Aim: The aim of our research was to explore the unfulfilled needs of patients with a progressive neurological disease in advanced stage of the illness within the current system of health and social care in the Czech Republic.
Design and Setting: Qualitative research (grounded theory) was used to conceptualize the patterns of unmet palliative care needs in Czech Republic.
Methods: The data collection method comprised individual, in-depth interviews (n = 19) and focus groups (n = 4) where a total of 52 respondents participated (patients with progressive neurological diseases [PNDs], family members, and professionals).
Results: Two main categories of unfulfilled needs were determined (life with the disease, professional help), and they were described in the context of the 3 crucial themes identified in the study—the symptoms of the advanced stage of the disease resulted in substantial reduction of physical self-sufficiency, loss of autonomy, and social isolation; the level of dependence on the support and help of others increased; the patients also highlighted several problems related to health-care services.
Conclusion: The unmet needs should be taken into consideration when creating the concept of the neuropalliative and rehabilitation care, including the mental health support plan, because of the emotional, behavioral, and cognitive disorders that frequently occur in the lives of a substantial amount of patients with PND.
BACKGROUND: The goals of palliative care are to relieve suffering and promote quality of life. Palliative care for older persons has been less prioritised than palliative care for younger people with cancer, which may lead to unnecessary suffering and decreased quality of life at the final stage of life.
AIM: To evaluate whether a palliative care intervention had any influence on the perceived quality of life of older persons (=65 years).
METHODS: This study was conducted as a complex intervention performed with an experimental crossover design. The intervention was implemented in 20 nursing homes, with a six-month intervention period in each nursing home. Twenty-three older persons (=65 years) in the intervention group and 29 in the control group were interviewed using the WHOQOL-BREF and WHOQOL-OLD questionnaires at both baseline and follow-up. The collected data were analysed using the Wilcoxon signed-rank test to compare paired data between baseline and follow-up.
RESULTS: In the intervention group, no statistically significant increases in quality of life were found. This result contrasted with the control group, which revealed statistically significant declines in quality of life at both the dimension and item levels. Accordingly, this study showed a trend of decreased health after nine months in both the intervention and control groups.
CONCLUSION: It is reasonable to believe that quality of life decreases with age as part of the natural course of the ageing process. However, it seems that the palliative care approach of the intervention prevented unnecessary quality of life decline by supporting sensory abilities, autonomy and social participation among older persons in nursing homes. From the ageing perspective, it may not be realistic to strive for an increased quality of life in older people living in nursing homes; maybe the goal should be to delay or prevent reduced quality of life. Based on this perspective, the intervention prevented decline in quality of life in nursing home residents.
IMPLICATIONS FOR PRACTICE: The high number of deaths shows the importance to identify palliative care needs in older persons at an early stage to prevent or delay deterioration of quality of life.
Palliative and hospice care remain underused for patients with heart failure. In the next phase of serious-illness care, care delivery innovations can help providers integrate approaches to improving functioning and quality of life into the care of such patients.
In many countries, it has been publicly debated whether health gains for patients at end-of-life (EoL) should be valued higher than health gains for other patients. This has led to a range of stated preference studies examining the justification for an EoL premium on the basis of public preferences - so far with mixed findings. In the present study, we seek to extend this literature. We apply a simple stated preference approach with illustrative binary choices to elicit both individual and social preferences for several types of health gains. More specifically, we investigate whether health gains at EoL, resulting from either an improvement in quality of life (QoL) or life expectancy (LE) are valued differently from similarly sized health gains from preventive treatment and treatment of a temporary disease. Furthermore, we examine whether social preferences are affected by the age of beneficiaries. A web-based survey was conducted in 2015 using a random sample of 1047 members of the general public in Denmark. Overall, we do not find evidence to support an EoL premium compared to other health gains, neither when preferences are elicited from a social nor an individual perspective. Furthermore, our results demonstrate that the type of the health gain received matters to preferences for treatment at EoL with more weight given to gains in QoL than gains in LE. Finally, we find heterogeneity in preferences according to respondent characteristics, perspectives and age of beneficiaries.
