Development and feasibility of a web-based question prompt sheet to support information provision of health-related quality of life topics after oesophageal cancer surgery.

We developed a web-based question prompt sheet (QPS) to support information provision of health-related quality of life (HRQL) topics after oesophageal cancer surgery. The QPS was evaluated and updated in three consecutive studies. In Study 1, eight patients were guided in using the QPS. Feasibility was assessed by cognitive walkthrough, questionnaire and interview. We obtained 430 notes (217 negative, 213 positive) of patients' actions and or remarks, and 91 suggestions. With minor support, most patients were able to use the QPS. In Study 2, forty patients independently used and appraised a modified version of the QPS by questionnaire. All patients deemed the QPS to be usable and useful. In Study 3, 21 patients and three surgeons used the QPS in clinical practice. Clinical feasibility was assessed by the number of QPS sent to the researcher/surgeon. Patients and surgeons were surveyed and the follow-up consultation was audio-recorded. Surgeons were additionally interviewed. Twenty/fourteen patients sent their QPS to the researcher/surgeon. Five QPSs were read by the consultation surgeon. Patients considered the QPS usable and useful. Surgeons considered the QPS of added value and helpful in informing patients, but currently not clinically feasible due to increased consultation time.

How long do I have? Observational study on communication about life expectancy with advanced cancer patients.

OBJECTIVE: To examine how communication about life expectancy is initiated in consultations about palliative chemotherapy, and what prognostic information is presented. METHODS: Patients with advanced cancer (n=41) with a median life expectancy <1year and oncologists (n=6) and oncologists-in-training (n=7) meeting with them in consultations (n=62) to discuss palliative chemotherapy were included. Verbatim transcripts of audio-recorded consultations were analyzed using MAXqda10. RESULTS: Life expectancy was addressed in 19 of 62 of the consultations. In all cases, patients took the initiative, most often through direct questions. Estimates were provided in 12 consultations in various formats: the likelihood of experiencing a significant event, point estimates or general time scales of "months to years", often with an emphasis on the "years". The indeterminacy of estimates was consistently stressed. Also their potential inadequacy was regularly addressed, often by describing beneficial prognostic predictors for the specific patient. Oncologists did not address the reliability or precision of estimates. CONCLUSION: Oncologists did not initiate talk about life expectancy, they used different formats, emphasized the positive and stressed unpredictability, yet not ambiguity of estimates. PRACTICE IMPLICATIONS: Prognostic communication should be part of the medical curriculum. Further research should address the effect of different formats of information provision.

How can communication by oncologists enhance patients' trust? An experimental study.

BACKGROUND: Cancer patients need to trust their oncologist to embark in the process of oncologic treatment. Yet, it is unclear how oncologist communication contributes to such trust. The aim of this study was to investigate the effect of three elements of oncologists' communication on cancer patients' trust: conferring competence, honesty, and caring. METHODS: Eight videotaped consultations, 'vignettes', were created, reflecting an encounter between an oncologist and a patient with colorectal cancer. All vignettes were identical, except for small variations in the oncologist's verbal communication. Cancer patients (n = 345) were randomly assigned to viewing two vignettes, asked to identify with the patient and afterwards to rate their trust in the observed oncologist. The effects of competence, honesty, and caring on trust were established with multilevel analysis. RESULTS: Oncologist's enhanced expression of competence (ß = 0.17, 95% CI 0.08, 0.27; P < 0.001), honesty (ß = 0.30, 95% CI 0.20, 0.40; P < 0.001), as well as caring (ß = 0.36, 95% CI 0.26, 0.46; P < 0.001) resulted in significantly increased trust. Communication of honesty and caring also increased patients' expectation of operation success and reported willingness to recommend the oncologist. CONCLUSION(S): As hypothesized, oncologists can influence their patients' trust by enhanced conveyance of their level of competence, honesty, and caring. Caring behavior has the strongest impact on trust. These findings can be translated directly into daily clinical practice as well as in communication skills training.

Information gain in patients using a multimedia website with tailored information on anaesthesia.

