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Implementation of an educational intervention to optimize self-management and transition readiness in young adults with sickle cell disease.

ABSTRACT: BACKGROUND:The transition from the pediatric setting to adult care is a well-described period of morbidity and mortality for persons with sickle cell disease (SCD). We sought to measure the feasibility and effectiveness of providing skill-based educational handouts on improving self-management and transition readiness in adolescents with SCD. METHODS:This was a single-center study in which participants completed a self-assessment, the Adolescent Autonomy Checklist (AAC), to assess transition readiness and self-management skills at baseline. After results were reviewed by the study coordinator, participants were provided with skill-based handouts on noted areas of deficit. The AAC was subsequently completed at a follow-up visit. All data were stored electronically and transferred into SAS for statistical analyses. RESULTS:Sixty-one patients completed the AAC at baseline and postintervention. At baseline, patients reported needing the most help with skills in money management, living arrangements, vocational skills, and emergency and healthcare skills. Postintervention, statistically significant improvements (P < 0.05) occurred in skills related to laundry, housekeeping, healthcare, and sexual development. A regression model exploring the time to follow-up showed that most improvements could not be attributed to maturation alone. CONCLUSION:This study showed that educational handouts are a readily implementable and well-accepted intervention among adolescents with SCD who identify challenges with skills necessary to successfully transition to adult care. Distinguishing which transition needs are best improved with this type of intervention will help to strengthen the multidisciplinary approach necessary to support adolescents and young adults with SCD as they matriculate to adult care.

SUBMITTER: Calhoun CL

PROVIDER: S-EPMC6529244 | biostudies-literature | 2019 Jul

REPOSITORIES: biostudies-literature

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Implementation of an educational intervention to optimize self-management and transition readiness in young adults with sickle cell disease.

Calhoun Cecelia L CL Abel Regina A RA Pham Hai Ahn HA Thompson Shomari S King Allison A AA

Pediatric blood & cancer 20190325 7

<h4>Background</h4>The transition from the pediatric setting to adult care is a well-described period of morbidity and mortality for persons with sickle cell disease (SCD). We sought to measure the feasibility and effectiveness of providing skill-based educational handouts on improving self-management and transition readiness in adolescents with SCD.<h4>Methods</h4>This was a single-center study in which participants completed a self-assessment, the Adolescent Autonomy Checklist (AAC), to assess ...[more]

PMID: 30907500

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Project description:BackgroundChildhood cancer survivors require lifelong risk-based follow-up care. It should be noted that less than one-third of adult survivors of childhood cancer report any survivor-focused care, and fewer than 1 in 5 obtain risk-based follow-up care. It is thought that this may be due to inadequate transition readiness, including low levels of knowledge, skills, motivation, and resources to make the transition to independent self-management of follow-up care. Interventions that focus specifically on improving the transition from parent-managed to self-managed care are needed. Theory and prior research suggest that targeting self-management skills and using peer mentoring may be innovative strategies to improve transition readiness.ObjectiveThis study aims to identify the content of a self-management intervention to improve transition readiness among adolescent and young adult (AYA) survivors.MethodsIntervention development occurred in 3 stages: formative research with AYA survivors to identify barriers and facilitators to obtaining risk-based survivorship care, content development using feedback from multiple stakeholders (AYA survivors, parents, and providers), and content refinement (usability testing) of the initial proposed educational modules for the program. Content analysis, guided by the social-ecological model of AYA readiness for transition, was used to identify themes and develop and refine the content for the intervention.ResultsA total of 19 AYA survivors participated in the formative research stage, and 10 AYA survivors, parents, and health care providers participated in the content development and refinement stages. The major barrier and facilitator themes identified included knowledge of cancer history and risks; relationships with health care providers; relationships with family members involved in care; emotions about health, follow-up care, and transfer of care; and lifestyle behaviors and life transitions. These themes were translated into 5 self-management modules: understanding treatment history and the survivorship care plan, managing health care logistics and insurance, communicating with health care providers and family members involved in care, dealing with emotions, and staying healthy in the context of life transitions. Feedback from the key stakeholders indicated that the content was relevant but should include participative elements (videos and tailored feedback) to make the intervention more engaging. The AYA survivors were receptive to the idea of working with a peer mentor and expressed a preference for using SMS text messaging, telephone calls, or videoconference to communicate with their mentor.ConclusionsIncorporating AYA survivors, parents, and providers in the design was essential to developing the content of a self-management and peer-mentoring intervention. AYA survivors confirmed the important targets for the intervention and facilitated design decisions in line with our target users' preferences. The next step will be to conduct a single-arm trial to determine the feasibility and acceptability of the proposed intervention among AYA survivors of childhood cancer.

