Abstract
Background
The population of unpaid carers in Wales increased to record. There is no systematic approach to record unpaid caring status, resulting in limited quantitative evidence on unpaid carers’ health. The aim of this study is to: (i) create an e-cohort of unpaid carers by linking routinely collected health and administrative datasets in Wales, UK. (ii) investigate whether long-term health conditions and multimorbidity are more prevalent amongst unpaid carers than non-carers.
Methods
Unpaid carers were identified by linking primary care dataset, National Survey for Wales data with demographic characteristics in the Secure Anonymise Information Linkage Databank. The clinical codes identified in Cambridge Multimorbidity Score were used to explore the prevalence of long-term health conditions.
Results
A total of 91 220 unpaid carers in Wales were identified between 1 January 2010 and 1 March 2022. Unpaid carers were found at higher risk of managing 35 of 37 long-term health conditions and multimorbidity than non-carers, exacerbated amongst younger age groups and deprived communities.
Conclusions
The creation of the first e-cohort of unpaid carers in Wales provides opportunities to perform rapid analysis to systematically understand health needs and evaluate initiatives in future. To better support unpaid carers, flexible approaches focusing on early identification and prevention is crucial.
Keywords: carers, morbidity and mortality, public health
Introduction
With an ageing population and increasing proportion managing complex health needs, unpaid carers play a significant role in providing care. Unpaid carer is ‘a person looks after, or give any help or support to family members, friends, neighbours or others’.1 It was estimated that there were over 400 000 unpaid carers in 2019 in Wales, UK and approximately 700 000 during the COVID-19 pandemic with the number expected to keep increasing in a foreseeable future.2,3
Providing care can be rewarding whilst having negative impact on unpaid carers’ own health but often overlooked.4,5 Studies found that high caring intensity had negative impact on unpaid carers mental wellbeing, and unpaid carers were more likely to suffer from anxiety, depression and other physical health conditions than non-carers.4,6–10 However, there is limited quantitative studies investigating the health needs of unpaid carers. Particularly, there is a lack of systematic data collection on unpaid carers in Wales, therefore conducting large scale data analysis to understand the inequalities and unpaid carers’ health condition becomes extremely difficult.11
This study aims to generate a reproducible e-cohort of unpaid carers in Wales utilizing routinely collected health and administrative data, and understand the health needs of this population group.
Methods
E-cohort of unpaid carers
Working with general practitioners, a list of Read codes was validated to identify unpaid carers.12 National Survey for Wales (NSW) 2016/17, 2017/18, 2018/19 and 2019/20 data and primary care dataset (from 1 January 2010 to 1 March 2022) were used to identify unpaid carers (Fig. 1). Anonymous Linking Field code was utilized to eliminate duplication. Demographic Service Database and Census 2011 were linked to obtain socio-demographic information.
Fig. 1.
Flow diagram of the creation of the e-cohort of unpaid carers in Wales.
A matched comparison group
Welsh residents who had not been identified as unpaid carers were randomly selected to form a comparison group matched with unpaid carers on sex, age and deprivation.13
Long-term health conditions and multimorbidity
Clinical codes used to identify 37 long-term health conditions in Cambridge Multimorbidity Score were used to scan primary care records14–16 (full list of 37 long-term health conditions can be accessed from CPRD@Cambardge—Codes List16). Presenting with two or more conditions was defined as multimorbidity. We retrospectively tracked the primary care records of unpaid carers and flagged up cases with long-term health conditions and multimorbidity.
Statistical analysis
In this study, all data were stored in the Secure Anonymised Information Linkage (SAIL) Databank where data linkage and analysis were conducted.17 Crude prevalence rate, adjusted prevalence rate, rate ratio of long-term health conditions and multimorbidity were produced. P < 0.05 was considered as statistically significant.
