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Painful Bladder Syndrome
Nursing Care of Women With
Interstitial Cystitis/ Painful Bladder Syndrome NANCY J. MACMULLEN • LAURA A. DULSKI PATRICIA B. MARTIN • PAUL BLOBAUM
Interstitial cystitis/painful bladder syndrome (IC/PBS) is a chronic condition estimated to affect 3.3 million women in the United States (National Institute of Diabetes and Digestive and Kidney Diseases [NIDDK], 2013). The syndrome was originally referred to simply as interstitial cystitis (IC). However, in an effort to standardize terminology and distinguish the symptoms of lower bladder pain from those specific to cystitis, the International Continence Society and the International Cystitis Association renamed it painful bladder syndrome/interstitial cystitis (PBS/IC; Theoharides, 2007). The American Urological Association and the Agency for Healthcare Research and Quality (2013) use the term interstitial cystitis/bladder pain syndrome (IC/BPS; Hanno et al., 2014). Currently, there are continuing attempts at obtaining a more specific taxonomy for lower urinary tract symptoms (Homma et al., 2009). Therefore, bladder pain syndrome (BPS), painful bladder syndrome, IC/PBS, and IC/BPS are used somewhat interchangeably in the literature. For this article we use the term IC/PBS, which is the terminology used by the National Institutes of Health (NIDDK, 2013).
Definition The NIDDK (2013, p. 1) states that “IC/PBS includes all cases of urinary pain that can’t be attributed to other causes such as infection or urinary stones.” IC/PBS is an underdiagnosed condition, without clearly defined treatment pathways, posing a challenge to nurses and other clinicians. Abstract: Interstitial cystitis/painful bladder syndrome is a chronic condition affecting approximately 3.3 million women in the United States. It is defined by the National Institute of Diabetes and Digestive and Kidney Diseases as “urinary pain that can’t be attributed to other causes such as infection or urinary stones.” Because of the intimate nature of the symptoms, women are often reluctant to seek treatment. When they do, they require a care provider with specialized nursing skills. Nursing practice based on carefully reviewed literature will result in the provision of comprehensive and compassionate nursing care for women with interstitial cystitis/painful bladder syndrome. http://dx.doi.org/10.1016/j.nwh.2016.01.006 Keywords: bladder pain | evidence-based practice | interstitial cystitis | literature review | painful bladder syndrome
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Epidemiology As noted by the NIDDK (2013), an estimated 3.3 million women, or 2.7% of those 18 years of age or older, experience symptoms of IC/PBS. Lau and Bengston (2010) report that the lack of a standardized definition for IC/ PBS inhibits data collection; therefore, estimates of the number of people with the syndrome may not be accurate. The discrepancy is illustrated in research done by Berry et al. (2011), whose results show that the prevalence rate of IC/PBS may be larger. They estimate that 3.3 to 7.9 million U.S. women 18 years or older have symptoms of IC/PBS. Lau and Bengston (2010) also state that the incidence of the disease varies globally. In Finland, the prevalence was estimated as 450 per 100,000 and, in Austria, 306 per 100,000 (Homma et al., 2009). Although men have IC/PBS, women are disproportionately affected by a ratio of 10 to 1 (Lau & Bengston, 2010).
Nancy J. MacMullen, PhD, is chairperson and director of the Department of Nursing at Governors State University in University Park, IL. Laura A. Dulski, MSN, is an assistant professor in the School of Nursing at Resurrection University in Chicago, IL. Patricia B. Martin, DNP, is president of the Tinley Park Campus at Chamberlain College of Nursing in Tinley Park, IL. Paul Blobaum, MA, MS, is a full professor and a medical librarian at Governors State University in University Park, IL. The authors report no conflicts of interest or relevant financial relationships. Address correspondence to: [email protected].
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Theories of Causation There are many theories regarding the etiology of IC/PBS. The most likely are infection, autoimmune inflammation, mast cell activation, bladder epithelial permeability, neurogenic inflammation, and antiproliferative factor (Hanno, 2002). The etiology may be multifactorial, and it is difficult to pinpoint the exact pathophysiologic mechanisms for the syndrome. Butrick, Howard, and Sand (2010) propose that there may be a deficiency of the glycosaminoglycan layer on the bladder surface. This increases the permeability of the urothelium, allowing entrance of irritating solutes to leak from the urine into the bladder tissues. Neurogenic inflammation and immune response may also be involved. The pain experienced in IC/PBS is due to the infiltrated urine from the defective bladder mucosa, which induces submucosal inflammation and results in pain (Homma et al., 2009).
Associated Conditions No definitive risk factors have been identified for IC/PBS. Some researchers associate irritable bowel syndrome, fibromyalgia, and systemic lupus erythematosus with IC/PBS (Butrick et al., 2010). Others identify smoking, depression, generalized pain
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Staff nurses and advanced practice nurses alike need the appropriate education and specific skill sets essential for working with women with IC/PBS. Besides knowledge and clinical expertise in issues in women’s health and urology, nurses are called on to be empathetic and sensitive to women with embarrassing symptoms. Two of the symptoms of IC/PBS that can be most upsetting to women are urgency and frequency. Clinicians should be mindful that women with IC/PBS may be reluctant to discuss their symptoms; in addition, the syndrome can be confused with other diseases. Women might first seek treatment for their symptoms with their women’s health care practitioner and then be referred to an urogynecologist for further care. Given the complex nature of IC/PBS, the purpose of this article is to answer the question, What are the nursing interventions for women with IC/PBS that lead to best nursing practice? Nursing practice based on carefully reviewed evidence from the literature will result in the provision of comprehensive and compassionate nursing care. Although men also experience the symptoms of IC/PBS, this article focuses on women.
THE PAIN EXPERIENCED IN IC/PBS IS DUE TO THE INFILTRATED URINE FROM THE DEFECTIVE BLADDER MUCOSA, WHICH INDUCES SUBMUCOSAL INFLAMMATION AND RESULTS IN PAIN disorders, hysterectomy, and urinary tract infections (Homma et al., 2009). Allergies, migraine, chronic fatigue syndrome, and vulvodynia are also implicated (Niknejad, 2011). The possibility of heredity as a risk factor is beginning to be explored (NIDDK, 2013).
Symptoms There are a multitude of symptoms that occur in IC/PBS, and there may be symptom overlap (Sant, Kempuraj, Marchand, & Theoharides, 2007). For example, pain, which is the primary symptom of the syndrome, may be generated from the bladder, bowel, reproductive tract, and the pelvic floor musculature, making a definitive diagnosis problematic (Butrick et al., 2010). Lau and Bengston (2010) relate that the typical woman diagnosed with IC/PBS presents with bladder, urethral, or pelvic pain. The pain may be continuous or intermittent, and the intensity can differ as the bladder fills and empties (Borch et al., 2011). Urinary urgency, frequency, nocturia, bladder hypersensitivity, bladder discomfort, and bladder pain are common symptoms (Homma et al., 2009). Usually symptoms begin with a subacute onset followed by episodes of increased severity and subsequently a plateau; these episodes are referred to as flareups (Panzera, 2007).
Differential Diagnosis Diagnosis can be complicated because of the multiplicity of possible causes. Another factor inhibiting a differential diagnosis is the absence of any confirmatory diagnostic tests for IC/ PBS. Diagnosis is based on symptoms of urgency, frequency, and/or bladder/pelvic pain (Borch et al., 2011). The Office on Women’s Health (2012) delineates specific symptoms as diagnostic of IC/PBS (see Box 1). IC/PBS is a diagnosis of exclusion. The Office on Women’s Health (2012) states that the IC/PBS diagnosis requires differentiation from a urinary tract infection, bladder cancer, endometriosis, sexually transmitted infections, and kidney stones. The symptoms of urgency and frequency often seen in IC/PBS need to be distinguished from those similarly occurring with postmenopausal urogenital aging (Šimunić et al., 2003). Therefore, a thorough history, physical examination, and laboratory studies initiate the diagnostic process (Dell, 2007).
