Advancing qualitative rare disease research methodology: a comparison of virtual and in-person focus group formats.
Advancing qualitative rare disease research methodology: a comparison of virtual and in-person focus group formats.
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DOI：
10.1186/s13023-022-02522-3
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发表时间：
2022-09-11
影响因子：
3.7
通讯作者：
Smith, Neil
中科院分区：
文献类型：
--
作者：
Dwyer, Andrew A.;Uveges, Melissa;Dockray, Samantha;Smith, Neil
关键词：
罕见病研究受到阻碍的部分原因是患者在地理上分散。罕见病患者社区因利用互联网了解自己的病情并寻求点对点支持而得到认可。因此，基于网络的技术为许多人克服罕见病研究中的地理障碍提供了希望。定性焦点小组（FGs）是一种广泛使用的方法，用于了解患者和父母/家庭的“生活经历”，未满足的需求对改善罕见病的护理很重要。目前还不清楚网络虚拟游戏是否能与传统的面对面游戏相媲美。我们对罕见疾病患者进行了真人（n = 3）和虚拟（n = 3） fg，以确定虚拟fg是否产生与真人fg相似的结果。三个面对面（n = 33名参与者）和三个虚拟（n = 25名参与者）fg进行了调查，调查了有关基因检测和风险家庭沟通的态度和信念。参与者包括30名男性，18名女性和10名父母/监护人。两名独立调查人员使用密码本确定了节选（有意义的文本部分）和编码主题/子主题。两种FG格式的已识别摘要（n = 530）的编码间一致性为844/875（96.5%）。另外两名研究者审查了编码节选，但没有确定其他主题/子主题——支持跨FG格式的数据饱和。虚拟fg占总摘录的303/530(57.2%)，占所有确定的主题/子主题的957/1721（55.7%）。在虚拟和真人fg的总摘录数（101±7.8 vs. 75.7±18.8,p = 0.26）和主题/子主题（319±6.1 vs. 254.7±103.6,p = 0.34）方面，格式相似。然而，虚拟虚拟游戏有更多的编码摘录，具体涉及敏感/亲密话题，包括“态度和信念”（n = 320 vs. n = 235, p < 0.001），“信息和支持”（n = 184 vs. n = 99, p < 0.001）和“家庭沟通”（n = 208 vs. n = 114, p < 0.001）。与传统的真人fg相比，虚拟fg产生的编码摘录数量相似。虚拟fg似乎支持参与者的相对匿名性，从而导致对高度敏感、亲密话题的更丰富的讨论。研究结果支持在罕见疾病中使用网络技术进行FGs的有效性和方法严谨性。在线版本包含补充资料，可在10.1186/s13023-022-02522-3获得。
Rare disease research is hampered in part by the fact that patients are geographically dispersed. Rare disease patient communities are recognized for their use of the internet to learn about their condition and find peer-to-peer support. As such, web-based technologies offer promise for overcoming geographic barriers in rare disease research for many. Qualitative focus groups (FGs) are a widely used methodology used to understand patients and parents/families ‘lived experience’ and unmet needs is important to improve care for rare diseases. It is unclear if web-enabled (virtual) FGs are comparable to traditional in-person approaches. We conducted in-person (n = 3) and virtual (n = 3) FGs with rare disease patients to determine if virtual FGs produce similar results in-person FGs. Three in-person (n = 33 participants) and three virtual (n = 25 participants) FGs were conducted examining attitudes and beliefs regarding genetic testing and family communication of risk. Participants included 30 males, 18 females, and 10 parents/guardians. Two independent investigators identified excerpts (meaningful sections of text) and coded themes/sub-themes using a codebook. Inter-coder agreement across identified excerpts (n = 530) in both FG formats was 844/875 (96.5%). Two additional investigators reviewed coded excerpts and did not identify additional themes/sub-themes—supporting data saturation across FG formats. Virtual FGs accounted for 303/530 (57.2%) of total excerpts and 957/1721 (55.7%) of all identified themes/sub-themes. Formats were similar in terms of overall number of excerpts (101 ± 7.8 vs. 75.7 ± 18.8, p = 0.26) and themes/sub-themes (319 ± 6.1 vs. 254.7 ± 103.6, p = 0.34) between virtual and in-person FGs. However, virtual FGs had significantly more coded excerpts specifically relating to sensitive/intimate topics including ‘attitudes and beliefs’ (n = 320 vs. n = 235, p < 0.001), ‘information and support’ (n = 184 vs. n = 99, p < 0.001), and ‘family communication’ (n = 208 vs. n = 114, p < 0.001). Virtual FGs yielded similar numbers of coded excerpts compared to traditional in-person FGs. Virtual FGs appear to support the relative anonymity of participants, resulting in richer discussion of highly sensitive, intimate topics. Findings support the validity and methodologic rigor of using web-enabled technologies for conducting FGs in rare diseases. The online version contains supplementary material available at 10.1186/s13023-022-02522-3.
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影响因子：
7.4
作者：
Krischer J;Cronholm PF;Burroughs C;McAlear CA;Borchin R;Easley E;Davis T;Kullman J;Carette S;Khalidi N;Koening C;Langford CA;Monach P;Moreland L;Pagnoux C;Specks U;Sreih AG;Ytterberg S;Merkel PA;Vasculitis Clinical Research Consortium
通讯作者：
Vasculitis Clinical Research Consortium
影响因子：
7.4
作者：
Nicholl H;Tracey C;Begley T;King C;Lynch AM
通讯作者：
Lynch AM
DOI：
10.1038/d41573-022-00019-z
发表时间：
2022-05
期刊：
Nature reviews. Drug discovery
影响因子：
--
作者：
Monaco L;Zanello G;Baynam G;Jonker AH;Julkowska D;Hartman AL;O'Connor D;Wang CM;Wong-Rieger D;Pearce DA
通讯作者：
Pearce DA
影响因子：
3.2
作者：
Dwyer, Andrew A.;Tiemensma, Jitske;Morin, Diane
通讯作者：
Morin, Diane
影响因子：
4.8
作者：
Fontenot, Holly B.;Rosenberger, Joshua G.;Zimet, Gregory
通讯作者：
Zimet, Gregory