Violet Vines Marshman Centre for Rural Health Research, Rural Health School, La Trobe University, Bendigo, VIC, 3552, Australia.
Rare Cancers Australia, 122/302-306 Bong Bong St, Bowral, NSW, 2576, Australia.
Orphanet J Rare Dis. 2024 Oct 18;19(1):387. doi: 10.1186/s13023-024-03403-7.
Providing current, evidence-based information to cancer survivors is critical for informed decision making. People diagnosed with a rare cancer report higher unmet information needs compared to common cancer survivors. However, interventions providing informational support for rare cancers are limited. Therefore, the aims of this systematic review were to identify and synthesise interventions decreasing survivors' information needs and/or improving satisfaction with information, and to explore potential components to be included in an intervention for rare cancer survivors.
Searches were conducted in PubMed, CINAHL, Embase, PsycINFO and the Cochrane Library. Studies reporting an intervention targeting information needs and/or patient satisfaction with information in survivors of any cancer type were included. Data were extracted, a quality assessment performed and findings were synthesised.
A total of 7012 studies were identified and 34 were included in the review. Five studies targeted patients with a rare cancer type; the remaining studies included common cancer survivors. Interventions varied in relation to the mode of information provision, timing of intervention delivery, and the intervention provider. The most promising interventions included face-to-face communication and written material and were delivered by a nurse. All rare cancer studies were designed around a web-based program, but none of them improved outcomes.
Interventions targeting information needs and/or patient satisfaction with information in rare cancer survivors are lacking. Future studies should focus on this underserved group, and successful aspects of interventions for common cancer survivors should be considered for inclusion when designing an intervention for rare cancer survivors.
为癌症幸存者提供最新的循证信息对于知情决策至关重要。与常见癌症幸存者相比，被诊断患有罕见癌症的患者报告的未满足信息需求更高。然而，提供罕见癌症信息支持的干预措施有限。因此，本系统评价的目的是确定和综合减少幸存者信息需求和/或提高信息满意度的干预措施，并探讨可能包含在罕见癌症幸存者干预措施中的组成部分。
在 PubMed、CINAHL、Embase、PsycINFO 和 Cochrane Library 中进行了检索。纳入了针对任何癌症类型幸存者的信息需求和/或对信息满意度的干预措施进行报告的研究。提取数据、进行质量评估并综合研究结果。
共确定了 7012 项研究，其中 34 项研究纳入了本综述。有 5 项研究针对罕见癌症类型的患者；其余研究纳入了常见癌症幸存者。干预措施在信息提供方式、干预实施时间和干预提供者方面存在差异。最有前途的干预措施包括面对面沟通和书面材料，并且由护士提供。所有罕见癌症研究都是围绕基于网络的程序设计的，但没有一项研究能改善结果。
针对罕见癌症幸存者的信息需求和/或对信息满意度的干预措施不足。未来的研究应关注这一未得到充分服务的群体，并且在为罕见癌症幸存者设计干预措施时，应考虑常见癌症幸存者干预措施的成功方面。
