Birmingham City University, Birmingham, UK.
Birmingham Women's and Children's NHS Foundation Trust, Birmingham, UK.
Orphanet J Rare Dis. 2024 Aug 20;19(1):303. doi: 10.1186/s13023-024-03295-7.
In phenylketonuria (PKU), attending multidisciplinary clinic reviews is an important aspect of life-long care. Since the COVID-19 pandemic, video and telephone clinics are used as alternative methods for people with PKU to have contact with their care team. There is limited research concerning patient preference, experience and perceptions of alternative types of clinic review. Individuals from the UK with PKU and their caregivers were invited to complete an online questionnaire, hosted on the National Society for PKU (NSPKU) website and social media platform.
Data was available from 203 respondents. Forty one per cent of respondents (n = 49/119) preferred in-person clinics; 41% (n = 49) a hybrid of in-person, video and telephone clinics; 9% (n = 11) video clinics only, 6% (n = 7) telephone only and 3% (n = 3) were unsure. The main respondent obstacles to in-person clinics were costs, travel and time, but this was balanced by the benefits of a physical examination and better patient engagement/motivation. Twenty one per cent (n = 36/169) of respondents were uncomfortable with the number of healthcare professionals (HCPs) in a clinic room. Patients were less likely to consult with a doctor on video (64%, n = 91/143) or phone (50%, n = 59/119) reviews compared to in-person (80%, n = 146/183). Issues with video and telephone reviews included the shorter time length of review, distractions, technical issues and poor patient engagement.
Online video and telephone clinic platforms were effective in overcoming the challenging circumstances in management, monitoring and treatment of patients with PKU during the COVID-19 pandemic. However, in-person clinics remain the preferred respondent option. It is important that HCPs are flexible, enabling people with PKU a choice of clinic options according to their individual clinical need and circumstances.
在苯丙酮尿症（PKU）中，参加多学科诊所复查是终身护理的重要方面。自 COVID-19 大流行以来，视频和电话诊所已被用作 PKU 患者与护理团队联系的替代方法。关于替代类型的诊所复查，患者的偏好、体验和看法的研究有限。来自英国的 PKU 患者及其照顾者受邀在全国 PKU 协会（NSPKU）网站和社交媒体平台上完成在线问卷调查。
从 203 名应答者中获得了数据。41%的应答者（n=49/119）更喜欢面对面诊所；41%（n=49）喜欢面对面、视频和电话诊所相结合；9%（n=11）只喜欢视频诊所，6%（n=7）只喜欢电话诊所，3%（n=3）不确定。面对面诊所的主要应答者障碍是费用、旅行和时间，但这与体检和更好的患者参与/激励相平衡。21%（n=36/169）的应答者对诊所房间内的医疗保健专业人员（HCPs）数量感到不舒服。与面对面（n=146/183）相比，患者在视频（n=91/143）或电话（n=59/119）复查中更不可能咨询医生。视频和电话复查存在的问题包括审查时间缩短、干扰、技术问题和患者参与度低。
在 COVID-19 大流行期间，在线视频和电话诊所平台在 PKU 患者的管理、监测和治疗方面克服了具有挑战性的情况，是有效的。然而，面对面诊所仍然是应答者的首选。重要的是，HCPs 应具有灵活性，根据患者的个体临床需求和情况，为 PKU 患者提供选择诊所的机会。
