Collaborative and Compassionate Cancer Care: cancer strategy for children and young people 2021–2026

This Managed Service Network (MSN) for Children and Young People with cancer (CYPC) strategy celebrates the achievements to date as well as setting out ambitions for the coming 5 years.


Aldiss S, Fern L.A, Phillips B, Gibson F, (2018) 'Teenage and Young Adult Cancer: Research Priorities'. Final Report of the James Lind Alliance Priority Setting Partnership

Aldiss S, Fern L.A, Phillips R.S, Callaghan A, Dyker K, Gravestock H, Groszmann M, Hamrang L, Hough R, McGeachy D, Morgan S, Smith S, Upadhyaya S, Veitch H, Veitch L, Williason M, Whelan J.S, Gibson F, (2019) 'Research priorities for young people with cancer: a UK priority setting partnership with the James Lind Alliance'. May;9:e028119. doi:10.1136 / bmjopen-2018-028119

Barnett M, McDonnell G, DeRosa A, Schuler T, Philip E, Peterson L, Touza K, Jhanwar S, Atkinson TM, Ford JS, (2016) 'Psychosocial outcomes and interventions among cancer survivors diagnosed during adolescence and young adulthood (AYA): a systematic review'. J Cancer Surviv. Oct;10(5):814-31. doi: 10.1007/s11764-016-0527-6. Epub 2016 Feb 26. PMID: 26920873; PMCID: PMC5001943

Bright CJ, Hawkins MM, Guha J, Henson KE, Winter DL, Kelly JS, Feltbower RG, Hall M, Cutter DJ, Edgar AB, Frobisher C, Reulen RC, (2017) 'Risk of Cerebrovascular Events in 178 962 Five-Year Survivors of Cancer Diagnosed at 15 to 39 Years of Age: The TYACSS (Teenage and Young Adult Cancer Survivor Study)'. Circulation. Mar 28;135(13):1194-1210. doi: 10.1161/CIRCULATIONAHA.116.025778. Epub 2017 Jan 25. PMID: 28122884

Bright CJ, Reulen RC, Winter DL, Stark DP, McCabe MG, Edgar, AB, (2019) 'Risk of subsequent primary neoplasms in survivors of adolescent and young adult cancer (Teenage and Young Adult Cancer Survivor Study): a population-based, cohort study'. The Lancet Oncology. Circulation. Feb 20;20(4):531-545. doi: 10.1016/S1470-2045(18)30903-3

British Psychological Society, (2015) 'Children and young people with physical health needs – How psychological services can contribute to the care pathway', Division of Clinical Psychology Faculty for Children, Young People and their Families

British Psychological Society, (2020) 'Psychological Insights for Cancer Services Recovery Planning Guidance'

Children's Cancer and Leukaemia Group, (2017) 'Keeping active during and after treatment'

Cernvall M, Carlbring P, Ljungman L, Ljungman G, von Essen L, (2015) 'Internet-based guided self-help for parents of children on cancer treatment: a randomized controlled trial'. Psychooncology. Sep;24(9):1152-8. doi: 10.1002/pon.3788. Epub 2015 Mar 1. PMID: 25728688; PMCID: PMC5024013

Cohen J, Collins L, Gregerson L, Chandra J, Cohn RJ, (2020) 'Nutritional concerns of survivors of childhood cancer: A "First World" perspective'. Pediatr Blood Cancer. Jun;67 Suppl 3:e28193. doi: 10.1002/pbc.28193. Epub 2020 Jan 29. PMID: 31994836

Department of Health, (2011) 'Quality Criteria for Young People Friendly Health Services', England

Dommett RM, Pring H, Cargill J, Beynon P, Cameron A, Cox R, Nechowska A, Wint A, Stevens MCG, (2019) 'Achieving a timely diagnosis for teenagers and young adults with cancer: the ACE "too young to get cancer?" study'. BMC Cancer. Jun 24;19(1):616. doi: 10.1186/s12885-019-5776-0. PMID: 31234813; PMCID: PMC6591830

Fern LA, Birch R, Whelan J, Cooke M, Sutton S, Neal RD, Gerrand C, Hubbard G, Smith S, Lethaby C, Dommett R, Gibson F, (2013) 'Why can't we improve the timeliness of cancer diagnosis in children, teenagers, and young adults?' BMJ. Oct 29;347:f6493. doi: 10.1136/bmj.f6493. PMID: 24170036

Fern LA, Lewandowski JA, Coxon KM, Whelan J; National Cancer Research Institute Teenage and Young Adult Clinical Studies Group, UK, (2014) 'Available, accessible, aware, appropriate, and acceptable: a strategy to improve participation of teenagers and young adults in cancer trials'. Lancet Oncol. Jul;15(8):e341-50. doi: 10.1016/S1470-2045(14)70113-5. PMID: 24988937

