No Guts, No Glory: Models of Integrated Care within a GI Subspecialty Practice

Abstract

The focus in pediatric medicine has shifted from a concentration on mortality and morbidity to a more comprehensive view encompassing the physical, social, and psychological aspects of health. What follows is a description of four integrated, collaborative care clinics within the GI subspecialty at Children’s Mercy Kansas City that specifically address this trend in pediatric healthcare. With these descriptions, we hope to inform broader acceptance and utilization of similar models across other pediatric populations.

Introduction

Recent and mounting evidence suggests that biological and psychosocial factors are mutually determinant, and often interactive, in many disease processes. Consequently, the focus of health care in pediatrics has shifted from concentrating predominantly on mortality and morbidity to a more comprehensive view which encompasses the physical, social, and psychological aspects of health care.¹ Integrated health care models, also referred to as interdisciplinary or collaborative care, do just that; they bring together health professionals from various disciplines to establish comprehensive treatment plans that address the biopsychosocial needs of the patient. This approach to care is characterized by a high degree of collaboration between all health professionals in the assessment of patients, treatment planning and implementation, and outcome evaluation. Integrated care has been shown to reduce the stigma often associated with seeking help for mental health concerns,² improve communication and collaboration between mental health and medical providers,³ and enhance patient satisfaction.^{4, 5, 6} Additional evidence suggests that integrated care can facilitate patient access to services, ensure fewer gaps in services, improve quality of care, and lower overall health care costs.⁷

Integrated care recognizes that there is rarely one single cause of symptoms, but rather a number of biopsychosocial factors that can contribute to symptom onset, severity, and duration. Further, integrated care considers the interactions between biological, psychological, and social factors, rather than focusing on each area in isolation.⁸ For pediatric gastrointestinal disorders, for example, equal emphasis is given to the biology and physiology of the gut and its psychological and social correlates, all of which are essential for understanding the specific medical condition and treating it appropriately. As such, treatments are often comprised of a combination of medical and psychological/behavioral interventions that work in concert with one another to benefit the patient. Thus, in addition to utilizing various medications, pediatric patients and their families might be asked to make psychological/behavioral changes to promote healthier bowel habits and routines, improve sleep, and better manage stress. Similarly, families may be asked to change how they respond to their child’s symptoms, and school days may be restructured to decrease physical (and psychological) demands on children while, at the same time, ensuring ongoing opportunities for socialization and academic progress. Despite the growing evidence supporting a biopsychoscial conceptualization of many disease processes, highly integrated treatment programs remain rare in clinical practice. Below we review a few integrated programs currently in existence to serve GI populations at Children’s Mercy Kansas City, with the goal of highlighting common themes and clinic-specific approaches to delivering integrated care that may help to inform broader acceptance and utilization of similar models across other pediatric populations.

Models of Integrated Care Within GI Subspecialty Clinics at Children’s Mercy Hospital

Inflammatory Bowel Disease

The Inflammatory Bowel Disease (IBD) Team Clinic at Children’s Mercy Kansas City, established in January 2011, is one clear example of an integrated medical-psychosocial care model. The IBD Team Clinic provides interdisciplinary and family-centered care to approximately 500 young patients with IBD with the goal of shifting from a reactive health care model to a proactive health promotion model of biopsychosocial care that recognizes the physical, nutritional, emotional, behavioral, financial, and social needs of patients and families. In other words, rather than waiting to address problems when they arise, the program is specifically structured to anticipate, screen for, and address common issues in this population before they become problems for a specific child or family. The IBD Team Clinic is staffed by two pediatric gastroenterologists, two nurse practitioners, one pediatric psychologist, one social worker, two dieticians, and two nurse coordinators, all of whom are dedicated programmatically to the care of IBD patients. During an IBD Team Clinic visit, each team member visits with a patient. The team then gathers to discuss the patient’s overall health and functioning, and develop a holistic treatment plan that encompasses each discipline. To inform the psychosocial aspect of a patient’s treatment plan, patients and parents complete psychosocial questionnaires on the patient’s emotional/behavioral functioning, quality of life, and adherence. Based on psychosocial questionnaires and a discussion with the patient and family, treatment recommendations for psychological services (e.g., outpatient therapy, psychological evaluation) are made. Targeted intervention is also delivered by the psychologist with focus on promoting optimal disease management and self-care, adjustment to chronic illness demands, and attendance at school and other normally scheduled activities. This routine screening allows the team to monitor a patient’s psychosocial functioning over time, target functional changes before they cause clinically significant impairment, and integrate the patient’s psychosocial health into a comprehensive treatment plan. Patients are typically seen by the team within 1–4 weeks of their initial IBD diagnosis with once yearly follow-up thereafter for continuity of care.

