563926

research-article2014

CPJXXX10.1177/0009922814563926Clinical PediatricsSadof et al

Brief Report

The “HEADS AT” Training Tool for Residents: A Roadmap for Caring for Children With Medical Complexity

Clinical Pediatrics 2015, Vol. 54(12) 1210­–1214 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0009922814563926 cpj.sagepub.com

Matthew Sadof, MD1, Michele Gortakowski, MD1, Barbara Stechenberg, MD1, and Stephanie Carlin, DO1 Introduction It is estimated that 13% of the pediatric population comprises children who meet the Maternal Child Health Bureau definition of special health care needs, accounting for 70% of pediatric health care expenditures. A subset of this population, children with medical complexity (CMC), is identified by high service need, medical condition associated with medical complexity, functional limitations, and high health care use.1 This subset is estimated to comprise almost 1% of the pediatric population and 33% of the cost of pediatric health care.2 Given the high cost and complexity of this target population, innovations are required in the Affordable Care Act for better health, better outcome, and lower cost for these superutilizers. The American Academy of Pediatrics advocates that all children be provided with a medical home based on the partnership between physicians, families, and the community to provide coordinated, continuous, familycentered care. In fact, several studies have shown that family-centered, coordinated care and an effective medical home improve outcomes for CMC.2,3 The care of CMC can span across multiple specialties, institutions, and geographical areas, creating challenges for primary care providers, specialists, and family members. Often, poorly defined roles and responsibilities result in gaps in health information, causing avoidable morbidity and excessive health care use. Strategies to address this problem include enhancement of primary care practices with specialized personnel to assist with care coordination and the creation of outpatient clinical programs dedicated to CMC. A key component of any ideal service delivery model for CMC is having at least one provider who comprehensively understands and is capable of addressing all of a child’s health problems, issues, and needs.2 It is essential that physicians in training have adequate exposure to CMC and experience effective and comprehensive care coordination. Residents in training who frequently care for this group of children are challenged by their inability to

coordinate the high level of health care needs, specialty care services, and home and community services required by CMC. In fact, a recent report found that pediatric residents in Massachusetts would benefit from additional tools and skills relevant to caring for CMC, especially in the outpatient setting, in order to become more comfortable in collaborating with families, community agencies, and schools and in identifying community resources.4

Methods The report will describe the development of the HEADS AT tool that is designed to enhance resident physicians’ ability to coordinate care in both a continuity primary care setting and an outpatient center dedicated to improving the care of CMC. Baystate Medical Center, in Springfield, Massachusetts, is an academic, research, and teaching hospital that serves as the Western clinical campus of Tufts University School of Medicine. Housed within Baystate Medical Center, the Baystate Children’s Hospital is the only accredited children’s hospital serving Western Massachusetts. The Children’s Hospital provides a comprehensive range of children’s primary care and subspecialties, along with pediatrics and combined internal medicine-pediatrics residency programs. Baystate High Street Health Center Pediatrics houses the categorical pediatrics residency continuity clinic. The clinic has 6700 patients and sees 23 000 visits per year. In 2012, an attending pediatric physician (MS) began to cohort children in the community with medical complexity gathered from a Title V care coordination

1

Tufts University School of Medicine, Springfield, MA, USA

Corresponding Author: Matthew Sadof, Tufts University School of Medicine, Western New England Campus located at Baystate Children’s Hospital, 140 High Street, Springfield, MA 01199, USA. Email: [email protected]

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Sadof et al program into a single session a week. During this time, interested residents from pediatrics, internal medicine, the combined medicine pediatric programs, and medical students participated in the clinic. At the end of each clinic, the attending physician engaged in a discussion with the physician trainee. This informal debriefing included the following questions: What did you learn? What went well? What did not go well? What could be done to improve the experience?

Results A curriculum was developed by using articles from Pediatrics in Review and other sources to better understand the issues confronting these patients and to facilitate pediatric board exam preparation. The selection of the curriculum was also driven by comments generated from the informal debriefing sessions at the end of each clinic. This curriculum (Table 1) was placed on our intranet site for easy access. Trainees are encouraged to read these articles before and after attending the clinic. The HEADS AT review for CMC (HEADS AT) was also developed from these discussions as a roadmap to help physicians in training better address the comprehensive needs of CMC (Table 2). This tool is available on paper as an interview tool and electronically to help guide the creation of clinic notes and care plans by attending and resident physicians. The HEADS AT is an adaptation of HEADSS psychosocial review for adolescents.5 This tool covers 7 spheres of the life of children with medical complexity: home, education, activities, development/mental health, specialist review, ancillary services, and transitions. In each sphere, the user performs a SNAP assessment, noting the Status, Needs, Available Resources, and Plans.

