SLIDE 1 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
SLIDE 2 Workshop W1 Clinimetrics in Post-Polio Syndrome – participation
„Repty” Rehab Centre, Tarnowskie Gory Academy of Physical Education, Katowice, Poland
- Prof. Jozef Opara, MD, PhD
SLIDE 3
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
SLIDE 4
Clinimetrics in Post-Polio
Impact of Post-Polio:
impairment in NS loss of function (ADL) decreasing of QoL
SLIDE 5
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.
SLIDE 6
Clinimetrics
Clinimetrics:
is a specific domain of knowledge that focuses on the construction and evaluation of clinical indexes.
SLIDE 7 Clinimetrics
Clinimetrics:
Feinstein A.R.: An additional basic science
for clinical medicine: IV. The development
- f clinimetrics. Ann. Int. Med. 1983, 99, 843
Asplund K.: Clinimetrics in stroke
- research. Stroke 1987, 18, 528-530
SLIDE 8
Clinimetrics in Post-Polio
Clinimetrics in Post-Polio: Impairment scales Functional (ADL) QoL questionnaires
SLIDE 9
Clinimetrics in Post-Polio
Workshop 1: Clinimetrics – what should we
measure for what purpose?
SLIDE 10 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
SLIDE 11
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.
SLIDE 12
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.
SLIDE 13
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.
SLIDE 14 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.
SLIDE 15 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.
SLIDE 16
Health Condition (disorder or disease) Body Functions & Structure Activity Participation
Environmental factors
Conceptual schema of the ICF (2001)
Personal
factors
SLIDE 17
ICF
Model of ICF - levels
Organ level Person level Social level
SLIDE 18
ICF
Model of ICF - levels
Organ level Person level Social level Body functions Activity Participation
& struction
SLIDE 19
ICF
Model of ICF - levels
Organ level Person level Social level Body functions Activity Participation & struction Somatic Perceived Life sensations health satisfaction
SLIDE 20
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
SLIDE 21 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
SLIDE 22
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.
SLIDE 23
Clinimetrics in Post-Polio
ICF International Classification of Functioning,
Disability and Health 2001
Body structure in PPS:
muscle weakness fatigue muscle- and joint pain
SLIDE 24
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.
SLIDE 25 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.
SLIDE 26
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
SLIDE 27
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.
SLIDE 28
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”
SLIDE 29
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
SLIDE 30
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”
SLIDE 31 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
- f victims of the 1956 polio epidemic in the Netherlands.
J Neurol Neurosurg Psychiatry 2002; 73: 695–700.
SLIDE 32 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.
SLIDE 33 Clinimetrics in Post-Polio
Quality of Life in PPS
Jacob and Shapira evaluated 101 polio survivors who sought treatment at 2 post-polio clinics in
- Israel. The majority of participants were between
the ages of 45 and 65 years, and approximately 25% were wheelchair-bound.
Tamar Jacob, and Alex Shapira. QUALITY OF LIFE AND HEALTH CONDITIONS REPORTED FROM TWO POSTPOLIO CLINICS IN ISRAEL. J Rehabil Med 2010; 42: 377–379
SLIDE 34 QoL in Post-Polio
Quality of Life in PPS cont.
Participants had low physical scores and normative mental
- scores. Mean scores on the Short-Form-12 questionnaire
for physical and mental components were 32.9 and 50.3,
- respectively. Approximately 70% expressed the belief that
exposure to up-to-date information about post-polio, as well as participation in social activities, might improve their quality of life.
Tamar Jacob, and Alex Shapira. QUALITY OF LIFE AND HEALTH CONDITIONS REPORTED FROM TWO POSTPOLIO CLINICS IN ISRAEL. J Rehabil Med 2010; 42: 377–379
SLIDE 35 QoL in Post-Polio
Quality of Life in PPS
Lexell and Brogardh (2012) evaluated 169
persons decades after polio infection. They responded to the Life Satisfaction Questionnaire (LiSat-11) assessing satisfaction with life as a whole and 10 domains of life satisfaction and to a 13-item questionnaire assessing self-reported impairments related to late effects of polio.
- J. Lexell, C. Brogardh. Life satisfaction and self-reported impairments in
persons with late effects of polio. Ann Physical Rehab Med 2012; 55: 577–589
SLIDE 36 QoL in Post-Polio
Lexell and Brogardh (2012) cont.
Satisfaction with life as a whole, and different
domains of life satisfaction were low to moderately associated with self-reported impairments.
