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Health characteristics and consultation patterns of people with intellectual disability: a cross-sectional database study in English general practice

Health characteristics and consultation patterns of people with intellectual disability: a... People with intellectual disability (ID) (used people with ID in the UK is limited, and the in this article in preference to the term need to improve the available data has been Background ‘learning disability’ except where reference recently reinforced. People with intellectual disability (ID) are a group with high levels of healthcare needs; In this study, the authors used the is made to specific initiatives such as the however, comprehensive information on these data from a large primary care database Quality and Outcomes Framework [QOF]) needs and service use is very limited. in England to describe chronic disease, are known to have greater healthcare needs 1,2 Aim with high levels of premature mortality. comorbidity, disability, and general practice To describe chronic disease, comorbidity, The 2013 confidential inquiry into premature use for adults with ID, and compare these disability, and general practice use among people deaths of people with ID in England reported to the general population. Specifically, with ID compared with the general population. a greater burden of potentially avoidable consultation length and continuity of care Design and setting deaths that may be prevented with good- were examined because they are potentially This study is a cross-sectional analysis of a quality health care. important adjustments for improving primary care database including 408 English Concerns over the quality of health care primary care experience for people with ID. general practices in 2012. received by people with ID have led to a Method METHOD number of initiatives in primary care in the A total of 14 751 adults with ID, aged past 10 years. These include: the adoption Data source 18–84 years, were compared with 86 221 age-, sex- and practice-matched controls. Depending of learning disability as a clinical domain The Clinical Practice Research Datalink on the outcome, prevalence (PR), risk (RR), or in the QOF in 2006; an annual Health (CPRD) is a large, validated primary odds (OR) ratios comparing patients with ID Check Scheme introduced in 2009; and care database that has been collecting with matched controls are shown. the adoption of ID as a clinical priority by anonymous patient data from participating Results 5 the Royal College of General Practitioners UK general practices since 1987. It Patients with ID had a markedly higher in 2010. In addition, all primary care is includes a longitudinal medical record for prevalence of recorded epilepsy (18.5%, PR25.33, required by statute to make reasonable all registered patients. 95% confidence interval [CI] = 23.29 to 27.57), severe mental illness (8.6%, PR 9.10, 95% adjustments to ensure that the needs of CI = 8.34 to 9.92), and dementia (1.1%, PR7.52, people with ID are met. Identification of patients with intellectual 95% CI = 5.95 to 9.49), as well as moderately Despite these initiatives, there is a disability and matched controls increased rates of hypothyroidism and heart continuing paucity of population-based To identify people with ID, the authors failure (PR>2.0). However, recorded prevalence of ischaemic heart disease and cancer was information on the health of people with searched for any code used by the QOF approximately 30% lower than the general ID because their experiences are not for learning disability and codes for population. The average annual number of routinely reported in national primary care, conditions usually associated with ID, primary care consultations was 6.29 for patients hospital, and mortality data. Specifically, such as chromosomal and metabolic with ID, compared with 3.89 for matched controls. Patients with ID were less likely to have longer comprehensive primary care information disorders. This approach identified 21 859 doctor consultations (OR 0.73, 95% CI = 0.69 to 0.77), and had lower continuity of care with the same doctor (OR 0.77, 95% CI = 0.73 to 0.82). Conclusion IM Carey, MSc, PhD, lecturer in epidemiology and Address for correspondence Compared with the general population, people medical statistics; DG Cook, MSc, PhD, professor of Iain Carey, St George’s University of London, with ID have generally higher overall levels of epidemiology; SM Shah, MSc, FFPH, senior lecturer Population Health Research Institute, Cranmer chronic disease and greater primary care use. in public health; FJ Hosking, MSc, PhD, research Terrace, Tooting, London SW17 0RE, UK. Ensuring access to high-quality chronic disease fellow; S DeWilde, MD, FRCGP, GP and senior E-mail: [email protected] management, especially for epilepsy and mental illness, will help address these greater lecturer in primary care epidemiology; T Harris, Submitted: 3 April 2015; Editor’s response: 5 June healthcare needs. Continuity of care and longer MSc, MD, MRCGP, GP and reader in primary care, 2015; final acceptance: 24 July 2015. appointment times are important potential Population Health Research Institute, St George’s, ©British Journal of General Practice improvements in primary care. University of London, London. C Beighton, MSc, This is the full-length article (published online RNLD, honorary research associate, Faculty of 24 Feb 2016) of an abridged version published in Keywords Heath Social Care and Education, Kingston and print. Cite this article as: Br J Gen Pract 2016; chronic disease; continuity of care; intellectual St George’s, University of London, London. DOI: 10.3399/bjgp16X684301 disability; learning disabilities; primary care. e264 British Journal of General Practice, April 2016 The authors searched for any evidence that people with ID were living in a communal How this fits in setting by looking for specific Read Codes or Although a number of initiatives in primary the presence of three or more people with ID care have addressed the need to improve with the same address flag, indicating that the health of people with intellectual they were living at the same address. disability (ID), there is limited information on their healthcare needs and general Definition of consultation practice use. Practices, for their part, are The aim was to identify unique events expected to make reasonable adjustments to improve access to care for people with where the patient was seen or telephoned ID. Additionally, the high prevalence of by a doctor or nurse. To achieve this in the epilepsy and severe mental health problems CPRD, the search was restricted to events in people with ID requires effective access where the consultation type (for example, to specialist advice. Improving continuity of surgery consultation) and staff member (for care and access to longer appointments are example, senior partner) met the study’s therefore important potential improvements definition, excluding administrative