Foster A, Herbert A, Koo M, Taylor R, Gibson F, Whelan J, Lyratzopoulos G, Fern L.A, (TBC) 'Associations between diagnostic time intervals and quality of life, clinical anxiety and depression in adolescents and young adults with cancer: cross sectional analysis of the BRIGHTLIGHT cohort'. British Journal of Cancer

Furness C.L, Smith L, Morris E, Brocklehurst C, Daly S, Hough RE, (2017) 'Cancer Patient Experience in the Teenage Young Adult Population- Key Issues and Trends Over Time: An Analysis of the United Kingdom National Cancer Patient Experience Surveys 2010-2014'. J Adolesc Young Adult Oncol. Sep;6(3):450-458. doi: 10.1089/jayao.2016.0058. Epub 2017 May 19. PMID: 28525286

Healthcare Improvement Scotland, (2014) 'Long term follow up of survivors of childhood cancer', Scottish Intercollegiate Guidelines Network (SIGN) Guideline 132

Henson KE, Reulen RC, Winter DL, Bright CJ, Fidler MM, Frobisher C, Guha J, Wong KF, Kelly J, Edgar AB, McCabe MG, Whelan J, Cutter DJ, Darby SC, Hawkins MM, (2016) 'Cardiac Mortality Among 200 000 Five-Year Survivors of Cancer Diagnosed at 15 to 39 Years of Age: The Teenage and Young Adult Cancer Survivor Study'. Circulation. Nov 15;134(20):1519-1531. doi: 10.1161/CIRCULATIONAHA.116.022514. Epub 2016 Nov 7. PMID: 27821538; PMCID: PMC5106083

Herbert A, Lyratzopoulos G, Whelan J, Taylor RM, Barber J, Gibson F, Fern LA, (2018) 'Diagnostic timeliness in adolescents and young adults with cancer: a cross-sectional analysis of the BRIGHTLIGHT cohort'. Lancet Child Adolesc Health. Mar;2(3):180-190. doi: 10.1016/S2352-4642(18)30004-X. PMID: 29503844; PMCID: PMC5824669

Jenkins H, Gibson F, Morris P, Stevens M, Hatcher H, Glaser A, Toogood A, Levitt G, (2013) ' G176 The National Cancer Survivorship Initiative: A National Approach to Improve the Quality of Aftercare for Survivors of Childhood Cancer', Archives of Disease in Childhood;98:A80

Kennard BD, Stewart SM, Olvera R et al, (2004) 'Nonadherence in Adolescent Oncology Patients: Preliminary Data on Psychological Risk Factors and Relationships to Outcome'. Journal of Clinical Psychology in Medical Settings 11;31–39. doi: 10.1023/B:JOCS.0000016267.21912.74

Kenten C, Ngwenya N, Gibson F, Flatley M, Jones L, Pearce S, Wong G, Black KM, Haig S, Hough R, Hurlow A, Stirling LC, Taylor RM, Tookman A, Whelan J (2019), 'Understanding care when cure is not likely for young adults who face cancer: a realist analysis of data from patients, families and healthcare professionals'. BMJ Open. Jan 28;9(1):e024397. doi: 10.1136/bmjopen-2018-024397. PMID: 30696681; PMCID: PMC6352841

Koo MM, Lyratzopoulos G, Herbert A, Abel GA, Taylor RM, Barber JA, Gibson F, Whelan J, Fern LA, (2020) 'Association of Self-reported Presenting Symptoms With Timeliness of Help-Seeking Among Adolescents and Young Adults With Cancer in the BRIGHTLIGHT Study'. JAMA Netw Open. Sep 1;3(9):e2015437. doi: 10.1001/jamanetworkopen.2020.15437. PMID: 32880648; PMCID: PMC7489839

Lea S, Taylor RM, Martins A, Fern LA, Whelan JS, Gibson F, (2018) 'Conceptualizing age-appropriate care for teenagers and young adults with cancer: a qualitative mixed-methods study'. Adolesc Health Med Ther. Oct 24;9:149-166. doi: 10.2147/AHMT.S182176. PMID: 30498386; PMCID: PMC6207223

Lea S, Martins A, Morgan S, Cargill J, Taylor RM, Fern LA, (2019) 'Health care professional perceptions of online information and support for young people with cancer in the United Kingdom'. Adolesc Health Med Ther. Aug 29;10:103-116. doi: 10.2147/AHMT.S211142. PMID: 31695545; PMCID: PMC6718256

