Health-related Quality Of Life Questions Research Articles

Changes in health-related quality of life and sleep habits after a 6-month non-randomised cluster-controlled trial among children with overweight or obesity.

Being overweight or obese can have severe negative psychological impacts and reduce health-related functioning. To improve health-related quality of life (HRQoL) and sleep habits for children with overweight or obesity, it is important to design and implement effective interventions. The aim of this study was to evaluate the effects of a 6-month family-based lifestyle intervention on HRQoL and sleep habits in Norwegian children with overweight or obesity in a primary-care setting. This 6-month, non-randomised, cluster-controlled trial included Norwegian children aged 5-13years with overweight or obesity and their parents. A questionnaire was filled out by the parents. A total of 33 and 52 children in the control group and 41 and 78 children in the intervention group answered the HRQoL and sleep habits questions, respectively, and were included. The intervention group received individual family counselling and participated in physical activity groups and nutrition courses. The Children's Sleep Habits Questionnaire (CSHQ) and Kidscreen-10 index were used to assess sleep habits and HRQoL. At baseline, the mean average scores for HRQoL were 50.0 [standard deviation (SD) 8.1] for the intervention group and 49.0 (SD 10.1) for the control group. For sleep habits at baseline, the mean average scores were 45.2 (SD 11.8) for the intervention group and 46.0 (SD 11.9) for the control group. No significant changes in HRQoL and sleep habits after the intervention were revealed. Overall, the family-based lifestyle intervention targeting overweight and obese children in a primary-care setting showed no significant effect on HRQoL or sleep quality.

Sociodemographic and health risk factors associated with health-related quality of life among adults living in Puerto Rico in 2019: a cross-sectional study

BackgroundPuerto Rico, a US territory, faces numerous challenges adversely affecting public health, including poverty, a fragile healthcare system, inadequate infrastructure, a debt crisis, and vulnerability to climate change-related natural disasters. The impact of these factors on the Health-Related Quality of Life (HRQoL) measure has not been comprehensively evaluated. Only two studies have assessed HRQoL, with the latest conducted in 2011, prior to recent events that could affect public health. This study aimed to assess the HRQoL and associated sociodemographic and health risk factors among adults living in Puerto Rico in 2019.MethodsPrevalence and 95% confidence intervals were used to describe HRQoL and its associations with sociodemographic and health-related variables among adults living in Puerto Rico who answered the Behavioral Risk Factor Surveillance System (BRFSS) survey (n = 4,944) in 2019. Multivariable logistic regression models were developed to identify which of these variables were more likely to be associated with each of the four core HRQoL questions (HRQoL-4), expressed as prevalence odds ratios with 95% confidence intervals adjusted for potential confounders.ResultsThrough a comprehensive multivariable analysis, we uncovered significant risk factors – increasing number of chronic conditions, advanced age, and low income – associated with poor HRQoL among adults living in Puerto Rico. Specifically, our findings suggest that individuals with an increasing number of chronic conditions were more likely to report poor HRQoL across all 4 domains. As the number of reported chronic conditions increases by one, the odds of reporting having: fair/poor general health increased by a factor of 2.24 (POR: 2.24, 95% CI: 2.08–2.41), physical health impairment increased by a factor of 1.93 (POR: 1.93, 95% CI: 1.78–2.08), mental health impairment increased by a factor of 1.90 (POR: 1.90, 95% CI: 1.78–2.02) and activity limitation increased by a factor of 1.27 ( POR: 1.27, 95% CI: 1.13–1.42). Advancing age was associated with all domains of poor HRQoL, except for the mental health domain for which we observed higher rates of poor HRQoL among the younger population (POR: 4.76, 95% CI: 2.4–9.1).ConclusionThis paper shows that the prevalence of poor HRQoL has not improved compared to the only previous study of HRQoL of Puerto Rico in the last decade. We also found that poor HRQoL is associated with having multiple chronic conditions in adults living in Puerto Rico. This may be a consequence of a decline in health services after natural disasters and socioeconomic downturns on the island. The study emphasizes the need for targeted interventions and ongoing monitoring of the population’s HRQoL over time to reach vulnerable subgroups, especially those with chronic conditions, advanced age, and low income, in order to reduce health disparities in Puerto Rico.

