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Sixteen patients with primary brain tumours were examined on average eight years after treatment with surgery or whole brain irradiation using standard clinical assessment, CT, a neuropsychological test battery, and single photon emission CT (SPECT) with 99mTc-exametazime. Seventeen lesions were discovered on inspection of SPECT images, 11 with x-ray CT. Quantitative assessment of tracer uptake compared with 16 matched healthy volunteers was consistent with the presence of lesions. Measurement of uptake in brain regions of the hemisphere not containing the primary tumour still showed significant reductions in patients. This may be due to remote direct effects of the tumour or, more likely, to the whole brain irradiation received. Psychometric performance on most tests was significantly impaired in the patient group and was correlated with abnormalities of tracer uptake to relevant brain regions.

Purpose: To develop and preliminarily evaluate a Social Difficulties Inventory (SDI) for use in oncology practice. Methods: Item generation from patients (n=96), staff (n=49) and the literature. Questions constructed and pre-tested (n=42) resulting in a 22-item questionnaire. Psychometric evaluation (n=271) assessed frequency of endorsement, factor structure, summated scales and construct validity followed by randomisation to criterion validity or test-retest arms. Results: Items met preset frequency of endorsement criteria. Factor analysis revealed a four-factor structure, three clearly definable, (1) Physical ability, (2) Providing for the family and (3) Contact with others, explaining 45.8% variance. Summated scales developed from these demonstrated good reliability (Cronbach’s alpha > 0.7) and were used to test and confirmed construct validity. Several comparators from the Life Events and Difficulties Schedule (LEDS) and CAncer Rehabilitation Evaluation System Short Form (CARES-SF) tested criterion validity and majority agreements were moderate to good. Test–retest reliability was good with most kappa values > 0.6. One item was eliminated resulting in a 21-item questionnaire. Conclusion: The SDI is relevant and easy to understand. Initial psychometric evaluation was encouraging. Ongoing work to evaluate the clinical meaning and utility of the instrument and to examine the relationships between SDI scores and clinical outcomes will provide guidance about its usefulness as an assessment tool in routine oncology practice.

To determine whether palliation of chest symptoms from a 10 Gy single fraction (regimen 1) was equivalent to that from 30 Gy in 10 fractions (regimen 2).Patients with cytologically proven, symptomatic lung cancer not amenable to curative therapy, with performance status 0-3, were randomised to receive either 30 Gy in 10 fractions or a 10 Gy single fraction. Local symptoms were scored on a physician-assessed, five-point categorical scale and summed to produce a total symptom score (TSS). This, performance status, Hospital Anxiety and Depression (HAD) score and Spitzer's quality-of-life index were noted before treatment, at 1 month after treatment and every 2 months thereafter. Palliation was defined as an improvement of one point or more in the categorical scale. Equivalence was defined as less than 20% difference in the number achieving an improvement in the TSS.We randomised 149 patients and analysed 74 in each arm. According to the design criteria, palliation was equivalent between the two arms. TSS improved in 49 patients (77%) on regimen 1, and in 57 (92%) patients on regimen 2, a difference of 15% (95% confidence interval [CI] 3-28) in the proportion improving between the two regimens. A complete resolution of all symptoms was achieved in three (5%) on regimen 1, and in 14 (23%) patients on regimen 2 (P0.001), a difference in the proportion between the two regimens of 21% (95% CI 10-33). A significantly higher proportion of patients experienced palliation and complete resolution of chest pain and dyspnoea with regimen 2. No differences were observed in toxicity. The median survival was 22.7 weeks for regimen 1 and 28.3 weeks for regimen 2 (P = 0.197).Although this trial met the pre-determined criteria for equivalence between the two palliative regimens, significantly more patients achieved complete resolution of symptoms and palliation of chest pain and dyspnoea with the fractionated regimen.

The aim of the study was to compare psychosocial outcomes for 50 new clinic attendees, referred for cancer genetic counselling to five UK centres. The centres represented England, Scotland and Wales, and were randomly selected from groups ranked by different levels of clinical activity in cancer genetics practice. Questionnaires assessed demographic data, risk perception, mental health and use of health services pre-consultation and at 1 and 12 months follow-up. Satisfaction was measured for attendees and referring doctors at follow-up. A total of 256 unaffected adults fulfilled the study criteria. The five centres varied widely with respect to service organisation and activity, but all had a greater proportion of unaffected attendees with a breast cancer risk (61-91%) than either a bowel cancer risk (0-33%) or ovarian cancer risk (3-25%). There were no significant differences in the psychosocial data between centres pre-counselling. No significant change over time occurred for any of the centres for risk perception or general psychological distress. There were significant differences between centres in reduction of cancer worry from baseline to 12 months and with the number of women who were recommended to have mammographic surveillance who had not received this. Overall, one-third of women for whom mammography had been recommended had not been screened within 1 year of follow-up. Subsequent attendance at the GP, but not at a hospital, was associated with risk level, but differences between centres could not be analysed. Satisfaction differed significantly between centres for 4 : 14 aspects of service provision and with 3 : 17 items concerning communication; satisfaction was high overall. Over 90% of referring doctors were moderately/very satisfied with the service, but 23% were dissatisfied with waiting times and 19% with access to preventive treatment. Results differed significantly between centres for doctor's satisfaction with the provision of referral criteria and prescribing information. In conclusion, there were relatively few significant differences in psychosocial outcomes between centres, considering the wide variation in service organisation and activity. These significant differences were not consistent across the centres, therefore, differences could not be linked to specific aspects of service provision.

