Quality of life in patients with thyroid cancer

Background: The prevalence of differentiated thyroid cancer (DTC) is increasing as a consequence of rising incidence, young age at diagnosis and excellent survival. The established treatment is surgery, followed by radioiodine as well as levothyroxine substitution. Because of the longevity of DTC patients, health-related quality of life (HRQoL) has become important. Previous studies have shown decreased HRQoL in DTC, nevertheless, changes of HRQoL over time and factors affecting HRQoL are scarcely described. The aims of this thesis were to investigate long-term HRQoL, how HRQoL changes over time and how anxiety and fear of recurrence affect patients with thyroid cancer. Patients, methods and results: In Studies I-III, SF-36 and a study-specific questionnaire were used. In Studies I-II, long-term HRQoL was measured by including patients 14-17 years after diagnosis. HRQoL was shown to be lower in DTC patients compared with the Swedish general population. Half of the patients had fear of recurrence, and those with fear had significantly lower HRQoL. Thyroid-related symptoms, such as fatigue, sleeping problems, irritability and sweating were measured, and the majority (88%) had at least one of these symptoms. Those with major or moderate symptom intensity had significantly lower HRQoL in eight and four SF-36 domains, respectively. These differences remained after adjustment for age, sex, comorbidities and education. In study III, DTC patients were included at diagnosis and followed-up. After one year, HRQoL was higher compared with baseline in six of eight SF-36 domains. As the majority of the patients were treated with levothyroxine in TSH suppressive doses, this might have affected HRQoL. Surprisingly, those on moderate TSH suppression had lower HRQoL compared with those on complete suppression. In addition, more than half of the patients had a fear of recurrence, with significantly lower HRQoL. Predictive factors of HRQoL at follow-up were studied and in bivariate models, e.g. comorbidities and HRQoL at diagnosis were associated with lower HRQoL at one year. In regression models, poor HRQoL at diagnosis was the only predictive factor for poor HRQoL at one-year of follow-up, after adjustment for comorbidities, age, sex, stage of disease and fear of recurrence. To broaden the understanding about anxiety and fear of recurrence, semi-structured interviews were performed with 21 patients in Study IV. Anxiety was present both in patients with and without recurrence and regardless of sociodemographic factors. Fear of recurrence, follow-up routines, distrust in the healthcare system and lack of information were all sources of anxiety. In some patients, hidden anxiety not mentioned in the beginning became apparent later during the interviews. Everyday life and routines were used as protective strategies against frightening thoughts. Avoiding contact with healthcare helped them gather energy to cope with their disease. Discussion: HRQoL was decreased in DTC patients compared with a general population and was negatively associated with thyroid-related symptoms and fear of recurrence. Interestingly, TSH suppression was not associated to lower HRQoL. The patients’ perception of having a “good cancer” might have discouraged them from discussing anxiety with healthcare. As HRQoL at diagnosis was the only independent predictive factor of HRQoL at one year of follow-up, the evaluation of HRQoL early in the disease trajectory is important. Individualised follow-up routines and evaluation of fears and anxiety during consultations might be helpful, and instead of using the term “good cancer”, “low-risk cancer” can be recommended

Live well, die well – an international cohort study on experiences, concerns and preferences of patients in the last phase of life: the research protocol of the iLIVE study

Introduction Adequately addressing the needs of patients at the end of life and their relatives is pivotal in preventing unnecessary suffering and optimising their quality of life. The purpose of the iLIVE study is to contribute to high-quality personalised care at the end of life in different countries and cultures, by investigating the experiences, concerns, preferences and use of care of terminally ill patients and their families. Methods and analysis The iLIVE study is an international cohort study in which patients with an estimated life expectancy of 6 months or less are followed up until they die. In total, 2200 patients will be included in 11 countries, that is, 200 per country. In addition, one relative per patient is invited to participate. All participants will be asked to fill in a questionnaire, at baseline and after 4 weeks. If a patient dies within 6 months of follow-up, the relative will be asked to fill in a post-bereavement questionnaire. Healthcare use in the last week of life will be evaluated as well; healthcare staff who attended the patient will be asked to fill in a brief questionnaire to evaluate the care that was provided. Qualitative interviews will be conducted with patients, relatives and healthcare professionals in all countries to gain more in-depth insights. Ethics and dissemination The cohort study has been approved by ethics committees and the institutional review boards (IRBs) of participating institutes in all countries. Results will be disseminated through the project website, publications in scientific journals and at conferences. Within the project, there will be a working group focusing on enhancing the engagement of the community at large with the reality of death and dying. Trial registration number NCT04271085

