Patient-centred care in established rheumatoid arthritis

Voshaar, Marieke; Nota, Ingrid; Laar, Mart A F J van de; Bemt, Bart J F van den

doi:10.1016/j.berh.2015.09.007

Cited by 107 publications

(78 citation statements)

References 132 publications

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“…Treatment response is also unpredictable with marked individual variation in drug effectiveness or adverse effects, and there are changes in efficacy over time. Regular follow-up and monitoring of patient disease activity to guide treatment is required to achieve RA remission or low disease activity state [3] and patient-centered care is important in the optimal management of RA [4]. Guidelines recommend that rheumatologist assessment of RA disease activity should include some or all of the validated measures of disease activity or patient physical function, and a composite disease activity measure, such as the Disease Activity Score including 28 joints (DAS28) [3,5].…”

Section: Introductionmentioning

confidence: 99%

Apps for People With Rheumatoid Arthritis to Monitor Their Disease Activity: A Review of Apps for Best Practice and Quality

Grainger¹,

Townsley²,

White³

et al. 2017

JMIR Mhealth Uhealth

142

110

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BackgroundRheumatoid arthritis (RA) is a chronic inflammatory arthritis requiring long-term treatment with regular monitoring by a rheumatologist to achieve good health outcomes. Since people with RA may wish to monitor their own disease activity with a smartphone app, it is important to understand the functions and quality of apps for this purpose.ObjectiveThe aim of our study was to assess the features and quality of apps to assist people to monitor their RA disease activity by (1) summarizing the available apps, particularly the instruments used for measurement of RA disease activity; (2) comparing the app features with American College of Rheumatology and European League against Rheumatism (ACR and EULAR) guidelines for monitoring of RA disease activity; and (3) rating app quality with the Mobile App Rating Scale (MARS).MethodsSystematic searches of the New Zealand iTunes and Google Play app stores were used to identify all apps for monitoring of RA disease activity that could be used by people with RA. The apps were described by both key metadata and app functionality. App adherence with recommendations for monitoring of RA disease activity in clinical practice was evaluated by identifying whether apps included calculation of a validated composite disease activity measure and recorded results for future retrieval. App quality was assessed by 2 independent reviewers using the MARS.ResultsThe search identified 721 apps in the Google Play store and 216 in the iTunes store, of which 19 unique apps met criteria for inclusion (8 from both app stores, 8 iTunes, and 3 Google Play). In total, 14 apps included at least one validated instrument measuring RA disease activity; 7 of 11 apps that allowed users to enter a joint count used the standard 28 swollen and tender joint count; 8 apps included at least one ACR and EULAR-recommended RA composite disease activity (CDA) measure; and 10 apps included data storage and retrieval. Only 1 app, Arthritis Power, included both an RA CDA measure and tracked data, but this app did not include the standard 28 tender and swollen joint count. The median overall MARS score for apps was 3.41/5. Of the 6 apps that scored ≥4/5 on the overall MARS rating, only 1 included a CDA score endorsed by ACR and EULAR; however, this app did not have a data tracking function.ConclusionsThis review found a lack of high-quality apps for longitudinal assessment of RA disease activity. Current apps fall into two categories: simple calculators primarily for rheumatologists and data tracking tools for people with RA. The latter do not uniformly collect data using validated instruments or composite disease activity measures. There is a need for appropriate, high-quality apps for use by rheumatologists and patients together in co-management of RA.

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Section: Introductionmentioning

confidence: 99%

Apps for People With Rheumatoid Arthritis to Monitor Their Disease Activity: A Review of Apps for Best Practice and Quality

Grainger¹,

Townsley²,

White³

et al. 2017

JMIR Mhealth Uhealth

142

110

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“…Shared decision-making (SDM) is one of the main activities of patient-centred care [1, 2]. It involves the exchange of information and negotiation between the clinician and the patient to agree on the best way to medically proceed for the individual patient [3].…”

Section: Introductionmentioning

confidence: 99%

Development of a web-based patient decision aid for initiating disease modifying anti-rheumatic drugs using user-centred design methods

