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Addressing unmet needs of patients with chronic diseases: Impact of the VISIT website during consultations

Lee YK, Ng CJ, Low WY

J Eval Clin Pract, 2017 Dec;23(6):1281-1288.
PMID: 28585242 DOI: 10.1111/jep.12777

RATIONALE, AIMS, AND OBJECTIVES: Patient concerns are often neglected in consultations, especially for chronic diseases where patients and providers fall into the routine of chronic disease management in consultations. One strategy to elicit patient concerns has been to ask patients to complete agenda lists before the consultation. This study aimed to explore the impact of a preconsultation agenda website in addressing patients' unmet needs during chronic disease consultations.
METHODS: Patients entered their concerns into a website (Values In Shared Interactions Tool (VISIT)). Doctors accessed this information via the electronic medical records before consultations. Individual in-depth interviews were then conducted with patients and doctors on the website's impact on consultations. Interviews were transcribed verbatim and analysed thematically.
RESULTS: The average age (years) was 65.7 for patients (n = 8) and 35.7 for doctors (n = 7). Patients in the study entered between 1 to 6 items in the website. From postconsultation interviews, we found that the website impacted the consultation in 5 ways: (1) It facilitated patients to communicate their full agenda to doctors; (2) it helped address unmet patient needs as it gave them opportunity to raise other issues besides their chronic condition; (3) it facilitated rapport between doctor and patient; (4) it facilitated doctors to organize their consultation around the concerns the patient had listed; and (5) it disrupted the doctor's usual consultation style if the list of concerns was lengthy.
CONCLUSIONS: Integrating patient concerns into electronic health records helped to facilitate patient-centred consultations. Doctors found this information useful but felt uneasy if the agenda list was too long or too complex. Areas for future studies include training doctors to manage complex agendas and formal evaluation of the VISIT tool.
Study site: Primary care clinic, University Malaya Medical Centre (UMMC), Kuala Lumpur, Malaysia

Matched MeSH terms: Patient Participation/methods*
A voice to be heard: patient and public involvement in health technology assessment and clinical practice guidelines in Malaysia

Kamaruzaman HF, Ku Abd Rahim KN, Mohamed Ghazali IM, Mohd Yusof MA

Int J Technol Assess Health Care, 2021 Mar 22;37:e47.
PMID: 33745482 DOI: 10.1017/S0266462321000118

Patient and public involvement (PPI) in health technology assessment (HTA) is widely promoted to ensure that all health-related decisions are made after taking into consideration the viewpoints of important stakeholders. In Malaysia, patients or their representatives have been involved in the development of HTA and Clinical Practice Guidelines (CPG) since 2009 and their influences have been growing steadily over the years. This paper aimed to describe the journey, achievements, challenges, and future direction of the PPI throughout all stages of the development and implementation of HTA and CPG in Malaysia. Currently, in Malaysia, patients or their representatives are mainly involved during the initial development of HTA and CPG drafts as well as during the internal and external reviews. Additionally, they are also encouraged to be involved during the implementation of HTA and CPG recommendations. Although their involvement in this aspect has slowly increased over time, challenges remain in the form of limited representativeness of selected patients or carers, uncertainty on the level of patient involvement allowed during the HTA/CPG development processes, and limited health literacy, which affect their ability to contribute meaningfully throughout the processes. Continuous improvement in these processes is important as patients or their representatives play a pivotal role in ensuring transparency, accountability, and credibility throughout the HTA/CPG development and decision-making processes.

Matched MeSH terms: Patient Participation*
Fulltext A study to assess the knowledge on self-blood pressure monitoring (SBPM) among hypertensive patients in selected wards of Hospital Lam Wah Ee, Malaysia

Beth, Mini Rani Mary, Shin, Yan Low, Poh, Yoke Chung

International e-Journal of Science, Medicine & Education, 2012;6(2):43-45.
MyJurnal

Self-blood pressure monitoring (SBPM) at home creates greater awareness and patient participation in their treatment prevents hypertensive complications and helps facilitate doctors to make decisions on treatment. A study was conducted to assess the knowledge on self-blood pressure monitoring (SBPM) among hypertensive patients in selected wards of Hospital Lam Wah Ee, Malaysia. The results showed only 21 (32.3%) respondents monitored their blood pressure and 44 (67.7%) did not monitor their blood pressure at home. A total of 12 (18.4%) respondents reported that they monitored their blood pressure at home because they were aware of complications of hypertension. From those respondents who did not monitor blood pressure at home, only 13 (29.5%) respondents planned to carry out SBPM at home in the future. The overall knowledge score results for self-blood pressure monitoring showed that 6 (9.2%) subjects scored 8 and above, 42 (64.6%) scored 5-7, and 17 (26.1%) scored less than 4. The findings from the study will help the nurses understand the level of knowledge on SBPM among hypertensive patients, and include training and health education during hospitalisation reinforcing the importance and the technique of performing SBPM at home. It also helps to identify patients with poor control of blood pressure so that they can be referred to the physician for further treatment.

