Little is known about health-related quality of life (HRQoL) in familial intellectual disability. Economic evaluations of interventions for familial intellectual disability require HRQoL measured through utility data.

We aimed to estimate HRQoL in individuals with familial intellectual disability and their carers and spouses, and identify factors associated with HRQoL.

Families with at least one member with familial intellectual disability were recruited and completed a tailored questionnaire. HRQoL was measured with the Assessment of Quality-of-Life 8D for carers and spouses, and the Health Utilities Index 2 (HUI2) and 3 (HUI3) for individuals with intellectual disability.

A total of 108 carers and 35 spouses, caring for 171 individuals with intellectual disability, completed the survey. Health utility values for carers (0.58) and spouses (0.63) were significantly lower than age- and gender-adjusted population norms (0.8) (p < 0.05). Utility values for individuals with intellectual disability were 0.51 (HUI2) and 0.31 (HUI3), also significantly below age-adjusted norms (p < 0.05). In carers, approximately half reported a mental health condition, and multivariate regression showed that having a mental health disorder, financial stress and caring for someone with aggressive behaviour were associated with lower HRQoL. In individuals with intellectual disability, greater disability severity and need for full-time supervision were associated with lower HRQoL, whereas living with their carer was associated with higher HRQoL.

Familial intellectual disability is associated with significantly lower quality of life of individuals with intellectual disability, their carers and their spouses. HRQoL across the family may help guide planning of health and social support, and demonstrate to policy makers the additional support needs for these families.

Patients receiving oncology palliative care experience substantial psychological distress, emotional suffering, and complex symptom burden. This study aimed to evaluate the effects of a nursing-led predictive symptom management program incorporating selected laboratory indicators on psychosocial outcomes, symptom burden, quality of life, functional status, and clinical parameters among patients receiving oncology palliative care.

A quasi-experimental study was conducted on 150 adult cancer patients receiving palliative care in a governmental hospital in Al-Kharj, Saudi Arabia. Participants were assigned to an intervention group (n = 75) or a control group (n = 75). Effects were assessed at baseline and after a 6-week intervention by the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30, Edmonton Symptom Assessment System (ESAS), Hospital Anxiety and Depression Scale, Eastern Cooperative Oncology Group Performance Status, and selected routine laboratory parameters.

The intervention resulted in a significant decrease in total symptom burden compared with the control group (ESAS total score: 34.04 ± 8.86 vs. 41.51 ± 8.48; p < 0.001; Cohen’s d = 0.86) and significant improvement in pain scores (p = 0.003). No statistically significant between-group differences in anxiety, depression, quality of life, or functional status were observed post the 6-week intervention. Some laboratory parameters, including hemoglobin, sodium, potassium, and calcium, differed significantly between groups at specific follow-up time points. C-reactive protein correlated weakly and positively with symptom burden (r = 0.180; p = 0.028).

A nursing-led predictive symptom management program incorporating clinical assessment and laboratory monitoring may effectively reduce symptom burden and improve comfort among patients receiving oncology palliative care. However, longer interventions including structured psychosocial support as well as emotional evaluation and supportive care strategies may be required for psychological distress and quality-of-life outcomes.

This study aimed to examine the relationships between caregiver burden, depression, suicidal ideation, and quality of life among caregivers of patients hospitalized in an adult palliative care unit and to identify factors associated with depressive symptoms.

This descriptive cross-sectional study included 75 caregivers of patients hospitalized in the Adult Palliative Care Unit of Erzurum City Hospital. Data were collected using the Caregiver Strain Index, Hamilton Depression Rating Scale (HAM-D), Beck Scale for Suicide Ideation, (OPQOL)-Brief, and SF-36 Health Survey. Descriptive statistics, chi-square tests, Pearson’s correlation analysis, and multiple linear regression were performed.

High caregiver strain was reported by 52% of participants. According to HAM-D scores, 24% had mild depressive symptoms, while none had moderate or severe depression. All participants were classified as having low suicidal ideation risk. Significant correlations were observed among physical and mental health, caregiver burden, depression, suicidal ideation, and quality of life (p < 0.05). Mental health was strongly negatively correlated with depression (r = −0.607, p < 0.01) and was the only significant predictor of depressive symptoms in the regression model (β = −0.511, p < 0.001), explaining 40.5% of the variance.

Mental health was the strongest determinant of depressive symptoms among palliative care caregivers. Although all participants were categorized as having low suicidal ideation risk, continuous suicidal ideation scores were associated with greater caregiver burden, depression, and poorer quality of life. Routine mental health screening and psychosocial support for caregivers should be integrated into palliative care services.

