Abstract
Patients with pelvic pain are often told that their pain is “all in their head.” In many years of seeing patients for pelvic pain I have never seen one who did not have an organic reason for pain. Often patients with chronic pain, especially pelvic pain, may develop secondary depression and anxiety but neither of these conditions alone is responsible for their pain. Patients who are unable to have intercourse because of pain fear loss of the partner and become especially anxious. Additionally, because of the very personal nature of their pain they are often not able to discuss their condition with any friends or family members. It is very important to believe that the patient’s pain is real and not voice any doubts, especially in the presence of a partner. Treatment of coexisting psychological disorders such as anxiety or depression it is very important in patients with pelvic pain.
Patients with pelvic pain are often told that their pain is “all in their head.” In many years of seeing patients for pelvic pain I have never seen one who did not have an organic reason for pain. Often patients with chronic pain, especially pelvic pain, may develop secondary depression and anxiety but neither of these conditions alone is responsible for their pain. Patients who are unable to have intercourse because of pain fear loss of the partner and become especially anxious. Additionally, because of the very personal nature of their pain they are often not able to discuss their condition with any friends or family members. It is very important to believe that the patient’s pain is real and not voice any doubts, especially in the presence of a partner. Treatment of coexisting psychological disorders such as anxiety or depression it is very important in patients with pelvic pain.
Introduction
Chronic pain is a serious public health concern that is defined by its therapeutic challenge. Pain is devastating, estimated to be one of the leading global causes of diminished patient quality of life [1]. It is well known that multiple pain mechanisms and psychosocial patient characteristics are often involved in the different patient presentations found within any one disease. This individuality is important because it may affect treatment efficacy, thus leading to the suggestion of precision or tailored medicine. As such, there has been a push in the field of chronic pain for a multidimensional, evidence-based taxonomy system that acknowledges the myriad “biopsychosocial” mechanisms that commonly underlie these conditions. The Analgesic, Anesthetic, and Addiction Clinical Trial Translations Innovations Opportunities and Networks (ACTTION) partnered with the US Food and Drug Administration (FDA) and the American Pain Society (APS) to develop a biopsychosocial taxonomy system for chronic pain conditions called ACTTION-APS Pain Taxonomy (AAPT; [2]). The AAPT system is designed to provide a multidimensional framework for healthcare providers to conceptualize chronic pain conditions using the following dimensions: “1) core diagnostic criteria; 2) common features; 3) common medical comorbidities; 4) neurobiological, psychosocial, and functional consequences; and 5) putative neurobiological and psychosocial mechanisms, risk factors, and protective factors” (p. 242).
Chronic pelvic pain is difficult to diagnose and treat because the discomfort can be indicated by more than one health concern. Examples of pelvic pain syndromes are interstitial cystitis/bladder pain syndrome (IC/BPS), inflammatory bowel disease (IBD, consisting of Crohn’s disease and ulcerative colitis), pelvic inflammatory diseases (often associated with sexually transmitted infections), endometriosis, pelvic congestion syndrome, bacterial vaginosis, pelvic floor tension myalgia, vulvodynia (chronic vulvar pain), and ovarian cysts. Given the wide range of etiological and comorbid psychosocial factors, chronic pelvic pain is described as complex [3]. Indeed, research on pain and psychological characteristics of women waiting for gynecological surgery has shown that 18% reported high anxiety, 37% reported depressive symptoms, 47% had two or more symptoms of somatization, and 40% reported elevated pain catastrophizing [4]. Further, just over 30% reported moderate to severe pain intensity and interference due to pain. Of those in pain, depressive symptoms, somatization, and catastrophizing were associated with elevated pain intensity and interference. As such, a comprehensive multidisciplinary and biopsychosocial approach to assess and manage chronic pelvic pain is widely supported [e.g., 3, 5, 6].
Our collaborative pelvic pain clinical research group has taken a biopsychosocial, multidimensional approach, similar to the AAPT system, and applied it to urological pelvic pain conditions. The UPOINT system considers six domains when classifying a patient’s symptoms: urinary, psychosocial, organ specific, infection, neurological/systemic, and tenderness (i.e., muscle) [7, 8]. While the UPOINT system is focused on urological pelvic pain, the AAPT system considers very similar principles in the assessment and management of pain conditions in that they consider factors beyond biology, such as psychosocial variables. While these variables are an often overlooked aspect of the biopsychosocial model, psychological factors are gaining more attention in the literature for their key role in effective pain management [9, 10]. As one recent example, our group has suggested that an optimal management of IC/BPS requires more personalized data than that obtained with symptom questionnaires and standard urological assessment [11]. We used a qualitative approach to develop a best evidence series of questions to explore the IC/BPS patient’s total “clinical picture,” suggesting that examining what is important to the patient has value.
Applying the biopsychosocial approach provided by the AAPT and UPOINT frameworks and our clinical experiences, this chapter briefly reviews psychosocial risk factors and functional consequences of chronic pelvic pain and suggests interview questions and tools (i.e., brief and valid questionnaires) for their assessment. These assessment recommendations for psychosocial factors are analogous to previous efforts [12, 13], but here the focus is on female chronic pelvic pain.
