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.

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.

Patient experiences of interprofessional collaboration and intersectoral communication in rare disease healthcare in Germany - a mixed-methods study.

BACKGROUND: Rare diseases are often complex, chronic and many of them life-shortening. In Germany, healthcare for rare diseases is organized in expert centers for rare diseases. Most patients additionally have regional general practicioners and specialists for basic medical care. Thus, collaboration and information exchange between sectors is highly relevant. Our study focuses on the patient and caregiver perspective on intersectoral and interdisciplinary care between local healthcare professionals (HCPs) and centers for rare diseases in Germany. The aims were (1) to investigate patients' and caregivers' general experience of healthcare, (2) to analyse patients' and caregivers' perception of collaboration and cooperation between local healthcare professionals and expert centers for rare diseases and (3) to investigate patients' and caregivers' satisfaction with healthcare in the expert centers for rare diseases. RESULTS: In total 299 individuals of whom 176 were patients and 123 were caregivers to pediatric patients participated in a survey using a questionnaire comprising several instruments and constructs. Fifty participants were additionally interviewed using a semistructured guideline. Most patients reported to receive written information about their care, have a contact person for medical issues and experienced interdisciplinary exchange within the centers for rare diseases. Patients and caregivers in our sample were mainly satisfied with the healthcare in the centers for rare diseases. The qualitative interviews showed a rather mixed picture including experiences of uncoordinated care, low engagement and communication difficulties between professionals of different sectors. Patients reported several factors that influenced the organization and quality of healthcare e.g. engagement and health literacy in patients or engagement of HCPs. CONCLUSIONS: Our findings indicate the high relevance of transferring affected patients to specialized care as fast as possible to provide best medical treatment and increase patient satisfaction. Intersectoral collaboration should exceed written information exchange and should unburden patients of being and feeling responsible for communication between sectors and specialists. Results indicate a lack of inclusion of psychosocial aspects in routine care, which suggests opportunities for necessary improvements.

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.

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.

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.

Child-centredness in paediatric magnetic resonance imaging: Information needs and experiences of children requiring magnetic resonance imaging and their parents.

BACKGROUND: Assessing patient experiences is essential to provide high quality health-care. The objectives of this study were to examine (1) child- and parent-reported information status before magnetic resonance imaging (MRI), (2) experiences during an MRI and (3) needs and suggestions for improvement. METHODS: Children (≥8 years) and parents answered questionnaires (before and after planned MRI examination) covering mental condition, information status/needs, preparation for MRI, and potential stressors. Before MRI n = 132 accompanying parents and n = 91 children provided data (after MRI: n = 93 parents; n = 71 children). The mean age of the children undergoing MRI was 10.5 years (SD = 4.9). Children had on average seven previous MRIs before our survey (Range: 1-33). Twenty-three percent of the children were to be sedated during the examination. RESULTS: Parents and children reported low to medium levels of burden, high knowledge and high information status. For the children, most stressful factors during the MRI were boredom and noise. Main information resources were the radiologists or self-searches. Parents of children with their first MRI reported higher anxiety levels in their children and stated a worse information status (main information source: self-searches/internet). Parents reported needs regarding organization of the MRI (e.g., reduction of waiting times), age-appropriate information and communication during the MRI. Children wished to visit the MRI room prior the examination (44%) and to get more information (44%). Children suggested improvements such as better sound quality of films/music, more transparency about the procedure, being in contact with a parent and shorter examinations. CONCLUSION: Results suggest that preparation, information provision and care is perceived positively by families. Needs and suggestions for improvement were, for example, higher transparency of procedures, better communication and reduction of stress. Findings indicate that preparation in routine-care should follow an individualized child-focused approach, should focus on families without previous MRIs and should address children with high anxiety levels.

Effectiveness and feasibility of an interprofessional training program to improve patient safety-A cluster-randomized controlled pilot study.

