Research Article: Young people’s opinions of cancer care in England: the BRIGHTLIGHT cohort
Abstract:
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 study Setting National Health Service hospitals delivering cancer care in England Participants 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.
Introduction:
The landscape of cancer care for young people has developed significantly within England over the past three decades. 1 It is recognised that a cancer diagnosis at a key developmental time-point causes disruption for young people, including long-term and short-term impacts on their physical and mental well-being. 2–4 Studies show a cancer diagnosis can cause prevalent biographical disruption to areas such as education, employment and the development of social and romantic relationships for this population. 5…
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