Proposal:Breast Cancer in Hispanic Populations
Patients’ preferences for post-treatment breast cancer follow-up in primary care vs. secondary care: a qualitative study
Carriene Roorda MSc,* Geertruida H. de Bock PhD,† Christian Scholing MD MSc,‡ Klaas van der Meer MD PhD,§ Marjolein Y. Berger MD PhD,¶ Marlieke de Fouw MD MSc** and Annette J. Berendsen MD PhD†† *Epidemiologist, PhD candidate, Department of General Practice, Department of Epidemiology, University of Groningen,
University Medical Center Groningen,†Epidemiologist, Professor in Oncological Epidemiology, Department of Epidemiology,
University of Groningen, University Medical Center Groningen, ‡Emergency Medicine Registrar, §Professor in General Practice
Medicine, Former Head of the Department of General Practice, ¶Professor in General Practice Medicine, Head of the Depart-
ment of General Practice, **Physician in Tropical Medicine and International Health and ††Assistant Professor, Department of
General Practice, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands
Correspondence Carriene Roorda MSc
Department of General Practice
University of Groningen
University Medical Center Groningen
P.O. Box 196
9700 AD Groningen
The Netherlands
E-mail: c.roorda-lukkien@umcg.nl
Accepted for publication
22 February 2014
Keywords: breast cancer, follow-up,
interviews, patients’ preferences,
primary care, qualitative study
Abstract
Objective To explore patients’ preferences for follow-up in primary
care vs. secondary care.
Methods A cross-sectional design was employed, involving semi-
structured interviews with 70 female patients with a history of
early-stage breast cancer. Using descriptive content analysis, inter-
view transcripts were analysed independently and thematically by
two researchers.
Findings Patients expressed the strongest preference for annual vis-
its (31/68), a schedule with a decreasing frequency over time (27/
68), and follow-up > 10 years, including lifelong follow-up (20/64). The majority (56/61) preferred to receive follow-up care from the
same care provider over time, for reasons related to a personal
doctor–patient relationship and the physician’s knowledge of the patient’s history. About 75% (43/56) preferred specialist follow-up
to other follow-up models. However, primary care-based follow-up
would be accepted by 57% (39/68) provided that there is good
communication between GPs and specialists, and sufficient knowl-
edge among GPs about follow-up. Perceived benefits of primary
care-based follow-up referred to the personal nature of the GP– patient relationship and the easy access to primary care. Perceived
barriers included limited oncology knowledge and skills, time
available, motivation among GPs to provide follow-up care and
patients’ confidence with the present specialist follow-up.
Conclusions More than half of the patients were open to primary
care-based follow-up. Patients’ confidence with this follow-up
model may increase by using survivorship care plans to facilitate
communication across the primary/secondary interface and with
patients. Training GPs to improve their oncology knowledge and
skills might also increase patients’ confidence.
2192 ª 2014 John Wiley & Sons Ltd Health Expectations, 18, pp.2192–2201
doi: 10.1111/hex.12189
Introduction
Breast cancer is the most common malignancy
and the leading cause of cancer-related death in
women worldwide, accounting for 23% of new
cancer cases and 14% of cancer deaths in 2008.1
Survival of breast cancer patients has increased
in many countries as a result of early detection
through mammography and improved treat-
ment.1 This will place an increasing burden on
follow-up oncology clinics2 and primary care,
due to the demand for cancer surveillance after
completion of primary treatment and general
medical care for co-morbid conditions.3 This
highlights the need for an effective resource allo-
cation between primary care and hospital care
in the future, and possible transfer of follow-up
to the general practitioner (GP).3
Transfer of breast cancer follow-up to the
primary care setting has to be accepted by all
parties involved, including the patients. In two
cross-sectional surveys,4,5 and a discrete choice
experiment6 most patients with a history of
breast cancer preferred specialist follow-up to
GP-led follow-up. In two surveys, primary
care-based follow-up was acceptable to 5–39% of the patients7,8 and to 55 and 67% of
patients invited to participate in two random-
ized clinical trials comparing hospital and
primary care-based breast cancer follow-up.9,10
However, these studies used quantitative meth-
ods and were performed in a hospital setting.
