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.

Variations in Symptom Severity Patterns Among Oropharyngeal and Laryngeal Cancer Outpatients During Radiation Treatment: A Pilot Study.

BACKGROUND: Pain, difficulty swallowing, dry mouth, taste change, appetite loss, and mouth sores are associated with radiotherapy (RT). Knowledge of individual symptom patterns (ISPs) and differences among patients during RT can provide vital information for evaluation and delivery of patient-tailored care. OBJECTIVE: The objectives of this study were to identify and describe ISPs and symptom duration, resolution, and peak severity among outpatients with oropharyngeal and laryngeal cancer. METHODS: This was an analysis of data from a larger study using Visual Graphical Analysis to examine 21 outpatients' ISPs over RT. Individual symptom patterns for 6 severe symptoms were grouped by ISP and evaluated by a panel of experts. RESULTS: Three types of ISPs were identified. The majority of patients displayed a problematic ISP type for pain and difficulty swallowing. When the ISPs of a patient's 6 symptoms were displayed together, the presence of several ISP types was noted. A majority experienced at least 1 symptom pattern that was problematic, indicating the uniqueness of each patient's symptom experience. CONCLUSIONS: During cancer treatment, patients experience multiple symptoms that change in severity over a course of care. Visualizing the patterns of patient-reported symptoms provided information regarding 6 severe symptoms experienced by patients. IMPLICATIONS FOR PRACTICE: Identifying ISPs provided information about symptom variations among patients with oropharyngeal and laryngeal cancer, which can influence symptom management strategies used by providers. Study techniques used can be useful for nurses when managing patients' symptoms. In the future, information using real-time data visualized as patterns could be used to manage multiple symptoms experienced by patients during treatment.

The relationships among coping strategies, religious coping, and spirituality in African American women with breast cancer receiving chemotherapy.

PURPOSE/OBJECTIVES: To (a) examine coping capacity, psychological distress, spiritual well-being, positive and negative religious coping, and coping strategies among African American (AA) women with breast cancer, and (b) explore relationships among these variables to enhance an already tested comprehensive coping strategy program (CCSP) intervention for AA women with breast cancer (CCSP-AA). DESIGN: Descriptive-correlational. SETTING: Comprehensive cancer center in Maryland. SAMPLE: 17 AA women with breast cancer. METHODS: Women completed the Hospital Anxiety and Depression Scale, Sense of Coherence scale, Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being, Brief Religious Coping Inventory, and Coping Strategies Questionnaire. MAIN RESEARCH VARIABLES: Psychological distress, coping capacity, coping strategies, religious coping, and spiritual well-being. FINDINGS: A higher coping capacity was beneficial, as it was related to less psychological distress, negative religious coping, and catastrophizing. Women using less negative religious coping had greater spiritual well-being and less distress. Using more coping self-statements was associated with higher spiritual well-being and less negative religious coping. Catastrophizing had a negative effect on psychological distress and spiritual well-being. CONCLUSIONS: The development of a CCSP-AA that incorporates aspects of spirituality and components in a coping intervention needs to be tested in a clinical trial. The intervention will teach patients to recognize and restructure their thinking to avoid catastrophizing and negative religious coping. IMPLICATIONS FOR NURSING: Nurses need to work collaboratively with AA women to reinforce beneficial coping patterns and approaches. A tailored CCSP-AA for women with breast cancer administered by a nurse can be taught to assist AA patients in coping more effectively. KNOWLEDGE TRANSLATION: AA women with breast cancer use more positive religious coping and experience less distress and greater spiritual well-being, but catastrophizing has a negative effect on spiritual well-being. Nurses need to reinforce positive coping patterns for AA women with cancer.

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.

Physicians' and nurses' experiences of the influence of race and ethnicity on the quality of healthcare provided to minority patients, and on their own professional careers.