events in primary care. The results of this study will and repeat prescribing. For patients with ID, be helpful in planning and modifying general practice to meet the needs of people with ID consultations on days where a health check and address concerns over the high level of was recorded were excluded. potentially avoidable mortality. For face-to-face consultations with a doctor, consultation length was classified into standard (1–10 minutes) and long (>10 minutes), excluding a small number of adults (aged ≥18 years) registered in 451 zero-length consultations. As each clinician English practices for at least 1 day between has a unique identifier on the system, 1 January 2009 and 31 March 2013. These continuity of care could be estimated by individuals were matched based on age calculating the highest proportion of doctor and sex from the same practice, with up to consultations with the same doctor. A cut-off seven controls with no record of ID. of >50% was used to summarise continuity; This cross-sectional analysis reports on a if a patient had a total of five consultations, subset of 408 practices that were providing they would need at least three with the same high-quality data on 1 January 2012. A total doctor to achieve this. Although other indices of 14 751 people with ID aged 18–84 years of continuity have been proposed, this who had been registered for at least 30 days summary has the advantage of being largely on the 1 January 2012 date were included, independent of number of consultations. along with 86 221 matched controls. Table 1. Characteristics Statistical analysis of adults with intellectual Recording of chronic disease and Depending on the outcome, prevalence disability disability (PR), odds (OR), or relative risk (RR) ratios The QOF disease registers from the UK between patients with ID and their matched Characteristic n % general practice contract were used to controls were calculated using conditional All 14 751 100.0 define chronic disease. For each condition, Poisson and logistic models (Stata version Female 6216 42.1 the authors searched for the presence of 13). For PRs, Poisson models were fitted Male 8535 57.9 any Read Code in the medical record up to with robust error-variance corrections Age, years 1 January 2012 to allow the description of to provide reliable estimates. Where the prevalence or, more precisely, cumulative outcome was the number of consultations 18–34 5365 36.3 incidence. For asthma, epilepsy, and over the previous year, an offset for the 35–54 6041 41.0 hypothyroidism, in line with the QOF number of registered days was added to the 55–84 3345 22.6 definitions, a recent prescription was Poisson model, to allow for patients who had On QOF LD register 12 862 87.2 also required to give a measure of period been registered for less than a year. In the Down’s syndrome 1571 10.7 prevalence. Severe mental illness was consultation analyses, the data were further subdivided into schizophrenia and affective adjusted for comorbidity using a weighted Autism spectrum disorder 1512 10.3 disorder; anxiety was defined as an score of QOF conditions. For analyses on Communal setting 3138 21.3 additional condition. consultation length and continuity, the data Registered, years For disability, the authors identified were also adjusted for the total number of <1 1037 7.0 whether an assessment of mobility, consultations. 1–5 2945 20.0 continence (after age 12 years), and hearing >5 10 769 73.0 was ever recorded by 1 January 2012 and RESULTS whether a problem was noted. For vision, Characteristics of people with intellectual Registered on 1 January 2012 for at least 30days. behavioural problems, and constipation, the disability LD = learning disability. QOF = Quality and authors identified recording of a problem The ID group had an average age of Outcomes Framework. ever having occurred. 42.1 years (standard deviation 15.7) and British Journal of General Practice, April 2016 e265 57.9% were male (Table 1). Based on the (8.6%, PR 9.1, 95% CI = 8.34 to 9.92), and total registered population of the included dementia (1.1%, PR 7.5, 95% CI = 5.95 to practices, the estimated prevalence of 9.49). In communal settings, the prevalence identified ID was 54 per 10 000 patients; of epilepsy (27.8%) and severe mental illness 87.2% of the sample were on their practices’ (12.6%) was higher (data not shown). QOF registers for ID. People with ID experienced a moderately About 1 in 10 of the patients with ID increased risk of hypothyroidism and heart was recorded as having Down’s syndrome. failure (PR>2.0). Also significantly higher Similarly, 1 in 10 had an additional diagnosis in patients with ID (PR 1.5–2.0), were of autistic spectrum disorder. About one-fifth stroke, diabetes, chronic kidney disease, of patients with ID (21.3%) were identified as and osteoporosis. However, the recorded living within a communal setting. prevalence of ischaemic heart disease and cancer was approximately 30% lower than Chronic disease prevalence in the general population. The pattern of chronic disease is summarised A count of the number of chronic in Table 2. Compared to general population conditions per patient confirmed the controls, people with ID had a markedly greater likelihood of multiple comorbidities higher prevalence of recorded epilepsy in people with ID, with 22.9% having ≥2 (18.5%, PR 25.3, 95% confidence interval recorded conditions compared with 13.3% [CI] = 23.29 to 27.57), severe mental illness of the control group. Problems with daily living Table 3 summarises the prevalence of Table 2. Prevalence of chronic disease disability in people with ID: 41.4% of people with ID had a record of mobility status, Intellectual disability Controls with 11.4% overall reporting some form ( n = 14 751) (n = 86 221) Prevalence ratio of difficulty, compared to very little (<1%) Disease n % n % (95% CI) recording in the controls. For hearing and Epilepsy 2731 18.5 633 0.7 25.33 (23.29 to 27.57) vision, 4.7% of people with ID had a record of Severe mental illness 1266 8.6 823 1.0 9.10 (8.34 to 9.92) bilateral visual loss or low vision, and 8.3% Schizophrenia 995 6.8 591 0.7 9.94 (8.99 to 10.99) had a record of severe hearing problems; all higher than the control population. Affective disorder 371 2.5 333 0.4 6.66 (5.73 to 7.73) Bowel continence problems were recorded IHD 244 1.7 2316 2.7 0.65 (0.57 to 0.74) for 3.9%, urinary continence problems for Heart failure 121 0.8 324 0.4 2.26 (1.84 to 2.78) 11.9%, and constipation for 22.9%; 14.1% of Stroke and TIA 267 1.8 944 1.1 1.74 (1.52 to 1.98) people with ID had a recorded behavioural Atrial fibrillation 122 0.8 821 1.0 0.91 (0.75 to 1.09) problem in the last 5 years. The recording of Hypertension 1583 10.7 10 416 12.1 0.93 (0.89 to 0.98) all these conditions was considerably lower in the control population. Levels of disability Peripheral vascular disease 61 0.4 423 0.5 0.90 (0.69 to 1.17) were higher among those identified living Chronic kidney disease 468 3.2 1746 2.1 1.64 (1.49 to 1.82) in communal