In addition to the amount and intensity of rehabilitation interventions and the number of therapies, the degree of patient participation in physical rehabilitation activities is key. For this reason, adequate information regarding participation is necessary to evaluate patient performance. This article reviews instruments designed to assess participation in physical rehabilitation activities.
Pubmed, CINAHL, PsycInfo, Embase, and Cochrane Library database were searched for publications between January 1976 and July 2012. Secondary searches were also conducted and reference lists scanned for relevant publications.
Fourteen articles reporting on three instruments were found. They differ with regard to their underlying theoretical concepts. Each instrument was tested in medical inpatient rehabilitation settings.
Each instrument appears to be useful for assessing specific aspects of patient participation in rehabilitation activities. More theoretical work is needed to clarify the underlying concepts as these instruments are not yet ready for clinical application.
Rehabilitation is intended to restore optimal functioning for people with injuries or illness. Rehabilitation is a complex and multidisciplinary process (Wade & de Jong, 2000). Benefit to the patient is the key outcome and universal aim (Cameron, 2010). Given the number of variables that can influence both structure and process (Keith, 1997), neither the amount and intensity of interventions delivered nor the extent of therapy attendance is sufficient to fully explain outcomes. There is long-standing research interest in process variables that would better explain or predict rehabilitation outcomes (Lequerica & Kortte, 2010) as well as a growing interest in a clearer understanding of what works in rehabilitation, and why (Keith, 1997; Wade & de Jong, 2000). In this context, patient adherence to rehabilitation interventions has been suggested as an area of consideration (Cameron, 2010). Adherence suggests that the extent to which patients attend rehabilitation activities might help to explain outcomes. Nevertheless, the extent to which patients participate actively in rehabilitation activities would be a crucial determinant of how much an individual gains from rehabilitation activities.
A specific dimension in rehabilitation nursing is translating newly acquired patient knowledge and skills from exercise lessons into complex and socially meaningful situations (Kirkevold, 1997). That is, nurses have access to unique patient care situations which have the potential to involve patient participation. For example, a female patient, aged 74, hospitalized with a first ever hemispheric stroke 10 days previously, is expecting her neighbor for a short visit. As she has never before visited her neighbor in a nightgown and ungroomed, the nurse helps her to transfer to a wheelchair and to straighten her hairstyle. By doing this the nurse will draw on the transfer skills the patient has acquired in physiotherapy lessons and on the self-care skills acquired in occupational therapy lessons. That is, the nurse helps the patient to adopt these skills to achieve a personally meaningful result that lies beyond exercise lessons. Knowledge about a patient's level of participation would help nurses to encourage patients and to foster their efforts in contributing to and benefitting from the rehabilitation process. Again, this information would be useful for all members of the multidisciplinary team as it would enable them to have a better gage of the effectiveness of their planning and their efforts to assist the patient in making the most of the rehabilitation therapies offered.
For this reason, specific instruments are needed to determine the degree of patient participation in rehabilitation activities. Patient participation has been discussed (Cahill, 1998; Pritchard, 1981) and advocated (Brownlea, 1987; Haidet, Kroll & Sharf, 2006; Mansell, Poses, Kazis & Duefield, 2000; Sahlsten, Larsson, Sjöström, Lindencrona & Plos, 2007) in direct patient care over the years. The World Health Organization's International Classification of Functioning, Disability and Health (ICF) (2001) views participation as a core concept (Heinemann, 2010), defined as “involvement in a life situation.” In contrast to the broad domains depicted above, our review focuses solely on the patient's active part in the process of physical rehabilitation activities. The purpose of this integrative review is to present an overview of instruments designed to assess the degree of patient participation in physical rehabilitation activities, their underlying theoretical constructs, psychometric properties, and their use in clinical practice. Psychometric properties indicate to what degree an instrument can be trusted to measure the concept in question in a valid and reliable way (Cook & Beckman, 2006; DeVon et al., 2007; Polit & Beck, 2012).
This article will address the following research questions:
Which instruments are reported in the literature as quantifying the extent of patient participation in physical rehabilitation activities?
What are the psychometric qualities of these instruments?
To what extent have the instruments been used in further research or in clinical practice?