Components of the HEADS AT Tool Home This section of the review encompasses a description of the current home setting, giving us an understanding of the family’s ability to meet the needs of the CMC. It starts off by an assessment of who makes up the home and then prompts the resident to take a conversational walk through the patient’s day to assess the activities of daily living. This process helps identify needs (equipment and personnel) that will better serve the CMC. Feeding and bowel regimens can be included here.

Education A review of age-appropriate education in this section includes identifying the site of education and measures of performance. It also includes assessment of accommodations being made for disability (Section 504 of the civil rights law preventing discrimination of persons with physical or mental disability that substantially limits one or more life activities), ensuring compliance with the individualized family service plan for early intervention in children younger than 3 years and the individualized educational plan for children older than 3 years in the school system (free and appropriate education in the least restrictive environment), ensuring that adequate occupational and physical therapy is occurring, including augmentative communication devices.

Activities Families and CMC often experience isolation. This portion of the tool assesses how they connect with local support groups and recreational activities designed for CMC and their families.

Development/Mental Health To help CMC, it is important that a developmental assessment be obtained by the school and/or a developmental pediatrician. CMC and their families can struggle with mental health and substance issues and unfortunately can be a target of bullying.

Specialist Review This is an opportunity for the physician to coordinate care between specialty services, mediate conflicting services, coordinate testing, update medications and changes in treatment plans, and clarify upcoming appointments. Feeding and bowel regimen can also be discussed here.

Ancillary Services Community agencies and home health services associated with the patient can be identified here.

Transitions As the CMC ages, so do their educational and vocational needs. An understanding of the CMC and families’ vision of the future is necessary. Transition from pediatric to adult-centered care requires discussions around guardianship, independence, and ability to understand

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Table 1.  Curriculum Guide for Children With Medical Complexity. Medical Need

Subtopics

Introduction Needs of adolescents and young adults and transition to adult care    

Care of children assisted by technology          

Overview Mobility Feeding

Tracheostomy School Movement disorders

Palliative care Social complexity

Resources Sadof M, Nazarian B. Caring for children who have special health care needs: a practical guide for the primary care practitioner. Pediatr Rev. 2007;28:e36-e43 Burns JJ, Sadof M, Kamat D, The adolescent with a chronic illness or condition. Ann Pediatr. 2006;35:207-213 Massachusetts Department of Public Health (MDPH), Massachusetts Department of Developmental Services (MDDS). Healthy relationships, sexuality and disability resource guide 2013. http://www.mass.gov/eohhs/ docs/dph/com-health/prevention/hrhs-sexuality-and-disability-resourceguide.pdf Got Transition 2.0. http://www.gottransition.org/providers/index.cfm. Accessed April 20, 2014 Glader LJ, Palfrey JS. Care of the child assisted by technology. Pediatr Rev. 2009;30:439-445 Palisano R, Rosenbaum P, Bartlett D, Livingston M. Gross motor function classification syst-em: expanded and revised. http://motorgrowth.canchild. ca/en/gmfcs/resources/gmfcs-er.pdf Phalen JA. Managing feeding problems and feeding disorders. Pediatr Rev. 2013;34:549-557 A parent’s guide to feeding tubes. http://www.feedingtubeawareness. com/A_Parent_s_Introduction_to_Tube_Feeding__Apr_2014.pdf Aaron’s tracheostomy page. http://www.tracheostomy.com Porter SM, Page DR, Somppi C. Emergency preparedness in the school setting for the child assisted by medical technology: tracheostomies, ventilators, and oxygen. NASN Sch Nurse. 2013;28:298-305 Zinner SH, Mink JW. Movement disorders I: tics and stereotypies. Pediatr Rev. 2010;31:223-233 Mink JW, Zinner SH. Movement disorders II: chorea, dystonia, myoclonus, and tremor. Pediatr Rev. 2010;31:287-229 Korones DN. Pediatric palliative care, Pediatr Rev. 2007;28:e46-e56 Szilagyi M. The pediatric role in the care of children in foster and kinship care. Pediatr Rev. 2012;33:496-503

and self-manage illness. End-of-life and palliative issues may also need to be addressed.

