patient initiated follow up of breast cancer

PSYCHO-ONCOLOGY

Psycho-Oncology 11: 346–355 (2002)Published online in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.576

PATIENT INITIATED FOLLOW UPOF BREAST CANCER

LOUISE BROWNa,*, SHEILA PAYNEb and GAVIN ROYLEc

aPrimary Medical Care, University of Southampton, Aldermoor Close, Southampton, UKbTrent Palliative Care Centre, University of Sheffield, Sykes House, Little Common Lane, AbbeyLane,

Sheffield S11 9NE, UKcDepartment of Surgery, Royal South Hants Hospital, Brintons Terrace, Southampton SO14 0YG, UK

SUMMARY

This paper reports on a randomised controlled trial assessing two types of outpatient follow up for womenpreviously treated for stage 1 breast cancer now in remission. These were standard clinic follow up (n=31, age range:48–83 years) and patient initiated follow up (n=30, age range 53–87 years). The latter method involved giving thewomen written information on the signs and symptoms of recurrence and instructing them to telephone the BreastCare Nurse if they encountered any problems. The groups were compared in terms of cancer and breast cancer-specific quality of life, and psychological morbidity at recruitment, 6 months and 1 year. Satisfaction with follow upwas assessed at 6 months and 1 year. Details regarding contact with healthcare professionals were collected at 1 year.There were no major differences in quality of life and psychological morbidity between the groups although morewomen in the standard clinic group reported reassurance and being checked as advantages whereas more women inthe patient initiated follow up group reported convenience as an advantage. Patient initiated follow up is a potentialalternative to standard clinic follow up for this group of women and appears to have no adverse effects. This couldenable a cost saving to be made. Copyright # 2002 John Wiley & Sons, Ltd.

INTRODUCTION

Breast cancer accounts for approximately one infour female cancers, making it the commonestfemale cancer in Britain (Cancer Research Cam-paign, 1996). The efficient care and treatmentof breast cancer patients is a governmentpriority representing a significant proportion ofhealth service resources (Department of Health,2000).

There is much controversy over the benefit oflong-term follow up. There is evidence that mostphysical and psychological recovery is achievedwithin the first year following treatment (Ganzet al., 1996). Despite this, many studies have

identified ongoing psychological morbidity wellbeyond this time (Maguire, 1994; Luker et al.,1995).

Brada (1995) claimed that the primary reasonfor outpatient follow up must be to improvesurvival and quality of life, although there is littleevidence that this is achieved. The prognosis ofrecurrent breast cancer is seemingly independentof routine follow up visits and most recurrencesare discovered by patients themselves (Snee, 1994;Ormiston et al., 1985).

There is much qualitative evidence that routinefollow up care provides reassurance (Thomas et al.,1997; Morris et al., 1992; Pennery and Mallet,2000). Reports of high satisfaction with theappointment and reassurance reflect a strongpsychological importance associated with followup (Muss et al., 1991; GIVIO Investigators, 1994;Gulliford et al., 1997).

Alternative methods of outpatient follow upinclude nurse-led clinics (Campbell et al., 1997),telephone access to professionals (Gulliford et al.,1997), less intensive follow up (Tate et al., 1989;

Copyright # 2002 John Wiley & Sons, Ltd. Received 5 February 2001Accepted 23 July 2001

*Correspondence to: Primary Medical Care, University ofSouthampton, Aldermoor Health centre, Aldermoor Close,Southampton S016 5ST, UK. Tel.: 023-8024-1055; fax: 023-8070-1125; e-mail: [email protected].

McLaren and Wynne, 1996) and Primary Careinvolvement (Grunfeld et al., 1999).

Alternatives need to contain the same basicfacets that the routine clinic appointment delivers.Brada (1995; p. 657) suggests ‘‘personal contactcan be maintained on the phone, especially if wehave the knowledge of patients’ wishes andexpectations and the likely content of the routinefollow-up visit’’.

Tate et al. (1989) suggested delivering infor-mation on the signs and symptoms of recurr-ence to patients post-operatively so they couldmonitor themselves. They claimed that thiswould reduce the number of routine clinicappointments for asymptomatic women whowould have open access to the clinic for treatmentor reassurance.

The current study draws on aspects of previousresearch. Namely, that contact with the hospitalis minimal, is via the telephone and is not initiallywith a member of medical staff. The objectives ofthe study are to compare two types of outpa-tient follow up for women at low risk of recurrenceof breast cancer in order to determine theireffect on:

1. Quality of life.2. Psychological morbidity.3. Satisfaction with the type of outpatient follow

up received.

METHOD

Design

A randomised-controlled trial was employed toassess the benefits of two types of outpatientfollow up. These were:

1. Standard clinic follow up where the participantsattended the clinic as usual. Here, they wereexamined by a doctor and had the opportunityto ask questions.

2. Patient initiated follow up. Here they receivedwritten information on the signs and symptomsof recurrence (see Table 1). They did not attendthe routine clinic appointments and wereadvised to contact the Breast Care Nurse(BCN) by telephone if they experienced aproblem. They still received their yearly mam-mogram.

Sample

The participants were recruited from four clinicsat the Royal South Hants Hospital in South-ampton and a clinic at Lymington Hospital. Theclinics were similar in terms of the way follow upwas delivered.

The inclusion criteria for patients entering thestudy were:

* treatment for stage 1 breast cancer at least1 year before recruitment,

* no signs of recurrence at recruitment,* informed consent to participate in the study.

There was no age restriction and the onlywomen who were excluded were those deemednot to be suitable by the medical staff or BCNs atthe clinic. Common reasons were anxiety andcurrent personal problems.

Data collected

(a) Demographic details(b) Cancer-related information (see Table 2)

The above information was gained from theparticipant and their medical notes following theirinclusion into the study.

(c) Quantitative data regarding quality of lifeand psychological morbidity for the pre-vious week were collected using three ques-tionnaires at recruitment (T1), 6 months(T2) and 12 months (T3). They tookapproximately 15min to complete.

Table 1. Checklist of signs and symptoms given to participants

in the patient initiated group

Symptoms Signs

Breast pain Breast lump

Back pain, especially

both day and night

Nipple discharge

Shortness of breath Breast asymmetry

Troublesome, persistent

cough

Lumps in neck or under arms

Abdominal pain Lumps on mastectomy scars

Any other unexplained

symptoms that persist for

more than one week

Any other unexplained lumps

or physical signs that persist for

more than one week

FOLLOW UP OF BREAST CANCER 347

Copyright # 2002 John Wiley & Sons, Ltd. Psycho-Oncology 11: 346–355 (2002)

Health-related quality of life was assessed by theEuropean Organisation for Research and Treat-ment of Cancer (EORTC) QLQ-C30 and QLQ-BR23 questionnaires. The EORTC QLQ-C30 is a30-item questionnaire proven to be reliable andvalid (Aaronsen et al., 1993). Subscales consistof physical, role, cognitive, emotional, symptoms,

financial impact and social domains. The QLQ-BR23 module assesses breast cancer-specific qual-ity of life in the domains of body image, sexualfunctioning, future perspectives, physical symp-toms and side effects of treatment. This is a 23-item questionnaire with evidence of cross-culturaland clinical validity (Sprangers et al., 1996).

Items 1–7 assessed physical functioning andwere measured no or yes. Items 8–28 and 31–53were scored on a four-point scale. It was scored as1 (not at all), 2 (a little), 3 (quite a bit) and 4 (verymuch). The EORTC QLQ-C30 had 2 items whichassessed overall physical condition (item 29) andquality of life (item 30), respectively. These weremeasured on a 7-point scale ranging from 1 (verypoor) to 7 (excellent). Items from each domainwere summed to produce subscale scores.

