Background: The McGill Quality of Life Questionnaire - Expanded (MQOL-E) and the Quality of Life in Life-Threatening Illness-Family Carer/Caregiver version (QOLLTI-F) are developed for use with patients facing the end of life and their family carers, respectively. They are also developed for possible use as companion instruments. Contemporary measurement validity theory places emphasis on response processes, i.e. what people feel and think when responding to items. Response processes may be affected when measurement instruments are translated and adapted for use in different cultures. The aim of this study was to translate and examine content validity and response processes during completion of MQOL-E and QOLLTI-F version 2 (v2) among Swedish patients with life-threatening illness and their family carers.
Methods: The study was conducted in two stages (I) translation and adaptation (II) examination of content validity and response processes using cognitive interviews with 15 patients and 9 family carers. Participants were recruited from the hemodialysis unit, heart clinic, lung clinic and specialized palliative care of a Swedish county hospital. Patients had life-threatening illness such as advanced heart failure, advanced chronic obstructive pulmonary disease, end-stage kidney disease or advanced cancer. Patients were outpatients, inpatients or receiving home care.
Results: Patients and family carers respectively believed that the items of the MQOL-E and QOLLTI-F v2 reflect relevant and important areas of their quality of life. Although some items needed more time for reflection, both instruments were considered easy to understand. Some changes were made to resolve issues of translation. Participants expressed that reflecting on their situation while answering questions was valuable and meaningful to them, and that responding was an opportunity to express feelings.
Conclusions: The results of response processes pertaining to the Swedish translations of both MQOL-E and QOLLTI-F v2 contribute evidence regarding content validity, linguistic equivalence and cultural appropriateness of the translated instruments. In addition, results show that the instruments may support conversations on matters of importance for quality of life between patients and/or family carers and health care professionals. Further research is needed to study the psychometric properties of Swedish translations.
Background: Knowing the opinions of patients with Progressive Neurological Diseases (PNDs) and their family members on end-of-life care can help initiate communication and the drawing up of a care plan. The aim of this paper is to describe the creation and psychometric properties of the newly developed APND-EoLC questionnaire (the Attitudes of Patients with Progressive Neurological Disease to End of Life Care questionnaire).
Methods: Following focus group discussion, four main areas of interest were identified: patients’ and family members’ attitudes towards end-of-life care, factors influencing decisions about treatment to prolong patients’ life, concerns and fears regarding dying, and opinions on the system of care. The created questions were divided into domains based on factor analysis and psychometric properties were evaluated by sample of 209 patients with PND and 118 their family members.
Results: The final version of the scale contains a total of 28 questions divided into six domains (end-of-life control, keeping patients alive, trust in doctors/treatment, trust in social support, sense of suffering, and dependence/loss of control) and five individual questions determining views of the care system with specified response options. Construct validity was verified by confirmatory factor analysis for each evaluated area individually. Appropriate psychometric properties were identified in the questionnaire.
Conclusions: The APND-EoLC questionnaire can be recommended for use in both research and clinical practice.
Introduction: Nurses play an important role in caring for dying patients. However, little is known about the attitude towards death of the registered nurses in China.
Materials and Methods: A knowledge, attitude, and the practice (KAP) survey using standardized questionnaires was conducted at eight teaching hospitals in Jiangsu Province, China. In total, 366 nursing interns were recruited and 357 turned in valid response. Data about the interns' demographic characteristics and their attitudes to death in five domains, including fear of death, death avoidance, natural acceptance, approach acceptance, and escape acceptance, were collected.
Results: Compared to the norms, the nursing interns had statistically significantly higher scores in the domains death avoidance, approach acceptance, and fear of death (14.9 vs. 11.1, 26.2 vs. 24.2, and 20.3 vs. 19.0, respectively); however, statistically significantly lower scores were in the domains natural acceptance and escape acceptance (18.4 vs. 22.0, and 13.6 vs. 15.1, respectively). Religious belief, experience of a deceased relative in family, death education, and family atmosphere of discussing death are positively associated with one or more domains of attitude towards death.
Conclusion: The positive attitude towards death and death education before clinical practice are helpful for nursing interns when they care for dying patients. In general, the scores of attitude towards death are at a moderate level in the surveyed Chinese nursing interns. The death education for nursing students needs to be reinforced in China.
