Breast Cancer Patient Empowerment
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Breast cancer is the single most common cancer in women in the United States (Centers for Disease Control and Prevention [CDC], 2010). The most recent data collected in 2006 revealed that 191,410 women were diagnosed with and 40,820 women died from breast cancer that year (CDC, 2010). Based on corollary census data, this translates to an incidence rate of 119.3 per 100,000 women and a death rate of 23.4 per 100,000 women overall (CDC, 2010). As it stands, breast cancer is the leading cause of cancer death in Hispanic women and is the second leading cause of cancer death in all other ethnic groups (CDC, 2010). Taken alone, this would make breast cancer one of the top ten killers of women in the United States overall (CDC, 2010).
As is the case with all cancers, the diagnosis, treatment, and recovery from breast cancer forms a continuum of care commonly referred to as “the cancer journey”. Because cancer survivors run a constant risk of future relapse, a diagnosis of breast cancer necessitates a patient's continuous contact with the healthcare system for the rest of their lives. While the physical execution of a particular treatment may lie under the purview of the health professional, the breast cancer journey necessitates active participation from the patient themselves. A self-reported measure of active self-determination is often referred to as the “locus of control” and lies at the core of a patient's quality of life.
Not surprisingly, a diagnosis of breast cancer carries with it a fear of death, elevated anxiety levels, and a higher incidence of depression (Chintamani et al., 2011). Over the course of the cancer journey these negative affects may rise and fall with treatment progress and setbacks (Chintamani et al., 2011). Indeed, positive response to chemotherapy, despite its side effects, has been inversely correlated to depression in breast cancer patients and may serve as a variable in determining the psychological status of patients (Chintamani et al., 2011). Likewise, it has been found that reactions to cancer-related stress have significant ethnic and racial components and may vary widely across cultures (Chintamani et al., 2011).
The timing of these psychological maladies could not be worse, as the cancer sufferer must wade through and process complicated diagnoses, treatment options, and treatment regimens on the long road to remission. As an instructive example, the staging of breast cancer, which predicts survival rates and determines treatment options for the patient, involves medical variables such as tumor size and nodal pathological status and complicated biological factors such as estrogen receptor status, cathespin D levels, and urokinase plasminogen activator inhibitor-1 and thymidine kinase gene expression (Mazouni et al., 2011). Understandably, the breast cancer patient runs the risk of feeling helpless in the face of such an arduous journey ahead. Indeed, recently diagnosed breast cancer patients with high self-reported levels of helplessness, depression, and anxiety were found to score poorly on measures of coping and had a severely diminished quality of life overall (Karakoyun-Celik et al., 2010).
Empowerment and Shared Decision Making
Because of this, researchers and healthcare professionals have begun to examine all of the factors that contribute to a patient's active participation in and successful completion of the cancer journey, beyond the technical execution of the practitioner. An important predictor of this success involves the empowerment of the patient while on the journey.
One such concept that has emerged as a means to this end is shared decision making (SDM). SDM is an ideal, which seeks to include the patient and combat the medicalization and social control of our modern healthcare system. Indeed, in a quantitative survey of cancer patients, almost all participants preferred treatment decisions to be the outcome of a shared process (Pieterse, Baas-Thijssen, Marijnen,& Stiggelbout, 2008). However, there is some disagreement between clinicians and cancer patients on the means and goals of such SDM. While clinicians viewed patient participation more often as reaching agreement on treatment options, patients more often defined it exclusively as being informed (Pieterse, Baas-Thijssen, Marijnen,& Stiggelbout, 2008). Although most clinicians believe not all patients are able to participate in this decision making, most patients beleive that clinicians were not always able to weigh the pros and cons of treatment for patients, especially where the quality of life was concerned (Pieterse, Baas-Thijssen, Marijnen,& Stiggelbout, 2008).
