Lesley F. Degner

Decision making during serious illness: What role do patients really want to play?

Two surveys were conducted to determine what roles people actually want to assume in selecting cancer treatments. 436 newly diagnosed cancer patients and 482 members of the general public participated. Preferences were elicited using two card sort procedures, each of which described five potential roles in decision making. Findings suggested that the impact of being diagnosed with a life-threatening illness may influence preferences to participate. The majority (59%) of patients wanted physicians to make treatment decisions on their behalf, but 64% of the public thought they would want to select their own treatment if they developed cancer. Most patients (51%) and members of the public (46%) wanted their physician and family to share responsibility for decision making if they were too ill to participate. Sociodemographic variables accounted for only 15% of variance in preferences. These variables are not particularly useful in making predictions about which groups want more or less active roles in medical decision making.

Symptom distress in newly diagnosed ambulatory cancer patients and as a predictor of survival in lung cancer

Levels of symptom distress are most often measured in a clinical trial context rather than in general ambulatory populations. The purpose of this paper is to report levels of symptom distress in such a population, and to describe the factors associated with this distress. Over a 6-month period, a consecutive sample of 434 newly diagnosed patients, including 82 patients with lung cancer, were tested with the symptom distress scale at two tertiary oncology clinics serving the population of one Canadian prairie province. While levels of symptom distress in this population were generally low, the most problematic symptoms for patients were fatigue and insomnia, with 40% and 30% having moderate or high scores on these symptoms, respectively. Patients with advanced disease reported more distress than those with early stage disease; women reported more distress than men; older patients had less distress than younger patients; distress was highest in lung cancer patients and lowest in men with genitourinary cancers. Consistent with the findings of four previous studies, the single measure of symptom distress was a significant predictor of survival in lung cancer patients, with the exception of three patients who had substantial post-thoracotomy symptoms.

Treatment decision making in women newly diagnosed with breast cancer.

The purpose of this study was to explore the hypothesis that women with breast cancer had specific preferences about the degree of control they wanted over treatment decision making. One hundred fifty women, newly diagnosed with breast cancer, were interviewed and their preferences for participation in treatment decision making were established using a measurement tool designed to elicit decision-making preferences (Degner LF, Sloan JF. Decision making during serious illness: What role do patients really want to play? J Clin Epidemiol 1992;45:944-50). Two hundred women with benign breast disease served as a descriptive comparison group. Unfolding theory (Coombs CH. A theory of data. New York: John Wiley & Sons, 1964) provided a means of analyzing the data so that the degree of control preferred by each woman could be established. The majority of the newly diagnosed women preferred to play a passive role in treatment decision making, leaving the decision-making responsibility to their physician, whereas the benign control group preferred a collaborative role in which joint decisions could be made between the patient and the physician. The implications of the results for patient participation are discussed.

Assessing information and decision preferences of men with prostate cancer and their partners

The purpose of this study was to identify and compare information and decision preferences of men with prostate cancer and their partners at the time of diagnosis. A convenience sample of 80 couples was recruited from The Prostate Centre in Vancouver, Canada. Participants used a computerized version of two previously used measures with this population: Control Preferences Scale and Information Survey Questionnaire. Results showed that men had a preference to play either an active or a collaborative role in decision making with their physician (92.5%) and partners (100%). The majority (55%) of partners wanted to play a collaborative role in treatment decision making. Couples identified prognosis, stage of disease, treatment options, and side effects as the top 4 information preferences. Men ranked information on sexuality more important than partners, and partners ranked information on home self-care higher than men. Men who had sons, a positive family history, and lower levels of education ranked heredity risk significantly higher. Profiles of information categories did not differ according to role preferences of either men or partners. The computer program has been shown to be a reliable and acceptable method of assessing information and decision preferences of these couples. An individualized approach is suggested, given the high reliability of individual’s profiles.

Information and patient participation in screening for prostate cancer

The purpose of this study was to determine if providing men with information about screening for prostate cancer would enable them to assume a more active role in decision making with their family physician, and lower levels of anxiety and decisional conflict. Men were recruited from one family medical clinic in Winnipeg, Manitoba. One hundred men scheduled for a periodic health examination (PHE) were randomly assigned to receive verbal and written information either prior to the PHE, or following the second interview. Men completed measures of preferred decisional role and anxiety prior to the PHE; and assumed decisional role, decisional conflict, and anxiety post PHE. Results demonstrated that men who received the information prior to the PHE assumed a significantly more active role in making a screening decision, and had lower levels of decisional conflict post PHE. The two groups did not differ with regard to levels of state anxiety. Providing men with information enables them to make informed screening decisions with their family physicians.

Provision of individualized information to men and their partners to facilitate treatment decision making in prostate cancer.

PURPOSE/OBJECTIVES To determine if providing individualized information to men who are newly diagnosed with prostate cancer and their partners would lower their levels of psychological distress and enable them to become more active participants in treatment decision making. DESIGN Quasiexperimental, one group, pretest/post-test. SETTING The Prostate Centre at Vancouver General Hospital in British Columbia, Canada. SAMPLE Convenience sample of 74 couples. 73 men had early-stage prostate cancer. Mean age of the men was 62.2 years, and mean age of the partners was 58.1 years. The majority (> 50%) had received their high school diplomas. METHODS Respondents completed measures of decision preferences and psychological distress at the time of diagnosis and four months later. All participants used a computer to identify their information and decision preferences. Computer-generated, graphic printouts were used to guide the information counseling session. FINDINGS Patients reported assuming a more active role in medical decision making than originally intended, partners assumed a more passive role in decision making than originally intended, and all participants had lower levels of psychological distress at four months. CONCLUSIONS Evidence supports the need to provide informational support to couples at the prostate cancer diagnosis to facilitate treatment decision making and lower levels of psychological distress. Future research is needed to evaluate this type of approach in the context of a randomized clinical trial design. IMPLICATIONS FOR NURSING The personalized, computer-graphic printouts can provide clinicians with an innovative method of guiding information counseling and providing decisional support to men with prostate cancer and their partners.

