Overlooked and under‐evidenced: Community health and long‐term care service needs, utilization, and costs incurred by people with severe obesity

Numbers of people with severe obesity (BMI ≥ 40 kg/m2), with need for community health and long‐term care (LTC) services, are increasing, but documentation is lacking. We identified individuals with severe obesity known to community health and care professionals in a representative United Kingdom region and used an investigator‐administered questionnaire to record needs and use of community health and LTC services. Data were verified against health and LTC records. Local and published sources informed detailed micro‐costing. Twenty‐five individuals (15 women) consented, aged 40–87 (mean = 62) years, BMI 40–77 (mean = 55) kg/m2: 20 participants (80%) were housebound. Twenty‐two different cross‐sector community health and LTC services were used, including community equipment service (n = 23), district nursing (n = 20), occupational therapy (n = 14), and LTC (n = 12). Twenty‐four (96%) participants used three or more services, with longest care episode lasting over 14 years. Total annual service costs incurred by participants varied from £2053 to £82 792; mean £26 594 (lower estimate £80 064; mean £22 462/upper estimate £88 870; mean £30 726), with greatest costs being for LTC. Individual costs for equipment (currently provided) and home adaptations (ever provided) ranged widely, from zero to £35 946. Total mean annual costs increased by ascending BMI category, up to BMI 70 kg/m2. This study provides a framework with which to inform service provision and economic analysis of weight management interventions. People with severe obesity may need sustained care from multiple community care services.

What this study adds?
• People with severe obesity, particularly the housebound, including those <65 years, used multiple community care services long-term.
• Long-term care, occupational therapy, and district nursing services provided the highest dose of care to participants. Weight management input was limited.
• The greatest costs were for local authority funded services of long-term care and occupational therapy.

| INTRODUCTION
General population health surveys indicate that the proportion of people with severe obesity (Body Mass Index (BMI) ≥40 kg/m 2 ) has grown more rapidly than other BMI groups since 1995. 1 Numbers are increasing internationally. 2 In England and Scotland adult prevalence rates are 3% and 4%, respectively, 3,4 with a recent estimate predicting English prevalence would more than double by 2035. 5 In the United States (US), adult prevalence has already exceeded 9%, with prevalence for women reaching 11.7%. 6 Total healthcare costs for people with severe obesity are an estimated 50% higher than those of healthy weight individuals. 7 However, such estimates are unlikely to be comprehensive. People with severe obesity frequently experience functional limitations and long-term conditions, 8,9 needing skilled input from community-based nursing 10 and allied health professionals (AHPs) such as podiatrists, physiotherapists, and occupational therapists (OTs). Definitions of total healthcare costs vary globally but largely focus on medically oriented services (inpatient, ambulatory and medication). 7 Just two of the 75 international studies reviewed specifically mentioned nursing, and only one mentioned Allied Health services. 7 Consistent with this, growing evidence suggests increasing need for long-term care (LTC) for people with severe obesity. LTC services provide formal (paid), ongoing care for individuals with a functional limitation or activity of daily living (ADL) restriction, usually in a nonhospital setting. 11 When given at home by professional care staff, care is often supplied as a formal home care 'package of care' (PoC), evolving from more traditional informal (unpaid) provision given by families. 12 Analysis of the English Longitudinal Study of Aging (adults ≥65 years) found people with severe obesity had double the need for formal home care at nearly double the cost, compared with an individual of BMI 23 kg/m 2 . 13 Additionally, people with BMI ≥45 kg/m 2 were nearly six times more likely to use formal home care than those with BMI 18.5-24.9 kg/m 2 . 14 For people needing residential care, US nursing homes show a steady rise in admissions for those with severe obesity, 15 with staff from care homes in England and New Zealand reporting similar trends. 16,17 LTC systems vary widely by country, with differences around terminology, funding, and accessibility, making discussion at international level complex. 11,12 However, many LTC systems are experiencing common drivers for change: burgeoning numbers of older people and individuals with non-communicable diseases, 12 including obesity. 18 These drivers impact the sustainability of current systems, prompting evolution. 19 Yet access to robust LTC data can be difficult, 11 19 Public sector social care costs for England reached £26 billion in 2020/1. 21 Given these costs, a better understanding of service utilization is essential.
Responsibility for provision lies with local authorities, who commonly apply thresholds relating to functional status and age (≥65 years), with varying degrees of means testing. 22 Devolved government means some differences between the four UK nations, such as free personal and nursing care for adults ≥65 years in Scotland. 22 However, in all four countries, adults who meet the relevant needs and means tests are eligible for state-funded care. 22 This study was precipitated by the lead investigator's clinical observations as a district nurse, on care provided by community health and LTC services to people with severe obesity. They found a lack of evidence to support service development and inform person-centred care, particularly for people who are housebound. 23,24 This gap prevents fully comprehensive economic costings of obesity's impact, leading to a potential underestimation of the benefits of weight management interventions. 25 This then impedes informed decision-making regarding interventions and policies, 14,25 and hampers service development. 10 The aim of this study was to document individual-level community health and LTC service usage for an exemplar cohort of people with severe obesity.
In illustrating the need for, and range of, services used, and costs involved, it highlights a new area for research, signposting hitherto neglected data sources.

