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Breast Cancer Survivor Symptoms: A Comparison of Physicians’ Consultation Records and Nurse-Led Survivorship Care Plans

Christina Kozul
Lesley Stafford
Ruth Little
Chad Bousman
Allan Park
Kerry Shanahan
G. Bruce Mann
CJON 2020, 24(3), E34-E42 DOI: 10.1188/20.CJON.E34-E42

Background: Survivorship care plans (SCPs) have been used to address ongoing health problems associated with the diagnosis and treatment of early-stage breast cancer.

Objectives: The aim of this article was to determine whether nurse-led consultations using SCPs, as compared with a standard medical consultation, identify more side effects and supportive care needs and lead to appropriate referral patterns.

Methods: The study audited 160 retrospective medical clinic and nursing SCP records in a sample of patients receiving treatment for early-stage breast cancer at a tertiary-level breast service in Australia.

Findings: Breast care nurses (BCNs) undertaking SCPs at a nurse-led consultation were significantly more likely than physicians to record symptoms related to menopausal/hormonal therapy, psychosocial/mental health, lifestyle, bone health, and sexuality. BCNs were also significantly more likely to refer patients for concerns related to psychosocial/mental health, lifestyle, and sexuality.

Advances in breast cancer detection and treatment have resulted in improved cure rates and prolonged survival, leading to a growing number of survivors (Miller et al., 2016). Despite these advances, many women with early-stage breast cancer have ongoing symptoms and health problems associated with their diagnosis and treatment (DeGuzman et al., 2017; Fallowfield & Jenkins, 2015; Zdenkowski et al., 2016). Identifying and managing these symptoms can help patients maximize their quality of life (Zdenkowski et al., 2016). One tool being used to help achieve this is the survivorship care plan (SCP) (Post et al., 2017).

SCPs were first recommended by the Institute of Medicine (IOM) to improve health outcomes for cancer survivors (Hewitt et al., 2006). The purpose of SCPs is to provide a comprehensive summary of treatment, a follow-up schedule, and supportive care resources; the IOM recommended that SCPs be written by the principal providers who coordinate oncology treatment (Hewitt et al., 2006). SCPs are considered a potentially powerful tool and are used by patients with cancer and treating teams to deal with survivorship issues (Soloe et al., 2019). SCPs have been widely implemented, despite limited evaluation of their effectiveness (Ivanics et al., 2019; Jacobsen et al., 2018; Klemanski et al., 2016). Limited evidence confirming effectiveness suggests that breast cancer survivors are highly satisfied with and value SCPs (Palmer et al., 2015); however, further well-designed studies are required.

SCPs remain a central part of survivorship care (Post et al., 2017). Optimization of SCPs is required to maximize their potential benefits (Post et al., 2017), but anecdotal reports suggest this may be challenging in the Australian tertiary hospital setting. When first established, SCPs were to be coordinated and managed by the physician (Hewitt et al., 2006). However, clinic medical appointments focus on medical issues, including disease recurrence. That focus, combined with high patient volumes, may result in limited time to cover survivorship care issues. Therefore, physicians may not be the optimal practitioners to coordinate and manage SCPs. Nursing staff have been important providers of survivorship care, and, because of increasing workforce strain on oncologists, their role in this field is likely to grow (Post et al., 2017).

Although there is a dearth of research on the resources needed to undertake SCPs, a systematic review of SCP outcomes by Brennan et al. (2014) identified intensive resource requirements. The review noted that the development of an SCP takes a minimum of one hour (maximum of four hours), irrespective of the healthcare provider completing the plan (Brennan et al., 2014). The reviewers suggested that the SCP workload could be shared with other healthcare providers to reduce the burden on oncologists (Brennan et al., 2014). Nurses have become significant providers of care; studies have revealed that, when providing survivorship care, advanced practice nurses coordinating care can improve patients’ quality of life and satisfaction and increase financial reimbursement to the healthcare system (Spears et al., 2017). However, studies of SCPs have revealed lack of standardization in the delivery of survivorship care (Brennan et al., 2014).

This study of patients treated for early-stage breast cancer determined whether nurse-led consultations using SCPs, as compared with physicians’ standard medical consultation, will identify more side effects and supportive care needs and lead to appropriate referral patterns.

