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- RESEARCH
The work we are going to illustrate has been accepted both for oral and poster presentation at the 8th International Conference on Home Mechanical Ventilation held in Lyon - France from March 7 to March 9, 2001
ABSTRACT
HOME MECHANICAL VENTILATION IN ITALY: THE POINT OF VIEW OF 179 VENTILATOR USERS WITH NEUROMUSCULAR DISORDERS
Liana Garini*, Ulisse Di Corpo**,
*inforesp - information service for respiratory care, **dicosoft - statistical analyses
For persons affected by neuromuscular disorders mechanical ventilation is today more than a therapeutic option: it is something that improves breathing and breathing means life.
Ventilators are widely accepted as are all the other technical aids: as tools to face the progressive weakness of the muscles, the respiratory ones included.
Difficulties may arise however with the daily care of persons on home mechanical ventilation. Countries with a good public helper system provide full personal assistance whereas countries like Italy lay the responsibility totally on families. In this case coping with the new situation may become a heavy burden.
Taking into account the experience of some European countries, we have investigated problems, expectations, feelings, needs, wishes of ventilator users throughout Italy (1997-1998). This represents the first investigation of the kind in our country.
The data collected show: the mode of ventilation (NIPPV-positive-negative, IPPV), general information (age, school, finance, housing), medical assistance, problems with the ventilation, suggestions to improve the quality of life and personal care provisions.
BACKGROUND
The increasing number of persons affected by neuromuscular disorders who are
receivingmechanical ventilation has suggested the Milano branch of U.I.L.D.M. - Unione
Italiana Lotta alla Distrofia Muscolare (Italian Muscular Dystrophy Association) - to investigate the quality of life of these ventilator users.
Being an association of users, aim of the research was mainly directed to ascertain
(i) how the ventilatory treatment had modified the living conditions
(ii) the degree of satisfaction about health and social provisions provided for in our country
(iii) the suggestions of the ventilator users to improve the quality of life.
METHODS
The ventilator users have been reached with the help of the various branches of the association disseminated all over Italy and with the help of some Expert Centres.
The investigation has been carried out during the period June 1997 - March 1998 using a questionnaire prepared having taken into account
(i) the peculiar situation of our country and
(ii) the experience of some European countries which have a better welfare system.
Telephone calls made to the various branches of the associations and to the Expert Centres to investigate the number of possible subjects to be interviewed had originally indicated in about 350 the persons who could be willing to answer the questionnaire.
The final number, however, has resulted in 179 questionnaires fully answered.
To our opinion, this was mainly due to
(i) an over estimation of possible answers made by the persons we have been contacted before sending the questionnaire
(ii) the unwillingness of some ventilator users to answer the questionnaire - especially in the south of Italy
(iii) the impossibility to rely on few and well prepared interviewers
(iv) the lack of financing.
RESULTS
In spite of difficulties encountered, we think that the results of our work are of some value because
1st this research is the first of the kind in Italy
2nd the picture coming out of the research may be applicable to countries where carers identify almost totally with families
3rd the research has brought to light data regarding the different approach to ventilation followed by some Centres
4th it has confirmed that ventilation is accepted as a tool to help to prevent respiratory failures and to overcome acute
episodes
5th it has brought to evidence the difference between living requirements and expectations in groups of different ages, even
though the most represented sample is the one including young people with Duchenne Muscular Dystrophy.
FINAL CONCLUSIONS
As predictable in our country, only the 10.05% of ventilator users has a job, the 89.94% is unmarried, the 92.73% lives with the family.
The 11.18% states that the choice to live with the family has been a personal choice while the 55.31% declares it has been a family choice and the 33.51% declares it has been forced by circumstances.
These results correspond to the real Italian situation where family is a good maternal baby-sitter: this applies not only to disabled persons but also to healthy young men and women.
As regards type and mode of ventilation it has been interesting to find out that one Centre in central Italy experiments different approaches to ventilation: if tracheostomy is not compulsory, besides positive pressure via mask, negative pressure is also being considered. Poncho is the most used mode of ventilation at first: it is however often followed by a changement into tracheostomy or nasal mask.
Reasons which have suggested ventilation are due to emergency (40%) and to progressive symptoms of respiratory failure and evidence during checkups (57.56%).
Self determination in deciding to start treatment is stated by 21.23%, the family has decided in 11.73%, while emergency is 40.22% of the cases. Medical advice has influenced the 25.70% of the decisions. Considerations may be made to the rather high percentage of emergencies which may explain the low rate of personal choice. This may also be explained with the young age of candidates.
Problems and difficulties caused by ventilation have been investigated asking the interviewed to give increasing scores having 1 for the problem considered very difficult to overcome and 10 for the less difficult one. Here we might have had some misunderstanding. The resulting picture, however, seems to fit to our experience.
Usually it takes time to everybody to adapt to the new situation. Families as well have to face the new situation with the new burdens. We must not forget that ventilation brings more caring in families which have no or little help from outside and which are often tired for years of continuous caring.
Personal assistance in Italy is provided only for persons living alone but often money doesn't cover all the expenses: nursing homes may be the last choice for severely disabled persons. Ventilation may compromise unstable situations.
Suggestions to improve quality of life and personal assistance provisions (multiple choice with increasing scores) shows at the first place personal assistance on a hourly bases: this means according to needs. At the second place there is the request to have a prompt repair service for sudden breakages of ventilators. This may sound peculiar but it represent a cause of distress especially for persons with tracheostomy.
