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Review
Pelvic floor dysfunction survivorship needs and referrals in the gynecologic oncology population: a narrative review
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  1. Ioana Marcu1,
  2. Megan Melnyk2,
  3. Silpa Nekkanti1 and
  4. Christa Nagel3
  1. 1Obstetrics and Gynecology, Division of Female Pelvic Medicine and Reconstructive Surgery, The Ohio State University Wexner Medical Center, Columbus, Ohio, USA
  2. 2School of Medicine, The Ohio State University Wexner Medical Center, Columbus, Ohio, USA
  3. 3Obstetrics and Gynecology, Division of Gynecologic Oncology, The Ohio State University Wexner Medical Center, Columbus, Ohio, USA
  1. Correspondence to Dr Ioana Marcu, Obstetrics and Gynecology, Division of Female Pelvic Medicine and Reconstructive Surgery, The Ohio State University Wexner Medical Center, Columbus, Ohio, USA; imarcu2000{at}gmail.com

Abstract

The population of survivors of gynecologic malignancies continues to grow. The population of gynecologic oncology survivors has a high prevalence of pelvic floor disorders. Gynecologic oncology patients identify several survivorship needs, including a need for more focused pelvic floor disorder sequelae care. The increasing focus on patient needs following cancer treatment has led to the development of survivorship care plans and other strategies for addressing post-treatment transitions and sequelae. Common themes in patient survivorship care are patient needs for flexible and integrated care, and it is unclear if survivorship care plans in their current state improve patient outcomes. Patient referrals, specifically to urogynecologists, may help address the gaps in survivorship care of pelvic floor dysfunction.

The objective of this review is to discuss the burden of pelvic floor disorders in the gynecologic population and to contextualize these needs within broader survivorship needs. The review will then discuss current strategies of survivorship care, including a discussion of whether these methods meet survivorship pelvic floor disorder needs. This review addresses several gaps in the literature by contextualizing pelvic floor disorder needs within other survivorship needs and providing a critical discussion of current survivorship care strategies with a focus on pelvic floor disorders.

  • Gynecology
  • Surgical Oncology
  • Pelvic Floor

https://doi.org/10.1136/ijgc-2023-004810

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    Introduction

    Seventeen million cancer survivors live in the United States. Over one million of these are survivors of gynecologic malignancy, and that number is projected to increase over time.1 Along with the high gynecologic oncology survivorship numbers comes a responsibility to learn how to best care for the survivor population.

    Pelvic floor disorders, defined as pelvic organ prolapse, urinary incontinence, and fecal incontinence, are common in the general population, with 25.0% of women having a pelvic floor disorder.2 The incidence of pelvic floor disorders is similarly high in the pre-treatment gynecologic oncology population.3 4

    The rates of pelvic floor disorders and sexual dysfunction are also high among gynecologic malignancy survivors, but there is notable heterogeneity in the literature. Patients with a history of uterine cancer have rates of urinary incontinence and dyspareunia ranging from 2% to 44% and 7% to 39%, respectively. In ovarian cancer survivors, the rates of stress urinary incontinence, urge urinary incontinence, pelvic organ prolapse, and sexual dysfunction were 32–42%, 15–39%, 17%, and 62–75%, respectively.5

    It is also unclear if the incidence of pelvic floor disorders in patients with gynecologic malignancies is higher post-treatment compared with pre-treatment. The same recent systematic review of pelvic floor disorder sequelae of patients with ovarian cancer which cited that half of pre-operative patients reported urinary incontinence and 17% reported bulge symptoms, also noted that pre- and post-treatment rates were similar.4

    Percentages alone, however, do not adequately measure the pelvic floor disorder burden in the gynecologic malignancy survivor population. Gynecologic cancers and treatments such as prolonged surgery, radical resection, or pelvic radiation can lead to severe and sometimes delayed sequelae.6 While overall population statistics may not support an overall higher incidence of pelvic floor disorders in gynecologic cancer, the population of gynecologic oncology patients with pelvic floor disorders is distinct in its higher prevalence of severe post-radiation and other post-treatment changes and is distinct from the general population due to the physical and emotional burden of cancer diagnosis and treatment. Moreover, both pelvic floor disorders and gynecologic malignancies are found at a high rate in the same aging population,7–9 and pelvic floor disorders have also been shown to decrease quality of life in patients with a history of gynecologic malignancy.10 11

    Regardless of causality or severity, given the high prevalence of pelvic floor disorders in the gynecologic oncology survivor population, pelvic floor disorders are increasingly recognized as part of survivorship care. Our task is to determine how to best integrate pelvic floor disorder survivorship care within the existing therapeutic pathway. While there is agreement on survivorship needs in general and cancer sequelae specifically, there is no consensus on best practices. This review will provide a survey of patient needs in survivorship care and cancer sequelae. The focus in survivorship literature has been on survivorship care plans to meet these needs, and so we will discuss the available evidence on survivorship care plans. The review will further discuss alternative methods for addressing these needs, including referral patterns from gynecologic oncology to other specialties with a focus on pelvic floor disorders.

