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OBJECTIVES: This study aimed to evaluate the psychometric properties of four candidate cognition bolt-on items and their combinations to the EQ-5D-5L. METHODS: Four cognition items (concentration, memory, calculation, and learning) were developed as separate questionnaire items, and were administered with the standard EQ-5D-5L to 640 individuals in a general population survey in China. From the 4 items, 11 compound items were constructed, and the 'worse level counts' rule was used to calculate a compound item score. Psychometric performance of the cognition bolt-ons was assessed in terms of informativity, convergent validity, explanatory power, and discriminatory power. RESULTS: The tested four cognition bolt-on items improved the informativity, convergent validity, explanatory power, and discriminatory power of EQ-5D-5L, with calculation and learning yielding better psychometric performance. The compound bolt-on items that coverd a range of cognitive functions demonstrated superior psychometric performance compared to single-aspect bolt-on items, with those items covering calculation and learning resulting in better psychometric performance. CONCLUSION: This study confirmed the validity of the tested cognition bolt-ons in a general Chinese population. It supported the use of a compound bolt-on item covering a range of cognitive functions such as the ability to calculate and learn.
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BACKGROUND: While peripheral nerve blocks (PNBs) are associated with various improved outcomes in patients undergoing total hip or knee arthroplasty (THA/TKA), disparities in PNB utilization have been reported. This study assessed the importance of socioeconomic, demographic, clinical, and hospital determinants in explaining PNB utilization using the population-attributable risk (PAR) framework. Subsequently, we examined the association between PNB use and 3 secondary outcomes: Centers for Medicare and Medicaid Services (CMS)-defined complications, 90-day all-cause readmissions, and length of stay >3 days. METHODS: This retrospective cohort study included 52,926 THA and 94,795 TKA cases from the 5% 2012 to 2021 Medicare dataset. Mixed-effects logistic regression models measured the association between study variables and PNB utilization. Variables of interest were demographic (age, sex), clinical (outpatient setting, diagnosis, prior hospitalizations in the year before surgery, Deyo-Charlson index, obesity, (non)-opioid abuse, smoking), socioeconomic (neighborhood Social Deprivation Index, race and ethnicity) and hospital variables (beds, ownership, region, rurality, resident-to-bed ratio). The model was used for the calculation of variable-specific and variable category-specific PARs (presented in percentages), reflecting the proportion of variation in PNB use explained after eliminating variables (or groups of variables) of interest with all other factors held constant. Subsequently, regression models measured the association between PNB use and secondary outcomes. Associations are presented with odds ratios (ORs) and 95% confidence intervals (95% CIs). RESULTS: Socioeconomic and demographic variables accounted for only a small proportion of variation in PNB use (up to 3% and 7%, respectively). Clinical (THA: 46%; TKA: 34%) and hospital variables (THA: 31%; TKA: 22%) were the primary drivers of variation. In THA, variation by clinical variables was driven by increased PNB use in the inpatient setting (OR, 1.28 [95% CI, 1.07-1.53]) and decreased use in patients with ≥2 prior hospitalizations (OR, 0.72 [95% CI, 0.57-0.90]). Moreover, nonosteoarthritis diagnoses associated with reduced PNB utilization in THA (OR, 0.64 [95% CI, 0.58-0.72]) and TKA (OR, 0.35 [95% CI, 0.34-0.37]).In TKA, PNB use was subsequently associated with fewer complications (OR, 0.82 [95% CI, 0.75-0.90]) and less prolonged length of stay (OR, 0.90 [95% CI, 0.86-0.95]); no association was found for readmissions (OR, 0.98 [95% CI, 0.93-1.03]). In THA, associations did not reach statistical significance. CONCLUSIONS: Among THA and TKA patients on Medicare, large variations exist in the utilization of PNBs by clinical and hospital variables, while demographic and socioeconomic variables played a limited role. Given the consistent benefits of PNBs, particularly in TKA patients, more standardized provision may be warranted to mitigate the observed variation.
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PURPOSE: To determine whether (1) healthcare access at onset of the pandemic and (2) age, gender, socioeconomic status (SES), and pre-existing health status were associated with change in health-related quality-of-life (HRQoL) during the COVID-19 pandemic. The study includes a general population sample of five countries. METHODS: An online questionnaire was administered to respondents from Greece, Italy, the Netherlands, the UK, and the US at the onset of the COVID-19 pandemic between April 22nd and May 5th of 2020, and 1 year later between May 23rd and June 29th of 2021. The questionnaire included questions on demographic background, health status, and HRQoL. The primary outcome was change in HRQoL as measured by the EQ-5D-5L instrument. Specifically, the EQ-5D-5L index and EQ VAS were used. Healthcare access was quantified with regard to the respondent's ease of getting an appointment, waiting time, and opportunity to contact the provider and during analysis dichotomized into "sufficient" versus "insufficient". Linear regression analysis was performed with change in HRQoL as dependent variable and background variables as independent variables. RESULTS: In total, 6,765 respondents completed the second questionnaire. 19.8% of total respondents reported insufficient healthcare access. Respondents with insufficient healthcare had both more improved and deteriorated HRQoL compared to respondents with sufficient healthcare, whose HRQoL remained unchanged. We did not find significant interactions between age, gender, SES and/or chronic disease status with healthcare access at onset of the COVID-19 pandemic. CONCLUSION: Healthcare access was not associated with cumulative differences in change in HRQoL over a 1-year period in strata of age, gender, SES, and chronic disease status.
