Jakość życia w przewlekłych chorobach reumatycznych – uwarunkowania społeczne, psychologiczne i medyczne oraz metody pomiaru

Badania jakości życia uwarunkowanej stanem zdro­wia (HRQoL, Health Related Quality of Life) są sze­roko stosowane w praktyce medycznej i badaniach klinicznych. Wykorzystując wystandaryzowane na­rzędzia badawcze, w ocenie uwzględnia się wiele czynników zależnych od choroby i niezależnych, takich jak aspekty zdrowia fizycznego, sprawności ruchowej, stanu psychicznego, sytuacji społecznej czy materialnej chorego. Celem pracy jest przedstawienie problematyki ja­kości życia, wychodząc od koncepcji wywodzą­cych się z nauk społecznych, po przedstawienie założeń teoretycznych HRQoL i dostępnych narzę­dzi pomiaru, ze szczególnym zwróceniem uwagi na problematykę jakości życia w przewlekłych choro­bach reumatycznych. Metodą wykorzystaną w pracy jest przegląd i analiza piśmiennictwa poświęconego omawianej tematyce. Badania jakości życia w medycynie są wyrazem cało­ściowego podejścia do złożonych problemów chorego. Ukazują punkt widzenia pacjenta wyrażony w subiek­tywnej ocenie. Wskazują na ograniczenia w funkcjono­waniu spowodowane chorobą, umożliwiając identyfi­kację najważniejszych problemów chorego. Ustalenie priorytetów i preferencji pacjenta może wpływać na właściwe decyzje terapeutyczne

Автоматизация работы автогрейдеров система «Профиль-30»

© 2018, The Author(s). 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 0–100mm 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

Ocena wiedzy pacjentów na temat cukrzycy typu 2 jako niezbędny element terapii

INTRODUCTION. Education of diabetic patients is a key component of diabetes management which significantly influences the risk of acute and longterm diabetic complications. The aim of the study was to determine the patients&#8217; knowledge of diabetes, to develop a health education plan and to establish what methods and forms of education would be more suitable for patients. MATERIAL AND METHODS. The study included 100 type 2 diabetic patients of Municipal Diabetes Center of Bialystok. Authors used an anonymous questionnaire as an assessment tool. RESULTS. Almost 37% of patients did not recognize the symptoms of hypoglycemia, and 31% did not know the risk factors of hypoglycemia. 52% of patients lacked sufficient knowledge about prevention of diabetic foot. More than 90% of participants confirmed that education improves the patients&#8217; mood and helps them to become more motivated to manage diabetes. CONCLUSIONS. The study demonstrated that the patients&#8217; knowledge about self-control and self-management is insufficient and health education is the key activity to increase awareness of the possibility of patients&#8217; condition and quality of life improvement. The aim of education is to provide patients with the knowledge of their illness, self-care skills, and psycho-emotional support and motivation to cope with practical and emotional problems. Methods and forms of health education should be adjusted to individual needs of each patient.WSTĘP. Edukacja chorych na cukrzycę stanowi istotne uzupełnienie leczenia i znacząco wpływa na obniżenie ryzyka ostrych oraz późnych powikłań cukrzycy. Celem pracy było określenie wiedzy pacjentów na temat cukrzycy, zaplanowanie edukacji zdrowotnej oraz ustalenie, jakie metody i formy szkolenia najbardziej odpowiadają chorym. MATERIAŁ I METODY. Badaniem objęto 100 chorych na cukrzycę typu 2 leczonych w Miejskim Ośrodku Diabetologicznym w Białymstoku. Narzędziem badawczym była anonimowa ankieta. WYNIKI. Prawie 37% ankietowanych nie znało objawów hiperglikemii, a 31% przyczyn hipoglikemii. Istotne braki w wiedzy na temat profilaktyki stopy cukrzycowej stwierdzono u 52% respondentów. Powyżej 90% badanych potwierdziło, że edukacja pozytywnie wpływa na samopoczucie chorych, a także zwiększa motywację do leczenia. WNIOSKI. Wykazano, że u chorych poziom wiedzy dotyczącej samokontroli i samoopieki jest niewystarczający, a edukacja zdrowotna jest podstawowym działaniem zwiększającym świadomość na temat możliwości poprawy zdrowia i jakości życia. Działania edukacyjne muszą nie tylko umożliwiać chorym zdobycie wiedzy, umiejętności oraz zwiększać motywację psychoemocjonalną, ale także powinny kreować nowe wartości osobowe i moralne w walce z chorobą. Metody i formy edukacji zdrowotnej należy dostosować do indywidualnych potrzeb każdego pacjenta

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

© 2016, Institute of Agricultural Medicine. All rights reserved. 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 (

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

© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. 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

