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:BACKGROUND:The 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. METHODS:Nineteen 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. RESULTS:Median 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 ?mol/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 ?g/day (range 347-1744 ?g/day), and resulted in high blood folate concentrations. Median intake of vitamin B(12) was 7.0 ?g/day (range 0.9-15.1 ?g/day). CONCLUSIONS:The 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: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: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: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: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:BackgroundPatient education is the first step in implementing a cardiac rehabilitation (CR) program and a powerful tool for promoting behavioral changes in cardiac patients. In China, the clinical workload is so heavy that a short and reliable tool for assessing disease-related knowledge is needed for targeted patient education.ObjectiveThe aim of this study was to translate, adapt and validate the Chinese version of the Coronary Artery Disease Education Questionnaire - Short Version (CADE-Q SV).MethodsThe CADE-Q SV was translated to simplified Chinese and culturally adapted to the Chinese context. The translated version was reviewed by a committee of seven experts in cardiovascular disease, and the content validity of the questionnaire was established. The psychometric properties of the questionnaire were analyzed considering the responses of 240 CR patients. The Kuder-Richardson-20 (KR-20) coefficient and Cronbach's alpha were used to assess internal consistency. The intraclass correlation coefficient (ICC) was used to assess test-retest reliability. The criterion-related validity was evaluated by determining whether there were differences in the total scores of patients with different educational levels. Confirmatory factor analysis (CFA) was used to assess the factor structure.ResultsThree items from the original version were adapted to reflect Chinese culture. The content validity index was 0.94. The KR-20 score was 0.856. All ICC values were > 0.70. The knowledge scores of patients with different educational levels were significantly different, indicating that the criterion-related validity of the Chinese CADE-Q-SV was acceptable. CFA validated the five-factor structure of the Chinese CADE-Q-SV.ConclusionThe Chinese CADE-Q SV questionnaire has good reliability and validity. This short, efficient tool can be completed quickly, assess disease-related knowledge in cardiovascular patients and serve as a reference for individualized patient education in China. It can also be used to evaluate the effectiveness of CR-related patient education interventions.
| S-EPMC7908925 | 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
Project description:OBJECTIVE:Patient knowledge of their medicines is closely associated to a better rational use of drugs, thus achieving better health outcomes from their use. The objective of this study is to design and validate a questionnaire to assess the level of knowledge patients have about their medicines. DESIGN:(A) Questionnaire: Literature review, some qualitative techniques (expert panel, brainstorming, Delphi method) and some pilot studies. (B) Questionnaire validation. SETTING:A community pharmacy in the city of Malaga. PARTICIPANTS:Patients attending the selected pharmacy, asking for at least one medicine. MAIN MEASUREMENTS:The discriminant capacity of the items was assessed. Content and construct validity were analysed using the Spearman's Rho coefficient and Factor Analysis method. Reliability was assessed by measuring internal consistency, equivalence (inter-observer concordance) and test-retest reliability. RESULTS:The final questionnaire, with 11 items explaining the different dimensions of knowledge found, was completed by 102 patients (a response rate of 95.3%) with a mean age of 46.6 years (SD 16.70). Mean time to complete it was 4.9 min (SD 2.2). Factor analysis showed a probable structure of 4 factors explaining the 67% of the total variance. The Spearman-Brown Rho coefficient was 0.30 (p<0.05). Cronbach alpha was 0.677, Kappa's coefficient=0.99 and intra-class correlation coefficient=0.745 (95% CI: 0.49-0.87). CONCLUSIONS:The designed questionnaire is dynamic, valid and reliable, being able to measure the level of patient knowledge on the medicines they use.
| S-EPMC7022045 | biostudies-literature
Project description:There is a need for health professionals to provide parents with not only evidence-based child health websites but also instruments to evaluate them. The main aim of this research was to develop a questionnaire for measuring users' evaluation of the usability, utility, confidence, the well-child section, and the accessibility of a Spanish pediatric eHealth website for parents. We further sought to evaluate the content validity and psychometric reliability of the instrument. A content validation study by expert review was performed, and the questionnaire was pilot tested. Psychometric analyses were used to establish scales through exploratory and confirmatory factor analyses. Reliability studies were performed using Cronbach's alpha and two split-half methods. The content validation of the questionnaire by experts was considered as excellent. The pilot web survey was completed by 516 participants. The exploratory factor analysis excluded 27 of the 41 qualitative initial items. The confirmatory factor analysis of the resultant 14-item questionnaire confirmed the five initial domains detected in the exploratory confirmatory analysis. The goodness of fit for the competing models was established through fit indices and confirmed the previously established domains. Adequate internal consistency was found for each of the subscales as well as the overall scale.
| S-EPMC7215976 | biostudies-literature
Project description:Study designProspective study.PurposeWe aimed to validate the Persian version of the modified Oswestry disability questionnaire (MODQ) in patients with low back pain.Overview of literatureModified Oswestry low back pain disability questionnaire is a well-known condition-specific outcome measure that helps quantify disability in patients with lumbar syndromes.MethodsTo test the validity in a pilot study, the Persian MODQ was administered to 25 individuals with low back pain. We then enrolled 200 consecutive patients with low back pain to fill the Persian MODQ as well as the short form 36 (SF-36) questionnaire. Convergent validity of the MODQ was tested using the Spearman's correlation coefficient between the MODQ and SF-36 subscales. Intraclass correlation coefficient (ICC) and Cronbach's ? coefficient were measured to test the reliability between test and retest and internal consistency of all items, respectively.ResultsICC for individual items ranged from 0.43 to 0.80 showing good reliability and reproducibility of each individual item. Cronbach's ? coefficient was 0.69 showing good internal consistency across all 10 items of the Persian MODQ. Total MODQ score showed moderate to strong correlation with the eight subscales and the two domains of the SF-36. The highest correlation was between the MODQ and the physical functioning subscale of the SF-36 (r=-0.54, p<0.001) and the physical component domain of the SF-36 (r=-0.55, p<0.001) showing that MODQ is measuring what it is supposed to measure in terms of disability and physical function.ConclusionsPersian version of the MODQ is a valid and reliable tool for the assessment of the disability following low back pain.
| S-EPMC4843055 | biostudies-literature