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English version of the self-administered Fabry Pain Questionnaire for adult patients.

ABSTRACT: BACKGROUND:Pain is an early symptom of Fabry disease (FD) and is characterized by a unique phenotype with mainly episodic acral and triggerable burning pain. Recently, we designed and validated the first pain questionnaire for adult FD patients in an interview and a self-administered version in German: the Würzburg Fabry Pain Questionnaire (FPQ). We now report the validation of the English version of the self-administered FPQ (enFPQ). METHODS:After two forward-backward translations of the FPQ by native German and native English speakers, the enFPQ was applied at The Mark Holland Metabolic Unit, Manchester, UK for validation. Consecutive patients with genetically ascertained FD and current or previous FD pain underwent a face-to-face interview using the enFPQ. Two weeks later, patients filled in the self-administered enFPQ at home. The agreement between entries collected by supervised administration and self-administration of the enFPQ was assessed via Gwet's AC1-statistics (AC1) for nominal-scaled scores and intraclass correlation coefficient (ICC) for interval-scaled elements. RESULTS:Eighty-three FD patients underwent the face-to-face interview and 54 patients sent back a completed self-administered version of the enFPQ 2 weeks later. We found high agreement with a mean AC1-statistics of 0.725 for 55 items, and very high agreement with a mean ICC of 0.811 for 9 items. CONCLUSIONS:We provide the validated English version of the FPQ for self-administration in adult FD patients. The enFPQ collects detailed information on the individual FD pain phenotype and thus builds a solid basis for better pain classification and treatment in patients with FD.

SUBMITTER: Jovanovic A

PROVIDER: S-EPMC7576746 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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English version of the self-administered Fabry Pain Questionnaire for adult patients.

Jovanovic Ana A Klassen Philipp P Heuschmann Peter P Sommer Claudia C Roberts Mark M Üçeyler Nurcan N

Orphanet journal of rare diseases 20201020 1

<h4>Background</h4>Pain is an early symptom of Fabry disease (FD) and is characterized by a unique phenotype with mainly episodic acral and triggerable burning pain. Recently, we designed and validated the first pain questionnaire for adult FD patients in an interview and a self-administered version in German: the Würzburg Fabry Pain Questionnaire (FPQ). We now report the validation of the English version of the self-administered FPQ (enFPQ).<h4>Methods</h4>After two forward-backward translation ...[more]

PMID: 33081835

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Project description:Acceptance of chronic pain has increasingly become a significant issue in the field of pain management. Many researchers have suggested that patients with better acceptance of pain are more likely to have better functioning both in physical and psychological status. In many countries, the Chronic Pain Acceptance Questionnaire (CPAQ) and CPAQ-8 have been validated and utilized frequently to measure the pain acceptance of patients with chronic pain. However, the CPAQ and CPAQ-8 yet have not been introduced and validated in Mainland China.In this study, we aimed to translate the English version of the CPAQ into simplified Chinese, make proper cross-cultural adaptations, and validate the psychometric properties of the Chinese version of the CPAQ and the CPAQ-8.The English version of the CPAQ was first linguistically translated and cross-culturally adapted to formulate a Chinese version. Then, we recruited 224 patients from a pain clinic and every participant was asked to finish a series of questionnaires. Finally, statistical analysis was performed to test the psychometric properties of the CPAQ and the CPAQ-8.Both confirmatory factor analysis (CFA) and principal component analysis (PCA) confirmed a 2-factor structure for the CPAQ and the CPAQ-8. Nine out of 10 of the hypotheses were validated for construct validity. The overall intraclass correlation coefficient (ICC) value for the CPAQ and CPAQ-8 were 0.92 and 0.89, respectively. In addition, the Cronbach ? values for both the CPAQ and the CPAQ-8 showed excellent test-retest reliability.In conclusion, the original CPAQ was successfully developed into the Chinese version of the CPAQ and CPAQ-8 with excellent validity and reliability. The scores of the CPAQ or CPAQ-8 might be a strong predictor for the physical and psychological function of chronic pain patients. In addition, to improve the satisfaction of surgery patients, we recommend measuring patients' pain acceptance using the CPAQ or CPAQ-8 before and after the surgery. For patients with lower acceptance, psychological interventions may be more effective than treatment that simply reduces symptoms. Finally, we suggest that the Chinese version of the CPAQ and CPAQ-8 are appropriate for use in clinical settings or fundamental research in Mainland China.

Project description:BackgroundBowel symptoms are considered indicators of the presence of colorectal cancer and other bowel diseases. Self administered questionnaires that elicit information about lower bowel symptoms have not been assessed for reliability, although this has been done for upper bowel symptoms. Our aim was to develop a self administered questionnaire for eliciting the presence, nature and severity of lower bowel symptoms potentially related to colorectal cancer, and assess its reliability.MethodsImmediately before consulting a gastroenterologist or colorectal surgeon, 263 patients likely to have a colonoscopy completed the questionnaire. Reliability was assessed in two ways: by assessing agreement between patient responses and (a) responses given by the doctor at the consultation; and (b) responses given by patients two weeks later.ResultsThere was more than 75% agreement for 78% of the questions for the patient-doctor comparison and for 92% of the questions for the patient-patient comparison. Agreement for the length of time a symptom was present, its severity, duration, frequency of occurrence and whether or not medical consultation had been sought, all had agreement of greater than 70%. Over all questions, the chance corrected agreement for the patient-doctor comparison had a median kappa of 65% (which represents substantial agreement), interquartile range 57-72%. The patient-patient comparison also showed substantial agreement with a median kappa of 75%, interquartile range 68-81%.ConclusionThis self administered questionnaire about lower bowel symptoms is a useful way of eliciting details of bowel symptoms. It is a reliable instrument that is acceptable to patients and easily completed. Its use could guide the clinical consultation, allowing a more efficient, comprehensive and useful interaction, ensuring that all symptoms are assessed. It will also be a useful tool in research studies on bowel symptoms and their predictive value for colorectal cancer and other diseases. Studies assessing whether bowel symptoms predict the presence of colorectal cancer should provide estimates of the reliability of the symptom elicitation.