settings with 21.4% with a Diabetes 1017 6.9 3786 4.4 1.64 (1.53 to 1.75) recorded mobility problem, 19.9% with a Hypothyroidism 1169 7.9 2649 3.1 2.69 (2.52 to 2.87) urinary continence problem, and 24.4% with Asthma 1208 8.2 5717 6.6 1.25 (1.18 to 1.33) a behavioural problem recorded in the last 5 years (data not shown). COPD 160 1.1 1184 1.4 0.84 (0.71 to 0.99) Cancer 238 1.6 2090 2.4 0.70 (0.61 to 0.80) Consultations Osteoporosis 246 1.7 822 1.0 1.84 (1.60 to 2.12) Table 4 describes primary care doctor and Rheumatoid arthritis 73 0.5 550 0.6 0.82 (0.65 to 1.05) nurse consultations in 2011 for people with Dementia 160 1.1 134 0.2 7.52 (5.95 to 9.49) ID; 86.9% of people with ID consulted at Depression 2609 17.7 15 179 17.6 1.03 (0.99 to 1.06) least once in the year compared with 72.6% of matched controls. The average number Anxiety (ever) 2398 16.3 12 580 14.6 1.13 (1.09 to 1.18) of consultations in 2011 for people with ID Number of QOF conditions was 6.29 compared with 3.89 in controls 0 6320 42.8 53 856 62.5 – (RR 1.70, 95% CI = 1.66 to 1.74). These 1 5056 34.3 20 901 24.2 – differences were slightly greater for nurse 2 2138 14.5 7174 8.3 – or telephone consultations and less marked ≥3 1237 8.4 4290 5.0 – for face-to-face doctor consultations. People a b with ID in communal settings had a slightly Also require recent medication as per QOF definition. Excludes anxiety from the above list. COPD = chronic higher number of total (7.51) and face-to- obstructive pulmonary disease. IHD = ischaemic heart disease. QOF = Quality and Outcomes Framework. face doctor consultations (5.29) (data not TIA = transient ischaemic attack. shown). e266 British Journal of General Practice, April 2016 into account the number of consultations in the year, people with ID were less likely Table 3. Prevalence of disability and other problems to receive a longer consultation (OR 0.73, 95% CI = 0.69 to 0.77) (Table 5). In terms of Intellectual disability Controls continuity of care, people with ID were less ( n = 14 751) (n = 86 221) Prevalence ratio likely to see the same doctor >50% of the n % n % (95% CI) time in 2011 (43.2% versus 49.1%). This Mobility difference was consistent across different Recorded ever 6111 41.4 753 0.9 47.58 (43.63 to 51.88) numbers of total of consultations, and when Some difficulty 1677 11.4 418 0.5 24.02 (21.53 to 26.79) adjusted for the total number (OR 0.77, 95% CI = 0.73 to 0.82). Vision Bilateral visual loss or low vision 687 4.7 510 0.6 7.86 (7.01 to 8.82) DISCUSSION Continence (age ≥12 years) This cross-sectional study of over 400 Recorded ever 3017 20.5 3199 3.7 5.68 (5.41 to 5.96) English general practices showed that Bowel problem 579 3.9 240 0.3 14.43 (12.39 to 16.80) people with ID have generally higher overall Urinary problem 1755 11.9 2663 3.1 4.00 (3.77 to 4.23) levels of chronic disease with greater overall primary care use, and that this need is Hearing greatest in people living in communal Recorded ever 7361 49.9 9403 10.9 4.58 (4.47 to 4.71) settings. However, patients with ID were less Impairment 2752 18.7 7111 8.3 2.28 (2.19 to 2.37) likely to have longer doctor consultations Deaf 1220 8.3 2784 3.2 2.59 (2.42 to 2.76) and had lower continuity of care with the Behavioural problems same doctor. Last year 564 3.8 155 0.2 21.34 (17.86 to 25.50) Strengths and limitations Last 5 years 2072 14.1 742 0.9 16.28 (14.97 to 17.71) This is the first systematic description of Constipation the healthcare needs and consultation Ever 3370 22.9 7135 8.3 2.78 (2.68 to 2.88) pattern of people with ID in English primary care. The main strength of the study is the inclusion of a large unselected group of Although people with ID were more likely patients with ID identified in primary care. As learning disability has been included in the to have longer doctor consultations during QOF since 2006, most individuals known to 2011 (51.3% versus 45.1%), the proportion of services have likely been identified; however, consultations >10 minutes was lower (34.7% practices may not identify all ID individuals, versus 42.2%). This means that, after taking especially those with mild ID. Practice- matched comparisons with the general population overcome potential variation in Table 4. Consultations in 2011 practice recording of chronic conditions and consultation access. Intellectual disability Controls The main limitation of this work is the ( n = 14 751) (n = 86 221) Relative risk ratio potential for incomplete recording of some N /mean % N /mean % URR (95% CI) ARR (95% CI) characteristics in primary care. For example, Number of consultations in 2011 the majority of patients with ID are not categorised in terms of severity of their ID. 0 1936 13.1 22 489 27.4 – – Evidence from process evaluation of health 1–2 3350 22.7 22 473 26.5 – – checks suggests that identification of some 3–5 3697 25.1 20 080 22.8 – – chronic conditions and healthcare needs 6–11 3568 24.2 15 159 16.8 – – is incomplete in adults with ID; therefore, ≥12 2200 14.9 6020 7.0 – – these results should be interpreted as Mean consultations in 2011 conservative estimates of the extent of need. All 6.29 100 3.89 100 1.70 (1.66 to 1.74) 1.49 (1.47 to 1.53) The study describes continuity of care Telephone 0.95 15.1 0.44 11.3 2.26 (2.16 to 2.37) 1.87 (1.78 to 1.97) with the same clinician (relational continuity) Doctor (all) 4.45 70.8 2.88 73.9 1.63 (1.59 to 1.67) 1.45 (1.41 to 1.48) and does not address other aspects of Nurse 1.84 29.2 1.01 26.1 1.91 (1.83 to 2.00) 1.64 (1.56 to 1.71) continuity including consistency of clinical Doctor (face-to-face only) 3.65 58.0 2.52 64.7 1.53 (1.50 to 1.56) 1.37 (1.34 to 1.40) management (management continuity), a which may also be important. Adjusted for comorbidity score that used the following weights: atrial fibrillation (1), diabetes (1), stroke and transient ischaemic attack (1), epilepsy (2), heart failure (2), psychosis, schizophrenia, and bipolar affective Comparison with existing literature disorder (2), chronic obstructive pulmonary disease (2), cancer (3), dementia (3). ARR = adjusted risk ratio. A number of studies in the UK and URR = unadjusted risk ratio. internationally have described the prevalence British Journal of General Practice, April 2016 e267 Table 5. Consultation length and continuity of care for doctor (face-to-face) consultations Intellectual disability Controls ( n = 14 751) (n = 86 221) Odds ratio Group/outcome N /mean % N /mean % UOR (95% CI) AOR (95% CI) Consultation length All, N 3.65 100 2.52 100 – – Duration missing or zero, mean 0.21 5.9 0.13 5.2 – – Standard length (1–10 minutes), mean 2.17 59.5 1.32 52.6 – – Long length (>10 minutes), mean 1.27 34.7 1.06 42.2 – – Patients with >1 long consultation (>10 minutes), N 7566 51.3 38 880 45.1 1.33 (1.28 to 1.39) 0.73 (0.69 to 0.77) Continuity of care All, N 9167 100 42 135 100 – – Patients with >50% of consultations with same doctor, N 3962 43.2 20 673 49.1 0.77 (0.73 to 0.81) 0.77 (0.73 to 0.82) Continuity of care by number of consultations >50% with same doctor, 2–5 total