Background Autosomal dominant polycystic kidney disease (ADPKD) is considered the most common inherited renal disease. Patient-Reported Outcomes (PROs) and patient experience in ADPKD are difficult to quantify and have not been well studied, particularly in the early stages of the disease. There is evidence to suggest that early-stage ADPKD patients have a lower Health-Related Quality of Life (HRQoL) than the general population due to the signs and symptoms of early-stage ADPKD. However, no research has been carried out on the HRQoL of early-stage ADPKD patients using validated ADPKD-specific PRO measures. Additionally, a new disease progression delaying treatment option has recently emerged for ADPKD. Patient preference for this treatment and unmet treatment needs have not yet been investigated. Methods The ACQUIRE study is a prospective, observational study investigating the influence of early-stage ADPKD-related symptoms and treatments on PROs. It aims to collect real-world data on patient demographics, treatment patterns, clinical outcomes, and PROs such as HRQoL, treatment satisfaction and treatment preference in early-stage ADPKD. Adult ADPKD patients in stages 1–3 of chronic kidney disease (CKD) with evidence of rapidly progressing disease are being recruited from seven European countries. At baseline and every 3 months, for a follow-up period of 18 months, general and disease-specific questionnaires are completed remotely to capture patients’ own assessment of their overall and ADPKD-related HRQoL. A Discrete Choice Experiment (DCE) is also used to investigate the value patients place on different attributes of hypothetical treatment options (e.g. treatment outcomes, side effects) and the role each attribute plays in determining overall patient treatment preference. Discussion The results of this study will highlight the real-world effects of ADPKD-related challenges on PROs including HRQoL, treatment experience and satisfaction; and help physicians gain greater insight into likely disease outcomes based on early-stage patient symptoms and patients’ experience with treatment. Data captured by the DCE may inform ADPKD treatment decision-making from a patient perspective. The DCE will also provide insights into which patients are more likely to perceive benefit from treatments based on the value and trade-offs they place on specific treatment attributes. Trial registration NCT02848521 . Protocol Number/Version : 156–303-00096/Final
The mapping of paediatric vaccination process in the United Kingdom (UK), as a precursor of a real-world study, is described. Methods: A targeted review of publicly available information was conducted to gain comprehensive understanding of the paediatric vaccination process in the UK. A survey was designed eliciting the chronology of vaccination process prior to and on vaccination day, including estimates of active health care professional involvement. Face-to-face interviews with a nurse were conducted at three general practitioner surgeries routinely performing vaccinations. A subsequent follow-up call with each nurse was also arranged. Descriptive statistics were generated and preliminary cost calculations made. Results: Paediatric vaccination process can be broken down in 6 and 8 clearly discernible steps prior to and on vaccination day, respectively. Activities prior to vaccination day include, among others, inventory, ordering, cold-chain management and are typically for multiple subjects. Mean time for those activities, recalculated per single vaccination visit, was 6.7 minutes, of which 61% dedicated to administrative duties. Activities on vaccination day include, among others, room preparation, consultation, vaccine administration. Estimated time per single visit totaled 25.4 minutes. Estimated total cost per single vaccine administration, with nurse salary cost from PSSRU, was £10.4. Costs may vary substantially depending on the level of "on-costs" to nurse's gross salary. ConClusions: The detailed mapping of paediatric vaccination process in the UK identified clearly discernible tasks, time estimates, factors impacting variability of time outcomes, and early cost estimates. This forms the basis of a real-world T&M study aiming to generate robust time and cost outcomes.objeCtives: Guidelines for Health Technology Assessment (HTA) and Comparative Effectiveness Research (CER) largely focus on pharmaceuticals and only few explicitly consider other health care technologies. CER of medical devices (MD) faces some challenges that raise questions about how adequate current CER methods account for the specific features of MD and how well MD fit in the paradigm of drug HTA. Our aim was to identify challenges and gaps in methodology related to specific issues of MD. Our comprehensive framework for the evaluation of clinical effectiveness of MD includes recommendations for generation of primary data and analyzing and synthesizing data in systematic reviews of CER of MD. Methods: We performed a targeted literature review for CER methods and specific features of MD. An electronic database search was combined with systematic screening of tables of content of selected journals in the fields of epidemiology, HTA, statistics, and evidence-based medicine, which have a strong focus on methods. Additionally, we screened the reference lists of the most relevant papers. Results: More than 200 publications about the general evaluation of MD and about specific CER methods were included. The MD's physical mechanism of action, t...
Time to perform 7 clearly pre-specified tasks was recorded by trained observers using a stopwatch. Time of day measurements for subject time in GP surgery and vaccination room as well as consumables usage was collected. Time for tasks before vaccination day was obtained from opinion. A total 123 processes were observed (approximately 20 by site, equally distributed across visits 1 to 4). Analyses were run by site and pooled across sites using a random intercept model. Published 2014 PSSRU data were used to transfer HCP time into cost. Results: Mean HCP time for a vaccination process (including a mean 2.75 vaccine doses) was 9.5min (95% CI: 7.7-11.3); site range: 7.0-11.3min. Associated cost (90% practice nurse, 10% support staff) was £6.2; range: £4.7-£7.7. Mean time for a single oral and intramuscular vaccine administration was 1.0 and 0.4min, respectively. Mean time for a single vaccine reconstitution was 0.8min. Mean time in GP surgery was 23.9min (95% CI: 19.2-28.5), of which 8.4min in vaccination room (95% CI: 5.5-11.2). When including average supplies cost (£0.27), as well as an estimated 10.1 minutes per vaccination process prior to vaccination day (£5.5), total estimated cost per visit was £12.0. ConClusions: Paediatric vaccination requires substantial resources, including staff, facility, and parental time. Potential changes in the vaccination schedule would have an impact on associated time and cost and the vaccination unit's capacity to managing subjects. ReseaRch podium pResentations -session ii cost-effectiveness studies ce1Basal insulin Regimens: systematic Review, netwoRk meta-analysis, and cost -utility analysis foR the national institute foR health and caRe excellence (nice) clinical guideline on type 1 diaBetes mellitus in adults
A105 found to have adequate knowledge and practice. Significant associations were noted for knowledge-practice groups with parent's age, education level, and family income (p< 0.05). ConClusions: Understanding parents' knowledge and practice is an important factor in order to improve immunization uptake and timeliness. Educational interventions targeting parents with inadequate knowledge and practice about childhood immunization are needed.
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