Prof. Jozef Opara, MD, PhD Workshop W1 Clinimetrics – what should we measure for what purpose? „ Repty” Rehab Centre, Tarnowskie Gory Jerzy Kukuczka Academy of Physical Education, Katowice, Poland
Prof. Jozef Opara, MD, PhD Workshop W1 Clinimetrics in Post-Polio Syndrome – participation „ Repty” Rehab Centre, Tarnowskie Gory Academy of Physical Education, Katowice, Poland
Clinimetrics in Post-Polio I C I D H 1 International Classification of Impairments, Disabilities and Handicaps. A manual of classification relating to the consequences of disease. Geneva, WHO 1980 Impairment → Disability → Handicap
Clinimetrics in Post-Polio Impact of Post-Polio: impairment in NS loss of function (ADL) decreasing of QoL
Clinimetrics Clinimetrics : Clinimetrics, a term introduced in 1983 by Feinstein and developed in the next years should be regarded as the measurement of clinical and patient relevant phenomena.
Clinimetrics Clinimetrics : is a specific domain of knowledge that focuses on the construction and evaluation of clinical indexes .
Clinimetrics Clinimetrics: Feinstein A.R.: An additional basic science for clinical medicine: IV. The development of clinimetrics. Ann. Int. Med. 1983, 99, 843 Asplund K.: Clinimetrics in stroke research. Stroke 1987, 18, 528-530
Clinimetrics in Post-Polio Clinimetrics in Post-Polio: Impairment scales Functional (ADL) QoL questionnaires
Clinimetrics in Post-Polio Workshop 1: Clinimetrics – what should we measure for what purpose?
Clinimetrics in Post-Polio Clinimetrics – what should we measure for what purpose? Common impairments in persons with post-polio syndrome, such as muscle weakness, muscle fatigue, and pain often lead to activity limitations and participation restrictions which can impact on quality of life.
Clinimetrics in Post-Polio Clinimetrics – what should we measure for what purpose? Key points: 1. A comprehensive assessment of functioning, disability and quality of life should form the basis for the individually tailored rehabilitation program in polio survivors.
Clinimetrics in Post-Polio Clinimetrics – what should we measure for what purpose? Key points: 2. The choice of measurement instruments for functional assessment should be based on evidence of clinimetric properties for the population of polio survivors.
Clinimetrics in Post-Polio Clinimetrics – what should we measure for what purpose? Key points: 3. A standard set of outcome measures should be internationally agreed upon and used in studies in polio survivors.
Clinimetrics in Post-Polio ICF The International Classification of Functioning, Disability and Health (ICF) 2001 developed by the World Health Organization’s (WHO), provides a unified language and framework for the description of functioning and disability in polio survivors. Assessment of functioning and disability is important for diagnostic purposes and with repeated assessments, can assist in monitoring disease progression and provide prognostic information.
Clinimetrics in Post-Polio ICF International Classification of Functioning, Disability and Health Assessments can also be used for evaluating the efficacy of interventions both for each individual polio survivor but also in the context of clinical trials. According to ICF participation is defined by involvement in a life situation. Environmental factors have an impact on all components of functioning/disability and vice versa.
Conceptual schema of the ICF (2001) Health Condition (disorder or disease) Body Activity Participation Functions & Structure Personal Environmental factors factors
ICF Model of ICF - levels Organ level Person level Social level
ICF Model of ICF - levels Organ level Person level Social level Body functions Activity Participation & struction
ICF Model of ICF - levels Organ level Person level Social level Body functions Activity Participation & struction Somatic Perceived Life sensations health satisfaction
ICF and QoL Model of ICF and QoL – levels Organ level Person level Social level Body functions Activity Participation & struction Somatic Perceived Life sensations health satisfaction pain feelings of health satisfaction fatigue satisfaction with with role dizziness health performance
ICF and QoL Model of ICF and QoL – levels Organ level Person level Social level Body functions Activity Participation & struction Overall well-being Somatic Perceived Life sensations health satisfaction pain feelings of health satisfaction fatigue satisfaction with with role dizziness health performance
clinimetric scales „ Ideal ” scale should be: simple, reliable, reproducible, sensitive, valid, uniform, reasonable, communicative, consistent, practical, useful in the clinic, show changes in clinical status, to distinguish between groups of patients Rob de Haan: Clinimetrics in stroke. Universiteit Amsterdamm, 2005.
Clinimetrics in Post-Polio ICF International Classification of Functioning, Disability and Health 2001 Body structure in PPS: muscle weakness fatigue muscle- and joint pain
Clinimetrics in Post-Polio ICF Body structure in PPS: pain A study by Willen and Grimby [1998] found that more than half of patients with prior polio and PPS experienced pain daily with a mean Visual Analogue Scale (VAS) score of 55/100. Willen C. and Grimby G. Pain, physical activity, and disability in individuals with late effects of polio. Arch Phys Med Rehabil, 1998. 79(8): 915-919.
Clinimetrics in Post-Polio ICF Body structure in PPS: pain In Werhagen and Borg study (2010), pain was present in two thirds of PPS patients. Almost all pain was of nociceptive character and of relatively high intensity. Pain was more frequently reported by women than by men, and more often in younger patients. Werhagen L. and Borg K. Analysis of long-standing nociceptive and neuropathic pain in patients with post-polio syndrome. J Neurol, 2010. 257(6): 1027-1031.
Clinimetrics in Post-Polio ICF Body structure in PPS: pain In another study by Werhagen and Borg (2013), pain was present in 68% of PPS patients. Pain had significant impact on Quality of Life, as measured by SF-36. Although patients have a high mean VAS score the pain only affects quality of life for Vitality and General Health, but not for other physical and mental domains. Werhagen L. and Borg K. IMPACT OF PAIN ON QUALITY OF LIFE IN PATIENTS WITH POST-POLIO SYNDROME. J Rehabil Med 2013; 45: 161 – 163
Clinimetrics in Post-Polio ICF Body function in PPS: walking Skough in her dissertation stated that gait disturbances are commonly present in PP patients. For evaluation of performance of gait as well 3D analysis and/or the six-minute-walk test (6MWT) is useful. Skough K, Broman L, Borg K. Test-retest reliability of the 6- min walk test in patients with postpolio syndrome. Int J Rehabil Res. 2013; 36(2): 140-145.
WHO`s Definition of Health (1958) Health is: “a state of complete physical, mental and social well-being and not merely the absence of diseases and infirmity”
QoL in PPS Quality of life - WHO definition „an individual's perception of their position in life, in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns" WHOQOL Group 1993
QoL in PPS Health-Related Quality of Life (HRQoL) „how a person’s health affects their ability to carry out normal social and physical activities”
QoL in Post-Polio Quality of Life in Polio Frans Nolet et al. (2002) evaluated HRQoL in 151 victims of the 1956 polio epidemic. F Nollet, B Ivanyi, A Beelen, R J de Haan, G J Lankhorst, M de Visser. Perceived health in a population based sample of victims of the 1956 polio epidemic in the Netherlands. J Neurol Neurosurg Psychiatry 2002; 73: 695 – 700.
QoL in Polio Quality of Life in Polio Frans Nolet et al. (2002) cont. … health problems were frequently reported. They were mainly related to late onset neuromuscular symptoms following poliomyelitis, which were perceived by a substantial proportion of all polio survivors — not only subjects with polio residuals but also individuals who (subjectively) had recovered from polio. F Nollet, B Ivanyi, A Beelen, R J de Haan, G J Lankhorst, M de Visser. J Neurol Neurosurg Psychiatry 2002; 73: 695 – 700.
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