8th LuCE Report 2023

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LuCE REPORT

ON LUNG CANCER
November 2023

Financial impact of lung cancer:


A European perspective
Written and edited by:

Lung Cancer Europe (LuCE)

Coordinated by:

Fundación MÁS QUE IDEAS (Spain)

Graphic concept and design:

Barcia Studio: barciastudio.com

Publication date:

November 2023

Report available on the LuCE website:

www.lungcancereurope.eu

Creative Commons License:

Attribution - NonCommercial - ShareAlike

4.0 International (CC BY-NC-SA 4.0)

info@lungcancereurope.eu
8 th
LuCE REPORT
ON LUNG CANCER
Financial impact of lung cancer:
A European perspective
November 2023

All the Report materials are accessible here:


WELCOME TO THE 8th EDITION
OF THE LuCE REPORT
This is an annual initiative led by lung cancer patient organisations across
Europe with the purpose of raising awareness relating to the main challenges
faced by people impacted by this disease.

With the support of :

ALK POSIT VE Belgium

LuCE Individual members involved in this project:


Anne-Marie Baird (Ireland) and Ewelina Szmytke (Poland)
Lung cancer is a diagnosis that no one wants to receive and its impact reaches far beyond
the realm of physical health. It is a diagnosis that can bring about profound changes in
the lives of those affected and their loved ones, extending to the financial well-being of
individuals and families. In this report, we explore the often-overlooked aspect of the
financial burden that accompanies a lung cancer diagnosis.

The financial implications of lung cancer are far-reaching and multifaceted. From the
immediate costs of medical treatment and medications to the long-term financial
consequences of reduced income, increased expenses, a lung cancer diagnosis can place
immense strain on individuals and families. It is a stark reminder that the burden of this
disease extends beyond the medical arena and into the realm of financial stability and
security.

The report delves into the various facets of the financial impact of lung cancer, seeking
to shed light on the challenges faced by those on this difficult journey. We examine the
costs associated with diagnosis, treatment, and follow-up care, as well as the toll it takes
on employment, income, and the ability to access necessary resources. But the report is
not just about highlighting the challenges; it also offers insights into potential solutions
and avenues for support.

Our goal is to contribute to a


comprehensive approach to lung
cancer care.

It is our sincere hope that this report serves


as a valuable resource for healthcare
professionals, policy makers, advocates,
and most importantly, those individuals Debra Montague
and families who are facing the challenges Board member of Lung Cancer Europe (LuCE)

of lung cancer. Ultimately, our goal is to


contribute to a comprehensive approach to lung cancer care, one that not only focuses
on medical treatment but also takes into account the holistic well-being of patients and
their families.

As we work collectively to raise awareness, advance research, and improve access to


care, let us not forget the importance of addressing the financial impact of lung cancer.
We dedicate this report to our board member,
Marjo Forsblom,
who passed away on the 22nd October 2023
Marjo was a beautiful shining
light in our community.
May she rest in peace.
Table of
contents

8th LuCE REPORT ON LUNG CANCER | 08 | Lung Cancer Europe (LuCE)


1. ABOUT THIS REPORT ............................................................................................................... 10

2. KEY FINDINGS ............................................................................................................................. 15

3. RESULTS .......................................................................................................................................... 18

3.1. MONETARY STRAIN: The cost of lung cancer .......................................................... 18


3.2. FINANCIAL DISTRESS: The impact on personal finances .................................... 26
3.3. WELLBEING: Repercussions of financial stress on health .................................... 37
3.4. SUPPORT: Dealing with financial toxicity .................................................................. 46

4. CALL-TO-ACTION ....................................................................................................................... 52

5. ACKNOWLEDGEMENT ............................................................................................................ 53

6. LUNG CANCER EUROPE (LuCE) ............................................................................................. 54

7. ANNEX I. Detailed breakdown of participant characteristics ................................... 60

8. REFERENCES ................................................................................................................................. 66

8th LuCE REPORT ON LUNG CANCER | 09 | Lung Cancer Europe (LuCE)


1. ABOUT THIS REPORT
1.1. DESCRIPTION AND OBJECTIVES

Lung Cancer Europe (LuCE) is an independent non-profit organisation,


committed to making lung cancer a European health priority. LuCE, as
the voice of Europeans impacted by lung cancer, works to ensure that
people living with this disease get the care they need to achieve the
best possible outcomes.

LuCE advocates for a person-centred multidisciplinary care


approach, one that requires an understanding of how the disease
impacts people’s lives. This is why LuCE is committed to providing
evidence-based documents that share real-world data and insights
from people with lung cancer and their loved ones.

Previous LuCE Reports highlighted the great physical, emotional, and


social repercussions of lung cancer. These reports implied that lung
cancer negatively impacts personal finances. Less income and more
medical and non-medical expenses were reported by a substantial
number of participants. These findings emphasise the need to
understand the scope and repercussions of the financial difficulties
associated with lung cancer.

This report titled `Financial impact of lung cancer: A European


perspective´ is a descriptive research analysis that explores the
economic burden of lung cancer and its treatments, as reported by
people diagnosed with lung cancer and caregivers. For the purpose of
this report, the term `caregiver´ refers to informal caregivers: people
who assist invidivuals diagnosed with lung cancer, as family, friends or
partners (not healthcare professionals).

8th LuCE REPORT ON LUNG CANCER | 10 | Lung Cancer Europe (LuCE)


The findings of this report suggest that a negative financial burden is
common after diagnosis. Data presented helps us to understand the
real economic impact of this disease on people’s lives. It stresses the
need for multidimensional interventions to effectively mitigate these
difficulties.

RESEARCH OBJECTIVES:

• To explore the extent of financial toxicity among people


impacted by lung cancer.

• To understand the causes of the economic impact of lung cancer


on the household financial situation.

• To explore the factors associated with high financial distress


among people impacted by lung cancer.

• To identify how people cope with life when facing financial


difficulties.

• To identify relevant interventions to help people to reduce and/


or deal with financial repercussions.

8th LuCE REPORT ON LUNG CANCER | 11 | Lung Cancer Europe (LuCE)


1.2. METHODOLOGY

FEB 2023 Objective: To identify topics of interest around financial toxicity


in lung cancer.
Online survey:
LuCE members Method: Self-filled online survey via the SurveyMonkey®
platform.

Number of responses: 31

FEB - MAR 2023 Objective: To design an online survey aimed at people impacted
by lung cancer.
Literature review
Method: Search of databases, mainly PubMed®. Publications
were limited to the English language. References are provided at
the end of this report.

MAR - JUL 2023 Designed by Fundación MÁS QUE IDEAS (Spain) and reviewed
by the LuCE Report Working Group.
Online survey:
Development and Self-filled online survey via the SurveyMonkey® platform.
dissemination
Anonymous survey without questions relating to personal or
identifiable information.

Survey was available in 16 languages: Croatian, Danish, Dutch,


English, Finnish, French, German, Greek, Hungarian, Italian,
Polish, Portuguese, Romanian, Slovenian, Spanish and Ukrainian.

The survey was active from May 26th until July 5th, 2023. It was
disseminated through the communication channels of LuCE and
its members.

Number of responses: 1,161 (834 patients and 327 caregivers)

JUL - OCT 2023 A quality control check of the data was performed to identify and
remove invalid answers (i.e., incomplete surveys and responses
Data analysis from outside the WHO European region).

A survey was considered valid when the participant had


completed, at least, the first series of questions on the financial
impact of lung cancer.

Data generated from the different language versions were


integrated together using SurveyMonkey® analytic tools.
National comparisons were performed only when there were
more than 24 participants per country (n=12 countries).

All data was combined to create a draft of this report which was
reviewed by the LuCE Report Working Group.

8th LuCE REPORT ON LUNG CANCER | 12 | Lung Cancer Europe (LuCE)


1.3. PARTICIPANT CHARACTERISTICS: Overview

The total number of survey participants was 1,161: 834 people diagnosed with lung
cancer (71.8%) and 327 people caring for someone with lung cancer (28.2%). The number
of responses per question varies because most questions were not mandatory.

The most relevant research limitations were female over-representation (76.5%), and the
underrepresentation of those older than 64 (22.2%).

A brief snapshot of the participant characteristics is provided below. Complete survey


participants characteristics can be found in Annex I.

People with lung cancer People caring for someone with


(n=834) lung cancer (n=327)

Women 75.8% Women 78.3%


Men 23.4% Men 21.1%

35-44 8.9% 35-44 26.0%


45-54 25.9% 45-54 24.2%
55-64 39.0% 55-64 21.4%

Top 4 countries: Top 4 countries

The United Kingdom 12.7% Greece 22.6%


The Netherlands 10.3% Ukraine 22.0%
Germany 10.0% Spain 9.8%
Spain 9.2% The United Kingdom 8.6%

Work situation at diagnosis Work situation at diagnosis

Employee: full time 44.1% Employee: full time 48.3%


Retired 20.8% Retired 18.4%

8th LuCE REPORT ON LUNG CANCER | 13 | Lung Cancer Europe (LuCE)


People with lung cancer People caring for someone with
(n=834) lung cancer (n=327)

Financial situation before diagnosis Financial situation before diagnosis

In control of financial In control of financial


74.4% 67.6%
situation situation

Able to meet monthly Able to meet monthly


78.8% 71.4%
expenses expenses

Type of lung cancer

Non-small cell Non-small cell


lung cancer 74.1% lung cancer 64.2%
(adenocarcinoma) (adenocarcinoma)

Tumour biomarker

ALK 26.0% ALK 14.4%


Unknown 18.5% Unknown 23.9%
EGFR 18.3% EGFR 13.2%
No mutations 14.2% No mutations 20.3%

Stage at diagnosis

Stage IV 50.8% Stage IV 56.6%


Stage I-II 28.6% Stage I-II 20.2%
Stage III 17.3% Stage III 21.7%

Time from diagnosis

Diagnosis < 1 year 23.4% Diagnosis < 1 year 41.0%


Diagnosis: 1-3 years 39.3% Diagnosis: 1-3 years 36.4%

8th LuCE REPORT ON LUNG CANCER | 14 | Lung Cancer Europe (LuCE)


2. KEY FINDINGS
THE COST OF LUNG CANCER

• Most participants experienced both


medical (73.5%) and non-medical
expenses (87.2%) because of lung
cancer.

• The costs reported most often were


travel for medical reasons (83.7%),
household utility bills like telephone
or heating (77.3%), and personal
items such as dressings, bandages,
and creams (72.3%). • The repercussions on financial income
were mainly related to employment,
• 62.9% reported reduced household with 1 out of 4 participants citing an
income since diagnosis. Half (49.5%) inability to work as one of the reasons
experienced a decrease of more than for a decrease in income, followed by
30% in their income compared to the work absence (27.9%), and retirement
situation prior to the diagnosis. due to illness (26.8%).

FINANCIAL DISTRESS

• 66.7% reported financial difficulties (46.3%), and those diagnosed less


because of the disease. The financial than 1 year (45.5%).
burden was more frequently
reported by caregivers (77.9%) than
people with lung cancer (62.3%).

• 31.6% used more than 20% of their


household income to pay expenses
related to lung cancer.

• 36.8% found it difficult to live on their


usual household income because of
lung cancer. This was more common
among people with a low-income
prior to diagnosis (73.7%), caregivers

8th LuCE REPORT ON LUNG CANCER | 15 | Lung Cancer Europe (LuCE)


• Almost half of participants (45.7%) household expenditure to deal with
had difficulties paying expenses lung cancer-related expenses. The
associated with lung cancer. Among most frequent adjustment was to cut
these, house expenses - utility down leisure activities (47.6%).
bills, home care, housekeeping,
etc.- (49.4%) and hospital visit costs • 26.9% reported higher levels of
(39.8%) were the most difficult to pay. debt following diagnosis, and 22.6%
used savings in order to mitigate the
• The level of perceived financial financial burden.
distress doubled after a lung cancer
diagnosis: 46.8% felt financially • Factors associated with high financial
stressed after diagnosis (vs. 27.7% toxicity include a lack of a public
before) and 28.6% were not able to health system that covers lung cancer
meet their monthly expenses (vs. treatment and care, low income at
14.5% before). baseline, caregiving, recent diagnosis,
young patients and country of
• 64.7% were forced to reduce their residence.

HEALTH REPERCUSSIONS OF PEOPLE EXPERIENCING FINANCIAL


DIFFICULTIES

• 88.4% stated that at least one sphere self-care or adherence to treatment


of their life was negatively affected by based on economic considerations.
economic repercussions. Those who were experiencing
economic stress were more likely to
• The most significant repercussions forgo or delay care (70.2% vs. 10.8%).
reported were related to mental
health (67.5%), followed by lifestyle • A substantial number of people
and social activities (59.0%). impacted by lung cancer (with
or without financial difficulties)
• Participants with a high economic considered that their personal
burden cited poorer health in all finances controlled their access to
dimensions. supportive services (40.5%), early or
rapid diagnosis (38.6%), and access to
• 82.1% considered that financial innovative treatments or medicines
difficulties were a barrier to treatment, (35.0%).
recovery, and care.
• Higher economic repercussions were
• 26.5% of respondents (with or without experienced by caregivers and people
financial difficulties) admitted having from Eastern European countries
made decisions that affected their across all domains.

8th LuCE REPORT ON LUNG CANCER | 16 | Lung Cancer Europe (LuCE)


SUPPORT AND RESOURCES
• 1 out 5 participants sought financial • 28.7% admitted to having discussed
support from public health services finances with their healthcare team,
(21.6%) or social services (20.6%). and only a few (5.7%) reported doing
However, 40.8% of the respondents so frequently.
who sought help from social services
and 29.7% who sought support from • Only a minority who reported
healthcare systems did not receive economic difficulties (17.4%) had
the assistance that they needed. ever talked with social workers or
discussed their situation with social
• 39.2% stated that there were no services.
public financial benefits for people
with cancer in their country, and • Financial or material support
21.3% did not know whether these provided by loved ones (not
existed. necessarily by their caregivers) was
reported by 30.4%.
• Although caregivers also experienced
significant financial strain, 46.7% did • Support for costs related to
not know whether public benefits for medication and healthcare was
caregivers existed in their countries, considered a priority, with half
while 26.8% directly said there was (53.0%) identifying that this was the
no financial support available for financial support most needed.
caregivers.

8th LuCE REPORT ON LUNG CANCER | 17 | Lung Cancer Europe (LuCE)


3. RESULTS
3.1. MONETARY STRAIN: The cost of lung cancer

Financial toxicity is the negative impact of the cost of care on financial well-being. People
impacted by lung cancer face high out-of-pocket expenses associated with medical care, which
is not covered or reimbursed by government or insurers. Apart from medical costs, other factors
contributing to this financial hardship include non-medical and indirect costs.

A. Direct medical costs

Buying
Most participants live in countries where there is a public health
personal
items for lung system that covers treatment and care*. However, even in countries
cancer is the with universal healthcare, additional out-of-pocket (OOP) expenses
most frequent
medical cost are commonplace1.

People diagnosed with lung cancer and caregivers can incur different cancer-related
expenses which cause financial hardship. Three out of 4 (73.5%) had paid some medical
related expenses because of lung cancer. Most participants had experienced costs for
personal items such as dressings, bandages, and creams (72.3%), pharmaceutical bills
(63.2%) and hospital bills (56.3%).

Medical expenses because of lung cancer (LC)


(n = 827 people with LC / n = 327 caregivers)

PEOPLE WITH
ALL PARTICIPANTS CAREGIVERS
LUNG CANCER

Personal items 72.3% 69.9% 78.3%

Pharmaceutical bills / co-payment 63.2% 61.7% 67.2%

Hospital bills 56.3% 51.4% 68.7%

Healthcare professional services 49.9% 47.7% 55.2%

Private consultations with medical


49.9% 42.0% 69.6%
professionals

Testing: scans, molecular diagnosis,


45.8% 38.0% 65.6%
biopsies, etc.

TABLE 1. Medical expenses because of lung cancer.

*
Mentioned by 69.3%. Another 20.4% also mentioned it but stated that some co-payments and fees existed.

8th LuCE REPORT ON LUNG CANCER | 18 | Lung Cancer Europe (LuCE)


We paid for the entire cycle of As Figure 1 shows, private consultations,
chemotherapy and radiotherapy, and healthcare services (psychologists,
which were not available to us in nutritionists, etc.) are the medical costs
Croatia. (Caregiver from Croatia) with the highest impact on finances.

The differences in responses between


Some new medicines are not
people with lung cancer and caregivers
approved in Finland. The cost is paid
were remarkable. Caregivers were much
completely by the patient, which is
more likely to report the impact of medical
unfair! (Patient from Finland)
costs, especially hospital bills (75.7%
vs. 52.3% in people with lung cancer),
Walker, crutches, cane, incontinence personal items (67.2% vs. 45.8%), and
products, painkillers, anti-bedsore pharmaceutical bills (66.2% vs. 46.3%).
mattress, dressing material. Many
things that we buy with our own
money. (Caregiver from Ukraine)

Medical expenses: High and medium costs ALL


(n = 827 people with LC / n = 327 caregivers) PARTICIPANTS

People with LC Caregivers

Private consultations with 68.4% 75.2%


medical professionals 85.6%
Healthcare professional 63.0%
services 79.0% 68.0%

Testing 58.5%
75.5% 65.4%

Hospital bills 52.3% 60.4%


75.7%

Personal items 45.8% 52.5%


67.2%

Pharmaceutical bills / 46.3%


co-payment 66.2% 52.3%

FIGURE 1. Medical expenses: High and medium costs.

8th LuCE REPORT ON LUNG CANCER | 19 | Lung Cancer Europe (LuCE)


I could not access Part of the preparations for the side effects
physiotherapy and psychiatric of the therapy were costly, and some tests
treatments because they were were paid privately because the urgency of
too expensive. (Patient from the situation. (Caregiver from Croatia)
France)

I need lymphatic drainage due Small cell lung cancer is a poorly


to edema and swelling, typical understood disease. We had to do
side-effects of the biological additional tests at our own expense. We
medicine I take. The costs of live in a small town where there are no
these treatments are high and good specialists so we had to travel to the
they are only available privately. capital and order paid services at private
(Patient from Italy) oncology clinics. (Caregiver from Ukraine)

8th LuCE REPORT ON LUNG CANCER | 20 | Lung Cancer Europe (LuCE)


B. Direct non-medical costs

Outside of medical and healthcare costs, people impacted by lung


cancer also reported non-medical costs related to treatment and Transportation
for medical
care, such as transportation or hospital parking. In addition, other reasons was the
expenses may arise from the disease, such as the care of family most frequent
non-medical
members or home adaptations. These costs increase financial cost
distress and exacerbate disparities in care.

Table 2 shows the highest non-medical cost reported was travel and transport for care,
tests, and treatments (83.7%) followed by household utility bills such as telephone or
heating (77.3%).

It is notable that caregivers reported more costs than people with lung cancer in all
domains. The greatest difference was found in expenses related to dependent care,
where 60.8% of caregivers reported concerns vs. 25.2% of patients. The second largest
difference was observed in home modifications and adaptions (48.3% vs. 28.5%).

Non-medical expenses because of lung cancer (LC)


(n = 826 people with LC / n = 327 caregivers)

PEOPLE WITH
ALL PARTICIPANTS CAREGIVERS
LUNG CANCER

Travel and transport 83.7% 81.3% 89.8%

Household utility bills 77.3% 74.5% 84.3%

Eating out 64.5% 59.1% 77.9%

Hospital parking 60.4% 60.1% 61.3%

Homecare / housekeeping 49.8% 45.4% 60.8%

Care of family members 35.6% 25.2% 60.8%

Overnight accommodation 34.8% 29.6% 47.7%

Home modifications / adaptations 34.2% 28.5% 48.3%

TABLE 2. Non-medical expenses because of lung cancer.

8th LuCE REPORT ON LUNG CANCER | 21 | Lung Cancer Europe (LuCE)


I was hospitalized We live in a city where It is also expensive
for 25 days due to a there is no oncologist to heat your home
complication. There or pulmonology and with lung cancer
were many expenses department. So you one cannot afford to
for the family who must drive 2h 30min be cold as you feel it
had to visit me. It to get to the nearest anyway and this can
was far from home hospital in the region impact one’s health.
and train tickets are which offers these (Patient from the United
expensive. (Patient specialties. (Caregiver Kingdom)
from Denmark) from France)

Both people with lung cancer and caregivers selected household utility bills as
the highest non-medical expenditure (Figure 2). However, there were significant
differences between the two groups. Caregivers reported the cost of caring for
other family members as significant much more frequently than patients (82.0%
vs. 53.1%). This situation was also observed in expenses associated with the home
setting. These included homecare (75.8% vs. 58.3%) and expenses associated with
home modifications imposed by the disease (74.0% vs. 53.6%).

