INTRODUCTION Quality of life measurement is an important aspect of comprehensive clinical assessment. It does not have a set definition, but changes according to sociocultural context. Head and neck cancer patients experience substantially decreased health-related quality of life. The Cuban public health system needs to develop its own instrument to measure these patients’ quality of life.

OBJECTIVES. Construct and validate an instrument to measure quality of life in Cuban patients with nasopharyngeal, laryngeal, oral or mesopharyngeal cancer.

METHOD The sample comprised adult patients treated for nasopharyngeal, laryngeal, oral or mesopharyngeal cancer in Cuba’s National Oncology and Radiobiology Institute in 2013 and 2014. To construct and validate the instrument, we selected a sample of 520 patients. Initial interviews were held until no substantially new information emerged; 40 patients were selected to participate in focus groups to identify important problems leading to decreased health-related quality of life. Face validity of the preliminary questionnaire was assessed with 40 patients. Internal consistency and validity were assessed with 400 patients. Score stability was assessed with another 40 patients using a test–retest design. There were 24 experts who participated in the process, 15 in the construction phase and 9 in the content validity evaluation of the preliminary version. Assessment of reliability and validity was based on internationally recognized approaches, including Cronbach alpha and empirical verification of convergent, discriminant, clinical and predictive validity. Response burden was also assessed (completion time and item nonresponse).

RESULTS A 65-item questionnaire, CV-IOR-CyC-01, was developed and validated, with three domains (physical functioning, psychosocial functioning and family relationships, disease symptoms and treatment side effects) and two ungrouped questions on perceived general health and perceived health-related quality of life. The instrument displayed satisfactory reliability (homogeneity and stability) and validity (face, content, convergent, discriminant, clinical and predictive). Test–retest correlation was strong. Large differences and a downward trend in health-related quality of life across clinical stages and moderate or high standardized response mean values reflect good clinical and predictive validity. Response burden was acceptable (completion time 6.2 minutes, item nonresponse rate 1.3%–3.8%).

CONCLUSIONS CV-IOR-CyC-01’s psychometric properties justify its use in clinical trial protocols with patients with nasopharyngeal, laryngeal, oral or mesopharyngeal cancer.

KEYWORDS Validation studies, psychometrics, health-related quality of life, head and neck cancer, head and neck neoplasms, qualitative research, Cuba

INTRODUCTION Although modern technology has extended the survival of breast cancer patients, treatment’s adverse effects impact their health-related quality of life. Currently, no instrument exists capable of identifying the range of problems affecting breast cancer patients receiving radiotherapy in Cuba’s socioeconomic and cultural context.

OBJECTIVES Construct and validate an instrument to measure the effects of breast cancer and radiotherapy on health-related quality of life in Cuban patients.

METHODS The study was conducted at the Oncology and Radiobiology Institute, Havana, Cuba, from January 2010 through December 2011. Inclusion criteria were: adult female, histological diagnosis of breast cancer, treated with ambulatory radiotherapy, and written informed consent; patients unable to communicate orally or in writing, or who had neurologic or psychiatric conditions were excluded. Development phase: focus groups guided by a list of questions were carried out with 50 women. The patients reported 61 problems affecting their health-related quality-of-life. A nominal group (six oncologists and two nurses) identified the same problems. A syntactic analysis of the information was performed to create items for study and measurement scales. Content validity was determined by a nominal group of seven experts using professional judgment. Another 20 patients were selected to evaluate face validity. Validation phase: the instrument was applied to 230 patients at three different points: before radiotherapy, at the end of radiotherapy and four weeks after radiotherapy was concluded. Reliability, construct validity, discriminant validity, predictive validity, interpretability and response burden were evaluated.

RESULTS The final instrument developed had 33 items distributed in 4 domains: physical functioning, psychological functioning, social and family relationships, and physical and emotional adverse effects of disease and treatment. There were two discrete items: perceived general health and perceived health-related quality of life. Content validity and face validity were assessed as acceptable, by experts and patients respectively. Homogeneity, construct validity, and discriminant validity were satisfactory. The best results were obtained with test–retest reliability, predictive validity, and interpretability; the low rate of unanswered questions indicated that the instrument did not produce excessive patient response burden.

CONCLUSION The new instrument fulfilled the requirements for measuring impact of breast cancer and of radiotherapy on health-related quality of life in these Cuban patients, validating its usefulness for inclusion in clinical trial protocols.

