- Email: [email protected]
Symptom management in patients with AIDS
Symptom Management Kathleen M. McMahon
in Patients With AIDS and Noreen Coyne
N 1981 young homosexuals with unusual illnesseswere admitted to oncology units for diagnosis and treatment of problems that later became known as acquired immunodeficiency syndrome (AIDS). Oncology nurses applied their substantialknowledge, experience, and skill to this patient population. Transferring substantialexpertise regarding family care, symptom management, bereavement,care of the immunocompromisedpatient , nutrition, and sexuality, these oncology nurses contributed greatly to the care of patients with AIDS. Since the earliest days, cancer nurses have directed extensive care efforts and psychosocialsupport to thesepatients. In a 1983study performedat a comprehensive cancer center located in New York, it was found that AIDS patients required considerably more nursing care hours than the other oncology and bone marrow transplant patients on the medical units. Special emotional needs,intravenous (IV) care, isolation monitoring, and incontinence were indicated as causative factors.’ When this study was repeated in 1988, the findings indicated that nursing care hours neededby AIDS patients had decreased.Allotted care time toward special teaching and emotional needs had abated. This was attributed to several factors: a deliberate attempttoward early detection of psychosocial stressorsand identification of the at-risk population, community and extendedfamily intensive involvement in supportive and educative programs for AIDS/HIV patients, and the development of comfort and expertise in the oncology nursesthrough experiencewith many AIDS patients. The situation had changed from a crisis diseaseto a chronic diseasewith urgent-care episodes. However, nursing care hours can remain very high unless these factors are addressed. The Oncology Nursing Society position paper on HIV-related issues* states that cancer nurses have the responsibility to be involved at all levels in HIV-related education. Among the seven recommendations of this report, one is related to symptom management concerns: “Oncology nursesin particular are urged to assumeleadership roles in responding to the challengespresentedby HIV.“’ Oncology nurses have responded to the challenge in many HIV-related arenas.3
I
Seminars
in Oncology
Nursing,
Vol 5, No 4 (November),
1989:
pp 289-301
SYMPTOM MANAGEMENT AND ONCOLOGY NURSING
Oncology nurses have targeted symptom managementas one of their major concerns. Countless articles regarding clinical care of the immunocompromised host in regard to infections, infection control, mouth care, bowel management, safety, sexuality, nutrition, knowledge deficits, and others have been written. Cancer nursing researchclearly addressesfatigue, nausea,impaired mucous membranes, and other issues that compound the magnitude of problems that AIDS patients encounter. But how can we distinguish between effective intervention with AIDS versuscancerpatients?What similarities and differences exist? Our primary objective is to explore the nature of symptomsAIDS patients experience, the resultant distress, and the nursing management involved. We hope to differentiate the nursing management strategiesfor responsesto AIDS versus responses to cancer. Our focus will be on the whole person becausefacets of men and women are not separable. Also, our fundamentalpremiseis that a person cannot be separatedfrom his or her environment. Environmental issues, ie, accessto care and legal statutes regarding confidentiality, and internal issues, ie, self-esteem,stresstolerance and history, and vulnerability all blend to affect how an individual with AIDS faces the symptoms of illness. SIMILARITIES AND DIFFERENCES
Staging System Presently, the two distinct classification systems for HIV infection are different from staging canFrom the Memorial Sloan-Kettering Cancer Center. New York, NY. Kathleen M. McMahon, RN, MEd, OCN: Nurse Clinician II-AIDS, Memorial Sloan-Kettering Cancer Center, Room M1935, New York, NY; Member, New York City .41DS Task Force; Noreen Coyne, RN, MS: Home Care Coordinator, Visiting Nurse Service of New York, Discharge Planning Department, MRI 1010, Memorial Sloan-Kettering Cancer Center, New York, NY; formerly, Visiting Nurse-in-Residence. Bailey House, New York, NY. Address reprint requests to Kathleen M. McMahon, RN, MEd, OCN. Memorial Sloan-Ketiering Cancer Center. Room M-1935, 1275 York Ave. New York, NY 10021, 01989 W.B. Saunders Company. 0749-208118910504-0010$05.00/0 289
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cer: cancer staging does not include precancerous conditions or risk factors and staging in diagnosis is specific to the type of cancer. A similarity is that accompanying markers such as immunologic parameters, presence of systemic symptoms (ie, B symptoms), or specific laboratory tests are included. The Centersfor DiseaseControl’s classification system4subdivides HIV infection into four groups: acute HIV infection, asymptomaticHIV infection, persistentgeneralizedlymphadenopathy,and other HIV disease.[Seethe article by Vlahov elsewhere in this issue.] This last group is subdivided into five subgroupsclarifying the manifestation of HIV infection. It is a useful clinical classification schemethat removes someof the confusion posed by earlier terms such as ARC (AIDS-related complex) . The other classification system is the Walter Reed Staging Classification for HIV Infection.’ This staging system clearly combines clinical and immunologic observationsand facilitates the identification of uniformity in patients. These systems are applicable because of the clearly identified etiology of HIV infection and AIDS. All manifestationsof diseaseare related to the destruction causedby the virus with subsequent patient signs and symptoms. Cancer, on the other hand, doesnot have one clearly identified etiologic agent. Because of this, a staging system with branchesidentifying the totality of the cancermanifestations is inconceivable. Infectivity Although the risk of becoming infected with HIV while managing the symptoms of an AIDS patient is extremely rare, it is not impossible.6 In cancer, nursesexpose themselvesto potential carcinogens, infectious agents, and radiation. However, the risk of acquiring a potentially fatal illness (HIV), heightens awarenessand anxiety regarding contact with blood and body fluids. Universal precautions have been initiated to reduce exposure. [See the article by Jacksonand Lynch, elsewhere in this issue, for a complete discussionof risks and precautions.1 ONCOLOGY NURSES’ CONTACT WITH AIDS-INDICATOR DISEASES
Some AIDS-related illnesses are also seen in cancer patients. These may include herpes zoster,
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cytomegalovirus (CMV) infections, Pneumocystis carinii pneumonia, oral candidiasis and nonHodgkin’s lymphoma. However, severity of disease,an aggressivenature, a poor responseto therapeutics (at times requiring lifetime treatments), and an unpredictable diseasecourse mark the separation. Some indicator diseasesin HIV infection are rarely found in cancer patients. The following is a review of some of these illnesses: Pneumocystiscarinii Pneumonia Pneumocystis carinii pneumonia (PCP) is the most common life-threatening opportunistic infection in HIV-infected patients. It is the initial manifestation of AIDS in 65% of HIV-infected patients, and it commonly reoccurs. Before the AIDS epidemic, PCP occurred in other patients who were immunocompromisedby hematologic malignancies, organ transplantation, prematurebirth, or immunosuppressivedrug regimens. Qualitatively, AIDS-related PCP differs significantly from lymphoma or steroid-related PCP.’ AIDS-PCP is a more indolent, subtle disease.Patients may experience a prolonged period of fatigue and weakness with fever, a nonproductive cough, decreasedexercise tolerance, chest tightness, and shortnessof breath. Rarely do AIDS patients present with acute, rapidly progressiverespiratory insufficiency leading to respiratory failure as noted to be PCP’s course in other immunocompromised patients. Thesenon-AIDS patients also respondwell to therapeuticsand experiencefew adverseeffects; in addition, relapse is uncommon. Early detection of PCP appearsto improve survival. Azidothymidine (AZT) therapy can reduce the severity and frequency of PCP but does not prevent it nor eliminate the associatedmorbidity and mortality. Diagnosis is routinely established via a transbronchial lavage and biopsy. Therapy with Bactrim (trimethoprim-sulfamethoxazole, Roche Laboratories, Nutley, NJ) or pentamidine is initiated, with most patients requiring hospitalization. A 3-week course of intravenous (IV) or oral Bactrim can be successful, yet, for reasons still unclear, many patients exhibit a high degree of sensitivity to Bactrim in the form of rashes,fever, and neutropenia. A 3-week course of IV pentamidine can also be successful, yet has common adverse effects in nephrotoxicity, hypoglycemia, de-
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layed-onset hyperglycemia, neutropenia, and pancreatitis.7 Prophylactic or suppressive therapy is of primary importance becauseof the frequency of relapse or reoccurrence. Some AIDS patients can tolerate the oral Bactrim regimen commonly used in cancertherapy. Aerosolized pentamidine shows promise as a well-tolerated and effective prophylactic treatment.
mosexuals. The diseasecan occur at any stage of HIV infection. About 50% of the patients present with pulmonary disease. Diagnosis is problematic because most patients are anergic when skin tested. Cultures of sputum or tissue biopsies, chest roentgenograms,and clinical evaluation establish the diagnosis. Mycobacterium tuberculosis readily respondsto the standardthree-drug regimen of isoniazid , rifampin , and ethambutol.
Cryptosporidium
Toxoplasma gondii
Cryptosporidium was not thought to infect humans. A human case of this veterinary protozoa1 pathogenwas first reportedin 1976.8Nearly 4% of AIDS patients have this illness. As more laboratories learn how to detect cryptosporidium, the diagnosis will increase.’ It causes a persistent, severe, watery diarrhea. It occurs in immunocompetentpeople, but the diarrhea is milder and self-limiting. ’ Medical therapy has been largely unsuccessful. Spiramycin has been useful in somepatients,7and other experimental therapies are being tried.” Other measuressuch as antidiarrheals, protection of surrounding intact skin and infection controlto prevent fecal/oral route transmission to other AIDS patients-are essential.
