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Health care provision for people with a learning disability - Record-linkage study of epidemiology and factors contributing to hospital care uptake

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We know little about how people with a learning disability access secondary health care. To describe the epidemiology of learning disability, the influence of deprivation on prevalence and the pattern of secondary care uptake, including the effect of institutionalisation. A record-linkage study of secondary care contacts of 434,000 people between 1991 and 1997. A population with learning disability was identified; their secondary care contact was calculated and compared with the general population's. The distribution of people with a learning disability (n = 1595) correlated significantly with deprivation. The presence of a learning disability hospital significantly affected care uptake. Place of residence also affected acute admission to the learning disability hospital. Former institution residents generated 212 admissions per 1000 patients; community patients generated 18 per 1000. The admission rate with any psychiatric diagnosis to any setting was 26.3 per 1000 people with a learning disability; 16.5% of such patients had a dual diagnosis. Health provision for people with a learning disability is affected by institutional provision.
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10.1192/bjp.176.1.37Access the most recent version at doi:
2000 176: 37-41 The British Journal of Psychiatry
CHRISTOPHER L. MORGAN, ZAHIR AHMED and MICHAEL P. KERR
hospital care uptake
toRecord-linkage study of epidemiology and factors contributing
Health care provision for people with a learning disability:
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BackgroundBackground We know little aboutWeknowlittle about
how people with a learning disabilityhow people with a learning disability
access secondaryhealth care.access secondaryhealth care.
AimsAims To describe the epidemiology ofTo describe the epidemiology of
learning disability, theinfluence oflearningdisability, theinfluence of
deprivation on prevalence and the patterndeprivation on prevalence and the pattern
of secondary care uptake, including theof secondary care uptake, including the
effectof institutionalisation.effectof institutionalisation.
MethodMethod A record-linkage study ofA record-linkage study of
secondarycare contacts of 434 000secondarycare contacts of 434 000
peoplebetween1991and1997. Apeople between1991and1997. A
population withlearning disability waspopulation withlearning disability was
identified; their secondary care contactidentified; their secondarycare contact
was calculated and compared with thewas calculated and compared withthe
generalpopulation's.generalpopulation's.
ResultsResults The distribution of people withThe distribution of people with
alearningdisability (a learning disability (nn=1595) correlated=1595) correlated
significantly with deprivation.Thesignificantly with deprivation.The
presence of alearningdisabilityhospitalpresence of a learning disability hospital
significantlyaffected care uptake.Place ofsignificantly affected care uptake.Place of
residence also affected acute admissiontoresidence also affected acute admission to
the learning disability hospital.Formerthelearningdisabilityhospital.Former
institutionresidentsgenerated 212institutionresidentsgenerated 212
admissionsper1000 patients; communityadmissionsper1000 patients; community
patientsgenerated18 per1000.Thepatientsgenerated18 per1000.The
admissionrate with any psychiatricadmissionrate with anypsychiatric
diagnosis to any setting was 26.3 per 1000diagnosistoanysettingwas 26.3per1000
people with a learning disability; 16.5% ofpeople with alearningdisability; 16.5% of
such patientshad a dual diagnosis.such patientshad a dual diagnosis.
ConclusionsConclusions Health provision forHealth provision for
people with a learning disability is affectedpeoplewith a learning disabilityis affected
by institutional provision.byinstitutionalprovision.
Declaration of interestDeclaration of interest No conflictNo conflict
of interest.C.M. waspartly fundedbyaof interest.C.M. was partly funded bya
grant from Glaxo-Wellcome.grant from Glaxo-Wellcome.
People with learning disability have greaterPeople with learning disability have greater
health needs for physical and psychologicalhealth needs for physical and psychological
conditions (Welsh Health Planning Forum,conditions (Welsh Health Planning Forum,
1992; Beange1992; Beange et alet al, 1995). Knowledge of, 1995). Knowledge of
excess morbidity is not reflected in anexcess morbidity is not reflected in an
understanding of how this populationunderstanding of how this population
accesses secondary care. This is particu-accesses secondary care. This is particu-
larlylarly relevant with the shift towards de-relevant with the shift towards de-
institutionalisation of learning disabilityinstitutionalisation of learning disability
services and the increasing emphasis onservices and the increasing emphasis on
primary care as the gateway to health careprimary care as the gateway to health care
(Kerr, 1998). These trends have affected(Kerr, 1998). These trends have affected
professional roles, with the disability psy-professional roles, with the disability psy-
chiatrist passing the institutional healthchiatrist passing the institutional health
care function to primary care. While thecare function to primary care. While the
institution closure programme reflectedinstitution closure programme reflected
sociological and political imperatives, thesociological and political imperatives, the
impact on care provision has not been eval-impact on care provision has not been eval-
uated. In this paper we describe a learninguated. In this paper we describe a learning
disability population in terms of epi-disability population in terms of epi-
demiology and secondary care uptake fordemiology and secondary care uptake for
physical and psychological health. We willphysical and psychological health. We will
consider social and environmental factorsconsider social and environmental factors
which may influence secondary care andwhich may influence secondary care and
examine the impact of a learning disabilityexamine the impact of a learning disability
hospital as a provider of psychiatric andhospital as a provider of psychiatric and
medical services.medical services.
METHODMETHOD
Study populationStudy population
The study population consisted of the resi-The study population consisted of the resi-
dent population in the area that until Aprildent population in the area that until April
1996 constituted South Glamorgan Health1996 constituted South Glamorgan Health
Authority, a health district with a popu-Authority, a health district with a popu-
lation of 434 000 (1996 estimate). In Aprillation of 434 000 (1996 estimate). In April
1996, South Glamorgan Health Authority1996, South Glamorgan Health Authority
was incorporated into Bro Taf Healthwas incorporated into Bro Taf Health
Authority.Authority.
Data sources and record linkageData sources and record linkage
Data were available for all in-patientData were available for all in-patient
admissions (1991±97), out-patient appoint-admissions (1991±97), out-patient appoint-
ments (1991±96), attendances at accidentments (1991±96), attendances at accident
and emergency departments (A&E) (1993±and emergency departments (A&E) (1993±
96) and mortality (1993±97) for the resi-96) and mortality (1993±97) for the resi-
dent population of South Glamorgan. Indent population of South Glamorgan. In
addition, a learning disability register com-addition, a learning disability register com-
piled by the local social services departmentpiled by the local social services department
and a long-stay learning disability hospitaland a long-stay learning disability hospital
database were used to identify patients withdatabase were used to identify patients with
learning disability.learning disability.
These data underwent a process ofThese data underwent a process of
record linkage in order to identify thoserecord linkage in order to identify those
records relating to the same individualrecords relating to the same individual
patient and to identify those individualspatient and to identify those individuals
with a diagnosis of learning disability. Thewith a diagnosis of learning disability. The
principle and process of record linkage haveprinciple and process of record linkage have
been discussed previously (Gillbeen discussed previously (Gill et alet al , 1993), 1993)
and have been used in various studiesand have been used in various studies
(Morgan(Morgan et alet al, 1997; Currie, 1997; Currie et alet al, 1998)., 1998).
