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Purpose: An Internet-based tool for reporting and analysing patient-reported outcomes (PROs) has been developed. The tool enables merging PROs with blood test results and allows for computation of treatment responses. Data may be visualized by graphical analysis and may be exported for downstream statistical processing. The aim of this study was to investigate, whether patients with myeloproliferative neoplasms (MPNs) were willing and able to use the tool and fill out questionnaires regularly.Methods: Participants were recruited from the outpatient clinic at the Department of Haematology, Roskilde University Hospital, Denmark. Validated questionnaires that were used were European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30, Myeloproliferative Neoplasm Symptom Assessment Form, Brief Fatigue Inventory and Short Form 36 Health Survey. Questionnaires were filled out ≥ 6 months online or on paper according to participant preference. Regularity of questionnaire submission was investigated, and participant acceptance was evaluated by focus-group interviews.Results: Of 135 invited patients, 118 (87 %) accepted participation. One hundred and seven participants (91 %) preferred to use the Internet-based tool. Of the 118 enrolled participants, 104 (88 %) submitted PROs regularly ≥ 6 months. The focus-group interviews revealed that the Internet-based tool was well accepted.Conclusion: The Internet-based approach and regular collection of PROs are well accepted with a high participation rate, persistency and adherence in a population of MPN patients. The plasticity of the platform allows for adaptation to patients with other medical conditions. [ABSTRACT FROM AUTHOR]

Type D personality is an emerging risk factor in cardiovascular disease. We examined the psychometric properties of the Danish version of the Type D Scale (DS14) and the impact of Type D on anxiety and depression in cardiac patients. Cardiac patients ( n = 707) completed the DS14, the Hospital Anxiety and Depression Scale, and the Eysenck Personality Questionnaire. A subgroup ( n = 318) also completed the DS14 at 3 or 12 weeks. The two-factor structure of the DS14 was confirmed; the subscales negative affectivity and social inhibition were shown to be valid, internally consistent (Cronbach’s α = 0.87/0.91; mean inter-item correlations = 0.49/0.59), and stable over 3 and 12 weeks ( r = 0.85/0.78; 0.83/0.79; ps < 0.01). Type D was an independent associate of anxiety ( β, 0.49; p < 0.01) and depression ( β, 0.47; p < 0.01) in univariable linear regression analysis and remained a significant independent associate of anxiety ( β, 0.26; p < 0.01) and depression ( β, 0.17; p < 0.01) in adjusted analyses. The Danish DS14 was shown to be a valid and reliable measure associated with increased symptoms of anxiety and depression independent of socio-demographic and clinical risk factors. The DS14 may be used in research and clinical practice to identify high-risk patients. [ABSTRACT FROM AUTHOR]

Purpose: To (i) describe changes in health-related quality of life (HRQoL) pre-operatively, at discharge, and 4 weeks after discharge following open heart surgery, (ii) compare the performance of the EuroQol Questionnaire (EQ-5D 5L) and the Kansas City Cardiomyopathy Questionnaire (KCCQ) against an anchor-based approach, and to (iii) investigate the association between HRQoL and 180-day readmission.Methods: A prospective, consecutive cohort (single-center study) of 291 patients completed the EQ-5D 5L and KCCQ pre-operatively, at discharge and 4 weeks post-discharge. Changes in HRQoL over time were evaluated, and the performance of the instruments was investigated. The association between HRQoL and readmission were investigated with Cox Proportional Hazard models.Results: Scores of the EQ-5D Index and VAS decreased significantly from the pre-operative assessment to discharge and improved from discharge to 4 weeks after. The KCCQ scores significantly improved from baseline to 4 weeks after. Minimal clinically important improvements from before surgery to 4 weeks after were seen among 24% (EQ-5D Index), 45% (EQ-5D VAS), and 57% (KCCQ). More than one-third experienced worse HRQoL 1 month after discharge. Area under the curve (AUC) (performance of the instruments) demonstrated the following: EQ-5D Index AUC 0.622 (95% CI 0.540-0.704), VAS AUC 0.674 (95% CI 0.598-0.750), and KCCQ AUC 0.722 (95% CI 0.65-0.792). None of the HRQoL measurements were associated with 180-day readmission.Conclusions: This study revealed that HRQoL measured with the EQ-5D is significantly worse at discharge compared to before surgery, but scores increases within the first month measured with the EQ-5D and the KCCQ. The EQ-5D and KCCQ have a moderate correlation with an anchor-based approach but were not associated with readmission. [ABSTRACT FROM AUTHOR]

