Qual Life Res DOI 10.1007/s11136-015-1028-1

Caring for relatives with lung cancer in Europe: an evaluation of caregivers’ experience Jacek Jassem1 • John R. Penrod2 • Amir Goren3 • Isabelle Gilloteau2

Accepted: 22 May 2015 Ó Springer International Publishing Switzerland 2015

Abstract Purpose Informal caregiving for cancer patients is associated with substantial costs and negative health impact. This study investigated the health, humanistic and economic consequences of caring for lung cancer patients in five European Union (EU) countries. Methods The study included respondents to the 2010/2011 EU National Health and Wellness Survey from France, Germany, Italy, Spain and the United Kingdom who self-reported being caregivers of a relative with lung cancer (n = 107) or non-caregivers (n = 103,868). Bivariate and multivariable analyses tested the association of caregiving with stress-related comorbidities; health-related quality of life (HRQoL), using the Short Form-12; healthcare resource use; and work productivity/activity impairment, using the Work Productivity and Activity Impairment (WPAI) questionnaire. Costs were based on absenteeism and presenteeism rates. Results Caregivers versus non-caregivers had significantly higher odds of depression, insomnia, headache and gastrointestinal symptoms, and worse HRQoL. Caregivers reported significantly higher rates of presenteeism-related, overall work and activity impairment; higher odds of impairment across WPAI measures; and higher annual

& Amir Goren [email protected] 1

Department of Oncology and Radiotherapy, Medical University of Gdan´sk, Gdan´sk, Poland

2

Global Health Economics and Outcomes, Bristol-Myers Squibb, Princeton, NJ, USA

3

Health Outcomes Practice, Health Economics and Outcomes Research, Kantar Health, 11 Madison Ave, Fl 12, New York, NY 10010, USA

indirect costs with presenteeism and overall work impairment. Conclusions Caregiving for lung cancer patients is associated with significant health/work impairments and costs, highlighting a need for increased, personalized caregiver support. Keywords Caregivers  Health-related quality of life  Lung cancer  Work Productivity and Activity Impairment

Introduction Lung cancer is the largest single cause of deaths from cancer worldwide, leading to more than 1.5 million deaths in 2012—greater than any other cancer [1]. Patients with lung cancer are frequently diagnosed at an advanced stage and have then an average survival time of only 8 months [2]. Five-year survival rates across all stages among patients with lung cancer remain low (approximately 8–16 %) [3], and in the majority of patients, treatment is only palliative [4]. Furthermore, patients may experience treatment-related side effects [5]. Lung cancer has a considerable social and economic burden [6]. In a recent study, lung cancer was associated with annual total costs of €18.8 billion across the European Union (EU), the largest economic burden of any cancer [7]. Lung cancer was also associated with the highest productivity losses attributable to mortality (€9.92 billion; 23 % of the total productivity losses from all cancers) and the highest costs of informal care (€3.82 billion; 16 % of the total cost of informal care for all cancers). The significant burden shouldered by caregivers of patients with lung cancer can also include increased social isolation, psychological impairment and poorer quality of life [6, 8, 9].

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Caregivers’ experiences and roles, which vary by disease severity, may include emotional support as well as managing symptoms (e.g., pain, nausea and fatigue) [10, 11]. Existing literature on caregiver burden in lung cancer is scarce, particularly in Europe. Significant and varied impairments, including comorbidities, reduced productivity, diminished health-related quality of life (HRQoL) and increased resource use, have been associated with caregiving for patients with cancer (of any type) across the five largest EU countries [12]. The few available Europeanbased studies suggested that caregivers of patients with lung cancer provided a high degree of support [13], incurred financial losses [13] and experienced physical and psychological problems, including exhaustion, depression and impaired emotional well-being [14, 15]. These findings mirror the experience of caregivers in the United States [8– 11, 16, 17], although data are also limited in the United States. The objective of the current study was to understand the health, humanistic and economic consequences of caring for patients with lung cancer within a broad European population and across several outcome measures, including stress-related comorbidities, HRQoL, use of healthcare resources and impaired work productivity or activity and associated costs.

