Jessica O Boyce1,2, Victoria E Jackson3,4, Olivia van Reyk1, Richard Parker5, Adam P Vogel2,6,7, Else Eising8, Sarah E Horton1,2, Nathan A Gillespie5,9, Ingrid E Scheffer10,11, David J Amor12,13, Michael S Hildebrand10, Simon E Fisher8,14, Nicholas G Martin5, Sheena Reilly15, Melanie Bahlo3,4, Angela T Morgan1,2,13. 1. Speech and Language, Murdoch Children's Research Institute, Melbourne, VIC, Australia. 2. Department of Audiology and Speech Pathology, University of Melbourne, Parkville, VIC, Australia. 3. Population Health and Immunity Division, The Walter and Eliza Hall Institute of Medical Research, Parkville, VIC, Australia. 4. Department of Medical Biology, University of Melbourne, Parkville, VIC, Australia. 5. Queensland Institute for Medical Research, Berghofer Medical Research Institute, Brisbane, Australia. 6. Centre for Neuroscience of Speech, University of Melbourne, Parkville, VIC, Australia. 7. Redenlab Inc, Melbourne, VIC, Australia. 8. Language and Genetics Department, Max Planck Institute for Psycholinguistics, Nijmegen, the Netherlands. 9. Virginia Institute for Psychiatric and Behavioral Genetics, Virginia Commonwealth University, VA, USA. 10. Epilepsy Research Centre, Department of Medicine, University of Melbourne, Heidelberg, VIC, Australia. 11. Florey Institute of Neuroscience and Mental Health, Parkville, VIC, Australia. 12. Department of Paediatrics, University of Melbourne, Parkville, VIC, Australia. 13. Royal Children's Hospital. 14. Donders Institute for Brain, Cognition and Behaviour, Radboud University, Nijmegen, the Netherlands. 15. Menzies Health Institute Queensland, Griffith University, Southport, Australia.
Abstract
AIM: To examine the phenomenology of stuttering across the lifespan in the largest prospective cohort to date. METHOD: Participants aged 7 years and older with a history of developmental stuttering were recruited. Self-reported phenotypic data were collected online including stuttering symptomatology, co-occurring phenotypes, genetic predisposition, factors associated with stuttering severity, and impact on anxiety, education, and employment. RESULTS: A total of 987 participants (852 adults: 590 males, 262 females, mean age 49 years [SD = 17 years 10 months; range = 18-93 years] and 135 children: 97 males, 38 females, mean age 11 years 4 months [SD = 3 years; range = 7-17 years]) were recruited. Stuttering onset occurred at age 3 to 6 years in 64.0%. Blocking (73.2%) was the most frequent phenotype; 75.9% had sought stuttering therapy and 15.5% identified as having recovered. Half (49.9%) reported a family history. There was a significant negative correlation with age for both stuttering frequency and severity in adults. Most were anxious due to stuttering (90.4%) and perceived stuttering as a barrier to education and employment outcomes (80.7%). INTERPRETATION: The frequent persistence of stuttering and the high proportion with a family history suggest that stuttering is a complex trait that does not often resolve, even with therapy. These data provide new insights into the phenotype and prognosis of stuttering, information that is critically needed to encourage the development of more effective speech therapies. WHAT THIS PAPER ADDS: Half of the study cohort had a family history of stuttering. While 75.9% of participants had sought stuttering therapy, only 15.5% identified as having recovered. There was a significant negative correlation between age and stuttering frequency and severity in adults.
AIM: To examine the phenomenology of stuttering across the lifespan in the largest prospective cohort to date. METHOD: Participants aged 7 years and older with a history of developmental stuttering were recruited. Self-reported phenotypic data were collected online including stuttering symptomatology, co-occurring phenotypes, genetic predisposition, factors associated with stuttering severity, and impact on anxiety, education, and employment. RESULTS: A total of 987 participants (852 adults: 590 males, 262 females, mean age 49 years [SD = 17 years 10 months; range = 18-93 years] and 135 children: 97 males, 38 females, mean age 11 years 4 months [SD = 3 years; range = 7-17 years]) were recruited. Stuttering onset occurred at age 3 to 6 years in 64.0%. Blocking (73.2%) was the most frequent phenotype; 75.9% had sought stuttering therapy and 15.5% identified as having recovered. Half (49.9%) reported a family history. There was a significant negative correlation with age for both stuttering frequency and severity in adults. Most were anxious due to stuttering (90.4%) and perceived stuttering as a barrier to education and employment outcomes (80.7%). INTERPRETATION: The frequent persistence of stuttering and the high proportion with a family history suggest that stuttering is a complex trait that does not often resolve, even with therapy. These data provide new insights into the phenotype and prognosis of stuttering, information that is critically needed to encourage the development of more effective speech therapies. WHAT THIS PAPER ADDS: Half of the study cohort had a family history of stuttering. While 75.9% of participants had sought stuttering therapy, only 15.5% identified as having recovered. There was a significant negative correlation between age and stuttering frequency and severity in adults.