Generic Quality Of Life Instruments Research Articles

An empirical comparison of sleep-specific versus generic quality of life instruments among Australians with sleep disorders

PurposeIn Australian adults diagnosed with a sleep disorder(s), this cross-sectional study compares the empirical relationships between two generic QoL instruments, the EuroQoL 5-dimension 5-level (EQ-5D-5L) and ICEpop CAPability measure for Adults (ICECAP-A), and three sleep-specific metrics, the Epworth Sleepiness Scale (ESS), 10-item Functional Outcomes of Sleep Questionnaire (FOSQ-10), and Pittsburgh Sleep Quality Index (PSQI).MethodsConvergent and divergent validity between item/dimension scores was examined using Kendall’s Tau-B correlation, with correlations below 0.30 considered weak, between 0.30 and 0.50 moderate and those above 0.50 strong (indicating that instruments were measuring similar constructs). Exploratory factor analysis (EFA) was conducted to identify shared underlying constructs.ResultsA total of 1509 participants (aged 18–86 years) were included in the analysis. Convergent validity between dimensions/items of different instruments was weak to moderate. A 5-factor EFA solution, representing ‘daytime dysfunction’, ‘fatigue’, ‘wellbeing’, ‘physical health’, and ‘perceived sleep quality’, was simplest with close fit and fewest cross-loadings. Each instrument’s dimensions/items primarily loaded onto their own factor, except for the EQ-5D-5L and PSQI. Nearly two-thirds of salient loadings were of excellent magnitude (0.72 to 0.91).ConclusionModerate overlap between the constructs assessed by generic and sleep-specific instruments indicates that neither can fully capture the complexity of QoL alone in general disordered sleep populations. Therefore, both are required within economic evaluations. A combination of the EQ-5D-5L and, depending on context, ESS or PSQI offers the broadest measurement of QoL in evaluating sleep health interventions.

Lifetime cost-effectiveness analysis osseointegrated transfemoral versus socket prosthesis using Markov modelling.

Prior cost-effectiveness analyses on osseointegrated prosthesis for transfemoral unilateral amputees have analyzed outcomes in non-USA countries using generic quality of life instruments, which may not be appropriate when evaluating disease-specific quality of life. These prior analyses have also focused only on patients who had failed a socket-based prosthesis. The aim of the current study is to use a disease-specific quality of life instrument, which can more accurately reflect a patient's quality of life with this condition in order to evaluate cost-effectiveness, examining both treatment-naïve and socket refractory patients. Lifetime Markov models were developed evaluating active healthy middle-aged male amputees. Costs of the prostheses, associated complications, use/non-use, and annual costs of arthroplasty parts and service for both a socket and osseointegrated (OPRA) prosthesis were included. Effectiveness was evaluated using the questionnaire for persons with a transfemoral amputation (Q-TFA) until death. All costs and Q-TFA were discounted at 3% annually. Sensitivity analyses on those cost variables which affected a change in treatment (OPRA to socket, or socket to OPRA) were evaluated to determine threshold values. Incremental cost-effectiveness ratios (ICERs) were calculated. For treatment-naïve patients, the lifetime ICER for OPRA was $279/quality-adjusted life-year (QALY). For treatment-refractory patients the ICER was $273/QALY. In sensitivity analysis, the variable thresholds that would affect a change in the course of treatment based on cost (from socket to OPRA), included the following for the treatment-naïve group: yearly replacement components for socket > $8,511; cost yearly replacement parts OPRA < $1,758; and for treatment-refractory group: yearly replacement component for socket of > $12,467. The use of the OPRA prosthesis in physically active transfemoral amputees should be considered as a cost-effective alternative in both treatment-naïve and treatment-refractory socket prosthesis patients. Disease-specific quality of life assessments such as Q-TFA are more sensitive when evaluating cost-effectiveness.

