Judicialization and cancer: quality of life of patients and caregivers in the COVID-19 pandemic.

BACKGROUND: In Brazil, cancer patients and caregivers of cancer patients seek judicial intervention for free access to medications from the public health system. Indeed, the COVID-19 pandemic potentially affected the health-related quality of life of cancer patients and caregivers of cancer patients. This study aimed to describe the sociodemographic profile and assess the health-related quality of life of patients and caregivers in the state of Goias, Brazil, in 2020. METHODS: A cross-sectional study was conducted using the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36) and a sociodemographic questionnaire. RESULTS: A total of 88 (67,7%) patients and 42 (32,3%) caregivers participated in the study, mostly women (55,5%); aged from 18 to 60 (66%) years old; with up to nine years of education (73,1%) and monthly family income lower than the minimum wage (69,2%); married or in a stable union (92,3%); living with multiple people in the same household (73,8%). The quality of life domains with the best scores were mental health for patients and pain for caregivers. The most affected quality of life domain was physical limitation for patients and caregivers. Factors associated with better quality of life were female gender and age between 18 and 60 years in patients, more than 9 years of education, living with multiple people in the same house, and having a monthly family income higher than US$200 for caregivers. CONCLUSION: The study found evidence of physical and emotional vulnerability during the pandemic, highlighting the need to strengthen public policies of assistance support to this population.

Judicialization of health: profile of demands for oncological medicines in a state in the central region of Brazil.

BACKGROUND: The significant increase in access to oncological medicines through court cases suggests that constitutional guarantees of integral and universal care in the Brazilian public health system are uncertain. METHODS: A retrospective observational study was conducted to analyze data from lawsuits requesting oncological medicines from 2014 to 2020 in the State of Goiás, Brazil, in state and federal courts. Sociodemographic, medical, and legal variables were statistically examined using descriptive, association, and correlation methods. RESULTS: Women brought more than half (54%) of the 301 processes analyzed. The most frequent age group was over 55 years, with income below 3 × the minimum wage (total about USD$600/month), and their cases were promoted through the public minister and public defender's offices. The most requested medications, not on official public health system lists, were indicated for multiple myeloma and brain cancer. CONCLUSIONS: Improved quality of life, frequently used as a justification, could be conceptually confused with increased survival. Finally, judicialization itself indicates that individual health needs arise even with properly defined and adequately implemented public policies. These needs should be considered for the adequate provisioning of services by the state to ensure the right to health.

Caregivers of Individuals with Cancer in the COVID-19 Pandemic: A Phenomenological Study.

Caregivers of individuals with cancer in the COVID-19 pandemic are faced with the demands of cancer and the health needs produced by it, along with their own health and self-care needs, and the uncertainties of expectations and risks. A qualitative analytical phenomenological study with caregivers of individuals with cancer registered at the state referral hospital supplying medications, who answered the sociodemographic assessment questionnaires and semi-structured questions about their feelings and perceptions in the COVID-19 pandemic. Bardin's content analysis was used, with methodological quality assessed using SRQR Standards for Reporting Qualitative Research and the MAXQDA software. Most of the caregivers are women, married, Catholic, of low income and education, aged between 30 and 60 years, optimistic, comply with health guidelines regarding social distancing, use of masks, and routine hand hygiene, do not practice regular physical activities, mention concern for their own physical and financial survival, and that of their family. The main need identified in the affective sphere was to reframe contact with family members, seeking to strengthen the bonds of affection. The feeling of emotional vulnerability shows the importance of building effective public policies for social support consistent with the improvement of health care for this population.