Sydney Medical School - Northern Level 7 Kolling Building Royal North Shore Hospital St Leonards NSW 2065 AUSTRALIA
stewd@med.usyd.edu.au
Professor of Psychological Medicine, Sydney Medical School, Royal North Shore Hospital Associate Dean (Medical Admissions), University of Sydney Director, Pam McLean Centre, Sydney Medical School - Northern Chair, Human Research Ethics Committee, Northern Sydney Central Coast Health
Abstract: Objectives. No longitudinal studies have concurrently evaluated predictors of anxiety, depression, and fatigue in people with multiple sclerosis (PwMS). This study determined factors that best predicted anxiety, depression, and fatigue in MS patients from a large pool of disease, cognitive, life-event stressor (LES), psychosocial, life-style, and demographic factors. Design. A 2-year prospective longitudinal study evaluated predictors of psychological distress and fatigue in PwMS. Methods. One hundred and one consecutive participants with MS were recruited from two MS clinics in Sydney, Australia. LES, anxiety, depression, and fatigue were assessed at baseline and at 3-monthly intervals for 2-years. Disease, cognitive, demographic, psychosocial, and life-style factors were assessed at baseline. Patient-reported relapses were recorded and corroborated by neurologists or evaluated against accepted relapse criteria. Results. Depression strongly predicted anxiety and fatigue, and anxiety and fatigue strongly predicted later depression. Psychological distress (i.e. anxiety, depression) was also predicted by a combination of unhealthy behaviours (e.g. drug use, smoking, no exercise, or relaxation) and psychological factors (e.g. low optimism, avoidance coping), similar to the results of community-based studies. However, state-anxiety and fatigue were also predicted by immunotherapy status, and fatigue was also predicted by LES and demographics. Conclusions. These results suggest that similar factors might underpin psychological distress and fatigue in MS patients and community-well samples, although MS treatment factors may also be important. These results might assist clinicians in determining which MS patients are at greatest risk of developing anxiety, depression, or fatigue.
Abstract: This article explores the way that professionals are being inducted into articulating apologies to consumers of their services, in this case clinicians apologising to patients. The article focuses on the policy of Open Disclosure that is being adopted by health care organisations in the US, Canada, the UK and Australia and other nations. Open Disclosure policy mandates 'open discussion of clinical incidents' with patient victims. In Australia, Open Disclosure policy implementation is currently being complemented by intensive staff training, involving simulation of apology scenarios with actor-patients. The article presents an analysis of data collected from such training sessions. The analysis shows how simulated apologising engages frontline staff in evaluating the efficacy of their disclosures, and how staff may thereby be inducted into reconciling their affective and reflexive sensibilities with their organisational and professional responsibilities, and thereby produce the required organisational apology. The article concludes that Open Disclosure, besides potentially relaxing tensions between clinicians and consumers, may also affect how staff experience and enact their role in the overall system of health care organisation.
Abstract: Objective The aim of this two-year prospective study was to examine the relationship between multiple aspects of life-event stress and relapse in multiple sclerosis (MS) patients. Background Few studies have defined the critical features of this life-event stress; for example, stressor duration, frequency, severity, disease-dependency, valency, or stressor constructs, such as the propensity to cause emotional distress/threat or the frustration of life goals. Methods 101 consecutive participants with MS were recruited from two MS clinics in Sydney, Australia. Stressful life events were assessed at study-entry and at three-monthly intervals for two years. Patient-reported relapses were recorded and corroborated by neurologists or evaluated against accepted relapse criteria. Results Acute events, but not chronic difficulties (CDs), predicted relapse occurrence: acute stressor frequency counts predicted greater relapse risk, along with low disability score (EDSS) and being male. We also confirmed the bi-directional stress-illness hypothesis: stressors predicted relapse, and relapse separately predicted stressors. Conclusions Life-event stress impacts to a small degree on MS relapse. The number and not the severity of acute stressors are most important; chronic stressors do not predict later relapse. Males and those with early stage disease are also at greater risk of relapse. MS patients should be encouraged to reduce acute stressors during times of high stress, and feel reassured that disease-related chronic stressors do not increase their relapse risk.
Abstract: Objective The aim of this two-year prospective study was to determine which factors were: (i) directly related and/or (ii) indirectly related to multiple sclerosis (MS) relapse. These factors included life-event stressors, disease, demographic, psychosocial and lifestyle factors. Background Relatively little attention has been paid to the role of non-clinical relapse predictors (other than stressful life-events) in MS, or factors that indirectly impact on the stress-relapse relationship. Methods A total of 101 consecutive participants with MS were recruited from two MS clinics in Sydney, Australia. Stressful life-events, depression, anxiety and fatigue were assessed at study-entry and at three-monthly intervals for two years. Disease, demographic, psychosocial and lifestyle factors were assessed at baseline. Patient-reported relapses were recorded and corroborated by neurologists or evaluated against accepted relapse criteria. Results MS relapse was predicted by acute stressor frequency counts, coping responses that utilized social support, and being born in Australia, but not by chronic stressors, disease, demographic, psychosocial or lifestyle factors. No factors were found to indirectly impact on the stress-relapse relationship. Conclusions The number rather than severity of stressors was most important in relation to MS relapse risk, along with coping responses that utilized social support, suggesting that MS patients should avoid situations that are likely to generate multiple stressors or which provide few avenues for social support.
Abstract: Studies do not provide a consensus opinion of the relationship between stress and relapse in relapsing-remitting multiple sclerosis (RRMS). Few studies have defined the critical features of these stressful situations, or examined the role of stress-mediating and -moderating variables. Available evidence indicates that the relationship between life stress and relapse is complex, and is likely to depend on factors such as stressor chronicity, frequency, severity and type, and individual patient characteristics such as depression, health locus of control and coping strategy use. Little is known about how these factors, individually or in combination, are related to MS disease activity. Viral infections are also likely to precipitate relapse in MS, and significant life-stress may further enhance this relationship. The nature and strength of these interrelationships have strong clinical implications. MS patients are particularly vulnerable to a deteriorating cycle of stressful life events, illness episodes and disability. Timely multidisciplinary care interventions aimed at both minimizing psychological distress and physical symptoms may halt this downward reciprocal cycle. Little is known of the pathogenesis of these putative stress-induced changes in disease activity, and almost all stressor studies suffer from some biases or limitations.
Abstract: There is increasing evidence that effective communication is a critical means by which surgeons can assist their patients to achieve the best outcomes. This paper examines the processes and outcomes of effective communication by surgeons in cancer teams, and includes: (i) strategies that promote collaborative relationships with patients and lead to more effective treatment; (ii) strategies to improve multidisciplinary team performance; and (iii) methods to minimize the risk of error and litigation. The experience of a cancer diagnosis involves radical changes in patients' lives, somewhat akin to suddenly finding yourself in the middle of a rugby scrum for the first time. The analogy of rugby throws fresh light on such critical factors in communication as prematch preparation, orientation to the game and the team, a good kick off, sizing up the opposition, creative plays and optimizing teamwork to promote quality of life and survival.
