Patient Education and Counseling 95 (2014) 126–136

Contents lists available at ScienceDirect

Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou

E-Health

Do cancer-specific websites meet patient’s information needs? Emily Warren a,*, Katharine Footman a,1, Michela Tinelli b,2, Martin McKee a,3, Ce´cile Knai a,4 a b

Faculty of Public Health and Policy, London School of Hygiene and Tropical Medicine, 15-17 Tavistock Place, London WC1H 9SH, UK LSE Health and Social Care, London School of Economics and Political Science, Houghton Street, London WC2A 2AE, UK

A R T I C L E I N F O

A B S T R A C T

Article history: Received 22 August 2013 Received in revised form 20 November 2013 Accepted 9 December 2013

Objective: To evaluate commonly used cancer websites’ information provision, we developed and applied an Information Comprehensiveness Tool to breast and prostate cancer websites. Methods: We first collated questions from a systematic literature review on patient information needs. We then classified the questions in terms of spectrum of care, theme, and nature of question. ‘‘Breast cancer’’ and ‘‘prostate cancer’’ were typed into Google, and websites listed on the first page of results were selected. Two researchers, blind to each others’ scores, assessed the same websites using the coding system. Each question was scored on a 3-point scale as not (0%), partially (50%) and fully (100%) answered by two researchers. Average scores were calculated across all questions. Inter-rater reliability was assessed. Results: We identified 79 general, 5 breast, and 5 prostate cancer questions. Inter-rater reliability was good, with an intraclass coefficient of 0.756 (95% CIs 0.729–0.781). 17 questions were not answered thoroughly by any website. Questions about ‘‘future planning’’, ‘‘monitoring’’, and ‘‘decision-making’’ were discussed least. Biomedical questions scored highest. Conclusions: More comprehensive information needs to be provided on breast and prostate cancer websites. Practice implications: This ICT can improve cancer information online and enable patients to engage more actively regarding their information needs. ß 2014 Elsevier Ireland Ltd. All rights reserved.

Keywords: Patient education Patient information needs Online health information

1. Introduction Increased patient expectations about informed consent [1–7], disclosure [8–12], and participation in disease management [13], in the context of a shift towards patient-centred care [14–17], have increased the amount of information that patients expect and changed the manner in which they learn about their disease. Improved information provision has been shown to decrease anxiety and fear about cancer and its treatment [18,19], correct erroneous beliefs [11,20], increase adherence to medical advice [6,21], and improve doctor-patient relationships [15,22], coping mechanisms, psychological wellbeing and quality of life [18,23– 25]. Finally, improvements in patients’ reported daily functioning and pain management have also been attributed to provision of accurate information [26].

* Corresponding author. Tel.: +44 020 7927 2798; fax: +44 020 7927 2701. E-mail addresses: [email protected] (E. Warren), [email protected] (K. Footman), [email protected] (M. Tinelli), [email protected] (M. McKee), [email protected] (C. Knai). 1 Tel.: +44 020 7927 2594. 2 Tel.: +44 020 7955 6628. 3 Tel.: +44 020 7927 2229. 4 Tel.: +44 020 7958 8155. 0738-3991/$ – see front matter ß 2014 Elsevier Ireland Ltd. All rights reserved. http://dx.doi.org/10.1016/j.pec.2013.12.013

Despite increased awareness among clinicians of the need for better information, many patients still feel like they do not receive enough [27–30] or that the information is unclear [2,31–33]. The psychological stress associated with receiving a cancer diagnosis [34–36], especially where there is urgency to start treatment [2,14,36], means that written information and tools, such as question sheets, can be a particularly useful resource [37] because patients can revisit them as their needs and circumstances change [36,38,39]. Written information has been shown to have many advantages, including helping patients obtain as much benefit as possible from the limited time with their doctor [11,37,38], increasing patient confidence in asking questions [9,11,38], and keeping family, friends, and carers involved [8,39,40]. The Internet is now an important source of health information [41,42]. A recent study of the motivations of online health information seekers found that the desire for reassurance, increased understanding and a second opinion to challenge other information were key drivers [43] leading to the Internet being increasingly perceived as a key source of health information [44]. The literature suggests however, that there are disparities in access to the Internet, mainly related to age, race, and education [45–47]. Several tools have been developed to help assess the quality of information available online, including The Health on the Net

E. Warren et al. / Patient Education and Counseling 95 (2014) 126–136

(HON) Foundation criteria [48,49] and the EC ‘Quality Criteria for Health-Related Websites’ [50,51]. These tools evaluate websites on criteria including transparency of authorship and the website’s advertising policy. Neither use the patient’s expressed information needs to evaluate the provision of information. Information currently available on websites may be more reflective of professionals’ priorities than those of the patient. With this in mind, we designed a multi-purpose tool for patients to use to become more informed and which can be used to evaluate websites. Specifically, we sought to evaluate how comprehensively commonly used cancer websites provide information on topics identified as important to patients, from their perspective.

2. Methods We developed the Information Comprehensiveness Tool (ICT) to analyse websites according to their ability to satisfy patient information needs, and applied it to common breast and prostate cancer websites. 2.1. Development the ICT 2.1.1. Information needs for adults in Europe with cancer A list of questions that might be asked by cancer patients was extracted from a systematic literature review of the information needs of adult patients in Europe (reported elsewhere). Of the 50 papers included in the literature review, 17 studied the needs of patients with different cancers, nine examined breast cancer, four examined prostate cancer, 5 examined site-specific cancers, ten studies were of non-cancerous conditions, and the remaining studies focused on a treatment or procedure such as amniocentesis. We did not make further use of the studies of site-specific cancers (other than breast and prostate) as they provided little information not available in other studies and were often highly specific (e.g. stoma care for colorectal cancer patients). Questions on chemotherapy and radiotherapy were included because they are commonly used treatments for various cancers and because we had sufficient information to develop a list of information needs (Fig. 1). While chemotherapy is not generally a first-line treatment for prostate cancer, it was included in the master list because it is still used as a treatment for many cancer patients. Questions were extracted from articles on non-site specific cancers, followed by articles on prostate and breast cancer, chemotherapy and radiotherapy. For the purposes of this analysis, the questions were divided into three separate lists: one master list (potentially relevant to all cancer patients, 79 questions); one supplementary prostate cancer specific list (5 questions); and one supplementary breast cancer specific list (5 questions). Some information needs such as ‘‘How will I feel when investigative tests are carried out?’’ were only found in breast or prostate cancer-specific articles but weredeemed relevant toall cancerpatients and werethus included in the master list. Other specific information needs, like ‘‘What types of breast reconstruction are available?’’ were not relevant to all cancer patients and were kept in the site-specific lists. All of the questions were allocated within three separate categories: spectrum of care (category 1), theme (category 2) and the nature of the question (category 3; see Fig. 1). The researchers developed the categories after reading the questions and deciding which topics allowed for intuitive and helpful analysis. The researchers then further organised the questions into sub-categories which would be most intuitive to non-specialists (i.e. most patients). When there was disagreement about how to classify a question, it was resolved through discussion until there was consensus. Within category 1, questions were divided into sub-categories along the spectrum of care: ‘disease’, ‘diagnosis’, ‘services’