Studies show that cancer patients consider place of death (POD) an important factor influencing quality of life (QoL) at the end of life. The objectives of this study were to identify characteristics of real-world non-small cell lung cancer (NSCLC) patients based on POD and investigate how changes in health-related QoL (HRQoL) relate to POD.

Newly updated data from a prospective single-center Danish cohort (NCT03870464) of patients with NSCLC who initiated immune checkpoint inhibitors (ICI) as monotherapy between April 1, 2018, and April 30, 2021, at the Department of Oncology, Odense University Hospital, were used for analyses. Clinical data were retrieved from electronic patient records. This included POD, which was categorized as home, hospice/palliative care unit, or hospital. HRQoL questionnaires were completed by patients prospectively at baseline and at predefined timepoints during treatment with ICI.

A higher percentage (63.6%) of patients dying at home were male, and a higher percentage dying in a hospice/palliative care unit were female (63%) (p = 0.041). Patients with hospital as POD had a statistically higher Global health status/QoL (GHS/QoL) at baseline (75.0; p = 0.034). Patients with home or hospice/palliative care unit as POD reported improved QoL during treatment with ICI, as opposed to patients with hospital as POD who had unchanged self-assessed QoL scores.

Sex, baseline GHS/QoL, and change in HRQoL during treatment with ICI differed between patients based on POD. The predictive value of this is unknown, suggesting the need for further research on this topic, as it remains clinically relevant.

CHD is the most common congenital anomaly worldwide. Advances in paediatric cardiology and cardiac surgery have transformed survival, shifting attention towards long-term psychosocial adaptation, neurodevelopment, quality of life, and relational well-being for children and their families.

This narrative review examines the psychosocial, developmental, familial, and relational dimensions of childhood CHD. Literature was identified through PubMed, Scopus, and Google Scholar, with thematic synthesis of evidence relating to psychosocial adaptation, parental mental health, neurodevelopment, resilience, belonging, peer relationships, and models of family- and relationship-centred care.

Childhood CHD is associated with repeated hospitalisation, developmental disruption, emotional distress, and lifelong uncertainty, with psychosocial effects extending beyond the child to parents, siblings, grandparents, peers, schools, and healthcare professionals. Families frequently experience anxiety, depression, chronic vigilance, and posttraumatic stress symptoms, while children and adolescents face challenges related to identity, belonging, and social participation. Supportive relationships, multidisciplinary psychosocial care, educational integration, peer support, and developmentally informed interventions may strengthen resilience and improve long-term adaptation. Patients with advanced heart failure requiring ventricular assist devices or heart transplantation, and their families experience additional uncertainty and psychological burden that warrant dedicated psychosocial support.

Psychosocial outcomes in CHD are shaped not only by medical care but also by the quality of the relationships surrounding the child. Relationship-centred care builds upon established family-centred care by recognising the broader relational ecosystem that influences development, resilience, participation, and quality of life. Future paediatric cardiology care should integrate longitudinal psychosocial, developmental, educational, and relational support alongside advances in medical treatment.

Patients with cancer on palliative treatment often have dynamic and multidimensional symptoms like pain, fatigue, anorexia, cognitive changes, and emotional distress that significantly impact functional capacity and quality of life. Traditional symptom management is largely reactive, based on patient self-report or clinician recognition after deterioration, leading to delayed interventions and avoidable suffering.

The aim of this systematic review was to review the evidence on nurse-led predictive symptom-management strategies in oncology palliative care, with a focus on the role of laboratory biomarkers and clinical judgment in the early detection of deterioration and better quality of care.

A systematic search was performed in PubMed, CINAHL, Scopus, Embase, and the Cochrane Library through November 2025. Keywords included “nurse-led,” “predictive symptom management,” “palliative care,” “oncology,” “biomarkers,” and “clinical judgment.” Both qualitative and quantitative studies were included in the review. Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram: 1,482 records identified, 346 duplicates removed, 1,136 screened, 128 full texts assessed, and 14 eligible studies selected based on PRISMA 2020 statements. The review protocol was registered in advance in the International Prospective Register of Systematic Reviews (PROSPERO; Registration No. CRD420261432500).

The included studies (Randomised Controlled Trials (RCTs), cohorts, modeling studies, and telehealth interventions) demonstrated that biomarkers such as C-reactive protein, neutrophil–lymphocyte ratio, albumin, ferritin, and electrolytes predicted symptom exacerbation and clinical decline. Nurse-led approaches including biomarkers with clinical assessment improved the management of symptoms, decreased emergency department visits, and improved continuity of care. Predictive models were promising but limited in clinical integration.

