Evaluation of quality of life and sleep in family members of children with atopic dermatitis
Year 2022,
, 475 - 483, 01.07.2022
Savaş Sari
,
Damla Geçkalan Soysal
,
Ahmet Turkeli
Abstract
Objective: Atopic dermatitis is an inflammatory, intense skin disease that usually appears in early childhood and infant, with a chronic course of healing and exacerbation. It impairs the quality of life of families as well as patients. In this study, it was aimed to evaluate the quality of life and sleep in mothers of children with atopic dermatitis aged 6 months to 6 years, and quality of life in healthy siblings aged 2-4 years.
Matheryal and method: A total of 50 siblings were included in the study, including mothers of patients with atopic dermatitis, siblings between 2-4 years. The control group was randomly selected from healthy mothers and siblings of healthy children as the same number of similiar age groups. The diagnosis of atopic dermatitis was made according to Hanifin - Rajka criteria. Disease severity was evaluated with the SCORAD Index. The PedsQLTM Version 4.0 Short Form 15, the Pediatric Quality of Life Scale, the family impact scale parent report (PedsQLTM Family impact Module) and the Pittsburgh Sleep Quality Index (PUKI) were filled by mothers.
Results: The family impact scale total score of the mothers of children with atopic dermatitis was found to be significantly lower than the control group. In the atopic dermatitis group, the quality of life score was significantly lower compared to the control groups.
Conclusion: In our study, we conclude that families with atopic dermatitis have decreased quality of life and sleep quality is impaired, but we believe that there is a need for wider participation and multicenter supportive studies to obtain healthier data.
References
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- 5. Siegfried EC, Hebert AA. Diagnosis of Atopic Dermatitis: Mimics, Overlaps, and Complications. J Clin Med. 2015 May 6;4(5):884-917. https://doi.org/ 10.3390/jcm4050884.
- 6. Al-Adawiyah R, Putera AM, Astari L, Ariyanto FC. Determinant factors of recurrence atopic dermatitis symptoms in children: A cross-sectional study. Ann Med Surg (Lond). 2021 Sep 20;70:102847. https://doi.org/ 10.1016/j.amsu.2021.102847.
- 7. Kristal L, Klein PA. Atopic dermatitis in infants and children. An update. Pediatr Clin North Am. 2000 Aug;47(4):877-95. https://doi.org/10.1016/s0031-3955(05)70246-7.
- 8. Basra MK, Gada V, Ungaro S, Finlay AY, Salek SM. Infants' Dermatitis Quality of Life Index: a decade of experience of validation and clinical application. Br J Dermatol. 2013 Oct;169(4):760-8. https://doi.org/10.1111/bjd.12563.
- 9. Bilaç C, Bilaç Ö, & Öztürkcan S. (2014). Çocuklarda dermatolojik hastalıklarda yaşam kalitesi. Archives of the Turkish Dermatology & Venerology/ Türkderm 2014; 48: 60-6. https:// doi.org/10.4274/turkderm.88886.
- 10. Marciniak J, Reich A, Szepietowski JC. Quality of Life of Parents of Children with Atopic Dermatitis. Acta Derm Venereol. 2017 Jun 9;97(6):711-714. https://doi.org/10.2340/00015555-2633.
- 11. Yilmaz O, Turkeli A, Karaca O, Yuksel H. Evaluation of the influence of an asthmatic sibling on the quality of life in children using the Turkish version of pedsql short form 15. Turk Arch Ped 2013; 48 (Suppl): 9.
- 12. Yilmaz G, Küçük Alemdar D. Evaluation of care burden among mothers of children with a disability: Correlation between physical activity, quality of life, and sleep quality; a cross-sectional study. Perspect Psychiatr Care. 2021 Jan;57(1):129-137. https://doi.org/10.1111/ppc.12534.
- 13. Yüksel H, Yılmaz Çiftdoğan D, yılmazö, Söğüt A. Evaluation of sleep quality in mothers of children with bronchiolitis obliterans, Turk Arch Ped 2009; 44: 99-102.
- 14. Fishbein AB, Cheng BT, Tilley CC, Begolka WS, Carle AC, Forrest CB, Zee PC, Paller AS, Griffith JW. Sleep Disturbance in School-Aged Children with Atopic Dermatitis: Prevalence and Severity in a Cross-Sectional Sample. J Allergy Clin Immunol Pract. 2021 Aug;9(8):3120-3129.e3.https://doi.org/ 10.1016/j.jaip.2021.04.064.
