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. 2008;31(2):145–156. doi: 10.1080/10790268.2008.11760705

Participation Following Traumatic Spinal Cord Injury: An Evidence-Based Review for Research

Report on the National Institute on Disability and Rehabilitation Research Spinal Cord Injury Measures Meeting

Quality of Life/Participation Committee:, Susan R Magasi 1, Allen W Heinemann 2,3, Gale G Whiteneck 4
PMCID: PMC2565477  PMID: 18581661

Abstract

Background/Objective:

To report an evidence-based review of participation instruments that have been used in spinal cord injury (SCI) clinical practice and research.

Methods:

Rehabilitation literature was searched for instruments used by at least 2 independent SCI researchers since 2000. Each instrument was reviewed by 2 committee members. One person reviewed the scale and documented the level of use and psychometric properties. The second committee member verified the values and made suggestions for changes.

Results:

Three instruments met the review criteria: Craig Handicap Assessment and Reporting Technique (CHART), Assessment of Life Habits (LIFE-H), and the Impact on Participation and Autonomy (IPA). Each instrument incorporates different perspectives in the measurement of participation. The LIFE-H uses a qualitative approach, whereas the CHART adopts a quantitative approach; both are based on societal norms of participation. In contrast, the IPA integrates individual choice and control in defining participation. CHART is the most widely used instrument, although its development predates the development of the ICF. The IPA is a relatively new instrument, and its psychometric properties have only recently published.

Conclusions:

Continuing research is needed to develop conceptually and psychometric valid measures of participation for use with people with SCI. Priorities include understanding the relationship between objective and subjective indicators of participation, describing the dimensions of participation, and identifying appropriate measurement models and psychometric approaches to evaluate the nonhierarchical character of participation. Researchers and clinicians should be aware of the strengths and limitations of existing measures to make informed decisions about appropriate instruments.

Keywords: International classification of function; Disability; Participation; Outcome measures; Rehabilitation research; Spinal cord injuries; Quality of life; Measurement, instruments

INTRODUCTION

The past 3 decades have seen substantial improvements in the medical, technologic, and pharmacologic management of spinal cord injury (SCI) (1). As a result, people with SCIs are living longer and achieving greater functional independence. With greater life expectancies, the focus of rehabilitation and intervention for people with SCI has shifted from medical management of the acute condition to issues that affect quality of life and community participation.

Participation is defined as “involvement in life situations” (2) and is a core concept in all major models of disability, including the World Health Organization's (WHO) International Classification of Functioning, Health and Disability (ICF) (2), the Institute of Medicine's Models of Disability (3), and the National Institute on Disability and Rehabilitation Research's Long-Range Plan (4). In the United States, participation is the hallmark of legislative and executive initiatives including the American with Disabilities Act (5) and the New Freedom Initiative (6). Furthermore, participation is related to a person's ability to be an active and contributing member of society and, as such, is a highly valued rehabilitation outcome for people with disabilities (including those with SCI), their care partners, and society at large (7).

The WHO has been at the forefront of conceptualizing the impact that injury and illness has on people's lives (8). In 1981, the WHO introduced the International Classification of Impairments, Disability, and Health (ICIDH) (9). This model traces a linear, unidirectional path from individual impairments (such as paralysis secondary to SCI) to “handicap” at the social level (such as the inability to fulfill life roles like worker, spouse, or parent). “Handicap” was understood as disadvantage in social and economic life that people with disabilities experience, either because of their impairments or the social stigma that their impairments elicit (10). The ICIDH was criticized on multiple fronts, including its use of pejorative language and its failure to account for the role that environmental factors (such as inaccessible environments or punitive employment policies) have on an individual's ability to assume desired, developmentally appropriate roles.