Background: Death and dying care is an area with less attention in nursing. This even is evidenced as more challenging in some populations such as neonates. Neonatal intensive care unit (NICU) nurses should be aware of the quality of care they provide for dying neonates and their families to find the areas which need attention.
Objective: The aim of this study was to assess the psychometric features of the Quality of Dying and Death (QODD) questionnaire in NICU nurses in Tehran, the capital city of Iran.
Methods: This methodological study was conducted in 2017. For this purpose, using census method, 130 NICU nurses working in selected hospitals participated. After the backward-forward translation, based on the method proposed by the International Test Commission, the psychometric properties of the Persian QODD were examined through the assessment of the face, content and construct validity, internal consistency, and stability.
Results: Final Persian QODD's content and face validity were accepted through a qualitative method. In the confirmatory factor analysis, the original version of QODD was not confirmed. Subsequently, an exploratory factor analysis was carried out in which phrases were included in three dimensions (symptom control, preparation for death of neonate, and professional attention) that explained 75% of the variance. Cronbach's alpha values ranged from 0.82 to 0.88 for these three dimensions. The intraclass correlation coefficient (ICC) was ICC = 0.94 between two tests performed with a 2-week interval on twenty eligible nurses.
Conclusions: The Persian version of QODD has acceptable psychometric properties in nurses working with the neonatal population and can be used to investigate the NICU nurses' opinion on the QODD provided in NICU patients.
BACKGROUND: There are no processes that routinely assess end-of-life care in Australian general practice. This study aimed to develop a data collection process which could collect observational data on end-of-life care from Australian general practitioners (GPs) via a questionnaire and clinical data from general practice software.
METHODS: The data collection process was developed based on a modified Delphi study, then pilot tested with GPs through online surveys across three Australian states and data extraction from general practice software, and finally evaluated through participant interviews.
RESULTS: The developed data collection process consisted of three questionnaires: Basic Practice Descriptors (32 items), Clinical Data Query (32 items) and GP-completed Questionnaire (21 items). Data extraction from general practice software was performed for 97 decedents of 10 GPs and gathered data on prescriptions, investigations and referral patterns. Reports on care of 272 decedents were provided by 63 GPs. The GP-completed Questionnaire achieved a satisfactory level of validity and reliability. Our interviews with 23 participating GPs demonstrated the feasibility and acceptability of this data collection process in Australian general practice.
CONCLUSIONS: The data collection process developed and tested in this study is feasible and acceptable for Australian GPs, and comprehensively covers the major components of end-of-life care. Future studies could develop an automated data extraction tool to reduce the time and recall burden for GPs. These findings will help build a nationwide integrated information network for primary end-of-life care in Australia.
PURPOSE: Several validated outcome measures, among them the Zarit Burden Interview (ZBI), are valid for measuring caregiver burden in advanced cancer and dementia. However, they have not been validated for a wider palliative care (PC) setting with non-cancer disease. The purpose was to validate ZBI-1 (ultra-short version and proxy rating) and ZBI-7 short versions for PC.
METHODS: In a prospective, cross-sectional study with informal caregivers of patients in inpatient (PC unit, hospital palliative support team) and outpatient (home care team) PC settings of a large university hospital, content validity and acceptability of the ZBI and its structural validity (via confirmatory factor analysis (CFA) and Rasch analysis) were tested. Reliability assessment used internal consistency and inter-rater reliability and construct validity used known-group comparisons and a priori hypotheses on correlations with Brief Symptom Inventory, Short Form-12, and Distress Thermometer.
RESULTS: Eighty-four participants (63.1% women; mean age 59.8, SD 14.4) were included. Structural validity assessment confirmed the unidimensional structure of ZBI-7 both in CFA and Rasch analysis. The item on overall burden was the best item for the ultra-short version ZBI-1. Higher burden was recorded for women and those with poorer physical health. Internal consistency was good (Cronbach's a = 0.83). Inter-rater reliability was moderate as proxy ratings estimated caregivers' burden higher than self-ratings (average measures ICC = 0.51; CI = 0.23-.69; p = 0.001).
CONCLUSION: The ZBI-7 is a valid instrument for measuring caregiver burden in PC. The ultra-short ZBI-1 can be used as a quick and proxy assessment, with the caveat of overestimating burden.
