Evidence map›Paper›PMID 42661209›Full record

ArticleOrphanet journal of rare diseases2026

Psychological symptoms in individuals with Spinal Muscular Atrophy (SMA) and their caregivers - results from a nation-wide study in Germany.

Justine Hussong, Berenike Leibrock, Tabea Huelle, Hannah Mattheus, Erik Landfeldt, Simone Thiele, Maggie C Walter, Michael Zemlin, Eva Moehler, Ulrich Dillmann and 1 more

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Article in Orphanet journal of rare diseases, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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3 · Its place in the literature

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4 · The record

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5 · Who and what money

Authors and funding

11 authors.

Justine HussongDepartment of Child and Adolescent Psychiatry, Saarland University, 66421, Homburg, Germany. Justine.hussong@uks.eu.
Berenike LeibrockDepartment of Medicine, University of Saarland, Saarbruecken, Germany.
Tabea HuelleDepartment of Medicine, University of Saarland, Saarbruecken, Germany.
Hannah MattheusClinical Psychology and Psychotherapy, Saarland University, Saarland, Germany.
Erik LandfeldtIQVIA, Stockholm, Sweden.
Simone ThieleFriedrich Baur Institute at the Department of Neurology, LMU University Hospital, LMU, Munich, Germany.
Maggie C WalterFriedrich Baur Institute at the Department of Neurology, LMU University Hospital, LMU, Munich, Germany.
Michael ZemlinDepartment of General Pediatrics and Neonatology, Saarland University, Homburg, Germany.
Eva MoehlerDepartment of Child and Adolescent Psychiatry, Saarland University, 66421, Homburg, Germany.
Ulrich DillmannDepartment of Neurology, Saarland University, Homburg, Germany.
Marina Flotats-BastardasDepartment of General Pediatrics and Neonatology, Division of Neuropaediatrics, Saarland University, Homburg, Germany.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundThis study investigates the prevalence and associations of psychological symptoms in individuals with Spinal Muscular Atrophy (SMA) and their caregivers, utilizing data from a cross-sectional, observational assessment conducted in Germany. Participants were recruited through the national German SMA registry (June - September 2021), and psychological symptoms were assessed using validated measures such as the Strengths and Difficulties Questionnaire (SDQ) in children with SMA (n = 21) and the German Mini-Symptom-Checklist (Mini-SCL) in adults with SMA (n = 82) and caregivers (n = 67).

resultsResults indicate that children with SMA exhibit lower rates of psychological symptoms compared to adults (9.5% vs. 13.4%), with internalizing symptoms (emotional problems, depression, anxiety) being the most prevalent in both age groups. Caregivers also demonstrate psychological symptoms in 14.9%, particularly those of individuals with SMA type 1. Symptom rates did not differ between groups with different motor function level. Significant correlations between caregiver and patient psychological symptoms were observed, while pharmacological treatment showed no significant impact on symptom rates.

conclusionsPsychological symptoms are common in individuals with SMA and their caregivers, particularly internalizing symptoms, underscoring the importance of routine psychological screening. Additionally, the correlation of patient and caregiver symptoms highlight the interplay between the mental health of both. These findings underscore the importance of integrating psychosocial care for both individuals with SMA and their caregivers to alleviate stress and promote well-being.

trial registrationGerman clinical trial register (DRKS), DRKS00022876. Registered 19 October 2020.

Indexed as

CaregiversMuscular Atrophy, SpinalAdolescentAdultAnxietyChildChild, PreschoolCross-Sectional StudiesDepressionFemaleGermanyHumansMaleMiddle AgedSurveys and QuestionnairesYoung AdultCaregiversInternalizing symptomsMental healthPsychological symptomsPsychosocial careSpinal Muscular Atrophy (SMA)

Identifiers

PMID42661209
PMCPMC13523259

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.