Introduction: Interprofessional healthcare teams are important actors in improving patient safety. To train these teams, an interprofessional training program (IPTP) with two interventions (eLearning and blended learning) was developed to cover key areas of patient safety using innovative adult learning methods. The aims of this study were to pilot test IPTP regarding its effectiveness and feasibility. The trial was registered with DRKS-ID: DRKS00012818. Methods: The design of our study included both a pilot investigation of the effectiveness of the two interventions (eLearning and blended learning) and testing their feasibility (effectiveness-implementation hybrid design). For testing the effectiveness, a multi-center cluster-randomized controlled study with a three-arm design [intervention group 1 (IG1): eLearning vs. intervention group 2 (IG2)]: blended learning (eLearning plus interprofessional in-person training) vs. waiting control group (WCG) and three data collection periods (pre-intervention, 12 weeks post-intervention, and 24 weeks follow-up) was conducted in 39 hospital wards. Linear mixed models were used for the data analysis. The feasibility of IPTP was examined in 10 hospital wards (IG1) and in nine hospital wards (IG2) using questionnaires (formative evaluation) and problem-focused interviews with 10% of the participants in the two intervention groups. The collected data were analyzed in a descriptive exploratory manner. Results: Pilot testing of the effectiveness of the two interventions (eLearning and blended learning) showed no consistent differences between groups or a clear pattern in the different outcomes (safety-related behaviors in the fields of teamwork, error management, patient involvement, and subjectively perceived patient safety). Feasibility checks of the interventions showed that participants used eLearning for knowledge activation and self-reflection. However, there were many barriers to participating in eLearning, for example, lack of time or access to computers at the ward. With regard to in-person training, participants stated that the training content sensitized them to patient-safety-related issues in their everyday work, and that awareness of patient safety increased. Discussion: Although the interventions were judged to be feasible, no consistent effects were observed. A possible explanation is that the duration of training and the recurrence rate may have been insufficient. Another conceivable explanation would be that participants became more sensitive to patient safety-critical situations due to their knowledge acquired through the IPTP; therefore, their assessment post-intervention was more critical than before. In addition, the participants reported high pre-measurement outcomes. Future studies should examine the evidence of the intervention within a confirmatory study after adapting it based on the results obtained.

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.

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.

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.

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.

[Healthcare for people with rare diseases: recommendations for successful intersectoral collaboration]. / Versorgung von Menschen mit Seltenen Erkrankungen: Empfehlungen für eine gelungene intersektorale Zusammenarbeit.

BACKGROUND: Rare diseases often present complex symptoms and usually require intersectoral collaboration during diagnostic and therapeutic processes involving inpatient and outpatient care. Hence, smooth interfaces with little loss of information and cooperation are essential to provide appropriate care. Our study, the project ESE-Best, aims at developing recommendations for the design and implementation of intersectoral care for patients with rare diseases using various survey instruments. METHODS: Using quantitative and qualitative methods, multiple perspectives (primary physicians, expert centers of rare diseases, patients, parents) were assessed. Additionally, two expert workshops were conducted. RESULTS: Based on findings from our data, we formulated 28 recommendations in the following areas: (1) networking between primary physicians and expert centers, (2) intersections within the expert centers, (3) awareness of rare diseases, structures of expert centers and responsibilities, (4) collaboration between expert centers and patients/caregivers, and (5) further recommendations. CONCLUSION: Our recommendations provide a basis for a working management of intersectoral care in rare diseases. As the recommendations are based on broad data including multiple perspectives, external validity and feasibility can be assumed. Still, time and human resources as well as organizational structures in single centers or practices and regional structures need to be taken into account as they may impact intersectoral care.

Representing Sex and Gender Information in Biomedical Research.

In medicine and biomedical research, sex- and gender-related aspects are ubiquitous. If not considered adequately, a lower quality of research data can be expected together with a lower generalizability of study results with real-world settings. From a translational perspective, a lack of sex- and gender-sensitivity in acquired data can have negative implications for diagnosis, treatment (outcome and side effects), and risk prediction. To establish improved recognition and reward settings we set out to develop a pilot of systemic sex and gender awareness in a German medical faculty, with actions such as implementing equality in routine clinical practice and research, as well as in scientific practice (incl. science education). We believe that the change of culture will have a positive effect on research outcomes, lead to a rethinking in the scientific domain, foster sex- and gender-related clinical studies, and influence the design of good scientific practices.

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.