"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.

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.

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.

Association between oncologists' death anxiety and their end-of-life communication with advanced cancer patients.

OBJECTIVE: Early and open communication of palliative care (PC) and end-of-life (EoL)-related issues in advanced cancer care is not only recommended by guidelines, but also preferred by the majority of patients. However, oncologists tend to avoid timely addressing these issues. We investigated the role of oncologists' personal death anxiety in the rare occurrence of PC/EoL conversations. METHODS: We conducted a multicenter cross-sectional study assessing oncologists' strengths and difficulties in self-reported and externally rated PC/EoL communication skills as well as their association with death anxiety. Death anxiety was assessed via the Thanatophobia-Scale. PC/EoL communication skills were assessed via validated questionnaires and study-specific items plus an external rating of videotaped medical consultation with simulated patients. A general linear model was conducted to analyze associations. RESULTS: One hundred fifty-three oncologists participated (age: M(SD) = 32.9 years (6.9), 59.5% female). Both from the external and from their own perspective, oncologists had difficulties in addressing PC and the EoL. They avoided those aspects more than other topics in consultations with advanced cancer patients. Death anxiety was associated with more avoidant self-reported communication strategies, lower self-efficacy, less confidence in discussing the EoL and less confidence in discussing patients' goals and wishes, but was not associated with externally rated PC/EoL communication. CONCLUSIONS: Oncologists have experienced and externally observable difficulties in addressing PC and the EoL. Oncologists with higher death anxiety subjectively experience more difficulties. Group supervision and consultation offers might be means to empower oncologists, increase awareness of personal fears and enhance confidence and self-efficacy. This might facilitate earlier PC/EoL communication.

Screening versus multidimensional assessment of symptoms and psychosocial distress in cancer patients from the time of incurability.

Objective: Previous symptom prevalence studies show a diverse spectrum of symptoms and a large diversity in symptom intensities in patients being just diagnosed as having incurable cancer. It is unclear, how physical symptoms and psychosocial burden should be recorded in order to determine the variable need for palliative care and further support. Therefore, we compared two different strategies for detecting physical symptoms and psychosocial burden of patients with newly diagnosed incurable cancer and their effects on the further course of the disease. Methods: SCREBEL is a controlled, randomized, non-blinded, longitudinal study of the research network of the Palliative Medicine Working Group (APM) of the German Cancer Society (DKG). We compared: a less complex repeated brief screening for symptoms and burden in patients using the NCCN Distress Thermometer and IPOS questionnaire versus a multidimensional comprehensive assessment using the FACT-G and their entity-specific questionnaires, the PHQ4 scales, SCNS-34-SF, IPOS and NCCN Distress Thermometer. The primary study endpoint was quality of life (QoL), measured using FACT-G, after six months. Secondary study endpoints were QoL by using evaluation of secondary scores (NCCN DT, IPOS, PHQ4, SCNS-SF-34G) at time 6 months, the number of hospital days, the utilization of palliative care, emergency services, and psychosocial care structures. To assess effects and differences, multiple linear regression models were fitted and survival analyses were conducted. Results: 504 patients were included in the study. 262 patients were lost to follow-up, including 155 fatalities. There were no significant differences between the low-threshold screening approach and a comprehensive assessment with respect to symptoms and other aspects of QoL. Using the IPOS, we were able to measure an improvement in the quality of life in the low-threshold screening arm by a decrease of 0.67 points (95%-CI: 0.34 to 0.99) every 30 days. (p<0.001). Data on the involvement of emergency facilities and on supportive services were insufficient for analysis. Conclusion: A comprehensive, multidimensional assessment did not significantly differ from brief screening in preserving several dimensions of quality of life. These findings may positively influence the implementation of structured low-threshold screening programs for supportive and palliative needs in DKG certified cancer centers.DRKS -No. DRKS00017774 https://drks.de/search/de/trial/DRKS00017774.

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.

Testicular germ cell tumours' clinical stage I: comparison of surveillance with adjuvant treatment strategies regarding recurrence rates and overall survival-a systematic review.

