15
views
0
recommends
+1 Recommend
0 collections
    0
    shares
      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

      Does Kyphectomy Improve the Quality of Life of Patients With Myelomeningocele?

      research-article

      Read this article at

      Bookmark
          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          Background

          Lumbar kyphosis is a complex spinal deformity occurring in approximately 8% to 20% of patients with myelomeningocele. The resulting gibbosity may cause pressure ulcers, difficulty lying down in the supine position and sitting on the ischia without support, decreasing quality of life (QOL). Surgery is generally performed to correct kyphosis and maintain vertebral alignment, but high complication rates have been reported. Despite satisfactory radiological results, the impact of surgery and its complications on health-related QOL (HRQOL) has not yet been established.

          Questions/purposes

          Among children with myelomeningocele undergoing corrective surgery for lumbar kyphosis: (1) What is the risk of complications and reoperation after this procedure? (2) Does this procedure improve HRQOL scores in these patients?

          Methods

          Between 2012 and 2013, five surgeons at three centers treated 32 patients for myelomeningocele-related kyphosis with kyphectomy and posterior instrumentation. During that period, all surgeons used the same indications for the procedure, which were progressive postural decompensation and chronic ulceration at the apex of the deformity. Data were prospectively collected, and all patients who underwent surgery were considered in this retrospective study. The legal guardians of one patient declined to sign the informed consent form, resulting in 31 patients included. A total of 9.7% (3 of 31) were lost to follow-up before the 2-year period, and the remaining 90.3% (28 of 31) were seen at a mean of 3 years (± 9 months) after surgery. The average age was 10 years, 7 months (± 21 months) at the time of surgery. The patients had a mean kyphosis angle of 130° ± 36° before surgery. This technique involved posterior fixation using S-shaped rods inserted through the foramina of S1 and pedicle screws inserted in the thoracic spine. The patients’ caregivers answered both the generic and specific (neuromuscular module) Pediatric Quality of Life Inventory questionnaires preoperatively and 2 years postoperatively. The minimum clinically important difference (MCID) considered for the instruments used was 5.

          Results

          Reoperation was performed in 68% of patients (19 of 28), mostly to treat deep infection. In all, 18% of patients (five of 28) underwent implant removal to control infection. Eleven percent (three of 28) had a loss of reduction and pseudarthrosis. The HRQOL increased from 71 ± 11 preoperatively to 76 ± 10 postoperatively (p < 0.001), resulting in a 5-point increase (95% CI 3 to 7) in the generic questionnaire score and from 71 ± 13 to 79 ± 11 (p < 0.001), resulting in an 8-point increase (95% CI 5 to 10) in the neuromuscular Paediatric Quality of Life Inventory questionnaire score, mainly in the physical health domain on both questionnaires.

          Conclusions

          Kyphectomy was associated with a high risk of complications and reoperations and did not seem to deliver a substantial clinical benefit for patients who underwent the procedure. Most of our HRQOL score improvements were below the minimum clinically important difference for the Pediatric Quality of Life Inventory questionnaires. Although it seems that surgeons lack a better surgical alternative when facing the challenging health impairments these patients suffer, efforts should be made to improve the technique and reduce surgical complications. Additionally, patients and caregivers should be advised of the high reoperation rate and notified that the procedure may not result in a better QOL and should thus be avoided when possible. Future studies should verify whether decreasing the complication rate could imply improvement in the HRQOL of these patients after surgery.

          Level of Evidence

          Level IV, therapeutic study.

          Related collections

          Most cited references29

          • Record: found
          • Abstract: found
          • Article: not found

          PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations.

          The PedsQL (Pediatric Quality of Life Inventory) (Children's Hospital and Health Center, San Diego, California) is a modular instrument for measuring health-related quality of life (HRQOL) in children and adolescents ages 2 to 18. The PedsQL 4.0 Generic Core Scales are multidimensional child self-report and parent proxy-report scales developed as the generic core measure to be integrated with the PedsQL Disease-Specific Modules. The PedsQL 4.0 Generic Core Scales consist of 23 items applicable for healthy school and community populations, as well as pediatric populations with acute and chronic health conditions. The 4 PedsQL 4.0 Generic Core Scales (Physical, Emotional, Social, School) were administered to 963 children and 1,629 parents (1,677 subjects accrued overall) recruited from pediatric health care settings. Item-level and scale-level measurement properties were computed. Internal consistency reliability for the Total Scale Score (alpha = 0.88 child, 0.90 parent report), Physical Health Summary Score (alpha = 0.80 child, 0.88 parent), and Psychosocial Health Summary Score (alpha = 0.83 child, 0.86 parent) were acceptable for group comparisons. Validity was demonstrated using the known-groups method, correlations with indicators of morbidity and illness burden, and factor analysis. The PedsQL distinguished between healthy children and pediatric patients with acute or chronic health conditions, was related to indicators of morbidity and illness burden, and displayed a factor-derived solution largely consistent with the a priori conceptually-derived scales. The results demonstrate the reliability and validity of the PedsQL 4.0 Generic Core Scales. The PedsQL 4.0 Generic Core Scales may be applicable in clinical trials, research, clinical practice, school health settings, and community populations.
            Bookmark
            • Record: found
            • Abstract: found
            • Article: not found

            The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity.

