Test-retest reliability of the PDQ-Carer.

Introduction: The PDQ-Carer is a 29-item measure of health-related quality of life (QoL) for use with carers of people with Parkinson's (PwP). The measure produces a profile of scores across four domains. Previous validation data indicates that the measure possesses sound psychometric properties in terms of validity and internal consistency.

Development of an Exercise-Specific Parkinson's Disease Questionnaire: The PDQ-Exercise.

Background: Exercise is now a significant and key component in the management of Parkinson's disease. However, no self-report, Parkinson's-specific measure of exercise currently exists.

Objective: To develop a patient-reported outcome measure (PROM) for use in studies and clinical trials that aim to assess the efficacy of exercise therapy for people with Parkinson's (PwP).

The Oxford Participation and Activities Questionnaire (Ox-PAQ): development of a short form and index measure.

Background: The Oxford Participation and Activities Questionnaire (Ox-PAQ) is a 23-item patient-reported outcome measure (PROM) theoretically grounded in the World Health Organisation International Classification of Functioning, Disability and Health. Initial validation of the Ox-PAQ identified three domains; routine activities (14 items), emotional well-being (5 items) and social engagement (4 items). The purpose of the analyses reported here were to determine whether an overall index score can be calculated from the measure, and then to determine whether a shorter form measure can replicate results on the index score.

Measuring improvement in health-status with the Oxford Participation and Activities Questionnaire (Ox-PAQ).

The Oxford Participation and Activities Questionnaire (Ox-PAQ) is a recently validated 23-item generic patient reported outcome measure that is theoretically grounded in the World Health Organisation International Classification of Functioning, Disability and Health (ICF), as well as fully FDA compliant. The measure comprises three domains, Routine Activities (14 items), Emotional Well-Being (5 items) and Social Engagement (4 items), and has been shown to be both valid and reliable. The aim of this study was to make a preliminary assessment of the sensitivity to the change of the Ox-PAQ.

Administering the Routine Activities domain of the Oxford Participation and Activities Questionnaire as a stand-alone scale: the Oxford Routine Activities Measure.

Background: The recently validated Oxford Participation and Activities Questionnaire (Ox-PAQ) is a 23-item patient-reported outcome measure, theoretically grounded in the World Health Organization International Classification of Functioning, Disability and Health. The measure is specifically designed to assess participation and activity in people experiencing a range of health conditions. Initial validation of the Ox-PAQ identified three domains: Routine Activities (14 items), Emotional Well-Being (5 items), and Social Engagement (4 items).

Predictors of activity and participation across neurodegenerative conditions: a comparison of people with motor neurone disease, multiple sclerosis and Parkinson's disease.

Background: Comparisons between neurological conditions have the potential to inform service providers by identifying particular areas of difficulty experienced by affected individuals. This study aimed to identify predictors of activity and participation in people with motor neurone disease (MND), people with multiple sclerosis (MS) and people with Parkinson's Disease (PD).

Methods: The Oxford Participation and Activities Questionnaire (Ox-PAQ) and Medical Outcomes Study 36-Item Short Form Survey (MOS SF-36) were administered by postal survey to 386 people with a confirmed diagnosis of MND, MS or PD.

Validation of the Oxford Participation and Activities Questionnaire.

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.

Development of the Oxford Participation and Activities Questionnaire: constructing an item pool.

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.

Evaluating the psychometric properties of an e-based version of the 39-item Parkinson's Disease Questionnaire.

Background: The 39-item Parkinson's Disease Questionnaire (PDQ-39) is the most thoroughly validated and extensively used self-report measure for the assessment of health-related quality of life in people with Parkinson's (PwP). Given the extent of its use and increasing emphasis on electronic data capture, an e-based version of the PDQ-39, the ePDQ, has recently been developed. The aim of this short report is to present some key reliability and validity data that confirm the psychometric quality of the ePDQ.

Change in health status in long-term conditions over a one year period: a cohort survey using patient-reported outcome measures.

Background: Enhancing quality of life for people with long-term conditions by monitoring patient-reported outcome measure scores is a key domain of health care policy. This study investigated the responsiveness of patient-reported outcome measures for long-term conditions.

Methods: A cohort survey was conducted in 33 primary care practices and 4485 patients (1334 asthma, 567 chronic obstructive pulmonary disease, 1121 diabetes, 525 epilepsy, 520 heart failure and 418 stroke) were sent a baseline survey containing a generic (EQ-5D) and a disease-specific measure.

An electronic version of the PDQ-39: acceptability to respondents and assessment of alternative response formats.

Background: The PDQ-39 is the most thoroughly validated and widely used self-report instrument for the assessment of health-related quality of life in people with Parkinson's (PwP). Given the breadth of its use and increasing emphasis on electronic data capture, there may be significant benefit in validating an electronic version of the PDQ-39.

Objective: Firstly, to migrate the paper-based version of the PDQ-39 to a computer based platform and assess its usability and acceptability to respondents.

The Oxford Participation and Activities Questionnaire: study protocol.

Background: With an ageing population and increasing demands on health and social care services, there is growing importance attached to the management of long-term conditions, including maximizing the cost-effectiveness of treatments. In line with this, there is increasing emphasis on the need to keep people both active and participating in daily life. Consequently, it is essential that well developed and validated instruments that can meaningfully assess levels of participation and activity are widely available.

The development and validation of a quality of life measure for the carers of people with Parkinson's disease (the PDQ-Carer).

Background: Parkinson's disease (PD) can have substantial effects not only on the quality of life of those diagnosed with the condition but also upon the informal carers who provide support and assistance to them. However, to date no well-validated carer specific quality of life measure has been developed for carers of people with PD.

Objective: This paper documents the development and validation of a PD specific carer quality of life scale.

The Oxford Conception Study design and recruitment experience.

The Oxford Conception Study is a randomised controlled trial that aims to determine whether or not information about potential fertility from a device that monitors urinary hormones will increase the conception rate in women wishing to conceive. Three modified versions of a fertility monitor have been developed for the study. The monitor measures the levels of urinary oestrone-3-glucuronide (E3G) and luteinising hormone (LH), and the display indicates high or low fertility.