Collaborative advance care planning in palliative care: a randomised controlled trial.

OBJECTIVE: An effective tool for establishing concordant end-of-life (EOL) care in patients with cancer is advance care planning (ACP). However, various barriers, including psychological obstacles, hamper the access to ACP. Therefore, a new conceptual model combining a psycho-oncological approach with structured ACP was developed. The effectiveness and efficiency of this new concept of collaborative ACP (col-ACP) is evaluated in the present randomised controlled trial in patients with palliative cancer. METHODS: 277 patients with palliative cancer and their relatives were randomised into three groups (1) collaborative ACP (col-ACP) consisting of a psycho-oncological approach addressing barriers to EOL conversations followed by a standardised ACP procedure, (2) supportive intervention (active control) and (3) standard medical care. RESULTS: Patients in the col-ACP group completed advance directives (p<0.01) and healthcare proxies (p<0.01) significantly more often. Additionally, they felt better planned ahead for their future treatment (p<0.01) and were significantly more confident that their relatives were aware of their treatment wishes (p=0.03). In fact, their goals of care were known and highly fulfilled. However, patients' and caregivers' quality of life, patients' stress, depression and peace did not differ between the groups. CONCLUSIONS: The new, well-received, concept of col-ACP improves readiness and access to ACP and results in more consistent EOL care. Further, even if no direct influence on quality of life could be proven, it supports patients in planning their treatment, making autonomous decisions and regaining self-efficacy in the face of life-limiting cancer. Therefore, a closer interlocking and information exchange between psycho-oncological and ACP services seems to be reasonable. TRIAL REGISTRATION NUMBER: NCT03387436.

Neurooncological Rehabilitation in Diffuse Gliomas.

BACKGROUND: With the further advancement of surgical technology and modern tumor-targeted treatment strategies, longer survival rates can be achieved in diffuse gliomas. Pre- and post-therapeutic physical and cognitive deficits are frequently associated with gliomas. The clinical impact of physical therapy and rehabilitation on neurooncological disorders has not been analyzed consecutively. This study investigates the clinical effect of rehabilitation in patients with diffuse gliomas. METHODS: Patients with surgically and radio-/oncologically treated diffuse gliomas were recruited into this study. They were admitted to an inpatient program for three weeks. The patients underwent physical and occupational therapy, exercise programs, and psychooncological support. The outcome measures included motor strength, mobility, neuropsychological deficits, and tumor localization-dependent symptoms for the statistical determination and comparison of the respective Eastern Cooperative Oncology Group (ECOG) scores on admission and discharge by a two-tailed t-test. RESULTS: A total of 25 patients (f/m: 11/14) with diffuse gliomas were recruited into the program. Four patients (16%) had CNS WHO grade 2, seven patients (28%) had grade 3, and 14 patients (56%) had grade 4 tumors. Major improvement in motor, cognitive, and functions of the daily activities was achieved in the examined population. Major improvement in motor, cognitive, and neurological functions of the daily activities screened in the admission of all patients was achieved. The comparison of the ECOG scores determined on admission and on discharge showed a statistical significance derived from the undertaken t-test with a p-value <0.05. CONCLUSION: We herein show that a clearly defined inpatient rehabilitation protocol significantly enables the improvement of the quality of life of patients with diffuse gliomas. The effectiveness of the exercise program and psychooncological assistance was confirmed by the course of patient-reported functions. Based on the limited number of our patient collective, multicenter studies with broader patient sizes should be performed to confirm our significant results.

Post-COVID-More than chronic fatigue?

After the first COVID-19 survivors were medically treated in Germany from spring 2020 onwards, various courses of the disease emerged that, in addition to the acute infection, led to prolonged symptoms (long COVID), but also to a symptomatic course beyond 12 weeks, which is referred to as "post-COVID syndrome" (PCS). Currently, the incidence of PCS is estimated to be approximately 15% of all symptomatically infected patients, although over- or underestimations may occur due to the soft definition and lack of control groups. The etiology of PCS is currently unknown. The following pathogenetic processes are discussed in particular: an endothelial dysfunction with microcirculatory disturbances and subsequent organ damage, a residual virus or virus particles, and/or an excessive autoimmune process. Due to the large number of organs that may be affected, PCS presents as a very complex clinical picture with up to 200 described symptoms. An evidence-based causal therapy for PCS has not yet been established. The guideline-based inpatient rehabilitation measures adapted to the individual patient resources have proven to be an effective therapy and should therefore be involved in the therapeutic concept at an early stage. Post-COVID syndrome is a multicomplex disease that can have a considerable impact on the quality of life, but also on the professional performance of the affected patients. Thus, it is clearly more than just a chronic fatigue syndrome. In the interest of our patients, treating physicians should take this disease seriously, clarify the differential diagnoses, and provide sensitive therapeutic care.

