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Patient-reported outcome measures for cancer caregivers: a systematic review
PURPOSE: Informal caregivers provide invaluable help and support to people with cancer. As treatments extend survival and the potential burdens on carers increase, there is a need to assess the impact of the role. This systematic review identified instruments that measure the impact of caregiving, e...
Autores principales: | , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Springer International Publishing
2016
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4945691/ https://www.ncbi.nlm.nih.gov/pubmed/26872911 http://dx.doi.org/10.1007/s11136-016-1239-0 |
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author | Shilling, Valerie Matthews, Lucy Jenkins, Valerie Fallowfield, Lesley |
author_facet | Shilling, Valerie Matthews, Lucy Jenkins, Valerie Fallowfield, Lesley |
author_sort | Shilling, Valerie |
collection | PubMed |
description | PURPOSE: Informal caregivers provide invaluable help and support to people with cancer. As treatments extend survival and the potential burdens on carers increase, there is a need to assess the impact of the role. This systematic review identified instruments that measure the impact of caregiving, evaluated their psychometric performance specifically in cancer and appraised the content. METHODS: A two-stage search strategy was employed to: (1) identify instruments that measure the impact of caregiving, and (2) run individual searches on each measure to identify publications evaluating psychometric performance in the target population. Searches were conducted in MEDLINE, EMBASE, CINAHL and PsycINFO and restricted to English for instrument used and article language. Psychometric performance was evaluated for content and construct validity, internal consistency, test–retest reliability, precision, responsiveness and acceptability. Individual scale items were extracted and systematically categorised into conceptual domains. RESULTS: Ten papers were included reporting on the psychometric properties of eight measures. Although construct validity and internal consistency were most frequently evaluated, no study comprehensively evaluated all relevant properties. Few studies met our inclusion criteria so it was not possible to consider the psychometric performance of the measures across a group of studies. Content analysis resulted in 16 domains with 5 overarching themes: lifestyle disruption; well-being; health of the caregiver; managing the situation and relationships. CONCLUSIONS: Few measures of caregiver impact have been subject to psychometric evaluation in cancer caregivers. Those that have do not capture well changes in roles and responsibilities within the family and career, indicating the need for a new instrument. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1007/s11136-016-1239-0) contains supplementary material, which is available to authorized users. |
format | Online Article Text |
id | pubmed-4945691 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2016 |
publisher | Springer International Publishing |
record_format | MEDLINE/PubMed |
spelling | pubmed-49456912016-07-26 Patient-reported outcome measures for cancer caregivers: a systematic review Shilling, Valerie Matthews, Lucy Jenkins, Valerie Fallowfield, Lesley Qual Life Res Review PURPOSE: Informal caregivers provide invaluable help and support to people with cancer. As treatments extend survival and the potential burdens on carers increase, there is a need to assess the impact of the role. This systematic review identified instruments that measure the impact of caregiving, evaluated their psychometric performance specifically in cancer and appraised the content. METHODS: A two-stage search strategy was employed to: (1) identify instruments that measure the impact of caregiving, and (2) run individual searches on each measure to identify publications evaluating psychometric performance in the target population. Searches were conducted in MEDLINE, EMBASE, CINAHL and PsycINFO and restricted to English for instrument used and article language. Psychometric performance was evaluated for content and construct validity, internal consistency, test–retest reliability, precision, responsiveness and acceptability. Individual scale items were extracted and systematically categorised into conceptual domains. RESULTS: Ten papers were included reporting on the psychometric properties of eight measures. Although construct validity and internal consistency were most frequently evaluated, no study comprehensively evaluated all relevant properties. Few studies met our inclusion criteria so it was not possible to consider the psychometric performance of the measures across a group of studies. Content analysis resulted in 16 domains with 5 overarching themes: lifestyle disruption; well-being; health of the caregiver; managing the situation and relationships. CONCLUSIONS: Few measures of caregiver impact have been subject to psychometric evaluation in cancer caregivers. Those that have do not capture well changes in roles and responsibilities within the family and career, indicating the need for a new instrument. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1007/s11136-016-1239-0) contains supplementary material, which is available to authorized users. Springer International Publishing 2016-02-12 2016 /pmc/articles/PMC4945691/ /pubmed/26872911 http://dx.doi.org/10.1007/s11136-016-1239-0 Text en © The Author(s) 2016 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. |
spellingShingle | Review Shilling, Valerie Matthews, Lucy Jenkins, Valerie Fallowfield, Lesley Patient-reported outcome measures for cancer caregivers: a systematic review |
title | Patient-reported outcome measures for cancer caregivers: a systematic review |
title_full | Patient-reported outcome measures for cancer caregivers: a systematic review |
title_fullStr | Patient-reported outcome measures for cancer caregivers: a systematic review |
title_full_unstemmed | Patient-reported outcome measures for cancer caregivers: a systematic review |
title_short | Patient-reported outcome measures for cancer caregivers: a systematic review |
title_sort | patient-reported outcome measures for cancer caregivers: a systematic review |
topic | Review |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4945691/ https://www.ncbi.nlm.nih.gov/pubmed/26872911 http://dx.doi.org/10.1007/s11136-016-1239-0 |
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