METHODS: We conducted a qualitative study involving 12 patients diagnosed with metastatic breast cancer, 16 healthcare professionals and 5 policymakers from surgical and oncology departments at public healthcare centres in Malaysia. Semi-structured in-depth interviews and focus group discussions were conducted. The interviews were recorded, transcribed verbatim and analysed using the thematic approach. Nvivo software was used to manage and analyse the data.
RESULTS: Five main themes emerged from the study: healthcare provider-patient communication, workforce availability, cultural and belief systems, goals of care and paternalism versus autonomy. Other strategies proposed to overcome barriers to implementing shared decision-making were training of healthcare professionals and empowering nurses to manage patients' psychosocial issues.
CONCLUSION: This study found that practising shared decision-making in the public health sector remains challenging when managing patients with metastatic breast cancer. The utilization of decision-making tools, patient empowerment and healthcare provider training may help address the system and healthcare provider-patient barriers identified in this study.
PATIENT OR PUBLIC CONTRIBUTION: Patients were involved in the study design, recruitment and analysis.
METHODS: The decision aid prototype was developed following a literature review and six focus groups. Alpha testing assessed its comprehensibility, acceptability, usability and desirability through user-centered cognitive interviews. Beta-testing evaluated preliminary evidence on its efficacy using the SDM Scale and PDMS. Feasibility was assessed by timing the consultation.
RESULTS: The alpha testing demonstrated that the decision aid was patient-oriented, comprehensible, comprehensive, concise and objective with an appealing design. Beta-testing indicated that PtDA significantly increased patients satisfaction with SDM from patients' [83.32 (13.92) vs 85.76 (13.80); p patients for decision making from the patients' [PDMS patients: 84.10 (12.69)] and physicians' [PDMS physicians: 83.78 (16.62)] perspectives as well. There was no change in the consultation time between the control and the intervention groups.
CONCLUSIONS: We developed an antidepressant PtDA for Malaysian patients with MDD that increases patients' involvement in shared decision making and enhances their preparedness for decision making.
PRACTICE IMPLICATIONS: Using the PtDA can support collaborative decision-making in routine clinical practice without extending the consultation time.
Objective: To examine the effects of a quality improvement intervention comprising information and communications technology and contact with nonphysician personnel on the care and cardiometabolic risk factors of patients with type 2 diabetes in 8 Asia-Pacific countries.
Design, Setting, and Participants: This 12-month multinational open-label randomized clinical trial was conducted from June 28, 2012, to April 28, 2016, at 50 primary care or hospital-based diabetes centers in 8 Asia-Pacific countries (India, Indonesia, Malaysia, the Philippines, Singapore, Taiwan, Thailand, and Vietnam). Six countries were low and middle income, and 2 countries were high income. The study was conducted in 2 phases; phase 1 enrolled 7537 participants, and phase 2 enrolled 13 297 participants. Participants in both phases were randomized on a 1:1 ratio to intervention or control groups. Data were analyzed by intention to treat and per protocol from July 3, 2019, to July 21, 2020.
Interventions: In both phases, the intervention group received 3 care components: a nurse-led Joint Asia Diabetes Evaluation (JADE) technology-guided structured evaluation, automated personalized reports to encourage patient empowerment, and 2 or more telephone or face-to-face contacts by nurses to increase patient engagement. In phase 1, the control group received the JADE technology-guided structured evaluation and automated personalized reports. In phase 2, the control group received the JADE technology-guided structured evaluation only.
Main Outcomes and Measures: The primary outcome was the incidence of a composite of diabetes-associated end points, including cardiovascular disease, chronic kidney disease, visual impairment or eye surgery, lower extremity amputation or foot ulcers requiring hospitalization, all-site cancers, and death. The secondary outcomes were the attainment of 2 or more primary diabetes-associated targets (glycated hemoglobin A1c <7.0%, blood pressure <130/80 mm Hg, and low-density lipoprotein cholesterol <100 mg/dL) and/or 2 or more key performance indices (reduction in glycated hemoglobin A1c≥0.5%, reduction in systolic blood pressure ≥5 mm Hg, reduction in low-density lipoprotein cholesterol ≥19 mg/dL, and reduction in body weight ≥3.0%).
