Multidimensional assessment of diaphragmatic dysfunction in late-onset Pompe disease: a prospective cohort study

Late-onset Pompe disease (LOPD) often leads to progressive respiratory failure due to diaphragmatic involvement. Conventional pulmonary function tests frequently fail to detect early respiratory muscle weakness. We conducted a five-year prospective cohort study of 15 genetically confirmed LOPD patients to evaluate diaphragmatic function using a multidimensional approach that included spirometry, inspiratory/expiratory pressures (MIP/MEP), sniff nasal inspiratory pressure (SNIP), arterial blood gases, and diaphragmatic ultrasound. Data were analyzed using generalized linear mixed models. Forced vital capacity (FVC) declined progressively (− 1.05% per visit, p = 0.010), while diaphragmatic thickening fraction (TF, − 3.46% per visit, p < 0.0001), SNIP (− 2.53 cmH₂O per visit, p = 0.003), and MIP (− 3.56% per visit, p < 0.001) showed earlier and steeper declines. TF and SNIP were significantly more sensitive than FVC in detecting early respiratory involvement (p < 0.05). Patients receiving enzyme replacement therapy (ERT) had slower functional decline, with significantly higher SNIP values (p = 0.003). One patient developed symptomatic diaphragmatic weakness despite preserved FVC. SNIP and TF are more sensitive than FVC for early detection of respiratory dysfunction in LOPD and may allow earlier initiation of enzyme replacement therapy and respiratory support.

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Publication Details

Journal
Orphanet Journal of Rare Diseases
Published
2026-04-07
DOI
https://doi.org/10.1186/s13023-026-04343-0
Primary Topic
Lysosomal Storage Disorders Research
Type
article
Field-Weighted Citation Impact
0.00

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article

Multidimensional assessment of diaphragmatic dysfunction in late-onset Pompe disease: a prospective cohort study

Victoria Villena-Garrido, Miguel Jiménez-Gómez, Javier Sayas Catalán, C. Domínguez-González et al.
Orphanet Journal of Rare Diseases
Lysosomal Storage Disorders Research
article

Multidimensional assessment of diaphragmatic dysfunction in late-onset Pompe disease: a prospective cohort study

Victoria Villena-Garrido, Miguel Jiménez-Gómez, Javier Sayas Catalán, C. Domínguez-González, Laura Bermejo-Guerrero, Paloma Martín-Jiménez, Ana Hernández-Voth, Gema Carvajal-Cuesta, Marta Corral-Blanco
article en

Abstract

Late-onset Pompe disease (LOPD) often leads to progressive respiratory failure due to diaphragmatic involvement. Conventional pulmonary function tests frequently fail to detect early respiratory muscle weakness. We conducted a five-year prospective cohort study of 15 genetically confirmed LOPD patients to evaluate diaphragmatic function using a multidimensional approach that included spirometry, inspiratory/expiratory pressures (MIP/MEP), sniff nasal inspiratory pressure (SNIP), arterial blood gases, and diaphragmatic ultrasound. Data were analyzed using generalized linear mixed models. Forced vital capacity (FVC) declined progressively (− 1.05% per visit, p = 0.010), while diaphragmatic thickening fraction (TF, − 3.46% per visit, p < 0.0001), SNIP (− 2.53 cmH₂O per visit, p = 0.003), and MIP (− 3.56% per visit, p < 0.001) showed earlier and steeper declines. TF and SNIP were significantly more sensitive than FVC in detecting early respiratory involvement (p < 0.05). Patients receiving enzyme replacement therapy (ERT) had slower functional decline, with significantly higher SNIP values (p = 0.003). One patient developed symptomatic diaphragmatic weakness despite preserved FVC. SNIP and TF are more sensitive than FVC for early detection of respiratory dysfunction in LOPD and may allow earlier initiation of enzyme replacement therapy and respiratory support.

Orphanet Journal of Rare Diseases
Universidad Complutense de Madrid (ES), Research Institute Hospital 12 de Octubre (ES)
Sanofi España
Good health and well-being
Openalex Percentile: Top 18%
Lysosomal Storage Disorders Research
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