Challenges and Resilience in the Lives of Adults with Sickle Cell Disease

Williams-Gray, Brenda; Senreich, Evan

doi:10.1080/19371918.2014.938396

Cited by 7 publications

(8 citation statements)

References 45 publications

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“…The chronicity and rapidity of these pain episodes reduce sickle-cell disease patients’ quality of life 4,6,9. Because sickle-cell disease predominantly affects minority populations, the manifestations of the disease exacerbate the challenges faced by communities with high proportions of minority residents 10. This motivated us to develop a protocol of care in an effort to improve the medical care provided to the sickle-cell disease population at our institution.…”

Section: Discussionmentioning

confidence: 99%

A Patient-Centered Emergency Department Management Strategy for Sickle-Cell Disease Super-Utilizers

Simpson

Hahn

Powel

et al. 2017

WestJEM

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IntroductionA subpopulation of sickle-cell disease patients, termed super-utilizers, presents frequently to emergency departments (EDs) for vaso-occlusive events and may consume disproportionate resources without broader health benefit. To address the healthcare needs of this vulnerable patient population, we piloted a multidisciplinary intervention seeking to create and use individualized patient care plans that alter utilization through coordinated care. Our goals were to assess feasibility primarily, and to assess resource use secondarily.MethodsWe evaluated the effects of a single-site interventional study targeted at a population of adult sickle-cell disease super-utilizers using a pre- and post-implementation design. The pre-intervention period was 06/01/13 to 12/31/13 (seven months) and the post-intervention period was 01/01/14 to 02/28/15 (14 months). Our approach included patient-specific best practice advisories (BPA); an ED management protocol; and formation of a “medical home” for these patients.ResultsFor 10 subjects targeted initially we developed and implemented coordinated care plans; after deployment, we observed a tendency toward reduction in ED and inpatient utilization across all measured indices. Between the annualized pre- and post-implementation periods we found the following: ED visits decreased by 16.5 visits/pt-yr (95% confidence interval [CI] [−1.32–34.2]); ED length of state (LOS) decreased by 115.3 hours/pt-yr (95% CI [−82.9–313.5]); in-patient admissions decreased by 4.20 admissions/pt-yr (95% CI [−1.73–10.1]); in-patient LOS decreased by 35.8 hours/pt-yr (95% CI [−74.9–146.7]); and visits where the patient left before treatment were reduced by an annualized total of 13.7 visits. We observed no patient mortality in our 10 subjects, and no patient required admission to the intensive care unit 72 hours following discharge.ConclusionThis effort suggests that a targeted approach is both feasible and potentially effective, laying a foundation for broader study.

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Section: Discussionmentioning

confidence: 99%

A Patient-Centered Emergency Department Management Strategy for Sickle-Cell Disease Super-Utilizers

Simpson

Hahn

Powel

et al. 2017

WestJEM

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“…Abnormal hemoglobin impedes the production of red blood cells in SCD. This causes the normally round red blood cell to become elongated and assume the shape of a crescent [4], which results in the decreased flow of red blood cells through the blood vessels to various parts of the body. Over time, this will lead to painful sickle cell crises, anemia, infections, and multiple organ damage [5].…”

Section: Introductionmentioning

confidence: 99%

Sickle Cell Disease in Children: An Exploration of Family Resilience through the Experiences of Family Caregivers

Nwanonyiri¹,

Monetti²,

Boyd-Jackson³

2019

OJN

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Background: Sickle cell disease (SCD) is a chronic and potentially life-threatening genetic blood disorder with childhood onset. Caring for children with SCD can precipitate greater than average time demands, medical costs, employment constraints, and childcare challenges. Research has shown that family resilience is a key construct capable of enhancing family health and well-being, as well as neutralizing the burden of caring for an ill child. Aim: Applying the Family Resilience Model, this qualitative study involved exploring the phenomenon of family resilience through the perceptions and lived experiences of family caregivers of children with SCD. Methods: 10 self-identified primary SCD caregivers were recruited with the help of the Sickle Cell Association of New Jersey (SCANJ). Three researches and five open-ended interview questions elicited participants' descriptions of their lived experiences. Results: Using an Interpretive Phenomenological Approach and Donabedian's conceptual model to analyze data, three categories emerged from verbatim transcriptions of interviews: family experiences and caring for a child with SCD (Structure); family strengths (Process); and resilience & adaptation (Outcome). The emergent theme was Key Family Strengths Fosters Family Resilience and Adaptation. Conclusions: Findings from this study offered insight into the diverse experiences of caring for children with SCD in the framework of family resilience. Results can facilitate the enhancement of family resilience and adaptation for future families and in designing care specifically tailored for these family caregivers. Recognizing resilience processes utilized by family caregivers of children with SCD is important for future research and to render support by healthcare practitioners.

