Dataset Information

The experience of living with adolescent idiopathic scoliosis: a qualitative evidence synthesis using meta-ethnography.

ABSTRACT:

Background

Adolescent idiopathic scoliosis (AIS) is a common spinal deformity with physical and psychosocial implications for adolescents. The aim of this qualitative evidence synthesis (QES) was to systematically search for, identify, and synthesise qualitative research in order to improve our understanding of what it is like to live with AIS and to facilitate empathetic and effective healthcare.

Methods

We systematically searched 4 databases (Medline, EMBASE, PsycINFO and CINAHL) and used the 7 phases of meta-ethnography to synthesise qualitative evidence including studies with children and adolescents, and additional viewpoints from parents about the experience of AIS.

Results

We distilled 7 themes. (1) Diagnosis turned time on its head revolves around the AIS diagnosis and the uncertainty of the future that accompanied it. (2) Usual activities no longer the same explores how activities and participation in everyday life are impacted by AIS. (3) Hiding my body describes the pervasive struggle with self-image and appearance. (4) I want to feel normal again explores adolescents' desire to return to 'normality' and challenges of feeling different. (5) Balancing isolation and support considers the relationships in the adolescents' lives alongside their feelings of isolation. (6) Trying to keep control of treatment decisions explores how adolescents and their parents strive to feel in control. (7) Fearing surgery yet feeling hopeful focused on the apprehension and fear around spinal surgery and the beacon of hope it represented.

Conclusions

Our QES contributes to the understanding of the adolescent experience of living with AIS. From our findings, clinicians can better understand the physical and psychosocial obstacles and the challenges faced throughout the journey of AIS to inform their clinical interactions with these patients.

SUBMITTER: Hannink E

PROVIDER: S-EPMC10362777 | biostudies-literature | 2023 Jul

REPOSITORIES: biostudies-literature

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Publications

The experience of living with adolescent idiopathic scoliosis: a qualitative evidence synthesis using meta-ethnography.

Hannink Erin E Toye Francine F Newman Meredith M Barker Karen L KL

BMC pediatrics 20230722 1

<h4>Background</h4>Adolescent idiopathic scoliosis (AIS) is a common spinal deformity with physical and psychosocial implications for adolescents. The aim of this qualitative evidence synthesis (QES) was to systematically search for, identify, and synthesise qualitative research in order to improve our understanding of what it is like to live with AIS and to facilitate empathetic and effective healthcare.<h4>Methods</h4>We systematically searched 4 databases (Medline, EMBASE, PsycINFO and CINAHL ...[more]

PMID: 37481537

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Project description:BackgroundA misbalance in forces is proposed for causing adolescent idiopathic scoliosis (AIS). AIS is therefore correlated to adjacent musculoskeletal pathologies. Its concomitance with idiopathic pectus deformities (PD) is underexposed. This systematic review analyzes the clinical significance and predictive factors of PD-associated AIS.MethodsA search was performed in PubMed, UpToDate, Embase, and Cochrane. A study was included if it: assessed the association between PD and scoliosis (category I), reported a prevalence of scoliosis in PD patients (category II), or addressed other topics about PD-associated AIS (category III). Studies in category I discussing predictive factors were appraised using the Quality in Prognosis Studies tool. Because of heterogeneity among the studies, predictive factors were analyzed according to a best evidence synthesis. A mean prevalence of scoliosis in PD patients was calculated using category I and II. Category III was narratively reviewed.ResultsForty-eight studies were included (I:19, II:21, III:8). Category I comprised 512 patients with PD-concomitant scoliosis. Thirteen studies reported predictive factors, of which 15 concerned the prevalence of scoliosis in PD patients and 12 Cobb Angle (CA) change after PD correction. Compared with AIS, PD seems to develop earlier in adolescence, and PD with concomitant AIS was more frequently reported in older patients. Evidence remained conflicting regarding the association between the severity of PD and that of scoliosis. As opposed to at a younger age, late PD correction is not associated with a postoperative increase of CA. Limited evidence showed that patients with a high CA undergoing PD correction do not experience an increase in CA, though, strong evidence indicated that it would not lead to a decrease in CA. The mean probable prevalence of AIS in PD patients was 13.1%.ConclusionCurrent literature confirms the association between PD and AIS in patients with an indication for PD correction.Level of evidence: III.

