Participation Survey/Mobility: Psychometric Properties of a Measure of Participation for People With Mobility Impairments and Limitations

Article Outline

• Abstract
• Methods
  • Development of Survey Instrument
  • Procedures
    • Participants
  • Data Entry and Analysis
  • PARTS/M Scoring
• Results
  • Reliability
  • Validity
• Discussion
• Conclusions
• References
• Copyright

Abstract 

Gray DB, Hollingsworth HH, Stark SL, Morgan KA. Participation Survey/Mobility: psychometric properties of a measure of participation for people with mobility impairments and limitations.

Objective

To describe the development and psychometric properties of a self-report survey of participation by people with mobility limitations, the Participation Survey/Mobility (PARTS/M).

Design

The information obtained during interviews and focus groups was used to develop items for the PARTS/M. Demographics and measures of disability, health, and functioning were collected. The PARTS/M was administered twice.

Setting

Primarily in the midwestern United States.

Participants

Purposeful sample of 604 people with mobility limitations having a diagnosis of spinal cord injury, multiple sclerosis, cerebral palsy, stroke, or postpoliomyelitis.

Interventions

Not applicable.

Main Outcome Measure

PARTS/M is composed of 20 major life activities that are placed in 6 domains used in the activity/participation component of the International Classification of Functioning, Disability and Health: self-care; mobility; domestic life; interpersonal interactions and relationships; major life areas; and community, social, and civic life. For each activity, questions were asked about components of participation including frequency, health-related limitations, importance, choice, satisfaction, use of assistive technology, and use of personal assistance.

Results

PARTS/M domains and components of participation had good internal consistency and stability. Composite participation scores were developed for participation components and domains.

Conclusions

PARTS/M is a reliable measure of some aspects of participation in major life activities for people with mobility impairments and limitations living in community settings.

Key Words:  Consumer participation , Disability evaluation , Psychometrics , Rehabilitation

SOCIAL POLICIES, CONCEPTUAL models, and classification systems have embraced the idea that disability is manifested when person-environment interactions result in low or no participation in major life activities. One goal of the Americans with Disabilities Act (ADA)¹ is full participation in major life activities by people with disabilities. In large part, the ADA was the result of the independent living movement that advocates the inclusion of people with disabilities in activities important to the individual, choice and satisfaction in activities, reasonable accommodations for participating in activities, and equal access to programs and built environments.², ³, ⁴ Conceptual models and scientific paradigms have evolved to accommodate the expansion of factors influencing the expression of disability from biologic capacities to social contexts that have been described in a number of publications including the Institute of Medicine,⁵, ⁶ the National Center for Medical Rehabilitation Research,⁷ and the National Institute on Disability and Rehabilitation Research.⁸ A new classification system, the International Classification of Functioning, Disability and Health (ICF),⁹ includes a component for classifying and qualifying participation of people in the context of their environments. Although legislation, reports, and classification schemes promote the concept of participation in context as an important component of disability, the development of measures for capturing the essence of participation has just begun. This article describes the development and psychometric properties of a new participation measure for use in assessing what people with mobility impairments and limitations do in their lived environments.

An important goal of rehabilitation is to return persons with chronic conditions to their communities to participate. However, many rehabilitation outcome measures are focused on reducing difficulty in performing activities that are amenable to objective measurement while the patient is at the rehabilitation facility. These measures of function are based on a disease-based, clinically oriented framework and are used as benchmarks for health care reimbursements.¹⁰ A number of social outcome measures have been developed for the purpose of comparing people with impairments and or functional limitations that use role fulfillment, divergence from normative standards, degree of social integration, level of control over supports needed to participate, and relative disadvantage in social and economic life.¹¹ The influence of rehabilitation and medical interventions on the participation of people with disabilities in home and community activities has not been incorporated into health care payment plans, which reimburse only those interventions that qualify as medically necessary. Functional and social outcome measures have not been developed that address specific person-environment interactions that enhance participation in community settings.¹²