Materials and methods Study sample Data were collected from the 2010/2011 EU National Health and Wellness Survey (NHWS), an annual, crosssectional, Internet-based survey of self-reported healthcare attitudes and behaviors among adults (C18 years old). Samples were representative of adult populations in France, Germany, Italy, Spain and the United Kingdom, using stratified random sampling with age and gender according to the International Database of the US Census. NHWS data were available for 2010 and 2011; only 2011 data were analyzed for respondents who completed both 2010 and 2011 surveys. Data were compared between respondents who reported being caregivers of an adult relative with lung cancer (‘caregivers’) and those who reported not being caregivers of a relative with any condition (‘non-caregivers’). Cancer caregivers in the 2010 EU NHWS were re-contacted via a brief survey to identify specific cancers affecting their relatives, as this information was only available in 2011 NHWS. That is, data identifying caregivers as those caring for patients with lung cancer were collected via a 2011 re-contact survey, but only for

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2010 caregivers. All other measures and health outcomes results were based on current or retrospective recall, selfreported data collected during the 2010 or 2011 NHWS. All respondents provided informed consent to participate in the NHWS and re-contact surveys, which were approved by Essex Institutional Review Board (Lebanon, NJ, USA). Measures and survey instruments Sociodemographic and health characteristics included age, country, sex, education, household income category, marital status, employment, body mass index (BMI) category, alcohol, exercise, smoking and Charlson comorbidity index (CCI) category [18]. The CCI is a summary score weighting the presence of several comorbidities (e.g., myocardial infarction, diabetes mellitus and cancer), with higher scores indicating increased risk of mortality. Selection of stress-related comorbidities for the self-reported survey was based on the published literature and included depression, anxiety, insomnia, headache, migraine and gastrointestinal symptoms [19]. HRQoL was assessed using the Short Form-12 (SF12v2), a validated health survey consisting of 12 items from the Medical Outcomes Study 36-Item Short-Form Health Survey; the SF-12v2 includes mental and physical component summary scores (MCS and PCS, respectively), subcomponents of mental and physical functioning (bodily pain, general health, mental health, physical functioning, role emotional, role physical, social functioning and vitality) and SF-6D health state utilities, all derived from the SF-12v2 items [20]. Differences in PCS and MCS scores exceeding 3 points were considered minimally important differences (MIDs) [21], as were SF-6D health utility differences exceeding 0.03 points [21, 22]. MIDs represent the smallest differences on a measure associated with meaningful differences on clinical and other relevant aspects of a respondent’s health status, considered in terms of importance to the respondent or society. Healthcare resource use was assessed by the self-reported number of hospitalizations, emergency room visits and visits to healthcare providers during the past 6 months for the respondents’ own health, regardless of cause. The impact of caregiving on employment was assessed by the Work Productivity and Activity Impairment (WPAI) questionnaire, a validated instrument to measure work/activity impairments covering absenteeism (percentage work productivity lost because of missed work days), presenteeismrelated impairment (percentage impairment while working), overall work impairment (percentage impairment combining absenteeism and presenteeism) and activity impairment related to respondents’ general health (percentage impairment during daily activities) during the past week [23].

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Work productivity cost analysis

Results

Indirect costs related to loss of work productivity were estimated for each respondent using the human capital method (HCM), which assesses the degree to which caregiving for a patient with lung cancer is associated with impairment to an individual’s productivity, as used in other cancer cost-of-illness studies [24–26]. Median hourly wages (for full-time workers) were obtained for each EU country from Eurostat 2006 personal income figures [27], with income inflated to 2010 based on Eurostat (France, Germany, Italy and Spain) or UK Office of National Statistics figures. Hourly wages were estimated by dividing annual wages by the typical number of weeks worked per year and hours worked per week, based on data from the European Foundation for the Improvement of Living and Working Conditions [28]. Monetary costs were based on absenteeism and presenteeism rates, as measured by the WPAI scale, for all employed or self-employed respondents. To estimate weekly costs, the total number of hours missed in the last week because of absenteeism- and presenteeism-related impairment were multiplied by median hourly wages; these figures were then multiplied by the average number of working weeks per year to obtain annual estimates.