This study aimed to compare the impact of two versions of a psychoeducational written intervention on cancer worry and objective knowledge of breast cancer risk-related topics in women who had been living with an increased risk of familial breast cancer for several years. Participants were randomised to three conditions: scientific and psychosocial information pack (Group 1), scientific information pack only (Group 2) or standard care control (Group 3). They completed postal questionnaires at baseline (n=163) and 4 weeks (n=151). As predicted, there was a significant decrease in cancer worry for Group 1, but not Group 2. Objective knowledge significantly improved for both Group 1 and Group 2 as expected, but not Group 3. However, there was an unpredicted decline in cancer worry for Group 3. This study supports the value of a scientific and psychosocial information pack in providing up-to-date information related to familial risk of breast cancer for long-term attendees of a familial breast cancer clinic. Further research is warranted to determine how the information pack could be incorporated into the existing clinical service, thus providing these women with the type of ongoing psychosocial support that many familial breast cancer clinics are currently lacking.

A novel nurse-delivered multicomponent intervention for major depressive disorder (MDD) in cancer outpatients was compared with usual care alone in a nonrandomised matched group design (n=30 per group). At the final 6-month outcome, 38.5% (95% CI, 5.4–57%) fewer patients in the intervention group still met the criteria for MDD.

Purpose: Systematic quality-of-life (QOL) assessment may have value in oncology practice by increasing awareness of a wide range of issues, possibly increasing detection of psychologic morbidity, social problems, and changes in physical status, and improving care and its outcomes. However, logistic problems are substantial. Automated systems solve many of these problems. We field-tested the feasibility and compliance that can be achieved using a computer touchscreen system in two consecutive studies. Patients and Methods: In study 1, a prospective cohort of 272 patients was offered QOL assessment at each clinic appointment for 6 months. In study 2, all patients (N = 1,291) were offered QOL assessment as part of clinic routine during a 12-week period. Results: In study 1, 82% of patients agreed to take part, but over time, compliance was poor (median, 40%; mean, 43%) and deteriorated with longer follow-up. In study 2, the overall compliance was greatly increased (median, 100%; mean, 70%), and compliance was retained over multiple visits. In study 1, compliance was better in younger patients, males, and socially advantaged patients, but was not affected by the presence of depression or anxiety, or QOL. In the second study, building on experience in the first study, data collection and storage in the computer system was excellent, achieving 98% of collected data stored in one center. In general, patients were comfortable with the computers and the approach. Data collection on the wards was more difficult and less complete than in clinics, especially for patients undergoing acute admissions. Conclusion: Feasibility with higher compliance was demonstrated in study 2, in which the data collection was integrated into routine care, and can be improved with further technical initiatives and education of staff.

In cross-national comparisons based on questionnaires, accurate translations are necessary to obtain valid results. Differential item functioning (DIF) analysis can be used to test whether translations of items in multi-item scales are equivalent to the original. In data from 10,815 respondents representing 10 European languages we tested for DIF in the nine translations of the EORTC QLQ-C30 emotional function scale when compared to the original English version. We tested for DIF using two different methods in parallel, a contingency table method and logistic regression. The DIF results obtained with the two methods were similar. We found indications of DIF in seven of the nine translations. At least two of the DIF findings seem to reflect linguistic problems in the translation. 'Imperfect' translations can affect conclusions drawn from cross-national comparisons. Given that translations can never be identical to the original we discuss how findings of DIF can be interpreted and discuss the difference between linguistic DIF and DIF caused by confounding, cross-cultural differences, or DIF in other items in the scale. We conclude that testing for DIF is a useful way to validate questionnaire translations.

The Hospital Anxiety and Depression Scale (HADS) is widely used as a tool for assessing psychological distress in patients and non-clinical groups. Previous studies have demonstrated conflicting results regarding the factor structure of the questionnaire for different groups of patients, and the general population. This study investigated the factor structure of the HADS in a large heterogeneous cancer population of 1474 patients. It also sought to investigate emerging evidence that the HADS conforms to the tripartite model of anxiety and depression (Clark & Watson, 1993), and to test the proposal that detection rates for clinical cases of anxiety and depression could be enhanced by partialling out the effects of higher order factors from the HADS (Dunbar et al., 2000). The results demonstrated a two-factor structure corresponding to the Anxiety and Depression subscales of the questionnaire. The factor structure remained stable for different subgroups of the sample, for males and females, as well as for different age groups, and a subgroup of metastatic cancer patients. The two factors were highly correlated (r =.52) and subsequent secondary factor analyses demonstrated a single higher order factor corresponding to psychological distress or negative affectivity. We concluded that the HADS comprises two factors corresponding to anhedonia and autonomic anxiety, which share a common variance with a primary factor namely psychological distress, and that the subscales of the HADS, rather than the residual scores (e.g. Dunbar et al., 2000) were more effective at detecting clinical cases of anxiety and depression.

Background. Little is known about the factors that women at increased risk of ovarian cancer consider to be important when deciding about prophylactic oophorectomy, surgery to remove the ovaries before they develop cancer. Methods. Women who had undergone prophylactic oophorectomy (surgical group; n = 30) were compared with women who remained on the ovarian screening program (nonsurgical group; n = 28) on their importance ratings for a number of relevant decision-making factors. Results. The most important decision-making factor across all subjects was reducing risk of ovarian cancer, but the single best predictor of group membership was the importance attributed to reducing cancer worry. Women who rated this factor as more important were more likely to be in the surgical group. No women identified the increased risk of heart disease and osteoporosis as issues for consideration. Conclusions. The desire to reduce cancer worry is likely to be the most important factor in a woman's decision to proceed to prophylactic oophorectomy. In view of the current imprecision in risk estimates given to women considering this option, cancer worry may override a more rational consideration of the costs and benefits of surgery.

Individuals at increased risk of developing breast cancer due to their family history of the disease face a number of uncertainties. Personal cancer risk estimates are imprecise and current methods for early detection or prevention are not 100% effective. It is therefore not surprising that adverse psychosocial outcomes have been described within this population. Research attempting to predict the incidence of distress and dysfunction in individuals at increased risk of cancer has been largely a-theoretical and has overlooked a number of potentially important predictive variables. In particular, the influence of personal experience of cancer through involvement with affected relatives has been neglected. There are strong theoretical grounds for hypothesising that dimensions of personal experience may influence response to cancer risk. This paper discusses the potential impact of personal experience on risk perception, illness representations and decision-making. Systematic research in this area may improve predictions of outcome of cancer genetic counselling and inform the clinical process.

