hrp0092p1-125 | Sex Differentiation, Gonads and Gynaecology or Sex Endocrinology | ESPE2019

A Health-Related Quality of Life Tool for Parents of Young Children With Disorders of Sex Development

Ali Salma , Macqueen Zoe , Gardner Melissa , Sandberg David , Kyriakou Andreas , Mason Avril , Shaikh M. Guftar , Wong Sze Choong , Ahmed S. Faisal

Background: Disorders of sex development (DSD) may be associated with adverse psychosocial and psychosexual outcomes in adults. However, there is a paucity of information on health-related quality of life outcomes in parents and young children with DSD.Objective: To evaluate the use of parent-reported outcome (PRO) questionnaires that can be routinely used in the outpatient setting to assess the impact of DSD on parents ...

hrp0082p3-d3-792 | Fat Metabolism & Obesity (2) | ESPE2014

Frequency of Vegetable and Fruit Consumption in Overweight Children and Their Parents

Escobar Sandra Beatriz Escobar , Awadalla Shokery

Background: Increased incidence of obesity is related to increased consumption of fast and processed food and decreased consumption of fruits and vegetables.Objective and hypotheses: Evaluate the habit of fruit and vegetable consumption in children with overweight.Method: A questionnaire was designed in which the frequency and quality of these habits were recorded and anthropometric data also. ParentÂ’s habits regarding fruit a...

hrp0095fc10.5 | GH and IGFs | ESPE2022

Features and outcomes of syndromic vs non-syndromic children born small for gestational age (SGA) under growth hormone therapy in a Belgian cohort

Becker Marianne , Thomas Muriel , Brachet Cécile , Heinrichs Claudine , Dotremont Hilde , Logghe Karl , Casteels Kristina , Rochtus Anne , Klink Daniel , Cools Martine , De Waele Kathleen , Parent Anne-Simone , Massa Guy , Staels Willem , Gies Inge , Lysy Philippe , Beckers Dominique

Background and Aim: A substantial proportion of SGA patients have a syndrome underlying their growth restriction. Most SGA cohorts comprise both syndromic (S-SGA) and non-syndromic patients (nonS-SGA) impeding delineation of the recombinant human growth hormone (rhGH) response. We present a detailed characterization of the Belgian SGA cohort and analyze rhGH response based on adult height (AH).Patients & Methods: Cli...

hrp0086p2-p863 | Syndromes: Mechanisms and Management P2 | ESPE2016

Quality of Life in Growth Hormone Treated Children and Adolescents with Growth Hormone Deficiency and Smallness for Gestational Age

De Schepper Jean , Van der Straaten Saskia , Reynaert Nele , France Annick , Gies Inge , Parent Anne-Simon , Beauloye Veronique , Massa Guy , Beckers Dominique , Heinrichs Claudine , Logghe Karl , Depoorter Sylvia , Thomas Murielle , Verlinde Franciska , Vanderfaeillie Johan

Background: The potential benefit of growth hormone (GH) therapy on health-related QOL (HQoL) of children with short stature related to GH deficiency (GHD) or smallness for gestational age (SGA) has not been well documented.Objective and hypotheses: Our objective was to assess potential disease and treatment related predictors for a poor HQoL in GH treated children. Children with male gender, SGA disorder, greater height deficit at start of GH and poor h...

hrp0092p1-274 | Sex Differentiation, Gonads and Gynaecology or Sex Endocrinology (1) | ESPE2019

Quality of Life in Chilean Transgender Children, Adolescents, and Their Parents

Mendoza Carolina , Martínez-Aguayo Alejandro , Flores Mónica , Morales Cristobal

Background: Quality of life (QOL) includes physical, psychological and social aspects. Transgender (TG) children undergo problems in school and with family, friends, and social relationships. These adverse effects on physical and psychosocial health can impair their quality of life.Objective and Methods: This study aims to assess health-related quality of life (HRQOL), using the KIDSCREEN-52 questionnaire (Spanish versio...

