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Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach 8 (2015) 3–12 DOI 10.3233/PRM-150313 IOS Press
Implementation of an academic adult primary care clinic for adolescents and young adults with complex, chronic childhood conditions John C. Berensb and Cynthia Peacocka,b,∗ a b
Division of Internal Medicine and Pediatrics, Houston, TX, USA Baylor College of Medicine, Houston, TX, USA
Accepted for publication: 16 May 2014
Abstract. PURPOSE: For the growing population of adolescents and young adults with chronic childhood conditions (AYACCC), the transition from pediatric to adult health care contains many barriers and appropriate adult-based health care options are few. In 2005, the Transition Medicine Clinic (TMC), affiliated with Baylor College of Medicine, was established in Houston, Texas. It is one of the first clinics of its kind and serves AYACCC by providing a medical home in the adult health care system. This article describes the development and implementation of the TMC, its patient population and their resource needs, and lessons learned along the way. METHODS: We retrospectively examined the electronic health records of 332 patients that established care in the TMC prior to July, 2011. Data were collected describing multiple facets of the patient population and their resource utilization, both in aggregate and for several subgroups. RESULTS: The most common primary diagnoses were cerebral palsy, spina bifida, Down syndrome, genetic conditions, and autism. Patient characteristics demonstrated the unique challenges faced by the clinic: more than 80% received Medicaid, 65% had an intellectual disability, 41% used a wheelchair, and most had multiple secondary diagnoses. Compared to typical adult primary care practices, a larger amount of clinical resources, medical technology, and specialists were used, especially for those with the most medically fragile conditions. CONCLUSIONS: The results suggest that a clinic serving AYACCC requires physicians and support staff familiar with the aforementioned issues that are willing to spend a considerable amount of time and effort outside of routine office visits in health care coordination. Because many of these patients are covered by publicly funded health insurance, enhanced reimbursement must be considered to keep clinics like the TMC self-sustaining. Future research is needed to demonstrate adult-based care delivery models, develop clinical care guidelines, and evaluate key clinical outcomes. Keywords: Transition to adult care, chronic illnesses/conditions, adolescents, young adults, primary care, intellectual disabilities, cerebral palsy, spina bifida, down syndrome, autism
Abbreviations AYACCC:
Adolescents and young adults with chronic childhood conditions;
∗ Corresponding author: Cynthia Peacock, Baylor College of Medicine, 1 Baylor Plaza (MS: BCM 620), Houston, TX 77030, USA. Tel.: +1 713 798 0104; Fax: +1 713 798 0198; E-mail: [email protected].
c 2015 – IOS Press and the authors. All rights reserved 1874-5393/15/$35.00
BCM: EHR: ER: NOPC: TCH: TMC:
Baylor College of Medicine; Electronic health record; Emergency room; Non-office patient contact; Texas Children’s Hospital; Transition Medicine Clinic
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J.C. Berens and C. Peacock / Implementation of an academic adult primary care clinic for AYACCC
1. Introduction The number of young adults with chronic childhood conditions such as cystic fibrosis, spina bifida, congenital heart disease, cerebral palsy, and autism has greatly increased in recent decades, with the vast majority surviving into adulthood [1]. Every year, more than 500,000 youth in the United States with these conditions transfer from a pediatric to adult health care system [2]. The health care transition process is currently executed poorly. The process lacks coordinated, continuous care leading to worsening health outcomes during the transition period (e.g. adolescent patients with liver and kidney transplants, rheumatologic disease, and type 1 diabetes [3–6]). Additional barriers contribute to poor transitioning. Pediatricians lack the necessary time and reimbursement to facilitate a proper transition and internists lack appropriate training to care for chronic childhood conditions and have difficulty adequately caring for patients’ psychosocial needs [7,8]. Thus, the transition process requires mechanisms to improve outcomes. Yet, according to the 2009–2010 National Survey of Children with Special Health Care Needs, only 40% of responders received the services necessary to make appropriate transitions to adult health care, employment, and independence [9]. In 2002, the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians-American Society of Internal Medicine acknowledged these barriers with a consensus statement on the importance of health care transition for young adults with special health care needs [10]. While the importance of transition planning and coordination is recognized, the current literature lacks viable approaches or mechanisms to implement transition services in adult health care delivery systems for adolescents and young adults with chronic childhood conditions (AYACCC). The current situation in Harris County, Texas – home to the city of Houston and more than four million people – is largely the same. There is no department of government that keeps data on the number of AYACCC in the county, but there are over 22,000 children eligible for Social Security Income disability benefits younger than 18 years old [11], which suggests that there are large numbers of AYACCC in the Houston metropolitan area who will need to transition their health care to adult-based providers. Consistent with national data, Texas also has poor transition outcomes with only 35.4% of adolescents with special health care needs reported receiving adequate transition services [12].
To address these shortcomings, in 2005 the Transition Medicine Clinic (TMC) was established in Houston, Texas, within a large urban academic medical center. The TMC was initially developed as a true transition clinic but quickly evolved into an adult-based medical home due to the lack of any appropriate medical homes in the community. This article is a description of the development and implementation of the clinic, its patient population demographics and the resources they require, and how one medical center addresses the lack of suitable health care for young adults with significant chronic childhood conditions as they outgrow the pediatric healthcare setting. This article does not evaluate outcome measures; future studies will be needed to assess outcomes such as frequency of ER utilization and hospital admissions.
2. Methods 2.1. Clinic development Houston is home to Texas Children’s Hospital (TCH), one of the largest free-standing children’s hospitals in the United States. Prior to 2005, some of the patients who aged out of the pediatric system encountered barriers to accessing appropriate adult health care services. Many were uninsured or underinsured – especially given the high proportion of patients receiving Medicaid compared to the decreasing number of adult providers accepting it. In a biennial survey performed by the Texas Medical Association, the number of Texas providers accepting new Medicaid patients decreased from 42% in 2010 to 31% in 2012 [13]. Many patients also lacked transition readiness, as most pediatric providers had no formal process or curriculum in place. Patients and their families perceived a lack of experienced adult health care providers – i.e. they felt unwelcome or that they had not received the necessary level of care. Consequently, many of these patients relied heavily on pediatric emergency room (ER) services for ongoing care. The TMC was established in 2005 to provide appropriate primary care to patients experiencing a gap in coverage for the above reasons with the simultaneous goal of decreasing acute care resource utilization, such as emergency room visits. Since TCH is an affiliate of Baylor College of Medicine (BCM), the BCM adult clinical practice was considered to be the ideal site for the TMC. Initially, the clinic model was to provide consultative medical and social services with the hope of
J.C. Berens and C. Peacock / Implementation of an academic adult primary care clinic for AYACCC