Abstract: PURPOSE: To assess vision in patients with myopia and myopic astigmatism before and after refractive surgery. METHODS: A prospective controlled study of visual quality amongst myopes and astigmatic myopes. Focus groups, ophthalmic surgeons, and questionnaire experts devised a Subjective Vision Questionnaire (SVQ), modified after a pilot trial. Participants were administered the SVQ before clinical evaluation. Items answered by over 95%, with factor loadings >0.55 were included. Test-retest reliability was assessed by repeat testing. Factor analysis identified groups of questions measuring particular dimensions of data. RESULTS: Sixty-seven items were answered by 128 patients and reduced to 24 items in a final questionnaire. Factor analysis identified six types of questions within the questionnaire, the most important of which was related to driving. CONCLUSION: The simplicity, low cost, and psychometric properties of the Subjective Vision Questionnaire support its use clinically and in research.
Abstract: Poorly controlled pain is a significant problem for cancer patients. Contributing factors may include concerns about analgesics and fears about the implications of pain, which may hinder open communication. We surveyed the prevalence of these concerns in Australian oncology patients and investigated associations with inadequate pain control. Ninety-three adult patients with cancer, undergoing treatment at a teaching hospital, completed the patient barriers questionnaire (BQ) and a self-report questionnaire to determine pain severity, interference with daily activities, use of analgesics and alternative therapies, and hesitation to report pain. Overall, there was a high prevalence of agreement with the BQ scales assessing concerns about communication and analgesic use. One-third of patients had clinically significant pain, which interfered with daily activities, despite use of analgesics. They were more likely to use alternative therapies for pain control, to hesitate to discuss their pain, and had significantly greater concerns about side effects of analgesics and injections. Our study confirms that patient barriers exist in this Australian population and are associated with inadequate pain control. Oncology staff need to actively screen for pain, particularly targeting patients using alternative therapies and experiencing side effects, develop communication and prescribing skills, and diversify pain management approaches beyond analgesics. Copyright (C) 2003 John Wiley Sons, Ltd.
Abstract: 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.
Abstract: The diagnosis and treatment of cancer cause considerable psychological distress and morbidity. Consequently, cancer patients have high needs for informational and emotional support and doctors vary in their ability to recognise and address these needs. This study investigated patients' attempts to gain informational and emotional support through the use of verbal cues. The sample consisted of 298 patients with heterogeneous cancers, seeing one of five medical and four radiation oncologists for the first time. Sociodemographic variables and patient anxiety and satisfaction ratings were obtained. Transcripts of the audiotaped consultations were analysed and question-asking, use of indirect cues, cue type (informational or emotional), content categories in which questions and cues occurred and doctor response (responded to or not responded to), were recorded. Patients asked a median of 11 questions and gave two cues per consultation, usually during treatment discussions. Patients gave, and doctors responded to, more informational than emotional cues. Patients gave significantly more informational cues during longer consultations. Younger and female patients gave more cues for emotional support and asked questions. No demographic variables were associated with the doctors' response to emotional and informational cues; however, consultations in which more informational cues were responded to were shorter, even when controlling for the number of cues given. Satisfaction with the consultation and patient anxiety were unaffected by doctors' responses to cues. Overall, results showed that doctors effectively identify and respond to the majority of informational cues; however, they are less observant of and able to address cues for emotional support. Cues can be addressed without lengthening the consultation or increasing patient anxiety. Copyright (C) 2002 John Wiley Sons, Ltd.
Abstract: Although psychotherapy for cancer patients is known to be effective, there is little in the research to indicate what elements of their therapy patients find most helpful. To explore this question, we interviewed cancer patients diagnosed with metastatic disease who had been offered two different forms of individual psychotherapy as part of a larger funded study. These interviews were then transcribed and analysed using grounded theory. Our aim was to explore patients' psychotherapy experience from their perspective and to determine what common elements in the two approaches they felt were of greatest benefit. Results indicated that patients offered cognitive behavioural therapy had similar experiences to those who received a type of relaxation therapy that included time for non-specific, patient-centred 'chat'. Central to participants' experiences was the opportunity both therapies gave them to enter a relationship in which they could safely share their thoughts and feelings with someone who seemed genuinely interested in understanding their cancer experience and 'truly cared'. These findings suggest that the unique perspectives of cancer patients can add considerably to our understanding of individual psychotherapy in cancer care settings and how this might be improved. Copyright (C) 2001 John Wiley & Sons, Ltd.
Abstract: 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.
Abstract: Purpose: To explore the association at different time points in the trajectory of breast cancer care, between anxiety, knowledge, and attitudes, on women's willingness to participate in randomized clinical trials. Materials and Methods: A cross-sectional survey was undertaken among women attending a breast clinic for screening mammography or diagnostic assessment plus women with newly diagnosed breast cancer to assess attitudes toward and willingness to participate in randomized clinical trials of breast cancer treatment. Results: Five hundred forty-five women completed questionnaires assessing knowledge of and attitudes toward randomized clinical trials. The mean age of respondents was 48.9 years (SD, 11.3 years). Thirty-three percent of women would consider participating in a clinical trial if they had breast cancer. Women with breast cancer (31%) were significantly more likely to decline to participate than women attending for screening mammography (15%) or diagnostic assessment (15%, P = .0002). Women who might consider participating in a randomized clinical trial were more knowledgeable about randomized trials (mean difference, 0.7, 95% confidence interval [CI], 0.2 to 1.2; P = .003). In a multivariate analysis, women who would consider participating in a randomized trial were younger (odds ratio [OR], 0.96; 95% Cl, 0.93 to 0.99), more likely to want an active role in decision-making (OR, 3.2; 95% Cl, 1.3 to 7.6), and reported a greater impact from the positive aspects of clinical trials (OR, 2.2; 95% Cl, 1.3 to 3.8) and less impact from the negative aspects of clinical trials (OR, 2.2; 95% Cl, 1.3 to 3.2). Conclusion: These findings suggest that women who have a better understanding of issues about clinical trials have more favorable attitudes toward randomized trials and are more willing to consider participation in a clinical trial.
