Over the last several decades improvements to treatment and care have created a new phenomenon: for the first time we are seeing a generation of people with bleeding disorders who are living into their senior years. With the newer and emerging therapies, there is hope that they will also be able to enjoy a better quality of life.
This is a welcome change, but it has its challenges. This new older generation is entering unknown territory. They are encountering the issues of ageing faced by the general population and are also the first group to experience the impact of ageing on their bleeding disorder.
‘Early ageing’ is also a problem for some in our community. Many relatively young people with bleeding disorders experience complications usually associated with growing older, including joint and muscle damage, arthritis, pain and mobility problems. This impacts on many aspects of their life and many have difficulty meeting the eligibility criteria to access support services.
It was important for Haemophilia Foundation Australia (HFA) to understand the needs of older people with bleeding disorders into the future. HFA began work on the needs assessment in late 2018 and during 2019 consulted with the bleeding disorders community, specialist health professionals and other relevant organisations. The Getting Older needs assessment report brings together the findings from that consultation.
Some of you have met or spoken on the telephone to Preetha Jayaram, who was employed by HFA on a 12-month project to undertake a needs assessment to help HFA understand the needs of older people with a bleeding disorder. Over the 12 months Preetha consulted widely:
She transcribed all of the interviews and organised the data from the consultation into themes – a huge job.
We were also able to analyse some age-related data from the PROBE (Patient Reported Outcomes Burdens and Experiences) Australia study and we have included the results in the report.
169 people completed the Getting Older Community Survey.
89 (53%) returned the online survey
80 (47%) returned the print survey
133 were older people with bleeding disorders
65% were male
34% were female
104 had haemophilia or carried the gene
19 had von Willebrand disease
15 had a rare clotting factor deficiency
7 had other bleeding disorders
Some had more than one bleeding disorder.
36 were partners or family
19% were male
81% were female
Where did they live?
All states and territories were represented.
45% lived in a capital city
13.5% lived in a rural/urban fringe area
28% lived in a regional/rural/remote area
> What did we learn?
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