FEATURE
Perceptions of Practice Guidelines for People with Spinal Cord Injury
Gail Powell-Cope1, PhD, ARNP, FAAN, D. Helen Moore1, PhD, BSW, Frances M. Weaver2, PhD & Susan Thomason3, MN, RN, ACNS-BC, CRRN, CWN 1 Center of Innovation on Disability and Rehabilitation Research VISN 8, Department of Veterans Affairs (VA), Veterans Health Administration, Tampa, FL, USA 2 HSR&D Center of Innovation, Hines VA Hospital and Stritch School of Medicine, Loyola University, Chicago, IL, USA 3 Tampa VA Research and Education Foundation, Tampa, FL, USA
Keywords
Abstract
Upper limb; clinical practice guideline; spinal cord injuries. Correspondence Gail Powell-Cope, Tampa Co-Director, Center of Innovation on Disability and Rehabilitation Research VISN 8, Department of Veterans Affairs, 8900 Grand Oak Circle, Tampa, FL. E-mail: [email protected] Accepted September 15, 2013. doi: 10.1002/rnj.134
Purpose: The Consortium for Spinal Cord Medicine published clinical practice guidelines (CPG) related to upper limb (UL) preservation in people with spinal cord injury (SCI) in 2005. The purpose of this qualitative research was to identify stakeholder agreement with recommendations, performance gaps, and barriers and facilitators to CPG implementation. Design: This 6-month study focused on the perspectives of healthcare providers, veterans, and key informants. The Promoting Action on Research Implementation in Health Services (PARiHS) was used to frame the interview questions, analyze data from focus groups and interviews, and develop conclusions and recommendations. Method: SCI Centers at the Tampa, Seattle, and Hines Veterans’ hospitals participated. The purposeful sample for the focus groups included 32 healthcare providers, 21 veterans with SCI, and 3 key informants. Analysis of qualitative data netted the percent of agreement with recommendations, performance gaps, and strategies for CPG implementation. Findings: Content analysis of focus group data revealed that healthcare providers agreed or partially agreed with 20 (57%) of the 35 CSCM CPG on UL preservation of function. Agreement ranged from 100% for assessment to 28% for equipment use. Barriers for implementation related to administrative and system issues. Conclusion: Consideration of gaps, barriers, and facilitators to implementation will assist clinicians to target interventions to preserve UL function.
Introduction A spinal cord injury (SCI) is damage to the sensory, motor, or autonomic nerves that are protected by the spinal vertebrae (Sarhan, Saif, & Saif, 2012). Spinal cord injury can result in varying degrees of functional impairment depending on injury location and severity. The
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Consortium for Spinal Cord Medicine (CSCM) published several evidence-based clinical practice guidelines (CPG) to address common issues that are SCI-related. The CSCM, formed in 1995 and sponsored by the Paralyzed Veterans of America, consists of 22 healthcare professional, payer, and consumer organizations whose mission is to advance the care of people with SCI © 2013 Association of Rehabilitation Nurses Rehabilitation Nursing 2015, 40, 100–110
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through the development and dissemination of evidencebased CPGs. The CPGs of the CSCM are considered best practices for the care of people with SCI and are used internationally by rehabilitation specialists and organizations. Translating evidence into practice for preserving limb functioning is a priority for the Veterans’ Health Administration (VHA) and SCI Quality Enhancement Research Initiative (QUERI) (Spinal Cord Injury QUERI Center, 2009). It is also a concern for SCI Model Systems in the private sector (Dalyan, Cardenas, & Gerard, 1999; National Spinal Cord Injury Statistical Center [NSCISC], 2012). In 2005, the CSCM published a CPG on the preservation of upper limb (UL) function following SCI that contained 35 recommendations (CSCM, 2005). Each recommendation was graded on the strength of evidence and was meant to be practical to implement. Most people with SCI have increased biomechanical challenges and use their ULs to compensate for loss of lower limb function (CSCM, 2005). People use ULs to propel wheelchairs, perform pressure reliefs to avoid pressure ulcers, transfer to and from the bed, shower trolley, and toilet, and perform other weight-bearing tasks. Individuals tend to report more UL pain during pressure relief, transfers, and mobility than other activities (Dalyan et al., 1999). People with SCI frequently have shoulder overuse over the years which is likely to result in pain, decreased shoulder function, and compromised community participation (Beekhuizen, 2005; NSCISC, 2012; Nyland, Quigley, Huang, Lloyd, & Nelson, 2000; Rintala, Holmes, Fiess, Courtade, & Loubser, 2005; Ullrich, Jense, Loeser, Cardenas, & Weaver, 2008). Upper limb overuse injuries and dysfunction are expected to increase across the SCI population as life expectancy increases for people with SCI (NSCISC, 2013). The Promoting Action on Research Implementation in Health Services (PARiHS) model, a conceptual framework that evaluates the likely success of translation of research into practice, provided the conceptual framework for this study (Rycroft-Malone, 2004; Schaffer, Sandau, & Diedrick, 2013). According to this model, a successful implementation of research into practice is a function of the interplay of three core elements: (1) the level and nature of the evidence to be used (e.g., research evidence, clinical experience, patient experience), (2) the context or environment in which the research is to be placed (e.g., cultural, leadership, evaluation), and (3) the method by which the research implementation process is to be facilitated (e.g., opinion leaders, facilitators) (Kitson, Harvey, & McCormack, 1998; Kitson et al., 2008). The PARiHS © 2013 Association of Rehabilitation Nurses Rehabilitation Nursing 2015, 40, 100–110
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model positions each of the foregoing elements on a lowto-high continuum, and predicts successful research implementation under conditions of uniformly high placement of the elements on the continuum. In lieu of others, the research team chose the PARiHS model to set up the study given that the model’s specific focus is on the contextual determinants of knowledge translation success or failure. The content of the interview questions, data analysis, and interpretation process reflected the contextual focus of the conceptual model chosen and perceptions of evidence underlying the CPG recommendation. Given the high prevalence of UL pain and dysfunction in people with SCI, and the evidence-based CPG that was developed by the CSCM, objectives of this descriptive study were to: (1) determine provider and patient agreement with CPG recommendations for preserving UL function, (2) identify barriers and facilitators for implementing CPG recommendations, and (3) identify recommendations for improving implementation. Questions were: (1) What are the gaps in performance associated with routine assessment, prevention, and treatment of UL pain and function for people with SCI? (2) What are the barriers and facilitators for routine assessment, prevention, and treatment of UL pain and function for people with SCI? (3) Given perceptions of barriers and facilitators, what actions would improve implementation of CPG recommendations? Methods Setting The study was conducted in three VHA Spinal Cord Injury/Disorders (SCI/D) Centers in Tampa, Hines (Chicago), and Seattle. Study Design This 6-month descriptive study addressed research questions from three perspectives: veterans with SCI, health-care providers, and key informants. The study received IRB approval from the University of South Florida, Tampa, FL (IRB 104600); University of Washington, Seattle, WA (IRB 06-1386-V/E); and Edward Hines, Jr. VA Hospital, Hines, IL (IRB 06-047). Outcome Measures Percent of agreement with CPG recommendations, and barriers and facilitators for implementing recommendations were the measured outcomes.
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Sample and Subject Selection The purposeful sample included 21 veterans and 32 interdisciplinary team members (subsequently referred to as providers) who delivered direct clinical care. Providers consisted of physicians, nurses, nurse practitioners, physician assistants, and rehabilitation staff. Three key informants consisted of a kinesiotherapist who specialized in wheelchair fitting and prescription, an experienced SCI clinical nurse specialist, and a prosthetist with expertise in issuing wheelchairs. No members of the CSCM were interviewed, although a member of the consortium, Dr. Audrey Nelson, was an investigator on the study. Veterans were either hospitalized or resided in the community, had a diagnosis of SCI of at least 1 year’s duration, and currently or recently used a manual wheelchair as the primary means for mobility. Exclusion criteria were veterans who had been injured for less than 1 year and veterans who predominantly used a power wheelchair. The principal investigator sent e-mails to clinical managers and supervisors at each site asking them to nominate veterans and providers who met inclusion criteria and would likely make significant contributions during focus groups. We asked members of the provider groups to identify key informants who had organizational, management, administrative, and fiscal knowledge of factors that would impede or facilitate CPG implementation. Minorities and women were sought in the recruitment process. Participants were not paid and no incentives were provided. Data Collection Procedures Focus groups were used to stimulate interaction among participants and generate discussion to identify salient barriers and facilitators in the complex healthcare environment and allow for identification of points of consensus and disagreement among study participants (Morgan & Krueger, 1993). Three focus groups were conducted for veterans and three were conducted for providers; each group consisted of six to eight participants. A trained facilitator and a cofacilitator conducted the focus groups using teleconferencing at Hines and Seattle SCI/D Centers, and on-site at the Tampa SCI/D Center. The facilitator used a standardized script to provide an overview of the study, explain the need for confidentiality, and discuss ground rules of focus group participation. The local site principal investigator obtained informed consent, including permission to audio-tape the discussion. Focus group questions were based on the PARiHS model to tap into
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perceptions about the strength of evidence and contextual influences of implementation, and questions used in other studies regarding evidence-based practice implementation (Luther, Nelson, & Powell-Cope, 2005; Goetz et al., 2005; Burns et al., 2005). A local on-site assistant coordinated the logistics of the focus groups and made handwritten notes to capture nonverbal communication and elements of group dynamics. After an icebreaker exercise, the facilitator used the scripted questions to guide discussions. Summary comments were written on flip chart paper so that these were easily viewed by study participants. The group was asked to agree on the three most troublesome gaps in implementing each recommendation. For these three gaps, participants were asked to: (1) identify all of the tasks required for the identified process of care, (2) describe how the tasks were performed at their VHAs, and (3) rate how well each task was performed. Participants were asked to identify the contextual and structural aspects of care that contributed to gaps in practice. The focus group facilitator used standard group process techniques to stimulate discussion such as generic prompts (e.g., “tell me more”), summarizing statements, asking for like and contrasting opinions, controlling “overtalkers,” and calling on people who minimally participated. For individual interviews with key informants, participants were mailed an informed consent before the interview. After the informed consent was returned, the interview was scheduled during a mutually convenient time. After the interviewer explained the study and confidentiality rules, the interview was conducted using similar procedures as the focus groups.