Toxoplasma gondii infections are asymptomatic in the immunocompetent person. Approximately 20% to 90% of healthy adults are infected. ‘I Its primary host is the cat. At least 3% of AIDS patients have T gondii, of which the majority of cases are due to reactivation of disease. Specific determinants of reactivation are unknown. 7 Clinically, focal encephalitis develops over weeks, and may include hemiparesis, seizures, severeand unremitting headaches,and sometimesfever. Diagnosis is made by brain biopsy. Other measures are not as reliable.7 Medical therapy of pyrimethamine plus sulfadiazine is started. No regimen has yet been proven by clinical trial to be effective. However, these drugs often improve symptoms and lesions on computed tomography scan.‘*-14Patients respond well, but treatment is frequently discontinued due to the rate (60%) of adversereactions.l4 These reactions (neutropenia, rash, and fever) increase the potential for additional problems in these already-at-risk patients. However, without treatment, relapse occurs
Mycobacterium Mycobacterium avium intracellulare (MAI) OCcurs frequently in AIDS patients. It has been isolated from at least 40% to 60% of patients before they die and is usually a disseminated disease.7 Although it is clearly identified, the signs and symptoms of MAI infection are vague. Many AIDS patients develop fever, diarrhea, weight loss, and lymphadenopathy that are not clinically explained. Although other pathogensare not identified, MAI is present.Treatmentfor MAI is begun while other pathogensare sought. Again, medical treatment has been largely unsuccessful. No clear regimen is outstanding in controlling this infection. Treatment with clofazimine, cyclosenine, ethionamide, amikacin, or ethambutol may be initiated.7 Other mycobacterial infections in AIDS patients are rare. The exception is Mycobacterium tuberculosis (TB) of which a rising rate appearsto be found amongHIV-infected drug abusers,the poor, or the homeless.Thesepeople, having an environmental predisposition, have higher rates than ho-
Cytomegalovirus
Although cytomegalovirus (CMV) infection is common and occurs in the cancer population, its manifestation asCMV retinitis doesnot. Cytomegalovirus causesmore than 95% of the retinochoroiditis casesseen.7HIV-infected patients with a severedepressionof their T, lymphocyte number usually complain of floaters, blurred vision, and decreased vision. Diagnosis, made clinically through a characteristic fundoscopic examination by an experiencedophthalmologist, discloses yellow-white exudate, hemorrhage,edema,vessel attenuation, and sheathing. The infection progresses at a variable rate to complete visual loss. Treatment with gancyclovir is effective but, as is customary in AIDS-related opportunistic infections, relapse is common after therapy is discontinued.
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Maintenance therapy may involve lifetime treatment. Becauseneutropenia often results, the difficult dilemma may need to be faced-whether to stop potentially life-saving therapy (AZT) or the potentially sight-saving therapy (gancyclovir). In time, it is hoped that medications such as granulocyte-macrophagecolony-stimulating factor may offset the need for this decision. Other agents(eg, foscarnate)and other routes (oral and intravitreol) are being studied. Wasting Syndrome (Slim’s Disease)
Not as commonin America as in Africa or Haiti, the unrelenting wasting syndrome is consideredto be AIDS in which the gastrointestinal manifestation predominates. I5 The syndrome comprises weight loss, intermittent, nonbloody diarrhea, anorexia, and marked change in taste. Currently, there are no clinical trials in which therapeutic antivirals or immune modulators are being tested. Megesterol acetateis presently in clinical trial for AIDS patients with anorexia and cachexia. Total parenteral nutrition can be safely administered to AIDS patients16;however, a limited study showed that most patients remain in a negative nitrogen balance reflecting a severe catabolic state. Total parenteral nutrition is also very costly. The symptom managementis comparableto that of patients with cancer cachexia syndrome: dietary manipulations, prevention of infection, maintenanceof skin integrity, and the bolstering of quality-of-life interventions. Malignancies
Oncology nurses are familiar with the diseases, pathophysiology, and treatment of the AIDS malignancies. The characteristics that distinguish these malignancies in the HIV-infected patient include abnormal sites at presentation, unusual pattern of spread, marked lack of lasting responseto routine chemotherapeutic agents, increased virulence, involvement of extranodal sites, and the presenceof concomitant HIV indicator diseases, ie, wasting syndrome, infections, dementia. THE NATURE OF THE SYMPTOMS
AIDS patients have numerous symptoms. The authors have observedmore than 70 symptoms in the various patients they have treated (see Table 1). Symptomshave beenselectedfor discussionby
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frequency, severity, and management strategies, vis a vis cancer patients. Many of the interventions for symptoms in AIDS parallel interventions used with symptoms associatedwith other illnesses. But, as previously stated, people with AIDS often experience other complications, ie, lifetime schedule of medications, adverseneutropenic reactions to vital drugs, illegal drug use, or estrangementfrom family of origin, which become related to their care. Also, one uncontrolled problem may aggravateanother, the cause of the symptom may be unknown, and standard medical interventions may be ineffective. ” Symptoms and their related emotional distress may lead patients to delay, reduce, or terminate treatment. Becausethese decisions can negatively impact on optimal treatment regimens, successful coping with symptomsis a priority nursing goal. In one study of cancerpatients’* the number of symptoms experienced, not the severity or the duration, was correlated with distress. Vague side effects such as fatigue were more distressing than specific, acute ones, and greater distress was associated with unsuccessful attempts to overcome the symptoms. REVIEW OF SYMPTOMS
Blindness/Decreased Visual Acuity
Decreased visual acuity may begin suddenly with agonizing consequences.Many patients dread its development. Becauseof a shortened life expectancy and other HIV conditions (generalized weakness,peripheral neuropathies, frequent hospitalizations), full rehabilitation is not a realistic goal. The use of a guide dog or proficiency at Braille may never be achieved. Nursing interventions” focus on the prevention of social isolation, optimal independence,and structuring of available supports (see Table 2). Dementia
Although HIV-infected personsmay experience multiple acute and subacutesyndromes related to central nervous system (CNS) manifestations of disease,the AIDS dementia complex (ADC) is the most clinically striking syndrome because of its cognitive, motor, and behavioral consequences.20 Initial symptoms are memory problems and concentration difficulties. Patients may complain of “slow thinking” and have difficulty following
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Table 1. Common HIV/AIDS-Related Symptoms Physical Anorexia Nausea Vomiting Candidiasis Oral warts Periodontitis Stomatitis Perirectal infections Moderate to severe weight loss Inability to sustain or gain weight Oral hairy leukoplakia Diarrhea: mild, moderate, severe Gingivitis Constipation Dysphagia Abdominal cramping Pruritis Lesions Skin breakdown Decubitus ulcer formation Abrasions Rash Wounds Impetigo Psoriasis Xerosis Folliculitis Vasculitis Dermatitis Premature aging Eruptions of infection Candida albicans, dermatophytosis, athlete’s foot, varicella zoster, molluscum contagiosum, furuncolosis, staphylococcus, syphilis, herpes simplex 1 or 2 Dyspnea, at rest or exertion Cough, productive Cough, nonproductive Bronchospasms Orthopnea Tachypnea Fever Night sweats Fatigue Lymphadenopathy Incontinence, urinary Incontinence, fecal Peripheral neuropathy Pain
Communication Dyslogia Expressive aphasia Delayed verbal responses Mutism
Relationships Social isolation Social withdrawal Resistance to change
due to possible
discrimination
In
changed environment Apathy Depression Agitation Psychosis Paranoia Loss of job Loss of home Strained personal relationships Continued substance abuse or alcoholism Financial insecurity Concern over increasing dependency state Altered body image
Perception Memory loss Headache Blindness Decreased visual acuity Obtundation Dementia Confusion Weakness Impaired insight or judgement Forgetfulness Altered sleep-wake patterns Hallucinations Impaired concentration Vacant stare Hearing loss Fears of alienating care providers
Mobility Hemiparesis Paralysis Tremor Myoclonus Loss of coordination Impaired handwriting Leg weakness Spasticity Hypet-flexia Gait ataxia Failure to thrive
Emotion Bereavement Fear of dementia,
dependency,
abandonment,
blindness
McMAHON AND COYNE
294 Table 2. AIDS-Associated Symptoms and Nursing Interventions
Sensory-Perceptual Alterations Many symptoms may be associated with this nursing diagnosis. They include impaired memory, “slowed” thinking, impaired concentration, dementia, headache, obtundation, confusion, lethargy, impaired vision, blindness, peripheral neuropathy, social isolation, social withdrawal, forgetfulness, or confusion. Etiologic factors to be considered include opportunistic CNS malignancies and infections, HIV infection of the CNS or peripheral nervous system, site-specific opportunistic infection such as CMV retinitis or herpes roster, the adverse effects of medications, fluid and electrolyte imbalances, metabolic and vascular disruptions, social ostracism, and discrimination. Blindness/Decreased Visual Acuity Nursing Interventions Special Features Probable Cause CMV retinitis
Rare causes of visual disturbances Toxoplasma Cryptococcus
gondii neoformans
MycobactarieIfungi
May develop suddenly Antiviral intervention should be started as soon as possible to prevent extension of visual loss. Many patients cannot remain on Gancyclovir* due to neutropenia. Other antiviral agents, ie, foscarnet, are in clinical trials (l-gOO-TRIALS A). Many patients dread the development of blindness. Full rehabilitation is frequently not a realistic goal. The use of a guide dog or proficiency at Braille may never be achieved. Medical treatment is life-long.
Instruct on symptoms Ensure prompt ophthalmic consultation upon development of initial symptoms. Provide psychosocial and spiritual support. Combat social isolation and withdrawal. Focus on anxiety and frustration management. Arrange for outpatient or home care infusion therapy. Teach administration of IV therapy. Activate referrals as appropriate to: blind organizations for the blind; ie, association for the blind occupational retraining programs, home care agencies, meals on wheels, mental health professionals. Promote assistive devices: Talking clocks Cane, traveling with a sighted person Tactile identification markers Teach measures enhancing independence and safety: Fire prevention and response Hygiene and grooming Meal preparation Communication Transportation Housekeeping and laundry
Drmrntla Probable Cause HIV
Other causes in a differential diagnosis CNS malignancy CNS infection Metabolic complications Cerebrovascular complications Adverse effects of medications
Special Features
Nursing Interventions
ADC comprises cognitive, motor, and behavioral symptoms. Many patients and care partners dread the development of dementia. Diagnosis may be difficult to establish. It involves a thorough assessment. The vast majority of AIDS patients have some evidence of early-stage dementia. ADC patients’ symptoms can wax and wane. Progression ensues at a variable rate.
