Evidence map›Paper›PMID 38172406›Full record

ArticleThe patient2024

Development and Testing of a Chronic-Disease Patient Experience Mapping Toolbox.

Elisabeth M Oehrlein, Silke Schoch, Kelsie Majercak, Laura Elisabeth Gressler, Ryan C Costantino, T Rosie Love, Eleanor M Perfetto, National Health Council’s Patient Experience Mapping Workgroup

Open access · hybridAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in The patient, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.

0numbers the graph read from it
0cells of the map it votes in
7citing papers in PubMed
2.3field-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

7 citing papers in PubMed, 6 citations in OpenAlex.

  1. Article
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  5. US food allergy patients' experiences, priorities, and needs: A qualitative study.The journal of allergy and clinical immunology. Global · 2025
    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 4 institutions in 2 countries.

Elisabeth M OehrleinNational Health Council, 1730 M St. NW Suite 650, Washington, DC, 20036, USA. eoehrlein@appliedpx.com.
Silke SchochNational Health Council, 1730 M St. NW Suite 650, Washington, DC, 20036, USA.
Kelsie MajercakNational Health Council, 1730 M St. NW Suite 650, Washington, DC, 20036, USA.
Laura Elisabeth GresslerDivision of Pharmaceutical Evaluation and Policy, College of Pharmacy, University of Arkansas for Medical Sciences, 4301 W Markham St, Little Rock, AR, 72205, USA.
Ryan C CostantinoNational Health Council, 1730 M St. NW Suite 650, Washington, DC, 20036, USA.
T Rosie LoveSchool of Pharmacy, University of Maryland, 20 N. Pine St, Baltimore, MD, 21201, USA.
Eleanor M PerfettoNational Health Council, 1730 M St. NW Suite 650, Washington, DC, 20036, USA.
National Health Council’s Patient Experience Mapping Workgroup
National Health Council · USData Management (Italy) · ITUniversity of Arkansas for Medical Sciences · USUniversity of Maryland, Baltimore · US

Funding

Microwave-Enhanced Luminescence to Detect Growth FactorsR43CA094404 · NCI · MIRARI BIOSCIENCES, INC. · PI MARTIN, MARK T · 2002 to 2003
$270k
NCI NIH HHS R43 CA094404
6 · The paper itself

Abstract

backgroundStakeholders increasingly expect research and care delivery to be guided by and to optimize patient experiences. However, standardized tools to engage patients to gather high-quality data about their experiences, priorities, and desired outcomes are not publicly available. The objective of this study was to develop and test a Toolbox with a disease-agnostic interview guide template and accompanying resources to assist researchers in engaging patients living with chronic disease in a dialogue about their experiences.

methodsGuided by a multidisciplinary workgroup, a targeted literature review (PubMed) was conducted, followed by group discussions to identify/thematically organize patient experience concepts, development of a conceptual model, and drafting of an interview guide template and patient-facing visual. Materials were tested/refined via cognitive (n = 5) and pilot (n = 30) interviews conducted virtually with US patients diagnosed with chronic/potentially disabling conditions from December 2020 to April 2021. Patient-facing tools were reviewed by health literacy experts for applicability/accessibility. English-speaking adults who self-reported receiving a chronic condition diagnosis at least 6 months prior participated in a 60-90 min interview.

resultsPatient experience concepts were organized thematically under three domains: (1) life before a diagnosis, (2) experiences getting a diagnosis, and (3) experiences living with a diagnosis. A plain language consent sheet template, interview guide template, and patient experience conceptual model were developed and revised based on input from interviewees, interviewers, and the workgroup.

conclusionsA disease-agnostic patient-engagement Toolbox was developed and tested to capture patient experience data. These materials can be customized based on study objectives and leveraged by various stakeholders to identify opportunities to enhance the patient centricity of healthcare delivery and research.

Indexed as

Interviews as TopicAdultAgedChronic DiseaseFemaleHealth LiteracyHumansMaleMiddle AgedPatient Participation

Identifiers

PMID38172406
PMCPMC11039502
OpenAlexW4390571217

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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.