Adult social care in the United Kingdom is a broad term encompassing a range of activities which support people with disabilities with daily living. It includes home (domiciliary) care, day care and other care services. Provision of adult social care comes from a wide range of sources, depending on individual circumstances, including local authorities, independent sector and healthcare providers (formal care), and the families and friends of those who need such support (informal care). Public funded care is available via means testing to those with the highest need and least assets, and according the King’s fund, was provided to over 840,000 adults in the year 2018/19 (The King’s Fund, 2019). There is an increasing demand for adult social care, which is usually attributed to an ageing population (Silverman et al., 2013). However, not all older people require social care, with only about 9% of the older population receiving social care support in 2013/14 for example (Age UK, 2017), further there is evidence for increasing requests for funded social care amongst working age adults (The King’s Fund, 2019).
Musculoskeletal (MSK) diseases also typically increase with age. They are often both chronic and painful; as a result, they are the second most frequent cause of years lived with disability globally (Sebbag et al., 2019). In parallel to the increasing demand for social care, large international studies such as the Global Burden of Disease have highlighted the burden of MSK disease and pain is growing (Briggs et al., 2016). Importantly, however, commentators reflect that this burden must be an underestimate because it does not include the impact of the disease on either formal social care or informal carers (Hoy et al., 2015). Despite increasing with age, MSK disease can affect people of any age (Parsons, Clarke-Cornwell, and Symmonds, 2011). In particular, chronic pain (commonly MSK in origin) has been shown to affect a substantial proportion of working age adults, with reported prevalence in young adults (age 18–39 years) of between 18 and 30% (Fayaz et al., 2016; Public Health England, 2017). In the UK there is currently a complete absence of data to estimate social care service use in people with chronic pain and/or MSK disease.
In order to begin to address this absence of information, this study accessed a group of participants of a previous mobile health study on chronic pain. The study aims were to describe the type, quantity and duration of social care use in adults with chronic pain. These data are expected to be a preliminary step in investigating the individual, service and economic costs of chronic pain and MSK disease in the UK.
A cross-sectional survey about social care use was sent to participants of a large UK smartphone study investigating the association between weather and pain in order to understand their use of social care, both from formal providers and from friends, family and neighbours.
Between June and July 2019, previous participants of the Cloudy with a Chance of Pain study were invited via an email newsletter to take part in this online survey. The recruitment of participants to Cloudy and their follow-up (2016–2017) has been described in detail elsewhere (Dixon et al., 2019). Briefly, it was a mobile health study which recruited UK adults with self-reported chronic pain of at least 3 months duration who owned a smartphone, and invited them to complete a baseline questionnaire including information about diagnoses, then track their daily symptoms for up to six months while automatically collecting local weather data using the phone’s GPS. Cloudy participants were broadly representative of the chronic pain population in the UK (Druce et al., 2017). Participants were sent email updates during and after the Cloudy data collection period so that the study team could communicate progress and results. Via this email newsletter, the Cloudy study team sent their participants an email including information about this current study’s aims and links to a more detailed participant information leaflet and to the survey on social care use. The first question in the survey asked for consent to participate. If they did not agree to this, no more of the survey was viewable.
The survey was adapted from an existing social care interview survey (NATCEN SOCIAL Research, 2009). It collected data on whether participants needed help with activities of daily living (ADLs), how frequently help was needed and who provided it. The help included both formal social care services (provided by local authorities or private companies) and also informal care from family, friends and neighbours. In addition, participants could report if they had arrangements such as help from a housekeeper, cleaner, voluntary sector or warden of sheltered accommodation. Additional data were collected in the survey on demographics, employment status, and comorbidities. Multi-morbidity was identified in participants who reported a diagnosis of one or more chronic conditions in addition to their pain diagnosis. Partial postcodes (postcode district level) were collected, and the UK Data Service Geocovert tool identified all of the postcodes within that district (UK Data Service, 2021). This allowed calculation of the median postcode index of multiple deprivation (IMD) across the postcode district areas. The study was approved by the University of Manchester Ethics Board.
