Abstract
Objective
The aim was to describe the percentage of patients with axial spondyloarthritis (axSpA), rheumatoid arthritis (RA), and systemic lupus erythematosus (SLE) in the Rheumatology Informatics System for Effectiveness (RISE) Registry who received a rehabilitation referral.
Methods
Data were derived from RISE, an electronic health record enabled registry of approximately 30% of the US clinical rheumatology workforce. Practices were eligible if there was at least one patient record indicating a referral to rehabilitation (physical or occupational therapy) in any plan of care. Patients from eligible practices were included if they were ≥18 years old, had two or more qualifying International Classification of Disease (ICD) codes for axSpA, RA, or SLE at least 30 days apart, and had at least one visit in 2022. The primary outcome was percentage of patients with at least one rehabilitation referral documented in 2022 and at any time, reported by patient and practice characteristics.
Results
A total of 20,574 adult patients with axSpA, 198,517 with RA, and 37,060 with SLE were identified. In 2022, 4.4%, 2.7%, and 2.6% of patients with axSpA, RA, and SLE were referred to rehabilitation at least once, whereas 11.8%, 9.2%, and 8.7% of these patients received a referral to rehabilitation at any time, respectively. Among practices, 52%, 61%, and 60% of practices referred <1% of patients with axSpA, RA, and SLE to rehabilitation in 2022.
Conclusion
Rehabilitation referral from rheumatology practices was low, with considerable variation across practices. The strength of recommendations for rehabilitation in treatment guidelines seem to have limited impact on referral practices.
INTRODUCTION
Functional deficits, like difficulty with household tasks, work, and walking, are prevalent in adults with rheumatic disease (RD) and contribute to less community participation and lower quality of life compared to peers. 1 For example, in one sample of adults with rheumatoid arthritis (RA), over 60% reported mild‐to‐severe functional limitation. 2 In another sample, 22% of adults reported work disability with 3 years after diagnosis, and over 50% reported work disability over 25 years after diagnosis. 3 Functional limitations are often not resolved with medical management alone. 4 Rehabilitation services, including physical therapy (PT) and occupational therapy (OT), are specifically indicated to improve physical function and optimize participation in life activities. Yet, rehabilitation use among adults with RD in the US is low and lags behind the expected need. 2 , 5
SIGNIFICANCE & INNOVATIONS.
This analysis used a novel approach to extract rehabilitation referrals from the unstructured plan of care notes across a variety of electronic medical record vendors in the Rheumatology Informatics System for Effectiveness (RISE) Registry, expanding potential uses of RISE to study and improve rheumatology care.
Rehabilitation services were infrequently integrated in rheumatologic care, evidenced by only 4.4% of patients with axial spondyloarthritis (axSpA), 2.7% of patients with rheumatoid arthritis (RA), and 2.6% of patients with systemic lupus erythematosus (SLE) receiving a referral in 2022 and by limited variation in referral percentages across demographic groups.
Most (52%–61%) practices referred less than 1% of patients with axSpA, RA, and SLE in 2022, though there was some variation by geographic location (Midwest and South > Northeast and West) and practice type (multispecialty groups > solo, single‐specialty, or academic practice).
This study identifies a discrepancy between American College of Rheumatology treatment guidelines strongly recommending physical therapy referral for patients with axSpA and only 11.8% of patients having a rehabilitation referral in the plan of care.
