The impact of divergent forms of social support on health-related quality of life in patients with multiple myeloma and its precursor states.

PURPOSE: Multiple myeloma is a largely incurable disease. Patients suffer from the cancer, therapeutic side effects, and often psychological symptoms. Not only multiple myeloma patients but also patients with precursor diseases show high psychological distress. Today, treatment option evaluations are increasingly performed in combination with health-related quality of life (HRQoL) assessments. One factor that is positively associated with HRQoL is social support. METHODS: Our recent study used questionnaires (EORTC QLQ-C30, EORTC QLQ-MY20, Illness-specific Social Support Scale) to investigate the influence of positive and negative aspects of social support on HRQoL in patients with multiple myeloma and its precursors. RESULTS: Multiple linear regression analyses with sex, age, treatment line, hemoglobin level, and number of comorbidities as control variables show that positive social support had a significant beneficial association with emotional function (ß = 0.323) and social function (ß = 0.251). Detrimental interactions had a significant negative association with social function (ß = - 0.209) and a significant positive association with side effects of treatment (ß = 0.266). CONCLUSION: Therefore, screening for social support and, if needed, psycho-oncological care can be an important resource and should be implemented in routine care. CLINICAL TRIAL REGISTRATION: This study was registered with clinicaltrials.gov (NCT04328038).

My virtual home: needs of patients in palliative cancer care and content effects of individualized virtual reality - a mixed methods study protocol.

BACKGROUND: The desire to be at home is one of the most important needs of patients with advanced, incurable cancers. However, palliative cancer patients may require inpatient hospital care for medical reasons. Virtual reality (VR) could provide an approximation to the individuals' home environment. METHODS: The project consists of 3 parts. All parts are supported by the patient advisory board. In the 1st part of the project, we interview patients, relatives, and the patient advisory board about their wishes and concerns regarding the project. In the 2nd part of the project, patients are offered to view 360° VR videos of their choice (their home, relatives, others if applicable). Effects and side-effects of the intervention are assessed with validated instruments (MIDOS, MDBF, SSQ, SPES). Diagnosis, treatment adherence, medication, and vegetative functionality is determined from the medical records of the patients. In the 3rd part of the project, the results of the study will be discussed with patients, relatives, health care professionals and the patient advisory board regarding implementation. DISCUSSION: This study is the first to investigate whether individualized VR videos have additional benefits over generic VR nature videos on symptom relief, well-being, treatment satisfaction, and adherence in patients with palliative cancer care. A strength of the study is that we can incorporate the results of each part of the project into the subsequent project parts. However, the generalizability might be limited as this is a single-centred study. TRIAL REGISTRATION: Registered at German Clinical Trials Register (Deutsches Register Klinischer Studien; DRKS); registration number: DRKS00032172; registration date: 11/07/2023 https://drks.de/search/de/trial/DRKS00032172 .

Understanding Alveolar echinococcosis patients' psychosocial burden and coping strategies-A qualitative interview study.

BACKGROUND: Alveolar echinococcosis (AE) is a serious parasitic zoonotic disease that resembles malignancy with clinically silent infiltrative growth predominantly involving the liver. AE patients show high levels of comorbid psychological burden and fear of disease progression. This study aimed to examine AE patients' perspective on their disease-related psychosocial burden using qualitative methods. METHODS: We conducted N = 12 semi-structured interviews with AE patients focusing on their disease-related psychosocial burden, coping strategies, information seeking behavior, and subjective illness concepts. To this end, AE patients from a previous quantitative cross-sectional study were invited to participate. After verbatim transcription, interviews were analyzed thematically. RESULTS: After analysis, data was grouped into five main themes: A) Perceived disease-related burden, B) Coping with disease-related burden, C) Disease-related impact on their social environment, D) Facing the future with the disease, and E) Disease-related information seeking behavior and subjective illness concepts. All participants perceived AE as a severe disease with inextricably linked biological, psychological, and social effects. Key positive influences reported included the provision of information and access to informal and formal support, including the ability to lead active personal and professional lives for as long as possible. Self-directed, web-based information seeking often led to increased feelings of hopelessness and anxiety. CONCLUSION: Our findings underscore the need to consider psychosocial morbidity in AE patient management. To reduce psychological burden, address disease-related apprehensions, and to prevent stigmatization, health professionals need to provide AE patients with comprehensive disease-related information to improve patient and social awareness.

