A Qualitative Study of Chronic Pain and Self-Management in Adults with Sickle Cell Disease

• Authors: Nadine Matthie, Emory University; Diana Ross, Emory University; Cynthia Sinha, Emory University; Kirshma Khemani, Emory University; Nitya Bakshi, Emory University; Lakshmanan Krishnamurti, Emory University
• Journal Title: JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION
• Volume: Volume 111, Number 2
• Publisher: NATL MED ASSOC | 2019-04-01, Pages 158-168
• Type of Work: Article | Post-print: After Peer Review
• Publisher DOI: http://doi.org/10.1016/j.jnma.2018.08.001
• Subjects: Health Sciences, Health Care Management; Health Sciences, General; Health Sciences, Epidemiology
• Keywords: Science & Technology; Life Sciences & Biomedicine; Medicine, General & Internal; General & Internal Medicine; Chronic pain; Sickle cell; Adult; Self-management; Needs assessment; YOUNG-ADULTS; CARE; STIGMA

Abstract

Acute, intermittent vaso-occlusive pain is the hallmark of sickle cell disease (SCD) and is associated with substantial morbidity and impaired quality of life (QOL). The subgroup of adults with SCD who transition from recurrent, acute pain to chronic, persistent pain have even greater QOL impairment and higher rates of healthcare utilization. Self-management is central to SCD management; however, its role in chronic pain management is not established. This qualitative study was conducted to answer the following research questions: (1) What is the chronic pain experience of adults with SCD? (2) What self-management strategies do adults with SCD use for chronic pain? and (3) Do adults with SCD have any needs in the self-management of chronic pain? Eighteen Black adults with SCD completed a demographics questionnaire and an interview. The majority of the participants were 21–30 years of age (mean 33.5, SD 7.6), female (61.1%), employed at least part-time (61.1%), single/never married (72.2%), and had a SCD type of sickle cell anemia (55.5%). Interview analysis revealed three major themes: (1) the chronic pain experience; (2) strategies for managing chronic pain; and (3) challenges and needs in managing chronic pain. Study findings can be used to support chronic pain management among adults with SCD. Further research is needed to devise and implement effective strategies for the prevention and management of chronic SCD pain.