Telehealth and Transition: Will the two “Ts” ever cross? Sandra L. Whisler, M.S., M.D.1, Jennifer Benson, M.D.2, Lourdes Vizcarra, M.D.3, Jennifer DiTucci, R.D., L.D.1,

Adrian Rodriguez4, and Mario Torres, BBA5

Departments of Pediatrics1, Internal Medicine2, Family and Community Medicine3, UNM Center for Telehealth4, and UNM Center for Developmental Disabilities5

UNM SOM, 2211 Lomas Blvd NE, Albuquerque, NM, 87131

INTRODUCTION New Mexico is mostly a rural state. Patients must sometimes travel great distances to get medical care. In NM it is estimated 71,000 children and adolescents have a chronic illness and 5,000 of these individuals have a significant disability. About 2,200 live in the Albuquerque Metropolitan area. (1) Most of the advanced medical care is found in the Albuquerque Metropolitan area. Other statistics comparing the numbers of Children with Special Health Care Needs (CSHCN) in the state of New Mexico with the nation can be seen in Table 1. In the fall of 2010 the UNM Transition Consultative Clinic (TCC) opened its doors to Youth with Special Health Care Needs (YSHCN). The TCC was devised to assist families, their pediatric PCP (Primary Care Providers) and their receiving adult PCP in meeting the challenge of providing coordination of care for their young adults with Special Needs who are starting the transition process. The Transition Consultative Clinic (TCC) helped “package” the patients so that the new adult primary care provider would not have to spend hours reviewing the patient’s chart and could start addressing the patient’s needs at the very first visit. Help for transitioning Children and Youth with Special Health Care Needs (CYSHCN) is needed all over the state but the actual Transition Consultative Clinic (TCC) is located in Albuquerque. We piloted the utilization of Telehealth with our TCC from July 2012 to June 2013. !

METHODS The TCC was held the first and third Tuesdays of the month. Each patient had approximately a one hour appointment and 3 patients were scheduled for each clinic. On the first Tuesday of the month a Pediatrician and Internist saw patients with a Pediatric Nutritionist. On the third Thursday of the month a Pediatrician and Family Medicine physician saw patients with a Pediatric Nutritionist. A Nurse Case Manager was available at all of the clinics. From July 17, 2012 to June 18, 2013 the TCC pediatrician joined TCC in Albuquerque via Telehealth from New York City where she was on Sabbatical. Consents were given to the families asking them if they minded having the pediatrician join from New York City. Telehealth was conducted via a secure video connection. The clinic, where the patient, family, and team were located, used an H.323 video conferencing system. The doctor, in New York City, connected over the internet using a desktop video conferencing client installed on her computer. The desktop video conferencing system was interoperable with the H.323 system and connected via an encrypted channel. All of the families signed the consent to participate in Telehealth. Many of the adolescents actually enjoyed interacting with the pediatrician on the screen.

RESULTS

From July 17, 2012 through June 6, 2013, 16 Transition Consultative Clinics were held utilizing Telehealth. We had 14 of our Pediatric residents attend these clinics. A total of 43 patients were scheduled, 14 patients either no showed, cancelled, or rescheduled. The percentage of patients showing up for their appointments was 67%. The multitude of diagnoses of the Transitioned/Transferred patients are presented in Table 2.

TABLE 2 TRANSITIONED/TRANSFERRED PATIENTS

ADHD: Attention Deficit Hyperactivity Disorder, DD: Developmental Disabilities. CI: Cognitive Impairment, TBI: Traumatic Brain Injury. GERD: Gastroesophageal Reflux Disorder., CP: Cerebral Palsy, ID: Intellectual Disability

Developmental disabilities was the most common diagnosis. During the utilization of Telehealth, 12 patients completed the transition process and were transferred to adult providers. In the previous year when Telehealth was not utilized, we transitioned and transferred 13 patients.