Assist with neuropsychiatric assessment and medical evaluation. Provide support, guidance for families/friends. Refer for home care, “buddy” volunteer, day-care residential living, or respite care as appropriate. Refer to American Red Cross for home care training program, transportation. Assess need for medication. Administer and supervise, ie, haloperidol, lorarepam as prescribed. Promote timed drug dosage, pillbox alarms, checklists. Obtain physical therapy consult for gait training with assistive devices.
(Continued
on fohwing
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Table 2. AIDS-Associatad Symptoms and Nursing Intwventions
(Cont’d)
Use reminder devices: telephone calls, appointment book, ‘to do’ lists, checklists, maps of food store. Advocate antiviral research therapy as appropriate. Model interactive techniquesSimplify communications and logistics.
Inaffactivo Braathing Patterns Many symptoms may be associated with this nursing diagnosis. The most common are the constellation of signs and symptoms that patients who are developing PCP demonstrate. They include a fever with a dry, nonproductive cough, chills. exercise intolerance, and dyspnea. There are other etiologic agents that cause altered breathing patterns in patients with AIDS. The symptoms include productive coughs, wheezing, and dyspnee. These other underlying concerns include bacterial endocarditis with resulting valvular disease, congestive heart failure, CMV pneumonia, KS lesions in the main lung structures, pleural effusion, pneumothoraxes, recurrent bacterial respiratory infections, or tuberculosis. Cough Nursing Interventions Probable Cause Special Features PCP
Other common causes of cough: Bacterial, mycobacterial, or CMV pneumonia KS lesions in the lungs Pneumothorax
Those HIV-infected patients whose T-cell count is <400/mm3 are most at risk for PCP. Symptoms may worsen during first days of treatment for PCP. Bactrim and aerosolired pentamidine treatments are used to prevent PCP episodes.
Instruct AIDS patients on initial symptoms and signs of PCP. Instruct patient on PCP prophylactic therapy. Ensure compliance. Encourage patient to seek urgent treatment at the initiation of symptoms of PCP. Assist in diagnostic workup, ie, sputuminduction cultures, bronchoscopy. Administer Bactrim, pentamidine, dapsone, fansidar, solumedrol, or other experimental agent as ordered for PCP. Provide distraction, socialization, clean environment for prolonged hospitalization.
Potential Fluid Volume Deficit; Impaired Tissue Integrity Many symptoms may be associated with these diagnoses. They include anorexia, nausea, vomiting, candidiasis, oral warts, weight loss, perirectal infections, inability to sustain or gain weight, oral hairy leukoplakia, diarrhea, stomatitis, gingivitis, and marked change in taste. Etiologic factors to be considered include malabsorption, opportunistic cancers or infections, underlying viral infections (CMV, Epstein-Barr, herpes simplex virus), the unrelenting wasting syndrome, and complications due to CNS disease or noncompliance.
Altarad Mucous Membranes Probable
Cause
Oral candidiasis
Other common causes of impaired membranes Kaposi’s sarcoma Herpes virus Inadequate mouth care
Special
Features
Nursing
The development of oral candidiasis in the asymptomatic, HIV-infected patient signifies progression of illness. The development of esophageal candidiasis establishes an AIDS diagnosis.
(Continued
on following
page)
Interventions
Normal saline mouth rinses, Vitamin A & D ointment* to lips, Avoid oral agents that are drying, is. that contain alcohol, hydrogen peroxide, providone-iodine. Use oral irrigation and suction if unable to adequately rinse mouth. Administer prescribed oral or systemic antifungal, antiviral, or analgesic medications, Use oral powder sprays to mildly debride end stimulate circulation if necessary. Use rigid oral suction catheter if having difficulty swallowing.
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296 Table 2. AIDSAuociatad Moderate to Severe Diarrhea Probable Cause Infections
Symptoms and Nunlng Intarvantlons
[Cont’d)
Special Features
Nursing Interventions
Despite aggressive use of antidiarrheals, diarrhea can be unrelenting. Clinical trials of various diarrhea1 agents are under way.
Assist in aggressive workup for causative agents. Contain diarrhea. Use panty liners, sanitary napkins, adult diapers, ostomy equipment, soft rectal tube, or bed with chamber pot opening (‘cholera’ bed), depending on severity. Consult with physician before using rectal tube. Institute caloric and volume intake and volume output investigation. Instruct to cleanse, rinse, and dry perirectal area after bowel movements. Protect perianal skin integrity using Vitamin A 81 D ointment, Skin Prep,* and other skin barriers. Avoid using Stomadhesive-like* barriers. Reinstruct patient to avoid anal sexual practices. Avoid orthostatic hypotension-related syncope.
Other common causes of diarrhea Malabsorption Kaposi’s sarcoma
Impaired Skin Integrity Many symptoms may be associated with this diagnosis. They include pruritis, lesions, dryness, rash, skin braskdown with decubitus ulcer formation, wounds, impetigo, psoriasis, xerosis, folliculitis, vasculitis, dermatitis. Etiologic factors to be considered include HIV, HIV-seroconvarsion-associated illness, drug reactions, and infections, ie, candidiasis, vsricella roster, molluscum contagiosum, staphylococcus, syphilis, herpes simplex virus, and malignancies. Ulcerative KS Laslons Nursing Interventions Specie1 Features Probable Cause Terminal-stsge illness of AIDS/KS
Lesions are unsightly. Healing of wound is not a realistic goal.
/Continued on following page)
Inform patient to discontinue using makeup to hide KS lesions once they open. Cleanse nondraining, noninfected open lesions. Cover lightly or leave open to air and light. Cleanse open, draining, infected lesions with potassium permangsnate soaks followed by normal saline rinse dsily. Providone-iodine foam with hydrogen perioxide can be used in place of potassium permangsnate. If maladorous, use air purifier, air freshener, spirits of peppermint, activated charcoal, vinegar, bsking sods, or hospital trash odor-control agent depending on severity. Use strips of iodoform nugaure to pack deep wounds. Use Karlix* to avoid tape contact with skin. Maintain wound and skin precautions. Simplify dressing technique as much as possible and teach skill to patient or care partner. Consult with dermatologist about other measures used.
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Tabia 2. AIDS-Associated Symptoms and Nursing interventions
(Cont’dl
Avoid the use of occlusive barrier dressings, ie, Stomadhesive that depend on mature neutrophiis to clear infection. Pruritis Probable
Special
Cause
Infections and underlying advanced disease
systemic,
Complaints
of pruritis
Nursing
Features often have to be
solicited.
Interventions
Inform patient that scratching enhances itching. It also leads to escoriated skin with a resultant medium for infection. Question patient about the development of pruritis since it may be a symptom of underlying infection, drug reaction, or disease. Promote hydration, frequent use of emollient creams, ie, Nivea,* Eucerin,* tepid water in bathing, and a mild soap, ie, Dove.* Add oil to bath water toward the end of bathing or to moist skin after a shower, ie, Aveeno.* Provide humidified air. Use distraction, relaxation, guided imagery, music at night when pruritis usually worsens. Aggressively assist in the treatment of underlying disease to lessen pruritis. Administer antihistimines, antibiotics, or corticosteroids as prescribed
Body Image Disturbance; impaired Social interaction Many symptoms may be associated with these diagnoses. They may include social isolation, social withdrawal, fearfulness, and body image changes. Etiologic factors to be considered include anxiety, discrimination, stigmatization, generalized weakness, HIV transmission, visible signs of illness, and reaction of family, friends, or society in general.
Body image Changes Common KS lesions Premature Substantial
aging weight
Causes
loss
Special
Nursing
Features
Be sensitive to age of patient. May be helpful to compare “before” and “after” photographs in order to grasp amount of change.
Provide
psychosocial
Interventions and spiritual
support. Discuss the handling of uncomfortable social situations, questions from acquaintances, and stares. Facilitate the use of makeup cover for KS lesions, if desired. Promote the wearing of loosely fitted clothing, turtlenecks, long sleeves, caps, and other camouflaging means, if desired. Attune yourself to patient’s grieving process and feelings of loss.
Decreased Booiaiization Common
Causes
Fear of transmission Feelings of uncleanliness Stigmatization Rejection of others Continued substance abuse
Special
Nursing
Features
Behavior change in these areas is difficult to attain and maintain. Group and social network support is advantageous to maintenance of behavior change. Education and reinforcement must be ongoing. (Continued
on following
page)
Interventions
Reinforce safer sex and drug use teaching. Discuss with patient and loved ones specifics of body substance isolation. Advocate pregnancy avoidance. Refer patient’s contacts for HIV testing and counseling.
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McMAHON AND COYNE Table 2. AIDS-Associated Symptoms and Nursing intrrvantions Health care professionals often need professional supervision in these areas due to low knowledge base, cultural insensitivity, and countertransferance issues.
(Cont’d) Promote the participation in HIV/AIDS support groups. initiate such a group if needed. Encourage maintenance of predisease activities, routine, schedule, network, if feasible. Confront and guide patient to drug treatment service as needed. Refer to a 12-step “anonymous” program Familiarize patient with local AIDSadvocacy group, governmental departments on discrimination, other community services. Form multidisciplinary team to meet patients’ and loved ones’ needs.
*Gancyclovir, Burroughs Wellcome, Research Triangle Park, NC; A & D Ointment, Fougera & Company, Melville, NY; Skin Prep, United, Largo, FL; Stomadhesive, A. Squibb Co, Princeton, NJ; Kerlix, Johnson &Johnson, New Brunswick, NJ; Nivea, Beiersdorf, Inc, Norwalk, CT; Eucerin, Beiersdorf; Dove, Lever Brothers Co, New York, NY; Aveeno, Rydelle Laboratories, Inc, Racine, WI.
conversations or television programs. Other early symptoms may be incoordination or poor balance and social withdrawaL21 As dementia progresses, the patient may become totally dependentfor activities of daily living [refer to article by Hall and colleagueselsewherein this issue]. Case study: ALX. F.I. was a 3dyear-old man admitted for his first episode of PCP. He had tripped slightly while walking into the hospital room and appearedsomewhatdepressed.In his nursing history he did not raise issues about cognitive, motor, or behavioral impairments. Later, his friends describeda newly developed social isolation and unwillingness to play bridge. F.I. confided to his nursethat he couldn’t count cardsany longer or follow the game. Following a neurological history and examination, a battery of neuropsychological tests and a medical workup to rule out other causesof impairment, ADC was diagnosed.
