Communicating cancer treatment information using the Web: utilizing the patient’s perspective in website development

BMC Medical Informatics and Decision Making

Research Article

Olga C Damman¹  Danielle RM Timmermans¹  Wendy Hopmans²  Suresh Senan³  Cornelis JA Haasbeek³  Ben J Slotman³ 

[1] Department of Public and Occupational Health, EMGO+ Institute for Health and care research, VU University Medical Center, Van der Boechorststraat 7, 1081 BT, Amsterdam, The Netherlands;Department of Public and Occupational Health, EMGO+ Institute for Health and care research, VU University Medical Center, Van der Boechorststraat 7, 1081 BT, Amsterdam, The Netherlands;Department of Radiation Oncology, VU University Medical Center, De Boelelaan 1117, 1007MB, Amsterdam, The Netherlands;Department of Radiation Oncology, VU University Medical Center, De Boelelaan 1117, 1007MB, Amsterdam, The Netherlands;

关键词: Lung cancer;    Patient information;    Internet;    Treatment decisions;   

DOI  :  10.1186/s12911-014-0116-4

 received in 2014-04-17, accepted in 2014-11-20,  发布年份 2014

来源: Springer

【 摘 要 】

BackgroundOnline cancer information can support patients in making treatment decisions. However, such information may not be adequately tailored to the patient’s perspective, particularly if healthcare professionals do not sufficiently engage patient groups when developing online information. We applied qualitative user testing during the development of a patient information website on stereotactic ablative radiotherapy (SABR), a new guideline-recommended curative treatment for early-stage lung cancer.MethodsWe recruited 27 participants who included patients referred for SABR and their relatives. A qualitative user test of the website was performed in 18 subjects, followed by an additional evaluation by users after website redesign (N = 9). We primarily used the ‘thinking aloud’ approach and semi-structured interviewing. Qualitative data analysis was performed to assess the main findings reported by the participants.ResultsStudy participants preferred receiving different information that had been provided initially. Problems identified with the online information related to comprehending medical terminology, understanding the scientific evidence regarding SABR, and appreciating the side-effects associated with SABR. Following redesign of the website, participants reported fewer problems with understanding content, and some additional recommendations for better online information were identified.ConclusionsOur findings indicate that input from patients and their relatives allows for a more comprehensive and usable website for providing treatment information. Such a website can facilitate improved patient participation in treatment decision-making for cancer.

【 授权许可】

CC BY   
© Hopmans et al.; licensee BioMed Central Ltd. 2014