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International Journal of Environmental... Aug 2023Informal caregivers (ICs) of cancer patients play a crucial role in health care. Several of the challenges they face can affect their quality of life (QoL). This...
Informal caregivers (ICs) of cancer patients play a crucial role in health care. Several of the challenges they face can affect their quality of life (QoL). This cross-sectional study explored role of burnout and caregiving satisfaction in their relationship to QoL. Portuguese ICs of adult cancer patients ( = 92) answered a sociodemographic and caregiving questionnaire, the WHOQOL-SRPB BREF, assessing physical, psychological, social, environmental, and spiritual QoL domains; the Maslach Burnout Interview, assessing the dimensions of depersonalization, emotional exhaustion, and personal accomplishment; and a Visual Analogic Scale on caregiving satisfaction. We tested correlations and a parallel mediation model for each domain of QoL, considering burnout dimensions as possible mediators between satisfaction and QoL domains. Our results show that satisfaction, burnout dimensions, and almost all QoL domains are correlated. Together, burnout dimensions seem to mediate the relationship between caregiving satisfaction and psychological, environmental, and spiritual QoL. Satisfaction had a significant indirect effect solely through emotional exhaustion on psychological QoL (β = 1.615, 95% BCI [0.590; 2.849]), environmental QoL (β = 0.904, 95% BCI [0.164; 1.876]), and spiritual QoL (β = 0.816, 95% BCI [0.019; 1.792]). It seems essential for mental health professionals to address these dimensions when providing support to an IC.
Topics: Adult; Humans; Caregivers; Quality of Life; Cross-Sectional Studies; Burnout, Psychological; Health Personnel
PubMed: 37623163
DOI: 10.3390/ijerph20166577 -
Advances in Therapy Nov 2023There is limited information regarding multidimensional relationships between asthma control and health-related quality of life (HRQoL), work productivity, and asthma...
INTRODUCTION
There is limited information regarding multidimensional relationships between asthma control and health-related quality of life (HRQoL), work productivity, and asthma symptom burden in Japan. Furthermore, systematic qualitative investigations about asthma burden have not been performed.
METHODS
This cross-sectional, mixed-methods study included Japanese patients (≥ 20 years) with asthma adherent to inhaled corticosteroids/long-acting β-agonists (ICS/LABA). The primary endpoint was impact of asthma on HRQoL, measured using the Asthma Health Questionnaire-33 (AHQ-33). Secondary endpoints were cough burden (Japanese-adapted Leicester Cough Questionnaire [J-LCQ]) and impact of asthma on work/activities (asthma-specific Work Productivity and Activity Impairment Questionnaire [WPAI:Asthma]). Quantitative data were assessed for the overall population and for well-controlled (WC) and not well-controlled (NWC) asthma subgroups. Qualitative verbal interviews further assessed the impact of NWC asthma on patients' HRQoL; emergent themes were extracted using thematic analyses.
RESULTS
Of 454 patients, 45.2% (n = 205) had NWC asthma. Patients with NWC asthma had significantly worse asthma- and cough-related HRQoL across all AHQ-33 and J-LCQ domains and significantly greater work and activity impairment versus patients with WC asthma, across all assessed WPAI:Asthma domains. AHQ-33 total score was highly correlated with J-LCQ total and domain scores (r = - 0.8132 to r = - 0.7407). Nine themes emerged from qualitative interviews and confirmed that patients with NWC asthma had considerable HRQoL impairment due to asthma symptoms.
CONCLUSIONS
Patients with NWC asthma had higher symptom burden and worse HRQoL than patients with WC asthma, despite ICS/LABA adherence. Cough burden correlated with HRQoL, suggesting cough may be one of the key markers to inform treatment strategy for patients with asthma.
Topics: Humans; Quality of Life; Cough; Japan; Cross-Sectional Studies; Drug Therapy, Combination; Administration, Inhalation; Asthma; Adrenal Cortex Hormones
PubMed: 37698717
DOI: 10.1007/s12325-023-02660-5 -
BMC Urology Nov 2023Similar Patient-Reported Outcomes (PROs) at diagnosis for localized prostate cancer among countries may indicate that different treatments are recommended to the same...
INTRODUCTION
Similar Patient-Reported Outcomes (PROs) at diagnosis for localized prostate cancer among countries may indicate that different treatments are recommended to the same profile of patients, regardless the context characteristics (health systems, medical schools, culture, preferences…). The aim of this study was to assess such comparison.
