- Email: [email protected]
A collaborative approach to managing interstitial cystitis
ELSEVIER
A COLLABORATIVE APPROACH TO MANAGING INTERSTITIAL CYSTITIS DEBRA SLADE, VICKI
RATNER,
AND
REBECCA CHALKER
ABSTRACT Objectives. To establish that conventional protocols often do not provide an adequate framework for managing interstitial cystitis, and to describe the special role of the urologic caregiver in developing a collaborative relationship with interstitial cystitis (IC] patients that can allay fears and provide hope that this devastating disease can be managed effectively. Methods. Epidemiologic studies and a decade of experience of IC patients and their physicians are utilized in developing a rationale for a collaborative relationship between urologic caregivers and IC patients. Results. The symptoms of interstitial cystitis-pain, urgency, and urinary frequency-can have a profoundly disruptive effect on patients’ lives and present unique challenges to physicians as urologic caregivers. The impact of IC on patients’ lives needs to be accounted for empathetically, and appropriate referrals for depression, sexuality, or relationship problems should be made. Pain should be managed aggressively, and patients who have had delayed diagnosis or who have not responded to the traditional treatments should be educated about the array of medical, complementary/alternative, and self-help modalities available. Conclusions. A successful treatment paradigm requires that physicians and patients be knowledgeable about the array of medical and complementary/alternative therapies and that these be applied in a systematic but creative way. Through empathic support, information, and a flexible treatment protocol, patients will learn to trust the medical process and take an active part in the management of IC. UROLOGY 49ISuppl 5A): 1 O13, 1997. 0 1997 by Elsevier Science Inc. All rights reserved.
I
nterstitial cystitis (IC) is a chronic, painful inflammatory disease of the bladder wall. Despite a decade of intensive research, its cause or causes remain elusive, and although multiple treatment options are now available, they are palliative at best. The symptoms of IC-pain, urgency, and urinary frequency-can have profoundly disruptive effects on patients’ lives and present unique challenges to physicians and support staff. Unfortunately, there is no consistently effective treatment for IC, and conventional protocols often do not provide an adequate framework for managing this difficult disease. For example, a patient who has bladder pain and urinary frequency may also suffer from sleep deprivation or depression and may have legitimate anxieties about family matters, parenting, or sexuality. The successful treatment paradigm requires that doctors and patients stay current on medical and complementary/alterFrom the Intersitial Cystitis Association, New York, New York Reprint requests and further information and support: Debra Slade, MA., B.A. (Oxon), lntersitial Cystitis Association, PO Box 1553, Madison Square Station, New York, New York 10159
10
COPYRIGHT ALL RIGHTS
1997 BY ELSEVIER RESERVED
SCIENCE
INC.
native therapies, as well as on self-help strategies, and that they be applied in a systematic but creative way. Even though there is no cure, through information and empathetic support, IC can be managed effectively (AJ Wein, personal communication, November 18, 1996). WHAT IT FEELS INTERSTITIAL
LIKE TO HAVE CYSTITIS
IC patients have described the pain associated with their disease as feeling “like a hot poker is being held against the bladder wall,” like “acid on an open wound,” or like “razor blades in the bladder” (letters to the Interstitial Cystitis Association (ICA) from IC patients). These graphic descriptions offer some insight into the unremitting pain that patients with severe IC endure or experience during symptom flares. Christopher Payne, a urologist at Stanford University Medical School, who volunteered to undergo an experimental bladder instillation that replicated IC pain, observed: “The pain was so intense that I was unable to keep the solution in my bladder for more than five minutes. I do not know how IC patients manage to endure 0090-4295/97/$17.00 PI1 soo90-4295(97>00170-2
that level of pain for years on end” (C Payne, personal communication reported in ICA Update, 2: 3, 1996). IC pain can be unremitting and should be treated as aggressively as the acute pain of injuries, burns, cancers, or other serious conditions. Urinary frequency of 10 to 50 times-sometimes even more-in 24 hours is another hallmark symptom of IC. Many patients have the urgent need to urinate every 5 to 15 minutes and may wake to urinate numerous times during the night. Some report such severe nocturia that they sleep on the bathroom floor to be near the toilet. Typically, urine output is meager-2 to 3 ounces at best-with a feeling of residual fullness or incomplete emptying. Many patients are unable to travel or to leave their homes to do simple errands. Incontinence aids may be useful in allowing some mobility, but for those who experience severe frequency, it is difficult to engage in normal activities. Once pain is under control, frequency may or may not decrease. The bladder-holding protocol may be useful in this regard.’ It can be done by patients independently or with the support of a urological nurse or therapist. IC is known to have a profoundly negative impact on the quality of life of those who have the disease. Two important studies, Held, et al.’ in 1990 and Kozio13 in 1994, have added enormously to our understanding of the epidemiology and natural history of IC. The median age of onset is 40 years, with 25% of patients developing IC before the age of 30.* Of those with IC, 50% have pain while riding in a ca?; 63% are unable to work full time3; between one-third and one-half have received no help from any treatment.3 It is not surprising that people with IC have suicidal thoughts 3 to 4 times as often as the general population. Suicides do occur every year. The Held study found that the quality of life of IC patients is worse than that of people on kidney dialysis, whose suffering has been well documented.* Although the way IC manifests itself may create certain unique problems, many of the coping strategies that help patients with other chronic illnesses-such as chronic fatigue syndrome, fibromyalgia, and vulvodynia -may be applied to the management of IC as well. Nonmalignant pain is as serious and debilitating as pain from malignant diseases. IC patients deserve the same type of aggressive pain management as is provided to cancer patients. This includes the consideration of narcotic therapy when consevative approches fail. THE PSYCHOSOCIAL
ASPECTS
OF IC
Learning that one has a chronic illness and accepting the realities that this implies is not an easy challenge for most people. With IC there is often UROLOGY
49 (Supplement 5A), May 1997
an initial period of relief after discovering that the condition has a name and that it is not in one’s head. Following this, however, there is often a period of depression during which the patient must accept the fact that certain aspects of his or her life will now change and that certain activities will not be possible, at least not in the immediate future. Supportive therapy can be useful in helping patients make these difficult adjustments. In addition, encouraging them to join an Interstitial Cystitis Association (ICA) support grow can help end the fears and isolation that often accompany IC. All too often IC patients hear physicians or family members say or infer that IC symptoms are “all in their heads.” Yet no psychological cause for IC has ever been demonstrated. Indeed, there is no evidence that psychotherapy has ever improved IC symptoms. Nevertheless, there may be periods in which the disease will take a psychological toll on the patient. During a bad period or after a new treatment proves ineffective, there are often psychological effects that may make coping with the physical side of the disease even more difficult. If a patient manifests the classic symptoms of depression, such as weight loss or gain, insomnia, the feeling that nothing is worthwhile, or articulates thoughts of suicide, it is essential that he or she be referred without delay to a qualified mental health professional. Referral to an IC support group and information on self-help literature are also useful. The negative impact of IC on the family of a patient can be significant. In addition to increased responsibilities placed on family members because of the limitations of the illness, there can be anxieties about a spouse or parent who has IC and feelings of frustration or helplessness at seeing a loved one in pain. IC patients may feel guilty about the fact that his or her former tasks as parent and spouse have had to be adapted or curtailed. Family vacations become more complicated, and the IC patient’s comfort is a constant consideration. Many family members are also embarrassed by the nature of the disease and its symptoms, and many may feel uncomfortable talking about it with friends or relatives outside of the immediate family. IC may also take its toll on the sexual side of a relationship. Intercourse for most patients is exceedingly painful, and many prefer to avoid it altogether.4 This often results in complicated problems between partners and has led to divorce in numerous cases. Partners may feel frustrated at having to curtail their usual sexual practices and, at the same time, may feel guilty about having sex because of the possibility of causing their partners more pain.5 The issue of pregnancy is likewise difficult because it involves scheduling and having 11
