RESUMO
OBJECTIVES: To evaluate the effectiveness of newborn screening for sickle cell disease in eastern Jamaica by determining what proportion of screen-positive infants were registered with the Sickle Cell Unit by 2 months (60 days) of age and identifying parents' perceptions of facilitators and barriers impacting age at registration. STUDY DESIGN: This cross-sectional study used a mixed method approach. Ages at diagnosis confirmation and first clinic visit were recorded for screen-positive infants born between February 1, 2015, and November 15, 2017. All parents were invited to complete the survey, and early and late attendees were invited to participate in the qualitative aspect of the study. A researcher-designed questionnaire and an interview guide based on the Capability, Opportunity, Motivation, Behavior, and health belief models examined factors that may affect time to registration. Quantitative data were analyzed to yield descriptive statistics using Stata®v14. All interview data were coded. Similar codes were grouped together into themes. RESULTS: Most (97.7%) of the 133 screen-positive infants had their diagnosis confirmed. Only 40% had their first clinic visit by age 60 days. Denial of the diagnosis, poor communication, and the costs of treatment and transportation were perceived barriers to registration, whereas family support was a facilitator. CONCLUSIONS: Diagnosis confirmation was almost universal, but most infants did not attend clinic by 2 months of age. In-depth interviews have identified several facilitators and barriers that can be targeted to improve early registration.
Assuntos
Anemia Falciforme , Recém-Nascido , Humanos , Lactente , Jamaica , Estudos Transversais , Anemia Falciforme/diagnóstico , Triagem Neonatal , PaisRESUMO
The current study examines gender effects on disease knowledge and quality of life in adolescents with sickle cell disease (SCD) in Jamaica. We report the baseline results on 76 girls and 74 boys with mean age (16.9 ± 1.8 vs. 16.2 ±2.0 years), recruited in a larger intervention study. Girls had higher knowledge scores (15.3 ± 4.2 vs. 13.3 ± 4.2 p=.004), poorer overall QOL scores (70.1 ± 19.6 vs. 77.2 ± 17.8 p=0.02) but similar severity scores to boys. Girls also had significantly lower scores on many QOL domain scores: Pain occurrences over the course the past month (Pain and Hurt:77.49 ± 23.3 vs. 85.37 ± 17.13); concerns about seeking health services for pain (Worry1:63.73 ± 26.21 vs. 75.33 ± 24.62); confidence in self-management & treatment effects (Treatment: 72.25 ± 23.6 vs. 80.73 ± 18.90) and SCD disclosure & empathy from others (Communication II: 47.44 ± 1.02 vs. 61.71 ± 29.41). Knowledge was positively predicted by age, higher education, greater household possessions and was higher in girls; whereas QOL was lower in girls and those with greater disease severity and higher with higher education. In conclusion, there is a significant gender differential in disease knowledge and QOL among adolescents with SCD. Interventions will need to address the lower QOL in girls and lower disease knowledge among boys.
Assuntos
Anemia Falciforme/psicologia , Qualidade de Vida , Adolescente , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Jamaica , Masculino , Análise de Regressão , Autogestão , Fatores Sexuais , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Increasing knowledge and understanding of disease is known to improve outcomes in persons living with a chronic illness. In this paper, we aim to compare the disease knowledge of children with sickle cell disease (SCD), age 6-10 years, who received an intervention (an educational colouring book on SCD) geared towards improving disease knowledge, to those who did not received the colouring book. METHODS: A quasi-experimental study was conducted where disease knowledge was determined in 56 children who had received the colouring book and compared to 60 children who did not receive this intervention. RESULTS: The mean knowledge score was significantly higher in the intervention group (mean difference = 2.65; 95% CI [1.43, 3.86]), as well as in older children and in those in higher grades but there was no difference between sexes. In a multiple regression model (adjusted R2 : 0.39; p value < .001), knowledge score was significantly higher in those who received the intervention (ß: 2.62; 95% CI [1.48, 3.76]) while adjusting for age, gender, persons living at home, and the father's employment status. CONCLUSION: The study highlights that a simple, inexpensive (cost: US$1/book) child-friendly intervention can significantly improve knowledge about SCD even in young children. It also underlines various social factors that are associated with children's understanding of their disease.
