Background Psychosocial guidelines and standards systematically describe stressors and resources in particularly challenging situations and hence serve as a basis for interventions to achieve defined psychosocial goals. Despite fundamental principles and guidelines for psychosocial methods, the quality of provided care varies considerably depending on setting, provision, and profession. The purpose of the present protocol is to illustrate the development and evaluation of the standardized psychological intervention “My Logbook”, a practical guide accompanying children through all stages of treatment by directly translating current quality standards of psychosocial care into practice. Methods In an evidence-based set-up, using face-to-face discussions and telephone conferences, a multi-professional team of local experts decide on critical disease-related issues, structure, content (information and intervention elements) and design of the quality improvement tool. Via delphi surveys an extended expert team is asked to rate the content, method, and design of all booklets which is concluded by a final agreement by the specialist group for quality assurance of the psychosocial working group in the Society for Pediatric Oncology (PSAPOH). The developed tools are piloted in an international multicenter study to evaluate the patient-reported outcome and feasibility and to integrate practical views of patients, as well as psychosocial and interdisciplinary professionals into the further development of the “My Logbook”. Discussion The iterative development of the “My Logbook” including local and international experts as well as the patient and practical perspective allow for the design of a process-oriented, consensus – and evidence-based tool directly translating the S3-Guideline into clinical practice. Feasibility and applicability are fostered through an iterative process of constant evaluation and adaptation of the tool by international experts and through the clinical experience gathered in the multi-centered pilot study. Furthermore, the systematic evaluation of the tool by patients, psychosocial, and interdisciplinary professionals enables the identification of persisting gaps between evidence-based standards and clinical practice, discrepancies between the various stakeholders’ perspectives as well as regional differences in feasibility, thereby directly linking practice and research. The preliminary results emphasize that psychological support can be standardized, enabling an evaluation and optimization of psychosocial care which future studies need to assess in multicenter clinical randomized controlled trials.

PURPOSE: Many adolescents and young adult (AYAs) childhood cancer survivors face disease- or therapy-related late-effects, which limit their participation in various areas of daily life. AYAs are often left alone in our health care system and many worry about their ability to cope with long-term sequelae and some are even lost to follow up. Therefore, in the present study a targeted aftercare program was developed and evaluated with the goal of facilitating three important “life skills”: (1) self-perception, (2) social interaction and conflict management as well as (3) self-conscious communication of support needs. METHODS: A total of n=13 participants (19.2-30.2 years, mean age: 22.8 years) completed a three-day aftercare seminar, at the end of which each participant wrote a reflection letter (“letter to my future self”), elaborating on observed effects of the seminar, applicability of the given information in daily life and the direct impact of the seminar on their individual circumstances. The reflection letters were analyzed using qualitative content analysis. RESULTS: All target life skills were mentioned in the reflection letters. The participants reported individual benefits from the program especially with respect to self-perception and self-confidence, giving and taking feedback, and acceptance of personal strengths and weaknesses. Moreover, the feeling of “not being alone” was associated with the survivors’ experience of emotional and social support. CONCLUSIONS: This evaluation highlights the potential of a one weekend aftercare seminar to address important life skills that are known to positively influence health behavior in AYAs. The detailed description of the seminar can serve as a basis for making this kind of aftercare accessible for other people in similar circumstances.

OBJECTIVE: School reentry support focusing on providing information to schools and communication between patient/family-hospital-school is defined as a psychosocial standard of care in pediatric oncology (Thompson et al., 2015). This is critical for students with brain tumors (BT) - although it is not yet universally implemented - especially during follow-up, as they are a risk group for late effects. Due to long distances between family-hospital-school, limited personnel capacities and since 2020 Covid-19 restrictions, an online-event (OE) for teachers from external schools was designed, with the aim of: (1) strengthening cooperation, (2) breaking down barriers and (3) increasing level of knowledge. METHODS: 54 teachers participated in each of two OEs. Content was presented by an interdisciplinary team (clinician, clinical/neuropsychologist, social worker, teacher), followed by time for sharing experience. Two months after event 2, participants were asked to complete an evaluation in an anonymous online survey. Supportive and inhibiting factors for successful school reintegration were included in the survey and statistically analyzed. RESULTS: 54% of 23 respondents (70% teaching > 10 years) felt that their training before the event did not prepare them adequately for a teaching setting with seriously ill children (1-3 points on a 10-point Likert-scale). 92% rated their knowledge greater after the event. All interdisciplinary inputs were rated very useful and practical (79-88%: 8-10 points). 38% felt relieved to got to know contact persons. 33% rated teaching a student with BT as fundamentally challenging and felt more confident after the event. CONCLUSION: The results of this pilot project indicate that an online-information-event can increase knowledge and cooperation. Resulting promoting and inhibiting factors for school reintegration will be incorporated into future concept improvement. The findings further highlight the great importance of ongoing support in the form of a reintegration teacher and interdisciplinary input for schools to appropriately support students with BT.

OBJECTIVE: This study investigates the extent of participation barriers in patients with pediatric posterior fossa tumors (PFTs) at long-term follow-up. While most studies focus on pathobiological variables that promote the occurrence of adverse late effects, the present analysis aims to investigate the importance of environmental variables. METHOD: Ten years after tumor diagnosis, 42 patients (mean age: 17 years) treated at our pediatric neuro-oncology unit were assessed for school and social difficulties using a questionnaire developed within the framework of this study. Participation barriers were assumed if patients and/or their parents reported difficulties at school or with peers. The children and adolescents were classified into groups with adequate and limited participation. Potential pathobiological (treatment type, hydrocephalus, tumor recurrence, gender, age at diagnosis, seizures, cerebellar mutism) and environmental risk factors (parental and maternal education, siblings, primary language, discrepancies between personal and environmental values, regular physical activity, private housing) were identified and examined to see if the participation groups differed in the amount of risk factors. RESULTS: Almost a decade after treatment, two thirds of the patients had school and/or social difficulties. Not only pathobiological risk factors (type of treatment, hydrocephalus, tumor recurrence, cerebellar mutism and seizures), but also environmental factors (low maternal education level, siblings, a main language other than German, discrepancies between social and personal values, and irregular physical activity) were associated with limited participation. These variables discriminated significantly between patients with and without participation barriers. CONCLUSION: Participation barriers in patients treated for pediatric PFT are frequent. In addition to pathobiological variables, environmental risk factors also play an important role in limiting school and social participation. This underlines the fact that a sole consideration of pathobiology is not sufficient when examining risk factors for the occurrence of late effects. The adoption of biopsychosocial perspectives in future studies is inevitable.