Series: Clinical Validity of PROMIS Measures Across Several Chronic ConditionsOriginal ArticleThe PROMIS satisfaction with social participation measures demonstrated responsiveness in diverse clinical populations
Introduction
Although social health has long been recognized as an integral component of health [1], it has received limited attention in clinical practice and medical research. The World Health Organization's International Classification of Functioning, Disability and Health (ICF) has helped to highlight social participation as both a determinant of health [2], [3], [4] and as a treatment outcome valued by patients, providers, and policy makers [5]. Participation in social roles and discretionary activities is included in the ICFs core sets for chronic heart failure (CHF), chronic obstructive pulmonary disease (COPD), back pain, and depression [6], [7], [8]. The importance of social participation in chronic medical conditions such as these is well documented [9], [10], [11], [12], [13], [14]. There is, however, a need for standardized measures of social health and participation that are applicable to a broad range of conditions and clinical settings [15]. The initiative titled Patient-Reported Outcomes Measurement Information System (PROMIS®) developed measures of social role performance and participation that are intended to be universally relevant, rather than disease specific. That is, the measures are assumed relevant across many clinical populations and levels of severity, allowing for broad applicability and comparability across populations and diseases.
The PROMIS Social Health workgroup developed social function measures using a mixed-methods approach that included cognitive interviews, focus groups, and large-scale cross-sectional testing with a general population sample [16], [17], [18], [19], [20]. Social function is defined as involvement in, and satisfaction with, one's usual roles in life's situations and activities. These roles may exist in marital relationships, family responsibilities, work/school responsibilities, and social activities. Item response theory methods were used to create computer-adaptive tests (CATs) and fixed-length short forms [21], [22], [23], [24]. This manuscript describes the longitudinal evaluation of two PROMIS social function CAT measures (satisfaction with participation in social roles and satisfaction with participation in discretionary social activities) in five English-speaking clinical samples.
Section snippets
Participant recruitment and assessment procedures
Five patient samples were included in four studies (COPD, CHF, back pain, and depression) that assessed social function. Participant recruitment procedures are described in the overview article (Cook et al., this volume) (Cook et al., 2015). All participants received some type of treatment for their condition; specifically, COPD and depression participants received treatment appropriate for their level of disease, CHF participants received a heart transplant, and back pain participants received
Participant characteristics
A total of 599 people participated in the clinical studies that assessed social function. Participants were diverse in terms of gender, age, and marital status (see Table 2 in the overview article; Cook et al., this issue) (Cook et al., submitted data). Most participants were non-Hispanic whites and had some college education. Most participants had moderate to severe health limitations. Study dropout was 4% for participants in the COPD and depression groups, 16% for CHF, and 21% for pain.
Discussion
PROMIS includes several measures of social function and social relationships that have undergone rigorous psychometric assessment and evolution, demonstrated strong properties, and are publically available in English and Spanish for use in research and clinical practice (www.assessmentcenter.net) [19], [34]. The present study expanded validation efforts by conducting longitudinal evaluations of two PROMIS social function measures (satisfaction with participation in social roles and satisfaction
Acknowledgments
NIH Science Officers on this project have included Deborah Ader, PhD, Vanessa Ameen, MD (deceased), Susan Czajkowski, PhD, Basil Eldadah, MD, PhD, Lawrence Fine, MD, DrPH, Lawrence Fox, MD, PhD, Lynne Haverkos, MD, MPH, Thomas Hilton, PhD, Laura Lee Johnson, PhD, Michael Kozak, PhD, Peter Lyster, PhD, Donald Mattison, MD, Claudia Moy, PhD, Louis Quatrano, PhD, Bryce Reeve, PhD, William Riley, PhD, Peter Scheidt, MD, Ashley Wilder Smith, PhD, MPH, Susana Serrate-Sztein, MD, William Phillip
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Conflict of interest: D.A.D. is an unpaid member of the board of directors of the PROMIS Health. D.C. is an unpaid member of the board of directors and officer of the PROMIS Health Organization. All other authors declare no conflict of interest.
Funding: PROMIS was funded with cooperative agreements from the National Institutes of Health (NIH) Common Fund Initiative (Northwestern University, PI: David Cella, PhD, U54AR057951, U01AR052177; Northwestern University, PI: Richard C. Gershon, PhD, U54AR057943; American Institutes for Research, PI: Susan (San) D. Keller, PhD, U54AR057926; State University of New York, Stony Brook, PIs: Joan E. Broderick, PhD, and Arthur A. Stone, PhD, U01AR057948, U01AR052170; University of Washington, Seattle, PIs: Heidi M. Crane, MD, MPH, Paul K. Crane, MD, MPH, and Donald L. Patrick, PhD, U01AR057954; University of Washington, Seattle, PI: Dagmar Amtmann, PhD, U01AR052171; University of North Carolina, Chapel Hill, PI: Harry A. Guess, MD, PhD (deceased), Darren A. DeWalt, MD, MPH, U01AR052181; Children's Hospital of Philadelphia, PI: Christopher B. Forrest, MD, PhD, U01AR057956; Stanford University, PI: James F. Fries, MD, U01AR052158; Boston University, PIs: Alan Jette, PT, PhD, Stephen M. Haley, PhD (deceased), and David Scott Tulsky, PhD (University of Michigan, Ann Arbor), U01AR057929; University of California, Los Angeles, PIs: Dinesh Khanna, MD (University of Michigan, Ann Arbor) and Brennan Spiegel, MD, MSHS, U01AR057936; University of Pittsburgh, PI: Paul A. Pilkonis, PhD, U01AR052155; Georgetown University, PIs: Carol. M. Moinpour, PhD (Fred Hutchinson Cancer Research Center, Seattle) and Arnold L. Potosky, PhD, U01AR057971; Children's Hospital Medical Center, Cincinnati, PI: Esi M. Morgan DeWitt, MD, MSCE, U01AR057940; University of Maryland, Baltimore, PI: Lisa M. Shulman, MD, U01AR057967; and Duke University, PI: Kevin P. Weinfurt, PhD, U01AR052186). Each coauthor of this article was supported by one or more of these grants.
The contents of this article use data developed under PROMIS. The contents do not necessarily represent an endorsement by the US Federal Government or PROMIS. See www.nihpromis.org for additional information on the PROMIS initiative.