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Although prior research has identified common attributes of a Good Death across cultures, few studies have simultaneously incorporated the views of patients, family caregivers, and physicians – particularly in Latin America, where structural barriers to palliative care persist. This study examines how these stakeholders in Mexico perceive and designate what constitutes a Good Death, aiming to identify its core components and cultural particularities.
Methods
Qualitative interviews were conducted with 14 advanced-stage oncologic and nononcologic patients receiving home-based palliative care, 12 family caregivers, and 21 physicians. Data were analyzed using principles of generic purposive sampling and thematic analysis.
Results
The most frequent designation for a Good Death was “Dignified and Peaceful Death,” perceived as a multidimensional and multitemporal process. Five core domains emerged: physical, psychological, interpersonal, spiritual, and structural. These dimensions manifested across distinct phases – before death (as preparation), during death, and after death.
Significance of results
A Dignified and Peaceful Death begins when individuals become aware of their mortality and encompasses cultural, emotional, and structural elements that transcend physical death. This perspective suggests that end-of-life care should respond not only to biomedical needs but also to broader existential and relational dimensions that shape patient and family experiences in resource-limited settings.
Studies have consistently found that up to 20% of people with anorexia nervosa experience a persistent illness, resulting in considerable psychosocial impairment, morbidity and mortality. This has been variously termed severe and enduring anorexia nervosa or longstanding anorexia nervosa (L-AN). Conflicting findings have hindered progress in distinguishing the nosological features of individuals with persistent illness.
Aims
This study aims to investigate the putative defining features of individuals reporting symptoms of L-AN, including consideration of their treatment trajectory.
Method
This cross-sectional study, drawing from a mixed-methods design, utilised a sample of symptomatic individuals who reported experiencing eating disorder treatment (n = 208). Several qualitative and quantitative data strands (a–c) were embedded within a single, self-report questionnaire measuring eating disorder severity and treatment experiences. Between-group comparisons were used to compare those of shorter (<3 years) and longer (>7 years) duration of illness.
Results
No between-group differences were found in measures of severity, including body mass index (kg/m2), eating disorder symptom scores, psychological distress or perceived health-related quality of life. However, those with L-AN had a significantly higher number of mental and physical health comorbidities, longer treatment delay, greater number of episodes of treatment and poorer subjective ratings of their treatment experiences.
Conclusions
Delineating L-AN by severity may be inappropriate; anorexia nervosa of any duration is a severe illness. This study suggests that treatments, or lack thereof, may have an inadvertent impact on duration of illness. Future focus needs to be on reconceptualising L-AN and its treatments. Treatment refinements informed by lived experience are proposed.
Medical Royal Colleges publish obituaries to record and celebrate the lives of colleagues after their deaths. Who is included in this roll of honour, the preferred literary style, and the organisation of the commissioning and publishing all vary between colleges. Since obituaries have fashions, shaped by culture and practical considerations, it is worthwhile, from time to time, for institutions to review the approaches they take. This paper draws on practices past and present, including those of national newspapers and Royal Colleges, to stimulate further discussion on the subject.
There are various methodologies to assess the well-being and thriving of animals in care. This chapter provides a comprehensive overview of both behavioural and physiological metrics used to evaluate animal welfare. The chapter begins with the specifics of behavioural assessments, discussing the reliability of observers and the use of anecdotal versus ethological observations to gather meaningful data about animal behaviour. Physiological measures are also extensively covered, including routine veterinary examinations, body condition scoring, and assessments of an animal’s quality of life. These measures are crucial for providing a complete picture of an animal’s health and well-being. The chapter emphasises the need for a holistic approach to animal welfare, integrating both observed behaviours and physiological data to ensure that animals are not just surviving but also truly thriving under human care.
Children and young people are increasingly being referred to specialist gender services, and available data on their characteristics are limited. The Longitudinal Outcomes of Gender Identity in Children (LOGIC) study is the first independently funded UK research programme to comprehensively assess quality of life, autism, service use and the psychological well-being of children and adolescents referred to gender services.