Discussion One of the recurrent themes in the postclinic feedback sessions was a need to better document the care of CMC in our existing electronic health record. The information regarding the children’s health care needs and services was found to be fragmented, documented in separate places in the electronic health record, or not at all. The trainees identified that a unified, electronic health record–based snapshot of all the health care needs of the child could help create proactive plans of care to maximize the health of the child and to address future health problems before they occur. An IRB-approved survey of the resident physicians is being used to convert this tool to a

user-friendly tool in our electronic health record. This process includes a questionnaire that explores notetaking preferences of the resident physicians and the Likert-based scale that explores the level of comfort in caring for CMC used in the previous Massachusetts study.4 This questionnaire will be administered before and after the creation of the note to measure its effect on improving resident physicians’ comfort when caring for CMC. The clinic will be expanded to 2 sessions a week. Residents will be attending this clinic as part of their developmental pediatrics and community pediatrics rotations. Incoming residents will be assigned a CMC that they will follow throughout their time at our institution. Plans are under way to develop a regional consultative model for CMC in regional medical homes. CMC who attend the clinic will have a care plan designed to keep patients’ care coordinated and close to their homes.

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Sadof et al Table 2.  HEADS AT Tool. Status

Needs, Available Resources, Plans

Home Who lives there? Do folks get along with each other ADLs, continence, bowel regimen, feeding, mobility, transportation issues can be identified by taking a conversational walk through the day What services are in the home? Do they meet the current need? What equipment is in the home ?Does it meet the current need? Education Early intervention Individualized educational plan 504 Plan Adaptive communication Occupational therapy Physical therapy Activities Interests Peers Socialization Development/Mental health How is the patient coping? How are the family members doing? Bullying? Abuse? Romance? Depression? Agitation? Alcohol tobacco other drugs of abuse? Specialists (last/next visit, highlight major issues) Neurology, pulmonology, gastroenterology, urology, orthopedics, cardiology, other Ancillary services Agencies Transition/Goals Future vision Guardianship /Will Knows meds Knows about illness



Abbreviation: ADLs, activities of daily living.

Conclusion Effective care coordination in medical homes has been shown to be highly effective in slashing hospital costs in half or more by increasing access to primary and specialty care and addressing unmet health and social

needs of CMC and their families.2 Physicians practicing in well-functioning medical homes in the era of the Affordable Care Act need a quick and easy-toremember guide to ensure that the global needs of these CMC are being addressed that does not rely on the electronic health record template because these

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often vary between institutions. The HEADS AT tool is an easy, replicable solution to address the problem of delivering care to CMCs in a pediatric residency program that can be brought to practice after training is completed. Acknowledgment The authors would like to acknowledge Mindy Domb’s contribution in the conceptual framework of the “HEADS AT” training tool for residents.

Author Contributions MS created the complex care clinic, lead concept development and contributed to the writing of the manuscript. MG was the resident physician liasion to the project and contributed to some of the background research of the manuscript, contributed to the writing of the manuscript. BS provided guidance to curriculum development and contributed to the writing of the manuscript. SC provided guidance to curriculum development, clinic structure and contributed to the writing of the manuscript

Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.

References 1.  Cohen E, Kuo DZ, Agarwal R, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011;127:529-538. 2.  Berry JG, Agrawal RK, Cohen E, Duo DZ. The landscape of medical care for children with medical complexity. http://www.childrenshospitals.net/cmclitreview. Accessed July 5, 2013. 3.  Kuhlthau KA, Bloom S, Van Cleave J, et al. Evidence for family-centered care for children with special health care needs: a systematic review. Acad Pediatr. 2011;11:136-143. 4.  Nazarian B, Choueiri R, Shipman D, Glader L, Sadof M. Identifying what pediatric residents are taught about children and youth with special health care needs and the medical home. Pediatrics. 2010;126(6, suppl 3):S183-S189. 5.  Goldenring JM, Rosen DS. Getting into adolescent heads: an essential update. Contemp Pediatr. 2004;(21):64-90.

Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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The "HEADS AT" Training Tool for Residents: A Roadmap for Caring for Children With Medical Complexity.

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