Bowel cancer screening in Learning Disability patients

in Salford

Nadia Awan (CT2)Rupa Gupta (ST5)

Nasim Chaudhry (Consultant Psychiatrist)

Bowel (colorectal) Bowel (colorectal) cancercancer

Bowel cancer is the third most common cancer in the UK

~ 35,000 new cases diagnosed per annum

second most common cause of cancer death

16 100 deaths per annum

lifetime risk of being diagnosed with bowel cancer is around M- 1 in 18 F- 1 in 20

Half the people diagnosed, survive for least 5 years after diagnosis

Risk FactorsRisk Factors AGE – more than 80% occurring in those aged > 60

years old

SEX- M:F similar risk upto 40 years old, then risk M>F

DIET – if overweight, high red meat diet, low fruit & veg and low in fibre, all increase risk

FAM Hx- increase risk if one first-degree relative dx before 45 or two relatives at any age

Genetic- Familial adenomatous polyposis (FAP) or Hereditary non-polyposis colorectal cancer (HNPCC)

ProcessProcess Initial invitation letter and faecal occult blood test (FOBt)

kit sent to those eligible

kit comes with full instructions, cardboard sticks with which to collect the samples from bowel motions and a freepost envelope

Kit returned for analysis at the programme hub laboratory

The kit must be returned within 14 days of the first sample being taken to ensure that a result can be obtained.

National Bowel Cancer National Bowel Cancer Screening ProgrammeScreening Programme

Began in July 2006, fully rolled out by 2010

Programme hubs operate a national system to send out faecal occult blood test kits (FOBt)

screening centres provide endoscopy services and specialist screening nurse clinics for people receiving an abnormal result

Those requiring treatment are referred to local hospitals

AIMS of Audit AIMS of Audit As per the NHS Bowel Cancer Screening Programme:

aim to reduce mortality from bowel cancer ensure informed decisions equal access for those with disabilities

Audit to look at: screening uptake rates for faecal occult blood testing (FOBt) understanding of bowel cancer screening in patients with LD

and those who look after them to ensure informed decisions are made

StandardsStandards1. At least 60% of patients eligible from the LD population

should undergo faecal occult blood screening

2. Patients should have understanding checked and be given appropriate information given prior to screening

3. Patients should have an informed decision made as to whether to participate in the programme

4. Patients should have assistance in making decisions for screening

MethodMethod Audit registered with GMW mental health trust

111 patients living in Salford, over the age of 65 with LD identified

Patients arranged by service/accommodation type to ensure each type included in sample

This included supported tenancy, permanent residental care, sheltered housing, living alone, living with family/carer, adult placement, permanent nursing

Unknowns were excluded (13)

Every other patient was selected, leaving a sample of 49 patients for audit

Easy read questionnaires were written with help from the healthcare facilitator and Total communication lead in Salford Learning Disability service.

10 questions constructed in easy to understand language

Accompanying images taken from ‘An easy guide to Bowel Cancer Screening’, NHS Cancer Screening Programme Information Resources

Simple yes/no questions and free text

Example question Example question

Have you ever had a bowel screening kit sent to you in the post?

YES / NO /CANNOT REMEMBER

If you decided not to have the screening, why was this?

Write your answer here

Cont…Cont… A few questionnaires were sent out through service

providers with an accompanying letter

due to poor return patients were telephoned

Questionnaires were completed over the telephone with patients and carers

Results Results 41/49 questionnaires completed

3 were not returned in the post

4 not able to contact via telephone

1 patient RIP during audit

1. Screening kits sent in 1. Screening kits sent in the post? the post?

2. Samples returned in 2. Samples returned in the postthe post

3. Information before 3. Information before deciding to take part deciding to take part

Staff decision as patient felt to lack capacity

4. Given easy read 4. Given easy read informationinformation

2 patients were able to read information given in packs

5. If decided against, 5. If decided against, reason whyreason why

Patient had breast screening which required mastectomy therefore fears result

Patient not felt to have capacity therefore discussed with GP

Patient agreed, but never passed stool in container for staff

Staff felt patient lacks capacity and would struggle to obtain sample

Patient scared of hospital and does not want anything to do with doctors

6. Understanding of 6. Understanding of test test

Only 1 patient felt they fully understood the test

For 3 patients it was not felt applicable

2 patients did not understand the test at all

7&8. Help from 7&8. Help from someone else, whosomeone else, who

2 patients were helped by carers

All other patients reported help from staff in deciding and carrying out the test

9. Patient’s 9. Patient’s understanding of the understanding of the

reason for the testreason for the test Patient would not be able to understand

Not able to remember, little understanding

To make sure everything is alright

Would not be sure, would forget

Unsure. To make sure you are ok?

Would not know

To test what is going on in bowels-?cancer

Bowel cancer

Investigation leads to hospital ?cancer

Its for cancer

10. Do you know the 10. Do you know the result result

Out of 8 patients who sent the sample:

62% had a negative result (5)

13% had a positive result, which following colonoscopy was normal (1)

25% were unsure of result (2)

Summary Summary 34% of sample received a FOBt kit

Of them, 57% returned samples

42% of patients had the test explained verbally by staff, 29% had no explanation

None of the patients were given easy read information

Many patients did not have the investigation because staff felt they lacked capacity, one patient was discussed with the GP

57% felt they had a reasonable understanding of the test

Staff and carers helped explain and carry out the test

DiscussionDiscussion Uptake of screening in patients with LD in Salford is

lower than the recommendation

The most common reasons for not testing appear to be due to decisions being made by carers and support staff

This could be improved through education and raising awareness

Most patients only understood the reason for test- ‘a bit’

This may have improved if they were presented with easy read information

LimitationsLimitations For the purpose of this audit, we were relying on staff who

may not have been involved in the test

61% said they did not receive the test, however is it possible that it was forgotten or dealt with by other staff

A more accurate representation could be made from GP records

As the questionnaire was primarily over the phone, and patients were not spoken to directly, the patient understanding may not be as representative

Arranging interviews with the patient directly could counter this, although it is time consuming

RecommendationsRecommendations Providing an easy read information leaflet for patients

explaining the procedure and reasons for tests

Raise awareness of easy read leaflets available through ‘cancer screening information resources’-explaining how to perform the test

Training and education of carers and support workers

Incorporating cancer screening test into the annual physical health review

Re-audit following recommendations, with larger sample, using GP information and interview with patients.

References References

Guidance for public health and commissioners , Public Health Resource Unit BCSP, Publication No 3, February 2008

http://www.cancerscreening.nhs.uk/bowel/publications/index.html

http://www.cancerresearchuk.org/

An easy guide to bowel cancer screening, November 2008

Bowel cancer screening: the facts, January 2012

Thank youThank you Any questions?