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.

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.

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.

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.

Chinese women living with cervical cancer in the first 3 months after diagnosis: a qualitative study.

BACKGROUND: An earlier study revealed that Mainland Chinese women experienced a relatively low health-related quality of life during the first 3 months after being diagnosed with cervical cancer. This merited conducting a qualitative study to explore their experiences during this period. OBJECTIVE: The aim of this study was to describe the experiences of Chinese women with cervical cancer in the first 3 months after diagnosis. METHODS: A descriptive phenomenological method was used. Fourteen participants were interviewed at the time of diagnosis and 10 were reinterviewed 3 months later. The number of interviews conducted was determined by data saturation. RESULTS: Five themes were discerned: dealing with the emotional chaos down to the hassles caused by the disease and its treatment, handling the diagnosis and the disease in my own way and in accordance with Chinese culture, instinctively depending on my partner and experiencing improved relationships within the family but no sexual life, sharing information and support with fellow patients but hiding the diagnosis from friends and acquaintances, and returning to previous existence wanting to be treated as normal but with changed attitudes to life. CONCLUSIONS: The lived experience was seen as a sudden life transition triggered by receiving the diagnosis. Cultural and societal contexts influenced patient adaptation to the situation. IMPLICATIONS FOR PRACTICE: Family members and fellow patients could be mobilized to help patients since their support was highly valued. Regarding their hope for an ordinary life, patients could benefit from the relief of adverse effects and information, for instance, on how to resume sexual activity.

Health-related quality of life and associated factors in Chinese women with cervical cancer: a 9-month follow-up.

BACKGROUND: There is a lack of health-related quality of life (HRQOL) studies in Chinese women with cervical cancer. OBJECTIVE: The objectives of this study were to investigate the HRQOL trajectory in women with cervical cancer in Mainland China in the 9 months following diagnosis and to identify factors that influence HRQOL. METHODS: Initially, 187 patients with cervical cancer were included in the study, but at each follow-up, the number declined to 128, 112, and 106, respectively. The Functional Assessment of Cancer Therapy-Cervix (FACT-Cx) was used to collect data sequentially at the time of diagnosis (T1) and at 3 (T2), 6 (T3), and 9 months after diagnosis (T4). Medical characteristics, sense of coherence, and social support were included as factors likely to contribute to HRQOL. RESULTS: Functional Assessment of Cancer Therapy-Cervix ranged in mean from 120.30 at T1 to 126.22 at T4 (P = .001), whereas social/family well-being ranged from 23.56 at T1 to 20.23 at T4 (P = .025). In the stepwise regression with FACT-Cx as the independent variable, sense of coherence entered the equation with the highest standardized coefficients (0.554) at T1 and stage II at T2 and T3 (-0.53 and -0.26, respectively). Satisfaction with family relationships had the second highest standardized coefficient (-0.21) at T3. CONCLUSIONS: Overall HRQOL improved, although social/family well-being deteriorated. Sense of coherence contributed to HRQOL initially, whereas disease stage and family support did so later on. IMPLICATIONS FOR PRACTICE: The study highlights the importance of identifying those with a low sense of coherence at the time of diagnosis. Family members should be included in caring process as a vital source of social support.

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.

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.

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.

Functional ability and health complaints among older people with a combination of public and informal care vs. public care only.

The aim of the study was to investigate functional ability and health complaints of people, 65+, living in special accommodation (equivalent to nursing home) and their counterparts who live at home and receive municipal care or a combination of municipal and informal care. Persons (n = 1958) receiving municipal care were assessed in terms of functional ability, health complaints, and level of informal and municipal care and services. The results showed that more home care, services and help with Instrumental Activities of Daily Living (IADL) were provided to those receiving only municipal care at home, while more home care and services associated with Personal Activities of Daily Living (PADL) as well as nursing care were provided to those receiving informal care in addition to formal care. Cohabitation was a predictor of a combination of municipal and informal care in the home (OR: 5.935), while assistance with IADL provided by municipal home care and services predicted municipal care only (OR: 0.344). Care in special accommodation was predicted by advanced age (OR: 1.051), dependency in IADL (OR: 19.883) and PADL (OR: 2.695), and impaired cognitive ability (OR: 3.849) with receiving municipal care only as a reference. Living alone (OR: 0.106), dependency in IADL (OR: 11.348) and PADL (OR: 2.506), impaired cognitive ability (OR: 3.448), impaired vision or blindness (OR: 1.812) and the absence of slowly healing wounds (OR: 0.407) were predictors of special accommodation with a combination of informal and municipal care at home as a reference. The distribution of municipal care divided older people into three distinct groups. The most frail and elderly people who had no cohabitants received care in special accommodation, determined by their level of physical and cognitive dependency. The frailest individuals living at home were cohabiting and received a combination of municipal and informal care, while those who were less dependent mainly had help with IADL from municipal care only. The results indicate that there is a shift from the substitution to the complementary model and highlights that attention to the family carers is needed.

