Single German centre experience with patient journey and care-relevant needs in amyloidosis: The German AMY-NEEDS research and care program.

BACKGROUND: Amyloidosis is a rare multi-system disorder associated with frequently delayed diagnosis, enormous disease burden and psychosocial distress. METHODS: Systematic assessment of needs was performed by a subtype-spanning questionnaire-based survey within the AMY-NEEDS research and care program. RESULTS: 118 patients with proven amyloidosis (62.7% ATTR, 22.0% AL, 15.3% other forms) were included in August 2020 until February 2021 (mean age 71.2 ±11.3 years; 30% women). The median diagnostic delay between onset of symptoms and diagnosis was 9.0 (range: 2.5; 33.0) months. Local health care providers (HCPs) play a central role on the way to diagnosis. Diagnosis itself typically requires a clinical but not necessarily a university setting. In the treatment phase, the focus moves to the amyloidosis centre as primary contact and coordinator, with general practitioners (GPs) acting predominantly as a contact point in crisis and link to additional services. About half of patients reported impaired quality of life and one third suffering from anxiety and depressed mood, respectively. The majority of patients talk about their concerns with close caregivers and local HCPs. Advance care planning is a relevant, yet insufficiently met need. CONCLUSION: The journey of patients with amyloidotic disease, their contact partners and needs at different stages were characterized in detail within the German health care system. An amyloidosis-specific care concept has to master the multitude of interfaces connecting the numerous treatment providers involved with the amyloidosis centre and GPs as key players. Telemedical approaches could be a promising and well-accepted option allowing optimal coordination and communication.

Needs of amyloidosis patients and their care providers: design & first results of the AMY-NEEDS research and care program.

BACKGROUND: Amyloidosis represents a rare yet heterogeneous multi-system disorder associated with a grave prognosis and an enormous psycho-emotional strain on patients, relatives, and caregivers. We here present the overall study design and first results of AMY-NEEDS, a research program aiming to systematically assess the needs of patients suffering from amyloidosis, their relatives and health care professionals (HCPs), and develop an amyloidosis-specific care approach. METHODS: AMY-NEEDS uses a mixed-methods approach including focus groups (step 1), a questionnaire-based broad evaluation within the local amyloidosis patient collective (step 2), and the development of a needs-adapted care concept (step 3). RESULTS: Seven patients, six relatives and five HCPs participated in the focus groups (step 1). At the time of diagnosis, patients expressed the need of a smooth diagnostic process, possibly enhanced through improved awareness and better education of local HCPs. There was a strong wish to receive well-founded information and comprehensive support including companionship during medical visits, experience the feeling of being understood, find trust in that "everything possible" is being done, and have effortless access to centre staff. In the course of the disease, patients favoured that the specialized centre should manage treatment coordination, monitoring and psychosocial support. The interface between centre and local HCPs was regarded of particular importance, requiring further investigation into its optimal design. CONCLUSIONS: Patients with amyloidosis express particular needs that should appropriately be considered in specifically tailored care concepts.

[Familiarity with and Dissemination of Advance Directives in Germany: Results of a Representative Survey of the General Population]. / Bekanntheit und Verbreitung von Patientenverfügungen in Deutschland ­ Ergebnisse einer repräsentativen Umfrage in der Allgemeinbevölkerung.

With an advance directive, people can make provisions for the case of incapacity to give consent with regard to future medical and nursing treatment decisions. Currently, there are no data available on how well known and widespread advance directives are in the population in Germany. The aim of the study was, in addition to record awareness and dissemination, to find out more about the reasons for (not) writing an advance directive and about information and support used by people. An online survey of a representative sample of the general population (n=1000) was conducted. The data were analysed descriptively and by means of regression analysis. The survey showed that 92% of the sample knew about advance directives, and 37% had already created one. The probability of having already written an advance directive increases with increasing age. The reported reasons for (not) writing were heterogeneous. Almost 2/3 of all respondents had already accessed information on this topic, mainly via the Internet. The majority of those surveyed was not aware of any support available in drafting the advance directive. These findings provide suggestions for tailoring information and support services.

