[Patient group-specific data sovereignty needs and acceptance of electronic health records]. / Patientengruppenspezifische Datenhoheitsbedürfnisse und Akzeptanz der elektronischen Patientenakte.

BACKGROUND AND AIM: People in Germany are very sensitive about their health data. The electronic health record (ePA) also raises questions about the patient's need for data sovereignty and acceptance. The possibility of selectively withholding data stored in the ePA from physicians who continue to treat the patient (opt-out) and the patient's prior knowledge of the ePA could influence the need for data sovereignty and acceptance of the ePA. The aim of this explorative study is to investigate these influences for three patient groups: "acute patients," "diabetes type 2 patients," and "palliative patients," as differences are expected between these groups. MATERIALS AND METHODS: From August to October 2019, a quantitative survey was conducted among 140 patients in the abovementioned groups. RESULTS: Of the respondents, 76.0% supported the selective opt-out option and stated that this would increase their willingness to participate in the ePA. Specifically, 81.1% of acute care patients, 80.6% of palliative care patients, and 65.6% of type 2 diabetes patients made this statement. Differences between groups were not significant. A general prior knowledge of the ePA was related to a higher need for data sovereignty - 43.2% of those who had never heard of the ePA rollout would occasionally hide their health data from other physicians, compared with 54.5% who knew of the rollout. DISCUSSION: Consideration of the data sovereignty needs of patients in the further establishment of the ePA is recommended. The selective opt-out option can contribute to acceptance. Knowledge of the ePA should be expanded, especially in the doctor-patient discussion, to enable an informed decision.

THE AVAILABILITY AND QUALITY OF PALLIATIVE AND HOSPICE CARE ENSURING IN THE COVID-19 PANDEMIC CONTEXT.

OBJECTIVE: The aim: To study the availability, quality and features of outpatient palliative and hospice care (PHC) to the population, including the elderly, in the COVID-19 pandemic context in order to optimize the PHC-mobile-teams service. PATIENTS AND METHODS: Materials and methods: Domestic and foreign literary sources; sociological research results. The research methods: biblio-semantic, sociological (questionnaires), systemic approach and systemic analysis, conventional medical-statistical methods. RESULTS: Results: Based on the analysis of international regulatory documents, domestic and foreign literary sources, the socio-medical importance of PHC is shown. In Ukraine, as in other countries, the number of elderly people is constantly growing, which leads to an increase in the PHC need. The results of the sociological survey determine: PHC needs in terms of age showed that in Ukraine almost 78.86% of people in need of PHC were aged 60 and over; the most popular (86.0% of responses) were PHC-mobile-teams and home-based services; about 80% of respondents said that pain limited their ability to work and affected on their psycho-emotional state and their quality of life; 86.3% of respondents reported an pain increased after COVID-19. The results of an online survey showed the effectiveness of PHC-mobile-teams service by improving the availability of PHC. CONCLUSION: Conclusions: To ensure high-quality PHC availability it should be integrated at the Health and Social Care Systems. According to the experience of the Kyiv PHC-mobile-teams service, it significantly increases PHC availability, which is especially important in the COVID-19 pandemic context.

"Truly holistic?" Differences in documenting physical and psychosocial needs and hope in Portuguese palliative patients.

OBJECTIVE: Palliative care (PC) aims to improve patients' and families' quality of life through an approach that relieves physical, psychosocial, and spiritual suffering, although the latter continues to be under-assessed and under-treated. This study aimed to describe the prevalence of physical, psychosocial, and hope assessments documented by a PC team in the first PC consultation. METHOD: The retrospective descriptive analysis of all first PC consultations registered in our anonymized database (December 2018-January 2020), searching for written documentation regarding (1) Edmonton Symptom Assessment Scale (ESAS) physical subscale (pain, tiredness, nausea, drowsiness, appetite, shortness of breath, constipation, insomnia, and well-being), (2) the single question "Are you depressed?" (SQD), (3) the question "Do you feel anxious?" (SQA), (4) feeling a burden, (5) hope-related concerns, (6) the dignity question (DQ), and (7) will to live (WtL). RESULTS: Of the 174 total of patients anonymously registered in our database, 141 PC home patients were considered for analysis; 63% were male, average age was 70 years, the majority had malignancies (82%), with a mean performance status of 52%. Evidence of written documentation was (1) ESAS pain (96%), tiredness (89%), nausea (89%), drowsiness (79%), appetite (89%), shortness of breath (82%), constipation (74%), insomnia (72%), and well-being (52%); (2) the SQD (39%); (3) the SQA (11%); (4) burden (26%); (5) hope (11%); (6) the DQ (33%); and (7) WtL (33%).Significant differences were found between the frequencies of all documented items of the ESAS physical subscale (29%), and all documented psychosocial items (SQD + SQA + burden + DQ) (1%), hope (11%), and WtL (33%) (p = 0.0000; p = 0.0005; p = 0.0181, respectively). SIGNIFICANCE OF RESULTS: There were differences between documentation of psychosocial, hope, and physical assessments after the first PC consultation, with the latter being much more frequent. Further research using multicenter data is now required to help identify barriers in assessing and documenting non-physical domains of end-of-life experience.