intercourse. Getting pregnant may be a painful experience. There may also be concerns about the added burdens of parenthood on the IC patient after the birth of a childe6 These and other complicated problems demand much understanding on the part of family members and spouses. Fortunately, resources specifically designed for IC patients and for family members are now available. Urologic caregivers should encourage family members to become involved in the treatment of an IC patient. This will demonstrate support for the patient and help family members feel more comfortable with the disease. Several workshops on how IC can affect family dynamics’ and sexuality’ have been done at ICA national meetings. Transcripts of these workshops are available from the ICA. IC support groups welcome the participation of spouses and other family members. There are also many family therapists who specialize in dealing with the impact of chronic illness on marriage and relationships who may also provide counseling on sexual problems. DIFFERENT
TYPES OF IC PATIENTS
PATIENTS WHO HAVE DELAYED DIAGNOSIS
Although IC is still considered an “orphan disease,” it is far from rare. With approximately 100,000 of the estimated 450,000 cases diagnosed in the United States,’ IC is far more common than cystic fibrosis with 30,000 cases, or hemophilia with 20,000. For too many people, the road to the diagnosis of IC may be lengthy and filled with frustration. The available statistics on IC indicate that it takes the average IC patient from 2 to 4.5 years to obtain a correct diagnosis and that many have seen from 2 to 5 doctors’ and sometimes 10 or more. They may see internists or family physicians, gynecologists, neurologists, and psychiatrists, as well as urologists. Many patients have lived with this disease for 10,20, or even 30 years before getting diagnosed. Because there is no disease marker, IC remains a diagnosis of exclusion. The reason for the delay in diagnosis lies, in part, in the very nature of the disease. Because IC mimics the symptoms of other conditions, such as bacterial cystitis, or the bladder component of such syndromes as fibromyalgia, vulvodynia, or lupus erythematosus, depending on the specialist consulted, these diagnoses are often pursued before IC is considered. In far too many cases, the primary reason for the failure to diagnose interstitial cystitis is the failure to consider it as a possibility in the first place (PM Hanno and AJ Wein, personal communication, November 18, 1996). Difficulties in obtaining a timely diagnosis often results in extremely frustrated patients who are angry at the medical community and, hence, suspi12
cious of proffered treatments. Many patients have also suffered from a plethora of inappropriate treatments, including repeated antibiotics, urethral dilations, unnecessary surgeries, and the side effects of useless medications. Unfortunately, this frustration is often focused on the current urologist and support staff, who are precisely the ones who are finally addressing these patients’ needs appropriately. This situation can be ameliorated in part by acknowledging a patient’s history and empathizing with his or her frustration and distress. PATIENTS WHO SUFFERANXZETZESAFTER DIAGNOSIS
In the past, an IC patient’s road to diagnosis was all too often a “trail of tears.” Today, however, many patients are being diagnosed much more quickly. Yet, because IC is considered chronic and incurable, a newly diagnosed patient may react to the news with extreme anxiety. Patients may have access to the medical literature, which discusses only the most severe cases, giving a skewed and entirely unrealistic picture of the disease and its prognosis. Patients need to be reassured that IC affects everyone differently and that most patients will find a treatment or combination of treatments that is effective for them. Most therapies don’t work overnight, yet some patients have a tendency to switch doctors frequently in search of pain relief. It may take months of treatment for pain to abate. In the interim, patients should be provided with effective pain medication. Correct information about the range of treatment options and the potential for success with various therapies can help patients become more comfortable in accepting their condition and will encourage them to stick with a rational treatment plan. THE EDUCATED PATZENT
Recently, as a result of the surge in IC research and a significant increase in both the medical and self-help literature, a new category of IC patient has emerged-the patient who is well informed about the disease and who wishes to be an active participant in managing his or her care.’ These patients may have read every available medical article on IC and may even be informed about new research or the use of complementary/alternative therapies that many physicians are not yet aware of. Although urologists’ knowledge about IC is changing, there are still some practitioners who are uncomfortable with this type of patient and continue to operate on the assumption that their own experience with the disease, rather than what new literature recommends, is what should dictate the treatment protocol. This type of attitude frequently engenders friction between patient and caregiver, and usually does not result in a positive UROLOGY
49 (Supplement 5A), May 1997
