Anne Illemann Christensen

What is wrong with non-respondents? Alcohol-, drug- and smoking-related mortality and morbidity in a 12-year follow-up study of respondents and non-respondents in the Danish Health and Morbidity Survey.

Abstract Aim Response rates in health surveys have diminished over the last two decades, making it difficult to obtain reliable information on health and health‐related risk factors in different population groups. This study compared cause‐specific mortality and morbidity among survey respondents and different types of non‐respondents to estimate alcohol‐, drug‐ and smoking‐related mortality and morbidity among non‐respondents. Design Prospective follow‐up study of respondents and non‐respondents in two cross‐sectional health surveys. Setting Denmark. Participants A total sample of 39 540 Danish citizens aged 16 years or older. Measurements Register‐based information on cause‐specific mortality and morbidity at the individual level was obtained for respondents (n = 28 072) and different types of non‐respondents (refusals n = 8954; illness/disabled n = 731, uncontactable n = 1593). Cox proportional hazards models were used to examine differences in alcohol‐, drug‐ and smoking‐related mortality and morbidity, respectively, in a 12‐year follow‐up period. Findings Overall, non‐response was associated with a significantly increased hazard ratio (HR) of 1.56 [95% confidence interval (CI) = 1.36–1.78] for alcohol‐related morbidity, 1.88 (95% CI = 1.38–2.57) for alcohol‐related mortality, 1.55 (95% CI = 1.27–1.88) for drug‐related morbidity, 3.04 (95% CI = 1.57–5.89) for drug‐related mortality and 1.15 (95% CI = 1.03–1.29) for smoking‐related morbidity. The hazard ratio for smoking‐related mortality also tended to be higher among non‐respondents compared with respondents, although no significant association was evident (HR = 1.14; 95% CI = 0.95–1.36). Uncontactable and ill/disabled non‐respondents generally had a higher hazard ratio of alcohol‐, drug‐ and smoking‐related mortality and morbidity compared with refusal non‐respondents. Conclusion Health survey non‐respondents in Denmark have an increased hazard ratio of alcohol‐, drug‐ and smoking‐related mortality and morbidity compared with respondents, which may indicate more unfavourable health behaviours among non‐respondents.

Patient-reported outcomes at hospital discharge from Heart Centres, a national cross-sectional survey with a register-based follow-up: the DenHeart study protocol

Introduction Patient reported health status, which includes symptom burden, functional status and quality of life, is an important measure of health. Differences in health status between diagnostic groups within cardiology have only been sparsely investigated. These outcomes may predict morbidity, mortality, labour market affiliation and healthcare utilisation in various diagnostic groups. A national survey aiming to include all cardiac diagnostic groups from a total Heart Centre population has been designed as the DenHeart survey. Methods and analysis DenHeart is designed as a cross-sectional survey with a register-based follow-up. All diagnostic groups at the five national Heart Centres are included during 1 year (15 April 2013 to 15 April 2014) and asked to fill out a questionnaire at hospital discharge. The total eligible population, both responders and non-responders, will be followed in national registers. The following instruments are used: SF-12, Hospital Anxiety and Depression Scale, EQ-5D, Brief Illness Perception Questionnaire (B-IPQ), HeartQoL and Edmonton Symptom Assessment Scale. The following variables are collected from national registers: action diagnosis, procedures, comorbidity, length of hospital stay, type of hospitalisation, visits to general practitioners and other agents in primary healthcare, dispensed prescription medication, vital status and cause of death. Labour market affiliation, sick leave, early retirement pension, educational degree and income will be collected from registers. Frequency distributions and multiple logistic regression analyses will be used to describe and assess differences in patient reported outcomes at hospital discharge between diagnostic groups and in-hospital predicting factors. Cox proportional hazards regression models with age as the time scale will be used to investigate associations between patient reported outcomes at baseline and morbidity/mortality, labour market affiliation and healthcare utilisation after 1 year. Ethics and dissemination The study complies with the Declaration of Helsinki. The study has been approved by the Danish Data Protection Agency: 2007-58-0015/30-0937 and registered at ClinicalTrials.gov (NCT01926145). Study findings will be disseminated widely through peer reviewed publications and conference presentations.

