Family Members' Engagement in Symptom Communication, Assessment, and Management in the Intensive Care Unit: A Qualitative Study.

BACKGROUND: Opportunities for communication and participation in decision making are limited for critically ill patients, but family members serving as surrogates enable empowerment of these patients. OBJECTIVE: The aim of this study was to explore family members' engagement in symptom communication in the intensive care unit. METHODS: A qualitative descriptive design using fieldwork methodology with triangulation of participant observation and individual interviews was conducted. Nine mechanically ventilated patients were observed in interaction with family members and clinicians in the intensive care unit. Six of the observed patients, 6 family members, and 9 clinicians were interviewed after participant observation. Field notes and transcripts were analyzed using Braun and Clarke's method of thematic analysis. RESULTS: Family members engaged actively in symptom communication, assessment, and management, and there were barriers and facilitators to family engagement. Three main themes and 9 subthemes describing family engagement emerged: (1) intermediary role (recognize and report symptoms, provide patient information, and assist in communication), (2) independent role (provide familiarity, manage symptoms, and promote patient communication), and (3) conditions for family engagement (intensive care unit environment, relationship with the patient, and patient preferences). DISCUSSION: Family members have unique knowledge of the patient that differs from and complement the competence of the staff, and might contribute to improved symptom communication. Future research should examine how family members can contribute to symptom communication, assessment, and management.

A comparison of the prevalence of dry mouth and other symptoms using two different versions of the Edmonton Symptom Assessment System on an inpatient palliative care unit.

BACKGROUND: Symptom assessment is key to effective symptom management and palliative care for patients with advanced cancer. Symptom prevalence and severity estimates vary widely, possibly dependent on the assessment tool used. Are symptoms specifically asked about or must the patients add them as additional symptoms? This study compared the prevalence and severity of patient-reported symptoms in two different versions of a multi-symptom assessment tool. In one version, three symptoms dry mouth, constipation, sleep problems were among those systematically assessed, while in the other, these symptoms had to be added as an "Other problem". METHODS: This retrospective cross-sectional study included adult patients with advanced cancer at an inpatient palliative care unit. Data were collected from two versions of the Edmonton Symptom Assessment System (ESAS): modified (ESAS-m) listed 11 symptoms and revised (ESAS-r) listed 9 and allowed patients to add one "Other problem". Seven similar symptoms were listed in both versions. RESULTS: In 2013, 184 patients completed ESAS-m, and in 2017, 156 completed ESAS-r. Prevalence and severity of symptoms listed in both versions did not differ. In ESAS-m, 83% reported dry mouth, 73% constipation, and 71% sleep problems, but on ESAS-r, these symptoms were reported by only 3%, 15% and < 1%, respectively. Although ESAS-r severity scores for these three symptoms were higher than on ESAS-m, differences did not reach statistical significance. CONCLUSION: We identified significant differences in patient symptom reporting based on whether symptoms like dry mouth, obstipation and sleep problems were specifically assessed or had to be added by patients as an "Other problem".

Psychometric properties of a short version of Lee Fatigue Scale used as a generic PROM in persons with stroke or osteoarthritis: assessment using a Rasch analysis approach.

BACKGROUND: Fatigue is a common symptom associated with a wide range of diseases and needs to be more thoroughly studied. To minimise patient burden and to enhance response rates in research studies, patient-reported outcome measures (PROM) need to be as short as possible, without sacrificing reliability and validity. It is also important to have a generic measure that can be used for comparisons across different patient populations. Thus, the aim of this secondary analysis was to evaluate the psychometric properties of the Norwegian 5-item version of the Lee Fatigue Scale (LFS) in two distinct patient populations. METHODS: The sample was obtained from two different Norwegian studies and included patients 4-6 weeks after stroke (n = 322) and patients with osteoarthritis on a waiting list for total knee arthroplasty (n = 203). Fatigue severity was rated by five items from the Norwegian version of the LFS, rating each item on a numeric rating scale from 1 to 10. Rasch analysis was used to evaluate the psychometric properties of the 5-item scale across the two patient samples. RESULTS: Three of the five LFS items ("tired", "fatigued" and "worn out") showed acceptable internal scale validity as they met the set criterion for goodness-of-fit after removal of two items with unacceptable goodness-of-fit to the Rasch model. The 3-item LFS explained 81.6% of the variance, demonstrated acceptable unidimensionality, could separate the fatigue responses into three distinct severity groups and had no differential functioning with regard to disease group. The 3-item version of the LFS had a higher separation index and better internal consistency reliability than the 5-item version. CONCLUSIONS: A 3-item version of the LFS demonstrated acceptable psychometric properties in two distinct samples of patients, suggesting it may be useful as a brief generic measure of fatigue severity. TRIAL REGISTRATION: Clinicaltrials.gov: NCT02338869; registered 10/04/2014 (stroke study).

