Background: There is evidence that people with intellectual disabilities experience healthcare in... more Background: There is evidence that people with intellectual disabilities experience healthcare inequalities, including access to specialist palliative care, but to date, there has not been a systematic review of empirical evidence. Aim: To identify the palliative care needs of adults with intellectual disabilities and the barriers and facilitators they face in accessing palliative care. Design: Systematic review using a narrative synthesis approach (International prospective register of systematic reviews (PROSPERO) registration number: CRD42019138974). Data sources: Five databases were searched in June 2019 (MEDLINE, Embase, PsycINFO, the Cochrane library and CINAHL) along with hand searches and a search of the grey literature. All study designs were included. Results: A total of 52 studies were identified, all of which were conducted in high-income countries, the majority in the United Kingdom ( n = 28). From a total of 2970 participants across all studies, only 1% were people wit...
Journal of Applied Research in Intellectual Disabilities, 2020
BackgroundPopulation‐based data are presented on the nature of dying in intellectual disability s... more BackgroundPopulation‐based data are presented on the nature of dying in intellectual disability services.MethodsA retrospective survey was conducted over 18 months with a sample of UK‐based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES‐SF.ResultsThe observed death was 12.2 deaths per 1,000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life.ConclusionDeath is not a common event in intellectual disability services. A major disadvantage experienced by people with intellectual disabilities was that their deaths were relatively unanticipated. People with intellectual disabilities living in supported living settings, even when the...
BackgroundAdults with intellectual disability (ID) experience inequality in access to healthcare ... more BackgroundAdults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown.AimTo describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population.DesignNationwide population-based postbereavement survey.Participants38 ID care providers took part in the study. The supported over 13 000 people with ID. Over the 18-month period of data collection, 222 deaths were reported. The survey was completed, by care staff, for 157 (70.7%) of those deaths.ResultsDecedents had complex health, functional and behavioural needs. Death was unanticipated in a high proportion of cases. Quality of care provided across care settings was generally well rated. However, hospital care and care provided at the time of wa...
Chronic kidney disease (CKD) requires patients and caregivers to invest in self-care and self-man... more Chronic kidney disease (CKD) requires patients and caregivers to invest in self-care and self-management of their disease. We aimed to describe the for adult patients that follows from these investments and develop an understanding of burden of treatment (BoT). Systematic review of qualitative primary studies that builds on EXPERTS1 Protocol, PROSPERO registration number: CRD42014014547. We included research published in English, Spanish and Portuguese, from 2000 to present, describing experience of illness and healthcare of people with CKD and caregivers. Searches were conducted in MEDLINE, Embase, CINAHL Plus, PsycINFO, Scopus, Scientific Electronic Library Online and Red de Revistas Científicas de América Latina y el Caribe, España y Portugal. Content was analysed with theoretical framework using middle-range theories. Searches resulted in 260 studies from 30 countries (5115 patients and 1071 carers). Socioeconomic status was central to the experience of CKD, especially in its ad...
With over 1 million HIV-related deaths annually, quality end-of-life care remains a priority. Giv... more With over 1 million HIV-related deaths annually, quality end-of-life care remains a priority. Given strong public preference for home death, place of death is an important consideration for quality care. This 11 country study aimed to i) describe the number, proportion of all deaths, and demographics of HIV-related deaths; ii) identify place of death; iii) compare place of death to cancer patients iv), determine patient/health system factors associated with place of HIV-related death. In this retrospective analysis of death certification, data were extracted for the full population (ICD-10 codes B20-B24) for 1-year period: deceased's demographic characteristics, place of death, healthcare supply. i) 19,739 deaths were attributed to HIV. The highest proportion (per 1000 deaths) was for Mexico (9.8‰), and the lowest Sweden (0.2‰). The majority of deaths were among men (75%), and those aged <50 (69.1%). ii) Hospital was most common place of death in all countries: from 56.6% in ...
