Does the cost of cancer care for people in prison differ from those in the general population? Analysis of matched English cancer registry and hospital records.

Background: People in prison experience poorer mental and physical health compared to their peers in the general population. The causes are multi-dimensional ranging from lifestyle factors to poorer access to healthcare. Little is known about cancer in people in prison or how the cost of their care compares to the general population. Methods: Data on people diagnosed with cancer while in English prisons were identified in National Cancer Registration dataset and linked to Hospital Episode Statistics (HES) for the years 2012-2017. General population matched patients were identified using a 1-5 ratio, based on age, gender, year of diagnosis, cancer type and disease stage. Outpatient and inpatient HES data up to six-months from diagnosis were costed using NHS Reference costs and inflated to 2017/2018 costs. Findings: 879 prison and 4326 general population cancer diagnoses were identified in HES. The adjusted six-month cost of cancer care was significantly lower for people in prison (-£1216.95% confidence interval (CI) -1638 to -795), driven by fewer outpatient attendances. However, people diagnosed in prison had higher emergency care costs (£497.95% CI 375-619). Security escorts further increased the total cost of care. Interpretation: Following a cancer diagnosis, people in English prisons have significantly lower planned care costs, but higher emergency care costs and an overall higher cost due to security escorts. Further work is required to identify ways of improving cancer care for people in prisons to ensure it is equivalent to that received by the general population. Funding: National Institute for Health and Social Care Research 16/52/53.

Cancer in prison: barriers and enablers to diagnosis and treatment.

Background: Approximately 82,000 people are in prison annually in England and Wales. Limited research has investigated cancer in this population and none has explored experiences of imprisoned people with cancer. This study aimed to address this gap. Methods: We conducted 55 semi-structured, qualitative, audio-recorded interviews with: imprisoned people with cancer (n = 24), custodial staff (n = 6), prison healthcare staff (n = 16) and oncology specialists (n = 9). Data were collected 07/10/2019-20/03/2020. Patients were recruited by prison healthcare staff and interviews were conducted face-to-face. Professionals were recruited via professional networks and interviews were conducted face-to-face or via telephone. Transcribed interviews were analysed using reflexive thematic analysis. We also analysed relevant National Cancer Patient Experience Survey (NCPES) questions for those diagnosed in prison (n = 78) and in the general population (n = 390). Findings: Our findings highlight the complexities of cancer care for imprisoned people. We identified three core themes: control and choice, communication, and care and custody. Whilst people in prison follow a similar diagnostic pathway to those in the community, additional barriers to diagnosis exist including health literacy, the General Practitioner appointment booking system and communication between prison and oncology staff. Tensions between control and choice in prison impacted aspects of cancer care experience such as symptom management and accessing cancer information. NCPES results supported the qualitative findings and showed people in prison reported significantly poorer experiences than in the general population. Interpretation: Our findings demonstrate the complexity of cancer care in custodial settings, identifying barriers and enablers to equitable cancer care provision and offering insights on how to improve care for this population. Funding: National Institute for Health and Social Care Research Delivery Research Programme 16/52/53 and Strategic Priorities Fund 2019/20 Research England via University of Surrey.

Cancer incidence, treatment, and survival in the prison population compared with the general population in England: a population-based, matched cohort study.

