Comparison of adolescent and parental perception of health-related quality of life of adolescents with idiopathic scoliosis
Abstract
Purpose: Evaluation of the health-related quality of life (HRQoL) of individuals with idiopathic scoliosis (IS) is important because of the physical and psychosocial problems caused by IS. In general, children interact closely with their parents and are thus influenced by their parents’ opinions. It is thus useful to examine adolescent and parental perceptions of the adolescent’s HRQoL for the rehabilitation of individuals with IS.
Methods: This study compared the adolescents’ and their parents’ perceptions of the adolescent’s HRQoL including 65 individuals with IS (10–18 years). It was used the pediatric quality of life inventory (PedsQL) to assess the adolescents’ HRQoL and to examine the domains of physical health, emotional functioning, social functioning, school functioning, and psychosocial health.
Results: The results showed that the scores of the adolescents were higher than their parents’ in social functioning. Scores of social functioning and HRQoL were higher in girls than in their parents.
Conclusion: This discrepancy between the adolescents and their parents may have a negative effect on their rehabilitation, healthy social integration, and adaptation of individuals with IS. Shedding light on the reasons for this discrepancy would be beneficial for raising the awareness of parents with children with IS about this issue.
Keywords
Scoliosis Health-related quality of life Parent-child relations Social participation Social desirability
References
- Varni JW, Burwinkle TM, Lane MM. Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes. 2005;3:34.
- Duramaz A, Yılmaz S, Ziroğlu N, et al. T. The effect of deformity correction on psychiatric condition of the adolescent with adolescent idiopathic scoliosis. Eur Spine J. 2018;27:2233-2240.
- Auerbach JD, Lonner BS, Crerand CE, et al. Body image in patients with adolescent idiopathic scoliosis: validation of the body image disturbance questionnaire-scoliosis version. J Bone Joint Surg Am. 2014;96:e61.
- De Figueiredo CRS, Dias FV. Families: influences in children's development and behaviour, from parents and teachers' point of view. Psychology Research. 2012; 2(12): 693-705.
- Rudan V. Adolescent development and external influences. Coll Antropol. 2000;24:585-596.
- Han J, Xu Q, Yang Y, et al. Evaluation of quality of life and risk factors affecting quality of life in adolescent idiopathic scoliosis. Intractable Rare Dis Res. 2015;4:12-16.
- Brewer P, Berryman F, Baker D, et al. Analysis of the Scoliosis Research Society-22 Questionnaire scores: ıs there a difference between a child and parent and does physician review change that? Spine Deform. 2014;2:34-39.
- Misterska E, Glowacki M, Adamczyk K, et al. Patients’ and parents’ perceptions of appearance in scoliosis treated with a brace: a cross-sectional analysis. J Child Fam Stud. 2014;23:1163-1171.
- Kontodimopoulos N, Damianou K, Stamatopoulou E, et al. Children’s and parents’ perspectives of health-related quality of life in newly diagnosed adolescent idiopathic scoliosis. J Orthop. 2018;15:319-323.
- Sanders JO, Polly Jr DW, Cats-Baril W, et al. AIS Section of the Spinal Deformity Study Group. Analysis of patient and parent assessment of deformity in idiopathic scoliosis using the Walter Reed Visual Assessment Scale. Spine. 2003;28: 2158-2163.
- Rigo M, D'Agata E, Jelacic M. Trunk appearance perception scale (TAPS) discrepancy between adolescents with idiopathic scoliosis and their parents influences HRQL. Scoliosis. 2013;8(Suppl 1):O55.
- Landorf KB, Keenan AM. An evaluation of two foot-specific, health-related quality-of-life measuring instruments. Foot Ankle Int. 2002; 23:538-546.
- Garratt AM, Brealey S, Robling M, et al. Developmentof the Knee Quality of Life (KQoL-26) 26-item questionnaire: data quality, reliability, validity and responsiveness. Health Qual Life Outcomes. 2008;6:48.
- Beaudart C, Biver E, Bruyère O, et al. Quality of life assessment in musculo-skeletal health. Aging Clin Exp Res. 2018;30:413-418.
- Wiebe S, Guyatt G, Weaver B, et al. Comparative responsiveness of generic and specific quality-of-life instruments. J Clin Epidemiol. 2003;56:52-60.
- Alanay A, Cil A, Berk H, et al. Reliability and validity of adapted Turkish Version of Scoliosis Research Society-22 (SRS-22) Questionnaire. Spine. 2005;30:2464-2468.
- Gür G, Yakut Y, Grivas T. The Turkish version of the Brace Questionnaire in brace-treated adolescents with idiopathic scoliosis. Prosthet Orthot Int. 2018;42:129-135.