A48 PARENT-REPORTED HEALTH RELATED QUALITY OF LIFE CARING FOR CHILDREN WITH PEDIATRIC FEEDING DISORDERS IN ALBERTA

Abstract Background Children with pediatric feeding disorders (PFD), including those requiring tube feeding, need significant care. Caregiver burden includes time, cost, as well as worry over patient morbidity and mortality (1). This project used a validated health-related quality of life (HRQoL) tool for caregivers of children with PFD: the Feeding/Swallowing Impact Survey (FS-IS). The FS-IS has three subscales related to daily activities, worry, and feeding concerns, scored 1-5 with 5 being the most adverse. Prior studies have shown both the total sub-scale scores and the total score correlate with generic quality of life instruments for pediatric caregivers (2). Data was obtained from a provincial quality improvement initiative, the Alberta Provincial Pediatric Eating and Swallowing (PEAS) Project. Aims 1. To determine the HRQoL reported by caregivers of children with PFD in Alberta. 2. To determine if tube-feeding is associated with worse reported HRQoL. Methods Caregivers receiving feeding and swallowing services in Alberta were offered the opportunity to complete the FS-IS online or by phone at baseline and 12 months later. All demographic data was self-reported. Results In total 52 caregivers completed the surveys once and 16 at follow-up. Average baseline FSIS was 3.1 (range 1.2-4.7) and at follow up was 3.0 (range 1.5-4.2). There was no difference between the scores of those completing at both time points (p=0.78). At all time points, only 15% of the cohorts reported scores ≤2. As shown in Table 1, children who were tube-fed were older with a longer duration of PFD symptoms, however, HRQoL scores were not different to children not ever tube-fed. Conclusions Caregivers of children with PFD face challenges, which do not abate over time. Surprisingly, in our cohort, this is independent of the need for tube feeding and of the duration of PFD symptoms, although we acknowledge the small sample size of those who were never tube-fed. Longitudinal follow-up studies and strategies to improve quality of life are needed. * FS-IS Global Score (1=never to 5=almost always) Funding Agencies Alberta Health Services Maternal Newborn Child &amp; Youth Strategic Clinical Network

OGBN O03 Quality of life of patients with gastroesophageal reflux disease: findings from a systematic literature review

Abstract Background Gastroesophageal reflux disease (GERD), affecting over a billion people worldwide, is associated with significant impairment and productivity loss. Understanding the quality of life among GERD patients may provide important clinical relevance to treatment management and highlight the patient perspective. The aim of this study was to conduct a systematic review of GERD and quality of life, including any potential effects on treatment management. Methods MEDLINE, Embase, and the Cochrane Library were searched for randomized controlled trials, case-control, and cohort studies published in English from 2013 to 2023. Eligible studies included adult GERD patients with quality of life data from a disease-specific or generic instrument. Data analysis contained a narrative synthesis of pre- and post-procedural total scores. Results Eight trials and 34 observational studies were included. The disease-specific instruments GERD Health-Related Quality of Life (GERD-HRQL) (n = 35) and Gastrointestinal Quality of Life Index (GIQLI) (n = 4) had baseline mean scores ranging from 13.3 to 37.1 and 72.0 to 96.3, which changed to 1.3 to 31.6 and 94.8 to 119.8 post-treatment, respectively. Besides the Reflux Symptom Index (RSI) (n = 3), EQ-5D, Psychological General Well-Being (PGWB), SF-36, and GastroEsophageal Reflux Symptom Score (GERSS) were only used by single studies to evaluate the quality of life among GERD patients. In general, these results indicated an improvement post-treatment. Conclusions As a general finding, patients with GERD have poor quality of life and active treatment seems to influence and improve GERD patients’ quality of life, considering the pre-post results of GERD-HRQL and GIQLI scores. As expected, generic quality of life instruments are seldom used.

The commonly used adult generic quality of life instruments for chronic diseases with merits and demerits

Abstract A chronic condition is a physical or emotional wellness condition that endures over a year, causes utilitarian limitations, or requires progressing checking or treatment. The aging of the population has caused a high prevalence of chronic illnesses, such as diabetes, cardiovascular diseases, and cancer. Even though individuals live longer, they often live with disabilities and constant illnesses. Quality of life (QOL) has become a critical idea and focus for examination and practice in the fields of well-being and medication. During the previous years, more examination has focused on patients’ QOL, and the utilization of QOL evaluations has expanded. Health-related QOL (HRQOL) is now mandatory in assessing health outcomes. Searches were conducted using PUBMED, Google Scholar, Web of Science, and Google to find the studies published in peer-reviewed journals. Key search terms included HRQOL, QOL, SF-36, MQOL, COOP chart, SIP, NHP, QWB, EQ-5D, and EuroQol Instrument. Relevant articles were chosen from the search results. This review provides researchers and clinicians with up-to-date practical and comparative information on adult generic QOL instruments to help them decide which the instrument is best suited for their study. It examines the Medical Outcomes Study 36-Item Short Form (SF-36) Health Survey, the McGill QoL Questionnaire – Original (MQOL – Original), the Dartmouth Primary Care Cooperative Information Project (COOP) Charts, Sickness Impact Profile (SIP), Nottingham Health Profile (NHP), Quality of Well-Being (QWB) scale, and the EuroQOL 5-Dimension Instrument (EQ 5-D). This paper looks at 7 HR-QOL instruments and finds that there are no consistently “best” or “worst” instruments. The choice to use the generic QOL measure is driven by the reason for the assessment.

