Preliminary evaluation of the clinical implementation of cognitive-behavioral therapy for chronic pain management in pediatric sickle cell disease

BACKGROUND Sickle cell disease (SCD) is a genetic disorder of red blood cells that results in acute and chronic health problems, including painful syndromes. Opioid analgesia is the mainstay of moderate to severe pain management in SCD, although adjunctive psychosocial approaches such as cognitive behavioral therapy (CBT) are increasingly incorporated. CBT has been used in populations of various ages to address a wide range of issues, such as mood disorders and chronic pain. It is unclear if effective CBT reduces the use of opioids to manage pain in pediatric SCD. OBJECTIVE The aim of this study is to evaluate the association between CBT and decreased opioid use in children with SCD. METHODS In this systematic review protocol, we describe our approach to applying predetermined eligibility criteria to searches of PubMed (including Medline), Embase, Cochrane, Web of Science, and PsycINFO databases, as well as Google Scholar and grey literature. In particular, we will use keywords to search for English-language studies of individuals with SCD aged 21 years old and younger published before November 2018. Keywords will allow us to assess for the primary outcome—total use of opioid medications—and the secondary outcomes—pain intensity and emotional functioning—during pain management using a combined opioid and CBT approach, opioids alone, or CBT alone. The review team will use standardized abstraction forms to review articles at the title, abstract, and full-text levels. Finally, reviewers will assess the risk for bias, quality of evidence, and adequacy of data for quantitative versus qualitative synthesis. If meta-analysis is deemed inappropriate, a narrative review will be conducted. RESULTS We will report a summary of findings across studies that meet eligibility criteria to compare the extent to which adjunctive CBT is associated with decreased opioid use among children with SCD. CONCLUSIONS This systematic review will present the current state of the evidence on CBT and opioid use in pediatric SCD, which may inform clinical practice and health policy to support optimized pain management. INTERNATIONAL REGISTERED REPOR PRR1-10.2196/13211

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Parent Perspectives on Pain Management, Coping, and Family Functioning in Pediatric Sickle Cell Disease

Clinical Pediatrics ◽

10.1177/0009922806293985 ◽

2007 ◽

Vol 46 (4) ◽

pp. 311-319 ◽

Cited By ~ 29

Author(s):

Monica J. Mitchell ◽

Kathleen Lemanek ◽

Tonya M. Palermo ◽

Lori E. Crosby ◽

Alisha Nichols ◽

...

Keyword(s):

Pain Management ◽

Sickle Cell Disease ◽

Family Functioning ◽

Sickle Cell ◽

Parent Perspectives ◽

Cell Disease ◽

Pediatric Sickle Cell Disease

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American Society of Hematology 2020 guidelines for sickle cell disease: management of acute and chronic pain

Blood Advances ◽

10.1182/bloodadvances.2020001851 ◽

2020 ◽

Vol 4 (12) ◽

pp. 2656-2701 ◽

Cited By ~ 5

Author(s):

Amanda M. Brandow ◽

C. Patrick Carroll ◽

Susan Creary ◽

Ronisha Edwards-Elliott ◽

Jeffrey Glassberg ◽

...

Keyword(s):

Chronic Pain ◽

Pain Management ◽

Sickle Cell Disease ◽

Sickle Cell ◽

Practice Research ◽

Management Approach ◽

Evidence Based ◽

Cell Disease ◽

Targeted Interventions ◽

American Society

Background: The management of acute and chronic pain for individuals living with sickle cell disease (SCD) is a clinical challenge. This reflects the paucity of clinical SCD pain research and limited understanding of the complex biological differences between acute and chronic pain. These issues collectively create barriers to effective, targeted interventions. Optimal pain management requires interdisciplinary care. Objective: These evidence-based guidelines developed by the American Society of Hematology (ASH) are intended to support patients, clinicians, and other health care professionals in pain management decisions for children and adults with SCD. Methods: ASH formed a multidisciplinary panel, including 2 patient representatives, that was thoroughly vetted to minimize bias from conflicts of interest. The Mayo Evidence-Based Practice Research Program supported the guideline development process, including updating or performing systematic reviews. Clinical questions and outcomes were prioritized according to importance for clinicians and patients. The Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach was used, including GRADE evidence-to-decision frameworks, to assess evidence and make recommendations, which were subject to public comment. Results: The panel reached consensus on 18 recommendations specific to acute and chronic pain. The recommendations reflect a broad pain management approach, encompassing pharmacological and nonpharmacological interventions and analgesic delivery. Conclusions: Because of low-certainty evidence and closely balanced benefits and harms, most recommendations are conditional. Patient preferences should drive clinical decisions. Policymaking, including that by payers, will require substantial debate and input from stakeholders. Randomized controlled trials and comparative-effectiveness studies are needed for chronic opioid therapy, nonopioid therapies, and nonpharmacological interventions.

