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Standardizing Outcome Assessment in Parkinson Disease: A Knowledge Translation Project

Yorke, Amy M. MPT, PhD; Trojanowski, Suzanne DPT; Fritz, Nora E. DPT, PhD; Ludwa, Angee MSPT; Schroeder, Matthew DPT, MS, ATC

Author Information
Journal of Neurologic Physical Therapy: January 2021 - Volume 45 - Issue 1 - p 21-27
doi: 10.1097/NPT.0000000000000343

Abstract

INTRODUCTION

Evidence-based practice (EBP) is an expectation of rehabilitation professionals, yet research generated today may take over 17 years to be implemented into clinical practice.1 Assessing patients with standardized outcome measures (SOM) is essential to determine whether a patient is demonstrating change with rehabilitation; however, the utilization of SOM varies. In a survey study, 47.8% of physical therapists reported using SOM in practice, and 90% of the therapists who used SOM agreed that they enhanced communication with patients and helped to direct a plan of care.2 Although therapists report using SOM, chart audits reveal that compliance is lower (13%-31%) than reported values; and when interviewed, physical therapists admitted to overestimating their use.3–5

Despite the evidence behind SOM, their use in clinical practice is low.2 Knowledge translation (KT) serves as a means to bridge the gap between evidence and real-world practice.6 KT is the process that includes the synthesis, dissemination, exchange, and ethically sound application of knowledge to improve health, provide more effective health services and products, and strengthen the health care system.6 KT accounts for the numerous factors (barriers and facilitators) that influence the use of SOM, including clinician knowledge, education, and perceived value; organizational support and priority; practice considerations; and patient characteristics.7

To facilitate the uptake of evidence into clinical practice, best practices for KT implementation have been investigated. Multifaceted KT strategies that address the barriers to incorporating evidence have been most effective.8,9 Strategies that included education,10 KT teams,11 clinical partnerships with academic researchers,3 use of a knowledge broker,3,12–14 management support,13 and audit and feedback3 have all demonstrated success in modifying therapist behavior to incorporate the evidence into their clinical practice.

Parkinson disease (PD) is a progressive neurodegenerative disease resulting in functional declines.15 In 2014, the APTA Academy of Neurologic Physical Therapy's Evaluation Database to Guide Effectiveness (EDGE) PD Task Force put forth the PD-EDGE document, which provided evidence-based recommendations for the use of SOM in the assessment of individuals with PD receiving physical therapy.16 The PD-EDGE highly recommended 11 measures for clinical use.16 The development of recommendations and publication of knowledge products, such as the PD-EDGE document, are not sufficient for ensuring adoption and improving clinical practice.17 Individuals with PD may see a physical therapist multiple times over the course of their disease. The use of SOM over time is critical for monitoring the impairments, activity limitations, and participation restrictions in persons with PD and could serve to enhance communication, limit variability in practice, and improve plans of care within and across clinical settings. The purpose of iKNOW-PD (integrating KNOWledge translation for Parkinson Disease) was to develop and implement a theoretically informed, multimodal, tailored KT intervention to facilitate implementation of a SOM battery used in patients with PD admitted to a network of outpatient clinics.

METHODS

Figure 1 summarizes the timeline and methodological processes used for iKNOW-PD.

Figure 1.
Figure 1.:
Knowledge-to-action process6 and timeline of iKNOW-PD. The middle of Figure 1 is comprised of the “knowledge funnel” demonstrating different levels of knowledge creation. The end of the funnel leads to the “action cycle.” Timeline of activities related to iKNOW-PD starting with initial conversations in 2017, progressing to multiple planning meetings in 2018, and culminating in data tracking from 2018-2019. Adapted from Graham et al,6 with permission of Wolters Kluwer Health, Inc.

