SynthesisQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2016
The psychosocial experience of individuals living with osteogenesis imperfecta: a mixed-methods systematic review.
Synthesis in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 40 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
40 citing papers in PubMed, 1 synthesis or guideline pooled it, 81 citations in OpenAlex.
- Quality of life of pediatric and adult individuals with osteogenesis imperfecta: a meta-analysis.Orphanet journal of rare diseases · 2023Pooled it
- Stakeholder views and attitudes towards prenatal and postnatal transplantation of fetal mesenchymal stem cells to treat Osteogenesis Imperfecta.European journal of human genetics : EJHG · 2019Trial
- Dose matters: haploinsufficiency in osteogenesis imperfecta.Nature reviews. Endocrinology · 2026Review
- Parent and professional experiences of a clinical trial of prenatal and postnatal stem cell therapy for severe osteogenesis imperfecta.European journal of human genetics : EJHG · 2026Article
- Inhibition of FGFR signaling with infigratinib improves linear bone growth in the femaleJBMR plus · 2026Article
- Treatment of Comorbid Schizophrenia in an Adolescent with Osteogenesis Imperfecta: A Case Report.Turk psikiyatri dergisi = Turkish journal of psychiatry · 2026Article
- Clinical diagnosis and challenges in management of Osteogenesis Imperfecta in a resource-limited setting - A case report and review of literature.International journal of surgery case reports · 2025Article
- The IMPACT Survey: The Humanistic Impact of Caring for an Individual with Osteogenesis Imperfecta.Advances in therapy · 2025Article
- Osteogenesis imperfecta and the family: A qualitative analysis of the experiences of family and caregivers.Families, systems & health : the journal of collaborative family healthcare · 2025Article
- Article
- Resilience and coping: a qualitative analysis of cognitive and behavioral factors in adults with osteogenesis Imperfecta.Disability and rehabilitation · 2025Article
- Psychosocial Experiences of Adults With Lower Limb Fracture in Ghana: A Qualitative Study.Journal of patient experience · 2025Article
- Optimising Health-Related Quality of Life in Children With Osteogenesis Imperfecta.Calcified tissue international · 2024Review
- The IMPACT Survey: the humanistic impact of osteogenesis imperfecta in adults.BMC public health · 2024Article
- Qualitative investigation of school experiences in children with osteogenesis imperfecta.Children's health care : journal of the Association for the Care of Children's Health · 2024Article
- Caregiver Burden, Parenting Stress and Coping Strategies: The Experience of Parents of Children and Adolescents with Osteogenesis Imperfecta.Healthcare (Basel, Switzerland) · 2024Article
- Home care needs assessment among caregivers of children and adolescents with osteogenesis imperfecta: a cross-sectional study.BMC primary care · 2024Article
- A qualitative exploration of patient perspectives on psychosocial burdens and positive factors in adults with osteogenesis imperfecta.American journal of medical genetics. Part A · 2023Article
- Impact of caregiver's eHealth literacy, financial well-being, and mental health on quality of life of pediatric patients with osteogenesis imperfecta.Health and quality of life outcomes · 2023Article
- The Design, Development, and Usability Testing of an eHealth Program for Youths With Osteogenesis Imperfecta: Protocol for a 2-Phase User-Centered Mixed Methods Study.JMIR research protocols · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeOsteogenesis imperfecta (OI) is a genetic disorder (prevalence: 1:10,000), leading to bone fragility, frequent fractures, and varying degrees of physical limitations. Despite a substantial amount of research on the genetics, pathophysiology, and treatments related to OI, there remains a paucity of knowledge concerning the lived psychosocial experience of the OI population. This mixed-methods systematic review aimed to review, appraise, and synthesize the literature on the psychosocial experience of children and adults with OI with the goal of identifying implications for research, practice, and policy-making.
methodsUsing a systematic methodology, quantitative, qualitative, and mixed-methods studies were accessed through database searching, screened, assessed for eligibility, and appraised. Data from the selected studies fulfilling the eligibility and quality criteria were extracted and synthesized using thematic analysis with an inductive approach.
resultsA total of four qualitative and 20 quantitative studies, with various study designs and methodologies ranging in quality, were included in the review (n = 800; comprising 610 children and 175 adults with OI types I, III, IV, and V, ten parents and five healthcare professionals). Six themes were identified: intellectual feats, isolation and feeling different, fear of fractures, coping with challenges, adapting by learning new skills, and social relationships.
conclusionThese findings highlighted key aspects of the experiences of children and adults with OI and will be essential for improving the quality and direction of research, tailoring clinical interventions addressing the psychosocial needs and quality of life of individuals with OI, and raising awareness among caregivers, healthcare professionals, administrators, and policy-makers associated with the OI population.
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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.