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Title: Development of an intervention to optimise cancer pain control
Author: Adam, Rosalind
ISNI:       0000 0004 7228 6634
Awarding Body: University of Aberdeen
Current Institution: University of Aberdeen
Date of Award: 2017
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Introduction: Cancer incidence and prevalence rates are increasing and pain is the most frequent complication of cancer. Cancer pain can have detrimental effects on a patient's social function, mood, and quality of life. Pain is the most frequent symptom to prompt unscheduled medical care in patients with established cancer, and is an important reason for hospitalisation. There are aspects of cancer pain management which involve potentially modifiable patient and healthcare professional behaviours. Patients can have problems reporting pain, communicating about pain with healthcare professionals, using medications effectively, and getting help when problems arise. Healthcare professionals do not always assess pain adequately or prescribe optimally. The aim of this project was to develop an intervention to support patients and professionals in improving cancer pain control. Methods: An Intervention Mapping (IM) approach was taken to intervention development. Current challenges of managing cancer pain and potential solutions were investigated through systematic literature review and qualitative investigations with patients, caregivers, and professionals. The systematic literature review investigated whether patient reported measurements of pain could be collected and fed back to patients and/or healthcare professionals to improve cancer pain management, and described the components of such interventions. Medline, EMBASE, and CINAHL databases were searched from inception to identify randomised and non-randomised controlled trials. Titles, abstracts, and full text articles were dual screened, and assessed independently for risk of bias according to the Cochrane criteria by two researchers. Meta-analysis was performed for studies which reported changes in pain intensity on a zero to ten point scale, and a narrative synthesis was conducted. Qualitative semi-structured interviews with patients with cancer pain, their caregivers, and healthcare professionals and focus groups with healthcare professionals investigated current approaches to cancer pain management, and the challenges and problems experienced. Potential solutions and intervention ideas were explored, along with perceived opportunities for digital technologies to enhance cancer pain management. Qualitative data were analysed using a combination of Framework and thematic analysis. Existing literature and findings from the original qualitative research were used to model the problem, and through the Intervention Mapping approach; behaviour change theory was systematically applied to produce a digital intervention. Prototypes were pre-tested with professional stakeholders. Macmillan nurses recruited patients (with or without a caregiver) from their caseload who had cancer pain and were using strong opioids to provide early indications about the feasibility of the intervention. Nurses also recruited the patient's GP. Patients were invited to interact with the app over a four week period. Weekly patient analgesic and symptom reports were sent to their GP and nurse. At least one consultation with their Macmillan nurse was scheduled in which patient reported data could be discussed. Patients were interviewed by telephone on a weekly basis and all participants were interviewed at the conclusion of the study. All qualitative enquiries were analysed using a combination of Framework and thematic analysis. Patient generated symptom report data were analysed descriptively. Results: Literature review: Twenty nine reports of 22 unique trials of 20 interventions were included in the review. Patient reported outcome measures were used in four main ways: (1) to provide reports about pain and related symptoms to professionals (with the intention of increasing professional awareness of unrelieved symptoms); (2) to tailor patient education about self-management strategies and how to communicate about pain; (3) to prompt contact between a patient and professional when pain is above a set threshold; and (4) to link pain treatments to the severity of pain experienced by the patient via algorithmic management guidelines. Meta-analysis of 12 trials showed that average pain intensity was reduced by half a point out of ten in intervention group participants compared to controls. This result was statistically significant, mean difference -0.59 (95% CI -0.87, -0.30). Qualitative investigations with key stakeholders: Interviews were held with 14 patients, including six with their caregivers present. All patients had locally advanced or metastatic cancer. Nineteen multidisciplinary professionals took part in interviews (15 face to face and four telephone interviews), and 12 took part in one of two focus groups. Themes were organised within two categories: 'the work of managing cancer pain and its context', and 'digital tools to help with this work'. Patients gave accounts of cancer and cancer-related pain as burdensome conditions. Complete alleviation of pain was not the main goal for most patients. Pain was considered alongside functional and activity goals, overall symptom burden, and medication side effects. Professionals recognised patients' individual goals to varying extents. Most patients were regularly using digital technologies. Patients had ideas for digital pain management tools as sources of information and knowledge, to help with medicines management (particularly for reminders and prompts), and as symptom monitoring tools which could stimulate help-seeking. A key concern for all participants was that digital tools should add value over paper resources, should be simple to use, and that data presented were brief and easy to interpret. The intervention and results of early feasibility testing: A digital app was developed to help patients on strong opioids achieve personal treatment goals. The app includes a short film about pain and symptom management, and links to telephone/web-based help. The app allows easy recording of short-acting analgesic doses, linked algorithmically to help-screens. A weekly diary asks about pain, side effects, function, and medication adherence. The digital diary contains novel measures of pain, including a question about the level at which pain becomes bothersome to the individual patient. App reports are automatically shared with linked professionals so that feedback can be given. Recruiting patients with advanced symptomatic cancer was difficult. The app was feasibility tested with two patients, their linked GPs, and Macmillan nurses. Electronic patient reports were shared with linked healthcare professionals using secure NHS email. Professionals found patient reports thought-provoking. Reports were used to inform clinical encounters, and seemed to promote a shared understanding of patient symptom management goals. Conclusions: A digital intervention has been developed using a rigorous, theory-based methodological approach. There are early indications that the intervention could promote patient centred care and shared decision making in patients with cancer pain. Lessons have been learned about recruiting patients with symptomatic cancer, and the intervention is ready to be tested on a larger scale.
Supervisor: Not available Sponsor: Chief Scientist Office ; Scottish Government
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available
Keywords: Cancer ; Pain ; Pain medicine ; Patient participation