Project Framework

This project represented a partnership among researcher clinicians and Ascension Genesys Physical Therapy (AGPT), a group of private, non-profit hospital-based clinics that provide outpatient physical and occupational therapy services in the greater Flint, Michigan area. Initial conversations with the management occurred in 2017 (Figure 1), with the general goal for AGPT to be engaged in research with the University of Michigan-Flint (UM-Flint). Through discussions, and a collective interest in the topic of improving the care for patients with PD, a project to standardize the outcome measures used in PD was mutually decided upon, and titled iKNOW-PD. The project was reviewed, categorized as a quality assurance/improvement activity, and determined to be “not regulated” by UM-Flint IRB (HUM00137043). Implementation of iKNOW-PD was guided by the knowledge to action (KTA) framework. The KTA framework provides a systems perspective, acknowledging that KT is dynamic and complex.6

Identify Problem; Determine Know/Do Gap; Identify, Review, Select Knowledge

In the fall of 2017, a link to a digital survey was emailed to 9 physical (n = 7) and occupational therapists (n = 2) employed at 4 AGPT clinics who evaluated patients with PD. The purpose of the survey (see Appendix A, Supplemental Digital Content 2, available at: http://links.lww.com/JNPT/A330) was to determine the know/do gap and to assess for barriers/facilitators for the implementation of a SOM battery in patients with PD. Through the results of this survey (Table 1), face-to-face meetings with the therapists, and review of the PD-EDGE, the following research question was identified: Are patients with PD, who are admitted to AGPT outpatient rehabilitation, assessed with a SOM battery on initial evaluation and discharge to capture the common impairments, activity limitations, and participation restrictions in people with PD? This research question addresses gaps that were identified in the survey including variability in practice and a lack of utilizing a standardized outcome assessment battery across therapists and clinic settings.

Table 1 - iKNOW-PD Survey 1 Results (n = 9)
Strongly or Somewhat Agree Neutral Somewhat or Strongly Disagree
n (%) n (%) n (%)
I have sufficient knowledge to use standardized assessments in patients with PD. 6 (67) 2 (22) 1 (11)
I would like to know more about the use of standardized assessments in patients with PD before I decide to use them. 8 (89) 0 (0) 1 (11)
I am free to make my own clinical decision when using standardized assessments in patients with PD. 7 (78) 1 (11) 1 (11)
In general, I resist using standardized assessments in patients with PD. 0 (0) 0 (0) 9 (100)
Using standardized assessments improves the quality of patient care in patients with PD. 7 (78) 0 (0) 2 (22)
The use of standardized assessments motivates my patients with PD. 3 (33) 4 (44) 2 (22)
I use standardized assessments to educate the patient/family. 8 (89) 0 (0) 1 (11)
I feel confident I choose the best standardized assessment for patient care. 8 (89) 1 (11) 0 (0)
There are so many different assessments, I do not know which ones to use. 3 (33) 1 (11) 5 (56)
I find using standardized assessment a problem because I have had no training in using them. 2 (22) 0 (0) 7 (78)
Patients value the use of standardized assessments to gain insight into their functioning. 5 (56) 4 (44) 0 (0)
The kinds of patients I treat are unsuitable for the use of standardized assessments. 2 (22) 2 (22) 5 (56)
Coworkers (PTs) support the use of standardized assessments. 8 (89) 0 (0) 1 (11)
My supervisor supports the use of standardized assessments. 8 (89) 0 (0) 1 (11)
The use of standardized assessments is part of the organizational goals of our practice. 8 (89) 0 (0) 1 (11)
Standardized assessments are valuable when speaking about a patient to the health care team. 8 (89) 0 (0) 1 (11)
I find using standardized assessments a problem because I do not have (physical) space in my practice. 3 (33) 0 (0) 6 (67)
There are enough standardized assessment tools to use in my daily clinical practice. 6 (67) 0 (0) 3 (33)
Using standardized assessments requires additional financial compensation. 0 (0) 3 (33) 6 (67)
Using standardized assessments might strengthen negotiations with insurers. 7 (78) 1 (11) 1 (11)
I have access to standardized measurements. 7 (78) 0 (0) 2 (22)
Abbreviations: PD, Parkinson disease; PT, physical therapy.

