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Pediatric cancer is one of the most burdensome chronic diseases, necessitating a variety of severe medical interventions. As a result, the disease and its treatment cause numerous acute and long-term medical, psychological, and socioeconomic strains for young patients and their families. Therefore, psychosocial care using evidence-based interventions (EBIs) before, during, and after medical treatments is essential to ensure that patients receive adequate information and to minimize the adverse emotional and psychosocial impacts such as insecurity, fear, and shame. The present study reports the first promising results of applying cancer-specific psychosocial methods developed in the quality improvement project "My Logbook." The four assessed tools are specifically designed to adequately prepare pediatric cancer patients for surgery, chemotherapy, radiotherapy, and stem cell transplantation. Self and proxy ratings were used to assess the patients' subjective knowledge and emotional well-being before and after each intervention session. The results showed that patient-centered interventions using various creative and developmentally adapted methodologies (e.g., psychoeducation, crafting, games) have the potential to effectively enhance patient health literacy (V = 120.5, p < .001, r = 0.33) and well-being as manifested in more positive (slope = 0.121, p = .016) and less negative (slope = - 0.350, p < .001) or neutral emotions (slope = - 0.202, p = .002). These findings highlight the importance of developing and implementing psychosocial tools in pediatric oncology to prevent psychological overload and negative emotions and to increase subjective control beliefs, autonomy, and empowerment. Moreover, the effective application and systematic evaluation of evidence-based psychosocial tools can facilitate the establishment of standardized guidelines for psychosocial care in pediatric oncology. Thereby, the final goal is to ensure the quality of care and to use education to increase the quality of life for all pediatric cancer patients.Trial registration: ClinicalTrials.gov Identifier: NCT04474678 (July 17, 2020).
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OBJECTIVE: The present report describes the results of four delphi surveys conducted within the quality improvement project "My Logbook" which aims to translate evidence-based standards for psychosocial care in pediatric oncology into a practical consensus-based tool. METHODS: In four consecutive delphi surveys a total of n=153 international, multi-disciplinary experts rated the content, method, and design of the different booklets of "My Logbook" which a local expert group had conceptualized. After each survey, the feedback was incorporated, and the changes were evaluated in a final consensus vote by the quality assurance panel of the PSAPOH. RESULTS: While some surveys led to a review on a page level, most booklets as a whole reached the consensus-level of approval. Over the course of the surveys, any revisions and comments were incorporated in the booklets, and approval rates increased steadily. DISCUSSION: The delphi surveys ensured the integration of multi-disciplinary, international expertise, uncovering issues such as language barriers and the need for a user manual that would not have been evident in first line . The incorporation of the input led to a continuous improvement of the tool, reflected in steadily increasing acceptance rates in the consecutive survey rounds. CONCLUSION: The incorporation of the expert input as well as the additional development of a user manual resulted in a final version of the "My Logbook" apt for the interdisciplinary application in pediatric oncology in the entire DACH-region.
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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.
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Neoplasias , Reabilitação Psiquiátrica , Criança , Humanos , Melhoria de Qualidade , Projetos Piloto , Consenso , Neoplasias/terapiaRESUMO
To provide an effective alternative to sedation during MRI examinations in pediatric cancer and NF1 patients, the aims of the present study were to (1) exploratively evaluate a behavioral MRI training program, to (2) investigate potential moderators, as well as to (3) assess the patients' well-being over the course of the intervention. A total of n = 87 patients of the neuro-oncology unit (mean age: 6.83 years) underwent a two-step MRI preparation program, including training inside the scanner, and were recorded using a process-oriented screening. In addition to the retrospective analysis of all data, a subset of 17 patients were also analyzed prospectively. Overall, 80% of the children receiving MRI preparation underwent the MRI scan without sedation, making the success rate almost five times higher than that of a group of 18 children that opted out of the training program. Memory, attentional difficulties, and hyperactivity were significant neuropsychological moderators for successful scanning. The training was associated with favorable psychological well-being. These findings suggest that our MRI preparation could present an alternative to sedation of young patients undergoing MRI examinations as well as a promising tool for improving patients' treatment-related well-being.
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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, and (3) self-conscious communication of support needs. A total of n = 13 participants (19.2-30.2 years, mean age 22.8 years) completed a 3-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. 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. 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.
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Sobreviventes de Câncer , Neoplasias , Adolescente , Humanos , Criança , Adulto Jovem , Adulto , Sobreviventes de Câncer/psicologia , Neoplasias/terapia , Neoplasias/psicologia , Sistemas de Apoio Psicossocial , Áustria , Sobreviventes/psicologia , Assistência ao Convalescente/psicologiaRESUMO
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.