Individualized Drug Therapy Research Program, Faculty of Medicine, University of Helsinki, Helsinki, Finland.
Department of Pulmonary Medicine, Heart and Lung Center, Helsinki University Hospital, Helsinki, Finland.
J Palliat Med. 2023 Oct;26(10):1357-1364. doi: 10.1089/jpm.2022.0548. Epub 2023 Jun 27.
Research on health-related quality of life (HRQoL) is crucial for developing comprehensive palliative care in idiopathic pulmonary fibrosis (IPF). To study IPF patients' HRQoL compared with general population and its association with dyspnea in a longitudinal follow-up. Assessment of IPF patients' HRQoL by a generic tool. Comparison of baseline data with the general population and a 30-month follow-up with 6 months intervals. In total, 246 IPF patients were recruited from the Finnish nationwide real-life study, FinnishIPF. Modified Medical Research Council (MMRC) dyspnea scale for dyspnea and the generic HRQoL tool 15D for the total and dimensional HRQoL were used. At baseline, the mean 15D total score was lower (0.786, standard deviation [SD] 0.116) in IPF patients than in the general population (0.871, SD 0.043) ( < 0.001) and among the IPF patients with MMRC ≥2 compared with those with MMRC <2 ( < 0.001). In patients with MMRC ≥2, significant impairment compared with general population existed in 11 dimensions of HRQoL, such as breathing, usual activities, and sexual activity, whereas this was true in only 4 dimensions in MMRC <2 category. Mental function was not impaired in either group. During the follow-up, 15D total score decreased in both MMRC categories ( < 0.001) but stayed constantly worse in the MMRC ≥2 group. Seven and two dimensions of HRQoL significantly declined in the categories of MMRC <2 and MMRC ≥2, respectively. Patients with IPF, especially if dyspnea limits everyday life, suffer from widely impaired HRQoL, although self-assessed mental capability is preserved. Integrated palliative care is supported to face the multiple needs of IPF patients.
研究与健康相关的生活质量(HRQoL)对于开发特发性肺纤维化(IPF)的综合姑息治疗至关重要。研究 IPF 患者与普通人群的 HRQoL 比较及其与呼吸困难的纵向随访相关性。使用通用工具评估 IPF 患者的 HRQoL。将基线数据与普通人群进行比较,并在 30 个月的随访中每 6 个月进行一次比较。总共招募了来自芬兰全国真实生活研究芬兰 IPF 的 246 名 IPF 患者。使用改良的医学研究委员会(MMRC)呼吸困难量表评估呼吸困难,使用通用 HRQoL 工具 15D 评估总 HRQoL 和维度 HRQoL。在基线时,IPF 患者的 15D 总评分平均值(0.786,标准差 [SD] 0.116)低于普通人群(0.871,SD 0.043)( < 0.001),且 MMRC ≥2 的 IPF 患者与 MMRC <2 的患者相比( < 0.001)。在 MMRC ≥2 的患者中,与普通人群相比,HRQoL 的 11 个维度存在明显的损害,如呼吸、日常活动和性行为,而在 MMRC <2 类中只有 4 个维度存在这种情况。两组的精神功能均未受损。在随访期间,两个 MMRC 类别中的 15D 总评分均下降( < 0.001),但在 MMRC ≥2 组中情况持续恶化。在 MMRC <2 和 MMRC ≥2 类别中,分别有 7 个和 2 个 HRQoL 维度显著下降。特别是如果呼吸困难限制日常生活,IPF 患者会遭受广泛受损的 HRQoL,尽管自我评估的精神能力得以保留。姑息治疗的综合治疗得到支持,以满足 IPF 患者的多种需求。