Mouw Mary S, Wertman Eleanor A, Barrington Clare, Earp Jo Anne L
1 Cancer Control Education Program, UNC-Lineberger Comprehensive Cancer Center, University of North Carolina , Chapel Hill, North Carolina.
2 Department of Health Behavior, UNC Gillings School of Global Public Health , Chapel Hill, North Carolina.
J Adolesc Young Adult Oncol. 2017 Mar;6(1):111-119. doi: 10.1089/jayao.2016.0035. Epub 2016 Aug 3.
Most adolescent and young adult (AYA)-aged childhood cancer survivors develop physical and/or psychosocial sequelae; however, many do not receive long-term follow-up (LTF) critical for screening, prevention, and treatment of late effects. To develop a health services research agenda to optimize care models, we conducted qualitative research with LTF providers examining existing models, and successes and challenges in maintaining survivors' connections to care across their transition to adulthood.
We interviewed 20 LTF experts (MDs, RNs, social workers, education specialists, psychologists) from 10 Children's Oncology Group-affiliated institutions, and analyzed data using grounded theory and content analysis techniques.
Participants described the complexity of survivors' healthcare transitions. Survivors had pressing educational needs in multiple domains, and imparting the need for prevention was challenging. Multidisciplinary LTF teams focused on prevention and self-management. Care and decisions about transfer were individualized based on survivors' health risks, developmental issues, and family contexts. An interplay of provider and institutional factors, some of which were potentially modifiable, also influenced how transitions were managed. Interviewees rarely collaborated with community primary care providers to comanage patients. Communication systems and collective norms about sharing care limited comanagement capacity. Interviewees described staffing practices, policies, and informal initiatives they found reduced attrition.
Results suggest that survivors will benefit from care models that better connect patients, survivorship experts, and community providers for uninterrupted LTF across transitions. We propose research priorities, framing attrition from LTF as a public health concern, transition as the central challenge in LTF, and transition readiness as a multilevel concept.
大多数青少年及青年期（AYA）儿童癌症幸存者会出现身体和/或心理社会后遗症；然而，许多人并未接受对晚期效应的筛查、预防和治疗至关重要的长期随访（LTF）。为制定一项卫生服务研究议程以优化护理模式，我们对长期随访提供者进行了定性研究，考察现有模式以及在幸存者向成年期过渡期间维持其与护理联系方面的成功经验和挑战。
我们采访了来自10个儿童肿瘤学组附属机构的20名长期随访专家（医生、注册护士、社会工作者、教育专家、心理学家），并使用扎根理论和内容分析技术对数据进行了分析。
参与者描述了幸存者医疗保健过渡的复杂性。幸存者在多个领域有迫切的教育需求，而传达预防的必要性具有挑战性。多学科长期随访团队专注于预防和自我管理。基于幸存者的健康风险、发育问题和家庭背景，对转诊的护理和决策进行个体化。提供者和机构因素的相互作用，其中一些可能是可改变的，也影响了过渡的管理方式。受访者很少与社区初级保健提供者合作共同管理患者。关于共享护理的沟通系统和集体规范限制了共同管理能力。受访者描述了他们发现可减少流失的人员配置做法、政策和非正式举措。
结果表明，幸存者将受益于能更好地将患者、幸存者专家和社区提供者联系起来，以便在整个过渡期间进行不间断长期随访的护理模式。我们提出了研究重点，将长期随访中的流失视为一个公共卫生问题，将过渡视为长期随访中的核心挑战，并将过渡准备视为一个多层次概念。
