Perspectives of Inpatients With Cirrhosis and Caregivers on Using Health Information Technology: Cross-sectional Multicenter Study.

BACKGROUND: Health information technology (IT) interventions to decrease readmissions for cirrhosis may be limited by patient-associated factors. OBJECTIVE: The aim of this study was to determine perspectives regarding adoption versus refusal of health IT interventions among patient-caregiver dyads. METHODS: Inpatients with cirrhosis and their caregivers were approached to participate in a randomized health IT intervention trial requiring daily contact with research teams via the Patient Buddy app. This app focuses on ascites, medications, and hepatic encephalopathy over 30 days. Regression analyses for characteristics associated with acceptance were performed. For those who declined, a semistructured interview was performed with themes focused on caregivers, protocol, transport/logistics, technology demands, and privacy. RESULTS: A total of 349 patient-caregiver dyads were approached (191 from Virginia Commonwealth University, 56 from Richmond Veterans Affairs Medical Center, and 102 from Mayo Clinic), 87 of which (25%) agreed to participate. On regression, dyads agreeing included a male patient (odds ratio [OR] 2.08, P=.01), gastrointestinal bleeding (OR 2.3, P=.006), or hepatic encephalopathy admission (OR 2.0, P=.01), whereas opioid use (OR 0.46, P=.03) and alcohol-related etiology (OR 0.54, P=.02) were associated with refusal. Race, study site, and other admission reasons did not contribute to refusing participation. Among the 262 dyads who declined randomization, caregiver reluctance (43%), perceived burden (31%), technology-related issues (14%), transportation/logistics (10%), and others (4%), but not privacy, were highlighted as major concerns. CONCLUSIONS: Patients with cirrhosis admitted with hepatic encephalopathy and gastrointestinal bleeding without opioid use or alcohol-related etiologies were more likely to participate in a health IT intervention focused on preventing readmissions. Caregiver and study burden but not privacy were major reasons to decline participation. Reducing perceived patient-caregiver burden and improving communication may improve participation. TRIAL REGISTRATION: ClinicalTrials.gov NCT03564626; https://www.clinicaltrials.gov/ct2/show/NCT03564626.

Methodological challenges in conducting instrumentation research in non-communicative palliative care patients.

Well-designed, rigorously implemented instrumentation studies are essential to develop valid, reliable pain assessment tools in non-communicative (non-self-reporting) palliative care patients. When conducting a pain instrumentation study, a research team identified methodologic challenges surrounding informed consent, eligibility criteria, acute pain operational definitions, patient recruitment, missing data, and study-related training during a run-in phase at the beginning of the project and during the conduct of the study. The team dealt with these challenges through identifying root causes, implementing remedial measures, and collecting data to demonstrate improvement or resolution. Effective strategies included obtaining Institutional Review Board (IRB) approval for a waiver of informed consent, modifying eligibility criteria, ensuring that operational definitions and study procedures were consistent with clinical practice, decreasing time from screening to data collection to improve recruitment, increasing study nurse staffing by re-budgeting grant funds, focusing time and resources on high accruing clinical units, revising processes to minimize missing data, and developing detailed training for users of the instrument. With these multi-pronged solutions, the team exceeded the patient accrual target by 25% within the funding period and reduced missing data. While pain instrumentation studies in non-communicative patients have similar challenges to other palliative care studies, some of the solutions may be unique and several are applicable to other palliative care studies, particularly instrumentation research. The team's experience may also be useful for funders and IRBs.

Measuring Acute Pain Over Time in the Critically Ill Using the Multidimensional Objective Pain Assessment Tool (MOPAT).

