http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, Early Online: 1–6 ! 2015 Informa UK Ltd. DOI: 10.3109/09638288.2015.1044031
REHABILITATION AND PRACTICE
Bridging the gap: the role of Physiatrists in caring for adults with cerebral palsy Caitlin Cassidy1,2, Nerissa Campbell3, Mona Madady3, and Michael Payne1,2 Department of Physical Medicine and Rehabilitation, Western University, London, ON, Canada, 2Parkwood Institute, St Joseph’s Health Care London, London, ON, Canada, and 3Lawson Health Research Institute, St Joseph’s Health Care London, London, ON, Canada
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Abstract
Keywords
Purpose: Individuals with cerebral palsy (CP) experience a significant gap in care as they move from interdisciplinary pediatric programs to limited or non-existent care in the adult sector. A lack of knowledgeable adult care providers has repeatedly been identified as a challenge in transitioning those with CP from pediatric to adult care. The objective of this study was to determine the extent to which Physiatrists provide care to adults with CP and to identify barriers to their engagement with this population. Method: A survey was distributed to Physiatrists across Canada. Results were analyzed descriptively using SPSS software. Results: Most Physiatrists provide care to very few adults with CP (10 or less), but over 80% feel that Physiatry is the most appropriate specialty to provide disability-related care to adults with CP following their pediatric discharge. Among the most frequently identified barriers to caring for this population were lack of accessible resources (i.e. social work, funded therapy, equipment) and lack of referrals. Conclusions: Physiatrists are willing and appropriate partners in transitioning patients with CP to adult care. Barriers to Physiatrists’ engagement with this population appear to be amenable to change.
Adults, Canada, care, cerebral palsy, physical medicine and rehabilitation History Received 5 August 2014 Revised 14 April 2015 Accepted 20 April 2015 Published online 13 May 2015
ä Implications for Rehabilitation
A lack of knowledgeable and interested adult practitioners has repeatedly been identified as a challenge in transition planning for young adults with cerebral palsy (the vast majority of whom survive into adulthood). Physiatrists are ideally suited to manage adults with cerebral palsy, yet in this survey-based study, a majority of Canadian Physiatrists report caring for less than five adults with cerebral palsy on a regular basis. Barriers to further physiatric involvement in this population were reported to include lack of accessible resources and lack of referrals.
Introduction Cerebral palsy (CP) is the most common disabling condition of childhood, affecting 2–3/1000 live births [1]. Children with CP can be very mildly or very severely afflicted so that the range of disability in this population is wide. Canadian children with CP typically benefit from well-structured, interdisciplinary pediatric care programs designed specifically to meet their varied health care and rehabilitative needs [2]. With increasing quality of care during childhood, approximately 90% of children with CP now reach adulthood [3,4], with the greatest gains having been made among those with severely disabling CP (whose 20-year survival was once as low as 50%) [5]. The result has been an increasing
Address for correspondence: Caitlin Cassidy, Parkwood Institute, St Joseph’s Health Care London, Main Building D4-101N, 500 Wellington Rd, London, ON N6C 0A7, Canada. Tel: +1-519-6466000. Ext 45027. E-mail: [email protected]
number of these patients graduating to the adult health care system, where traditionally there has been no structured interdisciplinary care and relatively few practitioners with an interest in CP waiting to greet them [6,7]. Several studies have demonstrated some of the numerous challenges and disappointments of this crucial transition, which have included: lack of coordination/ communication between pediatrics and adult services, loss of services, patient feelings of being abandoned by the system and, importantly, a lack of knowledgeable and interested adult practitioners [7–12]. For adults with CP, this has resulted in what has been described as a ‘‘patchwork quilt’’ of care, with patients seeing a myriad of different health care providers in an effort to piece together the essential elements of their health care [9]. There is also evidence to suggest that just as adults with CP lose access to the cohesive specialty care they received as children, they report increased rates of various complications, including functional decline (feeding, mobility) [13–16] and increased rates of pain and other secondary complications (bowel and bladder dysfunction, increased spasticity) [17,18].
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This gap in the health care system has been identified repeatedly in developed countries around the world [6–8,11,19]. The Canadian Pediatric Society’s position statement on the transition from pediatric to adult care for children with chronic conditions stresses the importance of planning early for transition and of integrating adult care providers in this often challenging process [20]. While models for improved transition have been proposed, feasible clinical solutions to the problem have been harder to come by [20–23]. Unfortunately, challenges remain in identifying the appropriate adult care providers to serve adults with CP. No specific adult medical services have conventionally been dedicated to this population, and care providers may not be aware of what specialty support is available in the community [7]. Physiatrists are extensively trained to serve patients with disabling conditions affecting multiple domains [24], including those with difficulties relating to mobility and spasticity, bowel and bladder dysfunction, communication and many other challenges commonly experienced by adults with CP. Despite the presence of these specialized physicians in academic and community settings, a lack of interested and knowledgeable adult practitioners continue to be identified as a major problem in transitioning adults with CP into adult health care settings. Pediatric Physiatrists are often involved in the care of youth and occasionally young adults with CP, but the degree to which Physiatrists overall currently engage in the care of adults with CP in Canada is unclear. Therefore, the objective of this study was to determine the extent of involvement of Canadian Physiatrists in providing care to adults with CP and to identify potential barriers preventing them from becoming more involved in the care of these patients.
