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Quality of life of children with achondroplasia and their parents - a German cross-sectional study

Orphanet journal of rare diseases, 2019-08, Vol.14 (1), p.194-194, Article 194

2019

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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 pediatrics, 2019-09, Vol.19 (1), p.330-330, Article 330

2019

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Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany

Orphanet journal of rare diseases, 2021-11, Vol.16 (1), p.497-497, Article 497

2021

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Psychometric properties of the quality of life in short statured youth (QoLISSY) questionnaire within the course of growth hormone treatment

Health and quality of life outcomes, 2019-03, Vol.17 (1), p.49-15, Article 49

2019

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“It depends on the people!” – A qualitative analysis of contextual factors, prior to the implementation of digital health innovations for chronic condition management, in a German integrated care network

Digital health, 2023-01, Vol.9, p.20552076231222100-20552076231222100

2023

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Engaging primary care professionals in OECD’s international PaRIS survey: a documentary analysis

Health research policy and systems, 2024-07, Vol.22 (1), p.1-12, Article 76

2024

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Design, implementation and usability analysis of patient empowerment in ADLIFE project via patient reported outcome measures and shared decision making

BMC medical informatics and decision making, 2024-06, Vol.24 (1), p.1-21, Article 185

2024

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Quality of Life of Short-Statured Children Born Small for Gestational Age or Idiopathic Growth Hormone Deficiency Within 1 Year of Growth Hormone Treatment

Frontiers in pediatrics, 2019-04, Vol.7, p.164-164

2019

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International cross-cultural development and field testing of the primary care practice questionnaire for the PaRIS survey (PaRIS-PCPQ)

BMC primary care, 2024-05, Vol.25 (1), p.168-168, Article 168

2024

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Growth hormone treatment in children with short stature: impact of the diagnosis on parents

Journal of pediatric endocrinology & metabolism : JPEM, 2024-04, Vol.37 (4), p.326

2024

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An ICF-CY-based approach to assessing self- and observer-reported functioning in young persons with achondroplasia - development of the pilot version of the Achondroplasia Personal Life Experience Scale (APLES)

Disability and rehabilitation, 2017-11, Vol.39 (24), p.2499-2503

2017

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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)

Disability and rehabilitation, 2019-07, Vol.41 (15), p.1815-1825

2019

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Basic Principles of Health-Related Quality of Life in Parents and Caregivers of Pediatric Surgical Patients with Rare Congenital Malformations-A Scoping Review

European journal of pediatric surgery, 2020-06, Vol.30 (3), p.225

2020

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A qualitative analysis of the key contextual factors for the scaling-up of the ADLIFE toolbox in the Basque Health Service

International journal of integrated care, 2023-12, Vol.23 (S1), p.631

2023

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Health-Related Quality of Life Assessment in Children and their Families: Aspects of Importance to the Pediatric Surgeon

European journal of pediatric surgery, 2020-06, Vol.30 (3), p.232

2020

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Psychometric performance of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire in a randomized open-label comparator trial in idiopathic short stature

Journal of pediatric endocrinology & metabolism : JPEM, 2019-10, Vol.32 (10), p.1089

2019

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Cross-cultural selection and validation of instruments to assess patient-reported outcomes in children and adolescents with achondroplasia

Quality of life research, 2019-09, Vol.28 (9), p.2553-2563

2019

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Assessment of the Effectiveness, Socio-Economic Impact and Implementation of a Digital Solution for Patients with Advanced Chronic Diseases: The ADLIFE Study Protocol

International journal of environmental research and public health, 2023-02, Vol.20 (4), p.3152

2023

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Quality of Life in Adolescent Boys with Idiopathic Short Stature: Positive Impact of Growth Hormone and Aromatase Inhibitors

Hormone research in paediatrics, 2018-01, Vol.90 (6), p.381-392

2018

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Enabling Patient Adherence via Personalised, Just-in Time Adaptive Interventions in ADLIFE Architecture

Proceedings of the 10th International Conference on Software Development and Technologies for Enhancing Accessibility and Fighting Info-exclusion, 2022, p.44-49

2022

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Lebensqualität von kleinwüchsigen Kindern und Jugendlichen und Wachstumshormontherapie

Monatsschrift Kinderheilkunde, 2024-07, Vol.172 (7), p.615-622

2024

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All hands on deck: Co-developing the first international survey of people living with chronic conditions: Stakeholder engagement in the design, development, and field trial implementation of the PaRIS survey

OECD Health Working Papers, 2023-01 (149), p.0_1-52

2023

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Quality of life of children with achondroplasia and their parents - a German cross-sectional study

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

Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany

Assessing the outcomes and experiences of care from the perspective of people living with chronic conditions, to support countries in developing people-centred policies and practices: study protocol of the International Survey of People Living with Chronic Conditions (PaRIS survey)

Psychometric properties of the quality of life in short statured youth (QoLISSY) questionnaire within the course of growth hormone treatment

“It depends on the people!” – A qualitative analysis of contextual factors, prior to the implementation of digital health innovations for chronic condition management, in a German integrated care network

Engaging primary care professionals in OECD’s international PaRIS survey: a documentary analysis

Design, implementation and usability analysis of patient empowerment in ADLIFE project via patient reported outcome measures and shared decision making

Quality of Life of Short-Statured Children Born Small for Gestational Age or Idiopathic Growth Hormone Deficiency Within 1 Year of Growth Hormone Treatment

International cross-cultural development and field testing of the primary care practice questionnaire for the PaRIS survey (PaRIS-PCPQ)

Growth hormone treatment in children with short stature: impact of the diagnosis on parents

An ICF-CY-based approach to assessing self- and observer-reported functioning in young persons with achondroplasia - development of the pilot version of the Achondroplasia Personal Life Experience Scale (APLES)

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)

Basic Principles of Health-Related Quality of Life in Parents and Caregivers of Pediatric Surgical Patients with Rare Congenital Malformations-A Scoping Review

A qualitative analysis of the key contextual factors for the scaling-up of the ADLIFE toolbox in the Basque Health Service

Health-Related Quality of Life Assessment in Children and their Families: Aspects of Importance to the Pediatric Surgeon

Psychometric performance of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire in a randomized open-label comparator trial in idiopathic short stature

Cross-cultural selection and validation of instruments to assess patient-reported outcomes in children and adolescents with achondroplasia

Assessment of the Effectiveness, Socio-Economic Impact and Implementation of a Digital Solution for Patients with Advanced Chronic Diseases: The ADLIFE Study Protocol

Quality of Life in Adolescent Boys with Idiopathic Short Stature: Positive Impact of Growth Hormone and Aromatase Inhibitors

Enabling Patient Adherence via Personalised, Just-in Time Adaptive Interventions in ADLIFE Architecture

Lebensqualität von kleinwüchsigen Kindern und Jugendlichen und Wachstumshormontherapie

All hands on deck: Co-developing the first international survey of people living with chronic conditions: Stakeholder engagement in the design, development, and field trial implementation of the PaRIS survey

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