THE "NEW" PROSTATE CANCER INFOLINK

Over the past couple of years, Baker and colleagues at the University of Leicester in England have developed and “operationalized” what appears to be a relatively sophisticated survey system to rate patient and spouse/partner/caregiver experiences from initial assessment of risk for prostate cancer through post-treatment follow-up. The “New” Prostate Cancer InfoLink thinks that a similar survey might be useful in the USA and other countries!

The program appears to have been initiated in 2007, and an initial report was issued by the Service Delivery and Organisation Programme (SDO) of the UK’s National Institute for Health Research (NIHR) in September 2008. The media release promoting the initiative has been issued as part of Prostate Cancer Awareness Week in the UK.

Links to detailed information about the survey are available as follows:

• A media release about the initiative
• A summary report on the program
• The complete text of the survey questionnaires and the survey user guide

The goal of the initiative is to allow any part of the UK’s National Health System to use some or all of the materials to assist in the improvement of the patient and spouse/partner/caregiver experience of prostate cancer diagnosis and management.

The surveys track all aspects of the patient and spouse/partner/care-giver experience, including:

• Initial information about risk from the primary care physician
• Referral to the urologist or oncologist as appropriate
• Initial diagnosis
• Information about treatment options (and degree of involvement in treatment choice)
• Information about actual treatment
• Information about follow-up monitoring

Key results based on the initial phase of this study are as follows:

• Patients who have access to specialist nurses reported a better experience of their overall care
• Access to specialist nurses at all stages of treatment would improve services for men with prostate cancer
• All hospital staff need better information about the experience of prostate cancer patients and their spouses and partners to be able to improve the quality of the care they offer

With specific reference to the involvement of specialist nurses, apparently the patients who saw a specialist nurse were:

• Significantly more likely to say that they were given enough printed information about their test results and treatment options
• More likely to feel that their treatment options were clearly explained
• More likely to feel that they had made the treatment decision themselves
• More likely to have been told that they could discuss the treatment decision again, and could change their mind about treatment

While there are significant differences between the ways in which prostate cancer is managed in the UK and the USA because in the UK specialists such as urologists, oncologists,a nd radiation oncologists almost always practice within a hospital setting, the general ideas behind this survey would seem to be equally applicable to the US environment, and we recommend the research summary in particular to members of the US prostate cancer advocacy community.

Filed under: Diagnosis, Management, Risk, Treatment | Tagged: patient experience, quality of care, survey, UK |