Non-invasive ventilation in the care of patients with chronic obstructive pulmonary disease with palliative care needs: a scoping review.

BACKGROUND: Patients with severe chronic obstructive pulmonary disease (COPD) could have palliative care (PC) needs because of unmet needs such as dyspnoea. This may lead to anxiety and may have an impact on patients' ability to perform daily activities of living. PC can be started when patients with COPD have unmet needs and can be provided alongside disease-modifying therapies. Non-invasive ventilation (NIV) could be an important measure to manage dyspnoea in patients with COPD in need of PC. A scoping review was conducted to gain an overview of the existing research and to identify knowledge gaps. The aim of this scoping review was to systematically map published studies on the use of NIV in patients with COPD with PC needs, including the perspectives and experiences of patients, families, and healthcare professionals (HCPs). METHODS: This review was conducted following the framework of Arksey and O'Malley. The reporting of the review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. The review protocol was published. AMED, CINAHL, Embase, MEDLINE, PEDro, and PsycInfo were searched from inception to November 14, 2022. The included studies had to report the perspectives and experiences of COPD patients, relatives, and HCPs regarding NIV in the care of patients with COPD with PC needs. In pairs, the authors independently assessed studies' eligibility and extracted data. The data were organised thematically. The results were discussed in a consultation exercise. RESULTS: This review included 33 papers from 32 studies. Four thematic groupings were identified: preferences and attitudes towards the use of NIV; patient participation in the decision-making process of NIV treatment; conflicting results on the perceived benefits and burdens of treatment; and heterogenous clinical outcomes in experimental studies. Patients perceived NIV as a 'life buoy' to keep them alive. Many patients wanted to take part in the decision-making process regarding NIV treatment but expressed varying degrees of inclusion by HCPs in such decision-making. Conflicting findings were identified regarding the perceived benefits and burdens of NIV treatment. Diversity in heterogeneous clinical outcomes were reported in experimental studies. CONCLUSIONS: There is a need for more studies designed to investigate the effectiveness of NIV as a palliative measure for patients with COPD with PC needs using comprehensive outcomes. It is especially important to gain more knowledge on the experiences of all stakeholders in the use of home-based NIV treatment to these patients.

Post-traumatic stress symptoms six months after ICU admission with COVID-19: Prospective observational study.

AIMS AND OBJECTIVES: The aim of this study was to investigate the prevalence of post-traumatic stress symptoms, and to identify possible predictive factors in Norwegian intensive care unit survivors, 6 months after admission to the intensive care unit with COVID-19. BACKGROUND: The SARS CoV-2 virus causing COVID-19 has spread worldwide since it was declared a pandemic in March 2020. The most severely ill patients have been treated in the intensive care due to acute respiratory failure and also acute respiratory distress syndrome. It is well documented that these severe conditions can lead to complex and long-lasting symptoms, such as psychological distress, and was, therefore, investigated for the specific COVID-19 population. DESIGN: Prospective observational study. METHODS: Clinical data and patient reported outcome measures were collected by the Norwegian Intensive Care and Pandemic Registry and by the study group 6 months after admission to an intensive care unit. RESULTS: Among 222 COVID-19 patients admitted to Norwegian intensive care units between 10 March and 6 July 2020, 175 survived. The study sample consisted of 131 patients who responded to at least one patient reported outcome measure at 6 months following admission. The primary outcome was self-reported post-traumatic stress symptoms, using the Impact of Event Scale-6 (n = 89). Of those, 22.5% reported post-traumatic stress symptoms 6 months after admission. Female gender, younger age and having a high respiratory rate at admission were statistically significant predictive factors for reporting post-traumatic stress symptoms. CONCLUSIONS: The result is in accordance with previously published research with comparable populations, suggesting that for many COVID-19 survivors psychological distress is a part of the post-acute sequelae. Results from the present study should be replicated in larger datasets. RELEVANCE TO CLINICAL PRACTICE: This project provides important insight to post-acute sequelae after COVID-19 that patients may experience after critical illness.

Prevalence of and predictive factors associated with high levels of post-traumatic stress symptoms 3 months after intensive care unit admission: A prospective study.

