Survey of healthcare experiences of Australian adults living with rare diseases.

QR Code

Survey of healthcare experiences of Australian adults living with rare diseases.

Background: Few studies have examined whether the healthcare needs of people living with rare diseases are being met. This study explores the experiences of Australian adults living with rare diseases in relation to diagnosis, information provision at the time of diagnosis, use of health and support...

Full description

Bibliographic Details
Main Authors:	Molster, C., Urwin, D., Di Pietro, L., Fookes, M., Petrie, D., van der Laan, S., Dawkins, Hugh
Format:	Journal Article
Published:	BioMed Central Ltd. 2016
Online Access:	http://hdl.handle.net/20.500.11937/24992

Similar Items

The risk of re-identification versus the need to identify individuals in rare disease research.
by: Hansson, M., et al.
Published: (2016)

Indigenous genetics and rare diseases: Harmony, diversity and equity
by: Baynam, Gareth, et al.
Published: (2017)

Dispelling myths about rare disease registry system development
by: Bellgard, M., et al.
Published: (2013)

A modular approach to disease registry design: Successful adoption of an internet-based rare disease registry
by: Bellgard, M., et al.
Published: (2012)

The Australian primary healthcare experiment: a national survey of Medicare Locals
by: Robinson, Suzanne, et al.
Published: (2015)

An Australian approach to the policy translation of deliberated citizen perspectives on biobanking
by: Molster, C., et al.
Published: (2012)

3D facial analysis for rare disease diagnosis and treatment monitoring: Proof-Of-Concept plan for hereditary angioedema.
by: Jamuar, Saumya, et al.
Published: (2023)

The collective impact of rare diseases in Western Australia: an estimate using a population-based cohort.
by: Walker, C., et al.
Published: (2016)

The International Rare Diseases Research Consortium: Policies and Guidelines to maximize impact
by: Lochmüller, H., et al.
Published: (2017)

Future of Rare Diseases Research 2017–2027: An IRDiRC Perspective
by: Austin, C., et al.
Published: (2018)

The rare and undiagnosed diseases diagnostic service - application of massively parallel sequencing in a state-wide clinical service.
by: Baynam, G., et al.
Published: (2016)

Adult wilm’s tumor : rare entity, aggressive behavior
by: Abd Rahman, Adlina, et al.
Published: (2007)

Duodenal duplication cyst in an adult: a rare case.
by: Raghunath P,, et al.
Published: (2014)

Public awareness and misunderstanding about DrinkWise Australia: a cross-sectional survey of Australian adults.
by: Brennan, E., et al.
Published: (2017)

SMART work design: Accelerating the diagnosis of rare diseases in the Western Australian Undiagnosed Diseases Program
by: Hay, Georgia, et al.
Published: (2020)

Healthcare expenditure on Indigenous and non-Indigenous Australians at high risk of cardiovascular disease
by: Angell, B., et al.
Published: (2017)

Big Healthcare Data: Survey of Challenges and Privacy
by: Mohammed, Jubeir, et al.
Published: (2020)

Bursts of Self-Conscious Emotions in the Daily Lives of Emerging Adults
by: Conroy, D., et al.
Published: (2015)

Correction to Dispelling myths about rare disease registry system development [Source Code Biol Med, 8, (2013), 21] 10.1186/1751-0473-8-21, 24131574
by: Bellgard, M., et al.
Published: (2014)

An Introduction to Mineral Finance Chapter 8 Australian Mineral Economics
by: Guj, Pietro
Published: (2013)

TRANSLATION AND VALIDATION OF THE HEALTHCARE TEAMWORK SURVEY QUESTIONNAIRE:STUDY DESIGN FOR THE MALAYSIAN CONTEXT
by: W.S., Wan Siti Auni, et al.
Published: (2017)

Use of mechanical airway clearance devices in the home by people with neuromuscular disorders: effects on health service use and lifestyle benefits
by: Mahede, T., et al.
Published: (2015)

Economic burden of healthcare utilisation by older persons living in the community in Malaysia
by: Haron, Sharifah Azizah, et al.
Published: (2024)

Ageing Intensifies the Care Needs of Adults Living with Parkinson ’s Disease and their Carers
by: Giles, M., et al.
Published: (2015)

A survey of Western Australian AIP members
by: Parlevliet, D., et al.
Published: (2013)

Barriers to diagnosis of a rare neurological disorder in China - Lived experiences of Rett Syndrome families
by: Lim, F., et al.
Published: (2012)

Revisiting the ability of Australian primary healthcare services to respond to health inequity
by: Freeman, T., et al.
Published: (2016)

Young adults and disability: transition to independent living?
by: Hendey, Nicola
Published: (1999)

Project evaluation: Dealing with uncertainty and risk, Chapter 10 Australian Mineral Economics
by: Guj, Pietro
Published: (2013)

NCDMod: A microsimulation model projecting chronic disease and risk factors for australian adults
by: Lymer, S., et al.
Published: (2016)

Knowledge, Attitudes, and Perceptions of COVID-19 Among Healthcare and Non-Healthcare Workers in Sub-Saharan Africa: A Web-Based Survey
by: Ekpenyong, B.N., et al.
Published: (2021)

Blueprint for a deliberative public forum on biobanking policy: Were theoretical principles achievable in practice?
by: Molster, C., et al.
Published: (2013)

Informing public health policy through deliberative public engagement: Perceived impact on participants and citizen-government relations
by: Molster, C., et al.
Published: (2013)

Improved diagnosis and care for rare diseases through implementation of precision public health framework
by: Baynam, Gareth, et al.
Published: (2017)

Behavioural response of Australian humpback whales to seismic surveys
by: Cato, D., et al.
Published: (2011)

Enhancing the teaching quality of part-time faculty in a Jamaican adult education institution: (with a focus on continuing professional development)
by: Dawkins, Yvonne
Published: (2011)

A review of live survey application: Surveymonkey and surveygizmo
by: Abd Halim, Maisaarah, et al.
Published: (2018)

A survey of clinicians regarding respiratory physiotherapy intervention for intubated and mechanically ventilated patients with community-acquired pneumonia. What is current practice in Australian ICUs?
by: van der Lee, L., et al.
Published: (2017)

The adverse consequences of drinking in a sample of Australian adults
by: Dietze, P., et al.
Published: (2010)

Examples of individual supported living for adults with intellectual disability
by: Cocks, Errol, et al.
Published: (2016)