Objective. Chronic constipation is characterized by difficult, infrequent, or seemingly incomplete bowel movements. The Patient Assessment of Constipation Quality of Life (PACQOL) questionnaire was developed to addres...Objective. Chronic constipation is characterized by difficult, infrequent, or seemingly incomplete bowel movements. The Patient Assessment of Constipation Quality of Life (PACQOL) questionnaire was developed to address the need for a standardized, patient-reported outcomes measure to evaluate constipation over time. Material and methods. Items for the PAC-QOL were generated from the literature, clinical experts, and patients. Following principal components and multitrait analyses, 28 items were retained forming four subscales (worries and concerns, physical discomfort, psychosocial discomfort, and satisfaction) and an overall scale. Validation studies were conducted in the United States, Europe, Canada, and Australia, to evaluate the internal consistency reliability (Cronbach’s alpha), reproducibility (Intraclass Correlation Coefficients (ICCs)), validity (analysis of variance models), and responsiveness (effect size) of the PAC-QOL scales. Results. The PAC-QOL scales were internally consistent (Cronbach’s alpha >0.80) and reproducible (ICCs > 0.70, except for the satisfaction subscale ICC = 0.66). PAC-QOL scale scores were significantly associated with abdominal pain (p < 0.001) and constipation severity (p < 0.05). Effect sizes in patients reporting improvements in constipation over a 6-week period were moderate to large, with subscale effect sizes ranging from 0.76 to 3.41 and the overall scale effect size = 1.77. Similar findings were observed in validation studies conducted in Europe, Canada, and Australia. Conclusions. The PAC-QOL is a brief but comprehensive assessment of the burden of constipation on patients’ everyday functioning and well-being. Multinational studies demonstrate that the PAC-QOL is internally consistent, reproducible, valid, and responsive to improvements over time.展开更多
Background and Aim: Long-term respiratory, gastrointestinal, and vertebral sequelae are common after repair of congenital diaphragmatic defects (CDDs). The aim of this study was to assess the effect of these sequelae ...Background and Aim: Long-term respiratory, gastrointestinal, and vertebral sequelae are common after repair of congenital diaphragmatic defects (CDDs). The aim of this study was to assess the effect of these sequelae on the health-related quality of life (HRQoL) of adult survivors after CDD repair. Materials and Methods: A questionnaire, including 36-Item Health Survey Form (SF-36), 36-item Gastrointestinal Quality of Life Index (GIQLI), 55-item Psychosocial Survey, 9-item survey for Respiratory Symptoms-Related Quality of Life Index, and a symptoms query, was sent to 94 adult survivors of CDD and to 400 healthy control subjects. One SD lower than the age-adjusted national average in the 36-Item Health Survey Form score for physical or mental health was considered as low HRQoL. Results: Sixty-nine patients with CDD (72% ) and 162 (41% ) control subjects returned the questionnaire. The initial presentation was critical in less than 10% of patients with CDD. Forty-five patients with diaphragmatic hernia had primary closure; in 1 patient with diaphragmatic hernia, a patch was used. Twenty-four patients had plication of diaphragmatic eventration. The incidence of gastroesophageal reflux (20% vs 2% ), recurrent intestinal obstruction (7% vs 0% ), and recurrent abdominal pain (12% vs 2% ) was significantly higher in patients with CDD than in control subjects, whereas no difference in the incidence of respiratory, musculoskeletal, or other health problems not associated with CDD was found. Scores in GIQLI, Psychosocial Survey, and Respiratory Symptoms-Related Quality of Life Index did not differ between patients with CDD and control subjects. Health-related quality of life was low in 17 (25% ) of 69 patients with CDD, which exceeded 1.5 times the expected value. There was no correlation between the type or severity of the primary defect and HRQoL at the time of the study. Conclusion: Most adults with repaired CDD have good or satisfactory HRQoL. Congenital diaphragmatic defect-associated symptoms with or without acquired diseases significantly impair HRQoL in one fourth of the patients.展开更多
