Readability estimates for commonly used health-related quality of life surveys.
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ABSTRACT:
SUBMITTER: Paz SH
PROVIDER: S-EPMC2724639 | biostudies-other | 2009 Sep
REPOSITORIES: biostudies-other
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Project description:Self-report measures are central in capturing young people's perspectives on mental health concerns and treatment outcomes. For children and adolescents to complete such measures meaningfully and independently, the reading difficulty must match their reading ability. Prior research suggests a frequent mismatch for mental health symptom measures. Similar analyses are lacking for measures of Quality of Life (QoL). We analysed the readability of 13 commonly used QoL self-report measures for children and adolescents aged 6 to 18 years by computing five readability formulas and a mean reading age across formulas. Across measures, the mean reading age for item sets was 10.7 years (SD = 1.2). For almost two-thirds of the questionnaires, the required reading age exceeded the minimum age of the target group by at least one year, with an average discrepancy of 3.0 years (SD = 1.2). Questionnaires with matching reading ages primarily targeted adolescents. Our study suggests a frequent mismatch between the reading difficulty of QoL self-report measures for pre-adolescent children and this group's expected reading ability. Such discrepancies risk undermining the validity of measurement, especially where children also have learning or attention difficulties. Readability should be critically considered in measure development, as one aspect of the content validity of self-report measures for youth.
| S-EPMC9367855 | biostudies-literature
Project description:Background and objectivesValuing children's health states for use in economic evaluations is globally relevant and is of particular relevance in jurisdictions where a cost-utility analysis is the preferred form of analysis for decision making. Despite this, the challenges with valuing child health mean that there are many remaining questions for debate about the approach to elicitation of values. The aim of this paper was to identify and describe the methods used to value children's health states and the specific issues that arise in the use of these methods.MethodsWe conducted a systematic search of electronic databases to identify studies published in English since 1990 that used preference elicitation methods to value child and adolescent (under 18 years of age) health states. Eligibility criteria comprised valuation studies concerning both child-specific patient-reported outcome measures and child health states defined in other ways, and methodological studies of valuation approaches that may or may not have yielded a value set algorithm.ResultsA total of 77 eligible studies were identified from which data on country setting, aims, condition (general population or clinically specific), sample size, age of respondents, the perspective that participants were asked to adopt, source of values (respondents who completed the preference elicitation tasks) and methods questions asked were extracted. Extracted data were classified and evaluated using narrative synthesis methods. The studies were classified into three groups: (1) studies comparing elicitation methods (n = 30); (2) studies comparing perspectives (n = 23); and (3) studies where no comparisons were presented (n = 26); selected studies could fall into more than one group. Overall, the studies varied considerably both in methods used and in reporting. The preference elicitation tasks included time trade-off, standard gamble, visual analogue scaling, rating/ranking, discrete choice experiments, best-worst scaling and willingness to pay elicited through a contingent valuation. Perspectives included adults' considering the health states from their own perspective, adults taking the perspective of a child (own, other, hypothetical) and a child/adolescent taking their own or the perspective of another child. There was some evidence that children gave lower values for comparable health states than did adults that adopted their own perspective or adult/parents that adopted the perspective of children.ConclusionsDifferences in reporting limited the conclusions that can be formed about which methods are most suitable for eliciting preferences for children's health and the influence of differing perspectives and values. Difficulties encountered in drawing conclusions from the data (such as lack of consensus and poor reporting making it difficult for users to choose and interpret available values) suggest that reporting guidelines are required to improve the consistency and quality of reporting of studies that value children's health using preference-based techniques.
