COCCOS study: Developing a transition program for adolescents with chronic conditions using Experience-Based Co-Design. A study protocol.

BACKGROUND: During adolescence, adolescents and young adults (AYAs) are expected to transfer their care from the pediatric environment towards an adult-focused setting. To prevent an abrupt transfer of care, it is recommended to provide AYAs with chronic conditions an adequate transition program. The aim of this paper is to describe the study protocol for the development of a transition program for AYAs with common chronic conditions (COCCOS study), using the Experience-Based Co-Design (EBCD) methodology. METHODS AND ANALYSIS: A qualitative, participatory study is conducted in Flanders (Belgium). Study participants are AYAs (n≥15, 14-25 years old, diagnosed with type 1 diabetes, asthma, or obesity), their families, and healthcare providers (n≥15). The study is composed of eight EBCD stages: clinical site observations, in-depth interviews, trigger film, healthcare providers' feedback event, AYAs' feedback event, joint event, co-design workshops, and a celebration event. Photovoice will take place as a starting point of EBCD. Data will be analyzed using thematic analysis. RESULTS: Data collection has started in January 2023 and is expected to be completed in May 2024. As of August 2023, over 15 clinical site observations have been conducted. A total of 18 AYAs, two parents, six healthcare providers have been enrolled and a total of 20 interviews have been conducted. CONCLUSION: Advancing transitional care is essential for tackling negative health outcomes. Applying the innovative participatory EBCD methodology will reveal key elements of transitional care for AYAs with common chronic conditions in the development of a person-centered transition program. PRACTICE IMPLICATIONS: Study findings will apply key elements of transitional care of AYAs with chronic conditions in the development of an adequate transition program.

Gender differences in health-related quality of life and psychological distress among coronary patients: Does comorbidity matter? Results from the ESC EORP EUROASPIRE V registry.

AIMS: This study aimed to provide an overview on contemporary gender differences in HRQoL/psychological distress and their relationship with comorbidity burden among European coronary heart disease (CHD) patients. METHODS: Analyses were based on the cross-sectional ESC EORP EUROASPIRE V survey. Consecutive patients (aged 18-80 years), hospitalized for a first or recurrent coronary event were included in this study. Data at hospital discharge and at follow-up (6 to 24 months after hospitalisation) were collected. RESULTS: Data were available for 8261 patients of which 25.8% women. Overall, women reported a worse EQ-5D-5L index score (0.73 vs. 0.81; P < 0.001), EQ-VAS (63.1 vs. 66.0; P = 0.001), global HeartQoL (1.94 vs. 2.26; P < 0.001), physical HeartQoL (1.96 vs. 2.30; P < 0.001), emotional HeartQoL (1.88 vs. 2.18; P < 0.001), HADS-A (6.69 vs. 4.99; P < 0.001), and HADS-D (5.73 vs. 4.62; P < 0.001) compared to men. Also, women were more likely to have comorbidities compared to men (1 comorbidity: 38.7% vs. 35.0%, 2 comorbidities: 9.7% vs. 7.5%; P < 0.001). There is indication that heart failure (EQ-VAS) and diabetes (global HeartQoL, emotional HeartQoL, physical HeartQoL, and HADS-D) interacted with gender and modulate the relationship with HRQoL, in disfavour of women. CONCLUSION: Substantial gender-based health inequalities in terms of HRQoL and psychological distress were found, in disfavour of women. Women had worse HRQoL and psychological distress outcomes when having comorbidities. To a limited extent, comorbidity and women had a negative/synergistic effect on HRQoL. Special attention should be given to this population groups within daily clinical practice.

Psychosocial factors associated with health-related quality of life in patients with chronic disease: Results of a cross-sectional survey.

OBJECTIVE: The impact of various psychosocial factors (sense of coherence, illness perception, patient enablement, self-efficacy, health literacy, personality) is not fully understood across a wide range of chronic diseases, and in particular in patients with multimorbidity. As such, this study assessed the key psychosocial factors associated with impaired health-related quality of life (HRQoL) in patients with one or more chronic diseases based on cross-sectional data collected in Flanders (Belgium). METHODS: Cross-sectional data on 544 chronically ill patients were analysed. Multiple linear regression models were built to analyze the key psychosocial factors associated with HRQoL (EQ-5D-5Lindex as dependent factor). RESULTS: Overall, the strongest independently associated factor with HRQoL was illness perceptions (ß = -0.52, P < 0.001). In addition, sense of coherence (ß = 0.14, P = < 0.05) was independently positively associated with HRQoL. Moreover, after stratification for multimorbidity, the negative association of illness perceptions with HRQoL was stronger when multimorbidity is present compared to when it is absent (ß = -0.62, P < 0.001 vs ß = -0.38, P < 0.001). CONCLUSIONS: This study revealed interesting associations of the modifiable psychosocial factors of illness perceptions and sense of coherence with HRQoL in a population of chronically ill persons. Given that the burden of chronic diseases will rise in the next decades, designing and implementing interventions that enhance these psychosocial abilities of patients, especially illness perceptions in multimorbid patients, is needed in order to reduce the burden of chronic diseases in terms of impaired HRQoL.

