Best practice in the use of outcome measures (OMs) is critical to the field of rehabilitation. Standardized and effective OM use allows evaluation of which interventions are effective and helps clinicians objectively evaluate patient progress.1 Although the use of standardized OMs has increased,1,2 barriers continue to limit their implementation in practice,1,3,4 with more than 50% of physical therapists in one study reporting that they do not regularly use standardized OMs.1 Barriers to clinicians' OM use include: limited time to complete and analyze OMs1,3,4; limited clinician knowledge about OMs3,4; and lack of clinician time, knowledge, and resources to access up-to-date information about OMs.3,4
The American Physical Therapy Association (APTA) has implemented several initiatives to minimize these barriers and facilitate best practice related to OMs. The Neurology Section developed a regional course addressing OM use in people with neurologic diagnoses titled “Neurologic Practice Essentials: A Functional Toolbox,” which has now been modified and transitioned to an online format. The Section on Research developed the Evaluation Database to Guide Effectiveness (EDGE) Task Force in 2006 to advance best practice for use of OMs.5 The Neurology Section, in coordination with the EDGE Task Force, has organized task forces to make recommendations on the use of OMs in neurologic populations. Individuals can use these recommendations to more effectively and objectively develop a plan of care and report patient progress, as well as strengthen their clinical reasoning to continually improve patient care. To date, EDGE recommendations regarding OMs are available for the following patient populations: stroke, multiple sclerosis (MS), spinal cord injury (SCI), traumatic brain injury, Parkinson disease, and vestibular disorders. The EDGE task forces are disseminating their summaries of evidence and recommendations in partnership with the Rehabilitation Measures Database (RMD), a database developed to help clinicians and researchers use OMs effectively to assess patient outcomes. These resources facilitate use of OMs and alleviate barriers that clinicians face in utilizing and implementing OMs in practice, such as lack of time, knowledge, and resources.1,3,4
The purpose of this article is to report the process, results, and impact of the recommendations from the Spinal Cord Injury EDGE Task Force (SCITF). This report includes: (1) the SCITF's evaluation of the psychometric properties and clinical utility of a battery of OMs for individuals with SCI; (2) SCITF recommendations for the use of these OMs in clinical, research, and education settings; and (3) the dissemination of these recommendations.
Method
A modified Delphi process,6–8 described below, was used to reach consensus on recommendations for OMs and occurred over a 3-step consensus process (Figure) adapted from the methods of the MS and Stroke EDGE task forces.9,10 In October 2011, the Neurology Section of APTA recruited volunteers for the SCITF, and interested volunteers submitted applications. Neurology Section leadership selected the SCITF chairperson and members (Tab. 1) based on each applicant's evidence of working knowledge of OM psychometrics, ability to read and interpret literature, experience working with common clinical measures in people with SCI, and ability and willingness to complete the tasks involved in the SCITF proceedings (eg, Combined Sections Meeting [CSM] attendance, writing summaries of the research literature, ongoing communication).
Schematic of Spinal Cord Injury Evaluation Database to Guide Effectiveness (EDGE) Task Force process. RMD=Rehabilitation Measures Database.
Spinal Cord Injury Evaluation Database to Guide Effectiveness (EDGE) Task Force Membersa
Step 1–Initial Meeting
The initial meeting of the SCITF occurred in Chicago, Illinois, at the APTA CSM. The goals of this meeting were to determine: (1) the process the SCITF would use for consensus, (2) which measures the SCITF would review, (3) appropriate subgroups to consider within SCI when developing recommendations, and (4) which rating scale would be used to evaluate the OMs. Unanimously, the SCITF agreed that consensus for decision making would be achieved when a minimum of 80% agreement among members was met.
The chairperson compiled a master list of OMs that represented all domains of the International Classification of Functioning, Disability and Health11 (ICF) used in people with SCI from which the SCITF would select the most appropriate OMs to evaluate. Resources used to develop this master list included: literature on SCI, systematic reviews, resources from the Spinal Cord Injury Rehabilitation Evidence (SCIRE) Project and Spinal Cord Outcomes Partnership Endeavor (SCOPE), recommendations from the education consensus report from APTA, SCI Special Interest Group recommendations, RMD, and SCITF recommendations.12–25 Relevant literature was obtained via a PubMed search using the term “spinal cord injury” paired with each of the following key words: “OMs,” “clinical measures,” “assessment tool,” “measurement,” and “ICF,” including articles found through the “similar articles” feature of the PubMed search engine.