Influence of a Heterologous (ChAdOx1-nCoV-19/BNT162b2) or Homologous (BNT162b2/BNT162b2) Vaccination Regimen on the Antibody and T Cell Response to a Third Vaccination with BNT162b2.

Emerging numbers of SARS-CoV-2 infections are currently combated with a third vaccination. Considering the different vaccination regimens used for the first two vaccine doses, we addressed whether the previous vaccination influences the immune response to the booster. Participants for this prospective study were recruited from among healthcare workers. N = 20 participants were previously vaccinated with two doses of BNT162b2, and n = 53 received a priming dose of ChAdOx1-nCoV-19 followed by a BNT162b2 dose. Participants were vaccinated with a third dose of BNT162b2 in December 2021. Antibody concentrations were determined after vaccination, and in a subset of n = 19 participants, T cell responses were evaluated. Anti-S concentrations and IFNγ production increased during the first 21 days. The choice of the first and second vaccineshad no influence on the final outcome of the booster vaccination. Before booster vaccination, antibody concentrations were lower for older participants but increased more strongly over time.

Expectations, end-of-life fears and end-of-life communication among palliative patients with cancer and caregivers: a cross-sectional study.

OBJECTIVES: During serious illness, open communication with caregivers can ensure high-quality care. Without end-of-life communication, caregivers may become surrogates and decision-makers without knowing the patient's preferences. However, expectations and fears may influence the initiation of communication. The present study investigates differences between palliative patients with cancer and caregivers regarding expectations of end-of-life communication, end-of-life fears and experiences with end-of-life communication. DESIGN: A cross-sectional study using a semi-structured interview and a paper-based questionnaire SETTING: University Hospital in Germany. PARTICIPANTS: 151 participants: 85 palliative cancer patients (mean age: 62.8 years, 65.9% male) and 66 caregivers (mean age: 56.3 years, 28.8% male). PRIMARY AND SECONDARY OUTCOME MEASURES: Expectations, end-of-life fears and experiences of end-of-life discussions. RESULTS: Patients and caregivers wish for the patient to be self-determined. In general, participants reported more positive than negative expectations of end-of-life discussions. Importantly, concerns about emotionally burdening other person was rated much higher in an informal context than a professional context (F(1,149)=316 958, p<0.001, ηp²=0.680), even though the emotional relief was expected to be higher (F(1,149)=46.115, p<0.001, ηp²=0.236). Caregivers reported more fears about the last period of life and more fears about end-of-life discussions than palliative patients, whereas palliative patients tended to avoid the topics of death and dying to a greater extent. CONCLUSIONS: There seems to exist a 'self-other' asymmetry: palliative patients and their caregivers expect substantial personal relief when openly talking about end-of-life issues, but also expect the other person to be burdened by such communication. Professionals repeatedly need to initiate end-of-life communication.

COVID-19 symptoms are reduced by targeted hydration of the nose, larynx and trachea.

Dehydration of the upper airways increases risks of respiratory diseases from COVID-19 to asthma and COPD. We find in human volunteer studies involving 464 human subjects in Germany, the US, and India that respiratory droplet generation increases by up to 4 orders of magnitude in dehydration-associated states of advanced age (n = 357), elevated BMI-age (n = 148), strenuous exercise (n = 20) and SARS-CoV-2 infection (n = 87), and falls with hydration of the nose, larynx and trachea by calcium-rich hypertonic salts. We also find in a protocol of exercise-induced airway dehydration that hydration of the airways by calcium-rich salts increases oxygenation relative to a non-treatment control (P < 0.05). In a random control study of COVID-19 positive subjects (n = 40), thrice-a-day delivery of the calcium-rich hypertonic salts (active) suppressed respiratory droplet generation by 51% ± 11% and increased oxygen saturation over three days of treatment by 48.08% ± 9.61% (P < 0.001), while no changes were observed in the nasal-saline control group. Self-reported symptoms significantly declined in the active group and did not decline in the control group. Hydration of the upper airways appears promising as a non-drug approach for reducing risks of respiratory diseases such as COVID-19.

