The use of routinely collected patient-reported outcome measures in rheumatoid arthritis

Hiligsmann, Mickaël; Rademacher, Susanne; Kaal, K. Julia; Bansback, Nick; Harrison, Mark

doi:10.1016/j.semarthrit.2018.03.006

Cited by 22 publications

(20 citation statements)

References 25 publications

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“…The patient-relevant domains for inflammatory arthritis are pain, fatigue, activity limitation, overall emotional and physical health impact, work/school/housework ability and productivity [ 10 , 13 ]. Although these domains are to a certain extent addressed in previous literature, they have never been addressed all at once [ 9 , 13 , 15 , 16 ].…”

Section: Introductionmentioning

confidence: 99%

The impact of different (rheumatoid) arthritis phenotypes on patients’ lives

et al. 2020

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Objectives To compare patient-relevant outcome (PRO) domains between three arthritis phenotypes: namely undifferentiated arthritis (UA), autoantibody-negative (RA-) and positive rheumatoid arthritis (RA+), at diagnosis, after 2 years and over time. Methods All UA(n = 130), RA-(n = 176) and RA + (n=331) patients from the tREACH trial, a stratified single-blinded trial with a treat-to-target approach, were used. PRO comparisons between phenotypes at baseline and after 2 years were performed with ANOVA, while a linear mixed model compared them over time. Effect sizes were weighted up against the MCIDs for each PRO. Results RA- had a higher disease burden compared to RA+ and UA. At baseline and after 2 years, RA- patients had more functional impairment and a poorer Physical Component Score (PCS) compared to the other phenotypes, while they only scored worse for general health and morning stiffness duration at baseline. The MCIDs were exceeded at baseline, except for functional ability between RA+ and UA, while after 2 years only the MCID of PCS was exceeded between RA- compared to UA and RA. After 2 years the PROs of all phenotypes improved, but PROs measuring functioning were still worse compared to the general population even when patients had low disease activity. Conclusion RA- had the highest disease burden of all phenotypes. Although most patients have low disease activity after treatment, all clinical phenotypes still have a similar significant impact on patients’ lives, which is mainly physical. Therefore, it is important to assess and address PROs in daily practice, because of persistent disease burden despite low disease activity. Trial registration ISRCTN26791028.

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Section: Introductionmentioning

confidence: 99%

The impact of different (rheumatoid) arthritis phenotypes on patients’ lives

et al. 2020

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“…The use of PROs allows patient-centered, measurable, and transparent care [ 3 , 5 ]. Various PROs have been established to reflect the individual’s perceived state of health [ 6 ]. There are disease-specific PROs, such as the rheumatoid arthritis disease activity index [ 7 ], or more general PROs, such as the Health Assessment Questionnaire Disability Index (HAQ-DI) [ 8 ].…”

Section: Introductionmentioning

confidence: 99%

Acceptance, Usage, and Barriers of Electronic Patient-Reported Outcomes Among German Rheumatologists: Survey Study

