What Role Does Caregiver Burden Play in Health Technology Assessment Bodies' Appraisals of Highly Specialized Technologies?
Author(s)
Ofori A1, Llewellyn S2, Bottomley C2, Kousoulakou H2
1Vitaccess Ltd, London, OXF, UK, 2Vitaccess Ltd, Oxford, UK
Presentation Documents
OBJECTIVES Caregiver burden (CB) describes the impact on an individual’s daily life of providing care for a spouse, parent, offspring or other relative with a chronic disease (including rare and ultra-rare) and, while significant, is often overlooked when considering the total burden of such diseases. This study aimed to review whether and how CB has been considered within technology appraisals of drugs in ultra-rare indications. METHODS A review was undertaken of all NICE highly specialized technology (HST) appraisals, and the corresponding CADTH, G-BA, HAS, PBAC and SMC appraisals, initiated up until June 2020. Where appraisals were still in the publication process, evidence submitted to date was reviewed. The review examined whether CB was included, the type of evidence considered, whether it was accepted by the health technology assessment (HTA) body, and whether it was a key consideration in decision-making. RESULTS Eighty-one HST appraisals were identified, covering twenty-one treatments across ultra-rare diseases. CB was considered in 46% of HST submissions. Where evidence of CB was submitted, qualitative findings (comprising impacts on mental health, finances and/or productivity loss) were included in 97% of submissions. Caregiver disutilities from primary and secondary research, and costs (productivity losses, transportation for hospital visits and home adaptations) were submitted as evidence in 51% and 22% of submissions, respectively. When included in submissions, CB was a key consideration in HTA bodies’ decision-making process (89% of submissions), indicated by a critique of its inclusion/exclusion or highlighting CB in their decision-making frameworks. Submitted CB evidence was accepted or rejected in 84% and 16% of appraisals, respectively. CONCLUSIONS CB was included in about half of HST appraisals, most commonly as qualitative evidence. Where included, CB is typically a key consideration in HTA bodies’ decision-making process.
Conference/Value in Health Info
2020-11, ISPOR Europe 2020, Milan, Italy
Value in Health, Volume 23, Issue S2 (December 2020)
Code
PRO80
Topic
Health Service Delivery & Process of Care
Topic Subcategory
Disease Management, Treatment Patterns and Guidelines
Disease
Rare and Orphan Diseases