Results
E-cohort characteristics
Amongst 91 220 unpaid carers, approximately two-thirds were female (65.0% versus 50.7% in the general population) and a quarter were between 55 and 64 years old (24.7% versus 12.8%). In total, 5.5% of them were under the age of 25 and 16.5% were over 75. Distribution across deprivation quintiles was similar with mid-2018 Welsh population estimate.18
Prevalence of long-term health conditions and multimorbidity
Overall prevalence of long-term health conditions
Overall, the prevalence of all 37 long-term health conditions was significantly higher amongst unpaid carers than non-carers, except for peripheral vascular disease (P = 0.14) and multiple sclerosis (P = 0.64). The five most common conditions amongst unpaid carers were anxiety and/or depression (age-sex standardized rate18: 243.9 per 1000 population), hypertension (89.2), hearing loss (79.4), chronic kidney disease (72.6) and asthma (60.2) (Table 1). The conditions amongst non-carers were consistent with unpaid carers but at a lower prevalence. Amongst the 10 most prevalent conditions, the greatest difference between unpaid carers and non-carers were cancer (rate ratio 2.5, 95% CI 2.4–2.7), anxiety and/or depression (1.7, 1.7–1.8), constipation (1.7, 1.6–1.8) and musculoskeletal disorders (1.5, 1.4–1.6), see Table 1.
Table 1.
Top 10 prevalent (crude rate and adjusted rate of per 1000 population) of long-term health condition amongst unpaid carers (whole sample and by age groups) and rate ratio against non-carers
| Carer | Non-carer | Carer versus Non-carer | ||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Whole sample | Crude rate | Adjusted rate | CI low | CI high | Crude rate | Adjusted rate | CI low | CI high | Rate ratio | CI low | CI high | P-value (difference in crude rate) |
| Anxiety and/or depression | 276.1 | 243.9 | 240.0 | 247.7 | 180.6 | 142.7 | 139.9 | 145.6 | 1.7 | 1.7 | 1.8 | <0.001 |
| Hypertension | 129.7 | 89.2 | 87.5 | 90.8 | 108.4 | 72.1 | 70.7 | 73.5 | 1.2 | 1.2 | 1.3 | <0.001 |
| Hearing loss | 91.4 | 79.4 | 77.0 | 81.9 | 67.1 | 52.7 | 50.9 | 54.5 | 1.5 | 1.4 | 1.6 | <0.001 |
| Chronic kidney disease | 111.0 | 72.6 | 71.1 | 74.0 | 99.3 | 64.2 | 62.8 | 65.5 | 1.1 | 1.1 | 1.2 | <0.001 |
| Asthma | 58.5 | 60.2 | 57.8 | 62.7 | 50.4 | 46.1 | 44.1 | 48.1 | 1.3 | 1.2 | 1.4 | <0.001 |