Data Management and Analytic Methods Safeguards during analysis were instituted by having experienced researchers interpret the transcribed audio recordings and ensure anonymity of the participants by removing names and references to specific individuals and facilities. A team of two PhD-level researchers with advanced qualitative methods training and experience analyzed qualitative data from all sites. Content analysis (Weber, 1985) was used to identify common themes and divergent perspectives across focus groups and interviews for each research objective. Themes were identified by breaking text into units of information and then thematically organizing units. Bias was minimized by analyzing data in four steps: (1) independent review of all data to
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Table 1 Provider agreement or disagreement with CPG recommendations Recommendations by Category Initial Assessment of Acute SCI 1. Educate healthcare providers and people with SCI about the risk of UL pain and injury, prevention, treatment options, and to maintain fitness. 2. Routinely assess the patient’s function, ergonomics, equipment, level of pain. Include evaluation of: (1) Transfer and wheelchair propulsion techniques, (2) Equipment (wheelchair and transfer device), and (3) Current health status. Ergonomics 3. Minimize the frequency of repetitive UL tasks. 4. Minimize the force required to complete UL tasks. 5. Minimize extreme or potentially injurious positions at all joints: (1) Avoid extreme positions of the wrist, (2) Avoid positioning the hand above the shoulder, and (3) Avoid potentially injurious or extreme positions at the shoulder, including extreme internal rotation and abduction. Equipment Selection, Training, and Environmental Adaptations 6. With high-risk patients, evaluate and discuss the pros and cons of changing to a power wheelchair system as a way to prevent repetitive injuries. 7. Provide manual wheelchair users with SCI a high-strength, fully customizable manual wheelchair made of the lightest possible material. 8. Adjust the rear axle as far forward as possible without compromising the stability of the user. 9. Position the rear axle so that when the hand is placed at the top dead-center position on the pushrim, the angle between the upper arm and forearm is between 100 and 120 degrees. 10. Educate the patient to: (1) Use long, smooth strokes that limit high impacts on the pushrim, and (2) Allow the hand to drift down naturally, keeping it below the pushrim when not in actual contact with that part of the wheelchair. 11. Promote an appropriate seated posture and stabilization relative to balance and stability needs. 12. For individuals with UL paralysis and/or pain, appropriately position the UL in bed and in a mobility device. The following principles should be followed: (1) Avoid direct pressure on the shoulder, (2) Provide support to the UL at all points, (3) When the individual is supine, position the upper limb in abduction and external rotation on a regular basis, (4) Avoid pulling on the arm when positioning individuals, and (5) Remember that preventing pain is a primary goal of positioning. 13. Provide seat elevation or possibly a standing position to individuals with SCI who use power wheelchairs and have arm function. 14. Complete a thorough assessment of the patient’s environment, obtain the appropriate equipment, and complete modifications to the home, ideally to Americans with Disabilities Act (ADA) standards. 15. Instruct individuals with SCI who complete independent transfers to: (1) Perform level transfers when possible, (2) Avoid positions of impingement when possible, (3) Avoid placing either hand on a flat surface when a handgrip is possible during transfers, and (4) Vary the technique used and the arm that leads. 16. Consider the use of a transfer-assist device for all individuals with SCI. Strongly encourage individuals with arm pain and/or UL weakness to use a transfer-assist device. Exercise 17. Incorporate flexibility exercises into an overall fitness program sufficient to maintain normal glenohumeral motion and pectoral muscle mobility.
Agreement*
Disagreement
2/2 (100%) √
0
√
3/3 (100%) √ √ √
0
2/11 (28%)
9/11 (82%) √
√ √ √
√
√+ √
√ √
√
√ 2/2 (100%) √
0
(continued)
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Table 1 (continued)
Recommendations by Category
Agreement*
18. Incorporate resistance training as an integral part of fitness program. Should be individualized and progressive, of sufficient intensity to enhance strength and muscular endurance, and provide stimulus to exercise all the major muscle groups to pain-free fatigue Management of Acute and Sub-acute UL Injuries and Pain 19. In general, manage musculoskeletal UL injuries in the SCI population in a similar fashion as in the unimpaired population. 20. Plan and provide intervention for acute pain as early as possible to prevent the development of chronic pain. 21. Consider a medical and rehabilitative approach to initial treatment in most instances of nontraumatic UL injury among individuals with SCI. 22. Because relative rest of an injured or postsurgical UL in SCI is difficult to achieve, strongly consider: (1) Use of resting night splints in carpal tunnel syndrome, (2) Home modifications or additional assistance, and (3) Admission to a medical facility if pain cannot be relieved or if complete rest is indicated. 23. Place special emphasis on maintaining optimal range of motion during rehabilitation from UL injury. 24. Consider alternative techniques for activities when UL pain or injury is present. 25. Emphasize that return to normal activity after an injury or surgery must occur gradually. 26. Closely monitor the results of treatment, if pain not relieved, continued work-ups and treatment as appropriate. 27. Consider surgery if the patient has chronic neuro-musculoskeletal pain and failed to regain functional capacity with medical and rehabilitative treatment and if the likelihood of a successful surgical and functional outcome outweighs the likelihood of an unsuccessful procedure. 28. Operate on UL fracture if indicated and when medically feasible. 29. Be aware of and plan for the recovery time needed after surgical procedures. 30. Assess the patient’s use of complementary and alternative medicine techniques and beware of possible negative interactions. Treatment of Chronic Musculoskeletal Pain to Maintain Function 31. Because chronic pain related to musculoskeletal disorders is a complex, multidimensional clinical problem, consider the use of an interdisciplinary approach to assessment and treatment planning. Begin treatment with careful assessment of the following: (1) Etiology, (2) Pain intensity, (3) Functional capacities, and (4) Psychosocial distress associated with the condition. 32. Treat chronic pain and associated symptomatology in an interdisciplinary fashion and incorporate multiple modalities based on the constellation of symptoms revealed by the comprehensive assessment. 33. Monitor outcomes regularly to maximize the likelihood of providing effective treatment. 34. Encourage manual wheelchair users with chronic UL pain to seriously consider use of a power wheelchair. 35. Monitor psychosocial adjustment to secondary UL injuries and provide treatment if necessary. Total
Disagreement
√
9/12 (75%)
3/12 (25%) √
√+ √+ √+
√+ √ √ √ √
√+ √+ √ 2/5 (40%) √+
3/5 (60%)
√
√
20/35 (57%)
√ √ √ 15/35 (43%)
*High levels of agreement denoted by √+.
assign codes reflecting basic meanings as expressed by participants, (2) joint comparison and combination of independently identified codes to form higher level categories and themes, (3) independent coding of data to
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categorize selections of text according to categories and themes, and (4) reconciliation of coding discrepancies through consensus. Sections of transcripts were marked to identify quotes that illustrated major codes.
