information and education they receive (Chapman and Rush, 2003) and how their health care providers communicate with them (Epstein and Street, 2007). While research has not yet yielded a comprehensive road map for how best to provide the full array of information needed at various times during and after cancer treatment, it has illuminated several characteristics of the effective provision of information. For example, information should be tailored to each patient’s expectations and preferences (e.g., much detailed information in advance versus less information provided on an as-needed basis), as well as to the patient’s individual diagnosis and clinical situation. Evidence also indicates that patients’ wide range of information needs (e.g., information specific to their type and stage of cancer, treatment, prognosis, rehabilitation, achievement and maintenance of maximal health, coping, and financial/legal concerns) change over time, for example, during and after treatment (Rutten et al., 2005; Epstein and Street, 2007). Further, anxiety decreases satisfaction with information provided. Anxiety and other side effects of the illness and its treatment, such as pain, need to be controlled if information is to be useful (Chapman and Rush, 2003). However, evidence indicates that measures to control such side effects, as well as more basic practices to meet patients’ information needs effectively, are not employed; many patients continue to have insufficient information to help them manage their illness and health (Eakin and Strycker, 2001; Boberg et al., 2003; Skalla et al., 2004; Mallinger et al., 2005). Fifteen percent of respondents to the 2006 National Survey of U.S. Households Affected by Cancer said they had had the experience of leaving a doctor’s office without getting answers to important questions about their illness (USA Today et al., 2006).

Related to these findings, members of ASCO, ONS, and AOSW reported that support groups were the second most frequent subject of patient inquiries about support services (Matthews et al., 2004). Peer support programs in which people communicate and share experiences with others having a common personal experience are strong mechanisms for building one’s “self-efficacy”—the belief that one is capable of carrying out a course of action to reach a desired goal (Bandura, 1997). Self-efficacy is a critical determinant of how well knowledge and skills are obtained and is an excellent predictor of behavior. There is also evidence that self-efficacy is key to individuals’ successful self-management of a range of chronic illnesses, resulting in improved health outcomes (Lorig et al., 2001; Lorig and Holman, 2003). However, although peer support programs are widespread, providers are not always aware of these resources and often do not refer patients to them (IOM, 2007). Failure to refer patients to these services is associated with their low use (Eakin and Strycker, 2001).

The National Academies of Sciences, Engineering, and Medicine
500 Fifth St. N.W. | Washington, D.C. 20001

Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement