Abstract
BackgroundDisclosure 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.ObjectiveThe 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).MethodsTo 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.ResultsIn 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.ConclusionsThe 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.
Highlights
IntroductionBackgroundIn cancer care, many newly diagnosed patients and survivors prefer disclosure of cancer statistics and prognostic information [1,2,3,4]
BackgroundIn cancer care, many newly diagnosed patients and survivors prefer disclosure of cancer statistics and prognostic information [1,2,3,4]
JMIR Cancer 2021 | vol 7 | iss. 4 | e25659 | p. 1 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
Summary
BackgroundIn cancer care, many newly diagnosed patients and survivors prefer disclosure of cancer statistics and prognostic information [1,2,3,4]. Patients may wish to receive information about the chances of surviving the disease (survival data), whereas others are in need of knowing the exact number of people who are diagnosed with the same type of cancer (incidence data) Such cancer statistics are increasingly being presented on the internet through various sources, such as general cancer websites for both patients and relatives [5] and health care professionals [6], and in decision-support tools such as patient decision aids [7] or publicly available prediction models [8]. Cancer statistics may help increase patients’ understanding of their own diagnosis, prognosis, and involvement in different stages of the shared decision-making process (eg, option talk stage) with their clinician [9,10]. 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
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