Patient involvement in rheumatoid arthritis care to improve disease activity-based management in daily practice: A randomized controlled trial

Jonge, Marieke J. Spijk-de; Weijers, Julia M; Teerenstra, Steven; Elwyn, Glyn; Laar, Mart Afj van de; Riel, P.L. van; Huis, Anita; Hulscher, Marlies

doi:10.1016/j.pec.2021.08.013

Cited by 7 publications

(2 citation statements)

References 32 publications

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“…Several studies have revealed similar gaps in SSc care delivery (i.e., lack of structured multidisciplinary collaboration, inadequately organized follow-up, poor patient-provider relationships [ 17 , 59 , 66 – 68 ]. Despite the positive impact the chronic care model has demonstrated on disease outcomes, rare disease care models rarely test multi-component interventions (e.g., patient education, patient-held medical records, specialist nurse-led care) in providing coordinated, ongoing, complex care [ 32 , 69 ] and infrequently incorporate community-based resources [ 70 , 71 ]. In diabetes and cancer, chronic care implementation has long utilized specialized nurses and peers for support, case-management and counselling to improve patient-centredness, satisfaction with care and clinical outcomes [ 72 – 75 ].…”

Section: Discussionmentioning

confidence: 99%

Patient Assessment Chronic Illness Care (PACIC) and its associations with quality of life among Swiss patients with systemic sclerosis: a mixed methods study

Kocher

Simon

Dwyer

et al. 2023

Orphanet J Rare Dis

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Background The Chronic Care Model (CCM) is a longstanding and widely adopted model guiding chronic illness management. Little is known about how CCM elements are implemented in rare disease care or how patients’ care experiences relate to health-related quality of life (HRQoL). We engaged patients living with systemic sclerosis (SSc) to assess current care according to the CCM from the patient perspective and their HRQoL. Methods We employed an explanatory sequential mixed methods design. First, we conducted a cross-sectional quantitative survey (n = 101) using the Patient Assessment of Chronic Illness Care (PACIC) and Systemic Sclerosis Quality of Life (SScQoL) questionnaires. Next, we used data from individual patient interviews (n = 4) and one patient focus group (n = 4) to further explore care experiences of people living with SSc with a focus on the PACIC dimensions. Results The mean overall PACIC score was 3.0/5.0 (95% CI 2.8–3.2, n = 100), indicating care was ‘never’ to ‘generally not’ aligned with the CCM. Lowest PACIC subscale scores related to ‘goal setting/tailoring’ (mean = 2.5, 95% CI 2.2–2.7) and ‘problem solving/contextual counselling’ (mean = 2.9, 95% CI 2.7–3.2). No significant correlations were identified between the mean PACIC and SScQoL scores. Interviews revealed patients frequently encounter major shortcomings in care including ‘experiencing organized care with limited participation’, ‘not knowing which strategies are effective or harmful’ and ‘feeling left alone with disease and psychosocial consequences’. Patients often responded to challenges by ‘dealing with the illness in tailored measure’, ‘taking over complex coordination of care’ and ‘relying on an accessible and trustworthy team’. Conclusions The low PACIC mean overall score is comparable to findings in patients with common chronic diseases. Key elements of the CCM have yet to be systematically implemented in Swiss SSc management. Identified gaps in care related to lack of shared decision-making, goal-setting and individual counselling-aspects that are essential for supporting patient self-management skills. Furthermore, there appears to be a lack of complex care coordination tailored to individual patient needs.