- Yilmaz HG, Kuru T, Yavuzer G. Turkish adaptation and reliability of Bad Sobernheim Stress Questionnaire in adolescents with idiopathic scoliosis using spinal brace. Turk J Phys Med Rehabil. 2012;58:225-229.
- Tones M, Moss N, Polly Jr DW. A review of quality of life and psychosocial issues in scoliosis. Spine. 2006;31:3027-3038.
- Lai SM, Asher M, Burton D. Estimating SRS-22 quality of life measures with SF-36: application in idiopathic scoliosis. Spine. 2006;31:473-478.
- Wiklund I. The Nottingham Health Profile--a measure of health-related quality of life. Scand J Prim Health Care Suppl. 1990;1:15-18.
- Lee H, Choi J, Hwang JH, et al. Psychometric evaluation of the Scoliosis Research Society-22 Revised questionnaire among adolescents with idiopathic scoliosis. J Pediatr Orthop B. 2017;26:59-63.
- Varni JW, Seid M, Kurtin PS. PedsQL™ 4.0: Reliability and validity of the Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales in healthy and patient populations. Medical Care. 2001;39:800-812.
- Cobb J. Outline for the study of scoliosis. Instructional Course Lectures. 1948; 5: 261–275.
- Bunnell WP. Outcome of spinal screening. Spine. 1993;18:1572-1580.
- Schwimmer JB, Burwinkle TM, Varni JW. Health-related quality of life of severely obese children and adolescents. JAMA. 2003;289:1813-1819.
- Memik NÇ, Ağaoğlu B, Coşkun A, et al. The validity and reliability of pediatric quality of life inventory in 8-12 year old Turkish children. Turk J Child Adolesc Ment Health. 2008;15:87-98.
- Memik NC, Agaoglu B, Coskun A, et al. The validity and reliability of the Turkish Pediatric Quality of Life Inventory for children 13-18 years old. Turk Psikiyatri Dergisi. 2007;18:353-362.
- Pinquart M, Teubert D. Academic, physical, and social functioning of children and adolescents with chronic physical illness: A meta-analysis. J Pediatr Psychol. 2012;37:376-389.
- Sawyer MG, Whitham JN, Roberton DM, et al. The relationship between health-related quality of life, pain and coping strategies in juvenile idiopathic arthritis. Rheumatology. 2004;43:325-330.
- Bridwell KH, Shufflebarger HL, Lenke LG, et al. Parents’ and patients’ preferences and concerns in idiopathic adolescent scoliosis: a cross-sectional preoperative analysis. Spine. 2000;25:2392-2399.
- Gaspar T, De Matos MG, Batista-Foguet J, et al. Parent–child perceptions of quality of life: Implications for health intervention. Journal of Family Studies. 2010;16:143-154.
- Silva E, Silva D, Duarte J, et al. Quality of life perceived by children adolescents and their parents. The European Proceedings of Social & Behavioural Sciences. 2018; EpSBS, 48(ICH&HPSY 2018):141-148.
- Forgeron PA, King S, Stinson JN, et al. Social functioning and peer relationships in children and adolescents with chronic pain: A systematic review. Pain Res Manag. 2010;15:27-41.
- Arabiat DH, Jabery MA, Wardam L. Screening for anxiety symptoms and social desirability in children and adolescents living with chronic illnesses in Jordan. J Child Health Care. 2013;17:62-71.
- Eiser C, Morse R. Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res. 2001;10:347-357.
- Abbott BD, Barber BL, Dziurawiec S. What difference can a year make? Changes in functional and aesthetic body satisfaction among male and female adolescents over a year. Aust Psychol. 2012;47:224-231.
- Dinomais M, Gambart G, Bruneau A, et al. Social functioning and self-esteem in young people with disabilities participating in adapted competitive sport. Neuropediatrics. 2010;41:49-54.
- Bisegger C, Cloetta B, Von Bisegger U, et al. Health-related quality of life: gender differences in childhood and adolescence. Sozial-und Präventivmedizin. 2005;50:281-291.
İdiyopatik skolyozlu adölesanların sağlıkla ilgili yaşam kalitesine ilişkin adölesan ve ebeveyn algılarının karşılaştırılması
Abstract
Amaç: İdiyopatik skolyozlu (İS) bireylerin sağlıkla ilişkili yaşam kalitesinin (SİYK) değerlendirilmesi, İS'nin neden olduğu fiziksel ve psikososyal sorunlar nedeniyle önemlidir. Genel olarak, çocuklar ebeveynleriyle yakın etkileşim içindedir ve ebeveynlerinin görüşlerinden etkilenirler. Bu nedenle, İS'li bireylerin rehabilitasyonu için adölesanın SİYK'sine ilişkin adölesan ve ebeveyn algılarını incelemek yararlı olacaktır.
