Journal of Pediatric Nursing (2015) 30, 677–683
Multidisciplinary Support for Healthcare Transitioning Across an Urban Healthcare Network Lynn F. Davidson MD a,b,⁎, Maya Doyle LCSW-R, PhD a,c , Ellen J. Silver PhD a,b a
Pediatrics, Children's Hospital at Montefiore, Bronx, NY Albert Einstein College of Medicine, Bronx, NY c Department of Social Work, Quinnipiac University, Hamden, CT b
Received 28 February 2015; revised 11 May 2015; accepted 11 May 2015
Key words: Physician's practice patterns; Youth; Special health care needs; Transition to adulthood; Nursing; Social work
Background A successful transition from pediatric to adult oriented health care is a vital process in maintaining a patient-centered medical home for youth with special health care needs (YSHCNs). We assessed practices of pediatric providers who transition YSCHNs to adult-oriented medical care in a large urban academic healthcare network. Methods: A cross-sectional Web-based survey was distributed to 376 generalist and subspecialist pediatric providers. Survey assessed provider-reported utilization of 11 Essential Steps adapted from the 2002 Consensus Statement on Health Care Transitions for YSHCNs, and recent transitioning literature. Compliance score (CS11) was calculated as a sum of steps completed. Additional items assessed knowledge of transitioning literature and respondent demographics. Results: Survey achieved a 28% response rate (n = 105), of whom 84 reported assisting transitioning YSHCNs. Only 16.7% of these respondents were compliant with 7 or more of the 11 Essential Steps. Respondents who identified social work or nursing were more likely to have CS11 scores ≥ 7 compared to those without and were more likely to be compliant with specific steps. Conclusion: We found limited and incomplete utilization of recommended transitioning steps for YSHCNs by pediatric providers within a large urban healthcare network. Access to support from social work and nursing was associated with greater utilization of specific recommended steps, and with more optimal compliance. Further research needs to assess the transitioning practices of all members of the multidisciplinary team and whether operationalizing healthcare transition for YSHCNs as a multidisciplinary activity impacts the transitioning process and patient outcomes. © 2015 Elsevier Inc. All rights reserved.
Background EACH YEAR IN the United States, approximately 750,000 youth with special health care needs (YSHCNs) survive to adulthood (National Collaborative on Workforce & Disability for Youth, 2012). Successful transition from pediatric to adult oriented health care is a vital process in ⁎ Corresponding author: Lynn F. Davidson, M.D. E-mail address: [email protected]. http://dx.doi.org/10.1016/j.pedn.2015.05.011 0882-5963/© 2015 Elsevier Inc. All rights reserved.
maintaining a patient-centered medical home’s commitment to providing comprehensive, coordinated family-centered care for youth with special health care needs (American Academy of Pediatrics et al., 2011). A multidisciplinary approach is a key component in successful transition from pediatric to adult oriented health care. A 2013 Institute of Medicine report reviewed the challenges of healthcare transitioning for young adults and noted the decreased access to care and insurance coverage in this age group.
678
L.F. Davidson et al.
The report states that, “a culturally competent health care system that provides access to at least annual visits and medical homes for all young adults should include transition care to help young adults navigate the health care system” (Stroud, Mainero, Olson, & Board on Youth Children and Families, 2013). Best practice recommendations for how clinicians should assist in the healthcare transition process have advanced over the last 25 years, from the US Surgeon General’s conference in 1989 (Koop, 1989) to the 2002 consensus statement (American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, & American Society of Internal Medicine, 2002) and, more recently, the 2011 Clinical Report (American Academy of Pediatrics et al., 2011). The Clinical Report provides a stepwise algorithm to assist the clinician in the transition process for youth with and without special health care needs, starting when youth are in early adolescence. The 2002 guidelines (which included 6 “Critical First Steps”) and a review of recent literature were utilized in a prior study (Davidson et al., 2015) to create the “11 Essential Steps” (Table 1) to assess utilization of recommended provider practices related to healthcare transitioning for youth with and without special healthcare needs. Prior research has assessed provider practices related to preparing YSCHN for healthcare transition (Burke, Spoerri, Price, Cardosi, & Flanagan, 2008; Crowley, Wolfe, Lock, & McKee, 2011; Davidson et al., 2015; McManus, Fox, O’Connor, & MacKinnon, 2008). Challenges of provider adherence to recommended transitioning practices have also been identified (Forbes et al., 2014) which include “difficulty letting go” by patients, families, settings, and providers; poor uptake of self-care or transition plans; and patients and families remaining in crisis which makes transfer of care inappropriate. It has been suggested that a multidisciplinary approach to healthcare transitioning for YSHCNs improves outcomes (Betz & Redcay, 2005; Rearick, 2007). However, it is unknown whether the Table 1
availability of multidisciplinary support, including nursing and social work, improves provider practices related to healthcare transitioning for YSHCNs. The overall goal of this exploratory study was to assess the current practices of generalist and subspecialty pediatric providers within a large urban academic healthcare network as they transition youth with special health care needs to adult oriented health care. In addition, we assessed whether institutional resources, including support from multiple members of the multidisciplinary team, were utilized by pediatric providers and if such resources were associated with greater utilization of recommended transition practices.
Methods Data Collection A cross-sectional Web-based survey was distributed via SurveyMonkey® to 376 pediatric providers (279 generalists, which include primary care, family medicine, and school health providers and 97 subspecialists) affiliated with a large urban academic healthcare network, which serves approximately 36,000 youth aged 12 to 21 years in its outpatient practices each year. The survey was voluntary and included a consent statement; all questions were optional. It was distributed through departmental emails and practice administrators in May 2013; monthly email reminders were sent in June, July, and August; data collection was closed in September 2013. IRB approval was obtained from the Einstein Human Research Protection Program at Montefiore Medical Center as an extension of investigator’s previous NYS study (Davidson et al., 2015). A copy of the survey instrument is available upon request.
Survey Development This survey was adapted from a prior survey used to assess transition practices of American Academy of Pediatrics members across New York State (Davidson
11 Essential steps, percentages reporting utilization, and comparison of subspecialists vs. generalists.
11 Essential steps 1. 2.
Identify core knowledge and skills Have a designated pediatrician/or member of the practice who coordinates transition 3. Identify an adult medical provider 4. Create a portable medical summary 5. Create an emergency plan 6. Create a transition plan 7. Assist with ongoing insurance coverage 8. Discuss the legal aspects of transition 9. Discuss realistic future goals with the adolescent alone 10. Discuss realistic future goals with the adolescent and family 11. Provide ongoing routine adolescent health care ⁎ Indicates significance at p b .05.
Total Sub-specialists Generalists p value (n = 84) (n = 49) (n = 35)
Odds Ratio (95% CI)
38% 19%
49% 27%
23% 9%
p b .02 ⁎ 3.2 (1.23, 8.5 p b .04 ⁎ 3.9 (1.01, 14.75)
75% 46% 8% 38% 18% 30% 31% 55% 46%
78% 59% 12% 49% 22% 31% 33% 57% 33%
71% 29% 3% 23% 11% 29% 29% 51% 66%
p p p p p p p p p
b b b b b b b b b
.53 .01 ⁎ 3.6 (1.43,9.18) .125 .02 ⁎ 3.2 (1.23, 8.53) .19 .84 .69 .60 .01 ⁎ 1.3 (.53, 3.01)
Multidisciplinary Support for Healthcare Transitioning et al., 2015), which was developed from an extensive review of the literature. The 6 “critical first steps” from the 2002 consensus statement (American Academy of Pediatrics et al., 2002) and items from a 2008 survey (McManus et al., 2008) were used as the basis for development of “11 Essential Steps” for the New York State (NYS) survey. Additional questions within the NYS survey included presence of a written transition policy (Burke et al., 2008), the age to start transition planning (American Academy of Pediatrics et al., 2002; Burke et al., 2008; McManus et al., 2008; White & Hackett, 2009), details of transition support services (American Academy of Pediatrics et al., 2002; Burke et al., 2008; McManus et al., 2008; White & Hackett, 2009), and barriers to transition (McManus et al., 2008; Okumura et al., 2010). The current survey focused on the utilization of 11 Essential Steps (Table 1), and also gathered data on provider and setting characteristics, use of institution-specific resources, and familiarity with transitioning literature. Openended text-boxes at the end of survey questions also allowed for collection of brief qualitative data.