Validation of the Finnish version of the food allergy quality of life questionnaire-parent form (F-FAQLQ-PF).

Specific questionnaires about food allergy and health-related quality of life (HRQoL) have been developed and validated in several languages, but not Finnish. We aimed to validate the Finnish Food Allergy Quality of Life Questionnaire-Parent Form (FAQLQ-PF) for children under age 13 years. The original FAQLQ-PF and Food Allergy Independent Measure (FAIM) were translated into Finnish per World Health Organisation guidelines and tested by 72 parents of children under age 13 years with suspected severe peanut or tree nut allergy who were recruited at Allergy Centre in Tampere University Hospital in Tampere, Finland. We calculated the construct validity of the questionnaire by calculating the coefficients between the two measures and used Cronbach's alpha to establish the internal consistency. The FAQLQ-PF showed strong correlations with domain structure and internal consistency, based on Spearman's correlations (rho) for the HRQoL questions, FAIM questions and FAIM mean values. The total questionnaire score correlated significantly with the mean FAIM (rho = 0.95, p < 0.001) and individual FAIM questions. The FAQLQ-PF and domains had good or excellent internal consistency (Cronbach's alpha >0.70). The Finnish FAQLQ-PF demonstrated good construct validity and excellent internal consistency for measuring food allergy HRQoL in children under age 13 years.

Clinical Value of Progressive Nutritional Support Nursing in Uremic Patients Undergoing Hemodialysis

Uremia not only involves the accumulation of small molecules of uremic solutes in plasma but also ecological dysregulation of the gut microbiota. At present, hemodialysis is the preferred method for clinical management of uremic patients to avoid complications such as intestinal diseases caused by intestinal flora disturbances. Herein, we have attempted to clarify the clinical value of probiotics in progressive nutritional support nursing for uremic hemodialysis patients. One hundred and thirty-six uremic patients undergoing hemodialysis in our hospital between October 2021 and October 2022 were divided into experimental and control groups. The control group underwent conventional nursing care, whereas the experimental group underwent progressive nutritional support nursing (intervention group). After intervention, the visual analogue scale scores of the EuroQoL-5 Dimension Questionnaire in the experimental group were elevated relative to those in the controls (P &lt; 0.05). The health-related quality of life questions that included creatinine clearance rate, urea nitrogen clearance rate, body mass index, and albumin were higher in the experimental group than controls, whereas the white blood cell count in the experimental group was lower than controls (P &lt; 0.05). Furthermore, the total complication rate in the experimental group was lower than the control group (P &lt; 0.05). In summary, applying progressive nutritional support nursing to uremic patients can improve clinical indicators and reduce the incidence of complications.

External Validation of the European Spine Study Group-International Spine Study Group Calculator Utilizing a Single Institutional Experience for Adult Spinal Deformity Corrective Surgery.

