Susan C. McMillan

Validity and reliability of the Constipation Assessment Scale.

Constipation is a significant problem in patients receiving neurotoxic chemotherapeutic agents, narcotic analgesics, antidepressants, tranquilizers, and muscle relaxants. Increasingly, as acute care moves into the community, nurses will need valid and reliable methods of assessing constipation in individuals with cancer. The purpose of this project was to study the validity and reliability of the Constipation Assessment Scale, a new tool designed to assess the presence and severity of constipation. The sample consisted of two groups: a control group of 32 working adults and a patient group of 32 adults at risk for constipation because of treatment with Vinca alkaloids or morphine. Consenting subjects were asked to complete the eight-item Constipation Assessment Scale (CAS). A significant difference in intensity of symptoms between the two groups (t = 6.32, p less than 0.0001) demonstrates the ability of the CAS to differentiate between subjects with and without constipation and thus provides evidence of construct validity of the scale. Further analysis of scores of the two subgroups in the patient group (subjects receiving morphine vs. Vinca alkaloids) revealed a significant difference (t = 2.54, p less than 0.01) in symptom intensity. This latter finding supports the ability of the CAS to differentiate between moderate and severe symptom intensity. Subjects completed the CAS in approximately 2 min. To study the test-retest reliability of the scale, a group of 16 apparently healthy working adults were asked to fill out the CAS twice with a 1-h delay. The two sets of scores were correlated (r = 0.98).(ABSTRACT TRUNCATED AT 250 WORDS)

Measuring quality of life in hospice patients using a newly developed Hospice Quality of Life Index

The purpose of this study was to evaluate the validity and reliability of the newly developed Hospice Quality of Life Index (HQLI). Sixty-eight patient/caregiver dyads from one hospice were asked to fill out the HQLI on admission and after 3 weeks of hospice care. Hospice experts evaluated the items on the tool to assess content validity. The content validity index (0.83) and the alpha coefficients (r=0.87 and 0.83) supported the validity and reliability of the HQLI. Item analysis revealed items with which patients were most satisfied and aspects of quality of life that were considered to be most important.

Measuring What Matters: Top-Ranked Quality Indicators for Hospice and Palliative Care From the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association

CONTEXT Measuring quality of hospice and palliative care is critical for evaluating and improving care, but no standard U.S. quality indicator set exists. OBJECTIVES The Measuring What Matters (MWM) project aimed to recommend a concise portfolio of valid, clinically relevant, cross-cutting indicators for internal measurement of hospice and palliative care. METHODS The MWM process was a sequential consensus project of the American Academy of Hospice and Palliative Medicine (AAHPM) and Hospice and Palliative Nurses Association (HPNA). We identified candidate indicators mapped to National Consensus Project (NCP) Palliative Care Guidelines domains. We narrowed the list through a modified Delphi rating process by a Technical Advisory Panel and Clinical User Panel and ratings from AAHPM and HPNA membership and key organizations. RESULTS We narrowed the initial 75 indicators to a final list of 10. These include one in the NCP domain Structure and Process (Comprehensive Assessment), three in Physical Aspects (Screening for Physical Symptoms, Pain Treatment, and Dyspnea Screening and Management), one in Psychological and Psychiatric Aspects (Discussion of Emotional or Psychological Needs), one in Spiritual and Existential Aspects (Discussion of Spiritual/Religious Concerns), and three in Ethical and Legal Aspects (Documentation of Surrogate, Treatment Preferences, and Care Consistency with Documented Care Preferences). The list also recommends a global indicator of patient/family perceptions of care, but does not endorse a specific survey instrument. CONCLUSION This consensus set of hospice and palliative care quality indicators is a foundation for standard, valid internal quality measurement for U.S. SETTINGS Further development will assemble implementation tools for quality measurement and benchmarking.

