People with advanced cancer express the need for support to balance everyday activities to experience quality of life. The Balance, Activity and Quality of Life Intervention was developed to address this need using a resource- and activity-oriented approach that integrates rehabilitation into palliative care. To inform a future full-scale evaluation, the objective of this feasibility study was to test if the selected outcome measures of health-related quality of life, including physical function and fatigue, and occupational balance could capture any possible changes of the Balance, Activity and Quality of Life Intervention in people with advanced cancer.

Repeated-measurement feasibility study without a control group (ClinicalTrials.gov NCT04772690). Twenty-two home-living adults with advanced cancer participated in the study. The intervention was delivered at the research clinic of REPHA, The Danish Knowledge Centre for Rehabilitation and Palliative Care. Data regarding health-related quality of life, including physical function and fatigue, and occupational balance were collected with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core-30 and the Occupational Balance Questionnaire at baseline, after a 5-day intervention stay and at 6- and 12-week follow-up.

The outcome measure of health-related quality of life captured a statistically significant improvement (p = 0.0046) after the 5-day intervention stay, with 64% of the participants experiencing clinically relevant improvements. No other statistically significant changes were found. Missing data were minor.

Health-related quality of life is a promising outcome measure to capture the possible changes of the Balance, Activity and Quality of Life Intervention. The results indicate that a resource- and activity-oriented approach may be helpful when integrating rehabilitation into palliative care.

Congenital heart disease (CHD) is a condition that can significantly impact health-related quality of life due to the need for long-term follow-up and treatment. The purpose of this study was to analyse the quality of life of children diagnosed with CHD and to assess the relationship between the disease and their physical and mental well-being.

The study involved 180 patients and 180 healthy controls. Both groups were divided into three age categories (5–7 years, 8–12 years, and 13–18 years), with 60 children in each age group. The researchers administered the Pediatric Quality of Life Inventory (PedsQL) to the participants, taking into account their age.

Comparisons between the patient and control groups showed that the patient group had significantly lower scores than the control group in terms of total quality of life scale score, physical health score, and psychosocial health score of the Pediatric Quality of Life Inventory (p < 0.001, p < 0.001, and p < 0.001). Quality of life was also compared between patients receiving and not receiving medication treatment. Patients receiving medication treatment had lower scores for total quality of life score, physical health score, and psychosocial health score of the Pediatric Quality of Life Inventory compared to the control group (p < 0.001, p = 0.005, and p < 0.001).

Children with CHD experience a negative impact on their quality of life. Given the extended life expectancy resulting from new treatment options, it is important to monitor these children both physically and psychosocially and to implement activities aimed at improving their quality of life.

Explore humanitarian healthcare professionals’ (HCPs) perceptions about implementing children’s palliative care and to identify their educational needs and challenges, including learning topics, training methods, and barriers to education.

Humanitarian HCPs were interviewed about perspectives on children’s palliative care and preferences and needs for training. Interviews were transcribed, coded, and arranged into overarching themes. Thematic analysis was performed using qualitative description.

Ten healthcare workers, including doctors, nurses, psychologists, and health-project coordinators, were interviewed. Participants identified key patient and family-related barriers to palliative care in humanitarian settings, including misconceptions that palliative care was synonymous with end-of-life care or failure. Health system barriers included time constraints, insufficient provider knowledge, and a lack of standardized palliative care protocols. Important learning topics included learning strategies to address the stigma of serious illness and palliative care, culturally sensitive communication skills, and pain and symptom management. Preferred learning modalities included interactive lectures, role-play/simulation, and team-based case discussions. Participants preferred online training for theoretical knowledge and in-person learning to improve their ability to conduct serious illness conversations and learn other key palliative care skills.

Palliative care prevents and relieves serious illness-related suffering for children with life-threatening and life-limiting conditions; however, most children in humanitarian settings are not able to access essential palliative care, leading to preventable pain and suffering. Limited palliative care knowledge and skills among HCPs in these settings are significant barriers to improving access to palliative care. Humanitarian HCPs are highly motivated to learn and improve their skills in children’s palliative care, but they require adequate health system resources and training. These findings can guide educators in developing palliative care education packages for humanitarian HCPs.

