E. M. A. Smets

The multidimensional Fatigue Inventory (MFI) psychometric qualities of an instrument to assess fatigue

The Multidimensional Fatigue Inventory (MFI) is a 20-item self-report instrument designed to measure fatigue. It covers the following dimensions: General Fatigue, Physical Fatigue, Mental Fatigue, Reduced Motivation and Reduced Activity. This new instrument was tested for its psychometric properties in cancer patients receiving radiotherapy, patients with the chronic fatigue syndrome, psychology students, medical students, army recruits and junior physicians. We determined the dimensional structure using confirmatory factor analyses (LISRELs unweighted least squares method). The hypothesized five-factor model appeared to fit the data in all samples tested (AGFIs > 0.93). The instrument was found to have good internal consistency, with an average Cronbachs alpha coefficient of 0.84. Construct validity was established after comparisons between and within groups, assuming differences in fatigue based on differences in circumstances and/or activity level. Convergent validity was investigated by correlating the MFI-scales with a Visual Analogue Scale measuring fatigue (0.22 < r < 0.78). Results, by and large, support the validity of the MFI.

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.

Fatigue and radiotherapy: (A) experience in patients undergoing treatment.

Cancer patients undergoing radiotherapy frequently report fatigue. However, knowledge of the importance of fatigue for these patients and of the factors associated with their fatigue is limited. The aim of the current investigation was to gain more insight into fatigue as related to radiotherapy by answering the following questions. First, how is the experience of fatigue best described? Secondly, to what extent is fatigue related to sociodemographic, medical (including treatment), physical and psychological factors? Finally, is it possible to predict which patients will suffer from fatigue after completion of radiotherapy? Patients with different types of cancer receiving radiotherapy with curative intent (n = 250) were interviewed before and within 2 weeks of completion of radiotherapy. During treatment, patients rated their fatigue at 2-weekly intervals. Results indicate a gradual increase in fatigue over the period of radiotherapy and a decrease after completion of treatment. Fatigue scores obtained after radiotherapy were only slightly, although significantly, higher than pretreatment scores. After treatment, 46% of the patients reported fatigue among the three symptoms that caused them most distress. Significant associations were found between post-treatment fatigue and diagnosis, physical distress, functional disability, quality of sleep, psychological distress and depression. No association was found between fatigue and treatment or personality characteristics. Multivariate regression analysis demonstrated that the intensity of pretreatment fatigue was the best predictor of fatigue after treatment. In view of this finding, a regression analysis was performed to gain more insight into the variables predicting pretreatment fatigue. The degree of functional disability and impaired quality of sleep were found to explain 38% of the variance in fatigue before starting radiotherapy. Fatigue in disease-free patients 9 months after treatment is described in paper (B) in this issue.

Improving the assessment of (in)patients' satisfaction with hospital care.

Background.A self-report questionnaire is the most widely used method to assess (in)patients’ satisfaction with (hospital) care. However, problems like nonresponse, missing values, and skewed score distributions may threaten the representativeness, validity, and reliability of results. We investigated which of alternative item-response formats maximizes desired outcomes. Design.Five formats were compared on the basis of sample characteristics, psychometric properties at the scale and item levels, and patients’ opinions of the questionnaire. Subjects.Consecutively discharged patients (n=784) were sampled, of which a representative (sex, age, length of hospital stay) subsample of 514 (65%) responded. Measures.A 54-item satisfaction questionnaire addressing 12 aspects of care was used. Patients responded using either a 10-step evaluation scale ranging from “very poor” to “excellent” (E10), a 5-step evaluation scale ranging from “poor” to “excellent” (E5), or a 5-step satisfaction scale ranging from “dissatisfied” to “very satisfied” (S5). The 5-step scales were administered with response options presented as either boxed scale steps to be marked or words to be circled. Results.E5 scales yielded lower means than S5 scales. However, at the item level, the S5 scale showed better construct validity, more variability, and less peaked score distributions. Circling words yielded fewer missing item scores than marking boxes. The E5 scale showed more desirable score distributions than the E10 scale, but construct validity and reliability were lower. Conclusions.No large differences among formats were found. However, if individual items are important carriers of information, a (5-step) satisfaction response scale, with response options presented in words next to each item, appears to be the optimal format.

Under what conditions do patients want to be informed about their risk of a complication? A vignette study

Background: Discussing treatment risks has become increasingly important in medical communication. Still, despite regulations, physicians must decide how much and what kind of information to present. Objective: To investigate patients’ preference for information about a small risk of a complication of colonoscopy, and whether medical and personal factors contribute to such preference. To propose a disclosure policy related to our results. Design: Vignettes study. Setting: Department of Gastroenterology, Academic Medical Centre, the Netherlands. Patients: 810 consecutive colonoscopy patients. Intervention: A home-sent questionnaire containing three vignettes. Vignettes varied in the indication for colonoscopy, complication severity and level of risk. Patients were invited to indicate their wish to be informed and the importance of such information. In addition, sociodemograhic, illness-related and psychological characteristics were assessed. Main outcome measurements: Wish to be informed and importance of information. Results: Of 810 questionnaires, 68% were returned. Patients generally wished to be informed about low-risk complications, regardless of the indication for colonoscopy or the severity of the complication. The level of risk did matter, though (OR = 2.48, SE = 0.28, p = 0.001). The information was considered less important if done for population screening purposes or diagnosis of colon cancer, if the complication was less severe (bleeding) and if the risk was smaller (0.01% and 0.1%). Patients’ information preference was also related to age, mood and coping style. Limitations: Difficulty of vignettes. Conclusions: Patients generally wish to be informed about all possible risks. However, this might become uninformative. A stepwise approach is suggested.

