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The views of public and clinician stakeholders on risk assessment tools for post-stroke dementia: a qualitative study.

ABSTRACT: OBJECTIVE:Stroke-survivors are at increased risk of future dementia. Assessment to identify those at high risk of developing a disease using predictive scores has been utilised in different areas of medicine. A number of risk assessment scores for dementia have been developed but none has been recommended for use clinically. The aim of this qualitative study was to assess the acceptability and feasibility of using a risk assessment tool to predict post-stroke dementia. DESIGN:Qualitative semi-structured interviews were conducted and analysed thematically. The patients and carers were offered interviews at around 6 (baseline) and 12 (follow-up) months post-stroke; clinicians were interviewed once. SETTING:The study was conducted in the North-East of England with stroke patients, family carers and healthcare professionals in primary and secondary care. PARTICIPANTS:Thirty-nine interviews were conducted (17 clinicians and 15 stroke patients and their carers at baseline. Twelve stroke patients and their carers were interviewed at follow-up, some interviews were conducted in pairs). RESULTS:Barriers and facilitators to risk assessment were discussed. For the patients and carers the focus for facilitators were based on the outcomes of risk assessment for example assistance with preparation, diagnosis and for reassurance. For clinicians, facilitators were focused on the process that is, familiarity in primary care, resource availability in secondary care and collaborative care. For barriers, both groups focused on the outcome including for example, the anxiety generated from a potential diagnosis of dementia. For the patients/carers a further barrier included concerns about how it may affect their recovery. For clinicians there were concerns about limited interventions and how it would be different from standard care. CONCLUSIONS:Risk assessment for dementia post-stroke presents challenges given the ramifications of a potential diagnosis of dementia. Attention needs to be given to how information is communicated and strategies developed to support the patients and carers if risk assessment is used.

SUBMITTER: Tang E

PROVIDER: S-EPMC6475139 | biostudies-literature | 2019 Mar

REPOSITORIES: biostudies-literature

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The views of public and clinician stakeholders on risk assessment tools for post-stroke dementia: a qualitative study.

Tang Eugene E Exley Catherine C Price Christopher C Stephan Blossom B Robinson Louise L

BMJ open 20190327 3

<h4>Objective</h4>Stroke-survivors are at increased risk of future dementia. Assessment to identify those at high risk of developing a disease using predictive scores has been utilised in different areas of medicine. A number of risk assessment scores for dementia have been developed but none has been recommended for use clinically. The aim of this qualitative study was to assess the acceptability and feasibility of using a risk assessment tool to predict post-stroke dementia.<h4>Design</h4>Qual ...[more]

PMID: 30918033

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Project description:BACKGROUND:New opportunities to record, collate, and analyze routine patient data have prompted optimism about the potential of learning health systems. However, real-life examples of such systems remain rare and few have been exposed to study. We aimed to examine the views of design stakeholders on designing and implementing a US-based registry-enabled care and learning system for cystic fibrosis (RCLS-CF). METHODS:We conducted a two-phase qualitative study with stakeholders involved in designing, implementing, and using the RCLS-CF. First, we conducted semi-structured interviews with 19 program personnels involved in design and delivery of the program. We then undertook 11 follow-up interviews. Analysis of interviews was based on the constant comparative method, supported by NVivo software. RESULTS:The organizing principle for the RCLS-CF was a shift to more partnership-based relationships between patients and clinicians, founded in values of co-production, and facilitated by technology-enabled data sharing. Participants proposed that, for the system to be successful, the data it collects must be both clinically useful and meaningful to patients and clinicians. They suggested that the prerequisites included a technological infrastructure capable of supporting data entry and joint decision-making in an accessible way, and a set of social conditions, including willingness from patients and clinicians alike to work together in new ways that build on the expertise of both parties. Follow-up interviews highlighted some of the obstacles, including technical challenges and practical constraints on refiguring relationships between clinicians and patients. CONCLUSIONS:The values and vision underlying the RCLS-CF were shared and clearly and consistently articulated by design stakeholders. The challenges to realization were often not at the level of principle, but were both practical and social in character. Lessons from this study may be useful to other systems looking to harness the power of "big data" registries, including patient-reported data, for care, research, and quality improvement.

Project description:ObjectivesThis study aims to assess the implementation of the Family Medicine Programme (FMP), which has taken place in Turkey from 2005 to 2010 as a set of comprehensive primary health care (PHC) reforms and involved changes in professional organisation (eg, family medicine specialisation) and service provision (eg, patients' registration list). Our particular interest is to identify the challenges and limitations that PHC physicians and academicians have encountered in the implementation of the FMP which could have influenced the delivery of care and utilisation of services.DesignWe applied the framework method to analyse data obtained through semi-structured interviews conducted in the field. This qualitative approach involved the categorisation of raw data into a predefined framework, which comprised challenges and limitations identified in the literature, and the emergence of a new framework, whose categories corresponded to challenges and limitations identified through thematic analysis of our data.SettingPHC centres and academic departments from five Turkish provinces.ParticipantsPHC physicians and academicians involved in training and/or research were invited to participate. 20 participants agreed to take part and, due to schedule limitations, 15 participants (seven PHC physicians and eight academicians) completed the interviews.ResultsShortcomings in the planning of the reforms, inadequate commitment to integration of PHC in the system and collateral effects of a market model in healthcare emerged as limitations to successful FMP implementation. Uncertainty about care quality and physicians' ethical values as well as perceptions of organisational injustice among healthcare workers were contributing challenges.ConclusionsA systems thinking approach in the FMP design and implementation could help foresee and address these limitations. In decentralisation processes, such as FMP, shared governance by including PHC stakeholders in policy-making and planning could alleviate misalignment of interests and positively affect PHC performance, for example, by removing barriers to gatekeeping implementation.