[Socioeconomic risks for people with cancer-possible consequences and assistance]. / Sozioökonomische Risiken für Krebserkrankte ­ mögliche Folgen und Hilfestellungen.

Due to therapeutic progress, about 60% of all cancer patients currently survive their disease more than five years. These long-term survivors can be described as cured, but not as healthy. In particular, reduced performance and an associated reduction in working hours, loss of job, or an early retirement can lead to socioeconomic consequences. On average, tumor patients in Germany lose up to 26% of their income, although this does not seem to be necessarily linked to the stage of the disease and thus the corresponding prognosis. Due to objective and subjective financial burdens, a so-called "financial toxicity" can develop, which can have a significant impact on the quality of life and possibly also on the prognosis of the disease.In this article, the socioeconomic risks associated with cancer are presented as well as possible patient assistance and offers. This presentation intends to illustrate how financial toxicity in cancer can be prevented or alleviated. As far as scientific findings are available, they will be described and discussed.Finally, the special situation of young adults with cancer is explained, for whom many of the above-mentioned support measures are not or only partially possible.

[Long-term survival in cancer: definitions, concepts, and design principles of survivorship programs]. / Langzeitüberleben bei Krebs: Definitionen, Konzepte und Gestaltungsprinzipien von Survivorship-Programmen.

Due to improvements in diagnostics and treatment options in hematology and oncology, and thus increasing chances of survival, the number of long-term survivors living with and after a cancer disease in Germany is constantly rising. Although the existing German healthcare system provides multifaceted healthcare offers that are available to long-term survivors, the healthcare situation of this population is not satisfactory. Thus, orientation guides for long-term survivors as well as new and innovative survivorship programs should be developed. This paper provides an overview of the complex of problems, defines relevant concepts, and devises central topics for the development of survivorship programs for long-term cancer survivors.

Rehabilitation care planning on a digital communication platform for patients with a work disability: protocol for the RehaPro-SERVE feasibility study.

BACKGROUND: Long-term disability to work is a risk factor for a permanent reduction in income. Rehabilitation care can support people to return to work. In Germany, rehabilitation care to return to work is mostly provided in specialised clinics. The aim of the Rehapro-SERVE study is to reduce work disability days by facilitating rehabilitation care planning using a digital communication platform. To investigate the feasibility, we will test the implementation of the digital platform and evaluate the study procedures. The Rehapro-SERVE study is funded by the German Federal Ministry of Labour and Social Affairs (BMAS) (grant number: 661R0053K1). METHOD: The feasibility study includes a two-armed unblinded block randomised controlled study (RCT) without follow-up assessments as well as an interview study. Participants for the RCT (n = 16) are primary care patients with a minimum of 4 weeks of absence from work due to musculoskeletal, oncological or psychological conditions and at high risk of early retirement. Eligibility criteria are age 40 to 60 years; minimum of 4 weeks continuous sick leave before recruitment due to musculoskeletal, mental health or oncological conditions; and being at high risk of early retirement. Patients will be recruited from 8 primary care practices in urban and rural areas in Hesse, Germany. Following baseline assessments, patients will be randomised to either digitalised care planning (treatment) or a control group. The digitalised care planning platform will include the patients' primary care physicians, jobcentres and public health physicians to decide on a tailored return-to-work programme. The collaboration will be supported by a case administrator and, if considered beneficial, a social worker for the patient. An interview study will evaluate the acceptability of the study procedures and the intervention. DISCUSSION: The use of a digital communication platform enables stakeholders to exchange information and discuss rehabilitation care planning in a timely fashion. The results of the feasibility study will lead to the adaptation of study procedures for the main study. The results will support the design and conduct of similar studies including digital applications in primary care or across different healthcare settings. TRIAL REGISTRATION: DRKS - German Clinical Trials Register, DRKS00024207 . Registered on 22 March 2021.