Caring for children with solid tumors (STs) can impact caregiver’s physical and mental health. Caregiver mastery, which influences psychological well-being, is vital in improving outcomes for both caregivers and children. The study aimed to investigate the relationship between caregiver mastery, anxiety, depression, fear of disease progression (FoP), caregiver burden, and the quality of life (QOL) of children with ST.

This cross-sectional study was conducted from June 2022 to April 2023 at a Grade A tertiary hospital in Shandong. Family caregivers of children with ST completed several validated measures, including the Pediatric Quality of Life Inventory (PedsQL) 3.0 Cancer Module, the Fear of Progression Questionnaire-parent version (FoP-Q-SF/PR), the Zarit Burden Interview Scale (ZBI), the hospital anxiety and depression scale (HADS), and the Caregiver Mastery Scale. Multiple linear regression analyses assessed the relationships between FoP, caregiver burden, anxiety, depression, caregiver mastery, and children’s QOL. Results were expressed as β and 95% confidence intervals (CIs).

A total of 454 caregivers participated. Caregiver mastery was positively correlated with children’s QOL (β = 0.80, 95% CI: 0.20 to 1.39). Depression (β = −0.64, 95% CI: −0.83 to −0.45), anxiety (β = −0.67, 95% CI: −0.85 to −0.49), caregiver burden (β = −1.20, 95% CI: −1.60 to −0.80), and FoP (β = −0.04, 95% CI: −0.05 to −0.03) were negatively related to children’s QOL. Caregiver mastery moderated the associations between depression, caregiver burden, FoP, and children’s QOL, while also improving the effect of mild anxiety on QOL.

The study underscores the importance of fostering caregiver mastery to mitigate the negative impact of caregiver distress on children’s QOL and improve outcomes for both caregivers and children with solid tumors.

Caregiver mastery moderates the effects of anxiety, depression, FoP, and caregiver burdenon children’s QOL. Supporting caregiver mastery can alleviate caregiver burden and enhance both caregiver and child well-being.

This study aims to validate the Palliative and Complex Chronic Pediatric Patients QoL Inventory (PACOPED QL), a new quality-of-life (QoL) assessment tool for pediatric palliative patients with complex chronic conditions. The goal is to create a comprehensive and inclusive instrument tailored to this unique population, addressing the gap in existing tools that do not meet these specific needs.

The validation process included a literature review and consultations with experts. A pilot study refined the items, followed by a cross-sectional study involving pediatric palliative patients and their caregivers. Statistical analyses, such as Cronbach’s alpha for internal consistency and exploratory factor analysis for structural validity, were utilized.

The PACOPED QL, comprising 50 items across 8 domains and 6 subdomains, demonstrated strong reliability with Cronbach’s alpha and Guttman split-half reliability both exceeding .9. Validity assessments confirmed its suitability for children with complex illnesses. The tool was refined through expert consultations and pilot testing, reducing items from an initial 85 to a final 50, ensuring relevance and clarity.

The PACOPED QL shows strong reliability and validity in assessing QoL in pediatric palliative patients. Its comprehensive structure makes it a promising tool for clinical practice and research, addressing a critical need for a tailored assessment in this population. The instrument’s robust psychometric properties indicate its potential utility in improving the QoL assessment and care for children with life-threatening illnesses. Further studies are encouraged to confirm its effectiveness across various settings.

We sought to compare whether quality of life (QOL) in patients with subjective cognitive impairment (SCI) who performed normally on a neuropsychological battery significantly differed from those diagnosed with mild cognitive impairment (MCI), Alzheimer’s disease (AD) or non-Alzheimer’s dementia (non-AD) at initial assessment in a Rural and Remote Memory Clinic (RRMC).

