Integrating Palliative Care Into the Management of Genitourinary Malignancies.

Palliative care (PC) plays a critical role in managing the difficulties associated with genitourinary malignancies. Its primary aim is to improve the overall health of patients, provide support to both patients and their caregivers, and help individuals to navigate the complex decisions about treatment and end-of-life care. PC takes a holistic approach to patient care, recognizing that genitourinary malignancies affect multiple aspects of a person's life. By addressing physical, emotional, social, and spiritual needs, PC aims to provide comprehensive support that is consistent with the patient's values and preferences. The goal is to optimize comfort, minimize distress, and enhance the patient's quality of life throughout the course of the illness. PC is not a one-off intervention, but an ongoing source of support. This article aims to provide a thorough overview of the critical elements involved in addressing the challenges posed by genitourinary cancers, emphasizing the importance of palliative interventions. We will highlight the multifaceted aspects of care and explore strategies to optimize the overall well-being of patients throughout the course of treatment for genitourinary malignancies.

Life outcomes after paediatric kidney transplantation: a qualitative, biographical study in long-term survivors.

OBJECTIVE: The objective of this study was to analyse the narrative life stories of children with end-stage kidney disease (ESKD) and their families to determine how health professionals can effectively support these children to achieve better life outcomes. DESIGN: Qualitative narrative biographic study. SETTING: We invited every long-term survivor of paediatric kidney transplants and their families at the Medical University of Vienna between 2008 and 2013 to participate in this study. PARTICIPANTS: Nineteen patients (women: n=8, 42%) and 34 family members (women: n=22, 65%) were interviewed. The patients had a mean age of 7.6 (SD±5.6) years at the time of transplantation and 22.2 (SD±5.4) at the time of interview. MAIN OUTCOMES MEASURES: A qualitative narrative biographical analysis was combined with computational structured topic models using the Latent Dirichlet Allocation. RESULTS: The overarching finding was the desire for normality in daily life in long-term survivors and their families but with different perceptions of what normality looks like and predominance of this aspect evolving. Different strategies were used by patients (focused on their advancement) and caregivers (normality for all family members). Siblings played a major role in supporting survivors' social inclusion. CONCLUSIONS: The strong desire for normality confirms recent findings of the Standardised Outcomes in Nephrology Group initiative, which proposes survival and life participation as core outcomes in children with chronic kidney disease. Our study should be a starting point for an international effort to identify typologies and stratified interventions for children with ESKD and their families, particularly siblings.

Effectiveness of cloth face masks to prevent viral spread: a meta-analysis.

BACKGROUND: The effectiveness of cloth face masks to prevent viral spread has not yet been conclusively established. In this meta-analysis, we evaluate their effectiveness in comparison to standard medical/surgical and N95-typed masks against viral spread. METHODS: We identified literature through a systematic search in three databases and meta-analytically synthesized relevant studies by means of random-effects as well as multilevel modelling. RESULTS: Twelve studies comprising k = 28 effect sizes (N = 338) were included. Medical/surgical and N95-typed masks outperformed cloth masks, yielding a large effect (g = 1.40). This effect remained robust when data were grouped according to comparisons with medical/surgical masks (g = 1.25) and N95-typed masks (g = 1.29). However, effects were differentiated according to mask fit, indicating reversals of signs when cloth mask effects were compared with ill-fitting medical/surgical and N95-typed masks (gs = -12.50 and - 10.90, respectively). CONCLUSIONS: Cloth face masks were found to have significantly poorer filtering performance than medical/surgical masks and N95 masks, but only if non-cloth masks were properly fitted. Our results illustrate the necessity of using well-fitting medical/surgical or N95-typed masks to prevent viral spread, although some allowance should be made in circumstances where higher compliance with cloth mask mandates are expected.

Routine laboratory parameters to support decision on parenteral nutrition in palliative care.

Introduction: Parenteral nutrition (PN) is widely used in palliative care (PC), but there is limited evidence to support its use at the end of life (EOL). This aim of this was to investigate the relationship between routine laboratory parameters and survival in patients receiving PN, and to develop a decision tree model to support clinicians decide whether to start or forgo PN. Methods: The laboratory parameters of 113 patients with advanced diseases who were admitted to a specialized palliative care unit (PCU) were analyzed at two points in time: T0 = before PN, T1 = two weeks after initiation of PN. Univariate Mann-Whitney U-tests and multivariate linear regression models, as well as a decision tree analysis were computed; all in relation to survival time. Results: The final regression model was significant with p = 0.001 (adjusted R2 = 0.15) and included two predictors for survival time after PN initiation: the CRP/albumin ratio and urea at T1 (ps = 0.019). Decision tree analysis revealed three important predictors for classification of survival time after PN initiation: CRP, urea, and LDH (all at T0). Discussion: The decision tree model may help to identify patients likely to benefit from PN, thus supporting the clinical decision whether or not to start PN.

Prevalence of pain and its association with symptoms of post-traumatic stress disorder, depression, anxiety and distress in 846 cancer patients: A cross sectional study.

OBJECTIVE: Pain depicts a severe physical symptom but its relationship to mental health problems is not well studied in cancer patients. The aim of this study was to investigate the prevalence of pain and its correlation with symptoms of post-traumatic stress disorder (PTSD), depression, anxiety and psychological distress in a large sample of cancer patients. METHODS: From 2010 to 2019, cancer patients who received outpatient treatment at the Medical University of Vienna were assessed with the Post-Traumatic Symptom Scale (PTSS-10) and the Hospital Anxiety and Depression Scales. A visual analogue scale was used to assess pain perception. For statistical analysis, linear regression models were applied to log-transformed data. RESULTS: Of the 846 cancer patients included in the study, 63.5% experienced pain (mild 43.5%, moderate 13.6%, severe 6.4%). About a third (31.2%) of the total sample presented with significant PTSD symptoms. Significant symptoms of depression, anxiety and distress were present in 13.9%, 15.1% and 25.3%, respectively. Women more often reported symptoms of PTSD, anxiety and distress. Pain scores were significantly related to symptoms of PTSD, depression and psychological distress (all with p < .001), but not to anxiety. CONCLUSIONS: Results show a high prevalence of experienced pain and indicate a clear association of elevated pain levels with psychiatric symptoms in oncological patients in a large Austrian sample. In order to decrease experienced pain and to enable better treatment of mental health problems in cancer patients, diagnostic procedures and interventions based on a biopsychosocial model need to be intensified.

The PERSONS score: A new tool for cancer patients' symptom assessment in simultaneous care and home care settings.

BACKGROUND: Scientific societies recommend early interaction between oncologic and supportive care, but there is still a lack of systematic evaluations regarding symptoms from the perspective of oncologists. PATIENTS AND METHODS: The aim of this prospective study was to evaluate the PERSONS score, in both "simultaneous care" and "supportive care" settings using the Edmonton Symptom Assessment Scale (ESAS) as a comparator. RESULTS: From November 2017 to April 2018, 67 and 110 consecutive patients were enrolled in outpatient and home care cohorts, respectively. The final study population comprised 163 patients. There were no significant changes over time in the total PERSONS scores and total ESAS scale. The intra-interviewer reliability (ICC2,1) and inter-interviewer reliability (ICC2,k) showed good reproducibility (test-retest) in each group of patients: 0.60 (0.49-0.70) and 0.82 (0.75-0.87), respectively, for the home care patients and 0.73 (0.62-0.81) and 0.89 (0.83-0.93), respectively, for the outpatient cohort. There were high correlations between PERSONS and ESAS, both at the baseline and final assessments. The mean PERSONS and ESAS scores between the home care patients and outpatients were not different at the baseline and final assessments. Receiver operating characteristics (ROC) curve for the PERSONS total score revealed good diagnostic ability. Area under the curve (AUC) was 0.825 and 0.805 for improvement and deterioration, respectively. CONCLUSIONS: The PERSONS score is an easy to apply tool for symptom assessment. Importantly, the PERSONS score showed high concordance with the established ESAS scale and, therefore, provides an alternative for everyday use in supportive care assessment.

The PERSONS score for symptoms assessment in simultaneous care setting: A pilot study.

