Addressing gaps and enhancing experiences in support services for families of pediatric cancer survivors.

BACKGROUND: Childhood cancer's enduring challenges extend beyond primary therapy. Diverse medical and psychosocial services are available to assist families in follow-up care. This interview study sought to gain a thorough understanding of family motives, satisfaction levels, and barriers to utilization. METHODS: The design of this cross-sectional study involves a qualitative content analysis of semi-structured interviews. We interviewed parents of minor cancer survivors within the first 5 years after primary treatment. RESULTS: Survivors readily accessed medical support services when necessary. While parents expressed overall satisfaction with the available services, there was a notable gap in their knowledge regarding appropriate psychosocial and family-orientated services. Barriers to access included geographical distances, time constraints, and the absence of childcare options. CONCLUSION: There are familial challenges and burdens that fall outside the scope of conventional care services. Tailoring services to family-centered needs, providing more information and easier access to interventions might help to reduce barriers. IMPACT: Existing need notwithstanding, families did not frequently utilize psychosocial services as they did medical ones. Identified barriers included lack of awareness, limited availability, long distances, and scheduling conflicts. While many studies primarily focus on adult patients or young adults, the present study examines the gaps and strengths in follow-up care for pediatric cancer survivors and their families. By acknowledging and addressing the unique challenges and strengths of families with pediatric cancer survivors, we can lead to a more tailored and effective follow-up approach that can enhance their overall well-being by minimizing barriers and providing targeted support.

12-Month Trajectories of Health-Related Quality of Life Following Hospitalization in German Cancer Centers-A Secondary Data Analysis.

Patient-reported outcomes (PROs) offer a diverse array of potential applications within medical research and clinical practice. In comparative research, they can serve as tools for delineating the trajectories of health-related quality of life (HRQoL) across various cancer types. We undertook a secondary data analysis of a cohort of 1498 hospitalized cancer patients from 13 German cancer centers. We assessed the Physical and Mental Component Scores (PCS and MCS) of the 12-Item Short-Form Health Survey at baseline (t0), 6 (t1), and 12 months (t2), using multivariable generalized linear regression models. At baseline, the mean PCS and MCS values for all cancer patients were 37.1 and 44.3 points, respectively. We observed a significant improvement in PCS at t2 and in MCS at t1. The most substantial and significant improvements were noted among patients with gynecological cancers. We found a number of significant differences between cancer types at baseline, t1, and t2, with skin cancer patients performing best across all time points and lung cancer patients performing the worst. MCS trajectories showed less pronounced changes and differences between cancer types. Comparative analyses of HRQoL scores across different cancer types may serve as a valuable tool for enhancing health literacy, both among the general public and among cancer patients themselves.

Exploring the perspective of adolescent childhood cancer survivors on follow-up care and their concerns regarding the transition process-A qualitative content analysis.

PURPOSE: In Germany, children diagnosed with cancer survive their initial disease in more than 80%, and the majority will become long-term survivors. Around the age of 18, survivors are transferred to adult healthcare. The transition can be a critical period in the process of care at which many childhood cancer survivors discontinue to participate in regular follow-up care. Hence, the objective of the paper was to explore (a) survivors' attitudes towards pediatric follow-up care and (b) their concerns regarding the transition process to draw conclusions for optimizing pediatric care and transition processes. METHODS: We conducted semi-structured interviews with 21 adolescent childhood cancer survivors between the ages of 14 and 20. The survivors were recruited via a pediatric oncology department of a university hospital in Germany. Based on the principles of qualitative content analysis, a deductive-inductive method according to Kuckartz was applied. RESULTS: Based on the interview guide and derived from the exploratory research questions, two key categories were generated: (a) Survivors' attitudes towards pediatric follow-up care, which encompasses all formal and emotional aspects of survivors regarding follow-up care, and (b) their concerns regarding transition from pediatric to adult healthcare, where hindering and facilitating factors for a successful transition occur. Our results show high satisfaction among survivors with follow-up care. Nevertheless, they wish to be more integrated into processes and the organization of their follow-up care. Most adolescent survivors do not feel ready for transition. CONCLUSION: The integration of survivors into the organization processes and routines, and the promotion of emotional detachment from pediatric health care professionals (HCPs) are important to reduce concerns and uncertainties of adolescent survivors regarding the transition process and to promote subjective readiness for transition. To gain confidence in the adult healthcare, it is crucial to provide tailored education depending on individual requirements and needs and to build trusting relationships between survivors and adult HCPs.

