Information needs and information seeking behaviour of patients during follow-up of colorectal cancer in the Netherlands

Adequately informing patients is considered crucial in cancer care, but need for information and information seeking behaviour of colorectal cancer (CRC) patients in the Netherlands are currently not well known. In a prospective study, patients participating in a specialty, hospital-based follow-up program completed three consecutive surveys over a 6-month period to analyse their information need and information seeking behaviour. Patients (n = 259) felt well informed about their treatment (86%), disease (84%), and follow-up program (80%), but less well informed about future expectations (49%), nutrition (43%), recommended physical activity (42%), and heredity of cancer (40%). The need for more information on these subjects remained constant over the first five postoperative years. Patients who were younger, who had undergone chemotherapy, or who had comorbid conditions needed more information on several subjects. One in three patients searched for information themselves, mostly on the Internet. One in four patients consulted a health care provider for information, mostly their GP. Younger and more educated patients more often searched for information themselves, while patients undergoing chemotherapy more often consulted the hospital nurse. Information seeking behaviour remained constant over time. This study showed where current information provision is perceived as adequate and on which subject improvements can be made. It identifies information seeking behaviour and proposes ways to personalize information provision. The GP is most frequently consulted for information; involving GPs in CRC follow-up could improve information provision on several subjects for several patients.