Background
Cancer-related fatigue is one of the most prevalent and distressing symptoms experienced by people diagnosed with cancer [1]. Effective fatigue management requires cancer survivors and caregivers to adopt a range of self-management behaviours; therefore, the provision of quality self-management support is critical [2]. Clinicians report a lack of clear guidance on self-management practices, which hinders their ability to provide optimal supportive care for people experiencing cancer-related fatigue. To address this need, an evidence-based and consensus-based framework of best practice for health professionals providing self-management support for cancer-related fatigue was developed. The Multinational Association for Supportive Care in Cancer (MASCC) - an interdisciplinary and international organisation dedicated to quality supportive care, endorses this practice framework. This framework provides an important resource for health professionals, researchers, health educators, and people experiencing or at risk of cancer-related fatigue, along with their family and caregiver support network.
Developing the framework
Our evidence-based and consensus-based cancer-related fatigue self-management support practice framework was developed using an iterative approach that classified core practices related to the provision of fatigue self-management support [3]. First, a preliminary framework was developed based on (i) a systematic review which focused on self-management support for cancer-related fatigue [2], and (ii) a self-management support capability outline for primary care professionals [4]. Our systematic review was conducted to identify optimal features and components of self-management support interventions associated with improved cancer-related fatigue outcomes and behavioural outcomes. The review included 51 articles representing 50 randomised controlled trials. Cancer-related fatigue management strategies located within the National Comprehensive Cancer Network's Fatigue guidelines were also incorporated into the preliminary framework [5]. A content analysis of the sources mentioned above was performed, leading to the identification of essential “Key Practices” and “Practice Components”.
“Key Practices” includes the activities needed for health professionals to support the self-management of cancer-related fatigue, while “Practice Components” detail the steps required to accomplish each key practice. The resulting 47-item preliminary framework was distributed for consultation across a diverse international panel sourced from MASCC Study Groups (including Fatigue and Survivorship) and cancer consumer networks including Cancer Voices Australia, Canadian Cancer Survivor Network, and the Guyana Cancer Foundation. This led to 52 participants in Round 1, and 36 participants in Round 2 of a modified Delphi consensus process (Fig. 1) comprising clinicians, researchers, cancer survivors, and caregivers. After this consultation process, the final framework was refined to 44 items—comprising 13 Key Practices and 31 Practice Components—categorised under five domains:
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(1)
Establishing Context and Defining the Problem
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(2)
Developing an Action Plan
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(3)
Improving Patient Knowledge
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(4)
Training Rehearsal (Strategy Building)
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(5)
Care Co-ordination and Maintenance
Using the framework
This fatigue support framework promotes consistent and evidenced-based approaches to cancer-related fatigue care. Health professionals can use the practice framework as a valuable reference tool to support strategies, recommendations, and information, which can promote continuous learning. Additionally, defining key cancer-related fatigue self-management support practices can streamline the implementation process [6] and promote best practice, as clinicians who are knowledgeable of appropriate self-management support practices are more likely to engage in supportive care conversations and interventions with cancer survivors under their care [7]. Furthermore, this framework can benefit a diverse range of other users and stakeholders across a variety of settings, including program evaluators, clinical leaders and educators, cancer consumers, clinical researchers, and intervention developers (Fig. 2).
Future research directions
Further consultation with key stakeholders is required to strengthen this work. This consultation could be used to enhance understanding of stakeholders’ perspectives about the acceptability and relevance of this framework within specific clinical, educational, social, and cultural contexts, including insights from underserved or high-risk groups, as well as within and across countries and communities with various resource constraints (i.e. low, middle, and high resource countries; rural and remote communities). This consultation process may help identify distinct stakeholders’ needs in supporting the implementation of the framework in their local settings as well as determine educational and training requirements. Additionally, further stakeholder consultation can aid in defining the roles of various professional disciplines in providing self-management support for cancer-related fatigue. Consultation is also needed to refine the practice framework to offer precise clinical guidance (e.g., ensuring clinicians consider evidence-based pharmacologic interventions for cancer-related fatigue in addition to promoting self-management support strategies) and implementation guidance that encourages and facilitates clear professional judgment and explicit decision-making. Additionally, future efforts should focus on the development of key performance indicators and measurement strategies (encompassing outcomes from the both clinician and cancer survivor perspective) to effectively assess and monitor improvements in cancer-related fatigue support provision.
It is crucial to emphasise the need for cultural adaptation and language translation to serve the diverse communities and countries worldwide, particularly given MASCC’s multinational scope and focus in providing best-practice supportive care in cancer. It is essential that future work prioritises gathering insights from individuals representing different cultural backgrounds and experiences, allowing for a comprehensive understanding of varying perspectives and needs. For example, the word fatigue does not translate directly from English in some languages, and the notion of cancer-related fatigue may require alternate descriptors in these cases. Accordingly, research efforts should focus on identifying cultural nuances that may impact the experience of cancer-related fatigue and therefore the acceptance and effectiveness of the framework within specific communities. Additionally, establishing partnerships with cultural experts and community leaders will be instrumental in ensuring that the framework is sensitively adapted to align with cultural beliefs, values, and healthcare practices. Ultimately, this collaborative approach will contribute to the development of a culturally adapted practice framework that resonates with diverse populations and facilitates equitable support and care for individuals experiencing cancer-related fatigue.
Endorsement
MASCC (the Multinational Association for Supportive Care in Cancer), through its MASCC Fatigue Study Group, officially endorses this externally produced clinical practice framework for healthcare providers to support cancer survivors to self-manage their cancer-related fatigue. This practice framework is accessible through the MASCC webpage for use.
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Acknowledgements
RJC and NHH receive salary support from the National Health and Medical Research Council (NHMRC) as Investigator Fellows (APP1194051 and APP2017080). The authors also wish to thank the participants worldwide, MASCC membership, cancer survivors, and caregivers for their time to support developing this important resource.
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FDA is the Editor-in-Chief and NHH is an Associate Editor for the Supportive Care in Cancer journal. NHH is Chair of MASCC Fatigue Study Group and Chair of MASCC Exercise Oncology Study Group. AK is Vice-Chair of MASCC Fatigue Study Group. RJC is Chair of MASCC Survivorship and a member of MASCC Executive Committee. FDA is Chair of MASCC Guidelines Committee and ex-officio member of the MASCC Board of Directors. NHH is a MASCC Terry Langbaum Survivorship Fellow. OAA is a MASCC Fatigue Fellow.
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Agbejule, O.A., Chan, R.J., Ekberg, S. et al. Cancer-related fatigue self-management: a MASCC-endorsed practice framework for healthcare professionals to optimally support cancer survivors. Support Care Cancer 31, 666 (2023). https://doi.org/10.1007/s00520-023-08130-6
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DOI: https://doi.org/10.1007/s00520-023-08130-6