Education to Improve Cancer Care for LGBTQ+ Patients in the UK
2020; Elsevier BV; Volume: 33; Issue: 4 Linguagem: Inglês
10.1016/j.clon.2020.12.012
ISSN1433-2981
AutoresAlison Berner, Rachael Webster, D.J. Hughes, Hannah Tharmalingam, D.J. Saunders,
Tópico(s)Patient-Provider Communication in Healthcare
ResumoIn order to adequately treat and care for patients in a holistic manner, we need to understand what influences outcome beyond disease biology. The differential impact of COVID-19 on Black and ethnic minority communities has highlighted this again, but other minority groups experience health inequalities and have unique healthcare needs. Members of the LGBTQ+ (lesbian, gay, bisexual, queer or questioning) community are another such group and two recent articles have highlighted the importance of education for UK oncologists and other cancer care professionals in helping to achieve the best possible outcomes for these patients [[1]Webster R. Drury-Smith H. How can we meet the support needs of LGBT cancer patients in oncology? A systematic review.Radiography. 2020; https://doi.org/10.1016/j.radi.2020.07.009https://www.radiographyonline.com/article/S1078-8174(20)30133-4/pdfAbstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar,[2]Berner A.M. Hughes D.J. Tharmalingam H. Baker T. Heyworth B. Banerjee S. et al.An evaluation of self-perceived knowledge, attitudes and behaviours of UK oncologists about LGBTQ+ patients with cancer.ESMO Open. 2020; 5e000906https://doi.org/10.1136/esmoopen-2020-000906Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar]. It is estimated that 3% of adults in the UK identify as lesbian, gay or bisexual (LGB), a sexual orientation other than heterosexual, and about 0.5% of adults identify as transgender, with up to 4.5% identifying as gender diverse [[2]Berner A.M. Hughes D.J. Tharmalingam H. Baker T. Heyworth B. Banerjee S. et al.An evaluation of self-perceived knowledge, attitudes and behaviours of UK oncologists about LGBTQ+ patients with cancer.ESMO Open. 2020; 5e000906https://doi.org/10.1136/esmoopen-2020-000906Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar]. Disclosure rates for LGBTQ+ identities are increasing with successive generations and as cancer is mostly a disease of aging, increasing numbers of this population will be treated within oncology services. The unique needs of this population are wide ranging, and include behavioural trends affecting cancer incidence, such as higher rates of smoking and alcohol use, reduced screening uptake and inequalities in provision, and specific concerns around psychosexual function after treatment, fertility and end-of-life care. Highly cis-heteronormative spaces and assumptions by healthcare providers may reduce disclosure, meaning that these healthcare needs are frequently unmet [[1]Webster R. Drury-Smith H. How can we meet the support needs of LGBT cancer patients in oncology? A systematic review.Radiography. 2020; https://doi.org/10.1016/j.radi.2020.07.009https://www.radiographyonline.com/article/S1078-8174(20)30133-4/pdfAbstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar]. Trans people may require integration of their gender-affirming care with their anti-cancer treatment or risk-reduction strategy in the case of cancer predisposition syndromes. In their systematic review, Webster and Drury-Smith [[1]Webster R. Drury-Smith H. How can we meet the support needs of LGBT cancer patients in oncology? A systematic review.Radiography. 2020; https://doi.org/10.1016/j.radi.2020.07.009https://www.radiographyonline.com/article/S1078-8174(20)30133-4/pdfAbstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar] found ‘improvement of healthcare professionals’ knowledge and education’ as one of its five key themes in improving the support of LGBTQ+ patients in oncology. A UK-wide study highlighted the need and desire among UK oncologists for further education on this topic [[2]Berner A.M. Hughes D.J. Tharmalingam H. Baker T. Heyworth B. Banerjee S. et al.An evaluation of self-perceived knowledge, attitudes and behaviours of UK oncologists about LGBTQ+ patients with cancer.ESMO Open. 2020; 5e000906https://doi.org/10.1136/esmoopen-2020-000906Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar]. Over 10% of UK consultant and trainee oncologists (medical and clinical) participated. The study found low levels of knowledge around specific cancer risk factors for LGBTQ+ patients and a lack of awareness of the impact of sexual orientation and gender identity on a patient's cancer care needs. As a result there were low levels of enquiry of a patient's sexual orientation, gender identity and preferred pronouns. However, three quarters of participants expressed a desire for further education on this topic and two-thirds thought