A QST‐based Pain Phenotype in Adults With Sickle Cell Disease: Sensitivity and Specificity of Quality Descriptors

Dyal, Brenda W; Ezenwa, Miriam O.; Yoon, Saunjoo L.; Fillingim, Roger B.; Yao, Yingwei; Schlaeger, Judith M.; Suarez, Marie L.; Wang, Zaijie J.; Molokie, Robert E.; Wilkie, Diana J.

doi:10.1111/papr.12841

Cited by 12 publications

(4 citation statements)

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“…Similar to these findings, QST has been unable to differentiate persons with painful diabetic neuropathy from those with painless neuropathy (14,15). However, Dyal et al (16) found that SCD subjects classified as sensitized on QST (based on the author's diagnostic decision tree) scored higher on the Neuropathic Pain Symptom Inventory and a weighted score of the PAINReportIt questionnaire.…”

Section: Discussionmentioning

confidence: 99%

Assessing neuropathic pain in sickle cell disease: How useful is quantitative sensory testing?

Ramsay

Francis

Bartlett

et al. 2021

Preprint

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Quantitative sensory testing (QST) is a psychophysical test of sensory function which may assist in assessing neuropathic pain (NP). This study compares QST findings with a standardized NP questionnaire to assess their agreement among Jamaicans with sickle cell disease (SCD). A cross sectional study consecutively recruited SCD patients 14 years and older, not pregnant, and without history of clinical stroke or acute illness in Kingston, Jamaica. QST identified thresholds for cold detection, heat detection, heat pain and pressure pain at the dominant thenar eminence, opposite dorsolateral foot and the subject’s most frequent pain site. The Douleur Neuropathique 4 (DN4) was interviewer-administered to diagnose NP. Subjects were divided into low and high sensitization groups if below the 5th and above the 95th percentiles, respectively on QST measures. Kappa agreement coefficients, and receiver operator characteristic (ROC) curves were performed to compare QST with the DN4. Two-hundred and fifty-seven SCD subjects were recruited (mean age 31.7 ± 12.2 years, 55.7% female, 75% SS genotype). Kappa agreements were fair (0.2-0.4) to good (0.6-0.8) between DN4 individual items of itching, hypoesthesia to touch, hypoesthesia to pinprick and brush allodynia with various QST sensitization groups. However, kappa agreements between the NP overall diagnosis on the DN4 with sensitization groups were poor (<0.2). Only heat detection (0.75) and heat pain (0.75) at the leg as a pain site showed satisfactory area under the curve (>0.7). QST may assist in assessing individual components of NP but its use should be limited as a tool to augment clinical assessments.

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Section: Discussionmentioning

confidence: 99%

Assessing neuropathic pain in sickle cell disease: How useful is quantitative sensory testing?

Ramsay

Francis

Bartlett

et al. 2021

Preprint

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“…Written informed consent of adult participants (aged 18 or older), and child assent and parental consent for participants under the age of 18 were obtained during subject recruitment. Eligibility criteria of subjects are provided in greater detail in previous publications ( Ezenwa et al, 2014 ; Dyal et al, 2020 ). All subjects included in this study (N = 131) identified themselves as African Americans.…”

Section: Methodsmentioning

confidence: 99%

Candidate gene association study suggests potential role of dopamine beta-hydroxylase in pain heterogeneity in sickle cell disease

et al. 2023

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Introduction: Pain is a lifelong companion of individuals with sickle cell disease (SCD) and has a severe impact on their quality of life. Both acute crisis pain and chronic non-crisis pain exhibit high variability between individuals, making it difficult to effectively manage sickle cell-related pain. We investigated the role of dopamine beta-hydroxylase (DBH) gene polymorphisms on pain variability in SCD. DBH is a key enzyme in the catecholamine biosynthesis pathway that catalyzes the conversion of dopamine to norepinephrine, both of which are known mediators of pain and pain-related behaviors.Methods: Acute crisis pain-related utilization and non-crisis chronic pain scores of 131 African Americans with SCD were obtained.Results and discussion: Association analyses revealed that the T allele of upstream variant rs1611115 and downstream variant rs129882 correlated with higher severity of chronic pain in an additive model. On the other hand, the A allele of missense variant rs5324 associated with lower risk of both acute crisis pain and chronic pain. Similarly, the C allele of intronic variant rs2797849 was associated with lower incidence of acute crisis pain in the additive model. In addition, tissue-specific eQTL revealed that the T allele of rs1611115 correlated with decreased expression of DBH in the frontal cortex and anterior cingulate cortex (GTEx), and decreased expression of DBH-AS1 in blood (eQTLGen). Bioinformatic approaches predicted that rs1611115 may be altering a transcription factor binding site, thereby, contributing to its potential effect. Taken together, findings from this study suggest that potential functional polymorphisms of DBH may modulate pain perception in SCD.

