Quantifying the costs of hospital admission for families of children with a febrile illness in the North East of England

Abstract

Objective

To assess the financial non-medical out-of-pocket costs of hospital admissions for children with a febrile illness.

Design

Single-centre survey-based study conducted between March and November 2022.

Setting

Tertiary level children’s hospital in the North East of England.

Participants

Families of patients with febrile illness attending the paediatric emergency department

Main outcome measures

Non-medical out-of-pocket costs for the admission were estimated by participants including: transport, food and drinks, child care, miscellaneous costs and loss of earnings.

Results

83 families completed the survey. 79 families (95.2%) reported non-medical out-of-pocket costs and 19 (22.9%) reported financial hardship following their child’s admission.

Total costs per day of admission were median £56.25 (IQR £32.10–157.25). The majority of families reported incurring transport (N=75) and food and drinks (N=71) costs.

Conclusions

A child’s hospital admission for fever can incur significant financial costs for their family. One in five participating families reported financial hardship following their child’s admission. Self-employed and single parents were disadvantaged by unplanned hospital admissions and at an increased risk of financial hardship. Local hospital policies should be improved to support families in the current financial climate.

FJSvdV and EL are joint first authors.

WHAT IS ALREADY KNOWN ON THIS TOPIC

• The cost-of-living crisis in the UK has increased poverty across the nation and increased the financial burden for many families.

• The North East of England has a higher-than-average level of deprivation.

• Paediatric hospital admissions can be expensive, incur unexpected non-medical out-of-pocket costs to families, but the majority of the literature is based on the healthcare system of the USA.

WHAT THIS STUDY ADDS

• One in five participating families in the North East of England reported financial hardship following their child’s admission.

• The majority of families had to pay for food, drink and transport costs, and total costs are median £56 a day.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

• This study creates awareness for hospitals in the UK and abroad to assess local financial impact of hospitalisation and instigate support systems for families most in need.

• Hospitals should support policies allowing all residential families to have adequate access to nutrition.

• Hospitals should support policies that ensure parking or public transport costs are mitigated for families in need.

Introduction

A child’s hospitalisation has broad consequences for the whole family. Not only is it a situational stressor, it can cause a significant financial and emotional impact on the family system with high levels of parental anxiety.¹

Parents are encouraged to stay with and be involved in their child’s care while in hospital.² This leads to significant disruption of day-to-day life with parents or carers needing to balance work and care obligations at home and in hospital, plus other social commitments.³ These adjustments can generate additional out-of-pocket costs. In the UK the out-of-pocket costs to families only concern non-medical costs, unlike the USA where hospitalisation includes both medical and non-medical costs. Non-medical out-of-pocket costs are the directs costs associated with, for example food, travel, childcare and loss of earnings. Excluded from these costs are expenses such as fees for medical services and medication.⁴ Although these costs to families are recognised, they are under researched and largely invisible.⁵

Previous studies from the USA estimated the average non-medical out-of-pocket costs range between US$97 and US$125 per day of a child’s hospitalisation.^{4 6} It is difficult to compare the US costs to the UK costs, due to differences in healthcare systems and funding. In the US families are required to cover medical costs, unlike the UK which has universal health coverage. Most literature on out-of-pocket costs originate from the USA and include both medical and non-medical costs. Literature from countries with universal healthcare is sparse. If the admission of a family member incurred high medical and non-medical out-of-pocket costs other children were more likely to have unmet health needs.⁷ In paediatric cancer, an economic evaluation review demonstrated non-medical costs can range between 0.2% and 283% of their families’ annual income.⁸ Additionally, 77%–94% of childhood cancer patients’ parents report work disruptions^{3 9} and in 42% of families a parent had to quit their job because of their child’s illness.⁹

Following current global events including Brexit, the UK entered a cost-of-living crisis in late 2021, throwing millions of families into poverty.¹⁰ The North East of England¹¹ has the second highest rate of child poverty in England,¹² with 25.9% of families living in low-income families.¹³ High levels of socioeconomic deprivation have been associated with increased emergency department attendance and admission in children.^{14 15}

Febrile illness is one of the most common causes of paediatric emergency department (PED) attendance and subsequent hospitalisation^{16 17} and, the most common complication for immunocompromised children.^{18 19} Febrile children often require additional tests to exclude serious illnesses and are admitted for empiric antibiotic treatment awaiting results.

This study aimed to assess the non-medical out-of-pockets costs of a febrile child’s admission.