Methods

In 2012, a variation to the IOM recommendations was introduced at a tertiary hospital in metropolitan Melbourne for patients with early-stage breast cancer. This model was designed so that breast care nurses (BCNs) at a nurse-led consultation would complete the SCPs. At this nurse-led consultation, patients with early-stage breast cancer are invited to a consultation with a BCN about 6 to 12 months after their diagnosis. In Australia, BCNs are RNs who work as specialist BCNs and do not have prescribing rights. Early-stage breast cancer can be diagnosed via BreastScreen (Australia’s population-based mammography screening program) or investigations initiated because of breast symptom detection (e.g., mass detected, skin and nipple changes).

At the extended (one-hour) nurse-led consultations, a wide range of issues are explored, including side effects, fears about recurrence, adherence to medication, and difficulties with relationships, exercise, and fertility. This nurse-led consultation uses three validated patient self-report questionnaires: the National Comprehensive Cancer Network (2020) Distress Thermometer; the FACT-B+4 (version 4.0) (for patients with lymphedema, to be used with the Functional Assessment of Cancer Therapy–Breast) (Hahn et al., 2015); and the Menopause Rating Scale (Heinemann et al., 2004). Before the appointment, to guide discussion during the consultation, the patient completes the three questionnaires and the nurse-led consultation care plan template. All discussions (between the BCN and patient) and outcomes are documented in the SCP. Any significant problems are flagged in the SCP and later reviewed with the patient’s physician (and allied health team, if required). Appropriate referrals are usually initiated by BCNs, but in some cases, a physician must complete the referral. The SCP that is generated typically includes a shared-care model with all relevant clinicians involved (usually the treating specialist medical practitioner, BCN, and family physician). Separate from this consultation, patients have outpatient medical review appointments with their oncologist or surgeon, where symptoms or problems related to their treatment may be raised (this appointment does not use self-report questionnaires or prompt sheets). This consultation is documented by the physician in the outpatient medical notes. BCN and medical consultations are billed as public outpatient appointments at no cost to the patient.

Sample

This study was a retrospective audit of women with early-stage breast cancer who received treatment through the public health system at the Royal Melbourne Hospital in Australia. Patients were identified using the breast service database, in which all patient details are recorded. Inclusion criteria were as follows: being aged older than 18 years, being of the female sex, having undergone surgical treatment (wide local excision or mastectomy), and having attended a nurse-led consultation survivorship appointment and a medical appointment (prior to the nurse-led consultation appointment). A sample size estimation calculated that 130 participants would give 80% power to detect a medium effect size (0.3). Ethics approval was granted by the Melbourne Health Human Research Ethics Committee. The committee waived the need to obtain consent because the project was deemed low risk. All data were collected retrospectively with no direct patient involvement, and all patient information was deidentified with coded data stored on a password-protected computer.

Data Collection

Information was retrieved from outpatient medical clinic documentation and nursing survivorship planning documents. Baseline data collected included the following:

•  Age at diagnosis

•  Medical comorbidities (categorized using the American Society of Anesthesiologists [ASA, 2019] physical classification system: no comorbidities [ASA I], mild systemic disease [ASA II], and severe systemic disease [ASA III])

•  Menopausal status at diagnosis

•  Family history of breast cancer

•  Psychological history

•  Pathology details (including estrogen receptor [ER] and progesterone receptor [PR] status)

•  American Joint Committee on Cancer (AJCC) staging (Amin et al., 2017)

•  Treatment details

•  Time from the nurse-led consultation to the medical appointments

•  Medical practitioner seniority

Registrars (specialists in training) or interns were considered to be junior clinicians, and senior clinicians included fellows and consultants. Patients were considered to be reviewed by a senior clinician if they were seen in person by, or their management was discussed with, a consultant or fellow.

Data were extracted on all health symptoms and problems recorded as well as associated referrals or services offered. Symptoms were categorized into the following six separate domains: menopausal/hormonal therapy, bone health, lifestyle, psychosocial/mental health, sexuality, and fertility. Symptoms or health problems were coded and graded by severity (significant or minor). Referrals were defined as referrals to other specialists (including surgeons, physicians, psychiatrists, and psychologists). Services included dedicated cancer support programs and services. For the relevant domains, the definitions of referrals and services offered were standardized. Deidentified data were coded independently by two investigators (L.S. and C.K.). Any discrepancies were reviewed by a third investigator (G.B.M.). Data collection occurred during a nine-month period.