BACKGROUND: A valid and reliable instrument is needed to assess acute pain in critically ill patients unable to self-report and who may be transitioning between critical care and other settings. AIM: To examine the reliability, validity, and clinical utility of the Multidimensional Objective Pain Assessment Tool (MOPAT) when used over time by critical care nurses to assess acute pain in non-communicative critically ill patients. METHODS: Twenty-seven patients had pain assessed at two time points (T1 and T2) surrounding a painful event for up to 3 days. Twenty-one ICU nurses participated in pain assessments and completed the Clinical Utility Questionnaire. RESULTS: Internal consistency reliability coefficient alphas for the MOPAT were .68 at T1 and .72 at T2. Inter-rater agreement during painful procedures or turning was 68% for the behavioral dimension and 80% for the physiologic dimension. Validity was evidenced by decreases (p < .001) in the MOPAT total and behavioral and physiologic dimension scores when comparing T1 and T2. Nurses found the tool clinically useful. CONCLUSION: The MOPAT can be used in the critical care setting as a helpful tool to assess pain in non-communicative patients. The MOPAT is unique in that the instrument can be used over time and across settings.

MASCC/ISOO clinical practice guidelines for the management of mucositis secondary to cancer therapy.

BACKGROUND: Mucositis is a highly significant, and sometimes dose-limiting, toxicity of cancer therapy. The goal of this systematic review was to update the Multinational Association of Supportive Care in Cancer and International Society of Oral Oncology (MASCC/ISOO) Clinical Practice Guidelines for mucositis. METHODS: A literature search was conducted to identify eligible published articles, based on predefined inclusion/exclusion criteria. Each article was independently reviewed by 2 reviewers. Studies were rated according to the presence of major and minor flaws as per previously published criteria. The body of evidence for each intervention, in each treatment setting, was assigned a level of evidence, based on previously published criteria. Guidelines were developed based on the level of evidence, with 3 possible guideline determinations: recommendation, suggestion, or no guideline possible. RESULTS: The literature search identified 8279 papers, 1032 of which were retrieved for detailed evaluation based on titles and abstracts. Of these, 570 qualified for final inclusion in the systematic reviews. Sixteen new guidelines were developed for or against the use of various interventions in specific treatment settings. In total, the MASCC/ISOO Mucositis Guidelines now include 32 guidelines: 22 for oral mucositis and 10 for gastrointestinal mucositis. This article describes these updated guidelines. CONCLUSIONS: The updated MASCC/ISOO Clinical Practice Guidelines for mucositis will help clinicians provide evidence-based management of mucositis secondary to cancer therapy.

Systematic review of basic oral care for the management of oral mucositis in cancer patients.

PURPOSE: The purpose of this project was to evaluate research in basic oral care interventions to update evidence-based practice guidelines for preventing and treating oral mucositis (OM) in cancer patients undergoing radio- or chemotherapy. METHODS: A systematic review of available literature was conducted by the Basic Oral Care Section of the Mucositis Study Group of MASCC/ISOO. Seven interventions--oral care protocols, dental care, normal saline, sodium bicarbonate, mixed medication mouthwash, chlorhexidine, and calcium phosphate--were evaluated using the Hadorn (J Clin Epidemiol 49:749-754, 1996) criteria to determine level of evidence, followed by a guideline determination of one of the following: recommendation, suggestion, or no guideline possible, using Somerfield's (Classic Pap Cur Comments 4:881-886, 2000) schema. RESULTS: Fifty-two published papers were examined by treatment population (radiotherapy, chemotherapy, and hematopoietic stem cell transplant) and by whether the intervention aimed to prevent or treat OM. The resulting practice suggestions included using oral care protocols for preventing OM across all treatment modalities and age groups and not using chlorhexidine mouthwash for preventing OM in adults with head and neck cancer undergoing radiotherapy. Considering inadequate and/or conflicting evidence, no guidelines for prevention or treatment of OM were possible for the interventions of dental care, normal saline, sodium bicarbonate, mixed medication mouthwash, chlorhexidine in patients receiving chemotherapy or hematopoietic stem cell transplant, or calcium phosphate. CONCLUSIONS: The evidence for basic oral care interventions supports the use of oral care protocols in patient populations receiving radiation and/or chemotherapy and does not support chlorhexidine for prevention of mucositis in head and neck cancer patients receiving radiotherapy. Additional well-designed research is needed for other interventions to improve the amount and quality of evidence guiding future clinical care.