it should be mandatory in both the undergraduate and postgraduate curriculum. These findings are consistent with similar studies that have been conducted in the USA. So what is being done to address this educational need? Although, as yet there is no consistent integration into this within UK curricula, some medical schools have been more proactive. The charity LGBT Foundation has worked to develop teaching materials with Manchester Medical school and has LGBTQ+ patients providing teaching sessions. UCL Medical School has introduced a half-day teaching session for final year students that explores LGBTQ+ health within various specialties and involves a patient visitor and a chance to work through patient scenarios. Post-teaching feedback found increased student confidence in the clinical assessment of LGBTQ+ patients. There has also been work to address this area at the postgraduate level. Following the recent study findings, the Royal College of Radiologists is looking to improve educational resources for oncologists [[2]Berner A.M. Hughes D.J. Tharmalingam H. Baker T. Heyworth B. Banerjee S. et al.An evaluation of self-perceived knowledge, attitudes and behaviours of UK oncologists about LGBTQ+ patients with cancer.ESMO Open. 2020; 5e000906https://doi.org/10.1136/esmoopen-2020-000906Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar]. Their Clinical Oncology Summer Webinar Series featured a session entitled ‘Oncological considerations for the LGBTQ+ patient’ and they plan to develop new e-learning materials, as well as a link to existing resources [[2]Berner A.M. Hughes D.J. Tharmalingam H. Baker T. Heyworth B. Banerjee S. et al.An evaluation of self-perceived knowledge, attitudes and behaviours of UK oncologists about LGBTQ+ patients with cancer.ESMO Open. 2020; 5e000906https://doi.org/10.1136/esmoopen-2020-000906Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar,[3]Berner A.M. Saunders D. Oncological considerations for the LGBTQ+ patient. RCR clinical oncology summer school Series. Royal College of Radiologists, 2020https://register.gotowebinar.com/recording/107040064214715651Google Scholar]. For example, the Royal College of General Practitioners' LGBT Health Hub screening module and various content produced for patients and professionals by charity organisations [[4]RCGP. Home LGBT health hub.2019https://elearning.rcgp.org.uk/mod/page/view.php?id=9380Date accessed: May 30, 2020Google Scholar]. Nursing staff play a vital role in the cancer patient journey, and the UK Oncology Nurses Society are also planning to develop their own resource hub and e-learning modules. Marie Curie, in collaboration with Stonewall, have created an e-learning module that funds LGBTQ+ patient care nurses and other staff specialised in end-of-life care. On completion, the individual receives a rainbow pin to help encourage patient disclosure, as they know this person has received training to help understand their needs. With over 50% of cancer patients receiving radiotherapy, radiographers are uniquely placed in the cancer pathway to assess LGBTQ+ patient needs. Although not included in radiography undergraduate training, a new optional module exploring LGBTQ+ cancer care is due to be introduced at the University of Liverpool as part of the MSc in radiotherapy and will also be available on other postgraduate courses at the University of Liverpool's School of Health Sciences. Other radiographer-led initiatives include consensus guidance on recommended intervals for gay men to resume sex after prostate cancer treatment, and enquiring about pregnancy in trans and non-binary individuals [[5]Ralph S. Richardson C. EP-2206 How long should men abstain from receiving anal sex following treatments for prostate cancer?.Radiother Oncol. 2019; 133: S1216https://doi.org/10.1016/s0167-8140(19)32626-xAbstract Full Text PDF Google Scholar]. The latter follows recommendations by the Care Quality Commission (CQC) and changes to Ionising Radiation (Medical Exposure) Regulations (IR (ME)R) meaning all individuals aged 12–55 years must have pregnancy status checked. This is pivotal in protecting trans patients from serious incidents. Cambridge University Hospitals NHS Foundation Trust Radiotherapy Cancer Services has already changed pregnancy enquiries to gender neutral consent forms. The use of a Sex, Identity, Gender, Expression (SIGE) form before radiation exposures has been supported by the Society of Radiographers to discreetly ask patients questions regarding reproductive organs and gender [[6]Sanders V. Pedersen S. Improving communication with the gender diverse community in diagnostic imaging departments.Radiography. 