A nationwide population-based cross-sectional survey of health-related quality of life in patients with myeloproliferative neoplasms in Denmark (MPNhealthSurvey): survey design and characteristics of respondents and nonrespondents

Objective The Department of Hematology, Zealand University Hospital, Denmark, and the National Institute of Public Health, University of Southern Denmark, created the first nationwide, population-based, and the most comprehensive cross-sectional health-related quality of life (HRQoL) survey of patients with myeloproliferative neoplasms (MPNs). In Denmark, all MPN patients are treated in public hospitals and treatments received are free of charge for these patients. Therefore, MPN patients receive the best available treatment to the extent of its suitability for them and if they wish to receive the treatment. The aims of this article are to describe the survey design and the characteristics of respondents and nonrespondents. Material and methods Individuals with MPN diagnoses registered in the Danish National Patient Register (NPR) were invited to participate. The registers of the Danish Civil Registration System and Statistics Denmark provided information regarding demographics. The survey contained 120 questions: validated patient-reported outcome (PRO) questionnaires and additional questions addressing lifestyle. Results A total of 4,704 individuals were registered with MPN diagnoses in the NPR of whom 4,236 were eligible for participation and 2,613 (62%) responded. Overall, the respondents covered the broad spectrum of MPN patients, but patients 70–79 years old, living with someone, of a Danish/Western ethnicity, and with a higher level of education exhibited the highest response rate. Conclusion A nationwide, population-based, and comprehensive HRQoL survey of MPN patients in Denmark was undertaken (MPNhealthSurvey). We believe that the respondents broadly represent the MPN population in Denmark. However, the differences between respondents and nonrespondents have to be taken into consideration when examining PROs from the respondents. The results of the investigation of the respondents’ HRQoL in this survey will follow in future articles.

Alcohol Intake and Risk of Ischemic and Haemorrhagic Stroke: Results from a Mendelian Randomisation Study

Background and Purpose To test whether alcohol intake, both observational and estimated by genetic instruments, is associated with risk of ischemic and haemorrhagic stroke. Methods We used data from the Copenhagen City Heart Study 1991 to 1994 and 2001 to 2003, and the Copenhagen General Population Study 2003 to 2012 (n=78,546). As measure of alcohol exposure, self-reported consumption and genetic variation in alcohol metabolizing genes (alcohol dehydrogenase ADH1B and ADH1C) as instrumental variables were used. Stroke diagnoses were obtained from a validated hospital register. Results During follow-up 2,535 cases of ischemic and haemorrhagic stroke occurred. Low and moderate alcohol intake (1 to 20 drinks/week) was associated with reduced risk of stroke. The hazard ratios associated with drinking 1 to 6, 7 to 13, and 14 to 20 drinks/week were 0.84 (95% confidence interval [CI], 0.76 to 0.92), 0.83 (95% CI, 0.73 to 0.94), and 0.84 (95% CI, 0.73 to 0.97), respectively, compared with drinking <1 drink/day. ADH1B and ADH1C genotypes were not associated with risk of stroke. Further analysis to test the included measures revealed that increasing alcohol intake (per 1 drink/day) was positively associated with risk of alcoholic liver cirrhosis, but not associated with risk of stroke, and that increasing blood pressure (per systolic 10 mm Hg) was not associated with risk of alcoholic liver cirrhosis, but positively associated with risk of stroke. Conclusions Low and moderate self-reported alcohol intake was associated with reduced risk of stroke. The result was not supported by the result from the causal genetic analysis.

Associations between fatigue, physical activity, and QoL in patients with myeloproliferative neoplasms

Patients with Philadelphia chromosome‐negative Myeloproliferative Neoplasms (MPNs) report fatigue as the most common symptom and contributing significantly to reduction in their quality of life (QoL). Targeted non‐pharmacological intervention to increase levels of physical activity is suggested as a fatigue‐reducing and QoL‐enhancing intervention in MPN patients. The interrelationship between physical activity, fatigue, and QoL has, to our knowledge, never been reported.

Impaired health, functioning and health-related quality of life in patients with chronic myeloid leukemia: results from a nationwide survey