    Survivorship Care Needs: Content

    While this review focuses on pelvic floor disorders, it is essential to acknowledge that the scope of survivors’ needs extends far beyond the pelvic floor. A survey-based study of gynecologic cancer survivors by Peerenboom et al revealed that their greatest concern is cancer recurrence, followed by a desire to lose weight, and then a concern for long-term sequelae.12 The literature consistently supports that survivors have a broad range of concerns as they leave the immediate post-treatment period, including psychosocial, mental, and physical well-being needs.13 14

    The focus of survivors on cancer-related concerns as well as broad-sweeping psychological concerns does not detract from their pelvic floor disorder-related needs, but instead contextualizes them. Practitioners ought to consider these other concerns when addressing pelvic floor disorders. And while it may not be the primary concern, sequelae remain a considerable concern for patients.15 The Gynecologic Cancer InterGroup Consensus Guideline for Long-term Survivorship reported that over half of gynecologic cancer survivors experience health concerns or sequelae more than 5 years after treatment.15 Peerenboom et al’s study echoes these high rates of concern, noting that 30% of patients with gynecologic cancer are concerned about cancer sequelae.12 Cancer sequelae and pelvic floor disorders are not simply common in the survivor population – they are bothersome and worrisome for these patients.

    Gynecologic oncology survivors specifically cite wanting more information regarding pelvic floor disorders integrated into their care. A 2018 qualitative study of gynecologic oncology patients, caregivers, and healthcare providers demonstrated that nearly all participants wanted more information regarding survivorship needs, including long-term sequelae.16 Gynecologic cancer patients experiencing post-treatment incontinence cited a lack of information about these sequelae and possible treatments, including pelvic floor physical therapy, as their principal barrier to not addressing this condition.17 Hazewinkel et al conducted semi-structured interviews of gynecologic cancer survivors who had not sought medical attention for severe pelvic floor symptoms. Seven of the 15 women would want treatment for their conditions, and the majority felt they would have benefited from more pelvic floor disorder-related information.18

    There are several reasons why survivors feel their pelvic floor disorder needs are not met. Barriers to managing pelvic floor disorders in this population include time pressure, feeling overwhelmed by the logistics of oncology appointments, and focus on oncology treatments rather than side effects.19

    Survivorship Care Plans

    Survivorship care plans were developed to meet these far-reaching needs of the cancer survivor population, including sequelae-related care needs. Survivorship care plans have a broad content scope: (1) prevention of new or recurrent cancer, (2) surveillance for cancer spread or recurrence, (3) evaluation of cancer and side effects, and (4) coordination of care.20 They are increasingly common; 10–50% of cancer survivors now have survivorship care plans as part of their post-treatment care.6 21 Further implementation of survivorship care plans is encouraged by the Institute of Medicine in its 2006 report ‘From Cancer Patient to Cancer Survivor,’ and so survivorship care plans serve as the blueprint for novel implementation of survivorship care.22 23 This review will discuss survivorship care plans because they often serve as the framework for the assessment and treatment of gynecologic oncology sequelae, including pelvic floor disorders. Shortcomings of gynecologic oncology survivorship care plans, therefore, also represent shortcomings in our evaluation of survivors’ pelvic floor disorders.

    In the general cancer survivorship literature there is broad consensus supporting the concept of survivorship care plans.24–26 However, studies have not found reproducible positive clinical effects resulting from survivorship care plans.26–28 Data from the gynecologic oncology population also do not support reproducible clinical benefit.29–32 Multiple prospective, randomized studies, in which patients are assigned either to receiving usual care or receiving written survivorship care plans after surgery or after completion of treatment, have found no consistent benefits from survivorship care plans in the gynecologic oncology population as regards patient satisfaction and perception of care. The survivorship care plans found in randomized controlled trials often include detailed summaries of cancer treatment, signs of recurrence, and discussion of sequelae. Gynecologic oncology patients who received survivorship care plans not only fail to see benefit, but they sometimes report increased worry regarding their symptoms or treatment.29 31

    Other randomized studies show limited benefits from survivorship care plans, including decrease in short-term worry and increase in patient education.30 33 Worthy of mention is a retrospective study that evaluates an online tool developed by the University of Pennsylvania. This online interactive program is called OncoLife and it generates survivorship care plans. Over a year and a half, the over 3000 individuals who used this tool, 65% being survivors, have reported a high satisfaction with OncoLife.34 These benefits, however, have been limited to individual populations and individual survivorship care plans. Survivorship care plans, whether for the gynecologic oncology population or the general cancer population, have not consistently been shown to have clinical benefit.

