Protocol for evaluation of the feasibility and preliminary efficacy of a targeted transition readiness workshop intervention for pediatric brain tumor survivors
Abstract 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 navigat...
| Main Authors: | , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2024-01-01
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| Series: | Pilot and Feasibility Studies |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s40814-023-01437-5 |
| _version_ | 1797350114384150528 |
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| author | Marco Bonanno Leandra Desjardins Tziona Lugasi Julie Carrier Nathalie Labonté Serge Sultan Hallie Coltin Sébastien Perrault Carole Provost Caroline Laverdière Nancy Cloutier Andrea Saragosti Émilie Régnier-Trudeau Benedicte Koukoui |
| author_facet | Marco Bonanno Leandra Desjardins Tziona Lugasi Julie Carrier Nathalie Labonté Serge Sultan Hallie Coltin Sébastien Perrault Carole Provost Caroline Laverdière Nancy Cloutier Andrea Saragosti Émilie Régnier-Trudeau Benedicte Koukoui |
| author_sort | Marco Bonanno |
| collection | DOAJ |
| description | Abstract 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. |
| first_indexed | 2024-03-08T12:40:09Z |
| format | Article |
| id | doaj.art-2f0a6bf38eec47da8c08d1c0f8a57ca2 |
| institution | Directory Open Access Journal |
| issn | 2055-5784 |
| language | English |
| last_indexed | 2024-03-08T12:40:09Z |
| publishDate | 2024-01-01 |
| publisher | BMC |
| record_format | Article |
| series | Pilot and Feasibility Studies |
| spelling | doaj.art-2f0a6bf38eec47da8c08d1c0f8a57ca22024-01-21T12:11:00ZengBMCPilot and Feasibility Studies2055-57842024-01-0110111010.1186/s40814-023-01437-5Protocol for evaluation of the feasibility and preliminary efficacy of a targeted transition readiness workshop intervention for pediatric brain tumor survivorsMarco Bonanno0Leandra Desjardins1Tziona Lugasi2Julie Carrier3Nathalie Labonté4Serge Sultan5Hallie Coltin6Sébastien Perrault7Carole Provost8Caroline Laverdière9Nancy Cloutier10Andrea Saragosti11Émilie Régnier-Trudeau12Benedicte Koukoui13Hematology-Oncology Unit, Sainte-Justine University Health CenterSainte-Justine Research Health CenterHematology-Oncology Unit, Sainte-Justine University Health CenterDepartment of Psychology, Université de MontréalÉcole Des Petits-ExpCrateurs, Marie-Victorin School BoardSainte-Justine Research Health CenterHematology-Oncology Unit, Sainte-Justine University Health CenterHematology-Oncology Unit, Sainte-Justine University Health CenterHematology-Oncology Unit, Sainte-Justine University Health CenterHematology-Oncology Unit, Sainte-Justine University Health CenterHematology-Oncology Unit, Sainte-Justine University Health CenterHematology-Oncology Unit, Sainte-Justine University Health CenterHematology-Oncology Unit, Sainte-Justine University Health CenterHematology-Oncology Unit, Sainte-Justine University Health CenterAbstract 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.https://doi.org/10.1186/s40814-023-01437-5Pediatric brain tumor survivorsImplementation toolPilot projectFeasibility studiesTransitionPatient-centered intervention |
| spellingShingle | Marco Bonanno Leandra Desjardins Tziona Lugasi Julie Carrier Nathalie Labonté Serge Sultan Hallie Coltin Sébastien Perrault Carole Provost Caroline Laverdière Nancy Cloutier Andrea Saragosti Émilie Régnier-Trudeau Benedicte Koukoui Protocol for evaluation of the feasibility and preliminary efficacy of a targeted transition readiness workshop intervention for pediatric brain tumor survivors Pilot and Feasibility Studies Pediatric brain tumor survivors Implementation tool Pilot project Feasibility studies Transition Patient-centered intervention |
| title | Protocol for evaluation of the feasibility and preliminary efficacy of a targeted transition readiness workshop intervention for pediatric brain tumor survivors |
| title_full | Protocol for evaluation of the feasibility and preliminary efficacy of a targeted transition readiness workshop intervention for pediatric brain tumor survivors |
| title_fullStr | Protocol for evaluation of the feasibility and preliminary efficacy of a targeted transition readiness workshop intervention for pediatric brain tumor survivors |
| title_full_unstemmed | Protocol for evaluation of the feasibility and preliminary efficacy of a targeted transition readiness workshop intervention for pediatric brain tumor survivors |
| title_short | Protocol for evaluation of the feasibility and preliminary efficacy of a targeted transition readiness workshop intervention for pediatric brain tumor survivors |
| title_sort | protocol for evaluation of the feasibility and preliminary efficacy of a targeted transition readiness workshop intervention for pediatric brain tumor survivors |
| topic | Pediatric brain tumor survivors Implementation tool Pilot project Feasibility studies Transition Patient-centered intervention |
| url | https://doi.org/10.1186/s40814-023-01437-5 |
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