Treatment Adherence in Head and Neck Cancer Patients Undergoing Radiation Therapy: Challenges for Nursing

Treatment Adherence in Head and Neck Cancer Patients Undergoing Radiation Therapy: Challenges for Nursing

Treatment Adherence in Head and Neck Cancer Patients Undergoing Radiation Therapy: Challenges for Nursing j Maura Fulham Edmonds, RN, MSN, CRNP, BC; a...

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Treatment Adherence in Head and Neck Cancer Patients Undergoing Radiation Therapy: Challenges for Nursing j Maura Fulham Edmonds, RN, MSN, CRNP, BC; and Deborah B. McGuire, PhD, RN, FAAN ABSTRACT: Supporting and encouraging patients to adhere to their chosen treatment protocol is a constant challenge for nurses and other healthcare providers. In order to achieve optimal adherence, nurses must be aware of the many challenges facing their patients. This article seeks to provide nurses in the radiation settings with a review of these challenges as they relate to head and neck cancer patients. It focuses on defining the treatment-related side effects and possible nursing interventions aimed at improving patient adherence and, therefore, increasing the likelihood of positive outcomes. Adherence to treatment in the head and neck population has received little attention in the literature but the work that has been done identifies many challenges related to treatment and its side effects, the disease process, and individual patient-related challenges. This article reviews the importance of evaluating patient understanding of the importance of adherence, the physical and economic barriers to adherence and the need for effective symptom management in the successful, timely completion of treatment. It also stresses the pivotal role of nursing in the issue of adherence. By identifying these issues, nurses can better prepare patients for the treatment experience. Lastly, it stresses to need for a greater understanding of this phenomenon in order to improve adherence and future outcomes for this patient population. (J Radiol Nurs 2007;26:87-92.)

INTRODUCTION Adherence to treatment is an issue at every stage of the health care continuum. Whether considering preventive strategies, medication, or active treatment of disease, adherence is a constant challenge for health care workers and their patients. In 2003, the World Health Organization identified the importance of adherence

Maura F. Edmonds, RN, MSN, CRNP, BC and Deborah B. McGuire, PhD, RN, FAAN, are with the School of Nursing, University of Maryland, Baltimore, MD. Address reprint requests to Maura F. Edmonds, School of Nursing, University of Maryland, 2401 Pennsylvania Avenue Suite 1201, Wilmington, DE 19806-1419. E-mail: [email protected] 1546-0843/$32.00 Copyright Ó 2007 by the American Radiological Nurses Association. doi: 10.1016/j.jradnu.2007.04.003

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and the importance of training health care workers in adherence management. It defined adherence as, ‘‘the extent to which a person’s behavior-taking medication, following a diet, and or executing lifestyle changes, corresponds with agreed recommendations from a healthcare provider.’’ (Sabate, 2003, p. 3). Adherence is viewed as an active process that must involve an effective treatment relationship and one in which the patient and provider work together to negotiate a course of action (Sabate, 2003). All nurses have probably witnessed a patient’s inability or refusal to follow prescribed medical advice. As individuals, nurses can also probably remember a time when they neglected to complete a course of antibiotic, did not take a multivitamin, or conveniently forgot when they were due for an annual check-up. Nurses are often critical of patients for not doing what they, as medical professionals, believe to be the

