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The role of the general practitioner in the care for patients with colorectal cancer

Brandenbarg, Daan

IMPORTANT NOTE: You are advised to consult the publisher's version (publisher's PDF) if you wish to cite from

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Publication date:

2018

Link to publication in University of Groningen/UMCG research database

Citation for published version (APA):

Brandenbarg, D. (2018). The role of the general practitioner in the care for patients with colorectal cancer.

Rijksuniversiteit Groningen.

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Primary health care use during follow-up after

curative treatment for colorectal cancer

Daan Brandenbarg, Carriene Roorda, Feikje Groenhof,

Geertruida H. de Bock, Marjolein Y. Berger, Annette J. Berendsen

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Abstract

The rising number of colorectal cancer (CRC) survivors is likely to impose a burden on health care systems. Effective resource allocation between primary and hospital care to ensure ongoing high-quality care is under discussion. Therefore it is important to understand the current role of GPs during follow-up care of CRC. This study explores the primary health care use of patients 2−6 years after CRC treatment. Annual rates of face-to-face contacts, prescribed medication and referrals were compared between CRC patients and age, gender and GP matched controls in a historical prospective study. Reasons for contacts and prescribed medication were compared based on ICPC and ATC codes, respectively. Negative binomial regression models and non-parametric test were used. Patients showed significantly more face-to-face contacts in the 2nd (63%), 3rd (32%) and 6th

(23%) year, more drug prescriptions in the 2nd, 3rd and 6th year and more referrals in the 2nd and 5th

year after diagnosis. Differences in contacts and medication were related to the alimentary tract,

blood and bloodforming organs and psychological problems. This study suggests GPs already

play a substantial role during CRC follow-up, and that there may be scope for formal services to be incorporated into the current model of GP care.

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Introduction

Colorectal cancer (CRC) in men is the third and in women the second most commonly diagnosed cancer worldwide, with an age-standardized incidence of 37.6 per 100.000 for men and 24.2 per 100.000 for women in developed countries (1). Incidence and survival rates have increased and are expected to rise in Western countries due to an ageing population, improved treatments, and earlier detection (2). According to current international guidelines follow-up care comprises of liver imaging, testing of carcinoembryonic antigen (CEA) and colonoscopy until 5 years after diagnosis (3,4). In the Netherlands this follow-up care usually takes place in a hospital setting under supervision of the surgeon/oncologist who send reports of these visits to the GP. After completion of follow-up patients are referred back to the GP. The rising number of CRC survivors is likely to increase the workload for specialty care and impose a (financial) burden on health care systems (5).

To ensure ongoing high quality cancer care, effective resource allocation between primary care and hospital care -possibly by substituting routine follow-up care to general practitioners (GPs)- is a topic of discussion (5,6). To help determine whether this substitution of follow-up care is feasible, it is important to understand the current role of the GP during follow-up of CRC survivors.

Recent studies on primary health care use of CRC survivors showed increased consultation rates during follow-up (7-9). Two studies showed that CRC survivors have a significantly increased consultation rate up to 10 years and 2−5 years after diagnosis, respectively (7,8). Another study showed that these patients have more consultations for back pain, abdominal pain, common infections, constipation and adverse drug effects during the period follow-up altogether (2−5 years after diagnosis) (9).

In addition to the aforementioned studies this study provides more detailed information about GP contacts, medication and referrals of CRC patients, allowing us to compose a more complete picture of the role of the GP during follow-up of CRC. In this study we explore the distribution of primary care contacts annually over the years of follow-up (2−6 years after diagnosis). Moreover, reasons for GP contacts are also annually explored. In health care systems with a strong primary care the GP acts as a gatekeeper and is therefore also involved in prescribing medication and referral to specialty care. Therefore this study explores not only primary care contacts, but also annual distribution of prescribed medication and referrals. Type of prescribed medication as well as patients’ characteristics associated with primary health care use are also explored.

Methods

Design and setting

Primary health care use during follow-up of CRC patients was compared to a reference population in a historical prospective study. Patients were selected from the database of the Registration Network Groningen. This GP network in the Northern part of The Netherlands routinely collects data in a dynamic cohort of approximately 30.000 patients and has shown to have good completeness and accuracy of data (10,11). Data extracted from the RNG –date and correctness

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of diagnosis colorectal cancer- was revalidated by visiting GPs’ practices and reviewing their electronic patient records and specialist reports. Available hospital records of patients were also reviewed. Additional information about type of treatment, tumor location and tumor stage was also collected during this process and entered in an anonymized database.