PURPOSE: Testicular germ cell tumours (GCTs) represent the most common malignancy in young adult males with two thirds of all cases presenting with clinical stage I (CSI). Active surveillance is the management modality mostly favoured by current guidelines. This systematic review assesses the treatment results in CSI patients concerning recurrence rate and overall survival in non-seminoma (NS) and pure seminoma (SE) resulting from surveillance in comparison to adjuvant strategies. METHODS/SYSTEMATIC REVIEW: We performed a systematic literature review confining the search to most recent studies published 2010-2021 that reported direct comparisons of surveillance to adjuvant management. We searched Medline and the Cochrane Library with additional hand-searching of reference lists to identify relevant studies. Data extraction and quality assessment of included studies were performed with stratification for histology (NS vs. SE) and treatment modalities. The results were tabulated and evaluated with descriptive statistical methods. RESULTS: Thirty-four studies met the inclusion criteria. In NS patients relapse rates were 12 to 37%, 0 to 10%, and 0 to 11.8% for surveillance, chemotherapy and for retroperitoneal lymph node dissection (RPLND) while overall survival rates were 90.7-100%, 91.7-100%, and 97-99.1%, respectively. In SE CSI, relapse rates were 0-22.3%, 0-5%, and 0-12.5% for surveillance, radiotherapy, chemotherapy, while overall survival rates were 84.1-98.7%, 83.5-100%, and 92.3-100%, respectively. CONCLUSION: In both histologic subgroups, active surveillance offers almost identical overall survival as adjuvant management strategies, however, at the expense of higher relapse rates. Each of the management strategies in CSI GCT patients have specific merits and shared-decision-making is advised to tailor treatment.

Addressing palliative care and end-of-life issues in patients with advanced cancer: a systematic review of communication interventions for physicians not specialised in palliative care.

OBJECTIVE: To identify and summarise evaluated interventions aiming to improve the communication of palliative care (PC) and end-of-life (EoL) issues in physicians caring for cancer patients. Such interventions are needed with regard to the aim of an earlier communication of those issues in oncology daily practice, which is associated with a range of benefits for patients and caregivers but is often impeded by physicians' communication insecurities. DESIGN: Systematic review based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. DATA SOURCES: Relevant publications were systematically searched in MEDLINE, PsycINFO, CINAHL and Web of Science databases in September 2020 with an update in July 2021. ELIGIBILITY CRITERIA: We included publications reporting a quantitative evaluation of a communication intervention on one or more PC/EoL issues with a communication-related main outcome. Target group had to be physicians caring for cancer patients non-specialist in PC. DATA EXTRACTION AND SYNTHESIS: Two independent raters extracted intervention characteristics, publication characteristics and publication quality. Results were narratively synthesised. RESULTS: 24 publications reporting 22 interventions were included. 13 publications reported randomised controlled trials. A majority of the interventions addressed one specific PC/EoL issue, most often breaking bad news. Teaching strategies mostly involved role-plays. Target group were mainly oncologists. In addition to self-reported outcome measurements for evaluation, most publications also reported the use of external rating data. All but one publication reported significant intervention effects on at least one outcome parameter. Publication quality was overall moderate. CONCLUSIONS: The empirically tested communication interventions on PC/EoL issues seem to effectively improve physicians' communication. Future interventions should focus on other issues than breaking bad news, such as preparing for the future. Target group should also be organ-specific oncologists, as all primary caring physicians are responsible for timely communication. Our risk-of-bias assessment revealed some weaknesses, indicating that more high-quality studies for evaluation are needed. PROSPERO REGISTRATION NUMBER: CRD42020191054.

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.

Diagnosis, Therapy and Follow-up of Cervical Cancer. Guideline of the DGGG, DKG and DKH (S3-Level, AWMF Registry No. 032/033OL, May 2021) - Part 2 with Recommendations on Psycho-oncology, Rehabilitation, Follow-up, Recurrence, Palliative Therapy and Healthcare Facilities.

Aim This is an update of the interdisciplinary S3-guideline on the Diagnosis, Therapy and Follow-up of Cervical Cancer (AWMF Registry No. 032/033OL), published in March 2021. The work on the updated guideline was funded by German Cancer Aid (Deutsche Krebshilfe) as part of the German Guideline Program in Oncology. The guideline was coordinated by the German Society of Gynecology and Obstetrics ( Deutsche Gesellschaft für Gynäkologie und Geburtshilfe , DGGG) and the Working Group on Gynecological Oncology ( Arbeitsgemeinschaft Gynäkologische Onkologie , AGO) of the German Cancer Society ( Deutsche Krebsgesellschaft , DKG). Method The process used to update the 2014 S3-guideline was based on an appraisal of the available evidence using the criteria of evidence-based medicine, adaptations of existing evidence-based national and international guidelines or - if evidence was lacking - on the consensus of the specialists involved in compiling the update. After an initial review of the current literature was carried out according to a prescribed algorithm, several areas were identified which, in contrast to the predecessor version from September 2014, required new recommendations or statements which would take account of more recently published literature and the recent appraisal of new evidence. Recommendations The short version of this guideline consists of recommendations and statements on palliative therapy and follow-up of patients with cervical cancer. The most important aspects included in this updated guideline are the new FIGO classification published in 2018, the radical open surgery approach used to treat cervical cancer up to FIGO stage IB1, and the use of the sentinel lymph node technique for tumors ≤ 2 cm. Other changes include the use of PET-CT, new options in radiotherapy (e.g., intensity-modulated radiotherapy, image-guided adaptive brachytherapy), and drug therapies to treat recurrence or metastasis.