Methods

Study design

This was a single-centre survey exploring non-medical out-of-pocket costs for families whose child attended or was admitted to hospital for febrile illness. It was conducted at the Great North Children’s Hospital, Newcastle upon Tyne, UK, March to November 2022. This tertiary hospital provides (supra)regional and (inter)national paediatric oncology and immunology services. The PED (23 000 attendances a year) serves the local population.

Reporting was in accordance with the Checklist for Reporting Results of Internet E-Surveys (online supplemental file 1).²⁰

Participants

The survey was distributed among a mixed group of families with febrile children ≤18 years of age presenting to PED. This group included both immunocompetent and immunocompromised patients.

Survey design

The survey consisted of two sections (online supplemental file 2). All questions were optional, except those regarding informed consent. Participants could review their answers until they submit the survey after the final page. The first section concerned informed consent and demographic data. We collected data on the participant completing the survey, the main carer in hospital, patient age, admission duration and number of admissions or PED attendances of the patient in the preceding 12 months.

The second section focused on financial costs, stated in British pound sterling (£). Participants were asked if they incurred any additional expenses, and could pick as many categories from the following: transport, food and drinks, loss of earnings, childcare, miscellaneous or none. Participants only completed detailed costs questions on their chosen categories.

For transport costs, we asked how the family travelled to hospital, and how much they spent on petrol, parking, public or other transport. For food and drinks costs, we asked how much they spent on themselves or their child.

If participants incurred additional childcare costs, we asked how many children required childcare, and how much was spent. Loss of earnings was explored by asking which family members had loss of earnings, how much they had lost, if the family received additional support, and if the admission caused financial hardship, that is, caused the family to be unable to meet basic living expenses for necessary goods and services.

Data collection

The open survey was created using Crowdsignal (http://www.crowdsignal.com). The survey was printed as a leaflet and disseminated with a QR code. Leaflets were handed out to eligible families to complete voluntarily at their convenience by scanning the QR code with an electronic device of choice directly in the Crowdsignal environment. No (financial) incentives were offered, no other offline, nor online advertisement was instigated for the survey.

The survey was tested by the research team on different electronic devices prior to fielding to the target audience. One response using the same device was allowed.

Statistical analysis

Total financial costs were calculated for each category. To identify the direct non-medical out-of-pocket costs incurred, we assessed the total costs excluding loss of earnings. To correct for admission length, we analysed the total costs per day.

Quantitative data were analysed using SPSS V.27, complemented by qualitative data from open-ended comment boxes. Data were non-normally distributed, and reported with medians and IQRs. Categorical data were reported with absolute frequencies and percentages.

Results

Recruitment and demographic data

Participants of 83 families completed the survey (figure 1), with a 97% completeness rate. Most surveys were completed by parents/carers (N=73, 88%). The majority of main carers in-hospital were mothers (N=70, 84.3%). The median age of the children was 7 years (IQR 3–11), and half were admitted for >2 days (N=44, 53%, table 1).

Figure 1. Geographical distribution of participants completing the survey (N=76). Seven participants did not provide their partial postcode.

Table 1

Participant demographics, stratified by group

	All (N=83)	Missing values
Patient age (years)	7 (3–11)	0
Admission duration		1
<1 day	38 (33.7%)
1–2 days	10 (12.0%)
>2 days	44 (53.0%)
Previous in-patient admissions or PED attendances ≤12 months (N)		6
1	27 (32.5%)
2	12 (14.5%)
3	11 (13.3%)
4	9 (10.8%)
5	5 (6.0%)
6	4 (4.8%)
7	1 (1.2%)
8	0 (0.0%)
9	0 (0.0%)
10	2 (2.4%)
>10	6 (7.2%)
Main carer in-hospital		5
Mother	70 (84.3%)
Father	7 (8.4%)
Both parents equally	1 (1.3%)
Non-medical out-of-pocket costs	79 (95.2%)	0
Transport	75 (90.4%)
Food and drinks	71 (85.5%)
Loss of earnings	37 (44.6%)
Childcare	23 (27.7%)
Miscellaneous	31 (37.3%)
No additional out-of-pocket costs	4 (4.8%)
Required additional support	10 (12.0%)	0
Financial hardship due to admission	19 (22.9%)	0

Data presented as median (IQR) or N (%).

PED, paediatric emergency department.