Objectives This study was undertaken to evaluate changes in fibroid s pecific s ymptom severity and health-related quality of life (HRQOL) after uterine artery embolization (UAE) and to consider the impact of these ch...Objectives This study was undertaken to evaluate changes in fibroid s pecific s ymptom severity and health-related quality of life (HRQOL) after uterine artery embolization (UAE) and to consider the impact of these changes on satisfaction with the procedure. Study design A validated,fibroid specific, symptom, and HRQO L questionnaire was mailed to 80 women who had undergone UAE from 1998 through 2 002. Pre-and postprocedure symptom severity and HRQOL scores were obtained. The primary outcome measure was change in fibroid symptoms and HRQOL after UAE. Sec ondary outcomes included objective measures of patient satisfaction, and the dec rease in uterine volume after UAE. Results Questionnaires were completed by 64 w omen (80.0%) at a mean of 32.1 months from UAE (range: 57.5-6months). After UA E,mean uterine volume decreased by 26.3%(95%CI 19.6-33.0), and 17 of 79 women (21.5%) underwent an additional procedure after a mean of 18.6 months. Symptom severity scores decreased by a mean of 35.2%(95%CI 29.3-41.1) and HRQOL scor es increased by a mean of 35.7%(95%CI 28.9-42.4). Satisfaction with UAE was c orrelated with the change in symptom severity and HRQL scores (P < .0001 and P=. 0004, respectively) and the decrease in uterine volume after UAE (P=.0196). Conc lusion Women who undergo UAE have a significant decrease in symptom severity and increase in HRQOL, associated with high levels of satisfaction with the procedu re, even when subsequent therapies are pursued.展开更多
Objective: To review health-related quality of life (QOL) and associated issues and to describe a study investigating “ Child Health Questionnaire” (CHQ) scores in relationship to newborn screening (NBS) for cystic ...Objective: To review health-related quality of life (QOL) and associated issues and to describe a study investigating “ Child Health Questionnaire” (CHQ) scores in relationship to newborn screening (NBS) for cystic fibrosis (CF) and markers of disease severity. Methods: A total of 36 patients from 10-15.5 years old who were enrolled in the screened or control group of the Wisconsin CF Neonatal Screening Project completed the CHQ. Scale scores comprised the dependent variables. Independent variables included study group and measures of disease severity. Analyses included Fisher’ s exact, 2-sample Wilcoxon, and t tests. Results: QOL did not differ significantly between the screened and control groups for any of the scales. None of the comparisons of CHQ scale scores across measures of disease severity were significant in this small sample, but the CHQ and power were limiting. Conclusions: Our results did not demonstrate a benefit of CF NBS on QOL; however, the CHQ may not be adequately sensitive to QOL in children with CF with disease severity comparable to our sample. The Cystic Fibrosis Questionnaire, a recently validated CF-specific QOL measure for pediatric samples, is likely to provide a more informative evaluation of the effects of CF NBS on patients’ QOL.展开更多
Background:Few studies have paid attention to the effects of treatment interventions on the psychosocial consequences of vitiligo. Objectives:To quantify and analyse the psychosocial benefit of the use of camouflage i...Background:Few studies have paid attention to the effects of treatment interventions on the psychosocial consequences of vitiligo. Objectives:To quantify and analyse the psychosocial benefit of the use of camouflage in vitiligo patients. Patients and Methods:78 vitiligo patients completed the Dermatology Life Quality Index (DLQI) and an adapted stigmatization questionnaire, and 62 of them completed the DLQI after at least a 1-month use of camouflage. Results:The initial mean overall DLQI score (n=78) is 6.9 (SD 5.6). The mean global stigmatization score is 38%. Disease extent and disease severity are strong predictors of the DLQI (P < 0.0001). Vitiligo on the face/head/neck substantially affects the DLQI, independently of degree of involvement. The mean DLQI score before and after use of camouflage (n=62) is 7.3 (SD 5.6) and 5.9 (SD 5.2; P=0.006). Mainly the high-scoring items ‘feelings of embarrassment and self consciousness’and ‘choice of clothing’improve. Predictors of improvement are higher DLQI scores (P=0.0005) and higher total severity scores (P=0.03). Conclusions:Camouflage can be recommended, particularly in patients with higher DLQI scores or self-assessed disease severity. Patients with minor involvement of the face benefit from camouflage.展开更多