[Knowledge and misconceptions on advance directives-results of a citizen survey]. / Wissensstand und Fehlvorstellungen zu Vorsorgedokumenten ­ Ergebnisse einer Bürgerbefragung.

BACKGROUND: Advance directives (ADs) such as living wills or healthcare powers of attorney are important tools to anticipate medical treatment decisions when decision-making capacity is lost in the future. Although a rising number of citizens in Germany are creating such documents, little is known about their knowledge of the purpose, types, and use of ADs. After more than 10 years since legislation on ADs came into force, this study intends to measure the objective knowledge of citizens and detect deficits in knowledge. METHODS: We conducted a cross-sectional quantitative survey of citizens aged 18+ in the city and county of Wuerzburg. The questionnaire included, among other things, possession, experience, and knowledge of ADs. Sampling was conducted via advertising and local networking. RESULTS: Of the 282 participants who took part in the survey (Mage = 50 years, 2/3 female), 43.4% reported having created a minimum of one document. In the knowledge test, an average of 22/34 points was achieved. While questions about the specific application of ADs based on a case study were often answered correctly, we found deficits about the single document types. The results in the knowledge test and the variables on the subjective level of knowledge correlate positively. DISCUSSION: The relatively high rate of ADs in this sample indicates their rapid dissemination during the past few years in Germany. Overall, the level of knowledge ADs appears to be low, revealing misconceptions about the creator's and involved people's rights and obligations. The measured knowledge level contradicts with the frequently expressed desire of citizens to preserve their autonomy by creating ADs for themselves.

[What do health care professionals know about advance directives?] / Was wissen Fachkräfte im Gesundheitswesen über Vorsorgedokumente?

BACKGROUND: Advance directives are important to preserve the autonomy of patients for future situations in which they are uncapable of expressing their will. They are considered helpful by many healthcare professionals in their professional practice. However, their knowledge on these documents is not well known. Misconceptions can adversely affect decisions at the end of life. This study examines healthcare professionals' knowledge of advance directives and relevant correlates. METHODS: In 2021 healthcare professionals from various professions and institutions in Wuerzburg were surveyed using a standardized questionnaire on previous experiences with, advice on and use of advance directives, as well as an objective knowledge test containing 30 questions. Apart from the descriptive analysis of single questions out of the knowledge test, various parameters were screened for their influence on knowledge level. RESULTS: 363 healthcare professionals from different care settings participated in the study, including physicians, social workers, nurses and emergency services personnel. 77.5% work in patient care, of which 39.8% make decisions based on living wills daily to several times a month. High rates of incorrect answers in the knowledge test show lack in knowledge about decisions concerning patients who are unable to give consent; an average of 18 out of 30 points was achieved. Physicians, male healthcare professionals and respondents with more personal experience regarding advance directives had significantly better results in the knowledge test. CONCLUSION: Healthcare professionals have ethically and practically relevant knowledge deficits and a high need for further training on advance directives. Advance directives play an important role in maintaining patient autonomy and should receive more attention in training and further education equally involving non-medical professional groups.

[Factors of endangering and violation of autonomy in residential nursing homes: results of a scoping review]. / Faktoren der Autonomiegefährdung und -verletzung in stationären Altenpflegeeinrichtungen: Ergebnisse eines Scoping Review.

Background: Respecting autonomy is one of the guiding principles of medical and nursing ethics. Nursing home residents represent a particularly relevant target group whose autonomy can be endangered or violated. Aim: The study aimed to identify factors that endanger or violate the nursing home residents' autonomy and to determine specific life situations and contexts in which these factors are located. Methods: A scoping review was carried out according to the Joanna Briggs Institute-method. Empirical results from journal articles from the publication period 2000-2021 were included. The articles were analyzed using qualitative content analysis. Results: A total of 75 articles were finally included in the review. Identified factors of the endangerment and violation of autonomy are assigned to topic areas located at the level of actors, (care) relationships and structures. Factors that can violate or endanger the residents' autonomy were found in the entire everyday life of the residents. Conclusion: The localization of the identified endangerments/violations on various actor and structural levels indicates the need for comprehensive preservation and promotion of residents' autonomy in nursing homes.

