Patient-reported dyspnea in COPD reliability and association with stage of disease.
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ABSTRACT:
SUBMITTER: Mahler DA
PROVIDER: S-EPMC3026583 | biostudies-other | 2009 Dec
REPOSITORIES: biostudies-other
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Project description:ImportancePatient-reported outcome (PRO) measures address the need for patient-centered data and are now used in diverse clinical, research, and policy pursuits. They are important in conditions causing upper airway-related dyspnea in which the patient's reported experience and physiological data can be discrepant.ObjectivesTo perform a systematic review of the literature on upper airway dyspnea-related PRO measures and to rigorously evaluate each measure's developmental properties, validation, and applicability.Evidence reviewThis study strictly adhered to Preferred Reporting Items for Systematic Review and Meta-analysis (PRISMA) guidelines. MEDLINE via the PubMed interface, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), and the Health and Psychosocial Instruments (HaPI) database were searched using relevant vocabulary terms and key terms related to PRO measures and upper airway-related dyspnea. Three investigators performed abstract review, and 2 investigators independently performed full-text review by applying an established checklist to evaluate the conceptual model, content validity, reliability, construct validity, scoring and interpretability, and respondent burden and presentation of each identified instrument. The initial literature search was conducted in November 2014 and was updated in April 2016.FindingsOf 1269 studies reviewed, 3 upper airway-related dyspnea PRO measures met criteria for inclusion. One PRO measure was designed de novo to assess upper airway-related dyspnea symptoms and monitor treatment outcomes, while 2 were adapted from established instruments designed for lower airway disease. Measurement properties and psychometric characteristics differed, and none met all checklist criteria. Two met a criterion in each of 7 domains evaluated. Two demonstrated test-retest and internal consistency reliability, and 2 showed that their scores were responsive to change. Thematic deficiencies in current upper airway-related dyspnea PRO measures are lack of patient involvement in item development (content validity), plan for interpretation, and literacy level assessments.Conclusions and relevancePRO measures are critical in the assessment of patients with upper airway-related dyspnea. Three instruments with disparate developmental rigor have been designed or adapted to assess this construct. Care must be taken to understand the measurement characteristics and contextual relevance before applying these PRO measures for clinical, research, or quality initiatives.
| S-EPMC5604091 | biostudies-literature
Project description:PurposePharmacotherapy is one cornerstone of Chronic Obstructive Pulmonary Disease (COPD) management. Published U.S. data seldom includes patient-reported COPD medication use and adherence. We add this patient perspective to the commonly reported administrative prescribing and fill data.MethodsThis survey study used inhaler and nebulizer pictures and lists of oral COPD medications to query members of the COPD Foundation Patient-Powered Research Network, a national self-reported online registry. Medications used, adherence, inhaler education, cost concerns, previous exacerbations, and COPD Assessment Test scores were assessed and summarized using simple descriptive statistics and hazard ratios controlling for age, gender, and disease burden.ResultsRespondents mean age was 68 years, 60% were women, >69% with the COPD Assessment Test (CAT) scores >15, and >50% reported 2 or more exacerbations in the past 12 months. Overall, >98% used one or more inhaled COPD medications, 7.6% rescue inhaler only, 17.8% used long-acting bronchodilator only therapy (11.1% dual), and 72.8% using corticosteroid therapies, including 53% triple therapy. Nebulizers were used by 59.4% and 34.8% use oral COPD medications. Reported adherence rates were high (80.1%), but 41% reported trouble paying for medications, with 20.1% reported missing medications due to cost.ConclusionsIn this population, COPD had a high burden with >50% of respondents using triple therapy, and one in eight maintenance oral corticosteroids. Self-reported adherence was high, but with significant cost concerns reported resulting in missed medications.
