Applied Health Economics and Health Policy (2019) 17:15–24

https://doi.org/10.1007/s40258-018-0418-2

PRACTICAL APPLICATION

Standardized Questionnaire for the Measurement, Valuation,

and Estimation of Costs of Informal Care Based on the Opportunity
Cost and Proxy Good Method
Erik Landfeldt1,2 · Niklas Zethraeus3 · Peter Lindgren3

Published online: 13 August 2018

© The Author(s) 2018

Abstract
Costs of informal care account for a significant component of total societal costs for many chronic and disabling illnesses. Yet,
costs associated with the provision of informal care is seldom included in economic evaluations of new health technologies,
increasing the risk of suboptimal decisions on the allocation of resources from the perspective of society. Our objective was
to propose a standardized questionnaire for the measurement, valuation, and estimation of caregiver indirect (productivity)
and informal care costs as separate mutually exclusive subsets of total costs in cost-of-illness studies and as an input to eco-
nomic evaluations from the societal perspective. We developed a questionnaire for data collection and step-by-step analysis
procedures for resource valuation and cost estimation. Data concerning absenteeism from work and time devoted to informal
care were recorded using the recall method. Indirect (productivity) and paid informal care costs were valued and estimated
according to the human-capital approach as the loss of production. Unpaid informal care costs were valued and estimated
as the loss of leisure time quantified using the opportunity cost and proxy good method. The new questionnaire, titled the
Caregiver Indirect and Informal Care Cost Assessment Questionnaire, contains 13 questions regarding caregiver current
and previous work status, productivity, and the provision of informal care (stratified by time devoted to household activities,
personal care, practical support, and emotional support). The proposed questionnaire should be helpful to inform the design,
implementation, and execution of future cost-of-illness studies and economic evaluations from the perspective of society.

Key Points

From the perspective of society, informal caregiving may

be associated with non-trivial costs as a result of absen-
teeism from work and lost leisure time.
For some diseases, omitting costs associated with
informal care may result in suboptimal decisions on the
allocation of resources from the perspective of society.

Electronic supplementary material The online version of this We propose a new standardized questionnaire for the
article (https​://doi.org/10.1007/s4025​8-018-0418-2) contains estimation of caregiver indirect (productivity) and infor-
supplementary material, which is available to authorized users. mal care costs from the perspective of society.
* Erik Landfeldt
[email protected]
1
Institute of Environmental Medicine, Karolinska Institutet, 1 Introduction
Nobels väg 13, 17177 Stockholm, Sweden
2
Icon plc, Stockholm, Sweden Informal caregiving (i.e., care provided by non-pro-
3
Department of Learning, Informatics, Management fessional unpaid individuals, usually family members,
and Ethics, Medical Management Centre, Karolinska other relatives, or close friends, outside of the licensed
Institutet, Stockholm, Sweden

Vol.:(0123456789)
16 E. Landfeldt et al.

