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:Background Insufficient transfer of medicines information is a common challenge at discharge from hospital. Following discharge, home dwelling patients are expected to manage their medicines themselves and adequate counselling is an important prerequisite for patient empowerment and self-efficacy for medicines management. Objective The aim was to identify patients' needs for medicines information after discharge from hospital, including the patients' perception and appraisal of the information they received at discharge. Setting The study enrolled patients discharged from three medical wards at a secondary care hospital in Oslo, Norway. Method Patients were included at the hospital, at or close to the day of discharge and qualitative, semi-structured interviews were performed during the first 2 weeks after discharge. Eligible patients were receiving medicines treatment on admission and after discharge, were handling the medicines themselves, and discharged to their own home. Data were collected in 2017. Interviews were analysed with thematic analysis inspired by Systematic Text Condensation. Main outcome measure Patients' perceptions of medicines information. Results In total, 12 patients were interviewed. They were discharged in equal numbers from the three wards, representing both sexes and a broad age range. Patients perceive medicines information as a continuum and not limited to specific encounters, like the discharge conversation. They gain information in several ways; by receiving information from health care professionals, through observations, and by seeking it themselves. Some thought they could have been better informed about adverse reactions and how to manage life while being a medicines user. Others felt they did not want or need more information. Patients employ various strategies for coping with their use of medicines, influencing their self-efficacy towards medicine management. Conclusion Medicines information should focus on empowering the patients throughout the hospital stay and not solely at discharge, taking into account the individual patient's needs for information, preferences and prior knowledge.

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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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