127

‘treatment’, ‘recovery’, and ‘quality of life.’ This category captures the patients’ trajectory through the illness. Within category 2, questions were divided into 11 subcategories. These are ‘decision making’, ‘disease progression’, ‘future planning’, ‘general information’, ‘medication’, ‘monitoring’, ‘procedures’, ‘prognosis’, ‘psychosocial‘, ‘self-care’, and ‘sideeffects.’ This illustrates the need for judgement; side-effects, for example, could also have been allocated to diagnosis or treatment, under the ‘spectrum of care’ category, but form a cross-cutting issue from a patient’s perspective. Finally, within category 3, questions were analysed according to their nature, that is, whether they were biomedical, practical or hypothetical/experiential. For example, questions like, ‘‘Can it metastasize? And if so, where?’’ were classified as biomedical, whilst practical questions included ‘‘How does getting one treatment affect my choice for other treatments?’’ Questions like ‘‘What will the quality of my life be? What will my future condition be like?’’ were classified as hypothetical/experiential. 2.1.2. Calculating scores Numerous tools exist to evaluate websites against a range of metrics [52]. Therefore, our tool is designed to be as straightforward and intuitive as possible, so that it can be used by a wide range of stakeholders. Using the ICT, five different types of scores can be calculated: 1. Individual question scores – Two researchers evaluated whether the website provided information on each question using a 3point scale (yes = 1, partial = 0.5, and no = 0). A ‘‘yes’’ ranking (1 point or 100%) signified that the question was satisfactorily answered, ‘‘no’’ ranking (0 points or 0%) meant that the question was not addressed at all, and ‘‘partial’’ (0.5 points or 50%) meant that the topic was mentioned but not adequately explained or elaborated upon. If, for example, a website wrote that the patient may need a catheter but did not explain why or for what purpose, it was given a partial score (50%). Inter-rater reliability was measured by calculating interclass correlations between the ratings of the two researchers. As inter-rater reliability was good, the scores of the two researchers were averaged and the average score for each question across all websites was calculated. The proportion of websites that answered each question fully, partially or not at all was also calculated separately for breast and prostate cancer websites. 2. Cumulative scores – These were calculated for the block of 79 (non-site specific cancer) questions, and the two blocks of 84 (non-site specific + 5 breast or prostate cancer specific questions). For each block of questions, the mean cumulative scores of the two researchers were divided by the number of questions. 3. Category scores – We wanted to understand whether one subcategory of question within each category was more comprehensively answered than another. For example, is more thorough information provided on diagnosis than on recovery? Three separate series of subgroup scores were developed according to question category (see above: spectrum of care, theme, and nature of the question). Each category’s mean cumulative score across all websites was divided by the number of questions in the category. 4. Website scores – When assessing how comprehensively information needs are met on individual websites, we averaged the total scores of the two researchers and divided the sum by the total number of questions (84). 5. Website sector scores – We assessed website differences by sector (for example, charity or government) in order to find which are more responsive to patient information needs. To do so, we averaged the abovementioned website scores within one sector.

128

E. Warren et al. / Patient Education and Counseling 95 (2014) 126–136

Fig. 1. Creating the typology of patient needs.

The list of questions can be used by patients and medical professionals to ask for or provide detailed information and by website authors to improve the thoroughness of the information provided online. The tool, including the score calculations, can be used by other researchers to evaluate cancer websites in other EU member states. 2.2. Application of the ICT We applied the ICT to websites providing cancer information to the public. As there were no publicly accessible data on which websites are used most and by whom, we used Google (UK), the most commonly used search engine [55], to simulate what a patient may find when beginning to look for health information on the Internet. We examined breast and prostate cancers specifically for three reasons. Firstly, they are common [56,57]. Secondly, much of the literature focused on these cancer sites. Thirdly, those

diagnosed with cancer are likely to look for information on that specific type and not cancer generally. To avoid search results being customised to our browsing history, we cleared our Internet history and deleted all cookies. We then typed ‘‘breast cancer’’ and ‘‘prostate cancer’’ into Google, and analyzed the first page of websites against the list of questions. Though Google’s first page of results (excluding advertisements) has 11 websites, we excluded image suggestions and news reports because of their transient nature. Websites were evaluated based on information provided anywhere in the website. In order to evaluate Wikipedia, we included information on the primary page and then any page connected directly to it, but excluded any pages separated from the original by two degrees or more of separation. Two researchers (EW and KF), blind to each others’ scores, assessed the same websites using the coding system and evaluated the information provided for each question using a 3-point scale.

E. Warren et al. / Patient Education and Counseling 95 (2014) 126–136

As neither researcher is medically trained, the websites were evaluated in terms of the comprehensiveness at providing information, or otherwise stated, according to their ability to satisfy a need for information to an educated lay person. The reliability of the two raters was assessed by calculating the intraclass correlation between their responses to the questions, with a two-way mixed model and testing for absolute agreement, using SPSS. This was calculated for all questions together as well as for each of the three sub-categories within the ‘nature of question’ category.

3. Results 3.1. Development of the ICT 3.1.1. Inter-rater reliability The inter-rater reliability was good, with an intraclass coefficient of 0.76 (95% CIs: 0.73–0.78) for all questions combined. It was slightly lower for hypothetical/experiential questions (0.65 (95% CIs: 0.57–0.72)) than for practical (0.74 (95% CIs: 0.67–0.78)) and biomedical ones (0.79 (95% CIs: 0.74–0.82)).

