Judicialization and cancer: quality of life of patients and caregivers in the COVID-19 pandemic
Health and Quality of Life Outcomes volume 21, Article number: 87 (2023)
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.
A cross-sectional study was conducted using the Medical Outcomes Study 36—Item Short Form Health Survey (SF-36) and a sociodemographic questionnaire.
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.
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.
Since the beginning of 2020, the novel coronavirus (COVID-19) brought isolation [1, 2], the recognition of a global pandemic , and transmission in households and hospitals , and there is still much to learn about the susceptibility of groups of individuals with comorbidities.
The increased risk of non-transmissible chronic diseases, such as cancer, may be related to immunosuppression resulting from antineoplastic treatment and tumor malignancy . However, cancer treatments and surgeries were suspended due to the pandemic [6,7,8], and treatment initiation was postponed, with possible future effects on cancer mortality [9, 10].
The success of oncological treatment is primarily determined by early diagnosis and adequate treatment . However, the public health infrastructure responsible for cancer care does not promote quick access to cancer medications, mainly due to the high cost of treatment, generating inequities in access to treatment at individual and social levels [12, 13].
Meanwhile, cancer is a global health problem. In 2020, there were an estimated 19,292,789 new cases in both sexes and almost 10 million deaths from cancer worldwide . By 2040, it is estimated that there will be 28.4 million new cases .
Indeed, in Brazil, in 2020, there were 592,212 new cases of cancer, the most prevalent, excluding non-melanoma skin cancers, prostate, breast, colorectal, lung, and thyroid cancer , of this total, 20,000 new cases in the state of Goias [17, 18].
The burden of cancer incidence and mortality is growing rapidly worldwide as a reflection of aging and population growth, combined with changes in the prevalence and distribution of the primary risk factors. Risk factors can be environmental, genetic, or rooted in behaviors, habits, or customs typical of a particular social and cultural environment .
However, despite being a significant cause of morbidity and mortality worldwide and a barrier to increasing life expectancy, the incidence is independent of the level of human development .
Quality of life is an individual subjective perception of significant life aspects that can be used to evaluate treatment effects in cancer patients. It allows physical health, emotional health, social relationships, environmental context, and spirituality to be assessed as a predictor of morbidity and mortality in cancer [20, 21].
In Brazil, health is a constitutional right, so public policies are put in place that guarantee access to medications . Brazil constitutionally recognises full and universal access to medicines as part of the right to health, with a view to health with quality of life, and adopts public policies to guarantee it [22, 23].
In cancer, public access to treatment is carried out in 317 centers or units of high complexity in oncology enabled by the Ministry of Health, distributed throughout the Brazilian territory, to standardize and acquire the medicines and promote the appropriate treatment [14, 19].
Despite this, since the beginning of the unified health system (SUS, Brazilian national public health), the Brazilian population has used the judicial system to secure this right and gain access to the medications they need. This phenomenon is called the judicialization of pharmaceutical care and began with demands for antiretrovirals in the 1990s .
The judicialization of pharmaceutical assistance related to antineoplastic drugs has increased significantly in recent years and represents an important mechanism for access to medicines in the SUS [25, 26].
The judicialization reverses the organization of the system and changes its functioning in the provision of care, because it highlights that there are failures in public access to comprehensive and equitable assistance provided in the Federal Constitution [25, 26].
Cancer is recognized as a family disease due to the structural, socioeconomic, and emotional changes caused by the disease that affect all individuals in the family nucleus, and health care should be extended in this context [27, 28].
Cancer patients resort to the judiciary to request medication for various reasons, such as when a medication is not registered with the National Health Surveillance Agency (ANVISA), the medication is not described in the Clinical Protocols and Therapeutic Guidelines (PCDT) as being a therapy of choice, or even when standard front-line drugs are out of stock in the public service [29, 30]. In addition, caregivers can request judicial intervention on behalf of the individual requesting medication, an elderly patient, a child, or a patient with a disability or a rare disease .
Judicial intervention in SUS managerial activities impacts individual patients by enabling access to medications for prescribed treatments and the possibility of a better prognosis for cancer. It also has social impacts, promoting an imbalance in public health expenditures. The judicialization phenomenon involves political, social, ethical, and health aspects, which go far beyond its legal component and the management of public services .
This study aimed to describe the sociodemographic profile and evaluate the HRQoL of cancer patients and informal or family caregivers of cancer patients during the COVID-19 pandemic who requested medication through administrative and judicial channels in the state of Goias—Brazil in 2020.
A cross-sectional study was carried out from March 2020 to March 2021 at a state reference center for the supply of high-cost medicines (CEMAC) in the state of Goias, Brazil.
Of the 377 total individuals (patients or caregivers) registered at CEMAC in 2020 to receive cancer drugs, all patients and caregivers aged 18 years or older who received antineoplastic drugs were included regardless of the type of cancer, stage of the disease, and amount of medication received. Registered patients who had their treatment medically suspended and registered caregivers with no direct link with the individual with cancer (medical transport driver, health unit secretary, lawyer) were excluded.
The intentional sample consisted of 130 participants, 88 patients, and 42 caregivers, according to the flowchart (Fig. 1).
For data collection, two questionnaires were used, one sociodemographic and the other assessing quality of life, the Medical Outcomes Study 36—Item Short Form Health Survey (SF-36). These were sent electronically on WhatsApp (Meta Inc. Menlo Park, CA, USA) and by e-mail, along with the research consent and clarification form in three successive invitations (in March, June, and December 2020).
The sociodemographic questionnaire included the type of respondent (individual with cancer or caregiver), age, sex, education, living in a household with multiple people, family income, religion, marital status, and the route of requesting the medication (administrative or judicial). In addition, the Brazilian version of the SF-36 instrument was used to assess the outcome variable (quality of life) .
The SF-36 was developed in 1992 by Ware and Sherbourne and validated in Brazil by Ciconelli et al. [33, 34]. The Portuguese version was chosen because it is validated and reproducible in the socioeconomic and cultural conditions of the Brazilian population. It is recognized as an instrument to assess quality of life, used in population surveys, health policy studies, and health condition assessment studies [34,35,36,37,38,39].