Assuntos
Anemia Falciforme/psicologia , Serviços de Saúde da Criança , Conhecimentos, Atitudes e Prática em Saúde , Educação de Pacientes como Assunto , Anemia Falciforme/economia , Criança , Serviços de Saúde da Criança/economia , Serviços de Saúde da Criança/organização & administração , Análise Custo-Benefício , Feminino , Inquéritos Epidemiológicos , Humanos , Jamaica , Masculino , Educação de Pacientes como Assunto/economia , Educação de Pacientes como Assunto/métodosRESUMO
OBJECTIVES: To assess the effect of educational interventions on disease knowledge, illness perception (IP) and quality of life (QOL) of adolescents with sickle cell disease (SCD) in Kingston, Jamaica. METHODS: A randomized controlled intervention study was conducted among 150 adolescents (ages 13-19 years) attending for routine visits. Baseline disease knowledge, IP and QOL were assessed prior to randomization to 3 groups (Group A: routine care; B: educational booklet; C: booklet + formal counselling) and all measures were repeated 3 months later. Changes in outcomes were analysed using random effects analysis of variance models. RESULTS: There were 76 girls and 74 boys (Mean age 16.1ñ1.9 years; 77% had homozygous SS disease), of whom 63.3% were reviewed at three months. Baseline knowledge was higher: with age (p value: 0.007) and in girls (p value: 0.024). Teen QOL was lower in girls (p value: 0.038) and lower in severe disease (p value< 0.001). Post-intervention knowledge scores were significantly higher within all 3 groups (increase of 1.68 in group A, 2.03 in B and 2.88 in C), but there was nil effect of interventions. There were no changes in QOL or IPs either. Adolescents who had higher knowledge scores had better understanding that their illness was long lasting (Coef: 0.22; p value: 0.008), and they perceived better personal control (Coef: 0.30; p value<0.001), as well as the effect of treatment (Coef: 0.12; p value: 0.01), in managing their illness. CONCLUSIONS: Participation in the study was associated with improved knowledge scores, but interventions per say appeared to have no effects.
Assuntos
Educação , Conhecimentos, Atitudes e Prática em Saúde , Qualidade de Vida , Doença da Hemoglobina SC , Adolescente , JamaicaRESUMO
Newborn screening (NBS) for sickle cell disease (SCD) has occurred in Jamaica since 1973 in two periods, the most recent being since 1995. As a result of NBS, significant lessons have been learnt about management of the disease. Additionally, significant improvements in morbidity and mortality of children affected with the disease have occurred because of the implementation of simple interventions. Unfortunately, in a country where the burden of disease is high compared to other countries, only approximately 40% of children born in Jamaica currently benefit from NBS. As such, the future of NBS for SCD in Jamaica lies in island-wide screening. There are challenges including the lack of appropriate governance and policy structures, the technology for high-volume processing and comprehensive care clinics throughout the island. On the other hand, the significant strides made in disease management, the strength and model of care of the Sickle Cell Unit, delicately balancing limited resources and increased survival cannot be disparaged. Therefore, consistent with the World Health Organization's recommendation, we are working toward achieving island-wide screening for SCD, to ensure equitable access to continued improvements in morbidity, mortality and quality of life.
RESUMO
OBJECTIVES: The sickle gene frequency in the Jamaican population has not changed over a generation. It is unknown whether routine antenatal screening for sickle cell trait (SCT) has affected women's knowledge of their SCT status. The aim of this study was to compare the prevalence of self-reported SCT in parous women to the prevalence in nulliparous women, men and to the observed prevalence of SCT measured in an antenatal clinic. METHODS: All participants in the nationally representative Jamaica Health and Lifestyle Survey 2008 were asked whether they had the SCT. The impact of gender, age, educational attainment, geographical location, and pregnancy on self-reported SCT were assessed. The prevalence of SCT in women attending a large antenatal clinic concurrently was compared to that reported by women of child-bearing age in the lifestyle survey. RESULTS: Self-report significantly underestimated the prevalence of SCT (2·9% versus 10·1%, P<0·001). Those with secondary education were more likely than those with presecondary education (P = 0·01) and women more likely than men (3·2% versus 1·1%, P = 0·001) to report having SCT. Women who had been pregnant were no more likely than other women to report having SCT (3·1% versus 4·1%, P = 0·4). CONCLUSIONS: Attendance at antenatal clinic where SCT screening is routine, is not associated with increased self-report of SCT. Screening programs must ensure that, as well as technically accurate screening, there is effective communication of the results of screening for SCT to those tested to help reduce the public health burden of sickle cell disease in tropical countries.
Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Diagnóstico Pré-Natal/métodos , Traço Falciforme/diagnóstico , Adolescente , Adulto , Idoso , Escolaridade , Feminino , Inquéritos Epidemiológicos , Humanos , Jamaica/epidemiologia , Estilo de Vida , Masculino , Pessoa de Meia-Idade , Paridade , Gravidez , Complicações Hematológicas na Gravidez/diagnóstico , Complicações Hematológicas na Gravidez/epidemiologia , Prevalência , Autorrelato , Traço Falciforme/epidemiologia , Adulto JovemRESUMO
OBJECTIVE: Penicillin prophylaxis is important in the defence against invasive pneumococcal disease in sickle cell disease (SCD). Penicillin may be administered by the oral route or by the intramuscular (IM) route. Compliance with the oral route, although difficult to assess, has been reported to be highly variable and often poor. We sought to determine the compliance rate with intramuscular penicillin (IM) prophylaxis in children with sickle cell disease. METHODS: Children followed at the Sickle Cell Unit in Jamaica were recruited. Good compliance was deemed if patients received at least 10 injections over the preceding 12-months. Children on IM prophylaxis for less than a 12-month period were deemed to be compliant if they received 80% of injections since commencing prophylaxis. RESULTS: Data were available for 78 (HB SS 73; male 42) patients attending the clinic during the period of observation. Sixty-nine (88.5%) of the children were compliant with IMpenicillin prophylaxis. CONCLUSION: This study reports a high compliance (88.5%) to IM penicillin prophylaxis which was associated with an incidence rate of invasive pneumococcal disease lower than what is seen in other comparable studies, reflecting the route of administration. Intramuscular penicillin prophylaxis, despite challenges, is a practical option. It can contribute to better patient compliance and thus significantly impact global rates of invasive pneumococcal disease and its complications in children with SCD and other similar conditions.
Assuntos
Anemia Falciforme/complicações , Antibacterianos/administração & dosagem , Cooperação do Paciente , Penicilinas/administração & dosagem , Infecções Pneumocócicas/prevenção & controle , Pré-Escolar , Feminino , Humanos , Lactente , Injeções Intramusculares , Jamaica , MasculinoRESUMO
OBJECTIVES: Penicillin prophylaxis is important in the defence against invasive pneumococcal disease in sickle cell disease (SCD). Penicillin may be administered by the oral route or by the intramuscular (IM) route. Compliance with the oral route, although difficult to assess, has been reported to be highly variable and often poor. We sought to determine the compliance rate with intramuscular penicillin (IM) prophylaxis in children with sickle cell disease. METHODS: Children followed at the Sickle Cell Unit in Jamaica were recruited. Good compliance was deemed if patients received at least 10 injections over the preceding 12months. Children on IM prophylaxis for less than a 12month period were deemed to be compliant if they received 80! of injections since commencing prophylaxis. RESULTS: Data were available for 78 (HB SS 73; male 42) patients attending the clinic during the period of observation. Sixtynine (88.5!) of the children were compliant with IM penicillin prophylaxis. CONCLUSIONS: This study reports a high compliance (88.5!) to IM penicillin prophylaxis which was associated with an incidence rate of invasive pneumococcal disease lower than what is seen in other comparable studies, reflecting the route of administration. Intramuscular penicillin prophylaxis, despite challenges, is a practical option. It can contribute to better patient compliance and thus significantly impact global rates of invasive pneumococcal disease and its complications in children with SCD and other similar conditions.
OBJETIVO: La profilaxis con penicilina es importante en la defensa contra la enfermedad neumocócica invasiva de la enfermedad de células falciformes (ECF). La penicilina puede administrarse por vía oral o por vía intramuscular (IM). El cumplimiento terapéutico por vía oral - aunque es difícil de evaluar-se ha reportado como altamente variable y a menudo pobre. Se buscó determinar la tasa de cumplimiento terapéutico con la profilaxis de penicilina intramuscular (IM) en niños con enfermedad de células falciformes. MÉTODOS: Se reclutaron niños bajo seguimiento en la Unidad de Células Falciformes en Jamaica. Se consideraba un buen cumplimiento el que los pacientes recibieran al menos 10 inyecciones en los últimos 12 meses. Se consideraba que los niños bajo profilaxis IM por un período menor de 12 meses habían cumplido las normas terapéuticas, siempre que hubiesen recibido el 80! de las inyecciones desde el comienzo de la profilaxis. RESULTADOS: Hubo datos disponibles para 78 (HB SS 73; 42 hombres) pacientes que asistieron a la clínica durante el período de observación. Sesenta y nueve (88,5!) de los niños cumplieron con las normas de la profilaxis con penicilina IM. CONCLUSIONES: Este estudio reporta un alto cumplimiento (88,5!) con la profilaxis de la penicilina IM, asociado con una tasa de incidencia de la enfermedad neumocócica invasiva, inferior a la que se observa en otros estudios comparables que reflejan la vía de administración. A pesar de los desafíos, la profilaxis con penicilina intramuscular, es una opción práctica. Puede contribuir a un mejor cumplimiento del paciente, y así afectar significativamente las tasas globales de la enfermedad neumocócica invasiva y sus complicaciones en niños con ECF y otras condiciones similares.