In the ICF, participation is viewed as a limitation or restriction in kind or degree of the overall outcome of that person’s involvement in some area of human life.⁹ Activities are described as the execution of a task or action by a person. Participation and activity share 9 domains: learning and applying knowledge; general tasks and demands; communication; mobility; self-care; domestic life; interpersonal interactions and relationships; major life areas; and community, social, and civil life. Participation is distinguished from activity primarily on the basis of the type of environment in which the activity or participation occurs. If the activity takes place in a standard (clinical) environment without assistive technology or personal assistance services, then the capacity to perform activities is scaled from no difficulty to totally unable to perform the activity. This measure of performance has been referred to as the “naked” person’s capacity¹³ and “within the skin” functional capacity.¹⁴ The use of personal assistance or assistive devices in the standard environment allows for a second classification of activity, a classification of the person’s maximum capacity to perform an activity when using assistive technology and/or personal assistance services. However, the number of hours of personal assistance used and the frequency of assistive technologies used are not quantified. In the ICF conceptualization, participation is the extent of a person’s involvement in some area of human life using a normative approach that compares the person with impairment to those people without impairments. The standard for full participation is based on a general, international norm within a setting of equalization of opportunities.⁹

In a recent review by Perenboom and Chorus,¹⁵ 11 surveys were analyzed for use as measures of participation as conceptualized in the ICF. Not surprisingly, they found existing measures are based on the concept of handicap as described in the 1980 version of the International Classification of Impairment, Disability and Handicap (ICIDH)¹⁶ and are inadequate to measure the person-environment or interactive concept inherent in the ICF definition of participation.¹¹, ¹⁷ However, each of the surveys addresses aspects of participation described in the ICF. For example, the Craig Handicap Scale and Reporting Technique (CHART)¹⁸ includes questions on the amount of time spent in various activities. The Nottingham Health Profile¹⁹ and World Health Organization Disability Assessment Schedule II²⁰ focus on the level of difficulty in performing activities. The London Handicap Scale²¹ queries the influence of health on limiting participation in a variety of life activities. Fulfillment of social roles and economic self-sufficiency are covered by the CHART and the Perceived Handicap Questionnaire (PHQ).²² The Reintegration to Normal Living (RNL)²³ has people compare themselves with their own standards of life satisfaction. Other surveys (PHQ, CHART) compare the responses of people with disabilities to the responses of people without disabilities for satisfaction with various aspects of life. Items on these surveys are often cognitively complex and ambiguous. The surveys were validated on different diagnostic categories, which limits generalization from 1 diagnostic group (spinal cord injury [SCI]) to other disabling conditions (arthritis). None of the 11 measures addressed evaluative aspects of participation.

During the revision of the ICIDH, Fougeyrollas et al²⁴, ²⁵ developed a conceptual approach and measure of handicap or social participation. The measure, Assessment of Life Habits (LIFE-H), is based on the disability creation process and has some similarities to the ICF conceptualization of participation. This self-report survey was designed to evaluate factors that disrupt social participation (life habits) of people with any impairment condition. The life habits cover 12 categories that are similar to the ICF 9 participation domains.¹¹ When social participation is disrupted (handicapped situation), the level of difficulty and resources required to participate are recorded. The LIFE-H instrument has been tested for internal consistency and test-retest reliability for people with SCI, traumatic brain injury, and older adults with a variety of functional limitations.²⁶

