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Tapering Biologic Therapy for Rheumatoid Arthritis: A Qualitative Study of Patient Perspectives

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Abstract

Background and objective

Biologic therapies are cost effective for active rheumatoid arthritis but have adverse effects and are costly. Tapering of biologics is emerging as an important consideration when sustained remission is achieved. Recent trials have highlighted the clinical feasibility of tapering, but there is little evidence on how proposed tapering would be received by patients. The aim of this study was to explore factors influencing hypothetical decisions of patients with rheumatoid arthritis on tapering their biologics and their perspectives on remission and flare when considering the possibility of tapering.

Methods

Patients with rheumatoid arthritis with diverse experiences of biologics with different modes of administration were purposively sampled to participate in one of six focus groups (n = 43) or an individual interview (n = 2). Transcripts were analyzed using inductive thematic analysis.

Results

Five overarching themes on what influences a participant’s decision to taper their biologic were identified. First, participants were fearful of uncertain outcomes of tapering, especially flare and joint damage. Second, participants prioritized quality of life from continuing biologics over the risk of adverse effects. Third, tapering biologics was seen as providing relief from the inconvenience of taking biologics regularly. Fourth, participants wanted assurance of prompt access to healthcare if their rheumatoid arthritis were to flare when tapering. Fifth, preferences for involvement in decision making varied, but fulfilling information needs was desired to aid a patient’s preferred role in decision making on tapering.

Conclusions

This study provides novel insight into the perspectives of patients with rheumatoid arthritis on tapering biologics when sustained remission is achieved at a crucial juncture in global affordability for healthcare systems. These patient perspectives can inform the planning of decision aids and clinical trials of decision-making processes when tapering is proposed.

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Data Availability Statement

The audio recordings and transcripts analyzed during the current study are not publicly available as ethics approval for the study was granted on the basis that the data would not be shared beyond the researchers and this was communicated to participants before they took part.

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Acknowledgements

We thank the participants for their contribution. We also thank Jill Drake and Niamh Fanning for their assistance with recruitment and the conduct of the study.

Author information

Authors and Affiliations

  1. School of Pharmacy, University of Otago, Dunedin, New Zealand

    Suz Jack Chan, Nicola Liebergreen, Henry Ndukwe & Carlo Marra

  2. Department of Medicine, University of Otago, Christchurch, New Zealand

    Lisa K. Stamp

  3. Faculty of Law, University of Otago, Dunedin, New Zealand

    Nicola Liebergreen

  4. Department of Psychology, University of Otago, PO Box 56, Dunedin, 9054, New Zealand

    Gareth J. Treharne

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  1. Suz Jack Chan
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Contributions

LS, CM, and GT contributed to the study conception and design. Material preparation, data collection, and analysis were performed by JC, NL, HN, and GT. The first draft of the manuscript was written by JC and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Gareth J. Treharne.

Ethics declarations

Funding

This work was supported by the Health Research Council of New Zealand (18/776) and the University of Otago Research Fund.

Conflict of Interest

Suz Jack Chan, Lisa K. Stamp, Nicola Liebergreen, Henry Ndukwe, Carlo Marra, and Gareth J. Treharne have no conflicts of interest that are directly relevant to the content of this study.

Ethics Approval

The study and all materials were reviewed and approved by the New Zealand Health & Disabilities Ethics Committee (HEDC 18/CEN/40).

Consent to Participate

All participants in the focus groups and interviews provided written informed consent. Participants agreed that the results of the study may be presented at conferences and published in peer-reviewed journals, provided that no individual participants are identifiable from any publication.

Appendix

Appendix

Contribution of codes from the inductive thematic analysis to the finalized themes

Theme

Contributing codes

Theme 1: Fear of the uncertainty of outcomes

 
 

Fear of ineffectiveness of biologics upon restarting

 

Fear of running out of options with biologics

 

Concerns for the time it takes for biologics to start working

 

Transformative effects of biologics

 

Past experience of severe disease before the introduction of biologics

 

Fear of flare and damage

Theme 2: Prioritizing quality of life over the risk of adverse effects

 
 

Prioritizing quality of life above all else

 

Choosing the lesser of two evils

 

Rationalizing the consequences of adverse effects

 

Concerns about severe side effects of biologics

 

Experience of adverse reactions to biologics

Theme 3: Relief from inconvenience

 
 

Mental burden of taking biologic consistently

 

Emotional and physiological burden of needles to take biologics

Theme 4: Prompt access to healthcare

 
 

Ease of consultation with rheumatologist

 

Ease of access to treat flare after tapering

 

Follow-up procedures throughout the tapering phase

 

Favoring blood test monitoring

 

Fear of losing a place in healthcare after tapering

 

Bad experience of getting access to biologics

Theme 5: Preference for involvement in decision making

 
 

Desire to have more information about treatment

 

Patient’s involvement in treatment

 

Importance of healthcare provider-patient partnership

 

Familiarity with own body’s responses

 

Appreciating clinical evidence of successful tapering

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Chan, S.J., Stamp, L.K., Liebergreen, N. et al. Tapering Biologic Therapy for Rheumatoid Arthritis: A Qualitative Study of Patient Perspectives. Patient 13, 225–234 (2020). https://doi.org/10.1007/s40271-019-00403-9

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