610 patients referred to our RRMC between 2004 and 2019 were included in this study. We compared self-reported and caregiver-reported patient QOL scores in those with SCI (n = 166) to those diagnosed with MCI (n = 98), AD (n = 228) and non-AD (n = 118).

Patients with SCI self-reported significantly lower QOL compared to patients with AD. Interestingly, the reverse was seen in caregivers: SCI caregivers rated patient QOL higher than AD caregivers. Patients with SCI also reported lower QOL than patients with MCI. SCI caregivers reported higher patient QOL than their non-AD counterparts. Caregiver-rated patient QOL was higher in those with MCI compared to AD. Patients with MCI self-reported higher QOL scores compared to patients with non-AD dementias. Similarly, MCI caregivers reported higher patient QOL than non-AD caregivers. No other comparisons were statistically significant.

Although they lacked clinically significant cognitive deficits, patients with SCI self-reported significantly lower QOL than patients with MCI and AD. Conversely, caregiver-reported patient QOL was higher for patients with SCI than for patients with AD and non-AD. This shows that SCI seriously impacts QOL. More research is needed on how we can better support patients with SCI to improve their QOL.

This study aims to assess the quality of life (QoL) of earthquake survivors who experienced 2 major earthquakes in Türkiye on February 6, 2023, with different measurement tools.

The study was conducted in 2 centers with a total of 467 participants. For QoL measurement, face-to-face Euroqol EQ-5D-5L, Euroqol Visual Analog Scale (EQ-VAS), and Nottingham Health Profile (NHP) measurement tools were used.

On the EQ-5D-5L scale, most of the participants stated that they struggled the most with the anxiety/Depression dimension. In NHP, the highest mean score is in the Emotional Reaction section. Females and the 55+ age group were found to have worse QoL. A linear and moderate correlation was found between the EQ-5D-5L index value and the EQ-VAS score; an inverse, weak, or moderate correlation was found between the EQ-VAS score and the sections of the NHP scores; an inverse and strong correlation was found between the Nottingham Health Profile Distress (NHP-D) score and the EQ-5D-5L index value.

The findings obtained with the measurement tools used in this study reveal various dimensions affecting the QoL of different cohorts. In addition, the study provides important evidence for policies to be developed to increase post-earthquake QoL.

The knowledge of students’ quality of life and post-traumatic stress disorder levels, investigation of the relationship between them, and taking measures are essential in terms of guiding the necessary interventions. This study was conducted to determine the quality of life and post-traumatic stress disorder levels of midwifery students experiencing an earthquake.

This descriptive and correlational study was conducted with 363 midwifery students who had experienced the Kahramanmaras, Türkiye earthquake. Data were obtained using a Descriptive Information Form, the PTSD-Brief Scale, and the World Health Organization Quality of Life Scale (WHOQOL-BREF).

The rate of post-traumatic stress disorder in the sample studied (n = 363), which consisted of midwifery students who would work in the field of health, was 21.5% 2 months after the earthquake. The multiple linear regression analysis indicated that factors predicting post-traumatic stress disorder following the earthquake were quality of life score related to physical and environmental domains, damage status of the house, presence of family history of depression, and smoking status.

This study, which was conducted 2 months following the earthquakes, showed that living spaces had an impact on the occurrence of post-traumatic stress disorder symptoms.

The population of adult CHD patients is continuously increasing. The underlying CHD affects performance and prognosis, but also has a significant impact on quality of life, psychosocial behaviour, anxiety and emotional disturbances. This study analyzes these parameters of patients after one or more heart operations and the possible psychological effects of medical and psychosocial complications at the Department of Cardiology of the Kepler University Hospital Linz.

A total of 81 subjects participated in the questionnaire survey of the Institute of Cardiology and Clinical Psychology during their annual cardiological check-up. Of these, 80 participants were included in the study and three showed a mild CHD, 49 a moderate one, and 28 a severe one. This study has an exploratory design to assess possible stress factors and limitations in quality of life. For this purpose, a self-administered sociodemographic questionnaire and three standardised questionnaires were used. In summary, the quality of life of adult CHD is considered depending on the severity of the symptoms and compared with the healthy population. Differences in this regard are observed in individuals with lower symptom severity, who report higher psychological well-being. Sex differences are observed in physical role function and physical functioning.

