Suffering Compounded: The Relationship between Abuse History and Distress in Five Palliative Care Domains

Abstract

Background:

Research with breast cancer patients suggests that abuse survivors experience more psychological distress and disorders, particularly depression and anxiety, than patients without abuse histories. However, we do not yet understand the impact of abuse on other palliative care domains for individuals with other cancer types.

Objectives:

This study explores the relationship between past abuse and distress in a group of cancer patients referred for palliative care. This study also explores differences in distress level and likelihood of meeting diagnostic criteria for major depression and generalized anxiety disorder between patients with and without abuse histories.

Setting/Subjects:

Data were from 164 new, palliative care outpatients who completed an initial clinician-administered assessment and the James Supportive Care Screening patient self-report.

Design:

Multivariate analyses of variance were conducted to explore differences between patients who reported an abuse history and those who did not on the number of items endorsed and associated distress on five palliative care domains. Chi-square tests were conducted to identify differences in diagnosis of depression and anxiety between patients with and without abuse histories.

Results:

Twenty-eight percent reported abuse histories. Patients with abuse histories endorsed more physical problems, psychological concerns, and spiritual concerns and greater distress related to psychological and spiritual concerns than patients without abuse histories. Patients with abuse histories more frequently received diagnoses of major depression disorder and generalized anxiety disorder.

Conclusions:

These differences underscore the impact of abuse on the adjustment of cancer patients referred for palliative care. Assessment of patient abuse history by palliative care teams and referral for psychological treatment may help reduce patient distress.

Introduction

Having a history of abuse is not uncommon among patients. In a community HMO sample of 9,508 patients, 11% reported a history of emotional abuse, 11% of physical abuse, and 22% of sexual abuse.¹ Individuals with abuse histories have a higher number of medical diagnoses and report more physical and psychological symptoms than peers without abuse histories.^2–5 Physical symptoms associated with abuse include pain, headaches, fatigue, obesity, and shortness of breath.^6–8 Adult women with histories of childhood sexual or physical abuse are more likely to report higher numbers of physical symptoms than women with no abuse history, and more frequently use health care services.⁹ Frequent mental health sequelae include posttraumatic stress disorder (PTSD), anxiety, fear, feelings of self-blame, guilt, or shame, depression, eating disorders, substance abuse, and increased suicide risk.^10–14

Given the frequency of abuse history among patients and the increased physical and psychosocial symptoms, researchers have begun to focus on the impact of abuse on patient adjustment to cancer.^15–17 Cancer patients may experience distress in each of the palliative care domains: (1) structure and processes; (2) physical; (3) psychological and psychiatric; (4) social; (5) spiritual, religious, and existential; (6) cultural; (7) care of the imminently dying patient; and (8) ethical and legal. Understanding the impact of abuse on patient distress is important in the provision of quality palliative care. Psychological distress, especially depression and anxiety, are more common among cancer patients than in the general population, with prevalence rates ranging from 22% to 29% for depression¹⁸ and 10% to 30% for anxiety,¹⁹ compared to 4% to 17% for depression^20,21 and 4% to 7% for anxiety^22,23 in the general population. Spiritual distress is also commonly encountered, including religious doubts or negative encounters with others who share religious views,²⁴ and is often associated with increased psychological distress.²⁵ Further, after a cancer diagnosis patients may perceive themselves differently and may be viewed differently by others which can affect the composition of the patient's support network.²⁶ Financial concerns are also problematic (e.g., paying for medications and medical bills) for patients with chronic illness.²⁷ Patients may delay or forgo treatments due to cost and may struggle to pay for housing, food, or other daily needs. At end of life, patient distress related to meaning and purpose can be more distressing than physical symptoms.²⁸

Following a cancer diagnosis, patients may be at greater risk of being a victim of abuse. The diagnosis may serve as a “unique provocation of violence,”²⁹ due to the perceived lack of control over the cancer by a controlling partner. Also, the disease itself may present the possibility of abandonment by the (violent) partner of the patient.²⁹ In addition, cancer diagnosis and treatment may re-trigger the patient's cognitive and emotional responses to past abuse experiences that cause marked distress.¹⁵ Patients with abuse histories are also more likely to develop maladaptive coping strategies (e.g., avoidance of distressing situations; alcohol or illicit drug use), which can negatively impact adjustment to cancer.^30,31

A history of abuse may increase a patient's vulnerability to cancer-related distress. Intrusive and avoidance symptoms associated with PTSD are related to the number of past traumas in patients' lives.^15,32 After surgery Salmon and colleagues¹³ examined the relationship between breast cancer–related traumatic stress symptoms and childhood abuse history in a group of 355 women and found that emotional distress, posttraumatic stress, self-blame, and bodily shame were more common in women with childhood abuse histories than those without past traumas. For women who reported more than one form of abuse in their history, these problems were more frequent, suggesting a possible dose-response relationship between the number of abuse experiences and the level and types of distress. These findings suggest that abuse survivors experience greater prevalence of psychological distress and disorders, particularly depression and anxiety, following cancer diagnosis. These relationships may also exist among nonbreast cancer survivors, though less data are available for patients with other types of cancer.

