Adaptation and Validation of a Questionnaire to Evaluate Knowledge of the Low Phe Diet in PKU.
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ABSTRACT:
SUBMITTER: Ramos-Alvarez R
PROVIDER: S-EPMC8400675 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundThe main treatment for phenylketonuria (PKU) is a low phenylalanine (Phe) diet, phenylalanine-free protein substitute and low-protein special foods. This study describes dietary composition and nutritional status in late-diagnosed adult patients adhering to a PKU diet.MethodsNineteen patients, followed at Oslo University Hospital in Norway, participated; median age was 48 years (range 26-66). Subjects were mild to severely mentally retarded. Food intake, clinical data and blood analyses relevant for nutritional status were assessed.ResultsMedian energy intake was 2,091 kcal/day (range 1,537-3,277 kcal/day). Carbohydrates constituted 59% (range 53-70%) of the total energy, including 15% from added sugar; 26% was from fat. The total protein intake was 1.02 g/kg/day (range 0.32-1.36 g/kg/day), including 0.74 g/kg/day (range 0.13-1.07 g/kg/day) from protein substitutes. Median dietary Phe intake was 746 mg/day (range 370-1,370 mg/day). Median serum Phe was 542 μmol/L (range 146-1,310 mg/day). Fortified protein substitutes supplied the main source of micronutrients. Iron intake was 39.5 mg/day (range 24.6-57 mg/day), exceeding the upper safe intake level. Intake of folate and folic acid, calculated as dietary folate equivalents, was 1,370 μg/day (range 347-1744 μg/day), and resulted in high blood folate concentrations. Median intake of vitamin B(12) was 7.0 μg/day (range 0.9-15.1 μg/day).ConclusionsThe diet supplied adequate protein and energy. Fortification of the protein substitutes resulted in excess intake of micronutrients. The protein substitutes may require adjustment to meet nutritional recommendations for adults with PKU.
| S-EPMC3575047 | biostudies-literature
Project description:Low adherence to cystic fibrosis (CF) treatment is associated with poor health outcomes, while knowledge of the disease and medication regimen can positively influence adherence. This study's purpose was to develop and validate a questionnaire to help determine CF medication knowledge of pediatric patients and caregivers. Our questionnaire had 37 items: 22 selected-response and 15 open-response questions. We used validation processes from the Standards for Educational and Psychological Testing. CF experts analyzed validity evidence based on content. Then, the questionnaire was field tested with 17 pediatric patients and 18 caregivers. The correlation between age and medication knowledge was medium (r = .33), but was not significant (P = .189). Cronbach's α for the overall test was .84. Participants thought the questionnaire was important and suitable, with a few minor suggestions to improve wording. Strong validity evidence indicates the questionnaire could be used to assess medication knowledge and allow more personalized education to improve adherence.
| S-EPMC5521333 | biostudies-other
Project description:Purpose:Assessment of medication errors (ME) is crucial to improving the quality of health care. A questionnaire that can be used to explore pharmacists' perspectives regarding ME would be very useful as part of an ongoing process of quality improvement in patient care. The aim of this study was to develop and validate a questionnaire to measure perceived causes of ME and attitude towards ME reporting among pharmacists. Methods:The questionnaire was developed from the literature together with outcomes from focus group discussions. It was divided into two domains which are knowledge on ME and attitude towards ME reporting. Content validity index (I-CVI), exploratory factor analysis (EFA), Cronbach alpha and intraclass correlation coefficient (ICC) to assess test-retest reliability were obtained during the validation process. Results:Overall Cronbach alpha for internal consistency was good (0.742), where subscale of the questionnaire demonstrated adequate internal consistency, with Cronbach alpha value 0.83 for knowledge and 0.70 for reporting behaviour attitude. The I-CVI showed good scores (knowledge=0.88) and (attitude=0.81), while ICC was moderately accepted with a value of 0.77. Two factors were extracted from the 16 items in EFA. Conclusion:The questionnaire to assess knowledge on ME and attitude towards ME reporting among pharmacists is valid and reliable. It demonstrates good psychometric properties.
