Quality of life and family functioning in children with nonsyndromic orofacial clefts at preschool ages

被引:44
作者
Kramer, Franz-Josef [1 ]
Gruber, Rudolf [1 ]
Fialka, Florian [1 ]
Sinikovic, Branko [2 ]
Schliephake, Henning [1 ]
机构
[1] Univ Gottingen, Dept Oral & Maxillofacial Surg, D-37099 Gottingen, Germany
[2] Med Sch Hanover, Dept Oral & Maxillofacial Surg, Hannover, Germany
关键词
orofacial cleft; cleft lip palate; quality of life; children; family functioning; coping;
D O I
10.1097/SCS.0b013e31816aaa43
中图分类号
R61 [外科手术学];
学科分类号
摘要
Children with orofacial clefts (OFC) at preschool ages may have to tolerate psychosocial disadvantages due to their altered speech and facial appearance probably affecting their quality of life (QoL) and family functioning. In 147 children with OFC aged between 5 and 6 years and their families, the QoL and family functioning were analyzed using the KINDL questionnaire for measuring health-related QoL in children and impact on family scale. The KINDL scores were lowest in the dimension self-esteem. In all dimensions, the KINDL scores of children were higher than those of the parents suggesting a superior QoL than the care-givers estimated (P < 0.001). In affected families, the impact on family scale dimensions personal impact and impact on coping strategies were found highest. Families having children with isolated cleft lip or cleft lip and palate had higher impacts on coping strategies when compared with children having isolated cleft palate (P < 0.041). The impact for siblings (P < 0.02) was found highest in patients with cleft lip and palate. In all examined dimensions, children with OFC perceived a higher QoL than their caregivers expected. However, self-esteem seems to be problematic in all types of OFC and in both genders. Knowledge of potential impacts related to the type of cleft and the gender of the patient will probably facilitate health care professionals to identify children and families at high risk to experience a reduced QoL and may help to offer specific support and treatment strategies.
引用
收藏
页码:580 / 587
页数:8
相关论文
共 34 条
[1]  
Aaronson N, 2002, QUAL LIFE RES, V11, P193
[2]   PSYCHOLOGICAL CORRELATES OF TEENAGE MOTHERHOOD [J].
BARTH, RP ;
SCHINKE, SP ;
MAXWELL, JS .
JOURNAL OF YOUTH AND ADOLESCENCE, 1983, 12 (06) :471-487
[3]   Lebensqualitätsforschung bei Patienten mit Lippen-Kiefer-Gaumen-Spalten Erste ErgebnisseQuality of life research in patients with cleft lip and palate: preliminary results [J].
T. Bressmann ;
R. Sader ;
U. Ravens-Sieberer ;
H. -F. Zeilhofer ;
H. -H. Horch .
Mund-, Kiefer- und Gesichtschirurgie, 1999, 3 (3) :134-139
[4]  
BRODER HL, 1992, CLEFT PALATE-CRAN J, V29, P262, DOI 10.1597/1545-1569(1992)029<0262:HOPWCP>2.3.CO
[5]  
2
[6]  
Chapman KL, 1998, CLEFT PALATE-CRAN J, V35, P503, DOI 10.1597/1545-1569(1998)035<0503:CSOPAS>2.3.CO
[7]  
2
[8]   The complex genetics of cleft lip and palate [J].
Cobourne, MT .
EUROPEAN JOURNAL OF ORTHODONTICS, 2004, 26 (01) :7-16
[9]  
Glascoe F P, 2000, Pediatr Rev, V21, P272, DOI 10.1542/pir.21-8-272
[10]   BIRTH-DEFECTS AND PSYCHOSOCIAL ADJUSTMENT [J].
HELLER, A ;
RAFMAN, S ;
ZVAGULIS, I ;
PLESS, IB .
AMERICAN JOURNAL OF DISEASES OF CHILDREN, 1985, 139 (03) :257-263