A multicenter study investigating the molecular fingerprint of psychological resilience in breast cancer patients: study protocol of the SCAN-B resilience study.

BACKGROUND: Individual patients differ in their psychological response when receiving a cancer diagnosis, in this case breast cancer. Given the same disease burden, some patients master the situation well, while others experience a great deal of stress, depression and lowered quality of life. Patients with high psychological resilience are likely to experience fewer stress reactions and better adapt to and manage the life threat and the demanding treatment that follows the diagnosis. If this phenomenon of mastering difficult situations is reflected also in biomolecular processes is not much studied, nor has its capacity for impacting the cancer prognosis been addressed. This project specifically aims, for the first time, to investigate how a breast cancer patient's psychological resilience is coupled to biomolecular parameters using advanced "omics" and, as a secondary aim, whether it relates to prognosis and quality of life one year after diagnosis. METHOD: The study population consists of newly diagnosed breast cancer patients enrolled in the Sweden Cancerome Analysis Network - Breast (SCAN-B) at four hospitals in Sweden. At the time of cancer diagnosis, the patient fills out the standardized method to measure psychological resilience, the "Connor-Davidson Resilience scale" (CD-RISC), the quality of life measure SF-36, as well as providing social and socioeconomic variables. In addition, one blood sample is collected. At the one-year follow-up, the patient will be subjected to the same assessments, and we also collect information regarding smoking, exercise habits, and BMI, as well as patients' trust in the treatment and their satisfaction with the care and treatment. DISCUSSION: This explorative hypothesis-generating project will pave the way for larger validation studies, potentially leading to a standardized method of measuring psychological resilience as an important parameter in cancer care. Revealing the body-mind interaction, in terms of psychological resilience and quality of life, will herald the development of truly personalized psychosocial care and cancer intervention treatment strategies. TRIAL REGISTRATION: This is a retrospectively registered trial at ClinicalTrials.gov, ID: NCT03430492 on February 6, 2018.

Dementia care and service systems - a mapping system tested in nine Swedish municipalities.

BACKGROUND: In dementia care, it is crucial that the chain of care is adapted to the needs of people with dementia and their informal caregivers throughout the course of the disease. Assessing the existing dementia care system with regard to facilities, availability and utilization may provide useful information for ensuring that the professional dementia care and service system meets the needs of patients and their families from disease onset to end of life. METHODS: The aim of this study was to further develop and test a mapping system, and adapt it to a local context. In addition, the aim was to assess availability and utilization of care activities as well as professional providers' educational level in nine municipalities under the categories of Screening, the diagnostic procedures, and treatment; Outpatient care facilities; Institutional care and Palliative care. This cross-sectional study was conducted in April through May 2015. Data was derived from the health care and social service systems in nine rural and urban municipalities in two counties in Sweden. The mapping system covered seven categories with altogether 56 types of health care and social service activities. RESULTS: The mapping system was found to be reliable with minor adaptations to the context mainly in terms of activities. Availability of care activities was common with low utilization regarding Screening, the diagnostic procedures, and treatment; Outpatient care facilities; Institutional care and Palliative care and dementia trained staff was rare. Availability and utilization of care activities and professionals' educational level was higher concerning screening, the diagnostic procedures and treatment compared with outpatient care facilities, institutional care and palliative care. CONCLUSIONS: The mapping system enables policy makers and professionals to assess and develop health care and social service systems, to be offered proactively and on equal terms to people with dementia and their informal caregivers throughout the course of the disease. The educational level of professionals providing care and services may reveal where, in the chain of care, dementia-specific education for professionals, needs to be developed.

Depressive symptomatology and associated factors in dementia in Europe: home care versus long-term care.

