Changes in the ability to participate in and satisfaction with social roles and activities in patients in outpatient rehabilitation

Abstract

Background: One of the main aims of rehabilitation is to improve participation. Patient-Reported Outcomes Measurement Information System (PROMIS®) item banks 'Ability to Participate in Social roles and Activities, (PROMIS-APS) and 'Satisfaction with Social Roles and Activities' (PROMIS-SPS) are promising options to measure participation, but the literature on PROMIS measures of (satisfaction with) participation across diagnoses in rehabilitation is limited. Therefore, the objective of this study was to describe levels of and changes in participation, as assessed with the PROMIS-APS and the PROMIS-SPS short forms, of patients in outpatient rehabilitation. Methods: This study had quantitative, observational design with assessments at admission and discharge. Consecutive patients treated between April and August 2018 receiving outpatient multidisciplinary rehabilitation were the population of this study. The following diagnosis categories were included: brain injury (e.g. stroke), spinal cord and nerve injury, neuromuscular disorder (e.g. lateral sclerosis), amputation, musculoskeletal condition (e.g. osteoarthritis) or heart or lung disease (e.g. myocardial infarction, chronic obstructive pulmonary disease). The main patient-reported outcomes (PRO) of this study were the short form of the PROMIS-APS (8 items, Dutch general population reference score 50.6 [SD 9.5]), and PROMIS-SPS (8 items, Dutch general population reference score 47.5 [SD 8.3]. Results: Of the 1279 patients invited, 777 (61%) completed the online forms at admission. Of those, 329 patients were invited at discharge, with 209 (64%) completing the forms. The mean (SD) T-scores of the PROMIS-APS and PROMIS-SPS were lower at admission (42.7 [SD 7.4]; (41.4 [SD 7.7]) and discharge (43.6 [SD 7.2]; (43.7 [SD 7.8]) than the Dutch general population. The change scores of the PROMIS-APS and PROMIS-SPS were 1.2 (95% CI 0.4-1.9; p = 0.004; effect size 0.16), and 2.4 (95% CI 1.6-3.2; p < 0.0001; effect size 0.31), respectively. In all diagnostic subgroups with > 30 paired measurements statistically significant improvements of PROMIS-APS, PROMIS-SPS or both were seen. Conclusions: Patients undergoing outpatient rehabilitation had, both at admission and discharge, considerably lower PROMIS-APS and PROMIS-SPS T-scores short forms than the general Dutch population, and showed small T-score improvements at discharge.

Ability to Participate in Social Activities of Rheumatoid Arthritis Patients Compared with Other Rheumatic Diseases: A Cross-Sectional Observational Study

“…We evaluated the ability to participate in social activities (PROMIS-APS) in patients with three rheumatic diseases and its association with other social variables and clinical factors. We found that, despite the epidemiological and clinical differences between the three diseases, abnormalities in patients’ ability to participate in social activities were very similar, and the mean scores of the PROMIS-APS in these three rheumatic diseases were much lower than those of the reference population and patients with other musculoskeletal conditions [ 29 ] Likewise, we did not observe differences in the PROMIS score for social activities in the different settings, except for mobility, which was less affected in patients with SLE. The greater impairment in mobility observed in patients with RA and SpA could be associated with older age and more frequent arthritis than in patients with SLE.…”

“…On the other hand, we found that improved PROMIS scores for social satisfaction, mobility, company, older age, and lower frequency of depression were independently associated with the ability to participate in social activities (PROMIS-APS). While these aspects have not been evaluated in this type of patient, other studies on patients with musculoskeletal and neuromuscular involvement revealed that participation, as assessed using the PROMIS questionnaire, is associated with better quality of life, greater social satisfaction, and less frequent depression [ 4 , 29 ]. As for age, we found that older patients were more able to participate in social activities.…”

Randomized controlled trial evaluating feedback to community-based therapists based on patient reports of trust and respect.

“…A higher score indicates greater satisfaction with social roles and activities. Evidence for the validity and sensitivity to change of versions of the scale has been reported (Tamminga et al, 2020; Terwee et al, 2019). The scale was developed for individuals 18 or above in age.…”

Aging with long-term physical disability: Cohort analysis of survey sample in the U.S.

“…Our social activity measures are drawn from the PROMIS (Patient Reported Outcomes Measurement Information System) measurement bank and have been evaluated across multiple populations. [17][18][19] AwD research study samples are frequently composed of persons who identify their race as White and who have a specific diagnosis such as spinal cord injury, multiple sclerosis, or polio, 20 which represent some of the common conditions found among persons AwD, but often do not include other conditions that cause disability. Guidelines from the United States federal funding agencies including the National Institutes of Health and the National Institute on Disability, Independent Living, and Rehabilitation Research 21 have required researchers to improve the racial and ethnic diversity of their study samples, given the substantial differences in health and wellness outcomes for non-White individuals in the United States.…”