Background Public and Patient Involvement and Engagement (PPIE) in research is still a poorly understood and infrequently practiced concept, although the literature stresses clear benefits for quality of care and research as well as patient satisfaction and empowerment. Aim The presently described project aimed at using different PPIE methods to evaluate the current state of knowledge about and attitude toward PPIE in research among different stakeholders of pediatric oncology in Europe. Based on the findings a tailored training tool directed toward the different stakeholders will be designed. Methods and Results An interdisciplinary steering group developed a mixed‐method 3‐stage process to (1) investigate the current knowledge and attitudes about PPIE using a Europe‐wide cross‐sectional online survey directed toward health care professionals (n = 134) and the patient group (patients, survivors, family members, …) (n = 168). The results were analyzed quantitatively, focusing on group comparisons (t‐tests, X2 tests). (2) In a live workshop with n = 36 participants (HCPs and patient group) dual moderation teams (HCPs and patient experts) guided the exploration of effective ways for practicing PPIE. Despite classifying PPIE as relevant, both HCPs and patients indicated a low level of knowledge about the concept and terminology (patients: t(334) = −2.82, p = .004; HCPs: t(270) = −2.88, p = .004). While HCPs assumed to already be involving patients in many research areas, this was not perceived by the patient group (X2 (1, N = 304) = 42.70, p < .001). HCPs and patients named similar obstacles for implementing PPIE in research, though numerous creative solutions were found during the workshop (engagement). (3) The outcomes were integrated into a training tool (White‐Board movie). Conclusion Although HCPs and patients acknowledge the benefit of PPIE, the presented results highlight the lack of awareness about the concept, and the need for effective tools for researchers to integrate PPIE throughout the entire research process, thereby contributing to a sustainable change within the scientific culture.

Language barriers have been reported to have a detrimental effect on various outcomes in paediatric care, such as therapy adherence, and may even cause medical treatment errors. To address this issue, we developed a set of 63 cards with which a wide range of specific messages can be conveyed nonverbally in a clinical context. The conceptualization of the tool involved multiple phases. In Study 1, we held a workshop with 11 children and adolescents between 8 and 19 years that had received treatment for oncological conditions to gain an understanding of the specific challenges. In Study 2, we presented a first prototype to 3 children and 14 adults; participants were asked to rate the cards on multiple dimensions. Based on information from the previous trials, we developed a second prototype and asked 10 children and 7 adults to rate the cards on multiple dimensions. In this multidisciplinary approach in addition to our experts of clinical psychology we involved patient advocators and graphic designers in the process to achieve high feasibility and comprehensibility; based on the workshop, expert consensus surveys, data gathered in evaluation, all prototypes and the final card set were developed in close collaboration. Participants had little difficulty interpreting the cards and rated the information content as adequate. Importantly, a majority of participants indicated that they would keep using the tool during their stay at the hospital. Overall, the evaluation implied high acceptance and usability. The final card set is a promising communication tool in clinical paediatric settings with various language barriers. Further research should address how patient outcomes are impacted by using the tool.

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.

OBJECTIVE: The occurrence of neuropsychological late effects in childhood brain tumor patients is well known in literature and practice, as well as the use of neuropsychological testing and therapy procedures. Despite guidelines, actual care is quite heterogeneous and often does not meet the needs due to lack of resources. Therefore, a standardized tool to improve awareness of and access to neuropsychological assessment, but even more treatment was developed. METHODS: The core of this Quality-Improvement project is a multilevel and interdisciplinary approach characterized by iterative processes (PDSA-cycles): (1) conceptualization by interdisciplinary, multicenter teams of experts, (2) consensus in Delphi surveys by medical, nursing and psychosocial experts (N=45) and final approval by the steering group. (3) Pilot phases (N=44): Manageability and acceptance, emotional well-being and the degree of information were recorded using a process-oriented screening. RESULTS: The expert meetings resulted in two booklets ("Look closely - Psychosocial assessment" & "1,2,3 - All about Neuropsychology"): Each booklet offers creative methods with a high prompting character to motivate the child to participate actively in two face-to-face sessions (psychoeducational, work and exercise and reflection section). They enable patients to make themselves experts on these topics with age-appropriate, interactive methods. The Delphi survey revealed a consensus of 69%-93%. Patients using the Psychosocial-assessment booklet showed generally low negative emotions and stable positive emotions, which significantly increased during the second session (Z = 2.156, p = .031). Moreover, positive emotions increase significantly during the second session (Z = 2.805, p = .005). Self-indicated degree of information increases significantly with both booklets (Psychosocial assessment: Z = 3.133, p = .002; Neuropsychology: Z = 2.751, p = .006). CONCLUSION: The results illustrate a positive emotional approach to neuropsychological assessment and treatment. Likewise, the rapid increase in expert knowledge supports access to this specific topic and can be considered a minimum standard.