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Cancer survivorship needs in Brazil: Patient and family perspective.

ABSTRACT: INTRODUCTION:Cancer Survivorship is a growing public health challenge. Effective responses from health care and social services depend on appropriate identification of survivors and their families´ specific needs. There are few studies on survivorship in low and middle-income countries, therefore, more evidence-based studies are necessary to develop a comprehensive approach to cancer survivorship. OBJECTIVES:Identify the needs of cancer survivors and their relatives, specifically those of individuals with breast, cervical or prostate cancer, and with acute lymphocytic leukemia (ALL). METHODS:A qualitative, exploratory study conducted in two referral institutions in Brazil, located in Rio de Janeiro (Southeast region) and Fortaleza (Northeast region). The study included 47 patients of public and private health services and 12 family members. We used script-based semi-structured interviews. The discursive material obtained was categorized and analyzed using the Thematic Analysis approach. RESULTS:The analysis identified three central themes: 1) consequences of cancer treatment; 2) Changes in daily life associated with cancer survivorship; and 3) Unmet structural needs in cancer survivorship. CONCLUSION:Social and cancer control policies in Brazil should provide resources, specific care standards and clinical, psychological and social support. Cancer survivors should also receive rehabilitation and work reintegration guidelines. This matter requires broader access to qualified cancer information, development of an integrated patient-centered care and care model, and more research resources for the country's post-treatment cancer period.

SUBMITTER: Santos ATCD

PROVIDER: S-EPMC7544129 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Cancer survivorship needs in Brazil: Patient and family perspective.

Santos Antonio Tadeu Cheriff Dos ATCD Silva Rildo Pereira da RPD Almeida Liz Maria de LM Bosi Maria Lúcia Magalhães MLM Menezes Maria de Fátima Batalha de MFB Skaba Marcia Marília Vargas Fróes MMVF Nigenda Gustavo G Arruda Carlos André Moura CAM Pinheiro Cleoneide Paulo Oliveira CPO González-Robledo María Cecilia MC Knaul Felícia Marie FM

PloS one 20201008 10

<h4>Introduction</h4>Cancer Survivorship is a growing public health challenge. Effective responses from health care and social services depend on appropriate identification of survivors and their families´ specific needs. There are few studies on survivorship in low and middle-income countries, therefore, more evidence-based studies are necessary to develop a comprehensive approach to cancer survivorship.<h4>Objectives</h4>Identify the needs of cancer survivors and their relatives, specifically ...[more]

PMID: 33031426

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Project description:BackgroundCancer treatments have many adverse effects on patient's health leading to poor cardiorespiratory capacity, muscular- degeneration, fatigue, loss of strength and physical function, altered body-composition, compromised immune-function, peripheral neuropathy, and reduced quality of life (QOL). Exercise programs can significantly increase functional capacity when tailored to individual needs, thus improving health. Exercise interventions in cancer rehabilitation, when supported by appropriate nutrition can be effective in attaining a healthy weight and body-composition. The successful rehabilitation program should also include psycho-social education aimed to reduce anxiety and improve motivation.MethodsThe current study aimed to collect information on the post-treatment needs of cancer patients including barriers and expectations facing them, their caregivers and their families through consultation in focus group interviews. Cancer survivors living in the Republic of Ireland were recruited from the University Hospital Galway, community-based cancer centres, cancer support groups and social media platforms to participate in the study and attend a focus group interview. The focus group discussions were designed to obtain information on the collective views of cancer survivors on relevant topics selected. The topics were developed in consultation with a patient and public involvement (PPI) group supporting the study. The topics list was circulated to all participants prior to the focus group. The interviews were audio recorded and transcribed verbatim. Focus group transcripts were analysed subjected to a thematic framework analysis using NVivo.ResultsThirty-six participants took part in 9 focus groups. Our analysis uncovered two main themes. The first theme 'cast adrift with no direction' was grouped into three sub-themes: everything revolves around treatment; panic and fear; and what exercise should I be doing? The second theme 'everybody is different' was clustered into two sub-themes: side effects get in the way; and personalised exercise program.ConclusionThe study highlighted the lack of information and support needed by patients living with and beyond cancer. The study also highlighted the need for a personalised exercise programme designed to target the individual patient symptoms that would be ideal for the mitigation of long term symptoms and in improving QOL.