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

© 2019, The Author(s). 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 (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. 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

Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis:a mixed-methods study with patients' perspectives

OBJECTIVES: To explore patients' agreement and reasons for agreement or disagreement with the EULAR recommendations for patient education (PE) for people with inflammatory arthritis (IA). METHODS: This mixed-method survey collected data using snowball sampling. The survey had been translated into 20 languages by local healthcare professionals, researchers and patient research partners. It explored the degree to which patients with IA agreed with each recommendation for PE (0=do not agree at all and 10=agree completely) and their rationale for their agreement level in free text questions. Descriptive statistics summarised participants' demographics and agreement levels. Qualitative content analysis was used to analyse the free text data. Sixteen subcategories were developed, describing the reasons for agreement or disagreement with the recommendations, which constituted the categories. RESULTS: The sample comprised 2779 participants (79% female), with a mean (SD) age 55.1 (13.1) years and disease duration 17.1 (13.3) years. Participants strongly agreed with most recommendations (median 10 (IQR: 9-10) for most recommendations). Reasons for agreement with the recommendations included the benefit of using PE to facilitate collaborative care and shared decision making, the value of flexible and tailored PE, and the value of gaining support from other patients. Reasons for disagreement included lack of resources for PE, not wanting information to be tailored by healthcare professionals and a reluctance to use telephone-based PE. CONCLUSION: The EULAR recommendations for PE have been disseminated among patients with IA. Overall, agreement levels were very high, suggesting that they reflect patients' preferences for engaging in collaborative clinical care and using PE to facilitate and supplement their own understanding of IA. Reasons for not completely agreeing with the recommendations can inform implementation strategies and education of healthcare professionals

Assessing acceptability and identifying barriers and facilitators to implementation of the EULAR recommendations for patient education in inflammatory arthritis: a mixed-methods study with rheumatology professionals in 23 European and Asian countries

Objectives: To disseminate and assess the level of acceptability and applicability of the EULAR recommendations for patient education among rheumatology professionals across Europe and 3 Asian countries, and identify potential barriers and facilitators to their application.Methods: A parallel convergent mixed methods research design with an inductive approach was used. A web-based survey, available in 20 different languages, was distributed to health professionals by non-probability sampling. The level of agreement and applicability of each recommendation was assessed by (0 to 10) rating scales. Barriers and facilitators to implementation were assessed using free-text responses. Quantitative data were analysed descriptively and qualitative data by content analysis and presented in 16 categories supported by quotes. Results: A total of 1159 participants completed the survey; 852 (73.5%) were women. Most of the professionals were nurses (n=487), rheumatologists (n=320), physiotherapists (n=158). For all recommendations, the level of agreement was high but applicability was lower. The four most common barriers to application were: lack of time, lack of training in how to provide patient education, not having enough staff to perform this task and lack of evaluation tools. The most common facilitators were: tailoring patient education to individual patients, using group education, linking patient education with diagnosis and treatment, and inviting patients to provide feedback on patient education delivery.Conclusions: This project has disseminated the EULAR recommendations for patient education to health professionals across 23 countries. Potential barriers to their application were identified and some are amenable to change, namely training patient education providers and developing evaluation tools

Jakość życia w przewlekłych chorobach reumatycznych — uwarunkowania społeczne, psychologiczne i medyczne oraz metody pomiaru

Badania jakości życia uwarunkowanej stanem zdro­wia (HRQoL, Health Related Quality of Life) są sze­roko stosowane w praktyce medycznej i badaniach klinicznych. Wykorzystując wystandaryzowane na­rzędzia badawcze, w ocenie uwzględnia się wiele czynników zależnych od choroby i niezależnych, takich jak aspekty zdrowia fizycznego, sprawności ruchowej, stanu psychicznego, sytuacji społecznej czy materialnej chorego. Celem pracy jest przedstawienie problematyki ja­kości życia, wychodząc od koncepcji wywodzą­cych się z nauk społecznych, po przedstawienie założeń teoretycznych HRQoL i dostępnych narzę­dzi pomiaru, ze szczególnym zwróceniem uwagi na problematykę jakości życia w przewlekłych choro­bach reumatycznych. Metodą wykorzystaną w pracy jest przegląd i analiza piśmiennictwa poświęconego omawianej tematyce. Badania jakości życia w medycynie są wyrazem cało­ściowego podejścia do złożonych problemów chorego. Ukazują punkt widzenia pacjenta wyrażony w subiek­tywnej ocenie. Wskazują na ograniczenia w funkcjono­waniu spowodowane chorobą, umożliwiając identyfi­kację najważniejszych problemów chorego. Ustalenie priorytetów i preferencji pacjenta może wpływać na właściwe decyzje terapeutyczne