The aim of the study was to confirm the validity of using touchscreen computers for screening for clinically significant levels of distress among cancer patients in routine oncology practice. The Hospital Anxiety and Depression Scale (HADS), EORTC Quality of Life questionnaire (QLQ-C30), Mental Health Inventory-MHI5 and a Concerns Checklist were administered via touchscreen computer to 172 chemotherapy out-patients, twice, 2–4 weeks apart. A standard psychiatric interview (Present State Examination – PSE) was conducted within a week of the second assessment. On interview, 23% of patients were identified as ‘cases’. Using the available data (questionnaires, sociodemographic details, self-reported past psychiatric history), the best screening strategy combined scores from MHI-5 and HADS from a single time-point with the following rules: if MHI-5 < 11 = non-case; if MHI-5 ≥ 11 then use HADS; then, if HADS ≥ 9 = ‘case’ (sensitivity 85%; specificity 71%; misclassification rate 26%; positive predictive value 47%). The computerized screening system enabled data to be collected, scored, collated and reported in real time to identify patients who warrant further clinical assessment. It offers the potential for improving ‘case’ detection in routine oncology practice while reducing the burden of questions put to ‘non-cases’. Further work is needed to develop optimal choice of screening questions for this purpose. © 2001 Cancer Research Campaign http://www.bjcancer.com

Of 230 women referred to a familial ovarian cancer clinic, 196 (85%) completed a questionnaire before they attended. The data collected included pre-counselling risk perceptions and an assessment of distress. Respondents were more likely to underestimate (44%) than overestimate (19%) their risk. Those with a family history of breast and ovarian cancer (HBOC) were particularly likely to underestimate their ovarian cancer risk. The variables assessed in this study – sociodemographic, family history, distress, anxiety proneness, coping style and beliefs about health control – explained little of the observed variation in accuracy of risk perception. On the General Health Questionnaire (GHQ-30) 30% of the sample obtained scores above the cut-off (≥ 6) recommended for screening for ‘case-level’ psychological distress. Women exhibiting case-level distress were more likely to overestimate their risk (OR = 2.3). On univariate analysis low internal locus of control was associated with ‘case-level’ distress (P = 0.008). On multiple regression the best predictors of ‘caseness’ were high-trait anxiety, being a graduate and inaccurate risk perception. There was no difference in the level of distress shown by women with HBOC vs. those with a history of ovarian cancer only. Implications of these findings for the counselling needs of the women are discussed. The effectiveness of the clinic in improving the accuracy of risk perceptions and relieving distress is being assessed. © 2001 Cancer Research Campaign http://www.bjcancer.com

Familial ovarian cancer clinics are a recent development and little is known about the characteristics of women who attend. One hundred and ninety-seven women with a family history of ovarian cancer completed a questionnaire prior to their initial attendance at the Familial Ovarian Cancer Clinic in Edinburgh. Issues relating to screening procedures were the most commonly cited barriers to attendance, with a proportion finding gynaecological examination embarrassing (17.0%) or uncomfortable (18.0%). Expectations of the clinic were high in terms of access to resources and information. The vast majority of women would prefer to have regular screening (94.7%) and genetic testing (93.2%) if it were available. Attitudes to prophylactic surgery and chemoprevention were more diverse, but would be considered by 54.3% and 43.9% of respondents respectively. Although the current screening procedure for ovarian cancer is of unproven efficacy, a high proportion of women believed in its ability to reduce mortality (77.9%) and to detect tumours at an early stage (65.8%). There was a trend for women to believe this more strongly at follow-up. This study highlights the need to make women more aware of the limitations of current ovarian cancer screening techniques, particularly where the alternative management strategy of prophylactic surgery might otherwise be dismissed.

A questionnaire was developed, according to the European Organization for Research and Treatment of Cancer (EORTC) published guidelines, to supplement the EORTC quality of life questionnaire-core 30 (QLQ-C30) to assess the quality of life (QL) of women with ovarian cancer treated in clinical trials. The provisional 28-item module, OV28, assesses abdominal symptoms; peripheral neuropathy; other chemotherapy side-effects; hormonal symptoms; body image; attitude to disease and treatment; and sexual functioning. The first 24 items of the module (excluding sexual functioning) were included in a UK multicentre trial (SCOTROC). The trial data were used for preliminary scaling analysis. Two problematic items were identified. When these were treated as single items along with the 'other chemotherapy side-effects' the instrument showed excellent scale properties. Mean scale scores discriminated between trial patients pre- and on chemotherapy. This is a promising tool for assessing the QL of women with ovarian cancer. The EORTC international field study (Protocol 15982) to assess more fully the psychometric properties of the OV28 is well underway.

Diagnosis of and treatment for cancer may not only create physical and emotional difficulties for patients but may also have an impact on social aspects of patients' lives. Screening for social problems has not become part of routine oncology practice. This may be due to lack of a suitable questionnaire. This paper presents a psychometric analysis of the Problems Checklist with a view to assessing its usefulness as a screening tool for social problems in oncology. Evaluation was undertaken using data from an earlier study of 505 patients who completed the checklist. Frequency of endorsement, missing values, factor analysis and reliability and validity analysis of the summated scales were carried out. Missing data rates ranged from 4 to 18% over the 16 items. Fourteen items were well endorsed. Factor analysis produced a four-factor structure with components labelled daily living, relationships, economics and emotions. Reliability and validity tests endorsed the factor structure with the components on economics and emotions being particularly credible. Difficulties with relationships are harder to measure and results from the analysis suggest that this is an area that warrants further investigation. The checklist is a useful tool for highlighting problems. As a tool for screening for social problems it has some limitations. Copyright © 2001 John Wiley & Sons, Ltd.

