Treatment goals and preferences of pediatric psoriasis patients, young adults, and parents

被引:6
作者
Schaap, Mirjam J. [1 ]
Broekhuis, Susanne C. E. [1 ]
Spillekom-van Koulil, Saskia [1 ,2 ]
Groenewoud, Hans M. M. [3 ]
de Jong, Elke M. G. J. [1 ]
Seyger, Marieke M. B. [1 ]
机构
[1] Radboud Univ Nijmegen, Dept Dermatol, Med Ctr, Nijmegen, Netherlands
[2] Radboud Univ Nijmegen, Radboud Inst Hlth Sci, Dept Med Psychol, Med Ctr, Nijmegen, Netherlands
[3] Radboud Univ Nijmegen, Dept Hlth Evidence, Nijmegen, Netherlands
关键词
Psoriasis; needs; treatment goals; young patients; pediatric; parents; QUALITY-OF-LIFE; CHILDHOOD PSORIASIS; MANAGEMENT; ADOLESCENTS; CHILDREN; HEALTH; NEEDS; CARE;
D O I
10.1080/09546634.2021.1985058
中图分类号
R75 [皮肤病学与性病学];
学科分类号
100206 ;
摘要
Background Treatment needs of young psoriasis patients and parents are not widely studied and could advance patient-centered care. Objective To explore treatment goals and preferences of pediatric psoriasis patients, young adults, and parents. Methods A web-based survey among Dutch psoriasis patients aged >= 6 to <= 30 years and parents included multiple-choice, open-ended, and 4-point Likert scale questions. Treatment goals and characteristic preferences of pediatric patients (<= 17 years) were compared to young adults (>= 18 years) and parents. Results 195 young patients (20.2 +/- 6.3 years) and 45 parents were included. The most important treatment goals were 'preventing lesions', 'reducing lesions', 'no itch', and 'no lesions'. Regarding treatment characteristics, 'long-term safety', 'high effectiveness', and 'short-term safety' were most important. We found differences by age, gender, and current treatment. Pediatric patients rated 'not sticky', 'quick results', and 'no/few blood samples needed' higher than parents and/or young adults. Young adults rated 'feeling more confident' and 'better quality of sleep' higher than pediatric patients. Parents considered safety most important. Psychosocial goals were more important for women and patients on biologics. Conclusion Young psoriasis patients and parents mainly strive to clear lesions and itch with effective and safe treatment. However, revealed differences underline the relevance of addressing individual needs.
引用
收藏
页码:2527 / 2533
页数:7
相关论文
共 24 条
[1]   Patient-relevant treatment goals in psoriasis [J].
Blome, Christine ;
Gosau, Ramona ;
Radtke, Marc A. ;
Reich, Kristian ;
Rustenbach, Stephan J. ;
Spehr, Christina ;
Thaci, Diamant ;
Augustin, Matthias .
ARCHIVES OF DERMATOLOGICAL RESEARCH, 2016, 308 (02) :69-78
[2]   Psoriasis in Children and Adolescents: Diagnosis, Management and Comorbidities [J].
Bronckers, I. M. G. J. ;
Paller, A. S. ;
van Geel, M. J. ;
van de Kerkhof, P. C. M. ;
Seyger, M. M. B. .
PEDIATRIC DRUGS, 2015, 17 (05) :373-384
[3]   A cross-sectional study using the Children's Dermatology Life Quality Index (CDLQI) in childhood psoriasis: negative effect on quality of life and moderate correlation of CDLQI with severity scores [J].
de Jager, M. E. A. ;
van de Kerkhof, P. C. M. ;
de Jong, E. M. G. J. ;
Seyger, M. M. B. .
BRITISH JOURNAL OF DERMATOLOGY, 2010, 163 (05) :1099-1101
[4]   THE BURDEN OF CHILDHOOD PSORIASIS [J].
De Jager, Michelle E. A. ;
De Jong, Elke M. G. J. ;
Evers, Andrea W. M. ;
Van De Kerkhof, Peter C. M. ;
Seyger, Marieke M. B. .
PEDIATRIC DERMATOLOGY, 2011, 28 (06) :736-737
[5]   Introduction to the Special Issue on Adolescent and Young Adult Health: Why We Care, How Far We Have Come, and Where We Are Going [J].
Devine, Katie A. ;
Monaghan, Maureen ;
Schwartz, Lisa A. .
JOURNAL OF PEDIATRIC PSYCHOLOGY, 2017, 42 (09) :903-909
[6]   Treatment preferences and treatment satisfaction among psoriasis patients: a systematic review [J].
Florek, Aleksandra G. ;
Wang, Catherine J. ;
Armstrong, April W. .
ARCHIVES OF DERMATOLOGICAL RESEARCH, 2018, 310 (04) :271-319
[7]   Quality of Life and Clinical Features in Swedish Children with Psoriasis [J].
Ganemo, Agneta ;
Wahlgren, Carl-Fredrik ;
Svensson, Ake .
PEDIATRIC DERMATOLOGY, 2011, 28 (04) :375-379
[8]   Systematic Review of Health-Related Quality of Life in Adolescents with Psoriasis [J].
Gonzalez, Jessica ;
Cunningham, Kiera ;
Perlmutter, Jason ;
Gottlieb, Alice .
DERMATOLOGY, 2016, 232 (05) :541-549
[9]   Facing the dilemma of patient-centred psoriasis care: a qualitative study identifying patient needs in dermatological outpatient clinics [J].
Khoury, L. R. ;
Skov, L. ;
Moller, T. .
BRITISH JOURNAL OF DERMATOLOGY, 2017, 177 (02) :436-444
[10]   Treatment goals in psoriasis from a patient perspective: a qualitative study [J].
Kouwenhoven, Tessa A. ;
van Der Ploeg, Jeroen A. M. ;
van de Kerkhof, Peter C. M. .
JOURNAL OF DERMATOLOGICAL TREATMENT, 2020, 31 (01) :13-17