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Background: Study participants and patients often perceive (long) questionnaires as burdensome. In addition, paper-based questionnaires are prone to errors such as (unintentionally) skipping questions or filling in a wrong type of answer. Such errors can be prevented with the emergence of mobile questionnaire apps. Objective: This study aimed to validate an innovative way to measure the quality of life using a mobile app based on the EQ-5D-5L questionnaire. This validation study compared the EQ-5D-5L questionnaire requested by a mobile app with the gold standard paper-based version of the EQ-5D-5L. Methods: This was a randomized, crossover, and open study. The main criteria for participation were participants should be aged =18 years, healthy at their own discretion, in possession of a smartphone with at least Android version 4.1 or higher or iOS version 9 or higher, digitally skilled in downloading the mobile app, and able to read and answer questionnaires in Dutch. Participants were recruited by a market research company that divided them into 2 groups balanced for age, gender, and education. Each participant received a digital version of the EQ-5D-5L questionnaire via a mobile app and the EQ-5D-5L paper-based questionnaire by postal mail. In the mobile app, participants received, for 5 consecutive days, 1 question in the morning and 1 question in the afternoon; as such, all questions were asked twice (at time point 1 [App T1] and time point 2 [App T2]). The primary outcomes were the correlations between the answers (scores) of each EQ-5D-5L question answered via the mobile app compared with the paper-based questionnaire to assess convergent validity. Results: A total of 255 participants (healthy at their own discretion), 117 (45.9%) men and 138 (54.1%) women in the age range of 18 to 64 years, completed the study. To ensure randomization, the measured demographics were checked and compared between groups. To compare the results of the electronic and paper-based questionnaires, polychoric correlation analysis was performed. All questions showed a high correlation (0.64-0.92; P<.001) between the paper-based and the mobile app-based questions at App T1 and App T2. The scores and their variance remained similar over the questionnaires, indicating no clear difference in the answer tendency. In addition, the correlation between the 2 app-based questionnaires was high (>0.73; P<.001), illustrating a high test-retest reliability, indicating it to be a reliable replacement for the paper-based questionnaire. Conclusions: This study indicates that the mobile app is a valid tool for measuring the quality of life and is as reliable as the paper-based version of the EQ-5D-5L, while reducing the response burden. [ABSTRACT FROM AUTHOR]

The aim was to investigate the views of stakeholders on the practical relevance of a broad quality of life (QoL) outcome tool for care in older adults: the Extended Quality of Life Tool (EQLT). We conducted individual interviews and focus groups with a variety of stakeholders involved in the care for older adults which were analyzed using a framework analysis. Stakeholders considered relevant: focus on the client perspective; perspective on QoL broader than health; the possibility to take diversity into account; and the possibility to determine a minimum level of QoL. Three facilitators for implementation of the tool were mentioned as well as four barriers. The EQLT can support conversations with clients about their needs and wishes, thus enabling decisions about care services based on a broad set of domains of QoL. Implementation of the tool should take into account the facilitators and barriers identified in the current study. [ABSTRACT FROM AUTHOR]

Purpose: Deep venous thrombosis induced by iliac vein compression syndrome often interferes with patients' work or daily living. This study aims to investigate the long-term outcome and quality of life in patients with iliac vein compression syndrome after endovascular treatment. Methods: From October 2011 until June 2016, 28 patients with acute deep venous thrombosis diagnosed as iliac vein compression syndrome by ultrasonography were enrolled in this perspective study. Fifteen patients underwent balloon dilation and stent insertion (group A); 13 patients received anticoagulation treatment, thrombolysis, or balloon dilation without stenting (group B). The Medical Outcomes Study-Short Form-36 was used to assess the quality of life preoperatively and after endovascular treatment. The follow-up of Short Form-36 questionnaire was obtained within 12.13 ± 12.04 months after repair. Results: There was no operative mortality in two groups, and technical success was achieved in 14 (93.3%) patients in group A. Thirteen (86.7%) patients were cured in group A, which was significantly higher than that of group B (46.2%, p = 0.042). Only one patient showed occlusion of stent in group A, with a secondary patency rate of 93.3%. Except for 'Role emotion', all remaining domains were significantly improved in group A when compared with preoperative score (p < 0.01). The scores of 'Physical functioning', 'Role physical', and 'General health' in group A were significantly higher than those of group B (p < 0.05). Conclusions: Endovascular stenting to treat iliac vein compression syndrome shows beneficial clinical outcome, cumulative patency rate, and quality of life, with high technical success and low complications. [ABSTRACT FROM AUTHOR]

