Background:
Palliative care is an important component of health care in pandemics, contributing to symptom control, psychological support, and supporting triage and complex decision making.
Aim:
To ...examine preparedness for, and impact of, the COVID-19 pandemic on hospices in Italy to inform the response in other countries.
Design:
Cross-sectional telephone survey, in March 2020.
Setting:
Italian hospices, purposively sampled according to COVID-19 regional prevalence categorised as high (>25), medium (15–25) and low prevalence (<15) COVID-19 cases per 100,000 inhabitants. A brief questionnaire was developed to guide the interviews. Analysis was descriptive.
Results:
Seven high, five medium and four low prevalence hospices provided data. Two high prevalence hospices had experienced COVID-19 cases among both patients and staff. All hospices had implemented policy changes, and several had rapidly implemented changes in practice including transfer of staff from inpatient to community settings, change in admission criteria and daily telephone support for families. Concerns included scarcity of personal protective equipment, a lack of hospice-specific guidance on COVID-19, anxiety about needing to care for children and other relatives, and poor integration of palliative care in the acute planning response.
Conclusion:
The hospice sector is capable of responding flexibly and rapidly to the COVID-19 pandemic. Governments must urgently recognise the essential contribution of hospice and palliative care to the COVID-19 pandemic and ensure these services are integrated into the health care system response. Availability of personal protective equipment and setting-specific guidance is essential. Hospices may also need to be proactive in connecting with the acute pandemic response.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
Globally, the number of people affected by coronavirus disease 2019 (COVID-19) is rapidly increasing. In most (>80%), the illness is relatively mild and can be self-managed out of hospital. However, ...in about 20% the illness causes respiratory compromise severe enough to require hospital admission 1. Patients with severe and critical disease need full active treatment. This may include oxygen for hypoxaemia and ventilatory support, along with optimal management of complications,
e.g.
super-imposed bacterial infection, and any underlying co-morbidities,
e.g.
chronic obstructive pulmonary disease, congestive heart failure. To date, no antiviral agent has shown to be effective in treating the disease 2.
Outcome measurement is fundamental to assess needs and priority of care in palliative care settings. The Integrated Palliative care Outcome Scale (IPOS) was developed from earlier versions of this ...tool. Its use is encouraged to ameliorate the assessment of individual outcomes in palliative care settings. This study aimed to translate and culturally adapt IPOS into Italian, and explore its face and content validity.
After forward-backward translation, a qualitative study explored the views of and cognitive processes used by respondents. We conducted individual semi structured interviews with 21 patients admitted to two palliative care services, from hospitals, hospices and the community, and focus groups with 12 professionals working in multidisciplinary palliative care teams and used thematic analysis. The results were integrated in a final audit, including the project team and the original POS developers, to refine the final format of the tool.
We conducted 21 face to face cognitive interviews with patients, and 2 focus groups with 14 professionals. Patients and professionals felt content and format of IPOS appropriate and feasible, and not burdensome. Some layout problems were raised leading to adaptation. Main issues regarded: clarifying the meaning of choices and some cultural interpretation of some questions and response options and interpretation of some instructions. We proposed using some new terms as more appropriate and comprehensive in our context, such as replacing the term "family" with "dear ones". The items that appeared unchanged from the previously validated Italian POS were left unmodified to maintain coherence.
The Italian IPOS, in its four versions directed to patients or staff and with a recall period of 3 or 7 days, has face and content validity for use in clinical settings and is ready for further psychometric and clinimetric validation.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Background:
Outcome measurement plays an increasing role in improving the quality, effectiveness, efficiency and availability of palliative care.
Aim:
To provide expert recommendations on outcome ...measurement in palliative care in clinical practice and research.
Methods:
Developed by a European Association for Palliative Care Task Force, based on literature searches, international expert workshop, development of outcome measurement guidance and international online survey. A subgroup drafted a first version and circulated it twice to the task force. The preliminary final version was circulated to wider expert panel and 28 international experts across 20 European Association for Palliative Care member associations and the European Association for Palliative Care Board of Directors and revised according to their feedback. The final version was approved by the European Association for Palliative Care Board for adoption as an official European Association for Palliative Care position paper.
