Abstract：
OBJECTIVE:We aimed to generate evidence on patients' values and preferences to inform the development of the German national Evidence-based Anal Cancer Guideline. STUDY DESIGN AND SETTING:We developed a list of health outcomes based on a systematic search. We then asked anal cancer patients and experts of the guideline development group in an online survey to (a) rate the relative importance of the outcomes in different clinical situations using a nine-point, three-category scale, and (b) select seven outcomes they considered most important for decision-making in each situation. RESULTS:Participants rated almost half of the outcomes (45%) as critical for decision-making, and more than half (53%) as important. Only two outcomes (2%) were rated as low in importance. Agreement between expert and patient ratings was low to fair, and we found important discrepancies in how the relative importance of the outcomes was perceived. However, the rankings of outcomes were highly correlated. CONCLUSION:Determining the relative importance placed by anal cancer patients on outcomes provided useful information for developing guideline recommendations. Our approach may be useful for guideline developers who aim to include the patient perspective. Moreover, our findings may help health professionals caring for anal cancer patients in joint decision-making.
journal_name
J Clin Epidemioljournal_title
Journal of clinical epidemiologyauthors
Werner RN,Gaskins M,Dressler C,Nast A,Schaefer C,Aigner F,Siegel Rdoi
10.1016/j.jclinepi.2020.09.026subject
Has Abstractpub_date
2021-01-01 00:00:00pages
40-50eissn
0895-4356issn
1878-5921pii
S0895-4356(20)31112-4journal_volume
129pub_type
杂志文章abstract：OBJECTIVES:To review James Jackson's analysis of bloodletting among pneumonitis patients at the newly founded Massachusetts General Hospital, in which he implemented the numerical method advocated by Pierre-Charles-Alexandre Louis. STUDY DESIGN AND SETTING:The study sample included 34 cases of clinically diagnosed pne...
journal_title：Journal of clinical epidemiology
pub_type： 传,历史文章,杂志文章
doi：10.1016/j.jclinepi.2014.10.013
更新日期：2015-04-01 00:00:00
abstract：:A 110-item food frequency questionnaire was tested among 152 community controls of the Kuopio Breast Cancer Study. They completed the questionnaire twice and kept two 7-day diet records at 3-month intervals. The intraclass correlations for nutrients varied from 0.49 (thiamine with supplements) to 0.81 (lactose), and f...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/0895-4356(95)00551-x
更新日期：1996-04-01 00:00:00
abstract：BACKGROUND:The probability of a disease, given the result of two diagnostic tests, can be calculated by multiplying the odds of disease after the first test by the likelihood ratio of the second test. OBJECTIVE:To illustrate the error that occurs when calculating disease probability by combining the results of tests t...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/j.jclinepi.2009.04.010
更新日期：2009-12-01 00:00:00
abstract：:Articles alleging hazards of electric or magnetic fields, based on epidemiologic studies, have appeared in the popular press. Some of these articles, which contain distortions of the scientific evidence, have been cited in the scientific and medical literature, thereby being given some degree of apparent legitimacy. I...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/0895-4356(92)90154-f
更新日期：1992-10-01 00:00:00
abstract：OBJECTIVES:Constructs capturing health or functioning can have reflective and/or formative measurement models. Although a construct's measurement model has extensive implications on the construction, validation, and use of a measurement instrument, measurement models are frequently wrongly or not explicitly specified. ...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/j.jclinepi.2018.07.007
更新日期：2018-11-01 00:00:00
abstract：:Claims-based indices of comorbidity and severity, as well as other measures derived from routinely collected administrative data, are developed and tested. The extent to which risk adjustments using claims can be improved by adding information from one well-known measure based on chart review and patient examination (...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/0895-4356(89)90118-2
更新日期：1989-01-01 00:00:00
abstract：OBJECTIVE:To develop a culturally adapted Bengali version of the Short Form-36 (SF-36) Health Survey and to test its acceptability, reliability, and validity in patients with rheumatoid arthritis (RA). STUDY DESIGN AND SETTING:The US English SF-36 was translated into Bengali after established cross-cultural adaptation...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/j.jclinepi.2012.05.004
更新日期：2012-11-01 00:00:00
