Evidence map›Paper›PMID 17034633›Full record

ArticleHealth and quality of life outcomes2006

Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims: draft guidance.

U.S. Department of Health and Human Services FDA Center for Drug Evaluation and Research, U.S. Department of Health and Human Services FDA Center for Biologics Evaluation and Research, U.S. Department of Health and Human Services FDA Center for Devices and Radiological Health

5 registry-linked trialsAbstract read
In one paragraph

Article in Health and quality of life outcomes, 2006. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to 5 registered trials, which are not on this map. Cited by 2,336 papers, 18 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
2,336citing papers in PubMed, 18 pooled it
–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.

NCT00939263 unknown statusnot on this mapstarted 2011, after this paper: background citation

Development, Validation and Evaluation of an Adult and Pediatric Eosinophilic Esophagitis Activity Index: A Prospective Multicenter Study

TypeobservationalSponsorInsel Gruppe AG, University Hospital BernRan2011 to 2016Enrolled650ConditionsDeglutition Disorders, Esophageal Diseases, EosinophiliaArmsassessment of disease activity using the EEsAI
NCT02616484 phase3active not recruitingnot on this mapstarted 2020, after this paper: background citation

Phase 3 Trial of Dichloroacetate in Pyruvate Dehydrogenase Complex Deficiency:

TypeinterventionalSponsorSaol Therapeutics IncRan2020 to 2025Enrolled34ConditionsPyruvate Dehydrogenase Complex DeficiencyArmsDichloroacetate (DCA), Placebo, Genotype
NCT03220178 phase4terminatednot on this mapstarted 2017, after this paper: background citation

PRECYCLE: Multicenter, Randomized Phase IV Intergroup Trial to Evaluate the Impact of eHealth-based Patient Reported Outcome (PRO) Assessment on Quality of Life in Patients With Hormone Receptor Positive, HER2 Negative Locally Advanced or Metastatic Breast Cancer Treated With Palbociclib and an Aromatase Inhibitor- or Palbociclib and Fulvestrant

TypeinterventionalSponsorPalleos Healthcare GmbHRan2017 to 2021Enrolled532ConditionsBreast NeoplasmArmsPalbociclib, Fulvestrant, Anastrozole, Letrozole, Exemestane
NCT04541784 nacompletednot on this mapstarted 2019, after this paper: background citation

Effectiveness of a Multidimensional Mobile App Intervention "WOMAN-PRO III" to Reduce Postsurgical Symptom Induced Distress in Patients With Vulvar Neoplasia: A Mixed Methods Project

TypeinterventionalSponsorSt.Gallen University of Applied SciencesRan2019 to 2021Enrolled18ConditionsVulvar NeoplasmArmsWOMAN-PRO III, Three counselling sessions with gynaecology-oncology nurses
NCT05154708 terminatednot on this mapstarted 2022, after this paper: background citation

Impact on the Quality of Life of Dialysis Patients of the Routine Collection of Symptoms by the Patients Themselves, With Feedback to the Dialysis Team - Pilot Study

TypeobservationalSponsorCentral Hospital, Nancy, FranceRan2022 to 2024Enrolled65ConditionsPatients Reported Outcomes
3 · Its place in the literature

Who cites it

2,336 citing papers in PubMed, 18 syntheses or guidelines pooled it.

  1. Pooled it
  2. Equity, evidence and indigenous knowledges in PROMs in Australian injury research: a systematic review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
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  7. 'What' and 'How' to Measure in Allergy and Clinical Immunology: A Systematic Review of Core Outcome Sets and Outcome Harmonisation Processes.Clinical and experimental allergy : journal of the British Society for Allergy and Clinical Immunology · 2026
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  17. Measurement properties of Chinese-version assessment tools of health-related quality of life in patients with stroke: a systematic review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025
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2,276 more citing papers are in PubMed but not listed here.

4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

3 authors.

U.S. Department of Health and Human Services FDA Center for Drug Evaluation and Research
U.S. Department of Health and Human Services FDA Center for Biologics Evaluation and Research
U.S. Department of Health and Human Services FDA Center for Devices and Radiological Health

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

This guidance describes how the FDA evaluates patient-reported outcome (PRO) instruments used as effectiveness endpoints in clinical trials. It also describes our current thinking on how sponsors can develop and use study results measured by PRO instruments to support claims in approved product labeling (see appendix point 1). It does not address the use of PRO instruments for purposes beyond evaluation of claims made about a drug or medical product in its labeling. By explicitly addressing the review issues identified in this guidance, sponsors can increase the efficiency of their endpoint discussions with the FDA during the product development process, streamline the FDA's review of PRO endpoint adequacy, and provide optimal information about the patient's perspective of treatment benefit at the time of product approval. A PRO is a measurement of any aspect of a patient's health status that comes directly from the patient (i.e., without the interpretation of the patient's responses by a physician or anyone else). In clinical trials, a PRO instrument can be used to measure the impact of an intervention on one or more aspects of patients' health status, hereafter referred to as PRO concepts, ranging from the purely symptomatic (response of a headache) to more complex concepts (e.g., ability to carry out activities of daily living), to extremely complex concepts such as quality of life, which is widely understood to be a multidomain concept with physical, psychological, and social components. Data generated by a PRO instrument can provide evidence of a treatment benefit from the patient perspective. For this data to be meaningful, however, there should be evidence that the PRO instrument effectively measures the particular concept that is studied. Generally, findings measured by PRO instruments may be used to support claims in approved product labeling if the claims are derived from adequate and well-controlled investigations that use PRO instruments that reliably and validly measure the specific concepts at issue. The glossary defines many of the terms used in this guidance. In particular, the term instrument refers to the actual questions or items contained in a questionnaire or interview schedule along with all the additional information and documentation that supports the use of these items in producing a PRO measure (e.g., interviewer training and instructions, scoring and interpretation manual). The term conceptual framework refers to how items are grouped according to subconcepts or domains (e.g., the item walking without help may be grouped with another item, walking with difficulty, within the domain of ambulation, and ambulation may be further grouped into the concept of physical ability). FDA's guidance documents, including this guidance, do not establish legally enforceable responsibilities. Instead, guidance documents describe the Agency's current thinking on a topic and should be viewed only as recommendations, unless specific regulatory or statutory requirements are cited. The use of the word should in Agency guidance documents means that something is suggested or recommended but not required. First publication of the Draft Guidance by the Food and Drug Administration--February 2006.

Indexed as

Guidelines as TopicPatient SatisfactionTreatment OutcomeClinical Trials as TopicData Interpretation, StatisticalDrug IndustryHumansPain MeasurementProduct LabelingPsychometricsQuality of LifeSurveys and QuestionnairesUnited StatesUnited States Food and Drug Administration

Identifiers

PMID17034633
PMCPMC1629006

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

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.