2019
DOI: 10.1002/pbc.27880
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Experience of parents receiving results from a quality‐of‐life study in pediatric advanced cancer: A report from the PediQUEST study

Abstract: 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. Nonet… Show more

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“…The terms advanced/ relapsed/refractory cancer, QOL, and pediatric/child in the title or abstract yielded 38 results, of which 10 evaluated QOL in children with advanced cancer. Most of the publications describe the outcomes of the PediQUEST study (Bilodeau et al, 2019;Ilowite et al, 2018;Rosenberg et al, 2016;Ullrich et al, 2018;Wolfe et al, 2014Wolfe et al, , 2015. This was a multisite, prospective, longitudinal study at three urban, academic medical centers evaluating symptom distress and QOL in children with advanced cancer who were >2 years of age.…”
Section: Introductionmentioning
confidence: 99%
“…The terms advanced/ relapsed/refractory cancer, QOL, and pediatric/child in the title or abstract yielded 38 results, of which 10 evaluated QOL in children with advanced cancer. Most of the publications describe the outcomes of the PediQUEST study (Bilodeau et al, 2019;Ilowite et al, 2018;Rosenberg et al, 2016;Ullrich et al, 2018;Wolfe et al, 2014Wolfe et al, , 2015. This was a multisite, prospective, longitudinal study at three urban, academic medical centers evaluating symptom distress and QOL in children with advanced cancer who were >2 years of age.…”
Section: Introductionmentioning
confidence: 99%