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“…51 Unfortunately, patients with SCD have been misclassified as drug-seekers by providers who are not familiar with this disease and the characteristics of the pain symptoms these patients experience. 23,24 Because recent guidelines restricting opioid use could negatively affect opioid access among this population, the CDC and the Centers for Medicare & Medicaid Services recently acknowledged that pain management for patients with SCD, as well as those with cancer, require special consideration to ensure that patients have access to clinically appropriate opioid therapy. 25,52 Along with these efforts, the strategy for managing opioid use among this population should focus more on reducing pain episodes and complications, rather than on restricting opioid use.…”

Section: Discussionmentioning

confidence: 99%

“…20,21 Although studies have reported that the risks of developing dependence and addiction to opioids are very low among this population, 22 patients with SCD have been misclassified as drug seekers by providers, especially those who are not familiar with this disease, because of their chronic need for narcotic medications during painful events. 23,24 Patients have reported that the enhanced restriction on prescribing opioids, such as the recent guideline published by the Centers for Disease Control and Prevention (CDC), following the current opioid epidemic, further increases the difficulty in using opioids. 20 To address this issue, the American Society of Hematology and other organizations requested that the CDC clearly acknowledge that special consideration is required for the pain management of patients with SCD, as well as those with cancer, in order to ensure appropriate access to opioid therapy.…”

Section: What This Study Addsmentioning

confidence: 99%

The association between hydroxyurea adherence and opioid utilization among Texas Medicaid enrollees with sickle cell disease

Kang

Barner

2020

JMCP

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BACKGROUND: Individuals with sickle cell disease (SCD) suffer from recurrent catastrophic pain crises that are often managed by opioid analgesics. Being adherent to hydroxyurea has been associated with decreased health care resource use for pain; however, evidence of its association with opioid use is limited. OBJECTIVE:To determine if adherence to hydroxyurea is associated with opioid use among patients with SCD. METHODS: This retrospective study usedTexas Medicaid data from September 1, 2011, to August 31, 2016 (study period). The index date was the date of hydroxyurea initiation. Patients who were aged 2-63 years at the index date, had ≥ 1 inpatient or ≥ 2 outpatient SCD diagnoses during the study period, had ≥ 1 hydroxyurea prescription during the identification period (September 1, 2011-August 31, 2015, had no diagnosis of other indications for hydroxyurea during the study period, and were continuously enrolled for at least 12 months after the index date were included. Hydroxyurea adherence was measured using medication possession ratio (MPR). The study outcomes (measured 1-year post-index) were ( a) opioid use; (b) number of opioid prescriptions; (c) strong opioid use (morphine, hydromorphone, fentanyl, and methadone); (d) number of strong opioid prescriptions; (e) high-dose opioid use (≥ 50 mg morphine milligram equivalent [MME]); and (f) days supply for opioid prescriptions. Covariates included demographic (age and gender) and clinical (vaso-occlusive crisis [VOC], avascular necrosis, iron overload, acute chest syndrome, and blood transfusion) characteristics. Descriptive, bivariate (chi-square and Wilcoxon-Mann-Whitney tests), multiple logistic regression, and negative binomial regression analyses were performed. RESULTS: 1,146 patients (18.3 [12.3] years) met the inclusion criteria. Of these, 19.6% were adherent to hydroxyurea (defined as What is already known about this subject • Patients with sickle cell disease (SCD) suffer from recurrent catastrophic pain crises, and practice guidelines recommend opioid analgesics for pain management.

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Challenges and Resilience in the Lives of Adults with Sickle Cell Disease

Cited by 7 publications

References 45 publications

A Patient-Centered Emergency Department Management Strategy for Sickle-Cell Disease Super-Utilizers

A Patient-Centered Emergency Department Management Strategy for Sickle-Cell Disease Super-Utilizers

Sickle Cell Disease in Children: An Exploration of Family Resilience through the Experiences of Family Caregivers

The association between hydroxyurea adherence and opioid utilization among Texas Medicaid enrollees with sickle cell disease

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