This type of debilitating dementiaof viral origin is rarely seenin cancerpatients. They may develop CNS cancersor delirium but there is no ADC-like syndrome (see Table 2 for symptom management17’19921-24). Nurses need to be aware that agitated or delirious patients, particularly those with dementia, may exhibit more side effects, ie, extrapyramidal reactions when taking a high-potency neuroleptic than other patients do.2s Included in the workup for ADC is a battery of tests foreign to oncology nurses. These neuropsychiatric tests are able to detect deficits that are not sensitive to the mini-mental statusexam. They in-
clude verbal fluency, trail making “A,” trail making “B,” digit-symbol substitution, finger tapping with dominant and nondominant hands, and a timed gait test.26Thesetests are also used in ADC natural history research studies and therapeutic drug trials. They may become indicators for early detection. Hopefully, AZT will substantially help AIDS patients with dementia regain some of their lost faculties. Data available from a placebo-controlled AZT trial for patients with AIDS-related complex and AIDS showed that there is a reversible component.” Cognitive improvements have been demonstrated.Ongoing studies are in place evaluating long-term improvement. Ineffective Breathing Patterns Pneumocystis carinii pneumonia accounts for
the frequency of respiratory symptoms in AIDS patients. Other factors may include recurrent bacterial pneumonias, valvular disease due to subacute bacterial endocarditis, CMV pneumonia, or Kaposi’s sarcoma(KS) lesions in the lungs. Fever and a nonproductive cough are, generally, the presenting symptoms. Once therapy is initiated, signs and symptomsmay worsen in the first 5 days with gradual clearing after 7 days. Patients are now surviving multiple episodes of PCP-a situation unheard of 5 years ago.
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Altered Mucous Membranes
Studies report the mouth and its sentinel immunologic mechanisms may be the first to become defective and permit opportunistic diseasein association with HIV infection.28 Regular oral assessment and care is warranted.22This is illustrated by the prognostic significance of oral candidiasis, hairy leukoplakia, and orofacial herpes zoster for the onset of AIDS from lesser manifestations of HIV infection. The appearanceof these oral diseaseschangesthe major care needstoward preparation of the patient for overt AIDS (refer to Table 2). Moderate to Severe Diarrhea
Thirty to sixty percent of AIDS patients develop chronic diarrhea, which may or may not be attributable to the aboveetiologies. Someconditions are unique to AIDS such asvisceral Kaposi’s sarcoma, chronic cryptosporidiosis or CMV colitis. Many are difficult to detect and, at present, refractory to treatment. Diarrhea can be intractable despite a thorough workup of causative agents and aggressiveuse of antidiarrheals. The problem can be intermittent or may be a debilitating one associatedwith dehydration, electrolyte imbalances, and emaciation. Embarrassmentand frustration can ensue. Interventions17such as the protection of perirectal skin integrity, nutritional consultation, and a lowresidue, high-protein, high-calorie diet are initiated (see Table 2). Ulcerative Kaposi’s Sarcoma Lesions
At stages of advanced disease, Kaposi’s sarcoma patients have developedsevere,deep, ulcerative, suprainfected, odoriferous, draining KS lesions of the lower extremities. Realistically, healing of these wounds is not the primary goal. Prevention of suprainfection, diminishing of odor, and containment of drainage are paramount. Unusual infections, eg, infestation with maggots, have been observed. Pruritis
Patientsdevelop a wide variety of cutaneousabnormalities. For reasonsnot yet understood, HIVinfected patients also develop cutaneousdrug reactions more frequently than other patients. Up to 60% of AIDS patients react to sulfonamides used
in treating Pneumocystis pneumonia.29Skin reactions include bacterial, viral, protozoal, or fungal dermatologic lesions. Abscessesmay form. Malignancies also threaten skin integrity, ie, Kaposi’s sarcoma, lymphoma, squamous cell carcinoma. Pruritis is a chronic, distressing syndrome for many patients3’ (refer to Table 2 for nursing care). Body image Disturbance and Impaired Social Interaction
AIDS patients suffer many affronts to their body image. Often these have social consequences.Apparent KS lesions on face, neck, arms, and thighs signal the diseaseto observers. Premature aging, alopecia, wasting syndrome, weight loss, edema due to an obstructedlymphatic system, and generalized weakness can all negatively affect one’s body image. Chronically ill patients with a variety of diseases need to make adjustmentsin their habits and roles to successfully live with their disease.These may include the breadwinner status, pregnancy prevention, job changes, and exploration of various sexual love expressionsto avoid overexertion, among others. In AIDS, these adjustmentsalso hinge on the fact that these changesare also beholden upon the individual becausethe illness is transmittable (ie, sexual partners, children, drug-using partners, transfusion recipients, organ recipients, and health care workers exposedto their blood or body fluid). These adaptationsare profound and raise multiple issues of loss, change, bereavement, self-esteem, expression of love, mortality, discrimination, and anger, among others.3’ Some cancer patients continue to endure discrimination and to raise fear in others. In AIDS this is almost universal.32SeeTable 2 for guides to nursing strategiesin this realm. CONCLUSION
The underlying principle in symptom management is to treat the underlying disease. Because AIDS patients do not have beneficial chemotherapies to eradicate the HIV infection, this primary mechanism to reduce symptomatology cannot be relied upon. Increased emphasis is placed on reducing symptoms through nursing interventions throughout the entire spectrum of HIV disease. Life style and pre-HIV conditions affect the course, management,and ability to perform selfcare measuresin symptom control. In AIDS, nurs-
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ing interventions that address intravenous drug abuse, alcoholism, homelessness,sexuality, and family dynamics will impact on symptommanagement and compliance. AIDS patients are routinely 20 to 40 years old; they have preexisting health conditions such as sexually transmitted diseases, hepatitis B, or substanceabuse; and they are frequently estrangedfrom their family of origin, religious institution, and community in general. Access to affordable quality health care is problematic with an underlying mistrust or avoidance of health care providers.
This article has explored the nature of symptoms AIDS patients develop, the distress they cause, and the nursing managementinvolved. The time and effort oncology nurses invest in symptom managementwill positively influence quality of life, feelings of well-being, and the positive energy neededfor living life. ACKNOWLEDGMENT The authorsgratefully acknowledgeIsabelle Marzec and Kay Baxter for manuscript preparation and James M. Casey for editorial reviews.
REFERENCES 1. Stalker MZ, Mazzola Lewis P: (Unpublished manuscript). New York, NY, Memorial Sloan-Kettering Cancer Center, 1983, 1985, 1988 2. Halloran J, Hughes A, Mayer DK: Oncology nursing society position paper on HIV-related issues.Oncol Nurs Forum 15:206-217, 1988 3. Bennett JA: Nursestalk about the challengeof AIDS. Am J Nurs 87:1150-1155, 1987 4. Centersfor DiseaseControl: Classification systemfor human T-lymphotropic virus type III/lymphadenopathyassociatedvirus infections. MMWR 35:334-339, 1986 5. Redfield R: The clinical, researchand public health applications of the Walter Reed staging classification of HIV infection. Third International Conference on AIDS. 1:8, 1987 (abstrM1l.l) 6. McMahon K, Sutterer MG: Safety precautions and hospital practices in dealing with seropositive individuals, in DeVita VT, Hellman S, Rosenberg SA (eds): AIDS: Etiology, Diagnosis, Treatment, andPrevention(ed 2). Philadelphia, PA, Lippincott, 1988, pp 397-420 7. Kovacs JA, Masur H: Opportunistic infections, in DeVita VT, Hellman S, RosenbergSA (eds): AIDS: Etiology, Diagnosis, Treatment, and Prevention(ed 2). Philadelphia, PA, Lippincott, 1988, pp 199-225 8. Current WL, Reese NC, Ernst JV, et al: Human cryptosporidiosis in immunocompetent and immunodeficient persons. N Engl J Med 308:1252-1257,1983 9. Ma P, Soave R: Three-step stool examination for cryptosporidiosisin 10homosexualmen with protractedwatery diarrhea. J Infect Dis 147:824-828,1983 10. Fuessl H, Heinlein H, Goebel FD: Treatment of persistent diarrhea in AIDS with somatostatinanalogue SMS 201995. Fourth International Conference on AIDS. 2409, 1988 (abstr 7 125) 11. Remington JS, Desmonts G: Toxoplasmosis, in Remington JS, Klein JO (eds): Infectious Diseasesof the Fetus and Newborn (ed 2). Philadelphia, PA, Saunders,1983, pp 143 12. Navia BA, Petit0 CK, Gold JWM, et al: Cerebral toxoplasmosiscomplicating the acquired immune deficiency syndrome: Clinical and neuropathologicalfindings in 27 patients. AM Neural 19:224-238, 1986 13. Wong B, Gold JWM, Brown AE, et al: Central-
nervous-systemtoxoplasmosis in homosexual men and parenteral drug abusers.Ann Intern Med 100:36-42, 1984 14. Haverkos HW: Assessmentof therapy for toxoplasma encephalitis. Am J Med 82:907-914, 1987 15. Bartlett JG, Laughon B, Quinn TC: Gastrointestinal complications of AIDS, in DeVita VT, Hellman S, Rosenberg SA (eds): AIDS: Etiology, Diagnosis, Treatment, and Prevention (ed 2). Philadelphia, PA, Lippincott, 1988, pp 227-244 16. Pomp A, Fisher A, Caldwell M, et al: Total parenteral nutrition (TPN) in patients with AIDS. Fourth International Conferenceon AIDS. 2:306, 1988 (abstr 7527) 17. HughesAM, Martin JP, FranksP: AIDS Home Care and Hospice Manual. San Francisco, AIDS Home Care and Hospice Program, VNA of San Francisco, 1987, pp 84-85 18. Nerenz DR, Levanthal H, Love RR: Factors contributing to emotional distressduring cancer chemotherapy. Cancer 50:1020-1027, 1982 19. Bennett J: Helping people with AIDS live well at home. Nurs Clin North Am 23:731-748, 1988 20. Brew B, RosenblumM, Price RW: Central and peripheral nervous systemcomplications of HIV infection and AIDS, in DeVita VT, Hellman S, Rosenberg SA (eds): AIDS: Etiology, Diagnosis, Treatment, and Prevention (ed 2). Philadelphia, PA, Lippincott, 1988, pp 185-197 21. MacIntyre R, Tueller B , Wishon SL: Nursing care plans for people with HIV infection, in Gee G, Moran TA (eds): AIDS: Conceptsin Nursing Practice. Baltimore, MD, Williams &Wilkins, 1988, pp 215-258 22. McDonnell M, SevedgeK: Acquired immune deficiency syndrome (AIDS), in Brown MH, Kiss ME, Outlaw EM, Viamontes CM (eds): Standardsof Oncology Nursing Practice. New York, NY, Wiley, 1986, pp 563-594 23. Martin JP: Sustaining care of persons with AIDS, in Durham JD, CohenFL (eds):The PersonWith AIDS-Nursing Perspectives.New York, NY, Springer, 1987, pp 161-177 24. Ungvarski PJ: Nursing managementof the adult client, in FlaskerudJH (ed): AIDS/HIV Infection-A ReferenceGuide for Nursing Professionals.Philadelphia, PA, Saunders, 1989, pp 74-110 25. Breitbart W, Marotta R, Call P: AIDS and neuroleptic malignancy syndrome. Lancet 2:1488-1489, 1988 26. Sidtis JJ, Amitai H, Omitz D, et al: The brief neuropsychological examination for AIDS dementia complex: Correla-
