The development of an intervention for cost effective and beneficial lung cancer follow up.

Lead Research Organisation: University of Manchester
Department Name: Nursing Midwifery and Social Work

Abstract

The aim of this study is to improve the quality of life for patients with lung cancer. After initial treatment for cancer, patients are traditionally followed-up by specialist doctors in a hospital setting. This focuses on detecting recurrence of disease and monitoring symptoms so further treatment or palliative and supportive care may be introduced. It is reported that these services are stretched and do not always benefit patients, in particular patients‘ emotional needs may not be attended to in this setting. Although lung cancer is the UK‘s most common cause of cancer death, there is little research that investigates alterative, more beneficial methods of follow-up. Research examining follow-up for other types of cancer has shown specialist nurses, in routine follow up, to be as effective in cost and outcome as doctors and patients have been satisfied with the service. It is important to develop a new service for lung cancer patients to ensure that the particular needs of this group of patients are met. This study aims to develop a new nurse led service for the routine follow-up of patients. This new service will be evaluated, in an explororary trial, to determine its effictiveness, responsiveness to patients‘ needs and benefits to quality of life.

Technical Summary

Background
Lung cancer is the leading cause of cancer death in the UK. Primary treatment has curative intent only in about 10% of cases. There is currently little evidence that suggests what type of follow-up is most beneficial to patients, or cost effective, after initial treatment. Follow-up is important so appropriate second line treatment or supportive or palliative care can be introduced. Innovative methods of follow-up have been developed in other types of cancer, these have been successful at delivering similar outcomes and patient satisfaction as traditional hospital based follow-up.

Aims
This study has two aims
to develop a new intervention for the follow-up of lung cancer patients
to test this intervention for feasibility
It will investigate if a nurse led intervention for follow-up can be as beneficial and cost effective as current provision for patients with lung cancer. It is likely that study outcomes will focus on quality of life and symptom control.

Methods
A systematic review of nurse led interventions for cancer patients will be undertaken to clarify what interventions have already been developed and evaluated. A review of current practice to determine the aim and method of standard follow-up will be conducted at the study sites. The MRC framework for the development and evaluation of randomised controlled trials for complex interventions to improve health will be used to guide the study and develop a robust intervention. The training component of the fellowship will be central to the development of this study. The outcome measures of this study will focus on quality of life, symptom control and patient satisfaction but will include survival and economic evaluation as secondary measures.

Medical and scientific opportunities
This study will provide a unique opportunity to investigate an under researched disease group. Current evidence from nurse led interventions with other cancers are likely to be limited for this disease group, as treatment is only likely to be curative in a small number of patients. This study, although challenging, will provide the opportunity to examine how symptom control, quality of life and patient satisfaction may be improved by using the expertise of specialist nurses. The proposed research will strengthen links between the School of Nursing, Midwifery and Social Work, the Medical School and clinical colleagues in cancer centres. This research will add another dimension to thematic research in cancer follow-up at the School.
 
Description Development of local Cancer Network clinincal guidelines for lung cancer follow-up
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in advisory committee
Impact I worked with local Networks clinicians to use the findings of my research to integrate into local guidelines for follow- up of patients. The working groups met for 6 months and a guidelines document was developed. These guidelines are out for consultation with the wider network.
 
Description member of BTOG gourp on developing guidance for follow up of lung cancer patients
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Membership of a guidance committee
 
Description Dimbleby Cancer Care Research Fund
Amount £88,750 (GBP)
Organisation Dimbleby Cancer Care Research Fund 
Sector Charity/Non Profit
Country United Kingdom
Start 05/2012 
End 06/2013
 
Description Engineering and Physical Sciences Research Council Sponsorship
Amount £34,035 (GBP)
Organisation Engineering and Physical Sciences Research Council (EPSRC) 
Sector Public
Country United Kingdom
Start 09/2012 
End 03/2012
 
Description Roy Castle Radiotherapy feasbility cohort
Amount £55,000 (GBP)
Organisation Roy Castle Lung Cancer Foundation 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2015 
End 05/2016
 
Description Roy Castle Research Grant
Amount £50,000 (GBP)
Organisation Roy Castle Lung Cancer Foundation 
Sector Charity/Non Profit
Country United Kingdom
Start 05/2013 
End 06/2013
 
Description ADELE trial 
Organisation Royal Brompton & Harefield NHS Foundation Trust
Country United Kingdom 
Sector Public 
PI Contribution Contributing to grant application that will be submitted to HTA in January 2015. Specific input relating to qualitative process evalustion
Collaborator Contribution Main trial design and leading grant application
Impact No outputs yet
Start Year 2014
 
Description BTOG follow up guidance 
Organisation British Thoracic Oncology Group
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution The results of the published systematic review were used in the report. I was involved in the interprestaion of data and writing of the report and guidelies published by BTOG
Collaborator Contribution We collaborated on a survey of the follow-up practices of oncologists in lung cancer. This was important to see the variation in practice accross the UK and will inform the intervention I am developing.
Impact BTOG (2011) Follow-up of patients with advanced NSCLC following 1st line chemotherapy. A British Thoracic Oncology Group National Survey Beckett P, Calman L, Darlison L, Mulatero C, Peake M & Talbot D (2011) The British Thoracic Oncology Group National Lung Cancer Follow-up Survey Results NCRI Cancer Conference , Liverpool, 6-9 November 2011 This is multidiciplinary reserch - involving medical and nursing staff.
Start Year 2011
 
