Related Quality Of Life Instrument Research Articles

The reliability and validity of the isixhosa version of the euroqol toddler and infant populations (EQ-TIPS) health related quality of life instrument.

Considering the high burden of disease in young children measurement of Health-Related Quality of Life is needed to evaluate the burden of morbidity. This study aims to report on the validity and reliability of the isiXhosa EuroQol Toddler and Infant Populations (EQ-TIPS) measure for South Africa. A sample of 181 caregivers of children 0-36 months were recruited from a hospital in-patient (inpt) and outpatient (outpt) facility and crèches. The EQ-TIPS, Ages and Stages Questionnaire (ASQ), Faces, Leg, Activity, Cry, Consolability (FLACC) and dietary information were administered at baseline. EQ-TIPS was administered one week later in crèche children for test-retest reliability. Known groups showed significant differences for pain (X2=37.21, p<0.001), and EQ-TIPS level sum score (KWH=25.9, p<0.001) between health groups. The Visual Analogue Scale was unable to discriminate general health between groups (KW-H=3.92, p=0.141). Concurrent validity was weak to moderate and significant for all dimensions hypothesised to correlate. There was significant fair to moderate test-retest reliability for EQ-TIPS dimensions of movement, play, pain and eating. The isiXhosa EQ-TIPS is valid and reliable for very young children in South Africa and we suggest that it be included in the assessment of children with health conditions within this context.

Routes to diagnosis of Fabry disease according to patient age and geographic distribution

Health related quality of life is important in bladder cancer care and clinical decision making because patients must choose between diverse treatment modalities with unique morbidities. A patient reported outcome measure of overall health related quality of life for bladder cancer regardless of disease severity and treatment could benefit clinical care and research.Prospective questionnaire development was completed in 3 parts. In study 1 the BUSS (Bladder Utility Symptom Scale) questions were created by experts using a conceptual framework of bladder cancer health related quality of life generated through patient focus groups. In study 2 patients with bladder cancer, including those treated with surgery, radiation and chemotherapy, completed the BUSS and 5 health related quality of life instruments at baseline and 4 weeks to assess validity and test-retest reliability. External validity was then explored in study 3 by administering the BUSS to 578 patients online and at clinics. Construct validity was assessed by whole and subscale Spearman rank correlations, and by comparisons of BUSS scores across known groups.The BUSS had high whole scale correlation with the FACT-Bl (Functional Assessment of Cancer Therapy-Bladder) (rs = 0.82, p <0.0001) and substantial to high subscale correlations with the EQ-5D™-3L (EuroQol 5 Dimensions Questionnaire-3 Levels) (eg emotional well-being rs = 0.69, p <0.0001). BUSS scores were lower in patients with comorbidity and advanced disease. Cognitive debriefing and the 94% completion rate suggested good comprehensibility. There was excellent test-retest reliability (ICC = 0.79). Limitations included an extended time from diagnosis in many patients.The BUSS is a reliable and valid patient reported outcome instrument for health related quality of life in all patients with bladder cancer regardless of the treatment received or the stage of disease.

P6527Patients discharged on the same day following elective PCI report equal satisfaction using health related quality of life instruments as compared to usual care: results from a randomized trial