In this initial meeting, the SCITF eliminated OMs that were not prevalent in the literature, lacked applicability to the SCI population, measured constructs not treated routinely or directly with physical therapy (eg, depression, anxiety, cognition, sexual function, incontinence), or were constructs secondary to SCI (eg, integumentary measures for measurement of pressure ulcers). The group discussed every proposed OM, and appropriate literature was evaluated before making a decision on a case-by-case basis through at least 80% group consensus.
Next, the SCITF decided how to rate each OM in step 3 of our process. The SCITF elected to use an adaptation of the 4-point rating scale used by the MS and Stroke EDGE groups, as shown in Table 2.9,10 This scale incorporates an evaluation of the psychometrics of an OM (including reliability, validity, and available data to guide interpretation) and clinical utility of the OM. Examples of data to guide interpretation include: sensitivity to change, minimal detectable change, minimal clinically important difference, and floor and ceiling effects. These items are of importance clinically, as they assist clinicians in goal setting and evaluating how patients are responding to intervention. The score of 2 was modified from “Unable to Recommend” to “Reasonable to Use, but Limited Study in Target Group.” This change in wording clarified that clinicians may appropriately elect to use an OM that has been validated in a related patient population when there is no OM available that has been validated in the SCI population. Because psychometric data may not be generalizable between different patient populations, it is recommended to use OMs and psychometric data (eg, validity, reliability, minimal detectable change, minimal clinically important difference) in patient populations that are similar to those in which they have been studied whenever possible.26 Therefore, an OM had to have psychometric data specific to individuals with SCI in order to receive a rating of “Recommended” or “Highly Recommended.” In addition, “Highly Recommended” measures had excellent reliability and validity and data to guide interpretation, as well as excellent clinical utility (Tab. 2). The SCITF utilized the criteria defined on RMD, compiled from multiple sources,27–29 to assist in establishing whether reliability and validity were deemed excellent, good, or poor.25 For example, validity correlation coefficients above .6 were considered excellent.25
Spinal Cord Injury Evaluation Database to Guide Effectiveness (EDGE) Task Force Outcome Measure Rating Scale
The SCITF rated each OM in a total of 8 categories: 5 related to clinical use of OMs, 2 related to entry-level physical therapy education, and 1 related to the OM's use in intervention research. The categories related to clinical use included the following subgroups of people with SCI: (1) motor complete (American Spinal Injury Association Impairment Scale [AIS] A or B), (2) motor incomplete (AIS C or D), (3) chronic SCI (>6 months postinjury), (4) subacute SCI (3–6 months postinjury), and (5) acute SCI (0–3 months postinjury). Each OM was rated in these 5 categories using the 4-point scale described above. The SCITF also considered rating the OMs based on other categories, including tetraplegia versus paraplegia and levels of care. Through discussion, the SCITF reached a unanimous decision that levels of acuity and AIS classification best described the spectrum of people with SCI and resulted in a clear delineation of one group from another, allowing the assignment of a single rating in each category.
Each OM was also rated “yes” or “no” in the following categories related to education and research: (1) teaching entry-level physical therapist students to administer the OM, (2) exposing entry-level physical therapist students to the OM, and (3) use of the OM in intervention research based on available psychometric data and the strength of other OMs measuring the same construct.
The SCITF completed an “EDGE form” (Appendix) for each OM, listing the following: the name of the OM, the ICF domain, the constructs measured, recommendations and ratings in each subgroup of SCI, and relevant references. The SCITF's EDGE form was adapted from that used by the MS and Stroke EDGE groups,9,10 with the primary change to the SCI EDGE form being removal of the summary of the OMs' psychometrics. Instead, psychometrics would be reported in, and linked to, an RMD summary (see eAppendix, and described below).
A new collaboration between the RMD and the EDGE task forces was established with the SCITF, which allowed the SCITF and the RMD to work together to create and disseminate information more effectively and efficiently. The RMD is an online database developed by the Center for Rehabilitation Outcomes Research (CROR) at the Rehabilitation Institute of Chicago (RIC). The RMD provides evidence-based summaries and has a large audience, with an average of 62,753 users per month and an average of 196,963 page views per month in 2014. As part of the SCITF process, a summary of each OM was updated or added to the RMD. Prior to this collaboration, the EDGE task forces and RMD developed separate summaries of OMs. Now, these summaries would be combined for a more comprehensive, user-friendly, and up-to-date product. The EDGE document and RMD summary were developed as a pair of documents meant to be used together. The EDGE document provides the rating, and the RMD summary provides the backup information and evidence for the rating.
