Mental and emotional health effects of trauma

Receiving a gynecologic cancer diagnosis can lead to fear and anxiety that may traumatize or re-traumatize patients. Current research shows that mental health conditions, such as anxiety, depression, sexual quality of life, and post-traumatic stress disorder, are common in patients diagnosed with gynecologic cancer and may impact oncologic outcomes.25–33

In a qualitative study using online interviews with female patients with pelvic cancers, patients frequently brought up how changes to their sexual health and function resulted in symptoms of depression, anxiety, post-traumatic stress disorder, suicidal ideation, and body dysmorphia.25 They also noted that surgical changes to their gynecologic organs impacted their sexual and gender identity, causing low self-esteem, especially in vulvar and vaginal cancer patients, who may have changes to their vaginal canal length or removal of the clitoris.25 Another study with patients with endometrial, cervical, and ovarian cancer looking at sexual quality of life using the Sexual Quality of Life-Female (SQOL-F) questionnaire found that cervical cancer patients had significantly lower sexual quality of life scores in the psychosexual feelings and self-worthlessness categories.34

A survey study of 242 patients with early-stage gynecologic cancer showed that patients with cervical, vaginal, and vulvar cancer had higher post-traumatic stress disorder scores than those with endometrial or cervical cancer, as measured by the Post-Traumatic Stress Disorder Checklist for DSM-5.26 Patients with vaginal and vulvar cancer also demonstrated higher levels of distress and anxiety as measured by National Comprehensive Cancer Network Distress Thermometer, version 2.2016 and General Anxiety Disorder 7-Item (GAD-7), respectively.

Research has also shown that individuals with gynecologic cancer display higher rates of suicide in comparison to the general population and in comparison to individuals with non-gynecologic cancer.35 36 Ovarian cancer patients had the highest rate of suicide among the gynecologic malignancies.36 Other studies focused on the specific experiences of patients with ovarian cancer show that fear of cancer progression and anxiety regarding prognosis and death was at the forefront of their concerns.27–30 33 This indicates that more research is needed to compare the experiences of patients with different disease sites to understand how each malignancy and treatment regimen affects their mental health outcomes.

Behavioral and cognitive effects of trauma

In response to complex emotions related to a cancer diagnosis, mental health challenges, medical trauma, or the resurfacing of traumatic memories, many individuals resort to maladaptive behaviors as a means of escaping such distress, including substance use disorders and avoidance of triggers, including exams and visits.3 Patients with a history of trauma are at high risk for substance abuse, such as those with a history of adverse childhood experiences and interpersonal violence. Many patients with gynecologic cancers are at risk for opioid misuse, and further research is needed to understand how this relates to trauma history. In a single-center analysis of patients with cervical, uterine, and ovarian cancer, approximately 25% had risk factors for opioid misuse at the time of prescription, with cervical cancer patients most likely to have at least one risk factor present.37

To prevent re-traumatization, patients may also avoid locations or situations that may act as triggers. For example, an individual with a history of medical trauma or sexual abuse may cancel their gynecologic oncology appointment to avoid triggering interactions or exams. This can then lead to inadequate cancer treatment and neglect of a patient’s emotional and medical needs. Specifically important in cervical cancer, current data are conflicting regarding the impact of trauma on cancer screening compliance or general utilization of gynecologic care.38–42 Similarly, data are very limited in endometrial cancer patients who often undergo routine surveillance pelvic exams due to increased risk for vaginal recurrence. More research is needed to identify the behavioral impacts of traumatization and re-traumatization in this specific patient population.

Physical manifestations and symptoms of trauma

Gynecologic oncologic patients may encounter significant physical changes related to cancer treatment, including pain, menopause, sexual dysfunction, and the potential loss of fertility. Pain has a negative effect on a patient’s quality of life and may commonly present in patients with a history of sexual trauma or as neuropathic pain in women who have undergone radiation or surgery.25 30 Many women struggling with chronic pain often feel dismissed by healthcare professionals, which only serves to re-traumatize the patient.43

Sexual dysfunction related to gynecologic cancer therapy is extremely common, particularly among vulvar and vaginal cancer patients who undergo significant changes to their sexual anatomy.25 44–46 Radiation treatment, in particular, is known to cause scarring and vaginal narrowing that can result in painful sex, leading to anxiety, depression, guilt, and insecurity in their intimate relationships.25 One physical manifestation shown to be associated with emotional and sexual trauma as well as gynecologic cancer is vaginismus, which can cause additional pain, affect quality of life, and impact relationships.47 The complex relationship between trauma and gynecologic oncology underscores the need for trauma-informed practices, fostering an environment of understanding and accommodation that supports the patient’s unique challenges.