Changes in quality-adjusted life expectancy in Belgium, 2013 and 2018.

INTRODUCTION: No information is available in Belgium on life expectancy adjusted for health-related quality of life (HRQoL). Quality-adjusted life expectancy (QALE) captures the multidimensionality of health by accounting for losses in mortality and HRQoL linked to physical, mental, and social impairments. The objective of this study is to estimate for Belgium QALE, the changes in QALE between 2013 and 2018 and the contribution of mortality, HRQoL and its dimensions to this trend. METHODS: The Belgian Health Interview Survey (BHIS), a representative sample of the general population, included the EQ-5D-5L instrument in 2013 and 2018. The tool assesses HRQoL comprising five dimensions (mobility, self-care, usual activities, pain/discomfort, anxiety/depression) using a 5-level severity scoring to define a large variety of health states. The Sullivan method was used to compute at different ages QALE by gender using mortality data from the Belgian statistical office and average EQ-5D scores from the BHIS. QALE was calculated for 2013 and 2018, and changes in QALE over time were decomposed into mortality and ill-health effect. RESULTS: In 2018, QALE at age 15 years (QALE15) was 56.3 years for women and 55.8 years for men, a decrease from 2013 by 0.7 year for women and a stagnation for men. In men, the decrease in mortality counterbalanced the decline in HRQoL. The decline in QALE in women is driven by a decrease in mortality rates that is too small to compensate for the substantial decline in HRQoL before the age of 50 years. In women at older ages, improvements in HRQoL are observed. In women, QALE15 is decreasing due to an increase in pain/discomfort, anxiety/depression and problems in usual activities. In men at age 15, the pain/discomfort and anxiety/depression domains contributed to the stagnation. QALE65 increased somewhat, due to an improvement in self-care and mobility for both genders, and usual activities and anxiety/depression in men only. CONCLUSION: The strength of QALE as member of the family of composite indicators, the health expectancies, is the multidimensional structure of the underlying health component, including both ill-health with different health domains as levels of severity. The ability to decompose differences in the health expectancy not only into a mortality and health component but also into the different health dimensions allows to better inform on general population health trends. Next, compared to other health expectancy indicators, QALE is more sensitive to changes at younger ages.

Polypharmacy and Health-Related Quality of Life/Psychological Distress Among Patients With Chronic Disease.

INTRODUCTION: To date, no study has investigated the impact of polypharmacy (use of ≥5 medications concurrently) on health-related quality of life (HRQOL) and psychological distress in a combined sample of chronic disease patients and patients with multimorbidity, using diverse HRQOL measures. This study aimed to explore the association between polypharmacy and HRQOL/psychological distress by using data from a cross-sectional study in Flanders (Belgium). METHODS: We analyzed cross-sectional survey data on 544 chronically ill patients recruited from June 2019 through June 2021. HRQOL was measured with the EuroQol-5 Dimension-5 Level questionnaire (EQ-5D-5L) and the 12-Item Short Form Health Survey (SF-12); psychological distress was measured with the Hospital Anxiety and Depression Scale (HADS). Multiple linear regression models were built to assess the association between polypharmacy and HRQOL/psychological distress. RESULTS: Overall, compared with patients without polypharmacy, patients with polypharmacy reported worse EQ-5D-5L index values, EuroQol visual analogue scale (EQ-VAS) scores, SF-12 physical component scores (PCS), SF-12 mental component scores (MCS), and HADS anxiety and depression subscales. In the final regression model adjusting for age, sex, educational attainment, and multimorbidity, polypharmacy remained significantly associated with lower HRQOL in terms of the EQ-5D-5L index (ß = -0.12; P = .008), EQ-VAS (ß = -0.11; P = .01), and SF-12 PCS (ß = -0.15; P = .002) but not with psychological distress (HADS) and SF-12 MCS. CONCLUSION: This study found that polypharmacy was negatively associated with the physical domain of HRQOL, but not with the mental domain, among patients with chronic diseases. These results may be especially important for patients with multimorbidity, given their greater risk of polypharmacy.

