Bridging the gap

October 1, 2016

Brainstorming with others on our medical team, we sought to bridge the gap between hospital and MH for our pediatric patients.

Jamila, an 8-year old asthma patient, barely made it to the emergency department (ED) this time.  This was the closest she had been to irreversible respiratory failure.  In spite of multiple ED visits and hospitalizations, Jamila’s family still struggled to keep appointments with her primary care provider (PCP) in her medical home (MH) and to administer her prescribed controller medications.  A PCP myself on inpatient service, I reflected on the staggering number of patients I saw who had no physician or whose only relationship to their physician was a name on an insurance card.  Brainstorming with others on our medical team, we sought to bridge the gap between hospital and MH for our pediatric patients.

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Through observation and literature review, we noticed that keeping the first follow-up appointment after hospital discharge was critical to connecting hospitalized patients to a PCP and, ideally, to a MH.  The MH is defined as a model of care that is accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally effective.1 Misky et al demonstrated that “patients lacking timely PCP follow-up were 10 times more likely to be readmitted.”2  Shakib et al reported that “newborns who have a first well child visit within the recommended time period after hospital discharge are substantially less likely to be readmitted.”3

Making the connection

Our team of pediatric healthcare professionals developed a hospital-based service at an inner-city hospital in Toledo, Ohio, to connect hospitalized children to MHs. The new service aims to: help families of hospitalized children know what a MH is; understand the benefits and their responsibilities as informed, shared decision-makers; identify a MH before discharge; make and keep a first appointment after discharge; and, a year later, report having kept appointments with that provider, sub-specialists, and community resources.  The service was funded through grants from Healthy Tomorrows Partnership for Children – American Academy of Pediatrics & Health Resources and Services Administration of the Department of Health and Human Services, and the United Way of Greater Toledo.   

The service provides a hospital-based medical home liaison (MHL), a nurse with pediatric experience (particularly with children with special healthcare needs), access to a counselor, listening tools for parents, a continuously curated list of practices in northwest Ohio that meet some or all of the MH definition, and a care notebook. The MHL works on a consultation team along with a primary care pediatrician providing palliative care and a licensed counselor.

Hospitalized children with various levels of severity are identified for the service by the nurses, social workers, or physicians caring for them.  Patients in the neonatal intensive care unit (NICU), pediatric floor, pediatric intensive care unit, well-infant nursery, and subspecialty clinics that do not have a medical provider, or are underutilizing their current medical provider, or who have extenuating psychosocial co-morbidities are referred to the service.   

After a patient is referred, the MHL meets with the patient’s family and builds a relationship using the Listening with Connection model.4  Listening with Connection focuses on respect, appreciation, connection, listening, warmth, and firmness.  The MHL offers a safe environment in which to understand the child’s medical history and current needs with respect to a MH.  In “listening time,” the MHL listens to the family’s upsets and the emotional overload that accompany having a hospitalized child.  During listening time, the MHL does not judge, criticize, tell the family what to do, or how to feel or act - he or she listens.  The concept, and our experience, is that as families offload these emotions, they think more clearly and function more responsibly so they are better able to make decisions and follow through with care for their child and themselves.

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The MHL educates the family about MH’s qualities and benefits. He or she empowers the family to come to appointments informed, respectful, on time, and with relevant information. Every family in the program is offered a care notebook to organize and track their child’s relevant information (eg, test results, appointments, consultations, diet input/output, medications, observed signs and symptoms).  The MHL provides a list of qualified MHs that matches the family’s insurance coverage and geography.  Not all of the PCPs on the list are certified MHs, but they contain most or all of the qualities of a MH. Families are also given a set of questions they can ask prospective MHs in order to find a practice that fits their needs. 

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The MHL helps establish and maintain the family’s connection with a MH before and after discharge.  He or she ensures the family schedules their first outpatient appointment with the MH before hospital discharge. After discharge, the MHL calls the family to confirm that they are ready for their child’s first MH appointment. He or she calls after the appointment to ensure that the family kept the appointment and discuss how it went. If the family didn’t keep the appointment or if it didn’t go well, then the MHL works with them to reschedule or find a new provider.  The MHL maintains contact with the family after discharge to ensure they are well-connected.  If the patient is rehospitalized, the MHL reassesses the patient and family, re-educates, and reinforces the MH concepts. 

The MHL refers families to other resources as needed.  Some families may require a social worker. When families and children need listening time beyond what the MHL can offer to offload emotional upsets, the MHL refers them to a part-time, on-site licensed counselor hired specifically for the program and, if appropriate, to the hospital’s bereavement service. 