Nurse-led predictive approaches support a shift from reactive to proactive palliative care. Further research is needed to embed predictive tools into routine practice and to validate their effectiveness in real-world settings.

To describe the quality of life and moderate-to-vigorous physical activity level among children with CHD compared to children without CHD and to examine whether the association between these variables is modified by CHD or gender.

This cross-sectional analysis draws from a larger longitudinal study and included participants aged 5–10 years with or without any CHD and living in British Columbia, Canada. Parents/guardians completed the parent-proxy PedsQL 4.0 Generic Core Scales, providing a PedsQL Total Score out of 100. Children wore an Ametris GT3X accelerometer for 7 consecutive days to measure moderate-to-vigorous physical activity (min/day). Generalised linear regression models were used for group and gender comparisons. An adjusted linear regression model was used to examine the association between physical activity and quality of life.

166 children (41% girls; n = 78 CHD, n = 88 non-CHD) were included in the analysis. Children with CHD had poorer PedsQL Total Scores (p = 0.002) and accumulated less moderate-to-vigorous physical activity than the non-CHD group (p = 0.008). Among children with CHD, girls accumulated less moderate-to-vigorous physical activity than boys (p < 0.001) and had poorer PedsQL Total Scores than boys (p = 0.035). The association between moderate-to-vigorous physical activity (min/day) and PedsQL Total Score was significantly modified by CHD (p = 0.012), with a positive association found for children with CHD (β = 0.17 [95% confidence interval: 0.04, 0.29], p = 0.011), which was not modified by gender (p = 0.241).

These findings highlight the need to support the physical and psychosocial health of children with CHD, particularly girls with CHD.

Psychosocial challenges are well-described among adults with CHD. Limited literature explores the impact of adults with CHD interventions on patient-reported outcomes. We examined changes in patient-reported mental and physical health status 30 days after a diagnostic or interventional adult with CHD procedure.

A prospective registry captured patient-reported physical and mental health through the Patient Reported Outcomes Measurement and Information System Global Health Questionnaire before and 30 days after the procedure. Global mental and physical health scores were derived and standardised, with 50 points as the mean of the general U.S. population and a minimal important change of 3 points.

In our sample of 160 patients, patent foramen ovale closure and diagnostic catheterisation of complex CHDs were the most common procedures (44.4% and 35.6%, respectively). Palpitations were a commonly reported symptom before the procedure (21.8%), with increasing proportions at 30-days (34.0%, p = 0.003). At baseline, the median global mental health and global physical health scores were 48.3 [IQR = 43.5–53.3] and 47.7 [IQR = 39.8–54.1], respectively, within one standard deviation of the general U.S. population; there were no significant differences from baseline at 30 days. However, these differences were not uniform; approximately 53% and 72% of patients had a clinically meaningful improvement or decline in their global mental health or global physical health score (>minimal important change of 3).

In this novel investigation, patients experienced both improvement and decline in mental and physical self-reported health after adults with CHD interventions, indicating considerable variability in short-term outcomes. Future analyses should explore predictors of divergent changes in health scores after procedures, to promote patient-centred care.

Professional bereavement is a frequently overlooked yet significant experience among nurses, particularly in contexts involving serious illness and end-of-life care. Its impact on professional quality of life remains insufficiently understood. This study aimed to examine the relationship between professional bereavement and professional quality of life among nurses.

This descriptive correlational study was conducted with 176 nurses working in three hospitals in Ankara, Türkiye, between January and June 2022. Data were collected using the Professional Bereavement Scale and the Professional Quality of Life Scale. Pearson correlation and multiple linear regression analyses were performed to examine relationships and predictive effects.

Nurses’ short-term reactions to professional bereavement were moderate, whereas cumulative effects were above average. Nurses with postgraduate education had significantly higher accumulated global change scores than those with a bachelor’s degree. Short-term bereavement reactions showed weak positive correlations with compassion satisfaction, burnout, and compassion fatigue, whereas cumulative changes showed moderate positive correlations with compassion satisfaction and compassion fatigue. Regression analysis indicated that both short-term and cumulative dimensions of professional bereavement significantly predicted professional quality of life, with cumulative changes explaining 30–38% of the variance in compassion fatigue.