or certified formal care sector) constitutes an important 2 Methods

substitute for and complement to formal care. In fact, it
has been estimated that informal care accounts for up to 2.1 Measuring, Valuing, and Estimating Indirect
90% of the in-home long-term care needed by adults in (Productivity) Costs
USA [1]. As a consequence, in addition to adverse health
effects for the individual caregiver, informal caregiving is In the field of health economics, in contrast to other
associated with substantial costs from the perspective of research disciplines, indirect cost has become synonymous
society, as parents, partners, friends, and other relatives with the monetary value of lost production as a result of
reduce their working hours, stop working completely, and/ absenteeism from work or reduced productivity [9, 10].
or devote a significant proportion of their leisure time to In brief, two main methods for the estimation of indirect
provide informal care [2]. Indeed, recently published rec- (productivity) costs exist: (1) the human-capital approach,
ommendations from the Second Panel on Cost-Effective- and (2) the friction cost method. The traditional and most
ness in Health and Medicine underscore the importance commonly applied method for estimating indirect costs
of including implications of informal care in economic in economic evaluations and cost-of-illness studies is the
evaluations conducted from the societal perspective [3]. human-capital approach, in which the loss in production
However, despite its prevalence and magnitude in many is quantified as the number of lost work hours valued at
indications, costs associated with caregiver burden have the cost of employment (i.e., the national mean gross wage
historically seldom been included in economic evalua- plus employer’s costs and social fees), that is, the oppor-
tions, which would be expected to result in suboptimal tunity cost of labor. The human-capital approach is also
policy decisions and inefficient allocation of healthcare the most widely designated method for the estimation of
resources from the perspective of society [4, 5]. Aside indirect costs for use in economic evaluations as per guide-
from differences in the perspective of analysis adopted lines from reimbursement agencies that employ a societal
by national reimbursement agencies, a potential reason perspective in their evaluations [11], such as the Dental
for the absence of these costs in health technology assess- and Pharmaceutical Benefits Agency in Sweden [12].
ments is the lack of robust and relevant data, as estimating According to the friction cost method, production losses
caregiver indirect costs (also known as productivity costs, occur only during the time it takes to replace a worker,
which refer to the loss of production as a result of absen- i.e., the friction period [13]. Although preferred by health
teeism from work from the perspective of society [3]) technology assessment bodies in some countries, e.g., the
and informal care costs (which refer to costs associated Netherlands [11], the friction cost method has been shown
with the provision of care outside of the formal healthcare to be based on implausible assumptions not supported by
sector) requires the collection and analysis of informa- neoclassical economic theory [14]. Moreover, for imple-
tion on many different aspects of work status and leisure mentation, the friction cost method relies on micro-level
time [6]. Moreover, in studies aiming to measure, value, labor market information, which limits its usefulness in
and estimate caregiver indirect and informal care costs as settings in which such data are not readily available. Com-
separate mutually exclusive subsets of total costs, which paring the human-capital approach and the friction cost
is usually necessary for inclusion in economic evalua- method, by design, cost estimates using the former will be
tions, particular care is required to avoid double counting. higher (as they comprise production losses accumulated
Yet, although a wide array of tools has been developed for a longer duration of time). Recently, an alternative for
to measure different elements of the caregiver burden [2, estimating costs of productivity losses for employers based
7, 8], to our knowledge, no instrument has been proposed on detailed information from managers and the derivation
specifically for the collection of data and valuation and of wage multipliers has been proposed in the literature
estimation of caregiver indirect and informal care costs. [15]. However, analogously to the friction cost method, the
In addition, the lack of a standardized tool to assess costs applicability of this method, despite generating accurate
associated with informal care also limits the possibilities estimates, would be expected to be limited by non-trivial
to conduct meaningful comparisons of estimates across micro-level data requirements.
studies. The objective of this article is to present a ques-
tionnaire for the measurement, valuation, and estimation
of caregiver indirect (productivity) and informal care 2.2 Measuring, Valuing, and Estimating Informal
costs as separate mutually exclusive subsets of total costs Care Costs
in cost-of-illness studies and as an input to economic
evaluations from the societal perspective. To estimate informal care costs, which for the purpose of
the present study refer specifically to the time the caregiver
Questionnaire for Estimating Informal Care Costs 17