BACKGROUND: This study forms part of a larger European programme investigating the transition from home care to long-term care (LTC) facility in people with dementia (PwD) at the margins of LTC. The aim of this study was to explore the factors associated with depressive symptomatology in PwD in different settings. METHODS: A total of 1,538 PwD, of which 957 received home care and 581 lived in a LTC facility, and their carers were interviewed. The Cornell Scale for Depression in Dementia (CSDD) measured depressive symptomatology. PwD completed measures of cognition and quality of life (QoL), and informal or formal carers completed measures on the PwD' QoL, neuropsychiatric behavior, activities of daily living, comorbidities, pain, and falls. Logistic regression was used to assess which factors contributed to depressive symptomatology in the two settings. RESULTS: Those receiving home care, living in Germany, and with severe dementia, showed the highest prevalence of depressive symptomatology. In the home care group, high levels of pain, neuropsychiatric behavior, and comorbidity, as well as low self- and proxy-rated QoL were factors associated with depressive symptomatology. In the LTC group, low proxy-rated QoL, more severe neuropsychiatric behavior, being a male informal carer and living in Germany were associated with depressive symptomatology. CONCLUSIONS: Evidence highlights the need for targeting different aspects in the management of depression in dementia, including offering improved pain management for those living in the community. Further research needs to explore cultural variations and carer gender factors associated with higher levels of depressive symptomatology.

Family caregivers experiences of formal care when caring for persons with dementia through the process of the disease.

BACKGROUND: Family caregivers' experiences of formal care when caring for persons with dementia through the process of the disease is sparsely investigated. AIMS: To investigate family caregivers' experiences of formal care when caring for a person with dementia, through the stages of the disease. DESIGN: A qualitative approach with focus group interviews. METHODS: Four focus group interviews were conducted in October 2011 with 23 spouses and adult children of persons with dementia and analysed with content analysis. RESULTS: The participants' experiences of formal care when caring for a person with dementia were captured in the theme 'Family caregiving requires collaboration with formal care to get support adjusted to needs specific to the stages of dementia'. This can be broken down into the categories 'The dementia diagnosis - entry into formal care as a novice family caregiver', 'Needing expanded collaboration with formal care to continue care at home' and 'Being dependent on a nursing home and trying to maintain involvement'. CONCLUSION: Family caregiving requires collaboration with formal care to get support adjusted to the individual's needs, specific to the stages of dementia. Caregivers experience a transition process with three main turning points: the dementia diagnosis; when they realise increased need for formal care to continue caring at home; and when the person with dementia is moved into a nursing home. The interviewed caregivers experience formal care reactive to their needs and this often promoted unhealthy transitions. Formal care needs to be proactive and deliver available care and support early on in the dementia trajectory. Interventions should focus on facilitating a healthy transition for family caregivers through the trajectory of the dementia disease to ensure their well-being.

Depressive symptomatology in severe dementia in a European sample: prevalence, associated factors and prescription rate of antidepressants.

BACKGROUND: Depression is a common comorbid disorder of dementia. This study explores the prevalence of and factors associated with depressive symptomatology, and antidepressant prescription rates in severe dementia across eight European countries. METHODS: In total, 414 people with severe dementia completed measures of cognition and quality of life (QoL), whilst carers completed proxy measures of activities of daily living (ADLs), depression, neuropsychiatric symptoms, QoL and comorbidity. RESULTS: Findings indicated that 30% of the sample had depression, whilst the highest and lowest prevalence of depression was reported in Germany and Finland, respectively. Lower QoL, the presence of pain and more frequent neuropsychiatric symptoms were associated with depressive symptomatology, whilst no significant relationship between impairment of ADLs, comorbidity, and depression emerged. Spain and Estonia had the highest and lowest rates of antidepressant prescribing, respectively, whilst Germany had the highest discrepancy between depressive symptomatology and prescription. CONCLUSIONS: The study highlights variations across countries in the prevalence of depressive symptomatology in severe dementia and prescription of antidepressants. Information about factors associated with depressive symptomatology may help to better identify and manage depression.

Best practice and needs for improvement in the chain of care for persons with dementia in Sweden: a qualitative study based on focus group interviews.

