Background Rare cancers here defined as those with an annual incidence rate less than 6/100,000 in Europe, pose challenges for diagnosis, treatments, and clinical decision-making. Information on rare cancers is scant. We updated the estimates of the burden of rare cancers in Europe, their time trends in incidence and survival, and provide information on centralization of treatments in seven European countries. Methods We analysed data on more than two million rare cancer diagnoses, provided by 83 cancer registries, to estimate European incidence and survival in 2000-2007 and the corresponding time trends during 1995-2007. Incidence rates were calculated as the number of new cases divided by the corresponding total person years in the population. Five-year relative survival (RS) was calculated by the Ederer-2 method. Seven registries
Objective: Patients with rare cancers may experience different unmet needs than those with common cancer. The objective of this systematic review was to (1) investigate unmet supportive care needs of rare cancer patients throughout the disease trajectory and (2) identify predictive factors for these unmet needs.Methods: PubMed, PsycINFO and CINAHL were searched for publications (January 2011 to March 2021) focusing on unmet needs of patients with rare cancer. Two reviewers independently selected studies, extracted data and performed quality assessment. Findings were synthesised.
Results:The search yielded 4,598 articles, of which 59 articles met eligibility criteria and 57 were of medium or high quality. Rare cancer patients most frequently reported unmet needs in the healthcare system and information domain (up to 95%), followed by the psychological domain (up to 93%) and the physical and daily living domain (up to 80%). Unmet needs were mainly reported in the posttreatment phase.The most frequently identified predictors were higher anxiety, younger age and higher neuroticism.
Conclusion:Patients with rare cancer have unmet needs throughout their disease trajectory. Supportive care needs of rare cancer patients should be addressed individually, depending on the rare cancer subdomain and phase of disease and from diagnosis onwards.
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