NPJ primary care respiratory medicine, Mar 3, 2017
Chronic obstructive pulmonary disease and lung cancer are leading causes of death with comparable... more Chronic obstructive pulmonary disease and lung cancer are leading causes of death with comparable symptoms at the end of life. Cross-national comparisons of place of death, as an important outcome of terminal care, between people dying from chronic obstructive pulmonary disease and lung cancer have not been studied before. We collected population death certificate data from 14 countries (year: 2008), covering place of death, underlying cause of death, and demographic information. We included patients dying from lung cancer or chronic obstructive pulmonary disease and used descriptive statistics and multivariable logistic regressions to describe patterns in place of death. Of 5,568,827 deaths, 5.8% were from lung cancer and 4.4% from chronic obstructive pulmonary disease. Among lung cancer decedents, home deaths ranged from 12.5% in South Korea to 57.1% in Mexico, while hospital deaths ranged from 27.5% in New Zealand to 77.4% in France. In chronic obstructive pulmonary disease patie...
Chronic obstructive pulmonary disease (COPD) is a chronic life-limiting disorder characterised by... more Chronic obstructive pulmonary disease (COPD) is a chronic life-limiting disorder characterised by persistent airflow obstruction and progressive breathlessness. Discussions/conversations between patients and clinicians ensure palliative care plans are grounded in patients' preferences. This systematic review aimed to explore what is known about palliative care conversations between clinicians and COPD patients. A comprehensive search of all major healthcare-related databases and websites was performed following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Studies were quality assessed, employing widely used quality-assessment tools, with only papers scoring moderate-to-high quality included. All relevant data were extracted. A narrative synthesis was used to analyse, process and present the final data. The findings indicated that the frequency and quality of palliative care conversations is generally poor. Patients and physicians identi...
Quality of cancer care may greatly impact on patients' health-related quality of life (HRQoL)... more Quality of cancer care may greatly impact on patients' health-related quality of life (HRQoL). Free-text responses to patient-reported outcome measures (PROMs) provide rich data but analysis is time and resource-intensive. This study developed and tested a learning-based text-mining approach to facilitate analysis of patients' experiences of care and develop an explanatory model illustrating impact on HRQoL. Respondents to a population-based survey of colorectal cancer survivors provided free-text comments regarding their experience of living with and beyond cancer. An existing coding framework was tested and adapted, which informed learning-based text mining of the data. Machine-learning algorithms were trained to identify comments relating to patients' specific experiences of service quality, which were verified by manual qualitative analysis. Comparisons between coded retrieved comments and a HRQoL measure (EQ5D) were explored. The survey response rate was 63.3% (21 8...
Increasing numbers of the population are living with long-term life-limiting conditions with a si... more Increasing numbers of the population are living with long-term life-limiting conditions with a significant proportion characterised by multimorbidity. Patients with these conditions often experience high volumes of clinical interaction involving them, their caregivers and healthcare providers in complex patterns of organising, coordinating, negotiating and managing care. A better understanding of the sources of experienced complexity and multimorbidity, from the patient perspective is paramount to improve capacity and manage workload to promote improved experience of illness, more effective healthcare utilisation and improved healthcare outcomes. To better understand the sources of complexity we will undertake an evidence synthesis of qualitative studies of patient and informal carer experiences of three common long-term life-limiting conditions. We will investigate what is known about these diseases at different stages in disease progression, treatment regimens and places of care. ...
Journal of clinical oncology : official journal of the American Society of Clinical Oncology, Jan 5, 2015
This population-level study was conducted to define the health-related quality of life (HRQL) of ... more This population-level study was conducted to define the health-related quality of life (HRQL) of individuals living with and beyond colorectal cancer (CRC) and to identify factors associated with poor health outcomes. All individuals diagnosed with CRC in England in 2010 and 2011 who were alive 12 to 36 months after diagnosis were sent a questionnaire. This included questions related to treatment, disease status, other long-term conditions (LTCs), generic HRQL (EuroQol-5D), and cancer-specific outcomes (Functional Assessment of Cancer Therapy and Social Difficulties Inventory items). The response rate was 63.3% (21,802 of 34,467 patients). One or more generic health problems were reported by 65% of respondents, with 10% of patients reporting problems in all five domains. The reporting of problems was higher than in the general population and was most marked in those age less than 55 years. Certain subgroups reported a higher number of problems, notably those with one or more other L...