One of the first steps to early integrate palliative care into oncology practice is a timely and efficient evaluation of symptoms (Bakitas et al., 2015; Davis et al., 2015; Temel et al., 2010). In a recent position paper, the Italian Association of Medical Oncology tells oncologists that they "must be able to prevent, recognize, measure, and treat all cancer-related symptoms" (Zagonel et al., 2017). Major international scientific societies such as the American Society of Clinical Oncology and the European Society of Medical Oncology have often defined the key role of symptoms evaluation and management to force the integration of palliative care into oncology (Davis et al., 2015; Ferrel et al., 2017). Nevertheless, a recent survey conducted by the Italian Association of Medical Oncology shows that only 20% of oncologists regularly uses valid tools to evaluate symptoms, 45% exclusively use them in the context of clinical trials, 30% use them only occasionally, and 5% never use them (Zagonel et al., 2016).

Demystification of palliative care: what palliative care teams don't want you to think about them.

There is robust data that palliative care is prolonging life while there are still prejudices towards this discipline that have to be demystified. Patients, relatives and caregivers benefit from the concept of early integration of palliative care and therefore, palliative care should not be mainly regarded as end-of-life care.

Establishing end-of-life boards for palliative care of patients with advanced diseases.

BACKGROUND: Interdisciplinary tumor board decisions improve the quality of oncological therapies, while no such boards exist for end-of-life (EOL) decisions. The aim of this study was to assess the willingness of hemato-oncological and palliative care professionals to develop and participate in EOL boards. An aim of an EOL board would be to establish an interdisciplinary and comprehensive care for the remaining lifetime of patients suffering from advanced incurable diseases. STUDY DESIGN: Staff from the interdisciplinary teams of all hemato-oncological and palliative care wards in Vienna were invited to anonymously participate in an online survey. RESULTS: 309 professionals responded. 91% respondents reported a need to establish an EOL board, 63% expressed their willingness to actively participate in an EOL board, and 25% were indecisive. Regarding patient presence, 50% voted for an EOL board in the presence of the patients, and 36% voted for an EOL board in the absence of the patients. 95% had the opinion that an EOL board could improve patient care in the last phase of life. 64% stated that the development of an EOL board would be worthwhile, while 28% did not see enough resources available at their institutions. Regarding the desired type of documentation, 61% voted for a centrally available EOL decision, and 31% supported an in-house-based documentation. 94% voted for the availability of an information folder about EOL care. CONCLUSION: The willingness of professionals to establish an EOL board was very high. Further steps should be taken to implement such boards to improve EOL care.

Use of Natural Family Planning (NFP) and Its Effect on Couple Relationships and Sexual Satisfaction: A Multi-Country Survey of NFP Users from US and Europe.

PURPOSE: Birth control is a persistent global health concern. Natural family planning (NFP) comprises methods to achieve or avoid pregnancy independent of mechanical or pharmacological intervention. The sympto-thermal method (STM) of NFP employs daily observation of cervical fluids and measurement of basal body temperature. This multi-country study was undertaken to describe the characteristics of STM users, understand their perceptions of NFP, and its perceived impact on relationships. METHODS AND RESULTS: Questionnaires for women and men were developed in German and translated to English, Polish, Italian, Czech, and Slovak by native speakers. A total of 2,560 respondents completed the online questionnaire (37.4% response). Participants were married (89%) and well educated, and their self-perceived financial status was described as "good" or "very good" by 65% of the respondents. Forty-seven percent had previously used contraceptives. Ninety-five percent of women and 55% of men said using NFP has helped them to know their body better. Large majorities of men (74%) and women (64%) felt NFP helped to improve their relationship while <10% felt use of NFP had harmed their relationship. Most women (53%) and men (63%) felt using NFP improved their sex life while 32% of women and 24% of men felt it was unchanged from before they used NFP. Seventy-five percent of women and 73% of men said they are either "satisfied" or "very satisfied" with their frequency of sexual intercourse. CONCLUSION: This survey demonstrates STM of NFP is a well-accepted approach to family planning across several Western cultures. It is consistently viewed as being beneficial to couples' self-knowledge, their relationship, and satisfaction with frequency of sexual intercourse.

What Makes a Good Palliative Care Physician? A Qualitative Study about the Patient's Expectations and Needs when Being Admitted to a Palliative Care Unit.