High pre- and postoperative symptom burden in non-responders to total knee arthroplasty.

OBJECTIVES: One in five patients does not improve in pain with walking (non-responders) 12 months after total knee arthroplasty (TKA). This longitudinal study investigated a broad range of symptoms before and after TKA and evaluated possible differences in symptom distress between responders and non-responders with regards to pain with walking after TKA. METHODS: Prior to TKA surgery, 182 patients completed a demographic questionnaire and the Memorial Symptom Assessment Scale-Short Form (MSAS-SF). The MSAS-SF was repeated 12 months following TKA. Clinical data were extracted from medical records. Patients were categorized as responders or non-responders based on their trajectories of pain with walking assessed prior to surgery, on postoperative day 4, at 6 weeks, and at 3 and 12 months. RESULTS: Overall, the most distressful preoperative symptoms were pain, lack of energy, difficulty sleeping, feeling drowsy, worrying, feeling bloated, and problems with sexual interest or activity. However, compared with patients classified as responders to TKA, non-responders had higher total symptom distress scores both preoperatively and 12 months postoperatively. Preoperatively, non-responders scored higher than responders on five of the seven most distressing symptoms (i.e., all except difficulty sleeping and feeling bloated), and 12 months postoperatively, non-responders scored higher than responders on six of the seven most distressing symptoms (i.e., all but feeling bloated). In a multivariate analysis, higher preoperative distress scores for pain and problems with sexual interest or activity were significant predictors of non-response to TKA, controlling for other relevant factors. CONCLUSIONS: Patients' preoperative symptom burden may be a useful indicator of their risk for non-improvement following TKA surgery. Future studies need to evaluate the effect of reducing patients' preoperative symptom burden on TKA outcomes.

Self-rated global health in the Norwegian general population.

BACKGROUND: Prevalence studies are needed to assess the distribution of diseases. However, in a contrasting health promotion perspective, self-rated health is in itself an important field of study. This study investigated self-rated global health in the general population in Norway. METHODS: As part of a national survey, a two-item measure of global health (score range 0-100) was administered to a general population sample, and 1776 of 4961 eligible participants (response rate 36%) responded. Group comparisons were conducted using independent t-tests and one-way analyses of variance, whereas factors associated with global health was investigated with linear regression analysis. RESULTS: In the adjusted analyses, better global health was associated with higher age (ß = 0.13, p <  0.001), having higher education (ß = 0.10, p <  0.001), being employed (ß = 0.21, p <  0.001), and living with a spouse or partner (ß = 0.05, p <  0.05). CONCLUSIONS: While global health was similar for men and women in the Norwegian general population, other sociodemographic variables were linked with global health. In particular, the link between employment and self-rated global health was strong. The findings are considered representative for the Norwegian population.

General self-efficacy in the Norwegian population: Differences and similarities between sociodemographic groups.

Aims: General self-efficacy (GSE) refers to optimistic self-beliefs of being able to perform and control behaviors, and is linked with various physical and mental health outcomes. Measures of self-efficacy are commonly used in health research with clinical populations, but are less explored in relationship to sociodemographic characteristics in general populations. This study investigated GSE in relation to sociodemographic characteristics in the general population in Norway. Methods: As part of a larger national survey, the GSE scale was administered to a general population sample, and 1787 out of 4961 eligible participants (response rate 36%) completed the scale. Group comparisons were conducted using independent t-tests and one-way analyses of variance. Linear regression analysis was used to examine factors independently associated with GSE. Results: GSE was lower for older compared to younger participants (p < 0.001). It was higher for men compared to women (p < 0.001), higher for those with higher levels of education compared to those with lower levels (p < 0.001) and higher for those in work compared to their counterparts (p < 0.001). Controlling for all variables, male gender and employment were independently associated with higher GSE. Age moderated the associations between gender and employment on one hand, and GSE on the other. The association between being male and having higher GSE was more pronounced in younger age, as was the association between being employed and having higher GSE. Conclusions: Male gender and being employed were related to higher GSE among persons in the general population in Norway, and these associations were stronger among persons of younger age. The findings are considered fairly representative for the Norwegian population.

