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Communicating cancer treatment information using the Web: utilizing the patient's perspective in website development.

ABSTRACT: Online cancer information can support patients in making treatment decisions. However, such information may not be adequately tailored to the patient's perspective, particularly if healthcare professionals do not sufficiently engage patient groups when developing online information. We applied qualitative user testing during the development of a patient information website on stereotactic ablative radiotherapy (SABR), a new guideline-recommended curative treatment for early-stage lung cancer.We recruited 27 participants who included patients referred for SABR and their relatives. A qualitative user test of the website was performed in 18 subjects, followed by an additional evaluation by users after website redesign (N?=?9). We primarily used the 'thinking aloud' approach and semi-structured interviewing. Qualitative data analysis was performed to assess the main findings reported by the participants.Study participants preferred receiving different information that had been provided initially. Problems identified with the online information related to comprehending medical terminology, understanding the scientific evidence regarding SABR, and appreciating the side-effects associated with SABR. Following redesign of the website, participants reported fewer problems with understanding content, and some additional recommendations for better online information were identified.Our findings indicate that input from patients and their relatives allows for a more comprehensive and usable website for providing treatment information. Such a website can facilitate improved patient participation in treatment decision-making for cancer.

SUBMITTER: Hopmans W

PROVIDER: S-EPMC4271466 | biostudies-literature | 2014 Dec

REPOSITORIES: biostudies-literature

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Communicating cancer treatment information using the Web: utilizing the patient's perspective in website development.

Hopmans Wendy W Damman Olga C OC Timmermans Danielle R M DR Haasbeek Cornelis J A CJ Slotman Ben J BJ Senan Suresh S

BMC medical informatics and decision making 20141207

<h4>Background</h4>Online cancer information can support patients in making treatment decisions. However, such information may not be adequately tailored to the patient's perspective, particularly if healthcare professionals do not sufficiently engage patient groups when developing online information. We applied qualitative user testing during the development of a patient information website on stereotactic ablative radiotherapy (SABR), a new guideline-recommended curative treatment for early-st ...[more]

PMID: 25481306

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Project description:BackgroundInformation on health and health care is abundant on the internet. To make informed choices, patients need reliable and easy-to-understand information about quality and availability of care providers and treatment options. However, the reliability of such Web-based information is difficult to assess.ObjectiveThis study aimed to test Web-based information about diabetes and dementia and specifically a new presentation format of care routes to see if people are able to understand and use the information.MethodsOverall, 38 cognitive interviews were held; 20 people viewed the information about diabetes and 18 viewed the dementia information. Participants were asked what they would want to know about either diabetes or dementia, what choices they would want to make concerning their preferred care provider and treatment, and what information they would like to find to make these choices. They were then asked to view the relevant pages and comment on them. The interview was focused on general information about the condition, the care route, and the quality information for choosing a hospital. The interviews were transcribed verbatim and then systematically coded and ordered into themes.ResultsThe themes that were developed for both Web pages during the analysis were information needs, findability, usability, comprehension and readability, recognizability, care route, quality information, and usefulness. Information needs were found to be very diverse and dependent on the personal situation and condition of the participant. Several participants were unable to find specific items because they were not where they expected them to be. Most participants were positive about the layout, font, and color scheme of the test pages. However, options of clicking through to another website and indications where information can be expanded and collapsed could be made clearer. Participants generally found the information easy to understand but felt a need for a more detailed explanation of the medical terms. Recognition of the information played an important role: participants assessed whether the information they found matched their experiences. The term care route meant little to most of the participants, but the layout of the care route itself was found to be clear. Not many respondents spontaneously went to the quality information, and a number of participants had difficulty understanding it. Overall, the participants thought the information on the website was useful and helpful.ConclusionsThe cognitive interviews gave numerous insights into how Web-based information is processed and understood. The care route offers a clear overview of the various stages as the condition progresses, but the name care route is not clear to everyone. We gained insight into differences between subgroups of people in terms of information needs, comprehension, and use of the information because the diversity within the group of participants was lower than expected.

