Existential distress among family caregivers of patients with advanced cancer: A systematic review and meta-analysis.

OBJECTIVE: Caregiving for a loved one is challenging and requires significant resources. Existential distress in family caregivers may include hopelessness, demoralization, fear of death, pre-loss grief, or a sense of not being emotionally prepared. The aim of this systematic review is to synthesize the quantitative literature on existential distress among family caregivers of patients with advanced cancer, focusing on its prevalence, association with mental disorders, as well as with sociodemographic, disease, and treatment-related factors. METHODS: We systematically searched electronic databases for quantitative studies of the above-described existential distress concepts in family caregivers of patients with advanced cancer. Two independent reviewers extracted data and evaluated study quality. Data were analyzed using random-effects meta-analysis. RESULTS: We retrieved 17.587 records, of which 31 studies fulfilled inclusion criteria. 63% of the studies (n = 20) provided sufficient data for meta-analysis for 5558 patients. We found an overall pooled prevalence of 30.6% for existential distress, 95% CI [24.2-37.0]. For existential distress subconcepts, prevalence rates were 57.0%, 95% CI [37.8-76.2], for death anxiety, 13.9%, 95% CI [10.8-17.0], for demoralization, 24.0%, 95% CI [18.0-30.0], for pre-loss grief, 18.4%, 95% CI [4.0-32.7], for hopelessness, 35.2%, 95% CI [28.2-42.2], for loneliness, and 35.6%, 95% CI [13.0-58.3], for emotional unpreparedness. CONCLUSIONS: Approximately one third of the respondents were affected by high levels of existential distress. The review provides evidence for further development of support services that can reduce existential distress, focused on death anxiety, and improve the quality of life for family caregivers of patients with advanced cancer.

"Being an informal caregiver - strengthening resources": mixed methods evaluation of a psychoeducational intervention supporting informal caregivers in palliative care.

BACKGROUND: Informal caregivers are key support for patients with progressive incurable diseases. However, their own needs often remain unmet. Therefore, we developed, manualised and implemented the intervention "Being an informal caregiver - strengthening resources" aiming to support and empower informal caregivers by addressing relevant information-related, physical, psychological and social needs. METHODS: In this pilot study, we evaluated the acceptance and experiences with this psychoeducational intervention. The study was conducted over two years (2019-2021). Informal caregivers were recruited from the University Medical Centre Hamburg-Eppendorf and the metropolitan region of Hamburg, Germany. The intervention was aimed at adult persons who identified themselves as an informal caregiver to an adult patient with a progressive incurable cancer and non-cancer disease. For the evaluation we used a mixed methods approach, combining a longitudinal questionnaire survey (pre-intervention, after each module, 3-months follow-up) and semi-structured interviews post-intervention. Quantitative data were analysed using descriptive statistics and a paired t-Test, interviews were analysed based on the qualitative content analysis according to Mayring. Results were triangulated using a convergent triangulation design. RESULTS: Of 31 informal caregivers who received the intervention, 25 returned the follow-up questionnaire and 20 informal caregivers were interviewed. Triangulated results showed a high satisfaction with the implementation of the intervention. Of a broad range of subjective benefits, gaining knowledge, self-awareness and self-efficacy were most apparent. Informal caregivers reported improved preparedness, awareness of own needs as well as confidence regarding handling own emotions and interacting with the ill person. However, implementing the learned skills into daily life can be challenging due to internal and external factors. Motivations and challenges for participating as well as potential for improvement were identified. CONCLUSIONS: This pilot study showed an overall positive evaluation and several subjective benefits of the psychoeducational intervention "Being an informal caregiver - strengthening resources". Further research is needed to measure the efficacy of this intervention on informal caregivers' outcomes. Therefore, a multicentre randomized prospective study is planned.

Specialist palliative care until the very end of life - reports of family caregivers and the multiprofessional team.

