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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.

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

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.

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.

(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.

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.

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.

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.

Research to date has mainly focused on the short-term psychological impact of genetic risk counselling for breast cancer. This study aimed to explore the long-term consequences for women of being informed about an increased risk of breast cancer in terms of: the effect on their everyday lives, their coping strategies and their unmet needs in terms of the current service. The participants were 25 women with a family history of breast cancer who had received genetic risk counselling and had consequently been receiving clinical surveillance for at least 2 years. They took part in one of seven telephone focus groups and subsequently completed a feedback questionnaire. Transcripts of the focus groups were qualitatively analysed by three independent researchers with inter-rater agreement between pairs of raters ranging from Kappa=0.61-0.79. Six key issues emerged from the data, which provide an important insight into the long-term consequences of living with an increased risk of breast cancer concerning: (1) psychological adaptation, (2) behavioural adaptation, (3) family issues, (4) clinical surveillance, (5) provision of information, and (6) peer support. These findings, together with the quantitative results of the feedback questionnaire, have clinical implications that require further investigation in larger scale quantitative research. Copyright © 2000 John Wiley & Sons, Ltd.

A video of introductory information about inherited susceptibility to breast cancer was made in consultation with clinicians in four Scottish cancer family clinics. One hundred and twenty-eight women, newly referred for breast cancer risk counselling were randomized to receive the video before (n = 66) or after (n = 62) counselling. Data were collected before randomization at clinic and by postal follow-up at 1 month. The Video Before group had shorter consultations with the breast surgeon (mean = 11.8 min+/-5.4 vs 14.6+/-7.2 for the Video After group). There was no difference between the groups in the accuracy of their risk estimate after counselling, although the Video Before group scored higher for self-reported (Z= 3.65, d.f. = 1, P < 0.01) and objectively assessed understanding (Z= 2.91, d.f. = 1, P < 0.01). At 1 month follow-up, the Video Before group were less likely to underestimate their risk estimate (38% vs 18%; chi2 = 4.62, d.f. = 1, P< 0.05), but there was then no difference between the groups in subjective or objective understanding. Use of the video was not associated with increased distress (GHQ, Spielberger State Anxiety) and was associated with greater satisfaction with the information given at the clinic. This study supports the value of videotape as a method of giving information to prepare women for breast cancer risk counselling. Observations of misunderstandings and distress emphasize the video should be seen as an aid to, not a substitute, for communications at the clinic.

Quality of life (QL) assessment is now regarded as desirable, if not mandatory, by agencies supporting cancer clinical trials around the world, yet doubts persist about the relevance of QL data to clinical practice. A plethora of QL measures is available but the quality of published work remains suboptimal. The appropriate choice of instrument is essential if outcome measures are to be valid and clinically meaningful. This paper reviews the considerations which should determine the choice of QL questionnaire and, taking the specific example of the EORTC approach, aims to provide users with an update on the current state of the art in the development of cancer-specific QL questionnaires.

In this paper the psychometric properties of the multidimensional fatigue inventory (MFI-20) are established further in cancer patients. The MFI is a 20-item self-report instrument designed to measure fatigue. It covers the following dimensions: general fatigue, physical fatigue, reduced activity, reduced motivation and mental fatigue. The instrument was used in a Dutch and Scottish sample of cancer patients receiving radiotherapy. The dimensional structure was assessed using confirmatory factor analyses (Lisrel's unweighted least-squares method). The hypothesised five-factor model appeared to fit the data in both samples (adjusted goodness of fit; AGFI: 0.97 and 0.98). Internal consistency of the separate scales was good in both the Dutch and Scottish samples with Cronbach's alpha coefficients ranging from 0.79 to 0.93. Construct validity was assessed by correlating the MFI-20 to activities of daily living, anxiety and depression. Significant relations were assumed. Convergent validity was investigated by correlating the MFI scales with a visual analogue scale measuring fatigue and with a fatigue-scale derived from the Rotterdam Symptom Checklist. Results support the validity of the MFI-20. The highly similar results in the Dutch and Scottish sample suggest that the portrayal of fatigue using the MFI-20 is quite robust.

Cognitive function items are increasingly included in quality of life measures, and complaints of concentration and memory difficulties are often reported by cancer patients. The aim of this study was to examine the factors influencing patients' level of complaint by comparing subjective reports with objective test performance of a sample of adult lymphoma patients, disease-free and > or = 6 months after treatment. There was no significant difference between complainers and non-complainers in sociodemographic or clinical characteristics or in their performance on standard neuropsychometric tests of concentration and memory. Those reporting concentration and memory difficulties had significantly higher scores on measures of anxiety, depression and fatigue. This calls into question the validity of including cognitive function items in self-report quality of life measures. Patients who report concentration and memory difficulties should be screened for clinically significant and potentially remediable mood disorder. Objective testing remains the method of choice for assessing higher mental function.