Briefly, partial identifiers (name, gender,Briefly, partial identifiers (name, gender,
date of birth, postcode and address) weredate of birth, postcode and address) were
combined and matched by using prob-combined and matched by using prob-
abilistic algorithms. The discriminatingabilistic algorithms. The discriminating
power of each item was calculated andpower of each item was calculated and
weighted for whether the identifier wasweighted for whether the identifier was
common or comparatively rare. A compo-common or comparatively rare. A compo-
site matching score was then calculated.site matching score was then calculated.
Data for in-patient admissions wereData for in-patient admissions were
derived from the contract minimum dataderived from the contract minimum data
set required for all UK health authorities.set required for all UK health authorities.
Admissions are recorded as finished con-Admissions are recorded as finished con-
sultant episodes (FCEs), defined as an in-sultant episodes (FCEs), defined as an in-
patient spell under the care of one hospitalpatient spell under the care of one hospital
consultant. An FCE finishes with either aconsultant. An FCE finishes with either a
hospital discharge or a discharge to thehospital discharge or a discharge to the
care of another consultant. It is thereforecare of another consultant. It is therefore
possible for a single admission to generatepossible for a single admission to generate
multiple FCEs.multiple FCEs.
Identification of patientsIdentification of patients
Patients with learning disability were iden-Patients with learning disability were iden-
tified by: (a) inclusion on the social servicestified by: (a) inclusion on the social services
district register; (b) an in-patient admissiondistrict register; (b) an in-patient admission
within the learning disability speciality orwithin the learning disability speciality or
with a diagnostic code of mental handicapwith a diagnostic code of mental handicap
(ICD±9 317±319 or ICD±10 F70±79;(ICD±9 317±319 or ICD±10 F70±79;
World Health Organization, 1978, 1986);World Health Organization, 1978, 1986);
(c) an out-patient appointment in the learn-(c) an out-patient appointment in the learn-
ing disability speciality; (d) inclusion on aing disability speciality; (d) inclusion on a
long-stay learning disability hospital datalong-stay learning disability hospital data
set.set.
AnalysisAnalysis
For calculations of period prevalence andFor calculations of period prevalence and
relative risk, the age- and gender-stratifiedrelative risk, the age- and gender-stratified
1996 population estimate for South1996 population estimate for South
Glamorgan was used as a denominator.Glamorgan was used as a denominator.
The numerator was the total number ofThe numerator was the total number of
patients identified with learning disabilitypatients identified with learning disability
excluding those known to have died beforeexcluding those known to have died before
1 January 1997. No adjustment was made1 January 1997. No adjustment was made
for migration to or from South Glamorgan.for migration to or from South Glamorgan.
All hospital activity was calculated for theAll hospital activity was calculated for the
1996 prevalent populations.1996 prevalent populations.
3737
BRITISH JOURNAL OF PSYCHIATRYBRITISH JOURNAL OF PSYCHIATRY (2000), 176, 37^41(2000), 176, 37^41
Health care provision for people with a learningHealth care provision for people with a learning
disabilitydisability
Record-linkage study of epidemiology and factors contributingRecord-linkage study of epidemiology and factors contributing
to hospital care uptaketo hospital care uptake
y
CHRISTOPHER L. MORGAN, ZAHIR AHMED and MICHAEL P. KERRCHRISTOPHER L. MORGAN, ZAHIR AHMED and MICHAEL P. KERR
{{
See editorialpp.10^11, thisissue.See editorialpp.10^11, thisissue.
MORGAN ET ALMORGAN E T AL
Patients with learning disability werePatients with learning disability were
classified into three groups. Those presentclassified into three groups. Those present
on the long-stay learning disability hospitalon the long-stay learning disability hospital
data set in 1996 were defined as the insti-data set in 1996 were defined as the insti-
tutional population. Those who had beentutional population. Those who had been
resident in the learning disability hospitalresident in the learning disability hospital
(that is, admitted before 1991 with a length(that is, admitted before 1991 with a length
of stay in excess of 365 days) but dis-of stay in excess of 365 days) but dis-
charged before 1996 were defined as thecharged before 1996 were defined as the
ex-institutional population, and thoseex-institutional population, and those
recorded as never resident in the learningrecorded as never resident in the learning
disability hospital were defined as thedisability hospital were defined as the
community population.community population.
Townsend index of socialTownsend index of social
deprivationdeprivation
By identifying each individual with learningBy identifying each individual with learning
disability, we were able to estimate the pre-disability, we were able to estimate the pre-
valence of learning disability in each districtvalence of learning disability in each district
ward on the basis of 1996 population esti-ward on the basis of 1996 population esti-
mates derived from the 1991 census. Thesemates derived from the 1991 census. These
prevalence figures were standardised by ageprevalence figures were standardised by age
and correlated to the Townsend index ofand correlated to the Townsend index of
material deprivation using the Pearsonmaterial deprivation using the Pearson
correlation coefficient. The Townsend in-correlation coefficient. The Townsend in-
dex has four key variables: proportion ofdex has four key variables: proportion of
population of working age unemployed;population of working age unemployed;
proportion of households without a car;proportion of households without a car;
proportion of households overcrowdedproportion of households overcrowded
(defined as households with more occu-(defined as households with more occu-
pantspants than rooms); and proportion of house-than rooms); and proportion of house-
holdsholds not owner-occupied. A Townsendnot owner-occupied. A Townsend
score of zero reflects the average for thescore of zero reflects the average for the
UK. A positive Townsend score indicatesUK. A positive Townsend score indicates
material deprivation, with higher scoresmaterial deprivation, with higher scores
representing higher degrees of deprivation.representing higher degrees of deprivation.
A negative Townsend score representsA negative Townsend score represents
comparative affluence.comparative affluence.
RESULTSRESULTS
PrevalencePrevalence
In 1996, the estimated resident populationIn 1996, the estimated resident population
of South Glamorgan was 434 000. We iden-of South Glamorgan was 434 000. We iden-
tified 1595 patients with learning disability,tified 1595 patients with learning disability,
a prevalence per 1000 of 4.1 for males anda prevalence per 1000 of 4.1 for males and
3.2 for females. The prevalence for the City3.2 for females. The prevalence for the City
of Cardiff was 4.0 per 1000, while it wasof Cardiff was 4.0 per 1000, while it was
2.7 for the semi-rural Vale of Glamorgan.2.7 for the semi-rural Vale of Glamorgan.
Figure 1 shows the prevalence of learningFigure 1 shows the prevalence of learning
disability plotted against age for both gen-disability plotted against age for both gen-
ders. There was a wide variation in preva-ders. There was a wide variation in preva-
lence with age, with peaks of 7.0 and 5.4lence with age, with peaks of 7.0 and 5.4
for males and females respectively in thefor males and females respectively in the
age group 35±44 years. We identified 134age group 35±44 years. We identified 134
subjects (8.4%) as resident in long-termsubjects (8.4%) as resident in long-term
institutional care. Of the 1461 communityinstitutional care. Of the 1461 community
patients, 76 (5.2%) were identified aspatients, 76 (5.2%) were identified as
ex-institutional patients discharged intoex-institutional patients discharged into
the community after 1 April 1991.the community after 1 April 1991.
