National strategy for palliative care of severely ill and dying people and their relatives in pandemics (PallPan) in Germany - study protocol of a mixed-methods project.

BACKGROUND: In the SARS-CoV-2 pandemic, general and specialist Palliative Care (PC) plays an essential role in health care, contributing to symptom control, psycho-social support, and providing support in complex decision making. Numbers of COVID-19 related deaths have recently increased demanding more palliative care input. Also, the pandemic impacts on palliative care for non-COVID-19 patients. Strategies on the care for seriously ill and dying people in pandemic times are lacking. Therefore, the program 'Palliative care in Pandemics' (PallPan) aims to develop and consent a national pandemic plan for the care of seriously ill and dying adults and their informal carers in pandemics including (a) guidance for generalist and specialist palliative care of patients with and without SARS-CoV-2 infections on the micro, meso and macro level, (b) collection and development of information material for an online platform, and (c) identification of variables and research questions on palliative care in pandemics for the national pandemic cohort network (NAPKON). METHODS: Mixed-methods project including ten work packages conducting (online) surveys and qualitative interviews to explore and describe i) experiences and burden of patients (with/without SARS-CoV-2 infection) and their relatives, ii) experiences, challenges and potential solutions of health care professionals, stakeholders and decision makers during the SARS-CoV-2 pandemic. The work package results inform the development of a consensus-based guidance. In addition, best practice examples and relevant literature will be collected and variables for data collection identified. DISCUSSION: For a future "pandemic preparedness" national and international recommendations and concepts for the care of severely ill and dying people are necessary considering both generalist and specialist palliative care in the home care and inpatient setting.

Factors influencing GPs' perception of specialised palliative homecare (SPHC) importance - results of a cross-sectional study.

BACKGROUND: General Practitioners (GPs) are the main providers of primary palliative care (PPC). At the same time they are the main initiators of specialised palliative homecare (SPHC). In Germany, little is known about factors which influence GPs in their involvement of SPHC. Aim of our study is to identify factors that drive GPs to give value to and involve SPHC. METHODS: A cross-sectional survey was performed. In 2018, questionnaires were mailed to 6000 randomly selected GPs from eight German federal states, focusing on the extent of GPs' palliative care activities and their involvement of SPHC. RESULTS: With a response rate of 19.4% and exclusion of GPs working in SPHC-teams, n = 1026 questionnaires were appropriate for analysis. GPs valued SPHC support as the most "important/very important" for both "technical/invasive treatment measures" (95%) and availability outside practice opening hours (92%). The most relevant factor influencing perceived SPHC-importance was GPs' self-reported extent of engagement in palliative care (ß = - 0.283; CI 95% = - 0.384;-0.182), followed by the perceived quality of utilised SPHC (ß = 0.119; CI 95% = 0.048;0.190), involvement in treatment of palliative patients after SPHC initiation (ß = 0.088; CI 95% = 0.042;0.134), and conviction that palliative care should be a central part of GPs' work (ß = - 0.062; CI 95% = - 0.116;-0.008). Perceived SPHC-importance is also associated with SPHC-referrals (ß =0.138; p < 0.001). The lower the engagement of GPs in palliative care, the more they involve SPHC and vice versa. CONCLUSIONS: GPs with low reported activity in palliative care are more likely to initialise SPHC for palliative care activities they do not deliver themselves for various reasons, which might mean that the involvement of SPHC is substitutive instead of complementary to primary palliative care. This finding and its interpretation should be given more attention in the future policy framework for (specialised) palliative homecare. TRIAL REGISTRATION: German Clinical Trials Register DRKS00014726 , 14.05.2018.

[Anticancer therapy for symptom relief? : A systematic review of clinical trials in oncology]. / Symptomlinderung durch Tumortherapie? : Eine systematische Übersicht über onkologische Therapiestudien.

