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Fulltext The Validation of Questionnaire on End-of-Life Care Knowledge, Perceptions, and Preferences among End-Stage Renal Disease Patients on Hemodialysis

Rozi NRB, Ali WASRW, Draman CRB, Pasi HB

Indian J Palliat Care, 2021 02 17;27(1):99-103.
PMID: 34035625 DOI: 10.4103/IJPC.IJPC_221_20

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 end-of-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.
Impact of parental perinatal depressive and anxiety symptoms trajectories on early parent-infant impaired bonding: a cohort study in east and west coasts of Malaysia

Nasreen HE, Pasi HB, Aris MAM, Rahman JA, Rus RM, Edhborg M

Arch Womens Ment Health, 2022 Apr;25(2):377-387.
PMID: 34313824 DOI: 10.1007/s00737-021-01165-w

The association between maternal depressive and anxiety symptoms and impaired bonding with infants were widely studied, but not in fathers and none in Malaysia. We investigated the impact of different trajectories of perinatal depressive and anxiety symptoms on parent-infant impaired bonding during 2-3 months postpartum in both mothers and fathers in two areas of Malaysia. This study originated from a psychiatric morbidity cohort study carried out in health clinics in east and west Malaysia. Edinburgh Postnatal Depression Scale and anxiety subscale of Depression, Anxiety, and Stress Scale at late pregnancy and 2-3 months postpartum and Postpartum Bonding Questionnaire were completed by 566 mothers and 457 fathers. About 11.7% mothers and 16.1% fathers reported depressive symptoms during pregnancy, 6.5% mothers and 10.5% fathers during 2-3 months postpartum, and 3-4% mothers and fathers both depressive and anxiety symptoms 2-3 months postpartum. The mean impaired bonding score was highest in mothers and fathers who had both depressive and anxiety symptoms 2-3 months postpartum. Impaired bonding is associated with higher EPDS and DASS (anxiety subscale) scores 2-3 months postpartum in both parents. Physical partner violence and deteriorated marital relationship were associated with increased risk of impaired bonding in mothers. The association between depressive, anxiety, and comorbidity of depressive and anxiety symptoms in both mothers and fathers and parent-infant impaired bonding during 2-3 months postpartum urges for screening and treatment of depressive and anxiety symptoms in both parents during early parenthood.
Fulltext Impact of maternal antepartum depressive and anxiety symptoms on birth outcomes and mode of delivery: a prospective cohort study in east and west coasts of Malaysia

Nasreen HE, Pasi HB, Rifin SM, Aris MAM, Rahman JA, Rus RM, et al.

BMC Pregnancy Childbirth, 2019 Jun 14;19(1):201.
PMID: 31200677 DOI: 10.1186/s12884-019-2349-9

BACKGROUND: Antepartum depressive and anxiety symptoms (ADS and AAS) are prevalent in Malaysia. Prior evidence linking maternal ADS and AAS with adverse birth outcomes and caesarean section (CS) or instrumental delivery is conflicting. There is no research in Malaysia on the association between maternal mental disorders and adverse birth outcomes and mode of delivery. This study aims to investigate the independent effect of maternal ADS and AAS on low birth weight (LBW), preterm birth (PTB) and CS or instrumental delivery among women in east and west coasts of Malaysia.
METHODS: We used data from a prospective cohort study of 799 pregnant women from health clinics of two states in east and west coasts of Malaysia. Baseline data were measured at the third trimester of pregnancy on ADS, AAS, socioeconomic condition, anthropometric status, reproductive history and intimate partner violence. Birth outcomes and mode of delivery were determined at the time of delivery. Univariate and multiple Cox's regressions were applied to assess the association between ADS and AAS and LBW, PTB and CS or instrumental delivery.
RESULTS: ADS was significantly associated with an increased risk of giving birth to LBW babies in both east coast (RR = 3.64; 95% CI 1.79-7.40) and west coast (RR = 3.82; 95% CI 1.86-7.84), but not with PTB. AAS was associated with increased risk of both LBW (RR = 2.47; 95% CI 1.39-4.38) and PTB (RR = 2.49; 95% CI 1.16-5.36) in the east coast, but not in west coast. The risk of CS or instrumental delivery was evident among women with ADS (RR = 2.44; 95% CI 1.48-4.03) in west coast only.
CONCLUSION: ADS predicts LBW in both coasts, AAS predicts LBW and PTB in east coast, and ADS predicts CS or instrumental delivery in west coast. Policies aimed at detection and management of ADS and AAS during antenatal check-up in health clinics may help improve birth outcomes and reduce obstetric interventions.
Fulltext Knowledge and Perceptions on End-of-life Care among End-stage Renal Disease Patients on Hemodialysis

Rozi NRB, Bin Wan Ali WASR, Bin Draman CR, Pasi HB, Rathor MY

Saudi J Kidney Dis Transpl, 2022 Sep 01;33(5):664-673.
PMID: 37955458 DOI: 10.4103/1319-2442.389426

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.