Methods The current study was a descriptive, exploratory survey study. The survey was drafted by two of the study authors (CC, MP). Item generation was based on clinical experience, input from local Physiatrists, and existing data about barriers to transitional care services [6,7,9]. Prior to the start of the study, the survey was pilot tested with a group of local Physiatrists, which led to some minor changes made to increase clarity. The final draft of the survey comprised 10 sections, including questions regarding demographics, practice patterns and questions about potential barriers to caring for adults with CP (such as lack of interest, lack of accessible resources, lack of referrals). In the summer of 2012, the survey was distributed electronically to all members of the Canadian Association of Physical Medicine and Rehabilitation (CAPM&R), which has approximately 245 physician members, representing nearly 60% of Physiatrists in Canada [25]. In total, the survey took approximately 5 min to complete (the completion of each question was optional). This study received ethics approval from the Research Ethics Board at the University of Western Ontario. Descriptive data analysis was performed on all available survey responses using an IBM SPSS Statistics database (SPSS Inc., Chicago, IL). Since one objective of this study was to identify barriers to seeing adults with CP among a group of physicians theoretically appropriate to manage this population, responses from Physiatrists who indicated that adults with CP were not appropriate patients for their clinical practice were excluded from the analysis of reported barriers. To determine if various groups of physicians differed significantly in the rate with which they identified certain barriers, comparisons were made between two different physician groupings using Chi square tests. Specifically, differences were analyzed between Physiatrists based on (a) caseload of adult patients with CP and (b) practice setting (academic versus
Disabil Rehabil, Early Online: 1–6
non-academic). Due to the high number of comparisons being examined, a Bonferroni correction was employed, resulting in the determination that a statistically significant result was identified if p50.0045.
Results Responses from 107 practicing Physiatrists were received, indicating an overall response rate of approximately 44.6%. A portion of respondents did not fully complete the questionnaire, which accounts for the variable ‘‘n’’ in the reported responses. Refer to Table 1 for a description of the study population. The services most commonly provided by Physiatrists to adults with CP include spasticity management and consultation regarding mobility and orthoses (Figure 1). In total, 69.2% of practicing Physiatrists reported providing care to less than 10 adults with CP. Overall, 80.4% of surveyed Physiatrists indicated that PM&R is the most appropriate service to assume regular care of disabilityrelated issues in adults with CP. Twenty-one physiatrists indicated that, based on their own assessments, adults with CP were not appropriate patients to be included in their practice. Of those 21 individuals, 19 (90.4%) reported providing care to less than five adults with CP. When asked to describe their practices, the three most commonly identified work activities were related to musculoskeletal rehabilitation, administration/education and research. They reported few barriers to being involved in the care of adults with CP, but most frequently cited that adults with CP were already followed by other physicians, a lack of referrals and a lack of accessible resources (including social work, equipment and funded therapy programs). 76.2% still indicated that they felt PM&R was the most appropriate service to provide disabilityrelated care to adults with CP. The remaining 23.8% indicated either that Family Physicians should assume this role or that they were unsure of what service would be most appropriate to provide ongoing care to adults with CP. Eighty-six physiatrists did not indicate that caring for adults with CP would be inappropriate given their clinical practice. Table 1. Description of the study population (n ¼ 107). n (%) Years in practice 0–2 years of practice 2–5 years of practice 5–10 years of practice 410 years of practice
6 4 19 61
90 (6.7) (4.4) (21.1) (67.8)
Location of practice Ontario British Columbia Alberta Other (Saskatchewan, New Brunswick, Manitoba, Nova Scotia, Quebec)
41 18 15 17
91 (45.1) (19.8) (16.4) (18.7)
Setting of practice Academic Non-academic (urban and rural)
93 45 (48.4) 48 (51.6)
Nature of practice Primarily inpatient Primarily outpatient Mixed in/outpatient
86 4 (4.7) 31 (36.0) 51 (59.3)
Provide regular care to 0 adults with CP 55 adults with CP 5–10 adults with CP 11–30 adults with CP 430 adults with CP
32 23 10 19 10
94 (34.1) (24.5) (10.6) (20.2) (10.6)
Caring for adults with CP
DOI: 10.3109/09638288.2015.1044031
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Figure 1. Services provided by Physiatrists to adults with CP (n ¼ 94 respondents). Other services included: assistance in surgical decision-making, general medical care counseling regarding transition to adult care.
Table 2. Barriers to becoming more involved in the care of adults with CP (n ¼ 86). Barrier Insufficient accessible resources (i.e. social workers, funded therapy programs, equipment, etc.) Lack of referrals These patients are already being followed by other physicians in my area Insufficient financial compensation for seeing these complex patients Inadequate training in PMR residency contributing to insufficient expertise in management of CP Lack of Continuing Medical Education contributing to insufficient expertise in management of CP Not interested Lack of appropriate transfer of information regarding past medical history Inadequate training in medical school contributing to insufficient expertise in management of CP These patients don’t need Physiatry consult/follow up Other Lack of support staff (e.g. lack of support staff, multidisciplinary clinics) Lack of awareness (e.g. lack of patient/General Practitioner familiarity with PMR and what Physiatrists could offer these patients) Lack of best practice guidelines (e.g. lack of information to guide management of chronic conditions related to CP)
% 39.5 34.9 18.6 18.6 17.4 16.3 15.1 12.8 7.0 3.5 22.1
likely to report a lack of accessible resources for adults with CP (reported by 67.9%) than those with a caseload of less than five adults with CP (reported by 27.8%) (p ¼ 0.003). Figures 2 and 3 are graphic representations of the frequency of reported barriers in each subgroup.