BACKGROUND: Post-traumatic stress symptoms (PTSS) following intensive care unit (ICU) treatment may increase morbidity and mortality. Therefore, it is important to identify patients at risk of suffering from such symptoms. OBJECTIVES: The objective of this study was to describe the prevalence and identify possible predictive factors associated with high levels of PTSS 3 months after ICU admission. METHODS: A multicentre, observational study was carried out in six ICUs in Norway. Patients aged ≥18 years were included. The Impact of Event Scale-Revised measured PTSS 3 months after ICU admission. The impacts of pre-ICU measures; demographic and clinical measures; and daily measures of pain, agitation, and delirium were analysed using univariate and multivariate logistic regression models. RESULTS: In total, of the 273 patients included, the prevalence rate of high levels of PTSS was 19.8% (n = 54) 3 months after ICU admission (95% confidence interval [CI]: [15.2, 25.0]). Female gender, age, pre-ICU unemployment, a minimum of one episode of agitation or delirium, and pre-ICU level of functioning in daily living were all significantly associated with high levels of PTSS in univariate logistic analyses. In the multivariate logistic regression, two models were analysed. In model 1, episodes of agitation during ICU stay (odds ratio [OR] = 4.73; 95% CI: [1.17, 19.0]), pre-ICU unemployment (OR = 3.33; 95% CI: [1.26, 8.81]), and pre-ICU level of functioning in daily living (OR = 0.78; 95% CI: [0.63, 0.96]) (implying lower level) increased the odds of reporting high levels of PTSS. In model 2, pre-ICU unemployment (OR = 2.70; 95% CI: [1.05, 6.93]) and pre-ICU level of functioning in daily living (OR = 0.77; 95% CI: [0.62, 0.95]) (implying lower level) increased the odds of reporting high levels of PTSS. CONCLUSIONS: Healthcare personnel are suggested to be aware of ICU patients' pre-ICU employment status, pre-ICU functioning in daily living, and agitation during ICU stay to identify those at risk of PTSS after discharge.

Inter-rater agreement between patient- and proxy-reported cognitive functioning in intensive care unit patients: A cohort study.

BACKGROUND: Health status, including cognitive functioning before critical illness, is associated with long-term outcomes in intensive care unit survivors. Premorbid data are therefore of importance in longitudinal studies. Few patients can self-report at intensive care admission. Consequently, proxy assessments of patients' health status are used. However, it remains unclear how accurately proxies can report on an intensive care patient's cognitive status. OBJECTIVES: The aim of this study was to examine the agreement between patient- and proxy-reporting of the Cognitive Failures Questionnaire and to compare the agreement between proxy reports using the latter questionnaire and the Informant Questionnaire of Cognitive Decline in the Elderly as a reference. METHODS: The present cohort study is part of a longitudinal multicentre study collecting both patient and proxy data using questionnaires and clinical data from medical records during intensive care unit stays. Agreement on patient and proxy pairs was examined using intraclass correlation coefficient (ICC), Spearman's correlation, percentage agreement, and Gwet's AC1 statistics. Agreement between the proxy-reported questionnaires was examined using percentage agreement and Gwet's AC1 statistics. RESULTS: In total, we collected 99 pairs of patient-proxy assessments and 158 proxy-proxy assessments. The ICC for the sum scores revealed moderate agreement (n = 99; ICC = 0.59; 99% confidence interval [CI]: [0.30-0.76]) between patient and proxy. Agreement on items was poor (AC1 = 0.13; 99% CI: [0.01-0.24]) to moderate (AC1 = 0.55; 99% CI: [0.43-0.68]). Agreement using cut-off scores (>43) to indicate cognitive impairment was very good (89.9%, AC1 = 0.87; 99% CI: [0.79-0.95]). Agreement between the proxy-reported Cognitive Failures Questionnaire (>43) and the reference questionnaire (≥3.5) was also very good (n = 158; 85%, AC1 = 0.82; 99% CI: [0.74-0.90]). CONCLUSIONS: Proxy assessments of the Cognitive Failures Questionnaire (>43) may be used to indicate cognitive impairment if patients are unable to self-report. Agreement was high between the two questionnaires determined by proxies, showing that these can be used interchangeably to assess cognitive functioning if proxy reporting is needed.

Long-term functional disabilities in intensive care unit survivors: A prospective cohort study.