[Development of Practice Guidelines for Social Work in Medical Rehabilitation]. / Entwicklung von Praxisempfehlungen für die Soziale Arbeit in der medizinischen Rehabilitation.

PURPOSE: Social work services are a major part of the treatment spectrum in medical rehabilitation. Given new demands and differences in the practical implementation of social work interventions, there is a need for good clinical practice standards of care. Therefore, practice guidelines (PG) for social work in medical rehabilitation facilities were developed. These are intended to support decision-making processes in interventions and give other professions working in rehabilitative care insight into the range of social work services. The PG were developed in a multi-stage process involving experts from social work practice. METHODS: A national and international literature search was conducted on the current evidence on social work interventions in medical rehabilitation. In a survey of social work services in inpatient and outpatient medical rehabilitation facilities (all indications except addictive disorders, child/adolescent rehabilitation; Nmax=311), social workers were asked to provide information on current practice and their expectations towards the PG. On this basis, a preliminary version of the PG was modified and expanded in an expert workshop and evaluated in a second survey of social work services in rehabilitation facilities (Nmax=184). The results were discussed at a second workshop and on this basis the final PG version was prepared. RESULTS: The PG include information on framework conditions of social work in rehabilitation and on social diagnostics. At the center of the PG are frequent needs and problems of rehabilitation patients. These include work-related problems, social and financial problems, participation of persons with disability, and aftercare/follow-up. Each chapter provides information on needs assessment, the content and scope of suitable interventions, and additional materials and references. CONCLUSION: The PE are intended as a practical aid, based on both practical expertise and existing scientific evidence, to provide social work staff and other professional groups in rehabilitation with information on social work services and their implementation. The focus of the content reflects the expressed expectations of social services for PE.

[Generalist palliative care in hospitals during the first wave of the COVID-19 pandemic]. / Allgemeine Palliativversorgung im Krankenhaus während der ersten Welle der COVID-19-Pandemie.

BACKGROUND: In the research network of German university palliative care centers (PallPan), as part of Network University Medicine (NUM), recommendations for action were developed in regard to the care provided for seriously ill and dying patients during a pandemic. For this purpose, the experiences and needs of hospital staff working closely with patients outside of specialized palliative care units during the first wave of the COVID-19 pandemic were also examined. MATERIALS AND METHODS: Nationwide online survey of 8,882 physicians, nurses and therapists working in acute inpatient care in the period from December 2020 to January 2021 by means of a newly developed and piloted questionnaire on changes, burdens and cooperation with specialized palliative care. Grouping based on the changes in the number of seriously ill and dying people in the first wave of the pandemic. Due to the exploratory character of the survey, the data were analyzed descriptively. RESULTS: 505/8882 completed questionnaires were evaluated (5.7 %). 167/505 (33.1 %) of the respondents reported a lower quality of care for the critically ill and dying. 464/505 (91.8 %) reported exemptions in place for visiting the dying. The most frequently mentioned stress factor was the perceived loneliness of the seriously ill and dying 437/505 (86.5 %), followed by stricter hygiene rules 409/505 (81 %), increased workload 372/505 (73.3 %) and perceived psychological stress on relatives and survivors 395/505 (78.2 %). 141/505 (27.9 %) of respondents used Tablet PCs to support patient-family communication. 310/505 (61.4 %) involved palliative care professionals in patient care, and 356/505 (70.5 %) of respondents found other palliative care services helpful. CONCLUSION: Experiences and suggestions for improving palliative care in pandemic times are integrated into the PallPan recommendations for action. Family visits should be allowed and supplemented by digital offers. Palliative Care should also be integrated into both pandemic and contingency plans.

Wishes and Needs of Nursing Home Residents: A Scoping Review.

