Tag: patient-reported outcome measures

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Quality-of-Life Outcomes in Adults and Children With Chiari 1 Malformation and in Those Managed Without Surgery

Neurosurgery 98:1113–1128, 2026

This multicenter prospective study evaluates health-related quality of life (HRQoL) in adults and children with Chiari 1 malformation (CM1) who were managed without surgery, comparing baseline and 12-month patient-reported outcomes. Using SF-36 for adults and PedsQL for children, the UK Chiari 1 Study found baseline HRQoL was lower than normative data but showed overall stability at 12 months for nonsurgical patients.

The study reports symptom prevalence, imaging characteristics, and management decisions across 192 participants, identifying limb and back pain, poor balance, syringomyelia, and psychiatric comorbidity as factors associated with worse HRQoL. Results support cautious nonoperative management for many patients and call for larger, longer-term comparative studies between surgical and nonsurgical care.

Study focus: Prospective, multicenter UK observational cohort measuring health-related quality of life in adults (SF-36) and children (PedsQL) with Chiari 1 malformation (CM1) managed without surgery, from first neurosurgical clinic review to 12 months later.

Baseline HRQoL: Quality-of-life scores at baseline were significantly lower than normative control data across every domain in both adults and children.

Cohort size/follow-up: 192 patients had baseline data; 113 nonsurgical patients had 12-month follow-up data (146 female; 148 adults in baseline cohort).

12-month change (overall): No decreases in quality-of-life subscores over 12 months in adults or children managed without surgery.

Adult improvements: In adults managed without surgery, social functioning and bodily pain SF-36 subscores improved at 12 months (social functioning: t = −4.0, P < .001; bodily pain: t = −2.9, P = .03).

Symptoms at presentation: Headache was most prevalent (79.2% overall), including occipital headache (65.1%) and Valsalva-induced headache (54.2); headache and Valsalva headache were more common in adults than children.

Imaging findings: Median maximum cerebellar tonsillar descent was 10 mm (IQR 7–13); syringomyelia was present in 25.2% of those with spine MRI available for review.

Clinical implications/next steps: HRQoL stability over 12 months supports reassurance/counseling for selected mildly symptomatic or borderline cases, while emphasizing need for robust surgical vs nonsurgical comparisons and longer-term study.

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Minimal Clinically Important Difference and Relative Change in Patient-Reported Outcomes After Surgery for Cervical Spondylotic Myelopathy: A Nationwide Study of 1,700 Patients

Neurosurgery 98:358–364, 2026

This nationwide registry study of 1,756 patients evaluates minimal clinically important difference (MCID) versus minimal clinically important relative change (MCIRC) for patient-reported outcomes after surgery for degenerative cervical myelopathy. Using anchor-based ROC analyses, the authors derive MCID and MCIRC thresholds for NRS neck/arm pain, EQ-5D index, EQ VAS, and NDI, and compare predictive accuracy for patient satisfaction at one year.

Key findings show MCIRC outperforms absolute MCID for NRS neck and arm pain and NDI, while MCID is superior for EQ-5D index and EQ VAS; selected thresholds are reported (e.g., NRS neck MCID −3 and MCIRC −47%). The study recommends incorporating MCIRC in future spine outcome guidelines to improve individualized assessment.

Minimal Clinically Important Difference (MCID): MCID represents the smallest absolute change in patient-reported outcome measures (PROMs) that signifies meaningful improvement for the patient after cervical spondylotic myelopathy surgery.

Minimal Clinically Important Relative Change (MCIRC): MCIRC is a proportional measure that reflects the minimum relative change in PROMs from baseline, making it more sensitive to changes in patients with extreme baseline values.

Calculation Methods: MCID and MCIRC values were determined using anchor-based approaches (with patient satisfaction as the anchor), ROC curve analysis with the Youden index, minimal detectable change (MDC), and mean change methods.

Key Thresholds Identified: MCID values were −3 for NRS neck pain, −2 for NRS arm pain, 0.09 for EQ5D index, 7 for EQ VAS, and −12 for NDI; MCIRC values were −47% for NRS neck pain, −40% for NRS arm pain, 386% for EQ5D index, 52% for EQ VAS, and −32% for NDI.

Predictive Accuracy: Relative change (MCIRC) provided greater predictive accuracy for identifying patient satisfaction in NRS neck/arm pain and NDI, while absolute difference (MCID) was superior for EQ5D index and EQ VAS.