QALY losses for chronic diseases and its social distribution in the general population: results from the Belgian Health Interview Survey.

BACKGROUND: The burden of chronic diseases is rapidly rising, both in terms of morbidity and mortality. This burden is disproportionally carried by socially disadvantaged population subgroups. Quality-adjusted life years (QALYs) measure the impact of disease on mortality and morbidity into a single index. This study aims to estimate the burden of chronic diseases in terms of QALY losses and to model its social distribution for the general population. METHODS: The Belgian Health Interview Survey 2013 and 2018 provided data on self-reported chronic conditions for a nationally representative sample. The annual QALY loss per 100,000 individuals was calculated for each condition, incorporating disease prevalence and health-related quality of life (HRQoL) data (EQ-5D-5L). Socioeconomic inequalities, based on respondents' socioeconomic status (SES), were assessed by estimating population attributable fractions (PAF). RESULTS: For both years, the largest QALY losses were observed in dorsopathies, arthropathies, hypertension/high cholesterol, and genitourinary problems. QALY losses were larger in women and in older individuals. Individuals with high SES had consistently lower QALY loss when facing a chronic disease compared to those with low SES. In both years, a higher PAF was found in individuals with hip fracture and stroke. In 2013, the health inequality gap amounts to 33,731 QALYs and further expanded to 42,273 QALYs in 2018. CONCLUSION: Given that chronic diseases will rise in the next decades, addressing its burden is necessary, particularly among the most vulnerable (i.e. older persons, women, low SES). Interventions in these target groups should get priority in order to reduce the burden of chronic diseases.

Belgian population norms for the EQ-5D-5L, 2018.

PURPOSE: Health-related quality of life outcomes are increasingly used to monitor population health and health inequalities and to assess the (cost-) effectiveness of health interventions. The EQ-5D-5L has been included in the Belgian Health Interview Survey, providing a new source of population-based self-perceived health status information. This study aims to estimate Belgian population norms for the EQ-5D-5L by sex, age, and region and to analyze its association with educational attainment. METHODS: The BHIS 2018 provided EQ-5D-5L data for a nationally representative sample of the Belgian population. The dimension scores and index values were analyzed using logistic and linear regressions, respectively, accounting for the survey design. RESULTS: More than half of respondents reported problems of pain/discomfort, while over a quarter reported problems of anxiety/depression. The average index value was 0.84. Women reported more problems on all dimensions, but particularly on anxiety/depression and pain/discomfort, resulting in significantly lower index values. Problems with mobility, self-care, and usual activities showed a sharp increase after the age of 80 years. Consequently, index values decreased significantly by age. Lower education was associated with a higher prevalence of problems for all dimensions except anxiety/depression and with a significantly lower index value. CONCLUSION: This paper presents the first nationally representative Belgian population norms using the EQ-5D-5L. Inclusion of the EQ-5D in future surveys will allow monitoring over time of self-reported health, disease burden, and health inequalities.

The impact of multimorbidity patterns on health-related quality of life in the general population: results of the Belgian Health Interview Survey.

BACKGROUND: Chronic diseases and multimorbidity are a major cause of disease burden-for patients, caregivers, and society. Little is known however about potential interaction effects between specific disease combinations. Besides an additive effect, the presence of multiple conditions could also act synergistically or antagonistically regarding the impact on patients' health-related quality of life (HRQoL). The aim was to estimate the impact of coexisting chronic diseases on HRQoL of the adult general Belgian population. METHODS: The Belgian Health Interview Survey 2018 provided data on self-reported chronic conditions and HRQoL (EQ-5D-5L) for a nationally representative sample. Linear mixed models were used to analyze two-way and three-way interactions of disease combinations on HRQoL. RESULTS: Multimorbidity had a prevalence of 46.7% (≥ 2 conditions) and 29.7% (≥ 3 conditions). HRQoL decreased considerably with the presence of multiple chronic diseases. 14 out of 41 dyad combinations and 5 out of 13 triad combinations showed significant interactions, with a dominant presence of negative/synergistic effects. Positive/antagonistic effects were found in more subjective chronic diseases such as depression and chronic fatigue. Conditions appearing the most frequently in significant disease pair interactions were dorsopathies, respiratory diseases, and arthropathies. CONCLUSIONS: Diverse multimorbidity patterns, both dyads and triads, were synergistically or antagonistically associated with lower HRQoL. Tackling the burden of multimorbidity is needed, especially because most disease combinations affect each other synergistically, resulting in a greater reduction in HRQoL. Further knowledge about those multimorbidity patterns with a greater impact on HRQoL is needed to better understand disease burden beyond mortality and morbidity data.

