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.

Prevalence of mental disorders, psychosocial distress, and perceived need for psychosocial support in cancer patients and their relatives stratified by biopsychosocial factors: rationale, study design, and methods of a prospective multi-center observational cohort study (LUPE study).

Background: Despite remarkable progress, cancer remains a life-threatening disease for millions of people worldwide, also resulting in significant psychosocial limitations. High-quality, comprehensive cancer care requires patient and family involvement and the provision of needs-based, targeted psychosocial services. Although progress has been made in understanding the occurrence of mental comorbidity and psychosocial distress in cancer patients, comparatively little is known about the course of psychological comorbidity and psychosocial distress in early survivorship among patients and their families. We therefore aim to estimate the prevalence of mental disorders according to the DSM-5, psychosocial distress, perceived needs for psychosocial support and utilization of psychosocial support offers in newly diagnosed cancer patients and their relatives, taking into account potential contributing biopsychosocial factors for the occurrence of psychological comorbidity. Methods/design: This study follows a prospective multi-center observational cohort design across four measurement time points: within 2 months after cancer diagnosis (t1), and in the follow-up period at 6 months (t2), at 12 months (t3), and at 18 months (t4) after t1. Patients older than 18 years who have a confirmed initial diagnosis of a malignant solid tumor and are scheduled for cancer treatment at one of the participating cancer centers are eligible for study participation. Relatives of eligible patients are also eligible for study participation if they are older than 18 years. Patients are interviewed using the Structured Clinical Interview for DSM-5 Disorders (SCID-5-CV). In addition, patients and relatives receive a set of validated questionnaires at each measurement time point, covering comorbid conditions and functional performance, perceived psychological distress and quality of life, partnership aspects and social relationships, supportive care needs and use of psychosocial support services, health literacy, and health behavior and meaning in life. Discussion: This prospective multi-center observational cohort study has a major focus on increasing quality of care and quality of life in cancer survivors through providing rigorous longitudinal data for the development and implementation of target group-specific psychosocial support services. Trial registration: NCT04620564, date of registration 9/11/2020; DKG OnkoZert: Registrier-No.: ST-U134, date of registration 5/11/2021.

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.