Cancer in english prisons: A mixed-methods study of diagnosis, treatment, care costs and patient and staff experiences

Elizabeth A. Davies; Margreet Lüchtenborg; Rachael Maree Hunter; Renske Visser; Jennie Huynh; Ross Pow; Emma Plugge; Rachel M. Taylor; Jo Armes

doi:10.3310/HYRT9622

Cancer in english prisons: A mixed-methods study of diagnosis, treatment, care costs and patient and staff experiences

Elizabeth A. Davies^*, Margreet Lüchtenborg, Rachael Maree Hunter, Renske Visser, Jennie Huynh, Ross Pow, Emma Plugge, Rachel M. Taylor, Jo Armes

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

Abstract

Background: The increasing size of the ageing English prison population means that non-communicable diseases such as cancer are being more commonly diagnosed in this setting. Little research has so far considered the incidence of cancer in the English prison population, the treatment patients receive when they are diagnosed in a prison setting, their care costs and outcomes or their experiences of care compared with those of people diagnosed in the general population. This is the first mixed-methods study that has been designed to investigate these issues in order to inform recommendations for cancer practice, policy and research in English prisons. Methods: We compared cancer diagnoses made in prison between 1998 and 2017 with those made in the general population using a cohort comparison. We then used a cohort comparison approach to patients’ treatment, survival, care experiences and costs of care between 2012 and 2017. We also conducted qualitative interviews with 24 patients diagnosed or treated in prison, and 6 custodial staff, 16 prison health professionals and 9 cancer professionals. Findings were presented to senior prison and cancer stakeholders at a Policy Lab event to agree priority recommendations. Results: By 2017 cancer incidence in prison had increased from lower levels than in the general population to similar levels. Men in prison developed similar cancers to men outside, while women in prison were more likely than women outside to be diagnosed with preinvasive cervical cancer. In the comparative cohort study patients diagnosed in prison were less likely to undergo curative treatment, particularly surgery, and had a small but significantly increased risk of death. They also had fewer but slightly longer emergency hospital admissions, lower outpatient costs and fewer planned inpatient stays. While secondary care costs were lower for patients in prison, when security escorts costs were added, emergency care and total costs were higher. Control and choice, communication, and care and custody emerged as key issues from the qualitative interviews. People in prison followed a similar diagnostic pathway to those in the general population but experienced barriers arising from lower health literacy, a complex process for booking general practitioner appointments, communication issues between prison staff, surgical, radiotherapy and oncology clinicians and a lack of involvement of their family and friends in their care. These issues were reflected in patient experience survey results routinely collected as part of the annual National Cancer Patient Experience Survey. The four priorities developed and agreed at the Policy Lab event were giving clinical teams a better understanding of the prison system, co-ordinating and promoting national cancer screening programmes, developing ‘health champions’ in prison and raising health literacy and awareness of cancer symptoms among people in prison. Limitations: We could not identify patients who had been diagnosed with cancer before entering prison. Conclusion: Healthcare practices and policies both within prisons and between prisons and NHS hospitals need to be improved in a range of ways if the cancer care received by people in prison is to match that received by the general population.

Original language	English
Journal	Health and social care delivery research
Volume	13
Issue number	3
DOIs	https://doi.org/10.3310/HYRT9622
Publication status	Published - Feb 2025

Keywords

CANCER EPIDEMIOLOGY
COHORT COMPARISON STUDY
COST OF CARE STUDY
PATIENT EXPERIENCE OF CANCER CARE
PRISON HEALTHCARE
QUALITATIVE INTERVIEW STUDY

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.3310/HYRT9622

Cite this

@article{2a1e36b098cb43199a7c657aed3938ae,

title = "Cancer in english prisons: A mixed-methods study of diagnosis, treatment, care costs and patient and staff experiences",

