Patient and Family Opioid Decision-Making for Pain Management in Sickle Cell Disease: A Qualitative Study

Phillips, Shannon; Schlenz, Alyssa M; D'Alton, Shannon V.; Johnson, Mary Ann; Kanter, Julie

doi:10.1016/j.jpain.2023.02.022

Cited by 4 publications

(4 citation statements)

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“…8,12,16 However, findings from a qualitative study suggest that the decision-making process behind home-based opioid use among both young adults with SCD and caregivers of youth with SCD may be complex and involve a range of factors not related to pain severity, including age, stress, and negative emotions. 9 The current study is focused on investigating biopsychosocial factors beyond pain with SCD, baseline optimism did not significantly predict percentage of days youth used opioids, but moderated the association of average pain intensity and opioid use such that high pain was only associated with a higher percentage of days of opioid use at high and medium levels of optimism. 16 A 2-week electronic daily diary study of 32 youth with SCD found that when controlling for daily pain intensity, higher negative affect was associated with an increased likelihood of opioid use.…”

Section: Introductionmentioning

confidence: 83%

“…5,6 A majority of pain episodes among youth living with SCD are treated at home, commonly using a combination of non-opioid and opioid analgesics. [7][8][9] Opioids are a common and essential treatment for acute pain among youth living with SCD, with an estimated 46.3% of youth with SCD aged 10-19 using opioids. 10 In a 2020 daily diary study of 32 youth with SCD aged 10-18, 34% reported using opioid analgesics on at least one diary day over 14 days.…”

Section: Introductionmentioning

confidence: 99%

“…In a qualitative study of young adults with SCD and caregivers of youth with SCD (including some caregiver-youth dyads), participants reported that their (or their child's) pain would have more significant adverse impact on daily functioning and mental health without access to opioids. 9 However, the use of opioids may result in adverse side effects including vomiting, dizziness, and poorer sleep quality, 13,14 while long-term use has been associated with opioid non-responsiveness, physical dependence, and has been proposed to contribute to the development of nociplastic pain, defined by the International Association for the Study of Pain 15 as "pain that arises from altered nociception despite no clear evidence of actual or threatened tissue damage. "…”

Section: Introductionmentioning

confidence: 99%

“…Third, the study only focused on youth-related factors. Results from a qualitative study of young adults with SCD and caregivers of children with SCD indicated that opioid use decision-making often exists along a continuum from caregiver decision to caregiver-child collaborations to youth decisions based on developmental stage of the child and context 9. Thus, future research is needed to examine the influence of caregiver and child-caregiver dyadic influences on opioid use among youth with SCD.…”

mentioning

confidence: 99%

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Investigating home‐based opioid use among youth with sickle cell disease using ecological momentary assessment

Valrie,

Crawford,

Shipman‐Lacewell

et al. 2024

Pediatric Blood & Cancer

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BackgroundOpioids are a common and essential treatment for acute sickle cell disease (SCD) pain. However, opioids carry well‐known adverse side effects, including potential development of hyperalgesia and nociplastic pain. We characterized opioid use in youth with SCD using ecological momentary assessment (EMA) data, and investigated the relationships between home‐based opioid use, pain, and a range of biopsychosocial factors.MethodEighty‐eight youth with SCD (aged 8–17 years) completed EMAs assessing home‐based opioid use, pain, and related factors. Analyses consisted of descriptive and multilevel logistic regression to predict daily home opioid use.ResultsYouth averaged 3.64 weeks of EMAs. Approximately 35% of the sample (n = 31) took an opioid during the EMA period, and used them on only 24% of reported pain days. Youth who took opioids reported a higher percentage of pain days (t = −2.67, p < .05) and mean pain severity scores (t = −2.30, p < .05) than youth who did not take opioids. Multilevel logistic regression analyses indicated that high daily pain severity (odds ratio [OR] = 1.02, p < .01), older age (OR = 1.324, p < .01), and low positive affect (OR = 0.91, p < .01) were each related to an increased likelihood of opioid use.ConclusionYouth with SCD take opioids appropriately in response to their pain, based on daily self‐report. Beyond daily pain severity, age, and daily variation in positive affect were related to home‐based opioid use. This suggests that behavioral interventions that enhance positive affect may promote reduced opioid use among youth with SCD.

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Section: Introductionmentioning

confidence: 83%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

mentioning

confidence: 99%

See 2 more Smart Citations

Investigating home‐based opioid use among youth with sickle cell disease using ecological momentary assessment

Valrie,

Crawford,

Shipman‐Lacewell

et al. 2024

Pediatric Blood & Cancer

View full text Add to dashboard Cite

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Characterizing medical decision‐making in sickle cell disease during childhood: Qualitative perspectives of caregivers

Blakey,

Amaro,

Eilenberg

et al. 2024

Pediatric Blood & Cancer

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IntroductionSickle cell disease (SCD) is the most common genetic disorder among children. As the most common type of SCD, sickle cell anemia (SCA) is associated with severe complications across the lifespan. As parents/caregivers hold primary disease management responsibility during childhood, their involvement in disease management activities, including medical decision‐making, is critical to successful and timely management of pediatric SCD. However, the processes through which caregivers make SCD‐related decisions remain unknown. The current paper examined caregivers’ decision‐making processes and priorities when managing their child's SCD.MethodsParents and primary caregivers (N = 27) of children with SCA (ages 0–12) completed individual semi‐structured qualitative interviews exploring links between caregivers’ decision‐making and both daily and ongoing SCA management practices. Data were transcribed verbatim, cleaned, systematically coded, and analyzed using applied thematic analysis.ResultsParticipating caregivers were primarily Black or African American (88.9%), mothers (81.5%), publicly insured (55.6%), and single (51.9%). Caregivers described medical decision‐making across acute symptom response, preventive disease management, and treatment initiation and/or discontinuation. Across these contexts of disease management, caregivers overarchingly prioritized protecting and improving their child's quality of life. Caregivers’ medical decision‐making processes were influenced by their SCA management experience, acquisition of SCA knowledge, and trust in medical providers. The extent to which these influences impacted caregivers’ decision‐making varied based on disease severity, disease management experience, and time since diagnosis.DiscussionFindings highlight how processes underlying caregivers’ decision‐making are directly influenced and informed by caregivers’ lived experiences. Future work should develop provider‐initiated collaborative interventions to support medical decision‐making.

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“Buprenorphine, It Works so Differently”: Adults with Sickle Cell Disease Describe Transitioning to Buprenorphine for Treatment of Chronic Pain

Prince,

Loeser,

Early

et al. 2024

The Journal of Pain

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Patient and Family Opioid Decision-Making for Pain Management in Sickle Cell Disease: A Qualitative Study

Cited by 4 publications

References 40 publications

Investigating home‐based opioid use among youth with sickle cell disease using ecological momentary assessment

Investigating home‐based opioid use among youth with sickle cell disease using ecological momentary assessment

Characterizing medical decision‐making in sickle cell disease during childhood: Qualitative perspectives of caregivers

“Buprenorphine, It Works so Differently”: Adults with Sickle Cell Disease Describe Transitioning to Buprenorphine for Treatment of Chronic Pain

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