2018; 24 (S3–6)https://doi.org/10.1016/j.radi.2018.04.011Abstract Full Text Full Text PDF PubMed Scopus (8) Google Scholar]. However, it is not enough to simply mandate more education in this field; one must consider how we educate. A recent paper by Alpert and colleagues [[7]Alpert A. Kamen C. Schabath M.B. Hamel L. Seay J. Quinn G.P. What exactly are we measuring? Evaluating sexual and gender minority cultural humility training for oncology care clinicians.J Clin Oncol. 2020; 38: 2605-2609https://doi.org/10.1200/JCO.19.03300Crossref PubMed Scopus (4) Google Scholar] suggests that developing cultural competency alone is insufficient, one must train oncology professions in ‘cultural humility’, which ‘Espouses a focus on self-reflection and the goal of being a lifelong learner to address health disparities and inequality’. Courses should therefore be co-developed with patients, e-learning should involve simulated consultations and face-to-face modules should include sessions with patients. However, professionals must also take ownership of their own learning and self-reflect on own practices. Although training in cultural humility has been shown to improve clinicians' knowledge of LGBTQ+ health needs, this has not yet been shown to translate to improved patient experience and outcome [[8]Feagin J. Bennefield Z. Systemic racism and U.S. health care.Soc Sci Med. 2014; 103: 7-14https://doi.org/10.1016/j.socscimed.2013.09.006Crossref PubMed Scopus (291) Google Scholar]. This is perhaps because patient experience encompasses more than just the clinical interaction. A patient group that continues to face stigma and discrimination needs to encounter a healthcare environment that is inclusive [[1]Webster R. Drury-Smith H. How can we meet the support needs of LGBT cancer patients in oncology? A systematic review.Radiography. 2020; https://doi.org/10.1016/j.radi.2020.07.009https://www.radiographyonline.com/article/S1078-8174(20)30133-4/pdfAbstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar]. This means training non-clinical staff in appropriate communication skills and cultural humility, and creating spaces with imagery that reflects a diverse population. This, like the aforementioned wearing of pins and lanyards with flags of the LGBTQ+ community, can encourage disclosure and facilitate better healthcare interactions [[9]Fish J. Williamson I. Brown J. Disclosure in lesbian, gay and bisexual cancer care: towards a salutogenic healthcare environment.BMC Cancer. 2019; 19: 678https://doi.org/10.1186/s12885-019-5895-7Crossref PubMed Scopus (8) Google Scholar]. High-quality education is built on high-quality research, another theme identified by Webster and Drury-Smith [[1]Webster R. Drury-Smith H. How can we meet the support needs of LGBT cancer patients in oncology? A systematic review.Radiography. 2020; https://doi.org/10.1016/j.radi.2020.07.009https://www.radiographyonline.com/article/S1078-8174(20)30133-4/pdfAbstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar] in improving LGBTQ+ cancer care. This means better inclusion of this population in all research and increasing the number of co-produced studies into the specific healthcare inequalities of LGBTQ+ patients as seen by patients themselves, and as identified through publicly available data. Given previous exploitation of the LGBTQ+ community, patients may be reluctant to be involved in studies, and so may require a more detailed discussion about the implications. However, more widely accepted is the need for improved sexual orientation and trans status monitoring in healthcare data. This was the third theme identified as critical to improving cancer care for LGBTQ+ patients and that one may argue underpins all others. Lack of monitoring means we are unable to study incidence or mortality in LGBTQ+ cancer patients in the UK [[1]Webster R. Drury-Smith H. How can we meet the support needs of LGBT cancer patients in oncology? A systematic review.Radiography. 2020; https://doi.org/10.1016/j.radi.2020.07.009https://www.radiographyonline.com/article/S1078-8174(20)30133-4/pdfAbstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar]. Conversely, lack of education and knowledge of healthcare professionals about LGBTQ+ health inequalities may act as a barrier to monitoring, and they may in fact be more anxious about monitoring than the LGBTQ+ community themselves. Although sexual orientation was only added to the UK National Cancer Registration and Analysis Service (NCRAS) data set in 2018, it remains an optional field with many healthcare professionals unaware of its inclusion. However, a modified question set has been developed and is being reviewed prior to implementation by Public Health England and the Health and Social Care Information Centre [[10]LGBT FoundationMonitoring LGBT Foundation.https://lgbt.foundation/monitoringDate: 2020Date accessed: September 