eventually transitioning patients into the adult medical community – thus the clinic’s namesake. However, due to the complicated nature of most patients’ conditions and the ongoing complex care coordination, it was often impossible to find adult community providers who had the necessary time, training, and resources. As such, the TMC stood as the most suitable medical home for many of the patients. Although a slight misnomer, the TMC model of care became more akin to the adult equivalent of a pediatric special needs clinic. A very small minority of patients has graduated to community providers, while a few other patients primarily use the clinic on a consultative basis, mostly for support in obtaining social and medical resources. 2.2. Patient inclusion criteria Given the focus on continuity and primary care, the TMC has emphasized the care of the most complex cases, since these patients are less likely to find adequate care elsewhere and hold the most potential to experience a long-term impact. Each patient referral is assessed on an individual basis, but acceptance includes meeting several of the following criteria: technology dependence (e.g. ventilator), a diagnosis unfamiliar to most adult providers, intellectual disability, lack of access to appropriate adult health care due to insurance status, need for high level of care coordination, and lack of transition readiness. Patients who may meet inclusion criteria were excluded if they qualified for existing adult disease-specific clinics, except when they required extensive care coordination and/or had other medical conditions that complicated their care. In the city of Houston, adult cystic fibrosis and adult muscular dystrophy clinics were already well-established before the inception of the TMC. Those not accepted into the TMC were referred into the community or an appropriate disease-specific clinic after being offered resources and health care transition counseling. 2.3. Clinic operations and management In its creation, the TMC sought to address the barriers faced by patients leaving TCH. Medicine-Pediatric (Med-Peds) physicians were chosen as the primary providers to deliver care to the target population. MedPeds training offers the necessary knowledge of childhood diseases, while also providing the skills to manage adults and adult-onset chronic disease, like hypertension or diabetes. One systematic review of ten established transition clinics, while not conclusive, sug-
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gested that joint adult/pediatric clinics may be associated with better outcomes [14]. The TMC is staffed by three Med-Peds trained faculty physicians and also has Med-Peds and Internal Medicine residents from BCM as part of a month-long ambulatory rotation experience to help expose physicians-in-training to the unique health care needs of the patient population. The TMC hired its own social worker to address the overall lack of transition readiness seen in new patients, who often present to the TMC with unresolved issues such as guardianship and vocational possibilities following high school graduation. Since the TMC accepts Medicaid, many patients also have impending age changes that affect insurance eligibility. Patients can access the social worker via telephone and in person during each office visit. The social worker helps patients and their families with case management, navigating the adult health care system, and accessing community resources that help locate individualized employment, educational opportunities, and for some, independent living arrangements. In order to best deliver health care in the primary care setting, many of the daily operations of the TMC are based on the NCQA’s Patient-Centered Medical Home model [15]. The TMC uses an electronic health record (EHR) for medical documentation that has the ability to electronically prescribe, track all laboratory testing results, and contains built-in safety checks. Evidence-based guideline templates are used when applicable – such as for Down syndrome [16], cerebral palsy [17], and spina bifida [18] – and the TMC continually tries to create guidelines where none exist, such as for some of the rarer genetic diagnoses. The care team has weekly case management meetings and has a patient registry organized by disease. The nurses are in charge of referral tracking and follow up with patient subspecialist appointments. Patients are engaged in their own self-care by receiving a printed copy of their care plan after each visit and can communicate with their physician or view test results through a personalized and secure online access to portions of their medical records. The TMC provides extended clinic visits and a typical half-day clinic session is 5 to 7 patients. Due to the high proportion of patients with Medicaid, the full-time social worker, and extended clinic visit times, the clinic requires funding in the form of grants, philanthropic donations, and in-kind support from BCM. At its initiation, the clinic operated three half-days per week, partnering with BCM’s adult express care clinic for urgent visits. However, in 2012, in-
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J.C. Berens and C. Peacock / Implementation of an academic adult primary care clinic for AYACCC
creased funding to the TMC through Texas Health and Human Services Commission Delivery System Reform Incentive Payment (DSRIP) program under the 1115 Transformation Waiver has allowed the clinic to operate daily. 2.4. Analysis plan The study cohort included all patients (N = 332) who met the above inclusion criteria and were seen in the TMC from its initiation in 2005 through July 2011. Retrospective data collection was approved by the Institutional Review Board for Human Research Studies at BCM. All patient information was accessed through an EHR from March through July, 2011. Data collection prior to the switching of EHR carriers in 2006 was limited. Demographic information including patient gender, age at first TMC visit, zip code of residence, and type of insurance provider was recorded. Information on ethnicity and race was collected but not described here due to the high rate of unreported data. Also recorded were each patient’s primary diagnosis and the most frequently encountered secondary diagnoses, as documented in the EHR problem list. Additional documentation of intellectual disability, according to patient/family report, school records, physician assessment, or formal neuropsychiatric testing, was indicated as well. To quantify patient resource and technology needs, several parameters were measured. Medical technology utilization included wheelchairs, gastrostomy tubes, ventilators/respirators, ventriculo-peritoneal (VP) shunts, baclofen pumps, urinary catheterization, tracheostomies, and continuous positive airway pressure (CPAP) or bilevel positive airway pressure. Clinical resource usage was estimated using three parameters: total office visits to the TMC, non-office patient contact (NOPC), and physician-reviewed documents. The latter two measures were normalized by office visit to account for variability in length and frequency of care. NOPC included telephone calls made to the patient by physician or other staff, physician-patient emails, and prescription refills, all as documented in the EHR. Physician-reviewed documents represented the number of documents scanned into the EHR only after review or completion by a physician. They included past medical records, letters of medical necessity, and order forms covering home health care services, durable medical equipment, and medical supplies. Lastly, both pediatric and adult specialist usage was measured ac-
cording to patient report, physician referrals, and specialist correspondence in the EHR. In addition to the patient pool at large, subgroup analyses were performed for the patients with the five most common primary diagnoses; data were placed in multiple primary diagnosis groups when indicated (e.g. a patient with both autism and Down syndrome). Data from patients with genetic diagnoses not otherwise specified by another category were placed in the “genetic” group. An additional subgroup analysis was performed for patients that were classified as medically fragile. The group included patients who were highly technology-dependent, had complex conditions requiring high levels of specialist and community support, and were especially medically vulnerable – that is, had a health status that could change quickly and unpredictably [19–21]. All descriptive statistics were completed using Microsoft Excel.