METHODS
We analyzed the EPIC-26 results before the primary treatment of men diagnosed of localized prostate cancer from January 2017 onwards (revised data available up to September 2019), from a multicenter prospective international cohort including seven regions: Australia/New Zealand, Canada, Central Europe (Austria / Czech Republic / Germany), United Kingdom, Italy, Spain, and the United States. The EPIC-26 domain scores and pattern of three selected items were compared across regions (with Central Europe as reference). All comparisons were made stratifying by treatment: radical prostatectomy, external radiotherapy, brachytherapy, and active surveillance.
RESULTS
The sample included a total of 13,483 men with clinically localized or locally advanced prostate cancer. PROs showed different domain patterns before treatment across countries. The sexual domain was the most impaired, and the one with the highest dispersion within countries and with the greatest medians' differences across countries. The urinary incontinence domain, together with the bowel and hormonal domains, presented the highest scores (better outcomes) for all treatment groups, and homogeneity across regions.
CONCLUSIONS
Patients with localized or locally advanced prostate cancer undergoing radical prostatectomy, EBRT, brachytherapy, or active surveillance presented mainly negligible or small differences in the EPIC-26 domains before treatment across countries. The results on urinary incontinence or bowel domains, in which almost all patients presented the best possible score, may downplay the baseline data role for evaluating treatments' effects. However, the heterogeneity within countries and the magnitude of the differences found across countries in other domains, especially sexual, support the need of implementing the PRO measurement from diagnosis.
Topics: Humans; Male; Brachytherapy; Patient Reported Outcome Measures; Prospective Studies; Prostatectomy; Prostatic Neoplasms; Quality of Life; Registries; Urinary Incontinence; Multicenter Studies as Topic
PubMed: 37919726
DOI: 10.1186/s12894-023-01344-0 -
Acta Orthopaedica Sep 2023The Brace Questionnaire (BrQ) is a disease-specific health-related quality of life (HRQOL) instrument for measuring perceived health status of scoliosis patients...
BACKGROUND AND PURPOSE
The Brace Questionnaire (BrQ) is a disease-specific health-related quality of life (HRQOL) instrument for measuring perceived health status of scoliosis patients undergoing brace treatment. The purpose of this study is to evaluate the validity and reliability of a translated and culturally adapted Dutch version of the BrQ.
PATIENTS AND METHODS
The original Greek BrQ was translated into Dutch and a cross-cultural adaptation and validation processes were conducted. Subsequently, 80 adolescent idiopathic scoliosis (AIS) patients undergoing active brace treatment were included from 4 scoliosis centers to evaluate the validity and reliability of the Dutch version of the BrQ. The questionnaire's floor and ceiling effects, internal consistency, and test-retest reliability were assessed. Concurrent validity was evaluated by comparing the BrQ with the revised Scoliosis Research Society 22-item questionnaire (SRS-22r) scores.
RESULTS
The mean total BrQ score was 75.9 (standard deviation [SD] 11.3) and the mean domain scores varied between 3.4 (SD 0.9) and 4.2 (SD 0.7) for the domains "vitality" and "bodily pain," respectively. There were no floor and ceiling effects for the total BrQ score. The BrQ showed satisfactory internal consistency in most subdomains with a Cronbach's α ranging between 0.35 for the domain "general health perception" and 0.89 for the domain "self-esteem and aesthetics." Excellent test-retest reproducibility was observed for the total BrQ score (ICC 0.91), and the BrQ was successfully validated against the SRS-22r.
CONCLUSION
The translated and culturally adapted Dutch version of the BrQ is a valid and reliable HRQOL instrument for AIS patients undergoing brace treatment.
Topics: Adolescent; Humans; Quality of Life; Reproducibility of Results; Scoliosis; Braces; Kyphosis; Surveys and Questionnaires
PubMed: 37670558
DOI: 10.2340/17453674.2023.18492 -
Journal of Global Health Nov 2023The explosion of information, misinformation and disinformation (the "infodemic") related to the coronavirus disease 2019 (COVID-19) pandemic on digital and social media... (Observational Study)
Observational Study
BACKGROUND
The explosion of information, misinformation and disinformation (the "infodemic") related to the coronavirus disease 2019 (COVID-19) pandemic on digital and social media is reported to affect mental health and quality of life. However, reports assessing the COVID-19 infodemic on health-related quality of life (HRQL) in patients with chronic diseases are scarce. In this study, we investigated the associations between the infodemic and HRQL in uninfected individuals with pre-existing chronic respiratory diseases (CRDs) such as asthma, chronic obstructive pulmonary disease (COPD) and other CRDs.
