Level of agreement between adolescents' self-assessment and parent proxy report of health-related quality of life in adolescents with sickle cell disease.

BACKGROUND: We aim to assess the levels of agreement between parents, as proxies, and Jamaican adolescents living with sickle cell disease (SCD) in the reporting of the adolescent's quality of life. PROCEDURES: This cross-sectional study assessed 102 patient/proxy pairs on quality of life of adolescents with SCD using the PedsQL-SCD module. The level of agreement among pairs was assessed starting with broad group-level approaches (the Wilcoxon signed-rank test augmented by exploring percentage agreement) tapering to individual-level approaches (intraclass correlation coefficients [ICCs] supplemented with Bland-Altman plots). RESULTS: Most patients (76.5%) had homozygous SS disease (45.1% females; mean age 15.2 ± 1.5 years). Median total pediatric quality of life (PedsQL) scores were 79.1 (adolescent report) and 80.2 (parental report) (P = .60). There were 11.8% underestimation and 12.7% overestimation of overall health-related quality of life (HRQOL) by parents. The highest perfect agreement existed on the "pain and hurt" domain for both male and female adolescents (85.7% and 84.4%, respectively). Overestimation was highest on the "social communication" domain for both male and female adolescents (19.6% and 34.8%, respectively). Parents exhibited good agreement on total PedsQL scores in male adolescents (ICC = 0.70), but moderate agreement (ICC = 0.43) in female adolescents. Generally, parents underestimated their male child's functioning and overestimated the female child's functioning on the various domains. CONCLUSIONS: Parents and adolescents exhibit fair agreement in assessment of the adolescent's overall HRQOL but differ on subjective domains. Agreement varies by sex of the affected teen where girls' HRQOL is generally overestimated by the parental proxy. Interventions to improve parents' understanding of their children's psychosocial needs are needed.

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; 49.3% males) with sickle cell disease (SCD). Females had higher knowledge (P = .004), lower QOL (P = .02), and perceived their illness to be more unpredictable (P = .03). Those with more severe disease perceived their illness to be unpredictable with worse outcomes. Those with higher knowledge scores perceived their illness to be chronic, made more sense of their illness, and perceived greater personal and treatment control. Final hierarchical regression model showed that secondary education as compared to primary education level (P < .001) was positively correlated whereas disease severity (P < .001), perceived unpredictability (P = .024), and negative emotions (P < .001) were negatively correlated with QOL. Health practitioners should assess adolescents' illness perceptions and encouraging continuing schooling and addressing emotional/psychological problems could improve their QOL.

Attitudes of patients towards being cared for by male nurses in a Jamaican hospital.

AIM: To determine the attitudes of patients towards male nurses in a Jamaican hospital. BACKGROUND: More males in nursing will help to address the nursing shortage and provide diversity in the profession. Patient attitudes towards male nurses will influence recruitment and retention. METHODS: A cross-sectional study was used. Data were collected using a self-administered questionnaire and an attitudinal measuring scale. RESULTS: Seventy-three patients responded (response rate 91%). Male nurses were perceived negatively by 51% of respondents. However, only 10% had a negative perception of the care they received from male nurses. More males (80%) than females (54%) had a negative attitude towards receiving an enema from a male nurse. CONCLUSIONS: Patients generally had a negative attitude towards male nurses but had a positive view if they were cared for by a male nurse. These traits can be used as the basis of changing the gender balance of nurses in Jamaica.

The lived experiences of adolescents with sickle cell disease in Kingston, Jamaica.

AIM: To explore the lived experiences of adolescents with sickle cell disease, in Kingston, Jamaica. METHOD: A descriptive qualitative design was used for this research. In-depth interviews were conducted with six adolescents with sickle cell disease at a Sickle Cell Unit operated by the University of the West Indies. Interviews were audiotaped, transcribed, and thematically analyzed. RESULTS: The majority of the adolescents demonstrated a positive self-concept. They reported strong family, school, and peer support which made them feel accepted. All were actively engaged in social activities such as parties, but had challenges participating in sporting activities. Various coping strategies were utilized to address challenges of the disease including praying, watching television, and surfing the Internet. CONCLUSION: Sickle cell disease can be very challenging for the adolescent, but with positive self-concept and increased social support, especially from family and peers, these adolescents were able to effectively cope with their condition and live productive lives.

