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The development of an English Health-Related Quality of Life (HRQoL) measure for very young children, to be completed by proxy
Background and Aims: There is an increasing awareness that, in order to monitor health outcomes both mortality and morbidity need to be assessed. A common metric used to measure morbidity and functional limitation is the quality adjusted life year or QALY, which incorporates time spent in a health c...
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| Format: | Thesis |
| Language: | English |
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Division of Physiotherapy
2018
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| _version_ | 1867613334783655936 |
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| access_status_str | Open Access |
| author | Verstraete, Janine |
| author2 | Jelsma, Jennifer |
| author_browse | Jelsma, Jennifer Verstraete, Janine |
| author_facet | Jelsma, Jennifer Verstraete, Janine |
| author_sort | Verstraete, Janine |
| collection | Thesis |
| description | Background and Aims: There is an increasing awareness that, in order to monitor health outcomes both mortality and morbidity need to be assessed. A common metric used to measure morbidity and functional limitation is the quality adjusted life year or QALY, which incorporates time spent in a health condition and Health-Related Quality of Life (HRQoL) into the measure. This is of increasing importance in Low Income Countries (LIC) where programmes have been adopted and implemented to address the high burden of child mortality. The ‘first 1000 days’ is one such initiative which has been adopted by the WHO to improve nutritional support, health care and social support for both the mother and child. One of the aims is to improve quality of life during this vulnerable period. As there is currently no appropriate measure of HRQoL in this age group, we set out to develop a valid and reliable, HRQoL instrument for children from 1 month to 3 years old, amenable to the elicitation of preference weights. Methods: The new HRQoL instrument, HRQoL-6D-IT, was based firstly on a mapping review of HRQoL measures for children. The next stage involved eliciting options through cognitive review from caregivers of very young children regarding HRQoL dimensions included in the EQ-5D-Y an existing validated HRQoL measure for older children. The care-givers were requested to identify items to be considered for inclusion, the wording and layout of the new measure. The item pool generated from the literature reviews and cognitive interviews were then assessed through a Delphi study with experts in the field. These items were further reduced through subsequent testing of items and retesting of a preliminary measure. The final items on the HRQoL-6D-IT included: movement, play, pain, relationships, communication and eating and, apart from pain, the descriptors referenced the behaviour of the child to age appropriate behaviour. The HRQoL-6D-IT was then tested for validity and reliability in a group of acutely-ill (AI), chronically-ill (CI) and typically developing (TD) children in two provinces in South Africa: Western and Eastern Cape. Results: The methodology used to identify candidate items was rigorous and yielded items which were developed to be observable with dimension descriptors referring to ‘age appropriate behaviour’. Caregivers were able to reliably report on HRQoL of their very young children from age 1-36 months. The content validity had been established during the development of the instrument. Concurrent validity of the different items (dimensions) was tested between the HRQoL-6D-IT and relevant items from the ASQ, FLACC and NIPS pain scale and Diet History. |
| format | Thesis |
| id | oai:open.uct.ac.za:11427/28366 |
| institution | University of Cape Town (South Africa) |
| language | eng |
| last_indexed | 2026-06-10T12:34:28.941Z |
| license_str | Not specified — see source repository |
| provenance_str_mv | Harvested via OAI-PMH from UCTD — University of Cape Town Open Access Repository |
| publishDate | 2018 |
| publishDateRange | 2018 |
| publishDateSort | 2018 |
| publisher | Division of Physiotherapy |
| publisherStr | Division of Physiotherapy |
| record_format | dspace |
| source_str | UCTD — University of Cape Town Open Access Repository |