Why Do Our Cancer Patients Sleep So Badly? Sleep Disorders in Cancer Patients: A Frequent Symptom with Multiple Causes.

INTRODUCTION: On the one hand, sleep disorders in cancer patients are reported in 30-50% of cancer patients. On the other hand, specific causes for these sleep disorders are little known. This study was done to evaluate factors which may affect sleep of cancer patients. To our knowledge, this is the first study which includes return to work as one factor of sleep disturbance. METHODS: 107 patients with various types of cancer treated in 2 hospitals were interviewed with a battery of questionnaires after having given informed consent. The questionnaires intended to detect abnormalities of sleep and related pain, breathing disorders, restless legs syndrome, depression, rumination, medication, and psychosocial distress. The study was approved by the ethics committee of the University of Marburg. RESULTS: The analysis of the 6 sleep-related questionnaires indicated a sleep disorder of any kind in 68% of all patients. Insomnia symptoms were present in 48 patients (44.9%). Pain, depression, anxiety, and worries about the workplace were significantly related to sleep disorders. CONCLUSION: Sleep disorders are common in cancer patients. The causes are manifold and should be considered by caregivers during diagnosis, therapy, and aftercare of cancer patients. Tumour patients should actively be asked about sleep disorders. If these are present, they should be addressed, and as they have a large impact on quality of life, treatment options should be offered in cooperation with sleep specialists.

[Oncological Rehabilitation and Development of Strategies in Crisis Situations Using the Example of the Covid 19 Pandemic in 2020 by Using a Patient and Staff Survey Results of Pandemic Care]. / Onkologische Rehabilitation und Entwicklung von Strategien in Krisensituationen am Beispiel der Covid-19-Pandemie im Jahr 2020 unter Berücksichtigung einer Patienten- und Mitarbeiterbefragung.

INTRODUCTION: Cancer is a life-threatening disease often with curative therapy approaches, high risk of relapse and distressing symptoms, which require immediate, quality-assured care throughout the entire therapy process including rehabilitation, even in a pandemie. METHODS: We started to develop a pandemic plan to maintain oncological rehabilitation in February 2020. With the involvement of the whole clinic staff we developed protection scenarios with the aim of achieving Covid-19-free clinics. Schedules were developed and implemented based on the epidemiological bulletins of the RKI (Robert Koch Institute, Germany) of 2017 (influenza infection) and 2020 (Covid-19). The effects of these measures were evaluated by means of a patient and employee survey. RESULTS: The challenges of the pandemic have been successfully implemented. Both the patient and employee surveys showed a high level of acceptance of the measures. For example, 98.5% of patients stated that the continuation of rehabilitation was important for their health, even in the pandemic situation. At the same time, 87% felt safe. 88% of all employees (MA) and 93% of MA in the risk group stated that the protective measures were introduced at the right time. At the same time, 76% of all employees and 84% of the employees in the risk group agreed with the additional burden. In spite of the high risk potential in the clinics (immunocompromised patients, patients from different districts with different levels of exposure), an outbreak of SARS-CoV-2 could be avoided in the clinics. CONCLUSION: The timely roll-out of adapted pandemic rules in rehabilitation clinics enables the continuation of high-quality oncological rehabilitation even in pandemic times and thus contributes to a stabilisation of the supply chain for cancer diseases. A high level of acceptance of the measures among patients and hospital staff was evaluated.

Long-Term Follow-Up of Children, Adolescents, and Young Adult Cancer Survivors.

Background and Summary: Thanks to increasing cure rates to currently >80%, children, adolescents, and young adults (CAYA) survive their cancer much more frequently today than decades ago. Due to their long life expectancy, CAYA cancer survivors are at a particular risk of long-term sequelae from the cancer itself or the therapy applied; this requires specific follow-up, and preventative or even therapeutic interventions. Thus, compared to the normal population, morbidity and mortality may be significantly increased. In 2 of 3 survivors, the cancer and the respective treatment can lead to late effects, even after 30 years, which require specific therapy; in about one-third of these cases, these effects are classed as severe. Applying structured follow-up could identify these late effects at an early stage and initiate immediate treatment. In 2018, a working group dealing with long-term survival after cancer detected <40 years of age was founded within the framework of the National Cancer Plan of the German Federal Ministry of Health.