| S-EPMC8686845 | biostudies-literature
Project description:BackgroundOver the years, the scope of outcomes assessment in chronic obstructive pulmonary disease (COPD) has broadened, allowing for the evaluation of various patient-reported outcomes (PROs). As it still remains unclear whether and to what extent PROs mirror the exercise performance of patients with COPD, the current study aimed to assess the association between different exercise test outcomes and PROs, before and after pulmonary rehabilitation (PR).MethodsCorrelations between PROs used to describe health-related quality of life (HRQoL), mood status, level of care dependency and dyspnea in patients with COPD and commonly used laboratory- and field-based exercise test outcomes were evaluated in 518 individuals with COPD attending PR.ResultsOverall, correlations between PROs and exercise test outcomes at baseline were statistically significant. The correlation between modified Medical Research Council (mMRC) dyspnea score and 6-min walking distance (6MWD) was strongest (ρ:-0.65; p<0.001). HRQoL related PROs showed weak correlations with exercise outcomes at baseline. Moderate correlations were found between St George's Respiratory Questionnaire total score and 6MWD (r:-0.53; p<0.001) and maximal workload achieved during cardiopulmonary exercise testing (ρ:-0.48; p<0.001); and between Clinical COPD Questionnaire (CCQ) total score and 6MWD (r:-0.48; p<0.001) and maximal workload (ρ:-0.43; p<0.001). When significant, correlations between changes in exercise test outcomes and changes in PROs after PR were generally very weak or weak. The highest correlation was found between changes in CCQ total score and changes in 6MWD (ρ: - 0.36; p<0.001).ConclusionsPROs and exercise test outcomes, although significantly correlated with each other, assess different disease features in patients with COPD. Individual PROs need to be supported by additional functional measurements whenever possible, in order to get a more detailed insight in the effectiveness of a PR program.Trial registrationNetherlands Trial Register ( NL3263 /NTR3416). Registered 2 May 2012.
| S-EPMC7487841 | biostudies-literature
Project description:BackgroundMost measures of dyspnea assess a single aspect (intensity or distress) of the symptom. We developed the Multidimensional Dyspnea Profile (MDP) to measure qualities and intensities of the sensory dimension and components of the affective dimension. The MDP is not indexed to a particular activity and can be applied at rest, during exertion, or during clinical care. We report on the development and testing of the MDP in patients with a variety of acute and chronic cardiopulmonary conditions.MethodsOne hundred fifty-one adults admitted to the ED with breathing symptoms completed the MDP three times in the ED, twice at least 1 h apart (T1, T2), and near discharge from the ED (T3). Measures were repeated in 68 patients twice in a follow-up session 4 to 6 weeks later (T4-T5). The ED sample was 56% men with a mean age of 53 ± 15 years; the follow-up sample was similar.ResultsFactor analysis resulted in a two-factor solution with a total explained variance of 63%, 74%, and 72% at T1, T2, and T3, respectively. One domain related to primary sensory qualities and immediate unpleasantness, and the second encompassed emotional response. For the two domains, Cronbach α ranged from 0.82 to 0.95, and the intraclass correlation coefficient ranged from 0.91 to 0.98. Repeated-measures analysis was significant for change (T1, T3, T4), showing responsiveness to change in MDP domains with treatment (F([2,66]) = 19.67, P > .001).ConclusionsThese analyses support the reliability, validity, and responsiveness to clinical change of the MDP with two domains in an acute care and follow-up setting.
| S-EPMC3367480 | biostudies-literature
Project description:AimTo provide a Portuguese version of the Multidimensional Dyspnea Profile (MDP), investigating its validity and reliability in Brazilian patients with COPD.MethodsThis was a cross-sectional study for translation and linguist validation of the Portuguese MDP version for patients with COPD. The process occurred according to the protocol of Mapi Research Trust, Lyon, France. Three scores of MDP were used for the analysis: the immediate unpleasantness of dyspnea (A1); the "immediate perception domain" (S) (sum of A1 plus the sensory descriptors) and the "emotional response domain" (A2) (sum of the emotional descriptors). The questionnaires COPD assessment Test (CAT), Hospital Anxiety and Depression scale (HADS) and Medical Research Council scale (MRC) were used as anchors to investigate MDP's validity. Internal consistency was assessed with Cronbach's alpha. Test-retest reliability was assessed with intraclass correlation coefficient (ICC) and concurrent validity was assessed with Spearman correlation coefficients.ResultsThirty patients with moderate-severe COPD were studied for MDP's validation analysis (43% male, 63±8years, body mass index [BMI] 27±6Kg/m2, forced expiratory volume in the first second [FEV1] 48±15%predicted, six-minute walking test [6MWT] 464±84m and 84±16%predicted), whereas 10 patients were excluded from the test-retest reliability analysis due to missing data, resulting in a sample of 20 subjects for this purpose (50% male, 62±8years, BMI 27±6Kg/m2, FEV1 48±15%predicted, 6MWT 452±93m and 82±19%predicted). Both samples were similar regarding general characteristics (P>0,05 for all variables). MDP presented strong correlations, i.e., ICC intra-rater: A1: 0.77 (0.48-0.90), S: 0.78 (0.52-0.91), and A2: 0.85 (0.66-0.94), with high internal consistency (Cronbach's α 0.86, 0.88 and 0.92 respectively); and ICC inter-rater: A1: 0.74 (0.46-0.89), S: 0.75 (0.48-0.89) and A2: 0.91 (0.78-0.96) with Cronbach's α 0.85, 0.86 and 0.95 respectively.ConclusionThe Portuguese version of the MDP is the first valid and reliable instrument to assess dyspnea multidimensionally in Portuguese-speaking patients with COPD.