The European Organization for Research and Treatment of Cancer (EORTC) has taken a leading role in the development of the methodology of quality of life (QL) measurement. In the EORTC Quality of Life Study Group (QLSG) valid instruments to assess QL in a general manner and disease-specific modules have been developed to be used in oncological clinical trials. Statistical and methodological aspects of QL research are discussed. The application of QL assessments in clinical trials represents a subsequent challenge. To improve the practice of QL assessment in clinical trials an 'EORTC model' has been developed. This model requires the collaboration of liaison persons, the EORTC Cooperative Tumour Groups and the EORTC Data Centre Quality of Life Unit (QL Unit). Cooperation between these parties, protocol development and advantages and concerns of the model are mentioned in this paper. Finally, suggestions for improvement are proposed.

The provision of information about diagnosis and treatment modalities is seen as being of positive value in assisting patients with cancer to cope with life-threatening illness. However, no systematic studies have assessed the perceived information needs of patients receiving adjuvant chemotherapy for surgically resected colorectal cancer, despite this being the second most frequent cancer in males and third in females ( Cancer Research Campaign 1993 ).Therefore, this study was undertaken to monitor the information needs of these patients over time in order to provide future direction for clinical practice and research.The study examined the existing knowledge and information needs of a consecutive series of 80 patients newly referred to an oncology clinic for consideration of adjuvant chemotherapy following surgical resection for colorectal cancer. Forty of these patients went on to receive treatment and were assessed at four time points throughout their 6 months of chemotherapy using a variety of self-completion questionnaires, scales and tape-recorded interviews.The findings of the study demonstrated that patients' perceived information needs, anxiety levels and quality of life changed significantly throughout the course of their treatment, highlighting both positive and negative aspects of information provision. Patient characteristics were not found to be significantly associated with information need.

Women referred to a familial breast cancer clinic completed questionnaires before and after counselling and at annual follow-up to assess their risk estimate and psychological characteristics. The aims were to determine whether those who attended the clinic overestimated their risk or were highly anxious and whether counselling influenced risk estimates and levels of distress. Women (n = 450) at this clinic were more likely to underestimate (39%) than overestimate (14%) their risk. Mean trait anxiety scores were higher than general population data (t = 4.9, n = 1059, P < 0.001) but not significantly different from published data from other screening samples. Overestimators (z = 5.69, P < 0.0001) and underestimators (z = –8.01, P < 0.0001) reported significantly different risk estimates (i.e. increased accuracy) after counselling, but significant inaccuracies persisted. Over- (n = 12) and underestimators (n = 60) were still inaccurate in their risk estimates by a factor of 2 after counselling. Thirty per cent of the sample scored above the cut-off (5/6) for case identification on a screening measure for psychological distress, the General Health Questionnaire (GHQ). GHQ scores were significantly lower after counselling (t = 3.6, d.f. = 384, P = 0.0004) with no evidence of increasing risk estimate causing increased distress. The risk of distress after counselling was greater for younger women and those who were more distressed at first presentation. The counselling offered was effective in increasing the accuracy of risk perceptions without causing distress to those who initially underestimated their risk. It is worrying that inaccuracies persisted, particularly as the demand for service has since reduced the consultation time offered in this clinic. Further work is needed to evaluate alternative models of service delivery using more sophisticated methods of assessing understanding of risk. © 1999 Cancer Research Campaign

The clinical application of new genetic knowledge about inherited predisposition to breast cancer raises many questions which psychologists are well placed to address. There are large margins of uncertainty around the information which people can be given about their personal risk of developing breast cancer based on their family history of this common disease. The effectiveness of available strategies for early detection or prevention of breast cancer has yet to be proven among younger (age

Background : The optimum dose and fractionation schedule for the palliative irradiation of painful bone metastases is controversial. Purpose : To compare the efficacy, side-effects and effect on quality of life of two commonly used radiotherapy schedules in the management of painful bone metastases. Materials and methods : In a prospective trial, 280 patients were randomised to receive either a single 10 Gy treatment or a course of 22.5 Gy in five daily fractions for the relief of localised metastatic bone pain. Results : Response rates have been calculated from 240 assessable treated sites of pain. The overall response rates were 83.7% (single treatment) and 89.2% (five fractions). The complete response rates were 38.8% (single treatment) and 42.3% (five fractions). The median duration of pain control was 13.5 weeks (single treatment) and 14.0 weeks (five fractions). None of these differences was statistically significant. There were no differences between the groups in the effect of treatment on a variety of quality of life parameters. Conclusions : It is concluded that a single 10 Gy treatment is as effective as a course of 22.5 Gy in five fractions in the management of painful bone metastases.

Prophylactic cranial irradiation (PCI) reduces the risk of cranial metastasis in small cell lung cancer (SCLC), but the magnitude and value of this reduction, the risks of radiation morbidity and whether PCI influences survival are unclear. We conducted a randomised trial in patients with limited-stage SCLC who had had a complete response to induction therapy. Initially, patients were randomised equally to (1) PCI 36 Gy in 18 daily fractions, (2) PCI 24 Gy in 12 fractions and (3) no PCI; subsequently, to increase the rate of accrual, randomisation was to clinicians' choice of PCI regimen versus no PCI (at a 3:2 ratio). The endpoints were appearance of brain metastases, survival, cognitive function, and quality of life (QoL). Three hundred and fourteen patients (194 PCI, 120 No PCI) were randomised. In the revised design, the most commonly used PCI regimens were 30 Gy in 10 fractions and 8 Gy in a single dose. With PCI, there was a large and highly significant reduction in brain metastases (HR = 0.44, 95% CI 0.29-0.67), a significant advantage in brain-metastasis-free survival (HR = 0.75, 95% CI 0.58-0.96) and a non-significant overall survival advantage (HR = 0.86, 95% CI 0.66-1.12). In both groups, there was impairment of cognitive function and QoL before PCI and additional impairment at 6 months and 1 year, but no consistent difference between the two groups and thus no evidence over 1 year of major impairment attributable to PCI. PCI can safely reduce the risk of brain metastases. Further research is needed to define optimal dose and fractionation and to clarify the effect on survival. Patients with SCLC achieving a complete response to induction therapy should be offered PCI.