BACKGROUND: Persons with dementia receive health care and social services from a wide range of professional care providers during the disease trajectory, presenting risks of miscommunication, duplication and/or missed nursing interventions. Accordingly, the aim of this study was to investigate professional care providers' views on conditions for best practice in terms of collaboration and improvement needs in the chain of care from early to end-of-life stage for persons with dementia in Sweden. METHODS: The study had a qualitative design based on three focus group interviews. A strategic sample of 23 professional care providers was included. Data were subjected to content analysis based on the three stages of dementia (early, moderate, end-of-life). RESULTS: The results were divided into five categories: Diagnosis is a prerequisite for specialized dementia care, Creating routines in the chain of care, Competent staff a prerequisite for high-quality care, Day care facilitates transition in the chain of care and Next-of-kin participation is a prerequisite for continuity in the chain of care. It was clear that, according to the participants, best practice in dementia care in Sweden is not achieved in every respect. It appeared that transitions of care between different organizations are critical events which need to be improved. The further the disease progresses, the less collaboration there seems to be among professional care providers, which is when the next of kin are usually called upon to maintain continuity in the chain of care. CONCLUSIONS: The results indicate that, according to the care providers, best practice in terms of collaboration is achieved to a higher degree during the early stage of dementia compared with the moderate and end-of-life stages. Lack of best practice strategies during these stages makes it difficult to meet the needs of persons with dementia and reduce the burden for next of kin. These are experiences to be taken into account to improve the quality of dementia care. Implementation research is needed to develop strategies for best practice on the basis of national knowledge-based guidelines and to apply these strategies in the moderate and end-of-life stages.

Sense of coherence among cognitively intact nursing home residents--a five-year longitudinal study.

AIM AND OBJECTIVES: To examine how stable the sense of coherence (SOC) is over a five-year period among residents of nursing homes (NH) who are not cognitively impaired and whether components of social support influence SOC. BACKGROUND: Many studies have investigated the stability of SOC, and the findings have been inconsistent. Social support is a crucial resource in developing SOC. Few researchers have studied the stability of SOC and how various social support dimensions influence changes in SOC among older NH residents who are cognitively intact. DESIGN: The study was prospective and included baseline assessment and five-year follow-up. METHODS: The sample comprised 52 cognitively intact NH residents (Clinical Dementia Rating score ≤0.5). We obtained data through direct interviews using the Social Provisions Scale and Sense of Coherence Scale. RESULTS: SOC increased statistically significantly from baseline to follow-up. The social support subdimension reassurance of worth predicted change in SOC after adjustment for sociodemographic factors. When controlled for baseline SOC, attachment was associated with change in SOC, but reassurance of worth was not. CONCLUSIONS: The study indicates that the change in SOC over time during the 5 years of follow-up and the social support dimension attachment appear to be important components of change in SOC. Nursing personnel should be aware of the residents' individual needs for attachment and the importance of emotional support for personal strength and ability to cope.

Psychometric properties of the Chinese version of Sense of Coherence Scale in women with cervical cancer.

PURPOSE: The purpose of this study was to test the psychometric properties of a Chinese version of the Sense of Coherence Scale (C-SOC-13) in women with cervical cancer in Mainland China. METHODS: The C-SOC-13 and Health-related Quality of Life scale (Functional Assessment of Cancer Therapy-Cervix) were administered to 238 women with cervical cancer. Validity was assessed in terms of factor validity, predictive validity, divergent validity and stability, whereas reliability was evaluated using Cronbach's alpha coefficient. RESULTS: This study showed that in confirmatory factor analysis, the first-order interrelated three-factor model and second-order model were performed based on Antonovsky's theoretical structure of Sense of Coherence (SOC). Both models fitted the data satisfactorily when the largest modification index was released. The chi-square value/degrees of freedom was 2.120, the goodness-of-fit index was 0.919, the root mean square error of approximation was 0.069, and the comparative fit index was 0.911. The Pearson correlation coefficient between SOC and Functional Assessment of Cancer Therapy-Cervix was 0.611. Enter multiple regression with SOC as a dependent variable and medical and socio-economic variables as independent variables showed no statistically significant partial coefficient of any independent variable in regression equation except for age. The Cronbach's alpha coefficient for the scale was 0.824. CONCLUSION: The factor validity, predictive validity and divergent validity of C-SOC-13 were reasonable, as well as the internal consistency. In general, C-SOC-13 showed to be suitable as an SOC measurement for women with cervical cancer in Mainland China. However, SOC may have a different meaning to Chinese people because of the philosophy and culture that shape the context of their lives. Generalizing the findings to other populations requires further psychometric evaluation of C-SOC-13. Further longitudinal studies are also needed to explore the stability.

A European study investigating patterns of transition from home care towards institutional dementia care: the protocol of a RightTimePlaceCare study.