BACKGROUND: Functional disabilities are common in intensive care unit (ICU) survivors and may affect their ability to live independently. Few previous studies have investigated long-term functional outcomes with health status before ICU admission (pre-ICU health), and they are limited to specific patient groups. OBJECTIVES: The objective of this study was to investigate the prevalence of functional disabilities and examine pre-ICU health variables as possible predictive factors of functional disabilities 12 months after ICU admission in a mixed population of ICU survivors. METHODS: This prospective cohort study was conducted in six ICUs in Norway. Data on pre-ICU health were collected as soon as possible after ICU admission using patients, proxies, and patient electronic health records and at 12 months after ICU admission. Self-reported functional status was assessed using the Katz Index of independence in personal activities of daily living (P-ADL) and the Lawton instrumental activities of daily living scale (I-ADL). RESULTS: A total of 220 of 343 (64%) ICU survivors with data on pre-ICU health completed the questionnaires at 12 months and reported the following functional disabilities at 12 months: 31 patients (14.4%) reported P-ADL dependencies (new in 16 and persisting in 15), and 80 patients (36.4%) reported I-ADL dependencies (new in 41 and persisting in 39). In a multivariate analysis, worse baseline P-ADL and I-ADL scores were associated with dependencies in P-ADLs (odds ratio [OR]: 1.87; 95% confidence interval [CI]: 1.14-3.06) and I-ADLs (OR: 1.52; 95% CI: 1.03-2.23), respectively, at 12 months. Patients who were employed were less likely to report I-ADL dependencies at 12 months (OR: 0.34; 95% CI: 0.12-0.95). CONCLUSION: In a subsample of ICU survivors, patients reported functional disabilities 12 months after ICU admission, which was significantly associated with their pre-ICU functional status. Early screening of pre-ICU functional status may help identify patients at risk of long-term functional disabilities. ICU survivors with pre-ICU functional disabilities may find it difficult to improve their functional status.

Pregnant women with acute respiratory distress syndrome triggered by COVID-19. / Gravide med akutt, alvorlig respirasjonssvikt utløst av covid-19.

Background: Pregnant women with COVID-19 are probably at increased risk of serious illness. The objective of this study was to describe the course of illness in pregnant women admitted to the intensive care unit (ICU) with acute respiratory distress syndrome triggered by COVID-19. Material and method: Pregnant women with COVID-19 were registered on admission to an ICU at Rikshospitalet, Oslo University Hospital in the period March 2020 to May 2023. We reviewed the patients' medical records retrospectively and describe clinical trajectories, management parameters and laboratory data collected during the period in intensive care. Self-perceived health was surveyed 15 months after discharge from intensive care. Results: Thirteen pregnant women were admitted in the period from February to December 2021. All met criteria for acute respiratory distress syndrome (ARDS) and were treated with corticosteroids and mechanical ventilation according to current guidelines. None of the patients had been vaccinated against COVID-19. Ten patients were orally intubated after therapeutic failure with non-invasive mechanical ventilation. One patient was treated with extracorporeal membrane oxygenation (ECMO). All patients survived their stay in intensive care, but there were two cases of intrauterine fetal demise. Almost half of the patients reported moderate to significantly reduced self-perceived health and quality of life 15 months after discharge from intensive care. Interpretation: All pregnant women admitted to an ICU at Rikshospitalet, Oslo University Hospital with ARDS triggered by COVID-19 survived hospitalisation, but several had symptoms that persisted long after their stay in the ICU.

A multicenter international prospective study of the validity and reliability of a COVID-19-specific health-related quality of life questionnaire.

PURPOSE: To develop and validate a health-related quality of life (HRQoL) questionnaire for patients with current or previous coronavirus disease (COVID-19) in an international setting. METHODS: This multicenter international methodology study followed standardized guidelines for a four-phase questionnaire development. Here, we report on the pretesting and validation of our international questionnaire. Adults with current or previous COVID-19, in institutions or at home were eligible. In the pretesting, 54 participants completed the questionnaire followed by interviews to identify administration problems and evaluate content validity. Thereafter, 371 participants completed the revised questionnaire and a debriefing form to allow preliminary psychometric analysis. Validity and reliability were assessed (correlation-based methods, Cronbach's α, and intra-class correlation coefficient). RESULTS: Eleven countries within and outside Europe enrolled patients. From the pretesting, 71 of the 80 original items fulfilled the criteria for item-retention. Most participants (80%) completed the revised 71-item questionnaire within 15 min, on paper (n = 175) or digitally (n = 196). The final questionnaire included 61 items that fulfilled criteria for item retention or were important to subgroups. Item-scale correlations were > 0.7 for all but nine items. Internal consistency (range 0.68-0.92) and test-retest results (all but one scale > 0.7) were acceptable. The instrument consists of 15 multi-item scales and six single items. CONCLUSION: The Oslo COVID-19 QLQ-W61© is an international, stand-alone, multidimensional HRQoL questionnaire that can assess the symptoms, functioning, and overall quality of life in COVID-19 patients. It is available for use in research and clinical practice. Further psychometric validation in larger patient samples will be performed.