abstract：BACKGROUND AND OBJECTIVE:To assess the influence of medical conditions on road traffic accidents among a cohort of middle-aged workers and pensioners. STUDY DESIGN AND SETTING:A longitudinal study of 13,548 participants from a cohort study of French workers. Follow-up data covered the 1989-2000 period. Adjusted hazard...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/j.jclinepi.2004.09.008
更新日期：2005-05-01 00:00:00
abstract：:This study reports the use of psychotropic drugs and pregnancy outcome in a prospective survey carried out in northern Finland in 1985-1986, consisting of 7933 pregnant women and their 8030 births. Of the mothers, 120 (1.5%) used psychotropic drugs during pregnancy and of them 26 (0.3% of the total) used these drugs b...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/s0895-4356(96)00203-x
更新日期：1996-11-01 00:00:00
abstract：:A three-state Markov process is used to model a steady-state population. The classical P = ID equation is derived, as well as a number of identities originally reported by Miettinen (Am J Epidemiol 1976; 103: 226-235) and Freeman and Hutchison (Am J Epidemiol 1980; 112: 707-723. Ibid. 1986; 124: 134-149). Using theore...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/0895-4356(88)90009-1
更新日期：1988-01-01 00:00:00
abstract：:To judge the effect on blood pressure, sodium intake of students at two boarding high schools was reduced by 15-20% through changes in food purchasing and in preparation practices in the schools' kitchens. Students were not asked to change their usual eating habits. Each school served alternately as the control or int...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/0895-4356(89)90056-5
更新日期：1989-01-01 00:00:00
abstract：OBJECTIVE:To describe the pain decrease considered as clinically relevant when designing a trial and reporting its results. METHODS:A systematic review of the literature in MEDLINE was conducted to select randomized controlled trials (RCTs) with pain as a primary outcome. Data extracted included the definition (terms ...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章,评审
doi：10.1016/j.jclinepi.2010.06.008
更新日期：2011-05-01 00:00:00
abstract：OBJECTIVES:Recent studies suggest that rating clinical marker states (CMS) does not improve the measurement properties of the standard gamble (SG) and only slightly improves those of the feeling thermometer (FT). The poor intrarater (test-retest) reliability of CMS may explain their meager performance. Further, lack of...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章,多中心研究
doi：10.1016/j.jclinepi.2007.03.010
更新日期：2007-12-01 00:00:00
abstract：:The purpose of this study was to describe patterns of health care use by inner-city patients with asthma and to identify patients at risk for hospitalization. We performed a retrospective cohort study of 1788 patients with asthma aged 5 to 34 years from a large hospital-based multi-specialty practice in inner-city Ind...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/s0895-4356(96)00333-2
更新日期：1997-02-01 00:00:00
abstract：:From a database of 93,077 in-patient admissions, patients assigned to catastrophic, very severe, moderately severe, and average 30-day mortality risk categories (as defined in Medicare Hospital Mortality Information, 1989 release, from the Health Care Financing Administration (HCFA] were selected for study. These admi...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/0895-4356(91)90100-n
更新日期：1991-01-01 00:00:00
abstract：:The clinical correlates of advanced retinopathy were determined in a sample of 427 type II diabetic outpatients, aged 35 to 74 years, recruited in eight centers from all parts of France. The presence of retinopathy was assessed by fluorescein angiography with centralized interpretation. Advanced retinopathy (prolifera...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章,多中心研究
doi：10.1016/0895-4356(95)00582-x
更新日期：1996-06-01 00:00:00
abstract：OBJECTIVE:This study estimated the inter- and intraobserver reliability of a set of noninstrumented physical examination measures for knee pain in older adults. STUDY DESIGN AND SETTING:Forty-five patients from primary care, and 13 patients from secondary care, were each examined by two out of a team of three physical...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/j.jclinepi.2005.11.004
更新日期：2006-05-01 00:00:00
abstract：OBJECTIVE:Genetic studies of complex human diseases rely heavily on the epidemiologic association paradigm, particularly the population-based case-control designs. This study aims to compare the matching effectiveness in terms of bias reduction between exposure matching and stratum matching. STUDY DESIGN AND SETTING:F...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/j.jclinepi.2008.02.016
更新日期：2009-01-01 00:00:00
abstract：OBJECTIVES:It is difficult to compare the reliability of triage systems with the kappa statistic. In this article, a method for comparing triage systems was developed and applied to previously conducted triage reliability studies. STUDY DESIGN AND SETTING:From simulations with theoretical distributions, the minimum, n...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章,评审
