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

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.

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Personalized Cancer Follow-Up Care Pathways: A Delphi Consensus of Research Priorities

JNCI Journal of the National Cancer Institute ◽

10.1093/jnci/djaa053 ◽

2020 ◽

Vol 112 (12) ◽

pp. 1183-1189 ◽

Cited By ~ 1

Author(s):

Corinne R Leach ◽

Catherine M Alfano ◽

Jessica Potts ◽

Lisa Gallicchio ◽

K Robin Yabroff ◽

...

Keyword(s):

Care Delivery ◽

Care Pathway ◽

The United States ◽

Data Sources ◽

Care Pathways ◽

Delphi Consensus ◽

Follow Up Care ◽

Research Questions ◽

Existing Data

Abstract Development of personalized, stratified follow-up care pathways where care intensity and setting vary with needs could improve cancer survivor outcomes and efficiency of health-care delivery. Advancing such an approach in the United States requires identification and prioritization of the most pressing research and data needed to create and implement personalized care pathway models. Cancer survivorship research and care experts (n = 39) participated in an in-person workshop on this topic in 2018. Using a modified Delphi technique—a structured, validated system for identifying consensus—an expert panel identified critical research questions related to operationalizing personalized, stratified follow-up care pathways for individuals diagnosed with cancer. Consensus for the top priority research questions was achieved iteratively through 3 rounds: item generation, item consolidation, and selection of the final list of priority research questions. From the 28 research questions that were generated, 11 research priority questions were identified. The questions were categorized into 4 priority themes: determining outcome measures for new care pathways, developing and evaluating new care pathways, incentivizing new care pathway delivery, and providing technology and infrastructure to support self-management. Existing data sources to begin answering questions were also identified. Although existing data sources, including cancer registry, electronic medical record, and health insurance claims data, can be enhanced to begin addressing some questions, additional research resources are needed to address these priority questions.

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Building Personalized Cancer Follow-up Care Pathways in the United States: Lessons Learned From Implementation in England, Northern Ireland, and Australia

American Society of Clinical Oncology Educational Book ◽

10.1200/edbk_238267 ◽

2019 ◽

pp. 625-639 ◽

Cited By ~ 15

Author(s):

Catherine M. Alfano ◽

Michael Jefford ◽

Jane Maher ◽

Sarah A. Birken ◽

Deborah K. Mayer

Keyword(s):

United States ◽

Health Care ◽

Northern Ireland ◽

Health Care System ◽

The United States ◽

Lessons Learned ◽

Care Pathways ◽

Follow Up Care ◽

Care System

There is a global need to transform cancer follow-up care to address the needs of cancer survivors while efficiently using the health care system to limit the effects of provider shortages, gaps in provider knowledge, and already overburdened clinics; improve the mental health of clinicians; and limit costs to health care systems and patients. England, Northern Ireland, and Australia are implementing an approach that triages patients to personalized follow-up care pathways depending on the types and levels of resources needed for patients’ long-term care that has been shown to meet patients’ needs, more efficiently use the health care system, and reduce costs. This article discusses lessons learned from these implementation efforts, identifying the necessary components of these care models and barriers and facilitators to implementation of this care. Specifically, the United States and other countries looking to transform follow-up care should consider how to develop six key principles of this care: algorithms to triage patients to pathways; methods to assess patient issues to guide care; remote monitoring systems; methods to support patients in self-management; ways to coordinate care and information exchange between oncology, primary care, specialists, and patients; and methods to engage all stakeholders and secure their ongoing buy-in. Next steps to advance this work in the United States are discussed.

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