학술논문
MyPref: pilot study of a novel communication and decision-making tool for adolescents and young adults with advanced cancer.
Document Type
Academic Journal
Author
Snaman JM; Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, 450 Brookline Ave, Boston, MA, 02215, USA. Jennifer_Snaman@dfci.harvard.edu.; Department of Pediatrics, Boston Children's Hospital, Boston, MA, USA. Jennifer_Snaman@dfci.harvard.edu.; Helton G; Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, 450 Brookline Ave, Boston, MA, 02215, USA.; Holder RL; Department of Psychology, Virginia Commonwealth University, Richmond, VA, USA.; Wittenberg E; Center for Health Decision Science, Harvard T.H. Chan School of Public Health, Boston, MA, USA.; Revette A; Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, MA, USA.; Tulsky JA; Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, 450 Brookline Ave, Boston, MA, 02215, USA.; Division of Palliative Medicine, Department of Medicine, Brigham and Women's Hospital, Boston, MA, USA.; Baker JN; Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, TN, USA.; Wolfe J; Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, 450 Brookline Ave, Boston, MA, 02215, USA.; Department of Pediatrics, Boston Children's Hospital, Boston, MA, USA.
Source
Publisher: Springer International Country of Publication: Germany NLM ID: 9302957 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1433-7339 (Electronic) Linking ISSN: 09414355 NLM ISO Abbreviation: Support Care Cancer Subsets: MEDLINE
Subject
Language
English
Abstract
Purpose: Adolescents and young adults (AYAs) with cancer report feeling ill-informed about their cancer treatment options. Tools are needed to inform AYAs about treatment choices and amplify the AYA's voice in medical decision-making. We developed MyPref, a conjoint-analysis based tool that quantifies AYA preferences for future cancer treatments.
Methods: We conducted a staged pilot study of MyPref utilizing an intervention mixed methods design. AYAs and their parent or trusted person (PTP) completed MyPref and received a summary report of their preferences for treatment-related factors. Participants later completed the Preparation for Decision Making Scale and MyPref Experience Questionnaire and engaged in semi-structured interviews. Oncologists reported on the perceived accuracy and utility of MyPref. We used a weaving technique for presenting mixed methods data.
Results: Fifteen AYAs with advanced cancer, 7 PTPs, and 12 providers participated in this pilot; 32 (94%) completed all study items. AYA/PTPs stated study participation was useful and believed MyPref allowed for improved understanding of treatment factors and consideration, organization, and visualization of preferences. All providers agreed that MyPref made them think about patient's preferences and 9 (75%) reported they planned to change their approach to discussions about preferences for future treatments.
Conclusion: MyPref is an objective way to estimate AYA and PTP preferences for future treatment characteristics. This novel tool may be a useful way to engage AYAs and PTPs in discussions around preferences for treatment and prepare AYAs for future decision-making. We are currently evaluating this tool longitudinally to determine the impact on actual treatment decisions.
Methods: We conducted a staged pilot study of MyPref utilizing an intervention mixed methods design. AYAs and their parent or trusted person (PTP) completed MyPref and received a summary report of their preferences for treatment-related factors. Participants later completed the Preparation for Decision Making Scale and MyPref Experience Questionnaire and engaged in semi-structured interviews. Oncologists reported on the perceived accuracy and utility of MyPref. We used a weaving technique for presenting mixed methods data.
Results: Fifteen AYAs with advanced cancer, 7 PTPs, and 12 providers participated in this pilot; 32 (94%) completed all study items. AYA/PTPs stated study participation was useful and believed MyPref allowed for improved understanding of treatment factors and consideration, organization, and visualization of preferences. All providers agreed that MyPref made them think about patient's preferences and 9 (75%) reported they planned to change their approach to discussions about preferences for future treatments.
Conclusion: MyPref is an objective way to estimate AYA and PTP preferences for future treatment characteristics. This novel tool may be a useful way to engage AYAs and PTPs in discussions around preferences for treatment and prepare AYAs for future decision-making. We are currently evaluating this tool longitudinally to determine the impact on actual treatment decisions.