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Successful Use of a Primary Care PracticeSpecialty Collaboration in the Care of an Adolescent With Chronic Fatigue Syndrome Dennis Z.

Kuo, Tina L. Cheng and Peter C. Rowe Pediatrics 2007;120;e1536 DOI: 10.1542/peds.2007-0493

The online version of this article, along with updated information and services, is located on the World Wide Web at:
http://pediatrics.aappublications.org/content/120/6/e1536.full.html

PEDIATRICS is the official journal of the American Academy of Pediatrics. A monthly publication, it has been published continuously since 1948. PEDIATRICS is owned, published, and trademarked by the American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk Grove Village, Illinois, 60007. Copyright 2007 by the American Academy of Pediatrics. All rights reserved. Print ISSN: 0031-4005. Online ISSN: 1098-4275.

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EXPERIENCE & REASON

Successful Use of a Primary Care PracticeSpecialty Collaboration in the Care of an Adolescent With Chronic Fatigue Syndrome
Dennis Z. Kuo, MD, MHSa, Tina L. Cheng, MD, MPHb, Peter C. Rowe, MDb
aMaple Avenue Pediatrics, Fair Lawn, New Jersey; bDivision of General Pediatrics and Adolescent Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland

The authors have indicated they have no nancial relationships relevant to this article to disclose.

ABSTRACT We report on the successful collaborative care of an adolescent with chronic fatigue syndrome between a primary care pediatrician and an academic chronic fatigue syndrome specialist located in different cities. Regular telephone and e-mail communication and clearly dened patient-care roles allowed for timely management of symptoms and marked clinical improvement. We discuss ways to improve the collaboration of primary care and subspecialty physicians for patients with chronic fatigue syndrome and children with special health care needs.

HE AMERICAN ACADEMY of Pediatrics has endorsed the medical home as the primary care standard of providing care for children with special health care needs (CSHCN), with such care being accessible, family centered, continuous, comprehensive, coordinated, compassionate, and culturally effective.1 CSHCN currently comprise 12.8% of children, yet only 52.6% of families with CSHCN report having a medical home.2,3 CSHCN without a medical home report additional delayed or forgone care and more unmet needs for health care or familysupport services.2 Current areas of deciency in provision of the medical home are seen in family-centered care, care coordination, and obtaining referrals for subspecialty care.2,4 Primary care physicians (PCPs) are essential to the medical home, because many chronic conditions are low in severity yet require frequent access to a physician, a care plan developed within the context of family and community, and care coordination of subspecialty and community services to ensure comprehensive and quality health care.59 Although the overall supply of general pediatricians is ample,10 ongoing barriers to the medical home include lack of time, ofce understafng, poorly dened roles played by different providers, and inadequate reimbursement for care-coordination activities.9,11,12 Coordinated-care difculties are compounded by insufcient numbers and geographical maldistribution of pediatric subspecialists, which results in long waits for appointments and limited patient-care time.13,14 Variation in subspecialty referral rates have been attrib-

uted to individual provider and health care system characteristics rather than different patient medical needs15; thus, primary care provider training and collaborative care may potentially decrease the burden on subspecialists and improve the medical home. Chronic fatigue syndrome (CFS) has been dened as persistent or relapsing fatigue over at least 6 consecutive months and including at least 4 of the following symptoms: memory or concentration impairment, sore throat, tender cervical or axillary lymphadenopathy, muscle pain, joint pain, headache, unrefreshing sleep, or postexertional malaise.16 A recent study of British adolescents placed the incidence of fatigue at 30.3%, chronic fatigue at 1.1%, and CFS at 0.5%.17 Adolescents with chronic fatigue report high functional impairment that results in prolonged school absence, psychological disturbances, and signicant social impact.18 The etiology of CFS is unknown but is likely multifactorial, with infectious, immune, endocrine, autonomic, connective tissue, and
Key Words: chronic fatigue syndrome, primary health care, disabled children, patientcare team, referral and consultation Abbreviations: CSHCN, children with special health care needs; PCP, primary care physician; CFS, chronic fatigue syndrome www.pediatrics.org/cgi/doi/10.1542/peds.2007-0493 doi:10.1542/peds.2007-0493
Accepted for publication May 17, 2007 Address correspondence to Dennis Z. Kuo, MD, MHS, Johns Hopkins University School of Medicine, Division of General Pediatrics and Adolescent Medicine, 200 N Wolfe St, Baltimore, MD 21287. E-mail: dkuo5@jhmi.edu PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). Copyright 2007 by the American Academy of Pediatrics