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OBJECTIVE: To study socio-economic inequalities in patient-reported outcomes in primary hip and knee arthroplasty (THA/TKA) patients for osteoarthritis, using two analytical techniques. METHODS: We obtained data from 44,732 THA and 30,756 TKA patients with preoperative and 12-month follow-up PROMs between 2014 and 2020 from the Dutch Arthroplasty Registry. A deprivation indicator based on neighborhood income, unemployment rate, and education level was linked and categorized into quintiles. The primary outcome measures were the EQ-5D-3L index and Oxford Hip/Knee Score (OHS/OKS) preoperative, at 12-month follow-up, and the calculated change score between these measurements. We contrasted the most and least deprived quintiles using multivariable linear regression, adjusting for patient characteristics. Concurrently, we calculated concentration indices as a non-arbitrary tool to quantify inequalities. RESULTS: Compared to the least deprived, the most deprived THA patients had poorer preoperative (EQ-5D -0.03 (95%CI -0.02, -0.04), OHS -1.26 (-0.99, -1.52)) and 12-month follow-up health (EQ-5D -0.02 (-0.01, -0.02), OHS -0.42 (-0.19, -0.65)), yet higher mean change (EQ-5D 0.02 (0.01, 0.03), OHS 0.84 (0.52, 1.16)). The most deprived TKA patients had similar results. The higher mean change among the deprived resulted from lower preoperative health in this group (confounding). After accounting for this, the most deprived patients had a lower mean change. The concentration indices showed similar inequality effects and provided information on the magnitude of inequalities over the entire socio-economic range. CONCLUSION: The most deprived THA and TKA patients have worse preoperative health, which persisted after surgery. The concentration indices allow comparison of inequalities across different outcomes (e.g., revision risk).
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Artroplastia de Quadril , Artroplastia do Joelho , Osteoartrite do Joelho , Osteoartrite , Humanos , Osteoartrite/cirurgia , Articulação do Joelho/cirurgia , Medidas de Resultados Relatados pelo Paciente , Fatores Socioeconômicos , Qualidade de Vida , Osteoartrite do Joelho/cirurgiaRESUMO
RESEARCH QUESTION: Which patient features predict the time to pregnancy (TTP) leading to term live birth in infertile women diagnosed with polycystic ovary syndrome (PCOS)? DESIGN: Prospective cohort follow-up study was completed, in which initial standardized phenotyping was conducted at two Dutch university medical centres from January 2004 to January 2014. Data were linked to the Netherlands Perinatal Registry to obtain pregnancy outcomes for each participant. All women underwent treatment according to a standardized protocol, starting with ovulation induction as first-line treatment. Predictors of pregnancies (leading to term live births) during the first year after PCOS diagnosis were evaluated. RESULTS: A total of 1779 consecutive women diagnosed with PCOS between January 2004 and January 2014 were included. In the first year following screening, 659 (37%) women with PCOS attained a pregnancy leading to term birth (≥37 weeks of gestational age). A higher chance of pregnancy was associated with race, smoking, body mass index (BMI), insulin, total testosterone and sex hormone-binding globulin (SHBG) concentrations (c-statisticâ¯=â¯0.59). CONCLUSIONS: Predictors of an increased chance of a live birth include White race, no current smoking, lower BMI, insulin and total testosterone concentrations, and higher SHBG concentrations. This study presents a nomogram to predict the chances of achieving a pregnancy (leading to a term live birth) within 1 year of treatment.
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Anovulação , Infertilidade Feminina , Insulinas , Síndrome do Ovário Policístico , Gravidez , Humanos , Feminino , Masculino , Síndrome do Ovário Policístico/complicações , Síndrome do Ovário Policístico/diagnóstico , Síndrome do Ovário Policístico/terapia , Nascido Vivo , Infertilidade Feminina/terapia , Estudos Prospectivos , Seguimentos , Indução da Ovulação/métodos , TestosteronaRESUMO
Background: Still little is known about the impact of post COVID-19 condition (PC) on health-related quality of life (HRQOL) and mental well-being. We compared participants with PC with three groups: an acute COVID-19 infection (AC) only, at least one chronic condition (CC) but no COVID-19, or no condition at all, healthy (PH). Between these disease groups, we also estimated and compared HRQOL and mental well-being change over time. Methods: Participants from six countries (Greece, Italy, Netherlands, Sweden, United Kingdom and United States) completed two web-based questionnaires (T1 = April-May 2020 and T2 = April-June 2022). Primary outcomes were HRQOL, measured by EQ-5D-5L and EQ VAS, and mental well-being (measured by World Health Organisation-Five (WHO-5) Well-Being Index, Patient Health Questionnaire (PHQ)-9 and General Anxiety Disorder (GAD)-7). All analyses were stratified by the disease groups. Results: In total, 4,999 participants filled out both surveys: 240 were in PC, 107 in AC, 1798 in CC and 2,854 in PH. At T2, the mean EQ-5D-5L index values for the PC, AC, CC and PH groups were 0.70, 0.73, 0.75 and 0.92 (p < .001), respectively. Mean EQ VAS scores were 66, 65, 68 and 81 (p < .001), respectively. Poor mental well-being, depression and anxiety mean values were highest in the PC group (47.7; 9.1; 7.4), followed by the AC group (51.1; 7.7; 5.7), CC group (56.1; 5.2; 4.2) and the PH group (65.6; 2.8; 2.5), respectively (p < .001 between groups). Over time, HRQOL deteriorated in all groups, apart from the PH group. We observed the largest deterioration in the CC (EQ-5D-5L index: Δ0.03, p < .001) and AC group (EQ VAS: Δ6.3, p < .001). For the mental well-being outcomes, deterioration for WHO-5 and PHQ-9 were largest in the AC group (Δ4.8, p = .016; Δ-1.3, p = .012). Rates for GAD-7 improved for the PH and CC groups (PH: Δ1.27, CC: Δ0.56, p < .001). Conclusions: In the cross-sectional analysis, participants with PC had the worst HRQOL and mental well-being compared to the other groups. In terms of change since the start of the COVID-19 pandemic, HRQOL and mental well-being deterioration was highest among AC participants and had a lower impact among PC participants, most likely due to pre-existing chronic disease.
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BACKGROUND: The COVID-19 pandemic affected the mental health of the general population through multiple pathways. The aim of this study was to examine anxiety, depression, self-confidence, and social connectedness among the general population of eight countries during the COVID-19 pandemic, their underlying factors, and vulnerable groups. METHODS: A web-based survey was administered to persons from the general population of China, Greece, Italy, Netherlands, Russia, Sweden, the United Kingdom, and the United States. The survey included the Generalized Anxiety Disorder-7 (GAD-7), Patient Health Questionnaire-9 (PHQ-9) and items on self-confidence, social connectedness, and socio-demographics. Data were analyzed with descriptive statistics, exploratory factor analysis and regression analysis. RESULTS: Twenty-three thousand six hundred twenty-two respondents completed the survey. Overall, 42% of the total sample had mild to severe anxiety symptoms and 43% had mild to severe depression symptoms. 14% to 38% reported suboptimal ratings in self-confidence, social participation, contact with family and friends, and feeling connected to others. In the exploratory factor analyses, in most countries, one dominant factor had a high influence on GAD-7, PHQ-9 sum scores and self-confidence with eigenvalue (% variance) above 3.2 (53.9%). One less dominant factor had a high influence on social connectedness scores with eigenvalue (% variance) ranging above 0.8 (12.8%). Being younger, female, having chronic conditions, perceived as risky to COVID-19 infection, and feeling not very well protected against COVID-19 were significantly associated with the two underlying factors. CONCLUSIONS: Anxiety, depression, and problems with self-confidence and social connectedness were highly prevalent in the general population of eight countries during the early phase of the COVID-19 pandemic. This highlights the importance of the allocation of additional resources to implement policies to mitigate the impact of the pandemic on mental health.
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INTRODUCTION: The variety, time patterns and long-term prognosis of persistent COVID-19 symptoms (long COVID-19) in patients who suffered from mild to severe acute COVID-19 are incompletely understood. Cohort studies will be combined to describe the prevalence of long COVID-19 symptoms, and to explore the pathophysiological mechanisms and impact on health-related quality of life. A prediction model for long COVID-19 will be developed and internally validated to guide care in future patients. METHODS AND ANALYSIS: Data from seven COVID-19 cohorts will be aggregated in the longitudinal multiple cohort CORona Follow Up (CORFU) study. CORFU includes Dutch patients who suffered from COVID-19 at home, were hospitalised without or with intensive care unit treatment, needed inpatient or outpatient rehabilitation and controls who did not suffer from COVID-19. Individual cohort study designs were aligned and follow-up has been synchronised. Cohort participants will be followed up for a maximum of 24 months after acute infection. Next to the clinical characteristics measured in individual cohorts, the CORFU questionnaire on long COVID-19 outcomes and determinants will be administered digitally at 3, 6, 12, 18 and 24 months after the infection. The primary outcome is the prevalence of long COVID-19 symptoms up to 2 years after acute infection. Secondary outcomes are health-related quality of life (eg, EQ-5D), physical functioning, and the prevalence of thromboembolic complications, respiratory complications, cardiovascular diseases and endothelial dysfunction. A prediction model and a patient platform prototype will be developed. ETHICS AND DISSEMINATION: Approval was obtained from the medical research ethics committee of Maastricht University Medical Center+ and Maastricht University (METC 2021-2990) and local committees of the participating cohorts. The project is supported by ZonMW and EuroQol Research Foundation. Results will be published in open access peer-reviewed scientific journals and presented at (inter)national conferences. TRIAL REGISTRATION NUMBER: NCT05240742.
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COVID-19 , Humanos , Estudos de Coortes , COVID-19/epidemiologia , Seguimentos , Prevalência , Qualidade de Vida , Síndrome de COVID-19 Pós-AgudaRESUMO
This study aimed to investigate socioeconomic and health-related determinants and recent life events and their relation to changes in health-related quality of life (HRQoL) and mental well-being during the first year of the COVID-19 pandemic. A web-based survey was administered repeatedly to participants from Greece, Italy, the Netherlands, the United Kingdom, and the United States. Primary outcome measures were HRQoL (measured by EQ-5D-5L) and mental well-being (measured by WHO-5). Linear regression analyses were performed to estimate the impact of determinants on HRQoL and well-being. In total, 6765 respondents completed the questionnaire at T1 (April-May 2020) and T2 (May-June 2021). Regarding results, 33% showed improved HRQoL at T2, whereas 31% deteriorated. In terms of mental well-being, 44% improved and 41% deteriorated. The greatest deterioration in HRQoL and mental well-being from T1 to T2 was observed with an increasing number of chronic conditions. The effect of negative life events on HRQoL and mental well-being was larger than the effect of positive life events. We conclude that slightly more respondents showed improved rather than deteriorated HRQoL and mental well-being, with some variation by outcome measure and country.
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BACKGROUND AND PURPOSE: During the first COVID-19 lockdown elective surgery was greatly reduced. Prioritization of patients with greater need and expected benefit in terms of quality of life was advised. The lockdown also potentially affected follow-up outcomes. Therefore, our study compared patient-reported outcome measures (PROMs) retrieved during the lockdown of Dutch primary total hip and knee arthroplasty (THA, TKA) patients with previous years. PATIENTS AND METHODS: We performed cross-sectional analyses using national data from the Dutch Orthopaedic Registry (LROI). All primary elective THA and TKA patients with preoperative or postoperative PROMs (EQ-5D-3L index, OHS/OKS) during the first COVID-19 lockdown between March and July 15, 2020 were included. Patients with PROMs during the same months in 2018 plus 2019 were used as control. Finally, 33,453 THA and 27,335 TKA patients were included. Patient characteristics were compared during versus before the lockdown. Subsequently, the lockdown effect on PROMs scores was analyzed with multivariable linear regression. RESULTS: During the COVID-19 lockdown, THA and TKA patients had a lower age and BMI preoperatively, and more often had surgery in private clinics. Both preoperative PROMs in THA patients, but not in TKA patients, were worse (EQ-5D: Adjusted mean difference (AMD) -0.021, p < 0.001) during the lockdown compared with prior years. Both postoperative PROMs in THA and TKA patients were better during the lockdown (12-month EQ-5D in THA: AMD 0.010, p = 0.003; and in TKA: AMD 0.013, p < 0.001). INTERPRETATION: During the COVID-19 lockdown, THA patients had slightly worse preoperative PROMs, suggesting selection of patients with greater urgency. Postoperative PROMs in both THA and TKA patients differed minimally. Overall, the observed differences were likely not clinically relevant.