With applications for any disease, empowerment and SDM have been primarily studied in chronic conditions which require extensive decision making on the part of the patient, with a particular focus on cancer. As such, empowerment and SDM may ultimately incorporate several fields of study that have each been found to affect positive quality of life changes in patients and increase their involvement during the cancer journey. These include interaction and communication with healthcare professionals, patient support networks, patient education, and complementary and alternative medicine.
Patient-Provider Interaction and Communication
While on the cancer journey, the patient will obviously be partnered with the healthcare system and its professionals for the foreseeable future. This partnership extends beyond the actual cancer treatment and informs how the patient cares for their self. Healthcare providers are active coaches in a breast cancer patient's self-care, encouraging them to conserve energy, engage in relationships, and maintain a positive outlook by suggesting activities that help patients cope, adapt, and manage symptoms during and after treatment (Seegers et al., 1998).
A survey of cancer survivors revealed that the most frequently unmet needs during treatment included the need for a case-manager to coordinate care and the need for communication between treating doctors (Lobb et al., 2009). In the recovery phase of their cancer journey, the same survivors most frequently unmet needs involved preventing recurrence and managing the fear of recurrence (Lobb et al., 2009). While concrete medical concerns are indeed important, additional studies have also found that talking with healthcare professionals about existential issues such as hope and suffering made patients feel that they were part of a trustful relationship and a healing experience overall (Benzein & Saveman, 2008). This in turn gave them the opportunity to unburden themselves, as well as to learn and find new strategies for managing daily life with cancer (Benzein & Saveman, 2008). What is agreed upon, is that clinicians should acknowledge the legitimacy of patients' values, especially if they hope to empower and involve them in their treatment (Pieterse, Baas-Thijssen, Marijnen,& Stiggelbout, 2008).
Patient-provider interaction and communication also has an obvious effect on the effectiveness and retention of information following patient education. Studies have shown that both patients and professionals experience insufficient exploration of the patients' personal situation and individual information needs (Posma, van Weert, Jansen, & Bensing, 2009). In this regard, patients have emphasized the importance of sensitive communication by showing empathy and emotional support throughout the continuum of cancer care (Posma, van Weert, Jansen, & Bensing, 2009). Moreover, this communication demands that healthcare providers look beyond the patient to engage relatives and encourage them to ask questions as part of the healing process (Posma, van Weert, Jansen, & Bensing, 2009).
As such, the importance of effective communication skills to sustain a cancer patient's quality of life and their satisfaction with healthcare professionals is well documented (Fukui et al., 2010). To this end, the development and training of patient communication skills is now a cornerstone of the education of healthcare professionals. With advances in cancer research, the importance of such training has only increased, as the complexity of communicated messages has only increased and may be increasingly lost on individuals in lower socioeconomic groups (Goldman et al., 2008). Such training programs look beyond biomedical information, and include skills such as responding to emotional cues, and reducing blocking behaviors that discourage a patient from opening up to their provider (Butow et al., 2008). Indeed, these are skills to be developed over a lifetime, as the fields of breast cancer research and patient facilitation are constantly developing. A recent study of oncology residents, revealed that only 56% of the participants reached a basic level of core competency in communication skills after a week-long training program (Bylund et al., 2009). Oncologists that attended more training modules in this area also showed the most improvement in communication skills with cancer patients (Bylund et al., 2010). Fittingly, female oncologists have also demonstrated far greater communication skills with breast cancer patients than their male counterparts (Bylund et al., 2010).
As a means to facilitate patient empowerment and SDM, a new profession has arisen in oncology nursing. Called patient navigators, these health professionals can address insurance, financial, and logistical issues such as transportation, appointment scheduling, and child or elder care (Schwaderer & Itano, 2007). They can also provide understandable health education that may lessen fears of cancer diagnosis and treatment (Schwaderer & Itano, 2007). Preliminary studies have shown that patient navigator programs have increased mammogram screening rates, improved response times to diagnosis after a positive screen, and reduced anxiety in women with breast cancer across racial, ethnic, and socioeconomic lines (Ferrante, Chen, & Kim, 2008). As such, these navigator programs have great potential to enhance cancer care by reaching underserved populations and opening the door for better outcomes.
