Dataset Information

Developing a clinical pathway to identify and manage cognitive problems in Multiple Sclerosis: Qualitative findings from patients, family members, charity volunteers, clinicians and healthcare commissioners.

ABSTRACT:

Background

Cognitive problems are a common and debilitating symptom of multiple sclerosis (MS). Screening and treatment for cognitive problems are recommended, however these are not routinely delivered in UK clinics. We collected and synthesised stakeholder perspectives to develop a care pathway for cognitive problems in MS and produce a logic model, illustrating how this pathway might operate.

Methods

Forty-nine stakeholders, including people with MS and care providers, participated in semi-structured interviews and focus groups. Participants viewed information that illustrated how the pathway might work and provided feedback. Data, transcribed verbatim and analysed using Framework Analysis, were mapped onto a preliminary logic model and accompanying thematic framework.

Results

The proposed pathway was perceived as helpful in providing standardised support for a neglected MS symptom. Training packages, online cognitive screening, and triaging decisions were viewed as crucial activities. Shared responsibility, a person-centred approach, and addressing the complexity of cognitive problems were important engagement mechanisms. Allocating time during clinic appointments and within staff workloads were essential resources for implementation.

Conclusion

Our co-constructed MS cognitive screening and management pathway will be evaluated for clinical and cost-effectiveness in a trial. However, in the interim, clinicians can adapt and implement this pathway in their own services and evaluate it locally.

SUBMITTER: Smith L

PROVIDER: S-EPMC7533050 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:ObjectiveTo synthesise data concerning the views of commissioners, managers and healthcare professionals towards the National Health Service (NHS) Health Check programme in general and the challenges faced when implementing it in practice.DesignA systematic review of surveys and interview studies with a descriptive analysis of quantitative data and thematic synthesis of qualitative data.Data sourcesAn electronic literature search of MEDLINE, Embase, Health Management Information Consortium, Cumulative Index of Nursing and Allied Health Literature, Global Health, PsycInfo, Web of Science, OpenGrey, the Cochrane Library, NHS Evidence, Google Scholar, Google, ClinicalTrials.gov and the International Standard Randomised Controlled Trial Number registry from 1 January 1996 to 9 November 2016 with no language restriction and manual screening of reference lists of all included papers.Inclusion criteriaPrimary research reporting views of commissioners, managers or healthcare professionals on the NHS Health Check programme and its implementation in practice.ResultsOf 18?524 citations, 15 articles met the inclusion criteria. There was evidence from both quantitative and qualitative studies that some commissioners and general practice (GP) healthcare professionals were enthusiastic about the programme, whereas others raised concerns around inequality of uptake, the evidence base and cost-effectiveness. In contrast, those working in pharmacies were all positive about programme benefits, citing opportunities for their business and staff. The main challenges to implementation were: difficulties with information technology and computer software, resistance to the programme from some GPs, the impact on workload and staffing, funding and training needs. Inadequate privacy was also a challenge in pharmacy and community settings, along with difficulty recruiting people eligible for Health Checks and poor public access to some venues.ConclusionsThe success of the NHS Health Check Programme relies on engagement by those responsible for its commissioning, management and delivery. Recognising and addressing the challenges identified in this review, in particular the concerns of GPs, are important for the future of the programme.

Project description:BACKGROUND:Volunteers play a significant role in supporting hospice and palliative care in Africa, but little is known about the types of volunteers, their motivations and roles in service delivery. METHODS:Palliative care experts from 30 African countries were invited to participate in an online survey, conducted in English and French, that consisted of 58 questions on: socio-demographics, the activities, motivation and coordination of volunteers, and an appraisal of recent developments in volunteering. The questionnaire was pre-tested in Uganda. Quantitative data was analysed descriptively with SPSS v22; answers on open-ended questions were analysed using content analysis. RESULTS:Twenty-five respondents from 21 countries replied to the questionnaire. The typical volunteer was reported to be a female aged between 30 and 50?years. Volunteer roles included, among others: direct patient assistance, providing psychosocial / spiritual support, and assisting patients' families. Respondents considered altruism, civic engagement and personal gain (for a professional career) as volunteers' most significant motivational drivers. One in two respondents noted that recruiting volunteers is easy, and cooperation with the communities was often mentioned as helpful. Trainings mostly occurred before the first assignment, with topics covering the palliative care concept, care, psychosocial support and team work. Half of respondents described recent overall volunteering developments as positive, while the other half described problems primarily with financing and motivation. Most volunteers received transportation allowances or bicycles; some received monetary compensation. CONCLUSIONS:The findings show a wide range of volunteering in palliative care. We identified volunteers as typically 30-50?years old, non-professional females, motivated by altruism, a sense of civic engagement and personal gain. Palliative care services benefit from volunteers who take on high workloads and are close to the patients. The main challenges for volunteer programmes are funding and the long-term motivation of volunteers.

Project description:BACKGROUND:There is little information about how healthcare professionals feel about providing palliative care for patients with a substance use disorder (SUD). Therefore, this study aims to explore: 1) the problems and needs experienced by healthcare professionals, volunteers and experts-by-experience (HCP/VE) during their work with patients with SUD in a palliative care trajectory and; 2) to make suggestions for improvements using the quality of care model by Donabedian (Structure, Process, Outcome). METHODS:A qualitative study was conducted, consisting of six focus group interviews which consisted of HCP/VE working with patients with SUD in a palliative care phase. At the end of the focus group interviews, participants structured and summarized their experiences within a Strengths, Weaknesses, Opportunities and Threats (SWOT) framework. Interview transcripts (other than the SWOT) were analysed by the researchers following procedures from the Grounded Theory Approach ('Grounded Theory Lite'). SWOT-findings were not subjected to in-depth analysis. RESULTS:HCP/VE stated that within the Structure of care, care networks are fragmented and HCP/VE often lack knowledge about patients' multiplicity of problems and the time to unravel these. Communication with this patient group appears limited. The actual care-giving Process requires HCP/VE a lot of creativity and time spent seeking for cooperation with other caregivers and appropriate care settings. The latter is often hindered by stigma. Since no formalized knowledge is available, care-delivery is often exclusively experience-based. Pain-medication is often ineffective due to active substance use. Finally, several Outcomes were brought forward: Firstly, a palliative care phase is often identified only at a late stage. Secondly, education and a (mobile) team of expertise are desired. Thirdly, care for the caregivers themselves is often de-prioritized. CONCLUSIONS:Better integration and collaboration between the different professionals with extensive experience in addiction, palliative and general curative care is imperative to assure good palliative care for patients with SUD. Currently, the resources for this care appear to be insufficient. Development of an educational program and social mapping may be the first steps in improving palliative care for patients with severe SUD.