Lege Artis Medicinae

[The validation of a disease specific quality of life instrument in patients with psoriatic arthritis]

LOVAS Kornélia1, KOÓ Éva2, WHALLEY Diane, MCKENNA Stephen, MEADS David3, KALÓ Zoltán4

JULY 20, 2002

Lege Artis Medicinae - 2002;12(06-07)

[Measuring quality of life (QoL) has a growing importance in the field of health technology assessment. It is especially true for chronic diseases, such as psoriatic arthritis, which has significant impact on patients’ quality of life through the intensity of symptoms and the duration of the disease. The quality of life measurement can only be reliable and valid if an appropriate instrument is used. One of the most critical elements of the validity of quality of life intruments is the method used for adapting the questionnaire to foreign languages. Authors present their results and experience in the Hungarian adaptation of the Psoriatic Arthritis Quality of Life (PSAQoL) questionnaire.]

AFFILIATIONS

  1. Semmelweis Egyetem, Egyetemi Gyógyszertár és Gyógyszerügyi Szervezési Intézet, Budapest
  2. Budai Irgalmasrendi Kórház, Budapest
  3. Novartis Pharma AG, Basel
  4. Galen Research, Manchester, Egyesült Királyság

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[Background - The deleterious effect of primary headaches on the sufferers’ quality of life (QOL) has been abundantly documented using both generic and headache-specific instruments. The currently used questionnaires focus on a limited number of factors and therefore may not be sensitive enough to detect the effect of headache type and headache characteristics on QOL, despite the obvious clinical differences. We have devised a comprehensive questionnaire that may be more sensitive to the burden of headache. Objective - To assess the psychometric properties of the new questionnaire on a group of migraineurs. Patients and method - We studied 117 migraineurs who completed the validated Hungarian version of the SF-36 generic QOL measure and our new, 25-item questionnaire. Reliability was assessed by internal consistency, measured by Cronbach’s a of all items. Content validity was exam- ined by calculating the correlation of the items with subscales of the SF-36 measure. The correlation of the patients’ migraine characteristics with the questionnaire’s items was used to assess criterion validity. Results - The questionnaire was quick and easy to administer. The questionnaire demonstrated good reliability, with Cronbach’s alpha being 0.893. Content validity was adequate; most “physical” items of the new questionnaire showed significant correlations with the bodily pain and role physical SF-36 subscales and most “psychical” and “social” items were correlated with mental health and social functioning SF-36 subscales. Criterion validity was adequate, with headache severity being correlated with most of the items. Discussion - In this study the new headache-specific quality of life instrument showed adequate psychometric properties.]

Clinical Neuroscience

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[Background – The recently published “EarlyStim” study demonstrated that deep brain stimulation (DBS) for the treatment of Parkinson’s disease (PD) with early fluctuations is superior to the optimal pharmacological treatment in improving the quality of life and motor symptoms, and preserving sociocultural position. Our retrospective investigation aimed to evaluate if DBS therapy was able to preserve the working capabilities of our patients. Methods – We reviewed the data of 39 young (<60 years-old) PD patients who underwent subthalamic DBS implantation at University of Pécs and had at least two years follow-up. Patients were categorized into two groups based on their working capabilities: Patients with active job (“Job+” group, n=15) and retired patients (without active job, “Job-” group, n=24). Severity of motor symptoms (UPDRS part 3), quality of life (EQ-5D) and presence of active job were evaluated one and two years after the operation. Results – As far as the severity of motor symptoms were concerned, similar (approximately 50%) improvement was achieved in both groups. However, the postoperative quality of life was significantly better in the Job+ group. Majority (12/15, 80%) of Job+ group members were able to preserve their job two years after the operation. However, only a minimal portion (1/24, 4.2%) of the Job- group members was able to return to the world of active employees (p<0.01, McNemar test). Conclusion – Although our retrospective study has several limitations, our results fit well with the conclusions of “EarlyStim” study. Both of them suggest that with optimal timing of DBS implantation we may preserve the working capabilities of our patients.]

Lege Artis Medicinae

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[Introduction - Cluster headache (CH), which affects 0.1% of the population, is one of the most painful human conditions: despite adequate treatment, the frequent and severe headaches cause a significant burden to the patients. According to a small number of previous studies, CH has a serious negative effect on the sufferers’ quality of life (QOL). In the current study, we set out to examine the quality of life of the CH patients attending our outpatient service between 2013 and 2016, using generic and headache-specific QOL instruments. Methods - A total of 42 CH patients (16 females and 26 males; mean age: 39.1±13.5 years) completed the SF-36 generic QOL questionnaire and the headache- specific CHQQ questionnaire (Comprehensive Headache- related Quality of life Questionnaire), during the active phase of their headache. Their data were compared to those of patients suffering from chronic tension type headache (CTH) and to data obtained from controls not suffering from significant forms of headache, using Kruskal-Wallis tests. Results - During the active phase of the CH, the patients’ generic QOL was significantly worse than that of normal controls in four of the 8 domains of the SF-36 instrument. Apart from a significantly worse result in the ‘Bodily pain’ SF-36 domain, there were no significant differences between the CH patients’ and the CTH patients’ results. All the dimensions and the total score of the headache-specific CHQQ instrument showed significantly worse QOL in the CH group than in the CTH group or in the control group. Conclusion - Cluster headache has a significant negative effect on the quality of life. The decrease of QOL experienced by the patients was better reflected by the headache-specific CHQQ instrument than by the generic SF-36 instrument. ]