disease questionnaire
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Author(s):  
В. Брушко ◽  
Р. Баннікова ◽  
А. Ковельська

Резюме. Правильний і обґрунтований вибір інструментальних методів оцінювання функціо-нального стану пацієнта є обов’язковою умовою адекватної фізичної терапії. Особливе місце цей аспект займає в системі нейрореабілітації пацієнтів з хворобою Паркінсона в Україні, оскільки на сьогодні кількість осіб, що потребують систематичної фізичної терапії, сягає 23 900 тис. Наростаюча маніфестація моторних і немоторних симптомів при хворобі Паркін-сона, від яких часто вирішальною мірою залежить тяжкість стану пацієнта, негативно впливає на якість його життя. Наявні функціональні порушення, які є самостійними проявами хвороби Паркінсона, вимагають специфічного підходу до комплексного інструментального досліджен-ня цих порушень для визначення диференційно-діагностичних критеріїв та оцінювання впливу фізіотерапевтичного втручання. Мета. Проаналізувати наявні інструменти оцінювання впливу фізичної терапії на осіб з хворобою Паркінсона. Методи. Теоретичний аналіз та узагальнення зарубіжних даних спеціальної науково-методичної літератури з питань застосування інстру-ментів оцінювання при хворобі Паркінсона та їх інформативності і надійності у фізичній терапії. Результати. Представлені дані свідчать, що ефективність запроваджених заходів фізичної терапії при хворобі Паркінсона залежить від правильно підібраних інструментів оцінювання, які дозволяють оцінити моторні і немоторні проблеми через призму життєдіяльності і якості життя пацієнта. Основним інструментом оцінювання для вирішення цього питання вважаєть-ся Уніфікована рейтингова шкала хвороби Паркінсона MDS-UPDRS, яка дозволяє об’єктивно оцінити моторні і немоторні аспекти життя пацієнта і його рухову активність. Оскільки наявні моторні й аксіальні рухові порушення негативно впливають на повсякденну функціональну активність пацієнта, для верифікації цих порушень пропонують використовувати тест для оці-нювання часу підйому і ходьби (Timed Up and Go (TUG)); тест з подвійним завданням (Dual-Task TUG (TUG-DT)) та шкалу рівноваги Берга (Berg Balance Scale (BBS)). Але виходячи з того, що ці тести недостатньо чутливі до невеликих змін у рухливості при хворобі Паркінсона, особливо на середніх і пізніх стадіях захворювання, їх доцільно поєднувати з одним із кількісних тестів для оцінювання ходьби: 10-метровим тестом ходьби (10 Meter Walk Test (10MW)) та 6-хвилинним тестом ходьби (Six Minute Walk Distance (6MWT)). Поняття «життєдіяльність» включає в себе не тільки переміщення, її оцінювання має бути доповнено аналізом ступеня впливу наявних по-рушень на повсякденну діяльність, тобто на якість життя пацієнта. Найбільш інформативними інструментами для проведення цього аналізу є універсальні і специфічні при хворобі Паркінсо-на опитувальники з метою оцінювання стану здоров’я SF-36, EuroQOL (EQ-5D) і PDQ-39 (The Parkinson’s Disease Questionnaire). Результати аналізу та узагальнення даних науково-мето-дичної літератури дають підставу встановити, що маніфестація порушень та їх варіабельність при хворобі Паркінсона стають серйозною проблемою у досягненні кінцевого результату за-проваджених заходів фізичної терапії на всіх стадіях захворювання. Використання в комплексі стандартної експертно-реабілітаційної діагностики спеціальних інструментів оцінювання дозволяє об’єктивізувати оцінювання клінічної інформації та стимулює розроблення особисто-орієнтованих реабілітаційних стратегій із застосуванням заходів фізичної терапії, спрямованих на покращення якості життя пацієнтів з хворобою Паркінсона. Ключові слова: хвороба Паркінсона, фізична терапія, якість життя, інструменти оцінювання, достовірність, надійність, валідність.


2021 ◽  
Author(s):  
Jacqueline Ferreira ◽  
Ana C. Magalhães ◽  
Pedro Bem-Haja ◽  
Laura Alho ◽  
Carlos F. Silva ◽  
...  