Project description:BackgroundEach year over five million people develop chronic non-malignant pain and can experience healthcare as an adversarial struggle. The aims of this study were: (1) to bring together qualitative evidence syntheses that explore patients' experience of living with chronic non-malignant pain and develop conceptual understanding of what it is like to live with chronic non-malignant pain for improved healthcare; (2) to undertake the first mega-ethnography of qualitative evidence syntheses using the methods of meta-ethnography.MethodsWe used the seven stages of meta-ethnography refined for large studies. The innovation of mega-ethnography is to use conceptual findings from qualitative evidence syntheses as primary data. We searched 7 bibliographic databases from inception until February 2016 to identify qualitative evidence syntheses that explored patients' experience of living with chronic non-malignant pain.ResultsWe identified 82 potential studies from 556 titles, screened 34 full text articles and included 11 qualitative evidence syntheses synthesising a total of 187 qualitative studies reporting more than 5000 international participants living with chronic pain. We abstracted concepts into 7 conceptual categories: (1) my life is impoverished and confined; (2) struggling against my body to be me; (3) the quest for the diagnostic 'holy grail'; (4) lost personal credibility; (5) trying to keep up appearances; (6) need to be treated with dignity; and (7) deciding to end the quest for the grail is not easy. Each conceptual category was supported by at least 7 of the 11 qualitative evidence syntheses.ConclusionsThis is the first mega-ethnography, or synthesis of qualitative evidence syntheses using the methods of meta-ethnography. Findings help us to understand that the decision to end the quest for a diagnosis can leave patients feeling vulnerable and this may contribute to the adversarial nature of the clinical encounter. This knowledge demonstrates that treating a patient with a sense that they are worthy of care and hearing their story is not an adjunct to, but integral to health care.

Project description:Adolescent Idiopathic Scoliosis (AIS) is the most common orthopedic condition requiring surgery, affecting 4% of adolescents. There is currently no proven method or prognostic test to identify symptomatic patients at risk of developing severe scoliosis who could benefit from growth-guided devices or minimally invasive non-fusion instrumentation surgeries. These innovative treatments must be performed at an early disease stage in younger patients to benefit from their growth potential. In this prospective cross-sectional study, we investigated the clinical utility of circulating microRNAs (miRNAs), an important class of small non-coding RNA, as biomarkers to predict the risk of developing severe scoliosis in AIS. Blood samples and clinical data were collected from 116 AIS patients who were followed until skeletal maturity and stratified according to their clinical outcome. Genome-wide expression profiling of miRNAs was performed with plasma obtained at the time of diagnosis of AIS (mean age of 13.3 ± 1.7 years with a mean Cobb angle of 24.4° ± 12.4°). This approach led to the identification of 15 circulating miRNAs that are upregulated in AIS patients who developed a severe scoliosis (Cobb angle ≥45°) at skeletal maturity compared to moderate and mild scoliosis groups (Cobb angle between 25°-44° and <25° respectively). After optimization and the application of Random Forest Models a panel of six miRNAs (miR-1-3p, miR-19a-3p, miR-19b-3p, miR-133b, miR-143-3p, and miR-148b-3p) out of 15 led us to develop an algorithm predicting the risk of developing a severe scoliosis with great accuracy (100%), sensitivity (100%) and specificity (100%). Having a scoliosis predictive bioassay and decision-making tools to predict curve progression in order to find the best treatment plan will undoubtedly transform the orthopedic care system in the field of pediatric scoliosis by integrating innovative precision medicine approaches. In addition, investigation of genes targeted by these miRNAs could fill our gaps in our understanding of AIS pathogenesis and reveal new actionable targets.

Dataset Information

The experience of living with adolescent idiopathic scoliosis: a qualitative evidence synthesis using meta-ethnography.

Background

Methods

Results

Conclusions

Publications

The experience of living with adolescent idiopathic scoliosis: a qualitative evidence synthesis using meta-ethnography.

Similar Datasets

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