            The application of health-related quality of life (HRQOL) as a pediatric population health measure may facilitate risk assessment and resource allocation, the tracking of community health, the identification of health disparities, and the determination of health outcomes from interventions and policy decisions. To determine the feasibility, reliability, and validity of the 23-item PedsQL 4.0 (Pediatric Quality of Life Inventory) Generic Core Scales as a measure of pediatric population health for children and adolescents. Mail survey in February and March 2001 to 20 031 families with children ages 2-16 years throughout the State of California encompassing all new enrollees in the State's Children's Health Insurance Program (SCHIP) for those months and targeted language groups. The PedsQL 4.0 Generic Core Scales (Physical, Emotional, Social, School Functioning) were completed by 10 241 families through a statewide mail survey to evaluate the HRQOL of new enrollees in SCHIP. The PedsQL 4.0 evidenced minimal missing responses, achieved excellent reliability for the Total Scale Score (alpha =.89 child;.92 parent report), and distinguished between healthy children and children with chronic health conditions. The PedsQL 4.0 was also related to indicators of health care access, days missed from school, days sick in bed or too ill to play, and days needing care. The results demonstrate the feasibility, reliability, and validity of the PedsQL 4.0 as a pediatric population health outcome. Measuring pediatric HRQOL may be a way to evaluate the health outcomes of SCHIP.
              Bookmark
              • Record: found
              • Abstract: found
              • Article: not found

              The PedsQL in pediatric patients with Duchenne muscular dystrophy: feasibility, reliability, and validity of the Pediatric Quality of Life Inventory Neuromuscular Module and Generic Core Scales.

              To evaluate the reliability and validity of the PedsQL 3.0 Neuromuscular Module (NMM) in assessing health-related quality of life in the Duchenne muscular dystrophy (DMD) population for use as a secondary outcome measure in phase III clinical trials. DMD is the most common genetic form of muscular dystrophy in childhood. Clinical trials are underway to evaluate modalities of treatment. The NMM was developed based on interviews of patients with DMD and spinal muscular atrophy. To determine the PedsQL reliability and validity, we administered the NMM to patients with DMD and their caregivers. Boys 8 to 18 years old with DMD were recruited from a neuromuscular disease clinic. At baseline, the child and caregiver completed the NMM and the PedsQL 4.0 Generic Core Scales (GC). The NMM was repeated 2 to 6 weeks later. Reliability was assessed using Cronbach's coefficient alpha (internal consistency) and intraclass correlation (ICC) (test-retest consistency). Construct validity was assessed by comparing baseline child and caregiver NMM total scores with the GC Total Score, forced vital capacity, cardiac ejection fraction, and ambulatory status. Forty-four children and their caregivers completed the study. Internal consistency reliability of the total scale score of the NMM was demonstrated (Child alpha = 0.85; Caregiver alpha = 0.87). Test-retest reliability of the NMM was also demonstrated (Child ICC = 0.75, P = 0.001; Caregiver ICC = 0.85, P < 0.001). Validity of the total scale score of the NMM when compared with the GC Total Scale Score was supported (Child r (41) = 0.63, P < 0.001; Caregiver r (42) = 0.64, P < 0.001). Validity of the NMM compared with forced vital capacity was also supported (Child r (38) = 0.35, P = 0.032; Caregiver r (39) = 0.41, P = 0.01). The NMM parent-proxy-report and child self-report "About My Child's Neuromuscular Disease" scale was significantly related to wheelchair use (P < 0.008 and 0.016, respectively); the GC "Child Self-Report "Physical Health" scale was also significantly related to wheelchair use (P < 0.001). We were unable to conduct any analysis with ejection fraction because of the small number of children across all categories. The PedsQL NMM is a reliable measure of disease-specific health-related quality of life in the DMD population and may be used as an outcome measure in clinical trials.
                Bookmark

                Author and article information

                Journal
                Clin Orthop Relat Res
                Clin. Orthop. Relat. Res
                CORR
                CORR
                ABJS
                Clinical Orthopaedics and Related Research
                Wolters Kluwer (Philadelphia, PA )
                0009-921X
                1528-1132
                January 2020
                19 September 2019
                : 478
                : 1
                : 104-111
                Affiliations
                P. A. Petersen, R. M. Marcon, O. B. Letaif, R. G. Oliveira, T. E. Passos de Barros Filho, A. F. Cristante, Spine Group, Faculdade de Medicina, Universidade de São Paulo, São Paulo, Brazil
                R. M. Marcon, O. B. Letaif, M. A. M. Santos, A. F. Cristante, Associação de Assistência à Criança Deficiente, Hospital Abreu Sodré, São Paulo, Brazil
                Author notes
                P. A. Petersen, Rua Dr. Ovídio Pires de Campos, 333, CEP 04018-001, São Paulo, Brazil, E-mail: pedro.petersen@ 123456usp.br
                Article
                CORR-D-19-00392 00021
                10.1097/CORR.0000000000000976
                7000045
                31567706
                a1c459a4-c001-4b03-8773-242d1239372f
                Copyright © 2019 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the Association of Bone and Joint Surgeons

                This is an open access article distributed under the Creative Commons Attribution License 4.0 (CCBY), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 23 March 2019
                : 06 September 2019
                Categories
                0150
                Clinical Research
                Custom metadata
                TRUE

                Orthopedics
                Orthopedics

                Comments

                Comment on this article