In 2001, the WHO substantially revised the ICIDH and replaced it with the ICF. This revision shifted the emphasis from “the consequence of impairment and disease” to the “components of health” (8). The concept of “handicap” was replaced with “participation,” which is defined as “involvement in life situations.” In addition to this shift in nomenclature from “handicap” to the more neutral and less pejorative term of “participation,” the ICF also strives to reflect the dynamic interplay between impairments, activities, participation, health conditions, personal characteristics, and contextual factors. In particular, the ICF depicts participation as being influenced by environmental factors, personal characteristics, and impairments and activity limitations. Although the ICF conceptually distinguishes activities from participation in both its model of disability and its definitions, the ICF provides only 1 list of codes for activity and participation, leaving the user to decide whether all codes apply to both concepts or whether codes in some domains are activities, whereas codes in other domains reflect participation. This failure to distinguish activity from participation has been described as a step backward (7), and the Institute of Medicine has prioritized clarifying this conceptual ambiguity (3).

Previous research has consistently shown that people with SCI experience barriers to participation across many major life domains. Decreased employment opportunities (11,12), limited social support and family role functioning (13,14), limited access to recreational and leisure activities (15), and a lack of accessible transportation (16–18) have been identified as barriers to participation for people with SCI. Dijkers' meta-analysis of quality of life for people with SCI identified participation as a key component and contributor to quality of life (19). Participation is more closely related to quality of life than either level of impairment or functional performance (19). Therefore, participation outcomes are significant both in their own right and in their relationship to overall life satisfaction and quality of life of people with SCI.

Given the importance of participation to people with disabilities, disability policy, rehabilitation research, and clinical practice, it is imperative that clinicians and researchers have access to outcome measures that accurately measure participation in ways that are both conceptually and psychometrically sound. Thus, the purpose of this study was to conduct an evidence-based review of SCI literature to identify appropriate participation outcome measures for use in research and practice.

METHODS

As part of a National Institute on Disability and Rehabilitation Research (NIDRR)-sponsored review of outcome measures in SCI research, international experts in outcome measurement and SCI were assembled and divided into workgroup committees based on their area of clinical expertise to conduct a comprehensive review of the SCI rehabilitation research literature. Using an evaluation scheme developed by Johnston and Graves, outcome measures were systematically reviewed, and their validity in SCI was graded using a 4-star system (20). The star ratings were as follows: • = no formal validity/reliability published, * = questionable or insufficient validity, ** = minimal validity, *** = content and metric reliability and validity shown, and **** = extensively validated and widely used. This paper reports the findings of the participation workgroup. Major research databases, including PubMed, PsychINFO, and CINAHL, were searched for research studies that had participation as a key outcome using the search terms “spinal cord injury and participation,” “spinal cord injury and community integration,” and “spinal cord injury and handicap” (the WHO term used to define involvement at a societal level before the adoption of the ICF). Three inclusion criteria were required for an instrument to be included as part of this study: (a) related to or used with people with SCI, (b) cited in the literature within the period 2000 through 2007, and (c) used by at least 2 researchers or research groups during this time period. Once instruments were deemed eligible for inclusion, a comprehensive review of the research literature was conducted to evaluate each instrument's conceptual foundations and psychometric properties using a formal set of assessment criteria (Table 1). Two individuals reviewed each instrument. Preliminary findings were presented at a preconference of the 2006 American Spinal Injury Association meeting that was sponsored by the NIDRR. In preparation for publication, the literature review was repeated for 2005 to 2007, and relevant information is included in this manuscript.

Table 1.

Comparison of Psychometric, Clinometric, and Conceptual Properties of Participation Measures

graphic file with name i1079-0268-31-2-145-t01.jpg

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RESULTS

Although there are a number of published measures of participation, only 3 met the inclusion criteria for review in this study: the Craig Handicap Assessment and Reporting Technique (CHART), the Assessment of Life Habits (LIFE-H), and the Impact on Participation and Autonomy (IPA). Other instruments were excluded because they lack widespread application beyond the developers' team or evidence of application or validation on people with SCI. For example, participation and community integration are extensively studied in people with traumatic brain injuries, and a number of instruments have been developed for this population (eg, the Participation Objective, Participation Subjective) (21). Table 1 summarizes the psychometric, clinometric, and conceptual properties of these 3 participation instruments.

