Improving Outcomes for People Living With Unrelieved Neuropathic Cancer Pain - Understanding the Epidemiology, Patient Experience and Optimal Clinical Trial Design: The INCEPT Mixed Methods Project

𝗔𝗶𝗺 The INCEPT Project aimed to describe the impact of unrelieved neuropathic cancer pain and to identify opportunities to improve the outcomes of people living with this condition. 𝗠𝗲𝘁𝗵𝗼𝗱𝘀 Phase I involved a cohort study of pain in the last week of life for Australians with cancer receiving palliative care, and a qualitative systematic review describing the experience of people with neuropathic cancer pain. Phase II sought to explore ways to better develop a solution framework for the evaluation of pharmacological interventions for people living with neuropathic cancer pain. It included a systematic review of sodium channel blockers for cancer pain, and a pilot randomised controlled trial of lidocaine infusion with an embedded semi-structured interview sub-study of trial feasibility and acceptability. Mid-study and end-study meta-inferences integrated the results. 𝗙𝗶𝗻𝗱𝗶𝗻𝗴𝘀 Distress from unrelieved neuropathic cancer pain is commonly experienced by palliative care patients living with cancer. While pain is present in some people of all cultural and socioeconomic backgrounds and all tumour types during the last week of life, its prevalence varies. Tumour characteristics, and spiritual and social context may explain some of this variation. Future research on the experience of neuropathic cancer pain must reflect the diversity of demographic and tumour factors of people with pain at the end of life. Unrelieved neuropathic pain is a complex experience with significant impact on the lives of people living with cancer. The experience is influenced by many factors, including the nature of the pain, spiritual and social context, information provision, functional impact, the patient–provider relationship, and self-efficacy. While some factors are intrinsic and some are modifiable, more research is required to leverage these opportunities to improve neuropathic cancer pain management. A continuous subcutaneous infusion of lidocaine of up to 2 mg/kg/hr was tolerated and has potential to improve outcomes for people living with unrelieved neuropathic cancer pain. Its impact is influenced by multiple domains. A clinical trial of extended continuous subcutaneous infusion of lidocaine is feasible, acceptable to and valued by people living with advanced cancer, including those receiving palliative care. Utilising a patient-centred care framework to design clinical trials for people living with unrelieved neuropathic cancer pain may enhance recruitment, retention, intervention effectiveness, and interpretation of trial results. Incorporating consumer perspectives from trial inception to implementation can align clinical trial design with the five dimensions of patient-centred care and their influencing domains.

Author dc:creator

• Lee, Jessica T.

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• info:eu-repo/semantics/openAccess
• The author owns the copyright in this thesis including all reproduction and reuse rights for the work. The work may not be altered without the permission of the copyright owner. Attribution is essential when quoting or paraphrasing from this thesis.
• © 2025 Jessica T. Lee
• au.edu.uts.lib/cph

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en_US

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http://hdl.handle.net/10453/195393

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oai:opus.lib.uts.edu.au:10453/195393