BACKGROUND: Pediatric brain tumor survivors (PBTS) are at risk of physical, cognitive, and psychosocial challenges related to their diagnosis and treatment. Routine follow-up care as adults is therefore essential to their long-term health and quality of life. In order to successfully navigate to adult healthcare, it is recommended that youth develop transition readiness skills. Existing transition readiness interventions often focus on disease management. However, PBTS are also at risk of social competence and cognitive functioning challenges. In this paper, we describe the protocol of this pilot study and the methodology that will be used for the evaluation of the feasibility, acceptability, and preliminary efficacy testing of the first targeted transition intervention workshops specifically designed to meet the needs of PBTS and their caregivers. METHODS: This study will use a mixed method to evaluate three 1 ½-h workshops targeted for dyads (N = 40) of PBTS (14 years or older) and their parents. Dyads will be recruited via a community pediatric cancer organization and the long-term follow-up clinic of a large pediatric hospital. Participants will complete an online survey which includes the Transition Readiness Assessment Questionnaire (TRAQ) before and after the workshops. Each workshop will cover a specific topic related to PBTS transition readiness: disease management, social competence, and cognitive functioning. Workshops will follow the same structure: topic presentation, discussion by a post-transfer survivor or parent, teaching two strategies, and workshop evaluation. Workshops will be co-led by healthcare specialists and patient partners. Feasibility and acceptability will be assessed via recruitment, attendance, retention, and Likert scales, and they will be analyzed by describing and comparing rates. Satisfaction will be measured using satisfaction surveys and audio-recorded focus groups. Qualitative data will be described through thematic content analysis. In order to test the preliminary efficacy of this study, we will compare transition readiness skills pre- and post-workshops using paired samples T test and ANCOVA to examine the impact of workshop on TRAQ skills. DISCUSSION: Results of the study will inform refinement and future broader implementation of targeted transition readiness workshops for the specific needs of pediatric brain tumor survivors.
Pediatric Brain Tumor Survivors (PBTS) often experience social, academic and employment difficulties during aftercare. Despite their needs, they often do not use the services available to them. Following a previous qualitative study, we formulated solutions to help support PBTS return to daily activities after treatment completion. The present study aims to confirm and prioritize these solutions with a larger sample. We used a mixed-methods survey with 68 participants (43 survivors, 25 parents, PBTS' age: 15-39 years). Firstly, we collected information about health condition, and school/work experience in aftercare. Then, we asked participants to prioritize the previously identified solutions using Likert scales and open-ended questions. We used descriptive and inferential statistics to analyze data, and qualitative information to support participants' responses. Participants prioritized the need for evaluation, counseling, and follow-up by health professionals to better understand their post-treatment needs, obtain help to access adapted services, and receive information about resources at school/work. Responses to open-ended questions highlighted major challenges regarding the implementation of professionals' recommendations at school/work and the need for timely interventions. These results will help refine solutions for PBTS and provide key elements for future implementation. Translating these priorities into action will need further work involving professionals and decision makers.
Brain Neoplasms , Child , Humans , Adolescent , Young Adult , Adult , Brain Neoplasms/therapy , Employment , Health Personnel , Parents , Survivors
PURPOSE: Adolescents and young adult survivors of pediatric brain tumors (AYA-PBTS) often experience difficulties with social skills, pursuit of studies and employment. This study explored pediatric long-term survivors' perspective on their post-treatment needs and ways to improve resources and interventions. METHODS: We used an original method of three sequential focus group interviews by adding the perspectives of survivors (15-22 years), parents and health professionals (total N = 22). Participants were recruited using purposive sampling from the long-term follow-up clinic at a Canadian tertiary hospital. We used computer-assisted analysis to draw themes from each group and compare thematic content across groups. RESULTS: Categorization of participants' responses resulted in three domains: personal life, education and work. Participants mentioned the improvement of communication tools to facilitate access to timely information, the organization of counseling to improve employment integration, and tailoring interventions to optimize the return to daily activities in aftercare. Subsequent inductive analysis revealed three overarching trends among groups: multipurpose social networking, AYA-PBTS-specific information websites and transition tools and procedures. CONCLUSION AND IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: This study identified solutions for AYA-PBTS' specific needs in aftercare. This population needs up-to-date post-treatment information and refined outreach procedures. Future research should define and prioritize these suggested solutions.
Brain Neoplasms , Cancer Survivors , Neoplasms , Adolescent , Aftercare/psychology , Brain Neoplasms/psychology , Brain Neoplasms/therapy , Canada , Cancer Survivors/psychology , Child , Humans , Neoplasms/psychology , Survivors , Young Adult
OBJECTIVES: This is a quality assessment of a research design developed for a collaborative study on adolescents and young adults who survived a brain tumor. METHODS: A descriptive and critical mixed methods approach was used to assess the design itself, the quality and information power of the database and the integration of collaborators. Project documentation, field notes and transcripts from focus groups interviews(nâ¯=â¯19) were used for the evaluation, which was based on the Consolidated Criteria for Reporting Qualitative Research. RESULTS: The design proved to be pertinent to resolve methodological stakes in a "fragile field". The mobilisation of collaborators as members of a "Sherpa team" in all phases of the project helped the team create a progressive focus approach well-adapted for data gathering and analysis as well as produce a high-quality database. CONCLUSION: The Nesting Dolls Design including the didactic approach developed along the deployment of the project helped researchers, clinicians and resource patients/parents understand the research procedures and the roles of all collaborators. This fostered a meaningful engagement in the project. PRACTICE IMPLICATIONS: Resources and time for training, communication and supervision are necessary to reach the objectives of collaborative research involving novices and are worth the time and efforts.
Cancer Survivors , Cooperative Behavior , Parents , Physicians , Quality Assurance, Health Care , Brain Neoplasms/therapy , Female , Focus Groups , Health Services Research , Humans , Interviews as Topic , Male , Research Design , Young Adult
Transition from pediatric to adult health care setting is a challenge for young patients because of the psychosocial issues they may present that could hinder their commitment to treatment and medical care. Psychologists play a key role in supporting these patients. They intervene with the most vulnerable ones for whom the current transitional practice does not necessarily meet their specific needs and help them to develop an appropriate level of autonomy despite medical condition. To date, few studies have described their clinical practice in this field. This study aimed to gather in-depth information about the elements that characterize their different roles in transition care. Following a semi-structured interviews with ten pediatric psychologists, we conducted a thematic content analysis to identify common themes among participants. The results indicate that the psychologists' practice focuses on four main aspects: assessment, intervention, education, and liaison. Their recommendations point towards a better organization of health care services and a reflection on the best practices in psychology. These results highlight the specific roles that pediatric psychologists play in the transition process within the health care environment.
Physician's Role , Psychology, Child/methods , Psychology , Transition to Adult Care , Adult , Evaluation Studies as Topic , Female , Humans , Interviews as Topic , Male , Qualitative Research
Recent discoveries highlight the emerging role of estrogens in the initiation and progression of different malignancies through their interaction with stem cell (SC) compartment. Estrogens play a relevant role especially for those tumors bearing a gender disparity in incidence and aggressiveness, as occurs for most thyroid diseases. Although several experimental lines suggest that estrogens promote thyroid cell proliferation and invasion, their precise contribution in SC compartment still remains unclear. This review underlines the interplay between hormones and thyroid function, which could help to complete the puzzle of gender discrepancy in thyroid malignancies. Defining the association between estrogen receptors' status and signaling pathways by which estrogens exert their effects on thyroid cells is a potential tool that provides important insights in pathogenetic mechanisms of thyroid tumors.
