Comparative analysis of educational needs of patients with rheumatic diseases selected based on the Polish version of the Educational Needs Assessment Tool (Pol-ENAT)

Abstract

ObjectivesChronic rheumatic diseases, which have a progressive course, lead to large deficits in physical, mental and social functioning. In the process of the planned and systematic education of patients/families, it is extremely important to identify patients’ health problems as well as their needs and expectations. Study objectives: To assess the learning needs of patients with rheumatoid arthritis (RA) and systemic sclerosis (SSc).Material and methodsThis was a multicenter, cross-sectional study conducted in seven rheumatology centers in Poland. Health problems were defined as disability (HAQ-DI), pain (Pain VAS), fatigue (Fatigue VAS) and severity of disease (0–100). The educational needs were measured using the Pol-ENAT (0–156). Statistical analysis was performed using PQStat v.1.4.2 and Excel.ResultsThe study involved 277 patients with rheumatoid arthritis and 140 with systemic sclerosis. The average age of respondents was comparable in RA (53.3 ±13.0 years) and SSc (54.1 ±14.2 years). Patients suffered from RA on average for 13.7 ±10.6 years and from SSc for 10.9 ±10.3 years. With age and duration of disease, the health problems worsened (p < 0.05). The reported needs of education (Pol-ENAT) were generally at the secondary level – RA 66.4 ±29.3 – younger people (p = 0.008) and those with early RA (r = –0.151, p = 0.011); SSc 71.5 ±27.7 – regardless of age and duration of SSc. Educational needs of patients with SSc correlated with the severity of certain health problems and health evaluation (pain r = 0.334, p < 0.001; fatigue r = 0.243, p = 0.004; severity of disease r = 0.242, p = 0.004 and disability r = 0.291, p < 0.001).ConclusionsAll patients reported the need for education, although it was slightly higher in patients with SSc. There was a decline in interest in education with progressive disability in RA, while in SSc interest in education increased with the progress and severity of the disease.

Everything you always wanted to know about systemic sclerosis but were afraid to ask: Part 1. Clinical pictures

“…In this form of SSc, the most commonly affected internal organ is the digestive tract, especially the esophagus, followed by interstitial lung disease (ILD). The heart is relatively rarely affected, whereas pulmonary arterial hypertension and primary biliary cirrhosis of the liver are more common than in diffuse systemic sclerosis [5]; diffuse systemic sclerosis, characterised by skin lesions affecting the face, proximal parts of the upper and lower limbs, and trunk. The course of the disease is usually more severe and rapid compared to the limited form of systemic sclerosis.…”

“…The later it occurs, the worse the prognosis regarding disease severity. The lungs are most commonly affected (ILD), followed by the digestive tract, then the heart and kidneys [5];…”

“…systemic sclerosis sine scleroderma -lesions typical of internal organ scleroderma, serological changes without skin lesions [5]; overlap syndromes -clinical manifestations of scleroderma overlap with manifestations of another systemic disease, such as rheumatoid arthritis or dermatomyositis [5]; some authors also include early scleroderma as a clinical form of SSc, which is also referred to as high-risk syndrome for SSc.…”

Developing a rare disease chronic care model: Management of systemic sclerosis (MANOSS) study protocol

“…Several studies have investigated SSc patients' informational and educational needs and available education programs (Mouthon et al, 2017;Schouffoer et al, 2015Schouffoer et al, , 2011Sierakowska, Sierakowski, Sierakowska, & Krajewska-Kulak, 2016). However, only one has developed and evaluated a structured SSc selfmanagement program that does not require participants to travel to a centralized location.…”