Chronic pain means greater disability for young people with sickle cell: Study
'Precise treatments' needed to ease pain burden, improve quality of life
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Chronic pain among adolescents and young adults with sickle cell disease (SCD) is associated with more functional disability — meaning patients are less able to independently perform daily activities such as bathing, dressing, eating, or working — as well as lower health-related quality of life, according to a new U.S. study.
In addition to a greater pain burden, the findings showed that young SCD patients with chronic pain had significantly higher scores on anxiety, depression, and fatigue measures, and experienced sensory changes to pressure and temperature.
“This study suggests that there are unique characteristics of chronic SCD-related pain in youth with varying disabilities and psychosocial needs,” the team wrote, calling for “more precise treatments to alleviate suffering and improve the quality of life” for these patients.
The study’s findings, the researchers say, “may assist nurses, healthcare providers, and caregivers in understanding the significant pain burden that chronic pain imposes on [adolescents and adults] living with SCD.”
The study, “Sensory, Inflammatory, and Psychosocial Characteristics of Chronic Pain in Adolescents and Young Adults With Sickle Cell Disease,” was published in the Journal of Pediatric Hematology/Oncology Nursing.
A genetic disease, SCD is marked by the production of a faulty version of adult hemoglobin — the protein that allows red blood cells to carry oxygen — that causes red blood cells to acquire a sickle-like shape. Sickle cells are prone to getting stuck in blood vessels, which can block blood flow and lead to painful episodes known as vaso-occlusive crises (VOCs).
“Acute pain episodes can begin in early infancy and increase in frequency with age,” the researchers wrote.
Meanwhile, chronic pain can start to occur in adolescence and “severely impair daily physical and psychosocial functioning, leading to a high pain burden and increased healthcare utilization,” the team noted.
Investigating the factors behind chronic pain in SCD
To learn more about chronic pain in adolescents and young adults with SCD, a team of researchers from the University of Connecticut and the University of Florida set out to evaluate the biological, psychological, and social factors underlying it. Their study enrolled 19 individuals with chronic pain and four pain-free patients, who served as controls.
All were treated at a single U.S. clinic. Most participants in both groups were females and had the HbSS genetic profile, which is typically associated with more severe disease. The median age was 17.58 years in the chronic pain group and 13 years in the pain-free group.
The participants with chronic pain had significantly more hospitalizations and emergency department/clinic visits, as well as higher pain intensity and more pain sites, than those without pain, the researchers found.
Additionally, psychosocial measures of anxiety, depression, and fatigue were significantly higher in the chronic pain group compared with the pain-free group. The group with pain also had higher levels of pain interference — how pain disrupts daily life — and pain burden. Functional disability was also higher in participants with chronic pain, while mobility was significantly lower.
Those with chronic pain also reported a significantly lower quality of life, particularly in pain and hurt domains, meaning they rated their pain as more severe than the pain-free group. These individuals also reported significantly lower quality of life related to pain impact, worrying, symptoms and treatments, and communication.
Quantitative sensory tests showed that participants with chronic pain had significantly lower sensitivity to physical force or pressure and higher sensitivity to temperature than those without pain. No significant group differences were observed in levels of inflammation markers in saliva.
“These results indicate that it took more mechanical stimulus to reach the pain threshold of the chronic SCD pain group. However, the chronic SCD pain group detected warm sensations earlier than the pain-free group,” the researchers wrote.
Importantly, according to the researchers, “these sensory changes … may affect some therapies often used in sickle cell pain, such as heat, massage, and physical therapy.”
Patients in 3 pain groups all report lower quality of life
Participants with chronic pain were classified with the ACTTION-APS Pain Taxonomy into three groups: pain with contributory disease complications, pain without contributory disease complications, and mixed pain types. Pain with contributory disease complications means there is evidence of SCD complications that might explain pain.
Patients with mixed pain types had significantly higher pain burden, functional disability, fatigue, pain interference, and lower mobility than those in the pain-free group. Additionally, all three pain groups had a significantly lower quality of life in the domains of pain and hurt and pain impact.
Individuals with pain without contributory diseases or mixed pain types also reported significantly lower quality of life related to symptoms and treatment than those in the pain-free group. Those with pain without contributory diseases also reported a higher pain burden.
“Additional research is needed to explore these differences further,” the researchers wrote, noting that “other critical psychosocial measures could be utilized to investigate other areas” related to pain in young people with SCD.