Abstract Background Earlier observations in the era of femoral procedures using warfarin as the anticoagulant agent have shown safety following same day discharge after elective percutaneous coronary intervention (PCI) for stable coronary artery disease (CAD). Procedures have evolved with most European centres adopting radial procedures with corresponding improvement in technique and equipment. Adoption of “radial lounges” has improved and simplified the observation routines with early ambulation. Antiplatelet therapy has also become more efficacious. The safety of same day discharge has been demonstrated. The economic benefit of such a strategy is significant with reported cost reductions of approximately 50%. Patient reported satisfaction is also shown to be comparable to standard care. The current bed availability in health care facilities has made it a necessity to explore measures to reduce bed occupancy rates. Reduction in bed occupancy can further permit health personell to focus on other duties and obligations in wards with patients requiring hospitalization. Early discharge may cause anxiety and dissatisfaction among patients. Purpose The aim of our study was to evaluate safety and patient satisfaction of same discharge following uncomplicated elective radial access PCI. Methods Randomized controlled single center study. Eligible patients scheduled for elective PCI with radial access were prescreened following predefined inclusion and exclusion criteria. Health related quality of life instruments (HRQOL), Seattle Angina Questionnaire (SAQ), Short form 36 (SF-36) and Hospital Anxiety and Depression Scale (HADS) were completed by the patients and received at base line and at 30 days post-procedure. All same day discharged patients were contacted by phone by a specialized study nurse the day after the procedure. Results 517 patients were screened between November 2015 and November 2018 and 82 patients with mean age of 65 years were block randomized post-procedure. 38 patients were randomized to same day discharge after 6 hours of observation and 44 patients to standard care group which necessitated an overnight hospitalization. 11 female patients and 71 male patients were included. No adverse events were registered in either group. No significant difference between groups were observed in the SAQ (treatment satisfaction score p=0.48, angina frequency scale p=0.58), SF-36 (SF vitality p=0.93) or HADS (HADS anxiety + depression p=0.15). Changes of HADS score Conclusions Discharge on the same day following uncomplicated PCI for stable angina is safe and patient health related quality of life instruments confirm that patients are equally satisfied with this new care strategy when compared to usual care. Acknowledgement/Funding Stavanger University Hospital

Health related quality of life instrument for preschool aged children in Sri Lanka: validation study

Background and Objectives Health related quality of life of children encompasses the clinical status and the perception of health. The aim of the study was to adapt and validate TAPQOL health related quality of life instrument for children in the age group of 3 to 4 years in Sri Lanka. Methods English TAPQOL was adapted to Sinhala language using modified Delphi technique. A community based cross-sectional descriptive study was conducted among 492 children in the age range of 3 to 4 years in Colombo district. Multistage cluster sampling method was used to select children. Mothers of children were interviewed using a structured questionnaire which included the adapted tool. Factor extraction, reliability and discriminant validity were tested in the analysis. Results Response rate was 94.9% (n=467). In the factor extraction, 44 items were extracted and arranged to 12 subscales. Subscales represented different dimensions of health. All subscales had less than 2% of missing values indicating high acceptability. Cronbach’s alpha was more than 0.7 in eleven subscales. High correlations were observed for test-retest reliability for responses 2 weeks apart. The instrument showed satisfactory discriminant validity with preterm born children obtaining low scores in eleven subscales compared to term born group. Conclusions and recommendations TAPQOL questionnaire could be used in the community setting for preschool aged children to assess health related quality of life.

The Bladder Utility Symptom Scale: A Novel Patient Reported Outcome Instrument for Bladder Cancer

Health related quality of life is important in bladder cancer care and clinical decision making because patients must choose between diverse treatment modalities with unique morbidities. A patient reported outcome measure of overall health related quality of life for bladder cancer regardless of disease severity and treatment could benefit clinical care and research. Prospective questionnaire development was completed in 3 parts. In study 1 the BUSS (Bladder Utility Symptom Scale) questions were created by experts using a conceptual framework of bladder cancer health related quality of life generated through patient focus groups. In study 2 patients with bladder cancer, including those treated with surgery, radiation and chemotherapy, completed the BUSS and 5 health related quality of life instruments at baseline and 4 weeks to assess validity and test-retest reliability. External validity was then explored in study 3 by administering the BUSS to 578 patients online and at clinics. Construct validity was assessed by whole and subscale Spearman rank correlations, and by comparisons of BUSS scores across known groups. The BUSS had high whole scale correlation with the FACT-Bl (Functional Assessment of Cancer Therapy-Bladder) (rs = 0.82, p <0.0001) and substantial to high subscale correlations with the EQ-5D™-3L (EuroQol 5 Dimensions Questionnaire-3 Levels) (eg emotional well-being rs = 0.69, p<0.0001). BUSS scores were lower in patients with comorbidity and advanced disease. Cognitive debriefing and the 94% completion rate suggested good comprehensibility. There was excellent test-retest reliability (ICC = 0.79). Limitations included an extended time from diagnosis in many patients. The BUSS is a reliable and valid patient reported outcome instrument for health related quality of life in all patients with bladder cancer regardless of the treatment received or the stage of disease.

