Personal Social Network Analysis in Cerebellar Ataxia: Exploring Correlations with Quality of Life and Functional Outcomes

James Concepción; Ciara de Brun; George Usmanov; Lauren Powell; Basia Rogula; Amar Dhand; Jeremy D Schmahmann

doi:10.1007/s12311-025-01953-5

Personal Social Network Analysis in Cerebellar Ataxia: Exploring Correlations with Quality of Life and Functional Outcomes

Cerebellum. 2026 Jan 12;25(1):8. doi: 10.1007/s12311-025-01953-5.

Authors

James Concepción¹, Ciara de Brun², George Usmanov³, Lauren Powell², Basia Rogula², Amar Dhand³, Jeremy D Schmahmann⁴

Affiliations

¹ Ataxia Center, Laboratory for Neuroanatomy and Cerebellar Neurobiology, Division of Behavioral Neurology, Department of Neurology, Massachusetts General Hospital and Harvard Medical School, 101 Merrimac Street, Suite 310, Boston, MA, 02114, USA.
² Broadstreet Health Economics & Outcomes Research, Vancouver, BC, Canada.
³ Mass General Brigham and Harvard Medical School, Boston, MA, 02114, USA.
⁴ Ataxia Center, Laboratory for Neuroanatomy and Cerebellar Neurobiology, Division of Behavioral Neurology, Department of Neurology, Massachusetts General Hospital and Harvard Medical School, 101 Merrimac Street, Suite 310, Boston, MA, 02114, USA. jschmahmann@mgh.harvard.edu.

PMID: 41524968
DOI: 10.1007/s12311-025-01953-5

Abstract

Patients with cerebellar ataxia experience fatigue, impaired executive function, and psychosocial deficits. Personal social networks affect physical and mental well-being but there are no data on their effect on quality of life (QOL) and function in ataxia. We examined social network metrics in patients with cerebellar ataxia to test the hypothesis that supportive relationships enhance quality of life and physical function. We used a cross-sectional, survey-interview design with the Personal Network Survey for Clinical Research, World Health Organization QOL-BREF (WHOQOL), Functional Staging Scale for Ataxia, Friedreich's Ataxia Rating Scale-Activities of Daily Living (FARS-ADL), and Patient-Reported Outcome Measure of Ataxia (PROM-Ataxia). We used univariate and bivariate descriptive statistics and bivariate correlations to explore relationships between social network characteristics and QOL, and multivariable linear regression for associations between them. In 106 ataxia patients (56 ± 15.3 years), social network size averaged 7.6 ± 2.8 people, mostly friends (52%) and family (33%). Social networks were dense (0.7 ± 0.3) and constrained (0.5 ± 0.1). Omnibus test showed that positive relationships, camaraderie, weekly communication, and high levels of emotional support correlated with PROM-Ataxia Total (p = 0.03), PROM-Ataxia Mental health (p = 0.05), WHOQOL (p = 0.03), FARS-ADL and Functional Staging. Those with constrained social networks and fewer positive relationships reported low QOL, as did those with frequent therapy/counseling and organizational involvement. Positive relationships within social networks of cerebellar ataxia patients positively influence QOL and functional measures. Counterintuitive negative associations with external sources of support need further study to explore causality. Network interventions to enhance emotional support and camaraderie may improve quality of life.

Keywords: Cerebellar ataxia; PROM-Ataxia; Personal social network; Quality of life.

MeSH terms

Activities of Daily Living / psychology
Adult
Aged
Cerebellar Ataxia* / physiopathology
Cerebellar Ataxia* / psychology
Cross-Sectional Studies
Female
Humans
Male
Middle Aged
Quality of Life* / psychology
Social Networking*
Social Support*