Abstract Background Individual differences in one’s perceived vulnerability to disease are implicated in psychological distress, social and behavioral disease avoidance phenomena. The Perceived Vulnerability to Disease Questionnaire (PVD) is the most extensively used measure when it comes to assessing subjective vulnerability to infectious diseases. However, this measure is not yet accessible to the Portuguese population. The present study examined the psychometric properties of the PVD with 136 Portuguese participants. Methods Factorial, convergent and discriminant validity (of both the scale and between each factor), and reliability analysis were assessed. Results A modified bifactorial model, comprised of Perceived Infectability and Germ Aversion factors, was obtained, with acceptable goodness-of-fit indices, adequate convergent and discriminant validity, and good internal consistencies. Conclusions Overall, the 10-items European-Portuguese PVD appears to be a reliable and valid measure of one’s perceived vulnerability to disease, with potential relevance for application in both research and clinical practice pertaining to disease-avoidance processes.


2021 ◽  
pp. 2101790
Author(s):  
Surinder S. Birring ◽  
Donald M. Bushnell ◽  
Michael Baldwin ◽  
Heiko Mueller ◽  
Natalia Male ◽  
...  

There is a lack of fully validated patient-reported outcome measures for progressive fibrosing interstitial lung disease (PF-ILD). We aimed to validate the King's Brief Interstitial Lung Disease questionnaire (KBILD) for measuring health-related quality of life (HRQoL) in these patients. We also estimated the meaningful change threshold for interpreting stabilisation of HRQoL as a clinical endpoint in PF-ILD, where the current goal of treatment is disease stability and slowing progression. This analysis evaluated data from 663 patients with PF-ILD other than idiopathic pulmonary fibrosis from the INBUILD trial. Validation of the measurement properties was assessed for internal consistency, test-retest reliability, construct validity, known-groups validity, and responsiveness. We calculated meaningful change thresholds for treatment response using anchor-based (within-patient) and distribution-based methods. The KBILD had strong internal consistency (Cronbach alpha was 0.94 for total score, 0.88 for KBILD domain breathlessness and activities, 0.91 for psychological and 0.79 for chest symptoms). Test-retest reliability intraclass correlation coefficient was 0.74 for KBILD total score. The KBILD demonstrated weak correlations with forced vital capacity (FVC)% predicted. Known-groups validity showed significant differences in KBILD scores for patient groups with different disease severity based on use of supplemental oxygen or baseline FVC% predicted (<70 or >70%). We estimated a meaningful change threshold of ≥–2 for the KBILD total score for defining patients who remain stable/improved versus those with progressive deterioration. Our results validate the KBILD as a tool for assessing HRQoL in patients with PF-ILD and set a meaningful change threshold of ≥–2 for KBILD total score.


2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Dajuan Sun ◽  
Lili Chi ◽  
Jiahui Liu ◽  
Junwei Liang ◽  
Song Guo ◽  
...  

Abstract Background This study aimed to evaluate the psychometric properties of the Chinese version of the Short Inflammatory Bowel Disease Questionnaire (C-SIBDQ), and its measurement invariance across sex in Chinese patients with inflammatory bowel disease (IBD). Methods Between September 2018 and July 2021, 284 patients with IBD were recruited from a spleen and stomach clinic. All participants completed the C-SIBDQ, 12-item Short-Form Health Survey (SF-12), nine-item Patient Health Questionnaire Depression Scale (PHQ-9), and the seven-item Generalized Anxiety Disorder Scale (GAD-7). Floor and ceiling effects were evaluated by testing frequencies and composition ratios for the minimum and maximum C-SIBDQ scores. Exploratory and confirmatory factor analysis (CFA) were used to evaluate the C-SIBDQ’s factor structure and construct validity. Convergent validity was evaluated through examining bivariate correlations between the C-SIBDQ and the SF-12, PHQ-9, and GAD-7. Internal consistency reliability and retest reliability were evaluated by respectively calculating the Cronbach’s α and the intraclass correlation coefficient (ICC) among a subsample (n = 79) after 2 weeks. The measurement invariance across sex was evaluated through multiple-group CFA. Results The C-SIBDQ scores showed no floor or ceiling effects and had a single-factor structure and good convergent validity, with significant correlations with the SF-12, PHQ-9 and GAD-7. Good internal consistency (Cronbach’s α = 0.920) and test–retest reliability (ICC = 959) were observed. The C-SIBDQ also showed measurement invariance across sex, and females showed higher C-SIBDQ scores than males. Conclusions The C-SIBDQ has high reliability, validity, and stability across sex, and can be used in clinics to assess the health-related quality of life of patients with IBD.