Background In 1986, the European Organization for Research and Treatment of Cancer (EORTC) initiated a research program to develop an integrated, modular approach for evaluating the quality of life of patients participating in international clinical trials. Purpose We report here the results of an international field study of the practicality, reliability, and validity of the EORTC QLQ-C30, the current core questionnaire. The QLQ-C30 incorporates nine multi-item scales: five functional scales (physical, role, cognitive, emotional, and social); three symptom scales (fatigue, pain, and nausea and vomiting); and a global health and quality-of-life scale. Several single-item symptom measures are also included. Methods The questionnaire was administered before treatment and once during treatment to 305 patients with nonresectable lung cancer from centers in 13 countries. Clinical variables assessed included disease stage, weight loss, performance status, and treatment toxicity. Results The average time required to complete the questionnaire was approximately 11 minutes, and most patients required no assistance. The data supported the hypothesized scale structure of the questionnaire with the exception of role functioning (work and household activities), which was also the only multi-item scale that failed to meet the minimal standards for reliability (Cronbach's alpha coefficient > or = .70) either before or during treatment. Validity was shown by three findings. First, while all interscale correlations were statistically significant, the correlation was moderate, indicating that the scales were assessing distinct components of the quality-of-life construct. Second, most of the functional and symptom measures discriminated clearly between patients differing in clinical status as defined by the Eastern Cooperative Oncology Group performance status scale, weight loss, and treatment toxicity. Third, there were statistically significant changes, in the expected direction, in physical and role functioning, global quality of life, fatigue, and nausea and vomiting, for patients whose performance status had improved or worsened during treatment. The reliability and validity of the questionnaire were highly consistent across the three language-cultural groups studied: patients from English-speaking countries, Northern Europe, and Southern Europe. Conclusions These results support the EORTC QLQ-C30 as a reliable and valid measure of the quality of life of cancer patients in multicultural clinical research settings. Work is ongoing to examine the performance of the questionnaire among more heterogenous patient samples and in phase II and phase III clinical trials.

The sexual function of cancer patients may be compromised by their disease or treatment. This is infrequently assessed as an outcome variable and methodological differences between reported studies make comparison difficult. Where sexual function is being assessed as one dimension of a more comprehensive assessment of quality of life, a single item concerned with frequency of intercourse or satisfaction may be sufficient, but many studies require more detailed information. Methods developed for clinical assessment of sexual dysfunction are generally too long and detailed for this purpose. The best developed scales for cancer patients are embedded in lengthy and expensive questionnaires. A pool of items can be identified from which a scale could be derived to assess the relevant aspects of sexual experience. The development of an appropriate and psychometrically sound scale is now required to encourage greater consideration of the impact of disease and treatment on cancer patients' sexual function.

Between 1983 and 1985 111 patients with hemispheric gliomas were treated with whole brain irradiation in the Department of Clinical Oncology in Edinburgh. Of these, 52 patients were treated with mixed photons and neutrons and 51 patients with photons only. The 5-year actuarial survival is 6.1%. Age and tumour grade were confirmed as significant prognostic factors (P less than 0.001). Assessment of all six adult survivors forms the basis of the morbidity report. All survivors had a degree of ataxia, spasticity and most of them showed radiological evidence of brain damage. Psychometric assessment confirmed impairment of cognitive function in all patients, as well as disruption of the socioeconomic units surrounding them. This could have been partially relieved if support was available.

Better post-treatment rehabilitation could be achieved by gynaecological cancer patients if their special information and support needs were more satisfactorily addressed. A baseline measure of current local nursing practice across the treatment spectrum using a self-report questionnaire was completed by 83 nurses. Findings reveal knowledge deficits in treatment rationales, procedures and outcomes, with significant differences between nurses in the surgical (gynaecology) and non-surgical (oncology) settings. Competency to meet patients’ physical needs is reported in both areas. While awareness of patients’ and their partners’ integral psychosocial and sexual concerns is demonstrated, nurses recognise their limited knowledge and inexperience in dealing with them usefully. Self-identified learning needs are stated. Results will inform the content of a training and development package to be devised and facilitated by a Nurse Specialist in Gynaecological Oncology. Improvements in liaison between nurses in the different treatment sites will be made. Impact on nursing practice will be measured by repeat assessment at 1 year.

Department of Obstetrics and Gynecology, University of Graz, Auenbruggerplatz 14, A-8036 Graz, Austria EORTC Quality of Life Unit, EORTC Data Centre, Brussels, Belgium Imperial Cancer Research Fund Psychology Research Group, Western General Hospital, Edinburgh, UK Sahlgrenska University Hospital, Gotenborg, Sweden Hospital of Navarre, Pamplona, Spain Hotel Dieu, Paris, France Department of Biological Psychiatry, University Innsbruck, Austria Department of Obstetrics and Gynecology, University of Rijeka, Croatia

PURPOSE: To evaluate alternative automated methods of collecting data on quality of life (QOL) in cancer patients. After initial evaluation of a range of technologies, we compared computer touch-screen questionnaires with paper questionnaires scanned by optical reading systems in terms of patients' acceptance, data quality, and reliability. PATIENTS AND METHODS: In a randomized cross-over trial, 149 cancer patients completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire–Core 30, version 2.0 (EORTC QLQ-C30), and the Hospital Anxiety and Depression Scale (HADS) on paper and on a touch screen. In a further test-retest study, 81 patients completed the electronic version of the questionnaires twice, with a time interval of 3 hours between questionnaires. RESULTS: Fifty-two percent of the patients preferred the touch screen to paper; 24% had no preference. The quality of the data collected with the touch-screen system was good, with no missed responses. At the group level, the differences between scores obtained with the two modes of administration of the instruments were small, suggesting equivalence for most of the QOL scales, with the possible exception of the emotional, fatigue, and nausea/vomiting scales and the appetite item, where patients tended to give more positive responses on the touch screen. At the individual patient level, the agreement was good, with a kappa coefficient from 0.57 to 0.77 and percent global agreement from 61% to 97%. The electronic questionnaire had good test-retest reliability, with correlation coefficients between the two administrations from 0.78 to 0.95, kappa coefficients of agreement from 0.55 to 0.90, and percent global agreement from 56% to 100%. CONCLUSION: Computer touch-screen QOL questionnaires were well accepted by cancer patients, with good data quality and reliability.