC after genetic testing. After the training, participants reported a significant increase in self-efficacy in three domains: communicating empathetically, educating patients in a comprehensible way and dealing with emotionally challenging situations. Our results highlight the relevance of psychosocial issues for patients with HBOC. A genetic literacy training module that integrates aspects of psychosocial care increases physicians' confidence in dealing with emotionally challenging situations before and after their patients' genetic testing. Thus, such trainings may improve the care of women with hereditary cancer risks.

iKNOWgynetics - A web-based learning concept to empower primary care gynecologists to participate in the care of patients with a family history of breast and ovarian cancer.

Familial cancer burden and genetics play an increasingly important role in the early detection and prevention of gynecological cancers. However, people with hereditary cancer risks are often identified late when they already have cancer. We aimed at developing and evaluating a training concept for primary care gynecologists-iKNOWgynetics-to improve their knowledge and awareness of genetic cancer syndromes and their ability to identify patients with increased familial cancer risks based on up-to-date evidence and current guidelines (in Germany, primary care includes all doctors treating patients on an outpatient basis without a clear separation of the expertise of the doctor or of their specialty). Starting off with a needs assessment among primary care gynecologists, we developed and evaluated an online training concept-using a web-based learning platform in combination with a live virtual seminar-to convey practice-relevant knowledge about familial cancer. After registration, participants get access to the web-based learning platform (www.iknowgynetics.de) to prepare for the virtual seminars and to use it as online reference to re-access the contents after the training. Evaluation included multiple-choice (MC) questions on knowledge and participants' self-efficacy to implement the acquired knowledge, which were administered in a pre-post design. Of 109 participants, 103 (94.5%) filled out pre- and post-questionnaires. Eighty-five participants were gynecologists in primary care from Berlin (81.2%) and Brandenburg (18.8%) and had an average of 24.1 years (SD = 8.5 years) of professional experience. After the training, participants answered significantly more knowledge questions correctly (M = 15.2 of 17, SD = 1.3) than before (M = 13.8 of 17, SD = 1.7) (p < 0.01) and felt more confident to be able to apply referral criteria for specialized counseling in practice (p < 0.001). The online-based training iKNOWgynetics considers the busy schedule of primary care gynecologists and supports them in acquiring practice-relevant information on familial cancer risks and on how to identify healthy persons at risk, which may ultimately help to improve the prevention of gynecological cancers. In future studies, the reported concept could be transferred to other entities.

Paradigmatic Approach to Support Personalized Counseling With Digital Health (iKNOW).

iKNOW is the first evidence-based digital tool to support personalized counseling for women in Germany with a hereditary cancer risk. The counseling tool is designed for carriers of pathogenic gBRCA (germline breast cancer gene) variants that increase the lifetime risk of breast and ovarian cancer. Carriers of pathogenic variants are confronted with complex, individualized risk information, and physicians must be able to convey this information in a comprehensible way to enable preference-sensitive health decisions. In this paper, we elaborate on the clinical, regulatory, and practical premises of personalized counseling in Germany. By operationalizing these premises, we formulate 5 design principles that, we suggest, are specific enough to develop a digital tool (eg, iKNOW), yet wide-ranging enough to inform the development of counseling tools for personalized medicine more generally: (1) digital counseling tools should implement the current standard of care (eg, based on guidelines); (2) digital counseling tools should help to both standardize and personalize the counseling process (eg, by enabling the preference-sensitive selection of counseling contents from a common information base); (3) digital counseling tools should make complex information easy to access both cognitively (eg, by using evidenced-based risk communication formats) and technically (eg, by means of responsive design for various devices); (4) digital counseling tools should respect the counselee's data privacy rights (eg, through strict pseudonymization and opt-in consent); and (5) digital counseling tools should be systematically and iteratively evaluated with the users in mind (eg, using formative prototype testing to ensure a user-centric design and a summative multicenter, randomized controlled trial). On the basis of these paradigmatic design principles, we hope that iKNOW can serve as a blueprint for the development of more digital innovations to support personalized counseling approaches in cancer medicine.