| Diabetes | 74.9 | 55.4 | 53.9 | 56.8 | 67.5 | 47.2 | 45.9 | 48.4 | 1.2 | 1.1 | 1.2 | <0.001 |
| Musculoskeletal disorders | 67.5 | 54.1 | 52.2 | 56.0 | 48.2 | 35.8 | 34.3 | 37.2 | 1.5 | 1.4 | 1.6 | <0.001 |
| Irritable bowel syndrome | 60.5 | 49.5 | 47.8 | 51.3 | 41.2 | 32.7 | 31.2 | 34.1 | 1.5 | 1.4 | 1.6 | <0.001 |
| Constipation | 57.0 | 41.1 | 39.6 | 42.6 | 36.8 | 23.8 | 22.9 | 24.7 | 1.7 | 1.6 | 1.8 | <0.001 |
| Cancer (diagnosis in last 5 years) | 50.8 | 36.2 | 35.0 | 37.4 | 22.2 | 14.3 | 13.6 | 15.0 | 2.5 | 2.4 | 2.7 | <0.001 |
| <25 years | ||||||||||||
| Anxiety and/or depression | 189.9 | 177.6 | 167.0 | 188.2 | 87.1 | 78.1 | 70.9 | 85.4 | 2.3 | 2.0 | 2.6 | <0.001 |
| Asthma | 67.7 | 68.2 | 60.9 | 75.4 | 41.8 | 41.2 | 35.5 | 46.9 | 1.7 | 1.4 | 2.0 | <0.001 |
| Hearing loss | 58.0 | 58.6 | 51.8 | 65.4 | 27.7 | 28.3 | 23.5 | 33.1 | 2.1 | 1.7 | 2.6 | <0.001 |
| Learning disability | 46.3 | 53.5 | 46.7 | 60.3 | 5.3 | 5.8 | 3.6 | 8.1 | 9.2 | 6.1 | 14.5 | <0.001 |
| Musculoskeletal disorders | 32.5 | 32.0 | 27.0 | 37.0 | 13.5 | 14.4 | 10.9 | 17.9 | 2.2 | 1.6 | 3.0 | <0.001 |
| Irritable bowel syndrome | 33.5 | 28.6 | 24.2 | 33.0 | 21.4 | 19.2 | 15.5 | 22.9 | 1.5 | 1.2 | 1.9 | <0.001 |
| Epilepsy | 23.4 | 25.7 | 20.9 | 30.4 | 5.7 | 5.5 | 3.4 | 7.6 | 4.6 | 3.0 | 7.4 | <0.001 |
| Schizophrenia or bipolar disorder | 15.8 | 18.2 | 14.1 | 22.2 | 3.0 | 3.0 | 1.4 | 4.6 | 6.0 | 3.4 | 11.6 | <0.001 |
| Psychoactive substance misuse (not alcohol) | 16.4 | 16.7 | 13.0 | 20.4 | 6.9 | 7.4 | 4.9 | 10.0 | 2.3 | 1.5 | 3.5 | <0.001 |
| Constipation | 14.3 | 15.5 | 11.8 | 19.2 | 4.0 | 3.7 | 2.0 | 5.3 | 4.2 | 2.5 | 7.5 | <0.001 |
| 25–34 years | ||||||||||||
| Anxiety and/or depression | 286.4 | 271.1 | 260.5 | 281.7 | 155.5 | 138.9 | 130.9 | 146.8 | 2.0 | 1.8 | 2.1 | <0.001 |
| Irritable bowel syndrome | 77.5 | 66.1 | 60.6 | 71.6 | 51.3 | 40.4 | 36.3 | 44.5 | 1.6 | 1.4 | 1.9 | <0.001 |
| Asthma | 59.6 | 55.7 | 50.3 | 61.1 | 45.1 | 40.3 | 35.8 | 44.8 | 1.4 | 1.2 | 1.6 | <0.001 |
| Hearing loss | 46.8 | 46.5 | 41.4 | 51.6 | 25.7 | 25.0 | 21.2 | 28.7 | 1.9 | 1.5 | 2.3 | <0.001 |
| Learning disability | 31.0 | 40.8 | 35.5 | 46.1 | 3.8 | 3.8 | 2.3 | 5.3 | 10.8 | 7.0 | 17.1 | <0.001 |
| Musculoskeletal disorders | 36.4 | 36.4 | 31.8 | 40.9 | 20.9 | 20.7 | 17.2 | 24.2 | 1.8 | 1.4 | 2.2 | <0.001 |
