Identifying poor adaptation to a new diagnosis of motor neuron disease: A pilot study into the value of an early patient-led interview

Amyotrophic Lateral Sclerosis

Volumn 11, Issue 1-2, 2010, Pages 104-109

  Hugel, Heino ^a   Pih, Nicky ^b   Dougan, Charlotte P ^b   Rigby, Sally ^c   Young, Carolyn A ^b  

^a UNIVERSITY HOSPITAL AINTREE   (United Kingdom)

^b WALTON CENTRE FOR NEUROLOGY AND NEUROSURGERY   (United Kingdom)

^c ROBERT JONES AND AGNES HUNT ORTHOPAEDIC HOSPITAL   (United Kingdom)

Author keywords

Adaptation; Amyotrophic lateral sclerosis; Psychological diagnosis

Indexed keywords

ADULT; AGED; ALS FUNCTIONAL RATING SCALE; AMYOTROPHIC LATERAL SCLEROSIS; ANXIETY; ARTICLE; CLINICAL ARTICLE; COPING BEHAVIOR; DEPRESSION; FEMALE; FOLLOW UP; HOSPITAL ANXIETY AND DEPRESSION SCALE; HUMAN; MALE; MND COPING SCALE; MND SOCIAL WITHDRAWAL SCALE; MOTOR NEURON DISEASE; PHYSICIAN; PILOT STUDY; PRACTICE GUIDELINE; PRIORITY JOURNAL; PSYCHOLOGIC TEST; PSYCHOSOCIAL WITHDRAWAL; QUALITY OF LIFE; RATING SCALE; SCHEDULE FOR EVALUATION OF INDIVIDUAL QUALITY OF LIFE DIRECT WEIGHTING; SCORING SYSTEM; SEMI STRUCTURED INTERVIEW; SHORT FORM 36;

ADAPTATION, PSYCHOLOGICAL; ADULT; AFFECTIVE SYMPTOMS; AGED; AGED, 80 AND OVER; ANXIETY; DEPRESSION; FEMALE; HEALTH STATUS; HUMANS; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; MOTOR NEURON DISEASE; PILOT PROJECTS; PROGNOSIS; QUALITY OF LIFE; QUESTIONNAIRES; SOCIAL ISOLATION;

EID: 77649295135     PISSN: 17482968     EISSN: 1471180X     Source Type: Journal    
DOI: 10.3109/17482960902829205     Document Type: Article

References (21)

1. Goldstein LH, Leigh PN. Emotional and cognitive consequences of MND. Br J Health Psychol. 1999;4:193-208.
2. Earll L, Johnston M, Mitchell E. Coping with motor neurone disease: an analysis using self-regulation theory. Palliat Med. 1993;7:21-30.
3. Hogg KE, Goldstein LH, Leigh PH. The psychological impact of motor neuron disease. Psychol Med. 1994;24: 625-32.
4. McLeod JE, Clarke DM. A review of psychological aspects of motor neuron disease. J Neurol Sci. 2007;258:4-10.
5. Rigby SA. Coping with multiple sclerosis. 2003; PhD Thesis: University of Liverpool.
6. Duff J, Kennedy P. Spinal cord injury. In: Llewelyn S, Kennedy P, editors. Handbook of Clinical Health Psychology, 2nd edn. Chichester: John Wiley, 2006. p. 251-75.
7. Hugel H, Grundy N, Rigby S, Young CA. How does current care practice influence the experience of a new diagnosis of motor neuron disease? A qualitative study of current guidelines- based practice. Amyotroph Lateral Scler. 2006;7:161-6.
8. O'Brien MR. Information seeking behaviour among people with motor neuron disease. Br J Nurs. 2004;13:964-8.
9. Worthington A. Psychological aspects of motor neuron disease: a review. Clin Rehabil. 1996;10:185-94.
10. World Federation of Neurology Research Group on Neuromuscular Diseases. El Escorial World Federation of Neurology Criteria for the Diagnosis of Amyotrophic Lateral Sclerosis. J Neurol Sci. 1994;124 (Suppl):96-107.
11. Ware JE, Kosinski M, Dewey JE. How to score version 2 of the SF-36 health survey. Lincoln, RI: QualityMetric, Incorporated, 2000.
12. Lee JN, Rigby SA, Burchardt F, Thornton EW, Dougan C, Young CA. Quality of life issues in motor neuron disease: the development and validation of a coping strategies questionnaire, the MND Coping Scale. J Neurol Sci. 2001;191: 79-85.
13. Rigby SA, Thornton EW, Tedman S, Burchardt F, Young CA, Dougan C. Quality of life assessment in MND: development of a social withdrawal scale. J Neurol Sci. 1999;169:26-34.
14. Hickey MA, Bury G, O'Boyle CA, Bradley F, O'Kelly FD, Shannon W. A new short form individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDS. Br Med J. 1996;313:29-33.
15. Zigmond AS, Snaith RP. The Hospital Anxiety and Depression Scale. Acta Psychiatr Scand. 1983;67:361-70.
16. Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, Nakanishi A. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III). J Neurol Sci. 1999;169:13-21.
17. Young JM, McNicholl P. Against all odds: positive life experiences of people with advanced amyotrophic lateral sclerosis. Health Soc Work. 1998;23:35-43.
18. Ganzini L, Johnston WS, Hoffman WF. Correlates of suffering in amyotrophic lateral sclerosis. Neurology. 1999; 52:1434-40.
19. McDonald ER, Wiedenfeld SA, Hillel A, Carpenter CL, Walter RA. Survival in amyotrophic lateral sclerosis: the role of psychological factors. Arch Neurol. 1994;51:17.
20. The Association of British Neurologists. Downloaded 17.11.2008 http://www.theabn.org/downloads/ABN%20 short%20guidelines,%20Sept%202002.pdf.
21. Simmons Z, Bremmer BA, Robbins Ra, Walsh SM, Fischer S. Quality of life in ALS depends on factors other than strength and physical function. Neurology. 2000;55:388-92.