Deprescribing in Palliative Cancer Care

The aim of palliative care is to maintain as high a quality of life (QoL) as possible despite a life-threatening illness. Thus, the prescribed medications need to be evaluated and the benefit of each treatment must be weighed against potential side effects. Medications that contribute to symptom relief and maintained QoL should be prioritized. However, studies have shown that treatment with preventive drugs that may not benefit the patient in end-of-life is generally deprescribed very late in the disease trajectory of cancer patients. Yet, knowing how and when to deprescribe drugs can be difficult. In addition, some drugs, such as beta-blockers, proton pump inhibitors, anti-depressants and cortisone need to be scaled down slowly to avoid troublesome withdrawal symptoms. In contrast, other medicines, such as statins, antihypertensives and vitamins, can be discontinued directly. The aim of this review is to give some advice according to when and how to deprescribe medications in palliative cancer care according to current evidence and clinical praxis. The review includes antihypertensive drugs, statins, anti-coagulants, aspirin, anti-diabetics, proton pump inhibitors, histamin-2-blockers, bisphosphonates denosumab, urologicals, anti-depressants, cortisone, thyroxin and vitamins

Advanced cancer and concomitant dementia : access to specialized palliative care, emergency room, hospital care, and place of death

Background: Dementia and advanced cancer are complex, life-limiting conditions that benefit from specialized palliative care (SPC) interventions at the end of life. The objective was to study possible differences in care for patients with concomitant advanced cancer and dementia (CA-DEM) or cancer only (CA) regarding access to SPC, acute hospital care, and place of death. Materials and methods: A retrospective observational registry study on health care consumption data from the Stockholm Regional Council involving logistic regression analyses of age, sex, living arrangements, comorbidities, dementia diagnosis, and socio-economic status. Results: Of the 12,667 persons aged ≥65 years who died from advanced cancer between 2015 and 2019, 605 had concomitant dementia. Of these, 76% of patients with CA and 42% of patients with CA-DEM had access to SPC (p<.0001). There were more admissions to palliative care for persons not living in nursing homes (p<.0001), women (p<.0001), socioeconomically privileged patients (p<.05), those with fewer comorbidities (p<.0001), and younger patients (<85 years) (p<.0001). Access to SPC reduced ER visits, hospitalizations, and acute hospital deaths for CA, whereas access to SPC only reduced hospital deaths in the CA-DEM group. Conclusions: The probability of being admitted to SPC was lower in cancer patients with known dementia. Access to SPC reduced emergency room visits and acute admissions to hospitals for the whole group, and hospital deaths both for CA and CA-DEM

Symptom management and support in dying patients with cancer and coronavirus disease-19 : a register-based study