Functional Abdominal Pain

Another of Children’s Mercy Hospital’s highly integrated medical-psychological clinical programs in GI is dedicated to the treatment of pediatric chronic abdominal pain in children ages 8 to 17. Initially launched in 2002, the Abdominal Pain Clinic has undergone significant expansion over the last decade and is currently comprised of two GI physicians, two pediatric psychologists, one psychology fellow, three advanced practice providers, three biofeedback clinicians, five nursing staff, and one clinical social worker. The program offers assessment and treatment of pediatric patients’ abdominal pain and other GI symptoms from the point of initial evaluation through follow up. At the initial evaluation visit, patients and families are seen jointly by a GI physician and a pediatric psychologist. Likewise, at the first follow up visit, patients are seen by an advanced practice provider (an APRN or physician assistant) and a pediatric psychologist. The need for patients to be seen by the psychologist at subsequent follow up visits is determined by the patients’ follow up team. Standard of care in the APC includes a complete medical history, physical exam, and any necessary testing (i.e., procedures, laboratory work), as well as assessment of patients’ coping repertoires, sleep habits, emotional and behavioral functioning, quality of life, and other family factors, using a standardized questionnaire battery. Based on findings from these assessments and discussion with the patient and family, a comprehensive and specifically tailored treatment plan is devised for each patient. Treatment plans typically include medications targeting presumed biological contributors to a patient’s abdominal pain (e.g., allergic inflammation, visceral hyperalgesia, impaired motility), as well as the recommendation for biofeedback-assisted relaxation training, outpatient mental health treatment, and/or school intervention (in the form of a Section 504 accommodation plan). Psychoeducation and informal recommendations related to maintaining/returning to normal daily activities, coping with individual pain episodes, and parental coaching to support a patient’s recovery efforts also are provided as part of the treatment plan. A similar, but pared down, version of the above battery is administered at all follow up visits in order to monitor patients’ progress over time as well as allow for proactive and flexible intervention with necessary treatment targets (e.g., school attendance) before they cause clinically significant impairment and more sustained disability.

The Abdominal Pain Program was the first integrated clinical care program in GI at Children’s Mercy Hospital in Kansas City. The current team includes pediatric gastroenterologists, psychologists, APRNs, certified biofeedback clinicians, as well as other allied health professionals.

Photo Source: Used with Permission Children’s Mercy Hospital, Kansas City.

Functional Constipation and Encopresis

The Interdisciplinary Constipation and Incontinence (ICI) Clinic at Children’s Mercy Kansas City is another highly integrated clinic that utilizes a biopsychosocial model in the assessment and treatment of children and adolescents with functional constipation and incontinence, or encopresis. The ICI Clinic was established in 2010 and provides interdisciplinary treatment from a pediatric psychologist and an advanced practice nurse (APRN). Patients are referred to the ICI Clinic from Children’s Mercy GI physicians and nurse practitioners, as well as from community general pediatricians. Referrals also come from GI physicians who specialize in motility disorders, for patients who have been diagnosed with learned pelvic floor coordination issues or dysynergy. At the initial appointment, all patients are seen jointly by the medical and psychology providers who complete a combined history, assessment of contributing factors, and treatment conceptualization. Assessment, conducted via a standard questionnaire battery and semi-structured clinical interview, includes a thorough review of bowel and toileting history (including current symptoms of constipation or impaction), a physical exam, necessary laboratory assessment, and review of both the patient’s behavioral and emotional functioning and relevant family factors. Standard of care in the ICI Clinic includes provision of detailed education about the nature of constipation and resultant soiling or encopresis, acute treatment of impaction (i.e., “clean-out”), maintenance medication(s), dietary modifications, and behavioral treatments to improve toileting habits. These behavioral treatments commonly include interventions for toileting refusal, parent training to manage child noncompliance, use of positive reinforcement and incentive systems to reach systematic goals with toileting, and techniques for improving “defecation dynamics” and appropriate control of the pelvic floor during elimination. It is also common for ICI Clinic staff to provide support and recommendations for accommodations and treatments at school. Follow up is initially held monthly due to the importance of close tracking of symptoms and adjustment to medical and behavioral interventions. Follow up appointments in the ICI Clinic continue to be interdisciplinary, but children and adolescents who need more intensive behavioral or psychological support may be seen separately by the psychologist between follow up visits. Between visits, children and families often complete bowel symptom rating sheets that track bowel movements in the toilet, soiling, consistency of stools, frequency of stools, and timing of stools. Rating sheets provide a specific way to monitor soiling accidents and other important treatment outcomes and to adjust the treatment plan over time, as needed. To improve treatment adherence and facilitate more timely adjustments to the treatment plan, many families will send their bowel symptom rating sheets to the providers via email.

