Ab1679-Pare the Impact of Hand Function Impairment on Daily Life in Dutch Patients With Systemic Sclerosis - A Qualitative Study

Background: Systemic sclerosis (SSc) is a chronic multiorgan disease that can impact quality of life tremendously. Hand function impairment can potentially limit daily activities in different ways 1. A Dutch cross-sectional study in 650 SSc patients showed that 28% of the respondents mentioned reduced hand function as an unmet need in SSc care 2. In order to improve patient support, further research is needed to better understand the impact of hand function impairment in SSc. Objectives: The aim of this study was to gain a deeper understanding of the various aspects of hand function impairment in the daily lives of Dutch people with SSc and to explore their unmet care needs. Methods: Adult patients with SSc were selected from the outpatient clinic and day care unit from the University Medical Centre Utrecht. Face to face semi-structured interviews were held. Interviews were transcribed verbatim and coded. Additional information on hand function impairment were obtained by hand examination, the modified Hand Mobility in Scleroderma (mHAMIS), Cochin Hand Function Scale (CHFS) and modified Rodnan Skin Score (mRSS). Results: We included 18 patients, compromising 15 female patients (83%) and 3 male patients (17%). The median (IQR) age was 59 (53-65) years. The median (IQR) mRSS was 8 (5-15) points and the median (IQR) CHFS was 36 (25-47) points. The most reported complaints were pain in the hands after activity, loss of sensitivity and of manual strength. We identified 5 themes and 4 sub-themes after analysis of the interviews: types of hand function impairment, impact of hand function impairment (on daily life, (un)paid work, mental health, and relationships), management of hand function impairment, expectations and unmet care needs (see Table 1). Conclusion: This study contributes to better understanding of patients' experiences with hand function impairment on different aspects of daily life and experiences in healthcare. We identified unmet care needs, such as lack of routine monitoring of hand function and lack of awareness of hand impairment among health care providers. REFERENCES: 1 Van Leeuwen NM, Ciaffi J, Liem SIE, et al. Health-related quality of life in patients with systemic sclerosis: evolution over time and main determinants. Rheumatology (Oxford). 2021 Aug 2;60(8):3646–55. 2 Stöcker JK, Vonk MC, van den Hoogen FHJ, et al. Room for improvement in non-pharmacological systemic sclerosis care? — a cross-sectional online survey of 650 patients. BMC Rheumatol. 2020 Dec 31;4(1):43. Acknowledgements: NIL. Disclosure of Interests: None declared.