consultations only, N 2690 45.6 14 851 49.0 – – >50% with same doctor, 6–11 total consultations only, N 975 39.4 4713 48.7 – – >50% with same doctor, ≥12 total consultations only, N 297 37.7 1109 52.1 – – a b AOR = adjusted odds ratio. UOR = unadjusted odds ratio. Adjusted for comorbidity and total number of doctor (face-to-face) consultations. Regressions restricted to 8677 match sets where case and at least one control has at least two doctor consultations. Totals for this sub-analysis: 2–5 consultations (intellectual disability = 5906, controls = 30 332), 6–11 (intellectual disability = 2473, controls = 9675), ≥12 (intellectual disability = 788, controls = 2128). of health problems in people with ID. These raise concern over inadequate identification have shown high levels of comorbidity of some conditions. Specifically, the low although comparison of estimated prevalence of ischaemic heart disease is prevalence is difficult due to population surprising given the high prevalence of 11–15 selection and disease definition. The risk factors including diabetes, obesity, overall estimate of the relative increase in hypothyroidism, chronic kidney disease, and consultations in this study is very similar to stroke. Similarly, the lower prevalence of a Dutch primary care study. cancer needs further exploration because The 18.5% prevalence of epilepsy recorded it may indicate late diagnosis or poorer in this study is lower than some estimates. survival. A potential alternative explanation This may partially reflect the application for these findings is lower rates of smoking of a fastidious definition requiring current and alcohol use among adults with ID, but treatment and use of a primary care-based caution should be used when attributing rather than register-based population. these findings to this without further There is a concern that epilepsy may evidence. be overdiagnosed in people with ID and The effect of ID on health is often these more recent findings may represent characterised as a premature ageing an improvement in diagnosis. The high phenomenon. In reality, the pattern prevalence of mental health problems is of comorbidity in people with ID is more consistent with a detailed population-based complex, with epilepsy and severe mental survey undertaken in Glasgow. illness contributing the main burden Estimates of physical and sensory of excess chronic disease. Both these disability prevalence are sparse with very conditions present challenges to primary limited information from UK studies. care and require good access to specialist Reassuringly, the estimates of severe visual services. A recent qualitative study of GPs problems in this study are close to the in Norway highlighted these challenges and prevalence of blindness reported in a well- the perceived lack of support in managing 14 21 conducted Dutch study. Similarly, recorded patients. prevalence of behavioural problems is The most novel finding of this study is the similar to earlier regional studies in England characterisation of consultation patterns in 19,20 and Norway. general practice. The higher consultation rate in primary care is contrary to existing UK Implications for research and practice data, which suggested a lower consultation The findings on prevalence of chronic disease rate among people with ID. The higher rate e268 British Journal of General Practice, April 2016 reported in this study is not explained by the given consultation is likely to be shorter on higher prevalence of conditions included average for a person with ID. in the QOF. This means that the resource For continuity of care, people with ID were implications of caring for people with ID are consistently less likely to see the same doctor. unlikely to be met through remuneration It is possible that this may partly reflect or systems developed for the QOF. In a greater propensity to consult for acute addition, the high levels of need and use problems where an urgent appointment is by patients in communal establishments more important than continuity. The results will lead to variable demands on practices of this study suggest that practices could depending on local variations in the density take steps to reach similar levels of long of communal establishments. appointments and continuity of care as for A key expectation on practices is that the general population. This may be achieved they make reasonable adjustments for by simple flags on computerised primary people with ID and two important potential care records prompting receptionists to adjustments are increased consultation offer double appointments where possible times through double appointments and 23 and bypass on-call doctor arrangements for enhanced continuity of care. The analysis Funding specific patients. of consultation length in this study provides This project was funded by the National In summary, the results of this study will a mixed picture with a slightly greater Institute for Health Research (NIHR) Health be helpful in planning and modifying general likelihood of a longer consultation during Services and Delivery Research (HS&DR) practice to meet the needs of people with ID the year, but this is reversed when the Programme (project number 12/64/154). higher overall likelihood of consultation is and address concerns over the high level of The views and opinions expressed herein are taken into account. In other words, any potentially avoidable mortality. those of the authors and do not necessarily reflect those of the HS&DR Programme, NIHR, NHS, or Department of Health. Ethical approval This study (protocol number 13_094R) was approved by the Independent Scientific Advisory Committee (ISAC) evaluation of protocols of research involving CPRD data in July 2013. St George’s Joint Research and Enterprise Office, acting on behalf of the study sponsor, confirmed no further ethical review was required. Provenance Freely submitted; externally peer reviewed. Competing interests The authors have declared no competing interests. Open access This article is Open Access: CC BY-NC 3.0 license (http://creativecommons.org/ licenses/by-nc/3.0/). Acknowledgements The authors thank the members of ResearchNet, a service user network for people with ID, and the Merton Carers Partnership Group, a group of family carers of adults with ID linked to the Merton’s Learning Disability Partnership Board, for their support and advice for this project. Prior to publication Dr Shah died, so his coauthors would like to pay tribute to him, who as the principal investigator on this study successfully led it from inception. Discuss this article Contribute and read comments about this article: bjgp.org/letters British Journal of General Practice, April 2016 e269 13. Reichard A, Stolzle H. Diabetes among adults with cognitive limitations REFERENCES compared to individuals with no cognitive disabilities. Intellect Dev Disabil 2011; 49(3): 141–154. 1. Hollins S, Attard MT, von Fraunhofer N, et al. Mortality in people with learning 14. van Splunder J, Stilma JS, Bernsen RM, Evenhuis HM. Prevalence of visual disability: risks, causes, and death certification findings in London. Dev Med impairment in adults with intellectual disabilities in the Netherlands: cross- Child Neurol 1998; 40(1): 50–56. sectional study. Eye (Lond) 2006; 20(9): 1004–1010. 2. Heslop P, Blair PS, Fleming P, et al. 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Res Dev Disabil 2013; 34(1): 521–527. bjgp14X677293. e270 British Journal of General Practice, April 2016 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png British Journal of General Practice Unpaywall

