scholarly journals Parent Perspectives on Pain Management in Preschool-Age Children With Sickle Cell Disease

2017 ◽  
Vol 35 (1) ◽  
pp. 16-24 ◽  
Author(s):  
Kelsey Smith ◽  
Laura Reinman ◽  
Jeffrey Schatz ◽  
Carla W. Roberts

Pain episodes occur for many preschoolers with sickle cell disease (SCD), but little is known about parent perceptions of managing pain episodes in young children. We surveyed parents of young children with SCD who had managed pain episodes in the past year to assess their management and satisfaction with their strategies, challenges of pain management, and interest in additional education. Parents were recruited from health maintenance visits at a SCD specialty clinic. Forty-two of 51 parents (82%) of 2- to-6-year-olds reported managing pain over the past year. Parents who had managed pain primarily reported using medications. These parents reported at least moderate satisfaction with current management strategies and resources. At least one-third of parents found each facet of pain management queried as at least somewhat challenging. Identifying when their child was in pain, encouraging functional activities, and managing irritable behavior were reported as most challenging. Parents of young children with SCD reported interest in additional pain management education, which could promote better parent and child coping skills.

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 4846-4846
Author(s):  
Sarah Leonard ◽  
Lindsay Cortright ◽  
Dmitry Tumin ◽  
Lora Joyner ◽  
Sruthipriya Sridhar

Introduction: Individuals with sickle cell disease (SCD) experience both acute vaso-occlusive pain (VOC) and chronic pain, both primarily treated with opioids. However, opioids only address the sensory dimension of pain and repeated use of opioids can cause short and long-term side effects such as respiratory system depression, increased risk of cardiovascular events, and hyperalgesia. Non-pharmacologic approaches to the management of acute and chronic SCD pain, such as cognitive behavioral therapy, biofeedback, acupuncture, hypnosis, and megavitamins, have shown positive effects for pain management and may reduce opioid use. Among non-pharmacologic pain management methods, aquatic therapy has been underutilized and understudied in patients with SCD, despite showing benefits for pain management and quality of life in adults with musculoskeletal conditions. At Vidant Medical Center, aquatic therapy has been introduced for patients with SCD in 2015 and has been increasingly used since then. To describe the use of aquatic therapy and outcomes in pediatric patients with SCD, we retrospectively evaluated the use of this therapy at Vidant Medical Center among children hospitalized for acute VOC pain. Methods: The study was approved by the Institutional Review Board at East Carolina University. Children with SCD between 7-18 years of age at the time of admission for acute VOC pain between the years 2015-2018 were included in the analysis. During the review period, orders for aquatic therapy were placed at the provider's discretion. Our primary outcome was utilization of aquatic therapy during a given hospitalization, determined by retrospective query of the electronic medical record (EMR). Secondary outcomes include length of stay and time to readmission for VOC. Covariates were assessed at the time of the index admission included age, sex, and insurance coverage. Mixed-effects logistic or Poisson regression models were fitted to account for multiple hospitalizations per patient. Results: The analysis included 316 hospitalizations of 87 patients (48% female; median age at the earliest hospitalization, 11 years). The median duration of hospital admissions was 4 days (interquartile range [IQR]: 3, 7). Aquatic therapy was used in 38% of admissions, with a trend of increasing use during the study period (Figure 1). On multivariable logistic regression analysis of aquatic use during a given admission, characteristics associated with greater likelihood of aquatic therapy use included older age and more recent year of admission. Aquatic therapy was associated with 69% longer hospital stays, although this may be related to availability of aquatic therapy services. Among 52 patients with multiple admissions, use of aquatic therapy during a given admission was associated with 26% more days between hospitalizations (incidence rate ratio = 1.26; 95% CI: 1.21, 1.31; p=<0.001). Conclusion: Research into the use of non-pharmacologic pain management strategies for sickle cell disease has recently increased in order to better address the multidimensional aspects of pain. Of these management strategies, aquatic therapy has been very underutilized and under researched. Analysis of the utilization of aquatic therapy in our institution showed improved use over the last 3 years as well as increased duration between hospitalizations after the use of aquatic therapy. These positive results point towards the need for more research into other outcome measures derived from the use of aquatic therapy in pain management of pediatric SCD patients. Figure 1 Disclosures No relevant conflicts of interest to declare.