Project description:BackgroundUncertainty is integral to evidence-informed decision making and is of particular importance for preference-sensitive decisions. Communicating uncertainty to patients and the public has long been identified as a goal in the informed and shared decision-making movement. Despite this, there is little quantitative research on how uncertainty in health information is perceived by readers.ObjectiveThe aim of this study was to examine the impact of different uncertainty descriptions regarding the evidence for a treatment effect in a written research summary for the public.MethodsWe developed 8 versions of a research summary on a fictitious drug for tinnitus with varying degrees (Q1), sources (Q2), and magnitudes of uncertainty (Q3). We recruited 2099 members of the German public from a web-based research panel. Of these, 1727 fulfilled the inclusion criteria and were randomly presented with one of these research summaries. Randomization was conducted by using a centralized computer with a random number generator. Web-based recruitment and data collection were fully automated. Participants were not aware of the purpose of the study and alternative presentations. We measured the following outcomes: perception of the treatment effectiveness (primary), certainty in the judgement of treatment effectiveness, perception of the body of evidence, text quality, and intended decision. The outcomes were self-assessed.ResultsFor the primary outcome, we did not find a global effect for Q1 and Q2 (P=.25 and P=.73), but we found a global effect for Q3 (P=.048). Pairwise comparisons showed a weaker perception of treatment effectiveness for the research summary with 3 sources of uncertainty compared to the version with 2 sources of uncertainty (P=.04). Specifically, the proportion of the participants in the group with 3 sources of uncertainty that perceived the drug as possibly beneficial was 9% lower than that of the participants in the group with 2 sources of uncertainty (92/195, 47.2% vs 111/197, 56.3%, respectively). The proportion of the participants in the group with 3 sources of uncertainty that considered the drug to be of unclear benefit was 8% higher than that of the participants in the group with 2 sources of uncertainty (72/195, 36.9% vs 57/197, 28.9%, respectively). However, there was no significant difference compared to the version with 1 source of uncertainty (P=.31). We did not find any meaningful differences between the research summaries for the secondary outcomes.ConclusionsCommunicating even a large magnitude of uncertainty for a treatment effect had little impact on the perceived effectiveness. Efforts to improve public understanding of research are needed to improve the understanding of evidence-based health information.Trial registrationGerman Clinical Trials Register DRKS00015911, https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00015911.International registered report identifier (irrid)RR2-10.2196/13425.

Project description:ObjectivesTo investigate how bowel dysfunction after sphincter-preserving rectal cancer treatment, known as low anterior resection syndrome (LARS), is perceived by rectal cancer specialists, in relation to the patient's experience.DesignQuestionnaire study.SettingInternational.Participants58 rectal cancer specialists (45 colorectal surgeons and 13 radiation oncologists).Research procedureThe Low Anterior Resection Syndrome Score (LARS score) is a five-item instrument for evaluation of LARS, which was developed from and validated on 961 patients. The 58 specialists individually completed two LARS score-based exercises. In Exercise 1, they were asked to select, from a list of bowel dysfunction issues, five items that they considered to disturb patients the most. In Exercise 2, they were given a list of scores to assign to the LARS score items, according to the impact on quality of life (QOL).Outcome measuresIn Exercise 1, the frequency of selection of each issue, particularly the five items included in the LARS score, was compared with the frequency of being selected at random. In Exercise 2, the answers were compared with the original patient-derived scores.ResultsFour of the five LARS score issues had the highest frequencies of selection (urgency, clustering, incontinence for liquid stool and frequency of bowel movements), which were also higher than random. However, the remaining LARS score issue (incontinence for flatus) showed a lower frequency than random. Scores assigned by the specialists were significantly different from the patient-derived scores (p<0.01). The specialists grossly overestimated the impact of incontinence for liquid stool and frequent bowel movements on QOL, while they markedly underestimated the impact of clustering and urgency. The results did not differ between surgeons and oncologists.ConclusionsRectal cancer specialists do not have a thorough understanding of which bowel dysfunction symptoms truly matter to the patient, nor how these symptoms affect QOL.

Project description:BackgroundThe increased availability of patient reported outcome data makes it feasible to provide patients tailored risk information of cancer treatment side effects. However, it is unclear how such information influences patients' risk interpretations compared to generic population-based risks, and which message format should be used to communicate such individualized statistics.MethodsA web-based experiment was conducted in which participants (n = 141) read a hypothetical treatment decision-making scenario about four side effect risks of adjuvant chemotherapy for advanced colon cancer. Participants were cancer patients or survivors who were recruited from an online Dutch cancer patient panel. All participants received two tailored risks (of which the reference class was based on their age, gender and tumor stage) and two generic risks conveying the likelihood of experiencing the side effects. The risks were presented either in words-only ('common' and 'very common'), or in a combination of words and corresponding numerical estimates ('common, 10 out of 100' and 'very common, 40 out of 100'). Participants' estimation of the probability, accuracy of their estimation, and perceived likelihood of occurrence were primary outcomes. Perceived personal relevance and perceived uncertainty were secondary outcomes.ResultsTailored risks were estimated as higher and less accurate than generic risks, but only when they were presented in words; Such differences were not found in the verbal and numerical combined condition. Although tailoring risks did not impact participants' perceived likelihood of occurrence, tailored risks were perceived as more personally relevant than generic risks in both message formats. Finally, tailored risks were perceived as less uncertain than generic risks, but only in the verbal-only condition.ConclusionsConsidering current interest in the use of personalized decision aids for improving shared decision-making in oncology, it is important that clinicians consider how tailored risks of treatment side effects should be communicated to patients. We recommend both clinicians who communicate probability information during consultations, and decision aid developers, that verbal descriptors of tailored risks should be supported by numerical estimates of risks levels, to avoid overestimation of risks.

Dataset Information

Communicating cancer treatment information using the Web: utilizing the patient's perspective in website development.

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Communicating cancer treatment information using the Web: utilizing the patient's perspective in website development.

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