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. 2023 Sep 19;30(9):8586-8601.
doi: 10.3390/curroncol30090623.

Prioritizing Solutions and Improving Resources among Young Pediatric Brain Tumor Survivors: Results of an Online Survey

Marco Bonanno  1   2 , Claude Julie Bourque  3 , Lye-Ann Robichaud  2   4 , Ariane Levesque  2   4 , Ariane Lacoste-Julien  2 , Émélie Rondeau  2 , Émilie Dubé  2 , Michelle Leblanc  2 , Marie-Claude Bertrand  1 , Carole Provost  1 , Leandra Desjardins  2   5 , Serge Sultan  2   4
Affiliations

Prioritizing Solutions and Improving Resources among Young Pediatric Brain Tumor Survivors: Results of an Online Survey

Marco Bonanno et al. Curr Oncol. .

Abstract

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.

Keywords: adolescent/young adult; brain tumor; parents; survey; survivorship.

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Conflict of interest statement

The authors declare no conflict of interest.

Figures

Figure 1
Figure 1
Health status—Comparison of reported difficulties in four domains across informant (brain tumor survivors or parents) in 68 survey respondents. Note: Item wording was: What is the impact of these difficulties on daily life?
Figure 2
Figure 2
Perceived difficulties of school attendance in aftercare according to schooling during treatment in survey respondents (n = 65). Note: Item wording was: How would you describe your experience of continuing your studies [of returning to school] after the end of your treatments?
Figure 3
Figure 3
Mean and standard deviation of relevance judgments for each solution. Note: Values for the responses to solutions: 0 (Not at all helpful), 1 (Slightly helpful), 2 (Pretty helpful), 3 (Very helpful).
Figure 4
Figure 4
Suggested key actions to support social integration of pediatric brain tumor survivors.
See this image and copyright information in PMC

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