History A history should include questions regarding frequent urinary tract infections, pelvic surgery, spinal cord trauma, and central
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nervous system or autoimmune diseases (Theoharides, 2007). Some useful tools to aid clinicians in symptom assessment are frequency volume charts and symptom scores (McDermott, 2009). Frequency volume charts are records of fluid intake and output in a 24-hour period. Symptom scoring instruments delineate specific symptoms such as pain, urgency, frequency, and nocturia for women to identify. They may help women remember symptoms they may have forgotten. The frequency volume charts along with a symptom screening instrument aid in clarifying data needed for diagnosis.
Screening Two common questionnaires that can be used in screening women for IC/PBS are the Pelvic Pain and Urgency/Frequency Symptom Scale and the O’Leary–Sant Symptom and Problem Index (Cervigni, Natale, Mako, & Nasta, 2010). Both contain items about urgency, frequency, nocturia, and the relationship of symptoms to the woman’s quality of life. The Pelvic Pain and Urgency/Frequency questionnaire has items divided into two sections. One section contains ratings for symptoms. The other section asks the respondent to rate
BOX 1
IC/PBS Diagnostic Symptoms • Pain related to the bladder area that gets worse as the bladder fills • Urinary urgency • Urinary frequency • Pain, pressure, or tenderness in the pelvic area • Pain, pressure, or tenderness in the genital area • Pain during sexual intercourse (pain during ejaculation in men) • Bladder ulcers • Bleeding from the bladder Source: Office on Women’s Health, U.S. Department of Health and Human Services (2012).
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how much bother the symptoms cause. The ratings are then scored from zero to four, with a higher total score indicating a greater number of symptoms and bother.
MANY ASPECTS OF CARE FOR WOMEN WITH IC/PBS ARE MANAGED BY NURSES The O’Leary–Sant Index is divided into a symptom index and a problem index. Each section contains four questions with a rating scale. A total score of greater than six in each section indicates IC/PBS.
Physical Examination
Treatment Strategies Levels of Therapies
Treatment strategies for IC/PBS are multimodal, and the approach is to begin with conservative measures and progress to the more aggressive therapies as needed (Hanno et al., 2014). Lau and Bengtson (2010) categorize therapies as nonpharmacologic, oral pharmacologic, intravesical, and hydrodistention.
Nonpharmacologic Therapy Dietary modification and elimination of foods and beverages that aggravate the condition usually alleviate the symptoms of IC/PBS. Foods that irritate the bladder include chocolate, artificial sweeteners, alcohol, tomatoes, spices, caffeinated and citrus drinks, high-acid foods, yeast, aged cheese, vinegar, mayonnaise, onions, smoked and barbequed foods, soy sauce,
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Initial physical examinations should be performed by clinicians with the required education and clinical experience, including advanced practice nurses, and should include a complete gynecologic work-up (Whitmore & Theoharides, 2011) and pelvic examination. Examination of the perineum and pelvic floor muscle strength and tenderness, along with bladder palpation, are essential components of the physical examination (Association of Reproductive Health Professionals, 2008; Erickson & Windisch, 2006). These techniques are done to rule out other pathology. If no definitive diagnosis results, a referral to a urogynecologist for further studies
(cystoscopy, urodynamic testing) is warranted. Cystoscopy is no longer indicated for diagnosis but is used for exclusion of other urinary tract diseases such as bladder cancer (Lau & Bengston, 2010). Laboratory studies include urinalysis and bladder biopsy. Urinalysis and urine culture and sensitivity are done to differentiate IC/PBS from a urinary tract infection. Urodynamic studies are done to determine detrusor muscle overactivity (Cervigni et al., 2010; Homma et al., 2009; Sant & Hanno, 2001). Bladder biopsy may be done to rule out intraepithelial carcinoma (Homma et al., 2009).
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and fermented and fried foods (Erickson & Windisch, 2006; Warren, 2007). Behavior modification and other behavioral therapies, such as timed voiding, controlled fluid intake, pelvic floor muscle training, and bladder training, may also improve outcomes (Homma et al., 2009). Physical therapy, management of any coexisting diseases, and emotional support also may be used in the treatment of IC/PBS. Hydrodistention, or overfilling of the bladder, and surgical management are more aggressive treatment possibilities. Treatment of IC/PBS should be tailored to each individual woman’s needs based on the symptoms and their severity (Dell, 2007).
Pharmacologic Therapy The goal of pharmacologic therapy is to use the medication(s) that provide significant pain relief while trying to avoid adverse effects (Hanno et al., 2014). There are a number of oral medications (antipyretics, neuropathic analgesics, antihistamines,
tricyclic antidepressants, and anticonvulsants) available. Firstline treatments generally start with nonopioid medications and progress to more potent analgesics as indicated (see Table 1; Hanno et al., 2014). However, sodium pentosan polysulfate is the only oral agent for IC/PBS approved by the U.S. Food and Drug Administration (FDA; French & Bhambore, 2011). For bladder instillation, dimethyl sulfoxide is the only drug approved by the FDA (Vella, Robinson, & Cardozo, 2012). More recently, botulinum toxin A has been approved by the FDA for intradetrusor use for overactive bladder (FDA, 2013).
Nursing Care Nursing care is directly related to the treatment of choice. Many aspects of care for women with IC/PBS are managed by nurses. Advanced practice nurses work with women regarding drug therapy, if needed; appropriate tests; and conservative treatment measures. Staff nurses gather data to incorporate into
TABLE 1
Optional Medications for IC/PBS Medication Amitriptyline
Class of Drug Tricyclic antidepressant
Dosage 25 mg/day titrated over several weeks to 100 mg/ day if tolerated
Route Oral
Common Adverse Effects Anticholinergic adverse effects
Cimetidine
H2 receptor agonist
300–400 mg 2 times/day
Oral
Diarrhea, constipation, headache, fatigue, nausea, gynecomastia
Hydroxyzine
Anticholinergic– 10 mg/day titrated up to antihistamine 50 mg/day over several weeks if tolerated or 25 mg/day titrated to 50 mg/day over several weeks if tolerated
Oral
Drowsiness, dry mouth
Pentosan polysulfate
Cystitis agent
100 mg 3 times/day
Oral
Hair loss, nausea, diarrhea, dizziness, upset stomach, headache, rash, bruising, abnormal liver function test results
DMSO
Organosulfur
50 ml/week of 50% DMSO for 6 weeks
Intravesical
Bladder discomfort, garlic odor on breath or skin
Botulinum toxin A
Neurotoxin
100 units, may have to repeat
Intradetrusor Muscle weakness, urinary incontinence, dysphagia, diplopia, dysphonia, blurred vision, ptosis, respiratory distress
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TABLE 2
Evidence-Based Guidelines for Painful Bladder Syndrome Focus
Citation
Article Category
Intervention
Nursing assessment
Borch et al. (2011)
Case study
Assess the intensity and duration of pain (intermittent or continuous) as bladder fills and empties.
Butrick, Howard, & Sand (2010)
Literature review
Evaluate pain as a primary symptom. Identify the pain source: bladder, bowel, reproductive tract, pelvic floor musculature.
Forrest & Mishell (2009)
Respected authorities’ History: Question regarding any previous opinion diagnosis, pain and voiding histories, duration of symptoms, dietary triggers, allergy history, and sexual dysfunction. Daily symptom diary is useful. Pelvic examination includes assessing the presence of suprapubic, anterior vaginal wall, and/or urethral or bladder base tenderness.
Homma et al. (2009)
Clinical practice guidelines
Question the presence of urinary urgency, frequency, and nocturia.
Hanno et al. (2014)
Clinical practice guidelines
Basic assessment includes a careful history, physical examination, and laboratory examination. Baseline voiding symptoms and pain levels are obtained to determine treatment effects.
Nursing interventions
Agency for Healthcare Clinical practice Research and Quality guidelines (2013)
First-line treatments include patient education about normal bladder functioning and IC/BPS. Second-line treatments are self-care practices, stress management practices, multimodal pain management approaches, oral medications, and bladder instillations.
Association of Reproductive Health Professionals (2008)
Opinion of respected authorities and/or nationally recognized expert committees/consensus panels based on scientific evidence
Diet counseling, oral medications, gentle exercise, stress reduction techniques, pain relief strategies, bladder retraining programs, controlled fluid intake, and experimenting with different positions during sexual intercourse are suggested. Refer to the appropriate practitioners for alternative therapies such as acupuncture and acupressure.
