IntroductionSystemic 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.MethodsThis 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.ResultsIn 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 (β = 2.854, p < 0.001) and anxiety (β = 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.ConclusionsFunctional 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.Electronic supplementary materialThe online version of this article (10.1007/s11136-019-02284-9) contains supplementary material, which is available to authorized users.

BackgroundRheumatic diseases, irrespective of etiology and clinical course, influence different areas of a patient’s life. Adapting to disability and limitations caused by an illness is very difficult for many patients. The main goal of a therapeutic procedure should be improvement of health-related quality of life (QoL).ObjectiveEvaluation of the factors that influence the QoL that are conditioned by the state of health of patients with osteoarthritis (OA) and rheumatoid arthritis (RA).MethodsThe study group consisted of 198 patients diagnosed with OA, according to the American College of Rheumatology criteria (1988), and 100 patients diagnosed with RA, according to the American College of Rheumatology criteria (2010). A diagnostic survey using visual analog scale of pain, health assessment questionnaire disability index, and 36-item short form health survey were used in this study.ResultsThe average age of patients with OA was 59.16 (±15.87) years and patients with RA was 55.22 (±14.87) years. The average duration of illness examined for OA was 5.5 (±4.32) years, whereas for RA, it was slightly more at 6.8 (±5.21) years. Overall the QoL in both study groups was of medium level. Among patients with OA and RA, lower evaluation of QoL was mainly affected by age (OA – physical sphere [PCS] rs=−0.177, P<0.012; MCS rs=−0.185, P=0.008; RA – PCS rs=−0.234, P=0.019; MCS rs=−0.208, P=0.038), the level of physical disability (OA – PCS rp=−0.532, P<0.001; MCS rs=−0.467, P<0.001; RA – PCS rp=−0.326, P<0.001; MCS rs=−0.229, P<0.001), and pain (OA – PCS rp=−0.425, P<0.001; mental sphere/mental functioning (MCS) rs=−0.359, P<0.001; RA – PCS rp=−0.313, P<0.001; MCS rp=−0.128, P<0.001).ConclusionPatients with OA, despite their average older age, had a higher evaluated QoL than patients with RA. Overall QoL in terms of mental functioning in both rheumatic diseases was assessed at a higher level than in the area of physical functioning.

ObjectivesThe 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).MethodsThis 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.ResultsThe 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.ConclusionThe 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.

ObjectiveThe aim of the study was to evaluate the usefulness of the Polish version of the Care Dependency Scale (CDS) in predicting care needs and health risks of elderly patients admitted to a geriatric unit.MethodsThis was a cross-sectional study of 200 geriatric patients aged ≥60 years, chronologically admitted to a geriatrics unit in Poland. The study was carried out using the Polish version of the CDS questionnaire to evaluate biopsychosocial needs and the level of care dependency.ResultsThe mean age of the participating geriatric patients was 81.8±6.6. The mean result of the sum of the CDS index for all the participants was 55.3±15.1. Detailed analysis of the results of evaluation of the respondents’ functional condition showed statistically significant differences in the levels of care dependency. Evaluation of the patients’ physical performance in terms of the ability to do basic activities of daily living (ADL) and instrumental ADL (I-ADL) showed statistically significant differences between the levels of care dependency. Patients with high dependency were more often prone to pressure ulcers – 13.1±3.3, falls (87.2%), poorer emotional state – 6.9±3.6, mental function – 5.1±2.8, and more often problems with locomotion, vision, and hearing. The results showed that locomotive disability, depression, advanced age, and problem with vision and hearing are connected with increasing care dependency.ConclusionCDS evaluation of each admitted geriatric patient enables us to predict the care needs and health risks that need to be reduced and the disease states to be improved. CDS evaluation should be accompanied by the use of other instruments and assessments to evaluate pressure ulcer risk, fall risk, and actions toward the improvement of subjective well-being, as well as correction of vision and hearing problems where possible and assistive devices for locomotion.

ObjectivesTo 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.MethodsThe 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.ResultsAn 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, X2(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.ConclusionUsing 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.Electronic supplementary materialThe online version of this article (doi:10.1007/s11136-014-0805-6) contains supplementary material, which is available to authorized users.