Abstract
Introduction: 360 Health Analysis (H360) was started in 2018 with the aim of providing a comprehensive picture of breast cancer management in Portugal. After initial evidence retrieval (Phase 1), this study (Phase 2) focused on analysing hospital organization and performance on breast cancer management from the perspective of patients, health care professionals (HCPs), and hospital decision-makers, with the aim of identifying the main difficulties experienced by health and social support structures in this setting. The final goal is to put forward a national consensus with an action plan on how to improve breast cancer management in Portugal
Methodology: Voluntary surveys were carried out to breast cancer patients, as well as interviews to HCPs and hospital decision-makers in seven Portuguese hospitals. Patients received the survey by telephone or email and data was subsequently quantitatively analysed using descriptive and comparative statistics. HCPs and hospital decision-makers were personally interviewed, and data subsequently qualitatively analysed.
Results: A total of 98 patient surveys, 22 HCP interviews, and five hospital decision-maker interviews were conducted in the seven hospitals included in the study. Most patients reported using their own vehicle or public transport to commute to and from the hospital, with a commuting time longer than 1 hour in 21% and 15% of cases, respectively. Waiting time until treatment start was longer than 1 hour in 35% of cases. In the hospital, patients’ first contact when going to treatment was mostly services’ front desk. Eighteen percent of women continued working while undergoing breast cancer treatment. HCPs from all hospitals acknowledged multidisciplinary disease management as a reality in their institutions. Both HCPs and hospital decision-makers acknowledged attending an excessive number of patients for their hospital capacity (in terms of facilities and technical or human resources), as well as long waiting times for performing complementary diagnostic exams and retrieving results.
Conclusions: This study revealed unmet needs regarding accessibility of breast cancer patients to the hospital and in their journey within the Portuguese health system. Some can potentially be addressed by hospital administrations participating in this study or through national political or legal measures.
Introduction
360 Health Analysis (H360) was started in 2018 with the aim
of providing a comprehensive picture of breast cancer management in Portugal by retrieving real-world data from Portuguese
hospitals. Phase 1 of this project consisted in a comprehensive review of the state of the art regarding clinical practice,
management, and quality of care in breast cancer in Portugal
(Coelho et al. 2020).
H360 Phase 2 intends to document how the Portuguese
health system currently performs regarding breast cancer
management, from screening and diagnosis to treatment and
follow-up. It also aims to identify the main difficulties experienced by the health system in this endeavour and put forward
an integrated multi-institutional action plan on how to improve breast cancer management in Portugal. To do so, the present
study analysed hospital organisation and performance regarding
breast cancer management from the perspective of patients,
health care professionals (HCPs; clinicians and non-clinicians),
and hospital decision-makers. The study aim was to analyse how
patients perceive their journey within the health system, from
breast cancer diagnosis to treatment and follow-up, and also
how HCPs and hospital decision-makers perceive the journey
of these patients within their institutions. Data regarding both
these aspects represents an unmet need in Portugal, as there
is a clear lack of literature and studies on the subject. European and international studies published in this area are scarce
and usually related to the process of breast cancer diagnosis
(Heisey et al. 2011; Burgess et al. 1998; Arndt et al. 2003)
Methodology
This study was approved by the Administration Boards of
participating hospitals following approval by the respective Ethics Committees and its design and conception were
of the strict responsibility of study investigators. Voluntary
surveys were carried out to breast cancer patients and faceto-face interviews to HCPs and hospital decision-makers in
Portuguese hospitals. Of 10 initially selected hospitals, three
were excluded due to successive bureaucratic and Ethic and
Data Protection Commission response delays and seven were
included, comprising general university hospitals (n=1), district
hospitals (n=3), oncology institutes (n=2), and private hospitals (n=1). Hospital institutions were anonymised to ensure
data privacy.
1. Patient surveys
Patient inclusion criteria for participating in the survey included
women (i) with breast cancer diagnosis, (ii) aged ≥18 years old,
(iii) with a first cancer diagnosis, (iv) with breast cancer diagnosis
≥6 months and ≤5 years ago, and (v) able to provide written
informed consent. No exclusion criteria were set. Sampling
was done by convenience for patients attending the Oncology
consultation, meeting study inclusion criteria, and accepting
to participate in the study. The intention was to select a 3:4
proportion of patients with early and advanced stage disease.