| S-EPMC9270310 | biostudies-literature
Project description:Psychotic experiences (PEs) are associated with a range of mental and physical disorders, and disability, but little is known about the association between PEs and aspects of health-related quality of life (HRQoL). We aimed to investigate the association between PEs and five HRQoL indicators with various adjustments. Using data from the WHO World Mental Health surveys (n = 33,370 adult respondents from 19 countries), we assessed for PEs and five HRQoL indicators (self-rated physical or mental health, perceived level of stigma (embarrassment and discrimination), and social network burden). Logistic regression models that adjusted for socio-demographic characteristics, 21 DSM-IV mental disorders, and 14 general medical conditions were used to investigate the associations between the variables of interest. We also investigated dose-response relationships between PE-related metrics (number of types and frequency of episodes) and the HRQoL indicators. Those with a history of PEs had increased odds of poor perceived mental (OR = 1.5, 95% CI = 1.2-1.9) and physical health (OR = 1.3, 95% CI = 1.0-1.7) after adjustment for the presence of any mental or general medical conditions. Higher levels of perceived stigma and social network burden were also associated with PEs in the adjusted models. Dose-response associations between PE type and frequency metrics and subjective physical and mental health were non-significant, except those with more PE types had increased odds of reporting higher discrimination (OR = 2.2, 95% CI = 1.3-3.5). Our findings provide novel insights into how those with PEs perceive their health status.
| S-EPMC6371397 | biostudies-literature
Project description:ObjectiveAssessment of the readability and quality of online health information regarding parathyroidectomy.Study designCross-sectional analysis.SettingWebsites providing patient-oriented health information regarding parathyroidectomy obtained via the Google search engine.MethodsThe top 75 Google search results for "parathyroidectomy,""parathyroid surgery," and "parathyroid gland removal" were reviewed. Websites were categorized by website type and country of origin. Readability was assessed by Flesch-Kincaid Grade Level and Simple Measure of Gobbledygook. Website quality was assessed per JAMA benchmark criteria and the DISCERN instrument.ResultsA total of 74 unique websites were evaluated. The mean readability of the assessed websites exceeded the recommended sixth-grade reading level on the Flesch-Kincaid Grade Level and Simple Measure of Gobbledygook (P < .001). Readability did not vary significantly by website type. Websites originating from the United Kingdom were significantly more readable than those from the United States. The majority of assessed websites were of poor quality (n = 42, 56.8%) on assessment based on the DISCERN instrument. Quality varied significantly by website category on the JAMA benchmark criteria (P < .001) and DISCERN score (P = .049) with commercial websites receiving the highest scores. DISCERN score also varied significantly by country of origin (P = .036) with UK sites receiving highest mean DISCERN scores.ConclusionOnline health information regarding parathyroidectomy is largely of poor quality and is poorly readable for many patients. Institutions utilizing well-defined guidelines for development of patient educational resources may provide online health information of greater quality and readability.
| S-EPMC9597036 | biostudies-literature
Project description:Despite extensive data on health-related quality of life (HRQOL) among cancer survivors, we do not yet have an estimate of the percentage of survivors with poor mental and physical HRQOL compared with population norms. HRQOL population means for adult-onset cancer survivors of all ages and across the survivorship trajectory also have not been published.Survivors (N = 1,822) and adults with no cancer history (N = 24,804) were identified from the 2010 National Health Interview Survey. The PROMIS® Global Health Scale was used to assess HRQOL. Poor HRQOL was defined as 1 SD or more below the PROMIS® population norm.Poor physical and mental HRQOL were reported by 24.5% and 10.1% of survivors, respectively, compared with 10.2% and 5.9% of adults without cancer (both P < 0.0001). This represents a population of approximately 3.3 million and 1.4 million U.S. survivors with poor physical and mental HRQOL. Adjusted mean mental and physical HRQOL scores were similar for breast, prostate, and melanoma survivors compared with adults without cancer. Survivors of cervical, colorectal, hematologic, short-survival, and other cancers had worse physical HRQOL; cervical and short-survival cancer survivors reported worse mental HRQOL.These data elucidate the burden of cancer diagnosis and treatment among U.S. survivors and can be used to monitor the impact of national efforts to improve survivorship care and outcomes.We present novel data on the number of U.S. survivors with poor HRQOL. Interventions for high-risk groups that can be easily implemented are needed to improve survivor health at a population level.
