Is retrospective assessment of health-related quality of life valid?

Background: Health-related quality of life (HRQoL) is a commonly used health outcome. For many acute conditions (e.g. fractures), retrospective measurement of HRQoL is necessary to establish pre-morbid health status. However, the validity of retrospective measurement of HRQoL following an intervening significant health event has not been established. The aim of this study was to test the validity of retrospective measurement (recall) of HRQoL by using a test-retest design to measure reliability and agreement between prospective and retrospective patient-reported HRQoL before and after an intervening health event (elective orthopaedic surgery). Method: Participants were recruited from the pre-admission clinic of a metropolitan hospital. Participants were assessed for their HRQoL using the EQ-5D-5L at two time-points; prospectively at 2 weeks prior to their date of surgery and then retrospectively (recalling their pre-operative health) following elective hip or knee joint replacement surgery. Prospective measurements were compared with retrospective measurements for the five domain scores (nominal data) using intra-class correlation and for the EQ-Index score and EQ-Visual Analogue Scale (VAS) score (continuous data), using Pearson’s correlation. Agreement was tested in continuous variables using Lin’s coefficient of concordance (pc) and Bland-Altman plots. Results: One hundred seventy-four patients consented to participate. Eighty-eight paired prospective and retrospective scores were collected and there was a median between-test period of 15 days. At a group level, the prospective measurements were similar to the retrospective measurements; the modes and means of the five domain scores were not different and the mean differences (MD) between the scores for EQ-Index (MD = 0.02, on a scale of 0–1) and EQ-VAS (MD = 0.53, on a scale of 1–100) were negligible. However, the correlation of paired scores was varied; the range of domain score correlations was 0.52 to 0.74, the concordance was substantial for the EQ-Index scores (pc = 0.76, 95% CI = 0.66, 0.84) and moderate for the EQ-VAS scores (pc = 0.46, 95% CI = 0.28, 0.61). Conclusion: Agreement between prospective and retrospective measurements was high at a group level and moderate to substantial at an individual level. Retrospective measurement of HRQoL using the EQ-5D-5L in an orthopaedic clinical context is a valid alternative to using reference data to estimate baseline or pre-morbid health status

Why unidimensional pain measurement prevails in the pediatric acute pain context and what multidimensional self-report methods can offer

Although pain is widely recognized to be a multidimensional experience and defined as such, unidimensional pain measurement focusing on pain intensity prevails in the pediatric acute pain context. Unidimensional assessments fail to provide a comprehensive picture of a child’s pain experience and commonly do little to shape clinical interventions. The current review paper overviews the theoretical and empirical literature supporting the multidimensional nature of pediatric acute pain. Literature reporting concordance data for children’s self-reported sensory, affective and evaluative pain scores in the acute pain context has been reviewed and supports the distinct nature of these dimensions. Multidimensional acute pain measurement holds particular promise for identifying predictive markers of chronicity and may provide the basis for tailoring clinical management. The current paper has described key reasons contributing to the widespread use of unidimensional, rather than multidimensional, acute pediatric pain assessment protocols. Implications for clinical practice, education and future research are considered

Health and support service needs of individuals with disability from culturally and linguistically diverse backgrounds : a scoping review protocol

Background: All individuals should have the right to engage meaningfully in occupations that meet their aspirations and life goals as well as promote their health and well-being. For individuals with disability, meaningful engagement in occupations is supported by timely, effective, and adaptive health and support services. However, research has revealed multiple barriers preventing utilization of these services by individuals with disability from culturally and linguistically diverse (CALD) backgrounds. This review aims to identify gaps and solutions in health and support services of individuals with disability from CALD backgrounds to meaningfully engage in occupations. Methods: A scoping review will be conducted in accordance with the Joanna Briggs Institute (JBI) methodology for scoping reviews. A detailed search strategy will be used to search CINAHL, PubMed, Embase, Scopus, PsycInfo, JBI, and Cochrane Library, as well as grey literature in Trove, Mednar, and OpenGrey from January 1974 onwards. Two reviewers will independently screen all citations and full-text articles for eligibility against specific inclusion and exclusion criteria. Potential conflicts will be resolved through discussion. Data will be extracted and presented in a diagrammatic or tabular form accompanied by a narrative summary. Discussion: The scoping review will present the health and support service needs of individuals with disability from CALD backgrounds and will extend the current reviews as it focuses the engagement in meaningful occupation. Findings from this review have the potential to inform local policy discussions and practice-based disability care. Systematic review registration: Open Science Framework (10.17605/OSF.IO/HW2FB)