Background: The absence of curative medication for amyotrophic lateral sclerosis (ALS) makes palliative care and understanding quality of life (QoL) in ALS a clinical priority. Previous qualitative research has explored the concept of QoL in terms of illness impact on life perspectives and sense of self.
Objective: In this research, we explored 'concerns' - one of the four aspects in the World Health Organisation's conceptualisation of QoL - towards adding to the literature.
Methods: In-depth interviews with 26 individuals with ALS were subjected to thematic analysis involving both inductive and deductive approaches to explore participant's concerns, and to evaluate the relevance of their concerns for understanding QoL in ALS.
Findings: The analysis showed that concerns for significant others contribute to participant's QoL because of their existential value. It was important for participants to minimise the impact of limitations and burdens associated with ALS on significant others, even at a cost to self.
Discussion: The current study supports a holistic approach in service provision, ensuring the inclusion of relevant significant others. It is further suggested that clinicians explore the specifics of burdens perceived by patients in order to support them in minimising the burdens for their significant others.
Non-invasive ventilation (NIV) has become an important cornerstone of symptomatic treatment in amyotrophic lateral sclerosis (ALS), improving survival and quality of life. In this review, we summarize the most important recent developments and insights, including evidence of efficacy, indication criteria and time of initiation, ventilation parameters and adaptation strategies, treatment of complicating factors, transition from NIV to invasive ventilation, termination of NIV and end-of-life management. Recent publications have questioned former conventions and guideline recommendations, especially with regard to timing and prognostic factors; therefore, a fresh look and re-evaluation of current evidence is needed.
CONTEXT: Palliative care interventions have shown promise in improving quality of life and reducing healthcare utilization among patients with chronic organ failure.
OBJECTIVES: To evaluate the effect of a palliative care intervention for adults with end stage liver disease (ESLD).
METHODS: Randomized controlled trial of ESLD patients admitted to the hepatology service at a tertiary referral center whose attending hepatologist indicated they would not be surprised if the patient died in the following year on a standardized questionnaire. Control group patients received usual care. Intervention group patients received inpatient specialist palliative care consultations and outpatient phone follow-up by a palliative care nurse. The primary outcome was time until first readmission. Secondary outcomes included days alive outside the hospital, referral to hospice care, death, readmissions, patient quality of life, depression, anxiety, and quality of end of life care over 6 months.
RESULTS: The trial stopped early due to difficulties accruing patients. Of 293 eligible patients, only 63 patients enrolled, 31 in the intervention group and 32 in the control group. This pace of enrollment was only 25% of what the study had planned and so it was deemed infeasible to complete. Despite stopping early, intervention group patients had a lower hazard of readmission (HR 0.36, 95% CI 0.16-0.83, p=0.017) and greater odds of having more days alive outside of the hospital than control group patients (OR 3.97, 95% CI: 1.14-13.84, p=0.030). No other statistically significant differences were observed.
CONCLUSION: Logistical obstacles hindered completion of the trial as originally designed. Nevertheless, a preemptive palliative care intervention resulted in increased time to first readmission and more days alive outside of the hospital in the first six months after study entry.
BACKGROUND: Emotional preparedness for death is a distinct but related concept to prognostic awareness (PA). Both allow patients to prepare psychologically and interpersonally for death but they have primarily been examined in cross-sectional studies.
OBJECTIVE: To (1) explore the courses of change in good emotional preparedness for death and accurate PA and (2) evaluate their associations with severe anxiety symptoms, severe depressive symptoms, and quality of life (QOL) in cancer patients' last year.
METHODS: For this prospective, longitudinal study, we consecutively recruited 277 terminally ill cancer patients. Aims 1 and 2 were examined by univariate and multivariate generalized estimating equation analyses, respectively.