Rehabilitation services are recommended in the integrative care of adults across many RDs to various extents. 6 , 7 , 8 We chose to investigate three commonly treated RDs, axial spondyloarthritis (axSpA), RA, and systemic lupus erythematosus (SLE), because of the variation of strength and specificity for rehabilitation use from American College of Rheumatology (ACR) guidelines. For adults with active and stable ankylosing spondylitis, PT services were explicitly and strongly recommended in the ACR 2015 and 2019 guidelines; the recommendation was extended to active nonradiographic axSpA in the 2019 guidelines. 7 , 8 For adults with RA, the recommendation for rehabilitation in routine care has changed over time. In RA management guidelines from 1996, PT was among the recommended interventions to be initiated following diagnosis and subsequent reactivation of disease. 9 In the 2008 ACR treatment guidelines for RA, PT and OT were discussed as expected nonmedical therapies: “The ACR recommendations focus on the use of nonbiologic and biologic therapies for the treatment of RA on the background of optimal and appropriate use of nonmedical therapies (e.g., physical and occupational therapies).” 10 In 2022, ACR published the first guideline that included an evidence review for PT and OT use resulting in a conditional recommendation for use of PT and OT for patients with RA, emphasizing shared decision‐making between the clinician and patient. 6 Some RDs have clinical guidelines with limited or no mention of rehabilitation. For example, SLE treatment guidelines do not directly address rehabilitation, though a recently published international consensus‐based recommendation for physical activity for patients with SLE suggested supervision from a physical therapist or qualified exercise professional would better personalize exercise programs to individual needs. 11
Referrals from trusted health care providers are a common way patients with functional needs access rehabilitation services. Although prior research consistently demonstrates low rehabilitation use among adults with RD, the extent to which rheumatologists refer adults to rehabilitation services has not been previously reported. A referral from a rheumatology provider reflects the intention to use rehabilitation to address a rheumatology‐related functional limitation. The purpose of this analysis was to describe the percentage of patients with axSpA, RA, and SLE in the Rheumatology Informatics System for Effectiveness (RISE) Registry who received a rehabilitation referral. Given the variability in guideline recommendations for rehabilitation across different RDs, we hypothesized rehabilitation referrals would occur more often among RDs with stronger recommendations for rehabilitation (eg, highest percentage among patients with axSpA followed by RA and lower percentage among patients with SLE).
PATIENTS AND METHODS
Study design
This was a cross‐sectional retrospective analysis of the RISE Registry, a national electronic health record (EHR)–enabled registry that collects data from patients seen at participating rheumatology practices. As of September 2023, RISE held validated data from 1,333 providers in 242 practices, representing approximately 30% of the US clinical rheumatology workforce. The analyses were conducted in 2024, and at the time, the most recent complete year of data was 2022.
Study size and practice selection
Practices in RISE were eligible for this study if they had at least one patient record indicating a referral to rehabilitation in the “plan of care” for any patient seen in that practice to ensure that referrals would be captured in the data available in RISE.
Patient selection
Patients from eligible practices were included if they were at least 18 years old by 2022 and had at least one visit to a RISE practice in 2022. Individuals with axSpA, RA, and SLE were identified if they had at least two visits with the respective International Classification of Disease, Tenth Revision, (ICD‐10) codes at least 30 days apart (axSpA: 720.0, M45.x, M46.8; RA: 714.x, M05.x, M06.x but not M06.4; SLE: 710.0, M32.1x‐9x excluding M32.0 “drug induced lupus”). This approach has been previously validated. 12 , 13 , 14 This study was approved by the Western Institutional Review Board (IRB) and the University of California San Francisco IRB (21‐34133) and was considered exempt from University of North Carolina at Chapel Hill IRB approval (24‐3063).
Descriptive characteristics
Demographic characteristics of the included patients were extracted from EHR data: age, sex, insurance type, and race and ethnicity. To quantify time in RISE, we calculate the number of years between the first available visit in RISE and the end of 2022 per patient. Practice characteristics contributing data to RISE were obtained and included size (ie, number of providers), practice type (academic health system, multispecialty group, single‐specialty group, or solo), and geographic region of the US.
Outcomes
The primary outcome was rehabilitation referral (yes/no) in 2022. A secondary outcome was rehabilitation referral at any time in the RISE Registry, varying by practice (when the practice joined the RISE Registry and how much data was extracted) and by patient (when the patient received care from the practice). A rehabilitation referral was defined as a referral to either PT or OT in the “plan of care” portion of the visit documentation and was captured by searching for a combination of key terms within the plan of care documentation. Key terms included “physical therapy referral” OR “occupational therapy referral” OR “PT referral” OR “OT referral.” Records were excluded if the plan of care documentation included phrases indicating that PT or OT was held off, only being considered, discussed, recommended without action, previously attempted, or declined by the patient.
