A Personalized Data-to-Text Support Tool for Cancer Patients

Hommes, Saar; Lee, Chris van der; Clouth, Felix; Vermunt, Jeroen K.; Verbeek, Xander; Krahmer, Emiel

doi:10.18653/v1/w19-8656

Cited by 8 publications

(9 citation statements)

References 24 publications

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“…A recent example harnessing these techniques for personalised DAs is a prototype decision support tool that generates personalised probabilities for effects on quality of life after chemotehrapy. 33 In short, the support tool relies on the PROFILES 34 registry data set, consisting of over 21 000 patients with cancer within the Netherlands Cancer Registry. With latent class analysis, 35 the tool can predict which outcome scenario is most applicable for a new patient based on individual prognosis data and the PROFILES data set.…”

Section: Discussionmentioning

confidence: 99%

Communication in decision aids for stage I–III colorectal cancer patients: a systematic review

et al. 2021

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ObjectivesTo assess the communicative quality of colorectal cancer patient decision aids (DAs) about treatment options, the current systematic review was conducted.DesignSystematic review.Data sourcesDAs (published between 2006 and 2019) were identified through academic literature (MEDLINE, Embase, CINAHL, Cochrane Library and PsycINFO) and online sources.Eligibility criteriaDAs were only included if they supported the decision-making process of patients with colon, rectal or colorectal cancer in stages I–III.Data extraction and synthesisAfter the search strategy was adapted from similar systematic reviews and checked by a colorectal cancer surgeon, two independent reviewers screened and selected the articles. After initial screening, disagreements were resolved with a third reviewer. The review was conducted in concordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. DAs were assessed using the International Patient Decision Aid Standards (IPDAS) and Communicative Aspects (CA) checklist.ResultsIn total, 18 DAs were selected. Both the IPDAS and CA checklist revealed that there was a lot of variation in the (communicative) quality of DAs. The findings highlight that (1) personalisation of treatment information in DAs is lacking, (2) outcome probability information is mostly communicated verbally and (3) information in DAs is generally biased towards a specific treatment. Additionally, (4) DAs about colorectal cancer are lengthy and (5) many DAs are not written in plain language.ConclusionsBoth instruments (IPDAS and CA) revealed great variation in the (communicative) quality of colorectal cancer DAs. Developers of patient DAs should focus on personalisation techniques and could use both the IPDAS and CA checklist in the developmental process to ensure personalised health communication and facilitate shared decision making in clinical practice.

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Section: Discussionmentioning

confidence: 99%

Communication in decision aids for stage I–III colorectal cancer patients: a systematic review

et al. 2021

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“…The majority of our sample expressed a need for receiving personalized statistics on different topics before and after their initial treatment, ranging from survival rates to risk information about treatment side effects. We therefore recommend further development and implementation of data-driven personalized decision aids and disease risk prediction models (either based on registry, clinical, or patient-reported outcome data) in and outside The Netherlands [ 8 , 11 , 15 , 20 , 21 ], and support their availability to patients and clinicians in daily routine practice and to laypersons on the internet. At the same time, this development comes with several challenges, which may explain why some (personalized) cancer statistics are not currently available to the general public.…”

Section: Discussionmentioning

confidence: 99%

“…An illustrative example of this is the American Surveillance, Epidemiology, and End Results Cancer Survival Calculator (SEER*CSC) [ 11 ], which draws on an extensive cancer statistics database for communicating personalized cancer statistics (cancer incidence, survival rates) in multiple formats to patients via a publicly available web-based tool. Other initiatives that used registry data or other patient-reported data in patient–clinician communication are decision-support tools for estimating personalized health statistics, such as treatment (side) effects or quality of life outcomes [ 8 , 20 , 21 ]. Given these developments, the question arises, then, what the needs and preferences for communicating personalized cancer statistics are among cancer survivors.…”

Section: Introductionmentioning

confidence: 99%

Exploring Cancer Survivor Needs and Preferences for Communicating Personalized Cancer Statistics From Registry Data: Qualitative Multimethod Study