Caregiver and control samples

Statistical analysis Respondents’ characteristics were analyzed using descriptive statistics. The potential impact of being a caregiver for a patient with lung cancer on HRQoL, comorbidities, work/ activity impairment and healthcare resource use was explored using bivariate and multivariable analyses. Bivariate analyses tested for unadjusted differences in characteristics and outcomes, using two-sided tests of equality for column means (continuous variables) or proportions (categorical variables). Work/activity impairment was investigated not only using the continuous WPAI measures, but also by examining any impairment versus no impairment on the different measures. Health outcome differences between caregivers and noncaregivers were then examined with multivariable regression models. Based on the results of the bivariate analyses, multivariable regression models adjusted for selected demographic and health characteristic covariates (age, sex, college degree, income, marital status, employment, BMI, alcohol, smoking and CCI). Multivariable regression models provided adjusted means (except from logistic regressions), unstandardized betas (b) for normal linear regressions (representing the change in an outcome variable such as MCS and PCS associated with a 1-unit change in a covariate), rate ratios for negative binomial regressions and odds ratios (ORs) for logistic regressions. For all analyses, P \ 0.05 was considered statistically significant.

The total sample size of respondents from the 2010/2011 NHWS was 114,962, including 29,972 individuals from France (26.1 %), 29,895 from Germany (26.0 %), 30,065 from the United Kingdom (26.2 %), 15,030 from Italy (13.1 %) and 10,000 from Spain (8.7 %). Within this total sample, 107 caregivers of patients with lung cancer and 103,868 non-caregivers (used as a control group) were identified and included in this study. Sociodemographics and health characteristics Sociodemographic and health characteristics were generally similar between caregivers and non-caregivers (Table 1). The mean age of caregivers and non-caregivers was similar (44.1 and 46.3 years, respectively, although non-caregivers were more likely to be in the 50–64 year age group), and the majority in each case were employed (55.1 and 57.4 %, respectively). Our sample contained more caregivers of patients with lung cancer from Italy (23.4 % of the caregiver sample), Germany (22.4 %) and Spain (19.6 %) than from the United Kingdom (17.8 %) and France (16.8 %). Relative to the percentages of noncaregivers by country, Spanish caregivers composed a significantly larger percentage of the caregiver population, whereas French, UK and Italian caregivers composed a smaller percentage. For the other sociodemographic variables, no significant differences between informal caregivers and non-caregivers were observed. Health outcomes differences In bivariate analyses, a significantly higher proportion of caregivers than non-caregivers reported stress-related comorbidities (Table 2). Compared with non-caregivers, caregivers also reported significantly lower HRQoL (as seen in lower SF-12v2 mental component summary scores, SF-6D health state utilities and several HRQoL subcomponents), as well as a higher mean number of emergency room visits and greater presenteeism-related work impairment, overall work impairment and activity impairment (Table 2). Number of times hospitalized and visits to healthcare professionals did not differ significantly between caregivers and non-caregivers (Table 2). The same general pattern of results was observed after adjusting for covariates using multivariable regression models. Caregivers versus non-caregivers reported significantly higher odds of being diagnosed with depression (OR = 1.88), insomnia (OR = 2.19), headache (OR = 2.00) and

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Qual Life Res Table 1 Sociodemographic and health characteristics Caregiver status Caregivers of patients with lung cancer (n = 107) Age, mean (SD)

44.1 (15.8)