Discussion The overwhelming majority (80.4%) of Canadian Physiatrists surveyed in this study identified Physiatry as the most appropriate service to provide ongoing care for disability-related issues in adults with CP. At the same time, most Physiatrists provide care to remarkably few patients with CP (58.8% of surveyed practicing Physiatrists reported providing care to four or less adults with CP). This startling discrepancy begs the question, if, by their own accord, Physiatrists are the most appropriate service providers for this population, why aren’t they providing the needed service to more patients? Barriers identified This study demonstrates that there are currently many barriers to the involvement of Physiatrists in the care of adults with CP. Importantly though, many of these are clearly amenable to change. Others, including lack of accessible resources, may be more challenging to resolve but could potentially be addressed through innovative resource management strategies. The most commonly identified barriers are discussed below. Lack of resources
The three most commonly identified clinical practice activities among this group were musculoskeletal rehabilitation, electrodiagnostics and spasticity management. 61.7% reported providing care to 10 or fewer adults with CP, while 81.7% indicated that PM&R is the most appropriate service to provide disabilityrelated care to adults with CP. The most commonly identified barriers were lack of accessible resources (i.e. social work, funded therapy, etc.), lack of referrals, and a belief that these patients were already being followed adequately (Table 2). Respondents were invited to indicate ‘‘other’’ barriers not already listed as options within the survey. These were qualitatively analyzed to identify common themes and are presented in Table 2.
In 2003, Beatty et al. demonstrated that among adults with CP, only approximately half of patients received rehabilitation services when they were needed and only approximately 60% had access to needed assistive devices [26]. Lack of accessible resources has frequently been identified as a problem for adults with complex health care needs (and for adults with CP in particular) [7,9,10]. While adults with CP are already disadvantaged in terms of their access to needed resources, the current study findings demonstrate that this lack of resources appears to be further compounded by contributing to limited access to needed care from Physiatrists. There is a perception among Physiatrists that in many cases, seeing adults with CP may be futile, as a treatment plan can be developed but the resources required to implement the plan are frequently unavailable or inaccessible.
Subgroup analyses In the subgroup analyses, only one between-group difference emerged as being statistically significant. Physiatrists with a caseload of more than 10 adults with CP were significantly more
Lack of referrals The identification of lack of referrals as such a commonly cited barrier (reported by 34.9%) is an important finding,
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Figure 2. Comparison in barrier reporting between academic and non-academic Physiatrists.
Figure 3. Comparison in barrier reporting between Physiatrists who follow less than 5 adults with CP versus those who follow more than 10 adults with CP. *Statistically significant inter-group difference (p ¼ 0.003).
particularly when added to the qualitative information presented that Physiatrists believe patients with CP and their physicians may be unaware of what a PM&R specialist could offer them. Previously published data suggest that there is a lack of adult practitioners willing to take on the care of adults with CP [7,9,21], but it is unclear if Physiatry has been identified or pursued as an appropriate ‘‘destination’’ for these patients by their care teams. An awareness of the most frequently offered physiatric services for adults with CP (as presented
above, including spasticity management, seating/orthosis/ mobility consultation, pain control, care coordination) may be all that is needed to encourage practitioners currently caring for these patients to consider making a referral to Physiatry on their behalf. Belief that these patients are already being followed adequately A significant proportion of Physiatrists (18.6%) felt that other physicians were already providing the needed services to adults
Caring for adults with CP
DOI: 10.3109/09638288.2015.1044031
with CP. However, Young et al. demonstrated in 2007 that only 28.6% of adults with CP had a primary care provider and that they had fewer specialist visits and more emergency room visits than children with CP [2]. They also noted that the data presented could not account for needed services that were not being provided, and as such may have underestimated the inadequacy of available services for this population [2]. This suggests that a significant proportion of adults with CP may not be receiving the medical care they require.