Abstract: Research interest in psychosocial predictors of the onset and course of cancer has been active since the 1950s. However, results have been contradictory and the literature is noted for methodological weaknesses. In this prospective study we aimed to systematically obtain data on psychosocial factors thought to be associated with cancer outcome in early-stage breast cancer. Consecutive patients with early-stage breast cancer seen for the first time for ongoing treatment at a major teaching hospital in Sydney participated in the study. Exclusion criteria included inability to speak English and co-existing psychiatric illness. Participants completed a series of questionnaires every 3 months for up to 2 years following their diagnosis. Domains measured included cognitive appraisal of threat, coping, psychological adjustment, social support, quality of life and perceived aim of treatment. Disease and demographic data were obtained from medical records. including age. marital status. education and occupational status, treatment received, menopausal status. tumour size and grade. 233 patients agreed to participate in the study and 211 (88%) had sufficient data for analysis. Patients were a mean age of 51 years; 84% of the sample were Australian-born; 25% of the sample had a University education and 39% were in managerial or professional occupations. 59% had chemotherapy following surgery and 54% were taking tamoxifen. Women entered the study a median of 91 days since diagnosis. 30 (14%) of the 211 women died within the study period and 36 (17%) relapsed. Multivariate analysis of baseline measures only, used the Cox proportional hazards model. Two psychosocial factors independently predicted both survival and time to relapse. Apart from disease variables. three non-medical factors remained in both of the final models: appetite, concern about dependence and concern about the disease. Patients who had high levels of concern about the disease and low levels of concern about dependence survived for a significantly shorter time (Hazard Ratio (HR) 1.04. 95% CI = 1.01-1.06: HR = 0.96, 95% Cl = 0.94-0.99) and relapsed quicker (HR 1.03, 95% Cl = 1.0 1-1.06; HR = 0.96 95% CI = 0.93-0.98). Concern about the disease was also predictive of outcome in primary melanoma patients, but the directional effect was opposite: that is. patients with a higher concern about their disease did better. Perhaps patients with early melanoma are mobilized by their concern to take active seif-protective measures which can have a real impact on their disease (such as staying out of the sun), whereas similar self-protective strategies are not available to patients with early breast cancer. Alternatively, concern about the disease may reflect medical factors in breast cancer which we did not record. Interestingly, the coping response of minimization, which was significantly predictive of outcome in our metastatic breast cancer sample. was not significant in this population. It is likely that different coping styles are salient and predictive of outcome at different stages of disease. There is still much to learn about the potential relationships between psychological wellbeing, human behaviours and cancer outcome. Research in this area needs to clarify the psychological processes themselves as well as understand the biological and/or behavioural mechanisms that may link them to outcome. (C) 2001 Harcourt Publishers Ltd.
Abstract: Patient participation in medical consultations has been demonstrated to benefit their subsequent psychological well being. Question asking is one way in which patients can be active. We investigated 2 means: of promoting cancer patient question asking. One was the provision of a question prompt sheet to patients prior to their initial consultation with their oncologist. The second was the active endorsement and systematic review of the question prompt sheet by their oncologist 318 patients with heterogeneous cancers, seeing one of 5 medical and 4 radiation oncologists for the first time, were randomised to either receive or not receive a question prompt sheet. Doctors were randomised to either proactively address or passively respond to the question prompt sheet in the subsequent consultation. Anxiety was assessed prior to the consultation. Consultations were audiotaped and content analysed. Anxiety was assessed again immediately following the consultation. Within the next 10 days patients completed questionnaires assessing information needs, anxiety and satisfaction and were given a structured telephone interview assessing information recall. Patients provided with a question prompt sheet asked more questions about prognosis compared with controls and oncologists gave significantly more prognostic information to these patients. Provision of the question prompt sheet prolonged consultations and increased patient anxiety; however, when oncologists specifically addressed the prompt sheet, anxiety levels were significantly reduced, consultation, duration was decreased and recall was significantly improved. A patient question prompt sheet, used proactively by the doctor, is a powerful addition to the oncology consultation. (C) 2001 Cancer Research Campaign.
Abstract: BACKGROUND. The authors conducted the current study to determine whether personality predisposes some individuals to develop cancer. METHODS. The current study examined the role of personality variables in 2224 older women recalled for assessment after routine mammography in a breast screening program. Using a semiprospective design, subjects completed self-report measures of defense style, locus of control, emotional expression and control, self-esteem trait anxiety, and state anxiety and depression while waiting for medical examination. Multivariate analysis of variance was used to control for known risk factor variables and to examine differences between 3 control groups (normal tissue controls, benign/cystic controls not requiring biopsy, and benign biopsy controls) and 298 breast carcinoma subjects. RESULTS. No differences were detected between breast carcinoma subjects and controls based on measures of mature, immature, and neurotic defense style; locus of control of behavior; emotional expression-in, emotional expression-out, and emotional control; self-esteem; anxiety; or depression. CONCLUSIONS. The results of the current study found no evidence to support an independent association between these personality measures and the development of breast carcinoma. (C) 2001 American Cancer Society.
Abstract: BACKGROUND. The evidence supporting an association between life event stress and breast carcinoma development is inconsistent. METHODS. Five hundred fourteen women requiring biopsy after routine mammographic breast screening were interviewed using the Brown and Harris Life Event and Difficulties Schedule. Other psychosocial variables assessed included social support, emotional control, and defense style. Biopsy results identified 239 women with breast carcinoma and 275 women with benign breast disease. Multiple logistic regression analysis was used to distinguish between breast carcinoma subjects and benign breast disease controls based on these psychosocial variables and their interactions. RESULTS. The findings of the current study revealed a significant interaction between highly threatening life stressors and social support. Women experiencing a stressor objectively rated as highly threatening and who were without intimate emotional social support had a ninefold increase in risk of developing breast carcinoma. CONCLUSIONS. Although there was no evidence of an independent association between life event stress and breast carcinoma, the findings of the current study provided strong evidence that social support interacts with highly threatening life stressors to increase the risk of breast carcinoma significantly. (C) 2001 American Cancer Society.
Abstract: Genetic testing has been available for Huntington's disease for longer than any other adult onset genetic disorder. The discovery of the genetic mutation causing Huntington's disease made possible the use of predictive testing to identify currently unaffected carriers. Concerns have been raised that predictive testing may lead to an increase in deaths by suicide among identified carriers, and these concerns set in motion research to assess the psychological impact of predictive testing for Huntington's disease. This review article provides an overview of the literature and draws implications for clinical practice. About 10%-20% of people at risk request testing when approached by registries or testing centres. Most of the evidence suggests that non-carriers and carriers differ significantly in terms of short term, but not long term, general psychological distress. Adjustment to results was found to depend more on psychological adjustment before testing than the testing result itself Although risk factors for psychological sequelae have been identified, few adverse events have been described and no obvious contraindications for testing people at risk have been identified. The psychological impact of testing may depend on whether testing was based on linkage analysis or mutation detection. Cohorts enrolled in mutation detection programmes have higher levels of depression before and after testing, compared with people who sought genetic testing when Linkage analysis was available. There is evidence that people who choose to be tested are psychologically selected for a favourable response to testing. The impact of testing on people in settings where less intensive counselling protocols and eligibility criteria are used is unknown, and genetic testing is therefore best offered as part of comprehensive specialist counselling.