Objective: Evidence on municipality-based cancer rehabilitation is sparse. This longitudinal study explores the following: (1) Rehabilitation needs, (2) effectiveness of municipality-based rehabilitation, and (3) whether rehabilitative services are stratified according to individual needs in breast cancer patients.Methods: We collected data from a longitudinal survey among 82 breast cancer patients referred to municipality-based rehabilitation at the Copenhagen Centre for Cancer and Health. Rehabilitation needs, health-related quality of life (HRQoL), and functional status were collected using patient-reported outcomes (PROs) including distress thermometer, problem list, Functional Assessment of Cancer Therapy-Breast questionnaire (FACT-B), and upper body function with the abbreviated disability of the arm, shoulder, and hand (Quick-DASH) questionnaire. Data collection time points are as follows: entry, follow-up, and end of intervention.Results: At referral, scores were (mean (range)) distress 4.0 (0-10), problems 9.5 (0-24), and FACT-B 103.0 (49.8-135.5). HRQoL increased during rehabilitation (FACT-B ∆ mean 8.1 points (> MID, p < 0.0001)); 56% had a positive change, 34% no difference, and 11% a decline. Those with the lowest FACT-B entry score had significantly longer duration of rehabilitation (10.9 vs 8.7 months, p < 0.001), higher number of services (7.0 vs 5.3, p < 0.003), and participated more in group-based exercise (+3 sessions: 57% vs 8%, p < 0.001).Conclusion: This is the first study to report on pragmatic municipality-based cancer rehabilitation. The results suggest that services are aimed at patients with rehabilitation needs, improve HRQoL, and are properly stratified to those who need it the most. We suggest future monitoring of municipality-based rehabilitation services to ensure quality of care. [ABSTRACT FROM AUTHOR]

Purpose: Patient-reported health-related quality of life is a complementary healthcare outcome and important when assessing treatment efficacy. Using COSMIN methodological recommendations, this study evaluates the validity and reliability of a core heart disease-specific health-related quality of life questionnaire, the HeartQoL questionnaire (Danish version) in a sample of patients following heart valve surgery.Design: This project involved a cross-sectional validity study and a test-retest reliability study.Methods: Eligible patients completed the HeartQoL, the SF-36 health survey questionnaire, and the Hospital Anxiety and Depression Scale following heart valve surgery. Construct validity was tested using a priori hypotheses. Internal consistency reliability was assessed with Cronbach's alpha. An independent sample of patients participated in the test-retest study and reproducibility was determined with relative [intra-class correlation coefficient (ICC)] and absolute reliability [standard error of measurement (SEM) and smallest detectable change (SDC)].Results: Internal consistency was high with Cronbach's alpha ≥ 0.87. ICC was 0.86-0.92. SEM ranged from 0.17 to 0.26 points and SDC ranged from 0.5 to 0.7 points. Construct validity was confirmed with 87% of all a priori hypotheses for predicted variables.Conclusions: The HeartQoL questionnaire demonstrates acceptable construct validity, internal consistency, and test-retest reproducibility in patients following heart valve surgery. Future studies should focus on assessing the responsiveness of the HeartQoL questionnaire over time and following heart valve surgery. [ABSTRACT FROM AUTHOR]

The aim of this study is to validate the Danish, Norwegian and Swedish versions of the self-administered MacNew Heart Disease Health-related Quality of Life questionnaire in patients with ischemic heart disease. The MacNew questionnaire, the Short Form SF-36, and the Hospital Anxiety and Depression Scale were completed at baseline by 976 patients (Denmark n = 353, Norway n = 328, Sweden n = 295) with a diagnosis of angina (n = 335), myocardial infarction (n = 352), or heart failure (n = 289). Each language version of the MacNew satisfied reliability criteria with Cronbach's α values for the total group data (0.90-0.94) as well as the diagnostic group data (0.91-0.96). The test-retest correlations exceeded the criteria for group comparison (r ≥ 0.70) in Danish and Norwegian patients. The multidimensionality of the MacNew was confirmed although the original three-factor solution did not fully meet the criteria for good fit. Convergent and discriminative validity were confirmed in each language and diagnosis group with the exception of discriminative validity in Swedish angina patients. The psychometric properties of the Danish, Norwegian, and Swedish versions of the MacNew are largely confirmed. The MacNew can be recommended as a specific instrument for assessing and evaluating HRQL in Danish, Norwegian, and Swedish patients with angina, MI, and heart failure. However, the MacNew factor structure needs to be revisited in future studies. [ABSTRACT FROM AUTHOR]