Assuntos
Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Anemia Falciforme/complicações , Antibacterianos/administração & dosagem , Cooperação do Paciente , Penicilinas/administração & dosagem , Infecções Pneumocócicas/prevenção & controle , Injeções Intramusculares , JamaicaRESUMO
BACKGROUND: Asthma causes significant morbidity and mortality in the developing world. It is thus important to identify modifiable risk factors. OBJECTIVES: To undertake a cross-sectional study to determine the prevalence of skin test reactivity to aeroallergens in Jamaican children and adults and the relationship of the diagnosis of asthma to the pattern of skin test positivity. METHODS: One hundred and sixty subjects without the sickle cell gene (genotype AA), eighty adults and eighty children, were recruited. Skin testing to seven aeroallergens was undertaken (atopy being diagnosed if there were at least one positive reaction). Asthma status was determined by a questionnaire and/or medical records. RESULTS: Twenty-seven (34%) of the children and forty-one (51%) of the adults were skin test positive to at least one aeroallergen. The most common positive responses in both age groups were to Dermatophagoides farinae, Dermatophagoides pteronyssinus and cockroach mix-(German and American). All adult asthmatics with current symptoms reacted to cockroach allergen. CONCLUSIONS: Appropriate steps to reduce cockroaches and cockroach sensitization might positively impact on asthma morbidity in Jamaica.
Assuntos
Alérgenos , Asma/imunologia , Hipersensibilidade Imediata/imunologia , Testes Cutâneos , Adolescente , Adulto , Animais , Antígenos de Dermatophagoides , Asma/diagnóstico , Asma/fisiopatologia , Criança , Baratas , Estudos Transversais , Dermatophagoides farinae , Dermatophagoides pteronyssinus , Poeira , Feminino , Humanos , Hipersensibilidade Imediata/fisiopatologia , Jamaica , Masculino , Ácaros , Prevalência , Rinite , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The active ingredients of marijuana may have beneficial properties in the treatment of chronic pain and inflammation and is being used by sufferers of chronic pain and arthritis in some settings. Anecdotally, marijuana is believed by some sickle cell disease (SCD) patients to improve their health. This study aimed to determine the prevalence of marijuana smoking in the Jamaica Sickle Cell Cohort Study (JSCCS) in the years 2000 and 2004. The perception that marijuana use ameliorated the complications of SCD was also investigated. METHODS: All patients in the JSCCS were invited to attend an annual review, and during the 2000 and 2004 reviews, participants with homozygous sickle cell (SS) disease and sickle cell haemoglobin-C (SC) disease were asked whether they smoked marijuana, and if they smoked, whether it was used for medicinal purposes related to SCD. The authors compared smoking prevalence by gender, disease, and year of review. The association of smoking with a measure of pain frequency was also examined. RESULTS: The prevalence of marijuana smoking was higher among men and among SC participants. The proportion of either gender reporting smoking of marijuana increased in 2004 compared to 2000, and this use was not related to a simple measure of clinical severity of SCD. CONCLUSIONS: Marijuana smoking is common in adults with SCD but its usage is unrelated to clinical severity of the disease.
ANTECEDENTES: Los ingredientes de la marihuana pueden tener propiedades beneficiosas para el tratamiento del dolor e inflamación crónicos, y en algunos lugares esta planta está siendo usada por enfermos que sufren de dolor y artritis de manera crónica. De forma anecdótica, se dice que algunos pacientes de la enfermedad de células falciformes (ECF) creen que la marihuana les mejora la salud. Este estudio se propuso determinar la prevalencia del hábito de fumar marihuana en el Estudio de Cohorte Jamaicano de Células Falciformes (ECJCF) en los años 2000 y 2004. Los autores también examinaron la creencia de que el uso de la marihuana guarda relación con la percepción de que la misma mejora los casos con complicaciones por ECF. MÉTODOS: A todos los pacientes en el ECJCF, se les invita a asistir a un examen anual, y durante los exámenes de los años 2000 y 2004, a los participantes con enfermedad de célula falciforme homocigótica (SS) y con la enfermad de célula falciforme hemoglobina C (SC), se les preguntó si fumaban marihuana, y si la usaban con fines medicinales en relación con la ECF. Los autores compararon la prevalencia por género, enfermedad, y año de examen. Asimismo, examinaron la asociación del hábito de fumar marihuana con una medida de frecuencia de dolor. RESULTADOS: La prevalencia del hábito de fumar marihuana fue más alta entre los hombres y entre los participantes SC. La proporción de ambos géneros que reportó hábito de fumar, aumentó en el año 2004 en comparación con el año 2000, y el uso de la marihuana no estuvo relacionado con una simple medida debida a la gravedad de la ECF. CONCLUSIONES: El hábito de fumar marihuana es común en adultos con ECF, pero su uso no guarda relación con la gravedad de la enfermedad.