Aims
The aim of this baseline assessment is to obtain a multidimensional profile of children and young people on the waiting list for the gender service.
Method
Data were obtained from 617 parents and caregivers and 565 children and young people, representing a quarter of those on the waiting list eligible to participate. Participants were assessed across a range of domains including gender identity, gender dysphoria, mental health and well-being, autism, physical health, service use and quality of life.
Results
Gender dysphoria rates among our sample were high, particularly among adolescents. Almost all participants had socially transitioned. Compared with children, adolescents reported significantly poorer quality of life, particularly in relation to self-perception and psychological well-being. Relative to reference population samples, our cohort demonstrated elevated levels of mental ill health and reduced quality of life, although the magnitude of these differences varied. In addition, 59% of young people aged 11 years or over reported self-harm in the past year. Over half of the cohort had received a psychiatric diagnosis, and co-occurrence rates were high. A third of the cohort was either diagnosed with autism or undergoing assessment for autism.
Conclusions
Self-perception and psychological well-being represent particularly impaired quality of life dimensions for adolescents on the waiting list for the UK’s gender service. Complementing existing knowledge, differences emerged between young people and children, reflecting that the onset of puberty is a critical factor in the well-being of this cohort.
Due to frailty, chronic health issues, limited mobility, dependence on assistive devices, and polypharmacy, the geriatric population is more susceptible to the adverse effects of earthquakes. The aim of this study was to determine the factors affecting the quality of life of older adults who experienced the Kahramanmaraş-centered earthquakes in Türkiye on February 6, 2023.
Methods
This cross-sectional interview-based study was conducted with 340 older adults who experienced the earthquakes on February 6, 2023, and visited outpatient departments in Gaziantep. Data were gathered using a demographic form, Modified Fried Frailty Index, and WHO Quality of Life Instrument for Older Adults.
Results
Participants’ average age was 71.37 ± 6.56 years, and 56.6% were women. Among them, 20.9% lost a first-degree relative, 15.3% were injured, and 45.3% were displaced. WHOQOL-OLD scores differed significantly by age, marital status, education, chronic illness, polypharmacy, living arrangements, and frailty.
Conclusions
This study highlights the factors influencing the quality of life of older adults in Türkiye after an earthquake. Living with a spouse and having primary or secondary education improved quality of life, while chronic illnesses and displacement had negative impacts. These findings emphasize the importance of considering the specific needs of older adults in disaster preparedness and response.
For patients with primary malignant brain tumors, cognitive decline is incredibly common and contributes to reduced independence in daily functioning. These patients often rely on informal caregivers (e.g., family, friends) for functional support, shown to increase caregiver distress in other neurologic populations. However, few studies have investigated this relationship in neuro-oncology; thus, we explored whether neuro-oncology patients’ neurocognitive function was associated with caregiver burden.
Method:
Neuro-oncology patients completed neuropsychological tests assessing commonly affected cognitive domains, and caregivers completed a validated measure of caregiver burden including impact on daily schedule, self-esteem, and availability of family support. Dyads were selected from a previous randomized-controlled trial (SmartCare) for distressed neuro-oncology caregivers. Independent samples t-tests and hierarchical regressions were used to evaluate the relationship between patients’ neurocognitive performance and caregiver burden.
Results:
Seventy-eight neuro-oncology dyads were included for analyses (Patients: Mage = 53.4, 65.4% male, Caregivers: Mage = 52.5, 71.8% female, 84.6% spouse). Caregiver schedule burden, but not self-esteem or family support, was significantly higher for caregivers of patients with deficits in verbal memory and divided attention (p < .05). After controlling for disease-specific characteristics and motor dexterity, only patient verbal memory performance remained a significant predictor of caregiver burden (p < .05). Inhibition and verbal fluency were not related to caregiver burden domains (ps > .05).
