Victoria Vickerstaff - Academia.edu (original) (raw)

Papers by Victoria Vickerstaff

BMC Psychiatry, 2014

Background: Many people with intellectual disability present with challenging behaviour which oft... more Background: Many people with intellectual disability present with challenging behaviour which often has serious consequences such as the prescription of long term medication, in-patient admissions and disruption of normal daily activities. Small scale studies of Positive Behaviour Support (PBS) delivered by paid carers suggest that it reduces challenging behaviour and costs of care and improves quality of life. This study aims to investigate whether professionals training in the delivery of PBS as part of routine practice is clinically and cost effective compared to treatment as usual in community intellectual disability services.

Palliative medicine, Jan 9, 2015

The prevalence of dementia is rising worldwide and many people will die with the disease. Symptom... more The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Profess...

Contemporary Clinical Trials, 2015

Objectives To review how multiple primary outcomes are currently considered in the analysis of ra... more Objectives To review how multiple primary outcomes are currently considered in the analysis of randomised controlled trials. We briefly describe the methods available to safeguard the inferences and to raise awareness of the potential problems caused by multiple outcomes.

Reviews, 1996

This article describes the second update of a Cochrane review on the effectiveness of laxatives f... more This article describes the second update of a Cochrane review on the effectiveness of laxatives for the management of constipation in people receiving palliative care. Previous versions were published in 2006 and 2010 where we also evaluated trials of methylnaltrexone; these trials have been removed as they are included in another review in press. In these earlier versions, we drew no conclusions on individual effectiveness of different laxatives because of the limited number of evaluations. This is despite constipation being common in palliative care, generating considerable suffering due to the unpleasant physical symptoms and the availability of a wide range of laxatives with known differences in effect in other populations. To determine the effectiveness and differential efficacy of laxatives used to manage constipation in people receiving palliative care. We searched the Cochrane Central Register of Controlled Trials (CENTRAL; The Cochrane Library), MEDLINE, EMBASE, CINAHL and Web of Science (SCI & CPCI-S) for trials to September 2014. Randomised controlled trials (RCTs) evaluating laxatives for constipation in people receiving palliative care. Two authors assessed trial quality and extracted data. The appropriateness of combining data from the studies depended upon clinical and outcome measure homogeneity. We identified five studies involving the laxatives lactulose, senna, co-danthramer, misrakasneham, docusate and magnesium hydroxide with liquid paraffin. Overall, the study findings were at an unclear risk of bias. As all five studies compared different laxatives or combinations of laxatives, it was not possible to perform a meta-analysis. There was no evidence on whether individual laxatives were more effective than others or caused fewer adverse effects. This second update found that laxatives were of similar effectiveness but the evidence remains limited due to insufficient data from a few small RCTs. None of the studies evaluated polyethylene glycol or any intervention given rectally. There is a need for more trials to evaluate the effectiveness of laxatives in palliative care populations. Extrapolating findings on the effectiveness of laxatives evaluated in other populations should proceed with caution. This is because of the differences inherent in people receiving palliative care that may impact, in a likely negative way, on the effect of a laxative.

PAIN, 2015

Pain is underdetected and undertreated in people with dementia. We aimed to investigate the preva... more Pain is underdetected and undertreated in people with dementia. We aimed to investigate the prevalence of pain in people with dementia admitted to general hospitals and explore the association between pain and behavioural and psychiatric symptoms of dementia (BPSD). We conducted a longitudinal cohort study of 230 people, aged above 70, with dementia and unplanned medical admissions to 2 UK hospitals. Participants were assessed at baseline and every 4 days for self-reported pain (yes/no question and FACES scale) and observed pain (Pain Assessment in Advanced Dementia scale [PAINAD]) at movement and at rest, for agitation (Cohen-Mansfield Agitating Inventory [CMAI]) and BPSD (Behavioural Pathology in Alzheimer Disease Scale [BEHAVE-AD]). On admission, 27% of participants self-reported pain rising to 39% on at least 1 occasion during admission. Half of them were able to complete the FACES scale, this proportion decreasing with more severe dementia. Using the PAINAD, 19% had pain at rest and 57% had pain on movement on at least 1 occasion (in 16%, this was persistent throughout the admission). In controlled analyses, pain was not associated with CMAI scores but was strongly associated with total BEHAVE-AD scores, both when pain was assessed on movement (b 5 0.20, 95% confidence interval [CI] 5 0.07-0.32, P 5 0.002) and at rest (b 5 0.41, 95% CI 5 0.14-0.69, P 5 0.003). The association was the strongest for aggression and anxiety. Pain was common in people with dementia admitted to the acute hospital and associated with BPSD. Improved pain management may reduce distressing behaviours and improve the quality of hospital care for people with dementia.

