Agreement between dementia patient report and proxy reports using the Nottingham Health Profile

Boyer, Françoise; Novella, Jean‐Luc; Morrone, Isabella; Jolly, Damien; Blanchard, F.

doi:10.1002/gps.1191

Cited by 77 publications

(78 citation statements)

References 36 publications

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“…If information was not available from the participant interviews the informant interviews were used to fill in gaps when possible. Although informants may not always give the same responses that participants with dementia would have given, 208 this did still provide valuable extra information.…”

Section: The Cognitive Function and Ageing Study Analysismentioning

confidence: 99%

Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem)

Bunn

Burn

Goodman

et al. 2016

Health Serv Deliv Res

116

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BackgroundAmong people living with dementia (PLWD) there is a high prevalence of comorbid medical conditions but little is known about the effects of comorbidity on processes and quality of care and patient needs or how services are adapting to address the particular needs of this population.ObjectivesTo explore the impact of dementia on access to non-dementia services and identify ways of improving the integration of services for this population.DesignWe undertook a scoping review, cross-sectional analysis of a population cohort database, interviews with PLWD and comorbidity and their family carers and focus groups or interviews with health-care professionals (HCPs). We focused specifically on three conditions: diabetes, stroke and vision impairment (VI). The analysis was informed by theories of continuity of care and access to care.ParticipantsThe study included 28 community-dwelling PLWD with one of our target comorbidities, 33 family carers and 56 HCPs specialising in diabetes, stroke, VI or primary care.ResultsThe scoping review (n = 76 studies or reports) found a lack of continuity in health-care systems for PLWD and comorbidity, with little integration or communication between different teams and specialities. PLWD had poorer access to services than those without dementia. Analysis of a population cohort database found that 17% of PLWD had diabetes, 18% had had a stroke and 17% had some form of VI. There has been an increase in the use of unpaid care for PLWD and comorbidity over the last decade. Our qualitative data supported the findings of the scoping review: communication was often poor, with an absence of a standardised approach to sharing information about a person’s dementia and how it might affect the management of other conditions. Although HCPs acknowledged the vital role that family carers play in managing health-care conditions of PLWD and facilitating continuity and access to care, this recognition did not translate into their routine involvement in appointments or decision-making about their family member. Although we found examples of good practice, these tended to be about the behaviour of individual practitioners rather than system-based approaches; current systems may unintentionally block access to care for PLWD. Pathways and guidelines for our three target conditions do not address the possibility of a dementia diagnosis or provide decision-making support for practitioners trying to weigh up the risks and benefits of treatment for PLWD.ConclusionsSignificant numbers of PLWD have comorbid conditions such as stroke, diabetes and VI. The presence of dementia complicates the delivery of health and social care and magnifies the difficulties that people with long-term conditions experience. Key elements of good care for PLWD and comorbidity include having the PLWD and family carer at the centre, flexibility around processes and good communication which ensures that all services are aware when someone has a diagnosis of dementia. The impact of a diagnosis of dementia on pre-existing conditions should be incorporated into guidelines and care planning. Future work needs to focus on the development and evaluation of interventions to improve continuity of care and access to services for PLWD with comorbidity.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Section: The Cognitive Function and Ageing Study Analysismentioning

confidence: 99%

Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem)

Bunn

Burn

Goodman

et al. 2016

Health Serv Deliv Res

116

View full text Add to dashboard Cite

show abstract

“…There are discrepancies between patient and proxy report of HRQL in dementia 68 and some evidence suggests that agreement is lower for more subjective domains such as emotional well-being. 69 The development of a proxy-specific measure in which all of the dimensions are meaningful to carers may address some of the concerns about using generic measures for proxy report by carers in dementia. lead from it need further investigation.…”

Section: Discussionmentioning

confidence: 99%

O2‐02‐03: Development of DEMQOL‐U and DEMQOL‐Proxy‐U: Generation of preference‐based indices from DEMQOL and DEMQOL‐Proxy for use in economic evaluation

Banerjee

2012

Alzheimer's & Dementia

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“…Recent reports, however, suggest that the above conviction may be rather an effect of an artifact associated with pain measurement methods. As it is underlined by some authors, most of the tools for assessment of experienced pain was developed on the basis of work with cancer patients and relies on a verbal report, what is a serious barrier in case of severe dementia (Morrison et al, 1998;Boyer et al, 2004). Bachino et al (2001) states directly that there are no evidence proving, that individuals with dementia experience lesser painit seems rather that they have problem with its recognition and verbal communicating its presence.…”

Section: Health Management 44mentioning

confidence: 99%

“…Numerous investigations on mutual relationships between caregivers' and patients' observations of experienced pain were conducted. Boyer et al (2004) states, that, paradoxically, caregivers who are not family members present bigger convergence with a patient's opinions than his/her relatives. Similar conclusions are found in the work by Kivak et al (1994) and Coen et al (2002) who claim, that family members overestimate patient's functioning disorders, his/her tendency to withdraw, sleep disorders, reactivity and energy level decrease.…”

Section: Health Management 48mentioning

confidence: 99%

Pain Experience and Expression in Patients with Dementia

Śmigórski¹,

Leszek²

2010

Health Management

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Agreement between dementia patient report and proxy reports using the Nottingham Health Profile

Abstract: Age and physical status of the patient significantly affected agreement in patient-care provider proxy ratings. Thus, caution is appropriate when resorting to proxies to estimate the Health Status of a dementia patient.

Cited by 77 publications

References 36 publications

Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem)

Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem)

O2‐02‐03: Development of DEMQOL‐U and DEMQOL‐Proxy‐U: Generation of preference‐based indices from DEMQOL and DEMQOL‐Proxy for use in economic evaluation

Pain Experience and Expression in Patients with Dementia

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