Author/Editor		Gosar, David; Košmrlj, Lejla; Lešnik Musek, Petra; Meško, Tamara; Stropnik, Staša; Krkoč, Vesna; Golli, Tanja; Butenko, Tita; Loboda, Tanja; Osredkar, Damjan
Title		Adaptive skills and mental health in children and adolescents with neuromuscular diseases
Type		članek
Vol. and No.		, št. Vol.
Publication year		2020
Volume		str. str.
ISSN		1090-3798 - European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society
Language		eng
Abstract		Background Adaptive skills represent the ways that children and adolescents meet their basic needs for self-care, decision making, communication, and learning in their daily life. Having a neuromuscular disease (NMD) not only presents mental health issues, but also impacts these skills. Aims Our study aimed to compare the adaptive skills and mental health of paediatric patients with the most common NMDs with their healthy peers and assess how NMDs shape the way patients form relationships with others, engage in leisure activities and take care of their daily living needs. Methods We used the Adaptive Behaviour Assessment System (ABAS-3) and Achenbach Child Behaviour Checklist (CBCL) to compare the adaptive skills and mental health symptoms of 50 NMD patients to a demographically-matched control group of 298 peers. We examined specific outcomes of having myotonic dystrophy (DM), Duchenne muscular dystrophy (DMD), Becker muscular dystrophy (BMD), spinal muscular atrophy (SMA) or a mixed group of other NMDs. Results All NMD patients displayed poor practical adaptive skills. When the disease was more likely to involve the central nervous system (DM, DMD) they also showed additional deficits in their conceptual and social skills. Contrary to previous research no increased rate of psychopathological symptoms was found in NMD patients, with the exception of difficulties in the social domain among patients with DM. Conclusions Although most children with NMDs displayed more limited practical skills, the specific profile of adaptive skills for each patient group needs to be taken into consideration when planning school support and other psychosocial interventions.
Keywords		neuromuscular disease behavioural disorders spinal muscular atrophy nevromuskularna bolezen vedenjske motnje mišična atrofija hrbtenice