| 1. |
- Janssen, O., et al.
(författare)
-
Real-world evidence in Alzheimer's disease: The ROADMAP Data Cube
- 2020
-
Ingår i: Alzheimers & Dementia. - : Wiley. - 1552-5260 .- 1552-5279. ; 16:3, s. 461-471
-
Tidskriftsartikel (refereegranskat)abstract
- Introduction: The ROADMAP project aimed to provide an integrated overview of European real-world data on Alzheimer's disease (AD) across the disease spectrum. Methods: Metadata were identified from data sources in catalogs of European AD projects. Priority outcomes for different stakeholders were identified through systematic literature review, patient and public consultations, and stakeholder surveys. Results: Information about 66 data sources and 13 outcome domains were integrated into a Data Cube. Gap analysis identified cognitive ability, functional ability/independence, behavioral/neuropsychiatric symptoms, treatment, comorbidities, and mortality as the outcomes collected most. Data were most lacking in caregiver-related outcomes. In general, electronic health records covered a broader, less detailed data spectrum than research cohorts. Discussion: This integrated real-world AD data overview provides an intuitive visual model that facilitates initial assessment and identification of gaps in relevant outcomes data to inform future prospective data collection and matching of data sources and outcomes against research protocols.
|
|
| 2. |
|
|
| 3. |
|
|
| 4. |
|
|
| 5. |
|
|
| 6. |
|
|
| 7. |
|
|
| 8. |
- Bexelius, C, et al.
(författare)
-
Drivers of cost and health-related quality of life in patients with systemic lupus erythematosus (SLE): a Swedish nationwide study based on patient reports
- 2013
-
Ingår i: Lupus. - : SAGE Publications. - 1477-0962 .- 0961-2033. ; 22:8, s. 793-801
-
Tidskriftsartikel (refereegranskat)abstract
- The objective of this paper is to investigate drivers of cost and health-related quality of life (HRQoL) related to disease activity and fatigue among patients with systemic lupus erythematous (SLE). A questionnaire was sent to members of a patient organization with a self-reported diagnosis of SLE, requesting information on demographics and disease characteristics, medications, resource utilization, informal care, loss of productivity, fatigue and HRQoL in relation to SLE. Mean annual costs per patient were estimated from a societal perspective. HRQoL was measured through EQ-5D and fatigue was measured through a 10 cm VAS scale. Patient-reported disease activity was measured through the Systemic Lupus Activity Questionnaire (SLAQ) and corticosteroid dose. Drivers of costs and HRQoL were analyzed through regression analysis. A total of 339 patients out of 737 returned the questionnaire. Mean age was 55; 94% were female. The mean HRQoL measured through the five-item EQ-5D instrument was 0.64 and total costs were estimated at €22,594 (direct costs €7818; indirect costs €14,776). Disease activity, fatigue and corticosteroid doses had a statistically significant impact on costs and HRQoL. This study demonstrates that Swedish patients with SLE have low HRQoL and incur high societal costs and that are both associated with and most likely driven by disease activity, fatigue and corticosteroid use.
|
|
| 9. |
|
|
| 10. |
|
|