Conclusions:
Patients’ verbal memory performance appears to be indicative of cognitive changes that contribute to increased caregiver demands on their daily schedule and time burden. Maximizing patients’ functioning through leveraging their continued cognitive strengths and implementing individualized cognitive rehabilitation programs may improve caregiver burden.
This study examines changes in supportive care needs, quality of life and social support among laryngeal cancer patients following total laryngectomy.
Methods
Ninety-nine patients were assessed pre-operatively (T0), one (T1), three (T2) and six months (T3) post-total laryngectomy using SCNS-SF34, FACT-H&N and PSSS. Statistical analysis included repeated-measures analysis of variance and paired t-tests.
Results
Unmet needs increased significantly over time in physical/daily (46.46 per cent →86.87 per cent), psychological (60.61 per cent →93.94 per cent), patient care (83.84 per cent →97.98 per cent) and health system domains (85.86 per cent →96.97 per cent), while sexual needs remained low. SCNS-SF34 scores rose (113.03→145.25; p < 0.001), FACT-H&N declined (97.17→75.19; p < 0.001) and PSSS decreased (55.48→41.99; p < 0.001), with family support most affected. All scales showed significant timepoint differences (p < 0.05). Notably, none of the patients underwent voice function restoration surgery during the study follow-up period, which may have amplified voice-related impacts on these outcomes.
Conclusion
Following total laryngectomy, laryngeal cancer patients experience escalating supportive care needs, alongside significant declines in quality of life and social support—with family support particularly affected by caregiving burdens.
Fear of cancer recurrence (FCR), defined as worry about cancer progression or return, is a common concern among patients and survivors. This study aims to identify factors influencing the onset of FCR and to evaluate its impact on emotional distress and quality of life (QoL) in patients undergoing systemic cancer treatment.
Methods
A sample of 175 patients undergoing systemic cancer treatment completed self-report questionnaires assessing socio-demographics, clinical factors and fear of cancer recurrence, anxiety, depression and QoL (FCRI, HADS, EORTC-QLQ-C30).
Results
Data analysis using linear and generalized linear models revealed that FCR is inversely associated with QoL and positively correlated with anxiety and depression. These associations were independent of socio-demographic and clinical variables, with anxiety and depression fully mediating the FCR-QoL relationship. Gender and time since diagnosis emerged as significant predictors, with an increase in FCR at 12 months post-diagnosis.
Significance of the results
Our results indicate that FCR, anxiety and depression linked, are present after several months post-diagnosis, suggesting that FCR tends to intensify over time. These findings carry important psychological implications, highlighting the need to support patients in recognizing and managing their fear and emotional distress. Implementing a psychoeducational counseling approximately six months after diagnosis – engaging oncologists, psycho-oncologists, and patients within a “stepped-care” framework – may be effective in mitigating FCR and its emotional consequences.
This study’s primary objective was to test the feasibility of using the online personal utility function (OPUF) approach and develop a preliminary utility tariff for the EQ-5D-5L based on a South African community sample.
Methods
The need for an ethnically and socioeconomically diverse sample was seen as essential. This led to the need for interviewer assistance during completion of the survey instrument and translation of the instrument into multiple languages. English, Zulu, Tswana, and Afrikaans were chosen to allow the vast majority of a community sample people to participate. A sample size of sixty respondents was based on a previous OPUF pilot valuation study for the EQ-5D-5L, and a pilot study of twenty respondents was undertaken using the English language version of OPUF.
Results
There were sixty-one respondents in the main study with most respondent characteristics being well matched with national figures, except for language. Personal utility functions could be calculated for sixty respondents, with the mean tariff showing monotonically declining utility decrements within each dimension. An examination of individual functions showed two contrasting sets of preferences that were driven by the respondents’ rating of death. A separate subgroup analysis also showed preference heterogeneity based on the home language of the respondents.
Conclusions
Our study showed that the application of the OPUF approach is possible in a socioeconomically diverse population in South Africa. The examination of individual personal utility functions shows marked heterogeneity of preferences that needs to be explored further so that the source of this can be established.
