The Family Dermatology Life Quality Index – Validation of the Czech Version
Authors:
E. Březinová; M. Nečas; H. Jedličková; V. Vašků
Authors place of work:
I. dermatovenerologická klinika FN u sv. Anny, Lékařská fakulta Masarykovy univerzity, Brno, přednosta prof. MUDr. Vladimír Vašků, CSc.
Published in the journal:
Čes-slov Derm, 89, 2014, No. 6, p. 264-268
Category:
Pharmacologyand Therapy, Clinical Trials
Summary
The impact of skin disease on the quality of life (QoL) of patients is being examined in detail, but very little is known about the quality of life of family members and partners. Family members are often involved in care-giving and are negatively affected in many ways by a patient’s skin condition. The Family Dermatology Life Quality Index was created to measure the impact of skin disease on the QoL of the family member or partner objectively. This questionnaire did not exist in our language yet. That’s why we have made a validated Czech translation. The newly validated Czech version is fully understandable and clear for family members and partners of patients with skin disease. The results can be easily interpreted and suitable for both research and clinical practice. Patients‘ family members, especially the primary caregivers, need to be regarded as active participants in healthcare because of wide negative social impact of skin diseases.
Key words:
quality of life – quality of life questionniare – The Family Dermatology Life Quality Index (FDLQI)
Zdroje
1. BAILEY, D. B., McWILLIAM, R. A., DARKES, L. A. et al. Family outcomes in early intervention: a framework for program evaluation and efficacy research. Exceptional Children, 1998, 64, p. 313–328.
2. BASRA, M. K., FINLAY, A. Y. The family impact of skin diseases: the Greater Patient concept. Br. J. Dermatol., 2007, 156, p. 929–937.
3. BASRA, M. K., SUE-HO, R., FINLAY, A. Y. The Family Dermatology Life Quality Index: measuring the secondary impact of skin disease. Br. J. Dermatol., 2007, 156, p. 528–538.
4. BEN-GASHIR, M. A., SEED, P. T., HAY, R. J. Are quality of family life and disease severity related in childhood atopic dermatitis? J. Eur. Acad. Dermatol. Venereol., 2002, 16, p. 455–462.
5. BŘEZINOVÁ, E., NEČAS, M., JEDLIČKOVÁ, H., VAŠKŮ, V. Kvalita života. Stručný dotazník vnímání nemoci – nově v českém jazyce. Čes-slov Derm, 2013, roč. 88, č. 4, s. 247–251.
6. CARROLL, C. L., BALKRISHNAN, R., FELDMAN, S. R. et al. The Burden of Atopic Dermatitis: Impact on the Patient, Family, and Society. Pediatr. Dermatol., 2005, 22, p. 192–199.
7. FINLAY, A. Y. Quality of life assessments in Dermatology. Seminars in Cutaneous Medicine and Surgery, 1998, 17, 4, p. 291–296.
8. FINLAY, A. Y. Quality of life measurement in dermatology: a practical guide. Br. J. Dermatol., 1997, 136, p. 305–314.
9. GKALPAKIOTIS, S., ARENBERGER, P., ADENUBIOVÁ, E. Psychosociální aspekty života pacientů s psoriázou v České republice. Čes-slov Derm, 2013, roč. 88, č. 4, s. 189–196.
10. GUILLEMIN, F., BOMBARDIER, C., BEATON, D. Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelines. J. Clin. Epidemiol., 1993, 46, 12, p. 1417–1432.
11. JIRÁKOVÁ, A., SLAVÍKOVÁ, Š., VOJÁČKOVÁ, N., GÖPFERTOVÁ, D., HERCOGOVÁ, J. Vliv atopického ekzému dítěte na členy jeho rodiny – česká validace dotazníku. Čes-slov Derm, 2010, roč. 85, č. 6, s. 318–324.
12. KELLET, S. C., GAWKRODGER, D. J. The psychological and emotional impact of acne and the effect of treatment with isotretinoin. Br. J. Dermatol., 1999, 140, p. 273–282.
13. McKENNA, S. P., DOWARD, L. C. The Translation and Cultural Adaptation of Patient-Reported Outcome Measures. Value Health, 2005, 8, 2, p. 89–91.
14. SEMRÁDOVÁ, V. BALAŠTÍK, D. Možnosti hodnocení kvality života nemocných s psoriázou. Čes-slov Derm, 2003, roč. 78, č. 6, s. 228–231.
15. SEMRÁDOVÁ, V., BALAŠTÍK, D., VAŠKŮ, V., SLONKOVÁ, V. Skupinová psychoterapie u pacientů s psoriázou. Čes-slov Derm, 2007, roč. 82, č. 1, s. 26–30.
16. SEMRÁDOVÁ, V., VAŠKŮ, V., BALAŠTÍK, D., SLONKOVÁ, V. Kvalita života u pacientů s psoriasis vulgaris. I. Vliv terapie na kvalitu života. Čes-slov Derm, 2006, roč. 81, č. 3, s. 153–161.
17. SIEGEL, K., REVISES, V. H., HOUTS, P., MOR, V. Caregiver burden and unmet patient needs. Cancer, 1991, 68, p. 1131–1140.
18. SWAINE-VERDIER, A., DOWARD, L. C., HAGELL, P. et al. Adapting quality of life instruments. Value Health, 2004, 7 (Suppl.1), S27–30.
19. WARSCHBURGER, P., BUCHHOLZ, H. T., PETERMANN, F. Psychological adjustment in parents of young children with atopic dermatitis: which factors predict parental quality of life. Br. J. Dermatol., 2004, 150, p. 304–311.
20. WILD, D., GROVE, A., MARTIN, M. et al. Principles of good practice for the translation and cultural adaptation process for patient reported outcomes (PRO) measures: report of the ISPOR task force for translation and cultural adaptation. Value Health, 2005, 8, p. 94–104.
Štítky
Dermatology & STDs Paediatric dermatology & STDsČlánok vyšiel v časopise
Czech-Slovak Dermatology
2014 Číslo 6
Najčítanejšie v tomto čísle
- Phytophotodermatitis
- Hepatitis as a Rare Symptom of Secondary Syphilis – Case Report
- The Family Dermatology Life Quality Index – Validation of the Czech Version
- Buschke-Löwenstein Tumor in an Immunodeficient Patient – a Case Report and Review of Treatment Possibilities