Social Support Networks
Beyond the patient-provider dyad, the cancer patient also brings with them their social support network. This support network may include the family, friends, coworkers, and co-worshipers of the breast cancer patient. This network has an obvious function to serve as direct caregivers for the weakened patient. However, by facing cancer with the patient, it is also theorized that members of the network vicariously substitute themselves for the patient, relieving their psychological distress in a phenomenon known as the “buffering effect” (Hasson-Ohayon et al., 2010). This buffering effect also has physiological implications, as studies have shown that high levels of family support are linked with low levels of anxiety in the breast cancer patient and significantly reduced severities of anticipatory and post-treatment nausea during chemotherapy (Kim & Morrow, 2007).
Across the breast cancer patient population, partners, and in many instances children and other family members or friends, provide support at the core of this network (Maly et al., 2005). In older patients, the core of this network is most frequently the spouse or partner, followed by adult children; while in younger patients, the core of this network is most frequently adult siblings or close friends (Ashida et al., 2009). Maturity and adjustment are both important psychological predictors for the level of support received from partners, children, and friends; subsequent buffering from anxiety and depression; and the breast cancer patient's mental health overall (Maly et al., 2005). While religious-based support persons can be effective members of the support network, religious-based support itself has been shown to have a mixed effect on psychological distress levels in the patient and other core support members (Hasson-Ohayon et al., 2010).
Due to stresses inherent to the breast cancer journey, the composition of a patient's support network may change over time as members succumb to pressure. Age of the patient is a predictor of this volatility, with younger patients more likely to have network members drop out and change than older patients, whose networks are more stable over time (Ashida et al., 2009). However, those members who provide most support at the core of the group are the least likely to leave a cancer patient's network, regardless of self-reported stress levels (Ashida et al., 2009).
Indeed, the spouses of breast cancer patients have reported higher levels of psychological distress on self-reported inventories of global distress, depression, and anxiety than patients (Hasson-Ohayon et al., 2010). While both patients and spouses reported similar levels of mutual support, spouses themselves have reported lower levels of support from family and friends (Hasson-Ohayon et al., 2010). Likewise, a survey of breast cancer patients overwhelmingly reported that their physicians rarely asked their significant others how they were coping or referred them to a support group, even though both behaviors were rated as extremely helpful (Maly et al., 2005).
As such, perceived family support has been found to be the key factor in preventing psychological distress in patient-spouse couples (Baider et al., 2003). However, while support from partners and family was most important to the breast cancer patient, support from friends was most important to their male partners (Hasson-Ohayon et al., 2010). These findings give credence to the notion that spouses and other support members must be care receivers, with support networks of their own, in addition to their role as caregivers (Hasson-Ohayon et al., 2010).
It is also important to note that support sources and their impact on a patient's mental health vary considerably between racial and ethnic groups (Maly et al., 2005) For racial and ethnic minorities, support from, and adjustment of, adult children assumed particular importance (Maly et al., 2005). Taken together, these findings suggest the importance of a culturally sensitive provision of care by clinicians. Likewise, a consideration of education levels in support networks is also necessary as low literacy in family support groups has been linked to higher levels of depression in the breast cancer patient and their family-based caregivers (Chintamani et al., 2011).
For the healthcare professional, identifying important network members and facilitating positive social interactions between them and the breast cancer patient is beneficial to the long-term health of these networks overall (Ashida et al., 2009). These mutually-supported networks have a direct and beneficial impact on the cancer patient's physical health during treatment (Kim & Morrow, 2007). Once in cancer recovery, a good support network is also a key factor in the establishment of both healthy self-care behaviors and a healthy lifestyle overall (Seegers et al., 1998).
