ArticlePediatric blood & cancer2021
Primary caregiver decision-making in hematopoietic cell transplantation and gene therapy for sickle cell disease.
Article in Pediatric blood & cancer, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 1 of them a synthesis that pooled it.
What it found
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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
24 citing papers in PubMed, 1 synthesis or guideline pooled it, 34 citations in OpenAlex.
- Balancing benefits and burdens: a systematic review on ethical and social dimensions of gene and cell therapies for hereditary blood diseases.BMC medical ethics · 2025Pooled it
- Haploidentical Bone Marrow Transplantation for Sickle Cell Disease.NEJM evidence · 2025Trial
- Article
- Review
- Informed shared decision-making or rigid eligibility and exclusion criteria for gene therapy for sickle cell disease?Blood advances · 2026Review
- Article
- Social Media and the Adolescent Transplant Recipient.Pediatric transplantation · 2025Review
- Assessing Psychosocial Risk and Resilience to Support Readiness for Gene Therapy in Sickle Cell Disease: A Consensus Statement.JAMA network open · 2024Article
- Incidence and risk factors of pain crisis after hematopoietic cell transplantation for sickle cell disease.Blood advances · 2024Article
- Clinician's perspectives on gene therapy for Alzheimer's disease: A qualitative study.PloS one · 2024Article
- Parental perspective on the risk of infertility and fertility preservation options for children and adolescents with sickle cell disease considering hematopoietic stem cell transplantation.Pediatric blood & cancer · 2023Article
- Enrollment Lessons from a Biological Assignment Study of Marrow Transplantation versus Standard Care for Adolescents and Young Adults with Sickle Cell Disease: Considerations for Future Gene and Cellular Therapy Trials.Transplantation and cellular therapy · 2023Article
- Multimodal phenotyping and correlates of pain following hematopoietic cell transplant in children with sickle cell disease.Pediatric blood & cancer · 2023Observational
- The perception of pediatric sickle cell anemia patient's caregivers toward hematopoietic stem cell transplantation (single-center experience, Saudi Arabia).Frontiers in pediatrics · 2023Article
- Decision-making about gene therapy in transfusion dependent thalassemia.BMC pediatrics · 2022Article
- Debating the Future of Sickle Cell Disease Curative Therapy: Haploidentical Hematopoietic Stem Cell Transplantation vs. Gene Therapy.Journal of clinical medicine · 2022Article
- Article
- Investigating the Potential Use of Andrographolide as a Coadjuvant in Sickle Cell Anemia Therapy.ACS omega · 2022Article
- Evidence-Based Minireview: In young children with severe sickle cell disease, do the benefits of HLA-identical sibling donor HCT outweigh the risks?Hematology. American Society of Hematology. Education Program · 2021Review
- Hematopoietic cell transplantation for sickle cell disease: updates and future directions.Hematology. American Society of Hematology. Education Program · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundImproved outcomes and the availability of clinical trials of hematopoietic cell transplantation (HCT) from alternate donors and genetically modified autologous hematopoietic progenitor cells have expanded the applicability of HCT for sickle cell disease (SCD). To understand the perspective of primary caregivers exploring HCT in the current milieu, we asked the research question "What motivates primary caregivers to decide to consider HCT and to seek, and to attend, an HCT consultation?" PROCEDURES: We conducted qualitative interviews with primary caregivers within one week after a consultation for HCT for SCD. Data were analyzed using open and axial coding stages of grounded theory methodology.
resultsWe interviewed 29 primary caregivers (26 females, age 29 to 64 [median 42] years). Primary caregivers report of SCD complications in their child included at least one in the last year by 23 (82%), few or none by 8 (28%), and pain on ≥3 days a week by 13 (46%) primary caregivers. Qualitative analysis revealed that primary caregivers, (i) learn about curative options through social networks, social media, and the news media; (ii) seek consultation because of their child's diminished quality of life, recent complications, an imminent major medical decision, or anxiety about future severe complications; and (iii) see gene therapy as a new, less invasive, and more acceptable treatment.
conclusionPrimary caregivers of children with SCD learn about HCT through social networks, social and news media, and explore HCT as a means to prevent SCD complications and help their child live a normal life.
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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.