2021 ◽  
Vol 12 ◽  
Author(s):  
Junqiang Yan ◽  
Hongxia Ma ◽  
Anran Liu ◽  
Jiarui Huang ◽  
Jiannan Wu ◽  
...  

Objective: The effects of rotigotine transdermal patch (RTG) on the neuropsychiatric symptoms of Parkinson's disease (PD) outcomes remain controversial. The aim of this review was to determine the efficacy and safety of RTG on the neuropsychiatric symptoms of PD.Methods: In this systematic review and meta-analysis, PubMed, Cochrane Library, EMBASE, and Web of Science were searched for randomized controlled trials comparing RTG and placebo in PD up to May 10, 2021. We analyzed the data using Review Manager 5.2 software. The quality of evidence was assessed using the Grading of Recommendations Assessment, Development, and Evaluation Approach. In order to avoid false-positive results caused by random error, we use TSA software for trial sequential analysis (TSA).Results: We included 10 studies (1,844 patients). The meta-analysis showed that, compared with placebo, RTG can significantly improve the scores for Apathy Scale (MD = −1.68, 95% confidence interval, CI: −2.74 to −0.62, P = 0.002; moderate certainty), Beck Depression Inventory-II (MD = −1.19, 95% CI: −2.26 to −0.11, P = 0.03; moderate certainty), the Non-Motor Symptoms Scale (MD = −3. 66, 95% CI: −4. 30 to −3.01, P &lt; 0.00001; moderate certainty), the sleep/fatigue domains of the Parkinson's Disease Non-motor Symptom Assessment Scale (MD = −2.03, 95% CI: −3.08 to −0.98, P = 0.0001; moderate certainty), the mood/apathy domains of the Non-motor Symptom Scale (MD = −2.48, 95% CI: −4.07 to −0.89, P = 0.002; high certainty), the eight-item Parkinson's Disease Questionnaire (MD = −4. 93, 95% CI: −6.79 to −3.07, P &lt; 0.00001; moderate certainty), and the 39-item Parkinson's Disease Questionnaire (MD = −3.52, 95% CI: −5.25 to −1.79, P &lt; 0.0001; high certainty). However, there was no statistically significant difference on the Snaith–Hamilton Pleasure Scale (MD = −0.12, 95% CI: −0.58 to 0.34, P = 0.61). Our results showed that RTG exerts a positive effect on sleep. According to the TSA, the results implied that, except for the Beck Depression Inventory-II, conclusive evidence have been obtained in the RTG group. It has been proven in our meta-analysis that rotigotine has good safety and tolerability.Conclusions: RTG can effectively improve the neuropsychiatric symptoms, sleep quality, and quality of life in patients with PD.


2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Birgith Engelst Grove ◽  
Liv Marit Valen Schougaard ◽  
Per Ramløv Ivarsen ◽  
Derek Kyte ◽  
Niels Henrik Hjollund ◽  
...  