Working with terminally ill patients is regarded as a stressful or traumatic event and may lead to negative outcomes, including job burnout and secondary traumatic stress (STS). Psychological resilience might protect employees from the negative consequences of stress. The aim of this study was to determine the mediating role of job burnout in the relationship between psychological resilience and STS. The study included 72 nurses aged from 22 to 72 years old (M = 46.01, SD = 10.69), working with terminally ill patients. The recipients completed 3 questionnaires: the Secondary Traumatic Stress Scale, the Oldenburg Burnout Inventory, and the Resilience Measurement. The results reveal negative associations between resilience, job burnout, and secondary traumatic stress, and a positive correlation between secondary traumatic stress and job burnout. Mediation analysis showed that job burnout plays a mediating role in the relationship between psychological resilience and secondary traumatic stress. Our findings highlight the role played by job burnout in the manifestation of STS. Professional and nonprofessional interventions for individuals experiencing work-related traumatic stress would benefit from interventions that build personal resources.
Background: Nutritional impairment is common in cancer patients and adversely affects quality of life (QoL). The aim of this study was to investigate the association between nutritional status and QoL in incurable cancer patients in palliative care.
Methods: A prospective cohort with incurable cancer patients referred to the specialized Palliative Care Unit of the National Cancer Institute in Brazil was conducted. The nutritional risk (NR) was assessed using the Patient-Generated Subjective Global Assessment short form (PG-SGA SF), and cancer cachexia (CC) was defined according to the international consensus. QoL was evaluated using the Quality of Life Questionnaire Core 15 Palliative (QLQ-C15-PAL). Multivariate linear regressions analyses were performed to assess the relationship between the nutritional status and QoL scores.
Results: A total of 1039 consecutive patients were included. A high prevalence of NR (85.4%) and CC (78.7%) were observed. The patients with worse nutritional status presented significantly poorer physical, emotional, symptoms domains scales, and overall QoL. CC were significantly associated with QoL scores for dyspnea (p = 0.013), insomnia (p = 0.046), and appetite loss (p = 0.015), while NR were associated with all the QoL domains scales covered in QLQ-C15-PAL.
Conclusion: Our findings support that impaired nutritional status was associated with poor QoL in incurable cancer patients. NR assessed by PG-SGA SF better reflects physical, emotional, symptom burden, and overall QoL scores. Thus, this tool may contribute in identifying patients at risk of deterioration QoL.
This study explores how medical students feel about caring for terminally ill patients as well as how their medical courses prepare them for addressing end-of-life (EOL) issues with patients. Four hundred and five Mexican medical students were surveyed through the Student Views on Death questionnaire. The vast majority of students (94%) felt that physicians should inform patients of their impending death. Most students said they felt comfortable talking with (61%) or examining (76%) terminally ill patients. However, only half the students actually talked with patients about death. Participants in our study were interested in learning about EOL medical attention, yet most considered themselves poorly prepared to offer this type of care to terminally ill patients. The study provides objective data on a topic that has scarcely been explored in Mexico, data that will be useful in designing educational activities to improve EOL medical training.
Purpose: The aim of the study was to examine the psychosocial problems and spiritual coping styles of the family caregivers related to patients receiving palliative care.
Design and Methods: The research sample consisted of 76 family caregivers related to palliative care patients. The data collection method used were questionnaire forms. The two forms used were Hospital Anxiety Depression Scale and Religious Coping Methods Scale.
Findings: The mean anxiety score of the participants was 10.86 ± 4.30, mean depression score was 9.38 ± 3.66, mean positive coping scale score was 25.31 ± 3.85, and mean negative coping scale score was 10.32 ± 3.38.
Practice Implications: Healthcare professionals involved in palliative care are encouraged to evaluate the spiritual experiences of family caregiver to support their wellbeing.
