By Jackie Pottle, Macmillan Cancer AHP Lead BCUHB and Lisa Heaton Brown, Consultant Clinical Psychologist, Cancer, Haematology & Palliative care.
“I think, for me, the overall impact of the workshop (Video group clinic) was that the recognition by experts in the field that fatigue is ‘real’ and has impacts on life was important as was the knowledge that managing fatigue is very important”
Patient feedback following attendance at a Video-group clinic to support Cancer related fatigue in north wales
What is Cancer related fatigue (CRF)?
CFR is defined as a distressing, persistent, subjective sense of physical, emotional and/or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent physical activity and that interferes with usual functioning.1,,2 However, CRF continues to be the “Cinderella” of cancer symptoms – underreported by patients and undertreated by clinicians.3
How much of a problem is it?
Cancer related fatigue is widespread and evident in up to 99% of people with cancer; 4, with up to 66% of cancer patients reporting moderate to severe Cancer Related Fatigue. It is associated with reduced quality of life, increased psychological distress, reduced treatment adherence, and impaired physical and cognitive functioning5,
Macmillan Holistic Needs Assessments Summaries reflecting patient’s concerns in North Wales in 2020 highlight that for patients, CRF remains the most prevalent symptom across all tumour sites. CRF is complex with multifactorial causes and interventions to support it remaining challenging. A survey completed of HCPs in BCUHB, North Wales in 2019-2020 identified that many HCPs struggle to support patients with this symptom and lacked the time and knowledge to identify and follow evidence based practice
What helps patients and HCPs?
There are clear guidelines from European Society of Medical Oncology – Cancer-related fatigue: ESMO Clinical Practice Guidelines for diagnosis and treatment 2020 6that recommend :-
- Patient and family education;
- Physical activity including aerobic and resistance
- Psychosocial intervention (behavioural therapy, psychotherapy, support groups, changing coping strategies, relaxation, energy conservation, stress management.
ESMO states that Pharmacological interventions are currently not recommended for the control of CRF but studies in UK are being undertaken to review this.
What happened in North Wales?
In North Wales, in order to develop evidence- based services to support as many cancer patients as possible a programme of work has been developed during 2021-22. Macmillan, Wales Cancer network and Elizabeth Casson OT charity has enabled a collaboration between Psychology and OT and has resulted in development of 3 layers of support:-
- Development of a CRF sharepoint site that is available to all HCPs across Wales, and collates in a clear systematic method current evidence of best practice and provides easy, centralised access to a range of stratified resources. Communication with CRF research colleagues In Australia7, Canada8 and France9 has resulted in sharing of resources and utilising best practice guidelines. This supports prudent health care and Heathier Wales approach of supporting self- management in reducing the time that HCPs use to allocate appropriate support. Evidence based interventions have also been placed directly on North Wales cancer patient forum website to support easy access to resources for patients
- Rolling programme of CRF education for all HCPs. This has taken the format of extensive workshop to share guidelines and resources and shorter snapshot sessions to support referral process and awareness of resources. These have currently been attended by over 70 participants
- CRF Range of services to support patients to manage symptoms – from telephone support ; stand- alone education sessions and a series of 3 video-group clinics
Initial plans to provide face to face support were adapted during covid to provide evidence based remote support, with Huang et al 10 demonstrating the effectiveness of an internet-based fatigue management programme for cancer patients, and Ream et al 11 reporting success using telephone support for Cancer Related Fatigue which incorporated motivational interviewing. The video group clinics focus on education and supportive interactions sessions with review of goals between sessions. Plans for the future will be to offer a mixed model of virtual and face –to- face support
Collaboration with patients
Close engagement and communication with North Wales Cancer patient forum and HCP has taken place throughout the project with participants piloting the video-group clinics and collaborating on patient information
Challenges and opportunities for this service development
The limited and short- term nature of funding created recruitment challenges for the development process of this programme of work. Low referrals to services, initial low attendance at Video-group clinics, and patient’s reluctance to engage in remote support have resulted in increased promotion of this service. This is now leading to increased referral rates and improved access to share point information.
However, there have been many opportunities with the development of this work :- increased collaboration across different settings; increased awareness of the importance of asking patients about CRF, close patient involvement increasing the focus on person centred care within BCUHB and the opportunity for involvement in the Welsh Bevan leadership programme. This will support the sharing of the services across Wales with opportunities for other Health Boards across Wales to access the sharepoint information. Close service evaluation ranging from qualitative comments to patient reported outcome measures will be collated to support long term funding if the evaluation demonstrates impact for patients and HCPs. This will result in North Wales providing evidence- based care for CRF and support as many patients and HCPs as possible with this distressing symptom.
- Bower JE. Cancer-related fatigue–mechanisms, risk factors, and treatment. Nat Rev Clin Oncol. 2014;11:597e609.
- Horneber M, Fischer I, Dimeo F, et al. Cancer-related fatigue epidemiology, pathogenesis, diagnosis, and treatment. Dtsch Arztebl. 2012;109:161e16
- Macmillan Tiredness (fatigue) – Macmillan Cancer Support 2019
- Carnio et al Fatigue in lung cancer patients: symptom burden and management of challenges: Lung Cancer (Auckl). 2016; 7: 73–82 https://www.ncbi.nlm.nih.gov/pmc/articles/pmc5310693/
- Lacourt, et al The high costs of low-grade inflammation: persistent fatigue as a consequence of reduced cellular-energy availability and non-adaptive energy expenditure; Front. Behav. Neurosci.26 April 2018
- Fabi et al, Cancer-related fatigue: ESMO Clinical Practice Guidelines for diagnosis and Treatment Anals Of Oncology Vol31 issue 6 2020
- Pearson E et al CRF guidelines Implementi.pdf Cancer related fatigue: implementing guidelines for optimal management . BMC Health Services Research (2017) 17:496 DOI 10.1186/s12913-017-2415-9
- Howell D A Pan Canadian Practice Guideline for Screening, Assessment, and Management of Cancer-Related Fatigue in AdultsVersion 2 – 2015 Doris.Howell@uhn.ca
- Louise Baussard et al, Fatigue in cancer patients: Development and validation of a short form ofthe Multidimensional Fatigue Inventory (MFI-10)
∗ European Journal of Oncology Nursing 36 (2018) 62–67
- Huang et al The effectiveness of the Internet-based self-management program for cancer-related fatigue patients: a systematic review and meta-analysis Clinical Rehabilitation 2020, Vol. 34(3) 287–298
- Ream et al9 (2015) Patient Education and Counseling Management of cancer-related fatigue during chemotherapy through telephone motivational interviewing: Modeling and randomized exploratory trial Volume 98, Issue 2, February 2015,pg199-206