Unmet social care needs of people living with and beyond cancer: prevalence and predictors from an English longitudinal survey

This study estimates the prevalence of unmet social care needs of people over 50 living in England with cancer and the effect of cancer on unmet needs.

As these difficulties develop people LWBC may receive help in a variety of ways, including help from family and friends or professional care at home. The extent to which informal carers can provide the care needed will vary enormously between individuals and is likely to have an impact on the physical, emotional and mental health of the carers themselves. Carer breakdown is a common precursor or trigger-point in people seeking help from formal care services. In the UK, the social care sector provides much needed support with activities of daily living, such as washing, dressing and meals, when people are unable to meet these needs themselves. However, unlike healthcare, which is provided by the NHS, social care is not free at the point of delivery. This means that anyone who is currently in need of help and support, due to the consequences of living with cancer, has to either fund this care themselves or be assessed for help through their Local Authority. Receipt of publicly funded social care will depend on a number of factors, including whether the individual meets the required 'eligibility criteria' (i.e., are their needs severe enough needs to warrant social care input) and means testing to establish whether they can afford to fund this care themselves. 8 Often people will receive help for some but not all of their needs or even no help at all. Increasing needs among people LWBC and constraints in the supply of social care services and availability of informal carers mean that there is a growing risk that people's daily needs are not met. The implications of unmet needs for people with cancer are significant, both in terms of people's welfare and public spending. Unmet needs are linked to worse mental health, financial distress and increased use of health care services for both cancer patients and their carers. 3 Despite the important implications, the evidence on the prevalence and determinants of unmet needs of people LWBC in England is limited. One exception is a report by Macmillan Cancer Support, 3 which provides a first set of evidence on the social care needs of people with cancer. However, based on a small size online survey, this study is likely to suffer from representativeness issues and lacks richer data on other individual characteristics to allow a more detailed analysis of the determinants and distribution of these needs.
Our study aims to fill this evidence gap by: (i) providing nationally representative evidence on the prevalence of unmet social care needs of people LWBC in England and (ii) estimating the association of cancer with unmet needs, controlling for other determinants.

| Data and study population
We used observational data from the English Longitudinal Study of Ageing (ELSA) [14]. ELSA collects longitudinal multidisciplinary data from a nationally representative sample of the English population aged 50 and over. 1 The survey began in 2002/2003 and interviews of the original and refreshment samples, known as 'waves', take place every two years. 2 The available data consist of eight waves up to 2016/17. After a scoping review of other secondary data sources, the ELSA dataset was deemed the most suitable for this study because it uniquely combined rich data on cancer prevalence, social care needs and help received, as well as other individual characteristics. The UK Household Longitudinal Study (UKHLS) was another study with similar information, but due its very small sample size could not be used for statistical analysis. Comparisons of the socio-demographic characteristics of ELSA participants against estimates from the national census indicate that the initial sample was reassuringly representative of the English population. 9 All ELSA waves were pooled together. The final sample size was

| Measurement of unmet social care needs
The definition of unmet social care needs has been a long-standing debate in the literature. Conceptual considerations pertain to issues around the type and severity of limitations, which can be classified as needs and the conditions under which they can be viewed as unmet. 10 questions, respondents answer with a yes or no. If they answer yes, indicating need with a specific ADL, they are then asked whether they receive help or not for that need and from whom. If they receive help they then report whether they receive formal and/or informal help. Formal help includes help from social or health services such as home help and informal help includes help from family members, friends and neighbours. ELSA also records the intensity of informal care received and we could define intensive informal care as care provided over 20 h a week. 3

| Other measures
We used self-reported measures from ELSA on gender, age, educational qualifications, family structure, employment status, ethnic origin, comorbidities, wealth and pain. Educational qualifications were grouped into three categories: below O-level, at O-level, or higher than A-level. Family structure included an indicator variable for whether people live in a couple and whether they have at least one child of any age living in the household. Employment status was derived from a self-reported ELSA question asking people to best describe whether their current situation is: employed, self-employed or out of the labour market (whether retired, unemployed or carer).
An indicator variable was constructed for whether respondents are currently in paid employment or self-employment. A dummy variable for non-white was included to capture ethnicity. Comorbidities measures collected in ELSA with sufficient observations included indicators for arthritis, high blood pressure, asthma, diabetes, osteoporosis and dementia. Total net non-housing household wealth was split into quintiles. Measures for pain included indicator variables for whether respondents often experience no pain, mild, moderate or severe pain. We also included dummy variables for regions and interview waves to account for regional differences in the supply of formal care services and structural changes over time.