Definition and evidence

Trauma-informed care, as defined by SAMHSA, is “a systems-level approach that integrates trauma-informed practices (acknowledging that potentially traumatic exposures have taken place) throughout a delivery system” such as the healthcare system.4 It is a model of providing care to patients that creates a safe environment so survivors can receive necessary healthcare and rebuild their sense of control through these interactions, improving resiliency and overall health outcomes.48 Given the high prevalence of trauma within our society as well as among those with gynecologic cancer, it is reasonable to use universal precautions and treat every patient as if they have experienced a traumatic event.

The patient experience during every aspect of their gynecologic cancer journey, from diagnosis to treatment to surveillance, leaves room for further traumatization or re-traumatization. The diagnosis of cancer can come with intense or painful examinations and biopsies. Treatment can be accompanied by invasive and painful therapies. Surveillance can be accompanied by serial painful examinations, often exacerbated by physical and psychological effects from treatment. Thus, the patient’s experience of gynecologic cancer leaves room for the creation or amplification of trauma at many points.

Trauma-informed care is an effective, evidence-based program that provides significant benefits. A comprehensive systematic review of trauma-informed care programs from several disciplines, including healthcare, child welfare, justice, and education, highlighted common outcomes such as reduced trauma symptoms, decreased behavioral issues, improved mental health, diminished provider burnout, improved provider morale, and lower staff turnover.49 Within the healthcare settings, nurses, allied health professionals, primary care physicians, emergency medicine physicians, as well as mental health providers such as psychiatrists, psychologists, social workers, and therapists, were the primary members to initiate trauma-informed care.49 Most health-related trauma-informed care programs were introduced during initial primary care visits, mainly through screening tools and actively discussing patient preferences during interviews and exams.49

Studies examining trauma-informed care in counseling services and substance abuse treatment further supported these positive results, demonstrating a decrease in substance use severity, improved mental health and trauma symptoms, as well as a correlation with extended residential treatment stays and improved overall outcomes.50 51 Surveys were conducted among adults who sought support for intimate partner violence from various services such as hotlines, shelters, counseling, and medical care. These surveys specifically targeted individuals who identified as lesbian, gay, bisexual, transgender, queer, or intersex (LGBTQI) and were aimed at identifying associations between trauma-informed care and mental health.52 They found that individuals who perceived greater amounts of trauma-informed care in their care reported greater empowerment, improved emotion regulation, and reduced social withdrawal.52 Additional information regarding trauma-informed care for LGBTQI individuals can be found in the section on Special Populations. These findings underscore the effectiveness of trauma-informed care practices in fostering better outcomes across diverse contexts.

Basic principles of a trauma-informed care approach

SAMHSA has developed a framework that can be applied to any trauma-informed practice model. They outline four fundamental points, the ‘4 R’s,’ on which to build a trauma-informed care model: (1) realize the effect of trauma and understand paths for recovery, (2) recognize the signs of trauma, (3) respond to trauma by fully integrating knowledge into policies and procedures, and (4) resist re-traumatization.4 The supplemental table proposes practical ways to implement these in a gynecologic oncology healthcare setting (Online supplemental table). We then expand on re-traumatization and provide examples of tangible strategies to improve daily behavior and language to actively resist re-traumatization (Table 1), acknowledging that patients may have experienced certain behaviors, words, or phrases during traumatic experiences. SAMHSA also outlines six key principles that guide a trauma-informed approach to care: (1) safety, (2) trustworthiness and transparency, (3) peer support, (4) collaboration and mutuality, (5) empowerment and choice, and (6) cultural, historical, and gender issues.4 We provide some suggestions for how to implement these principles into the practice of gynecologic oncology (Table 2).

