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Level of need in the population

Adults :: Long term neurological conditions :: Level of need in the population

Prevalence and incidence

National estimates of prevalence and incidence for a range of conditions have been applied to the Medway population and summarised in Table 1, listed in order of prevalence (highest to lowest). Also included in the table are local estimates based on data from GP practice records and Quality Outcomes Framework (QOF) data, including numbers of people with Parkinson's Disease, Multiple Sclerosis and Muscular Dystrophy who also have a possible diagnosis of depression.

Incidence Prevalence No. with possible depression
per 100,000 (based on national estimate) Number per 100,000 (based on national estimate) Number (based on national estimate) Number (based on local data)
Migraine 400 1,150 15,000 43,113 No data
Traumatic brain injury leading to LTC 175 503 1,200 3,449 No data
Essential tremor unknown unknown 850 2,443 328
Epilepsy 80 230 500-1,000 1,437-2,874 2,065
Parkinson’s disease 17 49 200 575 489 254
Cerebral palsy unknown unknown 144 414 235
Multiple sclerosis 4 11 144 414 475 285
Post-polio syndrome unknown unknown 100-300 287-862 0
Dystonia unknown unknown 65 187 No data
Muscular dystrophy unknown unknown 50 144 39 32
Spinal chord injury 2 6 50 144 No data
Charcot-Marie Tooth unknown unknown 37 106 No data
Spina bifida and congenital hydrocepalus unknown unknown 24 69 No data
Hungtingdon’s disease unknown unknown 14 39 No data
Myasthenia gravis unknown unknown 10 29 71
Hereditary Ataxia unknown unknown 10 28 No data
Motor neurone disease 2 6 7 20 38
CNS infections 7 21 unknown unknown No data
Table 1: Estimates of incidence and prevalence of LTNCs in Medway
Notes on table 1


• National estimates — All conditions based on various sources, applied to Medway's resident population of 287,417 (PCIS 2013 Q1 estimates).
• Local estimates (epilepsy) — of all the LTNCs, QOF data is only available for epilepsy, and provides figures for adults (aged 18+) of 1,882 (QOF 2011/12). An estimate for Medway prevalence among children and young people is 183 (based on estimate produced by NICE).
• Local estimates (all other conditions) — taken from clinical records of 54 of the 58 Medway GP practices. The registered population across these practices is 277,994, almost 10,000 people fewer than the resident population used to extrapolate from national estimates. The figures above were taken from an existing audit called 'Medway Prevalence' and were correct as at 28th August 2013.
• Possible depression — taken from 'Medway Prevalence' audit with data for the three conditions shown.

Differences between local and national estimates of prevalence

Discrepancies exist between estimates of prevalence extrapolated from national figures and local data from GP records. Despite being one of the most prevalent conditions nationally, GP records show essential tremor to be less prevalent in Medway than epilepsy, PD and MS. Cerebral palsy is also far less prevalent than estimated from national figures and post-polio syndrome appears to be entirely absent in the local population.

To some extent these differences are to be expected since Medway's population may not be representative of the national population. However, it possible that the large relative differences between national and local estimates for post-polio syndrome, essential tremor and muscular dystrophy are due to under- or misdiagnosis or people not being known to GPs.

It is noteworthy that local numbers of patients registered with Motor Neurone Disease (for which misdiagnosis is less likely given its severity and rapid progression) are almost double that of the national estimates. This has potential implications when planning services, particularly palliative care, for this condition. The number of patients registered with myasthenia gravis is also much higher than the national estimates. There is a slight genetic predisposition towards developing this condition [1] and it is possible that this is partly responsible for the high numbers in Medway.

Mental health co-morbidities

It is clear from Table 1 that a large proportion of people with MS (60%), muscular dystrophy (82%) and PD (52%) may also have depression. This has implications for the way in which services for people with LTNC need to be integrated with mental health services to ensure that their needs are met holistically. Work is planned by Medway CCG to identify more fully the level of depression associated with long term conditions in general.

Multiple Sclerosis and Parkinson's Disease prevalence

Table 2 shows estimates of the number of people with these conditions by stage of progression.

  Multiple sclerosis Parkinson’s disease
Diagnosis 22 53
Minimum-moderate impairment (MS)/ Maintenance (PD) 199 198
Complex 243 164
Palliative 11 74
Total 475 489
Table 2: Prevalence breakdown by phase of progression for MS and PD. Source Neuronavigator, breakdown calculated using total prevalence from GP records
Adult epilepsy prevalence

As mentioned above, adult epilepsy is the only LTNC included within QOF. Figure 1 shows that Medway had a much higher prevalence in 2011/12 than England and all of the ONS cluster towns.

