The Breast 23 (2014) 799e806
Contents lists available at ScienceDirect
The Breast journal homepage: www.elsevier.com/brst
Original article
The Internet: What are our patients exposed to when considering breast reconstruction following mastectomy? Amy Light a, *, Colin Munro a, William Breakey b, Adam Critchley c a
South Tyneside District General Hospital, Harton Lane, South Shields NE34 0PL, UK Plastic Surgery Department, Royal Victoria Infirmary, Queen Victoria Road, Newcastle NE1 4LP, UK c Breast Surgery Department, Royal Victoria Infirmary, Queen Victoria Road, Newcastle NE1 4LP, UK b
a r t i c l e i n f o
a b s t r a c t
Article history: Received 26 March 2014 Received in revised form 18 June 2014 Accepted 12 August 2014 Available online 2 September 2014
Background: The exponential increase in internet use has transformed the healthcare provider-patient relationship. There is a need to guide patients. This study analyses the information available, clinicians approach and patients' experiences. Methods: An internet search, “breast reconstruction after mastectomy” was performed on Google and Bing search engines. The first 100 sites on each search were analysed. Target audience, provider and readability were assessed. Modified Health on the Net criterion was used to assess quality. Additionally clinicians and patients were surveyed about their experiences. Results: Private companies dominated, accounting for 67% of sites, the majority advertised private healthcare groups. Of “information pages”, 16% were government sites and 9% were from professional bodies but 28% were private. Blogs had high rates of surreptitious advertising. Patients wanted guidance on which sites to use. Endorsed sites were commonly recommended and used despite only accounting for 13 of the 100 sites. Conclusion: The internet is a powerful tool for disseminating information. There is a wide variety of information presented on breast reconstruction following mastectomy from a range of providers with different interests. Patients should not only be provided with a list of internet resources but also counselled on the types of information they may encounter. © 2014 Elsevier Ltd. All rights reserved.
Keywords: Breast reconstruction Decision making Information provision Internet
Introduction The exponential increase in access and use of the Internet has led to a dramatic transformation in the relationship between care providers and their patients. Increasingly, patients are seeking information for themselves [1,2]. It is not infrequent that patients present information to clinicians that they themselves have discovered on the internet. A recent study estimated that approximately 40% of patients will consult the internet before undergoing surgery [3]. Of these, over one in four are confused or scared by the information they find [4]. The use of this source and access to
* Corresponding author. Permanent address: 59 Elsdon Road, Gosforth, Newcastle NE3 1HY, UK. E-mail addresses: [email protected] (A. Light), [email protected] (C. Munro), [email protected] (W. Breakey), [email protected] (A. Critchley). http://dx.doi.org/10.1016/j.breast.2014.08.005 0960-9776/© 2014 Elsevier Ltd. All rights reserved.
patients is increasingly utilised for commercial gains and receiving accurate information via the internet is increasingly problematic [5]. Clearly, there is a need to guide patients through this useful but potentially misleading source of information. In the United Kingdom, the Association of Breast Surgeons (ABS) and the British Association of Plastic, Reconstructive and Aesthetic Surgeons (BAPRAS) have published clear guidelines for immediate breast reconstruction following mastectomy [6]. Within this it is clearly stated that “Patients should have easy access to current, reliable, balanced information relating to suitable surgical options”. They provide a list of recommended online resources. In the USA, the National Cancer Institute provides an online page of information on breast reconstruction in the context of mastectomy [7]. In Australia, the Breast Cancer Network Australia provides a list of resources which link to patient stories [8]. There are no direct links in USA or Australia to recommended resources that offer greater detail on the procedures available to patients.