RESULTS: The prevalence of good emotional preparedness for death was 54.43%–65.85% in the last year, with a significant decrease only 91–180 vs. 181–365 days before death (odds ratio [95% CI] = 0.67 [0.47, 0.97]). Good emotional preparedness for death was associated with a lower likelihood of severe anxiety symptoms (adjusted odds ratio [95% CI] = 0.47 [0.27, 0.79]) and severe depressive symptoms (0.61 [0.39, 0.95]), but not with quality of life (ß [95% CI] = 0.49 [-2.13, 3.11]). However, accurate PA improved substantially (55.12%–70.73%) as death approached and accurate PA was positively associated with severe depressive symptoms (2.63 [1.63, 4.25]).
CONCLUSIONS: Good emotional preparedness for death and accurate PA remained largely stable and improved substantially, respectively, in cancer patients' last year. Both measures were significantly associated with psychological distress. Healthcare professionals should not only cultivate accurate PA but also promote cancer patients' emotional preparedness for death, which may improve their psychological well-being.
BACKGROUND: People with metastatic cancers experience poor quality of life (QoL), fatigue, and decreased physical function. Exercise improves these symptoms in the curative setting, but the efficacy and safety of exercise in the metastatic setting is uncertain.
METHODS: Prospective, randomized trials of moderate/high intensity aerobic exercise or resistance training versus control in patients with advanced / metastatic solid cancers were identified from prior reviews and updated using a search of PubMed. The mean and standard deviation (SD) for validated outcome measures (QoL, physical function, and fatigue) were extracted for intervention and control groups at baseline and post-intervention. The Mann Whitney test was used to evaluate the effect of exercise on the pooled change between baseline and post-intervention. Safety was evaluated qualitatively.
RESULTS: Sixteen trials were analysed. Among patients with scores at the mean or 2SD above, exercise was not associated with significant or clinical difference in QoL or fatigue. In patients with baseline scores 2SD below mean, exercise was associated with non-significant difference meeting minimal clinical important difference in QoL (-2.8 vs 4.6, p=0.28). For function, patients at the mean had non-statistically significant, but clinically meaningful improvement in the 6-minute walk test (6-MWT) (14.7 vs 29.0 meters, p=0.44). In patients 2 SD below the mean, there was a clinically meaningful difference in two patient-reported functional subscales (0.1 vs 5.3, p=0.076 and 0.44 vs 8.5, p=0.465) and a clinically meaningful difference in the 6-MWT (-7.5 vs 27.0 meters, p=0.34), although none of these associations met statistical significance. There were no differences in falls, fractures, or pain.
DISCUSSION: Exercise is associated with clinically meaningful improvements in QoL, function, and 6-MWT in some patients with metastatic cancer. Despite poor reporting of safety, there was no signal of increased harm from exercise in this setting.
INTRODUCTION: Quality of life (QOL) assessments allow for more complete evaluation of patients' lived experiences in relation to chronic conditions, such as Parkinson's disease (PD). In palliative care, such instruments are vital to ensure QOL issues are catalogued and addressed for patients. However, little is known regarding the psychometric properties of quality of life scales for use in palliative care for PD, specifically.
METHODS: 210 participants with parkinsonian disorders, who participated in a larger palliative intervention clinical trial, completed four quality of life scales (PDQ-39, PROMIS-29, QOL-AD, and McGill QOL) at baseline and post-intervention. Psychometric properties, including internal consistency and concurrent validity, were examined. Factor analyses were performed to evaluate relationships between scale items. Minimal clinically important differences (MCID) and responsiveness were calculated for each scale.
RESULTS: All scales demonstrated good internal consistency and concurrent validity. Factor analyses revealed few deviations from the defined subdomains of the scales. Mean absolute MCID values were estimated at 12.7, 10.9, 3.9, and 18.9 for PDQ-39, PROMIS-29, QOL-AD, and McGill QOL, respectively. The PDQ-39 and PROMIS-29 demonstrated higher responsiveness to palliative intervention, while the QOL-AD was more responsive in the control group.