Qualitative research can provide a deeper
understanding of the (non-)acceptance of pri-
mary care-based follow-up by patients. To our
knowledge, three qualitative studies have
explored patients’ preferences concerning pri-
mary care-based follow-up. One study reported
that Australian breast cancer survivors are will-
ing to accept an increased role for their GP in
a shared care model,11,12 while in another study
US breast cancer survivors do not think that
their primary care physician has a central role
in their survivorship care.13 An earlier study
found that UK patients prefer access to spe-
cialist services, particularly during the early
stages of follow-up.14 As health-care systems
may differ between countries worldwide, more
qualitative research concerning patients’ prefer-
ences in the issue of primary care-based follow-
up is needed. We conducted a qualitative study
among Dutch patients recruited in general
practice, in which the aim was to describe
patients’ preferences for follow-up in primary
care vs. secondary care.
Methods
Design and setting
A qualitative study was performed in the con-
text of the Dutch healthcare system, in which
primary care has played a central role for
many years. Almost all citizens are registered
with a GP, who deals with 95% of health
problems presented by patients.15 At the time
this study was conducted, the Dutch breast
cancer guidelines recommended hospital fol-
low-up for 5 years, including yearly mam-
mography. Physical examination had to be
performed every 3 months in the first year,
every 6 months in the second year and annu-
ally thereafter. After 5 years, yearly follow-up
visits and mammography appointments in the
hospital were recommended for patients
aged ≤ 60 years. Patients aged > 60 years who had undergone mastectomy had to be referred
to the national screening programme for
two-yearly mammography. For patients
aged > 60 years, and treated with breast- conserving therapy, discharge to their GP for
yearly physical examination was recommended,
combined with two-yearly mammographic fol-
low-up in the hospital.16,17
A cross-sectional design was employed,
involving semi-structured interviews with 70
female patients with a history of early-stage
breast cancer recruited from GP offices of the
Registration Network Groningen (RNG). This
general practice research network was
established in 1989 and consists of three group
practices with 17 GPs and a dynamic popula-
tion of about 30 000 patients in the city of
Groningen and the smaller towns Hoogeveen
and Sappemeer in the northern part of the
Netherlands.18 To protect patient identity, ref-
ª 2014 John Wiley & Sons Ltd Health Expectations, 18, pp.2192–2201
Patients’ preferences for breast cancer follow-up, C Roorda et al. 2193
erence numbers were assigned, and data were
stored against these numbers. According to the
Institutional Review Board of the University
Medical Center Groningen (UMCG), no
approval was needed as this non-invasive study
was not subject to the Dutch Medical Research
Involving Human Subjects Act. The principal
aim of this Act is to provide protection for
human subjects who take part in medical
research.19,20
Recruitment of patients
Using the RNG database, we searched for
patients who had a recorded code for female
breast malignancy in their record between 1998
and 2007 and who were also registered with a
participating GP at the start of the study (1
January 2009). We identified 167 of such
patients (Fig. 1). Confirmation of breast cancer
in history was obtained by going back to the
participating general practices; subsequently,
additional information about breast cancer
diagnosis, stages, treatments and recurrences
was collected for these women.18 GPs from the
RNG were asked to include patients with a
history of breast cancer who were able to par-
ticipate in the study. A total of 18 patients
were excluded from the study for the reasons
shown in Fig. 1. Patients with distant metasta-
sis at diagnosis or during follow-up were
excluded because they are expected to use more
(palliative) health care in general practice than
patients treated with curative intent. Eligible
patients (n = 149) were sent a letter, an infor- mation leaflet about the study and an informed
consent form by their own GP, to ensure that
only patients who gave their written informed
consent (n = 72) were contacted and inter- viewed by the researchers. Two patients were
excluded after interviewing because of distant
metastasis during follow-up, or missing data.
Interview guide development and data
collection
Based on a literature review and interviews
with three patients not linked to the RNG, a
semi-structured interview guide was developed.
The introductory part of this guide addressed
Breast cancer in history and registered with a participating GP at the start of study (n = 167)
Not able to participate in the study according to the GP and excluded (n = 18): 
Not registered with the GP any longer (n = 6) Dutch not first language (n = 1) Cognitive and psychological problems (n = 7) Too old (n = 1) Treatment in another country (n =1 ) Undergoing investigations for possible distant metastasis (n = 1) Still undergoing breast cancer treatment (n = 1)
Excluded from the analysis (n = 2): Distant meta
Patients…
