Ovarian Cancers Evolving Paradigms in Research and Care (2016) / Chapter Skim
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5 Supportive Care Along the Survivorship Trajectory
5 Supportive Care Along the Survivorship Trajectory
Pages 213-254
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Instead, this chapter highlights the overarching issues in survivorship research and supportive care and discusses the evidence base for specific issues for women diagnosed with ovarian cancer.
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150) The IOM study From Cancer Patient to Cancer Survivor stated that "although some cancer survivors recover with a renewed sense of life and purpose, what has often not been recognized is the toll taken by both cancer and its treatment -- on health, functioning, sense of security, and well-being.
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Women who had worse prognoses and shorter life expectancies may have had very different concerns that could have been overlooked in a retrospective design. PALLIATIVE CARE OVERVIEW An essential part of the comprehensive care of cancer patients is palliative care that begins at diagnosis.
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. PPC assessments and interventions for women with ovarian cancer need to engage both women and their health care Integrated Model of Palliative Care Advance Care Planning Death Curative Care Bereavement Hospice Palliative Care Time FIGURE 5-1 Integrated model of concurrent palliative and oncology care.
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. Providers also respond more favorably to the use of the term "supportive care" rather than "palliative care" (Dalal et al., 2011; Fadul et al., 2009)
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. INFORMATION NEEDS AND SHARED DECISION MAKING In 2013, an IOM report stated, "A high-quality cancer care delivery system depends upon clinical research that gathers evidence of the benefits and harms of various treatment options so that patients, in consultation with their clinicians, can make treatment decisions that are consistent with their needs, values, and preferences" (IOM, 2013, p.
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. On the other hand, cancer patients undergoing active treatment, including those with ovarian cancer, can be reluctant to complain about their symptoms because of concerns that talking about them might distract their providers away from what they consider to be the more important treatment issues (Gunnarsdottir et al., 2002; Passik et al., 2002; Sun et al., 2007)
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Women in this study had low perceptions of control over their symptoms, but those who had received recommendations for symptom management reported significantly higher perceptions of control than those who had not. (See more on symptom assessment and self-management later in this chapter.)
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. The other project is developing an ovarian cancer patient-centered decision aid (PCORI, 2015c)
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. Most commonly, these side effects are similar to those experienced by other cancer patients undergoing chemotherapy and include pain, fatigue, peripheral neuropathy, abdominal symptoms, nausea, hair loss, weight loss, and loss of appetite (Arriba et al., 2010; Badr et al., 2006; Ferrell et al., 2003a; Lockwood-Rayermann, 2006; Otis-Green et al., 2008; Sun et al., 2007)
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. Ovarian cancer survivors report a good quality of life overall, and an improved quality of life is most likely to be reported when a patient has supportive relationships, a reprieve from treatment, and a lack of physical side effects (Bodurka-Bevers et al., 2000; Champion et al., 2007; Ferrell et al., 2005; Fox and Lyon, 2007; Kornblith
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. Findings on spirituality and ovarian cancer survivorship are mixed; some women who have experienced ovarian cancer report feeling increased meaning and purpose of life, with faith providing strength and hope, while others report a loss in spiritual faith (Champion et al., 2007; Ferrell et al., 2003d; K ornblith et al., 2010; Matulonis et al., 2008; Monahan et al., 2008; Seibaek et al., 2012; Swenson et al., 2003; Wenzel et al., 2002)
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Psychological Distress Ovarian cancer survivors have high levels of depression and anxiety as compared with the general population and non-gynecologic-cancer survivors (Bodurka-Bevers et al., 2000; Ferrell et al., 2005; Norton et al., 2004; Roland et al., 2013) , and younger survivors tend to have higher levels of distress and depression than older survivors (Bodurka-Bevers et al., 2000; Norton et al., 2004; Ponto et al., 2010)
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. ASCO guidelines state that all cancer patients of childbearing age should receive information about fertility preservation options, yet in practice this does not always happen (Lee et al., 2006; Quinn et al., 2008; Schover et al., 1999; Tomao et al., 2015)
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. INTERVENTIONS FOR SUPPORTIVE CARE AND IMPROVING OUTCOMES Researchers need to better understand how to manage the side effects of disease and treatment, as well as how to develop interventions that can improve disease and treatment outcomes for women with ovarian cancer.
