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Uro-Oncology Survivorship Clinic
Laurence Clarke, Consultant Urologist, SRFT
Margaret Russell, Urology CNS, SRFT
Helen Shepherd, Lead Physiotherapist, SRFT
Frances Collins, Clinical Psychologist, SRFT
Sheraz Ahmed, Clinical Psychologist, SRFT
Background
• People who have finished cancer treatment
often have difficulties emotionally, practically,
medically and financially
• Far more can be done to improve the lives of
cancer survivors
• Support for people living with or beyond
cancer should not finish after treatment but
should continue into a phase of supported
aftercare
What problems do urological
cancer survivorship patients
face?
The Prostate
• Incontinence
• Lower urinary tract symptoms
• Erectile dysfunction
• Depression
• Anxiety
• Bowel problems
Macmillan and Survivorship
• How should we support people living with or beyond cancer?
• All people living with or beyond cancer should have access to the following: – Support for people experiencing physical or
emotional consequences relating to their cancer or its treatment
– Timely access to psychological therapies to address any mental health issues
– Access to specialist medical care for complications that occur after cancer
THE EUROPEAN BILL OF HUMAN RIGHTS
FOR CANCER PATIENTS 2014 PSYCHOLOGY MATTERS
Survivorship Clinic
• Aim:
– “To develop a multidisciplinary clinic to
offer medical and psychological support
for urological cancer patients with
complex problems that have developed as
a consequence of their cancer treatment”
• Macmillan awarded the SRFT Department of
Urology £25,000 as part of the “Living with and
beyond cancer” fund in order to pilot the clinic
Clinic Design
• Referral criteria
• MDT
• PROMS
• Concerns checklist
• Action plan
Clinic Design /2
• Referral criteria – Patient who has completed treatment for urological cancer with
two or more of the following problems: • Incontinence
• Lower urinary tract problems (LUTS)
• Erectile dysfunction (ED)
• Depression, anxiety, other psychological problems
• Pain
• MDT
• PROMS
• Concerns checklist
• Action plan
Clinic Design /3
• Referral criteria
• MDT – Margaret Russell, Urology Specialist Nurse
– Sheraz Ahmed / Frances Collins, Clinical Psychologists
– Helen Shepherd, Pelvic Floor Lead Physiotherapist
– Laurence Clarke, Consultant Urologist
• PROMS
• Concerns checklist
• Action plan
Clinic Design /4
• Referral criteria
• MDT
• PROMS – EQ-5D
– IPSS
– ICIQ-UI
– SHIM
– PHQ-9
– IES-R
• Concerns checklist
• Action plan
Clinic Design /5
• Referral criteria
• MDT
• PROMS
• Concerns checklist
– Consider each PROM
– Consolidate and rank concerns into a list
– Patient “scores” each concern based on degree of impact on quality of life
• Action plan
Clinic Design /6
• Referral criteria
• MDT
• PROMS
• Concerns checklist
• Action plan
– For each concern a tailored and robust action
plan is formulated and agreed in conjunction
with patient
Progress so far……
• 5 clinics run so far January – June 2016
• 11 patients reviewed
• 5 DNAs
Demographics
• Mean age 66 yrs (44-79)
• All men
• Treatment completed between 2005-2015
Primary Treatment
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Prostate Renal
Primary Treatment /2
0%
10%
20%
30%
40%
50%
60%
XRT alone ProstatectomyAND XRT
Prostatectomyalone
AS
• Primary management of the 10 patients with a diagnosis of CaP
Primary Treatment / 3
• From the 4 patients who underwent prostatectomy
0%
10%
20%
30%
40%
50%
60%
70%
80%
Open Laparoscopic
Primary Treatment /4
• Of the 5 patients who underwent radiotherapy
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
Primary XRT and LHRH AS then XRT
EQ-5D-3L
EQ-5D
Mobility Self care Activities Pain Anxiety
1 2 3 1 2 3 1 2 3 1 2 3 1 2 3
55% 45% 0% 91% 9% 0% 45% 55% 0% 55% 36% 9% 55% 45% 0%
• Mean visual analogue health score 68/100 (range 35-
95)
1. No issues
2. Moderate problems
3. Severe problems
IPSS
IPSS
0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
50%
Mild Mod Sev
• Mean IPSS 11 – moderately symptomatic
– range 1-26
IPSS - QOL
0%
5%
10%
15%
20%
25%
30%
35%
40%
Delighted - Mostlysatisfied
Mixed-mostlyunhappy
Unhappy - terrible
• Mean QOL 3 – “mixed”
– range 1-6
ICIQ-UI Short Form
ICIQ-UI short form
0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
50%
0 1 to 5 6 to 12 13 to 18 19 to 21
• 0 No incontinence
• 1 to 5 Slight
• 6 to 12 Moderate
• 13 to 18 Severe
• 19 to 21 Very Severe
SHIM
SHIM
0%
10%
20%
30%
40%
50%
60%
70%
80%
Severe ED Moderate ED Mild-ModerateED
Mild ED No ED
Identifying Concerns
Identifying Concerns
0%
10%
20%
30%
40%
50%
60%
70%
80%
Identifying Concerns /2
0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
50%
No concerns 1 concern 2 concerns 3 concerns 4 concerns
After assessment in clinic how
might patients be managed?
Outcomes
0%
10%
20%
30%
40%
50%
60%
70%
Patient Feedback
Patient Feedback
• Did you feel this clinic was appropriate for
you?
– Yes 100%
• Did you feel enough time was given within
this clinic to address all your needs?
– Yes 100%
Patient Feedback /2
• What went well?
– “All the session from start to finish”
– “Everything”
– “The meeting was a big bonus”
– “All of it”
– “Just to talk to someone gave me a lot of
confidence and assurance”
Patient Feedback /3
• What could we do better?
– “Not sure yet”
– “Nothing”
– “There’s nothing else you can do, you do
enough”
– “It was very good”
– “Long wait”
– “Nothing all good”
Discussion • Many patients still suffering unaddressed consequences from
their cancer treatment – Sometimes several years after treatment completed
• Multifactorial problems – Unusual for issues to occur in isolation
• Clinician-intensive – Assessment takes time and pts need to be given time to express
problems
– Because of this should be reserved for those pts with complex issues
• Anecdotally patients sometimes reluctant to discuss side effects of treatment with clinicians – This clinic provides them with “permission” and opportunity to talk freely
– Use of PROMS provides route to opening conversation
– Concerns checklist helps to consolidate problems
• DNA rate has been high – May be multifactorial (evening clinics, patients invited to attend but may
change mind, still feel reluctant to address issues)
Thank you