Transcript スライド 1

MAPPING THE CLINICAL WORLD TO ICF
Disabilities in Working Life
for Persons with Various
Intractable Diseases Influenced
by Workplace Environments
- Results of mail survey based on ICF framework in Japan -
Yuichiro HARUNA, Ph.D.
National Institute of Vocational Rehabilitation
Wakaba, Mihama-ku, Chiba, 261-0014 Japan
E-mail: [email protected]
Background
• 1. ICF is for all persons with health conditions.
– A lot of patients with intractable diseases have been dealt only from
medical perspectives, thus have not been recognized as persons with
disabilities with needs for full participation in Japan.
• 2. Labor is an important health-related component.
– It becomes to be recognized in Japan that a lot of patients with
“intractable” diseases have experienced rejections of job applications, or
actually are working with difficulties.
• 3. Grounds for environmental adjustments are needed.
– Scientific evidence is needed to persuade employers and policy makers
that patients with “intractable” diseases can be qualified workers if
adequate environmental adjustments are made.
Objectives
• To evaluate effects of specific
modifications of workplace environments
on performance of work-related Activity
according to various impairments and
diseases.
Methods
• Setting
– Mail survey to randomly selected individuals participating in
self-help patient groups of intractable diseases whose age was
from 18 to 65 years old.
• Participants
– Cases of 3,691 collected out of 9,901 mail delivery.
– Participants’ diseases were Systemic Lupus Erythematosus,
Ulcerative Colitis, Crohn's Disease, Behchet's Disease,
Spontaneous Occlusion of the Circle of Willis, Multiple
Sclerosis, Systemic Sclerosis, Dermatomyositis/Primary
Multiple Myositis, Spino-cerebellar Degeneration, etc.
Questionnaire (1)
Mental functions (b1)
Seeing and related functions (b229)
Hearing and vestibular functions (b249)
– Back coded into ICD from free
Additional sensory functions (b279)
description of one’s diagnosed
Sensation of pain (b289)
Voice and speech functions (b3)
name and type of disease.
Functions of the cardiovascular system (b429)
Functions of the haematological and immunological
systems (b439)
9. Functions of the respiratory system (b449)
10.Exercise tolerance functions (b455)
– Multiple answers selected from
11.Functions related to the digestive system (b539)
the options of chapters and block 12.Functions related to metabolism and the endocrine
system (b559)
level categories of ICF.
13.Urinary functions (b639)
– [problem, no problem, don’t know] 14.Genital and reproductive functions (b679)
15.Functions of the joints and bones (b729)
16.Muscle functions (b749)
17.Movement functions (b789)
18.Functions of the skin (b849)
19.Functions of the hair and nails (b869)
20.Body structures (s)
• Health Conditions
• Body functions and
Structures
1.
2.
3.
4.
5.
6.
7.
8.
Questionnaire (2)
• Activity and Participation
– Work and employment specific
domains of ICF selected based on
previous survey
– Some sub-classifications were
added. Wordings were modified.
– [problem, previous problem, no
problem, not needed for one’s work]
1.
2.
3.
4.
5.
6.
Acquiring skills (d155)
Focusing attention (d160)
Reading (d166)
Writing (d170)
Calculating (d172)
Solving problems and/or making decisions
(d175,d177)
7. Undertaking single or multiple tasks (d210,d220)
8. Working regularly avoiding tardiness, early
leaving, or absence (d2302w10)
9. Working for eight hours (d2302w11)
10. Managing one's own activity level (d2303)
11. Handling responsibilities (d2400)
12. Handling stress (d2401)
13. Handling crisis (d2402)
14. Communicating - receiving (d329)
15. Communication - producing (d349)
16. Conversation and discussion (d35)
17. Using communication devices and techniques (d360)
18. Basic interpersonal interactions (d710)
19. Formal relationships (d740)
20. Maintaining a sitting position (d4153)
21. Maintaining a standing position (d4154)
22. Lifting and carrying objects (d430)
23. Fine hand use (d440)
24. Hand and arm use (d445)
25. Walking (d450)
26. Moving around (d455)
27. Using transportation (d470)
28. Driving (d475)
29. Toileting (d530)
30. Looking after one's health (d570)
31. Maintaining one's health (d5702)
32. Going to hospital regularly (d5702w2)
33. Living independently after working hours (Ex. dwelling
and shopping) (d6)
34. Maintaining a job (d8451)
35. Promoting in an employment (d8451w2)
36. Earning a proper income by an employment (d8509w1)
(The extensions of code with ‘w-’ indicate sub-classifications.)