Description EPSEC bid 
Organisation University of Manchester
Department School of Computer Science
Country United Kingdom 
Sector Academic/University 
PI Contribution I wrote the collaborative bid for multidisciplinary funding for a project to develop a platform for online support for lung cancer patients. I completed a secondary analysis of data and contributed to the needs assessment of patients and carers
Collaborator Contribution The computer science team, used our findings to develop a profile of needs for support that could be met by online support.
Impact A multi disciplinary paper (computer science, nursing and psychology) has been submitted to CHI13 A Cross-Disciplinary Approach to Identifying Requirements for an Online Health and Social Support System for People with Lung Cancer We continue to work together pursuing further funding to take this research forward.
Start Year 2011
 
Description Roy Castle Foundation Grant 
Organisation University of Southampton
Department Faculty of Health Sciences
Country United Kingdom 
Sector Academic/University 
PI Contribution I developed the research idea and co-wrote the application
Collaborator Contribution Co wrote the grant application
Impact grant has not yet started
Start Year 2011
 
Description Roy castle Radiotherapy feasbility Cohort 
Organisation The Christie NHS Foundation Trust
Department Oncology Christie NHS Foundation Trust
Country United Kingdom 
Sector Public 
PI Contribution Writing of successful research grant award
Collaborator Contribution Expert clinical input
Impact Outcome - successful grant application Multi disciplinary Medical nursing health psychology statistics epidemiology
Start Year 2014
 
Title Living well with lung cancer 
Description Development of a suported self management intervention of the support of lung cancer patients after treatment. Inital development complte and seeking funding for further developmentand testing. 
Type Health and Social Care Services
Current Stage Of Development Initial development
Year Development Stage Completed 2011
Development Status Actively seeking support
Impact Reserch eveidence is being used in local and national guideline development. 
 
Title RESTORE 
Description RESTORE: an online intervention to enhance self-efficacy to manage problems associated with cancer-related fatigue following primary cancer treatment Exploratory RCT funded by Macmillan Cancer Support 
Type Therapeutic Intervention - Psychological/Behavioural
Current Stage Of Development Early clinical assessment
Year Development Stage Completed 2012
Development Status Under active development/distribution
Clinical Trial? Yes
Impact We have developed an online resource to support the self-efficacy for patients with cancer related fatigue and are testing this in an exploratory RCT. 
URL http://www.southampton.ac.uk/msrg/ourresearch/currentprojects/core/onlineintervention/onlineinterven...
 
Description BTOG Guidance 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Health professionals
Results and Impact Survery of oncologista and publication of BTOG report - Follow-up of patients with advanced NSCLC following 1st line chemotherapy. A British Thoracic Oncology Group National Survey

Poster at the NCRI conference - to be followed by academic paper



Report only just published no idenftifiable impact as yet
Year(s) Of Engagement Activity 2011
 
Description Development of Greater Manchester and Cheshire Cancer Network Guidelines for the Follow-up of lung cancer patients 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? Yes
Geographic Reach Regional
Primary Audience Health professionals
Results and Impact I worked with local Networks clinicians to use the findings of my research to integrate into local guidelines for follow- up of patients. The working groups met for 6 months and a guidelines document was developed.

These guidelines are out for consultation with the wider network, we hope they will be inplemented in the next few months.
Year(s) Of Engagement Activity 2010
 
Description Lung cancer confrence 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Health professionals
Results and Impact 60 health professionals attended a lung cancer conference at North Manchester Hospitals. I disseminated results from the study.

There was interest in participation in the study and questions about how to take the findings forward in practice.
Year(s) Of Engagement Activity 2010
 
Description Lung cancer research and education day - Manchester 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Health professionals
Results and Impact I presented finding of systematic review and recommendations for practice.

I have been asked to join one of the Greater Manchester and Cheshire Cancer Network Sub- group developing network guidelines for lung cancer follow-up
Year(s) Of Engagement Activity 2009
 
Description Macmillan Survivorship Education Day 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Talk stimulated debate and contact from 3 practitioners after the event to develop research links

Contact from 3 practitioners after the event to develop research links - visits have been made to the research group
Year(s) Of Engagement Activity 2014
 
Description Self Mangment workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation Workshop Facilitator
Geographic Reach National
Primary Audience Health professionals
Results and Impact The workshop was run as part of the UK Oncology Nurses Society Annual Conference (8th and 9th November 2013 London). 200 nurses were in attendance and around 50 chose to participate in our workshop on Supported Self Management.

We got good feedback from the workshop and a number of nurses are interested in pursuing one of the MSc or Doctoral programmes at the University of Southampton
Year(s) Of Engagement Activity 2013