The International Spine Study Group (ISSG) and the European Spine Study Group (ESSG) developed an adult spinal deformity (ASD) risk calculator based on one of the most granular, prospective ASD databases. The calculator utilizes preoperative radiographic, surgical, and patient-specific variables to predict patient-reported outcomes and complication rates at 2 years. Our aim was to assess the ISSG-ESSG risk calculator's usability in a single-institution ASD population. Frail ([F], 0.3 > 0.5) ASD patients were isolated in a single-center ASD database. Basic demographics were assessed via χ 2 and t tests. Each F patient was inputted into the ESSG risk calculator to identify individual predictive rates for postoperative 2-year health-related quality of life questions (HRQL) outcomes and major complications. These calculated predicted outcomes were analyzed against those identified from the ASD database in order to validate the calculator's predictability via Brier scores. A score closer to 1 meant the ISSG-ESSG calculator was not predictive of that specific outcome. A score closer to 0 meant the ISSG-ESSG calculator was a predictive tool for that factor. A total of 631 ASD patients were isolated (55.8 ± 16.8 years, 26.68 kg/m2, 0.95 ± 1.3 Charlson Comorbidity Index). Of those patients, 7.8% were frail. Fifty percent of frail patients received an interbody fusion, 58.3% received a decompression, and 79.2% underwent osteotomy. Surgical details were as follows: mean operative time was 342.9 ± 94.3 minutes, mean estimated blood loss was 2131.82 ± 1011 mL, and average length of stay was 7.12 ± 2.5 days. The ISSG-ESSG calculator predicted the likelihood of improvement for the following HRQL's: Oswestry Disability Index (ODI) (86%), Scoliosis Research Society (SRS)-22 mental health (71.1%), SRS-22 total (87.6%), and major complication (53.4%). The single institution had lower percentages of improvement in ODI (24.6%), SRS-22 mental health (21.3%), SRS-22 total (25.1%), and lower presence of major complication (34.8%). The calculated Brier scores identified the calculator's predictability for each factor was as follows: ODI (0.24), SRS-22 mental health (0.21), SRS-22 total (0.25), and major complication (0.28). All of the variables had low Brier scores, indicating that the ISSG-ESSG calculator can be used as a predictive tool for ASD frail patients.

The impact of childhood sexual abuse and adverse childhood experiences on adult health related quality of life

BackgroundAdverse childhood experiences (ACEs) have been shown to be associated with adult physical, psychological, and socioeconomic well-being, indicative of poor health-related quality of life (HRQoL). However, the association between child sexual abuse (CSA) and adult HRQoL, independent of other ACEs, has been less well examined. ObjectivesTo examine associations between self-reported CSA, including the nature of CSA, and adult HRQoL. ParticipantsData are from 10,624 respondents to CSA and HRQoL questions on the 2015 Texas Behavioral Risk Factor Surveillance System survey. MethodsAnalyses included chi square and t-tests to compare sociodemographic and HRQoL differences among those with and without history of CSA. Multivariable logistic regressions were used to evaluate associations between nature of CSA and HRQoL, controlling for covariates. ResultsThe prevalence of self-reported CSA in the sample was 10.3%. Compared to the non-exposed group, individuals exposed to CSA were more likely to report their general health as poor (AOR, 1.51; 95% CI, 1.09–2.09), report 14 or more physical unhealthy days (AOR, 1.46; 95% CI, 1.06–2.02), 14 or more mental unhealthy days (AOR, 1.86; 95% CI, 1.30–2.64), and 14 or more activity limitation days (AOR, 2.22; 95% CI, 1.58–3.10) in a month. HRQoL outcomes were worse for respondents who reported being forced to have sex as a child compared with those who reported being touched or forced to touch someone. ConclusionsSelf-reported CSA is associated with lower HRQoL. The association varies by the nature of reported sexual abuse. Understanding the long-term impacts of CSA can inform adult treatment options and policies to prevent and treat CSA.

Impact of the COVID-19 pandemic on physical and mental health among individuals with primary immunodeficiency: results of a nationwide survey

