2013 APA Bronze Award: Family-Based, Integrated Care for Children and Adolescents With Complex Pediatric Illness
Treatments sometimes fail. And when they fail the family of a child who has a chronic medical illness and a comorbid psychiatric disorder—a child who has been ill for many years and who may be at the center of a family story of failure and pain—the family may reach an impasse, believing that the child’s illness has taken control. Since 1998, Hasbro Children’s Partial Hospital Program (HCPHP) has been helping these families by meeting the child and family where they are and listening to their impasse story. Often the story involves painful family relationships, trauma, unresolved grief, or other factors that have left the family stuck in a nonproductive mode with respect to the child’s illness. HCPHP therapists and staff then systematically help the family to heal by adding new ideas to their belief system about the child’s illness and about themselves.
HCPHP is a collaborative program of the Department of Pediatrics and the Division of Child Psychiatry at Hasbro Children's Hospital, the pediatric division of Rhode Island Hospital, which is the largest hospital in the state. HCPHP is an integrated “ped-psych” treatment program that serves children and adolescents who have comorbid general medical and psychiatric disorders. Commonly diagnosed illnesses among children in the program include diabetes, eating disorders, and encopresis. Patients aged six to 18 whom conventional approaches have failed receive individualized, intensive, integrated care in a day hospital setting. Since 1998, the program has treated more than 2,200 patients. Hasbro Children’s Hospital is affiliated with the Warren Alpert Medical School of Brown University. Trainees in psychiatry, psychology, and pediatrics have rotated through the program to experience its unique treatment approach.
Each child admitted to HCPHP receives disease-specific pediatric treatment and psychiatric care appropriate to the needs of the child and his or her family. HCPHP uses a treatment approach that is based in family systems therapy and cognitive-behavioral therapy. The program strives to makes parents an integral part of the treatment team and to empower them to take control of the illness. Individual, group, and family psychotherapy work together to encourage adherence to prescribed medical regimens, open expression of emotional pain that otherwise might be displaced into somatic symptoms, age-appropriate limit setting in regard to problematic behaviors, and resolution of long-standing family conflicts. The Agency for Healthcare Research and Quality program has cited HCPHP for its innovative treatment approach (www.innovations.ahrq.gov/content.aspx?id=1775).
In recognition of its dedication to children and families and its integrated approach to care, HCPHP was selected to receive APA’s 2013 Bronze Achievement Award. The award will be presented on October 10, 2013, at the opening session of the Institute on Psychiatric Services in Philadelphia.
HCPHP operates five days a week from 7:30 a.m. to 3:30 p.m. and has the capacity to serve 16 patients at a time. Children receive treatment during the day and return home on evenings and weekends. The average stay is 18 days. The program is located in Hasbro Children’s Hospital, which provides access to all of the hospital’s resources, including treatment, diagnostic testing, and imaging. HCPHP staff include child psychiatrists (1.8 full-time equivalents [FTE]), pediatricians (1.7 FTE), psychologists (2.2 FTE), social workers (1.5 FTE), nutritionists (1.8 FTE), school teachers (1.1 FTE), nurses (3.8 FTE), milieu therapists (2.6 FTE), and a physical therapist (.5 FTE). The program is codirected by a senior child and adolescent psychiatrist and a senior pediatrician. Together they lead the daily multidisciplinary team rounds, modeling and ensuring truly integrated care.
HCPHP multidisciplinary staff work to stabilize both general medical and psychiatric symptoms. Many children are identified as needing psychiatric medication as a component of their care. However, many are identified as not needing psychiatric medications that they may be taking. Similarly, some children enter the program receiving treatment for their general medical illness (medication and invasive work-up or treatment) that is not necessary and potentially harmful. Thus, in addition to addressing adherence and acceptance of essential treatment, staff provide support to patients and families in regard to letting go of unnecessary—as well as costly and potentially harmful—medical and psychiatric treatment.
Because HCPHP uses a day treatment format, its cost is significantly less than comparable inpatient medical and psychiatric treatment settings. The program’s direct expenses are approximately $2 million per year and are offset entirely by private insurance and Rhode Island managed Medicaid.
Research is an important component of the program. A recent pilot study tested a 13-item questionnaire developed by HCPHP’s clinician that addresses family beliefs that are thought to influence illness management—beliefs that can be modified in family systems treatment. Results showed that parents’ illness beliefs, such as understanding the illness, control over the illness, and the illness’s control over family life, and satisfaction changed from HCPHP admission to discharge. The changes reflected more adaptive beliefs and were maintained at nine-month follow-up. HCPHP currently has funding from the National Institutes of Health to continue development of the questionnaire as a tool to facilitate family-centered assessment and treatment of chronic pediatric illness.
As word of the program has spread regionally and nationally, the waiting list has grown. Recognizing that a three- or four-month wait is unacceptable for patients and families in need of treatment, the hospital recently decided to renovate space to expand HCPHP’s capacity. Also, because partial hospitalization was not feasible for many patients on the wait list because of illness characteristics or family situation, an eight-bed “pod” in the Hasbro Children’s Hospital was converted (at a cost of $1 million) to provide a pediatric psychiatry inpatient unit that is operated as an extension of HCPHP. It opened in early 2013 and has been an important extension of the program, providing integrated care during the most acute phases of treatment.
HCPHP has hosted U.S. and international visitors interested in replicating aspects of its treatment approach in other pediatric hospital settings. Staff have made presentations about HCPHP at national meetings and at children’s hospitals around the country. The program is a national model for the treatment of psychologically complicated medical illness, psychophysiological disorders, somatoform disorders, intractable pain syndromes, and an assortment of comorbid conditions that elude traditional mental health approaches. The program is especially relevant at this critical juncture in the evolution of medical care toward integrated medical and psychiatric care.
For more information, contact Diane DerMarderosian, M.D., Pediatric Co-Director, or Michelle Rickerby, M.D., Psychiatric Co-Director, HCPHP, Rhode Island Hospital, 593 Eddy St., Providence, RI 02903 (e-mail: ddermarderosian@lifespan.
