Patient advocacy in head and neck cancer: Realities, challenges and the role of the multi-disciplinary team.


Journal

Clinical otolaryngology : official journal of ENT-UK ; official journal of Netherlands Society for Oto-Rhino-Laryngology & Cervico-Facial Surgery
ISSN: 1749-4486
Titre abrégé: Clin Otolaryngol
Pays: England
ID NLM: 101247023

Informations de publication

Date de publication:
07 2020
Historique:
received: 23 12 2019
accepted: 12 01 2020
pubmed: 24 1 2020
medline: 24 8 2021
entrez: 24 1 2020
Statut: ppublish

Résumé

This paper explores the concept of advocacy in head and neck cancer. We define inherent challenges in the development and success of advocacy within this context and offer ways to embed it within clinical practice. We outline what advocacy is, ways in which it may benefit people with head and neck cancer and the engagement required from healthcare professionals to facilitate advocacy to improve outcomes.

Identifiants

pubmed: 31971339
doi: 10.1111/coa.13508
doi:

Types de publication

Editorial Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

437-444

Subventions

Organisme : Department of Health
ID : CDRF-2013-04-020
Pays : United Kingdom

Informations de copyright

© 2020 John Wiley & Sons Ltd.

Références

Giuliani M, McQuestion M, Jones J, et al. Prevalence and nature of survivorship needs in patients with head and neck cancer. Head Neck. 2016;38:1097-1103.
Redmond K. Collaboration with patient advocates: Unleashing a potent force. BJU Int. 2003;91:590-591.
Smith JL, Pollack LA, Rodriguez JL, et al. Assessment of the status of a National Action Plan for Cancer Survivorship in the USA. J Cancer Surviv. 2013;7:425-438.
Mathews-Bradshaw B, Johnson R, Kaplan S, Craddock K, Hayes-Lattin B. The history and accomplishments of the LIVESTRONG Young Adult Alliance. J Adolesc Young Adult Oncol. 2011;1:43-47.
WHO. Cancer Control: Knowledge Into Action: WHO Guide for Effective Programmes. Policy and Advocacy. Module 6. Switzerland: World Health Organization; 2008.
Schear RM, Manasco L, McGoldrick D, et al. International framework for cancer patient advocacy: empowering organizations and patients to create a national call to action on cancer. J Glob Oncol. 2015;1:83-91.
Institute of Medicine I. From cancer patient to cancer survivor: Lost in transition. Washington, DC: The National Academies Press; 2006.
Richards M, Corner J, Maher J. The National Cancer Survivorship Initiative: new and emerging evidence on the ongoing needs of cancer survivors. Br J Cancer. 2011;105:S1-S4.
Australian Government CA. Principles of Cancer Survivorship: A national framework to guide policy, planning and health system responses to cancer survivorship. In. Australia.2017.
Westman B, Kirkpatrick L, Ebrahim F, Henriksson R, Sharp L. Patient-reported experiences on supportive care strategies following the introduction of the first Swedish national cancer strategy and in accordance with the new patient act. Acta Oncol. 2018;57:382-392.
Sharp L, Westman B, Olofsson A, Leppänen A, Henriksson R. Access to supportive care during and after cancer treatment and the impact of socioeconomic factors. Acta Oncol. 2018;57:1303-1310.
Dempsey L, Orr S, Lane S, Scott A. The clinical nurse specialist's role in head and neck cancer care: United Kingdom National Multidisciplinary Guidelines. J Laryngol Otol. 2016;130:S212-S215.
Starmer H, Sanguineti G, Marur S, Gourin CG. Multidisciplinary head and neck cancer clinic and adherence with speech pathology. Laryngoscope. 2011;121:2131-2135.
Light T, Rassi EE, Maggiore RJ, et al. Improving outcomes in veterans with oropharyngeal squamous cell carcinoma through implementation of a multidisciplinary clinic. Head Neck. 2017;39:1106-1112.
Badran KW, Heineman TE, Kuan EC, St John MA. Is multidisciplinary team care for head and neck cancer worth it? Laryngoscope. 2018;128:1257-1258.
Starmer HM, Ayoub N, Byward C, et al. The impact of developing a speech and swallow rehab program: Improving patient satisfaction and multidisciplinary care. Laryngoscope. 2017;127:2578-2581.
Roman BR, Goldenberg D, Givi B, Head ECoA, Society N. AHNS Series-Do you know your guidelines? Guideline recommended follow-up and surveillance of head and neck cancer survivors. Head Neck. 2016;38:168-174.
Wiederholt PA, Connor NP, Hartig GK, Harari PM. Bridging gaps in multidisciplinary head and neck cancer care: nursing coordination and case management. International Journal of Radiation Oncology* Biology*. Physics. 2007;69:S88-S91.
Fricker J. Patient advocacy groups: Empowering patients in their fight against cancer. Mol Oncol. 2007;1:252-254.
Lederman L, Madden D, Battle D, Connolly HK, Smith ML. Patient advocates collaborate to ensure patients are members of their own oncology care teams. J Oncol Pract. 2016;12:980.
Health Foundation. Quality Improvement Made Simple: What Everyone Should Know about Healthcare Quality Improvement: Quick Guide. London: Health Foundation; 2013.
Pattison N, Lee M. Two tribes coming together: patient and public involvement in cancer research. Eur J Cancer Care. 2014;23:1-2.
GilbertD. The Patient Revolution. London: Jessica Kingsley, London; 2020.
Berwick D. The 9 changes needed to make health care more ‘moral’ 'The aim should be to measure only what matters, and mainly for learning'. In; 2016.
