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This article presents a framework to assist with the making of often challenging decisions about engagement and disengagement with patients across mental health services. The framework is based on Beauchamp & Childress’s four principles of clinical ethics. We pose practical questions, illustrated by a clinical vignette, around these four principles in order to aid implementation of ethics-based decision-making. The framework is useful in both complex and seemingly straightforward issues. It can be used as a means of communicating what are often controversial decisions to fellow clinicians and patients.
‘Living well’ is an important concept across national dementia strategies. Qualitative research has contributed to understanding of living well for people with dementia. Longitudinal qualitative approaches, though fewer, can explore potential changes in accounts of living well, psychological coping and adapting to dementia, and if/how people with dementia maintain continuity in their lives. This longitudinal qualitative study aims to gauge what is important for ‘living well’ with mild-to-moderate dementia and whether this changes over time in a group of older people with mild-to-moderate dementia living at home. Semi-structured, qualitative interviews with 20 people with dementia from the IDEAL cohort study were conducted in 2017 and again one year later then thematically analysed. The overarching narrative was largely that of continuity and adaptation, with incremental not disruptive change. Continuing participation and meaningful occupation were important to maintaining living well over time; individuals pursued new as well as previous interests. As a key psychological coping strategy to support continuity in their lives, individuals emphasised their capabilities to maintain activities in spite of dementia, compartmentalising areas that had become more challenging. Maintaining social networks and accommodating changes in social relationships were also central to living well, including managing the psychological impacts of changes in spousal relationships. People in the earlier stages of dementia emphasise continuity and their capabilities, reporting change over time only in certain aspects of their lives. However, small, incremental changes in their social relationships and opportunities for meaningful occupation may still afford key areas for supporting capability to ‘live well’.
People with dementia (PwD) and their carers often consider maintaining good quality of life (QoL) more important than improvements in cognition or other symptoms of dementia. There is a clinical need for identifying interventions that can improve QoL of PwD. There are currently no evidence-based guidelines to help clinicians, patients and policy makers to make informed decisions regarding QoL in dementia.
Aims
To conduct the first comprehensive systematic review of all studies that investigated efficacy of any pharmacological or non-pharmacological intervention for improving QoL of PwD.
Method
Our review team identified eligible studies by comprehensively searching nine databases. We completed quality assessment, extracted relevant data and performed GRADE assessment of eligible studies. We conducted meta-analyses when three or more studies investigated an intervention for improving QoL of PwD.
Results
We screened 14 389 abstracts and included 324 eligible studies. Our meta-analysis confirmed level 1 evidence supporting the use of group cognitive stimulation therapy for improving QoL (standardised mean difference 0.25; P = 0.003) of PwD. Our narrative data synthesis revealed level 2 evidence supporting 42 non-pharmacological interventions, including those based on cognitive rehabilitation, reminiscence, occupational therapy, robots, exercise or music therapy. Current evidence supporting the use of any pharmacological intervention for improving QoL in dementia is limited.
Conclusions
Current evidence highlights the importance of non-pharmacological interventions and multidisciplinary care for supporting QoL of PwD. QoL should be prioritised when agreeing care plans. Further research focusing on QoL outcomes and investigating combined pharmacological and non-pharmacological interventions is urgently needed.
Schizophrenia is a chronic condition that requires long-term management. Quality of life is an important outcome measure for individuals diagnosed with schizophrenia; it can be tracked over time allowing evaluation of whether interventions lead to sustainable improvements. Nutrition and dietary interventions are an underutilized treatment for tackling the metabolic consequences of mental illness, which is now recognized as having increased importance in the management of schizophrenia. This study examines the impact of nutrition and dietary interventions on quality of life outcomes for those with schizophrenia.
Methods:
A systematic review of the literature was conducted, assessing the impact of nutritional interventions on quality of life outcomes in individuals with a diagnosis of schizophrenia.
Results:
A total of 982 articles were screened, of which nine articles met the inclusion criteria. Quality of life measures varied across studies, which made comparison across studies challenging. Previous studies had relatively small sample sizes and did not have long follow-up durations. Some of the studies found that dietary interventions such as counselling, weight management programs, food diaries and nutritional education improved quality of life, whereas others did not detect any effect.
Conclusions:
The review provides preliminary evidence that nutrition and dietary interventions may benefit quality of life among individuals with schizophrenia. There were however substantial limitations in studies highlighting the need for further research. The paper also highlights the need to standardize assessment tools for future quality-of-life research.
The purpose of this study was to analyze the impact of COVID-19 on the quality of life of individuals who received psychological treatment compared to those who did not.