PURPOSE To construct a breast cancer-specific quality-of-life questionnaire (QLQ) module to be used in conjunction with the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 and to test its reliability and validity cross-culturally. PATIENTS AND METHODS Module construction took place after the EORTC guidelines for module development. The module--the QLQ-BR23--consists of 23 items covering symptoms and side effects related to different treatment modalities, body image, sexuality, and future perspective. This module was tested in 170 Dutch, 168 Spanish, and 158 American cancer patients at two points in time. The timing for the Dutch and Spanish patients was before and during treatment with radiotherapy or chemotherapy. For the American patients, the questionnaire was administered at admission at the breast clinic and 3 months after the first assessment. RESULTS Multitrait scaling analysis confirmed the hypothesized structure of four of the five scales. Cronbach's alpha coefficients were, in general, lowest in Spain (range; .46 to .94) and highest in the United States (range; .70 to .91). On the basis of known-groups comparisons, selective scales distinguished clearly between patients differing in disease stage, previous surgery, performance status, and treatment modality, according to expectation. Additionally, selective scales detected change over time as a function of changes in performance status and treatment-induced change. CONCLUSION These results lend support to the clinical and cross-cultural validity of the QLQ-BR23 as a supplementary questionnaire for assessing specific quality-of-life issues relevant to patients with breast cancer.

A national questionnaire-based survey has found that palliative physicians report lower levels of burnout and similar levels of psychiatric morbidity than those reported by consultants in other specialties. To try to explain these findings, this study compared the sources of job stress and satisfaction reported by consultant palliative physicians with those reported by consultants working in four other specialties: surgery, gastroenterology, radiology and oncology. Stressful and satisfying aspects of work were assessed using questionnaires designed specifically for the study. The response rate for the palliative physicians was 126/154 (82%) and for the consultants in the other specialties 882/1133 (78%). Palliative physicians reported that feeling overloaded and its effect on home life made the greatest contribution to their job stress, and having good relationships with patients, relatives and staff made the greatest contribution to their job satisfaction. However, compared with the other specialist groups, palliative physicians reported less stress from overload ( p < 0.001) and more satisfaction from having good relationships ( p < 0.001). They also reported less stress and more satisfaction with the way they are managed and resourced (both p < 0.001). Hospital-based palliative physicians reported more stress and less satisfaction from their management and resources than their colleagues working in hospices (both p = 0.05). Thirty-five percent of palliative physicians felt insufficiently trained in communication skills and 81% felt insufficiently trained in management skills. Burnout was more prevalent among consultants who felt insufficiently trained in communication and management skills than among those who felt sufficiently trained. It is important therefore that effective training in communication and management skills are provided and that, at the very least, existing levels of resourcing and management practices within palliative medicine are maintained in order that physicians working in the specialty are able to provide care to dying patients without prejudicing their own mental health.

Summary Background Burnout and psychiatric morbidity among gastroenterologists, surgeons, radiologists, and oncologists in the UK have been estimated by means of a questionnaire-based survey. The relationship between consultants' mental health and their job stress and satisfaction, as well as their job and demographic characteristics, were also examined. Methods Psychiatric morbidity was estimated using the 12-item General Health Questionnaire. The three components of burnout—emotional exhaustion, depersonalisation, and low personal accomplishment—were assessed using the Maslach Burnout Inventory. Job stress and satisfaction were measured using study-specific questions. Findings Of 1133 consultants, 882 (78%) returned questionnaires. The estimated prevalence of psychiatric morbidity was 27%, with no significant differences between the four specialist groups. Radiologists reported the highest level of burnout in terms of low personal accomplishment. Job satisfaction significantly protected consultants' mental health against job stress. Three sources of stress were associated with both burnout and psychiatric morbidity: feeling overloaded, and its effect on home life; feeling poorly managed and resourced; and dealing with patients' suffering. Burnout was also associated with low satisfaction in three domains: relationships with patients, relatives, and staff; professional status/esteem; intellectual stimulation. In addition, being aged 55 years or less and being single were independent risk factors for burnout. Burnout was also more prevalent among consultants who felt insufficiently trained in communication and management skills. Interpretation Consultants' mental health is likely to be protected against the high demands of medical practice by maintaining or enhancing job satisfaction, and by providing training in communication and management skills.

Background : Cognitive deficits are the hallmark of dose limiting late radiation morbidity in the CNS. Little is known about the neuropsychometric morbidity of treatment in adults with primary brain tumours. We set out to evaluate systematically the neuropsychometric function of all long-term survivors in order to document the frequency and severity of impairment and study its relationship with tumour and treatment related parameters. Materials and methods : 30 patients surviving in clinical and radiological remission for >4 years following irradiation were recalled for clinical examination, CT/MRI scan and neuropsychometric testing. The 14 males, 16 females, (mean age 42.5 years), represented all but one long term survivors treated with radiotherapy in the Department of Clinical Oncology between 1971 and 1990. Twenty-five patients had a histological diagnosis of glioma. Patients treated before 1987 ( n =16) received whole brain irradiation (WBI); focused irradiation (FI) has been used since ( n = 14). Results : The two groups were similar in age, initial tumour type and surgical treatment, but the WBI group showed more evidence of neuropsychometric impairment than the FI group with significantly lower group median scores in tests of visuospatial organisation (WAIS Block Design, P =0.01), visual memory (Rey Complex figure, P =0.003) and complex information processing (Trails A, P =0.003; Trails B, P =0.002). Pre-morbid IQ estimated from sociodemographic variables, was comparable in the 2 groups which were not significantly different in their emotional state as assessed by the HADS. On univariate analysis radiation volume ( P =0.05) and time from treatment ( P =0.02) were the main factors associated with neuropsychometric deficit. Multivariate analysis by logistic regression confirmed WBI as the only independent predictor of neuropsychometric impairment (WBI vs. FI, odds ratio=7.1, 95% C.I. 1.2–42.3, P =0.03). Conclusions : Neuropsychometric deficits are common and can be related to time from treatment and radiation technique. Neuropsychometric testing can be a useful tool in the evaluation of different treatment strategies.