The instrument has 36 items forming 8 domains: Functional Capacity (FC) with 10 items, Physical Aspects (PA) with 4 items, pain with 2 items, General Health Status (GHS) with 5 items, Vitality (VIT) with 4 items, Social Aspects (SA) with 2 items, Emotional Aspects (EA) with 3 items, Mental Health (MH) with 5 items and a comparative assessment question between current health conditions and that of a year earlier. Physical health includes the first four domains (FC, PA, Pain, and GHS), and mental health the last four (VIT, SA, EA, and MH).
The scores obtained are calculated using pre-established norms, and the values of the questions are transformed into scores for eight domains from 0–100. Each domain is analyzed separately. The instrument also includes a non-scored question (question no. 2) that aims to compare health changes that occurred in one year .
By combining the scores of each dimension, the SF-36 allows 2 integrated components to be calculated: the physical health component (PHC) and the mental health component (MHC) . The PHC comprises the following dimensions: functional capacity (performing daily activities, such as the ability to take care of oneself, get dressed, shower, and climb stairs); physical aspects (impact of physical health on the performance of daily or professional activities); pain (pain level and impact on performing daily or professional activities); general health status (subjective perception of general health status). The MHC comprises the following dimensions: vitality (subjective perception of health status); social aspects (reflection of physical health condition on social activities); emotional aspects (reflection of emotional conditions on performing daily or professional activities); and mental health (mood and well-being scale).
The SF-36 presents a final score from zero to one hundred (0–100), where zero corresponds to the worst general health status and one hundred to the best health status. The survey questions were structured in scales with different scoring possibilities (1 to 6; 1 to 5; 1 and 2; 1, 2, and 3). The intensity can increase or decrease according to the question.
Microsoft® Excel 2019 program was used for data tabulation. The statistical program adopted for data analysis was SPSS version 28.0.1 [SPSS Inc., Chicago, IL, USA] for Windows.
The normality of the data was obtained parametrically by the bootstrap method . The method allows resampling of the original sample with replacement, and, for each resampling, the estimate of interest is calculated . In this study, the resample was 1000. In addition, Shapiro–Wilk and Kolmogorov–Smirnov tests were performed to calculate normality.
Cronbach's Alpha internal consistency test was used to test the survey's reliability. For the descriptive analysis of the profile data, respondents (patient and caregiver, total and by group), means, and standard deviations were calculated. The variables evaluated were sex, age, education level, marital status, other household members living with the patient, family income, and religion.
Pearson's correlation was used to compare the SF-36 domains, considering r = 1 as perfect, r > 0.7 strong, r > 0.5 moderate, r < 0.5 weak, and r = 0 as no correlation. The significance level adopted in the study was 5%.
Logistic regression was performed to control the confounding variables between the independent variables and the outcome (generalized linear model), considering statistical significance (p < 0.05).
The research involved human beings and complied with the ethical and legal precepts regulated by the National Health Council according to Resolutions No. 466/2012 and No. 510/2016 and was submitted to the Research Ethics Committee of the Federal University of Goias, decision no. 2.831.905 – CAAE 93238318.7.0000.5083 [42, 43].
Demographical characteristics of participants
The majority of participants were women, 18–60 years old, with up to 9 years of education, income up to 1 × the minimum wage (in 2020, which was R$1.045,00 or about USD$200 per month), married or in a stable relationship, who live with more people in the same household and declared having a religion. Access occurred through individual lawsuits. In addition, informal or family caregivers participated in the study (Table 1).
Health-related quality of life
The domains of the outcome variable (quality of life) were analyzed using the SF- 36 Health Survey scores, the mean, and the respective standard deviation. It was observed that the domains with the highest means were pain (56.64, SD 7.60) and mental health (56.12, SD 2.92), and the most affected domain was physical limitation (mean 39.20, SD 7.32), both among patients and caregivers. Again, there was no significant difference between the type of respondent, with caregivers having higher scores in all domains than patients. However, it is notable that none of the mean scores ranging from 0–100 practically exceeded 60 (Table 2).
Correlation between scores of SF-36 instruments
In the correlation between the SF-36 domains, for the patient group, there was a statistically significant mild to moderate positive correlation among all the SF-36 domains, except functional capacity and mental health.
The synthesized components showed a moderate to very strong positive correlation with the SF-36 domains and a very strong correlation with each other. The Physical Health Component correlated with the Pain, Physical Capacity, and Physical.
Limitations domains, while the Mental Health Component presented a very strong correlation with the Physical Limitations, Pain, Emotional Aspects, and Mental Health domains (Table 3).
In the group of caregivers, moderately intense positive correlations were identified between the functional capacity and pain domains; physical limitation and vitality and emotional aspects; and between pain, social aspects, and emotional aspects (Table 4).
The synthesized components showed a mild to very strong positive correlation with the SF-36 domains and a very strong positive correlation with each other. The physical health composite score showed the strongest correlations with the Pain and Emotional Aspects domains, while mental health showed the strongest correlations with the Vitality, Social Aspects, and Emotional Aspects domains (Table 4). However, comparing these variables does not suggest a cause-and-effect relationship between them, but it signals a direction and convergence of this association.
The generalized linear regression analysis results show no difference between the access routes (administrative and judicial). However, being between 18 and 60 was significantly different from being over 60. As well as concerning the number of residents in the household, living with more people was significant. In terms of income, it was significant to have an income above the minimum wage compared to those below the minimum wage concerning the Physical Component (Table 5).
The factors potentially associated with a worse quality of life in patients are: being male and being over 60 years of age. Regarding the caregiver: having less than 9 years of education, living alone, and having a family income of up to 1 × MW (Table 6).
The profile of study participants, mostly adult women, with a partner, with income below the national minimum wage and fewer than nine years of education, is similar to other national and international studies with individuals with cancer and caregivers [45,46,47,48,49,50].
Women's high participation in health services has been frequently noted and may suggest more concern for self-care [51,52,53,54,55,56,57,58,59]. In addition, the role of caregivers is highlighted, as cancer is a family disease, and care is still an essentially female activity in Brazilian culture [60,61,62,63].
