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

Abstract

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.

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

“…Our findings highlight that most people in our selective sample diagnosed with cancer want to receive statistical information on different health outcomes [ 19 , 20 , 31 ], and especially personalized statistics adjusted to their personal and tumor characteristics [ 22 , 48 ]. However, currently such statistics are not always personalized in clinical practice and patient decision aids [ 16 – 18 ].…”

“…Respondents were then asked to think back to their first cancer diagnosis, and to indicate whether they would have wanted to receive generic and/or specific statistical information regarding: the absolute cancer incidence number (1 item), survival rate (2 items; 5 and 10 year survival rate), treatment-related survival rate (2 items; 5 and 10 year), recurrence rate (2 items; 5 and 10 year), risk of treatment side effects (1 item), and impact of treatment on quality of life (4 items; physical, emotional, cognitive, and social functioning). The selection of topics was based on the needs and preferences of prostate and breast cancer survivors assessed during focus groups [ 22 ], and on earlier comparable studies [ 19 , 20 , 31 ]. All items relating to generic statistical needs were combined to create one average generic-SIN score (α = 0.88), and all items relating to personalized statistical needs were used to create an average personalized-SIN score (α = 0.87).…”

“…Similar to earlier research, we seek to explore the more complex patterns underlying patients’ needs for generic and personalized statistics into statistical needs profiles [ 30 ]. We expect that there might be several factors (cancer type, age, information topic, anxiety, information coping style, numeracy, gender) that could all have an impact on to what degree patients want to receive generic and/or personalized statistics [ 22 , 30 – 32 ].…”

“…Even though several survey studies repeatedly suggest that patients have a desire for receiving prognostic information in general [19][20][21], there has been no detailed investigation into patients' need for specifically receiving personalized numbers and statistics for a range of different outcomes. A recent qualitative study found suggestive evidence that majority of cancer patients want to receive personalized cancer statistics such as survival rates or treatment side effects risks [22], but a more systematic and quantitative analysis is lacking. Therefore, the first aim of this study is to quantitatively assess the extent to which patients have a need for personalized or generic statistics after a cancer diagnosis.…”

Supporting Shared Decision-making About Surveillance After Breast Cancer With Personalized Recurrence Risk Calculations: Development of a Patient Decision Aid Using the International Patient Decision AIDS Standards Development Process in Combination With a Mixed Methods Design

“…Clear and objective risk information is an essential component of PtDA. General risk information (about groups of patients) is often presented, but this information is difficult to translate to individual cases [ 15 , 16 ]. Nomograms are being increasingly developed to better estimate individual personal risks.…”