The development of a patient knowledge test on maternal phenylketonuria

Shiloh, Shoshana; James, Paula St.; Waisbren, Susan E.

doi:10.1016/0738-3991(90)90088-3

Cited by 9 publications

(8 citation statements)

References 15 publications

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“…The PKU knowledge scores in this population were generally good and higher than those in previous studies (Shiloh et al. , 1990; Gleason et al.…”

Section: Discussioncontrasting

confidence: 61%

“…The PKU knowledge scores in this population were generally good and higher than those in previous studies (Shiloh et al, 1990;Gleason et al, 1992;Weglage et al, 1996;Singh et al, 2000;Bekhof et al, 2003). This is a possible consequence of a self-selection bias, with those with better knowledge returning the questionnaire and in turn influencing the apparent impact of the resource upon knowledge and indeed compliance and serum phenylalanine concentrations.…”

Section: Discussioncontrasting

confidence: 54%

“…Knowledge was measured by a series of 20 questions relating to PKU physiology and management developed from previously published PKU questionnaires (Shiloh et al, 1990;Bekhof et al, 2003). The questionnaire consisted of 20 statements followed by a true/false/don't know response-set.…”

Section: Outcome Measuresmentioning

confidence: 99%

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Knowledge, compliance and serum phenylalanine concentrations in adolescents and adults with phenylketonuria and the effect of a patient‐focused educational resource

Durham-Shearer

Judd

Whelan

et al. 2008

J Human Nutrition Diet

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“…The PKU knowledge scores in this population were generally good and higher than those in previous studies (Shiloh et al. , 1990; Gleason et al.…”

Section: Discussioncontrasting

confidence: 61%

Section: Discussioncontrasting

confidence: 54%

See 1 more Smart Citation

Knowledge, compliance and serum phenylalanine concentrations in adolescents and adults with phenylketonuria and the effect of a patient‐focused educational resource

Durham-Shearer

Judd

Whelan

et al. 2008

J Human Nutrition Diet

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“…A brief interview devised for this study included questions about attitudes towards treatment and life stresses. Psychosocial questionnaires measuring knowledge of maternal PKU (Shiloh et al 1990), self-esteem (Rosenberg 1965) and locus of control (Nowicki and Duke 1974) were administered at 6 and 32 weeks gestation. Birth outcome variables included length, weight and head circumference, which were converted to z-scores (Karlberg et al 1985); gestational age; and the presence or absence of heart defects or other anomalies.…”

Section: Methodsmentioning

confidence: 99%

The Resource Mothers Study of Maternal Phenylketonuria: Preliminary findings

Rohr¹,

Munier²,

Sullivan³

et al. 2004

J of Inher Metab Disea

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Women with phenylketonuria (PKU) must follow a strict low-phenylalanine diet during pregnancy in order to protect the fetus from the deleterious effects of high maternal blood phenylalanine. The Resource Mothers Study of Maternal PKU was undertaken to determine whether a home visitation programme was effective in helping women with PKU attain blood phenylalanine control earlier during pregnancy. Resource Mothers were trained to provide social support and practical assistance to women with PKU during pregnancy. Eight metabolic clinics in the United States participated in the study. Women with PKU who were planning pregnancy or already pregnant were enrolled in the study and were treated with a low-phenylalanine diet aimed at controlling blood phenylalanine to 120-360 micromol/L. They were randomly assigned to receive the services of a Resource Mother (RM group) or to a control group. Fifty women were enrolled, and accounted for 44 pregnancies which resulted in 28 live births, and 6 spontaneous abortions. Ten women are currently pregnant and another 6 have not become pregnant. Fifty-six percent of enrolled women began the diet prior to becoming pregnant. Fifty-three percent of women in the Resource Mother group were in metabolic control by 10 weeks gestation as compared to 39% in the control group. In addition, women who began diet after pregnancy and had a Resource Mother attained metabolic control earlier (mean gestational age of 22.4 weeks in the RM group vs 29.8 weeks in the control group). There was no difference in birth measurement z -scores of offspring born to women in the RM group compared to controls. All but 4 women rated themselves as feeling worse about the diet at the end of pregnancy than at the beginning, and few women in either group remained on diet after delivery.

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“…SCS [20] consists of 12 items with four response choices from ''not at all satisfied'' 00, to ''as satisfied as possible'' 04. The scale is created to evaluate three dimensions (each subscale includes three items): ''Instrumental satisfaction'', ''Affective satisfaction'', and ''Procedural satisfaction''.…”

Section: Methodsmentioning

confidence: 99%