Deena R Levine1, Erik Liederbach2, Liza-Marie Johnson1, Erica C Kaye1, Holly Spraker-Perlman1, Belinda Mandrell3, Michele Pritchard3, April Sykes4, Zhaohua Lu4, Dave Wendler5, Justin N Baker1. 1. Division of Quality-of-life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee. 2. Department of Oncology, University of Illinois at Chicago College of Medicine, Chicago, Illinois. 3. Division of Nursing Research, Department of Pediatric Medicine, St. Jude Children's Research Hospital, Memphis, Tennessee. 4. Department of Biostatistics, St. Jude Children's Research Hospital, Memphis, Tennessee. 5. Department of Bioethics, National Institute of Health, Bethesda, Maryland.
Abstract
BACKGROUND: High-quality oncology care is marked by skillful communication, yet little is known about patient and family communication perceptions or content preferences. Our study sought to elicit pediatric oncology patient and parent perceptions of early cancer communication to establish whether informational needs were met and identify opportunities for enhanced communication throughout cancer care. METHOD: An original survey instrument was developed, pretested, and administered to 129 patients, age 10-18 years, and their parents at 3 cancer centers between 2011 and 2015. Statistical analysis of survey items about perceived communication, related associations, and patient/parent concordance was performed. RESULTS: A greater percentage of participants reported "a lot" of discussion about the physical impact of cancer (patients, 58.1% [n = 75]; parents, 69.8% [n = 90]) compared with impact on quality of life (QOL) (patients, 44.2% [n = 57]; parents, 55.8% [n = 72]) or emotional impact (patients, 31.8% [n = 41]; parents, 43.4% [n = 56]). One fifth of patients (20.9% [n = 27]) reported they had no up-front discussion about the emotional impact of cancer treatment. Parents indicated a desire for increased discussion regarding impact on family life (27.9% [n = 36]), long-term QOL (27.9% [n = 36]), and daily activities (20.2% [n = 26]). Patients more frequently than parents indicated a desire for increased physician/patient discussion around the impact on daily activities (patients, 40.3% [n = 52]; parents, 21.7% [n = 28]; P < .001), long-term QOL (patients, 34.9% [n = 45]; parents, 16.3% [n = 21]; P < .001), pain management (patients, 23.3% [n = 30]; parents, 7% [n = 9]; P < .001), physical symptom management (patients, 24% [n = 31]; parents, 7.8% [n = 10]; P < .001), short-term QOL (patients, 23.3% [n = 30]; parents, 9.3% [n = 12]; P = .001), and curative potential (patients, 21.7% [n = 28]; parents, 8.5% [n = 11]; P = .002, P values calculated using McNemar's test). CONCLUSION: Oncologists may not be meeting the informational needs of many patients and some parents/caregivers. Communication could be enhanced through increased direct physician-patient communication, as well as proactive discussion of emotional symptoms and impact of cancer on QOL.
BACKGROUND: High-quality oncology care is marked by skillful communication, yet little is known about patient and family communication perceptions or content preferences. Our study sought to elicit pediatric oncology patient and parent perceptions of early cancer communication to establish whether informational needs were met and identify opportunities for enhanced communication throughout cancer care. METHOD: An original survey instrument was developed, pretested, and administered to 129 patients, age 10-18 years, and their parents at 3 cancer centers between 2011 and 2015. Statistical analysis of survey items about perceived communication, related associations, and patient/parent concordance was performed. RESULTS: A greater percentage of participants reported "a lot" of discussion about the physical impact of cancer (patients, 58.1% [n = 75]; parents, 69.8% [n = 90]) compared with impact on quality of life (QOL) (patients, 44.2% [n = 57]; parents, 55.8% [n = 72]) or emotional impact (patients, 31.8% [n = 41]; parents, 43.4% [n = 56]). One fifth of patients (20.9% [n = 27]) reported they had no up-front discussion about the emotional impact of cancer treatment. Parents indicated a desire for increased discussion regarding impact on family life (27.9% [n = 36]), long-term QOL (27.9% [n = 36]), and daily activities (20.2% [n = 26]). Patients more frequently than parents indicated a desire for increased physician/patient discussion around the impact on daily activities (patients, 40.3% [n = 52]; parents, 21.7% [n = 28]; P < .001), long-term QOL (patients, 34.9% [n = 45]; parents, 16.3% [n = 21]; P < .001), pain management (patients, 23.3% [n = 30]; parents, 7% [n = 9]; P < .001), physical symptom management (patients, 24% [n = 31]; parents, 7.8% [n = 10]; P < .001), short-term QOL (patients, 23.3% [n = 30]; parents, 9.3% [n = 12]; P = .001), and curative potential (patients, 21.7% [n = 28]; parents, 8.5% [n = 11]; P = .002, P values calculated using McNemar's test). CONCLUSION: Oncologists may not be meeting the informational needs of many patients and some parents/caregivers. Communication could be enhanced through increased direct physician-patient communication, as well as proactive discussion of emotional symptoms and impact of cancer on QOL.
Authors: Rebecca J W Cline; Felicity W K Harper; Louis A Penner; Amy M Peterson; Jeffrey W Taub; Terrance L Albrecht Journal: Soc Sci Med Date: 2006-05-02 Impact factor: 4.634
Authors: Angela M Feraco; Sarah R Brand; Jennifer W Mack; Jennifer C Kesselheim; Susan D Block; Joanne Wolfe Journal: Pediatr Blood Cancer Date: 2016-01-29 Impact factor: 3.167
Authors: Ronald M Epstein; Paul R Duberstein; Joshua J Fenton; Kevin Fiscella; Michael Hoerger; Daniel J Tancredi; Guibo Xing; Robert Gramling; Supriya Mohile; Peter Franks; Paul Kaesberg; Sandy Plumb; Camille S Cipri; Richard L Street; Cleveland G Shields; Anthony L Back; Phyllis Butow; Adam Walczak; Martin Tattersall; Alison Venuti; Peter Sullivan; Mark Robinson; Beth Hoh; Linda Lewis; Richard L Kravitz Journal: JAMA Oncol Date: 2017-01-01 Impact factor: 31.777
Authors: Nicholas P DeGroote; Kristen E Allen; Erin E Falk; Cristina Velozzi-Averhoff; Karen Wasilewski-Masker; Khaliah Johnson; Katharine E Brock Journal: Support Care Cancer Date: 2021-08-19 Impact factor: 3.603
Authors: Katie A Greenzang; Colleen A Kelly; Hasan Al-Sayegh; Clement Ma; Jennifer W Mack Journal: Pediatr Blood Cancer Date: 2021-09-14 Impact factor: 3.167
Authors: Tyler Lee; Julie Cui; Hinette Rosario; Didja Hilmara; Kate Samuelson; Emery C Lin; Victoria A Miller; Henry C Lin Journal: BMC Health Serv Res Date: 2020-05-11 Impact factor: 2.655