Background Systemic sclerosis (SSc) affects patients' functioning, quality of life and diminishes their life expectancy. More importantly the chronic progressive nature of the disease threatens the patients' life. In planning patient education in people with SSc and their families, it is extremely important to identify their health problems as these may determine their educational needs.
Objectives (1) To identify health problems and the educational needs in people with SSc. (2) To determine the relationship between the health problems and their educational needs.
Methods This was a multicentre cross-sectional study conducted at the Department of Rheumatology and Internal Diseases, in Medical University of Bialystok, and in six other rheumatology centres in Poland. The inclusion criterion was diagnosis of SSc (based on the ACR/EULAR 2013 criteria) and a minimum age of 18 years. Health problems were defined as disability (HAQ-DI), pain (Pain-VAS), fatigue (Fatigue-VAS), morning stiffness (Min), intestinal problems, breathing problems, Raynaud's phenomenon, fingers ulcers and overall disease severity from the patients perspective (0-100mm VAS). The educational needs were measured using the Polish version of educational needs assessment tool (PolENAT). We used Pearson correlation coefficient (r) to report the effect sizes, 0.10, 0.20 and 0.50 representing small, medium and large effects respectively.
Results The sample comprised 140 patients, women being the majority (n=125; 89.3%). They had a mean (±SD) age of 54 years ±14.23 and disease duration of 11 years ±10.27. Reported health problems were particularly severe in patients over 60 years.
The biggest influence on daily activity in the whole study group was pain (r=0.294, p<0.001), morning joints stiffness (r=0.280, p<0.001) and fatigue (r=0.273, p=0.001). While the average value of HAQ was 1.11±0.70, patients with over 60 years had a mean HAQ=1.35 (p=0.001). In general, respondents were interested in patient education. Their reported overall educational needs were high (2.38±0.79).
There was a positive linear relationship between educational needs and disability (r=0.290, p<0.001). Similarly, educational needs were correlated with reported health problems such as pain (r=0.343, p<0.0001), morning stiffness (r=0.269, p=0.001), intensity of disease (r=0.259, p=0.002), fatigue (r=0.254, p=0.002), Raynaud's symptom (r=0.248, p=0.003) and ulceration of fingers (r=0.199, p=0.018).
Conclusions All patients declared the need for education, with greater intensity in the elderly, and longer duration of SSc. Educational needs relate mainly to issues related to the principles of arthritis process, managing pain and self-help measures. Interest in education is dependent on the subjective assessment of the disease and the reported sense of discomfort.
Sierakowska M., et al. Developing the Polish Educational Needs Assessment Tool (Pol-ENAT) in rheumatoid arthritis and systemic sclerosis: a cross-cultural validation study using Rasch analysis. Qual Life Res. 2014.
Disclosure of Interest None declared
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.