OBJECTIVE: The aims of the study were to examine a) patients' knowledge of palliative care, b) patients' expectations and needs when being admitted to a palliative care unit, and c) patient's concept of a good palliative care physician. METHODS: The study was based on a qualitative methodology, comprising 32 semistructured interviews with advanced cancer patients admitted to the palliative care unit of the Medical University of Vienna. Interviews were conducted with 20 patients during the first three days after admission to the unit and after one week, recorded digitally, and transcribed verbatim. Data were analyzed using NVivo 10 software, based on thematic analysis enhanced with grounded theory techniques. RESULTS: The results revealed four themes: (1) information about palliative care, (2) supportive care needs, (3) being treated in a palliative care unit, and (4) qualities required of palliative care physicians. The data showed that patients lack information about palliative care, that help in social concerns plays a central role in palliative care, and attentiveness as well as symptom management are important to patients. Patients desire a personal patient-physician relationship. The qualities of a good palliative care physician were honesty, the ability to listen, taking time, being experienced in their field, speaking the patient's language, being human, and being gentle. Patients experienced relief when being treated in a palliative care unit, perceived their care as an interdisciplinary activity, and felt that their burdensome symptoms were being attended to with emotional care. Negative perceptions included the overtly intense treatment. CONCLUSIONS: The results of the present study offer an insight into what patients expect from palliative care teams. Being aware of patient's needs will enable medical teams to improve professional and individualized care.

Psyche at the end of life: Psychiatric symptoms are prevalent in patients admitted to a palliative care unit.

OBJECTIVE: Our aim was to evaluate the frequency and treatment of psychiatric symptoms in patients at palliative care units (PCUs). METHOD: Patients admitted to one of five participating PCUs in Austria were included. The short version of the Patient Health Questionnaire (PHQ-D) was used to evaluate their mental health status. Pain intensity was rated on a numeric rating scale (NRS) from 0 to 10 by patients and physicians. Patients with a previously diagnosed psychiatric disorder were compared to those without or with newly diagnosed psychiatric symptoms, based on PHQ-D results. Pain and psychopharmacological medication were assessed. Opioid doses were converted into oral morphine equivalents (OMEs). RESULTS: Some 68 patients were included. Previously undetected psychiatric symptoms were identified in 38% (26 of 68), preexisting psychiatric comorbidities were evident in 25% (17), and no psychiatric symptoms were observed in 37% (25). Patients with a preexisting psychiatric comorbidity received antidepressants and benzodiazepines significantly more often than patients without or with previously undetected psychiatric symptoms (p < 0.001). Patient and physician median NRS ratings of pain intensity correlated significantly (p = 0.001). Median NRS rating showed no significant difference between patients with preexisting, previously undetected, or without psychiatric symptoms. OMEs did not differ significantly between preexisting, without, or previously undetected psychiatric symptoms. Patients with undetected and preexisting psychiatric comorbidities had a greater impairment in their activities of daily living than patients without psychiatric symptoms (p = 0.003). SIGNIFICANCE OF RESULTS: Undetected psychiatric comorbidities are common in patients receiving palliative care. Screening for psychiatric symptoms should be integrated into standard palliative care to optimize treatment and reduce the psychosocial burden of the disease.

Polypharmacy in the terminal stage of cancer.

PURPOSE: This study aims to determine the numbers of patients with advanced cancer receiving polypharmacy at the end of their lives and analyze differences in drug prescription at a general oncology ward and a dedicated palliative care ward. METHODS: A retrospective single-center cohort study at a university hospital with a large cancer center was conducted. The charts of 100 patients who had died because of advanced cancer were reviewed; data concerning sociodemographic variables and medications were collected at four predefined time points (9, 6, 3, 0 days before death). RESULTS: Nine days before death, polypharmacy was registered in 95 % of patients; they had prescriptions for 11 (9-13) different medications per day (median, IQR). Although this number dropped significantly, on the last day as many as 61 % of the patients were still taking more than 4 drugs (median 6.5, IQR 4-9). No significant difference was noted between the oncology ward and the palliative care ward. Polypharmacy was largely dependent on the patients' ECOG performance status as well as the type of ward, the number of days before death, and age. It was not influenced by gender, the duration of hospital stays, and the devices facilitating drug administration. The medications fulfilled the requirements of palliative care in the majority of patients; 90 % received treatment for pain and anxiety. Patients treated at the palliative ward received more opioids and psychoactive drugs while those at the oncology ward received more anti-cancer drugs and fluids. CONCLUSIONS: Polypharmacy still is a problem in the large majority of patients with terminal cancer. Further studies should be focused on the patients' quality of life, drug interactions, and adverse events.

