Is lack of surgery for older breast cancer patients in the UK explained by patient choice or poor health? A prospective cohort study.

BACKGROUND: Older women have lower breast cancer surgery rates than younger women. UK policy states that differences in cancer treatment by age can only be justified by patient choice or poor health. METHODS: We investigate whether lack of surgery for older patients is explained by patient choice/poor health in a prospective cohort study of 800 women aged ≥70 years diagnosed with operable (stage 1-3a) breast cancer at 22 English breast cancer units in 2010-2013. DATA COLLECTION: interviews and case note review. OUTCOME MEASURE: surgery for operable (stage 1-3a) breast cancer <90 days of diagnosis. Logistic regression adjusts for age, health measures, tumour characteristics, socio-demographics and patient's/surgeon's perceived responsibility for treatment decisions. RESULTS: In the univariable analyses, increasing age predicts not undergoing surgery from the age of 75 years, compared with 70-74-year-olds. Adjusting for health measures and choice, only women aged ≥85 years have reduced odds of surgery (OR 0.18, 95% CI: 0.07-0.44). Each point increase in Activities of Daily Living score (worsening functional status) reduced the odds of surgery by over a fifth (OR 0.23, 95% CI: 0.15-0.35). Patient's role in the treatment decisions made no difference to whether they received surgery or not; those who were active/collaborative were as likely to get surgery as those who were passive, that is, left the decision up to the surgeon. CONCLUSION: Lower surgery rates, among older women with breast cancer, are unlikely to be due to patients actively opting out of having this treatment. However, poorer health explains the difference in surgery between 75-84-year-olds and younger women. Lack of surgery for women aged ≥85 years persists even when health and patient choice are adjusted for.

Communicating quality of life information to cancer patients: a study of six presentation formats.

PURPOSE: To determine which formats for presenting health-related quality of life (HRQL) data are interpreted most accurately and are most preferred by cancer patients. Patients often want a great deal of information about cancer treatments, including information relevant to HRQL. Clinical trials provide methodologically sound HRQL data that may be useful to patients. PATIENTS AND METHODS: In a multicenter study, 198 patients with previously treated cancer participated in a structured interview. Participants judged HRQL information presented in one textual and five graphical formats. Outcome measures included the accuracy of patients' interpretations and ease-of-use and helpfulness ratings for each format. RESULTS: Correct interpretations ranged from 85% to 98% across formats (F = 10.3, P < .0001) with line graphs of mean HRQL scores over time being interpreted correctly most often. Older patients and less-educated patients were less likely to interpret graphs accurately (F = 7.3, P = .008; and F = 10.6, P = .001, respectively), but all groups were most accurate on simple line graphs. Multivariate analysis revealed that format type, participant age and education were independent predictors of accuracy rates. Patients' ratings also varied across formats both for ease of understanding scores (F = 12.1, P < .0001) and for helpfulness scores (F = 13.2, P < .0001), with line graphs being rated highest on both outcomes. CONCLUSION: Patients generally prefer a simple linear representation of group mean HRQL scores, and can accurately interpret data presented in this format more than 98% of the time irrespective of their age group and educational level. The findings have important implications for the communication of clinical trial HRQL results.

Cancer patients' preferences for communicating clinical trial quality of life information: a qualitative study.

Health-related quality of life (HRQL) is a prevalent outcome measure in clinical trials, but it is not known how best to communicate HRQL results to new patients with cancer. The purpose was to explore cancer patients' attitudes toward, and preferences for, 10 visual and written formats for communicating HRQL information. Using standardized qualitative methods, six focus groups were held (two groups in each of three cancer centres) with patients who had completed treatment for cancer at least 6 months earlier. Groups were stratified according to patients' education. To ensure consistency across centres, group moderators used the same detailed guide, training video, and props. Three investigators independently coded the resulting transcripts. Participants also rated each of the 10 presentation formats as to their perceived usefulness. Fourteen men and 19 women with a variety of cancer diagnoses participated; 13 (39%) participated in the three lower-education groups and 20 (61%) in the three higher-education groups. We found that simple formats (simple graphs or written text) were generally preferred to more complex graphical information, regardless of educational level. The same format was rated favourably by the highest proportion of participants in both the high (85%) and low (85%) education level groups. Individual patients, however, varied as to which visual format they most preferred. Patients did not wish to receive HRQL information out of context or without explanation. We conclude that cancer patients desire HRQL information, but vary in their preferences for its communication. Simple formats are generally preferred.