Health characteristics and consultation patterns of people with intellectual disability: a cross-sectional database study in English general practice

British Journal of General PracticeFeb 23, 2016

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Abstract

People with intellectual disability (ID) (used people with ID in the UK is limited, and the in this article in preference to the term need to improve the available data has been Background ‘learning disability’ except where reference recently reinforced. People with intellectual disability (ID) are a group with high levels of healthcare needs; In this study, the authors used the is made to specific initiatives such as the however, comprehensive information on these data from a large primary care database Quality and Outcomes Framework [QOF]) needs and service use is very limited. in England to describe chronic disease, are known to have greater healthcare needs 1,2 Aim with high levels of premature mortality. comorbidity, disability, and general practice To describe chronic disease, comorbidity, The 2013 confidential inquiry into premature use for adults with ID, and compare these disability, and general practice use among people deaths of people with ID in England reported to the general population. Specifically, with ID compared with the general population. a greater burden of potentially avoidable consultation length and continuity of care Design and setting deaths that may be prevented with good- were examined because they are potentially This study is a cross-sectional analysis of a quality health care. important adjustments for improving primary care database including 408 English Concerns over the quality of health care primary care experience for people with ID. general practices in 2012. received by people with ID have led to a Method METHOD number of initiatives in primary care in the A total of 14 751 adults with ID, aged past 10 years. These include: the adoption Data source 18–84 years, were compared with 86 221 age-, sex- and practice-matched controls. Depending of learning disability as a clinical domain The Clinical Practice Research Datalink on the outcome, prevalence (PR), risk (RR), or in the QOF in 2006; an annual Health (CPRD) is a large, validated primary odds (OR) ratios comparing patients with ID Check Scheme introduced in 2009; and care database that has been collecting with matched controls are shown. the adoption of ID as a clinical priority by anonymous patient data from participating Results 5 the Royal College of General Practitioners UK general practices since 1987. It Patients with ID had a markedly higher in 2010. In addition, all primary care is includes a longitudinal medical record for prevalence of recorded epilepsy (18.5%, PR25.33, required by statute to make reasonable all registered patients. 95% confidence interval [CI] = 23.29 to 27.57), severe mental illness (8.6%, PR 9.10, 95% adjustments to ensure that the needs of CI = 8.34 to 9.92), and dementia (1.1%, PR7.52, people with ID are met. Identification of patients with intellectual 95% CI = 5.95 to 9.49), as well as moderately Despite these initiatives, there is a disability and matched controls increased rates of hypothyroidism and heart continuing paucity of population-based To identify people with ID, the authors failure (PR>2.0). However, recorded prevalence of ischaemic heart disease and cancer was information on the health of people with searched for any code used by the QOF approximately 30% lower than the general ID because their experiences are not for learning disability and codes for population. The average annual number of routinely reported in national primary care, conditions usually associated with ID, primary care consultations was 6.29 for patients hospital, and mortality data. Specifically, such as chromosomal and metabolic with ID, compared with 3.89 for matched controls. Patients with ID were less likely to have longer comprehensive primary care information disorders. This approach identified 21 859 doctor consultations (OR 0.73, 95% CI = 0.69 to 0.77), and had lower continuity of care with the same doctor (OR 0.77, 95% CI = 0.73 to 0.82). Conclusion IM Carey, MSc, PhD, lecturer in epidemiology and Address for correspondence Compared with the general population, people medical statistics; DG Cook, MSc, PhD, professor of Iain Carey, St George’s University of London, with ID have generally higher overall levels of epidemiology; SM Shah, MSc, FFPH, senior lecturer Population Health Research Institute, Cranmer chronic disease and greater primary care use. in public health; FJ Hosking, MSc, PhD, research Terrace, Tooting, London SW17 0RE, UK. Ensuring access to high-quality chronic disease fellow; S DeWilde, MD, FRCGP, GP and senior E-mail: [email protected] management, especially for epilepsy and mental illness, will help address these greater lecturer in primary care epidemiology; T Harris, Submitted: 3 April 2015; Editor’s response: 5 June healthcare needs. Continuity of care and longer MSc, MD, MRCGP, GP and reader in primary care, 2015; final acceptance: 24 July 2015. appointment times are important potential Population Health Research Institute, St George’s, ©British Journal of General Practice improvements in primary care. University of London, London. C Beighton, MSc, This is the full-length article (published online RNLD, honorary research associate, Faculty of 24 Feb 2016) of an abridged version published in Keywords Heath Social Care and Education, Kingston and print. Cite this article as: Br J Gen Pract 2016; chronic disease; continuity of care; intellectual St George’s, University of London, London. DOI: 10.3399/bjgp16X684301 disability; learning disabilities; primary care. e264 British Journal of General Practice, April 2016 The authors searched for any evidence that people with ID were living in a communal How this fits in setting by looking for specific Read Codes or Although a number of initiatives in primary the presence of three or more people with ID care have addressed the need to improve with the same address flag, indicating that the health of people with intellectual they were living at the same address. disability (ID), there is limited information on their healthcare needs and general Definition of consultation practice use. Practices, for their part, are The aim was to identify unique events expected to make reasonable adjustments to improve access to care for people