Carrico, Peters, & Diokno (2008)
Experimental study, RCT
Guided imagery is supported as a potential therapy for interstitial cystitis. Key interventions recommended include keeping a pain diary, mastering relaxation techniques, using hypnosis, and restructuring thought.
Davis, Brady, & Creagh (2014)
Systematic review of a combination of RCTs, quasiexperimental or non-experimental studies only with or without meta-analysis
Behavioral therapy such as timed voiding, bladder training, and controlled fluid intake is helpful for controlling frequency/urgency. Stress reduction is useful for decreasing pain and urgency. Avoid caffeine, spicy food, and carbonated drinks, which may play a role in decreasing frequency of symptoms.
Note. PPS = pentosan polysulfate sodium; RCT = randomized controlled trial.
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Focus
Citation
Article Category
Intervention
Nursing interventions
Flander (2013)
Based on Administration of oral medications such as experiential and pentosan polysulfate or antidepressants may be evidence/case reports helpful. Immunosuppressants and antihistamines show potential. Noninvasive options include dietary and fluid modifications, yoga and meditation for stress relief, and analgesic drugs.
Gokyildiz & Beji (2012)
Literature review
Howard (2012)
Based on Direct patients to appropriate resources for experiential and sexual counseling with practitioners who nonresearch evidence have extensive experience in working with psychosocial issues related to human sexuality.
Panzera (2007)
Based on Patient education on diet, bladder retraining; experiential and low-impact exercise; acupuncture, massage nonresearch evidence relaxation, and stress reduction; cold packs to the source of pain and sitz baths; medications.
Panzera, Reishtein, & Shewokis (2011)
Nonexperimental study
Focus on symptom relief, behavior management techniques, and patient education. Help patients make lifestyle changes, use cognitive behavioral therapy to alleviate sleep problems, screen for depression/anxiety.
Langford (2013)
Systematic review or a combination of RCTs and quasi-experimental and nonexperimental studies only with or without meta-analysis
Begin with setting realistic goals for symptom management and quality of life. Interventions are initiated with conservative treatment, behavior modification, and coping strategies. One medication (PPS) significantly improved symptoms and quality of life.
McDermott (2009)
Based on First-line therapy includes diet and fluid experiential and intake/elimination. Alternative methods are nonresearch evidence yoga, acupuncture, and hypnosis.
Teaching pain management methods. Help patient evaluate treatment results. Education on issues regarding painful sexual activity, such as adopting more comfortable positions, finding the source of pain, and exploring ways of achieving orgasm. Educational guidance on diet, such as what foods to avoid; emotional stress reduction; and other sexual issues. Connect patient with self-help or support groups. The nurse is the coordinator of care and ensures communication activities between the health care team, the patient, and the family.
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TABLE 2
Evidence-Based Guidelines for Painful Bladder Syndrome (continued) Focus
Citation
Article Category
Intervention
Nursing interventions
Baldwin & Herr (2004)
Based on experiential and nonresearch evidence
Nurse is a facilitator and resource-gatherer to model the client’s circumstances and to role-model key behaviors. Promote self-care and optimal level of functioning through a self-care plan. Pain management, psychological referral, rest, and increasing fluids are part of the plan.
Baldwin (2004)
Case report
Referral to counseling, daily exercise, and diet program.
National Institute of Diabetes and Digestive and Kidney Diseases (2013)
Opinions of Bladder training, a voiding diary, and respected authorities stretching exercises are suggested. and/or nationally recognized expert committees/consensus panels based on scientific evidence
Newsome (2003)
Literature review
Payne (2013)
Based on Begin with education, self-care, stress management, experiential and and pain management. Additional therapy may nonresearch evidence include oral medications, bladder instillation, and pelvic floor physical therapy.
Warren (2007)
Based on Work with patients to understand medications, diet experiential and modifications, and avoidance of exacerbating activities. nonresearch evidence Family members and spouses should be included.
Anderson & Zinkgraf (2013)
Descriptive survey/qualitative data
Partner with the patient to evaluate therapy options. Once the therapy is chosen, evaluate its effectiveness. Evaluation includes not only the patient response but also the risk/benefit of the therapy used.
Anuforo, Parletti, & Guffman (2012)
Nonexperimental study
No one single treatment emerged as superior over the others. However, a low-acidic and low-caffeine diet education in conjunction with other therapies may improve symptoms.
O’Hare et al.
Descriptive survey, experimental study, RCT
Therapies perceived to be helpful by patients included dietary management and pain management. Adjuncts such as physical therapy, heat and cold, meditation, relaxation, acupuncture, stress reduction, exercise, and sleep hygiene were also helpful.
Lee et al. (2014)
RCT
An e-health (Web) system to promote a healthy diet and lifestyle and a mobile phone application for questions and answers during symptom flares were found to be effective in improving the quality of life and alleviating symptoms in patients with bladder pain syndrome/interstitial cystitis.
Nursing evaluation
Symptom relief through teaching about diet and medications and providing emotional support.
Note. PPS = pentosan polysulfate sodium; RCT = randomized controlled trial.
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each component of a nursing plan of care, initiate the plan, and evaluate the outcome. Aggressive treatment strategies, such as surgery, require collaborative care with the physician or surgeon. Ideally, all nursing care should be evidence based. Toward that end, we reviewed the medical and nursing literature to identify the nursing interventions for women with IC/PBS that lead to best nursing practice.
Review of the Literature Working with a medical librarian, we performed a systematic review of the literature using CINAHL Plus and Medline/PubMed for the years 2004 through 2014. Keywords and subject headings used in the search were bladder pain syndrome, interstitial cystitis, interstitial cystitis/painful bladder syndrome, patient care, and nursing interventions. Journal articles chosen for inclusion in the literature search had to focus on material that could be used for nursing interventions for IC/PBS, and literature reviewed had to be global in scope.
open communication. Basic principles and expectations of client–clinician communication are described by Paget et al. (2011). The basic principles of client–clinician communication are mutual respect, harmonized goals, a supportive environment, appropriate decision partners, the right information, transparency, full disclosure, and continuous learning. These principles, particularly the projection of an accepting, supportive environment, set the stage for a clinician to collect client data for assessment. Questions required for accurate assessment data may be of an embarrassing nature. Therefore, this process can often be stressful for the client, but these steps are the basis for further intervention.
Collecting Subjective Data Eliciting accurate, subjective, and objective data from a woman requires skillful interviewing and physical assessment skills by nurse clinicians. Three articles and one guideline (Borch et al., 2011; Butrick, Howard, & Sand, 2010; Hanno et al., 2014; Homma et al., 2009) were reviewed. Specific questions recom-
ONE OF THE FIRST INTERVENTIONS THAT A NURSE DOES FOR OR WITH A WOMAN IS TO ESTABLISH AN ACCEPTING ENVIRONMENT TO ENCOURAGE OPEN COMMUNICATION In addition, we searched professional nursing and medical Web sites (National Kidney and Urologic Diseases Information Clearinghouse, Society of Urological Nursing, International Bladder Pain Foundation) for the latest medical, nursing, and consumer education information. We consulted national guidelines such as those from the Agency for Healthcare Research and Quality and the American Urological Association, and we searched the databases of the Cochrane Library, Health Service/Technology Assessment Texts, and Joanna Briggs Institute. The topics we reviewed included nursing care, symptom management, diagnostic testing, and treatments.
Results We reviewed 63 articles and 2 guidelines; 17 of the articles and 1 guideline contained topics appropriate for nursing interventions. Most articles that were available and selected for review as evidence were opinions of respected authorities and/ or nationally recognized expert committee/consensus panels. We also included articles that were experiential and presented nonresearch evidence (see Table 2).
Nursing Interventions Nursing interventions are what nurses do for a patient to enhance health outcomes (Berman, Snyder, & Frandsen, 2016). One of the first interventions that a nurse does for or with a woman is to establish an accepting environment to encourage
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mended by the authors to be included in the history were those about number of voids per day, urge/sensation to void, pain characteristics, symptom duration, dyspareunia, dysuria, and the relationship of pain to menstruation. Discussing the history of IC/PBS symptoms such as urgency, frequency, and nocturia is often painfully embarrassing for women. Therefore, nurses should project acceptance and ensure privacy while taking the history.
Collecting Objective Data Criteria for the physical examination have been discussed previously. Abdominal and pelvic examinations are done. Palpation of the external genitalia, pelvic floor muscles, bladder base, and urethra are also included (Hanno et al., 2014).
Conservative Care The major goals of treatment for IC/PBS are to interrupt a woman’s chronic pain experience and to improve her quality of life (Forrest & Mishell, 2009). Nurses can implement many of these interventions; however, the interventions should be based on a tiered approach aimed at relieving the most distressing symptoms first. Most authors advocate starting nursing care with conservative measures (timed voiding, etc.) before moving to more invasive management therapies such as intravesical therapy (Butrick et al., 2010). Supportive or conservative interventions are guided imagery, timed voiding,
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bladder training, and controlled fluid intake (Carrico, Peters, & Diokno, 2008; Davis, Brady, & Creagh, 2014; Panzera, 2007). An avoidance diet (no caffeine, spicy foods, carbonated drinks) is recommended by some authors (Baldwin, 2004; Davis et al., 2014; Gökyildiz & Beji, 2012; Newsome, 2003; Panzera, 2007). Other supportive measures include behavioral therapy, guided imagery, relaxation techniques, stress reduction, attendance at support groups, and sexual counseling. Pain management and massage are also helpful (Baldwin, 2004; Carrico, Peters, & Diokno, 2008; Davis et al., 2014; Gökyildiz & Beji, 2012; Howard, 2012; Langford, 2013; Panzera, 2007; Panzera, Reishtein, & Shewokis, 2011).
Health Education Health education is an area where nurses can excel in working with women with IC/PBS as well as their spouses, partners, and other significant family members (Warren, 2007). Education is needed for pain management, problems with sexual activity, diet, and exercise (Gökyildiz & Beji, 2012; Panzera, 2007; Newsome, 2003; Payne, 2013). Teaching about the appropriate
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method of taking medications prescribed for IC/PBS, adverse effects, and drug interactions is most important, because many medication regimens may be complex with adjustment often needed (Panzera et al., 2011).
Evaluation of Interventions Nursing evaluation involves working with a woman to determine if the chosen intervention is effective (Anderson & Zinkgraf, 2013). The family may also be included, if appropriate. Involving family is particularly important if they are providing care or support for self-care. Questions to ask include the following: What was your response to the intervention(s)? (O’Hare et al., 2013). Did the intervention(s) relieve pain? Did the intervention(s) alleviate bladder symptoms such as urgency and frequency? Was the woman empowered to do self-care and improve her quality of life? In an article by Lee et al. (2014), Internet education and short message service texting were found to be effective in improving quality of life and disease self-management.
Conclusion Of the nursing articles we reviewed, only two are considered the gold standard of randomized controlled trials (see Table 2). The remaining articles included case studies, opinions of respected authorities, nonexperimental research, and committee consensus. We recommend that additional randomized controlled trials of nursing interventions in women with IC/PBS be performed to better inform evidence-based nursing care of women with IC/PBS.
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Photo © Mike Watson Images / thinkstockphotos.com
THE MAJOR GOALS OF TREATMENT FOR IC/PBS ARE TO INTERRUPT A WOMAN’S CHRONIC PAIN EXPERIENCE AND TO IMPROVE HER QUALITY OF LIFE
Working with women to diagnose and manage symptoms of IC/PBS requires skillful nursing care. Thorough assessment for care outcomes is done in collaboration with the woman, other members of the health care team, and, if appropriate, the family. Evidence-based nursing interventions that focus on providing comprehensive nursing care in a caring, accepting manner will provide support for women dealing with this syndrome. Deliberate nursing follow-up and evaluation of each woman’s understanding and response to care will enhance positive outcomes. NWH
Cervigni, M., Natale, F., Mako, A., & Nasta, L. (2010). Painful bladder syndrome. In G. A. Santoro, A. P. Wieczorek, & C. I. Bartram (Eds.), Pelvic floor disorders: Imaging and multidisciplinary approach to management (pp. 551–562). Rome, Italy: SpringerVerlag Italia. Davis, N. F., Brady, C. M., & Creagh, T. (2014). Interstitial cystitis/painful bladder syndrome: Epidemiology, pathophysiology, and evidence-based treatment options. European Journal of Obstetrics, Gynecology and Reproductive Biology, 175(14), 30–37. doi:10.1016/j.ejogrb.2013.12.041 Dell, J. R. (2007). Interstitial cystitis/painful bladder syndrome: Appropriate diagnosis and management. Journal of Women’s Health, 16(8), 1181–1187. doi:10.1089/jwh.2006.0182 Erickson, D. R., & Windisch, A. K. (2006). Painful bladder syndrome. Contemporary Urology, 18(5), 14–26.
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Flander, N. (2013). Painful bladder syndrome and interstitial cystitis: Treatment options. British Journal of Nursing, 22(9), S26, S28–S33. Forrest, J. B., & Mishell, D. R., Jr. (2009). Breaking the cycle of pain in interstitial cystitis/painful bladder syndrome: Toward standardization of early diagnosis and treatment: Consensus panel recommendations. The Journal of Reproductive Medicine, 54(1), 3–14. French, L. M., & Bhambore, N. (2011). Interstitial cystitis/painful bladder syndrome. American Family Physician, 83(10), 1175–1181. Gökyildiz, S., & Beji, N. K. (2012). Chronic pelvic pain: Gynaecological and non-gynaecological causes and considerations for nursing care. International Journal of Urological Nursing, 6(1), 3–10. doi:10.1111/j.1749-771X.2011.01137.x Hanno, P. M. (2002). Interstitial cystitis-epidemiology, diagnostic criteria, clinical markers. Reviews in Urology, 4(suppl. 1), S3–S8. Hanno, P. M., Burks, D. A., Clemens, J. Q., Dmochowski, R. R., Erickson, D., FitzGerald, M. P., . . . Faraday, M. M. (2014). Diagnosis and treatment of interstitial cystitis/bladder pain syndrome. Linthicum, MD: American Urological Association Education and Research, Inc. Retrieved from https://www.auanet.org/education/guidelines/ic-bladder-pain-syndrome.cfm Homma, Y., Ueda, T., Tomoe, H., Lin, A. T., Kuo, H. C., Lee, M. H., . . . Interstitial Cystitis Guideline Committee. (2009). Clinical guidelines for interstitial cystitis and hypersensitive bladder syndrome. International Journal of Urology, 16(7), 597–615. doi:10.1111/j.1442-2042.2009.02326.x Howard, H. S. (2012). Sexual adjustment counseling for women with chronic pelvic pain. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 41(5), 692–702. doi:10.1111/j.1552-6909.2012.01405.x
Borch, M., Baron, B., Davey, A., Hattala, P., Kiernan, M., Rust, K., ... Yovanovich, J. (2011). Management of patients with interstitial cystitis: A case study. Urologic Nursing, 31(3), 183–189.
Lau, T. C., & Bengtson, J. M. (2010). Management strategies for painful bladder syndrome. Reviews in Obstetrics & Gynecology, 3(2), 42–48.
