EUPESMA Series
EUPESMA 2023
Our 2023 European Patient Experience Survey (EUPESMA) on SMA and Clinical Trials is now live!
What would YOU like to see in future clinical trials for SMA?
This year’s EUPESMA survey focuses on SMA and clinical trials. Clinical trials are a vital part of drug development, but participating in them can be a delicate decision and challenging experience.
We want to advocate for clinical trials that are relevant, worthy, and tailored to the needs of people living with SMA!
Whether you have already or have never participated in clinical trials before, let us hear your thoughts.
The survey is open to people living with SMA (16 years old or older) and their parents.
It is available in English, Czech, Dutch, French, German, Greek, Italian, Polish, Romanian, Russian, Serbian, Spanish, Swedish, and Ukrainian.
Your voice
- say stabilisation of disease is a success
- 97%
Real people, real data
Our European Patient Experience Survey (EUPESMA) Series are designed to map the experiences and expectations and to ascertain the needs and wants of people living with SMA. With this evidence, SMA Europe advocates for equal access to optimal treatment and care in Europe.
“Systematically collecting the patients’
perspectives across Europe is a powerful tool
to advocate for universal needs.”
Key data EUPESMA-2021
- responses in 2021
- 1808
- No advice from a nutritionist or dietician
- 61%
- Average hours of physiotherapy per week
- 4
Demography and access
Physiotherapy
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Hours of physiotherapy per week ranged from 0 to 50, with an average of 4 hours per week.
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Our community considers 7 hours per week to be the ideal amount of physiotherapy.
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However, costs (28%), lack of qualified therapists (28%), lack of time (26%) or motivation (10%) prevented from achieving this standard.
Nutrition
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65% experience nutrition problems and 20% are on a special diet.
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Of 12% having a feeding tube, 69% exclusively feed through the feeding tube.
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61% do not receive advice from a nutritionist or dietician, 20% did so in the past, and only 18% receive advice presently.
Treatment
65% received treatment, 9.8% would start soon, 18.1% did not receive treatment, and 2.3% had received treatment, but stopped.
Snapshot of EUPESMA-2021
Participation by mobility status
The question
Why do we need Pan-European patient surveys?
- Access to SMA treatment and care is fragmented across Europe
- Medicines access across different subgroups of people living with SMA is unequal.
- A common Pan European voice is impactful to inform stakeholders about our experiences and also needs, and will eventually help to facilitate change.
- Our previous surveys and especially also EUPESMA-2019 survey showed unequal treatment access across different age groups, SMA types and mobility levels, with the trends between access and either type or mobility severity level lacking in alignment. Based on these outcomes, SMA Europe shaped new projects such as OdySMA and DaLy.
An SMA Europe series
Our SMA patient expectations surveys
Our 1st survey
Our first survey, published in 2017, sought to obtain a view on the clinical state of European people living with Type II and Type III SMA, the impact of this situation on their quality of life and their expectations regarding clinical development.
Our EUPESMA-2019
Our second survey, published in 2021, sought to understand the treatment expectations of people living with SMA after the approval of the first therapy, the realities of daily living and access to clinical trials and therapy, and how this varied according to parameters such as age and disease severity.
Our publications
- EUPESMA - 2019 Patient Summary
- 2021 - Understanding European patient expectations towards current therapeutic development in spinal muscular atrophy
- 2021 - Impact of Fatigue, Pain, and Psychological Problems on Perceived Quality of Life in Pediatric SMA Patients
- 2017 - Disease impact on general well-being and therapeutic expectations of European Type II and Type III spinal muscular atrophy patients