ability to work are a function of changes in their health resulting from their cancer diagnosis (IOM and NRC, 2006).
In multiple focus groups and interviews, patients with a wide variety of chronic illnesses, such as diabetes, arthritis, heart disease, chronic obstructive lung disease, depression, and asthma, have identified pain, fatigue, problems with mobility, poor communication with physicians (with resultant poor understanding of their illness and how to manage it), depression and other negative emotions, stress, lack of family support, financial problems, loss of a job, and lack of health insurance as obstacles to managing their illness and health (Wdowik et al., 1997; Riegel and Carlson, 2002; Bayliss et al., 2003; Jerant et al., 2005). Patients were often unaware of resources available to help them overcome these problems, but when they were aware, limitations in mobility, fatigue, pain, transportation problems, cost issues, and lack of insurance prevented them from taking advantage of these resources (Jerant et al., 2005). Cancer patients and their health care providers offer similar reports of these social and psychological obstacles (IOM and NRC, 2003, 2004; NCI, 2004), which add to the suffering created by the illness, prevent adherence to prescribed treatments, and interfere with patients’ ability to manage their illness and their health. These problems and the effects of failing to address them are magnified in especially vulnerable and disadvantaged populations, such as those living in poverty; those with low literacy; members of cultural minorities; and those over age 65, who are more likely than younger individuals to experience the compounding effects of other chronic conditions that occur with aging.
Some of these stressors (described in the preceding sections) can come about as a consequence of cancer, others can predate the illness, while still others are imposed by the health care system itself. Although not all individuals treated for cancer face these problems, individuals who do so need the knowledge, skills, and abilities to manage them and function at their highest possible level. When these resources are not available, the ability to manage one’s illness and health is decreased.
Lack of Information, Knowledge, and Skills Needed to Manage the Illness
Members of ASCO, ONS, and AOSW report that information and education about cancer are the support services most frequently requested by their patients (Matthews et al., 2004). Patients similarly rate information needs pertaining to their illness and treatments as very important (Boberg et al., 2003). Yet over the past three decades research has consistently documented many patients’ and family members’ dissatisfaction with the