OBJECTIVE: The aim of this study was to analyse longitudinal development of prognostic awareness in advanced cancer patients and their families. METHODS: This was a longitudinal cohort study, involving 134 adult cancer patients, 91 primary family caregivers and 21 treating oncologists. Key eligibility criterion for patients was life expectancy less than 1 year (estimated by their oncologists using the 12-month surprised question). Structured interviews, including tools to measure prognostic awareness, health information needs, and demographics were conducted face to face or via phone three times over 9 months. Forty-four patients completed all three phases of data collection. RESULTS: Only 16% of patients reported accurate prognostic awareness, 58% being partially aware. Prognostic awareness of both patients and family caregivers remained stable over the course of the study, with only small non-significant changes. Gender, education, type of cancer, spirituality or health information needs were not associated with the level of prognostic awareness. Family caregivers reported more accurate prognostic awareness, which was not associated with patients' own prognostic awareness (agreement rate 59%, weighted kappa 0.348, CI = 0.185-0.510). CONCLUSIONS: Prognostic awareness appears to be a stable concept over the course of the illness. Clinicians must focus on the initial patients' understanding of the disease and be able to communicate the prognostic information effectively from the early stages of patients' trajectory.

• MeSH
• kohortové studie MeSH
• lidé MeSH
• longitudinální studie MeSH
• nádory * terapie   MeSH
• osoby pečující o pacienty * MeSH
• prognóza MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH

OBJECTIVES: Prognostic awareness relates to patients' capacity to understand their prognosis and the likely illness trajectory. Based on the current evidence, accurate PA is associated with decrease in uncertainty, depresivity, and anxiety and with increase in quality of life. However, other studies found also negative associations of PA and quality of life and mental health. This systematic review synthesizes the available literature on factors associated with accurate prognostic awareness in patients with cancer. METHODS: Four databases were systematically searched for studies assessing prognostic awareness in patients with cancer. In these studies, we looked for factors positively or negatively associated with prognostic awareness. Included studies were critically appraised for methodological quality. RESULTS: We screened 28 078 studies and included 70. In these studies, 102 factors were found to be related to prognostic awareness positively or negatively. Identified factors were divided into seven groups: demographic factors, factors related to coping, health condition factors, psychological factors, factors associated with end-of-life care, factors related to communication, and factors related to relatives. Prognostic awareness differs according to age, personality, communication with doctor, disease stage, or being outpatient. For some factors such as depression, anxiety, or quality of life, higher level of these factors was found to be associated with accurate and inaccurate prognostic awareness. CONCLUSIONS: Prognostic awareness is a complex phenomenon associated with various positive and negative associations for patients with cancer. Clinicians must consider individual preferences and values of patients and their families when discussing prognosis and must be prepared for potential adverse outcomes.

• MeSH
• adaptace psychologická MeSH
• dospělí MeSH
• kvalita života psychologie   MeSH
• lidé středního věku MeSH
• lidé MeSH
• nádory psychologie   MeSH
• péče o umírající psychologie   MeSH
• péče v hospici psychologie   MeSH
• prognóza MeSH
• uvědomování si MeSH
• úzkost psychologie   MeSH
• Check Tag
• dospělí MeSH
• lidé středního věku MeSH
• lidé MeSH
• mužské pohlaví MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH
• systematický přehled MeSH

INTRODUCTION/OBJECTIVES: Fertility preservation is a major concern for adolescent cancer patients; yet, educational gaps remain. Our intervention study examined whether specially designed educational materials regarding fertility preservation increase knowledge and empowerment of patients and parents. METHODS: Eleven paediatric-oncological centres in four European countries agreed to enrol all eligible patients and parents in a questionnaire survey at 3 and 6 months after diagnosis. Treating physicians were surveyed on their medical consultation regarding fertility. RESULTS: Educational intervention increased knowledge in both patients (n = 113 and n = 101 in the control and intervention groups, respectively) and parents (n = 111 and n = 99 in the control and intervention groups, respectively), but the difference did not achieve statistical significance (knowledge difference patients: 5.6% (t0)/13.1% (t1); parents: 6.4% (t0)/3.8% (t1)). Parents of older patients (OR = 1.3, 95%CI = 1.1-1.7) and higher educational groups (OR = 6.2, 95%CI = 2.1-18.3) in the intervention group (OR = 1.9, 95%CI = 1.03-3.7) achieved higher knowledge levels. Empowerment was significantly improved in both patients (p = 0.046, d = 0.27) and parents (p = 0.046, d = 0.48) in the intervention group. DISCUSSION/CONCLUSIONS: In our study, the use of specifically prepared flyers and brochures successfully raised the level of fertility preservation knowledge in parents of older patients as well as parents with higher educational levels. Overall, the intervention improved patient and parent empowerment. Subsequent projects will include simpler information and digital material to particularly reach out to younger and less educated individuals.

• MeSH
• empowerment * MeSH
• lékařská onkologie organizace a řízení   MeSH
• lidé MeSH
• mladiství MeSH
• nádory terapie   MeSH
• vzdělávání pacientů jako téma metody   MeSH
• zachování plodnosti metody   psychologie   MeSH
• zdraví - znalosti, postoje, praxe * MeSH
• Check Tag
• lidé MeSH
• mladiství MeSH
• mužské pohlaví MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH
• Geografické názvy
• Evropa MeSH