- 15. Lang CP, Boucaut A, Guppy M, Johnston LM. Children with cerebral palsy: A cross-sectional study of their sleep and their caregiver's sleep quality, psychological health and well-being. Child Care Health Dev. 2021 Nov;47(6):859-868. https://doi.org/10.1111/cch.12897.
- 16. Bayram E ve ark. Epilepsi Tanısıyla İzlenen Hastalar ve Annelerinde Uyku Kalitesinin Değerlendirilmesi. İzmir Dr. Behçet Uz Çocuk Hast. Dergisi 2013; 3(2):87-92.
- 17. Safer VB. Serebral Palsili Çocukların ve Annelerin Uyku Kalitesini ve Annelerindeki Depresyonu Etkileyen Faktörler. Zeynep Kamil Tıp Bülteni;2017;48(2).
- 18. Yayici Koken O, Gultutan P, Gurkas E, Degerliyurt A. Sleep: How is it affected in patients with DMD and their mothers? Minerva Pediatr (Torino). 2021 May 31. https://doi.org/10.23736/S2724-5276.21.06281-9.
- 19. Filiz S, Keleş Ş, Akbulut UE, Işık IA, Kara MZ. Sleep disturbances and affecting factors in young children with food allergy and their mothers. Allergol Immunopathol (Madr). 2020 Mar-Apr;48(2):158-164. https://doi.org/ 10.1016/j.aller.2019.06.014.
- 20. Moore K, David TJ, Murray CS, Child F, Arkwright PD. Effect of childhood eczema and asthma on parental sleep and well-being: a prospective comparative study. Br J Dermatol. 2006 Mar;154(3):514-8. https://doi.org/ 10.1111/j.1365-2133.2005.07082.x.
- 21. World Health Organization. (2004). The World Health Organization quality of life (WHOQOL) - BREF, 2012 revision. World Health Organization. İnternet erişim adresi: https://apps.who.int/iris/handle/10665/77773, Erişim tarihi: 01.12.2021.
- 22. Slattery MJ, Essex MJ, Paletz EM, Vanness ER, Infante M, Rogers GM, Gern JE. Depression, anxiety, and dermatologic quality of life in adolescents with atopic dermatitis. J Allergy Clin Immunol. 2011 Sep;128(3):668-71. https://doi.org/ 10.1016/j.jaci.2011.05.003.
- 23. McKenna SP, Doward LC. Quality of life of children with atopic dermatitis and their families. Curr Opin Allergy Clin Immunol. 2008 Jun;8(3):228-31. https://doi.org/10.1097/ACI.0b013e3282ffd6cc.
- 24. Çömlek FÖ, Toprak A, & Nursoy MA. (2020). Çocukluk çağı atopik dermatitli hastalarda ve ailelerinde dermatolojik yaşam kalitesi değerlendirilmesi. Turkish Archives of Pediatrics, 55(3).
- 25. Siafaka V, Zioga A, Evrenoglou T, Mavridis D, Tsabouri S. Illness perceptions and quality of life in families with child with atopic dermatitis. Allergol Immunopathol (Madr). 2020 Nov-Dec;48(6):603-611. https://doi.org/ 10.1016/j.aller.2020.03.003.
- 26. Al Shobaili HA. The impact of childhood atopic dermatitis on the patients' family. Pediatr Dermatol. 2010 Nov-Dec;27(6):618-23. https://doi.org/ 10.1111/j.1525-1470.2010.01215.x.
- 27. Pedersen CJ, Uddin MJ, Saha SK, Darmstadt GL. Prevalence and psychosocial impact of atopic dermatitis in Bangladeshi children and families. PLoS One. 2021 Apr 16;16(4):e0249824. https://doi.org/10.1371/journal.pone.0249824.
- 28. Huang J, Choo YJ, Smith HE, Apfelbacher C. Quality of life in atopic dermatitis in Asian countries: a systematic review. Arch Dermatol Res. 2021 Jun 4. https://doi.org/10.1007/s00403-021-02246-7.