Living with cancer and perception of care: Icelandic oncology outpatients, a qualitative study.

AIM: This qualitative study was set out to explore oncology outpatient experiences of having cancer, to illuminate coping strategies and to explore perceptions of care and service provided while treated for cancer. MATERIALS AND METHODS: Thirty patients undergoing chemotherapy or radiotherapy were consecutively selected for the study in three oncology outpatient clinics in Iceland; mean age was 55 years. All participants gave written consent but five dropped out of the study. Twenty-five semi-structured single interviews were conducted and analysed using manifest and latent content analysis. RESULTS: The descriptive level of the text could be understood as: (a) getting cancer: alarming experience; (b) coping: balancing life as it was before cancer against present situation to achieve normality; (c) satisfaction: encountering caring behaviour enhances satisfaction and well being. Each of the categories encompassed variation of subcategories. All the categories were summarised in the core category: "Being in the alarming situation of getting cancer evokes a strong need to maintain normality and keep uncertainty at distance with support from caring and sensitive encounters." This reflected patients' overall experiences of being diagnosed with cancer, how they coped and their perception of quality of care while going through treatment. CONCLUSION: Reactions to the diagnosis of cancer indicate strong emotional reactions. A strong will to handle the situation and determination to maintain normality in life was prominent. Establishment of positive patient-health care professional relationships, caring encounters, faith, believing in treatment and support from family was highly valued as support and giving hope.

Being given a cancer diagnosis in old age: a phenomenological study.

OBJECTIVES: The aim of the study was to illuminate the lived experience of being given a cancer diagnosis in old age. BACKGROUND: Little research has been done on the experience of elderly people developing cancer and the impact of the illness on their lives. Such knowledge is needed to support elderly people in dealing with issues arising after cancer is diagnosed. DESIGN: A descriptive phenomenological method was used to investigate the phenomenon "the lived experience of being given a cancer diagnosis in old age". PARTICIPANTS: In total, 16 persons (aged 65+, mean age 76, range 68-83) with cancer were interviewed, all referred to the same oncology outpatient clinic in Copenhagen County. METHOD: Open-ended interviews were used to get a clear understanding of the experience of a cancer diagnosis in old age. Giorgi's phenomenological analysis was used. FINDINGS: The findings showed that the essential meaning of the lived experience was "Illness as a turning point marking old age". This main essence was represented overall by three essences: "Illness means losing control", "Disturbing the family balance" and "Life and death suddenly apparent". These three essences were manifested through seven constituents: growing old in the context of illness, becoming a patient with cancer, everyday life being controlled by bodily limitations, managing family reactions, becoming conscious about dying and death through illness experience and retaining hope, and enjoying life. CONCLUSION: It is important in clinical practice, to identify the specific meaning the turning point has for an elderly person with cancer, and to understand the particular approach he or she uses to handle the awareness of being old.

Healthcare costs for people aged 65+ two years prior to their receiving long-term municipal care.

BACKGROUND AND AIMS: More knowledge is needed about patterns of healthcare consumption at different times during old age, particularly with regard to the relationship between various agents in the healthcare and social services system. One aim was to investigate healthcare costs in the public medical healthcare system in men and women (65+) and, with regard to age, in the two years prior to the start of long-term municipal care and services. Another aim was to investigate patterns and determinants of costs. METHODS: The study comprised 362 people who received decisions about municipal care and/or services during 2002-2003, and data were derived from the Swedish National Study of Aging and Care (SNAC) and county councils registers about healthcare consumption. SNAC provided data concerning demographics, functional dependency and informal care at the time of the decision, which were merged with data from the Skåne County Council patient administrative system regarding costs in the two years prior to decision. RESULTS: Cluster analysis revealed 13% overall higher healthcare costs. Those involved were more often younger, men, married, and diagnosed with circulatory diseases, cancer, or injuries. Most (58% for women, 54% for men) of the costs for acute inpatient care occurred within five months prior to municipal care. Men had significantly higher costs compared with women for visits to outpatient physicians (EUR 700 vs 400) and inpatient care (EUR 4700 vs 700) 12-0 months prior to municipal care. CONCLUSIONS: A share of 13% had higher healthcare costs throughout the two years. Those involved were more often younger, men, married, and diagnosed with circulatory diseases, cancer, or injuries. Those older people at risk of high healthcare costs should benefit from systematic clinical assessments and more proactive and integrated care, to prevent escalating costs in the period preceding long-term municipal care and services.