Results: A total of 20 834 patients with type 2 diabetes were randomized in phases 1 and 2. In phase 1, 7537 participants (mean [SD] age, 60.0 [11.3] years; 3914 men [51.9%]; 4855 patients [64.4%] from low- and middle-income countries) were randomized, with 3732 patients allocated to the intervention group and 3805 patients allocated to the control group. In phase 2, 13 297 participants (mean [SD] age, 54.0 [11.1] years; 7754 men [58.3%]; 13 297 patients [100%] from low- and middle-income countries) were randomized, with 6645 patients allocated to the intervention group and 6652 patients allocated to the control group. In phase 1, compared with the control group, the intervention group had a similar risk of experiencing any of the primary outcomes (odds ratio [OR], 0.94; 95% CI, 0.74-1.21) but had an increased likelihood of attaining 2 or more primary targets (OR, 1.34; 95% CI, 1.21-1.49) and 2 or more key performance indices (OR, 1.18; 95% CI, 1.04-1.34). In phase 2, the intervention group also had a similar risk of experiencing any of the primary outcomes (OR, 1.02; 95% CI, 0.83-1.25) and had a greater likelihood of attaining 2 or more primary targets (OR, 1.25; 95% CI, 1.14-1.37) and 2 or more key performance indices (OR, 1.50; 95% CI, 1.33-1.68) compared with the control group. For attainment of 2 or more primary targets, larger effects were observed among patients in low- and middle-income countries (OR, 1.50; 95% CI, 1.29-1.74) compared with high-income countries (OR, 1.20; 95% CI, 1.03-1.39) (P = .04).
Conclusions and Relevance: In this 12-month clinical trial, the use of information and communications technology and nurses to empower and engage patients did not change the number of clinical events but did reduce cardiometabolic risk factors among patients with type 2 diabetes, especially those in low- and middle-income countries in the Asia-Pacific region.
Trial Registration: ClinicalTrials.gov Identifier: NCT01631084.
OBJECTIVE: This study investigated whether the inclusion of video games in the upper limb amputee rehabilitation protocol could have a beneficial impact for muscle preparation, coordination, and patient motivation among individuals who have undergone transradial upper limb amputation.
METHODS: Ten participants, including five amputee participants and five able-bodied participants, were enrolled in 10 1-hour sessions within a 4-week rehabilitation program. In order to investigate the effects of the rehabilitation protocol used in this study, virtual reality box and block tests and electromyography (EMG) assessments were performed. Maximum voluntary contraction was measured before, immediately after, and 2 days after interacting with four different EMG-controlled video games. Participant motivation was assessed with the Intrinsic Motivation Inventory (IMI) questionnaire and user evaluation survey.
RESULTS: Survey analysis showed that muscle strength and coordination increased at the end of training for all the participants. The results of Pearson correlation analysis indicated that there was a significant positive association between the training period and the box and block test score (r8=0.95, P
OBJECTIVE: To determine the parents'/patients' perception on the informed consent process prior to posterior spinal fusion (PSF) for adolescent idiopathic scoliosis (AIS) patients.
SUMMARY OF BACKGROUND DATA: Understanding parents/patients perspective on the process is important in order to achieve the goal of consent and prevent medico-legal implications.
METHODS: Fifty AIS patients operated between August 2019 and November 2019 were prospectively recruited. Parents'/patients' perceptions on three sections were evaluated: the process of the informed consent, specific operative risk which they were most concerned with and the accountability of surgeons for the surgical risks. These data were ranked and scored using a 5-point Likert Scale. Preferences were reported in mean and standard deviation. Differences in terms of preferences were studied using One-way analysis of variance (ANOVA) analysis and deemed significant when P patients preferred the inform consent to be explained more than once (P = 0.021), once during clinic consultation and once during admission (4.2 ± 1.0). Consent taking by both attending surgeons was preferred (4.5 ± 0.6) compared with other healthcare providers, P patients would still hold the surgeon accountable for any complications despite signing the informed consent and they felt that surgeons were directly responsible for screw-related injuries (3.9 ± 0.9), neurological injury (3.8 ± 0.9), and intraoperative bleeding (3.7 ± 0.9).