679 respondents included providers from the following areas: Hematology–Oncology, Endocrinology, Infectious Disease/ HIV, Gastroenterology, Nephrology, Cardiology, Rheumatology, Adolescent Medicine, Allergy/Immunology, Neurology, Developmental/Behavior, Pulmonary, and Urology.
Utilization of 11 Essential Steps for Healthcare Transitioning Table 1 shows the percentages of respondents reporting utilization of each of the 11 Essential Steps, and utilization by subspecialists and generalists. Two steps were completed by a majority of all respondents: 75% of pediatric providers identified an adult-oriented medical provider to whom they would transfer their transitioning patients and 55% said they discussed future goals with the adolescents and their families. Less than 20% of providers reported creating an emergency plan (8%), assisting with ongoing insurance coverage (18%), or having a designated member of the practice who coordinates transition (19.5%). Subspecialists were more likely to complete 4 specific Steps: identifying core knowledge and skills, have a designated member of the
Data Analysis Respondents who provided patient care to youth older than 12 years old and who assisted YSHCN’s with transition to adult-oriented practices were included in this analysis. Descriptive statistics were calculated for provider and setting characteristics, resource use, and utilization of each of the 11 Essential Steps (Table 1). The association of specific steps and provider characteristics was tested with chi square analysis. A compliance score (CS11) was calculated for each respondent as the sum (0–11) with one point assigned to each of the 11 Essential Steps utilized. The respondents’ CS11 scores were dichotomized into b 7 vs. ≥ 7, equivalent to 85th percentile of scores, to indicate optimal and suboptimal compliance with utilization of the identified steps. The association of optimal and suboptimal CS11 score with respondent and setting characteristics and use of resources was tested with chi square analyses. Odds ratios (ORs) along with their 95th percentile confidence intervals (CIs) also were calculated. A two-tailed alpha of 0.05 was used to denote statistical significance.
Results Demographic Characteristics The survey achieved a 28% response rate (n = 105), of whom 84 reported providing patient care to youth older than 12 and assistance in transitioning YSHCNs. Of these 84 respondents, 60 (71%) were female, all were more than 30 years old, and 32 (38%) were 50 years old or older. Of all respondents assisting YSHCNs (n = 84), 54 (64%) reported assisting with transition for youth without as well as with special health care needs; another 30 (36%) reported assisting YSHCNs only. Also, 58 respondents (69%) reported practicing in hospital based settings, while the rest practiced in community based or school based settings; 49 (58%) were subspecialists (Table 2). Subspecialist
Table 2
Respondent characteristics.
Area of practice Gender Age group Experience (years)
Type of practice
Percentage of patients 12 or older
Read transition statements
Uses standard forms Uses community resources Social work provides assistance Nursing a provides assistance
Sub-specialist (n = 49) Generalist (n = 35) Male (n = 21) Female (n = 60) 30–49 years (n = 47) 50 + years (n = 32) b 1 (n = 5) 1–10 (n = 25) 11–20 (n = 24) N 20 (n = 29) Hospital-based academic (n = 58) School–community–other (n = 26) 1–20% (n = 11) 21–40% (n = 32) 41–60% (n = 25) 61–80% (n = 6) 81–100% (n = 9) Neither (n = 50) 2002 only (n = 11) 2011 only (n = 10) Both (n = 13) Yes (n = 10) No (n = 72) Yes (n = 9) No (n = 74) Yes (n = 57) No (n = 27) Yes (n = 34) No (n = 50)
Some providers did not respond to all demographic questions. a Registered nurses and/or nurse practitioners.
680
L.F. Davidson et al.
practice, creating a portable medical summary, and creating a transition plan. Generalists were more likely to provide ongoing routine adolescent care. Overall, only 16.7% of respondents who reported assisting YSHCNs (n = 84) demonstrated optimal compliance, i.e. scoring ≥ 7 on the CS11; no provider was compliant with all 11 steps. Subspecialists had higher rates of optimal compliance scores (CS11 ≥ 7) than generalists (24.5 % vs. 5.7%; p b .02, OR = 5.35 [95% CI = 1.12, 25.69]) (Table 3). Providers who reported that N 80% of their patients were 12 or older (44% vs. 12%, p b .02, OR = 5.78 [95% CI = 1.31, 25.59]), and those who used standard forms (40% vs. 14%, p b .04, OR = 4.13 [95% CI = .99, 17.28]) were more likely to score ≥ 7 on the CS11. It should be noted, however, that only 10 (12%) of all respondents assisting YSHCNs reported using standardized forms as part of transition planning. Responses to openended questions indicated that some providers input a note or letter into electronic medical record at time of transition; some subspecialists also noted that their team had created their own transitioning tool based on a variety of existing tools. Provider age, gender, years of experience, practice setting, and use of community resources were not associated with compliance.
Multidisciplinary Support and Utilization of Eleven Essential Steps for Healthcare Transitioning Both social work support and nursing support with transition were associated with a higher likelihood of utilization of at least 7 of the 11 Essential Steps (Table 3). Providers who identified nursing (RN or NP) as a transition resource were more likely to report that they: identify patient’s core knowledge and skills (53% vs. 28%, p b .02, OR = 2.9 [95% CI = 1.16, 7.21]); have a designated member of practice (29% vs. 14%, p b .05, OR = 3.1 [95% CI .99, 9.44]); create a portable medical summary Table 3
(62% vs. 36%, p b .02, OR = 2.9 [95% CI = 1.67, 7.07]); and assist with ongoing insurance coverage (29% vs. 10%, p b .02, OR = 3.8 [95% CI = 1.15, 12.23]), compared to those without nursing involvement. Providers who identified social work as a transition resource were more likely to report that they: identify patient’s core knowledge and skills (51% vs. 11%, p b .001, OR = 8.3 [95% CI = 2.24, 30.64]); assist with ongoing insurance coverage (25% vs. 4%, p b .02, OR = 8.5 [95% CI = 1.05, 68.19]); and discuss legal aspects of healthcare (39% vs. 11%, p b .01, OR = 5.0 [95% CI = 1.35, 18.7]) compared to those who did not get support from social work. Similarly, other resources within the institution (child life therapists, parent representatives, call center, registration and billing staff) were rarely reported as utilized by providers and were not significantly associated with compliance scores.
Discussion Despite nearly two decades of recommendations and policy statements, smooth transitions to adult oriented health care do not occur regularly or seamlessly for youth with special health care needs (Prior, McManus, White, & Davidson, 2014). Our findings, from a large urban academic healthcare system, show that the majority of providers report assisting YSHCN in identifying an adult provider and discussing future goals with the adolescent and family. However, our study suggests limited and incomplete utilization of recommended steps in healthcare transition for YSHCNs. Pediatric subspecialists demonstrated somewhat greater compliance than generalists, but overall, utilization of recommended steps was incomplete. Difficulties in adherence to practice guidelines have been described in relation to asthma clinical care guidelines (Cabana, Rand, Becher, & Rubin, 2001) and pediatric nephrology transitioning guidelines (Forbes et al., 2014).
Providers with CS11 score ≥ 7 by selected variables.
