Patient and Family Experience in a Multidisciplinary Clinic for Children With Single-Ventricle Heart Disease

Abstract

Children with single-ventricle heart disease (SVHD) are at risk for morbidity across multiple organ systems. A single-ventricle multidisciplinary clinic (SVMDC) may address complex health-care needs by providing access to, and coordination among, pediatric subspecialties. However, the patient and family experience of multidisciplinary care for SVHD remains unexplored. We e-mailed a 26-question survey to families after an SVMDC visit, which included evaluation with subspecialists from cardiology, pulmonology, gastroenterology, neuropsychology, and pediatric psychology, as well as social activities during clinic. Responses were anonymized to protect privacy, and data were analyzed quantitatively and qualitatively. Over 3 years, 22% (27/122) of families completed the survey. Overall, families’ experiences were positive, with 100% reporting that they would recommend the SVMDC to others. Qualitative themes emerged regarding logistics, multidisciplinary care, key takeaways from clinic, and connection-making with other families. A multidisciplinary clinic demonstrated overall acceptability and perceived benefit to families of children with SVHD. Considerations for mixed experiences regarding financial commitment and connection-making among parents are discussed, as are the benefits of the synergy achieved through multidisciplinary care.

Evaluation of multidisciplinary high-risk pregnancy clinic for myelomeningocele

“…The current literature increasingly documents the use, implementation, and effectiveness of multidisciplinary clinics akin to the HRPC. [7][8][9][10][11][12][13][14][15] Like the HRPC, these clinics serve as platforms for patient and family education, care planning, and discussions regarding crucial surgical and medical choices. [7][8][9][10][11][12][13][14] These clinics extend beyond the realm of SB, catering to individuals with conditions such as pancreatic cancer, breast cancer, pediatric single-ventricle heart disease, complex dyslipidemia, epilepsy, and diseases necessitating long-term tracheostomy.…”

“…[8] The perceived unity among the medical team increases patients' trust in the medical process, contributing to a positive patient experience. [10,14] Patient attendance at these roundtable discussions results in more effective communication and coordination [11,13,14], along with improved continuity and coherence of care. [15] Consolidating multiple providers into one session also reduces the burden of managing numerous appointments across various clinics, enhancing convenience for families.…”

“…It's important to acknowledge that studies have demonstrated the importance of clinic convenience to patients and their families. [9,10,14] The advent of telemedicine has signi cantly expanded access to this type of care, which was previously restricted to academic institutions. Telemedicine is perceived as offering quality care equivalent to in-person visits.…”

“…These discussions facilitated the creation of personalized care plans and recommendations, emphasizing patient-centered care, something desired and appreciated by patients. [11][12][13][14] Research indicates that enhanced coordination among the medical team not only boosts patient satisfaction [7][8][9][10][11][12][13][14][15] but also yields better clinical outcomes. [7,8,12] Furthermore, these discussions have been shown to expedite the time to de nitive diagnosis and subsequent interventions, both educational and medical.…”

Qualitative feedback from caregivers in a multidisciplinary pediatric neuromuscular clinic

“…MDCs facilitate improved communication among different specialties, leading to a more collaborative approach to patient care and coordinated treatment plans [10]. Research increasingly supports the benefits of MDCs for sub-populations of CMC, such as patients with swallowing disorders [10], aerodigestive disorders [11,12], hemophilia [13], diabetes [14], and cardiovascular disorders [15]. However, there is limited literature assessing the impact of the MDC model for children with neuromuscular disorders.…”