Finally, the chairperson divided the SCITF members into pairs of reviewers and divided the list of remaining OMs by construct. In preparation for proceeding to step 2, each pair was assigned an equal number of OMs based on preferences, expertise, and consensus from the task force.
Step 2–Primary and Secondary Reviews
The next stage of the modified Delphi process occurred over a 6-month period (February 2012 through August 2012). Each pair of reviewers decided which member would perform the primary review on each of their assigned OMs. The purpose of the primary review was to complete an EDGE form for an OM and either (1) a peer review of an existing RMD summary with the addition of updated SCI information or (2) creation of a new RMD summary if one did not yet exist. The primary reviewer conducted a literature search for relevant research, which was assisted by RMD staff members who provided the results of a separate literature search. The literature was then reviewed and synthesized to establish the ratings, RMD summaries, and EDGE forms. Upon completion, the primary review was passed to the secondary reviewer for review, discussion, and modification until agreement on the content of the RMD summaries, the EDGE forms, and the ratings was reached. During this time, the SCITF had periodic conference calls to ensure progress and consistency among reviewers.
Step 3–Group Consensus
The final stage of the modified Delphi process was group consensus and occurred over 2 months (September 2012 to November 2012). With an 80% agreement requirement for consensus, 7 of the 8 members of the SCITF had to agree on each rating. The chairperson compiled all EDGE forms and all RMD summaries for each OM and created a confidential online survey. The SCITF members were asked whether they agreed or disagreed with the EDGE rating for each of the 8 categories related to acuity of injury and AIS in each OM, using the EDGE forms and updated RMD summaries as evidence for the rating. If an individual disagreed, he or she was asked to provide a rationale in the survey. The chairperson and an SCITF member (R.T.) reviewed the results of the survey. Each category that did not achieve at least 80% consensus was reviewed in detail to ensure the rating scale was applied correctly and to consider each SCITF member's feedback. The SCITF members also provided comments on categories that did achieve initial consensus. Together, 2 SCITF members (J.H.K. and R.T.) incorporated feedback into the EDGE forms and RMD summaries. The descriptions of the action taken and updated documents were distributed to the SCITF members, and discussions were held via emails and conference calls until consensus on ratings was reached. The SCITF reviewed all changes for final consensus.
In order to disseminate these summaries to a wide audience, the final results were posted on the Neurology Section website, and summaries of OMs with links to the EDGE forms were posted on RMD website. Number of page views for each of these websites was examined as evidence of the dissemination of the information contained in the SCITF summaries and recommendations. A summary of the SCI EDGE process is represented in the Figure.
Outcome
In the initial meeting, the master list of 133 OMs was narrowed down to a list of 63 OMs: 35 performance-based measures, 27 self-report measures, and 1 measure with components of both performance-based and self-report measures. The SCITF determined that this list of 63 OMs (eTable) represented a comprehensive list of measures that broadly represented constructs addressed by physical therapists within all categories of the ICF. There were 17 measures in the Body Structure and Function domain, 30 in the Activity domain, and 16 in the Participation domain. Each construct had a variable number of measures within its group (eTable). The SCITF also determined that recommendations could reasonably be completed in the 1-year time frame allotted.
In step 3 (group consensus), 40 of 63 measures received at least 87.5% agreement across all categories of ratings on completion of the initial survey. At the end of step 3, 20 measures were given a rating of “Recommended” or “Highly Recommended” in both incomplete and complete SCI categories. Only 14 OMs were given a rating of “Recommended” or “Highly Recommended” in at least 2 of the 3 acuity-level categories. Twenty-three OMs were identified as important for entry-level education, with the recommendation that students be taught to administer 9 of these OMs and exposed to the remaining 14 OMs. Last, 32 OMs were recommended as appropriate to use in research studies.