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The Experience of Loss in Patients Suffering from Chronic Pain Attending a Pain Management Group Based on Cognitive-Behavioral Therapy

Pain Management Nursing ◽

10.1016/j.pmn.2012.04.004 ◽

2014 ◽

Vol 15 (1) ◽

pp. 12-21 ◽

Cited By ~ 8

Author(s):

Cecilie Haraldseid ◽

Elin Dysvik ◽

Bodil Furnes

Keyword(s):

Chronic Pain ◽

Pain Management ◽

Cognitive Behavioral Therapy ◽

Behavioral Therapy ◽

Cognitive Behavioral ◽

Management Group

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Outcome of Transitioning Pediatric Patients with Sickle Cell Disease to Adult Programs.

Blood ◽

10.1182/blood.v104.11.3743.3743 ◽

2004 ◽

Vol 104 (11) ◽

pp. 3743-3743 ◽

Cited By ~ 3

Author(s):

Samir K. Ballas ◽

Carlton Dampier

Keyword(s):

Chronic Pain ◽

Young Adults ◽

Pain Management ◽

Sickle Cell Disease ◽

Medical Care ◽

Sickle Cell ◽

Adolescents And Young Adults ◽

Cell Disease ◽

Adult Care ◽

Female Ratio

The transition of medical care of patients with sickle cell disease (SCD) from pediatric to adult providers represents a milestone in their lives. Major concerns among adolescents and young adults about transition include taking responsibility for self, making own decisions, cost of medical care, fear of suboptimal pain management, and reluctance to leave known providers. In this study we present our experience in the process of transition to adult care and its outcome over the last ten years. Adolescents and young adults were given information about the nature of medical care provided by adult internists and hematologists. The sickle cell programs available in the city were described. Moreover, site visits to the hospitals where adult care was to be provided were arranged. During these visits, adolescents and young adults had the chance to meet the hematologist and other potential providers and ask questions, visit the emergency room, the clinic, and the sickle day unit if applicable. Patients were empowered to choose the program to which they wished to be transitioned. During the last 10 years, 90 adolescents and young adults (See Table) with SCD (Sickle Cell Anemia [SS], Hemoglobin SC Disease, and Sickle Thalassemia [ST]) were transitioned to the adult sickle cell program of Thomas Jefferson University. Age of transition varied between 18 and 25 years. Eighteen patients (20%) died. Age at death was 24.9 ± 2.95 years and the male/female ratio was 10:8. Complications of sickle cell disease after transition included leg ulcers, stroke, avascular necrosis, anxiety, depression, and priapism. Nineteen patients (10 males, 9 females) were employed. Twenty-nine (32%) patients developed chronic pain syndrome and its sequelae. Many patients failed to achieve their childhood goals. The data show that a significant number of patients die within 10 years after transition. The quality of life of survivors is suboptimal and drifts into issues of chronic pain management in the adult environment. Identifying these issues may provide predictors that identify children at risk to have undesirable outcomes after transition. Aggressive management and refining the process of transition should improve the outcome after transition. Distribution of the Transitioned Patients SS SC ST Total Male 31 8 4 43 Female 34 8 5 47 Total 65 16 9 90

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Five lessons learned about long-term pain management in adults with sickle cell disease

Hematology ◽

10.1182/asheducation-2017.1.406 ◽

2017 ◽

Vol 2017 (1) ◽

pp. 406-411 ◽

Cited By ~ 4

Author(s):

Joshua J. Field

Keyword(s):