Category
Participant Variable
% with ≥ 7 on CS11
Provider area of practice
Sub-specialist (n = 49) Generalist (n = 35) 30–49 years (n = 47) 50 + years (n = 32) 1–20% (n = 11) 21–40% (n = 32) 41–60% (n = 25) 61–80% (n = 6) 81–100% (n = 9) Yes (n = 10) No (n = 72) Yes (n = 57) No (n = 27) Yes (n = 34) No (n = 50)
24.5% 5.7% 23.4% 9.4% 9.1% 12.5% 16.0% 0.0% 44.4% 40.0% 13.9% 24.6% 0.0% 29.4% 8.0%
Provider age % patients 12 or older a
Uses standard forms Social work provides assistance Nursing b provides assistance a b
Those having 80% or more of their patients ≥ 12 compared to all other groups (p b .05). Registered nurses and/or nurse practitioners.
Sig. p b .02 p = .109
p b .118 p b .04 p b .005 p b .01
Multidisciplinary Support for Healthcare Transitioning Based on a literature review, Cabana et al. (1999) developed a framework to consider provider barriers to guideline adherence, which included lack of awareness, lack of familiarity, lack of agreement, lack of self-efficacy, lack of outcome expectancy, the inertia of previous practice, and external barriers. A number of subspecialty organizations have developed guidelines or consensus statements around transitioning practices and transfer to adult oriented health care for diseases diagnosed in childhood (Watson, Harden, et al., 2011; Webb et al., 2010; Yankaskas, Marshall, Sufian, Simon, & Rodman, 2004). It remains unclear whether improving provider compliance with consensus recommendations or guidelines results in better patient outcomes following healthcare transition. In this study, nursing involvement and social work involvement were associated with optimal compliance by physicians with recommended steps when transitioning YSHCNs to adult oriented health care, and great utilization of certain specific steps. Across institutions, a variety of structured transition programs have been created in order to facilitate the transition process for YSHCNs (Betz, 2013; Crowley et al., 2011; Flume, Taylor, Anderson, Gray, & Turner, 2004; Jordan & McDonagh, 2007; Woodward, Swigonski, & Ciccarelli, 2012). In a review of 122 transition programs, 77% provide case management, 40% of those by nurses, and 45% by social workers (Betz, 2013). A quality improvement study on transition of youth in a primary care setting emphasized the importance of “senior leadership support not only from medicine but also from nursing and social work”(McManus et al., 2015). The nursing role in transition has been described as a “key worker” or as a transition coordinator (Betz & Redcay, 2005; Rearick, 2007). Nursing is especially well suited to leadership in this role due to a framework of practice that encompasses an ecological approach (Wang, McGrath, & Watts, 2010), which includes the biological, developmental, behavioral and psychosocial aspects of care for YSHCNs and their families (Betz, 2013), along with specialized clinical knowledge regarding assessment, education, intervention and advocacy for those living with a special healthcare need and its potential complications over time (Betz & Redcay, 2005). Nursing presence in development of healthcare transitioning models (Betz, 2013), increased nursing education on the needs of youth and emerging adults with special healthcare needs (Osterkamp, Costanzo, Ehrhardt, & Gormley, 2013), and increasing disciplinary organization around healthcare transitioning could maximize the outcomes and the experience of care for this population as they enter adulthood and adult oriented health care settings. Social work competencies in utilizing a developmental and biopsychosocial framework (Wood, 1995), awareness of local, state, and national resources, and the importance of human relationships (National Association of Social Workers, 2008) have been identified as fundamental to a successful process of healthcare transitioning. Social
681 workers may serve as transition “brokers” (Shanske, Arnold, Carvalho, & Rein, 2012), consultants, or coordinators. While having a dedicated member of the team to coordinate transition is recommended across the literature, involvement of nursing or social work in this role alone does not address the need for comprehensive and coordinated care in a patient-centered medical home. The transition process requires involvement and investment by the entire multi-disciplinary team, who shares the goals of a planned and purposeful transition.
Strengths and Limitations The response rate to the survey was 28% was low, although response rates under 20% to Web-based clinician surveys are not uncommon (Dykema, Jones, Piche, & Stevenson, 2013). Numbers of providers from unique subspecialties were quite small and analysis was not undertaken to assess difference in provider practice by subspecialty; a wide breadth of subspecialties was represented by respondents. If the respondents self-selected because they are the providers most invested in the transitioning process, it could mean that our results overestimated compliance. This survey was limited to physician providers and does not include the perspective of the multidisciplinary team as other studies have (Fernandes et al., 2010). This study assessed data collected from a large urban academic healthcare network, reflecting current protocols and population served, and therefore may not be generalizable to all healthcare settings. However, it does highlight the need not only for development of and adherence with guidelines, but for utilizing guidelines and protocols consistently across an agency or institution. These findings reflect only the reported practices of physicians; other members of the multidisciplinary team may recognize and utilize resources differently.
Conclusion Instead of fostering maximal independence, the lack of an adequate transition process may result in a jarring transfer of care and loss/interruption of the Medical Home, and encourage inappropriate use of services in the community and an extended time receiving care in developmentallyinappropriate pediatric settings. We found limited and incomplete utilization of recommended transitioning steps for YSHCNs by pediatric providers, both generalists and subspecialists, within a single urban healthcare network that serves a large number of well adolescents and those with special healthcare needs. Nursing and social work involvement was associated with greater utilization of recommended steps for healthcare transitioning for YSHCNs. The assignment of subspecialty-specific social workers and a higher prevalence of nurse-educators and nurse-practitioners within subspecialty teams within the setting of a children’s hospital may explain the variance between outpatient primary care and subspecialty providers’ practices. The need for a truly interprofessional and comprehensive approach to healthcare, as recommended by the patient-centered medical home
682 model, suggests a need for greater availability of these crucial team members (Lemly, Weitzman, & O’Hare, 2013; McManus et al., 2015). Within the setting of this study, there is no formal transitioning program or model, as has been established at other institutions (Betz, 2013; Mennito & Clark, 2010; Watson, Parr, et al., 2011). Currently, transitioning guidelines and workflows are being agreed upon and disseminated across the Pediatrics, Family Medicine and Internal Medicine departments, and across primary care and family medicine practices. A multidisciplinary transition workgroup meets quarterly within the medical center. In 2013–2014, the primary care practices received Patient Centered Medical Home Certification Level 3 (National Committee for Quality Assurance, 2013); one of the foci of this initiative is to improve transition and transfer to the adult-oriented practices (Lemly et al., 2013). A recently funded quality improvement project will unite primary and subspecialty care planning through the use of transition navigators for youth with either sickle cell disease or asthma, which should advance and improve the quality, experience and efficiency of transition and transfer for YSHCNs and their families. Some subspecialties have independently created transition protocols and partnered with adult-oriented specialists. Plans are also under way to include standardized transitioning documentation into the electronic medical record as it is adopted by the institution. These efforts aim to increase consensus around and improve utilization of transitioning recommendations. Further research needs to assess the transition practices of all members of the multidisciplinary team (including the use of standardized tools and the electronic medical record) and whether operationalizing healthcare transition for YSHCNs as a multidisciplinary activity impacts the transitioning process and patient outcomes. Next steps in research and quality improvement at our institution also include assessing practices and barriers of adult-oriented providers who are accepting the care of YSHCNs, and providing additional training to pediatric and adult-oriented providers and multidisciplinary team members around YSHCNs and transitioning.
Acknowledgments Peter F. Belamarich MD; Frederick J. Kaskel, MD, PhD; Suzette Oyeku, MD, MPH; Rhonda Lieberman, LCSW-R; and the CHAM Division of General Pediatrics Investigator Group for their assistance in preparation of this manuscript.
References American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, & American Society of Internal Medicine (2002). A consensus statement on health care transitions for young adults with special health care needs. Pediatrics, 110, 1304–1306. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, Transitions Clinical Report Authoring Group, Cooley, W. C., & Sagerman, P. J. (2011).
