Understanding and measuring the impact of complementary therapies in palliative care

Lead Research Organisation: University College London
Department Name: Division of Psychiatry

Abstract

Background:
An increasing number of people are living at a palliative stage of a terminal condition. At this stage, people often experience changes in physical functioning and a range of symptoms which increases their needs for support to reduce physical, psychological, social and spiritual distress. Conventional medical treatments are not always sufficient however, so Complementary Therapies (CT) have become a popular and accepted adjunct. CT are offered to varying degrees within mainstream health care systems. In palliative care, CT are frequently offered as part of a holistic care package and made available in UK hospices and cancer support centres. Despite this popularity there is limited evidence on the effectiveness of CT due to poor quality data and trials design issues.

Method:
Focusing on aromatherapy, massage and reflexology, a mixed methods programme of research will be conducted which aims to:

1. Understand the disparity between the outcomes used in trials of CT in palliative care populations and the range of patient reported benefits.
2. Develop with patients, therapists and family carers an outcome measure that minimises any mismatch between what patients' seek and what is measured in clinical trials.
 
Description The key finding from this grant was the development of a Core Outcome Set for use in trials of touch-based complementary therapies in adults receiving palliative care. A core outcome set (COS) is a list of outcomes which are agreed to be the most important to measure in scientific trials by key stakeholders. In this research the stakeholders were people with life-limiting illness, complementary therapist and researchers. The final COS consisted of: Anxiety, Sleep quality, Overall mental wellbeing, Pain, Muscle relaxation, Mental resilience, Supportive and empathetic care, Enjoyment, and Patient satisfaction. It is recommended that all future trials of touch-based complementary therapies (such as massage and reflexology) conducted in populations with life-limiting illness measure these outcomes. Consistently measuring these outcomes in scientific trials will ensure that the effects which are valued by patients are not overlooked. It will also standardise data collection and allow for data to be combined and compared more effectively in meta-analyses. This will help us draw firmer conclusions on the effectiveness of touch-based complementary therapies for people with life-limiting illness.

From this grant, our research also generated new knowledge on the quality of outcome measurement tools used in research of complementary therapies. In our systematic review we applied the COSMIN process (a structured approach to evaluating the development and validity of outcome measurement tools) to determine whether commonly used tools were appropriate for research with people with life-limiting illness. We established that many commonly used tools for testing the effects of complementary therapies have not been adequately developed or tested in populations with life-limiting illness. This is a concern as these outcome measures may not be appropriate for detecting the effects of complementary therapies and lead to inaccurate conclusions. This key finding has opened up future research possibilities as the need for further validation of existing measures, or the development of a new appropriate outcome measure, was highlighted.

I conducted interviews with people with life-limiting illness and complementary therapists about their experience either receiving or delivering complementary therapies in a hospice. This research shed light on how therapies are delivered in practice, which aspects of complementary therapies are most valued by patients and a range of perceived benefits. This insight has the potential to improve the quality of complementary therapies delivered in clinical trials by ensuring they reflect real-world delivery.

During this grant, I was also able to collaborate with the Rapid Research Evaluation and Appraisal Lab to conduct telephone interviews with healthcare professionals during the COVID-19 pandemic. Key findings were developed from this research relating to the experiences of healthcare workers during the pandemic and the impact of COVID-19 on staff mental health, the provision of end-of-life care and emotional management.
Exploitation Route I envision that the Core Outcome Set and our findings on the quality of outcome measurement tools
will be adopted by those conducting future research on palliative healthcare. Future trials on the effectiveness of touch-based complementary therapies should measure all of the outcomes included in the core outcome set and select outcome measurement tools based on our literature review recommendations. Future research may also develop and validate outcome measurement tools for use in populations with advanced disease in line with our conclusions.

Together these key findings will improve the quality of research conducted and the evidence the trials produce. From this we will be able to draw clearer conclusion on the effectiveness of touch-based therapies for people with advanced disease. Doing so will ensure that the care provide to patients with advanced disease is evidence based and of the highest quality. We have already had requests from complementary therapists and hospices who provide these therapies, to share our findings when they are complete.
Sectors Healthcare

Other
 
Description Hospice Newsletter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact An academic poster I developed for the Marie Curie Research Conference (2023) was shared with staff and study participants in the Hospice newsletter. The poster summarised my research findings in an easily accessible format. The news letter also advertised my talk (22nd March 2023) where I would come and present my work at their journal club.
Year(s) Of Engagement Activity 2023
 
Description Hospice presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact I presented my research findings to hospice staff in Surrey. The hospice had supported me with recruitment and was keen to hear what I had found. I presented my findings for 30 minutes then we engaged in a critical group discussion for 15 minutes. They asked for me to share any publication and posters of my work following.
Year(s) Of Engagement Activity 2023
 
Description Hospice presentation - Online 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact I presented an overview of my Core Outcome Set development research to hospice staff in their journal club. I presented for 30 minutes then engaged in question and answer and a critical discussion of my research.
Year(s) Of Engagement Activity 2023
 
Description MSc Lecture 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact I presented a 1-hour lecture on the topic of palliative care and the role of complementary therapies for people with cancer. The lecture was for postgraduate (MSc) students at University College London. The students stayed to speak with me at the end and explained how this was a new topic for them. Many asked follow up questions and expressed an interest in the methods and subject.
Year(s) Of Engagement Activity 2023