Assessing Patient-Reported Outcomes in Pediatric Rheumatic Diseases

2022 ◽  
Vol 48 (1) ◽  
pp. 15-29
Christina K. Zigler ◽  
Rachel L. Randell ◽  
Bryce B. Reeve
RMD Open ◽  
2021 ◽  
Vol 7 (1) ◽  
pp. e001566
Yomei Shaw ◽  
Delphine S Courvoisier ◽  
Almut Scherer ◽  
Adrian Ciurea ◽  
Thomas Lehmann ◽  

ObjectiveTo explore the effect of apps measuring patient-reported outcomes (PROs) on patient–provider interaction in the rheumatic diseases in an observational setting.MethodsPatients in the Swiss Clinical Quality Management in Rheumatic Diseases Registry were offered mobile apps (iDialog and COmPASS) to track disease status between rheumatology visits using validated PROs (Rheumatoid Arthritis Disease Activity Index-5 score, Bath Ankylosing Spondylitis Disease Activity Index score, Routine Assessment of Patient Index Data-3 score and Visual Analogue Scale score for pain, disease activity and skin symptoms). We assessed two aspects of patient–provider interaction: shared decision making (SDM) and physician awareness of disease fluctuations. We used logistic regressions to compare outcomes among patients who (1) used an app and discussed app data with their physician (app+discussion group), (2) used an app without discussing the data (app-only group) or (3) did not use any app (non-app users).Results2111 patients were analysed, including 1799 non-app users, 150 app-only users and 162 app+discussion users (43% male; with 902 patients with rheumatoid arthritis, 766 patients with axial spondyloarthritis and 443 patients with psoriatic arthritis). App users were younger than non-app users (mean age of 47 vs 51 years, p<0.001). Compared with non-app users, the app+discussion group rated their rheumatologist more highly in SDM (OR 1.7, 95% CI 1.1 to 2.4) and physician awareness of disease fluctuations (OR 2.0, 95% CI 1.3 to 3.1). This improvement was absent in the app-only group.ConclusionApp users who discussed app data with their rheumatologist reported more favourably on patient–provider interactions than app users who did not and non-app users. Apps measuring PROs may contribute little to patient–provider interactions without integration of app data into care processes.

2020 ◽  
Vol 9 ◽  
pp. 216495612094881
Tobias Romeyke ◽  
Elisabeth Noehammer ◽  
Harald Stummer

Introduction Musculoskeletal disorders may cause chronic pain, which is associated with deterioration in physical well-being, functions, and quality of life. There are worldwide shortfalls in the care that is provided to the affected patients. Holistic, interdisciplinary care is rare. Monomodal therapeutic approaches dominate when health-care resources are scarce. In this study, we test the patient-relevant outcomes of multimodal treatment for rheumatic diseases that are associated with pain and check for remuneration. Methods We performed a retrospective data analysis of an inpatient multimodal treatment. The target parameter was the patient perspective, which we assessed by means of Patient-Reported Outcomes (PRO). We applied the Visual Analogue Scale (mental and physical condition), the Heidelberg Short Early Risk Assessment Questionnaire, the Pain Disability Index, and the pain grading according to Kohlmann/Raspe (N = 375 patients). We also investigated compensation for inpatient treatments with and without multimodal treatments. Moreover, we compared Diagnosis-Related Group remuneration with and without complex treatment. Results After implementing a multimodal treatment, improved mental (mood) status was significantly better (Wilcoxon signed-rank test, P < . 001), despite high levels of pain (Kohlmann/Raspe) reported on admission. Apart from the underlying rheumatic disease, 111 patients also reported chronic back pain, which was improved following the treatment ( t test, P < . 001). Subjective impairments associated with pain were significantly lower at the end of the hospital stay (Wilcoxon signed-rank test, P < . 001). Compensation for inpatient treatments with multimodal treatments increased noticeably in German hospitals in 2016 to 2019, while remunerations for monomodal treatments show mixed results. Conclusion PROs regarding mood, pain, and perceived impairments improved following the multimodal complex treatment. Compensation of hospitals should take into account additional performance requirements of holistic treatments, whereby the promotion and further studies of PROs are recommended.

2021 ◽  
Felix Bongomin ◽  
Maria Sekimpi ◽  
Barbra Natukunda ◽  
Anthony Makhoba ◽  
Mark Kaddumukasa

AbstractPurposeThis study aimed to assess the patient–reported outcomes (PROs) in rheumatic patients attending two tertiary rheumatology clinics in Uganda.MethodsA cross-sectional, clinical audit of patients aged 16 years or older with a confirmed diagnosis of rheumatic disease and receiving disease modifying anti-rheumatic drugs (DMARDs) was conducted between September and December 2020. Health index and overall self-rated health status were assessed using the ED-5D-5L tool. Comparisons for variables was performed using Student’s t-test or Mann-Whitney U for continuous numerical data while categorical data was compared using either Χ2 tests or Fisher’s exact tests as appropriate.ResultsWe enrolled 74 eligible patients: 48 (64.9%) had rheumatoid arthritis (RA), 14 (18.9%) had systemic lupus erythematosus (SLE), and 12 (16.2%) had other autoimmune rheumatic disorders. Majority (n=69, 93.2%) were female with a mean ±SD age of 45 ± 17 years. Fourteen (18.9%) patients were on concomitant herbal medication while using DMARDs and 26 (35.1%) self-reported at least 1 adverse drug reactions to the DMARDS. Any level of problem was reported by 54 (72.5%) participants for mobility, 47 (63.5%) for self-care, 56 (75.6%) for usual activity, 66 (89.1%) for pain and discomfort, and 56 (75.6%) for anxiety/depression. Patients with SLE had higher median health index compared to those other autoimmune rheumatic disorders (p<0.0001). Overall self-rated health status was comparable across clinical diagnoses (p=0.2), but better for patients who received care from private (Nsambya Hospital) compared to public hospital (Mulago Hospital) (65 vs. 50, p=0.009).ConclusionThere is a substantial negative impact of autoimmune rheumatic diseases on quality of life of patients, especially those receiving care from a public facility in Uganda.Clinical SignificanceAdverse drug reactions to DMARDs was reported by more than one-third of the patientsSLE patients have better quality of life compared to patients with other autoimmune rheumatic disease.Concomitant use of herbal medication is common and associated with lower health index and lower overall self-rated health status.Autoimmune rheumatic diseases impose a heavy financial burden on affected patients, over 70% of the study patients required financial support for management of their disease and a high proportion of these patients were not on their DMARD therapy the week prior to their scheduled clinic appoints.

2020 ◽  
Vol 158 (3) ◽  
pp. S107
Edward Barnes ◽  
Millie Long ◽  
Laura Raffals ◽  
Xian Zhang ◽  
Anuj Vyas ◽  

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