A5027224343- Rheumatoid Arthritis Research and Therapies
- Pulmonary Hypertension Research and Treatments
- Clinical Nutrition and Gastroenterology
- Spondyloarthritis Studies and Treatments
- Fibromyalgia and Chronic Fatigue Syndrome Research
- Health Systems, Economic Evaluations, Quality of Life
- Childhood Cancer Survivors' Quality of Life
- Psoriasis: Treatment and Pathogenesis
- Growth Hormone and Insulin-like Growth Factors
- Paraoxonase enzyme and polymorphisms
- Liver Disease Diagnosis and Treatment
- Inflammatory Bowel Disease
- Health, psychology, and well-being
- Interstitial Lung Diseases and Idiopathic Pulmonary Fibrosis
- Systemic Lupus Erythematosus Research
- Meningioma and schwannoma management
- Lipid metabolism and disorders
- Neurofibromatosis and Schwannoma Cases
- Liver Disease and Transplantation
- Nutrition and Health in Aging
- Vascular Malformations Diagnosis and Treatment
- Vascular Anomalies and Treatments
- Autoimmune and Inflammatory Disorders Research
- Dialysis and Renal Disease Management
- Healthcare cost, quality, practices
Galen Research (United Kingdom)
2013-2021
University of Manchester
1999-2017
Manchester Royal Infirmary
1999
Composite measures that combine different types of indicators are widely used in medical research; to evaluate health systems, as outcomes clinical trials and patient-reported outcome measurement. The potential advantages such indices clear. They summarise complex data overcome the problem evaluating new interventions when most important is rare or likely occur far future. However, many scientists question value composite measures, primarily due inadequate development methodology, lack...
Patient-reported outcome measures (PROMs) are used to collect information directly from patients. They may cover several different types of outcomes ranging symptoms, functioning, utility, satisfaction, through quality-of-life (QoL). generally consist self-completed questionnaires that can be administered by means hard copies or in a range electronic formats. PROMs vary considerably terms the constructs they assess, care with which developed, and their scientific quality. However, none...
All instruments designed to measure latent (unobservable) variables, such as patient-reported outcomes (PROs), have three major requirements; a coherent construct theory, specification equation, and the application of an appropriate response model. The theory guides selection content for questionnaire equation links scores produced with instrument. For perform this role, outcome (PROM) must employ model that generates values its individual items. most commonly applied in PROM development is...
We describe a dramatic response to antioxidant therapy in three patients with familial lipoprotein lipase deficiency complicated by frequent severe episodes of pancreatitis who had failed respond other dietary and pharmacological measures. Antoxidant may be an important advance the management this type patient.
The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) is the first disease-specific instrument for pulmonary arterial hypertension (PAH) to assess patient-perceived symptoms, activity limitations and quality of life. To be able use this questionnaire in Netherlands, aim study was translate validate Dutch-speaking population. First CAMPHOR translated into Dutch (by means a bilingual lay panel) field-tested by cognitive debriefing interviews with ten PAH patients. For psychometric...
Over the past 40 years literally thousands of generic and disease specific patient reported outcome (PRO) instruments have been developed. While most were developed for a study never used again, there is still question how manufacturers others should select PRO instrument study. These studies may be clinical pivotal trials or observational tracking to support therapy response. Formulary committees also need able interpret data make decisions about whether accept claims It possible argue that...
Pulmonary Hypertension (PH) impacts negatively on patients' health-related quality of life (HRQoL). The Cambridge Outcome Review (CAMPHOR) was the first PH-specific and validated instrument for use in different languages worldwide. This report describes adaptation psychometric validation CAMPHOR into Brazilian Portuguese language.The translation process included a bilingual lay panel translation; cognitive debriefing interviews; testing two repeated times assessing internal consistency,...
Aim: Informal caregivers play a vital role in the care of people with Alzheimer’s Disease (AD), yet caregiving is associated caregivers’ burden. The initial objective study was to develop new outcome measure assess quality life (QoL) AD caregivers. Methods: (non-professional) providing 75% or more activities for, and living same household as, person were invited take part study. Qualitative interviews (N = 40) conducted UK thematic analyses applied generate pool potential items. A draft...