Patients and data collection

Patients with a recorded code for colon or rectum malignancy (D75) using the International Classification of Primary Care (ICPC) version 1 (12) in their electronic patient record (n = 331) between 1998 and 2009 determined the study population. Of 296 patients CRC diagnosis was confirmed, 71 one were not treated with curative intent and were therefore excluded. Of 296 patients CRC diagnosis was confirmed, 71 were not treated with curative intent and were therefore excluded. Of these 225 patients 11 were excluded: 10 had recurrent CRC before start of the study and 1 had another second cancer. The process of inclusion and reasons for exclusion of patients are shown in Figure 1.

ICPC code D75 in patient record between 1998 and 2009 (n = 331)

Excluded (n = 35)

● No history of CRC

History of colorectal cancer (n = 296)

Excluded (n = 71)

● Not treated with curative intent

CRC patients with curative intent (n = 225)

Excluded (n = 11)

●Recurrent CRC before start study (n = 10)

● Second cancer before start study (n = 1)

Included in matching (n = 214)

Excluded from data analysis (n = 49)

● Could not be matched to at least one

control (n = 5)

● Observation time <3 months (n = 40)

●Not enrolled during 2nd to 6th year after

diagnosis (n = 40) Total patients included in data analysis

(n = 165)

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A reference population of patients without CRC (controls) was identified from the same database. Individual CRC patients were randomly matched -if possible- to three controls, with a minimum of one control per CRC patient. Matching was performed on gender, age (+/- 1 year), per GP, and enrollment at time of patient’s diagnosis to control for differences in health care use due to gender, age, recording and prescribing by GPs (10). The annual observation time in days was calculated by counting the number of days patients and controls were registered in the database. We defined the end of initial treatment and the start of follow-up care one year after diagnosis to be sure adjuvant therapy had ended and patient entered the follow-up routine. In an earlier study

we documented health care use up to one year after diagnosis (10). Days were counted each

consecutive year 2−6 years after the date of diagnosis. The date of the referral letter by GPs was used as the date of diagnosis and as an index date for matched controls. In 44 cases (26.7%) the date of referral was unavailable and the date when the GP first mentioned CRC in the electronic patient record was used as date of diagnosis/index date. For reliability reasons those with an observation time less than 3 months (n = 4) were excluded. Finally, 165 patients and 464 controls remained. Because end-of-life care might generate atypical primary health care use, data from the last three months before the registered death (patients and controls) was not used in the analyses. Data collected was entered in an anonymized database and consisted of contacts recorded by GPs using ICPC codes, prescribed medication classified according to the Anatomical Therapeutical Chemical classification (13) and referrals.

Data analysis

Annual rates of health care use 2−6 years after diagnosis were calculated by dividing the annual number of face-to-face contacts, drug prescriptions and referrals by the annual observation time. These rates were calculated each consecutive year 2−6 years after diagnosis. Face-to-face contacts consisted of consultations in general practice and visits to patients’ homes made by GPs or other general practice workers. Due to the overdispersion in the health care data, we fitted a negative binomial regression model with a robust covariance matrix of the exchangeable type. We hereby accounted for clustering in our data due to the matching procedure. Log-transformed observation time was included in the model as an offset-variable to account for differences in observation times. We present annual Incidence Rate Ratios (IRR) and 95% confidence intervals.

Furthermore, univariate negative binomial regression was used to analyze whether patient or tumor characteristics such as tumor location (colon vs rectum) and stage (TNM stage 0,1,2 vs. 3 and 4), and received therapy (chemotherapy or radiotherapy) were associated with health care use.

Differences in reasons for face-to-face contacts and type of prescribed medication between CRC patients and controls were analyzed by calculating the number and percentage with at least one annual ICPC-code or ATC-chapter consisting of three characters. The Chi-square test was used to test the differences.

Database management was performed in Microsoft Access 2010 and statistical analyses were performed using IBM SPSS version 22.