Results:
In all, 12 recommendations are proposed covering key parameters of measures, adequate measures for the task, introduction of outcome measurement into practice, and national and international outcome comparisons and benchmarking. Compared to other recommendations, the White Paper covers similar aspects but focuses more on outcome measurement in clinical care and the wider policy impact of implementing outcome measurement in clinical palliative care. Patient-reported outcome measure feedback improves awareness of unmet need and allows professionals to act to address patients’ needs. However, barriers and facilitators have been identified when implementing outcome measurement in clinical care that should be addressed.
Conclusion:
The White Paper recommends the introduction of outcome measurement into practice and outcomes that allow for national and international comparisons. Outcome measurement is key to understanding different models of care across countries and, ultimately, patient outcome having controlled for differing patients characteristics.
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The general purpose for ethics consultations is to deliberate on issues on medical and scientific research and act towards the safeguard of the patient's rights and dignity. With the implementation ...of European Union (EU) Regulation 536/2014 on clinical trials and cost and time-optimization, the nature of consultations and the bodies they are carried out might be to some extent affected. Accordingly, we sought to gain an updated perspective on the current role and current practices of ethics consultations nationwide in both clinical and research settings.
The study was carried forth by a three-step mixed-method approach: i) review of policies/regulations for ethics committee (EC) nationwide; ii) a structured survey on ethics consultation activity completed by each EC during 2016; iii) incorporated into the third part, a qualitative assessment with a selected sample of 8 key-informants for a semi-structured interview, discussing EC history, the ethics consultation function, and the professional experience of consultants.
Review of the policies/regulations promoted by ECs showed that 72,6% (n = 69) of all the ECs (N = 95) being actually capable of providing ethics consultation service by policy. 71 ECs (74.7%) responded to the survey on ethics consultation requests; among them, 48 (67.6%) provided ethics consultations of which 23 (23/48) actually received requests for this service in the year 2016. Many ECs did not have a structured database in place to provide precise figures of requests received in the last year nor of their contents.
To date, ethics consultation in clinical and research practice is largely underappreciated and not well understood by users. The consultants themselves lack a comprehensive vision of work carried out in their field, and bioethics training programs to keep them updated. Despite clinical ethics consultation services should not necessarily be mandatory, following the recent EU Regulation on clinical trials, institutional ethics consultation bodies should be re-evaluated.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
This multicenter study investigates the efficacy of the guided disclosure protocol in promoting post-traumatic growth, through meaning reconstruction, in cancer patients after adjuvant chemotherapy. ...Participants will be randomized to guided disclosure protocol or to an active control condition. Both conditions consist of three 20-minute writing sessions. Experimental participants verbalize emotions, describe events, and reflect on trauma effects. Control participants write about their past week’s daily routine. Patients, blinded to treatment assignment, will complete questionnaires at pre-intervention, post-intervention, and 6-month follow-up. This study will improve knowledge concerning the effects of writing interventions on psychological health and well-being in cancer patients.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK, VSZLJ
Weight loss limits cancer therapy, quality of life and survival. Common diagnostic criteria and a framework for a classification system for cancer cachexia were recently agreed upon by international ...consensus. Specific assessment domains (stores, intake, catabolism and function) were proposed. The aim of this study is to validate this diagnostic criteria (two groups: model 1) and examine a four-group (model 2) classification system regarding these domains as well as survival.
Data from an international patient sample with advanced cancer (N = 1070) were analysed. In model 1, the diagnostic criteria for cancer cachexia weight loss/body mass index (BMI) were used. Model 2 classified patients into four groups 0-III, according to weight loss/BMI as a framework for cachexia stages. The cachexia domains, survival and sociodemographic/medical variables were compared across models.
Eight hundred and sixty-one patients were included. Model 1 consisted of 399 cachectic and 462 non-cachectic patients. Cachectic patients had significantly higher levels of inflammation, lower nutritional intake and performance status and shorter survival. In model 2, differences were not consistent; appetite loss did not differ between group III and IV, and performance status not between group 0 and I. Survival was shorter in group II and III compared with other groups. By adding other cachexia domains to the model, survival differences were demonstrated.
