Supplemental Material for Perceptions of a Self-Management Intervention for Adolescents With Sickle Cell Disease

2021 ◽  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Self Management ◽  
Cell Disease ◽  
Management Intervention

scholarly journals Feasibility of an mHealth self-management intervention for children and adolescents with sickle cell disease and their families

2021 ◽  
Author(s):  
Shannon Phillips ◽  
Julie Kanter ◽  
Martina Mueller ◽  
Amy Gulledge ◽  
Kenneth Ruggiero ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Rating Scale ◽  
Management Strategies ◽  
Self Management ◽  
Cell Disease ◽  
Vessel Occlusion ◽  
Feasibility Assessment ◽  
Management Intervention ◽  
Scale Scores

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.

scholarly journals Perceptions of a self-management intervention for adolescents with sickle cell disease.

2021 ◽  
Author(s):  
Lori E. Crosby ◽  
Naomi E. Joffe ◽  
Katherine M. Kidwell ◽  
Onengiya Harry ◽  
Emily A. McTate ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Self Management ◽  
Cell Disease ◽  
Management Intervention

scholarly journals Implementation of an Educational Intervention to Optimize Self-Management and Transition Readiness in Adolescents with Sickle Cell Disease

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 3536-3536
Author(s):  
Cecelia Calhoun ◽  
Regina Abel ◽  
Hai Anh Pham ◽  
Shomari Thompson ◽  
Allison A King
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Psychosocial Development ◽  
Sexual Development ◽  
Independent Living ◽  
Self Management ◽  
Cell Disease ◽  
Adult Care ◽  
Transition Readiness

Abstract Background: The transition from the pediatric setting to adult care is a challenge for many adolescents with chronic disease. Patients with sickle cell disease (SCD) represent a unique cohort as the timing of psychosocial development of adolescence often coincides with worsening end organ damage. Previously, we used the Adolescent Autonomy Checklist (AAC) modified to include SCD specific tasks that patients with SCD need to practice in order to transition to adult healthcare and independent living. This study sought to use the AAC to measure the effects of skill based educational handouts on improving self-management and transition readiness in adolescents with SCD. Methods: This was a single center, retrospective study approved by the Washington University Institutional Review Board. Inclusion criteria were patients with SCD, age 13-21 years, and completion of pre and post assessments. As standard care, patients from a pediatric hematology clinic completed the AAC-SCD. The AAC-SCD assesses skill level in twelve domains (Table). The tool includes 100 items, and users check "can do already" or "needs practice" for each item. After review with the coordinator, participants were given skill-based handouts based on up to five noted deficits. Patients completed the AAC-SCD at the subsequent clinic visit. In addition to baseline and follow up AAC-SCD data, medical and demographic data were collected via chart abstraction. All data were entered into SPSS for statistical analysis, including descriptives, paired sample T-tests, and bivariate Pearson's correlations. Results: A total of 61 patients completed baseline and follow up. Of those participants, 49.2% were female. The mean age was 15.4 (+ 2.2) years. The genotypic distribution was as follows: 67.2% HbSS, 19.7% HbSC, 3.3% HbS-beta-thal+ and 9.8% HbS-beta-thal0. The majority of patients received healthcare coverage via Medicaid (52.5%), private insurance (45.6%) and 1.6% had no insurance coverage. Twenty-five patients (42.0 %) had a history of stroke or silent cerebral infarct and 34 (55.7%) were currently taking or were previously prescribed hydroxyurea. Formal academic support (IEP or 504 Plan) was reported for 20 (32.8%) of patients. At baseline, patients needed the most help with skills in the kitchen, housekeeping, personal care and leisure. Statistically significant improvements (p< 0.05) occurred in skills related to laundry, housekeeping, healthcare, sexual development and living arrangements. Modest sized and statistically significant correlation between the receipt of the educational handouts and decreased number of items marked "needs help" occurred in the areas of money management (r=-0.27, p=0.044), vocational skills (r=-0.27, p=0.046;) and laundry (r=0.32, p=0.015). A post hoc analysis by age groups 13-15 (n= 34),16-18 (n=24) and 19-21 (n=3) showed a decreased amount of items marked "needs help" in the areas of sexual development for both 13-15 year olds (r=0.42, p=0.024) and 16-18 year olds (r=0.93, p=0.001) as well. Conclusion: Transition skills improved over time among adolescents with SCD. While we cannot say for certain if gains in knowledge occur with age as development progresses or if a formal transition program can be credited, providing educational materials on transition related skills within a clinic setting was associated with significant improvements in three of the domains. Our preliminary data offers insight into what skill deficits may be most amenable to educational interventions based on age group. As is the case with medical management, the development of a multimodal intervention is needed to prepare adolescents with SCD to transition to adult care and independent living. Clinic based education is a simple intervention that could be one component of future approaches to transition. Disclosures No relevant conflicts of interest to declare.

scholarly journals Self‐Management Recommendations for Sickle Cell Disease: A Content Analysis of Websites

