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ABSTRACTBackground:Dementia, even more than cancer, demands long-term care. While in Indonesia cancer is accepted as a disease requiring caregiving, dementia is still considered "a normal condition." These differences might affect the experiences of caregivers, especially those relating to social health, the subject of our study. We aim to describe and compare the lived experiences of family caregivers of patients with cancer (PWC) with those of patients with dementia (PWD) in Yogyakarta, Indonesia, and to explore the role of their social health in these experiences.Method: A qualitative design was applied. In-depth face-to-face interviews were conducted with PWC and PWD caregivers in two outpatient clinics of a tertiary hospital. The constant comparative method was applied to analyze the data that were interpreted using the concept of social health to explore the experiences of the caregivers. We used Atlas.ti software.Results: Three themes were identified: problems with caregiving, dealing with problems, and beliefs in caregiving. We found more similarities than differences in the experiences of caregivers in both groups. Half of the categories were related to social health: challenges, consequences, hiding, social support, and the caregiver's approach. The organization of dementia care is characterized by simplicity and direct ties between medical specialists, PWD, and caregivers, whereas cancer care encounters coordination problems.Conclusions: Family caregivers of both groups mostly had similar experiences of the caregiving process. Gaining a better understanding of the specific experiences of caregivers, and their social health, opens new avenues for interventions to improve their quality of life. [ABSTRACT FROM AUTHOR]

Background Many patients with cancer suffer from pain, which is often not optimally treated. In 2008, the evidence-based, multidisciplinary Dutch guideline on the diagnosis and treatment of pain in this patient group was published. We assessed knowledge about and adherence to the guideline by pain specialists. Methods A cross-sectional case vignette survey describing a palliative patient with intractable pancreatic cancer and pain was sent to all 350 Dutch anesthesiologists registered as pain specialists at the Netherlands Association of Anesthesiology. Descriptive statistics were conducted. Results Ninety-three pain specialists completed the questionnaire (27%). The majority appeared to follow the guideline recommendations on pharmacological (99%) and invasive treatment (95%) in the diverse stages of the disease. However, the recommendation to use a one-dimensional pain scale to evaluate the effect of pain treatment and the recommendation to perform a multidimensional pain assessment if the patient in pain is in a deteriorating stage were only followed by a minority of the respondents (23% and 15%, respectively). Conclusions Regarding most recommendations, Dutch pain specialists know and intend to follow the national multidisciplinary cancer pain guideline. Yet, only a minority of them perform structural pain assessment of the patient with cancer pain. However, as the response rate was low (27%), the results should be interpreted with caution and cannot be generalized to the entire population of pain specialists in the Netherlands. We recommend that, in the guideline update and implementation programs, more attention be given to thorough assessment of the patient with pain and cancer. [ABSTRACT FROM AUTHOR]

Background: There is a gap between readily available evidence of best practice and its use in everyday palliative care. The IMPACT study evaluated the potential of facilitated use of Quality Indicators as tools to improve palliative care in different settings in England. Methods: 1) Modelling palliative care services and selecting a set of Quality Indicators to form the core of an intervention, 2) Case studies of intervention using the Quality Indicator set supported by an expert in service change in selected settings (general practice, community palliative care teams, care homes, hospital wards, in-patient hospices) with a before-and-after evaluation, and 3) realist evaluation of processes and outcomes across settings. Participants in each setting were supported to identify no more than three Quality Indicators to work on over an eight-month period in 2013/2014. Results: General practices could not be recruited to the study. Care homes were recruited but not retained. Hospital wards were recruited and retained, and using the Quality Indicator (QI) set achieved some of their desired changes. Hospices and community palliative care teams were able to use the QI set to achieve almost all their desired changes, and develop plans for quality improvements. Improvements included: increasing the utility of electronic medical records, writing a manual for end of life care, establishing working relationships with a hospice; standardising information transfer between settings, holding regular multi-disciplinary team meetings, exploration of family carers' views and experiences; developing referral criteria, and improvement of information transfer at patient discharge to home or to hospital. Realist evaluation suggested that: 1) uptake and use of QIs are determined by organisational orientation towards continuous improvement; 2) the perceived value of a QI package was not powerful enough for GPs and care homes to commit to or sustain involvement; 3) the QI set may have been to narrow in focus, or more specialist than generalist; and 4) the greater the settings''top-down' engagement with this change project, the more problematic was its implementation. Conclusions: Whilst use of QIs may facilitate improvements in specialist palliative care services, different QI sets may be needed for generalist care settings. [ABSTRACT FROM AUTHOR]