This study expands on previous research by exploring the impact of past abuse experiences on cancer patients referred for palliative care. The number of patient concerns and associated distress across five of the eight palliative care domains: (1) structure and processes, (2) physical, (3) psychological and psychiatric, (4) social, and (5) spiritual, religious, and existential were explored to better understand the multidimensional relationship between abuse and distress. Two additional domains (i.e., cultural, ethical and legal) were not assessed due to lack of available measures and the final domain (i.e., imminent death) was not assessed as this was an ambulatory outpatient clinic study. We hypothesized that patients with abuse histories would report: (1) a greater number of concerns in each of the five palliative care domains and (2) higher levels of distress compared to patients without abuse histories. We also hypothesized that patients with abuse histories would be more likely to meet criteria for major depressive disorder (MDD) and generalized anxiety disorder (GAD).

Methods

Study design

This quasi-experimental study assessed the impact of any abuse (i.e., emotional, physical, sexual) or neglect experienced during a patient's lifetime on five palliative care domains as well as on the diagnosis of MDD and GAD in a sample of palliative care outpatients. This study was approved by the institutional review board of our university-based medical center.

Participant selection and procedures

In 2010, 164 new, consecutive palliative care outpatients completed a standardized, clinician-administered initial psychosocial assessment and packet of symptom questionnaires as a part of their intake process. This clinician-administered assessment was completed by a licensed clinical psychologist, licensed social worker, or postdoctoral psychology fellow in a 60 to 90-minute individual interview session.

Measures

Initial psychosocial assessment

This structured psychodiagnostic interview uses the Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, fourth addition criteria to identify patients meeting diagnostic criteria for MDD or GAD.³³ Given that many of the patients had advanced cancer, Endicott criteria for diagnosis of depression were used.³⁴ Given that physical symptoms related to cancer and cancer treatment overlap with somatic symptoms of depression (e.g., low appetite, weight loss, fatigue, poor concentration) Endicott criteria substitute psychological symptoms (tearfulness, social withdrawal, pessimism, lack of reactivity) for somatic symptoms decreasing false positive diagnoses of depression within an oncology patient population. Diagnoses of MDD and GAD were coded into dichotomous variables (i.e., meets criteria versus does not meet criteria). To assess abuse history, patients were asked by the interviewer, “Do you have any history of emotional, physical, or sexual abuse? (yes/no)” and “Do you have any history of either emotional or physical neglect? (yes/no).” We used one dichotomous variable to represent abuse history including any experience of abuse or neglect.

James Supportive Care Screening

The James SCS³⁵ is a 49-item measure used to identify patient symptoms, problems, and concerns across six subscales: health care decision making/communication issues (4 items), physical symptoms (17 items), emotional concerns (14 items), social/practical problems (7 items), spiritual problems (4 items), and cognitive concerns (3 items). For each problem and symptom the patient indicates whether it has been problematic during the past week and rates how much distress it has caused (0=none 1=mild, 2=moderate, 3=severe). For all JSCS subscales, a larger number of items or higher level of distress indicates greater difficulties or distress experienced in that domain. Summed subscale distress ratings were used in the analyses. The five domains of palliative care—(1) structure and processes; (2) physical; (3) psychological and psychiatric; (4) social; and (5) spiritual, religious, and existential—were represented in the current study by the following James SCS subscales: communication and decision-making concerns (α=0.74); physical symptoms (α=0.86); emotional concerns (α=0.94); social/practical problems (α=0.86); and spiritual problems (α=0.86), respectively.

