Body weight and the management of lymphoedema Version 1
Research type
Research Study
Full title
Optimal management of lymphoedema: do attitudes towards body weight and experiences of practitioners and patients affect patient engagement and guideline adherence?
IRAS ID
254073
Contact name
Rhian Noble-Jones
Contact email
Sponsor organisation
University of Glasgow
Duration of Study in the UK
2 years, 8 months, 21 days
Research summary
Research Summary
Lymphoedema is a chronic incurable condition which can seriously impact upon quality of life (Mehrara & Greene, 2014). It is the result of an impaired lymphatic system and can lead to swelling, pain, mobility problems, increased risk of infections and skin texture changes (Watts & Davies, 2016). In the developed world lymphoedema prevalence is rising due to an ageing population and growing rates of obesity, chronic illness and cancer (Lockwood, Benson, & Cooke, 2017; Office for National Statistics, 2015), and whilst there are a number of strategies which can be employed to manage lymphoedema, there is no known cure.
There is widespread recognition that obesity is a risk factor in the development of lymphoedema (Mehrara and Greene, 2014); as a result lymphoedema management guidelines recommend that those presenting with overweight and obesity are encouraged and supported to work towards and/or achieve a healthy weight in relation to their height (Lymphoedema Framework, 2006; All Wales Lymphoedema Obesity Policy Group, 2014; London Cancer Alliance, 2015). However, there is no published evidence which enables us to ascertain whether body weight is a considered part of the lymphoedema assessment and management process, and what barriers and supports affect this aspect of care from a patient or practitioner’s perspective. The researcher seeks to address this gap through audit and questionnaires with lymphoedema practitioners delivering NHS lymphoedema services in Scotland (previously collected data - ethical approval gained from University of Glasgow (application number 200170020)) and Wales, and through an online questionnaire and interviews with people who were treated for lymphoedema in the UK.Data collection will take place during 2019-2021 and results will be published as part of a PhD thesis.
Summary of Results
Study title:
Optimal management of lymphoedema: Do attitudes towards body weight affect patient engagement and guideline adherence?
Who carried out the research:
The study was completed by a post-graduate research student from the University of Glasgow. She carried out the study as part of a part-time PhD programme under the supervision of Chief Investigator, Dr Rhian Noble-Jones, and Dr Alison Parrett. The student has not yet finished writing up the results of the study. She expects to complete this late 2023/early 2024. The University of Glasgow is the study sponsor.
Public involvement:
People living with lymphoedema, who were members of a support group in a central Scottish Hospice, helped to develop some of the tools used in the study. The support group were told about the study by their lymphoedema practitioner. Those that agreed to take part contacted the student researcher by email, or by returning a consent form in a pre-paid stamped addressed envelope.
Six people agreed to take part in a telephone interview led by the student researcher. Together they discussed and agreed questions that would be used in a questionnaire. The purpose of the questionnaire was to collect the views of people living with lymphoedema. Once the questionnaire was designed each of the six interviewees were sent a copy for final testing and review.
Patients attending the lymphoedema service at the same central Scottish Hospice, were shown five versions of a poster by their lymphoedema practitioner. The final version of the poster would be used in clinical areas to let people know about the study, and to tell them how they could get involved and share their views. Patients were asked to comment on how the poster looked, how it was worded, and if it contained enough information. The aim was to ensure the poster was eye-catching and acceptable to the target group. Feedback was received from five patients. In response, the poster was changed, and a final version shared.
Finally, the same group of patients that were shown the poster were also shown a leaflet that would be made available to anyone thinking about taking part in the research study. The patients were asked to comment on wording, layout, text size and style, and the volume and type of information used in the leaflet. Feedback from the five patients was used to improve the leaflet and a final version was shared.
Where and when the study took place:
The study took place across the UK. It began in May 2017 with lymphoedema practitioners working in Scotland. It was then extended to lymphoedema practitioners working in Wales in September 2020, and to people living with lymphoedema in 2021.
