Patient & Caregiver Concerns

Caregiver Support

Caregivers of patients with spinal muscular atrophy (SMA) report neglected aspects of their lives. Caregivers will need different kinds of support depending on factors such as the specific type of SMA their child has, whether they have other children, whether they intend to have future pregnancies, their socioeconomic status, and how extensive their social support network is. Awareness of the family’s support needs is a prerequisite to addressing them.

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Maximizing Quality of Life

Children with SMA have complex medical needs which can lead to diminished quality of life. Historically, patients diagnosed with SMA and their families report significant stress and low quality of life. More recent surveys indicate optimism about medical progress in SMA treatment such that even a therapy that promised just stabilization of motor function would increase the perceived quality of life.

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Effects on Home, School, and Leisure

Patients with SMA face psychological and social challenges that often hinder the quality of life.

Psychological Support

Psychological support for patients and families is a critical but often neglected component of care in SMA.

A Qualitative Research Perspective

Through interviews and qualitative analysis, healthcare professionals can get a sense of the issues that are most important to those affected by SMA.