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Results
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Table 2 Reasons for provider disagreement with CPG recommendations Clinical Practice Guideline Recommendation
Objective 1 Determine provider and patient agreement with CPG recommendations for preserving UL function. Provider agreement with recommendation categories ranged from 28% to 100% (Table 1). Providers expressed 100% agreement on three of the six CPG categories: (1) Initial Assessment of Acute SCI, (2) Ergonomics, and (3) Exercise. Providers commented that many of these recommendations were “common sense,” and “commonplace,” and that they performed these activities as a part of routine care. Providers expressed partial agreement on the other three categories: (4) Management of Acute and Subacute Upper Limb Injuries & Pain, (5) Treatment of Chronic Musculoskeletal Pain to Maintain Function, and (6) Equipment Selection, Training, & Environmental Adaptations. Providers agreed with 9 of the 12 recommendations in Management of Acute and Subacute Upper Limb Injuries and Pain including: (1) intervening early for acute pain, (2) adopting medical and rehabilitative approaches, (3) creatively seeking alternatives to relative rest, (4) preserving range of motion, (5) switching activities under conditions of patient injury, (6) gradually returning patients to activities following injury or surgery, (7) pursuing surgery as indicated for UL fractures, (8) planning ahead for postsurgery recovery time, and (9) assessing complementary and alternative medicines for possible drug–drug interactions. Quotes illustrated the high level of provider endorsement expressed relative to early intervention for acute and subacute pain. Representative quotes included: “There is great benefit in seeing patients with acute pain as early as possible.” “If you treat acute pain vigorously, it will prevent chronic pain later on.” Providers agreed with only two of the five recommendations in the Treatment of Chronic Musculoskeletal Pain to Maintain Function: (1) interdisciplinary patient assessment/care planning, and (2) treatment of acute pain. Representative quotes included: “An important facilitator is the team approach among staff with education and assessment, and discussion of the guideline principles in team meetings…. Patient care is always a team approach with the patient being part of the team; that’s how we handle it here.” “We have all disciplines in place to handle the treatment of acute pain. We don’t have an option to be
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•
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Lack of clinical evidence • Similarly manage UL injuries in the SCI • Continue work-ups for unrelieved pain • Consider surgery to treat chronic pain • Specific transfer techniques • Transfer-assist devices • Mobility devices for UL paralysis/pain • Wheelchair seat elevation • Power wheelchair to treat chronic pain
Unfeasibility • Assess/modify home environment • Monitor pain treatment outcomes • Monitor for psychiatric services referral
Category of CPG
Management of Acute/ Subacute Pain Equipment
Treatment of Chronic Musculoskeletal Pain Equipment Treatment of Chronic Musculoskeletal Pain
NonUniversal Applicability • Adjust the rear axle forward Equipment • Rear axle upper arm/forearm angle • Training in use of long, smooth strokes Generalized Resistance to Power Wheelchair Prescription • Power wheelchair for repetitive injuries Equipment
comfortable with pain—we have to be proactive! There is benefit in seeing patients with acute pain as early as possible. I keep harping on prevention—if you treat acute pain vigorously, it will prevent chronic pain later on.” “Pain is complex, and synthesized in the brain. Sometimes a patient has to accept some amount of pain—our focus is on function, ability to live with some amount of pain. Psychological services are easily available, but getting people to use it may not be so easy….” Interdisciplinary team members had the least agreement with recommendations in the equipment category (only 2 of 11): (1) issuance of high-quality wheelchairs, and (2) proper seating of patients in wheelchairs. Representative quotes included: “Seating, high level seating, is absolutely an art form.” “…you need to really custom-fit the wheelchair to the veteran’s unique dimensions or anatomical structure—how long he is from the back of his buttocks to where his knee bends, enough range of motion under the scapula. So the proper seating with the veteran’s bodily configuration…”
•
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Providers disagreed with eight recommendations based on a lack of clinical evidence, three based on infeasibility, three based on nonuniversal applicability in the population of veterans with SCI, and three based on a general resistance to prescribe powered wheelchairs (Table 2). Providers disagreed with 3 of the 12 recommendations in the Management of Acute and Subacute Upper Limb Injuries and Pain category: (1) manage UL injuries in the SCI population in a similar fashion as in the unimpaired population, (2) continue work-ups under conditions of unrelieved pain, and (3) consider surgery as a treatment for chronic pain. Based on focus group comments, disapproval stemmed from the lack of a clinical evidence base. Representative quotes included: “There’s no consensus, even in unimpaired populations, for the use of heat and cold modalities to treat musculoskeletal injuries…” “How often do 2nd and 3rd line treatments (for unresolved pain) work when your ‘best shot’ failed?” “Evidence is lacking about the practice of surgery (for chronic neuromusculoskeletal pain). There is little assurance of a positive outcome. In practice, surgery is typically avoided and used sparingly.” Providers disagreed with 3 of the 5 recommendations in the Treatment of Chronic Musculoskeletal Pain to Maintain Function category: (1) monitoring patients to assess pain treatment outcomes, (2) monitoring patients to assess needs for psychological services referral, and (3) prescribing power wheelchairs to treat chronic pain. Representative quotes included: “…we have so many veterans with pain that it would be too difficult to do interventions and it would be a full-time job—I don’t know how I could possibly do that…It’d be like having one person doing wound care in SCI—it’s impossible.” “How reliable is a brief depression screen (validated in the able-bodied population) in the setting of a disabled person who may already have significant issues?” “We have a fair amount of experience with power wheelchair prescriptions NOT improving chronic upper extremity, musculoskeletal pain.” One kinesiotherapist strongly disagreed with the recommendation on transitioning users from manual to power wheelchair as an intervention for pain: “We are getting individuals into power wheelchairs more and more, yet we are not addressing the cause of the pain.” This informant recommended a “graded approach,” that is, a series of seating assessments and manual wheelchair adjustments before prescribing a power wheelchair.
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•
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• A clinical nurse specialist strongly endorsed the need
for nurse training on UL pain management and increased use of an interdisciplinary approach for managing pain. However, this key informant acknowledged the challenges in scheduling interprofessional meetings that involve multiple disciplines who work across three shifts. Providers disagreed with 9 of the 11 recommendations in the Equipment category. Representative quotes included: “Transfer-assist devices encompass anything from a slide board to a mounted hydraulic arm. There is a potential of skin tears with sliding boards if not used correctly.” “My theory is that too many assistive devices disable patients. For a para, some chairs can be very appropriate. Some adjustments result in a ‘tippy’ chair to enable paras to jump over curbs; it stabilizes the chair when they’re going over a curb or moving forward to get that back wheel up… These chairs are inappropriate for quads, however, because, if the quad is going up a ramp in such a chair, they have to add antitippers on the back, and those are dragging on the back. So the bottom line there is individual variation. Not all wheelchair/axle adjustments are appropriate for all individuals at all times.” A prosthetist strongly disagreed with the recommendation for moving the rear wheelchair axle forward due to compromising stability of the chair. This informant stressed the need for practitioner adjustment of the recommendation on a case-by-case basis and considering patient, wheelchair, and environmental-specific factors. “It takes up a whole day’s worth of treatment to do one home visit, if I want to modify the home environment.” Regarding power wheelchair use for repetitive injuries, “We don’t necessarily encourage power chair use. It is not our thing. Basically, we do everything else first.” “The bottom line is that everyone is different and because of this, global recommendations are sometimes not applicable or inappropriate.”
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•
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Objective 2 Identify barriers and facilitators for implementing CPG recommendations. Veterans responded to our queries on barriers and facilitators to the CPG recommendations by recounting their personal experiences in general terms and not by focusing on each recommendation. Most barriers identified by veterans concerned administrative and system issues encountered during their clinical experience, © 2013 Association of Rehabilitation Nurses Rehabilitation Nursing 2015, 40, 100–110
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and were perceived as not amenable to change. For example, the challenge of obtaining a power wheelchair was discussed related to the lengthy process of application, high cost, and abundant paperwork required. Other barriers expressed by veterans included the design of the wheel-lock that catches when the veteran transfers from a vehicle to car and the strict criterion for obtaining inhome ceiling lifts. Veterans believed that some of the recommendations were not feasible from a daily function perspective. For instance, one veteran recounted that he used the trapeze for transfer when there was no caregiver at home to assist him. Changing old habits was also discussed—“I’ve been doing the same thing for 20 years and it’s so hard to change that.” Provider reasons for not complying with recommendations were grouped into four categories. First, provid-
Perceptions of Practice Guidelines
ers were concerned with the lack of clinical evidence for some of the recommendations. Second, other recommendations were described as not feasible depending on site of care and clinical resources. Third, some providers felt that recommendations related to equipment were difficult to implement because they believed that equipment should be customized based on patient preferences, functional ability, and clinical parameters. Finally, the use of power wheelchairs generated much discussion with some providers expressing concerns about the negative consequences of their use including the lack of arm and shoulder use that could lead to further reduced activity, increasing disability, weight gain, and long-term consequences of activity-related comorbid conditions such as diabetes, hypertension, and heart disease.