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tions with functional status scales and other neuropsychological tests. Third International Conference on AIDS. 155, 1987 (abstr T.5.1) 27. Schmitt FA, Bigley JW, McKinnis R, et al: Neuropsychological outcome of zidovudine (AZT) treatment of patients with AIDS and AIDS-related complex. N Engl J Med 319:1573-1578, 1988 28. Greenspan JS, the UCSF Oral AIDS Group: Oral lesions of HIV disease: Implications in pathogenesis, diagnosis and care. Fourth International Conference on AIDS. 2:3 18, 1988
ized lymphadenopathy, and AIDS-related complex, in DeVita VT, Hellman S, Rosenberg SA (eds): AIDS: Etiology, Dtagnosis, Treatment, and Prevention (ed 2). Philadelphia, PA, Lippincott, 1988, pp 107-120
(abstr 7574)
32. Report of The Presidential Commission on the Human Immunodeficiency Virus Epidemic. US Government Printing Office, Washington DC, 1988
29. Yarchoan R, Pluda JM: Clinical aspects of infection with AIDS retrovirus: Acute HIV infection, persistent general-
30. Dangel RB: Pruritis and cancer. Oncol Nurs Forum 13:17-21, 1986 31. McMahon K: The integration of HIV testing and counseling into nursing practice. Nurs Clin North Am 23:803-821, 1988
in Patients With AIDS and Noreen Coyne
N 1981 young homosexuals with unusual illnesseswere admitted to oncology units for diagnosis and treatment of problems that later became known as acquired immunodeficiency syndrome (AIDS). Oncology nurses applied their substantialknowledge, experience, and skill to this patient population. Transferring substantialexpertise regarding family care, symptom management, bereavement,care of the immunocompromisedpatient , nutrition, and sexuality, these oncology nurses contributed greatly to the care of patients with AIDS. Since the earliest days, cancer nurses have directed extensive care efforts and psychosocialsupport to thesepatients. In a 1983study performedat a comprehensive cancer center located in New York, it was found that AIDS patients required considerably more nursing care hours than the other oncology and bone marrow transplant patients on the medical units. Special emotional needs,intravenous (IV) care, isolation monitoring, and incontinence were indicated as causative factors.’ When this study was repeated in 1988, the findings indicated that nursing care hours neededby AIDS patients had decreased.Allotted care time toward special teaching and emotional needs had abated. This was attributed to several factors: a deliberate attempttoward early detection of psychosocial stressorsand identification of the at-risk population, community and extendedfamily intensive involvement in supportive and educative programs for AIDS/HIV patients, and the development of comfort and expertise in the oncology nursesthrough experiencewith many AIDS patients. The situation had changed from a crisis diseaseto a chronic diseasewith urgent-care episodes. However, nursing care hours can remain very high unless these factors are addressed. The Oncology Nursing Society position paper on HIV-related issues* states that cancer nurses have the responsibility to be involved at all levels in HIV-related education. Among the seven recommendations of this report, one is related to symptom management concerns: “Oncology nursesin particular are urged to assumeleadership roles in responding to the challengespresentedby HIV.“’ Oncology nurses have responded to the challenge in many HIV-related arenas.3
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SYMPTOM MANAGEMENT AND ONCOLOGY NURSING
Oncology nurses have targeted symptom managementas one of their major concerns. Countless articles regarding clinical care of the immunocompromised host in regard to infections, infection control, mouth care, bowel management, safety, sexuality, nutrition, knowledge deficits, and others have been written. Cancer nursing researchclearly addressesfatigue, nausea,impaired mucous membranes, and other issues that compound the magnitude of problems that AIDS patients encounter. But how can we distinguish between effective intervention with AIDS versuscancerpatients?What similarities and differences exist? Our primary objective is to explore the nature of symptomsAIDS patients experience, the resultant distress, and the nursing management involved. We hope to differentiate the nursing management strategiesfor responsesto AIDS versus responses to cancer. Our focus will be on the whole person becausefacets of men and women are not separable. Also, our fundamentalpremiseis that a person cannot be separatedfrom his or her environment. Environmental issues, ie, accessto care and legal statutes regarding confidentiality, and internal issues, ie, self-esteem,stresstolerance and history, and vulnerability all blend to affect how an individual with AIDS faces the symptoms of illness. SIMILARITIES AND DIFFERENCES
Staging System Presently, the two distinct classification systems for HIV infection are different from staging canFrom the Memorial Sloan-Kettering Cancer Center. New York, NY. Kathleen M. McMahon, RN, MEd, OCN: Nurse Clinician II-AIDS, Memorial Sloan-Kettering Cancer Center, Room M1935, New York, NY; Member, New York City .41DS Task Force; Noreen Coyne, RN, MS: Home Care Coordinator, Visiting Nurse Service of New York, Discharge Planning Department, MRI 1010, Memorial Sloan-Kettering Cancer Center, New York, NY; formerly, Visiting Nurse-in-Residence. Bailey House, New York, NY. Address reprint requests to Kathleen M. McMahon, RN, MEd, OCN. Memorial Sloan-Ketiering Cancer Center. Room M-1935, 1275 York Ave. New York, NY 10021, 01989 W.B. Saunders Company. 0749-208118910504-0010$05.00/0 289
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cer: cancer staging does not include precancerous conditions or risk factors and staging in diagnosis is specific to the type of cancer. A similarity is that accompanying markers such as immunologic parameters, presence of systemic symptoms (ie, B symptoms), or specific laboratory tests are included. The Centersfor DiseaseControl’s classification system4subdivides HIV infection into four groups: acute HIV infection, asymptomaticHIV infection, persistentgeneralizedlymphadenopathy,and other HIV disease.[Seethe article by Vlahov elsewhere in this issue.] This last group is subdivided into five subgroupsclarifying the manifestation of HIV infection. It is a useful clinical classification schemethat removes someof the confusion posed by earlier terms such as ARC (AIDS-related complex) . The other classification system is the Walter Reed Staging Classification for HIV Infection.’ This staging system clearly combines clinical and immunologic observationsand facilitates the identification of uniformity in patients. These systems are applicable because of the clearly identified etiology of HIV infection and AIDS. All manifestationsof diseaseare related to the destruction causedby the virus with subsequent patient signs and symptoms. Cancer, on the other hand, doesnot have one clearly identified etiologic agent. Because of this, a staging system with branchesidentifying the totality of the cancermanifestations is inconceivable. Infectivity Although the risk of becoming infected with HIV while managing the symptoms of an AIDS patient is extremely rare, it is not impossible.6 In cancer, nursesexpose themselvesto potential carcinogens, infectious agents, and radiation. However, the risk of acquiring a potentially fatal illness (HIV), heightens awarenessand anxiety regarding contact with blood and body fluids. Universal precautions have been initiated to reduce exposure. [See the article by Jacksonand Lynch, elsewhere in this issue, for a complete discussionof risks and precautions.1 ONCOLOGY NURSES’ CONTACT WITH AIDS-INDICATOR DISEASES
Some AIDS-related illnesses are also seen in cancer patients. These may include herpes zoster,
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cytomegalovirus (CMV) infections, Pneumocystis carinii pneumonia, oral candidiasis and nonHodgkin’s lymphoma. However, severity of disease,an aggressivenature, a poor responseto therapeutics (at times requiring lifetime treatments), and an unpredictable diseasecourse mark the separation. Some indicator diseasesin HIV infection are rarely found in cancer patients. The following is a review of some of these illnesses: Pneumocystiscarinii Pneumonia Pneumocystis carinii pneumonia (PCP) is the most common life-threatening opportunistic infection in HIV-infected patients. It is the initial manifestation of AIDS in 65% of HIV-infected patients, and it commonly reoccurs. Before the AIDS epidemic, PCP occurred in other patients who were immunocompromisedby hematologic malignancies, organ transplantation, prematurebirth, or immunosuppressivedrug regimens. Qualitatively, AIDS-related PCP differs significantly from lymphoma or steroid-related PCP.’ AIDS-PCP is a more indolent, subtle disease.Patients may experience a prolonged period of fatigue and weakness with fever, a nonproductive cough, decreasedexercise tolerance, chest tightness, and shortnessof breath. Rarely do AIDS patients present with acute, rapidly progressiverespiratory insufficiency leading to respiratory failure as noted to be PCP’s course in other immunocompromised patients. Thesenon-AIDS patients also respondwell to therapeuticsand experiencefew adverseeffects; in addition, relapse is uncommon. Early detection of PCP appearsto improve survival. Azidothymidine (AZT) therapy can reduce the severity and frequency of PCP but does not prevent it nor eliminate the associatedmorbidity and mortality. Diagnosis is routinely established via a transbronchial lavage and biopsy. Therapy with Bactrim (trimethoprim-sulfamethoxazole, Roche Laboratories, Nutley, NJ) or pentamidine is initiated, with most patients requiring hospitalization. A 3-week course of intravenous (IV) or oral Bactrim can be successful, yet, for reasons still unclear, many patients exhibit a high degree of sensitivity to Bactrim in the form of rashes,fever, and neutropenia. A 3-week course of IV pentamidine can also be successful, yet has common adverse effects in nephrotoxicity, hypoglycemia, de-
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layed-onset hyperglycemia, neutropenia, and pancreatitis.7 Prophylactic or suppressive therapy is of primary importance becauseof the frequency of relapse or reoccurrence. Some AIDS patients can tolerate the oral Bactrim regimen commonly used in cancertherapy. Aerosolized pentamidine shows promise as a well-tolerated and effective prophylactic treatment.