In most cases, a family member becomes a caregiver out of necessity. They are commonly wives or daughters who have trouble in formal jobs or are even forced to abandon them, adversely affecting the family's income, and overwork causes adverse effects on the caregiver's quality of life [64, 65]. This study's profile of adult women as informal caregivers is in line with other studies [66,67,68,69].
Men's involvement in care, especially for the elderly, has increased in recent years, although there is little research on informal care provided by male family members. A recent study reveals the strain and social isolation associated with male caregiving, as well as the gratitude and reciprocity that results .
Care as a profession with formal caregivers has been recognized since 2011 in the national register of occupations ; however, in this study, only family caregivers, also called informal caregivers, participated. These caregivers are not formally recognized professionals and do not have the rights typically associated with a formal job.
The economic classes are a group of people with similar cultural, political, and economic standards, which can be divided in descending order in relation to household income into A, B, C, D, E. Most participants reported an income of up to 1 × the minimum wage, R$1,045.00 (about USD$200) in 2020 , belonging to economic classes D and E . This income corresponds to a lower level than the average real per capita income in the country , negatively impacting the quality of life of caregivers in the study and possibly reflecting the COVID-19 global pandemic on the income of this population.
COVID-19 greatly affected the economy, exacerbating unemployment and informality. In the last quarter of 2020, the official unemployment rate was 13.9% , causing an increase in informal work and demanding a state protection network with public policies to combat poverty [67, 68, 71, 72]. Even so, informality in the economy reached 40%, indicating economic instability and the reduction of formal jobs [67,68,69,70,71].
Along with reducing income, rising unemployment during the pandemic suggested many men were present in their homes helping to care for their family members with cancer. However, despite this, the division of tasks is still unequal, with care activities naturalized as female [60, 66, 73] aggravated by the pandemic that amplified inequality and reduced women's incomes, especially .
The predominant age group was between 18 and 60 years old, married or with a partner. Individuals over 60 years of age have fragile economic and labor situations, mostly in informal activities, with a sharp decrease in income and a lower socioeconomic level during the pandemic [73,74,75].
In 2019, in Brazil, more than 120,000 deaths from cancer were recorded in individuals aged 30 to 69 years. Furthermore, it is considered the leading cause of death from chronic non-communicable diseases among women as of 2014 .
The elderly is more susceptible to loneliness, reinforced by the social isolation imposed by the pandemic, with damage to physical and mental health [77, 78]. It is reinforced that loneliness is a significant predictor of mortality and functional capacity decline that needs to be evaluated as a significant risk factor [78, 79].
Regarding the quality of life domains, the highest scores were for Mental Health (mean 55.11 ± 2.25) and social aspects (mean 54.23 ± 3.07) among patients, which contributed to increasing mental health scores to the detriment of physical health. Among caregivers, the highest scores were pain (mean 63.25 ± 4.33) and mental health (mean 57.14 ± 3.17).
The worst scores were in Physical Limitation both for patients (mean 34.87 ± 4.99) and caregivers (mean 43.53 ± 6.71). The physical limitation score in caregivers contributed to reduced cumulative physical health scores compared to mental health.
It is noteworthy, in this study, that the mean values of the scores of the domains were low; practically, they did not exceed 60, even in caregivers. The pandemic was possibly responsible, and the need for improved health to improve and prolong life is highlighted .
The Mental Health domain (D8) assesses depression, anxiety, behavioral changes or emotional lack of control, and psychological well-being . Higher patient scores were positive findings regarding cancer and the pandemic, possibly representing optimism regarding the disease, the pandemic, and the treatment.
Reduced mental health scores would be expected since individuals and their caregivers live with pain, disfigurement, dependence, isolation, side effects of treatment, and routine and even unexpected hospital admissions [47, 86].
Emotional state can influence daily activities, interfere with the ability of the individual with cancer to function, and make them feel dissatisfied with their family and social and environmental reality. This loss can perpetuate over time and lead to a functional disability with decreased autonomy and social life .
The mental health domain allied to the domains emotional aspects, social aspects and vitality integrate the mental component of the SF-36 instrument , and in the present study they demonstrated that the physical component had greater impairment than the mental one.
The pain domain (D3) includes two items ranging from 0–80. Pain influences patients' quality of life by causing suffering and disabilities, in addition to uncertainties and concerns in daily life .
A recent systematic review on pain found its high prevalence in cancer. In fact, the intensity is moderate to severe in almost 40% of individuals undergoing treatment .
The WHO 2016 estimated that pain in almost 90% of cancer patients could be controlled with simple interventions ; however, many studies demonstrate that pain control in these cases is difficult. For example, in the study of 114 American oncology units with 810 individuals, 25% of the participants reported that most of the time, they lived with constant or intense pain that impacted their life and appeared to impair their quality of life .
Indeed, pain is associated with depression and anxiety, and negative impacts on quality of life are suggested in some studies [95,96,97]. Considering that the caregiver is not undergoing health treatment, the positive result obtained in this study is expected.
A study on quality of life in cancer patients in China highlighted the impact of pain on quality of life, with better quality of life associated with lower pain intensity, highlighting the importance of effective control in this population. Other studies have also demonstrated this direct influence on quality of life in Brazil [47, 98].
Spirituality as a tool to cope with pain can manifest from practicing religion, constituting an essential component of health care , and in this study, religious practice was present for most participants.
The physical limitation domain (D2) is related to problems with work or daily activities due to physical health . The expected result highlights these issues, considering the disease-caused limitations, the effects of treatments, the pain, and restrictions imposed by COVID-19 with social isolation. Physical limitations may include loss of function, muscle atrophy, and reduced range of motion; in addition, in chemotherapy or radiotherapy, fatigue can be one of the main consequences [47, 74], which in clinical practice is undervalued, but negatively impacts the quality of life and survival of individuals .
Cancer combined with medical therapies can limit the active participation of individuals with cancer in daily life activities, complicating their treatment 
Fatigue is a subjective feeling of physical tiredness that is disproportionate to the level of activity  and is a frequent symptom in chronic diseases such as cancer. It relates to the disease itself or the toxic effects of chemotherapy. Cancer patients may experience severe fatigue even after treatment ends .