The swiftly spreading COVID-19 pandemic may differentially affect individuals with primary immunodeficiencies (PIDs), who have variable infection risk, immune-dysregulation and report worse health-related quality of life (HRQoL) than the general population. Our objective was to assess the impact of COVID-19 on healthcare access, physical and mental health among adults with PIDs. Using data from the ongoing Immune Deficiency Foundation longitudinal surveys [April-June 2020 (IRB exempt)] on individuals with PIDs that opted-in [∼9% response-rate (2086/ 22,341 emails)], we included adults with available PROMIS global health/ HRQoL questions. New healthcare access problems during COVID-19 (immunoglobulin replacement (IgRT) delays, location/ product changes, medication issues or missed appointments) and resulting negative impact on physical/ mental health were analyzed using Chi-square (Fisher’s exact)/ t-tests/ Mann-Whitney tests. Of the 565 adults included (∼30% of adults that opted-in), majority were females [86% (485/561)] and antibody defects were the most common diagnosis [96% (543/565)]; 90% (507/565) on IgRT. While 63% (359/565) reported healthcare access problems, IgRT issues were infrequent [4% (23/565)]. Mean PROMIS global physical (39.6) and mental health scores (43.5) were below the national average (p <0.001) (longitudinal follow-up ongoing). Individuals with healthcare access problems more often reported a moderate-severe negative impact on their physical and mental health vs. those without access issues [84% (103/123) vs 58% (250/428), p< 0.01 and 70% (204/291) vs 57% (149/260), p< 0.01 respectively]. Healthcare access issues are common during COVID-19 and negatively impact physical and mental health among individuals with PIDs providing insight into potentially modifiable factors.

Unraveling the Heterogeneity of Sarcoma Survivors' Health-Related Quality of Life Regarding Primary Sarcoma Location: Results from the SURVSARC Study.

Simple SummarySarcomas are a rare group of heterogenous tumors that can develop anywhere in the body. Currently, studies on health-related quality of life (HRQoL) focus on sarcomas of the arm and leg or have too small sample sizes to examine the heterogeneity between different sarcoma locations, leading to limited insight into HRQoL of survivors with specific sarcoma locations. The aim of this study was to assess differences in HRQoL and examine treatment-specific HRQoL issues per sarcoma location. We found, in a population of 1099 sarcoma survivors, different patterns of HRQoL according to primary sarcoma location and a high number of additional, unique treatment-specific HRQoL issues per location, which were not captured with the general HRQoL questionnaire used in cancer patients. This indicates that the currently used HRQoL measures are too generic to capture all sarcoma-related issues, emphasizing the necessity for a comprehensive sarcoma-specific HRQoL measurement strategy.Sarcoma patients experience physical and psychological symptoms, depending on age of onset, subtype, treatment, stage, and location of the sarcoma, which can adversely affect patients’ health-related quality of life (HRQoL). This study aimed to unravel the heterogeneity of sarcoma survivors’ HRQoL regarding primary sarcoma location. A cross-sectional study was conducted among Dutch sarcoma survivors (N = 1099) aged ≥18, diagnosed 2–10 years ago. Primary sarcoma locations were head and neck, chest, abdominal including retroperitoneal, pelvis including urogenital organs, axial skeleton, extremities (upper and lower), breast, skin and other locations. The European Organization for Research and Treatment of Cancer—Quality of Life Questionnaire (EORTC QLQ)-C30 was used to measure HRQoL accompanied by treatment-specific HRQoL questions. Sociodemographic and clinical characteristics were collected from the Netherlands Cancer Registry. Axial skeleton sarcomas had the lowest functioning levels and highest symptoms compared to other locations. Skin sarcomas had the highest functioning levels and lowest symptoms on most scales. Bone sarcomas scored worse on several HRQoL domains compared to soft tissue sarcomas. High prevalence of treatment-specific HRQoL issues were found per location. In conclusion, sarcomas can present everywhere, which is reflected by different HRQoL outcomes according to primary sarcoma location. The currently used HRQoL measure lacks treatment-specific questions and is too generic to capture all sarcoma-related issues, emphasizing the necessity for a comprehensive sarcoma-specific HRQoL measurement strategy.

Comparison of quality of life in patients who underwent mechanical mitral valve replacement: star GK vs SJM

BackgroundWe want to compare the impact on health-related quality of life (HRQoL) between the Star GK and the SJM valve in the Chinese population.MethodsWe retrospectively enrolled a total of 172 patients who had undergone mechanical mitral valve replacement (MVR) (SJM valve in 87 patients and Star GK valve in 85 patients) at our institution from January 2013 to December 2015. We measured the sound pressure level, and used 2 self-administered questionnaires and the Chinese version of SF-36 to measure the HRQoL and valve-specific questions to evaluate patient anxiety.ResultsThe Star GK group and the SJM group were similar in age, gender, body surface area, diameter of the implanted valve, underlying disease and current median NYHA class. Regarding the valve sound pressure perceived 1 year after operation, the SJM valve was slightly quieter than the Star GK valve, but the sound pressures of the two valves showed no significant differences. No significant differences in any of the eight subscales of the SF-36 were found between the two groups.ConclusionsThe present study suggests that the Star GK valve is similar to the SJM valve in its impact on HRQoL and audibility of mechanical sound in the Chinese population.