Yöntem: Bu çalışma 65 İS'li bireyi (10-18 yaş) dahil ederek, adölesanların ve ebeveynlerinin adölesanın SİYK'sine ilişkin algılarını karşılaştırdı. Adölesanların SİYK'sini değerlendirmek ve fiziksel sağlık, emosyonel işlevsellik, sosyal işlevsellik, okul işlevselliği ve psikososyal sağlık alanlarını incelemek için Çocuklar için Yaşam Kalitesi Envanteri (ÇİYKÖ) kullanıldı.
Bulgular: Sonuçlar, adölesanların sosyal işlevsellik puanlarının ebeveynlerin verdiği puandan daha yüksek olduğunu göstermiştir. Sosyal işlevsellik ve SİYK puanları kızlarda ebeveynlerinden daha yüksekti.
Sonuç: Adölesanlar ve ebeveynleri arasındaki bu uyuşmazlık, İS'li bireylerin rehabilitasyonlarını, sağlıklı sosyal entegrasyonlarını ve uyumlarını olumsuz yönde etkileyebilir. Bu farklılığın nedenlerinin aydınlatılması, İS'li çocuğa sahip ebeveynlerin bu konuda bilinçlendirilmesi açısından faydalı olacaktır.
Keywords
Skolyoz Skolyoz Sağlıkla ilgili yaşam kalitesi Ebeveyn-çocuk ilişkileri Sosyal katılım Sosyal istenirlik
References
- Varni JW, Burwinkle TM, Lane MM. Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes. 2005;3:34.
- Duramaz A, Yılmaz S, Ziroğlu N, et al. T. The effect of deformity correction on psychiatric condition of the adolescent with adolescent idiopathic scoliosis. Eur Spine J. 2018;27:2233-2240.
- Auerbach JD, Lonner BS, Crerand CE, et al. Body image in patients with adolescent idiopathic scoliosis: validation of the body image disturbance questionnaire-scoliosis version. J Bone Joint Surg Am. 2014;96:e61.
- De Figueiredo CRS, Dias FV. Families: influences in children's development and behaviour, from parents and teachers' point of view. Psychology Research. 2012; 2(12): 693-705.
- Rudan V. Adolescent development and external influences. Coll Antropol. 2000;24:585-596.
- Han J, Xu Q, Yang Y, et al. Evaluation of quality of life and risk factors affecting quality of life in adolescent idiopathic scoliosis. Intractable Rare Dis Res. 2015;4:12-16.
- Brewer P, Berryman F, Baker D, et al. Analysis of the Scoliosis Research Society-22 Questionnaire scores: ıs there a difference between a child and parent and does physician review change that? Spine Deform. 2014;2:34-39.
- Misterska E, Glowacki M, Adamczyk K, et al. Patients’ and parents’ perceptions of appearance in scoliosis treated with a brace: a cross-sectional analysis. J Child Fam Stud. 2014;23:1163-1171.
- Kontodimopoulos N, Damianou K, Stamatopoulou E, et al. Children’s and parents’ perspectives of health-related quality of life in newly diagnosed adolescent idiopathic scoliosis. J Orthop. 2018;15:319-323.
- Sanders JO, Polly Jr DW, Cats-Baril W, et al. AIS Section of the Spinal Deformity Study Group. Analysis of patient and parent assessment of deformity in idiopathic scoliosis using the Walter Reed Visual Assessment Scale. Spine. 2003;28: 2158-2163.
- Rigo M, D'Agata E, Jelacic M. Trunk appearance perception scale (TAPS) discrepancy between adolescents with idiopathic scoliosis and their parents influences HRQL. Scoliosis. 2013;8(Suppl 1):O55.
- Landorf KB, Keenan AM. An evaluation of two foot-specific, health-related quality-of-life measuring instruments. Foot Ankle Int. 2002; 23:538-546.
- Garratt AM, Brealey S, Robling M, et al. Developmentof the Knee Quality of Life (KQoL-26) 26-item questionnaire: data quality, reliability, validity and responsiveness. Health Qual Life Outcomes. 2008;6:48.
- Beaudart C, Biver E, Bruyère O, et al. Quality of life assessment in musculo-skeletal health. Aging Clin Exp Res. 2018;30:413-418.
- Wiebe S, Guyatt G, Weaver B, et al. Comparative responsiveness of generic and specific quality-of-life instruments. J Clin Epidemiol. 2003;56:52-60.