Intestinal Failure/Short Gut Syndrome

The Intestinal Rehabilitation Program is the newest integrated clinical care program at Children’s Mercy Hospital in Kansas City. The team includes a pediatric gastroenterologist, surgeon, psychologist, APRN, dietician, pharmacist, and social worker, as well as other allied health professionals. Patients from infancy through adolescence who meet criteria for intestinal failure/short gut syndrome receive team-based comprehensive care, across both inpatient and outpatient settings. To promote positive medical outcomes, family coping/adjustment, and continuity of care, many patients are first seen in the NICU, where the Intestinal Rehabilitation Team works closely with the neonatology team to tailor treatment recommendations for each child. Goals include progress toward enteral feeding and successful transition from the NICU to a medical inpatient unit. Patients who continue to need GI care post-discharge are followed in the outpatient Intestinal Rehabilitation Clinic. Common presenting concerns addressed by the psychologist, in collaboration with the larger team, include parent stress/coping, behavioral feeding and sleep recommendations, adherence concerns, and disruptive/noncompliant child behavior. This integrated approach allows for regular and close tracking of the developmental progress of this very vulnerable patient group, provision of anticipatory guidance at key developmental timepoints, and the formulation of tailored biopsychosocial recommendations designed to promote long-term positive outcomes.

Summary and Conclusions

Although the integrated programs outlined above vary to some degree in detail (e.g., the frequency and timing of follow up, whether all visits are team-based or simply informed by the joint treatment plan), common themes serve as a foundation for this type of work. Specifically, all of the highlighted programs are comprised of professionals in complementary specialty areas that allow for consideration of biopsychosocial factors, both independently and in interaction with one another throughout the assessment and treatment process. All of the programs prioritize proactive versus reactive care, using routine screening to identify opportunities for health promotion and early intervention that can minimize long-term sequelae. The programs also focus on family-centered care, viewing the patient’s own biopsychosocial contributors within a broader context to promote short- and long-term health. Finally, all of the programs utilize repeated measurement of patient-centered outcomes to monitor individual functioning, as well as to identify opportunities for programmatic quality improvement.

Replicating a truly integrated model of care, such as those described above, may be challenging for an individual provider, particularly in a private practice setting. Certainly, barriers exist to collaborative care, with one recent study identifying time limitations, access to other professionals, billing challenges, and family resistance among those faced most routinely in practice.⁹ Moving toward greater integration, however, may be a realistic, attainable, and perhaps necessary goal. Simply understanding the management strategies consistent with an integrated care approach, such as routinely sharing and receiving notes, discussing conceptualization and progress over the phone, and/or engaging in joint treatment planning, can provide a roadmap for increasing an independent provider’s level of care integration.⁸ Finding the right collaborative partner(s) who are a good “fit” (e.g., same insurance panel), establishing reasonable expectations for communication regarding individual patient care, and beginning collaborative partnerships on a limited basis to refine the integrated model before expanding service are essential. In addition, recruiting a “champion” from your organization’s administration who shares your vision can be vitally important.

Primary care providers interested in interdisciplinary collaborations (and their desired collaborators) should have sufficient experience or training to be expert in the clinical area needed, good social skills, willingness to engage in shared learning, and respect for scope of practice (both their own and others’) as a foundation for developing an effective collaborative partnership. Over time, individual partnerships, under the right conditions, may evolve into more integrated team-based practice. In underserved geographic areas or populations, in particular, efforts to increase care integration among independent providers will be especially valuable. Fortunately, these efforts can be supported through the latest developments in communication technology (e.g., telemedicine, electronic record sharing, and video conferencing). Further, the Affordable Care Act¹⁰ contains funding to promote integrated care and, in concert with this, newer pay-for-performance models of reimbursement emphasize cost effectiveness of the overall treatment package in attaining positive patient outcomes. These shifts in the broader healthcare system may result in integrated care models being considered more financially viable for many disease processes and chronic health conditions, provided that positive patient outcomes can be demonstrated through ongoing quality monitoring.

Health care models and delivery systems that simultaneously address patients’ medical and psychosocial needs are certainly consistent with the conceptualizations of many chronic diseases, and are increasingly gaining empirical support in terms of their ability to produce healthcare cost savings, heightened consumer satisfaction, and improved patient outcomes. While the integration of medical and psychosocial care is not without its practical challenges, the models outlined above demonstrate that integrated care is possible within the right environment and with the right players on the team.

Biography

Clockwise from left: Amanda D. Deacy, PhD, BCB-A, Michele H. Maddux, PhD, Matt Wassom, PhD, Rebecca J. Johnson, PhD, ABPP, and Jennifer Verrill Schurman, PhD, ABPP, BCB, are all psychologists in the Division of Developmental & Behavioral Sciences and the Division of Gastroenterology at Children’s Mercy Hospital in Kansas City, Missouri.

Contact: addeacy@cmh.edu