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Article: Exploration of clinical and ethical issues in an expanded newborn metabolic screening programme: a qualitative interview study of healthcare professionals in Hong Kong
| Title | Exploration of clinical and ethical issues in an expanded newborn metabolic screening programme: a qualitative interview study of healthcare professionals in Hong Kong 探討擴大初生嬰兒代謝病篩查計劃的臨床和倫理問題：香港醫護人員訪談研究 |
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| Authors | |
| Issue Date | 9-Apr-2024 |
| Publisher | Hong Kong Academy of Medicine Press |
| Citation | Hong Kong Medical Journal, 2024, v. 30 How to Cite? |
| Abstract | Introduction: The Newborn Screening Programme for Inborn Errors of Metabolism (NBSIEM) enables early intervention and prevents premature mortality. Residual dried bloodspots (rDBS) from the heel prick test are a valuable resource for research. However, there is minimal data regarding how stakeholders in Hong Kong view the retention and secondary use of rDBS. This study aimed to explore views of the NBSIEM and the factors associated with retention and secondary use of rDBS among healthcare professionals in Hong Kong. Methods: Between August 2021 and January 2022, semi-structured interviews were conducted with 30 healthcare professionals in obstetrics, paediatrics, and chemical pathology. Key themes were identified through thematic analysis, including views towards the current NBSIEM and the retention and secondary use of rDBS. Results: After implementation of the NBSIEM, participants observed fewer patients with acute decompensation due to undiagnosed inborn errors of metabolism. The most frequently cited clinical utilities were early detection and improved health outcomes. Barriers to rDBS storage and its secondary use included uncertain value and benefits, trust concerns, and consent issues. Conclusion: This study highlighted healthcare professionals’ concerns about the NBSIEM and uncertainties regarding the handling or utilisation of rDBS. Policymakers should consider these concerns when establishing new guidelines. 引言：初生嬰兒代謝病篩查計劃能夠在病徵出現之前檢測異常，及早介入和作出治療，預防嬰兒猝死。在初生嬰兒腳板採集的乾血點樣本是科研重要資源，然而有關本地持分者如何看待儲存及使用乾血點樣本的資料較少。本研究旨在探討香港醫護人員對初生嬰兒代謝病篩查計劃的看法，以及他們對儲存及使用乾血點樣本作科研用途的意見。 方法：2021年8月至2022年1月期間，30名在公私營醫療機構工作的婦產科、兒科和化學病理學科醫護人員獲邀參加半結構性訪談，分別就目前初生嬰兒代謝病篩查計劃和儲存及使用乾血點樣本作科研相關用途發表意見。我們利用主題分析法找出關鍵主題。 結果：在推行初生嬰兒代謝病篩查計劃後，醫護人員觀察到未診斷代謝異常的患者出現急性失代償的情況有所減少。最常被提及的臨床效用是讓醫護人員和家長及早發現疾病和改善健康情況。儲存及使用乾血點樣本作科研用途存有隱憂，包括不確定相關用途對初生嬰兒是否帶來益處，當中亦衍生信任和個人資料收集等問題。 結論：本研究顯示，醫護人員對於初生嬰兒代謝病篩查計劃以及乾血點樣本的處理及使用存在隱憂。政策制定者在訂立新指引時應考慮這些擔憂。 |
| Persistent Identifier | http://hdl.handle.net/10722/342766 |
| ISSN | 2023 Impact Factor: 3.1 2023 SCImago Journal Rankings: 0.261 |
| DC Field | Value | Language |
|---|---|---|
| dc.contributor.author | Ngan, Olivia Miu Yung | - |
| dc.contributor.author | Tam, Ching Janice | - |
| dc.contributor.author | Li, Chi Kong | - |
| dc.date.accessioned | 2024-04-24T02:47:00Z | - |
| dc.date.available | 2024-04-24T02:47:00Z | - |
| dc.date.issued | 2024-04-09 | - |
| dc.identifier.citation | Hong Kong Medical Journal, 2024, v. 30 | - |
| dc.identifier.issn | 1024-2708 | - |
| dc.identifier.uri | http://hdl.handle.net/10722/342766 | - |
| dc.description.abstract | <p><strong>Introduction:</strong> The Newborn Screening Programme for Inborn Errors of Metabolism (NBSIEM) enables early intervention and prevents premature mortality. Residual dried bloodspots (rDBS) from the heel prick test are a valuable resource for research. However, there is minimal data regarding how stakeholders in Hong Kong view the retention and secondary use of rDBS. This study aimed to explore views of the NBSIEM and the factors associated with retention and secondary use of rDBS among healthcare professionals in Hong Kong.</p><p><strong>Methods:</strong> Between August 2021 and January 2022, semi-structured interviews were conducted with 30 healthcare professionals in obstetrics, paediatrics, and chemical pathology. Key themes were identified through thematic analysis, including views towards the current NBSIEM and the retention and secondary use of rDBS.</p><p><strong>Results:</strong> After implementation of the NBSIEM, participants observed fewer patients with acute decompensation due to undiagnosed inborn errors of metabolism. The most frequently cited clinical utilities were early detection and improved health outcomes. Barriers to rDBS storage and its secondary use included uncertain value and benefits, trust concerns, and consent issues.</p><p><strong>Conclusion:</strong> This study highlighted healthcare professionals’ concerns about the NBSIEM and uncertainties regarding the handling or utilisation of rDBS. Policymakers should consider these concerns when establishing new guidelines.<br></p> | - |
| dc.description.abstract | 引言：初生嬰兒代謝病篩查計劃能夠在病徵出現之前檢測異常，及早介入和作出治療，預防嬰兒猝死。在初生嬰兒腳板採集的乾血點樣本是科研重要資源，然而有關本地持分者如何看待儲存及使用乾血點樣本的資料較少。本研究旨在探討香港醫護人員對初生嬰兒代謝病篩查計劃的看法，以及他們對儲存及使用乾血點樣本作科研用途的意見。 方法：2021年8月至2022年1月期間，30名在公私營醫療機構工作的婦產科、兒科和化學病理學科醫護人員獲邀參加半結構性訪談，分別就目前初生嬰兒代謝病篩查計劃和儲存及使用乾血點樣本作科研相關用途發表意見。我們利用主題分析法找出關鍵主題。 結果：在推行初生嬰兒代謝病篩查計劃後，醫護人員觀察到未診斷代謝異常的患者出現急性失代償的情況有所減少。最常被提及的臨床效用是讓醫護人員和家長及早發現疾病和改善健康情況。儲存及使用乾血點樣本作科研用途存有隱憂，包括不確定相關用途對初生嬰兒是否帶來益處，當中亦衍生信任和個人資料收集等問題。 結論：本研究顯示，醫護人員對於初生嬰兒代謝病篩查計劃以及乾血點樣本的處理及使用存在隱憂。政策制定者在訂立新指引時應考慮這些擔憂。 | - |
| dc.language | eng | - |
| dc.publisher | Hong Kong Academy of Medicine Press | - |
| dc.relation.ispartof | Hong Kong Medical Journal | - |
| dc.rights | This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. | - |
| dc.title | Exploration of clinical and ethical issues in an expanded newborn metabolic screening programme: a qualitative interview study of healthcare professionals in Hong Kong | - |
| dc.title | 探討擴大初生嬰兒代謝病篩查計劃的臨床和倫理問題：香港醫護人員訪談研究 | - |
| dc.type | Article | - |
| dc.identifier.doi | 10.12809/hkmj2210234 | - |
| dc.identifier.volume | 30 | - |
| dc.identifier.eissn | 2226-8707 | - |
| dc.identifier.issnl | 1024-2708 | - |