ABSTRACT Carers of people with advanced dementia (AdvD) have high burden and poor mental and phys... more ABSTRACT Carers of people with advanced dementia (AdvD) have high burden and poor mental and physical health. The CoMPASs:IOn programme has developed and is piloting a complex intervention to improve end-of-life care for people with AdvD including support for families. Pilot longitudinal cohort study of carers (target N=40) of people with AdvD (Functional Assessment Staging Scale 7a and above), assessed at study entry then monthly for 9 months or until patient death using the HADS, SF-12 and Satisfaction with Care at the End of Life in Dementia Scale (SWCEOLD). 25 carers currently recruited (mean age 62, range 43-91; 68% female; 76% child of the person with dementia, 48% in paid employment). 92% of those they care for reside in care homes. Initial SWC-EOLD scores were 29.7 (range 13-40), consistent even in 7 carers whose relative died (mean score 30.3 (range 13-40) a month before death, 32.1 (range 13-40) after bereavement). On HADS (cut off ≥8), at initial assessment 40% had anxiety, 28% depression. Anxiety decreased over time; 20% have recorded anxiety 9 months later (7 carers). Two months post-bereavement, 14% of carers had anxiety or depression. At first assessment, SF-12 physical scores were 50 (range 33-58) remaining constant, mental health 48 (range 19-64) declining to 44 post death. It is feasible to recruit carers of people with AdvD and retain them into bereavement. Carers were satisfied with on-going care and around the time of death for the person with AdvD. Accrual continues for a further 4 months.

BMJ open, 2012

Approximately 700 000 people in the UK have dementia, rising to 1.2 million by 2050; one-third of... more Approximately 700 000 people in the UK have dementia, rising to 1.2 million by 2050; one-third of people aged over 65 will die with dementia. Good end-of-life care is often neglected, and detailed UK-based research on symptom burden and needs is lacking. Our project examines these issues from multiple perspectives using a rigorous and innovative design, collecting data which will inform the development of pragmatic interventions to improve care. To define in detail symptom burden, service provision and factors affecting care pathways we shall use mixed methods: prospective cohort studies of people with advanced dementia and their carers; workshops and interactive interviews with health professionals and carers, and a workshop with people with early stage dementia. Interim analyses of cohort data will inform new scenarios for workshops and interviews. Final analysis will include cohort demographics, the symptom burden and health service use over the follow-up period. We shall explore...

BMC Psychiatry, 2014

Background: Many people with intellectual disability present with challenging behaviour which oft... more Background: Many people with intellectual disability present with challenging behaviour which often has serious consequences such as the prescription of long term medication, in-patient admissions and disruption of normal daily activities. Small scale studies of Positive Behaviour Support (PBS) delivered by paid carers suggest that it reduces challenging behaviour and costs of care and improves quality of life. This study aims to investigate whether professionals training in the delivery of PBS as part of routine practice is clinically and cost effective compared to treatment as usual in community intellectual disability services.