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Yet, a survey of 106 patients undergoing breast reconstruction revealed that 68% of the patients used the internet for information related to breast reconstruction. The categories searched were procedure (39%), risks or outcome (35%), surgeon (13%), pictures (11%), and hospital (4%). It was perceived to be helpful, easy to understand and trustworthy in 72%, 69% and 63% of patients respectively. In over half, the information sourced on the Internet influenced their choice of surgery [9]. A survey into patients' choice for microsurgical versus non-micro surgical breast reconstruction found the Internet to be a significant influencing factor on patient choice [10]. There are no studies specifically into what information is available on the Internet to patients undergoing breast reconstruction following mastectomy for breast cancer. There are also no studies that assess how patients choose Internet sites when researching an operation. It is paramount that, as clinicians caring for patients who are considering breast reconstruction in difficult circumstances, we are insightful of what information they may be retrieving. Furthermore, we should use this insight to enable us to provide guidance and improve the quality and accuracy of information patients are receiving. This study evaluates the type and accuracy of information, providers of information and target audience of internet sites that are retrieved when undertaking the most common searches by patients. Additionally, we analyse how clinicians are involving and guiding patients in their gathering of information and how much guidance patients feel they receive or would like to receive on where to look for information. We aim to provide the information necessary to aid clinicians in guiding patients to accurate sources of information when deciding on breast reconstruction following mastectomy. Methods Internet searches An Internet search was performed on the two top Internet search engines (Google and Bing). Medical reference search engines were not assessed as this study was focused on assessing the information accessible on the Internet to the general public. The principal search term “breast reconstruction after mastectomy” was chosen using the commercial programme ‘wordtracker’ (Wordtracker, London, UK, www.wordtracker.com). The first 100 websites analysed in each search engine. No sites were excluded and duplicate results were counted. Cookies and other preference settings were not disabled on the browser. Information was retrieved on type, readability and accuracy of information, level of evidence, commercial interest and advertisement, provider of information and target audience of Internet sites. Type of information was categorised as textbook, patient video, procedural video, procedural description, scientific publication, information for scientific meetings, commercial advertising, news headlines or magazines articles, blogs, or other. This was further classified as objective, subjective or mixed. For information targeted at general public, readability was assessed as easy, moderate, or difficult. Providers of information were categorised as NHS or government bodies, institutions or individual hospitals, profit making companies, individual surgeons working in the private sector, nonprofit making companies, magazines and blogs. Target audience was categorised as patients, healthcare professionals, other professionals (e.g. lawyers) and healthcare industry. A modified HON (Health on the Net) criterion using 14 questions was used to assess the quality of sites [11]. This included
accountability and appropriateness of who was providing information, how well evidenced information was, information of any funding and advertising and whether this was clear and unambiguous. To check for concordance an additional search term “breast reconstruction cancer”, identified using ‘wordtracker’, was used and compared against the principal search term. The first 50 pages were assessed and compared against the principal search results. Chi squared analysis was used to check for any statistically significant differences in types of Internet sites returned on each search term. Patient survey Patients were recruited within the Tyne and Wear and Northumbria NHS Trusts, UK from June1ste14th 2014. All patients attending clinic who were considering a breast reconstruction in the context on oncological mastectomy were invited to participate. In addition, patients were identified through a breast reconstruction focus group. All participants were counselled and provided written consent to participate in a 10-point questionnaire (see Appendix A). All data was anonymous and local approval was granted. Data collected included patient demographics, usual Internet usage and access, the role of the Internet in their decision and how they selected Internet sites. We also asked patients how much guidance they had received and whether this would have been something they would have liked. Clinicians survey All Consultants, Senior Registrars and Breast Care Nurses within Tyne and Wear and Northumbria NHS UK Trusts were invited to participate in a questionnaire assessing their views on Internet usage and how they guide patients (see Appendix B). A list of recommended sites were included and selected if these were something that healthcare professionals recommended to patients. Results Internet search Using the search term “breast reconstruction after mastectomy” resulted in over 2,710,000 results on Google and 295,000 on Bing. Of all the sites, 82% were targeted towards patients. The intention of the site was clear in three-quarter of cases. Of those sites targeted towards patients, the majority were easy to read, with just 7% being classified as difficult. Commercial and private companies dominated, accounting for 67% of total sites (see Fig. 1). There was a significant commercial influence with the type of information being commercial rather than factual in just under half of cases. The majority of these sites were from private healthcare groups advertising their services or products. Most of these sites explained the surgery in detail but did not discuss risks of surgery or complications. Of all pages that were portrayed as information sites on the topic, 16% were government sites and 9% were from professional bodies but just under a third were provided by private companies. Blogs were very common, accounting for 13% of all sites. Blog sites very commonly featured advertising. The nature of the advertising was surreptitious in nature in 15 of the 24 blog sites that featured advertising. Newspapers and magazines also commonly featured surreptitious advertising.
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Patient and healthcare professionals questionnaires
Fig. 1. Proportion of sites from each provider.
As may be expected, private sites and individual surgeons' sites tended to be subjective rather than objective (both 84% subjective). Government organisations or professional bodies provided objective information in 86% of cases. Charity organisations provided a mixture, with 58 and 42% of objective and subjective information respectively. Overall, sites generally stated who was accountable and providing information, and referenced or clearly justified claims. However, neither of these two criterion were met in just under half of charity sites (46%) and 37% of the privately provided sites. Just 6% of information was government provided and only 13 sites were those recommended in the BAPRAS/ABS guidelines. However, recommended sites featured 1st, 7th and 10th on the first page of Google results and 6, 7th on the first page for Bing. There was a difference in the search engines first results page, with Bing prominently featuring commercial sites and advertising. All NHS national sites had a link to a recommended site. Individual surgeons' sites accounted for 26 sites. To check for concordance of varied search terms we additionally compared the first 50 results on Google when searching using the terms “breast reconstruction after mastectomy” versus “breast cancer reconstruction”. Overall the type of sites was very similar when either search term was used. There was no statistical difference seen (p ¼ 0.63) (see Fig. 2).