Figure 1: Estimated prevalence per 1,000 of adult epilepsy in 2011/12.
Figure 1: Estimated prevalence per 1,000 of adult epilepsy in 2011/12, comparing Medway with England and the ONS cluster. Source: QOF 2012, based on data collected for QOF indicator Epilepsy 5

Mortality

Standardised Mortality Ratios (SMR) associated with a neurological condition (as the underlying cause of death) are presented in figure 2 for the last ten years (2002–12). This shows an increasing trend in mortality in Medway to 2008 followed by a decreasing trend since. Compared to the Kent SMR for this period of 100, the SMR in DGS is the same (100), while it is higher in Medway (113) and Swale (114).

Figure 2: SMR for deaths due to a neurological condition in Medway, DGS and Swale.
Figure 2: SMR for deaths due to a neurological condition in Medway, DGS and Swale

Table 3 shows condition specific mortality for the same period. There is also a description of the age distribution of deaths in 2012 across Kent and medway to give a picture of where the overall mortality burden lies.

  Number of deaths in Medway (2002-2012) 2012 deaths in Kent and Medway Description of age distribution
Parkinson’s 178 136 All adults aged 60+
Motor neurone disease and spinal muscular atrophy 70 68 Heavily skewed towards older adults with most in those aged 65+
Multiple Sclerosis 44 49 Approximate bell shaped curve between the ages 35-39 and 85+
Epilepsy 71 34 Very few children, fairly even distribution across adult ages until an increase in those 85+
Cerebral palsy 13 8 Deaths in both children and young adults
Huntingdon’s disease 30 9 All in adults aged 45+
CNS infections 6 sup All in adults 75+
Muscular dystrophy 9 sup
Spinal chord injury sup sup
Spina bifida and congential hydrocepalus sup sup Most in adults 70+
Myasthenia gravis 6 sup All in adults 75+
Guillain Barre syndrome sup sup All in adults 65+
Total deaths (any underlying neurological condition) 437 324 Heavily skewed towards adults 65+
Table 3: Number of deaths due to selected underlying LTNCs. Source: Office for National Statistics

Deaths due to epilepsy in Medway accounted for 21% of the total mortality due to epilepsy across K&M in the period 2002–12, compared with DGS (11%) and Swale (7%). Deaths due to Huntington's Disease in Medway were also disproportionately high, although this is expected given the presence of two homes in Medway dedicated to the care of people with advanced HD that take patients from outside the area. For PD, MS and MND, Medway has lower numbers of observed deaths than DGS, despite having a higher expected prevalence due to its larger population.

Admissions

There is an increasing trend in rates of both elective and emergency hospital admissions, where neurological conditions were the main reason for admission, since 2006, as shown in figures 3 and 4.

Figure 3: Elective admission rates due to LTNCs.
Figure 3: Elective admission rates due to LTNCs, 2006/07–2012/13
Figure 4: Emergency admission rates due to LTNCs.
Figure 4: Emergency admission rates due to LTNCs, 2006/07–2012/13

There is more variation shown in figure 4 between areas than figure 3.

Age specific rates of emergency hospital admissions, where a neurological condition was the primary cause for admission, across Kent and Medway CCGs in the period 2010–13 are shown in figure 5. Medway CCG has the highest rates in the 65–84 and 85+ age bands and the second highest rate in the 0–19 age band. The emergency hospital admission rate for the 20–64 age band is relatively low. This could be of significance for provision of both palliative and paediatric care.

Figure 5: Age specific rates of emergency admissions due to LTNC by CCG.
Figure 5: Age specific rates of emergency admissions due to LTNC by CCG, 2010–13. Source: SUS, Office for National Statistics

For elective admissions, the highest percentages of admissions in Medway are for patients aged 40 to 54 and 60 to 64. For emergency admissions, the highest percentages are for patients aged 0 to 4 and then over 40.

Conditions for which emergency admissions made up at least 80% of all admissions in 2010/11–2012/13 are epilepsy, migraine, PD, CNS infections, Guillain Barre syndrome, and HD. There were a large number of emergency epilepsy admissions, which accounted for 31% of all admissions due to a LTNC in the period. There is scope to greatly reduce this figure through better management or self–management of this condition.

The high proportion of elective MS admissions observed is due mainly to the presence of the Tysabri clinic at MFT, for which people with MS are admitted for a few hours so that they can be closely monitored during treatment.

There is a strong downward trend in emergency admissions for neurological conditions from the most to least deprived quintiles. For elective admission rate, there is not such a clear pattern. This is shown in figure 6.

Figure 6: Directly standardised rates of hospital admissions by deprivation quintile, Medway CCG, 2010--13.
Figure 6: Directly standardised rates of hospital admissions by deprivation quintile, Medway CCG, 2010–13

References

[1]   Sear E, Rana B, Bibby A. Better Co-ordination; Better Care - A review of services for people with Neuromuscular Conditions in the South East Coast 2010; South East Coast Specialised Commissioning Group, West Sussex.