Pilot of the Chronic Disease Self-Management Program for Adolescents and Young Adults With Sickle Cell Disease

Crosby, Lori E.; Joffe, Naomi E.; Peugh, James; Ware, Russell E.; Britto, Maria T.

doi:10.1016/j.jadohealth.2016.08.022

Cited by 38 publications

(63 citation statements)

References 6 publications

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“…61 There is preliminary evidence that it is sensitive to interventions. 62,63 Thus, the PRO panel recommends using the SCSES to measure self-efficacy in adolescents and adults with SCD.…”

Section: Measuring Pros Related To Functionmentioning

confidence: 99%

End points for sickle cell disease clinical trials: patient-reported outcomes, pain, and the brain

Farrell

Panepinto

Carroll³

et al. 2019

Blood Advances

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To address the global burden of sickle cell disease (SCD) and the need for novel therapies, the American Society of Hematology partnered with the US Food and Drug Administration to engage the work of 7 panels of clinicians, investigators, and patients to develop consensus recommendations for clinical trial end points. The panels conducted their work through literature reviews, assessment of available evidence, and expert judgment focusing on end points related to: patient-reported outcomes (PROs), pain (non-PROs), the brain, end-organ considerations, biomarkers, measurement of cure, and low-resource settings. This article presents the findings and recommendations of the PROs, pain, and brain panels, as well as relevant findings and recommendations from the biomarkers panel. The panels identify end points, where there were supporting data, to use in clinical trials of SCD. In addition, the panels discuss where further research is needed to support the development and validation of additional clinical trial end points.

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“…61 There is preliminary evidence that it is sensitive to interventions. 62,63 Thus, the PRO panel recommends using the SCSES to measure self-efficacy in adolescents and adults with SCD.…”

Section: Measuring Pros Related To Functionmentioning

confidence: 99%

End points for sickle cell disease clinical trials: patient-reported outcomes, pain, and the brain

Farrell

Panepinto

Carroll³

et al. 2019

Blood Advances

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“…Although several SCD‐specific self‐management interventions have been developed and evaluated, 31‐37 the direct association between the larger construct of BA and health outcomes is understudied. Further, interventions must incorporate the social context (eg, connection with peers) and capitalize on newer technologies to motivate AYA with SCD in sustainable health behavior change.…”

Section: Introductionmentioning

confidence: 99%

Improving self‐management in adolescents with sickle cell disease

Crosby

Hood

Kidwell

et al. 2020

Pediatric Blood & Cancer

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Background Sickle cell disease (SCD) is associated with significant medical challenges that often worsen in adolescence when caregivers are beginning to transfer responsibility for disease management. Behavioral activation (BA) is an important precedent to improvements in self‐management and ultimately health outcomes; however, few interventions targeting BA have been developed for the SCD population. The goal of the present study was to evaluate a technology‐enhanced self‐management intervention for adolescents and young adults (AYA) with SCD targeting BA domains (ie, disease knowledge, self‐efficacy, motivation, and self‐management skills). Design/methods Participants were randomized to one of two study arms. SCThrive participants (N = 26) completed six weekly group sessions, an in‐person booster session, and used a companion app (iManage) to record symptoms, progress on goals, and connect with other group members. Each SCHealthEd participant (N = 27) received six weekly phone calls on SCD‐related and general health education topics. All AYA completed questionnaires assessing BA at baseline and posttreatment. Results Separate mixed ANOVA analyses to assess for the effects of group (SCThrive/SCHealthEd), time (baseline/posttreatment), and group × time interaction indicated that there was a clinically meaningful improvement (8‐point change) in self‐efficacy, with a medium effect size, P = .09, η2 = .06, and there was statistically significant improvement in one self‐management skill (tracking health), P = .001, d = .71, among SCThrive participants. Conclusions The results support the potential for a self‐management intervention to improve self‐efficacy in AYA with SCD. Health care providers are encouraged to target BA skills to support self‐management of AYA with SCD.

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“…Currently only pilot studies of transition programmes based on biopsychosocial approaches have been performed [13][14][15][16], with encouraging primary results [13].…”

Section: Introductionmentioning

confidence: 99%

Impact of a paediatric-adult care transition programme on the health status of patients with sickle cell disease: study protocol for a randomised controlled trial (the DREPADO trial)

Hoegy

Bleyzac

Gauthier-Vasserot

et al. 2019

Preprint

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Background: Thanks to the advancements in medical care, a majority of sickle cell disease patients worldwide live beyond 18 years of age, and therefore patients initially followed in paediatric departments are then transferred to adult departments. This paediatric-adult care transition is a period with an increased risk of discontinuity of care and so morbidity and mortality. During this period, the patient will have to manage new interlocutors and places of care, and personal issues related to the period of adolescence. To take into consideration all these aspects, an interesting approach is to refer to the patient as a whole system as presented in biopsychosocial approach. The aim of this trial is to evaluate the impact of the proposed biopsychosocial paediatric-adult transition programme. Methods: The DREPADO study is a multicentre randomised control trial comparing a control group ( Arm A ) versus an interventional group with paediatric-adult transition programme based on a biopsychosocial approach ( Arm B ). To be included, patients should suffer of SS, SC or Sβ-form of sickle cell disease and aged between 16 and 17 years. The randomisation in a 1:1 ratio assigns the Arm A or B . The primary outcome is the number of hospital admissions and emergency in the index hospital for complications, in the 2-years after the first consultation in the adult department of care. Secondary outcomes consider the quality of life, but also included coping skills such as self-efficacy feeling and disease knowledge. To provide patient and parent knowledge and coping skills, the transition program is composed of 3 axis : educational, psychological and social, conducted in individual and group.Discussion: By providing self-care knowledge and coping skills related to SCD and therapeutics, helping patient's empowerment related to pain management and emotions and facilitating the relationship to oneself, others and care in the Arm B of DREPADO study, we believe that the morbidity and mortality of patients with SCD may be reduced after the proposed paediatric-adult transition programme. Trial registration: ClinicalTrials.gov, ID: NCT03786549; registered on 17 th December 2018; https://clinicaltrials.gov/.

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Pilot of the Chronic Disease Self-Management Program for Adolescents and Young Adults With Sickle Cell Disease

Cited by 38 publications

References 6 publications

End points for sickle cell disease clinical trials: patient-reported outcomes, pain, and the brain

End points for sickle cell disease clinical trials: patient-reported outcomes, pain, and the brain

Improving self‐management in adolescents with sickle cell disease

Impact of a paediatric-adult care transition programme on the health status of patients with sickle cell disease: study protocol for a randomised controlled trial (the DREPADO trial)

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