A total of 23 patients were asked to participate. All agreed to participate. The mean age was 55 (45e79). Just 1 patient did not have access to the Internet and was excluded. Of those who had access, 68% had searched the Internet for information. A total of 13 patients whom used the internet found the Internet “useful” or “very useful” but only 27% of users felt that it had affected their decision. Ways that patient identified or chose sites are demonstrated in Table 1. The presence recognised logo was the commonest way that patients chose websites followed by choosing known charities. Of the 13 patients who used the internet, 3 identified “featured real patients and their experiences” as a way in which they chose websites and 2 of the 3 patients had received guidance. Of the 22 patients, 14 (61%) reported having received no guidance on where to look for information on the internet. Over half (64%) felt that guidance would have been useful. Interestingly, despite stating that they had not received guidance, patients did select recommended sites and stated that the NHS logo or recognising charity were factors that helped them to identify websites. The most popular recommended sites were Macmillan Cancer Support and Breast Cancer Care (both used by 10 of 15 patients), followed by Cancer Research UK (used by 9 patients). A total of 17 healthcare professionals were invited to participate. All agreed to participate. Amongst healthcare professionals, the majority felt that the Internet was used but was not the major contributing factor to their patients' final decision. A total of 8 respondents felt that Internet use effected the decision “about right” and 7 felt it the effect was “not a lot”; with only 2 respondents feeling that it effected the decision “a lot”. Guidance varied between healthcare professions: 6 of 8 Breast Care Nurses provided guidance “often” or “very often”, but 5 of 9 Doctors “rarely” or “never” did so. Comparing the sites recommended and those used by the patients showed that both Macmillan Cancer Support and Breast Cancer Care were most commonly recommended and matched users (see Fig. 3). BAPRAS was commonly selected by Healthcare professionals but not by patients. The reverse was true for the charity run site, Cancer Research UK that was only recommended by 24% of healthcare professionals but selected by 67% of patients. Discussion In the UK, 41,250 patients are diagnosed with breast cancer each year [12]. Of those who proceed to mastectomy, 21% have immediate reconstruction and 11% delayed reconstruction [13]. Jointly, ABS and BAPRAS have highlighted the need for this complex decision to be guided by “current, reliable, balanced information” and
Table 1 Factors that contributed to patients' choice of Internet site.
Fig. 2. Comparison of type of internet sites when using alternative search terms.
Statement
No of patients who ticked option
Easy to read and understand First page I saw In the first page of results Recognised NHS logo Recognised logo (not NHS) Featured real patients Seemed professional Advised to use the website Surgeon's website whom I knew Charity that I recognised
4 1 0 8 4 3 1 3 0 6
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Fig. 3. Comparison of sites recommended by healthcare professionals and used by patients.
they provide guidance on which resources should be used [6]. In the USA and Australia there are available also online resources provided by national bodies for breast cancer patients considering reconstruction [7,8]. The Internet has become an extremely common source of information for patients and is widely accessed [14]. A recent study showed that around 40% of patients will access the internet to research their surgery and assist in making their decisions [3]. Within breast reconstruction, this may be as high as 58% and has been shown to significantly affect decision making [9,10]. A number of studies in relation to vascular surgery have highlighted a concern with the quality and potentially misleading information provided [15e17]. A study focused on prostate cancer and YouTube showed that information presented was consistently poor quality and faltered with bias [18]. The strong commercial bias exposed in this study further raises serious concern. Over two thirds of the sites available are commercially provided and patients are targeted. Information provided is not uncommonly inaccurate and commercially biased. While informed patients may be aware of commercial sites being biased, more worrying was the findings amongst charity and blog websites. The quality and accountability of information provided on these sites was very variable. This is of concern as charity sites are portrayed as an official source of information and patients may be more acceptant of information provided by charities. From our patient survey, charity websites were the second commonest used sites. Patients identified recognising a charity as a way in which they chose a website. While low participant numbers in this study is a limitation, reliability of charity websites does seem to be an important consideration. Another area of concern is amongst blog sites or real patient stories. Patients may use Blog sites and patient sharing can be useful, however they have been revealed here as an arena for surreptitious advertising. From our patient survey, patients do seek real patient accounts. Patient sharing via workgroups or regulated blogs such as those featured on Breast Cancer Network Australia website should be encouraged and patients warned in relation to unregulated blogs. In modern practice, the desire is that patients have access to, and use reliable sources of information to empower them in shared decisions. The UK recommended Internet sources for information on breast reconstruction were rated positively in terms of readability and HON criterion. In addition, it seems that patients do use these Internet sites. Popular sites amongst both healthcare professionals and patients were Macmillan and Breast Cancer Care. Interestingly, healthcare professionals tended to recommend BAPRAS and Breakthrough Breast Cancer more commonly than patients
used these sites. Also, while Cancer Research UK was only recommended by 4 healthcare professionals, it was the most popular amongst patients. This may reflect again the importance of recognised charities and logos as ways in which patients choose sources. Patients do prefer to receive guidance on where to look for information on the internet. Guiding patients is something that healthcare professionals speaking with patients in this setting should be doing. Providing written information with websites should be an adjunct to this process. Conclusion The use of the Internet by patients or their family members is very common. With regards to breast cancer, we already have a well-established service that includes detailed discussion involving patients and family members, breast surgeons and the Breast Care Nurse. However, this study highlights the concerns about the type and quality of information that may contribute to patient decisions. Patients want to be guided and should not only be provided with a list of reliable and useful Internet sites but should also be counselled on the nature of information they will encounter on the Internet. Authors' contributions AL conceived the study and its design, coordinated and supervised data acquisition and drafted the final manuscript. CM participated in study design, acquisition of data and analysis for the internet site assessments. WB collected data for the patient survey. AC collected surveys of healthcare professionals and oversaw patient questionnaires. All authors read and approved the final manuscript. Conflict of interest statement The authors declare that there is no conflict of interests regarding the publication of this paper. Acknowledgements The authors would like to thank all patients and healthcare professionals who participated in the survey. The authors would like to thank the Breast Care Nurses in Northumbria trust that identified patients at the focus group session. The authors would like to acknowledge Mr Sebastian Aspinall for statistical analysis.
