Voice of People with Fragile X Syndrome and Their Families: Reports from a Survey on Treatment Priorities

To date, there has been limited research on the primary concerns and treatment priorities for individuals with fragile X syndrome (FXS) and their families. The National Fragile X Foundation in collaboration with clinical investigators from industry and academia constructed a survey to investigate th...

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Published in:	Brain sciences Vol. 9; no. 2; p. 18
Main Authors:	Weber, Jayne Dixon, Smith, Elizabeth, Berry-Kravis, Elizabeth, Cadavid, Diego, Hessl, David, Erickson, Craig
Format:	Journal Article
Language:	English
Published:	Switzerland MDPI AG 23.01.2019 MDPI
Subjects:	Age Anxiety Behavior Caregivers characteristics that have the greatest impact Child & adolescent psychiatry Cognitive ability Communication developmental disorders Families & family life FMR1 gene Fragile X syndrome Intellectual disabilities Pediatrics Proteins Qualitative research voice of the patient voice of the person United States > US characteristics that have the greatest impact voice of the person developmental disorders voice of the patient fragile X syndrome FMR1 gene
ISSN:	2076-3425, 2076-3425
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Abstract	To date, there has been limited research on the primary concerns and treatment priorities for individuals with fragile X syndrome (FXS) and their families. The National Fragile X Foundation in collaboration with clinical investigators from industry and academia constructed a survey to investigate the main symptoms, daily living challenges, family impact, and treatment priorities for individuals with FXS and their families, which was then distributed to a large mailing list. The survey included both structured questions focused on ranking difficulties as well as qualitative analysis of open-ended questions. It was completed by 467 participants, including 439 family members or caretakers (family members/caretakers) of someone with FXS, 20 professionals who work with a person with FXS, and 8 individuals with FXS. Respondents indicated three main general areas of concern: Anxiety, behavioral problems, and learning difficulties. Important differences were noted, based on the sex and age of the individual with FXS. The results highlight the top priorities for treatment development for family members/caretakers, as well as a small group of professionals, and an even smaller group of individuals with FXS, while demonstrating challenges with “voice of the patient” research in FXS.
AbstractList	To date, there has been limited research on the primary concerns and treatment priorities for individuals with fragile X syndrome (FXS) and their families. The National Fragile X Foundation in collaboration with clinical investigators from industry and academia constructed a survey to investigate the main symptoms, daily living challenges, family impact, and treatment priorities for individuals with FXS and their families, which was then distributed to a large mailing list. The survey included both structured questions focused on ranking difficulties as well as qualitative analysis of open-ended questions. It was completed by 467 participants, including 439 family members or caretakers (family members/caretakers) of someone with FXS, 20 professionals who work with a person with FXS, and 8 individuals with FXS. Respondents indicated three main general areas of concern: Anxiety, behavioral problems, and learning difficulties. Important differences were noted, based on the sex and age of the individual with FXS. The results highlight the top priorities for treatment development for family members/caretakers, as well as a small group of professionals, and an even smaller group of individuals with FXS, while demonstrating challenges with "voice of the patient,, research in FXS. To date, there has been limited research on the primary concerns and treatment priorities for individuals with fragile X syndrome (FXS) and their families. The National Fragile X Foundation in collaboration with clinical investigators from industry and academia constructed a survey to investigate the main symptoms, daily living challenges, family impact, and treatment priorities for individuals with FXS and their families, which was then distributed to a large mailing list. The survey included both structured questions focused on ranking difficulties as well as qualitative analysis of open-ended questions. It was completed by 467 participants, including 439 family members or caretakers (family members/caretakers) of someone with FXS, 20 professionals who work with a person with FXS, and 8 individuals with FXS. Respondents indicated three main general areas of concern: Anxiety, behavioral problems, and learning difficulties. Important differences were noted, based on the sex and age of the individual with FXS. The results highlight the top priorities for treatment development for family members/caretakers, as well as a small group of professionals, and an even smaller group of individuals with FXS, while demonstrating challenges with "voice of the patient" research in FXS.To date, there has been limited research on the primary concerns and treatment priorities for individuals with fragile X syndrome (FXS) and their families. The National Fragile X Foundation in collaboration with clinical investigators from industry and academia constructed a survey to investigate the main symptoms, daily living challenges, family impact, and treatment priorities for individuals with FXS and their families, which was then distributed to a large mailing list. The survey included both structured questions focused on ranking difficulties as well as qualitative analysis of open-ended questions. It was completed by 467 participants, including 439 family members or caretakers (family members/caretakers) of someone with FXS, 20 professionals who work with a person with FXS, and 8 individuals with FXS. Respondents indicated three main general areas of concern: Anxiety, behavioral problems, and learning difficulties. Important differences were noted, based on the sex and age of the individual with FXS. The results highlight the top priorities for treatment development for family members/caretakers, as well as a small group of professionals, and an even smaller group of individuals with FXS, while demonstrating challenges with "voice of the patient" research in FXS.
Author	Smith, Elizabeth Weber, Jayne Dixon Erickson, Craig Hessl, David Berry-Kravis, Elizabeth Cadavid, Diego
AuthorAffiliation	2 Cincinnati Children’s Hospital Medical Center Division of Child & Adolescent Psychiatry, Cincinnati, OH 45229, USA 5 MIND Institute and Department of Psychiatry and Behavioral Sciences, University of California Davis School of Medicine, Sacramento, CA 95817, USA; drhessl@ucdavis.edu 1 National Fragile X Foundation, McLean, VA 22102, USA 6 Cincinnati Children’s Hospital Medical Center, Division of Child & Adolescent Psychiatry and the University of Cincinnati College of Medicine Department of Psychiatry and Behavioral Neuroscience, Cincinnati, OH 45229, USA; craig.erickson@cchmc.org 3 Departments of Pediatrics, Neurological Sciences, Biochemistry, Rush University Medical Center, Chicago, IL 60612, USA; Elizabeth_Berry-Kravis@rush.edu 4 Fulcrum Therapeutics, Cambridge, MA 02139, USA; dcadavid@fulcrumtx.com
AuthorAffiliation_xml	– name: 3 Departments of Pediatrics, Neurological Sciences, Biochemistry, Rush University Medical Center, Chicago, IL 60612, USA; Elizabeth_Berry-Kravis@rush.edu – name: 4 Fulcrum Therapeutics, Cambridge, MA 02139, USA; dcadavid@fulcrumtx.com – name: 5 MIND Institute and Department of Psychiatry and Behavioral Sciences, University of California Davis School of Medicine, Sacramento, CA 95817, USA; drhessl@ucdavis.edu – name: 6 Cincinnati Children’s Hospital Medical Center, Division of Child & Adolescent Psychiatry and the University of Cincinnati College of Medicine Department of Psychiatry and Behavioral Neuroscience, Cincinnati, OH 45229, USA; craig.erickson@cchmc.org – name: 1 National Fragile X Foundation, McLean, VA 22102, USA – name: 2 Cincinnati Children’s Hospital Medical Center Division of Child & Adolescent Psychiatry, Cincinnati, OH 45229, USA
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SubjectTerms	Age Anxiety Behavior Caregivers characteristics that have the greatest impact Child & adolescent psychiatry Cognitive ability Communication developmental disorders Families & family life FMR1 gene Fragile X syndrome Intellectual disabilities Pediatrics Proteins Qualitative research voice of the patient voice of the person
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Title	Voice of People with Fragile X Syndrome and Their Families: Reports from a Survey on Treatment Priorities
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