L.F. Davidson et al. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 128, 182–200, http://dx.doi.org/10.1542/ peds.2011-0969. Betz, C. L. (2013). Health care transition for adolescents with special healthcare needs: Where is nursing? Nursing Outlook, 61, 258–265. Betz, C. L., & Redcay, G. (2005). Dimensions of the transition service coordinator role. Journal for Specialists in Pediatric Nursing, 10, 49–59. Burke, R., Spoerri, M., Price, A., Cardosi, A. M., & Flanagan, P. (2008). Survey of primary care pediatricians on the transition and transfer of adolescents to adult health care. Clinical Pediatrics, 47, 347–354, http://dx.doi.org/10.1177/0009922807310938. Cabana, M. D., Rand, C. S., Becher, O. J., & Rubin, H. R. (2001). Reasons for pediatrician nonadherence to asthma guidelines. Archives of Pediatrics & Adolescent Medicine, 155, 1057–1062. Cabana, M. D., Rand, C. S., Powe, N. R., Wu, A. W., Wilson, M. H., Abboud, P. -A. C., et al. (1999). Why don't physicians follow clinical practice guidelines?: A framework for improvement. JAMA, 282, 1458–1465. Crowley, R., Wolfe, I., Lock, K., & McKee, M. (2011). Improving the transition between paediatric and adult healthcare: A systematic review. Archives of Disease in Childhood, 96, 548–553, http://dx.doi.org/10. 1136/adc.2010.202473. Davidson, L. F., Chhabra, R., Cohen, H. W., Lechuga, C., Diaz, P., & Racine, A. (2015). Pediatricians transitioning practices, youth with special health care needs in New York State. Clinical Pediatrics, http:// dx.doi.org/10.1177/0009922815573940. Dykema, J., Jones, N. R., Piche, T., & Stevenson, J. (2013). Surveying clinicians by web: Current issues in design and administration. Evaluation & the Health Professions, 36, 352–381, http://dx.doi.org/ 10.1177/0163278713496630. Fernandes, S., Fishman, L., O’Sullivan-Oliveira, J., Ziniel, S., Melvin, P., Khairy, P., et al. (2010). Current practices for the transition and transfer of patients with a wide spectrum of pediatric-onset chronic diseases: Results of a clinician survey at a free-standing pediatric hospital. International Journal of Child and Adolescent Health, 3, 507–515. Flume, P. A., Taylor, L. A., Anderson, D. L., Gray, S., & Turner, D. (2004). Transition programs in cystic fibrosis centers: Perceptions of team members. Pediatric Pulmonology, 37, 4–7, http://dx.doi.org/10.1002/ ppul.10391. Forbes, T. A., Watson, A. R., Zurowska, A., Shroff, R., Bakkaloglu, S., Vondrak, K., et al. (2014). Adherence to transition guidelines in European paediatric nephrology units. Pediatric Nephrology, 1–8. Jordan, A., & McDonagh, J. (2007). Recognition of emerging adulthood in UK rheumatology: The case for young adult rheumatology service developments. Rheumatology, 46, 188–191. Koop, C. (1989). Executive summary. Growing up and getting medical care: Youth with special health care needs. Retrieved from: http://profiles. nlm.nih.gov/ps/access/NNbczs.pdf Lemly, D. C., Weitzman, E. R., & O’Hare, K. (2013). Current opinion. Advancing healthcare transitions in the medical home: Tools for providers, families and adolescents with special healthcare needs. Current Opinion in Pediatrics, 25, 439–446. McManus, M. A., Fox, H., O’Connor, K., & MacKinnon, J. (2008). Pediatric perspectives and practices on transitioning adolescents with special needs to adult health care. Fact sheet no.6. From http://www.medicalhomeinfo. org/downloads/pdfs/FactsheetTransitioningAdolescents-McManus.pdf. McManus, M. A., White, P., Barbour, A., Downing, B., Hawkins, K., Quion, N., et al. (2015). Pediatric to adult transition: A quality improvement model for primary care. Journal of Adolescent Health, 56, 73–78. Mennito, S. H., & Clark, J. K. (2010). Transition medicine: A review of current theory and practice. Southern Medical Journal, 103, 339–342, http://dx.doi.org/10.1097/SMJ.0b013e3181d32356. National Association of Social Workers (2008). Code of Ethics of the National Association of Social Workers. Retrieved from: http://www. socialworkers.org/pubs/code/code.asp.
Multidisciplinary Support for Healthcare Transitioning National Collaborative on Workforce & Disability for Youth (2012). Policy brief: Transition’s missing link: Health care transition. (5). Retrieved from: http://www.ncwd-youth.info/sites/default/files/policy-brief05_0.pdf. National Committee for Quality Assurance (2013). Clinician search. Retrieved from http://recognition.ncqa.org/. Okumura, M. J., Kerr, E. A., Cabana, M. D., Davis, M. M., Demonner, S., & Heisler, M. (2010). Physician views on barriers to primary care for young adults with childhood-onset chronic disease. Pediatrics, 125, e748–e754, http://dx.doi.org/10.1542/peds.2008-3451. Osterkamp, E. M., Costanzo, A. J., Ehrhardt, B. S., & Gormley, D. K. (2013). Transition of care for adolescent patients with chronic illness: Education for nurses. The Journal of Continuing Education in Nursing, 44, 38–42. Prior, M., McManus, M. A., White, P., & Davidson, L. (2014). Measuring the “triple aim” in transition care: A systematic review. Pediatrics, 134, e1648–e1661. Rearick, E. (2007). Enhancing success in transition service coordinators: Use of transformational leadership. Professional Case Management, 12, 283–287. Shanske, S., Arnold, J., Carvalho, M., & Rein, J. (2012). Social workers as transition brokers: Facilitating the transition from pediatric to adult medical care. Social Work in Health Care, 51, 279–295, http://dx.doi. org/10.1080/00981389.2011.638419. Stroud, C., Mainero, T., Olson, S., & Board on Youth Children and Families (2013). Improving the health, safety, and well-being of young adults. Workshop summary: Institute of Medicine and National Research Council of the National Academies. National Academies Press.
683 Wang, G., McGrath, B. B., & Watts, C. (2010). Health care transitions among youth with disabilities or special health care needs: An ecological approach. Journal of Pediatric Nursing, 25, 505–550, http://dx.doi.org/ 10.1016/j.pedn.2009.07.003. Watson, A. R., Harden, P., Ferris, M., Kerr, P. G., Mahan, J., & Ramzy, M. F. (2011a). Transition from pediatric to adult renal services: A consensus statement by the International Society of Nephrology (ISN) and the International Pediatric Nephrology Association (IPNA). Pediatric Nephrology, 26, 1753–1757. Watson, A. R., Parr, J. R., Joyce, C., May, C., & Le Couteur, A. S. (2011b). Models of transitional care for young people with complex health needs: A scoping review. Child: Care, Health and Development, 37, 780–791, http://dx.doi.org/10.1111/j.1365-2214.2011.01293.x. Webb, N., Harden, P., Lewis, C., Tizzard, S., Walsh, G., Wray, J., et al. (2010). Building consensus on transition of transplant patients from paediatric to adult healthcare. Archives of Disease in Childhood, 95, 606–611, http://dx.doi.org/10.1136/adc.2009.176255. White, P. H., & Hackett, P. (2009). On the threshold to the adult medical home: Care coordination in transition. Pediatric Annals, 38, 513–520, http://dx.doi.org/10.3928/00904481-20090820-11. Wood, B. L. (1995). A developmental biopsychosocial approach to the treatment of chronic illness in children and adolescents. Woodward, J. F., Swigonski, N. L., & Ciccarelli, M. R. (2012). Assessing the health, functional characteristics, and health needs of youth attending a noncategorical transition support program. Journal of Adolescent Health, 51, 272–278. Yankaskas, J. R., Marshall, B. C., Sufian, B., Simon, R. H., & Rodman, D. (2004). Cystic fibrosis adult care: Consensus conference report. Chest, 125, 1S–39S, http://dx.doi.org/10.1378/chest.125.1_suppl.1S.