Psychological morbidity was assessed by theHospital Anxiety and Depression Scale (Zigmondand Snaith, 1983). It consists of 14 items that aredivided into two sub-scales for anxiety anddepression. Participants are asked to rate eachitem in terms of how they have felt for the pastweek on a four-point scale. The scale representsdistress and ranges from 0 (none), 1 (a little), 2 (alot) to 3 (unbearably). The highest possible scoreon a sub-scale is 21. Scores of 7 or less indicatenon-cases, scores of 8–10 indicate borderline casesand scores of over 11 indicate the presence ofprobable anxiety and depression.

(d) A structured interview comprising of 6 itemswas designed to elicit the women’s satisfac-tion with outpatient follow up. They wereasked about the advantages and disadvan-tages of their current mode of follow up andwhether they had any suggestions forimprovement. The items were influenced bythe relevant literature and from the resultsof a pilot study investigating the attitudes of100 women to their outpatient follow up atthe same clinics conducted by the authors(Brown et al., 2000).

The interview was conducted by the researchnurse (RN) after the participant had completed thequestionnaires and lasted approximately 5–10min.It was tape recorded with the participant’spermission. Some interviews took place over thetelephone.

(e) Details of contact with health professionalsand recurrence over the duration of the

Table 2. Characteristics of participants at recruitment

Standard

clinic

n=31

Patient

initiated

n=30

Age (years)

Range 48–83 53–87

Mean 63 68

Frequency of follow up at recruitment

Every 4 months 2 2

Every 6 months 14 15

Yearly 15 13

Tumour grade

Grade I 6 9

Grade II 25 21

Type of tumour

Invasive ductal carcinoma 25 22

Other 6 8

Tumour size (m)

Range 2–50 5–43

Mean 16 19

Dcis/icis present

Number 8 6

Surgical treatment

Wide excision 9 11

Wide excision and axillary

clearance

14 6

Mastectomy 0 3

Mastectomy and axillary clearance 8 10

Medical treatment

Radiotherapy 10 5

Time since treatment at time

of recruitment

52 years 7 4

2–4 years 16 16

5 years and above 8 10

Range (months) 14–119 14–118

Mean (months) 47 50

Receiving tamoxifen at time of

recruitment

20 19

L. BROWN, S. PAYNE AND G. ROYLE348


study were gained from medical notes by theRN when participants had completed thestudy.

(f) The BCN kept records of how many womencontacted them and for what reason.

Procedure

Ethical approval for the study was gained fromSouthampton and South West Hampshire LocalResearch Ethical Committee.

The RN approached the Nurse Managers of theclinics and informed them of the study. All clinicsover a 21-week period were attended by the RN.

The RN identified eligible women from themedical notes prior to the clinic. The BCN orDoctor then asked each eligible patient if theywished to speak to the RN about the study.

Each woman received an information sheet.This described the study and explained thatrecurrences are usually detected by the patient,not at the clinic. Those who agreed completed aconsent form and were randomised into one of thetwo groups. A random number list generated bythe Medical Statistics Department at Southamp-ton General Hospital was used.

The participants completed the questionnairesin a private room in the clinic although some werein a hurry and took the questionnaires home tocomplete.

One hundred and twenty-three women were metby the RN and offered entry to the study. Twenty-three patients refused to participate before theyhad met the RN, whereas 61 refused after they hadread the information sheet. The most commonreasons for refusing were lack of time that day anda wish to remain on routine clinic follow up.

Sixty-two women (50% of those approached)agreed to be randomised. One woman did notreturn her questionnaires to the RN despite atelephone reminder. Therefore 61 women partici-pated.

All participants were contacted by telephone at6 (T2) and 12 months (T3) after recruitment. Theoverall duration in the study was one year. Theywere all seen individually at T2 by the RN whoadministered the questionnaires and structuredinterview. The same happened at T3 although 28participants received their questionnaires by postand were interviewed over the telephone due todifficulty in accessing participants. Written fieldnotes were available for those interviews.

Data analysis

All data were analysed using SPSS for Win-dows. As most of the data did not conform to anormal distribution or homogeneity of variance,non-parametric statistical tests were generallyused.

The interviews were transcribed in full or if theywere not recorded, the field notes were used. Theywere subjected to content analysis with each topicreported coded as 1 (no) and 2 (yes). Frequencydata were then collected for each group.