BACKGROUND: Health care policies in many countries aim to enable people with dementia to live in their own homes as long as possible. However, at some point during the disease the needs of a significant number of people with dementia cannot be appropriately met at home and institutional care is required. Evidence as to best practice strategies enabling people with dementia to live at home as long as possible and also identifying the right time to trigger admission to a long-term nursing care facility is therefore urgently required. The current paper presents the rationale and methods of a study generating primary data for best-practice development in the transition from home towards institutional nursing care for people with dementia and their informal caregivers. The study has two main objectives: 1) investigate country-specific factors influencing institutionalization and 2) investigate the circumstances of people with dementia and their informal caregivers in eight European countries. Additionally, data for economic evaluation purposes are being collected. METHODS/DESIGN: This paper describes a prospective study, conducted in eight European countries (Estonia, Finland, France, Germany, Netherlands, Sweden, Spain, United Kingdom). A baseline assessment and follow-up measurement after 3 months will be performed. Two groups of people with dementia and their informal caregivers will be included: 1) newly admitted to institutional long-term nursing care facilities; and 2) receiving professional long-term home care, and being at risk for institutionalization. Data will be collected on outcomes for people with dementia (e.g. quality of life, quality of care), informal caregivers (e.g. caregiver burden, quality of life) and costs (e.g. resource utilization). Statistical analyses consist of descriptive and multivariate regression techniques and cross-country comparisons. DISCUSSION: The current study, which is part of a large European project 'RightTimePlaceCare', generates primary data on outcomes and costs of long-term nursing care for people with dementia and their informal caregivers, specifically focusing on the transition from home towards institutional care. Together with data collected in three other work packages, knowledge gathered in this study will be used to inform and empower patients, professionals, policy and related decision makers to manage and improve health and social dementia care services.

Thresholds for minimum data set quality indicators developed and applied in icelandic nursing homes.

A modified Delphi method was used to determine thresholds for Minimum Data Set quality indicators for Icelandic nursing homes. The thresholds were then applied to quality outcomes in Icelandic nursing homes for the year 2009. The thresholds indicate areas of good or poor care and can be used for planning services. Icelandic nursing homes seem to be doing best in incontinence and nutritional care. However, improvement is needed in care practices for depression, medication, and activity.

One-year recovery from breast cancer: Importance of tumor and treatment-related factors, resilience, and sociodemographic factors for health-related quality of life.

Aim: This study investigated the changes in health-related quality of life from diagnosis to 1 year after diagnosis in breast cancer (BC) patients and the influence of clinical, psychological, and sociodemographic variables. An additional aim was to explore the mediating and moderating effects of resilience on changes in health-related quality of life. Methods: A longitudinal population-based study was conducted in southern Sweden. Newly diagnosed BC patients filled in measures of health-related quality of life, resilience, and sociodemographic variables at diagnosis (N = 980) and 1 year post-diagnosis (N = 780). Clinical variables were extracted from the Swedish national breast cancer quality registry. Mixed-model analyses were performed. Results: Most health-related quality of life outcomes declined from diagnosis to 1 year post-diagnosis. Role limitations due to emotional problems remained the same, whereas mental health improved. Lower health-related quality of life outcomes were associated with symptomatic detection and axillary dissection. Patients with a higher TNM stage and histologic grade and estrogen receptor (ER)-negative and human epidermal growth factor 2 (HER2)-positive status, who received chemotherapy, antibody therapy, or bisphosphonate therapy, had a steeper decline in outcomes. Changes in resilience were positively associated with all outcomes but did not mediate or moderate changes in any. Resilience at baseline moderated changes in bodily pain, vitality, and mental health, with higher baseline resilience being associated with a steeper decline, possibly due to floor or ceiling effects. Patients with lower socioeconomic status, educational level, and older age had a lower health-related quality of life. Conclusion: Physical health-related quality of life among breast cancer patients declined 1 year post-diagnosis, whereas mental health-related quality of life improved. Low resilient patients may be especially vulnerable at diagnosis. Biopsychosocial assessment at diagnosis can help identify patients who may require additional support. A multidimensional treatment plan should be started early to help overcome the problems in everyday activities.

Predicting mortality of residents at admission to nursing home: a longitudinal cohort study.

