Background The What Matters Most (WMM) study was initiated to evaluate symptoms, AD-related impacts, treatment-related needs, preferences, and priorities among individuals with or at risk for Alzheimer’s disease (AD) and their care partners. The objective of this qualitative study phase was to identify a comprehensive set of concepts of interest that are meaningful to individuals across the AD continuum. Methods Interviews were conducted with 60 clinically referred individuals and care partners across 5 AD stages ( n = 12 each): group 1 (non-clinically impaired individuals with AD pathology), group 2 (individuals with mild cognitive impairment and AD pathology), group 3 (individuals with mild AD), group 4 (individuals with moderate AD and their care partners), and group 5 (care partners of individuals with severe AD). Interviews were conducted by experienced interviewers, audio-recorded, and transcribed. Dominant trends were identified in each interview and compared across subsequent interviews to generate themes or patterns in descriptions of AD symptoms, impacts, and desired treatment outcomes. Results All participants endorsed current issues related to memory; nearly all participants ( n = 55; 92%) across the five groups endorsed symptoms related to communication and language. Groups 1–3 reported an impact on mood/emotions ( n = 23; 64%) and a decrease in social activities or outgoingness ( n = 17; 47%). Current and future concerns reported by the overall sample included memory ( n = 48; 80%), dependence ( n = 40; 67%), and “other” concerns ( n = 33; 55.0%) (e.g., uncertainty about the future, burdening others). The most desired AD treatment outcomes were improvement or restoration of memory ( n = 40; 67%) and stopping AD progression ( n = 35; 58.3%). Group-level differences were observed in the symptoms, impacts, and desired treatment outcomes among patients and care partners across the AD continuum. Conclusions Cognitive functioning issues—particularly in memory and communication—are present even in preclinical and early-stage AD, including among those without a formal AD diagnosis. While the impacts of AD vary across the disease-severity spectrum, improved memory and disease modification were treatment outcomes considered most important to participants across all 5 AD stages. Neuropsychological assessments traditionally used in AD clinical trials may not evaluate the often-subtle concepts that are important to patients and care partners. Results from this study will inform the second phase of the WMM project—a quantitative study to elicit the relative importance of these concepts of interest to people at risk for and living with AD and their care partners.

There has been an increase in the prevalence of adults diagnosed with and treated for primary brain tumors. Cognitive deficits are a common long-term effect in brain tumor survivors. The objective of this paper is to examine whether these deficits are specific to those diagnosed with and treated for a primary brain tumor. A systematic review of the medical literature from 2002 to 2012 was conducted to investigate neurocognitive deficits in brain tumor survivors (post-primary treatment) compared to healthy controls. Four studies were identified that met all inclusion criteria. Gliomas were the most common form of tumor included. Neuropsychological evaluation identified cognitive deficits in brain tumor survivors on tests of working memory, cognitive control and flexibility, cognitive processing speed, visual searching, planning and foresight, and general attention. While age, education, and gender can influence cognitive function, the present review indicates that deficits exist beyond those accounted for by these factors. Many primary brain tumor survivors are involved in roles (e.g., employee, parent, spouse/partner, student) that require optimal performance of these cognitive skills. Future research should evaluate brain tumor survivors on functional challenges resulting from these cognitive sequelae and develop effective ways to mitigate them.

Over the past three decades various definitions of cancer survivor and cancer survivorship have been proposed. These definitions frequently describe (1) who is considered a cancer survivor and who is experiencing cancer survivorship, (2) what it means to a be survivor and experience survivorship, and (3) when someone is considered a survivor and when survivorship begins. Descriptive epidemiology indicates that certain individuals diagnosed and treated for cancer describe the presence of specific unmet needs following diagnosis and treatment for cancer. Evidence also points to an increased likelihood of cancer recurrence or a new cancer in many cancer patients. These observations should be reflected in the case definitions of cancer survivor and cancer survivorship. This paper reviews the literature for evidence to validate existing definitions of cancer survivor and cancer survivorship and proposes updated definitions for each. Based on this evidence, a cancer survivor is defined as an individual diagnosed with cancer. The period following primary treatment, which is characterized by transitions in care and a need to address the late effects of cancer and its treatment, may be a particularly critical time for the cancer survivor. The definition does not preclude the major involvement of family, friends, caregivers, and providers, but does place the focus on the individual who received the diagnosis Resumen Durante las últimas tres décadas se han propuesto diversas definiciones del superviviente de cáncer y la supervivencia del cáncer. Estas definiciones describen con frecuencia (1) quién se considera un superviviente de cán-cer y quién experimenta la supervivencia del cáncer, (2) lo que significa ser superviviente y la experiencia de sobrevivir, y (3) cuándo se considera que alguien es un superviviente y cuándo comienza a ser un superviviente. La epidemiología descriptiva indica que ciertos individuos diagnosticados y tratados de cáncer describen la presencia de necesidades especí-ficas insatisfechas tras el diagnóstico y tratamiento para el cáncer. Los datos disponibles. apuntan a un aumento de la probabilidad de recurrencia del cáncer o un nuevo cáncer en muchos pacientes con cáncer. Estas observaciones deben reflejarse en las definiciones de caso del superviviente de cáncer y la supervivencia del cáncer. Este artículo revisa los datos relativos a la validez de las definiciones existentes de superviviente de cáncer y supervivencia del cáncer y propone definiciones actualizadas para cada uno. Con base en estos hallazgos, se define como superviviente de cáncer a un individuo diagnosticado con cáncer. El periodo que sigue al tratamiento primario, que se caracteriza por las transiciones en el cuidado y la necesidad de abordar los efectos tardíos del cáncer y su tratamiento, puede ser un momen-

Purpose: Geographic atrophy (GA), the advanced form of dry age-related macular degeneration, can result in irreversible blindness over time. We performed a systematic literature review to assess the humanistic and economic burden of GA. Methods: Predefined search terms were used to identify studies in PubMed, Embase, and Cochrane Library; conference abstracts also were searched. Results: Of 1111 unique studies identified, 25 studies on humanistic burden, 4 on economic burden, and 3 on both humanistic and economic burden of GA were included. Vision-related functioning and health-related quality of life (HRQOL) are poor in patients with GA. HRQOL is commonly measured using the 25-item National Eye Institute Visual Function Questionnaire (NEI VFQ-25); patients with GA have significantly lower composite and subscale scores for near activities, distance activities, dependency, driving, social functioning, mental health, role difficulties, color vision, and peripheral vision than individuals without GA. Driving is a particular concern, and inability to drive affects dependency. Vision-related quality of life (VRQOL) declines as GA progresses. While we identified only 7 reports describing the economic burden of GA, its direct costs may be substantial. In a US study, mean cost to the payer per patient with GA was $11,533 in the year after diagnosis. A multinational study estimated annualized total direct costs of €1772 per patient with GA, mainly driven by diagnostic tests and procedures (€1071). Patients with GA are at increased risk of falls and fractures, potentially increasing direct costs. Only one study evaluated indirect costs, estimating ~$24.4 billion in yearly lost wages among people with severe vision loss due to GA or drusen ≥125 μm. Conclusion: GA represents a significant humanistic burden. Evidence on the economic impact of GA is limited; characterizing the economic burden of GA requires further research. Interventions that reduce GA-related disability may improve HRQOL and reduce indirect costs.