The 9-item Body Image Life Disengagement Questionnaire (BILD-Q; Atkinson & Diedrichs, 2021) assesses behavioral avoidance of important life activities due to body image and appearance concerns. Encompassing life domains beyond physical and mental health (e.g., participation in education and sport, socializing, seeking healthcare, self-assertion), the BILD-Q contributes to understanding the broader consequences of negative body image on individual development and future contribution to society. The BILD-Q can be administered online or in-person to adolescents and adults and is free to use. Women and men complete the same 28 items. This chapter first discusses the development of the BILD-Q and then provides evidence of its psychometrics. Exploratory and confirmatory factor analyses have shown the BILD-Q to have a unidimensional factor structure. Its gender invariance has been upheld among early adolescents. Internal consistency reliability, test-retest reliability, convergent validity, and incremental validity support the use of the BILD-Q. This chapter provides the BILD-Q items in their entirety, instructions for administration and scoring, and the item response scale. Links to available translations are included. Logistics of use, such as permissions, copyright, and citation information, are also provided for readers.
The 12-item Perceived Benefits of Thinness Scale (PBTS; Flatt et al., 2022)] assesses an individual’s beliefs about how being thinner would positively influence aspects of their life including their self-esteem, satisfaction, mood, relationships, and professional success. The PBTS can be administered online and/or in-person to adults and is free to use in any setting. This chapter first discusses the development of the PBTS and then provides evidence of its psychometrics. More specifically, the PBTS has been found to have a single-factor structure within exploratory and confirmatory factor analyses. Internal consistency reliability, test-retest reliability, convergent validity, discriminant validity, and incremental validity support the use of the PBTS. Next, this chapter provides the PBTS items in their entirety, instructions for administration to participants, the item response scale, and the scoring procedure. Logistics of use, such as permissions, copyright, and contact information, are provided for readers.
The 19-item Body Image Quality of Life Inventory (BIQLI; Cash & Fleming, 2002) assesses the influence of body image in specific life contexts---that is, the degree and nature to which a person’s body image impacts many important life domains (e.g., enjoyment of sex, work, school, physical exercise activities). The original BIQLI has been updated to ensure gender neutrality within its items, and a shorter 10-item form is available (Hazzard et al., 2022). The BIQLI can be administered online or in-person to adolescents or adults; it is free to use. This chapter first discusses the development of the BIQLI and then provides evidence of its psychometrics. More specifically, the BIQLI has been found to have a unidimensional factor structure that is invariant across age and gender. Internal consistency reliability, test-retest reliability, and construct validity support the use of the BIQLI. Next, this chapter provides all items, instructions for administering the BIQLI to participants, its response scale, and scoring procedures. Links to known translations are included. Logistics of use, such as how to obtain the scale, permissions, copyright, and contact information are available for readers.
This study was conducted to examine the relationship between cancer patients’ spiritual needs and their quality of life and depression levels.
Methods
This cross-sectional, exploratory study was conducted between March 2023 and November 2024. The study population consisted of cancer patients hospitalized in medical oncology departments at a university hospital in eastern Turkey. The sample consisted of 250 patients, determined by power analysis. To collect data, the “Demographic Information Form,” “Spiritual Needs Assessment Scale,” “EORTC QLQ-C30 Version 3.0 Quality of Life Scale,” and “Beck Depression Scale” were used to evaluate the patients’ sociodemographic characteristics and disease process.
Results
There was a weak, negative, statistically significant relationship between patients’ spiritual needs and the subdimensions of the quality of life scale, specifically the general perceived health status (r = −0.297, p < 0.001), physical (r = −0.446, p < 0.001), role (r = −0.423, p < 0.001), emotional (r = −0.472, p < 0.001), cognitive (r = −0.458, p < 0.001) and social (r = −0.443, p < 0.001) functions, and finally, a weak positive correlation was found between the symptoms experienced (r = 0.376, p < 0.001) and depression levels. Additionally, a weak positive correlation between spiritual needs and depression level (r = 0.374, p < 0.001) was identified. Functional areas, depression, education level, diagnosis duration, and symptoms were identified as variables predicting spiritual needs.