This article applies a micro-meso-macro analytical framework to understand clinicians' experiences and perspectives of using patient-reported outcome and experience measures (PROMs and PREMs) in routine hospital-based palliative care. We structure our discussion through qualitative analysis of a design and implementation project for using an electronic tablet-based tool among hospital-based palliative clinicians to assess patients' and their family caregivers' quality of life concerns and experiences of care. Our analysis identified three categories of practice tensions shaping clinicians' use of PROMs and PREMs in routine care: tensions surrounding implementation, tensions in standardization and quantification, and tensions that arose from scope of practice concerns. Our findings highlight that clinicians necessarily work within the confluence of multiple system priorities, that navigating these priorities can result in irreducible practice tensions, and that awareness of these tensions is a critical consideration when integrating PROMs and PREMs into routine practice. [ABSTRACT FROM AUTHOR]

Objectives To translate and evaluate the psychometric properties of the Venous Insufficiency Epidemiological and Economic Studies (VEINES) questionnaire, divided into two subscales; symptoms (VEINES-Sym) and quality of life (VEINES-QOL), in a Swedish cohort of patients with venous disease. Methods The original questionnaire was translated into Swedish with forward–backward translation and administered to 112 patients who were consecutively recruited and had varying degrees of chronic venous disease. Mean age was 54.5 ± 15.2 years (range: 19–83) and 75% of the participants were female. All patients completed the RAND 36-item health survey and the VEINES-QOL/Sym. Results The results showed excellent internal consistency for both VEINES-QOL (Cronbach's alpha (α) = 0.93) and VEINES-Sym (α = 0.89). Both the VEINES-QOL and VEINES-Sym correlated well to all the RAND-36 domains, demonstrating good construct validity. Exploratory factor analysis confirmed both subscales of the VEINES-QOL/Sym. Conclusions The Swedish VEINES-QOL/Sym is a valid health-related quality of life instrument for chronic venous disease, both for research purposes and for clinical evaluation. [ABSTRACT FROM AUTHOR]

Purpose Studies on ultrasound-accelerated, catheter-directed thrombolysis of acute deep vein thrombosis emphasize good patency rates and low complication rates. Therefore, we analyzed quality of life besides technical success and patency in our patients after ultrasound-accelerated, catheter-directed thrombolysis. Methods Between 2009 and 2014, 42 patients suffering from iliofemoral deep vein thrombosis received ultrasound-accelerated, catheter-directed thrombolysis. Follow-up included clinical exanimation and ultrasound. Thirty patients (36 interventions), mean age 41.3 years (range 19–71 years), 56.6% women (17/30), completed the surveys. Five different scores were used to assess the quality of life and symptoms of postthrombotic syndrome: SF36, Euro-QOL 5D, PDI, VEINES-QOL/Sym, and the Villalta score. Results Mean therapy duration of ultrasound-accelerated, catheter-directed thrombolysis was 76.4 h and therapeutic success could be reported in 80.5% (29/36). Successful ultrasound-accelerated, catheter-directed thrombolysis was followed by stent angioplasty in 58.3% (21/36) procedures. Overall complication rate was 19.44%, mainly formed by minor bleedings. Mean follow-up was 38.5 months. The primary patency rate was 63.8%, the assisted-primary and the secondary patency rate were 80.5%. We observed an improved quality of life in our patients’ cohort compared to patients suffering from postthrombotic syndrome. Conclusion Although ultrasound-accelerated, catheter-directed thrombolysis is feasible with good patency rates, further prospective randomized trials are necessary to evaluate the value of thrombus removal in iliofemoral deep vein thrombosis in comparison to conservative treatment. [ABSTRACT FROM AUTHOR]

