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.

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.

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.

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.

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.

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.

An interprofessional web-based approach to providing breast cancer education.

This paper describes the process that nursing, social work, and pharmacy faculty at a state university undertook to develop interprofessional web-based breast cancer education modules for incorporation into required curriculum. Eight web modules initially developed to educate baccalaureate nursing students on breast cancer were revised and expanded at each health professional school to include discipline-specific information pertinent to social work and pharmacy scope of practice. A specialized internet-accessible web-delivered application was constructed consisting of eight reusable learning objects, or modules, including epidemiology, risk factors and screening, diagnosis, staging and grading, treatment, survivorship, disparities, and metastatic breast cancer. These modules were organized for easy integration into existing courses and allowed for an efficient means of providing expert, evidence-based content. Innovative methods to integrate nursing, social work, and pharmacy education are needed to achieve an effective interprofessional educational approach to teaching breast cancer content.

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.

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.

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.

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.

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.

Improving nursing students' breast cancer knowledge through a novel academic and non-profit foundation partnership.

The unique partnership between an affiliate of the Susan G. Komen for the Cure(©) foundation and a school of nursing offered faculty the ability to creatively inject breast cancer content into the baccalaureate curriculum. In-house breast cancer experts and external consultants developed seven breast cancer-specific educational Web-based modules to supplement a packed curriculum taught by generalists in a cost-efficient manner. Easily integrated into the baccalaureate program, these modules provided evidence-based breast cancer content to nursing students. Following completion of the modules, baccalaureate students' knowledge of breast cancer improved.

Meeting survivors' unmet needs: an integrated framework for survivor and palliative care.

OBJECTIVES: To propose an integrated framework for survivorship care and palliative care, explore application of this framework in cancer patients, and identify research opportunities to expand the evidence base for practice. DATA SOURCES: Peer-reviewed literature, online documents from the National Quality Forum and National Consensus Project for Quality Palliative Care, and reports from the Centers for Disease Control and the Institute of Medicine. CONCLUSION: The interface between palliative care domains and survivorship care results in prioritizing needs and coordination of care along the cancer trajectory. IMPLICATIONS FOR NURSING PRACTICE: Principles of the proposed model may be incorporated into survivorship care plans and assist with multidisciplinary care of these complex patients.

A systematic review of orofacial pain in patients receiving cancer therapy.

PURPOSE: We present the findings of a structured systematic review of the literature assessing orofacial pain induced by malignant disease and/or its therapy (excluding mucositis). This evaluation of the literature published after the 1989 NIH Development Consensus conference on the oral complications of cancer therapies is an effort to assess the prevalence of pain, quality of life and economic impact, and management strategies for cancer therapy-induced orofacial pain. METHODS: A systematic medical literature search was conducted with assistance from a research librarian in MEDLINE/PubMed and EMBASE databases for articles published between January 1, 1990 and December 31, 2008. Each study was independently assessed by two reviewers with expertise in the field of oral oncology. RESULTS: Thirty-nine studies assessed pain in the head and neck region. The measure was commonly embedded in quality of life studies. Most of these studies described pain in head and neck cancer (HNC) patients, which therefore became the focus of the report. Pain is common in patients with HNC and is reported by approximately half of patients prior to cancer therapy, 81% during therapy, 70% at the end of therapy, and by 36% at 6 months after treatment. Pain is experienced beyond the 6-month period by approximately one third of patients and is typically more severe than pre-treatment cancer-induced pain. CONCLUSIONS: This systematic review identified the presence of pain before cancer therapy, likely attributable to the cancer; an increase in pain during therapy and the common persistence of pain following cancer treatment. Continuing research should use validated tools to prospectively assess orofacial pain, its causes and pathophysiology, and its effect on quality of life and economic impact. Clinical trials of pain management in this setting are also warranted.

Prevalence and correlates of depression among patients with head and neck cancer: a systematic review of implications for research.