| Statistical analysis
We estimated the mean, standard deviation (SD) and 95% confidence interval (CI) of the prevalence of unmet social care needs among people LWBC. A logistic regression model with individual random effects was used to estimate the degree of variance in unmet needs explained by cancer and the other predictors and odds ratios (OR) and 95% CIs were reported. People with cancer often experience pain which can contribute to higher needs (6). We added measures of pain severity stepwise in the regression model to explore whether pain explains any additional variance in unmet needs, acting as a possible mechanism of the effect of cancer. The analysis was run in Stata 15.1.

| Prevalence of unmet social care needs
People with cancer have a higher rate of unmet social care needs. The prevalence rate is 9% (SD = 0.29; 95% CI: 8.3-10) among people LWBC compared to 6% (SD = 0.24; 95% CI: 6.1-6.5) among people without cancer (Table 1)  respectively. Belonging to a higher non-housing wealth quintile is associated with increasingly lower odds of unmet social care needs.

| Predictors of unmet social care needs
There is also regional variation in the prevalence of unmet needs with London and regions in the Midlands and the North having higher odds of unmet needs compared to the South East, although only two of these regional effects were statistically significant.

| DISCUSSION
We found that 9% of people LWBC have unmet social care needs.
While this is lower than evidence found in other studies 4 After controlling for pain, cancer still had a positive and statistically significant relationship with unmet social care needs that was not explained by other predictors. Further research is required to explore what other factors explain the higher prevalence of unmet needs among people with cancer. Our analysis has shown that this is due to more severe ADL limitations among people LWBC (Table 1).
We explored pain as one possible mediating mechanism for worse ADL limitations, but there could be others such as fatigue, which is particularly high among people with cancer. 7 Due to limited data on fatigue, we left this for future research. One cannot also exclude a priori possible supply side constraints in accessing care. We found that a large proportion (81%) of people with needs severe enough to receive social care support, still do not get the support they need, regardless however of cancer diagnosis ( Table 1). The estimated regional effects were statistically significant for certain regions, but not others, suggesting that differences in unmet needs may sometimes but not always be due to structural regional supply differences.
Given that the provision of social care services takes place at the LA level, future research should consider more localized evidence to understand possible limitations in the supply of appropriate services and information to cancer patients.

| Study limitations
First, this study relied on survey data. As with any self-reported data, it is possible that there is a degree of over-/under-reporting bias, which could also differ by gender. Although we controlled for a number of confounding factors and individual random effects that could be correlated with possible reporting bias, we acknowledge that this may still be a limitation. Second, our analysis did not account for differences in the type or stage of cancer due to lack of detailed

| Clinical implications
We provided evidence that people with cancer have a high prevalence of unmet needs that go beyond their purely medical needs.
This highlights the importance of assessing people LWBC for both their ongoing medical and social care needs through integrated care policy and practice. Such an approach is more likely to address people's needs and mitigate knock-on effects on individual and carer wellbeing and pressures on other parts of the health system.
It can also recognise the interdependencies between health and social care needs and provide as a result a more efficient model of care such as for example through the integrated management of pain.

| CONCLUSIONS
People LWBC have a higher than average rate of unmet social care needs. This is because they have more severe limitations with ADLs and the help they receive does not meet these needs adequately. The pain associated with treatment and the long-term implications of cancer is also related to more severe social care needs. A more integrated and person-centred approach to cancer care, that takes into account the interdependencies between health and social care needs is thus more likely to address unmet needs and consequent adverse implications for people with cancer as well as the wider health and social care system.