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neuromuscular etiologies being hypothesized and requiring the evaluation and comanagement by multiple subspecialty services.1922 No standardized care exists,23 and outcomes in response to different therapeutic regimens have not been well studied, which possibly reects heterogeneity within those with CFS.2426 Care coordination by and an excellent relationship with the PCP are crucial to improvement.22,2729 Here we report on the collaboration between a full-time PCP and an academic chronic fatigue specialist as a model of primary care specialty collaboration for CSHCN that allows for successful management of an adolescent with CFS. CASE REPORT The patient was a 15-year-old girl who presented as a new primary care patient to Dr Kuo (the PCP). Two months before presentation she had several syncopal episodes that occurred at the time of menses. Subsequent persistent fatigue led to an inconclusive 4-day inpatient stay managed by a different physician. Her syncope was investigated with a tilt-table test ordered by a cardiologist. Her baseline supine blood pressure was 117/64 mm Hg, but it dropped to 57/31 mm Hg 7 minutes into a 70 head-up tilt-table test, which resulted in a provisional diagnosis of neurally mediated (neurocardiogenic) syncope. A 10th-grader, she had not attended school for several weeks as a result of the fatigue. Her medical history was remarkable for mild, asymptomatic pulmonary stenosis and a 2-year history of light-headedness during menstrual periods, for which she had been advised to drink orange juice (as treatment for possible hypoglycemia). On review of symptoms she reported headaches, fatigue with exercise, excessive sleeping, sore throat, cold hands and feet, and heavy menses but denied any new stressors or depressed mood. On examination she was alert and in no distress, and her vital signs were normal. Results of the physical examination were unremarkable, as were the results of laboratory work, including a normal complete blood count, chemistries, thyroid-function tests, and Epstein-Barr virus titers. Initial management consisted of salt tablets and midodrine prescribed by her cardiologist. Oral contraceptives prescribed by her gynecologist reduced the heavy menses, but the fatigue remained. Other subspecialty consultations for rheumatology, endocrinology, neurology, and mental health were obtained, but these consultations ended with negative evaluation results and return of management to the PCP. After 6 months, the patients symptoms satised criteria for a diagnosis of CFS. Orthostatic intolerance as a cause of CFS symptoms in adolescents has been reported.3032 The PCPs literature review of CFS and circulatory dysfunction led to a 20minute telephone consultation with Dr Rowe, director of the chronic fatigue clinic in a tertiary care center. Because of the distance and long wait for an appoint-