Project description:BACKGROUND:There is evidence to suggest that rates of hearing loss are increasing more rapidly than the capacity of traditional audiometry resources for screening. A novel innovation in tablet, self-administered portable audiometry has been proposed as a solution to this discordance. The primary objective of this study was to validate a tablet audiometer with adult patients in a clinical setting. Secondarily, word recognition with a tablet audiometer was compared against conventional audiometry. METHODS:Three distinct prospective adult cohorts underwent testing. In group 1 and group 2 testing with the automated tablet audiometer was compared to standard sound booth audiometry. In Group 1, participants' pure tone thresholds were measured with an automated tablet audiometer in a quiet clinic exam room. In Group 2, participants completed monosyllabic word recognition testing using the NU-6 word lists. In Group 3, internal reliability was tested by having participants perform two automated tablet audiometric evaluation in sequence. RESULTS:Group 1 included 40 patients mean age was 54.7?±?18.4?years old and 60% female; Group 2 included 44 participants mean age was 55.2?±?14.8?years old and 68.2% female; Group 3 included 40 participants with mean age of 39.4 + 15.9?years old and 60.5% female. In Group 1, compared to standard audiometry, 95.7% (95% CI: 92.6-98.9%) of thresholds were within 10?dB. In Group 2, comparing word recognition results, 96.2% (95% CI: 89.5-98.7%) were clinically equivalent and within a critical difference range. In Group 3, One-way Intraclass Correlation for agreement for the both left- and right-ear pure tone average was 0.98. The mean difference between repeat assessments was 0 (SD?=?2.1) in the left ear, and 0.1 (SD?=?1.1) in the right ear. CONCLUSION:Puretone audiometry and word recognition testing appears valid when performed by non-healthcare experts using a tablet audiometer outside a sound booth in a quiet environment. TRIAL REGISTRATION:ClinicalTrials.gov Identifier: NCT02761798. Registered April, 2016 < https://clinicaltrials.gov/ct2/show/NCT02761798>.

Project description:BACKGROUND: There is no validated gold-standard diagnostic support tool for LSS, and therefore an accurate diagnosis depends on clinical assessment. Assessment of the diagnostic value of the history of the patient requires an evaluation of the differences and overlap of symptoms of the radicular and cauda equina types; however, no tool is available for evaluation of the LSS category. We attempted to develop a self-administered, self-reported history questionnaire as a diagnostic support tool for LSS using a clinical epidemiological approach. The aim of the present study was to use this tool to assess the diagnostic value of the history of the patient for categorization of LSS. METHODS: The initial derivation study included 137 patients with LSS and 97 with lumbar disc herniation who successfully recovered following surgical treatment. The LSS patients were categorized into radicular and cauda equina types based on history, physical examinations, and MRI. Predictive factors for overlapping symptoms between the two types and for cauda equina symptoms in LSS were derived by univariate analysis. A self-administered, self-reported history questionnaire (SSHQ) was developed based on these findings. A prospective derivation study was then performed in a series of 115 patients with LSS who completed the SSHQ before surgery. All these patients recovered following surgical treatment. The sensitivity of the SSHQ was calculated and clinical prediction rules for LSS were developed. A validation study was subsequently performed on 250 outpatients who complained of lower back pain with or without leg symptoms. The sensitivity and specificity of the SSHQ were calculated, and the test-retest reliability over two weeks was investigated in 217 patients whose symptoms remained unchanged. RESULTS: The key predictive factors for overlapping symptoms between the two categories of LSS were age > 50, lower-extremity pain or numbness, increased pain when walking, increased pain when standing, and relief of symptoms on bending forward (odds ratio > or = 2, p < 0.05). The key predictive factors for cauda equina type symptoms were numbness around the buttocks, walking almost causes urination, a burning sensation around the buttocks, numbness in the soles of both feet, numbness in both legs, and numbness without pain (odds ratio > or = 2, p < 0.05). The sensitivity and specificity of the SSHQ were 84% and 78%, respectively, in the validation data set. The area under the receiver operating characteristic curve was 0.797 in the derivation set and 0.782 in the validation data set. In the test-retest analysis, the intraclass correlation coefficient for the first and second tests was 85%. CONCLUSION: A new self-administered, self-reported history questionnaire was developed successfully as a diagnostic support tool for LSS.

Dataset Information

English version of the self-administered Fabry Pain Questionnaire for adult patients.

Publications

English version of the self-administered Fabry Pain Questionnaire for adult patients.

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