Based on the results, regular repetitions of the study, as well as continuous psychological and psychosocial support, are necessary, since challenges are predictable with the increasing age of adult CHD patients and since the upholding of good quality of life and dealing with difficult life circumstances must be supported.

This study aimed to explore the multifaceted experiences of families with children and adolescents enrolled in the pediatric palliative care (PPC) program, with a particular emphasis on understanding their perspectives regarding the quality and effectiveness of care provided. Our goals included exploring emotional, social, and practical caregiving dimensions within the PPC context to address gaps and find areas for improvement. The objectives encompassed an exploration of the perceived effects on physical, emotional, social, and spiritual dimensions, an investigation into pre-PPC inclusion experiences, and an identification of limitations and potential areas for enhancement within the program.

Using a qualitative descriptive approach with a phenomenological lens, we engaged 6 primary caregivers through semi-structured interviews, employing theoretical convenience sampling. Analysis involved meticulous transcription, alphanumeric coding, and thematic categorization using Atlas.ti 8.0® software.

Consistently echoed across interviews were the positive impacts on family dynamics, characterized by a sense of tranquility, enhanced patient care, and substantial caregiver support. Emotional well-being improvements were marked by elevated mood, reduced anxiety, and a restored sense of normalcy. Noteworthy challenges identified encompassed communication gaps among health-care professionals, limited-service availability, and perceived constraints in home care.

The study underscores the profound positive influence of the PPC program on the perceived quality of life for families navigating the complexities of caring for children with life-limiting illnesses. The findings underscore the paramount importance of holistic, family-centric care and underscore the imperative to address caregiver needs comprehensively to mitigate the risk of burnout. The identified challenges serve as signposts for refining communication strategies, expanding service provisions, and augmenting support structures within the PPC program. Overall, the study highlights the profound positive impact of the PPC program on family well-being, while also identifying areas for program enhancement, particularly in communication and service availability.

Quality of life is decreased in bipolar disorders (BD) and contributes to poor prognosis. However, little is known about the causal pathways that may affect it. This study aimed to explore health-related QoL (HRQoL) in BD and investigate its relationship with cognition and psychosocial functioning.

This multicenter cross-sectional study used a neuropsychological battery to assess five cognition domains. Functioning was evaluated using global and domain-based tools, and health-related HRQoL was assessed using the EQ-5D-3L. Structural equation modeling was used to test whether the association between cognition and HRQoL would be mediated by functioning in BD while controlling for covariates such as residual depression, anxiety, antipsychotic medication, and psychotic features.

We included 1 190 adults with euthymic BD. The model provided a good fit for the data. In this model, the direct effect of cognition on HRQoL was not significant (β = − 0.03, z = −0.78, p = 0.433). The total effect of cognition on HRQoL was weak, albeit significant (β = 0.05, z = 3.6, p < 0.001), thus suggesting that cognition affected HRQoL only indirectly through functioning. Anxiety was associated with decreased functioning (β = −0.27, z = −7.4, p < 0.001) and QoL (β = −0.39, z = −11.8, p < 0.001).

These findings suggest that improving cognition may not directly lead to a higher HRQoL. Cognitive remediation is expected to improve HRQoL only through functioning enhancement. They also reveal the potential importance of functional remediation and reduction of comorbid anxiety symptoms in improving HRQoL in BD.

Older adults often have a heightened awareness of death due to personal losses. In many low- and middle-income countries, including Nigeria, conversation about end-of-life issues and advanced care planning (ACP) among older adults is gradually emerging. Our study explored older adults’ knowledge and perceptions towards advanced directives and end-of-life issues in a geriatric care setting in Nigeria.

A cross-sectional study was conducted among older adults (aged ≥60 years) in a geriatric outpatient clinic. Data were collected using an interviewer-administered, semi-structured questionnaire, tested at a significance level set at alpha 0.05.

