Diagnosing primary ciliary dyskinesia: an international patient perspective

Primary ciliary dyskinesia (PCD) is a rare genetic disorder characterised by progressive sinopulmonary disease, with symptoms starting soon after birth. A European Respiratory Society (ERS) Task Force aims to address disparities in diagnostics across Europe by providing evidence-based clinical practice guidelines. We aimed to identify challenges faced by patients when referred for PCD diagnostic testing. A patient survey was developed by patient representatives and healthcare specialists to capture experience. Online versions of the survey were translated into nine languages and completed in 25 countries. Of the respondents (n=365), 74% were PCD-positive, 5% PCD-negative and 21% PCD-uncertain/inconclusive. We then interviewed 20 parents/patients. Transcripts were analysed thematically. 35% of respondents visited their doctor more than 40 times with PCD-related symptoms prior to diagnostic referral. Furthermore, the most prominent theme among interviewees was a lack of PCD awareness among medical practitioners and failure to take past history into account, leading to delayed diagnosis. Patients also highlighted the need for improved reporting of results and a solution to the “inconclusive” diagnostic status. These findings will be used to advise the ERS Task Force guidelines for diagnosing PCD, and should help stakeholders responsible for improving existing services and expanding provision for diagnosis of this rare disease.

The impact of user charges on patient choice of healthcare services in Ireland

This research assesses the impact of user charges in the context of consumer choice to ascertain how user charges in healthcare impact on patient behaviour in Ireland. Quantitative data is collected from a subset of the population in walk-in Urgent Care Clinics and General Practitioner surgeries to assess their responses to user charges and whether user charges are a viable source of part-funding healthcare in Ireland. Examining the economic theories of Becker (1965) and Grossman (1972), the research has assessed the impact of user charges on patient choice in terms of affordability and accessibility in healthcare. The research examined a number of private, public and part-publicly funded healthcare services in Ireland for which varying levels of user charges exist depending on patients’ healthcare cover. Firstly, the study identifies the factors affecting patient choice of privately funded walk-in Urgent Care Clinics in Ireland given user charges. Secondly, the study assesses patient response to user charges for a mainly public or part-publicly provided service; prescription drugs. Finally, the study examines patients’ attitudes towards the potential application of user charges for both public and private healthcare services when patient choice is part of a time-money trade-off, convenience choice or preference choice. These services are valued in the context of user charges becoming more prevalent in healthcare systems over time. The results indicate that the impact of user charges on healthcare services vary according to socio-economic status. The study shows that user charges can disproportionately affect lower income groups and consequently lead to affordability and accessibility issues. However, when valuing the potential application of user charges for three healthcare services (MRI scans, blood tests and a branded over a generic prescription drug), this research indicates that lower income individuals are willing to pay for healthcare services, albeit at a lower user charge than higher income earners. Consequently, this study suggests that user charges may be a feasible source of part-financing Irish healthcare, once the user charge is determined from the patients’ perspective, taking into account their ability to pay.

Reviewing mHealth in developing countries: A stakeholder perspective

Infrastructural deficiencies, limited access to medicare, and shortage of health care workers are just a few of the barriers to health care in developing countries. As a consequence, the burden of disease and its impact on the livelihoods and the economic productivity of people are staggering. mHealth has been extolled as one possible solution to overcoming these challenges, yet discussion of mHealth systems is often limited to specific tasks and user groups. To address this, we adopt a stakeholder perspective and analyze existing research on the mHealth process in developing countries. Specifically, we focus on three key stakeholder groups, i.e. healthcare workers, patients, and system developers. We perform an in-depth analysis of 60 peer-reviewed studies to determine the extent to which different mHealth stakeholder interactions are researched, and to identify high-level themes emerging within these interactions. This analysis illustrates two key gaps in existing mHealth research. First, while interactions involving healthcare workers and/or patients have received significant attention, relatively little research has looked at the role of patient-to-patient interactions. Second, the interactions between system developers and the other stakeholder groups are strikingly under-represented. We conclude by calling for more mHealth research that explicitly addresses these stakeholder interactions.