3. Results The total study population consisted of 332 patients seen in the TMC, with the vast majority followed on a regular, non-consultative basis. These patients represented 22 different Texas counties and two Louisiana counties, with 241 patients (72.6%) heterogeneously distributed throughout 108 distinct zip codes within Harris County, Texas. Further demographic information, including gender and age at first TMC visit, are listed in Table 1, along with rates of the most common secondary diagnoses, measures of medical technology and clinical resource utilization, and types of insurance providers. The most common secondary diagnoses in TMC patients were constipation, gastroesophageal reflux disease, vitamin D deficiency, obesity, sleep apnea, osteoporosis, and seizures. In addition to the 81% (N = 268) of patients who had Medicaid, 34% (N = 114) had multiple insurance plans. Over 65% (N = 217) of patients had an intellectual disability, 41% (N = 136) used a wheelchair, and 28.3% (N = 94) fit both categories. Specialist usage is summarized in Table 2, which lists the 21 most commonly used specialties and the total number of specialists seen per patient, which averaged 3.8. The five most common primary diagnoses were cerebral palsy (N = 80), Down syndrome (N = 54), spina bifida (N = 52), genetic conditions not otherwise specified (N = 50), and autism (N = 17). There were 39 patients identified as being medically fragile. These patients had some of the highest rates of sec-
J.C. Berens and C. Peacock / Implementation of an academic adult primary care clinic for AYACCC
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Table 1 Demographic/Insurance information, secondary diagnoses, medical technology, and clinical resource use for transition medicine clinic patients Variable Autism Cerebral palsy Down syndrome Genetic Medically fragile Spina bifida Total No. of patientsa 17 80 54 50 39 52 Male, N (%) 52.9 43.8 55.6 42.0 61.5 46.2 Age at first TMC visit, mean (SD)b 20.1 (4.9) 20.6 (3.8) 27.3 (11.9) 23.6 (7.4) 22.6 (5.2) 20.1 (4.3) Secondary Diagnoses, N (%) Vitamin D deficiency 2 (11.8) 28 (35.0) 21 (38.9) 5 (10.0) 16 (41.0) 29 (55.8) Osteopenia/Osteoporosis 2 (11.8) 21 (26.3) 5 (9.3) 13 (26.0) 17 (43.6) 3 (5.8) GERD − 13 (16.3) 10 (18.5) 9 (18.0) 11 (28.2) 5 (9.6) Constipation 3 (17.6) 39 (48.8) 12 (22.2) 19 (38.0) 19 (48.7) 10 (19.2) Scoliosis 3 (17.6) 36 (45.0) − 26 (52.0) 25 (64.1) 19 (36.5) Seizures 2 (11.8) 46 (57.5) 4 (7.4) 17 (34.0) 21 (53.8) 6 (11.5) Obesity 2 (11.8) 6 (7.5) 32 (59.3) 9 (18.0) 1 (2.6) 17 (32.7) Sleep apnea − 16 (20.0) 26 (48.1) 9 (18.0) 8 (20.5) 5 (9.6) Neurogenic bladder − 3 (3.8) − 3 (6.0) 6 (15.4) 37 (71.2) Fracture historyc − 10 (12.5) − − 6 (15.4) 3 (5.8) Intellectually Disabled, N (%) 16 (94.1) 72 (90.0) 54 (100.0) 39 (78.0) 26 (66.7) 22 (42.3) Technology use, N (%) Wheelchair − 60 (75.0) − 22 (44.0) 31 (79.5) 37 (69.2) Gastrostomy tube 1 (5.9) 34 (42.5) 1 (1.9) 11 (22.0) 10 (26.0) 2 (3.8) VP shunt 1 (5.9) 13 (16.3) − 1 (2.0) 3 (7.7) 35 (67.3) Urinary catheterization − 3 (3.8) − 1 (2.0) 7 (17.9) 36 (69.2) Baclofen pump − 11 (13.8) − − 3 (7.7) − Tracheostomy − 10 (12.5) − 2 (4.0) 14 (35.9) 2 (3.8) Ventilator/respirator − 4 (5.0) − 2 (4.0) 9 (23.1) 1 (1.9) BiPAP/CPAP − 12 (15.0) 19 (35.2) 7 (14.0) 7 (17.9) 3 (5.8) Clinical resource use, mean (SD) Office Visits (OV) 4.4 (3.3) 6.2 (5.0) 3.9 (3.6) 7.0 (6.1) 7.7 (4.4) 4.7 (4.4) Non-office patient contact, 14.5 (35.2) 13.1 (11.2) 8.5 (6.2) 13.8 (18.8) 19.1 (11.3) 8.2 (6.2) per OVd Physician-reviewed paperwork, 6.6 (13.0) 5.9 (4.5) 4.6 (3.2) 6.0 (5.7) 6.7 (4.3) 4.5 (2.7) per OVe Insurance Use, N (%) Private only 5 (29.4) 4 (5.0) 7 (13.0) 6 (12.0) 1 (2.6) 8 (15.4) Medicaid only 7 (41.2) 41 (51.3) 18 (33.3) 24 (48.0) 20 (51.3) 35 (67.3) Medicare only − 2 (2.5) 5 (9.3) − − − Private + Medicaid 4 (23.5) 23 (28.8) 10 (18.5) 9 (18.0) 11 (28.2) 5 (9.6) Private + Medicare − − 2 (3.7) − − − Medicaid + Medicare 1 (5.9) 7 (8.8) 11 (20.4) 1 (2.0) 6 (15.4) 2 (3.8) Private + Medicaid + Medicare − 2 (2.5) 1 (1.9) 10 (20.0) 1 (2.6) 1 (1.9) CSHCN (state-funded) − 1 (1.3) − − − 1 (1.9)
Total 332 46.7 22.6 (7.3) 106 (31.9) 59 (17.8) 51 (15.4) 98 (29.5) 94 (28.3) 80 (24.1) 83 (25.0) 65 (19.6) 46 (13.9) 14 (4.2) 217 (65.4) 136 (41.0) 59 (17.8) 52 (15.7) 46 (13.9) 11 (3.3) 18 (5.4) 14 (4.2) 41 (12.3) 5.8 (5.4) 12.3 (15.1) 5.5 (5.5)
48 (14.5) 159 (47.9) 9 (2.7) 62 (18.7) 5 (1.5) 42 (12.7) 5 (1.5) 2 (0.6)
Abbreviations: BiPAP, bilevel positive airway pressure; CPAP, continuous positive airway pressure; CSHCN, children with special health care needs; GERD, gastroesophageal reflux disease; SD, standard deviation; a Total N is not the sum of the subgroups because further analysis was performed only on the five most populated primary diagnoses and medically fragile, as defined in the methods. b The age range at first TMC visit was 14 to 54 years old. c History of fractures since first TMC visit. d Non-office patient contact includes telephone calls, physician-patient emails, and prescription refills as documented in the electronic health record. e Physician-reviewed documents include reviewed medical records, letters of medical necessity, and physician order forms that cover home health care services, durable medical equipment, and medical supplies.
ondary diagnoses with the exception of obesity; 97% (N = 38) received Medicaid, and 51% (N = 20) also had Medicaid waiver services to help pay for durable medical equipment and nursing care. Genetic diagnoses included Williams syndrome, neurofibromatosis, Angelman syndrome, Turner syndrome, bladder exstrophy, Proteus syndrome, Rett syndrome, Canavan disease, Smith-Magenis syndrome, achondroplasia, CHARGE syndrome, Fragile X syndrome, and metabolic syndromes such as maple syrup urine disease and the mucopolysaccharidoses. Subgroup analysis of the five most common primary diagnoses and
medically fragile patients was performed for the same measures listed above and also summarized in Tables 1 and 2. Additionally, 37% (N = 20) of the patients with Down syndrome had thyroid disease, 46.3% (N = 25) had a heart condition, and 48.1% (N = 26) had sleep apnea. Of the 28 patients who did not have diagnosed sleep apnea, 82.1% (N = 23) had clinical symptoms of the disease reported in the EHR and only one patient had a documented negative sleep study. Furthermore, 25.0% (N = 13) of those with spina bifida had a history recurrent urinary tract infection.
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J.C. Berens and C. Peacock / Implementation of an academic adult primary care clinic for AYACCC Table 2 Specialty utilization in transition medicine clinic patients Autism Specialty, N (%) Cardiology Dermatology Endocrinology Gastroenterology Genetics Gynecology Hematology Infectious Disease Mental Health Providers Nephrology Neurology Neurosurgery Ophthalmology Orthopedic Surgery Otolaryngology Physical Medicine & Rehabilitation Physical/Occupational Therapy Pulmonology Rheumatology Urology Wound Care Total No. specialists per patient, mean (SD)a
3 (17.6) 1 (5.9) 1 (5.9) 2 (11.8) 3 (17.6) 5 (29.4) − 1 (5.9) 7 (41.2) − 2 (11.8) 1 (5.9) 4 (23.5) 2 (11.8) 4 (23.5) − 3 (17.6) − 1 (5.9) − − 2.6 (1.9)
Cerebral palsy Down syndrome 12 (15.0) 11 (13.8) 9 (11.3) 20 (25.0) 3 (3.8) 21 (26.3) − 7 (8.8) 9 (11.3) 1 (1.3) 40 (50.0) 12 (15.0) 12 (15.0) 22 (27.5) 14 (17.5) 27 (33.8) 32 (40.0) 19 (23.8) 2 (2.5) 7 (8.8) 3 (3.8) 3.9 (2.5)
35 (64.8) 7 (13.0) 12 (22.2) 10 (18.5) − 9 (16.7) 1 (1.9) − 13 (24.1) 1 (1.9) 6 (11.1) 1 (1.9) 4 (7.4) 3 (5.6) 8 (14.8) − 3 (5.6) 34 (63.0) − 1 (1.9) − 3.1 (1.9)
Genetic 16 (32.0) 6 (12.0) 6 (12.0) 19 (38.0) 17 (34.0) 14 (28.0) 3 (6.0) 3 (6.0) 10 (20.0) 2 (4.0) 17 (34.0) 5 (10.0) 7 (14.0) 14 (28.0) 9 (18.0) 8 (16.0) 14 (28.0) 14 (28.0) 4 (8.0) 6 (12.0) − 4.4 (2.5)
Medically fragile Spina bifida 8 (20.5) 4 (10.3) 4 (10.3) 14 (35.9) − 3 (7.7) 6 (15.4) 6 (15.4) 3 (7.7) 4 (10.3) 13 (33.3) 3 (7.7) 14 (35.9) 8 (20.5) 19 (48.7) 9 (23.1) 8 (20.5) 13 (33.3) − 7 (17.9) 1 (2.6) 5.3 (2.3)
6 (11.5) 6 (11.5) − 3 (5.8) − 7 (13.5) 2 (3.8) 5 (9.6) 5 (9.6) 8 (15.4) 10 (19.2) 15 (28.8) 4 (7.7) 11 (21.2) 4 (7.7) 11 (21.2) 15 (28.8) 9 (17.3) − 31 (59.6) 7 (13.5) 3.3 (2.0)
Total 109 (32.8) 43 (13.0) 42 (12.7) 70 (21.0) 31 (9.3) 71 (21.4) 18 (5.4) 28 (8.4) 58 (17.5) 26 (7.8) 96 (28.9) 36 (10.8) 48 (14.5) 64 (19.3) 52 (16.0) 58 (17.0) 89 (26.8) 100 (30.1) 23 (6.9) 56 (16.9) 14 (4.2) 3.8 (2.4)
Abbreviations: SD, standard deviation; a Number includes specialists not listed in this table, which only contains the 21 most commonly used specialists.
