The use of patient experience feedback in rehabilitation quality improvement and codesign activities: Scoping review of the literature.

OBJECTIVE: To characterize the literature, reported enablers, and gaps on the use of patient experience feedback for person-centered rehabilitation quality improvement and codesign activities. DESIGN: Scoping Review. DATA SOURCES: Scientific databases (PubMed, CINAHL, Rehabdata, Scopus, Web of Science, ProQuest), website searches (e.g. Beryl Institute), snowballing, and key-informant recommendations. METHODS: Two independent reviewers performed title and abstract screenings and full-text reviews. Eligibility focused on English-language, peer-reviewed (all time) and gray literature (last five years) that used patient experience feedback in rehabilitation improvement activities. The aims, settings, methods, findings, implications, and reported limitations were extracted, followed by content analyses identifying reported enablers and gaps. RESULTS: Among the 901 unique references and 52 full texts reviewed, ten were included: four used patient experience surveys for improving patient experiences; six used codesign methodologies to engage patient feedback in service improvement activities. Implementation enablers included securing managerial support, having a structured methodology and facilitator, using efficient processes, engaging staff experiences, and using appreciative inquiry. Reported study gaps included limited follow-up, low sample sizes, analytical limitations, lack of reported limitations, or narrow range of perspectives (e.g. not from people with severe impairments). CONCLUSION: Few examples of the use of patient experience feedback in quality improvement or codesign activities were found in the rehabilitation literature. Patient experience improvement activities relied exclusively on retrospective survey data, which were not combined with often more actionable forms (e.g. qualitative, real time) of patient experience feedback. Further research might consider design of activities that collect and use patient experience feedback for rehabilitation service improvements.

Psychological factors outmatched morphological markers in predicting limitations in activities of daily living and participation in patients with lumbar stenosis.

BACKGROUND: Recent demographic changes have led to a large population of older adults, many of whom experience degenerative disc diseases. Degenerative lumbar spinal stenosis (DLSS) is associated with considerable discomfort and limitations in activities of daily living (ADL). Symptomatic DLSS is one of the most frequent indications for spinal surgery. The aim of this study was to identify sociodemographic variables, morphological markers, depression as well as fear of movement that predict ADL performance and participation in social life in patients with DLSS. METHODS: Sixty-seven patients with DLSS (mean age 62.5 years [11.7], 50.7% females) participated in the study. Predictor variables were age, gender, duration of disease, three morphological markers (severity of the lumbar stenosis, the number of affected segments and presence of spondylolisthesis) as well as self-reported depression and fear of movement. Dependent variables were pain interference with the performance of ADLs, ADLs and participation in social life. Correlations between predictor and dependent variables were calculated before stepwise, linear regression analyses. Only significant correlations were included in the linear regression analyses. RESULTS: Variance explained by the predictor variables ranged between 12% (R2 = .12; pain interference-physical) and 40% (R2 = .40; ADL requiring lower extremity functioning; participation). Depression and fear of movement were the most powerful predictors for all dependent variables. Among the morphological markers only stenosis severity contributed to the prediction of ADLs requiring lower extremity functioning. CONCLUSION: Depression and fear of movement were more important predictors of the execution of ADLs and participation in social life compared to morphological markers. Elevated depressive symptoms and fear of movement might indicate limited adaptation and coping regarding the disease and its consequences. Early monitoring of these predictors should therefore be conducted in every spine centre. Future studies should investigate whether psychological screening or a preoperative psychological consultation helps to avoid operations and enables better patient outcomes.

Preferences for physical activity: a conjoint analysis involving people with chronic knee pain.

OBJECTIVE: To investigate individual preferences for physical activity (PA) attributes in adults with chronic knee pain, to identify clusters of individuals with similar preferences, and to identify whether individuals in these clusters differ by their demographic and health characteristics. DESIGN: An adaptive conjoint analysis (ACA) was conducted using the Potentially All Pairwise RanKings of all possible Alternatives (PAPRIKA) method to determine preference weights representing the relative importance of six PA attributes. Cluster analysis was performed to identify clusters of participants with similar weights. Chi-square and ANOVA were used to assess differences in individual characteristics by cluster. Multinomial logistic regression was used to assess associations between individual characteristics and cluster assignment. RESULTS: The study sample included 146 participants; mean age 65, 72% female, 47% white, non-Hispanic. The six attributes (mean weights in parentheses) are: health benefit (0.26), enjoyment (0.24), convenience (0.16), financial cost (0.13), effort (0.11) and time cost (0.10). Three clusters were identified: Cluster 1 (n = 33): for whom enjoyment (0.35) is twice as important as health benefit; Cluster 2 (n = 63): for whom health benefit (0.38) is most important; and Cluster 3 (n = 50): for whom cost (0.18), effort (0.18), health benefit (0.17) and enjoyment (0.18) are equally important. Cluster 1 was healthiest, Cluster 2 most self-efficacious, and Cluster 3 was in poorest health. CONCLUSIONS: Patients with chronic knee pain have preferences for PA that can be distinguished effectively using ACA methods. Adults with chronic knee pain, clustered by PA preferences, share distinguishing characteristics. Understanding preferences may help clinicians and researchers to better tailor PA interventions.