doctor-patient relationship. Experimentation with self-care coping techniques should be enIn this regard, Marilou Foy, Senior couraged.l’,‘l Research Coordinator for the National IC Data Base, observes that “what seems utterly ridiculous often is the thing that gives the patient some relief.“12 DEVELOPING
A TREATMENT
PLAN
Patients can be reassured by establishing a specific plan for the treatment and management of IC. To be given the diagnosis of a serious, chronic disease and then to be told that there are few treatments available, which may not be effective, can be devastating to a patient in debilitating pain. Due to the variety of treatments now available, bladders that would have been classified as end-stage 5 years ago are now considered salvageable. Today, surgery is considered appropriate for less than 5% of patients who have failed all conservative treatment regimens, including aggressive pain management techniques. At the outset, the doctor should acknowledge that there is no cure for IC, but should reassure patients that the disease is for the most part manageable. Patients should be made aware of the entire array of medical treatments, complementary therapies, and self-help techniques, and doctor and patients should collaborate to establish a longterm treatment plan. From a patient’s perspective, the knowledge that there are many treatments available and that these will be systematically tried until one proves successful is particularly reassuring. Through creative communication and a flexible treatment protocol, patients will learn to trust the medical process and take an active part in the management of IC. Most importantly, this approach will also allow the patient to feel hopeful about their future -a critical psychological component in coping with and surviving any serious illness. THE
SPECIAL ROLE OF UROLOGIC CAREGIVERS
In treating and managing interstitial cystitis effectively, the role of urologic caregivers is critical. Due to the demands of a busy practice, it is often difficult for urologists to spend extra time with IC patients explaining the intricacies of the disorder and multifaceted aspects of its management. Consequently, the role of urologic nurses and other members of the office staff is extremely important. Nurses who are current on IC research can take the pressure of extensive counseling off of busy
UROLOGY
49 (Supplement
SA),
May
1997
physicians and, at the same time, provide the patient with individual attention and essential information on medical and complementary therapies, as well as on established self-care techniques. It is enormously comforting for patients to be able to talk with someone who is empathetic and knowledgeable about IC and who can explain in an unhurried and attentive manner various aspects of the disease and its treatment. The entire urologic team, including receptionists and appointment clerks, should be aware of the propensity of IC symptoms to flare acutely and should be able to provide an appropriate response. An IC patient experiencing an acute flare of symptoms should not have to wait 1 or 2 days to get a prescription or to speak with the doctor or nurse. Contingencies for such unpredictable occurrences should be built into the management plan. The goal of the urologic caregiver should be to help patients frustrated by delayed diagnosis and those who have fears and anxieties about their prognosis to become educated IC patients. These patients should be encouraged to play an active role in the management of their disease. It is essential for urologists and support staff to stay current on the latest medical and complementary therapies and to apply them creatively and energetically in efforts to control symptoms. This should result in a collaborative partnership that engenders hope in the patient and will provide a framework for the effective treatment of IC. REFERENCES 1. Parsons CL, and Koprowski PF: Interstitial cystitis: successful management by increasing urinary voiding intervals. Urology, 37: 207-212, 1991. 2. Held PJ, Hanno PM, Wein AJ, Pauly MV, and Cahn MA: Epidemiology of interstitial cystitis, in Hanno PM, Staskin DR, Krane RJ, and Wein AJ (Eds.). Interstitial Cystitis. New York, Springer-Verlag, 1990, pp 29-48. 3. Koziol JA: Epidemiology of interstitial cystitis. Ural Clin North Am 21: 7-20, 1994. 4. Chalker CR, and Whitmore KE: Overcoming Bladder Disorders. New York, HarperCollins, 1991, pp 245-246. 5. ICA. IC and Sex (brochure), 1993. 6. ICA. IC and Pregnancy (brochure), 1994. 7. Brennan T: Spouses of IC patients: workshop on sexuality, depression, stress, and the added domestic and financial burdens of IC patients and their families. Transcript of Eighth National ICA Meeting, San Diego, October 1995. 8. McCormick N: Sexuality despite IC. Transcript of Eighth National ICA Meeting, San Diego, October 1995 9. Koprowski PF, and Schuster M: Doctor/patient relationship workshop. Eighth National ICA Meeting, San Diego, October 1995. 10. ICA. IC and Diet (brochure), 1993. 11. ICA. Self-Helpfor IC (brochure), 1992. 12. Foy M: A new start: interstitial cystitis (IC) coping tips treatment. Baker Norton Pharmaceuticals, and ElmironR 1996.
