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: [email protected]

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 clinics 2 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

experiment 6

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 patients

7,8 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-

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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 preferences for follow-up were not discussed (n = 1) stasis during follow-up (n = 1)

♦

Able to participate in the study according to the GP (n =149)

Excluded (n = 77): ♦ Did not respond (n = 75) ♦ Gave informed consent but declined to participate (n = 2)

Gave informed consent (n = 72) and were interviewed

Included in the analysis (n =70) Figure 1 Flow diagram of the

identification and inclusion of patients

with early-stage breast cancer.

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Patients’ preferences for breast cancer follow-up, C Roorda et al.2194

patients’ experiences with diagnosis, treatment

and follow-up to let patients ‘tell their story’ of

the breast cancer experience. The first part

focused on patients’ preferences for follow-up

in primary care vs. secondary care; The second

part focused on patients’ perceptions of the

aims of follow-up (Appendix S1). In this arti-

cle, we report on patients’ preferences for fol-

low-up. To test the interview guide, pilot

interviews were conducted with 10 patients

from the RNG. Themes related to care pro-

vider continuity emerged from these interviews

and were added to the interview guide. The

final interview guide was used in the remaining

62 interviews.

Most interviews were conducted by a final

year medical student (CS, male), who had com-

pleted his clinical training and participated in

the research project to finish his Master’s

degree. He had passed the tests related to

learning communication skills and clinical

interviewing, as these are part of the medical

school curriculum. One patient requested to be

interviewed by a female researcher (CR).

Patients were interviewed individually in their

own home (n = 69), in the general practice (n = 2) or at our Department of General Prac- tice (n = 1). Each interview lasted 30–60 min, was audio-recorded and transcribed verbatim.

Confidentiality of the interview data was dis-

cussed at the beginning of the interviews.

Patients were assured that their data would be

processed and analysed anonymously.

No relationship was established between the

researchers and the patients prior to study com-

mencement. Before being contacted, the patient

did not know anything about the researchers,

except for a name, occupation and the reason

for conducting the interview. This information

was provided in the letter, the information

leaflet and the informed consent form. Further-

more, the researchers briefly introduced

themselves at the beginning of the interview.

Data analysis

Descriptive statistics were used to describe

patients’ characteristics. Interview data were

coded by two researchers using descriptive

content analysis. 21

First, one researcher (MdF,

female) organized transcribed text concerning

patients’ preferences for follow-up into display

tables, as described by Miles and Huberman. 22

Next, two researchers independently reviewed

these tables and coded patients’ responses

based upon the predetermined themes in the

interview guide (Table 1). The researchers dis-

cussed any discrepancies in the findings until

consensus was reached. Summaries were writ-

ten and illustrated with quotes of patients. For

the predetermined themes, the numbers of

responses were counted. In this way, a cross-

case approach with a variable-oriented strategy

was used in the data analysis. 22,23

Data

saturation was not determined as data analysis

took place after completion of data collection.

However, after analysing the majority of the

interviews, no new themes appeared indicating

saturation.

Results

Characteristics of the included patients are

presented in Table 2. Median age at the time

of the interview was 62.6 (range 34.5–88.4) years. Median time since breast cancer

diagnosis was 7.0 (range 1.0–23.1) years. No significant differences were found between the

characteristics of the included patients (n = 70) and the non-respondents/excluded patients

(n = 79) (data not shown).

Table 1 Patients’ preferences for follow-up: predetermined themes

Discussed,

n (%)

Follow-up frequency 68 (97.1)

Follow-up duration 64 (91.4)

Care provider continuity* 61 (87.1)

Care provider: first choice 56 (80.0)

GP-led follow-up 68 (97.1)

Care provider continuity:

GP vs. specialists*

38 (54.3)

*These themes emerged from the pilot-interviews (n = 10) and were added to the interview guide after these interviews.

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Patients’ preferences for breast cancer follow-up, C Roorda et al. 2195

Follow-up frequency

Patients expressed the strongest preference for

annual visits (31/68) (Table 3). Other fre-

quently mentioned options included visits

twice a year (10/68) and a schedule with a

decreasing frequency over time (10/68). During

the interviews, 27 patients said they would

(also) like a schedule with a decreasing fre-

quency over time.

Annual visits

For all that fuss I think once a year is certainly

enough; I don’t need to have that mammogram

more often. (P21, age 65 years)

A schedule with a decreasing frequency over

time

Well, 3 months and then half a year, that scaling

down, I like that. And then after 2 years, once

every year. Yes, I think that’s good. (P06, age

86 years)

Follow-up duration

The most preferred duration of follow-up

was > 10 years, including lifelong follow-up (20/64) (Table 3). Other frequently mentioned

options were 10 years of follow-up (16/64) and

5 years of follow-up (8/64).

