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Physicians Caring for Celiac Patients do not Routinely Recommend Screening of First-Degree Family Members.

ABSTRACT: AIM:Screening first-degree relatives of celiac disease (CD) patients offers an opportunity to diagnose CD in a high-risk population.This study aims to determine how frequently CD patients receive a physician-issued recommendation for first-degree relative screening. MATERIALS AND METHODS:A 12-question survey assessing whether CD patients receive a physician recommendation to screen first-degree relatives for CD, and the impact of such a recommendation, was validated with outpatients in a university gastroenterology practice ("University"). The 12-question survey was then distributed online to members of a celiac organization - the National Foundation for Celiac Awareness ("NFCA"). Results were collected over 3 months. Univariate analysis was used to compare cohort means and assess the association between demographic and diagnostic factors and first-degree relative screening recommendations. RESULTS:87 University patients participated in the validation phase. Test-retest reliability of 4 key survey questions was high (Kappa coefficient > 0.80). The main analyses were based on data from 677 NFCA and 82 University respondents. Respondents were predominantly female, with a mean age of 45 years. Significantly more University patients received a recommendation for screening (78% vs 44%, p < 0.001). Ninety-eight percent receiving a screening recommendation (both groups) discussed this with family members, leading to CD screening (University 71%, NFCA 79%) and, ultimately, a CD diagnosis (University 18%, NFCA 27%). CONCLUSIONS:Physicians of CD patients often do not recommend screening first-degree family members. The high clinical impact of this recommendation suggests that greater physician compliance with screening may increase the diagnosis of CD in high risk individuals.

SUBMITTER: Roy A

PROVIDER: S-EPMC5289751 | biostudies-literature | 2015 Dec

REPOSITORIES: biostudies-literature

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Physicians Caring for Celiac Patients do not Routinely Recommend Screening of First-Degree Family Members.

Roy Abhik A Smith Colin C Daskalakis Constantine C Voorhees Kristin K Moleski Stephanie S DiMarino Anthony J AJ Kastenberg David D

Journal of gastroenterology and hepatology research 20151221 12

<h4>Aim</h4>Screening first-degree relatives of celiac disease (CD) patients offers an opportunity to diagnose CD in a high-risk population.This study aims to determine how frequently CD patients receive a physician-issued recommendation for first-degree relative screening.<h4>Materials and methods</h4>A 12-question survey assessing whether CD patients receive a physician recommendation to screen first-degree relatives for CD, and the impact of such a recommendation, was validated with outpatien ...[more]

PMID: 28164022

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Project description:BackgroundDemographic, economic and organisational changes challenge home care services. Increased use of welfare technology and involvement of family members as co-producers of care are political initiatives to meet these challenges. However, these initiatives also involve ethical aspects.MethodThe aim of this qualitative study was to explore family caregivers' experience of involvement and possible ethical aspects of caring for frail older family members receiving home care services supported by welfare technology. This study used a qualitative explorative and descriptive design within a phenomenological-hermeneutical approach. Sixteen interviews with eighteen family caregivers were conducted. The participants were sons, daughters, siblings and spouses of frail older people receiving home care services with the support of welfare technology. Data were analysed using reflexive thematic analysis. The COREQ checklist was used.ResultsThe analysis led to five main themes. First, the family caregivers' experienced caring as meaningful but increasingly demanding concerning the changes in home care services. Second, they experienced a change in relationships, roles, tasks, and responsibilities related to more family involvement and the use of welfare technology. This also challenged their sense of autonomy. However, welfare technology helped them deal with responsibilities, especially safety. The family caregivers requested early involvement, dialogue for care decisions, more cooperation and support from health professionals. Third, the participants experienced that health professionals decided the conditions for co-production without discussion. Their need for information and knowledge about welfare technology were not met. Fourth, the family caregivers felt that the health professionals did not adequately recognise their unique knowledge of the care receiver and did not use this knowledge for customising the welfare technology to the care receiver and their families. Fifth, the family caregivers expressed concern about service and welfare technology inequality in home care services.ConclusionsCo-production in the involvement of family caregivers in care is still not an integral part of home care service. Welfare technology was appreciated, but the family caregivers called for early involvement to ensure successful and safe implementation and use. More attention needs to be given to ethical concerns about the change in relations, transfer of tasks and responsibility, and risk of inequality.

Project description:BACKGROUND:Patient- and family-centered care (PFCC) is increasingly linked to improved communication, care quality, and patient decision making. However, in order to consistently implement and study PFCC, health care systems and researchers need a solid evidentiary base. Most current definitions and models of PFCC are broad and conceptual, and difficult to translate into measurable behaviors and actions. This paper provides a brief overview of all actions that focus group respondents associated with PFCC in ambulatory (outpatient) care settings and then explores actions associated with the concept of "dignity and respect" in greater detail. METHODS:We conducted nine focus groups with patients, family members, and physicians in three metropolitan regions across the United States. Group discussions were transcribed and analyzed using a thematic analysis approach. RESULTS:We identified 14 domains and 47 specific actions that patients, family members, and physicians associate with PFCC. In addition to providing a detailed matrix of these domains and actions, this paper details the actions associated with the "dignity and respect" concept. Key domains identified under "dignity and respect" include: 1) building relationships, 2) providing individualized care, and 3) respecting patients' time. Within these domains we identified specific actions that break down these abstract ideas into explicit and measurable units such as taking time, listening, including family, and minimizing wait times. We identified 9, 6, and 3 specific actions associated, respectively, with building relationships, providing individualized care, and respecting patients' time. CONCLUSIONS:Our work fills a critical gap in our ability to understand and measure PFCC in ambulatory care settings by breaking down abstract concepts about PFCC into specific measurable actions. Our findings can be used to support research on how PFCC affects clinical outcomes and develop innovative tools and policies to support PFCC.

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Physicians Caring for Celiac Patients do not Routinely Recommend Screening of First-Degree Family Members.

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Physicians Caring for Celiac Patients do not Routinely Recommend Screening of First-Degree Family Members.

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