Another approach to classifying participation that was developed during the ICIDH revision was made by the Australian Institute of Health and Welfare’s (AIHW) Australian Collaborating Centre for the Revision of the ICIDH. The ICF Australian User Guide, Version 1.0,²⁷ includes 2 qualifiers for assessing participation, extent, and satisfaction. The extent of participation is assessed by service providers and has a 5-point scale ranging from full participation to complete restriction. Satisfaction in participation is reported by the consumer or advocate and has a 6-point scale. The AIHW’s approach to assessing participation provides methods for measuring and classifying participation, which are characteristics of dimensional classification schemes.²⁸ Although the LIFE-H, CHART, and ICF Australian User Guide provide evidence of progress, the conceptual complexity of the ICF in terms of different definitions of participation and capacity, unrealistic performance qualifiers, and vague criteria for environmental settings make the construction of measures for participation dimensions difficult.¹¹, ²⁹, ³⁰, ³¹, ³², ³³

This article describes the development and psychometric properties of a self-report survey that addresses participation in major life activities by people with mobility impairments and limitations, the Participation Survey/Mobility (PARTS/M). The PARTS/M meets the definition used in the ICF of a measure of performance in the current environment. Figure 1 shows the diagnostic conditions (SCI, postpoliomyelitis, multiple sclerosis [MS], cerebral palsy [CP], stroke), the cluster of functional impairments (lower limb), activity limitations (moving the body), participation (domains, components), environmental factors (lived or natural), and personal factors (demographic) included in this study as they relate to the ICF framework. The components of participation included in this survey provide an approach to linking ICF classifications of health condition, environmental factors, and personal factors. The mobility impairments and limitations group was selected for developing a measure of participation because the members face similar challenges to fully participate in life activities.³⁴ All phases of this project were approved by the Washington University Human Studies Committee.

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• Fig 1. 

  ICF interaction of concepts: person, environment, and domains of participation included in PARTS/M. Note that the italicized text represents the areas of the ICF covered by the PARTS/M.

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Methods 

Development of Survey Instrument 

The development of the PARTS/M was included in a project that had a goal of producing 2 measures: one of participation and one of environmental barriers and facilitators to participation. Survey questions were based on qualitative studies of participation of people with mobility impairments and limitations in major life activities (PARTS/M).³⁵ The PARTS/M items were developed by using 15 key informant interviews and 15 focus groups using the ICIDH-2 as a contextual framework.¹⁷ In-depth interviews were conducted for 5 people with mobility impairments and limitations (PWMIL), 5 significant others of PWMIL, and 5 health care professionals working with PWMIL. These interviews were coded for activities and for descriptors of antecedents and consequences of participation in activities. The findings were used to frame questions for focus group discussions on participation. Fifteen focus groups (n=98) were conducted: 1 group for each diagnostic condition (SCI, stroke, MS, CP, and polio survivors), 1 group for each of the significant others by diagnostic condition, and 1 group for each diagnostic condition of health professionals. Each focus group identified what people with mobility impairments and limitations do in their daily lives and what barriers and supports to participation they encounter. Thematic analysis was completed by using a process of analytic coding³⁶, ³⁷ until common events and themes emerged. Twenty-five events or activities were identified that had high participation in all the focus groups. Four themes emerged that may be described as components of participation: temporal, evaluative, health-related limitations, and support required to engage in the events. The temporal component of participation included the frequency of doing the activity, the time spent in the activity, and the time spent preparing to do an activity. A variety of candidates for the evaluative component of participation emerged including importance, independence, autonomy, desirability, choice, control, and satisfaction. The health-related limitations component of participation included illness, fatigue, physical capacity, self-concept, and depression. The support component of participation consisted of help from other people, accommodations in social and work rules, assistive technology, building modifications, and attitudes of others.

Candidate items were developed based on the 4 participation components and put into a survey format. To ensure that the items reflected the participation components covered by the focus group participants, 40 members of the focus groups (primarily PWMIL and significant others) completed the draft survey and were interviewed individually to ascertain their view on the items and survey format. Several focus groups were held immediately after the interviews to discuss the survey. This process resulted in 25 activities and 10 questions for each activity designed to cover the 4 components of participation. Further pilot testing reduced the number of events/activities and questions in the participation components. The version of the PARTS/M reported in this article contains 20 major life activities placed into 6 domains used in the activity/participation component of ICF: self-care; mobility; domestic life; interpersonal interactions and relationships; major life areas; and community, social, and civic life. In addition, each participation activity is related to an ICF d code (table 1).