Vromans¹,

Eenbergen²,

Geleijnse³

et al. 2021

JMIR Cancer

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Background Disclosure of cancer statistics (eg, survival or incidence rates) based on a representative group of patients can help increase cancer survivors’ understanding of their own diagnostic and prognostic situation, and care planning. More recently, there has been an increasing interest in the use of cancer registry data for disclosing and communicating personalized cancer statistics (tailored toward personal and clinical characteristics) to cancer survivors and relatives. Objective The aim of this study was to explore breast cancer (BCa) and prostate cancer (PCa) survivor needs and preferences for disclosing (what) and presenting (how) personalized statistics from a large Dutch population-based data set, the Netherlands Cancer Registry (NCR). Methods To elicit survivor needs and preferences for communicating personalized NCR statistics, we created different (non)interactive tools visualizing hypothetical scenarios and adopted a qualitative multimethod study design. We first conducted 2 focus groups (study 1; n=13) for collecting group data on BCa and PCa survivor needs and preferences, using noninteractive sketches of what a tool for communicating personalized statistics might look like. Based on these insights, we designed a revised interactive tool, which was used to further explore the needs and preferences of another group of cancer survivors during individual think-aloud observations and semistructured interviews (study 2; n=11). All sessions were audio-recorded, transcribed verbatim, analyzed using thematic (focus groups) and content analysis (think-aloud observations), and reported in compliance with qualitative research reporting criteria. Results In both studies, cancer survivors expressed the need to receive personalized statistics from a representative source, with especially a need for survival and conditional survival rates (ie, survival rate for those who have already survived for a certain period). Personalized statistics adjusted toward personal and clinical factors were deemed more relevant and useful to know than generic or average-based statistics. Participants also needed support for correctly interpreting the personalized statistics and putting them into perspective, for instance by adding contextual or comparative information. Furthermore, while thinking aloud, participants experienced a mix of positive (sense of hope) and negative emotions (feelings of distress) while viewing the personalized survival data. Overall, participants preferred simplicity and conciseness, and the ability to tailor the type of visualization and amount of (detailed) statistical information. Conclusions The majority of our sample of cancer survivors wanted to receive personalized statistics from the NCR. Given the variation in patient needs and preferences for presenting personalized statistics, designers of similar information tools may consider potential tailoring strategies on multiple levels, as well as effective ways for providing supporting information to make sure that the personalized statistics are properly understood. This is encouraging for cancer registries to address this unmet need, but also for those who are developing or implementing personalized data-driven information tools for patients and relatives.

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“…Furthermore, we did not focus on how patients want to receive such information (e.g., verbal, numerical, visual) [66]. Especially since cancer survivors wanted to receive personalized statistics about quality of life in a numerical format, more research should be dedicated to how to present such subjective data [67]. We also bear in mind that we measured subjective numeracy rather than objective numeracy.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

“…This, in turn, means that a personalized risk might be less reliable from a statistical perspective. However, even simple patient characteristics ('tumor type' or 'age') could be used to personalize outcomes [67] and most studies on communicating personalized risks for cancer screening found positive results [68]. What the effects are of discussing personalized risks about side effects, diagnosis or quality of life in general should be studied more thoroughly, but individual patient tools that communicate personalized risks about cancer could yield positive results [9,69,70].…”

Section: Strengths and Limitationsmentioning

confidence: 99%

Need for numbers: assessing cancer survivors’ needs for personalized and generic statistical information

Vromans

Hommes

Clouth

et al. 2022

BMC Med Inform Decis Mak

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Background Statistical information (e.g., on long-term survival or side effects) may be valuable for healthcare providers to share with their patients to facilitate shared decision making on treatment options. In this pre-registered study, we assessed cancer survivors’ need for generic (population-based) versus personalized (tailored towards patient/tumor characteristics) statistical information after their diagnosis. We examined how information coping style, subjective numeracy, and anxiety levels of survivors relate to these needs and identified statistical need profiles. Additionally, we qualitatively explored survivors’ considerations for (not) wanting statistical information. Methods Cancer survivors’ need for statistics regarding incidence, survival, recurrence, side effects and quality of life were assessed with an online questionnaire. For each of these topics, survivors were asked to think back to their first cancer diagnosis and to indicate their need for generic and personalized statistics on a 4-point scale (‘not at all’- ‘very much’). Associations between information coping style, subjective numeracy, and anxiety with need for generic and personalized statistics were examined with Pearson’s correlations. Statistical need profiles were identified using latent class analysis. Considerations for (not) wanting statistics were analyzed qualitatively. Results Overall, cancer survivors (n = 174) had a higher need for personalized than for generic statistics (p < .001, d = 0.74). Need for personalized statistics was associated with higher subjective numeracy (r = .29) and an information-seeking coping style (r = .41). Three statistical need profiles were identified (1) a strong need for both generic and personalized statistics (34%), (2) a stronger need for personalized than for generic statistics (55%), and (3) a little need for both generic and personalized statistics (11%). Considerations for wanting personalized cancer statistics ranged from feelings of being in control to making better informed decisions about treatment. Considerations for not wanting statistics related to negative experience with statistics and to the unpredictability of future events for individual patients. Conclusions In light of the increased possibilities for using personalized statistics in clinical practice and decision aids, it appears that most cancer survivors want personalized statistical information during treatment decision-making. Subjective numeracy and information coping style seem important factors influencing this need. We encourage further development and implementation of data-driven personalized decision support technologies in oncological care to support patients in treatment decision making.

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A Personalized Data-to-Text Support Tool for Cancer Patients

Cited by 8 publications

References 24 publications

Communication in decision aids for stage I–III colorectal cancer patients: a systematic review

Communication in decision aids for stage I–III colorectal cancer patients: a systematic review

Exploring Cancer Survivor Needs and Preferences for Communicating Personalized Cancer Statistics From Registry Data: Qualitative Multimethod Study

Need for numbers: assessing cancer survivors’ needs for personalized and generic statistical information

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