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Ailevi Akdeniz Ateşi Olan 2-18 Yaş Arası Çocuklarda Sağlıkla İlişkili Yaşam Kalitesinin Değerlendirilmesi

Yıl 2022, Cilt: 16 Sayı: 6, 469 - 475, 30.11.2022
https://doi.org/10.12956/tchd.1013742

Öz

Amaç: Bu çalışmada ailevi Akdeniz ateşi (AAA) olan 2-18 yaş arası çocuk hastaların ve ebeveynlerinin sağlıkla ilgili yaşam kalitesini değerlendirmek ve aynı yaş grubundaki sağlıklı çocuklar ile karşılaştırmak amaçlandı.

Gereç ve Yöntemler: Ailevi Akdeniz ateşi olan 51 çocuk ile yaş ve cins olarak eşleştirilmiş 51 sağlıklı gönüllü çalışmaya dahil edildi. Sekiz-18 yaş arası çocuklar PedsQL4.0 çocuk formunu doldururken, tüm yaş gruplarında ebeveynler PedsQL4.0 ebeveyn formunu doldurdu.


Bulgular:
Sekiz-18 yaş grubu çocuk formlarının değerlendirilmesinde, istatistiksel anlamlı olmamakla birlikte, fiziksel sağlık, sosyal sağlık, okul işlevselliği, psikososyal total skor ve ölçek toplam skoru açısından AAA olan çocukların puanlarının daha düşük olduğu saptandı.
Ebeveyn PedsQL4.0 değerlendirildiğinde ise tüm yaş gruplarında AAA olan çocukların ebeveynlerinde fiziksel, duygusal, sosyal, psikososyal, okul işlevselliği skorları ve ölçek toplam skorlarının sağlıklı çocukların aileleri ile karşılaştırıldığında daha düşük olduğu ancak istatistiksel anlamlı düzeye ulaşmadığı saptandı. Sosyal sağlık toplam skoru hariç tüm ölçeklerde AAA olan çocuklar ve ebeveynlerinin PedsQL4.0 değerlendirmeleri arasında anlamlı korelasyon olduğu saptandı. Demografik değişkenler ve klinik bulgular ile çocuk PedsQL4.0 arasında anlamlı ilişki saptanmadı.

Sonuç: Ailevi Akdeniz ateşi olan olgularda ölçek skorları istatistiksel anlamlı olmasa da sağlıklı kontrollere göre daha düşüktür. Çalışmamızda göreceli olarak az sayıda hasta olduğu göz önünde bulundurulduğunda bu alanda daha kapsamlı ve fazla sayıda hasta içeren çalışmalara ihtiyaç olduğu sonucuna varılmıştır.