- 29. Gunduz S, Usak E, Ozen S, Gorpelioglu C. Obsessive Compulsive Symptoms and Quality of Life in mothers of Children With Atopic Dermatitis. Actas Dermosifiliogr. 2017 Jun;108(5):432-437. https://doi.org/10.1016/j.ad.2017.01.004.
- 30. Mollaoğlu M. Kronik hastalıklarda yaşam kalitesi ve hemşirelik. 2. Sağlıkta Yaşam Kalitesi Kongre Özet Kitabı 2007.p.9–10.
- 31. Murray JS. Attachment theory and adjustment difficulties in siblings of children with cancer. Issues Ment Health Nurs. 2000 Mar;21(2):149-69. https://doi.org/ 10.1080/016128400248167.
- 32. Yılmaz Ö, Türkeli A, Karaca Ö, Yüksel H. Does having an asthmatic sibling affect the quality of life in children? Turk J Pediatr. 2017;59(3):274-280. https://doi.org/10.24953/turkjped.2017.03.007.
Atopik dermatit tanılı çocukların aile bireylerinde yaşam ve uyku kalitesinin değerlendirilmesi
Year 2022,
, 475 - 483, 01.07.2022
Savaş Sari
,
Damla Geçkalan Soysal
,
Ahmet Turkeli
Abstract
Amaç: Atopik dermatit (AD) sıklıkla infant ve çocukluk döneminde görülen, iyileşme ve alevlenme ataklarıyla kronik seyir gösteren, yoğun kaşıntılı inflamatuar bir deri hastalığıdır. Diğer kronik hastalıklarda olduğu gibi AD hastalarında hasta bakımı ve tedavi süreci uzun süre almaktadır. Bu da hasta bireyler kadar hasta bireylerin ailelerinin yaşam kalitesini ve uykusunu önemli ölçüde etkileyebilmektedir. Hem hastaların hem ailelerin yaşam kalitesini bozmaktadır. Bu çalışmada 6 ay-6 yaş arasındaki AD tanılı çocukların annelerinin yaşam ve uyku kalitesi ile 2-4 yaş arası sağlıklı kardeşlerinin yaşam kalitesinin değerlendirilmesi amaçlandı.
Gerç ve yöntem: Çocuk alerji ve immünoloji polikliniğine Aralık 2019-Şubat 2020 tarihleri arasında başvuran 6 ay-6 yaş aralığındaki AD tanılı 50 hastanın anneleri ve 2-4 yaş arasındaki kardeşleri ile 6 ay-6 yaş aralığındaki sağlıklı 50 çocuğun anneleri ve 2-4 yaş arasındaki kardeşleri çalışmaya kontrol grubu olarak dahil edildi. AD tanısı Hanifin-Rajka kriterlerine göre konuldu. Hastalık şiddeti SCORAD İndeksi ile değerlendirildi. Pediatrik Yaşam Kalitesi Ölçeği olan PedsQLTM Versiyon 4.0 Kısa Form 15, aile etki ölçeği ebeveyn raporu ( PedsQLTM Family impact Module ) ve Pittsburgh Uyku Kalitesi İndeksi (PUKI) anneler tarafından dolduruldu.
Bulgular: Atopik dermatit tanılı çocukların annelerinin aile etki ölçeği toplam skoru kontrol gurubuna göre anlamlı düşük bulundu. Atopik dermatitli çocukların kardeşlerinin yaşam kalitesi skoru kontrol gurubuna göre anlamlı düşük saptandı. Annelerin PUKI puanlarına bakıldığında alışılmış uyku etkinliği ve uykuya yardımcı ilaç kullanımı dışında tüm parametrelerde her iki grup arasında istatistiksel anlamlı fark saptandı.
Sonuç: Atopik dermatitli olguların aile bireylerinin yaşam kalitesinin düştüğü, uyku kalitesinin bozulduğu sonuçlarına varılmakla birlikte, daha sağlıklı veriler elde edilebilmesi için daha geniş katılımlı ve çok merkezli destekleyici çalışmalara ihtiyaç olduğu kanısındayız.
References
- 1. Halfon N, Newacheck PW. Evolving notions of childhood chronic illness. JAMA. 2010 Feb 17;303(7):665-6. https://doi.org/10.1001/jama.2010.130.