BACKGROUND: An increasing numbers of deaths occur in nursing homes. Knowledge of the course of development over the years in death rates and predictors of mortality is important for officials responsible for organizing care to be able to ensure that staff is knowledgeable in the areas of care needed. The aim of this study was to investigate the time from residents' admission to Icelandic nursing homes to death and the predictive power of demographic variables, health status (health stability, pain, depression and cognitive performance) and functional profile (ADL and social engagement) for 3-year mortality in yearly cohorts from 1996-2006. METHODS: The samples consisted of residents (N = 2206) admitted to nursing homes in Iceland in 1996-2006, who were assessed once at baseline with a Minimum Data Set (MDS) within 90 days of their admittance to the nursing home. The follow-up time for survival of each cohort was 36 months from admission. Based on Kaplan-Meier analysis (log rank test) and non-parametric correlation analyses (Spearman's rho), variables associated with survival time with a p-value < 0.05 were entered into a multivariate Cox regression model. RESULTS: The median survival time was 31 months, and no significant difference was detected in the mortality rate between cohorts. Age, gender (HR 1.52), place admitted from (HR 1.27), ADL functioning (HR 1.33-1.80), health stability (HR 1.61-16.12) and ability to engage in social activities (HR 1.51-1.65) were significant predictors of mortality. A total of 28.8% of residents died within a year, 43.4% within two years and 53.1% of the residents died within 3 years. CONCLUSION: It is noteworthy that despite financial constraints, the mortality rate did not change over the study period. Health stability was a strong predictor of mortality, in addition to ADL performance. Considering these variables is thus valuable when deciding on the type of service an elderly person needs. The mortality rate showed that more than 50% died within 3 years, and almost a third of the residents may have needed palliative care within a year of admission. Considering the short survival time from admission, it seems relevant that staff is trained in providing palliative care as much as restorative care.

Electric versus manual tooth brushing among neuroscience ICU patients: is it safe?

BACKGROUND: Poor oral hygiene has been associated with ventilator-acquired pneumonia. Yet providing oral care for intubated patients is problematic. Furthermore, concerns that oral care could raise intracranial pressure (ICP) may cause nurses to use foam swabs to provide oral hygiene rather than tooth brushing as recommended by the American Association of Critical-Care Nurses. Evidence is needed to support the safety of toothbrushing during oral care. We therefore evaluated ICP and cerebral perfusion pressure (CPP) during oral care with a manual or electric toothbrush in intubated patients in a neuroscience intensive care unit (ICU). METHODS: As part of a larger 2-year, prospective, randomized clinical trial, 47 adult neuroscience ICU patients with an ICP monitor received oral care with a manual or electric toothbrush. ICP and CPP were recorded before, during, and after oral care over the first 72 h of admission. RESULTS: Groups did not differ significantly in age, gender, or severity of injury. Of 807 ICP and CPP measurements obtained before, during, and after oral care, there were no significant differences in ICP (P = 0.72) or CPP (P = 0.68) between toothbrush methods. Analysis of pooled data from both groups revealed a significant difference across the three time points (Wilks' lambda, 12.56; P < 0.001; partial η(2), 0.36). ICP increased significantly (mean difference, 1.7 mm Hg) from before to during oral care (P = 0.001) and decreased significantly (mean difference, 2.1 mm Hg) from during to after oral care (P < 0.001). CONCLUSIONS: In the absence of preexisting intracranial hypertension during oral care, tooth brushing, regardless of method, was safely performed in intubated neuroscience ICU patients.

Care managers' view of family influence on needs assessment of older people.

Research has shown that families experience poor involvement in needs assessment of older people while little is known about municipal care managers' views of family participation. The aim was to explore how municipal care managers view families' participation in and influence on needs assessment of older people receiving public home help. Individual interviews (n=26) were conducted with care managers (n=5) about their previously conducted needs assessments (n=5-6). As a complement, a focus group interview with care managers (n=9) from nine different municipalities was conducted. All interviews were analysed using a qualitative content analysis. The results revealed the overarching category, 'Having to establish boundaries towards family influence and at the same time use them as a resource', which encompassed five principal categories. How family participation was viewed and handled during the needs assessment process seemed determined by the way care managers set boundaries for their professional responsibility. Their views revealed both distancing and strengthening attitudes. The distancing attitude dominated, in particular towards family members who were not perceived as having any legal rights to be considered, even though their participation was an important resource. To follow legislation and municipal guidelines of allocation of public home help to avoid reprimands caused a need for self-protection. The care managers seemed pressed by demands from organizations and families, and in this competition, the family lost out. Adherence to organizational developed patterns of handling legislation and guidelines were prioritized. Because family members often are older and assist in providing care, family participation in the needs assessment of older help recipients needs further societal support.