The desire for death in Portuguese home-care palliative patients: Retrospective analysis of the prevalence and associated factors.

OBJECTIVE: Desire for death (DfD) is a complex and multifactorial dimension of end-of-life experience. We aimed to evaluate the prevalence of DfD and its associations, arising within the setting of a tertiary home-based palliative care (PC) unit. METHOD: Retrospective analysis of all DfD entries registered in our anonymized database from October 2018 to April 2020. RESULTS: Of the 163 patients anonymously registered in our database, 122 met entry criteria; 52% were male, the average age was 69 years old; 85% had malignancies, with a mean performance status (PPS) of 56%. The prevalence of DfD was 20%. No statistical differences were observed between patients with and without DfD regarding sex, age, marital status, religion, social support, prior PC or psychological follow-up, type of diagnosis, presence of advanced directives/living will, time since diagnosis and PC team's follow-up time. Statistically significant associations were found between higher PPS scores and DfD (OR = 0.96; 95% confidence interval (CI) [0.93-0.99]); Edmonton Symptom Assessment Scale scores for drowsiness (OR = 4.05; 95% CI [1.42-11.57]), shortness of breath (OR = 3.35; 95% CI [1.09-10.31]), well-being (OR = 7.64; 95% CI [1.63-35.81]). DfD was associated with being depressed (OR = 19.24; 95% CI [3.09-+inf]); feeling anxious (OR = 11.11; 95% CI [2.51-49.29]); HADS anxiety subscale ≥11 (OR = 25.0; 95% CI [2.10-298.29]); will-to-live (OR = 39.53; 95% CI [4.85-321.96]). Patients feeling a burden were more likely to desire death (OR = 14.67; 95% CI [1.85-116.17]), as well as those who were not adapted to the disease (OR = 4.08; 95% CI [1.30-12.84]). In multivariate regression analyses predicting DfD, three independent factors emerged: higher PPS scores were associated with no DfD (aOR = 0.95; 95% CI [0.91-0.99]), while the sense of being a burden (aOR = 12.82; 95% CI [1.31-125.16]) and worse well-being (aOR = 7.72; 95% CI [1.26-47.38]) predicted DfD. SIGNIFICANCE OF RESULTS: Prevalence of DfD was 20% and consistent with previous Portuguese evidence on DfD in PC inpatients. Both physical and psychosocial factors contribute to a stronger DfD.

Professional postgraduate training of family doctors - an important part and condition of the optimal paliative and hospise care system implementation in Ukraine.

OBJECTIVE: The aim: To substantiate measures of optimization of the system of postgraduate training of GPs-Family Doctors (GP-FDs) on providing palliative and hospice care (PHC) in outpatient settings. PATIENTS AND METHODS: Materials and methods: Regulatory documents of Ukraine and International Professional Organizations; domestic and foreign literary sources; official statistics data; results of sociological research. The research methods were used: biblio-semantic, sociological (questionnaires), systemic approach and systemic analysis, and conventional medicalstatistical methods. RESULTS: Results: Based on the analysis of regulatory documents, the socio-medical importance of PHC and the importance of GP-FDs on PHC are shown. The results of the sociological survey determine: the estimated needs for PHC in Ukraine; insufficient number of inpatient beds for palliative patients (PPs); the absence of a PHC-mobile-teams service, which necessitates the involvement of GP-FDs for PHC at home. The results of the survey indicate an insufficient level of knowledge and an urgent need for special PHC education of GP-FDs. CONCLUSION: Conclusions: Multidisciplinary professional training for GP-FDs is of great importance for creating a PHC System. This will allow GP-FDs, together with social workers, NGOs to provide comprehensive PHC to PPs and their families, including medical, psychological, social and spiritual components.

