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Spinal Muscular Atrophy Pediatric Pulmonologist

Dr Mary Schroth

Pediatric pulmonologist

Multidisciplinary care in SMA

Dr Mary Schroth, a pediatric pulmonologist, discusses some of the benefits and challenges of the multidisciplinary care team model in spinal muscular atrophy (SMA).

Q: What are some of the issues that may arise when so many healthcare providers deliver care to the same child?

DR SCHROTH: When many healthcare providers are involved in a child’s care, there is opportunity for conflicting recommendations and misunderstandings. Communication and care coordination are essential for the success of multidisciplinary care. One of the challenges is lack of universal access to medical records. When primary care providers and specialty care providers belong to different healthcare systems with health information systems that do not allow access to each other, it is more challenging to coordinate care. Another challenge may occur when emergency care or urgent care is needed and the medical record is not accessible. Then communication about SMA management and the care plan is dependent on the family. It is tremendously helpful for the multidisciplinary team and the family to see a patient on the same day in the same clinic space. It may be a long day for the family. However, there is much greater opportunity for interdisciplinary collaboration, shared decision-making, and care planning between the family and medical care team members. Some primary care provider teams will take on the role of care coordination and be the “medical home” for their complex patients. Medical home is​​​​​​​​​​ an approach to providing comprehensive primary care that facilitates partnerships between patients, clinicians, medical staff, and families. Care within a medical home should be accessible, continuous, comprehensive, patient-and family-centered, coordinated, compassionate, and culturally effective according to the American Academy of Pediatrics.

Q: Please talk about the role of the genetic counselor now and how that may change over time.

DR SCHROTH: The genetic counselor serves a critical role in providing information and guidance to families after diagnosis. This information includes explaining the genetics of SMA and how SMA was passed from parents to child, and considerations as parents think about having more children. Additionally, the genetic counselor provides guidance about which family members should consider consulting with a genetic counselor for genetic testing to determine whether they carry the gene for SMA. For adults with SMA, the genetic counselor can assist with having their partner tested and discuss considerations for having children.

As the SMA landscape evolves, a family’s questions regarding genetics will evolve, and it is important to have a genetic counselor available to help answer them.

Q: Let’s talk about the multidisciplinary SMA care team and how this model has evolved over the years.

DR SCHROTH: The evolution of neuromuscular care and SMA care to be more multidisciplinary team focused has paralleled the advancement of technology and other therapies for SMA, such as devices that support breathing, better knowledge about nutrition, musculoskeletal devices, and orthopedic techniques. New technology and therapies have provided more options for care, with prolonged survival and improved quality of life. Availability and management of these therapies and technology requires the expertise of multiple disciplines. No one specialist can meet all the needs of the person with SMA. The multidisciplinary/interdisciplinary care team has the potential to decrease healthcare costs through proactive care planning with the family, and can also support the primary healthcare provider to provide optimal care in his or her local community.

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