Correlation between Generic and Disease-Specific Quality of Life Questionnaires in Patients with Venous Ulcerations: A Cross-Sectional Study Carried out in a Primary Health Care Setting in Brazil.

Venous Ulcers (VU) are a serious health problem that affect the Quality of Life (QoL). They are evaluated by many different scales in the literature. We aimed to analyze the correlation between the Medical Outcomes Short-Form Health QoL (SF-36) and Charing Cross Venous Ulcer Questionnaire (CCVUQ) scales. This is a cross-sectional study conducted in a Brazilian center specializing in chronic VU of the Primary Health Care (PHC) provided to patients with active VU. The general QoL instrument SF-36 and the CCVUQ, specific for people with VU, were used. Spearman's Rho Test determined the correlation between the variables analyzed. Our sample had a total of 150 patients. We found a direct correlation between the domestic activities division (CCVUQ) aspect and the SF-36 Physical role functioning (strong), and Physical functioning (moderate) domains. The Social interaction division (CCVUQ) aspect presented moderate correlation with the domains of the SF-36 Physical role functioning and Physical functioning. The Vitality domain (SF-36) showed moderate correlation with the aspects of CCVUQ Cosmesis division and Emotional status division. The greatest forces of direct correlation were observed between the physical, functional and vitality aspects of SF-36 with those represented by domestic activities and social interaction in the CCVUQ.

DOP23 Decrements in quality of life associated with symptoms of Inflammatory Bowel Disease: results from the UK IBD-BOOST survey

Abstract Background Inflammatory Bowel Disease (IBD) affects about 7 million people worldwide. People with active disease often experience symptoms of abdominal pain, fatigue and incontinence which may persist even in remission. We assess the impact of these symptoms, and the further contribution of anxiety and depression, on health-related quality of life (QoL) of people with IBD. Methods In the IBD-BOOST survey, over 12,500 people with IBD in the UK were approached across outpatient clinics, the IBD-BioResource participants and the Crohn’s and Colitis UK charity membership; 8486 self-completed surveys were returned. Participants’ QoL was measured using the EQ-5D-5L questionnaire, a generic health-related QoL instrument. Patients’ QoL, ranging from 1 (perfect health) to -0.594 (worst health) was calculated using UK value set. Our approach involved three pre-specified stages of linear regression model development to assess the effects of symptoms on QoL. At stage 1 the model included IBD type, IBD activity score, IBD control score, socio-demographic characteristics and co-morbidities. At stage 2, the three key IBD symptoms: pain, fatigue and bowel incontinence were added. At stage 3, anxiety and depression were also included. Results Table 1 presents selected characteristics of the 8486 IBD-BOOST survey participants (mean age 50 years, 58% women, 49% Crohn’s disease). The EQ-5D-5L questionnaire was completed by 8114 (96%) participants reporting problems across QoL domains (Figure 1: 30% problems with mobility, 13% with self-care, 43% with usual activities, 60% pain/discomfort and 50% anxiety/depression). The mean QoL was 0.76 (SD 0.22). Health-related QoL was substantially reduced in respondents reporting higher IBD activity or worse IBD control (Table 2; stage 1). These associations weakened substantially following adjustment for the key IBD symptoms of pain, fatigue and bowel incontinence for which strong and graded associations with higher symptom severity associated with lower QoL were observed (Table 2; stage 2). The further inclusion of adjustments for anxiety and depression only moderately weakened previous associations and strong and graded associations between more severe anxiety or depression and lower QoL were also observed (Table 3; stage 3). Being male, obese, unemployed/retired, or having physical or mental health comorbidity were associated with lower QoL, and being in a relationship with higher QoL (results not shown). Conclusion We report graded associations between symptoms of pain, fatigue, bowel incontinence, anxiety and depression and QoL in IBD. These estimates could inform assessments of interventions to improve IBD management.

Comprehensive Quality-of-Life Outcomes With Invasive Versus Conservative Management of Chronic Coronary Disease in ISCHEMIA.

