scholarly journals Prevalence and predictors of chronic pain intensity and disability among adults with sickle cell disease

2020 ◽  
Vol 7 (1) ◽  
pp. 205510292091725
Author(s):  
Nadine Matthie ◽  
Coretta Jenerette ◽  
Ashley Gibson ◽  
Sudeshna Paul ◽  
Melinda Higgins ◽  
...  

Among 170 adults with sickle cell disease, we evaluated chronic pain impact and disability prevalence, assessed age and gender differences, and identified psychosocial predictors of chronic pain intensity and disability. Most participants had a high level of disability. Chronic pain intensity and disability were significantly associated with pain catastrophizing and chronic pain self-efficacy, and worsened with age. Further research is needed to confirm study findings and develop interventions, including palliative care approaches that address catastrophizing and disability, particularly for young women and middle-aged adults with sickle cell disease. Moreover, consistent clinical assessment of chronic pain and psychosocial health should be implemented.

2019 ◽  
Vol 37 (2) ◽  
pp. 123-128
Author(s):  
Marie L. Suarez ◽  
Judith M. Schlaeger ◽  
Veronica Angulo ◽  
David A. Shuey ◽  
Jesus Carrasco ◽  
...  

Objectives: Sickle cell disease (SCD) is a serious illness with disabling acute and chronic pain that needs better therapies, but insufficient patient participation in research is a major impediment to advancing SCD pain management. The purpose of this article is to discuss the challenges of conducting an SCD study and approaches to successfully overcoming those challenges. Design: In a repeated-measures, longitudinal study designed to characterize SCD pain phenotypes, we recruited 311 adults of African ancestry. Adults with SCD completed 4 study visits 6 months apart, and age- and gender-matched healthy controls completed 1 visit. Results: We recruited and completed measures on 186 patients with SCD and 125 healthy controls. We retained 151 patients with SCD with data at 4 time points over 18 months and 125 healthy controls (1 time point) but encountered many challenges in recruitment and study visit completion. Enrollment delays often arose from patients’ difficulty in taking time from their complicated lives and frequent pain episodes. Once scheduled, participants with SCD cancelled 49% of visits often because of pain; controls canceled 30% of their scheduled visits. To facilitate recruitment and retention, we implemented a number of strategies that were invaluable in our success. Conclusion: Patients’ struggles with illness, chronic pain, and their life situations resulted in many challenges to recruitment and completion of study visits. Important to overcoming challenges was gaining the trust of patients with SCD and a participant-centered approach. Early identification of potential problems allowed strategies to be instituted proactively, leading to success.


2021 ◽  
pp. 096452842110173
Author(s):  
Hongjin Li ◽  
Crystal L Patil ◽  
Robert E Molokie ◽  
Franklin Njoku ◽  
Alana D Steffen ◽  
...  

Objective: Chronic pain is a common symptom experienced among patients with sickle cell disease (SCD). Our aims were to assess the feasibility and acceptability of performing acupuncture for the treatment of chronic pain in adults with SCD. Methods: This was a single-arm, prospective pilot study of six adults with SCD. Participants reported ⩾ 3 months of chronic pain and were > 18 years of age. Per protocol, acupuncture was to be administered twice per week for 5 weeks, for 30 min per session. All treatments were performed in the acupuncture treatment laboratory at the University of Illinois Chicago College of Nursing. Pain intensity, pain interference, and other symptoms were measured at baseline and after the intervention. Participants completed a semi-structured interview and a protocol acceptability questionnaire after the acupuncture intervention. Results: Six participants (mean age 52.5 years, six Black) were enrolled. Although the study was suspended due to COVID-19 and not all participants completed the 10-session protocol, completion rates were high with no missed appointments. One participant did not complete the study due to hospitalization unrelated to acupuncture. No adverse events were reported. At completion of the intervention at 4–5 weeks post-baseline, all participants had reduced pain intensity and pain interference. The mean acceptability score on the protocol acceptability questionnaire was 82%. Conclusion: It was feasible and acceptable to implement acupuncture in adults with SCD. This study can be used to guide a larger randomized controlled trial to evaluate the effect of acupuncture on reducing chronic pain in adults with SCD. Trial registration number: NCT04156399 (ClinicalTrials.gov)


Author(s):  
Madison Irwin ◽  
William Gunther ◽  
Patricia Keefer ◽  
D'Anna Saul ◽  
Sharon Singh ◽  
...  