Table 1. PARTS/M Domains, Activities, and ICF d Codes

For each activity in the PARTS/M, a series of questions (table 2) are used to address components of participation including temporal (frequency, time spent), health-related limitations (illness, pain, fatigue), evaluative (importance, choice, satisfaction), and environmental support (help from a person and accommodations, adaptations, or special equipment). The format of temporal questions (time taken or frequency) was determined by the type of activity as were the scale values; the frequency of bathing and taking vacations requires different response sets. The importance question was not asked for participation in the activities of the self-care domain or the activity of moving around inside the home. The focus groups found that asking the question of importance for these activities was inappropriate because these activities are required events in everyone’s life. When the PARTS/M was pilot tested with focus group participants, they stated that the items should be presented in a consistent sequence. This sequence reduced the time taken to complete the PARTS/M.

Table 2. PARTS/M Component Question Sequence

Participation Component	Form of Questions
Temporal
Time taken⁎	How much time do you require for ___________________? or
Frequency†	How often do you ___________________?
Health-related‡	Is your participation ___________________ limited by … (Check all that apply.)
	□ Illness□ Pain□ Fatigue□ Not limited
Evaluative‡	When _______, how much choice do you have compared to others without mobility limitations?
	(Choice includes how, where, when and how often ___________________.)
	□ A lot of choice□ Some choice□ Little choice□ No choice
Evaluative‡	How satisfied are you with your participation in ___________________?
	□ Very satisfied□ Satisfied□ Somewhat satisfied□ Dissatisfied
Evaluative§	How important is it for you to ___________________?
	□ Very important□ Somewhat important□ Somewhat unimportant□ Not important
Supportive‡	How much help from another person do you require to ___________________?
	□ A great deal□ A moderate amount□ Just a little□ None
Supportive‡	How often do you use accommodations, adaptations, or special equipment for ___________________?
	□ All of the time□ Most of the time□ Some of the time□ A little of the time□ Never

The survey respondents were asked to provide information on their demographics, diagnostic conditions, and mobility devices. In addition, the survey included Part 1 and Part 3 of the Personal Independence Profile (PIP),³⁸ the entire RNL,²³ and all items of Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36).³⁹

Procedures 

A total of 604 subjects were used to test the psychometric properties of the PARTS/M (table 3). All used some device to assist them in moving from place to place or had difficulty walking 3 city blocks. Subjects were excluded if they had a history of mental health illness, were under the age of 17, did not have mobility impairments and limitations, were living in a nursing home, or were unable to give informed consent to participate in completing the surveys. Most of the survey respondents (37%) used canes, crutches, or walkers. Power wheelchair (17%), manual wheelchair (14%), and scooter users (15%) and people who did not use a mobility device (17%) were represented in the sample. The sample included polio survivors (28%), SCI patients (23%), MS patients (21%), CP patients (15%), and stroke survivors (13%).