Social deprivationSocial deprivation
Figure 2 shows the relationship between so-Figure 2 shows the relationship between so-
cial deprivation and prevalence of learningcial deprivation and prevalence of learning
disability by district ward, after excludingdisability by district ward, after excluding
those cases in long-term institutional care.those cases in long-term institutional care.
There was a strong correlation betweenThere was a strong correlation between
deprivation and prevalence (deprivation and prevalence (rr0.77,0.77,
PP550.001). The correlations for three age0.001). The correlations for three age
bands werebands were rr0.43 (0±24 years),0.43 (0±24 years), rr0.800.80
(25±64 years) and(25±64 years) and rr0.38 (65 and over).0.38 (65 and over).
Acute in-patient activityAcute in-patient activity
Between 1991 and 1997, there were 560 408Between 1991 and 1997, there were 560 408
FCEs in the acute specialities. Of these,FCEs in the acute specialities. Of these,
2422 (0.43%) involved patients with learn-2422 (0.43%) involved patients with learn-
ing disability. These patients consumeding disability. These patients consumed
0.43% of total bed-days. Mean length of0.43% of total bed-days. Mean length of
stay for learning disability patients wasstay for learning disability patients was
4.37 days, compared with 4.94 for the4.37 days, compared with 4.94 for the
non-learning-disability population. Thenon-learning-disability population. The
standardised admission ratios for patientsstandardised admission ratios for patients
with learning disability were 4.63 (95%with learning disability were 4.63 (95%
CI 3.79±5.47) for dentistry specialities,CI 3.79±5.47) for dentistry specialities,
1.83 (95% CI 1.74±1.92) for the medical1.83 (95% CI 1.74±1.92) for the medical
specialities and 0.64 (95% CI 0.59±0.69)specialities and 0.64 (95% CI 0.59±0.69)
for the surgical specialities. Admission ratesfor the surgical specialities. Admission rates
for patients with and without learning dis-for patients with and without learning dis-
ability are shown in Fig. 3. Table 1 showsability are shown in Fig. 3. Table 1 shows
a breakdown of admission rates and lengtha breakdown of admission rates and length
of stay for the major medical and surgicalof stay for the major medical and surgical
specialities.specialities.
Patients with learning disabilityPatients with learning disability
registered in a long-term care institutionregistered in a long-term care institution
and those always resident in the communityand those always resident in the community
had almost identical non-psychiatric admis-had almost identical non-psychiatric admis-
sions rates (239 and 240 per 1000 respec-sions rates (239 and 240 per 1000 respec-
tively). Those patients discharged fromtively). Those patients discharged from
long-term institutional care had a higherlong-term institutional care had a higher
admission rate (360 per 1000). The stand-admission rate (360 per 1000). The stand-
ardised admission ratio for those withinardised admission ratio for those within
institutional care compared with those ininstitutional care compared with those in
community care was 0.97 (95% CI 0.63±community care was 0.97 (95% CI 0.63±
1.31). For emergency admissions this ratio1.31). For emergency admissions this ratio
was significantly reduced to 0.59 (95% CIwas significantly reduced to 0.59 (95% CI
0.27±0.91).0.27±0.91).
The mean length of stay for institution-The mean length of stay for institution-
al patients (2.1 days) was considerably low-al patients (2.1 days) was considerably low-
er than that of those in community career than that of those in community care
(5.3 days) and that of ex-institutional pa-(5.3 days) and that of ex-institutional pa-
tients in community care (3.3 days). Fortients in community care (3.3 days). For
emergency admissions, the respectiveemergency admissions, the respective
figures were 2.9, 6.2 and 8.3 days.figures were 2.9, 6.2 and 8.3 days.
Overall, total numbers of non-psychi-Overall, total numbers of non-psychi-
atric hospital days per 1000 patients peratric hospital days per 1000 patients per
annum were 492 for those in institutionalannum were 492 for those in institutional
care, 1270 for those in residential carecare, 1270 for those in residential care
and 1200 for the ex-institutional patients.and 1200 for the ex-institutional patients.
Psychiatric illness and activityPsychiatric illness and activity
Of those patients we identified with learn-Of those patients we identified with learn-
ing disability, 263 (16.5%) were identifieding disability, 263 (16.5%) were identified
as having had a contact within secondaryas having had a contact within secondary
care (in- or out-patient) involving a primarycare (in- or out-patient) involving a primary
or secondary diagnosis of psychiatric ill-or secondary diagnosis of psychiatric ill-
ness. Psychiatric comorbidity was moreness. Psychiatric comorbidity was more
prevalent among the ex-institutional groupprevalent among the ex-institutional group
(42.1%) than among those in institutional(42.1%) than among those in institutional
care (11.3%) or community care (15.6%).care (11.3%) or community care (15.6%).
Table 2 shows the admission rate perTable 2 shows the admission rate per
1000 population for a primary ICD±101000 population for a primary ICD±10
diagnosis of psychiatric illness. Patientsdiagnosis of psychiatric illness. Patients
3838
Fig. 1Fig. 1 Estimated period prevalence of learning disability by age and gender. -Estimated period prevalence of learning disability by age and gender. ---&&---, m a le ; --, male; ---**--- , fem ale.-, female.
HEALTH C ARE PROVISION FOR PEOPLE WITH A LEARNING DISABILITYHEALTH CARE PROVISION FOR PEOPLE WITH A LEARNING DISABILITY
with learning disability accounted for 246with learning disability accounted for 246
(1.37%) of all psychiatric in-patient(1.37%) of all psychiatric in-patient
admissions and 341 (0.8%) of all out-admissions and 341 (0.8%) of all out-
patient appointments.patient appointments.
Mental handicap servicesMental handicap services
There were a total of 490 FCEs in the learn-There were a total of 490 FCEs in the learn-
ing disability speciality with an admissioning disability speciality with an admission
dated after 31 March 1991. Of these, 198dated after 31 March 1991. Of these, 198
involved patients resident in the long-stayinvolved patients resident in the long-stay
institution. These admissions thereforeinstitution. These admissions therefore
represent either initial admissions orrepresent either initial admissions or
readmissions from an acute care provider.readmissions from an acute care provider.
Patients who had previously been dis-Patients who had previously been dis-
charged from the long-stay learningcharged from the long-stay learning
disability institution generated 113 admis-disability institution generated 113 admis-
sions,sions, an annual admission rate of 212 peran annual admission rate of 212 per
1000 patients. This compares with an ad-1000 patients. This compares with an ad-
mission rate of 18 per 1000 for those com-mission rate of 18 per 1000 for those com-
munity patients never resident in themunity patients never resident in the
institution. Mean lengths of stay for theseinstitution. Mean lengths of stay for these
two groups were 285 days and 114 daystwo groups were 285 days and 114 days
respectively.respectively.