Gender differences in caregiver burden and its determinants in family members of terminally ill cancer patients.

OBJECTIVE: Female family caregivers consistently report higher levels of stress and burden compared to male caregivers. Explanations for the apparently higher psychological vulnerability of female caregivers are largely missing to date. This study assesses the correlates and determinants of caregiver burden in family caregivers of advanced cancer patients with a specific focus on gender differences. METHODS: Three hundred and eight self-identified main informal caregivers of advanced cancer patients were cross-sectionally assessed using structured questionnaires for caregiver burden and hypothesised determinants of burden, including sociodemographic characteristics, caring arrangements, support needs, hope and coping style. Gender differences and predictors of burden were assessed using t-tests, chi-squared tests and univariate linear regression. Significant univariate predictors were entered in an analysis of covariance separately for men and women. RESULTS: Burden was significantly higher in women. Hope was the most significant protective factor against burden in both genders, together with perceived fulfilment of support needs. Only in women emotion-oriented coping and being in employment while caring were significantly predictive of higher burden in the multivariate analysis. The model explained 36% of the variance in burden in men and 29% in women. CONCLUSION: Psychological support interventions for family caregivers should take gender-specific risk factors into account. Interventions focusing on keeping up hope while caring for a terminally ill family member may be a valuable addition to palliative services to improve support for family carers. Women may benefit from interventions that address adaptive coping and strategies to deal with the dual demands of employment and caring. Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd.

Walking the line. Palliative sedation for existential distress: still a controversial issue?

Adequate symptom relief is a central aspect of medical care of all patients especially in those with an incurable disease. However, as an illness progresses and the end of life approaches, physical or psychoexistential symptoms may remain uncontrollable requiring palliative sedation. Although palliative sedation has become an increasingly implemented practice in the care of terminally ill patients, sedation in the management of refractory psychological symptoms and existential distress is still a controversial issue and much debated. This case report presents a patient who received palliative sedation for the treatment of existential distress and discusses considerations that may arise from such a therapeutic approach.

[Are artificial disorders common in palliative care? A Case report]. / Sind artifizielle Störungen im palliativen Kontext häufig? Ein Fallbericht.

The main task of palliative care specialists is to focus on symptom control such as pain, nausea or fatigue. Thorough anamnesis, physical examination, laboratory examination, and differential diagnosis can ensure appropriate treatment. In an increasing number of cases psychiatric conditions like depression or anxiety increase also occur so palliative care physicians need to be more prepared to handle them. The question of this case report is, how a palliative care specialist can distinguish between a malignant disease or neurological disease progression and a presentation primarily psychiatric in etiology, as is the case in factitious disorders. We are also interested in the incidence rate of such factitious disorders. Our case study demonstrates that it is rare but not impossible that a doctor will encounter factitious symptoms in the palliative setting. This suggest being aware of evidence of psychiatric origins even in discharge letters and referrals that indicate palliative care needs, to ensure that palliative care really is the best treatment option for the patient. We do believe such cases to be rare in a palliative setting, however.

War and peace? The oncologic and the palliative care perspective on personalized cancer treatment in a patient with advanced cancer.

Personalized cancer treatment utilizing targeted therapies in a tailored approach is based on tumor and/or patient-specific molecular profiles. Recent clinical trials continue to look for new potential targets in heavily pretreated patients or rare disease entities. Careful selection of patients who may derive benefit from such therapies constitutes a challenge. This case report presents an experimental personalized cancer treatment in an advanced cancer patient and provides a list of issues for discussion: How can we combine treatment goals and simultaneously meet the individual needs in advanced cancer reconciling both perspectives: oncology and palliative care?

Coming and going: predicting the discharge of cancer patients admitted to a palliative care unit: easier than thought?