Pain in amaXhosa women living with HIV/AIDS: a cross-sectional study of ambulant outpatients

BackgroundPain is one of the most commonly reported symptoms in people living with HIV/AIDS, whether or not they are receiving anti-retroviral therapy. A recent systematic review identified a paucity of studies exploring pain in women in low and middle income countries. The prevalence and characteristics of pain in women living with HIV/AIDS may differ from that of men as many chronic pain conditions are more prevalent in women. The aims of this study were to establish pain prevalence, characteristics and management in amaXhosa women living with HIV/AIDS. In addition, we aimed to identify whether there were associations between pain in this population and the psychosocial factors of employment, education, self-efficacy, depression, post-traumatic stress disorder, health related quality of life and childhood trauma.MethodsA cross-sectional study of 229 women who had undergone HIV testing and were registered patients at a community health centre was conducted. Data were collected by interview with a demographic questionnaire, the Brief Pain Inventory-Xhosa, Childhood Trauma Questionnaire–Xhosa, Harvard Trauma Questionnaire–Xhosa for PTSD, Self-Efficacy for Managing Chronic Disease 6-Item Scale-Xhosa; the EQ-5D health related quality of life instrument, and the Beck Depression Inventory.Results170 of the women had pain, a prevalence rate of 74.24% (95%CI 68.2 – 79.47%). The women reported significant pain with pain severity of 5.06 ± 1.57 and pain interference of 6.39 ± 1.96 out of 10. Only two women were receiving adequate pain management according to the pain management index. Participants reported a mean of 2.42 ± 1.21 different anatomical sites of pain. There were more unemployed participants in the group with pain and they had significantly fewer years of schooling. Those with pain had lower self-efficacy; health related quality of life and increased depression and PTSD symptom severity.ConclusionThis study highlights that pain is a common problem for amaXhosa women living with HIV/AIDS. These data emphasise the need to prioritise pain assessment and management in amaXhosa women living with HIV/AIDS. Routinely assessing for the presence of pain in women with HIV/AIDS has the potential to improve pain management and minimise the impact of pain on function.

The Health Related Quality of Life Is Maintained Following Treatment of Indolent Non-Hodgkin's Lymphoma Patients with the Novel Effective Antibody Radionuclide Conjugate 177lu-Satetraxetan-Lilotomab

Betalutin (177Lu-satetraxetan-lilotomab) is an antibody radionuclide conjugate (ARC) in development for the treatment of Non-Hodgkin's lymphoma (NHL). The FACT-Lym is a validated health related quality of life instrument specifically designed to assess lymphoma patients. This questionnaire has been used previously to demonstrate significant reductions in the quality of life of patients undergoing treatment, likely as a result of treatment related toxicities (Hlubocky FJ, et al, Lymphoma 2013).MethodsPatients with relapsed incurable NHL of follicular grade I-IIIA, marginal zone, mantle cell, lymphoplasmacytic and small lymphocytic subtypes who had received at least one prior treatment regimen were eligible for enrolment. All patients received a single dose of 15 MBq/kg of 177Lu-satetraxetan-lilotomab.The FACT-Lym instrument used in the study has 42 questions grouped into 5 subscales (physical, social/family, emotional and functional well-being and additional concerns). Questionnaires were completed by all subjects in the phase 2 stage of the study during screening, at month 3 and month 12. Responses were categorised on a 5-point Likert scale from "0- not at all" to "4-very much" with a higher score indicating a better quality of life. The analysis is conducted as part of a protocol specified interim analysis of efficacy, safety and quality of life.ResultsA total of 36 patients have been enrolled into this phase 1/2 study of which 15 patients who have undergone treatment in the phase 2 part are included in the current analysis. The median age of the patients was 68 years and the median number of prior regimens was 2 (range: 1-9). All 15 subjects have completed the screening assessment and 7 patients have completed the 3 month assessment, data from all subjects at both screening and the month 3 assessment will be presented at the annual meeting. To date 907 responses to questions have been collected including 622 questions at screening and 285 responses at 3 months post-treatment.At enrolment patients overall had a good health-related quality of life with a median baseline score of 121 and this was similar at 3 months post-treatment (median score: 132, p-value: 0.558). This maintenance of the patients quality of life was achieved while 5/7 patients (71%) showed a complete or partial response to treatment. Of the 7 patients who have so far completed the month 3 assessment, 3 had grade 3 thrombocytopenia or neutropenia (none had grade 4), the quality of life assessment of these patients (median score: 158) was similar to or higher than the 4 patients who did not have grade 3 thrombocytopenia/neutropenia (median score: 110). This indicates no negative impact on the health related quality of life when patients experienced haematological side effects associated with 177Lu-satetraxetan-lilotomab. When the 3-month assessment has been completed by all patients a subscale analysis and a correlation with ECOG performance status will be performed.ConclusionThe health related quality of life as measured by the validated FACT-Lym questionnaire was maintained following treatment with Betalutin, while also achieving a durable tumour response in a significant proportion of the patients assessed. The treatment related hematological side effects experienced by patients were modest and appeared not to have a negative effect on the quality of life. Further analysis is required to confirm these findings when the 3 month assessment has been completed by all patients. DisclosuresKolstad:Nordic Nanovector: Other: Membership of Scientific Advisory Board. Dahle:Nordic Nanovector ASA: Employment, Equity Ownership. Baylor Curtis:Nordic Nanovector: Employment. Østengen:Nordic Nanovector: Employment. Turner:Nordic Nanovector: Employment. Hartvig Larsen:Nordic nanovector: Equity Ownership. Holte:Amgen: Research Funding; Mundipharma: Research Funding.

