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OP0328-HPR Patients’ views on routine collection of patient-reported outcomes in rheumatology care – a danbio focus group study
  1. J. Primdahl1,
  2. D.V. Jensen2,
  3. R.H. Meincke2,
  4. K.V. Jensen3,
  5. C. Ziegler3,
  6. S.W. Nielsen3,
  7. L. Dalsgaard3,
  8. M. Kildemand4,
  9. M.L. Hetland5,
  10. B.A. Esbensen6
  1. 1King Christian X’s Hospital for Rheumatic Diseases, University of Southern Denmark, Graasten
  2. 2The Danbio registry, Rigshospitalet
  3. 3Patient research partner, Copenhagen
  4. 4Odense University hospital, Odense
  5. 5The Danbio registry, Rigshospitalet, University of Copenhagen
  6. 6Rigshospitalet, University of Copenhagen, Copenhagen, Denmark


Background Patient Reported Outcomes (PROs) are important for shared decision-making regarding treatment. The DANBIO registry, which has included >60 000 patients (>5 00 000 visits), routinely collects PROs (health assessment questionnaire (HAQ), visual analogue scales for pain, fatigue and global health, patient acceptable symptom state (PASS) and an anchor) on touch-screens in the waiting room, as part of rheumatology standard care.1 The aims of DANBIO are to 1) monitor the disease in individual patients, 2) improve treatment quality, 3) conduct research. Patients’ experience with the collection of PROs in DANBIO has not been explored

Objectives To explore patients’ views on the collection of PROs in rheumatoid arthritis (RA), psoriatic arthritis (PsA) and ankylosing spondylitis (AS)

Methods We conducted a qualitative study based on one semi-structured focus group interview in each of the five geographical regions in Denmark. The analysis of the transcribed interviews was based on content analysis.2 Four patient research partners were involved in all phases of the study

Results In total, 32 adult patients with RA (n=21), PsA (n=6) or AS (n=5) participated. 21 (66%) were female, mean age 60 years (range 32–80).

The analysis identified an overarching theme Potential for improvement of communication referring to patients’ perception that PROs have the potential to inspire both patients and clinicians to prepare for and improve dialogue in the consultation. In addition, four subthemes emerged.1 Lack of information about why the data is collected referring to patients’ uncertainty as to whether the PROs aimed primarily at monitoring their own disease, to save money or for research purposes. Questions regarding who gets access to data (in addition to the rheumatologist or nurse), and if data were sold to external parties, were also expressed.2 Validity of the data referring to patients’ concerns about how to reply ‘correctly’. The fluctuations in disease activity and timing in relation to pharmacological treatment affected the patients’ answers. They were uncertain whether answers should reflect their present state or an average of disease manifestations since their last visit. Patients were also uncertain regarding the reference; should they compare to healthy individuals or to when the arthritis is as good as it can be. Some chose to answer as if they were doing worse or better than they actually felt, in order to enter into dialogue with the clinician or because they were worried that medical treatment would be withdrawn.3 Inclusion of the PROs in the consultation referring to patients’ experiences varying from no use of the PROs at all to detailed review with the rheumatologist or nurse

Conclusions Systematic information and continuous dialogue regarding the purpose of the collection of PROs, how to answer the PROs and active use of the answers in the consultations are important for patients with arthritis

References [1] Ibfelt E. et al. Clin Epid2016;8.

[2] Graneheim UH, Lundman B. Nurse Educ Today2004;24.

Disclosure of Interest None declared

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