Matched MeSH terms: Patient Participation
A personalised Healthcare Information Delivery System: pushing customised healthcare information over the WWW

Abidi SS, Goh A

Stud Health Technol Inform, 2000;77:663-7.
PMID: 11187636

Easier and focused access to healthcare information can empower individuals to make 'informed' choices and judgements about personal health maintenance. To achieve 'optimum' patient empowerment, we need to re-evaluate and potentially re-design the processes of healthcare information delivery. Our suggestion is that healthcare information should be personalised according to each individual's healthcare needs and it should be pro-actively delivered, i.e. pushed towards the individual. We present an intelligent Personalised Healthcare Information Delivery Systems that aims to enhance patient empowerment by pro-actively pushing customised, based on one's Electronic Medical Record, health maintenance information via the WWW.

Matched MeSH terms: Patient Participation*
A Multinational Study of Patient Preferences for How Decisions Are Made in Their Care

Pines R, Sheeran N, Jones L, Pearson A, Pamoso AH, Jin YB, et al.

Med Care Res Rev, 2023 Apr;80(2):205-215.
PMID: 35815591 DOI: 10.1177/10775587221108749

Inadequate consideration has been given to patient preferences for patient-centered care (PCC) across countries or cultures in our increasingly global society. We examined what 1,698 participants from the United States, Hong Kong, Philippines, and Australia described as important when making health care decisions. Analysis of frequencies following directed content coding of open-ended questions revealed differences in patients' preferences for doctor behaviors and decision-making considerations across countries. Being well informed by their doctor emerged as most important in decision-making, especially in Hong Kong. Participants in Australia and the United States wanted their doctor to meet their emotional needs. The safety and efficacy of treatments were the most common consideration, especially for Hong Kong. Findings suggest that doctors should focus on information exchange and identifying patient concerns about efficacy, lifestyle impact, cost, and recovery speed. Rather than assuming patients prefer shared decision-making, doctors must assess patient's decision control preferences.

Matched MeSH terms: Patient Participation
Fulltext A 'combined framework' approach to developing a patient decision aid: the PANDAs model

Ng CJ, Mathers N, Bradley A, Colwell B

BMC Health Serv Res, 2014 Oct 24;14:503.
PMID: 25341370 DOI: 10.1186/s12913-014-0503-7

BACKGROUND: There is a lack of practical research frameworks to guide the development of patient decision aids [PtDAs]. This paper described how a PtDA was developed using the International Patient Decision Aids (IPDAS) guideline and UK Medical Research Council (UKMRC) frameworks to support patients when making treatment decisions in type 2 diabetes mellitus.
METHODS: This study used mixed methods to develop a PtDA for use in a UK general practice setting. A 10-member expert panel was convened to guide development and patients and clinicians were also interviewed individually using semi-structured interview guides to identify their decisional needs. Current literature was reviewed systematically to determine the best available evidence. The Ottawa Decision Support Framework was used to guide the presentation of the information and value clarification exercise. An iterative draft-review-revise process by the research team and review panel was conducted until the PtDA reached content and format 'saturation'. The PtDA was then pilot-tested by users in actual consultations to assess its acceptability and feasibility. The IPDAS and UKMRC frameworks were used throughout to inform the development process.
RESULTS: The PANDAs PtDA was developed systematically and iteratively. Patients and clinicians highlighted the needs for information, decisional, emotional and social support, which were incorporated into the PtDA. The literature review identified gaps in high quality evidence and variations in patient outcome reporting. The PtDA comprised five components: background of the treatment options; pros and cons of each treatment option; value clarification exercise; support needs; and readiness to decide.
CONCLUSIONS: This study has demonstrated the feasibility of combining the IPDAS and the UKMRC frameworks for the development and evaluation of a PtDA. Future studies should test this model for developing PtDAs across different decisions and healthcare contexts.

Matched MeSH terms: Patient Participation*
Fulltext "It's Valid and Reliable" Is Not Enough: Critical Appraisal of Reporting of Measures in Trials Evaluating Patient Decision Aids

Sepucha KR, Matlock DD, Wills CE, Ropka M, Joseph-Williams N, Stacey D, et al.

Med Decis Making, 2014 07;34(5):560-6.
PMID: 24713692 DOI: 10.1177/0272989X14528381

BACKGROUND: This review systematically appraises the quality of reporting of measures used in trials to evaluate the effectiveness of patient decision aids (PtDAs) and presents recommendations for minimum reporting standards.
METHODS: We reviewed measures of decision quality and decision process in 86 randomized controlled trials (RCTs) from the 2011 Cochrane Collaboration systematic review of PtDAs. Data on development of the measures, reliability, validity, responsiveness, precision, interpretability, feasibility, and acceptability were independently abstracted by 2 reviewers.
RESULTS: Information from 178 instances of use of measures was abstracted. Very few studies reported data on the performance of measures, with reliability (21%) and validity (16%) being the most common. Studies using new measures were less likely to include information about their psychometric performance. The review was limited to reporting of measures in studies included in the Cochrane review and did not consult prior publications.
CONCLUSIONS: Very little is reported about the development or performance of measures used to evaluate the effectiveness of PtDAs in published trials. Minimum reporting standards are proposed to enable authors to prepare study reports, editors and reviewers to evaluate submitted papers, and readers to appraise published studies.

Matched MeSH terms: Patient Participation/methods*