Abstract Background Patient-reported outcome measures are increasingly used by clinicians to support communication in telephone- or face-to-face consultations with patients. A renal disease questionnaire has been developed, but not sufficiently evaluated through clinimetrics in clinical setting. Hence, we aimed to evaluate the content validity, construct validity and the test–retest reliability of a renal disease questionnaire to be used for clinical decision-making. Methods A content, construct validity and test–retest reliability study was conducted in 3 nephrology outpatient clinics in Central Denmark Region, Denmark. Content validity (face validity, comprehensibility and relevance) was assessed among 8 patients and 6 clinicians. Reliability was assessed by asking outpatients with chronic kidney disease to complete the questionnaire twice. Reliability was assessed by kappa statistics and agreement by percentage. Construct validity was determined using 4 a priori defined hypotheses and comparing 2 known groups. Results Five new domains emerged, 6 items were rephrased and 3 items were removed following the content validity test. A total of 160 patients completed the questionnaire with median 8 days (IQR 2 days) between assessments. The test–retest reliability parameters of the single items in the questionnaire were substantial to almost perfect as all the observed weighted kappa values ranged from 0.61 to 0.91, 95% CI (0.34 to 0.95). In total, 61% of the single items showed almost perfect agreement. In total, 3 of the 4 hypotheses were accepted and 44% of the items showed satisfying known-group discriminative validity. Conclusion A renal disease questionnaire used for clinical decision-making in outpatient follow-up showed acceptable content validity and substantial to almost perfect reliability. Sufficient construct validity was not established. Incorporating the questionnaire into routine clinical practice may improve the evaluation of disease burden in patients with chronic kidney disease. Plain English summary We ask patients with chronic kidney disease (CKD) in Central Region Denmark to complete a questionnaire before each outpatient visit. The answers they provide are used to support communication with their health care provider. A questionnaire requires testing to ensure it can accurately capture important information about patient’s symptoms and quality of life. When questionnaires are used to support communication between patients and health care professionals, they need to have good measurement properties. This means they need to be: (1) trustworthy, (2) relevant to a patient’s health condition, (3) consistent and produce stable results every time. We explored the measurement properties of a questionnaire designed to be used in the face-to face outpatient visits for patients with CKD. We found that the questionnaire captured consistent and stable results. Using this questionnaire may help health care professionals to assess the patients´ burden of symptoms with a more patient-centered approach. Potentially, the use of the questionnaire will increase the patients´ ability to cope with their symptoms and strengthen patients´ involvement in the clinical decisions concerning their treatment.


2021 ◽  
Vol 505 (2) ◽  
Author(s):  
Đào Thùy Dương ◽  
Nguyễn Thanh Bình

Mục tiêu: Mô tả đặc điểm lâm sàng và chất lượng cuộc sống (Quality of Life – QoL) của bệnh nhân Parkinson thể cứng. Đối tượng và phương pháp nghiên cứu: Nghiên cứu mô tả cắt ngang trên 60 bệnh nhân Parkinson thể cứng tại Bệnh viện Lão khoa Trung Ương từ tháng 08 năm 2020 đến tháng 06 năm 2021, chẩn đoán bệnh Parkinson theo tiêu chuẩn của Ngân hàng não hội Parkinson Vương quốc Anh (UKPDSBB/United Kingdom Parkinson’s Disease Society Brain Bank), tiêu chuẩn thể cứng theo Thang điểm đánh giá bệnh nhân Parkinson (UPDRS), chất lượng cuộc sống bệnh nhân theo Thang điểm đánh giá chất lượng cuộc sống bệnh nhân Parkinson PDQ-39 (Parkinson’s Disease Questionnaire). Kết quả:Tuổi trung bình của đối tượng nghiên cứu là 68,3±8, tỉ lệ nam 56,7% và nữ là 43,3%. Giảm vận động là triệu chứng khởi phát về vận động thường gặp nhất (93.3%), khởi phát ngoài vận động thường gặp là đau vai gáy (56,7%) và rối loạn giấc ngủ (43,3%). Đối tượng nghiên cứu thuộc giai đoạn III chiếm tỷ lệ cao nhất là 40%. Chất lượng cuộc sống của bệnh nhân Parkinson thể cứng ở lĩnh vực khả năng đi lại và hoạt động hằng ngày bị ảnh hưởng nhiều nhất với điểm trung bình theo PDQ-39 là 46,0±30,0 và 49,4±30,5. Nhóm bệnh nhân ở giai đoạn trung bình - nặng (giai đoạn III,IV,V), nhómcó thời gian mắc bệnh trên 5 năm hoặc những bệnh nhân trên 60 tuổi đều có chất lượng cuộc sống tồi tệ hơn so với nhóm còn lại, sự khác biệt có ý nghĩa thống kê với p < 0,05. Kết luận: Chất lượng cuộc sống của bệnh nhân Parkinson thể cứng bị ảnh hưởng nhiều, vì vậy rất cần sự quan tâm, chăm sóc toàn diện từ đội ngũ y tế và gia đình.


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