Alteration of drug-metabolizing enzyme activity in palliative care patients: Microdosed assessment of cytochrome P450 3A.

BACKGROUND: Cytochrome P450 3A is the most relevant drug-metabolizing enzyme in humans as it is involved in the elimination of 50% of marketed drugs. Nothing is known about the activity of cytochrome P450 3A in palliative care patients who have complicated symptoms often associated with a terminal illness. AIM: In order to improve drug dosing in end-of-life care and to avoid drug interactions, cytochrome P450 3A activity was determined in patients of a palliative care unit under real-life clinical conditions. DESIGN: As midazolam is an established marker substance for cytochrome P450 3A activity, this single-arm prospective trial was designed to obtain a 4-h pharmacokinetic profile of midazolam after oral administration of a 10-µg dose from each enrolled patient. Plasma concentrations of midazolam and its primary metabolite 1'-hydroxy-midazolam were quantified by mass spectrometry techniques. Cytochrome P450 3A activity was calculated as partial metabolic clearance from a limited sampling area under the curve. All other drugs taken by the participating patients were considered, as well as recent blood test results and patients' diagnoses. The trial was registered at German Clinical Trials Register ( www.drks.de ): DRKS00011753. SETTING/PARTICIPANTS: The trial was carried out at a university palliative care unit under real-life clinical conditions. Every patient admitted to the ward was screened for possible participation, independent of the individual performance status. RESULTS: Partial metabolic clearance of midazolam in palliative care patients was 31.7 ± 32.1 L/h. This was a highly significant 40% reduction (p < 0.0001) in comparison with the cytochrome P450 3A activity of healthy subjects. CONCLUSION: Dosing of cytochrome P450 3A substrate drugs (e.g. macrolide antibiotics, benzodiazepines, calcium channel blockers) needs to be adjusted in palliative care patients; otherwise, escalation of debilitating symptoms due to drug interactions might occur.

"All of a sudden, a lot less still makes it worthwhile to be alive:" Palliative care patients' views on life.

OBJECTIVE: We aimed to elucidate the views on life as narrated by patients in palliative care (PC) to find out what patients deem to be essential in their life, whether something has changed concerning their view of life in light of the disease, and whether interviewees would like to give others something to take with them. METHOD: Data were collected from narrative audio and video interviews with 18 inpatients in a specialized PC unit. Interviews were recorded and transcribed verbatim and analyzed using qualitative content analysis applying MAXQDA software. CDs and DVDs with recorded interviews were provided to patients. RESULT: Eighteen interviews were analyzed: 11 audio and 7 video recordings. The age range was 41-80 years. Patients reported on changes in their views on life. Despite it being a complex and painful process, patients still gave examples of benefits experienced during their illness trajectory. Patients identified resources and coping strategies such as meaningful contacts with close others and mindfulness. Shifts have occurred in terms of taking more time for themselves, enjoying the moment, being more calm, and spending more time with family and friends. What patients wanted to pass on to others was to pay attention to the needs of both the self and the others, shape your life individually, confront yourself early with issues of death and dying, and care for your fellow human beings. Patients and relatives valued the opportunity to keep their interview as a CD/DVD. SIGNIFICANCE OF RESULTS: Results support the idea that many people facing terminal illness continue to focus on living and remain within their biographies and the contexts of their lives, even if their functional status declines. Patients and relatives appreciated that interviews were provided as kind of a legacy. Yet, more robust research is needed to decide whether such interviews yield any therapeutic effect.

Holistic management of malignant wounds in palliative patients.

Malignant wounds are a complication of cancer, and usually occur in those individuals with advanced disease. When healing ceases to be the goal, treatment is centred around symptom control and improving quality of life. Caring for individuals with malignant wounds presents challenges for patients, their families and nurses alike. This article discusses the holistic management of malignant wounds, with an emphasis on the control of both physical and psychosocial symptoms of wound management, as well as the impact that this may have on all those involved. Common physical symptoms of malignant wounds include malodour, bleeding, pain, exudate and pruritis. Psychosocial symptoms may result in social isolation and depression. All these symptoms have a huge impact, not only on patients and their families, but also on healthcare professionals both during and after care. Managing these symptoms requires a multidisciplinary approach to facilitate the best possible outcomes for patients and their caregivers.