ISCHEMIA (International Study of Comparative Health Effectiveness with Medical and Invasive Approaches) compared an initial invasive treatment strategy (INV) with an initial conservative strategy in 5179 participants with chronic coronary disease and moderate or severe ischemia. The ISCHEMIA research program included a comprehensive quality-of-life (QOL) substudy. In 1819 participants (907 INV, 912 conservative strategy), we collected a battery of disease-specific and generic QOL instruments by structured interviews at baseline; at 3, 12, 24, and 36 months postrandomization; and at study closeout. Assessments included angina-related QOL (19-item Seattle Angina Questionnaire), generic health status (EQ-5D), depressive symptoms (Patient Health Questionnaire-8), and, for North American patients, cardiac functional status (Duke Activity Status Index). Median age was 67 years, 19.2% were female, and 15.9% were non-White. The estimated mean difference for the 19-item Seattle Angina Questionnaire Summary score favored INV (1.4 points [95% CI, 0.2-2.5] over all follow-up). No differences were observed in patients with rare/absent baseline angina (SAQ Angina Frequency score >80). Among patients with more frequent angina at baseline (SAQ Angina Frequency score <80, 744 patients, 41%), those randomly assigned to INV had a mean 3.7-point higher 19-item Seattle Angina Questionnaire Summary score than conservative strategy (95% CI, 1.6-5.8) with consistent effects across SAQ subscales: Physical Limitations 3.2 points (95% CI, 0.2-6.1), Angina Frequency 3.2 points (95% CI, 1.2-5.1), Quality of Life/Health Perceptions 5.3 points (95% CI, 2.8-7.8). For the Duke Activity Status Index, no difference was estimated overall by treatment, but in patients with baseline SAQ Angina Frequency scores <80, Duke Activity Status Index scores were higher for INV (3.2 points [95% CI, 0.6-5.7]), whereas patients with rare/absent baseline angina showed no treatment-related differences. Moderate to severe depression was infrequent at randomization (11.5%-12.8%) and was unaffected by treatment assignment. In the ISCHEMIA comprehensive QOL substudy, patients with more frequent baseline angina reported greater improvements in the symptom, physical functioning, and psychological well-being dimensions of QOL when treated with an invasive strategy, whereas patients who had rare/absent angina at baseline reported no consistent treatment-related QOL differences. URL: https://www. gov; Unique identifier: NCT01471522.

Quality of Life among Youths having Repaired Non-syndromic Cleft Lip and Palate in Karachi

Abstract&#x0D; Objective: To compare general quality of life of youths having repaired non-syndromic CLP with controls using a generic quality of life instrument, Youth Quality of Life – Research Version (YQOL-R).&#x0D; Methods: case control study was conducted from January, 2017 to December, 2018. Inclusion criteria was patients having repaired non syndromic Cleft Lip and Palate, age 15 to 29 years, of either gender while controls were healthy individuals of similar age. Quality of life was measured using validated YQOL-R instrument. Data of 62 cases and 107 healthy controls, consented for study was analysed using statistical software, SPSS version 20.&#x0D; Results:. Mean age was 22.09+5.04. Cronbach’s alpha for domains of sense of self was 0.630, relationship domain (0.795), environmental domain (0.826) and general quality of life domain was 0.688 and for YQOL-R was 0.866. Significant difference was observed for self care domain (63.10 vs. 73.50; p-value = 0.001), relationship domain (79.5 vs. 83.73; p-value = 0.013), environmental domain (70.89 vs. 84.60; p-value = 0.001), general quality of life domain (79.80 vs. 86.04; p-value = 0.012) and percent score of total perceptual score between cases and controls (73.32 vs. 81.97; p-value = 0.001). &#x0D; Conclusion: Compared to cases healthy controls had a better quality of life as they have significantly better results in self care, relationship, environment and general quality of life domains along with mean perceptual percentage.

Psychometric Evaluation of the Krogh-Poulsen Test for the Diagnosis of the Temporomandibular Disorders.