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best course of action. As individuals, nurses know that it is rarely as easy as it sounds. After all, how many actually exercise 60 min a day, 6 days a week, eat a lowfat diet, and always wear sun block? Even though these activities may seem trivial compared to a patient’s decision to complete or not complete potentially curative treatment for a life-threatening illness, there are common threads and barriers which apply to both these situations. By examining their own behaviors, nurses can often gain insights into the minds and behaviors of their patients. For those caring for head and neck cancer patients, this identification may be more difficult and common ground less obvious, as the challenges of the disease and its treatment far exceed the average frame of reference. Nurses must use their clinical expertise and professional experiences to further guide their assessment of the possible barriers separating these patients from achieving successful outcomes. Nonadherence to treatment regimens is one of the barriers separating head and neck cancer patients from successful outcomes. The issue of adherence becomes increasingly complex as the picture of this patient population becomes clearer. To better understand adherence, a review of the disease, its treatments, and their side effects will illustrate the complexities facing these patients and set the stage for the rest of the discussion. The purpose of this paper is to outline the state of the science related to treatment adherence in head and neck cancer patients, with a focus on defining the issues and delineating the possible nursing interventions which could help to improve patients’ experiences during treatment, and, hopefully, their ability to adhere to and complete treatment. HEAD AND NECK CANCER Every year, approximately 40,000 people are diagnosed with cancer of the head and neck in the United States (including the oral cavity, pharynx, paranasal sinuses, nasal cavity, and larynx) and half a million people worldwide (Kim & Califano, 2004). In 2006, the American Cancer Society (ACS) estimated that there will be 30,990 new cases of oral and pharyngeal cancers. The incidence rate in men is twice that of women, with men over 50 years being at the highest risk (ACS, 2006). Additionally, African American men have the highest incidence and are considerably less likely to be diagnosed at an early stage. Five-year survival rates for all stages combined are 59%, which decreases to 48% survival rate at 10 years (ACS). However, there is a distinct difference when looking at survival based on race, with a 60% 5-year survival in whites and a 36% 5-year survival in African Americans (Clarke & Dropkin, 2006). In addition to the poor long-term survival, the effect on the patient’s quality of life and 88

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ability to function is profound. Both the disease and its treatment can impede or destroy the patient’s ability to speak, chew, swallow, and breathe. Both treatment and disease can also cause facial disfigurement and difficulty in communicating which can be extremely stressful for patients, caregivers and clinicians alike. Multiple treatment options exist including surgery, chemotherapy, radiation therapy, and a combination of concurrent radiation and chemotherapy. COMMON TREATMENT OPTIONS Radiation therapy has a role in the treatment of most head and neck cancers. It is valued for its organ- and function-sparing abilities (Rieger, Zalmanowitz, & Walfraadt, 2006). The treatment consists of daily doses of external beam radiation, delivered over a period of 5 or 6 weeks with fractionation of between 1.8 and 2.0 Gy fractions with a total of 70 Gy over the time allotted (Abeloff, Armitage, Niederhuber, Kastan, & McKenna, 2004). It can be used with either curative or palliative intent and can be aimed at the primary tumor, the metastasis, or both. Radiation can be used before surgery to reduce the tumor bulk and preserve organ function, concurrently with chemotherapy, or after surgery, to eradicate any remaining cancer cells (Abeloff et al.). Chemotherapy in these patients is most commonly used in combination with radiation therapy. Recent meta-analysis has shown a significant improvement in overall survival of these patients when chemotherapy is used with radiation therapy, an improvement not seen in patients receiving it as neo-adjuvant (before radiation) or adjuvant (after radiation) therapy (Licitra, Lacati, & Bossi, 2004). At present, there is a growing body of literature which supports the use of concomitant chemoradiotherapy as the best approach for local-regional control and organ preservation. The most effective agents used are a combination of fluorouracil (5FU) and cisplatin or carboplatin, given weekly while the patient is undergoing once daily radiation therapy. Using this schedule, the chemotherapy agents provide an increased sensitivity to the radiation, theoretically resulting in a greater response to treatment. The toxicities of these treatments are numerous, many resulting in potentially treatment delaying sequelae (see Table 1). They can negatively affect the patient’s ability to eat by impairing the ability to taste and swallow, and can increase the risk of pain and infection from treatment-related mucositis. In recent years, treatment for these diseases has evolved to include less invasive surgical techniques and improved methods of delivery for radiation therapy, including intensity-modulated radiation therapy and hyperfractionated methods of delivery. In each of these treatment approaches, the goal has been to