- J. Lexell, C. Brogardh. Life satisfaction and self-reported impairments in
persons with late effects of polio. Ann Physical Rehab Med 2012; 55: 577–589
SLIDE 37
Participation in Post-Polio
DEFINITIONS of ICF COMPONENTS Participation is involvement in a life situation. Activity limitations are difficulties an individual
may have in executing activities.
Participation restrictions are problems an
individual may experience in involvement in life situations.
Environmental factors make up the physical,
social and attitudinal environment in which people live and conduct their lives.
SLIDE 38 Disability and participation
Disability and participation The social model of disability sees the issue of
"disability" as a socially created problem and a matter of the full integration of individuals into
- society. In this model, disability is not an
attribute of an individual, but rather a complex collection of conditions, many of which are created by the social environment.
SLIDE 39
Participation in Post-Polio
ICF COMPONENT: Participation
It is difficult to distinguish between "Activities"
and "Participation" on the basis of the domains in the Activities and Participation component.
Similarly, differentiating between “individual”
and “societal” perspectives on the basis of domains has not been possible given international variation and differences in the approaches of professionals and theoretical frameworks.
SLIDE 40 Participation in Post-Polio
ICF COMPONENT: Participation
How to distinguish between "Activities" and
"Participation”?
There are four possible ways of doing so: (a) to designate some domains as activities and others as
participation, not allowing any overlap;
(b) same as (a) above, but allowing partial overlap; (c) to designate all detailed domains as activities and the
broad category headings as participation;
(d) to use all domains as both activities and participation.
SLIDE 41 Participation in Post-Polio
ICF COMPONENT: Contextual Factors
Contextual Factors represent the complete
background of an individual’s life and living. They include two components: Environmental Factors and Personal Factors – which may have an impact on the individual with a health condition and that individual’s health and health-related states.
SLIDE 42 Participation in Post-Polio
ICF COMPONENT: Contextual Factors
Environmental factors make up the physical,
social and attitudinal environment in which people live and conduct their lives. These factors are external to individuals and can have a positive or negative influence on the individual’s
performance as a member of society, on the
individual’s capacity to execute actions or tasks,
- r on the individual’s body function or structure.
SLIDE 43 Participation in Post-Polio
ICF COMPONENT: Environmental factors
Environmental factors are organized in the
classification to focus on two different levels:
(a) Individual – in the immediate environment of
the individual, including settings such as home, workplace and school. Included at this level are the physical and material features of the environment that an individual comes face to face with, as well as direct contact with others such as family, acquaintances, peers and strangers.
SLIDE 44 Participation in Post-Polio
ICF COMPONENT: Environmental factors
Environmental factors are organized in the
classification to focus on two different levels:
(b) Societal – formal and informal social structures,
services and overarching approaches or systems in the community or society that have an impact on individuals. This level includes organizations and services related to the work environment, community activities, government agencies, communication and transportation services, and informal social networks as well as laws, regulations, formal and informal rules, attitudes and ideologies.
SLIDE 45 Participation in Post-Polio
ICF COMPONENT: Environmental factors Environmental factors interact with the components of
Body Functions and Structures and Activities and
- Participation. Disability is characterized as the outcome
- r result of a complex relationship between an
individual’s health condition and personal factors, and of the external factors that represent the circumstances in which the individual lives. Because of this relationship, different environments may have a very different impact
- n the same individual with a given health condition. An
environment with barriers, or without facilitators, will restrict the individual’s performance; other environments that are more facilitating may increase that performance.
SLIDE 46 Participation in Post-Polio
ICF COMPONENT: Activities and participation
Chapter 1 Learning and applying knowledge Chapter 2 General tasks and demands Chapter 3 Communication Chapter 4 Mobility Chapter 5 Self-care Chapter 6 Domestic life Chapter 7 Interpersonal interactions and relationships Chapter 8 Major life areas Chapter 9 Community, social and civic life
SLIDE 47 Participation in Post-Polio
ICF COMPONENT: Activities and participation
Chapter 4 Mobility
- 1. Changing and maintaining body position
(d410-d429)
- 2. Carrying, moving and handling objects
(d430-d449)
- 3. Walking and moving (d450-d469)
- 4. Moving around using transportation (d470-d499)
SLIDE 48 Participation in Post-Polio
ICF COMPONENT: Activities and participation
Chapter 7 Interpersonal interactions and relationships
- 1. General interpersonal interactions (d710-d729)
- 2. Particular interpersonal relationships
(d730-d799)
SLIDE 49 Participation in Post-Polio
ICF COMPONENT: Activities and participation
Chapter 8 Major life areas
- 1. Education (d810-d839)
- 2. Work and employment (d840-d859)
- 3. Economic life (d860-d899)
SLIDE 50 Participation in Post-Polio
ICF COMPONENT: Activities and participation
Chapter 9 Community, social and civic life
d910 Community life d920 Recreation and leisure d930 Religion and spirituality d940 Human rights d950 Political life and citizenship d998 Community, social and civic life, other specified d999 Community, social and civic life, unspecified
SLIDE 51 PATICIPATIONS
ICF COMPONENT: ENVIRONMENTAL FACTORS
Chapter 1 Products and technology Chapter 2 Natural environment and human- made changes to environment Chapter 3 Support and relationships Chapter 4 Attitudes Chapter 5 Services, systems and policies
SLIDE 52 PARTICIPATION
How to assess the participation?