As regards the degree of satisfaction about personal assistance the 57.54% considers it sufficient, the 22.35% low, the 9.50% very low, the 7.82% high. Here again the high percentage of young people answering the questionnaire may have influenced this data. Persons living alone are certainly more concerned with financial problems and personal assistance.
RESULTS
VENTILATOR USERS = 179
SEX: male = 144 female = 35
YEARS OF BIRTH No. OF SUBJECTS
1901 - 1920 1
1921 - 1950 28
1951 - 1960 21
1961 - 1970 41
1971 - 1980 77
1981 - 2000 8
No answer 3 TOTAL = 179
DISTRIBUTION IN THE COUNTRY
North = 89
Centre = 44
South = 27
No answer = 19 TOTAL = 179
DIAGNOSIS
Duchenne Muscular Dystrophy = 87
Other types of Muscular Dystrophy = 45
Spinal Muscular Atrophy = 21
Amyotrophic Lateral Sclerosis = 8
Congenital Myopathies = 9
Other Neuropathies = 9 TOTAL = 179
PHYSICAL CONDITIONS
Wheelchaired = 145
Still walking = 16
In bed = 4
Other = 14 TOTAL = 179
NUTRITION
With help = 114
Without help = 57
Gastrostomy = 7
No answer = 1 TOTAL = 179
WORKING CONDITIONS
Working: No = 160 Yes = 18 No answer = 1
CIVIL STATUS
Unmarried = 161
Married = 14
Divorced = 1
Widower = 1
No answer = 2 TOTAL = 179
FINANCIAL CONDITIONS
Family income = 166
Disability pension = 136 (linked to annual income)
Disability allowance = 156
Other contributions = 16
No answer = 2
FINANCIAL CONDITIONS ARE CONSIDERED:
Very good = 2
Good = 41
Sufficient = 76
Poor = 43
Insufficient = 17 TOTAL = 179
LIVING CONDITIONS:
With the family = 166
Community = 7
Alone = 2
Nursing home = 2
Other = 2 TOTAL = 179
LIVING CONDITIONS HAVE BEEN:
A personal choice = 20
A family choice = 99
Forced by circumstances = 60 TOTAL = 179
TYPE AND MODE OF VENTILATION AT THE TIME OF RESEARCH:
POSITIVE PRESSURE:
Nasal mask = 93
Facial mask = 13
Tracheostomy = 67
NEGATIVE PRESSURE:
Poncho = 7
Iron lung = 1 TOTAL = 181
One treatment includes both poncho and nasal mask
One treatment includes both poncho and iron lung
CHANGEMENTS IN TREATMENTS BEFORE THE TIME OF THE RESEARCH:
14 Nasal mask INTO Tracheostomy
11 Poncho INTO Tracheostomy
1 Tracheostomy INTO Nasal
3 Poncho INTO Nasal
1 Cuirasse INTO Nasal
1 Iron lung INTO Nasal
REASONS WHICH HAVE SUGGESTED VENTILATION:
Sudden worsening of respiratory conditions = 82
Progressive symptoms of respiratory failure = 47
Evidence of respiratory impairment during periodical checkups = 71
Medical advice = 5 TOTAL = 205
THE DECISION TO START VENTILATION HAS BEEN DUE TO:
Personal choice = 38
Family choice = 21
Emergency = 72
Medical advice = 46
No answer = 2 TOTAL = 179
PROBLEMS/DIFFICULTIES CAUSED BY VENTILATION:
Personal adaptation to the new situation = 121
Family adaptation to the new situation = 98
Personal adaptation to ventilator = 91
To fit/accept nasal/face mask = 73
To obtain personal assistance = 71
To use the ventilator = 63
More costs for the family = 57
Inadequate support by the family doctor = 54
Poor general information on ventilation = 53
Poor information on the treatment received = 53
Inadequate maintenance of ventilator = 52
To find disposable material = 50
Inadequate psychological support = 49
Family has to face everything = 48
Inadequate support by the Centre/Hospital = 47
For nutrition = 45
For air secretion clearance = 38
To wean from respirator = 34
To reobtain speech = 35
To obtain a back up ventilator = 32
Other = 17
No answer = 10
WITH VENTILATION LIFE CONDITIONS ARE CONSIDERED:
Considerably improved = 60
Fairly improved = 72
Unchanged = 29
Worsened = 12
Considerably worsened = 6 TOTAL = 179
THE PHYSICAL WELL-BEING IS CONSIDERED:
Improved = 132
Unchanged = 23
Worsened = 9
No answer = 15 TOTAL = 179
THE PHYSICAL/MENTAL EFFICIENCY IS CONSIDERED:
Improved = 77
Unchanged = 75
Worsened = 7
No answer = 20 TOTAL = 179
DEGREE OF SATISFACTION ABOUT PERSONAL ASSISTANCE PROVIDED FOR BY WELFARE SYSTEM:
Very low = 17
Low = 40
Sufficient = 103
High = 14
No answer = 5 TOTAL = 179
SUGGESTIONS TO IMPROVE QUALITY OF LIFE AND PER-SONAL ASSISTANCE PROVISIONS:
Hourly-based personal assistance = 121
Prompt repair service for ventilator defaults = 112
More involvement of family doctors = 93
Adequate nursing assistance = 89
Mutual self-help groups = 86
Specific training for family/parents = 85
Knowledge to be prepared for treatment = 79
Specific training for carers/operators = 76
Adequate psychological support = 69
Nursing homes for short periods = 69
Personal assistance 24 hours a day = 59
Money to allow self management = 55
Flats with centralized nursing/care assistance = 45
Nursing homes for long periods = 43
Nursing homes for medium periods = 36 |