with where the patient was seen or telephoned ID. Additionally, the high prevalence of by a doctor or nurse. To achieve this in the epilepsy and severe mental health problems CPRD, the search was restricted to events in people with ID requires effective access where the consultation type (for example, to specialist advice. Improving continuity of surgery consultation) and staff member (for care and access to longer appointments are example, senior partner) met the study’s therefore important potential improvements definition, excluding administrative events in primary care. The results of this study will and repeat prescribing. For patients with ID, be helpful in planning and modifying general practice to meet the needs of people with ID consultations on days where a health check and address concerns over the high level of was recorded were excluded. potentially avoidable mortality. For face-to-face consultations with a doctor, consultation length was classified into standard (1–10 minutes) and long (>10 minutes), excluding a small number of adults (aged ≥18 years) registered in 451 zero-length consultations. As each clinician English practices for at least 1 day between has a unique identifier on the system, 1 January 2009 and 31 March 2013. These continuity of care could be estimated by individuals were matched based on age calculating the highest proportion of doctor and sex from the same practice, with up to consultations with the same doctor. A cut-off seven controls with no record of ID. of >50% was used to summarise continuity; This cross-sectional analysis reports on a if a patient had a total of five consultations, subset of 408 practices that were providing they would need at least three with the same high-quality data on 1 January 2012. A total doctor to achieve this. Although other indices of 14 751 people with ID aged 18–84 years of continuity have been proposed, this who had been registered for at least 30 days summary has the advantage of being largely on the 1 January 2012 date were included, independent of number of consultations. along with 86 221 matched controls. Table 1. Characteristics Statistical analysis of adults with intellectual Recording of chronic disease and Depending on the outcome, prevalence disability disability (PR), odds (OR), or relative risk (RR) ratios The QOF disease registers from the UK between patients with ID and their matched Characteristic n % general practice contract were used to controls were calculated using conditional All 14 751 100.0 define chronic disease. For each condition, Poisson and logistic models (Stata version Female 6216 42.1 the authors searched for the presence of 13). For PRs, Poisson models were fitted Male 8535 57.9 any Read Code in the medical record up to with robust error-variance corrections Age, years 1 January 2012 to allow the description of to provide reliable estimates. Where the prevalence or, more precisely, cumulative outcome was the number of consultations 18–34 5365 36.3 incidence. For asthma, epilepsy, and over the previous year, an offset for the 35–54 6041 41.0 hypothyroidism, in line with the QOF number of registered days was added to the 55–84 3345 22.6 definitions, a recent prescription was Poisson model, to allow for patients who had On QOF LD register 12 862 87.2 also required to give a measure of period been registered for less than a year. In the Down’s syndrome 1571 10.7 prevalence. Severe mental illness was consultation analyses, the data were further subdivided into schizophrenia and affective adjusted for comorbidity using a weighted Autism spectrum disorder 1512 10.3 disorder; anxiety was defined as an score of QOF conditions. For analyses on Communal setting 3138 21.3 additional condition. consultation length and continuity, the data Registered, years For disability, the authors identified were also adjusted for the total number of <1 1037 7.0 whether an assessment of mobility, consultations. 1–5 2945 20.0 continence (after age 12 years), and hearing >5 10 769 73.0 was ever recorded by 1 January 2012 and RESULTS whether a problem was noted. For vision, Characteristics of people with intellectual Registered on 1 January 2012 for at least 30days. behavioural problems, and constipation, the disability LD = learning disability. QOF = Quality and authors identified recording of a problem The ID group had an average age of Outcomes Framework. ever having occurred. 42.1 years (standard deviation 15.7) and British Journal of General Practice, April 2016 e265 57.9% were male (Table 1). Based on the (8.6%, PR 9.1, 95% CI = 8.34 to 9.92), and total registered population of the included dementia (1.1%, PR 7.5, 95% CI = 5.95 to practices, the estimated prevalence of 9.49). In communal settings, the prevalence identified ID was 54 per 10 000 patients; of epilepsy (27.8%) and severe mental illness 87.2% of the sample were on their practices’ (12.6%) was higher (data not shown). QOF registers for ID. People with ID experienced a moderately About 1 in 10 of the patients with ID increased risk of hypothyroidism and heart was recorded as having Down’s syndrome. failure (PR>2.0). Also significantly higher Similarly, 1 in 10 had an additional diagnosis in patients with ID (PR 1.5–2.0), were of autistic spectrum disorder. About one-fifth stroke, diabetes, chronic kidney disease, of patients with ID (21.3%) were identified as and osteoporosis. However, the recorded living within a communal setting. prevalence of ischaemic heart disease and cancer was approximately 30% lower than Chronic disease prevalence in the general population. The pattern of chronic disease is summarised A count of the number of chronic in Table 2. Compared to general population conditions per patient confirmed the controls, people with ID had a markedly greater likelihood of multiple comorbidities higher prevalence of recorded epilepsy in people with ID, with 22.9% having ≥2 (18.5%, PR 25.3, 95% confidence interval recorded conditions compared with 13.3% [CI] = 23.29 to 27.57), severe mental illness of the control group. Problems with daily living Table 3 summarises the prevalence of Table 2. Prevalence of chronic disease disability in people with ID: 41.4% of people with ID had a record of mobility status, Intellectual disability Controls with 11.4% overall reporting some form ( n = 14 751) (n = 86 221) Prevalence ratio of difficulty, compared to very little (<1%) Disease n % n % (95% CI) recording in the controls. For hearing and Epilepsy 2731 18.5 633 0.7 25.33 (23.29 to 27.57) vision, 4.7% of people with ID had a record of Severe mental illness 1266 8.6 823 1.0 9.10 (8.34 to 9.92) bilateral visual loss or low vision, and 8.3% Schizophrenia 995 6.8 591 0.7 9.94 (8.99 to 10.99) had a record of severe hearing problems; all higher than the control population. Affective disorder 371 2.5 333 0.4 6.66 (5.73 to 7.73) Bowel continence problems were recorded IHD 244 1.7 2316 2.7 0.65 (0.57 to 0.74) for 3.9%, urinary continence problems for Heart failure 121 0.8 324 0.4 2.26 (1.84 to 2.78) 