Bate P, Robert G. Experience-based design: from redesigning the system around the patient to co-designing services with the patient. BMJ Qual Saf. 2006;15:307-310.
Bate S, Robert G. Towards more user-centric organisational development: lessons from a case study of experience-based design. J Appl Behav Sci. 2007;41-66.
Robert G, Cornwell J, Locock L, Purushotham A, Sturmey G, Gager M. Patients and staff as codesigners of healthcare services. BMJ. 2015;350:g7714.
Steen M, Manschot M, De Koning N. Benefits of co-design in service design projects. Int J Design. 2011;5:53-60.
Clarke D, Jones F, Harris R, Robert G. What outcomes are associated with developing and implementing co-produced interventions in acute healthcare settings? A rapid evidence synthesis. BMJ Open. 2017;7:e014650.
Tsianakas V, Robert G, Maben J, Richardson A, Dale C, Wiseman T. Implementing patient-centred cancer care: using experience-based co-design to improve patient experience in breast and lung cancer services. Support Care Cancer. 2012;20:2639-2647.
Brady GC, Goodrich J, Roe JW. Using experience-based co-design to improve the pre-treatment care pathway for people diagnosed with head and neck cancer. Support Care Cancer. 2019;28:1-7.
Staley K. There is no paradox with PPI in research. J Med Ethics. 2013;39:186-187.
(NIHR) NIfHR. NIHR/INVOLVE what is public involvement in research? 2019.
Elmiyeh B, Dwivedi R, Jallall N, et al. Surgical voice restoration after laryngectomy: An overview. Indian J Cancer. 2010;47:239-247.
Kazi R, Sayed S, Dwivedi RC. Clinical importance of quality of life measures in head and neck cancer. Indian J Cancer. 2010;47:237-238.
Sayed S, Elmiyeh B, Rhys Evans P, et al. Quality of life and outcomes research in head and neck cancer: a review of the state of the discipline and likely future directions. Cancer Treat Rev. 2009;35:397.
Lee JH, Ba D, Liu G, Leslie D, Zacharia BE, Goyal N. Association of head and neck cancer with mental health disorders in a large insurance claims database. JAMA Otolaryngol Head Neck Surg. 2019;145:339-344.
Osazuwa-Peters N, Simpson MC, Zhao L, et al. Suicide risk among cancer survivors: Head and neck versus other cancers. Cancer. 2018;124:4072-4079.
Chen AM, Daly ME, Vazquez E, et al. Depression among long-term survivors of head and neck cancer treated with radiation therapy. JAMA Otolaryngol Head Neck Surg. 2013;139:885-889.
Wu Y-S, Lin P-Y, Chien C-Y, et al. Anxiety and depression in patients with head and neck cancer: 6-month follow-up study. Neuropsychiatr Dis Treat. 2016;12:1029.
Massa ST, Osazuwa-Peters N, Boakye EA, Walker RJ, Ward GM. Comparison of the financial burden of survivors of head and neck cancer with other cancer survivors. JAMA Otolaryngol Head Neck Surg. 2019;145:239-249.
Allicock M, Carr C, Johnson L-S, et al. Implementing a one-on-one peer support program for cancer survivors using a motivational interviewing approach: results and lessons learned. J Cancer Educ. 2014;29:91-98.
Algtewi E, Owens J, Baker SR. Online support groups for head and neck cancer and health-related quality of life. Qual Life Res. 2017;26:2351-2362.
Prochaska JJ, Coughlin SS, Lyons EJ. Social media and mobile technology for cancer prevention and treatment. Am Soc Clin Oncol Educ Book. 2017;37:128-137.
Kowitt SD, Ellis KR, Carlisle V, et al. Peer support opportunities across the cancer care continuum: a systematic scoping review of recent peer-reviewed literature. Support Care Cancer. 2019;27:97-108.
Entwistle VA, Carter SM, Cribb A, McCaffery K. Supporting patient autonomy: the importance of clinician-patient relationships. J Gen Intern Med. 2010;25:741-745.
Rothaus P, Johnson DL, Hanson PG, Lyle FA, Moyer R. Participation and sociometry in autonomous and trainer-led patient groups. J Couns Psychol. 1966;13:68.
Nund RL, Ward EC, Scarinci NA, Cartmill B, Kuipers P, Porceddu SV. Survivors' experiences of dysphagia-related services following head and neck cancer: Implications for clinical practice. Int J Lang Commun Disord. 2014;49:354-363.
Beauchamp TL, Childress JF. Principles of Biomedical Ethics. USA: Oxford University Press; 2001.
Scherer A, Alt-Epping B, Nauck F, Marx G. Team members perspectives on conflicts in clinical ethics committees. Nurs Ethics. 2019;26(7-8):2098-2112.
Calman K, Hine D. A policy framework for commissioning cancer services. A report by the Expert Advisory Group on Cancer to the Chief Medical Officers of England and Wales. London: Department of Health 1995:34.
National Institute for Clinical Excellence (Great Britain). Improving outcomes in head and neck cancers : the manual. London: National Institute for Clinical Excellence; 2004.
Francis R. Report of the Mid Staffordshire NHS Foundation Trust public inquiry: executive summary: The Stationery Office. 2013.
Soukup T, Lamb BW, Arora S, Darzi A, Sevdalis N, Green JS. Successful strategies in implementing a multidisciplinary team working in the care of patients with cancer: an overview and synthesis of the available literature. J Multidiscip Healthc. 2018;11:49.
Hill E. Smart patients. Lancet Oncol. 2014;15:140-141.
Patkar V, Acosta D, Davidson T, Jones A, Fox J, Keshtgar M. Cancer multidisciplinary team meetings: evidence, challenges, and the role of clinical decision support technology. Int J Breast Cancer. 2011;2011:1-7.
Transforming health care through partnerships. (Accessed at https://www.ipfcc.org/about/pfcc.html).