Abstract: This study explored psychosocial predictors of relapse and survival in early stage melanoma patients. Patients with locoregional melanoma whose tumour thickness exceeded 0.69 mm, seen at the Sydney Melanoma Unit between 1991 and 1996 participated in the study. Questionnaires were sent to participating patients every 3 months for 2 years. Domains measured included cognitive appraisal of threat, coping, psychological adjustment, quality of life and perceived aim of treatment. Disease and demographic data were obtained from medical records. Multivariate analyses from baseline data used the Cox proportional hazards model. Of the 682 patients invited to participate 426 (62%) agreed. 91 (21%) relapsed and 60 (14%) died within the follow-up period, that ended in October 1997. After controlling for known prognostic indicators, several psychosocial variables predicted time to relapse and/or survival duration. Patients who perceived their aim of treatment to be cured, who did not use avoidance as a coping strategy or who were concerned about their disease experienced longer periods without relapse. Shorter survival duration was associated with a positive mood, the use of avoidance as a coping strategy, not being concerned with their disease and concern about the impact of the disease on family. There is still much to learn about the potential relationships between psychological well being, human behaviours and cancer outcome. Research in this area needs to clarify the psychological processes, as well as understand the biological and/or behavioural mechanisms that may link them to outcome. (C) 2000 Cancer Research Campaign http://www.bjcancer.com.
Abstract: Background: Research interest in psychosocial predictors of the onset and course of cancer has been active since the 1950s. Recently we reported associations between psychological factors and survival in patients with metastatic melanoma. We now report a replication of this study in a sample of women with metastatic breast cancer. Patients and methods: Ninety-nine patients with metastatic breast cancer completed questionnaires measuring cognitive appraisal of threat, coping, psychological adjustment, perceived aim of treatment, social support and quality of life, approximately four months after diagnosis. Survival was measured from date of study entry to date of death or censored at the date of last follow-up for surviving patients. Results: In a multivariate analysis, four factors independently predicted outcome. Patients with metastases in the liver, lung or pleura survived for a shorter duration (P < 0.001); older patients (P < 0.001) and those with a better appetite (P < 0.05) also lived for a shorter time. Patients who minimised the impact of cancer survived longer (a median of 29.1 vs. 23.9 months after study entry, P < 0.01). Conclusions: Minimisation was also significantly associated with outcome in patients with metastatic melanoma who participated in an identically designed study, reported elsewhere. This suggests that minimisation may have a general impact on cancer progression and deserves closer scrutiny in other cancers.
Abstract: Background: Quality of life (QOL) assessment is an important component within cancer research. There is often variability in QOL scores both between patients and across time. Understanding this variability in terms of personal characteristics and psychosocial factors would be useful but is often obstructed by the types of analyses that are applied to longitudinal data sets. Improved understanding can be gained with the application of multi-level or hierarchical models that allow for greater flexibility for modelling individual patterns of change over time. Methods and patients: Questionnaires were sent to a cohort of stage IV melanoma patients seen at the Sydney Melanoma Unit between 1991 and 1996, approximately every 3 months for up to 2 years. The data reported here are from a sub-sample of 44 patients who each completed between 3 and 8 questionnaires. Three aspects of QOL were measured (effort to cope, mood and physical well-being), each with a single LASA line. Multilevel techniques were used to model the patterns of QOL over time. Covariates were added to explain variation between patients in their average QOL and change in QOL over time. Results: The scores of each of the three QOL measures showed marked fluctuations over time. However, there was little systematic change during the study in either effort to cope (p = 0.32) or mood (p = 0.06). In contrast, the physical well-being scores of some patients improved while others deteriorated (p < 0.001). On average, physical well-being deteriorated (p < 0.001). Variability between patients accounted for 60% (effort to cope), 45% (mood) and 44% (physical well-being) of the total variance of each scale. A range of psycho-social factors including active and avoidant coping styles and psychological adjustment accounted for significant amounts of the variability between patients in each QOL measure. Conclusion: Individual coping and psychological adjustment are related to individual changes in QOL and to differences among patients' QOL. The study illustrates the use of multi-level techniques to further our understanding of differences between patients in their QOL and how it changes over time.
Abstract: Background. Few longitudinal studies have concurrently investigated cognitive appraisal, coping and psychological adjustment in patients with terminal cancer. This study aimed to (i) consider patterns of change in these;variables during the last year of life and (ii) consider covariates associated with patients' psychological adjustment. Methods and patients: Questionnaires were sent to a cohort of stage IV melanoma patients seen at the Sydney Melanoma Unit between 1991 and 1996, approximately every 3 months, for up to 2 years. A sub-sample of 110 patients completed at least one questionnaire in the last year of life. Repeated measures linear regression was used to model cognitive appraisal, coping and psychological adjustment. Results: In the last year of life, patients' cognitive appraisal of their disease remained relatively stable, whereas their use of active coping strategies increased (p = 0.04). There was some deterioration in psychological adjustment, particularly in patients' ability to minimize the impact of cancer on daily life (p = 0.03), but this effect did not remain significant when patients' level of tiredness was included in the model. Cognitive appraisal, coping style and quality of life indicators were all associated with psychological adjustment. Conclusion: These findings suggest that while patients work hard to actively cope with their disease, they experience increasing levels of tiredness, and deterioration in their mood and ability to function in their daily lives. Copyright (C) 2000 John Wiley & Sons, Ltd.
Abstract: Objective: Although doctor-patient communication has been the focus of numerous studies, there is a lack of empirical evidence on which to base a curriculum for teaching effective communication skills for use in an oncology setting. Research within the general practice area identifies patient-centred and doctor-centred behaviours as the most important dimensions of doctor-patient communication. This study examined patients and their relatives/friends' preferences for and satisfaction with patient-centred and doctor-centred consulting styles. It was argued that by determining patient preferences for consulting styles, specific recommendations for improving communication in the oncology setting could be formulated. Participants and Methods: One hundred and thirteen women who had been treated for breast cancer and 48 of their relatives or friends watched videotaped scenarios of an oncology consultation, using professional actors. Viewers were randomly allocated to either a good prognosis or poor prognosis video, in which the oncologist discussed the patient's diagnosis, treatment and prognosis. These segments were presented in both styles to allow viewers to directly compare and contrast the patient-centred and doctor-centred approach. Outcomes included style preference and satisfaction. Demographic details, information and involvement preferences, anxiety and depression levels were also obtained. Results: Both patients and their relatives or friends significantly preferred a patient-centred consulting style across all aspects of the consultation (p < 0.0001), except within the treatment segment of the good prognosis video where there was no significant difference. One third of the viewers preferred a doctor-centred style for the treatment and prognosis segments. Predictors of a patient-centred style preference in the treatment and prognosis segments included watching a poor prognosis video (OR = 2.45, 95% CI 1.04-5.81, p = 0.04; OR = 3.22, 95% CI 1.22-8.50, p = 0.02, respectively), and being employed in a professional occupation (OR = 2.38, 95% CI 1.02-5.53, p = 0.04 for the treatment segment only). Satisfaction ratings varied within and across videos. Conclusion: Despite some methodological limitations, this study provides empirical data indicating that patients and their relatives or friends prefer a patient-centred approach to the consultation, particularly when the patient has a poor prognosis. The fact that a substantial minority of patients preferred a doctor-centred style emphasizes the need to enhance physicians' abilities to recognize different patient needs throughout the consultation. Copyright (C) 2000 John Wiley & Sons, Ltd.