The Krogh-Poulsen Test is a classic instrument to measure dysfunction of the stomatognathic system whose psychometric properties are unknown. This study aimed to evaluate the psychometric properties of the Krogh-Poulsen Test for the diagnosis of temporomandibular disorders (TMDs). A cross-sectional study was designed, including 119 patients (63 patients with TMD and 56 healthy controls). Factorial validity, inter-rater reliability, error of measurement, diagnostic validity of the Krogh-Poulsen Test, and concurrent validity were analyzed. The Krogh-Poulsen Test showed a three-factor structure. The inter-rater agreement could be considered very good with a kappa index of 0.87 (95% CI 0.83–0.90) and Standard Error of Measurement of 0.79. Correlations were strong with other orofacial instruments, moderate with instruments measuring TMD-related disorders such as neck pain, headache, or dizziness, and poor with generic quality of life instruments. The Area Under the Curve ROC was 0.928 showing, for a cut-off point >1, a sensitivity of 90.48 (95% CI 80.4–96.4) and a specificity of 85.71 (95% CI 73.8–93.6) for the diagnosis of TMD disorders. The Krogh-Poulsen Test showed a three-factor structure, very good inter-rater reliability, a strong correlation with other orofacial instruments, and an excellent capacity to discriminate between patients with or without TMD.

Instruments used to assess quality of life of older adults in African countries: a scoping review

BackgroundOver 60% of the population in sub-Saharan Africa, live in informal settlements (slums) with little or no resources. To be prepared to meet the needs of older people living in slums, it is necessary to know more about their quality of life (QoL). The objective of this review is to identify instruments, which can be used by researchers to assess the QoL of older adults living in African countries, especially those dwelling in slums.MethodsA scoping review was performed using the databases Scopus, PubMed, and ISI Web of Science to retrieve studies published from January 2008 – September 2020. Studies were included if they reported generic QoL instruments, focused on adults with a mean age ≥ 50 and were conducted in African countries.ResultsIn total, 18 studies were included using 7 unique instruments to measure QoL (EUROHIS-QOL-8, SWLS, WHOQOL-OLD, the WHOQOL-BREF, SF-36, SF-12 and RAND-38). All instruments could be interviewer-administered and had 5–36 items. However, little is known about their psychometric properties (validity and reliability), time-investment and cultural sensitivity of the domains included in the instruments.ConclusionsEven though this review retrieved instruments used to assess QoL of older adults in African countries, there is a need for further research on adjustment and validation of currently existing QoL instruments. In addition, the development and validation of a new instrument which can be used in (illiterate) older populations, living in slums in Africa should be considered.

P156 Translation into Spanish, adaptation and validation of the “IBD- control”, a short validated English PRO (patients reported outcomes) questionnaire: the EII-Control

Abstract Background The measure of patient reported outcomes (PROM) in inflammatory bowel disease (IBD) clinical practice, is hardly to use as it lacks a simple and valid tool. There is a short, generic and validated English questionnaire for this purpose: the IBD Control. Its validation and application in other IBD populations is necessary and would support its practical use. Our purpose is to translate into Spanish, adapt and validate the “IBD- control” in our ambit and culture, in order to have a useful measure for clinical practice. Methods The IBD-control was translated into Spanish, demonstrating its understandability, content, validity and acceptability for patients, generating the EII-Control instrument. Subsequently, the EII-Control was prospectively validated, using current psychometric standards. At the baseline visit, consecutive patients completed the EII-Control, the short form of IBD quality of life (QOL) questionnaire (CVEII-9), the generic QOL instrument (EQ-5D), the hospital anxiety and depression scale (HDA and HDS), the fatigue questionnaire (FSS), as well as a clinical assessment, blind to the questionnaires (global clinical rating, Harvey-Bradshaw indice or simple index of clinical activity of colitis (SSCAI) and treatment outcome). A subgroup of patients repeated the assessment on a second visit within the study period. The usefulness of summary scales of the IBD-Control, was also analyzed (EII-Control-8 and EII-control-VAS). Results 249 patients completed the baseline surveys (Crohn’s disease, n = 177; ulcerative colitis, n = 71 and indeterminate colitis, n = 1) and 101 repeated the same assessment on a second routine visit. Internal consistency: Cronbach’s for EII-control 0.83 with strong correlation between EII-Control-8 and EII-Control-VAS subscales (r = 0.5). Reproducibility: intraclass correlation = 0.70 for EII-Control and 0.61 for EII-Control-VAS. Construct validity: moderate to strong correlations between EII-Control versus activity, anxiety, depression, fatigue or quality of life indices Discriminant validity: (mean scores of the instruments for remission, mild, moderate or severe): p &amp;lt;0.001. Sensitivity to change: same response in effect size and mean differences as CCVEII-9. Sensitivity and specificity at cut-off 14 of 0.696 and 0.903 respectively to determine the quiescent state. Conclusion The EII-Control is a rapid, reliable, valid and sensitive instrument to measure the overall control of the disease from the perspective of the patient in spanish culture. Its simplicity, ease of use, and generic applicability make it a candidate for supporting routine care, including telemedicine, and also to use in clinical research.

