Measurement of Health-Related Quality of Life in Survivors of Cancer in Childhood in Central America: Feasibility, Reliability, and Validity

Abstract

Cancer is the commonest cause of disease-related death in children over 5 years of age in various parts of Latin America, but the survival rates are improving. This study assessed the health status and health-related quality of life (HRQL) of more than 200 survivors of cancer in childhood in the countries of a Central American consortium devoted to pediatric hematology-oncology. Patients' self-reports and parental proxy assessments were collected using interviewer-administered Spanish-language questionnaires, and physicians provided assessments using self-complete questionnaires, based on the complementary Health Utilities Index (HUI) Mark 2 (HUI2) and Mark 3 (HUI3) health status classification systems. Inter-rater agreement, measured by intra-class correlation (ICC), was fair to moderate (0.34<ICC<0.55) between patients, parents, and physicians for HRQL scores. There was substantial or almost perfect agreement (ICC>0.60) for all 3 pairs of assessors for readily assessable attributes: HUI2 sensation, HUI3 vision, HUI3 hearing, and HUI3 ambulation. Less than 40% of the patients reported being in perfect health. More than 20% reported being in health states with HRQL scores corresponding to moderate or severe disability, notably in the attributes of emotion and cognition. The results reflect a common profile in survivors of cancer in childhood, including those from industrialized societies. This study illustrates the feasibility of collecting reliable and valid information on HRQL in the developing country context, raising the prospect that such information could be used to influence clinical practice.

Patient-Reported Measures of Hearing Loss and Tinnitus in Pediatric Cancer and Hematopoietic Stem Cell Transplantation: A Systematic Review

“…There were 953 studies identified by the search strategy, of which 73 were retrieved for full evaluation. Six met eligibility criteria and were included in the systematic review (Barr et al, 2000;Einar-Jon et al, 2011;Einarsson et al, 2011;Fu et al, 2006;Kennedy et al, 2014;Soussi & Otto, 1994). Agreement of study inclusion between the two reviewers was κ = 1.00.…”

“…None of the studies were at low risk of bias for study participation or measurement of outcomes. Three of the studies used the Health Utilities Index (Barr et al, 2000;Fu et al, 2006;Kennedy et al, 2014), two used the Hearing Measurement Scale (Einar-Jon et al, 2011;Einarsson et al, 2011), and one used the Tinnitus Questionnaire for Auditory Brainstem Implant (Soussi & Otto, 1994). Language of administration included English, Spanish, Swedish, and Icelandic.…”

Some considerations about the use and applicability of preference-based health-related quality of life measures to survivors of cancer in childhood and adolescence in developing countries

“…Altogether the HUI2 and HUI3 are considered independent but complementary systems, which together describe almost 1 million unique health states to measure the HRQoL (EISER; MORSE, 2001b). Studies claim the appropriateness of the HUI2 and HUI3, as useful preference-based measures of health status and HRQoL in children surviving cancer (BARR et al, 1999), as well as in adolescents who survived childhood cancer (GRANT et al, 2006), and for young adults, under the age of 30 (CARDARELLI et al, 2006), given that the survivors can have a wide age range, like for example, from 3.4 to 25.8 years in the study for survivors in Central America (FU et al, 2006). The HUI is not recommended for children under the age of five, and many studies do not strictly follow that recommendation (FU et al, 2006).…”

“…It is worthwhile pointing out that the HUI2 has been widely used since its beginning in studies about survivors of childhood cancer (FEENEY;FURLONG, 1996). Considering the historical use of the HUI2 and HUI3 for the cancer survivors, researchers (FU et al, 2006) argue the use is justifiable and claim the necessity of assessing the HRQoL of survivors of childhood cancer in a preference-based manner, as survivorship has increased in developing countries, following what has been observed in developed countries. Nevertheless, even with the evidence of extensive historical use of the HUI2 and HUI3 for childhood cancer survivors, it is still important to assess whether their use is actually adequate, raising the question of whether the HUI2 and HUI3 are actually children-friendly instruments.…”

“…These five generic preference-based healthrelated quality of life (HRQoL) measures are quite different from each other, as they are created using distinct methodologies and are comprised of different health domains or attributes, thus leading to particular strengths and weaknesses, so results may differ depending on which one is chosen. They have also been used cross-culturally (FU et al, 2006;SHIMODA et al, 2005;BARR et al, 2001). This paper aims to provide an overview of generic preferencebased instruments used to study quality of life among childhood and adolescence cancer survivors and to discuss the issues with translated versions, cultural diversity, validation and adaptation as well as the aspects related to using proxy respondents.…”