Clinical Implication: MCIRC is recommended for PROMs influenced by baseline severity (like pain and disability scores), as it better accounts for individual variability and may enhance individualized patient assessment.

Study Population: The study analyzed 1,756 patients from the Swedish Spine Registry who underwent surgery for degenerative cervical myelopathy, with 59% reporting satisfaction at one year postoperatively.

Practical Recommendation: Incorporating MCIRC thresholds into future spine surgery outcome guidelines could improve evaluation of individualized patient recovery.

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Long-term outcomes of peripheral nerve field stimulation in patients with refractory trigeminal neuralgia: a cohort study

J Neurosurg 143:982–986, 2025

Peripheral nerve field stimulation (PNFS) for refractory trigeminal neuralgia showed high long-term treatment failure, especially in females, with frequent complications and revisions. Only half of male patients reported lasting benefit. PNFS should be considered cautiously for this condition.

Peripheral nerve field stimulation (PNFS) was studied for refractory trigeminal neuralgia with a long-term follow-up.

Fifteen patients (6 male, 9 female; median age 70) were included, with a median follow-up of 93 months.

PNFS had a high rate of long-term treatment failure, especially in females.

The median time to treatment failure was 2 years (5.1 years in males, 1.5 years in females; p = 0.003).

Only 3 patients (all male) reported ongoing benefit.

Complications and revision surgeries were common (4 patients, 7 revisions).

No significant differences in outcomes were found between classic and secondary trigeminal neuralgia or by patient age.

PNFS should be considered cautiously due to limited long-term efficacy and frequent complications.

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Long-Term Durability of Stand-Alone Lateral Lumbar Interbody Fusion

Neurosurgery 93:60–65, 2023

BACKGROUND: The long-term durability of stand-alone lateral lumbar interbody fusion (LLIF) remains unknown.

OBJECTIVE: To evaluate whether early patient-reported outcome measures after stand-alone LLIF are sustained on long-term follow-up.

METHODS: One hundred and twenty-six patients who underwent stand-alone LLIF between 2009 and 2017 were included in this study. Patient-reported outcome measures included the Oswestry Disability Index (ODI), EuroQOL-5D (EQ-5D), and visual analog score (VAS) scores. Durable outcomes were defined as scores showing a significant improvement between preoperative and 6-week scores without demonstrating any significant decline at future time points. A repeated measures analysis was conducted using generalized estimating equations (model) to assess the outcome across different postoperative time points, including 6 weeks, 1 year, 2 years, and 5 years.

RESULTS: ODI scores showed durable improvement at 5-year follow-up, with scores improving from 46.9 to 38.5 (P = .001). Improvements in EQ-5D showed similar durability up to 5 years, improving from 0.48 to 0.65 (P = .03). VAS scores also demonstrated significant improvements postoperatively that were durable at 2-year follow-up, improving from 7.0 to 4.6 (P < .0001).

CONCLUSION: Patients undergoing stand-alone LLIF were found to have significant improvements in ODI and EQ-5D at 6week follow-up that remained durable up to 5 years postoperatively. VAS scores were found to be significantly improved at 6 weeks and up to 2 years postoperatively but failed to reach significance at 5 years. These findings demonstrate that patients undergoing stand-alone LLIF show significant improvement in overall disability after surgery that remains durable at long-term follow-up.

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Pretreatment patient‐reported cognitive function in patients with diffuse glioma

Acta Neurochirurgica (2022) 164:703–711

Cognitive function is frequently assessed with objective neuropsychological tests, but patient-reported cognitive function is less explored. We aimed to investigate the preoperative prevalence of patient-reported cognitive impairment in patients with diffuse glioma compared to a matched reference group and explore associated factors.

Methods We included 237 patients with diffuse glioma and 474 age- and gender-matched controls from the general population. Patient-reported cognitive function was measured using the cognitive function subscale in the European Organisation for Research and Treatment of Cancer QLQ-C30 questionnaire. The transformed scale score (0–100) was dichotomized, with a score of ≤ 75 indicating clinically important patient-reported cognitive impairment. Factors associated with preoperative patient-reported cognitive impairment were explored in a multivariable regression analysis.