DISCUSSIONDISCUSSION
MethodologyMethodology
By using record-linkage techniques, weBy using record-linkage techniques, we
identified a population with learning dis-identified a population with learning dis-
ability in one health district. Such methodsability in one health district. Such methods
can be used for a wide range of diseasecan be used for a wide range of disease
groups, but their success depends on thegroups, but their success depends on the
likelihood of relevant patients coming intolikelihood of relevant patients coming into
contact with the services from which thecontact with the services from which the
data are collected and on the accuracydata are collected and on the accuracy
and thoroughness of coding. By using aand thoroughness of coding. By using a
wide range of sources from both healthwide range of sources from both health
and social services, we believe that we iden-and social services, we believe that we iden-
tified the large majority of the learningtified the large majority of the learning
disability population. Our estimate of thedisability population. Our estimate of the
prevalence of learning disability is higherprevalence of learning disability is higher
than that previously reported for the Citythan that previously reported for the City
of Cardiff (Humphreysof Cardiff (Humphreys et alet al, 1981). This, 1981). This
is due in part to the use of a wider rangeis due in part to the use of a wider range
of health service data than in the previousof health service data than in the previous
study. Our figures are comparable withstudy. Our figures are comparable with
those recorded across a wide range ofthose recorded across a wide range of
Western European and North AmericanWestern European and North American
populations (McClaren & Bryson, 1987).populations (McClaren & Bryson, 1987).
Our methods may have underestimatedOur methods may have underestimated
the prevalence of learning disability in thethe prevalence of learning disability in the
younger age groups. This is because oneyounger age groups. This is because one
of our data sources (the learning disabilityof our data sources (the learning disability
data set) was for adults only, while anotherdata set) was for adults only, while another
(the social services data set) was skewed(the social services data set) was skewed
towards adult patients. Our study may alsotowards adult patients. Our study may also
have been less sensitive to mild or border-have been less sensitive to mild or border-
line learning disability defined by IQ.line learning disability defined by IQ.
Relationship with social deprivationRelationship with social deprivation
We report a positive correlation betweenWe report a positive correlation between
prevalence of learning disability and socialprevalence of learning disability and social
deprivation. This correlation may bedeprivation. This correlation may be
explained largely by a concentration ofexplained largely by a concentration of
social care homes within less affluent areas.social care homes within less affluent areas.
However, the relationship is also apparentHowever, the relationship is also apparent
(although weaker) in the younger age groups(although weaker) in the younger age groups
where patients will be resident within thewhere patients will be resident within the
family home. This may indicate the pre-family home. This may indicate the pre-
sence of aetiogical factors associated withsence of aetiogical factors associated with
social deprivation that predict learningsocial deprivation that predict learning
disability, although there must be doubtdisability, although there must be doubt
over the direction of causality. Caring forover the direction of causality. Caring for
a patient with learning disability may in-a patient with learning disability may in-
volve financial hardships and consequentvolve financial hardships and consequent
social drift. These areas demand furthersocial drift. These areas demand further
exploration.exploration.
Utilisation of non-psychiatricUtilisation of non-psychiatric
health serviceshealth services
Overall, patients with learning disabilityOverall, patients with learning disability
are not excessive users of non-psychiatricare not excessive users of non-psychiatric
in-patient care in terms of number ofin-patient care in terms of number of
admissions or length of stay, although thereadmissions or length of stay, although there
is considerable variation by speciality.is considerable variation by speciality.
Learning disability patients tend to useLearning disability patients tend to use
more medical beds than other patients butmore medical beds than other patients but
have less uptake within the surgical spe-have less uptake within the surgical spe-
cialities. The first fact may reflect a greatercialities. The first fact may reflect a greater
prevalence of certain conditions such asprevalence of certain conditions such as
epilepsy in the learning disability popu-epilepsy in the learning disability popu-
lation, while the reduction in surgical carelation, while the reduction in surgical care
may be partly explained by reduced uptakemay be partly explained by reduced uptake
of obstetric and gynaecological care (seeof obstetric and gynaecological care (see
Table 1). The lower mean length of stay,Table 1). The lower mean length of stay,
as compared with the general population,as compared with the general population,
appears to be counter-intuitive in a popu-appears to be counter-intuitive in a popu-
lation with high morbidity.lation with high morbidity.
Patients in institutional care are likelyPatients in institutional care are likely
to endure greater morbidity than thoseto endure greater morbidity than those
cared for in the community (Corbett,cared for in the community (Corbett,
3939
Fig. 2Fig. 2 Age-standardised prevalence of the learning disability by deprivation of district ward.Age-standardised prevalence of the learning disability by deprivation of district ward.
Fig. 3Fig. 3 Admission rate per annum for patients with and without learning disability for medical and surgicalAdmission rate per annum for patients with and without learning disability for medical and surgical
specialities. -specialities. ---^^---, learning disability medicine; --, learning disability medicine; ---&&---, learning disability surgery; --, learning disability surgery; ---~~---, non-learning disability-, non-learning disability
medicine; -medicine; ---
XX
---, non-learning disability surgery.-, non-learning disability surgery.
MORGAN ET ALMORGAN E T AL
1979; McGrother1979; McGrother et alet al, 1996; McDermott, 1996; McDermott
et alet al, 1997), yet this is not reflected in acute, 1997), yet this is not reflected in acute
hospital usage. Overall admissions are simi-hospital usage. Overall admissions are simi-
lar, although length of stay for the hospitallar, although length of stay for the hospital
residents is significantly shorter. It seemsresidents is significantly shorter. It seems
likely that a degree of acute medical carelikely that a degree of acute medical care
is provided within these institutions, redu-is provided within these institutions, redu-
cing the length of stay in other hospitals.cing the length of stay in other hospitals.
Our data therefore provide evidence for aOur data therefore provide evidence for a
`hidden service' provided by long-stay`hidden service' provided by long-stay
learning disability institutions that may belearning disability institutions that may be
lost with the shift towards community-lost with the shift towards community-
based care ± a finding which appears tobased care ± a finding which appears to
be contradicted by the experience of thebe contradicted by the experience of the
ex-institutional patients, who also haveex-institutional patients, who also have
fewer emergency admissions. However, thisfewer emergency admissions. However, this
population is frequently readmitted, forpopulation is frequently readmitted, for
considerable periods, into the long-stayconsiderable periods, into the long-stay
learning disability hospital, which againlearning disability hospital, which again
may offer acute care.may offer acute care.
Psychiatric comorbidityPsychiatric comorbidity
The data on psychiatric comorbidity `dualThe data on psychiatric comorbidity `dual
diagnosis' are interesting: 16.5% of thediagnosis' are interesting: 16.5% of the
learning disability population have con-learning disability population have con-
tacts coded for psychiatric diagnosis.tacts coded for psychiatric diagnosis.