BMJ supportive & palliative care, 2015

In line with the National Dementia Strategy (2009), a mixed methods programme was designed to dev... more In line with the National Dementia Strategy (2009), a mixed methods programme was designed to develop and pilot a complex intervention to improve end of life care for people with advanced dementia. A facilitation-based model provided education, training and support to health care professionals (HCPs) creating an integrated, individualised and holistic service. To inform the intervention development, we conducted a series of qualitative interviews to examine HCPs attitudes and knowledge regarding integrated care. A topic guide was used to interview 14 HCPs including commissioners, care home managers, nurses and health care assistants. We used a rigorous approach to data analysis (quality framework recommended by Spencer et al 2003). Thematic analysis identified meaningful themes. Interviews revealed how shortfalls in different sectors providing care for this vulnerable population contribute to discontinuity of care. The main themes found to contribute to care fragmentation were care ...

BMJ supportive & palliative care, 2015

In line with the National Dementia Strategy (2009), a mixed methods programme was designed to dev... more In line with the National Dementia Strategy (2009), a mixed methods programme was designed to develop and pilot a complex intervention to improve end of life care for people with advanced dementia. A facilitation-based model provided education, training and support to health care professionals (HCPs) creating an integrated, individualised and holistic service. To inform the intervention development, we conducted a series of qualitative interviews to examine HCPs attitudes and knowledge regarding integrated care. A topic guide was used to interview 14 HCPs including commissioners, care home managers, nurses and health care assistants. We used a rigorous approach to data analysis (quality framework recommended by Spencer et al 2003). Thematic analysis identified meaningful themes. Interviews revealed how shortfalls in different sectors providing care for this vulnerable population contribute to discontinuity of care. The main themes found to contribute to care fragmentation were care ...

BMJ supportive & palliative care, 2015

Discussion about care preferences and end of life wishes between family and staff on entry to a c... more Discussion about care preferences and end of life wishes between family and staff on entry to a care home is an important predictor of family satisfaction with end of life care for residents with advanced dementia. This paper aims to examine issues relating to end of life discussions with family members of residents with advanced dementia. Data were collected during piloting of the Compassion intervention that engaged an Interdisciplinary Care Leader (ICL) in two care homes and aimed to improve end of life care for residents with advanced dementia. Data included the ICL's reflective diary, time record and interviews with family carers, care home staff, GPs and other health professionals. The ICL assessed 30 residents with advanced dementia and had 37 conversations of at least 15 minutes with family members. Qualitative data were thematically analysed by two researchers. Family members described not having discussed end of life care with healthcare professionals, despite interest...

BMJ supportive & palliative care, 2015

Discussion about care preferences and end of life wishes between family and staff on entry to a c... more Discussion about care preferences and end of life wishes between family and staff on entry to a care home is an important predictor of family satisfaction with end of life care for residents with advanced dementia. This paper aims to examine issues relating to end of life discussions with family members of residents with advanced dementia. Data were collected during piloting of the Compassion intervention that engaged an Interdisciplinary Care Leader (ICL) in two care homes and aimed to improve end of life care for residents with advanced dementia. Data included the ICL's reflective diary, time record and interviews with family carers, care home staff, GPs and other health professionals. The ICL assessed 30 residents with advanced dementia and had 37 conversations of at least 15 minutes with family members. Qualitative data were thematically analysed by two researchers. Family members described not having discussed end of life care with healthcare professionals, despite interest...

BMJ open, 2014

In the UK approximately 700 000 people are living with, and a third of people aged over 65 will d... more In the UK approximately 700 000 people are living with, and a third of people aged over 65 will die with, dementia. People with dementia may receive poor quality care towards the end of life. We applied a realist approach and used mixed methods to develop a complex intervention to improve care for people with advanced dementia and their family carers. Consensus on intervention content was achieved using the RAND UCLA appropriateness method and mapped to sociological theories of process and impact. Core components are: (1) facilitation of integrated care, (2) education, training and support, (3) investment from commissioners and care providers. We present the protocol for an exploratory phase I study to implement components 1 and 2 in order to understand how the intervention operates in practice and to assess feasibility and acceptability. An 'Interdisciplinary Care Leader (ICL)' will work within two care homes, alongside staff and associated professionals to facilitate servi...