DISCUSSION The availability of transition services has become very important for YSHCN because these patients are now living into adulthood. However, it is difficult to find primary care providers who are comfortable and willing to see these patients. We have started to address this problem in New Mexico by offering a Transition Consultative Clinic (TCC) where patients are “packaged” for the adult provider and families are given assistance to find adult primary care providers as well as other resources. Our TCC is also available to the receiving providers for help and recommendations concerning YSHCN. Offering transition services is crucial to the attainment of certain levels of the Patient Centered Medical Home designations. Due to the fact that New Mexico is an economically poor state and distances within the state are vast, we hope to expand this clinic to other areas of New Mexico via Telehealth in the future.

CONCLUSION Our experience utilizing Telehealth from New York City with our Transition Consultative Clinic in New Mexico was very successful. Adding a Telehealth component was not detrimental to the clinic or to the transition/transfer process. The Telehealth component seemed to be well received by patients and their families. The next step is to utilize Telehealth to bring the TCC to other parts of New Mexico. Telehealth may prove to be a viable option for transition/transfer of YSHCN in other rural states such as ours.

TABLE I NEW MEXICO PROFILE

Estimated Number of CSHCN: 70,725

Prevalence of CSHCN State % Nation % CSHCN Prevalence

Percent of children who have special health care needs 13.8 15.1 CSHCN Prevalence by Age

Age 0-5 years 8.6 9.3 Age 6-11 years 15.3 17.7 Age 12-17 years 17.9 18.4

CSHCN Prevalence by Sex

Male 15.9 17.4 Female 11.7 12.7

PATIENT   DATE   DIAGNOSES  1. A   8/7/12   Mood Disorder, Autism, Anxiety Disorder, ADHD,

DD  2. B   10/2/12   Edward's Syndrome, DD, CI, Neurogenic Bladder,

Constipation,  3. C   11/6/12   Seizures, TBI, GERD, DD, Constipation.

Osteoporosis  4. D   12/4/12   Type 2 Diabetes, Polycystic Ovarian Syndrome,

Trisomy 21, DD, Weight Issues, Hypothyroidism 5. E   12/4/12   Attention Deficit Disorder, Depression, Acanthosis

Nigricans, Obesity, DD  6. F   3/6/12   Spastic Right Hemiplegia, Cognitive Impairment,

DD, Seizures  7. G   1/29/13   DD, ID, Seizures, Left Hemiplegic CP  8. H   2/5/13   Spastic Quadriplegic CP, Seizure, Constipation,

Neuromuscular Scoliosis, DD, ID  9. I   2/19/13   Spastic Quadriplegic CP, Syringomyelia,

Neuromuscular Scoliosis, CI, DD  10. J   2/19/13   Lowe's Syndrome, DD, Renal Tubular Acidosis,

Chronic Renal Dis Stage III, ADHD  11. K   3/5/13   Down's Syndrome, Blindness, DD, ID, Autism  

12. L   4/30/13   Neurofibromatosisis II, Medulloblastoma, Meningioma, Bilateral Acoustic Schwannomas, DD  

ACKNOWLEDGEMENTS 1. We would like to thank Vanessa Pimentel, Javier Aceves, MD, Louise Wells, RN. CCM. and the UNM Westside Clinic for all of their help and support for TCC. 2. Partial support for this project was received from grant number D70MC24123, Integrated Community Systems for Children with Special Health Care Needs from the Health Resources and Services Administration (HRSA) through a sub-award from the New Mexico Department of Health.. 3 UNM Center for Telehealth, Albuquerque, NM.

REFERENCES 1. Aceves, Javier, M.D. “Transition of Adolescents with SHCNs into Adult-Based Medical Services”. UNM FCM Grand Rounds, June 2011 2. National Survey of Children with Special Healthcare Needs 2010

For Further Information Sandra L. Whisler, MD, MS

UNM Westside Clinic 4808 McMahon NW, Albuquerque, NM, 87114

Phone: 505-272-2900, Fax: 505-272-2909, E-mail: swhisler@salud.unm.edu