Project description:BackgroundWhile overactive bladder is often managed in the primary care setting, a number of barriers including embarrassment, poor communication, and low patient adherence contribute to the under-treatment of patients with burdensome urinary symptoms. In order to address these challenges, it is crucial to have a fundamental understanding of patient perspectives toward OAB and urinary symptoms. To meet this aim, researchers designed and conducted a study to identify patients' knowledge, experiences and attitudes, barriers to treatment adherence, and desires and tendencies regarding patient/clinician communications.MethodsA mixed-methods qualitative/quantitative needs assessment of patients with overactive bladder and/or urinary symptoms. Researchers conducted in-depth qualitative interviews via telephone with 40 patients. Interview results informed the design and dissemination of a quantitative survey, which was completed by 200 self-selected respondents who had previously identified themselves as having overactive bladder or bladder problems. Statistical and qualitative analysis of results were conducted.ResultsAmong survey respondents, an average of 3.5 years elapsed between symptom onset and seeking diagnosis by a physician. In the long term most patients do not experience improvement in symptoms. Medication non-adherence is common and is related to therapy effectiveness and adverse effects. Patients clearly indicate that communication and patient/physician relationships are important to them and they would prefer the clinician initiate the conversation on overactive bladder. Patient experiences, perspectives, and attitudes toward their bladder symptoms differ in many ways from clinicians' assumptions.ConclusionsThe significant time gap between symptom onset and diagnosis indicates ongoing need for screening and diagnosis of overactive bladder. Contrary to guideline recommendations, urinalysis and physical examination are not widely used in clinical practice. Many patients experience no improvement in symptoms over time. Patients indicate that clinician/patient relationships and communication regarding their condition are important.

Project description:ObjectivesWith novel antiandrogen treatments of varying clinical benefits and risks becoming available, this study investigates how patients with castration-resistant prostate cancer (CRPC) value differences in treatment characteristics.DesignCross-sectional observational study.SettingA discrete choice experiment was conducted. Patients chose between two hypothetical non-metastatic CRPC (nmCRPC) treatments defined by six attributes: risk of fatigue, falls or fracture, cognitive impairment, hypertension, rashes as side effects to treatment and extension of time until cancer-related pain occurs.ParticipantsA total of 137 adult male patients with CRPC with no prior experience with chemotherapy and with Eastern Cooperative Oncology Group status 0-1 were recruited. Patients were excluded if they participated in an investigational programme outside of routine clinical practice, had a clinically relevant medical or psychiatric condition, or diagnosis of visceral/other metastases not related to the prostate, or were otherwise deemed ineligible by the referring physician.Primary outcome measuresRelative preference weights and relative importance of the attributes was estimated by hierarchical Bayesian logistic regression.ResultsAmong the treatment attributes, 'risk of cognitive impairment as a side effect of treatment' was the most important attribute (relative importance (RI) (95% CI): 27.47% (24.80% to 30.14%)), followed by 'extension of time until cancer-related pain occurs' (RI (95% CI): 17.87% (15.49% to 20.25%)) and the 'risk of falls or fracture' (RI (95% CI): 15.99% (14.73% to 17.25%)). The 'risk of hypertension as a side effect of treatment' (RI (95% CI): 13.77% (12.73% to 14.81%)) had similar RI as 'risk of rashes as a side effect of treatment' (RI (95% CI): 13.17% (12.15% to 14.19%)), followed by the 'risk of fatigue as a side effect of treatment' (RI (95% CI): 11.74% (10.75% to 12.73%)).ConclusionsPatients consider the risk of cognitive impairment as a side effect of treatment as the most important attribute in nmCRPC, followed by the extension of time until cancer-related pain occurs, and the risk of falls and fracture. These features should be considered in treatment decision making for nmCRPC in Japan.

Dataset Information

Cancer survivorship needs in Brazil: Patient and family perspective.

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Cancer survivorship needs in Brazil: Patient and family perspective.

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