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Financial cost and quality of life of patients with spinal muscular atrophy identified by symptoms or newborn screening

Tamara Dangouloff, Mickael Hiligsmann, Nicolas Deconinck, Adèle D'Amico, Andreea M Seferian, François Boemer, Laurent Servais

Free article

Abstract
in English and Spanish

Aim: To compare the societal financial costs and quality of life (QoL) of untreated patients with spinal muscular atrophy (SMA) and treated patients identified because they presented symptoms or were identified by early testing (sibling or newborn screening).

Method: Data from two different sources were used: data collected prospectively in untreated patients from 2016 to 2018 and data collected during a prospective follow-up study from 2018 to 2021. Patients or their caregiver completed a questionnaire that included questions on direct medical and non-medical costs, indirect non-medical costs, and health-related QoL.

Results: Data (median; range) were available for 149 patients (93 untreated - 10 years; 2 years-59 years), 42 patients (6 years 3 months; 9 months-58 years) treated after presenting with symptoms, and 14 patients (1 year 7 months; 5 months-2 years) treated after early diagnosis. Total costs were lower in untreated patients due to the high cost of drugs used in treated patients. Costs were lower for treated patients who were identified by early testing than for treated patients identified because they presented with symptoms. In all groups, patients with two SMN2 copies had higher costs than those with more copies.

Interpretation: Early patient identification and treatment offer the opportunity to reduce the total societal costs of SMA where treatments are available for presymptomatic and postsymptomatic patients.

What this paper adds: Untreated patients with spinal muscular atrophy had lower total financial costs than treated patients. Total financial costs were lower for treated patients identified by early screening than for treated patients identified after symptom onset. Direct financial costs excluding treatment were much lower in treated patients identified by early screening. Hospitalization costs were much lower in patients identified by early screening.

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EACD 2023 Supplemental.

Professor Rocío Palomo-Carrión
University of Castilla-La Mancha

Interview re: Mini-symposium:
 
Powered mobility: Facilitating participation in children with Spinal Muscular Atrophy (SMA) type I. Ready for the race?

In this episode, Julie Parsons, MD, discusses the genetic diagnosis of spinal muscular atrophy (SMA), anticipated clinical findings, the importance of newborn screenings, and the next steps to consider after a positive diagnosis is obtained. This high-level overview includes:

• SMA as an autosomal recessive disease
• Differences in spinal motor neurons (SMN) 1 and 2 at the time of diagnosis and how these drive severity of disease
• Important clinical findings in the diagnosis of SMA, as every child may not be identified with newborn screening
• The importance of newborn screening and critical next steps and logistical considerations when receiving a positive screen in your practice

Presenters:

Julie Parsons, MD
Co-Director, Neuromuscular Clinic
Haberfeld Family Endowed Chair in Pediatric Neuromuscular Disorders
Professor of Clinical Pediatrics and Neurology
Children’s Hospital Colorado
Denver, Colorado

Vanessa Battista, DNP, MBA, RN, MS, CPNP-PC, CHPPN, FPCN
Senior Director of Nursing, Palliative Care
Psychosocial Oncology and Palliative Care
Dana-Farber Cancer Institute
Boston, Massachusetts 

Supported by an educational grant from Biogen

Link to full program: 
bit.ly/41kw2dK

Link to CME: Claim credit - 
bit.ly/40eyBwr

In this episode, Dr. Parsons and Dr. Battista discuss current and emerging medical therapies for the treatment of spinal muscular atrophy (SMA). They review safety, efficacy, and monitoring parameters of current agents, as well as adjuct therapies in the medication pipeline. This high-level overview includes:

• Review of FDA-approved medical therapies: nusinersen, onasemnogene abeparvovec-xioi, and risdiplam
• Discussion of the safety, efficacy, and monitoring parameters for FDA approved medications, as well as adjuctive agents for medication therapy complications
• Review of ongoing clinical trials on anti-myostatin medications and discussion of the role these agents would play if approved by the FDA

Presenters:

Julie Parsons, MD
Co-Director, Neuromuscular Clinic
Haberfeld Family Endowed Chair in Pediatric Neuromuscular Disorders
Professor of Clinical Pediatrics and Neurology
Children’s Hospital Colorado
Denver, Colorado

Vanessa Battista, DNP, MBA, RN, MS, CPNP-PC, CHPPN, FPCN
Senior Director of Nursing, Palliative Care
Psychosocial Oncology and Palliative Care
Dana-Farber Cancer Institute
Boston, Massachusetts

Supported by an educational grant from Biogen

Link to full program:
bit.ly/41kw2dK

Link to CME: Claim credit -
bit.ly/40fkDKD

In this episode, Dr. Battista and Dr. Parsons discuss the importance of care guidelines and the multidisciplinary team in the treatment of spinal muscular atrophy (SMA). This overview will include:

• The role each member of the interdisciplinary team plays in the care of SMA including physical therapists, occupational therapists, and speech therapists
• The importance of continued, ongoing therapy in addition to medication therapy to provide the greatest improvement in SMA care
• How to manage transitions in care, including the transition from pediatrics to adulthood and how to include the necessary support teams
• The role shared decision-making plays in the treatment of patients with SMA

Presenters:

Julie Parsons, MD
Co-Director, Neuromuscular Clinic
Haberfeld Family Endowed Chair in Pediatric Neuromuscular Disorders
Professor of Clinical Pediatrics and Neurology
Children’s Hospital Colorado
Denver, Colorado

Vanessa Battista, DNP, MBA, RN, MS, CPNP-PC, CHPPN, FPCN
Senior Director of Nursing, Palliative Care
Psychosocial Oncology and Palliative Care
Dana-Farber Cancer Institute
Boston, Massachusetts

Supported by an educational grant from Biogen.

Link to full program: 
https://bit.ly/43Dmo7q

Link to CME: Claim credit
https://bit.ly/40gulfX