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Appendix A. Patient questionnaires.
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Appendix B. Healthcare Professionals questionnaire.
References [1] Ancona. Surgery in the Internet era. Ann Surg 2012;256(5):671e4. [2] Lim JPA, Sayeed R. Use of the world wide web by cardiac surgery patients. Interact Cardiovasc Thorac Surg 2010;10(5):719e20. [3] Kurup V, Considine A, Hersey D, Dai F, Senior A, Silverman DG, et al. Role of the internet as a information resource for surgical patients: a survey of 877 patients. Br J Anaesth 2013;110(1):54e8. [4] Tamhankar AP, Mazari F, Everitt NJ, Ravi K. Use of the internet by patients undergoing elective hernia repair or cholecystectomy. Ann Royal Coll Surg Engl 2009;91(6):460e3.
[5] Allen JW, Finch R, Coleman MG, Nathanson LK, O'Rourke NA, Fielding GA. The poor quality of information about laparoscopy on the World Wide Web as indexed by popular search engines. Surg Endosc 2002;16(1): 170e2. [6] Rainsbury D, Willett A, editors. Oncoplastic breast reconstruction: guidelines for best practice. ABS and BAPRAS; Nov 2012. Available at:http://www. associationofbreastsurgery.org.uk/media/23851/final_oncoplastic_guidelines_ for_use.pdf. [7] http://www.cancer.gov/cancertopics/wyntk/breast/page7. [8] http://www.bcna.org.au/sites/default/files/the_beacon_53_resources_sheet. pdf.
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[9] Losken A, Burke R, Elliott 2nd LF, Carlson GW. Infonomics and breast reconstruction: are patients using the internet? Ann Plast Surg 2005 Mar;54(3): 247e50. [10] Matros E, Yueh JH, Bar-Meir ED, Slavin SA, Tobias AM, Lee BT. Sociodemographics, referral patterns, and Internet use for decision-making in microsurgical breast reconstruction. Plast Reconstr Surg 2010 Apr;125(4):1087e94. http://dx.doi.org/10.1097/PRS.0b013e3181d0ab63. [11] http://www.healthonnet.org/cgi-bin/HONcode/Inscription/site_evaluation.pl? language¼en&;userCategory¼individuals. [12] http://www.ons.gov.uk/ons/rel/cancer-unit/breast-cancer-in-england/2010/ sum-1.html. [13] Contributions RCS, ABS, BASO, BAPRAS, RCN, NHS IC, HQIP A Nation Audit of the Provision and outcomes of mastectomy and breast reconstruction surgery for Women in England. Fourth Annual Report; 2011. Accessed at, http://www.
[14]
[15]
[16] [17] [18]
hscic.gov.uk/catalogue/PUB02731/clin-audi-supp-prog-mast-brea-reco-2011rep1.pdf. Quinn EM, Corrigan MA, McHugh SM, Murphy D, O'Mullane J, Hill AD, et al. Who's talking about breast cancer? Analysis of daily breast canecr posts on the inernet. Breast 2013 Feb;22(1):24e7. Bailey MA, Coughlin P, Sohrabi S, Griffin KJ, Rashid ST, Troxler MA, et al. Quality and readability of online patient information for abdominal aortic aneurysms. J Vasc Surg 2012;56(1):21e6. Grewal P, Williams B, Alagaratnam S, Neffendorf J, Soobrah R. Quality of vascular surgery Web sites on the internet. J Vasc Surg 2012;56(5):1461e7. Goldberg CG, B L, Gusberg RJ. Limitations of online information on abdominal aortic aneurysm. Int J Vasc Med 2010;7:891e8. Steinberg PL, Wason S, Stern JM, Deters L, Kowal B, Seigne J. YouTube as a source of prostate cancer information. Urology 2010;75(3):619e22.