Objective Quality improvement in surgery has mainly been based on clinical database outcomes. This study compared variables from the patient-reported Aberdeen Varicose Vein Questionnaire with the Danish Clinical Vein Database, in order to reveal agreements and differences in symptoms and clinical findings. Methods In the period January–March 2011, 379 legs in 287 patients treated for varicose veins were registered in the Danish Clinical Vein Database and compared to the Aberdeen Varicose Vein Questionnaire. Results Patients and physicians agreed in reduction of symptoms after intervention with one or more complaints still present in 128 (93%) patients according to Aberdeen Varicose Vein Questionnaire compared to the Danish Clinical Vein Database with only 64 (47%) patients. Patients reported cosmetic complaints and teleangiectasies both before and after treatment (p < 0.001) more often than doctors. Conclusion The Aberdeen Varicose Vein Questionnaire has added valuable information to the dialogue between the doctor and patient on which symptoms expecting to improve and which not. [ABSTRACT FROM AUTHOR]

BACKGROUND: Quality of life measurements evaluate surgical results from patients' reported outcomes. OBJECTIVE: To assess the impact of spinal deformity treatment using the Scoliosis Research Society-22 questionnaire. METHODS: SRS-22 data was collected in 545 consecutive patients (425 females-120 males) pre-operatively, 6-, 12- and 24- months post-operatively. Variables included type and age of surgery (mean: 15.14 ± 2.07 years), gender, diagnosis and year of surgery. Age at surgery was divided in: 10-12, 13-15, and 15-19 years. RESULTS: Mean pre-operative SRS-22 scores for the whole group were: function 3.77 ± 0.75; pain 3.7 ± 0.97; self-image 3.14 ± 0.66; mental health 3.86 ± 0.77; total 3.62 ± 0.66. Mean 2-year post-operative scores were: function 4.39 ± 0.42; pain 4.59 ± 0.56; self-image 4.39 ± 0.51; mental health 4.43 ± 0.56; satisfaction 4.81 ± 0.40; total 4.52 ± 0.37 (p < 0.0001). Males performed better at 2-years post-surgery (4.62 ± 0.25) compared to females (4.49 ± 0.39), (p = 0.004). Patients with spondylolisthesis performed worse pre-operatively (2.93 ± 0.26) compared to other diagnoses (p <0.0001). This did not impact 2-year post-operative outcomes. There were no significant changes regarding age or year of surgery, type of operation or between the 3 age groups. CONCLUSIONS: All individual domains and total SRS-22 scores improved significantly with incremental change during postoperative follow-up. Patient satisfaction was very high for all individual diagnosis. 2-year post-operative outcomes compared favorably to reported SRS-22 scores in healthy adolescents. [ABSTRACT FROM AUTHOR]

Introduction: The Burn Specific Health Scale-Brief (BSHS-B) is a popular instrument to measure quality of life (QoL) in burn patients. The current study aims at identifying the prognostic variables for our burn population using the BSHS-RBA (revised, brief and adapted) scale.Materials and Methods: The study was conducted on 60 post-burn patients using the BSHS-RBA scale. The questionnaire was administered by an interview as majority of patients were illiterate. The socio-demographic and clinical variables were analyzed against domain scores and total scores of the scale, using Mann-Whitney test and Kruskal Wallis test.Results: The median age of the sample was 28 years, of which 60% were females. Their median TBSA burn was 30%. The median time since burn at the time of interview was 10 months. Higher scores were noted in the domains of simple abilities and mobility, hand function and interpersonal relationship, while poorer scores were recorded in domains of skin sensitivity and body image.Discussion: The mean score in our study was 2.36, which is quite less as compared to reports from high income countries (range: 2.58-3.36). This study provides an insight on an aspect of burn care outcome, which can be reasonably expected in low income countries with the available standard of care. Being a female, presence of hand and face burn, requirement of corrective surgeries and inability to resume work were factors associated with poor QoL.Conclusion: Strategies to improve QoL of burn patients should target psychological aspects, work rehabilitation (early release of contractures) and skin hypersensitivity (including itching) to derive maximum benefit. [ABSTRACT FROM AUTHOR]

The article discusses the study on the effects of various veno-active drugs (VAD) on chronic venous disease (CVD) patients' quality of life, limb volum reduction, and tibiotarsal range of motion. It details how the study was conducted which involved 136 patients with CVD who were asked to complete a questionnaire. The results reportedly revealed that VAD is linked with improved quality of life and may relieve CVD symptoms.