| S-EPMC6490879 | biostudies-literature
Project description:BackgroundPatient reported outcomes are increasingly used to assess the success of surgical procedures. Patient reported complications are often included as an outcome. However, these data must be validated to be accurate and useful in clinical practice.MethodsThis was a retrospective descriptive study of 364 patients who had completed their six-month follow-up review questionnaire in the Arthroplasty Clinical Outcomes Registry, National (ACORN), an Australian orthopaedic registry. Patient-reported complications following total hip arthroplasty (THA) and total knee arthroplasty (TKA) were compared to surgeon-reported complications recorded in their electronic medical records at their various follow-up appointments. Sensitivity, specificity, positive predictive value and negative predictive value were calculated. Agreement was assessed using percentage agreement and Cohen's kappa.ResultsPatient-reported data from the ACORN registry returned overall low sensitivity (0.14), negative predictive value (0.13) and kappa values (0.11), but very high specificity (0.98), positive predictive value (0.98) and agreement values (96.3%) for reporting of complications when compared to surgeon-reported data. Values varied depending on the type and category of complication.ConclusionPatients are accurate in reporting the absence of complications, but not the presence. Sensitivity of patient-reported complications needs to be improved. Greater attention to the clarity of the questions asked may help in this respect.
| S-EPMC6330452 | biostudies-literature
Project description:BackgroundMost antithrombotic medication users are older adults. Patient-reported outcome measures are commonly used in clinical research on antithrombotic medication, such as the diagnosis of intracranial hemorrhage.ObjectivesTo determine the reliability of patient-reported intracranial hemorrhage, anticoagulant and platelet aggregation inhibitor use in the older adult population.Patients/methodsWe conducted a secondary analysis of a prospective, observational cohort study of older adults who presented to the emergency department with a fall. The primary outcome was diagnosis of intracranial bleeding. We compared patient-reported intracranial bleeding to structured chart review with adjudication. We also compared patient-reported use of antiplatelet and anticoagulant medication to physician-reported medication use supplemented with structured chart review. We calculated the diagnostic accuracy of the patient-reported outcomes using our comparators as the reference standard.ResultsExact agreement for patient-reported intracranial bleeds was 95%, with a Cohen's kappa of 0.30 (95% confidence interval [CI], 0.15-0.45). The sensitivity was 36.7% (95% CI, 20.6%-56.1%) and specificity 97.2% (95% CI, 95.8%-98.1%). For anticoagulant medication use, exact agreement was 87%, Cohen's kappa 0.66 (95% CI, 0.63-0.72), sensitivity 84.0% (95% CI, 79.3%-83.8%), and specificity 87.6% (95% CI, 85.1%-89.7%). For antiplatelet medication use, exact agreement was 77%, Cohen's kappa 0.50 (95% CI, 0.44-0.55), sensitivity 68.7% (95% CI, 64.0%-73.1%), and specificity 81.2% (95% CI, 78.0-83.8%).ConclusionsPatient-reported outcome and exposure data were unreliable in this study. Our findings have a bearing on future research study design.