This qualitative content analysis examines data from African-American and Hispanic physician and nurse focus groups conducted by the Institute of Medicine (IOM). Participants discussed the influence of race and ethnicity regarding perspectives on healthcare provided to ethnic minority patients, and on the professional careers of ethnic minority physicians and nurses. A majority of responses related to Racism and Prejudice, which affected ethnic minority patients and health-care providers at three levels (health-care system to patient, provider to patient, and provider to provider). Racism and Prejudice interfered with promotions, obtaining hospital privileges, and advancement in careers. Communication and Culture was important among patients who preferred racially concordant care providers. Role Modeling was found to be important as participants entered and matured in their professional careers. Findings provide compelling evidence that racism and prejudice are shared experiences between ethnic minority physicians and nurses throughout their careers. One concerning finding was that perceived prejudice materialized at the onset of medical and nursing education and remained a predominant theme throughout the professionals' careers. Research should be directed towards providing equity in care and on the careers of ethnic minority health-care professionals.

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 role of ultrasound-guided fine-needle aspiration of axillary nodes in the staging of breast cancer.

BACKGROUND: As a complement to sentinel node dissection (SLND), we evaluated ultrasound-guided fine-needle aspiration (USFNA) of normal and abnormal axillary nodes in breast cancer patients. We hypothesized that USFNA would be accurate for primary breast tumors larger than 2 cm. METHODS: We retrospectively reviewed 68 patients who underwent 69 preoperative USFNAs from 2003 to 2005. The results of 65 preoperative USFNA were compared with the results of SLND or axillary node dissection (ALND) for concordance. Four USFNAs were excluded from analysis because of a complete response to neoadjuvant therapy. We evaluated whether primary tumor features (histology, size, grade, vascular invasion, estrogen/progesterone receptor status and Her-2-neu status) predicted concordance of USFNA results and the final lymph node pathology. RESULTS: Of 65 axillae analyzed, 39 (60%) were positive, four (6%) were non-diagnostic, and 22 (34%) were negative by USFNA. USFNA had 89% sensitivity, 100% specificity, and 100% positive predictive value (PPV) in patients with palpable or ultrasonographically suspicious nodes. USFNA sensitivity dropped significantly for nonpalpable, ultrasonographically normal nodes (54%), while specificity and PPV remained 100%. None of the primary tumor features predicted concordance of USFNA and SLND/ALND. CONCLUSIONS: USFNA of axillary nodes has a high specificity and PPV in clinically or radiologically suspicious nodes. Sensitivity of USFNA is low for nodes of normal appearance, but positive USFNA may allow definitive management of the axilla without a SLND. Thus, USFNA of normal appearing nodes might be beneficial in cases where decisions regarding neoadjuvant chemotherapy would be affected by the results.

Assessment of perioperative psychological distress in patients undergoing radical cystectomy for bladder cancer.

PURPOSE: Despite a recent growth in our understanding of the impact of psychosocial factors on the outcome of patients with cancer there is still relatively little known about the effect of these issues on patients with genitourinary malignancies. We determined the prevalence of psychological distress in patients with bladder cancer prior to and following radical cystectomy. MATERIALS AND METHODS: A total of 74 consecutive patients with clinically organ confined bladder cancer were prospectively surveyed preoperatively using the Basic Symptom Inventory-18, a validated instrument that measures the psychological domains of general distress, anxiety, depression and somatization. Of the initial 74 patients 62 were available for postoperative assessment 1 month following cystectomy. Preoperative and postoperative distress scores were evaluated with respect to age, sex, marital status, type of surgical reconstruction and tumor stage. RESULTS: The preoperative prevalence of psychological distress in patients diagnosed with bladder cancer was 45% and it remained somewhat increased at 34% approximately 4 weeks after cystectomy. Demographic factors such as gender, age, and marital status were not significantly associated with the overall prevalence of distress. In the entire study group there was a statistically significant decrease in general distress (p = 0.028), depression (p = 0.034) and anxiety (p = 0.0004) from the preoperative to the postoperative assessments. Pathological stage was significantly associated with post-cystectomy anxiety (p = 0.040) and general distress (p = 0.042). CONCLUSIONS: Our findings indicate that a large proportion of patients with bladder cancer undergoing radical cystectomy experience psychological distress during the perioperative period. The identification of psychological distress in this population has the potential to influence health related quality of life as well as recovery in all individuals with bladder cancer.