BACKGROUND: When patients suffer from incurable cancer, drug-based, systemic anticancer therapy is usually used with the aim of longer survival, while minimizing toxicity and ensuring a tolerable quality of life. It is unclear to what extent and with what degree of success systemic tumor therapy can be used to specifically improve pre-existing pain and an already compromised quality of life (QoL). METHODS: Therefore, a systematic review of oncological therapy studies (PubMed) was conducted. Only studies that identified the pain-relieving and QoL-enhancing effects of systemic anticancer therapy as the primary endpoint were selected and evaluated descriptively. RESULTS: Of the 2229 abstracts identified using a piloted search string, only 13 studies met the inclusion criteria. Of these, 10 studies showed an improvement in QoL-parameters through the use of systemic tumor therapies. DISCUSSION: Only a few studies focused primarily on the improvement of parameters related to quality of life-although this is the primary therapeutic goal for many patients suffering from incurable and advanced cancer. The study results encourage regular inclusion of symptom- and QoL-related data in clinical studies and to more explicitly address the potential of systemic anticancer therapy in relieving pain and other symptoms, thereby supporting the goals of palliative care.

[End of life care in general practice: results of an observational survey with general practitioners]. / Hausärztliche Versorgung am Lebensende (HAVEL): Ergebnisse einer retrospektiven Beobachtungsstudie.

BACKGROUND: Little is known about the amount of end of life care provided by general practitioners (GPs) in Germany. Therefore the aim of the HAVEL study is to describe the involvement of GPs in end of life care in more detail. METHODS: Data from all patients who died from natural causes within a period of 12 months (n = 452) were collected from 30 general practices with a self-developed questionnaire and compared to data from patients who died in hospice or palliative care units. RESULTS: Contact rates with GPs increased at the end of life and approximately half of the patients (48 %) were seen within 48 h prior to death. A different spectrum of diseases and symptoms were observed compared to hospice and palliative care units with predominantly chronic diseases (e.g. cardiovascular and mental diseases). DISCUSSION AND CONCLUSIONS: General practitioners are highly involved in palliative health care, even for patients who eventually die in hospitals. Differences in patient characteristics and circumstances compared to specialized palliative care should be reflected in curricula for training in palliative care and the definition of a palliative situation.

[Assessment of patient care needs in general practice]. / Erwartungen von Patienten an den Allgemeinmediziner.

OBJECTIVE: In the German health system general practice has changed drastically in the past few years and patients' opportunities to get medical informations have increased significantly. In light of this, patients' needs in general practice should be re-assessed. PATIENTS AND METHODS: 279 patients from 16 practices mainly in Hessen and Rhineland-Palatinate were interviewed. Using principal factor analysis, 51 questions about doctors were analyzed regarding possible dimensions of patient care needs. RESULTS: The dimensions of patient care needs could be described with four scales: (1) social situation and emotional support, (2) the practitioner's expertise, explanations and information, (3) empathy and esteem for patients and (4) availability of the practitioner and care to chronic patients. In older age groups the importance of psychosocial care was emphasized as well as the practitioner's availability and care for patients with chronic diseases. CONCLUSION: Patient care needs are concentrated in four scales, which include psychosocial and continuous care and availability for patients with chronic diseases. These tasks should be further emphasized in medical education and also represented in the remuneration of practitioners.

[Well-being of patients receiving specialized palliative care at home or in hospital]. / Befinden von Palliativpatienten im Verlauf einer spezialisierten ambulanten oder stationären Versorgung.

