Introduction

Cancer survivorship is a complex phenomenon which requires specific and tailored approaches to planning, implementation and evaluation of care [1–3]. Cancer patients and family members experience a long-term major disruptive experience in clinical, emotional, and social terms; all of this requires unique norms for care giving, attention and protection of individual rights. A comprehensive identification of this population’s health needs is an essential initial step for planning whichever health actions are necessary to address the challenges as well as to increase the opportunities of cancer survivorship.

Although the concept of "cancer survival" is widely used today, the term is relatively recent and is attributed to Fitzhugh Mullan in 1985 [4]. Reflecting on his own cancer experience, he postulated the following relatively predictable survival stages:

(1) An acute phase from diagnosis until the end of the treatment. (2) Prolonged survival, beginning at the end of the first cancer treatment. It includes follow-up tests and consolidation or maintenance therapy. (3) Permanent survival, occurring years after cancer treatment, when recurrence may be less likely. [4] The value of these definitions and their extension to family members was great because it recognizes the enormous impact of a cancer diagnosis on patients and their families. This shock persists over time, regardless of medical treatment.

However, the definition of survival has remained a fuzzy concept today, with multiple meanings and debates about its use [5, 6]. Although the survival phase is recognized worldwide as part of the cancer continuum, it does not have standardized care protocols yet [7]. Over the past decade, efforts have been made to better define and develop categories for survival: Aziz emphasized the importance of incorporating late and long-term effects in the definition [8]. Miller et al sought to update Mullan phases in relation to treatments [9]. And Surbone who proposed four categories: acute, chronic, long-term, and cured [10]. The lack of a consensus on the survival concept and its phases has had consequences for patients, physicians, health systems and also for research, making it difficult to provide adequate clinical care and to develop public policies and research support [11].

In many high-income countries, the increase in cancer survival associated with advances in diagnosis, multi-modal treatment, and population aging has resulted in a growing number of patients living with chronic and late effects of the disease and/or its treatment, as well as with many associated social and economic consequences [12]. This has generated important reactions from research and service areas. It also draws attention and resources from the government, from non-governmental institutions, and from academics [13]. On the other hand, in many LMIC, access to health care–mainly for cancer diagnosis and treatment–has been the main focus of cancer control actions. These countries have been slow to recognize the specific needs of cancer survival, especially for those individuals in the post-treatment period. As a result, patients continue to experience significant barriers to accessing health facilities and to return to their daily life and work activities [14, 15]. Brazil fits this pattern. The Brazilian National Cancer Control and Prevention Policy considers five levels of intervention for cancer treatment: Prevention, Diagnosis, Treatment, Monitoring and Palliation [16]. However, there are no specific interventions to meet the needs of cancer survival.

We intentionally chose to study four types of cancer, seeking to focus on those most prevalent in the adult population, including users of both sexes. All of this, made the observation more comprehensive. As for ALL, its insertion brought the young population, composing the amplitude desired by the study. These types of cancer, therefore, allow us to assess the care needs offered to adults and children in Brazil today.

For 2020, 450,000 new cases of cancer are estimated in Brazil (excluding non-melanoma skin cancer). Breast cancer ranks first, with 66,280 new cases, followed by, prostate cancer with 65,840 new cases. Cervical cancer ranks sixth overall and third among women, with 16,590 new cases. Leukemias rank tenth, with 10,810 new cases [17]. The CONCORD III study estimated the five-year survival rate in Brazil, for the period of 2010–2014, at 92% for prostate cancer, 75% for breast cancer, 60% for cervical cancer, and 66% for Infant ALL [18]. The estimated number of prevalent cases (5-year), in 2018, in Brazil, for both sexes and all ages, were: 262,226 for breast cancer, 184,139 for prostate cancer, 46,858 for cervical cancer and 29,530 for ALL [19].

This scenario is similarly found in populations of other Latin American countries, especially considering the incidence, mortality and survival rates [18]. These numbers have direct implications for the people who have been diagnosed, for the societies and for health systems.

Brazil's Unified Health System (SUS) is one of the largest tax-financed public health systems in the world and offers free universal access to health services. SUS traditionally focuses on primary care, implemented through the Family Health Strategy (FHS). Through the FHS, SUS provides integrated primary care to two-thirds of the approximately 206 million Brazilians [66]. A quarter of Brazilians have private health insurance [20], resulting in health expenditures of US$ 105 billion in 2014. These expenses, by comparison, exceeded total government spending on health at $ 90 billion [20]. The Brazilian health system, which is likely the best in Latin America, is theoretically capable of offering the necessary services in the survival phase [16, 20]. However, in practice, there are challenges to offering this type of care [20]. The main challenge is that survival is still not recognized as an important issue in Brazil. The system was designed to refer patients seen in the primary care units to more complex secondary and tertiary services. But this is not happening, which is partly due to the economic slowdown as well as to lack of training and experience of primary care teams in managing patients with a cancer history [20].

