A psychologist frequently saw patients with sickle cell disease expressing confusion and frustration about changes to their treatment plan caused by greater restrictions on opioid medications. After witnessing a conversation between a patient and the medical team, Siddika Mulchan, PsyD, became moved to explore interventions to address this important issue.
“Challenges in pediatric sickle cell disease pain management abound, both in the clinical setting and in the context of research,” says Mulchan, a pediatric hematology/oncology psychologist at the Center for Cancer & Blood Disorders at Connecticut Children’s. “Patients with sickle cell disease remain an understudied population."
In a recent analysis, the authors discovered federal funding was greater per person with cystic fibrosis vs. sickle cell disease, and significantly more research articles and drug approvals were found for cystic fibrosis vs. sickle cell disease.1 “Additional challenges related to sickle cell disease pain management, in the context of research, include appropriate assessment of sickle cell disease pain,” Mulchan says.
Mulchan and colleagues found implicit bias, health-related stigma, and potential neurocognitive impairment present challenges in ethical decision-making for youth with sickle cell disease.2 “There are misperceptions of patients as drug-seeking, concerns about balancing treatment side effects with achieving adequate pain relief, medical mistrust, and poor adherence to treatment recommendations,” Mulchan reports.
To address these issues, Mulchan and colleagues developed an Integrated Ethical Framework for Pain Management. The goal is to facilitate ethical decision-making and promote health equity. “Research has documented a long-standing history of ethical injustices among the sickle cell disease population, including significant health disparities in disease outcomes, research funding, and quality of life in comparison to other chronic conditions,” Mulchan notes. “These inequities have been tied to sickle cell disease being characterized as ‘Black disease,’ and evidence of racial disparities in healthcare are salient to patients with sickle cell disease.”
The tool characterizes pain as its own distinct problem, deserving of appropriate treatment. “Pain in sickle cell disease is often viewed as a symptom of the disease or a medical complication,” Mulchan explains.
The tool proposes healthcare providers should use the patient’s subjective report of their pain experience as data for informing treatment recommendations. “Often, the subjectivity of pain is a point of contention in pain assessment, particularly when physiological data do not support a patient’s report of pain,” Mulchan notes.
The new model posits it is the responsibility of healthcare providers to alleviate patients’ suffering caused by pain, regardless of the cause. “This collaborative and empathic approach appeared to be well-suited for patients and families with sickle cell disease, who commonly report poor patient-provider communication and relationships,” Mulchan says.
REFERENCES
- Farooq F, Mogayzel PJ, Lanzkron S, et al. Comparison of US federal and foundation funding of research for sickle cell disease and cystic fibrosis and factors associated with research productivity. JAMA Netw Open 2020;3:e201737.
- Mulchan SS, Wakefield EO, Martin SR, et al. Navigating ethical challenges for pediatric sickle cell pain management in the context of the opioid epidemic. Clin J Pain 2021;38:88-94.
A new tool characterizes sickle cell disease pain as its own distinct problem, deserving of appropriate treatment. The tool suggests healthcare providers use the patient’s subjective report of their pain experience as data for informing treatment recommendations.
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