4. Discussion 4.1. Patient population The characteristics of the TMC patients posed specific challenges and opportunities. The population was diverse in age, with a range of 14 to 54 years old (average 22.6) at first clinic visit. The average and upper limit of age was much higher than expected for the age at transition to adult health care. Since none of the patients accepted into the TMC were receiving ongoing primary care from an adult health care provider, these findings confirmed the clinical observation that older patients with chronic childhood diseases were still receiving care from their pediatrician or had simply been without regular health care. The patient population also demonstrated geographical and racial diversity. Although not adequately documented in the EHR, the patients as a whole qualitatively reflected the fact that Houston is one of the most ethnically diverse large metropolitan areas in the country [22]. The patients’ geographical range of origin was quite expansive, reaching across multiple Texas counties and even into Louisiana. The vast majority of patients were heterogeneously distributed throughout 108 different zip codes of Harris County, which is the 3rd
most populous county in the country [23] and expands 1,703 square miles [24], larger than the state of Rhode Island. Having many patients who were not in close proximity to the TMC often led to more contact outside of office visits, and in a few cases, finding community physicians that could co-manage care closer to the patient’s home. Finding co-management opportunities proved difficult due to the complexity of the patients’ conditions, lack of disease familiarity by most community physicians, and the low rates of physicians accepting new patients with Medicaid. Familiarity with multiple health insurance modalities was crucial in delivering care to the TMC population. Knowledge of Medicaid eligibility and reimbursement rules was particularly important given the extremely disproportionate number of TMC patients receiving Medicaid, especially the patients in the medically fragile subgroup. The percentage of TMC patients on Medicaid was higher than described for pediatric patients with special health care needs having publically-funded health insurance [25]. A large number of distinct primary diagnoses were seen in the clinic. The diversity and number of rare cases is due mostly to referrals from TCH, a large tertiary referral center that frequently sees complex and uncommon cases. Many of these diagnoses, such as Proteus syndrome and maple syrup urine disease, are
J.C. Berens and C. Peacock / Implementation of an academic adult primary care clinic for AYACCC
exceedingly rare, especially in the adult population. As a result, the likelihood of finding suitable adult primary care was even lower, which contributed to the high number of patients utilizing the TMC as a medical home instead of as a transition program to a community adult primary care practice. In addition to the complexity and variety of primary diagnoses, all patients had multiple secondary diagnoses. It was important for TMC physicians to recognize the most common problems for several reasons. With such high frequencies of certain diagnoses, it was necessary to have a strong familiarity with the subsequent management and a strong relationship with relevant specialists, such as the need for a pulmonology referral to diagnose and manage sleep apnea. Some secondary diagnoses also put patients at risk for additional problems. For example, many patients used a wheelchair, had vitamin D deficiency, took anticonvulsants, and had an intellectual disability, all of which are known risk factors associated with osteoporosis [26,27]. Several of the TMC patients with these risk factors experienced long bone fractures, which demonstrate an important emerging trend requiring the development of best practices for management and screening. There was an especially high prevalence of sleep apnea in the Down syndrome population. Screening for sleep apnea in patients with Down syndrome is recommended clinical practice throughout the lifespan [28], but the prevalence of sleep apnea in adults with Down syndrome is less well established. One study found that over 90% of these individuals had sleep apnea [29]. In the TMC, only about half of the patients with Down syndrome had an official diagnosis of sleep apnea, but the near absence of negative studies and high incidence of clinical signs in undiagnosed patients suggests that the prevalence may be much closer to 90%. Further investigation is warranted, but preliminary data suggest more vigorous screening for sleep apnea may be needed for all patients with Down syndrome once they reach adulthood. Although nearly two-thirds of TMC patients had an intellectual disability, there was a wide range in the level of disability. This diagnosis adds another level of care coordination that requires more family involvement and the need for more proactive management or “health checks” [30]. It also has implications for women’s health issues and contraceptive use [31], as well as for legal issues such as guardianship and medical decision-making. The TMC encountered these issues routinely.
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4.2. Resource usage Many patients rely on medical technology, so TMC physicians need to be familiar with the management of various medical devices, like gastrostomy tubes, ventilators, and CPAP. Device management includes recognizing potential device malfunctions – such as with a VP shunt or baclofen pump – and being attuned to the risk of developing infection with use of indwelling devices. For example, the subgroup of patients with spina bifida, who had high rates of urinary catheterization (69%), also had a high incidence of recurrent urinary tract infections (25%). In addition to medical devices, 41% of TMC patients used wheelchairs. To accommodate patients in wheelchairs or on stretchers, the clinic is handicap accessible with large exam rooms, Hoyer lifts, wheelchair scales, and handicap-accessible exam tables. The TMC physicians routinely assess patients for associated problems – such as skin breakdown – as well as for their risk of developing osteoporosis or a fracture. TMC patients saw an average of 3.8 specialists. The number was higher (5.3) for the medically fragile subgroup, consistent with the criteria for medically fragile/complex youth outlined in a previous study looking exclusively at a pediatric population [21]. Moreover, these numbers are likely underestimates since they partially relied on patient report. Nonetheless, the data show a heavy utilization of a vast number of specialists that qualitatively varies by primary diagnosis. Frequency of specialist use was also indicative of the level of coordination and follow-up the clinic performed as a medical home. Each of the pediatric specialists that TMC patients still utilized required its own transition to adult specialty care. Time was spent counseling how to best approach each transition, and the TMC often served as a referral center to adult specialists known to provide excellent care to this patient population. Given the large number of specialists used, the varied and often uncommon primary diagnoses, the numerous secondary health concerns, device management, high rates of Medicaid insurance, and the diverse geographical and cultural origins of the patient population, it comes as no surprise that a large amount of care coordination was required. Physicians spent increased time with patients during clinic visits in addition to a substantial amount of clinical resources used between visits. On average, there were 6 physician-reviewed documents and more than a dozen instances of NOPC (telephone calls, emails, or prescription refills) in between each visit. The latter number is nearly four times
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that of one study’s estimate for general adult primary care [32]. Due to the amount of time and effort spent on coordination, physicians spend a half-day in direct patient care and the remaining half-day managing ongoing patient care issues. At present, there has not been much data collected to analyze outcomes and overall cost savings of the TMC, so future projects will need to examine these measures. To be sustainable and widely applicable, a clinic like the TMC will need to continue to increase patient satisfaction, improve quality and outcomes, and validate cost savings [33]. Presently, the TMC remains a demonstration of one of the first successfully implemented and sustained clinics providing a medical home to the population of AYACCC in most need of high-level health care and resource coordination.
has utilized on-the-job training for its physicians and other health care providers. While Med-Peds trained physicians certainly receive appropriate training during residency to care for AYACCC, there are simply not enough interested physicians with this background to adequately meet the growing demand. Curriculum development regarding care for this patient population is needed for all health care disciplines and across all levels of trainees. While other barriers exist, it is imperative to continue to explore innovative and alternative models of care delivery as dictated by local circumstance, to document these attempts, and to evaluate their outcomes.
4.3. Other considerations
Transitioning from the world of pediatric to adult medicine is not easy, especially for those with chronic childhood conditions. The literature has identified numerous barriers to a seamless transition into the adult health care system, including poor reimbursement for transition planning, lack of knowledgeable adult health care providers, and labor-intensive care coordination. One potential solution is described in this article: an academic adult health care clinic targeting some of the most complex childhood conditions. Due to the lack of appropriate care in the community, it acts primarily as a medical home, but also co-manages care or acts as a consultative service for a small minority of patients. Because the clinic is situated in an academic center, it is staffed with the help of health care trainees. TMC patients are diverse in geographical origin and diagnosis. Most of these patients have Medicaid, have various associated diagnoses including intellectual disability, and require care from multiple specialists. Many of them rely on medical technology and need extensive clinical and community resources. The TMC provides extended office visits and employs a full time social worker, and TMC physicians spend equal time on direct patient care and management of care coordination. As a result, multiple sources of funding outside of standard insurance reimbursements were required for clinic operations and independent sustainability is unlikely without enhanced compensation from both private and public health insurance. While data collection is ongoing to demonstrate the TMC’s effect on quality outcomes and cost savings, it is an example of a successfully implemented and sustained clinic serving the complex needs of AYACCC. Clinics similar to the TMC could help establish adult clinical practice
The model of care delivery for AYACCC described here was the natural product of local circumstances; so factors affecting its generalizability must be considered. The TMC’s affiliation with TCH, a large regional and national referral center, provides a significant number of patients with complex and often rare conditions that may be unable to transition to typical adult primary care. Furthermore, the formation of the TMC would not have been possible without the support of both pediatric and internal medicine departments at BCM. The initial momentum and interest in creating such a clinic was largely due to the interests and passions of a few individuals. The college also has a wellestablished Med-Peds program that allows the clinic to be staffed by well-equipped, combined-trained faculty, in addition to numerous healthcare providers intraining. As mentioned above, the clinic also required grant funding and other institutional support and is not independently financially sustainable under the current models of reimbursement. It will be critical to demonstrate improved care quality and overall cost savings, due at least in part to reduced emergency room visits and hospital admissions. These outcomes will be especially important as the health care system moves away from fee-for-service and toward bundled payment models. Lastly, it is important to consider more widely applicable solutions. There is not currently any ACGMEaccredited post-graduate medical training specifically addressing transition health care or health care for this population of patients as adults. As a result, the TMC
5. Conclusion
J.C. Berens and C. Peacock / Implementation of an academic adult primary care clinic for AYACCC
guidelines for patients with spina bifida, cerebral palsy and numerous other pediatric-onset conditions and develop curriculum to train community adult healthcare providers. It will take a coordinated, collaborative effort to demonstrative innovative care delivery models and provide the necessary health care that this unique population so desperately needs.
[11]
[12]
[13]
Acknowledgement We would like to acknowledge Betty L. Ligon for manuscript editing.
Conflict of interest
[14]
[15]
The authors have no conflict of interest to declare.