| Setting
A Scottish local authority area, broadly representative of the Scottish general population by age and long-term health conditions. 26

| Participant selection
People with severe obesity are often considered a 'hard-to-reach' population, so purposive sampling was used, with potential participants recruited via community professionals ( Figure 1) between February-December 2020. Eligibility criteria were, adults aged 16 years and over, in receipt of care services, able to provide informed consent, and identified as likely to have a BMI ≥40 kg/m 2 . Due to the undocumented nature of the study population, participant numbers were unclear at the study's outset. Sample size was dictated by balancing study resources with the aim of robustly evidencing exemplar cases and achieving data saturation of the type and scale of services used.
Potential participants were excluded if community professionals deemed them unsuitable due to potential for distress, or safety concerns in their home environment. To indicate the wider number of people with severe obesity using services, community health services and local authority run LTC services were asked to conduct a retrospective caseload 'census' for eligible people. Basic demographic details were collected for these individuals.

| Study design and data collected
Participants were visited at home by the lead investigator, who obtained written informed consent for participation. Participants' height and weight were measured using specialist scales and alternative height measures if required. 27 The investigator then administered a 'Help at Home' questionnaire (see Supporting Information), gathering information on help needed at home. This was based on methods used by Health Survey England to assess formal and informal help needed with Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living. 13,28 Self-reported use of community health, OT, and social work (SW) covered the preceding 12 months; LTC services (care home and home care PoC) covered the preceding month. Data also included medical equipment and housing adaptations.
Participants' health and LTC records were used to verify selfreported data. Unlike hospital episodes which are typically measured in days, community episodes which frequently involve providing supportive care for long-term conditions, can last months, sometimes years. Due to the potential for poor recall (such as length of care episode), participants agreed that any discrepancies would be resolved by using recorded data.
Participants provided data on both informal (non-paid) care and private paid domestic help, e.g., help with housework or shopping.
However, these data were excluded from the present analyses. Data were not collected about any private contributions to participants' care costs, due to the very high degree of comprehensive publicly funded care in Scotland and the difficulty of collecting such potentially intrusive data. Given limited study resources the focus was on largely unevidenced LTC, nursing, and AHP data sources. General practitioner (GP) services were excluded from detailed data collection partly due to added data governance complexity, and the existence of a more developed evidence base. 7 Data collection coincidentally occurred during the COVID-19 pandemic, necessitating a largely operational approach. This meant minimizing face to face contact, wherever possible undertaking data collection alongside essential care provision, and using NHS-approved COVID-19 mitigation measures, such as personal protective equipment. A subset of participants undertook a semi-structured qualitative interview regarding their experience of services (to be reported elsewhere), with participants who completed both the questionnaire and interview receiving a £10 shopping voucher in appreciation of their time.

