Allied Professionals Forum 2006

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Allied Professionals Forum 2006

• Coping strategies in life with ALS/MND
• Jette Moeller
• RehabilitationCentre for Neuromuscular Diseases

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Background

• ALS is an unmerciful disease which places the
  patient and his/her relatives in several
  difficult situations
• Life has to be lived to its full extent in spite
  of the worst possible prospects

3
Aaron Antonovsky

• Sense of Coherence
• Comprehensibility
• Manageability
• Meaningfulness

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Objectives

• Which coping strategies can help people to have a
  good life despite ALS
• Which personal factors are important to
  ALS-patients and their spouses in order to cope
  with the physical, psychological, economical and
  practical problems that arise from having ALS

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Clinical Outcomes

• 23 persons with ALS/MND were included from
  January 2004 to October 2005. All diagnosed
  according to the El Escorial criteria.
• 13 of the participants were diagnosed within a
  year before inclusion and 10 up to more than four
  years before.
• Patients with dementia or other diseases besides
  ALS/MND were excluded

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Interviews

• 47 interviews were performed in the participants
  homes.
• 23 shortly after inclusion, 17 were interviewed a
  second time six to 12 months later, two were
  interviewed a third time, and five widows were
  interviewed.
• At the interview the person with ALS/MND were
  asked to fill in the SOC-questionnaire.

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Participants

• Number of participants 23 (16 m, 7 f)
• Average age 63 (47-80 years)
• 19 filled in the SOC-questionnaire the first time
  and 14 at the second interview
• 6 died before the second interview

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SOC-questionnaire

• The SOC questionnaire had 13 items and every item
  had a score from 1 to 7
• The highest possible score was 91 (13x7) and the
  lowest 13
• Median score at the first interview was 75 (46-
  89) and at the second interview 72.5 (58-86)

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Female - male

• No females had a score higher than 75
• Median score for the 5 females that filled in the
  questionnaire the fist time was 69 (59-75) and
  second 67 (58-71)
• Highest score for the males was 89
• Median of the first score for 14 males was 78.5
  (46-89), and of the second score from 9 males it
  was 76 (60-86)

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High score of SOC in ALS/MND

• A Danish population study found the mean SOC
  score to be 65 with a standard deviation of 11,
  and a poor score was associated with high
  prevalence of long-term illness among respondents
  older than 50 years of age.
• Sense of coherence, social class and health in a
  Danish population
• Due E. and Holstein B. 1990

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Understanding SOC in NMD

• Why is life satifaction maintaind in spite of
  progressive loss of function?
• Expectations are adapted to possibilities
• Campbell A. 1976
• QoL is less related to physical functioning
• Simmons Z et al. Neurology 2000
• Determinants are
• Social support and instrumental support
• De Groot et al. in prep.
• Spritual, religious and psychological factors
• Robbins et al. Neurology 2001 56

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High SOC questionnaire score

• Participant no 3
• Male 77 years old
• Married for the 4th time, 4 children, 10
  grandchildren
• Manager and still working
• MND for more than 4 years
• Wheelchair-user and impaired speech

13
High SOC-questionnaire score

• Participant no 5
• Male 62 years old
• Married, 3 children, 4 grandchildren
• Retired manager
• ALS for 3 years. Wheelchair-user and normal
  speech at the first interview, at the second,
  mechanically ventilated and impaired speech.

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Cases with high score

• Both men were managers and used to make
  decisions in many unexpected situations. They
  still find life manageable and meaningful and
  solve the problems arising from their disability
  in a rational way. They have to make priorities
  to be able to continue the activities they find
  are most important.

15
Low SOC-questionnaire score

• Participant no 16
• Male 80 years old
• 25 years with his second wife, 4 children from
  first marriage
• Retired lithographic artist at a newspaper
• Had had the diagnosis of bulbar MND for 6 months.
  Could not eat and speak.

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Case with low score

• The person with a low SOC-score did not find
  his life to be manageable with the disease. He
  was 80 years old but showed no signs of dementia.
  He has always worried about new things, and in
  this situation he could not manage to continue
  the activities from his former life.

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Programme Descriptions

• The study was made in collaboration with two
  neurological departments, Respiration Centre Vest
  and RehabilitationCentre for Neuromuscular
  Diseases and is designed as a longitudinal,
  prospective multicentre study.

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The interview-guide

• 1. The disease and daily life with it
• 2. Information obtained by the patient and the
  spouse about the disease and its consequences
• 3. The former life of patient and family
• 4. Practical and personal help
• 5. Expectations for the future

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Interview theory

• The interviews were semi-structured and based on
  the theories of The Qualitative Research
  Interview by Steiner Kvale
• Analyses of the interviews were also based on
  theories by Steiner Kvale and linked to the
  theoretical concepts of coping strategies by
  Aaron Antonovsky.

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Recommendation to the Field

• To support people with ALS/MND coping with the
  physical, psychological, economical and practical
  problems that arise from having the disease it is
  important to have some knowledge about the
  coping-strategies of the individual person and
  his/her family.
• From this study it seems that the
  SCO-questionnaire is a tool to support other
  information about the persons former life.