scholarly journals How Returning Aggregate Research Results Impacts Interest in Research Engagement and Planned Actions Relevant to Health Care Decision Making: Cohort Study (Preprint)

2018 ◽  
Author(s):  
Elissa R Weitzman ◽  
Kara M Magane ◽  
Lauren E Wisk
Keyword(s):  
Information Seeking ◽  
Research Participation ◽  
Future Research ◽  
Patient Centered ◽  
Research Results ◽  
Research Engagement ◽  
Patient Reported ◽  
Virtuous Cycle ◽  
Interest In Research ◽  
Reaction Patterns

BACKGROUND Collection of patient-reported outcomes measures (PROs) may augment clinical data and inform health research, improving care, yet approaches to sustaining interest among patient cohorts in research participation are needed. One approach may involve returning aggregate research results (ARRs), which may help patients contextualize personal experiences, prompt conversations with providers or family, and encourage information seeking. This model has been demonstrated for Web-based patient-centered registries. Studies with clinical cohorts may further elucidate the model, its impacts on interest in research participation and planned actions, and potential for participants to experience this as helpful or harmful—gap areas. OBJECTIVE We sought to investigate the impacts of returning ARRs comprising summaries of PROs and clinical metrics to parents of children with rheumatic disease, assessing interest in future research participation among parents who viewed ARRs and plans for acting on returned information. Further, we sought to investigate reactions to viewing ARRs and how these reactions impacted planned actions. METHODS Clinical and PRO data were obtained about children in a national clinical disease registry, summarized, and processed into annotated infographics, comprising ARRs for children’s parents. Parents who viewed ARRs (n=111) were surveyed about the information’s perceived value and their reactions. Reaction patterns were summarized using principal components analysis (PCA), and associations among reaction patterns and interest in research participation and planned actions were estimated using multivariate logistic regression. RESULTS Parental endorsement of the value of ARRs for understanding their child’s condition and making care decisions was high (across 10 topics for which ARRs were shared, 42.2%-77.3% of the parents reported information was “very valuable”). Most (58/111, 52.3%) parents reported being more interested in participating in research after viewing ARRs, with the remainder reporting that their interest levels were unchanged. Reactions to viewing ARRs reflected experiencing validation/affirmation and information burden based on PCA. Reactions were not associated with child demographic or clinical characteristics and PROs, except that parents from households with less education reported greater information burden than those from more educated households (P=.007). In adjusted models, parents with higher validation/affirmation scores had increased odds of reporting heightened interest in research participation (adjusted odds ratio [AOR] 1.97, 95% CI 1.18-3.30), while higher information burden scores were associated with decreased odds of planned discussions with their child (AOR 0.59, 95% CI 0.36-0.95) and increased odds of planned discussions with providers (AOR 1.75, 95% CI 1.02-3.00). CONCLUSIONS Returning ARRs may foster a “virtuous cycle” of research engagement, especially where ARRs are experienced favorably and affect plans to share and discuss ARRs in support of a child’s chronic disease care and treatment. Reactions to ARRs vary with education level, underscoring the need for attention to equity for this model.

scholarly journals Prevalence of Low-Value Care and Its Associations with Patient-Centered Outcomes in Dementia

2021 ◽  
pp. 1-13
Author(s):  
Moritz Platen ◽  
Steffen Flea ◽  
Anika Rädke ◽  
Diana Wucherer ◽  
Jochen René Thyrian ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Models Of Care ◽  
Adverse Outcomes ◽  
Future Research ◽  
Patient Centered ◽  
Treatment Pathways ◽  
Patient Reported ◽  
Evidence Based Treatments ◽  
Related Quality