More specifically, results revealed both well-represented and underrepresented areas. In the Body Structure and Function domain of the ICF, none of the measures for tone or cardiovascular function received a rating higher than a 2 in any category. In the Activity domain, underrepresented constructs included balance, upper extremity (UE) function, and wheelchair skills. Only 1 of 7 balance measures (ie, Berg Balance Scale [BBS]) and 2 of 9 UE function measures (ie, the Capabilities of Upper Extremity Functioning [CUE] and the Graded and Redefined Assessment of Sensibility, Strength, and Prehension [GRASSP]) received “Recommended” ratings. For wheelchair mobility, The Wheelchair Skills Test (WST) received 1 “Recommended” rating and 4 “Reasonable to Use, but Limited Study in Target Group” ratings, and the other 2 measures in this construct received “Not Recommended” ratings. The SCITF also showed a relative lack of “Recommended” or “Highly Recommended” OMs for people with acute SCI. The acute SCI category had a total of 6 “Highly Recommended” OMs and 7 “Recommended” OMs in comparison with the chronic SCI category, which had a total of 6 “Highly Recommended” OMs and 19 “Recommended” OMs. The SCITF found a strong set of OMs for gait, activities of daily living (ADLs), and strength. The following constructs had multiple measures that could be recommended or highly recommended across at least 3 out of 5 categories: 5 of 8 gait OMs, 2 of 4 ADL OMs, and 3 of 3 strength OMs. Eight of 16 participation measures received a “Recommended” rating, and 1 of 16 participation measures received a “Highly Recommended” rating. Each OM with the ICF domains and the final ratings across all 8 recommendation categories are listed in the eTable.
Dissemination of the SCITF's recommendations was initiated through live presentation of results at the 2013 CSM in San Diego. Further dissemination of these results is ongoing through online resources and presentations. The EDGE forms and summaries of final recommendations were posted on the Neurology Section's website, and these pages have subsequently been widely viewed. In its first 6 months (April–September 2013), the SCI EDGE webpage received an average of 537 views per month, for a total of 4,296 views during this time.
The SCITF recommendations and updates to RMD summaries were provided to the RMD in November and December of 2012. Unfortunately, it is not possible to determine how often SCITF reviews were reviewed on the RMD website because several of the measures reviewed for SCI (eg, BBS) also are used across different conditions. However, the SCI-specific measures on RMD were all created or reviewed by the SCITF. The SCITF examined RMD page views for the 6 highest-rated SCI-specific measures and noted a steady increase from 2013 to 2014. These measures received a rating of “Recommended” or “Highly Recommended” in at least 3 of 5 categories: (1) CUE, (2) GRASSP, (3) International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI), (4) Walking Index for Spinal Cord Injury (WISCI), (5) Spinal Cord Independence Measure (SCIM), and (6) Spinal Cord Injury Functional Ambulation Inventory (SCI-FAI). The RMD webpages for these 6 OMs received a total of 922 unique page views in January 2013, increasing to a total of 1,121 unique page views in September 2013 and 1,449 unique page views in September 2014. In addition, the SCITF added 32 new measures to the RMD. One such measure is the CUE, which received 59 unique page views in January 2013, increasing to 103 unique page views in September 2014. These factors combined suggest that the RMD is an effective dissemination tool for the SCITF.
Discussion
The documents created by the SCITF provide a central resource for clinicians, researchers, and educators to find user-friendly, comprehensive information about OMs in people with SCI. By providing recommendations for which OMs to use, as well as supporting evidence that has been summarized from the literature, barriers such as lack of time, knowledge, and resources3,4 are reduced. Effective dissemination of this information is critical to closing the gap between current practice and best practice in this area.
The collaboration between the SCITF and the RMD resulted in increased accessibility and awareness of this information to a large and widespread audience. Adding the SCITF's results to the RMD website resulted in more people accessing this information than were accessing the Neurology Section website alone. In addition, the quality, quantity, and ease of use of information in the RMD was improved through: (1) 32 new measure summaries added to the database via the SCITF, (2) peer review of existing summaries by the SCITF, and (3) the addition of easily identifiable recommendations and ratings for each OM reviewed. Publishing the results on both the RMD website and the Neurology Section website has been mutually beneficial for the Neurology Section, the RMD, and the end-users of this information.
Upon synthesis of the SCITF work, a number of themes emerged. There were constructs that the SCITF felt were priorities for measurement in SCI, but that did not have any OMs receiving “Recommended” or “Highly Recommended” ratings across all categories. In the Body Structure and Function domain, these constructs included muscle tone and cardiovascular function. In the Activity domain, these constructs included balance, UE function, and wheelchair skills. Despite the fact that these constructs are important in the SCI population,12 they had limited data that would support stronger recommendations.