79 participants (95.2%) reported non-medical out-of-pocket costs. Nearly all participants had costs for transport (N=75, 90.4%) or food and drinks (N=71, 85.5%, figure 2). An overview of all costs is reported in table 2.

Figure 2. Proportion of non-medical out-of-pocket costs incurred by participants, stratified by cost category.

Table 2

Non-medical out-of-pocket costs in £ by costs category and by group

	All (N=83)		N (%)
	Total admission	Per day
Transport costs	£40 (£15–£80)	£14.17 (£7.50–£20)	75 (94.0%)
Petrol	£20 (£10–£50)	£5 (£3.33–£10)	65 (78.3%)
Parking	£20 (£10–£50)	£8.75 (£5–£10.54)	61 (73.5%)
Public transport	£12.50 (£5–£33.75)	£5 (£4.25–£12.50)	8 (9.6%)
Other transport	£17.50 (£12.75–£62.50)	£8.50 (£5–£21.75)	4 (4.8%)
Food and drinks costs	£42.50 (£15–£100)	£15 (£10–£20)	71 (85.5%)
Loss of earnings	£325 (£96.25–£712.50)	£81.67 (£37.71–£138.33)	37 (44.6%)
Patient	£55 (£2.50–£130)	£100 (£10–£100)	4 (4.8%)
Parent/carer in hospital	£255 (£96.25–£500)	£95 (£53.57–£126.67)	32 (38.6%)
Parent/carer out of hospital	£275 (£78.75–£525)	£75 (£25–£120)	14 (16.9%)
Other family members	£200 (£5–£1,200)	£27.09 (£7.91–£56.52)	9 (10.8%)
Childcare costs	£87.50 (£41.25–£127.50)	£38.75 (£11.04–£71.88)	23 (27.7%)
Miscellaneous costs	£55 (£30–£107.50)	£6.25 (£3.25–£23.75)	31 (37.3%)
Clothes	£40 (£20–£100)	£5.84 (£1.75–£21.88)	25 (30.1%)
Toiletries	£20 (£10–37.50)	£2.50 (£1.19–£8.13)	28 (33.7%)
Total costs including loss of earnings	£221 (£61.50–£695)	£56.25 (£32.10–£157.25)	–
Total costs excluding loss of earnings	£90 (£40–£286.25)	£24.17 (£16–£47.86)	–

Costs are presented for the total admission and per day of admission. Data are presented as median (IQR).

Travel costs

The vast majority of families incurring costs, travelled by car (N=62, 91.3%). Eight used public transport (11.8%). Costs were median £40 (IQR £15–£80) per admission or £14.17 (IQR £7.50–£20) per day. Participants spent median £5 (IQR £3.33–£10) per day on petrol, and median £8.75 (IQR £5–£10.54) on parking. Public transport costs were median £5 (IQR £4.25–£12.50) per day. Participants perceived these costs as significant:

Because we live so far away we end up buying any little thing need as we can’t just pop home and collect things as and when, and to get someone to bring them is even more costly and fuel is so expensive. (participant 10)

Food and drinks costs

Per admission, families spent median £42.50 (IQR £15–£100) or median £15 (IQR £10–£20) per day. It was the second most common reported cost incurred by 71 participants.

The costs for parents staying with their children in hospital if they have no choice but to eat in the hospital, is very high. The restaurants and shops are expensive and the opening times are not great for parents stuck at a bedside for 23 hours a day. (participant 63)

Participants report reliance on take-away meals:

We depend more on ready meals or take out, due to lots of admissions and my child receiving chemotherapy. It’s hard to manage with 6 kids and no family or friends around us. (participant 16)

Childcare costs

While only 23 participants (27.7%) reported childcare costs, this was perceived as difficult and expensive to organise.

I have two younger children and had to arrange a last-minute babysitter overnight for them as I am a single parent. (participant 43)

This was reflected in the proportionate costs incurred (figure 3), per day median £38.75 (IQR £11.04–£71.88).

Figure 3. Boxplot of costs per day in £ by costs category.

Loss of earnings

Loss of earnings contributed significantly to the total costs families faced (figure 4). 44.6% of participants (N=37) reported costs, which amounted to a median £81.67 (IQR £37.71–£138.33) per day.

Partner [is] self-employed and has lost £300 per day. He’s tried to work as much as he can through this, but our loss is around £600. (participant 36)

Most often income was lost by the parent in-hospital (N=32, 38.6%) and included not just financial losses but also loss of opportunities and clients if services could not be delivered.

