Background Effective and sufficient levels of care and support for individuals newly diagnosed and those with established Rheumatoid Arthritis (RA) are needed to ensure optimal physical and mental health, as well as health-related quality of life. The aim of this study was to explore the extent of care needs among individuals with RA living in Scotland, UK and the factors that contribute to them, such as co-morbidities, perceived caregiver burden and complex care needs.
Objectives To establish whether the health and social care needs of people with RA in Scotland were being met, if there was regional variation and what other factors impacted such as wealth and age.
Methods A cross-sectional study of individuals with RA who responded to an online survey (available 11 Nov 2015 to 22 Jan 2016) who were aged ≥16 years, lived in Scotland and reported they had received a clinical diagnosis of RA. Respondents were allowed to skip questions they wished not to answer; standardised instruments were used (e.g., the Self-administered Comorbidity Questionnaire and the Self-Perceived Burden Scale). Descriptive analyses of quantitative data and thematic analyses of free text responses were conducted.
Results Overall, 387 individuals participated. The majority were female, of White Scottish or White British background, 45–64 years, and lived in a household with ≥2 people. The majority, 83%, reported well established RA (diagnosis ≥2 years ago) and at least one other comorbidity (78%) – most commonly depression (30%). The average number of medications taken for RA was 3.2 (range 0–7) and 30% reported taking 3 medications in total. Of those receiving care, the majority (97/101) named family or friends/neighbours as caregivers and 76% (80/97) had an elevated level of self-perceived burden on their caregiver. Respondents who reported anxiety or depression had significantly higher average self-perceived burden scores when compared to those without, 33.0 versus 27.3.
89% responded that they did not know what types of circumstances might make them eligible for care and support from their local Council, and only 10% reported receiving information about care and support from their local council. Very few (n=40) had an assessment, with half being deemed eligible for support from their local council.
Conclusions Survey responses suggest individuals with RA lack fundamental information about qualifying for and accessing formal resources and services provided by their local council. This is especially crucial for two reasons: 1) respondents indicated they do not want to rely heavily on others, like family or friends who are often the primary caregivers; 2) depression and anxiety are highly prevalent in this population. It is important to ensure those with RA do not have unmet needs at any stage, from being newly diagnosed to having established RA, so that they can flourish at home, at work and in their leisure time. Local councils should make access to information about help with formal social care easily accessible and ensure that health professionals know how best to sign-post people.
Acknowledgements A partnership between the National Rheumatoid Arthritis Society (UK) and the University of Aberdeen
Disclosure of Interest None declared