CONCLUSIONS: The PDQ-39, PROMIS-29, QOL-AD, and McGill QOL are all valid for use in PD palliative care, though subdomains of the scales in this population may differ slightly from those initially defined. We recommend the use of PDQ-39 and PROMIS-29 as outcome measures in clinical trials for palliative care in PD, though the QOL-AD may be superior for tracking disease progression.
OBJECTIVES: The review aims to identify available evidence related to the effects of dignity therapy on dignity, psychological well-being, and quality of life (QoL) among patients with cancer under palliative care.
METHODS: Thirteen electronic databases were searched for published articles in English or Chinese from inception to May 2018. Methodological rigour was assessed through the Joanna Briggs Institute (JBI) checklist for randomised controlled trials and quasi-experimental studies. Sufficient data from four trials were statistically pooled with Review Manager; otherwise, a narrative summary was used.
RESULTS: Ten articles describing eight studies met the selection criteria and were included in the review. None of the studies met all JBI checklist criteria. Meta-analysis results revealed that dignity therapy significantly improved dignity-related distress in existential distress domain (mean differences [MD]: -0.26, 95% CI, -0.50 to -0.02, .03) and social support domain (MD: -0.23, 95% CI, -0.39 to -0.07, .004), but nonsignificant improved depression and anxiety. Narrative summaries indicated that dignity therapy exerted positive effects on patients' dignity, psychological well-being, and QoL.
CONCLUSIONS: Dignity therapy is a promising approach to improve psychological well-being among patients with cancer under palliative care. However, the effects of dignity therapy on dignity and QoL are inconsistent. Further extensive studies should measure the impact of dignity therapy through qualitative and quantitative approaches to establish outcomes in psychological well-being. Studies with sensitivity to the cultural context within which dignity therapy applied should be conducted to explore its effects on patients with cancer at the early stages of illness trajectory.
PURPOSE: Many patients with advanced cancer receive primary supports from informal caregivers (IC). As patient health deteriorates, IC assume increasing responsibility, often accompanied by distress. We investigated the quality of life (QOL) of IC of patients referred to a palliative radiotherapy (PRT) program.
METHODS: IC accompanying patients to a dedicated PRT clinic completed a survey based on the validated Caregiver Quality of Life Index-Cancer (CQOLC). Demographics, burden, and engagement in support services were evaluated. Summary statistics were calculated, and parameters were assessed for association with CQOLC scores by a generalized linear model.
RESULTS: Two hundred one surveys were analyzed representing 197 unique patients. The mean age was 68.3 years, with predominantly lung (25.0%) and prostate (19.3%) malignancies. 24.4% had been in hospital/long-term care within the previous 7 days. IC were 60.8% female, and 60.6% were the patient's spouse. 69.5% lived with the patient and 38.3% were additionally employed. IC spent a daily mean of 6.6 h (SD 7) assisting with instrumental (72.5%) and basic (37.5%) activities of daily living. Mean CQOLC score was 82.1/140 (SD 20). 63.8% of IC had previously accessed support service(s), most commonly home care (37.2%) and pharmacy (29.1%). 55.9% indicated interest in services not yet accessed. Multivariate analysis revealed additional employment, cohabitation, poor patient performance status, and interest in accessing more support services significantly correlated with higher IC burden.
CONCLUSIONS: Employing the CQOLC to screen IC of patients referred to a PRT program permits early identification of vulnerable IC to facilitate linkage with appropriate supports.
BACKGROUND: Enhancing quality of life takes precedence in the terminal stage of a disease, when a cure is considered impossible and all alternative methods to prevent disease progression have been exhausted. Life review, involving appreciating accomplishments and resolving conflicts, is widely considered to be an effective approach to bringing peace to terminal patients.
PURPOSE: This study was conducted to assess the effects of life review on quality of life in terminal patients.