Multidisciplinary Support for Healthcare Transitioning Across an Urban Healthcare Network Lynn F. Davidson MD a,b,⁎, Maya Doyle LCSW-R, PhD a,c , Ellen J. Silver PhD a,b a
Pediatrics, Children's Hospital at Montefiore, Bronx, NY Albert Einstein College of Medicine, Bronx, NY c Department of Social Work, Quinnipiac University, Hamden, CT b
Received 28 February 2015; revised 11 May 2015; accepted 11 May 2015
Key words: Physician's practice patterns; Youth; Special health care needs; Transition to adulthood; Nursing; Social work
Background A successful transition from pediatric to adult oriented health care is a vital process in maintaining a patient-centered medical home for youth with special health care needs (YSHCNs). We assessed practices of pediatric providers who transition YSCHNs to adult-oriented medical care in a large urban academic healthcare network. Methods: A cross-sectional Web-based survey was distributed to 376 generalist and subspecialist pediatric providers. Survey assessed provider-reported utilization of 11 Essential Steps adapted from the 2002 Consensus Statement on Health Care Transitions for YSHCNs, and recent transitioning literature. Compliance score (CS11) was calculated as a sum of steps completed. Additional items assessed knowledge of transitioning literature and respondent demographics. Results: Survey achieved a 28% response rate (n = 105), of whom 84 reported assisting transitioning YSHCNs. Only 16.7% of these respondents were compliant with 7 or more of the 11 Essential Steps. Respondents who identified social work or nursing were more likely to have CS11 scores ≥ 7 compared to those without and were more likely to be compliant with specific steps. Conclusion: We found limited and incomplete utilization of recommended transitioning steps for YSHCNs by pediatric providers within a large urban healthcare network. Access to support from social work and nursing was associated with greater utilization of specific recommended steps, and with more optimal compliance. Further research needs to assess the transitioning practices of all members of the multidisciplinary team and whether operationalizing healthcare transition for YSHCNs as a multidisciplinary activity impacts the transitioning process and patient outcomes. © 2015 Elsevier Inc. All rights reserved.
Background EACH YEAR IN the United States, approximately 750,000 youth with special health care needs (YSHCNs) survive to adulthood (National Collaborative on Workforce & Disability for Youth, 2012). Successful transition from pediatric to adult oriented health care is a vital process in ⁎ Corresponding author: Lynn F. Davidson, M.D. E-mail address: [email protected]. http://dx.doi.org/10.1016/j.pedn.2015.05.011 0882-5963/© 2015 Elsevier Inc. All rights reserved.
maintaining a patient-centered medical home’s commitment to providing comprehensive, coordinated family-centered care for youth with special health care needs (American Academy of Pediatrics et al., 2011). A multidisciplinary approach is a key component in successful transition from pediatric to adult oriented health care. A 2013 Institute of Medicine report reviewed the challenges of healthcare transitioning for young adults and noted the decreased access to care and insurance coverage in this age group.
678
L.F. Davidson et al.
The report states that, “a culturally competent health care system that provides access to at least annual visits and medical homes for all young adults should include transition care to help young adults navigate the health care system” (Stroud, Mainero, Olson, & Board on Youth Children and Families, 2013). Best practice recommendations for how clinicians should assist in the healthcare transition process have advanced over the last 25 years, from the US Surgeon General’s conference in 1989 (Koop, 1989) to the 2002 consensus statement (American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, & American Society of Internal Medicine, 2002) and, more recently, the 2011 Clinical Report (American Academy of Pediatrics et al., 2011). The Clinical Report provides a stepwise algorithm to assist the clinician in the transition process for youth with and without special health care needs, starting when youth are in early adolescence. The 2002 guidelines (which included 6 “Critical First Steps”) and a review of recent literature were utilized in a prior study (Davidson et al., 2015) to create the “11 Essential Steps” (Table 1) to assess utilization of recommended provider practices related to healthcare transitioning for youth with and without special healthcare needs. Prior research has assessed provider practices related to preparing YSCHN for healthcare transition (Burke, Spoerri, Price, Cardosi, & Flanagan, 2008; Crowley, Wolfe, Lock, & McKee, 2011; Davidson et al., 2015; McManus, Fox, O’Connor, & MacKinnon, 2008). Challenges of provider adherence to recommended transitioning practices have also been identified (Forbes et al., 2014) which include “difficulty letting go” by patients, families, settings, and providers; poor uptake of self-care or transition plans; and patients and families remaining in crisis which makes transfer of care inappropriate. It has been suggested that a multidisciplinary approach to healthcare transitioning for YSHCNs improves outcomes (Betz & Redcay, 2005; Rearick, 2007). However, it is unknown whether the Table 1
availability of multidisciplinary support, including nursing and social work, improves provider practices related to healthcare transitioning for YSHCNs. The overall goal of this exploratory study was to assess the current practices of generalist and subspecialty pediatric providers within a large urban academic healthcare network as they transition youth with special health care needs to adult oriented health care. In addition, we assessed whether institutional resources, including support from multiple members of the multidisciplinary team, were utilized by pediatric providers and if such resources were associated with greater utilization of recommended transition practices.
Methods Data Collection A cross-sectional Web-based survey was distributed via SurveyMonkey® to 376 pediatric providers (279 generalists, which include primary care, family medicine, and school health providers and 97 subspecialists) affiliated with a large urban academic healthcare network, which serves approximately 36,000 youth aged 12 to 21 years in its outpatient practices each year. The survey was voluntary and included a consent statement; all questions were optional. It was distributed through departmental emails and practice administrators in May 2013; monthly email reminders were sent in June, July, and August; data collection was closed in September 2013. IRB approval was obtained from the Einstein Human Research Protection Program at Montefiore Medical Center as an extension of investigator’s previous NYS study (Davidson et al., 2015). A copy of the survey instrument is available upon request.
Survey Development This survey was adapted from a prior survey used to assess transition practices of American Academy of Pediatrics members across New York State (Davidson
11 Essential steps, percentages reporting utilization, and comparison of subspecialists vs. generalists.
11 Essential steps 1. 2.
Identify core knowledge and skills Have a designated pediatrician/or member of the practice who coordinates transition 3. Identify an adult medical provider 4. Create a portable medical summary 5. Create an emergency plan 6. Create a transition plan 7. Assist with ongoing insurance coverage 8. Discuss the legal aspects of transition 9. Discuss realistic future goals with the adolescent alone 10. Discuss realistic future goals with the adolescent and family 11. Provide ongoing routine adolescent health care ⁎ Indicates significance at p b .05.
Total Sub-specialists Generalists p value (n = 84) (n = 49) (n = 35)
Odds Ratio (95% CI)
38% 19%
49% 27%
23% 9%
p b .02 ⁎ 3.2 (1.23, 8.5 p b .04 ⁎ 3.9 (1.01, 14.75)
75% 46% 8% 38% 18% 30% 31% 55% 46%
78% 59% 12% 49% 22% 31% 33% 57% 33%
71% 29% 3% 23% 11% 29% 29% 51% 66%
p p p p p p p p p
b b b b b b b b b
.53 .01 ⁎ 3.6 (1.43,9.18) .125 .02 ⁎ 3.2 (1.23, 8.53) .19 .84 .69 .60 .01 ⁎ 1.3 (.53, 3.01)
Multidisciplinary Support for Healthcare Transitioning et al., 2015), which was developed from an extensive review of the literature. The 6 “critical first steps” from the 2002 consensus statement (American Academy of Pediatrics et al., 2002) and items from a 2008 survey (McManus et al., 2008) were used as the basis for development of “11 Essential Steps” for the New York State (NYS) survey. Additional questions within the NYS survey included presence of a written transition policy (Burke et al., 2008), the age to start transition planning (American Academy of Pediatrics et al., 2002; Burke et al., 2008; McManus et al., 2008; White & Hackett, 2009), details of transition support services (American Academy of Pediatrics et al., 2002; Burke et al., 2008; McManus et al., 2008; White & Hackett, 2009), and barriers to transition (McManus et al., 2008; Okumura et al., 2010). The current survey focused on the utilization of 11 Essential Steps (Table 1), and also gathered data on provider and setting characteristics, use of institution-specific resources, and familiarity with transitioning literature. Openended text-boxes at the end of survey questions also allowed for collection of brief qualitative data.