Boosting for insight and/or boosting for agency? How to maximize accurate test interpretation with natural frequencies.

BACKGROUND: Many physicians do not know how to accurately interpret test results using Bayes' rule. As a remedy, two kinds of interventions have been shown effective: boosting insight and boosting agency with natural frequencies. To boost insight, test statistics are provided in natural frequencies (rather than conditional probabilities), without instructions on how to use them. To boost agency, a training is provided on how to translate probabilities into natural frequencies and apply them in Bayes' rule. What has not been shown is whether boosting agency is sufficient or if representing test statistics in natural frequencies may additionally boost insight to maximize accurate test interpretation. METHODS: We used a pre/posttest design to assess test interpretation accuracy of 577 medical students before and after a training on two Bayesian reasoning tasks, one providing conditional probabilities, the other natural frequencies. The pretest assessed baseline abilities versus the effect of natural frequencies to boost insight. After participants received a training on how to translate conditional probabilities into natural frequencies and how to apply them in Bayes' rule, test interpretation skills were assessed using the same tasks again, comparing the effects of training-induced agency with versus without additionally boosting insight (i.e., test statistics in natural frequencies versus conditional probabilities). RESULTS: Compared to the test question formatted in conditional probabilities (34% correct answers), natural frequencies facilitated Bayesian reasoning without training (68%), that is, they increased insight. The training on how to use natural frequencies improved performance for tasks formatted in conditional probabilities (64%). Performance was maximal after training and with test statistics formatted in natural frequencies, that is, with a combination of boosting insight and agency (89%). CONCLUSIONS: Natural frequencies should be used to boost insight and agency to maximize effective use of teaching resources. Thus, mandating that test statistics are provided in natural frequencies and adopting short trainings on how to translate conditional probabilities into natural frequencies and how to apply them in Bayes' rule will help to maximize accurate test interpretation. TRIAL REGISTRATION: The study was a registered with the German Clinical Trial Registry ( DRKS00008723 ; 06/03/2015).

What Causes Cancer in Women with a gBRCA Pathogenic Variant? Counselees' Causal Attributions and Associations with Perceived Control.

Laypersons have a strong need to explain critical life events, such as the development of an illness. Expert explanations do not always match the beliefs of patients. We therefore assessed causal attributions made by women with a pathogenic germline variant in BRCA1/2 (gBRCA1/2-PV), both with and without a cancer diagnosis. We assumed that attributions would be associated with the control experience. We conducted a cross-sectional study of N = 101 women with a gBRCA1/2-PV (mean age 43.3 ± 10.9). Women answered self-report questionnaires on perceived causes and control. Most women (97%) named genes as a causal factor for the development of cancer. Surprisingly, the majority of women also named stress and health behavior (both 81%), environment (80%), and personality (61%). Women with a cancer diagnosis tended to endorse more causes. The attributions to personality (ρ = 0.39, p < 0.01) health behavior (ρ = 0.44, p < 0.01), and environment (ρ = 0.22, p < 0.05) were significantly associated with personal control, whereas attribution to genes showed a small, albeit significant association with treatment control (ρ = 0.20, p < 0.05). Discussing causal beliefs in clinical counseling may provide a "window of opportunity" in which risk factors and health behaviors could be better addressed and individually targeted.

Differentiating Sex and Gender Among Older Men and Women.

