Health professional perceptions of communicating with adolescents and young adults about bone cancer clinical trial participation
Low recruitment of adolescents and young adults in cancer clinical trials is widely reported and may be linked to limited improvements in survival. Research to date does not adequately explain all underlying reasons for poor trial accrual. This paper reports health professional perceptions of communicating with adolescents and young adults with bone sarcoma about clinical trial participation.
This study used narrative inquiry. Findings are reported from thematic analysis of in-depth interviews with 18 multidisciplinary health professionals working in a supra-regional bone and soft tissue sarcoma centre.
Participants described professional expertise, the development of specialist knowledge and skills and strategies used to develop trusting relationships with adolescents and young adults with bone sarcoma. These factors were perceived to facilitate communication about clinical trial participation. Emergent themes were having credibility through expertise of the team, developing specialist communication skills through reflection on practice, having inclusive approaches to education and training about clinical trials, individual communication styles used to form trusting relationships, using a patient-centred approach to connect with adolescents and young adults, creating time needed to form trusting relationships and effective team working.
We aligned findings of this study with characteristics of patient-physician trust and provide a basis for transferable recommendations. Our findings can be used to inform the development of age-specific, specialist communication skills and highlight health professional education needs about clinical trials. Additional research is needed to explore which elements of team working optimise improved clinical trial participation, in what contexts and why.
KeywordsAdolescents Young adults Cancer Narrative inquiry Clinical trials Patient-professional communication
We thank all healthcare professionals who gave up their time to participate in this study. Thanks also to Professor Helen Dawes, Oxford Brookes University, for reviewing early drafts of this manuscript.
We thank the Bone Cancer Research Trust for funding this study (Grant Number BCRT 21/10) and the National Institute for Health Research, Teenage Cancer Trust and Oxford Brookes University for financially supporting the authors of this study.
Compliance with ethical standards
We e-mailed invitations with participant information packs to health professionals inviting them to participate in an interview and followed the e-mail with a telephone invitation. We obtained written and informed consent from potential participants. We assured anonymity and confidentiality, and participants were informed they could withdraw from the study at any time without giving a reason.
Statement of confidentiality
We confirm all personal identifiers have been removed or disguised, so the persons described are not identifiable and cannot be identified through the details of the story.
Conflict of interest
The authors declare that they have no conflict of interest.
- 1.Bleyer A, Barr R. & Ries L.A.G. (2006) Cancer epidemiology in older adolescents and young adults 15 to 29 years of age, including SEER incidence and survival: 1975–2000. NIH, Bethesda, MA, USAGoogle Scholar
- 2.Andritsch E, Beishon M, Bielack S, Bonvalot S, Casali P, Crul M, Bolton RD et al (2017) ECCO essential requirements for quality Cancer care: soft tissue sarcoma in adults and bone sarcoma. A critical review. Crit Rev Oncol Hematol 110:94–105. https://doi.org/10.1016/j.critrevonc.2016.12.002 CrossRefPubMedGoogle Scholar
- 7.Independent Cancer Taskforce (2015) Achieving world class cancer outcomes, A Strategy for England 2015–2020. https://www.cancerresearchuk.org/about-us/cancer-strategy-in-england. Accessed 30 June 2018
- 8.Ferrari A, Trama A, De Paoli A, Bergeron C, Merks JHM, Jenney M, Orbach D et al. (2017) Access to clinical trials for adolescents with soft tissue sarcomas: enrollment in European pediatric Soft tissue sarcoma Study Group (EpSSG) protocols. Pediatr Blood Cancer 64. doi: https://doi.org/10.1002/pbc.26348
- 10.Read K, Fernandez CV, Gao J, Strahlendorf C, Moghrabi A, Pentz RD, Barfield RC, Baker JN, Santor D, Weijer C, Kodish E (2009) Decision-making by adolescents and parents of children with cancer regarding health research participation. Pediatrics 124:959–965. https://doi.org/10.1542/peds.2008-2878 CrossRefPubMedGoogle Scholar