Diagnosis, Therapy and Follow-up of Cervical Cancer. Guideline of the DGGG, DKG and DKH (S3-Level, AWMF Registry No. 032/033OL, May 2021) - Part 1 with Recommendations on Epidemiology, Screening, Diagnostics and Therapy.

Aim This update of the interdisciplinary S3 guideline on the Diagnosis, Therapy and Follow-up of Cervical Cancer (AWMF Registry No. 032/033OL) was published in March 2021. This updated guideline was funded by German Cancer Aid (Deutsche Krebshilfe) as part of the German Guideline Program in Oncology. The guideline was coordinated by the German Society of Gynecology and Obstetrics ( Deutsche Gesellschaft für Gynäkologie und Geburtshilfe , DGGG) and the Working Group on Gynecological Oncology ( Arbeitsgemeinschaft Gynäkologische Onkologie , AGO) of the German Cancer Society ( Deutsche Krebsgesellschaft , DKG). Method The process of updating the S3 guideline dating from 2014 was based on an appraisal of the available evidence using the criteria of evidence-based medicine, adaptations of existing evidence-based national and international guidelines or - if evidence was lacking - on a consensus of the specialists involved in compiling the update. After an initial review of the current literature was carried out according to a prescribed algorithm, several areas were identified which, in contrast to the predecessor version from September 2014, required new recommendations or statements which took account of more recently published literature and the appraisal of the new evidence. Recommendations The short version of this guideline consists of recommendations and statements on the epidemiology, screening, diagnostic workup and therapy of patients with cervical cancer. The most important new aspects included in this updated guideline include the newly published FIGO classification of 2018, the radical open surgery approach for cervical cancers up to FIGO stage IB1, and use of the sentinel lymph node technique for tumors ≤ 2 cm. Other changes include the use of PET-CT, new options in radiotherapy (e.g., intensity-modulated radiotherapy, image-guided adaptive brachytherapy), and drug therapies to treat recurrence or metastasis.

First-line salvage treatment options for germ cell tumor patients failing stage-adapted primary treatment : A comprehensive review compiled by the German Testicular Cancer Study Group.

PURPOSE: In this review, we summarize and discuss contemporary treatment standards and possible selection criteria for decision making after failure of adjuvant or first-line cisplatin-based chemotherapy for primarily localized or metastatic germ cell tumors. METHODS: This work is based on a systematic literature search conducted for the elaboration of the first German clinical practice guideline to identify prospective clinical trials and retrospective comparative studies published between Jan 2010 and Feb 2021. Study end points of interest were progression-free (PFS) and overall survival (OS), relapse rate (RR), and/or safety. RESULTS: Relapses of clinical stage I (CS I) patients irrespective of prior adjuvant treatment after orchiectomy are treated stage adapted in accordance for primary metastatic patients. Surgical approaches for sole retroperitoneal relapses are investigated in ongoing clinical trials. The appropriate salvage chemotherapy for metastatic patients progressing or relapsing after first-line cisplatin-based chemotherapy is still a matter of controversy. Conventional cisplatin-based chemotherapy is the international guideline-endorsed standard of care, but based on retrospective data high-dose chemotherapy and subsequent autologous stem cell transplantation may offer a 10-15% survival benefit for all patients. Secondary complete surgical resection of all visible residual masses irrespective of size is paramount for treatment success. CONCLUSIONS: Patients relapsing after definite treatment of locoregional disease are to be treated by stage-adapted first-line standard therapy for metastatic disease. Patients with primary advanced/metastatic disease failing one line of cisplatin-based combination chemotherapy should be referred to GCT expert centers. Dose intensity is a matter of ongoing debate, but sequential high-dose chemotherapy seems to improve patients' survival.

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.

Acceptance and Benefits of Two Different Strategies to Timely Integrate Specialist Palliative Care into Routine Cancer Care: A Randomized Pilot Study.