129

3.2.2. Website comprehensiveness-How well are information needs met? 3.2.2.1. Individual question scores. The individual question scores ranged from 6% (Who should I talk to about an advanced directive etc.) to 95% (What are the basic details of my disease) across all websites (Table 1). Overall, the three best answered questions were ‘‘Is this type of cancer hereditary?/Is there a genetic risk?’’ (94% of websites answered the question fully, 6% answered partially), ‘‘What are the different possible treatments’’ and ‘‘At a physical level, how do the treatments work?’’ (88% answered fully, 12% answered partially for both). The least commonly answered question was ‘‘What happens if I miss a treatment?’’ which was partially answered by 12% and not answered by 88% of the websites. Overall 17 questions (22% of all questions) were not answered thoroughly by any website. 75% of websites answered neither ‘‘When and how will I know if I have been cured?’’ nor ‘‘How do we know if the treatment is working?’’ 3.2.2.2. Cumulative scores. For the 79 general cancer questions, information provision scored a mean average of 52%. There was slightly better information for prostate than breast cancer patients (55% and 51%, respectively).

3.2. Application of the Information Comprehensiveness Tool 3.2.1. Description of websites Our Google search produced 22 websites (11 per cancer site), of which 4 were excluded for being news articles. cancerresearchuk.org was removed twice because various pages within the website came up three times for prostate cancer. This left nine breast cancer and seven prostate cancer websites. The remaining 16 websites (Table 1) were grouped by sector: research (2), encyclopaedic (2), governmental (3), public (2), private (1) and charity (6).

3.2.2.3. Category scores. Category 1 (Spectrum of care): Averaging scores from the nine breast cancer and the seven prostate cancer websites, we found that the most thoroughly addressed subcategory for both cancer sites were ‘‘disease basics’’ and ‘‘diagnosis’’, with questions scoring an average of 67%. ‘‘Services’’ (58% for breast cancer and 56% for prostate cancer) questions were also answered more thoroughly. ‘‘Treatment’’ scored lower, averaging 47% while ‘‘recovery’’ questions were answered the least thoroughly, scoring 43% and 36% for breast and prostate cancer websites, respectively.

Table 1 Google.co.uk hits and website scores, organized by sector and cancers. Sector

Cancer site

Website

Web address

Individual website score (84 questions)

Charity

Breast

Breakthrough Breast Cancer Campaign Breast Cancer Care Macmillian

43% 22% 73% 70%

Prostate

Macmilian

http://www.breakthrough.org.uk/ http://www.breastcancercampaign.org/ http://www.breastcancercare.org.uk/ http://www.macmillan.org.uk/Cancerinformation/Cancertypes/ Breast/Breastcancer.aspx http://www.macmillan.org.uk/Cancerinformation/Cancertypes/ Prostate/Prostatecancer.aspx http://prostatecanceruk.org/

Encyclopaedic

Governmental

Prostate Cancer UK Average charity sector score Breast Wikipedia-Breast Cancer Prostate Wikipedia-Prostate Cancer Average encyclopaedic sector score Breast NHS-Breast Cancer Prostate

Private Public service

NICE Average governmental sector score Breast Medicine Net Average private sector score Breast BBC-Breast Cancer Prostate

Research

NHS-Prostate Cancer

BBC-Prostate Cancer

Average public service sector score Breast Cancer Research UK-Breast Cancer Prostate Cancer Research UK-Prostate Cancer Average research sector score

Total average score of the 16 websites 50.7%. Total average breast cancer score 51%. Total average prostate cancer score 55%.

http://en.wikipedia.org/wiki/Breast_cancer http://en.wikipedia.org/wiki/Prostate_cancer http://www.nhs.uk/Conditions/Cancer-of-the-breast-female/ Pages/Introduction.aspx http://www.nhs.uk/Conditions/cancer-of-the-prostate/Pages/ Introduction.aspx http://www.nice.org.uk/guidance/cg58 http://www.medicinenet.com/breast_cancer/article.htm http://www.bbc.co.uk/health/physical_health/conditions/in_depth/ cancer/breast_cancer.shtml http://www.bbc.co.uk/health/physical_health/conditions/in_depth/ cancer/prostatecancer1.shtml http://www.cancerresearchuk.org/cancer-help/type/breast-cancer/ http://www.cancerresearchuk.org/cancer-help/type/prostate-cancer/

74% 68% 58.3% 45% 44% 44.5% 60% 53% 35% 49.3% 52% 52% 18% 38% 28% 73% 72% 72.5%

130

E. Warren et al. / Patient Education and Counseling 95 (2014) 126–136

Category 2 (Theme): For both cancer types, the most commonly and thoroughly discussed sub-category was ‘‘basic details’’, with questions scoring an average of 70%, followed by information about ‘‘procedures’’ (62%). Three of the four least commonly discussed sub-categories were shared by both breast and prostate cancer websites, including ‘‘future planning’’ (37%), ‘‘monitoring’’ (29%), and ‘‘decision-making’’ (30%). ‘‘Prognosis’’ questions were more often addressed on websites about prostate cancer than breast cancer (53% compared to 31%). Medication was equally comprehensive on websites for breast and prostate cancer websites (47%). Category 3 (Nature of question): Of those questions that were ‘‘biomedical’’, ‘‘practical’’ and ‘‘hypothetical/experiential’’, the most thoroughly answered ones were those that had more concrete or tangible answers. Questions which dealt with the lived experience of cancer were less satisfactorily answered. Looking at the average score for each question in these three subcategories, biomedical questions scored 70%, practical questions scored 47%, and hypothetical/experiential questions scored lowest with 39%. This pattern was true for both cancer sites and across all website sectors. Charity and research based websites dealt with the hypothetical/experiential aspects of information provision best (23% and 25% of these questions were fully answered, respectively). Private and encyclopaedic websites fully answered the fewest hypothetical/experiential questions fully (8% and 2%). 3.2.2.4. Website scores. The average comprehensiveness score of the 16 websites was 51% but the scores varied greatly. Breast cancer websites scores ranged from 73% for Breast Cancer Care and Cancer Research UK to 18% for BBC Health. The quality of information available about prostate cancer also varied widely from 74% for Macmillan to 35% for the National Institute for Health and Clinical Excellence (NICE). 3.2.2.5. Website sector scores. Quality of information by website sector also varied: research-based websites performed the best on average (72%), followed by charity (58%), private (52%), government (48%), encyclopaedic (43%) and public service (27%) (Table 2). The quality of charity websites varied widely, from 22% to 73%, thereby including both highest and lowest scoring websites. There was only a 1% difference in the perceived quality of reporting for breast and prostate cancer on research-based websites, a 3% difference on Wikipedia, and a 4% difference on charity websites run by the same organization. However, there was a 17% disparity in the quality of information provided on breast and prostate cancer websites run by the BBC. The NHS also had an 8% difference in information, providing more thorough information about breast cancer. 4. Discussion and conclusion 4.1. Discussion This evaluation provides insight into the scope of information available on breast and prostate cancer from 16 websites generated by a search of google.co.uk. The list of questions used to judge the website was based on a systematic review of studies reporting patients’ expressed needs. Overall satisfaction with information provision on breast and prostate cancer websites was partial, with an average score of 53%. Research-based websites were generally the most informative (72%). For both cancer types, ‘‘basic details’’ of the disease were most commonly and thoroughly discussed, followed by information about ‘‘procedures’’. Biomedical questions were answered more comprehensively than hypothetical/experiential ones. The findings suggest that there are gaps