BACKGROUND: Specialist palliative care (SPC) includes care for incurably ill patients and their family caregivers at home or on a palliative care ward until the very end of life. However, in the last days of life, patients can rarely express their needs and little is known about SPC outcomes as reported by multiprofessional SPC teams and family caregivers. METHODS: Using the Palliative Care Outcome Scale (POS; Score 0-40), proxy assessments of SPC outcomes in the patient's last 3 days of life were performed by SPC teams and primary family caregivers of three home care and three inpatient services. Additional questions were asked about problems solved 'particularly well' or 'inadequately' (last 7 days), which were content analyzed and quantified. RESULTS: Proxy assessments by SPC teams were available in 142 patients (of whom 51% had died at home). Family caregiver assessments exist for a subgroup of 60 of these patients. SPC teams (POS total score: mean 13.8, SD 6.3) reported SPC outcomes slightly better than family caregivers (mean 16.7, SD 6.8). The POS items consistently rated as least affected (= 0) by both, SPC teams and family caregivers, were 'not wasted time' (team 99%/family caregivers 87%), 'information' (84%/47%) and 'support' (53%/31%). Items rated as most affected (= 4) were 'patient anxiety' (31%/51%), 'life not worthwhile' (26%/35%) and 'no self-worth' (19%/30%). Both groups indicated more problems solved 'particularly well' than 'inadequately'; the latter concerned mainly clinically well-known challenges during end-of-life care and family caregiver care. CONCLUSIONS: This study shows the range and type of symptoms and other concerns reported in the patient's last days. Starting points for further improvements in family caregiver care and psychosocial and spiritual issues were identified.

Evaluation of a Routine Psychosocial Screening for Patients Receiving Inpatient Specialist Palliative Care: Feasibility and Outcomes.

This prospective one-year cohort study aimed to assess the feasibility and outcomes of a routine psychosocial screening at patients' admittance to specialist inpatient palliative care. Patients admitted to an academic palliative care ward were routinely screened for self-reported distress and psychological morbidity, psychosocial stress factors, and subjective need for help from psychosocial professions. Cognitive impairments were the most common patient barrier to screening. Screenings were completed in 138 of 428 patients (32%). Based on established cutoffs, distress was indicated in 89%, depression in 51%, and anxiety in 50% of these patients. The burden on next-of-kin emerged as the most prevalent stress factor (73%). One-half of the patients disclosed a subjective need for help (53%). Possible depression (p = .023), anxiety (p < .001), and subjective need for help (p < .001) correlated positively with a higher amount of time spent by psychologists and creative arts-based therapists with small to moderate effects. Patients who completed the screening were attributed with a higher amount of time by social workers than patients who did not (p = .004), but there were no relationships between screening results and social work. Results suggest the potential of screenings for the allocation of specialist psychosocial care during specialist palliative care; however, barriers to screening do exist.

Long-term outcomes among localized prostate cancer survivors: prospective predictors for return-to-work three years after cancer rehabilitation.

PURPOSE: This study aimed at (1) investigating the work status of men treated by radical prostatectomy due to diagnosis of localized prostate cancer (LPCa) three years after having attended a cancer rehabilitation program and (2) identifying prospective risk factors for not working at this time point. METHODS: In a longitudinal, questionnaire-based multicenter study, 519 working-age LPCa survivors reported on their work status 12 and 36 months following rehabilitation. Chi-square tests/t tests and multivariable logistic regression analysis were used to identify prospective factors associated with not working at 36 months follow-up. RESULTS: Nearly three quarter of LPCa survivors (N = 377, 73%) worked 3 years after post-acute rehabilitation. Most participants (N = 365, 71%) showed continuous return-to-work (RTW) patterns as they worked both 1 and 3 years following rehabilitation. Multivariable regression analysis revealed older age, low or middle socio-economic status as well as resigned and unambitious work behavior and fatigue at the time of attending the rehabilitation program to be prospective factors for not working at 36 months follow-up. Low socio-economic status [Odds ratio (OR) 4.81, 95% confidence interval (CI) 2.07-11.16] and unambitious work behavior [OR 4.48, 95% CI 2.16-9.31] were the strongest predictors. CONCLUSION: Long-term work retention is a realistic goal among LPCa survivors. The results contribute to the identification of at-risk LPCa survivors early in the RTW process. Special attention should be paid to social inequality. Further, interventions related to the management of fatigue and work-related coping styles could improve long-term RTW, as these were relevant, but potentially modifiable factors impeding work retention.