| S-EPMC3645867 | biostudies-literature
Project description:The scientific debate following the initial formulation of the "bad luck" hypothesis in cancer development highlighted how measures based on analysis of variance are inappropriately used for risk communication. The notion of "explained" variance is not only used to quantify randomness, but also to quantify genetic and environmental contribution to disease in heritability coefficients. In this paper, we demonstrate why such quantifications are generally as problematic as bad luck estimates. We stress the differences in calculation and interpretation between the heritability coefficient and the population attributable fraction, the estimated fraction of all disease events that would not occur if an intervention could successfully prevent the excess genetic risk. We recommend using the population attributable fraction when communicating results regarding the genetic contribution to disease, as this measure is both more relevant from a public health perspective and easier to understand.
| S-EPMC6861200 | biostudies-literature
Project description:Introduction Life-space and frailty are closely linked to health-related quality of life and understanding their inter-relationship could indicate potential intervention targets for improving quality of life. We set out to examine the relationship between frailty and life-space and their relative impact on quality of life measures. Methods Using cross-sectional data from a population-representative cohort of people aged ≥ 70 years, we assessed quality of life with the EuroQol Health Index tool (5-levels) (EQ-5D-5L). We also undertook a life-space assessment and derived a frailty index. Linear regression models estimated EQ-5D-5L scores (dependent variable) using life-space assessment, frailty index and interactions between them. All models were adjusted by age, sex, lifestyle, and social care factors. Results A higher EQ-5D Index was associated with higher life-space (0.02 per life-space assessment score, 95%CI: 0.01 to 0.03, p < 0.01) and decreasing frailty (-0.1 per SD, 95%CI: -0.1 to -0.1, p < 0.01). There was evidence of an interaction between life-space and frailty, where the steepest gradient for life-space and EQ-5D was in those with the highest frailty (interaction term = 0.02 per SD of frailty, 95%CI: 0.01 to 0.03, p < 0.01). Conclusion Individuals with the highest frailty were twice as likely to have higher quality of life in association with a larger life-space. Interventions designed to improve quality of life in frail older people could focus on increasing a person’s life-space. Supplementary Information The online version contains supplementary material available at 10.1186/s12877-022-03355-2.
| S-EPMC9356461 | biostudies-literature
Project description:BackgroundThe quality of life of persons living with inflammatory bowel disease (IBD) is impacted by the physical and psychosocial burdens of disease, as well as by their satisfaction with the quality of care they receive. We sought to better understand (1) the drivers of satisfaction with treatment, including treatment goals, treatment selection, and attributes of patient/health care professional (HCP) interactions, and (2) how IBD symptoms affect aspects of daily life and overall quality of life.MethodsTwo online questionnaires were accessed via MyCrohnsAndColitsTeam.com. The Treatment Survey assessed desired treatment outcomes, past and present therapies, and experiences with the patient's primary treating HCP. The Quality of Life survey assessed respondents' most problematic IBD symptoms and their influence on family and social life, work, and education. Respondents had Crohn's disease (CD) or ulcerative colitis (UC), were 19 years or older, and resided in the United States. All responses were anonymous.ResultsThe Treatment Experience survey was completed by 502 people (296 CD, 206 UC), and the Quality of Life survey was completed by 302 people (177 CD, 125 UC). Reduced pain, diarrhea, disease progression, and fatigue were the most desired goals of treatment. Biologics and 5-aminosalicylates were reported as a current or past treatment by the greatest proportion of patients with CD and UC, respectively. A numerically lower proportion of respondents with UC than CD reported use of biologic or small molecule therapy; conversely, a numerically greater proportion of respondents with UC than CD reported these drugs to be very or extremely effective. The HCP was key in the decision to switch to, and in the selection of, biologic or small molecule therapy. Overall satisfaction with an HCP was greatly driven by the quality and quantity of the communication and of the time spent with the HCP. Troublesome abdominal symptoms most impacted aspects of social and family life. Emotional challenges associated with IBD were experienced by most respondents.ConclusionsTreatment goals of respondents seem to align with HCPs overall treatment goals, including control of gastrointestinal symptoms and prevention of disease progression. Persons with UC might be offered biologic and small molecule therapies less often, despite reported high efficacy by users. Feeling heard and understood by the HCP are key drivers of treatment satisfaction. Quality communication in the patient/HCP relationship enables a better understanding of the patients' goals, disease burden, and emotional needs, which are all key factors to consider when developing a personalized and comprehensive treatment plan and optimizing quality of life.