Health-related quality of life in bladder cancer patients: general and cancer-specific instruments. Part 1.

Although survival outcomes are the primary outcomes to determine the effectiveness of treatment options, quality of life (QoL) is gaining in importance in addition to classic oncological outcomes. The present review aims to state and critically assess the challenges in health-related QoL (HRQoL) assessment especially in bladder cancer (BC) patients. General QoL-instruments do not address concerns specific to cancer patients or BC patients. Domains, such as sexual functioning, embarrassment, self-consciousness, psychological distress, and urinary incontinence, are not adequately covered by any of the available instruments. With these QoL-instruments becoming increasingly specialized, the general aspects of QoL and possible unanticipated adverse effects are no longer likely to be accurately assessed. Sex-specific requirements have not been properly addressed by these QoL-instruments. HRQoL is reported to be lower in the elderly population, which may be due to their associated comorbidities and limitations, rather than treatment-related issues. Due to their specifications, BC-specific instruments need to be used together with general QoL instruments to assess overall well being and disease- and treatment-specific QoL. Assessment of age-specific HRQoL is essential to understanding the QoL burden in each age group. QoL assessment calls for more detailed sex-specific questions to accurately address the HRQoL dimensions in men and women alike.

Integrative review and evaluation of quality of life related instruments in pediatric urology

While most paediatric urologists consider patients' quality of life (QOL) important, few actually measure this outcome. Our goal was to assess instruments used in the pediatric urology QOL literature, specifically looking at whether they captured QOL. We searched MEDLINE and EMBASE for articles with a self-described primary outcome of measuring QOL. All validated QOL instruments in the papers were analyzed by QOL instrument content experts. Instruments were classified as focusing on: Functioning or QOL (Table). The term Functioning focuses on performing activities. QOL captures person's perceptions about their position in life, informed by circumstances, functioning and conditions. QOL instruments were further subdivided into generic QOL, health-related QOL (HRQOL) and disease-specific HRQOL. Only direct patient self-reported QOL instruments were then assessed, since they are the most clinically useful, reliably assessing patients' own perception of their QOL. Forty-three publications met inclusion criteria (published 1999-2019). Most common conditions included urinary incontinence (16, 37.2%) and kidney transplantation (12, 27.9%). Overall, 22 unique instruments purporting to measure QOL were identified. Looking at the concepts measured by each instrument, nine instruments (40.9%) assessed Functioning. Nine instruments (40.9%) measured a combination of Functioning and QOL. Only the remaining 4 instruments (18.2%) assessed strictly QOL. The 13 instruments assessing any QOL focused on generic QOL (n=4), HRQOL (n=3) and disease-specific HRQOL (n=6). Of the subset of four instruments assessing strictly QOL, and not Functioning, all had patient self-reported versions available: two generic QOL instruments (KINDL, KIDSCREEN), one generic HRQOL (DISABKIDS), and one disease-specific HRQOL (QUALAS). Thirteen of 43 studies (30.2%) employed more than one instrument. Thirty-eight studies (88.4%) used an instrument measuring Functioning, with 19 (44.1%) measuring only Functioning, not QOL at all. Twenty-four studies (55.8%) used an instrument measuring actual QOL, although 17 (39.5%) used a combined Functioning/QOL instrument. Only nine (20.9%) used a strictly QOL instrument (strictly HRQOL instruments: 4.7%). We present encouraging evidence of sustained interest in QOL research in pediatric urology and identify areas needing improvement. Selecting appropriate QOL tools requires a working knowledge of their various underlying meanings and purposes. Whether it adequately assess QOL must be considered. We discuss strengths and weaknesses of instruments and a practical approach to QOL instrument selection. Much of pediatric urology is grounded in improving QOL. Unfortunately, most studies published to date focus on Functioning, rather than young people's perception-based QOL. Future QOL studies should ideally employ validated instruments capturing patient-reported QOL.