Reintegration into school, kindergarten and work in families of childhood cancer survivors after a family-oriented rehabilitation program.

Objective: To describe the situation of childhood cancer survivors and their parents before and one year after a family-oriented rehabilitation program (FOR) and to identify factors influencing reintegration. Methods: We included parents of children diagnosed with leukemia or central nervous system tumor. We assessed parental functioning using the functioning subscale of the Ulm Quality of Life Inventory for Parents (ULQIE) and children's school/kindergarten related quality of life (parental assessment, subscale KINDL-R). Descriptive analyses, group comparisons and multiple regression analyses on data of 285 parents of 174 children diagnosed with leukemia or central nervous system tumor. Results: Parents reported changes in their work situation (e.g., reduction of working hours) due to their child's diagnosis. Parental functioning increased significantly over time. Children's leukemia diagnosis and shorter time since the end of treatment were associated with higher functioning in parents one year after FOR. Parents reported difficulties in the child's work pace, concentration, stress resilience and empathy. The school/kindergarten-related quality of life (QoL) of the children was lower than in the general population. One year after FOR, most children reintegrated fully in school/kindergarten, partly with support (e.g., integration assistant). No significant predictors for children's reintegration were identified. Discussion: Parents and children experience major changes in their work/school/kindergarten life. One year after FOR most parents reported a reintegration of their children, however the children's school/kindergarten-related QoL remained below average compared to norm values. Even after rehabilitation families of childhood cancer survivors might benefit from psychosocial and practical support offers to support families with the reintegration into work/school/kindergarten.

A Multimodal Lifestyle Psychosocial Survivorship Program in Young Cancer Survivors: The CARE for CAYA Program-A Randomized Clinical Trial Embedded in a Longitudinal Cohort Study.

Importance: There is a lack of trials examining the effect of counseling interventions for child, adolescent, and younger adult (CAYA) cancer survivors. Objective: To assess lifestyle habits and the psychosocial situation of CAYAs to determine the efficacy of needs-based interventions in the CARE for CAYA program (CFC-P). Design, Setting, and Participants: The CFC-P was conducted as a multicenter program in 14 German outpatient clinics, mainly university cancer centers. Recruitment began January 1, 2018; a randomized clinical trial was conducted until July 15, 2019; and intervention was continued as a longitudinal cohort study until March 31, 2021. Data preparation was conducted from April 1, 2021, and analysis was conducted from August 14, 2021, to May 31, 2022. Herein, predefined confirmatory analyses pertain to the RCT and descriptive results relate to the overall longitudinal study. Data analysis was based on the full analysis set, which is as close as possible to the intention-to-treat principle. Intervention: A comprehensive assessment determined needs in physical activity, nutrition and psychooncology. Those with high needs participated in 1 to 3 modules. In the RCT, the IG received 5 counseling sessions plus newsletters, while the control group CG received 1 counseling session. Main Outcomes and Measures: The primary outcome was the change in the rate of CAYAs with high needs at 52 weeks. Secondary outcomes were feasibility, modular-specific end points, satisfaction, quality of life, and fatigue. Results: Of 1502 approached CAYAs aged 15 to 39 years, 692 declined participation. Another 22 CAYAs were excluded, resulting in 788 participants. In the randomized clinical trial, 359 CAYAs were randomized (intervention group [IG], n = 183; control group [CG], n = 176), and 274 were followed up. In the RCT, the median age was 25.0 (IQR, 19.9-32.2) years; 226 were female (63.0%) and 133 male (37.0%). After 52 weeks, 120 CAYAs (87.0%) in the IG and 115 (86.5%) in the CG still had a high need in at least 1 module (odds ratio, 1.04; 95% CI, 0.51-2.11; P = .91). Both groups reported reduced needs, improved quality of life, reduced fatigue, and high satisfaction with the CFC-P. Conclusions and Relevance: In this randomized clinical trial, the implementation of a lifestyle program in this cohort was deemed necessary, despite not meeting the primary outcome. The interventions did not alter the rate of high needs. The results may provide guidance for the development of multimodal interventions in the follow-up care of CAYAs. Trial Registration: German Clinical Trial Register: DRKS00012504.