| S-EPMC7234971 | biostudies-literature
Project description:ObjectivesTo develop and validate an instrument about nutritional knowledge and feeding practices to be used in children aged 7-11 years, based on the latest Brazilian Food Guide.MethodsReview on the subject; instrument creation; content validity with two groups of judges: first, nutritionists and, after adjustments, a multidisciplinary group (content validity index [CVI]); FACE validity; reproducibility analysis (intraclass correlation coefficient [ICC], level of agreement, and kappa [k]); internal consistency analysis (Cronbach's alpha[α]) and construct validity (Kaiser-Meyer-Olkin and exploratory factorial analysis). The sample was calculated, considering at least ten subjects for each question of the questionnaire.ResultsThere was a final sample of 453 children (53.6% girls), with a mean age of 9.45 years (SD = 1.44). The content validity showed a CVI ≥ 0.80 for relevance in 62.3% of the items for nutritionists' group and 100% of the items for the multidisciplinary group, clarity (49.4%, 91.8%), and pertinence (58.8%, 98.4%), respectively. The test-retest showed a level of agreement of 84.3% and k = 0.740 for the Knowledge dimension and ICC = 0.754 for the Food Practices dimension. The internal consistency showed α = 0.589 for the Knowledge dimension and α = 0.618 for the Food Practices dimension. For the construct validity, Kaiser-Meyer-Olkin was 0.724 and exploratory factorial analysis showed a variance of 47.01 with varimax rotation and defined five factors for the Practices Dimension.ConclusionThe Food Knowledge and Practices Questionnaire (Questionário de Conhecimento e Práticas Alimentares [QCPA]) instrument showed validity and reliability to assess nutritional knowledge and food practices in children aged 7-11 years.
| S-EPMC9432235 | biostudies-literature
Project description:ObjectiveTo translate the Leuven Knowledge Questionnaire for Congenital Heart Disease into Brazilian Portuguese and to validate its psychometric properties with parents and family caregivers of children with congenital heart disease.MethodThis was a six-step methodological study, including the translation, synthesis, back-translation, evaluation of the version translated by the committee of experts, pre-testing, and validation, for which two pilot tests were used including the think-aloud protocol. The content validity index and the frequency of socioeconomic data were calculated in a statistical programming environment.ResultsIn content validation, the instrument showed good applicability among experts, with average content validity index of 0.8-1, while kappa agreement analysis was between 0.76 to 1; both results were considered adequate for validation.ConclusionsThe results suggest reliability among the evaluators, indicating the instrument's accuracy and the possibility of using it to assess the knowledge of parents and family caregivers about congenital heart disease.
| S-EPMC9432303 | biostudies-literature
Project description:IntroductionFibromyalgia (FM) translates into a reduction in the quality of life of people who suffer from it, being a chronic disease of unknown etiology. One of the most widespread treatments includes the combination of patient education, along with other components. At the educational level, the Fibromyalgia Knowledge Questionnaire (FKQ) is a tool that assesses knowledge of fibromyalgia.ObjectiveTo obtain the translation and cultural adaptation of the FKQ questionnaire into Spanish, as well as its readability, in addition to knowing the relationship between knowledge of the disease and the level of disability.MethodIn phase one, a translation-back translation and an evaluation of the readability of the questionnaire was carried out from INFLESZ, while in phase two, the questionnaire was passed to women with FM to detect their knowledge of the disease. A total of 49 women participated, with a mean age of 54.48 years.ResultsThe Spanish version of the FKQ questionnaire was rated by the participants in all its items as "clear and understandable". The readability obtained by the questionnaire was similar to its original version, with both totals being in the "normal" range, following the INFLESZ ranges. Regarding the patients' knowledge about FM, the component in which the highest score was obtained was physical activity (80% correct), while the one that obtained the worst score was knowledge about medication (50% correct). In addition, an inverse correlation was obtained between the FKQ and the FIQ (Fibromyalgia Impact Questionnaire) (r = -0.438; p < 0.01).ConclusionsThe FKQ has been translated and culturally adapted, obtaining a correct understanding by the participants, as well as a degree of readability similar to the original questionnaire. Furthermore, it was obtained that, the lower the level of knowledge of the sick person, the greater the disability.
