Measuring Goal-Concordant Care: Results and Reflections From Secondary Analysis of a Trial to Improve Serious Illness Communication

Justin J Sanders; Kate Miller; Meghna Desai; Olaf P Geerse; Joanna Paladino; Jane Kavanagh; Joshua R Lakin; Bridget A Neville; Susan D Block; Erik K Fromme; Rachelle Bernacki

doi:10.1016/j.jpainsymman.2020.06.023

Measuring Goal-Concordant Care: Results and Reflections From Secondary Analysis of a Trial to Improve Serious Illness Communication

J Pain Symptom Manage. 2020 Nov;60(5):889-897.e2. doi: 10.1016/j.jpainsymman.2020.06.023. Epub 2020 Jun 26.

Authors

Affiliations

¹ Harvard Medical School, Boston, MA, USA; Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA; Ariadne Labs, Brigham and Women's Hospital and Harvard T. H. Chan School of Public Health, Boston, MA, USA; Department of Medicine, Brigham and Women's Hospital, Boston, MA, USA. Electronic address: jsanders@ariadnelabs.org.
² Ariadne Labs, Brigham and Women's Hospital and Harvard T. H. Chan School of Public Health, Boston, MA, USA.
³ Ariadne Labs, Brigham and Women's Hospital and Harvard T. H. Chan School of Public Health, Boston, MA, USA; Department of Pulmonary Diseases, Academic Medical Center, Amsterdam, The Netherlands.
⁴ Harvard Medical School, Boston, MA, USA; Ariadne Labs, Brigham and Women's Hospital and Harvard T. H. Chan School of Public Health, Boston, MA, USA; Department of Medicine, Brigham and Women's Hospital, Boston, MA, USA.
⁵ Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA; Ariadne Labs, Brigham and Women's Hospital and Harvard T. H. Chan School of Public Health, Boston, MA, USA.
⁶ Harvard Medical School, Boston, MA, USA; Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA; Department of Medicine, Brigham and Women's Hospital, Boston, MA, USA.
⁷ Harvard Medical School, Boston, MA, USA; Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA; Ariadne Labs, Brigham and Women's Hospital and Harvard T. H. Chan School of Public Health, Boston, MA, USA; Department of Medicine, Brigham and Women's Hospital, Boston, MA, USA; Department of Psychiatry, Brigham and Women's Hospital, Boston, MA, USA.
⁸ Harvard Medical School, Boston, MA, USA; Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA; Ariadne Labs, Brigham and Women's Hospital and Harvard T. H. Chan School of Public Health, Boston, MA, USA; Department of Medicine, Brigham and Women's Hospital, Boston, MA, USA.

PMID: 32599148
DOI: 10.1016/j.jpainsymman.2020.06.023

Abstract

Context: Many consider goal-concordant care (GCC) to be the most important of advance care planning and palliative care. Researchers face significant challenges in attempting to measure this outcome. We conducted a randomized controlled trial to assess the effects of a system-level intervention to improve serious illness communication on GCC and other outcomes.

Objectives: To describe our measurement approach to GCC, present findings from a post-hoc analysis of trial data, and discuss lessons learned about measuring GCC.

Methods: Using trial data collected to measure GCC, we analyzed ratings and rankings from a nonvalidated survey of patient priorities in the setting of advanced cancer, the Life Priorities Scale, and compared outcomes with correlative measures.

Results: Participants commonly rated several predetermined and literature-derived priorities as important but did so in ways that were commonly incongruent with rankings. Ratings were frequently stable over time; rankings less so. Rankings are more likely to help assess the degree to which care is goal concordant but may be best augmented by corollary measures that signal achievement of a given priority.

Conclusion: Measuring GCC remains a fundamental challenge to palliative care researchers. Ratings attest to the fact that many things matter to patients; however, rankings can better determine what matters most. Insights gained from our experience may guide future research aiming to use this outcome to assess the effect of intervention to improve serious illness care.

Keywords: Goal-concordant care; clinical trial; serious illness communication; study methods.

Publication types

Randomized Controlled Trial
Research Support, Non-U.S. Gov't

MeSH terms

Advance Care Planning*
Communication
Goals
Humans
Neoplasms* / therapy
Palliative Care

Grants and funding

U2C NR014637/NR/NINR NIH HHS/United States