Patient Education and Breast Cancer

Patient Education and Breast Cancer

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Although breast cancer is still the most common cancer diagnosis among women, long-term survival rates have been steadily increasing since 1990, and there are currently over 2.5 million breast cancer survivors in the US.1 However, now that the majority of breast cancer patients are surviving for longer, there has also been increasing clarity and concern around the long-term consequences and quality of life issues facing breast cancer survivors, including emotional distress, sexual dysfunction, and changes in lifestyle. Fortunately, patient education resources for breast cancer survivors have increased dramatically in recent years.

This article will outline current advances in breast cancer patient education with regard to three primary areas: psychosocial education, sexual rehabilitation, and fertility-related concerns, as well as lifestyle interventions (e.g. diet and exercise). Various patient education resources will be underlined and cultural barriers to patient education will be discussed.

Patient Education
There are an increasing number of educational resources available to address the needs of breast cancer patients and survivors. Various educational interventions have been shown to have significant benefits on quality of life as well as on a range of symptoms from lowering anxiety about cancer recurrence to helping women manage changes in lifestyle after breast cancer.2,3 Educational interventions have been delivered to patients using a variety of methods including individual, group, and couples counseling and psycho-educational support via print, telephone, and/or the Internet. Although the majority of educational interventions over the past 30 years have been aimed at women who are being treated, growing numbers of interventions are now also being developed for the transition from treatment to survivorship.2

The main reason that most cancer patients call cancer-related hotlines is to obtain information and education about their disease and treatment.4,5 Similarly, it has been shown that interventions that are specifically educational in nature seem to meet the largest portion of needs among breast cancer patients.6 Education and information are available to patients through various modalities. Recent research has highlighted the need to develop patient education that is easily disseminated and economically feasible within diverse patient populations.7 There has been a veritable explosion of online educational resources for breast cancer patients, representing a double-edged sword for patients with the potential to be empowering and beneficial as well as confusing and even misleading. Appropriate Internet materials can be particularly valuable in settings where resources are limited or where specialized oncology care is not offered. Examples of high-quality Internet-based resources are websites such as the National Cancer Institute (NCA; www.cancer.gov), the American Cancer Society (ACS; www.cancer.org), the Susan G Komen Foundation (www.komen.org), and the Lance Armstrong Foundation (www.laf.org). In addition to providing educational materials, these sites provide resources for more specialized referral services, for example to support groups and complementary cancer therapies such as acupuncture and chiropractic treatment. Furthermore, there are breast cancer patients who may need more targeted interventions (e.g. nutritional guidance, sexual rehabilitation counseling) or more intensive interventions such as individual counseling or group support for depression or anxiety.

Psychosocial Challenges Following Cancer Diagnosis
Approximately 50% of cancer patients receive a psychiatric diagnosis, with about two-thirds representing adjustment disorders related to the impact of the illness.8 Cancer patients begin to feel the burden of their life-threatening illness on quality of life from the time of diagnosis, when physical, psychological, and social realities are immediately altered. Indeed, the majority of cancer patients report feeling worried and sad at some point during their treatment, and over 80% of breast cancer survivors express worry about disease recurrence.9 For most breast cancer patients, the bulk of ‘normal distress’ does not significantly impair daily functioning and will be limited to the duration of their treatment.10 However, there is a subset of survivors who struggle with major depression11,12 and survivors for whom the effect of this illness remains present many years after the completion of treatment.13 In addition, some breast cancer survivors report feeling pain,14 symptoms of post-traumatic stress,15 and cognitive impairments.16

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