Healthcare consumption in men and women aged 65 and above in the two years preceding decision about long-term municipal care.

The aim was to investigate healthcare consumption in men and women aged 65 and above in the two years preceding decision about long-term municipal care at home or in special accommodation and to investigate determinants for healthcare consumption. The study comprised 362 people (aged 65 or over), all subject to a decision about municipal care and/or services during 2002-2003, drawn from the Swedish National Study on Aging and Care (SNAC). Data were collected from three existing registers, the SNAC data covered age, gender, marital status, functional ability, informal care and living conditions and were merged with the Skåne County Council's patient administration system PASiS and PrivaStat covering healthcare consumption from the year 2000 and forward. About 50% of the acute hospital stays (n = 392) occurred within 5 months prior to municipal care. The men (n = 115, mean age 80.8) had significantly longer stays in hospital (P = 0.025), more diagnoses (P = 0.004) and contacts with other staff groups beside physicians in outpatient care (P < 0.001) compared to the women (n = 247, mean age 83.8). The regression analysis showed heart conditions, cancer, musculoskeletal problems, genitourinary diseases, injuries and unspecified symptoms to be significantly associated with various kinds of healthcare consumption. The findings indicated a breakpoint in terms of hospital admissions about 5 months prior to municipal care and service and a share of 15% having several admissions to hospital. Early detection and preventive interventions to these people in a transitional stage of becoming increasingly dependent on continuous care and services seems urgent to prevent escalating acute healthcare consumption.

Quality of life of elderly persons with cancer: a 6-month follow-up.

The aim of this study was to investigate possible changes in quality of life (QoL) in elderly persons diagnosed with cancer (65 years and above), in relation to age, contact with the health-care system, activities of daily living, hope, social network and support. The investigation points were at time of diagnosis (baseline), and again 3 and 6 months after the diagnosis. The study also aimed to investigate which of the aforementioned factors predicted deteriorated QoL in elderly persons with cancer from baseline to the 6-month investigation. At baseline, the sample consisted of 101 individuals aged (age 65+) recently diagnosed with cancer (74 women, 27 men), but was reduced to 75 (57 women, 18 men) by the 6-month investigation point. EORTC QLQ C30, Katz ADL, Nowotny's Hope Scale and Interview Schedule for Social Interaction were used in structured personal interviews and questionnaires. Emotional function improved significantly over time, and complaints of nausea and vomiting decreased. Contact with a district nurse at baseline predicted deteriorated QoL from baseline to 6 months later. Support from grandchildren increased significantly. About 30% of the total sample deteriorated in QoL, by the significant >/=10 units, from baseline to 6-month follow-up, while about 70% remained stable in QoL from baseline. The majority of the elderly persons with cancer showed an ability to adjust to the new condition. However, in clinical practice, specific attention should be paid to the most vulnerable groups of elderly persons with cancer: those with advanced disease and decreased hope, and those with increased need of both informal and formal assistance.

Palliative care as a framework for older people's long-term care.

This article draws on the findings from several years of research on the health problems, quality of life and care of older people, especially during the later years of life, and argues that there is a need to develop and provide care according to the principles of palliative care. The findings indicate that palliative care, including a focus on symptom management, psychosocial and existential issues, may be appropriate for the long-term care of older or very old people - not just those at the very end of life. However, the way that palliative care is provided to older people at the very end of life needs to be adjusted. It should be adapted to the situation that accompanies advanced age and having lived a long life. It should recognize that symptom management ought to address clusters of health complaints rather than isolated symptoms, bodily changes and how they are perceived. Palliative care for older people should also take into consideration the importance of the social network as well as common fears of dying and the very essence of death, and fear of being separated from one's loved ones and the activities valued in life.

Quality of life of elderly persons with cancer: a 3-month follow-up.