| S-EPMC8305758 | biostudies-literature
Project description:BackgroundA patient's knowledge of heart failure (HF) is associated with better outcomes. The more information patients have about their illness, the less likely they are to be readmitted to the hospital. Such knowledge includes the cause, symptoms, probable duration, and expected evolution of the clinical picture. In Portugal, a tool for testing patient knowledge is an unmet need. Therefore, this study aimed to adapt and test the Chronic Heart Failure Knowledge Questionnaire (KQCHF) for the Portuguese context.MethodsThis work includes three cross-sectional studies. In Study 1, subjects were divided between before and after receiving information about HF. In Study 2, participants answered the questionnaire before and after reading the brochure. In Study 3, KQCHF was applied to patients with HF. Studies 1 and 2 were carried out in the general population. Study 3 was carried out with HF outpatients. Convenience sampling was applied to participants in the three studies.ResultsIn Study 1 (n = 45), those who received information had better scores (9.2 ± 1.9) than those who did not (6.0 ± 2.3). In Study 2 (n = 21), the scores were higher after reading the brochure (10.4 ± 1.7 vs. 6.5 ± 2.9). In Study 3 (n = 169), women had better scores than men (9.1 ± 2.1 vs. 8.3 ± 2.2, overall: 8.5 ± 2.2), and knowledge was correlated with education (r = .340, p < .001) and age (r = -.170, p = .030).ConclusionThe Portuguese adaptation of KQCHF captured relevant knowledge about HF and has shown promising results for clinical and research purposes. The questionnaire can be useful in assessing HF patients' knowledge of their disease and as a basis for the implementation of general and personalised educational strategies to improve HF knowledge and, therefore, promote health literacy and self-care.
| S-EPMC10280838 | biostudies-literature
Project description:BackgroundAssessment of health beliefs and risk perception is a critical means to prevent coronary heart disease, but there are few such studies on assessment in the Chinese population. Given the demonstrated value and widespread use of the Attitudes and Beliefs about Cardiovascular Disease Risk Questionnaire (ABCD), this study was designed to translate it into Chinese, and to evaluate its reliability and validity in a Chinese population.MethodsThe Chinese version of the ABCD was created using the Beaton translation model, which included forward and backward translation. The reliability and construct validity of the Chinese ABCD were examined in a sample of 353 adults who participated in the public welfare projects of the Chinese National Center for Cardiovascular Diseases in Guilin city, Guangxi. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were performed to examine the factor structure of the Chinse ABCD. The internal consistency of the questionnaire was assessed using Cronbach's α and corrected item-total correlations.ResultsWe deleted item 7 in the knowledge dimension of the Chinese ABCD and added two items about smoking and sleep knowledge, while retaining 25 of the original items, so that it finally included 27 items. The correlations were .20-.90; the correlations between each item and the total score of the ABCD were .34-.86; and the item-level Content Validity Index (I-CVI) was .86-1.00. The results of the EFA showed that all items were close to .40, and the cumulative variance contribution rate was 63.88%. The model fit was acceptable (χ2 = 698.79, df = 243, χ2/df = 2.87, P < 0.001, SRMR = 0.06, RMSEA = 0.05, CFI = 0.96, and TLI = 0.94) according to the CFA. The Cronbach' s α of the entire questionnaire was .86, and the α of each of dimension was .65, .90, .88, and .78. The split-half reliability of the entire the ABCD was .67, and the test-retest reliability was .97 (P < 0.05). The questionnaire had good reliability and validity and was associated with sociodemographic and health-related characteristics (smoking and Body Mass Index).ConclusionThe Chinese version of the ABCD has good reliability and validity, and provides a reliable assessment tool for measuring public health beliefs about the risk of cardiovascular disease, promoting the primary prevention of coronary heart disease.
