Brazil encompasses two epidemiologically distinct populations. The health care system
follows this same paradigm, with public and private institutions coexisting side by
side to serve two different populations. The Unified Health System was created in
1990 on the basis of the premise that health care is a fundamental right and that
all Brazilian citizens and foreign visitors should have access to health care services.
The private system preceded the Unified Health System and, despite now marketing itself
as a complementary service to the public system, provides a host of overlapping services
targeting those with greater socioeconomic resources.
Almost one third of the population (those who have higher levels of education and
who live in more developed areas) possesses health insurance.
Studies have found a high prevalence of distress (36.4% to 65%) among Brazilian patients
regardless of care setting, a figure similar to that found in other developing countries
and among patients with advanced cancer.
However, in the public setting, the number of supportive care professionals is far
outweighed by the number of patients requiring care, an issue that has led some institutions
to implement systematic biopsychosocial screening to streamline services and provide
care for those most in need.
In addition to limited resources, cultural barriers to the development and implementation
of effective and accessible psychosocial supportive care programs should be recognized.
One such challenge may be the fact that many Brazilian patients perceive illness as
possessing a spiritual component, both in its development and in its treatment. These
beliefs can be a result of cultural traditions, as well as an erroneous understanding
of disease processes and the potential for modern medical treatment.
Furthermore, some individuals may become resigned to their diagnosis and engage in
more passive or avoidant behavior, regardless of their prognosis. Past research highlights
the prominent role of fear associated with cancer and the stigma associated with the
misconception that cancer is untreatable.
As elsewhere, adherence to cancer prevention guidelines, such as those that pertain
to exercise and diet, as well as screening and follow-up, are far from optimal.
This study sought to provide preliminary insight into the psychosocial care needs
of patients in these two-tiered health care settings. A multicenter retrospective
survey was conducted to determine whether (1) prevalence rates of psychosocial distress
and symptom burden were similar and (2) whether patients reported different psychosocial
or symptom-based needs on the basis of the institution in which they received care.
It is hoped that this information will help elucidate gaps in psychosocial cancer
care and inform supportive care practices.
A total of 972 patients with cancer who were undergoing chemotherapy treatment were
recruited at two oncology centers in Brazil: 580 patients from Centro de Câncer de
Brasília, a private cancer center (PRI), which offers psychosocial, nutritional, and
dentistry services, and 392 patients from Universidade Federal de São Paulo, a public
university hospital (PUB), in which patients have access to psychological, psychiatric,
social work, nutritional, and physiotherapy services.
The ethics committee of each site provided study approval. The study was conducted
in compliance with the regulations of the ethical standards of the Helsinki Declaration
and of Brazilian National Health Council Resolution No. 466/2012. Informed consent
forms were signed by all participants. Eligibility criteria included being at least
18 years old, having been diagnosed with cancer, receiving chemotherapy treatment,
being able to give written informed consent, and having an adequate level of functioning
(Eastern Cooperative Oncology Group score ≥ 2).
Patients were recruited by a psychologist during their chemotherapy infusion and completed
measures of distress, anxiety/depression, and quality of life (QoL). Data on sociodemographic
variables, including patients’ age, sex, marital status, education, cancer diagnosis,
and disease stage, were collected from patient records.
A self-report Brazilian Portuguese
version of the National Comprehensive Cancer Network distress thermometer was used
to assess distress level during the previous week on a visual analog scale, ranging
from 0 (no distress) to 10 (extreme distress). This measure also identifies possible
problems, grouped into practical, family, emotional, spiritual and physical problems,
on a 35-item problem list.
A cutoff score of 4 was used to indicate clinically significant distress.
A Brazilian Portuguese version of the Hospital Anxiety and Depression Scale (HADS),
a 14-item self-related scale, was used to assess symptoms of anxiety and depression.
This scale is composed of two subscales, the HADS-A and the HADS-D, whose scores range
from 0 to 21, with higher scores indicating greater levels of anxiety and depression.
Scores ≥ 8 on the HADS-A and ≥ 9 on the HADS-D suggest clinical levels of anxiety
and depression, respectively.
Quality of life.
The Brazilian Portuguese version of the Functional Assessment of Chronic Illness Therapy-General,
a 27-item self-related scale, was used to measure QoL across four domains of well-being
(physical, social/family, emotional, and functional) on a 4-point Likert scale.
The total Functional Assessment of Chronic Illness Therapy-General score is the sum
of the scores for the four subscales. Scores range from 0 to 28 for the physical,
social/family, and functional subscales, 0 to 24 for the emotional subscale, and 0
to 108 for the total score.
Descriptive analyses were conducted to characterize patients from each institution.
χ2 and t test analyses were used to determine potentially significant differences
between groups across outcome measures. Statistical Package for the Social Sciences
(SPSS) for Windows version 22 (SPSS, Chicago, IL) was used for all analyses.