| Psychoactive substance misuse (not alcohol) | 27.1 | 33.1 | 28.4 | 37.9 | 19.0 | 22.8 | 18.9 | 26.7 | 1.5 | 1.2 | 1.8 | <0.001 |
| Schizophrenia or bipolar disorder | 24.1 | 27.9 | 23.6 | 32.2 | 8.6 | 8.2 | 6.0 | 10.4 | 3.4 | 2.5 | 4.7 | <0.001 |
| Epilepsy | 20.1 | 23.2 | 19.3 | 27.1 | 7.8 | 7.5 | 5.4 | 9.6 | 3.1 | 2.2 | 4.3 | <0.001 |
| Alcohol problems | 20.1 | 23.2 | 19.3 | 27.1 | 16.2 | 17.3 | 14.0 | 20.5 | 1.3 | 1.0 | 1.7 | 0.070 |
| 35–44 years | ||||||||||||
| Anxiety and/or depression | 306.6 | 289.4 | 280.5 | 298.3 | 182.7 | 168.3 | 161.1 | 175.5 | 1.7 | 1.6 | 1.8 | <0.001 |
| Irritable bowel syndrome | 82.8 | 73.0 | 68.1 | 77.8 | 46.7 | 40.3 | 36.7 | 43.9 | 1.8 | 1.6 | 2.0 | <0.001 |
| Asthma | 65.0 | 61.8 | 57.1 | 66.5 | 50.7 | 48.7 | 44.4 | 52.9 | 1.3 | 1.1 | 1.4 | <0.001 |
| Hearing loss | 50.1 | 51.5 | 47.0 | 56.0 | 29.7 | 29.4 | 26.0 | 32.8 | 1.8 | 1.5 | 2.0 | <0.001 |
| Hypertension | 46.0 | 50.3 | 45.7 | 54.8 | 28.0 | 28.0 | 24.7 | 31.3 | 1.8 | 1.5 | 2.1 | <0.001 |
| Musculoskeletal disorders | 49.8 | 48.2 | 44.0 | 52.4 | 28.3 | 26.4 | 23.3 | 29.5 | 1.8 | 1.6 | 2.1 | <0.001 |
| Diabetes | 30.3 | 31.7 | 28.1 | 35.3 | 19.6 | 19.7 | 16.9 | 22.5 | 1.6 | 1.3 | 1.9 | <0.001 |
| Thyroid disorders | 38.8 | 31.4 | 28.4 | 34.5 | 29.0 | 23.2 | 20.6 | 25.8 | 1.4 | 1.2 | 1.6 | <0.001 |
| Schizophrenia or bipolar disorder | 25.8 | 29.8 | 26.2 | 33.4 | 10.5 | 11.0 | 8.8 | 13.1 | 2.7 | 2.1 | 3.5 | <0.001 |
| Alcohol problems | 22.9 | 27.0 | 23.5 | 30.4 | 18.5 | 21.6 | 18.5 | 24.7 | 1.2 | 1.0 | 1.5 | 0.022 |
| 45–54 years | ||||||||||||
| Anxiety and/or depression | 306.6 | 289.5 | 282.6 | 296.3 | 207.6 | 188.1 | 182.4 | 193.9 | 1.5 | 1.5 | 1.6 | <0.001 |
| Hypertension | 114.1 | 120.0 | 114.8 | 125.1 | 86.6 | 88.9 | 84.5 | 93.4 | 1.3 | 1.3 | 1.4 | <0.001 |
| Irritable bowel syndrome | 71.8 | 63.8 | 60.2 | 67.3 | 47.2 | 41.6 | 38.7 | 44.4 | 1.5 | 1.4 | 1.7 | <0.001 |
| Musculoskeletal disorders | 65.2 | 61.4 | 57.8 | 65.0 | 43.0 | 40.9 | 37.9 | 43.8 | 1.5 | 1.4 | 1.7 | <0.001 |
| Hearing loss | 58.4 | 59.7 | 56.0 | 63.4 | 38.5 | 37.8 | 34.9 | 40.7 | 1.6 | 1.4 | 1.8 | <0.001 |
| Asthma | 60.8 | 58.1 | 54.6 | 61.7 | 53.2 | 50.8 | 47.4 | 54.1 | 1.1 | 1.0 | 1.3 | 0.002 |
| Diabetes | 48.9 | 53.5 | 49.8 | 57.1 | 46.7 | 49.6 | 46.1 | 53.0 | 1.1 | 1.0 | 1.2 | 0.335 |
