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Self-reported respiratory symptoms, assessment and management practices among people with neuromuscular disorders in South Africa

Self-reported respiratory symptoms, assessment and management practices among people with neuromuscular disorders in South Africa

Status
Active, not recruiting
Phases
Unknown
Study type
Interventional
Source
PACTR
Registry ID
PACTR202603491412858
Enrollment
149
Registered
2026-03-11
Start date
2026-03-16
Completion date
Unknown
Last updated
2026-09-14

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Musculoskeletal Diseases Respiratory

Interventions

Questionnaire

Sponsors

None self funded
Lead Sponsor

Eligibility

Sex/Gender
All

Inclusion criteria

Inclusion criteria: Children, adolescents, and adults of all races and sexes, who have a confirmed diagnosis of NMD and are registered with the MDFSA. Children and adolescents who are unable to read, write, and/or use a computer due to physical and/or cognitive impairment will be included, with parents or primary caregivers providing proxy responses. Willing individuals who provide voluntary, written, informed consent/assent.

Exclusion criteria

Exclusion criteria: Individuals with chronic respiratory conditions (such as Chronic Obstructive Pulmonary Disease, Cystic Fibrosis, etc.) and any other neurological disorders, in addition to NMD (such as Cerebral Palsy, Down syndrome, and stroke), will be excluded from participation as neurological and/or respiratory co-morbidities will affect the respiratory symptoms, assessment and treatment practices assessed in this study. The aim is to determine the standard of care for patients with NMD, and other co-morbidities will influence the frequency of respiratory assessment and management provided.

Design outcomes

Primary

MeasureTime frame
Descriptive statistics will be used to summarise participant characteristics and questionnaire responses. Categorical variables, such as demographic characteristics, types of respiratory symptoms, assessments and interventions received, and reported barriers to care, will be presented as frequencies and percentages. Continuous variables, including age, number of healthcare visits, and frequency of respiratory and healthcare assessment and treatment sessions, will be summarised using means and standard deviations (SD) for normally distributed data or medians and interquartile ranges (IQR) when data are not normally distributed. Results will be displayed in tables, graphs, and charts to illustrate key findings and patterns in respiratory assessment and management practices among individuals with NMD in SA. Inferential statistical analyses will be conducted in an exploratory rather than confirmatory manner in order to explore associations between demographic or clinical characteristics and reported practices or outcomes. Chi-square tests or Fisher’s exact tests will be used to assess potential associations between categorical variables (e.g., province vs. access to physiotherapy services), while t-tests or ANOVA will be applied to compare continuous outcomes across groups, where data meet normality assumptions. Mann–Whitney U or Kruskal–Wallis tests will be used for non-parametric comparisons. Correlation analyses (e.g., Spearman’s rho) may be performed to assess relationships between functional status and healthcare utilisation. All statistical tests will be two-sided, and a p-value < 0.05 will be considered statistically significant. All analyses will be conducted on Excel and STATA version 18.

Secondary

MeasureTime frame
There will not be a secondary data outcome

Countries

South Africa

Contacts

Public ContactAnri Human

Senior lecturer

anri.human@up.ac.za+27743624055

Outcome results

None listed

Source: PACTR (via WHO ICTRP) · Data processed: Sep 19, 2026