Butrick, C. W., Howard, F. M., & Sand, P. K. (2010). Diagnosis and treatment of interstitial cystitis/painful bladder syndrome: A review. Journal of Women’s Health, 19(6), 1185–1193. doi:10.1089/ jwh.2009.1702
Langford, A. T. (2013). Best practice guideline for managing interstitial cystitis in adult women (Doctoral dissertation). Retrieved from http://scholarcommons.sc.edu/etd/2279
Carrico, D. J., Peters, K. M., & Diokno, A. C. (2008). Guided imagery for women with interstitial cystitis: Results of a prospective, randomized controlled pilot study. The Journal of Alternative and Complementary Medicine, 14(1), 53–60. doi:10.1089/acm.2007.7070
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Lee, M. H., Wu, H. C., Lin, J. Y., Tan, T. H., Chan, P. C., & Chen, Y. F. (2014). Development and evaluation of an E-health system to care for patients with bladder pain syndrome/interstitial cystitis. International Journal of Urology, 21(suppl. 1), 63–68. doi:10.1111/iju.12336
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McDermott, P. (2009). Painful bladder syndrome/interstitial cystitis (history, epidemiology, symptoms, diagnosis and treatments). International Journal of Urological Nursing, 3(1), 16–23. doi:10.1111/j.1749-771X.2009.01059.x National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). (2013). Interstitial cystitis/painful bladder syndrome. Bethesda, MD: Author. Retrieved from http://kidney.niddk.nih .gov/kudiseases/pubs/interstitialcystitis Newsome, G. (2003). Interstitial cystitis. Journal of the American Association of Nurse Practitioners, 15(2), 64–71. doi:10.1111/j.1745-7599.2003.tb00353.x Niknejad, K. (2011). Diagnosing and treating interstitial cystitis. Cambridge, MA: Harvard Health Publications. Retrieved from http://www.health.harvard.edu/diseases-and-conditions/ diagnosing-and-treating-interstitial-cystitis Office on Women’s Health, U.S. Department of Health and Human Services. (2012). Interstitial cystitis/painful bladder syndrome fact sheet. Washington, DC: Author. Retrieved from http://www .womenshealth.gov/publications/our-publications/fact-sheet/ interstitial-cystitis.html O’Hare, P. G., 3rd, Hoffmann, A. R., Allen, P., Gordon, B., Salin, L., & Whitmore, K. (2013). Interstitial cystitis patients’ use and rating of complementary and alternative medicine therapies. International Urogynecology Journal, 24(6), 977–982. doi:10.1007/ s00192-012-1966-x Paget, L., Han, P., Nedza, S., Kurtz, P., Racine, E., Russell, S., . . . Von Kohorn, I. (2011). Patient-clinician communication: Basic principles and expectations. Washington, DC: National Academy of Medicine. Retrieved from http://nam.edu/perspectives-2011-patient-clinician-communication-basic-principles-and-expectations/ Panzera, A. K. (2007). Interstitial cystitis/painful bladder syndrome. Urologic Nursing, 27(1), 13–19.
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Panzera, A. K., Reishtein, J., & Shewokis, P. (2011). Sleep disruption and interstitial cystitis symptoms in women. Urologic Nursing, 31(3), 159–165, 172. Payne, C. (2013). The pain of painful bladder. Canadian Urological Association Journal, 7(9–10 suppl. 4), S203–S205. doi:10.5489/ cuaj.1627 Sant, G. R., & Hanno, P. M. (2001). Interstitial cystitis: Current issues and controversies in diagnosis. Urology, 57(6 suppl. 1), 82–88. Sant, G. R., Kempuraj, D., Marchand, J. E., & Theoharides, T. C. (2007). The mast cell in interstitial cystitis: Role in pathophysiology and pathogenesis. Urology, 69(4A suppl.), 34–40. doi:10.1016/j.urology.2006.08.1109 Šimunić, V., Banović, I., Ciglar, S., Jeren, L., Pavičić Baldani, D., & Šprem, M. (2003). Local estrogen treatment in patients with urogenital symptoms. International Journal of Gynecology & Obstetrics, 82(2), 187–197. doi:10.1016/S0020-7292(03)00200-5 Theoharides, T. C. (2007). Treatment approaches for painful bladder syndrome/interstitial cystitis. Drugs, 67(2), 215–235. doi:10.2165/00003495-200767020-00004 U.S. Food and Drug Administration. (2013). FDA approves Botox to treat overactive bladder. Silver Spring, MD: Author. Retrieved from http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ ucm336101.htm Vella, M., Robinson, D., & Cardozo, L. (2012). Painful bladder syndrome. Obstetrics, Gynaecology, and Reproductive Medicine, 22(2), 44–49. doi:10.1016/j.ogrm.2011.11.005 Warren, J. W. (2007). Interstitial cystitis/painful bladder syndrome. Urologic Nursing, 27(3), 185–189. Whitmore, K. E., & Theoharides, T. C. (2011). When to suspect interstitial cystitis. The Journal of Family Practice, 60(6), 340–348.
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Interstitial Cystitis/ Painful Bladder Syndrome NANCY J. MACMULLEN • LAURA A. DULSKI PATRICIA B. MARTIN • PAUL BLOBAUM
Interstitial cystitis/painful bladder syndrome (IC/PBS) is a chronic condition estimated to affect 3.3 million women in the United States (National Institute of Diabetes and Digestive and Kidney Diseases [NIDDK], 2013). The syndrome was originally referred to simply as interstitial cystitis (IC). However, in an effort to standardize terminology and distinguish the symptoms of lower bladder pain from those specific to cystitis, the International Continence Society and the International Cystitis Association renamed it painful bladder syndrome/interstitial cystitis (PBS/IC; Theoharides, 2007). The American Urological Association and the Agency for Healthcare Research and Quality (2013) use the term interstitial cystitis/bladder pain syndrome (IC/BPS; Hanno et al., 2014). Currently, there are continuing attempts at obtaining a more specific taxonomy for lower urinary tract symptoms (Homma et al., 2009). Therefore, bladder pain syndrome (BPS), painful bladder syndrome, IC/PBS, and IC/BPS are used somewhat interchangeably in the literature. For this article we use the term IC/PBS, which is the terminology used by the National Institutes of Health (NIDDK, 2013).
Definition The NIDDK (2013, p. 1) states that “IC/PBS includes all cases of urinary pain that can’t be attributed to other causes such as infection or urinary stones.” IC/PBS is an underdiagnosed condition, without clearly defined treatment pathways, posing a challenge to nurses and other clinicians. Abstract: Interstitial cystitis/painful bladder syndrome is a chronic condition affecting approximately 3.3 million women in the United States. It is defined by the National Institute of Diabetes and Digestive and Kidney Diseases as “urinary pain that can’t be attributed to other causes such as infection or urinary stones.” Because of the intimate nature of the symptoms, women are often reluctant to seek treatment. When they do, they require a care provider with specialized nursing skills. Nursing practice based on carefully reviewed literature will result in the provision of comprehensive and compassionate nursing care for women with interstitial cystitis/painful bladder syndrome. http://dx.doi.org/10.1016/j.nwh.2016.01.006 Keywords: bladder pain | evidence-based practice | interstitial cystitis | literature review | painful bladder syndrome
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Epidemiology As noted by the NIDDK (2013), an estimated 3.3 million women, or 2.7% of those 18 years of age or older, experience symptoms of IC/PBS. Lau and Bengston (2010) report that the lack of a standardized definition for IC/ PBS inhibits data collection; therefore, estimates of the number of people with the syndrome may not be accurate. The discrepancy is illustrated in research done by Berry et al. (2011), whose results show that the prevalence rate of IC/PBS may be larger. They estimate that 3.3 to 7.9 million U.S. women 18 years or older have symptoms of IC/PBS. Lau and Bengston (2010) also state that the incidence of the disease varies globally. In Finland, the prevalence was estimated as 450 per 100,000 and, in Austria, 306 per 100,000 (Homma et al., 2009). Although men have IC/PBS, women are disproportionately affected by a ratio of 10 to 1 (Lau & Bengston, 2010).
Nancy J. MacMullen, PhD, is chairperson and director of the Department of Nursing at Governors State University in University Park, IL. Laura A. Dulski, MSN, is an assistant professor in the School of Nursing at Resurrection University in Chicago, IL. Patricia B. Martin, DNP, is president of the Tinley Park Campus at Chamberlain College of Nursing in Tinley Park, IL. Paul Blobaum, MA, MS, is a full professor and a medical librarian at Governors State University in University Park, IL. The authors report no conflicts of interest or relevant financial relationships. Address correspondence to: [email protected].
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Theories of Causation There are many theories regarding the etiology of IC/PBS. The most likely are infection, autoimmune inflammation, mast cell activation, bladder epithelial permeability, neurogenic inflammation, and antiproliferative factor (Hanno, 2002). The etiology may be multifactorial, and it is difficult to pinpoint the exact pathophysiologic mechanisms for the syndrome. Butrick, Howard, and Sand (2010) propose that there may be a deficiency of the glycosaminoglycan layer on the bladder surface. This increases the permeability of the urothelium, allowing entrance of irritating solutes to leak from the urine into the bladder tissues. Neurogenic inflammation and immune response may also be involved. The pain experienced in IC/PBS is due to the infiltrated urine from the defective bladder mucosa, which induces submucosal inflammation and results in pain (Homma et al., 2009).