Palliative care (PC) is an essential part of the healthcare system, aiming to improve the quality of life of terminally ill patients and their families through prevention, relief of suffering, and providing psychosocial and spiritual support. To achieve high-quality PC, medical education should encompass PC training, including knowledge of PC, and skills and attitudes towards PC, at the undergraduate level. The aim of this study is to identify PC knowledge and experience among undergraduate medical and nursing students at Sultan Qaboos University (SQU), a government university in Oman. A validated questionnaire that measures knowledge and experiences of PC was administered to all final year medical and nursing students (N = 196) at SQU. The majority of the students (93.4%) were aware of the term PC, but most of them (68.9%) did not have any experience of PC. Around half of the students (54.9%) had a vague notion of how to implement PC, and only 41.3% felt confident in providing PC for terminally ill patients. Less than half of the students (44.8%) were aware that the patient’s family should be included in PC, as well as the patient. The majority of students (71.3%) thought that PC should be included in the undergraduate teaching curriculum, though few students (17.9%) knew that PC is currently a specialized medical unit (sub-department) in Oman. Most of the students (73.0%) thought that terminally ill patients have the right to choose “do not resuscitate,” but few students agreed that patients should be able to request a lethal dose (24.0%) or consent to a physician-assisted suicide (35.7%). Most of the students (84.7%) believed that special psychological support should be provided for doctors and nurses working in PC. Bivariate analysis showed no significance in the knowledge of applied PC in relation to which of the colleges the students were from (p = 0.283) or gender of the students (p = 0.068). Despite the fact that SQU students had favorable attitudes towards PC, they have insufficient knowledge and lack of experience. As the number of geriatric and terminal cancer patients increases across Oman, there is a need for the healthcare system to provide high-quality and effective PC services. Thus, there is an urgent need to integrate PC teaching courses as part of the undergraduate medical education for medical and nursing students.
Advanced cancer patients are at an increased risk of developing depressive symptoms, which can lead to major depressive disorder and a poor quality of life. It is important that symptoms of depression to be addressed early and frequently throughout the trajectory of the disease process. Depression is underdiagnosed and therefore undertreated in advanced cancer patients. Clinicians often fail to perform regular depression screenings as recommended by the National Comprehensive Cancer Network. Depressive symptoms are overlooked as they tend to overlap with the effects of disease progression and cancer treatments. Patients' complaints of anorexia, chronic pain, and sleep disturbances do not necessarily trigger practitioners to perform depression screenings. African Americans with advanced cancer are at a higher risk of developing depression, but may not identify as depressed due to the stigma of mental health in the black community. Screening tools such as the 2- and 9-item Patient Health Questionnaire, Beck Depression Inventory II, Hospital Anxiety and Depression Scale, and the Distress Thermometer and Problem List are common brief instruments that can screen for depression. Providing early symptom relief of depressive symptoms through psychotherapy and pharmacologic interventions will benefit the patient, family, and caregivers while improving the quality of life throughout the trajectory of the illness.
Introduction: End-of-life care (EOLC) is an increasingly important concern in the management of terminally ill patients. Effective EOLC depends significantly on the physicians working in the critical care units. Thus, adequate knowledge of critical care professionals regarding EOLC is important. We conducted this study to evaluate the awareness and knowledge of doctors working in critical care units toward EOLC.
Materials and methods: Doctors working in critical care units were invited to fill paper-based questionnaire. The validated questionnaire was constructed based on the existing literature on EOLC and expert opinion. The questionnaire comprised four sections: demographic details, experience with EOLC situations, general awareness of EOLC, and specific awareness of EOLC in clinical practice. The collected data were analyzed by descriptive analysis.
Results: Most respondents had not counseled more than five families regarding EOLC over 1 month. Majority of the respondents (81.7%) had heard of EOLC; the major source of information being their work in the concerned specialty. Only 29.2% of the respondents applied EOLC principles in their clinical practice. Main barriers were lack of information and training. Only 20.3% of the respondents were aware of Indian guidelines about EOLC. Majority of the respondents disagree regarding the usage of critical care units and resuscitation of terminally ill patients and were in favor of home care. One-third respondents felt uncomfortable in discussing EOLC issues with the families. Half of the respondents felt that they were only somewhat competent in managing EOLC issues. Most respondents opined that training and education in medical curriculum for terminally ill patients are lacking and were in strong favor of inclusion of specific training for the same.
Conclusion: The EOLC needs to be an integral part of critical care management and teaching curriculum. An integral referral system may also be an option for various advance disease patients getting treatment from critical care specialists for EOLC decision.
Objectives: Decision-making on artificial nutrition and hydration for patients terminally ill with cancer can be influenced by nurses' knowledge, attitudes, and behavioral intentions. A comprehensive 57-item questionnaire including six sections on the knowledge, attitudes, and behavioral intentions in providing artificial nutrition and hydration to patients terminally ill with cancer has been developed and used in Taiwan. However, the questionnaire needs further psychometric testing and adaptation for other cultures. This study aimed to cross-culturally adapt the questionnaire within the Italian cultural context and test its psychometric properties.