Over 10 years, including lifelong follow-up

The way I think about it now: maybe forever.

Only it was 5 years ago. . . and after 10 years I

might say, of course not. But that feeling, it does

gives you a bit of security, if you’re checked at

Table 2 Characteristics of the patients included in the analysis

n = 70

Age at diagnosis,

median (range), years

55.2 (27.4–83.9)

Breast cancer

T stage, n (%)

Tis/T1 43 (64.2)

T2/T3/T4 24 (35.8)

Unknown 3

Breast cancer

N stage, n (%)

N0 48 (68.6)

N+ 22 (31.4)

Unknown

Surgery, n (%)

Lumpectomy* 40 (57.1)

Mastectomy †

30 (42.9)

Systemic treatment, n (%)

None 12 (17.1)

Chemotherapy 35 (50.0)

Endocrine therapy 16 (22.9)

Chemotherapy +

endocrine therapy

7 (10.0)

Recurrent breast cancer

during follow-up, n (%)

Locoregional 3 (4.3)

Contralateral 2 (2.9)

Age at time of interview,

median (range), years

62.6 (34.5–88.4)

Time since diagnosis,

median (range), years

7.0 (1.0–23.1)

*Including patients treated with lumpectomy, with and without

radiation therapy. † Including patients treated with lumpectomy followed by

mastectomy, with and without radiation therapy.

Table 3 Patients’ preferences for follow-up: frequency and duration

n (%)

Frequency (n = 68)

< Every year 2 (2.9)

Every year 31 (45.6)

Twice a year 10 (14.7)

> Twice a year 6 (8.8)

Not more/less often

than at present

6 (8.8)

Decreasing frequency

over time*

10 (14.7)

Other 3 (4.4)

Duration (n = 64)

< 5 years 1 (1.6)

5 years 8 (12.5)

7 years 2 (3.1)

10 years 16 (23.5)

> 10 years 20 (31.3)

Lifelong 11 (17.2)

At least 5 years 3 (4.7)

Longer than at present 2 (3.1)

Duration recommended

by the specialist

2 (3.1)

No preference 2 (3.1)

Other 8 (12.5)

*Of all patients (n = 68), 27 would (also) like a schedule with a decreasing frequency over time.

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Patients’ preferences for breast cancer follow-up, C Roorda et al.2196

least once a year . . . So, as far as I’m concerned

I’d go for the expensive solution - let them go on

controlling me for a long time. . . (P33, age

57 years)

Care provider continuity

The majority of patients (56/61) preferred to

receive follow-up care from the same care pro-

vider at each visit. Most explanations for this

preference are related to a personal doctor– patient relationship (of trust) and the physi-

cians’ knowledge of the patients’ history (so

that patients do not have to present their story

over and over again). Three patients considered

a lack of care continuity as an advantage in

terms of receiving different opinions. Two oth-

ers declared that they were neutral with respect

to care provider continuity.

A personal doctor–patient relationship

Great. You build up a sort of band. If it would

be someone else every time, then I’d think: what

have I got now. They do have something on

paper, but still . . .. I wouldn’t like to keep having

a different GP. (P39, age 72 years)

Knowledge of the patients’ history

Then Doctor X was sick, and then another doc-

tor came who said: 4 years tamoxifen? Not

5 years? And then I had to explain that. . .. and

then another doctor came and then something

else was unclear . . . but because it was someone

else every time, I found that very unpleasant.

(P67, age 34 years)

Follow-up care provider: first choice

During the interviews, patients were asked

which care provider should provide their fol-

low-up. About 75% (43/56) preferred specialist

follow-up to other follow-up models, including

GP-led follow-up (4/56), nurse-led follow-up

(2/56) and follow-up alternately provided by

specialist and/or GP and/or nurse (5/56). Two

patients preferred to receive follow-up care

from someone who can best provide this care.

Specialist follow-up

Well, you could say the GP because he knows

you the best. But yes, the surgeon really knows

more about it . . .. So yes, then rather the sur-

geon. (P30, age 48 years)

GP-led follow-up

Follow-up provided by the GP would be

accepted by 57% of patients (39/68) (Table 4).