PURPOSE: Discharging a patient admitted to an inpatient palliative care unit (PCU) is a major challenge. A predictor of the feasibility of home discharge at the time of admission would be very useful. We tried to identify such predictors in a prospective observational study. METHODS: Sixty patients with advanced cancer admitted to a PCU were enrolled. Sociodemographic data were recorded and a panel of laboratory tests performed. The Karnofsky performance status scale (KPS) and the palliative performance scale (PPS) were determined. A palliative care physician and nurse independently predicted whether the patient would die at the ward. The association of these variables with home discharge or death at the PCU was determined. RESULTS: Sixty patients (26 men and 34 women) with advanced cancer were included in the study. Discharge was achieved in 45 % of patients, while 55 % of patients died at the PCU. The median stay of discharged patients was 15.2 days, and the median stay of deceased patients 13.6 days. Median KPS and PPS on admission was 56.2 % for the entire group and significantly higher for discharged patients (60.7 %) compared to deceased patients (52.4 %). Median BMI on admission was 22.8 in the entire group and was similar in discharged and deceased patients. No correlation was found between a panel of sociodemographic variables and laboratory tests with regard to discharge or death. In a binary logistic regression model, the probability of discharge as estimated by the nurse/physician and the KPS and PPS were highly significant (p = 0.008). CONCLUSION: Estimation by a nurse and a physician were highly significant predictors of the likelihood of discharge and remained significant in a multivariate logistic regression model including KPS and PPS. Other variables, such as a panel of laboratory tests or sociodemographic variables, were not associated with discharge or death.

"Il flauto magico" still works: Mozart's secret of ventilation.

BACKGROUND: Synchronisation/coupling between respiratory patterns and musical structure. METHODS: Healthy professional musicians and members of the audience were studied during a performance of W.A. Mozart's Piano Concerto KV 449. Electrocardiogram (ECG)/Heart Rate Variability (HRV) data recording (Schiller: Medilog®AR12, ECG-channels: 3, sampling rate: 4096 Hz, 16 Bit) was carried out and a simultaneous synchronized high definition video/audio recording was made. The breathing-specific data were subsequently extracted using Electrocardiogram-derived respiration (EDR; Software: Schiller medilog®DARWIN) from the HRV data and overlaid at the same time onto the musical score using FINALE 2011 notation software and the GIMP 2.0 graphics programme. The musical score was graphically modified graphically so that the time code of the breathing signals coincided exactly with the notated musical elements. Thus a direct relationship could be produced between the musicians' breathing activity and the musical texture. In parallel with the medical/technical analysis, a music analysis of the score was conducted with regard to the style and formal shaping of the composition. RESULTS: It was found that there are two archetypes of ideally typical breathing behaviour in professional musicians that either drive the musical creation, performance and experience or are driven by the musical structure itself. These archetypes also give rise to various states of synchronisation and regulation between performers, audience and the musical structure. CONCLUSIONS: There are two archetypes of musically-induced breathing which not only represent the identity of music and human physiology but also offer new approaches for multidisciplinary respiratory medicine.

Patients and staff perceptions of cancer patients' quality of life.

BACKGROUND: Discrepancies exist in estimation of quality of life (QL) by patients and caregivers but underlying factors are incompletely characterised. METHODS: QL of 153 patients was estimated by themselves, by 70 nurses and by 53 physicians in a cross-sectional study. Variables which could influence inter-rater agreement were evaluated. RESULTS: Inter-rater agreement of QL was fair (r = .292) between patients and nurses and between patients and physicians (r = .154). Inter-rater agreement with nurses was significantly lower concerning fatigue and pain for patients with a Karnofsky Index <50 when compared to patients with a KI > 50. Their inter-rater agreement with physicians was significantly lower for fatigue, pain and physical functioning. Agreement on the degree of anxiety was significantly (p = .009) better for female patients. Agreement on the need for social assistance (p = .01) and physical functioning (p = .03) was significantly better for male patients. Agreement with patients on their physical functioning was significantly (p = .03) better for male nurses and male physicians (r = .944) than for female nurses and female physicians (r = .674). CONCLUSIONS: Our study showed that estimation of overall QL of patients by professional caregivers is inaccurate. Inter-rater agreement was influenced by KI of patients, by gender of patients and caregivers and by professional experience of nurses.