Dame Cicely Saunders dated the beginning of what she called &amp;#x27;the modern hospice move... more Dame Cicely Saunders dated the beginning of what she called &amp;#x27;the modern hospice movement&amp;#x27;to the opening of St Christopher&amp;#x27;s Hospice in 1967 (1). Clark argues that it is more accurate to see the opening of St Christopher&amp;#x27;s as a &amp;#x27;crucial outcome of ideas and ...
Background/aim: Health policy places emphasis on enabling patients to die in their place of choic... more Background/aim: Health policy places emphasis on enabling patients to die in their place of choice, and increasing the proportion of home deaths. In this article, we seek to explore reported preferences for place of death and experiences of care in a population-based sample of deaths from all causes. Design: Self-completion post-bereavement survey. Setting/Participants: Census of deaths registered in two health districts between October 2009 and April 2010. Views of Informal Carers – Evaluation of Services Short Form was sent to each informant (n = 1422; usually bereaved relative) 6–12 months post-bereavement. Results: Response was 33%. In all, 35.7% of respondents reported that the deceased said where they wanted to die, and 49.3% of these were reported to achieve this. Whilist 73.9% of those who were reported to have a preference cited home as the preferred place, only 13.3% of the sample died at home. Cancer patients were more likely to be reported to achieve preferences than patients with other conditions (p &lt; .01). Being reported to have a record of preferences for place of death increased the likelihood of dying at home (odds ratio = 22.10). When rating care in the last 2 days, respondents were more likely to rate ‘excellent’ or ‘good’ for nursing care (p &lt; .01), relief of pain (p &lt; .01) and other symptoms (p &lt; .01), emotional support (p &lt; .01) and privacy of patient’s environment (p &lt; .01) if their relative died in their preferred place. Conclusions: More work is needed to encourage people to talk about their preferences at the end of life: this should not be restricted to those known to be dying. Increasing knowledge and achievement of preferences for place of death may also improve end-of-life care.
Background: There is evidence that people with intellectual disabilities experience healthcare in... more Background: There is evidence that people with intellectual disabilities experience healthcare inequalities, including access to specialist palliative care, but to date, there has not been a systematic review of empirical evidence. Aim: To identify the palliative care needs of adults with intellectual disabilities and the barriers and facilitators they face in accessing palliative care. Design: Systematic review using a narrative synthesis approach (International prospective register of systematic reviews (PROSPERO) registration number: CRD42019138974). Data sources: Five databases were searched in June 2019 (MEDLINE, Embase, PsycINFO, the Cochrane library and CINAHL) along with hand searches and a search of the grey literature. All study designs were included. Results: A total of 52 studies were identified, all of which were conducted in high-income countries, the majority in the United Kingdom ( n = 28). From a total of 2970 participants across all studies, only 1% were people wit...
Journal of Applied Research in Intellectual Disabilities, 2020
BackgroundPopulation‐based data are presented on the nature of dying in intellectual disability s... more BackgroundPopulation‐based data are presented on the nature of dying in intellectual disability services.MethodsA retrospective survey was conducted over 18 months with a sample of UK‐based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES‐SF.ResultsThe observed death was 12.2 deaths per 1,000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life.ConclusionDeath is not a common event in intellectual disability services. A major disadvantage experienced by people with intellectual disabilities was that their deaths were relatively unanticipated. People with intellectual disabilities living in supported living settings, even when the...
BackgroundAdults with intellectual disability (ID) experience inequality in access to healthcare ... more BackgroundAdults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown.AimTo describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population.DesignNationwide population-based postbereavement survey.Participants38 ID care providers took part in the study. The supported over 13 000 people with ID. Over the 18-month period of data collection, 222 deaths were reported. The survey was completed, by care staff, for 157 (70.7%) of those deaths.ResultsDecedents had complex health, functional and behavioural needs. Death was unanticipated in a high proportion of cases. Quality of care provided across care settings was generally well rated. However, hospital care and care provided at the time of wa...
