Adolescents’ Experiences of Idiopathic Scoliosis in the Presurgical Period: A Qualitative Study

Motyer, Gillian; Kiely, Patrick; Fitzgerald, Amanda

doi:10.1093/jpepsy/jsab095

Cited by 16 publications

(48 citation statements)

References 40 publications

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“…Adolescence, as a phase of impressionable personal and social reorganization, sees modulation of self-image reflective of this period of development 8. How physical appearance is conceptualized during this stage is context dependent with the results enfolding into adult identity 8–10. The burden of a physically apparent diagnosis, such as AIS, during this life stage has been modeled akin to chronic illness: cognitive adaptations, lifestyle changes, and disruptions away from the “norm” for peers their age 8.…”

Section: Discussionmentioning

confidence: 99%

SRS-22r Self-Image After Surgery for Adolescent Idiopathic Scoliosis at 10 Year Follow-up

Stone

Upasani

Pahys

et al. 2023

Spine

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Study Design. Retrospective cohort Objective. To examine SRS-Self Image scores at up to 10 years after surgery for adolescent idiopathic scoliosis (AIS). Summary of Background Data. Self-image is complex with implications for surgical and patient-reported outcomes after AIS surgery. Surgically modifiable factors that impact self-image are inconsistently reported in the literature with few longer-term reports. We examined the rate and durability of self-image improvement. Materials and Methods. An AIS registry was queried for patients with up to 10 years of follow-up after AIS surgery. A mixed effects model estimated change in SRS-22 Self Image from baseline to 6 weeks, 1 year, 2 years, 5 years, and 10 years. All enrolled patients contributed data to the mixed effects models. A sub-analysis of patients with 1-year and 10-year follow-up evaluated worsening/static/improved SRS-22 Self Image scores examined stability of scores over that timeline. Baseline demographic data and 1-year deformity magnitude data were compared between groups using parametric and nonparametric tests as appropriate. Results. Data from 4608 patients contributed data to the longitudinal model; 162 had 1-year and 10-year data. Mean SRS-Self Image improvement at 10-year follow-up was 1.0 (95% CI: 0.9–1.1) point. No significant changes in Self-Image domain scores were estimated from 1-year to 10-year (all P>0.05) postoperative. Forty (25%) patients had SRS-Self Image worsening from 1 year to 10 years, 36 (22%) improved, and 86 (53%) were unchanged. Patients who worsened over 10 years had lower SRS-Self Image at baseline than those unchanged at enrollment (3.3 vs. 3.7, P=0.007). Neither radiographic parameters nor SRS-Mental Health were different at baseline for the enrolled patients. Conclusion. Ten years after surgery, 75% of patients reported similar or better SRS-Self Image scores than one year after surgery. Nearly 25% of patients reported worsening self-image at 10 years. Patients who worsened had lower baseline SRS-Self Image scores, without radiographic or mental health differences at baseline or follow-up.

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Section: Discussionmentioning

confidence: 99%

SRS-22r Self-Image After Surgery for Adolescent Idiopathic Scoliosis at 10 Year Follow-up

Stone

Upasani

Pahys

et al. 2023

Spine

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“…Wells’s “Personal perspective: moving out of pain,” 16 and West and Witt’s “A patient’s journey: bilateral developmental dysplasia of the hips” 17 both describe the demanding physical and mental aspects of recovery, the loss of a social life, loss of the ability to play with children, and the need for support from friends and family. West, a physician herself, closed by saying that as physicians, “we think we know how patients may feel and what they are worried about, [but] we really don’t.” Motyer et al 18 studied the psychological burden of living with adolescent idiopathic scoliosis. They found that patients struggled with emotions related to a fear of the operation and frustration about their inability to do the physical activities they enjoyed.…”

Section: Discussionmentioning

confidence: 99%

“…West, a physician herself, closed by saying that as physicians, "we think we know how patients may feel and what they are worried about, [but] we really don't." Motyer et al 18 studied the psychological burden of living with adolescent idiopathic scoliosis. They found that patients struggled with emotions related to a fear of the operation and frustration about their inability to do the physical activities they enjoyed.…”

Section: Discussionmentioning

confidence: 99%

A qualitative study of the impact of a periacetabular osteotomy on patients’ lives