Project description:OBJECTIVE:The aim of this study was to design and evaluate a smartphone-based application for improving self-management in patients with asthma and evaluate its effects on their knowledge. METHODS:In this applied research, based on the Clinical Practice Guideline and a systematic review, a questionnaire was designed to determine the application information content and functionality requirements by 15 pediatric and adult asthma and allergy specialist. Then the application was designed and developed using Adobe Air software on the Android operating system. Usability evaluation of the mobile application was performed using the standard questionnaire for user interaction satisfaction (QUIS), which completed by 30 patients with asthma, 8 information technology (IT) specialists, and 2 asthma and allergy specialists. Self-management knowledge of 30 asthma patients was measured using a researcher-made questionnaire before and after using the application. RESULTS:The number of specialists in the both Delphi rounds was 15 and the mean work experiences were 17.6 years. The most important elements for asthma self-management were avoiding exposure to allergen and triggers (96%), drug treatment (94.6%), and how to use the therapeutic tools (92.4%), and the most important functionalities were alerting the patients when they did not control asthma (92%), setting reminders for timely drug use (85.4%) and therapeutic tools (82.6%), recording prescription drugs (82.6%), and peak flow meter values (82%). Usability evaluation showed that 30 patients with asthma, 8 IT specialists, and 2 physicians evaluated the application at a "good" level. The mean score of the patients' knowledge before intervention was 2.43?±?0.95 which after intervention was significantly increased to 4.3?±?0.56 (p?<?0.001). CONCLUSION:Considering the desirable outcomes of application evaluation and a positive impact of this educational intervention on asthma patients' knowledge, it is possible to use mobile-based self-management programs to help these patients to manage illness and gain knowledge and self-management skills.

Project description:BackgroundHeart failure (HF) is common, costly and associated with significant morbidity and poor quality of life, particularly for patients with low socioeconomic status. Self-management training has been shown to reduce HF related morbidity and hospitalization rates, but there is uncertainty about how best to deliver such training and what patients benefit. This study compares a single session self-management HF training program against a multiple session training intervention and examines whether their effects differ by literacy level.Methods/designIn this randomized controlled multi-site trial, English and Spanish-speaking patients are recruited from university-affiliated General Internal Medicine and Cardiology clinics at 4 sites across the United States. Eligible patients have HF with New York Heart Association class II-IV symptoms and are prescribed a loop diuretic. Baseline data, including literacy level, are collected at enrollment and follow-up surveys are conducted at 1, 6 and 12 months. Upon enrollment, both the control and intervention groups receive the same 40 minute, literacy-sensitive, in-person, HF education session covering the 4 key self-management components of daily self assessment and having a plan, salt avoidance, exercise, and medication adherence. All participants also receive a literacy-sensitive workbook and a digital bathroom scale. After the baseline education was completed, patients are randomly allocated to return to usual care or to receive ongoing education and training. The intervention group receives an additional 20 minutes of education on weight and symptom-based diuretic self-adjustment, as well as periodic follow-up phone calls from the educator over the course of 1 year. These phone calls are designed to reinforce the education, assess participant knowledge of the education and address barriers to success.The primary outcome is the combined incidence of all cause hospitalization and death. Secondary outcomes include HF-related quality of life, HF-related hospitalizations, knowledge regarding HF, self-care behavior, and self-efficacy. The effects of each intervention will be stratified by patient literacy, in order to identify any differential effects.DiscussionEnrollment of the proposed 660 subjects will continue through the end of 2009. Outcome assessments are projected to be completed by early 2011.Trial registrationClinicalTrials.gov (http://www.clinicaltrials.gov/) NCT00378950.

Project description:ImportanceHealth literacy has been shown to play an important role in transitions of care in adult populations, with low health literacy associated with adverse health outcomes. The role of health literacy in the transition from pediatric to adult care has been less well studied. Among adolescents and young adults with spina bifida, high rates of unsuccessful transition have been shown, but how patient health literacy affects transition readiness remains unknown.ObjectiveTo determine whether health literacy is associated with transition readiness in adolescents and young adults with spina bifida.Design, setting, and participantsThis cross-sectional study involved collection of patient-reported questionnaires between June 2019 and March 2020 at a multidisciplinary spina bifida center at a single, free-standing children's hospital. Patient demographic and clinical characteristics were obtained from medical record review. Patients were aged 12 years or older with a diagnosis of spina bifida (myelomeningocele and nonmyelomeningocele) whose primary language was English or Spanish. Data analysis was performed from October 2020 to March 2021.ExposuresHealth literacy as assessed by the Brief Health Literacy Screening Tool.Main outcomes and measuresThe primary outcome was total Transition Readiness Assessment Questionnaire (TRAQ) score, normalized into units of SD. Nested, multivariable linear regression models assessed the association between health literacy and TRAQ scores.ResultsThe TRAQ and Brief Health Literacy Screening Tool were completed by 200 individuals (median [range] age, 17.0 [12.0-31.0] years; 104 female participants [52.0%]). Most of the patients were younger than 18 years (110 participants [55.0%]) and White (136 participants [68.0%]) and had myelomeningocele (125 participants [62.5%]). The mean (SD) TRAQ score was 3.3 (1.1). Sixty-six participants (33.0%) reported inadequate health literacy, 60 participants (30.0%) reported marginal health literacy, and 74 participants (37.0%) reported adequate health literacy. In univariable analysis, health literacy, age, type of spina bifida, level of education, self-administration vs completion of the questionnaires with assistance, ambulatory status, and urinary incontinence were associated with total TRAQ score. In all nested, sequentially adjusted, multivariable models, higher health literacy remained a significant, stepwise, independent variable associated with higher TRAQ score. In the fully adjusted model, having adequate compared with inadequate health literacy was associated with an increase in normalized TRAQ score of 0.49 SD (95% CI, 0.19-0.79).Conclusions and relevancePatient-reported transition readiness is associated with health literacy, even after adjustment for education level and other demographic and clinical factors. Developing and implementing health literacy-sensitive care programs during the transition process may improve patient transition readiness.

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Implementation of an educational intervention to optimize self-management and transition readiness in young adults with sickle cell disease.

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Implementation of an educational intervention to optimize self-management and transition readiness in young adults with sickle cell disease.

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