METHODS: The Cochrane Library, PubMed, MEDLINE, CINAHL, CEPS, and ProQuest databases were searched for original studies published between 2007 and July 2018. Studies that used experimental designs to assess the effects of life review on quality of life in terminal patients, involved patients aged >18 years, and were published in English or Chinese were considered eligible for inclusion. Studies that measured quality of life in individuals other than patients as well as unpublished papers or data were excluded. The search terms used included "life review," "end of life," "terminal or terminally ill," "advanced cancer," "palliative," "hospice," and "quality of life." The quality of each included study was assessed using the Downs and Black checklist.
RESULTS: Six studies with 296 patients were included in the review. The participants in the included studies were from multiple countries. Life review was found to affect quality of life significantly (95% CI [0.147, 0.668], Z = 3.062, p < .05). The selected studies exhibited moderate heterogeneity (I = 42.407, p > .1).
CONCLUSIONS: Life review was found to affect quality of life significantly in the participants in the included studies. The feasibility and safety of applying life review interventions should be considered for terminal patients, and implementers of these interventions should be trained and qualified. Only a few studies in the literature have evaluated the effects of life review therapy in terminal patients. Further studies that use stricter selection criteria are necessary to evaluate the efficacy of the life review intervention before its adoption in clinical practice.
BACKGROUND: Seriously ill children suffer from numerous symptoms at the end of their lives, including pain, anxiety, and restricted communication. There are currently no comprehensive overviews of which health interventions have proven benefits and which have proven detrimental effects on the quality of life of children in an end-of-life context. In order to identify potential quality indicators to eventually improve care, a systematic review of available evidence is needed. The aim of the current systematic review will be to make an overview of the influence of health interventions on associated outcomes related to quality of life at the end of life in seriously ill children.
METHODS: A systematic search will be conducted in MEDLINE, Embase, CENTRAL, CINAHL, and Web of Science. We will include quantitative empirical designs looking into the influence of a health intervention on (proxies of) quality of life at the end of life in seriously ill children. Three independent authors will review titles and abstracts and screen full texts against eligibility criteria. One reviewer will carry out full data extraction and quality assessment, and a 20% random sample will be extracted and assessed by two independent reviewers. We will use the QualSyst Tool for assessment of the quality of the included studies (QualSyst Tool) for quality assessment; overall strength of the body of evidence will be assessed using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach. An overview table of health interventions will be discussed through narrative synthesis. Should sufficient homogeneous publications arise, we will perform meta-analyses with a random-effects model. Our protocol adheres to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) checklist for study protocols.
DISCUSSION: As part of a larger project, we will use the results of this review to identify a first set of quality indicators for the care for children at the end of life. Reviewing the current span of evidence and identifying research gaps will uncover future research priorities into the care for children at the end of life.
Objectives Bereavement is associated with negative affective, cognitive, behavioural and physiological responses. However, factors, such as coping, self-efficacy and self-esteem, can buffer negative effects of grief, and can be increased through mutual support interventions, such as shared leisure activities. This study used a non-randomised controlled design to explore the effects of group choir singing on mental health among people who have been bereaved due to cancer.
Methods A total of 58 adults bereaved in the last 5 years who had not started psychological therapy in the last 12 weeks or medication for anxiety or depression in the last month were recruited and elected to join a choir (n=29) or participate in the non-intervention control group (n=29). Joining a choir involved engaging in 90 min weekly singing and social sessions for 12 weeks with a post-intervention assessment at week 24. We used linear mixed effects models adjusted for demographics, health-related variables, musical engagement and time since bereavement to model changes over time between the two groups in symptoms of anxiety, depression, well-being, self-efficacy and self-esteem.
Results Participants who sang in a choir had more stable symptoms of depression and levels of well-being, as well as gradual improvements in their sense of self-efficacy and self-esteem over the 24 weeks. In contrast, those in the control group showed gradual increases in depressive symptoms, reductions in levels of well-being and self-esteem and no improvement in their self-efficacy. These results were independent of all covariates.
Conclusions Weekly group singing could be a promising mutual support intervention for people experiencing grief.