Development and Reliability of an Appropriateness and Prioritization Instrument for Eye Care Practice: A Modified Delphi Process

ABSTRACTPurpose: To modify the Western Canada Waiting List Project (WCWLP) cataract prioritization criteria into measurement instruments for assessing appropriateness and prioritization emphasizing health-related quality of life (HRQoL) and examining reliability.Methods: A modified Delphi process was conducted using two rounds of online surveys and a face-to-face meeting. A panel of eye care experts rated the relevancy of criteria on a 5-point scale. Patient narratives highlighted the patient experience. A G-theory framework was used to assess inter- and intra-rater agreement using the criteria.Results: Nine Ophthalmologists, three Optometrists, and one General Practitioner participated in the modified Delphi process. Consensus to include/exclude was reached on all criteria. Seventeen criteria were included and 16 were excluded. The most significant changes were related to the categorization of comorbidities and expansion of HRQoL questions. The overall reliability was good (ϕ = 0.852).Conclusion: The WCWLP was modified to include appropriateness and to better reflect HRQoL. Having achieved consensus and demonstrated reliability of the criteria, the next step is to estimate weights for criteria and to validate against patient health outcomes data.

Support group utilization and impact for patients with hidradenitis suppurativa

Support group utilization and impact for patients with hidradenitis suppurativa

Health related quality of life (HRQoL) among Aboriginal South Australians: a perspective using survey-based health utility estimates

BackgroundAustralian health surveys occasionally include health utility measures in describing health related quality of life (HRQoL) across the general population. However, the HRQoL of specific population groups, such as Aboriginal and Torres Strait Islander (respectfully referred to as Aboriginal), are poorly understood. Our analysis describes HRQoL utility among Aboriginal South Australians by examining the characteristics of respondents completing HRQoL questioning, the relationship between HRQoL and respondent characteristics, then considers reported HRQoL utility in the wider population context.MethodsPopulation weighted and self-reported HRQoL was measured using SF-6D, as derived from the SF-12 version 2, in the South Australian Aboriginal Health Survey’s face to face interviews with 399 respondents aged 15 or more in 2010/11.ResultsMean HRQoL utility was 0.77 (95% CIs 0.76–0.79) with marked variations by gender (females 0.03, 95% CIs 0.00–0.06 lower than males), age (with ages 55 or more 0.08, 95% CIs 0.02–0.14 lower than 15–35 years) and number of chronic health conditions (3 or more conditions 0.14, 95% CIs 0.09–0.19 lower than those with 0 conditions). A pattern of response to HRQoL questions was also evident. Response was less likely among respondents speaking Aboriginal languages at home, living in non-urban settings, and experiencing multiple chronic health conditions.ConclusionsThe SF-6D provides useful information on the HRQoL of Aboriginal South Australians. However, non-completion was pronounced among respondents speaking traditional languages and experiencing more chronic health conditions. Improved participation of vulnerable and health compromised respondents through culturally safe and relevant self-reporting HRQoL utility instruments is needed.

Patient Preferences for Pain Management in Advanced Cancer: Results from a Discrete Choice Experiment.