abstract = "Background: The increasing size of the ageing English prison population means that non-communicable diseases such as cancer are being more commonly diagnosed in this setting. Little research has so far considered the incidence of cancer in the English prison population, the treatment patients receive when they are diagnosed in a prison setting, their care costs and outcomes or their experiences of care compared with those of people diagnosed in the general population. This is the first mixed-methods study that has been designed to investigate these issues in order to inform recommendations for cancer practice, policy and research in English prisons. Methods: We compared cancer diagnoses made in prison between 1998 and 2017 with those made in the general population using a cohort comparison. We then used a cohort comparison approach to patients{\textquoteright} treatment, survival, care experiences and costs of care between 2012 and 2017. We also conducted qualitative interviews with 24 patients diagnosed or treated in prison, and 6 custodial staff, 16 prison health professionals and 9 cancer professionals. Findings were presented to senior prison and cancer stakeholders at a Policy Lab event to agree priority recommendations. Results: By 2017 cancer incidence in prison had increased from lower levels than in the general population to similar levels. Men in prison developed similar cancers to men outside, while women in prison were more likely than women outside to be diagnosed with preinvasive cervical cancer. In the comparative cohort study patients diagnosed in prison were less likely to undergo curative treatment, particularly surgery, and had a small but significantly increased risk of death. They also had fewer but slightly longer emergency hospital admissions, lower outpatient costs and fewer planned inpatient stays. While secondary care costs were lower for patients in prison, when security escorts costs were added, emergency care and total costs were higher. Control and choice, communication, and care and custody emerged as key issues from the qualitative interviews. People in prison followed a similar diagnostic pathway to those in the general population but experienced barriers arising from lower health literacy, a complex process for booking general practitioner appointments, communication issues between prison staff, surgical, radiotherapy and oncology clinicians and a lack of involvement of their family and friends in their care. These issues were reflected in patient experience survey results routinely collected as part of the annual National Cancer Patient Experience Survey. The four priorities developed and agreed at the Policy Lab event were giving clinical teams a better understanding of the prison system, co-ordinating and promoting national cancer screening programmes, developing {\textquoteleft}health champions{\textquoteright} in prison and raising health literacy and awareness of cancer symptoms among people in prison. Limitations: We could not identify patients who had been diagnosed with cancer before entering prison. Conclusion: Healthcare practices and policies both within prisons and between prisons and NHS hospitals need to be improved in a range of ways if the cancer care received by people in prison is to match that received by the general population.",

keywords = "CANCER EPIDEMIOLOGY, COHORT COMPARISON STUDY, COST OF CARE STUDY, PATIENT EXPERIENCE OF CANCER CARE, PRISON HEALTHCARE, QUALITATIVE INTERVIEW STUDY",

author = "Davies, {Elizabeth A.} and Margreet L{\"u}chtenborg and Hunter, {Rachael Maree} and Renske Visser and Jennie Huynh and Ross Pow and Emma Plugge and Taylor, {Rachel M.} and Jo Armes",

year = "2025",

month = feb,

doi = "10.3310/HYRT9622",

language = "English",

volume = "13",

journal = "Health and social care delivery research",

issn = "2755-0060",

publisher = "NIHR Journals Library",

number = "3",

}

TY - JOUR

T1 - Cancer in english prisons

T2 - A mixed-methods study of diagnosis, treatment, care costs and patient and staff experiences

AU - Davies, Elizabeth A.

AU - Lüchtenborg, Margreet

AU - Hunter, Rachael Maree

AU - Visser, Renske

AU - Huynh, Jennie

AU - Pow, Ross

AU - Plugge, Emma

AU - Taylor, Rachel M.

AU - Armes, Jo

PY - 2025/2

Y1 - 2025/2

N2 - Background: The increasing size of the ageing English prison population means that non-communicable diseases such as cancer are being more commonly diagnosed in this setting. Little research has so far considered the incidence of cancer in the English prison population, the treatment patients receive when they are diagnosed in a prison setting, their care costs and outcomes or their experiences of care compared with those of people diagnosed in the general population. This is the first mixed-methods study that has been designed to investigate these issues in order to inform recommendations for cancer practice, policy and research in English prisons. Methods: We compared cancer diagnoses made in prison between 1998 and 2017 with those made in the general population using a cohort comparison. We then used a cohort comparison approach to patients’ treatment, survival, care experiences and costs of care between 2012 and 2017. We also conducted qualitative interviews with 24 patients diagnosed or treated in prison, and 6 custodial staff, 16 prison health professionals and 9 cancer professionals. Findings were presented to senior prison and cancer stakeholders at a Policy Lab event to agree priority recommendations. Results: By 2017 cancer incidence in prison had increased from lower levels than in the general population to similar levels. Men in prison developed similar cancers to men outside, while women in prison were more likely than women outside to be diagnosed with preinvasive cervical cancer. In the comparative cohort study patients diagnosed in prison were less likely to undergo curative treatment, particularly surgery, and had a small but significantly increased risk of death. They also had fewer but slightly longer emergency hospital admissions, lower outpatient costs and fewer planned inpatient stays. While secondary care costs were lower for patients in prison, when security escorts costs were added, emergency care and total costs were higher. Control and choice, communication, and care and custody emerged as key issues from the qualitative interviews. People in prison followed a similar diagnostic pathway to those in the general population but experienced barriers arising from lower health literacy, a complex process for booking general practitioner appointments, communication issues between prison staff, surgical, radiotherapy and oncology clinicians and a lack of involvement of their family and friends in their care. These issues were reflected in patient experience survey results routinely collected as part of the annual National Cancer Patient Experience Survey. The four priorities developed and agreed at the Policy Lab event were giving clinical teams a better understanding of the prison system, co-ordinating and promoting national cancer screening programmes, developing ‘health champions’ in prison and raising health literacy and awareness of cancer symptoms among people in prison. Limitations: We could not identify patients who had been diagnosed with cancer before entering prison. Conclusion: Healthcare practices and policies both within prisons and between prisons and NHS hospitals need to be improved in a range of ways if the cancer care received by people in prison is to match that received by the general population.