- 2. Karimi M, Brazier J. Health, Health-Related Quality of Life, and Quality of Life: What is the Difference? Pharmacoeconomics. 2016 Jul;34(7):645-9. https://doi.org/10.1007/s40273-016-0389-9.
- 3. O' Brien I, Duffy A, Nicholl H. Impact of childhood chronic illnesses on siblings: a literature review. Br J Nurs. 2009 Dec 10-2010 Jan 13;18(22):1358, 1360-5. https://doi.org/10.12968/bjon.2009.18.22.45562.
- 4. Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care. 1999 Feb;37(2):126-39. https://doi.org/10.1097/00005650-199902000-00003.
- 5. Siegfried EC, Hebert AA. Diagnosis of Atopic Dermatitis: Mimics, Overlaps, and Complications. J Clin Med. 2015 May 6;4(5):884-917. https://doi.org/ 10.3390/jcm4050884.
- 6. Al-Adawiyah R, Putera AM, Astari L, Ariyanto FC. Determinant factors of recurrence atopic dermatitis symptoms in children: A cross-sectional study. Ann Med Surg (Lond). 2021 Sep 20;70:102847. https://doi.org/ 10.1016/j.amsu.2021.102847.
- 7. Kristal L, Klein PA. Atopic dermatitis in infants and children. An update. Pediatr Clin North Am. 2000 Aug;47(4):877-95. https://doi.org/10.1016/s0031-3955(05)70246-7.
- 8. Basra MK, Gada V, Ungaro S, Finlay AY, Salek SM. Infants' Dermatitis Quality of Life Index: a decade of experience of validation and clinical application. Br J Dermatol. 2013 Oct;169(4):760-8. https://doi.org/10.1111/bjd.12563.
- 9. Bilaç C, Bilaç Ö, & Öztürkcan S. (2014). Çocuklarda dermatolojik hastalıklarda yaşam kalitesi. Archives of the Turkish Dermatology & Venerology/ Türkderm 2014; 48: 60-6. https:// doi.org/10.4274/turkderm.88886.
- 10. Marciniak J, Reich A, Szepietowski JC. Quality of Life of Parents of Children with Atopic Dermatitis. Acta Derm Venereol. 2017 Jun 9;97(6):711-714. https://doi.org/10.2340/00015555-2633.
- 11. Yilmaz O, Turkeli A, Karaca O, Yuksel H. Evaluation of the influence of an asthmatic sibling on the quality of life in children using the Turkish version of pedsql short form 15. Turk Arch Ped 2013; 48 (Suppl): 9.
- 12. Yilmaz G, Küçük Alemdar D. Evaluation of care burden among mothers of children with a disability: Correlation between physical activity, quality of life, and sleep quality; a cross-sectional study. Perspect Psychiatr Care. 2021 Jan;57(1):129-137. https://doi.org/10.1111/ppc.12534.
- 13. Yüksel H, Yılmaz Çiftdoğan D, yılmazö, Söğüt A. Evaluation of sleep quality in mothers of children with bronchiolitis obliterans, Turk Arch Ped 2009; 44: 99-102.
- 14. Fishbein AB, Cheng BT, Tilley CC, Begolka WS, Carle AC, Forrest CB, Zee PC, Paller AS, Griffith JW. Sleep Disturbance in School-Aged Children with Atopic Dermatitis: Prevalence and Severity in a Cross-Sectional Sample. J Allergy Clin Immunol Pract. 2021 Aug;9(8):3120-3129.e3.https://doi.org/ 10.1016/j.jaip.2021.04.064.
- 15. Lang CP, Boucaut A, Guppy M, Johnston LM. Children with cerebral palsy: A cross-sectional study of their sleep and their caregiver's sleep quality, psychological health and well-being. Child Care Health Dev. 2021 Nov;47(6):859-868. https://doi.org/10.1111/cch.12897.
- 16. Bayram E ve ark. Epilepsi Tanısıyla İzlenen Hastalar ve Annelerinde Uyku Kalitesinin Değerlendirilmesi. İzmir Dr. Behçet Uz Çocuk Hast. Dergisi 2013; 3(2):87-92.
- 17. Safer VB. Serebral Palsili Çocukların ve Annelerin Uyku Kalitesini ve Annelerindeki Depresyonu Etkileyen Faktörler. Zeynep Kamil Tıp Bülteni;2017;48(2).
