Patient-reported outcome measures of the impact of cancer on patient’s everyday lives: a systematic review

Purpose: Patients with advanced disease are living longer and commonly used patient-reported outcome measures (PROMs) may miss relevant elements of the quality of extended survival. This systematic review examines the measures used to capture aspects of the quality of survival including impact on patients’ everyday lives such as finances, work and family roles. Methods: Searches were conducted in MEDLINE, EMBASE, CINAHL and PsycINFO restricted to English language articles. Information on study characteristics, instruments and outcomes was systematically extracted and synthesised. A predefined set of criteria was used to rate the quality of studies. Results: From 2761 potentially relevant articles, 22 met all inclusion criteria, including 10 concerning financial distress, 3 on roles and responsibilities and 9 on multiple aspects of social well-being. Generally, studies were not of high quality; many lacked bias free participant selection, had confounding factors and had not accounted for all participants. High levels of financial distress were reported and were associated with multiple demographic factors such as age and income. There were few reports concerned with impacts on patients’ roles/responsibilities in everyday life although practical and emotional struggles with parenting were identified. Social difficulties were common and associated with multiple factors including being a caregiver. Many studies were single time-point surveys and used non-validated measures. Exceptions were employment of the COST and Social Difficulties Inventory (SDI), validated measures of financial and social distress respectively. Conclusions: Impact on some important parts of patients’ everyday lives is insufficiently and inconsistently captured. Further PROM development focussing on roles and responsibilities, including work and caring for dependents, is warranted. Implications for Cancer Survivors: Factors such as finances, employment and responsibility for caring for dependents (e.g. children and elderly relatives) can affect the well-being of cancer survivors. There is a need to ensure that any instruments used to assess patients’ social well-being are broad enough to include these areas so that any difficulties arising can be better understood and appropriately supported

Second thoughts about implementing routine screening of cancer patients for distress

Recommendations for routine screening of cancer patients for distress lack evidence that screening improves patient outcomes. Settings contemplating screening should consider other options for using the same resources. This article reviews evidence relevant to decision making and calls attention to limits in using screening instruments cross-culturally and for triaging patients for receipt of services. Whether screening is the best option depends on the patient population, culture, and health system

Emotional impact on the results of BRCA1 and BRCA2 genetic test: an observational retrospective study

BACKGROUND: BRCA1 and BRCA2 mutations are associated with a higher risk of breast and ovarian tumors. This study evaluated the emotional states of women 1 month after having received the results of the genetic test and assessed eventual associations with the type of outcome, personal/familiar disease history and major socio-demographic variables. METHODS: The study, an observational retrospective one, involved 91 women, evaluated 1 month after receiving their results. Patients were administered the Hospital Anxiety and Depression Scale, the Profile of Mood States and emotional Thermometers. RESULTS: Anxiety was significantly higher than depression (p < 0.001), and 21.3% and 21.3% of the sample were, respectively, possible and probable cases for anxiety, whereas 13.5% and 10.1% were possible and probable cases for depression. Within the six mood states, Confusion-Bewilderment (M = 48.5) was the lowest, whereas Fatigue-Inertia (M = 52.3) was the highest. Differences were recorded within the ten assessed emotions too. Being a proband/nonproband and being or not a cancer patient were associated with many tested variables. CONCLUSION: The psycho-emotional screening of women undertaking genetic counseling is relevant and should cover a large range of dimensions

Mad Men in Bib Overalls: Media's Horrification and Pornification of Rural Culture

The media play a key role in stereotyping as "ignorant and uncouth hillbillies" people who live in rural US communities. As well, since the early 1970s, popular films frequently portray rural areas as dangerous locations, places where urban people are at high risk of being savagely killed and tortured by demented, in-bred locals without conscience or constraint. Further, with the advent of the Internet, rural women continue to be depicted in a degrading, highly sexualized manner and "gonzo" pornographic videos of them are widely and freely accessible. Informed by feminist and cultural criminological modes of inquiry, this paper presents some exploratory research on rural horror films and pornographic videos. A key argument is that with the help of new information technologies, these media are normalized, mainstreamed, and contribute to the horrification/pornification of rural culture, and by doing so, mask the real issues about crime, violence, and gender relations in the rural context

III Edizione di "Leggiamoci con cura. Scrittura e narrazione di s\ue9 in medicina"

Il volume raccoglie gli Atti della III Edizione del Convegno di Medicina Narrativa organizzato, il 24 ottobre 2013, dall'IRCCS (Istituto di Ricerca e Cura a Carattere Scientifico) CRO (Centro di Riferimento Oncologico) di Aviano (Pordenone). Fra gli altri vi sono due contributi di medici (Catallozzi, pp. 75-84) e studenti (Slater, pp. 108-113) della Facolt\ue0 di Medicina della Columbia University di New York