Dataset Information

The value of personalised risk information: a qualitative study of the perceptions of patients with prostate cancer.

ABSTRACT:

Objective

To explore the experiences of patients with prostate cancer with risk information and their perceptions of the value of personalised risk information in treatment decisions.

Design

A qualitative study was conducted using focus groups. Semistructured interviews explored participants' experiences with using risk information, and their perceptions of the potential value of personalised risk information produced by clinical prediction models.

Participants

English-speaking patients, ages 54-82, diagnosed with prostate cancer within the past 3 years, residing in rural and non-rural geographic locations in Maine (USA), and attending prostate cancer patient support groups.

Setting

6 focus groups were conducted with 27 patients; separate groups were held for patients with low-risk, medium-risk and high-risk disease defined by National Comprehensive Cancer Network guidelines.

Results

Several participants reported receiving risk information that was imprecise rather than precise, qualitative rather than quantitative, indirect rather than direct and focused on biomarker values rather than clinical outcomes. Some participants felt that personalised risk information could be useful in helping them make better informed decisions, but expressed scepticism about its value. Many participants favoured decision-making strategies that were heuristic-based and intuitive rather than risk-based and deliberative, and perceived other forms of evidence-emotions, recommendations of trusted physicians, personal narratives-as more reliable and valuable in treatment decisions.

Conclusions

Patients with prostate cancer appear to have little experience using personalised risk information, may favour heuristic-based over risk-based decision-making strategies and may perceive personalised risk information as less valuable than other types of evidence. These decision-making approaches and perceptions represent potential barriers to the clinical use of personalised risk information. Overcoming these barriers will require providing patients with greater exposure to risk information, education about the nature and value of personalised risk information and training in deliberative decision-making strategies. More research is needed to confirm these findings and address these needs.

SUBMITTER: Han PK

PROVIDER: S-EPMC3773630 | biostudies-literature | 2013 Sep

REPOSITORIES: biostudies-literature

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Publications

The value of personalised risk information: a qualitative study of the perceptions of patients with prostate cancer.

Han Paul K J PK Hootsmans Norbert N Neilson Michael M Roy Bethany B Kungel Terence T Gutheil Caitlin C Diefenbach Michael M Hansen Moritz M

BMJ open 20130913 9

<h4>Objective</h4>To explore the experiences of patients with prostate cancer with risk information and their perceptions of the value of personalised risk information in treatment decisions.<h4>Design</h4>A qualitative study was conducted using focus groups. Semistructured interviews explored participants' experiences with using risk information, and their perceptions of the potential value of personalised risk information produced by clinical prediction models.<h4>Participants</h4>English-spea ...[more]

PMID: 24038007

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Project description:ABSTRACT Background Investigating perceptions of control over mortality risk may be fundamental to understanding health behaviours and tackling socioeconomic gradients in health. Few studies have explored perceptions of control over different causes of death and there is a lack of qualitative risk research. Our aim was to examine participants’ perceptions of control over potential causes of death and the sources that inform perceptions of risk. Method We conducted semi-structured interviews with 24 participants (14 female and 10 male) and conducted a template analysis to analyse the transcripts. Findings We identified six themes to represent participants’ perceptions of control over potential mortality risks and the sources that inform these perceptions: Health-Related Mortality Risks, External Causes of Risk, Finding Balance, Family Medical History, Online Sources of Risk and Health-Related Information, and Health Misinformation. Dying from heart disease was broadly reported as being a controllable risk, whereas cancer was mostly discussed as uncontrollable. Gender-specific cancers were perceived as posing a significant risk to life, however controlling this risk was discussed in terms of screening and treatment, not prevention. Family medical history was discussed as an informative source for longevity predictions, but less so for specific causes of death. Most risk information is retrieved from ‘Dr Google’, though trusted sources, such as NHS websites, are used for validation. Health misinformation online was seen as a problem experienced by other people, rather than the individual. Conclusions Causal pathways between behaviours and specific cancers may not be obvious to individuals. Messages emphasising the broader links between diet, alcohol and general cancer risk may highlight the controllability of cancer risk through improved health behaviours. Furthermore, given the rise in health misinformation, and the belief that it is other people not ourselves that are typically susceptible to believing misinformation online, further attempts are needed to combat this growing ‘infodemic’.

Dataset Information

The value of personalised risk information: a qualitative study of the perceptions of patients with prostate cancer.

Objective

Design

Participants

Setting

Results

Conclusions

Publications

The value of personalised risk information: a qualitative study of the perceptions of patients with prostate cancer.

Similar Datasets

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