in information available online to the average cancer patients regarding diagnosis, treatment, recovery, services, and quality of life. The study has several strengths. Firstly, it was explicitly designed to replicate, as closely as possible, the search process that a patient would use. Secondly, to the best of our knowledge this is the first study of its kind, assessing the completeness of information based on patient’s expressed priorities. Thirdly, the results we provide are purposefully designed to offer practical guidance to improve websites. Additionally, if a website with a specific focus, for example coping with a cancer diagnosis, should be chosen for analysis, the tool is flexible enough still to be used, simply by changing the number in the denominator to the number of questions which fall within the prevue of the website, thereby avoiding receiving an artificially low score. As reported earlier, the inter-rater reliability was good. To our knowledge this is the only tool that examines the comprehensiveness of information on websites, so we are therefore, unable to determine the tool’s construct validity. Our study has some limitations. Firstly, while we deleted our search history and cookies, we did not hide our IP address, which may have influenced the websites that Google suggested. Secondly, the researchers are not trained oncologists, and hence, unable to gauge the clinical accuracy of the information provided. However, as we aimed to assess the comprehensiveness of these websites from a potential patient’s point of view, clinical knowledge was not a prerequisite. Thirdly, we developed our list of questions from a systematic review of studies of cancer patient information needs and thus may be missing important questions that have not so far been identified in research. The needs expressed here are not necessarily the ones that are most important to patients themselves: questions like, ‘‘Will I feel more pain where the cancer is as it progresses?’’ was never mentioned, although some people may want the question answered. Fourthly, although the categories were agreed by two researchers some of the questions could have fit into more than one. Additionally, our literature review included all countries in the European Union while we only applied the tool to websites that appeared on the first page of Google’s UK homepage. Some needs identified through the literature review may therefore, be culturally or contextually irrelevant. Finally despite assuming the role of a potential patient, the researchers are not representative of the wider UK populations, which may impact the way that information was perceived and interpreted. Providing cancer-related information to patients is not only a vital pre-requisite for obtaining informed consent, but research also shows that it is directly associated with improvement in a wide range of outcomes, including patient satisfaction, wellbeing and improved health status [18,23,26,58], and therefore should be a priority for health care and allied-sector professionals. Though the gaps in available information are greatest for hypothetical and experiential questions, which can be difficult to answer, they should still be addressed because they are important to the patient, helping them to understand their prognosis and the ways that cancer might affect their life. Practical questions, such as those related to monitoring cancer and coping with side-effects, are also less commonly answered, and can be more easily addressed on a website. While conducting the evaluation, it became clear that there were specific information needs that are important to the patient but were not addressed in the academic literature and were either ignored or downplayed on the websites. On discussion forums, some users were distressed about side effects which, had they known about prior to treatment, may have influenced their treatment decisions. One woman was seeking advice on a solicitor

Table 2 Individual question scores and cumulative scores for non-site and site specific cancers. Category 1 (spectrum of care)

Category 2 (theme)

Category 3 (nature)

Typology of cancer patient information needs

Average individual question scores All websites

Biomedical

Disease

Disease progression

Hypothetical

Disease

Disease progression

Biomedical

Disease

Disease progression

Biomedical

Disease

General information

Biomedical

Disease

General information

Biomedical

Disease

General information

Biomedical

Disease

Disease progression

Hypothetical

Disease

Disease progression

Hypothetical

Services

General information

Practical

Quality of life (QOL)

Psychosocial

Hypothetical

Diagnosis

Procedures

Biomedical

Diagnosis

Procedures

Biomedical

Diagnosis Diagnosis

Psychosocial Procedures

Hypothetical Biomedical

Treatment

Procedures

Biomedical

Treatment

Procedures

Biomedical

Treatment

Prognosis

Biomedical

Treatment

Decision making

Practical

Treatment

Decision making

Hypothetical

Treatment

Procedures

Practical

Treatment

Procedures

Practical

What are the basic medical details of my condition? What is the course of illness/ How would the disease progress naturally? What are the stages of my cancer? Can it metastasize, and if so where? What are the physical symptoms of having this type of cancer? How common is it? What is the general incidence/prevalence? Is this type of cancer hereditary?/Is there a genetic risk? If left untreated, how fast will it spread? If left untreated, how long will I live? Where I/my family look should or who can I/we talk to get good information about this type of cancer? What impact will having cancer and/or going through treatment have on my family and friends? How do I talk to them about all of this? What types of tests will be done to get a diagnosis? How are the investigative tests carried out? How I will feel during the tests? If I need a biopsy, how much tissue/fluid will be removed? What are the different possible treatments? At a physical level, how do the treatments work? What are the recovery rates for different treatment options? How does getting one treatment affect my choice for other treatments? How long can I safely wait to make up my mind about treatment? How long will it take to complete all the treatments? Where will I go for treatment?

Fully answered

Partially answered

Not answered

Fully answered

Partially answered

Not answered

95%

94%

93%

89%

11%

0%

71%

29%

0%

95%

50%

54%

0%

100%

0%

0%

100%

0%

95%

78%

86%

67%

33%

0%

57%

43%

0%

94%

81%

100%

67%

33%

0%

100%

0%

0%

94%

97%

86%

11%

89%

0%

86%

0%

14%

92%

83%

96%

56%

44%

0%

86%

14%

0%

92%

100%

89%

100%

0%

0%

86%

14%

0%

89%

6%

43%

0%

22%

78%

0%

86%

14%

89%

6%

39%

0%

22%

78%

0%

86%

14%

89%

86%

71%

67%

33%

0%

57%

29%

14%

86%

44%

43%

33%

22%

44%

29%

43%

29%

84%

86%

93%

56%

44%

0%

71%

29%

0%

83%

72%

86%

44%

56%

0%

57%

43%

0%

81% 80%

39% 50%

50% 64%

11% 22%

44% 56%

44% 22%

43% 14%

14% 71%

43% 14%

80%

92%

100%

78%

22%

0%

100%

0%

0%

78%

89%

100%

78%

22%

0%

100%

0%

0%

77%

11%

36%

0%

44%

56%

0%

100%

0%

77%

39%

32%

11%

67%

22%

0%

71%

29%

75%

19%

29%

0%

44%

56%

0%

100%

0%

69%

75%

61%

44%

44%

11%

29%

71%

0%

69%

58%

54%

33%

44%

22%

43%

29%

29%

131

General information

Prostate cancer websites

Prostate cancer websites

E. Warren et al. / Patient Education and Counseling 95 (2014) 126–136

Disease

Breast cancer websites

Breast cancer websites

132

Table 2 (Continued ) Category 1 (spectrum of care)