Aim: The aim of this research was to find out the influence of this disease on the quality of life in children with epilepsy. Methods: To collect the empirical data, we used a standardized questionnaire concerning the quality of life – Quality of Life in Epilepsy for Adolescents (QOLIE-AD-48) designed for an age group of 11 – 18 years. The sample consisted of 70 participants. For statistical analyses, we used descriptive statistical methods. Results: The majority of participants rated their health status as good. Participants indicated difficulties in implementing more demanding activities; half of the participants did not have hardly any problems in meeting domestic and school assignments. For activities requiring concentration and understanding, participants reported the occurrence of problems rarely and sometimes. Participants were not greatly restricted by their parents in what they wanted to do, but half of the participants often did fewer things than they wished to do. They very often had someone who would give them advice, help them or with whom they may talk. In the area of self-perception, most participants did not feel imperfect due to epilepsy and only sometimes did they feel isolated from the others, having been always accepted the way they are. Participants did not agree with the claim that their disease could discriminate them when applying for a job or limit them in choosing a partner. They did not feel that epilepsy should make them mentally unstable. Participants were often concerned about an unexpected epileptic fit and injury during it; they were not concerned about unexpected death. Conclusion: The aim of nursing care is to ensure that the disease is best compensated for so that the child can lead a fulfilling life. The use of the assessment tools, in clinical practice, may help identify the patients' problems and limitations associated with the disease and find appropriate solutions. [ABSTRACT FROM AUTHOR]

Abstract: Background: Coeliac disease (CD) is a chronic condition requiring a gluten-free diet, which is a very demanding diet to maintain on a life-long basis. For this reason it is a condition that can have serious repercussions on the quality of life (QOL). Therefore the need to elaborate a questionnaire on QOL specifically for patients with CD (CDQ): its original language is German, and the translation/validation process represents a considerable challenge involving not only a translation into Italian but also an adaptation to the country''s specific cultural differences. Methods: The questionnaire has been translated according to a “German→Italian→Italian→German” algorithm with reconciliation of the differences. Scores for CDQ are computed overall and over four areas of four items each: emotion, gastrointestinal symptoms, gastrointestinal worries, social problems. Results: CDQ was administered to 171 coeliacs (F 132, mean age 38yrs±14). Completeness was optimal. Item internal consistency was satisfied for 100% and 97% of patients for the specific and generic part, respectively. Cronbach''s α coefficient was 0.7 for all scales. The general CDQ was higher in patients reporting subjective well-being (discriminant validity). Conclusions: The Italian translation of CDQ sounds natural, is easy to understand and reduces possible cultural biases to a minimum. A field test gave results comparable to the original validation, supporting the use of CDQ in cross-national surveys. [Copyright &y& Elsevier]

The article presents information on a study conducted on cervical cancer among South African women. The study was based on the European Organisation for Research and Treatment of Cancer's (EORTC) generic questionnaire for cervical cancer, QLQ-CX24, that assesses the quality of life of patients with cancer. In the study, the QLQ-CX24 was translated into isiXhosa and Afrikaans; and the translated version was completed by 15 isiXhosa- and 15 Afrikaans-speaking patients with cervical cancer.