spends providing informal care (not e.g., out-of-pocket quality of life. In turn, a key disadvantage with the opportu-
expenses or other costs associated with the formal or infor- nity cost method concerns valuation and the need to identify
mal care of the patient carried out by the caregiver, or the the opportunity cost of leisure time [16].
monetary value of impaired health-related quality of life),
it is necessary to record the time devoted to informal care 2.3 Standardized Questionnaire
activities and tasks (e.g., helping with dressing, preparing for the Measurement, Valuation, and Estimation
food and feeding, accompanying to doctors’ appointments, of Caregiver Indirect (Productivity)
and providing emotional support). Two main methods for and Informal Care Costs
the measurement of such data are described in the lit-
erature: (1) the diary method, and (2) the recall method As noted in Sect. 1, estimating caregiver indirect (productiv-
[2]. In the former, the caregiver is asked to register all ity) and informal care costs as separate subsets of total costs
the time spent on caregiving during a specific timeframe from the perspective of society can be challenging as the
(e.g., a day), usually stratified by activity/task. In the latter analysis comprises lost work time (including lost produc-
method, the caregiver is asked to specify the time spent on tivity while working), as well as paid and unpaid informal
informal care in general and/or for specific care activities care. To that end, in this article, we propose a new stand-
and tasks during a specific timeframe (e.g., a day or week). ardized questionnaire that explicitly measures, values, and
In practice, most cost research utilizes the recall method, estimates these different cost components separately. The
possibly as it is considered too burdensome for caregivers questionnaire is designed to be generic and thus applica-
to keep a diary of their tasks, but also as such detailed data ble irrespective of the disease or condition of the patient or
in our experience is seldom needed for the estimation of geographical setting. In addition, Stata, SAS, and R analysis
costs, in particular when considering the granularity of the procedures for the step-by-step valuation and estimation of
other resource data typically collected in cost-of-illness indirect and informal care costs based on the data recorded
studies. by the questionnaire are provided as Electronic Supplemen-
Once measured, the time spent providing informal care tary Material (ESM).
can be valued (i.e., converted to monetary units) in a number The specification of the new questionnaire was based on:
of ways. The two most commonly applied methods include (1) data requirements for the measurement, valuation, and
the proxy good method (also known as the replacement estimation of caregiver indirect (productivity) and informal
cost approach) [16] and the opportunity cost method [17]. care costs according to the human-capital approach, the
In the former, the time recorded for the different activities proxy good method, and the opportunity cost method; (2)
and tasks are valued at a shadow price of a market substi- our previous experience of developing case report forms for
tute (e.g., a housekeeper for housekeeping services and a cost-of-illness research across different indications and ther-
nurse for nursing services). In other words, using the proxy apeutic areas; and (3) a targeted literature review of previous
good method, informal caregiving activities and tasks are frameworks and tools for estimating caregiver indirect and
considered and valued as work, as opposed to lost leisure informal care costs (details provided as ESM).
time. In contrast, using the opportunity cost method, infor- The questionnaire was designed to measure, value, and
mal care time is instead valued at the opportunity cost from estimate caregiver indirect (productivity) costs according
the perspective of the caregiver. This is usually based on the to the human-capital approach. To that end, we devised
individual’s wage, but can also include estimates derived questions to record data on all relevant aspects of previ-
using other techniques (e.g., conjoint analysis, contingent ous and current work status (including employment status,
valuation, or estimates of the value of travel time savings, work hours, absenteeism, and productivity while working)
which represent the monetary value of reduced travel time). to measure the total loss of work hours. To estimate informal
Although a full review of the strengths and weaknesses care costs, we formulated questions to record the number of
of the proxy good and opportunity cost methods is outside hours of leisure time (i.e., non-working hours) devoted to
the scope of this article, it is worth mentioning that, from informal care using the recall method.
a theoretical point of view, the latter method is preferred To allow a more precise valuation of informal care based
because resources (and time inputs) should be valued at their on the proxy good method, we included four different cat-
opportunity costs to society [17]. Moreover, compared with egories of informal care activities and tasks, of which three
the opportunity cost method, an advantage of the proxy good were modified versions of questions included in the iMTA
method is that different caregiver tasks can be valued sepa- Valuation of Informal Care Questionnaire [18] (a previously
rately, resulting in potentially more precise cost estimates. A developed measure of different aspects of informal care): (1)
drawback is that the method fails to incorporate differences household activities, (2) personal care, (3) practical support,
in quality and efficiency between formal and informal care, and (4) emotional support. As specified in the iMTA Valu-
which may also have an impact on patient health-related ation of Informal Care Questionnaire, in an attempt to only
18 E. Landfeldt et al.