OBJECTIVE: This study aimed to paradigmatically show the development of a gender score that can be used as either an adjustment or a matching variable to separate the effects of gender versus biological sex in a sample of older adults. METHODS: Our sample comprised 1100 participants from the Berlin Aging Study II (52% women, mean [standard deviation] age = 75.6 [3.8] years). The gender score included a multitude of gender-related variables and was constructed via logistic regression. In models of health outcomes, it was used as an adjustment variable in regression analyses as well as a matching variable to match older men and women according to their gender. RESULTS: Matching by gender substantially reduced sample size to n = 340. Analyses (either adjusting for gender or matching men and women according to gender) revealed that female sex was independently associated with lower grip strength (B = -14.47, 95% confidence interval [CI] = -15.51 to -13.44), better cognitive performance (B = 3.47, 95% CI = 1.94 to 5.0), higher pulse wave velocity (B = 0.19, 95% CI = 0.06 to 0.31), lower body mass index (B = -0.97, 95% CI = -1.74 to -0.21), and lower rates of metabolic syndrome (odds ratio = 0.53, 95% CI = 0.37 to 0.77). In addition, both sex and gender were independently associated with cognitive performance and depression. CONCLUSIONS: Calculating a gender score allows for the inclusion of a large number of variables, creating parsimonious models that are adaptable to different data sets and alternative gender definitions. Depending on the research question and the sample properties, the gender score can be used as either an adjustment or a matching variable.Trial Registration: DRKS-Deutsches Register Klinischer Studien (Study ID: DRKS00016157).

Illness representations, coping and anxiety among men with localized prostate cancer over an 18-months period: A parallel vs. level-contrast mediation approach.

OBJECTIVE: Men diagnosed with localized prostate cancer (lPCa) are confronted with the decision for a treatment strategy, potentially experiencing treatment side effects and psychological distress. The Common Sense Model proposes that coping with such challenges is related to illness representations: Beliefs regarding consequences, coherence, timeline, and controllability of the illness. We analyzed the interplay of illness representations, coping and anxiety over an 18-month period among men with lPCa undergoing different treatment options (Active Surveillance, curative treatment). METHODS: In this longitudinal study, 183 men (age M = 66.83) answered a questionnaire before starting treatment, and 6, 12, and 18 months later. We analyzed time trajectories with growth curve modeling and conducted mediation analyses to evaluate the influence of coping on the association of illness representations and anxiety. Using a novel methodological approach, we compared a classic parallel mediation model with a level-contrast approach for the correlated mediators problem- and emotion-focused coping. RESULTS: Independent of treatment (b = 1.31, p = 0.200) men reported an elevated level of anxiety after diagnosis which declined considerably within the following 6 months (b = -1.87, p = 0.009). The perceived seriousness of consequences was significantly associated with greater anxiety, at baseline (ß = 0.471) and over time (all ß ≥ 0.204). This association was mediated by coping: Using more emotion-than problem-focused coping was associated with higher anxiety. CONCLUSIONS: Receiving a lPCa diagnosis is associated with a phase of increased anxiety. In order to reduce anxiety, information provision should be accompanied by developing concrete action plans to enable problem-focused coping strategies.

Appreciation and job control predict depressive symptoms: results from the Study on Mental Health at Work.

OBJECTIVE: Depressive symptoms are a leading cause of disability retirement and sick leave. The aim of this study was to assess the risk of depressive symptoms in German employees and its associations with factors from both the occupational and the non-occupational domain and gender. METHODS: In the second wave of the German Study of Mental Health at Work (SMGA), a representative sample of 2640 German employees (52% women) was studied. Depressive symptoms were assessed with the PHQ-9 questionnaire. Psychosocial occupational and non-occupational conditions were assessed with quantitative interviews. In this cross-sectional sample, the association of these factors with depressive symptoms was examined using logistic regression models. RESULTS: Factors from both the occupational and the non-occupational domain were associated with risk of depressive symptoms. Low appreciation from superior (ORmen 2.1 (95% CI 1.2-3.7); ORwomen 3.2 (95% CI 2.1-4.8)), low job control (ORmen 2.9 (95% CI 1.6-5.4); ORwomen 1.6 (95% CI 1.0-2.5)), and critical life events (ORmen 3.0 (95% CI 1.6-5.4); ORwomen 2.3 (95% CI 1.5-3.7)) had the strongest association with risk of depressive symptoms. The association with quantitative demands was stronger in caregivers than in non-caregivers. The results indicated possible differences in the associations of working conditions between men and women, and between family caregivers and non-caregivers. CONCLUSION: Factors from both work and private life are associated with depressive symptoms, especially appreciation, job control, and critical life events. Gender differences, with respect to appreciation and influence at work, suggest a more gender sensitive approach to psychosocial occupational health research and interventions.