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Subgroup analysis In between-group comparisons, the only statistically significant difference identified was a lack of accessible resources, which was identified by 67.9% of Physiatrists with a caseload of more than 10 adults with CP, but by only 27.8% of those with a caseload of less than five. This could theoretically be related to a lack of referrals to Physiatry in centere that are exceptionally well resourced. Perhaps a more compelling potential explanation for this, however, is that those with greater experience in managing adults with CP have a greater awareness of the lack of services available for this population. The role of the General Practitioner Thirteen percent of all surveyed practicing Physiatrists felt that Family Physicians should assume the care of disability-related issues for individuals with CP once they reach adulthood. There is, however, evidence to suggest that patients and General Practitioners themselves commonly feel that generalists lack the needed expertise to effectively manage the multitude of issues presented by adults with complex needs [7,8,10,27]. The involvement of a General Practitioner in the care of adults with CP is crucial to provide preventative health care and to oversee care in general [17]. However, it is likely unrealistic to expect Family Physicians to manage the numerous CP-related complications that can arise (or persist) into adulthood, including mobility issues, spasticity, bowel and bladder dysfunction, feeding challenges and chronic pain. This is underscored by the fact that, of surveyed Physiatrists, 17.4% felt they had inadequate residency training in CP and 16.3% felt that there was inadequate continuing medical education to maintain sufficient expertise in this area. If a significant proportion of Physiatrists, who are specialists in providing disability-related care, feel that it is difficult to maintain expertise in this clinical realm, it is reasonable to think that Family Physicians may struggle with this to an even greater degree. Strengths and limitations To our knowledge, this is the first study intended to provide a general description of practice patterns relating to adults with CP among Canadian Physiatrists, and to potentially provide a basis for future research into the role of Physiatry in the care of this population. It has several limitations. The study was conducted using a survey of Canadian Physiatrists that was developed by the authors, and though it is based upon a review of the available evidence, it may have omitted important questions. Also, survey data are inherently subjective to selection bias, as responding to the questionnaire was entirely voluntary. Finally, these results reflect the perceptions of Canadian Physiatrists about their own practices rather than objective data on numbers of and reasons for clinic visits made by adults with CP to Physiatrists, which may provide more reliable data about true Physiatric practice patterns in the care of adults with CP. Further research is needed to more fully delineate the role of the Physiatrist in caring for this complex patient population and to determine if an increase in regular
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service provision by Physiatrists would improve medical and functional outcomes for adults with CP.
Conclusion CP is the most common disability of childhood onset [1], and the vast majority of patients survive well into adulthood [3,4]. Pediatric practitioners and patients have often reported significant difficulties in finding qualified, interested adult practitioners to care for those with CP once they reach adulthood. This study demonstrates that, despite the size and significant rehabilitative needs of this population, most Physiatrists practicing in Canada are serving very few adults with CP. Interestingly, the majority of the same Physiatrists feel that PM&R is the most appropriate service to take over the regular care of disability-related issues for these patients following their discharge from pediatric services. Many barriers to involvement in the care of adults with CP were identified and importantly appear to be amenable to change. These include lack of accessible resources (i.e. equipment, social work, funded therapy) and lack of referrals, suggesting that Physiatrists may be an untapped resource in the management of adults with CP. Stevenson commented that in the care of this population, there appears to be an ‘unplugged gap for what might be called a ‘‘community disability physician’’’ [19]. With expert training in the management of many of the symptoms experienced by adults with CP (spasticity, mobility issues, neurogenic bowel/ bladder, pain, etc.), Physiatrists seem ideally suited to rise to the challenge and ‘‘plug the gap’’.
Declaration of interest The authors report no declarations of interest.
References 1. Shevell M, Dagenais L, Oskoui M. The epidemiology of cerebral palsy: new perspectives from a Canadian registry. Semin Pediatr Neurol 2012;20:60–4. 2. Young NL, Gilbert TK, McCormick A, et al. Youth and young adults with cerebral palsy: their use of physician and hospital services. Arch Phys Med Rehabil 2007;88:696–702. 3. Strauss D, Brooks J, Rosenbloom L, Shavelle R. Life expectancy in cerebral palsy: an update. Dev Med Child Neurol 2008;50: 487–93. 4. Rapp CE, Margarita M. The adult with cerebral palsy. Arch Fam Med 2000;9:466–72. 5. Hutton JL, Cooke T, Pharoah POD. Life expectancy in children with cerebral palsy. BMJ 1994;309:431–5. 6. MacCharles T. [Internet]. Services for children and youth with special needs in Ontario, and their families: opportunities for improving their experiences and outcomes. Advice to Minister Piruzza, Minister of Children and Youth Services from the Honourable Tracy MacCharles, Minister of Consumer Services, former Parliamentary Assistant to the Minister of Children and Youth Services. Ontario: Ministry of Children and Youth Services; 2013. Available from: http://www.children.gov.on.ca/htdocs/ English/documents/topics/specialneeds/PAreport.pdf [last accessed 13 Nov 2013]. 7. Binks JA, Barden WS, Burke TA, Young NL. What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida. Arch Phys Med Rehabil 2007;88: 1064–73. 8. Reiss JG, Gibson RW, Walker LR. Health care transition: youth, family, and provider perspectives. Pediatrics 2005;115:112–20. 9. Reiss J, Gibson R. Health care transition: destinations unknown. Pediatrics 2002;110:1307–14. 10. Lariviere-Bastien D, Bell E, Majnemer A, et al. Perspectives of young adults with cerebral palsy on transitioning from pediatric to adult healthcare systems. Semin Pediatr Neurol 2013;20: 154–9.