Nota

Drossaert

Melissant

et al. 2017

BMC Med Inform Decis Mak

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BackgroundA main element of patient-centred care, Patient Decision Aids (PtDAs) facilitate shared decision-making (SDM). A recent update of the International Patient Decision Aids Standards (IPDAS) emphasised patient involvement during PtDA development, but omitted a methodology for doing so. This article reports on the value of user-centred design (UCD) methods for the development of a PtDA that aims to support inflammatory arthritis patients in their choice between disease modifying anti-rheumatic drugs (DMARDs).MethodsThe IPDAS development process model in combination with UCD methods were applied. The process was overseen by an eight-member multidisciplinary steering group. Patients and health professionals were iteratively consulted. Qualitative in-depth interviews combined with rapid prototyping were conducted with patients to assess their needs for specific functionality, content and design of the PtDA. Group meetings with health professionals were organized to assess patients’ needs and to determine how the PtDA should be integrated into patient pathways. The current literature was reviewed to determine the clinical evidence to include in the PtDA. To evaluate usability among patients, they were observed using the PtDA while thinking aloud and then interviewed.ResultsThe combination of patient interviews with rapid prototyping revealed that patients wanted to compare multiple DMARDs both for their clinical aspects and implications for daily life. Health professionals mainly wanted to refer patients to a reliable, easily adjustable source of information about DMARDs. A web-based PtDA was constructed consisting of four parts: 1) general information about SDM, inflammatory arthritis and DMARDs; 2) an application to compare particular DMARDs; 3) value clarification exercises; and 4) a printed summary of patients’ notes, preferences, worries and questions that they could bring to discuss with their rheumatologist.ConclusionsThe study demonstrated that UCD methods can be of great value for the development of PtDAs. The early, iterative involvement of patients and health professionals was helpful in developing a novel user-friendly PtDA that allowed patients to choose between DMARDs. The PtDA fits the values of all stakeholders and easily integrates with the patient pathway and daily workflow of health professionals. This collaborative designed PtDA may improve SDM and patient participation in arthritis care.Electronic supplementary materialThe online version of this article (doi:10.1186/s12911-017-0433-5) contains supplementary material, which is available to authorized users.

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“…These patients describe self-awareness as being aware of the body and using personal resources in order to find a balance between managing their disease and their treatment and carrying out the activities of their daily lives 30,56–58. Health care professionals can support patients in balancing the daily activities in life, and person-centered care, in which an individual patient is seen as a unique person with physical, mental, and social needs, facilitates this 53,59. The participants in this study emphasized the importance of taking control over their lives, and thus, the patient should be the one who invites the health care professionals to participate in their care and not the other way around.…”

Section: Discussionmentioning

confidence: 99%

Patients’ conceptions of their own influence on good treatment response to biological therapy in chronic inflammatory arthritis

Larsson¹

2017

PPA

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BackgroundBiological therapies are common in the treatment of patients with chronic inflammatory arthritis (CIA). However, despite the fact that many patients respond well to their biological therapies, there are still a number of nonresponders. In order to design the best care for patients, it is important to understand how they conceive their own role in their treatment response.ObjectiveTo explore how patients with CIA conceive their own influence on a good treatment response to biological therapy.MethodsThis study had an exploratory and descriptive design with a phenomenographic approach. Interviews were conducted with 25 patients (11 women and 14 men) aged 17–79 years, with CIA who were undergoing biological therapy and who had low disease activity or were in remission.ResultsPatients with CIA undergoing biological therapy conceived their own influence on good treatment response in terms of adherence, physical activity, mental attitude, social support, and self-awareness. Adherence was described as the foundation for the patients’ own influence on good treatment response. Physical activity, mental attitude, and social support reflected three essential ways of understanding patients’ influence on good treatment response where the patients spoke about physical strength, mental strength, and social strength. Self-awareness reflected a comprehensive way of influencing good treatment response in which patients balanced their physical, mental, and social resources in partnership with health care professionals.ConclusionPatients conceived that they had a responsibility for adhering to the treatment as well as achieving balance in life in order to ensure good treatment response. Self-awareness was essential for maintaining a good treatment response, and this reflected the patients’ awareness of the complexity of living their lives with a chronic illness.

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Patient-centred care in established rheumatoid arthritis

Cited by 107 publications

References 132 publications

Apps for People With Rheumatoid Arthritis to Monitor Their Disease Activity: A Review of Apps for Best Practice and Quality

Apps for People With Rheumatoid Arthritis to Monitor Their Disease Activity: A Review of Apps for Best Practice and Quality

Development of a web-based patient decision aid for initiating disease modifying anti-rheumatic drugs using user-centred design methods

Patients’ conceptions of their own influence on good treatment response to biological therapy in chronic inflammatory arthritis

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Patient-centred care in established rheumatoid arthritis

Cited by 107 publications

References 132 publications

Apps for People With Rheumatoid Arthritis to Monitor Their Disease Activity: A Review of Apps for Best Practice and Quality

Apps for People With Rheumatoid Arthritis to Monitor Their Disease Activity: A Review of Apps for Best Practice and Quality

Development of a web-based patient decision aid for initiating disease modifying anti-rheumatic drugs using user-centred design methods

Patients&rsquo; conceptions of their own influence on good treatment response to biological therapy in chronic inflammatory arthritis

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Patients’ conceptions of their own influence on good treatment response to biological therapy in chronic inflammatory arthritis