Auteurs

Camilla Dawson (C)

Queen Elizabeth Hospital Birmingham, Birmingham, UK.

Justin Roe (J)

Department of Speech & Language Therapy, The Royal Marsden NHS Foundation Trust, London, UK.
Department of Surgery and Cancer, Imperial College Healthcare NHS Trust, London, UK.
National Centre for Airway Reconstruction, Imperial College Healthcare Trust, London, UK.

Heather Starmer (H)

Department of Otolaryngology and Head and Neck Cancer, Speech and Swallowing Rehabilitation, Stanford Cancer Center, CA, USA.

Grainne Brady (G)

Department of Speech and Language Therapy, The Royal Marsden NHS Foundation Trust, London, UK.

Rebecca Nund (R)

School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Qld., Australia.

Margaret Coffey (M)

Imperial College Healthcare NHS Trust, London, UK.

Roganie Govender (R)

University College London Hospital NHS Foundation Trust, London, UK.

Jo M Patterson (JM)

University of Liverpool, Liverpool, UK.

Paul Nankivell (P)

Queen Elizabeth Hospital Birmingham, Birmingham, UK.

Annie Topping (A)

University of Birmingham, Birmingham, UK.

Neil Sharma (N)

Queen Elizabeth Hospital Birmingham, Birmingham, UK.

Sat Parmar (S)

Queen Elizabeth Hospital Birmingham, Birmingham, UK.

Chris Elkington (C)

Head and Neck Cancer U.K., Birmingham, UK.

Malcolm Merrit (M)

Head and Neck Cancer U.K., Birmingham, UK.

David Stanbury (D)

Head and Neck Cancer U.K., Birmingham, UK.

Paul Pracy (P)

Queen Elizabeth Hospital Birmingham, Birmingham, UK.

Articles similaires

[Redispensing of expensive oral anticancer medicines: a practical application].

Lisanne N van Merendonk, Kübra Akgöl, Bastiaan Nuijen
1.00
Humans Antineoplastic Agents Administration, Oral Drug Costs Counterfeit Drugs

Smoking Cessation and Incident Cardiovascular Disease.

Jun Hwan Cho, Seung Yong Shin, Hoseob Kim et al.
1.00
Humans Male Smoking Cessation Cardiovascular Diseases Female
Humans United States Aged Cross-Sectional Studies Medicare Part C
1.00
Humans Yoga Low Back Pain Female Male

Classifications MeSH