13
A COLLABORATIVE APPROACH TO MANAGING INTERSTITIAL CYSTITIS DEBRA SLADE, VICKI
RATNER,
AND
REBECCA CHALKER
ABSTRACT Objectives. To establish that conventional protocols often do not provide an adequate framework for managing interstitial cystitis, and to describe the special role of the urologic caregiver in developing a collaborative relationship with interstitial cystitis (IC] patients that can allay fears and provide hope that this devastating disease can be managed effectively. Methods. Epidemiologic studies and a decade of experience of IC patients and their physicians are utilized in developing a rationale for a collaborative relationship between urologic caregivers and IC patients. Results. The symptoms of interstitial cystitis-pain, urgency, and urinary frequency-can have a profoundly disruptive effect on patients’ lives and present unique challenges to physicians as urologic caregivers. The impact of IC on patients’ lives needs to be accounted for empathetically, and appropriate referrals for depression, sexuality, or relationship problems should be made. Pain should be managed aggressively, and patients who have had delayed diagnosis or who have not responded to the traditional treatments should be educated about the array of medical, complementary/alternative, and self-help modalities available. Conclusions. A successful treatment paradigm requires that physicians and patients be knowledgeable about the array of medical and complementary/alternative therapies and that these be applied in a systematic but creative way. Through empathic support, information, and a flexible treatment protocol, patients will learn to trust the medical process and take an active part in the management of IC. UROLOGY 49ISuppl 5A): 1 O13, 1997. 0 1997 by Elsevier Science Inc. All rights reserved.
I
nterstitial cystitis (IC) is a chronic, painful inflammatory disease of the bladder wall. Despite a decade of intensive research, its cause or causes remain elusive, and although multiple treatment options are now available, they are palliative at best. The symptoms of IC-pain, urgency, and urinary frequency-can have profoundly disruptive effects on patients’ lives and present unique challenges to physicians and support staff. Unfortunately, there is no consistently effective treatment for IC, and conventional protocols often do not provide an adequate framework for managing this difficult disease. For example, a patient who has bladder pain and urinary frequency may also suffer from sleep deprivation or depression and may have legitimate anxieties about family matters, parenting, or sexuality. The successful treatment paradigm requires that doctors and patients stay current on medical and complementary/alterFrom the Intersitial Cystitis Association, New York, New York Reprint requests and further information and support: Debra Slade, MA., B.A. (Oxon), lntersitial Cystitis Association, PO Box 1553, Madison Square Station, New York, New York 10159
10
COPYRIGHT ALL RIGHTS
1997 BY ELSEVIER RESERVED
SCIENCE
INC.
native therapies, as well as on self-help strategies, and that they be applied in a systematic but creative way. Even though there is no cure, through information and empathetic support, IC can be managed effectively (AJ Wein, personal communication, November 18, 1996). WHAT IT FEELS INTERSTITIAL
LIKE TO HAVE CYSTITIS
IC patients have described the pain associated with their disease as feeling “like a hot poker is being held against the bladder wall,” like “acid on an open wound,” or like “razor blades in the bladder” (letters to the Interstitial Cystitis Association (ICA) from IC patients). These graphic descriptions offer some insight into the unremitting pain that patients with severe IC endure or experience during symptom flares. Christopher Payne, a urologist at Stanford University Medical School, who volunteered to undergo an experimental bladder instillation that replicated IC pain, observed: “The pain was so intense that I was unable to keep the solution in my bladder for more than five minutes. I do not know how IC patients manage to endure 0090-4295/97/$17.00 PI1 soo90-4295(97>00170-2
that level of pain for years on end” (C Payne, personal communication reported in ICA Update, 2: 3, 1996). IC pain can be unremitting and should be treated as aggressively as the acute pain of injuries, burns, cancers, or other serious conditions. Urinary frequency of 10 to 50 times-sometimes even more-in 24 hours is another hallmark symptom of IC. Many patients have the urgent need to urinate every 5 to 15 minutes and may wake to urinate numerous times during the night. Some report such severe nocturia that they sleep on the bathroom floor to be near the toilet. Typically, urine output is meager-2 to 3 ounces at best-with a feeling of residual fullness or incomplete emptying. Many patients are unable to travel or to leave their homes to do simple errands. Incontinence aids may be useful in allowing some mobility, but for those who experience severe frequency, it is difficult to engage in normal activities. Once pain is under control, frequency may or may not decrease. The bladder-holding protocol may be useful in this regard.’ It can be done by patients independently or with the support of a urological nurse or therapist. IC is known to have a profoundly negative impact on the quality of life of those who have the disease. Two important studies, Held, et al.’ in 1990 and Kozio13 in 1994, have added enormously to our understanding of the epidemiology and natural history of IC. The median age of onset is 40 years, with 25% of patients developing IC before the age of 30.* Of those with IC, 50% have pain while riding in a ca?; 63% are unable to work full time3; between one-third and one-half have received no help from any treatment.3 It is not surprising that people with IC have suicidal thoughts 3 to 4 times as often as the general population. Suicides do occur every year. The Held study found that the quality of life of IC patients is worse than that of people on kidney dialysis, whose suffering has been well documented.* Although the way IC manifests itself may create certain unique problems, many of the coping strategies that help patients with other chronic illnesses-such as chronic fatigue syndrome, fibromyalgia, and vulvodynia -may be applied to the management of IC as well. Nonmalignant pain is as serious and debilitating as pain from malignant diseases. IC patients deserve the same type of aggressive pain management as is provided to cancer patients. This includes the consideration of narcotic therapy when consevative approches fail. THE PSYCHOSOCIAL
ASPECTS
OF IC
Learning that one has a chronic illness and accepting the realities that this implies is not an easy challenge for most people. With IC there is often UROLOGY
49 (Supplement 5A), May 1997
an initial period of relief after discovering that the condition has a name and that it is not in one’s head. Following this, however, there is often a period of depression during which the patient must accept the fact that certain aspects of his or her life will now change and that certain activities will not be possible, at least not in the immediate future. Supportive therapy can be useful in helping patients make these difficult adjustments. In addition, encouraging them to join an Interstitial Cystitis Association (ICA) support grow can help end the fears and isolation that often accompany IC. All too often IC patients hear physicians or family members say or infer that IC symptoms are “all in their heads.” Yet no psychological cause for IC has ever been demonstrated. Indeed, there is no evidence that psychotherapy has ever improved IC symptoms. Nevertheless, there may be periods in which the disease will take a psychological toll on the patient. During a bad period or after a new treatment proves ineffective, there are often psychological effects that may make coping with the physical side of the disease even more difficult. If a patient manifests the classic symptoms of depression, such as weight loss or gain, insomnia, the feeling that nothing is worthwhile, or articulates thoughts of suicide, it is essential that he or she be referred without delay to a qualified mental health professional. Referral to an IC support group and information on self-help literature are also useful. The negative impact of IC on the family of a patient can be significant. In addition to increased responsibilities placed on family members because of the limitations of the illness, there can be anxieties about a spouse or parent who has IC and feelings of frustration or helplessness at seeing a loved one in pain. IC patients may feel guilty about the fact that his or her former tasks as parent and spouse have had to be adapted or curtailed. Family vacations become more complicated, and the IC patient’s comfort is a constant consideration. Many family members are also embarrassed by the nature of the disease and its symptoms, and many may feel uncomfortable talking about it with friends or relatives outside of the immediate family. IC may also take its toll on the sexual side of a relationship. Intercourse for most patients is exceedingly painful, and many prefer to avoid it altogether.4 This often results in complicated problems between partners and has led to divorce in numerous cases. Partners may feel frustrated at having to curtail their usual sexual practices and, at the same time, may feel guilty about having sex because of the possibility of causing their partners more pain.5 The issue of pregnancy is likewise difficult because it involves scheduling and having 11
