Dataset Information

Treating Patients As People: What Do Hospital Patients Want Clinicians to Know About Them As a Person?

ABSTRACT: Background:There is little understanding or focus on the patient's personal communicative perspective during their experience of clinical treatment. An exploratory study and a follow-up study were conducted at a large safety net hospital to determine whether and what patients wanted clinicians to know more about them as a person. Study Design:A convenience sample of 230 patients was selected from 9 different clinical units within the hospital for exploratory interviews to determine whether patients wanted their clinical team to know about them as a person. Based on these findings, additional personal preference data of patients were collected from a census sample of 387 patients selected from 2 intensive care unit units and 2 medical-surgical units. Findings:The majority of patients in the exploratory study reported they wanted to tell their doctors/nurses some personal information about themselves, thought doctors/nurses could provide better care to them if they knew more about them as a person, and that communication between themselves and their doctors/nurses would improve if they knew more about them as a person. The follow-up study found that a majority of patients preferred that their clinicians call them by their first name and identified specific personal information they wanted to share with the clinical care team. The data also showed a meaningful number of patients who did not want to share this information with others. This split in patient preferences is an important reminder that being aware of personal preferences of patients does not necessarily mean an invitation to increase intimacy in all clinician-patient communications.

SUBMITTER: Zimmerman DL

PROVIDER: S-EPMC7427369 | biostudies-literature | 2020 Apr

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Treating Patients As People: What Do Hospital Patients Want Clinicians to Know About Them As a Person?

Zimmerman Donald L DL Min Dong-Jun DJ Davis-Collins Angela A DeBlieux Peter P

Journal of patient experience 20190311 2

<h4>Background</h4>There is little understanding or focus on the patient's personal communicative perspective during their experience of clinical treatment. An exploratory study and a follow-up study were conducted at a large safety net hospital to determine whether and what patients wanted clinicians to know more about them as a person.<h4>Study design</h4>A convenience sample of 230 patients was selected from 9 different clinical units within the hospital for exploratory interviews to determin ...[more]

PMID: 32851151

Similar Datasets

Project description:Multiple sclerosis (MS) has a varied and uncertain trajectory. The recent development of analytical processing tools that draw on large longitudinal patient databases facilitates personalised long-term prognosis estimates. This has the potential to improve both shared treatment decision-making and psychological adjustment. However, there is limited research on how people with MS feel about prognosis communication and forecasting. This study investigated the prognosis communication experiences and preferences of people with MS and explored whether clinical, demographic and psychological factors are associated with prognosis information preferences.3175 UK MS Register members (59% of those with active accounts) completed an online survey containing 17 questions about prognosis communication experiences, attitudes and preferences. Participants also completed validated questionnaires measuring coping strategies, tendencies to seek out ('monitor') or avoid ('blunt') information in threatening situations, and MS risk perceptions and reported their clinical and sociodemographic characteristics. Data already held on the MS Register about participants' quality of life, anxiety and depression symptoms and MS impact were obtained and linked to the survey data.53.1% of participants had never discussed long-term prognosis with healthcare professionals. 54.2% lacked clarity about their long-term prognosis. 76% had strong preferences for receiving long-term prognosis information. 92.8% were interested in using tools that generate personalised predictions. Most participants considered prognostication useful for decision-making. Participants were more receptive to receiving prognosis information at later time-points, versus at diagnosis. A comprehensive set of sociodemographic, clinical and psychological variables predicted only 7.9% variance in prognosis information preferences.People with MS have an appetite for individualised long-term prognosis forecasting and their need for information is frequently unmet. Clinical studies deploying and evaluating interventions to support prognostication in MS are now needed. This study indicates suitable contexts and patient preferences for initial trials of long-term prognosis tools in clinical settings.

Project description:To establish the empirical evidence base for the information that participants want to know about medical research and to assess how this relates to current guidance from the National Research Ethics Service (NRES). Medline, Web of Science, Applied Social Sciences Index and Abstracts, Sociological abstracts, Health Management Information Consortium, Cochrane Library, thesis index's, grey literature databases, reference and cited article lists, key journals, Google Scholar and correspondence with expert authors. Original research studies published between 1950 and October 2010 that asked potential participants to indicate how much or what types of information they wanted to be told about a research study or asked them to rate the importance of a specific piece of information were included. Studies were appraised based on the generalisability of results to the UK potential research participant population. A metadata analysis using basic thematic analysis was used to split results from papers into themes based on the sections of information that NRES recommends should be included in a participant information sheet. 14 studies were included. Of the 20 pieces of information that NRES recommend should be included in patient information sheets for research pooled proportions could be calculated for seven themes. Results showed that potential participants wanted to be offered information about result dissemination (91% (95% CI 85% to 95%)), investigator conflicts of interest (48% (95% CI 27% to 69%)), the purpose of the study (76% (95% CI 27% to 100%)), voluntariness (39% (95% CI 2% to 100%)), how long the research would last (61% (95% CI 16% to 97%)), potential benefits (57% (95% CI 7% to 98%)) and confidentiality (44% (95% CI 10% to 82%)). The level of detail participants wanted to know was not explored comprehensively in the studies. There was no empirical evidence to support the level of information provision required by participants on the remaining seven items. There is limited empirical evidence on what potential participants want to know about research. The existing empirical evidence suggests that individuals may have very different needs and a more tailored evidence-based approach may be necessary.

Dataset Information

Treating Patients As People: What Do Hospital Patients Want Clinicians to Know About Them As a Person?

Publications

Treating Patients As People: What Do Hospital Patients Want Clinicians to Know About Them As a Person?

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets