A synthesis of clinical recommendations and primary research for survivors of prostate or breast cancer.

Studies have documented the efficacy of cancer treatments available, specifically for patients with prostate or breast cancer, but few articles have compared prostate or breast cancer recommendations from the patient's perspective. In this article, the authors compare and contrast published clinical recommendations for advanced practice RNs who treat patients with prostate or breast cancer to qualitative studies that explore the experiences of cancer survivors. Treatment options, along with recommendations and resources, are included. The nurse clinician's role in caring for patients with prostate or breast cancer is diverse and complex, and evidence supports the role of the nurse clinician in improving patient care. Implementing findings from qualitative studies that focus on patients' perspectives in conjunction with clinical recommendations is essential when developing care plans for patients with cancer.

The advanced practice RN (APRN) provides care to a number of patients who vary in age and income, as well as in disease type and chronicity. Just as health care continues to increase in complexity, so does the role of the APRN. Therefore, the APRN must acquire a deeper, broader range of specialty skills, knowledge, and resources to effectively manage the care of this growing population. Given the aging general population and the overall increase in patients diagnosed with cancer, the APRN likely will be managing the care of cancer survivors or assuming the role of the primary care provider for some patients. The APRN is being challenged to develop the skills and knowledge necessary not only to manage the medical care of cancer survivors but also to help patients, families, and caregivers address spiritual, financial, emotional, and personal burdens.

The Institute of Medicine (IOM) has outlined the needs of patients with cancer and their families, including unmet psychosocial needs (Adler & Page, 2008). To satisfactorily meet the IOM’s recommendations and to effectively manage the care of complex and chronically ill individuals, the APRN must synthesize and apply knowledge and evidence from clinical practice, as well as from published research and clinical guidelines that focus on screening, diagnosis, treatment, and follow-up, to provide care that meets the unique needs and preferences of each patient with cancer.

Most APRNs access and apply clinical guidelines to manage the care of patients with cancer. Although guidelines are often evidence based, they may not address the personal preferences of the patient. The financial resources of the patient may not be fully discussed during treatment planning. For example, the cost of a magnetic resonance imaging scan may not be evaluated prior to diagnostic ordering. Cost-effective measures based on the patient’s financial resources may not be fully explored, and alternative measures may not be considered. In addition, certain patients may choose to pursue aggressive treatments for their cancer, whereas others, based on personal beliefs, may choose more conservative treatments. The beliefs and resources of the patient should be explored during treatment planning.

Clinical guidelines are accessible and useful to nurse clinicians in inpatient and outpatient facilities. Unfortunately, few guidelines reflect patients’ experiences. Limited information exists to help guide the care of cancer survivors from underserved and underprivileged backgrounds, many of whom may experience stressors in addition to a cancer diagnosis. For example, African American men aged 65 years or older are disproportionately affected by cancer. At the time of their initial diagnosis, these individuals often present with an advanced stage of cancer and require a greater amount of resources to effectively treat the cancer because of the late stage of the disease and their age (Jones et al., 2011). The treatment options offered to those individuals, therefore, may be more costly. According to Jones et al. (2011), the beliefs, values, and financial resources of patients should be considered in the context of their disease. Suggesting that a 70-year-old African American man with end-stage metastatic prostate cancer undergo costly, highly focused radiation treatments that have serious, unpleasant side effects may not enhance his overall quality of life. The APRN should closely assess the individual patient’s needs, beliefs, and resources to develop an effective plan of care.

Clinical recommendations may be helpful to the APRN in terms of a patient’s initial care, but they are limited in their ability to guide the APRN in developing a plan that includes the patient’s preference. In a study by Jones et al. (2011), a group of African American prostate cancer survivors and a group of African American breast cancer survivors described their illness experiences, including their difficulties and triumphs. Descriptive narratives, combined with clinical guidelines, may provide the APRN with the fundamental elements needed to develop an effective, holistic, and individualized plan of care for a patient with cancer.

Unfortunately, few studies have explored the perceptions of patients before, during, or after treatment for prostate or breast cancer, although treatment may greatly affect quality of life (Northouse, Katapodi, Song, Zhang, & Mood, 2010). Birnie and Robinson (2010) presented five main treatment options offered to patients diagnosed with localized prostate cancer: active surveillance, radical prostatectomy, external beam radiotherapy, brachytherapy, and cryotherapy. These treatments vary greatly, and their effects on the patient’s overall functioning may differ. Likewise, treatment for early-stage breast cancer may consist of surgery with or without radiation, chemotherapy, or hormone therapy. Few studies have synthesized original research data that reflects the challenges and preferences of treatment as described by the patient.

This synthesis of original research studies describing the experiences of prostate or breast cancer survivors was designed with the goal of providing insights from patients’ perspectives to enhance the APRN’s understanding of the specific challenges facing patients with cancer. The purpose of this review is to outline actual patient experiences, which can help APRNs increase the quality of care and treatment options.

Methods

This review of literature focused on locating, summarizing, and synthesizing clinical studies that outlined treatment options and recommendations for providers caring for patients with a current or past diagnosis of prostate or breast cancer. The authors selected six clinical studies that addressed clinical treatment options for prostate or breast cancer, omitting studies that focused on theoretical models to treat patients with cancer if they were not specific to prostate or breast cancer. Those recommendations were then compared to five qualitative studies that explored the experiences of prostate or breast cancer survivors, including their perceptions of cancer treatments and any related barriers or facilitators to treatment. Articles that reanalyzed original studies were not included. Clinical studies conducted from 2006–2011 were reviewed, and CINAHL® and PubMed databases were used to search for articles that included clinical recommendations and perceptions of patients with a current or past diagnosis of prostate or breast cancer. The following Medical Subject Headings terms were included: APN recommendations for prostate cancer, APN recommendations for breast cancer, prostate cancer, breast cancer, treatment, patient treatment, and patient values.

Inclusion Criteria

Inclusion criteria for the review consisted of an article’s (a) being an original research study, (b) featuring a sample in which the patients had a current or past diagnosis of prostate or breast cancer, and (c) having a publication date of 2006 or more recent and being written in English. Studies that focused on pharmacologic interventions were excluded because they were not applicable to the aim of the review. The authors reviewed and synthesized the clinical recommendations from the articles written for APRNs managing the care of patients with prostate or breast cancer diagnoses, and they also conducted a secondary analysis of data from narratives taken from participant interviews. This information, along with specific recommendations for the APRN, is summarized in Table 1; those recommendations are aligned with the components that should be included in a survivorship action plan as recommended by the Centers for Disease Control and Prevention (2004). The interviews were conducted as part of five qualitative studies describing the challenges and experiences of older African American men diagnosed with prostate cancer and African American women diagnosed with breast cancer. The authors’ analysis included obtaining and reviewing the original transcripts of participant narratives from the five studies.

TABLE 1

Perceived Needs, Challenges, and Clinical Recommendations for Patients, Families, and Clinicians

Perceived Needs and Challenges	Narrative	Narrative Source	Recommendations
Need for a trusting relationshipwith healthcare provider	“I was not really thinking about prostatecancer screening. My relatives had prostatecancer. I am going forward with it. After talkingto my doctor, he encouraged it, and I wentto the doctor.”	Jones et al., 2009a	Encourage patients to return for follow-upappointments. Actively listen to the concernsvoiced by patients and family members, andremain available to support patients and providehealthcare information.
Difficulty articulating financialneeds	“No, Humana. So now I’m using Humana,but … they take Medicare. I don’t knowexactly how to explain it. I don’t feel like I’mgetting [any] benefit out of it.”	Wenzel, Jones, Klimmek, Krumm, et al., 2012	Schedule new patients with extra time tofamiliarize them with the process of contactingMCOs, or designate office personnel toassist with new patients. Consider developinga questionnaire that asks what challengespatients have experienced and trackthese forms in a database that can also beused to document the invaluable role of theAPRN. Provide office personnel with a “cheatsheet” based on common challenges thatpatients identified in their interactions withMCOs.
Difficulty understanding thelanguage used in written correspondencewith MCOs	“No, because I don’t know who to talk to.That’s what I’m trying to find out now, soI can talk to someone that would help me,you know.”	Klimmek et al., 2010	Encourage patients to bring in letters fromMCOs during scheduled office visits so theycan receive assistance with understandingcomplex information and difficult terminology.Consider asking a nurse leader to designatecertain hours one day a week to providepatients with additional information or clarificationof difficult written information.
Difficulty obtaining authorizationfrom MCOs for diagnostics,specialists, referrals, and non-formulary medication, and alack of transparency in theauthorization process	“I put in for the VA, but I was denied….They said I didn’t qualify financially, and, theother thing, I didn’t have any service to connectthe disabilities.”	Klimmek et al., 2010	Discuss and offer alternative diagnostics ortreatments, explaining cost, benefits, andrisks to patients. Include costs covered byinsurance and costs for which the patientwould be responsible. Rather than routinelyoffering the latest or usual form of care,spend time with patients and family membersto determine personal preferences andneeds, including homeopathic treatments.
Higher co-payments for cancerproviders and medications totreat cancer or the side effectsof treatment	“The first time I went through all of thisexperience of cancer, we had insurance thatwas $15 co-pay and they [took] care of therest, and when I retired, it was a differentstory. It was a different story.”	Klimmek et al., 2010	Become familiar with and educate all officeand medical personnel about the AmericanCancer Society’s costs of cancer care document.Provide patients with information onthe topic of expected side effects of cancertreatments and nonpharmacologic interventionswhile patients are waiting to be seen,giving them a chance to read the materialand ask questions. Collaborate with specialiststo develop a plan of care in which theAPRN can prescribe and order certain treatmentsto alleviate costs.
Unexplained fees related tocancer treatment and frustrationwith billing errors	“I was doing really well before I turned 65.When I turned 65 … they dropped the ballon everything: ‘You got to pay for this, yougot to pay for that.’ My medicine went up.”	Klimmek et al., 2010	Provide all patients with a referral to the accountmanager and billing office specialist.Refer them to appropriate legal websites.
Psychosocial problems associatedwith cancer diagnosis	“[There] used to be a time I had to go to thebathroom so many times a night … aboutfour or five times a night, sometimes morethan that.” [man with prostate cancer]“All I wanted to do was lay down, lay down,lay down. Forget about the food—just laydown. It went on for a long time.” [womanwith breast cancer]	Jones et al., 2009a	Provide appropriate counselor and group referrals.Consider creating a holistic treatmentplan that is individually tailored to meet theneeds of each patient. Include a communitysupport person in the planning.
Geographic location	“The only problem … was transportation.See, Medicare wouldn’t pay for my transportation.Because, see, I was under Medicare,not Medicaid. Medicare won’t pay for transportation.”	Jones et al., 2011	Determine the geographic location in whichthe patient resides. Discuss the availability oftransportation services, clinics, pharmacies,and CHWs to alleviate the burden of gettingto appointments and picking up medications.
Need for greater health andcancer-specific education	“We really don’t get told the truth, exactlywhat’s what…. I think it’s … just one ofthe things that we don’t get a real true [diagnosis]and be told the truth in all cases.”“Maybe even though there are options,and, of course, you, as the patient, have theultimate decision-making ability, but peoplemay steer you in certain directions.”	Jones et al., 2009a	Mentor clinical nurses in the workplace aseducational group leaders. Offer a varietyof seminars on topics such as nutrition,identifying secondary illnesses not related tothe primary cancer, and secondary cancersassociated with specific cancers (includingprevention, along with signs and symptoms).Implement a model that includes the communitysupport person for the patient in theeducation.
Need for spiritual support	“The church, they brought me money; theybrought all types of goodies; they never letyou know that they’re not there.”	Jones et al., 2009a	Offer spiritual services to outpatients whenthey present for office visits or by appointment,as opposed to only during inpatienttreatment. Consider designating a room as aspiritual or meditation area for patients andcommunity support people.
Lack of available support	“I have two sister-in-laws that came rightregular, and my nieces, they came andcleaned the house for me; that was reallybeautiful. They did a lot for me.”	Jones et al., 2011	Embrace a model of collaboration that includesspecialists, social workers, financialpersonnel, family members, community supportpeople, and CHWs.
Assistance identifying and articulatingfinancial needs	“I know this man used to live not too farfrom me. These people would come and cleanhis house and make him make sure he tooka bath; they were all men. They would comeup—a group of men would come out to hishouse, clean his house, and straighten it up,and, you know, keep his kitchen straight, andcook him a meal, and make sure he [took]a bath, but I don’t know whether they werecalled that or not. A group of people used tocome to his house.”	Klimmek et al., 2010	Encourage the CHW or community supportperson to attend office visits, procedures, ortreatments with the patient and to preparenotes or questions prior to the appointment.
Need for a social support personin the community to assist withbasic needs	“The technicians, when I went down thereand the music is playing in there and everything,and they said, ‘Do you like the musicplaying?’ I said, ‘Not really.’ They said, ‘Well,you can bring some of your own.’ I broughtsome CDs in there, and they started playingthem, and they liked them.”	Jones et al., 2011	Assess the patient’s support system prior todischarge or during initial visit.
Need to address economic disadvantages	“My children [were] there for me becausethey had to buy them high-priced pills. Ididn’t have no money to get them with. Ididn’t know how I was going to make it,but they were there, and they’d bring moneyfrom here and there or whatever, trying tohelp me. They’re still trying to help me withthat bill.”	Jones et al., 2011	Provide patients with a list of Internet sitesand phone numbers related to legal or financialinformation. Consider having a computerthat can be used by patients. Providepatients with time slots to use the computerto increase independence and to accessresources that address specific concerns. Networkwith social workers and agencies thatoffer financial support to patients in need.
Internal and community resourcesrecognized as a sourceof strength	“I think the first important person to me wasmy wife because we sat down and discussedit. And equally important was the doctor.Dr. — was very, very encouraging from dayone [because of] his explanation about thetreatment.”	Jones et al., 2011	Familiarize yourself and the treatment teamwith available CHW resources and otherresources available to the patient at homeor in the community, and make contact withthe agency or relevant person prior to thepatient’s departure.

APRN—advanced practice RN; CHW—community health worker; MCO—managed care organization

The primary studies included in this synthesis were guided by phenomenologic qualitative methodology (Cohen, Kahn, & Steeves, 2000). These studies involved semistructured interviews with participants who had been diagnosed with prostate or breast cancer. The phenomenologic methodology used in the primary research was based on the concept that meaning is derived by participants through a process of narrative construction. The methods of analysis are clearly described by the investigators in each of the respective qualitative studies (Jones et al., 2011; Klimmek, Snow, & Wenzel, 2010).

Results

The authors’ review of recently published guidelines for APRNs who treat patients with prostate or breast cancer confirmed that guidelines for survivors of cancer in regard to cancer screening, complications, and recommendations for lifestyle modifications are readily available. Meta-analyses regarding treatment-related mortality among patients with prostate or breast cancer are available for review (Newman et al., 2006). Randomized, controlled trials to determine the overall risk of fatal adverse events associated with different treatment modalities are numerous but do not often include the perspective of the patient. However, many do include physical side effects related to treatment. These studies are often large and offer detailed statistical analyses, yet little patient perspective is available to a nurse clinician. For example, Ranpura, Hapani, and Wu (2011) synthesized data examining treatment-related mortality among 10,217 patients with cancer. Although few articles outlined the negative impact that treatment may have on a patient’s quality of life, Carter, Bryant-Lukosius, DiCenso, Blythe, and Neville (2011) explored the supportive care needs of men in Canada with advanced prostate cancer (N = 29). The researchers concluded that nurses play an important role in addressing the needs of patients; they are fundamental in providing emotional support and the information necessary to cope with physical problems related to treatment (i.e., sexual and urinary function). A nurse clinician’s increased understanding of what type of emotional and social support patients need, along with a willingness to provide guidance for treatment, may optimize patients’ overall quality of life.

Studies (Kim, 2007; Klimmek et al., 2010; Wenzel, Jones, Klimmek, Krumm, et al., 2012; Wenzel, Jones, Klimmek, Szanton, & Krumm, 2012) have documented the burden of financial stress on the cancer survivor and have also examined the association between high financial burden and decreased chance of cancer survival (Ward et al., 2008). However, few of these studies have outlined resources that APRNs may use to assist patients who experience financial challenges.

Using data from semistructured interviews with patients undergoing cancer diagnosis and treatment, Klimmek et al. (2010) described the challenges and stress experienced by patients with breast cancer who were dealing with managed care organizations (MCOs) during treatment and early follow-up. The challenges were grouped into five MCO-related tasks: (a) interacting with MCOs, (b) understanding written information from MCOs, (c) obtaining authorizations, (d) paying bills and planning for the costs of care, and (e) obtaining assistance with MCO-related tasks (Klimmek et al., 2010). The recommendations for nursing assessment and intervention were targeted toward an audience of oncology nurse clinicians, but they also contained essential information for practicing APRNs who care for patients with cancer. For example, Klimmek et al. (2010) found that patients had trouble understanding written information from MCOs. This challenge emphasizes the need for practitioners to spend extra time with each patient and his or her family to explain complex terminology and to be available to provide answers for questions that may arise. In fact, the findings of Klimmek et al. (2010) suggest that the APRN may need to include a community support person or community health worker (CHW) as part of the treatment team to facilitate navigation of the insurance and healthcare systems. A community support person can also assist patients with tasks such as driving to appointments, whereas a CHW can assist with their health-related needs, including administering medication.

