BACKGROUND: Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions. OBJECTIVE: To describe patterns of missing data in the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study, and highlight challenges in asking sensitive research questions. DESIGN: Cross-sectional, survey-based study embedded within a randomized controlled trial. SETTING: Three large children's hospitals: Dana-Farber/Boston Children's Cancer and Blood Disorders Center (DF/BCCDC); Children's Hospital of Philadelphia (CHOP); and Seattle Children's Hospital (SCH). MEASUREMENTS: At the time of their child's enrollment, parents completed the Survey about Caring for Children with Cancer (SCCC), including demographics, perceptions of prognosis, treatment goals, quality of life, and psychological distress. RESULTS: Eighty-six of 104 parents completed surveys (83% response). The proportion of missing data varied by question type. While 14 parents (16%) left demographic fields blank, over half (n=48; 56%) declined to answer at least one question about their child's prognosis, especially life expectancy. The presence of missing data was unrelated to the child's diagnosis, time from progression, time to death, or parent distress (p>0.3 for each). Written explanations in survey margins suggested that addressing a child's life expectancy is particularly challenging for parents. CONCLUSIONS AND RELEVANCE: Parents of children with cancer commonly refrain from answering questions about their child's prognosis, however, they may be more likely to address general cure likelihood than explicit life expectancy. Understanding acceptability of sensitive questions in survey-based research will foster higher quality palliative care research.
BACKGROUND: Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions. OBJECTIVE: To describe patterns of missing data in the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study, and highlight challenges in asking sensitive research questions. DESIGN: Cross-sectional, survey-based study embedded within a randomized controlled trial. SETTING: Three large children's hospitals: Dana-Farber/Boston Children's Cancer and Blood Disorders Center (DF/BCCDC); Children's Hospital of Philadelphia (CHOP); and Seattle Children's Hospital (SCH). MEASUREMENTS: At the time of their child's enrollment, parents completed the Survey about Caring for Children with Cancer (SCCC), including demographics, perceptions of prognosis, treatment goals, quality of life, and psychological distress. RESULTS: Eighty-six of 104 parents completed surveys (83% response). The proportion of missing data varied by question type. While 14 parents (16%) left demographic fields blank, over half (n=48; 56%) declined to answer at least one question about their child's prognosis, especially life expectancy. The presence of missing data was unrelated to the child's diagnosis, time from progression, time to death, or parent distress (p>0.3 for each). Written explanations in survey margins suggested that addressing a child's life expectancy is particularly challenging for parents. CONCLUSIONS AND RELEVANCE: Parents of children with cancer commonly refrain from answering questions about their child's prognosis, however, they may be more likely to address general cure likelihood than explicit life expectancy. Understanding acceptability of sensitive questions in survey-based research will foster higher quality palliative care research.
Authors: Ronald C Kessler; Peggy R Barker; Lisa J Colpe; Joan F Epstein; Joseph C Gfroerer; Eva Hiripi; Mary J Howes; Sharon-Lise T Normand; Ronald W Manderscheid; Ellen E Walters; Alan M Zaslavsky Journal: Arch Gen Psychiatry Date: 2003-02
Authors: Joanne Wolfe; Liliana Orellana; E Francis Cook; Christina Ullrich; Tammy Kang; Jeffrey Russell Geyer; Chris Feudtner; Jane C Weeks; Veronica Dussel Journal: J Clin Oncol Date: 2014-03-10 Impact factor: 44.544
Authors: J M Hilden; E J Emanuel; D L Fairclough; M P Link; K M Foley; B C Clarridge; L E Schnipper; R J Mayer Journal: J Clin Oncol Date: 2001-01-01 Impact factor: 44.544
Authors: Giselle K Perez; John M Salsman; Kaitlyn Fladeboe; Anne C Kirchhoff; Elyse R Park; Abby R Rosenberg Journal: Am Soc Clin Oncol Educ Book Date: 2020-03
Authors: Briony F Hudson; Linda Jm Oostendorp; Bridget Candy; Victoria Vickerstaff; Louise Jones; Monica Lakhanpaul; Myra Bluebond-Langner; Paddy Stone Journal: Palliat Med Date: 2016-09-08 Impact factor: 4.762
Authors: Narmeen Mallah; Rubén Rodríguez-Cano; Danielle A Badro; Adolfo Figueiras; Francisco-Javier Gonzalez-Barcala; Bahi Takkouche Journal: Int J Environ Res Public Health Date: 2022-01-08 Impact factor: 3.390