Men don't talk about their health is a familiar trope. Evidence suggests that in the United States (US) and in the United Kingdom (UK) this is indeed the case. A survey of five hundred men in the US over the age of eighteen reported only 7% discussing their health with their peers [1]. Only 42% of men surveyed were prepared to consult a health care professional over a worrying symptom

Ahmed, Nisar

Ahmedzai, Sam

Appleton, Rebecca

Dale, Jeremy

Loew, Joelle

Nanton, Veronica

Warwick Research Archives Portal Repository

     warwick.ac.uk/lib-publications      Original citation: Nanton, Veronica, Appleton, Rebecca, Loew, Joelle, Ahmed, Nisar, Ahmedzai, Sam and Dale, Jeremy (2018) Men don't talk about their health, but will they CHAT? The potential of online holistic needs assessment in prostate cancer. BJU International, 121 . pp. 494-496. doi:10.1111/bju.14114   Permanent WRAP URL: http://wrap.warwick.ac.uk/97343                          Copyright and reuse: The Warwick Research Archive Portal (WRAP) makes this work by researchers of the University of Warwick available open access under the following conditions.  Copyright © and all moral rights to the version of the paper presented here belong to the individual author(s) and/or other copyright owners.  To the extent reasonable and practicable the material made available in WRAP has been checked for eligibility before being made available.  Copies of full items can be used for personal research or study, educational, or not-for profit purposes without prior permission or charge.  Provided that the authors, title and full bibliographic details are credited, a hyperlink and/or URL is given for the original metadata page and the content is not changed in any way.  Publisher’s statement: This is the peer reviewed version of the following article: Nanton, V. , Appleton, R. , Loew, J. , Ahmed, N. , Ahmedzai, S. and Dale, J. (2018), Men don't talk about their health, but will they CHAT? The potential of online holistic needs assessment in prostate cancer. BJU Int, 121: 494-496. doi:10.1111/bju.14114, which has been published in final form at https://doi.org/10.1111/bju.14114 . This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving.  A note on versions: The version presented here may differ from the published version or, version of record, if you wish to cite this item you are advised to consult the publisher’s version.  Please see the ‘permanent WRAP url’ above for details on accessing the published version and note that access may require a subscription.  For more information, please contact the WRAP Team at: wrap@warwick.ac.uk  Accepted ArticleThis article has been accepted for publication and undergone full peer review but has not been through the copyediting, typesetting, pagination and proofreading process, which may lead to differences between this version and the Version of Record. Please cite this article as doi: 10.1111/bju.14114 This article is protected by copyright. All rights reserved. DR. VERONICA  NANTON (Orcid ID : 0000-0002-9553-822X)  Article type      : Comment  Men don’t talk about their health, but will they CHAT?   The potential of online holistic needs assessment in prostate cancer.  Veronica Nanton1; Rebecca Appleton1; Joelle Loew1;                                                                                              Nisar Ahmed2; Sam Ahmedzai2; Jeremy Dale1 1University of Warwick,2 University of Sheffield  Dr Veronica Nanton Senior Research Fellow Warwick Medical School University of Warwick Coventry CV4 7AL Tel: 02476 574025 Email: V.Nanton@warwick.ac.uk  Men don’t talk about their health is a familiar trope. Evidence suggests that in the United States (US) and in the United Kingdom (UK) this is indeed the case. A survey of five hundred men in the US over the age of eighteen reported only 7% discussing their health with their peers [1]. Only 42% of men surveyed were prepared to consult a health care professional over a worrying symptom [1]. A UK based study has shown a marked gender disparity in General Practice consultation rates in all age groups up to the age of 75 [2]. Support group membership appears similarly gendered. Women in the USA and in the UK have been found   to outnumber men in cancer support groups by 3 to 1 [3]. Urological problems carry a particular stigma as a well-known UK television GP has commented, ‘Men feel embarrassed to talk about their health and if it's anything below the waist, forget it’ [4]. At diagnosis and in follow-up or monitoring of prostate cancer, men may be reluctant to express their concerns for a variety of reasons including reticence and a wish to avoid ‘wasting the doctor’s time’. However, the persistence of physical problems regardless of treatment regime and the associated long-term psychosexual and psychological consequences are evident. While the importance of outcomes in addition to those of survival and recurrence is accepted, research documenting the scale of unmet needs and elucidating their impact on quality of life continues to proliferate [5]. Though men may be less proactive in help-seeking than women,  in the UK pressures Accepted ArticleThis article