Elsevier

Gynecologic Oncology

Volume 130, Issue 2, August 2013, Pages 389-397
Gynecologic Oncology

Review
Survivorship planning in gynecologic cancer patients

https://doi.org/10.1016/j.ygyno.2013.05.022Get rights and content

Highlights

  • Survivorship care plans following primary treatment may improve coordination of care amongst providers caring for women with gynecologic malignancies.

  • Late and long-term effects in survivors commonly include psychological distress, fatigue, menopausal symptoms, sexual dysfunction, pain, cognitive and sleep disturbances.

  • The cancer survivorship period provides a teachable moment on improving lifestyle behaviors and promoting health.

Abstract

Objective

There are over one million survivors from gynecologic malignancies currently living in the United States and this population is expected to increase by 33% over the next decade. Identifying the needs of these cancer survivors is often understudied and overlooked.

Methods

A literature review using MEDLINE was searched for research articles published in English from 1967 to 2013 focusing on survivorship care in women with gynecologic malignancies.

Results

For women with gynecologic malignancies, the survivorship period requires management of several aspects of care. Improved coordination of care between providers that may be addressed with the use of survivorship care plans and should include surveillance recommendations. Providers should conduct a focused evaluation of late and long-term effects of cancer that may continue to effect patients during and after treatment. Opportunities to improve lifestyle behaviors and continue general health maintenance should also be maximized.

Conclusions

The survivorship period incorporates the following: prevention of new cancer diagnoses, surveillance for recurrence, assessment and management of side effects from cancer and cancer treatment, and the coordination of care between patients and healthcare providers. Focusing on these components may improve quality of life as it allows for a seamless transition for cancer survivors and their caregivers.

Introduction

Currently, it is estimated that there are over 7 million female cancer survivors in the United States and over one million survivors of gynecologic malignancies [1]. Due to increasing age and cancer incidence, advances in diagnostic tests and improved therapies, this number is estimated to increase by an additional 33% over the next ten years [2]. As this population grows, it is important to recognize the long-term management of the effects of cancer and therapy on gynecologic cancer survivors and their caregivers and families. However, many survivors continue to be unaware of the increased risk for late effects of their diagnosis and often do not even receive the basic required care. Along these same lines, despite a willingness to provide follow up care for cancer survivors; many primary care physicians (PCP) are often under-trained on specific needs of survivors [3], [4]. This is in part due to evolving and changing needs of patients and a lack of provider education and evidence-based clinical practice guidelines.

In order to address some of these needs, in 2005, the Institute of Medicine (IOM) report “From Cancer Patient to Cancer Survivor: Lost in Transition” has highlighted the unique needs that patients experience related to both the effects of cancer and those of treatment [3]. Though not universally accepted, survivorship is often defined as beginning at the time of cancer diagnosis. The components of survivorship care should include the following: 1) prevention of new and recurrent cancer, 2) surveillance for cancer spread or recurrence, 3) evaluation of cancer and treatment side effects, and 4) and coordination of follow up regarding all aspects of care [3].

Despite this report, practices have been slow to evolve and provide the necessary evaluation and services. Survivorship data in breast cancer has provided a foundation for other disease sites, yet research on survivors of gynecologic malignancies is only in its infancy [3]. As it is well known that gynecologic malignancies can leave a significant impact, emotionally, physically, and financially, identifying needs and services may assist in the transition to wellness [5]. Ensuring that survivors' needs are also shared with caregivers and PCPs will also enhance survivorship care. The purpose of this review is to provide the most up-to-date research and resources available for those who take care of survivors of gynecologic malignancies.