Non-caregivers (n = 103,868) 46.3 (15.8)

Age category, n (%) 18–29 30–39

25 (23.4) 20 (18.7)

40–49

26 (24.3)

20,260 (19.5) 18,676 (18.0) 20,488 (19.7) a

50–64

18 (16.8)

C65

18 (16.8)

18,403 (17.7)

France

18 (16.8)a

26,829 (25.8)

Germany

24 (22.4)

27,520 (26.5)

United Kingdom

19 (17.8)a

27,592 (26.6)

Italy

25 (23.4)a

13,036 (12.6)

Spain

21 (19.6)a

8891 (8.6)

Female

55 (51.4)

52,357 (50.4)

Male

52 (48.6)

51,511 (49.6)

80 (74.8) 27 (25.2)

69,824 (67.2) 34,044 (32.8)

24 (22.4)

28,814 (27.7)

26,041 (25.1)

Country, n (%)

Sex, n (%)

Education, n (%) Some college or less College degree? Household income, n (%) Low: \€20 k/£20 k Medium: €20 k/£20 k to \€50 k/£40 k

48 (44.9)

44,141 (42.5)

High: C€50 k/£40 k

17 (15.9)

16,199 (15.6)

Declined to answer

18 (16.8)

14,714 (14.2)

Single/divorced/separated/widowed

37 (34.6)

38,304 (36.9)

Married/living with partner

70 (65.4)

65,564 (63.1)

Employed full/part-time/self-employed

59 (55.1)

59,600 (57.4)

Disabled

3 (2.8)

Unemployed

45 (42.1)

Marital status

Employment status 2613 (2.5) 41,655 (40.1)

BMI category Underweight

5 (4.7)

Normal weight Overweight

48 (44.9) 42 (39.3)

44,848 (43.2) 34,363 (33.1)

2850 (2.7)

Obese

12 (11.2)

19,077 (18.4)

Unknown

0b

2730 (2.6)

Drink alcohol, per week Once or less

73 (68.2)

72,517 (69.8)

Twice or more

34 (31.8)

31,351 (30.2)

0–11 times

79 (73.8)

82,318 (79.3)

C12 times

28 (26.2)

21,550 (20.7)

No

76 (71.0)

75,936 (73.1)

Yes

31 (29.0)

27,932 (26.9)

Exercise 20? min, in past month

Smoke cigarettes

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Qual Life Res Table 1 continued Caregiver status Caregivers of patients with lung cancer (n = 107)

Non-caregivers (n = 103,868)

0

83 (77.6)

85,894 (82.7)

1

14 (13.1)

12,835 (12.4)

2

6 (5.6)

3586 (3.5)

3?

4 (3.7)

1553 (1.5)

CCI, excluding ulcersc

BMI body mass index, CCI Charlson comorbidity index, SD standard deviation a Findings represent a significant difference from non-caregivers (P \ 0.05) b

Value not compared statistically because the column proportion = 0

c

In the CCI, higher scores indicate increased risk of mortality. Information on ulcers was not collected in the National Health and Wellness Survey and so did not contribute to the CCI score

gastrointestinal symptoms (OR = 1.97), all P \ 0.02 (Fig. 1). Caregivers also reported significantly worse health status compared with non-caregivers in the three major HRQoL categories (PCS score, b = -1.91 points; MCS score, b = -3.52 points [exceeds MID]; and SF-6D health state utilities, b = -0.049 [exceeds MID], all P \ 0.02; Fig. 2) [21, 29], as well as significantly worse HRQoL in all SF-12v2 subscales (b ranging from -1.83 to -4.87, all P \ 0.03; data not shown) except vitality. Impact of caregiving on work Compared with non-caregivers, caregivers reported significantly higher adjusted mean rates of presenteeism-related impairment (27.1 vs 14.8 %), overall work impairment (32.4 vs 18.0 %) and impaired activity (32.8 vs 21.8 %) during the past week (all P \ 0.005; Fig. 3a), as well as significantly higher odds of impairment (i.e., any impairment vs zero impairment) across all four measures of WPAI (all P B 0.002; Fig. 3b). Additionally, caregivers versus non-caregivers had higher annual indirect costs with presenteeism-related impairment (€5672 vs €3429; P = 0.024) and overall work impairment (€6905 vs €4147; P = 0.028; Fig. 3c).