BACKGROUND/AIMS: The aim of this study is to investigate the acceptance and benefits of two different strategies to timely integrate specialist palliative care (SPC) in routine cancer care: commonly recommended early SPC counselling versus an informational brochure plus SPC counselling upon patients' request. METHODS: Patients diagnosed with incurable cancer within the last 6-12 weeks were sequentially randomized. Endpoints were acceptance of the two strategies after 3 months as well as the use of SPC counselling and psychosocial support, presence of advance directives, palliative care outcome (Integrated Palliative care Outcome Scale [IPOS]), and psychosocial distress (Distress Thermometer [DT]) after 3 and 6 months. In a qualitative part, SPC consultations were analyzed using a content analysis. RESULTS: Overall, 43 patients received SPC counselling and 37 a brochure with SPC counselling on demand. In the brochure group, only one patient later registered for SPC counselling from own initiative. SPC timing was appropriate in 70% of patients (75% counselling/61% brochure, n.s.). Sufficiency, helpfulness and relevance of information, provision of security, and help with finding contacts for specific support were perceived adequate in both groups. No significant differences were found regarding potential effects of the interventions on IPOS or DT after 3 and 6 months. The use of psychosocial support was comparable between the groups and 4 patients had new advance directives (3 counselling/1 brochure). Five key themes of SPC consultations were identified: symptoms, rapport, coping, illness understanding, and advance care planning. CONCLUSIONS: Both SPC integration strategies were well accepted. However, patients seem not to benefit from a brochure in terms of initiating SPC counselling timely after a palliative cancer diagnosis.

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.

Perceived Positive and Negative Life Changes in Testicular Cancer Survivors.

Background and objectives: Despite a generally good prognosis, testicular cancer can be a life-altering event. We explored perceived positive and negative life changes after testicular cancer in terms of frequency, demographic and disease-related predictors, and associations with depression and anxiety. Materials and methods: All testicular cancer survivors receiving follow-up care at two specialized outpatient treatment facilities were approached at follow-up visits or via mail. We assessed a total of N = 164 patients (66% participation rate, mean time since diagnosis: 11.6 years, SD = 7.4) by the Posttraumatic Growth Inventory (PTGI, modified version assessing positive and negative changes for each of 21 items), Patient-Health-Questionnaire-9 (PHQ-9), and Generalized-Anxiety-Disorder-Scale-7 (GAD-7). We conducted controlled multivariate regression analyses. Results: Most survivors (87%) reported at least one positive change (mean number: 7.2, SD = 5.0, possible range: 0-21). The most frequent perceived positive changes were greater appreciation of life (62%), changed priorities in life (62%), and ability rely on others (51%). At least one negative change was perceived by 33% (mean number of changes: 1.1, SD = 2.5). Negative changes were most frequent for decreases in self-reliance (14%), personal strength (11%), and ability to express emotions (9%). A higher socioeconomic status was associated with more positive changes (ß = 0.25, 95% CI 0.08 to 0.42); no other association with demographic and disease-related predictors emerged. While positive life changes were not associated with depression (ß = -0.05, 95% CI -0.17 to 0.07) and anxiety (ß = 0.00, 95% CI -0.13 to 0.13), more negative life changes were significantly associated with higher depression (ß = 0.15, 95% CI -0.03 to 0.27) and anxiety (ß = 0.23, 95% CI 0.11 to 0.36). There was no significant interaction of positive and negative changes on depression or anxiety. Conclusions: Although positive life changes after testicular cancer are common, a significant number of survivors perceive negative changes in life domains that have been primarily investigated in terms of personal growth. Early identification of and psychosocial support for patients who perceive predominantly negative changes may contribute to prevention of prolonged symptoms of anxiety and depression.

Gender-specific problems and needs of family caregivers during specialist inpatient palliative care: a qualitative study on experiences of family caregivers and healthcare professionals.

BACKGROUND: Previous studies have demonstrated gender-specific impacts on symptoms and problems of patients receiving palliative care; however, there is limited knowledge about the impact of gender on the problems and needs of their family caregivers (FCs). METHODS: Using a qualitative design, semi-structured interviews with FCs and healthcare professionals (HCPs) of a specialist palliative care inpatient ward were conducted. Themes and categories were identified using qualitative content analysis, with data coded using MAXQDA. RESULTS: Ten FCs (6 female, 4 male) and 16 HCPs (8 female, 8 male) were interviewed. Analysis revealed seven main categories of gendered problems and needs: role as FC, physical and emotional burden, self-care and coping strategies, adaptation to new life circumstances, interaction with the palliative care team, use of psychosocial or care-related support, as well as advance care planning and caregiving after inpatient palliative care. Stronger identification with the caregiver role, less consideration of own needs, and more active utilization of professional and informal support were ascribed to female FCs. With regard to male FCs, respondents had the impression of better self-caring strategies, less expressiveness of emotions, less involvement in care and more target-oriented interactions with the palliative care team. CONCLUSIONS: Gender has a relevant impact on roles, coping, communication and support as well as psychosocial needs of FCs of patients receiving palliative care. These gender-related aspects have to be taken into account during palliative care including care for FCs.