record the additional time spent on household activities and 3 Results

similar tasks of caregiving associated with the disease or con-
dition of the patient, the questions relating to the provision 3.1 Caregiver Indirect and Informal Care Cost
of informal care included an explanation that only activities Assessment Questionnaire
and tasks that the caregiver would not have had to perform if
the patient was in good health, or if she/he could have done The new questionnaire, titled the Caregiver Indirect and Infor-
them, should be considered. We chose to not measure time mal Care Cost Assessment Questionnaire (CIIQ), is shown
devoted to non-caregiving and caregiving household activi- in Fig. 1. It contains 13 questions concerning caregiver work
ties and tasks separately, as previous research has shown that status and the provision of paid and unpaid informal care.
such a distinction may result in an underestimation of the time Tables 1 and 2 present the different steps involved in the esti-
devoted to informal caregiving [19]. mation of caregiver indirect (productivity) and informal care
In addition, the questionnaire was formulated to also record costs of illness based on the data collected using the CIIQ. The
data concerning paid informal care, that is, the time (if any) described analysis procedure for indirect costs encompasses a
that the caregiver is financially compensated (e.g., by the state) total of six steps, differentiating between caregivers who are
to care for the patient. Adjustment for joint production (i.e., employed full-time, employed part-time, and unemployed. The
when an individual performs several activities at the same time procedures for estimating informal care costs include three
or during a specific period of time) was not considered as there steps, differentiating between paid and unpaid informal care.
is evidence that respondents account for this when reporting Stata, SAS, and R analysis procedures for the step-by-step
time using the recall method [20]. estimation of indirect and informal care costs are provided
In the standardized questionnaire and the accompanied as ESM.
analysis procedures, two different approaches were imple-
mented depending on the choice of valuation of informal care. 3.2 Example Applications
Specifically, using the proxy good method, recorded hours of
informal care were accounted for in full as an informal care To showcase the instrument, we now present example calcu-
cost, whereas only the cost associated with lost work hours lations for three fictitious US caregivers with different work
(for caregivers who reduced their working hours or stopped status and involvement in the provision of paid and unpaid
working completely) that were not substituted by informal care informal care. In these examples, to obtain annual estimates,
were accounted for, and subsequently valued, as an indirect it is assumed that the mean number of working weeks per year
(productivity) cost. This is because informal care, using the in USA is 48 [21]. For the calculation of indirect (productivity)
proxy good method, is regarded as work from the perspective costs, we assumed that that the cost of employment (i.e., the
of society. Put differently, using this method, the estimated cost gross wage plus employer’s costs and social fees) is US$35 per
associated with informal care is subtracted from the estimated hour [22]. For the valuation of informal care using the oppor-
indirect cost. tunity cost method, we assumed a gross wage of US$20 for
In the second approach, based on the opportunity cost the opportunity cost of work time, and 35% of the gross wage
method, informal care cost was estimated analogously, (0.35 × US$20 = US$7) for the opportunity cost of leisure time,
whereas indirect (productivity) cost was accounted for in the latter in line with recently updated estimates of the value
full. This is because informal care, using the opportunity cost of travel time savings [23].
method, is valued and estimated in terms of lost leisure time Using the proxy good method, we assumed for simplicity
from the perspective of the caregiver, and thus not regarded that the market substitute cost of all informal care activities
as work. It should be noted that there is evidence from previ- and tasks (i.e., household activities, personal care, practical
ous research that caregivers may overestimate the time they support, and emotional support) was US$50 per hour. Addi-
devote to informal care, and for this reason, some studies have tionally, in our example analyses, we imposed a minimum
imposed a constraint to allow the caregiver time for basic amount of leisure time of 6 h per day to allow the caregiver
needs (e.g., eating, sleeping, and toileting) [2]. We included time for basic needs. Accordingly, the maximum amount of
this option in our analysis procedures. Last, using both meth- time per week available for work, informal care, and leisure
ods, paid informal care was measured as work hours, valued was (24 − 6) × 7 = 126 h. However, it is important to note that
at the cost of employment. all these assumptions can be easily modified by the researcher
using the CIIQ.
Questionnaire for Estimating Informal Care Costs 19

Fig. 1  Caregiver Indirect and

Informal Care Cost Assessment The Caregiver Indirect and Informal Care Cost Assessment Quesonnaire
Questionnaire (CIIQ) We will now ask you quesons regarding your current work status and the me that you spend
caring for your child, partner, relave, or friend. Please note that we from now on will refer to
the person you care for as “relave”, although your relaonship may be different.