London South Bank University and Great Ormond Street Hospital for Children, (2014) 'Benchmarks for transition from child to adult health services'

Macmillan Cancer Support, (2012), 'The importance of physical activity for people living with and beyond cancer – a concise evidence review'

Matsui M, Taku K, Tsutsumi R, Ueno M, Seto M, Makimoto A, Yuza Y, (2020) 'The role of peer support in psychosocial outcomes among adolescent and young adult (AYA) cancer survivors'. Journal of Clinical Oncology, 38:15_suppl, e22528-e22528

Mental Health Foundation, (2015) 'Fundamentals Facts About Mental Health'

Mulder RL, van der Pal HJH, Levitt GA, Skinner R, Kremer LCM, Brown MC, Bárdi E, Windsor R, Michel G, Frey E, (2016) 'Transition guidelines: An important step in the future care for childhood cancer survivors. A comprehensive definition as groundwork'. Eur J Cancer. Feb;54:64-68. doi: 10.1016/j.ejca.2015.10.007. Epub 2015 Dec 28. PMID: 26735352

Murray H, Pettitt N, Tomas J, (2020) 'Advance Care Planning for Adolescents and Young Adults with Cancer: A Retrospective Case Note Audit from a Regional Specialist Center in the United Kingdom'. J Adolesc Young Adult Oncol. 2020 Dec 21. doi: 10.1089/jayao.2020.0149. Epub ahead of print. PMID: 33347382

Myers RM, Balsamo L, Lu X, Devidas M, Hunger SP, Carroll WL, Winick NJ, Maloney KW, Kadan-Lottick NS, (2014) 'A prospective study of anxiety, depression, and behavioral changes in the first year after a diagnosis of childhood acute lymphoblastic leukemia – A report from the Children's Oncology Group'. Cancer Journal. 120(9);1417-1425. doi: 10.1002/cncr.28578

National Comprehensive Cancer Network, (2020) 'Distress During Cancer Care' NCCN Guidelines for Patients

National Institute for Health and Care Excellence, (2005) 'Improving Outcomes in Children and Young People with Cancer', Cancer Service Guideline, CSG7

National Institute for Health and Care Excellence, (2014) 'Cancer Services for Children and Young People', Quality Standard, QS55

National Institute for Health and Care Excellence, (2016) 'Transition from children's to adults' services for young people using health or social care services', NICE Guideline, NG43

NHS Education for Scotland, (2015) 'The Psychological Therapies Matrix – A guide to delivering evidence based psychological therapies in Scotland'

NHS Education for Scotland and University College London, (2018) 'Psychological Approaches and Interventions in Multidisciplinary Paediatric Settings'

NHS Education for Scotland, (2019) 'Psychological Skills in Physical Healthcare'

NHS Education for Scotland, (2020) 'Training in Psychological Skills – Paediatric Healthcare (TIPS-PH)'

NHS Education for Scotland, (2021) 'NHS Scotland Workforce, Latest Statistics at 31 March 2021'

NHS National Services Scotland, (2019) 'Children and Young People with Cancer in Scotland 2007-2016', Information Services Division

Ngwenya N, Kenten C, Jones L, Gibson F, Pearce S, Flatley M, Hough R, Stirling LC, Taylor RM, Wong G, Whelan J, (2017) 'Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis'. J Adolesc Young Adult Oncol. Jun;6(2):200-212. doi: 10.1089/jayao.2016.0055. Epub 2017 Jan 11. PMID: 28075655; PMCID: PMC5467142

PanCare EU, (2021) 'How will PanCareFollowUp improve survivorship care in Europe?', 25th PanCare EU Meeting, 19th May 2021

Public Health England, (2021) 'Children, teenagers and young adults UK cancer statistics report 2020', Report on behalf of the National Cancer Registration and Analysis Service for England (Public Health England), the Northern Ireland Cancer Registry, the Scottish Cancer Registry (part of Public Health Scotland) and the Welsh Cancer Intelligence and Suveillance Unit (part of Public Health Wales)

Public Health Scotland, (2020) 'Children and Young People with Cancer in Scotland', An Official Statics release for Scotland

Royal College of Paediatrics and Child Health, (2020) 'State of Child Health 2020: Scotland'

Royal College of Physicians of Edinburgh, (2008), 'Think Transition – Developing the essential link between paediatric and adult care', Transition Steering Group

Santacroce SJ, Lee YL, (2006) 'Uncertainty, posttraumatic stress, and health behavior in young adult childhood cancer survivors'. Nurs Res. Jul-Aug;55(4):259-66. doi: 10.1097/00006199-200607000-00006. PMID: 16849978