BACKGROUND: The preoperative visit is an appropriate time to educate the patient on anaesthesia. The aim of this study was to determine if a website, as an information source for anaesthesia before the visit to the preoperative assessment clinic (PAC), increases patients' knowledge on anaesthesia. METHODS: A multimedia website was developed containing specific information about anaesthesia relevant to the patient. A questionnaire was developed to measure knowledge gain. Patients were divided into three groups: (i) those who read the existing brochure; (ii) those who looked at the new website; and (iii) a cluster of non-brochure and non-website users: those who did not read the brochure or website but had completed the questionnaire. An anaesthesiologist also informed all three groups during the preoperative visit at the PAC. RESULTS: Patients visiting the website had a higher educational level than others. A significant increase in knowledge was observed after using the website information compared with the other two groups (P<0.001). The group with higher education levels had higher knowledge gains, and the website independently contributed to the knowledge gain. CONCLUSIONS: A patient-tailored multimedia website is an effective way to support the information provided by the anaesthesiologist in order to inform patients about their upcoming anaesthetic procedure. The use of such a website gives a significant increase in knowledge compared with only spoken information, or spoken information combined with a brochure.

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.

Decision support for patients with early-stage breast cancer: effects of an interactive breast cancer CDROM on treatment decision, satisfaction, and quality of life.

PURPOSE: To investigate the effects of the Interactive Breast Cancer CDROM as a decision aid for breast cancer patients with a choice between breast conserving therapy (BCT) and mastectomy (MT). PATIENTS AND METHODS: Consecutive patients with stage I and II breast cancer were enrolled. A quasi-experimental, longitudinal, and pretest/posttest design was used. Follow-up was scheduled 3 and 9 months after discharge from the hospital. Control patients (n = 88) received standard care (oral information and brochures). The CDROM was provided to patients in the experimental condition (n = 92) as a supplement to standard procedures. Outcome variables were treatment decision, satisfaction, and quality of life (QoL). RESULTS: No effect on treatment decision was found. CDROM patients expressed more general satisfaction with information at 3 and 9 months (95% confidence interval for the difference (d) between the means (d: 4.1 to 12.5 and 5.7 to 14.2 respectively). CDROM patients were also more satisfied with their treatment decision at 3 and at 9 months (d: 0.1 to 0.4; 0.2 to 0.5). Moreover, at 9 months, CDROM patients were more satisfied with breast cancer-specific information (d: 0.9 to 16.5), the decision-making process (d: 0.1 to 0.4), and communication (d: 0.2 to 11.0). At 3 and 9 months, a positive effect was found on general health (d: 0.2 to 14.5 and 0.3 to 15.0). Moreover, at 9 months, CDROM patients reported better physical functioning (d: 5.1 to 19.8), less pain (d: -17.9 to -4.5), and fewer arm symptoms (d: -14.1 to -0.5). CONCLUSION: The Interactive Breast Cancer CDROM improved decision making in patients with early-stage breast cancer with a choice between BCT and MT, as evaluated in terms of patients' satisfaction and QoL.

Which chronic conditions are associated with better or poorer quality of life?

The objective of the present study is to compare the QL of a wide range of chronic disease patients. Secondary analysis of eight existing data sets, including over 15,000 patients, was performed. The studies were conducted between 1993 and 1996 and included population-based samples, referred samples, consecutive samples, and/or consecutive samples. The SF-36 or SF-24 were employed as generic QL instruments. Patients who were older, female, had a low level of education, were not living with a partner, and had at least one comorbid condition, in general, reported the poorest level of QL. On the basis of rank ordering across the QL dimensions, three broad categories could be distinguished. Urogenital conditions, hearing impairments, psychiatric disorders, and dermatologic conditions were found to result in relatively favorable functioning. A group of disease clusters assuming an intermediate position encompassed cardiovascular conditions, cancer, endocrinologic conditions, visual impairments, and chronic respiratory diseases. Gastrointestinal conditions, cerebrovascular/neurologic conditions, renal diseases, and musculoskeletal conditions led to the most adverse sequelae. This categorization reflects the combined result of the diseases and comorbid conditions. If these results are replicated and validated in future studies, they can be considered in addition to information on the prevalence of the diseases, potential benefits of care, and current disease-specific expenditures. This combined information will help to better plan and allocate resources for research, training, and health care.