Looking back: Identifying supportive care and unmet needs of parents of children receiving specialist paediatric palliative care from the bereavement perspective.

BACKGROUND: This study examined care needs and utilisation of psychosocial support services among parents of children who had received specialist paediatric palliative care, as well as the relationship between need fulfilment and grief. Possible differences between parents of children who died of cancer versus a non-cancer disease were explored. METHODS: This exploratory study, conducted in two specialist paediatric palliative care facilities, included parents who had lost a child within a period of 0.5 to 8 years before this investigation. From the bereavement perspective, parents reported their needs during paediatric palliative care using the Family Inventory of Needs - Peadiatric II (FIN-PED II). Utilisation of psychosocial support services during paediatric palliative care and after the child's death, as well as potential barriers to accessing services were assessed. Grief symptoms were measured using the Inventory of Complicated Grief - German Version (ICG-D). RESULTS: Overall, 56 of 157 approached parents participated in the study. Mean time interval after the child's death was 3.2 years. Of the 17 FIN-PED II needs, 13 needs were reported to be very/extremely important to more than 75% of the parents each. Highest ranked needs related to asking questions at any time (100%), sincere care for the child (100%), and information about changes in the child's condition (98%). The highest ranked unmet needs related to hope (61%), interactions with siblings (41-42%), and trust in the health care system (39%). Comparisons showed no significant differences between parents whose child died of cancer (n = 18) versus a non-cancer disease (n = 38). During paediatric palliative care, 61% of the parents had accessed at least one psychosocial support service and 84% had done so after the child's death. The most prominent barriers for accessing services were sufficient informal support (38%), no subjective need (23%), and lack of time (20%). Overall, 52% of the parents showed noticeable symptoms for complicated grief (ICG-D > 25). A higher level of grief symptoms significantly correlated with a lower fulfilment of the need to say goodbye to the child (p = .042) with a medium correlational effect. CONCLUSIONS: Our findings may help to guide health care professionals in their assessment of parental needs and provision of support to parents during paediatric palliative care.

Dying in hospital in Germany - optimising care in the dying phase: study protocol for a multi-centre bottom-up intervention on ward level.

BACKGROUND: Hospitals are globally an important place of care for dying people and the most frequent place of death in Germany (47%), but at the same time, the least preferred one - for both patients and their relatives. Important indicators and outcome variables indexing quality of care in the dying phase are available, and various proposals to achieve corresponding quality objectives exist. However, they are not yet sufficiently adapted to the heterogeneous needs of individual hospital wards. METHODS: This multi-centre single-arm pre-post study aims at the development and implementation of context-specific measures in everyday clinical practice, followed by evaluating this approach. Therefore, (1) already existing measures regarding optimal care in the dying phase are identified applying a systematic literature review as well as an online survey and a symposium with experts. Supported by the thereby generated collection of measures, (2) a stratified sample of ten teams of different wards from two university hospitals select suitable measures and implement them in their everyday clinical practice. Circumstances of patients' deaths on the selected wards are recorded twice, at baseline before application of the self-chosen measures and afterwards in a follow-up survey. Retrospective file analysis of deceased persons, quantitative staff surveys as well as qualitative multi-professional focus groups and interviews with relatives form the data basis of the pre-post evaluation. (3) Results are reviewed regarding their transferability to other hospitals and disseminated (inter-)nationally. DISCUSSION: Measures that are easy to implement and appropriate to the specific situation are supposed to significantly improve the quality of care during the dying phase in hospitals and contribute to the well-being of dying patients and their relatives. Successful implementation of those measures requires consideration of the individual conditions and needs of patients and their relatives-but also of the health professionals-on the different hospital wards. Therefore, a bottom-up approach, in which the ward-specific situation is first analysed in detail and then the staff itself selects and implements measures to improve care, appears most promising for optimising care in the dying phase in hospitals. TRIAL REGISTRATION: The study is registered in the German Clinical Trials Register ( DRKS00025405 ).

What are the personal last wishes of people with a life-limiting illness? Findings from a longitudinal observational study in specialist palliative care.

