Perspectives of patients with multiple myeloma on accepting their prognosis-A qualitative interview study.

OBJECTIVE: Prognostic awareness is essential for making treatment decisions in malignant diseases. Being confronted with a poor prognosis, however, can affect patients' mental health. Therefore, it is important to study coping in the context of malignant diseases. Acceptance is an adaptive coping strategy associated with less psychological distress. This study sought to explore the facilitators and barriers for prognostic acceptance in a sample in which both hope and uncertainty regarding prognosis are pronounced: multiple myeloma patients. METHODS: In a German university hospital, 20 multiple myeloma patients participated in semistructured interviews. Following thematic content analysis by Kuckartz, the interview transcripts were coded for facilitators and barriers for prognostic acceptance. Additionally, patients completed questionnaires on prognostic awareness and sociodemographic characteristics. RESULTS: Patients described the following facilitators for prognostic acceptance: social support, positive thinking, focusing on the Here and Now, proactive confrontation, having little to no symptoms, and being there for others. The indicated barriers were distressing physical symptoms and restricted functioning, social distress, and additional distress from other areas of life. CONCLUSIONS: Patients reported a variety of factors-related to the social realm, symptom burden, and specific attitudes-that help or hinder them in accepting their prognosis. Oncologists and psycho-oncologists may support prognostic acceptance by encouraging patients to both actively deal with realistic information as well as enjoy pleasant and meaningful moments in the present during which the disease and its prognosis recedes into the background.

Information, communication, and cancer patients' trust in the physician: what challenges do we have to face in an era of precision cancer medicine?

PURPOSE: Despite promising achievements in precision cancer medicine (PCM), participating patients are still faced with manifold uncertainties, especially regarding a potential treatment benefit of molecular diagnostics (MD). Hence, MD poses considerable challenges for patient information and communication. To meet these challenges, healthcare professionals need to gain deeper insight into patients' subjective experiences. Therefore, this qualitative study examined information aspects of MD programs in cancer patients. METHODS: In two German Comprehensive Cancer Centers, 30 cancer patients undergoing MD participated in semi-structured interviews on information transfer and information needs regarding MD. Additionally, patients provided sociodemographic and medical data and indicated their subjective level of information (visual analogue scale, VAS, 0-10). RESULTS: On average patients had high levels of information (mean = 7, median = 8); nevertheless 20% (n = 6) showed an information level below 5 points. Qualitative analysis revealed that patients show limited understanding of the complex background of MD and have uncertainties regarding their personal benefit. Further, patients described unmet information needs. Existential threat in awaiting the results was experienced as burdensome. To withstand the strains of their situation, patients emphasized the importance of trusting their physician. CONCLUSION: The challenges in PCM consist in providing unambiguous information, especially concerning treatment benefit, and providing guidance and support. Therefore, psycho-oncology needs to develop guidelines for adequate patient communication in order to help healthcare providers and cancer patients to handle these challenges in the developing field of PCM.

Cancer patients' expectations when undergoing extensive molecular diagnostics-A qualitative study.

OBJECTIVE: Precision cancer medicine (PCM) aims at identifying tumor-driving molecular characteristics to improve therapy. Despite early successes for some cancers, the approach faces manifold challenges. Patients undergoing extensive molecular diagnostics (MD) may hope for personal benefit, although chances are small. In order to offer suitable support to this group, health-care professionals need to gain insight into patients' experience. Thus, this study sought to explore the expectations of cancer patients undergoing MD of their tumor. METHODS: In two German Comprehensive Cancer Centers, 30 patients with advanced-stage cancer who had exhausted conventional treatment and had consented to extensive, research-oriented MD (whole-genome sequencing n = 24, panel sequencing n = 6) participated in semi-structured interviews. Following thematic content analysis by Kuckartz, the interview transcripts were coded for expectations of MD participation and topics closely related. Moreover, patients completed questionnaires on their sociodemographic characteristics, medical history, and psychosocial distress. RESULTS: Patients reported to be expecting (a) an improvement of their treatment, (b) a contribution to research, and/or (c) additional insight to their own cancer. Further, they described to feel individually appreciated and to have a reason to maintain hope for cure or recovery by participating in MD. CONCLUSIONS: Molecular diagnostics participation led patients to feel treated in a more "personalized" way, allowing them a greater sense of control in their situation of severe illness. Oncologists and psycho-oncologists need to ensure comprehensive information and empathetic support for patients undergoing extensive MD to balance their expectations and actual chances of clinical benefit.