The majority (64.4% female; mean age, 55 years; 59.9% married) were diagnosed with
GI (26.1%) and breast (25.6%) cancers, at an advanced disease stage (III to IV; 70.3%;
Table 1). There were significant differences in demographic and illness-related variables
between patients from both institutions. PRI patients tended to have more years of
education (61.9% had a college degree) and were less likely to be diagnosed with advanced
disease (57.5% v 71.7%).
Descriptions of Sample and Study Variables (N = 972)
The prevalence of moderate to severe distress (distress thermometer ≥ 4) was significantly
higher among PUB patients (Table 1). On the problem list (Appendix Table A1, online
only), PUB patients tended to report significantly more practical problems (eg, financial,
housing, and transportation). In contrast, PRI patients tended to report significantly
more problems associated with family, emotional, and physical domains. For family
problems, PRI patients more frequently reported dealing with children. In the emotional
domain, depression, sadness, and loss of interest were more frequently reported by
PRI patients, whereas fear, nervousness, and worry were more frequently reported by
PUB patients. In the physical domain, the five most prevalent problems reported by
PUB patients were fatigue, pain, dry/itchy skin, sleep, and nausea, whereas for PRI
patients, the five most prevalent problems were appearance, sleep, fatigue, dry/itchy
skin, and nausea. The prevalence of anxiety/depression was significantly lower for
the PRI group, who also presented with a higher mean score on QoL compared with PUB
patients (Table 1). This trend was reflected in higher scores on subscales; the US
norm of physical well-being is at 50th (PRI) and 25th (PUB) percentile, social/family
at 75th (PRI) and 50th (PUB) percentile, emotional at 50th (PRI) and 25th (PRI) percentile
and functional at 75th (PRI) and 50th (PUB) percentile.
This article explores the differences between two existing health care realities in
Brazil and how these differences may affect the well-being of patients with cancer.
There exists a paucity of psychosocial cancer research in developing countries and
thus, the current study provides unique and important insight into the psychosocial
needs of these different groups of patients. Our findings extend the current knowledge
by documenting elevated levels of distress among patients with cancer in South America.
As hypothesized, individuals from poorer socioeconomic backgrounds (PUB patients)
reported poorer QoL, more severe disease at diagnosis, and greater distress compared
with those accessing care in PRI. Importantly, differences emerged in the types of
psychosocial and physical problems reported by the patients, which may have implications
for the structure of supportive care in these settings. However, the increased frequency
of problem reporting was not reflected in subsequent impairments in QoL domains or
higher rates of anxiety/depression. Furthermore, the comparison between the QoL scores
and US norms highlights the need for developing interventions that target physical
and emotional well-being at both institutions.
Because supportive care is provided free of charge to PUB patients, providers and
resources are often overburdened. In line with international guidelines, biopsychosocial
screening, shown previously to be feasible in Brazil,
could assist in targeting limited resources to those in greatest need. Like many countries,
Brazil is experiencing rising health care costs and increased demand for services.
This has increased the need for local research endeavors that focus on the effective
translation and implementation of international guidelines in care settings, with
emphasis on cultural sensitivity, quality control, and cost effectiveness.
Of further interest is the relatively low frequency of spiritual problems reported
by both groups. Given that the majority of Brazilians report a belief in God or a
one might expect that patients confronted by suffering and the possibility of death
would seek comfort and support in their spiritual beliefs.
As noted earlier, it may be that patients in both groups possessed a supportive spiritual
community and thus did not report spiritual distress, or alternatively, they did not
perceive the cancer care setting and associated professionals as appropriate sources
of spiritual support. Whereas the discrepancies in QoL, distress, and disease stage
are consistent with broader research examining socioeconomic status and health, no
such data have been published in Brazil. In recognition of the paucity of research
and clinical findings for psychosocial cancer care, this is an important step in describing
patient needs and psychosocial outcomes. It is hoped that these data will increase
public awareness of the importance of psychosocial care and the usefulness of validated
tools to streamline services. Furthermore, it is hoped that these findings will provide
an impetus for implementing quality care standards for comprehensive cancer care in
Brazil and will help reduce discrepancies in the quality of psychosocial services
and thus, patient outcomes.
The current findings must be considered in light of study limitations. Although this
study did not set out to provide a comprehensive comparison of care and patient outcomes
in the private and public cancer care settings, it does provide preliminary evidence
of differences and may help guide future research efforts. It was not possible to
collect detailed data regarding patients’ needs before their cancer diagnosis, whether
these needs changed over time, or the impact of supportive care services accessed.
This provides fertile ground for future research in the domain of psychosocial cancer
care in developing countries such as Brazil.
In conclusion, this preliminary study suggests that patients diagnosed with cancer
who access care in a public university hospital report impaired QoL, greater distress,
and different supportive care needs than do those those in the private setting. It
also highlights the potential influence of socioeconomic inequality on patient outcomes
in the developing world and the challenges that exist in the promotion of well-being
and health. In addition, this study further emphasizes the importance of providing
comprehensive supportive care to all those affected by cancer, irrespective of socioeconomic
status or care setting.