Statistical analysis
We calculated the percentage of the sample who received a referral to rehabilitation in 2022 or ever in RISE within each disease category and within each practice. We stratified the analysis to describe rehabilitation referral patterns across patient and practice characteristics. We calculated the median and interquartile range for the percentage of patients referred to rehabilitation services for patients with axSpA, RA, and SLE per practice to describe the variability across practices. Practices with less than 20 patients were excluded from the practice‐level analysis.
RESULTS
A total of 197 practices and 256,154 patients were included in this analysis (Supplemental Figure 1). Most patients with RA and SLE were female (77% and 91%, respectively), whereas about half were female in the axSpA group (54.2%). Most patients with RA and axSpA were non‐Hispanic White (67% and 68%, respectively), whereas approximately half of patients with SLE were non‐Hispanic White (52.5%). Most patients had Medicare or private insurance. The median time with data available in RISE was 4.0 (interquartile range 1.3–7.4), 5.0 (interquartile range 2.1–8.2), and 5.1 (interquartile range 2.0–8.3) years for the patients with axSpA, RA, and SLE, respectively.
In 2022, 4.4% of patients with axSpA, 2.7% of patients with RA, and 2.6% of patients with SLE were referred to rehabilitation at least once. When the window was expanded to referral at any time, 11.8% of patients with axSpA, 9.2% of patients with RA, and 8.7% of patients with SLE ever received a referral to rehabilitation in the RISE Registry. The percentage of patients with a rehabilitation referral was consistently low across demographic characteristics. Across age, sex, race and ethnicity, and insurance groups, 1.2% to 8.2% were referred in axSpA, 0.6% to 4.1% in RA, and 0.6% to 3.9% in SLE. Referrals in the expanded “any time” window were generally two to four times higher compared to 2022 only (Table 1).
Table 1.
Percentage of patients with axSpA, RA, and SLE who received rehabilitation referrals in the RISE registry, in total and stratified by demographic and insurance characteristics*
| axSpA | RA | SLE | |||||||
|---|---|---|---|---|---|---|---|---|---|
| Total sample, N | At least 1 referral in 2022, n (%) | At least 1 referral EVER, n (%) | Total sample, N | At least 1 referral in 2022, n (%) | At least 1 referral EVER, n (%) | Total sample, N | At least 1 referral in 2022, n (%) | At least 1 referral EVER, n (%) | |
| Total | 20,574 | 895 (4.4) | 2,436 (11.8) | 198,517 | 5,310 (2.7) | 18,188 (9.2) | 37,060 | 961 (2.6) | 3,214 (8.7) |
| Age, y | |||||||||
| <30 | 1,623 | 77 (4.7) | 169 (10.4) | 3,416 | 83 (2.4) | 201 (5.9) | 2,208 | 37 (1.7) | 92 (4.2) |
| 30–39 | 2,866 | 93 (3.2) | 278 (9.7) | 8,571 | 166 (1.9) | 555 (6.5) | 4,469 | 85 (1.9) | 260 (5.8) |
| 40–49 | 4,210 | 172 (4.1) | 459 (10.9) | 19,791 | 473 (2.4) | 1,472 (7.4) | 6,800 | 159 (2.3) | 506 (7.4) |
| 50–59 | 4,800 | 193 (4.0) | 576 (12.0) | 38,471 | 983 (2.6) | 3,215 (8.4) | 8,604 | 244 (2.8) | 860 (10) |
| 60–69 | 4,165 | 194 (4.7) | 544 (13.1) | 56,713 | 1,481 (2.6) | 4,984 (8.8) | 8,270 | 248 (3.0) | 803 (9.7) |
| 70–79 | 2,370 | 134 (5.7) | 321 (13.5) | 50,076 | 1,452 (2.9) | 5,226 (10.4) | 5,150 | 145 (2.8) | 536 (10.4) |