A survey of preferences for respiratory support in the intensive care unit for patients with acute hypoxaemic respiratory failure.

BACKGROUND: When caring for mechanically ventilated adults with acute hypoxaemic respiratory failure (AHRF), clinicians are faced with an uncertain choice between ventilator modes allowing for spontaneous breaths or ventilation fully controlled by the ventilator. The preferences of clinicians managing such patients, and what motivates their choice of ventilator mode, are largely unknown. To better understand how clinicians' preferences may impact the choice of ventilatory support for patients with AHRF, we issued a survey to an international network of intensive care unit (ICU) researchers. METHODS: We distributed an online survey with 32 broadly similar and interlinked questions on how clinicians prioritise spontaneous or controlled ventilation in invasively ventilated patients with AHRF of different severity, and which factors determine their choice. RESULTS: The survey was distributed to 1337 recipients in 12 countries. Of these, 415 (31%) completed the survey either fully (52%) or partially (48%). Most respondents were identified as medical specialists (87%) or physicians in training (11%). Modes allowing for spontaneous ventilation were considered preferable in mild AHRF, with controlled ventilation considered as progressively more important in moderate and severe AHRF. Among respondents there was strong support (90%) for a randomised clinical trial comparing spontaneous with controlled ventilation in patients with moderate AHRF. CONCLUSIONS: The responses from this international survey suggest that there is clinical equipoise for the preferred ventilator mode in patients with AHRF of moderate severity. We found strong support for a randomised trial comparing modes of ventilation in patients with moderate AHRF.

Simulation-based learning in palliative care in postgraduate nursing education: a scoping review.

BACKGROUND: Nurses require advanced competence in palliative care, but they face wide variations in education and a shortage in opportunities for clinical placement. Simulation-based learning (SBL) can enable students to develop clinical skills, critical thinking and confidence. No scoping reviews to date have mapped the use of SBL in palliative care within postgraduate nursing education. METHODS: The aim of this scoping review was to systematically map published studies on the use of SBL in palliative care in postgraduate nursing education. A scoping review was conducted using Arksey and O'Malley's (Int J Soc Res Meth 8(1):19-32, 2005) methodological framework. A systematic and comprehensive search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL), the Education Resources Information Center (ERIC), Ovid MEDLINE, Ovid EMBASE, Allied and Complementary Medicine and PsycINFO was performed for studies published between January 2000 and April 2022. Two authors independently assessed papers for inclusion and extracted data. Reporting followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist. The protocol was registered on the Open Science Framework. RESULTS: This review includes 10 studies. Three thematic groupings were identified: enhanced understanding of the importance of teamwork, interdisciplinarity and interpersonal skills; preparedness and confidence in one's ability to communicate during emotionally challenging situations; and impact and relevance to one's own clinical practice. CONCLUSIONS: The use of SBL in palliative care in postgraduate nursing education seems to enhance students' understanding of the importance of teamwork and interdisciplinarity. The review shows contradictory results regarding whether SBL in palliative care increases students' confidence in their communication skills. Postgraduate nursing students experienced personal growth after participating in SBL. Because our findings indicate that limited research has been conducted within this field, future research should (1) explore postgraduate nursing students' experiences with SBL in palliative care with a focus on more practical content such as symptom management, (2) examine the relevance and application of SBL in clinical practice, and (3) be reported in line with recommendations on the reporting of simulation research.

Patient characteristics, management and outcomes in a Nordic subset of the "large observational study to understand the global impact of severe acute respiratory failure" (LUNG SAFE) study.