Kaynakça

  • Ben-Chetrit E, Levy M. Familial Mediterranean fever. Lancet 1998;351(9103):659-64.
  • Onen F.Familial Mediterranean fever. Rheumatol Int 2006; 26:489-96.
  • Livneh A, Langevitz P, Zemer D, Zaks N, Kees S, Lidar T, et al. Criteria for the diagnosis of familial Mediterranean fever. Arthritis Rheum 1997; 40:1879-85.
  • French FMF Consortium. A candidate gene for familial Mediterranean fever. Nature Genet 1997;17:25–31.
  • International FMF Consortium. Ancient missense mutations in a new member of the RoRet gene family are likely to cause familial Mediterranean fever. Cell 1997; 90:797–807.
  • Özkan E, Okur Ö, Ekmekçi A, Özcan R, Tag T. A new approach to the treatment of periodic fever. Med Bull Istanbul 1972; 5: 44-49.
  • Goldfinger SI. Colchicine for Familial Mediterranean fever. N Eng J Med 1972; 287:1302.
  • Koné-Paut I, Hentgen V, Touitou I. Current data on familial Mediterranean fever. Joint Bone Spine 2011; 78:111-114.
  • WHOQOL GROUP: The World Health Organization Quality of Life assessment (WHO- QOL): Position paper from the World Health Organization . Soc Sci Med 1995; 41: 1403- 9.
  • Eiser C, Morse R. Quality of life measures in chronic disease of childhood. Health Technology Assessment 2001;5:1-156.
  • Burckhardt CS, Clark SR, Bennett RM. Fibromyalgia and quality of life: A comparative analysis.J Rheumatol 1993;20: 475-9.
  • Sahin S1, Yalcin I, Senel S, Ataseven H, Uslu A, Yildirim O, et al. Assesment life quality of familial Mediterranean fever patients by short form-36 and its relationship with disease parameters. Eur Rev Med Pharmacol Sci 2013;17:958-63.
  • Buskila D, Zaks N, Neumann L, Livneh A, Greenberg S, Pras M, et al. Quality of life of patients with familial Mediterranean fever. Clin Exp Rheumatol 1997 ;15:355-60.
  • Press J, Neumann L, Abu-Shakra M, Bolotin A, Buskila D. Living with a child with familial Mediterranean fever: does it affect the quality of life of the parents? Clin Exp Rheumatol 2000;18:103-6.
  • Makay B, Unsal E, Arslan N, Varni JW. Health-related quality of life of school-age children with familial Mediterranean fever. Clin Exp Rheumatol 2009; 27(2 Suppl 53):S96-101.
  • Pras E, Livneh A, Balow JE Jr, Pras E, Kastner DL, Pras M, et al. Clinical differences between North African and Iraqi Jews with familial Mediterranean fever. Am J Med Genet 1998; 13:216-9.
  • Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 1999; 37:126-39
  • Varni JW, Seid M, Smith Knight T, Burwinkle T, Brown J, Szer IS. The PedsQL in pediatric rheumatology: reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory Generic Core Scales and Rheumatology Module. Arthritis Rheum 2002; 46:714-25.
  • Uneri OS, Agaoglu B, Coskun A, Memik NC. Validity and reliability of Pediatric Quality of Life Inventory for 2- to 4-year-old and 5- to 7-year-old Turkish children. Qual Life Res 2008;17:307-15.
  • Cakin-Memik N, Ağaoğlu B, Coşkun A, Uneri OS, Karakaya I. The validity and reliability of the Turkish Pediatric Quality of Life Inventory for children 13-18 years old. Turk Psikiyatri Derg 2007;18:353-63.
  • Faul F, Erdfelder Ei, Lang AG, Buchner A. G*Power3: A flexible ststistical power anlysis program for the social, behavioral, and biomedical sciences. Behav Res Methods 2007;39:175-91.
  • Hayran M, Hayran M. Basic Statistics for Medical Research 1th eds Ankara:2011; Omega Araştırma Yayınları.
  • Giese A, Kurucay M, Kilic L, Örnek A, Şendur SN, Lainka E,et al. Quality of life in adult patients with Familial Mediterranean fever living in Germany or Turkey compared to healthy subjects: a study evaluating the effect of disease severity and country of residence. Rheumatol Int 2013;33:1713-9.
  • Yalçinkaya F, Cakar N, Misirlioğlu M, Tümer N, Akar N, Tekin M, et al. Genotype-phenotype correlation in a large group of Turkish patients with familial mediterranean fever: evidence for mutation-independent amyloidosis. Rheumatology 2000; 39:67-72.

Health Related Quality of Life of Children Aged 2-18 Years With Familial Mediterranean Fever

Yıl 2022, Cilt: 16 Sayı: 6, 469 - 475, 30.11.2022
https://doi.org/10.12956/tchd.1013742

Öz

Objective: We aimed to evaluate both child-self reported and parents proxy reported health related quality of life of children with familial Mediterranean fever (FMF) aged between 2-18 years old and to compare the scores with their healthy peers.

Material and Methods: Fifty -one patients with FMF and fifty one gender and age matched controls were enrolled in the study. Children aged 8-18 years completed the PedsQL4.0 child form questionnaires. Parents of all cases completed the PedsQL4.0 parent form.


Results:
Lower scores in the FMF group, with no statistical significance, was found between the FMF cases and healthy volunteers aged 8-18 years for the physical health, social health, school functioning, psychosocial total and scale total score of PEDsQL4.0 child self-report. The parent proxy report PedsQL4.0 scores of all patients with FMF were lower than the healthy group for physical, emotional, social, psycho-social, school functioning scores and scale total score but the difference was not statistically significant. A significant correlation was present between PedsQL4.0 child self-report and parent PedsQL4.0 report in all subscales except for social health total score. There was not a significant correlation between the demographic variables and clinical features of the patients and the child subscales of PedsQL4.0.

Conclusion: The scores of FMF cases from the scales were lower than those of the healthy volunteers from the questionnaires but this difference was not statistically significant. Considering the relatively small sample size of the study it is obvious that more comprehensive prospective studies are required on this subject.

