Addressing cancer survivors' information needs and satisfaction: a systematic review of potential intervention components for survivors with a rare cancer type.

Autor: Farrugia T; Violet Vines Marshman Centre for Rural Health Research, Rural Health School, La Trobe University, Bendigo, VIC, 3552, Australia. t.farrugia@latrobe.edu.au.; Rare Cancers Australia, 122/302-306 Bong Bong St, Bowral, NSW, 2576, Australia. t.farrugia@latrobe.edu.au., Duijts SFA; Violet Vines Marshman Centre for Rural Health Research, Rural Health School, La Trobe University, Bendigo, VIC, 3552, Australia.; Department of Research and Development, Netherlands Comprehensive Cancer Organisation (Integraal Kankercentrum Nederland, IKNL), Utrecht, The Netherlands.; Department of Medical Psychology, Amsterdam University Medical Centres, Location Vrije Universiteit, Amsterdam, The Netherlands.; Cancer Center Amsterdam, Cancer Treatment and Quality of Life, Amsterdam, The Netherlands., Wilson C; Melbourne School of Population and Global Health, Melbourne University, Melbourne, VIC, Australia., Hemming L; Violet Vines Marshman Centre for Rural Health Research, Rural Health School, La Trobe University, Bendigo, VIC, 3552, Australia., Cockburn C; Rare Cancers Australia, 122/302-306 Bong Bong St, Bowral, NSW, 2576, Australia., Spelten E; Violet Vines Marshman Centre for Rural Health Research, Rural Health School, La Trobe University, Bendigo, VIC, 3552, Australia.
Jazyk: angličtina
Zdroj: Orphanet journal of rare diseases [Orphanet J Rare Dis] 2024 Oct 18; Vol. 19 (1), pp. 387. Date of Electronic Publication: 2024 Oct 18.
DOI: 10.1186/s13023-024-03403-7
Abstrakt: Objective: 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.
Methods: 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.
Results: 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.
Conclusions: 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.
(© 2024. The Author(s).)
Databáze: MEDLINE
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