Non-medical expenses: High and medium cost


(n = 826 people with LC / n = 327 caregivers)
ALL
People with LC Caregivers PARTICIPANTS

Household utility bills 74.5% 77.2%


83.3%

Care of family members 53.1% 67.4%


82.0%

Homecare / housekeeping 58.3% 64.4%


75.8%
Home modifications / 53.6%
adaptations 62.0%
74.0%

Overnight accomodation 55.9% 61.9%


71.1%
51.2%
Travel and transport 72.4% 57.6%

Eating out 45.1%


66.0% 52.3%

Hospital parking 47.7%


57.7% 50.6%

FIGURE 2. Non-medical expenses: High and medium costs.

8th LuCE REPORT ON LUNG CANCER | 22 | Lung Cancer Europe (LuCE)


C. Indirect costs: income reduction Has your household income been
reduced after the lung
Literature shows that financial distress cancer diagnosis?
is not only associated with higher (n = 834 people with LC / n = 237 caregivers)
expenses2. Indirect costs result from the People with LC Caregivers

loss of resources and opportunities due


to lung cancer. After diagnosis, people

66.4%
61.5%
may experience varied levels of income

38.5%

33.6%
reduction, mainly because of salary loss3.

According to our survey, 62.9% reported


reduced household income since
diagnosis (Figure 3). This impact was All participants All participants
reported slightly more often among 62.9% 37.1%

caregivers (66.4%) than patients (61.5%).


FIGURE 3. Income reduction.

We observed differences in the loss of income by country. The


62.9% highest prevalence of income loss was reported by participants
experienced
income from Ukraine (78.7%), The Netherlands (76.7%) and Greece (73.9%).
reduction On the contrary, the lowest prevalence was reported by people from
Denmark (36.5%), Italy (49.3%), and Spain (49.3%).

Of the 710 respondents who experienced a reduction in income, it is remarkable that


75.0% of them experienced a decrease higher than 20% and half (49.5%) experienced a
decrease higher than 30% compared to life before lung cancer (Figure 4).

Once again, results show differences between countries. The highest income loss (over
30%) was reported by people from Ukraine (82.2%) and Italy (66.7%). In contrast, people
from Spain (31.6%) and France (39.1%) were the least likely to report losses above 30%
compared to the financial situation before the diagnosis. The reasons for these differences
could be due to better income replacement programmes funded through social welfare
systems by individual governments4.

Income has declined We only receive now I was put on category


so everything is more 450 euros from the 2 invalidity by my
difficult to finance. pension of my husband employer and I receive a
(Patient from The who is ill, and our rent pension that makes me
Netherlands) is 300 euros. (Caregiver live below the poverty
from Greece) line. (Patient from
France)

8th LuCE REPORT ON LUNG CANCER | 23 | Lung Cancer Europe (LuCE)


How much would you say the household income has
decreased compared to your life before lung cancer?
(n = 501 people with LC / n=209 caregivers)

People with LC Caregivers

34.9%
30.5%
26.4%
Not sure: 4.1% 22.0%

18.2%
17.7%

16.8%
16.4%
4.6%

4.3%

4.5% 16.8% 25.1% 17.7% 31.8% All participants

Less than 10% 10% - 20% 20% - 30% 30% - 40% More than 40%

FIGURE 4. Level of income reduction.

Repercussions on financial income are mainly related to employment. Patients and family
members are often unable to maintain full employment, often deciding to reduce working
hours or quitting their jobs as a consequence of the disease, either directly or through
caregiving4. Even if most countries in Europe provide paid sick leave, these compensation
benefits are frequently provided only for a limited time5, or are insufficient to cope with
daily expenses. Literature suggests that some contributors to financial toxicity are
reduced ability to work, limitations in working hours or the type of jobs accessible, and
reduced wages because of cancer6.

As illustrated in Table 3, 1 out of 4 identified the inability to work as one of the reasons
for the decrease in income. The next most cited reasons were work absences (27.9%) and
retirement due to illness (26.8%). The impact of cancer on employment increases financial
hardships and reduces the quality of life of people with lung cancer and their families7.
Previous evidence has shown that employed individuals are at greater risk of suffering
financial stress after diagnosis, since they are more likely to experience a significant drop
in income8.

8th LuCE REPORT ON LUNG CANCER | 24 | Lung Cancer Europe (LuCE)


What have been the reasons for the household income reduction?
(n = 495 people with LC / n = 200 caregivers)

ALL PEOPLE WITH


CAREGIVERS
PARTICIPANTS LUNG CANCER

Unable to work 39.7% 42.6% 32.5%

Work absence 27.9% 25.3% 34.5%

Retirement due to illness 26.8% 29.5% 20.0%

Reduction in work time 18.3% 16.8% 22.0%

Decline of productivity 16.0% 15.0% 18.5%

Job loss 15.4% 13.9% 19.0%

Not getting bonuses or benefits from work 10.6% 11.9% 7.5%

Less income because of changing


4.3% 3.6% 6.0%
employment

TABLE 3. Reasons for income reduction.

As a self-employed My husband is sick. I I started by receiving a


person, there is no can’t stay in any job full salary during sick
social safety net because I have to take leave. Now I get only
and not all costs can care of him and run to 70%, which is a big
be absorbed by my the hospitals. (Caregiver difference. (Patient from
partner. (Patient from from Ukraine) The Netherlands)
The Netherlands)

I work as an entrepreneur but I can’t My wife had to reduce her workload.


attend my business. I have to close the (Patient from France)
store and help my father financially,
morally, and physically for treatment.
Working part-time means less money.
There is no time for work. (Caregiver
(Patient from The United Kingdom)
from Ukraine)

My husband I had to stop I am on leave and receiving


stopped working working to take medical leave. And it’s
to take care of me. care of my father. very little compared to
(Patient from The (Caregiver from what I earned. (Patient
Netherlands) Spain) from Spain)

8th LuCE REPORT ON LUNG CANCER | 25 | Lung Cancer Europe (LuCE)


3.2. FINANCIAL DISTRESS: The impact on personal finances

Increased household expenses and reduced income are negative impacts of lung cancer.
However, some people did not find that the financial burden resulted in hardship. Personal
situations, context, perception, and capacity to cope influence how much distress each person
feels from these changes3.

Financial hardship relates not only to the quantifiable impact, but also to the perceived
distress that people experience because of the costs associated with care and treatment.

Figure 5 shows the magnitude of economic impact: 66.7% of people


66.7% affected by lung cancer reported financial challenges as a result
experienced of the disease. These difficulties were more frequently reported
financial
difficulties by caregivers (77.9%) than patients (62.3%). The impact was very
significant (quite a bit / very much) for 1 out of 4 participants (22.6%
of people with lung cancer and 36.6% of caregivers).

To what extent have you experienced financial difficulties


as a result of lung cancer care and treatments?
(n = 802 people with LC / n = 312 caregivers)

People with LC Caregivers


37.7%

Not sure: 7.4%


22.8%
22.2%
22.1%

19.9%
18.6%
17.6%

16.7%
14.5%

8.1%

All participants 33.3% 22.4% 17.9% 16.6% 10.5%

Not at all A little bit Somewhat Quite a bit Very much

FIGURE 5. Extent of financial difficulties.

8th LuCE REPORT ON LUNG CANCER | 26 | Lung Cancer Europe (LuCE)


One of the main factors associated with financial strain is the amount of income required
to pay for expenses related to lung cancer. Lung cancer treatment and care may lead to
catastrophic expenses, even in countries with universal public healthcare systems4.

Our findings show that 21.2% of people impacted by lung cancer


needed more than 30% of their household income to pay for 1 out of 5
reported
expenses related to lung cancer (Figure 6). This level of spending
catastrophic
is defined as `catastrophic´ by literature, and even some studies spending due to
suggest that it must be considered catastrophic if higher than 20%9 lung cancer

(which represents 31.6% of the people surveyed in our research).

What percentage of your household monthly income


are used to pay for expenses related to lung cancer?
(n = 830 people with LC / n = 325 caregivers)

People with LC Caregivers


34.7%

Not sure: 7.4%

26.2%
20.1%
19.1%

16.6%

15.4%
13.0%

10.7%
9.2%
8.4%
8.0%

4.9%

All participants 11.6% 30.3% 19.1% 10.4% 6.1% 15.1%

None Less than 10% 10 - 20% 20 - 30% 30 - 40% More


than 40%
FIGURE 6. Income used to pay lung cancer expenses.

Expenses related to lung cancer affected the capacity for managing


1 out of 3 found finances in such a way that, according to our research, 36.8%
it difficult to
live on their
of people found it difficult to live on their household income
household (Figure 7). This is a significant percentage, and it is more severe
income
among caregivers than people with lung cancer (46.3% vs. 33.3%).

8th LuCE REPORT ON LUNG CANCER | 27 | Lung Cancer Europe (LuCE)


How difficult is it for you to live on your total household
income right now because of the lung cancer diagnosis?
(n = 711 people with LC / n = 277 caregivers)
People with LC Caregivers ALL
PARTICIPANTS

Very easy 11.4% 11.6%


6.9%

Easy 18.0%
11.2% 16.1%

Neutral 37.4%
35.7% 36.9%

Difficult 23.4% 25.2%


30.0%

Very difficult 9.9% 11.6%


16.3%

FIGURE 7. How difficult is to financially live after diagnosis.

Difficulties living on the current household income was more frequently reported
by people with lower income levels prior to diagnosis. A total of 73.7% of survey
respondents who were not able to meet their monthly expenses before diagnosis
confirmed that they were experiencing difficulties at the time of completing this survey.
This percentage fell to 30.3% in the group with higher income status at baseline*.

Time from diagnosis is also a predictor of higher risk to experience economic difficulties.
The more recent the diagnosis was, the more difficult it was for patients to live on their
income. A total of 45.5% of patients diagnosed less than 1 year ago admitted having
difficulties, compared with 25.4% of those diagnosed more than 5 years ago. In people
who finish cancer treatment, evidence suggests that the financial burden decreases in
the months to years after cancer treatment is completed10. However, increased costs may
persist even years after diagnosis11. They reach a maximum during the last year of life12.

