Kate Williams and Andrew Lloyd recently published the paper ‘Health state utilities associated with caring for an individual with cutaneous T-cell lymphoma (CTCL)’ in the Journal of Medical Economics. The full text is available here.
On Monday 8th June, Associate Director Siu Hing Lo will be moderating a free ISPOR webinar entitled ‘Why and How to Use Qualitative Research Methods in Conjunction with Discrete Choice Experiments in Healthcare’. You can sign up here.
Earlier this week, Acaster Lloyd Consulting presented two posters at Virtual ISPOR 2020. These describe two preference studies in spinal muscular atrophy (SMA) led by Andrew Lloyd and Siu Hing Lo. One study examined patient and caregiver treatment preferences in SMA. The other study estimated disutilities for SMA using results from a general population discrete choice experiment. You can view copies of the posters here and here.
Siu Hing Lo, Natalia Piglowska and Andrew Lloyd recently co-authored the paper ‘Exploring the burden of X-linked hypophosphatemia: a European multi-country qualitative study’ in Quality of Life Research. The full text is available here.
This morning Andrew Lloyd is presenting a talk entitled ‘Measuring children’s health and HRQL with EQ-5D-Y: Values, scores and decisions’ at the 4th EuroQol Academy meeting in Prague. Please get in touch if you would like further information.
The SMC have recently approved Luxturna (a gene therapy for a rare type of inherited retinal dystrophy) and Crysvita (a treatment for X-linked hypophosphataemia which is a rare skeletal disorder). Both submissions highlight the challenges in understanding the impact of very rare conditions on patients’ health related quality of life (HRQL). Acaster Lloyd Consulting Ltd worked with both of these companies to capture data regarding the impact of the disease and treatment on HRQL; data which was used to inform cost effectiveness analyses. In their review of both treatments the SMC highlighted uncertainty regarding the HRQL data because the methods relied in part upon expert opinion. We are keen to highlight this in order to illustrate the challenges we face in capturing HRQL data in rare diseases. The treatments will be available for use in Scotland for 3 years while the companies collect more data on the impact of the treatments on patients and carers.
Decision making regarding the adoption of very high price, potentially very high value treatments is probably the most challenging area of Health Technology Assessment. Read more about the news from the SMC here.
Our director Andrew Lloyd recently wrote a commentary entitled “Cognitive decline may not be adequately captured in economic evaluations of multiple sclerosis: are new treatments being undervalued?” in Neurology. The full text is available here.
Our director Andrew Lloyd and senior research manager Katy Gallop recently co-authored the paper “Estimation of the quality of life benefits associated with treatment for spinal muscular atrophy” in ClinicoEconomics and Outcomes Research. The full text is available here.
Our director Sarah Acaster led a study team to develop the first cystic fibrosis disease specific preference-based scoring algorithm based on the Cystic Fibrosis Quality of Life – Revised Questionnaire (CFQ-R). If you’re at the North American Cystic Fibrosis Conference (NACFC) this week you can be the first to see the results of this work in Poster Session 1, tomorrow at 11:15 – 1:45: ‘Development of the CFQ-R preference-based scoring algorithm’.
Our director Andrew Lloyd and research associate Natalia Piglowska recently co-authored a paper entitled ‘Estimation of impact of RPE65-mediated inherited retinal disease on quality of life and the potential benefits of gene therapy’ in the British Journal of Ophthalmology.