is protected by copyright. All rights reserved. on resources, limited consultation time and changing prostate cancer care pathways may limit the opportunity for face to face discussion of  concerns. In an earlier Comment we described the potential of an online assessment for the identification of prostate cancer patients’ information needs and other concerns to their health care teams [6]. The last 5 years have seen a rapid escalation and expansion of access to digital technology in the general United Kingdom population. Men with prostate cancer are known to access the internet for information and advice in the United Kingdom usage is increasing among patients from lower socioeconomic groups in the [7,8]. Online support groups are gaining popularity suggesting that men may find the comparative anonymity of online communication more acceptable.  We previously described a potential extension of our needs assessment system to include a wider range of concerns, and suggested that such a system might find a place within the new models of care and follow up recently introduced in the UK in response to demands on resources and NICE guidelines [9].  A three-year collaboration involving patients, clinicians, academics and an IT provider has since enabled us to develop a prostate specific online holistic needs assessment system     (CHAT-P). While Holistic Needs Assessment (HNA) has been identified by the National Cancer Survivorship Initiative as an integral element in cancer follow up care, paper-based HNAs have had limited uptake and evidence of positive impact is lacking. Digital systems have been piloted; however, their content is generic.  CHAT-P (Composite Holistic Assessment Tool-Prostate) is the first prostate-specific HNA developed for an online platform. Additionally the system provides links to reliable sources of advice and support in response to the selection of certain items, in order to facilitate self-management. Links are primarily to the Prostate Cancer UK website which provides information on all aspects of prostate cancer in a variety of formats as well as telephone access to a specialist nurse. A digital design offers a number of advantages over paper; it allows the HNA to be adaptive, enabling men to choose items from a broad menu of domains that are relevant to them and to disregard those that are not.  As such, CHAT-P encompasses a wide range of concerns that may arise as a result of prostate cancer at different stages along the care pathway or as a consequence of particular treatment modalities. Its output includes a summary of needs identified and a partially-completed care plan to be finalised and agreed by the patient and a member of his specialist team or a primary care health practitioner depending on the particular patient pathway. Table 1 summarises these benefits.  CHAT-P has been developed as an iterative process with users playing an active role in all aspects from item selection to question format and design. Qualitative investigation of men’s response to the system has taken place with 22 men post curative surgery, men with metastatic disease and men on active surveillance recruited from urology clinics in the West and North Midlands and South Yorkshire. The age range of the men was 65-79 years with a median of 72 years. Responses have been positive and even men with limited or no experience of digital technology have been enthusiastic. A number of advantages were identified, Accepted ArticleThis article is protected by copyright. All rights reserved. B010: ‘I would like this just to be able to quickly get the information that I want.  At the moment I sit on the computer and wade through the internet and pick out bits and pieces, but it just brings it all into one place’. D004: Well obviously doctors have only got a certain length of time and you can only ask them so much.  And obviously, you know, you come away and think, oh I wished I’d asked him that.  So something, a tool like that is handy because you could go into it and find out more, the things you’ve forgot to ask them, and obviously the things you haven't got time to ask.  So yes it would be a useful tool.   B009: I think more than anything it's just reassurance that some of the things that you've experienced are normal, whereas you worry that they're not normal when you're experiencing them.   CHAT-P is now being trialled as the basis of an intervention in a primary care based feasibility study [8]. The study will report in 2018. Early indications are that men are using the system to identify a range of concerns with psychological and psychosocial issues particularly prominent. Mental health too is a topic that men are reluctant to discuss. Men with prostate cancer suffer an increased risk for mental health problems over men in the general population and the identification, treatment and management of anxiety and depression has been recommended as a key clinical outcome [10]. CHAT-P may enable men to overcome the barriers to disclosure of emotional and psychological issues as well as helping them identify and articulate their problems. Men may be enthusiastic in their response to an online system, and using digital technology in assessment offers a means of reducing patient burden. However, identification of needs is only a first step. There must also be a willingness to adopt and adapt to new technology among health care providers. Implementation science can provide useful insights as to how this may be achieved. In addition to recognition by hard-pressed clinical teams of the importance of addressing men’s holistic concerns, confidence that this is achievable is required. To this end good communication within and beyond settings, knowledge of resources and points of referral are critical.  