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11. Klingbeil H, Baer H, Wilson PE. Aging with a disability. Arch Phys Med Rehabil 2004;85:S68–73. 12. Lotstein DS, Inkelas M, Hays RD, et al. Access to care for youth with special health care needs in the transition to adulthood. J Adolesc Health 2008;43:23–9. 13. Krakovsky G, Martz Huth M, Lin L, Levin RS. Functional changes in children, adolescents, and young adults with cerebral palsy. Res Dev Disabil 2007;28:331–40. 14. Andersson C, Mattsson E. Adults with cerebral palsy: a survey describing problems, needs, and resources, with special emphasis on locomotion. Dev Med Child Neurol 2001;43:76–82. 15. Opheim A, Jahnsen R, Olsson E, Stanghelle JK. Walking function, pain, and fatigue in adults with cerebral palsy: a 7-year follow-up study. Dev Med Child Neurol 2009;51:381–8. 16. Bottos M, Feliciangeli A, Sciuto L, et al. Functional status of adults with cerebral palsy and implications for treatment of children. Dev Med Child Neurol 2001;43:516–28. 17. Liptak GS. Health and well being of adults with cerebral palsy. Curr Opin Neurol 2008;21:136–42. 18. Young NL, Steele C, Fehlings D, et al. Use of health care among adults with chronic and complex physical disabilities of childhood. Disabil Rehabil 2005;27:1455–60. 19. Stevenson CJ, Pharoah POD, Stevenson R. Cerebral palsy – the transition from youth to adulthood. Dev Med Child Neurol 1997;39: 336–42.
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20. Pinzon J, Kaufman M. Canadian paediatric society position statement: transition to adult care for youth with special health care needs. Paediatr Child Health 2007;12:785–8. 21. Oskoui M. Growing up with cerebral palsy: contemporary challenges of healthcare transition. Can J Neurol Sci 2012;39:23–5. 22. Oskoui M, Wolfson C. Current practice and views of neurologists on the transition from pediatric to adult health care. J Child Neurol 2012;27:1553–8. 23. Watson R, Parr JR, Joyce C, et al. Models of transitional care for young people with complex health needs: a scoping review. Child Care Health Dev 2011;37:780–91. 24. AAPM&R. [Internet]. What is a physiatrist? American Academy of Physical Medicine and Rehabilitation. Available from: http://www. aapmr.org/patients/aboutpmr/Pages/physiatrist.aspx [last accessed 7 Jan 2014]. 25. Canadian Medical Association. [Internet]. Physical medicine and rehabilitation profile. 2013. Available from: https://www.cma.ca/ Assets/assets-library/document/en/advocacy/Physical-Med-Rehab-e. pdf [last accessed 8 Apr 2015]. 26. Beatty PW, Hagglund KJ, Neri MT, et al. Access to healthcare services among people with chronic or disabling conditions: patterns and predictors. Arch Phys Med Rehabil 2003;84:1417–25. 27. O’Connell B, Bailey S, Pearce J. Straddling the pathway from paediatrician to mainstream health care: transition issues experienced in disability care. Aust J Rural Health 2003;11:57–63.
REHABILITATION AND PRACTICE
Bridging the gap: the role of Physiatrists in caring for adults with cerebral palsy Caitlin Cassidy1,2, Nerissa Campbell3, Mona Madady3, and Michael Payne1,2 Department of Physical Medicine and Rehabilitation, Western University, London, ON, Canada, 2Parkwood Institute, St Joseph’s Health Care London, London, ON, Canada, and 3Lawson Health Research Institute, St Joseph’s Health Care London, London, ON, Canada
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Abstract
Keywords
Purpose: Individuals with cerebral palsy (CP) experience a significant gap in care as they move from interdisciplinary pediatric programs to limited or non-existent care in the adult sector. A lack of knowledgeable adult care providers has repeatedly been identified as a challenge in transitioning those with CP from pediatric to adult care. The objective of this study was to determine the extent to which Physiatrists provide care to adults with CP and to identify barriers to their engagement with this population. Method: A survey was distributed to Physiatrists across Canada. Results were analyzed descriptively using SPSS software. Results: Most Physiatrists provide care to very few adults with CP (10 or less), but over 80% feel that Physiatry is the most appropriate specialty to provide disability-related care to adults with CP following their pediatric discharge. Among the most frequently identified barriers to caring for this population were lack of accessible resources (i.e. social work, funded therapy, equipment) and lack of referrals. Conclusions: Physiatrists are willing and appropriate partners in transitioning patients with CP to adult care. Barriers to Physiatrists’ engagement with this population appear to be amenable to change.
Adults, Canada, care, cerebral palsy, physical medicine and rehabilitation History Received 5 August 2014 Revised 14 April 2015 Accepted 20 April 2015 Published online 13 May 2015
ä Implications for Rehabilitation
A lack of knowledgeable and interested adult practitioners has repeatedly been identified as a challenge in transition planning for young adults with cerebral palsy (the vast majority of whom survive into adulthood). Physiatrists are ideally suited to manage adults with cerebral palsy, yet in this survey-based study, a majority of Canadian Physiatrists report caring for less than five adults with cerebral palsy on a regular basis. Barriers to further physiatric involvement in this population were reported to include lack of accessible resources and lack of referrals.