hrp0084wg6.1 | Turner Syndrome | ESPE2015

Incidental Prenatal Diagnosis of Turner Syndrome, Perspectives of Parents and Professionals

Pieters Jacqueline

In the light of technologic advances in prenatal testing, more genetic information about the fetus will become available, some of which may have uncertain clinical significance. In the light of all new genetic diagnosing technologies, professional guidance of patients to reliable, tailored, and accurate information is essential. In this presentation I analyze and discuss the various aspects of parental attitudes and dilemmas, as well as professional opinions about the benefits...

hrp0082p2-d3-359 | Diabetes (2) | ESPE2014

The Sugarsquare Study: a Multicenter Randomized Controlled Trial Concerning a Web-based Patient Portal for Parents of a Child with Type 1 Diabetes

Boogerd Emiel , Verhaak Christianne , Kremer Jan , Prins Judith , Noordam Kees

Background: Raising a child diagnosed with type 1 diabetes can have a profound impact on parents. Having to combine the demands of the disease and treatment with every day parenting tasks can be overwhelming. Easy accessible communication with healthcare professionals was found to support parents in adequately coping with the disease and the disease self-management in everyday life, as well as peer support and tailored disease information. The Internet is regarded to be a suit...

hrp0095p1-327 | Growth and Syndromes | ESPE2022

A comprehensive assessment of patient-reported outcome measures in children and parents of children with achondroplasia: Results from a qualitative research and mapping exercise.

D. Mathias Susan , Hoover-Fong Julie , Savarirayan Ravi , Crews Chandler , Alves Inês , Noval Susan , Haider Amer , Cho Terry , Lee Anne , H. Colwell Hilary , Muslimova Elena

Objectives: Individuals with achondroplasia (ACH) experience medical, emotional and functional detriments during their lifetime. A comprehensive research initiative was conducted to include combined concept elicitation (CE) and cognitive debriefing (CD) interviews and mapping of concepts to identify the most relevant available patient-reported outcome (PRO) measures for inclusion in studies of ACH.Methods: Combined CE/CD...

hrp0084p2-251 | Diabetes | ESPE2015

Sick Day Rule: Survey of Parents of Children with Type 1 Diabetes (Experience and Knowledge)

Agwu Juliana Chizomam , Ng S May , Drew J , Edge J , Kershaw M , Wright N , Gardner C

Background: Inappropriate management of illness/stress, accidental or deliberate insulin omission are some of the causes of Diabetes ketoacidosis (DKA) in patients with established diabetes. During illness, patients with type 1 diabetes are advised to monitor for hyperglycaemia and ketosis, maintain fluid intake and if required, to administer supplemental insulin. Previous studies have confirmed that comprehensive diabetes self- management education (DSME) programs on manageme...

hrp0095rfc10.2 | GH and IGFs | ESPE2022

Severe primary IGF1 deficiency diagnosed by a standardized IGF1/ IGFBP3 generation test : the Belgian experience

Ryckx Sofie , Derycke Christine , Anckaert Ellen , Beauloye Véronique , Beckers Dominique , Brachet Cécile , Den Brinker Marieke , De Waele Kathleen , Dotremont Hilde , Boros Emese , Klink Daniel , Lebrethon Marie-Christine , Lysy Philippe , Mouraux Thierry , Parent Anne-Simone , Rochtus Ann , van der Straaten Saskia , De Schepper Jean

Background/ Aim: Over the past 6 years, the IGF1/ IGFBP3 generation test (IGFGT) has been used in Belgium in a standardized form to identify children with severe primary IGF1 deficiency (SPIGFD). In this study, the discordance of the IGF1 and IGFBP3 responses during an IGFGT and the prevalence of SPIGFD were analyzed in a cohort of children with short stature (height SDS < - 2) and presenting with low (below lower reference limit) serum IGF1 level and norma...