Family-Centered Pediatric Plastic Surgery Care

Abstract

Our multidisciplinary cleft palate and craniofacial center was established in 1978 and manages more than 5,000 active patients from birth to skeletal maturity. Over the past four years we have implemented a complex family-centered reorganization, with the goal of improving care and patient retention. Through our implementation of a familycentered approach, we have also decreased treatment burden, need for secondary procedures and cost of care. ^1–12

A family-centered pediatric plastic surgery care model can be used to increase satisfaction, improve health outcomes and follow-up, decrease burden of care, and improve efficiency of resource utilization.

Introduction

A multidisciplinary, team-based approach has long been standard of care for patients with craniofacial anomalies and has provided the basis for a multidisciplinary care model in many other fields of medicine⁴ (Figure 1). This care model allows patients to see multiple practitioners in a single visit, rather than attending separately scheduled appointments with each necessary provider, and it facilitates collaborative care planning amongst providers. Our families attend a multidisciplinary team clinic annually to consult with various providers as appropriate to patient age and diagnosis, including their plastic surgeon, orthodontist, speech-language pathologist, otolaryngologist, amongst others (Figure 2). American Cleft Palate-Craniofacial Association Standards (the Standards) provide a nationally accepted, disease-centered framework for delivery of multidisciplinary cleft care. However, the Standards afford flexibility for teams to design their clinics to best suit their patients’ and providers’ needs and resources. As a result, teams across the country demonstrate distinct approaches to organization, clinical protocols and other integral care components.^4,6

Figure 1.

Multidisciplinary Cleft-Craniofacial team members at St. Louis Children’s Hospital.

Figure 2.

Cleft Lip & Palate timeline for care.

In structuring their clinics, teams often have little or no understanding of families’ treatment concerns, needs, and preferences, and teams typically base their process of care decisions on provider experience, without regard to the family’s perspective.¹³ In contrast, a family-centered model incorporates patient and parent concerns, needs, and preferences into care decisions, in order to attain outcomes meaningful to families and providers alike.

Family-centered care is a critical healthcare improvement aim of the Institute of Medicine and a high priority focus area for the National Institutes of Health and Agency for Healthcare Research and Quality.⁷ Evidence-based medicine has shown family-centered care to be positively associated with clinical effectiveness, patient safety and care satisfaction.¹⁴ Higher care satisfaction correlates with better follow-up and retention, which in turn leads to improved clinical outcomes.¹⁵ At present, poor follow-up and retention are a substantial hindrance to long-term, complete care for medically complex craniofacial patients, which family-centered model could mitigate.³ Moreover, a shift to a family-centered model will enable cleft teams to adjust the care process to minimize care burden and improve patient quality of life (QOL).¹⁶

Over the past four years, our team has managed our transition to a family-centered model with a focus on obtaining optimal outcomes with minimum burden. Here we summarize our multidisciplinary and systematic approach to improve care of patients within our cleft and craniofacial clinic.

Medically-Complex Craniofacial Patients

Patients with craniofacial anomalies, including craniosynostosis, cleft palate, and craniofacial microsomia, are considered medically complex, and they are followed from birth to skeletal maturity (15–18 years of age). Craniosynostosis is the abnormal early fusion of a cranial suture resulting in irregular head shape. Patients can present with single-suture involvement or more complex multisuture synostosis, and the overall incidence of craniosynostosis is as high as 1 in 1,700 births.¹⁷