METHODS
We conducted a multi-national, cross-sectional, observational study in Canada, India, New Zealand and the United Kingdom where we distributed a set of digitised questionnaires among 1018 participants with chronic respiratory diseases who were not infected with the SARS-CoV-2 virus at least three months prior to the study. We collected information about the infodemic such as news watching or social media use more than usual during the pandemic. HRQL was assessed using the short form of the chronic respiratory questionnaire (SF-CRQ). Demographic information, comorbidities, compliance, mental health, behavioural function, and social support were also recorded. We analysed the direct and indirect relationships between infodemic and HRQL using structural equation models (SEM).
RESULTS
Of all participants, 54% were females and had a mean (standard deviation (SD)) age of 53 (17) years. We found that higher infodemic was associated with worse emotional function (regression coefficient β = -0.08; 95% confidence interval (CI) = -0.14 to -0.01), which means a one SD change of the higher infodemic latent variable was associated with a 0.08 SD change of emotional function level. The association between higher infodemic and worse emotional function was mediated by worse mental health and behavioural functions but is marginally ameliorated by improved social support. In stratification analysis, we found significant disease and country-wise variations in the associations between infodemic and SF-CRQ domain scores.
CONCLUSIONS
These results provide new evidence that the COVID-19 infodemic significantly influences the HRQL in patients with CRDs through a complex interplay between mental health, behavioural function, and social support. This new dimension of research also opens avenues for further research on infodemic-related health effects in other chronic diseases.
Topics: Female; Humans; Middle Aged; Male; COVID-19; Quality of Life; SARS-CoV-2; Cross-Sectional Studies; Infodemic; Respiration Disorders; Chronic Disease
PubMed: 37947025
DOI: 10.7189/jogh.13.06045 -
Cancer Medicine Aug 2023Fear of cancer recurrence (FCR) and psychological distress are common psychological problems in breast cancer (BC) patients and ultimately affecting their health-related...
BACKGROUND
Fear of cancer recurrence (FCR) and psychological distress are common psychological problems in breast cancer (BC) patients and ultimately affecting their health-related quality of life (HRQoL). Heart rate variability (HRV) can reflect the activity of the parasympathetic nervous system. However, the pathways through which HRV influences between FCR and HRQoL are unclear. This study preliminarily explored the intermediary role of HRV in FCR and HRQoL in BC patients.
METHODS
A total of 101 BC patients participated in this study. HRV parameters were measured by a 5-min dynamic electrocardiogram. FCR, psychological distress and HRQoL were evaluated by the Fear of disease progression simplified scale (FOP-Q-SF), Distress thermometer and SF-36 concise health survey. The intermediary effect model was established to test the intermediary effect of high frequency-HRV (HF-HRV) on FCR and HRQoL.
RESULTS
FCR and psychological distress were negatively correlated with HRV in the time domain, negatively correlated with HF-HRV in the frequency domain, and positively correlated with low frequency/high frequency (LF/HF). HF-HRV had a partial mediating effect on the FCR and physical health and mental health, with effects of 30.23% and 9.53%, respectively.
CONCLUSION
FCR and psychological distress are correlated with HRV parameters in the time domain and the frequency domain, and we preliminarily believe that parasympathetic nerves play an important intermediary role between FCR and subjective physical and mental health. This may provide intervention information for improving the HRQoL of BC patients.
Topics: Humans; Female; Heart Rate; Quality of Life; Mental Health; Breast Neoplasms; Fear
PubMed: 37325894
DOI: 10.1002/cam4.6250 -
Orphanet Journal of Rare Diseases Jul 2023Gaucher disease (GD) is a rare autosomal recessive lysosomal storage disorder. GD types 2 and 3 are known as neuronopathic Gaucher disease (nGD) because they have brain...
BACKGROUND
Gaucher disease (GD) is a rare autosomal recessive lysosomal storage disorder. GD types 2 and 3 are known as neuronopathic Gaucher disease (nGD) because they have brain involvement that progresses over time. Implementing a systematic approach to the collection of real-world clinical and patient-relevant outcomes data in nGD presents an opportunity to fill critical knowledge gaps and ultimately help healthcare providers in the management of this patient population. This paper summarizes the development of a patient-initiated Gaucher Registry for Development Innovation and Analysis of Neuronopathic Disease (GARDIAN).