Prevalence and correlates of symptoms and uncertainty in illness among head and neck cancer patients receiving definitive radiation with or without chemotherapy.

PURPOSE: This repeated measures, prospective study was designed to explore and describe symptom dimensions, depressive symptoms, and uncertainty in newly diagnosed oropharyngeal and laryngeal cancer patients during and 1 month following treatment. MATERIALS AND METHODS: A non-probability sample of 21 oropharyngeal and laryngeal cancer patients receiving definitive radiation completed the Memorial Symptom Assessment Scale, Beck Depression Inventory, and Mishel's Uncertainty in Illness Scale at treatment initiation, and at 5, 9, and 12 weeks. RESULTS: A common pattern of 11 symptoms, which changed as treatment progressed, was problematic for patients. Physical symptoms increased by 50% at week 5 and 9. Depression was experienced by 24% of patients. Uncertainty was found to be high at all time points and unexpectedly remained unchanged over time (p = 0.73). Positive correlations (p < 0.05) were found among number of symptoms, symptom distress, and depressive symptoms. Uncertainty was correlated (p < 0.05) statistically only to symptom distress. CONCLUSION: This study is the first to identify uncertainty in illness among oropharyngeal and laryngeal cancer patients and found it to be higher than for other cancer populations. Findings provide insights into the uncertainty of living through treatment and provide information for patient care. The consistent pattern of high levels of uncertainty during and 1 month after treatment suggests that the uncertainty related to acute illness could extend into chronic uncertainty which may interfere with a cancer survivor's adaption to daily living after treatment. Further research is needed to investigate other variables that influence uncertainty during treatment as well as 1 to 6 months after treatment for head and neck cancer.

Palliative care and end of life: the caregiver.

Informal caregivers are a key component of end-of-life/palliative care and are increasingly recognized as recipients of care. Numerous factors affect the care they give and they have significant care needs themselves. The purpose of this survey was to identify key research questions, priorities, and next steps for research on caregivers and palliative care. A literature search of publications between 2006 and 2011 was conducted, yielding 109 studies that were evaluated on type, quality, topic, and other factors. An interdisciplinary group of healthcare professionals examined results and recommended research priorities. Existing research is primarily descriptive in nature, with few interventions to guide practice. Future research priorities include factors influencing caregivers and roles, information and support needs, caregiver health, end-of-life issues, healthcare disparities, and delivery and costs of care. Conclusions include that expanding the science will contribute to improving caregiver performance and health.

Symptom clusters and health-related quality of life in people with chronic stable angina.

AIM: This paper reports findings of a study to examine the independent contribution of chest pain, fatigue and dyspnoea to health-related quality of life in people with chronic stable angina. BACKGROUND: People with chronic stable angina experience poorer quality of life in multiple areas including physical and emotional health. Emerging evidence suggests the presence of concomitant symptoms yet there are no systematic studies examining the impact of symptom clusters on quality of life in people with chronic angina. METHOD: Outpatients (n = 134), recruited over a 16-month period in 2000 and 2001, with confirmed coronary heart disease and chronic angina completed reliable and valid questionnaires measuring chest pain frequency, fatigue, dyspnoea and quality of life. The data have contemporary relevance because despite changes in treatment of coronary heart disease, chronic angina remains prevalent worldwide. Hierarchical multiple linear regression was used to examine the symptom cluster of chest pain frequency, fatigue and dyspnoea in predicting quality of life. RESULTS: The sample was predominantly white (74·6%), men (59·7%) with a mean age of 63·4 (sd 12·12) years. Controlling for age, gender, social status and co-morbidities, the symptom cluster of chest pain frequency, dyspnoea and fatigue accounted for a statistically significant increase in unadjusted R² (F of Δ, P < 0·05) for the models predicting physical limitation (R² Δ 24·1%), disease perception (R² Δ 24·6%), Short Form-36 Physical Component Score (R² Δ 24·3%) and Mental Component Score (R² Δ 07·0%). CONCLUSION: Symptom assessment and management of people with chronic stable angina should involve multiple symptoms. Greater fatigue predicted poorer quality of life in multiple areas. As a possible indicator of depression, it warrants further assessment and follow-up.