Abstract: Background: Established risk factors are associated with between 25 and 56% of breast cancer cases, but the relative importance and relevance to different age groups is unclear. Methods: This case-control study examines established risk factors in 298 women with breast cancer and 1926 women without breast cancer aged 40-87 who were recalled for assessment following routine mammography. Results: The cancer group were significantly older than the non-cancer group (F-1,F-222 = 107.6; P<0.0001). Postmenopausal obesity increased the odds of developing breast cancer (OR: 2.35; CI: 1.33-4.16). The breast cancer group were more likely to have used oral contraceptives (OR: 1.50; CI: 1.09-2.05), and women who used contraceptives for more than 10 years in total were at the highest risk (OR: 1.73; CI: 1.13-2.65). Daily consumption of alcohol was also associated with increased risk of developing breast cancer (OR: 1.62; CI: 1.13-2.33). Reproductive factors and a family history of breast cancer did not affect the odds of developing breast cancer and the reasons for these findings are explored. Conclusions: Results suggest that the effects of weight reduction in reducing postmenopausal breast cancer risk should be assessed.
Abstract: Objective: A number of European and Northern American studies have investigated a possible association between dissociative phenomena, eating disorders, child sexual abuse and self-mutilation. However, there has been little confirmation from other countries and cultures, and the Australian experience of these interrelationships has not previously been studied. Method: Dissociative symptomatology and self-reported history of abusive experiences, physical and sexual, were retrospectively studied in a sample of Australian eating disordered patients using a self-report measure, the Dissociation Questionnaire (DIS-Q). Results: As hypothesised, dissociative Symptoms were particularly frequent in those who reported child and adult sexual abuse and in those who self-mutilated. A correlation between multiple forms of abuse and higher dissociation scores was only partially upheld. Conclusions: Interrelationships between victimisation and dissociation are discussed within the context of current knowledge in the field, and brief suggestions for therapeutic strategies are offered.
Abstract: Purpose: Research interest in psychosocial predictors tars Of the onset and course of cancer has been active since the 1950s, However, results have been contradictory and the literature is noted for methodologic weaknesses, In this prospective study, we aimed to systematically obtain data on psychosocial factors associated with human response to illness. Patients and Methods: One hundred twenty-five patients with metastatic melanoma completed questionnaires measuring cognitive appraisal of threat, coping, psychologic adjustment, perceived aim of treatment, social support, and quality of life (QOL). Questionnaires were completed, where possible, every 3 months for 2 years after diagnosis. Survival was measured from date of study entry to date of death or was censored at the date of last follow-up for surviving patients. Results: In a multivariate Cox regression analysis of baseline data, which controlled for demographic and disease predictors, the psychologic variables of perceived aim of treatment (P < .001), minimization (P < .05), and anger (P < .05) were independently predictive of survival, Patients who were married (P < .01) and who reported a better QOL (P < .05) also survived longer. Conclusion: The prognostic significance of psychologic and QOL scores remained after allowance for conventional prognostic factors. If these associations reflect an early perception by the patient or doctor of disease progression, then measures are at least valuable early indicators of such progression. If psychologic processes have a more direct influence on the course of the underlying illness, then it may be! possible to manipulate them for therapeutic effect. We are now conducting a randomized controlled trial of a psychologic intervention to further elucidate these issues. (C) 1999 by American Society of Clinical Oncology.
Abstract: Aim: We aimed to document the prevalence of misunderstanding in cancer patients and investigate whether patient denial is related to misunderstanding. Patients and methods. Two hundred forty-four adult cancer outpatients receiving treatment completed a survey assessing levels of understanding and denial. Doctors provided the facts against which patient responses were compared. Multiple logistic regression analyses determined the predictors of mis understanding. Results: Most patients understood the extent of their disease (71%, 95% CI: 65%-77%) and goal of treatment (60%, 95% CI: 54%-67%). Few correctly estimated the likelihood of treatment achieving cure (18%, 95% CI: 13%-23%), prolongation of life (13%, 95% CI: 8%-17%) and palliation (18%, 95% CI: 10%-27%). Patient denial predicted misunderstanding of the probability that treatment would cure disease when controlling for other patient and disease variables (OR = 2.20, 95% CI: 0.99-4.88, P = 0.05). Patient ratings of the clarity of information received were also predictive of patient understanding. Conclusions. Patient denial appears to produce misunderstanding, however, doctors' ability to communicate effectively is also implicated. The challenge that oncologists face is how to communicate information in a manner which is both responsive to patients' emotional status and sufficiently informative to allow informed decision-making to take place.
Abstract: Background: Doctors' discomfort with the randomized trial process may significantly impact on accrual rates to clinical trials. However, there is little information regarding factors that influence accrual to clinical trials in Australia. The present study examines Australian cancer specialists' attitudes towards and participation in current boast cancer clinical trials. Methods: All medical and radiation oncologists across Australia and surgeons listed as participants in the Australian and New Zealand Breast Cancer Trials Group were sent questionnaires assessing attitudes towards and participation in current clinical trials for early stage breast cancer. Results: The response rate was 71% (269/381). The mean age of respondents was 45 years and 85% were male. Respondents estimated that a mean of 5.2 (SD = 8.2) of their patients had been enrolled in a boast cancer clinical trial in the previous 12 months. Participation (in any trial) by medical oncologists (60.6%, 95%CI54.5-66.7%) and surgeons (63.1% : 95%CI 57.1-69.1%) was significantly higher than for radiation oncologists (43.2%, 95%CI 37-49.4%, P = 0.03). The major barriers to participation in current breast cancer trials were lack of resources (44%) or issues related to specific trials (44%; e.g, relevance of the research questions or choice of standard therapies). Conclusions: The results of this study suggest that efforts to improve doctors' participation in clinical trials need to address a number of issues. More empirical research is needed to evaluate new strategies to raise participation in clinical trials.
Abstract: A cross-sectional survey of all medical and radiation oncologists in Australia was undertaken, plus surgeons listed as participants of the ANZ Breast Cancer Trials Group, to examine whether doctors' participation in randomized trials of adjuvant systemic therapy for breast cancer, is associated with their recommendations for adjuvant therapy in two clinical scenarios. Two-hundred and sixty-nine questionnaires were returned (response rate 71%). Fifty-six per cent of respondents, were participating in current adjuvant systemic therapy trials. Radiation oncologists were significantly more likely than surgeons or medical oncologists to recommend radiotherapy, while medical oncologists and surgeons were significantly more likely than radiation oncologists to recommend chemotherapy, in both clinical scenarios. In a multivariate analysis adjusting for the differences between specialist groups, respondents recommending chemotherapy were more likely to be high accruers to clinical trials (OR 3.6, 95%CI 0.93 to 13.9, P=0.08) in scenario 1, or participants of a breast cancer trials organization (OR 3.1, 95%CI 1.6 to 5.9, P=0.001) in scenario 2. Some of the variation in adjuvant systemic therapy recommendations is associated with participation in adjuvant systemic therapy trials. However, this study is unable to determine if trial participation influences opinions about adjuvant therapy, or opinions influence trial participation. (C) 1999 Harcourt Publishers Ltd.