Preoperative somatic symptoms are associated with disease progression in patients with bladder carcinoma after cystectomy.

BACKGROUND: A link between patient psychologic factors and bladder carcinoma outcome has not been demonstrated. The purpose of the current study was to assess the association of psychologic factors measured preoperatively with bladder carcinoma progression after cystectomy. METHODS: The Brief Symptom Inventory (BSI)-18 was administered prospectively to 65 patients with clinically localized bladder carcinoma before surgery. The BSI-18 measures distress in three specific domains-depression, anxiety, and somatization (i.e., distress due to somatic symptoms)-as well as general distress. Preoperative BSI-18 scores, tumor pathologic stage, and certain clinical variables were compared with disease status. Disease progression was defined as the development of either local disease recurrence or distant metastasis. Univariate and multivariate Cox proportional hazards models were constructed for statistical analysis. RESULTS: Of the 65 patients, 49 (79.4%) had no evidence of disease, 4 (6.2%) had local disease recurrence, and 12 (18.5%) had metastatic disease at last follow-up. The mean follow-up time was 1.3 years and did not differ significantly between survival outcomes (P = 0.577). Both tumor pathologic stage and preoperative somatic distress scores were associated with time to disease progression by univariate analysis (P = 0.038 and P = 0.055, respectively). After adjusting for tumor pathologic stage, a somatic distress score of > or = 2.00 was a significant predictor of disease progression (P = 0.044, hazard ratio = 3.31, 95% confidence interval = 1.03-10.60). Patient age, gender, reconstruction type, and BSI-18 scores for depression, anxiety, and general distress were not significantly associated with disease outcome. CONCLUSIONS: The authors found no correlation between psychologic symptoms measured preoperatively (i.e., depression, anxiety, and general distress) and bladder carcinoma progression. However, they reported an association between somatic symptoms and cancer outcome. If confirmed by other studies, these results may have important implications for the diagnosis, staging, and potential treatment of patients with bladder carcinoma.

The development and pilot testing of a teaching booklet for oncology patients' self-assessment and perineal skin care.

Oncology patients often experience skin breakdown as a result of chemotherapy. Often the loss of skin integrity is neither identified nor treated until it becomes severe and painful. If patients were taught to identify early signs of breakdown and to report these symptoms to a health care provider, treatment for these conditions could begin at an early stage. Nursing staff identified the need to develop a booklet that would both instruct adult oncology patients concerning necessary perineal care following therapy and encourage them to partner with the nursing staff to provide this care through self-assessment and reporting. The focus of this article is the process of developing and pilot testing such a booklet by 27 female oncology patients undergoing peripheral stem cell transplantation. Participants were given a handheld mirror as an aid to assess perineal skin changes. Feedback from both staff and patients was very positive. As patients identified and reported perineal skin changes to the nursing staff, both patients and nurses implemented established perineal skin care protocols. This teaching booklet, The Perineal Skin Self-Assessment Guide, focuses on the partnering of nurses and patients to promote the involvement of patients in their own care.

Malignant cutaneous wounds: developing education for hospice, oncology and wound care nurses.

This article reports the results of an educational project, which included a needs assessment survey and the development of a malignant cutaneous wound educational programme. As there is little information on the differences between the management of malignant cutaneous wounds in the hospice and oncology settings, a survey was undertaken to identify differences encountered by hospice and oncology nurses. This needs assessment survey also included enterostomal/wound-ostomy-continence (ET/WOC) nurses who serve as wound care consultants in oncology and hospice settings. The 12-question survey addressed the frequency of wounds, symptoms, and psychosocial issues encountered. The education programmes was individualized to the setting by determining the differences between the nurses' roles based partially on the survey information. One interesting survey finding was that many of the nurses were using the internet to obtain answers for wound management questions; therefore, a future implication of this project is the need to develop an online malignant cutaneous wound educational programme for nurses.