Analyses

Descriptive analyses were used to characterize abuse experienced by this sample. ANOVAs and chi-squares were used to evaluate potential differences on participant demographics (e.g., gender, age, ethnicity, religion, marital status) and disease characteristics (e.g., cancer type, disease status) between abuse and no-abuse groups. The five domains were simultaneously analyzed in two separate multivariate analyses of variance (MANOVAs). One MANOVA examined differences in the number of concerns endorsed and the other examined differences in reported distress. MANOVA was selected as the domains were significantly intercorrelated (r=0.38 to 0.68). In each of the two MANOVAs, post hoc analyses were conducted to clarify significant differences in the omnibus test. Two chi-square tests were conducted to identify differences in rates of MDD and GAD.

Results

Group demographic and disease comparisons

About half of the participants were female, almost half were married, and the majority were Caucasian, with an average age of 51 years (see Table 1). The most frequent cancer diagnoses included head and neck, gynecologic, hematologic, lung, and breast. Approximately half of the patient sample (51%) presented to palliative care with metastatic or recurrent disease. There were no significant differences in demographic or disease variables between patients with abuse histories and those without.

Table 1.

Demographic and Disease Characteristics of Group with No Abuse History versus Group with No History of Abuse

Variable	No abuse history (N=118) M (SD), N (%)	History of abuse (N=46) M (SD), N (%)	p-value
Age	51.4 (11.6)
	51.8 (11.5)	50.4 (11.9)	p=0.48
Gender			p=0.14
Female	55 (46.6%)	28 (60.9%)
Male	63 (53.4%)	18 (39.1%)
Ethnicity			p=0.23
African American	21 (17.8%)	4 (8.7%)
Caucasian	94 (79.7%)	41 (89.1%)
Other	3 (2.5%)	1 (2.2%)
Education level			p=0.08
No completed degree	24 (21.2%)	19 (41.3%)
High school graduate	46 (40.7%)	15 (32.6%)
Some college	22 (19.5%)	7 (15.2%)
Postsecondary degree	21 (18.6%)	5 (10.9)%
Marital status			p=0.41
Single	18 (16.1)	11 (24.4%)
Divorced/Separated	28 (25%)	14 (31.1%)
Married	57 (50.9%)	17 (37.8%)
Widowed	9 (8%)	3 (6.7%)
Religion			p=0.40
Baptist	26 (22.6%)	11 (25%)
Protestant (unspecified)	25 (21.7%)	13 (29.5%)
Nondenominational	14 (12.2%)	8 (18.2%)
Not affiliated	22 (19.1%)	6 (13.6%)
Other affiliation	28 (24.3%)	6 (13.6%)
Cancer diagnosis			p=0.15
Breast	5 (4.2%)	6 (13%)
Gynecologic	10 (8.5%)	7 (15.2%)
Head and neck	40 (33.9%)	12 (26.1%)
Hematologic	12 (10.2%)	4 (8.7%)
Lung	9 (7.6%)	5 (10.9%)
Other cancer	42 (35.6%)	12 (26.1%)
Disease status			p=0.83
Local disease	20 (17.9%)	9 (20.5%)
Recurrence	7 (6.3%)	2 (4.5%)
Metastatic	53 (47.3%)	18 (40.9%)
Remission	32 (28.6%)	15 (34.1%)

Abuse history characteristics

Of the patients assessed, 28% reported abuse histories (see Table 2). Specifically, 10% of patients reported histories of emotional or physical neglect, 20% emotional abuse, 16% physical abuse, and 9% sexual abuse. The majority of patients who reported abuse histories were female (61%) and Caucasian (89%). Neglect experiences ranged from “no hugs or I love yous” to “raising myself, nobody cared.” Experiences of emotional abuse ranged in severity from “being told that I was a sissy and that I was an accident or mistake” to not being allowed to speak with friends or family members. Examples of physical abuse included “getting smacked in the face a few times” and “being punched in the stomach daily while pregnant.” Experiences of sexual abuse ranged in severity from an older male baby sitter making the child put his or her hands down his pants to being held down and raped by a male family member repeatedly over a 5-year period.

Table 2.

Types of Abuse Experiences Reported by Gender

	Female N=28 N (%)	Male N=18 N (%)
Emotional neglect	5 (6.3%)	8 (9.9%)
Physical neglect	1 (1.3%)	2 (2.5%)
Emotional abuse	22 (27.8%)	10 (12.3%)
Physical abuse	17 (21.5%)	9 (11.1%)
Sexual abuse	11 (13.6%)	4 (5.2%)
__________________	__________	__________
Total number of abuse types experienced
1 type	7 (8.4%)	8 (9.9%)
2 types	14 (16.9%)	5 (6.2%)
3 types	7 (8.4%)	5 (6.2%)

No participant reported more than 3 types of abuse.