文摘Objective. Chronic constipation is characterized by difficult, infrequent, or seemingly incomplete bowel movements. The Patient Assessment of Constipation Quality of Life (PACQOL) questionnaire was developed to address the need for a standardized, patient-reported outcomes measure to evaluate constipation over time. Material and methods. Items for the PAC-QOL were generated from the literature, clinical experts, and patients. Following principal components and multitrait analyses, 28 items were retained forming four subscales (worries and concerns, physical discomfort, psychosocial discomfort, and satisfaction) and an overall scale. Validation studies were conducted in the United States, Europe, Canada, and Australia, to evaluate the internal consistency reliability (Cronbach’s alpha), reproducibility (Intraclass Correlation Coefficients (ICCs)), validity (analysis of variance models), and responsiveness (effect size) of the PAC-QOL scales. Results. The PAC-QOL scales were internally consistent (Cronbach’s alpha >0.80) and reproducible (ICCs > 0.70, except for the satisfaction subscale ICC = 0.66). PAC-QOL scale scores were significantly associated with abdominal pain (p < 0.001) and constipation severity (p < 0.05). Effect sizes in patients reporting improvements in constipation over a 6-week period were moderate to large, with subscale effect sizes ranging from 0.76 to 3.41 and the overall scale effect size = 1.77. Similar findings were observed in validation studies conducted in Europe, Canada, and Australia. Conclusions. The PAC-QOL is a brief but comprehensive assessment of the burden of constipation on patients’ everyday functioning and well-being. Multinational studies demonstrate that the PAC-QOL is internally consistent, reproducible, valid, and responsive to improvements over time.
文摘Background and Aim: Long-term respiratory, gastrointestinal, and vertebral sequelae are common after repair of congenital diaphragmatic defects (CDDs). The aim of this study was to assess the effect of these sequelae on the health-related quality of life (HRQoL) of adult survivors after CDD repair. Materials and Methods: A questionnaire, including 36-Item Health Survey Form (SF-36), 36-item Gastrointestinal Quality of Life Index (GIQLI), 55-item Psychosocial Survey, 9-item survey for Respiratory Symptoms-Related Quality of Life Index, and a symptoms query, was sent to 94 adult survivors of CDD and to 400 healthy control subjects. One SD lower than the age-adjusted national average in the 36-Item Health Survey Form score for physical or mental health was considered as low HRQoL. Results: Sixty-nine patients with CDD (72% ) and 162 (41% ) control subjects returned the questionnaire. The initial presentation was critical in less than 10% of patients with CDD. Forty-five patients with diaphragmatic hernia had primary closure; in 1 patient with diaphragmatic hernia, a patch was used. Twenty-four patients had plication of diaphragmatic eventration. The incidence of gastroesophageal reflux (20% vs 2% ), recurrent intestinal obstruction (7% vs 0% ), and recurrent abdominal pain (12% vs 2% ) was significantly higher in patients with CDD than in control subjects, whereas no difference in the incidence of respiratory, musculoskeletal, or other health problems not associated with CDD was found. Scores in GIQLI, Psychosocial Survey, and Respiratory Symptoms-Related Quality of Life Index did not differ between patients with CDD and control subjects. Health-related quality of life was low in 17 (25% ) of 69 patients with CDD, which exceeded 1.5 times the expected value. There was no correlation between the type or severity of the primary defect and HRQoL at the time of the study. Conclusion: Most adults with repaired CDD have good or satisfactory HRQoL. Congenital diaphragmatic defect-associated symptoms with or without acquired diseases significantly impair HRQoL in one fourth of the patients.