Introduction Cerebral palsy (CP) is the most common disabling condition of childhood, affecting 2–3/1000 live births [1]. Children with CP can be very mildly or very severely afflicted so that the range of disability in this population is wide. Canadian children with CP typically benefit from well-structured, interdisciplinary pediatric care programs designed specifically to meet their varied health care and rehabilitative needs [2]. With increasing quality of care during childhood, approximately 90% of children with CP now reach adulthood [3,4], with the greatest gains having been made among those with severely disabling CP (whose 20-year survival was once as low as 50%) [5]. The result has been an increasing
Address for correspondence: Caitlin Cassidy, Parkwood Institute, St Joseph’s Health Care London, Main Building D4-101N, 500 Wellington Rd, London, ON N6C 0A7, Canada. Tel: +1-519-6466000. Ext 45027. E-mail: [email protected]
number of these patients graduating to the adult health care system, where traditionally there has been no structured interdisciplinary care and relatively few practitioners with an interest in CP waiting to greet them [6,7]. Several studies have demonstrated some of the numerous challenges and disappointments of this crucial transition, which have included: lack of coordination/ communication between pediatrics and adult services, loss of services, patient feelings of being abandoned by the system and, importantly, a lack of knowledgeable and interested adult practitioners [7–12]. For adults with CP, this has resulted in what has been described as a ‘‘patchwork quilt’’ of care, with patients seeing a myriad of different health care providers in an effort to piece together the essential elements of their health care [9]. There is also evidence to suggest that just as adults with CP lose access to the cohesive specialty care they received as children, they report increased rates of various complications, including functional decline (feeding, mobility) [13–16] and increased rates of pain and other secondary complications (bowel and bladder dysfunction, increased spasticity) [17,18].
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This gap in the health care system has been identified repeatedly in developed countries around the world [6–8,11,19]. The Canadian Pediatric Society’s position statement on the transition from pediatric to adult care for children with chronic conditions stresses the importance of planning early for transition and of integrating adult care providers in this often challenging process [20]. While models for improved transition have been proposed, feasible clinical solutions to the problem have been harder to come by [20–23]. Unfortunately, challenges remain in identifying the appropriate adult care providers to serve adults with CP. No specific adult medical services have conventionally been dedicated to this population, and care providers may not be aware of what specialty support is available in the community [7]. Physiatrists are extensively trained to serve patients with disabling conditions affecting multiple domains [24], including those with difficulties relating to mobility and spasticity, bowel and bladder dysfunction, communication and many other challenges commonly experienced by adults with CP. Despite the presence of these specialized physicians in academic and community settings, a lack of interested and knowledgeable adult practitioners continue to be identified as a major problem in transitioning adults with CP into adult health care settings. Pediatric Physiatrists are often involved in the care of youth and occasionally young adults with CP, but the degree to which Physiatrists overall currently engage in the care of adults with CP in Canada is unclear. Therefore, the objective of this study was to determine the extent of involvement of Canadian Physiatrists in providing care to adults with CP and to identify potential barriers preventing them from becoming more involved in the care of these patients.
Methods The current study was a descriptive, exploratory survey study. The survey was drafted by two of the study authors (CC, MP). Item generation was based on clinical experience, input from local Physiatrists, and existing data about barriers to transitional care services [6,7,9]. Prior to the start of the study, the survey was pilot tested with a group of local Physiatrists, which led to some minor changes made to increase clarity. The final draft of the survey comprised 10 sections, including questions regarding demographics, practice patterns and questions about potential barriers to caring for adults with CP (such as lack of interest, lack of accessible resources, lack of referrals). In the summer of 2012, the survey was distributed electronically to all members of the Canadian Association of Physical Medicine and Rehabilitation (CAPM&R), which has approximately 245 physician members, representing nearly 60% of Physiatrists in Canada [25]. In total, the survey took approximately 5 min to complete (the completion of each question was optional). This study received ethics approval from the Research Ethics Board at the University of Western Ontario. Descriptive data analysis was performed on all available survey responses using an IBM SPSS Statistics database (SPSS Inc., Chicago, IL). Since one objective of this study was to identify barriers to seeing adults with CP among a group of physicians theoretically appropriate to manage this population, responses from Physiatrists who indicated that adults with CP were not appropriate patients for their clinical practice were excluded from the analysis of reported barriers. To determine if various groups of physicians differed significantly in the rate with which they identified certain barriers, comparisons were made between two different physician groupings using Chi square tests. Specifically, differences were analyzed between Physiatrists based on (a) caseload of adult patients with CP and (b) practice setting (academic versus
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non-academic). Due to the high number of comparisons being examined, a Bonferroni correction was employed, resulting in the determination that a statistically significant result was identified if p50.0045.
