The Unmet Needs Among Parents of Disabled Children at Support Institutions in Kelantan, Malaysia

Abstract@#Introduction: Parents of a disabled child might require extra basic needs which most of the time are unmet due to several factors. Thus, understanding the unmet needs could help the respective institution to provide and prioritise the needs required. Methods: A cross-sectional study was conducted between September to December 2013 to determine the proportion of unmet needs among parents of children with disabilities at support institutions in Kelantan, Malaysia. Biological parents of disabled children aged between 2 to 18 years old were included in the study. A 35item validated Malay version of the Family Needs Survey was used in this study. A scoring of 4-point Likert scale was used; the prevalence of unmet needs was determined based on the proportion of those who scored “3” from each domain. Results: A total of 226 parents were involved in the present study. The mean age of parents and children were 44.6 (8.99) and 10.2 (4.85) years old respectively. The most common type of disabilities was learning disability (n=151, 66.8%). The unmet need for information has the highest prevalence (97.8%), followed by the unmet need for social support (93.8%). Conclusion: Parents with disabled children require information to guide them in managing their children. Findings from this study may better enable policymakers to devote resources in assisting parents, and service providers in designing appropriate interventions in fulfilling the unmet needs of these parents.

Placebo Controlled Trials: Interests of Subjects versus Interests of Drug Regulators

The use of placebo-controlled trials in situations where established therapies are available is considered ethically problematic since the patients randomised to the placebo group are deprived of the beneficial treatment. The pharmaceutical industry and drug regulators seem to argue that placebo-controlled trials with extensive precautions and control measures in place should still be allowed since they provide necessary scientific evidence for the efficacy and safety of new drugs. On the other hand, the scientific value and usefulness for clinical decision-making may be much higher if the new drug is compared directly to existing therapies. As such, it may still be unethical to impose the burden and risk of placebo-controlled trials on patients even if extensive precautions are taken. A few exceptions do exist. The use of placebo-controlled trials in situations where an established, effective and safe therapy exists remains largely controversial.

Prevalence of asthma-like symptoms and assessment of lung function in schoolchildren born with low birth weight

<p><b>INTRODUCTION</b>This study aimed to determine the prevalence of asthma-like symptoms among schoolchildren with low birth weight (LBW), and to compare the lung function of these children with that of children with normal birth weight.</p><p><b>METHODS</b>This was a comparative cross-sectional study. We recruited children aged 8-11 years from eight primary schools in Kota Bharu, Kelantan, Malaysia. The children were divided into two groups: those with LBW (< 2,500 g) and those with normal birth weight (≥ 2,500 g). Parents of the enrolled children were asked to complete a translated version of the International Study of Asthma and Allergies in Childhood questionnaire. Lung function tests, done using a MicroLoop Spirometer, were performed for the children in both groups by a single investigator who was blinded to the children's birth weight.</p><p><b>RESULTS</b>The prevalence of 'ever wheezed' among the children with LBW was 12.9%. This value was significantly higher than that of the children with normal birth weight (7.8%). Forced vital capacity (FVC), forced expiratory volume in one second, and forced expiratory flow when 50% and 75% of the FVC had been exhaled were significantly lower among the children with LBW as compared to the children with normal birth weight.</p><p><b>CONCLUSION</b>LBW is associated with an increased prevalence of asthma-like symptoms and impaired lung function indices later in life. Children born with LBW may need additional follow-up so that future respiratory problems can be detected early.</p>

Informed Consent Template and Guidelines on the Ethical Practice in Human Genetics and Human Genomic Research; Initiatives of the Universiti Sains Malaysia

Malaysia is advancing and nearly on pace with the international scientific community in human genetics and human genomics research. However, this research poses unique challenges. Although Malaysia already regulates medical genetic services, these regulations are insufficient for coping with the ethical issues emerging from recent genomic technologies. The Universiti Sains Malaysia recently created in-house guidelines and an informed consent template for genetic and genomic research. This article presents these guidelines and the informed consent template and discusses the justification and the background of the initiative. We also propose recommendations pertaining to local social studies and regulatory arrangements.

A Preliminary Study on the Reliability of the Malay Version of PedsQL™ Family Impact Module among Caregivers of Children with Disabilities in Kelantan, Malaysia

Background: No previous study has assessed the impact of childhood disability on parents and family in the context of Malaysia, and no instrument to measure this impact has previously been available. The objective of this cross-sectional study was to determine the reliability of a Malay version of the PedsQL™ Family Impact Module that measures the impact of children with disabilities (CWD) on their parents and family in a Malaysian context. Methods: The study was conducted in 2009. The questionnaire was translated forward and backward before it was administered to 44 caregivers of CWD to determine the internal consistency reliability. The test for Cronbach’s alpha was performed. Results: The internal consistency reliability was good. The Cronbach’s alpha for all domains was above 0.7, ranging from 0.73 to 0.895. Conclusion: The Malay version of the PedsQL™ Family Impact Module showed evidence of good internal consistency reliability. However, future studies with a larger sample size are necessary before the module can be recommended as a tool to measure the impact of disability on Malay-speaking Malaysian families.

The Effect of Delayed Transportation of Blood Samples on Serum Bilirubin Values in Neonates

Background: Delays in transporting blood samples may cause inaccurate results. Samples may be exposed to light or heat during delays, resulting in the degradation of analytes, for example, bilirubin. This study was done to determine the effect of delays in the transportation of blood samples on serum bilirubin test results. Methods: Samples taken from neonates admitted to a tertiary hospital with jaundice were included in the study. The samples were collected through venipuncture in 3 labelled containers. The first container was sent immediately to the laboratory, while the second and third containers were sent after being kept in the ward for 1 and 3 hours, respectively. Bilirubin values were measured colourimetrically at a wavelength of 578 nm using a Roche Hitachi 912 Chemistry Analyser upon arrival in the laboratory. Results: A total of 36 serum samples were studied. The mean of the indirect bilirubin measurements for 0-, 1-, and 3-hour samples were 174 (SD 68.65), 186.97 (SD 60.47), and 184.56 (SD 66.93), respectively. There was a significant difference in the mean indirect bilirubin measurement of 1-hour samples (P = 0.047, 95% CI -24.66 to -1.18) and 3-hour samples (P = 0.045, 95% CI -19.77 to -0.23) compared with 0-hour samples. There were no significant differences observed in either the mean total bilirubin or the mean direct bilirubin measurements of different time intervals. Conclusion: This study confirms that delays in the transportation of blood samples influence the bilirubin test results.