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Resources, Needs and Well-being of people with Multiple Sclerosis
MacLurg K(1), Reilly P(1) Hawkins S(2);Evason E(3), Whittington D(3).
1. Department of General Practice, Queens University of Belfast. 2. Department of Neurology, Royal Victoria Hospital. 3. University of Ulster
BACKGROUND
Medical Services Accessed
•MS is the commonest cause of disability in young adults
•The costs of MS are significant in clinical, social and economic terms
•However each GP only has a few patients with MS, these patients have a wide range of disability &
differences in disease progression.
•Their multiple complex needs require a wide range of services and support.
•No previous studies have examined how the supply of community services compares with demand
The frequency of GP consultations, medication use and Neurology OPD attendances are shown below.
GP consultations per annum
Total Tablets
70
70
Over 12
60
Number of Patients
7 to 12
50
Num ber of Patients
4 to 6
AIM
To describe a representative sample of MS patients in the community in terms of
benefits and services accessed, met and unmet needs and investigate how this
relates to their quality of life.
40
70
11 or more
3 or less
30
20
60
6 to 10
17
50
Number of Patients
60
Neurology OPD
0 to 5
40
30
20
40
4
22
26
6
discharged
over 1 year
30
in past year
24
20
18
10
10
10
50
1
4
in past 6/12
14
7
6
0
0
0
METHOD
Mild
Moderate
Mild
Severe
Mild
Disability
Moderate
Severe
Moderate
Severe
Disability
Disability
General Practitioners in a representative network of computerised primary care practices (DRGP)
were asked to identify patients with MS. Ethics committee approval and informed participant consent
The correlation between participants EDSS and either the number of GP consultations they had each year
was obtained.
or the number of regular medications they took is significant at the 0.01 level (spearman’s Rho, 1 tailed). The
Patients initially participated in a survey, which included
moderately disabled were most likely to have seen a neurologist in the past year (p<0.01)
•demographic details
Data Retrieval in General Practice Project
•level of disability
(DRGP)
•use of community services
Community Services Accessed
•based in the Department of General Practice
•need for community services
The chart (right) shows which community services
at
QUB
•quality of life
were accessed by our respondents. Receipt of
•network of computerized practices across
GP case notes and computer records were examined
community nursing, care attendant and social work
Northern Ireland
services was very significantly related to increasing
•diagnosis of MS verified
•diagnostic registers for about 13% of the
disability (p<0.001) The frequency of community
•category of MS
total population
nursing visits was also significantly related to the
•timings of symptoms and diagnosis
degree of disability (p<0.001) Receipt of
•practices situated in inner
•GP attendances
physiotherapy was also significantly related to
city/suburban/rural settings
•medications
disability (p<0.05). Home help and occupational
•hospital outpatient appointments
•patient profile broadly representative of
therapy services showed similar trends but failed to
population profile
reach significance.
Data Analysis
Results were entered on SPSS (Version 11.0).
EDSS score was recorded for each participant
RESULTS
Results were grouped by level of disability
Mild - able to walk 300m without aid or rest
Moderate -can walk at least 5m with aids
Severe - wheelchair or bed bound
Unmet Needs
Characteristics of Participants
149 patients with a definite diagnosis of MS participated. Their demographic, disease and socioeconomic details are shown in the table below
Women (%)
Age(y)(mean(range))
Disease pattern (%)
Secondary Progressive
Primary Progressive
Relapsing Remitting
Benign
Total Sample
Mild
Moderate
Severe
.n= 149
EDSS 0-4.5
.n=35
EDSS 5.0-6.5
.n=61
EDSS 7.0-9.5
.n=53
66.4
74.3
63.9
64.2
51.0 (24-82)
47.9 (26-82)
50.7 (26-78)
53.4 (24-76)
41
15
38
6
9
3
63
26
36
16
48
0
68
21
11
0
Years since first symptoms (mean(range))
19.0(0-41)
13.7 (3-33)
15.5 (2-37)
18.1 (0-41)
Years since diagnosis (mean(range))
11.8 (0-39)
8.0 (0-22)
11.0 (0-36)
15.2 0-39)
66
9
9
15
80
11
6
3
62
15
8
15
60
2
13
25
Marital Status (%)
Married / cohabiting
Separated / divorced
Widowed
Single, never married
Household (%) lives:
Alone
Alone with children(<18)
With spouse only
With family or friend
carehome
17
3
26
52
3
11
3
31
54
0
26
5
26
43
0
11
0
21
60
8
House Alterations (%)
None
Major
Minor
Waiting for house alterations
53
22
25
5
86
6
9
3
48
30
23
8
38
25
38
2
Employment (%)
Employed
Medically Retired
Retired, Age
Homemaker or Student
Unemployed
21
56
11
7
5
43
34
11
11
0
21
51
13
7
8
8
75
8
6
4
Pensions or benefits (%)
Pension
Disability related income
Unemployment related income
Income support / other benefit
No benefits
32
78
3
13
15
23
40
0
6
43
23
89
5
18
10
47
91
2
13
4
The majority were married although this decreased with increasing disability. One fifth of the
participants were the only adult in their household; this included four women who lived with
children under 18. A quarter of the severely disabled had never married. House alterations and the
extent of them were significantly related to disability (p<0.001)
Employment decreased with increasing disability and medical retirement increased (p<0.001).
However four of the severely disabled were employed and twelve of the mildly affected were
medically retired. Receipt of disability related income increased with disability (p<0.001) as did
receipt of pensions (p<0.01) but five of the severely disabled did not receive any disability related
benefit, two of whom received no pensions or benefits at all.
Community nursing
25
Care attendant
Home help
20
Number
Demographic Details
Unmet Needs
Physiotherapy
15
Occupational therapy
Social work
10
Day centre
5
Respite care
Incontinence service
0
Total
Mild
Moderate
Severe
Chiropodist
The chart (left) shows unmet needs for
community services Physiotherapy is the
most frequently cited unmet need then
respite care and home help services.
Community nursing was the service already
received by the largest number of
participants; those who felt they needed but
were not receiving it were all moderately
disabled. A similar peak in unmet needs for
the moderately disabled occurred for
occupational therapy and social work; there
is a lag time for implementing services.
Other unmet needs were for: advice on
benefits, advice on house adaptations,
advice on interferon funding, social
support,, specialist nurses or counsellors or
a night sitting service.
Fulfilment and Quality of Life (F-Q score)
F-Q score distribution
20
Five questions relevant to fulfilment in life were
combined with two Likert scales relating to quality of
life to produce an overall “F-Q score” which had good
internal reliability (Cronbach’s Alpha = 0.8876). This
score was skewed towards the positive.
10
0
FQscore
•
•
•
The F-Q score was not related to participant’s characteristics or the services they received.
The F-Q SCORE was significantly related to the presence of unmet needs (p=0.002(KW)).
Wanting care such as community nursing, care attendants or home help was particularly
important (p=0.001(KW)) although wanting therapy such as physiotherapy or occupational therapy
was also significant (p=0.021(KW)).
SUMMARY
This study is the first to report on unmet needs for community services. Unmet
needs are important because they are related to fulfilment and quality of life (F-Q
score). We have shown that the use of medical and community services increases
with increasing disability but there is a peak of unmet needs among the moderately
disabled. In a progressive illness this could be anticipated and mechanisms put in
place to address these needs as they develop particularly as we have shown that it is
these unmet needs, which influence patients fulfilment and quality of life.
Acknowledgements Funding was provided by the Multiple Sclerosis Society (GB &NI)