Dataset Information

Improving mesothelioma follow-up care in the UK: a qualitative study to build a multidisciplinary pyramid of care approach

ABSTRACT:

Objectives

The findings reported in this manuscript are part of a wider study that aimed to explore mesothelioma patients’ experiences of follow-up care. The aim of this phase of the study was to co-produce recommendations for policy and practice and to propose a revised, patient-focused, mesothelioma follow-up care service.

Design

The consultation phase was qualitative and consisted of three group discussions with separate stakeholder groups allowing for different priorities and needs for follow-up care to be compared. An implicit approach to consensus was adopted and data were analysed iteratively using the framework method.

Setting

The study was conducted in three National Health Service Trusts in the South of England. Two were secondary care settings and the third was a tertiary centre.

Participants

The consultation exercise comprised three group discussions with key stakeholders (n=35): mesothelioma specialist nurses (n=9), mesothelioma patients and carers (n=11) and local clinical commissioning group members (n=15).

Results

Recommendations for mesothelioma follow-up care were developed using a co-production approach and highlighted the importance of continuity of care, the provision of timely information and the central role played by mesothelioma specialist nurses, supported by the wider multidisciplinary team. Recommendations were produced together with two bespoke infographics to maximise impact and facilitate patient and public engagement with the study.

Conclusions

The recommendations developed are the first that specifically examine best practice for the follow-up care pathway for mesothelioma patients. Co-production and public engagement are crucial to priority setting develop and optimising patient-centred care. Combining the recommendations produced with a targeted dissemination strategy and well-designed, patient-focused infographics will maximise opportunities for impact at a regional and national level.

SUBMITTER: Davey Z

PROVIDER: S-EPMC8587467 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:ObjectivesThe study aim was to explore experiences of patients with pleural mesothelioma of follow-up care in three National Health Service (NHS) Trusts to develop recommendations for practice.DesignThe study design was qualitative and comprised three interlinked phases: a documentary analysis, interviews and consultation meetings. Altheide and Johnson's Analytic Realism theoretical framework guided the thematic data analysis process.SettingThe study was conducted in three NHS Trusts in South England. Two were secondary care settings and the third was a tertiary centre.ParticipantsThe secondary care trusts saw 15-20 patients with new mesothelioma per year and the tertiary centre 30-40. The tertiary centre had a designated mesothelioma team. Twenty-one patients met the inclusion criteria: >18 years, mesothelioma diagnosis and in follow-up care. Non-English speaking participants, those unable to provide written informed consent or those whom the clinical team felt would find participation too distressing were excluded. All participants were white, 71% were 70-79 years old and 71% were men. Three consultation meetings were conducted with key stakeholders including mesothelioma nurse specialists, patients with mesothelioma, carers and local clinical commissioning group members.Main outcome measuresSpecific outcomes were to gain a detailed understanding of mesothelioma follow-up care pathways and processes and to develop coproduced recommendations for practice.ResultsMesothelioma pathways were not always distinct from lung cancer care pathways. All trusts provided follow-up information and resources but there was varied information on how to access local support groups, research or clinical trial participation. Five themes were developed relating to people; processes; places; purpose and perception of care. Coproduced recommendations for improving mesothelioma follow-up pathways were developed following the consultation meetings.ConclusionsThis study has developed recommendations which identify the need for patients with pleural mesothelioma to access consistent, specialist, streamlined mesothelioma care, centred around specialist mesothelioma nurses and respiratory consultants, with input from the wider multidisciplinary team.