Coping with amyotrophic lateral sclerosis: an integrative view

被引:67
作者
Matuz, Tamara [1 ]
Birbaumer, Niels [1 ,2 ]
Hautzinger, Martin [3 ]
Kuebler, Andrea [1 ,4 ]
机构
[1] Univ Tubingen, Inst Med Psychol & Behav Neurobiol, D-72074 Tubingen, Germany
[2] Osped San Camillo, IRCCS, Venice, Lido, Italy
[3] Univ Tubingen, Dept Psychol, D-72074 Tubingen, Germany
[4] Univ Wurzburg, Dept Psychol Biol Psychol Clin Psychol & Psychoth, D-97070 Wurzburg, Germany
关键词
QUALITY-OF-LIFE; MOTOR-NEURON DISEASE; DEPRESSIVE-DISORDERS; SOCIAL SUPPORT; BREAST-CANCER; ALS; ADJUSTMENT; INDIVIDUALS; RESPONSES; STRESS;
D O I
10.1136/jnnp.2009.201285
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
Objectives To identify predictors of psychosocial adjustment to motor neurone disease. Methods A total of 27 individuals with a confirmed diagnosis of amyotrophic lateral sclerosis (ALS) participated in the study. The ALS functional rating scale mean score indicated a high physical impairment of the sample. Months since diagnosis varied between 4 and 129 (median 36). Adjustment outcomes were severity of depressive symptoms and individual quality of life (QoL). Predictors included social support, cognitive appraisal, coping strategies and illness parameters. Results Multiple regression analysis revealed that approximately 60% of the variance of depression and QoL were accounted for by social support, coping strategies and cognitive appraisal. The degree of physical impairment did not explain any variance of the adjustment outcomes. The best predictors for the severity of depressive symptoms were perceived social support and appraisal of coping potential (internal locus of control) and for individual QoL perceived social support. Conclusions The focus on medical issues in treatment of ALS is not sufficient. A palliative approach to ALS must equally imply advice with regards to adequate coping strategies, provide the adequate amount of disease- and support-related information at any one time, and encourage patients to seek social support. Sufficient medication and psychotherapy has to be provided for those patients who show depressive symptoms or disorder.
引用
收藏
页码:893 / 898
页数:6
相关论文
共 37 条
  • [1] DOES COPING HELP - A REEXAMINATION OF THE RELATION BETWEEN COPING AND MENTAL-HEALTH
    ALDWIN, CM
    REVENSON, TA
    [J]. JOURNAL OF PERSONALITY AND SOCIAL PSYCHOLOGY, 1987, 53 (02) : 337 - 348
  • [2] Anderson N., 2004, Encyclopedia of health and behavior, DOI DOI 10.4135/9781412952576.N113
  • [3] INDIVIDUAL QUALITY-OF-LIFE IN THE HEALTHY ELDERLY
    BROWNE, JP
    OBOYLE, CA
    MCGEE, HM
    JOYCE, CRB
    MCDONALD, NJ
    OMALLEY, K
    HILTBRUNNER, B
    [J]. QUALITY OF LIFE RESEARCH, 1994, 3 (04) : 235 - 244
  • [4] The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function
    Cedarbaum, JM
    Stambler, N
    Malta, E
    Fuller, C
    Hilt, D
    Thurmond, B
    Nakanishi, A
    [J]. JOURNAL OF THE NEUROLOGICAL SCIENCES, 1999, 169 (1-2) : 13 - 21
  • [5] A cross sectional study on determinants of quality of life in ALS
    Chiò, A
    Gauthier, A
    Montuschi, A
    Calvo, A
    Di Vito, N
    Ghiglione, P
    Mutani, R
    [J]. JOURNAL OF NEUROLOGY NEUROSURGERY AND PSYCHIATRY, 2004, 75 (11) : 1597 - 1601
  • [6] Longitudinal predictors of psychological distress and self-esteem in people with ALS
    Goldstein, L. H.
    Atkins, L.
    Landau, S.
    Brown, R. G.
    Leigh, P. N.
    [J]. NEUROLOGY, 2006, 67 (09) : 1652 - 1658
  • [7] Exploring quality of life following high spinal cord injury: a review and critique
    Hammell, KW
    [J]. SPINAL CORD, 2004, 42 (09) : 491 - 502
  • [8] Validity of the ALS-Depression-Inventory (ADI-12) -: A new screening instrument for depressive disorders in patients with amyotrophic lateral sclerosis
    Hammer, Eva Maria
    Haecker, Sonja
    Hautzinger, Martin
    Meyer, Thomas D.
    Kuebler, Andrea
    [J]. JOURNAL OF AFFECTIVE DISORDERS, 2008, 109 (1-2) : 213 - 219
  • [9] Hautzinger M., 1995, BDI: Beck-Depressions-Inventar Testhandbuch 2
  • [10] Subjective experience and coping in ALS
    Hecht, M
    Hillemacher, T
    Gräsel, E
    Tigges, S
    Winterholler, M
    Heuss, D
    Hilz, MJ
    Neundörfer, B
    [J]. AMYOTROPHIC LATERAL SCLEROSIS AND OTHER MOTOR NEURON DISORDERS, 2002, 3 (04): : 225 - 231