27 Einträge gefunden

1. Living with a rare disease - experiences and needs in pediatric patients and their parents

   1. Witt, Stefanie
   2. Schuett, Katharina
   3. Wiegand-Grefe, Silke
   4. Boettcher, Johannes
   5. Quitmann, Julia

   2023 - Forschungsinformationssystem des UKE - frei zugänglich
2. Caregiving burden and special needs of parents in the care of their short-statured children - a qualitative approach

   1. Lackner, Lea
   2. Quitmann, Julia Hannah
   3. Witt, Stefanie

   2023 - Forschungsinformationssystem des UKE - frei zugänglich
3. Caring for a Child with Congenital Adrenal Hyperplasia Diagnosed by Newborn Screening: Parental Health-Related Quality of Life, Coping Patterns, and Needs

   1. Rautmann, Laura
   2. Witt, Stefanie
   3. Theiding, Christoph
   4. Odenwald, Birgit
   5. Nennstiel-Ratzel, Uta
   6. Dörr, Helmuth-Günther
   7. Quitmann, Julia Hannah

   2023 - Forschungsinformationssystem des UKE - frei zugänglich
4. Effect of the addition of a mental health specialist for evaluation of undiagnosed patients in centres for rare diseases (ZSE-DUO):A prospective, controlled trial with a two-phase cohort design

   1. Hebestreit, Helge
   2. Lapstich, Anne-Marie
   3. Brandstetter, Lilly
   4. Krauth, Christian
   5. Deckert, Jürgen
   6. Haas, Kirsten
   7. Pfister, Lisa

   2023 - Forschungsinformationssystem des UKE - frei zugänglich
5. Factors of family impact in a Swedish-German cohort of children born with esophageal atresia

   1. Dellenmark-Blom, Michaela
   2. Abrahamsson, Kate
   3. Dingemann, Jens
   4. Witt, Stefanie
   5. Dingemann, Carmen
   6. Jönsson, Linus
   7. Gatzinsky, Vladimir

   2022 - Forschungsinformationssystem des UKE - frei zugänglich
6. Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany

   1. Witt, Stefanie
   2. Kristensen, Kaja
   3. Wiegand-Grefe, Silke
   4. Boettcher, Johannes
   5. Bloemeke, Janika
   6. Wingartz, Christina
   7. Bullinger, Monika

   2021 - Forschungsinformationssystem des UKE - frei zugänglich
7. Patient-Reported Outcomes-The Value of Observational Assessments

   1. Witt, Stefanie
   2. Bloemeke, Janika
   3. Bullinger, Monika
   4. Dingemann, Jens
   5. Dellenmark-Blom, Michaela
   6. Quitmann, Julia

   2021 - Forschungsinformationssystem des UKE
8. Parent-child-agreement on health-related quality of life and its determinants in patients born with Esophageal Atresia: a Swedish-German cross-sectional study

   1. Witt, Stefanie
   2. Dellenmark-Blom, Michaela
   3. Kuckuck, Susanne
   4. Dingemann, Jens
   5. Abrahamsson, Kate
   6. Dingemann, Carmen
   7. Chaplin, John Eric

   2021 - Forschungsinformationssystem des UKE - frei zugänglich
9. Health-Related Quality of Life of Children and Adolescents With Congenital Hyperinsulinism - A Scoping Review

   1. Kristensen, Kaja
   2. Quitmann, Julia
   3. Witt, Stefanie

   2021 - Forschungsinformationssystem des UKE - frei zugänglich
10. Parent-Child Assessment of Strengths and Difficulties of German Children and Adolescents Born With Esophageal Atresia

    1. Witt, Stefanie
    2. Dingemann, Jens
    3. Dellenmark-Blom, Michaela
    4. Quitmann, Julia

    2021 - Forschungsinformationssystem des UKE - frei zugänglich
11. Health-Related Quality of Life and Psychosocial Morbidity in Anorectal Malformation and Hirschsprung's Disease