Category 2 (theme)

Category 3 (nature)

Typology of cancer patient information needs

Average individual question scores All websites

Procedures

Practical

Treatment

Procedures

Practical

Treatment

Procedures

Biomedical

Treatment

Procedures

Hypothetical

Treatment

Self-care

Practical

Treatment Treatment Treatment Treatment

Medication Medication Medication Side-effects

Biomedical Biomedical Biomedical Practical

Treatment

Self-care

Practical

Treatment

Side-effects

Biomedical

Treatment Treatment Treatment

Procedures Procedures Procedures

Biomedical Biomedical Practical

Treatment

General information

Practical

Treatment

Future planning

Hypothetical

Treatment Treatment Treatment

Procedures Procedures Procedures

Biomedical Biomedical Biomedical

Treatment Treatment

Medication Side-effects

Practical Biomedical

Treatment

Side-effects

Practical

Treatment

Self-care

Practical

Treatment

Side-effects

Practical

QOL Treatment

Side-effects Side-effects

Practical Practical

QOL

Side-effects

Practical

QOL

Side-effects

Practical

QOL

Side-effects

Practical

Are there any clinical trials I might be eligible for? Is complimentary care (acupuncture, herbal medicine) an option? Are there any alternative treatments? What are they? What will happen if I miss a treatment? What do I need to know about self-care during treatment? What is chemotherapy? How effective is chemo? Is there a choice of chemo drugs? Is there a risk I’ll need emergency hospitalizations? Will I need a catheter? And If so, will I learn about catheter care? What is cardiac toxicity? How common is it? If it happens, what do I do? What is radiation? How effective is radiation? If I choose radiation, will I have large sections of my body radiated? Do I need to wear anything special to radiation treatments? What treatments might I need after finishing radiation? What are the surgical options? How effective is surgery? What will happen during surgery? Will I need medication? Are there any side effects of my treatment? What are the short and longterm side-effects of treatment? How do I best cope with the sideeffects? Do the side-effects come and go? Or are they constant? Will I feel really tired? What is oesophogal burning? Is it common? If I get it, what should I do? Will I lose my hair? Can I do anything to prevent it? Will the treatment change the way I look? Will I feel nauseous or vomit?

Prostate cancer websites

Fully answered

Partially answered

Prostate cancer websites Not answered

Fully answered

Partially answered

Not answered

67%

36%

68%

0%

78%

22%

43%

43%

14%

66%

56%

46%

33%

33%

33%

29%

29%

43%

63%

42%

39%

11%

67%

22%

0%

86%

14%

63%

11%

0%

0%

22%

78%

0%

0%

100%

59%

33%

32%

11%

44%

44%

0%

57%

43%

59% 59% 56% 56%

86% 11% 67% 33%

86% 18% 64% 54%

78% 0% 44% 11%

11% 44% 33% 44%

11% 56% 22% 44%

86% 0% 43% 14%

0% 43% 43% 57%

14% 57% 14% 29%

56%

39%

25%

11%

44%

44%

0%

71%

29%

55%

11%

11%

0%

44%

56%

0%

29%

71%

55% 53% 52%

86% 22% 58%

100% 57% 61%

67% 11% 0%

33% 33% 100%

0% 56% 0%

100% 14% 14%

0% 86% 86%

0% 0% 0%

52%

17%

0%

0%

33%

67%

0%

0%

100%

52%

19%

29%

0%

44%

56%

0%

71%

29%

52% 50% 48%

94% 22% 81%

96% 43% 79%

78% 0% 56%

22% 67% 44%

0% 33% 0%

86% 0% 43%

14% 100% 57%

0% 0% 0%

47% 45%

33% 83%

21% 86%

0% 78%

67% 11%

33% 11%

14% 57%

14% 43%

71% 0%

44%

78%

71%

67%

22%

11%

29%

71%

0%

44%

50%

54%

22%

56%

22%

43%

29%

29%

44%

39%

43%

0%

78%

22%

0%

100%

0%

42% 42%

78% 25%

75% 18%

78% 0%

0% 67%

22% 33%

57% 0%

29% 57%

14% 43%

42%

75%

79%

56%

33%

11%

57%

29%

14%

42%

64%

36%

33%

56%

11%

0%

86%

14%

41%

89%

75%

89%

0%

11%

57%

43%

0%

E. Warren et al. / Patient Education and Counseling 95 (2014) 126–136

Treatment

Breast cancer websites

Breast cancer websites

Psychosocial

Hypothetical

QOL

Psychosocial

Practical

Recovery Recovery

Procedures Self-care

Hypothetical Practical

QOL

Prognosis

Hypothetical

QOL

Future planning

Hypothetical

QOL

Self-care

Practical

QOL

Psychosocial

Hypothetical

Services

Self-care

Practical

Services

Psychosocial

Practical

Services

Psychosocial

Practical

QOL

Prognosis

Hypothetical

QOL

Psychosocial

Hypothetical

Recovery

Future planning

Practical

Services

General information

Practical

Recovery Treatment

Future planning Monitoring

Practical Hypothetical

Recovery

Monitoring

Hypothetical

Recovery

Future planning

Hypothetical

QOL Disease

Prognosis Prognosis

Hypothetical Hypothetical

Recovery

Monitoring

Practical

Recovery

Monitoring

Practical

Recovery

Future planning

Hypothetical

Recovery

Monitoring

Practical

Services

General information

Hypothetical

Treatment

Future planning

Practical

During treatment and recovery, how will my quality of life be affected? How will the treatment affect my lifestyle? What will recovery be like? What do I need to know about self-care during recovery? What will my quality of life be? What will my future condition be like? What will my functional wellbeing be like? Will I be able to do all my day-to-day activities and hobbies? Are there any helpful devices I should know about? What will my emotional wellbeing be like? Where can I get psychological support? Are there any support groups I could join? Where can I talk to other patients or read narratives about people who have my type of cancer/ treatment? What will my physical wellbeing be like? How will having cancer/ treatment impact my sexual wellbeing? What types of emergencies can happen and what should I do? Where do I get financial information and/or support? What happens after treatment? How do we know if the treatment is working? What kind of follow-up happens after treatment? What do we do if treatment is unsuccessful? What is my prognosis? What is my chance of being cured? When and how will I know if I have been cured? How do I monitor the cancer during treatment and recovery? What do we do if the cancer comes back? What are the signs of recurrence? What are the different care settings (hospital, nursing home, homecare)? If my cancer is incurable, is euthanasia an option?