Craig Handicap Assessment and Reporting Technique

The CHART was developed by Whiteneck et al (22) for people with SCI and is the most widely used participation instrument in rehabilitation research). The CHART is based on the ICIDH, the precursor to the ICF, and was developed to provide a simple, objective measure of the degree to which impairments and disabilities result in handicaps after initial rehabilitation. The CHART contains 32 items across the 6 WHO domains of handicap including physical independence, cognitive independence, mobility, occupation, social integration, and economic self-sufficiency. The validity and reliability of the CHART have been well established among both cross-disability and SCI samples. The CHART has been evaluated using both item response theory (IRT) and the Rasch model. The CHART has a ceiling effect for high functioning people with SCI, particularly those with ASIA motor scores >50, and the distributions of the subscales and total scores are skewed.

Although the CHART has been criticized as a measure of participation because it was developed as a measure of the ICIDH concept of handicap rather than the ICF concept of participation (23,24), the CHART items have been shown to correspond well to the participation codes of the ICF (23). A more significant limitation of CHART is its focus on objective performance of normative life roles. Unlike some newer measures of participation, it does not assess respondents' subjective assessment or satisfaction with life roles or allow the personal preferences of the individual to be considered in the scoring.

The Assessment of Life Habits

The Assessment of Life Habits (LIFE-H) was developed by Fougeyrollas et al (25) to quantify social participation. It is based on the Disability Creation Process Model (25) and defines participation as resulting from the interaction between personal and environmental factors. The LIFE-H operationalizes participation as life habits, defined as “those habits that ensure the survival and development of a person in society throughout life” (25). Habits are daily activities and social roles that are culturally defined according to age, sex, and sociocultural identity. The LIFE-H includes both habits related to survival and those engaged in by choice (26).

The LIFE-H consists of 240 items in 32 categories of life habits across 12 primary domains, including nutrition, fitness, personal care, communication, housing, mobility, responsibility, interpersonal relations, community, education, employment, and recreation. The LIFE-H's psychometric properties have been evaluated for people with SCI. It has been evaluated using IRT and the Rasch model; the measurement properties seem to be acceptable (27).

Although the LIFE-H has been used with SCI samples, there is a paucity of published research documenting the instruments use by researchers outside of Quebec and the developers' research group, indicating that the LIFE-H has not enjoyed widespread adoption by other rehabilitation researchers. The burden of administration of the long form may limit its adoption by rehabilitation clinicians and researchers. Although the LIFE-H strives to capture the dynamic interplay between the person and their environment that is central to current definitions of participation, the instrument's emphasis on action may bias scores against people with SCI whose impairments limit manipulation, mobility, and sensation (10).

Impact on Participation and Autonomy Questionnaire

The IPA was developed by Cardol et al (28) and is based on the definition of participation in the ICIDH-2 (an intermediate version between the ICIDH and the ICF) to measure participation and autonomy from an insider's perspective. Autonomy is included because the developers contend that decisional autonomy (the ability to exert choice and control over one's life) is a key determinant of participation. The IPA assesses participation restrictions using 32 items across 5 subdomains, including autonomy indoors, family role, autonomy outdoors, social relations, and paid work and education. An additional 9 items assess how problematic participation restrictions are for the individual.

The IPA has strong theoretical foundations related to both perceived participation and the concept of autonomy. The IPA is a relatively new instrument designed to assess perceived participation from the perspective of people with disabilities. It is used more extensively in Europe; there is no published work in North America. Through August 2007, 2 recent reports documented the IPA's psychometric properties in SCI samples (39,40). The instrument shows promise, but additional research is needed to document its use as a participation measure in general and for people with SCI in particular.