Symptoms in patients with lung carcinoma: distinguishing distress from intensity.

The patient perspective on distress associated with lung carcinoma is important, yet understudied. Previous research on symptom experience generally had not differentiated the dimension symptom intensity/frequency from which symptoms are associated with most distress. The objective of the current study was to determine whether patterns of symptom intensity were similar to patterns of symptom distress, whether patterns were consistent at different time points, whether patterns varied by subgroups, and whether high symptom intensity was equivalent to distress.

Information needs, uncertainty, and anxiety in women who had a breast biopsy with benign outcome

A retrospective, descriptive study to determine the information needs of women who underwent a breast biopsy with a benign outcome and to ascertain the levels of uncertainty and anxiety they experienced was conducted in two community health care sites in Winnipeg, Manitoba. A sample of 70 women completed a four-part survey after learning the benign breast biopsy diagnosis. The survey consisted of an Information Needs Questionnaire, Mishel Uncertainty in Illness Scale--Community Form, State-Trait Anxiety Inventory, and a Demographic Questionnaire. Before the study, nine information needs were identified in a focus group composed of women (n = 9) who had a benign breast biopsy. The nine information needs were arranged in 36 pairs in the Information Needs Questionnaire. Profiles of information needs were developed through Statistical Analysis Systems analysis using Thurstones Law of Comparative Judgement--Case V. The most important information need of women who underwent a benign breast biopsy was knowing when they would learn the diagnosis. The next four information needs were categorized as information about the risks of developing breast cancer. Information about follow-up and diagnostic tests were less important than information about the threat of breast cancer. Women experienced heightened uncertainty and anxiety levels related to the benign breast biopsy experience. Profiles of information needs were developed for women experiencing various levels of uncertainty and anxiety, women of different age groups, and women who experienced with a loved one with breast cancer.

Validity and Reliability of the Family Inventory of Needs (FIN): Measuring the Care Needs of Families of Advanced Cancer Patients

Two studies balanced qualitative and quantitative data to provide evidence of satisfactory validity and reliability of the Family Inventory of Needs (FIN). The FIN is designed to measure the importance of care needs of families of advanced cancer patients (FIN-Importance of Care Needs subscale) and the extent to which families perceive that their care needs have been met (FINFulfillment of Care Needs subscale). The first study involved development of the instrument and testing for clarity, apparent internal consistency (nonquantitative assessment of homogeneity of content), and content validity using a panel of six experts (family members of advanced cancer patients). The FIN met or exceeded the preset criteria specified used in this phase of testing. The second study of the project used 109 family members of advanced cancer patients from three hospice programs to test the FIN for internal consistency and construct validity. Internal consistency of the FIN-Importance of Care Needs subscale as measured by Cronbach’s alpha coefficient was .83 without redundancy. Construct analysis was assessed using factor analysis techniques. An inability to extract a substantively meaningful minimum number of factors, together with the fact that a theta reliability coefficient of .85 was obtained (only .02 higher than the alpha coefficient), suggested that the items were parallel supporting the conclusion that the subscale is unidimensional. Support for the construct validity of the FINImportance of Care Needs subscale was also obtained using predictive modeling. The internal structure of the FIN-Fulfillment of Care Needs subscale was assessed using cluster analysis. Results suggested that the subscale is a unidimensional one. Overall, the FIN met the preset reliability and validity criteria providing promising evidence for the instrument’s sound psychometric properties for use in research and clinical settings.

Symptom Prevalence, Intensity, and Distress in Patients With Inoperable Lung Cancer in Relation to Time of Death

PURPOSE To examine symptom prevalence, intensity, and association with distress in patients with inoperable lung cancer (LC), using time to death as point of reference. PATIENTS AND METHODS A consecutive sample of 400 patients completed the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C30 plus a 13-item LC-specific scale and the Thurstone Scale of Symptom Distress-Lung Cancer at six time points during the first year after diagnosis. Patients were divided into subgroups, using data from the time point closest to death (< 1; 1 to 2; > 2 to 3; > 3 to 6; > 6 to 12; and > 12 months before death) for analysis. RESULTS More than 50% of patients in all subgroups reported problems related to physical, role, and emotional functioning; fatigue; dyspnea; and cough. In general, functional levels were lower and symptoms higher in subgroups closer to death. Notably, clinically relevant differences were also found in role and social functioning and appetite loss between the two groups furthest from death. A consistent pattern was found among the six subgroups, with breathing, pain, and fatigue rated as the symptoms most associated with distress. CONCLUSION High prevalence of symptoms was found in all subgroups, with higher intensity in subgroups closer to death, indicating a need for prophylactic and proactive symptom management. Less concordance was found among symptom prevalence, intensity, and association with distress in subgroups further from death. Future studies should investigate longitudinal associations between symptoms with low intensity and high distress, and examine their clinical implications.