{"title":"Mapping Users' Experience of a Family History and Genetic Risk Algorithm Tool in Primary Care.","authors":"Špela Miroševič, Kaja Krajc, Zalika Klemenc-Ketiš, Polona Selič-Zupančič","doi":"10.1159/000518086","DOIUrl":null,"url":null,"abstract":"<p><strong>Introduction: </strong>The development of a family history (FH) questionnaire (FHQ) provides an insight into a patient's familiarity of a trait and helps to identify individuals at increased risk of disease. A critical aspect of developing a new tool is exploring users' experience.</p><p><strong>Objective: </strong>The objective of this study was to examine users' experience, obstacles and challenges, and their views and concerns in the applicability of a new tool for determining genetic risk in Slovenia's primary care.</p><p><strong>Methods: </strong>We used a qualitative approach. The participants completed a risk assessment software questionnaire that calculates users' likelihood of developing familial diseases. Audio-taped semi-structured telephone interviews were conducted to evaluate their experience. There were 21 participants, and analyses using the constant comparative method were employed.</p><p><strong>Results: </strong>We identified 3 main themes: obstacles/key issues, suggestions for improvements, and coping. The participants were poorly satisfied with the clarity of instructions, technical usability problems, and issues with the entry of relatives' data. They expressed satisfaction with some of the characteristics of the FHQ (e.g., straightforward and friendly format, easy entry, and comprehension). They suggested simpler language, that the disease risk should be targeted toward the disease, that the FHQ should include patient-specific recommendations, and that it should be part of the electronic medical records. When discussing what would they do with the results of the FHQ, the participants used different coping strategies: active (e.g., seeking information) or passive (e.g., avoidance).</p><p><strong>Discussion/conclusion: </strong>User experience was shown to be a synthesis of obstacles, overcoming them with suggestions for improvements, and exploration of various coping mechanisms that may emerge from dealing with the stressor of \"being at risk.\"</p>","PeriodicalId":49650,"journal":{"name":"Public Health Genomics","volume":null,"pages":null},"PeriodicalIF":1.3000,"publicationDate":"2021-08-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Public Health Genomics","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1159/000518086","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"GENETICS & HEREDITY","Score":null,"Total":0}
引用次数: 0
Abstract
Introduction: The development of a family history (FH) questionnaire (FHQ) provides an insight into a patient's familiarity of a trait and helps to identify individuals at increased risk of disease. A critical aspect of developing a new tool is exploring users' experience.
Objective: The objective of this study was to examine users' experience, obstacles and challenges, and their views and concerns in the applicability of a new tool for determining genetic risk in Slovenia's primary care.
Methods: We used a qualitative approach. The participants completed a risk assessment software questionnaire that calculates users' likelihood of developing familial diseases. Audio-taped semi-structured telephone interviews were conducted to evaluate their experience. There were 21 participants, and analyses using the constant comparative method were employed.
Results: We identified 3 main themes: obstacles/key issues, suggestions for improvements, and coping. The participants were poorly satisfied with the clarity of instructions, technical usability problems, and issues with the entry of relatives' data. They expressed satisfaction with some of the characteristics of the FHQ (e.g., straightforward and friendly format, easy entry, and comprehension). They suggested simpler language, that the disease risk should be targeted toward the disease, that the FHQ should include patient-specific recommendations, and that it should be part of the electronic medical records. When discussing what would they do with the results of the FHQ, the participants used different coping strategies: active (e.g., seeking information) or passive (e.g., avoidance).
Discussion/conclusion: User experience was shown to be a synthesis of obstacles, overcoming them with suggestions for improvements, and exploration of various coping mechanisms that may emerge from dealing with the stressor of "being at risk."
期刊介绍:
''Public Health Genomics'' is the leading international journal focusing on the timely translation of genome-based knowledge and technologies into public health, health policies, and healthcare as a whole. This peer-reviewed journal is a bimonthly forum featuring original papers, reviews, short communications, and policy statements. It is supplemented by topic-specific issues providing a comprehensive, holistic and ''all-inclusive'' picture of the chosen subject. Multidisciplinary in scope, it combines theoretical and empirical work from a range of disciplines, notably public health, molecular and medical sciences, the humanities and social sciences. In so doing, it also takes into account rapid scientific advances from fields such as systems biology, microbiomics, epigenomics or information and communication technologies as well as the hight potential of ''big data'' for public health.