Abstract: Background: Established risk factors are associated with between 25 and 56% of breast cancer cases, but the relative importance and relevance to different age groups is unclear. Methods: This case-control study examines established risk factors in 298 women with breast cancer and 1926 women without breast cancer aged 40-87 who were recalled for assessment following routine mammography. Results: The cancer group were significantly older than the non-cancer group (F-1,F-222 = 107.6; P<0.0001). Postmenopausal obesity increased the odds of developing breast cancer (OR: 2.35; CI: 1.33-4.16). The breast cancer group were more likely to have used oral contraceptives (OR: 1.50; CI: 1.09-2.05), and women who used contraceptives for more than 10 years in total were at the highest risk (OR: 1.73; CI: 1.13-2.65). Daily consumption of alcohol was also associated with increased risk of developing breast cancer (OR: 1.62; CI: 1.13-2.33). Reproductive factors and a family history of breast cancer did not affect the odds of developing breast cancer and the reasons for these findings are explored. Conclusions: Results suggest that the effects of weight reduction in reducing postmenopausal breast cancer risk should be assessed.
Abstract: The use of unproven therapies is of concern for a number of reasons, including the lack of scientific evidence to support them, their potential financial costs and the possibility of interference with conventional treatment. This study explored the prevalence, predictors and experiences of unproven therapy use by cancer patients attending an oncology clinic at an Australian teaching hospital. A questionnaire was administered to patients whilst they were waiting for a consultation with their oncologist. A total of 173 patients were invited to participate, and 156 consented to complete the survey (90%). Over half the patients (81, 52%) had used at least one unproven therapy since their diagnosis, and 28% had used three or more. Patients most commonly practised meditation/relaxation, changed their diet and used multivitamins. Most expected that the therapies would aid their conventional treatments and make them feel more in control of their situation, Benefits reported were largely psychological, such as an increased sense of control or a reduction in anxiety. Younger patients, those with early stage or advanced metastatic disease and those who had used unproven therapies prior to developing cancer were more likely to use unproven therapies. Health professionals involved in the care of cancer patients should be prepared to discuss the use of unproven therapies and try to identify and deal with unmet needs to help patients to cope with their illness.
Abstract: GH treatment in adults with GH deficiency has numerous beneficial effects, but most studies have been small. We report the results of an Australian multicenter, randomized, double-blind, placebo-controlled trial of the effects of recombinant human GH treatment in adults with GH deficiency. GH deficiency was defined as a peak serum GH of <5 mU/liter in response to insulin-induced hypoglycemia. Patients were randomly assigned to receive either GH (0.125 U/kg per week for 1 month and 0.25 U/kg per week for 5 months) or placebo. After 6 months, all patients received GH. The primary end points were biochemical responses, body composition, quality of life, and safety. One hundred sixty-six patients (72 females and 91 males) with a mean age of 40 +/- 1 yr (+/-SEM; range 17-67 yr) were recruited. Serum insulin-like growth factor-I (IGF-I) increased from a standard deviation score of -2.64 +/- 0.27 (range -8.8 to +3.82; n = 78) to +1.08 +/- 2.87 (range -7.21 to +6.42) at 6 months in the GH/GH group; 38% of the whole group were above the age-specific reference range following treatment [17.6% and 68.9% with subnormal (<2 SD) or normal (+/-2 SD) pretreatment levels, respectively]. Fasting total cholesterol (P = 0.042) and low-density lipoprotein cholesterol (P = 0.006) decreased over the first 6 months. Fat-free mass increased in the first 6 months whether measured by bioelectrical impedance (P < 0.001) or dual energy x-ray absorptiometry (DEXA; P < 0.001). Total-body water increased in the first 6 months whether measured by bioelectrical impedance (P < 0.001) or deuterium dilution (P = 0.002). Fat mass measured by DEXA (P < 0.001), skinfold thicknesses (P < 0.001), and waist/hip ratio (P = 0.001) decreased in the first 6 months. Most changes in body composition were complete by 3 months of treatment and maintained to 12 months. Whole-body bone mineral density (BMD) (by DEXA) was unaffected by GH treatment. Self-reported quality of life was considered good before treatment, and beneficial treatment effects were observed for energy, pain, and emotional reaction as assessed by the Nottingham Health Profile. In the initial 6 months, adverse effects were reported by 84% of patients in the GH and 75% in the placebo group, with more symptoms relating to fluid retention in the GH group (48% vs. 30%; P = 0.016). Such symptoms were mild and resolved in 70% of patients despite continued treatment. Resting blood pressure did not change over the initial 6 months. In summary, GH treatment in adults with GH deficiency resulted in 1) prominent increases in serum IGF-I at the doses employed, in some cases to supraphysiological levels; 2) modest decreases in total-and low-density lipoprotein cholesterol, together with substantial reductions in total-body and truncal fat mass consistent with an improved cardiovascular risk profile; 3) substantial increases in lean tissue mass; and 4) modest improvements in perceived quality of life. The excessive IGF-I response and side-effect profile suggest that lower doses of GH may be required for prolonged GH treatment in adults with severe GH deficiency.
Abstract: We describe five phases of research desired to refine the psychometric properties of the PAC, a measure of psychological adjustment in cancer patients. PAC items were originally generated by modification of an existing diabetes instrument, and item discrimination examined differences between 91 cancer patients and 173 age-matched patients with diabetes. Cancer was considerably more stressful than diabetes but patients reported a similar range of qualitative responses. Focus group techniques were used to further refine the item set. A series of analyses in different samples identified six relatively stable factors and a Cronbach's alpha of 0.74-0.86. The test-retest correlation for the total PAC score was 0.92 and convergent validity was shown by a consistent pattern of association with criterion measures. In a randomised controlled trial, total PAC scores were shown to be sensitive to experimental manipulations of the medium, message, and context of cancer terminology. A factor replication study of the 53-item scale in a sample of 283 patients with melanoma resulted in a shorter 21-item, two-factor scale with superior psychometric properties.
Abstract: Objective: To determine the reported rates of child physical and sexual abuse experienced by hospitalised eating disordered patients compared to a control group of women attending general practitioners. Method: A retrospective survey using the self-report Finkelhor Sexual Life Events Inventory and clinical reports. Results: Nearly one-half of eating disordered patients reported a history of child sexual abuse and one-quarter reported child physical abuse, These rates were significantly higher than those reported by the control group. Conclusions: Direct questioning regarding trauma histories is warranted when assessing patients with eating disorders and attention to such issues should be incorporated into the total management plan.
