Patient reported outcome measures in the recovery of adults hospitalised with community-acquired pneumonia: a systematic review

Symptomatic and functional recovery are important patient-reported outcome measures (PROMs) in community-acquired pneumonia (CAP) that are increasingly used as trial endpoints. This systematic review summarises the literature on PROMs in CAP.Comprehensive searches in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) statement were conducted to March 2017. Eligible studies included adults discharged from hospital following confirmed CAP and reporting PROMs.Fifteen studies (n=5644 patients) were included; most of moderate quality. Studies used a wide range of PROMs and assessment tools. At 4-6 weeks’ post-discharge, the commonest symptom reported was fatigue (45% to 72.6% of patients, 3 studies), followed by cough (35.3% to 69.7%) and dyspnoea (34.2% to 67.1%), corresponding values from studies restricted by ag

Laryngological presentations and patient-reported outcome measures in Ehlers-Danlos syndrome

OBJECTIVE: This study aimed to characterise the laryngological presentations of Ehlers–Danlos syndrome and conduct a preliminary exploration of patient-reported outcome measures. METHODS: This paper describes a retrospective case series of patients with Ehlers–Danlos syndrome seen by the senior author between 2005 and 2019. A literature review was conducted to summarise the existing findings. RESULTS: Twenty-one patients met the inclusion criteria. All reported symptoms were grouped; this showed that swallowing, voice and hyolaryngeal skeletal complex problems were commonest. Patient-reported outcome measures were available for eight patients, which showed large variations in: the Reflux Severity Index (median = 25.5; range = 0–33), Eating Assessment Tool score (median = 21.5; range = 0–35) and Voice Handicap Index (median = 21.5; range = 0–104). Twelve studies met our literature review inclusion criteria, involving at least 91 patients with laryngological presentations of Ehlers–Danlos syndrome. CONCLUSION: Ehlers–Danlos syndrome patients experience musculoskeletal issues, which in the throat manifest as hyolaryngeal skeletal complex problems. Future studies with larger patient numbers are required to validate laryngological patient-reported outcome measure tools in Ehlers–Danlos syndrome

Patient-reported outcome measures for asthma:a systematic review

BACKGROUND: Patient-reported outcome measures (PROMs) are measures of the outcome of treatment(s) reported directly by the patient or carer. There is increasing international policy interest in using these to assess the impact of clinical care. AIMS: To identify suitably validated PROMs for asthma and examine their potential for use in clinical settings. METHODS: We systematically searched MEDLINE, EMBASE and Web of Science databases from 1990 onwards to identify PROMs for asthma. These were critically appraised, then narratively synthesised. We also identified the generic PROMs commonly used alongside asthma-specific PROMs. RESULTS: We identifi ed 68 PROMs for asthma, 13 of which were selected through screening as being adequately developed to warrant full-quality appraisal: 8 for adults, 4 for children and 1 for a child's caregiver. The PROMs found to be sufficiently well validated to offer promise for use in clinical settings were the Asthma Quality of Life Questionnaire (AQLQ) and mini-AQLQ for adults, and Pediatric Asthma Quality of Life Questionnaire for children. Rhinasthma was considered promising in simultaneously assessing the impact of asthma and rhinitis in those with coexistent disease. We identified 28 generic PROMs commonly used in conjunction with asthma-specific instruments. CONCLUSIONS: We identified asthma PROMs that offer the greatest potential for use in clinical settings. Further work is needed to assess whether these are fit-for-purpose for use in clinical practice with individual patients. In particular, there is a need to ensure these are validated for use in clinical settings, acceptable to patients, caregivers and clinicians, and yield meaningful outcomes. © 2014 Primary Care Respiratory Society/Macmillan Publishers Limited