[Development and Evaluation of a Manualized Body-Psychotherapeutic Group Intervention with Functional Relaxation for Patients with Cancer "Calm with Body and Soul"]. / Entwicklung und Evaluation einer manualisierten körperpsychotherapeutischen Gruppenintervention mit Funktioneller Entspannung bei krebskranken Patienten "Gelassen mit Leib und Seele".

OBJECTIVE: A feasibility study to determine whether oncology patients in the acute phase of their disease can participate in and benefit from a functional relaxation (FR) program. METHODS: A group intervention (N=14) over 10 sessions following the FR functional relaxation stress manual; measurement of psychological distress by a pre-post questionnaire survey. RESULTS: The intervention appears well suited to help psychologically distressed patients process their symptoms and cope with stressors. There was some indication that general well-being increased and hyperarousal decreased.Overall well-being increased; hyperarousal decreased. DISCUSSION: The intervention was well accepted, but regular participation was not always possible due to the disease. The body therapy approach and group setting seemed particularly helpful. Due to the heavy physical strain on the patients, the structure of the groups as well as individual exercises were adapted individually. CONCLUSION: The body-based interventions made unconscious elements accessible and thus to work with therapeutically to a limited extent. Further research is needed to show the effectiveness of this functional relaxation group intervention.

Couples coping with advanced prostate cancer: An explorative study on treatment decision making, mental deterioration, partnership, and psychological burden.

OBJECTIVES: The aim of this study was to evaluate the role of spouses and the relevance of quality of life (QoL) and life expectancy (LE) in the treatment decision-making process of patients with advanced prostate cancer (CaP). We also addressed the role of possible mental deterioration, partnership quality, QoL, distress, anxiety, and depression in patients and their spouses. METHODS AND MATERIAL: This was a cross-sectional non-interventional explorative study. We administered questionnaires to 96 patients with advanced CaPand their spouses. Both patients and their spouses were asked about the influence of the spouses on treatment decision making, if they prefer quality of life or life expectancy as main goal of treatment and the perceived deterioration of the patients' mental abilities. Additional questionnaires were used to assess medical history, partnership, global quality of life, distress, depression, and anxiety. We performed statistical tests to compare patients with spouses and correlations to detect associations between variables. RESULTS: The spouses (65 ± 9 years) were significantly younger than the patients (69 ± 9 years). Ninety-five percent of the patients and 91% of the spouses reported that the spouses were involved in making treatment decisions. There was a high similarity within couples with regard to their preference for QoL or LE during treatment. Between couples, this preference differed markedly. Emotional control and motivation were the areas most commonly reported to have deteriorated among patients' mental abilities. The quality of the partnership was rated as being higher than average by both partners. Among the spouses, the quality of partnership correlated significantly with the preference for LE with regard to treatment decision making. Patients and spouses reported high psychological burdens in all areas, with higher levels of distress and anxiety in spouses (P< 0.01). Reduced quality of life and greater distress, depression, and anxiety were significantly correlated with the amount of deterioration of the patients' mental abilities. CONCLUSIONS: Spouses of patients with advanced CaP seem to respond to different aspects of the disease by adjusting both their involvement in treatment decision making and their preferred goal of treatment. Due to mental deterioration in the patients and pronounced anxiety in their spouses, we suggest that it is important for the attending physician to provide detailed information and support to both partners. Overall, the high-stress situation seems to affect both partners to similar degrees.

Secondary traumatization in first responders: a systematic review.

Background: Finding precise definitions of secondary traumatic stress, vicarious traumatization, and compassion fatigue is not easy. While some researchers define these terms differentially, others use them interchangeably. In the present review, we refer to all three phenomena as secondary traumatization. Objectives: This systematic review aims to provide an overview of prevalence rates of secondary traumatization in first responders and to shed light on corresponding resilience and risk factors. Methods: After identifying 219 studies within the searched databases and 2192 references via hand searching, 31 studies were included in this review. We systematically searched the electronic databases PubMed, PsychINFO, and PSYNDEX (German database). The following inclusion criteria were applied: (1) participants had to be first responders working on-site: police officers, firefighters, search and rescue personnel, or emergency and paramedic team members; (2) secondary traumatization (secondary traumatic stress/vicarious traumatization/compassion fatigue) was assessed quantitatively with a validated questionnaire or subscale explicitly measuring secondary traumatization; and (3) English or German language original papers. Results: We found low levels of secondary traumatization in first responders. Several studies describe protective and risk factors for secondary traumatization, including pretraumatic (e.g. age, gender), peritraumatic (e.g. exposure, emotional exhaustion), and post-traumatic factors (e.g. social support, alcohol and tobacco use). Conclusion: Next to an immunizing effect, the low prevalence of secondary traumatization in first responders could be explained by social desirability and job-loss concerns. Therefore, we may be underestimating the prevalence of secondary traumatization in first responders. Some resilience (social support) and risk factors (female gender) are consistent with previous research in other populations. However, owing to the cross-sectional study designs, we must interpret resilience and risk factors with caution. Future research should focus on longitudinal study designs and preventive as well as curative interventions.