Methodologic Issues in Collecting Data From Debilitated Patients With Cancer Near the End of Life

PURPOSE/OBJECTIVES To report the experience of a group of researchers who have had a year of experience in a clinical trial with homecare hospice patients. SAMPLE 150 hospice patients with cancer and their primary caregivers who were accrued to a National Cancer Institute-funded clinical trial focusing on quality of life. METHODS The investigative team kept careful records of the numbers of patient/caregiver dyads accrued to the study and the reasons for nonaccrual as well as reasons for attrition. Data were analyzed using descriptive statistics. FINDINGS During a nine-month period, the hospice admitted 2,517 patients; 75% had cancer and 95% had caregivers, making them eligible for the study. However, after further screening, only 19% were eligible for contact and only 5% finally were accrued to the study. For the 125 patient/caregiver dyads actually accrued to the study, baseline data were obtained on only 50% and evaluable follow-up data on only 50%. CONCLUSIONS Accruing patients to clinical trials and retaining them when they are critically ill and near death are extraordinarily difficult tasks. The inability to recruit and retain subjects for clinical trials has implications for integrity of data, data analysis, success of the project, and the cost of conducting such projects in the future.

Using the COPE intervention for family caregivers to improve symptoms of hospice homecare patients: a clinical trial.

PURPOSE/OBJECTIVES To test an intervention for hospice caregivers designed to help them better manage symptoms experienced by patients with cancer. DESIGN A three-group comparative design with repeated measures. SETTING A large nonprofit hospice that primarily provides home care. SAMPLE 329 hospice homecare patients with cancer and their caregivers were randomized into three groups: a control group (n = 109) receiving standard care, a group (n = 109) receiving standard care plus friendly visits, and a group (n = 111) receiving standard care plus the COPE intervention. METHODS Caregivers received experimental training in the COPE intervention (creativity, optimism, planning, expert information) over nine days to assist with symptom management. MAIN RESEARCH VARIABLES Intensity of pain, dyspnea, and constipation, overall symptom distress, and quality of life (QOL). Data were collected on admission and days 16 and 30. FINDINGS Although symptom intensity for three target symptoms did not decrease, symptom distress was significantly improved (p = 0.009) in the COPE intervention group. QOL was not significantly different. CONCLUSIONS Symptom distress, a measure that encompasses patient suffering along with intensity, was significantly decreased in the group in which caregivers were trained to better manage patient symptoms. IMPLICATIONS FOR NURSING The COPE intervention is effective and immediately translatable to the bedside for hospice homecare patients with advanced cancer.

Sleep-wake disturbances in people with cancer part I: an overview of sleep, sleep regulation, and effects of disease and treatment.

PURPOSE/OBJECTIVES To provide an overview of normal sleep, describe common sleep disorders, and discuss underlying sleep regulatory processes and how cancer, cancer treatment, and associated patient responses may adversely affect sleep. DATA SOURCES Published peer-reviewed articles and textbooks. DATA SYNTHESIS The duration, structure, and timing of sleep have a profound impact on health, well-being, and performance. Patients with cancer may be at risk for disturbances in sleeping and waking resulting from disease- and nondisease-related circumstances that interfere with normal sleep regulation, including demographic, lifestyle, psychological, and disease- and treatment-related factors. CONCLUSIONS Patients with cancer are at high risk for sleep-wake disturbances. IMPLICATIONS FOR NURSING An understanding of normal sleep, sleep pathology, and the factors that can precipitate sleep disturbance provides a context for nurses to interpret sleep complaints in their patients, evaluate responses to sleep-promoting interventions, and guide decision making regarding referrals.

Assessing and Managing Opiate-Induced Constipation in Adults with Cancer:

Cancer Control 3 pation among persons with cancer is unknown,some studies have investigated patients receiving hospice care and who are receiving active curative treatment. The range of prevalence in hospitalized patients receiving cancer treatment varies from 70% to 100%.2-4 Studies of patients with advanced cancer who are receiving hospice care show that the prevalence of constipation ranges between 23% and 84%.2,3,5-9 A series of studies9-11 conducted in a large Florida hospice evaluated opiate-induced constipation and found that 40% to 64% of hospice patients with cancer have been found to have constipation. However, the number was lower when the data were obtained from a chart audit (40%)9 and higher when the researchers prospectively interviewed patients about their symptoms (63% to 64%).10,11 Walsh6 found constipation to be the most common side effect of morphine among 688 hospice patients, with a prevalence of 48%. The finding of constipation is relevant because studies have shown that it is negatively related to overall quality of life (r = –.38, P<.001).12

Management of pain and pain-related symptoms in hospitalized veterans with cancer.

