Factors associated with quality of life in systemic sclerosis: a cross-sectional study.

INTRODUCTION: Systemic sclerosis (SSc) is a connective tissue disease characterized by progressive fibrosis of the skin and internal organs, leading to their failure and disturbances in the morphology and function of blood vessels. The disease affects people in different ways, and identifying how the difficulties and limitations are related to quality of life may contribute to designing helpful interventions. The aim of this study was to identify factors associated with quality of life in people with SSc. METHODS: This was a cross-sectional study conducted in 11 rheumatic centres in Poland. Patients diagnosed with SSc were included. Quality of life was measured using the SSc Quality of Life Questionnaire (SScQoL). The following candidate factors were entered in preliminary multivariable analysis: age, place of residence, marital status, occupational status, disease type, disease duration, pain, fatigue, intestinal problems, breathing problems, Raynaud's symptoms, finger ulcerations, disease severity, functional disability, anxiety and depression. Factors that achieved statistical significance at the 10% level were then entered into a final multivariable model. Factors achieving statistical significance at the 5% level in the final model were considered to be associated with quality of life in SSc. RESULTS: In total, 231 participants were included. Mean age (SD) was 55.82 (12.55) years, disease duration 8.39 (8.18) years and 198 (85.7%) were women. Factors associated with quality of life in SSc were functional disability (ß = 2.854, p < 0.001) and anxiety (ß = 0.404, p < 0.001). This model with two factors (functional disability and anxiety) explained 56.7% of the variance in patients with diffuse SSc and 73.2% in those with localized SSc. CONCLUSIONS: Functional disability and anxiety are significantly associated with quality of life in SSc. Interventions aimed at improving either of these factors may contribute towards improving the quality of life of people with SSc.

Common measure of quality of life for people with systemic sclerosis across seven European countries: a cross-sectional study.

OBJECTIVES: The aim of this study was to adapt the Systemic Sclerosis Quality of Life Questionnaire (SScQoL) into six European cultures and validate it as a common measure of quality of life in systemic sclerosis (SSc). METHODS: This was a seven-country (Germany, France, Italy, Poland, Spain, Sweden and UK) cross-sectional study. A forward-backward translation process was used to adapt the English SScQoL into target languages. SScQoL was completed by patients with SSc, then data were validated against the Rasch model. To correct local response dependency, items were grouped into the following subscales: function, emotion, sleep, social and pain and reanalysed for fit to the model, unidimensionality and cross-cultural equivalence. RESULTS: The adaptation of the SScQoL was seamless in all countries except Germany. Cross-cultural validation included 1080 patients with a mean age 58.0 years (SD 13.9) and 87% were women. Local dependency was evident in individual country data. Grouping items into testlets corrected the local dependency in most country specific data. Fit to the model, reliability and unidimensionality was achieved in six-country data after cross-cultural adjustment for Italy in the social subscale. The SScQoL was then calibrated into an interval level scale. CONCLUSION: The individual SScQoL items have translated well into five languages and overall, the scale maintained its construct validity, working well as a five-subscale questionnaire. Measures of quality of life in SSc can be directly compared across five countries (France, Poland Spain, Sweden and UK). Data from Italy are also comparable with the other five countries although require an adjustment.

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

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.

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

OBJECTIVES: Chronic 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 METHODS: This 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. RESULTS: The 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). CONCLUSIONS: All 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.

Developing the Polish Educational Needs Assessment Tool (Pol-ENAT) in rheumatoid arthritis and systemic sclerosis: a cross-cultural validation study using Rasch analysis.

OBJECTIVES: To undertake cross-cultural adaptation and validation of the educational needs assessment tool (ENAT) for use with people with rheumatoid arthritis (RA) and systemic sclerosis (SSc) in Poland. METHODS: The study involved two main phases: (1) cross-cultural adaptation of the ENAT from English into Polish and (2) Cross-cultural validation of Polish Educational Needs Assessment Tool (Pol-ENAT). The first phase followed an established process of cross-cultural adaptation of self-report measures. The second phase involved completion of the Pol-ENAT by patients and subjecting the data to Rasch analysis to assess the construct validity, unidimensionality, internal consistency and cross-cultural invariance. RESULTS: An adequate conceptual equivalence was achieved following the adaptation process. The dataset for validation comprised a total of 278 patients, 237 (85.3 %) of which were female. In each disease group (145, RA and 133, SSc), the 7 domains of the Pol-ENAT were found to fit the Rasch model, X (2)(df) = 16.953(14), p = 0.259 and 8.132(14), p = 0.882 for RA and SSc, respectively. Internal consistency of the Pol-ENAT was high (patient separation index = 0.85 and 0.89 for SSc and RA, respectively), and unidimensionality was confirmed. Cross-cultural differential item functioning (DIF) was detected in some subscales, and DIF-adjusted conversion tables were calibrated to enable cross-cultural comparison of data between Poland and the UK. CONCLUSION: Using a standard process in cross-cultural adaptation, conceptual equivalence was achieved between the original (UK) ENAT and the adapted Pol-ENAT. Fit to the Rasch model, confirmed that the construct validity, unidimensionality and internal consistency of the ENAT have been preserved.

Assessment of education requirements for patients with rheumatoid arthritis, based on the Polish version of the Educational Needs Assessment Tool (Pol-ENAT), in the light of some health problems - A cross-sectional study.

INTRODUCTION: Patients with chronic rheumatoid arthritis (RA) need advice in order to face the problems of everyday life, as well as suffering associated with the disease. Health professionals should attempt to raise the level of resourcefulness and independence of the patient. OBJECTIVE: To assess the relationship between the deficit of knowledge about RA and the degree of pain, fatigue, morning stiffness, assessment of disease activity as well as functional efficiency. MATERIALS AND METHOD: The study was conducted on 277 patients with RA in 7 rheumatologic centres in Poland. The method applied was the questionnaire Pol-ENAT (0-156); HAQ DI (0-3); analog scales (0-100). RESULTS: Mean (SD) age was 53.28 (13.01) and disease duration 13.70 (10.63) years. The mean (SD) value was 54.93 (23.17) for pain, 52.97 (21.98) for fatigue, 48.28 (24.76) for morning stiffness (0-100 mm). HAQ DI was 1.40 (0.66), with an upward trend with duration of disease (p<0.001). There was a positive correlation between the demand for knowledge about the movement (r=0.194; p=0.001), self-care (r=0.134; p=0.026), assistance/support(r =0.163; p=0.006) and morning stiffness experienced. There was a negative correlation between the need for knowledge concerning managing pain, feelings and the arthritis process and daily ability assessed with HAQ DI. CONCLUSIONS: The study shows that health education should be targeted at young patients with early RA. In the case of the severity of morning joints stiffness, there is a need to increase knowledge about the methods of mobility aids, self-care and the possibility of obtaining support.