Exploring Observational Pain Assessment Tools for Individuals with Moderate-to-Severe Dementia

The global increase in the prevalence of dementia has provoked a multidisciplinary response from researchers, policymakers, educators and clinical sectors. There are many important aspects of care, which need to be considered when looking after an individual with dementia. One such aspect of care, and a fundamental human right, is appropriate pain treatment and management. Due to the progressive neurodegenerative nature of dementia, individuals in the moderate to severe stages of the condition are often unable to self-report their pain, therefore health professionals rely on the use of observational pain assessments. Unfortunately, pain continues to be under-recognised, underestimated and under-treated in people living with moderate-to-severe dementia. There is, therefore, a need to enhance observational pain assessment, to ensure that appropriate pain treatment and management is implemented.

This thesis set out the following aim and objectives: Aim: To examine the psychometric properties, in terms of validity and reliability, of observational pain assessment tools for people living with moderate-to-severe dementia. Objective (a) to conduct a systematic review to further investigate the current state of observational pain assessment tools. Objective (b) to explore feasibility and use of observational pain assessment tools, specifically the Abbey Pain Scale and the PainChek®, in a UK care home setting. Objective (c) to validate and evaluate the psychometric properties of PainChek® in a UK care home. Objective (d) to investigate three case studies of individuals living with dementia who demonstrated atypical pain behaviours. The aim and objectives were accomplished by conducting four studies.
The first study was a systematic review which examined the psychometric properties of observational pain assessment tools. The results from the seventeen studies which met criteria for inclusion indicated a highly heterogeneous, indicating that validity and reliability measures, such as inter-rater reliability or concurrent validity, were highly diverse across observational tools which were tested for psychometric qualities.

The second study utilised exploratory qualitative methods to explore perceived feasibility of two observational pain assessment tools; Abbey Pain Scale and PainChek®. Transcripts from the semi-structured interviews were analysed using a thematic analysis. Four main themes were identified; strengths of the Abbey Pain Scale, limitations of the Abbey Pain Scale, strengths of PainChek®, limitations of PainChek® and critical factors of pain assessment.

The third study focused on validating PainChek®; a semi-automated observational pain assessment tool in a UK care home. Twenty-two participants diagnosed with dementia and a painful condition were recruited. Over a period of sixteen weeks, psychometric properties in terms of validity and reliability of PainChek® were evaluated by direct comparison to the Abbey Pain Scale. Three hundred and two paired pain assessments were completed. The analysis of the data revealed excellent validity and reliability results, demonstrating that PainChek® would be a suitable tool to asses’ pain in people with dementia in UK care homes.

The fourth and final study explored three case studies in depth. During the data collection in the previous study, three participants were consistently expressing atypical and unexpected pain behaviours. The investigation into the three individual case studies has highlighted the importance and growing need for increasing interprofessional education and learning, and a consideration of how uncommon expressions of pain could hinder the accuracy of pain assessment.

The research conducted for this PhD thesis reiterated the on-going issue with under-recognition, underestimation and under-treatment of pain in people with dementia. The overall results collectively investigated and contributed findings towards the current knowledge of pain assessment in people with moderate to advanced dementia, by presenting an in-depth mixed-methods approach. In addition, the results from this thesis demonstrated excellent psychometric properties of PainChek® in a UK care home and explored the current limitations of pain assessment and offered possible solutions. To prevent poor treatment and management of pain in individuals with dementia, regular and accurate use of observational pain assessment tools is recommended. Finally, while feasibility and appropriateness of the use of the PainChek® were explored, further research focusing on implementation is needed to investigate the pragmatic and practical aspects of using an electronic device in care homes.