Benchmarking care for adults living with SMA

About

A collaborative effort

This benchmarking report delivers a comprehensive evaluation of care & support provision for adults living with SMA in 22 SMA Europe member countries, as well as individual country snapshots of performance against 19 different indicators. These indicators are categorized under the three overarching themes “Healthcare system organization”, “Healthcare delivery” and “Governmental and peer support”.  

The ultimate objective is to provide the SMA patient community with an evidence-based resource that can be used to engage EU and national policymakers, increase awareness of the care challenges faced by adults living with SMA, and define different calls to action for policy change.  

“I am honored to welcome you to this benchmarking report, a testament to our collective commitment to drive progress and enhance the lives of those living with SMA. As the mother of a child living with SMA and President and CEO of SMA Europe, advocacy for SMA has been a personal and professional calling, and I am deeply gratified to share this significant milestone with you.” 

Nicole Gusset, President & CEO of SMA Europe 

In focus

Why a 'benchmarking report’?

SMA has historically been considered a children’s disease. Yet today, adults make up an estimated 50% of the population. And with the increasing availability of innovative treatments that improve quality of life and survival rates, those numbers are set to grow.  

It remains crucial not to overlook the needs of those living with SMA in adulthood. Yet, many essential initiatives focus predominantly on the needs of children living with SMA, leaving adults, and those transitioning into adulthood, relatively neglected.  

The medical and patient communities see an opportunity to enhance national healthcare systems and support structures for adults living with SMA by: 

  • Providing age-appropriate and comprehensive care that delivers the most meaningful health outcomes and quality of life for adults living with SMA. 
  • Establishing more integrated pathways that enable adults living with SMA to optimally manage their multifaceted healthcare needs.
  • Strengthen social and financial support systems that empower adults living with SMA and their caregivers to fulfil their personal goals.
FULL REPORT

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Recommendation

A call to action

SMA Europe recommends the following steps to be taken by international and national stakeholders collectively: 

  • Developing updated European or international adult care and treatment guidelines
  • Reaching alignment on data collection from disease and patient registries 
  • Creating and/or strengthening a collaborative national network of SMA/NMD adult treatment centres 
  • Enabling access to appropriately funded and resourced multidisciplinary care for all adults living with SMA 
  • Prioritising funding to enable accessibility to existing treatment centres 
  • Addressing inequalities in access to pharmacological treatment 
  • Revisiting support framework for persons with disabilities to ensure it is holistic and person-centric 
  • Addressing insufficiencies in formal and informal assistance

The SMA Europe member organisations as well as healthcare professionals made this benchmarking report possible thanks to their invaluable contribution and support. The project is a collaborative effort and shared outcome of a partnership between SMA Europe and F. Hoffmann-La Roche Ltd, driven by their shared vision to improving care in the field of SMA. This report has been made possible with funding provided by Roche as part of this partnership.

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An SMA Europe initiative, supported by:

BiogenNovartisRocheScholar Rock

OdySMA is a participatory advocacy tool. Therefore  SMA Europe [www.sma-europe.eu] cannot warrant the completeness, reliability, or absolute accuracy of the data shared on OdySMA, as there may be changes that our members and supporters do not immediately inform us of. Should you identify inaccuracies or omissions, please contact [laura.gumbert@sma-europe.eu] us and let us know. We count on you!