Characteristics of participants
178 people with MS were identified, of whom 168 (94%) agreed to participate in the study. Notes were unavailable for 11 and eight did not have a definite diagnosis of MS, leaving 149 participants. Demographic, disease and socioeconomic details are shown in . Two-thirds were female. The age of the participants ranged from 24 to 82 years, with a mean age of 51 years. On average, patients were diagnosed with MS 12 years previously, and had experienced symptoms of MS for almost 20 years. Of these, 23% were mildly disabled, 41% were moderately disabled and 36% were severely disabled. Two-fifths had relapsing remitting MS and another two-fifths had secondary progressive MS.
Although most participants were married, this decreased with increasing disability. A quarter of the severely disabled had never married. One-fifth of the participants were the only adult in their household, including four females with children under 18 years.
Twenty-one per cent were employed and 56% were medically retired. Employment decreased with increasing disability (P<0.0005) and medical retirement increased (P<0.0005). However, 12 of the mildly affected were medically retired, while four of the severely disabled were employed.
Forty per cent of those mildly affected received disability-related income. This increased to 91% of those severely disabled (P<0.0005). Receipt of pensions followed a similar trend (P = 0.010). Having had house alterations was also related to disability (P<0.0005). Those waiting for house alterations were mostly moderately disabled.
Medical services accessed
The frequency of GP consultations, medication use and neurology outpatient attendances are shown in . There is weak evidence that the more disabled patients saw their GP more frequently (P = 0.012). Taking more medications regularly was very significantly related to increasing disability (P<0.0005). Twelve participants took no regular medications. Only two (6%) of the mildly disabled participants took more than five regular medications, whereas 36 (68%) of the severely disabled participants did so.
Half of the participants were attending neurology clinics. The moderately disabled were most likely to have seen a neurologist in the past year (66%), compared with 47% of the severely disabled and 29% of the mildly affected (P = 0.002).
Community services accessed
shows which community services were accessed by our respondents. Community nursing is the most commonly accessed service. Receipt of community nursing, care attendant and social work services were significantly related to increasing disability (P<0.0005). Receipt of physiotherapy was weakly related to disability (P = 0.017). Similar trends in home help and occupational therapy services failed to reach significance. Respite care is mostly accessed by the severely disabled.
shows the number of people in each group expressing a need for a particular community service.
Physiotherapy is the most frequently perceived need, irrespective of disability. Overall, 13% of the study group already receive physiotherapy but 16% of the remainder would like to. Although 13% of moderately disabled participants and 17% of severely disabled participants already receive physiotherapy, 21% of the remainder in each group perceived a need for it.
The next most frequently perceived needs were for respite care (12%), chiropody (8%) and home help services (8%). Community nursing was the service already received by the largest number of participants (19%): those who felt they needed but were not receiving community nursing were all moderately disabled. The moderately disabled also perceived needs for occupational therapy and social work. In addition to the list of community services shown, participants also perceived needs for advice (n = 21), social support (n = 10), specialist nurses (n = 4) or a night sitting service (n = 4).
The wellbeing score was related to the disability group (P<0.0005). The lowest possible score was 6 and the highest possible score was 44; the average score for the mildly disabled was 27, for the moderately disabled was 21 and for the severely disabled was 19. This wellbeing score was not related to the services received, but it was related to perceived needs (P = 0.010). Wanting care services such as community nursing, care attendants or home help was particularly important (P<0.0005). Stepwise linear regression showed that disability accounted for 18.9% of the variation in wellbeing score (standardised ß coefficient −0.435, P<0.001) and wanting care services accounted for a further 5.2% of this variation (standardised ß coefficient −0.231, P = 0.002).