Falling birth rates and rising life expectancy are leading to global aging. The proportional increase in older people can be observed in almost all countries and regions worldwide. As a result, more people spend their later years in nursing homes. In homes where person-centered care is implemented, residents report greater satisfaction and quality of life. This approach is based on the wishes and needs of the residents. Therefore, the purpose of this scoping review is to explore the wishes and needs of nursing home residents. A scoping review of the literature was conducted in which 12 databases were systematically searched for relevant articles according to PRISMA-ScR guidelines. Both quantitative and qualitative study designs were considered. A total of 51 articles met the inclusion criteria. Included articles were subjected to thematic analysis and synthesis to categorize findings into themes. The analysis identified 12 themes to which the wishes and needs were assigned: (1) Activities, leisure, and daily routine; (2) Autonomy, independence, choice, and control; (3) Death, dying, and end-of-life; (4) Economics; (5) Environment, structural conditions, meals, and food; (6) Health condition; (7) Medication, care, treatment, and hygiene; (8) Peer relationship, company, and social contact; (9) Privacy; (10) Psychological and emotional aspects, security, and safety; (11) Religion, spirituality; and (12) Sexuality. Nursing home residents are not a homogeneous group. Accordingly, a wide range of needs and wishes are reported in the literature, assigned to various topics. This underscores the need for tailored and person-centered approaches to ensure long-term well-being and quality of life in the nursing home care setting.

Needs and Needs Communication of Nursing Home Residents with Depressive Symptoms: A Qualitative Study.

Nursing home residents are affected by depressive symptoms more often than elders living at home. There is a correlation between unmet needs and depression in nursing home residents, while met needs positively correlate with greater satisfaction and well-being. The study aims to examine the needs of nursing home residents with depressive symptoms and the communication of those needs, as no previous study has explicitly addressed the needs of this group of people and the way they are communicated. We conducted semi-structured interviews with 11 residents of three nursing homes and analyzed them using content-structuring content analysis. The residents reported diverse needs, assigned to 12 categories. In addition, barriers such as health impairments prevented the fulfillment of needs. As to the communication of needs, various interlocutors, facilitators, and barriers were identified. The findings reveal that residents can express their needs and are more likely to do so if the interlocutors are patient and take them seriously. However, lack of confidants, missing or non-functioning communication tools, impatience and perceived lack of understanding on the part of caregivers, and residents' insecurities limit communication of needs.

[The Autonomy of Patients in Inpatient Medical Rehabilitation - Aspects of Endangerment and Preservation]. / Die Autonomie von Rehabilitanden in der stationären medizinischen Rehabilitation ­ Aspekte der Gefährdung und Wahrung.

PURPOSE: The aim of the study is to identify aspects within inpatient medical rehabilitation that may endanger or preserve the autonomy of patients. METHODS: A scoping review was carried out on the basis of the current state of scientific knowledge. The methodological approach was based on the specifications of the Joanna Briggs Institute. The research and generation of findings were logged according to the PRISMA-ScR checklist. RESULTS: The final study inclusion comprises 39 empirical and normative-theoretical contributions. Autonomy-threatening aspects were assigned to the following domains: Rehabilitation system, rehabilitation clinics, staff, patients and third parties. Aspects potentially preserving the autonomy of patients included the following domains: Rehabilitation clinics, staff, concepts and forms of expression as well as instruments. CONCLUSION: A large number of heterogeneous aspects can endanger, but can also preserve or promote the autonomy of patients during their stay in inpatient medical rehabilitation. These are located throughout in the entire rehabilitation process and concern the structural, organizational and personal level. The autonomy of patients should not only be treated as an outcome of rehabilitation, but also as a requirement for structures and actors during the rehabilitation stay.

Decreased mental health, quality of life, and utilization of professional help in cancer patients with unexpressed needs: A longitudinal analysis.