mosexuals. The diseasecan occur at any stage of HIV infection. About 50% of the patients present with pulmonary disease. Diagnosis is problematic because most patients are anergic when skin tested. Cultures of sputum or tissue biopsies, chest roentgenograms,and clinical evaluation establish the diagnosis. Mycobacterium tuberculosis readily respondsto the standardthree-drug regimen of isoniazid , rifampin , and ethambutol.
Cryptosporidium
Toxoplasma gondii
Cryptosporidium was not thought to infect humans. A human case of this veterinary protozoa1 pathogenwas first reportedin 1976.8Nearly 4% of AIDS patients have this illness. As more laboratories learn how to detect cryptosporidium, the diagnosis will increase.’ It causes a persistent, severe, watery diarrhea. It occurs in immunocompetentpeople, but the diarrhea is milder and self-limiting. ’ Medical therapy has been largely unsuccessful. Spiramycin has been useful in somepatients,7and other experimental therapies are being tried.” Other measuressuch as antidiarrheals, protection of surrounding intact skin and infection controlto prevent fecal/oral route transmission to other AIDS patients-are essential.
Toxoplasma gondii infections are asymptomatic in the immunocompetent person. Approximately 20% to 90% of healthy adults are infected. ‘I Its primary host is the cat. At least 3% of AIDS patients have T gondii, of which the majority of cases are due to reactivation of disease. Specific determinants of reactivation are unknown. 7 Clinically, focal encephalitis develops over weeks, and may include hemiparesis, seizures, severeand unremitting headaches,and sometimesfever. Diagnosis is made by brain biopsy. Other measures are not as reliable.7 Medical therapy of pyrimethamine plus sulfadiazine is started. No regimen has yet been proven by clinical trial to be effective. However, these drugs often improve symptoms and lesions on computed tomography scan.‘*-14Patients respond well, but treatment is frequently discontinued due to the rate (60%) of adversereactions.l4 These reactions (neutropenia, rash, and fever) increase the potential for additional problems in these already-at-risk patients. However, without treatment, relapse occurs
Mycobacterium Mycobacterium avium intracellulare (MAI) OCcurs frequently in AIDS patients. It has been isolated from at least 40% to 60% of patients before they die and is usually a disseminated disease.7 Although it is clearly identified, the signs and symptoms of MAI infection are vague. Many AIDS patients develop fever, diarrhea, weight loss, and lymphadenopathy that are not clinically explained. Although other pathogensare not identified, MAI is present.Treatmentfor MAI is begun while other pathogensare sought. Again, medical treatment has been largely unsuccessful. No clear regimen is outstanding in controlling this infection. Treatment with clofazimine, cyclosenine, ethionamide, amikacin, or ethambutol may be initiated.7 Other mycobacterial infections in AIDS patients are rare. The exception is Mycobacterium tuberculosis (TB) of which a rising rate appearsto be found amongHIV-infected drug abusers,the poor, or the homeless.Thesepeople, having an environmental predisposition, have higher rates than ho-
Cytomegalovirus
Although cytomegalovirus (CMV) infection is common and occurs in the cancer population, its manifestation asCMV retinitis doesnot. Cytomegalovirus causesmore than 95% of the retinochoroiditis casesseen.7HIV-infected patients with a severedepressionof their T, lymphocyte number usually complain of floaters, blurred vision, and decreased vision. Diagnosis, made clinically through a characteristic fundoscopic examination by an experiencedophthalmologist, discloses yellow-white exudate, hemorrhage,edema,vessel attenuation, and sheathing. The infection progresses at a variable rate to complete visual loss. Treatment with gancyclovir is effective but, as is customary in AIDS-related opportunistic infections, relapse is common after therapy is discontinued.
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Maintenance therapy may involve lifetime treatment. Becauseneutropenia often results, the difficult dilemma may need to be faced-whether to stop potentially life-saving therapy (AZT) or the potentially sight-saving therapy (gancyclovir). In time, it is hoped that medications such as granulocyte-macrophagecolony-stimulating factor may offset the need for this decision. Other agents(eg, foscarnate)and other routes (oral and intravitreol) are being studied. Wasting Syndrome (Slim’s Disease)
Not as commonin America as in Africa or Haiti, the unrelenting wasting syndrome is consideredto be AIDS in which the gastrointestinal manifestation predominates. I5 The syndrome comprises weight loss, intermittent, nonbloody diarrhea, anorexia, and marked change in taste. Currently, there are no clinical trials in which therapeutic antivirals or immune modulators are being tested. Megesterol acetateis presently in clinical trial for AIDS patients with anorexia and cachexia. Total parenteral nutrition can be safely administered to AIDS patients16;however, a limited study showed that most patients remain in a negative nitrogen balance reflecting a severe catabolic state. Total parenteral nutrition is also very costly. The symptom managementis comparableto that of patients with cancer cachexia syndrome: dietary manipulations, prevention of infection, maintenanceof skin integrity, and the bolstering of quality-of-life interventions. Malignancies
Oncology nurses are familiar with the diseases, pathophysiology, and treatment of the AIDS malignancies. The characteristics that distinguish these malignancies in the HIV-infected patient include abnormal sites at presentation, unusual pattern of spread, marked lack of lasting responseto routine chemotherapeutic agents, increased virulence, involvement of extranodal sites, and the presenceof concomitant HIV indicator diseases, ie, wasting syndrome, infections, dementia. THE NATURE OF THE SYMPTOMS
AIDS patients have numerous symptoms. The authors have observedmore than 70 symptoms in the various patients they have treated (see Table 1). Symptomshave beenselectedfor discussionby
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frequency, severity, and management strategies, vis a vis cancer patients. Many of the interventions for symptoms in AIDS parallel interventions used with symptoms associatedwith other illnesses. But, as previously stated, people with AIDS often experience other complications, ie, lifetime schedule of medications, adverseneutropenic reactions to vital drugs, illegal drug use, or estrangementfrom family of origin, which become related to their care. Also, one uncontrolled problem may aggravateanother, the cause of the symptom may be unknown, and standard medical interventions may be ineffective. ” Symptoms and their related emotional distress may lead patients to delay, reduce, or terminate treatment. Becausethese decisions can negatively impact on optimal treatment regimens, successful coping with symptomsis a priority nursing goal. In one study of cancerpatients’* the number of symptoms experienced, not the severity or the duration, was correlated with distress. Vague side effects such as fatigue were more distressing than specific, acute ones, and greater distress was associated with unsuccessful attempts to overcome the symptoms. REVIEW OF SYMPTOMS
Blindness/Decreased Visual Acuity
Decreased visual acuity may begin suddenly with agonizing consequences.Many patients dread its development. Becauseof a shortened life expectancy and other HIV conditions (generalized weakness,peripheral neuropathies, frequent hospitalizations), full rehabilitation is not a realistic goal. The use of a guide dog or proficiency at Braille may never be achieved. Nursing interventions” focus on the prevention of social isolation, optimal independence,and structuring of available supports (see Table 2). Dementia
Although HIV-infected personsmay experience multiple acute and subacutesyndromes related to central nervous system (CNS) manifestations of disease,the AIDS dementia complex (ADC) is the most clinically striking syndrome because of its cognitive, motor, and behavioral consequences.20 Initial symptoms are memory problems and concentration difficulties. Patients may complain of “slow thinking” and have difficulty following
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Table 1. Common HIV/AIDS-Related Symptoms Physical Anorexia Nausea Vomiting Candidiasis Oral warts Periodontitis Stomatitis Perirectal infections Moderate to severe weight loss Inability to sustain or gain weight Oral hairy leukoplakia Diarrhea: mild, moderate, severe Gingivitis Constipation Dysphagia Abdominal cramping Pruritis Lesions Skin breakdown Decubitus ulcer formation Abrasions Rash Wounds Impetigo Psoriasis Xerosis Folliculitis Vasculitis Dermatitis Premature aging Eruptions of infection Candida albicans, dermatophytosis, athlete’s foot, varicella zoster, molluscum contagiosum, furuncolosis, staphylococcus, syphilis, herpes simplex 1 or 2 Dyspnea, at rest or exertion Cough, productive Cough, nonproductive Bronchospasms Orthopnea Tachypnea Fever Night sweats Fatigue Lymphadenopathy Incontinence, urinary Incontinence, fecal Peripheral neuropathy Pain
Communication Dyslogia Expressive aphasia Delayed verbal responses Mutism
Relationships Social isolation Social withdrawal Resistance to change
due to possible
discrimination
In
changed environment Apathy Depression Agitation Psychosis Paranoia Loss of job Loss of home Strained personal relationships Continued substance abuse or alcoholism Financial insecurity Concern over increasing dependency state Altered body image
Perception Memory loss Headache Blindness Decreased visual acuity Obtundation Dementia Confusion Weakness Impaired insight or judgement Forgetfulness Altered sleep-wake patterns Hallucinations Impaired concentration Vacant stare Hearing loss Fears of alienating care providers
Mobility Hemiparesis Paralysis Tremor Myoclonus Loss of coordination Impaired handwriting Leg weakness Spasticity Hypet-flexia Gait ataxia Failure to thrive
Emotion Bereavement Fear of dementia,
dependency,
abandonment,
blindness
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294 Table 2. AIDS-Associated Symptoms and Nursing Interventions
Sensory-Perceptual Alterations Many symptoms may be associated with this nursing diagnosis. They include impaired memory, “slowed” thinking, impaired concentration, dementia, headache, obtundation, confusion, lethargy, impaired vision, blindness, peripheral neuropathy, social isolation, social withdrawal, forgetfulness, or confusion. Etiologic factors to be considered include opportunistic CNS malignancies and infections, HIV infection of the CNS or peripheral nervous system, site-specific opportunistic infection such as CMV retinitis or herpes roster, the adverse effects of medications, fluid and electrolyte imbalances, metabolic and vascular disruptions, social ostracism, and discrimination. Blindness/Decreased Visual Acuity Nursing Interventions Special Features Probable Cause CMV retinitis
Rare causes of visual disturbances Toxoplasma Cryptococcus
gondii neoformans
MycobactarieIfungi
May develop suddenly Antiviral intervention should be started as soon as possible to prevent extension of visual loss. Many patients cannot remain on Gancyclovir* due to neutropenia. Other antiviral agents, ie, foscarnet, are in clinical trials (l-gOO-TRIALS A). Many patients dread the development of blindness. Full rehabilitation is frequently not a realistic goal. The use of a guide dog or proficiency at Braille may never be achieved. Medical treatment is life-long.