Descriptive statistics were used to describe the online survey participants, as well as who was providing care, the frequency and duration of care received, whether care was paid for and if so, how it was funded. Univariate logistic regression was used to identify any disease, demographic, employment and socioeconomic variables associated with social care received. Subsequently, a multivariable logistic regression model assessed which of these variables remained associated with care received amongst participants reporting any MSK diagnosis. As the study was preliminary work, the primary aim was to provide descriptive data, however a number of exploratory subanalyses were also conducted. Firstly, multivariable logistic regression assessed factors associated with informal care compared to those who did not receive care; subsequently ordinal logistic regression investigated factors associated with the total hours and frequency of care received. Missing data were few, and therefore were not imputed; the multivariable models were a complete case analyses. Data were analysed using STATA 14.
Of the 9401 Cloudy participants who received the email newsletter and reminder, there were 981 who consented and completed the survey, giving a response rate of 10.4%. Seven hundred ninety-one (81%) were female, median age 59 years, with age range of participants from 18–88 years (Table 1). Although the majority of participants were from England 830 (85%), there were 35 (4%) participants from Wales, 48 (5%) from Scotland and 12 (1%) from Northern Ireland (data missing for 27). Almost all survey participants’ chronic pain was musculoskeletal in origin, with 895 (95%) reporting this. There were however some participants who reported chronic pain in other sites in addition to MSK pain (Table 1). A large proportion of participants reported having multiple long term conditions (i.e. multi-morbidity), 712 (82%).
|ALL PARTICIPANTS N = 981||RECEIVED CARE IN THE LAST MONTH$N = 527||NO CARE RECEIVED IN THE LAST MONTH$N = 337||MISSING|
|Age med (IQR)||59 (50–66)||57 (47–64)||61 (52–68)||5|
|Female n (%)||791 (81)||452 (86)||251 (74)||11|
|Employment status n (%)||1|
|FT||134 (14)||54 (10)||70 (21)|
|PT||169 (17)||79 (15)||69 (20)|
|Self-employed||50 (5)||26 (5)||19 (6)|
|Student||7 (0.7)||4 (0.8)||2 (0.6)|
|Homemaker||23 (2)||12 (2)||10 (3)|
|Retired||360 (37)||151 (29)||143 (42)|
|Unable to work||221 (23)||188 (36)||21 (6)|
|Unemployed||16 (1.6)||12 (2)||3 (0.9)|
|Diagnosis reported n (%)*||929 (95)||516 (98)||313 (93)||11|
|Fibromyalgia||482 (49)||269 (51)||160 (47)|
|Rheumatoid arthritis||265 (27)||207 (39)||40 (12)|
|Arthritis (type not specified)||205 (21)||115 (22)||73 (22)|
|Ankylosing Spondylitis||128 (15)||73 (14)||55 (16)|
|Gout||56 (6)||33 (6)||23 (7)|
|Migraine/chronic headache||18 (2)||13 (2)||5 (1)|
|Neuropathic pain||115 (13)||82 (16)||33 (10)|
|Other (inc Psoriatic arthritis, hypermobility)||155 (18)
|Any MSk diagnosis n (%)||828 (95)||460 (87)||279 (83)||64|
|Multi-morbidity∞ n (%)||712 (82)||473 (90)||54 (36)||0|
From the total number of survey participants, 527/981 (54%) reported receiving help with ADLs in the last month. For over three-quarters of these participants, help was provided informally by family and friends (403/527, 76%) (Figure 1), and 238/527 (45%) reported receiving help from more than one individual. Help was paid for in 81/527 (15%) participants who received help, of which 40 arranged and paid for the help themselves, reporting no input from the local authority or local authority social care organisation. This left 41/527 (8%) for whom the local authority paid for, or arranged payment for these services. In addition, there were small numbers of participants (total 28/527, 2.8%) who received help from reablement teams and allied healthcare professionals, as well as support from wardens in sheltered accommodation (Figure 1).