BACKGROUND: Personal last wishes of people facing a life-limiting illness may change closer to death and may vary across different forms of specialist palliative care (SPC). AIMS: To explore the presence and common themes of last wishes over time and according to the SPC settings (inpatient vs. home-based SPC), and to identify factors associated to having a last wish. METHODS: Patients enrolled in a longitudinal study completed questionnaires at the onset (baseline, t0) and within the first 6 weeks (follow-up, t1) of SPC including an open-ended question on their personal last wishes. Last wishes were content analyzed, and all  wishes were coded for presence or absence of each of the identified themes. Changes of last wishes (t0-t1) were analyzed by a McNemar test. The chi-square-test was used to compare the two SPC settings. Predictors for the presence of a last wish were identified by logistic regression analysis. RESULTS: Three hundred sixty-one patients (mean age, 69.5 years; 49% female) answered at t0, and 130 at t1. In cross-sectional analyses, the presence of last wishes was higher at t0 (67%) than at t1 (59%). Comparisons revealed a higher presence of last wishes among inpatients than those in home-based SPC at t0 (78% vs. 62%; p = .002), but not at t1. Inpatient SPC (OR = 1.987, p = .011) and greater physical symptom burden over the past week (OR = 1.168, p < .001) predicted presence of a last wish at t0. Common themes of last wishes were Travel, Activities, Regaining health, Quality of life, Being with family and friends, Dying comfortably, Turn back time, and Taking care of final matters. The most frequent theme was Travel, at both t0 (31%) and t1 (39%). Themes did not differ between SPC settings, neither at t0 nor at t1. Longitudinal analyses (t0-t1) showed no significant intra-personal changes in the presence or any themes of last wishes over time. CONCLUSIONS: In this late phase of their illness, many patients voiced last wishes. Our study suggests working with such wishes as a framework for person-centered care. Comparisons of SPC settings indicate that individualized approaches to patients' last wishes, rather than setting-specific approaches, may be important.

How does spirituality manifest in family caregivers of terminally ill cancer patients? A qualitative secondary analysis.

OBJECTIVE: Considering the risk of spiritual distress among terminally ill patients, experts long agree that spiritual care has to be an integral component of palliative care. Despite this consensus, the role of spirituality among family caregivers remains largely unexplored. We aimed to describe how spirituality manifests in the lived experience of family caregivers (FCs) in a palliative care context. METHOD: As part of a secondary analysis, data derived from two qualitative primary studies on FCs' burdens and needs in the context of caring for a patient with a diagnosis of incurable cancer. Previously transcribed interviews were examined by means of a thematic analysis, transcending the focus of the primary studies to examine how spirituality arises and/or persists in the life of FCs from the time of diagnosis of incurable cancer up until bereavement. RESULTS: Twenty-nine narratives were explored and all included spirituality as a relevant theme. Analysis revealed four aspects associated with the presence of spirituality among FCs' experiences: "Connectedness," "Religious Faith," "Transcendence," "Hope," and a fifth overarching aspect which we named "Ongoing integration of spiritual experience." Spirituality appeared as a multilayered phenomenon and was shaped individually among FCs' narratives. SIGNIFICANCE OF RESULTS: In view of the results, exploring and discussing spirituality and underlying experiences in the situation as an FC seems likely to widen the perspective on FCs' problems and needs. Further research on spiritual needs among FCs of patients with incurable life-limiting cancer is deemed necessary.

Supportive care needs and service use during palliative care in family caregivers of patients with advanced cancer: a prospective longitudinal study.

PURPOSE: This study aimed to investigate the supportive care needs of family caregivers (FCs) of advanced cancer patients and their support service use at the beginning of specialist inpatient palliative care (SIPC), near the patient's death, and during bereavement. METHODS: FCs reported their needs using the Family Inventory of Needs (FIN), along with their utilization of psychosocial and bereavement support services at the beginning (N = 232) and 6-9 months after SIPC (N = 160). RESULTS: At the beginning of SIPC, mean of 16.9 of 20 needs were reported to be highly important, and 12.2 were reported to be met. At the time of the patient's death, 16.8 needs were highly important, and 13.8 were met. At both time points, the highest ranked need was related to information about changes in the patient's condition (100% vs. 99%), and the most frequently unmet need was related to feeling hope (73% vs. 71%). Multivariate linear regression analysis revealed a low education level to be consistently related to a greater number of highly important needs. Higher satisfaction with care and better social support was related to a greater number of met needs. Twenty-five percent of FCs had accessed at least one psychosocial support service prior to SIPC, and 30% had done so during bereavement. Among non-users of support services, > 75% indicated sufficient informal support as a barrier to service use. CONCLUSIONS: The findings offer a useful guide for adequately addressing FCs' needs in an effort to optimize FC support. However, only a subgroup of the FCs used support services. Better information and provision of tailored services might improve FCs' situations in the future.

