Many adults living with SMA lead fulfilling and productive lives. And now that supportive care is improving and the therapeutic landscape is changing, care expectations are even greater.1
The characters shown are real patients and the required consent to use their stories has been obtained from the patients and families. Photographs are for illustrative purposes only.
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SMA CAN BE CONFUSING
No one understands the impact of SMA better than the patient. However, there can be confusion and a lack of awareness about the different care options that are available and the benefits they provide.
Optimising the care of adult patients living with SMA is all about delivering high-quality, evidence-based, and patient-centered healthcare.1 More importantly, it’s about helping patients get the most from their lives on a day-to-day basis.
“It is important to adapt the message especially when talking to adult patients to make sure they have understood. If you give information that is too complex, sometimes that gets more confusing for them. I want to be sure that they have understood the message.”2
- Neurologist, Academic Medical Centre, France
THE BENEFITS OF SHARED DECISION MAKING WHEN DISCUSSING CARE OPTIONS
Discussing care options requires a careful appraisal of a patient's goals and expectations. There can be a lot of information to impart. Giving your patients visual aids and printed materials can help them understand more easily.
Given the complex nature of SMA, it is probable that your adult patients will need time to review all the available information on the various care options. Providing time to digest the information will allow them to make an informed decision about the plan that is best suited to their needs. Several consultations may be required in order to reach a mutually agreeable care plan.
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NO ONE KNOWS THEIR SMA BETTER THAN THOSE LIVING WITH IT
Adults living with SMA value healthcare services that set collaborative goals.1 To ensure the best outcome for your patients, it is important to incorporate patient views into clinical care plans and acknowledge the shared wisdom of people living with SMA.1
The goals of adults living with SMA may include maintaining their independence to continue studying, working, travelling or looking after their family.
Involving adults living with SMA in the decision-making process can lead to improved healthcare and better outcomes.8,9
In a study of how adults and adolescents with SMA perceive and experience healthcare,
10 of 25
PARTICIPANTS
described their experience with their healthcare provider as either brief or superficial.1
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"It’s pretty important to me that I've got a good relationship with my doctor. I have to build up a rapport before I open up to them.”1
- Patient living with Type II SMA
WE CAN UNDERSTAND WHAT IS IMPORTANT FOR ADULTS LIVING WITH SMA
In a US survey of adults living with SMA and their caregivers, the five most important treatment goals, ranked in order of importance, were:10
Using the toilet unassisted
Spending time alone/being independent
Engage in social activities/building relationships
Attend to personal hygiene independently
Chew and swallow food
In the same survey, the five most important benefits, in terms of activities of daily living, ranked in order of importance, were:10
Increased mobility independence
Using the toilet unassisted
Self-feeding
Spending time alone/being independent
Turning in bed
In an international survey of adults living with SMA (N=359), the most important issues that had the greatest effects on their lives were:11
Limitations with mobility or walking98,6%OF RESPONDENTS
Inability to do activities 98,6%OF RESPONDENTS
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UNDERSTANDING YOUR PATIENTS AND GOALS
Once you have agreed on the best care options for your patient, it is important to agree on the goals of therapy.These should be specific goals that can be realistically achieved with the chosen care plan. Ideally, these goals should have a defined timeframe.
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“Slowing down a disease that inevitably degenerates and progresses, it represents a greatvictory for me”2
- Neurologist, Hospital Network, Italy
REMEMBER…
There are new treatment options available for adults living with SMA
Without intervention, adults living with SMA will lose motor function
Even the smallest improvement can have a major impact on your patient's quality of life
People living with SMA can share important information regarding the impact of the disease and care needs
Shared decision making can lead to better outcomes and help achieve realistic expectations for adults living with SMA
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The characters shown are real patients and the required consent to use their stories has been obtained from the patients and families. Photographs are for illustrative purposes only.
References
1. Wan HWY, et al. “Getting ready for the adult world”: how adults with spinal muscular atrophy perceive and experience healthcare, transition and well-being. Orphanet J Rare Dis 2019;14:74.
2. IQVIA Qualitative Research 2020. Conduced with 47 adult SMA patients and 36 neurologists in five countries (Canada, France, Germany, Italy and Spain).
3. Rouault F, et al. Disease impact on general well-being and therapeutic expectations of European Type II and Type III spinal muscular atrophy patients. Neuromuscul Disord 2017;27(5):428–38.
4. Mercuri E, et al. Diagnosis and management of spinal muscular atrophy: Part 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscul Disord 2018;28(2):103–15.
5. Finkel RS, et al. Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics. Neuromuscul Disord 2018;28(3):197–207.
6. Darras BT, et al. Nusinersen in later-onset spinal muscular atrophy. Neurology 2019;92(21):e2492–506.
7. Kaufmann P, et al. Prospective cohort study of spinal muscular atrophy types 2 and 3. Neurol 2012;79:1889-1897.
8. De Santis M, et al. Patient empowerment of people living with rare diseases. Its contribution to sustainable and resilient healthcare systems. Ann 1st Super Sanita 2019;55:283–91.
9. Spatz ES, Spertus JA. Shared decision making: a path toward improved patient-centered outcomes. Circ Cardiovasc Qual Outcomes 2012;5:e75–7.
10. Cruz R, et al. Evaluating benefit-risk decision-making in spinal muscular atrophy: a first-ever study to assess risk tolerance in the SMA patient community. Clin Ther 2019;41:943–60.e4.
11. Mongiovi P, et al. Patient reported impact of symptoms in spinal muscular atrophy (PRISM-SMA). Neurology 2018;91:e1206–14.
Discussing care options requires a careful appraisal of a patient's goals and expectations. There can be a lot of information to impart. Giving your patients visual aids and printed materials can help them understand more easily.
Given the complex nature of SMA, it is probable that your adult patients will need time to review all the available information on the various care options. Providing time to digest the information will allow them to make an informed decision about the plan that is best suited to their needs. Several consultations may be required in order to reach a mutually agreeable care plan.
Limitations with mobility or walking98,6%OF RESPONDENTS
Inability to do activities 98,6%OF RESPONDENTS
Once you have agreed on the best care options for your patient, it is important to agree on the goals of therapy. These should be specific goals that can be realistically achieved with the chosen care plan. Ideally, these goals should have a defined timeframe.