Revealing results from a survey by the Hellenic Federation of People with MS06.05.2019
There are more than 10,000 people living with multiple sclerosis (MS) in Greece.
At the one-day MS Patient in the Greek Reality conference on the 6th April 2019, Ms. Moira Tzitzika (Vice-President of the Hellenic Federation of People with MS) presented the results of the survey. Ms. Tzitzika pointed out that most of the MS patients in Greece experience a range of issues related to their illness and a lot has to change to provide information, access to employment and rehabilitation services to meet their needs.
The Hellenic Federation of Multiple Sclerosis unveiled a number of important facts from a 2018 survey completed by its member societies. The survey of 200 patients with multiple sclerosis from all over Greece represents their views on MS, the impact on their lives and what kind of support they need.
Main results of the survey
- Patients believe that multiple sclerosis makes their lives more difficult with physical symptoms being the main issue. Only 9% of people believe it has not affected them in any way.
- Almost all respondents are on medication- 43% are taking medication orally while 45% are on injections.
- From of those people not on medication (8%), 29% reported it was due to the lack of treatment for the disease type. The same percentage (29%) mentioned they had decided to stop taking medication.
- 28% of patients have stopped treatment without their doctor’s consent, mainly due to adverse side effects experienced.
- Doctor’s opinion on the choice of treatment and the hope of delaying the disease outweigh any reservation about a new treatment.
- From a new treatment, the most anticipated difference is to improve energy and mood. The other most anticipated benefit is to delay the progression of the disease.
- The greatest impact on the everyday life of patients is the improvement of energy levels. This includes fatigue, improved mobility or improved walking disorders. These symptoms can, for many people, lead to the total or partial discontinuation of work. A large majority (87%) of people expressed that their work life has been affected by MS.
- Apart from the impact on work life, social activities are also badly affected in the lives of 67% of participants.
- 44% of patients have Carer to help them with everyday tasks
- More than half (56%) of the patients seek psychological support.
- Almost a third of people (33%) require education on either the disease or the treatments.
- Activities such as physiotherapy and swimming are considered to have the greatest beneficial impact on everyday life.
- More than half (51%) of respondents reported the benefits of psychological support (talking therapy, counselling etc.)
- Lastly, Multiple Sclerosis Patients Associations in Greece are highly regarded as trustworthy and the information they provide is considered the most reliable (on a par with their doctor’s advice).