Methods
The survey method was used to collect data. The questionnaire consisted of questions that elicit the personal characteristics of the participants and the COVID-19–Impact on Quality of Life Scale (COV19-QoL). A total of 480 individuals aged 18 years or older were administered the questionnaires in Türkiye. The data obtained from the survey was analyzed using the SPSS 26 software package.
Results
The results showed that the effect of COVID-19 on quality of life differed significantly depending on whether the participants received psychological treatment or not.
Conclusions
It was concluded that individuals who received psychological treatment had a higher impact of COVID-19 on their quality of life. The findings are discussed concerning the relevant literature on theoretical and practical implications.
We use healthcare in an effort to live longer or feel better. Yet many evaluations do not consider these outcomes, which are of high importance to patients. Instead, they concentrate on variables that are considered surrogates for what treatment is attempting to achieve. Prevention of heart disease, for example, might be estimated from changes in LDL cholesterol levels. These surrogate markers are often poorly correlated with the outcomes of most importance to patients. Understanding the basic biological mechanisms is valuable, but sometimes irrelevant. The chapter reviews patient-reported outcomes that are becoming more commonly used to evaluate health care. These measures are used to create indexes that combine how long people live with the quality of life during the years that precede death. The measures are generic and can be used to compare the value of investing in interventions that have different specific objectives. Cost-effectiveness analysis can directly compare health gain associated with treatments as different as exercise training versus organ transplantation. The public policy implications associated with these metrics are discussed.
Gastroesophageal reflux disease is a common condition that can be controlled with proton pump inhibitors such as omeprazole. We examine randomized controlled trials (RCTs) of omeprazole and find stronger evidence of efficacy among RCTs with industry support than without. The participants in these trials were unlike most people who take proton pump inhibitors, raising questions about the external validity of RCTs. Furthermore, use of these medicines is associated with short- and longer-term adverse effects. Healthy behavior change, such as weight loss, holds promise as an alternative to proton pump inhibitors.
Cervical cancer remains a significant public health concern in sub-Saharan Africa, with treatment modalities such as chemoradiotherapy impacting patients’ quality of life (QoL). This study assessed the QoL of cervical cancer patients undergoing definitive chemoradiotherapy.
Methods:
This cross-sectional study was conducted at the National Radiotherapy, Oncology and Nuclear Medicine Centre, Korle-Bu Teaching Hospital, Accra, between February and May 2023. A total of 120 adult female cervical cancer patients, treated with definitive chemoradiotherapy, were purposively recruited. Data were collected using the FACT-Cx questionnaire, which assessed physical, social, emotional and functional well-being as well as additional concerns. Statistical analysis included descriptive and inferential methods with Spearman Rho used to examine correlations.
Results:
The mean age of participants was 53·5 years (SD 15·6), with most (77%) employed and half (50%) married. QoL scores were highest in social well-being (mean = 17·3/24·0) and emotional well-being (mean = 16·8/24·0), but lower in physical (mean = 15·4/28·0) and functional well-being (mean = 12·3/24·0). Most participants (66·7%) reported a good QoL, while 6·7% reported poor QoL. Key challenges included fatigue, pain and dissatisfaction with sex life, although participants received strong emotional support from their families. Correlations between age and QoL domains were statistically insignificant (p > 0·05).
Conclusions:
The findings suggest that despite the physical and functional challenges faced during chemoradiotherapy, most participants reported good overall QoL, largely attributed to strong family and social support. Future studies should incorporate longitudinal designs with baseline data collection to better understand treatment-related changes in QoL.
Limited access to multiple sclerosis (MS)-focused care in rural areas can decrease the quality of life in individuals living with MS while influencing both physical and mental health.
Methods:
The objectives of this research were to compare demographic and clinical outcomes in participants with MS who reside within urban, semi-urban and rural settings within Newfoundland and Labrador. All participants were assessed by an MS neurologist, and data collection included participants’ clinical history, date of diagnosis, disease-modifying therapy (DMT) use, measures of disability, fatigue, pain, heat sensitivity, depression, anxiety and disease activity.
Results:
Overall, no demographic differences were observed between rural and urban areas. Furthermore, the categorization of primary residence did not demonstrate any differences in physical disability or indicators of disease activity. A significantly higher percentage of participants were prescribed platform or high-efficacy DMTs in semi-urban areas; a higher percentage of participants in urban and rural areas were prescribed moderate-efficacy DMTs. Compared to depression, anxiety was more prevalent within the entire cohort. Comparable levels of anxiety were measured across all areas, yet individuals in rural settings experienced greater levels of depression. Individuals living with MS in either an urban or rural setting demonstrated clinical similarities, which were relatively equally managed by DMTs.
Conclusion:
Despite greater levels of depression in rural areas, the results of this study highlight that an overall comparable level and continuity of care is provided to individuals living with MS within rural and urban Newfoundland and Labrador.