Delirium in the terminally-ill cancer patient: aetiology, symptoms and management.

Delirium is a frequent and serious clinical problem in the terminally ill cancer patient. Multiple dimensions of delirium make definition, measurement, and assessment of it challenging in clinical nursing practice. Assessment and management of delirium requires knowledge of the diagnostic criteria for it, aetiology, signs and symptoms, and nursing interventions. Four delirium assessment scales determined to be useful in assessing patients with terminal illness are reviewed. The use of a delirium assessment instrument in routine nursing assessments would be important for the nurse's early detection of delirium so that interventions to reverse the causes of delirium could immediately be implemented.

Information needs and preferences for participation in treatment decisions among Swedish breast cancer patients.

Patient participation in treatment decisions presupposes well-informed patients. The purpose of this study was to determine Swedish breast cancer patients' information needs and their preferences for participation in treatment decisions. Patients (n = 201) were interviewed on nine categories of information and five patient roles, using paired comparisons. Patients gave priority to facts about disease and treatment (chances of cure, stage of disease, treatment options). A collaborative role in treatment decisions was preferred by 87% of the patients. Most patients (56%) preferred a passive form of collaboration: I prefer that my doctor makes the final decision about my treatment but seriously considers my opinion. Younger and better educated patients tended to prefer a more active role. Many patients wanted to be more active (20%) and some more passive (8%) than they actually were. Patients gave priority to disease-specific information, but this reflected needs other than taking control of treatment decisions.

Measuring symptom distress in patients with lung cancer. A pilot study of experienced intensity and importance of symptoms.

Patients with cancer experience high levels of symptom distress. Current measures of symptoms generally weight the importance of each symptom equally, and do not generally address the relative importance of different symptoms to patients. The purpose of this pilot study was to explore whether the assumption of equal weighting is warranted in measurements of symptom distress. Consecutive patients presenting with primary lung cancer at the Lung Medicine Unit of one Swedish hospital completed the Symptom Distress Scale and a Thurstone scale eliciting patients' weightings of the symptoms' relative importance three times: after first contact with the unit, then 1 and 2 months later. The results show that subjects weighted some symptoms as significantly more important than others, and the ordering of symptoms was found to differ by intensity and perceived importance in this group. Outlook was the symptom rated most important at T1. Fatigue received the highest intensity score, but ranked second lowest in importance. Kendall's coefficient showed minimal agreement among these patients as to the specific order for the weighting of the importance of symptoms. In addition to theoretical relevance, this issue is clinically relevant in selecting symptoms that should be the focus of intervention and in determining how the success of interventions should be judged.

Coping with breast cancer: a cluster analytic approach.

The aim of this study was to generate distinct clusters of women with breast cancer, and to evaluate differences between clusters with respect to decisional control, psychological adjustment, and frustration expression. Thirty-seven Stage I and 33 Stage II newly diagnosed breast cancer patients from two medical oncology clinics participated. A cluster analysis of the coping data produced three distinct patient clusters. The primary finding was that women from the low avoidance coping cluster were significantly better adjusted than women from the remaining clusters. Women from the low avoidance coping cluster also preferred more active involvement in treatment decision-making. Further research is needed to prospectively detail the mechanisms by which cognitive avoidance hampers psychological adjustment to cancer.

Preferences for participation in treatment decision making and information needs of parents of children with cancer: a pilot study.

