Measures of Sleep Duration and Quality in Sri Lanka

A link between poor sleep and abnormal health outcomes has been established.The majority of this research is conducted in Western, high-income country (HIC) settings which warrants the question of how relevant the findings and the derived consensus statements are to low-middle income countries (LMICs). Sleep duration and quality are known to be affected by cultural, social, environmental and geographical influences which vary significantly between LMIC and their HIC counterparts. This thesis provides a thorough examination of objective and subjective measurements of sleep in a LMIC setting. Objective and subjective measures of sleep were obtained as part of an actigraphic sub-study nested within the Colombo twin and singleton study, a cohort study of twins and singletons randomly selected from Colombo, Sri Lanka. Results comparing actigraphic and self-reported sleep duration indicated that Sri Lankans have short sleep duration; averaging 6.4h (SD 1.5) self-reported and 6.0h (SD 0.9) actigraphically. Poor sleep quality was prevalent with an average WASO of 49 min, and sleep efficiency <85%. Bias was observed, with self-report consistently over-reporting sleep on average by 27.6 min (95% CI: -0.68, -0.24) compared to objective measures, but wide individual variation in disagreement, ranging from overreporting by 3.34h to under-reporting by 2.42h. Agreement between subjective and objective measurements of sleep quality was also assessed. Objective indices of sleep efficiency, sleep onset latency and wake after sleep onset did not agree with each other and were unable to be combined into more useful composite indices as a ‘global’ measure of an individual’s satisfaction with their sleep. Given the high cardiometabolic morbidity in Sri Lanka and poor measurement agreement observed, this warrants further investigation and supports the need for culturally appropriate, reliable, and valid assessment for analytic epidemiology in non-Western settings

The Lived Experience of Narcolepsy in Australia: An Exploration of the Needs, Concerns, and Barriers to Care

This thesis explored the needs, concerns, and barriers to care experienced by persons and their families/carers living with narcolepsy in Australia. It also aimed to explore how person-centric the healthcare system is in practice, using narcolepsy as the example, and determine what persons with narcolepsy and their families/carers perceive ‘well-managed’ narcolepsy to be. This thesis contains four studies: A qualitative study involving a document analysis, a systematic review involving the quantitative analysis of psychometric properties of outcome measures, and two qualitative studies involving 1:1 semi-structured interviews.   Several key findings resulted from this thesis: • There is substantial dissatisfaction with the healthcare system likely due to misalignment in care priorities between persons with narcolepsy, healthcare professionals, and the healthcare system • Effective treatment is inaccessible for most persons living with narcolepsy • Consumers have limited avenues to voice healthcare concerns or meaningfully contribute to healthcare policy development • There is a lack of easily accessible information about narcolepsy, including its impact and the accommodations and services, in a format accessible to the public, workplaces, and schools • There is a lack of quality, validated outcome measures used in narcolepsy • Persons with narcolepsy experience substantial anticipated and self- stigma likely contributes to the high prevalence of depression and anxiety The findings of this thesis imply the healthcare system does not appear to be person-centric when navigated by persons with narcolepsy. Little progress has been made towards addressing the needs and concerns of persons with narcolepsy, with some of the concerns identified in this thesis previously reported as early as 2001. Overall, it suggests a need for the proactive inclusion of persons with narcolepsy and their families and carers in healthcare policy and practice at all levels

Effect of interventions for the well-being, satisfaction and flourishing of general practitioners- a systematic review

OBJECTIVES: Clinician well-being has been recognised as an important pillar of healthcare. However, research mainly addresses mitigating the negative aspects of stress or burnout, rather than enabling positive aspects. With the added strain of a pandemic, identifying how best to maintain and support the well-being, satisfaction and flourishing of general practitioners (GPs) is now more important than ever. DESIGN: Systematic review. DATA SOURCES: We searched MEDLINE, PsycINFO, Embase, CINAHL and Scopus from 2000 to 2020. STUDY SELECTION: Intervention studies with more than 50% GPs in the sample evaluating self-reported well-being, satisfaction and related positive outcomes were included. The Cochrane Risk of Bias 2 tool was applied. RESULTS: We retrieved 14_792 records, 94 studies underwent full-text review. We included 19 studies in total. Six randomised controlled trials, three non-randomised, controlled trials, eight non-controlled studies of individual or organisational interventions with a total of 1141 participants. There were two quasi-experimental articles evaluating health system policy change. Quantitative and qualitative positive outcomes were extracted and analysed. Individual mindfulness interventions were the most common (k=9) with medium to large within-group (0.37-1.05) and between-group (0.5-1.5) effect sizes for mindfulness outcomes, and small-to-medium effect sizes for other positive outcomes including resilience, compassion and empathy. Studies assessing other intervention foci or other positive outcomes (including well-being, satisfaction) were of limited size and quality. CONCLUSIONS: There is remarkably little evidence on how to improve GPs well-being beyond using mindfulness interventions, particularly for interventions addressing organisational or system factors. This was further undermined by inconsistent reporting, and overall high risk of bias. We need to conduct research in this space with the same rigour with which we approach clinical intervention studies in patients. PROSPERO REGISTRATION NUMBER: CRD42020164699. FUNDING SOURCE: Dr Diana Naehrig is funded through the Raymond Seidler PhD scholarship

How patient centric is health policy development? The case of the Parliamentary Inquiry into Sleep Health Awareness in Australia

Objective: Parliamentary inquiries into health-related issues empower everyday Australians to contribute to the development and reform of health policy. We explored how patient and family/carers concerns are translated by this process, using a less well-known disease, narcolepsy, as an example. Methods: Written submissions made to the Parliamentary Inquiry into Sleep Health Awareness in Australia 2018 by self-identified patients or family/carers with narcolepsy (n = 13) were extracted and thematically analysed using the Framework Approach. Each submission was systematically coded and abstracted into emergent themes before being evaluated against the final policy recommendations. Results: Although patients and their family/carers prioritised issues that affected their daily lives (i.e. mental health sequela, workplace accommodations), the policy recommendations in the report focused mainly on issues of healthcare infrastructure, funding and engagement. Our analysis highlighted several barriers that patients and their family/carers face when contributing to this part of healthcare policy formation. Conclusions: Our findings suggest that the parliamentary inquiry process in its current form is not an ideal vehicle by which patients and family/carers can contribute or influence healthcare policy. Despite calling for submissions from patients and their family/carers, the final report and subsequent health policy recommendations made by the inquiry do not appear to be patient-centric or reflective of the submissions written by these stakeholders. Increased transparency, development of processes to balance stakeholder priorities and improved accessibility for stakeholders to participate are needed if health-related parliamentary inquiries are to produce healthcare policy that ultimately meets the needs of patients and family/carers