While our figures are not synonymous withWhile our figures are not synonymous with
prevalence across the full range of diagnosisprevalence across the full range of diagnosis
for severe psychiatric illness, which onefor severe psychiatric illness, which one
would expectwould expect to lead to admission withinto lead to admission within
a seven-year period, they represent a proxya seven-year period, they represent a proxy
for prevalence. In fact, our estimate offor prevalence. In fact, our estimate of
the prevalence of schizophrenia of 30.1the prevalence of schizophrenia of 30.1
per 1000 compares with other publishedper 1000 compares with other published
figures in the learning disability populationfigures in the learning disability population
(Doody(Doody et alet al, 1998)., 1998).
Psychiatric care contact is alsoPsychiatric care contact is also
influenced by this `institutional' factor. Thisinfluenced by this `institutional' factor. This
factor is striking in connection withfactor is striking in connection with
admission to learning disability psychiatry,admission to learning disability psychiatry,
with high rates for the recently dischargedwith high rates for the recently discharged
4040
Table 1Ta b l e 1 Admissions and length of stay (LOS) for the main specialities for patients with and without learningAdmissions and length of stay (LOS) for the main specialities for patients with and without learning
disabilitydisability
SpecialitySpeciality Learning disability patientsLearning disability patients Non-learning-disability patientsNon-learning-disability patients
AdmissionsAdmissions Mean LOS (days)Mean LOS (days) AdmissionsAdmissions Mean LOS (days)Mean LOS (days)
General surgeryGeneral surgery 263263 3.623.62 67 09767 097 4.424.42
UrologyUrology 5555 3.273.27 20 94320 943 3.153.15
Trauma and orthopaedicTrauma and orthopaedic 183183 7.217.21 3765937 659 7.137.13
Ear, nose and throatEar, nose and throat 9393 1.491.49 19 71319 713 1.971.97
OphthalmologyOphthalmology 5959 1.831.83 14 83814 838 1.521.52
Oral surgeryOral surgery 118118 1.491.49 75327532 1.231.23
Restorative dentistryRestorative dentistry 1010 0.000.00 8787 0.360.36
Paediatric dentistryPaediatric dentistry 138138 0.020.02 83348334 0.000.00
OrthodonticsOrthodontics 00^^7070 0.000.00
NeurosurgeryNeurosurgery 1717 10.5910.59 26682668 11.3411.34
Plastic surgeryPlastic surgery 2323 4.174.17 41274127 5.745.74
Cardiothoracic surgeryCardiothoracic surgery 8826.0026.00 19861986 11.2911.29
Paediatric surgeryPaediatric surgery 5050 2.322.32 70527052 1.721.72
Accident and emergencyAccident and emergency 111.001.00 152152 0.910.91
AnaestheticsAnaesthetics 1414 0.710.71 28482848 0.100.10
General medicineGeneral medicine 633633 4.224.22 85 44285 442 5.145.14
GastroenterologyGastroenterology 00^^1111 2.452.45
HaematologyHaematology 186186 1.541.54 20 91220 912 1.071.07
Clinical pharmacologyClinical pharmacology 00^^4412.2512.25
RehabilitationRehabilitation 6633.3333.33 10 101010 30.2930.29
Palliative medicinePalliative medicine 00^^6363 9.899.89
CardiologyCardiology 1010 4.404.40 93259325 3.673.67
DermatologyDermatology 3232 9.229.22 10 99610 996 2.422.42
Thoracic medicineThoracic medicine 9595 5.875.87 19 61219 612 5.305.30
NeurologyNeurology 1616 29.1329.13 22482248 13.3913.39
RheumatologyRheumatology 00^^17171717 6.956.95
PaediatricsPaediatrics 385385 3.993.99 39 53139 531 2.802.80
Paediatric neurologyPaediatric neurology 7575 3.873.87 587587 3.703.70
Geriatric medicineGeriatric medicine 8181 18.0618.06 31 07731 077 25.8225.82
ObstetricsObstetrics 4040 1.901.90 56 91656 916 2.542.54
GynaecologyGynaecology 4949 1.881.88 52 83752 837 1.661.66
Obstetrics (antenatal)Obstetrics (antenatal) 00^^3232 2.722.72
GP maternityGP maternity 00^^ 48784878 2.012.01
GP (other)GP (other) 1414 11.1411.14 36193619 12.1612.16
RadiotherapyRadiotherapy 2424 3.423.42 16 93616 936 2.402.40
Others/uncodedOthers/uncoded 00^^ 48714871 ^^
TotalTotal 26782678 557 730557 730
Table 2Ta b l e 2 Prevalence and admission rates for psychiatric disorders for patients with learning disabilityPrevalence and admission rates for psychiatric disorders for patients with learning disability
ICD^10 codeICD^10 code ICD^10 chapter subheadingICD^10 chapter subheading PatientsPatients
((nn))
PrevalencePrevalence
per 1000per 1000
Average admissionAverage admission
rate per annum perrate per annum per
1000 population1000 population
F00^F09F00^F09
F10^F19F10^F19
F20^F29F20^F29
F30^F39F30^F39
F40^F49F40^F49
F50^F59F50^F59
F60^F69F60^F69
F80^F89F80^F89
F90^F98F90^F98
Organic including symptomatic mental disordersOrganic including symptomatic mental disorders
Mental and behavioural disorders due to psychoactive substance useMental and behavioural disorders due to psychoactive substance use
Schizophrenia, schizotypal and delusional disordersSchizophrenia, schizotypal and delusional disorders
Mood (affective disorders)Mood (affective disorders)
Neurotic, stress-related and somatoform disordersNeurotic, stress-related and somatoform disorders
Behavioural syndromes associated with physiological disturbances and physical factorsBehavioural syndromes associated with physiological disturbances and physical factors
Disorders of adult personality and behaviourDisorders of adult personality and behaviour
Disorders of psychological developmentDisorders of psychological development
Behavioural and emotional disorders with onset usually occurring in childhood and adolescenceBehavioural and emotional disorders with onset usually occurring in childhood and adolescence
1515
1414
5050
3838
5656
22
3232
4646
1717
9.49.4
8.88.8
31.331.3
23.823.8
35.135.1
1.31.3
20.120.1
28.828.8
10.710.7
2.02.0
1.41.4
7.57.5
2.62.6
3.23.2
0.20.2
1.71.7
1.51.5
1.11.1
HEALTH C ARE PROVISION FOR PEOPLE WITH A LEARNING DISABILITYHEALTH CARE PROVISION FOR PEOPLE WITH A LEARNING DISABILITY
institutional patients. Patients with a learn-institutional patients. Patients with a learn-
ing disability will continue to need acuteing disability will continue to need acute
psychiatric service following the closure ofpsychiatric service following the closure of
the institution.the institution.
The health care uptake of people with aThe health care uptake of people with a
learning disability is different from that oflearning disability is different from that of
the general population. The spread of speci-the general population. The spread of speci-
ality contact appears to reflect the needs ofality contact appears to reflect the needs of
this group. The presence of a learning dis-this group. The presence of a learning dis-
ability institution had a significant influ-ability institution had a significant influ-
ence on health provision; it remains to beence on health provision; it remains to be
seen whether other services will absorb thisseen whether other services will absorb this
function after closure.function after closure.