Development and evaluation of the Dignity Talk question framework for palliative patients and their families: A mixed-methods study.

BACKGROUND: Effective patient-family communication can reduce patients' psychosocial distress and relieve family members' current suffering and their subsequent grief. However, terminally ill patients and their family members often experience great difficulty in communicating their true feelings, concerns, and needs to each other. AIM: To develop a novel means of facilitating meaningful conversations for palliative patients and family members, coined Dignity Talk, explore anticipated benefits and challenges of using Dignity Talk, and solicit suggestions for protocol improvement. DESIGN: A convergent parallel mixed-methods design. Dignity Talk, a self-administered question list, was designed to prompt end-of-life conversations, adapted from the Dignity Therapy question framework. Participants were surveyed to evaluate the Dignity Talk question framework. Data were analyzed using qualitative and quantitative methods. SETTING/PARTICIPANTS: A total of 20 palliative patients, 20 family members, and 34 healthcare providers were recruited from two inpatient palliative care units in Winnipeg, Canada. RESULTS: Most Dignity Talk questions were endorsed by the majority of patients and families (>70%). Dignity Talk was revised to be convenient and flexible to use, broadly accessible, clearly stated, and sensitively worded. Participants felt Dignity Talk would be valuable in promoting conversations, enhancing family connections and relationships, enhancing patient sense of value and dignity, promoting effective interaction, and attending to unfinished business. Participants suggested that patients and family members be given latitude to respond only to questions that are meaningful to them and within their emotional capacity to broach. CONCLUSION: Dignity Talk may provide a gentle means of facilitating important end-of-life conversations.

A scoping review of mobile apps for use with palliative patients in the context of home care.

CONTEXT: Progress in mobile technology, especially the use of applications for mobile devices, can support the process of monitoring patients in palliative care (therapeutics), controlling symptoms, or providing self-care guidelines for the user, namely patients or caregivers. OBJECTIVES: To map the available knowledge regarding the use of applications for mobile devices to support adult patients in palliative care at home. METHODS: Literature review, based on the Joanna Briggs Institute model(s) for Scoping Review. All articles published until October 27, 2022, were identified in the electronic databases MEDLINE®, CINAHL®, Psychology and Behavioral Sciences Collection, Cochrane Library, and Scopus using the respective Boolean logical operators and key terms. RESULTS: A total of 634 articles were identified, and a final 24 studies were included. Eleven mobile device applications were identified, demonstrating different aspects of design, use, and technological development. These have incorporated the most recent technology in their functionalities. CONCLUSION: Mobile applications can be considered a viable and effective means of monitoring patients in palliative care. However, these applications must go beyond the academic scenario in which they were developed and move toward widespread use in practice, allowing the evaluation of the impact of this "new" intervention modality to understand their effectiveness and the application of best practices.

A systematic review of interventional studies on oral care of palliative patients.

BACKGROUND: To study and review the effectiveness of oral care interventions for palliative patients for amelioration of clinical conditions affecting oral cavity. METHODS: Following PRISMA standard, a systematic evaluation of articles published between 2000 and 2021 was undertaken utilising five databases on interventions studies. This comprehensive review consists of randomised controlled trials (RCTs) and specific types of non-randomised studies (NRS) examining oral care interventions for palliative patients. Three independent authors screened search records, identified related studies, extracted data and evaluated risk of bias. The key findings of each study were summarised according to the research questions and data that generated during the data extraction procedure. RESULTS: Out of the 67 identified studies, seven were included in this review (five RCTs and two NRSs) involving head-and-neck cancer, oral cancer, oral mucositis, xerostomia and individuals with malignant disease. Interventions studied were: Ziziphus honey, artificial saliva, CAM2028-Benzydamine, morphine mouthwash, ketamine mouthwash, bethanechol tablets and caphosol with regular oral-care. The durations of interventions in the included studies were largely short-term (six weeks or less). Overall, six studies revealed good results in support of the intervention, with magnitudes of effect ranging from 13.2-10,110.0%. However, just four researches found significant changes, with magnitudes of effect ranging from 50.0-10,110.0%. Although two of the trials have not revealed significant changes in the results, investigations have indicated a reduction in oral conditions in the group with interventions. Only one trial has not indicated an improvement in oral conditions in the groups which received the interventions. DISCUSSION: By assessing the efficacy of available oral hygiene interventions for palliative patients, this systematic review can help palliative team finds the viable strategies to apply in controlling oral problems among hospice patients. Even though only four of the seven research found a statistically significant difference, most studies found great effectiveness in favour of intervention.