An audit was carried out of 51 oncology patients referred to a clinical psychology service to identify the characteristics of patients selected for referral and to assess change following psychological intervention. A survey was conducted of an unselected sample of oncology patients representative of the workload of the oncology department from which the referrals came, to determine the prevalence of comparable psychosocial problems among patients who were not referred for help and to assess whether doctors were aware of the problems patients reported. Data were collected using the Hospital Anxiety and Depression (HAD) and Mental Adjustment to Cancer (MAC) scales and a problem checklist devised for this study. Referred patients were significantly more anxious and depressed (P < 0.001) and showed poorer adjustment on MAC scales than the surveyed sample, but 30% of the latter group warranted assessment for anxiety and 23% for depression. The number of psychosocial problems of their severity. Intervention was clinically significant mood disorder irrespective of the specific problems of their severity. Intervention was associated with a significant improvement in distress and problems for referred patients by the time of discharge. Psychosocial problems were often undetected by staff even in referred patients. The checklist is a feasible screening method for potentially remediable problems which are cumulatively a significant contributor to cancer patients' distress.

The prevalence and causes of 'burnout' and psychiatric disorder among senior oncologists and palliative care specialists have been measured in a national questionnaire-based survey. All consultant non-surgical oncologists in the UK were asked to participate. Sources of work-related stress and satisfaction were measured using study-specific questions which were aggregated into factors. Psychiatric disorder was estimated using the 12-item General Health Questionnaire. The three components of 'burnout'--emotional exhaustion, depersonalisation and low personal accomplishment--were assessed using the Maslach Burnout Inventory. Three hundred and ninety-three out of 476 (83%) consultants returned their questionnaires. The estimated prevalence of psychiatric disorder in cancer clinicians was 28%, and this is similar to the rate among British junior house officers. The study group had equivalent levels of emotional exhaustion and low personal accomplishment to those found in American doctors and nurses, but lower levels of depersonalisation. Among cancer clinicians, 'burnout' was more prevalent among clinical oncologists than among medical oncologists and palliative care specialists. Psychiatric disorder was independently associated with the stress of feeling overloaded (P < 0.0001), dealing with treatment toxicity/errors (P < 0.004) and deriving little satisfaction from professional status/esteem (P = 0.002). 'Burnout' was also related to these factors, and in addition was associated with high stress and low satisfaction from dealing with patients, and with low satisfaction from having adequate resources (each at a level of P < or = 0.002). Clinicians who felt insufficiently trained in communication and management skills had significantly higher levels of distress than those who felt sufficiently trained. If 'burnout' and psychiatric disorder among cancer clinicians are to be reduced, increased resources will be required to lessen overload and to improve training in communication and management skills.

In this pilot study, the acceptability of approaching 111 newly diagnosed colorectal cancer patients with the offer of genetic testing for hereditary nonpolyposis colorectal cancer (HNPCC) was assessed. A total of 78% of participants found it highly acceptable to have the information about HNPCC brought to their attention at that time.

Objective: To assess the acceptability to patients of a diagnostic interview for depression (Structured Clinical Interview for DSM-IV; SCID) conducted over the telephone to their homes. Method: Postal questionnaire survey of patients who had attended an oncology outpatient clinic where they had scored high on a screening questionnaire and had subsequently undergone an SCID interview over the telephone. Results: Of the 224 patients telephoned, five refused the diagnostic interview. Of the 219 who were interviewed, 184 satisfactorily completed and returned the postal questionnaire (84% response rate). Only 17% reported the interview to be distressing. Ninety-four percent of all questionnaire respondents and 84% (n=31) of those who reported the interview to have been distressing endorsed the item “Had I known in advance what answering the questions would have been like for me, I would still have agreed to take part”. Perceiving the interview as distressing was associated with having major depression (P

(1994). The EORTC Modular Approach to Quality of Life Assessment in Oncology. International Journal of Mental Health: Vol. 23, Quality of Life Assessment Cross-cultural Issues—1, pp. 75-96.

Despite its effectiveness in reducing the rate of brain metastases, the role of prophylactic cranial irradiation (PCI) in the management of small cell lung cancer (SCLC) remains controversial because of concern about radiation-induced neurological morbidity. In order to evaluate morbidity and its impact on quality of life 64 patients surviving ≥2 years in remission were recalled for assessment. 52 had received PCI. Most of the patients were well: 95% had performance status ≤1 and nine out of 37 neurological examinations were abnormal. On neuropsychometric testing, only 19% of patients performed at the level expected for their age and intellectual ability on all four tests used. Fifty-four per cent of patients were impaired on two or more of the tests, suggesting a significant degree of measurable cognitive dysfunction. The number of patients who had not received PCI was insufficient for comparative analysis with the number who had, but among those treated with PCI, patients receiving 8 Gy in 1 fraction appeared less impaired than those receiving higher radiation doses in multiple fractions. The study showed that neuropsychometric testing is acceptable to patients, can be administered by non-psychologists in the clinic and is sensitive to otherwise undetected deficits of cognitive function in this patient population. Prospective evaluation of PCI should include neuropsychometric testing.

The EORTC Study Group on Quality of Life (the Study Group) has adopted a modular approach to quality of life (QOL) assessment in cancer clinical trials. A ‘core’ instrument—the QLQ-C30—has been designed to cover a range of QOL issues relevant to a broad spectrum of cancer patients. It is intended that this QLQ-C30 be supplemented by more specific subscales (‘modules’) to assess aspects of QOL of particular importance to specific subgroups of patients. Since individual members of the Study Group were to be involved in module development, guidelines were required to standardize the module development process in order to ensure uniformly high quality across modules. These guidelines are presented in this paper. The term ‘module’ is defined, the composition of modules is outlined, and the criteria used to develop modules are specified. The module development process, consisting of four phases (generation of relevant QOL issues, operationalization of the QOL issues into a set of items, pretesting the module questionnaire, and large-scale field-testing) is described in detail. Further, issues related to cross-cultural instrument development, and the need for monitoring the module development process from within the Study Group are discussed. Finally, experiences with developing two site-specific modules (i.e., for head and neck, and breast cancer), are presented and the extent to which the guidelines meet practical requirements is discussed. The guidelines appear to provide a practical tool for module construction, that can facilitate the development of a comprehensive system for assessing the QOL of cancer patients internationally.

