Delivering clinical research to make patients, and the NHS, better

Cancer Patients’ Experience of Research

Findings and Opportunities From NCPES (National Cancer Patient Experience Survey)

The report gives analyses by:

• Type of cancer

• Patient Demographics

• Individual Trust

• Region

It is openly accessible and available online at:

http://www.quality-health.co.uk/surveys/national-cancer-patient-experience-survey

Analyses In National Report

Tumour Group Number of Respondents Percentage

Breast 13916 20.2%Colorectal / Lower Gastroinstestinal

8899 12.9%

Lung 5018 7.3%Prostate 5585 8.1%‘Big 4’ Combined 33418 49%Brain / Central nervous system

730 1.1%

Gynaecological 3896 5.7%Haematological 11602 16.9%Head and neck 2437 3.5%Sarcoma 720 1.0%Skin 1854 2.7%Upper Gastroinstestinal 4283 6.2%Urological (excluding Prostate)

7058 10.3%

Other Cancers 2739 4.0%

Respondents by Cancer Type

These questions were introduced in 2012 following consumer pressure.

In 2012 the results were as follows:

• Since your diagnosis, has anyone discussed with you whether you would like to take part in cancer research?

Yes 33%

• If yes, were you glad to have been asked?

Yes 95%

• If no, would you like to have been asked?

Yes 53%

3 Questions about Research2012

• Have you seen information (such as leaflets, posters, information screens, etc.) about cancer research in your hospital?

Yes 84%

• Since your diagnosis, has anyone discussed with you whether you would like to take part in research?

Yes 32%

• If so, did you then go on to take part in research?

Yes 64%

3 Questions about Research2013

• By Type of Cancer

• By Trust

• By Local Clinical Research Network (LCRN)

• By Patient Demographics

Variations in Responses to Research Questions

2012 Discussion about taking part in research?

Breast 39% All 33% Range 15%-39%

Glad to have been asked?

All 95% no significant difference between cancer types

Would like to have been asked?

Breast 56% All 53% Range 47% - 64%

2013

Saw Information?

Breast 87% All 85% Range 78% - 88%

Discussion?

Breast 37% All 32% Range 16% - 38%

Went on To Take Part?

Breast 58% All 64% Range 26% - 73%

Breast Patients

2012 Discussion about taking part in research?

Colorectal 36% All 33% Range 15%-39%

Glad to have been asked?

All 95% no significant difference between cancer types

Would like to have been asked?

Colorectal 51% All 53% Range 47%-64%

2013

Saw Information?

Colorectal 85% All 85% Range 78%-88%

Discussion?

Colorectal 32% All 32% Range 16%-38%

Went on To Take Part?

Colorectal 65% All 64% Range 26%-73%

Colorectal/ Lower Gastro-intestinal Patients

2012 Discussion about taking part in research?

Lung 35%All 33% Range 15%-39%

Glad to have been asked?

All 95% no significant difference between cancer types

Would like to have been asked?

Lung 53%All 53% Range 47%-64%

2013

Saw Information?

Lung 88%All 85% Range 78%-88%

Discussion?

Lung 31%All 32% Range 16%-38%

Went on To Take Part?

Lung 56%All 64% Range 26%-73%

Lung Patients

2012 Discussion about taking part in research?

Prostate 35% All 33% Range 15%-39%

Glad to have been asked?

All 95% no significant difference between cancer types

Would like to have been asked?

Prostate 54% All 53% Range 47%-64%

2013Saw Information?

Prostate 85% All 85% Range 78%-88%

Discussion?

Prostate 34% All 32% Range 16%-38%

Went on To Take Part?

Prostate 62% All 64% Range 26%-73%

Prostate Patients

2012 Discussion about taking part in research?

Brain 34% All 33% Range 15%-39%

Glad to have been asked?

All 95% no significant difference between cancer types

Would like to have been asked?

Brain 64% All 53% Range 47%-64%

2013Saw Information?

Brain 87% All 85% Range 78%-88%

Discussion?

Brain 38% All 32% Range 16%-38%

Went on To Take Part?

Brain 64% All 64% Range 26%-73%

Brain/ CNS Patients

2012 Discussion about taking part in research?

Gynaecology 28% All 33% Range 15%-39%

Glad to have been asked?

All 95% no significant difference between cancer types

Would like to have been asked?

Gynaecology 51% All 53% Range 47%-64%

2013Saw Information?

Gynaecology 85% All 85% Range 78%-88%

Discussion?

Gynaecology 38% All 32% Range 16%-38%

Went on To Take Part?

Gynaecology 63% All 64% Range 26%-73%

Gynaecology Patients

2012 Discussion about taking part in research?

Haematology 33% All 33% Range 15%-39%

Glad to have been asked?

All 95% no significant difference between cancer types

Would like to have been asked?

Haematology 53% All 53% Range 47%-64%

2013Saw Information?

Haematology 86% All 85% Range 78%-88%

Discussion?

Haematology 36% All 32% Range 16%-38%

Went on To Take Part?

Haematology 73% All 64% Range 26%-73%

Haematology Patients

2012 Discussion about taking part in research?

Head/Neck 34% All 33% Range 15%-39%

Glad to have been asked?