| ≥80 | 540 | 32 (5.9) | 89 (16.5) | 21,479 | 672 (3.1) | 2,535 (11.8) | 1,559 | 43 (2.8) | 157 (10.1) |
| Sex | |||||||||
| Female | 11,148 | 595 (5.3) | 1,525 (13.7) | 153,389 | 4,535 (3.0) | 15,433 (10.1) | 33,813 | 910 (2.7) | 3,046 (9.0) |
| Male | 9,426 | 300 (3.2) | 911 (9.7) | 45,128 | 775 (1.7) | 2,755 (6.1) | 3,247 | 51 (1.6) | 168 (5.2) |
| Race and ethnicity | |||||||||
| African American | 782 | 42 (5.4) | 113 (14.5) | 15,558 | 505 (3.2) | 1,814 (11.7) | 6,734 | 209 (3.1) | 706 (10.5) |
| Asian | 409 | 17 (4.2) | 52 (12.7) | 3,342 | 87 (2.6) | 327 (9.8) | 1,019 | 12 (1.2) | 72 (7.1) |
| Hispanic | 1,244 | 83 (6.7) | 183 (14.7) | 10,436 | 306 (2.9) | 1,012 (9.7) | 2,788 | 48 (1.7) | 198 (7.1) |
| Other/mixed | 130 | 5 (3.8) | 15 (11.5) | 1,155 | 29 (2.5) | 95 (8.2) | 227 | 5 (2.2) | 16 (7) |
| Unknown | 4,129 | 223 (5.4) | 468 (11.3) | 34,826 | 1,123 (3.2) | 3,026 (8.7) | 6,829 | 226 (3.3) | 542 (7.9) |
| White | 13,880 | 525 (3.8) | 1,605 (11.6) | 133,200 | 3,260 (2.4) | 11,914 (8.9) | 19,463 | 461 (2.4) | 1,680 (8.6) |
| Insurance | |||||||||
| Medicaid | 979 | 80 (8.2) | 169 (17.3) | 9,789 | 402 (4.1) | 1,346 (13.8) | 2,608 | 102 (3.9) | 311 (11.9) |
| Medicare <65 y | 1,432 | 73 (5.1) | 193 (13.5) | 12,786 | 397 (3.1) | 1,388 (10.9) | 3,757 | 132 (3.5) | 431 (11.5) |
| Medicare ≥65 y | 3,610 | 191 (5.3) | 536 (14.8) | 79,355 | 2,527 (3.2) | 8,997 (11.3) | 8,110 | 260 (3.2) | 901 (11.1) |
| Other | 673 | 25 (3.7) | 89 (13.2) | 4,968 | 74 (1.5) | 289 (5.8) | 1,172 | 24 (2) | 93 (7.9) |
| Private | 11,550 | 498 (4.3) | 1,363 (11.8) | 75,276 | 1,816 (2.4) | 5,836 (7.8) | 17,715 | 422 (2.4) | 1,408 (7.9) |
| Unknown | 2,330 | 28 (1.2) | 86 (3.7) | 16,343 | 94 (0.6) | 332 (2) | 3,698 | 21 (0.6) | 70 (1.9) |
There were 3 patients with axSpA with unknown sex who were not listed above. axSpA, axial spondyloarthritis; RA, rheumatoid arthritis; RISE, Rheumatology Informatics System for Effectiveness; SLE, systemic lupus erythematosus.
Most practices in RISE referred few to no patients for rehabilitation in 2022. Specifically, 52%, 61%, and 60% of practices referred <1% of patients with axSpA, RA, and SLE to rehabilitation, respectively. In the specific disease categories, the highest proportion of patients referred from a single practice was 26.5%, 19.3%, and 24.3% for axSpA, RA, and SLE, respectively, and generally practices that referred more for one disease also referred more for the other disease (Figure 1). Practices with a larger number of providers had a higher median percentage of referrals (Supplemental Table 1). Multispecialty groups had a higher median percentage of referrals compared to solo, single‐specialty, or academic practices. The South had higher referrals for RA and SLE, whereas the South and Midwest locations had higher referrals for axSpA compared to the Northeast and West.
Figure 1.
The following figure presents the percentage of patients who were referred to rehabilitation in 2022 per practice. The practices are presented in the same order on the x‐axis for each panel. The x‐axis was ordered by the rank of the percentage of patients with RA, as RA had the most practices included (n = 197). Practices with less than 20 patients per disease were excluded. axSp, axial spondyloarthritis; RA, rheumatoid arthritis; SLE, systemic lupus erythematosus.
