Stakeholder Satisfaction with the Australian Rheumatology Association Database (ARAD)

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• 作者：Andrew M. Briggs (1) (2) (3)
  Lyn March (4) (5)
  Rosemarie van den Haak (6)
  Nino Hay (2)
  Lyndall Henderson (4) (5)
  Bridget Murphy (1) (2)
  Lainie Wengier (1) (2)
  Marissa Lassere (6) (7)
  Andrea Bendrups (8) (9)
  Professor Rachelle Buchbinder (1) (2)
  
• 刊名：The Patient - Patient-Centered Outcomes Research
• 出版年：2009
• 出版时间：March 2009
• 年：2009
• 卷：2
• 期：1
• 页码：61-68
• 全文大小：128 KB
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• 作者单位：Andrew M. Briggs (1) (2) (3)
  Lyn March (4) (5)
  Rosemarie van den Haak (6)
  Nino Hay (2)
  Lyndall Henderson (4) (5)
  Bridget Murphy (1) (2)
  Lainie Wengier (1) (2)
  Marissa Lassere (6) (7)
  Andrea Bendrups (8) (9)
  Professor Rachelle Buchbinder (1) (2)
  
  1. Monash Department of Clinical Epidemiology, Suite 41, Cabrini Medical Centre, 183 Wattletree Road, Malvern, Victoria, 3144, Australia
  2. Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Victoria, Australia
  3. School of Physiotherapy, Curtin University of Technology, Perth, Western Australia, Australia
  4. Institute of Bone and Joint Research, University of Sydney, Sydney, New South Wales, Australia
  5. Department of Rheumatology, Royal North Shore Hospital, St Leonards, New South Wales, Australia
  6. Department of Rheumatology, St George Hospital, Kogarah, New South Wales, Australia
  7. Faculty of Medicine, University of New South Wales, Sydney, New South Wales, Australia
  8. General Medical Unit, Royal Melbourne Hospital, Melbourne, Victoria, Australia
  9. Royal Women’s Hospital, Melbourne, Victoria, Australia
  

文摘

Background: The Australian Rheumatology Association Database (ARAD) is a voluntary national registry for monitoring the long-term benefits and safety of biological disease-modifying anti-rheumatic drugs (bDMARDs) for inflammatory arthritis. Both rheumatologists and patients contribute data to the ARAD. Objective: To evaluate the satisfaction of patients and rheumatologists with the ARAD. Methods: Cross-sectional surveys were distributed to a random sample of 100 community-dwelling ARAD patients in 2007 and to rheumatologists attending the 2007 Australian Rheumatology Association (ARA) annual scientific meeting. Survey questions included items about the usefulness of the ARAD, workload for participants, frequency of questionnaires, and experience of contact with ARAD staff. Results: A total of 92.5% of patients perceived the ARAD as very important (scoring 9-0 on a numeric rating scale). Patients reported minimal difficulty in completing questionnaires, and 95.0% indicated that a 6-month interval between questionnaires was reasonable. Of responding rheumatologists, 32.3%, 62.1%, and 53.8% indicated that the ARAD was very important (scoring 8-0) with respect to clinical information, research, and the profession, respectively, while 68% of those participating in the ARAD reported that the workload required to enroll patients was manageable and 30% found it difficult or onerous. Conclusion: Key stakeholders in the ARAD view it as an important resource and are satisfied with its operations. Efforts will be directed towards assisting those rheumatologists who find the associated workload difficult and to improving the perceived clinical value of information available from the ARAD.