Bonanno Marco, Desjardins Leandra, Lugasi Tziona, Carrier Julie, Labonté Nathalie, Sultan Serge, Coltin Hallie, Perrault Sébastien, Provost Carole, Laverdière Caroline, Cloutier Nancy, Saragosti Andrea, Régnier-Trudeau Émilie, Koukoui Benedicte
Hematology-Oncology Unit, Sainte-Justine University Health Center, Montreal, QC, Canada.
Sainte-Justine Research Health Center, Montreal, QC, Canada.
Pilot Feasibility Stud. 2024 Jan 19;10(1):11. doi: 10.1186/s40814-023-01437-5.
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.
背景:儿童脑肿瘤幸存者(PBTS)面临与其诊断和治疗相关的身体、认知和心理社会挑战。因此,成年后的常规随访护理对他们的长期健康和生活质量至关重要。为了成功过渡到成人医疗保健,建议青少年培养过渡准备技能。现有的过渡准备干预措施通常侧重于疾病管理。然而,PBTS也面临社交能力和认知功能挑战的风险。在本文中,我们描述了这项试点研究的方案以及将用于评估首个专门为满足PBTS及其照顾者需求而设计的有针对性的过渡干预工作坊的可行性、可接受性和初步疗效测试的方法。 方法:本研究将采用混合方法评估针对PBTS(14岁及以上)及其父母的二元组(N = 40)的三个1.5小时工作坊。二元组将通过社区儿科癌症组织和一家大型儿科医院的长期随访诊所招募。参与者将在工作坊前后完成一项在线调查,其中包括过渡准备评估问卷(TRAQ)。每个工作坊将涵盖与PBTS过渡准备相关的一个特定主题:疾病管理、社交能力和认知功能。工作坊将遵循相同的结构:主题介绍、转归后幸存者或家长进行讨论、教授两种策略以及工作坊评估。工作坊将由医疗专家和患者伙伴共同主持。可行性和可接受性将通过招募、出勤、留存率和李克特量表进行评估,并通过描述和比较比率进行分析。满意度将使用满意度调查和录音焦点小组进行测量。定性数据将通过主题内容分析进行描述。为了测试本研究的初步疗效,我们将使用配对样本T检验和协方差分析比较工作坊前后的过渡准备技能,以检验工作坊对TRAQ技能的影响。 讨论:该研究的结果将为针对儿童脑肿瘤幸存者的特定需求改进和未来更广泛地实施有针对性的过渡准备工作坊提供信息。
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