| S-EPMC9802169 | biostudies-literature
Project description:BackgroundTumor immunotherapy is an innovative treatment today, but there are limited data on the quality of immunotherapy information on social networks. Dissemination of misinformation through the internet is a major social issue.ObjectiveOur objective was to characterize the quality of information and presence of misinformation about tumor immunotherapy on internet-based videos commonly used by the Chinese population.MethodsUsing the keyword "tumor immunotherapy" in Chinese, we searched TikTok, Tencent, iQIYI, and BiliBili on March 5, 2022. We reviewed the 118 screened videos using the Patient Education Materials Assessment Tool-a validated instrument to collect consumer health information. DISCERN quality criteria and the JAMA (Journal of the American Medical Association) Benchmark Criteria were used for assessing the quality and reliability of the health information. The videos' content was also evaluated.ResultsThe 118 videos about tumor immunotherapy were mostly uploaded by channels dedicated to lectures, health-related animations, and interviews; their median length was 5 minutes, and 79% of them were published in and after 2018. The median understandability and actionability of the videos were 71% and 71%, respectively. However, the quality of information was moderate to poor on the validated DISCERN and JAMA assessments. Only 12 videos contained misinformation (score of >1 out of 5). Videos with a doctor (lectures and interviews) not only were significantly less likely to contain misinformation but also had better quality and a greater forwarding number. Moreover, the results showed that more than half of the videos contain little or no content on the risk factors and management of tumor immunotherapy. Overall, over half of the videos had some or more information on the definition, symptoms, evaluation, and outcomes of tumor immunotherapy.ConclusionsAlthough the quality of immunotherapy information on internet-based videos commonly used by Chinese people is moderate, these videos have less misinformation and better content. Caution must be exercised when using these videos as a source of tumor immunotherapy-related information.
| S-EPMC10882464 | biostudies-literature
Project description:BACKGROUND: Global research shows a clear transition in health outcomes over the past two decades where improved survival was accompanied by lower health related quality of life (HRQoL) as measured by morbidity and disability. These trends suggest the need to better understand changes in population HRQoL. This paper compares two perspectives on population HRQoL change using burden of disease morbidity estimates from administrative data and self-reports from random and representative population surveys. METHODS: South Australian administrative data including inpatient hospital activity, cancer and communicable disease registrations were used within a Burden of Disease study framework to quantify morbidity as Prevalent Years of Life lived with Disease and injury related illness (PYLD) for 1999 to 2008. Self-reported HRQoL was measured using the Assessment of Quality of Life (AQoL) in face to face interviews with at least 3000 respondents in each of South Australia's Health Omnibus Surveys (HOS) in 1998, 2004 and 2008. RESULTS: Age specific PYLD rates for those aged 75 or more increased by 5.1%. HRQoL dis-utility in this age group also increased significantly and beyond the minimally important difference threshold. Underlying increased dis-utility were greater difficulties in independent living (particularly requiring help with household tasks) and psychological well-being (as influenced by pain, discomfort and difficulty sleeping). CONCLUSIONS: Consistent with increased quantity of life being accompanied by reduced HRQoL, the analysis indicates older people in South Australia experienced increased morbidity in the decade to 2008. The results warrant routine monitoring of health dis-utility at a population level and improvement to the supply and scope of administrative data.
| S-EPMC4243949 | biostudies-literature