Body Image Related to Sexual Health: Development of the Concept.

INTRODUCTION: Disturbances in body image can have an impact on sexual health and are prevalent in women of reproductive age. Although body image is important, the definition of this concept is inconsistent across the disciplines of nursing, medicine, and psychology. Use of a consistent definition in clinical practice and research could lead to a more comprehensive understanding of disturbances in body image, thereby advancing research-based knowledge and clinical practice. The purpose of this concept development was to advance the concept of body image as it relates to sexual health among women of reproductive age from the perspectives of 3 disciplines with a strong focus on body image: nursing, medicine, and psychology. METHODS: Strategies for concept development as described by Rodgers provided the basis for this work. The process includes a search, review, and synthesis of the literature surrounding the concept of interest. RESULTS: Seventy-one articles, mostly qualitative and quantitative descriptive, were included and used to develop the concept. Body image related to sexual health in women of reproductive age is a multifaceted concept that is composed of an emotional and behavioral response to one's perceived appearance, sexuality, and degree of femininity. An individual's body image is influenced by sociocultural identities, race, ethnicity, and health status. It has both physical and psychological impact on health outcomes. DISCUSSION: This interprofessional and comprehensive definition of body image should enhance understanding, assessment, and management of body image disturbances, thus bridging disciplines and enhancing interprofessional research and practice.

Body Image, Sexuality, and Sexual Functioning in Women With Gynecologic Cancer: An Integrative Review of the Literature and Implications for Research.

BACKGROUND: Cervical and uterine cancers are common in women. Diagnosis and treatment of these cancers can lead to significant issues with body image, sexuality, and sexual functioning. A comprehensive review can improve understanding of these 3 concepts, in turn enhancing identification and management. OBJECTIVES: To (1) present the qualitative, descriptive, and correlational research literature surrounding body image, sexuality, and sexual functioning in women with uterine and cervical cancer; (2) identify gaps in the literature; and (3) explore the implications of the findings for future research. METHODS: A comprehensive search of the literature was undertaken by searching PubMed, CINAHL, and PsycINFO using predetermined subject headings, keywords, and exploded topics. After a comprehensive evaluation using specific criteria, 121 articles were reviewed. RESULTS: Qualitative studies provided information about women's issues with body image, sexuality, and sexual functioning, whereas quantitative studies focused primarily on sexual functioning. The literature lacks correlational studies examining body image and sexuality. Significant issues regarding communication and quality of life were noted, and few studies were based on clear conceptual models. CONCLUSION: The state of the science gleaned from this review reveals that while much is known about sexual functioning, little is known about body image and sexuality. IMPLICATIONS FOR PRACTICE: Further work is warranted to develop conceptual models and research on body image, sexuality, and sexual functioning as a foundation for interventions to improve quality of life.

Patterns of sore mouth in outpatients with cancer receiving chemotherapy.

GOALS: The aims of this secondary data analysis were to (a) categorize patterns in the development, duration, intensity, and resolution of sore mouth (which can be considered a proxy for oral mucositis) severity and distress over two cycles of chemotherapy in cancer outpatients and (b) examine the relationship of demographic (age, gender, marital status, and educational level) and disease characteristics (type of cancer and type of chemotherapy) to specific patterns of sore mouth (SM). MATERIALS AND METHODS: Visual graphical analysis (VGA) was applied to identify individual patterns of SM severity and distress in 51 outpatients receiving chemotherapy who provided daily reports of sore mouth using a computerized interactive voice response system. The majority were female (n = 41, 8%) with a mean age of 53 (SD = 8.35). Most had breast cancer (68%), and one third received chemotherapy with adriamycin and cyclophosphamide (AC). VGA is a technique in which graphs of individual patients' symptoms are coded for specific individual or group profiles. MAIN RESULTS: Seven distinct patterns were identified based on variability in onset, duration, and intensity (degree of severity or distress). Chemotherapy agents were significantly associated with patterns of SM. The AC regimen was significantly associated with late onset; however, the intensity did not last long. In contrast, patients receiving R-CHOP were significantly more likely to experience duration intensity (SM after day 15 and a score equal to or greater than a 5 on a 1-10 scale). CONCLUSIONS: VGA revealed symptom patterns often hidden in traditional analysis. Understanding individual variability is important to the design and implementation of future intervention research and clinical care.