Following a cancer diagnosis, after the initial shock wears off and the grieving process has begun, there is understandably a high demand for any and all information about the disease. Breast cancer patient have consistently expressed a high need for information to help them cope with their disease and assist in their treatment decision making (Wong et al., 2011). Satisfying these informational needs has also been shown to increase perceptions of control, decrease levels of distress, increase psychological well-being, and improve patient outcomes overall (Wong et al., 2011). As a corollary, low patient literacy, resulting from diminished patient education levels overall, has been linked to higher levels of self-reported depression in breast cancer patients (Chintamani et al., 2011).
It seems logical that the cancer patient prefers more information than not enough, and indeed randomized trials show that this is true (Jones et al., 2006). However, the same studies also revealed that personalized information pertaining to that patient's specific cancer diagnosis was far more preferable than large amounts of general information (Jones et al., 2006). Indeed, by personalizing educational material to include the patient's name, diagnosis, and lab results, the cancer patient was far more likely to share this information with the confidants in their support network and partner with them in the educational process (Jones et al., 2006).
The education of cancer patients, like any other subjects, occurs in a wide variety of forms and by a wide variety of materials. A study of women after breast cancer surgery revealed that a multidisciplinary approach, with variegated formats from a wide variety of healthcare professions, increased their physical and functional well-being more than women who were consulted by their oncologist in a traditional manner (Koinberg, Langius-Eklöf, Holmberg, & Fridlund, 2006). Furthermore, while women with a traditional follow up from their physician had improved functional well-being, their social and family well-being was shown to decrease over time (Koinberg, Langius-Eklöf, Holmberg, & Fridlund, 2006).
Some patient education forms include consultation with a healthcare professional, written materials, and internet websites, to name a few. Ultimately, most breast cancer patients have been shown to utilize multiple forms and types of educational sources (Beesley et al., 2010). Traditionally, a patient's primary educational source is verbal communication with the healthcare professional. However, studies have shown that written information is generally understood to a greater degree than verbal information (Beaver et al., 2009). Likewise, interactive forms of educational tools are also finding increase use. One such form of patient education material is the interactive nomogram, on which researchers translate a myriad of biomedical factors into a patient-friendly interactive chart that can be used to predict treatment regimens, prognosis, and survival rates (Mazouni et al., 2011). Studies have also shown that the internet is increasingly preferred by cancer patients for their informational needs, as it has the advantages of convenience, privacy, and accessibility, when compared to traditional mechanisms of information provision (Avery & Braunack-Mayer, 2007). However, without a healthcare professional present, the finding of internet information can be confusing and will ultimately require the cancer patient to have questions answered in a more personal manner (Avery & Braunack-Mayer, 2007).
As such, newer educational forms and materials are becoming more interactive in order to aid in decision making. Mixed views from breast cancer patients about presentation styles suggest decision aids would be most effective with a user-selected range of formats (Rapport et al., 2006). These women reported variable preferences for different types of decision aids and mixed emotions, indicating the sensitivity of raising issues in decision support tools, and a lack of consensus over the most appropriate aid (Rapport et al., 2006). Because of these and other findings, decision aid development should be informed by users and should meet the needs of those concerned. If not, it has been found that without such sensitivity, patients will continue to search for information from a variety of sources of undetermined quality (Rapport et al., 2006).
A final important consideration to note is the fact that most breast cancer patients are currently of an older generation when regarding their familiarity with education technology forms. Likewise older cancer patients have more difficulty processing and remembering information than younger ones (Posma, van Weert, Jansen, & Bensing, 2009). A trustful environment appears to be a prerequisite for reflection of older patients on the information provided and individualized information is essential to enhance memory of information (Posma, van Weert, Jansen, & Bensing, 2009). Across the generations however, four themes hold true in both patient education and patient-provider interaction: promotion of a sense of illness ownership, of patient-driven communication, of personalized support, and of mutual trust (Winkelman, Leonard, & Rossos, 2005).