Ferraro

Millis

2022

The Bone & Joint Journal

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Aims The aim of this study was to understand the experience of mature patients who undergo a periacetabular osteotomy (PAO), a major hip-preserving surgical procedure that treats symptomatic hip dysplasia by realigning the acetabulum. Our aim was to improve our understanding of how the operation affected the lives of patients and their families, with a long-term goal of improving their experience. Methods We used a phenomenological approach with in-depth, semi-structured interviews to investigate the experience of seven female patients, aged between 25 and 40 years, who underwent a PAO. A modified homogeneity sampling approach coupled with criterion sampling was used. Inclusion criteria involved having at least one child at home and being in a committed relationship with a spouse or partner. Results Analysis of interview transcripts revealed five major themes: feelings of frustration before having a treatment plan; fear of the operation; the importance of understanding the procedure in order to feel in control of their care; feelings of helplessness, dependence, and depression during recovery; and the need for support during recovery. Conclusion Our findings suggest that both the physical and psychosocial burdens of undergoing a PAO are great, with a major impact on the patient and their family. Many important issues lie outside the scope of what healthcare teams currently address. Cite this article: Bone Joint J 2022;104-B(7):781–785.

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“…In turn, past research has demonstrated that most brace users feel different from their friends, and almost half endorse difficulty socializing with peers 48. In the interest of self-perception and peer conformity, many adolescents try to hide their brace wear from friends 11,49–51. Because adolescents with high self-esteem and strong peer relationships have already met their need for relatedness, they may be more likely to reject brace wear due to its potential negative impact on their preexisting social connections.…”

Section: Discussionmentioning

confidence: 99%

Why Don’t Adolescents Wear Their Brace? A Prospective Study Investigating Psychosocial Characteristics That Predict Scoliosis Brace Wear

Gornitzky

England

Kiani

et al. 2022

Journal of Pediatric Orthopaedics

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Background: Although bracing for adolescent idiopathic scoliosis can prevent curve progression and reduce the risk for future surgery, children frequently do not wear their braces as prescribed. The purpose of this study is to investigate how a broad array of psychosocial characteristics predict future compliance with scoliosis brace wear. Methods: This was a single institution, prospective cohort study. All adolescents prescribed a first-time brace for adolescent idiopathic scoliosis were eligible. Patients and their parents completed a separate series of questionnaires that assessed baseline psychosocial characteristics across 6 domains: (1) brace-specific attitudes; (2) body image and self-esteem; (3) school performance and social relationships; (4) psychological health; (5) family functioning; and (6) demographics and scoliosis-specific details (242 total questions across 12 validated questionnaires). Objective brace compliance was collected using temperature-sensitive monitors. Defining compliance as percentage of brace prescription completed, comparative analyses were performed to identify baseline psychosocial characteristics that were associated with future wear. A composite measure (Bracing Fidelity Follow-Up Scale [BFFS]) of the 12 most predictive individual questions across all domains (both parent and adolescent) was constructed to help assess which adolescents were at highest risk of failure to wear their brace. Total BFFS score for each parentadolescent dyad who completed all the included surveys was then determined by awarding one point for each factor that positively influenced future brace wear (maximum 12 points), and a correlation was calculated between total score and percent adherence to prescribed brace wear.Results: A total of 41 patients were included. On average, patients with high self-esteem, above average peer relationships and poor brace-specific attitudes had lower brace compliance, although patients with increased loneliness and parental religiousness had higher compliance. Body image, socioeconomic status, family dynamics, and school performance had no significant relationship with brace use. Total score on the Bracing Fidelity Follow-Up Scale (BFFS) was significantly associated with improved brace wear (r = 0.687,P < 0.001). Those with a score of 6 or above (n = 15/33 [45%], median compliance 96%) were more reliable users (15/15 with compliance > 75%), and those with a score of 5 or less (n = 18/33 [55%], median compliance 50%) had less consistent brace wear (9/18 with compliance <50%). Conclusion: This prospective study identifies numerous baseline psychosocial factors that are associated with future compliance with scoliosis brace wear. Although in need of further validation before widespread clinical application, the novel BFF scale offers a potential opportunity to partially discriminate between compliant and noncompliant scoliosis brace users such that supportive resources (eg, supportive counseling, peer-support groups, additional provider-based education, etc.) can be targe...

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Adolescents’ Experiences of Idiopathic Scoliosis in the Presurgical Period: A Qualitative Study

Cited by 16 publications

References 40 publications

SRS-22r Self-Image After Surgery for Adolescent Idiopathic Scoliosis at 10 Year Follow-up

SRS-22r Self-Image After Surgery for Adolescent Idiopathic Scoliosis at 10 Year Follow-up

A qualitative study of the impact of a periacetabular osteotomy on patients’ lives

Why Don’t Adolescents Wear Their Brace? A Prospective Study Investigating Psychosocial Characteristics That Predict Scoliosis Brace Wear

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