Study participants:
Lymphoedema practitioners working in Scotland and Wales took part. People living with lymphoedema that were over 18 years of age and that had been treated by a UK lymphoedema service also took part.
Why the research was needed:
Some research suggests that achieving and maintaining a healthy body weight can help to control lymphoedema. There is limited information as to whether body weight is assessed in lymphoedema clinics. It is not known whether weight management is generally advised to people living with lymphoedema by their lymphoedema practitioners, and it is not known how this information is received by patients. By understanding each of these things better, it might be possible to make recommendations that will improve services, and lymphoedema outcomes such as reduced swelling or improved quality of life.
Main questions studied:
This study looked at some of the things a lymphoedema practitioner does in clinic when assessing and treating an individual with lymphoedema. It also looked at why they did what they did. The aim was to understand if a practitioner would discuss body weight and support a person with lymphoedema to manage their weight. It was also to understand what would help a practitioner to do this, and what would stop them. The study also looked at the experiences and views of people living with lymphoedema. The aim was to learn how important body weight is to people living with lymphoedema, and to better understand what would help them to manage their lymphoedema as well as possible.
Study activities:
To answer the research questions a range of activities took place:
What happens during a lymphoedema consultation was established by auditing clinical records of 60 patients in Scotland and 60 patients in Wales, and by asking lymphoedema practitioners working in both countries’ questions via an online questionnaire. Twenty-seven of the 53 practitioners working in Scotland (51%) and 24 of the 59 practitioners working in Wales (41%) filled in the questionnaire. Six practitioners working in Scotland also took part in a focus group. The focus group allowed some of the findings from the audit and questionnaire to be discussed in more detail. This helped the student researcher ensure the correct meaning was being taken from each.
To understand the views and experiences of people living with lymphoedema, an online questionnaire was advertised in lymphoedema clinics across the UK using the poster and leaflet developed in partnership with patients. Information about the questionnaire was also shared through the Lymphoedema Support Network’s newsletter. The newsletter is sent out to roughly 4000 members of the Lymphoedema Support Network. In total, 357 people completed the questionnaire. The questionnaire had 28 questions some of which has a list of possible answers people could choose from, and others allowed people to use their own words to respond to the question saying as much or as little as they liked. People could leave any questions they did not wish to answer blank. Eleven people that completed the questionnaire and said they would be willing to be interviewed, then took part in a telephone interview that lasted for up to one-hour. This helped the student researcher to discuss some of the individual answers to the questionnaire in a little more detail.
Study findings:
The findings from the study are still being analysed and will be published in a thesis as part of a Doctorate of Philosophy (PhD). Where possible, the findings will also be shared through academic journals and relevant conferences that are aimed at people living with lymphoedema and professionals working in the area. An article will also be written and shared via the Lymphoedema Support Network’s Newsletter.
This will be the first study to look at how body weight is included and addressed in lymphoedema consultations in the UK, and the first to look at practice alongside the views and experiences of people living with lymphoedema. Things that help and stop a practitioner from recording and discussing weight have been revealed, as has information about training, awareness of clinical guidelines and general attitudes towards body weight and lymphoedema. The importance of body weight from the perspective of the patient has also been established, as has their experience of monitoring and discussing body weight during a lymphoedema consultation.
Impact of the study on patients and researchers:
At the moment it is too early to determine what the impact of the study will be. It is hoped that by sharing the research findings, the practice of lymphoedema practitioners will be positively affected. It is also hoped that people living with lymphoedema will be better able to manage their condition and they will feel better informed about the role of body weight in lymphoedema.
The researcher would like to thank all study participants, particularly those living with lymphoedema that shared their views and experiences, and spoke so openly about the impact of the condition on their day to day lives.
Further information:
To find out more about this study please contact the student researcher, Debbie Provan at 2341398p@student.glas.ac.uk or the Chief Investigator, Dr Rhian Noble-Jones at Rhian.Noble-Jones@glasgow.ac.uk
REC name
South East Scotland REC 02
REC reference
19/SS/0108
Date of REC Opinion
27 Sep 2019
REC opinion
Favourable Opinion