Building a team

At the core of many implementation guides is diverse, collaborative leadership capable of holding themselves, their department, and their institution responsible for instigating change.3 4 53 54 It is crucial to collaborate with multiple departments and individuals with different backgrounds and skill sets such as psychiatrists, social workers, therapists, or palliative care specialists.4 Including a patient advocate in leadership can also encourage continuous, patient-centered feedback to guide decision-making.4

Baseline assessment

Following the creation of a team, it is essential to evaluate the status of the institution’s trauma-informed care protocol, its effect on staff and patients, and any potential obstacles that may need to be resolved before implementation.3 The Practical Guide for Implementing a Trauma-Informed Approach by SAMHSA provides a comprehensive framework for conducting a baseline assessment of a program or institution.3 This assessment can display the necessity for improved trauma-informed practices and highlight initial areas of weakness or concern. For example, according to interviews with physicians, a few reasons why they may not discuss trauma and sexual dysfunction during clinical visits with patients include lack of confidence, training, time, space, and patient continuity.25 By elucidating these issues, institutions focus their efforts on collecting resources and training providers in trauma-informed care practices. Another potential barrier is the lack of patient trust, which racial or socioeconomic disparities can further dismantle.53 55 This issue encourages implementors to reconsider their policies and training that may enable systemic racism and inequity.

From an economic perspective, the costs associated with implementing trauma-informed care programs are also an important consideration and potential barrier, especially in low-resource settings. A 2016 study of a state child welfare system revealed screening costs of approximately $74 per screen and an expenditure of around $1213 per caseworker.56 Another study focusing on trauma-focused cognitive behavioral therapy found that the costs and time required for therapy were not significantly different from non-trauma-focused sessions, estimating an impressive overall cost-effectiveness of 96% for the program.57 Identifying these obstacles enables an institution to target its implementation steps toward the specific needs of the populations it serves.

Policy and environmental change

After establishing a team and conducting a needs assessment, the next step is revising the foundational policies and physical environment to accurately convey the institution’s values to patients and providers. Changing harmful policies or creating new ones helps shape the trauma-informed care climate of an institution and reinforce its priorities.4 Similarly, creating a welcoming, non-judgmental, and private physical environment can show patients that the institution cares about them and that providers will be receptive to their needs.4 Displaying resources such as pamphlets and posters in waiting rooms can also positively impact a patient’s experience, allowing them to anonymously acquire information or support.25

Training

Next, it is vital to integrate trauma-informed care into all levels of training throughout the hospital. As mentioned previously, interviews with physicians revealed that while they recognize the importance of sexual health and the capacity for gynecologic malignancy treatment to cause sexual dysfunction, their concerns about lack of training on the subject resulted in them not inquiring about the subject at all.25 For example, dilators are recommended for the treatment of vaginal stenosis. Still, due to the lack of significant training on how they work or readily available resources in their clinic, these physicians hesitated to offer this treatment.25 Additional training is necessary to increase providers' comfort in discussing sexual health, but there are endless options for incorporating this information into their education.

A study conducted within an internal medicine department highlighted the feasibility of incorporating trauma-informed care into an existing educational half-day through a mandatory 3-hour workshop.58 Additionally, a 2-hour didactic and role-playing trauma-informed care module given to obstetric residents found that the role-playing component was most useful in assessing residents’ comfortability with the material and their ability to navigate these conversations with patients.59 This technique may be valuable for all learning levels to practice using trauma-informed language and behaviors.

Patient screening

Screening for trauma in gynecologic oncologic patients can be implemented by integrating it into the standard of care through targeted approaches. Before discussing screening methods, it is crucial to understand the feasibility of gynecologic oncologists finding time and resources to identify patients with trauma and support them. A study assessing the use of a 10-item Adverse Childhood Event survey during family medicine visits revealed that clinicians felt it did not interfere with the clinic visit and that most surveys added only 5 minutes or less to the visit.60 This suggests that a short review of trauma risk factors could increase clinician awareness of past traumatic history without hindering patient care and would apply to settings with low resources and limited staffing.