METHODS
The International Gaucher Alliance led the GARDIAN planning, including governance, scope, stakeholder involvement, platform, and reporting. Registry element input was determined in a series of meetings with clinical experts, patients, and caregivers, who identified key clinical variables and the draft content of nGD patient-reported outcomes (PRO) and observer-reported outcomes (ObsRO) focusing on symptoms, patient physical and emotional functioning. These were then tested in cognitive interviews with patients with nGD (> 12 years of age) and caregivers.
RESULTS
Core registry data elements (n = 138) were identified by seven global clinical experts from Egypt, Germany, Israel, Japan, United Kingdom (UK), and United State (US) and reviewed via online Delphi method by 14 additional clinicians with experience of nGD from six countries and three pharmaceutical representatives. The elements were consistent with those identified via interviews with 10 patients/caregivers with nGD from Japan, Sweden, UK, and US. Key domains identified were demographics, diagnostic information, health status, clinical symptomatology, laboratory testing, treatment, healthcare resource utilization, aids/home improvements, and patient/caregiver burden and quality of life, specifically physical functioning, self-care, daily and social activities, emotional impacts, support services, and caregiver-specific impacts. Nine caregivers and six patients from the US, UK, China, Mexico, Egypt, and Japan participated in the cognitive interviews that informed revisions to ensure that all items are understandable and interpreted as intended.
CONCLUSIONS
The comprehensive set of clinical and patient relevant outcomes data, developed collaboratively among all stakeholders, to be reported using GARDIAN will bridge the many gaps in the understanding of nGD and align with regulatory frameworks on real-world data needs.
Topics: Humans; Gaucher Disease; Quality of Life; Lysosomal Storage Diseases; Brain; China
PubMed: 37480076
DOI: 10.1186/s13023-023-02828-w -
Value in Health : the Journal of the... Jul 2023We aimed to compare measurement properties of the 5-level version of EQ-5D (EQ-5D-5L) and 2 Patient-Reported Outcomes Measurement Information System (PROMIS) short...
A Direct Comparison of the Measurement Properties of EQ-5D-5L, PROMIS-29+2 and PROMIS Global Health Instruments and EQ-5D-5L and PROPr Utilities in a General Population Sample.
OBJECTIVES
We aimed to compare measurement properties of the 5-level version of EQ-5D (EQ-5D-5L) and 2 Patient-Reported Outcomes Measurement Information System (PROMIS) short forms, PROMIS-29+2 and PROMIS Global Health (PROMIS-GH-10), and of EQ-5D-5L and PROMIS-preference scoring system (PROPr) utilities.
METHODS
A cross-sectional survey was conducted in a general population sample in Hungary (N = 1631). We compared the following measurement properties at the level of items, domains, and utilities, the latter using corresponding US value sets: ceiling and floor, informativity (Shannon's indices), agreement, convergent, and known-group validity. For the analyses, PROMIS items/domains were matched to EQ-5D-5L domains that cover similar concepts of health.
RESULTS
The majority of PROMIS items showed enhanced distributional characteristics, including lower ceilings and higher informativity than the EQ-5D-5L. Good convergent validity was established between EQ-5D-5L and PROMIS domains capturing similar aspects of health. Mean EQ-5D-5L utilities were substantially higher than those of PROPr (0.864 vs 0.535). EQ-5D-5L utilities correlated moderately or strongly with PROPr (r = 0.61), PROMIS-GH-10 physical (r = 0.68), and mental health summary scores (r = 0.53). EQ-5D-5L utilities decreased with age, whereas PROPr utilities slightly increased with age. EQ-5D-5L utilities discriminated significantly better in 12/28 (ratio of F-statistics) and 18/26 (area under the receiver-operating characteristics curve ratio) known groups defined by age, self-perceived health status, and self-reported physician-diagnosed health conditions, including hypertension, diabetes, coronary heart disease, chronic kidney disease, and stroke.
CONCLUSIONS
This study provides comparative evidence on the measurement properties of EQ-5D-5L, PROMIS-29+2, and PROMIS-GH-10 and informs decisions about the choice of instruments in population health surveys for assessment of patients' health and for cost-utility analyses.
Topics: Humans; Quality of Life; Cross-Sectional Studies; Global Health; Psychometrics; Health Status; Surveys and Questionnaires; Reproducibility of Results
PubMed: 36804583
DOI: 10.1016/j.jval.2023.02.002 -
JAMA Network Open May 2024Associations of domain-specific physical activity with stroke incidence and poststroke outcomes have not been extensively studied using long-term, population-based data.
IMPORTANCE
Associations of domain-specific physical activity with stroke incidence and poststroke outcomes have not been extensively studied using long-term, population-based data.