Pediatric cancer has experienced significant improvement in overall survival rates over the past several decades. Despite this progress, however, it remains the leading cause of death from disease beyond infancy in children. Among the children and adolescents that survive their cancer diagnosis, significant symptom burden and toxicities of therapy are often experienced. The evidence presented affords great insight in to the current empirical support for pediatric palliative care involvement, current utilization of palliative care services in the care of children with cancer and their families, and barriers that have been identified to date. Positive trends toward increased, appropriate integration of palliative care services in the care of children with cancer and their families have been observed. Continued research, advocacy, and education are necessary to optimize the care of this vulnerable population of patients and their families.
Sexuality and intimacy are poorly researched in both people living with Parkinson's and in older people. Triggers for discussion usually centre on sexual dysfunction and hypersexuality in relation to Parkinson's. However, there are many more factors that impact on physical and emotional connectedness. Despite highlighting this unmet need there are limited tools or comprehensive assessments available to help improve quality of life. Further research is required within this field, with emphasis on health professionals' education and on highlighting to patients that they have permission for this topic to be discussed and actioned.
CONTEXT: The Cancer Control Act was passed in Japan in 2007, and various additional programs on palliative care have been implemented to improve quality of life and relieve pain and suffering in patients with cancer. However, how clinical settings have changed remains unclear.
OBJECTIVES: The primary aim of the present study was to determine changes in nurses' palliative care knowledge, difficulties, and self-reported practices between 2008 and 2015.
METHODS: This study was an analysis of two nationwide observational studies from 2008 to 2015. We conducted two questionnaire surveys for representative samples of nurses in designated cancer hospitals, community hospitals, and district nurse services. The measurements used the Palliative Care Knowledge Test (PCKT, range 1-100), the Palliative Care Difficulties Scale (PCDS, range 1-5), and the Palliative Care Self-Reported Practice Scale (PCPS, range 1-5). Comparisons were made using the nonpaired Student t-test and a multivariate linear regression model using two cohorts.
RESULTS: We analyzed survey results for 2707 nurses in 2008 and 3649 nurses in 2015. Significant improvements were seen in PCKT, PCDS, and PCPS total scores for nurses in every work location over the seven-year study period, with PCKT total scores of 53 vs. 65 (P < 0.001; effect size = 0.60), 47 vs. 55 (P < 0.001; effect size = 0.40), and 52 vs. 55 (P = 0.118; effect size = 0.13), PCDS total scores of 3.0 vs. 2.5 (P < 0.001; effect size = 0.76), 3.4 vs. 2.8 (P < 0.001, effect size = 0.91), and 3.2 vs. 2.9 (P < 0.001; effect size = 0.53), and PCPS total scores of 3.7 vs. 4.0 (P < 0.001; effect size = 0.13), 3.5 vs. 3.8 (P < 0.001; effect size = 0.42), and 3.8 vs. 4.0 (P < 0.011; effect size = 0.21) in designated cancer hospitals, community hospitals, and district nurse services, respectively.
CONCLUSION: Nurses' palliative care knowledge, difficulties, and self-reported practices improved over the seven-year study period, especially in terms of expert support in designated cancer hospitals and knowledge among nurses in designated cancer hospitals.
Malignant ascites (MA) carries a poor prognosis. It can have a significant impact on quality of life (QOL), with increasing abdominal distention, pain, and dyspnea. Diuretics typically do not work well for MA. Paracentesis is effective in providing temporary symptom relief but requires frequent repeat procedures. Options for durable symptom management include indwelling catheters, peritoneal ports, peritoneovenous shunts, intraperitoneal (i.p.) catumaxomab, and hyperthermic i.p. chemotherapy. These interventions do not necessarily improve overall survival but may improve QOL.
Head and neck cancer affects vital functions of speech, swallowing, breathing, and appearance. Overall survival remains poor and symptom burden is high for both patients with incurable disease at the end of life and for long-term survivors. Early and concurrent palliative care helps guide treatment decision making and support quality of life during and after treatment. Both narrative competence and directive counsel can affect the concordance of patient goals and tolerance of treatment and outcomes.