Improving patient-reported outcome measures through visual analytics

In this thesis the important role of visual analytics will be presented as it offers a better understanding of Patient-Reported Outcome Measures (PROMS). PROMS differ from the well-known medical measures, which are objective and quantitative such as blood pressure or blood levels among others, as they are questionnaires that assess aspects of patients’ quality of life. The correct use of these data provides an improvement in healthcare practices, but this remains a research challenge. To fix the problem, the KNoVA project uses these data described from clinical trials, especially in an eye disease called Uveitis. The methodology of Visual Analytics in tackling this problem, and the design and evaluation performed in a prototype are discussed in detail. Intermediary results with Visual Analytics experts show promising uses of the developed solution.En esta tesis se presentará el importante papel de la Analítica Visual, ya que ofrece una mejor comprensión de las medidas de resultados comunicadas por los pacientes (PROMS). Las PROMS se diferencian de las conocidas medidas médicas, que son objetivas y cuantitativas como la presión arterial o los niveles de sangre entre otras, ya que son cuestionarios que evalúan aspectos de la calidad de vida de los pacientes. El uso correcto de estos datos proporciona una mejora en las prácticas sanitarias, pero esto sigue siendo un reto para la investigación. Para solucionar el problema, el proyecto KNoVA utiliza estos datos descritos a partir de ensayos clínicos, especialmente en una enfermedad ocular llamada Uveitis. La metodología de Analítica Visual que se usa para abordar este problema, así como el diseño y la evaluación realizados en un prototipo se discuten en detalle. Los resultados intermedios con expertos en Visual Analytics muestran usos prometedores de la solución desarrollada.En aquesta tesi es presentarà l’important paper de l’Analítica Visual, ja que ofereix una millor comprensió de les mesures de resultats comunicades pels pacients (PROMS). Les PROMS es diferencien de les conegudes mesures mèdiques, que són objectives i quantitatives com la pressió arterial o els nivells de sang entre d’altres, ja que són qüestionaris que avaluen aspectes de la qualitat de vida dels pacients. L’us correcte d’aquestes dades proporciona una millora en les pràctiques sanitàries, però això segueix sent un repte per a la investigació. Per solucionar el problema, el projecte KNoVA utilitza aquestes dades descrites a partir d’assajos clínics, especialment en una malaltia ocular anomenada uveïtis. La metodologia d’Analítica Visual que s’utilitza per abordar aquest problema, així com el disseny i l’avaluació realitzats en un prototip es discuteixen en detall. Els resultats intermedis amb experts en Analítica Visual mostren usos prometedors de la solució de- senvolupada

Patient-reported outcome measures in presbyopia: a literature review

Presbyopia is the age-related loss of near-distance focusing ability. The aim of this study was to identify patient-reported outcome measures (PROMs) used in clinical trials and quality-of-life studies conducted in individuals with presbyopia and to assess their suitability for use in individuals with phakic presbyopia. Literature searches were performed in Medline and Embase up until October 2017. Specific search terms were used to identify presbyopia studies that included a PROM. All clinical trials with PROM-supported endpoints in presbyopia were identified on ClinicalTrials.gov. Further searches were conducted to retrieve articles documenting the development and psychometric evaluation of the PROMs identified. A total of 703 records were identified; 120 were selected for full-text review. Twenty-one clinical trials employed PROMs to support a primary or secondary endpoint. In total, 13 PROMs were identified; a further 23 publications pertaining to the development and validation of these measures were retrieved. Most PROMs were developed prior to release of the Food and Drug Administration (FDA) 2009 patient-reported outcome guidance and did not satisfy regulatory standards. The Near Activity Visual Questionnaire (NAVQ) was identified as the most appropriate for assessing near-vision functioning in presbyopia. While the NAVQ was developed in line with the FDA guidance, the items do not reflect changes in technology that have occurred since the questionnaire was developed in 2008 (eg, the increase in smartphone use), and the measure was not validated in a purely phakic presbyopia sample. Further research is ongoing to refine the NAVQ to support trial endpoints related to changes in near-vision functioning associated with phakic presbyopia