| Thyroid disorders | 50.8 | 43.5 | 40.6 | 46.4 | 36.0 | 29.9 | 27.5 | 32.2 | 1.5 | 1.3 | 1.6 | <0.001 |
| Chronic kidney disease | 36.4 | 34.3 | 31.6 | 37.1 | 35.3 | 33.5 | 30.8 | 36.2 | 1.0 | 0.9 | 1.2 | 0.609 |
| Constipation | 36.4 | 33.9 | 31.2 | 36.7 | 20.6 | 18.4 | 16.4 | 20.3 | 1.8 | 1.6 | 2.1 | <0.001 |
| 55–64 years | ||||||||||||
| Anxiety and/or depression | 264.5 | 251.4 | 245.5 | 257.3 | 195.1 | 179.9 | 174.8 | 185.0 | 1.4 | 1.3 | 1.5 | <0.001 |
| Hypertension | 163.0 | 170.7 | 165.4 | 176.0 | 138.7 | 144.6 | 139.7 | 149.5 | 1.2 | 1.1 | 1.2 | <0.001 |
| Hearing loss | 77.6 | 82.6 | 78.7 | 86.5 | 56.1 | 56.6 | 53.4 | 59.8 | 1.5 | 1.4 | 1.6 | <0.001 |
| Musculoskeletal disorders | 76.1 | 72.7 | 69.2 | 76.2 | 56.5 | 53.7 | 50.7 | 56.7 | 1.4 | 1.3 | 1.5 | <0.001 |
| Diabetes | 65.0 | 72.5 | 68.8 | 76.3 | 75.0 | 81.8 | 77.9 | 85.7 | 0.9 | 0.8 | 1.0 | <0.001 |
| Chronic kidney disease | 66.1 | 63.5 | 60.2 | 66.8 | 64.9 | 61.5 | 58.3 | 64.8 | 1.0 | 1.0 | 1.1 | 0.594 |
| Irritable bowel syndrome | 59.3 | 53.1 | 50.1 | 56.0 | 42.1 | 37.0 | 34.6 | 39.5 | 1.4 | 1.3 | 1.6 | <0.001 |
| Asthma | 49.5 | 47.5 | 44.6 | 50.4 | 52.5 | 49.0 | 46.2 | 51.9 | 1.0 | 0.9 | 1.1 | 0.151 |
| Thyroid disorders | 54.6 | 46.8 | 44.2 | 49.5 | 44.5 | 37.2 | 34.9 | 39.6 | 1.3 | 1.2 | 1.4 | <0.001 |
| Cancer (diagnosis in last 5 years) | 41.4 | 44.3 | 41.4 | 47.3 | 24.1 | 22.9 | 20.9 | 24.9 | 1.9 | 1.7 | 2.2 | <0.001 |
| 65–74 years | ||||||||||||
| Anxiety and/or depression | 259.2 | 251.5 | 243.8 | 259.2 | 169.8 | 161.1 | 154.7 | 167.6 | 1.6 | 1.5 | 1.7 | <0.001 |
| Hypertension | 206.6 | 210.0 | 202.5 | 217.4 | 178.1 | 179.5 | 172.5 | 186.5 | 1.2 | 1.1 | 1.2 | <0.001 |
| Chronic kidney disease | 161.3 | 159.9 | 153.3 | 166.5 | 142.9 | 141.5 | 135.2 | 147.7 | 1.1 | 1.1 | 1.2 | <0.001 |
| Diabetes | 141.9 | 149.6 | 143.1 | 156.2 | 116.2 | 119.9 | 113.9 | 125.8 | 1.2 | 1.2 | 1.3 | <0.001 |
| Hearing loss | 118.0 | 122.4 | 116.3 | 128.4 | 93.4 | 95.1 | 89.8 | 100.5 | 1.3 | 1.2 | 1.4 | <0.001 |
| Cancer (diagnosis in last 5 years) | 102.7 | 108.1 | 102.4 | 113.8 | 38.7 | 39.6 | 36.0 | 43.1 | 2.7 | 2.4 | 3.0 | <0.001 |
| COPD | 81.0 | 83.9 | 78.8 | 89.0 | 61.9 | 62.5 | 58.1 | 66.9 | 1.3 | 1.2 | 1.5 | <0.001 |
| Musculoskeletal disorders | 85.4 | 81.8 | 76.9 | 86.6 | 65.4 | 62.9 | 58.6 | 67.2 | 1.3 | 1.2 | 1.4 | <0.001 |
