EHealth to support cancer survivors : development, implementation and evaluation of an interactive portal

Abstract

Many cancer survivors suffer from physical and psychosocial problems due to cancer itself and cancer treatment. Patient empowerment and eHealth offer opportunities to support cancer survivors. This thesis describes the development, implementation and evaluation of MijnAVL, an eHealth application. MijnAVL is an interactive portal that provides personal information and advice and has been developed in the Netherlands Cancer Institute (Antoni van Leeuwenhoek). The stepwise development consisted of literature review, focus groups, interviews and usability tests. Both cancer survivors and health professionals were involved to make sure that MijnAVL would fulfill their needs as much as possible. MijnAVL is available for breast and lung cancer survivors who are being or were treated with curative intent. The portal consists of: 1) tailored patient education; 2) overview of appointments in the hospital; 3) access to parts of the medical record; 4) patient-reported outcomes and feedback; 5) tailored physical activity advice; and 6) telemonitoring and online training (lung cancer survivors with surgery only). To evaluate the use of, experiences with and the preliminary efficacy of MijnAVL, a pilot study including 129 breast and lung cancer survivors was conducted. Participants first completed a questionnaire about their expectations of MijnAVL and about patient empowerment, quality of life and physical activity. Subsequently they could use MijnAVL noncommitally for four months and afterwards they completed a questionnaire about their experiences. Log-data were collected retrospectively. Participants rated MijnAVL with 7.7 on average and the overview of appointments was used most frequently. Access to the medical record did not or hardly lead to feelings of anxiety in most participants; this was contradictory to the expectations of health professionals. Additionally, participants indicated to have more knowledge and to feel more in control regarding their health status. The results demonstrate that MijnAVL is a feasible eHealth application for breast and lung cancer survivors and have contributed to the implementation of MijnAVL for all cancer survivors of the Antoni van Leeuwenhoek.