Table 3 Patient and provider suggestions to facilitate CPG implementation Education for Healthcare Providers • Engage in interprofessional team training that emphasizes a team approach • Discuss CPG recommendations during team meetings • Provide compensated time for staff education • Educate staff on new, emerging, evidence-based therapeutic practices • Train staff in interview techniques to trigger the proper consults to pain clinic, and psychological and other services • Develop specialized knowledge and skills among therapists for working with individuals with SCI Education for Patients and Family Members • Engage all team members in patient and family education • Allocate designated space for patient education • Adapt handouts and educational programs to grade school comprehension levels • Use peer educators for patient education • Use social marketing techniques to gain patient buy-in Acquisition and Distribution of Equipment • Provide leased power wheelchairs for trial use • Customize wheelchairs after the first year of use rather than immediately after the injury • Assemble a “therapy fleet” of reconditioned, reissued power chairs • Provide access to current technologies including alternating pressure mattresses, alternatives to the trapeze, power-assist chairs, transfer devices and boards, high-quality mats, and other adaptive equipment (e.g., scoop dishes, special utensils, “reachers”) • Use devices that monitor hand-to-rim location, duration, force, and grasp, to train individuals on executing proper wheelchair strokes • Use pressure monitoring technology to provide real-time feedback to patients and providers Programs and Clinics • Evidence-based weight loss programs for individuals with SCI • Patient, family, and caregiver interdisciplinary wheelchair clinics for training, wheelchair repairs, specialized seating services • Telehealth to increase access to services • Hospital-based wellness centers • Partnerships with researchers to strengthen evidence for recommendations Implementation Tools • Reference list of available complementary and alternative treatments such as acupuncture • Index of commonly used alternative medications and interactions with Western medications • Standardized patient education materials for wheelchair skills, e.g., transfer techniques
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Objective 3
Discussion
Identify recommendations for improving implementation. Patients and providers suggested ways to facilitate CPG implementation that were grouped into five categories: (1) Education for Healthcare Providers, (2) Education for Patients and Family Members, (3) Acquisition and Distribution of Equipment; (4) Programs and Clinics, and (5) Implementation Tools (Table 3). Education of providers and veterans was the most commonly recommended strategy. Respondents emphasized the importance of ongoing interprofessional training, ongoing education for veterans and family members using creative approaches such as social marketing and peer educators, and opportunities for therapists and others to develop expertise in the care of people with SCI, particularly in the area of wheelchair seating evaluation and prescription. Respondents wanted more options for obtaining power wheelchairs and customized wheelchairs (including reconditioned chairs), the latest technologies in adaptive equipment (including mattresses, power-assist chair, transfer devices), and continuous pressure monitoring technologies that could provide real-time feedback to patients and providers. Programs and specialized clinics were suggested to improve access to wheelchair-related services but few specific implementation tools were identified. Representative quotes included: “Once again, we’re going to train them in the best possible techniques for moving and transferring that we can. We’re going to train from the very beginning to use really good transfer techniques—ones that are functional. We start education in initial rehab and hope that with constant education, people will incorporate it. We try to educate patients about over usage and make them understand what joints, nerves, muscles are at risk—education is an ongoing battle, people get set in their ways…” “It comes down to education for nurses, patients and caregivers on proper moving techniques. Ceiling lifts have reduced injuries among patients and have been a great benefit to nursing care! Related knowledge is a big part of nursing education and is important for caregiver training as well…” “We have to be constantly evaluating equipment changes as people age. Making patients understand the importance of proper equipment is central…” “A facilitator for equipment use would be more power-assist wheelchairs, better transfer devices and more teaching on adjusting the chair and pushing the chair to avoid injury.
A large proportion of people with SCI report debilitating UL pain. By identifying barriers and facilitators for CPG implementation, gap identification can inform future research to enhance provider adherence to the recommendations thus improving function, decreasing UL pain, and improving quality of life for patients. Patient and provider suggestions from the study could be used to enhance implementation of the CPG in 24 VHA SCI/D Centers and private-sector facilities. Specifically, findings may be used to: Focus on three areas for immediate implementation of CPG recommendations with strong healthcare provider agreement: flexibility exercises, early intervention for pain, planning ahead for postsurgery recovery time. Develop a research agenda to strengthen the evidence base for recommendations in the areas of health promotion, wellness, and exercise. Capitalize on the importance of teamwork in SCI to implement key recommendations and overcome barriers. Capitalize on skills and knowledge of opinion leaders such as physical and kinesiotherapist, clinical nurse specialists, and prosthetists to provide leadership for revising CPG (e.g., wheelchair selection). Review existing and develop new implementation tools to facilitate guideline implementation. The disparities were apparent between the veteran’s perceptions of what was needed and service-delivery constraints. For example, one veteran stressed the importance of an in-home evaluation because he believed that part of the genesis of his pain was his in-home routine; that may be a potential barrier as some VHAs may be more attuned to doing in-home evaluations than others. Another veteran stressed the importance of being able to work mechanically on his own chair. Doing so gave him a feeling of confidence; however, staff may advise veterans not to repair their wheelchairs. Interestingly, some of the barriers to CPG implementation were self-imposed, such as “macho attitudes” that reflect cultural barriers against carrying around a transfer board. Power wheelchairs were viewed as a symbol of “breaking down and getting old” whereas manual wheelchairs were viewed as symbols of independence.
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Limitations Limitations to this analysis included: (1) It did not distinguish between barriers and facilitators linked with imple-
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menting UL CPG in institutionalized settings compared to noninstitutionalized settings, (2) Methodology did not allow for analysis of the interaction among factors that affect UL functioning (e.g., assistive equipment such as patient lift device vs. transfer board, comorbidities), (3) Perceptions of facilitators and barriers for implementation did not include family or paid caregivers, and (4) Analysis was not stratified by level of injury (e.g., tetraplegic vs. paraplegic) or extent of injury (e.g., complete vs. incomplete). Furthermore, data disparities could have resulted by data collection method, that is, in-person focus groups in Tampa versus telephone focus groups in the Seattle and Hines SCI Centers.
Perceptions of Practice Guidelines
Key Practice Points Patient and provider suggestions from the study could be used to enhance implementation of the CPG in SCI Centers. Providers and patients agreed with many elements of the UL CPG. When providers and patients disagreed with CPG recommendations, it was related to either lack of evidence or the impracticality of implementing the recommendation. A consistent interdisciplinary team is necessary to facilitate coordination and communication across services in CPG implementation.
Conclusions
Acknowledgments
CPGs are valuable in that they synthesize empirical and clinical evidence—a standardized format to guide clinical practice. However, effective implementation of recommendations requires a concerted effort including identifying and reducing barriers, and supporting facilitators. Providers and patients agreed with many elements of the UL CPG. When they disagreed, it was related to either lack of evidence or the impracticality of implementing the recommendation. We concluded that several themes regarding facilitators and barriers to CPG implementation were consistent among veterans, providers, and key informants. These were: 1. Variations in veteran’s characteristics rendered implementation of certain CPG unfeasible for all veterans all of the time (e.g., age, height, weight, strength, level and duration of injury, economic, educational and caregiver status), 2. Issues within the VHA health care system, that if addressed, could hasten implementation of recommendations (e.g., dedicating space for staff; patient and family education; streamlining cumbersome processes and paperwork; using telemedicine technologies for treating patients who live at a distance from the healthcare facilities; providing increased staff education, equipment, and other resources), 3. A consistent interdisciplinary team could facilitate coordination and communication across services in CPG implementation, 4. An evidence base that includes few randomized controlled trials necessitates strong clinical judgment in applying guideline recommendations, and 5. Special and innovative clinical techniques, programs, approaches, product development, and devices could support implementation of recommendations.
The authors wish to acknowledge Audrey L. Nelson, PhD, RN, FAAN, Retired Director, HSR&D/RR&D Center of Excellence, who with Dr. Weaver, conceptualized the study and provided leadership for conduct of the research. We also appreciate the contributions of Barry Goldstein, MD, PhD, Co-Investigator, Deputy Chief Consultant for the Strategic Healthcare Group for Spinal Cord Injury in Seattle, Clinical Co-coordinator of the SCI-QUERI, and Professor of Rehabilitation Medicine at the University of Washington; Scott Miskevics, QUERI Programmer; and Mary Reeder, transcriptionist.
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Disclaimer This material is based upon work supported by the Office of Research and Development, Health Services R&D Service, Department of Veterans Affairs (RRP 06-151). The views expressed in this article are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs.
References Beekhuizen, K.S. (2005). New perspectives on improving upper extremity function after spinal cord injury. Journal of Neurologic Physical Therapy, 29(3), 157–162. Burns, S.P., Nelson, A.L., Bosshart, H.T., Goetz, L.L., Harrow, J.J., Gerhard, K.D., et al. (2005). Implementation of clinical practice guidelines for prevention of thromboembolism in spinal cord injury. Journal of Spinal Cord Medicine, 28(1), 33–42. Consortium for Spinal Cord Medicine Clinical Practice Guidelines (CSCM). (2005). Preservation of Upper Limb Function Following Spinal Cord Injury: A Clinical Practice
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Guideline for Health-Care Professionals. Washington, DC: Paralyzed Veterans of America. Dalyan, M., Cardenas, D.D., & Gerard, B. (1999). Upper extremity pain after spinal cord injury. Spinal Cord, 37, 191–195. Goetz, L.L., Nelson, A.L., Guihan, M., Bosshart, H.T., Harrow, J.J., Gerhart, D.K., et al. (2005). Provider adherence to implementation of clinical practice guidelines for neurogenic bowel in adults with spinal cord injury. Journal of Spinal Cord Injury Medicine, 28(5), 394–406. Kitson, A., Harvey, G., & McCormack, B. (1998). Enabling the implementation of evidence-based practice: A conceptual framework. Quality in Health Care, 7, 149–158. Kitson, A.L., Rycroft-Malone, J., Harvey, G., McCormack, B., Seers, K., & Titchen, A. (2008). Evaluating the successful implementation of evidence into practice using the PARiHS framework: Theoretical and practical challenges. Implementation Science, 3, 1–12. Retrieved October 24, 2013, from http://www.implementationscience. com/content/3/1/1 Luther, S.L., Nelson, A.L., & Powell-Cope, G. (2005). Provider attitudes and beliefs about clinical practice guidelines. SCI Nursing, 21(4), 206–212. Morgan, D.L., & Krueger, R.A. (1993). When to use focus groups and why. In: D.L. Morgan, (Ed.), Successful focus groups (pp. 3–19). Newbury Park, CA: Sage. National Spinal Cord Injury Statistical Center. (2012). 2012 Annual Statistical Report, Model Systems. University of Alabama at Birmingham. Retrieved May 10, 2012, from https://www.nscisc.uab.edu/reports.aspx National Spinal Cord Injury Statistical Center (2013). Spinal Cord Injury Facts and Figures at a Glance. Retrieved October 24, 2013, from https://www.nscisc.uab.edu/ PublicDocuments/fact_figures_docs/Facts%202013.pdf Nyland, J., Quigley, P., Huang, C., Lloyd, J., & Nelson, A.L. (2000). Preserving transfer independence among individuals with spinal cord injury. Journal of Spinal Cord Medicine, 38 (11), 639–657. Rintala, D.H., Holmes, S.A., Fiess, R.N., Courtade, D., & Loubser, P.G. (2005). Prevalence and characteristics of chronic pain in patients with spinal cord injury. Journal of Rehabilitation Research and Development, 42(5), 573–584.