41%

44%

54%

11%

56%

33%

14%

71%

14%

38%

42%

50%

11%

56%

33%

14%

57%

29%

36% 36%

44% 44%

39% 39%

22% 22%

44% 44%

33% 33%

14% 29%

43% 14%

43% 57%

36%

25%

46%

0%

56%

44%

14%

71%

14%

34%

42%

43%

11%

56%

33%

29%

29%

43%

34%

36%

21%

22%

56%

22%

43%

57%

0%

33%

64%

61%

44%

33%

22%

29%

57%

14%

33%

67%

68%

44%

44%

11%

43%

43%

14%

33%

58%

61%

22%

56%

22%

43%

43%

14%

31%

53%

57%

33%

44%

22%

43%

29%

29%

31%

56%

71%

22%

67%

11%

43%

57%

0%

30%

47%

68%

33%

22%

44%

0%

100%

0%

28%

31%

39%

0%

78%

22%

14%

71%

14%

25%

67%

71%

67%

0%

33%

71%

0%

29%

23% 23%

61% 8%

46% 14%

56% 0%

11% 11%

33% 89%

29% 0%

29% 43%

43% 57%

22%

67%

50%

56%

22%

22%

29%

43%

29%

22%

44%

43%

11%

56%

33%

14%

57%

29%

22% 20%

42% 22%

68% 43%

22% 0%

44% 44%

33% 56%

0% 0%

100% 86%

0% 14%

14%

19%

4%

0%

33%

67%

0%

14%

86%

13%

28%

21%

22%

44%

33%

0%

71%

29%

13%

47%

46%

22%

44%

33%

29%

57%

14%

11%

39%

32%

22%

44%

33%

0%

71%

29%

11%

36%

29%

11%

44%

44%

0%

71%

29%

9%

11%

14%

0%

22%

78%

0%

29%

71%

E. Warren et al. / Patient Education and Counseling 95 (2014) 126–136

QOL

133

134

Table 2 (Continued ) Category 1 (spectrum of care)

Category 2 (theme)

Category 3 (nature)

Typology of cancer patient information needs

Average individual question scores All websites

Future planning

Practical

Cumulative score for general questions (79 total)

52%

50%

Disease

General information

Biomedical

Diagnosis

General information

Biomedical

Disease

Disease progression

Biomedical

QOL

Side-effects

Practical

QOL

Disease progression

Hypothetical

Cumulative score including prostate cancer specific questions (84 total)





Diagnosis

Procedures

Practical

Diagnosis

Procedures

Biomedical

QOL

Side-effects

Hypothetical

QOL

Medication

Practical

Treatment

Procedures

Biomedical

Cumulative score including breast cancer specific questions (84 total)

Who should I talk to/how do I get an advanced directive, living will, last will and testament, power of attorney (etc)? 53%

Where is the prostate and what does it do? What is prostate cancer? What is the prostatic specific antigen? Why does it matter? Why is it said that patients don’t live longer with early diagnosis? Will treatment affect my bladder? If left untreated, will prostate cancer affect bladder functioning? 55%

Are there any risks to breast cancer screening? What is sentinel lymph node technique? What are its dis/ advantages? Will there be changes in my untreated breast? Can I use of contraceptives and/ or hormone replacement therapy? What breast reconstruction is available? When does it happen?

Prostate cancer websites

Fully answered

Partially answered

Prostate cancer websites Not answered

6%

36%

36%

22%

22%

56%

29%

42%

29%

30%

48%

22%



Additional prostate cancer specific questions – – 100% –

Fully answered

Partially answered

Not answered

29%

14%

57%



100%

0%

0%





93%







71%

29%

0%





32%







0%

71%

29%





89%







57%

43%

0%





86%







57%

43%

0%







32%

47%

21%

Additional breast cancer specific questions – 58% – 33%

44%

22%









53%



11%

78%

11%









44%



0%

89%

11%









39%



22%

33%

44%









81%



67%

33%

0%









51%



29%

42%

28%







E. Warren et al. / Patient Education and Counseling 95 (2014) 126–136

Services

Breast cancer websites

Breast cancer websites

E. Warren et al. / Patient Education and Counseling 95 (2014) 126–136

to sue her doctor for not informing her that radiation to the breast area can cause tissue to shrink. A man using the community forum was distressed because he had not been informed prior to prostate surgery that his penis would decrease in size, now a recognised complication of treatment for prostate cancer [59]. Neither of these complications was mentioned in the literature, and while potentially not clinically significant, they may seriously impact a person’s quality of life, self-image, and ability to cope. Therefore, surveys which seek to gather information on patients’ information needs should include patients in the design of their tools and take advantage of the rich material on web forums, rather than rely exclusively on the published literature or the views of medical experts, which are incomplete and often different from those of patients [12]. Patients report preferring information from a specialist with strong communication and interpersonal skills [60,61]. Websites are not able to give individualized patient-specific information and should only be used as a supplement to the health-care provider. If website quality improves, it is important that it is still viewed as an additional resource and not a replacement for doctor provided information and support. This is especially important given that not all patients have the same level of computer, internet, basic or numerical literacy. Indeed, they also vary in their information needs. Cultural factors and personal circumstances play an important role, as do age and educational attainment [9,10,14,28]. The clinician must also assess how much information to give [12,61,62], especially as some patients may decide that they do not want additional information as part of their coping strategy [6]. Equally important is that while the question sheet includes emotional and familial aspects of cancer, some of the most important questions-the more existential ones-are omitted. Questions like, ‘‘Why me?’’ and ‘‘Did I live my life well?’’ will not likely be answered satisfactorily by any website or health-care professional, yet that does not negate the question’s importance, and should not be devalued. 4.2. Conclusion The information needs of patients diagnosed with breast or prostate cancer are complex and dynamic. Websites were found to have a dearth of information about treatment, recovery, and quality of life issues. Biomedical queries are more likely to be discussed on websites than hypothetical questions or those relating to the wider experience of having cancer. 4.3. Practice implications The tool is designed so that patients can use it as a check-list to encourage dialogue and raise concerns with health care professionals. Health care professionals can use the question list to ensure they talk to their patients about a range of information needs. Website developers, governments, charities, and other online information providers can use the tool to uncover gaps in the information they provide and make their website more responsive to users’ needs. Finally, other researchers can use the ICT to test websites in other European countries. The tool can also be expanded to include more questions about other treatment options and considerations specific to other cancer sites. A relatively simple software package could also be designed to aid analysis. To improve the quality of the information available to patients who seek it on the Internet, websites must improve the content of their web-pages to meet the needs expressed by patients. For example, the NHS website for both cancer sites would have been more helpful to patients if it expanded its sections on cancer

