Defining the minimally clinically important difference of the SF-36 physical function subscale for paediatric CFS/ME: triangulation using three different methods

Brigden, Amberly; Parslow, Roxanne; Gaunt, Daisy; Collin, Simon M.; Jones, Adam; Crawley, Esther

doi:10.1186/s12955-018-1028-2

Cited by 37 publications

(33 citation statements)

References 41 publications

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“…Compared with the ‘inactive’ class, being in the ‘light’ or ‘active’ class was associated with improved physical function by 10.4 and 15.3 points, respectively, which is greater than the minimal clinically importance difference for the SF36-PFS 23 42 43. There was some evidence to suggest that being in the ‘light’ class was associated with lower levels of fatigue compared with being in the ‘inactive’ class, but adjusting for time since diagnosis attenuated this association.…”

Section: Discussionmentioning

confidence: 90%

Physical activity patterns among children and adolescents with mild-to-moderate chronic fatigue syndrome/myalgic encephalomyelitis

Solomon-Moore

Jago

Beasant

et al. 2019

bmjpo

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ObjectiveChronic fatigue syndromemyalgic encephalomyelitis (CFS/ME) is relatively common among children and adolescents; however, little is known about the physical activity levels and patterns of this population. The aim of this study was to examine the underlying patterns of physical activity among youth with mild-to-moderate CFS/ME. Cross-sectional associations between physical activity patterns with self-reported physical function, pain, fatigue, anxiety and depression were also examined.DesignBaseline cross-sectional data from the Managed Activity Graded Exercise iN Teenagers and pre-Adolescents randomised controlled trial.PatientsChildren and adolescents (aged 8–17 years) diagnosed with mild-to-moderate CFS/ME who wore an accelerometer for at least three valid weekdays.AnalysesLatent profile analysis was used to identify physical activity patterns. Linear regression models examined associations between physical activity classes and self-reported physical function, pain, fatigue, anxiety and depression.Results138 children and adolescents (72.5% females) had valid data. Overall, participants did less than half the government recommended level of physical activity for children and adolescents, but not all were inactive: three (2.2%) did more than 1 hour of physical activity every day, and 13 (9.4%) achieved an average of 60 min a day. Adolescents (≥12 years) were less active than younger children, but activity levels were similar between genders. Three latent classes emerged from the data: ‘active’, ‘light’ and ‘inactive’. Compared with being ‘inactive’, being in the ‘light’ class was associated with greater self-reported physical function (10.35, 95% CI 2.32 to 18.38) and lower fatigue (−1.60, 95% CI −3.13 to −0.06), while being ‘active’ was associated with greater physical function (15.26, 95% CI 0.12 to 30.40), but also greater anxiety (13.79, 95% CI 1.73 to 25.85).ConclusionsPaediatricians need to be aware that physical activity patterns vary widely before recommending treatment.Clinical trial registrationISRCTN registry: 23 962 803

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Section: Discussionmentioning

confidence: 90%

Physical activity patterns among children and adolescents with mild-to-moderate chronic fatigue syndrome/myalgic encephalomyelitis

Solomon-Moore

Jago

Beasant

et al. 2019

bmjpo

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“…(this paper) (2) Which outcomes are important for children with CFS/ME and their parents? (paper under review) (3) What is the minimally clinically important difference in fatigue and SF-36 physical function scale?14 Participants and parents/carers were asked about each of these three areas. The answers to our research question on recovery are reported in this paper.…”

