Experience of parents receiving results from a quality-of-life study in pediatric advanced cancer: A report from the PediQUEST study

Experience of parents receiving results from a quality-of-life study in pediatric advanced cancer: A report from the PediQUEST study

Bilodeau M; Dussel V; Wolfe J

Pediatric Blood and Cancer

2019

dissemination; pediatric oncology; practice; quality of life; research results

Little is known about the experience of parents receiving results of quality-of-life research in pediatric advanced cancer. The PediQUEST study participants who indicated interest in results during enrollment were mailed summarized findings and the Disseminating Quality-of-Life Research Questionnaire. Respondents (86%,12/14) reported feeling more than "a little" recognized, grateful, or satisfied to receive results. Concurrently, 43% (6/14) endorsed feeling more than "a little" sad, confused, or anxious. Nonetheless, 81% (13/16) prefer to be informed in the future. Although parents experience a spectrum of strong emotions, our findings suggest quality-of-life study results should be shared.

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