One of these patients found this follow-up

Table 4 Patients’ preferences for follow-up provided by the general practitioner (GP) (n = 68)

n (%)

Acceptance

There is a GP-patient relationship

of trust

39 (57.4)

Patient receives more personal

attention in general practice than

in the hospital

General practice is nearby

General practice is easily accessible

Provided that there is good

communication between

the GP and specialists

Provided that the GP has sufficient

knowledge about follow-up

No acceptance

GP has a broad medical knowledge 28 (41.2)

GP is not specialised/educated

in follow-up

GP has insufficient experience/

knowledge regarding follow-up

GP has too little time available/

high workload for providing

follow-up

GP is not motivated to provide

follow-up

Patient has less confidence in GP/

more confidence in specialists

Patient feels confident/is satisfied

with present hospital follow-up

GP missed breast cancer diagnosis

GP has to refer patients to the hospital

GP was not involved during

the active treatment phase

Mammography has to be

performed in the hospital

There are effective links within the hospital

Neutral 1 (1.5)

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Patients’ preferences for breast cancer follow-up, C Roorda et al. 2197

model acceptable after 5 years of hospital

follow-up. Another commented that she would

only accept follow-up provided by her own GP

(and not by other GPs). None of the characteris-

tics presented in Table 2 were significantly asso-

ciated with patients’ willingness to accept GP-

led follow-up (data not shown). Patients’

motives for accepting this follow-up model

included having a relationship of trust with the

GP, receiving more personal attention in general

practice than in the hospital, and having less

travelling/waiting time as the general practice is

nearby and easily accessible. However, good

communication between GPs and specialists and

sufficient knowledge among GPs about follow-

up, were considered essential by the patients.

Less travelling time

Well, I’d approve of that . . . As you get older,

that’s much better for us. Because it’s close by

and then you don’t have to go to the hospital

and you don’t have that dreadful waiting room.

(P58, age 70 years)

Good communication/sufficient knowledge

I find that OK, as long as he discusses everything

with the various doctors and he stays up to date.

Because in general the GP is a bit less up to date

about what’s really going on in terms of thera-

pies. (P10, age 36 years)

Follow-up provided by the GP would not be

accepted by 41% (28/68) (Table 4). One patient

felt neutral with respect to GP led follow-up.

Patients who found GP-led follow-up unaccept-

able were concerned about (limited) oncology

education, knowledge and experience among

GPs (Table 4). Furthermore, they thought that

GPs had too little time available and were not

motivated to provide follow-up care. Patients

expressed less confidence in their GP and more

confidence in specialists with respect to breast

cancer follow-up. Also, patients were satisfied

with the present hospital follow-up. Other barri-

ers to GP-led follow-up included GPs missing

breast cancer diagnosis, GPs seen as referring

agents to the hospital, no GP involvement dur-

ing the active treatment phase, mammography

appointments in the hospital and perceived

effective links within the hospital.

GPs’ limited experience

I think - the more experienced your fingers are,

the faster you can detect something . . . And a

GP has just seen someone with a runny nose,

and then I come in between with my breasts,

because there’s also a man with a sore toe wait-

ing. According to my feeling, it seems better to

have someone do this - who’s doing this every

single day. (P44, age 61 years)

Care provider continuity: GP vs. specialists

When patients could choose between follow-up

provided by their own GP vs. follow-up

provided by different specialists (lack of care

provider continuity), 55% of these patients (21/

38) would choose the first option, while 34%

(13/38) preferred the second option. In that

case, two patients would terminate follow-up.

One patient would go to another hospital for

follow-up, while another patient stated she had

no preference for either of the options.

GP-led follow-up

Yes, then rather with the GP - that’s the contact

that you still have. And also . . . the feeling that

there’s attention for you at that moment, instead

of being just a number on a letter, and someone

just gives you the message (P62, age 55 years)

Discussion

This qualitative study explored preferences for

breast cancer follow-up in primary care vs. sec-

ondary care, among female patients with a his-

tory of early-stage breast cancer recruited in

general practice. The women expressed the

strongest preference for annual visits, a schedule

with a decreasing frequency over time, and fol-

low-up > 10 years, including lifelong follow-up. The majority preferred to receive follow-up care

from the same care provider over time, for

reasons related to a personal doctor–patient relationship and the physicians’ knowledge of

ª 2014 John Wiley & Sons Ltd Health Expectations, 18, pp.2192–2201

Patients’ preferences for breast cancer follow-up, C Roorda et al.2198

the patients’ history. About 75% preferred

specialist follow-up to other follow-up models.

However, follow-up by the GP would be

accepted by 57%, provided that there is good

communication between GPs and specialists

and sufficient knowledge among GPs about

follow-up. Perceived benefits of GP-led follow-

up referred to the personal nature of the GP– patient relationship and the easy access to pri-

mary care. Perceived barriers to GP-led follow-

up 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.