Chronic Pain ◽

Pain Management ◽

Sickle Cell Disease ◽

Sickle Cell ◽

Lessons Learned ◽

Cell Disease ◽

Prescribing Practices ◽

Blood Institute ◽

Pain Syndromes ◽

National Heart Lung

AbstractChronic pain affects one-half of adults with sickle cell disease (SCD). Despite the prevalence of chronic pain, few studies have been performed to determine the best practices for this patient population. Although the pathophysiology of chronic pain in SCD may be different from other chronic pain syndromes, many of the guidelines outlined in the pain literature and elsewhere are applicable; some were consensus-adopted in the 2014 National Heart, Lung, and Blood Institute SCD Guidelines. Recommended practices, such as controlled substance agreements and monitoring of urine, may seem unnecessary or counterproductive to hematologists. After all, SCD is a severe pain disorder with a clear indication for opioids, and mistrust is already a major issue. The problem, however, is not with a particular disease but with the medicines, leading many US states to pass broad legislation in attempts to curb opioid misuse. These regulations and other key tenets of chronic pain management are not meant to deprive adults with SCD of appropriate therapies, and their implementation into hematology clinics should not affect patient-provider relationships. They simply encourage prudent prescribing practices and discourage misuse, and should be seen as an opportunity to more effectively manage our patient’s pain in the safest manner possible. In line with guideline recommendations as well as newer legislation, we present five lessons learned. These lessons form the basis for our model to manage chronic pain in adults with SCD.

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Addressing Sickle Cell Disease Implicit Bias in Internal Medicine Residents

Blood ◽

10.1182/blood-2021-151733 ◽

2021 ◽

Vol 138 (Supplement 1) ◽

pp. 2965-2965

Author(s):

Nabil Abou Baker ◽

Daniela Anderson ◽

Byron Brooks

Keyword(s):

Internal Medicine ◽

Sickle Cell Disease ◽

Cognitive Behavioral Therapy ◽

Behavioral Therapy ◽

Automatic Thoughts ◽

Cell Disease ◽

Individual Level ◽

Implicit Biases ◽

Internal Medicine Residents

Abstract Introduction: Throughout the years, patients with sickle cell disease (SCD) have been subjected to biases and stigmas that have affected their care, which then leads to them experiencing greater pain and a lower quality of life. Literature continues to show that patients suffer from their pain being discounted during hospitalizations. In the previous year, our group showed that our internal medicine residents had negative implicit biases (IB) toward patients with SCD. Frameworks and trainings exist for addressing different aspects of IB; however, none exists to address implicit biases on the individual level. We developed an implicit bias module (SOAR) for residents to complete to help address negative IB toward patients with SCD. Methods: Twenty-three 2 nd and 3 rd year internal medicine residents went through the SOAR module for addressing IB twice. The SOAR framework assisted the residents in self-identification of the IB, observing when the IB occurs, creating an action plan to address the IB, and repeating the steps for maintenance. SOAR framework is heavily based on methods from cognitive behavioral therapy. The SOAR sample case for residents involved a patient with SCD requiring pain medication. Residents were surveyed on their initial forming thoughts, in this case the IB, emotions, and intensity of the IB or emotion before and after going through the module. A 10-point Likert scale (10 = high/1=low) was used to judge intensity of the IB or emotion. Results: Residents had a range of initial thoughts such as: failure, suspicion and opioids, pity and boring admission, chronic pain and dread of confrontation, and frustration, with an average belief of 7/10 in that thought. Their emotions initially included: frustration, sadness, shame, guilt, worry, and pessimism with an average belief of 5.5/10 in that emotion. After completing SOAR, the average belief in the initial IB decreased to 4.3/10. Emotions changed to feelings of regret and sadness with an average intensity of 6/10. 75% of the residents found the lecture helpful, 92% stated they believed it is important to address implicit biases, and 100% stated that they would use SOAR framework to address their own negative implicit biases. Discussion: The IB module is based on cognitive behavioral therapy techniques and uses concepts typically reserved for automatic thoughts such as in patients with depression or anxiety. We substituted automatic thoughts for IB. It is important to address negative IB that affect our patients and their care. We have attempted in this module to address IB on a personal or individual level for residents. The SOAR criteria helped focus on improving conscious efforts to overcome IB. This training is not enough for addressing all the faults in the medical system that perpetuates biases and health inequities toward patients with SCD or any other medical condition. It can be used to supplement other methods such as education about influences and patient outcomes, increasing awareness, and making systemic changes. Limitations in this study include voluntary participation in the survey during the module leading to a different number of respondents answering each question as well as being underpowered. Conclusion: Individual or personal strategies can be used to effectively address implicit biases we hold. Addressing implicit biases may help decrease the negative impact these biases have on patients and improve quality of care for patients with SCD. Disclosures No relevant conflicts of interest to declare.

