Presentation on theme: "Citizens’ Juries to inform incontinence research Peter Herbison Preventive and Social Medicine Dunedin School of Medicine."— Presentation transcript:
Citizens’ Juries to inform incontinence research Peter Herbison Preventive and Social Medicine Dunedin School of Medicine
Thanks Jean Hay-Smith Helen Paterson Gaye Ellis Gail Hyland Nikki Solomon Don Wilson NZCA for funding The women who participated
What is the problem? What to research is decided by the investigators How to measure the results of the research is decided by the investigators Clinicians and patients have been known to think differently about the patient’s condition
Inspiration I have been thinking about how to make research more patient orientated a lot recently James Lind Alliance –http://www.lindalliance.org/ –“Tackling treatment uncertainties together” MPH student did a citizens’ jury on breast cancer screening for women 40—49
Citizens’ juries Sometimes it is difficult to get opinions on complex matters Citizens’ juries involve a good deal of instruction and questioning as well as deliberation Have been used for many things Have been criticized
Methods Ad in the Star Midweeker for two consecutive weeks Women with problem bladders rang Gaye who screened them and divided them into 2 groups, predominant stress urinary incontinence and predominant urge urinary incontinence. Purposively selected 14 from each group
Methods 2 Each Jury met on three occasions –Thursday evening Introduction –Friday, all day Education about urinary incontinence –Saturday morning Deliberation and reporting Paid $150 each for participating
Methods 3 Anatomy and Physiology, what can go wrong, and why we think it does Epidemiology Evaluating treatments Outcomes/investigations Treatments –Conservative –Medical/drug –Surgery Service delivery
Methods 4 Deliberation was just the group Reporting back was recorded and notes taken
Age and time with problem Stress –20-291 –30-391 –40-494 –50-593 –60-694 –70-791 –<5yrs8 –5-10yrs4 –>10yrs2 Urge –20-290 –30-393 –40-494 –50-590 –60-695 –70-792 –<5yrs3 –5-10yrs4 –>10yrs7
More details Stress –Stress6 –Mixed8 –Sought help 6 –Treatment3 –1 Māori, 2 Chinese Urge –Urge4 –Mixed10 –Sought help7 –Treatment6 –1 Māori, 2 Other
Both groups’ top priority Make it easier to seek and get help –Remove the stigma by educating the public to make leakage less of an embarrassment The John Kirwan effect –Educate the doctor to know what to do –Educate midwives to inform women –Educate women to approach doctors –Should GPs make asking automatic?
Make life more manageable Information on how to minimise effects on quality of life Simple things like which pads offer the best value for money –Include adverse effects in this (e.g. skin) –What is best for active women Maybe support groups, e.g asthma, RA etc. Impact of waiting to get bad enough for treatment (SUI group)
The true costs Need to work out the costs –Not just the patient costs but the total cost to society Products Doctors visits Treatment Lost opportunities (retire early, don’t seek promotion, cease volunteering, reduce work, etc) Need this to convince the health system to make incontinence a priority.
More information on causes Obesity/Weight loss O/G history Ethnic/cultural factors (e.g. abdomen wrapping after childbirth) The nervous system (mainly UUI) Chemicals/hormones Other such as potty training, toileting at school
Outcomes Quality of life was most important by far –Sex life, partners, emotional stress etc For UUI sleep disruption was important Self empowerment
Conclusions We were all surprised about how much the participants enjoyed the time –In spite of the less than good prognosis –Feeling that they were not alone Is one day enough to learn as much as is needed to make informed decisions? Did they feel inhibited by others?
Conclusions I think the suggestions could easily lead to some research projects –Total cost –Which pad? Should it also lead to local support groups?