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Rycroft-Malone, J. (2004). The PARiHS framework—a framework for guiding the implementation of evidencebased practice. Journal of Nursing Care Quality, 19(4), 297– 304. Sarhan, F., Saif, D., & Saif, A. (2012). An overview of traumatic spinal cord injury: Part 1. aetiology and pathophysiology. British Journal of Neuroscience Nursing, 8(6), 319–325. Schaffer, M.A., Sandau, K.E., & Diedrick, L. (2013). Evidencebased practice models for organizational change: Overview and practical applications. Journal of Advanced Nursing., 5, 1197–1209. Spinal Cord Injury QUERI Center. (2009). Department of Veterans Affairs Strategic Plan, 2009. Retrieved May 20, 2009, from http://www.queri.research.va.gov/about/ strategicRplans/sci-strategic-plan.pdf Ullrich, P.M., Jense, M.P., Loeser, J.D., Cardenas, D.D., & Weaver, F.M. (2008). Pain among veterans with spinal cord injury. Journal of Rehabilitation Research and Development, 45(6), 793–800. Weber, R. (1985). Basic Content Analysis. Beverly Hills, CA: Sage.
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Perceptions of Practice Guidelines for People with Spinal Cord Injury
Gail Powell-Cope1, PhD, ARNP, FAAN, D. Helen Moore1, PhD, BSW, Frances M. Weaver2, PhD & Susan Thomason3, MN, RN, ACNS-BC, CRRN, CWN 1 Center of Innovation on Disability and Rehabilitation Research VISN 8, Department of Veterans Affairs (VA), Veterans Health Administration, Tampa, FL, USA 2 HSR&D Center of Innovation, Hines VA Hospital and Stritch School of Medicine, Loyola University, Chicago, IL, USA 3 Tampa VA Research and Education Foundation, Tampa, FL, USA
Keywords
Abstract
Upper limb; clinical practice guideline; spinal cord injuries. Correspondence Gail Powell-Cope, Tampa Co-Director, Center of Innovation on Disability and Rehabilitation Research VISN 8, Department of Veterans Affairs, 8900 Grand Oak Circle, Tampa, FL. E-mail: [email protected] Accepted September 15, 2013. doi: 10.1002/rnj.134
Purpose: The Consortium for Spinal Cord Medicine published clinical practice guidelines (CPG) related to upper limb (UL) preservation in people with spinal cord injury (SCI) in 2005. The purpose of this qualitative research was to identify stakeholder agreement with recommendations, performance gaps, and barriers and facilitators to CPG implementation. Design: This 6-month study focused on the perspectives of healthcare providers, veterans, and key informants. The Promoting Action on Research Implementation in Health Services (PARiHS) was used to frame the interview questions, analyze data from focus groups and interviews, and develop conclusions and recommendations. Method: SCI Centers at the Tampa, Seattle, and Hines Veterans’ hospitals participated. The purposeful sample for the focus groups included 32 healthcare providers, 21 veterans with SCI, and 3 key informants. Analysis of qualitative data netted the percent of agreement with recommendations, performance gaps, and strategies for CPG implementation. Findings: Content analysis of focus group data revealed that healthcare providers agreed or partially agreed with 20 (57%) of the 35 CSCM CPG on UL preservation of function. Agreement ranged from 100% for assessment to 28% for equipment use. Barriers for implementation related to administrative and system issues. Conclusion: Consideration of gaps, barriers, and facilitators to implementation will assist clinicians to target interventions to preserve UL function.
Introduction A spinal cord injury (SCI) is damage to the sensory, motor, or autonomic nerves that are protected by the spinal vertebrae (Sarhan, Saif, & Saif, 2012). Spinal cord injury can result in varying degrees of functional impairment depending on injury location and severity. The
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Consortium for Spinal Cord Medicine (CSCM) published several evidence-based clinical practice guidelines (CPG) to address common issues that are SCI-related. The CSCM, formed in 1995 and sponsored by the Paralyzed Veterans of America, consists of 22 healthcare professional, payer, and consumer organizations whose mission is to advance the care of people with SCI © 2013 Association of Rehabilitation Nurses Rehabilitation Nursing 2015, 40, 100–110
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through the development and dissemination of evidencebased CPGs. The CPGs of the CSCM are considered best practices for the care of people with SCI and are used internationally by rehabilitation specialists and organizations. Translating evidence into practice for preserving limb functioning is a priority for the Veterans’ Health Administration (VHA) and SCI Quality Enhancement Research Initiative (QUERI) (Spinal Cord Injury QUERI Center, 2009). It is also a concern for SCI Model Systems in the private sector (Dalyan, Cardenas, & Gerard, 1999; National Spinal Cord Injury Statistical Center [NSCISC], 2012). In 2005, the CSCM published a CPG on the preservation of upper limb (UL) function following SCI that contained 35 recommendations (CSCM, 2005). Each recommendation was graded on the strength of evidence and was meant to be practical to implement. Most people with SCI have increased biomechanical challenges and use their ULs to compensate for loss of lower limb function (CSCM, 2005). People use ULs to propel wheelchairs, perform pressure reliefs to avoid pressure ulcers, transfer to and from the bed, shower trolley, and toilet, and perform other weight-bearing tasks. Individuals tend to report more UL pain during pressure relief, transfers, and mobility than other activities (Dalyan et al., 1999). People with SCI frequently have shoulder overuse over the years which is likely to result in pain, decreased shoulder function, and compromised community participation (Beekhuizen, 2005; NSCISC, 2012; Nyland, Quigley, Huang, Lloyd, & Nelson, 2000; Rintala, Holmes, Fiess, Courtade, & Loubser, 2005; Ullrich, Jense, Loeser, Cardenas, & Weaver, 2008). Upper limb overuse injuries and dysfunction are expected to increase across the SCI population as life expectancy increases for people with SCI (NSCISC, 2013). The Promoting Action on Research Implementation in Health Services (PARiHS) model, a conceptual framework that evaluates the likely success of translation of research into practice, provided the conceptual framework for this study (Rycroft-Malone, 2004; Schaffer, Sandau, & Diedrick, 2013). According to this model, a successful implementation of research into practice is a function of the interplay of three core elements: (1) the level and nature of the evidence to be used (e.g., research evidence, clinical experience, patient experience), (2) the context or environment in which the research is to be placed (e.g., cultural, leadership, evaluation), and (3) the method by which the research implementation process is to be facilitated (e.g., opinion leaders, facilitators) (Kitson, Harvey, & McCormack, 1998; Kitson et al., 2008). The PARiHS © 2013 Association of Rehabilitation Nurses Rehabilitation Nursing 2015, 40, 100–110
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model positions each of the foregoing elements on a lowto-high continuum, and predicts successful research implementation under conditions of uniformly high placement of the elements on the continuum. In lieu of others, the research team chose the PARiHS model to set up the study given that the model’s specific focus is on the contextual determinants of knowledge translation success or failure. The content of the interview questions, data analysis, and interpretation process reflected the contextual focus of the conceptual model chosen and perceptions of evidence underlying the CPG recommendation. Given the high prevalence of UL pain and dysfunction in people with SCI, and the evidence-based CPG that was developed by the CSCM, objectives of this descriptive study were to: (1) determine provider and patient agreement with CPG recommendations for preserving UL function, (2) identify barriers and facilitators for implementing CPG recommendations, and (3) identify recommendations for improving implementation. Questions were: (1) What are the gaps in performance associated with routine assessment, prevention, and treatment of UL pain and function for people with SCI? (2) What are the barriers and facilitators for routine assessment, prevention, and treatment of UL pain and function for people with SCI? (3) Given perceptions of barriers and facilitators, what actions would improve implementation of CPG recommendations? Methods Setting The study was conducted in three VHA Spinal Cord Injury/Disorders (SCI/D) Centers in Tampa, Hines (Chicago), and Seattle. Study Design This 6-month descriptive study addressed research questions from three perspectives: veterans with SCI, health-care providers, and key informants. The study received IRB approval from the University of South Florida, Tampa, FL (IRB 104600); University of Washington, Seattle, WA (IRB 06-1386-V/E); and Edward Hines, Jr. VA Hospital, Hines, IL (IRB 06-047). Outcome Measures Percent of agreement with CPG recommendations, and barriers and facilitators for implementing recommendations were the measured outcomes.