Clinically, it is often helpful to gain information about muscle tone and how it affects the individual and rehabilitation. Given the overall lack of reliability and validity of data on measures related to tone, including spasticity and spasms, in the SCI population, researchers should consider the use of quantitative methods of measurement in the laboratory, as should clinicians if equipment and time allow. In the absence of “Highly Recommended” or “Recommended” measures, as in the area of muscle tone, clinicians can still select a measure based on information that the SCITF has compiled. Measures receiving a rating of “Not Recommended” (score of 1) can easily be eliminated. For selection of OMs that received a score of 2 related to muscle tone in patients with SCI, the specific attributes of each measure in this area should be compared with patient needs and factored into clinical decision making. The SCITF documents provide short summaries and benefits of each OM. For example, the Penn Spasm Frequency Scale focuses on the patient's point of view, the Modified Ashworth Scale may be used to measure spasticity, and the Spinal Cord Assessment Tool for Spastic Reflexes may be used to measure multijoint spasms.
Individuals with SCI are at an increased risk for cardiovascular disease and have increased levels of inactivity, which can be addressed through exercise.30 The SCITF reviewed 2 measures classified under the construct of cardiovascular function or aerobic capacity: the Six-Minute Arm Test (6-MAT) and the Physical Activity Recall Assessment for People With Spinal Cord Injury (PARA-SCI). Although the 6-MAT lacked data on reliability and validity, it was recommended as reasonable to use as a potential option to test cardiovascular fitness when more sophisticated equipment is unavailable. This measure is a good example of how clinical decision making enters into the use of the SCITF recommendations. A score of 2 on the SCI EDGE recommendations does not mean that the OM should automatically be dismissed. Instead, the clinician must decide which measure would be the best available option in the absence of measures with higher ratings. In this case, the 6-MAT is the best available option for an OM of cardiovascular function, but clinicians should proceed with caution as they interpret the scores. Limitations of the PARA-SCI included lack of validity of the measure in its entirety and the inability of the measure to differentiate among individuals with SCI who have varying levels of physical activity.31 In this situation, the comments on the SCI EDGE documents and information in the RMD summaries become important in OM selection. The SCITF process again revealed a void in an area of measurement for individuals with SCI and the importance of clinical decision making when selecting an OM.
Impaired balance is a significant contributing factor to decreased mobility following SCI.32 Falls occur frequently in individuals with motor incomplete SCI.33 Therefore, balance is an important construct for physical therapists to measure in this population. There were few OMs for balance that had sufficient psychometrics available in the SCI population to allow for a “Recommended” or “Highly Recommended” rating. The BBS is one measure that has been studied in this population to measure balance and received multiple “Recommended” ratings. However, it has been found to have a ceiling effect in individuals with AIS D injuries.34 These individuals continue to be impaired in function, and it would be helpful to have a psychometrically sound tool to help capture these impairments and show change in this higher-functioning, yet still impaired, group. Another limitation of the BBS is that it does not capture balance during gait-related tasks. The Dynamic Gait Index, and the Functional Gait Assessment have been validated in related neurological populations, but not SCI.35,36 The Spinal Cord Injury Functional Ambulation Profile (SCI-FAP) is an SCI-specific measure that incorporates balance and gait related tasks that received a “Recommended” rating in 2 categories; however, only the area of chronic SCI has data available.37 The High Level Mobility Assessment Tool assesses more complex skills requiring balance and postural control that would be applicable to this population, but has not been studied in SCI.38
In addition to these limitations for high-level balance measurement, the SCITF process revealed limitations in measurement of sitting balance. The Modified Functional Reach Test was the only measure of sitting balance and received rating of “Reasonable to Use, but Limited Study in Target Group” (score of 2). Overall, the SCI EDGE process revealed a gap in the area of OMs for the measurement of balance in SCI.
Upper extremity measures specific to SCI are another area of weakness that emerged. Recovery of arm and hand function is a priority in individuals with tetraplegia.39,40 As more contemporary approaches for rehabilitation of the arm and hand in SCI emerge, the need for sound measures becomes even more essential. The GRASSP and CUE are currently 2 options that clinicians and researchers should consider. There are other UE measures that may be useful in the SCI population, but SCI-specific evidence is lacking, and the SCITF was unable to recommend those measures. For example, despite the use of the Action Research Arm Test (ARAT) reported in the SCI intervention research literature, the SCITF found no studies investigating its psychometric properties in people with SCI. Therefore, this measure could not receive a score higher than 2, despite its widely accepted use in the stroke population.10 It would be beneficial for future research to focus on measures such as the ARAT to ensure that clinicians and researchers can perform valid and reliable assessments of UE functioning in individuals with tetraplegia.
