Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
Thalassaemia Society Pakistan, Fatima Jinnah Medical University, Lahore, Pakistan.
Eur J Hum Genet. 2022 Jul;30(7):795-799. doi: 10.1038/s41431-022-01074-1. Epub 2022 Mar 1.
Counselling relatives of individuals with βeta-Thalassaemia Major (β-TM) about cascade screening is the role of field officers (FOs) in the Punjab Thalassaemia Prevention Project (PTPP). This paper presents FOs' views about using a 'decision support intervention for relatives' (DeSIRe) to facilitate informed decision making, and their perception of its implementation and sustainability. Semi-structured qualitative interviews were conducted with nine FOs (June to July 2021) in seven cities in the Punjab province (Lahore, Sheikhupura, Nankana Sahab, Kasur, Gujranwala, Multan, and Faisalabad) following its use in routine clinical practice. Thematic analysis shows that the FOs were overwhelmingly supportive of the DeSIRe, expressing enthusiasm and identifying benefits of its use, both for their own practice and for relatives. They supported the aim of the intervention to enable them to facilitate relatives' decision-making about cascade screening, and advocated its use more widely within the PTPP and the other provinces of Pakistan. Overall, the DeSIRe was valued by the FOs for use in routine practice. These findings suggest the DeSIRe is highly likely to be implemented by healthcare professionals more widely in the PTPP and, therefore, is worth evaluating to prove its efficacy. Further research is needed on the extent to which the DeSIRe could be adapted for use by other healthcare professionals with similar responsibilities in the other provinces of Pakistan, and in other low-middle income countries.
为β-地中海贫血症(β-TM)患者的亲属提供有关级联筛查的咨询是旁遮普省地中海贫血症预防项目(PTPP)现场工作人员(FO)的职责。本文介绍了 FO 们对使用“亲属决策支持干预(DeSIRe)”来促进知情决策的看法,以及他们对其实施和可持续性的看法。在 DeSIRe 常规临床实践中,对来自旁遮普省七个城市(拉合尔、谢赫布扎伊、南卡纳萨巴卜、卡苏尔、古吉兰瓦拉、木尔坦和费萨拉巴德)的 9 名 FO(2021 年 6 月至 7 月)进行了半结构化定性访谈。主题分析表明,FO 们对 DeSIRe 表示了压倒性的支持,他们表达了对该干预措施的热情,并认为其使用对他们自己的实践和亲属都有好处。他们支持该干预措施的目的,使他们能够促进亲属对级联筛查的决策,并倡导在 PTPP 和巴基斯坦其他省份更广泛地使用该干预措施。总的来说,FO 们非常重视 DeSIRe 在常规实践中的使用。这些发现表明,DeSIRe 很可能在 PTPP 中得到医疗保健专业人员更广泛的实施,因此值得评估以证明其疗效。还需要进一步研究 DeSIRe 在多大程度上可以适应巴基斯坦其他省份具有类似责任的其他医疗保健专业人员使用,以及在其他中低收入国家使用。