Key findings from The Foundation’s Patient Survey
More than 1,000 people took part in our 2016 Patient Survey and we are very grateful to each and every one of you as this survey has led to The Foundation gaining some vital statistics, a wealth of information, opinions and experiences which will help us to continue supporting patients in the best way possible. It will also help inform our campaigns work and help us raise awareness in order for pituitary patients to receive the best care. Thank you to the volunteer research students at Plymouth University who helped analyse the data.
The results give a clear indication of the impact of pituitary conditions and the array of symptoms that are associated with each condition. The findings show the impact on health, employment, personal relationships, well-being and day to-day life.
We wanted to share a few key findings with you all:
- 64% of patients felt that their career prospects had been affected by having a pituitary condition, with 47% stating that their having a pituitary condition had meant they had to give up work. As one patient said: ‘Extreme fatigue and general reduction in ability to concentrate has made me lose confidence at work and has limited my opportunities as it is a ‘hidden’ disability.’
- 21% of respondents agreed or strongly agreed that they had been discriminated against in the workplace because of their condition.
- The most common symptoms included fatigue (72%), mood swings (58%), anxiety or depression (57%), changes in appearance following their condition (57%), weight gain (48%) and difficulties concentrating (41%). 43% of respondents reported pain and 39% experienced low libido, with 8% experiencing impotence, and 36% reduced fertility or infertility. A further 33% of respondents experienced headaches, 29% reported feeling generally unwell, and 28% experienced difficulties recovering from minor illnesses. 24% of respondents reported dizzy spells and changes to their appetite. 21% reported changes in their behaviour, and 20% reported thin skin.
- Patients are having to wait on average 3-4 years before receiving a diagnosis.
- 44% of respondents stated that their pituitary condition had led to a reduction in social contact. As one patient stated ‘The fatigue and associated symptoms have been debilitating. I can no longer work and I have lost the vast majority of my friends because I can’t go out socialising.’
These figures will really help us to clearly demonstrate in consultations we take part in, how the impact on quality of life, wellbeing, and employment prospects are high. Isolation is also clearly a significant issue. The Foundation will continue to spread awareness to medical professionals as our survey proved there are still lengthy diagnosis times which we know can be very difficult and frustrating for patients.
The Pituitary Foundation helps people access the correct information about their illness, it aims to give them a sense of belonging, it helps them to meet likeminded people, to access the correct healthcare professionals, and to learn about different treatment options. The findings from our survey will allow us to tailor our services and publications to ensure we are doing our best to provide what patients need most. From the results we can see how we can continue to improve our current services and how we can continue to campaign for change to see people affected by a pituitary conditions better able to access the healthcare they deserve.
Further information from the findings of our 2016 survey will be fed through to our members in the coming months. For example, in the next edition of Pituitary Life magazine (out in late February) there is an interesting comparison article from Plymouth University which compares our 2016 survey findings with a similar survey we conducted in 2008. If you would like to receive this magazine to read this article, (alongside medical articles including an article for carers and families by psychologist Sue Jackson, plus 5 new patient stories and patient tips) - you can become a member here.