2020 ◽  
Author(s):  
Druye A Andrews ◽  
Nelson Katherine ◽  
Robinson Brian
Keyword(s):  
Content Analysis ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Qualitative Content Analysis ◽  
Preventive Health ◽  
Self Management ◽  
Cell Disease ◽  
Self Monitoring ◽  
Management Actions ◽  
Management Recommendations

This paper reports on the findings of a study designed to establish website-based self-management recommendations for sickle cell disease. Google and Yahoo search engines were used to search the World-Wide-Web. Purposive sampling was utilized to select 28 websites that met the inclusion criteria. Data were manually collected from health education materials and subjected to qualitative content analysis. Self-management was conceptualized as actions involving preventive health, self-monitoring, self-diagnosing, and self-treatment. The results show that the websites recommend more self-management actions for preventive health and self-treatment than for self-monitoring and self-diagnosis. Frequent oral fluid intake, limitation of overactivity, eating a healthy diet, avoiding extreme temperatures, and infections were the commonest preventive health recommendations. Daily pain monitoring and general bodily inspections were the most frequent self-monitoring recommendations. Commonly cited self-diagnostic indicators were fever, persistent pain, enlarged spleen, and leg ulcers. The use of analgesics and non-pharmacological measures were regularly cited for self-treatment. Most recommendations were assessed as clinically safe as they align with standards for sickle cell management. Nurses and other professionals should teach patients how to assess the credibility of websites. This article is protected by copyright. All rights reserved.

A Qualitative Analysis of Best Self-management Practices: Sickle Cell Disease

2010 ◽  
Vol 102 (11) ◽  
pp. 1033-1041 ◽  
Author(s):  
Paula Tanabe ◽  
Jerlym Porter ◽  
Melissa Creary ◽  
Eric Kirkwood ◽  
Shirley Miller ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Qualitative Analysis ◽  
Sickle Cell ◽  
Management Practices ◽  
Self Management ◽  
Cell Disease

Early Identification of Barriers and Facilitators to Self-Management Behaviors in Pediatric Patients With Sickle Cell Disease to Minimize Hematopoietic Cell Transplantation Complications

2018 ◽  
Vol 35 (3) ◽  
pp. 199-209 ◽  
Author(s):  
Ginny L. Schulz ◽  
Rebecca H. Foster ◽  
Valerie Kennedy Lang ◽  
Alison Towerman ◽  
Shalini Shenoy ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Cell Transplantation ◽  
Sickle Cell ◽  
Pediatric Patients ◽  
Hematopoietic Cell Transplantation ◽  
Hematopoietic Cell ◽  
Barriers And Facilitators ◽  
Self Management ◽  
Cell Disease ◽  
Management Behaviors

Hematopoietic cell transplantation (HCT) is an elective, curative treatment option for patients with sickle cell disease (SCD). Transplant requires extensive self-management behaviors to be successful. The purpose of this study was to describe potential barriers and facilitators to self-management in a group of pediatric patients with SCD prior to HCT and their medical outcomes post-HCT. A multiple case study approach was used to describe 4 pairs of transplant recipients grouped by age, donor type, and donor source. Each pair included a case with minimal and increased post-HCT complications. Complications included readmissions, graft-versus-host disease, systemic infections, and survival in the first year post-HCT. Variables were retrospectively collected and content analyzed to identify barriers and facilitators within and across pairs using existing self-management frameworks. While higher risk transplants experienced more complications, 3 of the 4 cases with increased complications had a larger number of modifiable barriers identified compared with those experiencing minimal complications. At least one modifiable barrier and multiple facilitators were identified in all cases. A standardized psychosocial assessment process with an established plan to mitigate barriers and promote facilitators to self-management is essential to optimize outcomes in patients with SCD undergoing elective HCT.

scholarly journals Web-Based Technology to Improve Disease Knowledge Among Adolescents With Sickle Cell Disease: Pilot Study (Preprint)

2019 ◽  
Author(s):  
Anjelica C Saulsberry ◽  
Jason R Hodges ◽  
Audrey Cole ◽  
Jerlym S Porter ◽  
Jane Hankins
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Participation Rate ◽  
Self Management ◽  
Cell Disease ◽  
Adult Care ◽  
Web Based ◽  
Disease Knowledge ◽  
Transition Readiness ◽  
One Step

BACKGROUND Advancements in treatment have contributed to increased survivorship among children with sickle cell disease (SCD). Increased transition readiness, encompassing disease knowledge and self-management skills before transfer to adult care, is necessary to ensure optimal health outcomes. The Sickle Cell Transition E-Learning Program (STEP) is a public, Web-based, 6-module tool designed to increase transition readiness for youth with SCD. OBJECTIVE The objective of our study was to investigate the participation rate of youth with SCD in STEP and its association with transition readiness. METHODS This was a single-center, Institution Review Board–approved, retrospective cohort review. A total of 183 youths with SCD, aged between 12 and 15 years, were offered STEP as an adjunct to in-clinic disease education sessions. Participation rate (number of patients who used at least one STEP module divided by those approached) was calculated. The association among the number of STEP modules completed, disease knowledge, and self-management was explored. RESULTS Overall, 53 of the 183 approached adolescents completed at least one STEP module, yielding a participation rate in STEP of 29.0%. Of the 53 participants, 37 and 39 adolescents had disease knowledge and self-management confidence rating available, respectively. A positive correlation (<italic>r</italic>=0.47) was found between the number of STEP modules completed and disease knowledge scores (<italic>P</italic>=.003). No association was found between the number of modules completed and self-management confidence ratings. Disease knowledge scores were significantly higher among participants who completed ≥3 STEP modules compared with those who completed &lt;3 STEP modules (<italic>U</italic>=149.00; <italic>P</italic>=.007). CONCLUSIONS Improvement in disease knowledge in adolescence is critical to ensure the youth’s ability to self-care during the period of transition to adult care. Despite low participation, the cumulative exposure to the STEP program suggested greater promotion of disease knowledge among adolescents with SCD before transfer to adult care.