Overview of Pertinent Risk Factors and Functional Consequences
We know that women suffering from IC/BPS may perceive real improvement in their life situation with a multidisciplinary team applying an individually developed phenotype specific treatment plan, yet change in self-reported pain, urinary frequency, and urgency is often not significant [14]. These findings highlight the improvements that can be made when psychosocial factors are indirectly addressed through a caring environment. There are several important areas of research that support specific assessments. In the text that follows we outline specific disease-associated variables that we believe are important in capturing the patient experience.
Pain.
Pain, and chronic pain in particular, is a complex phenomenon comprising physical, social, and psychological factors. Thus, a thorough patient assessment of pain must also include psychological evaluation. Women with chronic pelvic pain are at risk for extended periods of pain and psychological symptoms, with some samples of women with chronic pelvic pain experiencing their pain symptoms for more than 2 years [5]. Research has also shown that pain and urinary symptoms in women with IC/BPS are important factors in promoting maladaptive coping responses and diminished quality of life [15]. In another study, 73% of IC/BPS patients sampled reported numerous systemic pains outside the typical body areas associated with the bladder/pelvic region, with increased numbers of body pain sites being associated with greater pain severity and depression [16]. Thus, documenting and understanding comorbid pain is recommended.
Disability.
Experiencing chronic pain results in disability in many of its sufferers [13]. Women with chronic pelvic pain experience limitations in a variety of daily living activities [17]. As well, physical disability can be worsened by a patient’s negative perception of her illness, attempts to cope using illness-focused coping, and poorer emotional regulation in IC/BPS [15]. Given these findings, assessing disability holistically is important for patients with chronic pelvic pain in order to elucidate how their pain affects their functioning in a variety of contexts.
Quality of Life.
Poor health-related quality of life is a common functional limitation for patients experiencing chronic pain [13]. Chronic pelvic pain sufferers report significant negative effects of the condition on their quality of life [5, 17]. This psychological variable is particularly important to assess, as it is likely a major factor underlying treatment-seeking given that it plays a major role in patients’ well-being.
Catastrophizing.
Pain catastrophizing (i.e., negative thoughts and emotions associated with actual or anticipated pain; [18]) plays a significant role in the development [12] and maintenance [13] of many pain conditions. Shoskes and colleagues [8] identified catastrophizing as an important maladaptive coping strategy to consider among patients with pelvic pain conditions. In a sample of women with pelvic pain, catastrophizing was significantly correlated with mental health and functioning, suggesting that it plays a role in many important disease-related outcomes [5]. In a recent unpublished study, catastrophizing and difficulties in emotion regulation were found to mediate the relationship between pain and depression/pain-related disability in women suffering from IC/BPS [19]. Further, catastrophizing and depression have both been found to be predictors of patient distress in IC/BPS, with more than one in five patients reported having had suicidal thoughts [20]. This study was important because it suggested that psychosocial risk factors were worrisome over and above IC/BPS-specific symptoms and patient pain experience in predicting suicidal thinking in IC/BPS.
Depression.
While there is evidence that depressive symptomology is a consequence of experiencing chronic pain, it has also been shown to be a critical risk factor for the development of chronic pain conditions [12, 13]. Women with chronic pelvic pain experience significant levels of depression, with one study reporting more than 50% of their sample scoring above a clinical cutoff point [5]. Indeed, in a review of the research, depression was identified as an important risk factor among women experiencing recurrent pelvic pain [21]. Another study found that depression was the strongest multivariable predictor of suicidal ideation over and above IC/BPS pain and symptoms [20].
Anxiety.
Similar to depression, anxiety can be conceptualized as both a risk factor for, and consequence of chronic pain [12,13], with a similar pattern found for chronic pelvic pain. Anxiety symptoms have been identified as a key risk factor for the development of noncyclical pelvic pain [21]. Further, the majority of a sample of women with chronic pelvic pain experienced anxiety symptoms that fell in the moderate to severe range [5].
Coping Style.
One’s pain coping style can either serve to be adaptive or maladaptive, playing an important predictive role for a patient’s prognosis [12, 13]. A sample of women with chronic pelvic pain reported low levels of pain self-efficacy and low confidence in their coping skills in areas such as their ability to manage without medication [5]. IC/BPS research on coping has shown that disability is mediated by the effect of depressed mood and catastrophizing, which are precursors of illness-focused coping [22]. Women’s negative thoughts about their illness in IC/BPS have been found to be associated with behavioral illness-focused coping (e.g., pain guarding, pain induced resting, asking for assistance), while thoughts that one is in control of their illness and treatment (e.g., illness self-efficacy) has been found to be associated with using wellness-focused coping for pain (e.g., exercising/stretching, positive coping self-talk, and relaxation) [15]. Based on these findings, coping style is crucial to assess, as it could play a major role in treatment success; thus, having an understanding of how patients cope with their pain could help guide effective symptom management plans.