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Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach 8 (2015) 3–12 DOI 10.3233/PRM-150313 IOS Press
Implementation of an academic adult primary care clinic for adolescents and young adults with complex, chronic childhood conditions John C. Berensb and Cynthia Peacocka,b,∗ a b
Division of Internal Medicine and Pediatrics, Houston, TX, USA Baylor College of Medicine, Houston, TX, USA
Accepted for publication: 16 May 2014
Abstract. PURPOSE: For the growing population of adolescents and young adults with chronic childhood conditions (AYACCC), the transition from pediatric to adult health care contains many barriers and appropriate adult-based health care options are few. In 2005, the Transition Medicine Clinic (TMC), affiliated with Baylor College of Medicine, was established in Houston, Texas. It is one of the first clinics of its kind and serves AYACCC by providing a medical home in the adult health care system. This article describes the development and implementation of the TMC, its patient population and their resource needs, and lessons learned along the way. METHODS: We retrospectively examined the electronic health records of 332 patients that established care in the TMC prior to July, 2011. Data were collected describing multiple facets of the patient population and their resource utilization, both in aggregate and for several subgroups. RESULTS: The most common primary diagnoses were cerebral palsy, spina bifida, Down syndrome, genetic conditions, and autism. Patient characteristics demonstrated the unique challenges faced by the clinic: more than 80% received Medicaid, 65% had an intellectual disability, 41% used a wheelchair, and most had multiple secondary diagnoses. Compared to typical adult primary care practices, a larger amount of clinical resources, medical technology, and specialists were used, especially for those with the most medically fragile conditions. CONCLUSIONS: The results suggest that a clinic serving AYACCC requires physicians and support staff familiar with the aforementioned issues that are willing to spend a considerable amount of time and effort outside of routine office visits in health care coordination. Because many of these patients are covered by publicly funded health insurance, enhanced reimbursement must be considered to keep clinics like the TMC self-sustaining. Future research is needed to demonstrate adult-based care delivery models, develop clinical care guidelines, and evaluate key clinical outcomes. Keywords: Transition to adult care, chronic illnesses/conditions, adolescents, young adults, primary care, intellectual disabilities, cerebral palsy, spina bifida, down syndrome, autism
Abbreviations AYACCC:
Adolescents and young adults with chronic childhood conditions;
∗ Corresponding author: Cynthia Peacock, Baylor College of Medicine, 1 Baylor Plaza (MS: BCM 620), Houston, TX 77030, USA. Tel.: +1 713 798 0104; Fax: +1 713 798 0198; E-mail: [email protected].
c 2015 – IOS Press and the authors. All rights reserved 1874-5393/15/$35.00
BCM: EHR: ER: NOPC: TCH: TMC:
Baylor College of Medicine; Electronic health record; Emergency room; Non-office patient contact; Texas Children’s Hospital; Transition Medicine Clinic
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1. Introduction The number of young adults with chronic childhood conditions such as cystic fibrosis, spina bifida, congenital heart disease, cerebral palsy, and autism has greatly increased in recent decades, with the vast majority surviving into adulthood [1]. Every year, more than 500,000 youth in the United States with these conditions transfer from a pediatric to adult health care system [2]. The health care transition process is currently executed poorly. The process lacks coordinated, continuous care leading to worsening health outcomes during the transition period (e.g. adolescent patients with liver and kidney transplants, rheumatologic disease, and type 1 diabetes [3–6]). Additional barriers contribute to poor transitioning. Pediatricians lack the necessary time and reimbursement to facilitate a proper transition and internists lack appropriate training to care for chronic childhood conditions and have difficulty adequately caring for patients’ psychosocial needs [7,8]. Thus, the transition process requires mechanisms to improve outcomes. Yet, according to the 2009–2010 National Survey of Children with Special Health Care Needs, only 40% of responders received the services necessary to make appropriate transitions to adult health care, employment, and independence [9]. In 2002, the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians-American Society of Internal Medicine acknowledged these barriers with a consensus statement on the importance of health care transition for young adults with special health care needs [10]. While the importance of transition planning and coordination is recognized, the current literature lacks viable approaches or mechanisms to implement transition services in adult health care delivery systems for adolescents and young adults with chronic childhood conditions (AYACCC). The current situation in Harris County, Texas – home to the city of Houston and more than four million people – is largely the same. There is no department of government that keeps data on the number of AYACCC in the county, but there are over 22,000 children eligible for Social Security Income disability benefits younger than 18 years old [11], which suggests that there are large numbers of AYACCC in the Houston metropolitan area who will need to transition their health care to adult-based providers. Consistent with national data, Texas also has poor transition outcomes with only 35.4% of adolescents with special health care needs reported receiving adequate transition services [12].
To address these shortcomings, in 2005 the Transition Medicine Clinic (TMC) was established in Houston, Texas, within a large urban academic medical center. The TMC was initially developed as a true transition clinic but quickly evolved into an adult-based medical home due to the lack of any appropriate medical homes in the community. This article is a description of the development and implementation of the clinic, its patient population demographics and the resources they require, and how one medical center addresses the lack of suitable health care for young adults with significant chronic childhood conditions as they outgrow the pediatric healthcare setting. This article does not evaluate outcome measures; future studies will be needed to assess outcomes such as frequency of ER utilization and hospital admissions.
2. Methods 2.1. Clinic development Houston is home to Texas Children’s Hospital (TCH), one of the largest free-standing children’s hospitals in the United States. Prior to 2005, some of the patients who aged out of the pediatric system encountered barriers to accessing appropriate adult health care services. Many were uninsured or underinsured – especially given the high proportion of patients receiving Medicaid compared to the decreasing number of adult providers accepting it. In a biennial survey performed by the Texas Medical Association, the number of Texas providers accepting new Medicaid patients decreased from 42% in 2010 to 31% in 2012 [13]. Many patients also lacked transition readiness, as most pediatric providers had no formal process or curriculum in place. Patients and their families perceived a lack of experienced adult health care providers – i.e. they felt unwelcome or that they had not received the necessary level of care. Consequently, many of these patients relied heavily on pediatric emergency room (ER) services for ongoing care. The TMC was established in 2005 to provide appropriate primary care to patients experiencing a gap in coverage for the above reasons with the simultaneous goal of decreasing acute care resource utilization, such as emergency room visits. Since TCH is an affiliate of Baylor College of Medicine (BCM), the BCM adult clinical practice was considered to be the ideal site for the TMC. Initially, the clinic model was to provide consultative medical and social services with the hope of
J.C. Berens and C. Peacock / Implementation of an academic adult primary care clinic for AYACCC
eventually transitioning patients into the adult medical community – thus the clinic’s namesake. However, due to the complicated nature of most patients’ conditions and the ongoing complex care coordination, it was often impossible to find adult community providers who had the necessary time, training, and resources. As such, the TMC stood as the most suitable medical home for many of the patients. Although a slight misnomer, the TMC model of care became more akin to the adult equivalent of a pediatric special needs clinic. A very small minority of patients has graduated to community providers, while a few other patients primarily use the clinic on a consultative basis, mostly for support in obtaining social and medical resources. 2.2. Patient inclusion criteria Given the focus on continuity and primary care, the TMC has emphasized the care of the most complex cases, since these patients are less likely to find adequate care elsewhere and hold the most potential to experience a long-term impact. Each patient referral is assessed on an individual basis, but acceptance includes meeting several of the following criteria: technology dependence (e.g. ventilator), a diagnosis unfamiliar to most adult providers, intellectual disability, lack of access to appropriate adult health care due to insurance status, need for high level of care coordination, and lack of transition readiness. Patients who may meet inclusion criteria were excluded if they qualified for existing adult disease-specific clinics, except when they required extensive care coordination and/or had other medical conditions that complicated their care. In the city of Houston, adult cystic fibrosis and adult muscular dystrophy clinics were already well-established before the inception of the TMC. Those not accepted into the TMC were referred into the community or an appropriate disease-specific clinic after being offered resources and health care transition counseling. 2.3. Clinic operations and management In its creation, the TMC sought to address the barriers faced by patients leaving TCH. Medicine-Pediatric (Med-Peds) physicians were chosen as the primary providers to deliver care to the target population. MedPeds training offers the necessary knowledge of childhood diseases, while also providing the skills to manage adults and adult-onset chronic disease, like hypertension or diabetes. One systematic review of ten established transition clinics, while not conclusive, sug-
5