This study was performed to obtain information on parents of children with cancer: (a) what role parents preferred to assume in treatment decision making (TDM); (b) parents' priority information needs; (c) if a relationship existed between TDM preferences and information needs; and (d) if sociodemographic, disease and treatment variables predicted TDM preferences or information needs. A cross-sectional survey was conducted with a convenience sample of 58 parents who had a child less than 13 years of age diagnosed with cancer in the previous year. Instruments included a Sociodemographic, Disease, and Treatment Questionnaire; the Control Preferences Scale for Pediatrics, and an Information Needs Questionnaire. The results showed that parents had systematic preferences about TDM, preferring collaborative followed by passive and active roles. Nine priorities in information needs (highest to lowest) were found: (a) treatments and tests, (b) cure, (c) caring for my child, (d) emotional impact, (e) side effects, (f) physical impact, (g) disease, (h) coping with painful procedures, and (i) impact on the family. Sociodemographic, disease and treatment variables were not predictive of preferences for TDM or information needs. Concrete informational needs take precedence over issues of emotional or family impact or pain. A low Kendall's coefficient (0.07) indicated that parents as a group do not have uniform information needs. Information giving must be individualized.

[Perception of symptom distress in lung cancer patients: I. Agreement between patients and their caregiving relatives]. / Wahrnehmung der Symptombelastung bei Lungenkrebspatienten: I. Ubereinstimmung zwischen Patienten und den sie hauptsächlich pflegenden Angehörigen.

This paper employs a comparative descriptive design to compare primary family caregivers' assessment of lung cancer patients' symptom distress with patients' own perceptions of symptom distress in the home setting. The second part describes the results of the qualitative component of this research. A convenience sample of 37 patient-family caregiver dyads completed the McCorkle and Young Symptom Distress Scale (SDS). Family caregivers' global scores were moderately correlated with patients' global scores (r = 0.71; P < 0.001). No significant differences in ratings were found for 10 of the 13 symptoms assessed. Therefore, when the patient is unable to provide a self-report of symptom distress, health-care professionals may seriously consider family caregivers' assessments of patients' symptom distress to be reasonable estimates for at least 10 of the 13 symptoms on the SDS.

Measuring the care needs of mothers of children with cancer: development of the FIN-PED.

This 2-phase study tested the Family Inventory of Needs-Pediatrics (FIN-PED), a 52-item instrument structured to include 2 subscales, the first measuring the importance of care needs and the second measuring the extent to which needs were met. In Phase I, an expert panel of 6 mothers of children with cancer rated the tool for clarity, apparent internal consistency, and content validity. All items met preset criteria for these assessments. In Phase II, 110 mothers rated the instrument for internal consistency reliability, stability over time, and internal construct validity. Both subscales achieved an estimated internal consistency of 0.94. Evidence of the instrument's stability over time was also achieved. Factor analysis resulted in 4 interpretable factors, suggesting that the tool is multidimensional.

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.

Promoting patient decision making in life-and-death situations.

OBJECTIVES: To review factors in the health care culture that deny seriously ill patients' last wishes regarding care. DATA SOURCES: Review articles and research studies that pertain to decision making. CONCLUSIONS: Decision making in palliative care has been identified as an understudied area. Although there are significant benefits to being involved in treatment decision making, long-term follow-up of the consequences of active participation in the final stages of life is lacking. IMPLICATIONS FOR NURSING PRACTICE: Nurses have a role to play in assisting patients and their families in treatment decision making in both the curative and palliative phase of care. A nursing intervention to promote patient involvement in decision making is described.

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 Thurstone's 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.

Development of a scale to measure information needs in cancer care.

Developing approaches to improve the use of scarce health care resources is of increasing importance in cancer care. Being able to target the provision of information to the primary needs of consumers ensures more productive use of expensive teaching time by health care professionals. Researchers and clinicians have used a variety of measurement techniques to assess the information needs of individuals with cancer at various points in their illness trajectory. The two most common types of scaling techniques used by researchers to measure information needs have been summative and differential. The advantages and disadvantages of using these types of measurements are evaluated. This article describes the development and pilot testing of a measure of the information needs in cancer patients that uses one type of differential scaling technique, Thurstone scaling. This measure was subsequently converted into a patient-friendly computerized program capable of helping consumers identify their information priorities before their medical visits. Individualized teaching may be guided by this new measurement technique in the future.

Perceptions of symptom distress in lung cancer patients: I. Congruence between patients and primary family caregivers.

