Обмеження активності у пацієнтів із синдромом хронічної втоми – складання специфічних анкет хвороби

 

 

Jo Nijs, Peter Vaes, Elke Van Hoof, McGregor, Kenny De Meirleir

 

Department of Human Physiology, Faculty of Physical Education and Physical Therapy, Vrije Universiteit Brüssel, Belgium.

Department of Physical Therapy, Faculty of Physical Education and Physical Therapy, Vrije Universiteit Brüssel, Belgium.

Department of Biological Sciences, Faculty of Science, University of Newcastle, Callaghan, New South Wales, Australia.

Fatigue Clinic, Vrije Universiteit Brüssel, Belgium, and the Department of Human Physiology, Faculty of Physical Education and Physical Therapy, Vrije Universiteit Brüssel, Belgium.

Анотація. Джо Нійс, Петер Ваес і ін. Обмеження активності у пацієнтів із синдромом хронічної втоми – складання специфічних анкет хвороби. В статті досліджено особливості обмеження рухової активності пацієнтів із синдромом хронічної втоми на основі спеціально розробленого опитувальника із врахуванням різних видів рухової активності.

Ключові слова: синдром хронічної втоми, обмеження рухової активності, анкетування.

Аннотация. Джо Нийс, Петер Ваес и др. Ограничение активности у пациентов с синдромом хронической усталости – составление специфических анкет болезни. В статье описаны исследования особенностей ограничения двигательной активности пациентов с синдромом хронической усталости на основе специально разработанного вопросника с учётом различных видов двигательной активности/

Ключевые слова: синдром хронической усталости, ограничение двигательной активности, анкетирование.

Abstract. Jo Nijs, Peter Vaes ets. Review of the literature indicated the lack of disease specific measures for assessing activity limitations and participation restriction in patients with Chronic Fatigue Syndrome. Retrospective analysis of Karnofsky Performance Status questionnaires and Activities of Daily Living questionnaires (a Dutch version of the Barthel index, modified for CFS) of 141 subjects was performed to create a new questionnaire. Data analysis resulted in the following item selection, based on most frequently reported activity limitations and participation restriction; cleaning, washing dishes and returning them to cupboard, iron, do the wash, gardening, replace light bulb, walking, climb one flight of stairs, stand one hour, sit two hours, doing groceries, thirty minutes of computer work, carrying heavy objects, write a full page letter, use a screwdriver, hammer a nail, make one bed, reading, social activities, doing sports, studying, driving a car, going to school/working, preparing meals and caring for a child. These data were used to create the CFS-Activities and Participation Questionnaire (CFS-APQ). The reliability and different aspects of validity of this new measure still need to be established.

Key words. Chronic Fatigue Syndrome, activity limitations, participation restriction, CFS-APQ, questionnaire, ICIDH2-B2

 

 

Chronic Fatigue Syndrome is characterized by «a new onset of persistent or relapsing, debilitating fatigue in a person without a previous history of such symptoms that does not resolve with bed rest and that is severe enough to reduce or impair average daily activity to less than 50% of the patients premorbid activity level for at least 6 months». The 1994 Center for Disease Control case definition for Chronic Fatigue Syndrome (1) dropped the requirement of an average daily activity below 50%, because it was too difficult to verify. Indeed, exercise capacity testing appears to be a valid albeit an expensive and time consuming option. Nevertheless, maximal workload at exhaustion averaged 53% of normal in a large sample of patients, suggesting severe disability in Chronic Fatigue Syndrome. Therefore, a cheap, quick and valid measure for assessing daily activity level might be of great value. Klimas (1997) suggested more work should be done to develop objective measures that would actually reflect the patient's degree of disability. Disease specific questionnaires are designed for clear-cut populations (for instance the Fibromyalgia Impact Questionnaire), while general measures permit comparisons among populations. Although general measures for assessing health status are widely used in CFS-research, there seems to be a lack of a disease-specific measures for assessing functionality in Chronic Fatigue Syndrome.

In 1980, the World Health Organisation presented taxonomy of disability, the international classification of impairments, disabilities and handicaps (ICIDH). Recently, this classification was revised into the international classification of functioning, disability and health (ICIDH2-B1, see http: // www. who. ch/icidh), and it represents an underlying biopsychosocial model. Two dimensions of this health classification were used to define a clear-cut area of quality of life: activity limitations and participation restriction. According to the ICIDH2-B1, activity is the execution of a task or action by an individual, while participation is defined as involvement in a life situation. Activity limitations are defined as difficulties an individual may have in executing activities. Participation restrictions are defined as problems an individual may experience in involvement in life situations, and it broadens the range from the mundane (taking care of one's physical appearance) to the highest planes of human existence (employment, education, spirituality and cultural, social and political involvement).