METHODS: A comprehensive search was done on 3 databases, namely PubMed, ScienceDirect, and Web of Science, to identify original cost-of-illness studies that only evaluate the economic burden of AD up to August 2022. The risk of bias in the studies was assessed using Consolidated Health Economic Evaluation Reporting Standards 2022 criteria. Cost articles without specifying etiology of AD or those in non-English were excluded.
RESULTS: Twelve of 5536 studies met the inclusion criteria. The total annual cost of AD per capita ranged from US $468.28 in mild AD to US $171 283.80 in severe AD. The cost of care raised nonlinearly with disease severity. Indirect caregiving cost represented the main contributor to societal cost in community-dwelling patients. When special caregiving accommodation was opted in daily care, it results in cost shifting from indirect cost to direct nonmedical cost. Formal caregiving accommodation caused increase in direct cost up to 67.3% of overall economic burden of the disease.
CONCLUSIONS: AD exerts a huge economic burden on patients and caregivers. Overall rise of each cost component could be anticipated with disease deterioration. Choice of special caregiving accommodation could reduce caregiver's productivity loss but increase the direct nonmedical expenditure of the disease from societal perspective.
CONCLUSIONS: Therapeutic equipoise, for psychiatric care, is an aspiration rather than a position easily achieved. In day-to-day clinical practice, there will be unexpected demands and barriers that cannot always be accommodated or surmounted. Psychiatrists can work collaboratively with patients, carers, and colleagues in conceptualising and care-planning to avoid extremes of therapeutic hubris and despair, and to adapt evidence-based care more effectively so that it is suited to the patient and their circumstances.
METHOD: Surveys (Study 1) and semi-structured interviews (Study 2) were used to collect data. Thirty-eight respondents completed the Affiliate Stigma Scale (ASS), Caregiver Burden Inventory (CBI), and Care-related Quality of Life (CarerQol) scales (GMFCS). Eleven respondents took part in semi-structured interviews, which were then thematically evaluated.
RESULTS: Parents did not feel stigmatized because they had a child with CP. However, parents needed some form of short-term relief from caregiving. After controlling for demographics, high stress respondents experienced high affiliate stigma whereas low stress respondents had better quality of life. Although the respondents with less stigma had a better quality of life, this effect was moderate. Three major themes emerged from the interviews.
CONCLUSION: Counseling, support groups, and helper services should be offered to parents. Also, healthcare professionals participating in CP rehabilitation, community-based rehabilitation, and health institutions should be educated on how to better help parents of children with CP.
MATERIALS AND METHODS: The research instruments used included The McMaster Family Assessment Device Adaptation, IEXPAC, and S.N.Q. 22, F.Q., P.S.Q., Social Support Questionnaire shortened version, The Family Focused Mental Health Practice Questionnaire and extraversion personality questionnaire. The questionnaire was distributed to caregivers with a population of 175 individuals. The sample size of this study was 133 individuals selected through proportional random sampling. The data were analysed using Structural Equation Modeling Partial Least Square (SEM-PLS) with Amos software v.26.0.
RESULTS: The phase one research showed that intention and satisfaction are the leading indicators of family acceptance that can influence family roles. At the same time, family acceptance is influenced by personal character (p≤0.001), care experience (p≤0.001), social support (p≤0.001), social norms (p=0.004), symptom severity (p≤0.001), and stigma (p≤0.001). Additionally, family acceptance significantly impacted the family's caregiving role (CR=6.573, p≤0.001).
CONCLUSION: It was found that the family acceptance model to improve the family's role in the care of patients with severe mental disorders focuses on the acceptance that the family has to be able to carry out its role well in patients. To improve family acceptance, families still lack the personal character expected in caring for patients with severe mental disorders at home. It is necessary to increase commitment to care and positive values in life.
METHODS: A parallel, open-label, 2-arm prospective, pilot randomised controlled trial was conducted at a long-term stroke service at a university based primary care clinic. All stroke caregivers aged ≥ 18 years, proficient in English or Malay and smartphone operation were invited. From 147 eligible caregivers, 76 participants were randomised to either SRA™ intervention or conventional care group (CCG) after receiving standard health counselling. The intervention group had additional SRA™ installed on their smartphones, which enabled self-monitoring of modifiable and non-modifiable stroke risk factors. The Stroke Riskometer app (SRATM) and Life's Simple 7 (LS7) questionnaires assessed stroke risk and lifestyle practices. Changes in clinical profile, lifestyle practices and calculated stroke risk were analysed at baseline and 3 months. The trial was registered in the Australia-New Zealand Clinical Trial Registry, ACTRN12618002050235.