DIRECTIONS IN PARTICIPATION MEASUREMENT

Although outcome measurement and instrument development for participation is in its infancy, a number of promising instruments have been developed since the inception of this project, including the Participation Measure for Post-Acute Care (PM-PAC) (46), the Participation Survey/Mobility (PARTS/M) (47), and the PRO-PAR (24). The PM-PAC under development at Boston University is “an attempt to construct a fixed-length questionnaire that measures participation as conceptualized by the ICF” (46). The PARTS/M was developed at Washington University and is designed as a self-report survey that addresses participation in major life activities by people with mobility impairments. The authors state that the “components of participation included in this survey provide an approach to linking ICF classifications of health condition, environmental factors, and personal factors” (47). The PRO-PAR was developed through a multisite collaboration and was “constructed to complement assessments like the FIM instrument, with participation items designed to cover higher level, more complex life experiences included within the ICF domains of participation” (24).

Because the literature addresses the initial psychometric testing on these instruments and does not show their specific application to the SCI population, these instruments did not meet the eligibility criteria for inclusion in the formal evidence-based review process. These instruments do, however, represent the future of outcome measurement of participation and seek to address limitations of existing measures. Table 2 compares the conceptual and psychometric properties of these 3 instruments and their relative strengths and limitations.

Finally, the authors are part of a research team that is using a grounded theory approach to guide the development of a measure of participation for people with disabilities, especially those who are disenfranchised through the experience of disability and economic or social disadvantage. Eighteen focus groups (n = 218) were conducted with key rehabilitation stakeholders, including consumers, care partners, clinicians, payers, and policy makers. Their insider and outsider perspectives were used to develop a bank of items to measure participation. The community participation indicators (CPIs) include measures of objective performance, subjective evaluation, and participation values that shape and give meaning to participation (48). The instrument reflects stakeholders' feedback that participation is more than just the performance of a set of activities but is also an expression of core values and subjective appraisal of meaning and satisfaction. The CPI has been pilot tested in a population-based sample of 912 people with and without self-identified disabilities. The psychometric properties of the instrument are being evaluated with specifically targeted subgroups of people with disability, including people with SCI.

DISCUSSION

Despite the recognition that participation is an important component of health, the development of instruments designed to capture the essence of participation has not reached fruition (7,24,47). There is no “gold standard” for measuring participation among people with disabilities, in general, nor among people with SCI, in particular. Furthermore, existing instruments may be inadequate to capture the dynamic interaction between the person and the environment inherent in the ICF definition of participation (10,23,49). Therefore, the onus for selecting appropriate measures of participation is placed on individual researchers and practitioners to consider carefully which instrument best meets their needs.

Each of the instruments reviewed incorporates different perspectives in the measurement of participation. For example, the LIFE-H uses a qualitative approach, whereas the CHART adopts a quantitative approach (26). The LIFE-H and the CHART are based on societal norms of participation, whereas the IPA integrates individual choice and control into the framing of participation. The IPA addresses the call for greater integration of the subjective experience of participation from the perspective of people with disabilities themselves (41,50).

Although the CHART is the most widely used and researched instrument, its development predates the development of the ICF. The CHART was designed to assess the domains of handicap in the ICIDH rather than the domains of participation in the ICF, but CHART items reflect many of the participation codes in the ICF. More importantly, the CHART predates the calls for including subjective appraisals and personal preferences of respondents in participation measurement. In this light, the CHART's focus on objective, norm-referenced performance is a limitation. The LIFE-H was designed to capture the dynamic interplay between individual's impairments and the environment that is central to contemporary definitions of participation. The review of Dijkers et al (10) of participation measures reported that the LIFE-H reflected the spirit of the WHO's conceptualization of participation; however, its theoretical grounding in the Disability Creation Process may serve as a barrier to its widespread adoption as the ICF gains ascendancy as the dominant model for participation. The IPA is a relatively new instrument, and published reports of its psychometric properties are only beginning to appear in the research literature.