gested that joint adult/pediatric clinics may be associated with better outcomes [14]. The TMC is staffed by three Med-Peds trained faculty physicians and also has Med-Peds and Internal Medicine residents from BCM as part of a month-long ambulatory rotation experience to help expose physicians-in-training to the unique health care needs of the patient population. The TMC hired its own social worker to address the overall lack of transition readiness seen in new patients, who often present to the TMC with unresolved issues such as guardianship and vocational possibilities following high school graduation. Since the TMC accepts Medicaid, many patients also have impending age changes that affect insurance eligibility. Patients can access the social worker via telephone and in person during each office visit. The social worker helps patients and their families with case management, navigating the adult health care system, and accessing community resources that help locate individualized employment, educational opportunities, and for some, independent living arrangements. In order to best deliver health care in the primary care setting, many of the daily operations of the TMC are based on the NCQA’s Patient-Centered Medical Home model [15]. The TMC uses an electronic health record (EHR) for medical documentation that has the ability to electronically prescribe, track all laboratory testing results, and contains built-in safety checks. Evidence-based guideline templates are used when applicable – such as for Down syndrome [16], cerebral palsy [17], and spina bifida [18] – and the TMC continually tries to create guidelines where none exist, such as for some of the rarer genetic diagnoses. The care team has weekly case management meetings and has a patient registry organized by disease. The nurses are in charge of referral tracking and follow up with patient subspecialist appointments. Patients are engaged in their own self-care by receiving a printed copy of their care plan after each visit and can communicate with their physician or view test results through a personalized and secure online access to portions of their medical records. The TMC provides extended clinic visits and a typical half-day clinic session is 5 to 7 patients. Due to the high proportion of patients with Medicaid, the full-time social worker, and extended clinic visit times, the clinic requires funding in the form of grants, philanthropic donations, and in-kind support from BCM. At its initiation, the clinic operated three half-days per week, partnering with BCM’s adult express care clinic for urgent visits. However, in 2012, in-
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J.C. Berens and C. Peacock / Implementation of an academic adult primary care clinic for AYACCC
creased funding to the TMC through Texas Health and Human Services Commission Delivery System Reform Incentive Payment (DSRIP) program under the 1115 Transformation Waiver has allowed the clinic to operate daily. 2.4. Analysis plan The study cohort included all patients (N = 332) who met the above inclusion criteria and were seen in the TMC from its initiation in 2005 through July 2011. Retrospective data collection was approved by the Institutional Review Board for Human Research Studies at BCM. All patient information was accessed through an EHR from March through July, 2011. Data collection prior to the switching of EHR carriers in 2006 was limited. Demographic information including patient gender, age at first TMC visit, zip code of residence, and type of insurance provider was recorded. Information on ethnicity and race was collected but not described here due to the high rate of unreported data. Also recorded were each patient’s primary diagnosis and the most frequently encountered secondary diagnoses, as documented in the EHR problem list. Additional documentation of intellectual disability, according to patient/family report, school records, physician assessment, or formal neuropsychiatric testing, was indicated as well. To quantify patient resource and technology needs, several parameters were measured. Medical technology utilization included wheelchairs, gastrostomy tubes, ventilators/respirators, ventriculo-peritoneal (VP) shunts, baclofen pumps, urinary catheterization, tracheostomies, and continuous positive airway pressure (CPAP) or bilevel positive airway pressure. Clinical resource usage was estimated using three parameters: total office visits to the TMC, non-office patient contact (NOPC), and physician-reviewed documents. The latter two measures were normalized by office visit to account for variability in length and frequency of care. NOPC included telephone calls made to the patient by physician or other staff, physician-patient emails, and prescription refills, all as documented in the EHR. Physician-reviewed documents represented the number of documents scanned into the EHR only after review or completion by a physician. They included past medical records, letters of medical necessity, and order forms covering home health care services, durable medical equipment, and medical supplies. Lastly, both pediatric and adult specialist usage was measured ac-
cording to patient report, physician referrals, and specialist correspondence in the EHR. In addition to the patient pool at large, subgroup analyses were performed for the patients with the five most common primary diagnoses; data were placed in multiple primary diagnosis groups when indicated (e.g. a patient with both autism and Down syndrome). Data from patients with genetic diagnoses not otherwise specified by another category were placed in the “genetic” group. An additional subgroup analysis was performed for patients that were classified as medically fragile. The group included patients who were highly technology-dependent, had complex conditions requiring high levels of specialist and community support, and were especially medically vulnerable – that is, had a health status that could change quickly and unpredictably [19–21]. All descriptive statistics were completed using Microsoft Excel.
3. Results The total study population consisted of 332 patients seen in the TMC, with the vast majority followed on a regular, non-consultative basis. These patients represented 22 different Texas counties and two Louisiana counties, with 241 patients (72.6%) heterogeneously distributed throughout 108 distinct zip codes within Harris County, Texas. Further demographic information, including gender and age at first TMC visit, are listed in Table 1, along with rates of the most common secondary diagnoses, measures of medical technology and clinical resource utilization, and types of insurance providers. The most common secondary diagnoses in TMC patients were constipation, gastroesophageal reflux disease, vitamin D deficiency, obesity, sleep apnea, osteoporosis, and seizures. In addition to the 81% (N = 268) of patients who had Medicaid, 34% (N = 114) had multiple insurance plans. Over 65% (N = 217) of patients had an intellectual disability, 41% (N = 136) used a wheelchair, and 28.3% (N = 94) fit both categories. Specialist usage is summarized in Table 2, which lists the 21 most commonly used specialties and the total number of specialists seen per patient, which averaged 3.8. The five most common primary diagnoses were cerebral palsy (N = 80), Down syndrome (N = 54), spina bifida (N = 52), genetic conditions not otherwise specified (N = 50), and autism (N = 17). There were 39 patients identified as being medically fragile. These patients had some of the highest rates of sec-
J.C. Berens and C. Peacock / Implementation of an academic adult primary care clinic for AYACCC
7
Table 1 Demographic/Insurance information, secondary diagnoses, medical technology, and clinical resource use for transition medicine clinic patients Variable Autism Cerebral palsy Down syndrome Genetic Medically fragile Spina bifida Total No. of patientsa 17 80 54 50 39 52 Male, N (%) 52.9 43.8 55.6 42.0 61.5 46.2 Age at first TMC visit, mean (SD)b 20.1 (4.9) 20.6 (3.8) 27.3 (11.9) 23.6 (7.4) 22.6 (5.2) 20.1 (4.3) Secondary Diagnoses, N (%) Vitamin D deficiency 2 (11.8) 28 (35.0) 21 (38.9) 5 (10.0) 16 (41.0) 29 (55.8) Osteopenia/Osteoporosis 2 (11.8) 21 (26.3) 5 (9.3) 13 (26.0) 17 (43.6) 3 (5.8) GERD − 13 (16.3) 10 (18.5) 9 (18.0) 11 (28.2) 5 (9.6) Constipation 3 (17.6) 39 (48.8) 12 (22.2) 19 (38.0) 19 (48.7) 10 (19.2) Scoliosis 3 (17.6) 36 (45.0) − 26 (52.0) 25 (64.1) 19 (36.5) Seizures 2 (11.8) 46 (57.5) 4 (7.4) 17 (34.0) 21 (53.8) 6 (11.5) Obesity 2 (11.8) 6 (7.5) 32 (59.3) 9 (18.0) 1 (2.6) 17 (32.7) Sleep apnea − 16 (20.0) 26 (48.1) 9 (18.0) 8 (20.5) 5 (9.6) Neurogenic bladder − 3 (3.8) − 3 (6.0) 6 (15.4) 37 (71.2) Fracture historyc − 10 (12.5) − − 6 (15.4) 3 (5.8) Intellectually Disabled, N (%) 16 (94.1) 72 (90.0) 54 (100.0) 39 (78.0) 26 (66.7) 22 (42.3) Technology use, N (%) Wheelchair − 60 (75.0) − 22 (44.0) 31 (79.5) 37 (69.2) Gastrostomy tube 1 (5.9) 34 (42.5) 1 (1.9) 11 (22.0) 10 (26.0) 2 (3.8) VP shunt 1 (5.9) 13 (16.3) − 1 (2.0) 3 (7.7) 35 (67.3) Urinary catheterization − 3 (3.8) − 1 (2.0) 7 (17.9) 36 (69.2) Baclofen pump − 11 (13.8) − − 3 (7.7) − Tracheostomy − 10 (12.5) − 2 (4.0) 14 (35.9) 2 (3.8) Ventilator/respirator − 4 (5.0) − 2 (4.0) 9 (23.1) 1 (1.9) BiPAP/CPAP − 12 (15.0) 19 (35.2) 7 (14.0) 7 (17.9) 3 (5.8) Clinical resource use, mean (SD) Office Visits (OV) 4.4 (3.3) 6.2 (5.0) 3.9 (3.6) 7.0 (6.1) 7.7 (4.4) 4.7 (4.4) Non-office patient contact, 14.5 (35.2) 13.1 (11.2) 8.5 (6.2) 13.8 (18.8) 19.1 (11.3) 8.2 (6.2) per OVd Physician-reviewed paperwork, 6.6 (13.0) 5.9 (4.5) 4.6 (3.2) 6.0 (5.7) 6.7 (4.3) 4.5 (2.7) per OVe Insurance Use, N (%) Private only 5 (29.4) 4 (5.0) 7 (13.0) 6 (12.0) 1 (2.6) 8 (15.4) Medicaid only 7 (41.2) 41 (51.3) 18 (33.3) 24 (48.0) 20 (51.3) 35 (67.3) Medicare only − 2 (2.5) 5 (9.3) − − − Private + Medicaid 4 (23.5) 23 (28.8) 10 (18.5) 9 (18.0) 11 (28.2) 5 (9.6) Private + Medicare − − 2 (3.7) − − − Medicaid + Medicare 1 (5.9) 7 (8.8) 11 (20.4) 1 (2.0) 6 (15.4) 2 (3.8) Private + Medicaid + Medicare − 2 (2.5) 1 (1.9) 10 (20.0) 1 (2.6) 1 (1.9) CSHCN (state-funded) − 1 (1.3) − − − 1 (1.9)
Total 332 46.7 22.6 (7.3) 106 (31.9) 59 (17.8) 51 (15.4) 98 (29.5) 94 (28.3) 80 (24.1) 83 (25.0) 65 (19.6) 46 (13.9) 14 (4.2) 217 (65.4) 136 (41.0) 59 (17.8) 52 (15.7) 46 (13.9) 11 (3.3) 18 (5.4) 14 (4.2) 41 (12.3) 5.8 (5.4) 12.3 (15.1) 5.5 (5.5)
48 (14.5) 159 (47.9) 9 (2.7) 62 (18.7) 5 (1.5) 42 (12.7) 5 (1.5) 2 (0.6)
Abbreviations: BiPAP, bilevel positive airway pressure; CPAP, continuous positive airway pressure; CSHCN, children with special health care needs; GERD, gastroesophageal reflux disease; SD, standard deviation; a Total N is not the sum of the subgroups because further analysis was performed only on the five most populated primary diagnoses and medically fragile, as defined in the methods. b The age range at first TMC visit was 14 to 54 years old. c History of fractures since first TMC visit. d Non-office patient contact includes telephone calls, physician-patient emails, and prescription refills as documented in the electronic health record. e Physician-reviewed documents include reviewed medical records, letters of medical necessity, and physician order forms that cover home health care services, durable medical equipment, and medical supplies.