Instruct on symptoms Ensure prompt ophthalmic consultation upon development of initial symptoms. Provide psychosocial and spiritual support. Combat social isolation and withdrawal. Focus on anxiety and frustration management. Arrange for outpatient or home care infusion therapy. Teach administration of IV therapy. Activate referrals as appropriate to: blind organizations for the blind; ie, association for the blind occupational retraining programs, home care agencies, meals on wheels, mental health professionals. Promote assistive devices: Talking clocks Cane, traveling with a sighted person Tactile identification markers Teach measures enhancing independence and safety: Fire prevention and response Hygiene and grooming Meal preparation Communication Transportation Housekeeping and laundry
Drmrntla Probable Cause HIV
Other causes in a differential diagnosis CNS malignancy CNS infection Metabolic complications Cerebrovascular complications Adverse effects of medications
Special Features
Nursing Interventions
ADC comprises cognitive, motor, and behavioral symptoms. Many patients and care partners dread the development of dementia. Diagnosis may be difficult to establish. It involves a thorough assessment. The vast majority of AIDS patients have some evidence of early-stage dementia. ADC patients’ symptoms can wax and wane. Progression ensues at a variable rate.
Assist with neuropsychiatric assessment and medical evaluation. Provide support, guidance for families/friends. Refer for home care, “buddy” volunteer, day-care residential living, or respite care as appropriate. Refer to American Red Cross for home care training program, transportation. Assess need for medication. Administer and supervise, ie, haloperidol, lorarepam as prescribed. Promote timed drug dosage, pillbox alarms, checklists. Obtain physical therapy consult for gait training with assistive devices.
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Table 2. AIDS-Associatad Symptoms and Nursing Intwventions
(Cont’d)
Use reminder devices: telephone calls, appointment book, ‘to do’ lists, checklists, maps of food store. Advocate antiviral research therapy as appropriate. Model interactive techniquesSimplify communications and logistics.
Inaffactivo Braathing Patterns Many symptoms may be associated with this nursing diagnosis. The most common are the constellation of signs and symptoms that patients who are developing PCP demonstrate. They include a fever with a dry, nonproductive cough, chills. exercise intolerance, and dyspnea. There are other etiologic agents that cause altered breathing patterns in patients with AIDS. The symptoms include productive coughs, wheezing, and dyspnee. These other underlying concerns include bacterial endocarditis with resulting valvular disease, congestive heart failure, CMV pneumonia, KS lesions in the main lung structures, pleural effusion, pneumothoraxes, recurrent bacterial respiratory infections, or tuberculosis. Cough Nursing Interventions Probable Cause Special Features PCP
Other common causes of cough: Bacterial, mycobacterial, or CMV pneumonia KS lesions in the lungs Pneumothorax
Those HIV-infected patients whose T-cell count is <400/mm3 are most at risk for PCP. Symptoms may worsen during first days of treatment for PCP. Bactrim and aerosolired pentamidine treatments are used to prevent PCP episodes.
Instruct AIDS patients on initial symptoms and signs of PCP. Instruct patient on PCP prophylactic therapy. Ensure compliance. Encourage patient to seek urgent treatment at the initiation of symptoms of PCP. Assist in diagnostic workup, ie, sputuminduction cultures, bronchoscopy. Administer Bactrim, pentamidine, dapsone, fansidar, solumedrol, or other experimental agent as ordered for PCP. Provide distraction, socialization, clean environment for prolonged hospitalization.
Potential Fluid Volume Deficit; Impaired Tissue Integrity Many symptoms may be associated with these diagnoses. They include anorexia, nausea, vomiting, candidiasis, oral warts, weight loss, perirectal infections, inability to sustain or gain weight, oral hairy leukoplakia, diarrhea, stomatitis, gingivitis, and marked change in taste. Etiologic factors to be considered include malabsorption, opportunistic cancers or infections, underlying viral infections (CMV, Epstein-Barr, herpes simplex virus), the unrelenting wasting syndrome, and complications due to CNS disease or noncompliance.
Altarad Mucous Membranes Probable
Cause
Oral candidiasis
Other common causes of impaired membranes Kaposi’s sarcoma Herpes virus Inadequate mouth care
Special
Features
Nursing
The development of oral candidiasis in the asymptomatic, HIV-infected patient signifies progression of illness. The development of esophageal candidiasis establishes an AIDS diagnosis.
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page)
Interventions
Normal saline mouth rinses, Vitamin A & D ointment* to lips, Avoid oral agents that are drying, is. that contain alcohol, hydrogen peroxide, providone-iodine. Use oral irrigation and suction if unable to adequately rinse mouth. Administer prescribed oral or systemic antifungal, antiviral, or analgesic medications, Use oral powder sprays to mildly debride end stimulate circulation if necessary. Use rigid oral suction catheter if having difficulty swallowing.
McMAHON AND COYNE
296 Table 2. AIDSAuociatad Moderate to Severe Diarrhea Probable Cause Infections
Symptoms and Nunlng Intarvantlons
[Cont’d)
Special Features
Nursing Interventions
Despite aggressive use of antidiarrheals, diarrhea can be unrelenting. Clinical trials of various diarrhea1 agents are under way.
Assist in aggressive workup for causative agents. Contain diarrhea. Use panty liners, sanitary napkins, adult diapers, ostomy equipment, soft rectal tube, or bed with chamber pot opening (‘cholera’ bed), depending on severity. Consult with physician before using rectal tube. Institute caloric and volume intake and volume output investigation. Instruct to cleanse, rinse, and dry perirectal area after bowel movements. Protect perianal skin integrity using Vitamin A 81 D ointment, Skin Prep,* and other skin barriers. Avoid using Stomadhesive-like* barriers. Reinstruct patient to avoid anal sexual practices. Avoid orthostatic hypotension-related syncope.
Other common causes of diarrhea Malabsorption Kaposi’s sarcoma
Impaired Skin Integrity Many symptoms may be associated with this diagnosis. They include pruritis, lesions, dryness, rash, skin braskdown with decubitus ulcer formation, wounds, impetigo, psoriasis, xerosis, folliculitis, vasculitis, dermatitis. Etiologic factors to be considered include HIV, HIV-seroconvarsion-associated illness, drug reactions, and infections, ie, candidiasis, vsricella roster, molluscum contagiosum, staphylococcus, syphilis, herpes simplex virus, and malignancies. Ulcerative KS Laslons Nursing Interventions Specie1 Features Probable Cause Terminal-stsge illness of AIDS/KS
Lesions are unsightly. Healing of wound is not a realistic goal.
/Continued on following page)
Inform patient to discontinue using makeup to hide KS lesions once they open. Cleanse nondraining, noninfected open lesions. Cover lightly or leave open to air and light. Cleanse open, draining, infected lesions with potassium permangsnate soaks followed by normal saline rinse dsily. Providone-iodine foam with hydrogen perioxide can be used in place of potassium permangsnate. If maladorous, use air purifier, air freshener, spirits of peppermint, activated charcoal, vinegar, bsking sods, or hospital trash odor-control agent depending on severity. Use strips of iodoform nugaure to pack deep wounds. Use Karlix* to avoid tape contact with skin. Maintain wound and skin precautions. Simplify dressing technique as much as possible and teach skill to patient or care partner. Consult with dermatologist about other measures used.
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WITH AIDS
Tabia 2. AIDS-Associated Symptoms and Nursing interventions
(Cont’dl
Avoid the use of occlusive barrier dressings, ie, Stomadhesive that depend on mature neutrophiis to clear infection. Pruritis Probable
Special
Cause
Infections and underlying advanced disease
systemic,
Complaints
of pruritis
Nursing
Features often have to be
solicited.