English

Abstract The number of patients requiring arthroplasty increases annually. Joint replacement surgery can improve a patient's (QOL) quality of life. The effectiveness of this care from a patient's own perspective assessed by patient reported outcome measures is just as important as the clinical measures. The aim of our study was to evaluate patients' satisfaction following total joint replacement procedures. A cross-sectional study was performed in a major regional hospital, (Port-of-Spain General Hospital, Trinidad). Between September 1(st) 2013 and December 31(st) 2014, Seventy-three patients were enrolled in the study. Two groups were created: a pre-operative group (with thirty-nine patients) and a post- operative group (of thirty-four patients). The postoperative group of patients received either total hip replacement or total knee replacement surgery from at least three months post procedure. The main outcome measures reported were: (i) orthopaedic patient reported outcome measures, oxford hip and knee scores. (ii) health related quality of life instrument, short form 12 (SF12) for mental and physical components of health gained (MCS and PCS). (iii) visual analogue scores to assess current pain. (iv). Patient's satisfaction levels with peri-operative management. (v) Fulfillment of patients' expectations with respect to pain, mobility and independence. The pre-operative group had a mean oxford hip score (OHS) score of 18.71, standard deviation (SD) 10.09. The postoperative group had a statistically significant higher level of functionality in terms of a mean Oxford hip score (OHS) 41.45, standard deviation (SD) 7.42. The pre-operative group had more disability (lower function) in terms of a mean oxford knee score (OKS) of 15.52, SD 7.10. The post- operative group's mean oxford knee score (OKS) was 37.27, SD 7.32.With respect to the short form 12 (SF12) quality of life assessment tool, the difference in mean PCS between groups was significant, pre op 28.57 (SD 7.52), post op 40.12.27 (SD 11.16). The difference in mean MCS between groups was also significant, pre op 48.76 (SD 9.02), post op 53.76 (SD 6.77). The difference in mean pain scores (VAS) between groups was significant, pre-op eight (SD 1.86), post-op 1.42 (SD 2.19). Postoperative patients were generally satisfied with their peri-operative management. Patient expectations were met in terms of pain, mobility and independence (92.31%, 94.87% and 94.87%, respectively). Although multiple factors impact on patient satisfaction with respect to TJR surgery, statistically significant results showed increased function (improved Oxford scores), decreased pain (VAS) and general improvement in mental and physical health gained (SF12) between independent pre and post- operative groups. Clinically significant results indicate that postoperative patients were satisfied with peri-operative management and fulfillment of ex.

Validity and reliability of EQ-5D-3L for breast cancer patients in Korea.