Based on the initial hospital sample of 10 hospitals and in
the 1.72% prevalence of breast cancer in Western Europe (Bray
et al. 2013), the estimated sample size was between 263 and
332 patients. Sample estimation was set for a bilateral test,
with 0.05 probability of type I error and 0.95 potency. G*Power®
Software was used for calculations. Based on these considerations, sample size was 300 patients. After exclusion of three
hospitals and considering the number of patients answering
the survey (n=98), study potency was set at 0.84.
Patients received the survey either by email or telephone
between 1 and 23 of June 2020. Online interviews were carried
out with Computer Assisted Web Interview (CAWI) system and
phone interviews with Computer Assisted Telephone Interview (CATI) system. Quantitative study using descriptive and
comparative statistics was subsequently performed using
SPSS® software.
2. Health care professional (HCP) interviews
To gain insights from HCPs on patients’ journey within the
health system, including main barriers and facilitators, a qualitative methodology was used, through implementation of
semi-structured interviews with presentation of a standardised case vignette.
Inclusion criteria comprised professionals (i) with direct
intervention in breast cancer care in the study hospitals (ii)
belonging to one of the following professional categories: diagnostic technician, nurse, nutritionist, operational assistant,
pharmacist, psychologist, physician, physiotherapist, social
worker, or technical assistant.
HCPs meeting inclusion criteria were randomly invited to
participate in the study on the day of study interview until
the pre-defined sample size for each hospital was reached.
Considering the number of professional categories established
in inclusion criteria, the prespecified sample size was three
HCPs per hospital, in a total of 30 HCPs. Qualitative analysis
of interview contents was subsequently performed based on
breast cancer patient journey.
3. Hospital decision-maker interviews
To retrieve the perspective of hospital decision-makers
regarding hospital procedures and performance in breast
cancer management, a qualitative methodology was used,
through implementation of semi-structured interviews.
Inclusion criteria comprised professionals (i) performing
hospital decision-maker functions (ii) in one of the following
settings: Administration Board, Management Support Unit,
Department direction, or Clinical management/direction.
Sample was prespecified at one hospital decision-makers per
hospital, in a total of 10. Qualitative analysis of interviews’
contents was subsequently carried out.
Results
1. Patient surveys
1.1 Hospital selection and patient interviews
A total of 155 patients accepted to participate and were
enrolled in the study. Of these, 98 patients were successfully contacted, either by email or telephone. The flowchart
of patient enrollment is depicted in Figure 1.
1.2 Patient socio-demographic characterisation
The median age of women included in this study was 59 (range
35−85) years old and most lived in the north of Portugal (33%)
or Lisbon (32%; Table 1). Regarding household, 44% of women
lived in households of two people, 23% of three, 13% of four
or more, and 20% of patients lived alone. A significant proportion of women (58%) were married or lived with a partner,
16% were single, 13% were divorced, and 13% were widows.
The predominant household net monthly income was ≤800€
(30%), followed by 800−1200€ (23%). Most women (81%)
had descendants (two descendants in 41% of cases and one
descendant in 40% of cases). Most women (53%) had their
breast cancer diagnosed <4 years ago and 42% ≥4 years ago.
Regarding disease stage, 68% of women had localised breast
cancer, 5% locally advanced disease, 22% metastatic disease,
and 5% were not aware of their disease stage. Socio-demographic characterisation and disease stage of the study population is further detailed in Table 1.
1.3 Commuting and hospital waiting times
The main mode of transportation to and from the hospital for
treatment purposes was patients’ own vehicle (42%), with 21%
of patients depending on ambulance transportation and 15% on public transports (Table 2).
The total commuting time to and
from the hospital was highly variable, with patients spending
between 10 minutes to 2 hours in the process (Figure 2).
Within the hospital, time spent waiting for treatment start
was also variable, with 56% of patients reporting waiting less
than 60 minutes and 26% less than 20 minutes (Figure 2).
Time spent on treatment was the most variable parameter,
in agreement with the high diversity of treatments used in
breast cancer (Figure 2). Patient commuting times and hospital
waiting times are presented in Table 3.
Most women (63%) were accompanied while going to treatment, 47% by their partners (Table 4). About 1 in every 3
women went to treatment alone.
The number of monthly treatments was highly variable,
ranging between less than 1 to 60, presumably due to diversity of breast cancer treatments. Thirty percent of women took
medication on a daily basis (Table 5). Women ≥60 years old
were those receiving the greatest number of monthly treatments, possibly due to the great incidence of hormone therapy
treatments in the elderly, which can be performed orally and
at home.