Data Analysis

For each domain, symptoms and referrals documented were assigned to either the nurse or the physician. Using IBM SPSS Statistics, version 25.0, the McNemar test was performed to determine if the proportion of documented symptoms and referrals by nurses and physicians were statistically significant (a = 0.05). A chi-square test of independence was used to determine differences in junior versus senior medical staff in detecting symptoms or making referrals. Prior to analyses related to the menopausal/hormonal therapy domain, participants not taking endocrine therapy at either the nurse-led consultation or medical appointments were excluded.

Results

Data collection included 160 patients who were treated for early-stage breast cancer from 2016 to 2017. The mean age at diagnosis was 60 years (SD = 11, range = 24–89). The majority of these cancers were node-negative (n = 112, 70%), AJCC stage IA (n = 92, 58%), ER-positive/PR-positive (n = 131, 82%), and diagnosed after menopause (n = 121, 76%). Sixty-six percent (n = 105) of these cancers were detected via routine surveillance or BreastScreen. Most patients had undergone breast-conserving surgery (n = 133, 83%) and had received radiation therapy (n = 115, 72%) and endocrine therapy (n = 145, 91%). The most common endocrine treatment was tamoxifen (n = 83, 57%), followed by aromatase inhibitors (n = 62, 43%). Chemotherapy was prescribed for 28% of patients (n = 45) and trastuzumab for 10% of patients (n = 16). Most patients had either no medical comorbidities (ASA I) (n = 62, 39%) or mild systemic disease illness (ASA II) (n = 82, 51%). However, 8% of patients (n = 12) had severe systemic disease (ASA III). Anxiety and depression were documented in 13% of patients’ (n = 21) past medical history on diagnosis (see Tables 1 and 2). The mean number of days between the medical consultation review and nurse-led consultation appointment was 105 (SD = 88, range = 0–484, median = 87).

Health Problems Reported

A substantial number of health problems were recorded per patient within each domain (see Table 3): menopausal/hormonal therapy (n = 121, 76%), psychosocial/mental health (n = 93, 58%), lifestyle (n = 107, 67%), bone health (n = 35, 22%), sexuality (n = 59, 37%), and fertility (n = 3, 2%). Most women had health problems in multiple domains (health problems per patient per domain: mean = 2.6, SD = 1.2, range = 0–5, with a median of 3 per woman) (see Table 4).

In the menopausal/hormonal therapy domain, 48 women (40%) reported significant health problems. These included side effects associated with endocrine medication described as moderate to severe, unmanageable, limiting activities of daily living (ADLs), or threatening adherence to treatment (e.g., sleep difficulties, hot flushes, arthralgias). An additional 73 patients (60%) reported health problems that were considered minor (occasional or intermittent symptoms, manageable, not limiting ADLs, and not threatening treatment adherence), including side effects of endocrine medications.

A total of 55 patients (34%) reported psychosocial/mental health problems that were considered significant, which included personality and mood changes potentially requiring acute management with psychiatry or psychology involvement or pharmacologic treatment. Minor problems were reported by 38 patients (24%) and included intermittent symptoms, such as occasional low mood or previous mental health issues that were currently well managed.

Lifestyle issues were documented for 107 patients (67%) and included physical symptoms requiring further investigation and potentially medical treatment; these symptoms included palpitations or shortness of breath, negative lifestyle choices (e.g., smoking, excessive alcohol consumption), and abnormal body mass index. Significant bone health problems (osteoporosis or low bone density requiring treatment) were recorded for eight patients (5%). Minor problems were raised by 27 patients (17%), including osteopenia or abnormal bone density not requiring medical treatment other than vitamin D and calcium supplements.

Health problems relating to sexuality (e.g., body image, sexual relationships, libido) were recorded as significant in 21 patients (13%) and minor in 38 patients (24%). Significant problems were those described by the patient as moderate to severe in nature and were significant enough to require a specialist referral. Minor problems were those described as well managed or intermittent and not causing significant issues. Fertility problems were described as significant by two patients (1%). Both requested egg harvesting and were receiving specialist fertility care.