Table 3. Demographics of Samples

Variables	Total Sample(N=604)	Groups
		SCI (n=141)	MS (n=126)	CP (n=88)	Polio (n=169)	Stroke (n=80)
Test age
Mean	51.5	41.4	51.8	39.3	61.0	62.0
Range	17–92	17–79	19–82	17–73	44–83	19–92
Sex
Female	57.5	25.5	80.2	47.7	76.3	48.8
Race
White	88.2	82.7	91.2	86.4	97.6	74.7
Black/African American	9.8	15.1	6.4	10.2	0.6	25.3
Other	2.0	2.1	2.4	3.4	1.8	0.0
Hispanic/Latino origin
Yes	2.1	3.0	0.8	1.2	2.4	2.7
Marital status (>1 option)
Married	47.9	28.1	62.9	10.3	65.9	63.2
Divorced/widowed/separated	22.2	23.0	29.0	9.0	22.2	25.0
Never married	28.5	46.0	7.3	78.2	12.0	10.5
Member of unmarried couple	1.3	2.9	0.8	2.3	0.0	1.3
Annual income
<$10,000	19.5	28.0	8.3	56.3	4.5	16.7
$10,000 to <$25,000	29.2	30.4	29.6	22.5	25.3	42.4
$25,000 to <$50,000	24.4	19.2	32.4	9.8	31.8	19.7
$50,000 to $75,000	13.9	12.0	18.5	5.6	16.9	12.1
>$75,000	13.0	10.4	11.1	5.6	21.4	9.1
Highest level education
Never attended or only through grade 8	4.0	2.2	0.0	13.9	1.2	9.2
Grade 9–11	4.2	5.8	1.6	5.8	2.4	7.9
Grade 12 or GED	29.5	21.9	30.2	45.3	22.6	39.5
College 1–3y	27.5	37.2	33.3	12.8	25.0	22.4
College ≥4y	34.7	32.8	34.9	22.1	48.8	21.1
Employment
Employed	26.7	29.0	17.2	38.1	34.1	8.1

Abbreviation: GED, General Educational Development diploma.

Several approaches were taken to collect this purposeful sample. Charitable organizations, service provider agencies, and advocacy organizations (Paralyzed Veterans of America, Paraquad, GINI International Polio Network, National Multiple Sclerosis Society, United Cerebral Palsy Association, a stroke survivors group) were contacted and asked to mail surveys to members who met the mobility limitation criteria. Newspaper and newsletter articles described the project and the need for volunteers. Those interested contacted the project staff who mailed them consent forms and the surveys. Each survey respondent signed an informed consent and was remunerated $25 for each survey completed.

Surveys were mailed to 701 people with mobility impairments and limitations. The number of completed surveys returned by mail was 471 (67% of those sent). In addition, 133 surveys were sent to people with mobility impairments and limitations before an in-home interview. At the home, the research assistant reviewed surveys with study participants. If the respondent was unable to fill out the survey because of upper-limb or visual impairments, then he/she verbally told the research assistant his/her choice for each item. The total number of completed surveys, mailed and in-home interviews, used for determining internal consistency of the PARTS/M was 604.

A second mailing of the survey was made between 6 and 8 weeks after the first surveys were returned. Of the 471 people receiving this mailing, 371 returned a completed survey (return rate, 79%). For examining the test-retest (stability) of the PARTS/M, the 371 returned mailed surveys were used. Test-retest reliability was assessed by using the split-half reliability option of SPSS^40a by using responses of time 1 and time 2 as the halves.

Data Entry and Analysis 

Responses to the surveys were entered into the computer-assisted testing program Ci3,⁴¹,^b that reduced the chances for errors by allowing entry of only those responses that matched the scale values for each question. SPSS, release 11.5.1,^a for Windows was used to analyze the data.⁴⁰

PARTS/M Scoring 

The items in the PARTS/M are primarily Likert scale items except the health-related limitation question, which is an ordinal set of present/not present items. Activities and domains scores can be computed for the 7 questions on participation: frequency or time spent; importance, choice, and satisfaction; health-related limitations; and personal assistance and environmental accommodations, adaptations, or special equipment. The 5 self-care activities do not include the question of importance in doing the activity. The number of possible scores for all participation questions for the 20 activities is 135, a large number of scores for use in analysis.

