Evidence map›Paper›PMID 31522359›Full record

ArticlePituitary2019

Development of a novel patient-reported measure for acromegaly: the Acro-TSQ.

Maria Fleseriu, Leon Fogelfeld, Murray B Gordon, Jill Sisco, Hilary H Colwell, William H Ludlam, Asi Haviv, Susan D Mathias

Open access · hybridAbstract read
In one paragraph

Article in Pituitary, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
15citing papers in PubMed, 2 pooled it
2.1field-weighted citation impact, top 12% of its field
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

15 citing papers in PubMed, 2 syntheses or guidelines pooled it, 21 citations in OpenAlex.

  1. Pooled it
  2. Pooled it
  3. Trial
  4. Trial
  5. The acromegaly patient experience: burden of treatment and quality of life.The Journal of clinical endocrinology and metabolism · 2026
    Review
  6. Article
  7. Article
  8. Article
  9. Review
  10. Review
  11. Multidisciplinary management of acromegaly: A consensus.Reviews in endocrine & metabolic disorders · 2020
    Review
  12. Article
  13. Article
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors at 5 institutions in 1 country.

Maria FleseriuDepartments of Neurosurgery and Medicine, Northwest Pituitary Center, Oregon Health and Science University, 3303 SW Bond Ave, CH8N, Portland, OR, 97239, USA. fleseriu@ohsu.edu.ORCID http://orcid.org/0000-0001-9284-6289
Leon FogelfeldJohn H. Stroger Jr. Hospital of Cook County, Rush University Medical Center, Chicago, IL, USA.
Murray B GordonAllegheny Neuroendocrinology Center, Allegheny General Hospital, Pittsburgh, PA, USA.
Jill SiscoAcromegaly Community, Grove, OK, USA.
Hilary H ColwellHealth Outcomes Solutions, Winter Park, FL, USA.
William H LudlamChiasma, Inc, Waltham, MA, USA.
Asi HavivChiasma, Inc, Waltham, MA, USA.
Susan D MathiasHealth Outcomes Solutions, Winter Park, FL, USA.
Chiasma (United States) · USHealth Outcomes Solutions (United States) · USAllegheny General Hospital · USOregon Health & Science University · USRush University Medical Center · US

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

purposeSomatostatin analogs (SSAs) represent a mainstay of medical treatment for acromegaly, currently available as either intramuscular or deep subcutaneous injections. Patient-reported outcomes (PROs) are increasingly common as relevant outcomes in studies of acromegaly and its treatment, but there are no validated PRO measures available that focus on the disease burden and the impact of treatment, specifically designed for use in patients with acromegaly. We sought to develop a new and unique PRO measure, the Acromegaly Treatment Satisfaction Questionnaire (Acro-TSQ).

methodsConcept elicitation (CE) interviews were conducted with acromegaly patients in the United States receiving SSA injections at a stable dose for ≥ 6 months. A questionnaire was drafted based on these interviews; combined CE and cognitive debriefing (CE/CD) interviews were then conducted to confirm the content, clarity, and relevance of the questionnaire.

resultsNineteen subjects completed interviews [n = 9 CE, n = 10 CE/CD; n = 15 Lanreotide Depot/Autogel (Somatuline), n = 4 Octreotide LAR (Sandostatin LAR)]. Most subjects responded positively when asked about the effectiveness of their current treatment; however, breakthrough symptoms, injection site reactions, and side effects were commonly reported and had negative impacts on social and emotional well-being and daily activities. All 10 subjects involved in debriefing interviews found the questionnaire to be relevant, easy to complete, and found the response options to be clear. The resulting 26-item Acro-TSQ covers symptoms and symptom control, gastrointestinal side effects and their impact on daily activities, the emotional impact of treatment, convenience and ease of use, and overall satisfaction.

conclusionsThe Acro-TSQ is a novel PRO, focused on both disease burden and impact of treatment; it was found to be comprehensive, clear, and relevant for patients with acromegaly receiving injectable SSA treatment.

Indexed as

AcromegalyAdultBromocriptineCabergolineFemaleHuman Growth HormoneHumansInterviews as TopicMaleMiddle AgedOctreotidePeptides, CyclicPersonal SatisfactionSomatostatinSurveys and QuestionnairesBromocriptineCabergolineHuman Growth HormonelanreotideOctreotidepasireotidepegvisomantPeptides, CyclicSomatostatinAcromegalyAcro-TSQPatient reported outcomesQuality of lifeQuestionnaire

Identifiers

PMID31522359
PMCPMC6842345
OpenAlexW2973209873

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.