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Table 1 Characteristics of patients with colorectal cancer (CRC) (n = 165) and the reference population (n = 464)

Patients Controls Gender, n(%)

Male 84 (50.9) 232 (50.0)

Female 81 (49.1) 232 (50.0)

Age at diagnosis, median (range), years 68.2 (28.2–91.1) 67.9 (27.6–91.6) Tumor location Colon 113 (68.5) Rectum 50 (30.3) Unknown 2 (1.2) TNM stage, n(%) 0/I/II 72 (43.6) III/IV 41 (24.9) Unknown 52 (31.5) Surgery, n(%) Yes 163 (98.8) No 1 (0.6) Unknown 1 (0.6) Radiotherapy, n(%) Yes 37 (22.4) No 117 (70.9) Unknown 29 (6.7) Chemotherapy, n(%) Yes 33 (20.0) No 117 (70.9) Unknown 15 (9.1)

Results

Characteristics of patients (n = 165) and controls (n = 464) are shown in Table 1. None of the patients’ and tumor characteristics -tumor location and stage, and received therapy − as shown in Table 1 were associated with higher rates of face-to-face contacts, prescriptions or referrals (data not shown).

Patients showed a significantly higher rate of face-to-face contacts compared to controls in the 2nd, 3rd and 6th year after diagnosis; 63%, 32%, and 23%, respectively. Patients also showed

significantly higher rates of drug prescriptions in the 2nd, 3rd and 6th year after diagnosis with

46%, 41% and 27% higher rates, respectively. Referral rates were significantly higher for patients compared to the reference population in the 2nd (67%) and in the 5th (70%) year after diagnosis

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Table 2

Annual health car

e rat es and I ncidence R at e R atios f or patients with CR C and r ef er ence population 2-6 y ears af ter diag nosis Year sinc e diag nosis 2 nd 3 rd 4 th 5 th 6 th n Ra te IRR (95% CI) n Ra te IRR (95% CI) n Ra te IRR (95%CI) n Ra te IRR (95% CI) n Ra te IRR (95% CI) Face -t o-face contac ts C ontr ols 381 4.82 1 387 4.77 1 379 4.98 1 353 4.75 1 332 4.61 1 Patients 136 7.61 1.63 (1.39–1.92)* 132 6.04 1.32 (1.09–1.60 )* 124 5.71 1.21 (0.99–1.47) 112 5.66 1.16 (0.98–1.39) 107 5.55 1.23 (1.02–1.50)* M edication Contr ols 16.95 1 17.98 1 17.19 1 17.00 1 17.01 1 Patients 25.21 1.46 (1.19–1.80)* 24.53 1.41 (1.17–1.71)* 24.53 1.17 (0.96–1.42) 20.36 1.19 (0.99–1.41) 21.99 1.27 (1.03–1.56)* Ref er rals C ontr ols 0.52 1 0.49 1 0.46 1 0.41 1 0.43 1 Patients 0.84 1.67 (1.33–2.09)* 0.54 1.12 (0.79–1.57) 0.51 1.14 (0.79–1.64) 0.69 1.70 (1.29–2.24)* 0.44 1.02 (0.69–1.51) Note: L og transf or

med annual obser

vation time was included in the model as an off

set var

iable

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Table 3

R

easons of contac

t with the GP use among patients with CR

C and r

ef

er

ence population basis on GP

-coded ICPC-codes 2-6 y ears af ter diag nosis 2 nd y ear af ter diag nosis 3 rd y ear af ter diag nosis 4 th y ear af ter diag nosis 5 th y ear af ter diag nosis 6 th y ear af ter diag nosis Con tr ols . (n = 381) Pa tien ts (n = 136) Con tr ols (n = 387) Pa tien ts (n = 132) Con tr ols (n = 379) Pa tien ts (n = 124) Con tr ols (n = 353) Pa tien ts (n = 112) Con tr ols (n = 332) Pa tien ts (n = 107) n (%) n (%) n (%) n (%) n (%) n (%) n (%) n (%) n (%) n (%) Fac e-t o-fac e c on tac t b y ICPC chapt er G

eneral and Unspecified (

A) 148 (38.8) 81 (59.6) *** 157 (40.6) 71 (53.8) * ns 124 (35.1) 56 (50.0) * 133 (40.1) 56 (52.3) * Tir edness ( A04) 13 (3.4) 16 (11.8) * ns ns ns ns A dv