BMC Psychiatry, 2014

Background: Many people with intellectual disability present with challenging behaviour which oft... more Background: Many people with intellectual disability present with challenging behaviour which often has serious consequences such as the prescription of long term medication, in-patient admissions and disruption of normal daily activities. Small scale studies of Positive Behaviour Support (PBS) delivered by paid carers suggest that it reduces challenging behaviour and costs of care and improves quality of life. This study aims to investigate whether professionals training in the delivery of PBS as part of routine practice is clinically and cost effective compared to treatment as usual in community intellectual disability services.

Palliative medicine, Jan 9, 2015

The prevalence of dementia is rising worldwide and many people will die with the disease. Symptom... more The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Profess...

Contemporary Clinical Trials, 2015

Objectives To review how multiple primary outcomes are currently considered in the analysis of ra... more Objectives To review how multiple primary outcomes are currently considered in the analysis of randomised controlled trials. We briefly describe the methods available to safeguard the inferences and to raise awareness of the potential problems caused by multiple outcomes.

Reviews, 1996

This article describes the second update of a Cochrane review on the effectiveness of laxatives f... more This article describes the second update of a Cochrane review on the effectiveness of laxatives for the management of constipation in people receiving palliative care. Previous versions were published in 2006 and 2010 where we also evaluated trials of methylnaltrexone; these trials have been removed as they are included in another review in press. In these earlier versions, we drew no conclusions on individual effectiveness of different laxatives because of the limited number of evaluations. This is despite constipation being common in palliative care, generating considerable suffering due to the unpleasant physical symptoms and the availability of a wide range of laxatives with known differences in effect in other populations. To determine the effectiveness and differential efficacy of laxatives used to manage constipation in people receiving palliative care. We searched the Cochrane Central Register of Controlled Trials (CENTRAL; The Cochrane Library), MEDLINE, EMBASE, CINAHL and Web of Science (SCI & CPCI-S) for trials to September 2014. Randomised controlled trials (RCTs) evaluating laxatives for constipation in people receiving palliative care. Two authors assessed trial quality and extracted data. The appropriateness of combining data from the studies depended upon clinical and outcome measure homogeneity. We identified five studies involving the laxatives lactulose, senna, co-danthramer, misrakasneham, docusate and magnesium hydroxide with liquid paraffin. Overall, the study findings were at an unclear risk of bias. As all five studies compared different laxatives or combinations of laxatives, it was not possible to perform a meta-analysis. There was no evidence on whether individual laxatives were more effective than others or caused fewer adverse effects. This second update found that laxatives were of similar effectiveness but the evidence remains limited due to insufficient data from a few small RCTs. None of the studies evaluated polyethylene glycol or any intervention given rectally. There is a need for more trials to evaluate the effectiveness of laxatives in palliative care populations. Extrapolating findings on the effectiveness of laxatives evaluated in other populations should proceed with caution. This is because of the differences inherent in people receiving palliative care that may impact, in a likely negative way, on the effect of a laxative.

PAIN, 2015

Pain is underdetected and undertreated in people with dementia. We aimed to investigate the preva... more Pain is underdetected and undertreated in people with dementia. We aimed to investigate the prevalence of pain in people with dementia admitted to general hospitals and explore the association between pain and behavioural and psychiatric symptoms of dementia (BPSD). We conducted a longitudinal cohort study of 230 people, aged above 70, with dementia and unplanned medical admissions to 2 UK hospitals. Participants were assessed at baseline and every 4 days for self-reported pain (yes/no question and FACES scale) and observed pain (Pain Assessment in Advanced Dementia scale [PAINAD]) at movement and at rest, for agitation (Cohen-Mansfield Agitating Inventory [CMAI]) and BPSD (Behavioural Pathology in Alzheimer Disease Scale [BEHAVE-AD]). On admission, 27% of participants self-reported pain rising to 39% on at least 1 occasion during admission. Half of them were able to complete the FACES scale, this proportion decreasing with more severe dementia. Using the PAINAD, 19% had pain at rest and 57% had pain on movement on at least 1 occasion (in 16%, this was persistent throughout the admission). In controlled analyses, pain was not associated with CMAI scores but was strongly associated with total BEHAVE-AD scores, both when pain was assessed on movement (b 5 0.20, 95% confidence interval [CI] 5 0.07-0.32, P 5 0.002) and at rest (b 5 0.41, 95% CI 5 0.14-0.69, P 5 0.003). The association was the strongest for aggression and anxiety. Pain was common in people with dementia admitted to the acute hospital and associated with BPSD. Improved pain management may reduce distressing behaviours and improve the quality of hospital care for people with dementia.