In line with our results, others have also

shown that patients with a history of breast

cancer and participating in a hospital follow-

up programme strongly prefer visits once or

twice a year (depending on time since treat-

ment) and lifelong follow-up. 4,8

Before entering

hospital follow-up, most patients expect to go

back to the clinic once or twice a year, but are

uncertain as to how long they would remain in

follow-up. 24

As in our study, others also

reported the importance of care provider conti-

nuity. 7,11,12,14,25,26

Among Australian breast

cancer survivors, the main reason for prefer-

ring to receive follow-up care from the

same care provider over time was the doctor-

patient relationship developed during the active

treatment phase. 12

Our study supports earlier quantitative 4–6

and qualitative 11–13

findings that patients with a

history of breast cancer prefer specialist follow-

up to primary care-based follow-up. When

interpreting these findings, it should be kept in

mind that patients tend to prefer the most

familiar situation. 4,6

In our study, all patients

were diagnosed with breast cancer before 2008;

at that time, Dutch GPs did not play a formal

role in breast cancer follow-up care. Other stud-

ies reported that patients who already received

breast cancer follow-up or survivorship care

from their primary care physician were satisfied

with it 27–29

and did not report any disadvan-

tage. 11

Furthermore, patients’ preference for

specialist follow-up seems to be related to a

strong specialist–patient relationship developed

during the active treatment phase. 11,12

If fol-

low-up is transferred to the primary care set-

ting, formal involvement of GPs during the

active treatment phase might increase

patient’s confidence with primary care-based

follow-up.

In the present study, despite patients’ prefer-

ence for specialist follow-up, primary care-

based follow-up was acceptable to 57% of

patients, compared to 5–39% of patients in two surveys

7,8 and 55 and 67% of patients par-

ticipating in two randomized clinical trials. 9,10

Patients in our study, similar to patients in an

Australian qualitative study, 11,12

considered the

GP–patient relationship and the easy access to primary care as benefits of primary care-based

follow-up. However, good communication

between GPs and specialists and sufficient

knowledge among GPs about follow-up were

regarded as prerequisites to accept this follow-

up model. Breast cancer survivors in other

countries found deficiencies in the communica-

tion between primary care and specialist

care 12,28

and felt that written documentation or

on-going communication between their

specialists and primary care physicians would

be helpful in coordinating their care. 13

Therefore, survivorship care plans may be

useful instruments to facilitate communication

among patients and health-care providers. 30–32

Limited education, knowledge, experience,

time and motivation among GPs were per-

ceived barriers for the patients both in our

study and in three previous qualitative stud-

ies 11–14

to accept primary care-based follow-up.

Furthermore, in another qualitative study, the

majority of women receiving hospital follow-up

care (n = 15) did not contact their GP because they considered them to be too busy or to be

lacking in specialist knowledge. 26

Informing

women of the educational activities of their GP

might increase their confidence with primary

care-based follow-up. 11

Major strengths of this study are the large

sample of participants (n = 70) recruited in a community setting (general practice) and that

the sample covers the preferences for follow-up

of women (aged 34–88 years) with a history of

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Patients’ preferences for breast cancer follow-up, C Roorda et al. 2199

breast cancer and living from 1 to 23 years

after diagnosis. Trustworthiness of the findings

was enhanced by the use of verbatim

transcripts and by using two researchers to

code patients’ responses based upon the

predetermined themes in the interview guide.

Member checking (whereby participants pro-

vide feedback on the preliminary analysis) was

not performed as we considered this to be too

time-consuming for the patients. The main lim-

itation of this study concerns incomplete data

collection in the way that not all predetermined

themes in the interview guide were discussed

with all patients. As the flow of the dialogue

was mainly set by the patients, the (main)

interviewer did not strictly follow the interview

guide over time, probably due to limited

interviewing experience. The fact that predeter-

mined themes in the interview guide were not

discussed with all patients was discovered

during data analysis as the interviews were

analysed at the end, rather than in an iterative

process. As gender mediates the production

and analysis of qualitative data, 33

another limi-

tation might be that female breast cancer

patients in the present study were interviewed

by a male interviewer. However, only one

patient specifically requested to be interviewed

by a female researcher. Furthermore, tran-

scribed text showed that patients spoke freely

about their preferences for follow-up. There-

fore, we do not believe that using a male inter-

viewer seriously affected patients’ responses

concerning their preferences for follow-up.

In summary, over 50% of patients were open

to the possibility of 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/skills might also serve to improve

patients’ confidence.

Acknowledgements

The authors are grateful to the women who

gave their time to be interviewed. We thank

the general practitioners from the Registration

Network Groningen for their help during data

collection in the general practices and for the

inclusion of patients with a history of breast

cancer in this study.

Sources of Funding

This study was supported by a grant from the

Stoffels-Hornstra Foundation, Coevorden, The

Netherlands.

Conflict of Interest

No conflict of interests have been declared.

Supporting Information

Additional Supporting Information may be

found in the online version of this article: Appendix S1. Main part of the semi-

structured interview guide.

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