    Why Survivorship Care Plans Fail

    Given that one of the main goals of survivorship care plans is to address patient concerns about cancer sequelae including pelvic floor disorders, determination of how and why survivorship care plans have fallen short of meeting patient needs will help inform how to address pelvic floor disorders in the survivor population.

    Limited data exist about pelvic floor disorder-related outcomes of survivorship care plans in the gynecologic oncology population, which is why this discussion centers on survivorship care plans as a whole. Of note, while survivorship care plans are intended to address sequelae, pelvic floor disorders are often not the focus of even well-designed survivorship plans. In an excellent article discussing survivorship plans in gynecologic oncology, Lokich reviews gynecologic malignancy surveillance guidelines and discusses long-term effects such as cognitive dysfunction, fatigue, and sexual side effects, but does not address pelvic floor disorders.20 Times are slowly changing, given that the 2022 European Society for Medical Oncology Endometrial Cancer Practice Guidelines now list genitourinary syndromes as sequelae to monitor for, whereas previous guidelines omitted these.35 There is an opportunity to better integrate pelvic floor disorder information into survivorship care.

    One potential reason for negative results from survivorship care plans comes from Brother et al’s discussion. They posit that the lack of favorable clinical outcomes is partly because “patients do not know what they do not know. That is, patients who do not receive a survivorship care plan may be unaware that anything is ‘missing’.’’30 This argument reconciles patients' high approval rate for survivorship care plans as an idea, but the lack of reported benefit seen in studies, especially randomized studies. Perhaps, though, survivors do know what they need. And while survivorship plans may be well-intentioned, they may not meet those needs. We will consider that the manner in which patient care is delivered is lacking. The next section will not discuss the content of survivorship care, but the mode.

    Survivorship Care Needs: Mode

    Flexible and Integrated Care

    Individualized and flexible care are sought-after features of survivorship care. Semi-structured interviews of gynecologic oncology patients revealed that survivors greatly varied in their preferred mode, content, and timing of survivorship information.16 Outside of the gynecologic oncology literature, a study evaluating survivorship plans in breast cancer noted that survivors preferred personalized treatment plans integrated into their oncological care.36

    Providers of cancer care have also identified these features as paramount to the delivery of survivorship care; a focus group-based study of gynecologic oncology providers concluded that follow-up care must feature flexibility and be individualized, with the acknowledgment that their existing program could alleviate anxiety in certain patients, but increase anxiety in others.37 A survey-based study of Australian gynecologic oncology providers reported that the most critical factor in supportive care was having sufficient time to address supportive needs and pointed to the need for individualized and flexible care for this population.38

    We may interpret the negative findings of randomized controlled trials differently through the lens of flexibility and patient autonomy. The strength of randomized controlled trials, that is, the lack of bias in the selection of groups, may now be considered a weakness of the studies. That is, if finding an individualized survivorship care plan is integral to patient satisfaction, then the randomized, one-size-fits-all formulation may be harmful to patient outcomes. Likewise, the self-selecting nature of the survivorship care plan online tool might now be considered not just selection bias, but an autonomy-focused strength of this survivorship care plan modality.6 34

    Another refrain from survivorship literature is continuity of care and integrated care. The value of integrated plans is reflected in a qualitative study that evaluated the priorities of breast cancer survivors in their survivorship plans. It showed that patients’ first and second priorities are continuity of care with physicians and the ability to contact a person they know with concerns.39

    Gynecologic oncology patients are accustomed to a complete care model whereby their oncologist is both their medical oncologist and surgical oncologist. They often insist that their gynecologic oncologist take care of all of their medical conditions, oncologic or otherwise.40 General cancer patients often do not have a complete care model and are far more likely to seek care from a primary care physician.41 What ‘integrated care’ means depends on the expectations of the patient population.

    This integrated care has a role when discussing outcomes of studies of survivorship care plans. Often in studies the survivorship care plan is discussed by an oncology nurse but not by the patient’s primary oncologist. Moreover, if integrated care is the goal, maintaining satisfaction during the transition from primary oncologist to primary care physician or gynecologist may prove difficult.

