Tag Archives: PROMS

Systematic review of Primary Outcome Measurements for CFS/ME in randomized controlled trials

Systematic review of primary Outcome Measurements for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) in randomized controlled trials, by  Do-Young Kim, Jin-Seok Lee and Chang-Gue Son in J. Clin. Med. 2020, 9(11) 3463 [doi.org/10.3390/jcm9113463] (This article belongs to the Special Issue Chronic … Continue reading

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Bias caused by reliance on patient-reported outcome measures in non-blinded randomized trials

Bias caused by reliance on patient-reported outcome measures in non-blinded randomized trials: an in-depth look at exercise therapy for chronic fatigue syndrome by Michiel Tack, David M Tuller & Caroline Struthers in Fatigue: Biomedicine, Health & Behavior Vol 8, 2020 … Continue reading

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How common are depression & anxiety in adolescents with CFS?

How common are depression and anxiety in adolescents with chronic fatigue syndrome (CFS) and how should we screen for these mental health co-morbidities? A clinical cohort study, by Maria E Loades, Rebecca Read, Lucie Smith, Nina T Higson-Sweeney, Amanda Laffan, … Continue reading

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Development of a conceptual framework to underpin a health-related quality of life outcome measure in paediatric CFS/ME: prioritisation through card ranking

Development of a conceptual framework to underpin a health-related quality of life outcome measure in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): prioritisation through card ranking, by Roxanne M. Parslow, Nina Anderson, Danielle Byrne, Kirstie L Haywood, Alison Shaw & Esther … Continue reading

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Developing & pretesting a new patient reported outcome measure for paediatric CFS/ME

Developing and pretesting a new patient reported outcome measure for paediatric Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME): cognitive interviews with children, by Roxanne M. Parslow, Alison Shaw, Kirstie L Haywood, Esther Crawley in Journal of Patient-Reported Outcomes Vol 3, p 67 [First … Continue reading

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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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