To compute a score for each survey respondent that maximally separates them along a single dimension, a principal components analysis (PCA) was used. First-order PCA scores were computed for the 7 questions on participation in each domain. To achieve parsimony, the first principal component score without rotation was used in all analyses. This PCA reduced the participation scores from 7 item scores to 4 composite scores: temporal, evaluative, health-related limitations, and environmental support for each domain. Thus, for each of the 6 domains, 4 participation component scores are available for a total of 24 scores. Then, a second-order PCA was computed by using the first-order PCA scores for each domain. This method provided 1 participation score for each of the 6 domains of the PARTS/M. A total participation score of the PARTS/M was then computed by a PCA of the 6 domain participation scores. For the second-order PCAs, only the first component was retained. Eigenvalues for the subsequent second-order PCA ranged from 2.3 to 3.6. Thus, the use of PCA yielded an overall score of participation, a participation score for each of the 6 domains, and 4 component scores (temporal, evaluative, health-related limitations, environmental support) for each domain (fig 2).

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• Fig 2. 

  Flow chart of PARTS/M factor analyses and scoring.

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Results 

Reliability 

Responses to each survey question for all activities (eg, dressing, vacationing, parenting, working, socializing) and domains (eg, self-care, mobility, domestic life) were examined for internal consistency and stability (table 4). The self-care domain showed the highest internal consistency (.91) followed by the community, social, and civic life domain (.85). The stability (test-retest reliability) values (Pearson r) of all domains were .77 or higher.

Table 4. Internal Consistency and Test-Retest Reliabilities: PARTS/M Activities and Domains

Activities and Domains	α⁎	n	r†	n
Self-care domain	.92	491	.91	260
Dressing	.61	570	.81	339
Bathing	.66	573	.84	344
Bladder care	.71	544	.84	314
Bowel care	.75	536	.85	311
Meals	.58	576	.79	334
Mobility domain	.72	90	.91	12
Move inside home	.57	180	.70	16
Leave home	.40	441	.82	337
Vacations	.54	474	.81	275
Domestic life domain	.72	348	.83	166
Work inside home	.54	503	.80	278
Exterior maintenance	.45	369	.76	180
Interpersonal interactions and relationships domain	.71	132	.77	59
Parenting	.58	267	.75	134
Intimacy	.48	236	.76	111
Major life areas domain	.81	72	.77	29
Employment	.46	177	.79	91
Volunteering	.59	204	.73	99
Money management	.56	473	.69	268
Community, social, and civic life domain	.85	145	.82	69
Community acts	.53	145	.76	169
Religious acts	.50	391	.77	219
Socializing	.48	554	.75	324
Leisure acts	.43	466	.63	239
Active recreation	.42	297	.71	130

The second approach taken to determine the reliability of the PARTS/M was to examine the participation items (eg, frequency or time taken, choice, health limitation, environmental support) used in all 20 activities (table 5). The internal consistency and stability of the temporal items were moderate for both frequency (.64 and .80) and time taken in activity (.70 and .80), respectively. Reliability statistics of internal consistency for the temporal variables are subject to the constraints of waking hours in a day (ie, if one spends a great deal of time on 1 activity, then the amount of time spent on another activity has to be smaller). The evaluative components of participation (importance, choice, satisfaction) had good to high internal consistency and stability. The health-related limitations questions have high internal consistency and moderate stability. The response rates for the support-needed questions (see table 5) were low because subjects answered those items only if they participated in an activity. For the activities of intimacy, employment, and volunteering, subjects either did not answer out of choice (intimacy) or because they were not employed and/or engaged in volunteer activities. Although the reliability coefficients are high, they are associated with small response rates and should be interpreted cautiously.

Table 5. PARTS/M: Internal Consistency and Stability of the Components of Participation

Components	α⁎	n	r†	n
Temporal questions for all 20 activities
Frequency	.64	131	.80	44
Time in participation	.70	194	.81	116
Evaluative questions for all 20 activities
Choice items	.93	119	.76	42
Satisfaction items	.94	115	.91	62
Importance items	.78	129	.82	72
Health-related limitations questions for all 20 activities	.97	192	.75	79
Support needed questions for 14 activities‡
Amount of personal assistance	.84	22	.93	17
Environmental accommodations	.89	12	.92	5
Support needed questions for 11 activities§
Amount of personal assistance	.93	85	.91	33
Environmental accommodations	.92	52	.80	29

Validity 

Content validity was built into the development of the survey through the selection of test items. By asking those with mobility limitations their views on participation in personal interviews, concept focus groups, and content focus groups, the PARTS/M survey captures what people with mobility limitations mean when they describe participating in various activities.