And what about today? Burden and support needs of adolescent childhood cancer survivors in long-term follow-up care-A qualitative content analysis.

PURPOSE: Childhood cancer affects approximately 2000 children annually in Germany, and there is an increasing number of long-term childhood cancer survivors. Due to developmental tasks, adolescent survivors in long-term follow-up (LTFU) care may face specific challenges and perceive different burden due to their disease. The current study explored (a) the impact of cancer and burden regarding survivorship and (b) supportive needs of adolescent childhood cancer survivors in LTFU care. METHODS: Semistructured qualitative interviews were conducted with 18 adolescent childhood cancer survivors in LTFU care aged 14-18 years (average age 16.4 years). Interviews were transcribed verbatim and analysed using content analysis. RESULTS: Based on the exploratory research questions, two key categories were generated: (1) The impact and burden on survivors' lives during LTFU care and (2) support needs of adolescent childhood cancer survivors in LTFU care. The four subcategories that emerged regarding the impact and burden on survivors' lives during LTFU care were (1) physical consequences, (2) cognitive impairments, (3) difficulties in social interactions, and (4) psychosocial burden. Additionally, two subcategories, (1) practical and (2) emotional support needs of adolescent childhood cancer survivors were identified. CONCLUSIONS: Our results indicate that childhood cancer influences adolescent survivors' life in a negative way even many years after the end of treatment. Furthermore, parents seem to play a crucial role in the survivorship experience of childhood cancer survivors, as they remain keep responsible for most cancer-related concerns even during LTFU care, causing adolescents to persist in the child role. A family systemic approach to care is suggested to facilitate development-specific tasks and to enable adolescents to become autonomous adults. Still, the question remains as to who in the health care system could take over the family systemic tasks.

Predictors of cancer patients' utilization of psychooncological support: Examining patient´s attitude and physician´s recommendation.

PURPOSE: Patients with cancer suffer from a wide range of psychological distress. Nevertheless, in the literature low utilization rates of psychooncological services are reported. Various factors may influence the utilization of professional support during inpatient care. Up to now it is unclear to what extent patients' attitude towards psychooncological support and physicians' recommendation for psychooncological care may influence the utilization. METHODS: In a multicenter longitudinal observational study in Comprehensive Cancer Centers Germany, 1398 patients with mixed cancer diagnoses were assessed at baseline during their hospital stay with respect to psychooncological distress and the need for and use of psychooncological services. RESULTS: Psychooncological support was used by almost 28.4% of patients up to this time. A positive attitude towards psychooncological support was reported by 41.6%. A recommendation of psychooncological support by a physician was received by 16.2%. These patients reported a significant higher level of distress compared to patients who did not received a recommendation. Multivariable logistic regression detected that the utilization rate was 3.79 times higher among patients with positive attitude towards psychooncological support (OR, 3.79; 95% CI 2.51-5.73, p < 0.001). Utilization was 4.21 times more likely among patients who received a physician´s recommendation (OR, 4.21; 95% CI 2.98-5.95, p < 0.001). CONCLUSION: The results of the study provide evidence of the relevance of giving more attention to psychooncological distress and attitudes towards psychooncological care. To reduce reservations, patients need low-threshold information about the psychooncological services offered.