Making Sense of a Health Threat: Illness Representations, Coping, and Psychological Distress among BRCA1/2 Mutation Carriers.

Little is known about how women with a BRCA1/2 mutation develop an individual understanding of their breast and ovarian cancer risk and how this affects their psychological distress. In this study, we investigated associations between illness representations, coping strategies and psychological distress. N = 101 BRCA1/2 mutation carriers answered self-report questionnaires on illness representations, coping strategies, cancer worry and depressive symptoms. Women without cancer were compared to women with a previous cancer diagnosis. Illness representations explained 50% and 45% of the variability in cancer worry and depressive symptoms, respectively. Woman perceiving severe consequences (ß = 0.29, p < 0.01) and having more concerns (ß = 0.37, p < 0.01) were found to report more cancer worry. Perceiving information about the mutation as less coherent (ß = -0.17, p < 0.05) and experiencing negative emotional responses (ß = 0.60, p < 0.01) were both associated with more depressive symptoms. Women with a previous cancer diagnosis show patterns of illness representations that are potentially more distressing than women without a cancer diagnosis. Findings suggest that physicians involved in counseling should pay attention to illness representations of distressed women. Thereby, it would be possible to detect maladaptive thoughts associated with the mutation, address negative emotions and encourage adaptive coping strategies.

Time pressure predicts decisional regret in men with localized prostate cancer: data from a longitudinal multicenter study.

PURPOSE: A substantial proportion of men with localized prostate cancer (lPCa) later regret their treatment decision. We aimed to identify factors contributing to decisional regret. METHODS: We conducted a longitudinal study, in which men with lPCa were surveyed at four measurement points: T0 (baseline) = prior to treatment; T1 = 6; T2 = 12; T3 = 18 months after baseline. χ2-tests and independent t-tests were used to compare men undergoing different treatments [Active Surveillance (AS) vs. local treatment]. Logistic regression models were fitted to investigate the associations between predictors (time pressure, information provided by the urologist, impairment of erectile functioning, satisfaction with sexual life) and the criterion decisional regret. RESULTS: At baseline, the sample included N = 176 men (AS: n = 100; local treatment: n = 76). At T2 and T3, men after local therapies reported higher regret than men under AS. Decisional regret at T3 was predicted by time pressure at baseline (OR 2.28; CI 1.04-4.99; p < 0.05), erectile dysfunction at T2 and T3 (OR 3.40; CI 1.56-7.42; p < 0.01), and satisfaction with sexual life at T1-T3 (OR 0.44; CI 0.20-0.96; p < 0.05). CONCLUSIONS: Time pressure, erectile dysfunction, and satisfaction with sexual life predict decisional regret in men with lPCa. Mitigating time pressure and realistic expectations concerning treatment side effects may help to prevent decisional regret in PCa survivors. TRIAL REGISTRATION NUMBER: DRKS00009510; date of registration: 2015/10/28.

Gender score development in the Berlin Aging Study II: a retrospective approach.

In addition to biological sex, gender, defined as the sociocultural dimension of being a woman or a man, plays a central role in health. However, there are so far few approaches to quantify gender in a retrospective manner in existing study datasets. We therefore aimed to develop a methodology that can be retrospectively applied to assess gender in existing cohorts. We used baseline data from the Berlin Aging Study II (BASE-II), obtained in 2009-2014 from 1869 participants aged 60 years and older. We identified 13 gender-related variables and used them to construct a gender score by using primary component and logistic regression analyses. Of these, nine variables contributed to a gender score: chronic stress, marital status, risk-taking behaviour, personality attributes: agreeableness, neuroticism, extraversion, loneliness, conscientiousness, and level of education. Females and males differed significantly in the distribution of the gender score, but a significant overlap was also found. Thus, we were able to develop a gender score in a retrospective manner from already collected data that characterized participants in addition to biological sex. This approach will allow researchers to introduce the notion of gender retrospectively into a large number of studies.

