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. 2022 Jul;30(7):795-799.
doi: 10.1038/s41431-022-01074-1. Epub 2022 Mar 1.

Healthcare professionals' perceptions of implementing a decision support intervention for cascade screening for beta-thalassemia in Pakistan

Shenaz Ahmed  1 , Hussain Jafri  2 , Wajeeha Naseer Ahmed  3 , Muhammed Faran  3 , Yasmin Rashid  4 , Yasmin Ehsan  3 , Mushtaq Ahmed  5
Affiliations

Healthcare professionals' perceptions of implementing a decision support intervention for cascade screening for beta-thalassemia in Pakistan

Shenaz Ahmed et al. Eur J Hum Genet. 2022 Jul.

Abstract

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.

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Conflict of interest statement

The authors declare no competing interests.

References

    1. Ansari SH, Shamsi TS, Ashraf M, Farzana T, Bohray M, Perveen K, et al. Molecular epidemiology of β-thalassemia in Pakistan: far reaching implications. Indian J Hum Genet. 2012;18:193–7. doi: 10.4103/0971-6866.100762. - DOI - PMC - PubMed
    1. Black ML, Sinha S, Agarwal S, Colah R, Das R, Bellgard M, et al. A descriptive profile of β-thalassaemia mutations in India, Pakistan and Sri Lanka. J Community Genet. 2010;1:149–57. doi: 10.1007/s12687-010-0026-9. - DOI - PMC - PubMed
    1. Pervaiz R, Faisal F, Serakinci N. Practice of consanguinity and attitudes towards risk in the Pashtun population of Khyber Pakhtunkhwa, Pakistan. J Biosoc Sci. 2018;50:414–20. doi: 10.1017/S0021932017000189. - DOI - PubMed
    1. Ahmed S, Jafri H, Rashid Y, Ehsan Y, Bashir S, Ahmed M, et al. Cascade screening for beta-thalassemia in Pakistan: development, feasibility and acceptability of a decision support intervention for relatives. Eur J Hum Genet. 2022;30:73–80. doi: 10.1038/s41431-021-00918-6. - DOI - PMC - PubMed
    1. Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P, et al. Shared decision making: a model for clinical practice. J Gen Intern Med. 2012;27:1361–7. doi: 10.1007/s11606-012-2077-6. - DOI - PMC - PubMed

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