VAN MOSSEL C., LEITZ L., SCOTT S., DAUDT H., DENNIS D., WATSON H., ALFORD M., MITCHELL A., PAYEUR N., COSBY C., LEVI‐MILNE R. & PURKIS M.E. (2012) European Journal of Cancer Care21, 296–320 Information needs across the colorectal cancer care continuum: scoping the literature Because cancer care requires a multifaceted approach, providing useful and timely information to people with colorectal cancer may be fragmented and inconsistent. Our interest was in examining what has and has not captured the attention of researchers speaking to the information needs of people with colorectal cancer. We followed Arksey and O'Malley's framework for the methodology of scoping review. Focusing solely on colorectal cancer, we analysed 239 articles to get a picture of which information needs and sources of information, as well as the timing of providing information, were attended to. Treatment‐related information received the most mentions (26%). Healthcare professionals (49%) were mentioned as the most likely source of information. Among articles focused on one stage of the care continuum, post‐treatment (survivorship) received the most attention (16%). Only 27% of the articles consulted people with colorectal cancer and few attended to diet/nutrition and bowel management. This study examined the numerical representation of issues to which researchers attend, not the quality of the mentions. We ponder, however, on the relationship between the in/frequency of mentions and the actual information needs of people with colorectal cancer as well as the availability, sources and timing of information.

Background: Health agencies across the world have echoed the recommendation of the U.S. Institute of Medicine (iom) that survivorship care plans (scps) should be provided to patients upon completion of treatment. To date, reviews of scps have been limited to the United States. The present review offers an expanded scope and describes how scps are being designed, delivered, and evaluated in various countries. Methods: We collected scps from Canada, the United States, Europe, the United Kingdom, Australia, and New Zealand. We selected for analysis the scps for which we could obtain the actual scp, information about the delivery approach, and evaluation data. We conducted a content analysis and compared the scps with the iom guidelines. Results: Of 47 scps initially identified, 16 were analyzed. The scps incorporated several of the iom’s guidelines, but many did not include psychosocial services, identification of a key point of contact, genetic testing, and financial concerns. The model of delivery instituted by the U.K. National Cancer Survivorship Initiative stands out because of its unique approach that initiates care planning at diagnosis and stratifies patients into a follow-up program based on self-management capacities. Summary: There is considerable variation in the approach to delivery and the extent to which scps follow the original recommendations from the iom. We discuss the implications of this review for future care-planning programs and prospective research. A holistic approach to care that goes beyond the iom recommendations and that incorporates care planning from the point of diagnosis to beyond completion of treatment might improve people’s experience of cancer care.

Background: Our inter-professional research team believes that providing useful, relevant, and timely information for people diagnosed with cancer is a key component of ethical and quality care. This paper fills a gap in the literature on the information needs of people affected by colorectal cancer by presenting the voices of people affected. Methodology and methods: Finding no comprehensive research that fully identifies the information needs of people with colorectal cancer from their perspective, we designed a research project using the methodology narrative. Using three sources of data-stories found in the literature analysed using the method scoping review, researcher experience, and first hand accounts-we present a narrative of the what, when, and how of information needs of people with colorectal cancer. Findings: This re-storying can be represented by four very broad themes: i) finding my way in the moment(s), ii) understanding treatment, iii) ways to live, and iv) post treatment information needs. It also considers how people want/need information at various points along the care trajectory. Summary: This narrative begins and ends with the assertion that every person is unique and, to follow the principles of patient-centred care, healthcare providers must determine how each person's information needs can best be met, thereby improving people's experience not only of receiving care, but of living with cancer.