The validation of questionnaire on end‑of‑life care knowledge, perceptions, and preferences among end‑stage renal disease patients on hemodialysis

Introduction: End-of-life care issues for end-stage renal disease (ESRD) patients are still not fully highlighted in trials and clinical practice. Due to the inadequacy, exploring patients’ knowledge, perceptions, and preferences is essential to improve the delivery of care. This was performed using questionnaires which have been a widely useful tool in medical researches. Up to date, there was no published, validated questionnaire developed in Malaysia for such purposes yet. Objective: This study aimed to develop and validate the questionnaire on endof-life care knowledge, perceptions, and preferences among hemodialysis (HD) patients. Subject and Methods: A cross-sectional study was conducted among 92 HD patients from 14 centers. It involved four phases including (i) developing the questionnaire and pretesting, (ii) improving and editing and redistribution to respondents for the pilot study, (iii) factor analysis (FA), and (iv) internal consistency reliability testing. Results: The result of FA with varimax rotation performed identified three domains for the 41 items, with 10–20 items in each domain. All the 41 analyzed items had a good factor loading of more than 0.4 with the lowest value of 0.421 and were nicely fit into three respective domains: knowledge, perceptions, and preferences. Internal consistency reliability analysis Cronbach’s α values were between 0.5 and 0.7 for all domains, higher than the level set for this study (0.5). Conclusion: The questionnaire was successfully validated and considered a useful tool in describing ESRD patients’ end-of-life care knowledge, perceptions, and preferences

Role of therapeutic plasma exchange in severe thyrotoxicosis secondary to grave’s disease with several organ decompensation: a case report and review of literature

We report a case of 45 year-old lady whom had received therapeutic plasma exchange for severe thyrotoxicosis with several organ decompensations due to the overwhelming autoimmunity. She presented with symptoms of breathlessness, lethargy and atrial fibrillation with rapid ventricular response. She had underlying, untreated Grave’s disease for several years. Her serum thyroxine levels were markedly elevated. Despite reduction in thyroid hormones levels after initial treatment with anti-thyroid drug and lugol’s iodine, her clinical condition deteriorated with hypotension, worsening respiratory distress, acute kidney injury and liver failure. We suspect that the overwhelming autoimmunity has led to the consequent organs decompensation. Therapeutic plasma exchange was initiated which resulted in improvement of the clinical and biochemical parameters and thus, potentially appears to have an effective role in a complicating, overwhelming autoimmunity of severe thyrotoxicosis secondary to Grave’s disease

The validation of questionnaire on end of life care knowledge, erceptions and preferences among end stage renal disease patients on haemodialysis in Kuantan

Introduction: There has been an increasing awareness on the end of life care for end stage renal disease (ESRD) patients and patients’ factors have been identified as pivotal elements in directing its implementation. Questionnaire has been a useful tool by researchers to assess on patients’ knowledge, perceptions and preferences on end of life care. However, up to date, there is no validated questionnaire developed in Malaysia for such purposes. Thus, this study aims to develop and validate questionnaires on end of life care knowledge, perceptions and preferences among ESRD patients in Kuantan. Materials and method: A cross-sectional study among haemodialysis (HD) patients aged 18 and above from 14 out-patient HD centres was performed. This study was divided into 4 phases i) developing the questionnaire involving related specialists and pre testing, ii) improving and editing the questionnaire and redistribution to 50 respondents for the pilot study, iii) factor analysis and iv) internal consistency reliability testing of the questionnaire. Results: The result of Factor analysis with Varimax rotation performed identified 3 domains for the 41 items, with 10 to 20 items in each domain. All the 41 analyzed items had a good factor loading of more than 0.4 with the lowest value of 0.421 and were nicely fit into 3 respective domains; knowledge, perception and preference. Internal consistency reliability analysis performed indicates that Cronbach’s α was between 0.5 to 0.7 for all factors which were higher than the level set for this study which is 0.5. Conclusion: The questionnaire is successfully validated and considered as a useful tool to be used. Nonetheless, improvement will still be necessary from time to time to ensure its relevance especially if it is to be used by different populations or countries of different background than Malaysia