BACKGROUND: Cancer patients' mental health and quality of life can be improved through professional support according to their needs. In previous analyses of the UNSAID study, we showed that a relevant proportion of cancer patients did not express their needs during the admission interview of inpatient rehabilitation. We now examine trajectories of mental health, quality of life, and utilization of professional help in cancer patients with unexpressed needs. METHODS: We enrolled 449 patients with breast, prostate, and colon cancer at beginning (T0) and end (T1) of a 3-week inpatient rehabilitation and 3 (T2) and 9 (T3) months after discharge. We explored depression (PHQ-2), anxiety (GAD-2), emotional functioning (EORTC QLQ-C30), fear of progression (FoP-Q-SF), and global quality of life (EORTC QLQ-C30) using structuring equation models. Furthermore, we evaluated self-reports about expressing needs and utilization of professional help at follow-up. RESULTS: Patients with unexpressed needs (24.3%, n = 107) showed decreased mental health compared to other patients (e.g., depression: d T0 = 0.32, d T1-T3 = 0.39). They showed a significant decline in global quality of life at discharge and follow-up (d = 0.28). Furthermore, they had a higher need for support (Cramer's V T2 = 0.10, T3 = 0.15), talked less about their needs (Cramer's V T2 = 0.18), and made less use of different health care services at follow-up. CONCLUSION: Unexpressed needs in cancer patients may be a risk factor for decreased mental health, quality of life, and non-utilization of professional help in the long term. Further research should clarify causal relationships and focus on this specific group of patients to improve cancer care.

[Living wills of residents in nursing homes - which treatment situations and treatment measures are decreed?] / Patientenverfügungen von Bewohnenden in Pflegeeinrichtungen ­ welche Behandlungssituationen und Behandlungsmaßnahmen werden vorausverfügt?

BACKGROUND: The possibility of using a living will to influence later treatment in the event of incapacity to consent is nowadays an important element in safeguarding patients' autonomy at the end of life. Refusing or consenting treatment measures in advance of treatment is of particular importance for nursing home residents, not only against the background of the COVID-19 pandemic. METHODS: We conducted a survey of all resident-documents in 13 nursing homes of different sizes and service providers in the city and district of Wuerzburg. The documents were analysed according to a deductive-inductive procedure using categorical summaries and descriptive frequency counts. RESULTS: In 265 recorded living wills, 2072 treatment situations and 1673 treatment measures could be identified. Residents largely agree to symptom-relieving and nursing measures and often reject life-prolonging or life-substaining treatment measures, the latter mostly being limited to specific, defined situations. The reference to certain treatment situations regarding resuscitation attempts, both in the form of refusal and consent, was identified in 88.6 % of the living wills. 62 % of the living wills could be assigned to a template. DISCUSSION: The study provides information about the content of living wills of nursing home residents. It thus provides information on medical treatment preferences in the case of incapacity to consent and shows that treatment measures (including resuscitation) are mostly related to specific treatment situations.

[Experiences and perspectives of nursing home residents with depressive symptoms during the COVID-19 pandemic: a qualitative study]. / Erfahrungen und Sichtweisen von Pflegeheimbewohnenden mit depressiver Symptomatik während der COVID-19-Pandemie: eine qualitative Studie.

BACKGROUND: The COVID-19 pandemic requires extensive health protection interventions in order to prevent infections in the long-term care setting. These interventions impact residents' lives, including an increase in depressive symptoms and other negative concomitants. OBJECTIVE: The study aimed to explore the experiences and perspectives of nursing home residents with depressive symptoms during the pandemic. METHODS: In this study nine guideline-based interviews were conducted with residents. These were analyzed using the content-structured content analysis according to Kuckartz. RESULTS: Three main themes were identified: perceptions and emotions related to the pandemic, changes and limitations due to the interventions and wishes in terms of the pandemic. The residents reported both emotional distress and not being afraid of infection and its consequences. In addition, some respondents reported unpleasant restrictions, such as wearing masks. In some cases their usefulness was critically questioned. Furthermore, various wishes of the residents in relation to the pandemic, such as leaving the nursing home, were identified. CONCLUSION: The study showed complex perceptions, changes, and wishes due to the pandemic and its interventions. Therefore, an individual approach to residents with depressive symptoms is necessary to avoid an increase in mental health problems. Against this background, there is a need for participatory implementation of health protection measures for the particularly vulnerable group of nursing home residents.