Results Cognitive impairment was reported by 49.8% of the diffuse glioma patients and by 23.4% in the age- and gendermatched reference group (p < 0.001). Patients with diffuse glioma had 3.2 times higher odds (95% CI 2.29, 4.58, p < 0.001) for patient-reported cognitive impairment compared to the matched reference group. In the multivariable analysis, large tumor volume, left tumor lateralization, and low Karnofsky Performance Status score were found to be independent predictors for preoperative patient-reported cognitive impairment.

Conclusions Our findings demonstrate that patient-reported cognitive impairment is a common symptom in patients with diffuse glioma pretreatment, especially in patients with large tumor volumes, left tumor lateralization, and low functional levels. Patient-reported cognitive function may provide important information about patients’ subjective cognitive health and disease status and may serve as a complement to or as a screening variable for subsequent objective testing.

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Workers’ Compensation Association With Clinical Outcomes After Anterior Cervical Diskectomy and Fusion

Neurosurgery 90:322–328, 2022

Research has suggested that workers’ compensation (WC) status can result in poor outcomes after anterior cervical diskectomy and fusion (ACDF).

OBJECTIVE: To determine the influence WC status has on postoperative clinical outcomes after ACDF.

METHODS: A surgical database was reviewed for patients undergoing primary or revision single-level ACDF. Patients were grouped into WC vs Non-WC, and differences in baseline characteristics were assessed. Postoperative improvement was assessed for differences in mean scores between WC subgroups for visual analog scale (VAS) arm, VAS neck, 12-item Short Form Physical Composite Score, Patient-Reported Outcomes Measurement Information System physical function (PF), and Neck Disability Index (NDI) at preoperative and postoperative time points. Minimum clinically important difference (MCID) achievement was compared between groups.

RESULTS: The patient cohort included 44 with WC and 95 without. The cohort was 40% female with an average age of 48 years and mean body mass index of 30. Mean VAS arm, VAS neck, NDI, 12-item Short-Form Physical Composite Score, and Patient-Reported Outcomes Measurement Information System PF scores differed between groups; however, the difference was not sustained at the 1-yr time point. MCID achievement among WC subgroups was different for VAS arm (6 wk through 6 mo, P = .005), VAS neck (3 and 6 mo, P < .01), and NDI (3 and 6 mo, P < .05). No statistically significant difference was noted between cohorts for overall rates of MCID achievement for all patient-reported outcome measures collected.

CONCLUSION: WC patients reported similar preoperative and 1-yr postoperative neck and arm pain compared with non-WC patients after ACDF. One-yr MCID achievement rates were similar between cohorts for disability and PF scores.

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Predictive outcome factors in the young patient treated with lumbar disc herniation surgery

Surgical technique and effectiveness of microendoscopic discectomy for large uncontained lumbar disc herniations

J Neurosurg Spine 25:448–455, 2016

The aim of this study was to evaluate predictive factors for outcome after lumbar disc herniation surgery in young patients.

Methods In the national Swedish spine register, the authors identified 180 patients age 20 years or younger, in whom preoperative and 1-year postoperative data were available. The cohort was treated with primary open surgery due to lumbar disc herniation between 2000 and 2010. Before and 1 year after surgery, the patients graded their back and leg pain on a visual analog scale, quality of life by the 36-Item Short-Form Health Survey and EuroQol–5 Dimensions, and disability by the Oswestry Disability Index. Subjective satisfaction rate was registered on a Likert scale (satisfied, undecided, or dissatisfied). The authors evaluated if age, sex, preoperative level of leg and back pain, duration of leg pain, pain distribution, quality of life, mental status, and/or disability were associated with the outcome. The primary end point variable was the grade of patient satisfaction.

Results Lumbar disc herniation surgery in young patients normalizes quality of life according to the 36-Item Short- Form Health Survey, and only 4.5% of the patients were unsatisfied with the surgical outcome. Predictive factors for inferior postoperative patient-reported outcome measures (PROM) scores were severe preoperative leg or back pain, low preoperative mental health, and pronounced preoperative disability, but only low preoperative mental health was associated with inferiority in the subjective grade of satisfaction. No associations were found between preoperative duration of leg pain, distribution of pain, or health-related quality of life and the postoperative PROM scores or the subjective grade of satisfaction.

Conclusions Lumbar disc herniation surgery in young patients generally yields a satisfactory outcome. Severe preoperative pain, low mental health, and severe disability increase the risk of reaching low postoperative PROM scores, but are only of relevance clinically (low subjective satisfaction) for patients with low preoperative mental health.

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