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This thesis is a report of a study on patients suffering one of two painful chronic illnesses (rheumatoid arthritis (RA) or migraine), and attempts to discover possible determinants of psychological reactions to long term painful illness. One hundred and sixty chronically ill individuals were interviewed, (80 migraine and 80 RA sufferers). In keeping with other evidence, the extent of psychological disturbance was found to be higher for chronically ill individuals than for general population samples. There were no zero order correlations between reported pain and psychological distress. Age and length of suffering have often been cited as possible factors influencing mood state, but no evidence was found for this in the data gained in this survey. The results provide no evidence for the use of coping strategies as a method of adapting to the demands of the painful chronic illnesses studied here. Beliefs in control over illness have been posited as possible factors that may influence psychological state, and were measured in this research using a health locus of control scale. However locus of control scores were not found to be associated with mood state, although, in keeping with other research, scores were found to be associated with age and social class, with both lower social class and older sufferers scoring higher on externality than those from higher social classes, or whom were younger. The strongest association was found between aspects of subjective health status and mood state. The major finding of this study is that patients assessment of their own health state, in both illnesses, is the major factor associated with psychological state.

Introduction: Assistive technology such as motion detectors, tablet computers, and wearable sensors has the potential to support persons with dementia and their carers. This study investigated the experiences and impact of assistive technology on carers (family, friends and neighbours) who support persons with dementia living at home in the United Kingdom. Methods: Multiple methods were used in this study. Study 1: A systematic review of carers' experiences of assistive technology use in dementia care. Study 2: Exploratory interviews to identify the support carers need and how carers use assistive technology. Study 3: Cognitive interviews to develop the carers' assistive technology experience questionnaire and using this in a sequential explanatory mixed-method study, through a cross-sectional survey (quantitative phase), to identify types of assistive technology carers use and prefer and the benefits and disadvantages of using AT. Study 4: Explanatory interviews (qualitative phase) to describe the experiences and impact of assistive technology on carers. Results: Fifty-six studies were included in the systematic review and found a variety of assistive technologies. Twenty-three participants in the exploratory interviews and 201 participants in the cross-sectional survey confirmed assistive technology was predominantly used for safety and reassurance, followed by communication and reminders. Assistive technology is seen as an adjunct to providing care and carers perceived it as helping manage their stress and anxiety. Explanatory interviews with twenty-three participants showed that carers had predominantly positive experiences of using assistive technology and it often required adjustments to the role of carers and supported their wellbeing. Conclusion: Assistive technology development and its continued use should incorporate carers and match the needs of the person requiring it. This study demonstrated that assistive technology has a beneficial impact on carers and could be one way of supporting carers and ensuring people with dementia continue to live at home.

Improving perioperative recovery is critical to enhance patient care, ensure timely discharge from the patient, clinician and hospital perspective and improve short and long-term outcomes after surgery. A systematic review was performed examining tools for early post-operative recovery after elective lower limb joint replacement. It showed that no fully-validated, patient-reported tools existed. Currently used measures included pain scores, opioid usage, length of stay and surgical satisfaction. In order to address this need, a patient-reported outcome measure (PROM) and change measure for use in the first six weeks following surgery have been developed. A five-phased, best practice, iterative approach was used. Planning Phase - Qualitative interviews (n=22) were performed with orthopaedic healthcare professionals, ascertaining if and how clinicians would use such a PROM. These helped determine the views of potential users, and guide structure and layout. Phase One - Qualitative patient-interviews (n=30) from the day of surgery to nine weeks postoperatively were completed. Analysis of these interviews identified important patient-reported factors in early recovery. Phase Two - The factors provided from Phase One interviews were used to find questionnaire themes. Items were then generated and pilot questionnaires developed. Items were tested and refined in the context of cognitive debrief interviews (n=34) for potential inclusion in the final tools. Phase Three - Final testing of questionnaire properties with item reduction (n=168). The Oxford Arthroplasty Early Recovery Score (OARS) is a 14-item PROM measuring health status at the time of testing. The Oxford Arthroplasty Early Change Score (OACS) is a 14-item measure to assess change. Phase Four - Validation: The OARS and OACS were administered to consecutive patients (n=155) in an independent cohort. Validity and reliability were assessed. Psychometric testing showed positive results, good validity and sensitivity to change. The OARS and OACS were then utilised in a pilot study to assess the feasibility of day case treatment. Inpatient (n=29) and day-case (n=26) unicompartmental knee arthroplasty (UKA) patients completed the two measures, and the results confirmed that day case treatment and discharge is a valid option. The work completed in this thesis will now enable these newly developed scores to be used to define and assess an optimal-recovery protocol for lower limb joint replacement.