| S-EPMC9441105 | biostudies-literature
Project description:IntroductionIn phenylketonuria (PKU), a gene mutation in the phenylalanine metabolic pathway causes accumulation of phenylalanine (Phe) in blood and brain. Although early introduction of a Phe-restricted diet can prevent severe symptoms from developing, patients who are diagnosed and treated early still experience deficits in cognitive functioning indicating shortcomings of current treatment. In the search for new and/or additional treatment strategies, a specific nutrient combination (SNC) was postulated to improve brain function in PKU. In this study, a long-term dietary intervention with a low-Phe diet, a specific combination of nutrients designed to improve brain function, or both concepts together was investigated in male and female BTBR PKU and WT mice.Material & methods48 homozygous wild-types (WT, +/+) and 96 PKU BTBRPah2 (-/-) male and female mice received dietary interventions from postnatal day 31 till 10 months of age and were distributed in the following six groups: high Phe diet (WT C-HP, PKU C-HP), high Phe plus specific nutrient combination (WT SNC-HP, PKU SNC-HP), PKU low-Phe diet (PKU C-LP), and PKU low-Phe diet plus specific nutrient combination (PKU SNC- LP). Memory and motor function were tested at time points 3, 6, and 9 months after treatment initiation in the open field (OF), novel object recognition test (NOR), spatial object recognition test (SOR), and the balance beam (BB). At the end of the experiments, brain neurotransmitter concentrations were determined.ResultsIn the NOR, we found that PKU mice, despite being subjected to high Phe conditions, could master the task on all three time points when supplemented with SNC. Under low Phe conditions, PKU mice on control diet could master the NOR at all three time points, while PKU mice on the SNC supplemented diet could master the task at time points 6 and 9 months. SNC supplementation did not consistently influence the performance in the OF, SOR or BB in PKU mice. The low Phe diet was able to normalize concentrations of norepinephrine and serotonin; however, these neurotransmitters were not influenced by SNC supplementation.ConclusionThis study demonstrates that both a long-lasting low Phe diet, the diet enriched with SNC, as well as the combined diet was able to ameliorate some, but not all of these PKU-induced abnormalities. Specifically, this study is the first long-term intervention study in BTBR PKU mice that shows that SNC supplementation can specifically improve novel object recognition.
| S-EPMC6420157 | biostudies-literature
Project description:BACKGROUND: The purpose of the present study is to translate and validate the "Hip and Knee Outcomes Questionnaire", developed in English, into Spanish. The 'Hip and Knee Outcomes Questionnaire is a questionnaire planned to evaluate the impact in quality of life of any problem related to the human musculoskeletal system. 10 scientific associations developed it. METHODS: The questionnaire underwent a validated translation/retro-translation process. Patients undergoing primary knee arthroplasty, before and six months postoperative, tested the final version in Spanish. Psychometric properties of feasibility, reliability, validity and sensitivity to change were assessed. Convergent validity with SF-36 and WOMAC questionnaires was evaluated. RESULTS: 316 patients were included. Feasibility: a high number of missing items in questions 3, 4 and 5 were observed. The number of patients with a missing item was 171 (51.35%) in the preoperative visit and 139 (44.0%) at the postoperative. Internal validity: revision of coefficients in the item-rest correlation recommended removing question 6 during the preoperative visit (coefficient <0.20). Convergent validity: coefficients of correlation with WOMAC and SF-36 scales confirm the questionnaire's validity. Sensitivity to change: statistically significant differences were found between the mean scores of the first visit compared to the postoperative. CONCLUSION: The proposed translation to Spanish of the 'Hip and Knee Questionnaire' is found to be reliable, valid and sensible to changes produced at the clinical practice of patients undergoing primary knee arthroplasty. However, some changes at the completion instructions are recommended. LEVEL OF EVIDENCE: Level I. Prognostic study.
| S-EPMC4035858 | biostudies-other