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Abstract: Objective: In this study among patients with cancer in the palliative phase, we analysed whether assessing the symptom, which is causing the most trouble in the patient''s every day life (‘most troublesome’ symptom) had added value apart from the presence and severity of symptoms, which are most commonly assessed in clinical practice. Methods: Patients with cancer (lung, gastro-intestinal, breast cancer) in the palliative phase from two non-academic hospitals were included in the study. Using the Symptom Monitor tool, 10 physical symptoms were assessed with regard to presence and severity. The Symptom Monitor has an extra added item indicating as the ‘most troublesome’ symptom. This item was monitored to determine whether it had added value apart from the presence of symptoms and ‘most severe’ symptom. The severity score on the indicated ‘most troublesome’ symptom was subtracted from the severity score of the ‘most severe’ symptom. The generated delta score of 0 indicated no added value, whereas a score of one or more indicated that the ‘most troublesome’ symptom would have been missed if not specifically asked for by the physician, because its severity was lower that the ‘most severe’ symptom. Results: One hundred and forty-six patients reported 590 symptoms to be present. In total, 227 symptoms were reported as ‘most severe’ symptom (n =138 patients). Among these, fatigue (n =52) and pain (n =24) were reported most frequently as ‘most severe’ symptom. In total, 134 patients indicated a symptom as ‘most troublesome’. Fatigue (n =33; 25%) and pain (n =22; 16%) were also indicated by most of these patients as the ‘most troublesome’ symptom. One hundred and fifty-two comparisons could be made between the ‘most severe’ and the ‘most troublesome’ symptom. In 102 (67%) of the comparisons assessing the ‘most troublesome’ symptom had no added value: the score for ‘most severe’ symptom did not differ from the score for the ‘most troublesome’ symptom revealing a delta score of 0. In 23 times (15%) of the 152 comparisons made, the delta score was 1 and in 27 (18%) of the comparisons the delta score was 2 or more indicating that assessing the ‘most troublesome’ symptom substantially had added value. Conclusion: In patients in the palliative phase of their disease, extra attention for the ‘most troublesome’ symptom is needed. In our study, in almost 1/3 of the cases, this symptom would have been missed the physicians attention if not specifically asked for. Practice implications: We recommend not only to assess the presence and severity of symptoms, but furthermore to assess the patient''s ‘most troublesome’ symptom in addition. [Copyright &y& Elsevier]

Abstract: This study aims to determine the extent and nature of problems in palliative care that are newly identified in the consultation process and the factors influencing their identification. The consultation process includes clarification of problems mentioned by professionals requesting advice. Data are derived from the standard registration forms of Palliative Care Consultation teams. Multilevel logistic regression analysis was carried out with newly identified problem as dependent variable. Fifty seven percent of problems (n =7854) were newly identified. Most newly identified problems were related to physical and pharmacological problems. If psychosocial/spiritual problems were identified, this occurred in most cases through clarification (70%). Newly identified problems were more likely to be identified in the domain of spiritual and psychosocial problems, in bedside consultations, in requests from clinical physicians, and for patients accommodated in a hospice or hospital. Explicit clarification of problems facilitates the identification and addressing of a more comprehensive and specific scope of problems. [Copyright &y& Elsevier]

Abstract: No instrument to assess autonomy problems in palliative care is currently available. The purpose of this study was to develop a comprehensive and concise questionnaire to measure autonomy problems in palliative cancer patients and to study its validity and reliability. We systematically developed a questionnaire through: a) a literature review of the concepts and elements of autonomy; b) qualitative analysis of interviews with patients and professional carers; c) the construction of questionnaires; and d) testing validity and reliability. The basic conceptual elements were: dependency, losing control, and limitation of activities. Patients with disseminated cancer in the palliative stage of the disease (n = 64) participated in the study. A 9-item Patient Autonomy Questionnaire (PAQ) was developed (Cronbach''s alpha 0.86), followed by a concise 4-item version (PAQs) (Cronbach''s alpha 0.71). Autonomy problems were more prevalent than pain problems. The development of the PAQ may help draw attention to autonomy problems. [Copyright &y& Elsevier]

This study presents a comprehensive overview of the problems patients experience in a palliative phase of cancer. A two-step qualitative method was used: in-depth interviews with patients and relatives (N=9 patients+7 relatives), followed by interviews (N=31 patients+15 relatives) using a checklist to confirm and complete the picture. Quality of life and quality of care domains were addressed. Patients experienced problems in all of these palliative care domains, although individual patients may have experienced only a few problems. Fatigue, feelings of futility, reluctance to accept help, fear of suffering and the fear that help would not be available if needed, were common problems. Communication problems arose when a grudge against a GP had remained, or because one family member tried to spare the other a confrontation with his/her feelings of fear or grief. A comprehensive checklist of relevant problems is presented. [Copyright &y& Elsevier]

Investigates how caregivers determine that they are capable of caring for demented persons living in a community in the Netherlands. Characteristics of the demented person, the demented person's social network and that of the caregiver; Clinical symptoms of dementia.

