Department of Rehabilitation, Physical Therapy Science & Sports, UMC Utrecht Brain Center, University Medical Center Utrecht, the Netherlands; Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht, and De Hoogstraat Rehabilitation, Utrecht, the Netherlands.
Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht, and De Hoogstraat Rehabilitation, Utrecht, the Netherlands; University of Groningen, University Medical Center Groningen, Department of Rehabilitation Medicine, Groningen, the Netherlands.
J Psychosom Res. 2020 May;132:109974. doi: 10.1016/j.jpsychores.2020.109974. Epub 2020 Feb 20.
To describe illness cognitions among patients with amyotrophic lateral sclerosis (ALS), to study cross-sectional associations between illness cognitions and health-related quality of life (HRQoL) and to study the predictive value of illness cognitions measured shortly after the diagnosis for HRQoL at follow-up.
Prospective longitudinal design. We administered Self-report questionnaires at study onset (n = 72) and follow-up (n = 48). Median follow-up period was 10.0 months. At baseline median ALS Functional Rating Scale-Revised was 43, median time since onset of symptoms was 13.6 months, 79% of patients presented with spinal onset. Illness cognitions Helplessness, Acceptance and Disease Benefits were measured with the Illness Cognitions Questionnaire (ICQ) and HRQoL with the ALS Assessment Questionnaire (ALSAQ-40). Correlational and regression analyses were used.
Patients experienced more Helplessness at follow-up. We found no significant changes in Acceptance or Disease Benefits at follow-up. In cross-sectional analyses, Helplessness was independently related to worse HRQoL at baseline (β = 0.44; p = .001) and Acceptance and Disease Benefits were independently related to worse HRQoL at follow-up (β = -0.17, p = .045) and (β = -0.186, p = .03 respectively). Longitudinal analyses showed that, adjusted for disease severity at baseline, Helplessness at baseline was a predictor of worse HRQoL at follow-up (β = 0.43; p = .006). None of the illness cognitions were a significant predictor of HRQoL with adjustment for baseline HRQoL.
Helplessness was independently associated with HRQoL in the cross-sectional and longitudinal analyses. These results can help us identify patients shortly after diagnosis who might benefit from psychological interventions.
描述肌萎缩侧索硬化症（ALS）患者的疾病认知，研究疾病认知与健康相关生活质量（HRQoL）之间的横断面关联，并研究诊断后不久测量的疾病认知对随访时 HRQoL 的预测价值。
前瞻性纵向设计。我们在研究开始时（n=72）和随访时（n=48）进行了自我报告问卷评估。中位随访期为 10.0 个月。基线时 ALS 功能评定量表修订版中位数为 43，症状出现后中位数时间为 13.6 个月，79%的患者为脊髓发病。疾病认知无助感、接受度和疾病获益采用疾病认知问卷（ICQ）测量，健康相关生活质量采用肌萎缩侧索硬化评估问卷（ALSAQ-40）测量。采用相关和回归分析。
患者在随访时经历了更多的无助感。我们没有发现接受度或疾病获益在随访时有显著变化。在横断面分析中，无助感与基线时的 HRQoL 较差独立相关（β=0.44；p=0.001），而接受度和疾病获益与随访时的 HRQoL 较差独立相关（β=-0.17，p=0.045）和（β=-0.186，p=0.03 分别）。纵向分析表明，在基线疾病严重程度调整后，基线时的无助感是随访时 HRQoL 较差的预测因素（β=0.43；p=0.006）。在调整基线 HRQoL 后，疾病认知均不是 HRQoL 的显著预测因素。
无助感在横断面和纵向分析中与 HRQoL 独立相关。这些结果可以帮助我们识别诊断后不久可能受益于心理干预的患者。