Contents lists available at ScienceDirect
The Breast journal homepage: www.elsevier.com/brst
Original article
The Internet: What are our patients exposed to when considering breast reconstruction following mastectomy? Amy Light a, *, Colin Munro a, William Breakey b, Adam Critchley c a
South Tyneside District General Hospital, Harton Lane, South Shields NE34 0PL, UK Plastic Surgery Department, Royal Victoria Infirmary, Queen Victoria Road, Newcastle NE1 4LP, UK c Breast Surgery Department, Royal Victoria Infirmary, Queen Victoria Road, Newcastle NE1 4LP, UK b
a r t i c l e i n f o
a b s t r a c t
Article history: Received 26 March 2014 Received in revised form 18 June 2014 Accepted 12 August 2014 Available online 2 September 2014
Background: The exponential increase in internet use has transformed the healthcare provider-patient relationship. There is a need to guide patients. This study analyses the information available, clinicians approach and patients' experiences. Methods: An internet search, “breast reconstruction after mastectomy” was performed on Google and Bing search engines. The first 100 sites on each search were analysed. Target audience, provider and readability were assessed. Modified Health on the Net criterion was used to assess quality. Additionally clinicians and patients were surveyed about their experiences. Results: Private companies dominated, accounting for 67% of sites, the majority advertised private healthcare groups. Of “information pages”, 16% were government sites and 9% were from professional bodies but 28% were private. Blogs had high rates of surreptitious advertising. Patients wanted guidance on which sites to use. Endorsed sites were commonly recommended and used despite only accounting for 13 of the 100 sites. Conclusion: The internet is a powerful tool for disseminating information. There is a wide variety of information presented on breast reconstruction following mastectomy from a range of providers with different interests. Patients should not only be provided with a list of internet resources but also counselled on the types of information they may encounter. © 2014 Elsevier Ltd. All rights reserved.
Keywords: Breast reconstruction Decision making Information provision Internet
Introduction The exponential increase in access and use of the Internet has led to a dramatic transformation in the relationship between care providers and their patients. Increasingly, patients are seeking information for themselves [1,2]. It is not infrequent that patients present information to clinicians that they themselves have discovered on the internet. A recent study estimated that approximately 40% of patients will consult the internet before undergoing surgery [3]. Of these, over one in four are confused or scared by the information they find [4]. The use of this source and access to
* Corresponding author. Permanent address: 59 Elsdon Road, Gosforth, Newcastle NE3 1HY, UK. E-mail addresses: [email protected] (A. Light), [email protected] (C. Munro), [email protected] (W. Breakey), [email protected] (A. Critchley). http://dx.doi.org/10.1016/j.breast.2014.08.005 0960-9776/© 2014 Elsevier Ltd. All rights reserved.
patients is increasingly utilised for commercial gains and receiving accurate information via the internet is increasingly problematic [5]. Clearly, there is a need to guide patients through this useful but potentially misleading source of information. In the United Kingdom, the Association of Breast Surgeons (ABS) and the British Association of Plastic, Reconstructive and Aesthetic Surgeons (BAPRAS) have published clear guidelines for immediate breast reconstruction following mastectomy [6]. Within this it is clearly stated that “Patients should have easy access to current, reliable, balanced information relating to suitable surgical options”. They provide a list of recommended online resources. In the USA, the National Cancer Institute provides an online page of information on breast reconstruction in the context of mastectomy [7]. In Australia, the Breast Cancer Network Australia provides a list of resources which link to patient stories [8]. There are no direct links in USA or Australia to recommended resources that offer greater detail on the procedures available to patients.
