Measuring psychological and physical distress in cancer patients: structure and application of the Rotterdam Symptom Checklist.

Use of the Rotterdam Symptom Checklist (RSCL) to measure psychological and physical distress as experienced by cancer patients, is discussed in this paper. The stability of the structure of the RSCL was assessed in principal component analyses in three studies: one concerning cancer patients during either chemotherapy or follow-up (n = 86), one done in patients undergoing chemotherapy for advanced ovarian cancer (n = 56), and the third dealing with cancer patients under treatment, disease-free 'patients', and 'normal' controls (n = 611). The psychological dimension proved to be stable across populations. A scale based on this factor was highly reliable (Cronbach's alpha 0.88-0.94). The physical distress is reflected by several dimensions in a homogeneous population (pain, fatigue, gastrointestinal complaints) and undimensionally in a heterogeneous population. Reliability of the physical distress scales is good (0.71-0.88). The current components of the RSCL and the use of individual and disease specific symptoms are discussed

Application of the multidimensional fatigue inventory (MFI-20) in cancer patients receiving radiotherapy.

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

Fatigue in cancer patients.

In this paper an overview is presented on what is currently known of fatigue in cancer. Fatigue is considered to be a multi-dimensional concept, that should be measured as such. However, fatigue has been assessed mostly by single items in general symptom checklists. The few specific instruments that have been used in cancer patient populations are discussed. The majority of cancer patients, about 70%, report feelings of fatigue during radio- or chemotherapy. Follow-up results show that, at least for some diagnoses, patients remain fatigued long after treatment has ended. Somatic and psychological mechanisms that have been proposed to explain fatigue are discussed. It is argued that the significance of the results obtained on fatigue as a symptom in cancer depends on comparison with other patient and non-patient populations. Also the occurrence of a response-shift has to be considered, leading to under reporting of fatigue. Finally, possible interventions to decrease feelings of fatigue are presented

Advanced breast cancer and its prevention by screening.

In discussions on breast cancer screening, much attention has been focussed on the possible morbidity generated by screening. Favourable effects like the prevention of advanced disease seem underestimated, probably because quantification is that difficult. To analyse the amount of care and treatment given to women with advanced breast cancer, we report on patients followed from first recurrence until death using patient files and national sources. A random sample of 60 female cases from computerised registries of two cancer centres and a sample of 20 cases from a non-computerised hospital registry was taken. A total of 68 patient files were sufficiently documented. A woman with advanced breast cancer is estimated to have a 39% loss in utility compared to a healthy woman (range 27-45%). Hormonal treatment is the main modality during 14 and chemotherapy during 4 months. Total medical cost from diagnosis of advanced disease until death amounts to 17,100 US dollars, or 21,000 when including extramural cost. The effect of breast cancer screening by preventing the occurrence of advanced disease is quantified. The resulting gain in quality of life contributes 70% of the total gain in quality of life. In the long run, almost half of the annual cost of screening will be offset by savings in the cost for advanced disease. Only the changes in palliative surgery and/or radiotherapy will be small in contrast to primary treatment changes. Besides the mortality reduction, screening is justified by the improvements in quality of life and cost savings for women prevented from reaching advanced disease

Follow-up of colorectal cancer patients: quality of life and attitudes towards follow-up.

The aims of our study were to assess the effect of follow-up on the quality of life of colorectal cancer patients and to assess the attitudes of patients towards follow-up as a function of patient characteristics. Patients who had been treated with curative intent were selected from four types of hospitals. Eighty-two patients were interviewed using a structured questionnaire, whereas 130 patients received the questionnaire by mail. To assess the effect of follow-up on the quality of life, the interviewed patients were randomly allocated to three groups and interviewed at different times in relation to the follow-up visit. Analysis did not show an effect of the follow-up visit on quality of life. Patients reported a positive attitude towards follow-up: it reassured them, they judged the communication with the physician to be positive, and they experienced only slight nervous anticipation and few other disadvantages. Patients reported a strong preference for follow-up, and a large majority would prefer follow-up even if it would not lead to earlier detection of a recurrence. Apart from living situation, no patient characteristics were clearly associated with the attitude towards follow-up. Implications for clinical practice are discussed

Is personality a determinant of patient satisfaction with hospital care?

Objective. We investigated to what extent personality is associated with patient satisfaction with hospital care. A sizeable association with personality would render patient satisfaction invalid as an indicator of hospital care quality. Design. Overall satisfaction and satisfaction with aspects of care were regressed on the Big Five dimensions of personality, controlled for patient characteristics as possible explanatory variables of observed associations. Participants. A total of 237 recently discharged inpatients aged 18-84 years (M = 50, SD = 17 years), 57% female, who were hospitalized for an average of 8 days. Instruments. The Satisfaction with Hospital Care Questionnaire addressing 12 aspects of care ranging from admission procedures to discharge and aftercare and the Five-Factor Personality Inventory assessing a person's standing on Extraversion, Agreeableness, Conscientiousness, Emotional stability, and Autonomy. Results. Agreeableness significantly predicted patient satisfaction in about half of the scales. After controlling for shared variance with age and educational level, the unique contribution of Agreeableness shrank to a maximum of 3-5% explained variance. When one outlier was dropped from the analysis, the contribution of Agreeableness was no longer statistically significant. Conclusion. Patient satisfaction seems only marginally associated with personality, at least at the level of the broad Big Five dimension