Symptoms such as pain and fatigue affect physical and emotional function and may influence quality of life in general . In the present study, function was impaired and perceived in patients mainly.
The pandemic of COVID-19 has brought current problems with uncertainties and risks, but it will also face the future problem in the face of postponements and delays in surgeries and treatments, as well as drug shortages and inadequate health care, which have contributed to social isolation and feelings of fear, loneliness, and anxiety in individuals with cancer and also in caregivers [88, 107].
Furthermore, this logjam in cancer care suggests a future overload of health systems . In addition, the decrease in actions that promote early diagnosis and the need to adapt to prioritize suspected cases are reasons for concern, especially in low- and middle-income countries, since this will lead to cancer mortality in the future [109,110,111].
The pandemic highlighted a nationwide social rift, where changes in social routine due to the need for protective measures inevitably brought psychological, physical, social, and quality-of-life impacts perceived by the entire population. The depth of this issue was especially significant in individuals with cancer and their family nucleus, reinforcing the need to strengthen public policies that recognize and include patients and family caregivers as vulnerable.
The study had some strengths and limitations. Sending research instruments electronically was economically and logistically attractive and, even after the end of the pandemic period, deserves consideration and improvement. Another point worth noting is that the study group possibly has greater access to information and communication resources. We assumed that cancer affects the family, as it is considered a family disease; therefore, the SF-36 would be appropriate to obtain information from the patient and their caregiver. Potential limitations include that cancer stages and treatment protocols were not considered relevant, and the isolated impact of pandemic COVID-19 on participants' quality of life was not compared.
Availability of data and materials
Datasets generated or analyzed during the current study are not publicly available due to data privacy but are available from the corresponding author upon reasonable request.
Wang C, Horby PW, Hayden FG, Georges FG. A novel coronavirus outbreak of global health concern. Lancet. 2020;395(10223):470–3. https://doi.org/10.1016/S0140-6736(20)30185-9. ISSN 0140- 6736.
Zhou P, Yang XL, Wang XG, et al. A pneumonia outbreak associated with a new coronavirus of probable bat origin. Nature. 2020;579(7798):270–3. https://doi.org/10.1038/s41586-020-2012-7.
Worldometer, COVID-19 coronavirus pandemic. 2020. Available from: https://www.worldometers.info. (Accessed 01 July 2021).
Chan JF, Yuan S, Kok KH, et al. A familial cluster of pneumonia associated with the 2019 novel coronavirus indicating person-to-person transmission: a study of a family cluster. Lancet. 2020;395(10223):514–23. https://doi.org/10.1016/s0140-6736(20)30154-9.
Freeman V, Hughes S, Carle C, Campbell D, et al. Are patients with cancer at higher risk of COVID-19-related death? A systematic review and critical appraisal of the early evidence. J Cancer Policy. 2022;33:100340. https://doi.org/10.1016/j.jcpo.2022.100340. ISSN 2213-5383.
Al-Quteimat OM, Amer AM. The impact of the COVID-19 pandemic on cancer patients. Am J Clin Oncol. 2020;43(6):452–5. https://doi.org/10.1097/COC.0000000000000712.
Goldenberg D. A COVID-19 e possíveis consequências científicas da postergação de tratamentos. Revista Brasileira de Cirurgia Plástica. 2021;36(3):243. https://doi.org/10.5935/2177-1235.2021RBCP0090. Epub 18 Mar 2022. ISSN 2177-1235. [Accessed 5 Aug 2022].
Liang W, Guan W, Chen R, Wang W, Li J, Xu K, et al. Cancer patients in SARS-CoV-2 infection: a nationwide analysis in China. Lancet Oncol. 2020;21:3. https://doi.org/10.1016/S1470-.
Maringe C, Spicer J, Morris M, Purushotham A, Nolte E, Sullivan R, et al. The impact of the COVID-19 pandemic on cancer deaths due to delays in diagnosis in England, UK: a national, population-based, modelling study. Lancet Oncol Ago. 2020;21(8):1023–34. https://doi.org/10.1016/S1470-2045(20)30388-0.
Hartman HE, Sun Y, Devasia TP, Chase EC, Jairath NK, Dess RT, et al. Integrated survival estimates for cancer treatment delay among adults with cancer during the COVID-19 pandemic. JAMA Oncol. 2020;6(12):1881–9. https://doi.org/10.1001/jamaoncol.2020.5403.
Interfarma. Cancer in Brazil: the patient's journey through the healthcare systems and its social and financial impacts. Associação da Indústria Farmacêutica de Pesquisa (Interfarma); 2019:88. Available from: https://www.interfarma.org.br/app/uploads/2021/04/cancer-in-brazil-the-patient-5C-s-journey-in-the-healthcare-system-and-its-social-and-financial-impacts-interfarma.pdf.
Rocha Filho JA, Matta CBB, Silva TD, Paz Neta DC, et al. Analysis of financial sustainability to guarantee full access to cancer drugs. Res Soc Dev. 2021;10(16):e459101623883. Disponível em: https://rsdjournal.org/index.php/rsd/article/view/23883. Acesso em: 26 July 2022.
Ramsey SD, Bansal A, Fedorenko CR, Blough DK, et al. Financial insolvency as a risk factor for early mortality among patients with cancer. J Clin Oncol. 2016;34(9):980–6.
Piazza T, Izidoro JB, Portella MAMP, Panisset U, Guerra-Junior AA, Cherchiglia ML. Evaluation of Brazilian clinical guidelines in oncology: shortcomings in the rigor of development, applicability and editorial independence. Cad Saude Publ. 2021;37(4):e00031920.
Ferlay J, Soerjomataram I, Dikshit R, Eser S, Mathers C, et al. Cancer incidence and mortality worldwide: Sources, methods and major patterns in GLOBOCAN 2012. Int J Cancer. 2015;136(5):359–86. https://doi.org/10.1002/ijc.29210.
Sung H, Ferlay J, Siegel RL, Laversanne M, Soerjomataram I, Jemal A, Bray F. Global cancer statistics 2020: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin. 2021;71(3):209–49.