Associated Conditions No definitive risk factors have been identified for IC/PBS. Some researchers associate irritable bowel syndrome, fibromyalgia, and systemic lupus erythematosus with IC/PBS (Butrick et al., 2010). Others identify smoking, depression, generalized pain
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Staff nurses and advanced practice nurses alike need the appropriate education and specific skill sets essential for working with women with IC/PBS. Besides knowledge and clinical expertise in issues in women’s health and urology, nurses are called on to be empathetic and sensitive to women with embarrassing symptoms. Two of the symptoms of IC/PBS that can be most upsetting to women are urgency and frequency. Clinicians should be mindful that women with IC/PBS may be reluctant to discuss their symptoms; in addition, the syndrome can be confused with other diseases. Women might first seek treatment for their symptoms with their women’s health care practitioner and then be referred to an urogynecologist for further care. Given the complex nature of IC/PBS, the purpose of this article is to answer the question, What are the nursing interventions for women with IC/PBS that lead to best nursing practice? Nursing practice based on carefully reviewed evidence from the literature will result in the provision of comprehensive and compassionate nursing care. Although men also experience the symptoms of IC/PBS, this article focuses on women.
THE PAIN EXPERIENCED IN IC/PBS IS DUE TO THE INFILTRATED URINE FROM THE DEFECTIVE BLADDER MUCOSA, WHICH INDUCES SUBMUCOSAL INFLAMMATION AND RESULTS IN PAIN disorders, hysterectomy, and urinary tract infections (Homma et al., 2009). Allergies, migraine, chronic fatigue syndrome, and vulvodynia are also implicated (Niknejad, 2011). The possibility of heredity as a risk factor is beginning to be explored (NIDDK, 2013).
Symptoms There are a multitude of symptoms that occur in IC/PBS, and there may be symptom overlap (Sant, Kempuraj, Marchand, & Theoharides, 2007). For example, pain, which is the primary symptom of the syndrome, may be generated from the bladder, bowel, reproductive tract, and the pelvic floor musculature, making a definitive diagnosis problematic (Butrick et al., 2010). Lau and Bengston (2010) relate that the typical woman diagnosed with IC/PBS presents with bladder, urethral, or pelvic pain. The pain may be continuous or intermittent, and the intensity can differ as the bladder fills and empties (Borch et al., 2011). Urinary urgency, frequency, nocturia, bladder hypersensitivity, bladder discomfort, and bladder pain are common symptoms (Homma et al., 2009). Usually symptoms begin with a subacute onset followed by episodes of increased severity and subsequently a plateau; these episodes are referred to as flareups (Panzera, 2007).
Differential Diagnosis Diagnosis can be complicated because of the multiplicity of possible causes. Another factor inhibiting a differential diagnosis is the absence of any confirmatory diagnostic tests for IC/ PBS. Diagnosis is based on symptoms of urgency, frequency, and/or bladder/pelvic pain (Borch et al., 2011). The Office on Women’s Health (2012) delineates specific symptoms as diagnostic of IC/PBS (see Box 1). IC/PBS is a diagnosis of exclusion. The Office on Women’s Health (2012) states that the IC/PBS diagnosis requires differentiation from a urinary tract infection, bladder cancer, endometriosis, sexually transmitted infections, and kidney stones. The symptoms of urgency and frequency often seen in IC/PBS need to be distinguished from those similarly occurring with postmenopausal urogenital aging (Šimunić et al., 2003). Therefore, a thorough history, physical examination, and laboratory studies initiate the diagnostic process (Dell, 2007).
History A history should include questions regarding frequent urinary tract infections, pelvic surgery, spinal cord trauma, and central
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nervous system or autoimmune diseases (Theoharides, 2007). Some useful tools to aid clinicians in symptom assessment are frequency volume charts and symptom scores (McDermott, 2009). Frequency volume charts are records of fluid intake and output in a 24-hour period. Symptom scoring instruments delineate specific symptoms such as pain, urgency, frequency, and nocturia for women to identify. They may help women remember symptoms they may have forgotten. The frequency volume charts along with a symptom screening instrument aid in clarifying data needed for diagnosis.
Screening Two common questionnaires that can be used in screening women for IC/PBS are the Pelvic Pain and Urgency/Frequency Symptom Scale and the O’Leary–Sant Symptom and Problem Index (Cervigni, Natale, Mako, & Nasta, 2010). Both contain items about urgency, frequency, nocturia, and the relationship of symptoms to the woman’s quality of life. The Pelvic Pain and Urgency/Frequency questionnaire has items divided into two sections. One section contains ratings for symptoms. The other section asks the respondent to rate
BOX 1
IC/PBS Diagnostic Symptoms • Pain related to the bladder area that gets worse as the bladder fills • Urinary urgency • Urinary frequency • Pain, pressure, or tenderness in the pelvic area • Pain, pressure, or tenderness in the genital area • Pain during sexual intercourse (pain during ejaculation in men) • Bladder ulcers • Bleeding from the bladder Source: Office on Women’s Health, U.S. Department of Health and Human Services (2012).
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how much bother the symptoms cause. The ratings are then scored from zero to four, with a higher total score indicating a greater number of symptoms and bother.
MANY ASPECTS OF CARE FOR WOMEN WITH IC/PBS ARE MANAGED BY NURSES The O’Leary–Sant Index is divided into a symptom index and a problem index. Each section contains four questions with a rating scale. A total score of greater than six in each section indicates IC/PBS.
Physical Examination
Treatment Strategies Levels of Therapies
Treatment strategies for IC/PBS are multimodal, and the approach is to begin with conservative measures and progress to the more aggressive therapies as needed (Hanno et al., 2014). Lau and Bengtson (2010) categorize therapies as nonpharmacologic, oral pharmacologic, intravesical, and hydrodistention.
Nonpharmacologic Therapy Dietary modification and elimination of foods and beverages that aggravate the condition usually alleviate the symptoms of IC/PBS. Foods that irritate the bladder include chocolate, artificial sweeteners, alcohol, tomatoes, spices, caffeinated and citrus drinks, high-acid foods, yeast, aged cheese, vinegar, mayonnaise, onions, smoked and barbequed foods, soy sauce,
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Initial physical examinations should be performed by clinicians with the required education and clinical experience, including advanced practice nurses, and should include a complete gynecologic work-up (Whitmore & Theoharides, 2011) and pelvic examination. Examination of the perineum and pelvic floor muscle strength and tenderness, along with bladder palpation, are essential components of the physical examination (Association of Reproductive Health Professionals, 2008; Erickson & Windisch, 2006). These techniques are done to rule out other pathology. If no definitive diagnosis results, a referral to a urogynecologist for further studies
(cystoscopy, urodynamic testing) is warranted. Cystoscopy is no longer indicated for diagnosis but is used for exclusion of other urinary tract diseases such as bladder cancer (Lau & Bengston, 2010). Laboratory studies include urinalysis and bladder biopsy. Urinalysis and urine culture and sensitivity are done to differentiate IC/PBS from a urinary tract infection. Urodynamic studies are done to determine detrusor muscle overactivity (Cervigni et al., 2010; Homma et al., 2009; Sant & Hanno, 2001). Bladder biopsy may be done to rule out intraepithelial carcinoma (Homma et al., 2009).
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and fermented and fried foods (Erickson & Windisch, 2006; Warren, 2007). Behavior modification and other behavioral therapies, such as timed voiding, controlled fluid intake, pelvic floor muscle training, and bladder training, may also improve outcomes (Homma et al., 2009). Physical therapy, management of any coexisting diseases, and emotional support also may be used in the treatment of IC/PBS. Hydrodistention, or overfilling of the bladder, and surgical management are more aggressive treatment possibilities. Treatment of IC/PBS should be tailored to each individual woman’s needs based on the symptoms and their severity (Dell, 2007).
Pharmacologic Therapy The goal of pharmacologic therapy is to use the medication(s) that provide significant pain relief while trying to avoid adverse effects (Hanno et al., 2014). There are a number of oral medications (antipyretics, neuropathic analgesics, antihistamines,
tricyclic antidepressants, and anticonvulsants) available. Firstline treatments generally start with nonopioid medications and progress to more potent analgesics as indicated (see Table 1; Hanno et al., 2014). However, sodium pentosan polysulfate is the only oral agent for IC/PBS approved by the U.S. Food and Drug Administration (FDA; French & Bhambore, 2011). For bladder instillation, dimethyl sulfoxide is the only drug approved by the FDA (Vella, Robinson, & Cardozo, 2012). More recently, botulinum toxin A has been approved by the FDA for intradetrusor use for overactive bladder (FDA, 2013).