Exploring the perspectives of cancer patients parenting minor children: A qualitative study on family-centered cancer care experiences.

OBJECTIVES: Parents with cancer experience not only disease-related burden but also child- and family-related concerns. According to the German guidelines, all professionals working in oncology are responsible for addressing these burdens and needs and for involving the patient's relatives. This study aims to explore patients' perspectives on their experiences regarding family-centeredness in cancer care. METHODS: We conducted interviews with 18 cancer patients parenting at least one minor child (< 18). The interviews were audio-recorded, transcribed verbatim and analyzed using qualitative content analysis. RESULTS: Most parents reported that their healthcare professionals (HCPs) rarely or not routinely discussed family issues. There was a wide range of ways in which HCPs communicated about family issues. Parents often felt unsure about professionals' responsibilities and many of them expressed a desire for more proactive communication. CONCLUSIONS: The findings suggest that the majority of patients have unmet needs related to comprehensive care as parents. PRACTICE IMPLICATIONS: HCPs need to be sensitized to identify parents facing additional burdens and needs. It is essential that HCPs clarify parents' preferences regarding the extent of involvement of family issues in cancer care.

Effectiveness of a training program for healthcare professionals on parental cancer: Results of a randomized controlled pilot-study.

OBJECTIVE: Cancer patients parenting minor children face specific burden and supportive needs, which are often not adequately addressed by their healthcare professionals (HCPs), due to a lack of knowledge, self-efficacy and competencies. Therefore, we developed a 3-h intervention enhancing HCPs' competencies in caring for these patients. We pilot-evaluated the intervention's feasibility and efficacy, assuming intervention group participants reveal higher improvements over time compared to non-trained participants. METHODS: We conducted a 3-armed randomized controlled pilot-trial (RCT), comparing face-to-face training (F2F), e-Learning (EL), waitlist-control group with three measurements (baseline, post-training, 3-month follow-up). Primary outcome was the competency to approach child- and family-related themes; secondary outcomes were knowledge, self-efficacy in (specific) communication skills. Intervention effects were analyzed using linear mixed models. RESULTS: Participants (n = 152) were mostly female (89%) and psychologists (38%; physicians 26%; nurses 18%). F2F and EL participants reported high training satisfaction. Analyses did not reveal any significant differences on the primary outcome between groups, but indicate positive intervention effects over time regarding secondary outcomes including knowledge and self-efficacy in communication skills. CONCLUSIONS: This is the first pilot-study evaluating a training for HCPs in oncology on parental cancer using a 3-armed RCT. The 3-h training program is a feasible approach and findings indicate to increase HCPs' knowledge and self-efficacy in caring for cancer patients with minor children. Further research is needed to verify preliminary findings of this pilot study. The study was pre-registered within the German Clinical Trial Register (DRKS-00015794).

[Patient-reported outcomes in head and neck cancer treatment: relevance, challenges, and benefit]. / Patientenberichtete Endpunkte in der Kopf-Hals-Tumortherapie: Relevanz, Herausforderungen und Nutzen.

Next to overall survival, quality of life is becoming more and more pivotal for cancer patients. The various domains of quality of life are complex and have different value to each patient. However, not only patients but also health care professionals, the pharmaceutical industry, and regulatory bodies ask: How can quality of life be reliably ascertained in clinical trials? For this purpose, carefully developed and validated specific questionnaires are needed: the patient-reported outcome measures (PROMs). A key challenge is to define how results based on PROMs can be used for shared decision-making. Next to clinical factors such as health and nutritional status, quality of life acts as a prognostic factor for overall survival in cancer. Thus, it is crucial to take quality of life into account in daily clinical practice.

Supportive and psychosocial peer-group interventions for children and adolescents of parents with cancer: A systematic review.

