ABSTRACT
BACKGROUND: Children with medical complexity (CMC) have high care needs, often unmet by traditional healthcare models. In response to this need, the Complex Care Service (CCS) at The Royal Children's Hospital (RCH), Melbourne was created. Although preliminary parent satisfaction data were available, we lacked knowledge of how the various components of the expanded service were valued and contributed to overall caregiver satisfaction. AIM: The aims of this study were to (a) determine what caregivers value most about the CCS and (b) explore caregiver perceptions of care. METHODS: All caregivers of children enrolled in the RCH CCS in April 2017 were invited to participate. A purposefully designed survey explored caregiver perceptions of care, including patient quality of care; the extent to which the CCS components added value and satisfaction; and frequency of contact. Participants were also invited to answer open-ended questions and provide general comments. RESULTS: Responses were received from 53 families (51%). We found that 24-hr phone advice, coordination of appointments, a key contact, and access to timely information were the most important components of the service. More than 90% of caregivers indicated that they were satisfied with care and that the CCS improved their child's quality of care. Coordination, communication, family-centred care, quality care, and access were emergent themes within comments. CONCLUSION: This study provides important information regarding the design and operation of services for CMC throughout Australia and further afield. Our findings highlight the importance of the key contact and family-centred care. This has implications for practice, as maintaining service quality, as the CCS expands and is implemented more widely, is a major sustainability challenge. It is crucial that we have a detailed understanding of what elements are required to support effective care coordination, to achieve successful implementation on a larger scale.
Subject(s)
Child Health Services/organization & administration , Chronic Disease/therapy , Disabled Children/rehabilitation , Health Services Needs and Demand/organization & administration , Quality of Health Care/organization & administration , Adolescent , Adult , Australia , Caregivers/psychology , Child , Child, Preschool , Female , Humans , Infant , Male , Qualitative Research , Surveys and QuestionnairesABSTRACT
AIM: To quantify (i) indicated versus non-indicated prescribing of acid-suppression therapies (AST) in a tertiary paediatric hospital; (ii) patient, provider and hospital factors associated with non-indicated prescribing; and (iii) medication costs. METHODS: This was a prospective, electronic medical audit conducted at The Royal Children's Hospital (RCH) Melbourne in August-September 2016. Proton pump inhibitor (PPI) and histamine-2 receptor antagonist (H2 RA) prescriptions were extracted, with relevant patient, provider and hospital data. Logistic regression analysis of variables associated with indicated and non-indicated prescribing was undertaken. Costs of indicated and non-indicated prescriptions were estimated, with annual costs projected. RESULTS: There was more non-indicated than indicated prescribing across inpatient, outpatient and emergency department settings. Of the total 303 prescriptions analysed, 238 (78.5%) were non-indicated. Gastrostomy presence (odds ratio (OR) 5.51 (1.96-15.46), P = 0.001), consultant providers (OR 2.69 (1.23-5.87), P = 0.01) and inpatient setting (OR 2.35 (1.16-4.77), P = 0.02) were all associated with a higher likelihood of non-indicated prescribing. The child having a predisposing diagnosis was significantly associated with indicated prescribing (OR 0.41 (0.21-0.80), P = 0.009). A total of 75% of hospital and patient spending was for non-indicated prescriptions. Annual costs of non-indicated AST for Melbourne's RCH were projected to be $15 493. CONCLUSIONS: Non-indicated acid-suppression prescribing is common in a tertiary paediatric hospital and associated with gastrostomy presence, consultant providers and inpatient status. Future research should use qualitative methods to understand clinician and patient drivers of prescribing and use this information to develop and test targeted solutions to reduce non-indicated AST prescribing.
Subject(s)
Drug Prescriptions/statistics & numerical data , Gastroesophageal Reflux/drug therapy , Health Care Costs , Inappropriate Prescribing/statistics & numerical data , Proton Pump Inhibitors/therapeutic use , Australia , Child , Cohort Studies , Female , Gastroesophageal Reflux/diagnosis , Hospitals, Pediatric , Humans , Inappropriate Prescribing/economics , Logistic Models , Male , Medical Audit/methods , Odds Ratio , Practice Patterns, Physicians' , Prospective Studies , Severity of Illness Index , Tertiary Care CentersABSTRACT
Congenital disorders of glycosylation (CDG) represent an expanding family of metabolic disorders with a wide range of biochemical, molecular and clinical phenotypes. ALG3-CDG (CDG-Id), due to a defect in endoplasmic reticulum (ER) mannosyltransferase VI, is one of the less common types of CDG-I. We describe two Vietnamese siblings with confirmed ALG3-CDG (CDG-Id) by molecular testing. As far as we are aware, they are the oldest reported patients in the literature at 15 and 21years. They share similar clinical features with previously reported patients including facial dysmorphism, severe psychomotor retardation, microcephaly, seizures, and gastrointestinal symptoms. Furthermore, our sibling pair highlights the intrafamilial variability, the natural clinical course of ALG3-CDG (CDG-Id) and the benefit of reassessing patients with undiagnosed and complex syndromes, particularly when they present with neurological deterioration.