Information needs across time after a hematological cancer diagnosis: A qualitative study of patient and clinician perspectives.

Abstract

The aim of this study was to characterize the information needs experienced by adult patients across the continuum of their hematological cancer. Individual semi-structured telephone interviews were conducted with 28 adults with hematological cancer and 18 clinicians recruited from across Canada and analyzed using interpretive description. Distinct information needs were organized across seven points of the cancer continuum: prior to diagnosis, at diagnosis, prior to treatment, during treatment, after treatment, relapse/non-response, and end of life. Patients' information needs reflected a desire to better understand their current physical and psychosocial circumstances, as well as how to make decisions about their treatment, self-management, and health care. The need to receive information in a preparatory way was relevant across all phases of the cancer continuum. Our work contributes an initial approach for providing patient education and counselling for people with hematological cancers, which can be tailored based on individuals' unique characteristics and treatment pathways. Adults with hematological cancers require information to support decision making over the course of their diagnosis, treatment, and survivorship, but can experience information overwhelm. These findings provide an approach for organizing the delivery of information based on different points of need across the cancer continuum.