Psychological Resilience and Health-Related Quality of Life in 418 Swedish Women with Primary Breast Cancer: Results from a Prospective Longitudinal Study.

Psychological resilience is considered a major protective psychological mechanism that enables a person to successfully handle significant adversities, e.g., a cancer diagnosis. Higher levels of resilience have been associated with higher levels of health-related quality of life (HRQoL) in breast cancer (BC) patients, but research examining the longitudinal process of resilience is limited. The aim of this population-based longitudinal study was to investigate resilience and HRQoL from diagnosis to one year later in 418 Swedish women with primary BC. Resilience was measured with the Connor-Davidson Resilience Scale 25, and HRQoL was measured with the Short Form Health Survey. The participants responded to questions regarding demographic and study-specific variables. Clinicopathological variables were collected from the Swedish National Quality Register for Breast Cancer. The mean score for resilience was 70.6 (standard deviation, SD = 13.0) at diagnosis and 68.9 (SD = 14.0) one year later, p < 0.001. The level of trust in the treatment and financial situation demonstrated the greatest association with the change in resilience levels. No oncological treatment modality was associated with a change in resilience levels. HRQoL decreased over time in the cohort. Resilience was positively associated with HRQoL at one year post diagnosis, which demonstrates that resilience is an important factor in maintaining HRQoL.

Healthcare utilisation and knowledge concerning prescribed drugs among older people.

PURPOSE: The aim of this study was to explore healthcare consumption in relation to more versus less knowledge concerning prescribed drugs among older people with functional dependency and repeated healthcare contacts, and to explore the determinants of more versus less knowledge METHODS: The sample comprised 63 persons (mean age 82.8 years). Data concerning use and knowledge about drugs, demographics, health complaints and self-reported diseases were collected from the baseline measure in an ongoing randomised controlled trial (RCT) and merged with data from two public registers about healthcare consumption 2 years prior to baseline measurement. Data were analysed descriptively and using regression analysis. RESULTS: Fifty-two percent of the sample (n = 33) had less knowledge (defined as not knowing the indications for 50% or less of their prescribed drugs) and these had more acute hospitals stays (median 2 vs 0), more total hospital stays (median 2 vs 1) and more bed days in hospital (median 18 vs 3) than those with more knowledge. Bed days and visits to other outpatient staff groups were associated with less knowledge; visits to physicians were associated with more knowledge. CONCLUSIONS: The healthcare consumption pattern of those with less knowledge differed from that of those with more knowledge in terms of more acute inpatient care. The results indicate that there is a need for the health system to create mechanisms to ensure that patients do not lose their knowledge about their drugs when admitted in an acute situation; there is also an apparent need for educational intervention with patients, starting at the time of admission.

Satisfaction with care in oncology outpatient clinics: psychometric characteristics of the Icelandic EORTC IN-PATSAT32 version.

AIM AND OBJECTIVES: To assess the psychometric characteristics of the Icelandic European Organisation for Research and Treatment of Cancer IN-PATSAT32 (EORTC IN-PATSAT32) version and to compare satisfaction with care between gender and different age groups. BACKGROUND: The majority of patients with cancer receive either chemotherapy or radiotherapy on an outpatient basis. There is a need to evaluate satisfaction with care and service for these patients using reliable and valid instruments. DESIGN: Cross-sectional comparative study. METHOD: Participants (n=217) who received treatment for cancer as outpatients answered the EORTC IN-PATSAT32 questionnaire. Participants were 22-91 years old and 57% of them were female. RESULTS: Overall high satisfaction was found with communication, information and care that patients receive from doctors and nurses. Principal component analysis extracted four factors: 'satisfaction with nurses' conduct', 'satisfaction with doctors' conduct', 'satisfaction with information' and 'satisfaction with service and care organisation'. Patients were most satisfied with nurses' conduct but least satisfied with service and care organisation. Cronbach's alpha for the four factors ranged from 0·95-0·67. CONCLUSION: Although the validity of this instrument including its sensitivity to patients' level of dissatisfaction as well as satisfaction with care and service was evident, this needs to be further explored in future studies. The psychometric strengths of the EORTC IN-PATSAT32 are its internal consistency and its construct validity, but there are several issues indicating a need to change and develop the instrument and specifically adopting it to outpatient care. RELEVANCE TO CLINICAL PRACTICE: Outpatient treatment options offered to cancer patients have increased, and this calls for knowledge of their satisfaction with care and service. Sparse studies are available, and there is a need for further development of reliable instruments. Our study indicates that outpatients with cancer are quite satisfied with the care they receive. Findings may contribute to improvement in outpatients' clinics that provide treatment to patients with cancer.

