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

Research

Andrew A. Dwyer¹  Jasmina Bogdanovic²  Catherine Blatter²  Patrizia Künzler-Heule³  Dunja Nicca⁴  Michael Simon⁵  Agnes Kocher⁶  Ulrich A. Walker⁷  Oliver Distler⁸  Peter M. Villiger⁹  Diana Dan^1,10 

[1] Boston College, Connell School of Nursing, Chestnut Hill, MA, USA;Center for Nursing Research, Massachusetts General Hospital Munn, Boston, MA, USA;Department Public Health (DPH), Institute of Nursing Science (INS), Faculty of Medicine, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland;Department Public Health (DPH), Institute of Nursing Science (INS), Faculty of Medicine, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland;Department of Gastroenterology/Hepatology, Cantonal Hospital St. Gallen, St. Gallen, Switzerland;Department of Nursing, Cantonal Hospital St. Gallen, St. Gallen, Switzerland;Department Public Health (DPH), Institute of Nursing Science (INS), Faculty of Medicine, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland;Department of Global and Public Health, Institute for Epidemiology, Biostatistics and Prevention, University of Zurich, Zurich, Switzerland;Department Public Health (DPH), Institute of Nursing Science (INS), Faculty of Medicine, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland;Department of Nursing, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland;Department Public Health (DPH), Institute of Nursing Science (INS), Faculty of Medicine, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland;Department of Rheumatology and Immunology, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland;Department of Rheumatology, University Hospital Basel, Basel, Switzerland;Department of Rheumatology, University Hospital Zurich, University of Zurich, Zurich, Switzerland;Medical Center Monbijou, 3011, Bern, Switzerland;Service of Rheumatology, Lausanne University Hospital, University of Lausanne, Lausanne, Switzerland;

关键词: Health-related quality of life;    Health services research;    Nursing;    Outcome and process assessment;    Patient-centered care;    Patient-reported outcome measures;    Rare diseases;    Rheumatology;    Scleroderma;    Systemic sclerosis;   

DOI  :  10.1186/s13023-022-02604-2

 received in 2022-08-25, accepted in 2022-12-19,  发布年份 2022

来源: Springer

【 摘 要 】

BackgroundThe 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.MethodsWe 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.ResultsThe 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’.ConclusionsThe 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.

【 授权许可】

CC BY   
© The Author(s) 2022

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