Methods for measuring financial toxicity after cancer diagnosis and treatment: a systematic review and its implications.

Patients experiencing financial distress as a side-effect of cancer are not only reported in the United States, but also in third-party payer healthcare systems in Europe. Since validated survey instruments are a prerequisite for robust and comparable results, we aimed to compile and classify available instruments to enable both a better understanding of the underlying construct of financial toxicity and to facilitate further studies that are adjustable to various healthcare systems. We did a systematic literature search on studies that provide data on perceived cancer-related financial distress experienced by adult patients using PubMed, CINAHL and Web of Science databases up to 2018. We analyzed all detected instruments, items domains and questions with regard to their wording, scales and the domains of financial distress covered. Among 3298 records screened, 41 publications based on 40 studies matched our inclusion criteria. Based on the analysis of 352 different questions we identified 6 relevant subdomains that represent perceptions of and reactions to experienced financial distress: (i) active financial spending, (ii) use of passive financial resources, (iii) psychosocial responses, (iv) support seeking, (v) coping with care or (vi) coping with ones' lifestyle. We found an inconsistent coverage and use of these domains that makes it difficult to compare and quantify the prevalence of financial distress. Moreover, some existing instruments do not reflect relevant domains for patients in third-party payer systems. There is neither a consistent understanding of the construct of financial burden nor do available instruments cover all relevant aspects of a patients' distress perception. We encourage using the identified six domains to further develop survey instruments and adjust them to different health systems.

Cross-sectoral cancer care: views from patients and health care professionals regarding a personal electronic health record.

Cross-sectoral cancer care is complex and involves collaboration from health care professionals (HCPs) across multiple sectors. However, when health information exchange (HIE) is not adequate, it results in impeded coordination and continuity of care. A web-based personal electronic health record (PEPA) under patients' control, providing access to personal health data across sectors, is being developed. Aim of this study was to explore perceived benefits and concerns. Using a qualitative approach, 10 focus groups were performed collecting views of three prospective user groups: patients with colorectal cancer (n = 12), physicians (n = 17) and other HCPs (n = 16). Representatives from different health sectors across the Rhine-Neckar region (Germany) participated. Data were audio- and videotaped, transcribed verbatim and thematically analysed. Our study shows that patients and HCPs expected a PEPA to enhance cross-sectoral availability of information, cross-sectoral cooperation and facilitate data management. Quality of cancer care was expected to be improved. Concerns were expressed in terms of data protection and data security. Concepts like a PEPA offer the chance to support HIE and avoid gaps of information in cross-sectoral cancer care. This may lead to improvements in coordination and continuity of care. Issues concerning data security and protection have to be addressed.

Framework for timing of the discussion about forgoing cancer-specific treatment based on a qualitative study with oncologists.

BACKGROUND: Many patients with advanced cancer receive aggressive chemotherapy close to death and are referred too late to palliative or hospice care. AIM: The aim of this study was to investigate oncologists' and oncology nurses' perceptions of the optimal timing for discussions about forgoing cancer-specific therapy at the End-of-Life (EOL) and the reasons that might hinder them. DESIGN: Qualitative in-depth interviews with oncologists and oncology nurses were carried out. The empirical data were evaluated from a normative perspective. SETTING/PARTICIPANTS: Twenty-nine physicians and nurses working at the Department of Hematology and Oncology of a German university hospital were interviewed. RESULTS: Health-care professionals differed considerably in their understanding of when to initiate discussions about forgoing cancer-specific therapy at the EOL. However, their views could be consolidated into three approaches: (1) preparing patients gradually throughout the course of disease (anticipatory approach) which is best suited to empower patient self-determination in decision-making, (2) waiting until the patient him/herself starts the discussion about forgoing cancer-specific treatment, and (3) waiting until all tumor-specific therapeutic options are exhausted. CONCLUSION: The empirically informed ethical analysis clearly favors an approach that prepares patients for forgoing cancer-specific therapy throughout the course of disease. Since the last two approaches often preclude advance care planning, these approaches may be less ethically acceptable. The proposed framework could serve as a starting point for the development of concrete recommendations on the optimal timing for EOL discussions.

Psychometric evaluation of the German Version of the Supportive Care Needs Survey for Partners and Caregivers (SCNS-P&C-G) of cancer patients.

This study aimed for psychometric validation of the German version of the Supportive Care Needs Survey for Partners and Caregivers (SCNS-P&C-G). In- and outpatients with lung, urological and gastrointestinal cancer at Heidelberg University Hospital in Germany and in each case one relevant caregiver were asked to complete a set of questionnaires assessing their unmet needs together with distress, depression, anxiety and caregiver strain. In addition, medical data of the patients were collected. Fully completed questionnaires were received from 188 pairs of patients and their caregivers. Using exploratory factor analysis, four domains of unmet needs were identified with an appropriate variance explanation (58.7%) and acceptable (>0.70) internal consistencies (α = 0.95 to 0.76) for each domain. Convergent validity was found with respect to significant positive correlations (>0.40) of the SCNS-P&C-G domains with caregivers' anxiety, depression and strain. Although poorer health status of the patient indicated more unmet caregiver needs, this finding was not consistent for all need domains. Overall, associations were only moderate to weak pointing out the necessity of a separate screening for caregivers' needs. The findings of this study support that the SCNS-P&C-G is an appropriate research instrument to assess caregivers' needs on different domains throughout the disease trajectory.

