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Background: Parkinson’s caregivers are frequently affected by a range of physical and psychological factors affecting to the quality of life (QoL) of patients and caregivers. However, while there are well-validated QoL instruments for patients, few specific measures has been developed for caregivers of patients with PD. This study examined the psychometric properties of the Spanish version of the Parkinson Disease Questionnaire–Carer (PDQCarer) for use in PD caregivers. Methods: The PDQ-Carer and the Short Form-36 Health Survey (SF-36) were completed by sample of 73 caregivers of patients with PD in Spain (71.8 % females; 63.6 ± 12.3 years old). Results: Psychometric analysis confirmed the reliability and validity of the Spanish version of the PDQ-Carer. The internal consistency was found to be satisfactory for the four PDQ-Carer domains: Personal and Social Activities, Depression and Anxiety, Self-care and Stress with Cronbach’s alpha values ranging 0.80 to 0.95. The PDQ-Carer was significantly correlated with the eight SF-36 domains (r = -0.31 to -0.59, p < 0.001) supporting the concurrent validity of the instrument. Conclusions: Overall, these results provide preliminary evidence of the utility of the Spanish version of the PDQ-Carer in non-professionals caregivers.

Michele Peters,1 Caroline M Potter,1 Laura Kelly,1 Cheryl Hunter,1 Elizabeth Gibbons,1 Crispin Jenkinson,1 Angela Coulter,1 Julien Forder,2 Ann-Marie Towers,2 Christine A’Court,3,4 Ray Fitzpatrick1 1Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford, 2Personal Social Services Research Unit, University of Kent, Canterbury, 3Nuffield Department of Primary Health Care Sciences, University of Oxford, Oxford, 4Broadshires Health Centre, Carterton, UK Purpose: To identify the main issues of importance when living with long-term conditions to refine a conceptual framework for informing the item development of a patient-reported outcome measure for long-term conditions.Materials and methods: Semi-structured qualitative interviews (n=48) were conducted with people living with at least one long-term condition. Participants were recruited through primary care. The interviews were transcribed verbatim and analyzed by thematic analysis. The analysis served to refine the conceptual framework, based on reviews of the literature and stakeholder consultations, for developing candidate items for a new measure for long-term conditions.Results: Three main organizing concepts were identified: impact of long-term conditions, experience of services and support, and self-care. The findings helped to refine a conceptual framework, leading to the development of 23 items that represent issues of importance in long-term conditions. The 23 candidate items formed the first draft of the measure, currently named the Long-Term Conditions Questionnaire.Conclusion: The aim of this study was to refine the conceptual framework and develop items for a patient-reported outcome measure for long-term conditions, including single and multiple morbidities and physical and mental health conditions. Qualitative interviews identified the key themes for assessing outcomes in long-term conditions, and these underpinned the development of the initial dra

Laura Kelly,1 Caroline M Potter,1 Cheryl Hunter,2 Elizabeth Gibbons,1 Ray Fitzpatrick,1 Crispin Jenkinson,1 Michele Peters1 1Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford, 2Academic Unit of Primary Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK Purpose: It is a key UK government priority to assess and improve outcomes in people with long-term conditions (LTCs). We are developing a new patient-reported outcome measure, the Long-Term Conditions Questionnaire (LTCQ), for use among people with single or multiple LTCs. This study aimed to refine candidate LTCQ items that had previously been informed through literature reviews, interviews with professional stakeholders, and interviews with people with LTCs. Materials and methods: Cognitive interviews (n=32) with people living with LTCs and consultations with professional stakeholders (n=13) and public representatives (n=5) were conducted to assess the suitability of 23 candidate items. Items were tested for content and comprehensibility and underwent a translatability assessment. Results: Four rounds of revisions took place, due to amendments to item structure, improvements to item clarity, item duplication, and recommendations for future translations. Twenty items were confirmed as relevant to living with LTCs and understandable to patients and professionals. Conclusion: This study supports the content validity of the LTCQ items among people with LTCs and professional stakeholders. The final items are suitable to enter the next stage of psychometric refinement. Keywords: long-term conditions, chronic conditions, cognitive debrief interviews, patient-reported