The aim of this article is to develop and validate a specific tool to assess objective quality of life in elder people and people with disabilities who are social services recipients. The scale was developed in three steps: literature review, development of a pool of items, and panel of 15 experts evaluating the items idoneity, importance, and observability. The questionnaire validation was carried out with a sample composed of 100 adult users of services provided by Matia Fundazioa (San Sebastian, Spain). Reliability was evaluated in terms of internal consistence (Cronbach's Alpha and Spearman-Brown splithalf reliability) and factorial structure (theta and omega reliability). Validity was evaluated in terms of content, discriminant, concurrent and construct validity. The obtained results confirm the FUMAT Scale validity and reliability to assess objective quality of life in elder people and persons with disabilities that are users of social services. [ABSTRACT FROM AUTHOR]

Background The Quality of Life Questionnaire (QOL-Q) is used widely to evaluate the quality of life of persons with intellectual disability (ID). Its validity for use with Spanish-speaking cultures has been demonstrated for individuals with visual disabilities, but not for those with physical or intellectual disabilities. Such was the purpose of the present study. Method Two samples were administered the QOL-Q under standardized procedures. The first sample was composed of 209 Mexican participants with physical disabilities; the second was composed of 424 Spanish participants with ID. The hypothesis tested was: the applicability (i.e. etic properties) of the measure across countries and respondents would be demonstrated if reliability data and if factor composition were similar to the original measure. Cronbach's alpha was used to test reliability and exploratory factor analyses were used to test validity (i.e. factor structure). Results Data indicated that the reliability and factor structure was similar to that reported in the questionnaire's standardization manual and consistent with that reported in a number of Anglo-Saxon countries. Conclusion The present study offers additional support for the valid use of the QOL-Q with Spanish-speaking populations. [ABSTRACT FROM AUTHOR]

This study defines the psychometric properties of the European Organisation for Research and Treatment of Cancer (EORTC) quality of life (QOL) questionnaire designed to measure the QOL of patients with ovarian cancer. The ovarian cancer module (EORTC QLQ-OV28) was developed to supplement the EORTC QLQ-C30. The core questionnaire and the QLQ-OV28 were prospectively administered to 368 ovarian cancer patients after they had been treated with radical or debulking surgery followed by chemotherapy. The QLQ-OV28 module assesses abdominal/gastrointestinal symptoms, peripheral neuropathy, other chemotherapy side-effects, hormonal/menopausal symptoms, body image, attitude to disease/treatment and sexual functioning. Questionnaires were well accepted by patients, baseline compliance rates were 86%, 72% provided a second assessment, less than 3% of the items had missing data. Multi-trait scaling analyses confirmed the hypothesised scales. All hypothesised scales exhibited good psychometric properties. These results support the clinical and psychometric validity of the EORTC QLQ-OV28 module as a supplement to the EORTC QLQ-C30. [Copyright &y& Elsevier]

Background: No official German translation exists for the 50-item Expanded Prostate Cancer Index Composite (EPIC), and no minimal important difference (MID) has been established yet. The aim of the study was to translate and validate a German version of the EPIC with cultural adaptation to the different German speaking countries and to establish the MID.Methods: We translated and culturally adapted the EPIC into German. For validation, we included a consecutive subsample of 92 patients with localized prostate cancer undergoing radical prostatectomy who participated the Prostate Cancer Outcomes Cohort. Baseline and follow-up assessments took place before and six weeks after prostatectomy in 2010 and 2011. We assessed the EPIC, EORTC QLQ-PR25, Feeling Thermometer, SF-36 and a global rating of health state change variable. We calculated the internal consistency, test-retest reliability, construct validity, responsiveness and MID.Results: For most EPIC domains and subscales, our a priori defined criteria for reliability were fulfilled (construct reliability: Cronbach's alpha 0.7-0.9; test-retest reliability: intraclass-correlation coefficient ≥ 0.7). Cross-sectional and longitudinal correlations between EPIC and EORTC QLQ-PR25 domains ranged from 0.14-0.79, and 0.06-0.5 and 0.08-0.72 for Feeling Thermometer and SF-36, respectively. We established MID values of 10, 4, 12, and 6 for the urinary, bowel, sexual and hormonal domain.Conclusion: The German version of the EPIC is reliable, responsive and valid to measure HRQL in prostate cancer patients and is now available in German language. With the suggested MID we provide interpretation to what extent changes in HRQL are clinically relevant for patients. Hence, study results are of interest beyond German speaking countries. [ABSTRACT FROM AUTHOR]