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Artroplastia de Quadril , Artroplastia do Joelho , COVID-19 , COVID-19/epidemiologia , Controle de Doenças Transmissíveis , Estudos Transversais , Humanos , Medidas de Resultados Relatados pelo Paciente , Qualidade de VidaRESUMO
Importance: Some individuals experience persistent symptoms after initial symptomatic SARS-CoV-2 infection (often referred to as Long COVID). Objective: To estimate the proportion of males and females with COVID-19, younger or older than 20 years of age, who had Long COVID symptoms in 2020 and 2021 and their Long COVID symptom duration. Design, Setting, and Participants: Bayesian meta-regression and pooling of 54 studies and 2 medical record databases with data for 1.2 million individuals (from 22 countries) who had symptomatic SARS-CoV-2 infection. Of the 54 studies, 44 were published and 10 were collaborating cohorts (conducted in Austria, the Faroe Islands, Germany, Iran, Italy, the Netherlands, Russia, Sweden, Switzerland, and the US). The participant data were derived from the 44 published studies (10â¯501 hospitalized individuals and 42â¯891 nonhospitalized individuals), the 10 collaborating cohort studies (10â¯526 and 1906), and the 2 US electronic medical record databases (250â¯928 and 846â¯046). Data collection spanned March 2020 to January 2022. Exposures: Symptomatic SARS-CoV-2 infection. Main Outcomes and Measures: Proportion of individuals with at least 1 of the 3 self-reported Long COVID symptom clusters (persistent fatigue with bodily pain or mood swings; cognitive problems; or ongoing respiratory problems) 3 months after SARS-CoV-2 infection in 2020 and 2021, estimated separately for hospitalized and nonhospitalized individuals aged 20 years or older by sex and for both sexes of nonhospitalized individuals younger than 20 years of age. Results: A total of 1.2 million individuals who had symptomatic SARS-CoV-2 infection were included (mean age, 4-66 years; males, 26%-88%). In the modeled estimates, 6.2% (95% uncertainty interval [UI], 2.4%-13.3%) of individuals who had symptomatic SARS-CoV-2 infection experienced at least 1 of the 3 Long COVID symptom clusters in 2020 and 2021, including 3.2% (95% UI, 0.6%-10.0%) for persistent fatigue with bodily pain or mood swings, 3.7% (95% UI, 0.9%-9.6%) for ongoing respiratory problems, and 2.2% (95% UI, 0.3%-7.6%) for cognitive problems after adjusting for health status before COVID-19, comprising an estimated 51.0% (95% UI, 16.9%-92.4%), 60.4% (95% UI, 18.9%-89.1%), and 35.4% (95% UI, 9.4%-75.1%), respectively, of Long COVID cases. The Long COVID symptom clusters were more common in women aged 20 years or older (10.6% [95% UI, 4.3%-22.2%]) 3 months after symptomatic SARS-CoV-2 infection than in men aged 20 years or older (5.4% [95% UI, 2.2%-11.7%]). Both sexes younger than 20 years of age were estimated to be affected in 2.8% (95% UI, 0.9%-7.0%) of symptomatic SARS-CoV-2 infections. The estimated mean Long COVID symptom cluster duration was 9.0 months (95% UI, 7.0-12.0 months) among hospitalized individuals and 4.0 months (95% UI, 3.6-4.6 months) among nonhospitalized individuals. Among individuals with Long COVID symptoms 3 months after symptomatic SARS-CoV-2 infection, an estimated 15.1% (95% UI, 10.3%-21.1%) continued to experience symptoms at 12 months. Conclusions and Relevance: This study presents modeled estimates of the proportion of individuals with at least 1 of 3 self-reported Long COVID symptom clusters (persistent fatigue with bodily pain or mood swings; cognitive problems; or ongoing respiratory problems) 3 months after symptomatic SARS-CoV-2 infection.
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COVID-19 , Transtornos Cognitivos , Fadiga , Insuficiência Respiratória , Adolescente , Adulto , Idoso , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem , Teorema de Bayes , COVID-19/complicações , COVID-19/epidemiologia , Fadiga/epidemiologia , Fadiga/etiologia , Dor/epidemiologia , Dor/etiologia , SARS-CoV-2 , Síndrome , Transtornos Cognitivos/epidemiologia , Transtornos Cognitivos/etiologia , Insuficiência Respiratória/epidemiologia , Insuficiência Respiratória/etiologia , Internacionalidade , Saúde Global/estatística & dados numéricos , Transtornos do Humor/epidemiologia , Transtornos do Humor/etiologia , Síndrome de COVID-19 Pós-AgudaRESUMO
OBJECTIVES: The aim of this study was to compare the responsiveness of EQ-5D-3L (3L) with EQ-5D-5L (5L) descriptive systems and value sets in two independent samples (rehabilitation and stroke patients). METHODS: Descriptive system results were compared cross-sectionally, and descriptive responsiveness was tested by calculating changed level responses ('moves') from baseline to follow-up, proportion of improved patients, Paretian Classification of Health Change (PCHC), and probability of superiority (PS). Responsiveness of values based on nine country-specific value sets was assessed by standardized response mean (SRM) and standardized effect size (SES). Relative efficiency of 5L over 3L was assessed by calculating ratios of the SRM and SES statistics. RESULTS: Descriptive comparisons confirmed earlier evidence and showed a consistent overestimation of health problems in 3L. Descriptive responsiveness improved with 5L in terms of moves per respondent, proportions of improved patients and PS, whereas PCHC showed mixed results. Better value responsiveness statistics were observed for 5L in rehabilitation patients for all value sets. In stroke patients, 3L showed better responsiveness statistics compared with 5L. Relative efficiency results were moderately to strongly better with 5L for rehabilitation, and slightly to moderately better with 3L for stroke. CONCLUSIONS: Descriptive results were the main driver of 3L-5L responsiveness differences. Responsiveness of 3L was influenced by the 'confined to bed' label and the overestimation bias of 3L, which affected all responsiveness results. This may impact quality-adjusted life-year (QALY) estimations, leading to over- or underestimations of QALYs gained, depending on the condition and condition severity. QALY calculations based on 5L data will result in more accurate estimates.