We have examined the validity of using the National Adult Reading Test (NART) to estimate premorbid intellectual levels in long-term survivors of glioma who had received whole brain prophylactic irradiation. Sixteen controls matched for age, sex, education and social class were compared with 16 patients. Patients made significantly more errors in the NART than controls, even after controlling for demographic variables. NART errors were compared with demographically predicted NART errors and NART-predicted Wechsler Adult Intelligence Scale-Revised (WAIS-R) with pro-rated WAIS-R scores. While predicted and measured error scores were similar for the controls, for patients NART errors were higher than those predicted by demographic variables, while NART-predicted WAIS-R scores were higher than pro-rated WAIS-R. NART performance, therefore, appears to be detrimentally affected by brain changes due to the primary tumour or received treatment. This conclusion was supported by the finding that, in patients, NART errors were correlated with current IQ, but not with IQ predicted by socio-demographic variables. After excluding four demented patients, this pattern of results was largely preserved. After excluding four patients with left temporal lobe involvement, the correlation of NART errors with current IQ disappeared, whereas that with NART errors predicted by socio-demographic variables became significant. These results suggest that the NART can only be used with caution in survivors of malignant primary brain tumors, particularly if left temporal lobe structures are involved.

The 8th Conference of the British Psychosocial Oncology Group was held in London on 9–10 December 1991 and attracted over 120 participants. The conference was extended from its usual one day format to one and a half days, to allow more time for both a formal and informal exchange of ideas. Eight invited speakers participated, but proferred papers and posters remained an important focus of the meeting. This is the largest annual conference in Britain for professionals working in psychosocial oncology and an important forum for the presentation of research. As in previous years, the conference attracted a number of newcomers, indicating the continued expansion of this field of research. A number of topical issues were presented in keynote papers by invited speakers. New work in cancer prevention and the associated areas of counselling families at risk and ethical issues, formed one symposium. Communication skills and relevant training needs in paediatric and adult oncology were an important theme of the conference and intervention studies formed the third main topic.

At a time of low morale the multidisciplinary staff working on a medical oncology rated the severity and frequency of problems arising in their working environment and their personal levels of stress and job satisfaction. An anonymous paper and pencil exercise was used to identify problems at work and possible solutions which staff then discussed as a group. Within four months some changes were implemented resulting in a significant reduction in problems on the unit and a commensurate improvement in morale. Interdisciplinary communication particularly benefited. This problem solving approach was useful in overcoming initial resistance to seeking a cooperative solution to shared problems at work.

Research in the psychological aspects of cancer and chemotherapy has reached an exciting stage of development. More acceptable standards of scientific rigour are being applied to thinking and research, spanning a wide range of important issues from prognostic indicators to the evaluation of treatment trials. It is important to remember that patients do not exist in isolation and that the impact of disease and treatment is also felt by their care givers. The burden which falls on spouses and other primary carers and the importance of their contribution to patients' adaptation to illness should not be underestimated. By the same token the emotional demands particularly on nursing and junior medical staff are increasingly recognized with developing interest in optimal means of providing staff support. Thus the field is still expanding. It requires the continuing collaborative effort of a wide range of professional disciplines to improve our understanding of the psychological aspect of oncology for all cancer patients and those who care for them.

Background. Depression is a common problem in all medically ill populations. Reported prevalence rates of major depression in patients with cancer are up to 50%. Cancer patients attending primary care and medical outpatient clinics with comorbid major depressive disorder frequently do not receive effective treatment. More effective ways of identifying and treating patients with both cancer and depression are therefore urgently required. Aim. The paper reports a study addressing the question of whether oncology nurses can be trained to take on a greater role in the management of major depression in their patients. Method. We developed and piloted an intervention that can be delivered by a specially trained oncology nurse. The intervention is multifaceted and based on a problem-solving model. It requires a widening of the role and expertise of specialist nurses. Discussion. The challenges this role presents to the nurses are discussed. We suggest that they must have a varied work programme that is not exclusively about managing depression, that they require adequate peer support and are likely to be most effective when working as part of a multidisciplinary psycho-oncology team. Conclusion. We conclude that it is possible to train selected specialist oncology nurses to manage major depression in patients with cancer in the context of an appropriately constituted multidisciplinary team.

A screening programme designed to identify cases of Major Depressive Disorder (MDD) in patients attending a Regional Cancer Centre outpatient department was established. It comprised two stages: (1) The Hospital Anxiety and Depression Scale (HADS) self-rating questionnaire administered by a touch-screen computer; (2) we interviewed patients with high scores on the HADS (15 or more total score) over the telephone using the depression section of the Structured Clinical Interview for DSMIV (SCID). A large consecutive sample (5613) of oncology clinic attenders was screened, and practical difficulties in the screening process were identified. The estimated prevalence of major depressive disorder (MDD) in the sample surveyed was approximately 8% (7.8%; 95% confidence intervals 6.9-8.5%). We assessed a consecutive series of 150 patients identified as having MDD to determine how many had received evidence-based treatment for MDD. Only half had discussed their low mood with their general practitioner, only one-third had been prescribed any antidepressant medication, and very few had taken a therapeutic dose for an adequate period. Very few had received psychological treatment or had been referred to mental health services. Most were receiving no potentially effective therapy.