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Table 1. Common treatment side effects (adapted from Clarke & Dropkin, 2006) Side effects of treatment Acute side effects        

Dysphagia, odynophagia Esophogitis, pharyngitis Taste alterations, nutritional changes Xerostomia, secretion changes Nasal dryness Fatigue, depression Pain Mucositis, oral pain

Chronic sideeffects        

Laryngeal edema Radiation dermatitis, alopecia Dental caries, osteoradionecrosis Tissue fibrosis Ocular, otologic changes Thyroid dysfunction Spinal cord injury Xerostomia

improve long-term survival, decrease local spread of the disease, and leave the patient with the maximum amount of function. Even with these therapeutic improvements, patients undergoing the long weeks of radiation therapy often cannot complete the 5- to 6-week average course of radiation treatment. In the case of hyperfractionization, the radiation dose is divided and given more than once a day, requiring the patient to spend an even greater amount of time in the treatment area than with traditional radiation therapy. The ability to adhere to these extended and toxic treatments is a major issue in the care of head and neck cancer patients. The literature indicates that adherence rates in this population are well below 50% (Franciosi et al., 2003; Khalil et al., 2003), even though the ability to achieve positive outcomes is directly related to completion of treatment within a predefined window of time. Why is adherence an issue? Many have hypothesized that the difficulty of the treatment and its side effects, combined with a variety of psychosocial issues, prevent patients from completing treatment, but few have tried to define the exact causes of this problem. Many health care providers believe that the problem lies solely with the patientdwhether it be a lack of understanding, motivation, or self-disciplinedbut the study of adherence in other areas, including HIV (Hubbard, 2006), transplants (De Geest, Dobbels, Fluri, Paris, & Troosters, 2005), and reviews of overall patient adherence (Di Matteo, 2004; Vermeire, Hearnshaw, Van Royen, & Denekens, 2001) reveal that these are not the only pieces of the puzzle. There appear to be other factors not yet completely understood.

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Adherence to treatment in the head and neck cancer population is a phenomenon which has received relatively little attention in the literature. Adherence rates are sometimes noted in reports of clinical trials but otherwise data are scarce. In the context of trials, rates are often between 70% and 90% (Schena et al., 2005). On the surface, this is encouraging and suggests little problem, however, one must consider the abundant support available to trial participants and the lengths researchers go to prevent attrition. It is likely that these adherence rates are not representative of the average patient experience. In fact, less than 5% of all cancer patients are enrolled in clinical trails (ACS, 2006), thus these adherence rates are highly misleading. The handful of studies which have been done with patients in the community bear out the drastic difference, as they demonstrate treatment adherence rates of well below 50% (Franciosi et al., 2003; Khalil et al., 2003). Franciosi et al. (2003) evaluated the use of combination chemotherapy-radiation treatment in the head and neck cancer population. They noted low adherence rates to treatment outside the context of a clinical trial compared with the same regimen delivered as part of a clinical trial (45% discontinued treatment as compared with 26% in the clinical trial). Cathcart, Dunican, and Halpern (1997) studied survival rates of patients receiving radiation for head and neck cancer and patient outcomes related to adherence to prescribed treatment. They found a statistically significant difference in survival rates between adherent and nonadherent patients (P ! .05). They concluded that adherence appeared to be related to improved overall survival and an increase in average survival time. Alden et al. (1996) stressed the importance of avoiding treatment lapses for head and neck cancer patients receiving radiation therapy. They concluded that time between radiation treatments is ‘‘strongly predictive of survival in patients undergoing sequential chemotherapy and radiation therapy’’ (Alden et al., p. 675) and reiterated the importance of avoiding treatment delays and interruptions. Finally, when patients are not adherent to prescribed treatment protocols, they increase the risk of poor outcomes, including a lower probability of local control (Khalil et al., 2003). Although adherence to treatment has been identified as a problem in the head and neck population, there have been no studies to determine which factors actually influence whether or not a patient completes treatment. Various barriers to adherence have been posited in the literature, including both internal factors and external factors, that encompass a mixture of patient and provider decision-making and the various influences of the treatment, treatment environment, and treatment toxicities. The factors most frequently mentioned in

