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Patient Goals for Living with Rheumatoid Arthritis: A Qualitative Study

Author

Listed:
  • Melanie J. Cozad
  • Lisa C. Lindley
  • Kaitlyn Crosby
  • Noor Alshareef
  • Ann Blair Kennedy
  • Gulzar Merchant
  • Pam Evans
  • Ronnie D. Horner

Abstract

Rheumatoid arthritis is highly individualized in terms of its flare ups and periods of remission. Each patient’s unique experience requires a high level of personalization in terms of treatment making it necessary to understand what their goals for living are. This study explores patient perceptions on how the burden of RA shapes patients’ goals for living and their preferences for symptom and side-effect management within the United States. Fifteen patients diagnosed with RA with varying lengths of diagnosis were interviewed. A thematic analysis was conducted to construct a conceptual framework. Emerging themes identified disease burdens as: (1) inability to perform essential needs, (2) negative feelings about disease, and (3) its influence on relationships. These burdens shaped desired goals for living which guided the symptom and side-effect priorities the patient wanted managed. Practitioners should consider patient goals and preferences in conjunction with disease progression when engaging in treatment decisions.

Suggested Citation

  • Melanie J. Cozad & Lisa C. Lindley & Kaitlyn Crosby & Noor Alshareef & Ann Blair Kennedy & Gulzar Merchant & Pam Evans & Ronnie D. Horner, 2023. "Patient Goals for Living with Rheumatoid Arthritis: A Qualitative Study," Clinical Nursing Research, , vol. 32(1), pages 40-48, January.
    • Handle: RePEc:sae:clnure:v:32:y:2023:i:1:p:40-48
    DOI: 10.1177/10547738221075784
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    References listed on IDEAS

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    1. Colin H. Ridyard & Dalia M. M. Dawoud & Lorna V. Tuersley & Dyfrig A. Hughes, 2016. "A Systematic Review of Patients’ Perspectives on the Subcutaneous Route of Medication Administration," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 9(4), pages 281-292, August.
    2. Karin Schölin Bywall & Jorien Veldwijk & Mats G. Hansson & Ulrik Kihlbom, 2019. "Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 12(3), pages 297-305, June.
    3. Elizabeth Clearfield & Ellen Tambor & Ellen M. Janssen & Donna A. Messner, 2021. "Increasing the Patient-Centeredness of Health Economics and Outcomes Research Through Patient Engagement in Core Outcome Set Development," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 14(4), pages 413-420, July.
    4. Suz Jack Chan & Lisa K. Stamp & Nicola Liebergreen & Henry Ndukwe & Carlo Marra & Gareth J. Treharne, 2020. "Tapering Biologic Therapy for Rheumatoid Arthritis: A Qualitative Study of Patient Perspectives," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 13(2), pages 225-234, April.
    5. José Luis Pablos & Juan Angel Jover & José Andrés Roman-Ivorra & José Inciarte-Mundo & Tatiana Dilla & José Antonio Sacristan & Marta Comellas & Luís Lizán, 2020. "Patient Decision Aid (PDA) for Patients with Rheumatoid Arthritis Reduces Decisional Conflict and Improves Readiness for Treatment Decision Making," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 13(1), pages 57-69, February.
    6. Elisabeth M. Oehrlein & T. Rose Love & Chinenye Anyanwu & Maya L. Hanna & Jacqueline Kraska & Eleanor M. Perfetto, 2019. "Multi-Method Patient-Engagement Approach: A Case Example from a PCORI-Funded Training Project," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 12(2), pages 277-280, April.
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