intercourse. Getting pregnant may be a painful experience. There may also be concerns about the added burdens of parenthood on the IC patient after the birth of a childe6 These and other complicated problems demand much understanding on the part of family members and spouses. Fortunately, resources specifically designed for IC patients and for family members are now available. Urologic caregivers should encourage family members to become involved in the treatment of an IC patient. This will demonstrate support for the patient and help family members feel more comfortable with the disease. Several workshops on how IC can affect family dynamics’ and sexuality’ have been done at ICA national meetings. Transcripts of these workshops are available from the ICA. IC support groups welcome the participation of spouses and other family members. There are also many family therapists who specialize in dealing with the impact of chronic illness on marriage and relationships who may also provide counseling on sexual problems. DIFFERENT
TYPES OF IC PATIENTS
PATIENTS WHO HAVE DELAYED DIAGNOSIS
Although IC is still considered an “orphan disease,” it is far from rare. With approximately 100,000 of the estimated 450,000 cases diagnosed in the United States,’ IC is far more common than cystic fibrosis with 30,000 cases, or hemophilia with 20,000. For too many people, the road to the diagnosis of IC may be lengthy and filled with frustration. The available statistics on IC indicate that it takes the average IC patient from 2 to 4.5 years to obtain a correct diagnosis and that many have seen from 2 to 5 doctors’ and sometimes 10 or more. They may see internists or family physicians, gynecologists, neurologists, and psychiatrists, as well as urologists. Many patients have lived with this disease for 10,20, or even 30 years before getting diagnosed. Because there is no disease marker, IC remains a diagnosis of exclusion. The reason for the delay in diagnosis lies, in part, in the very nature of the disease. Because IC mimics the symptoms of other conditions, such as bacterial cystitis, or the bladder component of such syndromes as fibromyalgia, vulvodynia, or lupus erythematosus, depending on the specialist consulted, these diagnoses are often pursued before IC is considered. In far too many cases, the primary reason for the failure to diagnose interstitial cystitis is the failure to consider it as a possibility in the first place (PM Hanno and AJ Wein, personal communication, November 18, 1996). Difficulties in obtaining a timely diagnosis often results in extremely frustrated patients who are angry at the medical community and, hence, suspi12
cious of proffered treatments. Many patients have also suffered from a plethora of inappropriate treatments, including repeated antibiotics, urethral dilations, unnecessary surgeries, and the side effects of useless medications. Unfortunately, this frustration is often focused on the current urologist and support staff, who are precisely the ones who are finally addressing these patients’ needs appropriately. This situation can be ameliorated in part by acknowledging a patient’s history and empathizing with his or her frustration and distress. PATIENTS WHO SUFFERANXZETZESAFTER DIAGNOSIS
In the past, an IC patient’s road to diagnosis was all too often a “trail of tears.” Today, however, many patients are being diagnosed much more quickly. Yet, because IC is considered chronic and incurable, a newly diagnosed patient may react to the news with extreme anxiety. Patients may have access to the medical literature, which discusses only the most severe cases, giving a skewed and entirely unrealistic picture of the disease and its prognosis. Patients need to be reassured that IC affects everyone differently and that most patients will find a treatment or combination of treatments that is effective for them. Most therapies don’t work overnight, yet some patients have a tendency to switch doctors frequently in search of pain relief. It may take months of treatment for pain to abate. In the interim, patients should be provided with effective pain medication. Correct information about the range of treatment options and the potential for success with various therapies can help patients become more comfortable in accepting their condition and will encourage them to stick with a rational treatment plan. THE EDUCATED PATZENT
Recently, as a result of the surge in IC research and a significant increase in both the medical and self-help literature, a new category of IC patient has emerged-the patient who is well informed about the disease and who wishes to be an active participant in managing his or her care.’ These patients may have read every available medical article on IC and may even be informed about new research or the use of complementary/alternative therapies that many physicians are not yet aware of. Although urologists’ knowledge about IC is changing, there are still some practitioners who are uncomfortable with this type of patient and continue to operate on the assumption that their own experience with the disease, rather than what new literature recommends, is what should dictate the treatment protocol. This type of attitude frequently engenders friction between patient and caregiver, and usually does not result in a positive UROLOGY
49 (Supplement 5A), May 1997
doctor-patient relationship. Experimentation with self-care coping techniques should be enIn this regard, Marilou Foy, Senior couraged.l’,‘l Research Coordinator for the National IC Data Base, observes that “what seems utterly ridiculous often is the thing that gives the patient some relief.“12 DEVELOPING
