Psychological responses of patients receiving a diagnosis of cancer.

BACKGROUND: Current recommendations on how to break bad news are primarily based on expert opinion. Little is known about the association between communication practices and patients' psychological response. PATIENTS AND METHODS: One-hundred and thirty-one patients with newly diagnosed melanoma were surveyed 4 months after the initial consultation at the Sydney Melanoma Unit regarding their communication experiences and their satisfaction with these experiences. They completed the Hospital Anxiety and Depression Scale (HADS) at this time, and 4 and 13 months later. RESULTS: Both patients' satisfaction with communication and their psychological morbidity were found to be associated with particular communication practices. Practices linked to lower anxiety included preparing the patient for a possible diagnosis of cancer; having the people wanted by the patient present to hear the diagnosis; giving the patient as much information about the diagnosis as desired; providing written information; presenting the information clearly; discussing the patient's questions the same day; talking about the patient's feelings; and being reassuring. Practices linked with lower levels of depression included using the word 'cancer'; discussing the severity of the situation, life expectancy and how the cancer might affect other aspects of life; and encouraging the patient to be involved in treatment decisions. CONCLUSIONS: This study provided preliminary evidence that communication strategies recommended in the literature produce positive patient outcomes. Further studies are needed which document actual communication.

Hearing the bad news of a cancer diagnosis: the Australian melanoma patient's perspective.

BACKGROUND: In the past, recommendations on how to break the bad news of a cancer diagnosis have been based on expert opinion. Recently, consensus-based guidelines for medical practitioners have been developed. The objective of this work is to investigate patient preferences for communication practices and to identify any disparities between these guidelines, patient preferences and patient recollections of hearing their diagnosis. PATIENTS AND METHODS: A consecutive sample of 131 newly diagnosed melanoma patients were surveyed approximately 4 months after initial diagnosis to document their preferences and recollections of their communication experiences. RESULTS: Of the 'breaking bad news' recommendations investigated, patients did not strongly endorse the doctor helping tell others of the diagnosis or telling the patient about cancer support services. Very few patients expressed a preference for having another health professional present. One communication feature, the patient feeling confident about getting the best treatment, was endorsed as 'very important' but does not feature in published guidelines. The most notable disparities between guidelines and the reported experiences of patients related to perceived delays in receiving the diagnosis, and having adequate opportunity to ask their clinician questions. CONCLUSION: Current Australian recommendations on how to communicate a diagnosis of cancer were generally supported by the patients' expressed preferences, but several modifications are proposed. IMPLICATIONS: Suggestions are offered to help overcome the disparities identified between recommendations and patients' preferences when a diagnosis of cancer is being communicated.

Patient psychological and information needs when the diagnosis is diabetes.

People receiving a diabetes diagnosis must absorb information, change habits and adopt new behaviours almost immediately. Guidelines thoroughly cover the medical aspects of initial management however the information and psychological needs of patients are not addressed. This study aimed to identify diabetes patient needs for information and emotional support at the time of diagnosis. A sample of 1159 patients completed a questionnaire which assessed their concerns and information preferences at the time of diagnosis (response rate 64.4%). A sample of 100 general practitioners (GPs) were interviewed about their perceptions of these issues using a subset of items from the patient questionnaire. The diagnosis of diabetes was distressing for 60% of responders and 23% wanted more emotional support. Immediate issues such as injections were major concerns for patients and GPs correctly identified these. However GPs significantly overestimated complications as a concern for patients at diagnosis. Patients preferred diabetes educators and courses as sources of information. Satisfaction with information at diagnosis was high (80%), however younger patients were dissatisfied with their discussions concerning diabetes therapy. The findings suggest that clinicians giving a diagnosis of diabetes should: (1) be aware of patient variability in needs for emotional support and information preferences, (2) ask patients for their preferences and offer choices if available and (3) provide more information about treatment and increase patient involvement in discussions about therapy.

When the diagnosis is cancer: patient communication experiences and preferences.

BACKGROUND: Discrepancies exist between reported experiences of patients when they have been given a diagnosis of cancer, published guidelines for telling a diagnosis, and patterns of communication patients rate as favorable. Several studies have identified what happened and what is important to cancer patients when told their diagnosis, but no studies have addressed subsequent communications concerning the implications of the diagnosis and treatment choices. This study extended previous research by investigating the experiences and preferences for communication about diagnosis, prognosis, and treatment of patients diagnosed with breast cancer or melanoma. METHODS: A self-report questionnaire was designed for this study based on previous research and qualitative data generated from focus groups. Patients with breast cancer or melanoma answered questions about their experiences with communication at the time of diagnosis and concerning prognosis, treatment and related issues. Comparisons were made between patient experiences, preferences and published guidelines. Differences between the experiences of breast cancer and melanoma patients were tested and the relationship between communication and subsequent psychological adjustment to cancer was assessed. RESULTS: Patient preferences for communication during diagnostic consultation were not always consistent with published guidelines. Type of cancer did not significantly affect patient preferences. Psychological adjustment was related to patient ratings of the quality of doctor discussion about treatment options, but not about the diagnosis of cancer and its implications. Patients who wanted more emotional support at the time of diagnosis subsequently experienced poorer psychological adjustment. CONCLUSIONS: The differences in patient preferences show that a list of prescriptions for how to disclose a cancer diagnosis is too simplistic. Guidelines for clinicians should be derived from patient-based data rather than be limited only to clinical opinion. Guidelines concerning communication at the time of diagnosis also need to address discussions concerning the implications of the diagnosis and making treatment decisions.