On lessons learned in the Gambia

Eight years ago, I was sitting on a narrow wooden bench at the back of a small lecture theater at the University of Sydney when the lecturer on normative ethics mentioned a quote often misattributed to Joseph Stalin: “A single death is a tragedy. A million deaths are a statistic.” I think of those words often. I thought of them a year ago, as I sat on a broken plastic chair beside a bare metal bed in a hospital without doctors, deep in the West African bush, while I manually ventilated a 3-month-old infant with pneumonia. Only minutes earlier, his mother, a young Fula woman with indigo ink facial markings and red-gold hoop earrings, had called out in a language I did not understand but with an urgency I did. Her son was still, too still to be sleeping

[In Press] Electrical injury : chronic pain, somatosensory dysfunction, post traumatic stress and movement disorders

Introduction and aims: We aimed in this case series to identify shortcomings in assessment of long-term painful and psychosocial consequences of EI and to demonstrate the value of biopsychosocial assessment and the commonalities in outcomes. Methods: We retrospectively analyzed 15 cases from 2004 to 2019 of adult claimants assessed in a medico-legal practice for complex chronic pain disorders secondary to EI. Extensive biopsychosocial information, including 165 data items on pre- and post-injury observations, were collected on each. Cutaneous and deep pressure somatosensory examination was performed and questionnaires for psychological evaluation and restless legs syndrome completed. A comprehensive literature review and descriptive analysis was conducted. Results: Pre-injury, most claimants worked (12/15), did not receive government benefits (14/15) and had no primary pain disorder (9/15). EIs were severe (14/15), where chronic post-traumatic pain, typically high impact with nociplastic features, was regional in 5 and widespread in 10. Somatosensory signs in wide distribution in all cases implied central sensitization. Movement disorders included digital dyskinesia (5/15), involuntary muscle contractions (7/15) and restless legs syndrome in 7. Diagnostic and Statistical Manual of Mental Disorders (DSM-5) post-traumatic stress disorder (PTSD) criteria were met in 12/15, and 14/15 experienced depression and impaired sleep. Severe social impacts, notably including loss of employment resulting in financial stresses, were common. Conclusions: Biological, psychological and social consequences of EI revealed extensive similarities. Disability was generally severe, moreso than indicated in clinical records, influenced by relative paucity of primary pathology, inadequate pain-orientated somatosensory testing and insufficient application of biopsychosocial assessment and management

The Modern Medical Student Manual : a book review

Chris Lovejoy’s book ‘The Modern Medical Student Manual’ combines personal anecdote and a philosophical approach that stands out for the shortness of its nature and the uniqueness of its disposition. There is something to be said for a short guide for medical students written by a recently graduated Foundation Year doctor. While the book occasionally falls short of the easy ebb and flow of other authors in the field, and perhaps, at times, attempts to stretch beyond its reach, it more than makes up in the authenticity of its voice and the quality of its personal reflection

Prevalence of trial registration varies by study characteristics and risk of bias

Objectives: The objective of this study was to determine the prevalence of trial registration in health research, whether trial registration status and timing vary depending on trial characteristics, and the relationship between trial registration status and risk of bias. Study Design and Setting: We systematically reviewed all clinical trials published from January to June 2017 in 28 high- and low-impact factor general and specialty medicine journals. Results: We identified 370 trials and assessed risk of bias in 183 trials. Trial registration rates were high; 95% of trials were registered prospectively or retrospectively before enrollment completion. Larger sample size, multiple recruitment countries, and primary industry funding were all predictors of earlier trial registration. Prospectively registered trials had a significantly lower risk of bias compared to unregistered trials across all domains. Prospectively registered trials had a similar risk of bias compared to retrospectively registered trials across four out of six domains, and a lower risk of bias across the remaining two domains. Conclusion: Trial registration is an imperfect proxy for risk of bias. Systematic reviewers should assess risk of bias on a case-by-case basis and conduct sensitivity analyses excluding high risk of bias studies. In the longer term, mechanisms should be implemented to facilitate prospective registration of all trials