I need to go back With the help I receive, I The price of treatment


to work as soon as can pay everything, but is several times higher
possible. If I don’t start I have little capacity to than the average
working, my income save, and I have a big monthly income of my
will drop by 40%. mortgage to pay for the family. (Patient from
(Patient from Spain) house. (Patient from Ukraine)
Italy)

*
Participants who responded `I was able to meet my monthly expenses´ before lung cancer diagnosis (see Table 4)

8th LuCE REPORT ON LUNG CANCER | 28 | Lung Cancer Europe (LuCE)


As Figure 8 shows, the severity of lung cancer financial toxicity is so high that 45.7% of
participants (42.0% of patients and 54.9% of caregivers) have had difficulties paying
expenses associated with lung cancer.

According to people who reported these problems (n=522), house expenses (49.4%) and
travel costs to hospitals (39.8%) were the most difficult expenses to pay. The greatest
difference between people with lung cancer and caregivers was related to hospital and
medical bills: caregivers found them much more difficult to pay than patients (46.6% vs.
27.9%).

Have you had difficulties paying for expenses related to lung cancer?
(n = 818 people with LC / n = 324 caregivers)

House expenses: 49.4%


(52.3% patients vs. 43.8% caregivers)
NO
Travel costs to hospital: 39.8%
(37.2% patients vs. 44.9% caregivers)
54.3%

Hospital and medical bills: 34.3%


(27.9% patients vs. 46.6% caregivers) YES
45.7%
House: rent / mortgage: 31.6%
(35.5% patients vs. 24.2% caregivers)

Healthcare expenses: 27.4% More difficulties reported by caregivers:


(24.4% patients vs. 33.1% caregivers) 42.0% people with LC vs. 54.9% caregivers

FIGURE 8. Difficulties paying for lung cancer expenses.

As shown in Table 4, the level of perceived financial distress doubled


Lung cancer after the lung cancer diagnosis. The percentage of people that did
is a risk factor
not feel in control of their finances increased from 15.8% (before
of financial
distress diagnosis) to 36.9% (at the time of completing this survey).

Similarly, almost half of respondents (46.8%) reported being


financially stressed, almost 20 points higher than before diagnosis.
It is startling to find that around 3 out of 10 participants (28.6%) reported not being able
to meet their monthly expenses (compared to 14.5% before diagnosis).

8th LuCE REPORT ON LUNG CANCER | 29 | Lung Cancer Europe (LuCE)


Household financial situation: vulnerability
(n = 992 participants: both people with LC and caregivers)

Before diagnosis After diagnosis

Not in control of my financial situation 15.8% 36.9%

Financially stressed 27.7% 46.8%

Not able to meet monthly expenses 14.5% 28.6%

TABLE 4. Household financial situation before and after diagnosis.

Cancer costs and economic burdens impact patients and families


64.7% reported
sacrifices such and force them to make sacrifices. The direct and indirect costs
as reducing of lung cancer cause financial instability for many people, leading
expenses to pay
for expenses of to difficulties in affording necessities and daily expenses such as
lung cancer care clothes, travel, and home utilities13.

Most respondents (64.7%) had been forced to reduce their household expenses to deal
with expenses after their lung cancer diagnosis. People surveyed reported life changes to
adapt to the situation such as cutting down leisure activity (47.6%). This was more often
reported by caregivers than patients (54.0% vs. 45.1%). Additionally, around 1 out of 3
participants also mentioned that they needed to change plans (37.0%) and reduce basic
spending, like clothes, education, or food (36.8%).

Have you made any of the following financial adjustments to reduce your
household expenses after the lung cancer diagnosis?
(n = 823 people with LC / n = 324 caregivers)

ALL PEOPLE WITH


CAREGIVERS
PARTICIPANTS LUNG CANCER

Forgo or reduce spending for leisure activities


47.6% 45.1% 54.0%
(travels, hobbies, etc.)

Change in plans (business opportunities,


37.0% 35.7% 40.1%
retirement, property purchase, car change, etc.)

Forgo or reduce basic spending (clothes, food,


36.8% 34.4% 42.9%
education, etc.)

Skip bill payments 12.4% 11.3% 15.1%

TABLE 5. Financial adjustments to reduce expenses.

8th LuCE REPORT ON LUNG CANCER | 30 | Lung Cancer Europe (LuCE)


I had to reduce my expenses. I only do a few things to maintain and improve my psyche
and physique. I have given up e.g., magazines, singing in a choir, going to the hairdresser,
visiting friends, buying Christmas and birthday presents, opera, concerts, theatre, etc.
(Patient from Finland)

I moved to a smaller and cheaper apartment. Because of the limited financial resources,
all social life has been left out. I can’t afford anything or going anywhere on vacation. I
can’t participate in any social activities with friends due to lack of money.
(Patient from Finland)

I went back to live with my mother. This allowed me to be in balance with my monthly
expenses. My income is very low with sick leave. (Patient from France)

Financial adjustment also included strategies to cashing in and having additional


resources to deal with difficulties. Over half (52.8%) of participants proactively took
steps to increase their household liquidity to cover expenses related to lung cancer.

In order to mitigate the financial burden, 22.6% utilised savings,


52.8% had
17.9% borrowed money and 14.7% sold possessions. These
made financial
adjustments coping behaviours to finance expenses or manage daily living costs
after the potentially leave people in a precarious financial position, thus
lung cancer
diagnosis contributing to their socioeconomic instability and increase financial
vulnerability.

Have you made any of the following financial adjustments after the lung
cancer diagnosis? (n = 796 people with LC / n = 312 caregivers)

ALL PEOPLE WITH


CAREGIVERS
PARTICIPANTS LUNG CANCER

Withdraw money from retirement or saving


22.6% 22.7% 22.1%
funds

Borrow money 17.9% 16.5% 21.5%

Sell assets or possessions 14.7% 14.2% 16.0%

Early return to work 8.8% 10.9% 3.2%

Other 7.2% 6.4% 9.3%

Find a second job 4.3% 2.9% 8.0%

TABLE 6. Financial adjustments to increase household liquidity.

8th LuCE REPORT ON LUNG CANCER | 31 | Lung Cancer Europe (LuCE)


I have the pressure to have to go back I don’t want her to worry but she
to work soon, otherwise there may is aware we are using savings.
be no further entitlement to sick pay (Caregiver from The United Kingdom)
or follow-up benefits. (Patient from
Germany)

After the diagnosis, cancer treatment We have already sold all our
may be the only destination of property, we are left without a home,
my savings. For the rest of my life. there is no way out. (Caregiver from
(Patient from Finland) Ukraine)

I had to sell my apartment. (Patient I pay substantially from savings.


from Finland) (Patient from Germany)

Costs associated with lung cancer and some financial adjustments may bring an increase
in the level of debt.

Our data shows that 1 out of 4 people surveyed stated that their debt level increased
after the lung cancer diagnosis.

According to literature, people with cancer are 2.65 times more likely to go bankrupt than
people without cancer14, and this is a risk factor for early mortality7.

Yes
Has your debt level 26.9%
increased after lung No
cancer diagnosis? 54.0%
(n = 974 participants: both Neutral
people with LC and caregivers) 19.1%

FIGURE 9. Debt level after diagnosis.

8th LuCE REPORT ON LUNG CANCER | 32 | Lung Cancer Europe (LuCE)


Financial Participating in a clinical trial offers an opportunity to access new
situation is therapeutic options, frequently associated with better outcomes15.
a barrier to
clinical trial
However, trials often involve regular travel, relocation, or interruption
participation of employment. Consequently, income is frequently associated with
trial participation16.

A total of 19.9% of people surveyed had participated (or their loved one had) in a clinical
trial. From a total of 198 people, 16.2% experienced higher financial distress because of
their participation in the trial (Figure 10). Once again, our data suggests that caregivers
experience higher economic impact.

Even if this impact affects only a minority of people, trial participation should never result
in a financial burden for patients and families. Costs related to trial participation are a
barrier and influence patient decisions17. As a result, patients with lower income are
less likely to participate in clinical trials18 . This is so relevant that the American Society
of Clinical Oncology (ASCO) made a policy statement addressing financial barriers to
patient participation in clinical trials. ASCO encouraged targeted financial support, and
transparency regarding the costs of trial involvement19.

During the clinical trial, have you experienced


higher household financial distress?
(n = 198 participants: both people with LC and caregivers)

Yes 11.8% People with LC


I don´t know 16.2% 27.8% Caregivers
7.6%

No
76.3%

FIGURE 10. Financial distress during the clinical trial.

8th LuCE REPORT ON LUNG CANCER | 33 | Lung Cancer Europe (LuCE)


I had to move to another city Extra costs for services not
and not everything was covered. covered by the national health
(Patient from Spain) service accentuated after the
trial. (Caregiver from Italy)

The trial requires me to travel to We had to pay for CT, MRI


the clinic for one day every three ourselves. Health insurance
weeks. (Patient from The United didn’t pay for it either. (Caregiver
Kingdom) from Germany)

According to our research, predictors of higher financial hardship are lack of full public
healthcare coverage, low income at baseline, caregiving, being diagnosed less than one
year ago, being a young patient and country of residence.

8th LuCE REPORT ON LUNG CANCER | 34 | Lung Cancer Europe (LuCE)


Factors associated with high financial toxicity

> 20% income to pay lung cancer High impact of financial difficulties
expenses reported

87.1% of respondents who 71.7% of respondents who


lacked a public health system lacked a public health system
that covered LC treatment that covered LC treatment
and care, use over 20% of and care, reported high
income to pay for care; and financial difficulties; and 44%
Lack of full public 45.4% of those required to of respondents required to
healthcare coverage make co-payments reported make co-payments reported
the same. the same.

(This falls to 18.1% among (This falls to 15.7% among


participants who reported having participants who reported having
a full public health system.) a full public health system.)

54.1% 53.0%
(This falls to 26.0% among (This falls to 20.0% among
Low income at
people who were able to meet people who were able to meet
baseline
their monthly expenses before their monthly expenses before
diagnosis.) diagnosis.)

36.5%
50.8%
(This falls to 18.8% among
Caregiving (This falls to 24.1% among people
people diagnosed with lung
diagnosed with lung cancer.)
cancer.)

45.1% 34.4%
Recent diagnosis (This falls to 26.2% among (This falls to 23.4% among
(less than 1 year ago) people diagnosed more than one people diagnosed more than one
year ago.) year ago.)