doi：10.1016/j.jclinepi.2010.01.012
更新日期：2010-11-01 00:00:00
abstract：BACKGROUND AND OBJECTIVE:In 1981, toxic oil syndrome (TOS) appeared in Spain, affecting more than 20,000 persons and causing over 2500 deaths to date. Previous studies have addressed mortality only by gender and age. We analyzed possible prognostic factors in the survival of the cohort. METHODS:The study period was 1 ...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/s0895-4356(03)00119-7
更新日期：2003-07-01 00:00:00
abstract：OBJECTIVES:To assess whether short message service (SMS) text messages sent as prenotification or postnotification reminders improve questionnaire response rates in randomized controlled trial (RCT) follow-up. STUDY DESIGN AND SETTING:Three "trials within a trial" assessed text message notifications sent before or aft...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/j.jclinepi.2016.05.011
更新日期：2016-11-01 00:00:00
abstract：OBJECTIVE:The Kaplan-Meier method may overestimate absolute mortality risk (AMR) in the presence of competing risks. Urgent heart transplantation (UHT) and ventricular assist device implantation (VADi) are important competing events in heart failure. We sought to quantify the extent of bias of the Kaplan-Meier method i...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/j.jclinepi.2018.07.006
更新日期：2018-11-01 00:00:00
abstract：:Pragmatic trials aim to inform clinical decision making by measuring the effect of a treatment in clinical practice. The purpose of the PRECIS-2 tool is to support in designing a truly pragmatic trial. We comment on a study by Forbes et al., who assessed the applicability of the PRECIS-2 tool. The tool will prove part...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/j.jclinepi.2017.06.006
更新日期：2017-10-01 00:00:00
abstract：BACKGROUND AND OBJECTIVE:Hui and Walter developed a latent class approach to assess the accuracy of a diagnostic procedure when no reference test is available. Our objective was to compare sensitivity and specificity estimates obtained with this reference-free approach and standard approaches, and to examine how and wh...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/j.jclinepi.2004.10.021
更新日期：2005-07-01 00:00:00
abstract：BACKGROUND AND OBJECTIVES:Clinical trials increasingly use results of diagnostic tests as surrogate outcomes. Our objective was to answer the following questions: (1) is the parameter measured by the reference standard a valid surrogate? (2) How does the tests accuracy influence the estimate of the treatment benefit on...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章,评审
doi：10.1016/j.jclinepi.2005.02.024
更新日期：2005-10-01 00:00:00
abstract：:Indexes developed to measure physical functioning as an essential component of general health status are often based on sets of hierarchically-structured items intended to represent a broad underlying concept. Rasch Item Response Theory (IRT) provides a methodology to examine the hierarchical structure, unidimensional...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/0895-4356(94)90215-1
更新日期：1994-06-01 00:00:00
abstract：BACKGROUND AND OBJECTIVE:Two methods for measuring insulin sensitivity, fasting plasma insulin (FPI) and homeostasis model assessment (HOMA) have been proposed for use in large epidemiological research and clinical practice. This project describes the range of observed values of the HOMA and FPI in a large sample of th...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/j.jclinepi.2004.05.001
更新日期：2004-11-01 00:00:00
abstract：OBJECTIVE:To assess the extent to which meta-analysis publications of drugs and biologics focus on specific named agents or even only a single agent, and identify characteristics associated with such focus. STUDY DESIGN AND SETTING:We evaluated 499 articles with meta-analyses published in 2010 and estimated how many d...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章,评审
doi：10.1016/j.jclinepi.2012.10.014
更新日期：2013-04-01 00:00:00
abstract：:The Busselton Survey is a population survey that is held about every three years. In 1994-1995 a re-survey was held of all past participants and 8,502 attended. Financial constraints precluded employing staff for data collection for blood pressure and anthropometry, these therefore were collected by unpaid lay volunte...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/s0895-4356(01)00492-9
更新日期：2002-04-01 00:00:00
abstract：:The purpose of this study was to relate the 1-year risk of death and development of acute myocardial infarction among diabetics with acute chest pain to whether they had a history of hypertension or not. All patients with a history of diabetes mellitus who, during 21 months, were admitted to the Emergency Room in Sahl...
journal_title：Journal of clinical epidemiology
pub_type： 杂志文章
doi：10.1016/0895-4356(94)90174-0
更新日期：1994-07-01 00:00:00