erse drug eff

ec ts ( A85) 10 (2.6) 14 (10.3) ** ns ns 11 (3.1) 10 (8.9) * ns No illness ( A97) 32 (8.4) 24 (17.7) ** ns ns ns ns Blood , blood-f or ming or gans and immune mechanism (B) 29 (7.6) 24 (17.6) ** 24 (6.2) 20 (15.2) ** 27 (7.1) 21 (16.9) ** 25 (7.1) 18 (16.1) * ns Anemia (B80) 11 (2.9) 12 (8.8) * ns 10 (2.6) 12 (9.7) * ns ns Digestiv e (D) 107 (28.1) 89 (65.4) *** 111 (28.7) 72 (54.5) *** 105 (27.7) 66 (53.2) *** 89 (25.2) 62 (55.4) *** 90 (27.1) 44 (41.1) * C onstipation (D12) 25 (6.6) 23 (16.9) ** ns 23 (6.1) 16 (12.9) * 16 (4.5) 14 (12.5) * ns C olon or R ec tum malig nit y (D75) 0 (0.0) 50 (36.8) *** 0 (0.0) 28 (21.2) *** 0 (0.0) 22 (17.7) *** 0 (0.0) 23 (20.5) *** ns Ear (H) ns ns ns 47 (13.3) 32 (28.6) *** ns C ar dio vascular (K ) ns 213 (55.0) 87 (65.9) * ns ns ns M usculosk eletal (L) 152 (39.9) 73 (53.7) * ns ns ns ns Neur olog ical (N) 49 (12.9) 31 (22.8) * 40 (10.3) 23 (17.4) * ns ns ns Psy cholog ical (P) 84 (22.0) 46 (33.8) * ns 77 (20.3) 44 (35.5) ** 60 (17.0) 30 (26.8) * 65 (19.6) 31 (29.0) * Sleep distur bance (P06) 32 (8.4) 25 (18.4) ** ns ns ns ns Ur olog ical (U) 50 (13.1) 37 (27.2) *** 69 (17.8) 35 (26.5) * ns ns ns Incontinence ur ine (U04) 9 (2.4) 11 (8.1) * ns ns ns ns Social pr oblems (Z) ns ns ns 19 (5.4) 13 (11.6) * ns Not e: No sig nificant diff er ences w er e obser ved f

or the other ICPC chapt

ers (see Appendix). Chi-squar

e t

est: *p<0.05, **p<0.005, ***p<0.001, ns : non-sg

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Table 4 R easons of GP -pr escr

ibed medication among patients with CR

C and r

ef

er

ence population basis on A

TC-codes 2-6 y ears af ter diag nosis 2 nd y ear sinc e diag nosis 3 rd y ear sinc e diag nosis 4 th y ear sinc e diag nosis 5 th y ear sinc e diag nosis 6 th y ear sinc e diag nosis Con tr ols (n = 381) Pa tien ts (n = 136) Con tr ols (n = 387) Pa tien ts (n = 132) Con tr ols (n = 379) Pa tien ts (n = 124) Con tr ols (n = 353) Pa tien ts (n = 112) Con tr ols (n = 332) Pa tien ts (n = 107) n (%) n (%) n (%) n (%) n (%) n (%) n (%) n (%) n (%) n (%) Pr escr ibed medica tion b y A TC chapt er Alimentar y trac t and metabolism ( A) 139 (36.5) 77 (56.6) *** 138 (35.7) 77 (58.3) *** 145 (38.3) 69 (55.6) ** 133 (37.7) 55 (49.1) * ns Drugs f or acid r elat ed disor ders ( A02) 71 (19.4) 43 (31.6) ** ns ns ns ns Drugs f or func tional gastr oint estinal disor ders ( A03) 16 (4.2) 15 (11.0) * 11 (2.8) 12 (9.1) ** ns ns ns Laxativ es ( A06) 38 (10.0) 37 (27.2) *** 41 (10.6) 38 (28.8) *** 38 (10.0) 28 (22.6) *** 32 (9.1) 25 (22.3) ** ns Blood(f or ming or gans) (B) 114 (29.9) 61 (44.9) ** 120 (31.0) 58 (43.9) ** 124 (32.7) 55 (44.4) * ns ns Antithr ombotic agents (B01) 102 (26.8) 50 (36.8) * ns ns ns ns Antianemic pr eparations (B03) 17 (4.5) 17 (12.5) ** 21 (5.4) 14 (10.6) * 18 (4.7) 18 (14.5) ** ns ns C ar dio vascular syst em ( C ) nsd 200 (51.7) 82 (66.1) * ns ns ns D er mat olog icals (D) ns ns ns ns 74 (22.3) 34 (31.8) * G enit o-ur inar y syst em and sex hor mones ( G) ns ns ns 37 (10.5) 4 (3.6) * 36 (10.8) 4 (3.7) * Ur olog icals ( G04) ns ns ns 23 (6.5) 2 (1.8) * ns Anti-inf ec tiv es f or syst emic use ( J) ns ns ns ns 138 (41.6) 57 (53.3) * M uscosk eletal syst em (M) 93 (24.5) 51 (37.5) ** ns ns ns ns Antiinflammat or y and antir heumatic pr oduc ts (M01) 72 (18.9) 45 (33.1) ** ns ns ns ns Ner vous syst em (N) 116 (30.5) 76 (55.9) *** 125 (32.3) 66 (50.0) *** 112 (29.6) 62 (50.0) *** 103 (29.2) 50 (44.6) ** 106 (31.9) 47 (43.9) *

