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