Complementary and Alternative Medicine
Outside of the allopathic system, cancer patients have increasingly taken personal control by augmenting their care with treatments from complementary and alternative medicine (CAM). Our culture tends to view Western medicine as the traditional or mainstream treatment, while alternative medicines not involving hospitals and doctors is seen as complementary (Wanchai, Armer, & Stewart, 2010). Self-reported use of CAM has been shown to significantly increase following a cancer diagnosis, and breast cancer survivors are the heaviest users among cancer survivors, with self-reported CAM usage increasing over time, along with improved diet and increased physical activity (Saquib et al., 2011; Davis et al., 2010).
This is somewhat surprising in our culture, considering there is a relative dearth of Western studies showing that CAM has altered the disease progression of breast cancer (Wanchai, Armer, & Stewart, [R] 2010). However, patient interviews have revealed that perceived outcomes from alternative therapies involve positive effects: coping with disease and treatment, holistic care, and emotional support (Wanchai, Armer, & Stewart, 2010). This stands in contrast to Western medicine, where patients perceived mostly the negative things that they are forced to suffer, sometimes as a test from God (Wanchai, Armer, & Stewart, 2010). Qualitative study has shown that the decision to choose CAM treatment is based on kinship, social, economical, educational, and belief factors (Wanchai, Armer, & Stewart, 2010). The sources of information about CAM use for women with breast cancer varies widely, including family, friends, mass media, healthcare providers, CAM providers, and self-help groups (Wanchai, Armer, & Stewart, [R] 2010).
After a breast cancer diagnosis, it has been found that up to 50% of women used CAM as part of their cancer treatment specifically, while up to 80% have used it as means to improve their general health overall (Saquib et al., 2011). A survey of breast cancer patients using CAM revealed that 53.2% used it to boost the immune system, 46.8% to promote general physical and emotional health, and 37.7% to prevent relapse (Kang et al., 2011). In spite of these numbers, large proportions (70.4%) of CAM users do not discuss their CAM use with their physicians (Kang et al., 2011).
Biologically based practices were noted as the types of CAM most used by women with breast cancer, followed by mind-body medicine, whole medical systems, and energy medicine (Wanchai, Armer, & Stewart, [R] 2010). The most frequently reported specific practices for cancer purposes include visual imagery, spiritual healing, and meditation (Saquib et al., 2011). CAM use, defined as consulting a CAM practitioner and regular use, was found to be significantly related to younger age, higher education, increased fruit and vegetable intake, and lower body mass index in breast cancer patients (Saquib et al., 2011). Additional predictors of CAM use include single marital status, advanced breast cancer stage, the coexistence of other illnesses, higher income, involvement in a support group, having health insurance coverage for CAM, and having a higher baseline quality of life at time of diagnosis (Kang et al., 2011; Wanchai, Armer, & Stewart, [R] 2010; Davis et al., 2010).
Racial and ethnic backgrounds are also key cultural factors in determining the form of CAM practiced. A survey of African American breast cancer survivors revealed that 68.2% use multivitamins and herbal supplements, including garlic, gingko, and Echinacea (Bright-Gbebry, 2011), while Korean breast cancer patients were more likely to choose exercise and meditation-based therapies before herbal use (Kang et al., 2011).
Considering that a significant number of patients with breast cancer have used CAM, health care providers should be aware of the variety of CAM methods and their patients' CAM uses for a proper and more comprehensive management of breast cancer (Kang et al., 2011). Open communication about CAM use helps to ensure that safe and holistic care is provided and practiced (Wanchai, Armer, & Stewart, [R] 2010).
While each of these components has been studied individually throughout the cancer journey, a comprehensive attempt to survey all of these factors together may provide us with a clearer picture of how to evaluate empowerment and SDM in the breast cancer patient. Qualitative study and interview with the breast cancer patient may elucidate the modalities that inform on the interconnectedness of these factors and goals.
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