Feasibility and effects of decision aids.

Decision aids for patients have recently been introduced in health care. A literature review was conducted to address the following research questions: 1) which types of decision aids have been developed?; 2) to what extent are they feasible, and acceptable to patients and health care providers?; 3) do decision aids affect the decision-making process and patients' outcomes? Thirty non-controlled (e.g., one-group-only designs) and controlled studies (e.g., randomized experimental designs) were identified. Decision aids were found to be feasible and acceptable to patients and to increase the agreement between patients' values and decisions and patients' knowledge. The effects of decision aids on decisions and on patients' outcomes, including decision uncertainty, satisfaction, and health, have rarely been addressed. When studied, the beneficial effects of decision aids on these outcomes appear to be rather modest. Implications for future development of decision aids and the design of studies are discussed.

Predictors of health care use in patients with Parkinson's disease: a longitudinal study.

PURPOSE: To predict health care use in patients with Parkinson's disease. METHODS: The health care use of 235 patients with Parkinson's disease was studied twice over the course of 1 year. Use consisted of visits to the neurologist and general practitioner (GP) and use of a physiotherapist, a psychotherapist, or home care nurse. The effects of both prior and concurrent sociodemographic, disease-related, and psychosocial characteristics on health care use were examined. RESULTS: Patients who were living with others and patients with private health insurance paid significantly (p <0.01) more visits to their neurologists. For visits to the general practitioner, disease severity and poor quality of life, as measured by the Parkinson's Disease Quality of Life questionnaire (PDQL), were the most important predictors. Other sociodemographic and disease-related characteristics, such as age, gender, and disease duration, were not related to doctor visits. Physiotherapy was associated with disease severity and poor quality of life. Lack of social support, depression, and poor quality of life were correlated with psychotherapy, whereas age, female gender, living alone, disease severity, and disease duration were related to use of a home care nurse. CONCLUSIONS: The number of visits to a neurologist by patients with PD is not associated with disease severity or quality of life impairment, but only with sociodemographic characteristics. Nonmedical care is predicted by disease severity and psychosocial characteristics. The consequences for care and costs are discussed.

Quality of survival after cardiopulmonary resuscitation.

BACKGROUND: Outcome of cardiopulmonary resuscitation (CPR) can be poor, in terms of life expectancy and quality of life. OBJECTIVES: To determine the impact of patient characteristics before, during, and after CPR on these outcomes, and to compare results of the quality-of-life assessment with published studies. METHODS: In a cohort study, we assessed by formal instruments the quality of life, cognitive functioning, depression, and level of dependence of survivors after inhospital CPR. Follow-up was at least 3 months after discharge from the hospital (tertiary care center). RESULTS: Of 827 resuscitated patients, 12% (n = 101) survived to follow-up. Of the survivors, 89% participated in the study. Most survivors were independent in daily life (75%), 17% were cognitively impaired, and 16% had depressive symptoms. Multivariate regression analysis showed that quality of life and cognitive function were determined by 2 factors known before CPR-the reason for admission and age. Factors during and after resuscitation, such as prolonged cardiac arrest and coma, did not significantly determine the quality of life or cognitive functioning of survivors. The quality of life of our CPR survivors was worse compared with a reference group of elderly individuals, but better than that of a reference group of patients with stroke. The quality of life did not importantly differ between the compared studies of CPR survivors. CONCLUSIONS: Cardiopulmonary resuscitation is frequently unsuccessful, but if survival is achieved, a relatively good quality of life can be expected. Quality of life after CPR is mostly determined by factors known before CPR. These findings may be helpful in informing patients about the outcomes of CPR.

Predictors of health care utilization in patients with inflammatory bowel disease: a longitudinal study.