2012 ◽  
Vol 2 (2) ◽  
pp. 57-60
Author(s):  
Jayanti Mishra ◽  
Sanghamitra Pati ◽  
Mohammad Akhtar Hussain ◽  
Niraj Srivastava ◽  
Sindhubala Mishra

The highest frequency of sickle cell gene in India is reported in Odisha. The present study was taken up to assess the presence of sickle cell disease among febrile patients of a medical college of eastern Odisha. Patients referred from both pediatric and medicine department to the Hematology section of the department of Pathology, SCB Medical College, Cuttack were subjected to measurement of RBC indices, Sickling test, Haemoglobin Electrophoresis and Fetal Haemoglobin Estimation. Out of total 1000 referred patients 76(7.6%) were found to be positive for sickling. Two‐third of sicklingpositive patients had sickle cell trait with electrophoretic AS band. There was a significant association between age and positive sickling (χ2 = 24.357; df = 4, P = <0.0001). No significant association was observed between sickling and gender. Sickle cell positive cases are not uncommon in eastern Odisha. Our study demonstrated sickle cell trait to be more common among screened patients than other forms of sickle cell diseases.


2020 ◽  
Vol 4 (12) ◽  
pp. 2656-2701 ◽  
Author(s):  
Amanda M. Brandow ◽  
C. Patrick Carroll ◽  
Susan Creary ◽  
Ronisha Edwards-Elliott ◽  
Jeffrey Glassberg ◽  
...  

Background: The management of acute and chronic pain for individuals living with sickle cell disease (SCD) is a clinical challenge. This reflects the paucity of clinical SCD pain research and limited understanding of the complex biological differences between acute and chronic pain. These issues collectively create barriers to effective, targeted interventions. Optimal pain management requires interdisciplinary care. Objective: These evidence-based guidelines developed by the American Society of Hematology (ASH) are intended to support patients, clinicians, and other health care professionals in pain management decisions for children and adults with SCD. Methods: ASH formed a multidisciplinary panel, including 2 patient representatives, that was thoroughly vetted to minimize bias from conflicts of interest. The Mayo Evidence-Based Practice Research Program supported the guideline development process, including updating or performing systematic reviews. Clinical questions and outcomes were prioritized according to importance for clinicians and patients. The Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach was used, including GRADE evidence-to-decision frameworks, to assess evidence and make recommendations, which were subject to public comment. Results: The panel reached consensus on 18 recommendations specific to acute and chronic pain. The recommendations reflect a broad pain management approach, encompassing pharmacological and nonpharmacological interventions and analgesic delivery. Conclusions: Because of low-certainty evidence and closely balanced benefits and harms, most recommendations are conditional. Patient preferences should drive clinical decisions. Policymaking, including that by payers, will require substantial debate and input from stakeholders. Randomized controlled trials and comparative-effectiveness studies are needed for chronic opioid therapy, nonopioid therapies, and nonpharmacological interventions.


Blood ◽  
2004 ◽  
Vol 104 (11) ◽  
pp. 3743-3743 ◽  
Author(s):  
Samir K. Ballas ◽  
Carlton Dampier