Objective: Little is known to what extent access to specialist palliative care (SPC) for cancer patients dying with coronavirus disease-2019 (COVID-19) affects the occurrence of breakthrough symptoms, symptom relief, and overall care, compared to hospital deaths. Our aim was to include patients with both COVID-19 and cancer and compare those dying in hospitals with those dying in SPC with reference to the quality of end-of-life care. Methods: Patients with both cancer and COVID-19 who died in hospitals (n = 430) and within SPC (n = 384) were identified from the Swedish Register of Palliative Care. The hospital and SPC groups were compared regarding the quality of end-of-life care, including the occurrence of 6 breakthrough symptoms during the last week in life, symptom relief, end-of-life care decisions, information, support, and human presence at death. Results: Breakthrough of breathlessness was more common in the hospital patients compared to the SPC patients (61% and 39%, respectively; p &lt;.001), while pain was less common (65% and 78%, respectively; p &lt;.001). Breakthrough of nausea, anxiety, respiratory secretions, or confusion did not differ. All 6 symptoms, except for confusion, were more often completely relieved in SPC (p =.014 to p &lt;.001 in different comparisons). In SPC, a documented decision about the goal being end-of-life care and information about this were more common than in hospitals (p &lt;.001). Also, to have family members present at the time of death and for family members to be offered a follow-up talk afterward was more common in SPC (p &lt;.001). Conclusion: More systematic palliative care routines may be an important factor for better symptom control and higher quality of end-of-life care in hospitals

Parenteral hydration in dying patients with cancer : a national registry study

Context: Clinically assisted hydration during end-of-life care among patients with cancer is controversial; practice varies between clinical settings and countries, and there is a lack of evidence. Objectives: To examine whether breathlessness, respiratory secretion, or confusion correlates with receiving parenteral hydration during end of life, adjusted for sex, age, and place of death. Methods: The Swedish Register of Palliative Care database was used to collect data about the usage of parenteral hydration during the last day of life, and the occurrence of three symptoms during the last week. Adults dying from cancer during 2011–2021 in hospitals, in residential care homes, and within specialized palliative care were included. Correlation between parenteral hydration and symptoms was examined using χ2-test and logistic regression. Results: A total of 147,488 patients were included in the study. Parenteral hydration was more often prescribed to younger persons, to men, and in acute hospitals (compared to other settings), p &lt; 0.001 in all three comparisons. Patients with hematological malignancies (20%) and ovarian cancer (16%) were most likely to receive parenteral hydration, while those with brain tumors (6%) were least likely. The presence of all three analyzed symptoms during the last week (breathlessness, respiratory secretion, and confusion) were significantly correlated with having received parenteral hydration during the last day of life (p &lt; 0.001). In the final logistic regression model adjusted for age, sex, and place of death, the only symptom with remaining correlation to parenteral hydration was breathlessness (OR 1.56, 95% CI 1.50–1.6). Conclusion: There is an association between parenteral hydration and increased breathlessness in patients with cancer. Provision of parenteral hydration is more prevalent in men, younger patients, and those with hematological malignancies or ovarian cancer, and most widespread in acute hospital settings

Symptoms, symptom relief and support in COVID-19 patients dying in hospitals during the first pandemic wave

Background: At the time of the first wave of the COVID-19 pandemic in Sweden, little was known about how effective our regular end-of-life care strategies would be for patients dying from COVID-19 in hospitals. The aim of the study was to describe and evaluate end-of-life care for patients dying from COVID-19 in hospitals in Sweden up until up until 12 November 2020. Methods: Data were collected from the Swedish Register of Palliative Care. Hospital deaths during 2020 for patients with COVID-19 were included and compared to a reference cohort of hospital patients who died during 2019. Logistic regression was used to compare the groups and to control for impact of sex, age and a diagnosis of dementia. Results: The COVID-19 group (1476 individuals) had a lower proportion of women and was older compared to the reference cohort (13,158 individuals), 81.8 versus 80.6 years (p &lt;.001). Breathlessness was more commonly reported in the COVID-19 group compared to the reference cohort (72% vs 43%, p &lt;.001). Furthermore, anxiety and delirium were more commonly and respiratory secretions, nausea and pain were less commonly reported during the last week in life in the COVID-19 group (p &lt;.001 for all five symptoms). When present, complete relief of anxiety (p =.021), pain (p =.025) and respiratory secretions (p =.037) was more often achieved in the COVID-19 group. In the COVID-19 group, 57% had someone present at the time of death compared to 77% in the reference cohort (p &lt;.001). Conclusions: The standard medical strategies for symptom relief and end-of-life care in hospitals seemed to be acceptable. Symptoms in COVID-19 deaths in hospitals were relieved as much as or even to a higher degree than in hospitals in 2019. Importantly, though, as a result of closing the hospitals to relatives and visitors, patients dying from COVID-19 more frequently died alone, and healthcare providers were not able to substitute for absent relatives