Chronic kidney disease (CKD) requires patients and caregivers to invest in self-care and self-man... more Chronic kidney disease (CKD) requires patients and caregivers to invest in self-care and self-management of their disease. We aimed to describe the for adult patients that follows from these investments and develop an understanding of burden of treatment (BoT). Systematic review of qualitative primary studies that builds on EXPERTS1 Protocol, PROSPERO registration number: CRD42014014547. We included research published in English, Spanish and Portuguese, from 2000 to present, describing experience of illness and healthcare of people with CKD and caregivers. Searches were conducted in MEDLINE, Embase, CINAHL Plus, PsycINFO, Scopus, Scientific Electronic Library Online and Red de Revistas Científicas de América Latina y el Caribe, España y Portugal. Content was analysed with theoretical framework using middle-range theories. Searches resulted in 260 studies from 30 countries (5115 patients and 1071 carers). Socioeconomic status was central to the experience of CKD, especially in its ad...
With over 1 million HIV-related deaths annually, quality end-of-life care remains a priority. Giv... more With over 1 million HIV-related deaths annually, quality end-of-life care remains a priority. Given strong public preference for home death, place of death is an important consideration for quality care. This 11 country study aimed to i) describe the number, proportion of all deaths, and demographics of HIV-related deaths; ii) identify place of death; iii) compare place of death to cancer patients iv), determine patient/health system factors associated with place of HIV-related death. In this retrospective analysis of death certification, data were extracted for the full population (ICD-10 codes B20-B24) for 1-year period: deceased's demographic characteristics, place of death, healthcare supply. i) 19,739 deaths were attributed to HIV. The highest proportion (per 1000 deaths) was for Mexico (9.8‰), and the lowest Sweden (0.2‰). The majority of deaths were among men (75%), and those aged <50 (69.1%). ii) Hospital was most common place of death in all countries: from 56.6% in ...
NPJ primary care respiratory medicine, Mar 3, 2017
Chronic obstructive pulmonary disease and lung cancer are leading causes of death with comparable... more Chronic obstructive pulmonary disease and lung cancer are leading causes of death with comparable symptoms at the end of life. Cross-national comparisons of place of death, as an important outcome of terminal care, between people dying from chronic obstructive pulmonary disease and lung cancer have not been studied before. We collected population death certificate data from 14 countries (year: 2008), covering place of death, underlying cause of death, and demographic information. We included patients dying from lung cancer or chronic obstructive pulmonary disease and used descriptive statistics and multivariable logistic regressions to describe patterns in place of death. Of 5,568,827 deaths, 5.8% were from lung cancer and 4.4% from chronic obstructive pulmonary disease. Among lung cancer decedents, home deaths ranged from 12.5% in South Korea to 57.1% in Mexico, while hospital deaths ranged from 27.5% in New Zealand to 77.4% in France. In chronic obstructive pulmonary disease patie...
Chronic obstructive pulmonary disease (COPD) is a chronic life-limiting disorder characterised by... more Chronic obstructive pulmonary disease (COPD) is a chronic life-limiting disorder characterised by persistent airflow obstruction and progressive breathlessness. Discussions/conversations between patients and clinicians ensure palliative care plans are grounded in patients' preferences. This systematic review aimed to explore what is known about palliative care conversations between clinicians and COPD patients. A comprehensive search of all major healthcare-related databases and websites was performed following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Studies were quality assessed, employing widely used quality-assessment tools, with only papers scoring moderate-to-high quality included. All relevant data were extracted. A narrative synthesis was used to analyse, process and present the final data. The findings indicated that the frequency and quality of palliative care conversations is generally poor. Patients and physicians identi...
Quality of cancer care may greatly impact on patients' health-related quality of life (HRQoL)... more Quality of cancer care may greatly impact on patients' health-related quality of life (HRQoL). Free-text responses to patient-reported outcome measures (PROMs) provide rich data but analysis is time and resource-intensive. This study developed and tested a learning-based text-mining approach to facilitate analysis of patients' experiences of care and develop an explanatory model illustrating impact on HRQoL. Respondents to a population-based survey of colorectal cancer survivors provided free-text comments regarding their experience of living with and beyond cancer. An existing coding framework was tested and adapted, which informed learning-based text mining of the data. Machine-learning algorithms were trained to identify comments relating to patients' specific experiences of service quality, which were verified by manual qualitative analysis. Comparisons between coded retrieved comments and a HRQoL measure (EQ5D) were explored. The survey response rate was 63.3% (21 8...