| S-EPMC8117814 | biostudies-literature
Project description:Incorporation of the patient perspective into research and clinical practice will enrich our understanding of the status and management of patients with glomerular disease and may result in therapies that better address patient needs. In recent years, the importance of the patient experience of glomerular disease has become clear, and significant efforts have been undertaken to systematically capture and describe the patient's disease experience. Patient-reported outcome instruments provide a means to assess the patient's experience in a quantitative manner, thus enabling for comparisons within and between patients. Patient-reported outcome assessments are solely on the basis of a patient report about the status of their health without amendment or interpretation by a clinician or others. Patient-reported outcome assessments provide an opportunity to incorporate the patient perspective into clinical care, research, and clinical trials. Our paper provides an overview of terminology and development methods for patient-reported outcomes and reviews (1) currently available patient-reported outcome instruments appropriate for use in glomerular disease, (2) existing patient-reported outcome data in glomerular disease, and (3) opportunities for incorporating patient-reported outcome instruments into clinical care and research.
| S-EPMC5220669 | biostudies-other
Project description:BackgroundWaitlist mortality due to donor shortage for lung transplantation is a serious problem worldwide. Currently, the selection of recipients in Japan is mainly based on the registration order. Hence, scientific evidence for risk stratification regarding waitlist mortality is urgently needed. We hypothesized that patient-reported dyspnea and health would predict mortality in patients waitlisted for lung transplantation.MethodsWe analyzed factors related to waitlist mortality using data of 203 patients who were registered as candidates for lung transplantation from deceased donors. Dyspnea was evaluated using the modified Medical Research Council (mMRC) dyspnea scale, and the health status was determined with St. George's Respiratory Questionnaire (SGRQ).ResultsAmong 197 patients who met the inclusion criteria, the main underlying disease was interstitial lung disease (99 patients). During the median follow-up period of 572 days, 72 patients died and 96 received lung transplantation (69 from deceased donors). Univariable competing risk analyses revealed that both mMRC dyspnea and SGRQ Total score were significantly associated with waitlist mortality (p = 0.003 and p < 0.001, respectively) as well as age, interstitial lung disease, arterial partial pressure of carbon dioxide, and forced vital capacity. Multivariable competing risk analyses revealed that the mMRC and SGRQ score were associated with waitlist mortality in addition to age and interstitial lung disease.ConclusionsBoth mMRC dyspnea and SGRQ score were significantly associated with waitlist mortality, in addition to other clinical variables such as patients' background, underlying disease, and pulmonary function. Patient-reported dyspnea and health may be measured through multi-dimensional analysis (including subjective perceptions) and for risk stratification regarding waitlist mortality.
| S-EPMC8061007 | biostudies-literature
Project description:Several fixed-dose combinations (FDCs) of long-acting bronchodilators (a long-acting muscarinic antagonist [LAMA] plus a long-acting ?2-agonist [LABA]) are available for the treatment of COPD. Studies of these FDCs have demonstrated substantial improvements in lung function (forced expiratory volume in 1 second) in comparison with their respective constituent monocomponents. Improvements in patient-reported outcomes (PROs), such as symptoms and health status, as well as exacerbation rates, have been reported compared with a LABA or LAMA alone, but results are less consistent. The inconsistencies may in part be owing to differences in study design, methods used to assess study end points, and patient populations. Nevertheless, these observations tend to support an association between improvements in forced expiratory volume in 1 second and improvements in symptom-based outcomes. In order to assess the effects of FDCs on PROs and evaluate relationships between PROs and changes in lung function, we performed a systematic literature search of publications reporting randomized controlled trials of FDCs. Results of this literature search were independently assessed by two reviewers, with a third reviewer resolving any conflicting results. In total, 22 Phase III randomized controlled trials of FDC bronchodilators in COPD were identified, with an additional study including a post-literature search (ten for indacaterol-glycopyrronium once daily, eight for umeclidinium-vilanterol once daily, three for tiotropium-olodaterol once daily, and two for aclidinium-formoterol twice daily). Results from these studies demonstrated that the LAMA-LABA FDCs significantly improved lung function compared with their component monotherapies or other single-agent treatments. Furthermore, LABA-LAMA combinations also generally improved symptoms and health status versus monotherapies, although some discrepancies between lung function and PROs were observed. Overall, the safety profiles of the FDCs were similar to placebo. Further research is required to examine more closely any relationship between lung function and PROs in patients receiving LABA-LAMA combinations.
| S-EPMC5221557 | biostudies-literature