135

monitoring. The lowest scoring charities, Breakthrough and Breast Cancer Campaign, would be more responsive to patient needs if they provided more detailed information on disease progression, future planning, prognosis, psychosocial topics, and self-care. Funding source This work was supported by the European Union 7th Framework Programme EU Cross Border Care Collaboration (EUCBCC). Contract no: 242058. Sole responsibility lies with the authors and the European Commission is not responsible for any use that may be made of the information contained therein. The funder played no role in the design of the study, the interpretation of the findings, the writing of the paper, or the decision to submit. Conflict of interest statement None declared. References [1] Moumjid N, Charles C, Morelle M, Gafni A, Bre´mond A, Farsi F, et al. The statutory duty of physicians to inform patients versus unmet patients’ information needs: the case of breast cancer in France. Health Policy 2009;91:162– 73. [2] Prinjha S, Evans J, McPherson A. Women’s information needs about ductal carcinoma in situ before mammographic screening and after diagnosis: a qualitative study. J Med Screen 2006;13:110–4. [3] Feldman-Stewart D, Capirci C, Brennenstuhl S, Tong C, Abacioglu U, Gawkowska-Suwinska M, et al. Information needs of early-stage prostate cancer patients: a comparison of nine countries. Radiother Oncol 2010;94:328–33. [4] Beaver K, Booth K. Information needs and decision-making preferences: comparing findings for gynaecological, breast and colorectal cancer. Eur J Oncol Nurs 2007;11:409–16. [5] Applebaum PS, Lidz CW, Meisel A. Informed consent: legal theory and clinical practice. New York: Oxford University Press; 1987. [6] Butow PN, Kazemi JN, Beeney LJ, Griffin AM, Dunn SM, Tattersall MH. When the diagnosis is cancer: patient communication experiences and preferences. Cancer 1996;77:2630–7. [7] Buchanan J, Cosolo W, Millership R, Zimet A, Zalcberg J, Borland R, et al. Patients’ beliefs about cancer management. Support Care Cancer 1996;4:110– 7. [8] Piredda M, Rocci L, Gualandi R, Petitti T, Vincenzi B, De Marinis MG, et al. Survey on learning needs and preferred sources of information to meet these needs in Italian oncology patients receiving chemotherapy. Eur J Oncol Nurs 2008;12:120–6. [9] Zeguers M, de Haes HCJM, Zandbelt LC, Ter Hoeven CL, Franssen SJ, Geijsen DD, et al. The information needs of new radiotherapy patients: how to measure? Do they want to know everything? And if not, why? Int J Radiat Oncol Biol Phys 2010;82:418–24. [10] Giacalone A, Blandino M, Talamini R, Bortolus R, Spazzapan S, Valentini M, et al. What elderly cancer patients want to know? Differences among elderly and young patients. Psycho-Oncology 2007;16:365–70. [11] Jenkins V, Fallowfield L, Saul J. Information needs of patients with cancer: results from a large study in UK cancer centres. Brit J Cancer 2001;84:48–51. [12] Capirci C, Feldman-Stewart D, Mandoliti G, Brundage M, Belluco G, Magnani K. Information priorities of Italian early-stage prostate cancer patients and of their health-care professionals. Patient Educ Couns 2005;56:174–81. [13] Moattari M, Ghobadi A, Beigi P, Pishdad G. Impact of self management on metabolic control indicators of diabetes patients. J Diabetes Metab Disord 2012;11:6. [14] Almyroudi A, Degner LF, Paika V, Pavlidis N, Hyphantis T. Decision-making preferences and information needs among Greek breast cancer patients. Psycho-Oncology 2001;20:871–9. [15] Mallinger JB, Griggs JJ, Shields CG. Patient-centered care and breast cancer survivors’ satisfaction with information. Patient Educ Couns 2005;57:342. [16] Engel GL. The need for a new medical model: a challenge for biomedicine. Science 1977;196:129–36. [17] Faber M, Voerman G, Erler A, Eriksson T, Baker R, De Lepeleire J, et al. Survey of 5 European countries suggests that more elements of patient-centered medical homes could improve primary care. Health Aff (Millwood) 2013;32:797– 806. [18] D’haese S, Vinh-Hung V, Bijdekerke P, Spinnoy M, de Beukeleer M, Lochie N, et al. The effect of timing of the provision of information on anxiety and satisfaction of cancer patients receiving radiotherapy. J Cancer Educ 2000;15:223–7. [19] Mills ME, Sullivan K. The importance of information giving for patients newly diagnosed with cancer: a review of the literature. J Clin Nurs 2001;8:631–42.

