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Background Amelogenesis imperfecta (AI) can be challenging to manage due to the complexity and variation of presentation. Clear care pathways between general practice, specialist paediatric dentistry and adult services are required.Aim To assess the provision of specialist care and transitional care arrangements for paediatric patients with AI in the UK.Method An online survey was disseminated to members of the British Society of Paediatric Dentistry in January 2020. Descriptive analysis was used to interpret the quantitative and qualitative results.Results In total, 115 clinicians across all four nations participated. Most respondents (54%; n = 66), were based in the hospital dental service. Overall, 29% (n = 33) were consultants and 24% (n = 28) were specialists in paediatric dentistry. The most common patient age group seen was 6-12 years old. No clear AI referral pathway into specialist care was reported by 49% (n = 47). A clear transitional care pathway was deemed not to exist by 77% (n = 72), with 85.9% (n = 73) indicating a need. Qualitative analysis themes included 'unclear care pathways' and 'specialist care access problems'.Conclusion Access to specialist paediatric dental care and transition to adult services is not readily available throughout the UK for AI patients. There is a clear need to establish and improve existing pathways.
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Background Amelogenesis imperfecta (AI) is a genetic enamel defect that can affect both the primary and permanent dentition. It has a range of clinical phenotypes, and children and young people often present with challenging oral health needs. Patient-reported outcome measures (PROMs) can identify key patient concerns.Methods This was a multi-centre service evaluation across several specialist paediatric dentistry services in the UK. A PROM questionnaire was created with clinician and patient input, through peer review with the national AI Clinical Excellence Network, as well as piloting the PROM with ten children and young people with AI. The final PROM questionnaire was distributed to all patients with AI attending each unit between January and March 2020.Results Sixty children and young people (aged 5-17 years) across four specialist units participated, with 72% reporting that they 'often' or 'sometimes' experienced pain or sensitivity and 76% reporting that they 'often' or 'sometimes' felt unhappy with the way their teeth look. Of the patients who were post-treatment, 81% indicated that they were happy with their teeth, compared to just 41% of patients who were mid-treatment and 33% of patients who were pre-treatment.Conclusion Children and young people with AI experience a range of issues related to their function and psychosocial wellbeing. This simple PROM demonstrates the range of issues this group of patients face, and could be used to monitor an individual's progress to ensure that treatment is planned to address the patient's individual concerns and needs.
RESUMEN
Previous studies have shown that not all cost-effectiveness analyses (CEAs) adhere to recommended guidelines on intertemporal discounting. This analysis investigates adherence in a sample of over 2000 CEAs from seven countries. Guideline discount rates were retrieved for Australia, Belgium, Canada, Ireland, The Netherlands, New Zealand and the UK. Data on the rates applied in published CEAs were retrieved from the Tufts CEA Registry from the sample countries within the periods covered by the discounting guidelines. The relationship between adherence and candidate explanatory factors were assessed using logistic regression. The analysis appraised 2270 CEAs. The overall rate of adherence to discounting recommendations was 79%. Country-specific adherence ranged from 28% in New Zealand to 87% in Belgium and the UK. Adherence in Australia and Canada was 73% and 66%, respectively. Adherence is statistically significantly higher in more recent studies, countries currently applying differential discounting and manufacturer-sponsored studies. Relative to the reference case of Australia, adherence is statistically significantly higher in the UK and lower in Canada and New Zealand. There is notable variation in the rates of adherence to discounting recommendations between countries and over time. Incomplete adherence raises concerns regarding the comparability of evidence between studies. In turn, this raises concerns regarding equity of access to scarce healthcare resources. Journal editors should ensure that adherence to discounting recommendations is assessed as part of the peer review process.