Self-diagnosed depression in the Norwegian general population - associations with neuroticism, extraversion, optimism, and general self-efficacy.

BACKGROUND: Multi-item rating scales for depression informs about the level of depression, but does not allow individuals to state by self-evaluation whether they feel depressed or not. The insider perspective on depression is rarely assessed. This study investigated the prevalence of self-diagnosed depression in the Norwegian general population, and associations with sociodemographic and psychological factors. METHODS: As part of a national survey, the General Self-Efficacy Scale, the Life Orientation Test-Revised, a short version of the Eysenck Personality Questionnaire and a one-item measure of self-diagnosed depression was administered to 5.500 persons in the general Norwegian population. Of the 4961 eligible participants ≥ 18 years of age, 1.787 (response rate 36%) participated in the survey, and 1.684 of these had valid scores on the relevant scales. The associations between sociodemographic factors and self-diagnosed depression were examined using univariate and multivariate logistic regression analyses. RESULTS: One hundred and thirty-six participants (8.1%) reported depression during the preceding month. When adjusting for sociodemographic and psychological variables, higher age (OR = 0.82), being in work (OR = 0.57), and higher levels of general self-efficacy (OR = 0.67) and optimism (OR = 0.52) were associated with lower risk of self-diagnosed depression, whereas higher levels of neuroticism (OR = 1.97) was associated with higher risk. CONCLUSIONS: The prevalence of self-diagnosed depression in the adult Norwegian population was higher for women than for men. Higher age, being in work and having higher levels of psychological resources appear to reduce the risk of self-diagnosed depression, whereas neuroticism increases the risk.

The last three days of life: a comparison of pain management in the young old and the oldest old hospitalised patients using the Resident Assessment Instrument for Palliative Care.

BACKGROUND: Pain is a common symptom in older patients at the end of life. Little research has evaluated pain management among the oldest hospitalised dying patients. AIMS AND OBJECTIVES: To compare the pain characteristics documented by healthcare workers for the young old and the oldest old hospitalised patients and the types of analgesics administered in the last three days of life. DESIGN: A retrospective cross-sectional comparative study. METHODS: The study included 190 patients from a Norwegian general hospital: 101 young old patients (aged 65-84 years) and 89 oldest old patients (aged 85-100 years). Data were extracted from electronic patient records (EPRs) using the Resident Assessment Instrument for Palliative Care. RESULTS: No significant differences were found between the young old and the oldest old patients with regard to pain characteristics. Pain intensity was poorly recorded in the EPRs. Most of the patients received adequate pain control. Morphine was the most frequently administered analgesic for dying patients. Compared to the oldest old patients, a greater proportion of the young old patients received paracetamol combined with codeine (OR = 3.25, 95% CI 1.02-10.40). CONCLUSIONS: There appeared to be no differences in healthcare workers' documentation of pain characteristics in young old and oldest old patients, but young old patients were more likely to receive paracetamol in combination with codeine. IMPLICATIONS FOR PRACTICE: A limitation of the study is the retrospective design and that data were collected from a single hospital. Therefore, caution should be taken for interpretation of the results. The use of systematic patient-reported assessments in combination with feasible validated tools could contribute to more comprehensive documentation of pain intensity and improved pain control.

Last three days of life in the hospital: a comparison of symptoms, signs and treatments in the young old and the oldest old patients using the Resident assessment instrument for palliative care.

BACKGROUND: Knowledge concerning the provision of end of life care to the oldest old hospitalised patients is deficient. AIMS AND OBJECTIVES: To analyse whether there were differences in registered nurses' documentation of the young old vs. the oldest old patients according to symptoms, clinical signs and treatment in the last 3 days of life. DESIGN: Data were collected retrospectively in a cross-sectional comparative study at a hospital between autumn 2007 and spring 2009. Methods. The study included 190 patients: 101 (65-84 years) and 89 (85+). Data were extracted from the patients' electronic records using the Resident Assessment Instrument for Palliative Care (RAI-PC). RESULTS: Falls (OR = 4.01, 95% CI 1.47-10.90) and peripheral oedema (OR = 2.74, 95% CI 1.06-7.11) were significantly more frequent documented in the oldest old patients compared with the young old patients. Delirium was recorded in 15.3% of all patients. CONCLUSION: With the exception of more falls and peripheral oedema in the oldest old patients, this study showed no differences in symptoms and treatment between the young old and the oldest old patients. Delirium was poorly documented compared to other studies. Implications for practice. The oldest old patients have a higher risk of falls in the final phase of life, and fall prevention should be considered.