- Alanay A, Cil A, Berk H, et al. Reliability and validity of adapted Turkish Version of Scoliosis Research Society-22 (SRS-22) Questionnaire. Spine. 2005;30:2464-2468.
- Gür G, Yakut Y, Grivas T. The Turkish version of the Brace Questionnaire in brace-treated adolescents with idiopathic scoliosis. Prosthet Orthot Int. 2018;42:129-135.
- Yilmaz HG, Kuru T, Yavuzer G. Turkish adaptation and reliability of Bad Sobernheim Stress Questionnaire in adolescents with idiopathic scoliosis using spinal brace. Turk J Phys Med Rehabil. 2012;58:225-229.
- Tones M, Moss N, Polly Jr DW. A review of quality of life and psychosocial issues in scoliosis. Spine. 2006;31:3027-3038.
- Lai SM, Asher M, Burton D. Estimating SRS-22 quality of life measures with SF-36: application in idiopathic scoliosis. Spine. 2006;31:473-478.
- Wiklund I. The Nottingham Health Profile--a measure of health-related quality of life. Scand J Prim Health Care Suppl. 1990;1:15-18.
- Lee H, Choi J, Hwang JH, et al. Psychometric evaluation of the Scoliosis Research Society-22 Revised questionnaire among adolescents with idiopathic scoliosis. J Pediatr Orthop B. 2017;26:59-63.
- Varni JW, Seid M, Kurtin PS. PedsQL™ 4.0: Reliability and validity of the Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales in healthy and patient populations. Medical Care. 2001;39:800-812.
- Cobb J. Outline for the study of scoliosis. Instructional Course Lectures. 1948; 5: 261–275.
- Bunnell WP. Outcome of spinal screening. Spine. 1993;18:1572-1580.
- Schwimmer JB, Burwinkle TM, Varni JW. Health-related quality of life of severely obese children and adolescents. JAMA. 2003;289:1813-1819.
- Memik NÇ, Ağaoğlu B, Coşkun A, et al. The validity and reliability of pediatric quality of life inventory in 8-12 year old Turkish children. Turk J Child Adolesc Ment Health. 2008;15:87-98.
- Memik NC, Agaoglu B, Coskun A, et al. The validity and reliability of the Turkish Pediatric Quality of Life Inventory for children 13-18 years old. Turk Psikiyatri Dergisi. 2007;18:353-362.
- Pinquart M, Teubert D. Academic, physical, and social functioning of children and adolescents with chronic physical illness: A meta-analysis. J Pediatr Psychol. 2012;37:376-389.
- Sawyer MG, Whitham JN, Roberton DM, et al. The relationship between health-related quality of life, pain and coping strategies in juvenile idiopathic arthritis. Rheumatology. 2004;43:325-330.
- Bridwell KH, Shufflebarger HL, Lenke LG, et al. Parents’ and patients’ preferences and concerns in idiopathic adolescent scoliosis: a cross-sectional preoperative analysis. Spine. 2000;25:2392-2399.
- Gaspar T, De Matos MG, Batista-Foguet J, et al. Parent–child perceptions of quality of life: Implications for health intervention. Journal of Family Studies. 2010;16:143-154.
- Silva E, Silva D, Duarte J, et al. Quality of life perceived by children adolescents and their parents. The European Proceedings of Social & Behavioural Sciences. 2018; EpSBS, 48(ICH&HPSY 2018):141-148.
- Forgeron PA, King S, Stinson JN, et al. Social functioning and peer relationships in children and adolescents with chronic pain: A systematic review. Pain Res Manag. 2010;15:27-41.
- Arabiat DH, Jabery MA, Wardam L. Screening for anxiety symptoms and social desirability in children and adolescents living with chronic illnesses in Jordan. J Child Health Care. 2013;17:62-71.
- Eiser C, Morse R. Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res. 2001;10:347-357.
- Abbott BD, Barber BL, Dziurawiec S. What difference can a year make? Changes in functional and aesthetic body satisfaction among male and female adolescents over a year. Aust Psychol. 2012;47:224-231.
- Dinomais M, Gambart G, Bruneau A, et al. Social functioning and self-esteem in young people with disabilities participating in adapted competitive sport. Neuropediatrics. 2010;41:49-54.
- Bisegger C, Cloetta B, Von Bisegger U, et al. Health-related quality of life: gender differences in childhood and adolescence. Sozial-und Präventivmedizin. 2005;50:281-291.
Details
| Primary Language | English |
|---|---|
| Subjects | Health Care Administration |
| Journal Section | Articles |
| Authors | |
| Publication Date | April 18, 2024 |
| Submission Date | April 20, 2023 |
| Published in Issue | Year 2024 Volume: 11 Issue: 1 |