Adapt Knowledge to Local Context

A meeting was held in early 2018 among researcher clinicians, management, and physical and occupational therapists in which the results of survey 1 (100% response rate) were shared, KT and the KTA cycle were explained, iKNOW-PD was introduced, and the PD-EDGE recommendations (knowledge creation) were reviewed. The therapists collectively believed that both upper and lower extremity performance was important to assess in patients with PD, and they expressed concern about the number of SOM that would be required on initial evaluation and discharge. At the conclusion of the first meeting, the 9 clinicians were given another digital survey (see Appendix B, Supplemental Digital Content 3, available at: http://links.lww.com/JNPT/A331) to complete. Survey 2 asked participants to rank their level of agreement (using a slider bar anchored with strongly disagree = 0, neutral = 5, strongly agree = 10) on the list of measures included in the PD-EDGE, to include in the iKNOW-PD battery. In addition, therapists were asked what they believed the appropriate number of SOM should be required at initial evaluation and discharge. Table 2 presents the results of survey 2. The average number of SOM therapists thought should be completed on initial evaluation and discharge was 3.8 (range 3-5). Five of the PD-EDGE highly recommended SOM had a mean of more than 7.0 and included the Mini-Balance Evaluation Systems Test (miniBESTest), 9-Hole Peg Test (9HPT), 5 times sit-to-stand (5TSTS), Timed Up and Go Cognitive (TUG-Cog), and the 10-m walk test (10MWT). Since the TUG-Cog is a component of the miniBESTest, it was removed from the final test battery. The clinicians agreed that among all therapists, across the 4 sites, the 4 iKNOW-PD measures (9HPT, miniBESTest, 10MWT, and 5TSTS) would be completed at initial evaluation and discharge on all patients admitted with PD.

Table 2 - iKNOW-PD Survey 2 Results (n = 5)
Rank Test Mean Sum
1 miniBESTest 9.4 47
2 9-Hole Peg Test 8.8 44
3 5 times sit-to-stand 8.4 42
4 Timed Up and Go Cognitive 8.2 41
5 10-m walk test 7.2 36
6 Parkinson's Fatigue Scale 6.8 34
7 Activities-specific Balance Confidence Scale 6.6 33
8 6-min walk 6.6 33
9 Freezing of gait questionnaire 6.4 32
10 Parkinson's Disease Questionnaire-39 6.2 31
11 Functional Gait Assessment 6.2 31
12 Parkinson's Disease Questionnaire-8 5.4 27
13 MDS-UPDRS Part II 4.8 24
14 MDS-UPDRS Part I 3.8 19
15 MDS-UPDRS Part III 3.8 19
Abbreviations: MDS-UPDRS, Movement Disorder Society-Unified Parkinson's Disease Rating Scale; miniBESTest, Mini-Balance Evaluation Systems Test.

Assess Barriers/Facilitators to Knowledge Use

Results of survey 1 (Table 1) indicated that therapists overall were engaged in using evidence and SOM. Leadership was supportive in implementing evidence into practice and had invested time and money toward increasing therapists' knowledge and skills through continuing education (eg, LSVT BIG and PWR!). In addition, some barriers identified included varying knowledge and skills, minor contrasts in practice beliefs, different clinical environments (eg, space to complete a 6-minute walk), and availability of resources and equipment.

Select, Tailor, Implement Interventions

A multimodal intervention consisting of specific implementation strategies was tailored to ensure uptake of the iKNOW-PD test battery.18,19 Training and education occurred through the distribution of educational materials (custom binders for each therapist that included standardized instructions for the iKNOW-PD battery), and educational outreach visits at all 4 clinic sites (to ensure consistency of outcome assessment and changes to physical environment). In addition, ongoing training occurred throughout the process. Grant funding was acquired and was used to purchase the equipment required to execute the iKNOW-PD test battery (including stopwatches, measuring wheels, tape, inclines, and foam). With supervisor support, infrastructure changes were made including a modification to the electronic medical record (EMR) to prompt the therapists to execute the iKNOW-PD test battery. To manage the barrier of time, occupational therapists performed the 9HPT in patients receiving both physical and occupational therapy services. Monthly follow-up meetings allowed for the clinician researchers and therapists to celebrate successes and discuss challenges. Therapists became more comfortable over time when documenting a “0” if the patient could not execute the outcome measure as directed (eg, 5TSTS completed with arms); whereas during early discussions, the therapists struggled with this concept. One challenge discussed was managing the time demands of the clinic with the bradykinesia that patients with advanced PD presented with. Therapists were encouraged to use their clinical decision-making to determine whether a specific measure was appropriate to execute based on patient presentation and to document accordingly.