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Nível de Saúde , Acidente Vascular Cerebral , Humanos , Psicometria/métodos , Qualidade de Vida , Anos de Vida Ajustados por Qualidade de Vida , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: This study investigates the relationship of child, caregiver, and caring context measurements with the care-related quality of life (CRQoL) and health-related quality of life (HRQoL) of caregivers of children with juvenile idiopathic arthritis (JIA). METHODS: We performed a cross-sectional analysis of baseline data on caregivers of children with JIA from Canada and the Netherlands collected for the "Canada-Netherlands Personalized Medicine Network in Childhood Arthritis and Rheumatic Diseases" study from June 2019 to September 2021. We used the CRQoL questionnaire (CarerQoL), adult EQ-5D-5L, and proxy-reported Youth 5-Level version of EuroQoL (EQ-5D-5L-Y) to assess caregiver CRQoL, caregiver HRQoL, and child HRQoL, respectively. We used a multivariate analysis to assess the relationship between both caregiver CRQoL and HRQoL and patient, caregiver, and caring context measurements. RESULTS: A total of 250 caregivers were included in this study. Most of the caregivers were from the Netherlands (n = 178, 71%) and 77% were females (n = 193). The mean CarerQoL scores was 82.7 (standard deviation (SD) 11.4) and the mean EQ-5D-5L utility score was 0.87 (SD 0.16). Child HRQoL and employment had a positive relationship with both caregiver CarerQoL and EQ-5D-5L utility scores (p < 0.05), while receiving paid or unpaid help had a negative relationship with both scores (p < 0.05). CONCLUSION: Our findings indicated that to understand the impact of JIA on families, we need to consider socio-economic factors, such as employment and support to carry caregiving tasks, in addition to child HRQoL.
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Artrite Juvenil , Qualidade de Vida , Adolescente , Adulto , Artrite Juvenil/terapia , Cuidadores , Criança , Estudos Transversais , Feminino , Humanos , Masculino , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: The effects of the COVID-19 pandemic caused considerable psychological and physical effects in healthy and diseased New Yorkers aside from the effects in those who were infected. We investigated the relationship between known risk-enhancing and health-promoting factors (social and medical), comorbidity indicators, and, as the primary outcome, health-related quality of life (HRQoL). METHODS: Between April 22 and May 5, 2020, a market research agency (Dynata) administered a digital survey including the EQ-5D-5L and items related to individual characteristics, social position, occupational and insurance status, living situation, exposures (smoking and COVID-19), detailed chronic conditions, and experienced access to care to an existing internet panel representative of New Yorkers. RESULTS: 2684 persons completed the questionnaire. The median age was 48 years old, and most respondents were non-Hispanic white (74%) and reported at least higher vocational training or a university education (83%). During COVID-19, mean HRQoL scores were 0.82 for the EQ-5D-5L index and 79.3 for the EQ VAS. Scores varied for healthy and diseased respondents differently by the above determinants. Lower age, impaired occupational status, loss of health insurance, and limited access to care exerted more influence on EQ-5D-5L scores of diseased persons compared to healthy persons. Among diseased persons, the number of chronic conditions and limited access to health care had the strongest association with EQ-5D-5L scores. While EQ-5D-5L scores improved with increasing age, gender had no noticeable effect. Deprivation factors showed moderate effects, which largely disappeared in (stratified) multivariable analysis, suggesting mediation through excess chronic morbidity and poor healthcare access. Generally, modifying effects were larger in the EQ-5D-5L as compared to the EQ VAS. CONCLUSIONS: Almost all factors relating to a disadvantaged position showed a negative association with HRQoL. In diseased respondents, pre-existing chronic comorbidity and experienced access to health care are key factors.
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COVID-19 , Qualidade de Vida , COVID-19/epidemiologia , Doença Crônica , Desigualdades de Saúde , Nível de Saúde , Humanos , Pessoa de Meia-Idade , New York/epidemiologia , Pandemias , Qualidade de Vida/psicologia , Inquéritos e QuestionáriosRESUMO
AIM: To demonstrate the results of routine screening and treatment for psychiatric problems, psychosocial problems and substance use (PPS) among pregnant women in the Netherlands. This approach is advocated by the national program 'The first 1000 days', which focuses on a healthy start for (unborn) children in vulnerable situations. DESIGN: Secondary data analysis of a routine care dataset obtained from midwifery practices and hospitals throughout the Netherlands. All practices and hospitals applied systematic screening with Mind2Care. METHOD: Each Mind2Care screening results in either a negative result (no risk), an alert and/or a treatment advice based on local care pathways. Anonymous data on detected risk factors and subsequent alerts/advices from 22.141 pregnant women were analyzed. RESULTS: Of all women, 24% had at least one PPS risk factor. Accumulation of risks was present in 10% of women. Thirty-one percent of all pregnant women received at least one specific advice (15% alerts, 24% treatment advices, including overlap). CONCLUSION: One in four pregnant women has psychiatric problems, psychosocial problems and/or substance use for which guideline care is available. Implementation of Mind2Care is demanding to the obstetrical system, and requires multidisciplinary care processes of medical and social caregivers. Despite the lack of a scientific evidence on the added value of systematic detection and treatment of PPS-risks in all pregnancies, this programmatic approach is increasingly acknowledged on the national attention level as the way forward to a healthy start for every child, even if born under vulnerable conditions.