The 604 study participants with mobility impairments and limitations completed the SF-36. The SF-36³⁹ is widely accepted as an indicator of health and quality of life (QOL). The results showed that the SF-36 subscale means for the physical functioning, role–physical, bodily pain, general health, and the vitality domains for the study sample were much lower than the normative values of the SF-36 (table 6). On the social functioning, role–emotional, and mental health subscales, people with mobility limitations scored closer to the mean of the normative group of the SF-36.

Table 6. Validity: Comparison of SF-36 Mean Values for Mobility Limited and Normed Sample

The RNL²³ uses 11 items to assess personal satisfaction with the ability to engage in self-care, home and community mobility, leisure activities, roles, social interactions, and psychologic well-being. The RNL battery of items was correlated to responses participants made to PARTS/M questions on satisfaction for all activities. The canonical correlation, as a measure of relation between the 2 instruments (PARTS/M, RNL), was computed to be .71 (P<.001), a significantly large correlation. This indicates that the choice and satisfaction questions on the PARTS/M show convergent validity with the RNL to measure personal satisfaction with participation in activities.

The PIP was developed to measure components of independence that are applicable to people with a wide variety of disabilities and that are compatible with the philosophy of independent living.³⁸ The battery of items in the PIP2 (items related to the use of equipment for independence) was correlated to the participation component of environmental support (amount of accommodations, adaptations, or special equipment required for participation) in the PARTS/M. This canonical correlation was computed to be .59 (P<.001). This finding suggests that the PIP2 items related to use of equipment for independence are similar to the PARTS/M component of environmental support. The battery of items that examine choice in activities included in the PIP3 was correlated to the evaluative component of participation (choice, satisfaction, importance) for all domains in the PARTS/M except the self-care domain. This canonical correlation was computed to be .99 (P<.001). These findings show that the PARTS/M and PIP3 measure nearly identical evaluative components of participation.

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Discussion 

The PARTS/M is a reliable and valid measure of participation in major life activities for people with functional mobility impairments and activity limitations in environments in which they live. By using the ICF as framework, the PARTS/M provides a measure of many components of participation included in existing but separate instruments. This allows the user to assess each subject’s current level of participation that he/she deems to be important and to provide a guide for changes that may help him/her achieve his/her individual aspirations, not how they compare with “normal” people.³⁴ The PIP, RNL, and PARTS/M all address subjective responses to participation in life activities. The responses to questions on choice in the PARTS/M were highly correlated with responses to PIP3 choice items, indicating that both instruments are measuring similar content. Satisfaction with participation in activities are included in the PARTS/M and RNL and appear to be highly related. The PIP2 independence items and the PARTS/M environmental-support items generated nearly identical responses from the participants of our study.

Interventions made during rehabilitation are generally measured by instruments that assess what self-care activities patients can do while at the rehabilitation facility. Such measures do not predict well who participates fully in community settings.⁴², ⁴³, ⁴⁴, ⁴⁵ Outcome measures used to describe participation in the community often ask questions regarding what people with a variety of impairments can or would do in their daily activities. This results in very different assessments of the level of disability from measures that ask people what they actually do.⁴⁶, ⁴⁷, ⁴⁸ The PARTS/M shares some features of QOL measures (satisfaction, health status) but differs in important ways. Health-related quality of life (HRQOL) measures are multidimensional and often include cultural, psychologic, interpersonal, spiritual, financial, political, temporal, and philosophic domains.⁴⁹ PARTS/M and HRQOL measures add the person’s perspective of how his/her health status influences his/her quality of life, which is essential information for good clinical care.⁵⁰, ⁵¹ HRQOL measures often lack clarity, use single or multiple life dimensions, rarely provide a conceptual definition of HRQOL, neglect important social and technologic supports, and lack sensitivity to important nonmedical life changes.⁵¹, ⁵², ⁵³ Applying HRQOL measures to assess the lives of people with disabilities is problematic because they are not necessarily unhealthy but have limitations that HRQOL surveys score as poor health status.⁵⁴ For example, walking distance is often included in HRQOL and is positively related to good health and high QOL. The comparison of the SF-36 normative values with this study sample’s mean SF-36 values illustrate that the use of the SF-36 for people who are unable to walk may be a misleading indicator of their QOL.⁵⁵