Monitor Knowledge Use

Meetings were held on a monthly basis to discuss current status, share achievements, troubleshoot challenges, and review the current literature on topics related to PD. The schedule and agenda for each meeting can be found in Appendix C, Supplemental Digital Content 4 (available at: http://links.lww.com/JNPT/A332).

Evaluate Outcomes

A data use agreement between the University of Michigan-Flint and AGPT was completed in February 2019, approximately 20 months after the original contact and 9 months after implementation of iKNOW-PD. De-identified charts were evaluated by the research team to determine therapist adherence to the selected iKNOW-PD battery.

From January 2017 through June 2018 is the period before the iKNOW-PD intervention was initiated (pre-iKNOW-PD), while July 2018 through April 2019 is the period after the iKNOW-PD intervention had been initiated (post-iKNOW-PD). A total of 89 charts of persons with PD were reviewed. In 13 charts, the primary purpose of the visit was categorized as musculoskeletal (eg, low back pain and shoulder dysfunction) and the therapists made a decision to prioritize outcome assessment related to the primary impairment rather than the iKNOW-PD battery at the time of initial evaluation. In addition, 4 charts were excluded because the patients were diagnosed with Parkinson-plus syndromes. Thus, 72 patient charts were included in data analysis. Charts were reviewed for SOM usage on initial evaluation and discharge. Frequency of use and average number of SOM pre- and post-iKNOW-PD were calculated. To calculate differences in outcome assessments between pre- and post-iKNOW-PD, a Mann-Whitney U test was completed. Analyses were carried out using SPSS Version 26 software for Windows (IBM Corporation, Armonk, New York). Statistical significance was set at P < 0.05.

RESULTS

Therapists demonstrated a statistically significant increase (P < 0.001) in their use of the iKNOW-PD battery pre-iKNOW-PD and post-iKNOW-PD at both initial evaluation and discharge (Table 3). Therapists overall did not change the overall mean number of standardized measures used at initial evaluation (P = 0.389) or discharge (P = 0.121) when comparing pre- to post-iKNOW-PD. The 5 most frequent measures used pre-iKNOW PD were 5TSTS, TUG, Activities-specific Balance Confidence (ABC) Scale, single-leg stance, and Rhomberg eyes open. The 5 most frequent measures were the same post-iKNOW-PD except Rhomberg was replaced by the 9HPT. Figure 2 demonstrates the use of the iKNOW-PD standardized outcome assessments on initial evaluation and discharge pre- and post-iKNOW-PD. Clinicians demonstrated behavior change in the uptake of the iKNOW-PD battery for persons with PD, as evidenced by a statistically significant increase in the use of measures (P < 0.001). Therapists increased the use of the 10MWT on initial evaluation from 20% to 66.7%, representing an increase of 46.7%. In addition, therapists increased their use of the 9HPT by 35.6%, and the miniBESTest by 30.4%. 5TSTS use was increased by only 5.9% due to its frequent use pre-iKNOW PD. When reviewing discharge notes, the therapists continued to demonstrate a high usage of the 5TSTS and increased use of the 10MWT, miniBESTest, and 9HPT by more than 30%.

Table 3 - Standardized Outcome Measure Use on Results of iKNOW-PD
Pre-iKNOW-PD Post-iKNOW-PD P Value
SOM used at initial evaluation 0.389
Mean (SD) 9.0 (3.0) 9.6 (2.1)
Range 1-17 7-13
SOM used at discharge 0.121
Mean (SD) 7.2 (4.3) 8.7 (3.9)
Range 0-16 0-14
Number of iKNOW-PD SOM at initial evaluation, mean (SD) 1.9 (1.2) 3.1 (0.8) <0.001
Number of iKNOW-PD SOM at discharge, mean (SD) 1.5 (1.3) 2.8 (1.1) <0.001
5 most frequent SOM documented 5TSTS 5TSTS N/A
TUG TUG
ABC ABC
SLS SLS
Rhomberg EO 9HPT
Abbreviations: ABC, Activities-specific Balance Confidence Scale; 9HPT, 9-Hole Peg Test; 5TSTS, 5 times sit-to-stand; Rhomberg EO, Rhomberg eyes open; SLS, single-leg stance; SOM, standardized outcome measure; TUG, Timed Up and Go.

