| Summary: | The aim of this thesis was to develop a new module on pain and discomfort to be used in conjunction with the UK World Health Organisation Quality of Life Assessment (WHOQOL-lOO) that elaborates the experience of chronic pain (CP). Further aims were to elucidate its psychometric properties and assess the quality of life (QoL) of people with CP. The WHOQOL-lOO is a multilingual, generic instrument for the subjective assessment of QoL in adults. It contains 100 core items represented by 25 specific facets covering six broad domains. The four items in the WHOQOL-lOO that address pain and discomfort have been found to under-represent the impact of pain on QoL, hence the need to develop a pain and discomfort module (PDM). Focus groups (FG's) were conducted to generate data on how pain affects QoL. Ten new facets of QoL pertaining to CP were identified; flare-ups; pain relief; anger/frustration; vulnerability/fear/worry; uncertainty; loss/loneliness/feeling alone; positive strategies; communication; guilt/burdening others; relationship with health care providers. Concurrently, a web survey was conducted to provide confirmation and validation of the areas of QoL identified. A definition and items were written for each new facet of QoL. The resulting 108-item questionnaire was pre-piloted in a sample of people with CP using the technique of cognitive interviewing. Following deletion and modification of items, the 68-item PDM and 16 importance items were administered in a cross-sectional survey, where 4 facets remained in the PDM represented by 16 items. The WHOQOL and PDM were administered to low back pain patients having lumbar epidural steroid injections at baseline and 4-weeks following the intervention in a longitudinal survey to examine sensitivity to change. Patients not undergoing treatment also completed the WHOQOL and PDM at baseline and after 2 weeks to examine test-retest reliability. Pain relief, anger and frustration, vulnerability, fear and worry and uncertainty influence the QoL of people with pain. The PDM will be self-administered and must be used in conjunction with the UK WHOQOL-lOO for large-scale survey work, for evaluating the effectiveness of new and existing interventions designed to reduce the impact of pain on QoL and to identify the needs of sufferers.
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