Prescribed exercise: a prospective study of health-related quality of life and physical fitness among participants in an officially sponsored municipal physical training program.

BACKGROUND: Participants who completed a 3-month prescribed individualized exercise program in groups were followed-up prospectively. The aims were to describe the characteristics of the participants, their health-related quality of life (HRQoL) and physical fitness at baseline, at completion and at 12-month follow-up, and to identify predictors of HRQoL and physical fitness at completion and at 12-month follow-up. METHODS: A 1-group follow-up design was used. Data were collected from records of 163 attendees at a municipality-sponsored health center in Norway. HRQoL was measured by self-report using the COOP/WONCA questionnaire. Physical fitness was estimated from the results of a 2-km walk test. RESULTS: Of the 163 participants referred to the clinic, 130 (79.8%) were women and 33 were (20.2%) men. Participants who completed were older than those who dropped out. The participants showed clinical improvement in physical fitness and all health-related quality life domains (d > 0.53) at the completion of the program and in physical functioning, mental health, performance of daily activities, overall health, and perceived improved health after 12 months (d > 0.36). CONCLUSIONS: Participation in group-based prescribed exercise program for 3 months may improve physical fitness and HRQoL significantly in short and long terms.

The visitor's regard of their need for support, comfort, information proximity and assurance in the intensive care unit.

PURPOSE: To describe the relationships between demographic variables and the need for support, comfort, information, proximity and assurance amongst the visitors at the intensive care unit (ICU). METHODS: In a cross-sectional correlational design, data were collected from March 2008 to January 2009 at a university hospital in the city of Oslo, Norway. The Critical Care Family Needs Inventory was used to collect data on the participants' perceived need for support, comfort, information, proximity and assurance. One hundred and forty-six questionnaires were given to the visitors of 74 patients, and 62 (42.5%) responded. RESULTS: The bivariate analyses showed that younger visitors regarded their need for comfort, information, proximity and assurance as more important than older visitors. Women reported a need for more comfort than men. Visitors with a lower level of formal education regarded their need for more support and comfort as more important than those with a higher educational level. After controlling for other socio-demographic variables, linear regression analysis showed that low educational level was directly related to greater need for support, comfort and proximity. CONCLUSIONS: Professionals should pay special attention to the needs of younger visitors to the ICU, females and those with a low level of education.

Agreement in documentation of symptoms, clinical signs, and treatment at the end of life: a comparison of data retrieved from nurse interviews and electronic patient records using the Resident Assessment Instrument for Palliative Care.

AIMS AND OBJECTIVES: To assess agreement between data retrieved from interviews with nurses and data from electronic patient records (EPR) about hospitalised patients' symptoms, clinical signs and treatment during the last three days of life. BACKGROUND: Patient records have been used to map symptom prevalence in dying hospitalised patients. However, deficiencies have been found regarding nursing documentation. To our knowledge, this is the first study to assess the agreement between nurse interviews and patient electronic records during the last three days of life in a hospital. DESIGN: This retrospective study was undertaken in a Norwegian hospital. METHOD: We used the resident assessment instrument for palliative care to interview nurses on 112 dying patients, and we independently extracted data from EPR. The agreement between the two data sets was computed with the kappa coefficient. Sensitivity and specificity were calculated. Interview data were used as a reference. RESULTS: The agreement between the two data sets ranged from poor to good and was highest among symptom variables, including pain, dyspnoea, nausea and the clinical sign falls. In contrast, several clinical variables ranged from poor to fair levels of agreement. The majority of the treatment variables ranged from moderate to good levels of agreement. CONCLUSIONS: Data from the EPR on symptoms (e.g., pain, dyspnoea and nausea) and treatment variables appeared to be reliable and trustworthy, but the data related to fatigue, dry mouth, bloating and sleep interfering with normal functioning should be interpreted carefully. RELEVANCE TO CLINICAL PRACTICE: This study contributed to knowledge of agreement between data from nurse interviews and electronic records on symptoms, clinical signs and treatment of dying patients in last three days of life.