There are few studies on cancer survival conducted in LMICs, including Brazil, using a qualitative approach. In 2018 the IARC [19], estimated a 5-year prevalence of 1,307,120 cases in Brazil. The overall objective of this study was to identify cancer survival needs, drawn from the perspective of cancer patients and their families. Specifically breast, cervical, prostate cancer and acute llymphocitic leukemia (ALL).

Method

The study applied a qualitative approach, within the interpretive tradition, considering the subjective experiences of individuals who had a cancer diagnosis and their families [21–24]. This approach was adopted to explore and understand the meaning that was given to the survivorship phenomenon [25].

The study was conducted in Rio de Janeiro (from May to August, 2014) and Fortaleza (from January to March, 2015), located in the Southeast and Northeast regions of the country, respectively. These regions differ in geographic, socioeconomic and cultural aspects as well as in the level of healthcare network organization. The cities are two large Brazilian capitals that nationally rank second and fifth in terms of number of inhabitants, with population estimates in 2017 of 6.5 and 2.6 million inhabitants, respectively.

The fieldwork was done in public and private health institutions that offer oncological care: “José Alencar Gomes da Silva National Cancer Institute (INCA)” (public) and “Integrated Oncology Clinics (COI)” (private), in Rio de Janeiro, Walter Cantídio University Hospital (HUWC) (public) and “Ceara Cancer Institute (ICC)” (private), in Fortaleza.

Participant selection was done through purposive sampling. The interviewers reviewed medical charts and chose those participants who, after a previous telephone contact, agreed to participate. Interviews were conducted when patients returned to health facilities for follow-up appointments, (they had been diagnosed at least one year before). Interviews, both of family and patients, were conducted individually in private rooms in the hospital, with an average duration of 40 minutes. We reached forty-eight survivors who had been diagnosed at least one year before the time of the interviews; twelve for each cancer, (six in the public health system and six in the private health system). We also contacted 12 family members (three for each type of cancer in the public and private sectors but not necessarily family or blood-relatives. Those who chose to participate in the study signed an Informed Consent Form.

The inclusion criteria considered: (a) patients diagnosed with breast, cervical, prostate cancer and acute lymphocytic leukemia, aged 18 years or older, who had been diagnosed at least one year before the time of the interviews. (b) Spouses or significant caregivers of cancer survivors, aged 18 years or older. The criteria of ¨at least one year since diagnosis¨ considered those who had accumulated sufficient experience with the disease, to be able to discourse on the subjects of interest. All individuals in end-of-life care and those with cognitive difficulties to participate in the interview were excluded.

The discursive material was obtained through semi-structured individual interviews, using a semi-structured script that was specifically designed for the study. It was inspired in Mullan,’s stages of survivorship [4], containing diagnosis and treatment; significant moments in diagnosis and treatment; changes in daily life; type of information and guidance received during treatment and after treatment; type of emotional and social support received, and suggestions for the health system, based on the participant's experience.

The structuring of the interview guide was done after a pre-test with cancer survivors and their families. Open-ended questions were designed to access illness narratives according to existing literature [26–28]. The interview guide underwent forward and back-translation and was adapted to the Brazilian reality (ATCDS, RPS, MFBM, MMVFS, GN). Interviews were conducted by five health and social science experts who had wide experience in qualitative research fieldwork in both social and oncological fields (MFBM, MMVFS, MLMB, CAMA, CLPOP). Procedures allowed researchers to obtain primary data from personal testimonies, and to stimulate free verbalization about the inherent needs of cancer survivorship. Given the recent criticism of the theoretical saturation principle and because we defined the number of interviews prior to the study, the sample closure was based on the principle of "information power" [29], which is more congruent with the tradition to which our research is affiliated.

The initial categorization of the discursive material was performed in each city by the same researchers who conducted the interviews. The interviews were transcribed literally. The authors, working independently, validated each transcript as a rigor criterion. The categorization was built, based on recurrences of the statements enunciated in the transcriptions and convergences and divergences of their meanings. We based our analysis on the thematic discourse approach, which is aligned with a critical interpretative approach, in order to articulate the socio-cultural and clinical contexts and enable the interpretation of qualitative data [30–35].

The categorized and interpreted material was subsequently re-analyzed by all authors in a workshop in Rio de Janeiro in 2018, in order to integrate and re-evaluate the material gathered in different cities, as well as to validate the interpretation together. The themes were equally defined and refined for the final version of the results and discussion in the article.

The speech fragments of individuals diagnosed with cancer and their family members were coded as follows:

1. Group of respondents: P (patient) and F (family)
2. Types of cancer: C (cervical), M (breast cancer), L (leukemia), and P (prostate cancer)
3. Type of health unit: A (public); B (private)
4. Interview number: 1–24
5. Research site: R (Rio de Janeiro city) and F (Fortaleza city).

