Recommendations for improving follow-up care for patients with mesothelioma: a qualitative study comprising documentary analysis, interviews and consultation meetings

Abstract

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.

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

“…Findings from the consultation group discussions on the needs, barriers and solutions emerging from the five key themes (people, purpose, place, process and perception of care) identified in the wider study have been presented elsewhere. 23 These findings highlight the importance of a specialist respiratory led team integrated shared care, the provision of relevant, evidence-based and timely information, resources, and access to support, and clear communication and continuity of care between secondary, community and palliative care services throughout the follow-up care pathway.…”

“…We have reported on the third phase of a study that aimed to explore mesothelioma patients’ experiences of follow-up care in three NHS Trusts in the South of England, 23 across different organisational contexts, taking into account individual patient needs, different stages of disease and treatment pathways, variations in service structures and provision, and different organisational systems and processes. 23 The aim of the third consultation phase was to produce recommendations for a revised, patient-focused, mesothelioma follow-up care pathway.…”

“…We have reported on the third phase of a study that aimed to explore mesothelioma patients’ experiences of follow-up care in three NHS Trusts in the South of England, 23 across different organisational contexts, taking into account individual patient needs, different stages of disease and treatment pathways, variations in service structures and provision, and different organisational systems and processes. 23 The aim of the third consultation phase was to produce recommendations for a revised, patient-focused, mesothelioma follow-up care pathway. Three consultation group discussions were carried out with key stakeholders, specialist nurses, patients with MPM and carers, and local clinical commissioning group members, to discuss and prioritise the key themes identified in earlier phases of the study (people, processes, places, purpose and perception of care), identifying needs, barriers and solutions.…”

“…The recommendations were produced as part of a wider qualitative study that aimed to explore mesothelioma patients’ experiences of follow-up care in three NHS Trusts in the South of England. 23 This wider study adopted a qualitative design and comprised three interlinked phases: documentary analysis, interviews with patients with MPM and consultation group discussions with stakeholders. Specific objectives were to gain a detailed understanding of current mesothelioma follow-up care pathways and processes, compare findings across different trusts and to develop recommendations to propose a revised, patient-focused, follow-up care service.…”

“…Findings from the first two phases of the study (documentary analysis and interviews) have been described elsewhere in detail. 23 In summary, five key themes relating to patient follow-up care were identified: people, processes, places, purpose and perception of care. There were clear variations in the access patients had to different information, resources, services, support groups and research or clinical trial, as well as in the quality and consistency of communication and care received by patients with MPM from nurses and the wider multidisciplinary team.…”