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“…An important retention strategy is to engage the patients as active partners in the study by explaining the importance of their contribution. We have built trusting relationships with the clinic staff and patient panel, which facilitated the success of our feasibility study and an 18-month longitudinal study (1R01HL124945) that have resulted in several publications [50][51][52][53][54][55]. Other important retention and adherence strategies include contacting participants for data collection and updating contact information every month.…”

Section: Study Retention and Adherencementioning

confidence: 99%

A Stress and Pain Self-management mHealth App for Adult Outpatients With Sickle Cell Disease: Protocol for a Randomized Controlled Study

Ezenwa¹,

Yao²,

Mandernach³

et al. 2022

JMIR Res Protoc

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Background This paper describes the research protocol for a randomized controlled trial of a self-management intervention for adults diagnosed with sickle cell disease (SCD). People living with SCD experience lifelong recurrent episodes of acute and chronic pain, which are exacerbated by stress. Objective This study aims to decrease stress and improve SCD pain control with reduced opioid use through an intervention with self-management relaxation exercises, named You Cope, We Support (YCWS). Building on our previous findings from formative studies, this study is designed to test the efficacy of YCWS on stress intensity, pain intensity, and opioid use in adults with SCD. Methods A randomized controlled trial of the short-term (8 weeks) and long-term (6 months) effects of YCWS on stress, pain, and opioid use will be conducted with 170 adults with SCD. Patients will be randomized based on 1:1 ratio (stratified on pain intensity [≤5 or >5]) to be either in the experimental (self-monitoring of outcomes, alerts or reminders, and use of YCWS [relaxation and distraction exercises and support]) or control (self-monitoring of outcomes and alerts or reminders) group. Patients will be asked to report outcomes daily. During weeks 1 to 8, patients in both groups will receive system-generated alerts or reminders via phone call, text, or email to facilitate data entry (both groups) and intervention use support (experimental). If the participant does not enter data after 24 hours, the study support staff will contact them for data entry troubleshooting (both groups) and YCWS use (experimental). We will time stamp and track patients’ web-based activities to understand the study context and conduct exit interviews on the acceptability of system-generated and staff support. This study was approved by our institutional review board. Results This study was funded by the National Institute of Nursing Research of the National Institutes of Health in 2020. The study began in March 2021 and will be completed in June 2025. As of April 2022, we have enrolled 45.9% (78/170) of patients. We will analyze the data using mixed effects regression models (short term and long term) to account for the repeated measurements over time and use machine learning to construct and evaluate prediction models. Owing to the COVID-19 pandemic, the study was modified to allow for mail-in consent process, internet-based consent process via email or Zoom videoconference, devices delivered by FedEx, and training via Zoom videoconference. Conclusions We expect the intervention group to report reductions in pain intensity (primary outcome; 0-10 scale) and in stress intensity (0-10 scale) and opioid use (Wisepill event medication monitoring system), which are secondary outcomes. Our study will contribute to advancing the use of nonopioid therapy such as guided relaxation and distraction techniques for managing SCD pain. Trial Registration ClinicalTrials.gov NCT04484272; https://clinicaltrials.gov/ct2/show/NCT04484272 International Registered Report Identifier (IRRID) PRR1-10.2196/33818

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A QST‐based Pain Phenotype in Adults With Sickle Cell Disease: Sensitivity and Specificity of Quality Descriptors

Cited by 12 publications

References 42 publications

Assessing neuropathic pain in sickle cell disease: How useful is quantitative sensory testing?

Assessing neuropathic pain in sickle cell disease: How useful is quantitative sensory testing?

Candidate gene association study suggests potential role of dopamine beta-hydroxylase in pain heterogeneity in sickle cell disease

A Stress and Pain Self-management mHealth App for Adult Outpatients With Sickle Cell Disease: Protocol for a Randomized Controlled Study

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