| Data analysis
Electronic community health records clearly documented duration and frequency of visits for health staff by service. Home care PoC schedules were routinely summarized in local authority electronic records when starting or changing provision, providing robust timings.
Thus, verified dose of care was calculated for each participant using frequency of contact by duration of contact giving a monthly dose of care (hours) by service (further detail is provided in Supporting Information).
Verifying estimated duration of contact for local authority employed community OT and SW roles was more complex. This was because local authority electronic care records were largely narrative, with no indication of staff time input. It also reflects that other than for intermediate care staff, such as Rapid Response teams, much input is indirect, e.g., sourcing equipment, rather than direct care provision with individuals. 29 Little guiding literature exists around estimation of staff time in such roles. 29 Common practice in such situations is to consult with experienced professionals for guidance. 30 Discussion with local OT Team leads produced three broad time bands of low (<5; median 2.5 h), medium (5-9.9; median 7.5 h), and F I G U R E 1 Services approached for recruitment of participants. (Services in red primarily local authority provided long-term care services; services in blue primarily health provided services; services in purple more mixed/jointly-provided services.) high (10-15; median 12.5 h) hours per week input. The same team leads used their knowledge of the caseload work for participants to allocate participants to low-medium (referred to hereafter as 'low') or medium-high (referred to hereafter as 'high') time bands, allowing a directed sensitivity analysis. A mean staff time estimate was calculated of 5 h for low time band participants and 10 h for high time band participants. These time estimates were then used to calculate the most likely estimated OT costs, used as the base case. For the small number of participants (n = 5) with SW input, no local or published guidance was available. Low time band estimates were therefore applied, to keep costs conservative. OT/SW roles involved largely indirect input in support of both LTC and community health services, therefore, are presented as distinct OT/SW outcomes for clarity.
Local and published sources 29,31 applying 2019/2020 values, informed a micro-costing of participants' monthly dose of care by service, multiplied by 12 for annual costs. Annual costs for community health, LTC, and OT/SW sectors were combined to give a total annual cost for publicly funded services used by each participant and to calculate mean cost per participant across the sample. Equipment (currently provided) costs and adaptations costs (ever provided) were calculated separately to give a total figure, as these were typically one-off, longer term costs. 29 Detailed micro-costing methodology is in Supporting Information.
The costs presented in Results are the base case cost estimates using the mean OT/SW time estimates outlined above. Sensitivity analysis was also undertaken using the lower-and upper-time estimates for OT/SWs (see Table S2 for summary figures), with costs presented accordingly.
Care home costs greatly exceeded maximum home care costs, producing notably different values for the small number of participants in care homes. Therefore, a second sensitivity analysis was undertaken, replacing care home costs with either mean (based on home care users only) or maximum planned home care costs. Maximum home care is arguably more applicable, as admission to care home frequently occurs when care needs exceed that deliverable as a home care PoC. Mean cost quoted in Results is the base case OT/SW costs and original care home costs, unless otherwise stated.

| RESULTS
Results are presented in the following categories: Demographics, service utilization, help provided, and costs.

| Demographics
There were 25 participants and 32 non-participants. Reasons for nonparticipation reflected the exclusion criteria and are detailed in

| Service utilization
As a group, participants were using 22 different community health and LTC services (Table 2), ranging between 1 and 12 services by participant (mean 7, median 7) (Figure 2A). Twenty-four (96%) participants received three or more services, with 17 (68%) receiving six or more services.
LTC use ranged from 1 to 132 (mean 22) months, four (16%) participants were >5 years, with service still ongoing. OT/SW input was generally episodic (mean 8 months), finishing once equipment, or adaptation, or PoC was provided. However, input varied, including one individual with very long-term input at 62 months, with service still ongoing. District nursing recorded the longest episode at 174 (mean 38) months, with 12 (48%) participants receiving district nursing care for ≥2 years, and five (20%) participants for ≥5 years.

