Filling the gaps of patient information needs and information perception in chronic myeloid leukemia with the patient-physician co-produced web-based platform CMyLife.

BACKGROUND

For patients with chronic myeloid leukemia, a web-based platform CMyLife was developed. Its aim is to enhance patient empowerment, by adequate information provision, among others. Before evaluating its effect, information provision and needs in current care were assessed.

OBJECTIVE

To assess patients' evaluation of received information and information needs before CMyLife utilization and whether this information source is used correspondingly. Additionally, we explored predicting patient factors in information perception.

PATIENT INVOLVEMENT: CMyLife platform was developed with active patient participation.

METHODS

We conducted a cross-sectional survey among 203 CML patients before launch of the CMyLife platform, using validated questionnaires on information provision and predictive factors. We focused on website utilization during the first 3 years, using Google Analytics. Regression analyses were performed to determine influence of patient factors on information perception.

RESULTS

Global perceived information provision was scored 42.8 (0-100). Information on other services such as rehabilitation and psychological support, and effects of treatment on sexuality showed room for improvement. One out of 3 knew where to find useful health information online. But more information was desired by 36% of them. Age ≥65 years, time since diagnosis and low education were positively associated with this need. Pages on medication and side effects were visited the most.

DISCUSSION: To fill the gap in perceived provision and needs, information should be adjusted more to the individual in content, manner and timing. Age, time since diagnosis, and educational level are of influence in perceived information, and specific needs within these groups should be further explored.

PRACTICAL VALUE: CMyLife provides reliable and up-to-date information for low eHealth literacy skilled patients concerning multiple topics indicated by patients.