Increasing numbers of the population are living with long-term life-limiting conditions with a si... more Increasing numbers of the population are living with long-term life-limiting conditions with a significant proportion characterised by multimorbidity. Patients with these conditions often experience high volumes of clinical interaction involving them, their caregivers and healthcare providers in complex patterns of organising, coordinating, negotiating and managing care. A better understanding of the sources of experienced complexity and multimorbidity, from the patient perspective is paramount to improve capacity and manage workload to promote improved experience of illness, more effective healthcare utilisation and improved healthcare outcomes. To better understand the sources of complexity we will undertake an evidence synthesis of qualitative studies of patient and informal carer experiences of three common long-term life-limiting conditions. We will investigate what is known about these diseases at different stages in disease progression, treatment regimens and places of care. ...
Journal of clinical oncology : official journal of the American Society of Clinical Oncology, Jan 5, 2015
This population-level study was conducted to define the health-related quality of life (HRQL) of ... more This population-level study was conducted to define the health-related quality of life (HRQL) of individuals living with and beyond colorectal cancer (CRC) and to identify factors associated with poor health outcomes. All individuals diagnosed with CRC in England in 2010 and 2011 who were alive 12 to 36 months after diagnosis were sent a questionnaire. This included questions related to treatment, disease status, other long-term conditions (LTCs), generic HRQL (EuroQol-5D), and cancer-specific outcomes (Functional Assessment of Cancer Therapy and Social Difficulties Inventory items). The response rate was 63.3% (21,802 of 34,467 patients). One or more generic health problems were reported by 65% of respondents, with 10% of patients reporting problems in all five domains. The reporting of problems was higher than in the general population and was most marked in those age less than 55 years. Certain subgroups reported a higher number of problems, notably those with one or more other L...
Dame Cicely Saunders dated the beginning of what she called &amp;#x27;the modern hospice move... more Dame Cicely Saunders dated the beginning of what she called &amp;#x27;the modern hospice movement&amp;#x27;to the opening of St Christopher&amp;#x27;s Hospice in 1967 (1). Clark argues that it is more accurate to see the opening of St Christopher&amp;#x27;s as a &amp;#x27;crucial outcome of ideas and ...
Background/aim: Health policy places emphasis on enabling patients to die in their place of choic... more Background/aim: Health policy places emphasis on enabling patients to die in their place of choice, and increasing the proportion of home deaths. In this article, we seek to explore reported preferences for place of death and experiences of care in a population-based sample of deaths from all causes. Design: Self-completion post-bereavement survey. Setting/Participants: Census of deaths registered in two health districts between October 2009 and April 2010. Views of Informal Carers – Evaluation of Services Short Form was sent to each informant (n = 1422; usually bereaved relative) 6–12 months post-bereavement. Results: Response was 33%. In all, 35.7% of respondents reported that the deceased said where they wanted to die, and 49.3% of these were reported to achieve this. Whilist 73.9% of those who were reported to have a preference cited home as the preferred place, only 13.3% of the sample died at home. Cancer patients were more likely to be reported to achieve preferences than patients with other conditions (p &lt; .01). Being reported to have a record of preferences for place of death increased the likelihood of dying at home (odds ratio = 22.10). When rating care in the last 2 days, respondents were more likely to rate ‘excellent’ or ‘good’ for nursing care (p &lt; .01), relief of pain (p &lt; .01) and other symptoms (p &lt; .01), emotional support (p &lt; .01) and privacy of patient’s environment (p &lt; .01) if their relative died in their preferred place. Conclusions: More work is needed to encourage people to talk about their preferences at the end of life: this should not be restricted to those known to be dying. Increasing knowledge and achievement of preferences for place of death may also improve end-of-life care.
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Papers by Katherine Hunt