Unrelieved pain continues to be a problem among hospitalized patients with cancer. The purpose of this study was to evaluate pain management outcomes in a group of veterans with cancer receiving inpatient care. The sample consisted of 90 veterans with cancer hospitalized in one of two large veterans medical centers in the southeastern United States. Daily pain was assessed by administering the visual analog scale (VAS) for pain three times in a 24-hour period and averaging these three scores. The Brief Pain Inventory (BPI) and Constipation Assessment Scale (CAS) were administered once. The charts were audited using the Chart Audit for Pain (CAP). The sample was predominantly male (93.3%) and white (82.8%). The length of time since diagnosis ranged from newly diagnosed during this hospitalization to 16 years. Average daily pain was 32.9 on the VAS and 4 on the BPI. However, approximately one-fourth of the patients reported average daily pain above the midpoint (VAS > 50), and some patients reported average daily pain to be as high as 98. Fewer than half of charts (42%) showed evidence that a pain rating scale was used. Other assessment data also were very limited. Patients reported that pain interfered with all activities on the BPI, with highest interference scores for walking and sleep (mean, 5.5). Although 80% of the patients reported some problem with constipation, the chart audit indicated that this was recorded in only 11 patient records. No patient records indicated a problem with sedation. The findings indicate that limited attempts were made to manage pain using nonpharmacologic methods. In addition, only one of the nine charts reporting these attempts showed evidence that results from the attempt were evaluated. It may be concluded that pain management continues to be less than ideal in these veterans hospitals. Study results indicate that nurses are not documenting careful assessment of pain, not documenting evaluation of approaches to pain management, and not attending to the constipation that is inevitable when opioids are administered. Continued emphasis on nursing education related to pain management is needed. Future research should be undertaken to evaluate these outcomes.

Hospice patient and caregiver congruence in reporting patients' symptom intensity.

As healthcare increasingly moves out of hospitals, the care of patients with cancer is provided in the community with the help of family caregivers. In many cases, nurses depend on family caregivers to provide assessment data about patients. This makes the accuracy and dependability of the data given by caregivers particularly important. However, it is not clear whether caregivers can accurately and dependably report such subjective data as symptom intensity. The purpose of this project was to evaluate the ability of the primary caregiver to report the symptom intensity of hospice patients with cancer. The sample consisted of 264 newly admitted adult patients with advanced cancer in hospice home care and their primary caregivers. These subjects were part of a large National Institutes of Health (NIH)-funded randomized clinical trial focused on symptom management and quality of life. The patients were alert and oriented. Among the questionnaires completed by both patients and caregivers on admission were numeric rating scales for pain and dyspnea and the Constipation Assessment Scale. All of these scales were designed to describe the patient’s symptom intensity. The patient sample was predominantly white (83%) and male (57%), with a mean age of 71.6 years. The caregiver sample was predominantly white (85%) and female (78%), with a mean age of 62 years. The results indicated that caregivers significantly overestimated symptom intensity for all three symptoms (P = .000). Furthermore, the limited variance accounted for by the two sets of scores for each of the symptoms (R2 = .16−.26) indicated much more error in the scores than agreement between patient and caregiver. It appears that family caregivers cannot reliably report patient symptom intensity. Healthcare providers need to train family caregivers in conducting systematic assessments instead of assuming that they understand patient symptoms.

Comparison between African-American and white women in their beliefs about breast cancer and their health locus of control.

The purpose of this study was to examine the health beliefs of African-American and white women about breast cancer and locus of control, using the health belief model and the health locus of control construct. The Health Screening Questionnaire, developed by Sugarek, Deyo, and Holmes, was used to collect self-report data about health beliefs related to breast cancer and health locus of control. Participants included 197 white and 152 African-American women, between the ages of 19 and 93, recruited from various settings in central Florida. Significant differences were found between the two groups on all of the health beliefs about cancer items. The African-American women were significantly more likely to believe in chance, or to depend on powerful others for their health. Perceived susceptibility to cancer, doubts about the value of early diagnosis, and beliefs about the seriousness of breast cancer all were significantly associated with powerful other scores among African-American women. There was no relation between health beliefs and years of education for African-American women, but for white women, those with the least education were more likely to believe that death was inevitable with a cancer diagnosis. These results add to the information needed for the development of effective programs aimed at increasing breast cancer screening among African-American women.