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Yet, a survey of 106 patients undergoing breast reconstruction revealed that 68% of the patients used the internet for information related to breast reconstruction. The categories searched were procedure (39%), risks or outcome (35%), surgeon (13%), pictures (11%), and hospital (4%). It was perceived to be helpful, easy to understand and trustworthy in 72%, 69% and 63% of patients respectively. In over half, the information sourced on the Internet influenced their choice of surgery [9]. A survey into patients' choice for microsurgical versus non-micro surgical breast reconstruction found the Internet to be a significant influencing factor on patient choice [10]. There are no studies specifically into what information is available on the Internet to patients undergoing breast reconstruction following mastectomy for breast cancer. There are also no studies that assess how patients choose Internet sites when researching an operation. It is paramount that, as clinicians caring for patients who are considering breast reconstruction in difficult circumstances, we are insightful of what information they may be retrieving. Furthermore, we should use this insight to enable us to provide guidance and improve the quality and accuracy of information patients are receiving. This study evaluates the type and accuracy of information, providers of information and target audience of internet sites that are retrieved when undertaking the most common searches by patients. Additionally, we analyse how clinicians are involving and guiding patients in their gathering of information and how much guidance patients feel they receive or would like to receive on where to look for information. We aim to provide the information necessary to aid clinicians in guiding patients to accurate sources of information when deciding on breast reconstruction following mastectomy. Methods Internet searches An Internet search was performed on the two top Internet search engines (Google and Bing). Medical reference search engines were not assessed as this study was focused on assessing the information accessible on the Internet to the general public. The principal search term “breast reconstruction after mastectomy” was chosen using the commercial programme ‘wordtracker’ (Wordtracker, London, UK, www.wordtracker.com). The first 100 websites analysed in each search engine. No sites were excluded and duplicate results were counted. Cookies and other preference settings were not disabled on the browser. Information was retrieved on type, readability and accuracy of information, level of evidence, commercial interest and advertisement, provider of information and target audience of Internet sites. Type of information was categorised as textbook, patient video, procedural video, procedural description, scientific publication, information for scientific meetings, commercial advertising, news headlines or magazines articles, blogs, or other. This was further classified as objective, subjective or mixed. For information targeted at general public, readability was assessed as easy, moderate, or difficult. Providers of information were categorised as NHS or government bodies, institutions or individual hospitals, profit making companies, individual surgeons working in the private sector, nonprofit making companies, magazines and blogs. Target audience was categorised as patients, healthcare professionals, other professionals (e.g. lawyers) and healthcare industry. A modified HON (Health on the Net) criterion using 14 questions was used to assess the quality of sites [11]. This included
accountability and appropriateness of who was providing information, how well evidenced information was, information of any funding and advertising and whether this was clear and unambiguous. To check for concordance an additional search term “breast reconstruction cancer”, identified using ‘wordtracker’, was used and compared against the principal search term. The first 50 pages were assessed and compared against the principal search results. Chi squared analysis was used to check for any statistically significant differences in types of Internet sites returned on each search term. Patient survey Patients were recruited within the Tyne and Wear and Northumbria NHS Trusts, UK from June1ste14th 2014. All patients attending clinic who were considering a breast reconstruction in the context on oncological mastectomy were invited to participate. In addition, patients were identified through a breast reconstruction focus group. All participants were counselled and provided written consent to participate in a 10-point questionnaire (see Appendix A). All data was anonymous and local approval was granted. Data collected included patient demographics, usual Internet usage and access, the role of the Internet in their decision and how they selected Internet sites. We also asked patients how much guidance they had received and whether this would have been something they would have liked. Clinicians survey All Consultants, Senior Registrars and Breast Care Nurses within Tyne and Wear and Northumbria NHS UK Trusts were invited to participate in a questionnaire assessing their views on Internet usage and how they guide patients (see Appendix B). A list of recommended sites were included and selected if these were something that healthcare professionals recommended to patients. Results Internet search Using the search term “breast reconstruction after mastectomy” resulted in over 2,710,000 results on Google and 295,000 on Bing. Of all the sites, 82% were targeted towards patients. The intention of the site was clear in three-quarter of cases. Of those sites targeted towards patients, the majority were easy to read, with just 7% being classified as difficult. Commercial and private companies dominated, accounting for 67% of total sites (see Fig. 1). There was a significant commercial influence with the type of information being commercial rather than factual in just under half of cases. The majority of these sites were from private healthcare groups advertising their services or products. Most of these sites explained the surgery in detail but did not discuss risks of surgery or complications. Of all pages that were portrayed as information sites on the topic, 16% were government sites and 9% were from professional bodies but just under a third were provided by private companies. Blogs were very common, accounting for 13% of all sites. Blog sites very commonly featured advertising. The nature of the advertising was surreptitious in nature in 15 of the 24 blog sites that featured advertising. Newspapers and magazines also commonly featured surreptitious advertising.
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Patient and healthcare professionals questionnaires
Fig. 1. Proportion of sites from each provider.
As may be expected, private sites and individual surgeons' sites tended to be subjective rather than objective (both 84% subjective). Government organisations or professional bodies provided objective information in 86% of cases. Charity organisations provided a mixture, with 58 and 42% of objective and subjective information respectively. Overall, sites generally stated who was accountable and providing information, and referenced or clearly justified claims. However, neither of these two criterion were met in just under half of charity sites (46%) and 37% of the privately provided sites. Just 6% of information was government provided and only 13 sites were those recommended in the BAPRAS/ABS guidelines. However, recommended sites featured 1st, 7th and 10th on the first page of Google results and 6, 7th on the first page for Bing. There was a difference in the search engines first results page, with Bing prominently featuring commercial sites and advertising. All NHS national sites had a link to a recommended site. Individual surgeons' sites accounted for 26 sites. To check for concordance of varied search terms we additionally compared the first 50 results on Google when searching using the terms “breast reconstruction after mastectomy” versus “breast cancer reconstruction”. Overall the type of sites was very similar when either search term was used. There was no statistical difference seen (p ¼ 0.63) (see Fig. 2).