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Sample and Subject Selection The purposeful sample included 21 veterans and 32 interdisciplinary team members (subsequently referred to as providers) who delivered direct clinical care. Providers consisted of physicians, nurses, nurse practitioners, physician assistants, and rehabilitation staff. Three key informants consisted of a kinesiotherapist who specialized in wheelchair fitting and prescription, an experienced SCI clinical nurse specialist, and a prosthetist with expertise in issuing wheelchairs. No members of the CSCM were interviewed, although a member of the consortium, Dr. Audrey Nelson, was an investigator on the study. Veterans were either hospitalized or resided in the community, had a diagnosis of SCI of at least 1 year’s duration, and currently or recently used a manual wheelchair as the primary means for mobility. Exclusion criteria were veterans who had been injured for less than 1 year and veterans who predominantly used a power wheelchair. The principal investigator sent e-mails to clinical managers and supervisors at each site asking them to nominate veterans and providers who met inclusion criteria and would likely make significant contributions during focus groups. We asked members of the provider groups to identify key informants who had organizational, management, administrative, and fiscal knowledge of factors that would impede or facilitate CPG implementation. Minorities and women were sought in the recruitment process. Participants were not paid and no incentives were provided. Data Collection Procedures Focus groups were used to stimulate interaction among participants and generate discussion to identify salient barriers and facilitators in the complex healthcare environment and allow for identification of points of consensus and disagreement among study participants (Morgan & Krueger, 1993). Three focus groups were conducted for veterans and three were conducted for providers; each group consisted of six to eight participants. A trained facilitator and a cofacilitator conducted the focus groups using teleconferencing at Hines and Seattle SCI/D Centers, and on-site at the Tampa SCI/D Center. The facilitator used a standardized script to provide an overview of the study, explain the need for confidentiality, and discuss ground rules of focus group participation. The local site principal investigator obtained informed consent, including permission to audio-tape the discussion. Focus group questions were based on the PARiHS model to tap into
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perceptions about the strength of evidence and contextual influences of implementation, and questions used in other studies regarding evidence-based practice implementation (Luther, Nelson, & Powell-Cope, 2005; Goetz et al., 2005; Burns et al., 2005). A local on-site assistant coordinated the logistics of the focus groups and made handwritten notes to capture nonverbal communication and elements of group dynamics. After an icebreaker exercise, the facilitator used the scripted questions to guide discussions. Summary comments were written on flip chart paper so that these were easily viewed by study participants. The group was asked to agree on the three most troublesome gaps in implementing each recommendation. For these three gaps, participants were asked to: (1) identify all of the tasks required for the identified process of care, (2) describe how the tasks were performed at their VHAs, and (3) rate how well each task was performed. Participants were asked to identify the contextual and structural aspects of care that contributed to gaps in practice. The focus group facilitator used standard group process techniques to stimulate discussion such as generic prompts (e.g., “tell me more”), summarizing statements, asking for like and contrasting opinions, controlling “overtalkers,” and calling on people who minimally participated. For individual interviews with key informants, participants were mailed an informed consent before the interview. After the informed consent was returned, the interview was scheduled during a mutually convenient time. After the interviewer explained the study and confidentiality rules, the interview was conducted using similar procedures as the focus groups.
Data Management and Analytic Methods Safeguards during analysis were instituted by having experienced researchers interpret the transcribed audio recordings and ensure anonymity of the participants by removing names and references to specific individuals and facilities. A team of two PhD-level researchers with advanced qualitative methods training and experience analyzed qualitative data from all sites. Content analysis (Weber, 1985) was used to identify common themes and divergent perspectives across focus groups and interviews for each research objective. Themes were identified by breaking text into units of information and then thematically organizing units. Bias was minimized by analyzing data in four steps: (1) independent review of all data to
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Table 1 Provider agreement or disagreement with CPG recommendations Recommendations by Category Initial Assessment of Acute SCI 1. Educate healthcare providers and people with SCI about the risk of UL pain and injury, prevention, treatment options, and to maintain fitness. 2. Routinely assess the patient’s function, ergonomics, equipment, level of pain. Include evaluation of: (1) Transfer and wheelchair propulsion techniques, (2) Equipment (wheelchair and transfer device), and (3) Current health status. Ergonomics 3. Minimize the frequency of repetitive UL tasks. 4. Minimize the force required to complete UL tasks. 5. Minimize extreme or potentially injurious positions at all joints: (1) Avoid extreme positions of the wrist, (2) Avoid positioning the hand above the shoulder, and (3) Avoid potentially injurious or extreme positions at the shoulder, including extreme internal rotation and abduction. Equipment Selection, Training, and Environmental Adaptations 6. With high-risk patients, evaluate and discuss the pros and cons of changing to a power wheelchair system as a way to prevent repetitive injuries. 7. Provide manual wheelchair users with SCI a high-strength, fully customizable manual wheelchair made of the lightest possible material. 8. Adjust the rear axle as far forward as possible without compromising the stability of the user. 9. Position the rear axle so that when the hand is placed at the top dead-center position on the pushrim, the angle between the upper arm and forearm is between 100 and 120 degrees. 10. Educate the patient to: (1) Use long, smooth strokes that limit high impacts on the pushrim, and (2) Allow the hand to drift down naturally, keeping it below the pushrim when not in actual contact with that part of the wheelchair. 11. Promote an appropriate seated posture and stabilization relative to balance and stability needs. 12. For individuals with UL paralysis and/or pain, appropriately position the UL in bed and in a mobility device. The following principles should be followed: (1) Avoid direct pressure on the shoulder, (2) Provide support to the UL at all points, (3) When the individual is supine, position the upper limb in abduction and external rotation on a regular basis, (4) Avoid pulling on the arm when positioning individuals, and (5) Remember that preventing pain is a primary goal of positioning. 13. Provide seat elevation or possibly a standing position to individuals with SCI who use power wheelchairs and have arm function. 14. Complete a thorough assessment of the patient’s environment, obtain the appropriate equipment, and complete modifications to the home, ideally to Americans with Disabilities Act (ADA) standards. 15. Instruct individuals with SCI who complete independent transfers to: (1) Perform level transfers when possible, (2) Avoid positions of impingement when possible, (3) Avoid placing either hand on a flat surface when a handgrip is possible during transfers, and (4) Vary the technique used and the arm that leads. 16. Consider the use of a transfer-assist device for all individuals with SCI. Strongly encourage individuals with arm pain and/or UL weakness to use a transfer-assist device. Exercise 17. Incorporate flexibility exercises into an overall fitness program sufficient to maintain normal glenohumeral motion and pectoral muscle mobility.
Agreement*
Disagreement
2/2 (100%) √
0
√
3/3 (100%) √ √ √
0
2/11 (28%)
9/11 (82%) √
√ √ √
√
√+ √
√ √
√
√ 2/2 (100%) √
0
(continued)
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Table 1 (continued)
Recommendations by Category
Agreement*
18. Incorporate resistance training as an integral part of fitness program. Should be individualized and progressive, of sufficient intensity to enhance strength and muscular endurance, and provide stimulus to exercise all the major muscle groups to pain-free fatigue Management of Acute and Sub-acute UL Injuries and Pain 19. In general, manage musculoskeletal UL injuries in the SCI population in a similar fashion as in the unimpaired population. 20. Plan and provide intervention for acute pain as early as possible to prevent the development of chronic pain. 21. Consider a medical and rehabilitative approach to initial treatment in most instances of nontraumatic UL injury among individuals with SCI. 22. Because relative rest of an injured or postsurgical UL in SCI is difficult to achieve, strongly consider: (1) Use of resting night splints in carpal tunnel syndrome, (2) Home modifications or additional assistance, and (3) Admission to a medical facility if pain cannot be relieved or if complete rest is indicated. 23. Place special emphasis on maintaining optimal range of motion during rehabilitation from UL injury. 24. Consider alternative techniques for activities when UL pain or injury is present. 25. Emphasize that return to normal activity after an injury or surgery must occur gradually. 26. Closely monitor the results of treatment, if pain not relieved, continued work-ups and treatment as appropriate. 27. Consider surgery if the patient has chronic neuro-musculoskeletal pain and failed to regain functional capacity with medical and rehabilitative treatment and if the likelihood of a successful surgical and functional outcome outweighs the likelihood of an unsuccessful procedure. 28. Operate on UL fracture if indicated and when medically feasible. 29. Be aware of and plan for the recovery time needed after surgical procedures. 30. Assess the patient’s use of complementary and alternative medicine techniques and beware of possible negative interactions. Treatment of Chronic Musculoskeletal Pain to Maintain Function 31. Because chronic pain related to musculoskeletal disorders is a complex, multidimensional clinical problem, consider the use of an interdisciplinary approach to assessment and treatment planning. Begin treatment with careful assessment of the following: (1) Etiology, (2) Pain intensity, (3) Functional capacities, and (4) Psychosocial distress associated with the condition. 32. Treat chronic pain and associated symptomatology in an interdisciplinary fashion and incorporate multiple modalities based on the constellation of symptoms revealed by the comprehensive assessment. 33. Monitor outcomes regularly to maximize the likelihood of providing effective treatment. 34. Encourage manual wheelchair users with chronic UL pain to seriously consider use of a power wheelchair. 35. Monitor psychosocial adjustment to secondary UL injuries and provide treatment if necessary. Total
Disagreement
√
9/12 (75%)
3/12 (25%) √
√+ √+ √+
√+ √ √ √ √
√+ √+ √ 2/5 (40%) √+
3/5 (60%)
√
√
20/35 (57%)
√ √ √ 15/35 (43%)
*High levels of agreement denoted by √+.
assign codes reflecting basic meanings as expressed by participants, (2) joint comparison and combination of independently identified codes to form higher level categories and themes, (3) independent coding of data to
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categorize selections of text according to categories and themes, and (4) reconciliation of coding discrepancies through consensus. Sections of transcripts were marked to identify quotes that illustrated major codes.