CONCLUSION: Parents/patients preferred the attending surgeons to personally explain the informed consent, more than once with the use of visual aid. They would still hold the surgeons accountable when complications occur despite acceptance of the informed consent.
LEVEL OF EVIDENCE: 2.
METHOD: A cross-sectional descriptive study was conducted among 450 nurses from 37 wards in Hospital Kuala Lumpur. Nurses on shift duty were recruited by convenience sampling from the Medical, Surgery, Obstetrics & Gynaecology, Orthopaedic and Paediatric wards. Using a validated questionnaire (Handover Evaluation Scale), nurses self-rated their perceptions using a 7-point scale and provided open-ended responses to the strengths and challenges that they faced. Descriptive and inferential analyses were done while open-ended questions were summarised based on key themes.
RESULTS: A total of 414 nurses completed the survey (92.0% response rate). Nurses had an overall mean (SD) perception score of 5.01 (SD 0.56). They perceived good interaction and support during handover and on the quality of information that they received, with mean scores of 5.54 (SD 0.79) and 5.19 (SD 0.69), respectively. There was an association between the departments where the nurses worked and their overall perceptions on nursing handover (p<0.001). Interruptions being the most common theme emerged from the open-ended section.
CONCLUSION: Despite having substantial interaction and support amongst nurses, opportunities for improvements were noted. Improvements in the quality of handover information and reducing interruptions should be the main emphases as these were perceived to be essential in the current handover practices by nurses.
METHODS: A cross-sectional study was conducted in an urban, public primary care clinic. Convenience sampling was used to recruit participants, and audio-recorded consultations were scored for SDM levels by two independent raters using the OPTION tool. Univariate and multivariate analysis was conducted to determine factors significantly associated with SDM levels.
RESULTS: 199 patients and 31 doctors participated. Mean consultation time was 14.3 min (+ SD 5.75). Patients' age ranged from 18 to 87 years (median age of 57.5 years). 52.8 % of patients were female, with three main ethnicities (Malay, Chinese, Indian). The mean OPTION score was found to be 7.8 (+ SD 3.31) out of 48. After a multivariate analysis, only patient ethnicity (β= -0.142, p Patients in Malaysia experience extremely poor levels of SDM in general practice. Higher scores were associated with increased consultation time and patient ethnicity.
PRACTICE IMPLICATIONS: Malaysian general practitioners should aim to develop and practice cultural competency skills to avoid biased SDM practice towards certain ethnicities.
MAIN BODY: As an exemplar, we reflect on how, in the Asthma UK Centre for Applied Research (AUKCAR), we set out to create a supportive, organised environment with the overarching value of 'keeping patients at the heart of everything we do'. The key has been in planning and creating a suitably funded organisational infrastructure with dedicated PPI researchers along with the development of and expectation to abide by an agreed set of norms and values. Specifically, expecting AUKCAR PhD students and early career researchers to engage with PPI has established a working mode that we hope will last. Regular interactions and proactive Patient Leads increase PPI network cohesion.
CONCLUSION: With adaptation, the AUKCAR PPI model can be translated to international contexts.
RECOMMENDATIONS: This is a narrative opinion piece on the design of clinical trials in youth-onset type 2 diabetes prepared by researchers who undertake this type of study in different countries. The review addresses possible ways to enhance trial designs in youth-onset type 2 diabetes to meet regulatory requirements, while minimizing the barriers to patients' participation. The definition of adolescence, recruitment of sufficient patient numbers, increasing flexibility in selection criteria, improving convenience of trial visits, requirements of a control group, possible endpoints, and trial compliance are all considered. The authors recommend allowing extrapolation from adult data, using multiple interventional arms within future trials, broadening inclusion criteria, and focusing on endpoints beyond glucose control, among others, in order to improve the successful completion of more trials in this population.
CONCLUSIONS: Improvements in trial design will enable better recruitment and retention and thereby more evidence for treatment outcomes for youth-onset type 2 diabetes.
OBJECTIVE: The present study tested the effectiveness of an integrated social cognition model in predicting intention to participate in the self-management behaviors in FH patients from seven countries.