Need for additional professional psychosocial and spiritual support in patients with advanced diseases in the course of specialist palliative care - a longitudinal observational study.

BACKGROUND: We investigated the need for additional professional support and associated factors in patients (pts) at initiation and in the course of in- and outpatient specialist palliative care (I-SPC/O-SPC). METHODS: Pts entering an urban SPC network consecutively completed questionnaires on psychosocial/spiritual problems and support needs within 72 h (T0) as well as within the first 6 weeks (T1) of SPC. Hierarchical linear regression analysis was used to investigate the impact of sociodemographic / disease-related variables, psychological / physical burden, social support, and SPC setting on the extent of support needs. RESULTS: Four hundred twenty-five pts (70 years, 48% female, 91% cancer, 67% O-SPC) answered at T0, and 167 at T1. At T0, main problems related to transportation, usual activities, and dependency (83-89%). At T1, most prevalent problems also related to transportation and usual activities and additionally to light housework (82-86%). At T0, support needs were highest for transportation, light housework, and usual activities (35-41%). Cross-sectional comparisons of SPC settings revealed higher problem scores in O-SPC compared to I-SPC at T0 (p = .039), but not at T1. Support need scores were higher in O-SPC at T0 (p < .001), but lower at T1 (p = .039). Longitudinal analyses showed a decrease of support need scores over time, independent from the SPC setting. At T0, higher distress (p = .047), anxiety/depression (p < .001), physical symptom burden (p < .001) and I-SPC (p < .001) were associated with higher support need scores (at T1: only higher distress, p = .037). CONCLUSION: Need for additional professional psychosocial/spiritual support was identified in up to 40% of pts. with higher need at the beginning of O-SPC than of I-SPC. During SPC, this need decreased in both settings, but got lower in O-SPC than in I-SPC over time. Support need scores were not only associated with psychological, but also physical burden.

Impact, challenges and limits of inpatient palliative care consultations - perspectives of requesting and conducting physicians.

BACKGROUND: Inpatient palliative care consultation (IPCC) teams have been established to improve care for patients with specialist palliative care (PC) needs throughout all hospital departments. The objective is to explore physicians' perceptions on the impact of IPCC, its triggers, challenges and limits, and their suggestions for future service improvements. METHODS: A Qualitative study drawing on semi-structured interviews with 10 PC specialists of an IPCC team and nine IPCC requesting physicians from oncology and non-oncological departments of a university hospital. Analysis was performed using qualitative content analysis. RESULTS: PC specialists and IPCC requesting physicians likewise considered organization of further care and symptom-burden as main reasons for IPCC requests. The main impact however was identified from both as improvement of patients' (and their caregivers') coping strategies and relief of the treating team. Mostly, PC specialists emphasized a reduction of symptom burden, and improvement of further care. Challenges in implementing IPCC were lack of time for both. PC specialists addressed requesting physicians' skepticism towards PC. Barriers for realization of IPCC included structural aspects for both: limited time, staff capacities and setting. PC specialists saw problems in implementing recommendations like disagreement towards their suggestions. All interviewees considered education in PC a sensible approach for improvement. CONCLUSIONS: IPCC show various positive effects in supporting physicians and patients, but are also limited due to structural problems, lack of knowledge, insecurity, and skepticism by the requesting physicians. To overcome some of these challenges implementation of PC education programs for all physicians would be beneficial.

Ethical challenges in family caregivers of patients with advanced cancer - a qualitative study.