Unexpressed psychosocial needs in cancer patients at the beginning of inpatient rehabilitation: a qualitative analysis.

OBJECTIVE: Cancer patients often need professional help to alleviate their psychosocial distress. However, not all patients express their needs. In this study, we explored possible barriers to patients' expressing needs, contents of needs difficult to express, and conditions facilitating expressing needs. METHODS: We conducted semi-structured interviews with 29 oncological inpatient rehabilitation patients, 7 members of self-help groups, and 10 health professionals. We analyzed data with structuring content analysis. RESULTS: Fear of stigmatization and difficulties in the physician-patient-relationship were the most critical expression barriers reported. Sexuality deemed to be one of the most challenging themes for patients. Changes in the physician's behavior and sufficient resources were mentioned as the main facilitating conditions. Our results indicate a wide diversity within the barriers and topics, but a general consistency between patients and health professionals. CONCLUSION: This study provides evidence for the existence of a variety of barriers to cancer patients' expressing their needs. PRACTICE IMPLICATIONS: Health professionals should be aware of the different possible expression barriers to facilitate patient communication.

Prevalence and predictors of cancer patients' unexpressed needs in the admission interview of inpatient rehabilitation.

OBJECTIVE: The admission interview in oncological inpatient rehabilitation might be a good opportunity to identify cancer patients' needs present after acute treatment. However, a relevant number of patients may not express their needs. In this study, we examined (a) the proportion of cancer patients with unexpressed needs, (b) topics of unexpressed needs and reasons for not expressing needs, (c) correlations of not expressing needs with several patient characteristics, and (d) predictors of not expressing needs. METHODS: We enrolled 449 patients with breast, prostate, and colon cancer at beginning and end of inpatient rehabilitation. We obtained self-reports about unexpressed needs and health-related variables (quality of life, depression, anxiety, adjustment disorder, and health literacy). We estimated frequencies and conducted correlation and ordinal logistic regression analyses. RESULTS: A quarter of patients stated they had "rather not" or "not at all" expressed all relevant needs. Patients mostly omitted fear of cancer recurrence. Most frequent reasons for not expressing needs were being focused on physical consequences of cancer, concerns emerging only later, and not knowing about the possibility of talking about distress. Not expressing needs was associated with several health-related outcomes, for example, emotional functioning, adjustment disorder, fear of progression, and health literacy. Depression measured at the beginning of rehabilitation showed only small correlations and is therefore not sufficient to identify patients with unexpressed needs. CONCLUSIONS: A relevant proportion of cancer patients reported unexpressed needs in the admission interview. This was associated with decreased mental health. Therefore, it seems necessary to support patients in expressing needs.

Wishes and needs of nursing home residents and their relatives regarding end-of-life decision-making and care planning-A qualitative study.

AIMS AND OBJECTIVES: To explore wishes and needs, such as existing and preferred communication processes, of residents and relatives regarding medical and nursing planning at the end of life. BACKGROUND: Nursing home residents are a relevant target group for advance care planning (ACP) due to their high age and multimorbidity. Their relatives seem to be important partners in terms of communication and their documentation of wishes and needs. DESIGN: A qualitative descriptive design was used. METHODS: Thirty-two guideline-based interviews with nursing home residents (n = 24) and relatives (n = 8) were conducted in nursing homes in Germany (n = 7). All interviews were analysed by content-structured content analysis. The COREQ checklist was used to document reporting of the study. RESULTS: Residents particularly express wishes and needs regarding their health, like the desire to maintain or improve one's current state of health and to be active and mobile and also regarding their social situation, for example the well-being of relatives and beloved ones. A limited group of people was identified with whom residents spoke about issues such as preparedness and self-determination. These were mainly their relatives. Relatives themselves have a need for more communication. Various communication barriers could be identified. CONCLUSION: Residents express diverse and partly explicit wishes and needs. Although many of the respondents had already drafted advanced directives, the demand for offers of communication to plan ahead for the end of life remains clear. The results indicate the unconditional participation of relatives and people close to the residents, if they are available. RELEVANCE TO CLINICAL PRACTICE: Derivations for a target group-related ACP concept in the study region are identified. Besides the involvement of relatives, nurses could also be involved in the communication and decision-making process of residents in nursing homes under certain conditions.