Scottish Government, (2005) 'Building a Health Service Fit for the Future – A National Framework for Service Change in the NHS in Scotland'

Scottish Government, (2009a) 'Safe Administration of Intrathecal Cytotoxic Chemotherapy', Chief Executive Letter (CEL) 21

Scottish Government, (2009b) 'Better Health, Better Care: National Delivery Plan for Children and Young People's Specialist Services in Scotland'

Scottish Government, (2010) 'Healthcare Quality Strategy for NHS Scotland'

Scottish Government, (2012a) 'Revised Guidance for the Safe Delivery of Systemic Anti-Cancer Therapy', Chief Executive Letter (CEL) 30

Scottish Government, (2012b) 'Cancer Plan for Children and Young People in Scotland 2012-2015', Managed Service Network for Children and Young People with Cancer

Scottish Government, (2016a) 'Right Diagnosis, Right Treatment, Right Team, Right Place: The Cancer Plan for Children and Young People in Scotland 2016-2019', Managed Service Network for Children and Young People with Cancer

Scottish Government, (2016b) 'Ready to Act – a transformational plan for children and young people, their parents, carers and families who require support from allied health professionals (AHPs)'

Scottish Government, (2017a) 'Allied Health Professions Co-creating Wellbeing with the People of Scotland – The Active and Independent Living Programme in Scotland'

Scottish Government, (2017b) 'Mental Health Strategy 2017-2027'

Scottish Government, (2017c) 'Nursing 2030 Vision: Promoting Confident, Competent and Collaborative Nursing for Scotland's Future'

Scottish Government, (2020a) 'Re-mobilise, Recover, Re-design: the framework for NHS Scotland'

Scottish Government, (2020b) 'Recovery and Redesign, cancer services – action plan'

Scottish Government, (2021) 'Queen Elizabeth University Hospital / NHS Greater Glasgow and Clyde Oversight Board: Final Report'

Shim M, Kelly B, Hornik R, (2007) 'Cancer Information Scanning and Seeking Behaviour is Associated with Knowledge, Lifestyle Choices, and Screening'. Journal of Health Communication 11(001);157-172. doi: 10.1080/10810730600637475

Taylor RM, Fern LA, Barber J, Alvarez-Galvez J, Feltbower R, Morris S, Hooker L, McCabe MG, Gibson F, Raine R, Stark DP, Whelan JS, (2019) 'Description of the BRIGHTLIGHT cohort: the evaluation of teenage and young adult cancer services in England'. BMJ Open. Apr 20;9(4):e027797. doi: 10.1136/bmjopen-2018-027797. PMID: 31005941; PMCID: PMC6500338

Teenage Cancer Trust, (2016) 'The Blueprint of Care – for teenagers and young adults with cancer', Second Edition

Teenagers and Young Adults with Cancer, (2016) 'Physical activity in teenagers and young adults with cancer – TYAC best practice statement for health professionals'

Van Kalsbeek RJ, van der Pal HJH, L Hjorth, Winther J.F, Michel G et al, (2021) 'The European multistakeholder PanCareFollowUp project: novel, person-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for cancer survivors and caregivers'. European Journal of Cancer Care. 153;74-85. doi:10.1016/j.ejca.2021.05.030

Von Essen L, Larsson G, Oberg K, Sjoden P.O, (2002) 'Satisfaction with care: associations with health-related quality of life and psychosocial function among Swedish patients with endocrine gastrointestinal tumours'. European Journal of Cancer Care. 11(2);91-99. doi: 10.1046/j.1365-2354.2002.00293.X

West of Scotland Cancer Network, (2017) 'Psychological Therapies and Support Framework for People Affected by Cancer'

World Health Organisation, (2020) 'Guidelines on Physical Activity and Sedentary Behaviour'

Young Lives vs Cancer, (2017) 'Hidden Costs'

Young Minds, (2021) 'Coronavirus: Impact on Young People with Mental Health Needs'

Zabora J, BrintzenhofeSzoc K, Curbow B, Hooker C, Piantadosi S, (2001) 'The prevalence of psychological distress by cancer site'. Psychooncology. Jan-Feb;10(1):19-28. doi: 10.1002/1099-1611(200101/02)10:1<19::aid-pon501>;2-6. PMID: 11180574

Zebrack B, Mathews-Bradshaw B, Siegel S; LIVESTRONG Young Adult Alliance, (2010) 'Quality cancer care for adolescents and young adults: a position statement' J Clin Oncol. 2010 Nov 10;28(32):4862-7. doi: 10.1200/JCO.2010.30.5417. Epub 2010 Sep 20. PMID: 20855821



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