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the literature are discussed below, followed by possible nursing interventions available to radiation nurses. SYMPTOMS The management of these symptoms can affect not only the quality of life of patients but also their ability to withstand the rigors of treatment. For example, a patient with thick secretions may have difficulty lying down, which might then interfere with his or her perceived ability to receive or complete treatment that requires lying on the radiation treatment table daily for 5-6 weeks. Treatment-related fatigue, pain, or nutritional compromise could also impede a patient’s perceived ability to come in for treatment. Appropriate assessment and symptom management is vital to the issue of adherence. Nurses must determine, within their practice setting, how best to monitor their patients’ throughout treatment to manage the inevitable symptoms that occur. Their emphasis needs to be lessening symptom severity and providing patients and their families with useful coping strategies. Effective interven-

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tions include educating and empowering patients and family members to monitor themselves and their needs at home. Table 2 provides some examples of how to approach the management of common treatment-related symptoms in head and neck cancer patients. This list is not exhaustive and more information can be obtained from Clarke and Dropkin (2006). PATIENT UNDERSTANDING Another common issue in adherence is the ability of the patient to understand, in a meaningful way, the nature of the illness, the importance of the treatment to disease outcomes, and the consequences of choices regarding adherence. This understanding can be influenced by low literacy, cultural issues related to perception and the meaning of the illness, age, gender, and socioeconomic status. Over half of those diagnosed with head and neck cancer are over 50 years of age, the majority are male (ACS, 2006), and many have limited access to health care due to their socioeconomic status. When conveying information to these patients, nurses must

Table 2. Acute symptoms and their assessment (adapted from Clarke & Dropkin, 2006) Symptom

Assessment/Intervention/Education

Mucositis, oral pain, and infection

AdWeekly oral assessment, looking for redness, ulceration, evidence of infection. IdRecommend frequent mouth care, no alcohol, cigarettes, spicy food, commercial mouth rinse, or lemon glycerin swabs. EdTeach how to do daily oral inspection, importance of completing antibiotic or antifungal treatments, and the use of soft toothbrushes and swabs. What about local or systemic analgesics if oral pain requires it?

Dysphagia, odynophagia

AdWeigh patient weekly to assess nutritional status. IdRecommend hot or cold foods. Encourage soft, moist foods, topical or systemic pain medication before eating, and the use of a straw for liquids and a cup or glass for soups. EdExplain importance of pain control and minimization of irritation.

Nutritional changes

AdWeigh patient frequently. IdRecommend oral rinse before meals to stimulate taste buds and moisten mucosa. Eat with others or with some distraction, highly flavored food with salty or sweet flavorings, and supplement with high-calorie liquids. Avoid metal utensils. EdReinforce the importance of maintaining adequate nutritional intake and recommend a consultation with a dietitian if necessary.

Xerostomia, secretion changes

AdWeekly assessment of patient’s use of proper oral/mouth care. IdSuggest frequent mouth rinse, use of humidifier, use of sugar-free candy, or gum. EdReinforce use of mouth care regimen, use of soft foods with sauce or gravy; and importance of maintaining nutritional status.

Nasal dryness

AdAssess patients’ comfort level, fluid intake. IdProvide saline nasal spray to moisten nasal passages, petroleum jelly/hydrocortisone intranasally to moisten/provide comfort. Otorhinolaryngology consult for any obstructive secretions. EdSuggest humidifier and fluid intake of 8-10 glasses of water a day.

Fatigue and depression

AdAssess patients’ sleep patterns and activity level. IdEncourage frequent rest periods, limit naps to avoid losing sleep at night; refer to social worker if needed. EdRecommend periods of light exercise and to reduce activity when tired. Reinforce high-calorie/high-protein diet to improve energy level.