Validation of the NIH Toolbox in Individuals with Neurologic Disorders.

OBJECTIVE: Individuals with spinal cord injury (SCI), traumatic brain injury (TBI), and stroke experience a variety of neurologically related deficits across multiple domains of function. The NIH Toolbox for the Assessment of Neurological and Behavioral Function (NIHTB) examines motor, sensation, cognition, and emotional functioning. The purpose of this paper is to establish the validity of the NIHTB in individuals with neurologic conditions. METHODS: Community-dwelling individuals with SCI (n = 209), TBI (n = 184), or stroke (n = 211) completed the NIHTB. Relative risks for impaired performance were examined relative to a matched control groups. RESULTS: The largest group differences were observed on the Motor domain and for the Fluid Cognition measures. All groups were at increased risk for motor impairment relative to normative standards and matched controls. Fluid cognitive abilities varied across groups such that individuals with stroke and TBI performed more poorly than individuals with SCI; increased relative risks for impaired fluid cognition were seen for individuals in the stroke and TBI groups, but not for those in the SCI group. All three neurologic groups performed normally on most measures in the Sensation Battery, although TBI participants evidenced increased risk for impaired odor identification and the stroke group showed more vision difficulties. On the Emotion Battery, participants in all three groups showed comparably poor psychological well-being, social satisfaction, and self-efficacy, whereas the TBI group also evidenced slightly increased negative affect. CONCLUSIONS: Data provide support for the validity of the NIHTB in individuals with neurologic conditions.

Validation and clinical utility of the executive function performance test in persons with traumatic brain injury.

This study examined the relationships between the Executive Function Performance Test (EFPT), the NIH Toolbox Cognitive Function tests, and neuropsychological executive function measures in 182 persons with traumatic brain injury (TBI) and 46 controls to evaluate construct, discriminant, and predictive validity. Construct validity: There were moderate correlations between the EFPT and the NIH Toolbox Crystallized (r = -.479), Fluid Tests (r = -.420), and Total Composite Scores (r = -.496). Discriminant validity: Significant differences were found in the EFPT total and sequence scores across control, complicated mild/moderate, and severe TBI groups. We found differences in the organisation score between control and severe, and between mild and severe TBI groups. Both TBI groups had significantly lower scores in safety and judgement than controls. Compared to the controls, the severe TBI group demonstrated significantly lower performance on all instrumental activities of daily living (IADL) tasks. Compared to the mild TBI group, the controls performed better on the medication task, the severe TBI group performed worse in the cooking and telephone tasks. Predictive validity: The EFPT predicted the self-perception of independence measured by the TBI-QOL (beta = -0.49, p < .001) for the severe TBI group. Overall, these data support the validity of the EFPT for use in individuals with TBI.

Using Rasch motor FIM individual growth curves to inform clinical decisions for persons with paraplegia.

STUDY DESIGN: A longitudinal retrospective study. OBJECTIVE: To better understand individual-level temporal change in functional status for participants with paraplegia in the National Spinal Cord Injury Database (NSCID), as measured by Rasch Transformed Motor Functional Indepedence Measure (FIM) scores. SETTING: Multicenter/Multistate longitudinal study across the United States. METHODS: Non-linear random effects modeling, that is, individual growth curve analysis of retrospective data obtained from the National Institute on Disability and Rehabilitation Research (NIDRR) NSCID. RESULTS: We generated non-linear individual level trajectories of recovery for Rasch Transformed Motor FIM scores that rise rapidly from inpatient rehabilitation admission to a plateau. Trajectories are based on relationships between growth parameters and patient and injury factors: race, gender, level of education at admission, age at injury, neurological level at discharge, American Spinal Injury Association Impairment Scale (AIS) at discharge, days from injury to first system inpatient rehabilitation admission, rehabilitation length of stay, marital status and etiology. On the basis of study results, an interactive tool was developed to represent individual level longitudinal outcomes as trajectories based upon an individual's given baseline characteristics, that is, information supplied by the covariates and provides a robust description of temporal change for those with paraplegia within the NSCID. CONCLUSIONS: This methodology allows researchers and clinicians to generate and better understand patient-specific trajectories through the use of an automated interactive tool where a nearly countless number of longitudinal paths of recovery can be explored. Projected trajectories holds promise in facilitating planning for inpatient and outpatient services, which could positively impact long term outcomes.

