Reasons for non-completion of health related quality of life evaluations in pediatric acute myeloid leukemia: a report from the Children's Oncology Group.

TitleReasons for non-completion of health related quality of life evaluations in pediatric acute myeloid leukemia: a report from the Children's Oncology Group.
Publication TypeJournal Article
Year of Publication2013
AuthorsJohnston DL, Nagarajan R, Caparas M, Schulte F, Cullen P, Aplenc R, Sung L
JournalPLoS One
Volume8
Issue9
Paginatione74549
Date Published2013
ISSN1932-6203
KeywordsAdolescent, Boronic Acids, Bortezomib, Child, Child, Preschool, Female, Group Processes, Hematopoietic Stem Cell Transplantation, Humans, Leukemia, Myeloid, Acute, Male, Niacinamide, Parents, Phenylurea Compounds, Pyrazines, Quality of Life, Self Report, Surveys and Questionnaires, Survival Analysis, Young Adult
Abstract

BACKGROUND: Health related quality of life (HRQL) assessments during therapy for pediatric cancer are important. The objective of this study was to describe reasons for failure to provide HRQL assessments during a pediatric acute myeloid leukemia (AML) clinical trial.

METHODS: We focused on HRQL assessments embedded in a multicenter pediatric AML clinical trial. The PedsQL 4.0 Generic Core Scales, PedsQL 3.0 Acute Cancer Module, PedsQL Multidimensional Fatigue Scale, and Pediatric Inventory for Parents were obtained from parent/guardian respondents at a maximum of six time points. Children provided self-report optionally. A central study coordinator contacted sites with delinquent HRQL data. Reasons for failure to submit the HRQL assessments were evaluated by three pediatric oncologists and themes were generated using thematic analysis.

RESULTS: There were 906 completed and 1091 potential assessments included in this analysis (83%). The median age of included children was 12.9 years (range 2.0 to 18.9). The five themes for non-completion were: patient too ill; passive or active refusal by respondent; developmental delay; logistical challenges; and poor knowledge of study processes from both the respondent and institutional perspective.

CONCLUSIONS: We identified reasons for non-completion of HRQL assessments during active therapy. This information will facilitate recommendations to improve study processes and future HRQL study designs to maximize response rates.

DOI10.1371/journal.pone.0074549
Alternate JournalPLoS ONE
PubMed ID24040278
PubMed Central IDPMC3765362
Grant ListU10 CA095861 / CA / NCI NIH HHS / United States
U10 CA098543 / CA / NCI NIH HHS / United States
U10 CA98543-08 / CA / NCI NIH HHS / United States