Background: Low-value care (LvC) is defined as care unlikely to provide a benefit to the patient regarding the patient’s preferences, potential harms, costs, or available alternatives. Avoiding LvC and promoting recommended evidence-based treatments, referred to as high-value care (HvC), could improve patient-reported outcomes for people living with dementia (PwD). Objective: This study aims to determine the prevalence of LvC and HvC in dementia and the associations of LvC and HvC with patients’ quality of life and hospitalization. Methods: The analysis was based on data of the DelpHi trial and included 516 PwD. Dementia-specific guidelines, the “Choosing Wisely” campaign and the PRISCUS list were used to indicate LvC and HvC treatments, resulting in 347 LvC and HvC related recommendations. Of these, 77 recommendations (51 for LvC, 26 for HvC) were measured within the DelpHi-trial and finally used for this analysis. The association of LvC and HvC treatments with PwD health-related quality of life (HRQoL) and hospitalization was assessed using multiple regression models. Results: LvC was highly prevalent in PwD (31%). PwD receiving LvC had a significantly lower quality of life (b = –0.07; 95%CI –0.14––0.01) and were significantly more likely to be hospitalized (OR = 2.06; 95%CI 1.26–3.39). Different HvC treatments were associated with both positive and negative changes in HRQoL. Conclusion: LvC could cause adverse outcomes and should be identified as early as possible and tried to be replaced. Future research should examine innovative models of care or treatment pathways supporting the identification and replacement of LvC in dementia.

The Cancer Survivorship Journey: Models of Care, Disparities, Barriers, and Future Directions

2016 ◽  
pp. 231-239 ◽  
Author(s):  
Michael T. Halpern ◽  
Mary S. McCabe ◽  
Mary Ann Burg
Keyword(s):  
Insurance Coverage ◽  
Evidence Base ◽  
Models Of Care ◽  
Future Research ◽  
Survivorship Care ◽  
Patient Centered ◽  
High Quality ◽  
Patient Reported ◽  
Centered Care ◽  
Policies And Programs

Although the number of long-term cancer survivors has increased substantially over past years, the journey of survivorship does not always include high-quality, patient-centered care. A variety of survivorship care models have evolved based on who provides this care, the survivor population, the site of care, and/or the capacity for delivering specific services. Other areas of survivorship care being explored include how long follow-up care is needed, application of a risk-based approach to survivorship care, and the role of the survivor in his or her own recovery. However, there is little evidence indicating whether any models improve clinical or patient-reported outcomes. A newer focus in survivorship care has included assessment of potential disparities; the sociodemographic characteristics of population subgroups associated with barriers to receiving high-quality cancer treatment may also affect the survivorship period. Developing policies and programs to address disparities in survivorship care is not simple, and examining how financial hardship affects cancer outcomes, reducing economic barriers to care, and increasing incorporation of patient-centered strategies may be important components. Here too, there is little evidence regarding the best strategies to address these disparities. Barriers to providing high-quality, patient-centered survivorship care include lack of evidence, lack of a trained survivorship workforce, lack of reimbursement structures/insurance coverage, and lack of a health care system that reduces fragmented care. Future research needs to focus on developing a survivorship care evidence base, exploring strategies to facilitate provision of survivorship care, and disseminating best survivorship care practices to diverse and international audiences.

scholarly journals A Model of Doctor-Patient Communication and Information Seeking a Study Among Trainee or Junior Doctors in Malaysian Hospital

2021 ◽  
Vol 13 (3) ◽  
Author(s):  
Hashim Fauzy Yaacob ◽  
Zaidatul Nadiah Abu Yazid
Keyword(s):  
Information Seeking ◽  
Meta Analysis ◽  
Communication Style ◽  
Communication Styles ◽  
Future Research ◽  
Junior Doctors ◽  
Patient Centered ◽  
Doctor Patient Communication ◽  
Patient Interview ◽  
High Level