RESULTS: The demographic and clinical characteristics of the intervention and control group study participants were comparable. Better improvement in LS7 scores were noted in the SRA™ arm compared to CCG at 3 months: Median difference (95% CI) = 0.88 (1.68-0.08), p = 0.03. However, both groups did not show significant changes in median stroke risk and relative risk scores at 5-, 10-years (Stroke risk 5-years: Median difference (95% CI) = 0.53 (0.15-1.21), p = 0.13, 10-years: Median difference (95% CI) = 0.81 (0.53-2.15), p = 0.23; Relative risk 5-years: Median difference (95% CI) = 0.84 (0.29-1.97), p = 0.14, Relative risk 10-years: Median difference (95% CI) = 0.58 (0.36-1.52), p = 0.23).
CONCLUSION: SRA™ is a useful tool for familial stroke caregivers to make lifestyle changes, although it did not reduce personal or relative stroke risk after 3 months usage.
TRIAL REGISTRATION: No: ACTRN12618002050235 (Registration Date: 21st December 2018).
METHODS: A total of 236 breast cancer patients from China completed the Chinese Version of the Posttraumatic Stress Disorder Symptom Scale (PSS), the Chinese version of the Patient Health Questionnaire (PHQ-9), the Chinese version of the General Anxiety Symptoms Scale (GAD-7). In addition, caregivers of these breast cancer patients were surveyed by the Caregiver Self-Assessment Questionnaire (CSAQ).
RESULTS: Structural equation model showed that our model fitted well [χ2 /df = 1.966, TLI = 0.959, CFI = 0.994, RMSEA (90% CI) = 0.065 (0-0.12)] and revealed that anxiety, but not depression, mediated the relationship between PTSS in breast cancer patients and caregiver burden.
CONCLUSION: The level of PTSS was positively correlated with anxiety and depression in breast cancer patients, and the level of anxiety and depression was positively related to caregiver burden. The PTSS of patients positively predicted caregiver burden and this relationship appears to be mediated by the patient's anxiety.
OBJECTIVE: To assess the uses, needs and preferences towards a dietary application among the caregivers of AAMDs patients.
METHODS: We conducted a mixed-method study comprising focus group discussion (FGD) and a quantitative questionnaire survey among caregivers of patients aged between 6-month-old to 18-year-old with AAMDs who are receiving active treatment, both medical and dietetic treatment in the genetic clinic, Hospital Kuala Lumpur (HKL).
RESULTS: A total of 76 and 20 caregivers participated in the survey and FGD respectively. All the caregivers (100%) possessed a smartphone and most of the caregivers (89.5%) had the experience of using smartphone or other technological devices to search for health or medical information. However, majority of the participants were not aware of the existence of any web-based or mobile application related to AAMDs (89.5%). While for the qualitative part, three themes emerged: (1) experience with current source of information; (2) needs for supporting self-management educational contents and needs for technological design application. Most of the caregivers used the nutritional booklet as sources of reference but some of them searched for web-based information. Features perceived by the caregivers included a digital food composition database, sharing diet recall with healthcare providers, self-monitoring diet intake as well as low protein recipes. Besides that, user-friendly and ease to use were also perceived as the important features by the caregivers.
CONCLUSION: The identified features and needs by the caregivers should be integrated into the design of the apps to promote acceptance and usage.
METHODS: A qualitative study design was employed. Data were collected through observations and semi-structured interviews of 12 caregivers and 11 people with dementia (PWD) at seven secondary care facilities. Observations were written in the field notes, and interviews were audio-recorded and transcribed. All data were subjected to thematic analysis.
RESULTS: Some personalised non-pharmacological interventions, such as physical exercise, music therapy, reminiscence therapy and pet therapy, were conducted in several nursing care centres. Collaborative care from the care providers and family members was found to be an important facilitating factor. The lack of family support led to care providers carrying additional workload beyond their job scope. Other barriers to non-pharmacological interventions were cultural and language differences between the care providers and PWD, inadequate staff numbers and training, and time constraints.
CONCLUSION: Although non-pharmacological approaches have been used to some extent in Malaysia, continuous education and training of healthcare providers and the family members of PWD is needed to overcome the challenges to their successful implementation.
OBJECTIVES: This study aims to evaluate the prevalence and degree of topical corticosteroid phobia and its impact on treatment adherence in various dermatological conditions. Additionally, we explored the sources of information regarding topical corticosteroids.
MATERIALS AND METHODS: A cross-sectional study was conducted among 300 participants with topical corticosteroid usage experience. Topical corticosteroid phobia was assessed with the topical corticosteroid phobia (TOPICOP) scale, and treatment adherence was measured with the Elaboration d'un outil d'evaluation de l'observance des traitements medicamenteux (ECOB) score. Information sources regarding topical corticosteroids were identified, and their level of trust was assessed. The data were collected via questionnaires in three languages, namely English, Malay and Mandarin.
