Background Patient education should be part of improvement strategies to increase guideline adherence by professionals.
Objectives This study evaluates an e-tool designed in response to patients’ need for more complete information regarding diagnostics, therapy and after-care (based on previous research). The e-tool aims to inform patients about non-Hodgkin’s lymphoma (NHL)-care and gives patients the possibility to check their own care pathway and register personal experiences.
Methods The e-tool was developed in consultation with the Dutch Lymphoma Patients Organization and evaluated by NHL-patients, professionals and laymen. Feedback was asked concerning lay-out, user convenience, information provision and general strengths and weaknesses of the e-tool. The effect of the e-tool is now tested in 9 Dutch hospitals. Patients are included from November 2012 to November 2013. All patients receive patient information and an informed consent form. The process of inclusion is continuously monitored.
Results In the development phase, 18 out of 26 feedback forms were filled out. Information needs were satisfactory and clearness of navigation and information on new therapies were improved after feedback. In the first 3 months of the testing phase, 25 of the historically estimated 50 patients received patient information, 12 consented and 8 used the e-tool.
Discussion The e-tool seems feasible to empower patients regarding their NHL-care pathway. However, distribution of patient information is not yet optimal. Patients’ experiences with the e-tool and possible effects on quality of care is tested in a randomised controlled trial.
Implications Educational e-tools for patients may help to improve guideline development and adherence.
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