| Costs
Total annual costs for community health, LTC and OT/SW services varied from £2053 to £82 792, mean £26 594 (Table 3). Figure 2C plots individual participant totals broken down by sector, demonstrating the wide range: Nine (36%) participants had costs <£10 000, ten  Costs by sector ( Figure 2D)   Greater numbers also enabled better comparisons, making these groups the focus of costing analyses by BMI group.
Sensitivity analysis replacing care home costs with maximum and mean home care costs (£36 288 and £18 108, respectively) showed an increase in mean LTC costs by ascending BMI group when analysed across all participants ( Figure 2D). This increase carried through to total annual mean cost when using maximum home care costs but not mean home care costs. Analysis of LTC users only, intensified costs markedly, such that mean total costs for all LTC users were more than four times that of participants with no LTC use (£45 931 vs. £8745) ( Figure 3A). Across all participants, mean annual cost per participant was £26 594, rising to £45 931 for analysis of LTC users only. Mean LTC costs for participants from SIMD deciles 1-5 (£15 299) were double that for those from SIMD deciles 6-10 (£7214) (Figure 3B), partially driven by care home costs being included in the former. Sensitivity analyses, using mean and maximum home care costs instead, found that even without these, mean LTC costs remained greater for SIMD 1-5 (£9387 using mean home care; £11 526 using maximum home care), although to a lesser extent, with total mean costs more similar for both SIMD groups. In contrast, mean OT/SW costs were higher for SIMD 6-10 than SIMD 1-5 (£12 150 vs. £9680, respectively) largely because these participants had input from both OT & SW.
The proportion of participants using LTC increased by age group,  Costs generally reflected patterns of utilization, with three groups broadly definable ( Figure 2C): a lower cost group (<£6000) largely using just community health services, a medium cost group (£8000-

| Long-term care utilization
The findings support previous evidence from population studies demonstrating that severe obesity is associated with high LTC utilization and costs. 14 25 given the wide BMI range found in this study, with potential differences in service utilization by ascending BMI group.

| Role of weight management
Outcomes of poor quality of life 44  The increase in remote weight management services resulting from the COVID-19 pandemic may offer future development potential for this under-served population, 46 as do the new wave of effective anti-obesity medications. 47 Importantly for this population, shifting away from a weight-centric approach to one focused on wider person-centred outcomes, 48 including maintaining or achieving functional independence, potentially holds benefit for both individuals and service providers. Training for community staff, who often have sustained input with individuals, but feel ill-equipped to discuss weight, 49 could lead to health gains.

| Strengths and limitations
This study's strength is its robust presentation of real-world evidence, to the authors' knowledge not available elsewhere, of detailed community health, OT/SW, and LTC service utilization and costs. For researchers who may not be familiar with community services, it highlights the type of services that need further research, alongside methodology for micro-costing. Hopefully the resultant visibility of OT, district nursing, and LTC services will encourage further research, ideally through collaboration with practitioners.
A potential limitation is that service usage, and hence costs, were not solely attributable to severe obesity. 50 Participants had multiple other comorbidities, some related to raised BMI including lymphoedema, stroke, cardiovascular disease and diabetes. 38 Other comorbidities appeared independent of raised BMI such as multiple sclerosis, spina bifida and ulcerative colitis. Collecting data on all medical comorbidities was outside the study's scope but, where disclosed by the participant as relevant to the help needed at home, these were noted. This included verifiable data for all participants regarding diabetes status, with nine (36%) having Type 2 diabetes. Notably for LTC services, service utilization is arguably a broad proxy indicator of functional limitation, commonly mediated by presence of an informal carer. 33 Future studies to estimate attributable costs could use regression methods with cohorts of those with and without severe obesity, matched for sex, age, socioeconomic status, and chronic disease.
A further limitation is the small number of participants, limiting examination of associations between variables.

| CONCLUSION
People with severe obesity, including those under 65 years, may need multiple, long-term, or episodic, costly inputs from community health, OT/SW, and LTC services. This care needs to be recognized in cost of obesity studies and economic analyses of weight management interventions. Service providers need to plan for the specialist needs of this increasing population, particularly the housebound.

AUTHOR CONTRIBUTIONS
Kath Williamson conceived and designed the study, carried out data collection, data analysis and interpretation, and wrote the manuscript.
Eleanor Grieve contributed to study design, data analysis and interpretation, and edited the manuscript. David N. Blane supervised data analysis and interpretation and edited the manuscript. Michael E. J.
Lean conceived and designed the study, supervised data collection, data analysis and interpretation, and edited the manuscript. All authors were involved in writing the manuscript and had final approval of the submitted and published versions.