Psoriatic arthritis (PsA) is a chronic inflammatory disease that has significant impact on patients' quality of life (QoL). The Arthritis Quality Life (PsAQoL) Scale was developed in the UK to be specific PsA patients and adopts needs-based model QoL. As disease-specific measure, PsAQoL superior generic measures QoL terms relevance sensitivity. which been adapted into 50 languages, not previously available for use with Greek patients. aim study produce version suitable native speakers had...
We describe a dramatic response to antioxidant therapy in three patients with familial lipoprotein lipase deficiency complicated by frequent severe episodes of pancreatitis who had failed respond other dietary and pharmacological measures. Antoxidant may be an important advance the management this type patient.
We developed a brief (5.5 min), continuous voice-hearing task (VHT) to address the limitations of existing paradigms used study auditory verbal hallucinations in laboratory. Correlational analysis VHT data obtained from ordinary participants indicated that false alarm responses on were reliable and had convergent divergent validity. Advantages over other similar tasks include its sound psychometric properties, brevity, flexibility, control confounding factors, suitability for multi-task...
Objective. To test the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) according to Rasch Measurement Theory and investigate whether measurement precision can be improved. Methods. Secondary analysis of a BASDAI database. The data had been collected from individuals starting an Exercise Course at Royal National Hospital for Rheumatic Diseases in Bath, UK. Results. Data were available 250 participants (23.6% female) aged between 18 85 years (mean 52.8, SD 14.6). Initial fit model...
To conduct a cross-cultural adaptation of the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) as an instrument to evaluate perception symptoms, functional limitation, and health-related quality life (HRQoL) in subjects diagnosed with pulmonary arterial hypertension (PAH) or chronic thromboembolic (CTEPH) Colombia.
Abstract Introduction Psoriatic arthritis (PsA) is a multifaceted inflammatory disease that can cause joint destruction and impair quality of life. The Arthritis Quality Life Questionnaire (PsAQoL) was the first disease-specific tool for determining impact on life people with PsA. Objectives primary objective to develop validate Brazilian Portuguese version PsAQoL. Methods UK PsAQoL translated into using two translation panels. This then checked face validity construct new samples patients....
To explore the impact of plexiform neurofibromas on lives adults with neurofibromatosis type 1.Neurofibromatosis 1 is a complex neurogenetic syndrome that affects many aspects health and functioning. A common manifestation neurofibromas, non-cancerous tumours can cause disfigurement, pain neurologic disability. Patient-reported outcome measures used in this condition have addressed symptoms functional ability but not how patients' lives, particularly, their to meet human needs.Unstructured...
The Needs-based model of quality life has been employed in the development a wide range disease-specific measures over last 20 years. argues that disease prevents need fulfilment and effective interventions enable individuals to satisfy more their fundamental human needs. Rather than adopting an existing theoretical framework, needs-based developed through grounded theory techniques. Several theories needs have advanced during 70 years, many which are well known. This article relates major...
ABSTRACT Background To develop and validate a patient‐reported outcome (PRO) measure of quality life (QoL), specific to patients with Neurofibromatosis Type 1 (NF1)‐associated plexiform neurofibromas (pNFs), suitable for use in clinical efficacy trials. The study was conducted parallel the UK US. Methods Qualitative interviews were generate questionnaire content. Face content validity draft scale assessed by cognitive debriefing (CDIs). A postal validation survey identify final version (the...
Background: Pulmonary hypertension (PH) results in severely impaired quality of life (QoL) people with this condition. The CAMbridge Hypertension Outcome Review (CAMPHOR) is the only questionnaire providing a disease-specific measurement symptoms, functioning and QoL PH patients. It has already been adapted for use several countries. aim study was to adapt validate CAMPHOR Polish-speaking population. Methods: Two panels (bilingual lay) were conducted translate into Polish. This new version...