Research priorities for children’s cancer: a James Lind Alliance Priority Setting Partnership in the UK
Objectives To engage children who have experienced cancer, childhood cancer survivors, their families and professionals to systematically identify and prioritise research questions about childhood cancer to inform the future research agenda.Design James Lind Alliance Priority Setting Partnership.Set...
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| Language: | English |
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BMJ Publishing Group
2023-12-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/13/12/e077387.full |
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| author | Nigel J Hall David Weller Bob Phillips Faith Gibson Susie Aldiss Rachel Dommett Jessica Elizabeth Morgan Alex Brownsdon Helen Morris Julia Chisholm Sonia Malik Jonathan Gower Andy Stewart Dan Saunders Ashley Ball-Gamble Helen Hartley Rachel Hollis Scott Crowther Jenni Hatton Louise Henry Loveday Langton Kirsty Maddock Keeley McEvoy Simon Parke Sue Picton Rosa Reed-Berendt Wendy Tarplee-Morris Amy Walsh Anna Watkins |
| author_facet | Nigel J Hall David Weller Bob Phillips Faith Gibson Susie Aldiss Rachel Dommett Jessica Elizabeth Morgan Alex Brownsdon Helen Morris Julia Chisholm Sonia Malik Jonathan Gower Andy Stewart Dan Saunders Ashley Ball-Gamble Helen Hartley Rachel Hollis Scott Crowther Jenni Hatton Louise Henry Loveday Langton Kirsty Maddock Keeley McEvoy Simon Parke Sue Picton Rosa Reed-Berendt Wendy Tarplee-Morris Amy Walsh Anna Watkins |
| author_sort | Nigel J Hall |
| collection | DOAJ |
| description | Objectives To engage children who have experienced cancer, childhood cancer survivors, their families and professionals to systematically identify and prioritise research questions about childhood cancer to inform the future research agenda.Design James Lind Alliance Priority Setting Partnership.Setting UK health service and community.Methods A steering group oversaw the initiative. Potential research questions were collected in an online survey, then checked to ensure they were unanswered. Shortlisting via a second online survey identified the highest priority questions. A parallel process with children was undertaken. A final consensus workshop was held to determine the Top 10 priorities.Participants Children and survivors of childhood cancer, diagnosed before age 16, their families, friends and professionals who work with this population.Results Four hundred and eighty-eight people submitted 1299 potential questions. These were refined into 108 unique questions; 4 were already answered and 3 were under active study, therefore, removed. Three hundred and twenty-seven respondents completed the shortlisting survey. Seventy-one children submitted questions in the children’s surveys, eight children attended a workshop to prioritise these questions. The Top 5 questions from children were taken to the final workshop where 23 questions in total were discussed by 25 participants (young adults, carers and professionals). The top priority was ‘can we find effective and kinder (less burdensome, more tolerable, with fewer short and long-term effects) treatments for children with cancer, including relapsed cancer?’Conclusions We have identified research priorities for children’s cancer from the perspectives of children, survivors, their families and the professionals who care for them. Questions reflect the breadth of the cancer experience, including diagnosis, relapse, hospital experience, support during/after treatment and the long-term impact of cancer. These should inform funding of future research as they are the questions that matter most to the people who could benefit from research. |
| format | Article |
| id | doaj-art-ce8ea892185940caa12f75edd4654764 |
| institution | OA Journals |
| issn | 2044-6055 |
| language | English |
| publishDate | 2023-12-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-ce8ea892185940caa12f75edd46547642025-08-20T01:48:34ZengBMJ Publishing GroupBMJ Open2044-60552023-12-01131210.1136/bmjopen-2023-077387Research priorities for children’s cancer: a James Lind Alliance Priority Setting Partnership in the UKNigel J Hall0David Weller1Bob Phillips2Faith Gibson3Susie Aldiss4Rachel Dommett5Jessica Elizabeth Morgan6Alex Brownsdon7Helen Morris8Julia Chisholm9Sonia Malik10Jonathan Gower11Andy Stewart12Dan Saunders13Ashley Ball-Gamble14Helen Hartley15Rachel Hollis16Scott Crowther17Jenni Hatton18Louise Henry19Loveday Langton20Kirsty Maddock21Keeley McEvoy22Simon Parke23Sue Picton24Rosa Reed-Berendt25Wendy Tarplee-Morris26Amy Walsh27Anna Watkins282 University Surgery Unit, University of Southampton Faculty of Medicine, Southampton, UKGeneral Practice, University of Edinburgh, Edinburgh, UK1 Centre for Reviews and Dissemination, University of York Alcuin College, York, UKGreat Ormond Street Hospital for Children NHS Foundation Trust, UKSchool of Health Sciences, University of Surrey, Guildford, UK2 Department of Paediatric Haematology and Oncology, Bristol Royal Hospital for Children, Bristol, Bristol, UKCentre