The patient generated index and decision regret in adolescent idiopathic scoliosis

Lonner, Baron; Castillo, Andrea; Jain, Amit; Sponseller, Paul D.; Samdani, Amer F.; Kelly, Michael P.; Ames, Christopher P.; Eaker, Lily; Marrache, Majd; Shah, Suken A.

doi:10.1007/s43390-020-00155-9

Cited by 10 publications

(5 citation statements)

References 28 publications

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“…Clinical success can be defined by improvement of radiographic parameters, pain reduction, improved body image and durability of outcomes. Patient and family preferences and goals must be taken into account when recommending a procedure, acknowledging attributes and drawbacks as well as gaps in knowledge of a particular procedure and approach [ 3 , 4 ]. Some families may have an aversion to the idea of a spinal fusion procedure for their child, either due to perceived or actual negative impacts, its permanency, or a desire to maintain flexibility of the spine and leave options available for future innovations in the arena of pediatric scoliosis correction.…”

Section: Introductionmentioning

confidence: 99%

Vertebral Body Tethering in 49 Adolescent Patients after Peak Height Velocity for the Treatment of Idiopathic Scoliosis: 2–5 Year Follow-Up

Meyers

Eaker

Zhang

et al. 2022

JCM

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Vertebral Body Tethering (VBT) is a non-fusion surgical treatment for Adolescent Idiopathic Scoliosis (AIS) that elicits correction via growth modulation in skeletally immature patients. VBT after peak height velocity is controversial and is the subject of this study. A retrospective review of Risser 3–5 AIS patients treated with VBT, and min. 2-year FU was performed. Pre to post-op changes in clinical outcomes were compared using Student’s t-test or the Mann-Whitney test. A total of 49 patients met criteria, age 15.0 ± 1.9 years, FU 32.5 ± 9.1 months. For thoracic (T) major curvatures, T curvature improved from 51.1 ± 6.9° to 27.2° ± 8.1° (p < 0.01) and TL from 37.2° ± 10.7° to 19.2° ± 6.8° (p < 0.01). For thoracolumbar (TL) major curvatures, T improved from 37.2° ± 10.7° to 18.8° ± 9.4° (p < 0.01) and TL from 49.0° ± 6.4° to 20.1° ± 8.5° (p < 0.01). Major curve inclinometer measurements and SRS-22 domains, except activity, improved significantly (p ≤ 0.05). At the latest FU, one (2%) patient required fusion of the T curve and revision of the TL tether due to curve progression in the previously uninstrumented T curve and tether breakage (TB) in the TL. Twenty (41%) patients experienced TB. VBT in AIS patients with limited remaining skeletal growth resulted in satisfactory clinical outcomes at the latest FU.

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Section: Introductionmentioning

confidence: 99%

Vertebral Body Tethering in 49 Adolescent Patients after Peak Height Velocity for the Treatment of Idiopathic Scoliosis: 2–5 Year Follow-Up

Meyers

Eaker

Zhang

et al. 2022

JCM

Self Cite

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“…neurologic injury). More recently, Lonner et al (2020) surveyed 44 patients about the most important aspects of their lives that were affected by AIS in the presurgical period and found that ‘sports’, ‘general function’, and ‘general fitness’ were the most common concerns, and that improving their ‘self-esteem’ and ‘pain’ were the most common operative aspirations.…”

Section: Introductionmentioning

confidence: 99%

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

Motyer

Kiely

Fitzgerald

2021

Journal of Pediatric Psychology

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Objective Adolescent idiopathic scoliosis (AIS) is a sideways curvature of the spine that can progress severely during adolescent development and require surgical intervention. This qualitative study was conducted to explore the psychosocial experiences of adolescents with idiopathic scoliosis during the presurgical stage of treatment. Methods Fourteen adolescents with moderate-to-severe AIS aged 12–17 years participated in semistructured interviews and data were analyzed using inductive reflexive thematic analysis. Results Four key themes were generated from the analysis. “Proceeding with Caution” described adolescents’ adaptation to the physical impact of their AIS, while “Am I Different?” encompassed adolescents’ perceptions of their changing appearance and visibility of their condition. “An Emotional Journey” captured the rollercoaster of emotions from shock at diagnosis to the daunting realization of the severity of their condition, while knowing others with AIS could ease the emotional burden. Finally, adolescents’ concerns and expectations about their prospective surgery were captured by the theme “No Pain, No Gain”, whereby they were often keen to put surgery behind them. Conclusions Understanding and addressing adolescents’ psychosocial support needs as they manage the challenges associated with idiopathic scoliosis is a key component of promoting better outcomes among this patient group. Clinical implications and opportunities for support provision are discussed.

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“…Two studies each used a modified but non-validated Decision Regret Scale that had been adapted for next of kin by the authors (Table 3 ) [ 14 , 15 ], one closed question to assess decisional regret [ 31 , 32 ], one open question [ 33 , 34 ], or a qualitative structured interview [ 16 , 35 ]. Finally, one study each used a 4-point Likert scale similar to the Decision Regret Scale but with 7 questions instead of 5 [ 17 ], or an adapted quality-of-life questionnaire (Patient Generated Index) [ 36 ].…”

Section: Resultsmentioning

confidence: 99%

“…Decisional regret was assessed face-to-face (9 studies), as online survey (5), face-to-face or by phone (3), faceto-face or by mail (1), by mail only (1), or by email (1). Three studies did not report on a method of assessment (Table 2) [27,28,36].…”

Section: Methods Of Assessmentmentioning

confidence: 99%

Reviewing next of kin regrets in surgical decision-making: cross-sectional analysis of systematically searched literature

Maillard

Beckmann

Tramèr

et al. 2023

J Patient Rep Outcomes

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Background Decision-making concerning relatives undergoing surgery is challenging. It remains unclear to what extent implicated next of kin eventually regret their decisions and how this regret is assessed. Our aim was to systematically review the literature on decisional regret of next of kin and to describe the assessment tools used and the surgical populations studied. Methods We included interventional or observational, quantitative or qualitative studies reporting the measurement of decisional regret of next of kin concerning relatives undergoing surgery. We searched a variety of databases without restriction on publication year. We assessed the quality of reporting of quantitative studies using the NIH Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies and of qualitative studies using the Critical Appraisal Skills Program Checklist. Results Thirteen cross-sectional, five prospective cohorts and five qualitative studies matched our inclusion criteria. In 18 studies (78%), patients were children, in five (22%), young or middle-aged adults. No study included elderly or frail patients. Thirteen studies (57%) used the original Decision Regret Scale which was validated for patients, but not for next of kin. Only 3 of the 18 (17%) quantitative studies and only one of the 4 (25%) qualitative studies were rated as “good” in the quality assessment. Conclusion None of the retrieved studies used validated tools to assess the decisional regret of next of kin and none of them examined this issue in elderly or frail surgical patients.

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The patient generated index and decision regret in adolescent idiopathic scoliosis

Cited by 10 publications

References 28 publications

Vertebral Body Tethering in 49 Adolescent Patients after Peak Height Velocity for the Treatment of Idiopathic Scoliosis: 2–5 Year Follow-Up

Vertebral Body Tethering in 49 Adolescent Patients after Peak Height Velocity for the Treatment of Idiopathic Scoliosis: 2–5 Year Follow-Up

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

Reviewing next of kin regrets in surgical decision-making: cross-sectional analysis of systematically searched literature

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