- 18. Yayici Koken O, Gultutan P, Gurkas E, Degerliyurt A. Sleep: How is it affected in patients with DMD and their mothers? Minerva Pediatr (Torino). 2021 May 31. https://doi.org/10.23736/S2724-5276.21.06281-9.
- 19. Filiz S, Keleş Ş, Akbulut UE, Işık IA, Kara MZ. Sleep disturbances and affecting factors in young children with food allergy and their mothers. Allergol Immunopathol (Madr). 2020 Mar-Apr;48(2):158-164. https://doi.org/ 10.1016/j.aller.2019.06.014.
- 20. Moore K, David TJ, Murray CS, Child F, Arkwright PD. Effect of childhood eczema and asthma on parental sleep and well-being: a prospective comparative study. Br J Dermatol. 2006 Mar;154(3):514-8. https://doi.org/ 10.1111/j.1365-2133.2005.07082.x.
- 21. World Health Organization. (2004). The World Health Organization quality of life (WHOQOL) - BREF, 2012 revision. World Health Organization. İnternet erişim adresi: https://apps.who.int/iris/handle/10665/77773, Erişim tarihi: 01.12.2021.
- 22. Slattery MJ, Essex MJ, Paletz EM, Vanness ER, Infante M, Rogers GM, Gern JE. Depression, anxiety, and dermatologic quality of life in adolescents with atopic dermatitis. J Allergy Clin Immunol. 2011 Sep;128(3):668-71. https://doi.org/ 10.1016/j.jaci.2011.05.003.
- 23. McKenna SP, Doward LC. Quality of life of children with atopic dermatitis and their families. Curr Opin Allergy Clin Immunol. 2008 Jun;8(3):228-31. https://doi.org/10.1097/ACI.0b013e3282ffd6cc.
- 24. Çömlek FÖ, Toprak A, & Nursoy MA. (2020). Çocukluk çağı atopik dermatitli hastalarda ve ailelerinde dermatolojik yaşam kalitesi değerlendirilmesi. Turkish Archives of Pediatrics, 55(3).
- 25. Siafaka V, Zioga A, Evrenoglou T, Mavridis D, Tsabouri S. Illness perceptions and quality of life in families with child with atopic dermatitis. Allergol Immunopathol (Madr). 2020 Nov-Dec;48(6):603-611. https://doi.org/ 10.1016/j.aller.2020.03.003.
- 26. Al Shobaili HA. The impact of childhood atopic dermatitis on the patients' family. Pediatr Dermatol. 2010 Nov-Dec;27(6):618-23. https://doi.org/ 10.1111/j.1525-1470.2010.01215.x.
- 27. Pedersen CJ, Uddin MJ, Saha SK, Darmstadt GL. Prevalence and psychosocial impact of atopic dermatitis in Bangladeshi children and families. PLoS One. 2021 Apr 16;16(4):e0249824. https://doi.org/10.1371/journal.pone.0249824.
- 28. Huang J, Choo YJ, Smith HE, Apfelbacher C. Quality of life in atopic dermatitis in Asian countries: a systematic review. Arch Dermatol Res. 2021 Jun 4. https://doi.org/10.1007/s00403-021-02246-7.
- 29. Gunduz S, Usak E, Ozen S, Gorpelioglu C. Obsessive Compulsive Symptoms and Quality of Life in mothers of Children With Atopic Dermatitis. Actas Dermosifiliogr. 2017 Jun;108(5):432-437. https://doi.org/10.1016/j.ad.2017.01.004.
- 30. Mollaoğlu M. Kronik hastalıklarda yaşam kalitesi ve hemşirelik. 2. Sağlıkta Yaşam Kalitesi Kongre Özet Kitabı 2007.p.9–10.
- 31. Murray JS. Attachment theory and adjustment difficulties in siblings of children with cancer. Issues Ment Health Nurs. 2000 Mar;21(2):149-69. https://doi.org/ 10.1080/016128400248167.
- 32. Yılmaz Ö, Türkeli A, Karaca Ö, Yüksel H. Does having an asthmatic sibling affect the quality of life in children? Turk J Pediatr. 2017;59(3):274-280. https://doi.org/10.24953/turkjped.2017.03.007.