    Pelvic Floor Disorders and Mode of Patient Care Delivery

    We have discussed that pelvic floor disorders are pervasive in this population and that gynecologic oncology patients might suffer from sequelae. We have also emphasized that their needs are heterogeneous. Gynecologic oncology survivors may have no pelvic floor disorders or might have very severe pelvic floor disorders. We have likewise discussed the context of cancer sequelae in general and pelvic floor disorders specifically; sequelae do not exist in a vacuum but instead exist in the context of other complex survivorship care. These very qualities of the pelvic floor disorders in the gynecologic oncology population lend themselves to flexible and integrated care. High-quality pelvic floor disorder care in the survivor population is best served by adherence to these principles. Likewise, addressing pelvic floor disorders within this framework serves to respect these patient desires. Survivorship care of pelvic floor disorders must first include appropriate identification of patient needs, which may be done through open-ended interview questions, validated questionnaires, or a combination of both.

    After identification of patient needs, patient education about their conditions and options ought to allow for both integrated and flexible care. Integrated and flexible care may involve providing patients with additional information if desired, addressing pelvic floor disorders longitudinally, or offering referrals to specialized care teams that are familiar with survivorship care. Severity of symptoms may or may not correspond to the patient’s subjective level of bother or to her desire for further intervention. A patient with frequent incontinence may not be as bothered by it if her main goals are to spend time with grandchildren and if wearing a pad is not bothersome. The same level of incontinence may be very bothersome if a patient goal is to be able to attend sport class without needing to wear a pad.

    A patient may want more information, referral to a specialist, or to not spend any more time addressing pelvic floor disorders at all. Their preference depends on severity of symptoms, severity of bother, and overall desire for further intervention. Perhaps we need to restructure our thinking from ‘survivorship care plans do not work’ for addressing pelvic floor disorders to ‘certain kinds of survivorship care plans do not work.’ Survivorship care in practice would therefore benefit from reaching beyond the ‘one-size-fits-all’ models often found in randomized controlled trials, and allow for further significantly more personalization, self-selection, and supplementation.

    Gynecology Oncology Survivor Referrals

    Extending the role of survivorship care plans by focusing on referrals and treatment options has the potential to improve patient outcomes. Referrals in the gynecologic oncology population are worth exploring for several reasons: referrals can be easily integrated into existing survivorship care plans, referrals contribute to flexible patient care, and preliminary data show high satisfaction rates with referrals.

    Survivorship care plans and referrals have an established relationship — patients who have survivorship care plans at their survivorship visit have a higher rate of referral to specialty care clinics.41 However, pre-existing referral pathways in gynecologic oncology clinics are rare, as low as 30% in an Australian survey-based study.38 This provides an opportunity to further integrate specialty care clinics or referral patterns into survivorship care or survivorship care plans. While a referral does not represent continuity of care with the original provider, it represents flexible and individualized care that allows patients to establish a continuity-based relationship with another provider.

    Patient outcomes appear to be improved by referrals to subspecialists or by receiving subspecialist care. Specialized clinics, including a survivorship sexuality clinic for survivors of gynecologic malignancies, have led to high levels of patient satisfaction.42 One of the best-studied modalities for treating pelvic floor disorders in the gynecologic oncology survivor population are pelvic floor physical therapy or home pelvic floor exercises, which treat high-tone pelvic floor disorders and dyspareunia. We will discuss studies with and without referral to pelvic floor physical therapy because, even without referral, these studies represent the most extensive corpus of work on the benefits of integration of another field’s therapeutic expertize in the care of survivors and thus provide an excellent analogous discussion for referrals.

    Several studies have noted high patient satisfaction and long-term durability regarding physical therapy, but there is heterogeneity.43–45 A review article evaluating sexual dysfunction after radiation therapy reported the outcomes of five studies assessing the effect of pelvic floor physical therapy on the sequelae of vaginal dryness, stenosis, and pain. The studies overall showed that there is benefit from physical therapy in patients with a history of pelvic radiation and dyspareunia.45

    There are limitations to the preceding discussion. The abovementioned study which reported benefits from the specialty sexuality clinic suffered from sampling bias. Not all the studies on pelvic floor exercises included referrals to pelvic floor physical therapy, as previously discussed. That said, the limited data that exist overall support that referrals or involvement of other supportive fields benefit survivors of gynecologic malignancies.

    Referrals of Gynecologic Oncology Survivors to Urogynecology

    Urogynecology is a field that focuses on female pelvic floor disorders and is therefore equipped to care for patients with a variety of pelvic floor disorders. Given that the gynecologic oncology survivor population has a high rate of pelvic floor disorders, patient flow from gynecologic oncology to urogynecology would be a natural and necessary referral pathway. However, there are few data on referral patterns of cancer survivors to urogynecology.

