ArticleThe patient2015
Identifying the benefits and risks of emerging treatments for idiopathic pulmonary fibrosis: a qualitative study.
Article in The patient, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 2 of them syntheses that pooled 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.
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.
Who cites it
16 citing papers in PubMed, 2 syntheses or guidelines pooled it, 22 citations in OpenAlex.
- The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review.European respiratory review : an official journal of the European Respiratory Society · 2020Pooled it
- Opportunities and challenges for the inclusion of patient preferences in the medical product life cycle: a systematic review.BMC medical informatics and decision making · 2019Pooled it
- Identifying Challenges and Solutions for Improving Access to Mental Health Services for Rural Youth: Insights from Adult Community Members.International journal of environmental research and public health · 2024Article
- Eating and drinking experience in patients with idiopathic pulmonary fibrosis: a qualitative study.BMJ open · 2024Article
- GM1-gangliosidosis: The caregivers' assessments of symptom impact and most important symptoms to treat.American journal of medical genetics. Part A · 2023Article
- Patient Preferences in the Medical Product Life Cycle: What do Stakeholders Think? Semi-Structured Qualitative Interviews in Europe and the USA.The patient · 2019Article
- Gaps in care of patients living with pulmonary fibrosis: a joint patient and expert statement on the results of a Europe-wide survey.ERJ open research · 2019Article
- Collecting patient preference information using a Clinical Data Research Network: demonstrating feasibility with idiopathic pulmonary fibrosis.Patient preference and adherence · 2019Article
- Patient Involvement in the Lifecycle of Medicines According to Belgian Stakeholders: The Gap Between Theory and Practice.Frontiers in medicine · 2018Article
- Development and Pretesting of a Questionnaire to Assess Patient Experiences and Satisfaction with Medications (PESaM Questionnaire).The patient · 2017Article
- Art and Science of Instrument Development for Stated-Preference Methods.The patient · 2017Article
- What patients with pulmonary fibrosis and their partners think: a live, educative survey in the Netherlands and Germany.ERJ open research · 2017Article
- A Framework for Instrument Development of a Choice Experiment: An Application to Type 2 Diabetes.The patient · 2016Article
- The Patient Voice: At the Intersection of a US Regulatory Revolution.The patient · 2016Article
- The imperative for patient-centred research to develop better quality services in rare diseases.The patient · 2015Article
- Priorities and Treatment Preferences among Surgery-Naive Patients with Moderate to Severe Open-Angle Glaucoma.Ophthalmology. GlaucomaArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveIdiopathic pulmonary fibrosis (IPF) is a rare, progressive, and fatal disease, with very few therapeutic options. Given a paucity of qualitative research to the perspective of patients and other stakeholders in IPF, we sought to identify issues associated with the benefits and risks of emerging treatments and other issues relevant to design of a survey for assessing patient preferences for IPF treatments.
methodsSemi-structured key informant interviews were conducted, predominately via telephone, with a range of stakeholder perspectives identified through partnership with a national advocacy organization using a combination of purposive and snowball sampling. Stakeholders were asked guiding questions related to emerging trends impacting IPF patients, likely benefits and risks of emerging treatments, and the outcomes most relevant to patients. Detailed and de-identified field notes were analyzed using interpretive phenomenological analysis (IPA), and a taxonomy of key themes was developed.
resultsA total of 20 interviews (participation rate 63%) were conducted with patients/advocates/caregivers (n = 7), providers/researchers (n = 8), and experts associated with policy/industry (n = 5). All interviewees expressed great hope with regards to emerging treatments. Three super-ordinate themes emerged: impact of emerging therapies (spanning the benefits, risks, and unintended consequences of emerging therapies); documenting the patient experience (spanning measuring patient-reported outcomes and quality of life and understanding the burden of disease); and coping with disease progression (including symptom mitigation, lung transplantation, and end-of-life considerations).
conclusionsIn identifying issues associated with emerging IPF treatments, we demonstrate the value of qualitative research in understanding the views of diverse stakeholders and in providing a basis for future survey research. As such, qualitative methods should play an important role in understanding the benefits and risks of emerging therapies and in promoting patient-centered drug development.
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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.