ondary diagnoses with the exception of obesity; 97% (N = 38) received Medicaid, and 51% (N = 20) also had Medicaid waiver services to help pay for durable medical equipment and nursing care. Genetic diagnoses included Williams syndrome, neurofibromatosis, Angelman syndrome, Turner syndrome, bladder exstrophy, Proteus syndrome, Rett syndrome, Canavan disease, Smith-Magenis syndrome, achondroplasia, CHARGE syndrome, Fragile X syndrome, and metabolic syndromes such as maple syrup urine disease and the mucopolysaccharidoses. Subgroup analysis of the five most common primary diagnoses and
medically fragile patients was performed for the same measures listed above and also summarized in Tables 1 and 2. Additionally, 37% (N = 20) of the patients with Down syndrome had thyroid disease, 46.3% (N = 25) had a heart condition, and 48.1% (N = 26) had sleep apnea. Of the 28 patients who did not have diagnosed sleep apnea, 82.1% (N = 23) had clinical symptoms of the disease reported in the EHR and only one patient had a documented negative sleep study. Furthermore, 25.0% (N = 13) of those with spina bifida had a history recurrent urinary tract infection.
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J.C. Berens and C. Peacock / Implementation of an academic adult primary care clinic for AYACCC Table 2 Specialty utilization in transition medicine clinic patients Autism Specialty, N (%) Cardiology Dermatology Endocrinology Gastroenterology Genetics Gynecology Hematology Infectious Disease Mental Health Providers Nephrology Neurology Neurosurgery Ophthalmology Orthopedic Surgery Otolaryngology Physical Medicine & Rehabilitation Physical/Occupational Therapy Pulmonology Rheumatology Urology Wound Care Total No. specialists per patient, mean (SD)a
3 (17.6) 1 (5.9) 1 (5.9) 2 (11.8) 3 (17.6) 5 (29.4) − 1 (5.9) 7 (41.2) − 2 (11.8) 1 (5.9) 4 (23.5) 2 (11.8) 4 (23.5) − 3 (17.6) − 1 (5.9) − − 2.6 (1.9)
Cerebral palsy Down syndrome 12 (15.0) 11 (13.8) 9 (11.3) 20 (25.0) 3 (3.8) 21 (26.3) − 7 (8.8) 9 (11.3) 1 (1.3) 40 (50.0) 12 (15.0) 12 (15.0) 22 (27.5) 14 (17.5) 27 (33.8) 32 (40.0) 19 (23.8) 2 (2.5) 7 (8.8) 3 (3.8) 3.9 (2.5)
35 (64.8) 7 (13.0) 12 (22.2) 10 (18.5) − 9 (16.7) 1 (1.9) − 13 (24.1) 1 (1.9) 6 (11.1) 1 (1.9) 4 (7.4) 3 (5.6) 8 (14.8) − 3 (5.6) 34 (63.0) − 1 (1.9) − 3.1 (1.9)
Genetic 16 (32.0) 6 (12.0) 6 (12.0) 19 (38.0) 17 (34.0) 14 (28.0) 3 (6.0) 3 (6.0) 10 (20.0) 2 (4.0) 17 (34.0) 5 (10.0) 7 (14.0) 14 (28.0) 9 (18.0) 8 (16.0) 14 (28.0) 14 (28.0) 4 (8.0) 6 (12.0) − 4.4 (2.5)
Medically fragile Spina bifida 8 (20.5) 4 (10.3) 4 (10.3) 14 (35.9) − 3 (7.7) 6 (15.4) 6 (15.4) 3 (7.7) 4 (10.3) 13 (33.3) 3 (7.7) 14 (35.9) 8 (20.5) 19 (48.7) 9 (23.1) 8 (20.5) 13 (33.3) − 7 (17.9) 1 (2.6) 5.3 (2.3)
6 (11.5) 6 (11.5) − 3 (5.8) − 7 (13.5) 2 (3.8) 5 (9.6) 5 (9.6) 8 (15.4) 10 (19.2) 15 (28.8) 4 (7.7) 11 (21.2) 4 (7.7) 11 (21.2) 15 (28.8) 9 (17.3) − 31 (59.6) 7 (13.5) 3.3 (2.0)
Total 109 (32.8) 43 (13.0) 42 (12.7) 70 (21.0) 31 (9.3) 71 (21.4) 18 (5.4) 28 (8.4) 58 (17.5) 26 (7.8) 96 (28.9) 36 (10.8) 48 (14.5) 64 (19.3) 52 (16.0) 58 (17.0) 89 (26.8) 100 (30.1) 23 (6.9) 56 (16.9) 14 (4.2) 3.8 (2.4)
Abbreviations: SD, standard deviation; a Number includes specialists not listed in this table, which only contains the 21 most commonly used specialists.
