Quality of Life Research Volume 27 (Suppl 1), 1–190
Aims: The Audit of Diabetes Dependent Quality of Life (ADDQoL) is an individualised questionnaire measuring generic QoL (single item) and diabetes-specific QoL (19 item pairs measuring impact of diabetes on 19 aspects of life, and the importance of each aspect for QoL). Linguistically validated into 84 languages the ADDQoL provides a template for new -DQoL instruments which in turn have contributed to an item bank of 60 items used to create new draft -DQoLs. An ongoing research programme Study of Hallucinations in Parkinson’s, Eye disease and Dementia (SHAPED), provides an opportunity to compare QoL across conditions using different condition-specific -DQoLs.
Method: Initial drafts of the AneurysmDQoL, HIVDQoL, Parkinson’sDQoL, and MemoryDQoL were constructed using existing bank items, chosen following a review of relevant research and consultations with specialist clinicians. Drafts were refined through patient interviews. For the AneurysmDQoL nine focus groups and 13 one-to-one interviews were conducted in the UK. For the HIVDQoL 25 one-to-one interviews were conducted (14 UK participants & 11 US participants). UK interviews with 19 patients were conducted for the Parkinson’sDQoL, Fifteen patients with dementia and their carers were interviewed for the MemoryDQoL. Interviews were conducted in batches and questionnaires refined between batches until no further modifications were required.
Results: The new AneurysmDQoL has 24 domains (16 existing bank items, 5 modified bank items, 1 new item) identified as impacting on the QoL of patients with, or following repair of, an abdominal aortic aneurysm. The HIVDQoL required 26 domains (10 existing, 12 modified and 4 new items). The Parkinson’sDQoL has 23 domains (15 existing, 6 modified and 2 new items). The MemoryDQoL has 17 domains (11 existing, 5 modified and 1 new item). Though few in number, new items in the HIVDQoL, where extensive quantitative data are already available, were rated as more important for QoL and detected more negative impact than existing/modified items.
Conclusion: Design of new condition-specific -DQoLs is expedited by using the existing template and item banks with minimal, but important, additions needed. During SHAPED we will be comparing across different condition-specific -DQoLs when evaluating the impact of interventions to prevent hallucinations.