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Complementary and Alternative Medicine Like other cancer patients, women with ovarian cancer often explore a number of nonstandard treatments (e.g., acupuncture, yoga, vitamins, herbs) to manage their symptoms or even in an attempt to cure the disease (Arriba et al., 2010; Chan et al., 2011; Ferrell et al., 2005; Helpman et al., 2011; Helpman Bek et al., 2009; Lu et al., 2009; Matulonis et al., 2008; von Gruenigen et al., 2006; You et al., 2009)
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. Similarly, ovarian cancer patients reporting depression and low social support had higher levels of proteins associated with angiogenesis, tumor growth, and immune response (Costanzo et al., 2005; Lutgendorf et al., 2002, 2008)
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Providers need to ask women about their symptoms, and survivors need to report any new information about their symptoms to their providers in order to inform the process of developing a treatment plan or supportive care interventions. Furthermore, women need to make their personal preferences for care known to their providers.
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PROs in Ovarian Cancer The NCI's Symptom Management and Health-Related Quality of Life Steering Committee convened a group of experts to identify a core set of symptoms to be assessed routinely in cancer clinical trials for three cancers with a high symptom burden: ovarian, head and neck, and prostate (Reeve et al., 2014)
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Still, survivors tend not to transition to palliative care even in the face of an unfavorable prognosis (Sun et al., 2007)
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. As cancer survival rates have increased over the past 20 years, researchers, clinicians, and survivors have come to see the value of adopting the chronic care model of self-management into supportive care services for patients with cancer, and self-management interventions to improve coping with cancer-related symptoms have shown promising results (Cimprich et al., 2005; CockleHearne and Faithfull, 2010; Foster and enlon, 2011; Hoffman et al., 2013; F Koller et al., 2012; Lee et al., 2013; van den Berg et al., 2012)
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The Gynecologic Oncology Group recently compared a nurse-delivered WRITE Symptoms intervention with a self-directed, computer-mediated WRITE Symptoms intervention to see how effective each was in decreasing symptom severity, distress, consequences, and depression and improving quality of life among women with recurrent ovarian, fallopian tube, or primary peritoneal cancer (NIH, 2013)
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to offer referral to expert-level palliative care; and (4) to offer referral to hospice if the patient has a prognosis of 6 months or less.
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. Gynecologic oncology patients are more likely to use hospice services and reap the benefits for themselves and their families when hospice is recommended by their oncology team (Brown et al., 2014)
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. A survey of gynecologic oncology fellowship directors found that all reported that their programs had covered at least one palliative care topic in didactic sessions in the previous year and that 48 percent offered a required or elective palliative care rotation, but that only 14 percent had a written palliative care curriculum (Lefkowits et al., 2014)
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• As is the case with other cancers, ovarian cancer care is seldom integrated with palliative care, and gynecologic oncologists may need more training in palliative and end-of-life care. REFERENCES Abbott-Anderson, K., and K
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2009. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: The Project Enable II randomized controlled trial.
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2015. Neurotoxicity in ovarian cancer patients on Gynecologic Oncology Group (GOG)
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2013. Outpatient end of life discussions shorten hospital admissions in gynecologic oncology patients.
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2014. Assessment of palliative care training in gynecologic oncology: A gynecologic oncology fellow research network study.
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2007. Reproductive and sexual function after platinum-based chemo therapy in long-term ovarian germ cell tumor survivors: A Gynecologic Oncology Group study.
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2014. The assessment of telemedicine to support outpatient palliative care in advanced cancer.
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2014. Needs assessment of palliative care education in gynecologic oncology fellowship: We're not teaching what we think is most important.
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2015. Improvement in symptom burden within one day after palliative care consultation in a cohort of gynecologic oncology inpatients.
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2009. Chronic physical effects and health care utilization in long term ovarian germ cell tumor survivors: A Gynecologic Oncology Group study.
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2008. Case-control comparison of quality of life in long-term ovarian germ cell tumor survivors: A Gynecologic Oncology Group study.
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2014. Developing a service model that integrates palliative care throughout can cer care: The time is now.
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2015. Im proving quality and decreasing cost in gynecologic oncology care.
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2014. Early integration of palliative care facilitates the discontinuation of anticancer treatment in women with advanced breast or gyneco logic cancers.
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2010. Early palliative care for patients with metastatic non-small-cell lung cancer.
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2012. The association between quality of life domains and overall survival in ovarian cancer patients during adjuvant chemotherapy: A Gynecologic Oncology Group study.
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2014. Early palliative care for patients with advanced cancer: A cluster-randomised controlled trial.
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