A structured patient empowerment programme for primary immunodeficiency significantly improves general and health-related quality of life

IntroductionPrimary immunodeficiencies (PIDs) are a heterogeneous group of rare diseases characterized by increased susceptibility to infections and a reduced quality of life (QoL). The influence of a patient empowerment programme for PID (PID-PEP) on general and health-related QoL was assessed in the present study.Material and methodsPID-PEP is provided by a multidisciplinary team for patients with PID and immunoglobulin G (IgG) replacement therapy during a weekend course to improve patient self-management regarding chronic disease and long-term therapy. Twenty-six adult patients with PID undergoing PID-PEP were recruited. Short Form-36 (SF-36) and the Life Quality Index (LQI) were assessed as generic and disease-specific QoL instruments before as well as 6 months after the programme.ResultsMedian visual analogue scale (VAS) values of present health status significantly increased from 68 at baseline to 76 after PID-PEP (p = 0.002). Furthermore, the SF-36 mental component summary (MCS) significantly improved from 36 to 43 following the programme (p = 0.042). Of the eight SF-36 dimensions, vitality (VT) significantly improved (p = 0.025). Median LQI index significantly increased from 77 at baseline to 86 after PID-PEP (p = 0.008). Furthermore, the LQI domains treatment interference (I) and therapy-related problems (II) significantly improved.ConclusionsOur PID-PEP significantly improved general and health-related QoL. It needs to be evaluated in future studies whether the beneficial effects of PID-PEP are sustained over longer periods of time and whether repeated PID-PEP sessions further improve QoL outcome.

Nutritional Risk in Cancer Patients 65 and Older Undergoing Systemic Phase I Treatment.

Malnutrition is common in cancer patients and recognized as an important component of adverse outcomes, including increased morbidity, mortality, and decreased quality of life (QOL). Quality of life is an overarching term for quality of various domains of life. It is a standard level that consists of the expectations of an individual for a good life. These expectations are guided by values, goals, and sociocultural context. It is a subjective, multidimensional concept defining a standard level for emotional, physical, material, and social well-being (Bottomley, 2012). Nutritional risk is not consistently assessed in the older adult cancer patient population. The purpose of this secondary analysis was to identify variables related to nutritional risk in the cancer patient 65 years and older receiving systemic treatments. The study described the relationship between nutritional risk and four domains of QOL (physical, social, emotional, and functional). A sample of 73 patients was accrued for this study from an NCI-funded RO1 aimed at integrating supportive care for cancer patients. The Mini Nutritional Assessment—Short Form instrument was used to assess for nutritional risk. Findings revealed the strongest correlation with nutritional risk was BMI status (r = .47, p < .0001). Multiple regression analysis demonstrated factors associated with nutritional risk included BMI, previous chemotherapy, and physical subscale of the Functional Assessment of Cancer Therapy—General QOL instrument. Descriptive data reinforced the importance of assessment and intervention to support nutritional status. Nutrition impacts all dimensions of QOL and is even more important in an aging population. Advanced practitioners can contribute greatly to advancing this area of practice.

Clinical severity measures and quality-of-life burden in patients with mycosis fungoides and Sézary syndrome: comparison of generic and dermatology-specific instruments.

Given the severe symptom burden and chronic nature of mycosis fungoides (MF) and Sézary syndrome (SS), effective assessment of quality of life (QoL) is essential to guiding patient-centred care in this population. In this study, we aim to provide a comprehensive assessment of QoL in early- and advanced-stage MF/SS and to assess the correlation of traditional measures of clinical severity with QoL measures. Between July 2017 and April 2019, outpatients at an academic medical centre with either MF/SS (n=115) or general dermatology concerns (n=115) completed generic and dermatology-specific QoL instruments [Health Utilities Index Mark 3 (HUI3), RAND 36-Item Short-Form Health Survey (SF-36), Skindex-29, visual analogue scale for itch (VAS itch) and 5-D pruritus scale]. The mean scores of MF/SS patients were compared to that of controls using multivariable regression models adjusted for demographics and medical comorbidities. Cluster analysis of the QoL instruments and clinical severity measures (e.g. stage and body-surface-area involvement) was performed. Patients with MF/SS scored significantly worse than controls on all QoL instruments used, with advanced-stage (IIB-IVB) disease having the worst QoL impairment. Early-stage (IA-IIA) and advanced-stage MF/SS patients had significantly reduced overall health status (HUI3; P<0.05), with largest decrements in social functioning and usual role functioning due to physical and emotional health (SF-36; all P<0.05). MF/SS had significantly worse skin-specific impairment than controls, with advanced-stage disease reporting the most severe skin-specific burden (Skindex-29, P<0.05). Clinical severity measures had a weak correlation with generic (|rs |=0.02-0.27) and moderate correlation with dermatology-specific instruments (|rs |=0.41-0.53). MF/SS have a significant impact on multiple domains of patients' QoL, including social, emotional and physical functioning. Current clinical measures do not adequately address QoL outcomes, underscoring the need for integrating formal disease-specific QoL assessment into the routine evaluation of MF/SS patients.