A TREATMENT
PLAN
Patients can be reassured by establishing a specific plan for the treatment and management of IC. To be given the diagnosis of a serious, chronic disease and then to be told that there are few treatments available, which may not be effective, can be devastating to a patient in debilitating pain. Due to the variety of treatments now available, bladders that would have been classified as end-stage 5 years ago are now considered salvageable. Today, surgery is considered appropriate for less than 5% of patients who have failed all conservative treatment regimens, including aggressive pain management techniques. At the outset, the doctor should acknowledge that there is no cure for IC, but should reassure patients that the disease is for the most part manageable. Patients should be made aware of the entire array of medical treatments, complementary therapies, and self-help techniques, and doctor and patients should collaborate to establish a longterm treatment plan. From a patient’s perspective, the knowledge that there are many treatments available and that these will be systematically tried until one proves successful is particularly reassuring. Through creative communication and a flexible treatment protocol, patients will learn to trust the medical process and take an active part in the management of IC. Most importantly, this approach will also allow the patient to feel hopeful about their future -a critical psychological component in coping with and surviving any serious illness. THE
SPECIAL ROLE OF UROLOGIC CAREGIVERS
In treating and managing interstitial cystitis effectively, the role of urologic caregivers is critical. Due to the demands of a busy practice, it is often difficult for urologists to spend extra time with IC patients explaining the intricacies of the disorder and multifaceted aspects of its management. Consequently, the role of urologic nurses and other members of the office staff is extremely important. Nurses who are current on IC research can take the pressure of extensive counseling off of busy
UROLOGY
49 (Supplement
SA),
May
1997
physicians and, at the same time, provide the patient with individual attention and essential information on medical and complementary therapies, as well as on established self-care techniques. It is enormously comforting for patients to be able to talk with someone who is empathetic and knowledgeable about IC and who can explain in an unhurried and attentive manner various aspects of the disease and its treatment. The entire urologic team, including receptionists and appointment clerks, should be aware of the propensity of IC symptoms to flare acutely and should be able to provide an appropriate response. An IC patient experiencing an acute flare of symptoms should not have to wait 1 or 2 days to get a prescription or to speak with the doctor or nurse. Contingencies for such unpredictable occurrences should be built into the management plan. The goal of the urologic caregiver should be to help patients frustrated by delayed diagnosis and those who have fears and anxieties about their prognosis to become educated IC patients. These patients should be encouraged to play an active role in the management of their disease. It is essential for urologists and support staff to stay current on the latest medical and complementary therapies and to apply them creatively and energetically in efforts to control symptoms. This should result in a collaborative partnership that engenders hope in the patient and will provide a framework for the effective treatment of IC. REFERENCES 1. Parsons CL, and Koprowski PF: Interstitial cystitis: successful management by increasing urinary voiding intervals. Urology, 37: 207-212, 1991. 2. Held PJ, Hanno PM, Wein AJ, Pauly MV, and Cahn MA: Epidemiology of interstitial cystitis, in Hanno PM, Staskin DR, Krane RJ, and Wein AJ (Eds.). Interstitial Cystitis. New York, Springer-Verlag, 1990, pp 29-48. 3. Koziol JA: Epidemiology of interstitial cystitis. Ural Clin North Am 21: 7-20, 1994. 4. Chalker CR, and Whitmore KE: Overcoming Bladder Disorders. New York, HarperCollins, 1991, pp 245-246. 5. ICA. IC and Sex (brochure), 1993. 6. ICA. IC and Pregnancy (brochure), 1994. 7. Brennan T: Spouses of IC patients: workshop on sexuality, depression, stress, and the added domestic and financial burdens of IC patients and their families. Transcript of Eighth National ICA Meeting, San Diego, October 1995. 8. McCormick N: Sexuality despite IC. Transcript of Eighth National ICA Meeting, San Diego, October 1995 9. Koprowski PF, and Schuster M: Doctor/patient relationship workshop. Eighth National ICA Meeting, San Diego, October 1995. 10. ICA. IC and Diet (brochure), 1993. 11. ICA. Self-Helpfor IC (brochure), 1992. 12. Foy M: A new start: interstitial cystitis (IC) coping tips treatment. Baker Norton Pharmaceuticals, and ElmironR 1996.
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