Pain, fatigue and functional disability are associated with higher educational needs in systemic sclerosis: a cross-sectional study

Matylda Sierakowska,Elżbieta Krajewska-Kułak,Stanisław Sierakowski,Mwidimi Ndosi,Justyna Sierakowska

doi:10.1007/s00296-018-3998-0

Matylda Sierakowska, Elżbieta Krajewska-Kułak + Show 3 more

Open Access

https://doi.org/10.1007/s00296-018-3998-0

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Abstract

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. The objective of this study was to determine the relationship between functional disability, health problems and perceived educational needs in people with systemic sclerosis (SSc). This was a cross-sectional analytic study conducted in six rheumatology centers in Poland. Functional disability was measured using HAQ-DI, and the magnitude of other health problems (pain, fatigue, intestinal problems, breathing problems, Raynaud’s phenomenon, finger ulcerations) was measured using 0–100 mm visual analogue scales. The educational needs were measured using the Polish version of the Educational Needs Assessment Tool (Pol-ENAT). Spearman’s correlation coefficient (rs) was used to report associations. The sample comprised 140 patients, 125 (89.28%) were women. They had a mean (SD) age of 54 (14.23) and disease duration of 11 (10.27) years. The median (IQR) HAQ-DI was 1.12 (0.62–1.62) and mean ENAT score was 71.54 (SD 27.72). Patients needed to know more about the disease process, self-help measures and managing pain. All health problems had significant correlations with the overall educational needs, pain, functional disability and fatigue having the highest rs = 0.359, p < 0.0001; rs = 0.314, p < 0.001 and rs = 0.270, p = 0.001, respectively. Health problems in people with SSc are associated with considerable educational needs; therefore, health professionals should take this into account when planning patient education. Group interventions should consider providing patient education related to disease process as a minimum.

Highlights

Systemic sclerosis (SSc), scleroderma, is a complex heterogeneous chronic condition with an autoimmune background, characterized by progressive fibrosis of the skin and internal organs, which lead to their failure, as well as abnormal renal morphology and dysfunction of blood vessels [1]
The educational needs are summarized as educational needs assessment tool (ENAT) domain scores and the degree of need is expressed as average score divided by the maximum possible score for that domain
Our results have shown that health problems especially, pain, disability, fatigue and disease severity, are associated with patients’ educational needs

Summary

Introduction

Systemic sclerosis (SSc), scleroderma, is a complex heterogeneous chronic condition with an autoimmune background, characterized by progressive fibrosis of the skin and internal organs, which lead to their failure, as well as abnormal renal morphology and dysfunction of blood vessels [1]. Scleroderma is considered a rare disease affecting between 31 and 88 per 1,000,000 population in the UK [2] and around 250 per 1,000,000 in Poland [3]. The most common is limited systemic sclerosis (approximately 2/3 of patients) and the other subset, diffuse systemic sclerosis is more severe and affects approximately 1/3 of all patients with SSc. Due to its multisystem involvement, the disease has severe physical and psychosocial impact affecting the patients’ quality of life [4]

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