Ministério da Saúde (BR). Secretaria de Ciência, Tecnologia, Inovação e Insumos Estratégicos em Saúde. Síntese de evidências para políticas de saúde: judicialização da saúde [recurso eletrônico]. Brasília: Ministério da Saúde; 2020. p. 45. Available from: https://bvsms.saude.gov.br/bvs/publicacoes/sintese_judicializacao_saude.pdf. Accessed 31 jul 2022.
INCA. Instituto Nacional do Câncer José de Alencar Gomes da Silva (BR). Estimativa 2021: incidência de câncer no Brasil. INCA: Rio de Janeiro; 2020.
INCA. Instituto Nacional Do Câncer José de Alencar Gomes da Silva (BR). Onde tratar pelo SUS. Rio de Janeiro: Rede Câncer; 2021. n. 9, maio.
Aguiar SS. Qualidade de vida e sobrevida global após 5 anos de tratamento para câncer de mama em hospital de referência no Rio de Janeiro [dissertação]. Programa de Pós-Graduação em Saúde Pública e Meio Ambiente. Rio de Janeiro: Fundação Oswaldo Cruz; 2010.
Ferreira KL, Meireles JFF, Ferreira MEC. Evaluation of lifestyle and quality of life in the elderly: a literature review. Rev Brasil Geriatr Gerontol. 2018;21(5):639–51. https://doi.org/10.1590/1981.22562018021.180028.
Sobrinho LLP, Naspolini SHDF, Lima JHS. Direitos sociais e políticas públicas III. Florianópolis: CONPEDI; 2019. p. 28.
Brazil. Specialized Secretariat of Health Care. Ordinance n.1399, of December 17, 2019. Redefines the criteria and referential parameters for the qualification of health establishments in high complexity in oncology within the SUS. Official Gazette of the Union n.245, of December 19, 2019. https://www.in.gov.br/web/dou/-/portaria-n-1.399-de--/portaria-n-1.399-de-17-dezembro-de-2019-234338206.
Ventura M, Simas L, Pepe VLE, Schramm FR. Judicialização da saúde, acesso à justiça e a efetividade do direito à saúde. Physis Revista de Saúde Coletiva. 2010;20(1):77–100.
Vieira FS, Santos MAB. O setor farmacêutico no Brasil sob as lentes da conta- satélite de saúde. Instituto de Pesquisa Econômica Aplicada. Brasília: Ipea; 2020. https://doi.org/10.38116/td2615.
Catanheide ID, Lisboa ES, Souza LEPF. Characteristics of the judicialization of access to medicines in Brazil: a systematic review. Physis. 2016;26(4):1335–56. https://doi.org/10.1590/S0103-73312016000400014.
da Silva JP, Crepaldi MA, da Silva Bousfield AB. Representações Sociais e Doenças Crônicas no Contexto Familiar: Revisão Integrativa. PSSA. 2021;13(2):125–40. Available from: https://www.pssa.ucdb.br/pssa/article/view/964. [Citado 21 de setembro de 2022].
Silva CV, Gaspodini IB. A influência da participação familiar no tratamento do paciente oncológico. Revista Ciência Humanização Passo Fundo. 2020;1(1):74–88.
Chieffi AL, Barata RB. Judicialização da política pública de assistência farmacêutica e equidade. Cad Saúde Pública. 2019;25(8):1839–49. https://doi.org/10.1590/S0102-311X2009000800020.
Carvalho MN, Leite SN. Itinerário dos usuários de medicamentos via judicial no estado do Amazonas Brasil. Interface Comunicação Saúde Educação. 2014;18(51):737–48. https://doi.org/10.1590/1807-57622013.0930.
Brasil. Câmara dos Deputados. Projeto de lei n.11, de 2016. Available from: www25.senado.leg.br/web/atividade/materias/-/materia/125798.
Bastos SP, Ferreira AP. The judicialization of health: the role of the judiciary branch in signalling the need for development and implementation of public health policies. Saúde Debate. 2019;43(esp 4):48–60. https://doi.org/10.1590/0103-11042019S405.
Ciconelli RM, et al. Tradução para a língua portuguesa e validação do questionário genérico de avaliação de qualidade de vida SF-36 (Brasil SF-36). Rev Bras Reumatol. 1999;39(3):143–50.
Ware JE. SF-36 health survey update. Spine. 2000;25(24):3130–9.
Taft C, Karlsson J, Sullivan M. Performance of the swedish SF-36 version 2.0. Qual Life Res. 2004;13(1):251–6.
Mchorney CA, Ware JE, Lu JFR, Sherbourne CD. The MOS 36-item Short Form Health Survey (SF-36): III. Tests of data quality scaling assumptions and reliability across diverse patient groups. Med Care. 1994;32(1):40–66.
Jenkinson C, Layte R, Coulter A, Wright L. Evidence for the sensitivity of the SF-36 health status measure to inequalities in health: results from the Oxford healthy lifestyles survey. J Epidemiol Community Health. 1996;50:377–80.
Mcdowell I, Newell C. Measuring health: a guide to rating scales and questionnaires. 2nd ed. New York: Oxford University Press; 1996.
Wilson D, Parsons J, Tuckerr G. The SF-36 summary scales: problems and solutions. Soz-Praventivmed. 2000;45:239–46.
Efron B. Bootstrap methods: another look at the jacknife. Ann Stat. 1979;7(1):1–26. https://doi.org/10.1007/978-1-4612-4380-9_41.
Sousa ED, Alvarenga KB, Menezes JE, Menezes MAF, et al. Contribution and evaluation of a support tool for linear optimization teaching. Brazilian Journal of Computers in Education. Rev Brasil Inform Educ. 2018;26(3):20–41.
Conselho Nacional de Saúde (BR). Resolução nº 466/12. 2012. https://bvsms.saude.gov.br/bvs/saudelegis/cns/2013/res0466_12_12_2012.html. Accessed 30 Apr 2021.