Surgical management of patients with craniosynostosis is complex, requiring the expertise of both a plastic surgeon and a neurosurgeon, and necessitating adequate long-term multidisciplinary follow-up. Orofacial clefts (including cleft palate) are the most common congenital facial anomalies in the world, with nearly 250,000 new cases diagnosed annually worldwide, and an estimated prevalence in the United States of 1 in 690 live births.¹⁸ In these children, a variety of health domains related to patient QOL, including speech, hearing, breathing, oral health, feeding, appearance, and psychosocial functioning, are affected. In light of their complex needs, children with orofacial clefts (including cleft lip and palate) undergo a multitude of surgical and nonsurgical treatments during their childhood. Throughout this process, they interact with a number of healthcare providers across multiple disciplines regarding different aspects of their care, including plastic surgery for correction of the lip and palate, speech therapy for treatment of speech deficits, otolaryngology for airway and hearing compromise, audiology for treatment of hearing loss, dentistry for oral healthcare, nutrition for feeding difficulty, and psychology for psychosocial issues related to their diagnosis. Children with craniofacial microsomia are born with a constellation of symptoms that includes orbit involvement, mandibular hypoplasia, microtia (pinna underdevelopment), nerve involvement, and soft tissue hypoplasia.¹⁹ Surgical repair for craniofacial microsomia varies on the severity of the anomaly but can include the need for bone-anchored hearing aids, facial reconstruction (such as surgical distraction osteogenesis), and intensive ophthalmological care. At our center, the timing of surgical procedures for craniosynostosis, cleft palate and craniofacial microsomia is guided by the ultimate goal of decreasing the number of secondary procedures and decreasing overall treatment burden.

Multidisciplinary Team Care

A multidisciplinary, team-based approach has been standard of care for patients with craniofacial anomalies since 1938, and our center was established in 1978 as the first cleft and craniofacial team to serve the Midwest region. Our team members include surgeons from Plastic Surgery and Otolaryngology, as well as a Speech-Language Pathologist (SLP), Dentist, Orthodontist, Psychologist, Audiologist, and Geneticist, enabling practitioners to better meet patients’ complex needs. As an American Cleft Palate-Craniofacial Association (ACPA)-approved team, we closely adhere to ACPA Standards. Specifically, the ACPA established minimum standards of care for cleft palate and craniofacial teams in the 1990s and adopted its Standards for Cleft and Craniofacial Teams in 2008.²⁰ Only teams who adhere to these Standards are eligible to be listed by the ACPA as approved teams.

The Standards establish the minimum requirements for multidisciplinary cleft and craniofacial team care. These criteria also afford teams flexibility to organize to best meet the needs of their individual patient populations, geographic locations, resources and treatment environments. We found a wide variation of clinical protocols and approaches to clinic administration in teams across the United States.⁴ Combined with the complex, multidisciplinary nature of cleft palate and craniofacial care, the diversity of clinical protocols causes substantial variation in care costs and resource utilization.⁴ The estimated total cost for each new case of cleft lip and palate is roughly $175,000, and clinical protocol options influence cost of care, patient and provider resource utilization, medical outcomes, family-reported QOL, and family-reported satisfaction with outcomes and care. Our team has continually strived for the transition of cleft and craniofacial care to a value-driven, family-centered model of care, in an effort to lower care burden and overall costs of care (Figure 3).

Figure 3.

Nonsyndromic craniosynostosis timeline for care from birth to skeletal maturity. New protocol minimizes clinic visits and need for additional imaging.

Family-Centered Care

Over the past few decades, medicine has transitioned to a family-centered model (in the context of adult medicine, patient-centered).^14,21,22 For example, the American Academy of Pediatrics (AAP) has established that family-centered care is a critical component of clinical decision-making and stresses that patients and families should have the opportunity to collaborate with providers in all aspects of care.¹⁴ The implementation of family-centered improvements increases patient and family satisfaction and QOL, and decreases burden of care.²³ Moreover, family-centered care improves clinical effectiveness and patient safety across diseases, study designs, population groups, and outcome measures.^14,24 Family-centered care is also associated with decreased healthcare costs and healthcare utilization and improved patient follow-up. ^14,21,25,26

Despite its well-recognized benefits, a family-centered care model has been slow to reach cleft and craniofacial centers. Cleft and craniofacial care has traditionally been driven by underlying diagnosis rather than family needs, values and preferences, and the traditional approach often burdens families unnecessarily.^13,27,28 In contrast, a family-centered model would be carefully designed to meet families’ specific needs, concerns, and preferences.^13,28 Over the past four years, in our effort to achieve this improved model of care, we developed and implemented our own plan for team reorganization that aligned with our setting and patient population.⁷ We followed a systematic, collaborative approach to accomplish this in an efficient, organized way. As a result of our efforts, we find we are better able to serve our patient population and meet families’ unique needs while substantially lowering burden of care. For example, we found our improvements increased our multidisciplinary team clinic capacity by 38% (improving patient access to clinic), decreased the time families spent in clinic and reduced the overall frequency of clinic visits.