Knowledge improvement and metabolic control in diabetes education: approaching the limits?

Evaluation of diabetes education programs (DEPs) has provided minimal empirical support for a relationship between improved knowledge and better metabolic control. We hypothesized that improved knowledge in specific areas is predictive of changes in specific measures of diabetes control. Patients (n = 558) attending one of five DEPs completed a diabetes knowledge questionnaire at baseline and post-DEP. Glycosylated hemoglobin (GHb) was measured at baseline and at 3 months follow-up. Total diabetes knowledge (DKN) scores increased significantly by 18%, but improvement was uncorrelated with changes in GHb (r = 0.03). Improvement in nine specific content areas failed to predict changes in GHb (all P greater than 0.05) and improvement in knowledge of the causes of hypoglycemia did not predict changes in frequency of hypoglycemia (chi 2 = 1.54; P greater than 0.05). We conclude that neither global nor specific knowledge improvement predicts metabolic control in diabetes and suggest that evaluation of diabetes education should focus more intensively on behavioral and attitudinal outcomes.

Knowledge and attitude change as predictors of metabolic improvement in diabetes education.

Randomized trials of formal diabetes education have proven that education in isolation from other aspects of diabetes care has limited impact on metabolic control through the simple transfer of information. Comprehensive programme evaluation requires assessment of the process by which knowledge and attitude change affect subsequent control of diabetes. This study examined the impact of a formal diabetes education programme on diabetes-specific knowledge and attitude, and the relationship between these characteristics and metabolic control of the disease over a 15-month period. Knowledge and attitude were assessed using parallel forms of the DKN and ATT39 scales presented randomly as pre-test and post-test to 309 patients attending a 2-day diabetes education programme. Mean knowledge scores increased by 25% (P less than 0.0001) and standardized ATT scores showed a small but significant positive shift after the programme (P less than 0.01) and remained stable in a subset of 177 patients at 3-month follow-up. ATT scores showed a marked convergence towards normal during the intervention (ANOVA, P less than 0.0001). Glycosylated haemoglobin (HbAlc), a medium-term measure of blood glucose control, was recorded in 209 cases for 6 months preceding the programme, and for 15 months following, at intervals of 3 months. The mean HbAlc improvement, from 11.3 to 9.0% (P less than 0.001), was predicted by stepwise regression from initial diabetes control (57% variance) and psychosocial factors (17% variance) including attitude scores and personality characteristics. Diabetes knowledge did not predict improvement in the control of diabetes.

Measurement of emotional adjustment in diabetic patients: validity and reliability of ATT39.

The ATT39 scale was developed as a norm-referenced measure of emotional adjustment in diabetic patients. Scores on three parallel forms of the parent scale changed in response to educational intervention, and the change in scores was predictive of subsequent improvement in metabolic control. We describe further reliability and validity studies with six factorially derived subscales of the ATT39, which measured perceived levels of stress, adaptation, guilt, alienation, illness conviction, and tolerance for ambiguity. Internal consistency (Cronbach alpha) of the unweighted total score was 0.78, and the Guttman lower bound estimate of reliability was 0.86. The test-retest reliability of the total score varied from 0.70 to 0.87, over intervals of 2 wk, 3 mo, and 6 mo, and reliability coefficients for the six factor scores averaged 0.56. ATT39 factor scores, in 134 insulin-dependent diabetes mellitus (IDDM) and 166 non-insulin-dependent diabetes mellitus (NIDDM) patients, were correlated with scores on the Cattell 16 personality factor questionnaire and the locus of control of behavior scale (LCB). In IDDM, age was related to better adaptation, increased feelings of guilt, and a more cooperative attitude to staff and treatment. In NIDDM, age was associated with increasing resignation to a conviction of chronic illness and less tolerance for the ambiguities involved in diabetes. Intelligence was correlated with less guilt and more tolerance. Anxiety was associated with significant diabetes-related stress, regardless of treatment, and with poorer adaptation and guilt in NIDDM. An external LCB was related to increased stress and guilt. The results confirm that emotional adjustment in diabetes involves dynamic interactions among feelings that are relatively stable over periods up to 6 mo and that relate meaningfully to other aspects of personality functioning.