BCNs were significantly (p < 0.001) more likely than physicians to record symptoms for menopausal/hormonal therapy (74% versus 52%), psychosocial/mental health (56% versus 11%), lifestyle (62% versus 19%), bone health (21% versus 11%), and sexuality (37% versus 4%), respectively.

Referrals and Services Initiated

For the 418 health problems that were identified, 43% (n = 178) resulted in referrals and services initiated; most of these were in the domains of psychosocial/mental health (n = 81, 51%) or lifestyle (n = 60, 38%). There were fewer referrals in the domains of menopausal/hormonal therapy (n = 18, 11%), sexuality (n = 15, 9%), bone health (n = 2, 1%), and fertility (n = 2, 1%). Twenty-eight percent of women (n = 45) had no referrals or services initiated, and 41% (n = 65) had a referral or service initiated in one domain and 23% (n = 37) in two domains. An additional 8% of women (n = 13) had a referral or service initiated in three domains. The mean number of referrals was 1.1 (SD = 1.9). BCNs were significantly more likely than medical staff (p < 0.001) to refer patients for follow-up for psychosocial/mental health, lifestyle, and sexuality issues (see Table 5).

Discussion

The implementation of SCPs into the standard management of breast cancer is not only a testament to improved survival rates, but also reflects the need to identify and manage persistent side effects and supportive care needs of patients many years after diagnosis (Fallowfield & Jenkins, 2015; Zdenkowski et al., 2016). This study examines the identification of symptoms and health problems by BCNs in a survivorship care planning consultation, as compared with standard medical consultations. Study results indicate that BCNs were significantly more likely than physicians to identify symptoms in the domains of menopausal/hormonal therapy, psychosocial/mental health, lifestyle, bone health, and sexuality. BCNs were also significantly more likely than physicians to refer patients for follow-up of psychosocial/mental health, lifestyle, and sexuality concerns. These results suggest that an interprofessional model of survivorship care for patients with early-stage breast cancer—involving BCNs and physicians—effectively documents health problems and initiates referrals.

In this study, most women had multiple health problems in numerous domains. The greatest number was recorded in the domain of menopausal/hormonal therapy, with BCNs significantly more likely than physicians to record symptoms. Patients prescribed extended endocrine therapy regimens require symptom management, which is an integral part of clinical practice (Zdenkowski et al., 2016). The presence and severity of these side effects is linked to treatment nonadherence (Cahir et al., 2015), which, in turn, is associated with diminished efficacy and increased risk of recurrence-related mortality (Lambert et al., 2017). Given that these side effects may be managed using pharmacologic (e.g., venlafaxine [Ramaswami et al., 2015] and gabapentin [Johns et al., 2016] for vasomotor symptoms), physical, and psychological treatments (e.g., cognitive behavioral therapy [Vo et al., 2018]), recognition is critical. Using the SCP to track ongoing health problems, the interprofessional team can flag symptoms, ensuring follow-up and treatment, as needed.

Women with a history of breast cancer are at increased risk for mental health conditions, including depression and anxiety (Carreira et al., 2018). Close to 60% of study participants reported mental health issues in the nurse-led consultation or medical consultation, compared to 13% with documented mental health issues at diagnosis. During nurse-led and medical consultations for patients receiving survivorship care, psychologic health problems can be screened, treated, and monitored (Stafford et al., 2015, 2016).

From this study’s data, there were low rates of documentation of sexuality-related concerns by physicians. A Cochrane review of women after breast cancer treatment reported that 50%–70% experienced sexual dysfunction, including decreased libido, vaginal dryness, and dyspareunia (Candy et al., 2016). As part of an SCP, symptom management can include changing endocrine agents (Zdenkowski et al., 2016); prescribing nonpharmacologic treatments, such as pH-balance vaginal gels (Candy et al., 2016); or suggesting psychosocial interventions. In this study, BCNs documented sexuality symptoms (37%), compared with physician documentation (4%), thereby underscoring that survivorship care requires providers’ detecting and then documenting symptoms. Of note, in this study, questionnaires and the SCP address sexuality. This suggests that standardization of SCPs and subsequent documentation ensures that any health problem is addressed during nurse and physician consultations.