Nursing Care Nursing care is directly related to the treatment of choice. Many aspects of care for women with IC/PBS are managed by nurses. Advanced practice nurses work with women regarding drug therapy, if needed; appropriate tests; and conservative treatment measures. Staff nurses gather data to incorporate into
TABLE 1
Optional Medications for IC/PBS Medication Amitriptyline
Class of Drug Tricyclic antidepressant
Dosage 25 mg/day titrated over several weeks to 100 mg/ day if tolerated
Route Oral
Common Adverse Effects Anticholinergic adverse effects
Cimetidine
H2 receptor agonist
300–400 mg 2 times/day
Oral
Diarrhea, constipation, headache, fatigue, nausea, gynecomastia
Hydroxyzine
Anticholinergic– 10 mg/day titrated up to antihistamine 50 mg/day over several weeks if tolerated or 25 mg/day titrated to 50 mg/day over several weeks if tolerated
Oral
Drowsiness, dry mouth
Pentosan polysulfate
Cystitis agent
100 mg 3 times/day
Oral
Hair loss, nausea, diarrhea, dizziness, upset stomach, headache, rash, bruising, abnormal liver function test results
DMSO
Organosulfur
50 ml/week of 50% DMSO for 6 weeks
Intravesical
Bladder discomfort, garlic odor on breath or skin
Botulinum toxin A
Neurotoxin
100 units, may have to repeat
Intradetrusor Muscle weakness, urinary incontinence, dysphagia, diplopia, dysphonia, blurred vision, ptosis, respiratory distress
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TABLE 2
Evidence-Based Guidelines for Painful Bladder Syndrome Focus
Citation
Article Category
Intervention
Nursing assessment
Borch et al. (2011)
Case study
Assess the intensity and duration of pain (intermittent or continuous) as bladder fills and empties.
Butrick, Howard, & Sand (2010)
Literature review
Evaluate pain as a primary symptom. Identify the pain source: bladder, bowel, reproductive tract, pelvic floor musculature.
Forrest & Mishell (2009)
Respected authorities’ History: Question regarding any previous opinion diagnosis, pain and voiding histories, duration of symptoms, dietary triggers, allergy history, and sexual dysfunction. Daily symptom diary is useful. Pelvic examination includes assessing the presence of suprapubic, anterior vaginal wall, and/or urethral or bladder base tenderness.
Homma et al. (2009)
Clinical practice guidelines
Question the presence of urinary urgency, frequency, and nocturia.
Hanno et al. (2014)
Clinical practice guidelines
Basic assessment includes a careful history, physical examination, and laboratory examination. Baseline voiding symptoms and pain levels are obtained to determine treatment effects.
Nursing interventions
Agency for Healthcare Clinical practice Research and Quality guidelines (2013)
First-line treatments include patient education about normal bladder functioning and IC/BPS. Second-line treatments are self-care practices, stress management practices, multimodal pain management approaches, oral medications, and bladder instillations.
Association of Reproductive Health Professionals (2008)
Opinion of respected authorities and/or nationally recognized expert committees/consensus panels based on scientific evidence
Diet counseling, oral medications, gentle exercise, stress reduction techniques, pain relief strategies, bladder retraining programs, controlled fluid intake, and experimenting with different positions during sexual intercourse are suggested. Refer to the appropriate practitioners for alternative therapies such as acupuncture and acupressure.
Carrico, Peters, & Diokno (2008)
Experimental study, RCT
Guided imagery is supported as a potential therapy for interstitial cystitis. Key interventions recommended include keeping a pain diary, mastering relaxation techniques, using hypnosis, and restructuring thought.
Davis, Brady, & Creagh (2014)
Systematic review of a combination of RCTs, quasiexperimental or non-experimental studies only with or without meta-analysis
Behavioral therapy such as timed voiding, bladder training, and controlled fluid intake is helpful for controlling frequency/urgency. Stress reduction is useful for decreasing pain and urgency. Avoid caffeine, spicy food, and carbonated drinks, which may play a role in decreasing frequency of symptoms.
Note. PPS = pentosan polysulfate sodium; RCT = randomized controlled trial.
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Focus
Citation
Article Category
Intervention
Nursing interventions
Flander (2013)
Based on Administration of oral medications such as experiential and pentosan polysulfate or antidepressants may be evidence/case reports helpful. Immunosuppressants and antihistamines show potential. Noninvasive options include dietary and fluid modifications, yoga and meditation for stress relief, and analgesic drugs.
Gokyildiz & Beji (2012)
Literature review
Howard (2012)
Based on Direct patients to appropriate resources for experiential and sexual counseling with practitioners who nonresearch evidence have extensive experience in working with psychosocial issues related to human sexuality.
Panzera (2007)
Based on Patient education on diet, bladder retraining; experiential and low-impact exercise; acupuncture, massage nonresearch evidence relaxation, and stress reduction; cold packs to the source of pain and sitz baths; medications.
Panzera, Reishtein, & Shewokis (2011)
Nonexperimental study
Focus on symptom relief, behavior management techniques, and patient education. Help patients make lifestyle changes, use cognitive behavioral therapy to alleviate sleep problems, screen for depression/anxiety.
Langford (2013)
Systematic review or a combination of RCTs and quasi-experimental and nonexperimental studies only with or without meta-analysis
Begin with setting realistic goals for symptom management and quality of life. Interventions are initiated with conservative treatment, behavior modification, and coping strategies. One medication (PPS) significantly improved symptoms and quality of life.
McDermott (2009)
Based on First-line therapy includes diet and fluid experiential and intake/elimination. Alternative methods are nonresearch evidence yoga, acupuncture, and hypnosis.
Teaching pain management methods. Help patient evaluate treatment results. Education on issues regarding painful sexual activity, such as adopting more comfortable positions, finding the source of pain, and exploring ways of achieving orgasm. Educational guidance on diet, such as what foods to avoid; emotional stress reduction; and other sexual issues. Connect patient with self-help or support groups. The nurse is the coordinator of care and ensures communication activities between the health care team, the patient, and the family.
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TABLE 2
Evidence-Based Guidelines for Painful Bladder Syndrome (continued) Focus
Citation
Article Category
Intervention
Nursing interventions
Baldwin & Herr (2004)
Based on experiential and nonresearch evidence
Nurse is a facilitator and resource-gatherer to model the client’s circumstances and to role-model key behaviors. Promote self-care and optimal level of functioning through a self-care plan. Pain management, psychological referral, rest, and increasing fluids are part of the plan.
Baldwin (2004)
Case report
Referral to counseling, daily exercise, and diet program.
National Institute of Diabetes and Digestive and Kidney Diseases (2013)
Opinions of Bladder training, a voiding diary, and respected authorities stretching exercises are suggested. and/or nationally recognized expert committees/consensus panels based on scientific evidence
Newsome (2003)
Literature review
Payne (2013)
Based on Begin with education, self-care, stress management, experiential and and pain management. Additional therapy may nonresearch evidence include oral medications, bladder instillation, and pelvic floor physical therapy.
Warren (2007)
Based on Work with patients to understand medications, diet experiential and modifications, and avoidance of exacerbating activities. nonresearch evidence Family members and spouses should be included.
Anderson & Zinkgraf (2013)
Descriptive survey/qualitative data
Partner with the patient to evaluate therapy options. Once the therapy is chosen, evaluate its effectiveness. Evaluation includes not only the patient response but also the risk/benefit of the therapy used.
Anuforo, Parletti, & Guffman (2012)
Nonexperimental study
No one single treatment emerged as superior over the others. However, a low-acidic and low-caffeine diet education in conjunction with other therapies may improve symptoms.
O’Hare et al.
Descriptive survey, experimental study, RCT
Therapies perceived to be helpful by patients included dietary management and pain management. Adjuncts such as physical therapy, heat and cold, meditation, relaxation, acupuncture, stress reduction, exercise, and sleep hygiene were also helpful.