The purpose of this study is to evaluate the doctors-patients communication style and their information seeking practiced among doctors under training or junior doctors in Malaysian hospital. Two types of communication styles evaluated are doctor centered and patient centered communication. Meanwhile, elements of information seeking practice evaluated are exploration of the reason for encounter, history taking, concrete solutions, structuring the interview, interpersonal skills and communicative skills. These six elements were categorized into interview skills and process skills. This information seeking skills have been derived from meta-analysis conducted by Stewart and Roter (1989). We combined the doctors-patients communication style and information seeking practice to develop a model based on four quadrants namely doctors-interview, doctors-process, patient-interview and patient-process. The subjects for this research are doctors under training or junior doctors in Malaysia. This explorative research distributed a set of questionnaires in order to collect data for analysis. The result show that the doctors under training or junior doctors tend to practice doctor-centered styles compare to patient-centered. Meanwhile, most of them demonstrate all the information seeking practice at a high level. Based on four quadrants developed by researcher, research shows that the doctors mostly categorized in doctor-centered communication style and interview information-seeking skills. We suggested that doctors should be more patient-oriented rather than doctor oriented. We also suggested the model that we developed can be used as a model of communication pattern of the doctors and can be used for future research.

Projecting a European Diploma in Psychology

2002 ◽  
Vol 7 (3) ◽  
pp. 221-224 ◽  
Author(s):  
Bernhard Wilpert
Keyword(s):  
Research Process ◽  
Project Team ◽  
Future Research ◽  
Research Results ◽  
External Constraints ◽  
Internal Procedures ◽  
The Eu

The paper presents an inside evaluation of the EuroPsyT project, funded by the EU Leonardo Program in 1999-2001. While standard research usually neglects to reflect on the internal and external constraints and opportunities under which research results are achieved, the paper stresses exactly those aspects: starting from a brief description of the overall objectives of the 11 countries project, the paper proceeds to describe the macro-context and the internal strengths and weaknesses of the project team, the internal procedures of cooperation,. and obstacles encountered during the research process. It winds up in noting some of the project's achievements and with a look towards future research.

scholarly journals Limited evidence for return to sport testing after ACL reconstruction in children and adolescents under 16 years: a scoping review

2020 ◽  
Vol 7 (1) ◽  
Author(s):  
Martijn Dietvorst ◽  
Maarten H. Brzoskowski ◽  
Marieke van der Steen ◽  
Eugenie Delvaux ◽  
Rob P. A. Janssen ◽  
...  
Keyword(s):  
Children And Adolescents ◽  
Acl Reconstruction ◽  
Scoping Review ◽  
Return To Sport ◽  
Test Battery ◽  
Ligament Injury ◽  
Future Research ◽  
Movement Quality ◽  
Patient Reported ◽  
Strength Tests

Abstract Specific return to sport criteria for children and adolescents after anterior cruciate ligament injury and reconstruction are unknown. The aim of this scoping review is to provide an overview of current tests regarding return to sport for children and adolescents. This scoping review was performed according to the PRISMA statement. A systematic search was performed on PubMed and EMBASE. The inclusion criteria were diagnostic and prognostic studies evaluating tests regarding return to sport after ACL injury and reconstruction in children/adolescents (age < 18 years). Twenty-six studies were included, of which 22 studies evaluated tests in the age category of 16 to 18 years. All studies evaluated tests after ACL reconstruction, no studies have been conducted in non-operative patients. Strength tests, movement quality and patient reported outcomes measures (PROMs) are investigated most frequently. Clearance for return to sport should be based on a test battery including strength tests, movement quality during sport-specific tasks and (paediatric) patient reported outcome measures. There are no recommendations on which specific tests regarding quantity and quality of movement should be used. Future research should aim at at developing and validating a test battery including movement quality and neuromotor control in a sport-specific context for both younger children and adolescents after both operative and non-operative treatment.

scholarly journals Hispanic Perspectives on Parkinson’s Disease Care and Research Participation

2021 ◽  
pp. 1-11
Author(s):  
Lisa Damron ◽  
Irene Litvan ◽  
Ece Bayram ◽  
Sarah Berk ◽  
Bernadette Siddiqi ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Native Language ◽  
Research Participation ◽  
Ongoing Research ◽  
Research Recruitment ◽  
Research Opportunities ◽  
Research Engagement ◽  
Wide Range ◽  
Tertiary Center