David Morley, Sarah Dummett, Laura Kelly, Jill Dawson, Ray Fitzpatrick, Crispin Jenkinson Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford, UK Purpose: There is growing interest in the management of long-term conditions and in keeping people active and participating in the community. Testing the effectiveness of interventions that aim to affect activities and participation can be challenging without a well-developed, valid, and reliable instrument. This study therefore aims to develop a patient-reported outcome measure, the Oxford Participation and Activities Questionnaire (Ox-PAQ), which is theoretically grounded in the World Health Organization's International Classification of Functioning, Disability, and Health (ICF) and fully compliant with current best practice guidelines. Methods: Questionnaire items generated from patient interviews and based on the nine chapters of the ICF were administered by postal survey to 386 people with three neurological conditions: motor neuron disease, multiple sclerosis, and Parkinson's disease. Participants also completed the Medical Outcomes Study (MOS) 36-Item Short Form Health Survey (SF-36) and EQ-5D-5L. Results: Thus, 334 participants completed the survey, a response rate of 86.5%. Factor analysis techniques identified three Ox-PAQ domains, consisting of 23 items, accounting for 72.8% of variance. Internal reliability for the three domains was high (Cronbach's α: 0.81–0.96), as was test–retest reliability (intraclass correlation: 0.83–0.92). Concurrent validity was demonstrated through highly significant relationships with relevant domains of the MOS SF-36 and the EQ-5D-5L. Assessment of known-groups validity identified significant differences in Ox-PAQ scores among the three conditions included in the survey. Conclusion: Results suggest that the Ox-PAQ is a valid and reliable measure of participation and acti

Laura Kelly, Crispin Jenkinson, Sarah Dummett, Jill Dawson, Ray Fitzpatrick, David Morley Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford, UK Purpose: The Oxford Participation and Activities Questionnaire is a patient-reported outcome measure in development that is grounded on the World Health Organization International Classification of Functioning, Disability, and Health (ICF). The study reported here aimed to inform and generate an item pool for the new measure, which is specifically designed for the assessment of participation and activity in patients experiencing a range of health conditions. Methods: Items were informed through in-depth interviews conducted with 37 participants spanning a range of conditions. Interviews aimed to identify how their condition impacted their ability to participate in meaningful activities. Conditions included arthritis, cancer, chronic back pain, diabetes, motor neuron disease, multiple sclerosis, Parkinson's disease, and spinal cord injury. Transcripts were analyzed using the framework method. Statements relating to ICF themes were recast as questionnaire items and shown for review to an expert panel. Cognitive debrief interviews (n=13) were used to assess items for face and content validity. Results: ICF themes relevant to activities and participation in everyday life were explored, and a total of 222 items formed the initial item pool. This item pool was refined by the research team and 28 generic items were mapped onto all nine chapters of the ICF construct, detailing activity and participation. Cognitive interviewing confirmed the questionnaire instructions, items, and response options were acceptable to participants. Conclusion: Using a clear conceptual basis to inform item generation, 28 items have been identified as suitable to undergo further psychometric testing. A large-scale postal survey will follow in order to refine the instrument further and to assess i

Elizabeth Gibbons, Paul Hewitson, David Morley, Crispin Jenkinson, Ray Fitzpatrick Health Service Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford, UK Background: This report presents evidence regarding the development and validation of a new questionnaire, the Outcomes and Experiences Questionnaire (OEQ). The rationale for the questionnaire is to bring together into one short instrument questions about two distinct domains – patients' reports of the outcomes of their care and how they experience care.Methods: The OEQ was developed from literature reviews, iterative drafting and discussion within the research group and cognitive testing with a sample of patients who had a hospital experience. Two validation studies were carried out with an eleven item OEQ. The goals of the studies were to examine response rates and to test specific hypotheses of how OEQ should relate to other variables normally collected in the two studies. In the first study, the OEQ was added to the follow-up questionnaires for patients (n=490) receiving surgery for hip or knee replacement or varicose vein procedures participating in the national Patient Reported Outcome Measures (PROMs) program permitting the analysis of the OEQ against change scores for the measures obtained before and after surgery. In the second study the OEQ was included in a sample of patients (n=586) who had been selected to receive the National Health Service (NHS) inpatient survey from three contrasting hospital trusts.Results: Results from study one provided consistent and substantial evidence of construct validity of OEQ particularly for those receiving hip or knee replacement. The OEQ sub-scales behaved differently and as predicted against other PROMs variables. Again hypotheses of how the two sub-scales regarding outcomes and experiences would relate to the existing domains of patient experience in the inpatient survey were broadly confirmed in study two.Conclusio