An integrative literature search was performed in several electronic databases: MEDLINE (Pubmed), CINAHL, PsycInfo, and EMBASE, and included articles published between January 1976 and July 2012. January 1976 was chosen as a starting point since publications on patient participation in a broad sense had started being published in the early 1980s. The following keywords were used for MEDLINE: Patient Participation AND Rehabilitation AND (Instrument OR Measurement OR Treatment Outcome) and were adapted to the specific thesaurus of each database: (CINAHL: Consumer Participation AND Rehabilitation AND [Research Instruments OR Treatment Outcomes]; PsycInfo: Client Participation AND Rehabilitation AND [Measurement OR Treatment Outcomes]; EMBASE: Patient Participation AND Rehabilitation AND [Instrument OR Measurement OR Outcome Assessment]; Cochrane Library: Patient Participation AND Rehabilitation).
To capture all relevant publications, additional searches were conducted using the authors' names or the instrument titles. Furthermore, reference lists in the retrieved articles were scanned for relevant publications.
Inclusion and exclusion criteria
Articles were included if they:
addressed patient participation in the field of physical rehabilitation activities;
provided information about the development, validation, or application of an instrument designed to assess the degree of patient participation in this field; and
were published in English or German.
Articles were excluded if they:
focused on patient participation in fields different from physical rehabilitation activities (e.g., decision-making or social participation); and
dealt with other domains of health care than physical rehabilitation (e.g., mental rehabilitation, substance abuse, acute hospital care, general practice).
The first two authors, working independently, reviewed the abstracts of all the articles resulting from the search on the predefined criteria. When unclear, articles were deemed eligible for further inspection. From this initial stage, full-text versions were retrieved of all selected articles and again independently assessed for definite inclusion as suggested elsewhere (Reeves, Koppel, Barr, Freeth & Hammick, 2002). The first two authors met at the end of each stage to discuss their findings.
Data abstraction and synthesis
The first two authors reviewed the articles independently and extracted data relating to instrument title and first author, setting and sample characteristics, validity (content/criterion/construct), and reliability (internal consistency/reproducibility). Disagreement was resolved by discussion. Articles reporting on instrument development and initial testing are summarized in Table 1. Articles reporting on instrument application are summarized in a separate table (Table 2).
Table 1. Overview of Instruments Designed to Assess Patient Participation in Physical Rehabilitation Activities
Inclusion criteria: 18+ years; ability to provide informed consent, no previous spinal cord surgery
HRERS applied at week 6 (last visit) by PT (attendance was self-reported weekly)
Academic spine center
65 patients with degenerative lumbar spinal stenosis postsurgery
Age: 58 years (± 15);
Gender: 58% female;
Race: 85% Caucasian
Patient activation correlated with measures of attendance and HRERS scores, Patient activation accounting for 28% of variance in attendance (r =.53; p <.001) and 56% of variance in HRERS scores (r =.75; p <.001).
HRERS applied during inpatient rehabilitation (t not specified) by PT and OT independently
Follow-up at 3 months postdischarge (not for HRERS)
Three acute hospital inpatient rehabilitation units
spinal cord dysfunction (n =82)
stroke (n =23)
amputation (n =16)
hip or knee replacement (n =18)
Age: 18–92 years (54.90 ± 18.72);
Gender: 39.6% female;
Race: 53.2% Caucasian
Inverse relation of avoidance with HRERS scores (r =-.22, p <.010)
Internal consistency for HRERS: Cronbach's α .92
HRERS was used to validate measure of avoidance
For quality assessment, we followed the recommendations of Terwee et al. (2007) regarding criteria for assessing psychometric properties of health status questionnaires. These correspond largely with the items reported on in Table 3, except for our adding of descriptions of the underlying concept, target population, and instrument development. The criteria mainly focus on validity and reliability as both being “basic requirements for research” (DeVon et al., 2007, p. 161). While validity represents the degree to which an instrument measures what it is supposed to measure, reliability refers to the degree of consistency and accuracy of measurement (Polit & Beck, 2012, p. 175). Content validity characterizes the theoretical fit between the items of a particular instrument and current knowledge in either scientific literature or in experts. Construct validity represents the degree to which an instrument measures a given abstract concept or construct. Criterion-related validity reflects the consistency of measurement results between the instrument under investigation and a “gold standard,” i.e., an established instrument measuring the same concept (Houser & Kotzer, 2008). When examining reliability we looked at internal consistency and reproducibility. Internal consistency is the degree to which all items are correlated with each other, i.e., measuring the same construct. It is referred to as Cronbach's alpha. We considered a Cronbach's alpha between 0.70 and 0.95 as positive rating for internal consistency (DeVon et al., 2007; Terwee et al., 2007). Reproducibility refers to either extent to which the results from repeated measurement are close to each other or to which patients can be distinguished from each other based on measurement results. This is expressed as intraclass correlation coefficient (ICC). We considered an ICC of at least .70 as a positive rating (Terwee et al., 2007).