ment, in-person consultation was deemed impractical. However, the specialist felt that optimal management would be achieved with the PCP continuing comprehensive primary care and gradually assuming primary management of the patients CFS to manage symptoms in a timely and effective manner. Specic roles for collaboration were discussed. The PCP would perform regular assessments, dispense medications, manage acute episodes of fatigue, and coordinate services, and the specialist would assess the patients expected long-term course, educate the PCP on potential therapies, and consult by e-mail or telephone as needed. The specialist mailed information regarding CFS and potential therapies to the family and PCP, who were agreeable with the collaboration. A regular consultation schedule was not agreed on initially, but telephone and e-mail contact continued approximately twice per year. Primary care follow-up continued approximately every 3 months, with monthly telephone management in between and as needed on the basis of symptoms. Reassurance was provided by the specialists familiarity with the described history. Initial recommendations consisted of manual physical therapy and a higher-salt diet. Midodrine was discontinued because of its lack of effect. Ongoing discussion with the school principal and nurse resulted in a reduction of her class schedule, and accommodations in the classroom and standardized testing were made. Home tutoring was arranged to make up the time she missed in school. The patient was able to return to school for 3 periods per day by the end of 10th grade but continued to suffer relapses of debilitating fatigue. Halfway through the 11th grade, the patient had a severe episode of fatigue after an upper respiratory infection and was unable to attend school. She saw the PCP after 1 week, and a telephone consultation with the specialist was obtained. The patient was started on 30 mg/day of dextroamphetamine and 50 mg/day of sertraline, with plans for boluses of intravenous 0.9% saline during intercurrent illnesses to minimize exacerbations of hypotension.3336 Improvement was noted in her symptoms, and she returned to a half-day of school after 2 weeks. Two months later, the patients mother called the PCP to report 2 days of severe fatigue after a viral infection and heavy menses. The patient received intravenous saline at a community emergency department, with the mother reporting night-and-day improvement and the patient being able to return to school. By 12th grade she was missing only rst period. She tolerated discontinuation of sertraline at the end of 12th grade and subsequently enrolled full-time at a 4-year college. She continues on dextroamphetamine but reports that the fatigue has subsided completely and plans to wean off the dextroamphetamine at the end of the next academic year.
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DISCUSSION PCPs desire a collaborative relationship with specialists when making most referrals,37 and close involvement of generalists in specialty care has led to more cost-effective care and better health.6 In a recent report, the Federal Expert Work Group on Pediatric Subspecialty Capacity38 described existing efforts to improve the primary care specialty care interface; examples include Title Vsupported telephone consultations to pediatric subspecialists by medical home providers, service partnership agreements that delineate referral criteria and quality assurance agreements, and multidisciplinary team management. Shared-care and comanaging arrangements with the PCP prescribing medicine and treatment protocols recommended by subspecialists have been described,3941 and telemedicine has been used in a variety of settings to increase access to specialists.42,43 Such arrangements are particularly important in rural areas, where specialized care may be available at great distances from the patients home, leading to the need for an ongoing clinical and educational link.44 CFS presents a particular challenge, in part because CFS has a relatively high prevalence in adolescents and there are few practitioners with a specic interest in CFS. Although in previously described comanagement arrangements the consulting specialist was expected to primarily manage the chronic condition,8 a key aspect of our collaboration was the expectation that the PCP would gradually assume responsibility for managing an unfamiliar condition. The collaboration was initially time-intensive, with the initial telephone consultation and review of written materials by the PCP and family, but communication over the next 18 months consisted of several e-mail messages and an additional 30-minute scheduled telephone consultation. Condence by the PCP was gained in management of both chronic fatigue and orthostatic intolerance; such increase in knowledge and condence has been reported in a primary caremental health collaboration.45 Unaddressed challenges include a lack of reimbursement for consultation time, lack of written records provided to the specialist, and a need for clarication of the level of liability for the patient borne by the specialist, who did not see or examine the patient in person. CONCLUSIONS Our report outlines key aspects of care coordination of CSHCN in a medical home, as well as key aspects of successful primary carespecialty collaboration. Similar arrangements should be explored to alleviate the problems posed by the limited access to pediatric subspecialists and to expand the benecial roles of the medical home for CSHCN. In such arrangements, the roles of all collaborating physicians and professionals should be claried at the beginning of the relationship, and there should be understanding and acceptance by the family of such an arrangement. The strengths of the medical
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home and the role of the PCP should be recognized and respected, as well as the potential for the PCP to increase primary management of the medical condition. Effective, secure communication channels such as telephone, e-mail, and video conferencing should exist to ensure timely exchange of information, and communication skills, networking efforts, and leadership training may be benecial to encourage effective coordinated care.6,46 Adequate reimbursement should be offered for time spent on telephone consultation, care-plan development and oversight, and prolonged service.9 Additional study needs to be conducted on the efcacy and cost-effectiveness of such collaborations. ACKNOWLEDGMENT Dr Kuo is currently supported by a training grant from the National Research Service Award. REFERENCES
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PEDIATRICS Volume 120, Number 6, December 2007

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Successful Use of a Primary Care PracticeSpecialty Collaboration in the Care of an Adolescent With Chronic Fatigue Syndrome Dennis Z. Kuo, Tina L. Cheng and Peter C. Rowe Pediatrics 2007;120;e1536 DOI: 10.1542/peds.2007-0493
Updated Information & Services References including high resolution figures, can be found at: http://pediatrics.aappublications.org/content/120/6/e1536.full. html This article cites 40 articles, 12 of which can be accessed free at: http://pediatrics.aappublications.org/content/120/6/e1536.full. html#ref-list-1 This article, along with others on similar topics, appears in the following collection(s): Community Pediatrics http://pediatrics.aappublications.org/cgi/collection/communit y_pediatrics_sub Medical Home http://pediatrics.aappublications.org/cgi/collection/medical_h ome_sub Adolescent Health/Medicine http://pediatrics.aappublications.org/cgi/collection/adolescent _health:medicine_sub Information about reproducing this article in parts (figures, tables) or in its entirety can be found online at: http://pediatrics.aappublications.org/site/misc/Permissions.xht ml Information about ordering reprints can be found online: http://pediatrics.aappublications.org/site/misc/reprints.xhtml

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PEDIATRICS is the official journal of the American Academy of Pediatrics. A monthly publication, it has been published continuously since 1948. PEDIATRICS is owned, published, and trademarked by the American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk Grove Village, Illinois, 60007. Copyright 2007 by the American Academy of Pediatrics. All rights reserved. Print ISSN: 0031-4005. Online ISSN: 1098-4275.

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