Discussion Consistent with a broader study of caregiving in any type of cancer [12], the current study identified a range of challenges associated with caregiving for patients with lung cancer in Europe. After controlling for relevant confounders, caregivers of patients with lung cancer were at twice the odds of reporting a number of stress- or burdenrelated conditions, including depression, insomnia,

headache and gastrointestinal disturbances, compared with non-caregivers, thus confirming and extending previous reports of significant psychological distress associated with caregiving in lung cancer [8, 14, 15]. In particular, the negative impact on mental health identified previously [14, 15] is consistent with our findings showing impaired mental health status and SF-6D health state utilities exceeding the MID, suggesting a meaningful decline in these two measures. This level of impact on mental health is not surprising, given the often overwhelming demands of caregiving for a patient with cancer. On the other hand, our study did not explore the many complex reasons that might contribute to deterioration of mental health and increased risk of stress-related conditions. Relative to the percentages of non-caregivers by country, Spanish caregivers in our study composed a significantly larger percentage of the caregiver population. This may be related to the high incidence of lung cancer in Spain compared with other European countries [30], in addition to a lack of understanding by informal caregivers in Spain of available resources and how to access them [31]. Our findings may also underscore cultural differences across countries in the perceived role of informal caregivers, as well as divergences in available formal support services. Caregivers of patients with lung cancer versus noncaregivers reported higher work and activity impairments. Previous research in the EU has estimated the total cost of informal care and indirect costs related to productivity losses attributable to mortality [7]. US-based research has estimated the significant time and economic cost associated with caregiving [11, 16, 17] and the reduction in working hours [8]. Indeed, the average age of caregivers in our study was 44.1 years with 55 % employed, placing many of these individuals in their period of prime productivity

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Qual Life Res Table 2 Health outcomes as a function of caregiver status (bivariate analysis) Caregiver status Caregivers of patients with lung cancer (n = 107)

Non-caregiver (n = 103,868)

Stress-related comorbidities, n (%) Depression

19 (17.8)a

10,787 (10.4)

Anxiety Insomnia

16 (15.0) 22 (20.6)a

13,284 (12.8) 10,967 (10.6)

Headache

19 (17.8)a

9691 (9.3)

Migraine

17 (15.9)

13,564 (13.1)

Gastrointestinal (GERD, heartburn, IBS)

31 (29.0)a

17,847 (17.2)

HRQoL (SF-12v2), mean score (SD)b Physical component summary

47.07 (9.13)

48.93 (9.65)

Mental component summary

42.97 (10.27)a

46.95 (10.51)

SF-6D health state utilities

0.678 (0.121)a

0.732 (0.135)

Bodily pain

44.68 (10.01)a

47.23 (10.74)

General health

43.87 (12.00)a

46.50 (10.95)

Mental health

44.20 (10.42)a

47.54 (10.44)

Physical functioning

48.60 (10.50)

50.38 (9.49)

HRQoL (SF-12v2 subcomponents), mean score (SD)

b

Role emotional

42.18 (11.30)

a

45.85 (11.31)

Role physical Social functioning

44.48 (9.80)a 41.66 (10.23)a

47.54 (9.85) 46.95 (10.75)

Vitality

49.16 (10.38)

50.96 (9.76)

Emergency room visits

0.40 (1.08)a

0.17 (0.99)

Number of times hospitalized

0.20 (0.61)

0.12 (1.04)

Visits to healthcare professionals

4.80 (3.95)

4.98 (6.92)