RESULTS

Recruitment for the study was 50% with 61women being randomised from a potential sampleof 123. There were 31 women in the standard clinicgroup and 30 in the patient initiated group.

The mean age of those who participated was65.34 years and the mean age of those who refusedwas 66.70 years. An independent samples t-testdemonstrated that there was no significant differ-ence between those who agreed and refused interms of age (t: 0.829, p: 0.409, df: 120).

The number of women in both groups hadreduced to 28 after 6 months due to two recur-rences in each group and a woman from the stand-ard clinic group opting for GP follow up.

Table 2 illustrates the characteristics of theparticipants at recruitment. They were not sig-nificantly different in terms of age (t: �1.951,p: 0.56, df: 59) or time since surgery (t: �0.371,p: 0.712, df: 59) when compared using anindependent samples t-test.

Quality of Life: EORTC Questionnaires

Mann–Whitney U tests demonstrated no sig-nificant differences between the groups at eachtime of data collection except in the arm symp-toms, breast symptoms and social function sub-scales. Descriptive statistics are displayed in Table3. The arm symptoms subscale scores were higherin the standard clinic group than the patientinitiated group at T1 (U: 272, p: 0.003) and T2 (U:271, p: 0.028). The standard clinic scores for thebreast symptoms subscale were also higher thanthose in the patient initiated group at T1 (U: 309.5,p: 0.033) and T3 (U: 257.5, p: 0.024). At TI the



Table

3.EORTC

descriptivestatistics

EORTC

QLQ-C

30

Baseline

6months

12months

Median

Min

Max

IQR

Median

Min

Max

IQR

Median

Min

Max

IQR

Functioningscales

Physical

55

55

88

11

55

55

78

21

65

55

88

21

Role

22

22

34

00

22

22

44

00

22

22

33

00

Cognitive

32

22

55

11

33

22

44

11

33

22

64

11

Emotional

65

44

12

12

43

65

44

10

11

43

65

44

15

15

3.5

3

Social

22

22

65

1.2

02

22

24

61

02

22

25

40.25

0

5

Globalquality

oflife

11

12

68

14

14

4.5

3.75

11

12

48

14

14

32.75

10

11

62

14

14

32

Symptomsscalesandindividualitem

s

Fatigue

44

33

10

83

25

43

311

72.5

15

43

38

92

1.5

Nausea&

Vomiting

22

22

34

00

22

22

35

00

22

22

43

00

Pain

11

11

33

10.25

11

11

34

11

11

11

33

11

Dyspnoea

11

11

33

10

11

11

44

11

11

11

43

11

Sleep

disturbance

11.5

11

44

11

21.5

11

44

21

21.5

11

43

11

Appetiteloss

11

11

23

00

11

11

22

00

11

11

23

00

Constipation

11

11

33

00

11

11

23

00

11

11

33

00

Diarrhoea

11

11

31

00

11

11

22

00

11

11

22

00

Financialim

pact

11

11

34

00

11

11

24

00

11

11

22

00

EORTC

QLQ-BR23

Bodyim

age

55

44

10

10

22

4.5

44

410

93

25

54

48

10

22.25

Sexualfunctioning

33

22

10

12

45.5

32

11

10

12

44

22

12

12

12

1.5

4

Arm

symptoms

3.5

33

38

62

04

33

36

62

14

33

37

62

1

Breast

symptoms

54

44

87

21

54

44

12

72

15

44

48

72

1

System

ictherapysideeff

ects

10

97

713

12

2.5

2.25

10

97

714

15

3.5

39

97

714

13

2.5

3.25

Future

perspective

21.5

11

43

01

22

11

43

11

21

11

33

01

IQR=interquartilerange;

standard

clinic;patientinitiated



median scores for both groups were the same forthe social function subscale although the standardclinic group scores were more varied and had ahigher maximum score than the patient initiatedgroup (U: 346, p: 0.023).