Early palliative care for those who care: A qualitative exploration of cancer caregivers' information needs during hospital stays.

BACKGROUND: The supporting role of caregivers is crucial to cancer patients' care and well-being. Periods of inpatient hospital treatment are common in the cancer trajectory. There is insufficient systematic knowledge of caregivers' experiences and information needs in hospital context. AIM: Aim of this study is to identify information needs and factors contributing to unmet information needs of caregivers in hospital. DESIGN: A qualitative approach was used to identify major themes and specific types of information needs. Interviews with caregivers were conducted and analysed using a qualitative three-step process. SETTING/PARTICIPANTS: The study was conducted in a hospital oncology department. Seventeen caregivers of patients with advanced cancer were interviewed. RESULTS: Caregivers' needs during inpatient treatment vary and are largely unmet. Four major themes emerged from the analysis, revealing information needs of caregivers related to the cancer disease, patient, caregivers themselves and hospital context. The most mentioned issues were appropriate treatment, treatment outcomes and the related consequences for caregivers' life, hospital processes and transition back home. CONCLUSION: Caregivers have a variety of specific information needs which often remain unmet. Based on our findings, we provide recommendations for integrating caregivers into oncology care, which should be implemented in clinical practice, policy decisions and research.

Early integration of palliative/supportive cancer care-healthcare professionals' perspectives on the support needs of cancer patients and their caregivers across the cancer treatment trajectory.

PURPOSE: Delivering palliative/supportive cancer care (PSCC) early in the course of cancer care can enhance patients' and caregivers' quality of life, reduce anxiety and depression, and prolong patients' lives. However, their support needs are analyzed insufficiently from viewpoints other than their own. The goal of this study was to explore the perspectives of healthcare professionals on desirable standards of support for tumor patients and caregivers across the cancer treatment trajectory. It further aimed at identifying starting points for PSCC to address these needs. METHODS: Nine healthcare professionals of varying disciplines in a large German university hospital each participated in one of two focus groups. The qualitative data was analyzed following the grounded theory methodology. RESULTS: The healthcare professionals described it as desirable standards that tumor patients and caregivers receive support coping with tasks, accepting the situation, generating strength, feeling trust, and gaining clarity, thus increasing their sense of control. These support needs were seen as important throughout the whole cancer treatment trajectory of tumor patients and their caregivers. CONCLUSIONS: Team meetings, supervision, tailored education, and structural improvements may aid healthcare professionals to develop and implement ways to further support patients and caregivers. Also, patients' and caregivers' support needs should be screened regularly, e.g., when treatment phases change. This would complement healthcare professionals' subjective theories of relevant needs during a specific treatment phase.

Prognostic Awareness in Advanced Disease: A Review Update and Concept Analysis.

PURPOSE: Although subjective knowledge about the prognosis of an advanced disease is extremely important for coping and treatment planning, the concept of prognostic awareness (PA) remains inconsistently defined. The aims of the scoping review were to synthesize a definition of PA from the most recent literature, describe preconditions, correlates and consequences, and suggest a conceptual model. METHODS: By using scoping review methodology, we searched the Web of Science and PubMed databases, and included publications, reviews, meta-analyses or guidelines on all physical diagnoses, as well as publications offering a conceptual or an operational definition of PA. The data were analyzed by means of content analysis techniques. RESULTS: Of the 24 included publications, 21 referred exclusively to cancer, one to patients with hip fractures and two to palliative care in general. The deduced definition of PA comprised the following facets: adequate estimation of chances for recovery, knowledge of limited time to live, adequate estimation of life expectancy, knowledge of therapy goals, and knowledge of the course of the disease. Further content analysis results were mapped graphically and in a detailed table. CONCLUSION: There appears to be a lack of theoretical embedding of PA that in turn influences the methods used for empirical investigation. Drawing on a clear conceptual definition, longitudinal or experimental studies would be desirable.