2019 ◽  
Vol 8 (12) ◽  
pp. 2136
Author(s):  
Nadirah El-Amin ◽  
Paul Nietert ◽  
Julie Kanter

Vaso-occlusive pain crises are the hallmark of sickle cell disease (SCD) and the primary reason for health care utilization. Both national and international guidelines recommend aggressive intravenous opioids, intravenous fluids and anti-inflammatory therapy as the mainstay of treatment for acute SCD pain. However, many vaso-occlusive crises are managed at home with oral medication and supportive care. There are no guidelines on home medication management of SCD-related pain, likely due to the lack of well-defined endpoints for acute events and the lack of funding for already approved pain medications. Amplifying this issue is the growing concern for opioid abuse and misuse in the United States (US) and internationally. This study aimed to evaluate differences in opioid prescribing practices among providers treating SCD in the US and internationally. A survey was disseminated electronically to known providers using a combination of purposive and snowball sampling strategy. There were 127 responses and 17 countries represented. US providers were more likely to prescribe opioids (p < 0.001) and were more likely to be “very comfortable” prescribing opioids than non-US prescribers (p < 0.001). US providers also tended to prescribe more tablets per patient of stronger opioids than non-US physicians. US physicians were more likely to be concerned that patients were abusing opioids than non-US physicians (32% vs. 27%, p < 0.05). There are significant variations in how different parts of the world manage pain in the outpatient setting for SCD. Identifying optimal home pain management strategies is necessary to improve care and long-term outcomes in SCD.


Author(s):  
Shannon Phillips ◽  
Julie Kanter ◽  
Martina Mueller ◽  
Amy Gulledge ◽  
Kenneth Ruggiero ◽  
...  

Abstract Sickle cell disease (SCD) is an inherited hemoglobinopathy that leads to blood vessel occlusion and multiorgan complications, including pain, that may be experienced daily. Symptom management often begins at home, and tools are needed to support self-management strategies that can be implemented by children with SCD and families. The purpose of this study was to assess the feasibility of the mHealth self-management intervention (application) Voice Crisis Alert V2 for children with SCD and families. Feasibility assessment was guided by the Reach, Efficacy, Adoption, Implementation, and Maintenance framework. Data were collected with 60 dyads (children with SCD/caregivers) at four time points. Self-management data were collected via application use, and postintervention interviews were conducted. Analyses included descriptive statistics and constant comparison with directed content analysis. Recruitment was completed in 28 weeks, with 82% retention at end-of-intervention. Mobile Application Rating Scale scores and interview data indicated high satisfaction. From baseline to mid-intervention, 94% of dyads used the application (75% of total use); 45% used the application from mid-intervention to the end-of-intervention. Dyads made 2,384 actions in the application; the most commonly used features were recording health history and recording and tracking symptoms. Few reported issues with the application; most issues occurred early in the study and were corrected. After the intervention period was completed, 37% continued to use the application. Feasibility was confirmed by meeting recruitment and retention goals, high adoption of the application, and high reported satisfaction with the application. Challenges with sustained use were encountered, and areas for improvement were identified.


2007 ◽  
Vol 46 (4) ◽  
pp. 311-319 ◽  
Author(s):  
Monica J. Mitchell ◽  
Kathleen Lemanek ◽  
Tonya M. Palermo ◽  
Lori E. Crosby ◽  
Alisha Nichols ◽  
...  

Hematology ◽  
2013 ◽  
Vol 2013 (1) ◽  
pp. 362-369 ◽  
Author(s):  
Deepa Manwani ◽  
Paul S. Frenette

Abstract Recurrent and unpredictable episodes of vaso-occlusion are the hallmark of sickle cell disease. Symptomatic management and prevention of these events using the fetal hemoglobin–reactivating agent hydroxyurea are currently the mainstay of treatment. Discoveries over the past 2 decades have highlighted the important contributions of various cellular and soluble participants in the vaso-occlusive cascade. The role of these elements and the opportunities for therapeutic intervention are summarized in this review.


PEDIATRICS ◽  
1991 ◽  
Vol 87 (4) ◽  
pp. 563-565
Author(s):  
HOWARD BAUCHNER

During the past decade certain types of pain in children have been the subject of much research and discussion. The pain associated with cancer, sickle cell disease, and the preoperative and post-operative periods have all been extensively studied and reviewed.1-4 Less information is available about acute pain inflicted in emergency rooms. Children commonly undergo procedures such as venipuncture, intravenous cannulation, lumbar puncture, and manipulation of fractures in emergency rooms without the benefit of any analgesia. What techniques are available to reduce the pain and anxiety that children feel when they undergo procedures? Traditionally, physicians have tried to reduce pain by using pharmacological agents.


Hematology ◽  
2013 ◽  
Vol 2013 (1) ◽  
pp. 433-438 ◽  
Author(s):  
Jean L. Raphael ◽  
Suzette O. Oyeku

Pain is the most common cause for hospitalization and acute morbidity in sickle cell disease (SCD). The consequences of SCD-related pain are substantial, affecting both the individual and the health care system. The emergence of the patient-centered medical home (PCMH) provides new opportunities to align efforts to improve SCD management with innovative and potentially cost-effective models of patient-centered care. The Department of Health and Human Services has designated SCD as a priority area with emphasis on creating PCMHs for affected patients. The question for patients, clinicians, scientists, and policy-makers is how the PCMH can be designed to address pain, the hallmark feature of SCD. This article provides a framework of pain management within the PCMH model. We present an overview of pain and pain management in SCD, gaps in pain management, and current care models used by patients and discuss core PCMH concepts and multidisciplinary team–based PCMH care strategies for SCD pain management.


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