Career and Financial Situation of Patients Diagnosed with Soft Tissue Sarcomas.

BACKGROUND: After receiving a cancer diagnosis patients face many challenges. The association between career situation and financial problems caused by cancer has a substantial impact on quality of life (QoL) among cancer patients. Indeed, the QoL such as physical and mental health of cancer patients is lower when the risk of psychological disorders or distress increases, and chances for cancer cure are reduced. Progress in therapeutic intervention allows many cancer patients a social reintegration into their careers. About one third of cancer patients are younger than 65 years, and with the constant increase in work life periods, a cancer diagnosis also presents a financial burden for those affected. OBJECTIVES: The main objective of this study was to analyse the social QoL in the context of factors related to career and financial situation among patients diagnosed with soft tissue sarcomas (STS). METHODS: A descriptive non-experimental research design was used to conduct a cross-sectional survey over a period of 6 months, between May and November 2016, in collaboration with the Sarcoma Unit at the Mannheim University Medical Centre, Mannheim, Germany, the patient organisation "Das Lebenshaus e.V.," and the German Pension Insurance Hessen (Deutsche Ren-tenversicherung: DRV Hessen)/Pension Fund. We analysed data of 30 patients diagnosed with STS using self-outcome questionnaires in combination with retirement insurance data from the date of first diagnosis up to 3 years afterwards. Out of 280 questionnaires, we received 86 completed forms, of which 56 were excluded. The remaining questionnaires of 30 patients were analysed according to self-determined outcomes and included a calculation of the financial changes caused by the disease. Only patients covered by pension insurance were included in the study. RESULTS: Thirty patients (24 women) whose median age at first diagnosis was 48.7 years (range 31-61 years) were included in the analysis. The average unemployment rate was 8.8 months, and for 67% (20 patients) the employment situation changed after the period of unemployment. Eight patients requested a retirement pension (reduced income insurance), 4 patients reduced their weekly working hours, and 3 patients lost their jobs due to complications of the disease. The data analysis revealed that, among these patients, one benefited from an income increase of about 24%, another one received a regular old-age pension, and 4 patients reported reduced income for other reasons. In total, mean income has been reduced by 26%. Considering only the 8 patients who applied for a pension, partial or total unemployment benefits resulted in an average loss of income of up to 62%. CONCLUSIONS: Reduced ability to work may cause severe financial problems for those affected by the diagnosis of STS. We found an average income reduction of 26%, for those requesting pension payments of 62%. This eventually relates to a higher risk of reduced wealth and may lower the patients' social standing.

Assessing patients´ preferences for breaking Bad News according to the SPIKES-Protocol: the MABBAN scale.

OBJECTIVE: Quality of breaking bad news can seriously affect the course of disease. A frequently applied guideline is the SPIKES-Protocol that have been designed from the physician's perspective. Little is known about patients' preferences in breaking bad news. Our aim was to develop a questionnaire based on the SPIKES-protocol to detect patients´ preferences for breaking bad news communication. METHODS: TheMarburg Breaking Bad News Scale (MABBAN) was developed and administered to 336 cancer patients. We used exploratory factor analysis. To examine potential relationships according to demographic and medical variables, regression analyses were conducted. RESULTS: The novel questionnaire supported the six SPIKES-components of breaking bad news: Setting, Perception, Invitation, Knowledge, Emotions, and Strategy. Perception and Invitation clustered together to one subscale. Depending on clinical and demographic variables different components were rated as important. CONCLUSION: Communication preferences in breaking bad news can be assessed using a SPIKES-based questionnaire. Physicians should improve the setting, share knowledge in all clarity, involve the patients in further planning, and consider demographical variables. PRACTICE IMPLICATIONS: Using SPIKES as a framework can optimize breaking bad news conversations but it seems important to emphasize the individual preferences beyond the six steps and tailor the communication process to the individual.

Return to Work of Cancer Survivors.

