Key messages
- This project focused on capturing views of people with allergic rhinitis, often called hay fever.
- Survey responses related to topics about allergic rhinitis risk factors and causes; triggers and symptom impacts; access to healthcare; prevention and management; and system challenges.
- People living with, or caring for someone with allergic rhinitis, considered topics about doctor training, factors causing allergic rhinitis, best types of treatments, influence of diet and gut health, cost or other barriers for individuals to seeing a doctor, effects of pollen, house dust mites and pollutants, and getting allergy blood tests, were priorities for future research on allergic rhinitis.
Project summary
Why we did this:
Allergic rhinitis (hay fever triggered by pollen and dust mite allergies) affects nearly one in four Australians, and the number of people affected has gone up by 50% since 2001. Even though allergic rhinitis is a common condition, there are major health impacts for people living with allergic rhinitis and their families.
This project aimed to identify priorities for future research from the viewpoint of people living with allergic rhinitis to improve care, health and wellbeing. The views of people living with allergic rhinitis were a key focus to help identify priorities for research that has not been done before.
What we did:
An online survey of teenagers and adults living with, or caring for someone with, allergic rhinitis asked about the main concerns and topics for future research. We analysed survey responses to find the common concerns and key questions asked about allergic rhinitis. Each question about allergic rhinitis was checked against lists of current or past related research to avoid overlap.
Online focus groups considered and rated groups of questions about allergic rhinitis, and then ranked all 25 questions in order of priority. This was followed by a workshop with stakeholders (groups providing advocacy or care for people with allergic rhinitis), and individuals with allergic rhinitis, which reviewed and refined the highly ranked questions. The ranking done by stakeholders and consumers during the final workshop prioritised four more key questions about allergic rhinitis that need further research.
What we found:
From 210 survey responses, 693 phrases mentioning 120 topics were mapped to five stages of the journey of a person living with allergic rhinitis;
- Who is likely to develop allergic rhinitis (susceptibility) and causes of allergic rhinitis;
- Triggers and impact of symptoms of allergic rhinitis;
- Access to healthcare: tests and treatments, for allergic rhinitis;
- Ways to prevent and manage allergic rhinitis; and
- Healthcare system level challenges.
The top 10 consumer priorities for allergic rhinitis research:
Two focus groups with a total of 21 people living with allergic rhinitis prioritised these 10 research questions.
Would health professional (doctor) training on hay fever improve hay fever patient outcomes?
What factors interact in development of hay fever?
Which types of allergen immunotherapy (allergen drops or injections) best controls hay fever?
What is cost and impact of hay fever on quality of life?
What diet and supplements (along with nasal sprays and antihistamines) help control hay fever?
What are the financial and other barriers to receiving allergy care?
What is the role gut health (microbiome) in developing and worsening of hay fever?
Can lowering indoor pollutants reduce pollen allergies?
Do year-long, (house dust mite) allergies make springtime hay fever (pollen allergy) worse?
Would universal access to allergy blood tests improve hay fever health outcomes?
Key considerations:
Actively involving consumers in research about allergic rhinitis is important since many people living with allergic rhinitis feel they are often not well supported by the healthcare system. People living with allergic rhinitis are often left to bear the disease cost themselves, and this places them at risk of other allergic conditions, such as asthma.
Consumers and stakeholders mostly had similar research priorities. Four additional research questions from amongst the final 19 questions compiled were highly ranked during the final stakeholders and consumer workshop. These extra questions were about how many people with allergic rhinitis use a management plan, which lifestyle factors can influence allergic rhinitis severity, whether pollen information helps people control allergic rhinitis symptoms, and role of having prior allergies for migrants to Australia.
All people involved favoured questions about things that could be done to improve health outcomes.
What this means:
This project highlighted the value of including the voices of people living with allergic rhinitis in planning future research. Consumers involved in this priority setting project identified a wide range of research priorities that will help set the direction of future research towards topics that matter to them, to improve the lives of people living with allergic rhinitis. The research question of highest priority to consumers was: Would health professional training on hay fever improve patient outcomes?
Infographic summary:
Downloads
QUT CPAR Summary
AR Research Infographic
Project team: Karolina Bednarska, Joy Lee, Saeideh Hajighasemi, Asik Pradhan, Wendy Freeman, Maria Said, Janet M. Davies
Affiliations of the project team: School of Biomedical Sciences, Queensland University of Technology, Brisbane, QLD, Allergy, Asthma and Clinical Immunology, Alfred Health, Melbourne, VIC; Translational Medicine, Monash University, Melbourne, VIC; The National Allergy Centre of Excellence, Murdoch Children’s Research Institute, Melbourne, VIC; Allergy & Anaphylaxis Australia, Sydney, NSW; National Allergy Council, Sydney, New South Wales, Australia.
Acknowledgements: We thank the people living with, or caring for someone with, hay fever, for sharing their insights. We thank the National Allergy Centre of Excellence (NACE) Consumer Advisory Group, especially those in the Project Working Group, as well as the NACE for project support. We are grateful for the contributions of the National Allergy Council, NACE Respiratory Allergy Stream Advisory Group, ASCIA and Asthma Australia. We thank Eleanor Majellano for advice and Mel Butcher (The Social Deck, QLD, Australia) for expert facilitation of online workshops. This project was sponsored by QUT, endorsed by the NACE, and funded by Bayer Healthcare LLC, USA, with co-contribution from National Allergy Council. This project was sponsored and led by the QUT Allergy Research Group, endorsed by the NACE, and funded by Bayer Healthcare LLC, USA, with co-contribution from National Allergy Council. CPAR project information is owned by QUT and used here for the purpose of sharing with people living with allergic rhinitis. Bayer was not involved in the project, analysis or reporting.
Allergy research
To learn more about allergy research at Queensland University of Technology, visit their website.
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