Information needs and research priorities in long-term survivorship of breast cancer: Patients and health professionals' perspectives

被引:2
|
作者
Leon-Salas, Beatriz [1 ,2 ,3 ]
Alvarez-Perez, Yolanda [1 ,3 ]
Ramos-Garcia, Vanesa [1 ,3 ,4 ]
Trujillo-Martin, Ma del Mar [1 ,2 ,3 ]
de Pascual Y Medina, Ana Maria [5 ]
Esteva, Magdalena [6 ,7 ,8 ]
Brito-Garcia, Noe [9 ]
Gonzalez-Hernandez, Nerea [2 ,3 ,10 ,11 ]
Bohn-Sarmiento, Uriel [12 ]
Biurrun-Martinez, M. Concepcion [13 ]
Serrano-Aguilar, Pedro [2 ,3 ,5 ]
机构
[1] Canary Isl Hlth Res Inst Fdn FIISC, Tenerife, Spain
[2] Res Network Hlth Serv Chron Dis REDISSEC, Madrid, Spain
[3] Network Res Chronic Primary Care & Hlth Promot RI, Madrid, Spain
[4] Univ La Laguna ULL, Santa Cruz De Tenerife, Spain
[5] Canary Isl Hlth Serv SCS, Evaluat Unit SESCS, Tenerife, Spain
[6] Majorca Primary Care Dept, Res Unit, Palma De Mallorca, Spain
[7] Hlth Res Inst Balearic Isl IdISBa, Palma De Mallorca, Spain
[8] Red Invest Actividades Prevent & Promoc Salud Red, Madrid, Spain
[9] Spanish Soc Rheumatol, Res Unit, Madrid, Spain
[10] Kronikgune Inst Hlth Serv Res, Bizkaia, Basque Country, Spain
[11] Hosp Galdakao Usansolo, Res Unit, Galdakao, Bizkaia, Spain
[12] Univ Hosp Gran Canaria Dr Negrin, Med Oncol Serv, Las Palmas Gran Canaria, Spain
[13] Spanish Federat Breast Canc FECMA, Madrid, Spain
关键词
breast cancer; information need; research need; survivors; QUALITY-OF-LIFE; RESEARCH-AND-DEVELOPMENT; UNMET NEEDS; CARE; RECONSTRUCTION; DELPHI; MANAGEMENT; SURVIVAL; MEMORY; WASTE;
D O I
10.1111/ecc.13730
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
Objective The objective of this work is to identify unmet information needs of long-term-survivors of breast cancer (BC) and future research needs from the perspectives of patients and health care professionals. Methods Two online Delphi surveys were conducted. Participants in Survey 1 were patients. Participants in Survey 2 were health care professionals from both primary and secondary care involved in BC care. Both surveys included three successive rounds. The first round aimed to identify research and information needs; the second round aimed to rank the relative importance of those needs; the third round aimed to find consensus. Results The most important information needs were self-management recommendations of common health problems after treatment and complications of breast reconstruction after 5 years. The most important research priorities were related to interventions and tools to increase information provision by professionals about certain tests, diet, and coordinated action between primary and specialised care during follow-up, and indications and safety issues of pregnancy in survivors. Conclusions Two fundamental ideas were identified: (1) Patients request information about self-management common health problems after treatment and breast reconstruction complications. (2) Health care professionals emphasise the need for a standardised approach based on protocols, recommendations, and coordinated actions in the provision of information. Implications for cancer survivors Given the increasing number of BC survivors, it is essential to identify information and research needs to improve their care and health outcomes.
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页数:10
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