Significance of Patient Education and Counseling in Improving Breast Healthcare

“The failure to obtain relevant personal information about a patient's risk of developing breast cancer is the first step in failure during early breast cancer detection and prevention.”

Breast cancer is the leading cause of cancer morbidity and second leading cause of cancer deaths for women in the USA. More than 200,000 new cases are diagnosed each year and over 40,000 women die of this disease [1]. In addition, the diagnosis of breast cancer is associated with serious emotional issues, such as depression, anxiety and negative perception of self-image [2–6]. The patients experience the need for proper direction and guidance from their physicians and are often overwhelmed with scattered and fragmented information concerning their disease [2,7]. Currently, there is a variety of breast cancer education material available on the internet. However, these websites can be difficult to navigate and tend to present information that is not easily understood [8–10]. In addition, rapid advances in treatment may render information obsolete [11]. Another major challenge for breast cancer patients and their healthcare providers revolves around the quality of information on the internet and the accuracy of the available findings. More importantly, access to web-based breast cancer education may not be available to low-income and the medically underserved population of patients [12–14].

There is no doubt that knowledge of breast cancer diagnosis and its treatment is generally low among breast cancer patients [14–16]. This problem is more pronounced among African–American women and women with less education [14]. It appears that knowledge of breast cancer is greater for women who have access to the internet and read health-related pamphlets [14]. Similarly, women who discuss a greater number of breast cancer topics with their physicians become more knowledgeable about their disease [17]. Therefore, low breast cancer knowledge, owing to a lack of resources and/or overall low health literacy, may potentially jeopardize appropriate decision making and adversely influence the outcome of the patient.

Patient education is a complex process and is a core component of the patient–physician relationship. Studies have demonstrated a direct relationship between the level of contribution by a physician to educate the patient and the level of patient satisfaction and compliance with their follow-up management [18–21]. The patients need a great amount of specific information about the nature of their illness and their options for therapy [22,23]. This need is highest at the initial phase of therapy and may change during the course of treatment [24–26].

“There is no doubt that knowledge of breast cancer diagnosis and its treatment is generally low among breast cancer patients.”

The information provided to the newly diagnosed breast cancer patient can have a variable impact on decision-making preferences. One study found that an average of 38% of the patients preferred the physician to make the decision, 27% of patients wished to share the decision and 35% wished to decide alone [24]. Other studies with breast cancer patients have found lower preference for passive decision making [27–31]. During the course of treatment, these choices may change [32]. In order to meet the need and the expectation of breast cancer patients, it is necessary for the physicians to assess patient' decision-making preferences, not only in the beginning of therapy, but over the entire course of cancer treatment.

At present, there is sufficient evidence to support that patient participation in decision making enhances a patient's control over their healthcare, results in more patient-oriented decisions and may lead to better health outcomes [33–38]. Participation of patients in the decision-making process requires well-informed patients. Among newly diagnosed breast cancer patients, most patients were more likely to make inquiries that evolved around the likelihood of care, treatment options, stage of the disease and overall clinical outcome. After the initial therapy, patients need information concerning recovery, the risk for other family members for subsequence development of cancer and the information about self-care and rehabilitation [32].

Aside from the necessity of delivering patient information concerning diagnosis and therapy to every single breast cancer patient, it is equally important for physicians involved in breast healthcare to educate the patients about the risk factors associated with breast cancer. There are significant numbers of patients with no cancer who may have significant risk factors for the development of breast cancer during their lifetime. Recognition of high-risk individuals and appropriate counseling may have long-lasting impact on the life of a woman and her family [39–41]. As presented in the following story from my own practice, the medical and scientific community has the serious responsibility of helping patients and their families to understand their risk and their prospects in order to make the right health choices.

She was only a 35-year-old woman recently diagnosed with breast cancer. A new mother with a 7-month-old baby girl was referred to seek a second opinion about her diagnosis and her options for therapy. During the visit, she also talked about her persistent lower back pain that had started a year ago. Imaging studies identified a lesion in her lower spine, for which no definitive cause was named. The findings were interpreted as inflammatory/reactive and were partially attributed to her pregnancy .

Upon further questioning, she talked about her mother and grandmother who had both died of breast cancer at a young age. She shared the extreme suffering of her mother, who had to undergo radiation therapy and chemotherapy following her surgery. She talked about her grandmother and how she changed from a kind and engaging grandmother to a depressed and isolated woman after her bilateral mastectomies and how she died in silence. In further discussion, it became apparent that the other members of her family had also suffered from other malignancies, including her aunt who had died from ovarian cancer .

