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Stakeholder Satisfaction with the Australian Rheumatology Association Database (ARAD)

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Abstract

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 9–10 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 8–10) 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.

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The authors are grateful to the rheumatologists and ARAD participants who responded to the surveys and all members of the ARAD project team (Molly Bond, Chris Reid, Margaret Staples, Robyn Middleton, John Oldroyd) and the ARAD Scientific Advisory Committee. The ARAD is supported by an NHMRC Enabling Grant 384330 (2006–2010), Monash University (2006–2010), and unrestricted grants from Abbott (2003–2006), Amgen (2003–2007), Aventis (2003–2004), Roche (2008), Schering Plough (2003–2004), and Wyeth (2003–2006) paid to the ARA. Infrastructure resources for ARAD are provided by Cabrini Health, Royal North Shore Hospital, and St George Hospital. Andrew Briggs is supported by an NHMRC Postdoctoral Fellowship and Rachelle Buchbinder is partially supported by an NHMRC Practitioner Fellowship. The authors are also grateful to staff at the BSRBR who provided copies of their 2006 survey.

Dr Andrew Briggs was project manager for the ARAD at the time the survey data were collected.

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Authors and Affiliations

  1. Monash Department of Clinical Epidemiology, Suite 41, Cabrini Medical Centre, 183 Wattletree Road, Malvern, Victoria, 3144, Australia

    Andrew M. Briggs, Bridget Murphy, Lainie Wengier &  Rachelle Buchbinder

  2. Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Victoria, Australia

    Andrew M. Briggs, Nino Hay, Bridget Murphy, Lainie Wengier &  Rachelle Buchbinder

  3. School of Physiotherapy, Curtin University of Technology, Perth, Western Australia, Australia

    Andrew M. Briggs

  4. Institute of Bone and Joint Research, University of Sydney, Sydney, New South Wales, Australia

    Lyn March & Lyndall Henderson

  5. Department of Rheumatology, Royal North Shore Hospital, St Leonards, New South Wales, Australia

    Lyn March & Lyndall Henderson

  6. Department of Rheumatology, St George Hospital, Kogarah, New South Wales, Australia

    Rosemarie van den Haak & Marissa Lassere

  7. Faculty of Medicine, University of New South Wales, Sydney, New South Wales, Australia

    Marissa Lassere

  8. General Medical Unit, Royal Melbourne Hospital, Melbourne, Victoria, Australia

    Andrea Bendrups

  9. Royal Women’s Hospital, Melbourne, Victoria, Australia

    Andrea Bendrups

Authors
  1. Andrew M. Briggs
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  2. Lyn March
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  3. Rosemarie van den Haak
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  4. Nino Hay
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  5. Lyndall Henderson
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  6. Bridget Murphy
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  7. Lainie Wengier
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  8. Marissa Lassere
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  9. Andrea Bendrups
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  10. Rachelle Buchbinder
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Correspondence to Rachelle Buchbinder.

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Briggs, A.M., March, L., van den Haak, R. et al. Stakeholder Satisfaction with the Australian Rheumatology Association Database (ARAD). Patient-Patient-Centered-Outcome-Res 2, 61–68 (2009). https://doi.org/10.2165/01312067-200902010-00007

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  • DOI: https://doi.org/10.2165/01312067-200902010-00007

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