4. Discussion 4.1. Patient population The characteristics of the TMC patients posed specific challenges and opportunities. The population was diverse in age, with a range of 14 to 54 years old (average 22.6) at first clinic visit. The average and upper limit of age was much higher than expected for the age at transition to adult health care. Since none of the patients accepted into the TMC were receiving ongoing primary care from an adult health care provider, these findings confirmed the clinical observation that older patients with chronic childhood diseases were still receiving care from their pediatrician or had simply been without regular health care. The patient population also demonstrated geographical and racial diversity. Although not adequately documented in the EHR, the patients as a whole qualitatively reflected the fact that Houston is one of the most ethnically diverse large metropolitan areas in the country [22]. The patients’ geographical range of origin was quite expansive, reaching across multiple Texas counties and even into Louisiana. The vast majority of patients were heterogeneously distributed throughout 108 different zip codes of Harris County, which is the 3rd
most populous county in the country [23] and expands 1,703 square miles [24], larger than the state of Rhode Island. Having many patients who were not in close proximity to the TMC often led to more contact outside of office visits, and in a few cases, finding community physicians that could co-manage care closer to the patient’s home. Finding co-management opportunities proved difficult due to the complexity of the patients’ conditions, lack of disease familiarity by most community physicians, and the low rates of physicians accepting new patients with Medicaid. Familiarity with multiple health insurance modalities was crucial in delivering care to the TMC population. Knowledge of Medicaid eligibility and reimbursement rules was particularly important given the extremely disproportionate number of TMC patients receiving Medicaid, especially the patients in the medically fragile subgroup. The percentage of TMC patients on Medicaid was higher than described for pediatric patients with special health care needs having publically-funded health insurance [25]. A large number of distinct primary diagnoses were seen in the clinic. The diversity and number of rare cases is due mostly to referrals from TCH, a large tertiary referral center that frequently sees complex and uncommon cases. Many of these diagnoses, such as Proteus syndrome and maple syrup urine disease, are
J.C. Berens and C. Peacock / Implementation of an academic adult primary care clinic for AYACCC
exceedingly rare, especially in the adult population. As a result, the likelihood of finding suitable adult primary care was even lower, which contributed to the high number of patients utilizing the TMC as a medical home instead of as a transition program to a community adult primary care practice. In addition to the complexity and variety of primary diagnoses, all patients had multiple secondary diagnoses. It was important for TMC physicians to recognize the most common problems for several reasons. With such high frequencies of certain diagnoses, it was necessary to have a strong familiarity with the subsequent management and a strong relationship with relevant specialists, such as the need for a pulmonology referral to diagnose and manage sleep apnea. Some secondary diagnoses also put patients at risk for additional problems. For example, many patients used a wheelchair, had vitamin D deficiency, took anticonvulsants, and had an intellectual disability, all of which are known risk factors associated with osteoporosis [26,27]. Several of the TMC patients with these risk factors experienced long bone fractures, which demonstrate an important emerging trend requiring the development of best practices for management and screening. There was an especially high prevalence of sleep apnea in the Down syndrome population. Screening for sleep apnea in patients with Down syndrome is recommended clinical practice throughout the lifespan [28], but the prevalence of sleep apnea in adults with Down syndrome is less well established. One study found that over 90% of these individuals had sleep apnea [29]. In the TMC, only about half of the patients with Down syndrome had an official diagnosis of sleep apnea, but the near absence of negative studies and high incidence of clinical signs in undiagnosed patients suggests that the prevalence may be much closer to 90%. Further investigation is warranted, but preliminary data suggest more vigorous screening for sleep apnea may be needed for all patients with Down syndrome once they reach adulthood. Although nearly two-thirds of TMC patients had an intellectual disability, there was a wide range in the level of disability. This diagnosis adds another level of care coordination that requires more family involvement and the need for more proactive management or “health checks” [30]. It also has implications for women’s health issues and contraceptive use [31], as well as for legal issues such as guardianship and medical decision-making. The TMC encountered these issues routinely.
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4.2. Resource usage Many patients rely on medical technology, so TMC physicians need to be familiar with the management of various medical devices, like gastrostomy tubes, ventilators, and CPAP. Device management includes recognizing potential device malfunctions – such as with a VP shunt or baclofen pump – and being attuned to the risk of developing infection with use of indwelling devices. For example, the subgroup of patients with spina bifida, who had high rates of urinary catheterization (69%), also had a high incidence of recurrent urinary tract infections (25%). In addition to medical devices, 41% of TMC patients used wheelchairs. To accommodate patients in wheelchairs or on stretchers, the clinic is handicap accessible with large exam rooms, Hoyer lifts, wheelchair scales, and handicap-accessible exam tables. The TMC physicians routinely assess patients for associated problems – such as skin breakdown – as well as for their risk of developing osteoporosis or a fracture. TMC patients saw an average of 3.8 specialists. The number was higher (5.3) for the medically fragile subgroup, consistent with the criteria for medically fragile/complex youth outlined in a previous study looking exclusively at a pediatric population [21]. Moreover, these numbers are likely underestimates since they partially relied on patient report. Nonetheless, the data show a heavy utilization of a vast number of specialists that qualitatively varies by primary diagnosis. Frequency of specialist use was also indicative of the level of coordination and follow-up the clinic performed as a medical home. Each of the pediatric specialists that TMC patients still utilized required its own transition to adult specialty care. Time was spent counseling how to best approach each transition, and the TMC often served as a referral center to adult specialists known to provide excellent care to this patient population. Given the large number of specialists used, the varied and often uncommon primary diagnoses, the numerous secondary health concerns, device management, high rates of Medicaid insurance, and the diverse geographical and cultural origins of the patient population, it comes as no surprise that a large amount of care coordination was required. Physicians spent increased time with patients during clinic visits in addition to a substantial amount of clinical resources used between visits. On average, there were 6 physician-reviewed documents and more than a dozen instances of NOPC (telephone calls, emails, or prescription refills) in between each visit. The latter number is nearly four times
10
J.C. Berens and C. Peacock / Implementation of an academic adult primary care clinic for AYACCC
that of one study’s estimate for general adult primary care [32]. Due to the amount of time and effort spent on coordination, physicians spend a half-day in direct patient care and the remaining half-day managing ongoing patient care issues. At present, there has not been much data collected to analyze outcomes and overall cost savings of the TMC, so future projects will need to examine these measures. To be sustainable and widely applicable, a clinic like the TMC will need to continue to increase patient satisfaction, improve quality and outcomes, and validate cost savings [33]. Presently, the TMC remains a demonstration of one of the first successfully implemented and sustained clinics providing a medical home to the population of AYACCC in most need of high-level health care and resource coordination.
has utilized on-the-job training for its physicians and other health care providers. While Med-Peds trained physicians certainly receive appropriate training during residency to care for AYACCC, there are simply not enough interested physicians with this background to adequately meet the growing demand. Curriculum development regarding care for this patient population is needed for all health care disciplines and across all levels of trainees. While other barriers exist, it is imperative to continue to explore innovative and alternative models of care delivery as dictated by local circumstance, to document these attempts, and to evaluate their outcomes.
4.3. Other considerations
Transitioning from the world of pediatric to adult medicine is not easy, especially for those with chronic childhood conditions. The literature has identified numerous barriers to a seamless transition into the adult health care system, including poor reimbursement for transition planning, lack of knowledgeable adult health care providers, and labor-intensive care coordination. One potential solution is described in this article: an academic adult health care clinic targeting some of the most complex childhood conditions. Due to the lack of appropriate care in the community, it acts primarily as a medical home, but also co-manages care or acts as a consultative service for a small minority of patients. Because the clinic is situated in an academic center, it is staffed with the help of health care trainees. TMC patients are diverse in geographical origin and diagnosis. Most of these patients have Medicaid, have various associated diagnoses including intellectual disability, and require care from multiple specialists. Many of them rely on medical technology and need extensive clinical and community resources. The TMC provides extended office visits and employs a full time social worker, and TMC physicians spend equal time on direct patient care and management of care coordination. As a result, multiple sources of funding outside of standard insurance reimbursements were required for clinic operations and independent sustainability is unlikely without enhanced compensation from both private and public health insurance. While data collection is ongoing to demonstrate the TMC’s effect on quality outcomes and cost savings, it is an example of a successfully implemented and sustained clinic serving the complex needs of AYACCC. Clinics similar to the TMC could help establish adult clinical practice
The model of care delivery for AYACCC described here was the natural product of local circumstances; so factors affecting its generalizability must be considered. The TMC’s affiliation with TCH, a large regional and national referral center, provides a significant number of patients with complex and often rare conditions that may be unable to transition to typical adult primary care. Furthermore, the formation of the TMC would not have been possible without the support of both pediatric and internal medicine departments at BCM. The initial momentum and interest in creating such a clinic was largely due to the interests and passions of a few individuals. The college also has a wellestablished Med-Peds program that allows the clinic to be staffed by well-equipped, combined-trained faculty, in addition to numerous healthcare providers intraining. As mentioned above, the clinic also required grant funding and other institutional support and is not independently financially sustainable under the current models of reimbursement. It will be critical to demonstrate improved care quality and overall cost savings, due at least in part to reduced emergency room visits and hospital admissions. These outcomes will be especially important as the health care system moves away from fee-for-service and toward bundled payment models. Lastly, it is important to consider more widely applicable solutions. There is not currently any ACGMEaccredited post-graduate medical training specifically addressing transition health care or health care for this population of patients as adults. As a result, the TMC
5. Conclusion
J.C. Berens and C. Peacock / Implementation of an academic adult primary care clinic for AYACCC
guidelines for patients with spina bifida, cerebral palsy and numerous other pediatric-onset conditions and develop curriculum to train community adult healthcare providers. It will take a coordinated, collaborative effort to demonstrative innovative care delivery models and provide the necessary health care that this unique population so desperately needs.
[11]
[12]
[13]
Acknowledgement We would like to acknowledge Betty L. Ligon for manuscript editing.
Conflict of interest
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[15]
The authors have no conflict of interest to declare.
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