Abstract: Background: Low scores on satisfaction measures may be anticipated when patients' expectations of the doctor are unmet during the cancer consultation. We correlated discrepancies between patient expectations of their ideal doctor and their perceptions of their actual doctor with scores on a validated satisfaction scale to determine whether patients whose expectations were unmet were less satisfied. Patients and methods: The expectations questionnaire used a forced choice method designed to elicit patient preferences for either emotional or informational support from the physician. One hundred and five new patients with heterogeneous cancers, of five medical oncologists at a major teaching hospital were sampled. The patients were mostly female (55%) middle aged (mean age 54.3) and newly diagnosed with cancer (56% within two months prior to consultation). Results. Patients did not demonstrate a clear preference for an emotionally or informationally supportive approach. Seventy percent of patients did not want emotionally negative physicians ut most (88.4%) would tolerate negative information. The mean number of exact matches between patients expectations of the ideal and their perceptions of their actual doctor was 3.7 (from a total of six). 5.9% of patients received exactly the doctor they wanted. No significant differences in satisfaction were found between patients whose expectations were met and those whose expectations were not met. Conclusions. Patient satisfaction with the consultation was independent of patient expectation for informational or emotional support.
Abstract: Background. While the importance of providing individualised communication to cancer patients is now well recognised, little is known about the stability and validity of patients' expressed preferences for information and involvement in decision-making. This study explored the stability and possible predictors of such preferences over time. Patients and methods. Cancer patients seeing two Medical Oncologists in an out-patient clinic at an Australian teaching hospital completed a questionnaire battery before and directly after one consultation, and before their next consultation. Eighty consecutive patients with heterogeneous cancers participated in the study. Preferences for general and specific information, involvement and support were elicited at each assessment. Locus of control and patient familiarity with the clinic were measured before the first consultation. Patient satisfaction with the consultation was assessed directly after the consultation. Demographic and disease data were recorded for each patient. Results. General preferences for information and involvement were relatively stable, at least in the short term; however there was considerable variability in preferences for specific topics of information. Patients whose condition had recently worsened were more likely to want progressively less involvement in decision-making. Gender, the doctor seen and religion were also predictive of patient preferences. Conclusions: Situational factors, such as change in disease status, may alter a patient's preferences for information and involvement. If we wish to match the provision of information and support to the expressed needs of patients, we must ask patients at each consultation what those needs are.
Abstract: The University of Sydney is developing a four-year graduate-entry medical program to commence in 1997. The program is built on Sour curriculum themes: Basic and Clinical Sciences, the Patient and the Doctor, the Community and the Doctor mid Personal and Professional Development (P&PD). The Personal and Professional Development (P&PD) Theme covers health law and ethics, medical humanities, personal and professional skills, critical appraisal (evidence-based medicine) and al optional/elective activities. The aims for the P&PD theme are the basis Sor all student assessment in Year 1. Assessment is designed to encourage students' responsibility Sor evaluating their own learning and planning future approaches to learning in the Inter years of the course.
Abstract: Background: A study conducted in 1983 to identify and rank the symptoms experienced by patients receiving cancer chemotherapy reported that vomiting; and nausea were the most important symptoms experienced. With the advent of new antiemetic regimens and changes in cancer chemotherapy, it was anticipated that changes may have occurred in patient perception of symptoms. The study was therefore repeated in 1993. Patients and methods: One hundred and fifty-five cancer patients receiving chemotherapy at a large urban teaching hospital participated in the study. Patients selected from cards listing symptoms all those experienced and the five most troublesome. Results: Patients reported experiencing an average of 20 symptoms (13 physical and 7 psychosocial). Nausea was reported as the most severe symptom followed by tiredness and loss of hair. Vomiting, which was the most severe symptom in 1983, now ranked 5th. Differences were detected in the symptoms experienced and reported as most severe, between chemotherapy regimens, between older and younger patients and between males and females. Conclusions: The results suggest a reduction in the severity of some symptoms experienced while receiving chemotherapy and a shift from concerns about physical to psychosocial issues.
Abstract: 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.
Abstract: 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 canter 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. (C) 1996 American Cancer Society.
Abstract: Patient education and chronic illness are linked inextricably in the training of health care providers as we move to the year 2000. However, professional training remains organised around the traditional clinical interview with its focus on acute illness. Research into aspects of the health care consultation is well advanced, but we are only just beginning to understand the implications of the long-term interaction between patient and provider in the management of illnesses which cannot be cured. The challenges for health care providers are: to relinquish control of the consultation when it is appropriate; to be aware of the human biases affecting clinical judgment; to develop a professional approach to the human aspects of their relationships with patients and other professionals as part of a management team; and to focus on the longer term relationship and long-term benefit to the patient.
Abstract: Aim. This study examines the relationship between anxiety, psychological state and Human Immunodeficiency Virus (HIV) stages as defined by the Centers for Disease Control at the time of initial screening for HIV in a cohort of people with haemophilia who were at risk of prior exposure to HIV transmission from blood products. Method. Psychological scores, immunological measures, and clinical data from case notes for 116 potentially HIV exposed people with haemophilia attending initial screening for HIV infection in 1984-1985, were used to examine the relationship between psychological variables, clinical state and their clinical classification under the Centres for Disease Control categorization. Psychometric test results were obtained for 63 HIV seronegative patients and 53 HIV seropositive patients. Planned comparisons, multiple and logistic regressions, were used to explain observed differences between seronegative and seropositive subjects. The potential confounders of sex, age, severity of haemophilia, haemophilia type and blood product usage were controlled. Results. The major finding of this study was that higher levels of State Anxiety at the time of initial screening for HIV, were observed in those patients who lacked recognized symptoms of HIV infection and were seropositive, compared with seronegative subjects. The State Anxiety scores were predicted by HIV infection or alternatively CD4(+) T-cell levels. Conclusion. The findings of this study suggest that HIV infection can produce psychological effects prior to any physical symptoms of infection being apparent.
Abstract: There are few data available on which to base recommendations for effective communication in the cancer consultation. This paper describes a computerised interaction analysis system designed specifically for the cancer consultation and its application in a study investigating the relationship between doctor-patient behaviour and patient outcomes. One hundred and forty-two cancer patients attending their first consultation with a cancer specialist were audio taped and a copy of the tape was retained for interaction analysis. Before the consultation patient anxiety and information and involvement preferences were measured. Outcomes included recall of information, patient satisfaction with the consultation and psychological adjustment to cancer. Doctor behaviour was shown to vary significantly according to the age, sex, involvement preferences and in/out-patient status of the patient. The ratio of doctor to patient talk was related to satisfaction with communication, while patients whose questions were answered showed better psychological adjustment at follow-up. The results suggest that patient-centred consultations lead to improved satisfaction and psychological adjustment. These data provide precise information about consultation behaviour which can be used in the documentation of current practice and the evaluation of new interventions to improve communication.