Krusche¹,

Klemm²,

Grahammer³

et al. 2020

JMIR Mhealth Uhealth

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Background The use of patient-reported outcomes (PROs) allows for patient-centered, measurable, and transparent care. Electronic PROs (ePROs) have many benefits and hold great potential to improve current usage of PROs, yet limited evidence exists regarding their acceptance, usage, and barriers among rheumatologists. Objective This study aims to evaluate the current level of acceptance, usage, and barriers among German rheumatologists regarding the use of ePROs. The importance of different ePRO features for rheumatologists was investigated. Additionally, the most frequently used PROs for patients with rheumatoid arthritis (RA) were identified. Methods Data were collected via an online survey consisting of 18 questions. The survey was completed by members of the Working Group Young Rheumatology of the German Society for Rheumatology (Arbeitsgemeinschaft Junge Rheumatologie der Deutschen Gesellschaft für Rheumatologie [DGRh]) at the 2019 annual DGRh conference. Only members currently working in clinical adult rheumatology were eligible to complete the survey. Results A total of 119 rheumatologists completed the survey, of which 107 (89.9%) reported collecting PROs in routine practice and 28 (25.5%) already used ePROs. Additionally, 44% (43/97) were planning to switch to ePROs in the near future. The most commonly cited reason for not switching was the unawareness of suitable software solutions. Respondents were asked to rate the features of ePROs on a scale of 0 to 100 (0=unimportant, 100=important). The most important features were automatic score calculation and display (mean 77.50) and simple data transfer to medical reports (mean 76.90). When asked about PROs in RA, the respondents listed pain, morning stiffness, and patient global assessment as the most frequently used PROs. Conclusions The potential of ePROs is widely seen and there is great interest in them. Despite this, only a minority of physicians use ePROs, and the main reason for not implementing them was cited as the unawareness of suitable software solutions. Developers, patients, and rheumatologists should work closely together to help realize the full potential of ePROs and ensure a seamless integration into clinical practice.

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“…Patients suggested the EQ-5D-5L be included monthly alongside falls calendars. A systematic review on the use of PROMs in clinical practice for rheumatoid arthritis 33 showed the feasibility of doing so, as most studies cited that administration was done every 3 months. Furthermore, the EQ-5D-5L was one of the PROMs that was more frequently collected.…”

Section: Discussionmentioning

confidence: 99%

<p>Patient-Reported Outcome Measures (PROMs) to Support Adherence to Falls Prevention Clinic Recommendations: A Qualitative Study</p>

Tai¹,

Li²,

Liu‐Ambrose³

et al. 2020

PPA

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Purpose We examined how patient-reported outcome measures (PROMs) support patients’ adherence to fall prevention recommendations in a novel primary care setting – the Falls Prevention Clinic. Patients and Methods Using a patient-oriented qualitative study design, we recruited patient partners to our study team to assist in developing focus group prompts. A trained facilitator conducted five semi-structured interviews with a total of 21 Falls Prevention Clinic participants. A trained facilitator prompted participants about: their views on the EuroQol 5 domain – 5 level (EQ-5D-5L) PROM, their preferences for PROM administration and feedback, the presentation of PROM questionnaire data, the use of comparative data and the EQ-5D-5L in improving adherence to recommendations, and other information they would need to improve adherence. Participants’ responses were coded according to three stages of qualitative analysis: open, axial and selective coding using an iterative and comparative approach. Results “Opportunity” and “Development” emerged as higher-level themes for the participants’ perspectives on how the EQ-5D-5L may be helpful for their appointments. “Frequency” described how often the participants believed the EQ-5D-5L should be administered and feedback provided. “Challenges”, “Benefits”, “Patients’ Understanding”, “Relevance of Data”, and “Usefulness of Data” provided insight on how PROMs data presentation was viewed by patients. “Performance”, “Resources”, “Knowledge”, “Role in Behaviour Change” highlighted the participants’ ideas for the role of the EQ-5D-5L and additional information in supporting their adherence to falls prevention recommendations. Participants emphasized that patients would value further support information to facilitate their adherence. Conclusion This patient-oriented qualitative study, among individuals at high risk of future falls, sheds light on the importance of timely, understandable feedback, integrated with other clinical feedback in supporting adherence.

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The use of routinely collected patient-reported outcome measures in rheumatoid arthritis

Cited by 22 publications

References 25 publications

The impact of different (rheumatoid) arthritis phenotypes on patients’ lives

The impact of different (rheumatoid) arthritis phenotypes on patients’ lives

Acceptance, Usage, and Barriers of Electronic Patient-Reported Outcomes Among German Rheumatologists: Survey Study

<p>Patient-Reported Outcome Measures (PROMs) to Support Adherence to Falls Prevention Clinic Recommendations: A Qualitative Study</p>

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