Antecedentes: No es fácil encontrar definiciones precisas de estrés traumático secundario, traumatización vicaria y fatiga de compasión. Mientras algunos investigadores definen estos términos de forma diferencial, otros los usan indistintamente. En esta revisión consideramos estos tres fenómenos como traumatización secundaria.Objetivos: Esta revisión sistemática tiene por objetivo proveer de una visión general de la prevalencia de tasas de traumatización secundaria en personal encargado de prestar primeros auxilios y aclarar los factores de riesgo y resiliencia relacionadas.Mtodos: Tras identificar 219 estudios en búsquedas en bases de datos y 2192 referencias identificadas a través de búsqueda manual, 31 estudios fueron incluidos en esta revisión. Sistemáticamente buscamos en las bases de datos electrónicas: PubMed, PsychInfo y PSYNDEX (base de datos alemana). Se aplicaron los siguientes criterios de inclusión: (1) los participantes tenían que ser personas encargadas de prestar primeros auxilios en terreno: oficiales de policía, bomberos, personal de búsqueda y socorristas, equipos paramédicos y de emergencia, (2) traumatización secundaria (estrés traumático secundario/traumatización vicaria/fatiga de compasión) evaluada cuantitativamente con un cuestionario o sub-escala validados para medir explícitamente traumatización secundaria, (3) artículos originales en inglés o alemán.Resultados: Encontramos bajos niveles de traumatización secundaria en personal encargado de prestar primeros auxilios. Varios estudios describen factores de protección y de riesgo para traumatización secundaria, incluyendo factores pre- (ej. edad, género), peri- (ej. exposición, agotamiento emocional), y post-traumáticos (ej. apoyo social, uso de tabaco y alcohol).Conclusión: Además de un efecto inmunizante, la baja prevalencia de traumatización secundaria en personal encargado de prestar primeros auxilios podría ser explicada por aceptación social y preocupaciones respecto a pérdida de empleo. Por lo tanto, podríamos estar subestimando la prevalencia de traumatización secundaria en esta población. Algunos factores de resiliencia (apoyo social) y de riesgo (género femenino) son consistentes con investigaciones previas en otras poblaciones. Sin embargo, al tratarse de diseños de estudios transversales, debemos interpretar la resiliencia y factores de riesgo con cautela. Investigaciones futuras deberían enfocarse en estudios de tipo longitudinal así como también en intervenciones preventivas y curativas.

Psychological burden and resilience factors in patients with Alveolar Echinococcosis - A cross-sectional study.

BACKGROUND: Alveolar echinococcosis (AE) is a parasitic zoonosis resembling malignancy due to its clinically silent infiltrative growth, predominately in the liver. The comorbid psychological burden and fear of disease progression in AE patients have hardly been examined to date. The aim of this study was to evaluate depression, anxiety, quality of life, and fear of disease progression in AE patients. METHODOLOGY/PRINCIPAL FINDINGS: In a cross-sectional study, n = 57 AE patients were invited to report on depression (PHQ-9), anxiety (GAD-7), somatic symptom load (SSS 8), trauma symptoms (PTSS-10), quality of life (SF-12) and on fear of disease progression (FoP-Q-SF) using validated psychometric instruments. Furthermore, attachment style was assessed (RQ-2). N = 47 patients completed the questionnaires (response rate 82.5%). Depression, anxiety, and somatic symptom load were above norm sample means, while physical quality of life was below norm sample means. Existing traumatic symptoms were comparable to those in cancer patients, while fear of disease progression even exceeded cancer patient scores. Patients with a secure attachment style showed less pronounced psychological burden than patients with other attachment styles. Adequate, guideline-based depression and anxiety treatment was very rarely installed. CONCLUSION/SIGNIFICANCE: The present study revealed remarkable levels of psychological burden in AE patients. In our study sample, we discovered high depression and anxiety levels, a significant reduction of physical quality of life, and fear of disease progression. These results show how important it is for AE patients to be thoroughly assessed with regard to psychological symptoms and mental disorders so that those in need can receive sufficient psychosocial support and treatment according to official guidelines.