Embedded Files
participation. Survey Details The survey contained 41 questions and took respondents an average of 11 minutes to complete. It explored four aspects of patients’ lives: (i) relationships with others, (ii) ability to work and career progression, (iii) ability to perform normal activities, and (iv) aspirations for the future. We also examined the differences between patient and HCP perceptions of how RA affects patients and the relationship between social support structures for patients and their outlook on living with RA. The impact of RA on patients’ relationships with others included aspects such as effect on personal relationships (children, colleagues, friends, spouse/partner, other family), ability to interact with their children, trust in others, ability to relate to others, quality of time spent with their children, inclusion in family or social events, and intimacy with a partner. Patients’ career progression and level of support in the workplace were explored by questions about the flexibility of and physical and emotional support from work colleagues. The questionnaire also examined the obstacles and difficulties patients experienced in the workplace, including difficulty using hands, pain, fatigue, stress, reliance on others, fluctuation and unpredictability of disease, and ability to get to and from work. The effects of RA on, and barriers to undertaking, normal activities were examined using questions about difficulties in exercising, carrying out housework, socializing, washing/personal grooming, and sex and intimacy. The impact of RA on patients’ perspectives for the future was examined with regards to how people around them viewed their disease and which activities were more important for patients, including going out with friends, everyday activities in the home, taking a holiday, exercising, and having an intimate relationship. AnalysesNot all patients and HCPs answered all of the questions. Categorical data were therefore presented as percentages of participants, calculated using the number of observations with non-missing values as the denominator (unless noted otherwise). All analyses were descriptive; no formal statistical comparisons were performed. The study is reported according to Strengthening the Reporting of Observational studies in Epidemiology (STROBE) recommendations for the reporting of observational studies.Results Respondent DemographicsA total of 85 patients and 24 HCPs participated in the survey. Of the 85 patients, 51 were female (60%), and the mean patient age (± standard deviation) was 46.0 ± 10.0 years; 68 patients (80%) were aged >40 years. The mean time since diagnosis of RA was 7.7 ± 7.5 years, and the time since diagnosis was <5 years for 42 patients (49%). For HCPs, the sex ratio was 50:50 female to male, and the mean age was 45.6 ± 10.0 years Of participating patients, 57 (67%) felt that the people around them understood the emotional impact of RA, compared with 10 HCPs (42%) (Figure 1A). For patients aged <40 years, 41% considered the emotional impact of RA on their lives to be understood, compared with 71% of those aged 40–59 years and 100% of those aged ≥60 years (Figure 1B). In total, 52 patients (61%) and 9 HCPs (38%) felt the people around them understood the physical impact of RA (Figure 1A). As with emotional impact, younger patients were more likely than older patients to perceive that the physical impact of RA was not understood by others There were no clear trends towards a perceived positive or negative impact of RA on personal relationships, including the ability to interact with their children, trust in others, ability to relate to others, and quality of time spent with others. However, responses from HCPs and patients differed regarding the effect of RA on inclusion in family or social events and intimacy with a partner: a majority of HCPs (12/22 [55%] and 9/22 [41%], respectively)
Report abuse