See the published version of this preprint at Health and Quality of Life Outcomes.
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Short report
Esther Moraleda-Sepúlveda
Universidad de Castilla-La Mancha - Centro de Estudios Universitarios Talavera de la Reina
Corresponding Author
ORCiD: https://orcid.org/0000-0001-5486-9455
License:
This work is licensed under a CC BY 4.0 License. Read Full License
Background: Williams Syndrome is a developmental disorder characterized by a variable intellectual disability. People with Williams Syndrome need the intervention of several clinical and educational specialists throughout their life. However, little is known about the impact produced by this disability in their immediate environment, especially in families. The purpose was to know the level of quality of life described by families with Williams Syndrome.
Methods: The sample was made up of 33 families belong to Spanish Williams Syndrome Association who were evaluated using the Kidslife Scale. Their children and adolescents were between 4 and 20 years old. Eight main quality of life domains were evaluated: emotional well-being, physical well-being, material well-being, personal development, interpersonal relations, social inclusion, self-determination and rights
Results: The obtained data indicated that the degree and presence of intellectual disability did not homogeneously influence people’s quality of life, but many variables could alter their quality of life to a greater or lesser extent. There are no significant differences between quality of life areas but significant differences appeared for level of dependence in the self-determination subarea (p<.05).
Conclusions: These results led us to analyse the social and emotional implications for families and their environment.
Keywords
Williams Syndrome, family, quality of life, evaluation
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CURRENT STATUS: Published
View the published article at Health and Quality of Life Outcomes.
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Editor assigned
On 01 Feb, 2021
Reviewers invited
Invitations sent on 01 Feb, 2021
Reviewer #1 agreed
On 01 Feb, 2021
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On 01 Feb, 2021
Editor invited
On 01 Feb, 2021
Version (no preprint)
Posted 06 Feb, 2021
Review #1 received
Received 06 Feb, 2021
Editor assigned
On 01 Feb, 2021
Reviewers invited
Invitations sent on 01 Feb, 2021
Reviewer #1 agreed
On 01 Feb, 2021
Submission checks complete
On 01 Feb, 2021
Editor invited
On 01 Feb, 2021
First submitted
On 20 Jan, 2021
Editorial decision: Minor Revision
On 04 Nov, 2020
This version was not preprinted
Version 2
Posted 14 Dec, 2020
No comments provided
Review #1 received
Received 23 Dec, 2020
Editorial decision: Minor Revision
On 23 Dec, 2020
Editor assigned
On 02 Dec, 2020
Reviewers invited
Invitations sent on 02 Dec, 2020
Reviewer #1 agreed
On 02 Dec, 2020
Submission checks complete
On 02 Dec, 2020
Editor invited
On 02 Dec, 2020
No comments provided
Review #2 received
Received 03 Nov, 2020
Editorial decision: Major Revision
On 03 Nov, 2020
Reviewer #2 agreed
On 05 Oct, 2020
Review #1 received
Received 10 Sep, 2020
Reviewer #1 agreed
On 21 Aug, 2020
Editor assigned
On 18 Aug, 2020
Reviewers invited
Invitations sent on 18 Aug, 2020
Submission checks complete
On 17 Aug, 2020
Editor invited
On 17 Aug, 2020
First submitted
On 14 Aug, 2020
Metrics
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Subject Areas
Health Economics & Outcomes Research
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A new preprint design is coming!
We have improved readability, clarity, accessibility, and opportunities for engagement.
See the published version of this preprint at Health and Quality of Life Outcomes.
This is a preprint, a preliminary version of a manuscript that has not completed peer review at a journal. Research Square does not conduct peer review prior to posting preprints. The posting of a preprint on this server should not be interpreted as an endorsement of its validity or suitability for dissemination as established information or for guiding clinical practice.
Learn more about In Review
Short report
Esther Moraleda-Sepúlveda
Universidad de Castilla-La Mancha - Centro de Estudios Universitarios Talavera de la Reina
Corresponding Author
ORCiD: https://orcid.org/0000-0001-5486-9455
Badges
Prescreen
This manuscript passed our Prescreen assessment
Complete author information
Appropriate declaration statements
Potential risks to human health
Prescreen
Peer Review Timeline
CURRENT STATUS: Published
View the published article at Health and Quality of Life Outcomes.
No community comments so far
Editor assigned
On 01 Feb, 2021
Reviewers invited
Invitations sent on 01 Feb, 2021
Reviewer #1 agreed
On 01 Feb, 2021
Submission checks complete
On 01 Feb, 2021
Editor invited
On 01 Feb, 2021
Version (no preprint)
Posted 06 Feb, 2021
Review #1 received
Received 06 Feb, 2021
Editor assigned
On 01 Feb, 2021
Reviewers invited
Invitations sent on 01 Feb, 2021
Reviewer #1 agreed
On 01 Feb, 2021
Submission checks complete
On 01 Feb, 2021
Editor invited
On 01 Feb, 2021
First submitted
On 20 Jan, 2021
Editorial decision: Minor Revision
On 04 Nov, 2020
This version was not preprinted
Version 2
Posted 14 Dec, 2020
No comments provided
Review #1 received
Received 23 Dec, 2020
Editorial decision: Minor Revision
On 23 Dec, 2020
Editor assigned
On 02 Dec, 2020
Reviewers invited
Invitations sent on 02 Dec, 2020
Reviewer #1 agreed
On 02 Dec, 2020
Submission checks complete
On 02 Dec, 2020
Editor invited
On 02 Dec, 2020
No comments provided
Review #2 received
Received 03 Nov, 2020
Editorial decision: Major Revision
On 03 Nov, 2020
Reviewer #2 agreed
On 05 Oct, 2020
Review #1 received
Received 10 Sep, 2020
Reviewer #1 agreed
On 21 Aug, 2020
Editor assigned
On 18 Aug, 2020
Reviewers invited
Invitations sent on 18 Aug, 2020
Submission checks complete
On 17 Aug, 2020
Editor invited
On 17 Aug, 2020
First submitted
On 14 Aug, 2020
Metrics
Comments: 0
PDF Downloads: ...
HTML Views: ...
Subject Areas
Health Economics & Outcomes Research
License:
This work is licensed under a CC BY 4.0 License. Read Full License
View the published article at Health and Quality of Life Outcomes.
Background: Williams Syndrome is a developmental disorder characterized by a variable intellectual disability. People with Williams Syndrome need the intervention of several clinical and educational specialists throughout their life. However, little is known about the impact produced by this disability in their immediate environment, especially in families. The purpose was to know the level of quality of life described by families with Williams Syndrome.
Methods: The sample was made up of 33 families belong to Spanish Williams Syndrome Association who were evaluated using the Kidslife Scale. Their children and adolescents were between 4 and 20 years old. Eight main quality of life domains were evaluated: emotional well-being, physical well-being, material well-being, personal development, interpersonal relations, social inclusion, self-determination and rights
Results: The obtained data indicated that the degree and presence of intellectual disability did not homogeneously influence people’s quality of life, but many variables could alter their quality of life to a greater or lesser extent. There are no significant differences between quality of life areas but significant differences appeared for level of dependence in the self-determination subarea (p<.05).
Conclusions: These results led us to analyse the social and emotional implications for families and their environment.
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