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Results
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Table 2 Reasons for provider disagreement with CPG recommendations Clinical Practice Guideline Recommendation
Objective 1 Determine provider and patient agreement with CPG recommendations for preserving UL function. Provider agreement with recommendation categories ranged from 28% to 100% (Table 1). Providers expressed 100% agreement on three of the six CPG categories: (1) Initial Assessment of Acute SCI, (2) Ergonomics, and (3) Exercise. Providers commented that many of these recommendations were “common sense,” and “commonplace,” and that they performed these activities as a part of routine care. Providers expressed partial agreement on the other three categories: (4) Management of Acute and Subacute Upper Limb Injuries & Pain, (5) Treatment of Chronic Musculoskeletal Pain to Maintain Function, and (6) Equipment Selection, Training, & Environmental Adaptations. Providers agreed with 9 of the 12 recommendations in Management of Acute and Subacute Upper Limb Injuries and Pain including: (1) intervening early for acute pain, (2) adopting medical and rehabilitative approaches, (3) creatively seeking alternatives to relative rest, (4) preserving range of motion, (5) switching activities under conditions of patient injury, (6) gradually returning patients to activities following injury or surgery, (7) pursuing surgery as indicated for UL fractures, (8) planning ahead for postsurgery recovery time, and (9) assessing complementary and alternative medicines for possible drug–drug interactions. Quotes illustrated the high level of provider endorsement expressed relative to early intervention for acute and subacute pain. Representative quotes included: “There is great benefit in seeing patients with acute pain as early as possible.” “If you treat acute pain vigorously, it will prevent chronic pain later on.” Providers agreed with only two of the five recommendations in the Treatment of Chronic Musculoskeletal Pain to Maintain Function: (1) interdisciplinary patient assessment/care planning, and (2) treatment of acute pain. Representative quotes included: “An important facilitator is the team approach among staff with education and assessment, and discussion of the guideline principles in team meetings…. Patient care is always a team approach with the patient being part of the team; that’s how we handle it here.” “We have all disciplines in place to handle the treatment of acute pain. We don’t have an option to be
• •
•
•
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Lack of clinical evidence • Similarly manage UL injuries in the SCI • Continue work-ups for unrelieved pain • Consider surgery to treat chronic pain • Specific transfer techniques • Transfer-assist devices • Mobility devices for UL paralysis/pain • Wheelchair seat elevation • Power wheelchair to treat chronic pain
Unfeasibility • Assess/modify home environment • Monitor pain treatment outcomes • Monitor for psychiatric services referral
Category of CPG
Management of Acute/ Subacute Pain Equipment
Treatment of Chronic Musculoskeletal Pain Equipment Treatment of Chronic Musculoskeletal Pain
NonUniversal Applicability • Adjust the rear axle forward Equipment • Rear axle upper arm/forearm angle • Training in use of long, smooth strokes Generalized Resistance to Power Wheelchair Prescription • Power wheelchair for repetitive injuries Equipment
comfortable with pain—we have to be proactive! There is benefit in seeing patients with acute pain as early as possible. I keep harping on prevention—if you treat acute pain vigorously, it will prevent chronic pain later on.” “Pain is complex, and synthesized in the brain. Sometimes a patient has to accept some amount of pain—our focus is on function, ability to live with some amount of pain. Psychological services are easily available, but getting people to use it may not be so easy….” Interdisciplinary team members had the least agreement with recommendations in the equipment category (only 2 of 11): (1) issuance of high-quality wheelchairs, and (2) proper seating of patients in wheelchairs. Representative quotes included: “Seating, high level seating, is absolutely an art form.” “…you need to really custom-fit the wheelchair to the veteran’s unique dimensions or anatomical structure—how long he is from the back of his buttocks to where his knee bends, enough range of motion under the scapula. So the proper seating with the veteran’s bodily configuration…”
•
• •
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Providers disagreed with eight recommendations based on a lack of clinical evidence, three based on infeasibility, three based on nonuniversal applicability in the population of veterans with SCI, and three based on a general resistance to prescribe powered wheelchairs (Table 2). Providers disagreed with 3 of the 12 recommendations in the Management of Acute and Subacute Upper Limb Injuries and Pain category: (1) manage UL injuries in the SCI population in a similar fashion as in the unimpaired population, (2) continue work-ups under conditions of unrelieved pain, and (3) consider surgery as a treatment for chronic pain. Based on focus group comments, disapproval stemmed from the lack of a clinical evidence base. Representative quotes included: “There’s no consensus, even in unimpaired populations, for the use of heat and cold modalities to treat musculoskeletal injuries…” “How often do 2nd and 3rd line treatments (for unresolved pain) work when your ‘best shot’ failed?” “Evidence is lacking about the practice of surgery (for chronic neuromusculoskeletal pain). There is little assurance of a positive outcome. In practice, surgery is typically avoided and used sparingly.” Providers disagreed with 3 of the 5 recommendations in the Treatment of Chronic Musculoskeletal Pain to Maintain Function category: (1) monitoring patients to assess pain treatment outcomes, (2) monitoring patients to assess needs for psychological services referral, and (3) prescribing power wheelchairs to treat chronic pain. Representative quotes included: “…we have so many veterans with pain that it would be too difficult to do interventions and it would be a full-time job—I don’t know how I could possibly do that…It’d be like having one person doing wound care in SCI—it’s impossible.” “How reliable is a brief depression screen (validated in the able-bodied population) in the setting of a disabled person who may already have significant issues?” “We have a fair amount of experience with power wheelchair prescriptions NOT improving chronic upper extremity, musculoskeletal pain.” One kinesiotherapist strongly disagreed with the recommendation on transitioning users from manual to power wheelchair as an intervention for pain: “We are getting individuals into power wheelchairs more and more, yet we are not addressing the cause of the pain.” This informant recommended a “graded approach,” that is, a series of seating assessments and manual wheelchair adjustments before prescribing a power wheelchair.
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•
• • •
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• A clinical nurse specialist strongly endorsed the need
for nurse training on UL pain management and increased use of an interdisciplinary approach for managing pain. However, this key informant acknowledged the challenges in scheduling interprofessional meetings that involve multiple disciplines who work across three shifts. Providers disagreed with 9 of the 11 recommendations in the Equipment category. Representative quotes included: “Transfer-assist devices encompass anything from a slide board to a mounted hydraulic arm. There is a potential of skin tears with sliding boards if not used correctly.” “My theory is that too many assistive devices disable patients. For a para, some chairs can be very appropriate. Some adjustments result in a ‘tippy’ chair to enable paras to jump over curbs; it stabilizes the chair when they’re going over a curb or moving forward to get that back wheel up… These chairs are inappropriate for quads, however, because, if the quad is going up a ramp in such a chair, they have to add antitippers on the back, and those are dragging on the back. So the bottom line there is individual variation. Not all wheelchair/axle adjustments are appropriate for all individuals at all times.” A prosthetist strongly disagreed with the recommendation for moving the rear wheelchair axle forward due to compromising stability of the chair. This informant stressed the need for practitioner adjustment of the recommendation on a case-by-case basis and considering patient, wheelchair, and environmental-specific factors. “It takes up a whole day’s worth of treatment to do one home visit, if I want to modify the home environment.” Regarding power wheelchair use for repetitive injuries, “We don’t necessarily encourage power chair use. It is not our thing. Basically, we do everything else first.” “The bottom line is that everyone is different and because of this, global recommendations are sometimes not applicable or inappropriate.”
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Objective 2 Identify barriers and facilitators for implementing CPG recommendations. Veterans responded to our queries on barriers and facilitators to the CPG recommendations by recounting their personal experiences in general terms and not by focusing on each recommendation. Most barriers identified by veterans concerned administrative and system issues encountered during their clinical experience, © 2013 Association of Rehabilitation Nurses Rehabilitation Nursing 2015, 40, 100–110
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and were perceived as not amenable to change. For example, the challenge of obtaining a power wheelchair was discussed related to the lengthy process of application, high cost, and abundant paperwork required. Other barriers expressed by veterans included the design of the wheel-lock that catches when the veteran transfers from a vehicle to car and the strict criterion for obtaining inhome ceiling lifts. Veterans believed that some of the recommendations were not feasible from a daily function perspective. For instance, one veteran recounted that he used the trapeze for transfer when there was no caregiver at home to assist him. Changing old habits was also discussed—“I’ve been doing the same thing for 20 years and it’s so hard to change that.” Provider reasons for not complying with recommendations were grouped into four categories. First, provid-
Perceptions of Practice Guidelines
ers were concerned with the lack of clinical evidence for some of the recommendations. Second, other recommendations were described as not feasible depending on site of care and clinical resources. Third, some providers felt that recommendations related to equipment were difficult to implement because they believed that equipment should be customized based on patient preferences, functional ability, and clinical parameters. Finally, the use of power wheelchairs generated much discussion with some providers expressing concerns about the negative consequences of their use including the lack of arm and shoulder use that could lead to further reduced activity, increasing disability, weight gain, and long-term consequences of activity-related comorbid conditions such as diabetes, hypertension, and heart disease.
