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The PRO-SELF© Mouth Aware program: An effective approach for reducing chemotherapy-induced mucositis

Larson, Patricia J. R.N., D.N.Sc., F.A.A.N.; Miaskowski, Christine R.N., Ph.D., F.A.A.N.; MacPhail, Laurie Ph.D., D.M.D.; Dodd, Marylin J. R.N., Ph.D., F.A.A.N.; Greenspan, Deborah D.Sc., B.D.S.; Dibble, Suzanne L. R.N., D.N.Sc.; Paul, Steven M. Ph.D.; Ignoffo, Robert Pharm.D.

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Many oncology patients receive chemotherapy drugs that have the potential to induce oral mucositis. If mucositis is not prevented, patients will have to manage the problems associated with mucositis: pain, local infection, and decreased ability to take fluids or food. At the time of this writing, clinical approaches for mucositis management are variable and generally ineffective. The mouth care program, PRO-SELF©: Mouth Aware (PSMA), presented in this article, was found to be a significant component of a self-care program that may have reduced the incidence of chemotherapy-induced mucositis. The PSMA program has three dimensions: (a) didactic information, (b) development of self-care exercises (skills), and (c) supportive interactions with a nurse in the setting where the patients are receiving their treatment. This program focuses on decreasing the direct (i.e., incidence and severity of mucositis) and indirect morbidities of oral mucositis (i.e., number of local infections, level of discomfort/pain, and disruption in fluid and/or food intake). It provides the critical dimensions (i.e., specific information, self-care exercises, and nurse support) to promote the prevention of mucositis. The PSMA program is designed to provide patients with a definitive self-care repertoire to manage chemotherapy-induced mucositis in the home without the direct supervision of a health care provider.

Patricia J. Larson is Associate Professor at the School of Nursing, University of California, San Francisco, California, U.S.A.

Christine Miaskowski is Professor at the School of Nursing, University of California, San Francisco, California, U.S.A.

Laurie MacPhail is Assistant Clinical Professor at the School of Dentistry, University of California, San Francisco, California, U.S.A.

Marylin J. Dodd is Professor at the School of Nursing, University of California, San Francisco, California, U.S.A.

Deborah Greenspan is Clinical Professor at the School of Dentistry, University of California, San Francisco, California, U.S.A.

Suzanne L. Dibble is Associate Adjunct Professor at the School of Nursing, University of California, San Francisco, California, U.S.A.

Steven M. Paul is Senior Statistician at the School of Nursing, University of California, San Francisco, California, U.S.A.

Robert Ignoffo is Clinical Professor at the School of Pharmacy, University of California, San Francisco, California, U.S.A.

Address correspondence and reprint requests to Christine Miaskowski, Department of Physiological Nursing, Box 0610, University of California, San Francisco, 3rd and Parnassus Avenues, San Francisco, CA 94143-0610, U.S.A.

Accepted for publication November 10, 1997.

At least 25% of the 400,000 oncology patients in the United States receiving cancer chemotherapy will receive a drug that has the potential to induce oral mucositis (1-5). If mucositis is not prevented, patients will need to manage the problems associated with mucositis: pain, local infection, and decreased ability to take food or fluids. These problems can be so pronounced that the patient's functional status may be compromised. Attempts to reduce the incidence and severity of chemotherapy-induced mucositis have involved the testing of systematic oral care protocols (6-10), the use of different mouthwashes (11-24), and the evaluation of different approaches aimed at preventing or treating infections associated with oral mucositis (18,19,24-26).

Unfortunately, no definitive approach for the effective prevention or management of mucositis has been demonstrated at the time of this writing. Likewise, current clinical approaches for mucositis management are variable and generally ineffective (27,28). Clinicians, especially in an outpatient setting, rarely initiate strategies to prevent mucositis. Patients are not taught, on a routine basis, how to care for their mouths or how to assess for the signs and symptoms of mucositis. Usually, only after mucositis develops is an attempt made to manage the problem, typically using a mouthwash solution. The mouthwashes chosen vary depending on personal or institutional preferences. None of the mouthwashes commonly used (e.g., salt and soda, hydrogen peroxide, saline, "magic mouthwashes") have been tested empirically.

Systemic agents, such as granulocyte-colony stimulating factors, have been found effective in reducing the severity and duration of chemotherapy-induced oral mucositis (29). However, the reality for the great majority of patients experiencing chemotherapy-induced mucositis is that these drugs are not prescribed routinely because of their cost and likelihood for potentiating other side effects such as fluid retention. Several reports suggest that good oral hygiene (i.e., brushing and flossing the teeth, frequent rinsing with water) may be beneficial in managing oral mucositis (6,30-33). However, the dilemma remains: How can mucositis be prevented by patients in the home or hospital in an efficient and cost-effective manner?