136

E. Warren et al. / Patient Education and Counseling 95 (2014) 126–136

[20] Graydon J, Galloway S, Palmer-Wickham S, Harrison D, Rich-van der Bij L, West P, et al. Information needs of women during early treatment for breast cancer. J Adv Nurs 2008;26:59–64. [21] Hinds C, Streater A, Mood D. Functions and preferred methods of receiving information related to radiotherapy. Perceptions of patients with cancer. Cancer Nurs 1995;18:374. [22] Arraras JI, Illarramendi JJ, Valerdi JJ, Wright SJ. Truth-telling to the patient in advanced cancer: family information filtering and prospects for change. Psycho-Oncology 1995;4:191–6. [23] Thomas R, Daly M, Perryman B, Stockton D. Forewarned is forearmed—benefits of preparatory information on video cassette for patients receiving chemotherapy or radiotherapy—a randomised controlled trial. Eur J Cancer 2000;36:1536–43. [24] Fallowfield LJ, Hall A, Maguire GP, Baum M. Psychological outcomes of different treatment policies in women with early breast cancer outside a clinical trial. Brit Med J 1990;301:575–80. [25] Caffo O, Fellin G, Graffer U, Luciani L. Assessment of quality of life after radical radiotherapy for prostate cancer. Brit J Urol 1996;78:557–63. [26] Stewart MA. Effective physician–patient communication and health outcomes: a review. CMAJ: Can Med Assoc J 1995;152:1423. [27] Tamburini M, Gangeri L, Brunelli C, Beltrami E, Boeri P, Borreani C, et al. Assessment of hospitalised cancer patients’ needs by the Needs Evaluation Questionnaire. Ann Oncol 2000;11:31–7. [28] Dale J, Jatsch W, Hughes N, Pearce A, Meystre C. Information needs and prostate cancer: the development of a systematic means of identification. BJU Int 2004;94:63–9. [29] Templeton H, Coates V. Informational needs of men with prostate cancer on hormonal manipulation therapy. Patient Educ Couns 2003;49:243–56. [30] Adler J, Paelecke-Habermann Y, Jahn P, Landenberger M, Leplow B, Vordermark D. Patient information in radiation oncology: a cross-sectional pilot study using the EORTC QLQ-INFO26 module. Radiat Oncol 2009;4:40. [31] Rehnberg G, Absetz P, Aro AR. Women’s satisfaction with information at breast biopsy in breast cancer screening. Patient Educ Couns 2001;42:1–8. [32] Gattellari M, Butow PN, Tattersall MHN, Dunn SM, MacLeod CA. Misunderstanding in cancer patients: why shoot the messenger? Ann Oncol 1999;10:39–46. [33] Meredith P. Patient satisfaction with communication in general surgery: problems of measurement and improvement. Soc Sci Med 1993;37:591–602. [34] Graydon J, Galloway S, Palmer-Wickham S, Harrison D, Rich-van der Bij L, West P, et al. Information needs of women during early treatment for breast cancer. J Adv Nurs 1997;26:59–64. [35] Ream E, Richardson A. The role of information in patients’ adaptation to chemotherapy and radiotherapy: a review of the literature. Eur J Cancer Care (Engl) 1996;5:132–8. [36] Friis LS, Elverdam B, Schmidt KG. The patient’s perspective. Support Care Cancer 2003;11:162–70. [37] Gaston CM, Mitchell G. Information giving and decision-making in patients with advanced cancer: a systematic review. Soc Sci Med 2005;61:2252–64. [38] Leydon GM, Boulton M, Moynihan C, Jones A, Mossman J, Boudioni M, et al. Cancer patients’ information needs and information seeking behaviour: in depth interview study. Brit Med J 2000;320:909–13. [39] De Lorenzo F, Ballatori E, Di Costanzo F, Giacalone A, Ruggeri B, Tirelli U. Improving information to Italian cancer patients: results of a randomized study. Ann Oncol 2004;15:721–5. [40] Chalmers KI, Luker KA, Leinster SJ, Ellis I, Booth K. Information and support needs of women with primary relatives with breast cancer: development of

[41]

[42]

[43]

[44]

[45] [46] [47]

[48]

[49] [50]

[51] [52]

[55] [56] [57]

[58] [59]

[60]

[61]

[62]

the Information and Support Needs Questionnaire. J Adv Nurs 2001;35:497– 507. Klemenc-Ketis Z, Kersnik J. Seeking health advice on the Internet in patients with health problems: a cross-sectional population study in Slovenia. Inform Health Soc Care 2013;38:280–90. Hay J, Coups EJ, Ford J, DiBonaventura M. Exposure to mass media health information: skin cancer beliefs, and sun protection behaviors in a United States probability sample. J Am Acad Dermatol 2009;61:783–92. Powell J, Inglis N, Ronnie J, Large S. The characteristics and motivations of online health information seekers: cross-sectional survey and qualitative interview study. J Med Internet Res 2011;13:pe20. Kummervold PE, Chronaki CE, Lausen B, Prokosch HU, Rasmussen J, Santana S, et al. eHealth trends in Europe 2005–2007: a population-based survey. J Med Internet Res 2008;10:pe42. Huang GJ, Penson DF. Internet health resources and the cancer patient. Cancer Invest 2008;26:202–7. Lee C-J, Gray SW, Lewis N. Internet use leads cancer patients to be active health care consumers. Patient Educ Couns 2010;81:S63–9. Castleton K, Fong T, Wang-Gillam A, Waqar MA, Jeffe DB, Kehlenbrink L, et al. A survey of Internet utilization among patients with cancer. Support Care Cancer 2011;19:1183–90. Lawrentschuk N, Abouassaly R, Hackett N, Groll R, Fleshner NE. Health information quality on the internet in urological oncology: a multilingual longitudinal evaluation. Urology 2009;74:p1058. Health on the Net Foundation, available from: http://www.hon.ch/ [cited 2013]. Ream E, Blows E, Scanlon K, Richardson A. An investigation of the quality of breast cancer information provided on the internet by voluntary organisations in Great Britain. Patient Educ Couns 2009;76:10–5. European Commission. eEurope 2002: quality criteria for health related .websites. Office for Official Publications of the European Communities; 2002 Eppler M, Muenzenmayer P. Measuring information quality in the web context: a survey of state-of-the-art instruments and an application methodology. In: International conference on information quality; 2002. Wikipedia, Google Search http://en.wikipedia.org/wiki/Google_Search; 2013 [accessed 22.03.13]. Hsing AW, Tsao L, Devesa SS. International trends and patterns of prostate cancer incidence and mortality. Int J Cancer 2000;85:60–7. UK, C.R. Breast Cancer Key Facts. 2012 [cited 2013 11/04/2013]; available from: http://www.cancerresearchuk.org/cancer-info/cancerstats/keyfacts/ breast-cancer/. Cassileth BR, Zupkis RV, Sutton-Smith K, March V. Information and participation preferences among cancer patients. Ann Intern Med 1980;92:p832. Parekh A, Chen M-H, Hoffman KE, Choueiri TK, Hu JC, Bennett CL, et al. Reduced penile size and treatment regret in men with recurrent prostate cancer after surgery: radiotherapy plus androgen deprivation, or radiotherapy alone. Urology 2013;81:130–5. Tamburini M, Gangeri L, Brunelli C, Boeri P, Borreani C, Bosisio M, et al. Cancer patients’ needs during hospitalisation: a quantitative and qualitative study. BMC Cancer 2003;3:p12. Vogel BA, Bengel J, Helmes AW. Information and decision making: patients’ needs and experiences in the course of breast cancer treatment. Patient Educ Couns 2008;71:79–85. Murtagh F, Thorns A. Evaluation and ethical review of a tool to explore patient preferences for information and involvement in decision making. J Med Ethics 2006;32:311–5.

Do cancer-specific websites meet patient's information needs?

To evaluate commonly used cancer websites' information provision, we developed and applied an Information Comprehensiveness Tool to breast and prostat...
470KB Sizes 1 Downloads 0 Views