Kaynakça

  • Ben-Chetrit E, Levy M. Familial Mediterranean fever. Lancet 1998;351(9103):659-64.
  • Onen F.Familial Mediterranean fever. Rheumatol Int 2006; 26:489-96.
  • Livneh A, Langevitz P, Zemer D, Zaks N, Kees S, Lidar T, et al. Criteria for the diagnosis of familial Mediterranean fever. Arthritis Rheum 1997; 40:1879-85.
  • French FMF Consortium. A candidate gene for familial Mediterranean fever. Nature Genet 1997;17:25–31.
  • International FMF Consortium. Ancient missense mutations in a new member of the RoRet gene family are likely to cause familial Mediterranean fever. Cell 1997; 90:797–807.
  • Özkan E, Okur Ö, Ekmekçi A, Özcan R, Tag T. A new approach to the treatment of periodic fever. Med Bull Istanbul 1972; 5: 44-49.
  • Goldfinger SI. Colchicine for Familial Mediterranean fever. N Eng J Med 1972; 287:1302.
  • Koné-Paut I, Hentgen V, Touitou I. Current data on familial Mediterranean fever. Joint Bone Spine 2011; 78:111-114.
  • WHOQOL GROUP: The World Health Organization Quality of Life assessment (WHO- QOL): Position paper from the World Health Organization . Soc Sci Med 1995; 41: 1403- 9.
  • Eiser C, Morse R. Quality of life measures in chronic disease of childhood. Health Technology Assessment 2001;5:1-156.
  • Burckhardt CS, Clark SR, Bennett RM. Fibromyalgia and quality of life: A comparative analysis.J Rheumatol 1993;20: 475-9.
  • Sahin S1, Yalcin I, Senel S, Ataseven H, Uslu A, Yildirim O, et al. Assesment life quality of familial Mediterranean fever patients by short form-36 and its relationship with disease parameters. Eur Rev Med Pharmacol Sci 2013;17:958-63.
  • Buskila D, Zaks N, Neumann L, Livneh A, Greenberg S, Pras M, et al. Quality of life of patients with familial Mediterranean fever. Clin Exp Rheumatol 1997 ;15:355-60.
  • Press J, Neumann L, Abu-Shakra M, Bolotin A, Buskila D. Living with a child with familial Mediterranean fever: does it affect the quality of life of the parents? Clin Exp Rheumatol 2000;18:103-6.
  • Makay B, Unsal E, Arslan N, Varni JW. Health-related quality of life of school-age children with familial Mediterranean fever. Clin Exp Rheumatol 2009; 27(2 Suppl 53):S96-101.
  • Pras E, Livneh A, Balow JE Jr, Pras E, Kastner DL, Pras M, et al. Clinical differences between North African and Iraqi Jews with familial Mediterranean fever. Am J Med Genet 1998; 13:216-9.
  • Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 1999; 37:126-39
  • Varni JW, Seid M, Smith Knight T, Burwinkle T, Brown J, Szer IS. The PedsQL in pediatric rheumatology: reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory Generic Core Scales and Rheumatology Module. Arthritis Rheum 2002; 46:714-25.
  • Uneri OS, Agaoglu B, Coskun A, Memik NC. Validity and reliability of Pediatric Quality of Life Inventory for 2- to 4-year-old and 5- to 7-year-old Turkish children. Qual Life Res 2008;17:307-15.
  • Cakin-Memik N, Ağaoğlu B, Coşkun A, Uneri OS, Karakaya I. The validity and reliability of the Turkish Pediatric Quality of Life Inventory for children 13-18 years old. Turk Psikiyatri Derg 2007;18:353-63.
  • Faul F, Erdfelder Ei, Lang AG, Buchner A. G*Power3: A flexible ststistical power anlysis program for the social, behavioral, and biomedical sciences. Behav Res Methods 2007;39:175-91.
  • Hayran M, Hayran M. Basic Statistics for Medical Research 1th eds Ankara:2011; Omega Araştırma Yayınları.
  • Giese A, Kurucay M, Kilic L, Örnek A, Şendur SN, Lainka E,et al. Quality of life in adult patients with Familial Mediterranean fever living in Germany or Turkey compared to healthy subjects: a study evaluating the effect of disease severity and country of residence. Rheumatol Int 2013;33:1713-9.
  • Yalçinkaya F, Cakar N, Misirlioğlu M, Tümer N, Akar N, Tekin M, et al. Genotype-phenotype correlation in a large group of Turkish patients with familial mediterranean fever: evidence for mutation-independent amyloidosis. Rheumatology 2000; 39:67-72.
Toplam 24 adet kaynakça vardır.

Ayrıntılar

Birincil Dil İngilizce
Konular İç Hastalıkları
Bölüm ORIGINAL ARTICLES
Yazarlar

Sevgi Yaşar Durmuş 0000-0003-4226-7312

Sare Gülfem Özlü 0000-0002-9609-1511

Esra Çöp 0000-0001-8451-0099

Mehmet Bülbül 0000-0001-9007-9653

Yayımlanma Tarihi 30 Kasım 2022
Gönderilme Tarihi 26 Ekim 2021
Yayımlandığı Sayı Yıl 2022 Cilt: 16 Sayı: 6

Kaynak Göster

Vancouver Yaşar Durmuş S, Özlü SG, Çöp E, Bülbül M. Health Related Quality of Life of Children Aged 2-18 Years With Familial Mediterranean Fever. Türkiye Çocuk Hast Derg. 2022;16(6):469-75.

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