Themes

Jones et al. (2011) described the experiences of urban and rural African Americans who had undergone prostate cancer treatment and reported findings similar to those in the breast cancer study by Klimmek et al. (2010). Four themes emerged in the study by Jones et al. (2011): (a) the need for greater health and cancer-specific education, (b) the importance of faith and spirituality, (c) the availability of support, and (d) the difficulty with identifying and articulating financial needs. Jones et al. (2011) emphasized the need for additional support of patients with prostate cancer to facilitate learning about healthcare preservation and management and healthcare navigation.

The overarching theme captured in both studies was cancer survivors’ need for increased support to enhance the continuity of care and to decrease the overall burden of the cancer diagnosis. Themes that emerged also highlighted the preferences and needs of African American cancer survivors and their family members. Figure 1 presents a list of online resources with information relevant to nurse clinicians and other providers of care who work with patients diagnosed with prostate or breast cancer. Websites that address the financial and legal implications of cancer costs and insurance burdens are also included. These resources are organized into five categories: (a) patient, family, and provider relationship resources, (b) cancer care financial and legal resources, (c) need for greater health and cancer-specific information, (d) formal and informal social networks, and (e) other resources.

FIGURE 1

Online Resources for Patients With Prostate or Breast Cancer

Discussion

Many of the reviewed studies included recommendations for the treatment of prostate and breast cancer. The current review compares clinical recommendations to findings from five qualitative studies that explored the values and beliefs of patients who had received a diagnosis of prostate or breast cancer. By outlining patients’ perspectives in regard to what treatment should include and revealing the challenges that patients face, this review also highlights the importance of the nurse’s role in treatment.

Few studies provided clinical recommendations based on diagnosis, treatment, patient preferences, and patient resources. A treatment plan should be based on the prognosis of the disease and the values and resources of the patient. The resources available to each patient vary, and the APRN should explore them prior to making treatment recommendations or developing a plan of care for the patient. APRNs should collaborate with the treatment team, the patient, and the patient’s family and friends to create a plan of care that is suitable for each patient. To achieve optimal results, the nurse clinician and the APRN must be actively involved in the patient’s care.

Limitations

This review has several limitations, as does the comparison of clinical recommendations and qualitative research. First, the patient populations in the clinical studies were not well described and may not reflect beliefs and values similar to participants in the research-based study. A limited number of clinical trials focused solely on African Americans’ perspectives related to cancer treatments; therefore, a need exists for further clinical research with similar populations of patients. Those findings can then be compared to qualitative studies with African American participants. In addition, the number of participants in the qualitative study was limited. Future studies that focus on the treatment experiences of patients with cancer should have a greater number of participants in multiple geographic settings. Doing so would strengthen the findings for a more generalizable representation.

Implications for Nursing

In a time of increasing patient workloads and ongoing plans for healthcare reform in the United States, APRNs may have increasing difficulty committing the necessary time to exploring complex cancer-related healthcare needs with patients. Cancer survivors, who are often living with other chronic diseases, require extra support and resources. Certain individuals face additional barriers, such as limited education and finances, along with an overall lack of trust in healthcare providers—all of which may further delay or hinder treatment (Jones, Steeves, & Williams, 2009a, 2009b). Understanding the complexities and concerns of individuals who are diagnosed with cancer can prepare APRNs to effectively address complex issues faced by patients. A more in-depth understanding will allow APRNs to use their time and energy more efficiently while decreasing organizational and patient costs.

From the authors’ review of recently published studies that have focused on patients’ perceptions of challenges associated with cancer diagnosis, the role of the APRN goes far beyond prevention, screening, and treatment, and it should include preparing a customized plan of care for each patient in conjunction with evidence-based clinical guidelines. In addition, the support resources in this article can be used to provide patient education regarding financial concerns and overall care.