1.4 Last day of hospital treatment and number of hospital
desks visited
Patients were also asked about their experience in the last day
of treatment in the hospital. The number and type of hospital desks visited during the last day of treatment was variable,
with most patients referring having visited 1 (44%) or 2 (36%)
desks (Table 6).
The type of desks visited varied according to hospital (Figure 3).
For most patients, the first desk visited was the front desk (88%)
and the second was predominantly either the nurse station (33%)
or the clinical analysis (28%) desk. For women who visited a third
desk, this was the medical oncologist desk or the Day Hospital
treatment facility desk (28% each). Thirty-three percent of women
visited a fourth desk, mainly the front desk, the nurse station desk,
or the medical oncologist desk (33% each). Desk waiting times were
generally low (less than 10 minutes), except in the fourth desk, in
which 10 to 40 minutes of waiting time were reported (Figure 4).
1.5 Impact of treatment on professional life
A total of 18% of women with breast cancer continued to work
while receiving treatment for their disease, particularly those
with less than 60 years of age (HR 7.25, 95% CI 1.4−38.3,
p=0.020), with 40% of working women reporting having never
missed work (Table 7). Most of these women had less than 60
years of age and considered that keeping an occupation was
positive for their health. Of note, a significant proportion of
women (44%, n=43) resorted to medical leave during breast
cancer treatment, particularly women less than 60 years old
(HR 0.21, 95% CI 0.09−0.52, p=0.001), and 7% (n=3) continued
working despite being on medical leave.
2. HCP interviews
A total of 22 HCPs were interviewed (four from one hospital
and three from the remaining six hospitals), mostly women
(86.4%) and with a mean age of 40.7 years (range 27−60).
Half (50%) of participants were married and 21 (95.5%) lived
in urban areas. Regarding educational level, 4.5% (n=1) had
7−9 school years, 18.2% (n=4) had 10−12 school years, 31.8%
(n=7) had a bachelor degree, 40.9% (n=9) had a master degree,
and 4.5% (n=1) had a doctoral degree. Regarding professional
categories, 7 (31.8%) HCPs were physicians, 5 (22.7%) were
nurses, 3 (13.6%) were operational assistants, 3 (13.6%) were
pharmacists, 2 (9.1%) were technical assistants, 1 (4.5%)
was a social worker, and 1 (4.5%) was a phycologist. Twenty
(90.9%) respondents worked as HCPs and the remaining (n=2;
9.1%) mainly performed management functions. Regarding
the type of contract with the employer, 10 (47.6%) had an
unfixed-term employment contract, 7 (33.3%) had a permanent contract, and 4 (19.0%) had a fixed-term employment contract.
Concerning working schedule, 6 (84.2%) had fixed working
hours and 3 (15.8%) had rotating working hours. Six (27.3%)
respondents worked elsewhere.
2.1 Breast cancer patient journey in the health system
HCPs were asked their perception about breast cancer patients’
journey within their institutions, from disease clinical suspicion to confirmatory diagnosis, treatment, and follow-up. For
most hospitals, primary health care is the main source of
patient referral to the hospital. Patients receive information
about their diagnosis mostly from the surgeon and occasionally from the medical oncologist. Most hospitals have a multidisciplinary team working in collaboration in treatment decisions. Some hospitals accept and refer patients for medical
appointments after an initial multidisciplinary or Oncology
meeting, while others undertake the medical appointment with the surgeon or medical oncologist first and the multidisciplinary group meeting afterwards. One hospital has a dedicated Breast Cancer Clinic, where surgeons, medical oncologists, radiotherapists, and nurses work in coordination. In
another hospital, patients are referred, not only to designated
breast cancer treatment specialties, but also to Phycology
and Nutrition support after diagnosis. Breast cancer patient
journey according to hospitals from HCP perspective is detailed
in Table 8.
2.2 Main barriers and facilitators in breast cancer patient
journey
The main barriers identified by HCPs from National Health
Service (NHS) hospitals regarding breast cancer patient
journey were an excessive number of patients to the availability of technical and human resources and lack of adequate
work facilities. Long waiting times for Imaging scheduling and
respective results, analytic and pathology results, and surgery
scheduling were also commonly acknowledged barriers. Insufficient treatment seats in Day Hospital for chemotherapy and
other oncology treatments was a common concern. Shortage
of human and technical resources and proper working facilities were pointed out as main reasons for HCP’s overwork
and exhaustion and for lack of adequate response regarding
imaging, pathology, other complementary diagnostic exams,
surgery times, and cancer treatments.
