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Paediatric health-related quality of life: what is it and why should we measure it?

2016· article· en· W2528684227 on OpenAlex

Why this work is in the frame

A frame that forgets how it found something cannot be audited. These are the routes that admitted this work.

affAt least one author lists a Canadian institution in the pinned OpenAlex snapshot.

Bibliographic record

VenueArchives of Disease in Childhood · 2016
Typearticle
Languageen
FieldMedicine
TopicChildhood Cancer Survivors' Quality of Life
Canadian institutionsChildren's Hospital of Eastern OntarioUniversity of OttawaLaurentian University
Fundersnot available
KeywordsMedicineMeasure (data warehouse)Child healthQuality of life (healthcare)Quality (philosophy)PediatricsFamily medicineNursingData mining

Abstract

fetched live from OpenAlex

As a paediatrician, you follow a number of children with chronic health conditions in your practice. You provide them with a variety of therapies and would like to know whether your treatments are having an impact, in particular whether there has been a change in the patient's health-related quality of life (HRQOL). HRQOL measures have the potential to augment the information that clinicians have available, to enhance their clinical decisions and assess the impact of a chronic health condition on a child's life. How should you try to capture this information? ### What is health-related quality of life? The WHO defines quality of life (QOL) as ‘a child's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns’1 and HRQOL) as ‘a child's goals, expectations, standards or concerns about their overall health and health-related domains’.1 ,2 That being said, many other definitions of HRQOL have been proposed over the years, and a variety of terms are currently used.3 ,4 Although the term QOL is sometimes used interchangeably with HRQOL, QOL is actually a broader construct that encompasses aspects of life that may not be amenable to healthcare services.5 Thus, spirituality and financial resources are, for example, often included in QOL, but are not necessarily included as part of HRQOL. In this paper, we regard QOL in children as a multidimensional subjective concept that includes social, emotional, cognitive and physical functioning as well as cultural aspects of the child and family, while HRQOL incorporates measures of physical symptoms, functional status and disease impact on psychological and social functioning.6 ,7 Children growing up with chronic health conditions (or suffered a severe acute illness and experience late effects) are at greater risk for …

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.

Full frame distilled prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.

metaresearch head score (Codex)0.001
metaresearch head score (Gemma)0.001
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesMeta-epidemiology (narrow)
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Observational · Consensus signal: Observational
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.264
Threshold uncertainty score1.000

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0010.001
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0010.000
Bibliometrics0.0000.000
Science and technology studies0.0000.000
Scholarly communication0.0000.000
Open science0.0000.000
Research integrity0.0000.000
Insufficient payload (model declined to judge)0.0000.000

Machine scores (provisional)

The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.

Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.

Opus teacher head0.052
GPT teacher head0.330
Teacher spread0.278 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it