Evidence map›Paper›PMID 30564944›Full record

ArticleClinical rheumatology2019

It is time for an organised, scientific approach to the application of patient-reported outcome measures in clinical studies and trials.

Stephen P McKenna

Erratum issuedAbstract readEditorial
PubMed Publisher
In one paragraph

Article in Clinical rheumatology, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

1 author.

Stephen P McKennaGalen Research, Manchester, UK. smckenna@galen-research.com.ORCID http://orcid.org/0000-0003-4238-8333

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Too often, clinicians and researchers assume that patient-reported outcome measures (PROMs) are simply designed, can be changed to suit specific circumstances and should be freely available for use without seeking permission. If a version is not easily available, they believe they can produce a new translation without relevant experience or expertise. Copyright issues are inconvenient and commonly ignored, despite some journals requesting confirmation from authors that permission had been granted for use of copyrighted materials. When informed that authors of an article did not have such permission, the response from an editor was that nothing could be done as he had to rely on the word of the authors.In fact, high quality PROMs are carefully designed, developed for new cultures by means of proven standardised methodologies, carefully re-validated in the new culture and then administered by a responsible organisation to ensure that they are used appropriately in studies. If such care has not been taken, questions should be raised about the quality of the measure and the information it generates.Several problems have arisen with the Ankylosing Spondylitis Quality of Life Questionnaire (ASQoL). This is probably because it is recognised as the most appropriate measure of quality of life for people with Ankylosing Spondylitis and has been widely used in international clinical trials and studies. Fifty-seven official language adaptations of the questionnaire have been produced. Unfortunately, as a result of unauthorised adaptation and use, questions are raised about the validity of several publications that have used the ASQoL.

Indexed as

Patient Reported Outcome MeasuresClinical Studies as TopicHumansLanguageQuality of LifeResearch DesignSpondylitis, AnkylosingSurveys and QuestionnairesAdaptationsAnkylosing Spondylitis Quality of Life Questionnaire (ASQoL)CopyrightPatient-reported outcomes

Identifiers

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.