DISCUSSION
The aim of this study was to summarize rehabilitation referrals for patients with axSpA, RA, and SLE that occurred in 2022 and at any time in a large national dataset. The percentage of the sample who received a rehabilitation referral was low across all conditions, but marginally higher among adults with axSpA (4.4%) compared to RA (2.7%) and SLE (2.6%). Although rehabilitation referral at any time was higher across conditions (8.7%–11.8%), the low referrals overall indicate minimal integration of rehabilitation into rheumatology care.
Rehabilitation referrals did not align with the strength of ACR treatment guidelines for rehabilitation for axSpA, RA, and SLE. These three conditions were chosen in part because of the variation in the strength of recommendations for rehabilitation among their respective ACR guidelines, with axSpA having the strongest recommendations 7 , 8 and SLE having no explicit recommendation. We hypothesized that the percentage of rehabilitation referrals would correspond accordingly. However, the rehabilitation referral percentages were low across all conditions. In axSpA, the recommendations for PT in treatment guidelines have been consistently strong, yet only 4.4% of patients had a rehabilitation referral in their plan of care in 2022 and only 11.8% had ever received a referral. 7 , 8 In RA, rehabilitation recommendations have been included in ACR treatment guidelines spanning over three decades (1996, 2008, 2022); however, there was a notable gap (2008–2022) when rehabilitation was not in the scope of guideline updates. 6 , 9 , 10 , 15 In SLE, no ACR guidelines explicitly recommend referrals to rehabilitation; thus, it was surprising that the referral percentages were comparable to axSpA and RA. Taken together, these findings suggest that referral patterns were not driven solely by guideline strength and remain underused given the persistent functional challenges faced by many patients.
Although most practices rarely referred patients to rehabilitation, there was considerable variation across practices. This variation was consistent across diseases, such that practices that referred more patients to rehabilitation for one disease also tended to refer more patients in others (Figure 1). Rheumatology clinicians face time constraints during visits and must balance priorities like disease activity assessment, medication monitoring and adjustments, procedures, and comorbidity management. At an individual level, barriers to referral may include time, competing patient or clinician priorities, and uncertainty of the role or availability of rehabilitation for rheumatologic conditions. However, the observed patterns in the analysis suggest that structural, cultural, and/or environmental differences among practices may influence referral behaviors beyond individual clinician decision‐making. Future work should examine how multilevel (eg, individual, practice, system) characteristics and processes shape referral behaviors and how these can be optimized to expand access to rehabilitation.
Lack of referral represents a cognitive barrier to rehabilitation access—patients cannot access a service they are unaware of or do not understand as relevant to managing the challenges of their RD. Interestingly, patients with RD may use rehabilitation more often than they receive a referral from rheumatology. In an analysis of Medicare enrollees with RA, approximately 10% used PT per year from 2013 to 2016, whereas 3.2% of older adults with RA and Medicare coverage in this analysis had a rehabilitation referral in 2022. 5 Although these metrics cannot be directly compared due to cohort and analytic differences, it is important to acknowledge that patients may receive referrals from other providers (eg, primary care or orthopedic providers) for other needs (eg, postsurgical) or directly access PT without a referral. This discrepancy raises the possibility that rheumatologists may not view rehabilitation referrals as part of their role in helping patients manage functional needs. Yet, patients with RDs often trust their rheumatologist to guide their care related to their RD. 6 Further, they value learning about options that complement medical management, including rehabilitation services, especially early in the disease course. 6 Future work should explore strategies to support rheumatology clinicians in providing timely referrals to rehabilitation and other integrative services and when this guidance is most beneficial to a patient's quality of life.
