Patient Perspective

Adrienne Morgan

adrienne@icpv.org.uk

ICPV believe that clinical research and practice will benefit more patients more quickly if people affected by cancer

are partners with clinicians and healthcare professionals, rather than passive recipients of healthcare.

Extent of patient involvement

• Patient on:

– Trial development group

– Trial management group

• ICPV:

– Consulted on trial protocols and PIS

– Organised focus groups

Why has patient engagement been so successful?

• Willingness and enthusiasm of health care professionals

• Involved from the very beginning• Patients:

– listened to courteously and with genuine interest. – treated as equals – listened to – have made a difference

Patient advocates not working in isolation

• Members of ICPV

• Patient advocate group led by patients for patients

• ICPV provides training, support and mentoring

• Holds:– regular study days

– week long “Science for patient Advocates”

• Has a closed Google group for discussions

ICPV support for OPTIMA

• Overwhelming support from ICPV

• “OPTIMA is urgently needed to prevent patients being subjected to treatment which is dangerous and distressing and to reduce unnecessary costs in the NHS.”

Has the high level of patient engagement made a difference?

• Difficult one to answer “Scientifically”

• Intrinsically “a good idea”

• Health Care Professionals say patient involvement has made a difference

Dr Andreas Makris

“Such close patient engagement right through the development of the trial has been a rewarding experience for all and has resulted in a better trial. OPTIMA is a difficult trial and the patient involvement has ensured that all along what was being proposed was realistic.”

Dr Andreas Makris, Consultant Clinical Oncologist, Mount Vernon. Co-principle investigator OPTIMA

Dr Peter Hall

“Patients have been particularly useful for putting together the health economics questionnaires - working out which costs/expenses might be important to ask about”

Dr Peter Hall, NIHR Clinical Lecturer in Medical Oncology and Health Economics, Leeds. Health Economist OPTIMA

Prof John Bartlett

“This has been such a difficult trial to put together, I think we would have given up without the enthusiasm and support of the patient advocates”

Prof John Bartlett, Ontario Institute for Cancer Research, Toronto. Scientific Advisor OPTIMA

Reducing Chemotherapy• No brainer!!• Almost a year out of my life• Never worked full time again• Catastrophic menopause• Delayed by 6 months:

– Tamoxifen– Radiotherapy

• Oncologist tried to talk me out of chemo

Specialised Commissioning Hub NHSE East of England

• Refused to fund Prosignia

• Only hub not to support

• Save on chemo costs “no-brainer”

• Letter from ICPV

• Reviewed decision (claimed never refused!!)

• Will now fund Excess Treatment Costs

Patient Power!!!

Effects of oestrogen-blockade

• 10 years now recommended

• Ovarian suppression & AI for younger BC

• Often severe menopausal problems

• Thrown out of hospitals to GPs

• Women stop taking their life-saving drugs

Hot Flushes - Awful• Awful

– every 45mins ie over 30/day– For last 11 years

• Severe sleeping problems– Wet bedding every night– Zopiclone/Lorazepam/Alcohol

• New cotton wardrobe• Told would only last a year!!!

– Still just as bad now and will be for the rest of my life!!

• Severe effect on function– Unable to work full time

Evidence of Hot Flushes

Anti-oestrogen adherence

40

50

60

70

80

90

100

0 1 2 3 4 5

20% Increased Breast Cancer Mortality

%

YearsCohort study of adherence to adjuvant endocrine therapy, breast cancer recurrence and mortality. Makubate et al. BJC (2013) 108, 1515-1524

188% increase in early recurrence. Barron, BJC 2013 109, 1513-1521

My Experience• Oncologist offered Prozac• Tried:

– Clonidine (no good)– Gabapentin (too sleepy 900mg/day!!)– venlafaxine (‘orrible)

• Citalopram best SSRI – reduced intensity not frequency– 10, 20 or 40mg daily

• But Megace best of all

Arcuate nucleusKISSPEPTIN

NEUROKININ B

Anterior pituitaryLHFSH

GonadsE2TESTO

GnRH pulse generatorGnRH

Reproductive endocrinology

The HPG axis regulates circulating sex steroid concentrations throughout life

Arcuate nucleusKISSPEPTIN

NEUROKININ B

GnRH pulse generator

Anterior pituitary

Gonads

LHFSH

GnRH

E2

Sexual Dysfunction• Effects of oestrogen blocking drugs

– Vaginal atrophy– Lack of elasticity– Pain during intercourse– No penetrative intercourse since 2007!!!– On SSRIs for hot flushes so no orgasms– Low libido

• Under diagnosed– Medics don’t ask– Women don’t tell (but do tell CNS when asked)

• Impact on QOL hugely underestimated