Results Responses from 107 practicing Physiatrists were received, indicating an overall response rate of approximately 44.6%. A portion of respondents did not fully complete the questionnaire, which accounts for the variable ‘‘n’’ in the reported responses. Refer to Table 1 for a description of the study population. The services most commonly provided by Physiatrists to adults with CP include spasticity management and consultation regarding mobility and orthoses (Figure 1). In total, 69.2% of practicing Physiatrists reported providing care to less than 10 adults with CP. Overall, 80.4% of surveyed Physiatrists indicated that PM&R is the most appropriate service to assume regular care of disabilityrelated issues in adults with CP. Twenty-one physiatrists indicated that, based on their own assessments, adults with CP were not appropriate patients to be included in their practice. Of those 21 individuals, 19 (90.4%) reported providing care to less than five adults with CP. When asked to describe their practices, the three most commonly identified work activities were related to musculoskeletal rehabilitation, administration/education and research. They reported few barriers to being involved in the care of adults with CP, but most frequently cited that adults with CP were already followed by other physicians, a lack of referrals and a lack of accessible resources (including social work, equipment and funded therapy programs). 76.2% still indicated that they felt PM&R was the most appropriate service to provide disabilityrelated care to adults with CP. The remaining 23.8% indicated either that Family Physicians should assume this role or that they were unsure of what service would be most appropriate to provide ongoing care to adults with CP. Eighty-six physiatrists did not indicate that caring for adults with CP would be inappropriate given their clinical practice. Table 1. Description of the study population (n ¼ 107). n (%) Years in practice 0–2 years of practice 2–5 years of practice 5–10 years of practice 410 years of practice
6 4 19 61
90 (6.7) (4.4) (21.1) (67.8)
Location of practice Ontario British Columbia Alberta Other (Saskatchewan, New Brunswick, Manitoba, Nova Scotia, Quebec)
41 18 15 17
91 (45.1) (19.8) (16.4) (18.7)
Setting of practice Academic Non-academic (urban and rural)
93 45 (48.4) 48 (51.6)
Nature of practice Primarily inpatient Primarily outpatient Mixed in/outpatient
86 4 (4.7) 31 (36.0) 51 (59.3)
Provide regular care to 0 adults with CP 55 adults with CP 5–10 adults with CP 11–30 adults with CP 430 adults with CP
32 23 10 19 10
94 (34.1) (24.5) (10.6) (20.2) (10.6)
Caring for adults with CP
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Figure 1. Services provided by Physiatrists to adults with CP (n ¼ 94 respondents). Other services included: assistance in surgical decision-making, general medical care counseling regarding transition to adult care.
Table 2. Barriers to becoming more involved in the care of adults with CP (n ¼ 86). Barrier Insufficient accessible resources (i.e. social workers, funded therapy programs, equipment, etc.) Lack of referrals These patients are already being followed by other physicians in my area Insufficient financial compensation for seeing these complex patients Inadequate training in PMR residency contributing to insufficient expertise in management of CP Lack of Continuing Medical Education contributing to insufficient expertise in management of CP Not interested Lack of appropriate transfer of information regarding past medical history Inadequate training in medical school contributing to insufficient expertise in management of CP These patients don’t need Physiatry consult/follow up Other Lack of support staff (e.g. lack of support staff, multidisciplinary clinics) Lack of awareness (e.g. lack of patient/General Practitioner familiarity with PMR and what Physiatrists could offer these patients) Lack of best practice guidelines (e.g. lack of information to guide management of chronic conditions related to CP)
% 39.5 34.9 18.6 18.6 17.4 16.3 15.1 12.8 7.0 3.5 22.1
likely to report a lack of accessible resources for adults with CP (reported by 67.9%) than those with a caseload of less than five adults with CP (reported by 27.8%) (p ¼ 0.003). Figures 2 and 3 are graphic representations of the frequency of reported barriers in each subgroup.
Discussion The overwhelming majority (80.4%) of Canadian Physiatrists surveyed in this study identified Physiatry as the most appropriate service to provide ongoing care for disability-related issues in adults with CP. At the same time, most Physiatrists provide care to remarkably few patients with CP (58.8% of surveyed practicing Physiatrists reported providing care to four or less adults with CP). This startling discrepancy begs the question, if, by their own accord, Physiatrists are the most appropriate service providers for this population, why aren’t they providing the needed service to more patients? Barriers identified This study demonstrates that there are currently many barriers to the involvement of Physiatrists in the care of adults with CP. Importantly though, many of these are clearly amenable to change. Others, including lack of accessible resources, may be more challenging to resolve but could potentially be addressed through innovative resource management strategies. The most commonly identified barriers are discussed below. Lack of resources
The three most commonly identified clinical practice activities among this group were musculoskeletal rehabilitation, electrodiagnostics and spasticity management. 61.7% reported providing care to 10 or fewer adults with CP, while 81.7% indicated that PM&R is the most appropriate service to provide disabilityrelated care to adults with CP. The most commonly identified barriers were lack of accessible resources (i.e. social work, funded therapy, etc.), lack of referrals, and a belief that these patients were already being followed adequately (Table 2). Respondents were invited to indicate ‘‘other’’ barriers not already listed as options within the survey. These were qualitatively analyzed to identify common themes and are presented in Table 2.
In 2003, Beatty et al. demonstrated that among adults with CP, only approximately half of patients received rehabilitation services when they were needed and only approximately 60% had access to needed assistive devices [26]. Lack of accessible resources has frequently been identified as a problem for adults with complex health care needs (and for adults with CP in particular) [7,9,10]. While adults with CP are already disadvantaged in terms of their access to needed resources, the current study findings demonstrate that this lack of resources appears to be further compounded by contributing to limited access to needed care from Physiatrists. There is a perception among Physiatrists that in many cases, seeing adults with CP may be futile, as a treatment plan can be developed but the resources required to implement the plan are frequently unavailable or inaccessible.
Subgroup analyses In the subgroup analyses, only one between-group difference emerged as being statistically significant. Physiatrists with a caseload of more than 10 adults with CP were significantly more
Lack of referrals The identification of lack of referrals as such a commonly cited barrier (reported by 34.9%) is an important finding,
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Figure 2. Comparison in barrier reporting between academic and non-academic Physiatrists.
