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肌萎缩侧索硬化症患者及其照料者的心理复原力与痛苦状况

Resilience and distress among amyotrophic lateral sclerosis patients and caregivers.

作者信息

Rabkin J G, Wagner G J, Del Bene M

机构信息

Department of Psychiatry, College of Physicians and Surgeons, Columbia University, New York, NY, USA.

出版信息

Psychosom Med. 2000 Mar-Apr;62(2):271-9. doi: 10.1097/00006842-200003000-00020.

DOI:10.1097/00006842-200003000-00020
PMID:10772408
Abstract

OBJECTIVES

The objectives of this study were to assess the prevalence of depressive disorders and symptoms and their correlates in patients with amyotrophic lateral sclerosis (ALS) and caregiver spouses and to identify dimensions of resilience as well as distress.

METHODS

Fifty-six patients with ALS and 31 caregivers were interviewed on one occasion, and 20 patients were subsequently reinterviewed during a scheduled medical visit at an ALS center. Major measures included the Structured Clinical Interview for DSM-IV, the Beck Depression Inventory, the Schedule of Attitudes Toward Hastened Death, quality of life, spirituality, and degree of hopelessness. The ALS Functional Rating Scale, spirometry measures of forced vital capacity, and the Karnofsky Performance Index were used to assess physical status.

RESULTS

Neither patients nor caregivers displayed significant psychopathology with respect to either current depressive disorders or scores on symptom scales. Depressive symptoms and psychological distress were not related to time since diagnosis, degree of disability, or illness progression during the period of observation. More interest in hastened death was associated with greater distress, but willingness to consider assisted suicide was not. Among caregivers, perceived caregiver burden was significantly associated with finding positive meaning in caregiving. Concordance between patient and caregiver distress was high, suggesting that attention to the mental health needs of caregivers may alleviate the patient's distress as well.

CONCLUSIONS

Clinical depression or significant depressive symptomatology is not an inevitable or common outcome of life-threatening illness, even in the presence of major disability.

摘要

目的

本研究的目的是评估肌萎缩侧索硬化症(ALS)患者及其照料配偶中抑郁症及症状的患病率及其相关因素,并确定心理韧性和痛苦的维度。

方法

对56例ALS患者和31名照料者进行了一次访谈,随后在ALS中心的一次定期医疗就诊期间对20例患者进行了再次访谈。主要测量指标包括《精神疾病诊断与统计手册》第四版(DSM-IV)结构化临床访谈、贝克抑郁量表、对加速死亡的态度量表、生活质量、精神性和绝望程度。使用ALS功能评定量表、用力肺活量的肺量计测量以及卡诺夫斯基功能状态评分来评估身体状况。

结果

无论是患者还是照料者,在当前抑郁症或症状量表得分方面均未表现出明显的精神病理学特征。在观察期内,抑郁症状和心理痛苦与诊断后的时间、残疾程度或疾病进展无关。对加速死亡的更多兴趣与更大的痛苦相关,但考虑协助自杀的意愿则不然。在照料者中,感知到的照料负担与在照料中找到积极意义显著相关。患者和照料者的痛苦之间的一致性很高,这表明关注照料者的心理健康需求也可能减轻患者的痛苦。

结论

临床抑郁症或显著的抑郁症状并非危及生命疾病的必然或常见结果,即使存在严重残疾也是如此

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