Due to improving treatment options, the number of so-called long-term cancer survivors is steadily increasing. Current studies assume that more than 60% of adults survive their cancer. These patients have a variety of problems (chemotherapy-induced neuropathy, fatigue, etc.) that require very special care. In addition to somatic and psychological side effects of the cancer or its treatment, these patients also suffer from the financial and social consequences of the disease. Thus, for a long-term survivor of working age, the question of a 'return to work' represents a significant problem since otherwise the financial existence of the patient, and often the family, may substantially deteriorate. Studies show that cancer patients classify financial worries with regard to the quality of life as more significant than physical or psychological side effects of the cancer or its treatment. Furthermore, there are initial studies showing that the social descent due to the disease may also prove relevant for cancer prognosis. In contrast, it was shown in studies and in a Cochrane analysis that professional assistance and support services are suitable for keeping patients in their professional lives. Therefore, both patients and physicians need to be aware of this problem.

Do patients with chronic pain show autonomic arousal when confronted with feared movements? An experimental investigation of the fear-avoidance model.

The relevance of a phobia-based conceptualization of fear for individuals with chronic pain has been much debated in the literature. This study investigated whether patients with highly fearful chronic low back pain show distinct physiological reaction patterns compared with less fearful patients when anticipating aversive back pain-related movements. We used an idiosyncratic fear induction paradigm and collected 2 different measures of autonomic nervous system activation and muscle tension in the lower back. We identified 2 distinct psychophysiological response patterns. One pattern was characterized by a moderate increase in skin conductance, interbeat interval (IBI) increase, and muscle tension increase in the lower back. This response was interpreted as an attention reaction to a moderately stressful event. The other pattern, found in 58% of the participants, was characterized by a higher skin conductance response, IBI decrease, and muscle tension increase in the lower back. According to Bradley and Lang defense cascade model, this response is typical of a fear reaction. Participants showing the psychophysiological pattern typical of fear also had elevated scores on some self-report measures of components of the fear-avoidance model, relative to participants showing the reaction pattern characteristic of attention. This study is the first to provide psychophysiological evidence for the fear-avoidance model of chronic pain.

Quality of life in cancer rehabilitation: the role of life goal adjustment.

OBJECTIVE: A cancer diagnosis affects patients' quality of life (QOL) as well as their pursuit of life goals. However, numerous studies have shown surprisingly stable QOL measures in cancer patients over time. We propose that life goal adjustment can act as the missing link in explaining this response shift. Thus, the aim of this study was to examine associations between life goal adjustment and patients' QOL at baseline and over the course of 20 months. METHODS: Eighty-six cancer patients were recruited during rehabilitation and reassessed at follow-up 20 months later. Life goals were measured using the Life Goals Questionnaire and analyzed in relation to global QOL as assessed with the World Health Organization Quality of Life Questionnaire - Short Form. RESULTS: The overall attainment of life goals was associated with QOL. Moreover, over a period of 20 months, perceived QOL and goal attainment remained stable, whereas importance of life goals decreased. Lesser importance and improved goal attainment were predictors of increases in QOL. CONCLUSIONS: Results suggest that downgrading unattainable goals and making more progress in accomplishing attainable goals may be possible mechanisms of response shift as an adaption to illness. Thus, integrating life goal adjustment into rehabilitation services for cancer patients seems to be worthwhile to enhance an adaptive self-regulation and QOL.

Reintegrating cancer patients into the workplace.

BACKGROUND: In Germany at present, 64% of women and 59% of men who receive a diagnosis of cancer are still alive five years later. 45% of men and 57% of women with cancer are still of working age. Cancer can markedly harm their ability to work. METHODS: We analyzed data from selected publications to calculate the percentage of cancer patients in Germany who are now returning to work. RESULTS: The efficacy of oncological rehabilitation has not been demonstrated by a randomized controlled trial, nor is it clear whether the existing studies have accounted for potentially confounding variables. A combined assessment of reports from various countries reveals that 63% of cancer patients who are of working age go back to work after being unable to work for an average of five months. The situation varies markedly across countries: In Germany, the percentage of women with breast cancer who return to work is only 59%, compared to 80% in the USA and 82% in the United Kingdom. Younger and better educated patients are more likely to return to work, as are those who have received less invasive treatment with fewer complications. CONCLUSION: Most cancer patients of working age go back to work, but the percentages vary widely from one country to another, perhaps reflecting differences in social systems.