Table 3. Quality Assessment of Instrument Properties
Rating: + = positive; 0 = intermediate; - = poor; ? = no information available.
Description of underlying concept
Description of target population
Description of instrument development
We evaluated articles that reported on instrument development and initial testing. The criteria, as operationalized by Terwee et al. (2007, p. 39), assisted us in the process of judging each quality aspect as either sufficiently covered or not. In assessing quality, we did not provide an overall score for two reasons. First, a sum score would give equal importance to all psychometric properties. With respect to instrument development, information about content validity is of greater importance (Terwee et al., 2007). Second, quality assessment depends on the availability of information and on the quality of reporting (Farquhar & Vail, 2006). Newly developed instruments are probably neither fully validated nor reported on in studies where multiple outcomes are assessed (Terwee et al., 2007).
The keyword search in the electronic database yielded 2567 articles (Figure 1). After reviewing the abstracts, the vast majority were excluded. A predominant reason was the focus on patient participation in fields other than physical rehabilitation activities (e.g., decision-making, goal setting, and social participation). Another reason was a focus on other domains in health care (e.g., substance abuse). Ten articles passed the criteria for inclusion.
Based on these findings, two additional full-text database searches were conducted. Here, the first authors' names (202 citations) or the instruments' titles (398 citations) were used. After a review of abstracts, 14 more articles were added (eight from search for authors' names; six from search for instruments' titles), resulting in a total of 24 articles. Ten were excluded after retrieval of the full text, for the following reasons:
Four studies assessed other than physical activities in rehabilitation (Ashe, Eng, Miller & Soon, 2007; Battersby et al., 2009; Kayes et al., 2010; Post et al., 2012).
Three articles contained incomplete (Lenze et al., 2004a) or no data (Lequerica, 2005; Lequerica, Donnell & Tate, 2009).
The selection procedure is depicted in Figure 1. The selected 14 articles (Kortte, Falk, Castillo, Johanson-Greene & Wegener, 2007; Kortte, Veiel, Batten & Wegener, 2009; Lenze et al., 2009, 2004b,2004c; Lequerica et al., 2007, 2006; Munin, Begley, Skidmore & Lenze, 2006; Munin et al., 2005; Paolucci et al., 2012; Skidmore et al., 2011, 2010; Skolasky, Mackenzie, Wegener & Riley, 2008; Talkowski, Lenze, Munin, Harrison & Brach, 2009) are presented in the following section. It is organized in chronological sequence according to the development, validation, and clinical application of the three instruments that assess the degree of patient participation in physical rehabilitation activities (Table 1).
Three different instruments are available to measure patient participation in physical rehabilitation: the Pittsburgh Rehabilitation Participation Scale (PRPS) (Lenze et al., 2004b), the Rehabilitation Therapy Engagement Scale (RTES) (Lequerica et al., 2006), and the Hopkins Rehabilitation Engagement Rating Scale (HRERS) (Kortte et al., 2007).
The quality scores of these instruments are summarized in Table 3. It shows that quality criteria are most complete in RTES and HRERS, but their responsiveness to change and content validity are not clear. For all instruments the target population, reproducibility, and criterion-related validity are available.
Pittsburgh Rehabilitation Participation Scale
The PRPS assesses patients' participating behavior in rehabilitation activities at the end of each occupational and physical therapy session (Lenze et al., 2004b). It was developed based on observations made by occupational and physical therapists and by the authors. No further definition of the term participation is offered. Initially, Lenze et al. (2004b) aimed to operationalize “motivation for rehabilitation,” but chose participation as a surrogate measure instead. The PRPS is a single item instrument appraising the individual extent of participation on a 6-point Likert-type scale. The rating points consider therapy attendance, patients' stamina and effort in therapy, as well as interest in exercises and future therapy. These different aspects are not scored simultaneously but are added stepwise. While the lowest score refers to therapy attendance only, the highest score considers all aspects.
The PRPS was tested with 242 inpatients at two units of a university-associated rehabilitation facility. Admission criteria for rehabilitation either were neurological or orthopedic disorders or debility. Patients with primary diagnosis of traumatic brain injury or spinal cord injury were excluded. Occupational (OT) and physical therapists (PT) scored patients after each session. Ratings in both groups showed high interrater reliability (ICC .91 for OT and .96 for PT). PRPS scores correlated highly within motor FIM (p < .001) and length of stay (p <.01), hence supporting predictive validity (Table 1).