Ethical issues in kidney transplantation and “an” Islamic perspective

Kidney transplantation (KT) is currently the most realistic treatment option for patients with end-stage renal disease (ESRD) as it enables them to live longer and provides better quality of life post-transplantation. Before the 1960s, all these patients would die as there was no treatment available. It is the commonest solid organ transplantation carried out in the world at the moment. Organs are harvested from living or cadaveric donors, with living kidney donor organs generally functioning better and for longer periods of time compared to the latter. Issues surrounding organ transplantation in general and kidney transplantation in particular, are fraught with ethical dilemmas due to the shortage of organs, the logistics behind the acquisition of organs, use of living donors including minors and the black market that has sprouted thereof. Entwined in this quagmire are the legal, social and psychological consequences for the individuals involved and the society at large. It is further compounded by religious concerns, which have a significant influence on the society’s acceptance of the practice of organ donation. The practice of organ transplantation is generally accepted by most Islamic scholars asit is concordant to the objectives of Islamic Law (maqasid al Sharī’ah) which prioritize the preservation of human life. However, resistances do arise from some jurists and even physicians of the same Islamic faith despite a fatwas decreeing that organ and tissue transplantations are permissible in Islam under certain conditions. The take-up of organ-donation is still largely poor especially among Muslims. This article therefore hopes to explore the various moral and ethical issues surrounding KT as well as the Islamic viewpoints emanating from it. We hope that this knowledge and understanding will benefit both health-care personnel and the public in general

Knowledge and Perceptions on End-of-life Care among End-stage Renal Disease Patients on Hemodialysis

The role of end-of-life care is fundamental for end-stage renal disease (ESRD) patients, who are known to have a high morbidity and mortality rate despite being on dialysis. This requires effective communication and shared decision-making. Thus, exploring patients' knowledge and perceptions is essential to improve the gaps in delivering end-of-life care. This study aimed to describe the knowledge and perceptions of end-of-life care among ESRD patients on hemodialysis (HD). This was a cross-sectional study involving 14 outpatient HD centers in Kuantan, Malaysia. Patients were recruited from March to June 2019. A validated questionnaire was delivered via interview-based surveys by the researcher or trained interviewers. The majority of the respondents had poor knowledge of the disease and end-of-life care. However, more than 70% of the respondents felt that it was important for them to be actively involved in medical decision-making, as well as being prepared and planning for death. End-of-life needs, which included management of symptoms and psychological, social, and spiritual support, were important to most respondents. Additionally, patients with higher educational backgrounds were observed to have higher scores for both knowledge and perceptions (P <0.05). The study found poor knowledge but acceptable perceptions among patients. This highlights the gaps in the current local approach in clinical practice to end-of-life care in ESRD

Malaysian public interest in common medical problem: a 10-year Google Trends analysis

Background An analysis of internet search has been performed to evaluate the public interest in health problems. Google Trends (GT) serves as a free platform to analyse the search traffic for specific terms in the Google search engine. This observational study aims to investigate the trend of Malaysian population in using the Google search engine on common medical problems and explore the geographical influence on the language used. Material and method Fifteen pairs of keywords, in Malay and English language, were chosen after going through forward and backward translation and vetting by a panel of experts. GT data for the selected keywords from 1st of January 2011 to 31st of December 2020 was extracted. Trend analysis was performed using paired t-test between the first half of the decade and the second half of the decade. The different languages used were analysed based on geographical variation using paired t-test. Results The public interest on those keywords was markedly increased in the second half of the decade with 29 out of 30 keywords showing statistically significant difference. Majority of the states preferred to use Malay keywords, especially those residing at the East Coast of Peninsular Malaysia. Conclusion This observational study illustrates the ability of GT to track healthcare interest among Malaysian population. GT provides a good platform to analyse specific healthcare interest in Malaysian population, but investigators have to bear in mind the geographical influence on the language used