Research graph
References from The psychological burden of nutritional treatment in inherited metabolic disorders: Navigating daily life. Local targets link to admitted publications; unresolved targets remain external evidence.
Unresolved reference
2022 · External reference
Safety issues associated with dietary management in patients with hepatic glycogen storage disease
10.1016/j.ymgme.2018.07.004 · 2018 · External reference
Organic acidurias in adults: late complications and management
10.1007/s10545-017-0135-2 · 2018 · External reference
Psychosocial challenges facing young people with inherited metabolic disorders and their parents: a systematic review
2025 · External reference
Quality of life in children treated with restrictive diet for inherited metabolic disease
10.1111/ped.12089 · 2013 · External reference
Health-related quality of life in paediatric patients with intoxication-type inborn errors of metabolism: analysis of an international data set
10.1002/jimd.12301 · 2021 · External reference
Determinants of quality of life in children with inborn errors of metabolism receiving a restricted diet
10.1016/j.jpeds.2021.11.021 · 2022 · External reference
Long-term cognitive and psychosocial outcomes in adults with phenylketonuria
10.1002/jimd.12413 · 2021 · External reference
A retrospective study of eating and psychosocial problems in patients with hepatic glycogen storage diseases and idiopathic ketotic hypoglycemia: towards a standard set of patient-reported outcome measures
2022 · External reference
Dietary treatment in Dutch children with phenylketonuria: an inventory of associated social restrictions and eating problems
10.1016/j.nut.2021.111576 · 2022 · External reference
“Food” and “non-food” self-regulation in childhood: a review and reciprocal analysis
10.1186/s12966-020-00928-5 · 2020 · External reference
Using thematic analysis in psychology
10.1191/1478088706qp063oa · 2006 · External reference
Difficulties in daily life and associated factors, and QoL of children with inherited metabolic disease and their parents in Japan: a literature review
2017 · External reference
Health-related quality of life in a European sample of adults with early-treated classical PKU
10.1186/s13023-023-02917-w · 2023 · External reference
Quality of life in children living with PKU - a single-center, cross-sectional, observational study from Hungary
2021 · External reference
Quality of life of children with phenylketonuria at primary health care center in Cairo Egypt: an exploratory cross-sectional study
10.1080/17450128.2022.2129120 · 2023 · External reference
“I feel lucky” - gratitude among young adults with phenylketonuria (PKU)
10.1007/s10897-015-9931-8 · 2016 · External reference
Self-estimation of phenylketonuria patients on therapeutic diet. Psychological support
10.1515/dmpt-2020-0107 · 2020 · External reference
Everyday life, dietary practices, and health conditions of adult PKU patients: a multicenter, cross-sectional study
10.1159/000510260 · 2020 · External reference
Qualitative analysis of factors affecting adherence to the phenylketonuria diet in adolescents
10.1097/nur.0b013e31829555d5 · 2013 · External reference
Situational analysis of dietary challenges of the treatment regimen for children and adolescents with phenylketonuria and their primary caregivers
10.1097/00004703-200506000-00004 · 2005 · External reference
Promoting psychological well-being in women with phenylketonuria: pregnancy-related stresses, coping strategies and supports
2014 · External reference
The impact on quality of life of diet restrictions and disease symptoms associated with phenylketonuria: a time trade-off and discrete choice experiment study
10.1007/s10198-021-01415-9 · 2022 · External reference
Mealtime anxiety and coping behaviour in parents and children during weaning in PKU: a case-control study
10.3390/nu11122857 · 2019 · External reference
A survey of eating attitudes and behaviors in adolescents and adults with phenylalanine hydroxylase deficiency
2020 · External reference
Living with phenylketonuria from the point of view of children, adolescents, and young adults: a qualitative study
10.1097/dbp.0b013e3182460d8a · 2012 · External reference
Coping with PKU: results of narrative interviews with parents
10.1007/bf02126299 · 1990 · External reference
Parental strategies to help children with phenylketonuria (PKU) cope with feeling different
10.1002/ajmg.a.37088 · 2015 · External reference
How individuals with phenylketonuria experience their illness: an age-related qualitative study
10.1111/j.1365-2214.2009.01000.x · 2010 · External reference
The effect of PKU diet on the maternal quality of life and social discrimination in relation to their educational status and place of living
10.1515/jpem-2018-0525 · 2019 · External reference
Parent reactions to childhood phenylketonuria
10.1037/1091-7527.23.2.204 · 2005 · External reference
Psychosocial aspects in phenylketonuria
10.1007/pl00014225 · 1996 · External reference
Treatment adherence and psychological wellbeing in maternal carers of children with phenylketonuria (PKU)
