How sickle cell disease patients experience, understand and explain their pain: An Interpretative Phenomenological Analysis study

Purpose – The purpose of this paper is to detail experiences that sickle cell disease (SCD) patients associate with healthcare justice and injustice in pain control. Design/methodology/approach – A content analysis study of open-ended comments written by 31 participants who completed a 20-item healthcare injustice questionnaire-revised twice: once in reference to experiences with doctors and once in reference to experiences with nurses. Findings – Participants’ mean age was 33±10 years; most were African-Americans and women. Themes showed: the four domains of healthcare justice were represented in patients’ comments; examples of justice and injustice were provided; specific incidents and interactions with healthcare providers were memorable to patients; and setting was a factor important to healthcare experiences because expectations about services vary by setting. Research limitations/implications – Patients were self-selected. Future work will include qualitative interviews and focus groups to uncover more details about how patients experience healthcare injustice. Practical implications – Additional training is needed for SCD providers and about proper management of sickle cell pain; educational modules are also needed that address areas of healthcare injustice by patients. Originality/value – The authors are the first to report how patients define healthcare justice and injustice. Specific details about memorable SCD patient-provider interactions and pain control are described.

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Genomics and Pain Research in Sickle Cell Disease: An Explanation of Heterogeneity?

ISRN Nursing ◽

10.5402/2011/672579 ◽

2011 ◽

Vol 2011 ◽

pp. 1-6 ◽

Cited By ~ 12

Author(s):

Maxine Adegbola

Keyword(s):

Chronic Pain ◽

Sickle Cell Disease ◽

Sickle Cell ◽

Major Complication ◽

Cell Disease ◽

Adequate Quality ◽

Gch1 Gene ◽

Patients Experience ◽

Sensitivity To Pain

Sickle cell disease (SCD) is a chronic illness, and the major complication, pain, results in complex multidimensional problems that affect an individual's ability to maintain adequate quality of life in multiple areas. Chronic SCD pain is inadequately treated, because it is not well understood, and the degree of chronic pain, clinical presentation, and sequela complications can vary from patient to patient, even among individuals with the same SCD genotype. The reason for this variation is unknown, but the underlying cause might be genetic. Researchers have not explored the contribution of a genomic variable to the occurrence of heterogeneous chronic SCD pain. Previous research on the guanosine triphosphate cyclohydrolase (GCH1) gene suggests that in some cases, phenotypic heterogeneity in human sensitivity to pain correlates with underlying genotypic variations in the GCH1 gene. These findings imply that genotypic variations might also explain why some SCD patients experience more chronic pain than others.

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Optimizing the management of chronic pain in sickle cell disease

Hematology ◽

10.1182/hematology.2020000143 ◽

2020 ◽

Vol 2020 (1) ◽

pp. 562-569

Author(s):

Ifeyinwa Osunkwo ◽

Hazel F. O'Connor ◽

Elna Saah

Keyword(s):

Chronic Pain ◽

Sickle Cell Disease ◽

Sickle Cell ◽

Management Strategies ◽

Chronic Fatigue ◽

Opioid Therapy ◽

High Dose ◽

Cell Disease ◽

Psychiatric Illnesses ◽

Patients Experience

Abstract Chronic pain in sickle cell disease (SCD) refers to pain present on most days lasting over six months. It can start during childhood and the prevalence increases with age. By adulthood, over 55% of patients experience pain on over 50% of days; 29% reporting pain on 95% of days. The true prevalence of chronic pain in SCD is likely underappreciated as it is mostly managed at home. Patients with chronic pain and SCD frequently seek acute care for exacerbation of underlying chronic pain difficult to distinguish from their usual acute vaso-occlusive crises. When treating chronic pain in SCD, the challenge is distinguishing between non-SCD related etiologies versus chronic pain resulting from SCD pathophysiological processes. This distinction is important to delineate as it will drive appropriate management strategies. Chronic pain in SCD has profound consequences for the patient; is often associated with comorbid psychiatric illnesses (depression and anxiety), not dissimilar from other chronic pain syndromes. They may also experience challenges with sleep hygiene, various somatic symptoms, and chronic fatigue that impair quality of life. How best to treat chronic pain in SCD is not definitively established. Both acute and chronic pain in SCD is typically treated with opioids. Emerging data suggests that chronic opioid therapy (COT) is a suboptimal treatment strategy for chronic pain. This review will discuss the complexity of managing chronic pain in SCD; pain that may be dependent or independent of the underlying SCD diagnosis. We will also describe alternative treatment approaches to high-dose COT.

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