Health-Related Quality of Life in Adolescents With Chronic Illness in Jamaica: Adolescent and Parent Reports.

Purpose: The aim of this study is to assess the level of agreement between adolescents' self-assessment and parent-proxy reports on health-related quality of life (HRQOL) in Jamaican adolescents with chronic illness.

Methods: A cross-sectional study was conducted, recruiting adolescents living with a chronic illness (ALCIs)-asthma, human immunodeficiency virus, insulin-dependent diabetes mellitus, or sickle cell disease and age/sex-matched healthy adolescents. Data were collected on HRQOL from adolescents and parents using the Pediatric Quality of Life Scale.

Integrating a problem-solving intervention with routine care to improve psychosocial functioning among mothers of children with sickle cell disease: A randomized controlled trial.

Objective: To assess the feasibility of a problem-solving skills training intervention in improving psychological outcomes in mothers of infants with sickle cell disease (SCD).

Design And Methods: This parallel randomized controlled trial recruited 64 babies with SCD, 6 to 12 months of age, and their mothers. Baseline measurements assessed mothers' coping and problem-solving skills, depression, and parental stress before random assignment to intervention or control groups (n = 32 each).

How Free Is Free Health Care? An Assessment of Universal Health Coverage Among Jamaicans with Sickle Cell Disease.

In an effort to transition toward universal health coverage (UHC), Jamaica abolished user fees at all public health facilities in 2008. We aimed to determine the extent of out-of-pocket payments (OPPs) and the other cost barriers to UHC among patients with sickle cell disease (SCD). Patients presenting to the Sickle Cell Unit in Kingston, Jamaica, for routine care between October 2019 and August 2020 were consecutively recruited and interviewed about their latest hospitalization within the previous 4 weeks.

Progression of albuminuria in patients with sickle cell anemia: a multicenter, longitudinal study.

Sickle cell nephropathy results in chronic kidney disease (CKD), which is associated with significant morbidity and mortality in sickle cell anemia (SCA). Albuminuria is an early manifestation of sickle nephropathy; however, little is known about progression of albuminuria or its correlation with glomerular filtration rate (GFR) decline or CKD. We studied nephropathy progression in 303 SCA participants in a prospective, multicenter, longitudinal study.

Interventions for treating neuropathic pain in people with sickle cell disease.

Background: Pain is the hallmark of sickle cell disease (SCD) and it can be severe, frequent and unpredictable. Although nociceptive pain is more common, at times, people with SCD may have neuropathic pain. The latter can occur due to peripheral or central nerve injury.

Causes of death and early life determinants of survival in homozygous sickle cell disease: The Jamaican cohort study from birth.

Globally, the majority of persons born with sickle cell disease do not have access to hydroxyurea or more expensive interventions. The objectives were to estimate the survival in homozygous sickle cell disease, unbiased by symptomatic selection and to ascertain the causes of death in a pre-hydroxyurea population. The utility of early life biomarkers and genetically determined phenotypes to predict survival was assessed.

Disease Knowledge, Illness Perceptions, and Quality of Life in Adolescents With Sickle Cell Disease: Is There a Link?

Disease knowledge, illness perceptions, and quality of life (QOL) were examined in 150 adolescents (mean age = 16.1 years, SD = 1.9; 49.

Stigma and illness uncertainty: adding to the burden of sickle cell disease.

Background: Persons with sickle cell disease (SCD) experience multiple medical and physical complications; the disease also has numerous effects on their social and emotional well-being. We hypothesized that adults with SCD in Jamaica experience moderate levels of stigma and illness uncertainty and that these experiences may be associated with socio-demographic factors, such as gender, educational status and economic status.

Methods: We surveyed 101 adults with SCD (54.

Socio-environmental exposures and health outcomes among persons with sickle cell disease.

There is much variability in the expression of sickle cell disease (SCD) and recent works suggest that environmental and social factors may also influence this variability. This paper aims to use geographic information systems technology to examine the association between socio-environmental exposures and health outcomes in all persons who have attended or currently attend the Sickle Cell Unit in Jamaica. Rural patients presented for clinical care at older ages and had less annual visits to clinic.

Interventions for patients and caregivers to improve knowledge of sickle cell disease and recognition of its related complications.

Background: Sickle cell disease is a group of genetic diseases which is especially prevalent in tropical and subtropical regions; however, forced migration and ongoing population movement have spread it throughout the world, with estimated birth rates reaching 0.49 per 1000 in the Americas, 0.07 per 1000 in Europe, 0.

Renal function in adult Jamaicans with homozygous sickle cell disease.

Objectives: As populations with sickle cell disease (SCD) live longer, it is likely that the burden of renal dysfunction will be an increasing challenge for patients. In this study, we aim to determine the prevalence of renal dysfunction and its possible predictors in persons with SCD.

Methods: Ninety-eight patients with the homozygous SCD (SS disease;55 females, 43 males; mean age 34 ± 2.

Risky behaviours of Jamaican adolescents with sickle cell disease.