| spelling | oai:open.uct.ac.za:11427/28366 The development of an English Health-Related Quality of Life (HRQoL) measure for very young children, to be completed by proxy Verstraete, Janine Jelsma, Jennifer Ramma, Lebogang child Infant toddler pre-schooler Health Health-Related Quality of Life HRQoL proxy Background and Aims: There is an increasing awareness that, in order to monitor health outcomes both mortality and morbidity need to be assessed. A common metric used to measure morbidity and functional limitation is the quality adjusted life year or QALY, which incorporates time spent in a health condition and Health-Related Quality of Life (HRQoL) into the measure. This is of increasing importance in Low Income Countries (LIC) where programmes have been adopted and implemented to address the high burden of child mortality. The ‘first 1000 days’ is one such initiative which has been adopted by the WHO to improve nutritional support, health care and social support for both the mother and child. One of the aims is to improve quality of life during this vulnerable period. As there is currently no appropriate measure of HRQoL in this age group, we set out to develop a valid and reliable, HRQoL instrument for children from 1 month to 3 years old, amenable to the elicitation of preference weights. Methods: The new HRQoL instrument, HRQoL-6D-IT, was based firstly on a mapping review of HRQoL measures for children. The next stage involved eliciting options through cognitive review from caregivers of very young children regarding HRQoL dimensions included in the EQ-5D-Y an existing validated HRQoL measure for older children. The care-givers were requested to identify items to be considered for inclusion, the wording and layout of the new measure. The item pool generated from the literature reviews and cognitive interviews were then assessed through a Delphi study with experts in the field. These items were further reduced through subsequent testing of items and retesting of a preliminary measure. The final items on the HRQoL-6D-IT included: movement, play, pain, relationships, communication and eating and, apart from pain, the descriptors referenced the behaviour of the child to age appropriate behaviour. The HRQoL-6D-IT was then tested for validity and reliability in a group of acutely-ill (AI), chronically-ill (CI) and typically developing (TD) children in two provinces in South Africa: Western and Eastern Cape. Results: The methodology used to identify candidate items was rigorous and yielded items which were developed to be observable with dimension descriptors referring to ‘age appropriate behaviour’. Caregivers were able to reliably report on HRQoL of their very young children from age 1-36 months. The content validity had been established during the development of the instrument. Concurrent validity of the different items (dimensions) was tested between the HRQoL-6D-IT and relevant items from the ASQ, FLACC and NIPS pain scale and Diet History. 2018-09-04T09:46:13Z 2018-09-04T09:46:13Z 2018 2018-09-03T06:40:09Z Doctoral Thesis Doctoral http://hdl.handle.net/11427/28366 eng application/pdf Division of Physiotherapy Faculty of Health Sciences University of Cape Town |
| spellingShingle | child Infant toddler pre-schooler Health Health-Related Quality of Life HRQoL proxy Verstraete, Janine The development of an English Health-Related Quality of Life (HRQoL) measure for very young children, to be completed by proxy |
| thesis_degree_str | Doctoral |
| title | The development of an English Health-Related Quality of Life (HRQoL) measure for very young children, to be completed by proxy |
| title_full | The development of an English Health-Related Quality of Life (HRQoL) measure for very young children, to be completed by proxy |
| title_fullStr | The development of an English Health-Related Quality of Life (HRQoL) measure for very young children, to be completed by proxy |
| title_full_unstemmed | The development of an English Health-Related Quality of Life (HRQoL) measure for very young children, to be completed by proxy |
| title_short | The development of an English Health-Related Quality of Life (HRQoL) measure for very young children, to be completed by proxy |
| title_sort | development of an english health related quality of life hrqol measure for very young children to be completed by proxy |
| topic | child Infant toddler pre-schooler Health Health-Related Quality of Life HRQoL proxy |
| url | http://hdl.handle.net/11427/28366 |
| work_keys_str_mv | AT verstraetejanine thedevelopmentofanenglishhealthrelatedqualityoflifehrqolmeasureforveryyoungchildrentobecompletedbyproxy AT verstraetejanine developmentofanenglishhealthrelatedqualityoflifehrqolmeasureforveryyoungchildrentobecompletedbyproxy |