Kruskal–Wallis tests demonstrated that time ofdata collection had no influence on subscale scoresexcept for the arm symptoms subscale in thepatient initiated group (H: 7.461, df: 2, p: 0.24).Here the median and range of scores did notchange over time but the variety of scores wasgreater at T2 and T3.

Psychological morbidity: The HAD Scale

The vast majority of participants demonstratedno anxiety or depression at recruitment althoughoverall anxiety scores were higher than depressionscores. Three participants in the standard clinicgroup were classed as probable cases of anxiety,four as borderline and one as borderline depres-sion. In the patient initiated group one participantwas classed as being a case of probable anxiety, sixwere borderline and there was one probable caseof depression.

The groups were similar in terms of psycholo-gical morbidity. Both this similarity and theconstancy of scores over time are demonstratedin Table 4.

Mann–Whitney U tests indicated no significantdifference between the groups in terms of anxietyat T1 (U: 362, p: 0.135), T2 (U: 315.5, p: 0.207) andT3 (U: 281.5, p: 0.069). The same was true fordepression at T1 (U: 368, p: 0.147), T2 (U: 354.5,p: 0.529) and T3 (U: 321, p: 0.232).

Kruskal–Wallis tests demonstrated that time ofdata collection had no influence over scores ineach group.

There were no significant differences betweenthe groups between T1 and T3 for anxiety(t: 0.708, p: 0.482, df: 54) or depression (t: 0.664,p: 0.509, df: 54).

Satisfaction with follow up

At six months. At the 6-month visit interviewdata were collected on 24 women in the standardclinic group, and 27 in the patient initiated group.This was due to recording difficulties.

Table 5 displays the responses given to theinterview questions at 6 months and 1 year. Mostwomen when questioned during the interviewreported that they were satisfied with their out-patient care (standard clinic: 24/24, patient in-itiated: 26/28) and medical care (standard clinic:23/24, patient initiated: 27/28).

There was a significant difference between thegroups and the number of women reporting thatconvenience and reassurance were advantages oftheir type of follow up. More women in the patientinitiated group reported convenience as an advan-tage (w2: 17.354, p: 0.000, df: 1) than in thestandard clinic group, whereas more women in thestandard clinic group reported reassurance as anadvantage (w2: 27.63, p: 0.000, df: 1) than in thepatient initiated group.

At one year. Two women from the standardclinic group were not available to be interviewed.Therefore, data were collected on 26 women in the

Table 4. Descriptive statistics from the HAD scale

Standard clinic Patient initiated

n Median Range n Median Range

Anxiety

(0–21)

Time 1 31 5 0–15 30 3.5 0–15

Time 2 28 5 0–18 28 4 0–10

Time 3 28 6.5 0–16 28 4 0–12

Depression

(0–21)

Time 1 31 2 0–9 30 1 0–13

Time 2 28 2 0–7 28 1.5 0–7

Time 3 28 2 0–8 28 1 0–7



standard clinic group and 28 in the patientinitiated group.

The pattern of responses concerning conveni-ence and reassurance was maintained. Morewomen in the patient initiated group reportedconvenience as an advantage (w2: 30.79, p: 0.000,df: 1) than the standard clinic group, whereas morewomen in the standard clinic group reportedreassurance as an advantage (w2: 24.17, p: 0.000,df: 1) than the patient initiated group. Thedifference in reports of being checked as anadvantage became more pronounced at one year.More women in the standard clinic group reportedbeing checked as an advantage (w2: 8.66, p: 0.003,df: 1) than the patient initiated group.

Reassurance. Peace of mind and confidencecould be gained from visiting the clinic or fromtelephone access to the BCN.

Peace of mind, I do not mind coming at all althoughyou have checked yourself, it is a funny thing to say,but when you are checking because you have hadbreast cancer you are afraid of pressing too hard in

case you are going to find something (patient 51:standard clinic).

Well I think it gives you confidence, oh what is theword I am looking for, peace of mind you know, thatthey are still keeping an eye on you (patient 13:patient initiated).

Being checked. Being checked by a professionalwas closely linked to reassurance for some womenwho did not have confidence in their own ability todetect recurrence.