Smoking Cessation Interventions in Cardiovascular Patients

OBJECTIVES To review current evidence for the effectiveness of smoking cessation interventions in cardiovascular patient populations. DESIGN AND MATERIALS Studies were obtained from systematic reviews of the Cochrane Tobacco Addiction Review Group. Twelve Cochrane reviews related to secondary prevention in a variety of populations were used to extract eligible studies. Studies were eligible when they considered smokers diagnosed with symptomatic cardiovascular disease. METHODS Data concerning the comparison between the intervention of interest and a placebo or standard treatment group were derived from eligible papers. Based on these data, Absolute Risk Reduction figures were calculated to express the effectiveness of each intervention on smoking cessation. RESULTS We found 12 studies examining smoking cessation interventions in cardiovascular patients. Five studies reported significant results. No evidence was found for Nicotine Replacement Therapy or other pharmacology to be effective, neither for self-help materials, group, individual or telephone counseling. There is limited evidence for physicians advice and nurse-delivered interventions to be effective. CONCLUSIONS Smoking cessation studies in cardiovascular patients are scarce. The available studies show very limited effects. The reasons for the lack of success of smoking cessation strategies in these patients remain unclear. Further research is needed to find effective cessation strategies for patients with cardiovascular diseases.

A comparison of counselee and counselor satisfaction in reproductive genetic counseling

Important insights in the process of genetic counseling can be provided by establishing levels of satisfaction. The aim of our study was to compare counselees’ and counselors’ satisfaction with the initial consultation in reproductive genetic counseling and to gain insight into the factors associated with their contentment. One hundred and fifty‐one women and 11 counselors participated in this study. Pre‐test questionnaires included counselees’ socio‐demographic, physical and psychological characteristics, i.e. their degree of worry, expectations, preferred participation in decision making and experienced degree of control. Post‐visit questionnaires asked for counselees’ and counselors’ satisfaction, counselees’ participation in decision making and counselees’ Perceived Personal Control (PPC). Little difference was found between counselees’ and counselors’ overall visit‐specific satisfaction (mean 79 vs 74, respectively, on a visual analogue scale from 0 to 100). The correlation between counselees’ and counselors’ satisfaction was medium sized (r = 0.26, p < 0.01). Counselees’ satisfaction was positively associated with being pregnant and with their post‐visit PPC. Counselors’ satisfaction was positively associated with counselees’ post‐visit PPC. No other counselee and counselor related variables appeared to be associated with satisfaction, nor was the duration of the consultation. Our findings suggest that, although both groups were satisfied with the consultation, counselees and counselors do not always have equal perceptions of the consultation process and may form their evaluation in different ways. In the assessment of quality of care, evaluation of both counselees’ and counselors’ satisfaction deserves more attention.

Genetic counseling for familial conditions during pregnancy: an analysis of patient characteristics

Reproductive genetic counseling for a familial genetic risk factor preferably takes place before conception. However, of the women with a family history of genetic conditions who attend our department of clinical genetics, about 10–20% attend for the first time during a pregnancy. The current study aims to explore patient‐related factors that may affect this late timing of reproductive genetic counseling. Consecutive pregnant (n = 100) and non‐pregnant (n = 84) women visiting the department of clinical genetics for a genetic risk factor which was not age related completed a questionnaire immediately prior to the consultation. The questionnaire asked for (a) background characteristics, i.e. socio‐demographic, obstetric, and disease characteristics (b) cognitive factors, i.e. initiative of referral, knowledge of the risk factor involved, risk perception, worry, child wish, attitudes toward abortion, and preferred participation in decision making, and (c) reasons for the timing of the consultation and for seeking genetic counseling. Pregnant women appeared to be higher educated, considered their children more often as healthy and were less often affected themselves, as compared to non‐pregnant women. They also estimated their chance of having an affected child as lower, and they worried less. Furthermore, the initiative for referral was taken less often by the pregnant woman herself and more often by a medical worker. There were no major differences between the two study groups in knowledge, perceived severity of the risk factor, child wish, attitudes toward abortion, desired participation in decision making, and reasons to seek genetic counseling. Women indicated no specific reasons for their timing of referral for reproductive genetic counseling, e.g. during vs before pregnancy. Our data suggest that this timing of referral is not influenced predominantly by the womens level of knowledge. Rather, womens estimation of genetic risks and their degree of worry, which may be in accordance with the actual risk figures, seem to play a role in seeking genetic counseling. Although further studies are required, a more active role of health care providers seems warranted if we want to prevent genetic counseling for familial genetic conditions during pregnancy as much as possible.

Delphi survey to identify topics to be addressed at the initial follow-up consultation after oesophageal cancer surgery

There is no consensus among patients and healthcare professionals (HCPs) on the topics that need to be addressed after oesophageal cancer surgery. The aim of this study was to identify these topics, using a two‐round Delphi survey.

Patients with oesophageal cancer report elevated distress and problems yet do not have an explicit wish for referral prior to receiving their medical treatment plan.

This study aims to identify patients with oesophageal cancers level of distress, type of problems, and wish for referral prior to treatment. To identify the clinical relevance of patients with oesophageal cancers level of distress and type of problems, we build models to predict elevated distress, wish for referral, and overall survival.