| Coronary heart disease | 68.6 | 74.2 | 69.3 | 79.1 | 53.8 | 57.8 | 53.5 | 62.2 | 1.3 | 1.2 | 1.4 | <0.001 |
| Diverticular disease of intestine | 73.4 | 71.7 | 67.1 | 76.3 | 61.4 | 60.2 | 55.9 | 64.5 | 1.2 | 1.1 | 1.3 | <0.001 |
| 75+ years | ||||||||||||
| Chronic kidney disease | 377.3 | 377.3 | 369.5 | 385.0 | 328.1 | 328.0 | 320.5 | 335.5 | 1.2 | 1.1 | 1.2 | <0.001 |
| Anxiety and/or depression | 272.1 | 272.0 | 264.9 | 279.0 | 177.9 | 177.8 | 171.7 | 183.9 | 1.5 | 1.5 | 1.6 | <0.001 |
| Hypertension | 199.5 | 199.5 | 193.1 | 205.9 | 179.2 | 179.2 | 173.1 | 185.3 | 1.1 | 1.1 | 1.2 | <0.001 |
| Hearing loss | 194.3 | 194.3 | 188.0 | 200.6 | 158.4 | 158.5 | 152.6 | 164.3 | 1.2 | 1.2 | 1.3 | <0.001 |
| Dementia | 185.0 | 184.9 | 178.7 | 191.1 | 54.7 | 54.7 | 51.0 | 58.3 | 3.4 | 3.1 | 3.7 | <0.001 |
| Constipation | 155.6 | 155.6 | 149.8 | 161.3 | 106.5 | 106.5 | 101.5 | 111.4 | 1.5 | 1.4 | 1.6 | <0.001 |
| Diabetes | 153.6 | 153.6 | 147.9 | 159.4 | 126.9 | 127.0 | 121.6 | 132.3 | 1.2 | 1.1 | 1.3 | <0.001 |
| Cancer (diagnosis in last 5 years) | 122.5 | 122.5 | 117.3 | 127.8 | 49.0 | 49.1 | 45.6 | 52.5 | 2.5 | 2.3 | 2.7 | <0.001 |
| Atrial fibrillation | 119.2 | 119.2 | 114.1 | 124.4 | 102.5 | 102.6 | 97.7 | 107.4 | 1.2 | 1.1 | 1.2 | <0.001 |
| Coronary heart disease | 116.7 | 116.7 | 111.6 | 121.8 | 86.9 | 87.0 | 82.5 | 91.5 | 1.3 | 1.2 | 1.4 | <0.001 |
| Most deprived quintile | ||||||||||||
| Anxiety and/or depression | 338.0 | 287.6 | 279.1 | 296.0 | 237.6 | 184.2 | 177.7 | 190.8 | 1.6 | 1.5 | 1.6 | <0.001 |
| Hypertension | 131.7 | 88.1 | 84.5 | 91.6 | 107.4 | 70.9 | 67.8 | 74.0 | 1.2 | 1.2 | 1.3 | <0.001 |
| Hearing loss | 85.4 | 74.1 | 69.2 | 79.1 | 63.2 | 48.7 | 45.0 | 52.4 | 1.5 | 1.4 | 1.7 | <0.001 |
| Asthma | 70.6 | 71.0 | 65.5 | 76.4 | 63.8 | 55.0 | 50.6 | 59.5 | 1.3 | 1.1 | 1.4 | 0.010 |
| Chronic kidney disease | 96.5 | 62.1 | 59.1 | 65.1 | 88.1 | 56.2 | 53.4 | 58.9 | 1.1 | 1.0 | 1.2 | 0.007 |
| Diabetes | 87.1 | 60.3 | 57.2 | 63.4 | 80.3 | 53.9 | 51.1 | 56.7 | 1.1 | 1.0 | 1.2 | 0.020 |
| Irritable bowel syndrome | 68.2 | 54.7 | 50.8 | 58.5 | 44.3 | 33.2 | 30.4 | 36.1 | 1.6 | 1.5 | 1.8 | <0.001 |
| Musculoskeletal disorders | 66.9 | 53.5 | 49.5 | 57.5 | 49.5 | 35.6 | 32.6 | 38.6 | 1.5 | 1.3 | 1.7 | <0.001 |