OBJECTIVE
To investigate associations of leisure time, work time, transport, and household physical activity with stroke incidence and death or dependency in activities of daily living (ADL) 3 months after stroke.
DESIGN, SETTING, AND PARTICIPANTS
The prospective, population-based Interplay Between Genetic Susceptibility and External Factors (INTERGENE) cohort study was conducted among a random sample of individuals from an urban-rural area covering western Sweden; 3614 individuals aged 24 to 77 years were examined in 2001 to 2004, and 1394 individuals were reexamined in 2014 to 2016. The median (range) follow-up was 20.0 years (56 days to 21.9 years). Data were analyzed from September through October 2023.
EXPOSURE
Physical activity levels were self-reported for leisure time, work time, transportation, and household domains. The mean number of steps taken over a 6-day period was collected in a subgroup of participants using a sealed pedometer.
MAIN OUTCOMES AND MEASURES
Follow-up for stroke incidence and mortality rates continued until December 31, 2022. The composite outcome of death or ADL dependency was assessed at 3 months after stroke.
RESULTS
Among 3614 individuals (mean [SD] age, 51.4 [13.1] years; 1910 female [52.9%]); 269 individuals (7.4%) developed stroke, of whom 120 individuals (44.6%) were dead or ADL dependent at 3 months. Intermediate (adjusted hazard ratio [aHR], 0.54; 95% CI, 0.38-0.77) and high (aHR, 0.47; 95% CI, 0.31-0.73) levels of leisure time physical activity were associated with a reduced incidence of stroke compared with low levels, as was an intermediate level of physical activity in transportation (aHR, 0.69; 95% CI, 0.52-0.93). High levels of leisure time physical activity were also associated with a reduced risk of poststroke death or ADL dependency (adjusted odds ratio, 0.34; 95% CI, 0.16-0.71) compared with low levels. Work time and household physical activity were not associated with stroke incidence or stroke outcomes. In exploratory subgroup analyses, there were interactions between physical activity and smoking (current smoking or smoking in the past year associated with stroke risk only in participants with low or intermediate physical activity: aHR, 2.33; 95% CI, 1.72-3.15) and family history of stroke (first-degree relative with a history of stroke associated with stroke risk only in participants with low or intermediate physical activity: aHR, 1.73; 95% CI, 1.27-2.38).
CONCLUSIONS AND RELEVANCE
In this study, leisure time and transport-related physical activities were associated with a reduced risk of stroke. A high level of leisure time physical activity was also associated with a lower risk of death or ADL dependency 3 months after stroke.
Topics: Humans; Sweden; Middle Aged; Female; Male; Exercise; Stroke; Aged; Adult; Prospective Studies; Incidence; Leisure Activities; Activities of Daily Living; Young Adult; Transportation
PubMed: 38809556
DOI: 10.1001/jamanetworkopen.2024.13453 -
Social Psychiatry and Psychiatric... Jan 2024Social exclusion is a multidimensional concept referring processes which restrict the ability of individuals or groups to participate fully in society. While social...
BACKGROUND
Social exclusion is a multidimensional concept referring processes which restrict the ability of individuals or groups to participate fully in society. While social exclusion has been used to explore patterns of disadvantage, it has been difficult to measure. Thus, we aimed to use population-based data to measure social exclusion and its constituent domains and to describe its distribution in England.
METHODS
We used data from Understanding Society in 2009/2010 develop a multidimensional measurement approach, replicated in 2018/2019. We defined five domains of social exclusion from the literature and expert consultation: material, relational, political, digital, and structural. In both waves, we identified measures for each domain, then conducted principal component analysis to identify the components. We generated domain scores and an overall social exclusion score. We described the distribution of social exclusion and its domains by sex, region, age, and ethnicity.
RESULTS
We found the level of social exclusion was higher in the youngest age group and decreased by age. We found elevated levels of overall social exclusion for ethnic minoritised groups including African, Arab, and Caribbean groups compared to White British groups. We found distinct patterns within each domain.
DISCUSSION
We developed an overall measure of social exclusion with five domains, and finding distinct patterns of social exclusion by age, ethnicity, and region which varied across domain. These findings suggest that attention should be paid to the separate domains due to different population distributions. This measurement approach moves beyond conceptual discussions of social exclusion and demonstrates the utility of a quantitative measure of social exclusion for use in health and social research.
Topics: Humans; England; Ethnicity; Social Isolation; Minority Groups; Age Factors
PubMed: 37160438
DOI: 10.1007/s00127-023-02489-x