Questionnaire (3)
• Environmental Factors
– Work and employment specific
domains of ICF selected based
on previous survey
– Some sub-classifications were
added. Wordings were modified.
– [exist, needed but not exist,
needless]
1.
2.
Products and technology for personal use in daily living (e115)
Assistive products and technology for personal indoor and
outdoor mobility and transportation (e1201)
3. Assistive products and technology for communication (e1251)
4. Adapted work manual and training materials (e1300w1)
5. Easy-to-use equipments and machines (Ex. universal design)
(e1350w1)
6. Air conditioner or air cleaner (e1350w3)
7. Assistive products and technology for employment (e1351)
8. Design, construction and building products and technology for
entering and exiting buildings for public use (e1500)
9. Design, construction and building products and technology for
gaining access to facilities inside buildings for public use
(e1501)
10. Adjustments of facilities for common use (Ex. rest rooms,
dining rooms) (e1501w3)
11. Colleague's assistance as needed (e325w2)
12. Colleagues or supervisors who give advice on the job (e325w3)
13. Personal care providers and personal assistants (e340)
14. In-house consultant for all aspects of life (e360w1)
15. Education of all staffs and employees to avoid prejudice and
discrimination (e425w0)
16. Promote understanding about the disease and disability in supervisors
and colleagues (e425w1)
17. Employer's attitude taking enough time for good communications
(e425w3)
18. Employer's attitude positively listening to employee's opinion (e430w11)
19. Personnel policy for career advancement regardless of disease or
disability (e430w42)
20. In-house friendship activity (e5550w2)
21. In-house health care service by industrial physicians and nurses
(e5800w1)
22. Health condition check conducted by a supervisor every day (e5800w21)
23. Designated place in office for necessary rest or self management of
disease (e5800w3)
24. Accommodation for medication or self management during working hours
(e5800w4)
25. Accommodation for going to hospital regularly (e5800w511)
26. Job assignment according to one's physical strength and concentration
(e5900w211)
27. Job carving (customized adjustment of tasks of the assigned job)
(e5900w22)
28. Checking one's job by medical professionals and employer (e5900w223)
29. Employer's support for career advancement (e5900w231)
30. Education and skill training at the beginning of work or at re-assignment
(e5900w31)
31. Man-to-man individualized guidance (Ex. on-the-job training)
(e5900w332)
32. Telecommuting (e5900w411)
33. Change of working hours (Ex. flextime and Flex work) (e5900w422)
34. Work for a short time (Ex. Work-sharing) (e5900w423)
35. Accommodation for a necessary rest during work hour (e5900w424)
(The extensions of code with ‘w-’ indicate sub-classifications.)
Analysis
•Health Conditions
•Impairments
Environmental Factors
Activity and
Participation
Environmetal Factor
Not exist (needed
Exist
or needless)
No problem
Activity (incl. resolved)
and
Problem
ParticiNot needed
pation
for one's work
a
b
c
d
(excluded from analysis)
• Chi-square tests for statistical significance
• Problem incidence WITHOUT an environmental
factor (i1) = d / (b + d)
• Problem incidence WITH an environmental
factor (i2) = c / (a + c)
• Relative risk of absence of the environmental
factor (RR) = i1 / i2
Result 1:
Participation and basic recognition
Health conditions (ICD code)
Aplastic Anemia (Refractory anemia) (D61.9)
Sarcoidosis (D86.9)
Parkinson's Disease (G20)
Spino-cerebellar Degeneration (G31.9)
Multiple Sclerosis (G35)
Myasthenia Gravis (G70.0)
Pigmentary Retinal Degeneration (H35.5)
Spontaneous Occlusion of the Circle of Willis (I67.5)
Crohn's Disease (K50.9)
Ulcerative Colitis (K51.9)
Systemic Lupus Erythematosus (M32)
Dermatomyositis/Primary Multiple Myositis (M33.9)
Systemic Sclerosis (M34.9)
Sjeogren's Syndrome (M35.0)