Training courses on hereditary breast and ovarian cancer to strengthen cross-sectoral care in underserved areas.

OBJECTIVE: To strengthen cross-sectoral care by disseminating specialized knowledge about hereditary breast and ovarian cancer across underserved areas. METHODS: We report on a training course about genetic counseling and testing of hereditary breast and ovarian cancer patients for gynecologists from certified cancer centers. In total, 50 gynecologists attended the course which was offered once annually between 2017 and 2019. Before and after the course, participants were asked to answer a self-assessment questionnaire and completed the training with a multiple-choice test. The results of the self-assessments and knowledge tests were analyzed to steadily improve the training. RESULTS: The self-assessments imply a perceived increase in certainty regarding the inclusion criteria for specialized genetic counseling, pedigree analysis, and contents of the initial consultation. Both the knowledge tests and self-assessments showed that participants had difficulties in interpreting and differentiating between age-specific and lifetime risks. CONCLUSION: The courses successfully conveyed knowledge necessary to identify patients at risk and to provide timely genetic analyses even in rural areas. PRACTICE IMPLICATIONS: The results are a promising basis for creating additional training courses addressing specialists in hospitals and gynecological practices. Further education of physicians might improve cross-sectoral cooperation and thereby enable specialized care supply in rural areas.

If only I could turn back time-Regret in bereaved parents.

INTRODUCTION: Regret about loss is one of the most intense types of regret experienced in life. Little is known about the bereavement regret of parents whose child has died of cancer. Although knowledge about parents' experiences after their child's death is vital for supporting these families, parents' regret is mostly hidden from the treating clinical staff. This study aimed to explore these parents' regret themes and their impact on their future lives. METHODS: An explorative questionnaire was sent to bereaved parents who lost a child to cancer. A total of 26 parents responded to the questionnaire. Data were analyzed using the constant comparative method. RESULTS: Regret experiences were shared by almost all participants. The focus of regret issues include parenting and interaction with the child, reflection on existing values, dealing with the disease, and neglecting the remaining siblings. The regret experience had an impact on prioritizing values, future lifestyle and contacts. CONCLUSIONS: Regret seems to be a general phenomenon among bereaved parents and strongly influences the grieving process, in the sense of reflecting on past experiences to reorient for future actions. As this study was explorative, it is significant toward deepening the understanding of bereavement regret in future. These insights are crucial when working with affected families to help them decide important issues they can care about now and will not regret later.

Accuracy in risk understanding among BRCA1/2-mutation carriers.

OBJECTIVE: BRCA1/2-mutation carriers are at high risk of developing cancer. Since they must weigh clinical recommendations and decide on risk-reducing measures, the correct understanding of their 10-year cancer risks is essential. This study focused on the accuracy of women's subjective estimates of developing breast and ovarian cancer within ten years as prerequisite to reduce unnecessary prevention. METHODS: 59 and 52 BRCA1/2-mutation carriers provided their individual risks of developing breast or ovarian cancer in the next 10 years, along with self-reported sociodemographic and psychosocial variables. Women's risk estimates were compared with their objective cancer risks that had been communicated before. RESULTS: 22.6% of counselees under- and 53.2% of the counselees overestimated their 10-year risk of developing breast cancer. As for ovarian cancer, 5.6% under- whereas 51.9% overestimated their risk. Neither demographic factors such as education, parenthood and age, nor a prior diagnosis of breast cancer or prophylactic surgery accounted for these variations in risk accuracy. CONCLUSION: Currently, risk communication during genetic counseling does not guarantee accurate risk estimation in BRCA-mutation carriers. PRACTICE IMPLICATIONS: Counselors must be prepared to prevent overestimation. Counselees' risk estimates need to be assessed and corrected to enable informed decision-making and reduce risks of unnecessary preventive efforts.