    1. Feng, Xiaoyan
    2. Lacher, Martin
    3. Quitmann, Julia
    4. Witt, Stefanie
    5. Witvliet, Marieke J
    6. Mayer, Steffi

    2020 - Forschungsinformationssystem des UKE
12. Clinical Factors Affecting Condition-Specific Quality-of-Life Domains in Pediatric Patients after Repair of Esophageal Atresia: The Swedish-German EA-QOL Study

    1. Dellenmark-Blom, Michaela
    2. Quitmann, Julia
    3. Dingemann, Jens
    4. Witt, Stefanie
    5. Ure, Benno M
    6. Bullinger, Monika
    7. Jönsson, Linus

    2020 - Forschungsinformationssystem des UKE
13. Health-Related Quality of Life Assessment in Children and their Families:Aspects of Importance to the Pediatric Surgeon

    1. Bloemeke, Janika
    2. Witt, Stefanie
    3. Bullinger, Monika
    4. Dingemann, Jens
    5. Dellenmark-Blom, Michaela
    6. Quitmann, Julia

    2020 - Forschungsinformationssystem des UKE
14. Basic Principles of Health-Related Quality of Life in Parents and Caregivers of Pediatric Surgical Patients with Rare Congenital Malformations-A Scoping Review

    1. Witt, Stefanie
    2. Blömeke, Janika
    3. Bullinger, Monika
    4. Dingemann, Jens
    5. Quitmann, Julia

    2020 - Forschungsinformationssystem des UKE
15. Health-related quality of life experiences in children and adolescents born with esophageal atresia: A Swedish-German focus group study

    1. Witt, Stefanie
    2. Dellenmark-Blom, Michaela
    3. Flieder, Sofie
    4. Dingemann, Jens
    5. Abrahamsson, Kate
    6. Jönsson, Linus
    7. Gatzinsky, Vladimir

    2019 - Forschungsinformationssystem des UKE
16. Piloting and psychometric properties of a patient-reported outcome instrument for young people with achondroplasia based on the International Classification of Functioning Disability and Health: the Achondroplasia Personal Life Experience Scale (APLES)

    1. Bloemeke, Janika
    2. Sommer, Rachel
    3. Witt, Stefanie
    4. Dabs, Michaela
    5. Badia, Francisco Javier
    6. Bullinger, Monika
    7. Quitmann, Julia

    2019 - Forschungsinformationssystem des UKE
17. 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

    1. Witt, Stefanie
    2. Bloemeke, Janika
    3. Bullinger, Monika
    4. Dingemann, Jens
    5. Dellenmark-Blom, Michaela
    6. Quitmann, Julia

    2019 - Forschungsinformationssystem des UKE - frei zugänglich
18. Generic Health-Related Quality of Life after Repair of Esophageal Atresia and Its Determinants within a German-Swedish Cohort

    1. Flieder, Sofie
    2. Dellenmark-Blom, Michaela
    3. Witt, Stefanie
    4. Dingemann, Carmen
    5. Quitmann, Julia H
    6. Jönsson, Linus
    7. Gatzinsky, Vladimir

    2019 - Forschungsinformationssystem des UKE
19. Quality of Life of Short-Statured Children Born Small for Gestational Age or Idiopathic Growth Hormone Deficiency Within 1 Year of Growth Hormone Treatment

    1. Quitmann, Julia Hannah
    2. Bloemeke, Janika
    3. Silva, Neuza
    4. Bullinger, Monika
    5. Witt, Stefanie
    6. Akkurt, Ilker
    7. Dunstheimer, Desiree

    2019 - Forschungsinformationssystem des UKE - frei zugänglich
20. Cross-cultural selection and validation of instruments to assess patient-reported outcomes in children and adolescents with achondroplasia

    1. Bloemeke, Janika
    2. Sommer, Rachel
    3. Witt, Stefanie
    4. Bullinger, Monika
    5. Nordon, Clementine
    6. Badia, Francisco Javier
    7. González, Felipe Luna

    2019 - Forschungsinformationssystem des UKE