| Constipation | 63.3 | 42.7 | 39.8 | 45.6 | 40.6 | 26.2 | 24.0 | 28.3 | 1.6 | 1.5 | 1.8 | <0.001 |
| Cancer (diagnosis in last 5 years) | 50.5 | 34.1 | 31.7 | 36.5 | 20.9 | 13.3 | 11.8 | 14.8 | 2.6 | 2.2 | 3.0 | <0.001 |
| Least deprived quintile | ||||||||||||
| Anxiety and/or depression | 234.3 | 209.3 | 200.3 | 218.3 | 145.5 | 111.7 | 105.7 | 117.7 | 1.9 | 1.7 | 2.0 | <0.001 |
| Hypertension | 127.1 | 87.1 | 83.3 | 90.9 | 110.4 | 71.5 | 68.3 | 74.7 | 1.2 | 1.1 | 1.3 | <0.001 |
| Hearing loss | 97.2 | 79.9 | 74.2 | 85.6 | 75.8 | 56.7 | 52.4 | 61.1 | 1.4 | 1.3 | 1.6 | <0.001 |
| Chronic kidney disease | 112.5 | 68.7 | 65.3 | 72.0 | 102.3 | 61.0 | 58.2 | 63.7 | 1.1 | 1.0 | 1.2 | 0.002 |
| Asthma | 50.4 | 54.8 | 48.9 | 60.7 | 43.1 | 40.8 | 36.3 | 45.3 | 1.3 | 1.1 | 1.6 | 0.001 |
| Irritable bowel syndrome | 57.1 | 52.0 | 47.2 | 56.8 | 37.8 | 31.0 | 27.7 | 34.4 | 1.7 | 1.4 | 1.9 | <0.001 |
| Musculoskeletal disorders | 62.3 | 48.9 | 44.4 | 53.4 | 48.2 | 35.3 | 32.1 | 38.6 | 1.4 | 1.2 | 1.6 | <0.001 |
| Diabetes | 63.5 | 46.1 | 42.8 | 49.4 | 60.1 | 41.2 | 38.5 | 43.9 | 1.1 | 1.0 | 1.2 | 0.180 |
| Constipation | 53.3 | 39.3 | 35.4 | 43.1 | 38.3 | 23.8 | 21.6 | 26.0 | 1.7 | 1.4 | 1.9 | <0.001 |
| Cancer (diagnosis in last 5 years) | 53.8 | 38.1 | 35.1 | 41.1 | 26.8 | 16.9 | 15.3 | 18.5 | 2.3 | 2.0 | 2.6 | <0.001 |
By age groups and deprivation
Anxiety and/or depression were the most prevalent condition in all age groups amongst unpaid carers except 75+ years group, with higher prevalence than non-carers. The difference between unpaid carers and non-carers decreased with increasing age. Rate ratio for anxiety and/or depression between unpaid carers and non-carers was 2.3 (95% CI 2.0–2.6) for under 25 years old and reduced to 1.5 (1.5–1.6) for 45–54 and over 75 year olds (Table 1). The prevalence of 8 conditions (amongst the top 10) was higher for unpaid carers living in the most deprived areas than the least except for hearing loss and cancer, e.g. anxiety and/or depression (287.6 per 1000 population versus 209.3 per 1000 population) and hypertension (88.1 versus 87.1). The difference between unpaid carers and non-carers was marginally higher in the most deprived areas except for anxiety and/or depression (rate ratios, the most: the least deprived quintile 1.6: 1.9) (Table 1).