Significance of results
In conclusion, it was determined that as the spiritual needs of cancer patients increased, their quality of life decreased and the severity of depression increased.
Recently, functional foods have been considered as an effective approach in management of type 2 diabetes mellitus. This trial aimed to evaluate the potential benefits of date seed powder (DSP) on inflammation anxiety- and depression-like behaviours, sleep quality and tryptophan (TRP)–kynurenine (KYN) metabolism in type 2 diabetes mellitus patients. In this trial, forty-three patients with type 2 diabetes were randomised to two groups: either 5 g/d of the DSP or placebo for 8 weeks. Depression, anxiety and stress scale, sleep quality, quality of life (QoL), levels of fasting blood glucose, endotoxin, anti-inflammatory/pro-inflammatory biomarkers, hypothalamus–pituitary–adrenal (HPA) axis-associated biomarkers (including brain-derived neurotrophic factor (BDNF)), KYN, TRP, cortisol and adrenocorticotropic hormone (ACTH) were assessed at baseline and after 8 weeks. An independent t test was used for baseline comparisons, while ANCOVA was used for post-intervention between-group comparisons. The results showed that supplementation with DSP significantly improved depression, anxiety and stress scale, sleep quality and QoL in comparison with placebo. In terms of biochemical parameters, the intervention group exhibited significantly reduced levels of endotoxin, and cortisol, KYN, KYN:TRP ratio as well as significantly elevated levels of IL-10, TRP concentrations and IL-10:IL-18 ratio compared to the placebo group. Changes in fasting sugar, C-reactive protein (hs-CRP), IL-18, ACTH, BDNF concentrations and cortisol:ACTH ratio were not different between groups. Supplementing with date seed may effectively improve anxiety- and depression-like behaviours, sleep quality and QoL by modulating metabolic endotoxemia, inflammation and HPA axis activity in patients with type 2 diabetes.
It has long been challenging to assess local residents’ quality of life, which is affected by numerous natural and man-made amenities. We develop a novel compensating differential model of quality-of-life rankings applicable to developing countries by introducing farm income into the household budget alongside housing and labour market differentials. We apply this model to Indonesia using detailed household data from the Indonesian Family Life Survey for two different time periods and combining estimates of agricultural, off-farm labour and housing market differentials. We find heterogeneous amenity impacts across the agricultural and off-farm labour sectors. We use our model to show how significant changes in rankings across time are consistent with contemporaneous internal migration patterns in Indonesia. These rankings yield important information for policymakers on expected changes in migration and can be used to help inform public investment.
Medical advances have extended the lives of adults with CHD, but transitioning to adult healthcare remains challenging. Identifying factors related to lapses in care is crucial for adult females due to their unique healthcare needs.
Objective:
We examined the relationships among length of lapses in primary care and cardiology services with quality of life and perceived health status for adult females with CHD.
Methods:
A convergent mixed-methods design was used to examine thirty adult females with CHD, aged 21–30. Descriptive statistics and correlational analysis were used to examine perceived health status and quality of life based on lapse of care durations. Thematic analysis was used for qualitative data.
Results:
A 12-month or greater lapse in care occurred in 46.7% of participants for cardiology and 60% for primary care, and 30.0% lacked an established adult primary care provider. Participants cited healthcare system barriers, provider shortages, and difficult transitions from paediatric providers as contributing factors to lapses in care. Despite lapses, most participants reported similar or better physical health scores than the general population. However, those with either no or prolonged lapse in cardiology care had lower mental health scores. Participants with primary care lapses greater than 6 months reported better quality-of-life scores than those with uninterrupted care.
Conclusion:
Significant gaps, which contribute to lapses of care, persist in transition care for females with CHD. Findings highlight the need for structured transition planning, improved primary care access, and an integrated primary-specialty care model to improve transition.