The PARTS/M has several limitations. Many components of participation suggested by the study focus groups were not included in the PARTS/M including level of independence, control, autonomy, desirability, needs, time taken to prepare to do an activity, management of people providing help, and quality of assistive technologies. Thus, the PARTS/M is limited in the scope of components of participation that are measured. The specific environmental context of participation is not covered in all PARTS/M domains, which requires the survey respondent to cognitively combine experiences across specific settings. The time needed to complete the PARTS/M varies from 25 to 40 minutes for a web-based version to 60 to 90 minutes for a hardcopy version. Although no complaints were received from study participants, the amount of time needed to complete the PARTS/M may be prohibitive in some settings. The PARTS/M was developed to measure people with mobility impairments who live and participate in communities and does not reflect a national random sample. Thus, the PARTS/M survey may not be applicable to the total population of people with mobility impairments and limitations. The diagnostic conditions included in the sample did not include the wide range of conditions that can result in mobility impairments and limitations including arthritis, lower-limb amputation, circulatory, and respiratory diseases and diabetes. Because this survey was developed for people with mobility impairments and limitations, the PARTS/M is unlikely to be applicable for use with people with other types of impairments. However, the approach used to form the PARTS/M could be used to develop measures for other clusters of impairments (eg, blind and low vision, hard of hearing and deaf, cognitive impairments).

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Conclusions 

The PARTS/M can be used to test the concept that disability incorporates not only personal limitations but also the environmental factors that may restrict or facilitate participation in doing activities in lived environments. The PARTS/M provides a measure for extending beyond basic functioning (eg, hearing, seeing, walking) and basic body functions (eg, bowel and bladder control, dressing, grooming) to participation in major life activities (eg, travel, parenting, intimacy, leisure, work) that could provide evidence for social policy formation and court interpretation of existing legislation (eg, ADA, Social Security disability income, Medicare, Rehabilitation Act). If the PARTS/M measure were applied to specific subsets of diagnostic or mobility device users, then normative values from these studies could be developed that would allow for comparisons to people with similar impairments. The PARTS/M could be used to discover how PWMIL evaluate their own individual response to participation importance, choice, and satisfaction, not an evaluation of their participation imposed by others. Finally, the PARTS/M allows a comparison of type and level of support used to participate in a broad array of activities by PWMIL. The PARTS/M offers a way to measure full participation for PWMIL that does not rely on comparisons of their participation to people with vastly different physical capabilities (ability to walk) and their environments (steps).

The study of disability requires translation of complex conceptual models into measures that are reliable and valid. Measuring capacities of people to perform activities in the controlled settings of medical treatment facilities is necessary but clearly not sufficient for understanding what people with disabilities actually do in their lived environments. If the argument is accepted that disability is not a property of the person or the environment but an interaction of the person in his/her environments that limits his/her engagement in activities, then the expression of disability can be influenced by a reduced capacity, environmental barriers, or both. These interactions change over time, age, preferences, settings, technology, and social policies. To address the influence of these changes in the expression of disability, longitudinal studies are needed using measures that get at the relations among the subject’s characteristics, his/her participation in activities, and his/her environments.⁵⁶

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