679 respondents included providers from the following areas: Hematology–Oncology, Endocrinology, Infectious Disease/ HIV, Gastroenterology, Nephrology, Cardiology, Rheumatology, Adolescent Medicine, Allergy/Immunology, Neurology, Developmental/Behavior, Pulmonary, and Urology.
Utilization of 11 Essential Steps for Healthcare Transitioning Table 1 shows the percentages of respondents reporting utilization of each of the 11 Essential Steps, and utilization by subspecialists and generalists. Two steps were completed by a majority of all respondents: 75% of pediatric providers identified an adult-oriented medical provider to whom they would transfer their transitioning patients and 55% said they discussed future goals with the adolescents and their families. Less than 20% of providers reported creating an emergency plan (8%), assisting with ongoing insurance coverage (18%), or having a designated member of the practice who coordinates transition (19.5%). Subspecialists were more likely to complete 4 specific Steps: identifying core knowledge and skills, have a designated member of the
Data Analysis Respondents who provided patient care to youth older than 12 years old and who assisted YSHCN’s with transition to adult-oriented practices were included in this analysis. Descriptive statistics were calculated for provider and setting characteristics, resource use, and utilization of each of the 11 Essential Steps (Table 1). The association of specific steps and provider characteristics was tested with chi square analysis. A compliance score (CS11) was calculated for each respondent as the sum (0–11) with one point assigned to each of the 11 Essential Steps utilized. The respondents’ CS11 scores were dichotomized into b 7 vs. ≥ 7, equivalent to 85th percentile of scores, to indicate optimal and suboptimal compliance with utilization of the identified steps. The association of optimal and suboptimal CS11 score with respondent and setting characteristics and use of resources was tested with chi square analyses. Odds ratios (ORs) along with their 95th percentile confidence intervals (CIs) also were calculated. A two-tailed alpha of 0.05 was used to denote statistical significance.
Results Demographic Characteristics The survey achieved a 28% response rate (n = 105), of whom 84 reported providing patient care to youth older than 12 and assistance in transitioning YSHCNs. Of these 84 respondents, 60 (71%) were female, all were more than 30 years old, and 32 (38%) were 50 years old or older. Of all respondents assisting YSHCNs (n = 84), 54 (64%) reported assisting with transition for youth without as well as with special health care needs; another 30 (36%) reported assisting YSHCNs only. Also, 58 respondents (69%) reported practicing in hospital based settings, while the rest practiced in community based or school based settings; 49 (58%) were subspecialists (Table 2). Subspecialist
Table 2
Respondent characteristics.
Area of practice Gender Age group Experience (years)
Type of practice
Percentage of patients 12 or older
Read transition statements
Uses standard forms Uses community resources Social work provides assistance Nursing a provides assistance
Sub-specialist (n = 49) Generalist (n = 35) Male (n = 21) Female (n = 60) 30–49 years (n = 47) 50 + years (n = 32) b 1 (n = 5) 1–10 (n = 25) 11–20 (n = 24) N 20 (n = 29) Hospital-based academic (n = 58) School–community–other (n = 26) 1–20% (n = 11) 21–40% (n = 32) 41–60% (n = 25) 61–80% (n = 6) 81–100% (n = 9) Neither (n = 50) 2002 only (n = 11) 2011 only (n = 10) Both (n = 13) Yes (n = 10) No (n = 72) Yes (n = 9) No (n = 74) Yes (n = 57) No (n = 27) Yes (n = 34) No (n = 50)
Some providers did not respond to all demographic questions. a Registered nurses and/or nurse practitioners.
680
L.F. Davidson et al.
practice, creating a portable medical summary, and creating a transition plan. Generalists were more likely to provide ongoing routine adolescent care. Overall, only 16.7% of respondents who reported assisting YSHCNs (n = 84) demonstrated optimal compliance, i.e. scoring ≥ 7 on the CS11; no provider was compliant with all 11 steps. Subspecialists had higher rates of optimal compliance scores (CS11 ≥ 7) than generalists (24.5 % vs. 5.7%; p b .02, OR = 5.35 [95% CI = 1.12, 25.69]) (Table 3). Providers who reported that N 80% of their patients were 12 or older (44% vs. 12%, p b .02, OR = 5.78 [95% CI = 1.31, 25.59]), and those who used standard forms (40% vs. 14%, p b .04, OR = 4.13 [95% CI = .99, 17.28]) were more likely to score ≥ 7 on the CS11. It should be noted, however, that only 10 (12%) of all respondents assisting YSHCNs reported using standardized forms as part of transition planning. Responses to openended questions indicated that some providers input a note or letter into electronic medical record at time of transition; some subspecialists also noted that their team had created their own transitioning tool based on a variety of existing tools. Provider age, gender, years of experience, practice setting, and use of community resources were not associated with compliance.
Multidisciplinary Support and Utilization of Eleven Essential Steps for Healthcare Transitioning Both social work support and nursing support with transition were associated with a higher likelihood of utilization of at least 7 of the 11 Essential Steps (Table 3). Providers who identified nursing (RN or NP) as a transition resource were more likely to report that they: identify patient’s core knowledge and skills (53% vs. 28%, p b .02, OR = 2.9 [95% CI = 1.16, 7.21]); have a designated member of practice (29% vs. 14%, p b .05, OR = 3.1 [95% CI .99, 9.44]); create a portable medical summary Table 3
(62% vs. 36%, p b .02, OR = 2.9 [95% CI = 1.67, 7.07]); and assist with ongoing insurance coverage (29% vs. 10%, p b .02, OR = 3.8 [95% CI = 1.15, 12.23]), compared to those without nursing involvement. Providers who identified social work as a transition resource were more likely to report that they: identify patient’s core knowledge and skills (51% vs. 11%, p b .001, OR = 8.3 [95% CI = 2.24, 30.64]); assist with ongoing insurance coverage (25% vs. 4%, p b .02, OR = 8.5 [95% CI = 1.05, 68.19]); and discuss legal aspects of healthcare (39% vs. 11%, p b .01, OR = 5.0 [95% CI = 1.35, 18.7]) compared to those who did not get support from social work. Similarly, other resources within the institution (child life therapists, parent representatives, call center, registration and billing staff) were rarely reported as utilized by providers and were not significantly associated with compliance scores.
Discussion Despite nearly two decades of recommendations and policy statements, smooth transitions to adult oriented health care do not occur regularly or seamlessly for youth with special health care needs (Prior, McManus, White, & Davidson, 2014). Our findings, from a large urban academic healthcare system, show that the majority of providers report assisting YSHCN in identifying an adult provider and discussing future goals with the adolescent and family. However, our study suggests limited and incomplete utilization of recommended steps in healthcare transition for YSHCNs. Pediatric subspecialists demonstrated somewhat greater compliance than generalists, but overall, utilization of recommended steps was incomplete. Difficulties in adherence to practice guidelines have been described in relation to asthma clinical care guidelines (Cabana, Rand, Becher, & Rubin, 2001) and pediatric nephrology transitioning guidelines (Forbes et al., 2014).
Providers with CS11 score ≥ 7 by selected variables.