Social Support.
In general, individuals with chronic pain who report greater levels of perceived social support tend to fare better [12]. However, individuals who receive solicitous support (i.e., someone takes over an activity and does it for them) actually tend to fare worse than those who do not receive this type of pain-behavior reinforcement [23]. In IC/BPS, women who receive “distraction” from their spouses when in pain report that distraction actually acts to “buffer” the deleterious effects of pain on their mental quality of life [24]. In an IBD sample, greater negative spousal responses and less perceived spousal support predicted poorer IBD-quality of life [25]. In this study, helplessness catastrophizing was a mediator, acting as a mechanism between both negative spousal responses and perceived spousal support with IBD-quality of life in two separate models. Thus, social interaction variables were associated with IBD-quality of life, but patients’ experience of helplessness reduced their ability to benefit from social support [25]. Disentangling the type and amount of social support a patient is receiving can have important clinical implications for their pain management.
Sexual Functioning.
Another functional consequence of chronic pelvic pain is sexual functioning difficulties [5]. Given the high prevalence and associated distress that comes along with sexual difficulties, it is a critical area of assessment for patients with chronic pelvic pain. In one sample, a majority of these women experienced pain during intercourse ranging from at least half of the time to almost always [5]. Of note, nearly half of their sample did not even attempt intercourse. Further, our group has found that sexual functioning, employment, and pain predicted mental and physical quality of life. In particular, sexual functioning was a primary predictor of mental quality of life in women with long-standing IC/BPS, suggesting that sexual functioning may be a salient therapeutic target in the multifaceted treatment of patients with IC/BPS [26]. These findings highlight the significant impact chronic pelvic pain has on women’s sexuality.
Taken together, the reviewed research highlights many pertinent psychosocial risk and maintenance factors that are important to consider in the assessment of patients with chronic pelvic pain. The purpose was to highlight the significant impact that these factors have on how patients feel and function, as well as how central these factors can be in the case conceptualization of a patient’s disease and prognosis. Proper assessment of these factors can contribute to better clinical outcomes for patients who suffer from chronic pelvic pain.
Methods to Assess Psychosocial Variables
The following sections outline two methods to assess the psychosocial risk factors and functional consequences for chronic pelvic pain. First, a series of interview questions that “tap into” the content areas reviewed earlier are provided. These questions can be used in a semistructured interview format to provide a base patient interview. Second, a listing and description of several brief, valid, and reliable questionnaires representing the factors described earlier are provided.
As shown in Table 4.1, there are several types of questions that could be asked in a patient interview to query each of the psychosocial domains. The questionnaires are meant to supplement a patient interview, in order to provide detailed, quantitative information on areas identified in the interview as being be of particular concern. Following a theme of discovery in the patient engagement, the assessment tools provide a quick and empirically validated way to gather further information about a patient’s psychosocial functioning and easily gather information that can be used to track patient progress on several topics. If used in concert, these methods will provide clinicians insight into the psychosocial domains as suggested by the AAPT and UPOINT systems. Finally, this assessment method also allows for an effective way to communicate to other healthcare providers, such as psychologists or other mental health professionals, about what types of psychosocial issues for which a patient may require remediation. This information is invaluable in guiding multidisciplinary treatment plans for patients and is a strategy considered the gold standard for those suffering from chronic pelvic pain.
Psychosocial Factor | General Interview Questions | Measure | Description | No. of Items |
---|---|---|---|---|
Pain |
| McGill Pain Questionnaire-Short Form (SF-MPQ; [28]) | Assesses emotional and sensory aspects of respondent’s pain experience | 15 |
Disability | Do you find that your pain makes it difficult to do things around the house, work, or other areas of your life? | Pain Disability Index (PDI; [29]) | Measures pain-related disability in seven broad areas of functioning | 7 |
| Please rate your health as “excellent, good, fair, or poor” |
|
| |
Catastrophizing | When you feel pain, do you have the thought that it is terrible and feel that it is never going to get any better? | Pain Catastrophizing Scale (PCS; [32]) | Assesses thoughts and feelings that may be associated with pain | 13 |
Depressive symptoms | Over the past couple of weeks, how much have you been bothered by feeling sad, down, or uninterested in life? [41] |
|
| |
Anxiety symptoms | Over the past couple of weeks, how much have you been bothered by feeling anxious or nervous? [41] |
|
| |
| Do you find that you cope with your pain by stopping and resting or do you try to get active? | Chronic Pain Coping Inventory (CPCI; [37]) | Assesses illness- and wellness-focused coping strategies | Two versions – 8 or 16 items |
| Is there someone you can talk to about things that are important to you – someone you can count on for understanding or support? If yes, how many people? |
|
| |
| Do you have any sexual problems or concerns associated with your pain or otherwise? | Female Sexual Function Index (FSFI; [40]) | Assesses different facets of female sexual functioning | 19 |