31.1% 30.3%
Young patients
(This falls to 19.8% among those (This falls to 17.8% among those
(less than 55)
older than 54.) older than 54.)

Country of residence See Table 8 See Table 8

TABLE 7. Factors associated with high financial toxicity.

8th LuCE REPORT ON LUNG CANCER | 35 | Lung Cancer Europe (LuCE)


Healthcare coverage and social welfare provisions vary significantly across countries
surveyed, influencing the level of financial impact of lung cancer4. In addition, the
country’s socioeconomic status contributes to economic vulnerability of patients, and
most middle-income and low-income countries demand out-of-pocket payments during
treatment20.

Data from our research suggests associations between financial hardship and country of
residence, being much higher in Eastern European countries (Table 8).

Differences of financial distress across Europe

> 20% income to pay lung cancer High impact of financial difficulties
expenses reported

Ukraine 86.7% 69.7%

Greece 56.5% 48.9%

Croatia 41.9% 31.0%

Poland 30.8% 33.3%

Finland 18.2% 24.2%

Spain 18.2% 12.2%

Italy 14.6% 6.7%

Germany 13.2% 11.0%

France 10.8% 19.5%

The Netherlands 10.6% 24.7%

United Kingdom 10.4% 15.2%

Denmark 5.9% 0.0%

TABLE 8. Financial distress: Differences across Europe.

8th LuCE REPORT ON LUNG CANCER | 36 | Lung Cancer Europe (LuCE)


3.3. WELL-BEING: Repercussions of financial stress on health

Financial difficulties are common for those diagnosed with lung cancer. Repercussions are
complex and multidimensional, and ripple out from the person with lung cancer throughout
the family. The economic consequences are over and above the direct impacts on health and
well-being from the disease itself.

Previous research has shown that there is association between higher financial stress
and worse quality of life in people impacted by cancer21. In order to explore the health
repercussions of financial stress, the following questions were only asked to those people
who reported, at least, a little bit of financial difficulties*.

Mental health 88.4% pointed out that, at least, one sphere of their lives was
and lifestyle were negatively affected by economic repercussions. The impact on daily
reported as the
most negatively lives is an additional burden to individual wellbeing. In the literature,
affected areas the impact on daily lives of financial toxicity is defined in terms of
from financial
distress psychosocial costs22.

The main repercussions reported by people surveyed were in mental health (67.5%)
and lifestyle and social activities (59.0%). Literature suggests that financial toxicity in
cancer is associated with increased psychosocial distress12 and psychological symptoms
like depression23. Emotional repercussions and financial difficulties affect the lifestyle
of people impacted by lung cancer. As Table 9 shows, almost half of participants (47.6%)
stated that they had forgone or reduced spending on leisure activities.

Have the financial difficulties negatively affected you in any of the


following areas? (n = 477 people with LC / n = 238 caregivers)

ALL PEOPLE WITH


CAREGIVERS
PARTICIPANTS LUNG CANCER

Mental health 67.5% 61.6% 79.2%

Lifestyle and social activities 59.0% 58.7% 59.8%

Social relationships 37.2% 35.2% 41.1%

Physical well-being 36.5% 34.2% 41.1%

Family 35.8% 33.1% 41.1%

Working life 29.0% 27.9% 31.4%

Spiritually 21.7% 16.6% 32.2%

TABLE 9. Impact of financial difficulties.


*
People who responded “A little bit”, “Somewhat”, “Quite a bit” or “Very much” to the question “To what extent
have you experienced difficulties as a result of lung cancer and treatments?” (Figure 5).

8th LuCE REPORT ON LUNG CANCER | 37 | Lung Cancer Europe (LuCE)


Caregivers reported higher negative impact across all domains, compared with people
with lung cancer. The greatest differences were observed in mental health (79.2% vs.
61.6%) and spirituality (32.2% vs. 16.6%).

Participants with high impact of economic repercussions rated poorer health across all
dimensions, compared with those with low financial hardship, especially on spirituality
(65.8% vs. 12.3%), physical well-being (58.8% vs. 16.9%), and family (57.6% vs. 17.6%)*.

Our research suggests that a substantial number of people impacted by lung cancer are
at high risk of financial vulnerability. This has a great impact on their well-being, fiscal
security, and overall health24. Therefore, there is a need to identify these people as early
as possible and offer multidisciplinary care and longitudinal follow-up.

Family and
future earning
Worries about financial repercussions are common in people
potential are the impacted by lung cancer with some type of economic difficulty:
main financial
91.4% experienced psychosocial repercussions (Figure 11).
concerns

The most frequent worry was related to their families (61.8%) followed by the impact on
future earning potential (51.0%). Once again, social life was identified as an important
psychosocial impact of economic difficulties and half of respondents had fewer social
relationships and activities (48.1%).

Have the financial difficulties negatively


affected you in any of the following areas?
(n = 481 people with LC / n = 236 caregivers)

People with LC Caregivers ALL PARTICIPANTS

Concern for my family 58.6% 61.8%


68.2%
Worries because of impact 53.9%
on future earning potential 45.3% 51.0%

Fewer social 47.6%


relationships and activities 49.2% 48.1%

Remorse for the 46.6%


repercussions for my family 42.5%
34.3%
Worries: not being able to 23.9% 24.0%
pay back money borrowed 24.2%
Pressure to 21.6%
return to work soon 20.5%
18.2%
Reduced eligibility 20.4%
for insurance 16.3%
8.1%

FIGURE 11. Psychosocial impact of financial difficulties.


*
Comparison between high impact (quite a bit / very much) and low impact (a little bit) of financial difficulties (Figure 5).

8th LuCE REPORT ON LUNG CANCER | 38 | Lung Cancer Europe (LuCE)


Becoming financially You have to socialize so you
dependent is a psychological don’t feel alone but at the same
concern difficult to assume. time you don’t have money for it.
(Patient from France) (Caregiver from Spain)

I had to earn a living to I have less money for social


pay the bills. This makes it activities and I´m less active.
difficult to rest physically This is bringing on depression.
and mentally. (Patient from the United
(Patient from France) Kingdom)

Due to the less financial Insecurity about the future,


security, I do fewer poor psychological state,
things with family than changes in family plans.
before. (Patient from The (Caregiver from Greece)
Netherlands)

It causes increased worry It’s stressful for the entire


and panic about an family, there’s instability
already uncertain future. on every level of our life.
(Patient from the United (Caregiver from the United
Kingdom) Kingdom)

8th LuCE REPORT ON LUNG CANCER | 39 | Lung Cancer Europe (LuCE)


The financial strain of lung cancer affects the quality of life of people impacted by lung
cancer. In addition, it is worth noting that a substantial number of participants with
financial difficulties (82.1%) perceived these difficulties as a barrier to treatment,
recovery, and care. It is worrying that 54.3% of caregivers stated that the financial
situation highly impacted on these areas (by ‘quite a bit’ / ‘very much’). This data shows
that several respondents were unable to afford all the basic expenses associated with
lung cancer.

Participants pointed out different reasons to explain why their personal finances may
interfere with their care journey. Most frequent issues were: costs of treatments,
logistics, diagnosis, healthcare, supportive services, and quality of life.

To what extent do you perceive your financial situation


to impact your response to treatment, recovery or care?
(n = 485 people with LC / n = 236 caregivers)

People with LC Caregivers

31.4%
22.9%
22.5%
21.2%
20.6%

19.6%

17.4%

16.1%
16.1%
12.3%

All participants 17.9% 18.4% 20.0% 22.6% 21.1%

Not at all A little bit Somewhat Quite a bit Very much

FIGURE 12. Impact on recovery and care.

8th LuCE REPORT ON LUNG CANCER | 40 | Lung Cancer Europe (LuCE)


Treatment and medicines

The cost of targeted drugs My husband makes decisions


for the EGFR mutation is so for treatment based on not
high that I cannot afford it. impacting his family financially
(Patient from Ukraine) after he is gone. (Caregiver
from the United Kingdom)

With good finances, I would have If we didn’t pay for a private


gone to a private oncologist, and consultation, we would
he would not have delayed the never have known that we
3rd surgery. (Patient from Greece) could access compassionate
use of a medication.
(Caregiver from Spain)

The treatment has been covered I couldn’t do my treatment in


by my private insurance, but the pulmonary clinic because
it does not cover all options. the health insurance didn’t
(Patient from Spain) want to cover the journeys.
(Patient from Germany)

Logistics

I cannot afford to go to the clinic Inability to afford transportation


where the treatment is more to the rehabilitation centre.
effective. (Patient from Ukraine) (Caregiver from Greece)

I decided to treat myself in a city different from mine, which required me to


spend the night and travel, assuming a greater expense. (Patient from Spain)

Diagnosis

Free examination of CT, MRI I would have liked to do more


cannot always be done in a hurry specialised tests like molecular
(long queues up to 1-2 months). testing, but unfortunately the
(Patient from Ukraine) cost is not covered by the state.
(Patient from Greece)

8th LuCE REPORT ON LUNG CANCER | 41 | Lung Cancer Europe (LuCE)


Healthcare

The main obstacle is that I need I am unable to buy the support


to pay for oxygen, plus the cost medicines required for my treatment,
of transporting the oxygen for which there is no reimbursement.
from my home to the hospital. I can’t even afford asthma
(Patient from Greece) medication. (Patient from Finland)

To fight against side effects, it was necessary to spend a


lot of money on support drugs (Patient from Ukraine)

Supportive services

Not all the needs of a cancer patient The reduced financial capacity
are covered by public healthcare. You did not allow for good
have to look yourself for nutritionists, psychology and care in private
psychologists, additional doctors. settings. (Caregiver from Greece)
(Patient from Spain)

Lack of money for supportive treatments for recovery and processing (physical
therapy, nutritional counselling, psychotherapy). (Caregiver from Germany)

Quality of life

Increased gas and electricity I can no longer afford to move


prices meant I was unable to heat from my tiny studio flat which
my house adequately during the would impact the accessibility of
winter months leaving me cold receiving care at home. (Patient
and at risk of infection. (Patient from the United Kingdom)
from the United Kingdom)

You can’t buy enough good food, hygiene products and you don’t have
money for physical therapy, etc. (Patient from Finland)

8th LuCE REPORT ON LUNG CANCER | 42 | Lung Cancer Europe (LuCE)


People with cancer who experience considerable financial distress may alter their care to
cover expenses associated with the disease25. Physical health may even be sacrificed in
an effort to save money by making some decisions that affect adherence to treatment25 .
Some studies suggest that patients with greater economic difficulties have nearly double
the likelihood of nonadherence to cancer medication10. This is one of the reasons why
financial hardship is associated with worsened symptom burden, quality of life26, and
even hastens patient mortality27.