Healthcare resource use, mean (SD)

WPAI, mean score (SD)c Absenteeism

9.20 (23.30)

5.13 (18.59)

Presenteeism-related impairment

28.52 (25.65)a

15.25 (22.60)

Overall work impairment

33.84 (30.80)a

18.62 (27.29)

Activity impairment

33.64 (30.26)a

23.64 (28.01)

GERD gastroesophageal reflux disease, HRQoL health-related quality of life, IBS irritable bowel syndrome, SD standard deviation, SF-12v2 Short Form-12 version 2, WPAI Work Productivity and Activity Impairment a

Statistically different from non-caregivers (P \ 0.05)

b

Higher HRQoL scores indicate better health status

c

WPAI scores range from 0 to 100 %, with higher scores indicating worse outcome

and contribution to society. Their age also suggests that care was often provided by the patients’ children rather than their spouse. Hence, the full implications of caregiving in the context of lung cancer encompass not only quality of life, health outcomes and use of healthcare, but also its impact on work and activity. As a consequence, caregivers versus non-caregivers also had significantly higher costs associated with these work impairments. This result is aligned with those observed in the United States, where surveys also showed substantial time costs associated with caregiving for patients with lung cancer (e.g.,

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time costs of more than $72,000 over a two-year period after diagnosis) [16, 17]. However, the lack of similar data from an EU perspective makes it difficult to accurately interpret the magnitude of the costs associated with work impairment for caregivers of patients with lung cancer in our study. Interestingly, our analysis found no significant difference in the number of times hospitalized and visits to healthcare professionals between caregivers and non-caregivers. We did, however, observe a statistically significant difference in the mean number of emergency room visits,

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1.88 (P = 0.018)

Depression 1.14

Anxiety

2.19 (P = 0.002)

Insomnia

2.00 (P = 0.008)

Headache 1.19

Migraine GI Symptoms (GERD, heartburn, or IBS)

1.97 (P = 0.002)

0.0

0.5

1.0

1.5

2.0

2.5

3.0

3.5

4.0

Odds Ratio

Fig. 1 Adjusted odds of stress-related comorbidities as a function of caregiving for patients with lung cancer, after controlling for covariates (multivariable analyses). GERD gastroesophageal reflux disease, GI gastrointestinal, IBS irritable bowel syndrome

which may be explained by stress-related symptoms experienced by caregivers, but this effect disappeared in multivariable analyses. These results were unexpected, given the identified adverse effects of caregiving on HRQoL and stress-related comorbidities. While the small caregiver sample size limits interpretation, this potentially indicates that caregivers may be reluctant to seek or delay seeking care for their own health conditions while occupied and perhaps overwhelmed by their caregiving roles. Studies have shown that caregivers of cancer patients commonly ignore their own healthcare needs while providing

b = −0.049 points (exceeds the MID); P < 0.001 0.74

Non-caregivers Caregivers of patients with lung cancer 52 50

Scorea

48

b = −1.91 points; P = 0.017

48.9 47.0

care, resulting in poor physical and mental health [32, 33]. The extent to which the excess morbidity of caregivers is addressed by appropriate healthcare resources therefore represents an important area of future research. Notably, the burden experienced by caregivers of patients with lung cancer in our study appeared to be greater than or similar to that experienced by adults with chronic conditions. In particular, the effect of caregiving on mental HRQoL was greater than—and work productivity and activity impairment was similar to—that observed among adults with hepatitis C virus in the EU [34]. The effect on mental HRQoL was greater than—and absenteeism rate was similar to—that observed among adults with osteoarthritis pain in the United States [35]; and mental HRQoL was poorer than—and presenteeism-related impairment similar to—that of adults with rheumatoid arthritis in the EU [36]. Finally, HRQoL (also measured by PCS, MCS and SF-6D health utilities) was similar to that seen among caregivers of patients with any type of cancer, with slightly greater work productivity and activity impairment based on a previous study of the same NHWS data [12]. Although the stigma of lung cancer has been shown to affect family and caregivers of patients with lung cancer [37], data on patients’ smoking status were unfortunately not collected in the NHWS survey. The current study adds important information to our understanding of the burden of caregiving in lung cancer, although the results need to be considered cautiously due to several limitations. For instance, the analysis was restricted