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`Pfropfschizphrenie' revisited. Schizophrenia in`Pfropfschizphrenie' revisited. Schizophrenia in
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PsychiatryPsychiatry,, 173173,145^153.,145^153.
Gill, L., Goldacre, M., Simmons, H.,Gill, L., Goldacre, M., Simmons, H., et alet al (19 9 3)(19 93)
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administrative prevalence of mental handicap in the Cityadministrative prevalence of mental handicap in the City
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Kerr, M.Kerr, M. (1998)(19 9 8) Primary health care and health gain forPrimary health care and health gain for
people with a learning disability.people with a learning disability. Learning DisabilityLearning Disability
ReviewReview,, 33, 6^18., 6^18.
McClaren, J. & Bryson, S. E.McClaren, J. & Bryson, S. E. (1987)(19 87) Review of recentReview of recent
epidemiological studies of mental retardation:epidemiological studies of mental retardation:
prevalence, associated disorders and etiology.prevalence, associated disorders and etiology. AmericanAmerican
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McDermott, S., Platt, T. & Krishnaswami, S.McDermott, S., Platt, T. & Krishnaswami, S. (1997)(19 9 7 )
Are individuals with mental retardation at high risk forAre individuals with mental retardation at high risk for
chronic diseases.chronic diseases. Family MedicineFamily Medicine,, 2929, 429^434., 429^434.
McGrother, C.W., Hauck, A., Bhaumik, S.,McGrother, C.W., Hauck, A., Bhaumik, S., et alet al
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Community needs for adults with learningCommunity needs for adults with learning
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Leicestershire register.Leicestershire register. Journal of Intellectual DisabilityJournal of Intellectual Disability
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Morgan, C. L., Currie, C. J. & Peters, J. R.Morgan, C. L., Currie, C. J. & Peters, J. R. (1997)(19 9 7)
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589^594.589^594.
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Investment in Health Gain: Mental Handicap (LearningInvestment in Health Gain: Mental Handicap (Learning
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Health ProblemsHealth Problems (ICD^9).Geneva: WHO.(ICD^9).Geneva: WHO.
__
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4141
CLINICAL IMPLICATIONSCLINICAL IMPLICATIONS
&&
Social setting and deprivation are associated with varying health uptake forSocial setting and deprivation are associated with varying health uptake for
patients with learning disability.patients with learning disability.
&&
Institutional patients have a lower demand for non-psychiatric health services.TheInstitutional patients have a lower demand for non-psychiatric health services.The
closure of institutions may create a vacuum of health care.closure of institutions may create a vacuum of health care.
&&
Patients with learning disability have an increased uptake of medical and dentalPatients with learning disability have an increased uptake of medical and dental
services but a reduced uptake of surgical specialities.services but a reduced uptake of surgical specialities.
LIMITATIONSLIMITATIONS
&&
Our sample may have been skewed towards the older age groups.Our sample may have been skewed towards the older age groups.
&&
Routine data sources may be prone to inaccurate coding.Routine data sources may be prone to inaccurate coding.
&&
No information concerning severity of learning disability was available.No information concerning severity of learning disability was available.
CHRISTOPHER L. MORGAN, MSc, Department of General Medicine,University Hospital of Wales,Cardiff;CHRISTOPHER L. MORGAN, MSc, Department of General Medicine,University Hospital of Wales,Cardiff;
ZAHIR AHMED, MRCPsych, MICHAEL P. KERR, MRCPsych, Department of Psychological Medicine, UniversityZAHIR AHMED, MRCPsych, MICHAEL P. KERR, MRCPsych, Department of Psychological Medicine, University
of Wales College of Medicine, Cardiffof Wales College of Medicine, Cardiff
Correspondence:Dr Michael Kerr,Department of Psychological Medicine,University Hospitalof Wales,Correspondence:Dr Michael Kerr,Department of Psychological Medicine,University Hospitalof Wales,
Heath Park,Cardiff CF4 4XW.Tel: 029 2069 4033; Fax: 029 2061 0812; e-mail: kerrmpHeath Park,Cardiff CF4 4XW.Tel: 029 2069 4033; Fax: 029 2061 0812; e-mail: kerrmp@@cf.ac.ukcf.ac.uk
(First received10 February 1999, final revision 21September 1999, accepted 21September1999)(First received 10 February 1999, final revision 21September 1999, accepted 21 September 1999)
... 21 People with a learning disability had more complex health needs and required more hospital admissions than those without a learning disability. [22][23][24][25] Comparisons between studies were hampered by different age cohorts and variation in the identification of learning disabilities. Those with a learning disability had a different profile of hospital admissions, including higher rates of medical and dental admissions, with emerging evidence suggesting that this may reflect poorer primary health care. ...
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Aim To describe the profiles of hospital admissions of school‐age children identified with a learning disability (ICD‐11 intellectual developmental disorder) and/or safeguarding needs compared to children without learning disability, in a population where proactive identification of learning disabilities in children is embedded in practice. Method Data were collected about the reasons for and duration of hospital admissions of school‐age children living in the study catchment area between April 2017 and March 2019; the presence (or absence) of learning disability and/or safeguarding flags in the medical record was also noted. The impact of the presence of flags on the outcomes was explored using negative binomial regression modelling. Results Of 46 295 children in the local population, 1171 (2.53%) had a learning disability flag. The admissions of 4057 children were analysed (1956 females; age range 5–16 years, mean 10 years 6 months, SD 3 years 8 months). Of these, 221 out of 4057 (5.5%) had a learning disability, 443 out of 4057 (10.9%) had safeguarding flags, 43 out of 4057 (1.1%) had both, and 3436 out of 4057 (84.7%) had neither. There was a significantly increased incidence of hospital admissions and length of stay in children with either or both flags, compared to children with neither. Interpretation Children with learning disabilities and/or safeguarding needs have higher rates of hospital admissions than children without. Robust identification of learning disabilities in childhood is required to make the needs of this group visible in routinely collected data as the first step towards needs being appropriately addressed. What this paper adds Children with learning disabilities must be consistently identified in populations so that their needs are made visible. Information about these needs must be collected from educational, health, and social care sources and scrutinized systematically. Children with learning disabilities and safeguarding needs have an increased incidence of hospital admissions and length of stay.
... In line with the study of Cooper et al. (2015), we also did not find an effect of socio-economic status on multimorbidity in the ID population, and a similar proportion of adults in our study population resided in the most deprived two postcode deciles (21.1% compared with \ 25.8% found in Cooper et al.'s study). It has been hypothesised that this may reflect their greater likelihood of living in depried areas (Morgan et al. 2000;Cooper et al. 2011). The lack of effect may also reflect the location of residential and supported living accommodation which is not dependent on socio-economic status. ...