BACKGROUND: The "Large observational study to understand the global impact of severe acute respiratory failure" (LUNG SAFE) study described the worldwide epidemiology and management of patients with acute hypoxaemic respiratory failure (AHRF). Here, we present the Nordic subset of data from the LUNG SAFE cohort. METHODS: We extracted LUNG SAFE data for adults fulfilling criteria for AHRF in intensive care units (ICU) in Denmark, Norway and Sweden, including demographics, co-morbidities, clinical assessment and management characteristics, 90-day survival and length-of-stay (LOS). We analysed ICU LOS with linear regression, and associations between risk factors and mortality were quantified using Cox regression. RESULTS: We included 192 patients, with a median age of 64 years (IQR 55, 72), and a male-to-female ratio of 2:1. The majority had one or more co-morbidities, and clinicians identified pneumonia as the primary cause of respiratory failure in 56% and acute respiratory distress syndrome (ARDS) in 21%. Median ICU LOS and duration of invasive mechanical ventilation (IMV) were 5 and 3 days. Tidal volumes (TV) were frequently larger than that supported by evidence and IMV allowing for spontaneous ventilation was common. Younger age, co-morbidity, surgical admission and ARDS were associated with ICU LOS. Sixty-one patients (32%) were dead at 90 days. Age and a non-surgical cause of admission were associated with death. CONCLUSIONS: In this subset of LUNG SAFE, ARDS was often not recognised in patients with AHRF and management frequently deviated from evidence-based practices. ICU LOS was generally short, and mortality was attributable to known risk factors.

A descriptive study of the surge response and outcomes of ICU patients with COVID-19 during first wave in Nordic countries.

BACKGROUND: We sought to provide a description of surge response strategies and characteristics, clinical management and outcomes of patients with severe COVID-19 in the intensive care unit (ICU) during the first wave of the pandemic in Denmark, Finland, Iceland, Norway and Sweden. METHODS: Representatives from the national ICU registries for each of the five countries provided clinical data and a description of the strategies to allocate ICU resources and increase the ICU capacity during the pandemic. All adult patients admitted to the ICU for COVID-19 disease during the first wave of COVID-19 were included. The clinical characteristics, ICU management and outcomes of individual countries were described with descriptive statistics. RESULTS: Most countries more than doubled their ICU capacity during the pandemic. For patients positive for SARS-CoV-2, the ratio of requiring ICU admission for COVID-19 varied substantially (1.6%-6.7%). Apart from age (proportion of patients aged 65 years or over between 29% and 62%), baseline characteristics, chronic comorbidity burden and acute presentations of COVID-19 disease were similar among the five countries. While utilization of invasive mechanical ventilation was high (59%-85%) in all countries, the proportion of patients receiving renal replacement therapy (7%-26%) and various experimental therapies for COVID-19 disease varied substantially (e.g. use of hydroxychloroquine 0%-85%). Crude ICU mortality ranged from 11% to 33%. CONCLUSION: There was substantial variability in the critical care response in Nordic ICUs to the first wave of COVID-19 pandemic, including usage of experimental medications. While ICU mortality was low in all countries, the observed variability warrants further attention.

Health-related quality of life issues, including symptoms, in patients with active COVID-19 or post COVID-19; a systematic literature review.

PURPOSE: This systematic review was performed to identify all relevant health-related quality of life (HRQoL) issues associated with COVID-19. METHODS: A systematic literature search was undertaken in April 2020. In four teams of three reviewers each, all abstracts were independently reviewed for inclusion by two reviewers. Using a pre-defined checklist of 93 criteria for each publication, data extraction was performed independently by two reviewers and subsequently compared and discussed. If necessary, a third reviewer resolved any discrepancies. The search was updated in February 2021 to retrieve new publications on HRQoL issues including issues related to the long-term consequences of COVID-19. RESULTS: The search in April 2020 identified 3342 potentially relevant publications, and 339 publications were selected for full-text review and data extraction. We identified 75 distinct symptoms and other HRQoL issues categorized into 12 thematic areas; from general symptoms such as fever, myalgia, and fatigue, to neurological and psychological issues. The updated search revealed three extra issues experienced during active disease and long-term problems with fatigue, psychological issues and impaired cognitive function. CONCLUSION: This first comprehensive systematic review provides a detailed overview of the wide range of HRQoL issues experienced by patients with COVID-19 throughout the course of the disease. It demonstrates the devastating impact of the disease and provides critically important information for clinicians, to enable them to better recognize the disease and to provide knowledge important for treatment and follow-up. The results provided the foundation for the international development of a COVID-19 specific patient-reported HRQoL questionnaire.

Characteristics, management and survival of ICU patients with coronavirus disease-19 in Norway, March-June 2020. A prospective observational study.