Coeliac disease (CD) is a chronic gastrointestinal condition, the only treatment for which is a gluten-free diet (GFD). Following a GFD is restrictive, burdensome, and can impact health-related quality of life (HRQOL). People with CD can experience long delays to diagnosis and evidence suggests large variations in follow-up care, but the relationship between health care experiences and HRQOL is unknown. The main aim of this research was to develop a patient-reported outcome measure and patient experience questionnaire, and use these to investigate the relationship between adults' experiences of health care services and HRQOL in CD. The questionnaires, named the Coeliac Disease Assessment Questionnaire (CDAQ) and the Coeliac Disease Patient Experience Questionnaire (CD-PEQ), were developed following qualitative interviews with adults with CD, and refined with input from experts, and cognitive interviews. The CDAQ was also subject to a translatability assessment to assess its linguistic and cultural translatability, and a cross-sectional survey to assist with item reduction and scale generation. Members of Coeliac UK (n=267) completed the CDAQ and CD-PEQ, together with the SF-36v2 and demographic questions as part of a postal survey. Psychological health, vitality, general health, and dietary burden were found to have the greatest impact on HRQOL, with physical health and social isolation the least affected. HRQOL was found to have a strong correlation with patients' experiences of health care services. Aspects most strongly related were: the provision of information; communication with HCPs; difficulty obtaining prescriptions; and GPs' knowledge. This research has identified aspects of health care services that are strongly related to HRQOL in CD. Health care providers are recommended to focus service improvement efforts on these areas. A reliable and valid disease-specific patient-reported outcome measure and patient experience questionnaire have been developed as part of this study. The CDAQ is suitable for use in research studies, including clinical trials, to assess HRQOL in CD.

Missing data is a potential source of bias in the results of randomised controlled trials (RCTs), which can have a negative impact on guidance derived from them, and ultimately patient care. This thesis aims to improve the understanding, handling, analysis and reporting of missing data in patient reported outcome measures (PROMs) for RCTs. A review of the literature provided evidence of discrepancies between recommended methodology and current practice in the handling and reporting of missing data. Particularly, missed opportunities to minimise missing data, the use of inappropriate analytical methods and lack of sensitivity analyses were noted. Missing data patterns were examined and found to vary between PROMs as well as across RCTs. Separate analyses illustrated difficulties in predicting missing data, resulting in uncertainty about assumed underlying missing data mechanisms. Simulation work was used to assess the comparative performance of statistical approaches for handling missing available in standard statistical software. Multiple imputation (MI) at either the item, subscale or composite score level was considered for missing PROMs data at a single follow-up time point. The choice of an MI approach depended on a multitude of factors, with MI at the item level being more beneficial than its alternatives for high proportions of item missingness. The approaches performed similarly for high proportions of unit-nonresponse; however, convergence issues were observed for MI at the item level. Maximum likelihood (ML), MI and inverse probability weighting (IPW) were evaluated for handling missing longitudinal PROMs data. MI was less biased than ML when additional post-randomisation data were available, while IPW introduced more bias compared to both ML and MI. A case study was used to explore approaches to sensitivity analyses to assess the impact of missing data. It was found that trial results could be susceptible to varying assumptions about missing data, and the importance of interpreting the results in this context was reiterated. This thesis provides researchers with guidance for the handling and reporting of missing PROMs data in order to decrease bias arising from missing data in RCTs.

Introduction: Health-related websites have developed to be much more than information sites: they are used to exchange experiences and find support as well as information and advice. It is important that health professionals and website developers understand how content may impact users. This thesis documents the development and application of a tool to measure the impact of using health-related websites which contain experiential and/or factual information. Methods: A multi-method study with five stages. Stage 1: Questionnaire items based upon themes relating to the impact of using health-related websites were constructed following qualitative secondary analysis of 93 interviews relating to patient and carer experiences of health and a recent literature review. Items were assessed by an expert panel. Stage 2: Cognitive interviews were carried out to confirm acceptability of items. Stage 3: Item reduction steps were used to reduce the number of items. Stage 4: The validity and reliability of the remaining items were tested using traditional and modern psychometric methods. Stage 5: The new questionnaire was piloted in a randomised controlled trial. Results: Eighty-two items were constructed according to the key themes identified in Stage 1. Following expert and patient refinement, two independent item pools entered psychometric testing. The first item pool related to general views of using the internet in relation to health and the second item pool related to the impact of using a specific health-related website. Sub-scales and summary scores were found to have high construct validity, internal consistency and test-retest reliability. The questionnaire showed high completion rates and low counts of missing data in a trial setting. Conclusion: Analysis confirmed good psychometric properties in the eHIQ-Part 1 (11 items) and the eHIQ-Part 2 (26 items). Preliminary findings of trial data demonstrate the acceptability and feasibility of including the eHIQ in randomised controlled trials. This tool will enable the measurement of the impact of health-related websites containing various styles of information and support across a range conditions and facilitate their accurate evaluation in clinical trials.