scholarly journals Self management strategies for people with sickle cell disease in Ghana

2021 ◽  
Author(s):  
◽  
Andrews Adjei Druye
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Health Professionals ◽  
Best Practice ◽  
Management Strategies ◽  
Preventive Health ◽  
Self Management ◽  
Sequential Data ◽  
Cell Disease ◽  
Management Actions

<p>Sickle cell disease (SCD) is the commonest inherited haemoglobinopathy worldwide. Although it is a chronic disease, there is presently no international best practice for self-management of SCD. This exploratory sequential mix-methods study was designed to describe the self-management strategies utilised and their effectiveness for persons with SCD in Ghana. Self-management was conceptualised as actions that concerned preventive health, self-monitoring, self-diagnosing, self-treatment and self-evaluation. A four-stage sequential data collection and analysis process was used. Methods included website review, key informant interviews and surveys. The website review extracted from publically available websites the advice provided to people with SCD regarding keeping well, minimising the development of complications and managing complications. Health professional (n=9) interviews concerned self-management advice and the experiences patients shared of their self-management. Patients with SCD (n=9) and parents of children with SCD (n=10) interviews captured their experiences of self-management; and 112 patients (≥ 16 years) and 201 parents of children (≤15 years) were surveyed about their self-management strategies. Analysis used descriptive and inferential statistics and content and thematic techniques. Patients and parents reported that despite receiving limited clinical advice on self-management they undertook at least one self-management action daily. Most patients reported using multiple strategies; preventive health and maintenance actions were the commonest. Whilst most actions were directed at pain, patients and parents also outlined strategies for managing problems such as fever, leg ulcers, anaemia, priapism, abdominal swelling, jaundice, and hip pain. Most self-management actions were clinically safe, however several unsafe actions identified could pose health risks to patients. Overall, parents tended to be more frequent users of self-management actions for their children than the adults were for themselves. Apart from being an adult or child, self-management was not significantly influenced by key vulnerabilities and contextual factors. Although, many patients and parents had tried traditional practices, most only utilised recommendations from health professionals. Most patients and parents had rated the quality their or their child’s quality of life as good. There is a need for the development of an international, evidenced-informed approach to self-management of SCD. The Ministry of Health, health professionals and the Sickle Cell Association of Ghana could work collectively on this to ensure a culturally appropriate and economically viable approach is developed and implemented.</p>

scholarly journals An Electronic Teaching Module for Improving Knowledge of Self-Management of Vaso-Occlusive Pain Crises in Patients With Sickle Cell Disease: Pilot Questionnaire Study (Preprint)

2019 ◽  
Author(s):  
Tammie Tam ◽  
Maria R Baer ◽  
Lewis L Hsu ◽  
Jennie Y Law
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Small Sample Size ◽  
Treatment Options ◽  
Small Sample ◽  
Self Management ◽  
Cell Disease ◽  
Teaching Module ◽  
Baseline Knowledge ◽  
Electronic Teaching

BACKGROUND For patients with sickle cell disease (SCD), effective management of vaso-occlusive crises (VOCs) is integral to provision of care, as nearly all affected individuals will suffer from VOCs in their lifetime. A recent systematic review of technological interventions to improve self-management in the care of SCD concluded that electronic health has the potential to improve the care of individuals with SCD. OBJECTIVE The aim of this study was to assess the value of an electronic teaching module (ETM) provided by Emmi Solutions for educating adult SCD patients on VOC self-management and treatment options for SCD. METHODS A pretest assessed adults with SCD for baseline knowledge with regard to self-management of VOCs. Participants then watched the 35-min ETM and completed a posttest and survey on the ETM. RESULTS A total of 20 adults enrolled. Their knowledge scores improved (pretest median 66.5% and posttest median 85%; P<.001). In total, 18 participants (18/20, 90%) agreed that they “learned a lot” or “learned something” from the ETM. The most common topic about which they reported learning was hydroxyurea. A total of 12 participants (12/20, 60%) agreed with the statement that they “would recommend the module to a friend or family member with sickle cell disease.” CONCLUSIONS The ETM is associated with an increase in knowledge in patients with SCD. Limitations of the study include small sample size, no assessment of knowledge before premodule questionnaire completion, and no longitudinal follow-up. Identifying patients with SCD who demonstrate affinity for self-education via an ETM may further enhance utility of this tool to educate and empower patients.

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