Eight other articles report on the PRPS (Lenze et al., 2009, 2004c; Munin et al., 2006, 2005; Paolucci et al., 2012; Skidmore et al., 2011, 2010; Talkowski et al., 2009) (Table 2). The instrument was used predominantly in hip fracture populations (Lenze et al., 2009; Munin et al., 2006, 2005; Talkowski et al., 2009). From the information given, it is difficult to judge whether independent samples or subsamples of major studies were assessed. One study examined a stroke population (n =44) based on a distinct secondary analysis (Skidmore et al., 2010). Another study reports on a single stroke patient (Skidmore et al., 2011). The PRPS was used during inpatient rehabilitation solely (Table 2).
Rehabilitation Therapy Engagement Scale
Lequerica et al. (2006) developed the RTES based on rehabilitation research literature as a response to quality assurance issues. Its purpose is to document a patient's level of engagement in rehabilitation therapy to identify problem areas that could be targeted for intervention. Engagement is defined as the deliberate effort and commitment to working toward the goals of rehabilitation therapy (Lequerica et al., 2006). The instrument consists of 15 items assessing “attitudes, perceptions, and expectations that influence engagement and performance” (Lequerica et al., 2007; p. 180). It rates on a 4-point Likert scale, although its wording is not reported. The authors associate a high level of engagement with increased participation in rehabilitation activities (Lequerica & Kortte, 2010).
The RTES was tested in a sample of 75 inpatients admitted to the brain injury unit of an acute rehabilitation facility. Patients suffered from acquired brain injury or an acute neurophysiological event. Occupational and physical therapists scored the individual patient independently during the first week after admission. The internal consistency was high (Cronbach's alpha 0.97 for PT and 0.99 for OT). The interrater reliability was satisfactory (ICC .71). Rasch analysis resulted in a relatively unidimensional construct in both ratings. RTES scores accounted for variance in injury severity and progress in cognitive (p =.016) and motor FIM (p =.009) thus supporting predictive validity (Table 1).
The RTES was applied in one more study with brain injury patients (n =69) (Lequerica et al., 2007) (Table 2).
Hopkins Rehabilitation Engagement Rating Scale
The HRERS, developed by Kortte et al. (2007), is based on a coauthor's unpublished rehabilitation participation measure. The authors define participation as the degree or extent to which a subject partakes in rehabilitation activities. They extend the construct of participation beyond therapy attendance and motivation into engagement. This term is defined “as an interest in, and an intentional effort to, work toward the rehabilitation goals” (Kortte et al., 2007, p. 878). The instrument consists of five items within the single domain of “engagement” capturing therapy attendance, attitude toward rehabilitation, and participating behavior. Therapists rate their observations on a 6-point Likert scale.
The HRERS was tested with 206 inpatients in three local hospitals providing inpatient rehabilitation programs. Patients were included if it was their first rehabilitation admission and if there was no more than a mild cognitive impairment. They had a diagnosis of either spinal cord injury or stroke, amputation, hip or knee replacement. Patients' engagement was rated on the HRERS throughout the inpatient stay by an occupational and a physical therapist independently. The internal consistency was high (Cronbach's alpha=0.92 for PT and 0.91 for OT). Interrater reliability was satisfactory. Construct validity is documented by factor analysis (one single factor) and further supported by correlation with key clinical variables. Differences between HRERS scores and FIM scores (p =.04) and number of total absences from therapy sessions (p <.001) demonstrate criterion-related validity (Kortte et al., 2007).
The HRERS was applied during inpatient rehabilitation to spinal cord populations (n =252) mainly after primary or secondary surgery. Other populations consisted of poststroke patients (n =58), patients with hip or knee replacement (n =58), or amputation (n =41) (Table 1, 2).