Mixed connective tissue disease (M35.1)
Behchet's Disease (M35.2)
Neurofibroma (Q85)
total Problems in
respon- seeking
ders (n) employment
163
50.5%
136
26.9%
207
71.6%
166
65.3%
205
58.7%
236
49.6%
161
54.7%
235
44.6%
273
49.1%
287
41.3%
349
55.7%
194
57.5%
208
36.5%
167
43.8%
127
36.1%
237
36.6%
146
36.4%
Job experience
current
55.8%
47.1%
19.8%
25.9%
37.1%
43.6%
39.8%
63.8%
68.1%
64.8%
46.4%
27.8%
26.0%
32.9%
37.8%
46.4%
54.1%
ever
90.8%
91.2%
92.8%
95.2%
86.8%
90.3%
94.4%
91.1%
96.3%
92.7%
90.8%
82.5%
85.6%
90.4%
88.2%
94.1%
94.5%
Recognition as a
'person with disability'
by others by oneself
13.3%
36.9%
21.2%
43.8%
84.7%
92.6%
88.7%
95.7%
56.3%
70.3%
26.3%
51.9%
65.7%
88.3%
29.3%
47.8%
19.7%
48.6%
12.4%
32.2%
16.3%
36.7%
35.8%
54.0%
34.4%
55.8%
21.8%
46.8%
21.2%
37.3%
31.4%
56.2%
42.0%
50.8%
Result 2:
Health Condition and Impairments
Example: Impairments related to
‘SLE(Systemic Lupus Erythematosus)’
Health Condition
Body functions/ Activities
structures
Participation
• (77.6%)'Exercise tolerance functions
Environmental
Personal
• (71.3%)'Functions of the skin'
factors
factor
• (66.9%)'Functions of the haematological
and immunological systems'
• (56.2%)'Sensation of pain'
• (54.6%)'Functions of the joints and bones'
• (52.7%)'Functions of the hair and nails'
• (44.2%)'Body structures'
• (43.2%)'Functions related to metabolism and the endocrine system'
• (42.9%)'Seeing and related functions'
• (39.1%)'Muscle functions'
• (38.5%)'Functions related to the digestive system'
• (37.9%)'Urinary functions'
Result 3:
Impairment and Activity Limitations
Health Condition
Example: Activity Limitations
related to Impairment of
'Exercise tolerance functions’
in ‘SLE’
WITHOUT proper environmental adjustments
•
•
•
•
•
Body functions/ Activities
structures
Environmental
factors
(31.9%)'Handling stress (d2401)'
(26.8%)'Promoting in an employment (d8451w2)'
(26.2%)'Maintaining a standing position (d4154)'
(25.4%)'Managing one's own activity level (d2303)'
(25.0%)'Handling responsibilities (d2400)'
Participation
Personal
factor
Result 4:
Health Condition and Activity Limitations
Health Condition
Example: Activity Limitations
related to ‘SLE’
WITHOUT proper environmental adjustments
•
•
•
•
•
•
•
•
•
•
Body functions/ Activities
structures
Environmental
factors
Participation
Personal
factor
(39.5%)'Working for eight hours'
(37.2%)'Handling stress'
(34.1%)'Promoting in an employment'
(33.6%)'Maintaining a job'
(32.0%)'Managing one's own activity level'
(31.6%)'Maintaining a standing position'
(31.2%)'Lifting and carrying objects'
(29.9%)'Working regularly avoiding tardiness, early leaving, or absence'
(26.1%)'Handling responsibilities'
(26.1%)'Earning a proper income by an employment'
Result 5: Effects of Environmental
Factors (1)
Health Condition
Example: ‘Handling stress’ problem related to
Impairment of ‘Exercise tolerance functions’
Body functions/ Activities
structures
Environmental
factors
Average incidence of the problem: 47.1% (WIHOUT Env.Adj.)
Participation
Personal
factor
WITH Env.Adj
Environmental adjustments
Promote understanding about the disease and disability in supervisors and colleagues
Designated place in office for necessary rest or self management of disease
Accommodation for a necessary rest during work hour
Employer's attitude taking enough time for good communications
Work for a short time (Ex. Work-sharing)
Employer's attitude positively listening to employee's opinion
Accommodation for medication or self management during working hours
Design, construction and building products and technology for entering and exiting
buildings for public use
26.7%
27.5%
30.4%
30.5%
31.6%
32.5%
34.0%
R.R.
1.75
1.64
1.48
1.46
1.4
1.36
1.35
32.2%
1.35
Result 5: Effects of Environmental
Factors (2)
Health Condition
Example: ‘Handling stress’ problem
related to ‘SLE’
Body functions/ Activities
structures
Environmental
factors
Average incidence of the problem: 37.2% (WIHOUT Env.Adj.)