BACKGROUND: Caring for patients with advanced or terminal diseases can confront family caregivers (FC) with ethical challenges. The present study aims at tracing paths connected to ethical challenges among FC of advanced cancer patients by exploring morally troubling situations and related burden, as well as strategies to handle the situation and experience of moral distress from the grieving FC's perspective. METHODS: Within a qualitative design, interviews with 12 grieving FC were conducted using a semi-structured interview guide. Data were analysed using grounded theory and abductive reasoning. RESULTS: Core phenomena identified were two paths connected to ethical challenges among FC. Ethical challenges occurred in the context of difficult decision-making (Path 1) and in the context of lacking decision-making options when no decision was to be made by FC (Path 2). We found each path to be triggered by distinct sets of morally troubling situations that occurred during the patient's disease trajectory. In the course of difficult decision-making (Path 1), detrimental external factors could add emotional stress, thus making the decision-making process burdensome. FC used various proactive strategies to overcome those detrimental factors and/or to make the decision. Decisions in conflict with FCs' own moral expectations and values led to moral distress, generating painful emotions. When no decision was to be made by FC (Path 2), FC felt powerless and overrun, which was associated with major emotionality in terms of anxiety and confusion. Either detrimental factors aggravated these feelings to paralyzing shock, or internal resources enabled FC to accept the situation. While acceptance prevented moral distress, paralyzing shock often caused a sense of not meeting their their own moral expectations and values, resulting in moral distress. In both paths, factors were identified that helped FC finding closure and prevented moral residue. Nevertheless, some FC experienced residual moral distress months after the morally troubling situation had occurred. CONCLUSION: Findings provide first information towards understanding paths leading to ethical challenges in FC and can help clinicians to minimize associated emotional burden and moral distress.

Systematic symptom and problem assessment at admission to the palliative care ward - perspectives and prognostic impacts.

BACKGROUND: Symptom assessment is essential in palliative care, but holds challenges concerning implementation and relevance. This study aims to evaluate patients' main symptoms and problems at admission to a specialist inpatient palliative care (SIPC) ward using physician proxy- and patient self-assessment, and aims to identify their prognostic impact as well as the agreement between both assessments. METHODS: Within 12 h after admission, palliative care specialists completed the Symptom and Problem Checklist of the German Hospice and Palliative Care Evaluation (HOPE-SP-CL). Patients either used the new version of the minimal documentation system for patients in palliative care (MIDOS) or the Integrated Palliative Care Outcome Scale (IPOS) plus the Distress Thermometer (DT). RESULTS: Between 01.01.2016-30.09.2018, 1206 patients were included (HOPE-SP-CL 98%; MIDOS 21%, IPOS 34%, DT 27%) whereof 59% died on the ward. Proxy-assessment showed a mean HOPE-SP-CL Total Score of 24.6 ± 5.9 of 45. Most frequent symptoms/problems of at least moderate intensity were weakness (95%), needs of assistance with activities of daily living (88%), overburdening of family caregivers (83%), and tiredness (75%). Factor analysis identified four symptom clusters (SCs): (1) Deteriorated Physical Condition/Decompensation of Home Care, (2) Emotional Problems, (3) Gastrointestinal Symptoms and (4) Other Symptoms. Self-assessment showed a mean MIDOS Total Score of 11.3 ± 5.3 of 30, a mean IPOS Total Score of 32.0 ± 9.0 of 68, and a mean distress of 6.6 ± 2.5 of 10. Agreement of self- and proxy-assessment was moderate for pain (ƙ = 0.438) and dyspnea (ƙ = 0.503), fair for other physical (ƙ = 0.297 to 0.394) and poor for psychological symptoms (ƙ = 0.101 to 0.202). Multivariate regression analyses for single symptoms and SCs revealed that predictors for dying on the SIPC ward included impaired ECOG performance status, moderate/severe dyspnea, appetite loss, tiredness, disorientation/confusion, and the SC Deteriorated Physical Condition/Decompensation of Home Care. CONCLUSION: Admissions to a SIPC ward are mainly caused by problems impairing mobility and autonomy. Results demonstrate that implementation of self- and reliability of proxy- and self-assessment is challenging, especially concerning non-physical symptoms/problems. We identified, specific symptoms and problems that might provide information needed for treatment discussions regarding the medical prognosis.

