Cascade screening for beta-thalassemia in Pakistan: development, feasibility and acceptability of a decision support intervention for relatives.
Cascade screening for beta-thalassemia in Pakistan: development, feasibility and acceptability of a decision support intervention for relatives.
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巴基斯坦β-地中海贫血的级联筛查：亲属决策支持干预措施的开发、可行性和可接受性。
DOI：
10.1038/s41431-021-00918-6
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发表时间：
2022-01
期刊：
影响因子：
--
通讯作者：
Ahmed M
中科院分区：
文献类型：
--
作者：
Ahmed S;Jafri H;Rashid Y;Ehsan Y;Bashir S;Ahmed M
巴基斯坦政府资助的“旁遮普省地中海贫血症预防项目”包括对患有重型贝塔地中海贫血症儿童的亲生亲属进行级联筛查(β-TM)。然而，级联筛查的摄取率很低。本文介绍了(I)基于纸质的“亲属决策支持干预”(Desire)的开发，以使PTPP外勤人员能够促进关于载体测试的知情决策，以及(Ii)对Desire的可行性和可接受性的评估。干预措施是使用国际患者决策辅助标准、质量标准和渥太华决策支持框架制定的。在六个城市进行了12个焦点小组(2020年9月和10月)，以探讨卫生保健专业人员(HCP)和患有β-TM儿童的亲属的意见。参加焦点小组的有117人(60名初级保健方案和57名亲属)。主题分析表明，这种愿望被认为是可以接受的，以支持亲属做出关于级联筛查的知情决定，并有可能在临床实践中使用。建议改变一些词语、结构和增加有关携带者检测与近亲婚姻的关系的信息，将使这一愿望得到进一步发展。与会者普遍欢迎这一愿望；然而，他们强调认为需要使用更具指导性的语言，因此显示出对指导性遗传咨询的文化偏好。这些发现突显了研究人员面临的挑战，他们使用西方的理论、框架、政策和临床指南来开发决策支持干预措施，以便在更广泛的全球范围内实施。需要未来的研究来评估这种愿望在日常实践中的使用情况，以及它是否使亲属能够做出知情的决定。
The government-funded ‘Punjab Thalassaemia Prevention Project’ (PTPP) in Pakistan includes cascade screening for biological relatives of children with beta-Thalassaemia Major (β-TM). However, there is low uptake of cascade screening. This paper presents the (i) development of a paper-based ‘decision support intervention for relatives’ (DeSIRe) to enable PTPP Field Officers to facilitate informed decision making about carrier testing, and (ii) assessment of the feasibility and acceptability of the DeSIRe. The intervention was developed using the International Patient Decision Aids Standards quality criteria and Ottawa Decision Support Framework. Twelve focus groups were conducted (September and October 2020) to explore the views of healthcare professionals (HCPs) and relatives of children with β-TM, in six cities. The focus groups were attended by 117 participants (60 HCPs and 57 relatives). Thematic analysis showed that the DeSIRe was considered acceptable for supporting relatives to make informed decisions about cascade screening, and potentially feasible for use in clinical practice. Suggestions for changing some words, the structure and adding information about how carrier testing relates to consanguineous marriages will enable further development of the DeSIRe. Participants generally welcomed the DeSIRe; however, they highlighted the perceived need to use more directive language, hence showed a cultural preference for directive genetic counselling. The findings highlight challenges for researchers using western theories, frameworks, policies and clinical guidelines to develop decision support interventions for implementation more globally. Future research is needed to evaluate the use of the DeSIRe in routine practice and whether it enables relatives to make informed decisions.
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