Chronic headache after aneurysmal subarachnoid hemorrhage (aSAH) remains an ongoing area of investigation, with uncertainty regarding its prevalence and long-term outcomes.
Methods:
A systematic review was conducted across five databases – Medline (Ovid), the Cochrane Central Register of Controlled Trials (Ovid), PsychInfo (Ovid), Embase (Ovid) and Scopus (Elsevier) – to identify all studies investigating the prevalence of chronic headaches after aSAH. A total of five studies were identified and included in our review.
Results:
There were five observational studies (three cohort and two cross-sectional). The overall prevalence of chronic headaches after aSAH ranged from 16.1% to 41%, albeit across a follow-up time frame of 12 months to 7.5 years. Outcome measurements included quantitative pain scores and opioid usage; however, these were inconsistent across studies, and the studies did not address the long-term impacts of chronic headaches on quality of life or their psychosocial implications.
Conclusion:
The prevalence of chronic headache after aSAH is not well-characterized, and long-term outcomes are seldom studied, highlighting a critical gap in the current literature. Longitudinal cohort studies with standardized approaches to ascertain the psychosocial and physiological burden associated with post-aSAH chronic headaches are urgently needed.
Objectives: Severe forms of acute and chronic graft-versus-host disease (GvHD) are life-threatening complications after adjusted to allogeneic hematopoietic bone marrow or peripheral blood stem cell transplantation (allo-HSCT) and are a major cause of non-relapse mortality. Little is known about the burden, needs, and resources of this specific patient group. This qualitative interview study aimed to explore the experiences of patients with severe forms of GvHD and their perception of palliative care (PC).
Methods: Semi-structured interviews were conducted among 13 participants at a tertiary university hospital and were evaluated by qualitative content analysis.
Results: The participants described a high psychological and physical symptomatic burden resulting in severely impaired physical function up to loss of independence, which all substantially limited their quality of life (QoL). Frequent long-term hospitalizations highly impacted their social life including the ability to work. A desire to die was frequently experienced, particularly when participants suffered from peaks of burden and uncertainty about the future. Dying was either feared or perceived as relief. Not all participants received PC and the term was sometimes associated with fear or remained unclear to them.
Significance of results: Patients with severe forms of GvHD described a multifactorial, high overall burden, and permanently impaired QoL, which needs special support. Next to depressive symptoms, the frequently reported desire to die has not yet been thoroughly studied and requires further research. The infrequent use of PC in this context implicates a need for structural improvement and education in the German healthcare system.
Partial remission after major depressive disorder (MDD) is common and a robust predictor of relapse. However, it remains unclear to which extent preventive psychological interventions reduce depressive symptomatology and relapse risk after partial remission. We aimed to identify variables predicting relapse and to determine whether, and for whom, psychological interventions are effective in preventing relapse, reducing (residual) depressive symptoms, and increasing quality of life among individuals in partial remission. This preregistered (CRD42023463468) systematic review and individual participant data meta-analysis (IPD-MA) pooled data from 16 randomized controlled trials (n = 705 partial remitters) comparing psychological interventions to control conditions, using 1- and 2-stage IPD-MA. Among partial remitters, baseline clinician-rated depressive symptoms (p = .005) and prior episodes (p = .012) predicted relapse. Psychological interventions were associated with reduced relapse risk over 12 months (hazard ratio [HR] = 0.60, 95% confidence interval [CI] 0.43–0.84), and significantly lowered posttreatment depressive symptoms (Hedges’ g = 0.29, 95% CI 0.04–0.54), with sustained effects at 60 weeks (Hedges’ g = 0.33, 95% CI 0.06–0.59), compared to nonpsychological interventions. However, interventions did not significantly improve quality of life at 60 weeks (Hedges’ g = 0.26, 95% CI -0.06 to 0.58). No moderators of relapse prevention efficacy were found. Men, older individuals, and those with higher baseline symptom severity experienced greater reductions in symptomatology at 60 weeks. Psychological interventions for individuals with partially remitted depression reduce relapse risk and residual symptomatology, with efficacy generalizing across patient characteristics and treatment types. This suggests that psychological interventions are a recommended treatment option for this patient population.
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.
Methods
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.
Results
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.
Significance of results
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.
Materials and Methods:
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.
Results:
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).
Conclusion:
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.
Methods
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.
Results
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.
Significance of results
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.
Methods
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).
Results
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.
Significance of results
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.
Conclusion
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.
Methods
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.
Results
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.
Significance of results
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).
Methods:
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).
Results:
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.
Conclusion:
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.
Methods
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.
Results
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.
Conclusions
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.
Methods
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).
Results
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.
Conclusions
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.