This study was approved by the Research Ethics Committees of the National Cancer Institute (dossiers: 523.004; 555.869; 560.305; 801.666) and by the other participating institutions (Research Ethics Committee of Hospital Pró-Cardíaco by the “Integrated Oncology Clinics (COI)”, and Research Ethics Committees of Walter Cantídio University Hospital (HUWC) and the “Ceará Cancer Institute (ICC)” [36].

Results

The study population consisted of 59 individuals: 47 of whom were diagnosed with cancer (prostate (12), breast (12), cervical (12), and ALL (11)), and 12 family members (three for each type of cancer), who were in, or accompanying treatment in the health institutions that offer oncological care in Rio de Janeiro and Fortaleza.

Among those who were diagnosed with cancer, 64% were female and married, and about half of them were 60 years old or older. 43% had a higher education level and over 85% had income from paid activity. Approximately 36% were treated in the public health network, 45% were treated in the private network, while 19% used both networks. Approximately 36% and 45% were treated only in public health and private networks, respectively, and 19% in both networks.

The median time between diagnosis and interview for individuals diagnosed with cancer was 3.1 years, with a minimum of 1 year and a maximum of 18 years. In Rio de Janeiro and Fortaleza, the median time was 3.1 years (1.5–18 years) and 2.5 years (1–14.6 years), respectively. For 37% of individuals with cancer in Rio de Janeiro and 21% in Fortaleza, the interval between diagnosis and interview was >5 years. In Rio de Janeiro there were 2 individuals with breast cancer (66 and 70 years old); 3 with prostate cancer (56, 73, and 74 years old); 2 with cervical cancer (66 and 70 years old) and 2 with ALL (both female, 21 and 23 years old). In Fortaleza, there were 3 with breast cancer (61, 64, and 64 years old); 1 with cervical cancer (74 years old) and 1 with ALL (female, 35 years old). The remaining patients had been diagnosed between 1 and 5 years before the interview and had already completed primary treatment.

Family members interviewed in Rio de Janeiro were between 31 and 71 years old and those from Fortaleza were between 30 and 85 years old. Interviewees who were not related to patients from our study, had relatives with the following types of cancer: Rio de Janeiro (02 with cervical cancer—38 and 70 years old; 02 with breast cancer—31 and 52 years old, 01 with ALL—35 years old, and 01 with prostate cancer—71 years old). Fortaleza (02 with cervical cancer—45 and 85 years old; 02 with prostate cancer—56 and 79 years old; and, 02 with ALL—30 and 33 years old). More than half of the family members were spouses (58%); 67% were female, 58% were over 40 years old, and half of them had completed elementary school. More than 65% of the respondents had a paid activity. The median time between the relative's diagnosis and the family's interview was 3 years, with a minimum of 1 year and a maximum of 14 years. In the city of Rio de Janeiro, the median time was 08 years (02–14 years) and, in the city of Fortaleza, it was 2.5 years (1–6 years). Their relatives had already completed primary treatment.

Discussion

The discussion of the study is developed around three central themes defined for the interpretation of the results: 1) Consequences of cancer treatment; 2) Changes in daily life associated with cancer survivorship; and 3) Unmet structural needs in cancer survivorship. In all these topics, the interviewees indicate that the cancer experience is a long journey, not only in search of a cure and / or treatment, but also in a search for mitigation and support for the clinical, emotional and social impacts resulting from the consequences of cancer treatment [4, 37, 38]. Cancer treatments, as reported in the literature, may cause physical, emotional and / or socioeconomic changes either immediately or later in life [39–44]. These aspects were highlighted in the reports of the study participants. Although they have different socioeconomic and cultural characteristics, residing in different cities and attending by non-congeneric public and private health care, reported similar reactions regarding, they reported similar complaints and problems. It is relevant to highlight that the group interviewed, although it had participants with more than five years of post-treatment, was composed mostly of individuals who were still under the impact of the consequences of primary cancer treatment and in transition to the follow-up period.

Conclusion

Considering the themes and meanings highlighted in this study, it is urgent to plan and implement lines of comprehensive care in the cancer post-treatment in Brazil. This model must be suitable to address the mid and long term, physical, social, and economic consequences of cancer and its treatment.

Comprehensive care should emphasize affective and symbolic aspects of survivorship as essential for the organization of humanized care models, focused on the specific needs of individuals affected by the disease and their relatives. Issues related to cancer survivorship must be included in current cancer policies as well as national agendas for health and social well-being.

Supporting information

Acknowledgments

The authors would like to thank the support of Joecy Dias Andrade; Marina Leorne; the teams of healthcare professionals at the Integrated Oncology Clinic, National José Alencar Gomes da Silva Cancer Institute, Walter Cantídio University Hospital, Ceara Cancer Institute; Alessandra Durstine; Hector Arreola Ornelas; and the Mexican Health Foundation. We would like to thank Dr. Moysés Szklo who kindly reviewed this article.