Conselho Nacional de Saúde (BR). Resolução nº 510/2016. 2016. Available from: https://www.in.gov.br/materia//asset_publisher/Kujrw0TZC2Mb/content/id/22917581. Accessed 30 Apr 2021.
Ristevska-Dimitrovska G, Filov I, Rajchanovska D, Stefanovski P, et al. Resilience and quality of life in breast cancer patients. Open Access Maced J Med Sci. 2015;3(4):727–31.
Solano JPC, Silva AG, Soares IA, Ashmawi HA, Vieira JE. Resilience and hope during advanced disease: a pilot study with metastatic colorectal cancer patients. BMC Palliat Care. 2016;2(15):70. https://doi.org/10.1186/s12904-016-0139-y5.
Ullrich A, Ascherfeld L, Marx G, Bokemeyer C, Bergelt C, et al. Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients. BMC Palliat Care. 2017;16(1):1–10.
Liu C, Wang M. Prevalence and factors associated with depression in patients with COVID-19. Journal of Afective Disorders Reports. 2020;2:100042–6.
Salvetti MG, et al. Prevalence of symptoms and quality of life of cancer patients. Rev Bras Enferm. 2020;73(2):e20180287. https://doi.org/10.1590/0034-7167-2018-0287. [Acessed 4 Junho 2022].
Cordeiro LM, Santos DG, Orlandi FS. Qualidade de vida, ansiedade e depressão em pacientes oncológicos em quimioterapia e familiares. Enferm Foco. 2021;12(3):489–95.
Nunes CFO, Ramos Junior AN. Judicialização do direito à saúde na região Nordeste, Brasil: dimensões e desafios. Cad Saúde Colet. 2016;24(2):192–9.
Nishira RM, et al. Demanda judicial de medicamentos na Justiça Federal do Estado do Paraná. Einstein. 2017;15(1):85–91.
Boing A, Bloemer NS, Roesler NS, Fernandes AS. Judicialização do acesso aos medicamentos em Santa Catarina: um desafio para a gestão do sistema de saúde. R Dir sanit. 2013;14(1):82–97.
Cabral I, de Rezende LF. Analysis of individual lawsuits on supplying medication in São João da Boa Vista, São Paulo Brazil. J Health Law. 2015;16(1):59–77. https://doi.org/10.11606/issn.2316-9044.v16i1p59-77. Available from: https://www.revistas.usp.br/rdisan/article/view/100017. [Cited 27 Apr 2022] .
Instituto Brasileiro de Geografia e Estatística. IBGE 2020. Programa Nacional de Avaliação de Domicílios Continua. PNAD Continua. Available online: http://ftp.ibge.gov.br/Trabalho_e_Rendimento/Pesquisa_Nacional_por_Amostra_de_Domicilios_PNAD_COVID19/Microdados/PNAD_COVID19_052020.zip. (Accessed on 20 July 2021).
Levorato CD, et al. Fatores associados à procura por serviços de saúde numa perspectiva relacional de gênero. Ciênc Saúde Coletiva. 2014;19(4):1263–74. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1413-81232014000401263&lng=en&nrm=iso. Accessed 19/set/2018.
Diniz MAA, Melo BRS, Neri KH, Casemiro FG, Figueiredo LC, et al. Comparative study between formal and informal caregivers of older adults. Ciênc Saúde Coletiva. 2018;23(11):3789–98. https://doi.org/10.1590/1413-812320182311.16932016. ISSN 1678-4561. [Accessed 27 Jan 2022].
Santos ZC. Health judicial demands of people with oncohematological disease: a case study on the social effectiveness of judicialization at a University Hospital [dissertation] UNESP. 2021. p. 139. Available from: http://hdl.handle.net/11449/204445.
Oliveira YMC, Braga BSF, Farias AD, Vasconcelos CM, Ferreira MAF. Judicialization of access to medicines: analysis of lawsuits in the state of Rio Grande of Norte, Brazil. Cad Saúde Pública. 2021;37(1). https://doi.org/10.1590/0102-311X00174619. https://doi.org/10.1590/0102-311X00174619.
Barreto TS, Amorim RC. A família frente ao adoecer e ao tratamento de um familiar com câncer. Rev Enferm UERJ. 2010;18(3):462–7.
Figueiredo T, Silva AP, Silva RMR, Silva JJ, Oliveira e Silva CS, et al. Como posso ajudar? Sentimentos e experiências do familiar cuidador de pacientes oncológicos. ABCS Health Sci. 2017;42(1):34–9.
Zhao Y, Cooklin AR, Richardson A, Strazdins L, Butterworth P, Leach LS. Parent’s shift work in connection with work-family conflict and mental health: examining the pathways for mothers and fathers. J Fam Issues. 2020;1:29. https://doi.org/10.1177/0192513X20929059.
Instituto Brasileiro de Geografia e Estatística. IBGE. Pesquisa traz dados referentes à divisão de tarefas domésticas. 2019. https://www.cnm.org.br/comunicacao/noticias/pesquisa-traz-dados-referentes-a-divisao-de-tarefas-domesticas. [Accessed 12 June 2021).
Camarano AA. Quanto custa cuidar da população idosa dependente e quem paga por isto? In: Camarano AA, editor. (Org.) Novo Regime Demográfico: uma nova relação entre população e desenvolvimento? Rio de Janeiro: IPEA; 2014.
De Valle-Alonso MJ, Hernández-López IE, Zúñiga-Vargas ML, Martínez-Aguilera P. Sobrecarga y Burnout en cuidadores informales del adulto mayor. Enferm Univ. 2015;12(1):19–27. Available at: https://www.scielo.org.mx/pdf/eu/v12n1/v12n1a4.pdf.
Bianchin MA, Silva RD, Fuzetto LA, Salvagno V. Sobrecarga e depressão em cuidadores de pacientes oncológicos em tratamento quimioterápico. Arq Ciênc Saúde. 2015;22(3):96–100.
Nery C. Com o envelhecimento, cresce o número de familiares que cuidam dos idosos no país. Agência IBGE notícias. 2020. Disponível em: https://censo.ibge.gov.br/agencia-noticias/2012-agencia-de-noticias/noticias/27878-com-envelhecimento-cresce-numero-de-familiares-que-cuidam-de-idosos-no-pais.