Participation
Personal
factor
WITH Env.Adj
Environmental adjustments
Promote understanding about the disease and disability in supervisors
and colleagues
Accommodation for going to hospital regularly
Accommodation for medication or self management during working
Designated place in office for necessary rest or self management of
disease
Design, construction and building products and technology for entering
and exiting buildings for public use
Colleagues or supervisors who give advice on the job
R.R.
17.9% 2.1
22.2% 2.04
20.8% 1.87
20.0% 1.82
20.0% 1.74
22.9% 1.6
Result 5: Effects of Environmental
Factors (3)
Health Condition
Example: ‘Handling stress’ problem related to
Impairment of ‘Exercise tolerance functions’
related to ‘SLE’
Body functions/ Activities
structures
Environmental
factors
Average incidence of the problem: 31.9% (WIHOUT Env.Adj.)
Environmental adjustments
Accommodation for going to hospital regularly
Accommodation for medication or self
management during working hours
Participation
Personal
factor
WITH Env.Adj
R.R.
15.7% 3.64
17.5% 2.32
Discussion 1:
Medical and Social models
• Activity Limitations (Performance) are very changeable
by interaction of individual and environment.
– The results clearly indicated that Activity Limitations were significantly influenced by
existence or absence of environmental factors, being specific to Health Conditions and
Impairments, supporting the idea of “The political notion that disability is as much the
result of environmental barriers as it is of health conditions or impairments must be
transformed, first into a research agenda and then into valid and reliable evidence.”
proposed in the Annex 5 of ICF (ICF and people with disabilities).
• The results can be ‘evidence to bring genuine social
change for persons with disabilities’.
– The obtained results are suitable to persuade employers and policy makers, because the
results show them not only “what to do” but also “what they could get” by appropriate
environmental adjustments. This may be a relevant to the challenging idea of “ICF also
serves as a potentially powerful tool for evidence based advocacy. It provides reliable and
comparable data to make the case for change. - - - This evidence can bring genuine social
change for persons with disabilities around the world.” in the same paragraph above.
Discussion 2:
Using Environmental Factors
• Sub-classification specific to work and employment fields
is needed for the classification of Environmental Factors.
– Different services under the domain of e5900 (Labour and employment services), for
instance, can be facilitators or barriers for employment of persons with health conditions.
There isn’t much point in generally coding e5900 for employment concerns. Also the predocumented list of detailed environmental factors may be used as a checklist to identify
‘absences of facilitators’, which is usually difficult even for experienced coders.
– In this study, tentative sub-classification were coded with extension of ‘w’, such as
e5900w1, e5900w11, e5900w12, e5900w2, which can be summarized to e5900 if needed.
• Empirical approaches are important for practical
qualification of environmental factors.
– Facilitators and barriers reported by employers or employees with disabilities not
necessarily have real impacts on relevant functioning. The calculated R.R. of the present
results may be indices for empirical qualification as facilitator or barrier, although they
could only be obtained from collective comparisons.
Discussion 3:
‘Standard’ Environment
• ‘Uniform’ environment and
‘maximally facilitating’
environment could be
irreconcilable.
Needs for environmental adjustments
‘Performance’
in the current environment
‘Capacity’
in the standard environment
– The present results clearly indicated that effects of environmental factors on improvement
of Activity Limitation of various domains were dependent of Health conditions and
Impairments, thus to realize one’s ‘highest probable level of functioning that a person
may reach’ (=Capacity), the environment should be customized for each person.
– But the customized environments are obviously incompatible with the ‘uniform’
environment that is the same for all persons in all countries to allow standardization for
international comparison.
– The author propose clear distinction of the two concepts. The concept of ‘customized’
standard environment is as important as the ‘uniform’ one, since it is consistent with the
idea of ‘reasonable accommodation’ appeared in some drafts of International Convention
on Protection and Promotion of the Rights and Dignity of Persons with Disabilities.
Conclusion
• Using ICF’s framework and classifications, significant
evidence was obtained for improvement of functioning
of persons with various intractable diseases in working
life by well-targeted specific modification of workplace
environments.
The whole results other then the examples could be
browsed in hyper-text fashion at the URL:
http://plaza.umin.ac.jp/~haruna/icd_icf_english/
Acknowledgement
This study is commissioned by the Japanese Ministry of Health, Welfare
and Labor.
An application on the web
• The varied and complex
relationship between ICF
components could be more
understandable if they are
provided as an integrated
database. We are making a
comprehensive database
using ICF as its framework
and classification for coding
information.
• The demonstrative English
version of the database
application could be tried at
the URL:
http://uwdb.jeed.or.jp/uwdb2/