Lee et al. (2014)
RCT
An e-health (Web) system to promote a healthy diet and lifestyle and a mobile phone application for questions and answers during symptom flares were found to be effective in improving the quality of life and alleviating symptoms in patients with bladder pain syndrome/interstitial cystitis.
Nursing evaluation
Symptom relief through teaching about diet and medications and providing emotional support.
Note. PPS = pentosan polysulfate sodium; RCT = randomized controlled trial.
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each component of a nursing plan of care, initiate the plan, and evaluate the outcome. Aggressive treatment strategies, such as surgery, require collaborative care with the physician or surgeon. Ideally, all nursing care should be evidence based. Toward that end, we reviewed the medical and nursing literature to identify the nursing interventions for women with IC/PBS that lead to best nursing practice.
Review of the Literature Working with a medical librarian, we performed a systematic review of the literature using CINAHL Plus and Medline/PubMed for the years 2004 through 2014. Keywords and subject headings used in the search were bladder pain syndrome, interstitial cystitis, interstitial cystitis/painful bladder syndrome, patient care, and nursing interventions. Journal articles chosen for inclusion in the literature search had to focus on material that could be used for nursing interventions for IC/PBS, and literature reviewed had to be global in scope.
open communication. Basic principles and expectations of client–clinician communication are described by Paget et al. (2011). The basic principles of client–clinician communication are mutual respect, harmonized goals, a supportive environment, appropriate decision partners, the right information, transparency, full disclosure, and continuous learning. These principles, particularly the projection of an accepting, supportive environment, set the stage for a clinician to collect client data for assessment. Questions required for accurate assessment data may be of an embarrassing nature. Therefore, this process can often be stressful for the client, but these steps are the basis for further intervention.
Collecting Subjective Data Eliciting accurate, subjective, and objective data from a woman requires skillful interviewing and physical assessment skills by nurse clinicians. Three articles and one guideline (Borch et al., 2011; Butrick, Howard, & Sand, 2010; Hanno et al., 2014; Homma et al., 2009) were reviewed. Specific questions recom-
ONE OF THE FIRST INTERVENTIONS THAT A NURSE DOES FOR OR WITH A WOMAN IS TO ESTABLISH AN ACCEPTING ENVIRONMENT TO ENCOURAGE OPEN COMMUNICATION In addition, we searched professional nursing and medical Web sites (National Kidney and Urologic Diseases Information Clearinghouse, Society of Urological Nursing, International Bladder Pain Foundation) for the latest medical, nursing, and consumer education information. We consulted national guidelines such as those from the Agency for Healthcare Research and Quality and the American Urological Association, and we searched the databases of the Cochrane Library, Health Service/Technology Assessment Texts, and Joanna Briggs Institute. The topics we reviewed included nursing care, symptom management, diagnostic testing, and treatments.
Results We reviewed 63 articles and 2 guidelines; 17 of the articles and 1 guideline contained topics appropriate for nursing interventions. Most articles that were available and selected for review as evidence were opinions of respected authorities and/ or nationally recognized expert committee/consensus panels. We also included articles that were experiential and presented nonresearch evidence (see Table 2).
Nursing Interventions Nursing interventions are what nurses do for a patient to enhance health outcomes (Berman, Snyder, & Frandsen, 2016). One of the first interventions that a nurse does for or with a woman is to establish an accepting environment to encourage
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mended by the authors to be included in the history were those about number of voids per day, urge/sensation to void, pain characteristics, symptom duration, dyspareunia, dysuria, and the relationship of pain to menstruation. Discussing the history of IC/PBS symptoms such as urgency, frequency, and nocturia is often painfully embarrassing for women. Therefore, nurses should project acceptance and ensure privacy while taking the history.
Collecting Objective Data Criteria for the physical examination have been discussed previously. Abdominal and pelvic examinations are done. Palpation of the external genitalia, pelvic floor muscles, bladder base, and urethra are also included (Hanno et al., 2014).
Conservative Care The major goals of treatment for IC/PBS are to interrupt a woman’s chronic pain experience and to improve her quality of life (Forrest & Mishell, 2009). Nurses can implement many of these interventions; however, the interventions should be based on a tiered approach aimed at relieving the most distressing symptoms first. Most authors advocate starting nursing care with conservative measures (timed voiding, etc.) before moving to more invasive management therapies such as intravesical therapy (Butrick et al., 2010). Supportive or conservative interventions are guided imagery, timed voiding,
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bladder training, and controlled fluid intake (Carrico, Peters, & Diokno, 2008; Davis, Brady, & Creagh, 2014; Panzera, 2007). An avoidance diet (no caffeine, spicy foods, carbonated drinks) is recommended by some authors (Baldwin, 2004; Davis et al., 2014; Gökyildiz & Beji, 2012; Newsome, 2003; Panzera, 2007). Other supportive measures include behavioral therapy, guided imagery, relaxation techniques, stress reduction, attendance at support groups, and sexual counseling. Pain management and massage are also helpful (Baldwin, 2004; Carrico, Peters, & Diokno, 2008; Davis et al., 2014; Gökyildiz & Beji, 2012; Howard, 2012; Langford, 2013; Panzera, 2007; Panzera, Reishtein, & Shewokis, 2011).
Health Education Health education is an area where nurses can excel in working with women with IC/PBS as well as their spouses, partners, and other significant family members (Warren, 2007). Education is needed for pain management, problems with sexual activity, diet, and exercise (Gökyildiz & Beji, 2012; Panzera, 2007; Newsome, 2003; Payne, 2013). Teaching about the appropriate
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method of taking medications prescribed for IC/PBS, adverse effects, and drug interactions is most important, because many medication regimens may be complex with adjustment often needed (Panzera et al., 2011).
Evaluation of Interventions Nursing evaluation involves working with a woman to determine if the chosen intervention is effective (Anderson & Zinkgraf, 2013). The family may also be included, if appropriate. Involving family is particularly important if they are providing care or support for self-care. Questions to ask include the following: What was your response to the intervention(s)? (O’Hare et al., 2013). Did the intervention(s) relieve pain? Did the intervention(s) alleviate bladder symptoms such as urgency and frequency? Was the woman empowered to do self-care and improve her quality of life? In an article by Lee et al. (2014), Internet education and short message service texting were found to be effective in improving quality of life and disease self-management.
Conclusion Of the nursing articles we reviewed, only two are considered the gold standard of randomized controlled trials (see Table 2). The remaining articles included case studies, opinions of respected authorities, nonexperimental research, and committee consensus. We recommend that additional randomized controlled trials of nursing interventions in women with IC/PBS be performed to better inform evidence-based nursing care of women with IC/PBS.
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Photo © Mike Watson Images / thinkstockphotos.com
THE MAJOR GOALS OF TREATMENT FOR IC/PBS ARE TO INTERRUPT A WOMAN’S CHRONIC PAIN EXPERIENCE AND TO IMPROVE HER QUALITY OF LIFE
Working with women to diagnose and manage symptoms of IC/PBS requires skillful nursing care. Thorough assessment for care outcomes is done in collaboration with the woman, other members of the health care team, and, if appropriate, the family. Evidence-based nursing interventions that focus on providing comprehensive nursing care in a caring, accepting manner will provide support for women dealing with this syndrome. Deliberate nursing follow-up and evaluation of each woman’s understanding and response to care will enhance positive outcomes. NWH
Cervigni, M., Natale, F., Mako, A., & Nasta, L. (2010). Painful bladder syndrome. In G. A. Santoro, A. P. Wieczorek, & C. I. Bartram (Eds.), Pelvic floor disorders: Imaging and multidisciplinary approach to management (pp. 551–562). Rome, Italy: SpringerVerlag Italia. Davis, N. F., Brady, C. M., & Creagh, T. (2014). Interstitial cystitis/painful bladder syndrome: Epidemiology, pathophysiology, and evidence-based treatment options. European Journal of Obstetrics, Gynecology and Reproductive Biology, 175(14), 30–37. doi:10.1016/j.ejogrb.2013.12.041 Dell, J. R. (2007). Interstitial cystitis/painful bladder syndrome: Appropriate diagnosis and management. Journal of Women’s Health, 16(8), 1181–1187. doi:10.1089/jwh.2006.0182 Erickson, D. R., & Windisch, A. K. (2006). Painful bladder syndrome. Contemporary Urology, 18(5), 14–26.
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