To assess the acceptability to patients of a diagnostic interview for depression (Structured Clinical Interview for DSM-IV; SCID) conducted over the telephone to their homes.Postal questionnaire survey of patients who had attended an oncology outpatient clinic where they had scored high on a screening questionnaire and had subsequently undergone an SCID interview over the telephone.Of the 224 patients telephoned, five refused the diagnostic interview. Of the 219 who were interviewed, 184 satisfactorily completed and returned the postal questionnaire (84% response rate). Only 17% reported the interview to be distressing. Ninety-four percent of all questionnaire respondents and 84% (n=31) of those who reported the interview to have been distressing endorsed the item "Had I known in advance what answering the questions would have been like for me, I would still have agreed to take part". Perceiving the interview as distressing was associated with having major depression (P.001). Forty-seven percent said that, given the choice, they would have preferred a face-to-face interview.Telephone-administered diagnostic interviews are acceptable to most cancer patients and may even be preferred to face-to-face interviews at the hospital. This finding, together with the existing evidence of its validity, should encourage the use of telephone diagnostic interviews for depression, particularly when face-to-face interviews are impracticable, in both research studies and clinical practice. Indeed, a substantial proportion of patients may actually prefer them.

In cross-national comparisons based on questionnaires, accurate translations are necessary to obtain valid results. Differential item functioning (DIF) analysis can be used to test whether translations of items in multi-item scales are equivalent to the original. In data from 10,815 respondents representing 10 European languages we tested for DIF in the nine translations of the EORTC QLQ-C30 emotional function scale when compared to the original English version. We tested for DIF using two different methods in parallel, a contingency table method and logistic regression. The DIF results obtained with the two methods were similar. We found indications of DIF in seven of the nine translations. At least two of the DIF findings seem to reflect linguistic problems in the translation. 'Imperfect' translations can affect conclusions drawn from cross-national comparisons. Given that translations can never be identical to the original we discuss how findings of DIF can be interpreted and discuss the difference between linguistic DIF and DIF caused by confounding, cross-cultural differences, or DIF in other items in the scale. We conclude that testing for DIF is a useful way to validate questionnaire translations.

Research has shown a widespread need for written information on topics related to familial risk of breast cancer amongst women who have been living with an increased risk of the disease for several years. This article describes the development of a psychoeducational intervention designed to meet the needs of these women. Following a review of the literature and existing information resources, a multidisciplinary group developed a written information pack consisting of scientific and psychosocial (self-help) information with the aim of improving knowledge and reducing cancer worry. The information pack has been evaluated by seven independent health professionals and piloted on eight women at increased risk of breast cancer. Aspects of readability and presentation have been considered. The results of a randomised controlled trial of the intervention, which will inform the current provision of clinical services for these women, will be reported elsewhere.

A study was undertaken to describe, evaluate and categorise the social problems experienced by cancer patients. Ninety-six adult cancer patients at all stages of disease participated in either a telephone focus group discussion, a face to face focus group or an individual interview which were tape recorded and transcribed. Six experts analysed the transcripts. A total of 32 social problems were identified categorized under eight headings plus four single items. The categories were: problems with (1) managing in the home, (2) health and welfare services, (3) finances, (4) employment, (5) legal matters, (6) relationships, (7) sexuality and body image and (8) recreation. Problems with relationships and communication were the most frequently reported with financial, employment, body image and domestic problems also being widely endorsed. Female groups, younger patient groups and groups where the aim of treatment was palliative reported more social problems than other groups. Social problems are common and important to cancer patients. The social problems identified in this study will contribute to an item pool generated for developing a Social Problems Inventory that may be included in patient centred assessment as part of routine oncology practice. British Journal of Cancer (2002) 87, 1099–1104. doi:10.1038/sj.bjc.6600642 www.bjcancer.com © 2002 Cancer Research UK

The objective was to describe NHS cancer genetic counselling services and compare UK regions. The study design was a cross-sectional study over 4 weeks and attendee survey. The setting was 22 of the 24 regional cancer genetics services in the UK NHS. Participants were individuals aged over 18 attending clinics at these services. Outcome measures were staff levels, referral rates, consultation rates, follow-up plans, waiting time. There were only 11 dedicated cancer geneticists across the 22 centres. Referrals were mainly concerned with breast (63%), bowel (18%) and ovarian (12%) cancers. Only 7% of referrals were for men and 3% were for individuals from ethnic minorities. Referral rates varied from 76 to 410 per million per annum across the regions. Median waiting time for an initial appointment was 19 weeks, ranging across regions from 4 to 53 weeks. Individuals at population-level genetic risk accounted for 27% of consultations (range 0%, 58%). Shortfalls in cancer genetics staff and in the provision of genetic testing and cancer surveillance have resulted in large regional variations in access to care. Initiatives to disseminate referral and management guidelines to cancer units and primary care should be adequately resourced so that clinical genetics teams can focus on the genetic testing and management of high-risk families. © 2001 Cancer Research Campaign http://www.bjcancer.com

This study investigated the psychosocial outcome of prophylactic oophorectomy versus regular screening in women at increased risk of ovarian cancer. Women who had undergone prophylactic oophorectomy (n=29) were compared with women who remained on the ovarian screening programme (n=28). Assessments were made retrospectively by postal questionnaire. The surgical group showed significantly poorer functioning on two sub-scales of the Short Form (SF)-36 Health Status Questionnaire (role-emotional (p=0.04) and social functioning (p=0.01)), and there was a trend (p=0.06) for them to report more menopausal symptoms. General Health Questionnaire (GHQ) scores were significantly higher (p=0.03) in the surgical group. There were no significant differences between the groups for cancer worry or sexual functioning. Experience of the operation was better (p=0.01) and incidence of self-reported post-operative problems was lower (p=0.02) for women who had undergone the 'keyhole' rather than an 'open' procedure. Being pre-menopausal at the time of surgery predicted higher GHQ (p=0.04) and longer subjective recovery time (p=0.04). Women who have undergone prophylactic oophorectomy may have more physical and emotional symptoms than women who remain on an ovarian cancer screening programme, and may report equivalent levels of cancer worry. Those who are pre-menopausal at the time of the operation may be particularly vulnerable to psychological distress and take longer to recover post-operatively. A larger prospective study is needed to evaluate the casual versus causal role of oophorectomy in these findings, and the extent to which it allays patients' fear of cancer.