1 out of 4 had A total of 26.5% of all participants (with or without financial


made decisions difficulties) reported having made a decision that affected their self-
that negatively
affected self-care care or adherence to treatment due to economic reasons. Those
because of financial under economic pressure were also more likely to forego or delay
difficulties
care (70.2% vs. 10.8%)*.

Delaying or forgoing supportive services was the most frequently selected treatment
sacrifice reported (14.1 %) but financial difficulties go even further, significantly impacting
other areas of people’s treatment and medical appointments (Figure 13).

People experiencing high financial difficulties reported greater difficulties across all
domains: delaying/forgoing supportive services (19.9% vs. 5.6%), treatment or medication
(14.9% vs. 0.5%) and medical appointments (12.8% vs. 1.1%), declining seeing a specialist
(15.8 % vs. 2.7%), and skipping or discontinuing medication (7.6 % vs. 0.8%).

Have you ever made any of the following decisions because of financial
difficulties? (n = 817 people with LC / n = 320 caregivers)

People with LC Caregivers ALL PARTICIPANTS

Delaying / Forgoing 13,5%


supportive services 14.1%
15,6%
Declining seeing a specialist 8,2%
because of cost 14,1% 9.9%

Delaying / Forgoing 6,2%


treatment ormedication 11,9% 7.8%

Delaying / Forgoing medical 5,8%


appointments 6.9%
9,7%
Skipping medication doses / 4,2% 4. 7%
Discontinuation of medication 5,9%

FIGURE 13. Decisions made due to financial difficulties and its repercussions on health.

*
Comparison between high impact (quite a bit / very much) and no or low impact (not at all / a little bit) of financial
difficulties (Figure 5).

8th LuCE REPORT ON LUNG CANCER | 43 | Lung Cancer Europe (LuCE)


Due to its influence on treatment adherence and efficacy, financial toxicity should be
discussed in medical and nurse consultations at diagnosis and regularly thereafter. The
potential impact of finances may negatively affect the prognosis and quality of life.

Many survey respondents (with or without financial difficulties) stated that their personal
finances impacted their access to healthcare (Figure 14). A substantial number of people
impacted by lung cancer considered that their personal finances influenced their
access to supportive services (40.5%), early or rapid diagnosis (38.6%) and innovative
treatments or medicines (35.0%).

These barriers were reported more commonly by people experiencing high economic
repercussions than those with low or no financial difficulties, especially in relation to
access to innovative treatments (60.3% vs. 24.1%) and clinical trials (45.3% vs. 14.1%).
Healthcare and social services as well the netherlands pharmaceutical industry should
provide more assistance with this.

Access barriers due to personal finances


(n=990 participants: both people with LC and caregivers)

Supportive services Early or rapid diagnosis Innovative treatments Clinical trials


40.5% 38.6% 35.0% 23.4%

FIGURE 14. Access barriers due to personal finances.

Our research has found some differences in how people perceive their financial situation
as a barrier to accessing diagnosis, care, and treatment. Table 10 shows that caregivers
reported higher access barriers than people diagnosed with lung cancer. In addition,
the information provided in table 11 indicates that there are differences by country.
Participants from Eastern Europe reported higher barriers in the disease journey because
of economic reasons.

We need the implementation of policies designed to offset the burden of direct medical
costs, especially among people with low socio-economic status or those living in countries
with very limited access to innovative diagnostic tests and treatments.

8th LuCE REPORT ON LUNG CANCER | 44 | Lung Cancer Europe (LuCE)


Do personal finances impact patients’ access to any of the following?
(n = 711 people with LC / n = 279 caregivers)

Yes No I don´t know

Patients Caregivers Patients Caregivers Patients Caregivers

Access to supportive services 36.7% 50.0% 41.8% 30.6% 21.5% 19.4%

Access to early or rapid


31.8% 56.0% 43.1% 28.7% 25.1% 15.3%
diagnosis
Access to innovative treat-
28.7% 50.9% 47.2% 31.8% 24.1% 17.3%
ments / medicines

Access to clinical trials 19.2% 34.1% 50.4% 39.1% 30.4% 26.8%

TABLE 10. Impact of personal finances on access:


Differences between patients and caregivers.

Country breakdown of impacted services due to personal finances


(n = 711 people with LC / n = 279 caregivers)

NETHERLANDS
DENMARK

KINGDOM
GERMANY
UKRAINE

FINLAND

CROATIA
POLAND

FRANCE
GREECE

UNITED
SPAIN

ITALY
THE

Access to
supportive 58.8% 70.0% 59.0% 50.0% 28.6% 31.8% 37.5% 38.5% 20.2% 34.8% 37.3% 15.8%
services
Access
to early
63.5% 70.0% 47.4% 38.1% 44.4% 39.1% 29.3% 15.8% 29.6% 14.5% 16.4% 23.7%
or rapid
diagnosis
Access to
innovative 94.3% 40.0% 53.7% 23.4% 31.8% 20.8% 19.1% 25.6% 21.4% 13.0% 13.4% 5.3%
treatments
Access to
65.4% 50.0% 43.6% 21.9% 27.0% 9.1% 14.6% 14.3% 6.1% 11.6% 6.0% 2.6%
clinical trials

TABLE 11. Country breakdown of impacted services due to personal finances.*

*
National comparisons were performed only when there were more than 24 participants per country.

8th LuCE REPORT ON LUNG CANCER | 45 | Lung Cancer Europe (LuCE)


3.4. SUPPORT: Dealing with financial toxicity

Even when financial distress negatively affects the quality of life of people impacted by lung
cancer, there is still a lack of resources and services available to address these needs. There are
very few options, even in countries where there is economic help or extensive social coverage,
these resources are limited, often insufficient, and frequently unknown28.

Our research suggests that financial toxicity is common among people impacted by lung
cancer, and it impacts the individual and household socioeconomic stability. In fact,
only 39.5% of participants stated that there were benefits for people with cancer in
their country. It is remarkable that 4 out of 10 (39.2%) stated that financial grants or
assistance for patients were not available in their country and another 21.3% did not
know if these existed (Figure 15).

The data on benefits for caregivers is even more worrisome (Figure 16). While caregivers
also experience significant financial strain, they report a lack of access to and knowledge
about specific caregiver support, in our survey we found that only 1 out of 4 participants
(26.6%) knew about specific caregiver benefits. It is surprising to find that 46.7% of
caregivers were not aware of caregiver benefits in their countries, and a further 26.7%
reported that there was no financial support available for caregivers.

One of the issues may be that some caregivers do not see themselves as someone who
should receive help and therefore may not have considered applying for benefits29.

Are there public financial benefits Are there public financial benefits
for people diagnosed with cancer in for caregivers in your country?
your country? (n = 708 people with LC / n = 278 caregivers)
(n = 711 people with LC / n = 279 caregivers)

Yes
Yes 26.6%
No I don´t
39.5%
39.2% know
46.7%

No
I don´t know
26.7%
21.3%

FIGURE 15. Public benefits FIGURE 16. Public benefits


for people with cancer. for caregivers.

8th LuCE REPORT ON LUNG CANCER | 46 | Lung Cancer Europe (LuCE)


Only a minority A lack of public knowledge, availability or accessibility of financial
received assistance benefits led to only a minority of people impacted by lung cancer
from public
services. Main receiving monetary or material assistance from public services.
support reported Figure 17 shows that only 1 out 5 survey respondents had sought
was through loved
ones. financial support from public health (21.6%) or social services
(20.6%). It is also worth noting that those that attempted to access
financial support were not always successful: 40.8% of the people who sought help from
social services and 29.7% in healthcare services did not get the assistance they needed.

Worryingly, only 15.2% and 12.2% of participants received financial or material


support from healthcare and social services respectively. These numbers are very low
considering that 45.7% of respondents had difficulties paying for expenses related to lung
cancer, and 36.8% found it difficult to live on their household income due to the disease.

This data suggests that even when financial supports exist, accessing them is not
always feasible or they may be insufficient. Strict eligibility criteria or difficulties to
pursue the application are barriers to accessing these benefits30. Improving access to
financial support is an urgent need, as patients and families may also feel overwhelmed,
intimidated, or embarrassed about seeking benefits for illness purposes31.

Financial challenges are pushing people impacted by lung cancer to seek support in
personal and private circles. Almost 1 out of 3 participants (30.4%) had asked for
financial or other material assistance from loved ones and 13.0% had contacted private
organisations to help address their economic needs.

More help means more If you apply for something, for example
health and less spending in a PGB or mobility scooter, you have to
the medium and long term. wait months for an interview. In the end
(Patient from Spain) I bought it myself. (Caregiver from The
Netherlands)

There is not enough money even After spending 35 years a London


for basic expenses. I also have an taxi driver, I wound up with brain
elderly mother, 85 years old, who metastases so was unemployed
also needs medicines and to be overnight. I had no support financially
taken care of. My daughter and for 6 months, only survived because
son-in-law, who work, help a lot, my wife didn’t retire. No real support
but they give almost 60% of their for the self-employed. (Patient from
wages. (Patient from Ukraine) the United Kingdom)

8th LuCE REPORT ON LUNG CANCER | 47 | Lung Cancer Europe (LuCE)


Have you sought financial assistance or donations in kind (like creams,
bandages, support with transportation) from any of the following?
(n = 796 people with LC / n = 310 caregivers)

Family, partner, friends

More often sought by caregivers than by those living with lung


cancer (40.3% vs 28.2%)
30.4%
10.4% did not obtain the assistance they needed

Public healthcare support (government-funded)

Similarly sought by people with LC and caregivers


(21.7% vs. 26.6%)
21.6%
29.7% did not obtain the assistance they needed

Public social support (government-funded)

Similarly sought by people with LC and caregivers


(21.5% vs. 23.1%)
20.6%
40.8% did not obtain the assistance they needed

Private organisations: NGOs, patient associations, foundations, etc.