Understanding Palliative Cancer Chemotherapy: About Shared Decisions and Shared Trajectories

Most models of patient-physician communication take decision-making as a central concept. However, we found that often the treatment course of metastatic cancer patients is not easy to describe in straightforward terms used in decision-making models but is instead frequently more erratic. Our aim was to analyse these processes as trajectories. We used a longitudinal case study of 13 patients with metastatic colorectal and pancreatic cancer for whom palliative chemotherapy was a treatment option, and analysed 65 semi-structured interviews. We analysed three characteristics of the treatment course that contributed to the ‘erraticness’ of the course: (1) The treatment (with or without chemotherapy) contained many options; (2) these options were not stable entities to be decided upon, but changed identity over the course of treatment, and (3) contrary to the closure (option X means no option Y, Z, etc.) a decision implies, the treatment course was a continuous process in which options instead remained open. When the treatment course is characterised by these many and changeable options that do not result in closure, the shared decision-making model should take these into account. More attention needs to be paid to the erratic character of the process in which the doctor has to provide continuous information that is related to the changing situation of the patient; also, flexibility in dealing with protocols is warranted, as is vigilance about the overall direction of the process

Fatigue and radiotherapy: (B) experience in patients 9 months following treatment.

Little is known regarding the prevalence and course of fatigue in cancer patients after treatment has ended and no recurrence found. The present study examines fatigue in disease-free cancer patients after being treated with radiotherapy (n = 154). The following questions are addressed. First, how do patients describe their fatigue 9 months after radiotherapy and is this different from fatigue in a nonselective sample from the general population (n = 139)? Secondly, to what degree is fatigue in patients associated with sociodemographic, medical, physical and psychological factors? Finally, is it possible to predict which patients will suffer from fatigue 9 months after radiotherapy? Results indicated that fatigue in disease-free cancer patients did not differ significantly from fatigue in the general population. However, for 34% of the patients, fatigue following treatment was worse than anticipated, 39% listed fatigue as one of the three symptoms causing them most distress, 26% of patients worried about their fatigue and patients' overall quality of life was negatively related to fatigue (r = -0.46). Fatigue in disease-free patients was significantly associated with: gender, physical distress, pain rating, sleep quality, functional disability, psychological distress and depression, but not with medical (diagnosis, prognosis, co-morbidity) or treatment-related (target area, total radiation dose, fractionation) variables. The degree of fatigue, functional disability and pain before radiotherapy were the best predictors of fatigue at 9-month follow-up, explaining 30%, 3% and 4% of the variance respectively. These findings are in line with the associations found with fatigue during treatment as reported in the preceding paper in this issue. The significant associations between fatigue and both psychological and physical variables demonstrate the complex aetiology of this symptom in patients and point out the necessity of a multidisciplinary approach for its treatment

Tradeoffs of Life: between Quality and Quantity Development of the QQ Questionnaire for Cancer Patient Attitudes

The patient's perspective is of prime concern in weighing the benefits and side effects of oncologic treatment. Little is known about patients' preference and attitudes. The authors developed a short questionnaire to assess patient attitudes concerning trade-offs between quality of life and length, or quantity, of life (the QQ Questionnaire). The questionnaire turned out to be feasible for use in various groups of cancer patients. In a factor analysis, the questionnaire was shown to consist of two factors, a Q(uality) and a L(ength) factor. Values of Cronbach's alpha for the Q and L scales (consisting of four items each) were 0.68 and 0.79, respectively. Younger patients and patients who have children assigned relatively more importance to striving for prolonged survival. Contrary to our expectation, no association was found between scores on the two scales and time tradeoff utility scores. The QQ Questionnaire can be used in research settings to study patient attitudes and the stability and determinants of patients' preference

Do patients’ information needs decrease over the course of radiotherapy?

PURPOSE: We aimed to investigate if cancer patients’ information needs decrease during radiotherapy and if so, which patient, consultation and radiation oncologist characteristics are associated with a decrease in information needs over time. METHODS: In this longitudinal study, patients (n = 104) completed a baseline questionnaire a week before the initial radiotherapy consultation, immediately following this initial consultation, and 1 week prior to the first follow-up visit, which took place on average 3–5 weeks after the initial visit. Besides information needs, measured by the Information Preference for Radiotherapy Patients scale, the questionnaire assessed patient, consultation and radiation oncologist characteristics. RESULTS: Information needs decreased over time, but remained at a high level. Being religious, being male, having low health literacy and higher perceived involvement during the consultation were all statistically significantly associated to a decrease in information needs on specific domains (e.g. procedures or side effects). CONCLUSIONS: Cancer patients’ information needs decline between the initial consultation and the first follow-up visit, but remain high. It is therefore advised to investigate the patients’ information needs at every radiotherapy visit and not rely on giving information just once. Furthermore, radiation oncologists should check if the information given at first consultation is understood and remembered. By those means, tailored information giving becomes possible