The mouth care program, PRO-SELF©: Mouth Aware (PSMA), presented in this article, was found to be a significant component of a self-care program that may have reduced the incidence of chemotherapy-induced mucositis (20). In a large-scale randomized control trial, we tested the effectiveness of two mouth washes (i.e., chlorhexidine compared with sterile water) used in conjunction with a nurse-taught, systematic oral hygiene program (i.e., the PSMA program) in preventing chemotherapy-induced oral mucositis. The more costly chlorhexidine was found to be no more effective than water in preventing mucositis. However, the use of the systematic oral care protocol may have resulted in reducing the incidence of mucositis from an a priori estimate of 44% to less than 26%. This finding suggests that the reduction may be due to the PSMA program itself. This article will provide detailed information on the development and content of the PSMA program that can be used by nurses in a variety of practice settings.

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BACKGROUND

Chemotherapy-Induced Mucositis

Chemotherapy agents most likely to cause mucositis include cisplatin, cytarabine, doxorubicin, bleomycin, etoposide, 5-fluorouracil (5-FU), mercaptopurine, and methotrexate. Mucositis occurs as a direct result of these agents' inhibition of the growth and maturation of oral mucosal cells and the disruption of the primary mucosal barrier in the mouth and throat (2-5). The clinical manifestations range from a few localized ulcerations to almost complete denudation of the oral mucosa. Patients may also experience oral infections such as oral candidiasis or herpes simplex reactivation, pain, and decreased oral intake (34). In general, these manifestations begin a few days after therapy is started, peak a week after chemotherapy administration, and slowly resolve unless complicated by infections or repeated chemotherapy administration.

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Self-Care

A person's health is, in part, his or her own responsibility. Self-care activities involve actions performed on one's own behalf to maintain life, health, and well-being (35). The necessity to engage in self-care is, in essence, mandated by the realities of today's health care system. The great majority of patients receiving chemotherapy are expected to engage in self-care practices to promote or maintain their overall health and manage the side effects of their treatment. A patient's ability to perform self-care can be enhanced through mastery of knowledge and skills, and supportive care, which includes modeling, persuasion, and feedback (36).

Building on these principles and realities, we developed a nurse-initiated program called the PRO-SELF© program. The purpose of the program is to provide adult patients undergoing cancer treatment with the information, skill, and support needed to engage effectively and consistently in prescribed self-care regimens in their homes (37). The aim of the PRO-SELF© program is to reduce symptom morbidity generated by the patient's disease and/or treatment.

The PRO-SELF© program has been tested or refined in three randomized clinical trials: The initial PRO-SELF© program focused on reducing morbidity from four chemotherapy side effects (38). The second study focused on one problem, chemotherapy-induced mucositis, and used the PSMA program presented in this article (20). A current trial using the PRO-SELF© program focuses on reducing the morbidity associated with metastatic bone pain (39).

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The PRO-SELF© Mouth Aware (PSMA) Program

The PSMA program has three dimensions: (a) didactic information, (b) development of self-care exercises (skills), and (c) supportive interactions with a nurse in the setting where the patients are receiving their treatment. The PSMA program focuses on decreasing the incidence and severity of mucositis as well as the number of local infections, oral cavity pain, and changes in food or fluid intake. Reducing the incidence and severity of mucositis may decrease breaks or interruptions in chemotherapy treatments and enhance the patient's functional status.

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Information (Knowledge)

The didactic content and procedures in the PSMA program are based on the available scientific literature and clinical expertise of oncology nurses and dentists. Natural history studies demonstrate that mucositis is manifested shortly after chemotherapy begins, which suggests that a preventative approach may be beneficial. Therefore, the PSMA program is initiated when the patient begins chemotherapy.

The PSMA program incorporates the principles of good oral hygiene (i.e., a new tooth brush for each cycle of chemotherapy or monthly; consistent, regular, and thorough brushing for approximately 90 seconds to ensure that the oral cavity is clean) (6,30-33); daily flossing; regular oral assessments (6,31); and instructions on which mouth conditions (signs and symptoms) must be brought to the attention of a nurse in the patient's treatment setting (18,19,24-26). Directions are also provided for denture wearers. The PSMA program directions for non-denture wearers and denture wearers are presented in Tables 1 and 2. Table 3 lists the signs and symptoms that patients must report to the nurse in the treatment setting for further assessment to determine if mucositis is present or increasing.

TABLE 1

TABLE 1

TABLE 2

TABLE 2

TABLE 3

TABLE 3

The PSMA program provides only the information that is absolutely essential for patients to use in the care of their mouths. We chose to restrict the focus and content of the PSMA program because we found that the original PRO-SELF© program, which provided comprehensive information on the specifics of the patient's disease, chemotherapy agents, anticipated signs and symptoms (and how to manage them), appeared to overwhelm most of the patients. Apparently, they were busy with too many details to understand and implement adequately the critical dimensions of the PRO-SELF© program (20).

The PSMA program content is designed for the adult learner with at least a fourth-grade education. The didactic information and self-care exercises are contained in a concise booklet form that can be kept and used in the place where the patients do their mouth care (in most instances, the bathroom).