Evaluation of a communication skills training to facilitate addressing palliative care related topics in advanced cancer patients: study protocol of a multicenter randomized controlled trial (PALLI-KOM).

BACKGROUND: Early integration of palliative care concurrently to standard cancer care is associated with several benefits for patients and their caregivers. However, communication barriers on part of the caring physicians often impede a timely referral to palliative care. This study describes the protocol of the evaluation of a communication skills training aiming to strengthen the ability of physicians to address palliative care related topics adequately and early during disease trajectory. METHODS: We will implement a communication skills training and evaluate it within a prospective, multi-centered, two-armed randomized controlled trial (RCT), which will be conducted at four sites in Germany. Eligible subjects are all physicians treating patients with advanced cancer in their daily routine. An intervention group (IG) receiving a group training will be compared to a wait-list control group (CG) receiving the training after completion of data collection. At pre- and post-measurement points, participants will conduct videotaped conversations with standardized simulated patients (SP). Primary outcome will be the external rating of communication skills and consulting competencies addressing palliative care related topics. Secondary outcomes on core concepts of palliative care, basic knowledge, attitudes, confidence and self-efficacy will be assessed by standardized questionnaires and self-developed items. A further external assessment of the quality of physician-patient-interaction will be conducted by the SP. Longitudinal quantitative data will be analyzed using covariate-adjusted linear mixed-models. DISCUSSION: If the communication skills training proves to be effective, it will provide a feasible intervention to promote an earlier communication of palliative care related topics in the care of advanced cancer patients. This would help to further establish early integration of palliative care as it is recommended by national and international guidelines. TRIAL REGISTRATION: German Clinical Trials Register DRKS00017025 (date of registration: 4 June 2019).

Identifying Expectations of Delayed Return to Work in Patients with Prostate Cancer at the Beginning of a Cancer Rehabilitation Program.

Purpose To investigate factors associated with expectations of delayed return to work (RTW) in patients with prostate cancer recently admitted to a cancer rehabilitation program. Methods In this multicenter study, data about expected time until RTW and potential correlates (personal, medical, psychosocial and work-related factors) were obtained from 822 employed cancer rehabilitation participants at the beginning of the program. Participants expecting early RTW (≤ 3 months) and delayed RTW (> 3 months) were compared. Hierarchical multivariate logistic regression was applied to study which factors are associated with expecting delayed RTW. Results In total, 171 cancer rehabilitation participants (21%) expected delayed RTW. Group comparison showed education, type of occupation, income, number of comorbid conditions, tumor stage according to the staging system of the Union for International Cancer Control (UICC), anxiety and depression, quality-of-life functioning scales, urinary and treatment-related symptoms, duration of sick leave, subjective work ability, perceived ability to return to the former job, intention to apply for a disability pension, effort-reward-imbalance and occupational stress to be associated in bivariate analysis with participants' expectations. Multivariate analysis revealed UICC tumor stage III (compared to stages I/II, OR 2.36), lower subjective work ability (OR 0.82), perceived inability to return to the former job (OR 1.88) and intention to apply for a disability pension (OR 1.94) to increase the likelihood of expecting delayed RTW. Conclusions Negative or non-beneficial RTW expectations, which are related to self-perception and behavioral intention, seem to be key factors for expecting delayed RTW. Interventions to early identify and adjust such expectations might empower cancer rehabilitation participants to develop appropriate expectations for work recovery.

Exploring the gender dimension of problems and needs of patients receiving specialist palliative care in a German palliative care unit - the perspectives of patients and healthcare professionals.