2017 · External reference
Parenting a child with phenylketonuria (PKU): an interpretative phenomenological analysis (IPA) of the experience of parents
10.1007/s10897-018-0227-7 · 2018 · External reference
Psychosocial functioning in children with phenylketonuria: relationships between quality of life and parenting indicators
10.1111/cch.12727 · 2020 · External reference
The impact of phenylketonuria on PKU patients’ quality of life: using of the phenylketonuria-quality of life (PKU-QOL) questionnaires
10.1016/j.clnesp.2018.06.005 · 2018 · External reference
Assessment of the impact of phenylketonuria and its treatment on quality of life of patients and parents from seven European countries
10.1186/s13023-015-0294-x · 2015 · External reference
Caring for a child with phenylketonuria: parental experiences from a Eurasian country
10.1097/dbp.0000000000000748 · 2020 · External reference
Parenting a child with metabolic diseases: impact on health related quality of life of parents
10.1016/j.dsx.2016.07.002 · 2017 · External reference
Experiences of caregivers of children with inherited metabolic diseases: a qualitative study
10.1186/s13023-016-0548-2 · 2016 · External reference
Living with an inborn error of metabolism detected by newborn screening-parents’ perspectives on child development and impact on family life
10.1007/s10545-013-9639-6 · 2014 · External reference
Parental and child’s psychosocial and financial burden living with an inherited metabolic disease identified by newborn screening
10.1002/jimd.12784 · 2025 · External reference
Perspectives on dietary adherence among women with inborn errors of metabolism
10.1016/j.jada.2009.10.030 · 2010 · External reference
Feeding difficulties in children with inherited metabolic disorders: a pilot study
10.1111/j.1365-277x.2012.01229.x · 2012 · External reference
Disordered eating and body esteem among individuals with glycogen storage disease
2015 · External reference
Caregiver quality of life with tyrosinemia type 1
10.1007/s10897-017-0157-9 · 2018 · External reference
Treatment adherence in type 1 hereditary Tyrosinaemia (HT1): a mixed-method investigation into the beliefs, attitudes and behaviour of adolescent patients, their families and their health-care team
2015 · External reference
The impact of galactosaemia on quality of life--a pilot study
10.1023/b:boli.0000042957.98782.e4 · 2004 · External reference
Living situation, occupation and health-related quality of life in adult patients with classic galactosemia
10.1007/s10545-012-9469-y · 2012 · External reference
Qualitative evaluation of the symptoms and quality of life impacts of long-chain fatty acid oxidation disorders
10.1177/20420188211065655 · 2022 · External reference
Psychosocial issues and coping strategies in families affected by long-chain fatty acid oxidation disorders
2024 · External reference
Symptoms and impacts of familial chylomicronemia syndrome: a qualitative study of the patient experience
10.1186/s13023-023-02927-8 · 2023 · External reference
“Why them, why me, why us?” the experiences of parents of children with lysosomal acid lipase deficiency: an interpretative phenomenological analysis study
10.1186/s13023-022-02335-4 · 2022 · External reference
Psychosocial issues and coping strategies in families affected by urea cycle disorders
10.1067/mpd.2001.111839 · 2001 · External reference
Mothers’ lived experience of caring for children with inborn errors of amino acid metabolism
10.1186/s12887-023-03946-x · 2023 · External reference
Cultural aspects in the management of inborn errors of metabolism
10.1007/s10545-012-9455-4 · 2012 · External reference
Family conditions and dietary control in phenylketonuria
10.1007/s10545-007-0493-2 · 2007 · External reference
Family social status and dietary adherence of patients with phenylketonuria
2011 · External reference
Familial variables as predictors of psychological maladjustment in Lithuanian children with phenylketonuria
2004 · External reference
Prevalence and predictors of parental distress at the communication of positivity at newborn screening for metabolic diseases: an Italian longitudinal study
10.1136/bmjpo-2024-003103 · 2024 · External reference
Availability of psychological resources for parents receiving communication of positivity at newborn screening for metabolic diseases in Italy
10.1007/s00431-023-05337-x · 2024 · External reference
The impact of decision tools during oncological consultation with lung cancer patients: a systematic review within the I3LUNG project
10.1002/cam4.7159 · 2024 · External reference
Interoception and body image in breast cancer patients: a mindfulness-based stress reduction protocol
10.3389/fpsyg.2024.1394355 · 2024 · External reference
How to improve emotional regulation in breast cancer survivors? A psychological intervention
10.3389/fpsyg.2024.1443635 · 2024 · External reference
The eHealth enhanced chronic care model: a theory derivation approach
10.2196/jmir.4067 · 2015 · External reference
Cognitive-behavioral therapy for children with comorbid physical illness
10.1016/j.chc.2011.01.013 · 2011 · External reference