Living with a chronic disease: insights from patients with a low socioeconomic status.

BACKGROUND: Little is known about how patients with low socioeconomic status (SES) experience their chronic disease, and how it impacts health-related quality of life (HRQoL). Compared to their more affluent counterparts, worse outcomes have been reported. A better understanding of the domains of HRQoL that are relevant to these specific populations is therefore needed. We explored the experiences of living with a chronic disease in low SES persons. METHODS: A qualitative interview study was performed in Flanders, Belgium. Semi-structured interviews were conducted in chronically ill patients, selected through purposive sampling. Interviews were audio-recorded and transcribed verbatim. Analysis followed an inductive and iterative approach. RESULTS: Fifteen patients were interviewed. Six major themes were identified: a heavy bag to carry, loss of autonomous life, inner and outer loneliness, emotional imbalance, unmet need for support, and coping strategies. Patients experienced their illness as an additional problem on top of all other problems (i.e. financial/social problems, traumatic life events). In general, the disease burden and non-disease burden were mutually reinforcing, resulting in greater dependency, greater risk of social isolation, greater psychological distress, and greater risk of impaired HRQoL. CONCLUSIONS: This study is the first to provide detailed insight into the experiences of living with a chronic disease in low SES persons. A conceptual model is proposed that can be used in daily clinical practice to raise awareness among clinicians and health care providers that the patient's needs go beyond the disease itself. Future research is needed to validate and test the model.

Health-related quality of life in patients with non-communicable disease: study protocol of a cross-sectional survey.

INTRODUCTION: Non-communicable diseases (NCDs) are associated with lower health-related quality of life (HRQoL). However, knowledge about those diseases and predictors with a greater impact on patients' HRQoL as well as knowledge on the complex relationship between HRQoL and comorbidities is lacking. The aim of this study is to assess the impact of NCDs on patients' HRQoL, with a focus on multimorbidity and socioeconomic status. METHODS AND ANALYSIS: A primary care-based cross-sectional study is conducted in Flanders (Belgium). Study participants (≥18 years) are medically diagnosed with at least one of the following diseases: cardiometabolic disorders, mental disorders and musculoskeletal disorders. A minimum of 50 general practitioners will participate to recruit participants (convenient sample) and a total of 531 patients will be enrolled (voluntary response sample). Each participant will complete a paper-based questionnaire to gather research outcomes. Statistical analyses will be performed using multiple linear regression models with HRQoL as main outcome parameter, adjusted for possible confounders. This study will generate new evidence on the key predictors of HRQoL in patients with NCDs, and particularly provide new insights in multimorbidity to improve the quality of care in primary care, to support patients' self-management and to allocate resources more effectively. ETHICS AND DISSEMINATION: The study has been approved by the Ethical Committee of Ghent University Hospital, Ghent, Belgium (reference number: B670201939629) prior to the beginning of the recruitment. Study results will be disseminated through peer-reviewed publications and conference presentations.

Health-related quality of life overview after different curative treatment options in muscle-invasive bladder cancer: an umbrella review.

PURPOSE: This umbrella review aims to evaluate the quality, summarize and compare the conclusions of systematic reviews investigating the impact of curative treatment options on health-related quality of life (HRQoL) in muscle-invasive bladder cancer (MIBC). METHODS: The Cochrane Library, MEDLINE, Embase and Web of Science were searched independently by two authors from inception until 06 January 2020. Systematic reviews and meta-analyses assessing the impact of any curative treatment option on HRQol in MIBC patients were eligible. Risk of bias was assessed using the AMSTAR 2 tool. RESULTS: Thirty-two reviews were included. Robot-assisted RC with extracorporeal urinary diversion and open RC have similar HRQoL (n = 10). Evidence for pelvic organ-sparing RC was too limited (n = 2). Patients with a neobladder showed better overall and physical HRQoL outcomes, but worse urinary function in comparison with ileal conduit (n = 17). Bladder-preserving radiochemotherapy showed slightly better urinary and sexual but worse gastro-intestinal HRQoL outcomes in comparison with RC patients (n = 6). Quality of the reviews was low in more than 50% of the available reviews and most of the studies included in the reviews were nonrandomized studies. CONCLUSION: This umbrella review gives a comprehensive overview of the available evidence to date.

