-
Latest News
Archives
Tag Archives: Patient-Reported Outcome Measures
CFS & Quality of Life
Chronic fatigue syndrome and quality of life, by Deb Roberts in Patient Related Outcome Measures Vol 2018, #9, pp 253-262 [Published August 1, 2018] Article abstract: Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a challenging long-term condition (LTC) with complex … Continue reading
Posted in News
Tagged Deb Roberts, Patient-Reported Outcome Measures, PROMS, QoL, Quality of life, WHOQoL-Bref26
Comments Off on CFS & Quality of Life
Important factors to consider when treating children with CFS/ME
Research abstract: Background: Paediatric Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME) is relatively common and disabling. Improving treatment requires the development of Patient Reported Outcome Measures (PROMs) that enable clinicians and researchers to collect patient-centred evidence on outcomes. Health professionals are well placed to provide … Continue reading
Posted in News
Tagged adolescents, Alison Shaw, children, Dr Esther Crawley, Kirstie Haywood, paediatric ME, Patient-Reported Outcome Measures, PROMS, Roxanne M Parslow, teenagers
Comments Off on Important factors to consider when treating children with CFS/ME
A better way to measure ME/CFS experience is needed
Research abstract: PURPOSE: Debilitating fatigue is a core symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS); however, the utility of patient-reported symptom outcome measures of fatigue for ME/CFS patients is problematic due to ceiling effects and issues with reliability and validity. … Continue reading
Posted in News
Tagged DePaul Symptom Questionnaire, Dr Suzanne Vernon, MFI scales, Multidimensional Fatigue Inventory, Patient-Reported Outcome Measures, PROMS, SF-36
Comments Off on A better way to measure ME/CFS experience is needed
Measuring patient experience and success of services – can you help?
The Wales Neurological Alliance is looking for patients and carers to take part in focus groups across Wales to help Public Health Wales develop appropriate PROMs and PREMs across the NHS. What are PREMs and PROMs? PREMs – Patient reported … Continue reading
Posted in News
Tagged Patient reported experience measures, Patient-Reported Outcome Measures, PREMS, PROMS, Wales neurological alliance, WNA
Comments Off on Measuring patient experience and success of services – can you help?
What matters to children with CFS/ME? devising a PROM
Research abstract: Background: Paediatric chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) is relatively common and disabling. Research is hampered because current patient-reported outcome measures (PROMs) do not capture outcomes that are important to children with CFS/ME. Aim The aim of this study was to … Continue reading
Posted in News
Tagged adolescents, children, Dr Esther Crawley, illness experience, Patient-Reported Outcome Measures, PROMS, teenagers
Comments Off on What matters to children with CFS/ME? devising a PROM
Better ways of assessing severity of illness and treatment outcomes needed for children with CFS/ME
Abstract Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (CFS/ME) in children is characterized by persistent or recurrent debilitating fatigue which results in a substantial reduction in activity. There is a growing interest in the use of questionnaires, or patient-reported outcome measures … Continue reading
Posted in News
Tagged children, Dr Esther Crawley, Patient-Reported Outcome Measures, PROMS
Comments Off on Better ways of assessing severity of illness and treatment outcomes needed for children with CFS/ME
A review of PROMS for CFS/ME
Patient-Reported Outcome Measures (PROMS) are questionnaires that researchers and clinicians ask patients to complete to assess the value of a treatment. The limitation of these measures were highlighted in 2011 by critics of the PACE trial. Researchers from England have reviewed … Continue reading
Posted in News
Tagged PACE, Patient-Reported Outcome Measures, PROMS, SF-36
Comments Off on A review of PROMS for CFS/ME