OBJECTIVE: Children and adolescents are highly affected by their parents` cancer disease. This review aims to summarize peer-group interventions for children and adolescents of cancer patients, where those affected have the opportunity to exchange and normalize their feelings among equals. METHODS: A systematic review searching four different databases (MEDLINE, PsycInfo, CINAHL and Web of Science) was conducted. We included studies investigating psychosocial peer-group interventions for offspring of cancer patients. A narrative synthesis summarised the characteristics of the interventions and the findings on effects and evaluation. RESULTS: Ten articles on seven different peer-group interventions were analysed. Research designs and intervention concepts were heterogeneous. Overall, high acceptance, feasibility and positive effects of peer-group support were reported. Significant effects were found in six studies, e.g. in relation to psychological well-being, quality of life and coping skills. CONCLUSION: Peer-group interventions are an accepted and helpful form of support. Providing children and adolescents of cancer patients for example with psychoeducation, community and coping strategies, thereby impacting on psychological well-being. PRACTICE IMPLICATIONS: For comprehensive care, it seems to be important to offer support throughout the parent's cancer journey and to offer support flexibly as needed through group services as well as individual sessions.

Caring for dependent children impacts practical and emotional problems and need for support, but not perceived distress among cancer patients.

OBJECTIVE: More than one in 10 cancer patients care for dependent children. It is unclear whether this status makes a difference in terms of the distress and associated problems they experience, or whether it is linked to differences in the need for or utilization of psychosocial support. METHODS: Secondary analysis of a cross-sectional German study in National Comprehensive Cancer Centers using self-report standardized questionnaires administered to inpatients. Patients living with dependent children (n = 161) were matched by age and sex with a subsample of 161 cancer patients not living with dependent children. The resulting sample was tested for between-group differences in Distress Thermometer (DT) scores and the corresponding DT Problem List. Additionally, between-group differences in measures of the need for and utilization of psychosocial support were examined. RESULTS: More than 50% of all patients suffered from clinically relevant distress. Patients living with dependent children reported significantly more practical (p < 0.001, η2 p = 0.04), family (p < 0.001, η2 p = 0.03), and emotional problems (p < 0.001, η2 p = 0.01). Although reporting a greater need for psychological support, parents with cancer were not found to more frequently utilize any type of psychosocial support. CONCLUSIONS: The specific problems and needs of parents with cancer who care for dependent children are currently not sufficiently addressed in the clinical care pathways. All families should be helped to establish open and honest communication as well as understand the available support systems and what they can provide. Tailored interventions should be implemented for highly distressed families.

Emotional and behavioral problems of pediatric cancer survivors and their siblings: Concordance of child self-report and parent proxy-report.

OBJECTIVE: Childhood cancer confronts families with major challenges. The study aimed at developing an empirical and multi-perspective understanding of emotional and behavioral problems of cancer survivors diagnosed with leukemia and brain tumors and their siblings. Further, the concordance between child self-report and parent proxy-report was examined. METHODS: 140 children (72 survivors, 68 siblings) and 309 parents were included in the analysis (respond rate: 34%). Patients, diagnosed with leukemia or brain tumors, and their families were surveyed on average 7.2 months after the end of intensive therapy. Outcomes were assessed using the German SDQ. Results were compared with normative samples. Data were analyzed descriptively, and group differences between survivors, siblings, and a norm sample were determined using one-factor ANOVA followed by pairwise comparisons. The concordance between the parents and children was determined by calculating Cohen's kappa coefficient. RESULTS: No differences in the self-report of survivors and their siblings were identified. Both groups reported significantly more emotional problems and more prosocial behavior than the normative sample. Although the interrater reliability between parents and children was mostly significant, low concordances were found for emotional problems, prosocial behavior (survivor/parents), and peer relationship problems (siblings/parents). CONCLUSION: The findings point out the importance of psychosocial services in regular aftercare. These should not only focus on survivors, but additionally address the siblings' needs. The low concordance between the parents' and the children's perspectives on emotional problems, prosocial behavior, and peer relationship problems suggests the inclusion of both perspectives to allow needs-based support.