If CHAT-P encourages men to talk, it is equally important to ensure that those best placed to help will listen and respond.     Ethical Approval Ethical approval for the study was granted by Yorkshire and Humberside Research Ethics Committee on 15th February 2014 Reference 15/YH/0021 Acknowledgements We would like to thank Dr Nick James, Mr Prashant Patel, Mr Mike Henley and their teams for their help with this study and the patients who took part.   Accepted ArticleThis article is protected by copyright. All rights reserved. We are grateful to Chameleon Information Management Services (CIMS) for developing the CHAT-P system and the IT department at University Hospital Birmingham for hosting the CHAT-P site and Dr Radha Muthuswamy Prostate Cancer UK IT consultant for her continuing support.  Conflicts of Interest None declared  Funder Prostate Cancer UK/ Movember  References 1. Cleveland Clinic. Cleveland Clinic MENtion it Survey Results [Internet]. Cleveland, Ohio; 2016 p. 1-19. Available from: Available from: https://newsroom.clevelandclinic.org/wp-content/uploads/sites/4/2016/08/CC-Mens-Health-Survey-Media-Deck-7-11-16.pdf  2. Wang Y, Hunt K, Nazareth I, Freemantle N, Petersen I. Do men consult less than women? An analysis of routinely collected UK general practice data. BMJ Open 2013;3(8). doi: 10.1136/bmjopen-2013-003320 3.Weber BA, Roberts BL, McDougall GJ. Exploring the Efficacy of Support Groups for Men with Prostate Cancer. Geriatric nursing 2000;21(5):250-253 4. Barns S. Dr Hilary Jones: 'Men need to be encouraged to talk about their health' [Internet]. Express.co.uk. 2014 [cited 12 September 2017]. Available from: http://www.express.co.uk/life-style/health/523976/Dr-Hilary-Jones-health-advice 5. King A, Evans M, Moore TH. Prostate cancer and supportive care: a systematic review and qualitative synthesis of men's experiences and unmet needs Eur J Cancer Care 2015;24(5):618-34 doi: 10.1111/ecc.12286 6. Nanton V, Dale J. New models of follow‐up in prostate cancer: a role for information technology? BJU Int. 2012 1;110(9):1224-6. PMID:23043529 7. Rising CJ, Bol N, Kreps GL. Age-Related Use and Perceptions of eHealth in Men With Prostate Cancer: A Web-Based Survey JMIR Cancer 2015;1(1):e6DOI: 10.2196/cancer.4178 PMID: 28410165 8. Dutton W, Blank G, Groselj D. Cultures of the Internet: The Internet in Britain [Internet]. Oxford: OxIS; 2013 p. 1-64. Available from: http://oxis.oii.ox.ac.uk/wp-content/uploads/2014/11/OxIS-2013.pdf Accepted ArticleThis article is protected by copyright. All rights reserved. 9. Nanton V, Appleton R, Dale J et al. Integrated care in prostate cancer (ICARE-P): nonrandomized controlled feasibility study of online holistic needs assessment, linking the patient and the health care team. JMIR Res Protoc. 2017;6(7). PMID: 28754653 10. Watts S, Leydon G, Birch B et al. Depression and anxiety in prostate cancer: a systematic review and meta-analysis of prevalence rates. BMJ Open 2014 1;4(3):e003901. PMID: 24625637     Table 1:           Benefits of a prostate specific online Holistic Needs Assessment system                The HNA is accessed through a secure login system and can be completed at home  Responses are saved automatically allowing completion in stages if preferred  Men chose relevant topics from a range of domains listed on an initial screen  Branching structure allows identification of specific concerns within broad domains  Mandatory questions within physical and psychological sections allow identification of ‘red flag symptoms.’  Positive response triggers an alert to contact a health professional  System contains links to reliable sources of information, advice and support to facilitate  patient self-management  Generates a summary document and semi auto-completed care plan to be completed with a health care professional  The output can be shared electronically or through printable PDF between the patient, his specialist team and primary care   

Men don't talk about their health, but will they CHAT? The potential of online holistic needs assessment in prostate cancer

Veronica Nanton

Rebecca Appleton

Joelle Loew

Nisar Ahmed

Sam Ahmedzai

Jeremy Dale

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BJU International

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http://wrap.warwick.ac.uk/97343/8/WRAP-potential-online-holistic-needs-assessment-prostate-cancer-Dale-2017.pdf

Men don't talk about their health, but will they CHAT? The potential of online holistic needs assessment in prostate cancer

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