ArticleJournal of genetic counseling2021
Evaluating co-created patient-facing materials to increase understanding of genetic test results.
Article in Journal of genetic counseling, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 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
27 citing papers in PubMed, 2 syntheses or guidelines pooled it, 37 citations in OpenAlex.
- Evaluating co-design approaches with parents in paediatric healthcare: a systematic review.BMC health services research · 2025Pooled it
- Navigating Disrupted Puberty: Development and Evaluation of a Mobile-Health Transition Passport for Klinefelter Syndrome.Frontiers in endocrinology · 2022Pooled it
- Adapting mainstreaming genetic education and clinical communication materials for cancer patients of varying backgrounds.Patient education and counseling · 2026Article
- 'Living Well With a PICC at Home': Co-Design and Evaluation of a Peripherally Inserted Central Catheter (PICC) Booklet.Journal of advanced nursing · 2026Article
- From patients to partners: evaluating a co-designed website for congenital hypogonadotropic hypogonadism.Endocrine connections · 2026Article
- What kind of information is requested by patients and families with genetic disorders? : The analysis of an online patient community in South Korea.Journal of community genetics · 2025Article
- Article
- Assessing the Impact of Simplified Language on a Patient-Facing Pharmacogenetic Report: A User Comprehension Study.Journal of personalized medicine · 2025Article
- Nursing's Role in Advancing Care for Rare Genetic Diseases.The Nursing clinics of North America · 2025Review
- Evaluating the understandability and actionability of Japanese human papillomavirus vaccination educational materials on cervical cancer.Health promotion international · 2025Article
- Picture this: Evaluating the efficacy of genetic counseling visual aids.Journal of genetic counseling · 2024Article
- Negative results from DNA-based population screening for adult-onset diseases: the recipients' experience.Journal of community genetics · 2024Article
- Usability, Engagement, and Report Usefulness of Chatbot-Based Family Health History Data Collection: Mixed Methods Analysis.Journal of medical Internet research · 2024Article
- 'Research ethics · 2024Article
- Consumer-oriented (patient and family) outcomes from nursing in genomics: a scoping review of the literature (2012-2022).Frontiers in genetics · 2024Article
- Lower Healthcare Access and Its Association With Individual Factors and Health-Related Quality of Life in Adults With Rare Diseases in Switzerland.International journal of public health · 2024Article
- Developing, optimizing, and evaluating patient infographics for diagnosing cardiac amyloidosis.PEC innovation · 2023Article
- What Are the Best Practices for Co-Creating Patient-Facing Educational Materials? A Scoping Review of the Literature.Healthcare (Basel, Switzerland) · 2023Article
- Article
- Embedding health literacy research and best practice within a socioeconomically and culturally diverse health service: A narrative case study and revised model of co-creation.Health expectations : an international journal of public participation in health care and health policy · 2023Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 3 institutions in 1 country.
Funding
Abstract
Patients often have difficulty understanding genetic test reports. Technical language and jargon can impede comprehension and limit patients using results to act on findings. One potential way to improve patient understanding of genetic test reports is to provide patient-facing materials. This study aimed to examine understandability and actionability of co-created patient-facing materials for genetic test results in a research context. We combined interprofessional perspectives and patient engagement to co-create patient-facing materials for patients undergoing research genetic testing for congenital hypogonadotropic hypogonadism (Kallmann syndrome). The iterative development process was guided by principles of health literacy and human-centered design (i.e., design thinking). Readability was assessed using eight validated algorithms. Patients and parents evaluated materials using a web-based survey. The gold standard Patient Education Materials Assessment Tool for print materials (PEMAT-P) was employed to measure understandability (content, style, use of numbers, organization, design, use of visual aids) and actionability. PEMAT-P scores >80% were considered high quality. Results were analyzed descriptively and correlations performed to identify relationships between education/health literacy and PEMAT-P ratings. A consensus score of eight algorithms indicated the materials were an 8
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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.