Physical restraint usage at a teaching hospital: a pilot study.

This mixed method study examines the prevalence of restraint usage; perception of nurses and doctors about the practice and whether they were trained to apply physical restraints. The physical restraint prevalence tools were used to observe 172 adult patients and conduct 47 chart audits in the medical-surgical wards and a psychiatric unit in November 2011. Focus group discussions with nurses and doctors were conducted. Quantitative data were analyzed using the SPSS and focus group discussions thematically analyzed. The prevalence of physical restraints between the medical-surgical wards was 75%. Nurses and medical doctors were not formally trained to apply restraint, and had learnt from peer observation. They expressed sadness, guilt, and fear when restraints are used and identified that inadequate institutional support existed. Restraint usage was high, and nurses and doctors experienced moral dilemma when they perceived that lack of formal training and inadequate institutional support may contribute to patient injury.

Mortality, asthma, smoking and acute chest syndrome in young adults with sickle cell disease.

PURPOSE: Sickle cell disease (SCD) patients with asthma have an increased risk of death. Acute chest syndrome (ACS) is a major cause of mortality in patients with SCD, and ACS may be more common in SCD patients who smoke. The purpose of this study was to test the hypothesis that mortality in young adults with SCD would be greater than that of controls during a 10-year period and to determine whether asthma, reduced lung function, ACS episodes, and/or smoking predicted mortality during the follow-up period. METHODS: The outcomes during a 10-year period were ascertained of SCD patients and race-matched controls who had taken part in a pulmonary function study when they were between age 19 and 27 years. Smoking and asthma status and whether they had had ACS episodes were determined, and lung function was measured at the initial assessment. RESULTS: Seventy-five subjects with SCD were followed for 683 patient years. There were 11 deaths with a mortality rate of 1.6 deaths per 100 patient years, which was higher than that of the controls; one death in 47 controls was observed for 469 patient years with a mortality rate of 0.2 per 100 patient years (p = 0.03). There were no significant associations of body mass index, recurrent episodes of acute chest, steady state haemoglobin, or gender with mortality. Adjusting for baseline lung function in SCD patients, "current" asthma [hazard ratio (HR) 11.2; 95 % confidence interval (CI) 2.5-50.6; p = 0.002] and smoking [HR 2.7; (95 % CI 1.3-5.5); p = 0.006] were significantly associated with mortality during the 10-year period. CONCLUSIONS: Our results indicate that young adults with SCD should be discouraged from smoking and their asthma aggressively treated.

Contraceptive usage among Jamaican women with sickle cell disease.

BACKGROUND: The usage of contraceptive methods in young women with sickle cell disease (SCD) and the factors affecting usage are unknown. STUDY DESIGN: Young women (N=132) with SCD attending the Sickle Cell Unit were interviewed regarding their contraceptive usage. SPSS version 12 was used for data analysis. RESULTS: Sixty-four (48%) of women with SCD were using a contraceptive method. The more commonly used methods were condoms (n=25, 39%) and depot medroxyprogesterone acetate (DMPA) (n=18, 28%). Of the nonusers, 52% were not sexually active. The reasons for nonusage in sexually active women included the desire to become pregnant (17), belief that they were unable to get pregnant (11) and health concerns (7). A majority had been informed about contraceptive methods by a trained professional. Sixty-seven percent agreed with at least one of the common Jamaican myths regarding contraceptive usage. CONCLUSIONS: This study demonstrates that 92% of these women with SCD were using contraceptive methods or had reason not to do so. Subjects had been educated about contraceptive methods and appeared to be uninfluenced by local myths regarding contraceptive usage.