[Facets of doctor-patient conversations in urological practice: recommendations for intervention from psycho-oncology]. / Facetten des Arzt-Patienten-Gesprächs in der Urologischen Praxis ­ Handlungsempfehlungen aus der Psychoonkologie.

Tumour diseases are accompanied by complex fears and psychological stress, with which the urologist is confronted. This article examines facets of doctor-patient interaction from a psycho-oncological perspective. These include risk perception, lay theories, lifestyle changes, sexuality and, most importantly, dealing with anxiety. Based on recent research results, suggestions are given for the communication with patients. However, the article also shows the limits of physician-patient conversations. Professional psychological patient support is required if the cancer causes a psychological crisis or if deeper problems are reactivated, or if some problems simply require more time and rest than is available in everyday practice. Therefore, this article provides an overview of further psycho-oncological interventions and support services for cancer patients.

The importance of sexuality, changes in erectile functioning and its association with self-esteem in men with localized prostate cancer: data from an observational study.

BACKGROUND: Treatment for localized prostate cancer (PCa) can cause long-term changes in erectile functioning. However, data on the importance of sexuality and possible consequences of altered erectile functioning on self-esteem in men with localized PCa are lacking. METHODS: Self-report questionnaires were completed by 292 men with PCa, initially managed with active surveillance (AS) or radical prostatectomy (RP). Independent t-tests were conducted to evaluate group differences. A sequential multiple regression model was fitted to analyze the associations between the importance of sexuality, changes in erectile functioning and impairment of self-esteem. Interaction effects were tested using simple slope analyses. RESULTS: Participants were 70 ± 7.2 years old and 66.5% rated sex as being "rather/very important". The two groups differed markedly in changes in erectile functioning, importance of sexuality and impairment of self-esteem (p < .001), with higher values in RP patients. Regression analysis showed that after adjustment for control variables and importance of sexuality, changes in erectile functioning were still associated with impairment of self-esteem (B = .668, SE = .069, p < .001). The interaction of changes in erectile functioning and importance of sexuality reached significance (B = .318, SE = .062, p < .001). CONCLUSIONS: RP patients report more changes in erectile functioning than AS patients. Moreover, in men with localized PCa, erectile functioning and self-esteem are closely related. Sexuality seems to be important for the majority of these men. Physicians should address the possibility of erectile dysfunction and its potential effects on psychological well-being before the treatment decision.

Early palliative care for those who care: A qualitative exploration of cancer caregivers' information needs during hospital stays.

BACKGROUND: The supporting role of caregivers is crucial to cancer patients' care and well-being. Periods of inpatient hospital treatment are common in the cancer trajectory. There is insufficient systematic knowledge of caregivers' experiences and information needs in hospital context. AIM: Aim of this study is to identify information needs and factors contributing to unmet information needs of caregivers in hospital. DESIGN: A qualitative approach was used to identify major themes and specific types of information needs. Interviews with caregivers were conducted and analysed using a qualitative three-step process. SETTING/PARTICIPANTS: The study was conducted in a hospital oncology department. Seventeen caregivers of patients with advanced cancer were interviewed. RESULTS: Caregivers' needs during inpatient treatment vary and are largely unmet. Four major themes emerged from the analysis, revealing information needs of caregivers related to the cancer disease, patient, caregivers themselves and hospital context. The most mentioned issues were appropriate treatment, treatment outcomes and the related consequences for caregivers' life, hospital processes and transition back home. CONCLUSION: Caregivers have a variety of specific information needs which often remain unmet. Based on our findings, we provide recommendations for integrating caregivers into oncology care, which should be implemented in clinical practice, policy decisions and research.