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• W4313887904 abstract "Abstract 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." @default.
• W4313887904 created "2023-01-10" @default.
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• W4313887904 date "2023-01-09" @default.
• W4313887904 modified "2023-10-12" @default.
• W4313887904 title "Patient Assessment Chronic Illness Care (PACIC) and its associations with quality of life among Swiss patients with systemic sclerosis: a mixed methods study" @default.
• W4313887904 cites W1491116502 @default.
• W4313887904 cites W1573037472 @default.
• W4313887904 cites W1584625535 @default.
• W4313887904 cites W1961129378 @default.
• W4313887904 cites W1970443491 @default.
• W4313887904 cites W1979290264 @default.
• W4313887904 cites W1984081413 @default.
• W4313887904 cites W2002955255 @default.
• W4313887904 cites W2028902836 @default.
• W4313887904 cites W2049465834 @default.
• W4313887904 cites W2049895337 @default.
• W4313887904 cites W2058388242 @default.
• W4313887904 cites W2060319312 @default.
• W4313887904 cites W2062677753 @default.
• W4313887904 cites W2066005581 @default.
• W4313887904 cites W2076735433 @default.
• W4313887904 cites W2081207448 @default.
• W4313887904 cites W2089994992 @default.
• W4313887904 cites W2092608032 @default.
• W4313887904 cites W2109112560 @default.
• W4313887904 cites W2120565727 @default.
• W4313887904 cites W2121837363 @default.
• W4313887904 cites W2131039135 @default.
• W4313887904 cites W2135575980 @default.
• W4313887904 cites W2147629356 @default.
• W4313887904 cites W2149119146 @default.
• W4313887904 cites W2154847033 @default.
• W4313887904 cites W2165272338 @default.
• W4313887904 cites W2169362019 @default.
• W4313887904 cites W2200286773 @default.
• W4313887904 cites W2285276662 @default.
• W4313887904 cites W2307931570 @default.
• W4313887904 cites W2323939986 @default.
• W4313887904 cites W2342578606 @default.
• W4313887904 cites W2344171321 @default.
• W4313887904 cites W2413988678 @default.
• W4313887904 cites W2463858162 @default.
• W4313887904 cites W2549071917 @default.
• W4313887904 cites W2551533543 @default.
• W4313887904 cites W2565010544 @default.
• W4313887904 cites W2600547391 @default.
• W4313887904 cites W2602586351 @default.
• W4313887904 cites W2606735214 @default.
• W4313887904 cites W2619248156 @default.
• W4313887904 cites W2772804371 @default.
• W4313887904 cites W2786653360 @default.
• W4313887904 cites W2787671188 @default.
• W4313887904 cites W2802162970 @default.
• W4313887904 cites W2804487239 @default.
• W4313887904 cites W2808905908 @default.
• W4313887904 cites W2851543973 @default.
• W4313887904 cites W2900909070 @default.
• W4313887904 cites W2914392315 @default.
• W4313887904 cites W2971287069 @default.
• W4313887904 cites W2972261184 @default.
• W4313887904 cites W2972563397 @default.
• W4313887904 cites W2973258626 @default.
• W4313887904 cites W2977429294 @default.
• W4313887904 cites W2992468591 @default.
• W4313887904 cites W3011274452 @default.
• W4313887904 cites W3012330377 @default.
• W4313887904 cites W3025938630 @default.
• W4313887904 cites W3035626568 @default.
• W4313887904 cites W3046621980 @default.
• W4313887904 cites W3094846012 @default.
• W4313887904 cites W3104085542 @default.
• W4313887904 cites W3107521704 @default.
• W4313887904 cites W3116370823 @default.
• W4313887904 cites W3118532049 @default.
• W4313887904 cites W3133194408 @default.
• W4313887904 cites W3192335238 @default.
• W4313887904 cites W3196248414 @default.
• W4313887904 cites W4211149849 @default.
• W4313887904 cites W4243636675 @default.
• W4313887904 cites W1606466574 @default.
• W4313887904 doi "https://doi.org/10.1186/s13023-022-02604-2" @default.
• W4313887904 hasPubMedId "https://pubmed.ncbi.nlm.nih.gov/36624535" @default.
• W4313887904 hasPublicationYear "2023" @default.
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