Multimorbidity
Prevalence of multimorbidity was higher in unpaid carers compared to non-carers at all ages and deprivation quintiles. Over half of unpaid carers between the age of 64 and 75 live with multimorbidity (533.3 per 1000 population versus 391.9 amongst non-carers). The difference in multimorbidity was greatest amongst the younger population and declined with increasing age. Amongst the most deprived communities, unpaid carers under 25 had 3.5 times (CI 2.6–4.6) the rate of multimorbidity compared to non-carers and the rate ratio reduced to 1.3 (CI 1.2–1.4) for over 75. Within least deprived communities, rate ratio was 6.1 (CI 3.7–10.6) for under 25 and reduced to 1.3 (CI 1.2–1.4) for over 75 age group.
Conclusion/discussion
Main finding of this study
This study created a unique and reproducible e-cohort of unpaid carers in Wales with 91 220 identified. Findings suggested that unpaid carers experience poorer health comparing to non-carers and the gap exacerbated amongst younger groups and in deprived communities. The health needs of unpaid carers are usually overlooked due to the focus on the health of the carees and juggling with other responsibilities.
What is already know to this topic
Previous studies found providing care have detrimental impact on unpaid carers’ own health and wellbeing, whilst with limited quantitative evidence.
What this study adds
The e-cohort can be used for rapid analysis in research and evaluation towards tailor-made support for unpaid carers in future. From policy making perspective, health services and policy should take flexible approaches for unpaid carers to access healthcare and focus on early identification and prevention for highlighted groups and conditions.
Limitations of this study
There are certain limitations with this study. The identification of unpaid carers in routine data relies on the caring status to be recognized and recorded in surveys and clinical records. There are systematic differences in recording non-health patient information across healthcare settings. These barriers contribute to underestimating population size and bias in quantifying health needs, but highlighting the vital need of standardized approaches in recognizing and recording unpaid caring status.
Acknowledgments
We would like to thank Naheed Ashraf (Regional Strategic Carers Programme Manager, Aneurin Bevan University Health Board) and Aled Davies (GP, Rhondda Urgent Care Centre, Cwm Taf Morgannwg University Health Board) for their input on validating the clinical code list to capture unpaid caring status. We would like to thank Mark Llewellyn (Professor of Health and Care Policy, University of South Wales), Claire Morgan (Director, Carers Wales) and Jake Smith (Policy Officer, Carers Wales) who provided valuable comments on an earlier draft of this work, as well as colleagues in Public Health Wales who supported the delivery of this study: Claudine Anderson, Laura Bentley and Karen Hodgson.
We would also like to thank the University of Manchester ClinicalCodes.org project—‘An online clinical codes repository to improve validity and reproducibility of medical database research’ and Cambridge University for making the clinical codes available.
This study utilizes anonymized data held in the SAIL Databank. We would like to acknowledge all the data providers who make anonymized data available for research.
Fangzhou Huang, Senior Lecturer
Jiao Song, Senior Scientist (Statistics)
Alisha R. Davies, Professor, Consultant in Public Health, Head of Research and Development
Contributor Information
Fangzhou Huang, School of Management, Swansea University, Swansea SA1 8EN, UK.
Jiao Song, The Communicable Disease Surveillance Centre, Public Health Wales, Cardiff CF10 4BZ, UK.
Alisha R Davies, Research and Evaluation Division, Knowledge Directorate, Public Health Wales, Cardiff CF10 4BZ, UK.
Funding
This work was supported by Public Health Wales.
Ethics statement
This study is based on anonymised routinely collected electronic health records. All routinely collected anonymised data held in the SAIL Databank are exempt from consent due to the anonymised nature of the databank (under section 251, National Research Ethics Committee (NREC)). We have applied to and been granted approval by the independent Information Governance Review Panel (IGRP) for permission to conduct this study (project number 1213). The IGRP contains independent members from the NREC and the British Medical Association (BMA), as well as lay members. The review process has checked that the study is useful, not a service evaluation, and will not break anonymisation standards.
Data availability
All data involved in this study are from Secure Anonymised Information Linkage Databank as stated in Statistical Analysis section and Ethics Statement.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
All data involved in this study are from Secure Anonymised Information Linkage Databank as stated in Statistical Analysis section and Ethics Statement.