BACKGROUND: Norwegian hospitals have operated within capacity during the COVID-19 pandemic. We present patient and management characteristics, and outcomes for the entire cohort of adult (>18 years) COVID-19 patients admitted to Norwegian intensive care units (ICU) from 10 March to 19 June 2020. METHODS: Data were collected from The Norwegian intensive care and pandemic registry (NIPaR). Demographics, co-morbidities, management characteristics and outcomes are described. ICU length of stay (LOS) was analysed with linear regression, and associations between risk factors and mortality were quantified using Cox regression. RESULTS: In total, 217 patients were included. The male to female ratio was 3:1 and the median age was 63 years. A majority (70%) had one or more co-morbidities, most frequently cardiovascular disease (39%), chronic lung disease (22%), diabetes mellitus (20%), and obesity (17%). Most patients were admitted for acute hypoxaemic respiratory failure (AHRF) (91%) and invasive mechanical ventilation (MV) was used in 86%, prone ventilation in 38% and 25% of patients received a tracheostomy. Vasoactive drugs were used in 79% and renal replacement therapy in 15%. Median ICU LOS and time of MV was 14.0 and 12.0 days. At end of follow-up 45 patients (21%) were dead. Age, co-morbidities and severity of illness at admission were predictive of death. Severity of AHRF and male gender were associated with LOS. CONCLUSIONS: In this national cohort of COVID-19 patients, mortality was low and attributable to known risk factors. Importantly, prolonged length-of-stay must be taken into account when planning for resource allocation for any next surge.

Spontaneous versus controlled mechanical ventilation in patients with acute respiratory distress syndrome - Protocol for a scoping review.

BACKGROUND: In caring for mechanically ventilated adults with acute respiratory distress syndrome (ARDS), clinicians are faced with an uncertain choice between controlled or spontaneous breathing modes. Observational data indicate considerable practice variation which may be driven by differences in sedation and mobilisation practices. The benefits and harms of either strategy are largely unknown. METHODS: A scoping review will be prepared according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews. We will review the clinical literature on controlled vs spontaneous breathing in mechanically ventilated patients with ARDS of any severity. Studies reporting on qualitative and/or quantitative data from any world region will be considered. For inclusion, studies must include data on mechanically ventilated patients with ARDS who are allowed spontaneous (triggered ventilation). Searches will be conducted in four electronic databases without any limitation on publication date and language. We will assess the quality of evidence according to the Grading of Recommendations Assessment, Development and Evaluation (GRADE) methodology, where appropriate. CONCLUSION: We will perform a scoping review of the clinical literature on controlled vs spontaneously breathing in mechanically ventilated patients who fulfil ARDS criteria (including acute lung injury). This is to elucidate if a pragmatic clinical trial comparing controlled and spontaneous mechanical ventilation is warranted and will allow us to formulate relevant research questions.

Cancer patients' diagnosis and symptoms and their family caregivers' self-efficacy and social support are associated with different caregiver reactions.

OBJECTIVE: To describe caregiver and patient characteristics that are associated with negative and positive reactions in family caregivers (FCs) of cancer outpatients. METHODS: A total of 194 FCs completed the Caregiver Reaction Assessment (CRA) scale 6 months after start of new treatment in patients with breast, ovarian, colorectal, or head and neck cancer. Linear regression models were used to examine which caregiver characteristics (i.e. demographic, self-efficacy and social support) and patient characteristics (i.e. clinical, symptoms) were associated with each of the CRA subscales (caregiver esteem, lack of family support, and impact on health, schedule and finances). RESULTS: Less social support was significantly associated with poorer scores on all subscales (B -0.01/0.01). Also, poorer scores on one or more of the CRA subscales were reported by FCs who had lower self-efficacy (B -0.02), a higher level of education (primary B 0.42, secondary B 0.22), more medical conditions (B 0.06), and were female (B 0.20), and by FCs of patients with colorectal (B 0.45) or head and neck cancer (B 0.27), and those who reported a higher symptom burden (B 0.28/0.49). CONCLUSION: Both caregiver and patient factors were associated with reactions in FCs of cancer outpatients. This information can be used by healthcare personnel to identify FCs who need additional support (e.g. counselling), and to increase focus on strengths and assets within the caregivers (e.g. support groups).

Quality of life in family caregivers of patients in the intensive care unit: A longitudinal study.