Background: The aim of this study is to examine the interest for relation between quality of life (QOL) and well being of an implementation of a program of physical activity, with patients of Multiple Sclerosis (MS). Methods: This is a correlation study. The study includes 27 patients with MS, mean age 44 years, 58,3 % women, 37,5% currently married, 67% retired, mean school level of 12,5 years. We use the questionnaire and the Multiple Sclerosis Quality of Life scale (MSQol-54) and sub scale psychological well-being (PWB) of Mental Health Inventory The program consists of an intervention to promote physical activity (IPPA) in a group of eight people, in once a week sessions of 90 minutes, during seven weeks. We analyze the results through the Spearman correlation tests between the dimensions of MSQOL-54 and Well-being. Findings: The Results the correlations between PWB and the domains of MSQOL-54 before application of IPPA and the end of the implementation of IPPA, showed that there were statistically significant correlations between all variables. Discussion: In this study, suggests that IPPA can play an important in the relation between the QOL and PWB of these patients.23rd Annual Conference of the International Society for Quality of Life Research Springer International Publishing Switzerland 2016 Cutting edge research plenary (1) Consensus-based standards and criteria for evaluating the content validity of patient-reported outcome measures: a COSMIN Delphi study Caroline B. Terwee, PhD, VU University Medical Center, Amsterdam, Netherlands; Cecilia A. Prinsen, PhD, VU University Medical Center, Amsterdam, Netherlands; Alessandro Chiarotto, MS (PhD Student), VU University Medical Center, Amsterdam, Netherlands; Marjan J. Westerman, PhD, VU University, Amsterdam, Netherlands; Henrica de Vet, PhD, VU University Medical Center, Amsterdam, Netherlands; Donald Patrick, PhD, University of Washington, Seattle, WA, United States; Jordi Alonso, PhD, IMIM (Hospital del Mar Medical Research Institute), Barcelona; CIBER en Epidemiologı́a y Salud Pública (CIBERESP), Madrid; Pompeu Fabra University (UPF), Barcelona, Spain; Lex M. Bouter, PhD, VU University Medical Center, Amsterdam, Netherlands; Lidwine B. Mokkink, PhD, VU University Medical Center, Amsterdam, Netherlands Aims: Content validity is considered to be the most important measurement property of a Patient-Reported Outcome Measure (PROM). Guidelines to evaluate content validity of PROMs are emerging, but there is a lack of a consensus-based checklist for assessing the quality of content validity studies. The current COSMIN standards only consider whether certain things have been done, but not how they were done, and the quality of the PROM development is not taken into account. Also consensus-based criteria for what constitutes good content validity of PROMs are lacking. The aim of this study was to reach consensus on standards and criteria for evaluating the content validity of PROMs. Standards refer to design requirements of studies and are used to evaluate the quality of studies on PROM development and content validity. Criteria refer to what constitutes good content validity and are used to evaluate the content validity of the PROM itself. Methods: A Delphi consensus study was performed in three email rounds among COSMIN users, authors of systematic reviews of PROMs and (methodological) papers on content validity. Potential standards and criteria were extracted from a systematic literature search. Participants were asked to rate the relevance of each proposed standard and criterion on a 5-point scale. In addition, they were invited to make comments. RESULTS: 158 experts from 21 countries participated. Consensus was reached on 28 standards for evaluating the quality of PROM development studies and 37 standards for evaluating the quality of studies evaluating the content validity of a PROM. Consensus was reached on 9 criteria for evaluating the content validity (i.e. relevance, comprehensiveness, and comprehensibility) of the PROM itself. The standards and criteria were pilot tested in a systematic review evaluating the content validity of PROMs for low back pain patients and slight adaptations were made. A user manual was developed with explanations and examples on how each item should be completed. Conclusions: The new COSMIN standards and criteria can be used in systematic reviews of PROMs to evaluate the content validity of PROMs for a given context and population in a standardized and transparent way. (2) Telling the interpretation story: the case for strong anchors and multiple methods Cheryl D. Coon, PhD, Outcometrix, Tucson, AZ, United States Aims: The patient-reported outcome (PRO) field continues to debate best practices for establishing thresholds for interpreting change on instruments. To gain insight into the value of common methods for determining thresholds, this simulation study intended to generate data with known properties against which the methods could be considered. Methods: Data were generated based on a t-score metric with half of the 1000-simulee sample (i.e., placebo) experiencing no change (centered at 0) and half (i.e., treatment) experiencing a 0.5standard deviation improvement (centered at 5). Five-category anchors were generated from the same distributions, with correlations between the PRO scores and the anchors ranging from 0.3 to 0.8. The ‘‘true’’ threshold for improvement was set at a score of 5. Methods evaluated included classification statistics (i.e., sensitivity, specificity, positive predictive value, negative predictive value), discriminant analysis, and regression. Results: Results for a correlation of 0.3 were difficult to interpret, which is consistent with the literature that proposes the correlation between the anchor and the PRO instrument be stronger than 0.3. The thresholds that might be considered from the 0.3 correlation results were deflated, which risks setting the bar for interpretation too low. A correlation of 0.5 produced more easily interpretable results, with thresholds ranging from approximately 4–9, depending on the method. A correlation of 0.8 produced more distinct inflection points, with thresholds ranging from approximately 4–8. Even with the strongest correlation, the PRO scores produced false positives and false negatives. Conclusions: This simulation study 123 Qual Life Res (2016) 25:1–196 DOI 10.1007/s11136-016-1390-7

Response to Fergusson & Boden (2015): The importance of considering the impacts of survey non-participation.

We thank Fergusson & Boden for their interest in our paper, as detailed in their commentary 1. They point to some interesting issues which, for the main part, have also been debated during the preparation of the paper.

Response to Fergusson & Boden (2015): The importance of considering the impacts of survey non-participation: Commentaries

We thank Fergusson & Boden for their interest in our paper, as detailed in their commentary 1. They point to some interesting issues which, for the main part, have also been debated during the preparation of the paper.

The importance of considering the impacts of survey non-participation

We thank Fergusson & Boden for their interest in our paper, as detailed in their commentary 1. They point to some interesting issues which, for the main part, have also been debated during the preparation of the paper.