Purpose: Pain is a major problem in all cancer stages. Cancer pain guidelines are developed to improve management of pain. It is unclear whether these recommendations are applied in daily practice. Therefore, the objective of this study was to assess medical oncologists' adherence to an evidence-based clinical practice guideline in cancer pain management and their confidence in treatment choices. Methods: A cross-sectional case vignette survey describing a patient with intractable pancreatic cancer and pain was sent to all 268 medical oncologists registered at the Netherlands Association of Internal Medicine. Descriptive statistics were conducted. Results: Sixty-three of 268 medical oncologists (24 %) completed the survey. Adherence to the different recommendations of the guideline ranged from 18 to 100 %. Confidence for treatment choice ranged from 5.6 to 9.5 on a Numeric Rating Scale (0-10). Most of the responding oncologists (94 %) adhered to prescribing paracetamol as first-line pain treatment, and all prescribed a laxative in combination with opioids to prevent constipation. However, only 24 % of the respondents adhered to the guideline when first-line treatment had insufficient effect. Additionally, only 35 % adhered to the recommendation for insomnia treatment providing psychosocial support or using a multidimensional pain questionnaire besides pharmacological treatment. Finally, only 18 % adhered to the recommendation to perform a multidimensional pain assessment when disease worsens and pain increases. Conclusions: The recommendations of the guideline have been partly adopted in cancer pain practice by medical oncologists. Particularly, pain assessment is not applied in the recommended manner. Therefore, implementation strategies should focus on adequate pain assessment in patients with cancer. [ABSTRACT FROM AUTHOR]

Background Being involved in caring for family members during illness is part of the Indonesian culture, even during hospitalization. It is unknown which factors influence the quality of life (QoL) of family members taking care of their loved ones. The present study aims to identify factors influencing the QoL of family caregivers of hospitalized patients with cancer in Indonesia. Methods A cross-sectional survey was performed. Data were collected in a general hospital in Yogyakarta from September to December 2011. Family caregivers of patients with cancer were invited to participate. Regression analysis was used to determine which aspects of caring and which demographic characteristics influenced their QoL. The Caregiver QoL Index-Cancer questionnaire was used to measure the QoL. Results One hundred of 120 invited caregivers (83%) completed the questionnaire. Being involved in psychological issues in caring ( β = 0.374; p = 0.000), younger age ( β = −0.282; p = 0.003), no previous caring experience ( β = −0.301; p = 0.001), and not being the spouse ( β = −0.228; p = 0.015) negatively influenced the QoL and explained 31% of the variation (adjusted R2 = 0.312; F = 12.24; p = 0.000). Gender, education level, and time spent on caring did not influence the QoL of family caregivers. Conclusions Our findings identified modifiable factors such as dealing with psychological issues and lack of experience in caring that negatively influenced the QoL of family caregivers. These factors are potential targets for intervention strategies. Education and intervention programs focusing on dealing with psychological problems in cancer care might improve the QoL of both patients and their families. Copyright © 2014 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background Systematic pain registration and assessment with a visual analog scale ( VAS) or numeric rating scale ( NRS) at each visit are key recommendations in one of the most recent guidelines on cancer pain management. It is unclear whether this recommendation is applied. Objectives The aim was to explore registration of pain in medical records of patients visiting the medical oncology outpatient clinic. Methods In a multicenter study in six Dutch hospitals, data were extracted from medical records of 380 outpatients with cancer. Data of the first three visits at the outpatient clinic were studied. Descriptive statistics were conducted. Results In 23% of all 987 visits at the outpatient clinic, pain or absence of pain was registered, and in an additional 15%, a nonspecific symptom description was given. Regarding all other visits, (62%) pain or absence of pain was not documented at all. Pain measurement using a VAS or NRS was documented in only one visit. Pain was more often registered in medical records of patients with metastasis, as well as in those of patients with urogenital tumors. Conclusion Pain in medical oncology outpatients is not systematically registered in their medical records. With one exception, pain was not registered with a VAS or NRS. Yet, registration and assessment of pain to monitor pain are essential to evaluate and adapt pain treatment over time. Pain registration has not improved since 2001 and therefore implementing the recommendations regarding systematic monitoring of pain is needed. [ABSTRACT FROM AUTHOR]