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be sensitive to their individual needs and avoid a ‘‘one size fits all’’ mentality. The connection between adherence and gender, economic status, and level of education was noted by Di Matteo et al. (2004). After a review of 50 years of adherence literature they noted that increased adherence was correlated with older age, female gender, more years of education, and increased income. One of the most commonly mentioned reasons for not adhering to treatment is that of physician-directed treatment stoppage. Generally, this situation is related to severe, dose-limiting side effects that result from the treatment plan. Although there will always be cases in which the stoppage is unavoidable, consistent and thorough assessment on the part of the nurse can reduce the incidence of this type of nonadherence by closely monitoring patients and using appropriate symptom management interventions (Khalil et al., 2003). When treatment stoppage is inevitable, nurses can provide reassurance, educate patients on the importance of completing treatment as soon as they are able, and help to keep patients from becoming discouraged. PHYSICAL AND ECONOMIC BARRIERS TO ADHERENCE Lastly, physical and economic barriers to adherence are important to consider. Patients who lack transportation, live at a great distance from the treatment facility, or have difficult work schedules are all at increased risk of nonadherence. It is important for the nurse to be aware of these limitations and help to facilitate solutions. A personalized approach is clearly necessary in this regard, as each patient’s circumstances will be unique. Besides trying to reduce barriers to adherence, nurses can also be proactive in helping patients get through their treatment regimens. As mentioned previously, the strength and quality of the patient-provider relationship is of the utmost importance. Developing a trusting, understanding, non-judgmental relationship with the patient is imperative. In addition, it is important to understand the patient’s limitations about literacy and learning style and ensure that information is provided in an appropriate way, and is being heard and understood. Lastly, it is important to assess and understand the patient’s familial and social support network, and attempt to include relevant individuals whenever possible, both when there are issues with the patient’s care and when there are not. In 1980, Becker & Maiman outlined 10 strategies for increasing adherence, also noting the importance of education to increased adherence (Table 3). In addition, they stressed the importance of the involvement of all VOLUME 26 ISSUE 3

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Table 3. Strategies for enhancing adherence (adapted from Becker & Maiman, 1980) Ten strategies for enhancing adherence 1. Increased patient education before and during treatment, about treatment, side effects, completion. 2. Decreased treatment time and complexity. 3. Understanding of the patient’s history of adherence. 4. High patient satisfaction with the patient-provider relationship. 5. Monitoring patient adherence. 6. Increased staff awareness. 7. Contract with patient, involve patient, and provide incentives. 8. Continuity of patient care. 9. Provide patient support, including their social support network. 10. Full assistance of the whole health care team.

caregivers and the patient’s social support network. Attention was also given to the quality of the relationship between the patient and the provider, continuity of care, and the treatment time and complexity. Although Becker & Maiman (1980) were looking at general populations of patients in reference to adherence, it is not difficult to see how many of these factors and strategies could be used with head and neck cancer patients. For nurses working in radiation oncology, it is vitally important that they understand the physical, emotional, and psychosocial side effects of the treatment to better counsel and support patients through the treatment experience. Close monitoring of symptoms and side effects, positive reinforcement, and careful assessment of barriers to adherence are all important steps in adherence management and will help contribute to increased numbers of positive outcomes. Careful, thoughtful, and thorough collaboration with other team members, including physicians, social workers, and advanced practice nurses can make sure that the patients’ needs are identified and addressed. CONCLUSION In conclusion, the understanding of adherence in patients with head and neck cancer is still in its infancy. This set of cancers requires treatment that is lengthy and arduous. Studies of adherence in other diseases suggest issues that are present in the head and neck cancer population, whether related to treatment complexity and intensity or to more patient-centered issues. These commonalities indicate that studies of these factors in head and neck cancer patients would be of value. Nevertheless, it is clear that the role of nursing is vital to successful treatment completion and that nurses have a unique position that allows them access to patients and their families in the treatment area. This access can be used to implement many of the identified strategies for improving adherence to treatment.