0.732

0.73

b = −3.52 points (exceeds the MID); P < 0.001

0.72 0.71 0.70

47.0

0.69

46

0.682

0.68

43.4

44

0.67 42

0.66

40 0

0.65 0.00

PCS Score

MCS Score

Fig. 2 HRQoL of caregivers of patients with lung cancer, after controlling for covariates (multivariable analyses). b represents the change in the outcome variable associated with a one-unit change in the covariate. aFor PCS and MCS, MID = 3 points and for SF-6D health utilities, MID = 0.03 points [21, 29]. Differences exceeding

SF-6D Health Utilities MID were found to be meaningful in previous research. b beta, HRQoL health-related quality of life, MCS mental component summary, MID minimally important difference, PCS physical component summary

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Percentage Impairment

A

45 40 35 30 25 20 15 10 5 0

Non-caregivers Caregivers of patients with lung cancer P = 0.004a

P = 0.003a

P = 0.001

32.4

32.8

a

27.1 21.8 18.0 14.8 8.3 4.8

Absenteeism Presenteeism Overall Work Impairment

Activity Impairment

B 2.56 (P = 0.002)

Absenteeism

Presenteeism

2.97 (P < 0.001)

Overall Work Impairment

2.88 (P = 0.001)

Activity Impairment

2.24 (P = 0.001)

0.0

1.0

2.0

3.0

4.0

5.0

6.0

Odds Ratio €11,000 €10,000 €9,000 €8,000 €7,000 €6,000 €5,000 €4,000 €3,000 €2,000 €1,000 €0 -€1,000

Indirect Annual Costs (2010 Euros)

C

Non -caregivers Caregivers of patients with lung cancer P = 0.024a

P = 0.028a

€ 6,905 € 5,672 € 4,147 € 3,429 € 2,114 €1,261

Absenteeism Presenteeism Overall Work Impairment

Fig. 3 Results of multivariable analyses based on WPAI, as a function of caregiving for patients with lung cancer, after controlling for covariates. a Adjusted productivity-related impairment. b Adjusted odds of impaired work productivity and activity (any impairment versus no impairment). c Annual costs of work productivity-related impairment. aP values reflect significant adjusted ratios of impairment for caregivers of patients with lung cancer versus non-caregivers. WPAI Work Productivity and Activity Impairment questionnaire

to five countries where data had already been collected for NHWS; other countries are clearly important and should be explored in future studies with different recruitment methods and adequate samples, to provide country-level data. This was a cross-sectional analysis of survey data and therefore does not provide definitive information about causal relationships among the different study factors—for example, between caregiving and HRQoL. Longitudinal studies might help to confirm our findings. Although the NHWS sample selection was designed to mimic each country’s adult population, the method of collecting data