Pain Assessment in Noncommunicative Adult Palliative Care Patients.

Palliative care patients who have pain are often unable to self-report their pain, placing them at increased risk for underrecognized and undertreated pain. Use of appropriate pain assessment tools significantly enhances the likelihood of effective pain management and improved pain-related outcomes. This paper reviews selected tools and provides palliative care clinicians with a practical approach to selecting a pain assessment tool for noncommunicative adult patients.

Symptom clusters: concept analysis and clinical implications for cancer nursing.

The purpose of this article is to analyze the concept of symptom clusters and to discuss its application to cancer nursing to promote communication and enhance scientific knowledge. Rodgers' evolutionary method of concept analysis served as the framework for reviewing literature from psychology/psychiatry, general medicine, and nursing. Attributes of symptom clusters were relationships of symptoms and relationships of clusters, concurrence, underlying dimensions, stability, and common etiology. The major antecedent was the presence of 2 or more symptoms. Consequences were poorer physical health status, interference with activities of daily living, emotional distress, and increased financial burden. A symptom cluster is defined as consisting of 2 or more symptoms that are related to each other and that occur together. Symptom clusters are composed of stable groups of symptoms, are relatively independent of other clusters, and may reveal specific underlying dimensions of symptoms. Relationships among symptoms within a cluster should be stronger than relationships among symptoms across different clusters. Symptoms in a cluster may or may not share the same etiology. Symptom should be broadened to include both subjective (self-reported) symptoms and objective (observed) signs. Implications for researchers include the need to use a clear definition, determine the optimal methods of identifying etiology and nature of symptom clusters in various populations, assess the clinical utility of symptom clusters, and test interventions. Implications for practitioners include the need to comprehensively assess symptoms over the entire cancer trajectory, select interventions that target single and multiple symptoms, and evaluate outcomes that include quality of life and economic variables.

Occurrence of cancer pain.

Occurrence of cancer pain is highly variable and incompletely understood. Surveys are not population-based, are characterized by small heterogeneous samples, and provide sketchy data on etiology of pain, pain syndromes, and clinical or demographic factors. Moreover, the multiple dimensions of pain have not been thoroughly elucidated. Cancer-related pain is caused by the following: 1) direct tumor involvement, 2) diagnostic/therapeutic procedures, and 3) side effects or toxicities of treatment. Individuals may have more than one type of cancer-related pain simultaneously. Occurrence rates range from 14% to 100%, and between 33 and 50% of patients experience pain at some point in the cancer trajectory. Rates are higher (e.g., 70%-100%) in palliative care or pain management settings. Few researchers have focused solely on specific causes of pain in specific patient populations, and only a few included groups at higher risk for pain, such as the elderly or underserved. In general, researchers have not followed pain over time to determine its course, severity, effects on quality of life and functional status, and other related factors. Future researchers should aim to acquire specific information on occurrence of pain in a variety of cancer diagnoses, settings, and groups of people. Longitudinal designs, in-depth exploration of dimensions of pain, and delineation of specific issues in groups such as the elderly, children, and vulnerable populations are essential. Addressing these critical areas will improve our understanding of the occurrence and effects of pain and enhance our ability to provide appropriate interventions, thereby increasing patients' quality of life.

Gender differences in pain characteristics of chronic stable angina and perceived physical limitation in patients with coronary artery disease.