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Background Multimorbidity [two or more conditions in addition to intellectual disability (ID)] is known to be more common among people with ID. However, the relationship between multimorbidity and lifestyle factors is currently unknown. The aim of this study was to determine the prevalence of multimorbidity in a population of adults with ID. We also aimed to identify risk factors, including lifestyle factors, for multimorbidity in this population. Methods This was a cross‐sectional analysis using data from a diabetes screening study of 920 adults aged 18–74 years with ID living in Leicestershire, UK. We described comorbidities and the prevalence of multimorbidity in this population. We explored the relationship between multimorbidity and age, gender, ethnicity, severity of ID, socio‐economic status, physical activity, sedentary behaviour, fruit and vegetable consumption and smoking status using multiple logistic regression. Results The prevalence of multimorbidity was 61.2% (95% CI 57.7–64.7). Multimorbidity was independently associated with being female (P < 0.001) and severe/profound ID (P = 0.004). Increasing age was of borderline significance (P = 0.06). Individuals who were physically inactive or sedentary were more likely to be multimorbid, independent of ability to walk, age, gender, severity of ID, ethnicity and socio‐economic status (adjusted OR = 1.91; 95% CI 1.23–2.97; P = 0.004 and OR = 1.98; 95% CI 1.42–2.77; P < 0.001). After excluding probable life‐long conditions (autism spectrum conditions, attention deficit hyperactivity disorders, epilepsy, cerebral palsy and other paralytic syndromes) as contributing comorbidities, the effect of sedentary behaviour, but not physical activity, remained (P = 0.004). We did not observe a relationship between multimorbidity, fruit and vegetable consumption and smoking status. Conclusions Multimorbidity presents a significant burden to people with ID. Individuals who were physically inactive or sedentary were more likely to be multimorbid, but further work is recommended to explore the relationship between multimorbidity and lifestyle factors using standardised objective measures.
... Although some existing research addresses ED visits and hospital admissions among people with ID in general, most of this work is from North America, which may limit its comparability with UK health system data (Morgan et al. 2000;Janicki et al. 2002;Balogh et al. 2005;Venkat et al. 2011). In the United Kingdom, it is thought that about one-quarter of all adults ID are admitted to hospital each year, although whether this is emergency or planned is not specified [National Patient Safety Agency (NPSA) 2004]. ...
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Background Adults with intellectual disabilities (ID) experience a wide range of eating, drinking and/or swallowing (EDS) problems, for which they receive diverse mealtime support interventions. Previous research has estimated that dysphagia (difficulty swallowing) affects 8% of all adults with ID and that 15% require some form of mealtime support. People with ID (whether they require mealtime support or not) also experience a greater burden of ill health and die younger than their peers in the general population with no ID. Methods Using an exploratory, population‐based cohort study design, we set out to examine health‐related outcomes in adults with ID who receive mealtime support for any eating, drinking or swallowing problem, by establishing the annual incidence of healthcare use, EDS‐related ill health, and all‐cause mortality. This study was conducted in two counties in the East of England. Results In 2009, 142 adults with mild to profound ID and a need for any type of mealtime support were recruited for a baseline survey. At follow‐up 1 year later, 127 individuals were alive, eight had died and seven could not be contacted. Almost all participants had one or more consultations with a general practitioner (GP) each year (85–95%) and, in the first year, 20% reportedly had one or more emergency hospitalizations. Although their annual number of GP visits was broadly comparable with that of the general population, one‐fifth of this population's primary healthcare use was directly attributable to EDS‐related ill health. Respiratory infections were the most common cause of morbidity, and the immediate cause of all eight deaths, while concerns about nutrition and dehydration were surprisingly minor. Our participants had a high annual incidence of death (5%) and, with a standardized mortality ratio of 267, their observed mortality was more than twice that expected in the general population of adults with ID (not selected because of mealtime support for EDS problems). Conclusions All Annual Health Checks now offered to adults with ID should include questions about respiratory infections and EDS functioning, in order to focus attention on EDS problems in this population. This has the potential to reduce life‐threatening illness.
... As a consequence of their significant health needs, people with a learning disability are high users of general and specialist health and social care services (Glendinning et al 2001, NHS Health Scotland 2004, including general hospital services (Brown 2005, Gibbs et al. 2008. Epidemiological studies present evidence of differing patterns of use of secondary healthcare services compared to those of the general population, which is seen to have implications for organisation of care and interfaces between acute and primary care services (Morgan et al 2000, Cooper et al 2004, Balogh et al 2005, NHS Quality Improvement Scotland 2006. Specific risks for people with a learning disability associated with general hospital care were identified by the National Patient Safety Agency (2004) and included communication and capacity to consent to treatment issues, risk of choking and aspiration and co-morbid health issues (National Patient Safety Agency 2004). ...
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Objective: To explore and identify the impact of Learning Disability Liaison Nursing (LDLN) Services in NHS Lothian, Forth Valley, Borders and Fife on the healthcare experiences of people with a learning disability attending for general hospital care. Design: A mixed methods design was employed that included analysis of all referrals to the four liaison services over an 18 month period and semi-structured interviews with key stakeholder groups who had all had contact with the Liaison Service. Participants There were 323 individual referrals to the four liaison services over the 18 month period. 85 people across the 4 health boards were involved in either focus groups or semi-structured interviews and these included adults with a learning disability (n=5), carers (n=16), primary care (n=39) and general hospital (n=19) staff from all disciplines and the liaison nurses themselves (n=6). Results: Referral patterns demonstrated strong association to the known distinct health needs of the learning disability population (e.g. gastro-intestinal, respiratory and neurological conditions). The LDLN role is complex and impacts on (i) clinical care, (ii) education and practice development and (iii) strategic developments. The Learning Disability Liaison Nurses (LDLN) primarily focused on information sharing and other indirect aspects of patient care, rather than delivering direct care. Key aspects of the LDLN role that led to positive outcomes for all stakeholders included Adults with Incapacity issues, fostering reasonable (and achievable) adjustments to care, augmenting communication and acting as a role model. Conclusions: The LDLN services in this study were highly valued by all stakeholders through contributing to achieving person centred outcomes. The liaison nurses have an important role in raising the profile and status of people with a learning disability in general hospitals. Their expert knowledge and skills impact on the development of effective systems and processes and contribute to improving the patient experience. There is a need to take account of the complex and multidimensional nature of the LDLN role and the possible tensions that can exist between achieving clinical outcomes, education and practice developments and organisational strategic developments within the resource allocated to each service. The results from this study highlight the importance of the ongoing development, promotion and awareness of the LDLN service and the challenges in delivering the complex elements of the role. The Research Team The research was undertaken by the Lothian Learning Disability Research Group which involves collaboration between The Centre for Research and Families and Relationships (CRFR), University of Edinburgh, The Faculty of Health, Life & Social Science, Edinburgh Napier University and NHS Lothian.