Abstract: Background: There are no Australasian data on the preferred information content of letters from consultant physicians to referring doctors. Aims: To survey referring general practitioners (GPs) and specialists concerning their preferences for letters from a consultant physician after a new patient consultation to include different categories of information. To investigate the information content of letters written by one medical oncologist to referring doctors after a new patient consultation and contrast with that of individualised letters written to patients. Methods: Fifty-five referring GPs and 53 specialists were sent a questionnaire seeking their views on the information content of letters from consultant physicians. Ninety-four letters after a new patient consultation were selected at random and analysed for their information content, and compared with 182 individualised letters sent to patients. Results: Referring doctors wanted letters to contain details of diagnosis, clinical findings, test results and recommended future tests, treatment options, side effects and prognosis. Letters to referring doctors contained 19 items of information (range 8-33), while letters to patients contained a mean of 5.6 'salient' points (range 5-7). Both letters almost always stated the diagnosis, the presenting history and recommended treatment. Letters to patients more commonly presented information about prognosis, further tests, and explanation of symptoms than letters to doctors. In contrast, letters to referring doctors contained more information concerning the past medical, family, and drug history, clinical findings and test results. Conclusions: Letters sent by a consultant oncologist are not well tailored to the information needs of the referring clinician. Summary letters sent to patients may be modified to include information required by referring doctors.
Abstract: Background: Active participation and asking questions are important ways in which patients can ensure they understand what the doctor has said. This study evaluated a question prompt sheet designed to encourage patients to ask questions in the cancer consultation. Patients and methods: Patients (n = 142) were randomised to receive (i) a question prompt sheet or (ii) a general sheet informing patients of services available through the regional Cancer Council. Recall of information was assessed in a structured interview 4-20 days after the consultation. Questionnaires to assess patient satisfaction and adjustment to cancer were sent by mail. Results: The question prompt sheet had a significant effect in one content area: prognosis. Thirty-five percent of patients who received the question handout asked questions about prognosis compared to 16% of those receiving the information handout. The prompt sheet did not increase the mean number of questions asked overall. Age, in/out-patient status, gender and involvement preference were predictive of both number and duration of patient questions. Conclusions: A question prompt sheet has a limited but important effect on patient question asking behaviour in the cancer consultation.
Abstract: In assessing the effectiveness of management strategies for patients with asthma, it is important to measure outcomes which are relevant to the concerns of patients. Quality of life is one such outcome which may not be adequately reflected in lung function measurements. We have developed an asthma quality of life questionnaire (the AQLQ) for this purpose. The aim of this study was to test the validity and responsiveness of the AQLQ as a measure of change. Forty four adults with asthma were assessed on two occasions 4 months apart. On each occasion subjects completed the AQLQ and the Sickness Impact Profile (SIP). Lung function and the degree of bronchial hyperresponsiveness (BHR) were measured and diary cards were used to derive a symptom score and mean daily peak flow variability. The relation of change in AQLQ scores to change in the other outcomes was assessed. Questionnaire responsiveness was assessed by comparing the change in AQLQ scores between 19 improved and 20 stable subjects. Improvement was assessed on lung function and BHR criteria. As expected, change in AQLQ score was correlated with change in symptom score (r = 0.37, 95% CI -0.04 to 0.64) and change in BHR (r = 0.38, 95% CI 0.06 to 0.64). The associations with change in peak flow variability (r = 0.12, 95% CI - 0.26 to 0.47) and change in SIP score (r = 0.18, 95% CI - 0.12 to 0.45) were in the expected direction but weaker than expected. The AQLQ was capable of detecting differences between improved and stable subjects (p = 0.007). These data, in the context of the known content validity of the AQLQ, support the continued use of the AQLQ as a measure of change in adults with asthma. Further evaluation of construct validity should be incorporated into the design of clinical trials which use the AQLQ as an outcome measure.
Abstract: The traditional psychometric construct of intelligence is linked to mental energy which, in turn, is related to the capacity of the central nervous system (CNS) - i.e. the number of functioning neurons in the brain. This article reviews the evidence from studies of fluid intelligence, aging and diabetes mellitus which indicates that another property of the CNS-neural efficiency-provides an alternative physical basis of mental energy. The presence of nonoxidative metabolic processes in the brain indicates that a cognitive task has reached the limits of complexity for a given individual. It is suggested that the physical substrata of mental energy involve both the capacity and the efficiency of the CNS.
Abstract: A 20-item self-administered questionnaire with Likert scale responses was developed to measure quality of life in adult subjects with asthma. A total scale score together with subscale scores for breathlessness, mood disturbance, social disruption and concerns for health were calculated by addition of item scores. Items for the scale were selected by principal components analysis of the responses of 283 subjects to a preliminary pool of 69 items. In 58 subjects with stable asthma, good short term test-retest reliability was demonstrated with the intraclass correlation coefficient for the total scale being 0.80. The questionnaire was internally consistent in a sample of outpatients (Cronbach's alpha 0.92 in 77 subjects) and in a community sample with asthma (Cronbach's alpha 0.94 in 87 subjects). Weak correlations in the expected direction were seen with three medical markers of asthma severity. This supports the construct validity of the questionnaire and emphasizes that quality of life represents a separate dimension of asthma.
Abstract: A cohort study was carried out to determine whether childrens' perception of the problem of short stature changed over 2 years of growth hormone (GH) therapy. A total of 66 children (age range, 5-15 years; mean 10.2 years) were selected on the basis of height below the 3rd centile for chronological age, height velocity below the 25th centile for bone age, prepubertal status, and absence of any organic condition causing growth failure or likely to interfere with GH action. The children were taking part in a 2-year multicentre trial to assess the effect of authentic recombinant GH on short, slowly growing children without GH deficiency (GHD). The childrens' and parents' attitudes and emotional adjustment to shortness were assessed before GH therapy commenced, and at 6 months and 2 years, using a growth-specific psychological instrument, the Attitude to Growth scale (ATG). The children were also assessed using the Piers Harris Childrens Self Concept Scale at 2 years. The mean ATG scores increased from 34.2 (95% confidence interval, 33.2-35.2) at intake to 37.2 (95% confidence interval, 36.2-38.2) at 2 years. Younger subjects had a greater increase ( p < 0.05). No sex differences occurred. Two separate factors were identified in the childrens' attitudes: emotional preoccupation with stature and a concrete focus on practical aspects. No differences were present between childrens' and parents' mean scores, though parents' estimates differed on selected items. The mean Piers Harris score at 2 years was within the normal range, and was positively correlated to the ATG but was unrelated to height. It is concluded that GH treatment may have a beneficial effect on childrens' attitudes to being short, particularly in the younger child. It is recommended that parents undergo careful evaluation before their children are offered long-term treatment with GH, so that their understanding of their child's perceptions is clarified, and their own hopes and expectations of treatment become realistic and supportive to the child.
Abstract: Four measures of patient functioning and a mood adjective list currently used in trials of the International Breast Cancer Study Group (IBCSG), and an 8-item Linear Analogue Self Assessment (LASA) instrument measuring specific side effects of cancer and cancer treatment (GLQ-8), were cross-validated against three established measures of quality of life, mood and psychological adjustment to cancer, in a heterogeneous sample of cancer patients. Correlations between new and established measures were high, indicating good convergent and concurrent validity. Compliance on the longer mood measures was relatively poor. Despite the difficulty in developing direct and methodologically sound measures of quality of life, the regular inclusion of practical indicators of aspects of quality of life in clinical trials would allow improved assessment of the cost-benefit ratio of treatment to outcome in cancer patients.