State of the Science in Spinal Cord Injury Rehabilitation 2011: informing a new research agenda.

STUDY DESIGN: This manuscript summarizes recommendations from the State of the Science Conference in Spinal Cord Injury Rehabilitation 2011. OBJECTIVES: To develop an agenda for spinal cord injury (SCI) rehabilitation research in the next decade. SETTING: Participants scheduled planning meetings and then gathered at the 2011 joint meeting of the American Spinal Injury Association and International Spinal Cord Society in Washington DC. METHODS: Recommendations were made by an international, multidisciplinary team that met in large plenary sessions and breakout groups during the meeting. RESULTS: Recommendations are organized by conference track, including neurological and functional recovery; technology issues; aging with spinal cord injury; and employment, psychosocial and quality of life issues. CONCLUSION: A number of themes emerged across the conference tracks, including the need for improved measures of process and outcome constructs, application of qualitative and quantitative research designs, and use of contemporary statistical analytic approaches. Participants emphasized the value of collaborative research that uses the latest methods, techniques and information.

Outcome measures in spinal cord injury: recent assessments and recommendations for future directions.

STUDY DESIGN: Review by the spinal cord outcomes partnership endeavor (SCOPE), which is a broad-based international consortium of scientists and clinical researchers representing academic institutions, industry, government agencies, not-for-profit organizations and foundations. OBJECTIVES: Assessment of current and evolving tools for evaluating human spinal cord injury (SCI) outcomes for both clinical diagnosis and clinical research studies. METHODS: a framework for the appraisal of evidence of metric properties was used to examine outcome tools or tests for accuracy, sensitivity, reliability and validity for human SCI. RESULTS: Imaging, neurological, functional, autonomic, sexual health, bladder/bowel, pain and psychosocial tools were evaluated. Several specific tools for human SCI studies have or are being developed to allow the more accurate determination for a clinically meaningful benefit (improvement in functional outcome or quality of life) being achieved as a result of a therapeutic intervention. CONCLUSION: Significant progress has been made, but further validation studies are required to identify the most appropriate tools for specific targets in a human SCI study or clinical trial.

Development and measurement properties of the Orthotics and Prosthetics Users' Survey (OPUS): a comprehensive set of clinical outcome instruments.

The need to measure and evaluate orthotics and prosthetics (O&P) practice has received growing recognition in the past several years. Reliable and valid self-report instruments are needed that can help facilities evaluate patient outcomes. The objective of this project was to develop a set of self-report instruments that assess functional status, quality of life, and satisfaction with devices and services that can be used in an orthotics and prosthetics clinic. Selecting items from a variety of existing instruments, the authors developed and revised four instruments that differentiate patients with varying levels of lower limb function, quality of life, and satisfaction with devices and services. Evidence of construct validity is provided by hierarchies of item difficulty that are consistent with clinical experience. For example, with the lower limb function instrument, running one block was much more difficult than walking indoors. The instruments demonstrate adequate internal consistency (0.88 for lower limb function, 0.88 for quality of life, 0.74 for service satisfaction, 0.78 for device satisfaction). The next steps in their research programme are to evaluate sensitivity and construct validity. The Orthotics and Prosthetics Users' Survey (OPUS) is a promising self-report instrument which may, with further development, allow orthotic and prosthetic practitioners to evaluate the quality and effectiveness of their services as required by accreditation standards such as those of the American Board for Certification in Orthotics and Prosthetics that mandate quality assessment.

Transition to home care after stroke: depression, physical health, and adaptive processes in support persons.

A longitudinal design was used to examine adaptation in primary support persons (PSP) of stroke survivors during the transition from hospitalization (T1) to home care (T2). The major purposes of the study were (a) to examine changes in depression, physical health, and contextual and coping factors from hospitalization of the stroke survivor through the first 6-10 weeks of home care; and (b) to identify predictors of depression. Data (N = 136) were collected on depression, physical health, background, survivor illness, and social environmental variables; appraisal of impact; social support resources; and coping skills. Reduction in mean PSP depression was significant at T2, but the change in physical health was not significant. Significant changes occurred in survivor function, family functioning, and three of six coping skills. Hierarchical multiple regression analyses were used to predict depression. T1 variables accounted for 29% of the variance in T1 PSP depression, with gender and appraisal of impact the strongest of seven predictors. T1 depression, T2 health, family functioning, and avoidance coping were the strongest of seven predictors, explaining 50% of the variance in T2 depression. Findings highlight the importance of maintaining caregiver health and preventing depression and identify variables to target for the reduction of PSP depression.

