An evaluation of Sea Search as a citizen science programme in Marine Protected Areas

Citizen science involves collaboration between multi-sector agencies and the public to address a natural resource management issue. The Sea Search citizen science programme involves community groups in monitoring and collecting subtidal rocky reef and intertidal rocky shore data in Victorian Marine Protected Areas (MPAs), Australia. In this study we compared volunteer and scientifically collected data and the volunteer motivation for participation in the Sea Search programme. Intertidal rocky shore volunteer-collected data was found to be typically comparable to data collected by scientists for species richness and diversity measures. For subtidal monitoring there was also no significant difference for species richness recorded by scientists and volunteers. However, low statistical power suggest only large changes could be detected due to reduced data replication. Generally volunteers recorded lower species diversity for biological groups compared to scientists, albeit not significant. Species abundance measures for algae species were significantly different between volunteers and scientists. These results suggest difficulty in identification and abundance measurements by volunteers and the need for additional training requirements necessary for surveying algae assemblages. The subtidal monitoring results also highlight the difficulties of collecting data in exposed rocky reef habitats with weather conditions and volunteer diver availability constraining sampling effort. The prime motivation for volunteer participation in Sea Search was to assist with scientific research followed closely by wanting to work close to nature. This study revealed two important themes for volunteer engagement in Sea Search: 1) volunteer training and participation and, 2) usability of volunteer collected data for MPA managers. Volunteer-collected data through the Sea Search citizen science programme has the potential to provide useable data to assist in informed management practices of Victoria&rsquo;s MPAs, but requires the support and commitment from all partners involved.<br /

Respiratory and Bronchitic Symptoms Predict Intention to Quit Smoking among Current Smokers with, and at Risk for, Chronic Obstructive Pulmonary Disease

Rationale: Smoking cessation is the most important intervention for patients with chronic obstructive pulmonary disease (COPD). What leads smokers with COPD to quit smoking remains unknown

Comparative effectiveness research in chronic obstructive pulmonary disease

Chronic obstructive pulmonary disease affects millions worldwide. It is America’s third leading cause of death, and results in significant morbidity and cost. Although many therapies exist and are being developed to alleviate symptoms and decrease morbidity and mortality in chronic obstructive pulmonary disease, most have only been studied in placebo-controlled efficacy studies in highly selected populations. Comparative effectiveness and translational research in chronic obstructive pulmonary disease will require the development of infrastructures to support collaboration between researchers and the stakeholders who generate, disseminate and use new knowledge. Methodologies need to evolve to both prioritize research questions and to conduct collaborative comparative effectiveness research studies. Given the impracticality of testing every clinical intervention in comparative pragmatic trials for comparative effectiveness research in chronic obstructive pulmonary disease, we advocate expanding methodology that includes the use of observational databases with serially performed effectiveness analyses and quasi-experimental designs that include following healthcare changes longitudinally over time to assess benefit, harm, subgroups and cost

Stakeholder Priorities for Comparative Effectiveness Research in Chronic Obstructive Pulmonary Disease: A Workshop Report

Comparative effectiveness research (CER) is intended to address the expressed needs of patients, clinicians, and other stakeholders. Representatives of 54 stakeholder groups with an interest in chronic obstructive pulmonary disease (COPD) participated in workshops convened by the COPD Outcomes-based Network for Clinical Effectiveness and Research Translation (CONCERT) over a 2-year period. Year 1 focused on chronic care and care coordination. Year 2 focused on acute care and transitions in care between healthcare settings. Discussions and provisional voting were conducted via teleconferences and e-mail exchanges before the workshop. Final prioritization votes occurred after in-person discussions at the workshop. We used a modified Delphi approach to facilitate discussions and consensus building. To more easily quantify preferences and to evaluate the internal consistency of rankings, the Analytic Hierarchy Process was incorporated in Year 2. Results of preworkshop and final workshop voting often differed, suggesting that prioritization efforts relying solely on requests for topics from stakeholder groups without in-person discussion may provide different research priorities. Research priorities varied across stakeholder groups, but generally focused on studies to evaluate different approaches to healthcare delivery (e.g., spirometry for diagnosis and treatment, integrated healthcare strategies during transitions in care) rather than head-to-head comparisons of medications. This research agenda may help to inform groups intending to respond to CER funding opportunities in COPD. The methodologies used, detailed in the online supplement, may also help to inform prioritization efforts for CER in other health conditions

Whole body composition analysis by the BodPod air-displacement plethysmography method in children with phenylketonuria shows a higher body fat percentage