11.9%, and constipation for 22.9%; 14.1% of Stroke and TIA 267 1.8 944 1.1 1.74 (1.52 to 1.98) people with ID had a recorded behavioural Atrial fibrillation 122 0.8 821 1.0 0.91 (0.75 to 1.09) problem in the last 5 years. The recording of Hypertension 1583 10.7 10 416 12.1 0.93 (0.89 to 0.98) all these conditions was considerably lower in the control population. Levels of disability Peripheral vascular disease 61 0.4 423 0.5 0.90 (0.69 to 1.17) were higher among those identified living Chronic kidney disease 468 3.2 1746 2.1 1.64 (1.49 to 1.82) in communal settings with 21.4% with a Diabetes 1017 6.9 3786 4.4 1.64 (1.53 to 1.75) recorded mobility problem, 19.9% with a Hypothyroidism 1169 7.9 2649 3.1 2.69 (2.52 to 2.87) urinary continence problem, and 24.4% with Asthma 1208 8.2 5717 6.6 1.25 (1.18 to 1.33) a behavioural problem recorded in the last 5 years (data not shown). COPD 160 1.1 1184 1.4 0.84 (0.71 to 0.99) Cancer 238 1.6 2090 2.4 0.70 (0.61 to 0.80) Consultations Osteoporosis 246 1.7 822 1.0 1.84 (1.60 to 2.12) Table 4 describes primary care doctor and Rheumatoid arthritis 73 0.5 550 0.6 0.82 (0.65 to 1.05) nurse consultations in 2011 for people with Dementia 160 1.1 134 0.2 7.52 (5.95 to 9.49) ID; 86.9% of people with ID consulted at Depression 2609 17.7 15 179 17.6 1.03 (0.99 to 1.06) least once in the year compared with 72.6% of matched controls. The average number Anxiety (ever) 2398 16.3 12 580 14.6 1.13 (1.09 to 1.18) of consultations in 2011 for people with ID Number of QOF conditions was 6.29 compared with 3.89 in controls 0 6320 42.8 53 856 62.5 – (RR 1.70, 95% CI = 1.66 to 1.74). These 1 5056 34.3 20 901 24.2 – differences were slightly greater for nurse 2 2138 14.5 7174 8.3 – or telephone consultations and less marked ≥3 1237 8.4 4290 5.0 – for face-to-face doctor consultations. People a b with ID in communal settings had a slightly Also require recent medication as per QOF definition. Excludes anxiety from the above list. COPD = chronic higher number of total (7.51) and face-to- obstructive pulmonary disease. IHD = ischaemic heart disease. QOF = Quality and Outcomes Framework. face doctor consultations (5.29) (data not TIA = transient ischaemic attack. shown). e266 British Journal of General Practice, April 2016 into account the number of consultations in the year, people with ID were less likely Table 3. Prevalence of disability and other problems to receive a longer consultation (OR 0.73, 95% CI = 0.69 to 0.77) (Table 5). In terms of Intellectual disability Controls continuity of care, people with ID were less ( n = 14 751) (n = 86 221) Prevalence ratio likely to see the same doctor >50% of the n % n % (95% CI) time in 2011 (43.2% versus 49.1%). This Mobility difference was consistent across different Recorded ever 6111 41.4 753 0.9 47.58 (43.63 to 51.88) numbers of total of consultations, and when Some difficulty 1677 11.4 418 0.5 24.02 (21.53 to 26.79) adjusted for the total number (OR 0.77, 95% CI = 0.73 to 0.82). Vision Bilateral visual loss or low vision 687 4.7 510 0.6 7.86 (7.01 to 8.82) DISCUSSION Continence (age ≥12 years) This cross-sectional study of over 400 Recorded ever 3017 20.5 3199 3.7 5.68 (5.41 to 5.96) English general practices showed that Bowel problem 579 3.9 240 0.3 14.43 (12.39 to 16.80) people with ID have generally higher overall Urinary problem 1755 11.9 2663 3.1 4.00 (3.77 to 4.23) levels of chronic disease with greater overall primary care use, and that this need is Hearing greatest in people living in communal Recorded ever 7361 49.9 9403 10.9 4.58 (4.47 to 4.71) settings. However, patients with ID were less Impairment 2752 18.7 7111 8.3 2.28 (2.19 to 2.37) likely to have longer doctor consultations Deaf 1220 8.3 2784 3.2 2.59 (2.42 to 2.76) and had lower continuity of care with the Behavioural problems same doctor. Last year 564 3.8 155 0.2 21.34 (17.86 to 25.50) Strengths and limitations Last 5 years 2072 14.1 742 0.9 16.28 (14.97 to 17.71) This is the first systematic description of Constipation the healthcare needs and consultation Ever 3370 22.9 7135 8.3 2.78 (2.68 to 2.88) pattern of people with ID in English primary care. The main strength of the study is the inclusion of a large unselected group of Although people with ID were more likely patients with ID identified in primary care. As learning disability has been included in the to have longer doctor consultations during QOF since 2006, most individuals known to 2011 (51.3% versus 45.1%), the proportion of services have likely been identified; however, consultations >10 minutes was lower (34.7% practices may not identify all ID individuals, versus 42.2%). This means that, after taking especially those with mild ID. Practice- matched comparisons with the general population overcome potential variation in Table 4. Consultations in 2011 practice recording of chronic conditions and consultation access. Intellectual disability Controls The main limitation of this work is the ( n = 14 751) (n = 86 221) Relative risk ratio potential for incomplete recording of some N /mean % N /mean % URR (95% CI) ARR (95% CI) characteristics in primary care. For example, Number of consultations in 2011 the majority of patients with ID are not categorised in terms of severity of their ID. 0 1936 13.1 22 489 27.4 – – Evidence from process evaluation of health 1–2 3350 22.7 22 473 26.5 – – checks suggests that identification of some 3–5 3697 25.1 20 080 22.8 – – chronic conditions and healthcare needs 6–11 3568 24.2 15 159 16.8 – – is incomplete in adults with ID; therefore, ≥12 2200 14.9 6020 7.0 – – these results should be interpreted as Mean consultations in 2011 conservative estimates of the extent of need. All 6.29 100 3.89 100 1.70 (1.66 to 1.74) 1.49 (1.47 to 1.53) The study describes continuity of care Telephone 0.95 15.1 0.44 11.3 2.26 (2.16 to 2.37) 1.87 (1.78 to 1.97) with the same clinician (relational continuity) Doctor (all) 4.45 70.8 2.88 73.9 1.63 (1.59 to 1.67) 1.45 (1.41 to 1.48) and does not address other aspects of Nurse 1.84 29.2 1.01 26.1 1.91 (1.83 to 2.00) 1.64 (1.56 to 1.71) continuity including consistency of clinical Doctor (face-to-face only) 3.65 58.0 2.52 64.7 1.53 (1.50 to 1.56) 1.37 (1.34 to 1.40) management (management continuity), a which may also be important. Adjusted for comorbidity score that used the following weights: atrial fibrillation (1), diabetes (1), stroke and transient ischaemic attack (1), epilepsy (2), heart failure (2), psychosis, schizophrenia, and bipolar affective Comparison with existing literature disorder (2), chronic obstructive pulmonary disease (2), cancer (3), dementia (3). ARR = adjusted risk ratio. A number of studies in the UK and URR = unadjusted risk ratio. internationally have described the prevalence British Journal of General Practice, April 2016 e267 Table 5. Consultation length and continuity of care for doctor (face-to-face) consultations Intellectual disability Controls ( n = 14 751) (n = 86 221) Odds ratio Group/outcome N /mean % N /mean % UOR (95% CI) AOR (95% CI) Consultation length