Abstract: Objective: To investigate the time from symptom onset to institutionalization in persons with young-onset dementia (YOD) and compare these findings with late-onset dementia (LOD), and to determine which factors predict institutionalization in persons with YOD compared with LOD. Design/Setting: Longitudinal study of community-dwelling patients with YOD and LOD and their caregivers. Participants: A total of 226 patients with YOD and 102 with LOD and their informal caregivers were recruited through memory clinics and health care facilities. Measurements: Cox proportional hazard models were used to relate covariates with time to institutionalization. The main outcome was time from symptom onset to institutionalization. Key predictors were cohort (YOD or LOD), neuropsychiatric symptoms, caregiver distress caused by neuropsychiatric symptoms, and caregivers’ sense of competence (Short Sense of Competence Questionnaire total score). Results: The time from symptom onset to institutionalization was nearly 9 years for patients with YOD compared with approximately 4 years for patients with LOD. In the YOD group, apathy significantly predicted time of institutionalization. Furthermore, the caregiver’s competence in caring for the person with dementia significantly predicted institutionalization in both groups. Conclusions: Patients with YOD are cared for at home for a longer period than patients with LOD. The results of this study underline the importance of a timely diagnosis for these patients and their families to facilitate the initiation of appropriate care and support. Support programs aimed at enhancing the caregivers’ sense of competence and ability to deal with neuropsychiatric symptoms, especially apathy, may postpone the institutionalization of the patient. [Copyright &y& Elsevier]

Abstract: Objective: To gain insight into the experiences of a palliative care patient and her husband who were living on borrowed time. Methods: A qualitative single case design was used. Systematic content analysis of the interview data, obtained in an in-depth semi-structured interview, from the husband and wife was conducted to extract themes relating to living on borrowed time. Results: Three themes were identified: shifts in the interpretation of physical signs and symptoms, altered view of the future and altered choices and priorities. Conclusion: The identified themes lead to a better understanding of the phenomenon of living on borrowed time. Yet, refinement of, and variation within the themes still need to be studied in order to get more grips on the themes and to be better able to help patients to integrate the ‘new reality’. Practice implications: Our findings can be used to support professionals in the practical application of care when their patients need to integrate the ‘new reality’ and seek new equilibrium, e.g. converted into a conversational guide, or used for educational purposes. [Copyright &y& Elsevier]

Palliative care in The Netherlands is mainly provided by generalist professionals who are part of the regular health care system. In order to provide good quality palliative care, they need options for training and consultation. Therefore, Palliative Care Consultation (PCC) teams were established, which inform, support, and advise professional caregivers involved with patients in palliative care without taking over responsibility. This study is the first nationwide study on PCC teams. Investigated was the nature and effect of consultations by registration and evaluation of consultations given by 19 PCC teams during a one-year period. Sixty-one percent of the requesting caregivers were primary care professionals and the problems discussed covered the entire field of palliative care, although physical problems played a dominant role. Although the patient was often not seen by the consultant, the consultant appeared to be able to identify more problems than initially discussed by the requesting professional. The types of problems discussed were hardly related to patient characteristics but more related to the discipline of the professional caregiver. According to the requesting professionals, consultation was helpful and contributed to improving the quality of palliative care. [Copyright &y& Elsevier]

Abstract: Background: A multidisciplinary, evidence-based care program to improve the management of depression in nursing home residents was implemented and tested using a stepped-wedge design in 23 nursing homes (NHs): “Act in case of Depression” (AiD). Objective: Before effect analyses, to evaluate AiD process data on sampling quality (recruitment and randomization, reach) and intervention quality (relevance and feasibility, extent to which AiD was performed), which can be used for understanding internal and external validity. In this article, a model is presented that divides process evaluation data into first- and second-order process data. Methods: Qualitative and quantitative data based on personal files of residents, interviews of nursing home professionals, and a research database were analyzed according to the following process evaluation components: sampling quality and intervention quality. Setting: Nursing home. Results: The pattern of residents’ informed consent rates differed for dementia special care units and somatic units during the study. The nursing home staff was satisfied with the AiD program and reported that the program was feasible and relevant. With the exception of the first screening step (nursing staff members using a short observer-based depression scale), AiD components were not performed fully by NH staff as prescribed in the AiD protocol. Conclusion: Although NH staff found the program relevant and feasible and was satisfied with the program content, individual AiD components may have different feasibility. The results on sampling quality implied that statistical analyses of AiD effectiveness should account for the type of unit, whereas the findings on intervention quality implied that, next to the type of unit, analyses should account for the extent to which individual AiD program components were performed. In general, our first-order process data evaluation confirmed internal and external validity of the AiD trial, and this evaluation enabled further statistical fine tuning. The importance of evaluating the first-order process data before executing statistical effect analyses is thus underlined. [ABSTRACT FROM AUTHOR]

Abstract: Background: A multidisciplinary, evidence-based care program to improve the management of depression in nursing home residents was implemented and tested using a stepped-wedge design in 23 nursing homes (NHs): “Act in case of Depression” (AiD). Objective: Before effect analyses, to evaluate AiD process data on sampling quality (recruitment and randomization, reach) and intervention quality (relevance and feasibility, extent to which AiD was performed), which can be used for understanding internal and external validity. In this article, a model is presented that divides process evaluation data into first- and second-order process data. Methods: Qualitative and quantitative data based on personal files of residents, interviews of nursing home professionals, and a research database were analyzed according to the following process evaluation components: sampling quality and intervention quality. Setting: Nursing home. Results: The pattern of residents’ informed consent rates differed for dementia special care units and somatic units during the study. The nursing home staff was satisfied with the AiD program and reported that the program was feasible and relevant. With the exception of the first screening step (nursing staff members using a short observer-based depression scale), AiD components were not performed fully by NH staff as prescribed in the AiD protocol. Conclusion: Although NH staff found the program relevant and feasible and was satisfied with the program content, individual AiD components may have different feasibility. The results on sampling quality implied that statistical analyses of AiD effectiveness should account for the type of unit, whereas the findings on intervention quality implied that, next to the type of unit, analyses should account for the extent to which individual AiD program components were performed. In general, our first-order process data evaluation confirmed internal and external validity of the AiD trial, and this evaluation enabled further statistical fine tuning. The importance of evaluating the first-order process data before executing statistical effect analyses is thus underlined. [Copyright &y& Elsevier]