METHOD: Consecutive patients in FH clinics from Australia, Hong Kong, Brazil, Malaysia, Taiwan, China, and UK (total N = 726) completed measures of social cognitive beliefs about illness from the common sense model of self-regulation, beliefs about behaviors from the theory of planned behavior, and past behavior for the three self-management behaviors.
RESULTS: Structural equation models indicated that beliefs about behaviors from the theory of planned behavior, namely, attitudes, subjective norms, and perceived behavioral control, were consistent predictors of intention across samples and behaviors. By comparison, effects of beliefs about illness from the common sense model were smaller and trivial in size. Beliefs partially mediated past behavior effects on intention, although indirect effects of past behavior on intention were larger for physical activity relative to taking medication and healthy eating. Model constructs did not fully account for past behavior effects on intentions. Variability in the strength of the beliefs about behaviors was observed across samples and behaviors.
CONCLUSION: Current findings outline the importance of beliefs about behaviors as predictors of FH self-management behaviors. Variability in the relative contribution of the beliefs across samples and behaviors highlights the imperative of identifying sample- and behavior-specific correlates of FH self-management behaviors.
METHODS: The principles of focused ethnography underpinned the study design. Fieldwork took place over six months in one 32-bedded paediatric oncology ward. Twenty-one children, ranging in ages from 7 to 12 years diagnosed with leukaemia, their parents and 19 nurses participated. Data collection consisted of participant observation and semi-structured interview.
RESULTS: Hospitalized children employed different roles of passive or active participants during the communication and decisions about their nursing care. Importantly, children are more likely to become active participants in the communication process when nurses interact directly with them, listening to them and giving them opportunities to ask questions in either the presence or absence of their parents. Equally, children are likely to be more passive participants when nurses do not communicate directly with them, choosing instead to directly interact with the child's parents. This study highlighted that the role of children as active and passive participants is not permanently engaged by individual children, rather their role fluctuates throughout the hospitalization journey. The fluctuations of a child's role are highly dependent on their preferences: how and when they want to be included in the communication and decisions process. Children's roles in communication and decisions are also varied and dependent on their particular contexts. A child's participation in one situation does not consistently reflect their participation with their role in other situations. The ways in which the children participate were oscillated throughout their hospitalization.
CONCLUSIONS: This study provides empirical insight into children's experiences of triadic (child-nurse-parent) interaction during the decisions about their nursing care in paediatric oncological setting. A key recommendation calls for the development of assessment strategies to determine the 'ideal' position children would like to occupy, at any given point in time, throughout their hospitalization.
AIM: To assess the diabetes empowerment scores and its correlated factors among type 2 diabetes patients in a primary care clinic in Malaysia.
METHODS: This is a cross sectional study involving 322 patients with type 2 diabetes mellitus (DM) followed up in a primary care clinic. Systematic sampling method was used for patient recruitment. The Diabetes Empowerment Scale (DES) questionnaire was used to measure patient empowerment. It consists of three domains: (1) Managing the psychosocial aspect of diabetes (9 items); (2) Assessing dissatisfaction and readiness to change (9 items); and (3) Setting and achieving diabetes goal (10 items). A score was considered high if it ranged from 100 to 140. Data analysis was performed using SPSS version 25 and multiple linear regressions was used to identify the predictors of total diabetes empowerment scores.
RESULTS: The median age of the study population was 55 years old. 56% were male and the mean duration of diabetes was 4 years. The total median score of the DES was 110 [interquartile range (IQR) = 10]. The median scores of the three subscales were 40 with (IQR = 4) for "Managing the psychosocial aspect of diabetes"; 36 with (IQR = 3) for "Assessing dissatisfaction and readiness to change"; and 34 with (IQR = 5) for "Setting and achieving diabetes goal". According to multiple linear regressions, factors that had significant correlation with higher empowerment scores among type 2 diabetes patients included an above secondary education level (P < 0.001), diabetes education exposure (P = 0.003), lack of ischemic heart disease (P = 0.017), and lower glycated hemoglobin (HbA1c) levels (P < 0.001).
CONCLUSION: Diabetes empowerment scores were high among type 2 diabetes patients in this study population. Predictors for high empowerment scores included above secondary education level, diabetes education exposure, lack of ischemic heart disease status and lower HbA1c.