BackgroundRecently, breast cancer incidence and prevalence has been increasing. Patients' health related quality of life is important considerations in the treatment of breast cancer. The EQ-5D-3L is one of most popular instruments to measure health related quality of life. This study was aimed to evaluate the validity and reliability of EQ-5D-3L in post-operative breast cancer patients from Korea.MethodsA total of 827 patients visiting the ambulatory cancer center of 1 tertiary hospital after breast cancer surgery self-administered the EQ-5D-3L and Functional Assessment of Cancer Therapy-Breast Cancer (FACT-B). We evaluated known-group validity using differences in the EQ-5D-3L index and EQ-VAS score according to demographic and clinical data. The discriminatory ability of the EQ-5D-3L was determined by comparing the mean FACT-B subscale scores between subjects with no problems and subjects with moderate or severe problems in each EQ-5D-3L dimension. Construct validity was evaluated by Pearson correlation coefficients among the EQ-5D-3L index and FACT-B subscales, respectively. Reliability was assessed in terms of test-retest reliability using Cohen’s kappa value and intra-class correlation coefficient (ICC).ResultsThe EQ-5D-3L index and EQ-VAS score were higher in the educated, current radiotherapy and unmarried groups. The correlation of EQ-5D-3L index and subscales for the FACT-B was highest in physical well-being (r = 0.553) and lowest in social well-being (r = 0.199). For reliability, the Kappa values’ range was from 0.32 to 0.70, and ICCs of the EQ-5D-3L index and EQ-VAS scores were 0.70 and 0.48, respectively.ConclusionsThis study indicated that the EQ-5D-3L could be a valid health related quality of life instrument for postoperative breast cancer patients.

PMH51 - Psychometric Evaluation of disease specific Health related Quality of Life Instruments in Eating Disorders

PMH51 - Psychometric Evaluation of disease specific Health related Quality of Life Instruments in Eating Disorders

Rhinosinusitis in secondary school children-part 1: pilot study of the MSNOT-20 Young Person Questionnaire (MSYPQ).

The SNOT-20 questionnaire, a valid disease related quality of life instrument for rhinosinusitis, was modified for use in secondary school children and became the Modified Sino Nasal Outcome Test -20 Young Person Questionnaire, MSYPQ. MSYPQ was evaluated in a pilot study of disease (rhinosinusitis) and non-disease according to criteria in the European Position Paper on Rhinosinusitis and Nasal polyposis (EPOS). Those children who were suffering from rhinosinusitis according to the EPOS criteria showed significantly high scores on MSYPQ, whereas those who did not have rhinosinusitis had very low to zero scores on the MSYPQ. This pilot study confirmed that the MSYPQ recognises rhinosinusitis symptoms in the 11-16 year age group with its effect on quality of life and is a suitable instrument to investigate the prevalence and impact of this problem in young people.

Development and Validation of the Pediatric Liver Transplantation Quality of Life: A Disease-Specific Quality of Life Measure for Pediatric Liver Transplant Recipients

To develop and validate a Pediatric Liver Transplantation Quality of Life (PeLTQL) questionnaire via an international multicenter collaboration. Item generation with 146 child and/or parent interviews (92 pediatric liver transplantation [LT] recipients) and 3 focus groups generated over 300 items. An item reduction questionnaire with 76 questions was completed by 320 participants (212 pediatric LT recipients). Frequency-importance product ranking, questionnaire formatting, and pre-testing resulted in a 26-item PeLTQL questionnaire. Factor analysis identified 3 domains: future health, coping and adjustment, and social-emotional. The validation phase was completed by 133 (46% male) LT recipients (aged 8-18 years). Internal consistency (Cronbach α = 0.86) and test-retest reliability (intraclass correlation coefficient = 0.85) were excellent. Mean patient PeLTQL score was 69.54 ± 13.06. Construct validity with validated tools identified significant correlations between mean PeLTQL scores and (1) Pediatric Quality of Life Inventory generic (r = 0.64, P < .001); (2) Pediatric Quality of Life Inventory transplant (r = 0.73, P < .001); and (3) Screen for Child Anxiety Related Disorders (r = -0.57, P < .001) scores. Only 17/3458 (0.5%) questions were left blank. A Flesch-Kincaid grade level of 5.4 was calculated as a measure of the PeLTQL readability statistic. The PeLTQL is a valid and reliable novel 26-item disease-specific health related quality of life instrument for LT recipients aged 8-18 years. Low PeLTQL scores can identify patients at risk for childhood anxiety and depression. The tool is now ready for broad use in both clinical practice and clinical interventional trials.