Chronic stable angina pectoris, the chest pain associated with reversible myocardial ischemia has detrimental effects on health-related quality of life, particularly in women. The limited research on gender differences in chronic stable angina suggests that angina may be experienced differently in women and that women report greater functional disability related to angina symptoms. No studies have examined gender differences in chronic stable angina from a multidimensional pain perspective or have included reliable and valid measures of pain that would facilitate comparing chronic angina patients with other chronic pain populations. The purpose of this descriptive study was to examine gender differences in characteristics of chronic stable angina using the short-form McGill pain questionnaire (SF-MPQ) and to explore relationships among these pain characteristics and perceived limitation in performing physical activities in patients with coronary artery disease (CAD) (physical limitation subscale of the Seattle angina questionnaire). One hundred and twenty-eight subjects (30.5% women) with stable CAD and angina pectoris documented by a cardiologist completed study questionnaires in an outpatient cardiology clinic. Results of the study suggest that men and women with chronic stable angina had more similarities than differences in chest pain characteristics. No significant gender differences were demonstrated in total sensory or affective intensity scores, the present pain intensity index, or the number of pain words chosen. However, women did report significantly greater pain intensity on the SF-MPQ visual analogue scale. Women were also significantly more likely to describe their chronic angina as 'hot-burning' and 'tender' and to have greater intensity of pain for these two descriptors. Despite the similarities in pain characteristics, women reported greater physical limitation related to anginal pain. The variables of social status and years diagnosed with CAD significantly interacted with gender in predicting physical limitation suggesting that gender-specific models of physical limitation in angina patients need to be explored. To our knowledge, this is one of the first studies that has assessed chronic anginal pain using a reliable and valid generic pain instrument. More research is needed to better understand the nature of gender differences in functional limitation secondary to anginal pain and the physiologic, cognitive-perceptual and psychosocial mechanisms that lead to angina-related functional disability.

Evidence-based guidelines for managing mucositis.

OBJECTIVES: To discuss implementation of evidence-based clinical practice guidelines for mucositis. DATA SOURCE: Published articles, book chapters, web sources, clinical experience, unpublished manuscripts. CONCLUSION: Nurses can implement evidence-based guidelines but must include an evaluation component to determine effect on clinical outcomes. IMPLICATIONS FOR NURSING PRACTICE: Nurses have an integral role implementing and evaluating evidence-based practice guidelines for managing mucositis. When evidence is lacking and guidelines have gaps, nurses can play important roles in research to overcome these gaps.

A pilot study of the experience of family caregivers of patients with advanced pancreatic cancer using a mixed methods approach.

CONTEXT: Pancreatic cancer presents a wide spectrum of significant symptomatology. The high symptom burden, coupled with a rapidly fatal diagnosis, limits preparation or time for adjustment for both patients and their family caregivers. From the initial diagnosis and throughout the illness experience, the physical and emotional demands of caregiving can predispose caregivers themselves to illness and a greater risk of mortality. Understanding the negative and positive aspects of caregiving for patients with advanced pancreatic cancer will inform interventions that promote positive caregiver outcomes and support caregivers in their role. OBJECTIVES: To provide feasibility data for a larger, mixed methods, longitudinal study focused on the experience of family caregivers of patients with advanced pancreatic cancer and preliminary qualitative data to substantiate the significance of studying this caregiver population. METHODS: This was a mixed methods study guided by the Stress Process Model. Eight family caregivers of patients with advanced pancreatic cancer from oncology practices of a university-affiliated medical center were surveyed. RESULTS: The pilot results supported the ability to recruit and retain participants and informed recruitment and data collection procedures. The qualitative results provided preliminary insights into caregiver experiences during the diagnosis and treatment phases. Key findings that substantiated the significance of studying these caregivers included the caregiving context of the history of sentinel symptoms, the crisis of diagnosis, the violation of assumptions about life and health, recognition of the circle of association, and contextual factors, as well as primary and secondary stressors, coping strategies, resources, discoveries, gains and growth, associated changes/transitions, and unmet caregiver needs. CONCLUSION: Findings indicated caregivers' willingness to participate in research, highlighted the negative and positive aspects of the caregiver experience, and reinforced the significance of the future study and the need to develop interventions to support family caregivers in their roles.

Education and referral criteria: impact on oncology referrals to palliative care.