RESULTS: The study found that topical corticosteroid phobia was prevalent, with 98% of participants expressing a certain degree of phobia. The mean global TOPICOP score was 32.7 ± 6.7%. The mean score of each domain was 27.1 ± 17.2% for knowledge and belief, 35.7 ± 23.8% for fears and 40.8 ± 25.8% for behaviour. Patients/caregivers who have eczema, highly educated, severe disease, low tolerability to symptoms, previous adverse effects with topical corticosteroids and tend to traditional/non-steroidal alternative therapy usage had a significant association with topical corticosteroid phobia (p<0.05). Dermatologists were the most common and trusted source of information on topical corticosteroids.
CONCLUSIONS: This study highlights the widespread topical corticosteroid phobia in dermatological practice. Dermatologists should take the lead in combating steroid phobia and provide patients with public awareness regarding topical corticosteroids to improve treatment adherence and therapeutic outcomes.
METHODS: Purposive sampling was used to select the 73 caregivers of children with ALL who participated in this cross-sectional study. The Post-traumatic Stress Disorder Checklist for DSM-5 (PCL-5), Beck Depression Inventory (BDI), and Beck Anxiety Inventory (BAI) were used to measure psychological distress.
RESULT: There was a low prevalence (11%) of post-traumatic stress disorder (PTSD) among the participants. Although all the criteria for PTSD were not met, a few post-traumatic symptoms remained, suggesting that PTSS was likely present. Most of the participants reported minimal symptoms of depression (79.5%) and anxiety (65.8%). Anxiety, depression, and ethnicity predicted the PTSS scores (R2 = .77, p =.000). Subsequently, depression predicted the PTSS scores (R2 = 0.42, p =0.000). Participants of 'Other' or 'Indigenous' ethnicity had lower PTSS scores and higher anxiety scores (R2 = 0.75, p =0.000) than participants of Malay ethnicity.
CONCLUSION: The caregivers of children with ALL experience post-traumatic stress symptoms (PTSS), depression, and anxiety. These variables co-exist and may have different trajectories in different ethnic groups. Therefore, healthcare providers should take ethnicity and psychological distress into consideration when providing paediatric oncology treatment and care.
OBJECTIVE: This study aimed to translate and validate the CAFU instrument into the Malay language and test the validity and reliability of the CAFU among informal stroke caregivers in Malaysia.
METHODS: A standard forward-backward translation method was employed to translate CAFU. Subsequently, 10 expert panels were included in the validation process, and thereafter reliability testing was conducted among 51 stroke caregivers. The validation of the instrument was determined by computing the content validity indices (CVIs), and we used the Cronbach's alpha method to explore the internal consistency of the overall score and subscales scores of the Malay-CAFU. Finally, the explanatory factor analysis used principal component extraction and a varimax rotation to examine construct validity.
RESULTS: All items of the Malay-CAFU had satisfactory item-level CVI (I-CVI), with values greater than 0.80, and the scale-level CVI (S-CVI) was 0.95. These results indicate that the Malay-CAFU had good relevancy. The internal consistency for the reliability test showed a Cronbach's alpha value of 0.95 for the overall score. The eigenvalues and scree plot supported a two-factor structural model of the instrument. From the explanatory factor analysis, the factor loadings ranged from 0.82 to 0.90 and 0.56 to 0.83, respectively.
CONCLUSION: The Malay-CAFU questionnaire is a valid and reliable instrument to assess the dependence level of stroke survivors and the upset level of informal stroke caregivers in Malaysia.
METHODS: A cross-sectional study was conducted among 128 caregivers of children with ASD in Kota Bharu, Kelantan from May to August 2020, using convenience sampling. Validated questionnaires were used to assess the knowledge and attitudes toward children with ASD. The data were analyzed using SPSS version 24. Descriptive statistics and simple and multiple logistic regression analyses were then performed.
RESULTS: The response rate was 100%. The proportion of good knowledge and attitudes toward children with ASD among caregivers was 85.1% and 88.3%, respectively. Factors significantly associated with good knowledge were being female (OR (95% CI) 2.79 [0.99-7.90]) and ASD children being non-first-born children (OR (95% CI) 0.41 [0.15-1.12]). Factors significantly associated with good attitudes were age of 30 years and older (OR (95% CI) 0.13 [0.03-0.62]) and caregiver having other children with other types of learning difficulties (OR (95% CI) 0.15 [0.04, 0.52]).
CONCLUSIONS: The proportion of caregivers with good knowledge of ASD and good attitudes toward children with ASD was high. The caregiver's age and sex, the position of the ASD child among the siblings, and the presence of other types of learning disorders in the family need to be considered when managing children with ASD.