All, N 3.65 100 2.52 100 – – Duration missing or zero, mean 0.21 5.9 0.13 5.2 – – Standard length (1–10 minutes), mean 2.17 59.5 1.32 52.6 – – Long length (>10 minutes), mean 1.27 34.7 1.06 42.2 – – Patients with >1 long consultation (>10 minutes), N 7566 51.3 38 880 45.1 1.33 (1.28 to 1.39) 0.73 (0.69 to 0.77) Continuity of care All, N 9167 100 42 135 100 – – Patients with >50% of consultations with same doctor, N 3962 43.2 20 673 49.1 0.77 (0.73 to 0.81) 0.77 (0.73 to 0.82) Continuity of care by number of consultations >50% with same doctor, 2–5 total consultations only, N 2690 45.6 14 851 49.0 – – >50% with same doctor, 6–11 total consultations only, N 975 39.4 4713 48.7 – – >50% with same doctor, ≥12 total consultations only, N 297 37.7 1109 52.1 – – a b AOR = adjusted odds ratio. UOR = unadjusted odds ratio. Adjusted for comorbidity and total number of doctor (face-to-face) consultations. Regressions restricted to 8677 match sets where case and at least one control has at least two doctor consultations. Totals for this sub-analysis: 2–5 consultations (intellectual disability = 5906, controls = 30 332), 6–11 (intellectual disability = 2473, controls = 9675), ≥12 (intellectual disability = 788, controls = 2128). of health problems in people with ID. These raise concern over inadequate identification have shown high levels of comorbidity of some conditions. Specifically, the low although comparison of estimated prevalence of ischaemic heart disease is prevalence is difficult due to population surprising given the high prevalence of 11–15 selection and disease definition. The risk factors including diabetes, obesity, overall estimate of the relative increase in hypothyroidism, chronic kidney disease, and consultations in this study is very similar to stroke. Similarly, the lower prevalence of a Dutch primary care study. cancer needs further exploration because The 18.5% prevalence of epilepsy recorded it may indicate late diagnosis or poorer in this study is lower than some estimates. survival. A potential alternative explanation This may partially reflect the application for these findings is lower rates of smoking of a fastidious definition requiring current and alcohol use among adults with ID, but treatment and use of a primary care-based caution should be used when attributing rather than register-based population. these findings to this without further There is a concern that epilepsy may evidence. be overdiagnosed in people with ID and The effect of ID on health is often these more recent findings may represent characterised as a premature ageing an improvement in diagnosis. The high phenomenon. In reality, the pattern prevalence of mental health problems is of comorbidity in people with ID is more consistent with a detailed population-based complex, with epilepsy and severe mental survey undertaken in Glasgow. illness contributing the main burden Estimates of physical and sensory of excess chronic disease. Both these disability prevalence are sparse with very conditions present challenges to primary limited information from UK studies. care and require good access to specialist Reassuringly, the estimates of severe visual services. A recent qualitative study of GPs problems in this study are close to the in Norway highlighted these challenges and prevalence of blindness reported in a well- the perceived lack of support in managing 14 21 conducted Dutch study. Similarly, recorded patients. prevalence of behavioural problems is The most novel finding of this study is the similar to earlier regional studies in England characterisation of consultation patterns in 19,20 and Norway. general practice. The higher consultation rate in primary care is contrary to existing UK Implications for research and practice data, which suggested a lower consultation The findings on prevalence of chronic disease rate among people with ID. The higher rate e268 British Journal of General Practice, April 2016 reported in this study is not explained by the given consultation is likely to be shorter on higher prevalence of conditions included average for a person with ID. in the QOF. This means that the resource For continuity of care, people with ID were implications of caring for people with ID are consistently less likely to see the same doctor. unlikely to be met through remuneration It is possible that this may partly reflect or systems developed for the QOF. In a greater propensity to consult for acute addition, the high levels of need and use problems where an urgent appointment is by patients in communal establishments more important than continuity. The results will lead to variable demands on practices of this study suggest that practices could depending on local variations in the density take steps to reach similar levels of long of communal establishments. appointments and continuity of care as for A key expectation on practices is that the general population. This may be achieved they make reasonable adjustments for by simple flags on computerised primary people with ID and two important potential care records prompting receptionists to adjustments are increased consultation offer double appointments where possible times through double appointments and 23 and bypass on-call doctor arrangements for enhanced continuity of care. The analysis Funding specific patients. of consultation length in this study provides This project was funded by the National In summary, the results of this study will a mixed picture with a slightly greater Institute for Health Research (NIHR) Health be helpful in planning and modifying general likelihood of a longer consultation during Services and Delivery Research (HS&DR) practice to meet the needs of people with ID the year, but this is reversed when the Programme (project number 12/64/154). higher overall likelihood of consultation is and address concerns over the high level of The views and opinions expressed herein are taken into account. In other words, any potentially avoidable mortality. those of the authors and do not necessarily reflect those of the HS&DR Programme, NIHR, NHS, or Department of Health. Ethical approval This study (protocol number 13_094R) was approved by the Independent Scientific Advisory Committee (ISAC) evaluation of protocols of research involving CPRD data in July 2013. St George’s Joint Research and Enterprise Office, acting on behalf of the study sponsor, confirmed no further ethical review was required. Provenance Freely submitted; externally peer reviewed. Competing interests The authors have declared no competing interests. Open access This article is Open Access: CC BY-NC 3.0 license (http://creativecommons.org/ licenses/by-nc/3.0/). Acknowledgements The authors thank the members of ResearchNet, a service user network for people with ID, and the Merton Carers Partnership Group, a group of family carers of adults with ID linked to the Merton’s Learning Disability Partnership Board, for their support and advice for this project. 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