Differences in numbers of symptoms and problems

A MANOVA was conducted to explore differences between patients with and without histories of abuse on the number of concerns identified in each of the five palliative care domains. Statistically significant differences were found between patients with and those without abuse histories on the combined five variables, F(5, 108)=3.77, p<0.01; Wilks' lambda=0.85; partial eta squared=0.15 (see Table 3). When results for each of the dependent variables were considered, patients differed significantly in the number of physical problems F(1, 114)=4.72, p=0.03; partial eta squared=0.04, psychological concerns F(1, 114)=10.71, p=0.001; partial eta squared=0.09; and spiritual concerns F(1, 114)=11.83, p<0.01; partial eta squared=0.07. Patients with abuse histories reported more physical problems (M=8.76, SD=0.69) than patients without abuse histories (M=7.03, SD=0.40). Similarly, patients with abuse histories endorsed more psychological concerns (M=6.61, SD=0.71) than those without abuse histories (M=3.92, SD=0.41. Finally, patients with abuse histories endorsed more spiritual concerns (M=1.31, SD=0.22) than those without abuse histories (M=0.57, SD=0.13).

Table 3.

Manova Examining Differences in Number of Symptoms and Concerns Reported by Patients

Variable	No abuse history (N=118) M (SD)	History of abuse (N=46) M (SD)	Score Range	Univariate F	Partial η²	p-value
Structure and Process	0.69 (1.05)	0.72 (1.07)	0–3	0.02	0.00	p=0.90
Physical	7.03 (3.71)	8.76 (3.69)	0–16	4.72	0.04	p=0.03^*
Psychological	3.92 (3.75)	6.61 (4.01)	0–13	10.71	0.09	p=0.001^***
Social	1.69 (2.10)	2.47 (2.30)	0–7	2.81	0.02	p=0.10
Spiritual	0.57 (1.08)	1.31 (1.37)	0–3	8.85	0.07	p=0.004^**

p<0.05, ^**p<0.01, ^***p≤0.001

Differences in patient distress levels

A MANOVA was conducted to explore the differences between patients with and without abuse histories on summed levels of distress reported in the five palliative care domains. Statistically significant differences were found between patients with and without abuse histories on the combined five variables, F(5, 94)=4.74, p=0.001; Wilks' lambda=0.80; partial eta squared=0.20 (see Table 4). When the results for each of the dependent variables were considered separately, patients differed significantly on psychological distress F(1, 98)=16.72, p<0.001; partial eta squared=0.15 and spiritual distress F(1, 98)=7.82, p=0.01; partial eta squared=0.07. Patients with abuse histories reported greater psychological distress (M=13.57, SD=10) than patients without abuse histories (M=5.79, SD=7.58). Similarly, patients with abuse histories reported greater spiritual distress (M=1.64, SD=2.27) than patients without abuse histories (M=0.56, SD=1.43).

Table 4.

Manova Examining Differences in Summed Patient-Reported Distress in Each Palliative Care Domain

Variable	No abuse history (N=118) M (SD)	History of abuse (N=46) M (SD)	Score range	Univariate F	Partial η²	p-value
Structure and process	0.84 (1.65)	1.24 (2.07)	0–9	0.97	0.01	p=0.33
Physical	12.02 (8.31)	15.73 (8.43)	0–48	3.71	0.04	p=0.06
Psychological	5.79 (7.58)	13.57 (10)	0–39	16.72	0.15	p=0.00^**
Social	3.04 (4.46)	3.74 (4.15)	0–21	0.47	0.01	p=0.49
Spiritual	0.56 (1.43)	1.64 (2.27)	0–9	7.82	0.07	p=0.01^*

p<0.05, ^**p<0.001

Differences in patient anxiety and depression diagnoses

Within this patient sample, 48% met Endicott diagnostic criteria for MDD and 48% met DSM-IV criteria for GAD. A chi-square test examined differences in the likelihood of patients with and without abuse histories to meet criteria for MDD. The percentage of patients diagnosed with MDD differed significantly based on reported abuse history, χ²(1, N=134)=7.97, p=0.01. Patients with abuse histories were more likely to meet MDD criteria (67%) than patients without abuse histories (40%).

A second chi-square test examined differences in the likelihood of patients with and without abuse histories to meet criteria for GAD. The percentage of patients diagnosed with GAD differed significantly based on reported abuse history, χ²(1, N=164)=6.18, p=0.02. Patients with abuse histories were more likely to meet criteria for GAD (63%) than patients without abuse histories (42%).