OBJECTIVE: To describe a quality improvement project involving education and referral criteria to influence oncology provider referrals to a palliative care service. METHODS: A single group post-test only quasi-experimental design was used to evaluate palliative care service (PCS) referrals following an intervention consisting of a didactic presentation, education outreach visits (EOV) to key providers, and referral criteria. Data on patient demographics, cancer types, consult volume, reasons for referral, pre-consult length of stay, overall hospital stay, and discharge disposition were collected pre-intervention, then post-intervention for 7.5 months and compared. SETTING AND SAMPLE: Attending oncologists, nurse practitioner, and house staff from the solid tumor division at a 700-bed urban teaching hospital participated in the project. Two geriatricians, a palliative care nurse practitioner, and rotating geriatric fellows staffed the PCS. RESULTS: The percentage of oncology referrals to PCS increased significantly following the intervention (χ(2) = 6.108, p = .013). 24.9% (390) patients were referred in the 4.6 years pre-intervention and 31.5% (106) patients were referred during 7.5 months post-intervention. The proportion of consults for pain management was significantly greater post-intervention (χ(2) = 5.378, p = .02), compared to pre-intervention, when most referrals were related to end-of-life issues. Lung, pancreatic, and colon were the most common cancer types at both periods, and there were no significant differences in patient demographics, pre-referral length of hospitalization or overall hospital days. There was a trend toward more patients being discharged alive following the intervention. CONCLUSION: A quality improvement project supported the use of education and referral criteria to influence both the frequency and reasons for palliative care referral by oncology providers.

Perspectives on coping among patients with head and neck cancer receiving radiation.

PURPOSE/OBJECTIVES: To describe coping among patients with laryngeal and oropharyngeal cancer during definitive radiation with or without chemotherapy. RESEARCH APPROACH: Qualitative content analysis conducted within a larger study. SETTING: Two radiation oncology outpatient clinics in Baltimore, MD. PARTICIPANTS: 21 patients with oropharyngeal or laryngeal cancer. METHODOLOGIC APPROACH: Interviews with open-ended questions were conducted during treatment. Questions covered topics such as coping during treatment, treatment-related issues, and resources. MAIN RESEARCH VARIABLES: Coping, treatment, and coping resources. FINDINGS: Patients' self-assessments suggested they were coping or that coping was rough or upsetting. Issues that required coping varied over four time points. Physical side effects were problematic during and one month after treatment completion. Patients used coping to manage the uncertainties of physical and psychological aspects of their experience. Family and friend support was a common coping strategy used by patients, with the intensity of side effects corresponding with the support provided across time points. CONCLUSIONS: Findings confirm previous research, but also provide new information about ways in which patients with head and neck cancer cope with their illness experience. Emergent themes provide insight into patients' feelings, issues, and assistance received with coping. INTERPRETATION: Patients with head and neck cancer need education on the amount and severity of side effects and should be appraised of potential difficulties with scheduling, driving, and other logistic issues. Patients also should be informed of helpful types of support and coping strategies. Additional research is needed to expand the findings related to patients' coping with treatment and to explore the experiences of family and friends who provide social support.

Supportive care treatment guidelines: value, limitations, and opportunities.

Evidence-based guidelines in clinical oncology practice are now prominent, with emphasis on clinical, health outcome and economic perspectives. Given the complexity of cancer management, a multidisciplinary approach is essential. Evidence-based guidelines to address supportive cancer care have merged expert opinion, systematic evaluation of clinical and research data, and meta-analyses of clinical trials. Production of supportive care guidelines by the interdisciplinary team is dependent on sufficient high-quality research studies. Once published, it is essential they be customized at institutional and national levels. Implementation in clinical practice is perhaps the greatest challenge. Optimal management occurs through integration of country-specific issues, including care access, healthcare resources, information technology, and national coordination of healthcare practices. The purpose of this article is to: (1) provide an overview of interdisciplinary cancer management using evidence-based guidelines; (2) delineate the theory and practice of guideline dissemination, utilization and outcome assessment; and (3) recommend future research strategies to maximize guidelines use in clinical practice.