Keeping their appointments

Between February 2009 and January 13, 2014, the program served 809 hospitalized children: 57% Caucasian, 25% African American, 74% Medicaid, 49% aged less than 1 week. Thirty-nine percent had had no MH. Follow-up data was available for 617 patients; 97% kept their initial appointment with their MH.  One year follow-up data was available for 406 patients; 95% were able to identify their MH and 87% had kept “all or almost all” of their appointments with their MH, subspecialists, and community resources. 

It’s important to consider some limitations to the evaluation data.  The program was designed as a consultation service, not research; therefore, the level of evidence is limited. Our positive results may not generalize to other institutions or with other MHLs.  Data are self-reported. Follow-up data were missing due to patient death, transfer to another MH or institution, lost contact, still in the hospital, or too recently discharged.  The 1-year show-rate could be inflated due to missing data. Finally, a baseline rate of first appointments kept is not available. 

One success story

The MHL met in the NICU with Heather at the bedside of her newborn baby, Cindy.  The MHL introduced herself and explained her role as a non-judgmental listener who was able to help Heather connect with a MH that could best serve her and her baby.  Open and willing to answer questions, Heather described her long-term medical and emotional issues that led to prescriptions for Norco (acetaminophen and hydrocodone), Vicodin (acetaminophen and hydrocodone), Percocet (oxycodone and Acetaminophen), and Xanax (alprazolam) throughout her pregnancy.  Heather’s newborn, Cindy, required methadone to treat the withdrawal.  Heather cried during many visits with the MHL knowing that withdrawal from opiates would be miserable and she dreaded watching her little baby girl suffer through it. She felt guilt and shame. The MHL listened without judgment and assured Heather that she would continue listening and supporting her through the hospitalization and after she was home.   

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Heather had no doctor for Cindy, so the MHL shared the list of potential providers in her geographic area that could manage the outpatient methadone wean.  The MHL gave Heather a list of appropriate questions to ask when choosing a MH.  She also educated her on responsibilities, such as coming to appointments informed, complying with treatment plans and keeping appointments.  She gave her a medical care notebook and empowered Heather to make an appointment with the MH she had selected before discharge.

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Heather kept her first appointment with Cindy’s MH.  Later, the MHL contacted that MH to follow-up on the baby’s progress. Cindy was weaned off the methadone 4 weeks after discharge.  Heather kept Cindy’s appointments with the pulmonologist, ophthalmologist and with the NICU follow-up clinic. In addition, Heather kept Cindy’s medical care notebook updated and took it to all appointments.

Implications for practice

Our data suggest dramatic success is possible with our hospital-to-MH service model involving a listening, strength-based approach of educating and coaching parents how to identify and utilize a MH for their hospitalized child.  In our experience, the face-to-face interaction between the MHL and family is critical to the success of this service.  If a hospital is unable to assign an individual specifically as the MHL, then the practice’s rounding pediatrician, nurse practitioner, or one of the hospital-based team can listen, appreciate, inform, and coach families in the hospital.  Before discharge, it is vital that someone on the healthcare team ensures that the family has made a follow-up appointment with a MH or PCP, and that the family is empowered to know and carry out their responsibilities.

References

1. American Academy of Pediatrics, Medical Home Initiatives for Children with Special Needs Project Advisory Committee. The medical home.  Pediatrics. 2002; 110:184-186.

2. Misky GJ, Wald HL, Coleman EA.  Post-hospitalization transitions: examining the effects of timing of primary care provider follow-up.  Journal of Hospital Medicine. 2010; 5(7):392-397.

3. Shakib J, Buchi K, Smith E, Korgenski K, Young PC.  Timing of initial well-child visit and readmissions of newborns.  Pediatrics. 2015; 135(3):469-474.

4. Wipfler, P. Listening to Parents: Listening Partnerships for Parents.  http://www.handinhandparenting.org/wp-content/uploads/2013/10/Listening_Partnerships_for_Parents1.pdf.  Published 2006.  Accessed September 17, 2015.

Dr. Oatis is a pediatrician and the medical director of Mercy Children's Hospital Family Care Team at Mercy St. Vincent Medical Center in Toledo, Ohio. Ms. Buderer is an independent biostatistician, research consultant, and program evaluator in Oak Harbor, Ohio. Ms. Canterbury is a licensed counselor for CPPL Counseling in Toledo, Ohio.