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Tocologia , Complicações na Gravidez , Transtornos Relacionados ao Uso de Substâncias , Criança , Feminino , Humanos , Programas de Rastreamento/métodos , Gravidez , Complicações na Gravidez/diagnóstico , Complicações na Gravidez/prevenção & controle , Gestantes/psicologia , Transtornos Relacionados ao Uso de Substâncias/diagnóstico , Transtornos Relacionados ao Uso de Substâncias/terapiaRESUMO
Importance: While much of the attention on the COVID-19 pandemic was directed at the daily counts of cases and those with serious disease overwhelming health services, increasingly, reports have appeared of people who experience debilitating symptoms after the initial infection. This is popularly known as long COVID. Objective: To estimate by country and territory of the number of patients affected by long COVID in 2020 and 2021, the severity of their symptoms and expected pattern of recovery. Design: We jointly analyzed ten ongoing cohort studies in ten countries for the occurrence of three major symptom clusters of long COVID among representative COVID cases. The defining symptoms of the three clusters (fatigue, cognitive problems, and shortness of breath) are explicitly mentioned in the WHO clinical case definition. For incidence of long COVID, we adopted the minimum duration after infection of three months from the WHO case definition. We pooled data from the contributing studies, two large medical record databases in the United States, and findings from 44 published studies using a Bayesian meta-regression tool. We separately estimated occurrence and pattern of recovery in patients with milder acute infections and those hospitalized. We estimated the incidence and prevalence of long COVID globally and by country in 2020 and 2021 as well as the severity-weighted prevalence using disability weights from the Global Burden of Disease study. Results: Analyses are based on detailed information for 1906 community infections and 10526 hospitalized patients from the ten collaborating cohorts, three of which included children. We added published data on 37262 community infections and 9540 hospitalized patients as well as ICD-coded medical record data concerning 1.3 million infections. Globally, in 2020 and 2021, 144.7 million (95% uncertainty interval [UI] 54.8-312.9) people suffered from any of the three symptom clusters of long COVID. This corresponds to 3.69% (1.38-7.96) of all infections. The fatigue, respiratory, and cognitive clusters occurred in 51.0% (16.9-92.4), 60.4% (18.9-89.1), and 35.4% (9.4-75.1) of long COVID cases, respectively. Those with milder acute COVID-19 cases had a quicker estimated recovery (median duration 3.99 months [IQR 3.84-4.20]) than those admitted for the acute infection (median duration 8.84 months [IQR 8.10-9.78]). At twelve months, 15.1% (10.3-21.1) continued to experience long COVID symptoms. Conclusions and relevance: The occurrence of debilitating ongoing symptoms of COVID-19 is common. Knowing how many people are affected, and for how long, is important to plan for rehabilitative services and support to return to social activities, places of learning, and the workplace when symptoms start to wane. Key Points: Question: What are the extent and nature of the most common long COVID symptoms by country in 2020 and 2021?Findings: Globally, 144.7 million people experienced one or more of three symptom clusters (fatigue; cognitive problems; and ongoing respiratory problems) of long COVID three months after infection, in 2020 and 2021. Most cases arose from milder infections. At 12 months after infection, 15.1% of these cases had not yet recovered.Meaning: The substantial number of people with long COVID are in need of rehabilitative care and support to transition back into the workplace or education when symptoms start to wane.
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BACKGROUND: Fatigue is a common and often disturbing sequela of serious chronic health conditions. In the widely applied HRQL instrument, the EQ-5D, this aspect is not included directly, for its assumed lack of additional information. We investigated the validity of this assumption by determining the gain-if any-of an additional fatigue item to the EQ-5D-5L in a general population sample. METHODS: A Dutch general population sample (including diseased people) completed a web-based survey including the EQ-5D-5L and the Rivermead Post-Concussion Symptoms Questionnaire (RPQ). The RPQ fatigue item was used to create the EQ-5D-5L + Fatigue. We head-to-head compared the psychometric performance contrasting the EQ-5D-5L and EQ-5D-5L + Fatigue: distribution (e.g. ceiling), informativity cf. Shannon's indices, convergent validity, domain dependency, and explanatory power. Results were compared between subgroups with and without ≥ 1 chronic health condition. RESULTS: The study population consisted of 3027 persons of whom 52% had a chronic health condition. The mean EQ-5D-5L utility score was 0.83 and 48% experienced some degree of fatigue. Adding the fatigue item to the EQ-5D-5L decreased the ceiling effect, increased absolute informativity (H' = 6.44 vs. H' = 4.90) and relative informativity (J' = 0.46 vs. J' = 0.42). The extra fatigue item slightly increased convergent validity (Spearman's rank correlation coefficient = - 0.61 vs. - 0.62). Domain dependency analysis showed that all EQ-5D-5L domains are dominant over the fatigue item. Explanatory power of the EQ-5D-5L + Fatigue was higher compared to the EQ-5D-5L (R2 = 0.42 vs. 0.39). The gain is substantially larger in the subgroup with chronic health conditions. CONCLUSIONS: Adding a fatigue item to the EQ-5D-5L improved all psychometric performance criteria of the enriched instrument in the general population. Effects are substantially larger in the subgroup with chronic health conditions, indicating that adding a fatigue item to the EQ-5D-5L is especially relevant in evaluating the HRQL of diseased people.