... There are few recent studies about emergency hospital usage by adults with ID. 138 In England, the only previous national study, by Glover and Evison, 13 used earlier hospital data from 2005-9 and, although large, it relied solely on the identification of ID from hospital data. Using the linked data sets in our study, we estimated that approximately one in three adults with ID who has an emergency admission in England does not have ID recorded anywhere on his or her hospital record. ...
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Background People with intellectual disability (ID) have poorer health than the general population; however, there is a lack of comprehensive national data describing their health-care needs and utilisation. Annual health checks for adults with ID have been incentivised through primary care since 2009, but only half of those eligible for such a health check receive one. It is unclear what impact health checks have had on important health outcomes, such as emergency hospitalisation. Objectives To evaluate whether or not annual health checks for adults with ID have reduced emergency hospitalisation, and to describe health, health care and mortality for adults with ID. Design A retrospective matched cohort study using primary care data linked to national hospital admissions and mortality data sets. Setting A total of 451 English general practices contributing data to Clinical Practice Research Datalink (CPRD). Participants A total of 21,859 adults with ID compared with 152,846 age-, gender- and practice-matched controls without ID registered during 2009–13. Interventions None. Main outcome measures Emergency hospital admissions. Other outcomes – preventable admissions for ambulatory care sensitive conditions, and mortality. Data sources CPRD, Hospital Episodes Statistics and Office for National Statistics. Results Compared with the general population, adults with ID had higher levels of recorded comorbidity and were more likely to consult in primary care. However, they were less likely to have long doctor consultations, and had lower continuity of care. They had higher mortality rates [hazard ratio (HR) 3.6, 95% confidence interval (CI) 3.3 to 3.9], with 37.0% of deaths classified as being amenable to health-care intervention (HR 5.9, 95% CI 5.1 to 6.8). They were more likely to have emergency hospital admissions [incidence rate ratio (IRR) 2.82, 95% CI 2.66 to 2.98], with 33.7% deemed preventable compared with 17.3% in controls (IRR 5.62, 95% CI 5.14 to 6.13). Health checks for adults with ID had no effect on overall emergency admissions compared with controls (IRR 0.96, 95% CI 0.87 to 1.07), although there was a relative reduction in emergency admissions for ambulatory care-sensitive conditions (IRR 0.82, 95% CI 0.69 to 0.99). Practices with high health check participation also showed a relative fall in preventable emergency admissions for their patients with ID, compared with practices with minimal participation (IRR 0.73, 95% CI 0.57 to 0.95). There were large variations in the health check-related content that was recorded on electronic records. Limitations Patients with milder ID not known to health services were not identified. We could not comment on the quality of health checks. Conclusions Compared with the general population, adults with ID have more chronic diseases and greater primary and secondary care utilisation. With more than one-third of deaths potentially amenable to health-care interventions, improvements in access to, and quality of, health care are required. In primary care, better continuity of care and longer appointment times are important examples that we identified. Although annual health checks can also improve access, not every eligible adult with ID receives one, and health check content varies by practice. Health checks had no impact on overall emergency admissions, but they appeared influential in reducing preventable emergency admissions. Future work No formal cost-effectiveness analysis of annual health checks was performed, but this could be attempted in relation to our estimates of a reduction in preventable emergency admissions. Funding The National Institute for Health Research Health Services and Delivery Research programme.
... There are few recent studies of emergency hospital use by adults with intellectual disabilites. 19 In England, the only previous large-scale national study (2005)(2006)(2007)(2008)(2009)) relied solely on the identification of intellectual disabilities from hospital data. 8 We estimate that approximately 1 in 3 intellectually disabled adults who have an emergency admission in England will not have their disability recorded, and this lapse may explain the small differences in crude ACSC admission rates (intellectual disabilities: 76 per 1,000 per year vs 61 in this study), as milder cases of disability are less likely to be recorded in hospital data. ...
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Purpose: Adults with intellectual disabilities experience poorer physical health and health care quality, but there is limited information on the potential for reducing emergency hospital admissions in this population. We describe overall and preventable emergency admissions for adults with vs without intellectual disabilities in England and assess differences in primary care management before admission for 2 common ambulatory care-sensitive conditions (ACSCs). Methods: We used electronic records to study a cohort of 16,666 adults with intellectual disabilities and 113,562 age-, sex-, and practice-matched adults without intellectual disabilities from 343 English family practices. Incident rate ratios (IRRs) from conditional Poisson regression were analyzed for all emergency and preventable emergency admissions. Primary care management of lower respiratory tract infections and urinary tract infections, as exemplar ACSCs, before admission were compared in unmatched analysis between adults with and without intellectual disabilities. Results: The overall rate for emergency admissions for adults with vs without intellectual disabilities was 182 vs 68 per 1,000 per year (IRR = 2.82; 95% CI, 2.66-2.98). ACSCs accounted for 33.7% of emergency admissions among the former compared with 17.3% among the latter (IRR = 5.62; 95% CI, 5.14-6.13); adjusting for comorbidity, smoking, and deprivation did not fully explain the difference (IRR = 3.60; 95% CI, 3.25-3.99). Although adults with intellectual disability were at nearly 5 times higher risk for admission for lower respiratory tract infections and urinary tract infections, they had similar primary care use, investigation, and management before admission as the general population. Conclusions: Adults with intellectual disabilities are at high risk for preventable emergency admissions. Identifying strategies for better detecting and managing ACSCs, including lower respiratory and urinary tract infections, in primary care could reduce hospitalizations.
... This differs from findings in the general population and may reflect the complexity of the lives of adults with intellectual disabilities. Both children and adults with intellectual disabilities are known to be more likely to live in more deprived areas (Cooper et al., 2011;Emerson, Graham, & Hatton, 2006;Morgan, Ahmed, & Kerr, 2000) but neighbourhood deprivation has not been associated with ill health, perhaps due to complexities of size and location of housing stock for supported tenancies, and influences of family of origin as well as paid carers (Cooper et al., 2011). Area deprivation has also been reported to not influence access to social supports, daytime primary health care services or hospital admissions amongst people with intellectual disabilities (Cooper et al., 2011 ...
Article
Background: In the UK, general practitioners/family physicians receive pay for performance on management of long-term conditions, according to best-practice indicators. Method: Management of long-term conditions was compared between 721 adults with intellectual disabilities and the general population (n = 764,672). Prevalence of long-term conditions was determined, and associated factors were investigated via logistic regression analyses. Results: Adults with intellectual disabilities received significantly poorer management of all long-term conditions on 38/57 (66.7%) indicators. Achievement was high (75.1%-100%) for only 19.6% of adults with intellectual disabilities, compared with 76.8% of the general population. Adults with intellectual disabilities had higher rates of epilepsy, psychosis, hypothyroidism, asthma, diabetes and heart failure. There were no clear associations with neighbourhood deprivation. Conclusions: Adults with intellectual disabilities receive poorer care, despite conditions being more prevalent. The imperative now is to find practical, implementable means of supporting the challenges that general practices face in delivering equitable care.
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Review of recent epidemiological studies of mental retardation: prevalence, associated disorders and etiology
  • McClaren