I mean you can examine yourself but you just needsomebody to confirm and say yes you haven’t foundanything or there isn’t anything going on there(patient 29: standard clinic).

Convenience. The women in the patient initiatedgroup appreciated being free from the hassle ofattending the clinic.

I used to dread going and I do not dread it anymore. . . not because I was worried about what theoutcome might be, it was a heck of a journey fromhere to Southampton and the waiting around etc.(patient 43: patient initiated).

Details of contact with health professionals

Only three phone calls to the BCN were madeduring the study (one standard clinic, two patientinitiated). Two women in the patient initiatedgroup telephoned the BCN with medicationqueries and one woman in the standard clinicgroup telephoned with a local recurrence. Therewere three referrals to hospital with breast-relatedproblems by GPs for the women in the standardclinic group and four for those in the patientinitiated group. Four women developed recur-rences, two in each group. In the standard clinicgroup one of these women contacted the BCN andwas referred to the breast clinic by her GP and onewas diagnosed at a medical outpatients clinic.Both of the women in the patient initiated groupwere referred to clinic and to the hospital,respectively, by their GPs.

Two women in the patient initiated group re-quested to receive an outpatient follow up appoint-ment at the breast clinic on completion of the study.

DISCUSSION

The results of this study indicate that patientinitiated follow up is a safe, cost-effective alter-

Table 5. Interview Responses

Standard clinic Patient initated

6 months 1 year 6 months 1 year

(n) (n) (n) (n)

Advantages

Reassurance 18 20 1 3

Convenience 1 1 16 22

Being checked 6 7 3 0

Reduced anxiety 2 2 3 2

Individualized care 1 2 1 1

Information/

communication

1 2 1 1

Staff 1 3 0 1

Time for serious cases 0 0 0 1

Disadvantages

Not being checked 0 0 5 2

Waiting time 2 3 0 0

Concern over

receiving mammo-

gram appointment

0 0 2 2

Parking/travel 2 3 1 0

Lack of continuity

with medical staff

1 0 0 0

Out on a limb 0 0 2 1

Psychological 1 2 0 1

Inconvenience 1 2 0 0



native to routine follow up for women at low riskof breast cancer recurrence. It was acceptable tothose who received it with only two womenrequesting to return to routine clinic appointmentsat the end of the study. It was reported to beconvenient and did not provoke any deteriorationin quality of life or psychological morbidity.

The study only recruited women at low risk ofrecurrence. Therefore, they were all at least 1 yearpost-treatment. This limits the generalisability ofthe results to women on long-term follow up only.Patient initiated follow up would not be recom-mended for women in the early stages of post-treatment who may perhaps have more emotionaland informational needs, that could be dealt withmore effectively at a clinic.

Half of the women who were approached by theRN refused to participate. This is in contrast to therecruitment in the Gulliford et al. (1997) study,where 93% of those approached agreed toparticipate. Perhaps this difference is due to thefact that their study offered a reduced frequency ofappointments rather than stopping them alto-gether.

As recruitment was difficult the resulting samplesize was small and although power calculationswere not performed, the study was almostcertainly underpowered. Despite this the studyhas achieved its aim to demonstrate the feasibilityof conducting such a trial. Further longitudinalresearch with larger sample sizes, determined bypower calculations, would provide more informa-tion on the utility and safety of patient initiatedfollow up. The follow up needs of women whohave received reconstructions, chemotherapy orwho have a strong genetic influence of breastcancer were not considered in this study. Largersample sizes could encompass women with a morevaried range of experiences.

A previous study conducted by the authorsindicated the reluctance of women attending theSouthampton breast clinics to try patient initiatedfollow up (Brown et al., 2000). When asked abouttheir preferences, it was found that 90 wished tocontinue with routine follow up, eight wouldaccept patient initiated follow up and two pre-ferred a combination of both types.

It is possible that those who participated in thecurrent study were inherently more compliant orpossessed more knowledge about research. Theymay have differed in terms of their attitudestowards breast cancer and research compared withthose who refused to participate. This is a

weakness of this study and other randomisedcontrolled trials. As the majority who entered thestudy were not anxious they may not have placedso much emotional importance on clinic appoint-ments.

