How do the information needs of cancer patients differ at different stages of the cancer journey? A cross-sectional survey

Abstract

Objectives: Providing information to cancer patients can have significant benefits to their psychological wellbeing. The aim of this study was to investigate whether and how information needs may differ for patients at different stages of the cancer journey.

Design: Cross-sectional, self-completed survey using convenience sampling.

Setting: Oncology outpatients in Wolverhampton, West Midlands.

Participants: Cancer patients aged 18 years and over.

Main outcome measures: The survey used Likert scales to determine whether patients wished to know more about 35 items of information categorized under seven domains: cancer (diagnosis); prognosis; treatment; rehabilitation; psychological/spiritual; social/family; and body image/sexuality. Each domain was scored, with higher scores indicating a greater wish for information.

Results: There were 187 participants (50% response rate). Patients tended to want more information, particularly related to prognosis. Post-treatment patients continued to have information needs comparable to patients undergoing treatment or at the pre-treatment stage, except with reference to treatment-related information (p = <0.01), although as time from diagnosis increased, information needs reduced. Educational attainment, age, treatment status, gender and ethnicity were all significant predictors of scores in various domains.

Conclusion: This study indicates that the time since diagnosis may interact with various demographic and disease-related factors in contributing to the information needs of cancer patients. The majority of cancer patients wish to know more about a wide range of factors, and such information seeking preferences are present regardless of an individual's stage following diagnosis.