AB - Background: The increasing size of the ageing English prison population means that non-communicable diseases such as cancer are being more commonly diagnosed in this setting. Little research has so far considered the incidence of cancer in the English prison population, the treatment patients receive when they are diagnosed in a prison setting, their care costs and outcomes or their experiences of care compared with those of people diagnosed in the general population. This is the first mixed-methods study that has been designed to investigate these issues in order to inform recommendations for cancer practice, policy and research in English prisons. Methods: We compared cancer diagnoses made in prison between 1998 and 2017 with those made in the general population using a cohort comparison. We then used a cohort comparison approach to patients’ treatment, survival, care experiences and costs of care between 2012 and 2017. We also conducted qualitative interviews with 24 patients diagnosed or treated in prison, and 6 custodial staff, 16 prison health professionals and 9 cancer professionals. Findings were presented to senior prison and cancer stakeholders at a Policy Lab event to agree priority recommendations. Results: By 2017 cancer incidence in prison had increased from lower levels than in the general population to similar levels. Men in prison developed similar cancers to men outside, while women in prison were more likely than women outside to be diagnosed with preinvasive cervical cancer. In the comparative cohort study patients diagnosed in prison were less likely to undergo curative treatment, particularly surgery, and had a small but significantly increased risk of death. They also had fewer but slightly longer emergency hospital admissions, lower outpatient costs and fewer planned inpatient stays. While secondary care costs were lower for patients in prison, when security escorts costs were added, emergency care and total costs were higher. Control and choice, communication, and care and custody emerged as key issues from the qualitative interviews. People in prison followed a similar diagnostic pathway to those in the general population but experienced barriers arising from lower health literacy, a complex process for booking general practitioner appointments, communication issues between prison staff, surgical, radiotherapy and oncology clinicians and a lack of involvement of their family and friends in their care. These issues were reflected in patient experience survey results routinely collected as part of the annual National Cancer Patient Experience Survey. The four priorities developed and agreed at the Policy Lab event were giving clinical teams a better understanding of the prison system, co-ordinating and promoting national cancer screening programmes, developing ‘health champions’ in prison and raising health literacy and awareness of cancer symptoms among people in prison. Limitations: We could not identify patients who had been diagnosed with cancer before entering prison. Conclusion: Healthcare practices and policies both within prisons and between prisons and NHS hospitals need to be improved in a range of ways if the cancer care received by people in prison is to match that received by the general population.

KW - CANCER EPIDEMIOLOGY

KW - COHORT COMPARISON STUDY

KW - COST OF CARE STUDY

KW - PATIENT EXPERIENCE OF CANCER CARE

KW - PRISON HEALTHCARE

KW - QUALITATIVE INTERVIEW STUDY

UR - http://www.scopus.com/inward/record.url?scp=85219419675&partnerID=8YFLogxK

U2 - 10.3310/HYRT9622

DO - 10.3310/HYRT9622

M3 - Article

C2 - 39982760

AN - SCOPUS:85219419675

SN - 2755-0060

VL - 13

JO - Health and social care delivery research

JF - Health and social care delivery research

IS - 3

ER -

Cancer in english prisons: A mixed-methods study of diagnosis, treatment, care costs and patient and staff experiences

Abstract

Keywords

UN SDGs

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