Functional outcomes of persons with brain tumors after inpatient rehabilitation.

OBJECTIVE: To assess the extent of functional gains measured before and after inpatient rehabilitation in patients who have primary or metastatic brain tumors, and to identify whether the tumor type, recurrent tumor, or ongoing radiation influences outcomes. DESIGN: Retrospective, descriptive study. SETTING: A free-standing university-affiliated rehabilitation hospital. PARTICIPANTS: A referred sample of 132 persons, all with functional impairments from a brain tumor and discharged from inpatient rehabilitation during a 3-year time period. INTERVENTION: Comprehensive inpatient rehabilitation. MAIN OUTCOME MEASURES: Functional status and rate of functional improvement (gain) as measured by the FIM instrument and FIM efficiency. RESULTS: Mean FIM efficiencies +/- standard deviation for motor (.82 +/-.69) and cognitive (.15 +/-.24) functions were equivalent across primary and metastatic tumor types (F =.42, df = 3,103, p = NS; F =.45, df = 2,104, p = NS, respectively); patients with metastatic disease had a significantly shorter length of stay at 18 +/- 12.3 days (t30,6 = 2.3, p =.03). Patients who received radiation during rehabilitation had a significantly greater (F = 4.1, df = 1,105, p <.05) motor efficiency score (1 +/-.79) than those who did not (.78 +/- 0.7). Patients with recurrent tumors made FIM cognitive changes equivalent to those of persons undergoing rehabilitation after their initial diagnosis, but their motor efficiency scores were significantly smaller (.55 +/-.39 vs.98 +/-.68, respectively) (F = 5.77, df = 1,85, p =.018), which reflected a significantly smaller FIM motor change. CONCLUSIONS: Metastatic or primary brain tumor type does not affect the efficiency of functional improvement during inpatient rehabilitation. Patients receiving concurrent radiation therapy make greater functional improvement per day than those not receiving radiation. Patients with recurrent tumors make significantly smaller functional motor gains than those completing inpatient rehabilitation after the tumor's initial diagnosis.

Incidence of and risk factors for medical complications during stroke rehabilitation.

BACKGROUND AND PURPOSE: The aims of this study were to examine the frequency, types, and clinical factors associated with medical complications that occur during inpatient rehabilitation and to identify risk factors for complications that require a transfer to an acute care facility. METHODS: A cohort of 1029 patients consecutively admitted for inpatient stroke rehabilitation was studied. Demographic and stroke information, impairment, preexisting medical conditions, and admission laboratory abnormalities were recorded. Medical complications, defined as new or exacerbated medical problems, were documented for each patient. Complications that required transfer off rehabilitation were noted. Univariate and multiple logistic regression analyses were used to determine factors that were associated with risk of medical complications and risk of transfer off rehabilitation. RESULTS: Seventy-five percent of patients experienced >/=1 medical complication during rehabilitation. Significant factors for the development of any medical complication included greater neurological deficit (odds ratio [OR], 4.10; confidence interval [CI], 1.88 to 8.91), hypoalbuminemia (OR, 1.71; 95% CI, 1.15 to 2.52), and history of hypertension (OR, 1.81; 95% CI, 1.27 to 2.59). Nineteen percent of patients had a medical complication that required transfer to an acute care facility. Significant factors for transfers were elevated admission white blood cell counts (OR, 1.92; 95% CI, 1.32 to 2.79), low admission hemoglobin levels (OR, 1.89; 95% CI, 1.32 to 2.68), greater neurological deficit (OR, 2.46; 95% CI, 1.37 to 4.39), and a history of cardiac arrhythmia (OR, 1.79; 95% CI, 1.18 to 2.67). CONCLUSIONS: Medical complications are common among patients undergoing stroke rehabilitation. A significant number of these medical complications may require a transfer to an acute facility.

Outcomes of cardiopulmonary arrest in an acute rehabilitation setting.