Objective More than 50% of patients with cancer experience pain. Patient empowerment has been highlighted as central to success in pain management. Up to now, no clear model for this patient group exists, yet several strategies to empower patients have been used in clinical practice. This review examines how empowerment or related concepts have been described in relation to pain management in patients with cancer. With the help of a conceptual model, recommendations for clinical practice are provided. Methods An integrative review was conducted, using the databases PubMed, CINAHL and PsycINFO. We evaluated papers discussing empowerment or related concepts in relation to pain management in patients with cancer. We analyzed the term 'empowerment' semantically. Results From a total of 5984 identified papers, 34 were included for analysis. Empowerment has been described with the concepts self-efficacy, active patient participation, increasing abilities, and control of life. Most papers focus on pain treatment induced by the professional caregiver or on the active involvement of the patient, and not on the combination of both. The following elements of empowerment could be discriminated: role of the patient, role of the professional, resources, self-efficacy, active coping, and shared decision making. Conclusions On the basis of these findings, we propose a conceptual model to empower patients in controlling cancer pain. We recommend focusing on pain treatment given by the professional, on the active involvement of the patient, and on the interaction of both. Our model might also be useful for other patient groups or specific contexts, especially in symptom management. Copyright © 2014 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background: Large numbers of vulnerable patients are in need of palliative cancer and dementia care. However, a wide gap exists between the knowledge of best practices in palliative care and their use in everyday clinical practice. As part of a European policy improvement program, quality indicators(QIs) have been developed to monitor and improve the organisation of palliative care for patients with cancer and those with dementia in various settings in different European countries. Method: A multidisciplinary, international panel of professionals participated in a modified RAND Delphi procedure to compose a set of palliative care QIs based on existing sets of QIs on the organisation of palliative care. Panellists participated in three written rounds, one feedback round and one meeting. The panel's median votes were used to identify the final set of QIs. Results: The Delphi procedure resulted in 23 useful QIs. These QIs represent key elements of the organisation of good clinical practice, such as the availability of palliative care teams, the availability of special facilities to provide palliative care for patients and their relatives, and the presence of educational interventions for professionals. The final set also includes QIs that are related to the process of palliative care, such as documentation of pain and other symptoms, communication with patients in need of palliative care and their relatives, and end-of-life decisions. Conclusion: International experts selected a set of 23 QIs for the organisation of palliative care. Although we particularly focused on the organisation of cancer and dementia palliative care, most QIs are generic and are applicable for other types of diseases as well. [ABSTRACT FROM AUTHOR]

Background There is a wide gap between knowledge about palliative care and its application in everyday clinical practice, affecting many patients in our ageing population. However, changing health care practice is a complex and challenging process. Therefore, the EU funded IMplementation of quality indicators in PAlliative Care sTudy (IMPACT) project aims to develop optimal implementation strategies to improve the organization of palliative care for people with cancer or with dementia in Europe. Methods and design The organization of palliative care in Europe will be mapped to develop and prepare strategies to improve it, and an overview of barriers and incentives regarding successful organizational changes in palliative care will be undertaken. A pre-test with a set of quality indicators (QIs), developed within the project, will be used to identify aspects of the organization of palliative care requiring change in hospitals, nursing homes, hospices, and primary care in five European countries. Based on the results of the pre-test, each setting will be invited to prioritise and improve aspects of their organization that appeared weak. The improvement objective they choose will be tailored to national and setting-specific barriers. Finally, a post-test with the same QIs will determine the effectiveness of the strategies used. An extensive process analysis will be conducted throughout the entire study. Discussion It is expected that the IMPACT project will provide professionals and policy makers useful tools to facilitate effective implementation of high-quality palliative cancer and dementia care in different settings in Europe. [ABSTRACT FROM AUTHOR]

Objectives: There is a growing consensus worldwide that palliative care needs to be both more inclusive of conditions other than cancer and to improve. This paper explores some common challenges currently faced by professionals providing palliative care for patients with either cancer or dementia across five countries. Method: One focus group (n = 7) and 67 interviews were conducted in 2012 across five countries: England, Germany, Italy, the Netherlands and Norway, with professionals from dementia, cancer and palliative care settings. Results: The interviews revealed five common challenges faced across the five countries: communication difficulties (between services; and between professionals, and patients and their families); the variable extent of structural/functional integration of services; the difficulties in funding of palliative care services; problematic processes of care (boundaries, definitions, knowledge, skills and inclusiveness) and, finally, time constraints. Conclusion: These are not problems distinct to palliative care, but they may have different origins and explanations compared to other areas of health care. This paper explored deeper themes hidden behind a discourse about barriers and facilitators to improving care. [ABSTRACT FROM AUTHOR]

Purpose: In the legal performance of the euthanasia procedure, unbearable suffering, one of the requirements of due care, is difficult to assess. Evaluation of the current knowledge of unbearable suffering is needed in the ongoing debate about the conditions on which EAS can be approved. Methods: Using an integrative literature review, we evaluated publications with definitions of suffering in general or in end-of-life situations and with descriptions of suffering in the context of a request for EAS. Data synthesis: From the 1482 citations identified, we included 55 publications: 20 articles about definitions of suffering and 35 empirical studies on suffering. We found no definition of unbearable suffering in the context of a request for EAS. Qualitative patient-centered studies revealed the most motivations, and the most motivations named by only one of the three parties involved. The studies of relatives were limited, mainly quantitative and retrospective. We found no studies that brought together the views of the patients, relatives, and healthcare professionals. Conclusions: There is no generally accepted definition of ‘unbearable suffering’ in the context of a request for EAS. On the basis of the articles reviewed, we propose the following conceptual definition: ‘Unbearable suffering in the context of a request for EAS is a profoundly personal experience of an actual or perceived impending threat to the integrity or life of the person, which has a significant duration and a central place in the person's mind’. Further patient-centered qualitative research into suffering is needed to clarify this definition. Copyright © 2009 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

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]