The main facilitators in breast cancer patient journey
varied according to hospital. One hospital acknowledged the
presence of a multidisciplinary structure focused on breast
cancer treatment, as well as the availability of all necessary patient resources in all stages of the disease. Another
hospital denoted the good Day Hospital functioning and the availability of a software for optimising waiting times since the
first breast cancer appointment to treatment start. HCPs at
one hospital acknowledged a functional system for treatment
and appointment scheduling and a convenient and patientfriendly outpatient pharmaceutical system. HCPs at another
hospital acknowledged the availability of plenty of room in their
facilities and the benefit of double-checking analytic results.
One hospital acknowledged the importance of multidisciplinary team discussions and efficient inter-specialty communication and the good relationship between professional team
and patients. Another hospital referred its highly motivated
professionals and good working relationship, existence of a
functional Day Hospital and Nursing consultation, and the
possibility of performing non-scheduled consultations. Finally,
private sector hospital recognised the advantage of a functional insurance system and, contrarily to most NHS hospitals, prompt breast cancer diagnosis, staging, and treatment,
with short waiting times.
The main barriers and facilitators in breast cancer patient
journey according to HCPs by hospital are detailed in Table 9.
3. Hospital decision-maker interviews
From a total of 10 initial hospital decision-makers, three were
excluded for successive delays in in-hospital study approvals
and two for not answering the questionnaire. A total of
five hospital decision-makers accepted to participate and
completed the study questionnaire.
3.1 Positive aspects
The main positive aspect pointed out was the availability
of a widely available multidisciplinary disease management
structure supported by an experienced breast cancer team. All hospital decision-makers extensively considered that
their hospitals had easy and rapid access to the Oncology
center once diagnosis was established, with some also
reporting a close doctor-patient relationship and ease in
patients contacting the attending physician. One hospital
emphasised the benefit of having established treatment
protocols. One hospital stressed the ease and quickness in
making appointments for Day Hospital treatments, absence
of waiting list for Oncology consultations, and good hospital infrastructures, and another hospital emphasised the highly
motivated and work-committed doctors and HCPs at the
Oncology Department.
3.2 Aspects to improve
The main aspects referred as requiring improvement were time
until breast cancer diagnosis and staging due to difficulty in
quickly obtaining complementary diagnostic test results. Time
until treatment start, particularly surgery, was pointed out as an aspect to improve, as well as time until radiotherapy start. One
hospital acknowledged survivor follow-up and referral as aspects
requiring improvement, while another hospital stressed the need
to incorporate patient-reported outcomes in clinical assessment.
3.3 Aspects to modify
The main aspects requiring adjustments and improvement
varied according to hospital. In one hospital, decision-makers
considered that there should have a better and easier access to
medical specialties not available at the center and stressed the
need to implement oncofertility evaluation. In another hospital,
waiting times for magnetic ressonance imaging (MRI), namely
breast MRI, were a relevant concern requiring improvement.
One hospital pointed out the need for timely complementary
diagnostic method results, better and larger infrastructures,
and more HCPs, and private sector hospital referred insufficient
insurance coverage as main aspect requiring improvement.
3.4 Resource availability
Resource shortage was mentioned by all public hospitals, in
contrast with the private sector where lack of resources was
not referred.
Hospital decision-makers generally referred a lack of human,
technical, economic, and financial resources. Specifically, the
need for more nurses, non-HCPs (particularly statisticians), and
investigator study coordinators was mentioned by representatives of one hospital, who nevertheless referred having sufficient technical equipment at the institution. In this hospital,
lack of economic and financial resources, as well as need for
better working facilities and for improved and restructured
budgetary allocation to improve drug policy were also stressed.
Additionally, shortage of human and financial resources,
need for better working facilities and equipment, and need
for more human and technical resources were also emphasised by participating hospitals.
Discussion
H360 Health Analysis is a pioneer project at national level
that intents to comprehensively address aspects involved in
breast cancer management in Portugal. As far as the authors
are aware, no such study has been conducted in Portugal to
date, particularly focusing hospital logistics and accessibility by
breast cancer patients, and studies conducted in Europe and
high-income countries are infrequent and mostly centered in
primary care setting (Heisey et al. 2011; Burgess et al. 1998;
Arndt et al. 2003).