Shared Decision Making

Shared Decision Making (SDM) is an important component of family-centered care and is a process by which families and practitioners communicate to reach medical decisions based on the best available evidence and factors specific to the patient.^29–31 The SDM model is most beneficial when there is clinical equipoise between surgical treatment options, ensuring that families are well informed and involved in the treatment process.²⁹ Our center developed a decision aid for families that present with a child with craniosynostosis.⁶ Two surgical treatment methods for single-suture craniosynostosis are open cranial vault remodeling (open repair) and endoscope-assisted craniectomy with use of postoperative molding helmet (endoscopic repair).³² Both open and endoscopic repair are used in patients under six months of age, but each has specific benefits and challenges. To help families understand the treatment options, we actively use our decision aid, to ensure families understand the diagnosis and select the treatment option that is best for them.

Surgical Innovations to Decrease Treatment Burden

Pediatric plastic surgery care requires providers to consider timing of procedures that will provide the desired outcome. Managing patients with congenital anomalies adds an additional level of complexity, as surgeons must consider the impact of surgical treatment on facial growth. The ultimate goal is to obtain the best outcome for the child, while minimizing the total number of procedures and need for secondary procedures.

For patients with craniosynostosis, we have successfully obtained this goal in partnership with the Department of Neurosurgery at Washington University and St. Louis Children’s Hospital. In 2006, we started the minimally invasive endoscopic program for the management of patients with craniosynostosis. Over the past 14 years, we have become a national leader in publishing outcomes that have guided centers around the country. In both the minimally invasive treatment and traditional open treatment of patients with craniosynostosis, we have decreased the need for secondary procedures, need for additional computed tomography imaging (thereby limiting ionizing radiation exposures), while maintaining safety for all patients treated during this time with no episodes of significant morbidity and mortality. ^8,9,11,12,33 (Figure 4.)

Figure 4.

Left, child with right unilateral coronal craniosynostosis. Left, 1-year after completion of helmet molding therapy and endoscopic-assisted treatment.

Patients with cleft lip and palate require four to five surgical procedures during their lifetime (lip repair, palate repair, alveolar bone graft, septorhinoplasty, and possible orthognathic surgery). The most common need for secondary procedures in patients with cleft lip and palate are need for lip or nasal revision due to continued irregularities or hyperresonance resulting from inadequate palatal closure during speech. To help reduce the need for secondary lip or nasal procedures, our team includes pediatric Dentists to perform alveolar molding of the asymmetric maxilla to create symmetry in the bony segments of the maxilla. This allows the surgical team to obtain better symmetry in the soft tissue components of the upper lip and nose.³⁴ (Figure 5.) This strategy has significantly decreased the need for secondary palatal procedures following primary palate repair. Our group has also shown that our more aggressive dissection and retropositioning of the muscles within the soft palate results in improved speech outcomes relative to the traditional surgically conservative approach utilized by many teams.¹⁰

Figure 5.

Left, child with a bilateral cleft lip and palate. Right, 5-years after bilateral cleft lip and nose repair.

Conclusion

Our team has moved toward a family-centered model by modifying care protocols and treatment techniques to decrease cost and treatment burden while customizing care to meet our families’ unique and varying needs. Family-centered care is a high-priority focus area in healthcare and its implementation leads to better outcomes, satisfaction and quality of life for families. Family-centered care also decreases care burden and improves healthcare efficiency, including with regards to resource utilization. Our center’s move toward a family centered model has enabled us to best serve families in light of their needs, preferences and values, while simultaneously strengthening our clinical efficiencies and lowering families’ burden of care.