Prevalence and Factors Associated With Will-to-Live in Patients With Advanced Disease: Results From a Portuguese Retrospective Study.

CONTEXT: Will-to-live (WtL) is a complex and multifactorial dimension of end-of-life experience. Health care decisions on assisted suicide and euthanasia are rarely based on WtL evidence-based discussions. OBJECTIVES: To inform the debate, we aimed to evaluate the prevalence of WtL and its associations within a tertiary home-based palliative care unit. METHODS: Retrospective analysis of all WtL entries registered in our anonymized clinical registry, from October 2018 to September 2020. RESULTS: One-hundred and twelve patients were included: 53% were male, average age was 66 years old; 88% had malignancies, with a mean performance status of 55%. Mean for WtL of was 3.26 (SD = 3.87) with a prevalence of 60.7% strong, 8.9% moderate and 30.4% weak WtL. Weaker WtL was observed among patients who were not well adapted to their disease (P = .001), felt a burden to others (P< .001), were depressed (P = .001), anxious (P< .001) and endorsed a desire for death (P< .001). Weaker WtL was associated with pain (P = .002) and lower well-being (P = .001). Results from the logistic regression model found that the adaptation to disease emerged as a significant predictor of WtL (P = .025), and burden to others remained marginally significant (P = .087). CONCLUSION: The factors associated with lower WtL scores are consistent with previous studies, indicating that these patients experience a myriad of physical, psychological and existential symptoms requiring an interdisciplinary palliative care approach. These factors pertaining to WtL should be made known, as Portugal considers how to navigate death-hastening legislation.

Individual Meaning-Centered Psychotherapy for palliative cancer patients in Lithuania. A case report.

Patients with oncological diseases, especially palliative care patients, suffer from physical and psychological difficulties. The quality of life of such patients is bad, they do not have purpose to live and they feel anxiety and distress. In 1959 Victor Frankl wrote the book Man's Search for Meaning in which he stated that the driving force of human life lay in the ability to discern the meaning of faith and spirituality. Inspired by Frankl's ideas, the American psychiatrist William Breitbart with colleagues have developed both an individual and group model of Meaning-Centered Psychotherapy. Studies show that this therapy helps patients to cope with distress, to discover the meaning of life in palliative care patients, and to find the strength to look at life positively; also, it relieves the symptoms of illness. The Meaning-Centered Psychotherapy is integrated in various countries and has recently been initiated for palliative patients in Lithuania. The individual Meaning-Centered Psychotherapy was used in the case reviewed in this paper.

The Association between Malnutrition and Pressure Ulcers in Elderly in Long-Term Care Facility.

BACKGROUND: Malnutrition is common in elderly and is a risk factor for pressure ulcers. AIM: The aim of the present study was to determine the prevalence of malnutrition in geriatric and palliative patients hospitalised in long-term care facility, and to examine the influence of nutritional status on the prevalence of pressure ulcers (PU). MATERIAL AND METHODS: Descriptive, observational and cross-sectional study including 2099 patients admitted to the Hospital during a 24 month period (January 2013 to December 2014). We recorded: demographic data, body mass index (BMI), Braden score, laboratory parameters of interest (albumin, total protein, RBC count, haemoglobin and iron levels) and presence or absence of malnutrition and pressure ulcers. RESULTS: The pressure ulcer prevalence was 12.9% (256 out of 2099). Based on the BMI classification, 61.7% of patients had a good nutritional status, 27.4% were undernourished, and 2.1% were considered malnourished. Nutritional status was statistically significantly different between patients with and without PU (p < 0.0001). This study also showed that hypoproteinemia, hypoalbuminemia, low RBC was positively associated with PU prevalence. CONCLUSION: The results highlight the impact of nutritional status on the prevalence of pressure ulcers in hospitalised geriatric and palliative population. It is of paramount importance to correctly evaluate the presence of malnutrition in patients at risk of pressure ulcers.