Mental health and psychosocial consequences linked to radiation emergencies - Increasingly recognised concerns

A major radiological or nuclear emergency may, apart from causing a substantial loss of life and physical damage, also put a substantial strain on affected societies with social, economic and political consequences. Although such emergencies are relatively uncommon, it is now being increasingly recognised that their subsequent psychosocial impact can be widespread and long lasting. Mental health effects, such as depression, anxiety and post-traumatic stress disorder, are highly represented in a population affected by a radiation disaster. In order to reach the majority of the people affected by radiation accidents, we need to be aware of how to distribute relevant and accurate information related to both short- and long-term medical effects. Effective risk communication is associated with improved compliance with any given recommendations. It is important to protect the public from physical radiation damage, but it is also essential to take into account the social and mental health effects that radiation disasters may induce. This article provides a brief review of recent reporting on the psychological consequences after a major radiation emergency

Increased patient satisfaction by integration of palliative care into geriatrics-A prospective cohort study

BACKGROUND: Integration of oncology and palliative care has been shown to increase quality of life in advanced disease. To meet the needs of the growing older population, integration of palliative care and geriatrics has been proposed but scarcely described.OBJECTIVES: The aim of this study was to integrate palliative care into geriatrics by a structured care guide, the Swedish Palliative Care Guide, and to evaluate its effect on patient satisfaction, health-related quality of life and symptom burden, compared to a control group.METHODS: Geriatric in-patients over 65 years of age were included in the study, those with cognitive impairment were excluded. Data was collected before (baseline) and after the implementation (intervention) of the Swedish Palliative Care Guide. Patient satisfaction was evaluated two weeks after discharge with questions from a national patient survey. Health-related quality of life was measured with EQ-5D-3L and symptom burden with Edmonton Symptom Assessment Scale.RESULTS: In total, 400 patients were included, 200 in the baseline- and intervention group, respectively. Mean age was 83 years in both groups. Patient satisfaction was significantly higher in nine out of ten questions (p = 0.02-<0.001) in the intervention group compared to baseline. No differences between the groups were seen in health-related quality of life or symptom burden.CONCLUSION: A significant effect on patient satisfaction was seen after implementation of the Swedish Palliative Care Guide in geriatric care. Thus, integration of palliative care and geriatrics could be of substantial benefit in the growing population of older adults with multimorbidity and frailty

Increased patient satisfaction by integration of palliative care into geriatrics—A prospective cohort study

Background Integration of oncology and palliative care has been shown to increase quality of life in advanced disease. To meet the needs of the growing older population, integration of palliative care and geriatrics has been proposed but scarcely described. Objectives The aim of this study was to integrate palliative care into geriatrics by a structured care guide, the Swedish Palliative Care Guide, and to evaluate its effect on patient satisfaction, health-related quality of life and symptom burden, compared to a control group. Methods Geriatric in-patients over 65 years of age were included in the study, those with cognitive impairment were excluded. Data was collected before (baseline) and after the implementation (intervention) of the Swedish Palliative Care Guide. Patient satisfaction was evaluated two weeks after discharge with questions from a national patient survey. Health-related quality of life was measured with EQ-5D-3L and symptom burden with Edmonton Symptom Assessment Scale. Results In total, 400 patients were included, 200 in the baseline- and intervention group, respectively. Mean age was 83 years in both groups. Patient satisfaction was significantly higher in nine out of ten questions (p = 0.02-Conclusion A significant effect on patient satisfaction was seen after implementation of the Swedish Palliative Care Guide in geriatric care. Thus, integration of palliative care and geriatrics could be of substantial benefit in the growing population of older adults with multimorbidity and frailty