We investigated the quality of life (QoL) of newly diagnosed persons with cancer aged 65 years at baseline and 3 months after, in relation to age, contact with the healthcare system, activities of daily living, hope, social network and support using the European Organization for Research and Treatment of Cancer QLQ-C30, Katz ADL, Nowotny's Hope Scale, and the Interview Schedule for Social Interaction. Participation at baseline was 101 (74 women, 27 men), and after 3 months was 85(66 women, 19 men). Fatigue was the most reported symptom both at baseline and 3 months after. No significant changes were found in QoL from baseline to 3 months after, whereas perceived social network and 2 subscales ("confidence" and "comes from within") in Nowotny's Hope Scale deteriorated significantly. Dependency, reduced economic ability, and low level of hope were significantly associated with low QoL at the 3-month follow-up. From the perspective of QoL, nurses need to address more specifically the most vulnerable elderly cancer patients: those who are dependent in instrumental activities of daily living, those who perceive reduced economic ability, and those who need assistance to discover new strategies to strengthen hope.

Mortality among elderly receiving long-term care: a longitudinal cohort study.

BACKGROUND AND AIMS: To investigate mortality, determinants of mortality, and time until death among elderly subjects receiving public long-term care. METHODS: This study comprises 626 respondents (age: 65-98 years). Data were collected for two cohorts (2001 and 2002). Cox regression analysis was used to identify determinants of mortality. Those who died and those who did not die were compared by, for example, demographic data and activities of daily living (ADL). RESULTS: The crude mortality rate was 9% in cohort 2001 and 14% in cohort 2002 in the first year, and 23% in cohort 2001 and 18% in cohort 2002 in the second year after decisions about care and service. Determinants of death were gender (men), severe cognitive impairment, co-morbidity, and high ADL scores. Regression analysis also showed that malignant tumors, respiratory, urinary and genito-urinary diseases were found to be significant predictors for mortality. CONCLUSIONS: The mortality rate was quite high, several diseases were common, and the need for help with ADL was wide-ranging. Results also showed that ADL scores, together with a measure of cognitive impairment, may be useful in identifying elderly subjects at high risk of mortality.

Older people's views of prioritization in health care. The applicability of an interview study.

AIM: Older people's views of prioritization in health care. The applicability of an interview study. Old age has been stated as a criterion for prioritization in health care, although older people are seldom asked for their opinions. The aim of this pilot study was to investigate the applicability of a questionnaire as a base for an interview study to explore older people's experiences and views of prioritization in health care. DESIGN: Descriptive, with a qualitative and quantitative approach. Fifty-four persons, 32 women and 22 men (aged 60-93 years), were asked to participate in a structured, tape-recorded interview covering their experience and views of the priorities applied in health care. RESULTS: The questions in the interview manual appeared to be applicable for collecting data concerning views of prioritization, but the analysis revealed that certain questions, particularly on economic matters, were missing. The procedure, a personal structured interview had advantages, for example, in capturing the respondents' reflections on the questions. The respondents emphasized the equal value of all human beings and that age is not a basis for prioritization within health care. The respondents also showed an unwillingness to precede anyone in rank. IMPLICATIONS: The questions used proved to be adequate but to be really complete further questions need to be added. This pilot study indicates that older people's views on priorities in health care differ from those expressed by the younger population. The study therefore needs to be replicated in a larger sample to be fully able to understand older people's views of prioritization, which will require exploring gender and age differences as well as other aspects that may explain variations.

Lived experience of survivors of leukemia or malignant lymphoma.

Individuals (n = 18) in remission from acute leukemia or highly malignant lymphoma were asked to narrate their lived experience of falling ill, of being under treatment, and life following this event. The transcribed texts were analyzed from a phenomenological-hermeneutic perspective, expanded by their medical and social history as related in interviews. The analysis revealed 3 themes: (I) Believed in life, fought for it and came through stronger; (II) Life went on, adapted and found a balance in the new life; (III) Life was over, felt out of control and lost belief in life. Participants in the first 2 groups viewed their quality of life as improved and stated that the struggle had been meaningful and that the experience had made them grow, as a person, related to the experience of gaining new insight or strength. The third group of survivors viewed their quality of life as worse. They found no meaning in their experience and evaluated the situation with bitterness. Thus the core of living through having acute leukemia or highly malignant lymphoma seemed to be to find meaning with it and the profound crisis it meant to them. To help people retell their experiences may be one way of processing this life-threatening disease and treatment and may be one way to developing a sense of meaning and to regain balance in life.