This study evaluates two different models of care. The nurse-led consultation uses three validated patient self-report questionnaires followed by an extended (one-hour) consultation focused on survivorship care issues and guided by a standardized nurse-led consultation care plan template. Often, the BCN is well known to the patient from the beginning of the treatment journey, and this relationship continues throughout the survivorship phase. By comparison, the medical appointment is a shorter (15-minute time allocations) outpatient clinic appointment, focused primarily on cancer recurrence and further surveillance plans, without the use of questionnaires or standardized appointment templates. The consultant oncologists are usually permanent staff, whereas junior physicians present are allocated to the unit on a short rotating basis. The design of the nurse-led consultation, longer appointment times, and a preexisting rapport between the BCN and patient likely positively affected the ability of the nurse-led consultation to identify more survivorship health problems (particularly in relation to sensitive matters, such as sexuality and mental health problems) and initiate more referrals. In addition, the use of patient self-report questionnaires as prompt sheets likely played a role. These tools have been found to be beneficial to detecting patient concerns and are an efficient method of facilitating and improving communication (Berger et al., 2019).

Limitations

The data presented have limitations. The results are from a single site only, which limits generalizability. The average age of breast cancer diagnosis in Australia is 62 years (Australian Institute of Health and Welfare, 2019). Given this, the authors acknowledge that problems experienced by these women may differ from those in different age groups who have breast cancer (e.g., younger women in terms of reproduction, older women in terms of increasing complexity of comorbidities), so caution is warranted in generalizing to other age groups. In addition, generalization regarding the impact of ethnicity on outcomes cannot be made because ethnicity data were not collected. All women with early-stage breast cancer treated within the public health service are invited to attend the nurse-led consultation; however, 25% of patients decline. Women with low health literacy are more prone to having difficulties navigating and attending cancer services (Keim-Malpass et al., 2017).

The data collected from the nurse-led and medical consultations were retrospective, with substantial time between appointments for some women (because of factors such as appointment cancellations and specialist availability). Therefore, the symptoms present at the nurse-led consultation may not have been present during the medical consultation (and vice versa) and, therefore, could not be captured. In addition, to capture a symptom or issue, it had to be documented. It is possible that issues were discussed but not documented in both types of consultations.

Conclusion

For the early implementation of evidence-based and individually tailored interventions, systematic monitoring of health problems after breast cancer treatment is needed. This study demonstrates that side effects and other health issues are common after treatment for early-stage breast cancer, particularly in the domains of menopausal/hormonal therapy, psychosocial/mental health, and lifestyle. In the setting of a dedicated nurse-led consultation, BCNs undertaking SCPs are significantly more likely to document symptoms and health problems and make referrals for patients in the survivorship phase, as compared to standard medical consultations. Supported by these results, the hospital that trialed this study has continued to have BCNs provide SCPs during a nurse-led consultation in this cohort of cancer survivors.

The authors gratefully acknowledge Rebecca Ford, MD, for her assistance in the preliminary data collection.

About the Author(s)

Christina Kozul, BSc, BMBS, is an accredited general surgery registrar in the breast service at the Royal Melbourne and Royal Women’s Hospitals in Parkville, Victoria, Australia; Lesley Stafford, BA, BSocSci Hons, MA (Psych), MPsych (Clin), PhD, MACPA, is the head of Clinical Psychology in the Centre for Women’s Mental Health at the Royal Women’s Hospital in Parkville and an associate professor in the Melbourne School of Psychological Sciences at the University of Melbourne, both in Victoria, Australia; Ruth Little, MBBS, MPH, is a medical writer and an editor at the Royal Women’s Hospital in Parkville, Victoria, Australia; Chad Bousman, MPH, PhD, is an assistant professor in the Departments of Medical Genetics, Psychiatry, and Physiology and Pharmacology at the University of Calgary in Alberta, Canada; Allan Park, MN, is the breast unit data manager, and Kerry Shanahan, RN/BCN, is a breast care nurse consultant, both at Melbourne Health in Parkville, Victoria, Australia; and G. Bruce Mann, MBBS, PhD, FRACS, is the director of the breast service at the Royal Melbourne Hospital in Parkville and a professor in the Department of Surgery at the University of Melbourne, both in Victoria, Australia. The authors take full responsibility for this content. The article has been reviewed by independent peer reviewers to ensure that it is objective and free from bias. Kozul can be reached at christina.kozul@mh.org.au, with copy to CJONEditor@ons.org. (Submitted July 2019. Accepted December 16, 2019.)

 

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