ArticleBMC hematology2018
Adapting medical guidelines to be patient-centered using a patient-driven process for individuals with sickle cell disease and their caregivers.
Article in BMC hematology, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 1 of them a synthesis 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
17 citing papers in PubMed, 1 synthesis or guideline pooled it, 30 citations in OpenAlex.
- Pooled it
- A feasibility randomized controlled trial of an mHealth app vs booklets for patient-facing guidelines in adults with SCD.Blood advances · 2023Trial
- Community Health Worker-Integrated Model for Sickle Cell Disease Management: Protocol for a Feasibility Study.JMIR research protocols · 2026Article
- Beyond the hospital walls: community-based approaches to leukemia management in older adults.Annals of medicine and surgery (2012) · 2026Review
- Processes for Developing Plain Language Versions of Guidelines Recommendations: A Scoping Review.Journal of evaluation in clinical practice · 2025Article
- TRAUMA: making trauma clinical guidance more implementable.Trauma surgery & acute care open · 2025Article
- Methodology and reporting quality of patient and public versions of guidelines in China: A systematic review.Clinical and public health guidelines · 2024Article
- Identifying strategies that support equitable person-centred osteoarthritis care for diverse women: content analysis of guidelines.BMC musculoskeletal disorders · 2023Article
- Defining global strategies to improve outcomes in sickle cell disease: a Lancet Haematology Commission.The Lancet. Haematology · 2023Review
- Patient and public involvement in the development of clinical practice guidelines: a scoping review.BMJ open · 2022Article
- User testing of a Scottish Intercollegiate Guideline Network public guideline for the parents of children with autism.BMC health services research · 2022Article
- The reporting checklist for public versions of guidelines: RIGHT-PVG.Implementation science : IS · 2021Review
- Digital behavioural interventions for people with sickle cell disease.The Cochrane database of systematic reviews · 2021Article
- How to identify, incorporate and report patient preferences in clinical guidelines: A scoping review.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- How do guideline developers identify, incorporate and report patient preferences? An international cross-sectional survey.BMC health services research · 2020Article
- How do and could clinical guidelines support patient-centred care for women: Content analysis of guidelines.PloS one · 2019Article
- Development and Process Evaluation of Sickle Stroke Screen: A Patient Educational Initiative to Improve Transcranial Doppler Screening in Sickle Cell Anemia.Journal of pediatric hematology/oncology nursingArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
11 authors at 6 institutions in 1 country.
Funding
Abstract
backgroundEvidence-based guidelines for sickle cell disease (SCD) health maintenance and management have been developed for primary health care providers, but not for individuals with SCD. To improve the quality of care delivered to individuals with SCD and their caregivers, the main purposes of this study were to: (1) understand the desire for patient-centered guidelines among the SCD community; and (2) adapt guideline material to be patient-centered using community-engagement strategies involving health care providers, community -based organizations, and individuals with the disease.
methodsFrom May-December 2016, a volunteer sample of 107 individuals with SCD and their caregivers gave feedback at community forums (
resultsIn community forums (n = 64), almost all participants (91%) wanted direct access to the content of the guidelines. Participants wanted guidelines in more than one format including paper (73%) and mobile devices (79%). Guidelines were adapted to be patient-centered. After multiple iterations of feedback, 100% of participants said the guidelines were understandable, most (88%) said they were actionable, and everyone (100%) would use these adapted guidelines to discuss their medical care with their health care providers.
conclusionsIndividuals with SCD and their caregivers want access to guidelines through multiple channels, including technology. Guidelines written for health care providers can be adapted to be patient-centered using Community-engaged research involving providers and patients. These patient-centered guidelines provide a framework for patients to discuss their medical care with their health care providers.
Indexed as
Identifiers
What OpenQuestion holds
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.