文摘Objectives This study was undertaken to evaluate changes in fibroid s pecific s ymptom severity and health-related quality of life (HRQOL) after uterine artery embolization (UAE) and to consider the impact of these changes on satisfaction with the procedure. Study design A validated,fibroid specific, symptom, and HRQO L questionnaire was mailed to 80 women who had undergone UAE from 1998 through 2 002. Pre-and postprocedure symptom severity and HRQOL scores were obtained. The primary outcome measure was change in fibroid symptoms and HRQOL after UAE. Sec ondary outcomes included objective measures of patient satisfaction, and the dec rease in uterine volume after UAE. Results Questionnaires were completed by 64 w omen (80.0%) at a mean of 32.1 months from UAE (range: 57.5-6months). After UA E,mean uterine volume decreased by 26.3%(95%CI 19.6-33.0), and 17 of 79 women (21.5%) underwent an additional procedure after a mean of 18.6 months. Symptom severity scores decreased by a mean of 35.2%(95%CI 29.3-41.1) and HRQOL scor es increased by a mean of 35.7%(95%CI 28.9-42.4). Satisfaction with UAE was c orrelated with the change in symptom severity and HRQL scores (P < .0001 and P=. 0004, respectively) and the decrease in uterine volume after UAE (P=.0196). Conc lusion Women who undergo UAE have a significant decrease in symptom severity and increase in HRQOL, associated with high levels of satisfaction with the procedu re, even when subsequent therapies are pursued.
文摘Objective: To review health-related quality of life (QOL) and associated issues and to describe a study investigating “ Child Health Questionnaire” (CHQ) scores in relationship to newborn screening (NBS) for cystic fibrosis (CF) and markers of disease severity. Methods: A total of 36 patients from 10-15.5 years old who were enrolled in the screened or control group of the Wisconsin CF Neonatal Screening Project completed the CHQ. Scale scores comprised the dependent variables. Independent variables included study group and measures of disease severity. Analyses included Fisher’ s exact, 2-sample Wilcoxon, and t tests. Results: QOL did not differ significantly between the screened and control groups for any of the scales. None of the comparisons of CHQ scale scores across measures of disease severity were significant in this small sample, but the CHQ and power were limiting. Conclusions: Our results did not demonstrate a benefit of CF NBS on QOL; however, the CHQ may not be adequately sensitive to QOL in children with CF with disease severity comparable to our sample. The Cystic Fibrosis Questionnaire, a recently validated CF-specific QOL measure for pediatric samples, is likely to provide a more informative evaluation of the effects of CF NBS on patients’ QOL.
文摘Background:Few studies have paid attention to the effects of treatment interventions on the psychosocial consequences of vitiligo. Objectives:To quantify and analyse the psychosocial benefit of the use of camouflage in vitiligo patients. Patients and Methods:78 vitiligo patients completed the Dermatology Life Quality Index (DLQI) and an adapted stigmatization questionnaire, and 62 of them completed the DLQI after at least a 1-month use of camouflage. Results:The initial mean overall DLQI score (n=78) is 6.9 (SD 5.6). The mean global stigmatization score is 38%. Disease extent and disease severity are strong predictors of the DLQI (P < 0.0001). Vitiligo on the face/head/neck substantially affects the DLQI, independently of degree of involvement. The mean DLQI score before and after use of camouflage (n=62) is 7.3 (SD 5.6) and 5.9 (SD 5.2; P=0.006). Mainly the high-scoring items ‘feelings of embarrassment and self consciousness’and ‘choice of clothing’improve. Predictors of improvement are higher DLQI scores (P=0.0005) and higher total severity scores (P=0.03). Conclusions:Camouflage can be recommended, particularly in patients with higher DLQI scores or self-assessed disease severity. Patients with minor involvement of the face benefit from camouflage.