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Section: Discussionmentioning

confidence: 99%

Patient Assessment Chronic Illness Care (PACIC) and its associations with quality of life among Swiss patients with systemic sclerosis: a mixed methods study

Kocher

Simon

Dwyer

et al. 2023

Orphanet J Rare Dis

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“…Even if patient involvement is considered a criterion for the quality of healthcare services [6], meaningful involvement faces several barriers [7]. Patients' health literacy and their desire to be actively involved in their health vary and healthcare professionals have reported a lack of knowledge regarding the implementation of PE [8].…”

Section: Introductionmentioning

confidence: 99%

Patient Involvement in the Rehabilitation Process Is Associated with Improvement in Function and Goal Attainment: Results from an Explorative Longitudinal Study

Sagen,

Kjeken,

Habberstad

et al. 2024

JCM

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The objective was to explore the associations between patient involvement in the rehabilitation process and improvements in function and goal attainment in the first year after rehabilitation. The longitudinal multicenter study RehabNytte provided data from participants who had been referred to rehabilitation (n = 2113). Quality indicator (QI) pass rates (% yes) were used to assess patient involvement in the rehabilitation process. The Patient-Specific Functional Scale (PSFS) (10 = best possible) was used to assess function. The outcome QI on goal achievement (response options of yes/no) was used to assess goal attainment. Logistic regression and paired sample t-tests were used to examine associations and mean changes in function from rehabilitation admission up to 3, 6, and 12 months. Most participants (95%) were involved in goal-setting, which was positively associated with younger age (OR 0.97, 95% CI 0.95–0.99) and female sex (OR 1.87, 95% CI 1.15–3.02). Function improved over the follow-up period, with greater improvements in the active goal-setting group. Being involved in goal planning almost tripled the odds of goal attainment (OR 2.78, 95% CI 1.60–4.83) and involvement in the rehabilitation plan almost doubled it (OR 1.99, 95% CI 1.41–2.81). Most participants were involved in rehabilitation goal-setting/planning and being involved was associated with beneficial functional outcomes and greater goal attainment.

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Barriers to, Facilitators of, and Interventions to Support Treat‐to‐Target Implementation in Rheumatoid Arthritis: A Systematic Review

Gossec,

Bessette,

Xavier

et al. 2024

Arthritis Care & Research

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ObjectiveTreat‐to‐target (T2T) is recommended in the management of rheumatoid arthritis (RA) but its implementation is suboptimal. We aimed to identify interventional strategies targeted at improving T2T implementation in RA by systematically reviewing published evidence on barriers to, facilitators of, and interventions to support T2T implementation.MethodsSystematic and scoping literature searches in PubMed/MEDLINE®, BIOSIS Previews®, Derwent Drug File, Embase®, EMCare®, International Pharmaceutical Abstracts, and SciSearch® were conducted to identify barriers/facilitators and interventions relating to T2T implementation in RA. The quality of included studies was assessed using Critical Appraisal Skills Programme (CASP) checklists. Data related to barriers/facilitators and interventions were extracted, grouped, and summarized descriptively, and a narrative synthesis was generated.ResultsIn total, 146 articles were analyzed, of which 123 (84%) included ≥50% of the items assessed by CASP checklists. Of the 146 studies, 76 evaluated T2T barriers and facilitators, from which 329 relevant statements were identified and regrouped into 18 target areas, including: healthcare professionals’ (HCPs’) or patients’ knowledge or perceptions; patient–HCP communication or alignment; and time or resources. Overall, 56 interventions were identified from 70 studies across the 18 target areas; 54% addressed disease activity or patient‐reported outcome assessments. Of the 56 interventions identified, 36 improved T2T implementation and/or patient outcomes in RA.ConclusionDespite long‐established T2T recommendations, there remain many barriers to its implementation. Interventions to improve T2T should be developed further and assessed, with a particular focus on tailoring them to individual countries, regions, and healthcare settings.

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Patient involvement in rheumatoid arthritis care to improve disease activity-based management in daily practice: A randomized controlled trial

Cited by 7 publications

References 32 publications

Patient Assessment Chronic Illness Care (PACIC) and its associations with quality of life among Swiss patients with systemic sclerosis: a mixed methods study

Patient Assessment Chronic Illness Care (PACIC) and its associations with quality of life among Swiss patients with systemic sclerosis: a mixed methods study

Patient Involvement in the Rehabilitation Process Is Associated with Improvement in Function and Goal Attainment: Results from an Explorative Longitudinal Study

Barriers to, Facilitators of, and Interventions to Support Treat‐to‐Target Implementation in Rheumatoid Arthritis: A Systematic Review

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