Parent-reported health-related quality of life in pediatric childhood cancer survivors and factors associated with poor health-related quality of life in aftercare.

PURPOSE: Despite advances in cancer treatment, there is a prevalence of pediatric childhood cancer survivors still at risk of developing adverse disease and treatment outcomes, even after the end of treatment. The present study aimed to (1) explore how mothers and fathers assess the health-related quality of life (HRQoL) of their surviving child and (2) evaluate risk factors for poor parent-reported HRQoL in childhood cancer survivors about 2.5 years after diagnosis. METHODS: We assessed parent-reported HRQoL of 305 child and adolescent survivors < 18 years diagnosed with leukemia or tumors of central nervous system (CNS) with the KINDL-R questionnaire in a prospective observational study with a longitudinal mixed-methods design. RESULTS: In agreement with our hypotheses, our results show that fathers rate their children's HRQoL total score as well as the condition-specific domains family (p = .013, d = 0.3), friends (p = .027, d = 0.27), and disease (p = .035, d = 0.26) higher than mothers about 2.5 years after diagnosis. Taking variance of inter-individual differences due to family affiliation into account, the mixed model regression revealed significant associations between the diagnosis of CNS tumors (p = .018, 95% CI [- 7.78, - 0.75]), an older age at diagnosis, (p = .011, 95% CI [- 0.96, - 0.12]), and non-participation in rehabilitation (p = .013, 95% CI [- 10.85, - 1.28]) with poor HRQoL in children more than 2 years after being diagnosed with cancer. CONCLUSION: Based on the results, it is necessary for health care professionals to consider the differences in parental perceptions regarding children's aftercare after surviving childhood cancer. High risk patients for poor HRQoL should be detected early, and families should be offered support post-cancer diagnosis to protect survivors' HRQoL during aftercare. Further research should focus on characteristics of pediatric childhood cancer survivors and families with low participation in rehabilitation programs.

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.

Child- and family-specific communication skills trainings for healthcare professionals caring for families with parental cancer: A systematic review.

INTRODUCTION: As part of high-quality cancer care, healthcare professionals (HCPs) play a significant role in identifying and addressing specific needs of cancer patients parenting minor children. However, HCPs experience various barriers to adequately support parents with cancer. This systematic review explores current CSTs incorporating child- and family- specific modules for HCPs in oncology. Moreover, outcome measures and effectiveness of trainings are systematically investigated. METHODS: The systematic review was registered within PROSPERO (registration code: CRD42020139783). Systematic searches were performed in four databases (PubMed, Cinahl, PsycInfo, Web of Science) in 12/2020, including an update in 12/2021 and 08/2022. Quantitative, primary studies fulfilling the pre-defined inclusion criteria were included. Due to the expected heterogeneity a meta-analysis was not conducted. Study selection and quality assessment were conducted by two independent researchers, data extraction by one. Study quality was assessed using an adapted version of the National Institutes of Health quality assessment tool for pre-post studies without control group. RESULTS: Nine studies were included in this review following an experimental pre-post design only. Two CSTs were specifically designed to improve communication with cancer patients parenting minor children, the remaining seven incorporated a brief family module only. Seven programs were face-to-face trainings, one an e-learning and one a webinar. Eight studies found at least one statistically significant improvement in communication after training. However, quality of most studies was fair. CONCLUSION: This is the first review exploring specific CSTs for HCPs caring for cancer patients parenting minor children. As only two CSTs focused on parental cancer, evidence on the effectiveness of such CSTs is limited. Existing CSTs should be evaluated properly and include details on content of family modules. Further studies including and evaluating specific CSTs focusing on parental cancer are needed in order to strengthen HCPs' competencies to meet specific needs of patients parenting minor children.

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.

Children with cancer and their families after active treatment: analyses of biopsychosocial needs and implications for healthcare - a study protocol.