Professional bereavement is a significant predictor of nurses’ professional quality of life, highlighting the need for bereavement-focused support to promote psychological well-being and sustainable care. This study uniquely demonstrates differential effects of short-term versus cumulative professional bereavement on compassion satisfaction, burnout, and compassion fatigue and suggests that postgraduate education may paradoxically increase vulnerability to cumulative grief among nurses.

Behavioural and psychological symptoms of dementia (BPSD), particularly agitation, are common among people living with dementia, negatively affecting their psychological well-being and quality of life. Non-pharmacological interventions such as therapeutic gardens may offer a holistic approach to managing these symptoms.

This study aimed to investigate whether participation in a multimodal, dementia-specific therapeutic garden intervention could reduce BPSD, with a particular focus on agitation, and improve psychological well-being among people with dementia.

A naturalistic observational study was conducted with 24 residents of a dementia-friendly garden. Participants engaged in tailored, nature-based therapy over 6 months. The intervention was adapted to individual cognitive and physical abilities and included motor, sensory and social activities within the participants’ familiar living environment. Standardised assessments of BPSD and psychological well-being were administered, including evaluations reported by relatives.

The intervention was associated with a significant reduction in agitation, as measured by the non-cognitive subscales of the Alzheimer’s Disease Assessment Scale (p < 0.05). Furthermore, reduced agitation was linked to improved psychological well-being among participants.

The findings suggest that multimodal therapeutic gardens can serve as an effective non-pharmacological intervention in reducing agitation and supporting psychological well-being in people with dementia. This study adds to the growing evidence that therapeutic gardens could contribute to the functional and emotional health of individuals living with dementia.

Patients with idiopathic pulmonary fibrosis (IPF) and progressive pulmonary fibrosis (PPF) frequently experience respiratory symptoms and declines in activities of daily living (ADL) and quality of life (QOL). However, effective treatment and palliative care strategies remain limited. This study aimed to clarify physical and psychological distress and to evaluate 1-year symptom changes in patients with IPF and PPF.

Consecutive patients with IPF or PPF were recruited and evaluated at registration (T0), 26 weeks (T1), and 52 weeks (T2). Symptoms, ADL, QOL, depressive condition, laboratory findings, and other factors were assessed throughout the 52-week follow-up.

Of the 70 patients, 32 had IPF and 38 had PPF. Repeated-measures analysis of variance showed that dyspnea in patients with IPF worsened from T1 to T2 (p = 0.02). In contrast, cough, which is one of the major symptoms in PPF worsened from T0 to T1 (p = 0.01) and T0 to T2 (p = 0.02). QOL in patients with PPF also declined from T0 to T1 (p = 0.03).

Patients with IPF and PPF demonstrated several clinical signs and symptoms. In this 1-year follow-up study, dyspnea tended to be worse in patients with IPF and cough in PPF patients, and QOL was temporarily worse in PPF patients. Respiratory symptoms are directly related to the patient’s daily life and lead to reduced QOL. Therefore, further long-term studies in this population are required.

Weight gain is a common, distressing side-effect of antipsychotic medication prescribed for people with severe mental illness. National guidance for antipsychotic-induced weight gain (AIWG) encourages early intervention and physical health monitoring; healthcare professionals (HCPs) often struggle to implement these recommendations in routine care.

To explore how HCPs understand and respond to AIWG for patients.

This realist evaluation, part of the RESOLVE project, builds on a realist synthesis. Thirty HCPs participated in realist interviews. A programme theory with nine context–mechanism–outcome configurations (CMOCs) was generated, explaining how HCPs perceive non-pharmacological care provision for patients with AIWG. Clinical and lived experience stakeholders reviewed and refined the theory and CMOCs.

The nine CMOCs spanned three areas: (a) systemic and professional challenges; (b) strategies to enhance individualised and meaningful support; and (c) the role and limitations of non-professional support. HCPs described how lack of training, siloed services and system-level constraints limited their ability to offer integrated care. They highlighted the importance of relational continuity, early and tailored conversations, and alignment with patients’ values and motivations. Peer and family support were valued, but structural barriers undermined their consistent implementation.

AIWG was experienced as compromising professional values for HCPs working in mental health settings. Person-centred care was often undermined by fragmented systems, role ambiguity and insufficient training. These issues require investment in professional development, structural integration, and relationship-based approaches that support timely, collaborative action.

This study examined the associations among supportive care needs, perceived social support, and quality of life among family caregivers of patients with advanced cancer and explored caregivers’ lived experiences of the caregiving process.

A convergent mixed-methods study was conducted at a university oncology center in Türkiye. Quantitative data were collected from 328 family caregivers of patients with advanced cancer using the Supportive Care Needs Survey–Caregivers (SCNS-C), the Multidimensional Scale of Perceived Social Support (MSPSS), and the SF-12 Health Survey. Qualitative data were obtained through semi-structured interviews with 22 caregivers and analyzed using Colaizzi’s phenomenological approach.

Higher supportive care needs were significantly associated with poorer physical and mental quality of life, whereas higher perceived social support was significantly associated with better quality of life. Supportive care needs demonstrated negative correlations with both physical and mental health-related quality of life, while perceived social support demonstrated positive correlations with these outcomes (all p < .05).

Impacts of the Caregiving Process and Emotional and Psychological Dimensions of Caregiving. Caregivers described disruptions in family and social life, financial strain, unmet support needs, emotional distress, reliance on family and community support, religious coping, and fluctuating feelings of hope and despair.

The findings suggest that supportive care needs and perceived social support are associated with caregiver well-being. Integrating caregiver assessment, psychosocial support, and interventions into palliative care services may help address unmet needs and improve quality of life among caregivers of advanced cancer patients.

Millions of Ukrainians displaced since 2022 experience high rates of depression, anxiety and distress, with major barriers to in-person mental healthcare. Immersive avatar-based virtual reality environments may offer scalable psychosocial support while preserving key therapeutic elements.

To evaluate the efficacy of avatar-based virtual reality support groups versus in-person support groups and a waitlist control among Ukrainian refugees in Romania.

In this 3-arm randomised controlled trial, 156 participants were assigned to avatar virtual reality groups, in-person support groups or a waitlist control. Assessments were conducted at baseline, mid-intervention, post-intervention and at 3-month follow-up. Primary analyses used clustered intention-to-treat longitudinal mixed models with cluster-robust standard errors. Complementary baseline-adjusted analysis of covariance and sensitivity analyses were also performed.

Most between-group comparisons favoured the interventions but many lacked statistical significance, probably owing to attrition and clustering. In-person groups showed the strongest benefits, in particular, they were associated with greater perceived social support versus waitlist at post-intervention and reduced anxiety in end-point analyses. Avatar virtual reality effects were smaller and non-significant. Effects were largely attenuated at follow-up. Sensitivity analyses excluding participants with high levels of baseline trauma identified stronger treatment effects.

In-person support groups demonstrated the strongest short-term psychosocial benefits, especially for perceived social support. Delivery of the avatar virtual reality intervention proved feasible, but the intervention did not show consistent superiority or equivalence to in-person groups. The findings support further refinement of immersive interventions with improved retention strategies and trauma-sensitive adaptations, particularly across populations with varying digital familiarity.

Once-daily INGREZZA® (valbenazine), a selective vesicular monoamine transporter 2 (VMAT2) inhibitor, is approved for tardive dyskinesia (TD) and Huntington’s chorea. KINECT-PRO™ (NCT05859698) is currently the only study to assess the effects of a VMAT2 inhibitor (valbenazine) on quality of life (QoL) and functionality in patients with TD using multiple validated patient-reported outcomes (PROs).

Adults with mild-to-severe TD movement severity (per Abnormal Involuntary Movement Scale [AIMS] item 8) and awareness of TD with mild-to-severe associated distress (per AIMS item 10) received open-label valbenazine (40, 60, or 80 mg) for 24 weeks. Primary endpoints included changes from baseline (CFBs) at Week 24 in 3 validated QoL/functionality PROs: Tardive Dyskinesia Impact Scale (TDIS), the only psychometrically validated PRO developed specifically for TD; Sheehan Disability Scale (SDS); and EuroQoL Group’s EQ-Visual Analogue Scale (EQ-VAS). Secondary endpoints included CFB in AIMS total score.

Substantial and clinically meaningful improvements in patient-reported QoL/functionality and clinician-reported TD severity were observed throughout treatment with valbenazine in the overall study population and regardless of psychiatric diagnosis (mood disorders, psychotic disorders) or TD severity at baseline (mild, moderate/severe). At Week 24 (N = 45), mean CFBs were: TDIS (−8.0); SDS Social/Leisure (−2.3); SDS Family/Home (−1.6); EQ-VAS (+13.1); AIMS (−6.8). Previously established minimal clinically important difference (MCID) thresholds for TD were exceeded for TDIS and AIMS. Safety and tolerability were consistent with valbenazine’s known profile.

KINECT-PRO is the first study of its kind, and valbenazine is the only VMAT2 inhibitor to demonstrate QoL/functional improvements in patients with TD across multiple validated PROs.