After the completion of primary treatment; transition to routine medical care is rarely seamless. Furthermore, following completion of treatment, cancer survivors remain unaware of future health risks and opportunities to address these and other issues are often overlooked [6]. Patients and providers must not only be aware of signs and symptoms of recurrent disease, but must also be aware of the long term and late complications of treatment. In the IOM report, the need to improve coordination of care for survivors was highlighted. The recommendations include the creation of a survivorship care plan – incorporating components of cancer diagnosis, treatment, and complications – for both the patient and the PCP. Furthermore, scheduled follow up visits, surveillance recommendations, and routine health maintenance should also be included. This is consistent with a study regarding needs assessment of gynecologic cancer survivors who stated that receiving medical information, via pamphlet or provider discussions, regarding their care was considered a high priority and that these efforts may reduce anxiety and empower patients and caregivers [7]. Unfortunately, few survivors and providers receive this information, resulting in a compromised quality of care [8].

In a recent study of gynecologic cancer survivors, the provision of an SCP did not result in the perception of increased quality of care or satisfaction compared to those who did not receive an SCP [9]. Though this may be attributed to high satisfaction in both groups, the role of SCP to communicate amongst providers has demonstrated improved coordination of care. For example, PCPs reported higher adherence to appropriate screening tests in patients following a cancer diagnosis when provided a SCP [10], [11]. As patients report that they receive follow up care from their oncologist (53%), PCP (13%), and a combination (32%), communicating the SCP is critical [12]. However, only 28% of cancer survivors felt that their PCP and their oncologist communicated well, and over 50% of PCPs reported the need for additional communication regarding the transfer of care for cancer survivors [13], [14]. Since practice regarding post-treatment care and assessment for recurrence differs significantly between the oncologist and PCP, ensuring that all providers know the follow-up plan will, undoubtedly, enhance survivorship care [8], [15]. Typically, the focus of follow up care has been on surveillance for the detection of recurrent disease. However, in addition to surveillance, survivorship care should also encompass the following components: 1) chronic effects of cancer and its treatment, 2) continuing routine health maintenance, and 3) preventative and risk reducing care. Furthermore, the SCP should identify the responsible providers for each aspect of care and provide patients with signs and symptoms that should prompt point of access care.

Recently, the Society of Gynecologic Oncology created modifiable survivorship care plans and pocket cards to help enhance this communication, which is available at https://www.sgo.org/clinical-practice/management/survivorship-toolkit/. These documents have been customized based on site of disease and can be used as an abbreviated SCP for patients and other providers (Fig. 1).

An important component of cancer survivorship, often the focus, is surveillance for cancer recurrence. Unfortunately, surveillance recommendations are often based on anecdotal evidence and practices vary significantly from physician to physician. Currently, across all disease sites, cancer survivors undergo much more intensive surveillance than is recommended, which has not been shown to improve survival outcomes, can translate to poor quality care, and increase anxiety [2], [16], [17]. Thus, communication to both patients and PCPs should be clear to prevent underuse, overuse, or misuse of testing [18]. In regards to gynecologic malignancies, in 2011, the Society of Gynecologic Oncology published recommendations regarding surveillance in order to help reduce variations and prevent unnecessary testing [17]. Ensuring that survivors are aware of signs and symptoms of recurrent disease as well as effects of treatment should be performed at every encounter and may help alleviate concerns. Furthermore, survivors should be aware of the risk and symptoms of secondary malignancies as a result of risk factors (e.g. human papillomavirus) or treatments (e.g. uterine carcinosarcoma after pelvic radiation) for their primary diagnosis.

Effects of cancer and its treatment begin at diagnosis and can have a chronic impact on patients, affecting the quality of life (QoL) of survivors. Though patients often report a decreased QoL during treatment; interestingly, studies across gynecologic malignancies have shown that a majority of patients do not demonstrate a long-term impairment in QoL [17], [19], [20]. Along with emphasizing the positive outcomes of cancer treatment, these data indicate that QoL may be improved in the short term by reducing the adverse effects of treatment [20]. As it is expected that all survivors will experience at least one symptom, addressing these needs earlier may result in improved outcomes [17]. Though the resultant symptoms are largely dependent on the treatment(s) rendered, several toxicities are relatively universal or common in women with gynecologic malignancies. Below are the most common reported effects and their management in the gynecologic oncology literature (Table 1).

