Background: Juvenile idiopathic arthritis (JIA) is a long-term inflammatory arthritis which starts before the age of 16; 60% of those with JIA continue to have symptoms into adulthood. There are wide variations in experiences of adolescents with JIA, including the effects of the condition on social and intellectual development, self-management, psychological and physical functioning. Individual differences may be due to differences in how adolescents conceptualise JIA. Leventhal's Common Sense Self-regulatory Model (CS-SRM) has been used to theorise adults' experiences of illness, however, this has rarely been used with adolescents. The CS-SRM has three components, mental representations (component 1) that drive coping procedures and illness behaviours (component 2) which are then evaluated and appraised (component 3). A review of studies with adolescent cohorts that applied the CS-SRM found no evidence-base with which to justify application of an adult theory with children or adolescents. Thus the applicability of the theory and the use of the associated questionnaire, the Revised Illness Perceptions Questionnaire (IPQ-R), with adolescents are problematic. Aims: The aims of this PhD were first to assess the suitability of the CS-SRM for adolescents with JIA by investigating the three components of the model, and second, to develop a questionnaire for use with this population. Methods: To investigate the first two components of the CS-SRM, twenty-one participants aged between 11-16 years were recruited from a national cohort of JIA patients. Data collection was undertaken using cognitive interviewing. Framework analysis of the data was used to identify domains used by adolescents to conceptualise their JIA and content analysis to further investigate the suitability of the IPQ-R to assess beliefs. Transcripts were analysed identifying problems or inconsistencies with IPQ-R use. Adolescents' ways of coping with JIA were investigated using the somatic experience module of a computer-based interview, 'In My Shoes' (IMS). To evaluate the third component of the CS-SRM, quantitative data were used in a longitudinal mediation analysis to investigate the extent to which emotional representations and pain predicted physical behaviour (n= 50). To address the second aim of this PhD, Version 1 of the Pain Perception Questionnaire for Young People (PPQ-YP) was devised and sent to 18 healthy adolescents (11- 16) to assess linguistic validity and face validity of the items using a recent pain to answer items and provide feedback on language and length. The psychometric properties of a revised version were tested with 76 adolescents with JIA. Results: Adolescents' responses to having JIA were driven by their emotional and cognitive responses to symptoms (in this case pain) rather than illness beliefs per se. Thus, it is important to assess pain beliefs rather than broader illness representations. The need to preserve their social identity as 'normal' was a coping goal shared across the sample, however different strategies were identified, either to focus on maintaining normal activities or to attend to pain directly. Adolescents who focused on their pain held a more negative emotional representation, reported higher pain and lower functionality compared to adolescents who tried to maintain normality. Based on these results, longitudinal mediation models investigated the role of emotional representations and pain in predicting physical behaviour. Pain mediated 44% of the relationship between emotional representations and physical behaviour. Conclusions: Modifications to the model are recommended to take into account the role of social identity in the process of developing illness behaviours as well as the importance of a symptom driven conceptualisation of the condition.

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This thesis was concerned with determining the scope, nature and impact of pain on quality of life (QOL) among a community-based sample of people with multiple sclerosis (MS). An analysis of the research literature on pain in MS reveals that pain is a significant problem which has historically been underinvestigated and is currently poorly understood. The vast majority of the published literature consists of prevalence studies, descriptive research and clinical reports. Where available, empirical data are often limited by methodological and analytical problems such that substantive conclusions about the scope and nature of MS-related pain remain unclear. Among the most fundamental issues is the extent to which pain is problematic in a population which is already impaired by other physical disabilities. Little is known about how pain contributes to MS-related disability, distress and QOL. Moreover, research examining the psychosocial aspects of MS-related pain is noticeably absent. It is clear that there are substantial gaps in the literature and that many basic questions about the scope, nature and impact of pain problems among individuals with MS remain unanswered. Thus the primary aim of this study was to begin to fill some of these gaps by systematically investigating the following research questions: (1) What is the prevalence and nature of pain experienced by people with MS? (2) What is the impact of pain on the QOL of people with MS, over and above the impact of disability itself? (3) To what extent do physical and psychosocial factors influence adjustment to chronic pain in people with MS? (4) What meaning is given to the pain experience by people with MS? The present study utilised a multimethod research design involving cross-sectional postal survey, structured in-person pain interviews and focus groups. Survey respondents were a 219-person sample recruited from the Queensland MS Society membership database via systematic random sampling. All participants completed a piloted questionnaire containing questions about their demographic and clinical characteristics, validated measures of QOL and MS-related disability, and a question on whether or not they had experienced clinically significant pain in the previous two weeks. Respondents who reported pain then completed face-to-face structured pain interviews assessing pain characteristics (viz. intensity, quality, location, extent and duration), pain-related beliefs and coping strategies, and pain management techniques used. Four focus groups were also conducted that included 32 people with MS living in the community. Study participants were a purposive sample drawn from four MS support groups located in the South-East Queensland region. Pain was found to be common with some 67.1% of the sample reporting pain during the two weeks preceding the study. Comprehensive pain assessment revealed that a substantial subset of these individuals experience chronic pain conditions characterised by moderate-to-severe pain intensity. Pain prevalence and intensity were found to be strongly correlated with QOL: physical health, psychological health, level of independence and global QOL were more likely to be impaired among people with MS when pain was present, and the extent of impairment was associated with the intensity of pain. Moreover, these relationships remained significant even after statistically controlling for multiple demographic and clinical covariates associated with self-reported QOL. Pain-related beliefs and coping strategies were also associated with and explained a significant proportion of the variance in adjustment to pain among people with MS, over and above that accomplished by demographic and MS-related variables and pain intensity. Finally, qualitative data analysis revealed four broad conceptualisations of the experience of chronic MS-related pain including: pain is pervasive, nobody understands, I'm fine, and always a factor in the equation. These findings suggest that for people with MS, pain is an important source of distress and disability over and above that caused by neurological impairments. These data also lead to the hypothesis that recognition and effective treatment of pain would improve the QOL of people with MS, irrespective of their level of neurologic disability. Although correlational, the findings provide support for a biopsychosocial model of pain and adjustment to pain in people with MS.

Introduction: Entry-level physical therapist education on pain has been described as lacking. Calls have been made to include pain science courses to address this knowledge gap. Methods: Physical therapist students’ pain knowledge and attitudes were measured using the revised Neurophysiology of Pain Questionnaire (rNPQ) and Pain Attitudes and Beliefs Scale for Physical Therapists (PABS-PT), respectively. Univariate ANOVAs, with post hoc pairwise comparison and effect sizes, were used to measure these aspects over time. Results: Pain knowledge and clinician beliefs were significantly different (p < 0.001) at various curricular timepoints. rNPQ scores increased from 1st to 2nd year (effect size: 1.10), remained similar between years 2 and 3, and improved following the pain course (effect size: 1.25). Biomedical beliefs were similar during years 1, 2 and 3, and declined following the pain course (effect size: 1.56). Conversely, psychosocial belief scores increased from 1st to 2nd year (effect size: 0.82), remained similar between years 2 and 3, and increased following the pain course (effect size: 1.08). Discussion/Conclusions: Physical therapist education, without a dedicated pain science course, may be insufficiently preparing students to treat patients in pain. Educators should consider adopting a dedicated pain science course or substantially bolstering embedded curricular pain content to promote best practice in pain treatment.