EQ-5D in coronary patients: what are they suffering from? Results from the ESC EORP European Survey of Cardiovascular Disease Prevention and Diabetes (EUROASPIRE IV) Registry.

OBJECTIVE: Coronary patients often suffer from an impaired health, hence the aim of this study is to assess how coronary patients score on the different EQ-5D dimensions. METHODS: Analyses are based on the EUROASPIRE IV survey, conducted across 24 European countries. 7567 patients with stable coronary heart disease (mean age = 64.1 (SD = 9.6); males = 75.8%) completed the EQ-5D-5L instrument, 6 months to 3 years after their index hospitalization. Descriptive statistics and multilevel logistic regression was used to assess the differences between patient groups in reported problems on the EQ-5D dimensions. Furthermore, age-standardized country-specific outcomes were reported. RESULTS: About one out of four patients reported to have no problems on all five dimensions (57.9% reported no problems on mobility, 88.4% reported no problems on self-care, 67.1% reported no problems on usual activities, 41.1% reported no problems on pain/discomfort, and 56.2% reported no problems on anxiety/depression). Elderly patients and females reported more problems. Patients with behavioral risk factors and patients with comorbidities were more likely to have severe or extreme problems. Comparison across countries showed major differences in reported problems. CONCLUSIONS: Whether or not coronary patients have problems on one or more EQ-5D dimension, as well as the severity of the problems reported is largely associated with the patient profile. The least problems are seen on the self-care dimension and most problems are reported on the pain/discomfort dimension.

A comprehensive catalogue of EQ-5D scores in chronic disease: results of a systematic review.

PURPOSE: Chronic diseases are associated with impaired health-related quality of life (HRQoL) outcomes. Comparison of HRQoL outcomes between different diseases and with the general population is of major importance to health economists, epidemiologists, clinicians, and policy makers. The aim of this systematic literature review was to develop a catalogue with EQ-5D scores in chronic non-communicable diseases, and to compare these scores with reference values from the general population. METHODS: MEDLINE, Embase, and Web of Science were systematically searched independently by two reviewers. Studies were included if they reported mean EQ-5D index values for the adult population and if these scores were compared with the general population. The QualSyst tool for quantitative research was used for quality appraisal. RESULTS: Two hundred and seven articles met the inclusion criteria. An extensive catalogue summarizes the EQ-5D scores in a wide variety of chronic diseases. Mean EQ-5D index values ranged between - 0.20 and 1. Lower EQ-5D scores are reported in chronic diseases compared to the general population, specifically in neurological disorders. Most of the diseases demonstrate a substantial disutility, although a minority of diseases have equal or even higher index scores than the general population. CONCLUSION: A comprehensive, international catalogue has been developed to provide EQ-5D index scores for diverse chronic diseases compared with reference values based on the available literature. The catalogue gives a clear overview of the existing EQ-5D scores and can be rapidly accessed by researchers worldwide for different applications such as health economic evaluations, decision making, resource allocation, and other policy objectives. Future studies should focus on unexamined diseases and specific patient groups to expand the evidence base on HRQoL in chronic diseases.

Factors Associated with the Caregivers' Desire to Institutionalize Persons with Dementia: A Cross-Sectional Study.

BACKGROUND/AIMS: Dementia is one of the main reasons for institutionalization among the elderly. Few studies have explored factors associated with the caregivers' (CG) desire to institutionalize (DTI) a person with dementia (PWD). The objective of this study is to identify modifiable and non-modifiable psychosocial and sociodemographic factors associated with a caregiver's DTI. METHODS: Cross-sectional data of 355 informal CG of community-dwelling PWD were analyzed. Several characteristics were identified in CG and PWD to be included in a multivariable regression model based on the purposeful selection method. RESULTS: Positively modifiable associated factors were: higher CG burden, being affected by behavioral problems, and respite care use. Positively associated non-modifiable factors were: CG older age, being professionally active, and CG higher educational level. Cohabitation and change of professional situation were negatively associated. CONCLUSION: Although no causality can be assumed, several practical recommendations can be suggested. First of all, these results reconfirm the importance of multicomponent strategies, especially support aimed at decreasing burden and in learning coping strategies. Also, CG might benefit from information about support options, such as respite care services. Finally, special attention should be given to older and working CG. In the latter, flexible and adaptive working conditions might alleviate burden and therefore reduce the DTI of the PWD.