My husband is self-employed and cancelled a few jobs to be here [in hospital]. (participant 67)

I am still struggling to get work back to normal again and lost clients. (participant 42)

Figure 4. Boxplots of total admission costs per day for all participants, including and excluding loss of earnings.

Total costs and financial impact

All costs combined, total admission costs were median £221 (IQR £61.50–£695). Per day, this amounted to median £56.25 (IQR £32.10–£157.25) (figure 4).

One participant provided an exemplary breakdown:

27 days hospital so far. £18 per day parking = £486. Petrol = £50 over 3 admissions, as we are from another town. Food/snacks approx. £10 per day (and that’s bringing our own in too as hospitals are expensive) = £270. So around £800! Plus annual leave or pay loss which is around £75 per day. (participant 15)

Ten participants (12%) required additional support, and 19 participants (22.9%) subjectively reported financial hardship directly caused by this hospitalisation.

Our final question was to ask families if there were any unexpected costs that we did not ask about. 14 (16.9%) participants responded and most stated that costs for entertainment, while not a necessity, were important to their child’s well-being:

I’ve spent more money on things like drinks, snacks and entertainment on tablets to keep my child settled. (participant 43)

Discussion

Our results demonstrate hospitalisation for paediatric febrile illness incurs significant costs for families. These costs have a knock-on effect on the wider family network.⁷

Two studies^{4 6} investigating non-medical out-of-pocket costs in general paediatric populations reported median total costs around US$450. This is higher than our reported total costs, but both studies included accommodation costs, had longer length of in-hospital stays, and covered larger geographical areas. Two studies on family costs in intensive care,^{21 22} reported daily costs of €30–57 per day, in line with our data. Little published UK data is available on this topic and results of studies from the USA are not easily extrapolated to the UK setting, due to significant differences in healthcare systems and the funding thereof. While median £56.25 per day may not seem a high cost, this needs to be understood in the context of the UK weekly average household expenditure from the 2021 Census which is £528.80.²³ This means that a week’s admission (£393.75) would cost approximately three-quarters of the entire week average household expenditure.

Most families incurred travel and food costs. Our region has relatively poor public transport for rural communities, mandating car travel and incurring significant petrol and parking costs. 15% of households live in fuel poverty, approximately 1 million citizens, compared with a 12% England average.²⁴ Our centre does not provide meals for resident parents, except breastfeeding mothers. Unable to leave, parents are required to buy food in-hospital or take-aways, limited and expensive options.

Although only incurred by a quarter of participants, childcare accounted for a significant proportion of total costs. In the UK, childcare is expensive and availability limited.²⁵ Organising emergency childcare can be difficult, especially in single-parent households or for children with special needs. Admissions might leave other children in the household unable to attend school or enrichment activities, negatively impacting development.²⁶

Crucially, nearly 50% reported loss of earnings, and one in five reported subjectively that hospitalisation directly caused financial hardship:

Due to current cost of living situation we are currently living pay-to-pay. The extra cost of this visit was something we could have done without as we had to use money for our rent due to it not being an expense we expected. (participant 56)

Lower-income households are financially more vulnerable and disproportionally affected.²⁷ The impact on purchasing power is felt more strongly than for higher-income families. In our region this is even more pressing with average weekly earnings only 65.2%–88.7% of the England average, 21.9% of children live in absolute low-income families (vs 15.6% in England) and 29.4% live in the 20% most deprived deciles.¹³

While the hospital system is not expected to finance out-of-pocket costs incurred by families, there is an ethical obligation to minimise these costs and signpost to supportive services. Social prescribing link workers are employed in the UK to improve links between hospital and social care and ensure families-in-need access all the aid and benefits available to them.²⁸

The 30% of all UK children²⁹ living in poverty experience worse health outcomes than their peers.³⁰ In 11 constituencies in the North of England over 45% of children live in poverty.²⁴ Obesity, asthma, dental caries and bacterial infection in infants^{31 32} are associated with a disadvantaged background and increase the likelihood of unplanned admissions. In England, children from the most deprived areas account for fewer GP or outpatient consultations and more PED visits and unscheduled admissions compared with the least deprived children.^{31 33}

