Kocher, Agnes; Simon, Michael; Dwyer, Andrew A; Blatter, Catherine; Bogdanovic, Jasmina; Künzler-Heule, Patrizia; Villiger, Peter M; Dan, Diana; Distler, Oliver; Walker, Ulrich A; Nicca, Dunja (2023). Patient Assessment Chronic Illness Care (PACIC) and its associations with quality of life among Swiss patients with systemic sclerosis: a mixed methods study. Orphanet journal of rare diseases, 18(1), p. 7. BioMed Central 10.1186/s13023-022-02604-2
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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.
Item Type: |
Journal Article (Original Article) |
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Division/Institute: |
04 Faculty of Medicine > Department of Dermatology, Urology, Rheumatology, Nephrology, Osteoporosis (DURN) > Clinic of Rheumatology, Clinical Immunology and Allergology |
UniBE Contributor: |
Simon, Michael |
Subjects: |
600 Technology > 610 Medicine & health |
ISSN: |
1750-1172 |
Publisher: |
BioMed Central |
Language: |
English |
Submitter: |
Pubmed Import |
Date Deposited: |
11 Jan 2023 17:33 |
Last Modified: |
15 Jan 2023 02:19 |
Publisher DOI: |
10.1186/s13023-022-02604-2 |
PubMed ID: |
36624535 |
Uncontrolled Keywords: |
Health services research Health-related quality of life Nursing Outcome and process assessment Patient-centered care Patient-reported outcome measures Rare diseases Rheumatology Scleroderma Systemic sclerosis |
BORIS DOI: |
10.48350/177129 |
URI: |
https://boris.unibe.ch/id/eprint/177129 |
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