ABSTRACT Carers of people with advanced dementia (AdvD) have high burden and poor mental and phys... more ABSTRACT Carers of people with advanced dementia (AdvD) have high burden and poor mental and physical health. The CoMPASs:IOn programme has developed and is piloting a complex intervention to improve end-of-life care for people with AdvD including support for families. Pilot longitudinal cohort study of carers (target N=40) of people with AdvD (Functional Assessment Staging Scale 7a and above), assessed at study entry then monthly for 9 months or until patient death using the HADS, SF-12 and Satisfaction with Care at the End of Life in Dementia Scale (SWCEOLD). 25 carers currently recruited (mean age 62, range 43-91; 68% female; 76% child of the person with dementia, 48% in paid employment). 92% of those they care for reside in care homes. Initial SWC-EOLD scores were 29.7 (range 13-40), consistent even in 7 carers whose relative died (mean score 30.3 (range 13-40) a month before death, 32.1 (range 13-40) after bereavement). On HADS (cut off ≥8), at initial assessment 40% had anxiety, 28% depression. Anxiety decreased over time; 20% have recorded anxiety 9 months later (7 carers). Two months post-bereavement, 14% of carers had anxiety or depression. At first assessment, SF-12 physical scores were 50 (range 33-58) remaining constant, mental health 48 (range 19-64) declining to 44 post death. It is feasible to recruit carers of people with AdvD and retain them into bereavement. Carers were satisfied with on-going care and around the time of death for the person with AdvD. Accrual continues for a further 4 months.

BMJ open, 2012

Approximately 700 000 people in the UK have dementia, rising to 1.2 million by 2050; one-third of... more Approximately 700 000 people in the UK have dementia, rising to 1.2 million by 2050; one-third of people aged over 65 will die with dementia. Good end-of-life care is often neglected, and detailed UK-based research on symptom burden and needs is lacking. Our project examines these issues from multiple perspectives using a rigorous and innovative design, collecting data which will inform the development of pragmatic interventions to improve care. To define in detail symptom burden, service provision and factors affecting care pathways we shall use mixed methods: prospective cohort studies of people with advanced dementia and their carers; workshops and interactive interviews with health professionals and carers, and a workshop with people with early stage dementia. Interim analyses of cohort data will inform new scenarios for workshops and interviews. Final analysis will include cohort demographics, the symptom burden and health service use over the follow-up period. We shall explore...

BMC Psychiatry, 2014

Background: Many people with intellectual disability present with challenging behaviour which oft... more Background: Many people with intellectual disability present with challenging behaviour which often has serious consequences such as the prescription of long term medication, in-patient admissions and disruption of normal daily activities. Small scale studies of Positive Behaviour Support (PBS) delivered by paid carers suggest that it reduces challenging behaviour and costs of care and improves quality of life. This study aims to investigate whether professionals training in the delivery of PBS as part of routine practice is clinically and cost effective compared to treatment as usual in community intellectual disability services.