OBJECTIVE: Fifty consecutive cases of cardiopulmonary arrest with administration of cardiopulmonary resuscitation (CPR) during a 6-yr period at a freestanding academic acute rehabilitation hospital were identified. DESIGN: Medical records of 49 patients were available for review. Outcomes of survival of arrest, survival to 24 hr postarrest, survival to discharge from the hospital were determined, and chi2 or Fisher's exact tests were performed to investigate relationships between survival and admission functional status, age, gender, and medical comorbidities. RESULTS: Forty-three percent of patients survived the initial arrest, 37% survived to 24 hr post-CPR, and 18% survived to hospital discharge. We were unable to identify any statistically significant predictors of survival post-CPR. Six of the nine survivors returned to the acute rehabilitation setting after cardiopulmonary arrest, and five of these patients made significant functional gains. CONCLUSIONS: Outcomes after CPR in patients undergoing acute rehabilitation in one setting were not significantly different from those reported for patients in other healthcare settings. These data may be used by healthcare professionals to enhance discussions concerning advance healthcare planning (including resuscitation plans) with patients and families. Larger studies are needed to clarify the prognostic role of prior functional status in predicting CPR outcomes, particularly in the context of various diagnostic categories and age groups.

Measurement properties of the Galveston Orientation and Amnesia Test (GOAT) and improvement patterns during inpatient rehabilitation.

OBJECTIVES: To determine the measurement properties of the Galveston Orientation and Amnesia Test (GOAT) using the Rasch model and rating scale analysis (RSA). DESIGN: Calibration of data collected weekly during rehabilitation. SETTING: Six inpatient rehabilitation facilities. PARTICIPANTS: 77 patients admitted for their first rehabilitation after traumatic brain injury. RESULTS: Rescoring the items as dichotomies, three strata of posttraumatic amnesia (PTA) were identified. All items cohered to define a single construct and the item hierarchy confirmed their hypothesized ordering. CONCLUSIONS: Equal-interval measures of PTA were developed that exhibited good reliability and validity. A self-scoring key was developed to more efficiently assess PTA.

Rating scale analysis of the Agitated Behavior Scale.

OBJECTIVE: Evaluate the measurement properties of the Agitated Behavior Scale (ABS) using rating scale analysis. SAMPLES: Sample 1: 900 observations of 100 individuals with traumatic brain injury; Sample 2: 204 observations of 102 persons with dementia; Sample 3: 241 observations of 6 individuals with anoxia. RESULTS: The calibration indicated that the rating scale was used as intended. The hierarchies of item difficulty were similar across samples. Person and item separation values were within the acceptable range for the TBI sample. Generally, the items work well together, however 3 items misfit the measurement model moderately. CONCLUSIONS: Agitation as measured by the ABS is best represented as a unitary construct. Results provide additional support for the reliability and validity of the ABS.

Rating scale analysis of the Neurobehavioral Cognitive Status Examination.

OBJECTIVE: Evaluate the measurement properties of the Neurobehavioral Cognitive Status Examination (NCSE) using rating scale analysis. DESIGN: Calibration of item responses collected as part of a study examining characteristics of case-management programs and treatment outcomes. SETTING: Three outpatient rehabilitation facilities. PARTICIPANTS: Convenience sample of 186 community-dwelling adults with TBI. RESULTS: Several rating scale analyses were performed to construct a unidimensional measure. Deletion of easy and misfitting items created a better targeted test (generated more spread among individuals) without increased error. CONCLUSIONS: If used with a community-based sample, three strata can be differentiated despite a skewed distribution. Recommended applications are with samples with considerably more cognitive impairment.

The construct validity of the readiness to change questionnaire for persons with TBI.

OBJECTIVE: To examine the reliability and validity of the Readiness to Change Questionnaire (RTC) among persons with recent traumatic brain injury. DESIGN: Survey. SETTING: Inpatient rehabilitation. PARTICIPANTS: One-hundred twenty-six persons with recent TBI. RESULTS: In the first step of the analyses the RTC measure was rescaled and shortened to produce a coherent linear measure of readiness to change. Subsequent analyses showed that the linear measure fit a three stage model of change and correlated in meaningful ways with independent measures of alcohol problem severity. CONCLUSIONS: The RTC measure can be substantially improved by utilizing results obtained from rating scale analysis. The resulting 10-item linear scale has good internal consistency, a theoretically sound factor structure and meaningful correlations with external variables. Measuring readiness to change may be useful for tailoring treatment and predicting outcomes, though more research is needed in this area.

Measuring the impairment consequences of spinal cord injury.

The objectives of this study were to develop and validate an equal-interval measure of neurologic impairment from the International Standards for Neurological and Functional Classification of Spinal Cord Injury Patients developed by the American Spinal Injury Association. These standards were used to rate impairment at admission and discharge to Model System facilities. The results demonstrate that the standards fulfill their purpose of characterizing sensory-motor impairment. Developed was a self-scoring key that rehabilitation clinicians can use to obtain a measure of severity that combines sensory and motor level ratings and completeness classifications to describe impairment more precisely and illustrate the magnitude of reductions in impairment. This measure can be used to monitor improvement over time and compare severity across individuals or groups.