The intensity of help received was relatively low for most, with 225 (46%) participants receiving care for a total of four hours or less per week. Nevertheless, a significant minority (103, 21%) required more than 20 hours per week (Figure 2a) and for the majority of participants 309 (59%), some help was needed at least daily, for varying amounts of time (Figure 2b and 2c). Participants requiring daily care also tended to require the greatest hours care per week (Figure 2c). There did not appear to be significant variation in the number of hours of care received or the frequency of care between those receiving formal or informal care (Figure 3a and 3b), although very occasional care (less than once per month) was more commonly provided informally.
In the multivariable logistic regression model, (n = 827), those who had help with ADLs in the last month were younger, odds ratio (OR) (95% confidence interval [CI]) 0.96 (0.94–0.98), and more likely to be female, OR (95% CI) 2.15 (1.38–3.34). In this sample, participants who reported a diagnosis of fibromyalgia and osteoarthritis were more likely to receive help compared to those who did not (OR (95% CI) 2.80 (1.84–4.26) and 1.52 (1.06–2.20), respectively (Table 2). For participants with more than one chronic disease (multi-morbidity), each additional disease was associated with a 50% increase in odds of receiving help OR (95% CI) 1.52 (1.25–1.85). Compared to full-time work, participants who were retired, unable to work or unemployed were also significantly more likely to receive help with ADLs, respective Ors (95% CI) 1.95 (1.10–3.43), 6.63 (3.53–12.44) and 4.22(1.06–16.90). In the subanalysis investigating factors associated with only informal care (compared to no care), similar results were seen (supplementary Table 1). Interestingly, although in the main model in Table 2, the association between rheumatoid arthritis and social care received approached, but did not quite, meet statistical significance; in the model with only informal care (versus no care) this association did reach statistical significance, OR (95%CI) 2.09 (1.09–4.03), however this model was unable to adjust for employment status as the outcome did not vary for some employment groups.
|ODDS RATIO||95% CONF. INTERVAL||P|
|Age (10yr agebands)||0.96||0.94||0.98||0.00|
|Unable to work||6.63||3.53||12.44||0.00|
|Number of co-morbidities||1.52||1.25||1.85||0.00|
This study has described social care use in participants with chronic pain in the UK. To our knowledge, this is the first time this has been done, adding to our understanding of the full impact, and therefore potentially societal and economic costs, of chronic pain. We have shown that a large proportion receive help with ADLs, and that for people with chronic, MSK pain, this care is given frequently. Of those receiving care, most did so on at least a daily basis. Further, the majority of care being provided is done so informally by family and friends.
The high proportion of informal care (76%) demonstrated in our study is higher than recent data from Health Survey for England in 2017, which found 68% of care users received only informal care (Brown L, 2018). It may reflect the younger demographic in our study; the number of participants in our study over the age of 60 was small compared to a typical care user population. Younger participants with pain may be more reliant on friends and family for their care, rather than seeking support from external services. The provision of adult social care, particular for physical disability, is usually considered of in terms of older people, however in our study, younger participants were more likely to receive support for activities of daily living than older participants. It is possible this is because younger people with more severe pain were more likely to respond to the survey. Nevertheless, this highlights an important group that are not the main focus of the wider discussion in social care, and warrants further investigation.
