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Beyond Teenage and Young Adult Cancer Care: Care Experiences of Patients Aged 25–39 Years Old in the UK National Health Service

Beyond Teenage and Young Adult Cancer Care: Care Experiences of Patients Aged 25–39 Years Old in the UK National Health Service
Beyond Teenage and Young Adult Cancer Care: Care Experiences of Patients Aged 25–39 Years Old in the UK National Health Service

Aims: Adolescents and young adults aged 15–39 years with cancer face unique medical, practical and psychosocial issues. In the UK, principal treatment centres and programmes have been designed to care for teenage and young adult patients aged 13–24 years in an age-appropriate manner. However, for young adults (YAs) aged 25–39 years with cancer, little access to age-specific support is available. The aim of this study was to examine this possible gap by qualitatively exploring YA care experiences, involving patients as research partners in the analysis to ensure robust results. Materials and methods: We conducted a phenomenological qualitative study with YAs diagnosed with any cancer type between ages 25 and 39 years old in the last 5 years. Participants took part in interviews or focus groups and data were analysed using inductive thematic analysis. Results were shaped in an iterative process with the initial coders and four YA patients who did not participate in the study to improve the rigor of the results. Results: Sixty-five YAs with a range of tumour types participated. We identified seven themes and 13 subthemes. YAs found navigating the healthcare system difficult and commonly experienced prolonged diagnostic pathways. Participants felt under-informed about clinical details and the long-term implications of side-effects on daily life. YAs found online resources overwhelming but also a source of information and treatment support. Some patients regretted not discussing fertility before cancer treatment or felt uninformed or rushed when making fertility preservation decisions. A lack of age-tailored content or age-specific groups deterred YAs from accessing psychological support and rehabilitation services. Conclusions: YAs with cancer may miss some benefits provided to teenagers and young adults in age-tailored cancer services. Improving services for YAs in adult settings should focus on provision of age-specific information and access to existing relevant support.

Cancer services, health services, oncology, patient involvement, qualitative research, young adult
0936-6555
494-506
Lidington, E.
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Darlington, A.s.
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Vlooswijk, C.
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Beardsworth, S.
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Mccaffrey, S.
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Tang, S.
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Stallard, K.
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Younger, E.
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Edwards, P.
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Ali, A.i.
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Nandhabalan, M.
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Din, A.
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Starling, N.
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Larkin, J.
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Stanway, S.
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Nobbenhuis, M.
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Banerjee, S.
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Szucs, Z.
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Gonzalez, M.
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Sirohi, B.
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Husson, O.
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Van Der Graaf, W.t.a.
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Lidington, E.
147f09f4-d885-4c1f-b211-340bbe433b4e
Darlington, A.s.
472fcfc9-160b-4344-8113-8dd8760ff962
Vlooswijk, C.
72014811-2f71-4bad-86f9-b76389c4ed5b
Beardsworth, S.
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Mccaffrey, S.
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Tang, S.
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Stallard, K.
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Younger, E.
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Edwards, P.
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Ali, A.i.
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Nandhabalan, M.
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Din, A.
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Starling, N.
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Larkin, J.
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Stanway, S.
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Nobbenhuis, M.
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Banerjee, S.
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Szucs, Z.
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Gonzalez, M.
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Sirohi, B.
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Husson, O.
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Van Der Graaf, W.t.a.
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Lidington, E., Darlington, A.s., Vlooswijk, C., Beardsworth, S., Mccaffrey, S., Tang, S., Stallard, K., Younger, E., Edwards, P., Ali, A.i., Nandhabalan, M., Din, A., Starling, N., Larkin, J., Stanway, S., Nobbenhuis, M., Banerjee, S., Szucs, Z., Gonzalez, M., Sirohi, B., Husson, O. and Van Der Graaf, W.t.a. (2021) Beyond Teenage and Young Adult Cancer Care: Care Experiences of Patients Aged 25–39 Years Old in the UK National Health Service. Clinical Oncology, 33 (8), 494-506. (doi:10.1016/j.clon.2021.02.010).

Record type: Article

Abstract

Aims: Adolescents and young adults aged 15–39 years with cancer face unique medical, practical and psychosocial issues. In the UK, principal treatment centres and programmes have been designed to care for teenage and young adult patients aged 13–24 years in an age-appropriate manner. However, for young adults (YAs) aged 25–39 years with cancer, little access to age-specific support is available. The aim of this study was to examine this possible gap by qualitatively exploring YA care experiences, involving patients as research partners in the analysis to ensure robust results. Materials and methods: We conducted a phenomenological qualitative study with YAs diagnosed with any cancer type between ages 25 and 39 years old in the last 5 years. Participants took part in interviews or focus groups and data were analysed using inductive thematic analysis. Results were shaped in an iterative process with the initial coders and four YA patients who did not participate in the study to improve the rigor of the results. Results: Sixty-five YAs with a range of tumour types participated. We identified seven themes and 13 subthemes. YAs found navigating the healthcare system difficult and commonly experienced prolonged diagnostic pathways. Participants felt under-informed about clinical details and the long-term implications of side-effects on daily life. YAs found online resources overwhelming but also a source of information and treatment support. Some patients regretted not discussing fertility before cancer treatment or felt uninformed or rushed when making fertility preservation decisions. A lack of age-tailored content or age-specific groups deterred YAs from accessing psychological support and rehabilitation services. Conclusions: YAs with cancer may miss some benefits provided to teenagers and young adults in age-tailored cancer services. Improving services for YAs in adult settings should focus on provision of age-specific information and access to existing relevant support.

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More information

Accepted/In Press date: 2021
Published date: 12 March 2021
Additional Information: We would like to acknowledge the support from NIHR Biomedical Research Centre at The Royal Marsden and The Institute of Cancer Research, London (NIHR RM/ICR BRC) and the National Institute for Health Research Clinical Research Network (NIHR CRN) for the study and funding of the patient recruitment. Patient involvement in data analysis was funded by the Patient and Public Involvement and Engagement Grants from the NIHR RM/ICR BRC [grant number B079]
Keywords: Cancer services, health services, oncology, patient involvement, qualitative research, young adult

Identifiers

Local EPrints ID: 450177
URI: http://eprints.soton.ac.uk/id/eprint/450177
ISSN: 0936-6555
PURE UUID: 6a070252-774d-4bc3-b1ed-0fe25bb0719b

Catalogue record

Date deposited: 14 Jul 2021 16:56
Last modified: 25 Nov 2021 19:41

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Contributors

Author: E. Lidington
Author: A.s. Darlington
Author: C. Vlooswijk
Author: S. Beardsworth
Author: S. Mccaffrey
Author: S. Tang
Author: K. Stallard
Author: E. Younger
Author: P. Edwards
Author: A.i. Ali
Author: M. Nandhabalan
Author: A. Din
Author: N. Starling
Author: J. Larkin
Author: S. Stanway
Author: M. Nobbenhuis
Author: S. Banerjee
Author: Z. Szucs
Author: M. Gonzalez
Author: B. Sirohi
Author: O. Husson
Author: W.t.a. Van Der Graaf

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