Many validated instruments exist to screen patients for trauma within a clinical setting. The Trauma Screening Questionnaire is a 10-item questionnaire that may be utilized to assess all types of traumatic stress, and a Trauma History Screen is a 14-item self-report that asks about 13 specific traumatic events.61 62 Another method is to look for signs or symptoms of trauma sequelae such as anxiety, depression, post-traumatic stress disorder, or substance use disorders using conventional screening tools such as the Generalized Anxiety Disorder 7-item (GAD-7), Patient Health Questionnaire (PHQ-9), the Primary Care Post-Traumatic Stress Disorder Screen for DSM-5 (PC-PTSD-5), and he Tobacco, Alcohol, Prescription medications, and other Substance (TAPS) Tool.63–66 In addition, screening for risk factors of trauma, such as interpersonal violence or social determinants of health, when indicated, can elucidate problems that may not initially come up during the patient interview.67

All of the surveys listed can be self-administered as a virtual or in-person option prior to the patient's appointment, saving the site from needing to hire additional personnel, which is helpful in low-resource settings. The United States Preventative Services Task Force (USPSTF) recommends intimate partner violence screening yearly, and thus the authors recommend the same interval for other trauma screening.68 Integrating trauma screening into the standard of care for gynecologic oncologic patients through targeted approaches and conventional screening tools offers a feasible way to enhance clinician awareness of past traumatic history without compromising patient care.

Lesbian, gay, bisexual, tansgender, queer, intersex (LGBTQI)

Trauma-informed care tailored to LGBTQI individuals is essential for creating inclusivity and equity in our healthcare systems. This unique population faces additional levels of trauma, including prejudice, discrimination, and gender dysphoria. Additionally, they also have a disproportionately high rate of trauma due to adverse early-life experiences, interpersonal violence, and hate crimes.69 70 These barriers can lead to decreased cancer screening, a higher rate of substance abuse, and a higher rate of mental health disorders, including anxiety, depression, and post-traumatic stress disorder.71–74 An essential step in improving how the LGBTQI patient population is cared for is changing how we talk to patients, discuss patients during rounds, and document patient details in the electronic medical record.

When first meeting patients, an opportunity arises to inquire about their pronouns, how they address themselves, and the terminology they use for their body parts. These questions on intake medical forms can ensure these data are documented in the patient’s chart for future reference and allow for avoiding re-traumatization from gender dysphoria.75 During such discussions regarding biological sex, using the term ‘sex assigned at birth’ can affirm their experience and how they currently identify.75 When examining patients and describing findings, terms such as ‘healthy’ should be used rather than ‘normal.’75 Another way to create a more gender-inclusive and inviting environment is to avoid using gender-specific nomenclature in the names of hospitals, procedures, or therapies, such as ‘Hospital for Women.’75 It is also vital to be aware of a patient’s past experiences and how they may affect their outlook on their experience with a gynecologic oncologist and cancer treatment.

Many sexual and gender minorities have struggled to acquire insurance coverage for gender-affirming hormones or procedures despite their medical necessity.76 Additionally, many transgender individuals have faced refusal of care or inadequate care, which can create a sense of distrust and may cause fear of future healthcare interactions.76 Implementing small changes in communication and curiosity about a patient’s experience can significantly improve patient trust and comfortability and create a gender-inclusive healthcare environment.

Racial and ethnic minorities

Pervasive disparities exist in gynecologic oncology that impact the care of patients, such as race and ethnicity, insurance status, socioeconomic status, and geography.77–80 Racial disparities and other social determinants of health have been shown to impact every facet of gynecologic cancer care, including cancer screening, survival, treatment planning, end-of-life care, and survivorship.77–80

For racially diverse populations, systemic healthcare disparities, cultural factors, and historical injustices can create unique challenges and additional layers of trauma. Racial and ethnic minorities are exposed to racial trauma in addition to all other types of trauma.81 Additionally, racial and ethnic minorities have a higher prevalence of childhood sexual trauma.82 A recent study also showed that individuals who experienced high levels of trauma and discrimination were more likely to be in the racial minority subgroup of Black, American Indian, or Alaska Native than Hispanic, Asian American, and Pacific Islander.83 Interviews of patients, caregivers, and providers in Karnataka, India showed that stigma surrounding a cervical cancer diagnosis was based on fear of cancer transmission, fear of eventual morbidity or mortality, and fear of being at fault for their diagnosis.84 There are several steps institutions can take to move towards racial health equity. For example, implicit bias is important to consider, and implicit bias training can increase awareness of these issues and encourage individual and systemic reflection.85