Figure 2.
Figure 2.:
Graphs of frequency of use iKNOW-PD outcome assessment battery, pre and post iKNOW-PD on initial evaluation and discharge.

A focus group interview with the therapists was completed in December 2018 to gather qualitative information on the KT process and iKNOW-PD. Overall, the therapists reported working with the research team had been a positive experience. In particular, they recognized that they were already using SOM; however, there was variability among which measures were used by different therapists. iKNOW-PD gave them the opportunity to use a core set of measures within their clinics. Interestingly, this contrasted with initial survey findings where therapists reported utilizing a large number of SOMs but felt the number to be required for iKNOW-PD should be between 3 to 5 measures. Therapists reported that patients were interested to see their own progress, which encouraged sharing of the results of the SOM. Therapists also reported learning that not all measures were appropriate for every patient, in particular, patients who were lower functioning struggled with the miniBESTest, 9HPT, and 5TSTS. The therapists felt having a set of measures for patients with a lower level of function would be helpful to their clinical practice.

Sustain Use

An additional theme that arose from the December 2018 focus group was that therapists wished to continue collaboration with the academic research team. This included ongoing check-ins and reports on adherence (quarterly) to sustain the use of the iKNOW-PD protocol. Therapists also wished to engage in future KT projects.

DISCUSSION

The major finding of this study was that implementing a SOM battery for patients with PD in an outpatient setting can be successfully implemented with the use of the KTA cycle. Our data show that therapists significantly (P < .001) increased their use of SOM in patients with PD over a 6-month period. Standardizing outcome assessment reduces measurement variability across sites and therapists, and is beneficial to monitor progression over an episode of care and over time, particularly in individuals with neurodegenerative diseases such as PD. Selecting what outcome measures to use is commonly determined by the individual therapist who may be influenced by their knowledge, skills, coworkers, and payer requirements. iKNOW-PD did not remove individual therapist decision-making, but provided a set battery of SOM across therapists and clinical sites. Additional measures could be completed as deemed appropriate by the therapist.

The standardized battery was selected by a team of clinicians and academic researchers based on the best available evidence.16 Because people with PD demonstrate motor deficits that contribute to increasing disability and poorer quality of life,20–24 the iKNOW-PD battery captured both upper (9HPT) and lower extremity (10MWT, miniBESTest, and 5TSTS) functions. Capturing gait speed longitudinally is critical in persons with PD; gait speed is known to decline 0.02 m/s every 6 months over a 2-year period in persons with PD.24 Our results show that the 10MWT, a measure of gait speed, demonstrated the greatest increase (46.7%) from pre- to post-iKNOW-PD. Therapists demonstrated an increase in the use of the miniBESTest, which can be used to identify those at risk for falls and to direct treatment in people with PD by targeting specific balance impairments.25 The rise in the use of the 9HPT across therapists promoted interdisciplinary communication. Both the 5TSTS and the ABC were used frequently pre- and post-iKNOW-PD, and can provide useful information about risk for falls with the potential to direct treatment.26 Recently, the ABC, 5TSTS, and 10MWT have been identified as core measures to use with patients with neurologic conditions across practice settings who have the capacity and ability to improve balance confidence, transfers, and gait.27 However, the core measure set does not include recommendations for upper extremity function. Patients with PD commonly demonstrate impaired coordination, and including the 9HPT in the iKNOW-PD battery allowed assessment of the upper extremity.