This integrative review identified three instruments designed to measure patient participation in physical rehabilitation activities. All demonstrate a somewhat fair degree of psychometric properties and show clinical usefulness but exhibit variations in underlying concepts. This appears to be the major shortcoming. In developing the instruments, the authors aimed at quantifying specific behaviors that represent the patient's contribution to the rehabilitation process. The authors label this behavior either “participation” (Lenze et al., 2004b) or “engagement” (Kortte et al., 2007; Lequerica et al., 2006). This requires patient involvement (Brownlea, 1987) which is acknowledged implicitly (Lenze et al., 2004b) and explicitly (Kortte et al., 2007; Lequerica et al., 2006) by all authors. In principle, motivation is considered of major importance. Lenze et al. (2004b) employ participation as a surrogate measure of motivation, while Lequerica et al. (2006) and Kortte et al. (2007) view motivation as an indispensable prerequisite for patient participation. They consider patient engagement a significant means to contribute to the rehabilitation process.
In a subsequent publication the latter authors describe participation as a “separate but related construct” (Lequerica & Kortte, 2010, p. 416) of engagement. Here, they constitute the term therapeutic engagement and offer a theoretical model that depicts the constitution and flow of patient engagement. It incorporates communication with professionals in the rehabilitation process and pinpoints areas for interventions (Lequerica & Kortte, 2010). The discussion of participation and engagement could be looked at alternatively: If patient participation reflects the observable behavior, it might be easily assessed as Lenze et al. (2004b) suggest. If patient engagement reflects motivation put into action, engagement would precede participation, thereby offering points for intervention to increase participation.
Patient participation appears to be a construct with multiple facets that cannot be simply summarized as a single item. This is shown in the way the PRPS has operationalized participation (Lenze et al., 2004b). The patient's behavior is rated by stepwise augmenting factors that do not necessarily represent a linear increase. This would impede the identification of starting points for targeted interventions to support individual participation. On the other hand, participation can change over time. Neither RTES (Lequerica et al., 2006) nor HRERS (Kortte et al., 2007) were designed or tested to track changes over the course of rehabilitation, which would be necessary to evaluate improvement in participation. However, the need to track participation has been acknowledged by Lequerica et al. (2006).
Although all three instruments demonstrate a fair degree of usefulness, more theoretical work is needed to further clarify the conceptual and operational definitions. Lequerica's and Korttes's recent publication (2010) could indicate that this is on its way. It must be noted that all three instruments were developed, tested, and applied by two of the professions on the otherwise multidisciplinary rehabilitation team, i.e., physiotherapists or occupational therapists. This does not bring into question the necessity for nurses to be informed of an individual patient's level of participating in physical rehabilitation activities during physiotherapy or occupational therapy sessions. Nurses do not primarily deliver those therapy sessions, nevertheless, they frequently monitor a patients' response to allied health interventions (Pryor & Smith, 2002). However, the instruments' potential might be far too limited for application in nursing practice, since the instruments' wording does not or only rudimentarily reflects complex nursing care situations as described above. Here, the question arises as to whether physical rehabilitation activities take place in exercise sessions exclusively or whether they also occur outside these parameters. To assess the phenomenon in question within the context of complex nursing care situations, the present instruments must be either advanced or instruments should be specifically developed. Still, an instrument able to measure patient participation in physical rehabilitation activities across professional boundaries and in various patient situations would facilitate communication within the multiprofessional team when assessing the progress of a patient in rehabilitation. A “shared instrument” would be in line with the multidisciplinary team approach as it is advocated and largely implemented today (Prvu Bettger & Stineman, 2007; Strasser et al., 2005). Since nursing is a major component of this team, nursing's contributions to such an instrument are indispensable.
Two limitations apply with respect to the completeness of our findings. The exclusion of studies in languages other than English and German might result in missing articles. As far as Romanic languages are concerned, the titles screened did not imply that any relevant instrument had been missed. The keywords selected did not produce all articles included in this review. Only information gained from the first results (i.e., first authors' names and instruments' titles), used in a subsequent full-text search, resulted in the final number of studies. Using Pubmed's ability to list “related articles,” we counterchecked for a broad range of publications, which did not produce additional studies for inclusion.
In conclusion, the relevance of assessing patient participation in the field of physical rehabilitation activities has gained attention. As for the instruments developed and tested so far, current evidence does not yet encourage application in practice.
Conflict of interest statement
The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the article.
Key Practice Points
While all efforts in rehabilitation have the aim of restoring patients' functions, patients' active participation in rehabilitation therapies offers crucial support to those efforts.
The ability to assess a patient's level of participation in physical rehabilitation activities would provide nurses with valuable information to support and encourage patient participation in complex care situations.
Three instruments emerged from a comprehensive search of electronic data banks, with variations in their conceptualization of patient participaction in physical rehabilitation activities.
All instruments designed and tested up to this point are not yet ready for clinical application.
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