Table 3 Patient and provider suggestions to facilitate CPG implementation Education for Healthcare Providers • Engage in interprofessional team training that emphasizes a team approach • Discuss CPG recommendations during team meetings • Provide compensated time for staff education • Educate staff on new, emerging, evidence-based therapeutic practices • Train staff in interview techniques to trigger the proper consults to pain clinic, and psychological and other services • Develop specialized knowledge and skills among therapists for working with individuals with SCI Education for Patients and Family Members • Engage all team members in patient and family education • Allocate designated space for patient education • Adapt handouts and educational programs to grade school comprehension levels • Use peer educators for patient education • Use social marketing techniques to gain patient buy-in Acquisition and Distribution of Equipment • Provide leased power wheelchairs for trial use • Customize wheelchairs after the first year of use rather than immediately after the injury • Assemble a “therapy fleet” of reconditioned, reissued power chairs • Provide access to current technologies including alternating pressure mattresses, alternatives to the trapeze, power-assist chairs, transfer devices and boards, high-quality mats, and other adaptive equipment (e.g., scoop dishes, special utensils, “reachers”) • Use devices that monitor hand-to-rim location, duration, force, and grasp, to train individuals on executing proper wheelchair strokes • Use pressure monitoring technology to provide real-time feedback to patients and providers Programs and Clinics • Evidence-based weight loss programs for individuals with SCI • Patient, family, and caregiver interdisciplinary wheelchair clinics for training, wheelchair repairs, specialized seating services • Telehealth to increase access to services • Hospital-based wellness centers • Partnerships with researchers to strengthen evidence for recommendations Implementation Tools • Reference list of available complementary and alternative treatments such as acupuncture • Index of commonly used alternative medications and interactions with Western medications • Standardized patient education materials for wheelchair skills, e.g., transfer techniques
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Objective 3
Discussion
Identify recommendations for improving implementation. Patients and providers suggested ways to facilitate CPG implementation that were grouped into five categories: (1) Education for Healthcare Providers, (2) Education for Patients and Family Members, (3) Acquisition and Distribution of Equipment; (4) Programs and Clinics, and (5) Implementation Tools (Table 3). Education of providers and veterans was the most commonly recommended strategy. Respondents emphasized the importance of ongoing interprofessional training, ongoing education for veterans and family members using creative approaches such as social marketing and peer educators, and opportunities for therapists and others to develop expertise in the care of people with SCI, particularly in the area of wheelchair seating evaluation and prescription. Respondents wanted more options for obtaining power wheelchairs and customized wheelchairs (including reconditioned chairs), the latest technologies in adaptive equipment (including mattresses, power-assist chair, transfer devices), and continuous pressure monitoring technologies that could provide real-time feedback to patients and providers. Programs and specialized clinics were suggested to improve access to wheelchair-related services but few specific implementation tools were identified. Representative quotes included: “Once again, we’re going to train them in the best possible techniques for moving and transferring that we can. We’re going to train from the very beginning to use really good transfer techniques—ones that are functional. We start education in initial rehab and hope that with constant education, people will incorporate it. We try to educate patients about over usage and make them understand what joints, nerves, muscles are at risk—education is an ongoing battle, people get set in their ways…” “It comes down to education for nurses, patients and caregivers on proper moving techniques. Ceiling lifts have reduced injuries among patients and have been a great benefit to nursing care! Related knowledge is a big part of nursing education and is important for caregiver training as well…” “We have to be constantly evaluating equipment changes as people age. Making patients understand the importance of proper equipment is central…” “A facilitator for equipment use would be more power-assist wheelchairs, better transfer devices and more teaching on adjusting the chair and pushing the chair to avoid injury.
A large proportion of people with SCI report debilitating UL pain. By identifying barriers and facilitators for CPG implementation, gap identification can inform future research to enhance provider adherence to the recommendations thus improving function, decreasing UL pain, and improving quality of life for patients. Patient and provider suggestions from the study could be used to enhance implementation of the CPG in 24 VHA SCI/D Centers and private-sector facilities. Specifically, findings may be used to: Focus on three areas for immediate implementation of CPG recommendations with strong healthcare provider agreement: flexibility exercises, early intervention for pain, planning ahead for postsurgery recovery time. Develop a research agenda to strengthen the evidence base for recommendations in the areas of health promotion, wellness, and exercise. Capitalize on the importance of teamwork in SCI to implement key recommendations and overcome barriers. Capitalize on skills and knowledge of opinion leaders such as physical and kinesiotherapist, clinical nurse specialists, and prosthetists to provide leadership for revising CPG (e.g., wheelchair selection). Review existing and develop new implementation tools to facilitate guideline implementation. The disparities were apparent between the veteran’s perceptions of what was needed and service-delivery constraints. For example, one veteran stressed the importance of an in-home evaluation because he believed that part of the genesis of his pain was his in-home routine; that may be a potential barrier as some VHAs may be more attuned to doing in-home evaluations than others. Another veteran stressed the importance of being able to work mechanically on his own chair. Doing so gave him a feeling of confidence; however, staff may advise veterans not to repair their wheelchairs. Interestingly, some of the barriers to CPG implementation were self-imposed, such as “macho attitudes” that reflect cultural barriers against carrying around a transfer board. Power wheelchairs were viewed as a symbol of “breaking down and getting old” whereas manual wheelchairs were viewed as symbols of independence.
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Limitations Limitations to this analysis included: (1) It did not distinguish between barriers and facilitators linked with imple-
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menting UL CPG in institutionalized settings compared to noninstitutionalized settings, (2) Methodology did not allow for analysis of the interaction among factors that affect UL functioning (e.g., assistive equipment such as patient lift device vs. transfer board, comorbidities), (3) Perceptions of facilitators and barriers for implementation did not include family or paid caregivers, and (4) Analysis was not stratified by level of injury (e.g., tetraplegic vs. paraplegic) or extent of injury (e.g., complete vs. incomplete). Furthermore, data disparities could have resulted by data collection method, that is, in-person focus groups in Tampa versus telephone focus groups in the Seattle and Hines SCI Centers.
Perceptions of Practice Guidelines
Key Practice Points Patient and provider suggestions from the study could be used to enhance implementation of the CPG in SCI Centers. Providers and patients agreed with many elements of the UL CPG. When providers and patients disagreed with CPG recommendations, it was related to either lack of evidence or the impracticality of implementing the recommendation. A consistent interdisciplinary team is necessary to facilitate coordination and communication across services in CPG implementation.
Conclusions
Acknowledgments
CPGs are valuable in that they synthesize empirical and clinical evidence—a standardized format to guide clinical practice. However, effective implementation of recommendations requires a concerted effort including identifying and reducing barriers, and supporting facilitators. Providers and patients agreed with many elements of the UL CPG. When they disagreed, it was related to either lack of evidence or the impracticality of implementing the recommendation. We concluded that several themes regarding facilitators and barriers to CPG implementation were consistent among veterans, providers, and key informants. These were: 1. Variations in veteran’s characteristics rendered implementation of certain CPG unfeasible for all veterans all of the time (e.g., age, height, weight, strength, level and duration of injury, economic, educational and caregiver status), 2. Issues within the VHA health care system, that if addressed, could hasten implementation of recommendations (e.g., dedicating space for staff; patient and family education; streamlining cumbersome processes and paperwork; using telemedicine technologies for treating patients who live at a distance from the healthcare facilities; providing increased staff education, equipment, and other resources), 3. A consistent interdisciplinary team could facilitate coordination and communication across services in CPG implementation, 4. An evidence base that includes few randomized controlled trials necessitates strong clinical judgment in applying guideline recommendations, and 5. Special and innovative clinical techniques, programs, approaches, product development, and devices could support implementation of recommendations.
The authors wish to acknowledge Audrey L. Nelson, PhD, RN, FAAN, Retired Director, HSR&D/RR&D Center of Excellence, who with Dr. Weaver, conceptualized the study and provided leadership for conduct of the research. We also appreciate the contributions of Barry Goldstein, MD, PhD, Co-Investigator, Deputy Chief Consultant for the Strategic Healthcare Group for Spinal Cord Injury in Seattle, Clinical Co-coordinator of the SCI-QUERI, and Professor of Rehabilitation Medicine at the University of Washington; Scott Miskevics, QUERI Programmer; and Mary Reeder, transcriptionist.
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Disclaimer This material is based upon work supported by the Office of Research and Development, Health Services R&D Service, Department of Veterans Affairs (RRP 06-151). The views expressed in this article are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs.
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