The diagnostic criteria based on weight loss and BMI distinguish between cachectic and non-cachectic patients concerning all domains (intake, catabolism and function) and is associated with survival. In order to guide cachexia treatment a four-group classification model needs additional domains to discriminate between cachexia stages.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Spirituality is particularly important for patients suffering from life-threatening illness. Despite research showing the benefits of spiritual assessment and care for terminally ill patients, their ...spiritual needs are rarely addressed in clinical practice. This study examined the factor structure and reliability of the Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp) in patients with advanced cancer. It also examined the clinical meaning and reference intervals of FACIT-Sp scores in cancer patients subgroups through a literature review.
A forward-backward translation procedure was adopted to develop the Italian version of the FACIT-Sp, which was administered to 150 terminally ill cancer patients. Exploratory factor analysis was used for construct validity, while Cronbach's α was used to assess the reliability of the scale.
This study replicates previous findings indicating that the FACIT-Sp distinguish well between features of meaning, peace, and faith. In addition, the internal consistency of the FACIT-Sp was acceptable. The literature review also showed that terminal cancer patients have the lowest scores on the Faith and Meaning subscales, whereas cancer survivors have the highest scores on Faith.
The Italian version of the FACIT-Sp has good construct validity and acceptable reliability. Therefore, it can be used as a tool to assess spiritual well-being in Italian terminally ill cancer patients. This study provides reference intervals of FACIT-Sp scores in newly diagnosed cancer patients, cancer survivors, and terminally ill cancer patients and further highlights the clinical meaning of such detailed assessment.
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IZUM, KILJ, NUK, PILJ, PNG, SAZU, UL, UM, UPUK
Abstract The number of people in their last years of life with advanced chronic conditions, palliative care needs, and limited life prognosis due to different causes including multi-morbidity, organ ...failure, frailty, dementia, and cancer is rising. Such people represent more than 1% of the population. They are present in all care settings, cause around 75% of mortality, and may account for up to one-third of total national health system spend. The response to their needs is usually late and largely based around institutional palliative care focused on cancer. There is a great need to identify these patients and integrate an early palliative approach according to their individual needs in all settings, as suggested by the World Health Organization. Several tools have recently been developed in different European regions to identify patients with chronic conditions who might benefit from palliative care. Similarly, several models of integrated palliative care have been developed, some with a public health approach to promote access to all in need. We describe the characteristics of these initiatives and suggest how to develop a comprehensive and integrated palliative approach in primary and hospital care and to design public health and community-oriented practices to assess and respond to the needs in the whole population. Additionally, we report ethical challenges and prognostic issues raised and emphasize the need for research to test the various tools and models to generate evidence about the benefits of these approaches to patients, their families, and to the health system.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Abstract Objectives To describe the nursing and medical interventions performed in the last 48 hours of life and the quality of dying of patients dying in acute geriatric hospital wards. Methods ...Cross-sectional descriptive study between October 1, 2012 and September 30, 2013. Twenty-three acute geriatric wards in 13 hospitals in Flanders, Belgium. Patients hospitalized for more than 48 hours before dying in the participating wards. Structured after-death questionnaires, filled out by the nurse, the physician, and the family carer most involved in end-of-life care. Main outcome measures were several nursing and medical interventions reported to be performed in the last 48 hours of life and the quality of dying. Results Of 993 patients, we included 338 (mean age 85.7 years; 173 women). Almost 58% had dementia and nearly half were unable to communicate in the last 48 hours of their life. The most frequently continued or started nursing and medical interventions in the last 48 hours of life were measuring temperature (91.6%), repositioning (83.3%), washing (89.5%), oxygen therapy (49.7%), and intravenous fluids and nutrition (30%). Shortness of breath, lack of serenity, lack of peace, and lack of calm were symptoms reported most frequently by nurses and family carers. Conclusion Many nursing and medical interventions are continued or started in the last hours of a patient's life, which may not always be in their best interests. Furthermore, patients dying in acute geriatric wards are often affected by several symptoms.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
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