Impact on Participation and Autonomy Questionnaire.
Cardol M, de Haan RJ, van den Bos GA, de Jong BA, de Groot IJ. The development of a handicap assessment questionnaire: the Impact on Participation and Autonomy (IPA). Clinical Rehabilitation. 1999; 13: 411. Cardol M, de Haan RJ, de Jong BA, van den Bos GA, de Groot IJ. Psychometric properties of the Impact on Participation and Autonomy
- Questionnaire. Arch Phys Med Rehabil 2001; 82: 210-216.
SLIDE 53 PARTICIPATION
How to assess the participation?
Impact on Participation and Autonomy
In 1999, Mieke Cardol from Research Institute of Public Health NIVEL in Utrecht (Netherlands Institute for Health Services Research) and colleagues published a questionnaire Impact on Participation and Autonomy, shortly named as IPA. This questionnaire passed then the cultural adaptation and validation for English (Paul Kersten from Southhampton), Swedish (Maria Larsen-Lund from Umea), German (Daniel Senn from Wettingen, Switzerland) and Italian (Franco Franchignoni from Verona). The questionnaire is constantly updated and available on the Internet (http://www.nivel.eu). The authors call for sending them any articles written on this topic.
SLIDE 54
PARTICIPATION
Impact on Participation and Autonomy
The questionnaire consists of 32 questions included in the five sub- scales: Autonomy indoors (independence in the apartment - 7 questions), Family roles (the role of the family -7), Autonomy outdoors (independence outside the home - 5), Social life and relationships (social life and interpersonal relationships -7) and work and education (work and study - 6). The last question is general and applies to the question of how a respondent evaluates their chances of living a life in accordance with their expectations (My chances of living life the way I want to are: very good, good, fair, poor, very poor). In response to most of the questions respondents have 5 opportunities, in some cases these are 3 possibilities. The questionnaire takes about 20 minutes to fill in.
SLIDE 55
PARTICIPATION
Impact on Participation and Autonomy
Autonomy indoors
Getting around indoors where one wants Getting around indoors when one wants Washing, dressing, grooming the way one wants Washing, dressing, grooming when one wants Going to bed when one wants Going to the toilet when one needs Eating and drinking when one wantsminutes to fill in.
SLIDE 56
PARTICIPATION
Impact on Participation and Autonomy
Family role
Contributing to looking after the home Minor housework jobs the way one wants Heavy housework jobs the way one wants Getting housework done when one wants Repairs and upkeep the home Fulfilling one’s role at home Spending income as wished
SLIDE 57
PARTICIPATION
Impact on Participation and Autonomy
Autonomy outdoors
Visiting friends when one wants Going on trips and holiday one wants Spending leisure time the way one wants Frequency of social contacts Living life the way one wantsto looking after the home
SLIDE 58
PARTICIPATION
Impact on Participation and Autonomy
Social relations
Communication on equal terms with close people Relationship with close people Respect from close people Relationship with acquaintances Respect from acquaintances Intimate relationship Helping and supporting people
SLIDE 59
PARTICIPATION
Impact on Participation and Autonomy
Work and education
Getting or keeping work one wants D oing work the way one wants Contacts with colleagues Achieving or maintaining a position one wants Getting a different job Getting training or education one wants
SLIDE 60 PARTICIPATION
Impact on Participation and Autonomy
References:
Kersten P, Cardol M, George S, Ward C, Sibley A, White B (in press).
Validity of the Impact on Participation and Autonomy questionnaire – a comparison between two countries. Disability and Rehabilitation.
Sibley A, Kersten P, Ward CD, George S, White B, Mehta RL (2006).
