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Cancer Patients’ Experience of Research Findings and Opportunities From NCPES (National Cancer Patient Experience Survey). Analyses In National Report. The report gives analyses by: Type of cancer Patient Demographics Individual Trust Region

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Cancer Patients’ Experience of ResearchFindings and Opportunities From NCPES (National Cancer Patient Experience Survey)

analyses in national report
Analyses In National Report

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

3 questions about research 2012
3 Questions about Research2012

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 research 2013
3 Questions about Research2013
  • 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%

variations in responses to research questions
Variations in Responses to Research Questions
  • By Type of Cancer
  • By Trust
  • By Local Clinical Research Network (LCRN)
  • By Patient Demographics
breast patients
Breast Patients

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%

colorectal lower gastro intestinal patients
Colorectal/ Lower Gastro-intestinal 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%

lung patients
Lung 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%

prostate patients
Prostate 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%

2013

Saw 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%

brain cns patients
Brain/ CNS 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%

2013

Saw 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%

gynaecology patients
Gynaecology 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%

2013

Saw 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%

haematology patients
Haematology 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%

2013

Saw 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%

head and neck patients
Head and Neck 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%

2013

Saw 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%

sarcoma patients
Sarcoma 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%

2013

Saw 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%

skin patients
Skin 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%

2013

Saw 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%

upper gastro intestinal patients
Upper Gastro-intestinal 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%

2013

Saw 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%

urology patients
Urology 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%

2013

Saw 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%

other cancer patients
Other Cancer 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%

2013

Saw 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%

variations by trust
Variations by Trust

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%

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

% response per LCRN

21

the impact of age
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?
some questions
Some Questions
  • 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?)
research participation and quality of care
Research Participation and Quality of Care

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.

ncpes acknowledgements thanks
NCPES: Acknowledgements & Thanks

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 [email protected]

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