Detalhe da pesquisa
1.
[Quality of Life and Experienced Distress of Patients Suspected of having a Rare (Chronic) Health Condition - Initial Findings from the ZSE-DUO Study]. / Lebensqualität und erlebte Belastungen von Patient*innen mit Verdacht auf eine Seltene Erkrankung erste Erkenntnisse aus der ZSE-DUO Studie.
Psychother Psychosom Med Psychol
; 73(1): 9-15, 2023 Jan.
Artigo
em Alemão
| MEDLINE | ID: mdl-35793670
2.
Psychometric properties of the quality of life in short statured youth (QoLISSY) questionnaire within the course of growth hormone treatment.
Health Qual Life Outcomes
; 17(1): 49, 2019 Mar 18.
Artigo
em Inglês
| MEDLINE | ID: mdl-30885197
3.
Cross-cultural selection and validation of instruments to assess patient-reported outcomes in children and adolescents with achondroplasia.
Qual Life Res
; 28(9): 2553-2563, 2019 Sep.
Artigo
em Inglês
| MEDLINE | ID: mdl-31093848
4.
Agreement between mothers', fathers', and children's' ratings on health-related quality of life in children born with esophageal atresia - a German cross-sectional study.
BMC Pediatr
; 19(1): 330, 2019 09 11.
Artigo
em Inglês
| MEDLINE | ID: mdl-31510959
5.
Health-related quality of life experiences in children and adolescents born with esophageal atresia: A Swedish-German focus group study.
Child Care Health Dev
; 45(1): 79-88, 2019 01.
Artigo
em Inglês
| MEDLINE | ID: mdl-30221367
6.
Exploring the Potential of a Pretend Play Intervention in Young Patients With Leukemia.
J Pediatr Nurs
; 44: e98-e106, 2019.
Artigo
em Inglês
| MEDLINE | ID: mdl-30503254
7.
The Esophageal-Atresia-Quality-of-life Questionnaires: Feasibility, Validity and Reliability in Sweden and Germany.
J Pediatr Gastroenterol Nutr
; 67(4): 469-477, 2018 Oct.
Artigo
em Inglês
| MEDLINE | ID: mdl-29738345
8.
Children's psychosocial functioning and parents' quality of life in paediatric short stature: The mediating role of caregiving stress.
Clin Psychol Psychother
; 25(1): e107-e118, 2018 Jan.
Artigo
em Inglês
| MEDLINE | ID: mdl-28960605
9.
Understanding, Assessing and Improving Health-Related Quality of Life of Young People with Achondroplasia- A Collaboration between a Patient Organization and Academic Medicine.
Pediatr Endocrinol Rev
; 15(Suppl 1): 109-118, 2017 Nov.
Artigo
em Inglês
| MEDLINE | ID: mdl-29292874
10.
Growth hormone treatment in children with short stature: impact of the diagnosis on parents.
J Pediatr Endocrinol Metab
; 37(4): 326-335, 2024 Apr 25.
Artigo
em Inglês
| MEDLINE | ID: mdl-38421314
11.
DySMA - an Instrument to Monitor Swallowing Function in Children with Spinal Muscular Atrophy ages 0 to 24 Months: Development, Consensus, and Pilot Testing.
J Neuromuscul Dis
; 11(2): 473-483, 2024.
Artigo
em Inglês
| MEDLINE | ID: mdl-38457144
12.
Health-related quality of life and patient-reported outcome measurements in patients with cystinosis.
JIMD Rep
; 64(2): 199-211, 2023 Mar.
Artigo
em Inglês
| MEDLINE | ID: mdl-36873093
13.
Caregiving burden and special needs of parents in the care of their short-statured children - a qualitative approach.
Front Endocrinol (Lausanne)
; 14: 1093983, 2023.
Artigo
em Inglês
| MEDLINE | ID: mdl-37008922
14.
[Measures for optimal access to psychosocial care of children with rare diseases and their families]. / Maßnahmen für einen optimalen Zugang von Kindern mit seltenen Erkrankungen und ihrer Familien zur psychosozialen Versorgung.
Inn Med (Heidelb)
; 64(5): 494-499, 2023 May.
Artigo
em Alemão
| MEDLINE | ID: mdl-36988654
15.
Health-Related Quality of Life, Stress, Caregiving Burden and Special Needs of Parents Caring for a Short-Statured Child-Review and Recommendations for Future Research.
Int J Environ Res Public Health
; 20(16)2023 08 11.
Artigo
em Inglês
| MEDLINE | ID: mdl-37623144
16.
Parent Perceptions of a Pretend Play Intervention for Their Children With Cancer.
J Nurs Res
; 31(1): e253, 2023 Feb 01.
Artigo
em Inglês
| MEDLINE | ID: mdl-36315121
17.
Living with a rare disease - experiences and needs in pediatric patients and their parents.
Orphanet J Rare Dis
; 18(1): 242, 2023 08 11.
Artigo
em Inglês
| MEDLINE | ID: mdl-37568186
18.
Effects of a Pretend Play Intervention on Health-Related Quality of Life in Children With Cancer: A Swedish-German Study.
J Pediatr Hematol Oncol Nurs
; 40(3): 158-169, 2023.
Artigo
em Inglês
| MEDLINE | ID: mdl-36734043
19.
Caring for a Child with Congenital Adrenal Hyperplasia Diagnosed by Newborn Screening: Parental Health-Related Quality of Life, Coping Patterns, and Needs.
Int J Environ Res Public Health
; 20(5)2023 03 03.
Artigo
em Inglês
| MEDLINE | ID: mdl-36901502
20.
Increased Digital Media Use in Preschool Children: Exploring the Links with Parental Stress and Their Problematic Media Use.
Children (Basel)
; 10(12)2023 Dec 13.
Artigo
em Inglês
| MEDLINE | ID: mdl-38136123