Just as the 3 instruments included in this formal review span the continuum from objective (CHART) to subjective (IPA) assessments, the newer participation measurements also reflect these different perspectives. The PAR-PRO asks objective questions about the frequency of participation; the PM-PAC items ask for perceptions of difficulty of participation; and the PARTS/M records both objective performance and subjective satisfaction. The issue of how best to incorporate the subjective and objective sides of participation into measurement will remain until a better conceptualization of participation emerges and empirical evidence of the relationship between these 2 components (along with their relationships to other concepts and measures) is available.

Another unresolved issue is the dimensionality of participation. Beyond the potential for an objective and a subjective dimension, each instrument includes different domains of participation. The 6 CHART subscales reflect the domains of handicap in the ICIDH; the LIFE-H is based on the Disability Creation Process, the IPA claims the ICIDH-2 as its model, and most others cite the ICF as their conceptual base, but none has subscale structures matching the ICF domains. Comparability among participation measures is hampered by this lack of common domains. The conceptual blurring between activity and participation generated by the ICF adds to the confusion. Clear conceptual distinctions between the concepts of activity and participation in the ICF are needed before the domains of participation can be articulated and empirically verified.

As our conceptual understanding of participation has evolved over the past 20 years, so has measurement theory and technology. Measurement experts have made great advances in instrument development through the application of contemporary psychometric methods. IRT, of which the Rasch model is 1 variation, is a family of mathematical models used to determine the characteristics of test questions and to estimate the trait level of people on the underlying dimension being measured (51,52). IRT presumes an item set is unidimensional (ie, that the items measured by an instrument represent a single latent trait [53]) and that that trait can be measured using a hierarchy of items arrayed from easiest to hardest (54)]. Although classical measurement theory dominated the 20th century and is the basis for most measures of health outcomes, these instruments are only able to provide a basic understanding of the instruments properties (53,54). Contemporary measurement theory, such as IRT and the Rasch model, offer more powerful psychometric analysis, greater precision, and flexibility and are rapidly becoming the methods by which instruments are developed and validated (55,56). However, developers of new participation measures struggle with the failure of participation items to form concise hierarchies, given the extent to which personal preferences determine in which areas of life people chose to participate. Consensus has not been reached about the use of modern psychometric methods to participation measurement.

RECOMMENDATIONS AND CONCLUSIONS

There is no gold standard for measuring participation among people with disabilities in general and people with SCI in particular. The CHART is the most widely used and researched instrument, but it is limited by ceiling effects, nonnormal distributions, the use of norm-referenced scoring not taking personal preference into consideration, and the absence of subjective assessments by respondents. Although other participation instruments address some of these issues, no tool has emerged as the consensus replacement for CHART to measure participation in SCI. The LIFE-H does a better job of capturing the dynamic interplay between individual impairments and the environment that is an integral part of contemporary definitions of participation. Although it has been tested and its use among people with SCI is documented, the LIFE-H has not been widely adopted in research or clinical practice. Although the IPA is conceptually sound, reports of its use as an outcome measure in SCI are only starting to be documented in the research literature. Several new participation measures show promise for their conceptual and psychometric properties, but their applicability to SCI has not been established.

Ongoing efforts are needed to develop conceptually and psychometric valid measures of participation to be used with people with SCI. Particular priority should be placed on understanding the interplay between objective and subjective indicators of participation, determining the dimensionality of participation, and identifying the most appropriate measurement model and psychometric tools to fit the nonhierarchical character of participation. Until such time as these priorities are achieved and improved measurement of participation is available, researchers and clinicians must be aware of the strengths and limitations of existing measures to make informed decisions about which instruments to use.

Acknowledgments

The authors acknowledge the contributions of all the committee members, especially Dr Luc Noreau for his review of the LIFE-H.

Footnotes

This work was funded by the National Institute of Disability and Rehabilitation Research through the Model Systems on Spinal Cord Injury (grant #H133N060014) and the Rehabilitation and Research Training Center Grant on Measuring Rehabilitation Outcomes (grant #H133B040032).

This review is part of a series papers generated from the NIDRR SCI Measures Meeting.

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