Project description:Since 2009, Morocco has been implementing the Maternal Death Surveillance System (MDSS). The results obtained indicate significant regional variations in terms of implementation stage, completeness of maternal death reporting, and information use for action. The objective of this research is to better understand the contextual factors involved in the implementation process and use of MDSS, with a focus on the facilitators and barriers, as experienced by stakeholders in health regions. METHODS: Evaluation research was conducted in 2017 based on a descriptive qualitative study using semi-structured in-depth interviews, in four out of the twelve health regions of Morocco. A total of thirty-one in-depth interviews were held with members of regional committees of maternal death reviews (RC-MDR) and other key informant staff. Interviews focused on participants' views and their experiences with the MDSS since the introduction in 2009. We conducted thematic analysis relied on inductive and deductive approaches. Applying the Consolidated Framework for Implementation Research guided data analysis and reporting findings. FINDINGS: Engaging leadership at all health system levels, regular training of district and regional MDSS coordinators and supportive supervision at a national level were the most important MDSS implementation facilitators. Reported barriers were essentially related to the review system: Irregular review meetings, blame culture, high turn-over of RC-MDR members, lack of analytical capacity to inform the review process and formulate recommendations, finally limited accountability for recommendation follow-up. While financial incentives boosted MDSS adoption, they were nonetheless a substantial barrier to its sustainability. The MDSS is a complex process that requires taking numerous steps, including the commitment of multiple stakeholders with varying roles as well as information sharing across health system levels. Contextual factors that influence MDSS implementation at the sub-national level are to be considered. Horizontal and vertical communication about MDSS goals and feedback is crucial to strengthen stakeholders' commitment, hence improving quality and use of MDSS. Furthermore, health regions should place emphasis on making high-quality recommendations in partnerships between the regional management teams, RC-MDR members and external stakeholders.

Project description:BACKGROUND:Mobile phone call detail records (CDRs) are increasingly being used in health research. The location element in CDRs is used in various health geographic studies, for example, to track population movement and infectious disease transmission. Vast volumes of CDRs are held by multinational organizations, which may make them available for research under various data governance regimes. However, there is an identified lack of public engagement on using CDRs for health research to contribute to an ethically founded framework. OBJECTIVE:This study aimed to explore public views on the use of call detail records in health research. METHODS:Views on using CDRs in health research were gained via a series of three public workshops (N=61) informed by a pilot workshop of 25 people. The workshops included an initial questionnaire to gauge participants' prior views, discussion on health research using CDRs, and a final questionnaire to record workshop outcome views. The resulting data were analyzed for frequencies and emerging themes. RESULTS:At the outset, most participants (66%, 40/61) knew that location data were collected by operators, but only 3% (2/61) knew they were being used for health research. Initially, the majority of the participants (62%, 38/61) was content for their anonymous CDRs to be used, and this increased (80%, 49/61) after the discussion explained that safeguards were in place. Participants highlighted that terms and conditions should be clearer, as should information to phone users on data collection, privacy safeguards, sharing, and uses in research. CONCLUSIONS:This is the first known study exploring public views of using mobile phone CDRs in health research. It revealed a lack of knowledge among the public on uses of CDRs and indicated that people are generally amenable to the use of anonymized data for research, but they want to be properly informed and safeguarded. We recommend that public views be incorporated into an ethically founded framework for the use of CDRs in health research to promote awareness and social acceptability in data use.

Project description:OBJECTIVES:The aim of this study was to critically explore the views of the public about the acceptability and feasibility of proactive approaches to earlier dementia diagnosis and also identification of people at high risk of dementia. DESIGN:Qualitative study using task group methodology and thematic data analysis. SETTING:Task groups were held either at the university (n=5) or at a carers' centre (n=1). PARTICIPANTS:A convenience sample of 31 of 54 participants identified by local non-statutory agencies took part in a task group. All were aged between 40 years and 80 years, 21 were women and 10men participated. RESULTS:Despite the use of task group methodology, participants expressed limited understandings of dementia and confusion between proactive approaches. Nevertheless, they highlighted a range of potential benefits and limitations of proactive approaches and the ethical issues raised. There was a preference to embed risk assessment within routine health checks, which focused on achieving a healthier lifestyle, rather than specifically on dementia. Participants emphasised the need to ensure informed consent prior to use of proactive approaches and to provide appropriate support. They also suggested alternative approaches that could potentially facilitate the early detection of dementia or reduce risk at a population level. CONCLUSIONS:As international policy on dementia shifts towards a prevention agenda there is growing interest in identifying those at risk of developing dementia. This study provides useful insights into the acceptability of the use of such proactive approaches among the public. The introduction of proactive approaches to dementia identification raises complex practical and ethical issues, particularly in the context of low public understanding of dementia. The importance of better quality information about dementia (and the likelihood of developing dementia) and provision of psychological support for those undergoing risk assessment were highlighted.

Dataset Information

The views of public and clinician stakeholders on risk assessment tools for post-stroke dementia: a qualitative study.

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The views of public and clinician stakeholders on risk assessment tools for post-stroke dementia: a qualitative study.

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