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PURPOSE: To assess the measurement properties of EQ-5D-3L and EQ-5D-5L in patients with a major lower limb amputation (LLA). METHODS: This was a retrospective register-based study using data from the Swedish Amputation and Prosthetics Registry (SwedeAmp). Patients with a six-months follow-up (including either EQ-5D-3L or EQ-5D-5L) after a major unilateral LLA were included. The measurement properties of EQ-5D-3L and EQ-5D-5L were compared in terms of feasibility, response patterns, informativity, and convergent and known-group validity. RESULTS: The sample included 700 patients with below-knee amputation (76%), above-knee amputation (18%), or knee disarticulation (7%). Responses to EQ-5D-3L and -5L were similar regarding feasibility (98% completion rate) and the proportion reporting no problems (7% and 6%). Compared to EQ-5D-3L, EQ-5D-5L showed higher absolute and relative informativity in all dimensions, with the largest improvement in the mobility dimension. In the analyses of convergent validity, the EQ-5D-5L generally showed stronger correlations with disease-specific measures. Only EQ-5D-5L was able to discriminate between subgroups with different amputation levels. CONCLUSION: The findings support the use of EQ-5D-5L over EQ-5D-3L in patients with an LLA, mainly due to improved informativity and improved convergent and known-group validity.Implications for rehabilitationThe measurement properties of two EQ-5D versions, EQ-5D-3L and EQ-5D-5L, has so far not been evaluated in patients with a lower limb amputation (LLA)The results support the use of EQ-5D-5L over the use of EQ-5D-3L, mainly due to improved informativity and stronger correlations with disease-specific patient-reported outcome measuresThe five-level version of EQ-5D is recommended for future applications of EQ-5D in clinical outcome studies, health economic evaluations, and in the routine follow-up of patients with a major LLAIn the early rehabilitation process six months after an LLA, the majority of patients reported problems with mobility, pain/discomfort, and usual activities.
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Membros Artificiais , Qualidade de Vida , Humanos , Suécia , Estudos Retrospectivos , Inquéritos e Questionários , Psicometria/métodos , Reprodutibilidade dos Testes , Amputação Cirúrgica , Extremidade Inferior/cirurgia , Nível de SaúdeRESUMO
BACKGROUND: The adult versions EQ-5D-3L and EQ-5D-5L have been extensive compared. This is not the case for the EQ-5D youth versions. The study aim was to compare the measurement properties and responsiveness of EQ-5D-Y-3L and EQ-5D-Y-5L in paediatric patients. METHODS: A sample of patients 8-16 years old with different diseases and a wide range of disease severity was asked to complete EQ-5D-Y-3L, EQ-5D-Y-5L, PedsQL Generic Core Scale, and selected, appropriate disease-specific instruments, three times. EQ-5D-Y-3L and EQ-5D-Y-5L were compared in terms of: feasibility, (re-)distribution properties, discriminatory power, convergent validity, test-retest reliability, and responsiveness. RESULTS: 286 participating patients suffered from one of the following diseases: major beta-thalassemia, haemophilia, acute lymphoblastic leukaemia, acute illness. Missing responses were comparable between versions of the EQ-5D-Y, suggesting comparable feasibility. The number of patients in the best health state (level profile 11111) was equal in both EQ-5D-Y versions. The projection of EQ-5D-Y-3L scores onto EQ-5D-Y-5L for all dimensions showed that the two additional levels in EQ-5D-Y-5L slightly improved the accuracy of patients in reporting their problems, especially if severe. Convergent validity with PedsQL and disease-specific measures showed that the two EQ-5D-Y versions performed about equally. Test-retest reliability (EQ-5D-Y-3L 0.78 vs EQ-5D-Y-5L 0.84), and sensitivity for detecting health changes, were both better in EQ-5D-Y-5L. CONCLUSIONS: Extending the number of levels did not give clear superiority to EQ-5D-Y-5L over EQ-5D-Y-3L based on the criteria assessed in this study. However, increasing the number of levels benefitted EQ-5D-Y performance in the measurement of moderate to severe problems and especially in longitudinal study designs.