No parent or child should go hungry. Resident parents/carers have little choice in relation to food provision while their child is in hospital. They often rely on more expensive retail outlets which can result in additional financial stress, skipping meals and eating less healthily.²⁴ Due to the cost-of-living crisis, increasing wage gaps and lower subsistence benefits levels, the right of access to accessible and adequate food is under pressure, particularly for the vulnerable, such as the sick (and their carers), the elderly and those in poverty.³⁴ In September 2022, 27.8% of households in the North East of England were experiencing food insecurity, up from 15.2% in April 2022, and compared with the 18.4% England average.²⁴ This is the cornerstone to Sophie’s legacy (https://www.sophieslegacy.co.uk/parentstobefed), a charity supporting resident parents to be fed. An internal quality improvement project of Sophie’s legacy within our hospital showed 96% of parents (N=319) receiving a lunch and hot meal voucher, felt this reduced financial strain:

This has made a huge difference to me and my child, as I’ve been able to stay and help support my child on their most difficult days as I’m not hungry and able to give better support. This has also ensured that I have not had to go into debt to afford to eat whilst my child is staying in hospital and I cannot work.³⁵

Consideration of parents’ circumstances at discharge is vital. We need to be asking if families have sufficient food, fuel and money for travel on discharge, as often children require ongoing care including medication, rehabilitation and follow-up appointments with further costs. One of the most challenging costs is hospital parking. Although unavoidable and capped, this is still significant (£18 a day). A policy supporting admissions could include carpark fee waivers or food and fuel vouchers.

In the era of family-centred care, there is little awareness of non-medical out-of-pocket costs and its impact, despite paediatric services relying on high family involvement.^{2 6} Greater social disadvantage leads to greater health impacts,³² and policies could be tailored with a focus on proportionate universalism, in which services are available to everyone but scaled to the level of need of the individual family.³² It is vital support is available to those at risk of poverty and not only those in poverty. We need to prioritise financial support for acute admissions to reduce health inequalities and disproportionate impact that ‘out-of-pocket’ costs have on families from disadvantaged backgrounds.³²

Strengths and limitations

This study is one of few studies looking at non-medical out-of-pocket costs for families with a hospitalised child in England and provides vital information on the wider implications of hospitalisation on a family unit. Despite the small sample size we were able to get responses from a range of febrile children seen in our PED represented by the wide range of responses in terms of geographical location, admission duration and PED attendance frequency.

As a single-centre study, our results might be less applicable to other UK areas or abroad, given the high level of poverty in the region. Our study may not have covered all potential non-medical out-of-pocket costs, possibly underestimating the true total. Other studies considered accommodation costs during the child’s admission.^{4 6}

Patient-reported costs are known to be useful and valid in assessing incurred costs,³⁶ however, might not represent the true total costs incurred. A societal approach could have been more inclusive as it values time, regardless if the parent is working or not, and would include the broader costs incurred by other caregivers, providing a more comprehensive assessment of productivity costs.

We recognise our survey approach may have introduced selection and reporting bias. Respondents experiencing more negative effects from high expenses, might be more likely complete the survey. Expenses in kind, might also be overestimated or underestimated, particularly as the study did not involve the winter period during which time costs and their burden might be different. We chose to allow a non-mandated open anonymous methodology given the sensitivity of asking about financial hardship.

Conclusion

Hospital admissions for febrile illness, can be expensive and lead to financial hardship for families. There is a role for hospitals to help mitigate this. Supporting policies should be universal but proportionate, as the impact of these costs disproportionally affect lower-income households. Further work on an (inter)national level would allow for comparison across countries, identify differences in policies and differences in the financial costs of hospitalisation for families.

The authors would like to thank the DIAMONDS consortium for their scientific support for this project.

Data availability statement

Data are available upon reasonable request.

Ethics statements

Patient consent for publication

Not applicable.

Ethics approval

This study involves human participants but Ethical approval was exempted by the Newcastle and North Tyneside Research Ethics Committee given the study design, data type collected and participant anonymity. The study was registered with our local Clinical Effectiveness Register (audit number 13572). Participants gave informed consent to participate in the study before taking part.

Footnote

Contributors FJSvdV, EL, HS and ME conceptualised the study. FJSvdV and EL designed the survey. FJSvdV and RW disseminated the surveys. FJSvdV analysed the data. EL and ME provided guidance and expertise to guide data interpretation. FJSvdV and EL wrote the initial manuscript. All authors critically reviewed the manuscript and agreed with the submission of the final manuscript. FJSvdV and EL are guarantors for the work, data, and conduct of this study.

Funding FJSvdV, EL and ME received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement number 848196 as members of the DIAMONDS consortium.

Competing interests None declared.

Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Provenance and peer review Not commissioned; externally peer reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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