WORK STATUS

1 Are you currently employed or self-employed (working for pay)?

Yes
No (skip to queson 8)

2 How many hours per week do you work (e.g. according to your employment contract)?
hours per week

3 Are you currently working full-me?

Yes (skip to queson 6)
No

4 Did you reduce your working hours due to your relave’s disease/condion
(e.g. to care for him/her)?
Yes
No (skip to queson 6)

5 How many hours per week did you work before reducing your working hours?
hours per week

6 During the last week, how many hours did you miss from work due to your relave’s
disease/condion?
Include hours missed when you came in late or le work early because you e.g. accompanied
your relave to doctor appointments, visited hospitals or clinics, or helped your relave
dressing, grooming, eang, or take medicaons.
hours per week

7 During the last week, how much did your relave’s disease/condion affect your
producvity while you were working?
If you were able to work as usual, choose a low number. If you were not able to work as usual
(e.g. accomplished less than usual, could not concentrate or perform certain tasks as carefully
as usual), choose a high number.

Could work Could not

as usual 0 1 2 3 4 5 6 7 8 9 10 work at all

Go to queson 9

8 If not working: Did you stop working because of your relave’s disease/condion?
Yes How many hours per week did you used to work? hours
No

9 Are you compensated in any way for the me that you care for your relave?
This include payment from e.g. the government or an insurance company to care for your relave.
Yes How many hours per week are you paid to care for your relave? hours
No

TURN PAGE
The Caregiver Indirect and Informal Care Cost Assessment Quesonnaire
Copyright © Erik Landfeldt 2018
20 E. Landfeldt et al.

Fig. 1  (continued)
The Caregiver Indirect and Informal Care Cost Assessment Ques onnaire

INFORMAL CAREGIVING

10 During the last week, how much me did you spend on household ac vi es and tasks
that you would not have had to perform if your rela ve was in good health, or if she/he
could have done them independently?
For example preparing food, cleaning, washing, ironing, sewing, shopping, and gardening.

hours per week

11 During the last week, how much me did you spend helping your rela ve with her/his
personal care?
For example dressing/undressing, washing/showering/bathing, hair care, shaving and
grooming, and going to the toilet.

hours per week

12 During the last week, how much me did you spend providing prac cal support to your
rela ve that would not have had to be performed if she/he were in good health,
or if she/he could have done it independently?
For example eang and drinking, moving inside or outside the house (including assistance
with walking or using a wheelchair), vising family or friends, accompany to healthcare
visits (e.g. doctor appointments), filling prescripons at the pharmacy, help taking
medicaons, and taking care of financial maers (e.g. paying the bills or managing
healthcare insurance).
hours per week

13 During the last week, how much me did you spend on providing emo onal support to
your rela ve that would not have had to be provided if she/he were in good health?
For example help to cope with pain, disability, and discomfort, anxiety, and worry.

hours per week

The Caregiver Indirect and Informal Care Cost Assessment Quesonnaire

Copyright © Erik Landfeldt 2018
Questionnaire for Estimating Informal Care Costs 21

Table 1  Steps to estimate caregiver indirect (productivity) costs of illness using the Caregiver Indirect and Informal Care Cost Assessment
Questionnaire

Step 1 Calculate total work hours including paid informal care

The first step to estimate caregiver indirect (productivity) costs is to calculate the total number of work hours per week, including hours
that the caregivers are paid to care for their relative, using data recorded in Question 2 and Question 9
Step 2 Calculate the loss of work hours while working
The second step is to estimate the loss of work hours while working (for caregivers who are employed). For this calculation, the
recorded loss in productivity from Question 7 is transformed to a proportion representing percent work impairment/loss. This estimate
is then multiplied by the number of work hours per week (recorded in Question 2) adjusted for the number of hours missed from work
(recorded in Question 6). The calculated loss is then added to the number of hours missed from work (recorded in Question 6), which
represents the total loss of work hours for caregivers employed full-time
Step 3 Calculate the loss of work hours for caregivers employed part-time
The third step is to calculate the loss of work hours for caregivers who are employed part-time (i.e., No on Question 3). This should only
comprise hours for caregivers who state that they reduced their working hours because of the disease/condition of the relative (i.e., Yes
on Question 4). To calculate the loss of work hours, total work hours (calculated in Step 1) are subtracted from previous work hours
(recorded in Question 5). This loss is then added to the number of hours missed while working (calculated in Step 2)
Step 4 Calculate the loss of work hours for caregivers not employed
The fourth step is to estimate the loss of work hours for caregivers who are unemployed (i.e., No on Question 1). This calculation should
only comprise caregivers who state that they stopped working because of the disease/condition of the relative (i.e., Yes on Question
8). To calculate the loss of work hours, the number of hours of paid informal care recorded in Question 9 is subtracted from previous
work hours recorded in Question 8
Step 5 Extrapolation
The fifth step is to extrapolate the weekly data to annual estimates using external data on the country-specific mean number of work
weeks per year
Step 6 Valuation and estimation
The sixth and final step is to multiply the estimated total annual loss of work hours with the cost of employment. Using the proxy good
method, the value of informal care (calculated in Table 2) must be subtracted from the total value of lost work hours (excluding costs
associated with loss of work hours owing to lost productivity while working calculated in Step 2)