Objectives: To describe the risky behaviours of Jamaican teens with sickle cell disease (SCD) and compare them to a national sample of Jamaican youth.

Methods: One hundred twenty two SCD adolescents, 15-19 years old, completed the standardized questionnaire used in the Jamaican Youth Risk and Resiliency Behaviour Survey (JYRRBS), which was a nationally representative survey of 1317 Jamaican youths. Information was obtained on socio-demographics, smoking, alcohol use, and sexual activity.

Determining glomerular filtration rate in homozygous sickle cell disease: utility of serum creatinine based estimating equations.

Background: Various estimating equations have been developed to estimate glomerular filtration rate (GFR) for use in clinical practice. However, the unique renal physiological and pathological processes that occur in sickle cell disease (SCD) may invalidate these estimates in this patient population. This study aims to compare GFR estimated using common existing GFR predictive equations to actual measured GFR in persons with homozygous SCD.

Locus of control, depression and quality of life among persons with sickle cell disease in Jamaica.

This study explored how locus of control (LOC), depression and quality of life (QOL) interplay in patients with sickle cell disease. One hundred and forty-three sickle cell clinic patients with consecutive clinic consultations completed the Multidimensional Health Locus of Control and Short Factor 36 (SF-36) scales as well as the Beck Depression Inventory. Participants in this study had higher scores on the "chance", "other people" and "internal" domains of LOC than persons with a number of other chronic illnesses in a previous study.

Splenic enlargement in adults with homozygous sickle cell disease: the Jamaican experience.

Objective: It is quite rare to find splenomegaly or its various complications in adults with homozygous sickle cell (SS) disease. Splenomegaly in adults may indicate a differential severity of disease, when compared with those who have had 'autosplenectomy'.

Methods: We studied the clinical and haematological profiles of all SS patients (n = 25) in our database who have had splenomegaly in their adulthood (group 1) and compared with a random sample of age- and gender-matched persons (n = 75) who did not have splenomegaly in adulthood (group 2).

Excess risk of maternal death from sickle cell disease in Jamaica: 1998-2007.

Background: Decreases in direct maternal deaths in Jamaica have been negated by growing indirect deaths. With sickle cell disease (SCD) a consistent underlying cause, we describe the epidemiology of maternal deaths in this population.

Methods: Demographic, service delivery and cause specific mortality rates were compared among women with (n = 42) and without SCD (n = 376), and between SCD women who died in 1998-2002 and 2003-7.

Higher rates of hemolysis are not associated with albuminuria in Jamaicans with sickle cell disease.

Background: Albuminuria is a marker of glomerular damage in Sickle Cell Disease (SCD). In this study, we sought to determine the possible predictors of albuminuria in the two more prevalent genotypes of SCD among the Jamaica Sickle Cell Cohort Study participants.

Methods: An age-matched cohort of 122 patients with HbSS or HbSC genotypes had measurements of their morning urine albumin concentration, blood pressure, body mass index, haematology and certain biochemistry parameters done.

Knowledge and health beliefs of Jamaican adolescents with sickle cell disease.

Background: The adolescent stage of life is generally perceived to be a challenging period, which may be magnified when a chronic illness such as sickle cell disease (SCD) is present. In this study, we sought to determine the knowledge and health beliefs of Jamaican adolescents with SCD as these factors may impact their self-management skills.

Procedure: An interviewer-administered questionnaire was completed by 117 patients (93 SS:24 SC; 48 males:69 females) between the ages of 15 and 19 years at their routine health maintenance visit to the Sickle Cell Unit, UWI.

Depression and loneliness in Jamaicans with sickle cell disease.

Background: Sickle cell disease (SCD) is the commonest genetic disorder in Jamaica, and has life-long implications for those afflicted with it. It is well known that depression and loneliness may exist in those with chronic diseases, but the coexistence of depression and loneliness in people with sickle cell disease is not clear. The aim of this study is to determine the prevalence of and factors associated with depression and loneliness in the Jamaica Sickle Cell Cohort Study and its age and sex matched controls.

Validation of the SF-36 in Jamaicans with sickle-cell disease.

Quality-of-life (QOL) measurements are becoming a vital part of health outcome appraisal. Sickle-cell disease (SCD) places a substantial burden on those afflicted. No QOL measure has been validated for use in Jamaica.

Utility of WHOQOL-BREF in measuring quality of life in sickle cell disease.

Background: Sickle cell disease is the commonest genetic disorder in Jamaica and most likely exerts numerous effects on quality of life (QOL) of those afflicted with it. The WHOQOL-Bref, which is a commonly utilized generic measure of quality of life, has never previously been utilized in this population. We have sought to study its utility in this disease population.

Quality of life in patients with sickle cell disease in Jamaica: rural-urban differences.

Introduction: Quality of life (QOL) refers to people's ability to function in the ordinary tasks of living. It moves beyond direct manifestations of illness to the patient's personal morbidity. These assessments are an important aspect of chronic disease management.