Similarly sought by people with LC and caregivers


(12.3% vs. 18.4%)
13.0%
25.0% did not obtain the assistance they needed

Employer / Workplace

Similarly sought by people with LC and caregivers


(10.0% vs. 14.0%)
10.2%
30.1% did not obtain the assistance they needed

Banks / Credit union

Similarly sought by people with LC and caregivers


(7.4% vs. 8.8%)
7.2%
42.5% did not obtain the assistance they needed

FIGURE 17. Financial assistance.

8th LuCE REPORT ON LUNG CANCER | 48 | Lung Cancer Europe (LuCE)


My husband takes care of us; we Medical science is advancing so
have a small child who was a baby quickly, government financial
when I was diagnosed. My husband support cannot keep up. I am
works all day at several jobs, I incurable but not receiving
took care of the baby all by myself, chemotherapy, so all forms I fill in
through the chemo and surgeries. assume I’m not that ill. (Patient from
There was no one with us. Anyway, the United Kingdom)
I solved it. So far! (Patient from
Hungary)

One of the best strategies to improve access to financial support is channelling


information through healthcare teams. Discussions between these teams and people
impacted by lung cancer can help manage potential economic effects. These discussions
may also serve to offer support services to people at high risk9.

However, a great majority of participants had never, or barely, talked about financial
concerns with their healthcare teams (Figure 18). In fact, 28.7% had ever discussed
finances, and only a small percentage (5.7%) did it frequently. According to literature,
some of the reasons for this stems from the stigma around discussing money, and the
perception that alleviating financial burden is not the duty of healthcare teams32.

Have you talked with your healthcare team about financial


issues associated with lung cancer?
(n = 799 people with LC / n = 312 caregivers)

People with LC Caregivers

ALL PARTICIPANTS

Not at all 72.6% 71.4%


68.3%
16.8%
A little bit 15.7% 16.5%

Somewhat 6.0%
8.0% 6.6%

Quite a bit 2.6% 3.2%


4.5%
2.0% 2.4%
Very much 3.5%

FIGURE 18. Talking with the healthcare team about financial issues.

8th LuCE REPORT ON LUNG CANCER | 49 | Lung Cancer Europe (LuCE)


Social workers are considered to be the most appropriate individuals equipped to handle
these conversations and offer financial education33. However, only a minority of people
(17.4%) who reported economic difficulties had ever talked with these professionals or
attended social services (Figure 19). These services were used slightly more frequently
by people with lung cancer than caregivers (19.0% vs. 14.0%)

Among those experiencing high financial Have you ever talked with a social
impact, we observe a higher proportion of worker or someone from social
access to these services (52.1%). services about your financial
situation?
Worryingly, our findings show that nearly (n = 485 people with LC / n = 235 caregivers)
half (47.9%) of those reporting high
economic impact of lung cancer were
not supported by social services or social
workers.
Yes
17.4%

Half of people with high


financial difficulties had not I don´t
been supported by social know No
workers or social services 4.3% 78.3%

FIGURE 19. Support from social


worker or social services.

Support for healthcare costs is a priority for people surveyed. Half of respondents
reported healthcare costs as the most needed area for financial support. Even in countries
with public health care systems that cover lung cancer treatment and care, the nature
and extension of public support varies widely. Of note, the countries where participants
reported a greater need for assistance were Ukraine (96.4%), Finland (81.3%), and Poland
(72.2%).

It is worth noting that caregivers prioritised access to benefits for caregivers as their
second priority. This is consistent with data obtained by the Eurobarometer survey that
explored preferences on public contributions to helping caregivers. According to the
Eurobarometer (2012), financial remuneration for caregiving is the most important
support for family caregivers34. This measure was also highly reported by participants
from Spain (44.6%) and Italy (42.9%).

8th LuCE REPORT ON LUNG CANCER | 50 | Lung Cancer Europe (LuCE)


What types of financial support do you think are needed most for people
impacted by lung cancer? (n = 714 people with LC / n = 279 caregivers)

ALL PEOPLE WITH


CAREGIVERS
PARTICIPANTS LUNG CANCER

Costs of medication and healthcare 53.0% 51.0% 58.1%

Benefits for people with disability 27.0% 29.7% 20.1%

Energy costs and utilities 26.0% 27.0% 23.3%

Transportation 25.0% 25.6% 23.3%

Concessions for caregivers 24.6% 22.0% 31.2%

Family care 16.4% 13.7% 23.3%

Home adaptation - equipment 15.7% 15.6% 16.1%

Parking 14.3% 15.6% 11.1%

Support for work reintegration 14.5% 17.0% 8.2%

Accommodation and food 10.0% 10.4% 9.0%

TABLE 12. Financial supports most needed.

If working is no longer possible, a Care for terminally ill patients. The


higher disability benefit. (Patient only solution is a private clinic that
from The Netherlands) costs huge amounts and there is no
organised palliative care
(Caregiver from Greece)

Cancer patients who are self-employed should have an annuity such that they
can live and still be able to keep the business open for a future retirement.
(Patient from Italy)

8th LuCE REPORT ON LUNG CANCER | 51 | Lung Cancer Europe (LuCE)


4. CALL TO ACTION

Screen for financial toxicity and provide


programmes to assist with costs, if financial
vulnerability is detected.

Healthcare teams should encourage discussions with people


impacted by lung cancer to help explore their financial
needs. Those affected should be directed to resources and
information which can help to reduce expenses associated
with treatment and care and to mitigate increased costs
because of the disease situation.

Increase income replacement programme


coverage for people unable to work because of
lung cancer or caregiving.

Reduction of income due to changes in employment is one


of the biggest repercussions of a lung cancer diagnosis.
Employed individuals are more likely to experience a drop
in income due to the disease. Appropriate compensation
benefits should be funded through social welfare systems by
governments and provided for those unable to work because
of lung cancer.

8th LuCE REPORT ON LUNG CANCER | 52 | Lung Cancer Europe (LuCE)


5. ACKNOWLEDGEMENT

`Alone we can do so little, together we can do so much’.


We truly appreciate this quote from Helen Keller. She was a prolific novelist, teacher and
advocate for people with disabilities, and she believed that we all must come together,
putting our differences aside, to change the world.

We are passionate about working together to drive the change needed to improve lung
cancer outcomes, and this is only possible through the support of many individuals
committed to amplifying our voices, for people impacted by lung cancer.

We want to start by giving a special thank you to the 1,161 people who completed our
survey. This is the highest number we have ever obtained. Thank you for sharing your
experiences and concerns on such a sensitive topic.

Our thanks to the LuCE members involved in this report, who reviewed the survey and
translations, and disseminated it in their countries. We are very grateful that our members
recognise the value of working together at the European level to face the challenges that
we all share.

Thank you very much to the people involved in the LuCE Report Working Group:
Anne-Marie Baird (Working Group chair), Yvonne Diaz, Sabine Hatzfeld, Merel Hennink,
Erika Pataki and Diego Villalón. Our sincere gratitude for sharing your time and experience
throughout this project.

We also want to give a special thank you to Fundación MÁS QUE IDEAS for their
continued support. This report would not have been possible without the key role they
played in bringing this to fruition.

Lastly, we would like to thank all of the organisations that provide support to LuCE.
Thank you for your commitment to people impacted by lung cancer: Amgen, AstraZeneca,
Bayer, BluePrint Medicines, Bristol Myers Squibb, Boehringer Ingelheim, Daiichi Sankyo,
Gilead, Janssen, Lilly, Merck, MSD, Novartis, NovoCure, Pfizer, Regeneron, Roche, Sanofi,
Takeda and Thermo Fisher.

8th LuCE REPORT ON LUNG CANCER | 53 | Lung Cancer Europe (LuCE)


6. LUNG CANCER EUROPE (LuCE)
Lung Cancer Europe (LuCE) is a not-for-profit umbrella organization established in 2013
to provide a platform for lung cancer patient advocacy associations and networks at a
European level.

Our vision

All Europeans (patients, families and caregivers) impacted by lung cancer will have equity
in access to optimal care so that they have the best possible outcomes and quality of life.

Our mission

LuCE is the voice of Europeans impacted by lung cancer. We collaborate with members
and other stakeholders to destigmatise the disease and ensure that those impacted by
lung cancer get the care they need to achieve the best possible outcomes. We empower
members to ensure strong and effective lung cancer patient advocacy across Europe.
Meet our team:
Board members

Anne-Marie Baird Ewelina Szmytke Marjo Forsblom


(Ireland) (Poland) (Finland)
President Vice-President Treasurer

Annette Hans Lavinia Magee Debra Montague Erika Pataki


(Germany) (United Kingdom) (United Kingdom) (Hungary)
Board member Board member Board member Board member

Executive Team

Maeve O´Sullivan Alfonso Aguarón


(Ireland) (Spain)
Executive Officer Policy Officer

Tammy Cruickshank Catriona Grant Tihany Carrillo


(Spain) (Italy) (Spain)
Senior Project Manager Senior Project Manager Administrative Assistant

8th LuCE REPORT ON LUNG CANCER | 55 | Lung Cancer Europe (LuCE)


About our members

LuCE provides a platform for organisations and individuals working for people impacted
by lung cancer. As of October 2023, there are 39 members (34 organisations and 5
individuals), representing 22 countries. We encourage you to learn more and support
LuCE and our member organisations.

www.lungcancereurope.eu/our-members

ALK Positive Deutschland Jedra


www.alkpositiv-deutschland.org jedra.toraks.hr

Patientforeningen Lungekræft Suomen Keuhkosyöpäpotilaat


www.lungekraeft.com www.syopapotilaat.fi

Suomen Syöpäpotilaat De L’air


www.syopapotilaat.fi www.assodelair.fr

Patients en Reseau/Mon
ALK Positive Deutschland
Reseau Cancer du Poumon
www.monreseau-cancerdupoumon.com www.alkpositiv-deutschland.org

8th LuCE REPORT ON LUNG CANCER | 56 | Lung Cancer Europe (LuCE)


Landesverband Baden- Württemberg für Bundesverband Selbsthilfe Lungenkrebs e.V.
Lungenkrebskranke und deren Angehörige e.V www.bundesverband-selbsthilfe-
www.lungenkrebs-bw.de lungenkrebs.de

zielGENau Fairlife Lung Cancer Care


www.zielgenau.org fairlifelcc.com

K.E.F.I. of Athens – Association Lélek-zet Egyesület


of Cancer Patients of Athens www.lelekzetegyesulet.hu
www.anticancerath.gr

Israel Lung Cancer Foundation Associazione Insieme per i pazienti di


www.ilcf.org.il Oncologia Polmonare IPOP ONLUS
www.associazione-ipop.org

European School of Oncology Women Against Lung Cancer in Europe


www.eso.net www.womenagainstlungcancer.eu

8th LuCE REPORT ON LUNG CANCER | 57 | Lung Cancer Europe (LuCE)