All 95% no significant difference between cancer types

Would like to have been asked?

Head/Neck 54% All 53% Range 47%-64%

2013Saw Information?

Head/Neck 86% All 85% Range 78%-88%

Discussion?

Head/Neck 29% All 32% Range 16%-38%

Went on To Take Part?

Head/Neck 67% All 64% Range 26%-73%

Head and Neck Patients

2012 Discussion about taking part in research?

Sarcoma 33% All 33% Range 15%-39%

Glad to have been asked?

All 95% no significant difference between cancer types

Would like to have been asked?

Sarcoma 59% All 53% Range 47%-64%

2013Saw Information?

Sarcoma 86% All 85% Range 78%-88%

Discussion?

Sarcoma 34% All 32% Range 16%-38%

Went on To Take Part?

Sarcoma 72% All 64% Range 26%-73%

Sarcoma Patients

2012 Discussion about taking part in research?

Skin 27% All 33% Range 15%-39%

Glad to have been asked?

All 95% no significant difference between cancer types

Would like to have been asked?

Skin 47% All 53% Range 47%-64%

2013Saw Information?

Skin 80% All 85% Range 78%-88%

Discussion?

Skin 18% All 32% Range 16%-38%

Went on To Take Part?

Skin 60% All 64% Range 26%-73%

Skin Patients

2012 Discussion about taking part in research?

Upper GI 38% All 33% Range 15%-39%

Glad to have been asked?

All 95% no significant difference between cancer types

Would like to have been asked?

Upper GI 54% All 53% Range 47%-64%

2013Saw Information?

Upper GI 86% All 85% Range 78%-88%

Discussion?

Upper GI 35% All 32% Range 16%-38%

Went on To Take Part?

Upper GI 61% All 64% Range 26%-73%

Upper Gastro-intestinal Patients

2012 Discussion about taking part in research?

Urological 15% All 33% Range 15%-39%

Glad to have been asked?

All 95% no significant difference between cancer types

Would like to have been asked?

Urological 47% All 53% Range 47%-64%

2013Saw Information?

Urological 78% All 85% Range 78%-88%

Discussion?

Urological 16% All 32% Range 16%-38%

Went on To Take Part?

Urological 56% All 64% Range 26%-73%

Urology Patients

2012 Discussion about taking part in research?

Other 36% All 33% Range 15%-39%

Glad to have been asked?

All 95% No significant difference between cancer types

Would like to have been asked?

Other 57% All 53% Range 47%-64%

2013Saw Information?

Other 85% All 85% Range 78%-88%

Discussion?

Other 33% All 32% Range 16%-38%

Went on To Take Part?

Other 68% All 64% Range 26%-73%

Other Cancer Patients

Had A Discussion About Research?

2012 All 33% Trusts range 14% - 62%

2013 All 32% range 11% - 62%

2012 - Glad to have been asked?

All 95% range 85% - 100%

2012 - Would like to have been asked?

All 53% range 47% - 64%

2013 - Saw Information?

All 85% range 71% - 95%

2013 - Went on to take part?

All 64% range 37% - 94%

Variations by Trust

Variations by Local Clinical Research Network (LCRN)Saw information on research

21

% r

espo

nse

per

LC

RN

0102030405060708090

100

Variations by LCRN Had a discussion

22

% r

espo

nse

per

LC

RN

05

101520253035404550

Variations by LCRNWent on to take part

23

% r

espo

nse

per

LC

RN

52545658606264666870

The Impact of Age

• Nearly a quarter of respondents are over 75

• BUT less likely to be engaged by info about research

• Significantly less likely to have had a discussion and less likely to participate

• BUT, when asked to participate, participation of over-75s is comparable to other groups

• Is this about co-morbidities or assumptions?

• What more can be done to facilitate high quality studies in those tumour groups where opportunities to take part in trials are more limited, if there are treatment/outcome questions for those groups?

• Reflecting on the portfolio balance of this CSG, is there scope for a trial in older patients with this type of cancer (or the most common type of treatment for it)?

• What further analyses would this group like to see from the NCPES data? (Who might do it or fund it?)

Some Questions

Patients are asked to rate their care overall.

• Of those who did not have a discussion about research:

87.2% Rated Their Care Excellent or Very Good • Of those who did have a discussion and did not go on to participate:

90.2% Rated Their Care Excellent or Very Good • Of those who did have a discussion and did go on to participate:

91.9% Rated Their Care Excellent or Very Good

This is highly statistically significant.

Research Participation and Quality of Care

27

Why not add a photo to your presentation?

28

Why not add a photo to your presentation?

Quality Health, Dr Reg Race

SPADE (consumer-led Strategic PPI Advice, Delivery and Evaluation panel)

Communications at NIHR CRN Coordinating Centre

NIHR CRN:Cancer NCPES Working Group:

Consumers, Researchers, NCIN and NIHR CRN:Cancer

Special thanks to Professor Robert West for analyses

Working group chaired by Carolyn Morris carolynmorris@gmail.com

NCPES: Acknowledgements & Thanks