Development and implementation of a pre-tracheostomy multidisciplinary conference: An initiative to improve patient selection.

OBJECTIVE: To describe our institutional experience in implementing a pre-tracheostomy multidisciplinary conference and assess its effects on patient selection and communication between team members and with families. METHODS: Descriptive study and retrospective review of patient outcomes in a period prior to (4/2016-1/2018) and following (2/2018-11/2019) implementation of the conference and conference participant survey. RESULTS: In the 21 months prior to the conference, 53 patients out of 67 consults (79%) went on to have a tracheostomy. After implementation, 96 patients, 42 females and 54 males, between 2 weeks and 22 years of age were discussed. 58 (60%) of patients referred for tracheostomy ultimately underwent surgery. Of those managed without tracheostomy, 16% were extubated, 11% were managed with noninvasive respiratory support, and 13% of families chose to redirect care. There was no difference in time between consultation and surgery (p = 0.9), or post-surgical length of stay after the conference was implemented (p = 0.9). Survey responses were gathered from 34 conference participants. Respondents agreed that the conference was useful in facilitating communication among the care team (91%), promoting understanding of the patient's treatment options (85%), promoting understanding about long-term outcomes and progression of underlying disease process (79%), clarifying risks, benefits, and alternatives of treatment options (82%), and informing discussions with the family (70%). DISCUSSION: Potential benefits of a multidisciplinary pre-tracheostomy conference include improved provider communication and shared decision making between the medical team and family. We found a reduction in the proportion of patients who ultimately underwent tracheostomy as a result of a formal multidisciplinary discussion, but did not find either any delays in care, or reduction in post-operative length of stay. IMPLICATIONS FOR PRACTICE: A multidisciplinary team approach to patient selection can foster communication between team members, identify barriers to discharge and quality care at home, and provide caregivers with information necessary to make an informed decision about their child's care.

Identifying Opportunities to Provide Family-centered Care for Families With Children With Type 1 Spinal Muscular Atrophy.

STUDY PURPOSE: The purpose of this qualitative study was to understand, from the parent perspective, the experience of the family whose child has Type 1 spinal muscular atrophy (Type 1 SMA), in the emergency center, hospital, and clinical care settings to identify opportunities for improved family-centered care (FCC). DESIGN AND METHODS: This study used a qualitative descriptive design with individual or small group interviews guided by a semi-structured questionnaire. Reviewers used framework analysis to identify gaps in the provision of FCC and opportunities for improvement with respect to services health professionals may provide families of children with Type 1 SMA. RESULTS: Nineteen families with 22 children with Type 1 SMA participated. Results are organized according to eight basic tenets of FCC. Family-to-family interactions strongly impacted participants' decision-making and perceived level of support. Participants valued strong family/provider partnerships, feeling heard and respected by their providers, and receiving complete education regarding disease trajectory. CONCLUSIONS: Our analyses revealed both successful application of FCC and gaps in care where FCC could have been used to benefit families who have children with Type 1 SMA. As a pediatric chronic illness affects the whole family, FCC is important in maintaining the providers' focus on the family during the child's care. PRACTICE IMPLICATIONS: There are opportunities for nursing, social work, care managers and others to engage as care coordinators to explain the family's goals and values to the medical team. Care coordinators help ensure understanding between families and providers, empowering the family to articulate their hopes and concerns.

The Experience of Families With Children With Spinal Muscular Atrophy Type I Across Health Care Systems.

Spinal muscular atrophy type I is a genetic disease characterized by degeneration of spinal cord motor neurons resulting in weakness, technology dependence and early demise. While the newly approved treatment nusinersen may alter the morbidity/mortality of this disease there continues to be complex treatment challenges to consider. The aim of this qualitative study was to understand from the parent's perspective, experiences of the family and child in the emergency center, hospital, and clinical care settings to identify gaps in care. Nineteen families interviewed had 22 children with spinal muscular atrophy I (11 deceased, 11 living). Three overarching themes emerged from parent interviews describing a range of experiences surrounding diagnosis, informed medical decision making and acute care practice. Identified quality improvements include development of a diagnostic screening tool, a medical decision tool, and emergency center informational template individualized to the child and providing an overview of spinal muscular atrophy I.