In low- and middle-income countries, several initiatives are in place to improve accessibility of breast cancer
patients to primary health care and hospitals, with the aim
of reducing disparities between these countries and highincome counterparts, and ultimately impact breast cancer
incidence and improve survival (Anderson et al. 2008). The
Breast Health Global Initiative is a program directed at lowand middle-income countries involving the synergic work
of breast cancer experts together with that of epidemiologists, health care administrators and politics, and clinical
and translation researchers. (Anderson et al. 2008; Hortobagyi 2010). Understanding implementation and following
the example of this type of program can be an example
of how to improve health care delivery to breast cancer
patients, particularly those with difficulties in hospital/
health care system access (Anderson 2010). To do so, H360 was designed as a multiphase study involving patients and
stakeholders (health care professionals and hospital decisionmakers) participating in breast cancer management.
By providing a patient- and multi-stakeholder approach, this
study retrieved relevant data for the future optimisation of
breast cancer care in Portugal.
Patient accessibility to the hospital appears to be a relevant
issue that should be improved. For instance, more than half
of women used their own vehicle or public transport as main
mode of commuting to and from the hospital, with 21% of
patients depending on ambulance transportation. Commuting
times to and from the hospital and waiting times until treatment start, although widely variable, were frequently longer
than one hour. The need to reduce commuting and waiting
times to treatment start is manifestly important, as the
number of monthly treatments ranged between less than 1
to 60 for some women (even considering that some were
performed orally and at home).
Training and humanisation of the staff involved in the
care of these patients is of uttermost importance and
should be a priority, as approximately one in every three
women reported going to treatment alone. This is even
more important regarding staff working in hospital front
desks, as they frequently represent patients’ first contact
within health structures.
Concerning professional activity, studies about employment
trends in women with breast cancer suggest that between
40% to 76% of women of working age have a job at the time
of breast cancer diagnosis (Amir and Brocky 2009; Blinder et
al. 2017; Jagsi et al. 2014; Jagsi et al. 2017), who will predictably experience difficulties in maintaining their jobs due to
the disease (Blinder et al. 2017; Jagsi et al. 2017). According
to a meta-analysis, 5.6% to 56.3% of women become unemployed after breast cancer surgery (Wang et al. 2018). Additionally, a significant proportion of women do not return to
work after cancer (Jagsi et al. 2017; Bouknight et al. 2006).
Substantial employment disruptions are particularly notorious
for patients undergoing more aggressive treatments (Jagsi et
al. 2017). Studies suggest that workplace accommodations and
a non-discriminating work environment play a central role in
returning to work (Bouknight et al. 2006). In the present study,
18% of women continued to work while undergoing breast
cancer treatment and the Portuguese legislation falls short
from protecting these women in terms of working rights, flexibility in working hours, and adjustment of working functions.
Regarding the approach to breast cancer management
of hospitals analysed in this study, HCPs acknowledge the
benefit of multidisciplinary disease management, which was
a reality in all institutions. However, HCPs and hospital decision-makers from the NHS clearly acknowledged issues to be
addressed. One of the main is the disproportionate number
of patients for their institutions’ capacity, either regarding
facilities as technical or human resources. The long waiting
times for performing complementary diagnostic exams and obtaining results and for performing treatments referred by
public hospitals are a major concern and significantly contrast
to what is reported in the private sector. Difficulties in
complementary diagnostic exams are an issue widely recognised both by HCPs and hospital decision-makers and should
be tackled as a priority in the optimisation of breast cancer
patients’ care. On the other hand, medical health professionals reported difficulties in accessing innovative cancer
therapies through the NHS. This is an important issue specifically addressed in the recently presented Europe’s Beating
Cancer Plan, which will hopefully help improve access to
innovative cancer diagnosis and treatments across Member
States (https://ec.europa.eu/commission/presscorner/detail/
en/ip_21_342).
This study has limitations that should be acknowledged.
Of ten hospitals initially selected, three were excluded due
to bureaucratic and Ethic and Data Protection Commission
response delays, with subsequent decrease in sample size.
Also, due the study’s mainly descriptive and qualitative nature,
some qualitative information, particularly provided by HCPs
and hospital decision-makers, may have been lost.
Conclusion
Issues uncovered by this study regarding patient accessibility and journey within health institutions are relevant for
the management of breast cancer patients and should be
addressed. Hospital administrations have an important role
in improving some of the aspects referred, which should also
be addressed by national policies and legislation, with the
aim of improving the quality of life and care of people living
with breast cancer in Portugal.
Conflict of Interest
None.