SurvivorLink: Scalability of an Electronic Personal Health Record for Cancer Survivors and Caregivers at Pediatric Cancer Centers.

SurvivorLink：儿科癌症中心癌症幸存者和护理人员电子个人健康记录的可扩展性。

• 批准号: 10358572
• 负责人: NGOC-CAM ESCOFFERY
• 金额: $ 57.29万
• 依托单位: EMORY UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-04-01 至 2024-09-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10358572
• 关键词: 21 year old; Adherence; Adolescent; Adolescent and Young Adult; Adoption; Affect; Awareness; Cancer Center; Cancer Survivor; Cancer Survivorship; Caregivers; Caring; Child; Child Care; Childhood; Chronic; Chronic Disease; Clinic; Clinical; Communication Tools; Complex; Consolidated Framework for Implementation Research; Development; Diagnosis; Disease Management; Education; Effectiveness; Electronic Health Record; Guidelines; Health; Health education; Healthcare; Hybrids; Individual; Information Technology; Institute of Medicine (U.S.); Intervention; Late Effects; Literature; Long-Term Care; Longevity; Longterm Follow-up; Malignant Childhood Neoplasm; Malignant Neoplasms; Measures; Methods; Online Systems; Patient Education; Patient-Centered Care; Patients; Pediatric Oncology Group; Penetration; Personal Health Records; Personal Satisfaction; Population; Process; Quality of Care; Quality of life; Randomized; Recommendation; Reporting; Research; Research Project Grants; Risk; Self Efficacy; Site; Standardization; Survivors; System; Systems Integration; Technology; Testing; Thinking; Time; Training; Visit; Waiting Lists; base; cancer care; cancer diagnosis; cancer therapy; care delivery; caregiver interventions; childhood cancer survivor; control trial; design; effectiveness implementation study; evidence base; evidence based guidelines; follow-up; group intervention; health record; implementation barriers; implementation framework; improved; innovation; member; patient population; post implementation; prevent; process evaluation; programs; public health priorities; satisfaction; screening; survivorship; uptake; web site; web-based tool

Summary Interventions for caregivers and pediatric cancer survivors are needed to improve patient-centered care, minimize late effects and promote overall well-being. The purpose of this research is to assess the impact of the SurvivorLink system on implementation and adherence to cancer care and late effects visits/screening. This research projects proposes to develop a standardized process by which to implement SurvivorLink, a personal electronic health record and education system, designed to promote survivor care, within pediatric cancer clinics. We will utilize a hybrid 1 effectiveness-implementation, clustered randomized, waitlist control design to evaluate its effectiveness across sites and among pediatric adolescent cancer survivors and their caregivers. The examination of the use and scalability of SurvivorLink would facilitate the adoption of evidence- based guidelines implementation for the surveillance of late effects among pediatric cancer centers at the national level. The specific aims for this research are to: Aim 1) develop a standardized intervention and training for the SurvivorLink trial; Aim 2a) evaluate the impact of SurvivorLink through a hybrid 1 effectiveness- implementation, clustered randomized waitlist control trial of pediatric cancer clinics on patient survivor care visit attendance and risk-based surveillance, caregiver’s patient activation, survivor’s and caregiver’s quality of life and self-efficacy to manage a chronic condition; 2b) conduct a process evaluation of the uptake of SurvivorLink to measure use, participation, acceptability, perceived usefulness and satisfaction among childhood survivors and their caregivers; 3) assess the adoption and integration of SurvivorLink into the clinical workflow, contextual facilitators and barriers to implementation, using the Consolidated Framework for Implementation Research framework, and measure early sustainability at 1 and 2 years post implementation through a mixed methods study; and Aim 4) assess the adoption and reach of Survivorlink among other pediatric cancer clinics from its dissemination on the Children’s Oncology Group Network website within 1 year of its development. This study is the first comprehensive, effectiveness-implementation study to evaluate the impact of an electronic personal health record (with care plan) and education system for pediatric cancer survivors and their caregivers. Our research will contribute to the literature about technological interventions to impact supportive and long-term care for pediatric cancer survivors. It will also identify the optimal organizational inner and outer setting facilitators (context) for its implementation among pediatric cancer clinics.

总结

项目成果

User-centered design and enhancement of an electronic personal health record to support survivors of pediatric cancers.

• DOI: 10.1007/s00520-019-05199-w
• 发表时间: 2020-08
• 期刊: Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer
• 作者: Marchak JG;Cherven B;Williamson Lewis R;Edwards P;Meacham LR;Palgon M;Escoffery C;Mertens AC
• 通讯作者: Mertens AC

Understanding caregivers' decision to vaccinate childhood cancer survivors against COVID-19.

• DOI: 10.1002/cam4.6675
• 发表时间: 2023-12
• 期刊: Cancer medicine
• 影响因子: 4