Methods: The questionnaire was translated into Italian and cross-culturally adapted per the recommendations by Beaton. A panel of 10 experts assessed content validity. A multicenter cross-sectional study was conducted with 411 nurses to test its psychometric properties. Dimensionality and construct validity were assessed through exploratory and confirmatory factor analyses. Reliability was estimated by composite and traditional methods, such as the Kuder Richardson formula-20 and Cronbach's a coefficients.
Results: The overall content validity index was 0.85. A confirmatory factor analysis was conducted for the knowledge section and the four attitudes sections. A preliminary analysis for the behavioral intentions section yielded non acceptable results. The internal consistency of the scales was adequate (range, 0.64-0.93).
Conclusions: This study constituted a notable advancement in the psychometric testing of the tool, and provides evidence that the Italian version of the questionnaire has acceptable psychometric characteristics for the sections on knowledge and attitudes.
Background: To identify the necessary care for dying patients in intensive care units (ICUs), we designed a retrospective study to evaluate the quality of dying and death (QODD) experienced by the surrogates of patients with medical illness who died in the ICU of a tertiary referral hospital.
Methods: To achieve our objective, the authors compared the QODD scores as appraised by the relatives of patients who died of cancer under hospice care with those who died in the ICU. For this study, a Korean version of the QODD questionnaire was developed, and individual interviews were also conducted.
Results: Sixteen people from the intensive care group and 23 people from the hospice care group participated in the survey and completed the questionnaire. The family members of patients who died in the ICU declined participation at a high rate (50%), with the primary reason being to avoid bringing back painful memories (14 people, 87.5%). The relatives of the intensive care group obtained an average total score on the 17-item QODD questionnaire, which was significantly lower than that of the relatives of the hospice group (48.7±15.5 vs. 60.3±14.8, P=0.03).
Conclusions: This work implies that there are unmet needs for the care of dying patients and for the QODD in tertiary hospital ICUs. This result suggests that shared decision making for advance care planning should be encouraged and that education on caring for dying patients should be provided to healthcare professionals to improve the QODD in Korean ICUs.
BACKGROUND AND AIM: Healthcare professionals working in palliative care are exposed to emotionally intense conditions. Scientific literature suggests Expressive Writing as a valid tool for the adjustment to traumatic events. For health workers, EW represents an important support to prevent Compassion Fatigue and Burnout. As literature showed that Compassion Satisfaction, Group Cohesion and the Organizational Commitment are protective factors able to counter the onset of Compassion Fatigue and Burnout, the aim of this study is evaluating the effect of Expressive Writing protocol in Palliative Care workers on Compassion Satisfaction, Group Cohesion and Organizational Commitment.
METHODS: A quasi-experimental quantitative 2x2 prospective study was conducted with two groups and two measurements. 66 professionals were included. Outcome variables were measured using: Organizational Commitment Questionnaire, Compassion Satisfaction Rating Scale, ICONAS Questionnaire, Questionnaire for the evaluation of EW sessions.
RESULTS: The parametric analysis through Student t test did not show statistical significance within the experimental group and between the experimental and control groups. One significant difference in the pre-intervention assessment of Normative Commitment t (gl 64) = -2.008 for p< 0.05, higher in the control group, disappeared in the post intervention evaluation. An improvement trend in all variables within and between groups was present, with a positive assessment of utility from the participants.
CONCLUSIONS: This intervention did not significantly impact outcome variables. It is however conceivable that by modifying the intervention methodology, it could prove effective. The positive evaluation by the operators, suggests to keep trying modelling a protocol tailored on Palliative Care professionals.
The study objective was to develop and test a new survey instrument that measures caregiver-centered communication. We developed a questionnaire inspired by the National Cancer Institute framework on patient-centered communication, focusing on family caregiver communication for this tool. The questionnaire includes 5 subscales: exchange of information, relationship with team, emotions, managing care, and decision-making. The initial questionnaire was reviewed by domain experts for face validity and edited further to include 30 items. We administered the modified questionnaire to 115 family caregivers of patients with serious illness in various settings. Cronbach a for the entire scale was 0.97 and ranged from 0.82 to 0.93 for the 5 subscales. Participants found that the survey addressed important concepts and that items were in most cases easy to understand. This instrument provides a structured way to assess caregiver-centered communication, addressing a pressing need for tools that measure the extent to which communication is responsive to the needs and preferences of family caregivers. Further testing and refinement are needed to improve the ease of use and examine the reliability and validity of this measure.