A strength is that the RISE dataset is a national EHR‐based network of rheumatology practices—approximately 30% of the US rheumatology workforce. Extracting rehabilitation referrals from the plan of care field in the RISE Registry was a novel approach to identifying rehabilitation referrals across EHRs. The approach was feasible, as eligible data were available for 90% of participating practices. This dataset provides valuable insight into how rheumatologists may consider rehabilitation referrals as a part of a patient's care plan. This study does have limitations. Rehabilitation referrals were extracted from the plan of care documentation, and it is possible that some orders for PT and OT were not captured due to variation across EHRs. To mitigate this potential limitation, we did require each included practice to have at least one referral documented in the plan of care. To have greater accuracy in quantifying rehabilitation referrals, it would be useful to repeat this study in an administrative dataset in which PT or OT referrals are discrete data. It is also possible that rehabilitation was not discussed in the plan of care if the patient was in rehabilitation from self‐referral or referral from another provider (eg, primary care). The COVID pandemic affected care delivery and may have reduced referral rates, although by 2022, this was likely less of an effect given the availability of vaccination. Although established approaches were used to identify patient disease categories using ICD codes, this may also be a source of misclassification bias. 12 , 13 , 14
In conclusion, we observed that overall rehabilitation referrals from rheumatology practices were low and variable across practices despite known functional needs of many adults with RD. This study adds novel insight to understanding rehabilitation access and use among adults with RDs, as it characterized referrals, a proxy for plan of care intentions, rather than rehabilitation use. The strength of recommendations for rehabilitation in treatment guidelines seem to have limited impact on referral practices. Further study is needed to determine barriers and facilitators to rehabilitation referral and the broader integration of rehabilitation into routine rheumatology care.
AUTHOR CONTRIBUTIONS
All authors contributed to at least one of the following manuscript preparation roles: conceptualization AND/OR methodology, software, investigation, formal analysis, data curation, visualization, and validation AND drafting or reviewing/editing the final draft. As corresponding author, Dr Thoma confirms that all authors have provided the final approval of the version to be published and takes responsibility for the affirmations regarding article submission (eg, not under consideration by another journal), the integrity of the data presented, and the statements regarding compliance with institutional review board/Declaration of Helsinki requirements.
Supporting information
Disclosure Form:
Supplemental Figure 1 STROBE Diagram of Practice and Patient Selection
Supplemental Table 1 Median and IQR of the percentage of patients referred to rehabilitation per practice, in total and stratified by practice characteristics
ACKNOWLEDGMENTS
The data presented here was supported by the American College of Rheumatology's Rheumatology Information System for Effectiveness (RISE) Registry. However, the views expressed represent those of the authors and do not necessary represent the views of the American College of Rheumatology. Generative artificial intelligence technology (ChatGPT) was used to proofread the final version of the discussion for grammar and clarity in sentence structure.
The funding sources had no role in study design, collection or interpretation of data, or the decision to submit.
Supported by National Institute for Arthritis and Musculoskeletal and Skin Diseases, NIH (P30‐AR‐072580 and L30‐AR‐084776 to Dr Allenzara, K23‐AR‐079037 to Dr Thoma, L30‐AR‐074207 to Dr Thoma) and pilot funding from the Department of Health Sciences at the University of North Carolina at Chapel Hill.
1Division of Rheumatology, Allergy and Immunology, Department of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina; 2Thurston Arthritis Research Center, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina; 3Department of Medicine, Division of Rheumatology, University of California San Francisco, San Francisco, California; 4Department of Medicine, Division of Clinical Informatics and Digital Transformation, University of California San Francisco, San Francisco, California; 5San Francisco Veterans Affairs Medical Center, San Francisco, California; 6Department of Physical Therapy, School of Health and Rehabilitation Science, University of Pittsburgh, Pittsburgh, Pennsylvania; 7Division of Physical Therapy, Department of Health Sciences, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.
Additional supplementary information cited in this article can be found online in the Supporting Information section (https://acrjournals.onlinelibrary.wiley.com/doi/10.1002/acr2.70143).
Author disclosures are available at https://onlinelibrary.wiley.com/doi/10.1002/acr2.70143.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Disclosure Form:
Supplemental Figure 1 STROBE Diagram of Practice and Patient Selection
Supplemental Table 1 Median and IQR of the percentage of patients referred to rehabilitation per practice, in total and stratified by practice characteristics