Category
Participant Variable
% with ≥ 7 on CS11
Provider area of practice
Sub-specialist (n = 49) Generalist (n = 35) 30–49 years (n = 47) 50 + years (n = 32) 1–20% (n = 11) 21–40% (n = 32) 41–60% (n = 25) 61–80% (n = 6) 81–100% (n = 9) Yes (n = 10) No (n = 72) Yes (n = 57) No (n = 27) Yes (n = 34) No (n = 50)
24.5% 5.7% 23.4% 9.4% 9.1% 12.5% 16.0% 0.0% 44.4% 40.0% 13.9% 24.6% 0.0% 29.4% 8.0%
Provider age % patients 12 or older a
Uses standard forms Social work provides assistance Nursing b provides assistance a b
Those having 80% or more of their patients ≥ 12 compared to all other groups (p b .05). Registered nurses and/or nurse practitioners.
Sig. p b .02 p = .109
p b .118 p b .04 p b .005 p b .01
Multidisciplinary Support for Healthcare Transitioning Based on a literature review, Cabana et al. (1999) developed a framework to consider provider barriers to guideline adherence, which included lack of awareness, lack of familiarity, lack of agreement, lack of self-efficacy, lack of outcome expectancy, the inertia of previous practice, and external barriers. A number of subspecialty organizations have developed guidelines or consensus statements around transitioning practices and transfer to adult oriented health care for diseases diagnosed in childhood (Watson, Harden, et al., 2011; Webb et al., 2010; Yankaskas, Marshall, Sufian, Simon, & Rodman, 2004). It remains unclear whether improving provider compliance with consensus recommendations or guidelines results in better patient outcomes following healthcare transition. In this study, nursing involvement and social work involvement were associated with optimal compliance by physicians with recommended steps when transitioning YSHCNs to adult oriented health care, and great utilization of certain specific steps. Across institutions, a variety of structured transition programs have been created in order to facilitate the transition process for YSHCNs (Betz, 2013; Crowley et al., 2011; Flume, Taylor, Anderson, Gray, & Turner, 2004; Jordan & McDonagh, 2007; Woodward, Swigonski, & Ciccarelli, 2012). In a review of 122 transition programs, 77% provide case management, 40% of those by nurses, and 45% by social workers (Betz, 2013). A quality improvement study on transition of youth in a primary care setting emphasized the importance of “senior leadership support not only from medicine but also from nursing and social work”(McManus et al., 2015). The nursing role in transition has been described as a “key worker” or as a transition coordinator (Betz & Redcay, 2005; Rearick, 2007). Nursing is especially well suited to leadership in this role due to a framework of practice that encompasses an ecological approach (Wang, McGrath, & Watts, 2010), which includes the biological, developmental, behavioral and psychosocial aspects of care for YSHCNs and their families (Betz, 2013), along with specialized clinical knowledge regarding assessment, education, intervention and advocacy for those living with a special healthcare need and its potential complications over time (Betz & Redcay, 2005). Nursing presence in development of healthcare transitioning models (Betz, 2013), increased nursing education on the needs of youth and emerging adults with special healthcare needs (Osterkamp, Costanzo, Ehrhardt, & Gormley, 2013), and increasing disciplinary organization around healthcare transitioning could maximize the outcomes and the experience of care for this population as they enter adulthood and adult oriented health care settings. Social work competencies in utilizing a developmental and biopsychosocial framework (Wood, 1995), awareness of local, state, and national resources, and the importance of human relationships (National Association of Social Workers, 2008) have been identified as fundamental to a successful process of healthcare transitioning. Social
681 workers may serve as transition “brokers” (Shanske, Arnold, Carvalho, & Rein, 2012), consultants, or coordinators. While having a dedicated member of the team to coordinate transition is recommended across the literature, involvement of nursing or social work in this role alone does not address the need for comprehensive and coordinated care in a patient-centered medical home. The transition process requires involvement and investment by the entire multi-disciplinary team, who shares the goals of a planned and purposeful transition.
Strengths and Limitations The response rate to the survey was 28% was low, although response rates under 20% to Web-based clinician surveys are not uncommon (Dykema, Jones, Piche, & Stevenson, 2013). Numbers of providers from unique subspecialties were quite small and analysis was not undertaken to assess difference in provider practice by subspecialty; a wide breadth of subspecialties was represented by respondents. If the respondents self-selected because they are the providers most invested in the transitioning process, it could mean that our results overestimated compliance. This survey was limited to physician providers and does not include the perspective of the multidisciplinary team as other studies have (Fernandes et al., 2010). This study assessed data collected from a large urban academic healthcare network, reflecting current protocols and population served, and therefore may not be generalizable to all healthcare settings. However, it does highlight the need not only for development of and adherence with guidelines, but for utilizing guidelines and protocols consistently across an agency or institution. These findings reflect only the reported practices of physicians; other members of the multidisciplinary team may recognize and utilize resources differently.
Conclusion Instead of fostering maximal independence, the lack of an adequate transition process may result in a jarring transfer of care and loss/interruption of the Medical Home, and encourage inappropriate use of services in the community and an extended time receiving care in developmentallyinappropriate pediatric settings. We found limited and incomplete utilization of recommended transitioning steps for YSHCNs by pediatric providers, both generalists and subspecialists, within a single urban healthcare network that serves a large number of well adolescents and those with special healthcare needs. Nursing and social work involvement was associated with greater utilization of recommended steps for healthcare transitioning for YSHCNs. The assignment of subspecialty-specific social workers and a higher prevalence of nurse-educators and nurse-practitioners within subspecialty teams within the setting of a children’s hospital may explain the variance between outpatient primary care and subspecialty providers’ practices. The need for a truly interprofessional and comprehensive approach to healthcare, as recommended by the patient-centered medical home
682 model, suggests a need for greater availability of these crucial team members (Lemly, Weitzman, & O’Hare, 2013; McManus et al., 2015). Within the setting of this study, there is no formal transitioning program or model, as has been established at other institutions (Betz, 2013; Mennito & Clark, 2010; Watson, Parr, et al., 2011). Currently, transitioning guidelines and workflows are being agreed upon and disseminated across the Pediatrics, Family Medicine and Internal Medicine departments, and across primary care and family medicine practices. A multidisciplinary transition workgroup meets quarterly within the medical center. In 2013–2014, the primary care practices received Patient Centered Medical Home Certification Level 3 (National Committee for Quality Assurance, 2013); one of the foci of this initiative is to improve transition and transfer to the adult-oriented practices (Lemly et al., 2013). A recently funded quality improvement project will unite primary and subspecialty care planning through the use of transition navigators for youth with either sickle cell disease or asthma, which should advance and improve the quality, experience and efficiency of transition and transfer for YSHCNs and their families. Some subspecialties have independently created transition protocols and partnered with adult-oriented specialists. Plans are also under way to include standardized transitioning documentation into the electronic medical record as it is adopted by the institution. These efforts aim to increase consensus around and improve utilization of transitioning recommendations. Further research needs to assess the transition practices of all members of the multidisciplinary team (including the use of standardized tools and the electronic medical record) and whether operationalizing healthcare transition for YSHCNs as a multidisciplinary activity impacts the transitioning process and patient outcomes. Next steps in research and quality improvement at our institution also include assessing practices and barriers of adult-oriented providers who are accepting the care of YSHCNs, and providing additional training to pediatric and adult-oriented providers and multidisciplinary team members around YSHCNs and transitioning.
Acknowledgments Peter F. Belamarich MD; Frederick J. Kaskel, MD, PhD; Suzette Oyeku, MD, MPH; Rhonda Lieberman, LCSW-R; and the CHAM Division of General Pediatrics Investigator Group for their assistance in preparation of this manuscript.
References American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, & American Society of Internal Medicine (2002). A consensus statement on health care transitions for young adults with special health care needs. Pediatrics, 110, 1304–1306. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, Transitions Clinical Report Authoring Group, Cooley, W. C., & Sagerman, P. J. (2011).
