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Record W2116927394 · doi:10.5581/1516-8484.20130118

Issues in the measurement of quality of life in hemophilia

2013· article· en· W2116927394 on OpenAlexaff
Brian M. Feldman

Bibliographic record

VenueRevista Brasileira de Hematologia e Hemoterapia · 2013
Typearticle
Languageen
FieldMedicine
TopicHemophilia Treatment and Research
Canadian institutionsHospital for Sick ChildrenUniversity of TorontoSickKids Foundation
Fundersnot available
KeywordsObservational studyQuality of life (healthcare)HaemophiliaScale (ratio)MedicineQuality (philosophy)Independence (probability theory)PsychologyFamily medicinePediatricsPathologyNursingStatisticsMathematicsEpistemology

Abstract

fetched live from OpenAlex

It is widely claimed that can't manage what you don't measure. Likely this quote is derived from statements made by Lord Kelvin to the Institution of Civil Engineers. In his 1883 address, he claimed: ...when you cannot measure it, when you cannot express it in numbers, your knowledge is of a meager and unsatisfactory kind... (1) A number of tools have been developed to accurately assess our hemophilia patients' progress and response to changing treatments. These include radiographic scores (like the Pettersson (X-ray) score and the compatible magnetic resonance imaging score), musculoskeletal assessment tools (like the Hemophilia Joint Health Scale), functional assessment questionnaires (like the Haemo-philia Activities List) or observational tools (like the Functional Independence Scale for Haemophilia), as well as summary measures of health - which are often called quality of life (QoL) or health-related quality of life (HRQL) tools(2-15). These tools have given clinicians and researchers powerful new ways to describe their patients' illnesses, but there are a number of considerations that should be addressed in future work. This commentary will address some of these issues.

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.

How this classification was reachedexpand

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)0.002
metaresearch head score (Gemma)0.001
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesnone
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Observational · Consensus signal: Observational
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.008
Threshold uncertainty score0.578

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0020.001
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0010.000
Bibliometrics0.0000.001
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 head0.078
GPT teacher head0.356
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

Classification

machine, unvalidated

Machine predicted; a candidate call from one teacher head, not a consensus.

The models applied no category: nothing in the taxonomy fit this work.
Study designObservational
Domainnot available
GenreEmpirical

How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".

Quick stats

Citations5
Published2013
Admission routes1
Has abstractyes

Explore more

Same venueRevista Brasileira de Hematologia e HemoterapiaSame topicHemophilia Treatment and ResearchFrench-language works237,207