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.
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