Young people’s opinions of cancer care in England: the BRIGHTLIGHT cohort
Objectives The BRIGHTLIGHT cohort study was the national evaluation of cancer services for teenager and young adults (TYA). This was analysis of free-text survey data to better understand their experiences of cancer care.Design Cohort studySetting National Health Service hospitals delivering cancer...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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BMJ Publishing Group
2023-09-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/13/9/e069910.full |
| _version_ | 1797669249405157376 |
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| author | Rachel M Taylor Lorna A Fern Jeremy S Whelan Luke Hughes BRIGHTLIGHT Study Group |
| author_facet | Rachel M Taylor Lorna A Fern Jeremy S Whelan Luke Hughes BRIGHTLIGHT Study Group |
| author_sort | Rachel M Taylor |
| collection | DOAJ |
| description | Objectives The BRIGHTLIGHT cohort study was the national evaluation of cancer services for teenager and young adults (TYA). This was analysis of free-text survey data to better understand their experiences of cancer care.Design Cohort studySetting National Health Service hospitals delivering cancer care in EnglandParticipants 830 young people newly diagnosed with cancer.Interventions Exposure to specialist care in the first 6 months after diagnosis defined as care in a TYA Principal Treatment Centre (PTC). This was categorised as follows: all care in a TYA-PTC (ALL-TYA-PTC), no care in a TYA-PTC (NO-TYA-PTC) so care delivered in a children/adult unit only and some care in a TYA-PTC with additional care in a children’s/adult unit (SOME-TYA-PTC).Primary outcome Data were collected through the BRIGHTLIGHT survey included free-text questions which asked patients ‘what was the best aspects of their experiences of care’ and ‘what aspects could be improved’. These comments were analysed using content analysis. Themes were compared between categories of care, then ranked in order of frequency, ranging from the most endorsed to the least.Results Overall, young people were most positive about their healthcare team, while the area highlighted for improvement was diagnostic experience. Differences between the three groups suggested those who had some or all treatment in a TYA-PTC valued the place of care. Regardless of where TYA were treated their healthcare teams were favourably viewed. Age appropriate place of care was highlighted to be of value for those in PTCs.Conclusions These data show the value young people placed on the care they received in TYA specific wards. Young people who accessed some or all of their care in a TYA-PTC highly endorsed their place of care as one of the best elements of their care, and it is further emphasised by those who had shared care who experienced difficulty with lack of age-appropriate care when treated outside the TYA-PTC. |
| first_indexed | 2024-03-11T20:41:27Z |
| format | Article |
| id | doaj.art-711f77af9d0f422c9739bfdb94e16787 |
| institution | Directory Open Access Journal |
| issn | 2044-6055 |
| language | English |
| last_indexed | 2024-03-11T20:41:27Z |
| publishDate | 2023-09-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj.art-711f77af9d0f422c9739bfdb94e167872023-10-02T02:00:07ZengBMJ Publishing GroupBMJ Open2044-60552023-09-0113910.1136/bmjopen-2022-069910Young people’s opinions of cancer care in England: the BRIGHTLIGHT cohortRachel M Taylor0Lorna A Fern1Jeremy S Whelan2Luke Hughes3BRIGHTLIGHT Study Group4Centre for Nurse, Midwife and Allied Health Profession Led Research (CNMAR), University College London Hospitals NHS Foundation Trust, London, UKCancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust, London, London, UKCancer Division, University College London Hospitals NHS Foundation Trust, London, UKCancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust, London, London, UKCancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust, London, London, UKObjectives The BRIGHTLIGHT cohort study was the national evaluation of cancer services for teenager and young adults (TYA). This was analysis of free-text survey data to better understand their experiences of cancer care.Design Cohort studySetting National Health Service hospitals delivering cancer care in EnglandParticipants 830 young people newly diagnosed with cancer.Interventions Exposure to specialist care in the first 6 months after diagnosis defined as care in a TYA Principal Treatment Centre (PTC). This was categorised as follows: all care in a TYA-PTC (ALL-TYA-PTC), no care in a TYA-PTC (NO-TYA-PTC) so care delivered in a children/adult unit only and some care in a TYA-PTC with additional care in a children’s/adult unit (SOME-TYA-PTC).Primary outcome Data were collected through the BRIGHTLIGHT survey included free-text questions which asked patients ‘what was the best aspects of their experiences of care’ and ‘what aspects could be improved’. These comments were analysed using content analysis. Themes were compared between categories of care, then ranked in order of frequency, ranging from the most endorsed to the least.Results Overall, young people were most positive about their healthcare team, while the area highlighted for improvement was diagnostic experience. Differences between the three groups suggested those who had some or all treatment in a TYA-PTC valued the place of care. Regardless of where TYA were treated their healthcare teams were favourably viewed. Age appropriate place of care was highlighted to be of value for those in PTCs.Conclusions These data show the value young people placed on the care they received in TYA specific wards. Young people who accessed some or all of their care in a TYA-PTC highly endorsed their place of care as one of the best elements of their care, and it is further emphasised by those who had shared care who experienced difficulty with lack of age-appropriate care when treated outside the TYA-PTC.https://bmjopen.bmj.com/content/13/9/e069910.full |
| spellingShingle | Rachel M Taylor Lorna A Fern Jeremy S Whelan Luke Hughes BRIGHTLIGHT Study Group Young people’s opinions of cancer care in England: the BRIGHTLIGHT cohort BMJ Open |
| title | Young people’s opinions of cancer care in England: the BRIGHTLIGHT cohort |
| title_full | Young people’s opinions of cancer care in England: the BRIGHTLIGHT cohort |
| title_fullStr | Young people’s opinions of cancer care in England: the BRIGHTLIGHT cohort |
| title_full_unstemmed | Young people’s opinions of cancer care in England: the BRIGHTLIGHT cohort |
| title_short | Young people’s opinions of cancer care in England: the BRIGHTLIGHT cohort |
| title_sort | young people s opinions of cancer care in england the brightlight cohort |
| url | https://bmjopen.bmj.com/content/13/9/e069910.full |
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