Pain from advanced cancer remains prevalent, severe and often under-treated. The aim of this study was to conduct a discrete choice experiment with patients to understand their preferences for pain management services and inform service development. Focus groups were used to develop the attributes and levels of the discrete choice experiment. The attributes were: waiting time, type of healthcare professional, out-of-pocket costs, side-effect control, quality of communication, quality of information and pain control. Patients completed the discrete choice experiment along with clinical and health-related quality of life questions. Conditional and mixed logit models were used to analyse the data. Patients with cancer pain (n = 221) and within palliative care services completed the survey (45% were female, mean age 64.6 years; age range 21-92 years). The most important aspects of pain management were: good pain control, zero out-of-pocket costs and good side-effect control. Poor or moderate pain control and £30 costs drew the highest negative preferences. Respondents preferred control of side effects and provision of better information and communication, over access to certain healthcare professionals. Those with lower health-related quality of life were less willing to wait for treatment and willing to incur higher costs. The presence of a carer influenced preferences. Outcome attributes were more important than process attributes but the latter were still valued. Thus, supporting self-management, for example by providing better information on pain may be a worthwhile endeavour. However, service provision may need to account for individual characteristics given the heterogeneity in preferences.

The prognostic value of pre-diagnosis health-related quality of life on survival: a prospective cohort study of older Americans with lung cancer.

Health-related quality of life (HRQOL) after cancer diagnosis is prognostic for overall survival (OS). However, no studies have assessed if HRQOL before diagnosis is predictive for OS. The objective of this study was to determine the association between pre-lung cancer diagnosis HRQOL and OS. Our prospective cohort study used surveillance, epidemiology, and end results linked to the Medicare Health Outcomes Survey. We included 6290 individuals 65years or older diagnosed with incident lung cancer from 1998 to 2013. We assessed the prognostic value of (1) short-form 36 summary component and domain-specific scores, (2) activities of daily living (ADL), and (3) two global HRQOL questions. Cox-proportional hazards models were used to examine associations between HRQOL and OS, adjusting for demographics, comorbid conditions, and clinical characteristics. Worse pre-diagnosis HRQOL was significantly associated with greater risk of death across HRQOL measures. An above average physical or mental component summary score was associated with 16 and 24% decreases in the hazard of death, respectively (p < 0.0001). Being unable to perform ADLs, such as bathing oneself, was associated with an 89% increased hazard of death (p < 0.0001). Reporting "poor" versus "excellent" health was associated with a 74% increase in the hazard of death (p < 0.0001). This population-based study reinforces the importance of self-reported health status as a predictor for OS. Routine HRQOL screening may identify patients who could benefit from early interventions to improve HRQOL. Future studies should explore associations between changes in HRQOL before and after cancer diagnosis and OS.

Development and Psychometric Evaluation of the MetabQoL 1.0: A Quality of Life Questionnaire for Paediatric Patients with Intoxication-Type Inborn Errors of Metabolism.

This study is part of the "European network and registry for intoxication type metabolic diseases" (E-IMD) project. Intoxication-type inborn errors of metabolism (IT-IEM) such as urea cycle disorders (UCD) and organic acidurias (OA) have a major impact on patients' lives. Patients have to adhere to strict diet and medication and may suffer from metabolic crises and neurocognitive impairment. Disease-specific health-related quality of life (HrQoL) assessment questionnaires are the method of choice to estimate the subjective burden of a disease. To date, no such instrument is available for IT-IEM. Disease-specific patient- and parent-reported HrQoL questions were constructed in German based on focus group interviews with patients and parents. Questionnaires for patients from 8 to 18years were piloted with 14 participants (n=9 children and adolescents, n=5 parents) by cognitive debriefing and tested psychometrically with 80 participants (n=38 patients, n=42 parents) for item characteristics, validity, and reliability to construct the first version of a disease-specific HrQoL questionnaire. Twenty-eight questions were selected based on item descriptives. Scales of self- and proxy questionnaires demonstrated acceptable to excellent reliability in terms of internal consistency (Cronbach's α=0.70-0.93). Scales and total scores correlated with those of generic HrQoL questionnaires, showing convergent validity. The MetabQoL 1.0 questionnaire exhibits sound psychometric properties and is a promising step towards assessing patient-reported outcomes in research and clinical practice. It provides a solid basis for translation into other languages and further elaboration and psychometric exploration in larger populations.