Figure 3. Comparison in barrier reporting between Physiatrists who follow less than 5 adults with CP versus those who follow more than 10 adults with CP. *Statistically significant inter-group difference (p ¼ 0.003).
particularly when added to the qualitative information presented that Physiatrists believe patients with CP and their physicians may be unaware of what a PM&R specialist could offer them. Previously published data suggest that there is a lack of adult practitioners willing to take on the care of adults with CP [7,9,21], but it is unclear if Physiatry has been identified or pursued as an appropriate ‘‘destination’’ for these patients by their care teams. An awareness of the most frequently offered physiatric services for adults with CP (as presented
above, including spasticity management, seating/orthosis/ mobility consultation, pain control, care coordination) may be all that is needed to encourage practitioners currently caring for these patients to consider making a referral to Physiatry on their behalf. Belief that these patients are already being followed adequately A significant proportion of Physiatrists (18.6%) felt that other physicians were already providing the needed services to adults
Caring for adults with CP
DOI: 10.3109/09638288.2015.1044031
with CP. However, Young et al. demonstrated in 2007 that only 28.6% of adults with CP had a primary care provider and that they had fewer specialist visits and more emergency room visits than children with CP [2]. They also noted that the data presented could not account for needed services that were not being provided, and as such may have underestimated the inadequacy of available services for this population [2]. This suggests that a significant proportion of adults with CP may not be receiving the medical care they require.
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Subgroup analysis In between-group comparisons, the only statistically significant difference identified was a lack of accessible resources, which was identified by 67.9% of Physiatrists with a caseload of more than 10 adults with CP, but by only 27.8% of those with a caseload of less than five. This could theoretically be related to a lack of referrals to Physiatry in centere that are exceptionally well resourced. Perhaps a more compelling potential explanation for this, however, is that those with greater experience in managing adults with CP have a greater awareness of the lack of services available for this population. The role of the General Practitioner Thirteen percent of all surveyed practicing Physiatrists felt that Family Physicians should assume the care of disability-related issues for individuals with CP once they reach adulthood. There is, however, evidence to suggest that patients and General Practitioners themselves commonly feel that generalists lack the needed expertise to effectively manage the multitude of issues presented by adults with complex needs [7,8,10,27]. The involvement of a General Practitioner in the care of adults with CP is crucial to provide preventative health care and to oversee care in general [17]. However, it is likely unrealistic to expect Family Physicians to manage the numerous CP-related complications that can arise (or persist) into adulthood, including mobility issues, spasticity, bowel and bladder dysfunction, feeding challenges and chronic pain. This is underscored by the fact that, of surveyed Physiatrists, 17.4% felt they had inadequate residency training in CP and 16.3% felt that there was inadequate continuing medical education to maintain sufficient expertise in this area. If a significant proportion of Physiatrists, who are specialists in providing disability-related care, feel that it is difficult to maintain expertise in this clinical realm, it is reasonable to think that Family Physicians may struggle with this to an even greater degree. Strengths and limitations To our knowledge, this is the first study intended to provide a general description of practice patterns relating to adults with CP among Canadian Physiatrists, and to potentially provide a basis for future research into the role of Physiatry in the care of this population. It has several limitations. The study was conducted using a survey of Canadian Physiatrists that was developed by the authors, and though it is based upon a review of the available evidence, it may have omitted important questions. Also, survey data are inherently subjective to selection bias, as responding to the questionnaire was entirely voluntary. Finally, these results reflect the perceptions of Canadian Physiatrists about their own practices rather than objective data on numbers of and reasons for clinic visits made by adults with CP to Physiatrists, which may provide more reliable data about true Physiatric practice patterns in the care of adults with CP. Further research is needed to more fully delineate the role of the Physiatrist in caring for this complex patient population and to determine if an increase in regular
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service provision by Physiatrists would improve medical and functional outcomes for adults with CP.
Conclusion CP is the most common disability of childhood onset [1], and the vast majority of patients survive well into adulthood [3,4]. Pediatric practitioners and patients have often reported significant difficulties in finding qualified, interested adult practitioners to care for those with CP once they reach adulthood. This study demonstrates that, despite the size and significant rehabilitative needs of this population, most Physiatrists practicing in Canada are serving very few adults with CP. Interestingly, the majority of the same Physiatrists feel that PM&R is the most appropriate service to take over the regular care of disability-related issues for these patients following their discharge from pediatric services. Many barriers to involvement in the care of adults with CP were identified and importantly appear to be amenable to change. These include lack of accessible resources (i.e. equipment, social work, funded therapy) and lack of referrals, suggesting that Physiatrists may be an untapped resource in the management of adults with CP. Stevenson commented that in the care of this population, there appears to be an ‘unplugged gap for what might be called a ‘‘community disability physician’’’ [19]. With expert training in the management of many of the symptoms experienced by adults with CP (spasticity, mobility issues, neurogenic bowel/ bladder, pain, etc.), Physiatrists seem ideally suited to rise to the challenge and ‘‘plug the gap’’.
Declaration of interest The authors report no declarations of interest.
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