Evaluation of osteoarthritis knee and hip quality of life (OAKHQoL): adaptation and validation of the questionnaire in the Hungarian population.

Background:At least 17% of the population suffers from osteoarthritis (OA) in Hungary, according to the European Health Interview Survey. In Hungary, until now there was no OA-specific questionnaire available for the lower limb, in order to monitor the health-related quality of life (HRQoL). This gap gave the relevance of this research. The aim of the study was to perform the Hungarian cross-cultural adaptation and validation of the French-developed Osteoarthritis Knee and Hip Quality of Life (OAKHQoL) questionnaire.Methods:The five-step translation procedure of the original OAKHQoL was performed by the expert panel and the translators. The created Hungarian version (OAKHQoL-HUN) was tested in six different geographical areas of Hungary. The validity and the reliability of this adapted tool was analyzed by our research group.Results:A total of 99 patients completed the questionnaires (78 women and 21 men), with the average age of 66.6 years (standard deviation (SD) 12.1), living with OA for more than 10 years. Excellent internal consistency was observed in the following domains: physical activity (α = 0.93), mental health (α = 0.91) and pain (α = 0.89). Good correlation was determined between physical subscales (r = 0.615–0.676) and mental subscales (r = 0.633–0.643) compared to generic quality of life instruments (World Health Organization Quality of life – BREF questionnaire and EQ-5D-3L).Conclusion:The OAKHQoL-HUN is the first valid and reliable tool for measuring the Hungarian lower limb OA patients’ quality of life.Trial Registration:This study is registered (24950-3/2016/EKU) by the National Ethics Committee: the Hungarian Medical Research Council.

The quality of life of the cluster headache patients during the active phase of the headache

Cluster headache (CH), which affects 0.1% of the population, is one of the most painful human conditions: despite adequate treatment, the frequent and severe headaches cause a significant burden to the patients. According to a small number of previous studies, CH has a serious negative effect on the sufferers' quality of life (QOL). In the current study, we set out to examine the quality of life of the CH patients attending our outpatient service between 2013 and 2016, using generic and headache-specific QOL instruments. A total of 42 CH patients (16 females and 26 males; mean age: 39.1±13.5 years) completed the SF-36 generic QOL questionnaire and the headache- specific CHQQ questionnaire (Comprehensive Headache- related Quality of life Questionnaire), during the active phase of their headache. Their data were compared to those of patients suffering from chronic tension-type headache (CTH) and to data obtained from controls not suffering from significant forms of headache, using Kruskal-Wallis tests. During the active phase of the CH, the patients' generic QOL was significantly worse than that of normal controls in four of the 8 domains of the SF-36 instrument. Apart from a significantly worse result in the 'Bodily pain' SF-36 domain, there were no significant differences between the CH patients' and the CTH patients' results. All the dimensions and the total score of the headache-specific CHQQ instrument showed significantly worse QOL in the CH group than in the CTH group or in the control group. Cluster headache has a significant negative effect on the quality of life. The decrease of QOL experienced by the patients was better reflected by the headache-specific CHQQ instrument than by the generic SF-36 instrument.

Validating a Quality-of-Life Instrument for Allergic Contact Dermatitis.

Contact dermatitis is a prevalent condition that has a significant impact on quality of life (QoL). Although many generic dermatological QoL instruments exist, none were developed by and for patients with allergic contact dermatitis (ACD). The aim of the study was to create and validate a reliable QoL instrument specific for the ACD population. We identified QoL items specific to ACD through a series of qualitative interviews with ACD patients and experts. We created a 17-question survey that queries the patient across the following 3 major domains: symptoms, functioning, and emotions. We used statistical methods to evaluate the reliability and validity of this tool. Ninety patients with relevant positive results on patch testing completed the novel ACD instrument and the Skindex-29. This instrument exhibited reliability and validity in individuals with ACD and was more sensitive than the generic tool Skindex-29. This novel instrument is the first tool developed specifically to assess the unique impacts of ACD on QoL. Providers can reliably use this index to assess the specific aspects of the disease most problematic for the ACD patient and use this information to more properly inform counseling and management.