Part I of this two-part paper employs a comparative design to compare primary family caregivers' assessments of lung cancer patients' symptom distress with patients' own perceptions of symptom distress in the home setting. Part II describes the results of the qualitative component of this research. A convenience sample of 37 patient-family caregiver dyads completed the McCorkle and Young Symptom Distress Scale (SDS). Family caregivers' global scores were moderately correlated with patients' global scores (r = 0.71; P < 0.001). No significant differences in ratings were found for ten of the 13 symptoms assessed. Therefore, when the patient is unable to provide a self-report of symptom distress, health-care professionals may seriously consider family caregivers' assessments of patients' symptom distress to be reasonable estimates for at least ten of the 13 symptoms on the SDS.

Symptom distress in adult patients with cancer.

Symptom distress in the adult population with cancer is of concern to clinicians who care for these patients. Increased research has been directed toward the development and refinement of symptom distress scales, the identification of determinants of symptom distress, the investigation of symptom distress as a predictor, and the examination of the relationship between quality of life and symptom distress. Findings from this research have increased our understanding of symptom distress in adult patients with cancer. However, a major limitation of work to date has been a lack of consensus related to the definition and measurement of the symptom distress construct. The purpose of this article is to address existing conceptual and methodological challenges inherent in the study of symptom distress, and to make recommendations for further research in this area.

Empowerment of men newly diagnosed with prostate cancer.

The purpose of this study was to explore the hypothesis that assisting men with prostate cancer to obtain information would enable them to assume a more active role in treatment decision making and decrease their levels of anxiety and depression. Respondents were recruited from one community urology clinic in Winnipeg, Manitoba. Sixty newly diagnosed men were randomly assigned to receive either a self-efficacy information intervention that consisted of a written information package with discussion, a list of questions they could ask their physician, and an audiotape of the medical consultation (n = 30), or a written information package alone (n = 30). Men completed measures of preferred decisional role as the pretest; anxiety and depression before the intervention, and at 6 weeks post-intervention; and assumed decisional role at 6 weeks post-intervention. Results demonstrated that men in the intervention group assumed a significantly more active role in treatment decision making, and had lower state anxiety levels at 6 weeks. Levels of depression were similar for both groups at 6 weeks. This group of older men do want to be informed and participate in medical decisions. Further efforts are required to evaluate the efficacy of such an intervention in other community urology clinics.

Information needs and decisional preferences in women with breast cancer.

OBJECTIVE: To determine the degree of involvement women with breast cancer wanted in medical decision making, extent to which they believed they had achieved their preferred level of involvement, and types of information they judged to be most important. DESIGN AND SETTING: Cross-sectional survey at 2 tertiary oncology referral clinics and 2 community hospital oncology clinics in Winnipeg, Manitoba. PATIENTS: Consecutive sample of 1012 women with a confirmed diagnosis of breast cancer who were scheduled for a visit at 1 of 4 hospital oncology clinics. MAIN OUTCOME MEASURES: The following measures were used: (1) Preferences about various levels of participation in treatment decision making; (2) the extent to which subjects believed they had achieved their preferred levels of involvement in decision making; and (3) priority needs for information and how these needs differed by selected sociodemographic, disease, and treatment variables. RESULTS: A total of 22% of women wanted to select their own cancer treatment, 44% wanted to select their treatment collaboratively with their physicians, and 34% wanted to delegate this responsibility to their physicians. Only 42% of women believed they had achieved their preferred level of control in decision making. The 2 most highly ranked types of information were related to knowing about chances of cure and spread of disease. Women younger than 50 years rated information about physical and sexual attractiveness as more important than did older women (P<.001); women older than 70 years rated information about self-care as more important than did younger women (P=.002); and women who had a positive family history of breast cancer rated information about family risk as more important than did other women (P=.03). CONCLUSIONS: The substantial discrepancy between women's preferred and attained levels of involvement in treatment decision making suggests that systematic approaches to assess and respond to women's desired level of participation in treatment decision making need to be evaluated. Priorities for information identified in this study provide an empirical basis to guide communication with women seeking care for breast cancer.