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.

[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.

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.

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.

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.

Work-related medical rehabilitation in patients with musculoskeletal disorders: the protocol of a propensity score matched effectiveness study (EVA-WMR, DRKS00009780).

BACKGROUND: Musculoskeletal disorders are one of the most important causes of work disability. Various rehabilitation services and return-to-work programs have been developed in order to reduce sickness absence and increase sustainable return-to-work. As the effects of conventional medical rehabilitation programs on sickness absence duration were shown to be slight, work-related medical rehabilitation programs have been developed and tested. While such studies proved the efficacy of work-related medical rehabilitation compared with conventional medical rehabilitation in well-conducted randomized controlled trials, its effectiveness under real-life conditions has yet to be proved. METHODS/DESIGN: The cohort study will be performed under real-life conditions with two parallel groups. Participants will receive either a conventional or a work-related medical rehabilitation program. Propensity score matching will be used to identify controls that are comparable to treated work-related medical rehabilitation patients. Over a period of three months, about 18,000 insured patients with permission to undergo a musculoskeletal rehabilitation program will be contacted. Of these, 15,000 will receive a conventional and 3,000 a work-related medical rehabilitation. We expect a participation rate of 40 % at baseline. Patients will be aged 18 to 65 years and have chronic musculoskeletal disorders, usually back pain. The control group will receive a conventional medical rehabilitation program without any explicit focus on work, work ability and return to work in diagnostics and therapy. The intervention group will receive a work-related medical rehabilitation program that in addition to common rehabilitation treatments contains 11 to 25 h of work-related treatment modules. Follow-up data will be assessed three and ten months after patients' discharge from the rehabilitation center. Additionally, department characteristics will be assessed and administrative data records used. The primary outcomes are sick leave duration, stable return to work and subjective work ability. Secondary outcomes cover several dimensions of health, functioning and coping strategies. DISCUSSION: This study will determine the relative effectiveness of a complex, newly implemented work-related rehabilitation strategy for patients with musculoskeletal disorders. TRIAL REGISTRATION: German Clinical Trials Register ( DRKS00009780 , February 10, 2016).

Prostate cancer patients' quality of life assessments across the primary treatment trajectory: 'True' change or response shift?

Background Self-report questionnaires are widely used to assess changes in quality of life (QoL) during the course of cancer treatment. However, comparing baseline scores to follow-up scores is only justified if patients' internal measurement standards have not changed over time, that is, no response shift occurred. We aimed to examine response shift in terms of reconceptualization, reprioritization and recalibration among prostate cancer patients. Material and methods We included 402 newly diagnosed patients (mean age 65 years) and assessed QoL at the beginning of cancer treatment and three months later. QoL was measured with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30). We employed structural equation modeling testing measurement invariance between occasions to disentangle 'true' change and change in the measurement model (response shift). Results We found reprioritization effects for both the Physical Functioning and Role Functioning subscales of the EORTC QLQ-C30, indicating that both had gained importance for representing the latent construct of QoL at follow-up. These effects added to the worsening effect evident in the latent construct, thus rendering observed changes even more pronounced. In addition, we found recalibration effects for both the Emotional Functioning and Cognitive Functioning subscales indicating judgments becoming more lenient over time. These effects counteracted 'true' negative changes thus obscuring any substantial changes on the observed level. Conclusion Our results suggest that changes observed in some subscales of the EORTC QLQ-C30 should not be taken at face value as they may be affected by patients' changed measurement standards.

[Competence-based catalogue of learning objectives for conducting medical consultations]. / Kompetenzbasierter Lernzielkatalog ¼Ärztliche Gesprächsführung« .

ISSUE: In 2012 the German medical licensure regulations (Approbationsordnung) made teaching and assessing the conduction of medical consultations a mandatory part of medical education. A catalogue of learning objectives (LO) based on existing references was developed to assist medical schools in meeting this requirement. METHODS: A body of relevant material was compiled using literature research and surveying experts. Then, in a multiphase Delphi process, this was evaluated and condensed by an interdisciplinary working group in dialogue with external (clinical) experts. Competence levels and examples of clinical application were assigned to enhance implementation. The catalogue was revised by the medical faculties, professional associations and the BVMD. RESULTS: This learning catalogue comprised 116 learning objectives for the specific skills necessary to conducting medical consultations as well as exemplary application contexts. The catalogue proved to be practical in terms of developing curricula and networking at medical schools. DISCUSSION: This catalogue of learning objectives can serve as the basis for developing a sample communication curriculum for use by medical faculties.