Dzivibas Koks Lungekreftforeningen
www.dzivibaskoks.lv www.lungekreftforeningen.no

Longkanker Nederland Stowarzyszenie Walki z Rakiem Pluca


www.longkankernederland.nl www.rakpluca.org.pl

Pulmonale Federatia Asociatiilor Bolnavilor


www.pulmonale.pt de Cancer din Romania
www.fabc.ro

Društvo onkoloških bolnikov Slovenije Asociación Española de Afectados


www.onkologija.org de Cáncer de Pulmón
www.afectadoscancerdepulmon.com

Fundación MÁS QUE IDEAS ETOP IBCSG Partners Foundation


www.fundacionmasqueideas.org www.etop.ibcsg.org

8th LuCE REPORT ON LUNG CANCER | 58 | Lung Cancer Europe (LuCE)


Leben mit Lungenkrebs Lungcancerförening
www.leben-mit-lungenkrebs.ch www.lungcancerforeningen.se

ALK+ International ALK Positive UK


www.alkinternational.org www.alkpositive.org.uk

Lung Cancer Nursing UK (LCNUK) Athena Women against Cancer


www.lcnuk.org www.athena-wac.com

Individual members:

Nicoleta Mitrea Anne-Marie Baird

Regine Deniel Ihlen Ewelina Szmytke

Tommy Björk

8th LuCE REPORT ON LUNG CANCER | 59 | Lung Cancer Europe (LuCE)


7. ANNEX I. Detailed breakdown of
participant characteristics
PARTICIPANT DISTRIBUTION
(n = 834 patients / n = 327 caregivers)

Person caring for someone


with lung cancer
28.2%

Person diagnosed
with lung cancer
71.8%

FIGURE 20. Participant distribution.

GENDER
(n = 834 patients / 327 caregivers). ALL PARTICIPANTS
PEOPLE WITH
CAREGIVERS
LUNG CANCER

Women 76.5% 75.8% 78.3%

Men 22.7% 23.4% 21.1%

Non-binary 0.1% 0.1% 0.0%

Prefer not to say 0.7% 0.7% 0.6%

TABLE 13. Gender.

AGE
(n = 833 patients / n = 327 caregivers)
39,0%

People with LC Caregivers


26,0%

25,9%
24,2%

21,4%

19,3%
15,3%
8,9%

8,9%

4,3%
3,1%
2,4%
1,2%
0,1%

24 or 25 to 34 35 to 44 45 to 54 55 to 64 65 to 74 75 or older
younger

FIGURE 21. Age.

8th LuCE REPORT ON LUNG CANCER | 60 | Lung Cancer Europe (LuCE)


WORK SITUATION AT THE TIME OF DIAGNOSIS
(n = 832 patients / n = 327 caregivers)

People with LC Caregivers

3,3%
Others (student, homemaker, etc.) 6,4%

Unemployed 3,3%
7,7%

Unable to work 5,9%


2,8%

Self-employed 10,7%
7,3%

12,0%
Employee: part time 9,2%

Retired 20,8%
18,4%

Employee: full time 44,1%


48,3%

FIGURE 22. Work situation at diagnosis.

FINANCIAL SITUATION BEFORE DIAGNOSIS


(n = 832 patients / n = 326 caregivers)

PEOPLE WITH LC

Strongly Strongly
Disagree Neutral Agree
disagree agree

I felt in control of my financial situation 5.0% 9.1% 11.6% 37.2% 37.1%

I felt financially stressed 26.6% 30.7% 17.7% 18.9% 6.1%

I was able to meet my monthly expenses 5.8% 7.7% 7.7% 41.6% 37.3%

CAREGIVERS

Strongly Strongly
Disagree Neutral Agree
disagree agree

I felt in control of my financial situation 5.9% 14.4% 12.1% 42.3% 25.3%

I felt financially stressed 15.1% 30.3% 19.9% 26.3% 8.4%

I was able to meet my monthly expenses 5.2% 12.0% 11.3% 44.2% 27.3%

TABLE 14. Financial situation before diagnosis.

8th LuCE REPORT ON LUNG CANCER | 61 | Lung Cancer Europe (LuCE)


ACCESS TO A PUBLIC HEALTH SYSTEM THAT COVERS LUNG
CANCER TREATMENT AND CARE
(n = 832 patients / n = 327 caregivers)

ALL PEOPLE WITH


CAREGIVERS
PARTICIPANTS LUNG CANCER

Yes 69.3% 75.2% 54.1%

Partially, there are some co-payments / fees,


13.1% 10.8% 19.0%
which I can afford

Partially, there are some co-payments / fees,


7.3% 5.4% 12.2%
which I can´t afford

No 8.7% 7.0% 13.2%

Other 1.6% 1.6% 1.5%

TABLE 15. Access to a public health system.

HAVE PRIVATE HEALTH INSURANCE


(n = 832 patients / n = 327 caregivers)

ALL PEOPLE WITH


CAREGIVERS
PARTICIPANTS LUNG CANCER

Yes 31.8% 35.0% 23.6%

No 67.7% 64.5% 75.8%

I don´t know 0.5% 0.5% 0.6%

TABLE 16. Have private health insurance.

8th LuCE REPORT ON LUNG CANCER | 62 | Lung Cancer Europe (LuCE)


COUNTRY OF RESIDENCE (n = 834 patients / n = 327 caregivers)
ALL PEOPLE WITH
Country PARTICIPANTS LUNG CANCER
CAREGIVERS

1 Ukraine 147 9.0% 75 22.0% 72

2 United Kingdom 134 12.7% 106 8.6% 28

3 Greece 120 5.5% 46 22.6% 74

4 Spain 109 9.2% 77 9.8% 32

5 The Netherlands 99 10.3% 86 4.0% 13

6 Germany 97 10.0% 83 4.3% 14

7 France 82 8.9% 74 2.4% 8

8 Finland 78 7.9% 66 3.7% 12

9 Italy 69 5.8% 48 6.4% 21

10 Denmark 60 6.2% 52 2.4% 8

11 Croatia 48 3.7% 31 5.2% 17

12 Poland 24 1.6% 13 3.4% 11

13 Hungary 18 1.8% 15 0.9% 3

14 Portugal 17 1.7% 14 0.9% 3

15 Belgium 14 1.6% 13 0.3% 1

16 Slovenia 11 1.0% 8 0.9% 3

17 Switzerland 8 0.8% 7 0.3% 1

18 Sweden 6 0.7% 6 0.0% 0

19 Ireland 5 0.4% 3 0.6% 2

20 Norway 5 0.6% 5 0.0% 0

21 Austria 2 0.2% 2 0.0% 0

22 Kosovo 2 0.2% 2 0.0% 0

23 Bosnia and Herzegovina 1 0.0% 0 0.3% 1

24 Cyprus 1 0.0% 0 0.3% 1

25 Estonia 1 0.1% 1 0.0% 0

26 Israel 1 0.0% 0 0.3% 1

27 Romania 1 0.0% 0 0.3% 1

28 Serbia 1 0.1% 1 0.0% 0

TOTAL 1.161 834 327

TABLE 17. Country of residence.

8th LuCE REPORT ON LUNG CANCER | 63 | Lung Cancer Europe (LuCE)


TYPE OF LUNG CANCER
ALL PEOPLE WITH
(n = 831 patients / n= 327 caregivers) CAREGIVERS
PARTICIPANTS LUNG CANCER

Non small cell lung cancer (adenocarcinoma) 71.3% 74.1% 64.2%

Small cell lung cancer 7.9% 6.7% 11.0%

Non small cell lung cancer (squamous) 5.9% 4.8% 8.6%

Non small cell lung cancer (other subtype) 4.0% 4.0% 4.0%

Another type of lung cancer 5.3% 5.1% 5.8%

I don´t know 5.6% 5.3% 6.4%

TABLE 18. Type of lung cancer.

TUMOUR BIOMARKER
ALL PEOPLE WITH
(n = 827 patients / n = 326 caregivers) CAREGIVERS
PARTICIPANTS LUNG CANCER

ALK 22.7% 26.0% 14.4%

EGFR 16.8% 18.3% 13.2%

PD-L1 7.2% 5.9% 10.4%

ROS1 5.1% 5.8% 3.4%

KRAS 4.9% 5.4% 3.7%

BRAF 1.5% 1.5% 1.5%

MET 1.0% 0.7% 1.5%

HER2 0.6% 0.6% 0.6%

FGFR1 0.5% 0.7% 0.0%

NRG1 0.4% 0.4% 0.6%

RET 0.3% 0.4% 0.3%

NTRK 0.2% 0.0% 0.6%

CTLA-4 0.1% 0.1% 0.0%

NRAS 0.1% 0.1% 0.0%

I don´t know 20.0% 18.5% 23.9%

No mutations 15.9% 14.2% 20.3%

The tumour has not been tested 7.2% 6.4% 9.2%

Still in the process of biomarker testing 2.9% 2.1% 5.2%

TABLE 19. Biomarker status.

8th LuCE REPORT ON LUNG CANCER | 64 | Lung Cancer Europe (LuCE)


STAGE AT DIAGNOSIS
(n = 833 patients / n= 327 caregivers)

56.6%
People with LC Caregivers 50.8%

28.6%
20.2% 21.7%
17.3%

3.4% 1.5%
Localised (thorax): the Locally advanced: the Advanced (metastatic): I don´t know
cancer had not spread cancer had spread into the cancer had spread
outside of the lung tissues around the to another part of the
(StageI-II) lungs (Stage III) body (Stage IV)

FIGURE 23. Stage of lung cancer at diagnosis.

TIME FROM DIAGNOSIS


(n = 834 patients / n= 327 caregivers)

People with LC Caregivers

41.0% 39.3%
36.4%

23.4%
18.4% 18.6%
12.5%
9.8%
0.4% 0.3%

Less than 1 year 1-3 years ago 3-5 years ago More than 5 Unsure
years ago

FIGURE 24. Time from diagnosis.

8th LuCE REPORT ON LUNG CANCER | 65 | Lung Cancer Europe (LuCE)


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