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At this time, there is a great need for future research to improve understanding of which of the previously identified factors are affecting treatment adherence in the head and neck cancer population and to what extent. There is also a need to ascertain other factors not yet described. Once more knowledge of these factors has been acquired, development of appropriate nursing interventions to improve adherence in this population can be developed and, ultimately, contribute to improved outcomes for patients. References Abeloff, M., Armitage, J., Niederhuber, J., Kastan, M., & McKenna, W. (2004). Clinical oncology (3rd ed.). Philadelphia, PA: Elsevier. Alden, M., O’Reilly, R., Topham, A., Lowry, L., Brodovsky, H., & Curran, W. (1996). Elapsed radiation therapy treatment time as a predictor of survival in patients with advanced head and neck cancer who receive chemotherapy and radiation therapy. Radiology, 201, 675-680. American Cancer Society. (2006). Cancer facts and figures 2006. Atlanta, GA: American Cancer Society. Becker, M., & Maiman, L. (1980). Strategies for enhancing patient compliance. Journal of Community Health, 6(2), 113-135. Cathcart, C., Dunican, A., & Halpern, J.N. (1997). Patterns of delivery of radiation therapy in an inner-city population of head and neck cancer patients: an analysis of compliance and end results. Journal of Medicine, 28(5-6), 275-284. Clarke, L., & Dropkin, M.J. (2006). Site-specific cancer series: Head and neck cancer. Pittsburgh, PA: Oncology Nursing Society. De Geest, S., Dobbels, F., Fluri, C., Paris, W., & Troosters, T. (2005). Adherence to the therapeutic regimen in heart, lung, and heart-lung transplant recipients. Journal of Cardiovascular Nursing, 20(55), 588-598.

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Di Matteo, M. (2004). Variations in patients’ adherence to medical recommendations: A quantitative review of 50 years of research. Medical Care, 42(3), 200-209. Franciosi, V., Fumagalli, M., Biscari, L., Martinelli, R., Ferri, T., & Bella, M., et al. (2003). Compliance and outcomes in locally advanced head and neck cancer patients treated with alternating chemo-radiotherapy in clinical practice. Tumori, 89, 20-25. Hubbard, M. (2006). Dealing with the obstacles in adhering to highly active antiretroviral therapy. Journal of the Association of Nurses in Cancer Care, 17(1), 18-25. Khalil, A., Bentzen, S., Bernier, J., Saunder, M., Horiot, J., & Bogaert, W., et al. (2003). Compliance to the prescribed dose and overall treatment time in five randomized clinical trials of altered fractionization in radiotherapy for head and neck carcinomas. International Journal of Radiation Oncology Biology and Physiology, 55(3), 568-575. Kim, M.M., & Califano, J.A. (2004). Molecular pathology of head and neck cancer. International Journal of Cancer, 112, 545-553. Licitra, L., Locati, D., & Bossi, P. (2004). Head and neck cancer. Annals of Oncology, 15(Suppl. 4), iv267-iv273. Rieger, J., Zalmanwitz, J.G., & Wolfaardt, J.F. (2006). Functional outcomes after organ preservation treatment in head and neck cancer: A critical review of the literature. International Journal of Oral and Maxillofacial Surgery, 37(7), 581-587. Sabate, E. (2003). Adherence to long-term therapies: Evidence for action. Geneva: World Health Organization. Schena, M., Barone, C., Birocco, N., Dongiovanni, D., Numico, G., & Colantonio, I., et al. (2005). Weekly cisplatin paclitaxel and continuous infusion fluorouracil in patients with recurrent and/or metastatic head and neck squamous cell carcinoma: A phase II study. Cancer Chemotherapy Pharmacology, 55, 271-276. Vermeire, E., Hearnshaw, H., Van Royen, P., & Denekens, J. (2001). Patient adherence to treatment: Three decades of research. A comprehensive review. Journal of Clinical Pharmacy and Therapeutics, 26, 331-342.

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