Tag Archives: PROMS

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

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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

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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

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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

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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

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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

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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

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