Ferreira LM, Lemos NFD. A dualidade na experiência do cuidado: homens cuidadores de idosos familiares e suas narrativas. Rev Kairós Gerontol. 2022;25(1):151–67. Brasil: FACHS/NEPE/PUC-SP.
Ministry of Labor (BR). Brazilian Classification of Occupations. CBO. Available at: http://www.mtecbo.gov.br/cbosite/pages/pesquisas/BuscaPorTitulo.jsf;jsessionid=IDCcm64Rmjz1rZkLHXJx1qqD.slave27:mte-cbo. [Accessed Out 21, 2018].
Costa SS. Pandemia e desemprego no Brasil. Rev Adm Pública. 2020;54(4):969–78. https://doi.org/10.1590/0034-761220200170.
International Labour Organization. ILO Monitor: Covid-19 and the world of work. Second Edition. Updated estimates and analysis. Genebra, Switzerland. https://www.ilo.org/wcmsp5/groups/public/@dgreports/@dcomm/documents/briefingnote/wcms_740877.pdf. [Accessed 07 Apr 2020].
Banco Central do Brasil. Cotação de moedas. 2021. https://www.bcb.gov.br. [Accessed Jun 2021].
Romero DE, DAmacena GN, Souza NA, Almeida WS, et al. Older adults in the context of the COVID-19 pandemic in Brazil: effects on health, income and work. Cad Saúde Pública. 2021;37(3):e00216620.
Power K. The COVID-19 pandemic has increased the care burden of women and families. Sustain Sci Pract Policy. 2020;16(1):67–73. https://doi.org/10.1080/15487733.2020.1776561.
Rocha KSC, Santos LSC, Devezas AMLO. Evaluation of quality of life in cancer patients after hospitalization in ICU. Arq Med Hosp Fac Cienc Med Santa Casa São Paulo. 2019;64(2):125–130;64(2):125–30. https://doi.org/10.26432/1809-3019.2019.64.2.125.
World Health Organization (WHO). WHO’s pain relief ladder. Geneva: WHO; 2016. Available from: http://www.who.int/cancer/palliative/painladder/en. [Cited 20 Sept 2017] .
Huang C, Wang Y, Li X, Ren L, Zhao J, Hu Y, et al. Clinical features of patients infected with 2019 novel coronavirus in Wuhan. China Lancet. 2020;395:497–506.
Wu B. Social isolation and loneliness among older adults in the context of COVID- 19: a global challenge. Glob Health Res Policy. 2020;5:27.
Pantell M, Rehkopf D, Jutte D, Syme SL, Balmes J, Adler N. Social isolation: a predictor of mortality comparable to traditional clinical risk factors. Am J Public Health. 2013;103:2056–62.
Valtorta NK, Kanaan M, Gilbody S, Hanratty B. Loneliness, social isolation and risk of car - diovascular disease in the English Longitudi - nal Study of Ageing. Eur J Prev Cardiol. 2018;25:1387–96.
Gandini JAD, Barione SF, Souza AE. Judicialização do direito à saúde: prós e contras. In: Bliacheriene AC, Santos JS, editors. Direito à vida e à saúde: impactos orçamentário e judicial. São Paulo: Atlas; 2010. p. 255–76.
Carli LL. Women, Gender equality and COVID-19. Gender in Management. 2020;35(7/8):647–55. https://doi.org/10.1108/GM-07-2020-0236.
Leite MAC, Nogueira DA, Terra FS. Avaliação da autoestima em pacientes oncológicos submetidos a tratamento quimioterápico. Rev Latinoam Enferm. 2015;23(6):1082–9.
Antunes ES, Silveira MN, Simões GMS. Avaliação da funcionalidade e qualidade de vida de pacientes oncológicos submetidos ao tratamento quimioterápico. Cad Edu Saúde e Fisioterapia. 2018;5(10 ):14 supl.
Ware JE, Kosinski M, Keller SK. SF-36 physical and mental health summary scales: a user’s manual. Boston: The Health Institute, New England Medical Center; 1994.
Borges JA, Quintão MMP, Chermont SSMC, Mendonça Filho HTF, et al. Fatigue: A complex Sympton and its impact on cancer and heart faillure. Int J Cardiovasc Sci. 2018;31(4):433–42.
Jesus AS, Guedes TS, Guedes TSG, et al. Impact of the COVID-19 pandemic on the service of radiotherapy in a public hospital in Salvador/BA. Rev Ciênc Méd Biol Salvador. 2021;20(3):369–74. https://doi.org/10.9771/cmbio.v20i3.47075.
Zwarts MJ, Bleijenberg G, Van Engelen BG. Clinical neurophysiology of fatigue. Clin Neurophysiol. 2008;119(1):2–10.
Riera R, Bagattini AM, Pacheco RL, Pachito DV, Roitberg F, Ilbawi A. Delays and disruptions in cancer health care due to COVID-19 pandemic: systematic review. JCO Glob Oncol. 2021;7:311–23. https://doi.org/10.1200/GO.20.00639.
Braga MNF. Qualidade de Vida e Saúde Mental em Portadores de Esclerose Múltipla. [Dissertação]. Mestrado em Psicologia Clínica e da Saúde. Portugal: Universidade da Beira Interior.; 2011.
Kopec JA, et al. Relationship between arm morbidity and patient-reported outcomes following surgery in women with node-negative breast cancer: NSABP protocol B-32. J Support Oncol. 2013;11(1):22–30. https://doi.org/10.1016/j.suponc.2012.05.003.
Sousa E, Carvalho FN, Bergmann A, et al. Funcionalidade de membro superior em mulheres submetidas ao tratamento do câncer de mama. Rev Bras Cancerol. 2013;59(3):409–17. https://doi.org/10.32635/2176-9745.RBC.2013v59n3.506.
Lyra VB, Fretta TB, Stein F, Sperandio FF, Guimarães ACA. Câncer de Mama e Atividade Física: Percepções durante a Pandemia de Covid-19. Rev Bras Cancerol. 2021;67(2):e-111291. https://doi.org/10.32635/2176-9745.RBC.2021v67n2.1291. Available from: https://rbc.inca.gov.br/index.php/revista/article/view/1291. Accessed 20 June 2022 .