    One of the few studies on this topic examines a pre-treatment population. Robison et al conducted a prospective pilot study that screened women presenting with clinical early-stage endometrial cancer for symptoms of stress urinary incontinence and referred those who screened positive to urogynecology. This study found that 80% of patients who screened positive desired and obtained urogynecologic evaluation, half of which ultimately underwent concomitant oncologic and pelvic reconstructive surgery.46 While this review discusses survivorship, this study was included because it showcases a potentially high referral rate from gynecologic oncology to urogynecology. The high referral rate is in contrast to a 2–5% baseline rate of concomitant surgical interventions between gynecologic oncology and urogynecology in the oncologic literature.47 48

    In contrast, a retrospective study by Doyle et al, in which a screening questionnaire regarding pelvic floor dysfunction was given to all new patients at a United States university gynecologic oncology practice, reflected a far lower referral percentage. Of the 236 who screened positive, only 6.7% desired referral to urogynecology.49

    The prospective versus retrospective nature of these studies may account for the large difference in referral rates. A discussion regarding referral with an oncologist in the former pilot study may have a different impact than the survey question asking patients if they would like a referral. Given the strong relationship of survivors to their gynecologic oncologists, the disparate referral rates may reflect the power that focusing on pelvic floor disorders (or not) has on patient desire for referral.

    Barriers to Urogynecology Referral

    While there are limited data on referral rates, there are more data on patient and provider attitudes toward referral. Practical concerns feature in the discussion of barriers to referral. In the study by Doyle et al discussed earlier, survivors of gynecologic malignancy cited having had previous urogynecologic evaluation, financial concerns, and belief that gynecologic oncology treatment would resolve pelvic floor dysfunction as barriers to referral.49 An interview-based study of gynecologic oncology providers echoes the abovementioned concerns of survivors and cites lack of time and formalized referral pathways as referral barriers.37

    The lack of information given to patients about pelvic floor disorders, as discussed in previous sections, and the lack of emphasis placed on these sequelae in the survivor population is also a barrier to care.17 18 In semi-structured interviews, patients reported they had insufficient knowledge about treatment options, with nearly half feeling they would have benefited from referral to a subspecialist or from more information. Time pressure and a focus on oncology treatments rather than sequelae act as barriers to discussing pelvic floor disorders and also as barriers to referrals.19

    Lack of team coordination can also be a barrier to referral. Survivors of gynecologic malignancy cited lack of coordination with treatment team and misinformation as barriers to adherence with vaginal dilators and pelvic muscle exercises.50 Whether we discuss the management of pelvic floor disorders in general, referral patterns more narrowly, or specific pelvic floor disorder treatments, a thread of similar barriers emerges.

    Integrating referrals into survivorship care in gynecologic oncology is a promising avenue of study. Preliminary studies have shown promising results, and the option of referral fits with previously stated patient needs for individualized and flexible care. That said, data regarding referrals for pelvic floor disorder are limited, even more so when it comes to urogynecology referrals, and several barriers to referral have been identified. The desire for survivors to have integrated care also begs the question of how to deliver appropriate care while maximizing integrated care and minimizing structural barriers.

    Conclusions

    There is a need for pelvic floor disorder-related survivorship care in the gynecologic oncology patient population. Pelvic floor disorders are prevalent in the aging female population, and this is the stage in life at which most gynecologic malignancies are identified and managed.7–9

    Moreover, there is a need for an increase in survivorship sequelae care in the gynecologic oncology population. Several studies cite that patients want more information on pelvic floor disorders. The current framework for integrating survivorship sequelae care, survivorship care plans, have broad support but little evidence of improved outcomes. Integrated, flexible, and personalized care for pelvic floor disorders may meet patient care needs. Referrals should be considered as part of this care. Many barriers exist, however, to appropriately addressing gynecologic oncology sequelae and to referrals. These barriers represent an opportunity for improving our patient care.

    More study of both survivorship care plans in general, as well as how to incorporate pelvic floor disorder care into gynecologic oncology survivorship care, is needed to ensure that both content and mode of delivery of care meet patient needs.

    Ethics statements

    Patient consent for publication

    Ethics approval

    Not applicable.

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    Footnotes

    • Contributors All authors materially contributed to the manuscript development, writing, and/or editing. IM: conception/design, data acquisition/interpretation, drafting work, editing/reviewing work, final approval of work. MM: data acquisition/interpretation, editing/reviewing work, final approval of work. SN: conception/design, editing/reviewing work, final approval of work, supervision. CN: conception/design, editing/reviewing work, final approval of work, supervision.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.