Fatigue, defined as distressing and persistent physical or emotional exhaustion related to cancer or cancer treatment, is one of the most common side effects, impacting almost all patients to some degree and often lasts for extended periods [2], [3], [21]. Studies have shown that fatigue negatively affects QoL and can be potentiated by concomitant depression, emotional distress, pain, and sleep disturbances [3]. Unfortunately, providers are often ill equipped to address fatigue, and it is often accepted as an anticipated consequence of cancer care. Therefore, when present, contributing factors, such as anemia, depression and sleep disturbances, should be evaluated for and addressed [3]. Moderately intense exercise has been shown to have therapeutic benefit and should be encouraged [2]. In addition, psychosocial interventions and the use of antidepressants and stimulants (e.g. methylphenidate or modafinil) have also been used with some benefit [2], [21], [22]. However, data is limited and therapy should be tailored to each individual's needs.

Throughout survivorship care, one of the most critical effects of a cancer diagnosis is the impact on one's psychological well-being and the effect remains high during the entire survivorship period [23]. When psychological disturbance is present, women are at higher risk for maladjustment, which can affect all facets of life from work, relationships, and one's sense of well-being [23], [24]. Amongst gynecologic cancers, over 85% reported some level of need, which is highest in ovarian cancer survivors [23]. Interestingly, even in survivors of early stage ovarian cancer, remote from treatment, psychological issues remained prevalent, suggesting that diagnosis rather than prognosis is likely the true root cause [6], [17], [19], [25].

Two common manifestations of the psychological impact of a cancer and treatment on survivors are anxiety and depression [1]. Anxiety is often instigated by a fear of cancer recurrence (FCR), and persists during the survivorship trajectory [5], [19], [25]. In an analysis of 150 women who were newly diagnosed with gynecologic malignancies, ~ 50% rated FCR as moderate to high [26]. FCR is typically more common in younger patients as well as those with lower quality of life and higher level of distress [25], [26]. Therapy, including spiritual/religious coping as well as addressing social factors that improve emotional well-being, may help reduce this anxiety [25], [26]. Screening for symptoms at follow up visits may allow for earlier intervention. If anxiety or depression is detected, offering psychotherapy and cognitive behavior therapy, in place of or in addition to pharmaceutical options such as antidepressants or anti-anxiolytics, have been shown to be effective modalities [1], [2].

Section snippets

Sexual health/dysfunction

Sexual health issues for women with a history of gynecologic malignancies are commonly an under-addressed topic due to health-care providers being ill-equipped to counsel patients and hesitancy by patients to broach the issue. Regardless, difficulties with sexual function are one of the more common late effects in women, affecting over 50% of survivors with gynecologic cancers and changes include but are not limited to infertility, a negative effect on sexual desire and/or arousal, and

General health maintenance

Survivors often inquire about efforts to reduce the risk of recurrence or development of new malignancies. These efforts are best directed to improving general health behaviors and studies have shown that after a cancer diagnosis, they are willing to make positive changes to improve behaviors and the cancer diagnosis can serve as a ‘teachable moment’ for both patients and their families [6], [58], [59]. In addition to improving cancer outcomes, healthy behaviors may also benefit survivor

Employment

During and after treatment, cancer survivors often face concerns regarding financial issues including those related to insurance and employment. Survivors often face concerns for acquiring or maintaining health insurance. In 2002, almost 40% of cancer survivors were of working age and a majority of those who worked before their cancer diagnosis returns to work [3], [8]. However, cancer survivors who continue to work may have specific restrictions and 20% of survivors who return to work report

Conclusions

As the population of women living with a history of gynecologic cancer continues to grow, addressing survivorship issues needs to become part of routine follow up care. Focusing on quality of life topics, in addition to health maintenance and cancer surveillance, may provide more judicious use of available resources. The incorporation of survivorship outcomes in clinical trials is increasing and continuing to impact the treatment decision-making process. Consideration of these outcomes may

Conflict of interest statement

The author has no conflict of interest with the content of this manuscript.

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