Nutrition education tools used in <scp>p</scp>henylketonuria: clinician, parent and patient perspectives from three international surveys

Bernstein, Laurie; Helm, Joanna R.; Rocha, Júlio César; Almeida, Manuela Ferreira de; Feillet, François; Link, R.; Giżewska, Maria

doi:10.1111/jhn.12065

Cited by 13 publications

(21 citation statements)

References 22 publications

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“…This Utilization and perceived effectiveness of group clinic Fig. 3.6 Group clinic is the least utilized educational tool among international clinicians ( a ) but is perceived to be the most effective, second to one-on-one counseling ( b ) [ 8 ] data aligns with the responses from the clinicians, indicating that parents and family are an integral piece to patient learning during childhood. Patient responses also noted that printed material and handouts are the least effective tool for learning (Fig.…”

Section: Hyperphenylalaninemiamentioning

confidence: 54%

“…Bernstein et al [ 8 ] also reported a discrepancy between the tools utilized in clinic and the clinician's perceived effectiveness of these tools. For example, printed materials were reported as the second most utilized educational tool, behind one-on-one counseling, yet clinicians view handouts as the least effective educational tool (Fig.…”

Section: Clinic Encounter Checklistsmentioning

confidence: 95%

“…Bernstein et al [ 8 ] addressed what types of patient education tools are currently used in international inherited metabolic disease clinics. A series of surveys were distributed to clinicians working with inherited metabolic disorders as well as to patients and families affected by PKU.…”

Section: Utilization and Perceived Effectiveness Of Educational Toolsmentioning

confidence: 99%

“…3.6 ). Yet clinicians perceive group clinic to be the most effective tool, second to one-on-one counseling, while only a quarter of international clinics currently offer group clinic (26 %) [ 8 ].…”

Section: Hyperphenylalaninemiamentioning

confidence: 99%

“…The majority of clinicians (86.1 %) agreed that nutrition education affects dietary compliance in their patients. Perceived barriers to dietary compliance included embarrassment and/or frustration with the diet, poor family cohesion, diffi culty in food preparation, and the inconvenience of the diet [ 8 ].…”

Section: Utilization and Perceived Effectiveness Of Educational Toolsmentioning

confidence: 99%

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Nutrition Education

Bernstein¹,

Helm²

2015

Nutrition Management of Inherited Metabolic Diseases

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Section: Hyperphenylalaninemiamentioning

confidence: 54%

Section: Clinic Encounter Checklistsmentioning

confidence: 95%

Section: Utilization and Perceived Effectiveness Of Educational Toolsmentioning

confidence: 99%

Section: Hyperphenylalaninemiamentioning

confidence: 99%

Section: Utilization and Perceived Effectiveness Of Educational Toolsmentioning

confidence: 99%

See 3 more Smart Citations

Nutrition Education

Bernstein¹,

Helm²

2015

Nutrition Management of Inherited Metabolic Diseases

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Phenylketonuria patients’ and their parents’ acceptance of the disease: multi-centre study

et al. 2016

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PurposePhenylketonuria (PKU) still poses a therapeutic challenge for patients and medical professionals. The aim of the study was to assess both patients’ and their parents’ acceptance of the disease.MethodsThe study included 218 PKU patients and 178 parents of PKU children who were enrolled in the study on the basis of questionnaire data.ResultsRegarding attitude towards the disease, our study demonstrated that 63 (28.9 %) PKU patients did not accept the disease. Patients who found accepting the disease difficult, more frequently perceived themselves as inferior/different in comparison with their peers. In total, 36 % of patients did not want their friends to be aware of their condition, while only 18 % of parents believed that their children’s peers should not know about their disease. In total, 42 % of parents wanted to talk to other parents of PKU children and only 13 % to a doctor. Only 20 % of patients saw the need to discuss their condition with a doctor. In total, 8 % of children, regardless of age, and 14 % of parents preferred to talk to a psychologist.ConclusionOur data demonstrated that disease acceptance played an essential role in patients’ social integration. The study also indicated the need to overcome communication barriers between patients and their healthy peers and for patients to find the courage to be open about the disease. The importance of support groups for PKU families and the significance of strict cooperation between patients and their families with PKU treatment teams were also revealed.

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Development of a practical dietitian road map for the nutritional management of phenylketonuria (PKU) patients on pegvaliase

Rocha

Bausell

Bélanger-Quintana

et al. 2021

Molecular Genetics and Metabolism Reports

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Nutrition education tools used in phenylketonuria: clinician, parent and patient perspectives from three international surveys

Abstract: There was a discrepancy between clinicians and patient views regarding the perceived effectiveness of the nutrition education tools. Future research is needed surrounding the impact nutrition education may have on improved dietary compliance in patients with PKU.

Cited by 13 publications

References 22 publications

Nutrition Education

Nutrition Education

Phenylketonuria patients’ and their parents’ acceptance of the disease: multi-centre study

Development of a practical dietitian road map for the nutritional management of phenylketonuria (PKU) patients on pegvaliase

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