The Association between Vitamin D and Health-Related Quality of Life in Korean Adults.

BackgroundWe examined the relationship between vitamin D status and health-related quality of life, and explored other related factors in the general Korean population.MethodsWe used data from the 2007–2012 Korea National Health and Nutrition Examination Survey on 14,104 adults, aged 20–49 years, who had consented to serum vitamin D measurement and answered health-related quality of life questions. EuroQol-5 was used for measurement. Serum vitamin D levels were measured at intervals of 0–9.99, 10–19.99, 20–29.99, and ≥30 ng/mL.ResultsParticipants with higher serum vitamin D (serum 25-hydroxyvitamin D) levels were significantly less likely to report problems with depression and anxiety. After adjustment for age, gender, income level, education level, marital status, alcohol consumption, smoking status, and the existence of depressive disorders, the odds ratio for reporting a problem with depression and anxiety was 0.60 (95% confidence interval [CI], 0.39–0.91). The odds ratio for the prevalence of any problem was 0.69 (95% CI, 0.53–0.89) before adjustment, but was not statistically significant after adjustment. No significant associations were observed for problems with mobility, self-care, usual activity, or pain and discomfort.ConclusionThis is the first study to examine the associations between vitamin D and health-related quality of life for the general Korean population. Vitamin D status was not significantly associated with the dimensions of EuroQol-5 except for depression and anxiety problems.

Development of a disease-specific health-related quality of life (HRQoL) questionnaire intended to be used in conjunction with the general European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire (QLQ) in renal cell carcinoma patients

Background. Studying health-related quality of life (HRQoL) following cancer treatment has become part of a growing number of standardized treatment protocols. The European Organization for Research and Treatment of Cancer (EORTC) has developed HRQoL questionnaires aimed at cancer patients. A disease-specific part is not available for renal cell carcinoma (RCC) patients, and the present aim was to develop an EORTC-compatible RCC-specific HRQoL questionnaire.Material and methods. In total 413 RCC patients were treated with radical or partial nephrectomies in Western Norway during the period from 1997 to 2010. Three hundred and nine patients with histologically proven cancer were still alive at the inclusion time point and 185 RCC patients (71% response rate) returned the questionnaires. We determined HRQoL by the EORTC-QLQ C30 questionnaire. We also asked 13 candidates questions aimed at constituting a disease-specific part. Furthermore, we tested parts of personality by the Eysenck Personality Inventory and coping by the COPE questionnaire. Given tumor treatment, TNM stage, alcohol consumption level and smoking levels were also determined from the hospital records.Results. A factor analysis showed that five factors were formed: one general symptomatic, one general functional, one with disease-specific questions (flank pain, blood in the urine, flank edema, urinary tract infection), one about sexuality and one about weight loss or gain. Ten RCC-specific HRQoL questions were derived from a factor analysis, including four questions related particularly to pain, mobility and social functioning, also representing a short version of the EORTC C30. The psychometric properties and the relation to other psychological and clinical variables were further determined to be satisfactory.Conclusions. The suggested disease-specific EORTC-QLQ-style RCC10 version adds important information about the HRQoL of RCC patients, providing additional apparent value to the general questionnaire and personality variables, as well as being psychometrically satisfactory. The questionnaire has a potential as a “stand alone” HRQoL questionnaire among RCC patients.

Development of the Alopecia Areata Symptom Impact Scale

The existing literature on alopecia areata (AA) clearly demonstrates patients' concerns related to physical symptoms, emotional well-being, mental health, social functioning, and other dimensions of daily functioning. Although questionnaires such as the Skindex-16 and the Dermatology Life Quality Index have been used, these questionnaires were validated for skin conditions other than AA as a chronic condition. The goals of this study are to develop a measure of quality of life, symptoms, and their impact for patients with AA called the Alopecia Areata Symptom Impact Scale (AASIS) and to provide psychometric evidence for its use. We used data from 1,400 patients from the National Alopecia Areata Registry together with clinical experts' reviews and quantitative approaches. The preliminary version of the AASIS with 13 items was administered to about 210 patients with AA. Results indicated that the AASIS measures three underlying constructs related to AA. These dimensions were impact of AA, hair loss, and physical skin symptoms. The internal consistency reliabilities of these subscales are 0.93, 0.86, and 0.81, respectively. Cognitive debriefing results showed that patients find the AASIS items easy to understand, clear, and concise. Preliminary evidence suggests that the AASIS is a reliable and valid measure of the symptoms and their impact in patients with AA.