The study included 204 participants with a mean age of 71.3 ± 7.2 years, predominantly female (67.2%). Few of the participants have heard about end of life (20.1%), living will (19.1%), power of attorney (19.6%), and ACP (25.9%). About 29.9% of the respondents considered having a living will, of which about 34.4% have written one. Only 23 (11.3%) would consider discussing ACP in the future, 32 (15.7%) would discuss place of care, and 30 (14.7%) place of death. Preparedness for end of life and knowledge of ACP was higher among males, those with formal education, and those with good self-rated health (p < 0.05).

The study highlighted gap in awareness and engagement in ACP among older adults in a country like Nigeria. This lack of knowledge can lead to inadequate end-of-life care and unpreparedness for critical health decisions for older adults in Africa. Thus, improving awareness and understanding of ACP can empower older adults, ensuring their end-of-life preferences are respected, enhancing the quality of care, and reducing the emotional and financial burden on families.

To determine the associations among iron status, depressive/anxiety symptoms, and quality of life (QoL) throughout pregnancy.

This longitudinal study recruited participants in their 1st trimester (< 13 weeks; n=116) and followed in their 2nd (n=71) and 3rd (n=71) trimesters. Sociodemographic, food security, anxiety, depressive symptoms, and QoL questions were collected. Hemoglobin (Hb), ferritin (Ft), and transferrin saturation (TSAT) were determined. Women were categorized as iron improvers or non-improvers based on changes in iron status. Associations were assessed using difference-in-difference analyses.

Cape Coast, Ghana between October 2017 to September 2018.

Pregnant women, 18-38 years.

Improvement in Ft levels from the 1st to 2nd trimester were associated with reduced depressive symptoms (-2.96 vs -0.58, p=0.028), and higher overall QoL (13.99 vs 1.92, p=0.006) particularly role physical (23.32 vs -2.55, p=0.025) and role emotional (27.50 vs 10.06, p=0.025) subscales. Improvement in Hb levels during the same period were linked to less anxiety, particularly fear factor (-2.62 vs -0.51, p=0.020); and worsened physical health aspect of QoL (-21.80 vs -3.75, p=0.005). Improvement in TSAT levels from 2nd to 3rd trimester were associated with increased total anxiety (1.56 vs -0.64, p=0.030) and panic factor (0.45 vs -0.26, p=0.004) and decreased total QoL (-1.08 vs 7.94, p=0.017), specifically role physical (-10.98 vs 11.93, p=0.018).

Increases in iron status from first to second trimester were related to improvements in psychosocial wellbeing, implying potential benefit of iron supplementation on affect in early pregnancy. Larger studies are needed to confirm these findings.

The coronavirus pandemic has caused concern in the community, especially in patients. Spirituality, hopelessness, and quality of life have an impact on the management of the process in cancer patients during these crisis periods. To investigate COVID-19 anxiety’s mediating role in hopelessness’ relationships with the quality of life and spiritual well-being among cancer patients.

This study used a cross-sectional design to collect data from cancer patients using self-administered questionnaires. The study recruited 176 cancer patients receiving treatment at a university hospital. The participants completed measures of spiritual well-being, COVID-19 anxiety, hopelessness, and quality of life. Following preliminary analyses, a mediation model was analyzed using the PROCESS macro for SPSS, with the bootstrap method applied (model 4).

The results showed that spiritual well-being was negatively associated with COVID-19 anxiety and hopelessness, and positively associated with the quality of life. COVID-19 anxiety was associated positively with hopelessness, and negatively with the quality of life. Moreover, COVID-19 anxiety mediated the relationship between hopelessness, spiritual well-being, and quality of life.

This study provides evidence for COVID-19 anxiety’s mediating role in the relationship between spiritual well-being and quality of life and hopelessness among cancer patients. The findings suggest that interventions aimed at reducing COVID-19 anxiety may be effective in reducing hopelessness among cancer patients, by promoting higher levels of spiritual well-being and improving quality of life.