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Self-Care Exercises (Skills)

The PSMA program emphasizes the importance of helping patients to become proficient in the skills they need to achieve the best symptom management. By targeting specific skills and providing only essential information, practice, and support, nurses help patients gain the confidence they need to carry out a prescribed symptom management strategy. Three aspects of skill enhancement are emphasized: (a) learning the skill, (b) doing the skill correctly, and (c) doing the skill consistently.

Patients are taught, supervised, and evaluated (through a return demonstration) by a nurse on how and when to care for their mouths. Using an oral assessment guide such as the MacDibbs (40) or that by Eilers et al. (16), the nurse teaches patients how to examine their mouths. First, they learn what is normal. Then they are taught the five essential aspects of mouth assessment (see Table 3), how to do the prescribed mouth care skills, and when to notify the nurse of any changes in their mouth. The importance of informing the nurse when any mouth problems are found is emphasized in the PSMA program materials and during the nurse-patient interactions.

To assist patients in carrying out the PSMA program, they are instructed to have the following on hand: soft tooth brushes (one for each cycle or month they are going to receive chemotherapy), small bottles of drinking water (unused portions are to be discarded at the end of each day), a timer or watch to ensure that they brush their teeth for 90 seconds, a flashlight to assist them to examine their mouth, and dental floss.

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Supportive, Interactive Nursing Care

An integral part of the PRO-SELF© program is supportive, interactive nursing care. Most patients undergoing cancer treatment, especially chemotherapy, receive their care in one setting at 1- to 3-week intervals for 6 to 12 months. At each of their treatment visits, the patients see and receive their chemotherapy from the nurses employed in the setting. Some settings use a primary care approach, whereas others use a more generic approach where a variety of nurses provide care to patients over the course of their treatments. Furthermore, there are usually several patients receiving treatment at the same time. These treatment setting realities were taken into account when the PRO-SELF© program was developed.

As part of the PSMA program, nurses are taught about the purpose of the program and the specific information and skills patients need in managing their mucositis. However, the nurse's own style of nurse-patient interaction serves as the foundation for the supportive care component of the PSMA program. Besides establishing the parameters of the PSMA program, nurses are free to practice their usual style of interaction on other issues important to the patient's care. A basic premise of the PRO-SELF© program is the belief that once a relationship with the nurse is established, patients are receptive to supportive nursing care that offers encouragement and problem-solving assistance. This interaction also allows nurses the opportunity to assess and expand, when needed, the patient's self-care abilities.

Nurses need to be trained in the PSMA program protocol and commit themselves to follow it. Ideally, they should be taught how to perform a mouth assessment by a dental professional. Nurses usually determine if the patient has mucositis. Likewise, it is the nurse who helps the patient determine when mucositis is no longer a problem and the specified mouth care protocol can be discontinued. Settings that use the PSMA program must make an effort to facilitate patients in contacting a nurse if mouth problems occur. The importance of calling the nurse to report problems must be emphasized with patients to help them overcome the common concern of not wanting to "bother" the busy nurse.

Although there are three distinct dimensions to the PSMA, the process is very interactive among the dimensions. This interaction begins when the patient is introduced to the PSMA program and continues throughout the time the patient utilizes the program. Thus, although we present the three dimensions separately for clarity, in clinical practice patients are taught the PSMA program, then implement it, using the information to guide their self-care practices and, when appropriate, to interact with the nurse(s) in the treatment setting. Each dimension is essential, but it is the interactive process among the three dimensions that ensures the success of the PSMA program.

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Cost, Consistency, and Administration

The PSMA program booklets can be produced via desktop publishing on a personal computer. It is designed to be a time-efficient and patient-controlled program. The patients, after initial instructions by a nurse, are responsible for implementing the program at home. The initial instructions (i.e., a review of Table 1 or 2 and Table 3) takes approximately 15 to 20 minutes.

The PSMA is time- and cost-effective in that the nurse initiates and monitors the program when the patients have their treatment appointments. The patients then use the program at home. The nurse spends little additional time beyond the usual nurse-patient interactions that occur during the course of care. The PSMA program is complementary to the physician-patient relationship. The physician remains in charge of the patient's medical care, and the nurse is in charge of supportive facilitation of the patient's knowledge and self-care activities. Most importantly, patients have the information, skill, and support they need to prevent mucositis.

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CONCLUSION

The PSMA program is designed to provide patients with a definitive self-care repertoire to manage chemotherapy-induced mucositis. The initial data from the studies incorporating the PRO-SELF© program and several meta-analyses of patient educational programs suggest that educational approaches with efficient and productive outcomes require a definitive focus, precise skill training, and directed support (38,41-44). The PSMA program provides the critical dimensions (i.e., specific information, self-care exercises, and nurse support) to promote the prevention of mucositis.

In addition, if mucositis is controlled, there is greater potential that the patients will maintain acceptable levels of functioning during the course of their chemotherapy. By preventing mucositis, there is less likelihood that the patient's chemotherapy will be interrupted or stopped.

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Keywords:

Chemotherapy-induced mucositis; Home; Patients; Prevention; Self-care

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