Acknowledging and addressing barriers was critical to successful implementation of a SOM battery. The barriers identified by the therapists are in agreement with barriers identified by prior studies, including lack of time, inconvenience, lack of familiarity, lack of training, and lack of resources such as staffing and automation.2,28–32 In our sample, therapists demonstrated decreased compliance with measurements at discharge compared with initial evaluation. Similarly, 66.1% of therapists who participated in a national study identified that SOMs are often not completed at discharge, providing a gap of information about treatment response.2 Settings can also impact implementation of SOM with outpatient therapists demonstrating lower compliance than inpatient therapists when completed in patients with stroke.33 The therapists reported a lack of equipment and knowledge of SOM as barriers to implementing SOM. To overcome these barriers, we provided standardized equipment and instructions to all sites. Further, the knowledge broker, who was located at the clinic with the largest number of patients (73.6%; n = 53) and therapists (55.6%; n = 5), was readily available to support the day-to-day challenges.3 The academic research team visited each of the 4 locations in person to provide training and ensure compliance with the project. Additional strategies to support clinics who have only one therapist and who see a variety of patient populations may be explored in the future. An additional barrier of this study was the extended amount of time taken to execute a data use agreement. This delay did not allow for monthly feedback to be provided to the therapists on their adherence to the iKNOW-PD test battery.

In addition to overcoming barriers, capitalizing on facilitators is critical for implementation across clinic sites. Consistent with prior findings, a multifaceted intervention, grounded within a framework, such as the KTA cycle, is most successful in changing behaviors.8 A key facilitator for the success of this project was the collaboration between the researcher clinicians, management, and therapists. Face-to-face meetings allowed for interaction, including discussion and feedback. Information was presented in both verbal and written formats to address a variety of learning styles. The final iKNOW-PD battery was selected by the therapists, and management was able to make changes in the EMR to facilitate adherence.

Sustaining behavior change is challenging and complex. Monthly audits and feedback provided to therapists do not consistently improve therapists' adherence to executing outcome assessments over time.33 As noted in previous work, even with targeted effort, little more than half of the therapists reported using SOM after intervention, requiring ongoing efforts for sustaining use.34 The primary method for sustaining use during iKNOW-PD was consistent face-to-face meetings and check-ins between the research clinicians, management, and therapists. Ongoing check-ins as well as ongoing collaborative research between the clinic sites and the research team may assist in the long-term sustainability of the project.

Standardizing outcome measures within a clinical setting provides a foundation for future research. Ensuring that clinicians are using measurements with strong psychometrics allows clinic management to provide sound support for skilled care to third-party payers. In addition, using SOM to assist the therapist in differentiating the primary impairment/movement system diagnosis in a person with PD may help to better direct intervention and improve patient outcomes.35,36 Utilizing SOM is a critical component of EBP, and our future work will examine the interpretation of SOM to drive decision-making for intervention and the impact on patient outcomes.

There are several limitations in this study. The sample for this KT project was limited to a small group of therapists employed at 4 different clinics within a hospital-based outpatient system. Since all therapists within this system who worked with patients with PD participated in the study, no control group was included. In addition, the publication of the Core Set of Outcome Measures for Adults with Neurological Conditions occurred after iKNOW-PD was initiated.27 A key difference between the core set and the iKNOW-PD battery is the core set recommends use of the Berg Balance Scale, Functional Gait Assessment, ABC Scale, and 6MWT. Therapists engaged in iKNOW-PD were interested in using the 6MWT, but due to space constraints at several of the clinics, this test was not feasible to be a part of the iKNOW-PD battery, and was therefore excluded from the iKNOW-PD battery. KT tools released by the Academy of Neurologic Physical Therapy may overcome the space constraints of the 6MWT, and a current collaborative study is underway to implement this core set of outcome measures in all patients with neurologic conditions.37

CONCLUSIONS

A multimodal KT intervention facilitates the transfer of evidence-based SOM for persons with PD into clinical practice. Our data demonstrate that a collaborative intervention that includes both an academic research team and a clinical partner is effective in facilitating sustained behavior change among rehabilitation therapists. Future studies should determine the impact that SOM use can have on both therapist decision-making and patient outcomes.

ACKNOWLEDGEMENTS

We thank Andrew Cassidy, Amber Baldwin, Emily Hein, and all therapists at Ascension Genesys for their contributions. The authors thank the facilitators of the Academy of Neurologic Physical Therapy Knowledge Translation Summit presented at the Combined Sections Meeting in San Antonio in 2017. The iKNOW-PD project received funding from the Michigan Physical Therapy Association Institute for Education and Research.

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Keywords:

implementation science; knowledge translation; outcome measure; Parkinson disease

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