OP0212-HPR PATIENT ASSESSMENT CHRONIC ILLNESS CARE (PACIC) AND ITS ASSOCIATIONS WITH QUALITY OF LIFE AMONG SWISS PATIENTS WITH SYSTEMIC SCLEROSIS – A MIXED METHODS STUDY

Abstract

BackgroundVariable disease presentation and symptom burden in patients living with systemic sclerosis (SSc) require a chronic care approach including competent, coordinated, multidisciplinary collaboration as well as self-management support targeting individual patient needs. The Chronic Care Model (CCM) is a longstanding and widely adopted model guiding chronic illness management.1 Little is known about how CCM elements are implemented in SSc care or how patients’ care experiences relate to health-related quality of life (HRQoL).ObjectivesFirst, to describe current SSc care in Switzerland according to the CCM from the patient perspective and examine relationships with HRQoL. Second, to explain these results by patients’ illness and care experiences.MethodsWe employed an explanatory sequential mixed methods design (Figure 1). First, we conducted a cross-sectional quantitative survey (n=101 Swiss patients) using the Patient Assessment of Chronic Illness Care (PACIC-20)2 and Systemic Sclerosis Quality of Life (SScQoL)3 questionnaires. Because PACIC has not been used in the context of SSc, we used the Mokken model to test the construct validity of the PACIC scale and its subscales. After excluding five problematic items, H coefficients were ‘strong’ for the subscales and the global scale (0.52) suggesting a robust unidimensional scale.Figure 1.Schematic of the explanatory, sequential mixed methods designNext, 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-15 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 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) (Table 1). No significant associations were identified between the mean PACIC-15 and SScQoL scores.Table 1.Summary of scores (n=101) for the 15-item PACIC scale (adapted version of the original 20-item scale)PACIC mean scores (95% CI)PACIC 15-item mean score3.0 (2.8–3.2)1: Patient activation(mean of items 1–3)3.4 (3.1–3.6)2: Delivery system design/ Decision Support(items 4–6)3.2 (3.0–3.4)3: Goal setting/ Tailoring(items 7–9)2.5 (2.2–2.7)4: Problem solving/ Contextual Counselling(items 12–15)2.9 (2.7–3.2)5: Follow-up/ Coordination(items 19–20)3.3 (3.0–3.5)Note: CI=Confidence interval; PACIC=Patient Assessment of Chronic Illness CareInterviews 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.ConclusionThe 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.