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Patient-Centered eHealth Interventions for Children, Adolescents, and Adults With Sickle Cell Disease: Systematic Review (Preprint)

10.2196/preprints.10940 ◽

2018 ◽

Author(s):

Sherif M Badawy ◽

Robert M Cronin ◽

Jane Hankins ◽

Lori Crosby ◽

Michael DeBaun ◽

...

Keyword(s):

Systematic Review ◽

Sickle Cell Disease ◽

Cognitive Behavioral Therapy ◽

Sickle Cell ◽

Behavioral Therapy ◽

Cognitive Behavioral ◽

Self Management ◽

Original Research ◽

Cell Disease ◽

Blood Disorder

BACKGROUND Sickle cell disease is an inherited blood disorder that affects over 100,000 Americans. Sickle cell disease–related complications lead to significant morbidity and early death. Evidence supporting the feasibility, acceptability, and efficacy of self-management electronic health (eHealth) interventions in chronic diseases is growing; however, the evidence is unclear in sickle cell disease. OBJECTIVE We systematically evaluated the most recent evidence in the literature to (1) review the different types of technological tools used for self-management of sickle cell disease, (2) discover and describe what self-management activities these tools were used for, and (3) assess the efficacy of these technologies in self-management. METHODS We reviewed literature published between 1995 and 2016 with no language limits. We searched MEDLINE, EMBASE, CINAHL, PsycINFO, and other sources. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Two independent reviewers screened titles and abstracts, assessed full-text articles, and extracted data from articles that met inclusion criteria. Eligible studies were original research articles that included texting, mobile phone–based apps, or other eHealth interventions designed to improve self-management in pediatric and adult patients with sickle cell disease. RESULTS Of 1680 citations, 16 articles met all predefined criteria with a total of 747 study participants. Interventions were text messaging (4/16, 25%), native mobile apps (3/16, 19%), Web-based apps (5/16, 31%), mobile directly observed therapy (2/16, 13%), internet-delivered cognitive behavioral therapy (2/16, 13%), electronic pill bottle (1/16, 6%), or interactive gamification (2/16, 13%). Interventions targeted monitoring or improvement of medication adherence (5/16, 31%); self-management, pain reporting, and symptom reporting (7/16, 44%); stress, coping, sleep, and daily activities reporting (4/16, 25%); cognitive training for memory (1/16, 6%); sickle cell disease and reproductive health knowledge (5/16, 31%); cognitive behavioral therapy (2/16, 13%); and guided relaxation interventions (1/16, 6%). Most studies (11/16, 69%) included older children or adolescents (mean or median age 10-17 years; 11/16, 69%) and 5 included young adults (≥18 years old) (5/16, 31%). Sample size ranged from 11 to 236, with a median of 21 per study: <20 in 6 (38%), ≥20 to <50 in 6 (38%), and >50 participants in 4 studies (25%). Most reported improvement in self-management–related outcomes (15/16, 94%), as well as high satisfaction and acceptability of different study interventions (10/16, 63%). CONCLUSIONS Our systematic review identified eHealth interventions measuring a variety of outcomes, which showed improvement in multiple components of self-management of sickle cell disease. Despite the promising feasibility and acceptability of eHealth interventions in improving self-management of sickle cell disease, the evidence overall is modest. Future eHealth intervention studies are needed to evaluate their efficacy, effectiveness, and cost effectiveness in promoting self-management in patients with sickle cell disease using rigorous methods and theoretical frameworks with clearly defined clinical outcomes.

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