Illness and injury presenting to a Norwegian travel insurance company's helpline.

INTRODUCTION: Travel abroad is increasing, yet little attention has been paid to the use of health services by specific groups of travellers. This study describes the prevalence of illness, injury and subsequent changes to homeward bound travel and the costs for a group of Norwegian travellers. METHODS: In 2003, 1787 cases were registered in the data base of the helpline of Norway's largest insurance company. This data were analyzed for prevalence of illness and injury according to age, gender, type of illness or injury, travel destination, type of travel, and the impact on return travel. RESULTS: Illness and injury accounted for 76.2% and 23.8% of the notifications, respectively. Travellers over the age of 60 accounted for 32.3% of the total number of illnesses. The illness reported most frequently was infection (20.3%), with the highest prevalence of infections occurring in Southern and Eastern Europe (10.2%). The results obtained in this study were compared with studies of other populations of European travellers, revealing that infectious diseases are the most prevalent illness. Differences were noted in the incidence of cardiovascular disease and the destinations where this occurred, and of fatality. CONCLUSION: The results of this study when compared with those of other European travellers revealed that sufficient difference occurs. As a consequence pre-departure information needs to target better specific population groups with respect to minimizing the risk of illness and injury. As well, the collection of data by the insurance company misses the opportunity of acquiring data of real value for future travellers, the insurance company and the medical profession. It is argued that there is a need to develop a comprehensive data base of greater use than available currently.

Prevalence and characteristics of chronic pain in the general Norwegian population.

BACKGROUND: Population-based studies suggest that prevalence of chronic pain is increasing. The purpose of this study was to determine the prevalence of chronic pain in a sample drawn from the general Norwegian population. In addition, the characteristics of chronic pain, as well as differences in demographic characteristics and health-related variables between persons with and without chronic pain were evaluated. METHODS: A total of 4000 Norwegian citizens, were randomly drawn from the National Register, by Statistics Norway and were mailed a questionnaire. RESULTS: The response rate was 48.5%. The majority of the sample was female (51%), married (59%), and working for pay (69%) with a mean age of 45.2 years. The prevalence of chronic pain in the total sample was 24.4%, and 65% of the participants with chronic pain indicated that they had experienced chronic pain for over 5 years. The cause of the pain was not specified by 57% of the participants in chronic pain, and 31% reported no pain treatments. Women, older individuals, persons with less education, and those who were pensioned, reported chronic pain more frequently. The results of a logistic regression analysis indicate that the variables that provide unique contributions to predicting pain group memberships were: gender, education, being frequently ill, or having a chronic illness. CONCLUSIONS: These findings suggest that chronic pain is a significant problem in the general Norwegian population, and that gender, education, being frequently ill, or having a chronic illness are important variables in predicting pain group membership.

Hope in the general Norwegian population, measured using the Herth Hope Index.

OBJECTIVE: The aims of this study were to describe hope in a large sample that was drawn from the general Norwegian population and to examine how sociodemographic and health-related variables were related to hope. METHODS: Of 4,000 adult citizens, randomly drawn from the National Register, 1,912 (49%) returned the Norwegian version of the Herth Hope Index (HHI). RESULTS: When demographic and health-related variables were controlled for, age, gender, marital status, and employment status were significantly related to hope. The most important health-related variable was self-assessed health status, with participants who were satisfied with their health reporting significantly higher levels of hope. Participants who indicated that they had a chronic disease reported significantly higher hope scores compared to those without a chronic disease. Older men, individuals who were receiving a pension or were unemployed, and individuals who were widowed or unmarried reported the lowest levels of hope. In this study, an individual's subjective evaluation of his/her health was the most important health-related predictor of hope. SIGNIFICANCE OF THE RESEARCH: The most important health-related variable that predicted hope was self-assessed health in that participants who were satisfied with their health reported higher levels of hope. This finding suggests that an individual's subjective assessment of health is a better predictor of hope than the presence a chronic disease. Knowledge about levels of hope in the general population can be used as reference values against which an individual score or a group mean may be compared.