Impact of Gastrostomy Placement on Nutritional Status, Physical Health, and Parental Well-Being of Females with Rett Syndrome: A Longitudinal Study of an Australian Population
© 2018 Elsevier Inc. Objectives: To evaluate how age-related trends in nutritional status, physical health, and parental well-being in females with Rett syndrome may be related to gastrostomy placement and to examine the impact of the procedure on mortality. Study design: We included 323 fem...
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| Format: | Journal Article |
| Language: | English |
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MOSBY-ELSEVIER
2018
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| Online Access: | http://purl.org/au-research/grants/nhmrc/1004384 http://hdl.handle.net/20.500.11937/80095 |
| _version_ | 1848764160393871360 |
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| author | Wong, K. Downs, Jennepher Ellaway, C. Baikie, G. Ravikumara, M. Jacoby, P. Christodoulou, J. Elliott, E.J. Leonard, H. |
| author_facet | Wong, K. Downs, Jennepher Ellaway, C. Baikie, G. Ravikumara, M. Jacoby, P. Christodoulou, J. Elliott, E.J. Leonard, H. |
| author_sort | Wong, K. |
| building | Curtin Institutional Repository |
| collection | Online Access |
| description | © 2018 Elsevier Inc.
Objectives: To evaluate how age-related trends in nutritional status, physical health, and parental well-being in females with Rett syndrome may be related to gastrostomy placement and to examine the impact of the procedure on mortality.
Study design: We included 323 females from the Australian Rett Syndrome Study and analyzed their demographic, genetic, and child and parental health data collected from over 6 waves of follow-up questionnaire between 2000 and 2011. We used mixed-effects models to estimate the association between repeated measures of outcomes and age, gastrostomy placement and their interaction and Cox proportional hazards regression models to estimate relative risks of mortality for individuals with gastrostomy.
Results: Nearly one-third (30.3%) of the cases underwent gastrostomy placement. Nutritional status based on weight, height, and body mass index (BMI) improved over time, and BMI was greater in individuals with gastrostomy placement than in those without (adjusted β = 0.87, 95% CI 0.02-1.73). There was no association between gastrostomy placement and individual's physical health outcomes or parental physical and mental health, nor did the age trend of these outcomes vary by gastrostomy insertion status. Nevertheless, among those at risk of suboptimal weight, the all-cause mortality rate was greater in those who had gastrostomy placement compared with those who had not (hazard ratio 4.07, 95% CI 1.96-8.45).
Conclusion: Gastrostomy placement was associated with improvement in BMI in females with Rett syndrome, but its long-term impact on individuals and their families is unclear. |
| first_indexed | 2025-11-14T11:14:56Z |
| format | Journal Article |
| id | curtin-20.500.11937-80095 |
| institution | Curtin University Malaysia |
| institution_category | Local University |
| language | English |
| last_indexed | 2025-11-14T11:14:56Z |
| publishDate | 2018 |
| publisher | MOSBY-ELSEVIER |
| recordtype | eprints |
| repository_type | Digital Repository |
| spelling | curtin-20.500.11937-800952021-01-05T08:07:08Z Impact of Gastrostomy Placement on Nutritional Status, Physical Health, and Parental Well-Being of Females with Rett Syndrome: A Longitudinal Study of an Australian Population Wong, K. Downs, Jennepher Ellaway, C. Baikie, G. Ravikumara, M. Jacoby, P. Christodoulou, J. Elliott, E.J. Leonard, H. Science & Technology Life Sciences & Biomedicine Pediatrics SURVIVAL GROWTH CHILDREN GIRLS EXPERIENCES INFANTS © 2018 Elsevier Inc. Objectives: To evaluate how age-related trends in nutritional status, physical health, and parental well-being in females with Rett syndrome may be related to gastrostomy placement and to examine the impact of the procedure on mortality. Study design: We included 323 females from the Australian Rett Syndrome Study and analyzed their demographic, genetic, and child and parental health data collected from over 6 waves of follow-up questionnaire between 2000 and 2011. We used mixed-effects models to estimate the association between repeated measures of outcomes and age, gastrostomy placement and their interaction and Cox proportional hazards regression models to estimate relative risks of mortality for individuals with gastrostomy. Results: Nearly one-third (30.3%) of the cases underwent gastrostomy placement. Nutritional status based on weight, height, and body mass index (BMI) improved over time, and BMI was greater in individuals with gastrostomy placement than in those without (adjusted β = 0.87, 95% CI 0.02-1.73). There was no association between gastrostomy placement and individual's physical health outcomes or parental physical and mental health, nor did the age trend of these outcomes vary by gastrostomy insertion status. Nevertheless, among those at risk of suboptimal weight, the all-cause mortality rate was greater in those who had gastrostomy placement compared with those who had not (hazard ratio 4.07, 95% CI 1.96-8.45). Conclusion: Gastrostomy placement was associated with improvement in BMI in females with Rett syndrome, but its long-term impact on individuals and their families is unclear. 2018 Journal Article http://hdl.handle.net/20.500.11937/80095 10.1016/j.jpeds.2018.04.050 English http://purl.org/au-research/grants/nhmrc/1004384 http://purl.org/au-research/grants/nhmrc/572742 http://purl.org/au-research/grants/nhmrc/1117105 http://creativecommons.org/licenses/by/4.0/ MOSBY-ELSEVIER fulltext |
| spellingShingle | Science & Technology Life Sciences & Biomedicine Pediatrics SURVIVAL GROWTH CHILDREN GIRLS EXPERIENCES INFANTS Wong, K. Downs, Jennepher Ellaway, C. Baikie, G. Ravikumara, M. Jacoby, P. Christodoulou, J. Elliott, E.J. Leonard, H. Impact of Gastrostomy Placement on Nutritional Status, Physical Health, and Parental Well-Being of Females with Rett Syndrome: A Longitudinal Study of an Australian Population |
| title | Impact of Gastrostomy Placement on Nutritional Status, Physical Health, and Parental Well-Being of Females with Rett Syndrome: A Longitudinal Study of an Australian Population |
| title_full | Impact of Gastrostomy Placement on Nutritional Status, Physical Health, and Parental Well-Being of Females with Rett Syndrome: A Longitudinal Study of an Australian Population |
| title_fullStr | Impact of Gastrostomy Placement on Nutritional Status, Physical Health, and Parental Well-Being of Females with Rett Syndrome: A Longitudinal Study of an Australian Population |
| title_full_unstemmed | Impact of Gastrostomy Placement on Nutritional Status, Physical Health, and Parental Well-Being of Females with Rett Syndrome: A Longitudinal Study of an Australian Population |
| title_short | Impact of Gastrostomy Placement on Nutritional Status, Physical Health, and Parental Well-Being of Females with Rett Syndrome: A Longitudinal Study of an Australian Population |
| title_sort | impact of gastrostomy placement on nutritional status, physical health, and parental well-being of females with rett syndrome: a longitudinal study of an australian population |
| topic | Science & Technology Life Sciences & Biomedicine Pediatrics SURVIVAL GROWTH CHILDREN GIRLS EXPERIENCES INFANTS |
| url | http://purl.org/au-research/grants/nhmrc/1004384 http://purl.org/au-research/grants/nhmrc/1004384 http://purl.org/au-research/grants/nhmrc/1004384 http://hdl.handle.net/20.500.11937/80095 |