BMJ supportive & palliative care, 2015

In line with the National Dementia Strategy (2009), a mixed methods programme was designed to dev... more In line with the National Dementia Strategy (2009), a mixed methods programme was designed to develop and pilot a complex intervention to improve end of life care for people with advanced dementia. A facilitation-based model provided education, training and support to health care professionals (HCPs) creating an integrated, individualised and holistic service. To inform the intervention development, we conducted a series of qualitative interviews to examine HCPs attitudes and knowledge regarding integrated care. A topic guide was used to interview 14 HCPs including commissioners, care home managers, nurses and health care assistants. We used a rigorous approach to data analysis (quality framework recommended by Spencer et al 2003). Thematic analysis identified meaningful themes. Interviews revealed how shortfalls in different sectors providing care for this vulnerable population contribute to discontinuity of care. The main themes found to contribute to care fragmentation were care ...

BMJ supportive & palliative care, 2015

In line with the National Dementia Strategy (2009), a mixed methods programme was designed to dev... more In line with the National Dementia Strategy (2009), a mixed methods programme was designed to develop and pilot a complex intervention to improve end of life care for people with advanced dementia. A facilitation-based model provided education, training and support to health care professionals (HCPs) creating an integrated, individualised and holistic service. To inform the intervention development, we conducted a series of qualitative interviews to examine HCPs attitudes and knowledge regarding integrated care. A topic guide was used to interview 14 HCPs including commissioners, care home managers, nurses and health care assistants. We used a rigorous approach to data analysis (quality framework recommended by Spencer et al 2003). Thematic analysis identified meaningful themes. Interviews revealed how shortfalls in different sectors providing care for this vulnerable population contribute to discontinuity of care. The main themes found to contribute to care fragmentation were care ...

BMJ supportive & palliative care, 2015

Discussion about care preferences and end of life wishes between family and staff on entry to a c... more Discussion about care preferences and end of life wishes between family and staff on entry to a care home is an important predictor of family satisfaction with end of life care for residents with advanced dementia. This paper aims to examine issues relating to end of life discussions with family members of residents with advanced dementia. Data were collected during piloting of the Compassion intervention that engaged an Interdisciplinary Care Leader (ICL) in two care homes and aimed to improve end of life care for residents with advanced dementia. Data included the ICL's reflective diary, time record and interviews with family carers, care home staff, GPs and other health professionals. The ICL assessed 30 residents with advanced dementia and had 37 conversations of at least 15 minutes with family members. Qualitative data were thematically analysed by two researchers. Family members described not having discussed end of life care with healthcare professionals, despite interest...

BMJ supportive & palliative care, 2015

Discussion about care preferences and end of life wishes between family and staff on entry to a c... more Discussion about care preferences and end of life wishes between family and staff on entry to a care home is an important predictor of family satisfaction with end of life care for residents with advanced dementia. This paper aims to examine issues relating to end of life discussions with family members of residents with advanced dementia. Data were collected during piloting of the Compassion intervention that engaged an Interdisciplinary Care Leader (ICL) in two care homes and aimed to improve end of life care for residents with advanced dementia. Data included the ICL's reflective diary, time record and interviews with family carers, care home staff, GPs and other health professionals. The ICL assessed 30 residents with advanced dementia and had 37 conversations of at least 15 minutes with family members. Qualitative data were thematically analysed by two researchers. Family members described not having discussed end of life care with healthcare professionals, despite interest...

BMJ open, 2014

In the UK approximately 700 000 people are living with, and a third of people aged over 65 will d... more In the UK approximately 700 000 people are living with, and a third of people aged over 65 will die with, dementia. People with dementia may receive poor quality care towards the end of life. We applied a realist approach and used mixed methods to develop a complex intervention to improve care for people with advanced dementia and their family carers. Consensus on intervention content was achieved using the RAND UCLA appropriateness method and mapped to sociological theories of process and impact. Core components are: (1) facilitation of integrated care, (2) education, training and support, (3) investment from commissioners and care providers. We present the protocol for an exploratory phase I study to implement components 1 and 2 in order to understand how the intervention operates in practice and to assess feasibility and acceptability. An 'Interdisciplinary Care Leader (ICL)' will work within two care homes, alongside staff and associated professionals to facilitate servi...