Althobiani Malik A, Shuttleworth Rebecca, Conway John, Dainton Jonathan, Duckworth Anna, Da Ponte Ana Jorge, Mandizha Jessica, Lanario Joseph W, Gibbons Michael A, Lines Sarah, Scotton Chris J, Hurst John R, Porter Joanna C, Russell Anne-Marie
Department of Medicine, University College London, London, United Kingdom.
Respiratory Medicine, Royal Devon University Healthcare NHS Foundation Trust, Exeter, United Kingdom.
PLOS Digit Health. 2024 Jan 8;3(1):e0000318. doi: 10.1371/journal.pdig.0000318. eCollection 2024 Jan.
Patients diagnosed with Interstitial Lung Diseases (ILD) use devices to self-monitor their health and well-being. Little is known about the range of devices, selection, frequency and terms of use and overall utility. We sought to quantify patients' usage and experiences with home digital devices, and further evaluate their perceived utility and barriers to adaptation.
A team of expert clinicians and patient partners interested in self-management approaches designed a 48-question cross-sectional electronic survey; specifically targeted at individuals diagnosed with ILD. The survey was critically appraised by the interdisciplinary self-management group at Royal Devon University Hospitals NHS Foundation Trust during a 6-month validation process. The survey was open for participation between September 2021 and December 2022, and responses were collected anonymously. Data were analysed descriptively for quantitative aspects and through thematic analysis for qualitative input.
104 patients accessed the survey and 89/104 (86%) reported a diagnosis of lung fibrosis, including 46/89 (52%) idiopathic pulmonary fibrosis (IPF) with 57/89 (64%) of participants diagnosed >3 years and 59/89 (66%) female. 52/65(80%) were in the UK; 33/65 (51%) reported severe breathlessness medical research council MRC grade 3-4 and 32/65 (49%) disclosed co-morbid arthritis or joint problems. Of these, 18/83 (22%) used a hand- held spirometer, with only 6/17 (35%) advised on how to interpret the readings. Pulse oximetry devices were the most frequently used device by 35/71 (49%) and 20/64 (31%) measured their saturations more than once daily. 29/63 (46%) of respondents reported home-monitoring brought reassurance; of these, for 25/63 (40%) a feeling of control. 10/57 (18%) felt it had a negative effect, citing fluctuating readings as causing stress and 'paranoia'. The most likely help-seeking triggers were worsening breathlessness 53/65 (82%) and low oxygen saturation 43/65 (66%). Nurse specialists were the most frequent source of help 24/63 (38%). Conclusion: Patients can learn appropriate technical skills, yet perceptions of home-monitoring are variable; targeted assessment and tailored support is likely to be beneficial.
被诊断患有间质性肺疾病（ILD）的患者使用设备自我监测其健康状况。关于设备的种类、选择、使用频率和使用期限以及整体效用，我们了解得很少。我们试图量化患者对家用数字设备的使用情况和体验，并进一步评估他们所感知到的效用以及适应过程中的障碍。
一组对自我管理方法感兴趣的专家临床医生和患者合作伙伴设计了一项包含48个问题的横断面电子调查问卷；该问卷专门针对被诊断患有ILD的个体。在为期6个月的验证过程中，皇家德文郡大学医院国民保健服务基金会信托基金的跨学科自我管理小组对该调查问卷进行了严格评估。该调查于2021年9月至2022年12月开放参与，回复是匿名收集的。对数据的定量方面进行描述性分析，对定性内容进行主题分析。
104名患者参与了该调查，89/104（86%）报告诊断为肺纤维化，其中46/89（52%）为特发性肺纤维化（IPF），57/89（64%）的参与者诊断时间超过3年，59/89（66%）为女性。52/65（80%）在英国；33/65（51%）报告有严重呼吸困难，医学研究理事会（MRC）分级为3 - 4级，32/65（49%）披露有合并症关节炎或关节问题。其中，18/83（22%）使用手持式肺活量计，只有6/17（35%）得到了关于如何解读读数的建议。脉搏血氧饱和度测定仪是最常用的设备，35/71（49%）使用该设备，20/64（31%）每天测量饱和度超过一次。29/63（46%）的受访者表示家庭监测带来了安心感；其中，25/63（40%）有掌控感。10/57（18%）觉得它有负面影响，称读数波动导致压力和“偏执”。最可能促使寻求帮助的触发因素是呼吸困难加重53/65（82%）和低氧饱和度43/65（66%）。护士专家是最常寻求帮助的对象24/63（38%）。结论：患者能够学习适当的技术技能，但对家庭监测的看法各不相同；有针对性的评估和量身定制的支持可能会有帮助。