[Health-Promoting Offers at Schools in the City and District of Würzburg]. / Gesundheitsfördernde Angebote an Schulen in Stadt und Landkreis Würzburg.

The aim of the project was to gather information on existing and assess needs for health-promoting offers for pupils at general and vocational schools in the city and district of Wuerzburg (n=156) in order to derive recommendations for action. First, a qualitative document analysis of the homepages of all schools was performed, using a content-structuring content analysis. Based on the generated findings, a written questionnaire survey was conducted. The results show that in particular the topics of nutrition and exercise are extensively dealt with in most school types. Special offers for stress management and relaxation or time and self-management are still expandable across schools. Offers for dealing with (new and social) media do exist - curriculum-dependent - at many schools of different forms. The need for support from the school management is rated very highly. Further support is needed, especially with regard to the financing of external experts.

[Telephone-Based Psychological Counselling of Accident Victims: Initial Evaluation of a Pilot Project of the German Statutory Accident Insurance in the Healthcare and Welfare Services]. / Pilotprojekt "Telefonisch-psychologische Beratung Unfallverletzter" der Berufsgenossenschaft für Gesundheitsdienst und Wohlfahrtspflege ­ Wie wird das Angebot bewertet?

A telephone-based psychological counselling service was implemented and evaluated in four regional offices of the German statutory accident insurance in healthcare and welfare services (BGW). Insurance employees/caseworkers, psychotherapists, and insured persons were asked to rate the counselling service in terms of their experiences and satisfaction. 15.5% of all insured persons initially contacted made use of the counselling service. Those using the service reported a slightly higher level of psychological distress, were less likely to be able to work 3 months after using the service and were more likely to attend a subsequent psychotherapy session. Telephone-based counselling by psychotherapists was rated as helpful by most insured persons. Caseworkers and psychotherapists also rated the concept favorably. All in all, the implementation can be regarded as successful. In a next step, the approach should be evaluated regarding its efficacy in a randomized, controlled trial.

Screening for symptom burden and supportive needs of patients with glioblastoma and brain metastases and their caregivers in relation to their use of specialized palliative care.

PURPOSE: Patients with brain tumors have a high symptom burden and multiple supportive needs. Needs of caregivers are often unattended. This study aims to determine screening-based symptom burden and supportive needs of patients and caregivers with regard to the use of specialized palliative care (SPC). METHODS: Seventy-nine patients with glioblastoma and brain metastases and 46 caregivers were screened with standardized questionnaires following diagnosis and 2 months later. The screening assessed symptom burden, quality of life (QoL), distress, and supportive needs. RESULTS: The most relevant symptoms were drowsiness, tiredness, and low well-being (53-58%). The most prevalent patient supportive needs were the need for information about available resources, the illness, and possible lifestyle changes (50-56%). The most prevalent caregiver needs were information about the illness, lifestyle changes, and about available resources (56-74%). Patients who received SCP and their caregivers had higher symptom burden and supportive needs than those without SPC. They reported moderate improvement in pain, distress, and QoL, while patients without SPC also improved their QoL, but had small to moderate deteriorations in pain, drowsiness, nauseas, well-being, and other problems. Distress of caregivers with SPC improved with moderate to large effect sizes but still was on a high level and remained stable for those without SPC. CONCLUSIONS: Symptom burden and supportive needs were high, but even more caregivers than patients expressed high distress and supportive needs. SPC appears to reach the target group, both patients and caregivers with elevated symptom burden. Targeted interventions are needed to improve tiredness and drowsiness.