Interventions
Inform patient that scratching enhances itching. It also leads to escoriated skin with a resultant medium for infection. Question patient about the development of pruritis since it may be a symptom of underlying infection, drug reaction, or disease. Promote hydration, frequent use of emollient creams, ie, Nivea,* Eucerin,* tepid water in bathing, and a mild soap, ie, Dove.* Add oil to bath water toward the end of bathing or to moist skin after a shower, ie, Aveeno.* Provide humidified air. Use distraction, relaxation, guided imagery, music at night when pruritis usually worsens. Aggressively assist in the treatment of underlying disease to lessen pruritis. Administer antihistimines, antibiotics, or corticosteroids as prescribed
Body Image Disturbance; impaired Social interaction Many symptoms may be associated with these diagnoses. They may include social isolation, social withdrawal, fearfulness, and body image changes. Etiologic factors to be considered include anxiety, discrimination, stigmatization, generalized weakness, HIV transmission, visible signs of illness, and reaction of family, friends, or society in general.
Body image Changes Common KS lesions Premature Substantial
aging weight
Causes
loss
Special
Nursing
Features
Be sensitive to age of patient. May be helpful to compare “before” and “after” photographs in order to grasp amount of change.
Provide
psychosocial
Interventions and spiritual
support. Discuss the handling of uncomfortable social situations, questions from acquaintances, and stares. Facilitate the use of makeup cover for KS lesions, if desired. Promote the wearing of loosely fitted clothing, turtlenecks, long sleeves, caps, and other camouflaging means, if desired. Attune yourself to patient’s grieving process and feelings of loss.
Decreased Booiaiization Common
Causes
Fear of transmission Feelings of uncleanliness Stigmatization Rejection of others Continued substance abuse
Special
Nursing
Features
Behavior change in these areas is difficult to attain and maintain. Group and social network support is advantageous to maintenance of behavior change. Education and reinforcement must be ongoing. (Continued
on following
page)
Interventions
Reinforce safer sex and drug use teaching. Discuss with patient and loved ones specifics of body substance isolation. Advocate pregnancy avoidance. Refer patient’s contacts for HIV testing and counseling.
299
McMAHON AND COYNE Table 2. AIDS-Associated Symptoms and Nursing intrrvantions Health care professionals often need professional supervision in these areas due to low knowledge base, cultural insensitivity, and countertransferance issues.
(Cont’d) Promote the participation in HIV/AIDS support groups. initiate such a group if needed. Encourage maintenance of predisease activities, routine, schedule, network, if feasible. Confront and guide patient to drug treatment service as needed. Refer to a 12-step “anonymous” program Familiarize patient with local AIDSadvocacy group, governmental departments on discrimination, other community services. Form multidisciplinary team to meet patients’ and loved ones’ needs.
*Gancyclovir, Burroughs Wellcome, Research Triangle Park, NC; A & D Ointment, Fougera & Company, Melville, NY; Skin Prep, United, Largo, FL; Stomadhesive, A. Squibb Co, Princeton, NJ; Kerlix, Johnson &Johnson, New Brunswick, NJ; Nivea, Beiersdorf, Inc, Norwalk, CT; Eucerin, Beiersdorf; Dove, Lever Brothers Co, New York, NY; Aveeno, Rydelle Laboratories, Inc, Racine, WI.
conversations or television programs. Other early symptoms may be incoordination or poor balance and social withdrawaL21 As dementia progresses, the patient may become totally dependentfor activities of daily living [refer to article by Hall and colleagueselsewherein this issue]. Case study: ALX. F.I. was a 3dyear-old man admitted for his first episode of PCP. He had tripped slightly while walking into the hospital room and appearedsomewhatdepressed.In his nursing history he did not raise issues about cognitive, motor, or behavioral impairments. Later, his friends describeda newly developed social isolation and unwillingness to play bridge. F.I. confided to his nursethat he couldn’t count cardsany longer or follow the game. Following a neurological history and examination, a battery of neuropsychological tests and a medical workup to rule out other causesof impairment, ADC was diagnosed.
This type of debilitating dementiaof viral origin is rarely seenin cancerpatients. They may develop CNS cancersor delirium but there is no ADC-like syndrome (see Table 2 for symptom management17’19921-24). Nurses need to be aware that agitated or delirious patients, particularly those with dementia, may exhibit more side effects, ie, extrapyramidal reactions when taking a high-potency neuroleptic than other patients do.2s Included in the workup for ADC is a battery of tests foreign to oncology nurses. These neuropsychiatric tests are able to detect deficits that are not sensitive to the mini-mental statusexam. They in-
clude verbal fluency, trail making “A,” trail making “B,” digit-symbol substitution, finger tapping with dominant and nondominant hands, and a timed gait test.26Thesetests are also used in ADC natural history research studies and therapeutic drug trials. They may become indicators for early detection. Hopefully, AZT will substantially help AIDS patients with dementia regain some of their lost faculties. Data available from a placebo-controlled AZT trial for patients with AIDS-related complex and AIDS showed that there is a reversible component.” Cognitive improvements have been demonstrated.Ongoing studies are in place evaluating long-term improvement. Ineffective Breathing Patterns Pneumocystis carinii pneumonia accounts for
the frequency of respiratory symptoms in AIDS patients. Other factors may include recurrent bacterial pneumonias, valvular disease due to subacute bacterial endocarditis, CMV pneumonia, or Kaposi’s sarcoma(KS) lesions in the lungs. Fever and a nonproductive cough are, generally, the presenting symptoms. Once therapy is initiated, signs and symptomsmay worsen in the first 5 days with gradual clearing after 7 days. Patients are now surviving multiple episodes of PCP-a situation unheard of 5 years ago.
299
SYMPTOM MANAGEMENT IN PATIENTS WITH AIDS
Altered Mucous Membranes
Studies report the mouth and its sentinel immunologic mechanisms may be the first to become defective and permit opportunistic diseasein association with HIV infection.28 Regular oral assessment and care is warranted.22This is illustrated by the prognostic significance of oral candidiasis, hairy leukoplakia, and orofacial herpes zoster for the onset of AIDS from lesser manifestations of HIV infection. The appearanceof these oral diseaseschangesthe major care needstoward preparation of the patient for overt AIDS (refer to Table 2). Moderate to Severe Diarrhea
Thirty to sixty percent of AIDS patients develop chronic diarrhea, which may or may not be attributable to the aboveetiologies. Someconditions are unique to AIDS such asvisceral Kaposi’s sarcoma, chronic cryptosporidiosis or CMV colitis. Many are difficult to detect and, at present, refractory to treatment. Diarrhea can be intractable despite a thorough workup of causative agents and aggressiveuse of antidiarrheals. The problem can be intermittent or may be a debilitating one associatedwith dehydration, electrolyte imbalances, and emaciation. Embarrassmentand frustration can ensue. Interventions17such as the protection of perirectal skin integrity, nutritional consultation, and a lowresidue, high-protein, high-calorie diet are initiated (see Table 2). Ulcerative Kaposi’s Sarcoma Lesions
At stages of advanced disease, Kaposi’s sarcoma patients have developedsevere,deep, ulcerative, suprainfected, odoriferous, draining KS lesions of the lower extremities. Realistically, healing of these wounds is not the primary goal. Prevention of suprainfection, diminishing of odor, and containment of drainage are paramount. Unusual infections, eg, infestation with maggots, have been observed. Pruritis
Patientsdevelop a wide variety of cutaneousabnormalities. For reasonsnot yet understood, HIVinfected patients also develop cutaneousdrug reactions more frequently than other patients. Up to 60% of AIDS patients react to sulfonamides used
in treating Pneumocystis pneumonia.29Skin reactions include bacterial, viral, protozoal, or fungal dermatologic lesions. Abscessesmay form. Malignancies also threaten skin integrity, ie, Kaposi’s sarcoma, lymphoma, squamous cell carcinoma. Pruritis is a chronic, distressing syndrome for many patients3’ (refer to Table 2 for nursing care). Body image Disturbance and Impaired Social Interaction
AIDS patients suffer many affronts to their body image. Often these have social consequences.Apparent KS lesions on face, neck, arms, and thighs signal the diseaseto observers. Premature aging, alopecia, wasting syndrome, weight loss, edema due to an obstructedlymphatic system, and generalized weakness can all negatively affect one’s body image. Chronically ill patients with a variety of diseases need to make adjustmentsin their habits and roles to successfully live with their disease.These may include the breadwinner status, pregnancy prevention, job changes, and exploration of various sexual love expressionsto avoid overexertion, among others. In AIDS, these adjustmentsalso hinge on the fact that these changesare also beholden upon the individual becausethe illness is transmittable (ie, sexual partners, children, drug-using partners, transfusion recipients, organ recipients, and health care workers exposedto their blood or body fluid). These adaptationsare profound and raise multiple issues of loss, change, bereavement, self-esteem, expression of love, mortality, discrimination, and anger, among others.3’ Some cancer patients continue to endure discrimination and to raise fear in others. In AIDS this is almost universal.32SeeTable 2 for guides to nursing strategiesin this realm. CONCLUSION
The underlying principle in symptom management is to treat the underlying disease. Because AIDS patients do not have beneficial chemotherapies to eradicate the HIV infection, this primary mechanism to reduce symptomatology cannot be relied upon. Increased emphasis is placed on reducing symptoms through nursing interventions throughout the entire spectrum of HIV disease. Life style and pre-HIV conditions affect the course, management,and ability to perform selfcare measuresin symptom control. In AIDS, nurs-
300
McMAHON AND COYNE
ing interventions that address intravenous drug abuse, alcoholism, homelessness,sexuality, and family dynamics will impact on symptommanagement and compliance. AIDS patients are routinely 20 to 40 years old; they have preexisting health conditions such as sexually transmitted diseases, hepatitis B, or substanceabuse; and they are frequently estrangedfrom their family of origin, religious institution, and community in general. Access to affordable quality health care is problematic with an underlying mistrust or avoidance of health care providers.
This article has explored the nature of symptoms AIDS patients develop, the distress they cause, and the nursing managementinvolved. The time and effort oncology nurses invest in symptom managementwill positively influence quality of life, feelings of well-being, and the positive energy neededfor living life. ACKNOWLEDGMENT The authorsgratefully acknowledgeIsabelle Marzec and Kay Baxter for manuscript preparation and James M. Casey for editorial reviews.
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