Discussion

The current study explored differences in both the number of concerns and intensity of distress in the five domains of palliative care, as well as differences in the likelihood of meeting criteria for MDD and GAD, between patients with and without abuse histories. Results were consistent with prior research suggesting that cancer patients with an abuse history are more likely to experience distress and psychological symptoms than patients without a history of abuse.^15,16,36 Patients with abuse histories endorsed not only a greater number of symptoms on the psychological and spiritual domains but also reported greater distress related to those concerns. Patients with abuse histories were also more likely to be diagnosed with MDD or GAD than patients without an abuse history. While patients with abuse histories also reported a greater number of physical problems, they were not more distressed by these symptoms. This lack of difference in distress related to physical symptoms in this sample may be due in part to the advanced disease of the cancer patients, including high levels of pain and other symptoms.

The differences in both reported concerns and intensity of related distress between patients with and without abuse histories underscores the impact that past abuse may have on patients' distress when facing advanced disease. Individuals with abuse histories often experience subsequent difficulties coping with distressing life events, and may either overuse maladaptive coping strategies (e.g., avoidance of distressing situations; alcohol or illicit drug abuse) or underuse adaptive coping styles.^{37, 38} It is possible that patients without an abuse history have greater resilience or are less likely to use maladaptive coping strategies than those who have abuse histories. Patients with advanced disease may also be questioning and meaning making as they review their life histories³⁹ and this process may be more distressing for those with abuse histories.

A potential challenge in treating advanced cancer patients with histories of abuse is the time and energy available for mental health treatment. Cognitive-behavioral therapy (CBT) has been well established as an effective, evidence-based psychological treatment for MDD and GAD.⁴⁰ CBT for MDD generally requires 14 to 16 sessions, but symptom remission can occur in 8 to 12 sessions.^41,42 CBT for GAD typically requires 12 sessions.⁴³ It may be possible to utilize aspects of CBT in a time-limited fashion with advanced cancer patients. Stress inoculation training (SIT),^44,45 including deep breathing and muscle relaxation, may also reduce distress and anxiety. Patients may also benefit from learning distress tolerance strategies to better manage feelings of distress and move toward overcoming avoidance coping (e.g., not attending a treatment or physician's appointment because of anxiety). While this study provides some initial findings regarding the relationship between past abuse and cancer patients' distress, additional research is needed to gain a more detailed understanding of patient distress in order to best inform treatment.

One limitation of the current study is the use of a single item to assess patient abuse history. Because of the number of items in our initial psychosocial assessment (272 items), we elected to capture abuse history using only a single item. Since study completion, our assessment has been revised to use behaviorally worded items asking about each specific abuse type (e.g., Has anyone ever repeatedly said things to hurt you, make you feel embarrassed, guilty, or ashamed, threatened you, or said things that made you feel afraid?) as recommended in trauma literature to best capture patient abuse experiences.^5,46 Future studies in this area should utilize similar behaviorally based questions or questionnaires to supplement information about abuse history to gather during the clinical interview (e.g., Childhood Trauma Questionnaire,⁴⁷ Composite Abuse Scale⁴⁸).

Future studies are needed to address additional limitations. First, patients were primarily Caucasian and middle-aged, so these results may not be generalizable to a more ethnically diverse population of patients who are younger or older. Second, patients' abuse histories were not identified as occurring at a specific time in life (e.g., childhood, adolescence, adulthood); therefore, it is unclear how the timing of the abuse relative to the cancer diagnosis may impact distress. Future studies should also evaluate the timing and dose-response relationship of abuse as well as the impact of abuse on other common trauma outcomes such as PTSD. Finally, we did not examine separately if patients were currently in an abusive relationship as we did not have a sufficient number of patients reporting current domestic violence. Current abuse may increase patient problems and distress ratings more than remote childhood abuse history. This study demonstrates the important relationship between a history of abuse and patient self-reported problems, distress, and psychological diagnosis. Patients who have experienced abuse prior to or during their cancer journey demonstrate greater vulnerability and deserve more intensive research and clinical attention. Palliative care teams can better address these vulnerabilities via consistent assessment of patient abuse history and referrals for psychological treatment.

Footnotes

Acknowledgments

We gratefully acknowledge our undergraduate research staff: Jessica Frantz, Susan Kaltsas, Matthew Minotti, Jason Polder, Katherine Slaven, Kimberly Sycks, and Rachel Weiskittle.

Author Disclosure Statement

No competing financial interests exist.

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