Presentation bias may have influenced responsesto the interview questions regarding satisfaction.The RN would have been associated with theclinics as this was the recruitment setting. Thismay have led to more favourable responses.

Reassurance was a significant perceived benefitof standard clinic follow up. This is not surprisingconsidering the findings of previous studies such asMorris et al. (1992) and Thomas et al. (1997). Itseems that the reassurance and ‘peace of mind’inherent in the clinic appointment will continue tomaintain it as the preferred mode of follow up.

Not wishing to take sole responsibility for thedetection of recurrence may also influence prefer-ences for follow up. This possibility is illustratedby one of the women in the previous studyconducted by the authors in Southampton. Shecommented that ‘‘they are doing the worrying andI can get on with my life’’ (Brown et al., 2000).

Quality of life and psychological morbidity werenot adversely affected in the women in the patientinitiated group although highly anxious womenwere either excluded or declined entry into thestudy. This may have influenced the overallanxiety scores although it is encouraging thatpatient initiated follow up did not cause orexacerbate anxiety.

A minority of the women in the study diddemonstrate signs of anxiety and depression someyears after treatment. Payne and Endall (1998)suggest that if nurses performed routine screeningfor psychological morbidity they could free up thedoctors’ time and could alert them when a referralwas necessary.

It was apparent that there was no perceivabledifference between the groups in terms of contactwith the BCN and GP. Patient initiated follow updid not place any extra burden on those servicesalthough two women in the patient initiated groupchose to contact their GP rather than their BCN asinstructed. Perhaps this reflects a shift in thedelivery of care from hospital to Primary Care astime from treatment increases. The GP is the usualfirst contact for the public.

Grunfeld et al. (1996) reported that mostrecurrences present as interval events duringfollow up by a GP as well as during follow up ata hospital clinic. Patient initiated follow up would



appear to be superior in terms of economicbenefits as follow up by a GP merely shifts thetime and responsibility away from the hospital andinto Primary Care, an area of the health servicethat is already overburdened.

The question of whether recurrences would bemissed with patient initiated follow up cannot beanswered by this study. Regular mammogramsmeant that the women were still monitored. Onlylong-term observation of women receiving patientinitiated follow up would provide the evidenceabout its safety required for it to be accepted as thestandard mode of follow up for those at a low riskof recurrence.

The BCN already has the responsibility ofsupporting and advising long-term survivors ofbreast cancer. It could be argued that most womenat least one or two years post-treatment aresufficiently ‘breast aware’ and knowledgeableabout the signs and symptoms of recurrence tosafely enter patient initiated follow up.

The majority of the women in the patientinitiated group reported convenience as an advan-tage. Despite this, two of the women requested aclinic appointment at the end of the study.Although not adversely affected by one year withpatient initiated follow up, they probably contin-ued to need the reassurance of seeing a doctor at aclinic appointment.

This source of reassurance is lacking in patientinitiated follow up. Thomas et al. (1997, p. 55)expressed a wish that, ‘an awareness of the clinic’sstrengths and limitations, the long-term effects ofroutine care, and the information needs of newlydiagnosed patients, will ensure that oncologyservices in the future will aim to educate andempower patients in addition to reassuring them’.Empowering patients will allow them to acceptsome responsibility for their own health when fullrecovery has been achieved and loosen some ofthe links with the hospital. In this way they willno longer define themselves by their past illness.This is just as important a facet of care asreassurance.

Breast cancer follow up has been demonstratedto be a non-cost effective strategy which does notachieve its objectives of detecting recurrences earlyand offering a better chance of survival (Schapira,1993). The implementation of patient initiatedfollow up for those at low risk of recurrence wouldamount to a considerable cost saving. Thefinancial burden on other services appears slight,which indicates a genuine saving that could be

directed towards other aspects of breast cancercare such as detection and treatment.

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patient initiated follow up of breast cancer

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