BACKGROUND: Gender disparities of specific symptoms and problems have frequently been observed in palliative care patients, but research rarely focused on the range of problems and needs affected by gender. METHODS: We conducted semi-structured interviews with patients and healthcare professionals (HCPs) of a hospital-based palliative care unit to examine gender effects on patients' problems and needs based on systematically gathered qualitative data. Content analysis was used to identify emerging themes with data coded using MAXQDA. RESULTS: Ten patients (5 female, 5 male) and 17 HCPs (12 female, 5 male) were interviewed. Seven categories of gender-specific problems and needs emerged: "physical symptoms, care and body image", "psychological symptoms and emotional response", "interaction with the palliative care team", "use of professional supportive measures", "activation of informal social networks", "decision-making", and "preservation of autonomy and identity". Both patients and HCPs felt that female patients adopt more expressive coping strategies, have stronger need for communication with and support of HCPs, and activate an extended social network for support and decision-making. Further, both groups thought that male patients mainly rely on social support from partners, have higher expectations to be cared for at home, and have higher need for preservation of autonomy. CONCLUSION: Gender relevantly impacts patients' problems and needs during palliative care. Therefore, gender-sensitive palliative care that acknowledges the patient's individual situation and respective ramifications are required.

Psychological burden in family caregivers of patients with advanced cancer at initiation of specialist inpatient palliative care.

BACKGROUND: This study prospectively evaluated distress, depressive and anxiety symptoms as well as associated factors in family caregivers (FC) of advanced cancer patients at initiation of specialist inpatient palliative care. METHODS: Within 72 h after the patient's first admission, FCs were asked to complete German versions of the Distress Thermometer, Generalized Anxiety Disorder 7-item scale (GAD-7), Patient Health Questionnaire depression module 9-item scale (PHQ-9) for outcome measure. Multivariate logistic regression analyses were used to identify associated factors. RESULTS: In 232 FCs (62% spouses/partners), mean level of distress was 7.9 (SD 1.8; range, 2-10) with 95% presenting clinically relevant distress levels. Most frequent problems were sadness (91%), sorrows (90%), anxiety (78%), exhaustion (77%) and sleep disturbances (73%). Prevalence rates of moderate to severe anxiety and depressive symptoms were 47 and 39%, respectively. Only 25% of FCs had used at least one source of support previously. In multivariate regression analysis, being female (OR 2.525), spouse/partner (OR 2.714), exhaustion (OR 10.267), and worse palliative care outcome ratings (OR 1.084) increased the likelihood for moderate to severe anxiety symptom levels. Being female (OR 3.302), low socio-economic status (OR 6.772), prior patient care other than home-based care (OR 0.399), exhaustion (OR 3.068), sleep disturbances (OR 4.183), and worse palliative care outcome ratings (OR 1.100) were associated with moderate to severe depressive symptom levels. CONCLUSIONS: FCs of patients presenting with indication for specialist palliative care suffer from high distress and relevant depressive and anxiety symptoms, indicating the high need of psychological support not only for patients, but also their FCs. Several socio-demographic and care-related risk-factors influence mental burden of FCs and should be in professional caregivers' focus in daily clinical practice.

Return to work in prostate cancer survivors - findings from a prospective study on occupational reintegration following a cancer rehabilitation program.

BACKGROUND: This prospective multicentre-study aimed to analyze return to work (RTW) among prostate cancer survivors 12 months after having attended a cancer rehabilitation program and to identify risk factors for no and late RTW. METHODS: Seven hundred eleven employed prostate cancer survivors treated with radical prostatectomy completed validated self-rating questionnaires at the beginning, the end, and 12 months post rehabilitation. Disease-related data was obtained from physicians and medical records. Work status and time until RTW were assessed at 12-months follow-up. Data were analyzed by univariate analyses (t-tests, chi-square-tests) and multivariate logistic regression models (OR with 95% CI). RESULTS: The RTW rate at 12-months follow-up was 87% and the median time until RTW was 56 days. Univariate analyses revealed significant group differences in baseline personal characteristics and health status, psychosocial well-being and work-related factors between survivors who had vs. had not returned to work. Patients' perceptions of not being able to work (OR 3.671) and feeling incapable to return to the former job (OR 3.162) were the strongest predictors for not having returned to work at 12-months follow-up. Being diagnosed with UICC tumor stage III (OR 2.946) and patients' perceptions of not being able to work (OR 4.502) were the strongest predictors for late RTW (≥ 8 weeks). CONCLUSIONS: A high proportion of prostate cancer survivors return to work after a cancer rehabilitation program. However, results indicate the necessity to early identify survivors with low RTW motivation and unfavorable work-related perceptions who may benefit from intensified occupational support during cancer rehabilitation.