A total of 23 patients were asked to participate. All agreed to participate. The mean age was 55 (45e79). Just 1 patient did not have access to the Internet and was excluded. Of those who had access, 68% had searched the Internet for information. A total of 13 patients whom used the internet found the Internet “useful” or “very useful” but only 27% of users felt that it had affected their decision. Ways that patient identified or chose sites are demonstrated in Table 1. The presence recognised logo was the commonest way that patients chose websites followed by choosing known charities. Of the 13 patients who used the internet, 3 identified “featured real patients and their experiences” as a way in which they chose websites and 2 of the 3 patients had received guidance. Of the 22 patients, 14 (61%) reported having received no guidance on where to look for information on the internet. Over half (64%) felt that guidance would have been useful. Interestingly, despite stating that they had not received guidance, patients did select recommended sites and stated that the NHS logo or recognising charity were factors that helped them to identify websites. The most popular recommended sites were Macmillan Cancer Support and Breast Cancer Care (both used by 10 of 15 patients), followed by Cancer Research UK (used by 9 patients). A total of 17 healthcare professionals were invited to participate. All agreed to participate. Amongst healthcare professionals, the majority felt that the Internet was used but was not the major contributing factor to their patients' final decision. A total of 8 respondents felt that Internet use effected the decision “about right” and 7 felt it the effect was “not a lot”; with only 2 respondents feeling that it effected the decision “a lot”. Guidance varied between healthcare professions: 6 of 8 Breast Care Nurses provided guidance “often” or “very often”, but 5 of 9 Doctors “rarely” or “never” did so. Comparing the sites recommended and those used by the patients showed that both Macmillan Cancer Support and Breast Cancer Care were most commonly recommended and matched users (see Fig. 3). BAPRAS was commonly selected by Healthcare professionals but not by patients. The reverse was true for the charity run site, Cancer Research UK that was only recommended by 24% of healthcare professionals but selected by 67% of patients. Discussion In the UK, 41,250 patients are diagnosed with breast cancer each year [12]. Of those who proceed to mastectomy, 21% have immediate reconstruction and 11% delayed reconstruction [13]. Jointly, ABS and BAPRAS have highlighted the need for this complex decision to be guided by “current, reliable, balanced information” and
Table 1 Factors that contributed to patients' choice of Internet site.
Fig. 2. Comparison of type of internet sites when using alternative search terms.
Statement
No of patients who ticked option
Easy to read and understand First page I saw In the first page of results Recognised NHS logo Recognised logo (not NHS) Featured real patients Seemed professional Advised to use the website Surgeon's website whom I knew Charity that I recognised
4 1 0 8 4 3 1 3 0 6
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Fig. 3. Comparison of sites recommended by healthcare professionals and used by patients.
they provide guidance on which resources should be used [6]. In the USA and Australia there are available also online resources provided by national bodies for breast cancer patients considering reconstruction [7,8]. The Internet has become an extremely common source of information for patients and is widely accessed [14]. A recent study showed that around 40% of patients will access the internet to research their surgery and assist in making their decisions [3]. Within breast reconstruction, this may be as high as 58% and has been shown to significantly affect decision making [9,10]. A number of studies in relation to vascular surgery have highlighted a concern with the quality and potentially misleading information provided [15e17]. A study focused on prostate cancer and YouTube showed that information presented was consistently poor quality and faltered with bias [18]. The strong commercial bias exposed in this study further raises serious concern. Over two thirds of the sites available are commercially provided and patients are targeted. Information provided is not uncommonly inaccurate and commercially biased. While informed patients may be aware of commercial sites being biased, more worrying was the findings amongst charity and blog websites. The quality and accountability of information provided on these sites was very variable. This is of concern as charity sites are portrayed as an official source of information and patients may be more acceptant of information provided by charities. From our patient survey, charity websites were the second commonest used sites. Patients identified recognising a charity as a way in which they chose a website. While low participant numbers in this study is a limitation, reliability of charity websites does seem to be an important consideration. Another area of concern is amongst blog sites or real patient stories. Patients may use Blog sites and patient sharing can be useful, however they have been revealed here as an arena for surreptitious advertising. From our patient survey, patients do seek real patient accounts. Patient sharing via workgroups or regulated blogs such as those featured on Breast Cancer Network Australia website should be encouraged and patients warned in relation to unregulated blogs. In modern practice, the desire is that patients have access to, and use reliable sources of information to empower them in shared decisions. The UK recommended Internet sources for information on breast reconstruction were rated positively in terms of readability and HON criterion. In addition, it seems that patients do use these Internet sites. Popular sites amongst both healthcare professionals and patients were Macmillan and Breast Cancer Care. Interestingly, healthcare professionals tended to recommend BAPRAS and Breakthrough Breast Cancer more commonly than patients
used these sites. Also, while Cancer Research UK was only recommended by 4 healthcare professionals, it was the most popular amongst patients. This may reflect again the importance of recognised charities and logos as ways in which patients choose sources. Patients do prefer to receive guidance on where to look for information on the internet. Guiding patients is something that healthcare professionals speaking with patients in this setting should be doing. Providing written information with websites should be an adjunct to this process. Conclusion The use of the Internet by patients or their family members is very common. With regards to breast cancer, we already have a well-established service that includes detailed discussion involving patients and family members, breast surgeons and the Breast Care Nurse. However, this study highlights the concerns about the type and quality of information that may contribute to patient decisions. Patients want to be guided and should not only be provided with a list of reliable and useful Internet sites but should also be counselled on the nature of information they will encounter on the Internet. Authors' contributions AL conceived the study and its design, coordinated and supervised data acquisition and drafted the final manuscript. CM participated in study design, acquisition of data and analysis for the internet site assessments. WB collected data for the patient survey. AC collected surveys of healthcare professionals and oversaw patient questionnaires. All authors read and approved the final manuscript. Conflict of interest statement The authors declare that there is no conflict of interests regarding the publication of this paper. Acknowledgements The authors would like to thank all patients and healthcare professionals who participated in the survey. The authors would like to thank the Breast Care Nurses in Northumbria trust that identified patients at the focus group session. The authors would like to acknowledge Mr Sebastian Aspinall for statistical analysis.