Sohi G, Lao N, Caraceni A, Moulin D, Zimmermann C, et al. Nonopioid drug combinations for cancer pain: a systematic review. PAIN Reports. 2022;7(2):e999.
Brant JM, Eaton LH, Irwin MM. Cancer-related pain: assessment and management with putting evidence into practice interventions. Clin J Oncol Nurs. 2017;21(Suppl 3):4–7. https://doi.org/10.1188/17.CJON.S3.4-7.
Simão DAS, Aguiar ANA, Souza RS, Captein KM, Manzo BF, Teixeira AL, et al. Qualidade de vida, sintomas depressivos e de ansiedade no início do tratamento quimioterápico no câncer: desafios para o cuidado. Enferm Foco. 2017;8(2):82–6. https://doi.org/10.21675/2357-707X.2017.v8.n2.874.
Cardoso G, Graca J, Klut C, Trancas B, Papoila A. Depression and anxiety symptoms following cancer diagnosis: a cross-sectional study. Psychol Health Med. 2016;21(5):562–70. https://doi.org/10.1080/13548506.2015.1125006.
Barrett M, Chu A, Chen J, Lam KY, Portenoy R, Dhingra L, et al. Quality of life in community-dwelling chinese american patients with cancer pain. J Immigr Minor Health. 2017;19(6):1442–8. https://doi.org/10.1007/s10903-016-0392-4.
Mehta A, Chan LS. Understanding of the concept of “total pain” a prerequisite for pain control. J Hosp Palliat Nurs. 2008;10(1):26–33.
Jafari N, Farajzadegan Z, Zamani A, Bahrami F, Emami H, Loghmani A. Spiritual therapy to improve the spiritual well-being of Iranian women with breast cancer: a randomized controlled trial. Evid Based Complement Alternat Med. 2013;2013:353262. https://doi.org/10.1155/2013/353262.
Costa WA. A influência da dor e da espiritualidade na qualidade de vida das mulheres com câncer de mama. Tese (doutorado em ciências da saúde). Rio Grande do Norte: Universidade Federal; 2017. p. 104.
Puchalski CM. Spirituality in the cancer trajectory. Ann Oncol. 2012;23(Suppl 3):49–55. https://doi.org/10.1093/annonc/mds088. PMID: 22628416.
Veit CT, Ware JE. The structure of psychological distress and well being in general populations. J Cons Psych. 1983;51:730–42.
Mata DA, Ramos MA, Bansal N, Khan R, Guille C, et al. Prevalence of depression and depressive symptoms among resident physicians: a systematic review and meta-analysis. JAMA. 2015;314(22):2373–83.
González-Sanguino C, Ausín B, Castellanos MÁ, Saiz J, López-Gómez A, Ugidos C, Muñoz M. Mental health consequences during the initial stage of the 2020 Coronavirus pandemic (COVID-19) in Spain. Brain Behav Immun. 2020;87:172–6. https://doi.org/10.1016/j.bbi.2020.05.040. Epub 2020 May 13. PMID: 32405150; PMCID: PMC7219372.
Liu TW, Wen FH, Wang CH, Hong RL, Chow JM, Chen JS, et al. Terminally ill taiwanese cancer patients’ and family caregivers’ agreement on patterns of life-sustaining treatment preferences is poor to fair and declines over a decade: results from two independent cross-sectional studies. J Pain Symptom Manage. 2017;54(1):35–45.
Dhada S, Stewart D, Cheema E, Hadi MA, Paudyal V. Cancer services during the COVID-19 pandemic: systematic review of patient’s and caregiver’s experiences. Cancer Manag Res. 2021;13:5875–87. https://doi.org/10.2147/CMAR.S318115.
Pinheiro NP, Coimbra FJF, Costa-Jr WL, Ribeiro HSC, Ribeiro R, Wainstein AJA, et al. Surgical cancer care in the COVID-19 era: front line views and consensus. Rev Col Bras Cir. 2020;47:e20202601. https://doi.org/10.1590/0100-6991e-20202601.
Jardim BC, Migowski A, Corrêa FM, Azevedo e Silva G. Covid-19 in Brazil in 2020: impact on deaths from cancer and cardiovascular diseases. Rev Saude Publica. 2022;56:22. https://doi.org/10.11606/s1518-8787.2022056004040.
Migowski A, Corrêa FM. Recomendações para detecção precoce de câncer durante a pandemia de covid-19 em 2021. Rev APS. 2020;23(1):235–40.
Villain P, Carvalho AL, Lucas E, Mosquera I, Zhang L, Muwonge R, et al. Cross- sectional survey of the impact of the COVID-19 pandemic on cancer screening programs in selected low- and middle-income countries: study from the IARC COVID-19 impact study group. Int J Cancer. 2021;149(1):97–107. https://doi.org/10.1002/ijc.33500.
Patt D, Gordan L, Diaz M, Okon T, Grady L, Harmison M, et al. Impact of COVID-19 on cancer care: how the pandemic is delaying cancer diagnosis and treatment for American seniors. JCO Clin Cancer Inform. 2020;4:1059–71. https://doi.org/10.1200/cci.20.00134.
The authors thank the Secretary of Health of the State of Goias and the professionals who came together to make this study possible.
Institutional review board statement
This study was conducted according to the directives of the Declaration of Helsinki and approved by the National Health Council following Resolutions 466/2012 and 510/2016 [24, 25]. It was submitted to the Research Ethics Committee of the Federal University of Goias and approved on February 25, 2021, decision no. 4.558.046-CAAE 93238318.7.0000.5083.
Informed consent was obtained from all subjects involved in the study.
This research received no external funding.
The authors declare no competing interests.
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Salha, L.A., de Menezes, J.E., Dias, D.R. et al. Judicialization and cancer: quality of life of patients and caregivers in the COVID-19 pandemic. Health Qual Life Outcomes 21, 87 (2023). https://doi.org/10.1186/s12955-023-02173-3