BACKGROUND: A major goal of palliative care is sustaining quality of life (QoL) for patients suffering from severe symptoms, which is determined by physical and psychological consequences of an illness as well as other factors, such as the meaning of life and family support. Patients have reported high levels of QoL despite worsening symptoms. The self-estimated QoL of patients receiving outpatient and inpatient palliative care was analyzed using retrospective data from the German Hospice and Palliative Care Evaluation (HOPE). MATERIALS AND METHODS: A descriptive analysis of questionnaires given to 2,030 patients (1,616 inpatients, 414 outpatients) and their professional care takers was carried out assessing symptoms, well-being and care-related information. RESULTS: At the beginning of treatment inpatients had a higher symptom burden than outpatients. Reduced pain, tiredness and weakness and improved well-being allowed inpatients to be discharged. Outpatients suffering from severe dyspnea, constipation and anxiety were more likely to be admitted to hospital. Well-being was associated with symptom burden, weakness and tiredness in both self-evaluation and care-taker assessment particularly for outpatients. CONCLUSIONS: While tiredness and weakness influenced QoL especially for outpatients, patient-specific factors may surpass them in patient perception. To improve the QoL of palliative care patients, individual factors must be assessed in addition to symptom control.

Causes and treatment of residual urine volume after orthotopic bladder replacement in women.

OBJECTIVES: Intact innervation of the female urethra is conditional for normal urination. In the past, urethrectomy was performed as part of cystectomy. After intense anatomical studies of the female pelvis, urethral-function-sparing cystectomy was developed. METHODS: Our clinical group consists of 41 female patients who were operated from 1993 to 1998 for bladder cancer, utilizing cystectomy with orthotopic bladder replacement. RESULTS: In 28 patients, complete daytime continence was restored and in 13 patients, daytime continence was socially satisfactory (1-2 pads were used due to mild stress incontinence). The drawback of orthotopic replacements in females is the frequent development of serious residual volume, which was seen in one third of the 41 patients. The functional results of orthotopic neobladders and therapy of residual urine volume were documented using urodynamic studies. CONCLUSIONS: Postvoiding residual volume may be caused by isolated dysfunction of the urethra and can be treated with clean intermittent self-catheterization or with alpha-blockers, which improve evacuation of the neobladder.

[Reconstruction of the lower urinary tract in women after cystectomy]. / Rekonstrukce dolních mocových cest u zeny po cystektomii.

BACKGROUND: The first extirpation of the urinary bladder on account of malignant papilomatosis was carried out by Karel Pawlik in 1889 as the first one in the world. At present cystectomy is indicated usually because of an infiltrating carcinoma of the urinary bladder. The objective of the present paper is, based on anatomical investigations, elaboration of a surgical technique of creating a orthotopic neovesica following cystectomy sparing a functional female urethra. METHODS AND RESULTS: In 1993-1998 32 women were operated within the age bracket of 32-72 years with a confirmed infiltration carcinoma of the urinary bladder. The authors describe in detail their own surgical technique. Day continence was achieved in 20 patients. Twelve patients suffer from stress incontinence. Eight patients have a post-micturition residue of 250-300 ml calling for a combination of medicamentous treatment and autocatheterization. The capacity of the neovesicle is the cause of nycturia: 21 patients must micturate once or twice during the night. Urodynamic studies did not reveal significant differences between patients with chronic post-miction residues and without residues. Also the mean functional length of the urethra was in both groups similar (27 mm in patients with a residue and 26.2 mm in patients without a residue). CONCLUSIONS: The elaborated surgical technique of cystectomy and creation of a neovesica makes a good quality of the patients' life possible.

Female urethra-sparing cystectomy and orthotopic bladder replacement.

OBJECTIVE: Orthotopic bladder replacement after cystoprostatectomy has long become the method of choice in the treatment of infiltrating bladder cancer in males. Very good quality of life in patients thus treated stimulated the work on a similar approach applicable to females. METHODS: Twelve females were treated by urethra-sparing cystectomy. The surgical technique preserves not just the urethra itself but also the pelvic floor and relevant innervation. RESULTS: Diurnal continence was achieved in 11 patients, 1 of whom had a so-called hypercontinence with a residual volume of 300 ml. The remaining patient suffered from stress incontinence. CONCLUSION: The described urethra-sparing radical cystectomy in female patients with a urothelial tumor, with normal pelvic floor and with a low risk of secondary affection of the urethra, permits reconstructing a continent orthotopic neobladder from a detubularized intestinal segment.