Caregiver's concerns-quality of life scale (CC-QoLS): development and evaluation of psychometric properties.

We have developed a Caregiver's Concerns-Quality of Life Scale (CC-QoLS) for adults with intellectual disabilities (ID) who exhibit aggressive behaviour. The CC-QoLS is a brief (8 items in each subscale, CC and QoL respectively) proxy measure completed by caregivers. This is a specific health related quality of life instrument (HRQoL) combined with measures of caregiver's concerns for use as an outcome measure to assess clinical and cost effectiveness of interventions for aggression in adults with ID. The CC-QoLS was found to have good face validity and very good test-retest reliability with an ICC of 0.81 for CC (range 0.46-0.83 across items) and 0.80 for QoL (range 0.65-0.81 across items). Similarly, the scale had good inter-rater reliability with an ICC of 0.67 for CC (range 0.31-0.63 across items) and 0.63 for QoL (range 0.31-0.65 across items). Internal consistency for each subscale was also good (Cronbach's alpha was 0.85 for CC and 0.80 for QoL; Split-half Spearman-Brown was 0.81 for CC and 0.70 for QoL). Furthermore, the scale showed good concurrent validity with measures of severity of aggressive behaviour, namely Modified Overt Aggression Scale (MOAS) (CC: r=0.4; p≤0.01 and QoL: r=-0.2; p≤0.05) and Aberrant Behavior Checklist-Irritability subscale (ABC-I) (CC: r=0.5; p≤0.01 and QoL: r=-0.02; p≤0.05) as well as Caregiver's Uplift and Burden Scale score (<0.05). We believe that the CC-QoLS is a user friendly, easy to complete, first-ever HRQoL measure for adults with ID and aggressive behaviour with very good psychometric properties.

Early Postoperative Urinary and Sexual Function Predicts Functional Recovery 1 Year after Prostatectomy

Successful treatment of locally confined prostate cancer is defined by postoperative cancer control, continence and potency. The Expanded Prostate Cancer Index Composite (EPIC) is a validated instrument developed specifically for prostate cancer survivors. The EPIC-Sexual Inventory (EPIC-S) and EPIC-Urinary Inventory (EPIC-UIN) assess sexual and urinary function, respectively. We evaluated the usefulness of urinary and sexual function measured by EPIC at baseline and 3-month followup after prostatectomy to predict functional outcomes 1 year postoperatively. We retrospectively reviewed a prospectively maintained, institutional review board approved database for patients treated with prostatectomy from 2000 to 2009. EPIC scores were acquired preoperatively, and at 3 and 12-month followups. We calculated the likelihood of sexual and urinary recovery at 12 months based on 3-month EPIC-UIN and EPIC-S scores. Patients were treated with open (226) or robotic (235) surgery. The 437 patients with complete EPIC-UIN questionnaires had worsened (2.7%), improved (47.8%) or stable (49.4%) urinary function, and the 436 with complete EPIC-S questionnaires had worsened (3.9%), improved (36.9%) or stable (59.2%) sexual function at 12 months compared to 3-month scores. Return to baseline was predicted by 3-month EPIC-UIN scores of 50 or greater (OR 7.76) and EPIC-S scores of 45 or greater (OR 3.64, each p <0.0001). The Pearson correlation coefficient of 3 and 12-month EPIC-UIN and EPIC-S scores was 0.65 and 0.73, respectively. Three-month EPIC-UIN and EPIC-S scores were useful for predicting 12-month functional outcomes. Health related quality of life instruments should be applied in the early postoperative period to aid in counseling patients on recovery.

