Patient and caregiver experiences at a Multidisciplinary Tracheostomy Clinic.

INTRODUCTION: Children with tracheostomy are a heterogeneous population requiring care from multiple specialties. Multidisciplinary approaches to treating such patients helps to improve the quality of care they receive. Our institution established a Multidisciplinary Tracheostomy Clinics (MDTC) to address outpatient care coordination for tracheostomy patients by providing care from multiple disciplines at a single visit. We report patient/caregivers' experiences of our MDTC. METHODS: Patients with tracheostomy or their caregivers were prospectively recruited between Dec 2017-Oct 2019 to complete surveys assessing their experience at the MDTC. Demographic and satisfaction questionnaires were sent electronically by a REDCap survey distribution tool. Demographic data were collected, such as patient's residence and education level. Medical care variables assessed included history of MDTC attendance, commute time, medical specialties seen, tracheostomy "Go-Bag" use, home-care nursing, and MDTC satisfaction ratings. RESULTS: Twenty-nine patients/caregivers completed the satisfaction survey and 22 completed both the satisfaction survey and demographics questionnaire. Patient ages ranged from 11 months to 36 years. Twenty-three (79%) participants commuted for up to 2 h to the MDTC, and 6 (21%) commuted for more than 2 h. The median number of medical specialties seen at the MDTC was 3. All participants were satisfied that they saw all requested specialties. Tracheostomy supplies were checked for 25 of 28 patients. Twenty-three of 28 subjects rated staff teamwork as "excellent." Twenty-four of 28 patients were "highly likely" to recommend the MDTC. Twenty-three of 28 participants were "highly likely" to return, and 4 were "somewhat likely" to return. CONCLUSION: This study demonstrates that patients with tracheostomy and caregivers were satisfied with the improved coordination and facilitation of care through a Multidisciplinary Tracheostomy Clinic.

Development and validation of a quality of life instrument for patients with laryngeal cleft.

OBJECTIVE: To develop and validate a novel pediatric health-related quality of life (HR-QoL) instrument for patients with laryngeal cleft and their families. METHODS: We surveyed primary caregivers of patients that underwent endoscopic repair of Type I or II laryngeal cleft. The proposed HR-QoL instrument consists of 40 items representing four domains, assessing the patient's physical symptoms, the patient's and family's social functioning, and the family's emotions regarding the patient's illness pre- and post-operatively. Confirmatory factor analysis was employed to assess construct validity, dimensionality, and optimal simple structure. RESULTS: Of 78 eligible participants reached by phone, 40 (51%) of them completed the questionnaire. Confirmatory factor analysis suggested that all four measured constructs were well supported by the measured items in comparison to a unidimensional model. All factor loadings and factor correlations were significant and factor correlations ranged between 0.723 and 0.879. Indices of test-retest reliability and internal consistency reliability were well above recommended standards. There was a significant correlation between current instrument and PedsQL™ score. The overall QoL score significantly improved from 112.3 (±28.1) before surgery to 158.0 (±28.5) after surgery (mean difference 45.7; 95% CI: 37.3, 54.1; p < 0.001). CONCLUSION: Our proposed pediatric HR-QoL instrument is a valid tool for measuring quality of life in patients with laryngeal cleft and their families. This instrument can provide insight into the effects of medical and surgical therapy and guide pre- and post-operative management of laryngeal cleft.