- 12.Pearce S, Brownsdon A, Fern L, Gibson F, Whelan J, Lavender V (2016) The perceptions of teenagers, young adults and professionals in the participation of bone cancer clinical trials. Eur J Cancer Care (Engl). https://doi.org/10.1111/ecc.12476
- 13.NHS Choices (2014) Consent to treatment—children and young people at: https://www.nhs.uk/conditions/consent-to-treatment/children/ (accessed 09.05.18)
- 15.Whelan JS, Bielack SS, Marina N, Smeland S, Jovic G, Hook JM, Krailo M, Anninga J, Butterfass-Bahloul T, Böhling T, Calaminus G, Capra M, Deffenbaugh C, Dhooge C, Eriksson M, Flanagan AM, Gelderblom H, Goorin A, Gorlick R, Gosheger G, Grimer RJ, Hall KS, Helmke K, Hogendoorn PC, Jundt G, Kager L, Kuehne T, Lau CC, Letson GD, Meyer J, Meyers PA, Morris C, Mottl H, Nadel H, Nagarajan R, Randall RL, Schomberg P, Schwarz R, Teot LA, Sydes MR, Bernstein M, EURAMOS collaborators (2015) EURAMOS-1, an international randomised study for osteosarcoma: results from pre-randomisation treatment. Ann Oncol 26:407–414. https://doi.org/10.1093/annonc/mdu526 CrossRefPubMedGoogle Scholar
- 16.EUROpean_Ewing_tumour_Working_Initiative_of_National_Groups (2017) Combination chemotherapy with or without peripheral stem cell transplantation, radiation therapy, and/or surgery in treating patients with Ewing’s sarcoma. ISRCTN Registry at: http://www.isrctn.com/ISRCTN61438620 (accessed 09.05.18)
- 17.Fern L, Davies S, Eden T, Feltbower R, Grant R, Hawkins M, Lewis I, Loucaides E, Rowntree C, Stenning S, Whelan J, National Cancer Research Institute (NCRI) Teenage and Young Adult Clinical Studies Development Group (2008) Rates of inclusion of teenagers and young adults in England into National Cancer Research Network clinical trials: report from the National Cancer Research Institute (NCRI) Teenage and Young Adult Clinical Studies Development Group. Br J Cancer 99:1967–1974CrossRefGoogle Scholar
- 18.Schwandt TA (2000) Three epistemological stances for qualitative inquiry: interpretivism, hermeneutics, and social construction. In: Denzin NK, Lincoln YS (eds) Handbook of qualitative research, 2nd edn. Sage Publications, Thousand Oaks, pp 189–213Google Scholar
- 19.Squire C (2008) From experience-centred to socio-culturally narrative approaches to narrative. In: Andrews MSSCTM (ed) Doing narrative research. Sage, London, pp 41–64Google Scholar
- 20.National Institute for Health and Clinical Excellence (2005) Guidance on cancer services: improving outcomes in children and young people with cancer, the manual. NICE, London, p 8Google Scholar
- 21.Patton QM (2002) Qualitative research and evaluation methods. Sage, Thousand Oaks, p 230Google Scholar
- 22.Charmaz K (2000) Grounded theory objectivist and constructivist methods. In: DNA L (ed) Handbook of qualitative research, 2nd edn. Sage Publications, Thousand Oaks, pp 509–536Google Scholar
- 23.Freyer DR and Seibel NL (2015) The clinical trials gap for adolescents and young adults with cancer: recent progress and conceptual framework for continued research. Current Pediatric Reports 3:137–145 doi: DOI 10.1007/s40124-015-0075-yGoogle Scholar
- 26.Nuffield Council on Bioethics (2015) Children and clinical research: ethical issues. Nuffield Council on Bioethics, London, pp 131–175Google Scholar
- 32.Erikson EH (1995) Childhood and society. Vintage Books, LondonGoogle Scholar
- 33.Havighurst R (1972) Developmental tasks and education. David McKay Co Inc., New YorkGoogle Scholar
- 35.Taylor RM, Feltbower RG, Aslam N, Raine R, Whelan JS, Gibson F (2016) Modified international e-Delphi survey to define healthcare professional competencies for working with teenagers and young adults with cancer. BMJ Open 6:e011361. https://doi.org/10.1136/bmjopen-2016-011361 CrossRefPubMedPubMedCentralGoogle Scholar
- 39.French C, Stavropoulou C (2016) Specialist nurses’ perceptions of inviting patients to participate in clinical research studies: a qualitative descriptive study of barriers and facilitators. BMC Med Res Methodol 16:96. https://doi.org/10.1186/s12874-016-0204-5 CrossRefPubMedPubMedCentralGoogle Scholar
- 42.National Cancer Action Team (2010) Quality in nursing excellence in cancer care: the contribution of the clinical nurse specialist. Department of Health, LondonGoogle Scholar