Gaining independence with wheelchair mobility and progressing to more advanced wheelchair skills are important for many individuals with SCI.41,42 Although the WST received a “Recommended” rating in one category, indicating it is the best choice of available measures, it still lacks the data required to support a stronger recommendation. This construct needs more validated OMs for people with SCI.
The SCITF also found fewer OMs that could be recommended for people with acute SCI (0–3 months postinjury). The SCITF found that this deficiency was primarily due to lack of research in these measures in acute SCI. In addition, there were 2 constructs with recommended OMs for chronic SCI that had none in the acute SCI category: quality of life and UE function. Quality of life may be difficult to assess in people with acute SCI who are still hospitalized.22 However, many people with SCI are discharged to the community while still in the acute phase of their injuries,43 and it is important that quality of life be addressed in this population.22 Without a recommended OM for this area, the ability to measure, understand, and improve quality of life in the acute phase after SCI is limited. Upper extremity function is another critical area for measurement in any stage after a cervical SCI, including the acute stage. Although there were 2 measures that could be recommended in the chronic SCI category, there were none in the acute SCI category. These gaps represent 2 critical areas of measurement that need further research and development in order to advance SCI rehabilitation.
There also were constructs that were well represented by the list of the SCITF's “Recommended” and “Highly Recommended” measures. In the Body Structure and Function domain of the ICF, strength/motor function had 3 “Recommended” and “Highly Recommended” measures: the International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI), handheld myometry, and manual muscle tests. The ISNCSCI and handheld myometry were a given a rating of “Highly Recommended” and, therefore, by definition of the rating scale, have excellent reliability, validity, and data to guide interpretation. Strength is an important contributor to walking ability for people with SCI,44 and strength and sensation as measured by the ISNCSCI are useful in determining prognosis for the recovery of walking after SCI.45 Therefore, having excellent measures in this area that include data to guide interpretation are particularly important.
In the Activity domain, ADLs and gait had multiple “Recommended” and “Highly Recommended” measures. The Functional Independence Measure and the SCIM measure ADLs, have a large set of psychometric data available, and received a rating of “Recommended” in all categories. Gait was particularly well represented, with 5 measures that included SCI-specific reliability and validity and data to guide interpretation: 10-Meter Walk Test, Six-Minute Walk Test, SCI-FAI, Timed “Up & Go” Test (TUG), and WISCI. The breadth of these measures allows various aspects of walking to be tested as well: walking speed (10-Meter Walk Test, Six-Minute Walk Test, TUG, and SCI-FAI), walking endurance (Six-Minute Walk Test, SCI-FAI), equipment used with walking (WISCI, SCI-FAI), independence with walking (WISCI), and gait deviations (SCI-FAI). In cases where there are multiple “Recommended” and “Highly Recommended” OMs for the same construct, the SCITF documents can assist in determining which OMs to use based on ratings and specific attributes of these constructs that they want to measure.
In the Participation domain, all measures that achieved a “Recommended” or “Highly Recommended” rating in at least 3 of the 5 categories were patient-reported outcomes measuring domains of quality of life, community function, health and wellness, and environmental factors. These measures had extensive psychometric data available in the chronic SCI population. In the acute SCI population, however, only one of these measures (the Needs Assessment Checklist [NAC]) could be recommended based on the available research literature. Only 2 of these measures (NAC, Sickness Impact Profile) could be recommended for use in the subacute SCI population. Therefore, many of the Participation-level OMs are most appropriate to be used in the chronic SCI population. In addition, limited psychometric data were available for interpreting change in these measures. Therefore, although the number of OMs available with a “Recommended” rating is relatively large, there are still limitations in their clinical usefulness. Based on available research, these measures are able to accurately measure the intended construct in people with chronic SCI. However, when using them to measure improvement or decline, it is unclear how much change is required to represent true or meaningful change and whether these measures capture the types of changes that our patients typically make in rehabilitation. The collective experience of SCITF members was that these measures are not widely used in clinical practice, and these limitations may provide at least part of the explanation for why. Another explanation is that clinicians are less familiar with these measures or how to implement them. The EDGE process has aimed to reduce the knowledge gap related to Participation measures by providing clinicians with information about measures to use with their patients. Although more research is needed to better guide how to interpret change in these measures, the Participation level of function is still an important area to measure in SCI.