29, 2020Google Scholar]. Information technology infrastructure can be a major barrier in recording this information effectively and safely. However, radiotherapy management software now has sexual orientation and gender identity as demographic fields for patients. In 2019, the Women and Equalities Committee recommended mandatory monitoring of sexual orientation and gender identity by the end of 2020 and it remains a goal of the National LGBT Action Plan. There is no doubt that the educational offering for all [AQ3]healthcare professionals treating LGBTQ+ cancer patients is set to improve in the coming years, but what can oncology teams do now to better serve this population? Table 1 shows some ‘practice pointers’ for developing a more inclusive oncology service. As a commitment to continuing work in this area the Royal College of Radiologists, Association of Cancer Physicians (ACP) and Royal College of Physicians London are also planning to issue a joint statement on ‘improving cancer care for sexual and gender minorities’.Table 1‘Practice pointers’ for developing a more inclusive oncology service for LGBTQ+ patientsAreaBehaviourExamples of good practiceDirect patient care-Ask a patient's preferred name-Ask a patient's pronouns-Ask open questions about patient support networks-Explain why you are asking questions about sexual orientation, transition or sex assigned at birth-For gender diverse people, ask about gender-affirming procedures only if it is relevant to their current management-Ensure patients are addressed appropriately in appointment letters.‘What name would you like me to use?’‘I need to make notes about our discussion, what pronouns should I use for you?’‘Who are the people in your life that provide you support?’‘Treatments for this cancer can affect sexual function, which may differ depending on the type of sex you have. So today I will ask about your sexual orientation and sexual practices to help provide you with the right information for you.’Healthcare environment-Train non-clinical staff in appropriate terminology-Display posters with diverse imagery and LGBT-specific resources in clinic spaces-Wear the NHS rainbow badge or lanyard-Ensuring gender neutral toilets are available-Encourage participation of LGBTQ+ patients and third sector organisations in service design and deliveryStaff badges that include pronouns with name and professionPosters for LGBTQ+ patient support groups/other inclusive imagery.Having a patient representative attend management meetings and contribute to service initiatives.Improving the healthcare evidence base-Encourage patient participation in research and addressing patient concerns around their data-Encourage institutions to adopt sexual orientation and gender identity monitoring-Encourage sexual orientation and gender identity to be included recorded research studiesSee resources:-Good Practice Guide to Sexual Orientation Monitoring (LGBT Foundation) [[10]LGBT FoundationMonitoring LGBT Foundation.https://lgbt.foundation/monitoringDate: 2020Date accessed: September 29, 2020Google Scholar]-Briefing Sheet: Trans Status Monitoring (LGBT Foundation) [[10]LGBT FoundationMonitoring LGBT Foundation.https://lgbt.foundation/monitoringDate: 2020Date accessed: September 29, 2020Google Scholar]Education-Familiarise yourself with existing charity resources for LGBTQ+ patients-Access existing the LGBTQ+ healthcare educations resources-Attend LGBTQ+ education events run by local organisations, charities and NHS TrustsRCGP LGBT Health Hub [[4]RCGP. Home LGBT health hub.2019https://elearning.rcgp.org.uk/mod/page/view.php?id=9380Date accessed: May 30, 2020Google Scholar]RCR Webinar ‘Oncological considerations for the LGBTQ+ patient’ [[3]Berner A.M. Saunders D. Oncological considerations for the LGBTQ+ patient. RCR clinical oncology summer school Series. Royal College of Radiologists, 2020https://register.gotowebinar.com/recording/107040064214715651Google Scholar] Open table in a new tab It is only by learning collaboratively as an oncology workforce, together with our patients, that we can reduce inequalities and improve outcomes for LGBTQ+ patients. An additional set of references used for the creation article is available in the appendix. A.M. Berner reports personal fees from Pfizer , outside the submitted work; and is lead author on one study featured in the editorial manuscript. D.J. Hughes reports personal fees from Novartis , grants from Nanomab Technology Ltd , outside the submitted work. The authors would like to thank Dr Kate Nambiar for her insightful contribution to the ‘practice pointers’. The following are the Supplementary data to this article: Download .docx (.02 MB) Help with docx files Multimedia component 1
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