THU0655 Patients' evaluation of dutch health care in systemic sclerosis: unmet needs and preferences

Abstract

Background: Systemic sclerosis (SSc) is a chronic, heterogeneous autoimmune disease with a large impact on quality of life. To optimise health care, more insight is needed in patients' experiences of the currently provided care. Objectives: To identify unmet needs and preferences from a patient point of view regarding health care in the Netherlands Methods: 2093 patients with SSc, from both regional (n=7) and university hospitals (n=6) in the Netherlands, were invited through their rheumatologist for an online, anonymous questionnaire comprising multiple choice, multiple response and open questions about health care needs, quality of care (CQ index), and additional sociodemographic characteristics. Questions were based on results from a literature study and three semi-structured multicenter focusgroup interviews with 23 patients. Eight themes were identified (table 1). Results: 493 patients, median age was 60 years and 73% were women, completed the questionnaire at the 10th of January 2018. Inclusion is still ongoing. Patients had been diagnosed for a median period of four years, 38% and 23% reported having been diagnosed with limited or diffuse cutaneous SSc, respectively. Interestingly, 39% did not know the subtype. 50% received care in a centre of expertise and 32% in ≥two centres. 32% had to travel >one hour for each visit. Themes containing the most important unmet needs were;1 multidisciplinary collaboration; 2 education of caregivers;3 patient information;4 the role of the patient and;5 non-pharmacological care. Multidisciplinary collaboration was rated 68 out of 100 and information exchange among physicians 66 out of 100. The lack of knowledge about the disease among health professionals (40%) and difficulty finding experts in SSc (25%) were most reported hurdles.10% of patients did not receive any information from the rheumatologist at time of diagnosis, but when provided 97% thought this information was clear. Although most of the patients were involved in treatment decisions (83%), 12% did not receive the care they needed in their opinion. 60% was referred to a specialised nurse for non-pharmacological support. During hospital visits, more focus was preferred on fatigue (45%, n=227), Raynaud's phenomenon (31%, n=155), physical disabilities (29%, n=147), impaired hand function (26%, n=129) and coping with the unpredictable course of the disease (25%, n=124). Highest priority was given to improved knowledge among general practitioners (67%), multidisciplinary collaboration (43%) and information exchange among health care providers (25%) (figure 1) (Figure Presented) Conclusions: SSc patients mainly prefer more attention to symptoms during doctor's visits and wish for improved collaboration and information exchange among health care providers. This knowledge will guide the nation-wide initiative to optimise health care for patients with SSc in The Netherlands.