The SCITF's recommendations also were developed to guide researchers in choosing appropriate OMs for studies in the area of SCI rehabilitation. Using a limited set of high-quality OMs for research studies will help to: (1) increase the quality of research results, (2) improve the ability to compare results among studies, and (3) improve translation of research results to the clinic by making it more feasible for clinicians to compare results of interventions they implement with what is reported in the literature. The SCITF created a list of recommended OMs for use in research to improve all of these areas. Recommendations were made based on the psychometric data available for the OM and the strength of other OMs measuring the same construct, with less concern for clinical utility. For instance, the WST was recommended for research despite receiving a score of 2 in 4 out of 5 categories. Although the amount of psychometric data available for the WST was lacking (which limited its rating to a score of 2 in 4 of 5 categories), this was the best available to measure this construct, which made the WST most appropriate to recommend for research.
Limitations
A limitation to this process for consensus is that it does not include a true systematic analysis or meta-analysis review to assign a rating. However, the SCITF did conduct extensive literature reviews of each OM and utilized specific criteria in order to inform group members and support knowledgeable decision making during the modified Delphi process. Additionally, use of the modified Delphi process allowed for consideration of ambiguous results of the literature review in making recommendations (for instance, determining clinical utility of a measure that takes more time to administer or has a financial cost for use).
There are challenges related to ongoing implementation of these recommendations. First, more research on OMs is constantly being generated. The information compiled by the SCITF was current as of 2012. There is currently not a system in place to update the information from all of the EDGE groups. However, the Neurology Section is currently considering plans to implement a system to keep EDGE results updated. Second, there is a need to streamline the results in order to maximize usability. As more EDGE groups for different diagnoses generate more recommendations, the abundance of information may become overwhelming for users. For clinical recommendations, a total of 63 OMs were reviewed, including 25 OMs that were specific to SCI. For entry-level education, the SCITF made an effort to be highly selective in choosing recommended OMs. However, there are still 9 OMs that were recommended for students to learn to administer and an additional 14 OMs for exposure during entry-level education. Although most of these OMs are not specific to SCI and, therefore, can be useful in multiple diagnoses, the number of OMs to be taught in entry-level education is high when taking all of the EDGE groups into account. For clinicians and students managing a varied caseload, navigating through all 6 EDGE group recommendations may be a barrier for translation into clinical practice. Therefore, the development of recommendations for OM use in a general neurologic population may be appropriate in order to facilitate consistent and effective carryover into the clinic. Clinical practice guidelines to address this issue are currently in development through the EDGE Task Force.46
Conclusion
The SCITF reviewed 63 SCI OMs and made recommendations for use in clinical practice using a 4-point scale that was based on strength of psychometric properties and clinical utility. Additional recommendations (yes/no) were made for entry-level education and research. The recommendations provided by the SCITF can enhance clinical practice, research, and delivery of entry-level education by providing an efficient way to obtain information; provide options for OMs that are clinically feasible, psychometrically sound, relevant, and meaningful for individuals with SCI; and help guide intervention. Clinicians can use these recommendations to make sound clinical decisions that are guided by effective measurement to enhance patient care.
Appendix.
Spinal Cord Injury Evaluation Database to Guide Effectiveness (EDGE) Forma
Footnotes
All authors provided concept/idea/project design, data collection and analysis, and consultation (including review of manuscript before submission). Dr Kahn and Dr Tappan provided writing. Dr Kahn provided project management.
Dr Kahn, Dr Tappan, Mr Newman, Dr Romney, Dr Stultz, and Dr Tefertiller are Neurologic Certified Specialists.
The SCITF acknowledges the support of the APTA Neurology Section (Academy of Neurologic Physical Therapy). The SCITF also acknowledges the team at the Rehabilitation Measures Database (Allen Heinemann, PhD, Jennifer Moore, PT, DHS, Jill Smiley, MPH, and Jason Raad, PhD) for providing user data for the Rehabilitation Measures Database and for their overall collaboration with the SCITF.
- Received August 16, 2015.
- Accepted May 14, 2016.
- © 2016 American Physical Therapy Association
References
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