Using experience-based co-design to improve the pre-treatment care pathway for people diagnosed with head and neck cancer
- 252 Downloads
Recent studies have highlighted that people diagnosed with head and neck cancer (HNC) have complex information needs. They are subject to multiple clinical appointments with numerous healthcare professionals in preparation for their treatment. Speech and language therapists (SLTs) are core members of the HNC multidisciplinary team, providing assessment, prehabilitation and counselling regarding potential treatment effects on the critical functions, including swallowing and communication. We believed the purpose of the pre-treatment speech-language therapy (SLT) consultation within this pathway is not well understood by patients. Whilst the benefits of prophylactic swallowing exercise prescriptions continue to be explored, adherence is a frequently cited challenge in clinical trials. We sought to enhance pre-treatment dysphagia services for patients with head and neck cancer (HNC) undergoing chemoradiation.
A participatory action research approach called experience-based co-design (EBCD) was undertaken at a tertiary cancer hospital in the UK. People who had previous radical radiation treatment for head and neck cancer and staff members within the head and neck unit were recruited to take part in in-depth, one-to-one interviews about their experiences of the pre-treatment SLT head and neck radiation clinic. Patient interviews were video-recorded, analysed and edited down to a 30 min ‘trigger’ film. At a subsequent patient feedback event, the film was shown and an ‘emotional mapping’ exercise was undertaken. Through facilitated discussion, patient priorities for change were agreed and recorded. At a staff feedback event, key themes from the staff interviews were discussed and priority areas for change identified. The project culminated in a joint patient and staff event where the film was viewed, experiences shared and joint priorities for change agreed. Task and finish groups were developed to implement these changes.
Seven patients and seven staff members participated. All seven patients had undergone radical (chemo-) radiation for HNC. At least 2 months had elapsed since their final treatment date and all participants were within 9 months of their definitive treatment. Staff members comprised a radiation oncologist, two clinical nurse specialists, two head and neck dietitians and two speech-language therapists. Patients reported that overall, their experience of the pre-treatment clinic is positive. Patients value experienced staff, consistency of staff and the messages they provide and a team approach. Patients highlighted the need for different information methods including online/digital information resources and further information regarding the longer-term effects of treatment. Patients valued the purposes of prophylactic exercises and again advocated for supporting resources to be available in a range of online/digital media. Staff members raised the need for flexibility in appointment times and clearer messaging as to the rationale for a pre-treatment SLT appointment, including a rebranding of the SLT service. Seven key areas for improvement were identified jointly by patients and staff members including revision of patient and carer information, development of a patient experience video, information on timelines for recovery, a buddy system for patients before, during and after treatment, flexibility of appointment scheduling, seamless transfer of care between settings and SLT department rebranding. Joint patient and staff task and finish groups were initiated to work on these seven priority areas.
We have worked in partnership with patients to co-design pre-treatment dysphagia services which are accessible and meet the individuals’ needs. Task and finish groups are ongoing with staff and patients are working together to address priority areas for change. This work provides a good example for other centres who may wish to engage in similar activities.
KeywordsHead and neck cancer Pre-treatment Patient experience Quality experience Co-design
We acknowledge the support and infrastructure of The Royal Marsden/Institute of Cancer Research NIHR Biomedical Research Centre. We also acknowledge the support of RM Partners Accountable Cancer Network and The Point of Care Foundation who provided funding and training support in EBCD to GB and JR. We would also like to thank Jamie Crookston of Polka Dot Post who generously gave his time and expertise to edit and produce the patient film. We would also like to acknowledge the kind support of Professor Glenn Robert, King’s College London, who critically reviewed earlier versions of the manuscript. Finally, we would like to thank the patients and staff for their ongoing contributions to this project at the Royal Marsden NHS Foundation Trust and for making this work possible.
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflict of interest.
- 8.Mehanna H, Jones TM, Gregoire V, Ang KK (2010) Oropharyngeal carcinoma related to human papillomavirus. BMJ: Br Med J (Online) 340Google Scholar
- 9.National Comprehensive Cancer Network (NCCN) (2018) Guidelines for treatment of head and neck cancer Available at https://www.nccn.org/store/login/login.aspx?ReturnURL=https://www.nccn.org/professionals/physician_gls/pdf/head-and-neck.pdf Accessed: 19.1.19
- 10.Nice (2016) Cancer of the upper aerodigestive tract: assessment and management in people aged 16 and over. Available at https://www.nice.org.uk/guidance/ng36 Accessed 5.1.19
- 14.Paleri V, Patterson J, Rousseau N, Moloney E, Craig D, Tzelis D, Wilkinson N, Franks J, Hynes AM, Heaven B, Hamilton D (2018) Gastrostomy versus nasogastric tube feeding for chemoradiation patients with head and neck cancer: the TUBE pilot RCT. Health Technol Assess 22(16):1–144CrossRefGoogle Scholar
- 16.Point of Care Foundation (2018) EBCD experience based co-design toolkit available at: https://www.pointofcarefoundation.org.uk/resource/experience-based-co-design-ebcd-toolkit/ Accessed 4.1.2019
- 19.Schache, A.G., Powell, N.G., Cuschieri, K.S., Robinson, M., Leary, S., Mehanna, H., Rapozo, D., Long, A., Cubie, H., Junor, E., and Monaghan, H., 2016. HPV-related oropharyngeal cancer in the United Kingdom: an evolution in understanding of disease etiology. Cancer Res canres-0633Google Scholar
- 20.Tsianakas V, Robert G, Richardson A, Verity R, Oakley C, Murrells T, Flynn M, Ream E (2015) Enhancing the experience of carers in the chemotherapy outpatient setting: an exploratory randomised controlled trial to test impact, acceptability and feasibility of a complex intervention co-designed by carers and staff. Support Care Cancer 23(10):3069–3080CrossRefGoogle Scholar