for Reviews and Dissemination, University of York, York, UKPatient Representative on the Children’s Cancer Priority Setting Partnership Steering Group, London, UKChildren, Teenage and Young Adult Cancer Operational Delivery Network, South West, Bristol, UKDepartment of Pediatric Oncology, Great Ormond Street Hospital, London, UKYoung Lives Vs Cancer, London, UKJames Lind Alliance, Southampton, UKParent Representative on the Children’s Cancer Priority Setting Partnership Steering Group, Perth, UKThe Christie NHS Foundation Trust, Manchester, UK1 Children’s Cancer and Leukaemia Group, Leicester, UKAlder Hey Children`s NHS Foundation Trust, Liverpool, UKLeeds Children`s Hospital, Leeds, UKParent Representative on the Children’s Cancer Priority Setting Partnership Steering Group, Coventry, UKUniversity Hospitals Birmingham NHS Foundation Trust, Birmingham, UKThe Royal Marsden NHS Foundation Trust, Sutton, UKParent Representative on the Children’s Cancer Priority Setting Partnership Steering Group, London, UKLeeds Children`s Hospital, Leeds, UKMedical Needs Teaching Service, Leeds Children`s Hospital, Leeds, UKRoyal Devon and Exeter NHS Foundation Trust, Exeter, UKLeeds Children`s Hospital, Leeds, UKPsychological Services, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UKThe Little Princess Trust, Hereford, UKParent Representative on the Children’s Cancer Priority Setting Partnership Steering Group, Keswick, UKParent Representative on the Children’s Cancer Priority Setting Partnership Steering Group, London, UKObjectives To engage children who have experienced cancer, childhood cancer survivors, their families and professionals to systematically identify and prioritise research questions about childhood cancer to inform the future research agenda.Design James Lind Alliance Priority Setting Partnership.Setting UK health service and community.Methods A steering group oversaw the initiative. Potential research questions were collected in an online survey, then checked to ensure they were unanswered. Shortlisting via a second online survey identified the highest priority questions. A parallel process with children was undertaken. A final consensus workshop was held to determine the Top 10 priorities.Participants Children and survivors of childhood cancer, diagnosed before age 16, their families, friends and professionals who work with this population.Results Four hundred and eighty-eight people submitted 1299 potential questions. These were refined into 108 unique questions; 4 were already answered and 3 were under active study, therefore, removed. Three hundred and twenty-seven respondents completed the shortlisting survey. Seventy-one children submitted questions in the children’s surveys, eight children attended a workshop to prioritise these questions. The Top 5 questions from children were taken to the final workshop where 23 questions in total were discussed by 25 participants (young adults, carers and professionals). The top priority was ‘can we find effective and kinder (less burdensome, more tolerable, with fewer short and long-term effects) treatments for children with cancer, including relapsed cancer?’Conclusions We have identified research priorities for children’s cancer from the perspectives of children, survivors, their families and the professionals who care for them. Questions reflect the breadth of the cancer experience, including diagnosis, relapse, hospital experience, support during/after treatment and the long-term impact of cancer. These should inform funding of future research as they are the questions that matter most to the people who could benefit from research.https://bmjopen.bmj.com/content/13/12/e077387.full |
| spellingShingle | Nigel J Hall David Weller Bob Phillips Faith Gibson Susie Aldiss Rachel Dommett Jessica Elizabeth Morgan Alex Brownsdon Helen Morris Julia Chisholm Sonia Malik Jonathan Gower Andy Stewart Dan Saunders Ashley Ball-Gamble Helen Hartley Rachel Hollis Scott Crowther Jenni Hatton Louise Henry Loveday Langton Kirsty Maddock Keeley McEvoy Simon Parke Sue Picton Rosa Reed-Berendt Wendy Tarplee-Morris Amy Walsh Anna Watkins Research priorities for children’s cancer: a James Lind Alliance Priority Setting Partnership in the UK BMJ Open |
| title | Research priorities for children’s cancer: a James Lind Alliance Priority Setting Partnership in the UK |
| title_full | Research priorities for children’s cancer: a James Lind Alliance Priority Setting Partnership in the UK |
| title_fullStr | Research priorities for children’s cancer: a James Lind Alliance Priority Setting Partnership in the UK |
| title_full_unstemmed | Research priorities for children’s cancer: a James Lind Alliance Priority Setting Partnership in the UK |
| title_short | Research priorities for children’s cancer: a James Lind Alliance Priority Setting Partnership in the UK |
| title_sort | research priorities for children s cancer a james lind alliance priority setting partnership in the uk |
| url | https://bmjopen.bmj.com/content/13/12/e077387.full |
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