Table 2  Steps to estimate caregiver informal care cost of illness using the Caregiver Indirect and Informal Care Cost Assessment Questionnaire

Step 1 Calculate total number of hours of paid informal care

The first step to estimate caregiver informal care cost is to calculate the number of hours of paid informal care per week. These data are
recorded in Question 9. To obtain the annual number of hours of paid informal care, the weekly data are multiplied by 52, assuming
that the care is provided throughout the year
Step 2 Calculate total number of hours of unpaid informal care
The second step is to calculate the total number of hours of unpaid informal care per week. These data are recorded in Question 10
through Question 13. To obtain the annual number of hours of unpaid informal care, the weekly data are multiplied by 52, assuming
that the informal care is provided throughout the year. The calculated number of hours of unpaid informal care may be adjusted to
allow for a minimum time for basic needs (e.g., eating, sleeping, and toileting) of 6 h per day
Step 3 Valuation and estimation
Opportunity cost method
The third and last step to calculate informal care cost is to multiply the calculated hours of unpaid informal care by the chosen opportu-
nity cost of leisure time (e.g., 35% of the national mean gross wage according to the value of travel time savings [22]). Paid informal
care (calculated in Step 1) is valued at the cost of employment
Proxy good method
The third and last step to calculate informal care cost is to multiply the calculated hours of unpaid informal care by the chosen market
substitute costs. Paid informal care (calculated in Step 1) is valued at the cost of employment

3.2.1 Example Caregiver A: Alice could perform her tasks as usual while at work). In addi-
tion, she spends on average 12 h per week after work to
Alice works 40 h full-time, but is also paid 10 h per week to care for her son. According to these data, Alice’s total loss
care for her son with a musculoskeletal condition. During of work hours during the last week would be 2. Assum-
the last week, Alice estimates that she lost 2 h while work- ing that she works 48 weeks per year, her total annual loss
ing (while attending a doctor appointment with her son), would be 2 × 48 = 96 h, which implies a total annual indi-
but rated her productivity loss at 0 out of 10 (i.e., that she rect cost of 96 × US$35 = US$3360. Moreover, her total
22 E. Landfeldt et al.