Utilization of medical healthcare among people receiving long-term care at home or in special accommodation.

AIM: To investigate the utilization of medical healthcare, hospital care and outpatient care, during a 1-year period in relation to informal care, multimorbidity, functional status and health complaints and to long-term care at home or in special accommodation among people aged 65+, with one or more hospital admissions and receiving long-term care. METHOD: A total of 694 people receiving long-term care during the year 2001 were studied. Data were collected by means of the administrative registers Patient Administrative Support in Skåne and PrivaStat and through the study Good Ageing in Skåne. Those at home and those in special accommodation were compared regarding utilization of medical healthcare, informal care, multimorbidity, functional status and health complaints. Multiple logistic regression analysis was performed using at home vs. in special accommodation as the dependent variable and also two multiple linear regression analyses using the number of hospital stays and the number of contacts with the physician in outpatient care separately as dependent variables. FINDINGS: Those at home were significantly younger (mean age: 81 vs. 84 years) and less dependent in personal and instrumental activities of daily living (PADL/IADL) than those in special accommodation. A larger proportion of those at home was admitted to hospital three times or more (21 vs. 14%) and they had significantly more contacts with physicians in outpatient care (md: 10 vs. md: 7). Informal care was associated with care at home (OR = 0.074) and with utilization of outpatient care (B = 2.045). Dependency in PADL was associated with care in special accommodation (OR = 1.375) and with utilization of hospital care (B = -0.060) and outpatient care (B = -0.581). CONCLUSION: Medical healthcare seems more accessible to those who live at home are younger, less dependent and who have access to informal caregivers.

Frail older adult's experiences of receiving health care and social services.

This study explored frail older adults' overall experience of receiving health care and/or social services. Frail older adults with unstable health are dependent on the health care system because of the frequency of their contacts with it. More knowledge is needed about how they experience the health care and social services they receive. Interviews with 14 older adults (mean age = 81) revealed one main category, Having Power or Being Powerless, that incorporated three categories: Autonomous or Without Control in Relation to the Health Care and/or Social Services System, Being Confirmed or Violated in Relation to Caregivers, and Paradoxes in Health Care or Social Services. Each category comprised subcategories reflecting aspects of having power or being powerless. The findings indicate it is important for health care and social services to ensure a high level of interpersonal continuity to empower frail older adults. This may contribute to more relationship-based care and help older adults remain in control of their life situations.

Frail elderly patients in primary care--their medication knowledge and beliefs about prescribed medicines.

PURPOSE: The aim of this study was to describe elderly patients' knowledge about and attitudes towards their medicines in Swedish primary care. METHODS: Thirty-four patients aged 65 years and above with multiple illnesses were included. Medication knowledge was assessed with a questionnaire measuring knowledge about indication and possible adverse effects for each medicine. Attitudes were investigated with the Beliefs about Medicines Questionnaire. RESULTS: The indication of at least 75% of their medicines was known to 71% of the patients. Patients with polypharmacy and multi-dose drug distribution respectively had significantly less knowledge. Eighty-four percent had no knowledge about possible adverse effects. For 93% of the patients, the benefits of the medication outweighed the costs (concerns). No correlation was found between attitudes and knowledge. CONCLUSIONS: The knowledge about indication was higher than previously seen, but the knowledge about possible adverse effects was poor. The patients had strong beliefs in the benefits of their medication.