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online may have led to sample bias. Based on the reported age ranges in the current study, caregivers may have been skewed toward a relatively young, healthy cohort of Internet users; less IT-proficient individuals or those with limited Internet access might have been underrepresented. This may have resulted in underestimation of the full caregiving burden in the population. We also pooled data across European countries to provide maximum statistical power and were therefore unable to detect any variation across countries. In this context, the relative underrepresentation of Italy and Spain in the sample population may have influenced our findings. The influence of different healthcare delivery models, which may differ with regard to extent of cost coverage and home care services, also could not be analyzed by specific country. Another potential limitation of this study is that information on the relationship between caregivers and patients was not collected. This information could have provided further insights into the caregiving experience, as the role of the caregiver likely differs depending on the relationship with the patient (e.g., marital vs adult child caregiving). Based on the mean age of caregivers and impact on work productivity, we believe a large proportion of the caregivers were adult children, but we are unable to confirm this with the limited literature in this area. In addition to caregiver relationship with the patient, variables such as whether the caregiver is living with the patient and the amount of time provided per week for care are important to consider in future research. An additional potential study limitation is that the control group was many times larger than the caregivers group, with potential influence on the direction and extent of the adjustment for covariates. Random sampling, matching and propensity matching are alternative approaches to analysis under such circumstances. However, the use of the full sample, besides providing a unique real-world control group that is often not available in the literature, also allowed us to maximize statistical power to detect moderate effect size differences between the relatively small caregivers sample and controls. Additionally, our results have the advantage of generalizing to a population with a broader range of characteristics. Furthermore, bivariate results show that there is little overall disparity between caregivers and non-caregivers in the first place (i.e., few significant bivariate differences), suggesting that matching versus regression results would be similar in our case. Finally, even if there were a good basis for matching versus our regression approach, research suggests that results are likely to be very similar at any rate across propensity scoring versus traditional regression methods [38]. One study suggests that this may especially be true in a case like ours, where substantial overlap is seen in propensity scores across the groups of interest [39].

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In addition, the NHWS survey did not collect patient characteristic and disease-related information, such as smoking, cancer stage, type of metastases, symptom burden or treatment, all of which might be expected to influence caregiver burden. Previous studies have shown a positive correlation between symptom severity and caregiving cost [13], as well as greater economic burden and time devoted to caregiving for patients diagnosed with advanced versus earlier stage disease [16, 17]. Similarly, details of formal care or support from other sources, as well as informal caregiving, were not collected in the survey, and the lack of this information may underestimate the societal burden of lung cancer. Additionally, the analysis did not account for any symptoms or health issues that caregivers themselves may have experienced before adopting their caregiving role, such as a history of depression, anxiety or insomnia. The study did, however, control for other likely confounding factors, such as caregiver gender, income and marital status. Finally, the economic burden of caregiving in the current study was quantified only across work-related domains and did not account for other costs of caregiving. These might include any additional paid care, health insurance deductibles, services not covered by insurance, such as transport and formal home care and lost salaries or early retirement. As with the above variables not collected in the NHWS survey, the lack of information about the full costs of caregiving means that the total burden is likely to be an underestimate. Despite these limitations, our study provides important insights into the apparently underreported experience of European caregivers of patients with lung cancer, and confirms the multifaceted and substantial burden associated with this caregiving. Furthermore, the demand for informal care for cancer patients is likely to grow with the projected rise in cancer rates, with a consequential increase in the overall caregiving burden on society. Consequently, strategies are needed to relieve the burden on informal caregivers of cancer patients, such as increased and better nursing care [40, 41]. More research is urgently needed to improve our understanding of the unique set of psychological, physical, economic and other challenges associated with caregiving in the lung cancer setting, as well as to address the development of personalized, evidence-based support and interventions for caregivers. Acknowledgments Professional medical writing assistance was provided by Mark Palangio and professional editing assistance was provided by Karin McGlynn at StemScientific and was funded by Bristol-Myers Squibb. The authors would like to acknowledge Errol J. Philip, who provided support with background research on behalf of Kantar Health, with funding from Bristol-Myers Squibb.

Conflict of interest J. Jassem has no competing interests to disclose and has not received financial support or compensation for this publication; J. R. Penrod and I. Gilloteau are employees of BristolMyers Squibb and have stock ownership in Bristol-Myers Squibb; and A. Goren is an employee of Kantar Health, which received funding from Bristol-Myers Squibb for conducting the study on which the manuscript is based.

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Caring for relatives with lung cancer in Europe: an evaluation of caregivers' experience.

Informal caregiving for cancer patients is associated with substantial costs and negative health impact. This study investigated the health, humanisti...
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