OBJECTIVES: To predict health care utilization in patients with inflammatory bowel disease (IBD). METHODS: The health care utilization of 222 consecutive IBD patients was studied twice over the course of one year. Utilization consisted of medical care, including visits to the gastroenterologist and the general practitioner, and non-medical care, including use of a psychotherapist, a dietitian or home care nurse in the last six months. Prior and concurrent socio-demographic, disease-related and psychosocial factors were measured and their association with patient health care utilization was determined. RESULTS: Poor quality of life, disease burden experienced and depression were significantly (P < 0.01) associated with more visits to both gastroenterologist and GP. Disease activity was found to be significantly correlated to gastroenterologist visits, while female gender was associated with GP visits. Other socio-demographic and disease-related factors were not related to medical care utilization. Results of regression analysis indicated that prior disease burden experienced, social functioning and female sex are the best predictors of physician visits a year later. Of the concurrent factors, the best predictors were disease activity, emotional and social functioning, and disease burden experienced. Psychotherapy and home care were significantly correlated (P < 0.01) with co-morbidity, disease activity, quality of life and depression. Non-medical care utilization was not related to the majority of sociodemographic factors. CONCLUSION: Psychosocial factors, such as poor quality of life and disease burden experienced, are important predictors of health care utilization in IBD patients. Addressing these problems should not only increase the patient's quality of life, but also minimize health care utilization.

Predictors of health care utilization in the chronically ill: a review of the literature.

The objective of this paper is to identify predictors of health care utilization in the chronically ill. This paper reviews 53 studies on hospitalizations and physician visits, published between 1966 and 1997 and identified by MEDLINE and ClinPSYCH databases. Studies with both univariate and multivariate analyses were included. On the basis of the Andersen-Newman model of health care utilization, the effects of predisposing, enabling and need variables are examined. Most studies reviewed indicate that predisposing factors such as age, sex, and marital status are not predictors of hospital utilization in the chronically ill. The enabling factors income, insurance and social support have not been shown to affect health care utilization, but characteristics of the hospitals could have an effect. Need factors such as disease severity, symptom severity and complications adversely affected health care utilization in the chronically ill, while disease duration and comorbidity do not have such an effect. Quality of life and perceived health might affect hospital utilization and physician use. Finally, depression and psychological distress proved to be among the strongest predictors of hospitalizations and physician visits. In conclusion, both disease severity and psychological well-being are most important in health care utilization. Intervention programs to support depressed or psychologically distressed patients should be considered. These could both help the patient and reduce health care utilization costs.

The European Organization for Research and Treatment of Cancer breast cancer-specific quality-of-life questionnaire module: first results from a three-country field study.

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.

Inflammatory Bowel Disease Questionnaire: cross-cultural adaptation and further validation.

OBJECTIVES: The Inflammatory Bowel Disease Questionnaire (IBDQ) is a disease-specific quality of life instrument. We translated and adapted the questionnaire and tested its reliability and (cross-cultural) validity. METHODS: We surveyed 271 patients with inflammatory bowel disease. The inflammatory Bowel Disease Questionnaire and its dimensional scores (bowel, systemic, social and emotional) were correlated with disease activity, health care use, medication and three other indices of quality of life. RESULTS: The reliability coefficient of the Inflammatory Bowel Disease Questionnaire was high (0.93). Patients with higher disease activity had significantly lower quality of life on all Inflammatory Bowel Disease Questionnaire dimensions (P < 0.001). Inflammatory Bowel Disease Questionnaire scores were significantly correlated with health care use (P < 0.01) but not with medication. Almost all Inflammatory Bowel Disease Questionnaire dimensions correlated highly (0.43-0.79, P < 0.001) with the corresponding scales of the standard quality of life indices, except for the bowel dimension. Modified Dutch Inflammatory Bowel Disease Questionnaire scores were consistent with Canadian Inflammatory Bowel Disease Questionnaire norms. CONCLUSIONS: These results support the Inflammatory Bowel Disease Questionnaire as a reliable and valid measure of the quality of life of inflammatory bowel disease patients in multicultural research settings.