KEYWORDS Psychometrics, quality of life, breast cancer, radiotherapy, Cuba

INTRODUCTION: Estimating childhood cancer incidence globally is hampered by lack of reliable data and uniform age limits for classifying and analyzing data reported. In Cuba, cancer data has been systematically gathered and processed by the National Cancer Registry (NCR) since 1964. The International Classification of Childhood Cancer (ICCC) is currently recommended for registering neoplasms in the population aged ≤19 years. Cancer incidence data published by the Cuban Ministry of Public Health, however, uses ICCC diagnostic groups for the population aged <15 years, and topographic sites for the population aged ≥15 years.

OBJECTIVE: The objectives of this study are to describe cancer incidence in the Cuban population aged ≤19 years in 2001–2003 using the ICCC, as well as geographic distribution of incidence by sex and by principal diagnostic groups.

METHODS: A descriptive study of cancer incidence in the population aged ≤19 years was conducted using NCR data for 2001–2003. ICCC diagnostic groups and subgroups were used, and 5 age groups (<1, 1–4, 5–9, 10–14 and 15–19 years) were analyzed. Total incidence and percentages for each diagnostic group were calculated. Number of cases in each diagnostic group and subgroup was also recorded by age group, and age-specific rates per 100,000 population aged ≤19 years (ASR) and age-adjusted rates to the standard world population aged ≤19 years (AAR) were calculated. AARs for leukemias, lymphomas and central nervous system (CNS) tumors were used to analyze childhood cancer risk by sex and geographical distribution in the country’s 14 provinces and Isle of Youth Special Municipality.

RESULTS: In 2001–2003, the NCR reported 1285 new cancer cases in the population aged ≤19 years for an overall incidence of 13.9 per 100,000 population aged ≤19 years (AAR). Highest risk was found in children aged <1 year with an ASR of 21.9 per 100,000 population aged ≤19 years. Leukemias, lymphomas and central nervous system tumors comprised 61.1% of new cases, and geographic distribution of these diagnostic groups varied by sex. Childhood cancer risk was highest for males in Ciego de Avila, Villa Clara and the Isle of Youth Special Municipality and highest for females in Sancti Spíritus, Villa Clara and Cienfuegos.

CONCLUSIONS: Incidence of childhood cancer in Cuba conforms to rates reported internationally and to the incidence pattern most common in Latin America. Further research is recommended to examine risk factors influencing geographical variations in incidence within Cuba.

Keywords Pediatrics, cancer, incidence, risk, registries, epidemiology

Introduction Cancer has been the second cause of death in Cuba since 1958. The National Cancer Registry (NCR) and the National Statistics Division of the Ministry of Public Health provide incidence, mortality and other relevant epidemiological data on the disease, as a basis for analysis and decision-making in public health planning for cancer control.

Objectives Describe trends in incidence and mortality of cancer in Cuba overall and by sex since 1990, and analyze the most current 3-year data for frequent types and risk of developing and dying from cancer, by age group, sex, site, and province.

Methods Cancer incidence and mortality were described using age-adjusted rates based on standard world population for 1990–2003 and 1990–2007, respectively. Crude and age-adjusted rates were calculated for the most common sites (excluding nonmelanoma skin cancer) by sex using the latest 3-year incidence data available (2001–2003) from the National Cancer Registry and mortality data (2005–2007) from the National Statistics Division of the Ministry of Public Health. To compare risk of developing and dying from cancer among Cuban provinces, age-adjusted rates were distributed in quartiles.

Results Cancer incidence and mortality have increased in both sexes since 1990. In 2001–2003, an average of 23,710 new cancer cases were diagnosed annually (excluding nonmelanoma skin cancer), and the average annual risk of developing cancer was 216.5 per 100,000 population for men and 204.0 per 100,000 population for women. Between 2005 and 2007, there were 19,671 average annual deaths from cancer in Cuba. The risk of developing and dying from cancer varies by age group and by geographic location but was highest in Havana City province. The sites with highest incidence and mortality were lung, female breast, prostate, colon, and uterine cervix.

Conclusions Cancer incidence and mortality are increasing in Cuba, and the differences by site, age, sex and geographical distribution analyzed in this article, as well as recommended further research, should serve to inform adoption and implementation of more effective strategies for the Ministry of Public Health’s national Comprehensive Cancer Control Program.

Keywords: Cancer, epidemiology, incidence, mortality, death rate, age distribution, sex distribution, registries, Cuba