L.F. Davidson et al. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 128, 182–200, http://dx.doi.org/10.1542/ peds.2011-0969. Betz, C. L. (2013). Health care transition for adolescents with special healthcare needs: Where is nursing? Nursing Outlook, 61, 258–265. Betz, C. L., & Redcay, G. (2005). Dimensions of the transition service coordinator role. Journal for Specialists in Pediatric Nursing, 10, 49–59. Burke, R., Spoerri, M., Price, A., Cardosi, A. M., & Flanagan, P. (2008). Survey of primary care pediatricians on the transition and transfer of adolescents to adult health care. Clinical Pediatrics, 47, 347–354, http://dx.doi.org/10.1177/0009922807310938. Cabana, M. D., Rand, C. S., Becher, O. J., & Rubin, H. R. (2001). Reasons for pediatrician nonadherence to asthma guidelines. Archives of Pediatrics & Adolescent Medicine, 155, 1057–1062. Cabana, M. D., Rand, C. S., Powe, N. R., Wu, A. W., Wilson, M. H., Abboud, P. -A. C., et al. (1999). Why don't physicians follow clinical practice guidelines?: A framework for improvement. JAMA, 282, 1458–1465. Crowley, R., Wolfe, I., Lock, K., & McKee, M. (2011). Improving the transition between paediatric and adult healthcare: A systematic review. Archives of Disease in Childhood, 96, 548–553, http://dx.doi.org/10. 1136/adc.2010.202473. Davidson, L. F., Chhabra, R., Cohen, H. W., Lechuga, C., Diaz, P., & Racine, A. (2015). Pediatricians transitioning practices, youth with special health care needs in New York State. Clinical Pediatrics, http:// dx.doi.org/10.1177/0009922815573940. Dykema, J., Jones, N. R., Piche, T., & Stevenson, J. (2013). Surveying clinicians by web: Current issues in design and administration. Evaluation & the Health Professions, 36, 352–381, http://dx.doi.org/ 10.1177/0163278713496630. Fernandes, S., Fishman, L., O’Sullivan-Oliveira, J., Ziniel, S., Melvin, P., Khairy, P., et al. (2010). Current practices for the transition and transfer of patients with a wide spectrum of pediatric-onset chronic diseases: Results of a clinician survey at a free-standing pediatric hospital. International Journal of Child and Adolescent Health, 3, 507–515. Flume, P. A., Taylor, L. A., Anderson, D. L., Gray, S., & Turner, D. (2004). Transition programs in cystic fibrosis centers: Perceptions of team members. Pediatric Pulmonology, 37, 4–7, http://dx.doi.org/10.1002/ ppul.10391. Forbes, T. A., Watson, A. R., Zurowska, A., Shroff, R., Bakkaloglu, S., Vondrak, K., et al. (2014). Adherence to transition guidelines in European paediatric nephrology units. Pediatric Nephrology, 1–8. Jordan, A., & McDonagh, J. (2007). Recognition of emerging adulthood in UK rheumatology: The case for young adult rheumatology service developments. Rheumatology, 46, 188–191. Koop, C. (1989). Executive summary. Growing up and getting medical care: Youth with special health care needs. Retrieved from: http://profiles. nlm.nih.gov/ps/access/NNbczs.pdf Lemly, D. C., Weitzman, E. R., & O’Hare, K. (2013). Current opinion. Advancing healthcare transitions in the medical home: Tools for providers, families and adolescents with special healthcare needs. Current Opinion in Pediatrics, 25, 439–446. McManus, M. A., Fox, H., O’Connor, K., & MacKinnon, J. (2008). Pediatric perspectives and practices on transitioning adolescents with special needs to adult health care. Fact sheet no.6. From http://www.medicalhomeinfo. org/downloads/pdfs/FactsheetTransitioningAdolescents-McManus.pdf. McManus, M. A., White, P., Barbour, A., Downing, B., Hawkins, K., Quion, N., et al. (2015). Pediatric to adult transition: A quality improvement model for primary care. Journal of Adolescent Health, 56, 73–78. Mennito, S. H., & Clark, J. K. (2010). Transition medicine: A review of current theory and practice. Southern Medical Journal, 103, 339–342, http://dx.doi.org/10.1097/SMJ.0b013e3181d32356. National Association of Social Workers (2008). Code of Ethics of the National Association of Social Workers. Retrieved from: http://www. socialworkers.org/pubs/code/code.asp.
Multidisciplinary Support for Healthcare Transitioning National Collaborative on Workforce & Disability for Youth (2012). Policy brief: Transition’s missing link: Health care transition. (5). Retrieved from: http://www.ncwd-youth.info/sites/default/files/policy-brief05_0.pdf. National Committee for Quality Assurance (2013). Clinician search. Retrieved from http://recognition.ncqa.org/. Okumura, M. J., Kerr, E. A., Cabana, M. D., Davis, M. M., Demonner, S., & Heisler, M. (2010). Physician views on barriers to primary care for young adults with childhood-onset chronic disease. Pediatrics, 125, e748–e754, http://dx.doi.org/10.1542/peds.2008-3451. Osterkamp, E. M., Costanzo, A. J., Ehrhardt, B. S., & Gormley, D. K. (2013). Transition of care for adolescent patients with chronic illness: Education for nurses. The Journal of Continuing Education in Nursing, 44, 38–42. Prior, M., McManus, M. A., White, P., & Davidson, L. (2014). Measuring the “triple aim” in transition care: A systematic review. Pediatrics, 134, e1648–e1661. Rearick, E. (2007). Enhancing success in transition service coordinators: Use of transformational leadership. Professional Case Management, 12, 283–287. Shanske, S., Arnold, J., Carvalho, M., & Rein, J. (2012). Social workers as transition brokers: Facilitating the transition from pediatric to adult medical care. Social Work in Health Care, 51, 279–295, http://dx.doi. org/10.1080/00981389.2011.638419. Stroud, C., Mainero, T., Olson, S., & Board on Youth Children and Families (2013). Improving the health, safety, and well-being of young adults. Workshop summary: Institute of Medicine and National Research Council of the National Academies. National Academies Press.
683 Wang, G., McGrath, B. B., & Watts, C. (2010). Health care transitions among youth with disabilities or special health care needs: An ecological approach. Journal of Pediatric Nursing, 25, 505–550, http://dx.doi.org/ 10.1016/j.pedn.2009.07.003. Watson, A. R., Harden, P., Ferris, M., Kerr, P. G., Mahan, J., & Ramzy, M. F. (2011a). Transition from pediatric to adult renal services: A consensus statement by the International Society of Nephrology (ISN) and the International Pediatric Nephrology Association (IPNA). Pediatric Nephrology, 26, 1753–1757. Watson, A. R., Parr, J. R., Joyce, C., May, C., & Le Couteur, A. S. (2011b). Models of transitional care for young people with complex health needs: A scoping review. Child: Care, Health and Development, 37, 780–791, http://dx.doi.org/10.1111/j.1365-2214.2011.01293.x. Webb, N., Harden, P., Lewis, C., Tizzard, S., Walsh, G., Wray, J., et al. (2010). Building consensus on transition of transplant patients from paediatric to adult healthcare. Archives of Disease in Childhood, 95, 606–611, http://dx.doi.org/10.1136/adc.2009.176255. White, P. H., & Hackett, P. (2009). On the threshold to the adult medical home: Care coordination in transition. Pediatric Annals, 38, 513–520, http://dx.doi.org/10.3928/00904481-20090820-11. Wood, B. L. (1995). A developmental biopsychosocial approach to the treatment of chronic illness in children and adolescents. Woodward, J. F., Swigonski, N. L., & Ciccarelli, M. R. (2012). Assessing the health, functional characteristics, and health needs of youth attending a noncategorical transition support program. Journal of Adolescent Health, 51, 272–278. Yankaskas, J. R., Marshall, B. C., Sufian, B., Simon, R. H., & Rodman, D. (2004). Cystic fibrosis adult care: Consensus conference report. Chest, 125, 1S–39S, http://dx.doi.org/10.1378/chest.125.1_suppl.1S.
