Understanding Treatment Burden and Quality of Life Impact of Participating in an Early-Phase Pediatric Oncology Clinical Trial: A Pilot Study
| Autor: | Stacey Crane, Janet S. Carpenter, Joan E. Haase, Beth Stockman, Lori Backus, Li Lin |
|---|---|
| Rok vydání: | 2017 |
| Předmět: |
Adult
Male Parents medicine.medical_specialty Adolescent Patients Phases of clinical research Pilot Projects Pediatrics Article 03 medical and health sciences Young Adult 0302 clinical medicine Quality of life (healthcare) Neoplasms Surveys and Questionnaires Pediatric oncology Medicine Effective treatment Humans 030212 general & internal medicine Longitudinal Studies Young adult Intensive care medicine Child Clinical Trials as Topic Oncology (nursing) business.industry Therapies Investigational Treatment burden Clinical trial 030220 oncology & carcinogenesis Family medicine Child Preschool Quality of Life Female business Early phase Stress Psychological |
| Zdroj: | Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses. 35(1) |
| ISSN: | 1532-8457 |
| Popis: | Purpose: Early-phase clinical trials (EPTs) have led to new, more effective treatment options for children with cancer. Despite the extensive use of EPTs in pediatric oncology, little is known about parent and child experiences during EPT participation. The purposes of this pilot study were to assess the feasibility and preliminary results of having children with cancer and their parents complete measures of treatment burden and quality of life (QOL) concurrent with EPT participation. Methods: In this descriptive, longitudinal, pilot study, parents and children were followed for the first 60 days of an EPT. Feasibility was assessed by participant enrollment and retention and completion of measures. Measures completed included the following: demographic form (completed at baseline); Diary of Trial Experiences to capture treatment burden (completed ongoing); and PedsQL™ Quality of Life Inventories, Cancer Modules, and Family Impact Module (completed at baseline, post–first disease evaluation, and off-study). Data were analyzed using descriptive statistics. Results: Feasibility goals of enrollment, retention, and measure completion were partially met. Preliminary treatment burden and QOL results are provided. Conclusions: While QOL assessments may provide insight into EPT experiences, future studies need to be conducted at multiple sites and enrollment goals must account for participant attrition. |
| Databáze: | OpenAIRE |
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