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Appendix A. Patient questionnaires.
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Appendix B. Healthcare Professionals questionnaire.
References [1] Ancona. Surgery in the Internet era. Ann Surg 2012;256(5):671e4. [2] Lim JPA, Sayeed R. Use of the world wide web by cardiac surgery patients. Interact Cardiovasc Thorac Surg 2010;10(5):719e20. [3] Kurup V, Considine A, Hersey D, Dai F, Senior A, Silverman DG, et al. Role of the internet as a information resource for surgical patients: a survey of 877 patients. Br J Anaesth 2013;110(1):54e8. [4] Tamhankar AP, Mazari F, Everitt NJ, Ravi K. Use of the internet by patients undergoing elective hernia repair or cholecystectomy. Ann Royal Coll Surg Engl 2009;91(6):460e3.
[5] Allen JW, Finch R, Coleman MG, Nathanson LK, O'Rourke NA, Fielding GA. The poor quality of information about laparoscopy on the World Wide Web as indexed by popular search engines. Surg Endosc 2002;16(1): 170e2. [6] Rainsbury D, Willett A, editors. Oncoplastic breast reconstruction: guidelines for best practice. ABS and BAPRAS; Nov 2012. Available at:http://www. associationofbreastsurgery.org.uk/media/23851/final_oncoplastic_guidelines_ for_use.pdf. [7] http://www.cancer.gov/cancertopics/wyntk/breast/page7. [8] http://www.bcna.org.au/sites/default/files/the_beacon_53_resources_sheet. pdf.
806
A. Light et al. / The Breast 23 (2014) 799e806
[9] Losken A, Burke R, Elliott 2nd LF, Carlson GW. Infonomics and breast reconstruction: are patients using the internet? Ann Plast Surg 2005 Mar;54(3): 247e50. [10] Matros E, Yueh JH, Bar-Meir ED, Slavin SA, Tobias AM, Lee BT. Sociodemographics, referral patterns, and Internet use for decision-making in microsurgical breast reconstruction. Plast Reconstr Surg 2010 Apr;125(4):1087e94. http://dx.doi.org/10.1097/PRS.0b013e3181d0ab63. [11] http://www.healthonnet.org/cgi-bin/HONcode/Inscription/site_evaluation.pl? language¼en&;userCategory¼individuals. [12] http://www.ons.gov.uk/ons/rel/cancer-unit/breast-cancer-in-england/2010/ sum-1.html. [13] Contributions RCS, ABS, BASO, BAPRAS, RCN, NHS IC, HQIP A Nation Audit of the Provision and outcomes of mastectomy and breast reconstruction surgery for Women in England. Fourth Annual Report; 2011. Accessed at, http://www.
[14]
[15]
[16] [17] [18]
hscic.gov.uk/catalogue/PUB02731/clin-audi-supp-prog-mast-brea-reco-2011rep1.pdf. Quinn EM, Corrigan MA, McHugh SM, Murphy D, O'Mullane J, Hill AD, et al. Who's talking about breast cancer? Analysis of daily breast canecr posts on the inernet. Breast 2013 Feb;22(1):24e7. Bailey MA, Coughlin P, Sohrabi S, Griffin KJ, Rashid ST, Troxler MA, et al. Quality and readability of online patient information for abdominal aortic aneurysms. J Vasc Surg 2012;56(1):21e6. Grewal P, Williams B, Alagaratnam S, Neffendorf J, Soobrah R. Quality of vascular surgery Web sites on the internet. J Vasc Surg 2012;56(5):1461e7. Goldberg CG, B L, Gusberg RJ. Limitations of online information on abdominal aortic aneurysm. Int J Vasc Med 2010;7:891e8. Steinberg PL, Wason S, Stern JM, Deters L, Kowal B, Seigne J. YouTube as a source of prostate cancer information. Urology 2010;75(3):619e22.
