Treating Chronic Pain in Sickle Cell Disease — The Need for a Biopsychosocial Model

Childerhose, Janet E.; Cronin, Robert M.; Klatt, Maryanna D.; Schamess, Andrew

doi:10.1056/nejmp2301143

Cited by 13 publications

(2 citation statements)

References 5 publications

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“…50 Despite interest, the majority of participants reported that they were not currently receiving treatment to target chronic pain and expressed a need for additional support, information or strategies, and psychological interventions. 50 Approaching the treatment of pain in SCD from a biopsychosocial rather than a biomedical perspective 54 is gaining momentum with increased appreciation for behavioral interventions that address the unique pain presentations seen in SCD. 55 Behavioral pain interventions are particularly important in addressing pain interference, as there is the variability of the extent to which even disease-modifying therapies (e.g., hydroxyurea) impact pain interference, if at all.…”

Section: Discussionmentioning

confidence: 99%

Feasibility and preliminary efficacy of the Balance Program to reduce pain‐related disability in pediatric sickle cell disease

Connolly,

Forman,

Sharkey

et al. 2023

Pediatric Blood & Cancer

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BackgroundSickle cell disease (SCD) pain is associated with functional impairment, and treatment is often limited to pharmacological approaches with unwanted side effects. Although behavioral interventions exist for non‐SCD pain populations, interventions designed to address pain‐related impairment in SCD are lacking.MethodsTwenty youth (9‐17 years) with SCD completed a four‐week telemedicine pain intervention (NCT04388241). Participants and caregivers completed baseline and post‐intervention PROMIS pain measures and the Treatment Evaluation Inventory‐Short Form (TEI‐SF). Descriptive analyses assessed feasibility and acceptability. Reliable Change Index analyses assessed for significant post‐intervention changes in pain functioning. Paired t test analyses compared baseline and post‐intervention opioid prescription fills.ResultsAll participants completed at least one treatment session. Eighteen (90%) youth completed all sessions. Youth (100%) and caregivers (94%) rated the intervention as moderately or highly acceptable on the TEI‐SF. Forty‐seven percent of caregivers and 44% of youth reported reliably significant improvements in pain interference after the intervention (median T‐score differences: 24.8 and 23.5, respectively). Sixty‐five percent of caregivers (T‐score improvement difference: 19.3) and 31% of youth (T‐score improvement difference: 32) reported improvements in pain behaviors. There was no significant difference in opioid prescription fills pre‐ and post‐intervention (P > 0.05).ConclusionsThe Balance Program is feasible, highly acceptable, and can be delivered remotely to reduce barriers to care. Approximately half of youth and caregivers reported significant declines in pain interference following the intervention, with substantial improvements in functioning for treatment responders. Behavioral pain interventions are important adjunctive treatments to uniquely address functional impairment associated with acute and chronic pain in SCD.

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Section: Discussionmentioning

confidence: 99%

Feasibility and preliminary efficacy of the Balance Program to reduce pain‐related disability in pediatric sickle cell disease

Connolly,

Forman,

Sharkey

et al. 2023

Pediatric Blood & Cancer

View full text Add to dashboard Cite

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“… 15 – 26 Moreover, although the literature has reported a positive association between psychosocial variables and pain in SCD, only a few studies have examined the extent to which psychosocial variables contribute to pain impact and severity when compared to traditional markers of disease severity, such as SCD genotype or hemoglobin. 15 , 25 , 27 Thus, the specific biopsychosocial variables that are most important in predicting pain and pain-related outcomes in SCD have not been clearly elucidated. Cross-sectional and longitudinal studies that include large participant samples from multiple sickle cell centers are required to gain a greater understanding.…”

mentioning

confidence: 99%

Biopsychosocial Factors Associated With Pain and Pain-Related Outcomes in Adults and Children With Sickle Cell Disease: A Multivariable Analysis of the GRNDaD Multicenter Registry

Kenney

Wilson

Shah

et al. 2024

The Journal of Pain

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Assessing Psychosocial Risk and Resilience to Support Readiness for Gene Therapy in Sickle Cell Disease

Hardy,

Crosby,

Porter

et al. 2024

JAMA Netw Open

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ImportanceThe introduction of gene therapies into the clinical care landscape for individuals living with sickle cell disease (SCD) represents a momentous achievement with the potential to rewrite the story of the world’s most prevalent heritable blood disorder. This disease, which was first described in 1910 and did not see a US Food and Drug Administration–approved therapeutic until 1998, is poised to be among the first to realize the promise of gene therapy and genome editing. However, the future of these treatments now rests on how evidence of safety, outcomes, and acceptance in clinical practice unfolds in SCD. Furthermore, historic injustices involving the exploitation of individuals from minoritized racial and ethnic groups in medical contexts necessitate extreme care in ensuring readiness among individuals with SCD considering genetic therapies.ObjectiveTo address a gap in resources focused on patient readiness for gene therapy.Evidence ReviewThe Cure Sickle Cell Initiative organized the Patient Readiness and Resilience Working Group in September 2020. Membership was comprised of behavioral health clinicians and scientists with expertise in SCD, adults with lived experience with SCD, and a caregiver. Over 2 years, the working group developed consensus recommendations and created resources to guide implementation of pregene therapy patient readiness assessments. Recommendations centered on strategies to enhance delivery of education about gene therapy and assess knowledge and understanding, interest and motivation, and psychosocial risk and resilience factors.FindingsFive goals of a pregene therapy patient readiness assessment were identified: (1) gathering information about a patient’s understanding of and perceived readiness for gene therapy; (2) encouraging an open dialogue; (3) providing a conceptualization of psychosocial factors that may influence participation in gene therapy; (4) identifying patient strengths that can be used to promote psychosocial well-being before, during, and after gene therapy; (5) identifying and addressing psychosocial risks.Conclusions and RelevancePatient readiness and psychosocial factors will have tangible implications for the success of gene therapy at individual and collective levels. Health care institutions, industry, payers, policymakers, and clinicians all shoulder responsibility for ensuring that patients with SCD are adequately prepared for gene therapy and supported in ways that optimize readiness and access. Resources described here may be leveraged as a guide to support implementation of pregene therapy assessments of patient readiness and resilience in SCD.

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Treating Chronic Pain in Sickle Cell Disease — The Need for a Biopsychosocial Model

Cited by 13 publications

References 5 publications

Feasibility and preliminary efficacy of the Balance Program to reduce pain‐related disability in pediatric sickle cell disease

Feasibility and preliminary efficacy of the Balance Program to reduce pain‐related disability in pediatric sickle cell disease

Biopsychosocial Factors Associated With Pain and Pain-Related Outcomes in Adults and Children With Sickle Cell Disease: A Multivariable Analysis of the GRNDaD Multicenter Registry

Assessing Psychosocial Risk and Resilience to Support Readiness for Gene Therapy in Sickle Cell Disease

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