Background: Hispanics are under-represented in Parkinson’s disease (PD) research despite the importance of diversity for results to apply to a wide range of patients. Objective: To investigate the perspective of Hispanic persons with Parkinson disease (PWP) regarding awareness, interest, and barriers to participation in research. Methods: We developed and administered a survey and qualitative interview in English and Spanish. For the survey, 62 Hispanic and 38 non-Hispanic PWP linked to a tertiary center were recruited in Arizona. For interviews, 20 Hispanic PWP, 20 caregivers, and six physicians providing service to Hispanic PWP in the community were recruited in California. Survey responses of Hispanic and non-Hispanic PWP were compared. Major survey themes were identified by applying grounded theory and open coding. Results: The survey found roughly half (Q1 54%, Q2 55%) of Hispanic PWP linked to a tertiary center knew about research; there was unawareness among community Hispanic PWP. Most preferred having physician recommendations for research participation and were willing to participate. Hispanics preferred teams who speak their native language and include family. Research engagement, PD knowledge, role of family, living with PD, PD care, pre-diagnosis/diagnosis emerged as themes from the interview. Conclusion: Barriers exist for participation of Hispanic PWP in research, primarily lack of awareness of PD research opportunities. Educating physicians of the need to encourage research participation of Hispanic PWP can address this. Physicians need to be aware of ongoing research and should not assume PWP disinterest. Including family members and providing research opportunities in their native language can increase research recruitment.

scholarly journals Patient-Reported Cognitive Outcomes Following Cardiac Surgery: A Descriptive Review

2021 ◽  
Vol 8 ◽  
pp. 237437352198925
Author(s):  
Amanda Robinson ◽  
Edith Pituskin ◽  
Colleen M Norris
Keyword(s):  
Cardiac Surgery ◽  
Cognitive Function ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cognitive Outcomes ◽  
Patient Centered ◽  
Cognitive Changes ◽  
Practice Nurses ◽  
Patient Reported ◽  
Related Quality

A descriptive review was conducted to evaluate the evidence of cognitive patient-reported outcome measures (PROMs) following cardiac surgery. The search of electronic databases resulted in 400 unique manuscripts. Nine studies met the criteria to be part of the final review. Results of the review suggest that there are few validated PROMs that assess cognitive function in the cardiac surgical population. Furthermore, PROMs have not been used to assess overall cognitive function following cardiac surgery within the past decade. However, one domain of cognitive function—memory—was described, with up to half of patients reporting a decline postoperatively. Perceived changes in cognitive function may impact health-related quality of life and a patient’s overall view of the success of their surgery. Early identification of cognitive changes measured with PROMs may encourage earlier intervention and improve patient-centered care. In clinical practice, nurses may be in the best position to administer PROMs preoperatively and postoperatively.

Synthetic Environments for Investigating Collaborative Information Seeking: An Application in Emergency Restoration of Critical Infrastructures

2015 ◽  
Vol 12 (3) ◽  
Author(s):  
David Mendonça ◽  
William A. Wallace ◽  
Barbara Cutler ◽  
James Brooks
Keyword(s):  
Information Seeking ◽  
Large Scale ◽  
Critical Infrastructure ◽  
Future Research ◽  
Critical Infrastructures ◽  
Close Collaboration ◽  
Number Of Factors ◽  
Computer Based ◽  
Collaborative Information Seeking ◽  
Post Disaster

AbstractLarge-scale disasters can produce profound disruptions in the fabric of interdependent critical infrastructure systems such as water, telecommunications and electric power. The work of post-disaster infrastructure restoration typically requires information sharing and close collaboration across these sectors; yet – due to a number of factors – the means to investigate decision making phenomena associated with these activities are limited. This paper motivates and describes the design and implementation of a computer-based synthetic environment for investigating collaborative information seeking in the performance of a (simulated) infrastructure restoration task. The main contributions of this work are twofold. First, it develops a set of theoretically grounded measures of collaborative information seeking processes and embeds them within a computer-based system. Second, it suggests how these data may be organized and modeled to yield insights into information seeking processes in the performance of a complex, collaborative task. The paper concludes with a discussion of implications of this work for practice and for future research.

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