This study aimed to translate, culturally adapt, and validate the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire for Colorectal Cancer for Serbian patients.
Methods
The prospective cohort study was conducted at the Clinic for Digestive Surgery, University Clinical Center of Serbia, and included 150 Serbian-speaking colorectal adenocarcinoma patients undergoing colorectal surgery. The translation process involved rigorous forward and backward translations, pilot testing with patients, and statistical analysis for psychometric validation, including internal consistency, reliability, convergent and discriminant validity, concurrent validity, and known-groups validity.
Results
Results showed good internal consistency across most scales (Cronbach’s alpha values ranging from 0.769 to 0.855), with excellent split-half reliability (0.872). Convergent and discriminant validity analyses confirmed the questionnaire’s capacity to measure constructs it was theoretically related. The significant correlations were observed between corresponding scales and items of EORTC QLQ-C30 and EORTC QLQ-CR29 questionnaires. Known-groups analysis demonstrated the tool’s ability to distinguish between patient groups based on tumor location, stoma presence, and neoadjuvant therapy.
Significance of results
The Serbian version of the EORTC QLQ-CR29 is a reliable and valid instrument for assessing the quality of life in Serbian colorectal cancer patients, reflecting its potential for widespread clinical application.
There is growing evidence that optimising dietary quality and engaging in physical activity (PA) can reduce dementia and cognitive decline risk and improve psychosocial health and quality of life (QoL). Multimodal interventions focusing on diet and PA are recognised as significant strategies to tackle these behavioural risk factors; however, the cost-effectiveness of such interventions is seldom reported. A limited cost consequence based on a 12-month cluster-randomised Mediterranean diet (MedDiet) and walking controlled trial (MedWalk) was undertaken. In addition, QoL data were analysed. Programme costs ($AUD2024) covered staff to deliver the MedWalk programme and foods to support dietary behaviour change. The primary outcome measure of this study was change in QoL utility score, measured using the Assessment of Quality of Life (AQoL-8D). Change scores were compared for the groups using general linear models while controlling for demographic factors associated with baseline group differences and attrition. Change in QoL (decreased, maintained or improved) was determined using a cross-tabulation test. MedWalk programme costs were estimated at $2695 AUD per participant and control group cost at $165 per person – a differential cost of $2530. Mean change in utility scores from baseline to 12 months was not statistically significant between groups. Nevertheless, the MedWalk group was significantly less likely to experience a reduction in their QoL (20·3 % MedWalk v. 42·6 % control group) (P = 0·020). A MedDiet and walking intervention may have a role in preventing decline in QoL of older Australians; however, longer-term follow-up would be beneficial to see if this is maintained.
The study was conducted to determine the relationship between spirituality and the quality of life among women with breast cancer.
Methods
This study utilized descriptive correlational research and a purposive sampling technique that involved women with breast cancer. Patients with breast cancer from particular breast cancer societies and organizations in Manila made up the sample. A total of 123 participants were included in the study. The Spiritual Index of Well-Being (SIWB) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire were used to collect the needed data. Descriptive and inferential statistics were used to determine the relationship between spirituality and quality of life among women with breast cancer.
Results
A high level of spirituality and quality of life were found among the participants. Overall, the mean score of the SIWB among the participants was 4.48 (±0.670), while the quality of life score was 62.6 (±10.9). A significant negative correlation was found between spirituality and quality of life (r = -0.127, p = 0.031), while significant positive correlations were noted between quality of life and self-efficacy (r = 0.683, p < 0.001) and life schemes or meaning in life (r = 0.704, p < 0.001).
Significance of results
Although spirituality and quality of life had a negative correlation, the subscales of self-efficacy and life scheme had high positive correlations, indicating the complex dimensions of spirituality. In addition to providing coping strategies, spirituality offers patients the emotional, social, and existential support they need to deal with the unknowns of illness.