PURPOSE/OBJECTIVES: To present a comprehensive summary of the existing research literature related to prevalence and correlates of depression in adult patients with head and neck cancer to establish a knowledge base for future research. DATA SOURCES: Quantitative studies in English measuring depression or mood in adults with head and neck cancer published from 1986-2008. DATA SYNTHESIS: A substantial body of knowledge exists regarding prevalence, correlates, and predictors of depression in patients with head and neck cancer. Prevalence rates of depression are high at diagnosis, during treatment, and in the first six months following treatment, and mild to moderate depression may continue for three to six years after diagnosis. Certain patient demographic characteristics (e.g., marital status, education), symptoms, and specific time points in the illness trajectory (e.g., time of treatment) are correlated with depression. Specific patient variables at diagnosis, such as depression, can predict depression at later time points. CONCLUSIONS: Additional research should assess symptoms using consistent depression instruments or clinical interviews based on specific criteria in patients with head and neck cancer. Specifically, multisite studies should be conducted to increase sample sizes. Research related to symptom clusters and the effect of clusters on patients is needed. Longitudinal studies that examine depression and patient characteristics, symptoms, type of treatments, and the correlates of depression across the trajectory of illness are important. Replication of existing research using multiple patient and clinical characteristics to explore predictors of depression may reveal profiles for patients most at risk. IMPLICATIONS FOR NURSING: This comprehensive summary of existing research literature related to the prevalence and correlates of depression among adult patients with head and neck cancer provides evidence-based information that can be used by oncology nurses in their practice.

The experience of a sore mouth and associated symptoms in patients with cancer receiving outpatient chemotherapy.

This study aimed to describe sore mouth (SM) severity and distress, associated symptoms, and consequences in cancer chemotherapy outpatients. Secondary analysis was used in this study. A total of 223 patients in 4 treatment centers participated in the study. Data from an intervention study using a computer-based telephone communication system to assess patients' daily symptom experience were analyzed to obtain highest, average, and lowest ratings of severity and distress for SM, fatigue, trouble sleeping, feeling down/blue, and feeling anxious. Consequence data included oral intake, time spent lying down, ability to work, and daily activity. Approximately 51% reported SM, with a mean highest, average, and lowest severity score of 3.1 in cycle 2 and 3.09 in cycle 3. Sore mouth severity was correlated with severity of fatigue, feeling down/blue, feeling anxious, and trouble sleeping. Sore mouth distress was correlated with the same symptoms. Sore mouth severity was correlated with the number of 8-oz glasses of liquid consumed, effect on daily activity, time spent lying down, but not with ability to work. Half of patients experienced SM, which was associated with several other symptoms and led to specific consequences. Understanding the complex symptom experience of patients with SM, including consequences, will assist nurses in developing more comprehensive clinical assessments and interventions. In addition, the association of multiple symptoms with SM will provide a foundation for further research investigation in oral mucositis.

Application of multilevel growth-curve analysis in cancer treatment toxicities: the exemplar of oral mucositis and pain.

PURPOSE/OBJECTIVES: To introduce the use of a statistical technique known as multilevel growth-curve analysis and illustrate how the method can be advantageous in comparison with traditional repeated measures for the study of trajectories of signs and symptoms in individual patients over time. DATA SOURCES: Data were derived from use of the technique in a randomized clinical trial of a psychoeducational intervention to reduce severity of oral mucositis and oral pain. DATA SYNTHESIS: The development of new biologic models that seek to explain clustering of signs and symptoms or the appearance and resolution of signs and symptoms motivates the need to use more sophisticated statistical techniques to test such models. CONCLUSIONS: The application of multilevel growth model to an existing data set demonstrates that the model can be effective in the study of individual differences in trajectories of change in signs and symptoms. IMPLICATIONS FOR NURSING: This method for the study of changes in patients' signs and symptoms over time can be of particular interest to nursing, both from a clinical point of view and as a way to test theoretical models that have been proposed to capture patient experiences with signs and symptoms.

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.