Conectar
by Sindhu Nila, Eliza Dutta, S. S. Prakash, Sophy Korula, Anu Mary Oommen
Background and objectivesPatient-reported measures of encounters in healthcare settings and consideration of their preferences could provide valuable inputs to improve healthcare quality. Although there are increasing reports of user experiences regarding health care in India in recent times, there is a lack of evidence from Indian healthcare settings on the care provided for patients with chronic diseases.
MethodsWe selected diabetes mellitus and cancer as representatives of two common conditions requiring different care pathways. We conducted a scoping review of studies reporting experiences or preferences of patients/caregivers for these conditions, in PubMed, Global Index Medicus and grey literature, from the year 2000 onwards. Both published and emergent themes were derived from the data and summarised as a narrative synthesis.
ResultsOf 95 included studies (49 diabetes, 46 cancer), 73% (65) were exclusively quantitative surveys, 79% included only patients (75), and 59.5% (44) were conducted in government centres. Studies were concentrated in a few states in India, with the underrepresentation of vulnerable population groups and representative studies. There was a lack of standardised tools and comprehensive approaches for assessing experiences and preferences of patients and caregivers, concerning diabetes and cancers in India. The commonest type of care assessed was therapeutic (74), with 14 cancer studies on diagnosis and nine on palliative care. Repeated visits to crowded centres, drug refill issues, unavailability of specific services in government facilities, and expensive private care characterised diabetes care, while cancer care involved delayed diagnosis and treatment, communication, and pain management issues.
ConclusionsThere is a need for robust approaches and standardised tools to measure responsiveness of the healthcare system to patient needs, across geographical and population subgroups in India. Health system reforms are needed to improve access to high-quality care for treatment and palliation of cancer and management of chronic diseases such as diabetes.
The objective of this study was to explore the outcomes of research engagement (patient engagement, PE) in the context of qualitative research.
We observed engagement in two groups comprised of patients, clinicians and researchers tasked with conducting a qualitative preference exploration project in inflammatory bowel disease. One group was led by a patient research partner (PLG, partner led group) and the other by an academic researcher (RLG, researcher led group). A semistructured guide and a set of critical outcomes of research engagement were used as a framework to ground our analysis.
The study was conducted online.
Patient research partners (n=5), researchers (n=5) and clinicians (n=4) participated in this study.
Transcripts of meetings, descriptive and reflective observation data of engagement during meetings and email correspondence between group members were analysed to identify the outcomes of PE.
Both projects were patient-centred, collaborative, meaningful, rigorous, adaptable, ethical, legitimate, understandable, feasible, timely and sustainable. Patient research partners (PRPs) in both groups wore dual hats as patients and researchers and influenced project decisions wearing both hats. They took on advisory and operational roles. Collaboration seemed easier in the PLG than in the RLG. The RLG PRPs spent more time than their counterparts in the PLG sharing their experience with biologics and helping their group identify a meaningful project question. A formal literature review informed the design, project materials and analysis in the RLG, while the formal review informed the project materials and analysis in the PLG. A PRP in the RLG and the PLG lead leveraged personal connections to facilitate recruitment. The outcomes of both projects were meaningful to all members of the groups.
Our findings show that engagement of PRPs in research has a positive influence on the project design and delivery in the context of qualitative research in both the patient-led and researcher-led group.
Commentary on: Poncin W, Baudet L, Braem F, Reychler G, Duprez F, Liistro G, Belkhir L, Yombi JC, De Greef J. Systems on top of nasal cannula improve oxygen delivery in patients with COVID-19: a randomized controlled trial. J Gen Intern Med 2022;37(5):1226–32. doi: 10.1007/s11606-022-07419-2. Epub 8 Feb 2022.
The adverse consequences of continuous exposure to high concentrations of oxygen must be considered before instituting prolonged oxygen therapy in patients with COVID-19. Hypoxaemia is significant in patients with COVID-19, and isolated arterial oxygen pressure (PaO2) improvement may not necessarily translate into any significant survival benefit nor relieve the distress of breathlessness.
Oxygen therapy is important in COVID-19 management. The low-flow nasal cannula (NC) has some drawbacks. The patient’s peak inspiratory flow rate requirements are not met due to significant leakage around the source. A need to improve oxygen...
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