Associations between scores of psychosomatic health symptoms and health-related quality of life in children and adolescents

BackgroundThe aims of the present study are to investigate whether there are differences in health-related quality of life (HRQoL) between girls and boys in two different age groups, to study how much of children’s variance in HRQoL can be explained by common psychosomatic health symptoms, and to examine whether the same set of psychosomatic symptoms can explain differences in HRQoL, both between girls and boys and between older and younger school children.MethodsA cross-sectional study was conducted of 253 children, 99 of ages 11–12 years (n=51 girls, n=48 boys) and 154 of ages 15–16 years (n=82 girls, n=72 boys), in Swedish schools. The KIDSCREEN-52 instrument, which covers 10 dimensions of HRQoL and additional questions about psychosomatic health symptoms, were used. Analyses of variance were conducted to investigate differences between the genders and age groups, and in interaction effects on the KIDSCREEN-52 dimensions. Regression analyses were used to investigate the impacts of psychosomatic symptoms on gender and age group differences in HRQoL.ResultsBoys rated themselves higher than girls on the KIDSCREEN dimensions: physical and psychological well-being, moods and emotions, self-perception, and autonomy. Main effects of age group were found for physical well-being, psychological well-being, moods and emotions, self-perception, autonomy, and school environment, where younger children rated their HRQoL more highly than those aged 15–16 years. Girls rated their moods and emotions dramatically lower than boys in the older age group, but the ratings of emotional status were more similar between genders at younger ages. Psychosomatic symptoms explained between 27% and 50% of the variance in the children’s HRQoL. Sleeping difficulties were a common problem for both girls and boys. Depression and concentration difficulties were particularly associated with HRQoL among girls whereas stomach aches were associated with HRQoL among boys.ConclusionsGirls and adolescents experience poorer HRQoL than boys and younger children, but having psychosomatic symptoms seem to explain a substantial part of the variation. Strategies to promote health among school children, in particular to alleviate sleep problems among all children, depression and concentration difficulties among girls, and stomach aches among boys, are of great importance.

Health-related quality of life in rural children living in four European countries: the GABRIEL study

Measuring children's health-related quality of life (HRQOL) is of growing importance given increasing chronic diseases. By integrating HRQOL questions into the European GABRIEL study, we assessed differences in HRQOL between rural farm and non-farm children from Germany, Austria, Switzerland and Poland to relate it to common childhood health problems and to compare it to a representative, mostly urban German population sample (KIGGS). The parents of 10,400 school-aged children answered comprehensive questionnaires including health-related questions and the KINDL-R questions assessing HRQOL. Austrian children reported highest KINDL-R scores (mean: 80.9; 95% CI [80.4, 81.4]) and Polish children the lowest (74.5; [73.9, 75.0]). Farm children reported higher KINDL-R scores than non-farm children (p=0.002). Significantly lower scores were observed in children with allergic diseases (p<0.001), with sleeping difficulties (p<0.001) and in overweight children (p=0.04). The German GABRIEL sample reported higher mean scores (age 7-10years: 80.1, [79.9, 80.4]; age 11-13years: 77.1, [74.9, 79.2]) compared to the urban KIGGS study (age 7-10years: 79.0, [78.7-79.3]; age 11-13years: 75.1 [74.6-75.6]). Socio-demographic or health-related factors could not explain differences in HRQOL between countries. Future increases in chronic diseases may negatively impact children's HRQOL.