BACKGROUND: Family caregivers of patients in the intensive care unit (ICU) experience impairments in the quality of life. Previous studies report that psychological quality of life improves over time, but there has been limited longitudinal research, and measurement points have differed. Factors such as age, gender, and posttraumatic stress symptoms have been found to be associated with the quality of life, but level of hope and its associations with the quality of life have not been investigated. OBJECTIVES: The objective of this study was (1) to evaluate changes in the quality of life in family caregivers during the first year after a patient's admission to the ICU and (2) to identify associations between patients' and family caregivers' background characteristics, posttraumatic stress symptoms, hope, and quality of life. METHODS: A longitudinal study design with five measurement points was used. Family caregivers completed study questionnaires at enrolment into the study and at 1, 3, 6, and 12 months after the patient's admission to the ICU. The quality of life was measured with the 12-Item Short Form Health Survey. RESULTS: Family caregivers (N = 211) reported improved psychological quality of life during the first year after the patient's admission to the ICU, but it was still lower than the psychological quality of life reported in norm-based data. Being on sick leave, consulting healthcare professionals (e.g., general practitioner), and increased level of posttraumatic stress symptoms were significantly associated with psychological quality of life, whereas hope was not. Reported physical quality of life was comparable to norm-based data. CONCLUSION: Family caregivers of patients in the ICU reported impairments in quality of life during the first year after the patient's admission to the ICU. Being on sick leave, consulting healthcare professionals, and reduced posttraumatic stress symptoms may improve mental quality of life.

Patient factors and quality of life outcomes differ among four subgroups of oncology patients based on symptom occurrence.

CONTEXT: Reviews of the literature on symptoms in oncology patients undergoing curative treatment, as well as patients receiving palliative care, suggest that they experience multiple, co-occurring symptoms and side effects. OBJECTIVES: The purposes of this study were to determine if subgroups of oncology patients could be identified based on symptom occurrence rates and if these subgroups differed on a number of demographic and clinical characteristics, as well as on quality of life (QoL) outcomes. METHODS: Latent class analysis (LCA) was used to identify subgroups (i.e. latent classes) of patients with distinct symptom experiences based on the occurrence rates for the 13 most common symptoms from the Memorial Symptom Assessment Scale. RESULTS: In total, 534 patients with breast, head and neck, colorectal, or ovarian cancer participated. Four latent classes of patients were identified based on probability of symptom occurrence: all low class [i.e. low probability for all symptoms (n = 152)], all high class (n = 149), high psychological class (n = 121), and low psychological class (n = 112). Patients in the all high class were significantly younger compared with patients in the all low class. Furthermore, compared to the other three classes, patients in the all high class had lower functional status and higher comorbidity scores, and reported poorer QoL scores. Patients in the high and low psychological classes had a moderate probability of reporting physical symptoms. Patients in the low psychological class reported a higher number of symptoms, a lower functional status, and poorer physical and total QoL scores. CONCLUSION: Distinct subgroups of oncology patients can be identified based on symptom occurrence rates. Patient characteristics that are associated with these subgroups can be used to identify patients who are at greater risk for multiple co-occurring symptoms and diminished QoL, so that these patients can be offered appropriate symptom management interventions.

The relationships between demographic and clinical characteristics and quality of life during and after radiotherapy: in women with breast cancer.

PURPOSE: The purpose of this longitudinal study was to investigate quality of life (QOL) before, during, and after the course of radiotherapy (RT) and to identify risk factors for diminished QOL in women with breast cancer. METHODS: Patients (N = 188) completed the short-form 12 (SF-12), the Karnofsky Performance Status Scale, Memorial Symptom Assessment Scale, and the Self-Administrated Comorbidity Questionnaire 1 week prior to the start of RT. To assess changes in QOL, patients also completed the SF-12 1, 2, 3, and 6 months after the baseline. A random-intercept and slope model (mixed model) for each patient was used to estimate linear trends for the mental component score and physical component score of QOL (five time points for each patient). Descriptive statistics were used to analyze demographic and clinical characteristics. RESULTS: The physical component score (PCS) did not change significantly (p = 0.078) during the course of RT in women with breast cancer. An increase in the number of symptoms and a higher comorbidity profile was negatively related to the PCS. The mental component score (MCS) did not change from the start of RT until the 2-month assessment, but increased significantly after 2 months (p = 0.044). An increase in the number of symptoms was negatively related to the MCS. CONCLUSION: The MCS and PCS of QOL remained stable at a diminished level except for the MCS which improved between 2 and 6 months after the start of RT. The total number of symptoms was the only variable that was negatively associated with both component scores (MCS and PCS) during the 6 months.