Section: Methodsmentioning

confidence: 99%

Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery

Harland

Parslow

Anderson

et al. 2019

bmjpo

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ObjectivesChronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is common in children and adolescents; however, little is known about how we should define recovery. This study aims to explore perceptions of recovery held by paediatric patients with CFS/ME and their parents.MethodsChildren with CFS/ME and their parents were recruited through a single specialist paediatric CFS/ME service. Data were collected through semistructured interviews with children and parents. The interview questions explored how participants would know if they/their child had recovered from CFS/ME. Thematic analysis was used to identify patterns within the data.ResultsTwenty-one children with CFS/ME, twenty mothers and two fathers were interviewed. Some children found it hard to define recovery as the illness had become a ‘new normal’. Others thought recovery would indicate returning to pre-morbid levels of activity or achieving the same activity level as peers (socialising, education and leisure activities). Increased flexibility in routines and the absence of payback after activities were important. The interviews highlighted the concept of recovery as highly individual with wide variation in symptoms experienced, type and level of activity that would signify recovery. Parents describe how changes in mood and motivation would signify their child’s recovery, but children did not reflect on this.ConclusionSome parents and children struggle to define what would constitute complete recovery. However, signs of recovery were more easily identifiable. Definitions of recovery went far beyond symptom reduction and were focused towards rebuilding lives.

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“…Qualitative patient interviews are an emerging approach to additionally explore score interpretation and contextualize estimates in terms of how a patient feels and functions. 17,18 This study aimed to establish MID and RD for the EORTC QLQ-MY20 utilizing both existing clinical trial data and prospective patient interviews. The aim of this study was thus to recommend MIDs and RDs for each scale of the EORTC QLQ-MY20 for use in MM patients.…”

Section: Introductionmentioning

confidence: 99%

“…Distribution‐based estimates do not directly consider what is meaningful to patients or clinicians, and will vary across samples, impeding consistent interpretation. Qualitative patient interviews are an emerging approach to additionally explore score interpretation and contextualize estimates in terms of how a patient feels and functions …”

Section: Introductionmentioning

confidence: 99%

Estimation of minimally important differences and responder definitions for EORTC QLQ‐MY20 scores in multiple myeloma patients

Sully

Trigg

Bonner

et al. 2019

European J of Haematology

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Objectives: Thresholds for the minimally important difference (MID) or responder definition (RD) in health-related quality-of-life (HRQoL) scores are required to interpret the impact of an intervention or change in the trajectory of the condition which is meaningful to patients. This study aimed to establish MID and RD for the European Organisation for Research and Treatment of Cancer Quality of Life Multiple Myeloma questionnaire (EORTC QLQ-MY20).Methods: A novel mixed-methods approach was applied by utilizing both existing clinical trial data and prospective patient interviews. Anchor-based, distributionbased, and qualitative-based estimates of meaningful change were triangulated to form recommended RDs for each scale of the EORTC QLQ-MY20. Anchor-based MIDs were summarized using weighted correlation.Results: Recommended MIDs were as follows: Disease Symptoms (DS 10 points), Side Effects of Treatment (SE 10 points), Body Image (BI 13 points), and Future Perspective (FP 9 points). Recommended RDs were as follows: DS (16 improvement; 11 worsening), SE (6 improvement; 9 worsening), BI (33 improvement; 33 worsening), and FP (11 improvement; 11 worsening). Conclusions:The study generated estimates of the MID and RD for each scale of the EORTC QLQ-MY20. Published estimates will enable investigators and clinicians to adopt these as standard for interpretation and for hypothesis testing. Consequently, analyses from trials of different interventions can be more comparable. K E Y W O R D SEORTC QLQ-MY20, interpretation guidelines, meaningful change, minimally important difference, mixed methods, multiple myeloma, qualitative interviews, quality of life, responder definition Kate Sully and Andrew Trigg are contributed equally to this work.This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

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Defining the minimally clinically important difference of the SF-36 physical function subscale for paediatric CFS/ME: triangulation using three different methods

Cited by 37 publications

References 41 publications

Physical activity patterns among children and adolescents with mild-to-moderate chronic fatigue syndrome/myalgic encephalomyelitis

Physical activity patterns among children and adolescents with mild-to-moderate chronic fatigue syndrome/myalgic encephalomyelitis

Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery

Estimation of minimally important differences and responder definitions for EORTC QLQ‐MY20 scores in multiple myeloma patients

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