annual number of hours of paid informal care would be work hours during the last week would be 40 – 20 = 20,
10 × 52 = 520, valued at 520 × US$35 = US$18,200. Using which is equal to 20 × 48 = 960 h per year, which implies
the opportunity cost method, Alice’s total annual number a total annual indirect cost of 960 × US$35 = US$33,600.
of hours of unpaid informal care would be 12 × 52 = 624, In addition, she missed 2 work hours as a result of leaving
valued at 624 × US$20 × 0.35 = US$4368. Alternatively, work early, which is equal to 2 × 48 = 96 h per year, valued
using the proxy good method, Alice’s total annual number of at 96 × US$35 = US$3360, and lost (20 − 2) × 0.50 = 9 h
hours of unpaid informal care would also be 624, valued at per week because of reduced productivity while working
624 × US$50 = US$31,200, and her total annual indirect cost (recorded at 50%), which equals 9 × 48 = 432 h per year, val-
would be US$0 (because US$3360 − US$31,200 < US$0) ued at 432 × US$35 = US$15,120. Consequently, Charlotte’s
because she substitutes her lost work hours with informal total annual indirect cost would be US$33,600 + US$3360
care. + US$15,120 = US$52,080.
Thus, the total cost of Alice’s informal care was estimated Moreover, using the opportunity cost method, her total
at US$18,200 + US$4368 = US$22,568 and US$18,200 + U annual number of hours of unpaid informal care would be
S$31,200 = US$49,400 using the opportunity cost and proxy 15 × 52 = 780, valued at 780 × US$20 × 0.35 = US$5460.
good method, respectively. Last, we note that her total num- Alternatively, using the proxy good method, Charlotte’s total
ber of work, paid informal, and unpaid informal care hours annual number of hours of unpaid informal care would also
do not exceed 126 h per week. be 780, valued at 780 × US$50 = US$39,000, and her total
annual indirect cost would be US$0 (because US$33,600 +
3.2.2 Example Caregiver B: Brian $3360 − US$39,000 < US$0).
In both cases, Charlotte’s paid informal care cost would
Brian used to work full-time 35 h per week but stopped be US$0 (as she was not paid to provide informal care).
working completely when his wife was diagnosed with can- Thus, the total cost of Charlotte’s informal care was esti-
cer. Instead, he spends on average 63 h per week caring for mated at US$5460 and US$39,000 using the opportunity
his wife at home (but is not paid to do so). Accordingly, cost and proxy good method, respectively, and we note that
Brian’s total loss of work hours during the last week would her total number of work, paid informal, and unpaid infor-
be 35, equal to 35 × 48 = 1680 h per year, which implies a mal care hours do not exceed 126 h per week.
total annual indirect cost of 1680 × US$35 = US$58,800.
Moreover, using the opportunity cost method, his total
annual number of hours of unpaid informal care would be 4 Discussion
63 × 52 = 3276, valued at 3276 × US$20 × 0.35 = US$22,
932. Alternatively, using the proxy good method, Brian’s The aim of this article was to present a new standardized
total annual number of hours of unpaid informal care would questionnaire for the measurement, valuation, and estimation
also be 3276, valued at 3276 × US$50 = US$163,800, and of caregiver indirect (productivity) and informal care costs
his total annual indirect cost would be US$0 (because as separate mutually exclusive subsets of total costs in cost-
US$58,800 − US$163,800 < US$0). of-illness studies and as an input to economic evaluations
In both cases, Brian’s paid informal care cost would be from the societal perspective. Given the amount of informa-
US$0 (as he was not paid to provide informal care). Thus, tion typically captured in cost-of-illness research, including
the total cost of Brian’s informal care was estimated at data on healthcare resource use (e.g., hospital admissions,
US$22,932 and US$163,800 using the opportunity cost and visits to physicians and other healthcare professionals, medi-
proxy good method, respectively, and we note that his total cal tests and assessments, medications, and emergency and
number of work, paid informal, and unpaid informal care respite care), non-medical resources (e.g., non-medical aids,
hours do not exceed 126 h per week. devices, and investments, and transportation services), and
patient work status, we sought to develop a short tool record-
3.2.3 Example Caregiver C: Charlotte ing data of sufficient granularity while minimizing the bur-
den on the respondents.
Charlotte reduced her working hours from 40 h to 20 h per The proposed questionnaire, titled the CIIQ, was designed
week to help care for her sister with breast cancer. During to measure all data needed to value and estimate these cost
the last week, Charlotte missed 2 work hours as a result components, irrespective of the disease or condition of the
of leaving work early, and rated her productivity loss at patient or geographical setting. Despite being relatively
5 out of 10 because she worried a lot about the progno- brief, our example calculations show that the framework
sis of her sister and was therefore not able to pursue her successfully accommodates analysis of caregivers with
work tasks as usual. She also reports spending 15 h per day widely different work statuses and caregiving roles, includ-
caring for her sister. Accordingly, Charlotte’s total loss of ing varied levels of absenteeism from work, lost productivity
Questionnaire for Estimating Informal Care Costs 23