Measuring autonomy in disabled people: validation of a new scale in a UK population. Clinical Rehabilitation 20(9):793-803.
Kersten P. Autonomy: the be all and end all in rehabilitation?
Disability and Rehabilitation. 2002; 24 (18): 993-995.
Cardol M. De Jong BA. Ward CD. On autonomy and participation in
- rehabilitation. Disability and Rehabilitation. 2002; 24 (18): 970-974.
Cardol M, de Jong BA, van den Bos GA, Beelem A, de Groot IJ, de
Haan RJ. Beyond disability: perceived participation in people with a chronic disabling condition. Clinical Rehabilitation. 2002; 16: 27-35.
SLIDE 61 PARTICIPATION in late Polio
Lund and Lexel investigated how 160 persons with late effects of
polio perceive their participation. All subjects answered the Swedish version of the Impact on Participation and Autonomy Questionnaire. In results: A majority of the respondents perceived their participation as sufficient in most activities and 65% of the respondents perceived no severe problems with participation. The remaining 35% perceived 1-6 severe problems with participation. All 5 domains of participation were positively correlated with the 9 items for problem experience. Most restrictions in participation were reported in the domains of Family role, Autonomy outdoors, and Work and education. Insufficient instrumental support was most strongly associated with the perception of severe problems with participation. Lund ML, Lexell J. Perceived participation in life situations in persons with late effects of polio. J Rehabil Med. 2008; 40(8): 659-564.
SLIDE 62 PARTICIPATION in PPS
ICF COMPONENT: PARTICIPATION
In a cross-sectional survey of 336 persons with polio and PPS in UK, in average age of 54 years Atwal et al. found that polio survivors valued social occupations and participation in family life. This research has also shown that healthcare professionals still do not understand polio and PPS and this lack of understanding influences their clients' quality
- f life. Finances and accessibility of environments also influence
participation in chosen occupations. Rehabilitation programmes for people with polio and PPS need to be targeted towards maintaining and improving accessible environments and participation in chosen
Atwal A, Giles A, Spiliotopoulou G, Plastow N, Wilson L. Living with polio and postpolio syndrome in the United Kingdom. Scand J Caring
- Sci. 2013; 27(2): 238-245.
SLIDE 63 PARTICIPATION in PPS
Jung et al. investigated HRQOL in 364 Swedish patients
with PPS. QOL was significantly lower in PPS patients for all eight subdomains and the two main scores (physical and mental) when compared with the controls. Male patients had a significantly higher QOL than female patients for all subdomains and also for mental compound score and physical compound score. There was a decrease in QOL in the physical domains and an increase in vitality with age. PPS decreases HRQOL in both sexes, more in female patients. QOL for physical domains decreases whereas vitality increases with age.
Jung TD, Broman L, Stibrant-Sunnerhagen K, Gonzalez H, Borg K. Quality of life in Swedish patients with post-polio syndrome with a focus
- n age and sex. Int J Rehabil Res. 2014 Jun;37(2):173-179.
SLIDE 64 PARTICIPATION in PPS
Atwal et al. investigated 51 PPS persons from two
regions in England. Their research found that polio survivors used terms used to describe quality of life which could be associated with that of happiness. This research has identified resolvable factors that influence quality of life namely inaccessible environments, attitudes of health-care professionals and societal
- attitudes. Polio survivors have tried alternative therapies,
chiefly acupuncture and massage, and found them to be effective in enhancing their quality of life.
Atwal A, Spiliotopoulou G, Coleman C, et al. Polio survivors' perceptions of the meaning of quality of life and strategies used to promote participation in everyday activities. Health Expect. 2014 Jan 20.
SLIDE 65 PARTICIPATION in PPS
Ten Katen et al. made a qualitative cross-sectional interview study
with 17 subjects with PPS, 12 women and 5 men, mean age 49 years. Thirteen out of 17 subjects rated their work ability six or higher on a scale from 0 to 10. Most subjects worked in an administrative, educational or managerial function. Five subjects stopped working, four worked between 0 and 20 h/week and eight worked between 20 and 40 h/week. Factors conducive to working were physical adaptations in the workplace, accessibility of the workplace and high decision latitude. Barriers to full work ability in PPS patients were high physical job demands, low social support and the symptoms of PPS, especially fatigue and pain. Ten Katen K, Beelen A, Nollet F, Frings-Dresen MH, Sluiter JK. Overcoming barriers to work participation for patients with postpoliomyelitis syndrome. Disabil Rehabil. 2011; 33(6): 522-529.