BACKGROUND: Phenylketonuria (PKU) causes irreversible central nervous system damage unless a phenylalanine (PHE) restricted diet with amino acid supplementation is maintained. To prevent growth retardation, a protein/amino acid intake beyond the recommended dietary protein allowance is mandatory. However, data regarding disease and/or diet related changes in body composition are inconclusive and retarded growth and/or adiposity is still reported. The BodPod whole body air-displacement plethysmography method is a fast, safe and accurate technique to measure body composition. AIM: To gain more insight into the body composition of children with PKU. METHODS: Patients diagnosed with PKU born between 1991 and 2001 were included. Patients were identified by neonatal screening and treated in our centre. Body composition was measured using the BodPod system (Life Measurement Incorporation©). Blood PHE values determined every 1–3 months in the year preceding BodPod analysis were collected. Patients were matched for gender and age with data of healthy control subjects. Independent samples t tests, Mann–Whitney and linear regression were used for statistical analysis. RESULTS: The mean body fat percentage in patients with PKU (n = 20) was significantly higher compared to healthy controls (n = 20) (25.2% vs 18.4%; p = 0.002), especially in girls above 11 years of age (30.1% vs 21.5%; p = 0.027). Body fat percentage increased with rising body weight in patients with PKU only (R = 0.693, p = 0.001), but did not correlate with mean blood PHE level (R = 0.079, p = 0.740). CONCLUSION: Our data show a higher body fat percentage in patients with PKU, especially in girls above 11 years of age

Measuring health-related quality of life in chronic obstructive pulmonary disease: properties of the EQ-5D-5L and PROMIS-43 short form

Abstract Background The Patient Reported Outcomes Measurement Information System 43-item short form (PROMIS-43) and the five-level EQ-5D (EQ-5D-5L) are recently developed measures of health-related quality of life (HRQL) that have potentially broad application in evaluating treatments and capturing burden of respiratory-related diseases. The aims of this study were: (1) to examine their psychometric properties in patients with chronic obstructive pulmonary disease (COPD), and (2) to identify dimensions of HRQL that differ and do not differ by lung function. Methods We conducted a multi-center, cross-sectional study (“COPD Outcomes-based Network for Clinical Effectiveness & Research Translation” [CONCERT]). We analyzed patients who met spirometric criteria for COPD, and completed EQ-5D-5L and PROMIS questionnaires. Disease severity was graded based on the Global Initiative for Chronic Obstructive Lung Disease (GOLD) classification. Pulmonary function test, PROMIS-43, EQ-5D (index score and EQ-Visual Analog Scale [EQ-VAS]), six minute walk test (6MWT), and three dyspnea scales (mMRC, Borg, FACIT-Dyspnea) were administered. Validity and reliability of EQ-5D-5L and PROMIS-43 were examined, and differences in HRQL by GOLD grade were assessed. Results Data from 670 patients with COPD were analyzed (mean age 68.5 years; 58% male). More severe COPD was associated with more problems with mobility, self-care and usual activities (all p-values <0.01) according to EQ-5D-5L. Related domains on EQ-5D-5L, PROMIS and clinical measures were moderately (r = 0.30-0.49) to strongly (r ≥ 0.50) correlated. A statistically significant trend of decreasing HRQL with more severe lung functions was observed for EQ-5D-5L index scores, EQ-VAS scores, and PROMIS physical function and social roles. Conclusions Results supported the validity of EQ-5D-5L and PROMIS-43 in COPD patients, and indicate that physical function and social activities decrease with level of lung function by GOLD grade, but not pain, mental health, sleep or fatigue as reported by patients

Multicenter Study Comparing Case Definitions Used to Identify Patients with Chronic Obstructive Pulmonary Disease

Rationale: Clinical trials in chronic obstructive pulmonary disease (COPD) usually require evidence of airflow obstruction and clinical risk factors. International Classification of Diseases, Ninth Revision (ICD-9) diagnosis codes or patient-reported physician diagnoses are often used for epidemiologic studies and performance improvement programs

A multi-factor model for the assessment of depression associated with obstructive sleep apnea: A fuzzy logic approach

Many patients with obstructive sleep apnea (OSA) also exhibit depressive symptoms such as fatigue, anhedonia, weight changes, and depressed or sad mood. Some of these patients are misdiagnosed with clinical depression and treated with antidepressants, which may actually impede OSA treatment. Thus, the assessment of depression is of crucial importance in sleep clinics, and is often used both before and after treatment. As there are no objective ways to measure depression, the most common form of assessment is using subjective, usually self-reporting, questionnaires. These questionnaires were created for assessing and diagnosing clinical depression and not for multiple assessments of depressive symptoms as a secondary medical condition. They are also subject to reporting inaccuracies. In this paper, we introduce STEM-D, a fuzzy logic model for assessing depression in OSA patients that incorporates the multi-factorial nature of depression. We studied nine existing questionnaires and created four categories of questions. We modeled the categories using fuzzy variables, with the output variable being the severity of a patient's depression. STEM-D will be used multiple times throughout treatment to monitor a patient's change in depressive symptoms as a result of OSA treatment. This model will be applied in a clinical setting as part of a larger project, CPAP-T*MONITOR