BACKGROUND: The growing and ageing prison population in England makes accurate cancer data of increasing importance for prison health policies. This study aimed to compare cancer incidence, treatment, and survival between patients diagnosed in prison and the general population. METHODS: In this population-based, matched cohort study, we used cancer registration data from the National Cancer Registration and Analysis Service in England to identify primary invasive cancers and cervical cancers in situ diagnosed in adults (aged ≥18 years) in the prison and general populations between Jan 1, 1998, and Dec 31, 2017. Ministry of Justice and Office for National Statistics population data for England were used to calculate age-standardised incidence rates (ASIR) per year and age-standardised incidence rate ratios (ASIRR) for the 20-year period. Patients diagnosed with primary invasive cancers (ie, excluding cervical cancers in situ) in prison between Jan 1, 2012, and Dec 31, 2017 were matched to individuals from the general population and linked to hospital and treatment datasets. Matching was done in a 1:5 ratio according to 5-year age group, gender, diagnosis year, cancer site, and disease stage. Our primary objectives were to compare the incidence of cancer (1998-2017); the receipt of treatment with curative intent (2012-17 matched cohort), using logistic regression adjusted for matching variables (excluding cancer site) and route to diagnosis; and overall survival following cancer diagnosis (2012-17 matched cohort), using a Cox proportional hazards model adjusted for matching variables (excluding cancer site) and route to diagnosis, with stratification for the receipt of any treatment with curative intent. FINDINGS: We identified 2015 incident cancers among 1964 adults (1556 [77·2%] men and 459 [22·8%] women) in English prisons in the 20-year period up to Dec 31, 2017. The ASIR for cancer for men in prison was initially lower than for men in the general population (in 1998, ASIR 119·33 per 100 000 person-years [95% CI 48·59-219·16] vs 746·97 per 100 000 person-years [742·31-751·66]), but increased to a similar level towards the end of the study period (in 2017, 856·85 per 100 000 person-years [675·12-1060·44] vs 788·59 per 100 000 person-years [784·62-792·57]). For women, the invasive cancer incidence rate was low and so ASIR was not reported for this group. Over the 20-year period, the incidence of invasive cancer for men in prison increased (incidence rate ratio per year, 1·05 [95% CI 1·04-1·06], during 1999-2017 compared with 1998). ASIRRs showed that over the 20-year period, overall cancer incidence was lower in men in prison than in men in the general population (ASIRR 0·76 [95% CI 0·73-0·80]). The difference was not statistically significant for women (ASIRR 0·83 [0·68-1·00]). Between Jan 1, 2012, and Dec 31, 2017, patients diagnosed in prison were less likely to undergo curative treatment than matched patients in the general population (274 [32·3%] of 847 patients vs 1728 [41·5%] of 4165; adjusted odds ratio (OR) 0·72 [95% CI 0·60-0·85]). Being diagnosed in prison was associated with a significantly increased risk of death on adjustment for matching variables (347 deaths during 2021·9 person-years in the prison cohort vs 1626 deaths during 10 944·2 person-years in the general population; adjusted HR 1·16 [95% CI 1·03-1·30]); this association was partly explained by stratification by curative treatment and further adjustment for diagnosis route (adjusted HR 1·05 [0·93-1·18]). INTERPRETATION: Cancer incidence increased in people in prisons in England between 1998 and 2017, with patients in prison less likely to receive curative treatments and having lower overall survival than the general population. The association with survival was partly explained by accounting for differences in receipt of curative treatment and adjustment for diagnosis route. Improved routine cancer surveillance is needed to inform prison cancer policies and decrease inequalities for this under-researched population. FUNDING: UK National Institute for Health and Care Research, King's College London, and Strategic Priorities Fund 2019/20 of Research England via the University of Surrey.

Going paper-lite: housebound patient perspectives on the introduction of mobile working.

Healthcare policies promote technology use as a means to modernise healthcare and support seamless, person-centred care. However, despite information technology (IT) use being common practice in clinical settings, its use in patients' homes is still developing. This study explored patients' perspectives on the use of IT and electronic health records (EHR) in their home environment. Semi structured interviews were conducted with housebound patients who received regular care from the district nursing team, and thematic data analysis was undertaken. Participants reported variable knowledge and experiences with mobile working and EHR. Most were positive and identified clear benefits for clinicians. However, few participants reported benefits to themselves. Contrary to popular belief, IT use is expected by older patients and, while barriers were identified, the overall opinion was positive. A digital divide was apparent, with some at risk of being disadvantaged by the increasing use of technology.

Collaboration with people with lived experience of prison: reflections on researching cancer care in custodial settings.

BACKGROUND: Patient and public involvement is increasingly considered important in health research. This paper reflects, from both academic and lived experience perspectives, on involving people with lived experience in a study exploring cancer care in prison and how by doing this it enriched the research process. METHODS: This paper is based on written and verbal reflections of the lived experience researchers and academic researchers involved in a study exploring the diagnosis and treatment of people with cancer in prison. The study comprised interviews with people with cancer in prison, prison healthcare staff, oncology specialists and custodial staff. Lived experience researchers were involved throughout the research process, including co-conducting interviews with patients and analysing interviews. RESULTS: This paper highlights the importance and value of including lived experience researchers across the research process. We reflect on how lived experience of prison shapes the experience of conducting interviews and analysing data gathered in prison. We reflect on the working relationships between academic and lived experience researchers. We demonstrate how prison research is challenging, but collaboration between lived experience and academic researchers can help to better prepare for the field, to ask more meaningful questions and to create rapport with participants. These types of collaborations can be powerful avenues for skill development for both academic and lived experience researchers, but they require an investment of time and a willingness for shared learning. CONCLUSIONS: For academics and lived experience researchers to collaborate successfully and meaningfully care needs to be taken to develop open, honest and equal working relationships. Skills development for academic and lived experience researchers is important. A commitment to building and maintaining relationships is crucial. Having a third party as a mediator can facilitate and foster these relationships. Particularly with people with lived experience of prison it is essential to put the 'do no harm' principle into practice and to have support in place to minimise this.