Rhinitis, sinusitis and ocular disease – 2091. The MSYPQ: repeatability and applicability to rhinitis/rhinosinusitis

Background Sinonasal disease is significantly prevalent in the adult community, this research explores its prevalence within the 11-16 age group in London, UK and in Lahore, Pakistan. Epidemiological assessment was accompanied by assessment of associated compliactions. The Sino-Nasal Outcome Test -20 (SNOT-20) questionnaire, a disease related quality of life instrument, was modified for use in secondary school children for this project. The Modified SNOT-20 for Young Person Questionnaire (MSYPQ) was used in secondary school children in East London with the result compared to a similar adult survey. An analysis of the repeatability of the MSYPQ was carried out in a sample population of 11-16 years olds from Lahore, Pakistan. Methods The pilot project analysed MSYPQ according to and deemed concurent with EPOS criteria, this confirmed that MSYPQ identifies disease subjects and is a good instrument to assess the effect on quality of life. The MSYPQ was used in three large East London schools with analysis for disease prevalence, associated symptoms and effects on quality of life. A further comparative study was designed whereby 200 subjects from a secondary school sample (randomly selected and between 11-16 years old) in Lahore, Pakistan were analysed using MSYPQ to assess the prevalence of rhinitis/rhinosinusitis and its associated comorbidities. Results The results showed that over 32% of secondary school children in the London sample suffered rhinitic/rhinosinusitis symptoms (cough was the most significant symptom). A similar prevalence of 30% was found in adults. More than 21% had their quality of life affected by their symptoms and more than 47% took between 2-15 days off school due to symptoms, compared to 25% and 10% respectively in adults. Data analysis from Lahore confirmed that over 25% suffer from rhinitis/rhinosinusitis with significant associated comorbidities. Its impact on their quality of life and educational performance is substantial. Conclusions This analysis confirmed that sinonasal disease is a common problem in the 11-16 year age group; it impacts on quality of life and performances at school. This study also confirms that MSYPQ is a reliable and repeatable tool for identifying the prevalence and impact of rhinitis/rhinosinusitis.

A review of the psychometric performance of the EQ-5D in people with urinary incontinence

Urinary incontinence can cause embarrassment and can impact on daily activities and quality of life. Generic health related quality of life instruments, such as the EQ-5D, are designed to be applicable across a variety of disease areas. However, it is sometimes claimed that they are not applicable to a certain disease area because they are missing a domain which directly captures the impact of that particular disease. For example, none of the domains of the EQ-5D relate directly to incontinence, although the impact of incontinence on quality of life may be expected to be picked up indirectly through changes in domains such as usual activities or anxiety/depression. The objective of this review was to examine the appropriateness of the EQ-5D in people with urinary incontinence by reviewing published evidence relating to the psychometric performance of the EQ-5D. A systematic search was conducted to identify studies reporting data that permitted assessment of the construct validity, responsiveness or reliability of the EQ-5D in people with urinary incontinence. Included papers were those that reported EQ-5D alongside other measures of health related quality of life or clinical measures in patients with urinary incontinence or in a broader population where results were reported for a subgroup of patients with urinary incontinence. Data were extracted and a narrative synthesis was undertaken. Seventeen papers were included in the review. In most of the tests performed, EQ-5D was consistent with clinical or disease specific outcome measures. The EQ-5D demonstrated validity in the majority of ‘known group’ comparisons, although statistical significance was not always reported. Correlations between the EQ-5D and disease specific outcomes were statistically significant and in the expected direction for most but not all of the disease specific instruments and clinical measures. For responsiveness, there was general agreement between changes in EQ-5D and changes in clinical or disease specific measures. Evidence on reliability was limited to one study. The EQ-5D was generally found to perform well on tests of construct validity, responsiveness and reliability, in people with urinary incontinence although no definitive conclusion can be made on its appropriateness based on these measures alone.

Validation of Online Administration of the Sexual Health Inventory for Men

Previously we reported the development of a novel, inexpensive, online method to collect health related quality of life information to facilitate responses among patients and decrease loss to followup. We validated the practice by comparing responses to the SHIM (Sexual Health Inventory for Men), a representative validated instrument, when administered on line and in the traditional paper form. Consented patients were administered validated health related quality of life instruments, including the SHIM, in office and via e-mail. Responses to the SHIM were compared between the administration formats. Paired sample testing was done to analyze test-retest reliability, concordance was assessed by intraclass analysis and a Bland-Altman plot, and the Cronbach α was used to examine internal reliability. Criterion validity was measured using SHIM defined erectile function categories and a dichotomized potency definition (SHIM 17 or greater). Of the 508 men who consented to participate 359 (71%) completed the SHIM in person, 277 (55%) completed the online form (p <0.001) and 116 (23%) contemporaneously completed each instrument. Comparison of scores revealed little variation and strong correlation (r(2) = 0.83, p <0.001). Intraclass and Bland-Altman analysis revealed strong agreement between the media. The Cronbach α was excellent (0.97) for the online tool. Erectile function classification was identical in 73% of patients with only 7% differing by more than 1 class. Dichotomized potency was consistently defined in 94% of patients. The online administered SHIM maintains validity and provides consistent responses. Online administration can capture patients who do not complete paper questionnaires and may serve as a reliable adjunct to paper administration for validated outcomes research.