The patient underwent risk assessment, including DNA genetic testing, which revealed the presence of breast cancer genes. The follow-up metastatic work-up, including the biopsy of the lower spine lesion, revealed extensive metastatic disease in her lungs, liver and bones. Unfortunately, she died shortly after her diagnosis of breast cancer, despite aggressive therapy .

The loss of a life to breast cancer is not a new story. There are many women who die from breast cancer every day across the globe. The sadness is that this patient could have been saved from dying at such a young age if her breast cancer had been diagnosed earlier.

This patient may have had a different outcome if she had received a clinical breast exam and screening mammography and breast MRI at an earlier age. She may have chosen not to become pregnant. Her husband and her daughter may have been spared losing her to breast cancer if she had only known about her cancer risk.

Upon a comprehensive review of her medical record, there was no mention of any family history. This missing information was probably the most important link to the delay in the diagnosis of her breast cancer. This patient had lost her mother, grandmother and her aunt to breast and ovarian cancer and yet no one had ever asked her about family history and no one had talked to her about her cancer risk and her possible options as risk-reduction modalities.

“…it is necessary for the physicians to assess patient' decision-making preferences, not only in the beginning of therapy, but over the entire course of cancer treatment.”

The most disappointing part of this story is the fact that when she was referred to a physician with a breast mass, no one took her seriously. She was led to believe that she was fine. She became pregnant with a new life growing within her while a malignant tumor was also growing rapidly within her breast. The tumor metastasized to her spine and still no one attempted to find the right answer. The story is the reality of the impact of the continued pattern of casual approach to breast healthcare among a small number of healthcare providers who still refuse to better understand the gravity of this devastating disease and to learn about new interventions in early breast cancer detection and prevention.

Advances in molecular genetic testing and increased awareness of the public about breast cancer risk factors continue to contribute to improved management of high-risk breast cancer patients. The availability of risk-reduction modalities, such as bilateral prophylactic mastectomy, bilateral oophorectomy, administration of chemopreventive agents and close surveillance programs, are the current options that have proven validity in offering better quality of life for high-risk patients. This trend, however, requires serious attention to the personal and family history of patients who refer to their physicians for medical care. This is the simplest and the most cost-effective approach to stratify individuals into low-risk versus high-risk categories [42–50].

The failure to obtain relevant personal information about a patient's risk of developing breast cancer is the first step towards failure during early breast cancer detection and prevention. Without this knowledge, the physicians will not consider referring the patient for appropriate breast cancer risk assessment. If a high-risk patient develops cancer, the failure of the physician to have informed the patient of his/her risk may lead to medical liability. It is the right of the patient to understand his/her status of cancer risk and to choose the right options on an individual basis.

“There are significant numbers of patients with no cancer who may have significant risk factors for the development of breast cancer during their lifetime.”

Aside from medical liability, it is a social and moral responsibility for physicians involved in breast healthcare to familiarize themselves with the relevant breast cancer risk factors and learn about the most effective management strategies. It is important for a physician to educate a woman who is a member of a high-risk population, such as Ashkenazi Jews, about her high risk for breast cancer. Currently, physicians of many disciplines, such as primary-care physicians, obstetricians and gynecologists, and other healthcare providers, are the first to see a patient. It remains the responsibility of the healthcare leadership to make sure that the physicians comply with the standard of care in the evaluation of high-risk patients. This is the only way that a difference in the lives of high-risk patients can be made. Understanding various breast cancer risk factors and different management options are critical for those who are involved in patient care.

Breast cancer is a major public health problem. Currently, breast cancer is associated with a favorable prognosis if detected early. A cure for breast cancer is the ultimate goal and our hope is to speed up the process. This is a difficult task that requires not only a true partnership between patients, healthcare providers and clinicians, but also depends on fundamental progress in basic and clinical research. Staying informed of the latest developments in all of the disciplines involved in the study and management of breast disease is a critical step.

Regardless of circumstances, patients often look to physicians for guidance, information and understanding. This is where access to a multi-disciplinary scientific publication and conferences can help physicians to become aware of the most recent developments to allow them to help their patients.

It is also critically important to listen to the story of each patient. If clearly heard, each account is the story of a disease with different presentations and different outcomes. These stories have always enriched our understanding of the spectrum of changes that occur in an individual both physically and psychologically. In reality, patients are the natural teachers of the scientific community, allowing us to learn about the natural course of a disease.