BACKGROUND: Rapid frailty screening remains problematic in primary care. The diagnostic test accuracy (DTA) of several screening instruments has not been sufficiently established. We evaluated the DTA of several screening instruments against two reference standards: Fried's Frailty Phenotype [FP] and the Adelaide Frailty Index [AFI]), a self-reported questionnaire.
METHODS: DTA study within three general practices in South Australia. We randomly recruited 243 general practice patients aged 75+ years. Eligible participants were 75+ years, proficient in English and community-dwelling. We excluded those who were receiving palliative care, hospitalised or living in a residential care facility.We calculated sensitivity, specificity, predictive values, likelihood ratios, Youden Index and AUC for: Edmonton Frail Scale [EFS], FRAIL Scale Questionnaire [FQ], Gait Speed Test [GST], Groningen Frailty Indicator [GFI], Kihon Checklist [KC], Polypharmacy [POLY], PRISMA-7 [P7], Reported Edmonton Frail Scale [REFS], Self-Rated Health [SRH] and Timed Up and Go [TUG]) against FP [3+ criteria] and AFI [> 0.21].
RESULTS: We obtained valid data for 228 participants, with missing scores for index tests multiply imputed. Frailty prevalence was 17.5% frail, 56.6% pre-frail [FP], and 48.7% frail, 29.0% pre-frail [AFI]. Of the index tests KC (Se: 85.0% [70.2 - 94.3]; Sp: 73.4% [66.5 - 79.6]) and REFS (Se: 87.5% [73.2 - 95.8]; Sp: 75.5% [68.8 - 81.5]), both against FP, showed sufficient diagnostic accuracy according to our pre-specified criteria.
CONCLUSIONS: Two screening instruments - the KC and REFS, show the most promise for wider implementation within general practice, enabling a personalised approach to care for older people with frailty.
This study aimed to describe Australian long-term care (LTC) personnel’s knowledge and attitudes concerning palliative care for residents with advanced dementia, and explore relationships with LTC facility/personnel characteristics. An analysis was undertaken of baseline data from a cluster randomised controlled trial of facilitated family case conferencing for improving palliative care of LTC residents with advanced dementia (the ‘IDEAL Study’). Participants included any LTC personnel directly involved in residents’ care. Knowledge and attitudes concerning palliative care for people with advanced dementia were measured using the questionnaire on Palliative Care for Advanced Dementia. Univariate and multivariate analyses explored relationships between personnel knowledge/attitudes and facility/personnel characteristics. Of 307 personnel in the IDEAL Study, 290 (94.5%) from 19/20 LTCFs provided sufficient data for inclusion. Participants included 9 (2.8%) nurse managers, 59 (20.5%) registered nurses, 25 (8.7%) enrolled nurses, 187 (64.9%) assistants in nursing/personal care assistants and 9 (3.1%) care service employees. In multivariate analyses, a facility policy not to rotate personnel through dementia units was the only variable associated with more favourable overall personnel knowledge and attitudes. Other variables associated with favourable knowledge were a designation of nursing manager or registered or enrolled nurse, and having a preferred language of English. Other variables associated with favourable attitudes were tertiary level of education and greater experience in dementia care. Like previous international research, this study found Australian LTC personnel knowledge and attitudes regarding palliative care for people with advanced dementia to be associated with both facility and personnel characteristics. Future longitudinal research is needed to better understand the relationships between knowledge and attitudes, as well as between these attributes and quality of care.
This study aimed to determine the preferences of community-dwelling older people about information disclosure regarding poor prognosis, the likely symptoms and problems, and the care options available in a situation of serious illness with less than a year to live; and to identify factors associated with a preference for information disclosure regarding poor prognosis. The Brazilian version of the Preferences and Priorities for End of Life Care (PRISMA) questionnaire was administered face-to-face to 400 older people, living in the city of Belo Horizonte, Minas Gerais, Brazil. The main results indicated that 74.0% preferred to be informed that they had limited time left, 89.3% wished to be informed about symptoms and problems, and 96.3% about available care options. The factors associated with preferences for information about poor prognosis were: gender (women: OR = 0.446, 95% CI: 0.269-0.738) and choosing the least preferred place to die (home of a relative or friend: OR = 2.423, 95% CI: 1.130-5.198. These results show that most older people want to be informed in an advanced illness situation with less than a year to live. Health care professionals need to be prepared to anticipate news about poor prognosis and the disease.