The social care use we have demonstrated in this study is not surprising in a population of people with chronic pain and a range of MSK diseases, given the disabling nature of these diseases. However, it is frequently not considered when assessing the overall cost (both financial and societal) of MSK morbidity. Further, there is increasing interest in prevention of adult social care use (Marczak and Fernandez, 2019), and, since the Care Act 2014 in the UK, such prevention is a statutory responsibility. Importantly, this responsibility is recognised to require input from across the health and social care fields to be effective (Department of Health and Social Care, 2014). Thus, a better understanding of the relationship between different long term health conditions and social care is important to develop and refine prevention strategies. Such understanding will also allow optimal resource allocation, vital in times where resources are more limited. Current projections for demand drivers of long-term care over the next 20 years assume rates of physical disability in adults over 30 remain unchanged, and changes in 18–30 group match those estimated in 2012 (Wittenberg, Hu, and Hancock, 2018; Hu, Hancock and Wittenberg, 2020). These data appear to underestimate the increasing prevalence of MSK disease in both the UK and worldwide (Sebbag et al., 2019; Safiri et al., 2020). Our study also demonstrated the significant contribution of multi-morbidity to social care use; in our study population the likelihood of social care being provided increased by 50% for each additional chronic disease reported. This is equally under-investigated as a demand-driver for care, and not included in current projection models (Wittenberg, Hu, and Hancock, 2018) despite the association being recognised elsewhere (Stafford et al., 2021). These models do project that informal care must increase to meet demand, in its absence more paid care will need to take its place, bringing significant financial burden to the public purse. Our findings suggests MSK disease may be an important demand driver of this.
Although, as pilot data, the data in this study are insufficiently robust to convert to economic estimations, future work expanding on these data could refine projections of disability prevalence over time, and subsequently care needs. In the CPEC long-term care projections model, Hu et al. recognise disability as a crucial factor in determining need for long-term care, rather than age alone (Hu, Hancock and Wittenberg, 2020). Potentially, the nature of the disability and the relationship between chronic disease and disability may also be influential factors. Therefore, incorporation of data modelling the relationship between chronic diseases, disability and care, within models such as the CPEC could have significant impact.
There are limitations to our study. Diagnoses were self-reported and therefore associations seen with individual diagnoses may be subject to misclassification; for example, participants may have mistakenly thought their diagnosis was rheumatoid arthritis when in fact it was osteoarthritis. Our response rate was small, although for email newsletters, a 10% response rate is considered good (Campaign Monitor, 2020). However, it remains that our sample may be subject to non-response response bias as we cannot be certain it was fully representative of the chronic pain population. However, the demographics were similar to the original Cloudy with a Chance of Pain study from which we recruited (Dixon et al., 2019), and which was in turn broadly representative of a chronic pain population (Druce et al., 2017). That said, we acknowledge that participants at both the younger and older ends of the spectrum were under-represented; this may in part be due to lack of access to, or familiarity with, smartphones required for the original study in the oldest age groups. There was also over-representation of female respondents. MSK pain is more common in women, and women are recognised to be more likely to respond to traditional surveys (Flüß et al., 2014; Korkeila et al., 2001); nevertheless the proportion of women was still higher than would be expected. The Cloudy authors postulated this may be due to their original recruitment strategy, as there is some evidence women are more likely to adopt mobile health apps (Carroll et al., 2017). Notably, the proportion of female respondents was identical to the Cloudy study, suggesting we had not introduced further selection bias in this survey. Finally, very few participants had a non-MSK diagnosis associated with their chronic pain, therefore we are not able to draw strong conclusions for that group. The study was strengthened by adapting the survey from one developed previously by the National Centre for Social Research (NATCEN SOCIAL Research, 2009). Further, the use of Cloudy participants allowed us to obtain a large national sample relatively quickly, and provide a snapshot of self-reported social care use in a population of people with chronic pain and MSK conditions in the UK.
In conclusion, this study has demonstrated that adults with chronic MSK pain have high levels of social care use in the UK. It has provided initial insights into the type and frequency of this care, with most participants requiring care at least daily but for four hours or less per week. For more than three-quarters of respondents, care was provided informally by family and friends. It is therefore a potential hidden cost of chronic MSK pain on society, in terms of both economic and social resources. This study has set the research agenda, identifying that we need more representative samples, ideally using linked, routinely collected health and social care data, which will allow us to understand the impact of MSK pain and MSK disease on social care across the whole population.
The authors would like to acknowledge the contributions of Laura Boothman and Ollie Phelan of Versus Arthritis, for their assistance in adapting the survey.
JH is funded via NIHR Clinical Lectureship in Rheumatology.
The authors have no competing interests to declare.
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