Mapping Information Needs over the Diagnosis, Treatment, and Survivorship Trajectory for Esophago-gastric Cancer Patient
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Mapping Information Needs over the Diagnosis, Treatment, and Survivorship Trajectory for Esophago-gastric Cancer Patients and Their Main Supporters: a Retrospective Survey Ingrid H. Flight 1 & Janine Chapman 1,2 & Nathan J. Harrison 1,2 & Jeff Bull 3,4 & Christine Christensen 5 & Bogda Koczwara 6 & Carlene J. Wilson 1,7,8
# American Association for Cancer Education 2020
Abstract This study reports preliminary data about the information needs of esophago-gastric cancer survivors and their supporters across diagnosis and treatment by identifying time-specific needs and whether the information provided aligned with the needs at each time point. Survivors (n = 26) and supporters (n = 15) were recruited from a public teaching hospital in South Australia. Both groups provided recall data describing personal information domain challenges at 6 clinically significant time points ranging from diagnosis to > 2 years post diagnosis. Responses were analyzed using descriptive statistics for non-normally distributed data. Needs relating to communication, tests, disease, and the physical effects information domains were consistently high across time and in groups. Supporters’ overall needs were greater than those of survivors, particularly at times of high need. At times of low need, both groups reported information overload. Our results confirm that survivors and supporters require information throughout the cancer trajectory, up to 2 years after diagnosis, and supporters’ needs are likely to be even greater. Results highlight the importance of timely and relevant information provision and provide a basis for the development of resources to empower survivors and supporters to identify and articulate their personal information needs. Patient navigators may provide an avenue to facilitate this approach. Keywords Esophageal cancer, . Gastric cancer . Information needs . Healthcare communication . Informal caregivers, . Shared decision-making
Introduction Morbidity and mortality rates for gastric and esophageal cancers are high worldwide [1]. However, there is little research
examining the specific information needs of these cancer patients and their informal carers, particularly long term. This study was a preliminary exploration of the range of information needs of survivors and their informal carers from
Electronic supplementary material The online version of this article (https://doi.org/10.1007/s13187-020-01862-7) contains supplementary material, which is available to authorized users. * Carlene J. Wilson [email protected]
5
Cancer Voices South Australia, Kensington Park, South Australia, Australia
1
Flinders Centre for Innovation in Cancer, College of Medicine and Public Health, Flinders University, Bedford Park, South Australia, Australia
6
Department of Medical Oncology, Flinders Centre for Innovation in Cancer, Flinders Medical Centre and Flinders University, Bedford Park, South Australia, Australia
2
National Centre for Education and Training on Addiction (NCETA), Flinders University, Bedford Park, South
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