The transition of medical care of patients with sickle cell disease (SCD) from pediatric to adult providers represents a milestone in their lives. Major concerns among adolescents and young adults about transition include taking responsibility for self, making own decisions, cost of medical care, fear of suboptimal pain management, and reluctance to leave known providers. In this study we present our experience in the process of transition to adult care and its outcome over the last ten years. Adolescents and young adults were given information about the nature of medical care provided by adult internists and hematologists. The sickle cell programs available in the city were described. Moreover, site visits to the hospitals where adult care was to be provided were arranged. During these visits, adolescents and young adults had the chance to meet the hematologist and other potential providers and ask questions, visit the emergency room, the clinic, and the sickle day unit if applicable. Patients were empowered to choose the program to which they wished to be transitioned. During the last 10 years, 90 adolescents and young adults (See Table) with SCD (Sickle Cell Anemia [SS], Hemoglobin SC Disease, and Sickle Thalassemia [ST]) were transitioned to the adult sickle cell program of Thomas Jefferson University. Age of transition varied between 18 and 25 years. Eighteen patients (20%) died. Age at death was 24.9 ± 2.95 years and the male/female ratio was 10:8. Complications of sickle cell disease after transition included leg ulcers, stroke, avascular necrosis, anxiety, depression, and priapism. Nineteen patients (10 males, 9 females) were employed. Twenty-nine (32%) patients developed chronic pain syndrome and its sequelae. Many patients failed to achieve their childhood goals. The data show that a significant number of patients die within 10 years after transition. The quality of life of survivors is suboptimal and drifts into issues of chronic pain management in the adult environment. Identifying these issues may provide predictors that identify children at risk to have undesirable outcomes after transition. Aggressive management and refining the process of transition should improve the outcome after transition. Distribution of the Transitioned Patients SS SC ST Total Male 31 8 4 43 Female 34 8 5 47 Total 65 16 9 90


Blood ◽  
2009 ◽  
Vol 114 (22) ◽  
pp. 2585-2585 ◽  
Author(s):  
Soheir S. Adam ◽  
Charlene Flahiff ◽  
Mary R Abrams ◽  
Marilyn J. Telen ◽  
Laura M. De Castro

Abstract Abstract 2585 Poster Board II-561 A high prevalence of depression has been described in both chronic diseases and diseases associated with chronic pain. Sickle cell disease (SCD) is a congenital and lifelong complex hematological illness in which both acute and chronic pain are described as hallmarks. Depression prevalence has also been reported as high in SCD. Clinical depression may lead to decreased compliance with prescribed medical treatments, and thus deteriorating function and health status. Furthermore, depressed patients report more frequent painful episodes. Pain and depression can also both have negative effects on health-related quality of life (QoL) measures in a chronically ill population. Methods: We performed an analytic epidemiologic prospective study to determine the prevalence of depression (as measured by the Beck Depression Inventory [BDI]) in 70 adult SCD patients at baseline (no pain episodes within 30 days) who receive their SCD disease-related care primarily from our clinic. We also assessed the association between the prevalence of depression, QoL, and severity scores measuring end organ damage as previously described (Afenyi-Annan et al. 2008). To measure mental and physical QoL domains, patients were administered the SF36 QoL scale. A short computerized test, “CNS Vital Signs,” was used to assess patients' neurocognitive function. Pain diaries were used to determine the use of short-term and long-term narcotics. Results: The sample included 38 females and 32 males, ages 19 – 76 years (mean 36). Mean severity score was 1.61 (SD 1.1; range 0–4). Nineteen patients (27%) had clinical depression by BDI. Nine of them (47%) were classified as severe. The gender ratio was 2:1 F:M. Patients with depression were significantly older (mean age 39.8 vs. 35.0 yrs, p<0.05). The ratio of hemoglobin SS versus other sickle-related hemoglobinopathies was 1:1 in those with depression versus 2:1 in those without depression. Severity scores were not statistically different between those with or without depression (1.8 ±1.1 vs. 1.5±1.2). Nineteen of 51 patients (37%) without depression had a prior history of central nervous system events, while only 4 of 19 (21%) with depression did; this difference was not statistically significant. Similarly, no statistical difference in neurocognitive function was noted between patients with and without depression, when tested for the following 5 domains: memory, psychomotor speed, reaction time, complex attention, and cognitive flexibility. Both the physical and mental domains of the QoL testing showed significantly lower scores for those patients with depression when compared with those without depression (p=0.007 and p<0.0001, respectively). For the mental domain, there was also a statistically significant inverse correlation between the level of depression and domain score. Lastly, neither current therapy with long-acting narcotics or antidepressive medications showed association with the presence of depression. Summary: We conclude that there is likely a complex and thus far poorly understood interaction between multiple SCD cofactors and the presence of depression in this patient population. QoL rather than disease severity is the measure most strongly related to depression in our study. Disclosures: No relevant conflicts of interest to declare.


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