INTRODUCTION: Patients and families affected by paediatric cancer experience psychosocial burden not only during active treatment but also during follow-up care. Use of health services during follow-up treatment should be organised according to patients' and family members' needs with regard to their physical and mental situation. This study aims (1) at analysing healthcare use (medical and psychosocial) and associated factors in follow-up care of paediatric cancer patients and (2) at investigating the psychosocial situation and support needs of children and their families during follow-up care. Based on the results, recommendations for healthcare planning and for the development of new and the optimisation of existing support offers will be derived. METHODS AND ANALYSIS: We will conduct a prospective observational study using a naturalistic explorative design with quantitative and qualitative methods. Paediatric cancer patients in follow-up care, their parents and siblings will be invited to fill out a questionnaire at three measurement points (baseline, 6 months follow-up, 12 months follow-up; target n=252 complete data sets over all measurement points). Additionally, parents will be interviewed using a semistructured interview guideline (target n=15-20) at baseline. Quantitative data will be analysed using descriptive statistics, linear mixed models and regression models. Moreover, explorative analyses will be conducted. Qualitative data will be analysed using qualitative content analyses. ETHICS AND DISSEMINATION: The study was approved by the Local Psychological Ethics Committee (LPEK-0281). Our findings will be published in scientific, peer-reviewed journals and presented to clinicians and researchers on conferences. To assure that results will be available to affected patients and families, a lay summary will be written and disseminated using several ways (upload on the homepage of the research group, upload on the homepage of the psychosocial working group in the Society for Paediatric Oncology/Haematology in Germany, sending to relevant patient organisations). TRIAL REGISTRATION NUMBER: DRKS00025289.

[Long-term survival in cancer: definitions, concepts, and design principles of survivorship programs]. / Langzeitüberleben bei Krebs: Definitionen, Konzepte und Gestaltungsprinzipien von Survivorship-Programmen.

Due to improvements in diagnostics and treatment options in hematology and oncology, and thus increasing chances of survival, the number of long-term survivors living with and after a cancer disease in Germany is constantly rising. Although the existing German healthcare system provides multifaceted healthcare offers that are available to long-term survivors, the healthcare situation of this population is not satisfactory. Thus, orientation guides for long-term survivors as well as new and innovative survivorship programs should be developed. This paper provides an overview of the complex of problems, defines relevant concepts, and devises central topics for the development of survivorship programs for long-term cancer survivors.

The impact of cancer on the mental health of patients parenting minor children: A systematic review of quantitative evidence.

OBJECTIVE: To provide an overview of quantitative data on the impact of cancer on the mental health of patients parenting minor children. We focused on mental health outcomes, their levels and prevalence, and applied measurement tools. METHODS: MEDLINE, CINAHL, PsycInfo and Web of Science were searched up to March 2021. We included quantitative studies, published in a peer-reviewed journal and reporting outcomes on the mental health (e.g., depression, anxiety) of cancer patients parenting minor children (≤ 21 years). Study quality was assessed based on the National Institute for Health assessment tool for observational studies. This study is registered on PROSPERO (CRD42019141954). RESULTS: A total of 54 articles based on 36 different studies were included in this systematic review. Studies differ markedly regarding study and sample characteristics (e.g., outcome measures, sample size, parental health status). Depression and anxiety levels range from normal to abnormal, according to applied measurement tools. 7%-83% of parents with cancer have depression scores indicating probable depression and 19%-88% have anxiety scores indicating anxiety disorder. CONCLUSIONS: This review reveals the dimension of mental burden affecting cancer patients parenting minor children. To identify, address and timely treat potentially arising mental health problems and support needs, affected parents should be closely monitored by healthcare professionals and referred to specialized support offers, if necessary. In the context of a comprehensive patient- and family-oriented care, it is highly relevant to integrate mental health (including parental) issues routinely into oncological care by proactively asking for the patient's psychosocial situation and the family status.