[Interstitial cystitis]. / Intersticiální cystitida.

Interstitial cystitis (IC) is a complex of painful mictional symptomatology of unknown etiology. Is occurs more frequently in women. By cystoscopy the ulcerative and non-ulcerative form is differentiated. A typical diagnosis symptom are glomerulations during cystoscopy under general anaesthesia. There are diagnostic criteria which rule out IC. Histopathologically the following are differentiated: classical IC with proliferation of mastocytes in the detrusor, detrusor myopathy and eosinophil cystitis. Treatment includes intervesical instillation of various substances, transurethral procedures or supratrifonal cystectomy, incl. enterocystoplasty.

[A continent urinary diversion with a detubularized rectum and sigmoid (sigmo-rectal pouch)]. / Kontinentní mocová derivace s pouzitím detubulizovaného rektosigmatu (sigma-rectum pouch).

BACKGROUND: The continent reservoir is an ideal urinary diversion in patients after cystectomy. The artificial closing mechanism construction in these reservoirs is rather complicated and the results are uncertain. The objective of the present work is to assess own experience with a relatively simple rectosigmoid reservoir created by a method described by M. Fisch. METHODS AND RESULTS: Since 1992 till 1995 the sigma-rectum detubularized reservoir was performed in 30 patients. The intricating bladder cancer was an indication for the operation in 27 patients and the other bladder diseases in 3 patients. The patients age ranged from 18 to 75 years. Diurnal continence was achieved in all 30 patients. 12 of them have to awake during the night to evacuate the reservoir 1 to 3 times. CONCLUSIONS: Sigma-rectum pouch is a good form of cintinent diversion in such patient, which are not suitable for orthoscopic neobladder because of oncologic limitation or bad general conditions. The patients tolerate the procedure very well, heal and adapt quickly to new evacuating mechanisms.

[Orthotopic reconstruction of the urinary bladder with preservation of urethral function in women after cystectomy]. / Ortotopická náhrada mocového mechýre u zeny po cystektomii se zachováním funkcní uretry.

Since 1993 till 1995 cystectomy preserving the urethra in twelve female patients with infiltrating bladder cancer was performed. The patients age ranged form 32 to 72 years. The female urethra sparing radical cystectomy includes removal of the bladder together with the uterus and ovaries and resection of the anterior vaginal wall. The condition for preserving of the function of the urethra is its integrity including corresponding innervation and intact pelvic floor. The neobladder is made of a detubularized ileal segment and anastomosed with the urethra. Diurnal continence was achieved in 11 patients, one of them has so called hypercontinence with residual volume of 300 ml. One patient suffers from stress incontinence. The functional characteristics of the orthotopic neobladder in the operated females are very favourable. The risk of further affliction of the retained urethra with an urothelial tumor is possible to influence by a choice of selected patients for the overmentioned procedure.

[Morphometric study of the myocardial T-+L-system under the influence of the beta-adrenergic agent fenoterol]. / Morphometrische Untersuchung des myokardialen T- + L-Systems unter Einfluss des Betaadrenergikums Fenoterol.

In order to evaluate possible cardiotoxic properties of the beta adrenergic agent fenoterol, the effect of fenoterol alone and in combination with verapamil and prednisolone respectively was examined regarding the myocardial T- and L-system of 54 female rabbits. Five study groups and one control group measured the width morphometrically of the T- and L-system in electronmicroscopical pictures of the myocardium after treating the animals accordingly. A relevant dilatation of the T- and L-system was not found in this study, neither by morphological evaluation of the electron-microscopical pictures, nor in the morphometric-statistical analysis of the measurements in both experimental and control groups. Therefore, no pathological effects concerning the width of the T- and L-system could be found by applying fenoterol alone or in combination with the calcium antagonist verapamil and prednisolone respectively for tocolytic purposes.