While patient and public involvement is increasingly considered important in health research, very few papers reflect on the process of collaborating with people with lived experience of prison in health research. This paper is based on written and verbal reflections of both the lived experience and academic researchers on the project that explored how cancer is diagnosed and treated in prison. For academics and lived experience researchers to collaborate successfully and meaningfully care needs to be taken to develop open, honest and equal working relationships. Skills development for academic and lived experience researchers is important. A commitment to building and maintaining relationships is crucial. Having a third party as a mediator can facilitate and foster these relationships. Particularly with people with lived experience of prison it is essential to put the 'do no harm' principle into practice and to have support in place to minimise this. The process of writing this paper provided additional opportunities to reflect on the collaboration which we all found vital. Involving lived experience researchers on all aspects of the research process can strengthen the design, relevancy and outcomes of studies. The process, however, can be emotionally challenging for lived experience and academic researchers, underscoring the need for space for open and honest reflection and learning. Particularly for people with lived experience of prison, being involved in research studies can be a great source of personal growth as it offers an opportunity to use and reframe their, often traumatic, lived experience in a positive way.

The Overlap Between Geriatric Medicine and Palliative Care: A Scoping Literature Review.

With an increasing aging population worldwide, there is a growing need for both palliative care and geriatric medicine. It is presumed in medical literature that both specialties share similar goals about patient care and could collaborate. To inform future service development, the objective of this review was to identify what is currently empirically known about overlapping working practices. This article provides a scoping literature review on the relationship between geriatric medicine and palliative care within the United Kingdom. The review encompassed literature written between 1997 and 2019 accessed via Scopus, Web of Science, PubMed, and Google Scholar. Three themes were identified: (a) unclear boundaries between specialties, (b) communication within and between specialisms, and (c) ambiguity of how older people fit in the current health care system. We suggest that more empirical research is conducted about the overlap between palliative care and geriatric medicine to understand how interprofessional working and patient care can be improved.

Growing older in secure mental health care: the user experience.

BACKGROUND: The proportion of older adults using secure forensic psychiatric services is rising. Research is needed to examine the experience of older service users and evidence how adult services can adapt to meet their needs. AIM: To explore user experiences of being an older adult in secure forensic services. METHODS: Thematic analysis of interviews and observations of weekly routines conducted with fifteen service users aged 50 and over residing in a low and medium secure NHS unit in England. RESULTS: User experiences of ageing and age-related needs are reported using five themes: age-related identities; ward environments; participation in activities; management of physical health; and ageing futures. Older adults living with people their own age reported more social integration than those on wards dominated by younger adults. Most wished to self-manage their physical health needs with the support of primary care staff. Older adults were reluctant to identify as "old" or "vulnerable". Some older adults downplayed their changing care needs. CONCLUSIONS: Placement of older people in adult secure services requires awareness of the age balance of the ward. A culture of inclusivity, sensitivity and respect for older persons' agency is key to collaboratively meeting additional care needs and discharge planning.

Mental health and offending in older people: Future directions for research.

BACKGROUND: The number of older people and their proportion of the prison population in high-income countries is increasing substantially. This pattern is mirrored by the age profile in forensic hospital services, and both trends seem counter to the age-crime curve concept. How do we understand this and what are the mental health needs of this growing group? AIM: The aim of this review is to identify existing research robust enough to inform policy and practice in relation to mental health in older offenders and the knowledge gaps that should drive future research. METHODS: A keyword-based search strategy of the databases Embase, PsychINFO, Medline, and grey literature 2008-2018. Article selection was limited to empirical research with the potential to inform policy or practice and findings synthesised narratively. RESULTS: Much of the research in this field focuses on prevalence and the increased psychiatric morbidity of the older offender population. Older prisoners and those older patients in secure hospitals have needs that differ in some respects from their younger counterparts and community-dwelling older people. There are few studies of interventions for mental health in older prisoners or into the challenges of timely release given their complex needs. Discharge of older individuals from secure settings is also an area where further research is required in order to inform policy and service provision. CONCLUSIONS: The older population in prisons and secure settings is growing, and there is much concern as to how far facilities and services have been able to identify and meet the mental health needs of those of older age. Cooperation between researchers and services and between disciplines will be essential if we are to secure a more robust evidence base in this respect. Engaging service users in such research and considering the whole criminal justice pathway including diversion remains a priority.

"Doing death": Reflecting on the researcher's subjectivity and emotions.

Given that death is a universal concept, the idea that a researcher must be objective when studying this topic is common place and problematic. Thus, this article adds to the literature by discussing the complexity of subjectivity within death studies. Three key elements of subjectivity form the basis of this discussion: (a) the researcher's cultural background, (b) the researcher's personal experiences, and (c) the emotional impact of research on the researcher. It is argued that transparency about the subjective nature of death studies research can be fruitful in understanding the research process before, during, and after fieldwork.