The role of relatives in decisions concerning life-prolonging treatment in patients with end-stage malignant disorders: informants, advocates or surrogate decision-makers?

BACKGROUND: This study examines the extent to which relatives of severely ill cancer patients are involved in the decision to limit treatment (DLT), their role in communicating patient wishes and the incidence of and reasons for disagreement with relatives. PATIENTS AND METHODS: This cohort study followed 70 patients with terminal cancer, for whom a limitation of life-prolonging treatment was being considered. 'Embedded researchers' recorded patients' wishes and the relatives' roles and disagreements with DLT. RESULTS: Although 63 out of 70 patients had relatives present during their care, only 32% of relatives were involved in DLT. Physicians were more likely to know the end-of-life (EOL) preferences for those patients who had visiting relatives than those without them (78% versus 29%, P = 0.014). Most relatives supported patients in voicing their preferences (68%), but one-third acted against the known or presumed wishes of patients (32%). Disagreements with patients' relatives occurred in 21% of cases, and predominantly when relatives held views that contradicted known patient preferences (71% versus 7%, P = 0.001). CONCLUSION: If relatives are to play an important part in EOL decision making, we must devise strategies to recognise their potential as patients' advocates as well as their own needs.

[Ethical frameworks as a corrective in daily clinical practice? : Reflection on the significance of organizational ethics in tackling the challenges of economization in the medical system]. / Klinikkodizes als Korrektiv im ärztlichen Alltag? : Eine Reflexion zur Bedeutung organisationsethischer Aspekte im Umgang mit der Ökonomisierung des Medizinsystems.

BACKGROUND: Economic considerations play an ever-increasing role in the decisions and actions of physicians, at times compromising the doctor-patient relationship and the quality of treatment. A reflection on an appropriate form of economization in the medical system therefore seems to be necessary. OBJECTIVES: This article examines the conditions under which moral standards can be effective in daily clinical practice. MATERIALS AND METHODS: Strategies against the scarcity of resources are evaluated using ethical criteria. Organizational ethics approaches are discussed as a possible solution. RESULTS: Economic considerations are desirable if they increase efficiency in the healthcare system. However, rationing for purely cost reasons or delivering services to increase profit are ethically questionable motives. In addition to individual care decisions, cost decisions need to be transparently weighed at the institutional and health policy levels. Through this higher-level approach, carers will be better able to focus on the core of medical treatment which is the patient's well-being. CONCLUSIONS: Codes of conduct such as the DGIM (German Society of Internal Medicine) Clinic Codex can be useful ethical guidelines for patient care if they are institutionally implemented and actually used in the institution.

[Changing the treatment goal at the end of life: effects of a guideline at a hospital]. / Änderung des Therapieziels am Lebensende: Effekte einer Klinik-Leitlinie.

BACKGROUND AND OBJECTIVE: Deciding about treatment goals at the end of life is a frequent and difficult challenge to medical staff. As more health care institutions issue ethico-legal guidelines to their staff the effects of such a guideline should be investigated in a pilot project. PARTICIPANTS AND METHODS: Prospective evaluation study using the pre-post method. Physicians and nurses working in ten intensive care units of a university medical center in Germany answered a specially designed questionnaire before and one year after issuance of the guideline. RESULTS: 197 analyzable answers were obtained from the first (pre-guideline) and 251 from the second (post-guideline) survey (54 % and 58 % response rate, respectively). Initially the clinicians expressed their need for guidelines, advice on ethical problems, and continuing education. One year after introduction of the guideline one third of the clinicians was familiar with the guideline's content and another third was aware of its existence. 90% of those who knew the document welcomed it. Explanation of the legal aspects was seen as its most useful element. The pre- and post-guideline comparison demonstrated that uncertainty in decision making and fear of legal consequences were reduced, while knowledge of legal aspects and the value given to advance directives increased. The residents had derived the greatest benefit. CONCLUSION: By promoting the knowledge of legal aspects and ethical considerations, guidelines given to medical staff can lead to more certainty when making in end of life decision.

[Imaging of soft tissue sarcomas: standard approaches and new strategies]. / Moderne bildgebende Diagnostik bei Weichteilsarkomen.

Soft tissue sarcomas are rare malignant neoplasms accounting for only 1% of malignant tumors in adults. Complete surgical resection of the tumor is key for therapeutic success. Comprehensive diagnostic imaging significantly contributes to adequate preoperative planning. With effective targeted molecular pharmacotherapies entering the clinical scenario, functional imaging strategies will have a significant effect on individual risk assessment and will contribute to optimized, noninvasive treatment response monitoring.

The ethics of policy writing: how should hospitals deal with moral disagreement about controversial medical practices?

Every healthcare organisation (HCO) enacts a multitude of policies, but there has been no discussion as to what procedural and substantive requirements a policy writing process should meet in order to achieve good outcomes and to possess sufficient authority for those who are asked to follow it.Using, as an example, the controversy about patient's refusal of blood transfusions, I argue that a hospital wide policy is preferable to individual decision making, because it ensures autonomy, quality, fairness, and efficiency. Policy writing for morally controversial medical practices needs additional justification compared to policies on standard medical practices and secures legitimate authority for HCO members by meeting five requirements: all parties directed by the policy are represented; the deliberative process encompasses all of the HCO's obligations; the rationales for the policy are made available; there is a mechanism for criticising, and for evaluating the policy.