Patients experiencing homelessness

Homelessness among patients is a complex issue intertwined with many challenges. Patients experiencing homelessness face several barriers, including a disproportionate amount of trauma, discrimination, and economic hardship. A small cohort study comparing women who have experienced sexual trauma to those who have not revealed a stark contrast: 70% of trauma-exposed women struggled to secure housing versus 27% of those without trauma history.86 Additionally, qualitative research involving interviews with women experiencing homelessness and healthcare providers showed that two of the critical barriers obstructing these individuals' access to reproductive healthcare were judgment and discrimination and logistical and financial challenges.87 Further, in interviews centered around the intersection of trauma and cervical cancer screening, it was evident that women with a history of trauma expressed fear of re-traumatization as a primary reason for their reluctance to undergo cancer screening.88 Additionally, life stressors, compounded by homelessness, were identified as significant factors contributing to the discontinuation of care in cases of abnormal pap smears.89

Survivors of intimate partner violence

Various factors can contribute to stress in relationships following a gynecologic cancer diagnosis, including alterations in sexual function, financial concerns, infertility, altered emotional or physical support needs, and body dysmorphia.47 These elements alone can strain relationships, but patients may also be grappling with stress associated with current or past intimate partner violence. The incidence of intimate partner violence or sexual abuse in patients with gynecologic cancer has been reported to be up to 31% to 65%, with higher rates typically observed in the LGBTQI community, ethnic minorities, and homeless individuals.23 52 90–93 Implementing trauma-informed care in this population involves thorough screening and adopting a non-judgmental approach. Screening should be conducted one-on-one, asking any visitors who accompanied them to step out momentarily. Using preparatory statements to frame the questions and emphasizing that screening is a routine procedure can help reduce feelings of shame or being singled out.

Identifying signs or symptoms of intimate partner violence poses challenges, as disease and treatment side effects may mimic indicators of intimate partner violence. For instance, thrombocytopenia can manifest as petechiae, but physical violence can produce similar markings.94 Similarly, patients may present with a broken arm and attribute it to a fall caused by fatigue from chemotherapy or frail bones from surgically induced menopause. However, a study found that in 62 women presenting to a Level I trauma center, up to one-third of isolated ulnar fractures were related to intimate partner violence, emphasizing the need for universal screening and its inclusion in the differential diagnosis.95 Finally, if intimate partner violence is disclosed, it is imperative to maintain a non-judgmental stance, explore potential safety plans, and avoid pressuring the patient to end their relationship.

Secondary trauma of healthcare workers

The field of gynecologic oncology presents unique challenges that can contribute to the development of secondary trauma among healthcare workers. The emotional toll of supporting patients through difficult decisions, complex treatments, and sometimes devastating outcomes can contribute to symptoms of secondary trauma, such as heightened stress, emotional exhaustion, and compassion fatigue. Surveys distributed to members, fellows, and trainees of the Royal College of Obstetrics and Gynaecologists (RCOG) revealed that the most common events perceived as traumatic were patient death and hemorrhage.96

Recognizing and addressing the secondary trauma experienced by healthcare workers in gynecologic oncology is crucial to ensuring their well-being and, in turn, their ability to provide compassionate and effective care to patients facing these challenging diagnoses. The Secondary Traumatic Stress Scale can be used scale to measure intrusion, avoidance, and arousal in individuals with indirect exposure to traumatic events.97 The International Society for Traumatic Stress Studies (ISTSS) (with funding from the Office for Victims of Crime) also published the Vicarious Trauma Toolkit, a free resource for implementing a vicarious trauma-informed organization and providing resources for staff.98 Implementing support mechanisms, such as debriefing sessions, mental health resources, and professional development opportunities, can play a vital role in mitigating the impact of secondary trauma on healthcare professionals in this specialized field.