Readability of Websites Containing Information About Prostate Cancer Treatment Options

Approximately 90 million American adults have literacy skills that test below a high school reading level. Websites written above this level can pose a challenge for those seeking online information about prostate cancer treatment options. In this study we determine the readability of selected websites using a systematic search process and validated readability formulas. We identified the 3 most popular keywords from 513 terms related to prostate cancer treatment options. We then systematically collected 270 websites from the top 3 search engines, and excluded from study those that were nonEnglish, not primarily text, irrelevant and/or duplicated. We used the Flesch-Kincaid grade level and Flesch Reading Ease to determine scores for each site. A total of 62 unique websites were analyzed. Median Flesch-Kincaid grade level was 12.0 (range 8.0 to 12.0) and median Flesch Reading Ease score was 38.1 (range 0.0 to 65.5). Only 3 sites (4.8%) were written below a high school reading level (less than 9.0). Few websites with discussions on prostate cancer treatment options are written below a high school reading level. This is problematic for a third of Americans who seek to further educate themselves using online resources. Clinicians can use this information to guide their patients to appropriate websites.

Health Related Quality of Life in Adolescents with Bladder Exstrophy-Epispadias as Measured by the Child Health Questionnaire-Child Form 87

We determined health related quality of life as reported by adolescents with bladder exstrophy or epispadias using a validated generic instrument. Adolescents age 11 to 18 years with bladder exstrophy or epispadias (57) completed a validated, generic, health related quality of life instrument, the CHQ-CF87 (Child Health Questionnaire-Child Form 87). Urinary incontinence, catheterization status, and medical and surgical history data were also obtained. Mean summary scores and 95% CIs for each subdomain of the CHQ-CF87 were calculated, and descriptively compared to 2 population based samples. In our sample health related quality of life outcomes by continence status were compared using univariate and multivariate analysis. However, this analysis was limited by a small sample size. Mean age of the 49 patients with bladder exstrophy and the 8 with epispadias was 14.3 years, 67% were male and 81% were Caucasian. There were 31 participants who reported incontinence and the median number of lifetime surgeries was 9. The exstrophy population scored well in all subdomains of the instrument when descriptively compared to 2 large samples of adolescent populations. In our sample incontinent patients had lower scores by multivariate analysis in 7 of 10 domains and better scores in 3 of 10 domains, although these differences were not statistically significant. Adolescents with bladder exstrophy and epispadias reported relatively good scores on the CHQ-CF87 when descriptively compared to other reference populations. This finding suggests that these children adapt well to the challenges of their condition. Analysis of the association of incontinence with health related quality of life was limited by the small sample size.

Applicability of WHO Health Related Quality of Life Instruments [Bref Version] On Adolescent Medical Students Of West Bengal

Aims and Objectives: To assess the applicability of WHO health related quality of life instruments [BREF version] on the adolescent medical students of West Bengal. Methodology: A cross sectional study conducted in six medical colleges of West Bengal, India. The medical students of less than 19 years were taken for the study. The questionnaires of WHO HRQOL BREF was prepared as a proforma and was distributed in six medical colleges and responses were collected .The data was computerized and was analyzed by SPSS version16 software. Results and Interpretation: 132 cases were examined finally with mean age of 18.76 years. The numbers of males were 91 [68.9%] and the numbers of females were 41 [31.1%]. The responses are different in males and females and in students from medical colleges of Kolkata [state capital] or outside Kolkata. The validity of the questionnaire in this subset of population is found mainly in the psychological domain. Conclusions: WHO HRQOL BREF is a good tool to assess the health related quality of medical adolescents.