Validation of the CaReQoL asthma: a patient reported outcome measure for monitoring the perceived effects of pulmonary rehabilitation in adult patients with severe refractory asthma.

BACKGROUND: The CaReQoL Asthma assesses the care-related quality of life outcomes of pulmonary rehabilitation retrospectively in patients with severe asthma. The questionnaire comprises five domains (physical functioning; social functioning; coping with asthma; knowledge about asthma; medication). AIM: To investigate construct and criterion validity of the CaReQoL Asthma, as well as its responsiveness and minimal important change (MIC), in comparison with other health measures (AQLQ, ACQ and FEV1). METHODS: Eighty three adults with severe refractory asthma filled out the CaReQoL Asthma at 6 and 12 months after a 12-week personalized multidisciplinary pulmonary rehabilitation program in a tertiary asthma centre, either in Switzerland or The Netherlands. Construct validity and responsiveness were assessed by testing pre-defined hypotheses about associations with changes in AQLQ, ACQ and FEV1 scores. Criterion validity and MIC was assessed using Global Perceived Effect (GPE). Factor analyses, Cronbach's alpha, Spearman's correlations, paired t-tests and Student-Newman-Keuls tests were performed. RESULTS: Cronbach's alphas of the questionnaire domains ranged from 0.82 to 0.95. Good construct validity and responsiveness were found; 84% of the assessed correlations confirm pre-defined hypotheses and reflect both weak and moderate to strong correlations. Good criterion validity was also identified, with CaReQol scores discriminating better than other health measures between levels of GPE at 6 months post-rehabilitation. The MIC for the total score was estimated at 0.84. CONCLUSION: These study results suggest that the CaReQoL Asthma is a valid and responsive instrument and shows to be a comprehensive and tailored questionnaire for evaluating and monitoring outcomes of pulmonary rehabilitation in patients with severe refractory asthma. In order to further substantiate the reliability and validity of the CaReQoL Asthma, as well as to monitor outcomes of pulmonary rehabilitation in patients with severe asthma, it is recommended to use the CaReQoL Asthma in addition to other disease specific instruments.

Information Needs of People With Limited Health Literacy Regarding a New "Opt-Out" Organ Donation System: A Qualitative Study in the Netherlands.

Background: In the Netherlands, new legislation on organ donation was implemented, based on a "opt-out" consent system, which means that all adults are presumed to consent for organ donation, unless they actively register their decision not to donate. A public information campaign preceded the law change. In the Netherlands, 29% of the population has limited health literacy (LHL). The aim of the study was to gain insight in the information needs of Dutch citizens with LHL regarding organ donation and the new legislation, as well as in their preferred information channels. Methods: A qualitative study was performed; 30 people participated in four focus groups and six individual interviews. Transcripts were coded, interviews were thematically analysed. Results: People with LHL need specific information to make an informed decision on organ donation. Relevant topics: 1) choice options, 2) eligibility, 3) role of partner and/or family, 4) impact on quality of care, and 5) process of organ donation. Information should be easy to understand. Conclusion: Current standard materials are too difficult and abstract. People with LHL require personal support to tailor general information to their personal situation, and practical help to actually register their choice. Suggestions on how to improve information is provided.

Past, present, and future: a qualitative and literature study identifying historical trends, drivers, and transformational factors for the future demand of blood supply in the Netherlands.

BACKGROUND: As blood transfusion has evolved, there is a need to understand its historical trends and underlying drivers. Furthermore, for blood bank management to make decisions about the future, they need to consider what transformational factors (defined as developments in science, society, and technology) could significantly impact blood demand and to what effect. This study has a two-fold aim: to explore transfusion experts' perspectives regarding 1) historical trends and drivers of red blood cells (RBCs) in the past 20 years and 2) transformational factors that would impact the future demand of RBCs and to what effect. STUDY DESIGN AND METHODS: Forty-two semi-structured interviews were held with transfusion experts from the Netherlands and abroad, supplemented with a literature review of Pubmed, Google Scholar, and gray literature. RESULTS: With regard to historical trends and drivers, experts shared two main trends: decreased or increased demands for RBCs. Various drivers were reported for each trend, coupled with evidence from literature. With regard to the future, experts anticipated that RBC demands will either increase (17%), decrease (45%), decrease but stabilize (12%), or stabilize as is (7%). Various transformational factors were found to support each trend (e.g., gene therapy will reduce RBC demand), although there were factors for which experts were unsure about its effects (e.g., cultured RBCs). Seven groups of transformation factors were identified in the literature review. CONCLUSION: While the future of blood transfusion is uncertain, there are actions that blood banks may take now to prepare for potential future developments.