while working, and unpaid and paid informal care. Yet, with distributed across the year for any given patient. Although
respect to the CIIQ, there are several important assumptions this would be expected to be a reasonable simplification for
and limitations that warrant further discussion. chronic health states, for acute symptoms such as stroke
First, when extrapolating weekly or daily data to yearly or short-term injuries, this assumption could result in an
estimates, the proposed questionnaire relies on external under- or overestimation of the informal caregiving burden
information on the mean number of weeks working per (depending on the timing of the informal care).
year (that is, a full calendar year minus the country-specific Fifth, and last, it is important to emphasize that more
total number of weeks or days of annual leave). We chose research is needed to understand the psychometric properties
this approach as we found it to be unfeasible to measure of the CIIQ as applied in populations of caregivers, includ-
these data in the CIIQ (e.g., by asking caregivers how many ing test–retest reliability. Validation studies, in which the
weeks per year they work, or their total number of weeks information recorded in the CIIQ is cross-checked with his-
of annual leave per year, which includes paid vacation days torical data on absenteeism as collated in population-based
and public holidays). Although using external data may bias administrative databases, would be helpful to further assess
the cost estimates derived from the CIIQ, as the sample size the robustness of the CIIQ.
increases, the mean number of weeks of annual leave in a
given cohort of caregivers would be expected to converge to
the mean for the total national population, as caregivers are
not limited to some subgroups (as defined by e.g., indica- 5 Conclusions
tion or socio-economic status) of the general population. In
fact, in USA, an estimated 65.7 million individuals, roughly We propose a new standardized questionnaire, the CIIQ,
20% of the total population, were involved in the provision for the measurement, valuation, and estimation of caregiver
of informal care to children or adult patients in 2009 [1]. indirect (productivity) and informal care costs as separate
Second, it is worth noting that our proposed questionnaire mutually exclusive subsets of total costs in cost-of-illness
only accommodates the estimation of costs associated with studies and as an input to economic evaluations from the
one caregiver (e.g., a single parent or partner). However, societal perspective. The CIIQ should be helpful to inform
in many cases, in particular for childhood diseases, several the design, implementation, and execution of future cost
individuals may contribute to the provision of informal care. studies encompassing resources beyond those directly attrib-
Thus, the CIIQ may be complemented with additional ques- utable to the medical care of the patient, and facilitate eco-
tions regarding e.g., the proportion of informal care provided nomic evaluations from the perspective of society.
by the participating caregiver to allow for an estimation of
Acknowledgements The authors gracefully acknowledge Dr. Matthias
total indirect and informal care costs. Hunger, Icon plc, Munich, Germany, for implementing the analysis
Third, an important statistical consideration of the pre- procedures in SAS and R.
sent study concerns information bias, a systematic error that
arises from measurement error. The two main sources of Author Contributions Erik Landfeldt originated the idea for the study.
Erik Landfeldt led the development of the questionnaire with input
information bias in our work are recall bias and incorrect
from Peter Lindgren and Niklas Zethraeus. Erik Landfeldt developed
reporting. Specifically, caregivers may find it difficult to the analysis procedures and drafted the manuscript. Peter Lindgren
precisely remember the time devoted to informal care or the and Niklas Zethraeus revised the manuscript for important intellectual
number of hours of lost work time. In addition, caregivers content. All authors approved the decision to submit for publication.
Erik Landfeldt is the overall guarantor of the article.
may not be able to fully differentiate between the time spent
on normal and informal care tasks [2]. We tried to alleviate
the impact of this limitation by specifying recall periods in Compliance with Ethical Standards
accordance with conventional specifications/descriptions of
Funding No sources of funding were received for the preparation of
work hours in general media and employment agreements this article.
(e.g., number of work hours employed per week, as opposed
to per month or year). For hours of unpaid informal care, Conflict of interest Erik Landfeldt, Peter Lindgren, and Niklas Ze-
we chose to measure the daily number of hours to minimize thraeus have no conflicts of interest directly relevant to the contents
recall bias. Yet, to further limit incorrect reporting, depend- of this article.
ing on the target indication and geographical setting, we
Open Access This article is distributed under the terms of the Crea-
suggest including help texts, as well as logical tests and skip
tive Commons Attribution-NonCommercial 4.0 International License
patterns if administered online, to ensure that the recorded (http://creativecommons.org/licenses/by-nc/4.0/), which permits any
data are accurate and complete. noncommercial use, distribution, and reproduction in any medium,
Fourth, for extrapolation, the CIIQ analysis procedures provided you give appropriate credit to the original author(s) and the
assumes that the provision of informal care is uniformly
24 E. Landfeldt et al.

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