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Sasha Shepperd

Publications and source records attributed to Sasha Shepperd.

7 recordsLinked to original sources

Why men with prostate cancer want wider access to prostate specific antigen testing: qualitative study.

OBJECTIVES: To explore the attitudes of men with confirmed or suspected prostate cancer to testing for prostate specific antigen. DESIGN: Qualitative interview study with a purposive sample. SETTING: Great Britain. PARTICIPANTS: 52 men with suspected or confirmed prostate cancer, recruited through general practitioners, urologists, patient support groups, and charities. RESULTS: Almost all men remembered their prostate specific antigen test but recalled being given little information beforehand. Arguments in favour of increased access to testing included the belief that early diagnosis would reduce mortality, improve quality of life, and save the NHS money. Men also thought that a national screening programme should be available because symptoms can be ambiguous, screening for cancer is responsible health behaviour, and screening would encourage men to be tested. Four men who opposed a screening programme had gathered information alerting them to uncertainty about the benefits of treatment, and two regretted that they had been tested. Others thought that access to testing is restricted in the United Kingdom because of a lack of government backing, concerns about the accuracy of the test, and a lack of resources. CONCLUSIONS: The few men in this study who subscribed to the argument that evidence of the benefits of treatment is a prerequisite for a screening programme did not want to see screening introduced. Men who proposed an alternative set of principles for testing gave reasons that did not all relate to overoptimism about the benefits of early diagnosis. People who plan services and people who respond to requests for testing need to understand men's perspectives and concerns.

Attitude to Health↗

A 5-star system for rating the quality of information based on DISCERN.

OBJECTIVE: To develop an explicit scheme for calculating a 5-star quality rating for consumer health information, and to test if there is good agreement be tween this and the final DISCERN quality question. DESIGN: A sample of 15 consumers and health professionals rated 26 health information leaflets covering a broad range of conditions and treatments using two new 5-star-rating schemes and the existing DISCERN final quality rating. Each scheme is based on the 15 DISCERN criteria, but the 5-star schemes provide more explicit methods for summarizing overall quality. The level of agreement between the three different rating systems was compared using Kappa scores with quadratic weights. Participants were also asked to complete a brief questionnaire that was designed to elicit their views on using a visual summary of the quality of health information. RESULTS: The level of agreement between each 5-star-rating system and the existing DISCERN quality rating question was high (kappa = 0.86, 95% CI 0.83-0.89 in both instances). Seventy-seven per cent of the sample preferred the second star-rating scheme, and 80% reported they would use such a scheme. CONCLUSION: Assigning a single quality score using an explicit scoring scheme (represented by stars) based on answers to the DISCERN questionnaire is a reliable and valid way of rating consumer health information.

Adult↗

The use of patients' stories by self-help groups: a survey of voluntary organizations in the UK on the register of the College of Health.

OBJECTIVE: First-hand accounts of illness experience are believed to provide important insights for other patients and their carers. We report the results of a survey that explored how patients' stories are being collected and used by self-help and voluntary groups. METHODS: The annual College of Health survey contacts 2 458 addresses, which includes many self-help groups and voluntary associations. A brief questionnaire for the self-help groups on the register was attached to the summer 1999 survey on behalf of the DIPEx (database of individual patient experience) project. RESULTS: DIPEx received replies from 309 organizations representing a wide range of interests and conditions. These indicated that 202 (65%) of the groups currently use patients' stories in various ways. A further 59 (19%) of the groups reported that although they are not currently using them, they would like to in the future. Organizations that use patients' stories were invited to describe how they use them and provide examples, if applicable. Content analysis of the free text descriptions revealed 22 distinct uses among the 202 organizations using patient stories. The most frequent uses are the inclusion of patient stories in interviews or articles for the group newsletter (74 or 37%) and the use of stories for inclusion in newspaper articles or media broadcasts (31 or 15%). Some form of database of patients' stories was maintained by 23 groups (12%). CONCLUSIONS: These findings suggest that patients' stories are widely collected and used to support a wide range of the recognized functions of self-help and voluntary groups. This is encouraging to the DIPEx project's efforts to collect and analyse accounts of illness experience, which will be presented with evidence-based information about the effects of treatments.

Journal Article↗

Why DISCERN?

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Journal Article↗