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Table 4 (C ontinued) 2 nd y ear sinc e diag nosis 3 rd y ear sinc e diag nosis 4 th y ear sinc e diag nosis 5 th y ear sinc e diag nosis 6 th y ear sinc e diag nosis Con tr ols (n = 381) Pa tien ts (n = 136) Con tr ols (n = 387) Pa tien ts (n = 132) Con tr ols (n = 379) Pa tien ts (n = 124) Con tr ols (n = 353) Pa tien ts (n = 112) Con tr ols (n = 332) Pa tien ts (n = 107) n (%) n (%) n (%) n (%) n (%) n (%) n (%) n (%) n (%) n (%) Analgesics (N02) 48 (12.6) 37 (27.5) *** 45 (11.6) 28 (21.2) * 40 (10.6) 25 (20.2) * ns ns Psy choleptics (N05) 75 (19.7) 49 (36.0) *** ns 71 (18.7) 34 (27.4) * ns 57 (17.2) 32 (29.9) * O ther ner vous syst em drug (N07) 16 (4.2) 13 (9.6) * ns ns ns ns Respirat or y Syst em (R) ns ns ns 75 (21.2) 37 (33.0) * 64 (19.3) 34 (31.8) * Not e: No sig nificant diff er ences w er e obser ved f or the other A TC chapt

ers (see Appendix). Chi-squar

e t

est: *p<0.05, **p<0.005, ***p<0.001, ns: non-sig

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For the entire study-period (2−6 years after diagnosis) significantly more patients contacted their GP for digestive reasons (e.g. constipation; Table 3). Contacts coded as psychological (e.g. sleep disturbance), general and unspecified (e.g. tiredness and adverse drug effects), and blood or blood forming organs (e.g. anemia) , were significantly more frequent in CRC patients except in the 2nd, 4th, and 6th year, respectively. Neurological , Urological, Musculoskeletal and Cardiovascular

reasons differed between patients and reference population only in the 2nd and/or 3rd year after

diagnosis.

During the entire study period, significantly more patients were prescribed medication for the nervous system, mainly analgesics and psycholeptics (especially benzodiazepines; Table 4). In the 2nd to 5th year after diagnosis drugs for the alimentary tract (e.g. laxatives) were prescribed to

a greater percentage of patients. Drugs for the blood and bloodforming organs (e.g. antianemic preparations) were prescribed to significantly more patients in the 2nd to 4th year after diagnosis. In

the 5th and 6th year after diagnosis significantly more CRC patients were prescribed drugs for the

respiratory system and in the 6th year after diagnosis more patients received anti-infectives and

dermatological medication.

Discussion

This study explored the primary health care use of patients during follow-up after curative CRC treatment. Patients showed significantly more face-to-face contacts in the 2nd, 3rd and 6th year

after diagnosis, more drug prescriptions in the 2nd, 3rd and 6th year after diagnosis and more referrals in the 2nd and 5th year after diagnosis. Contacts and prescribed medication were related

to the alimentary tract, blood and bloodforming organs and psychological problems. None of the patient or tumor characteristics were associated with higher rates of health care use.

Strengths and limitations

A major strength of this study is the use of a prospective primary care database. The presentation of health care problems and prescriptions were recorded by GPs using a standardized registration protocol, reducing the risk of recall or non-response bias compared to patient-reported data

(14). The likelihood that the data concerning CRC diagnosis was correctly recorded by GPs was increased by revalidating the data with specialist letters in GP practices and hospital records. Moreover, this provided detailed information about type of treatment, tumor location and tumor stage.

All Dutch inhabitants are registered with a GP. The data collected by the RNG are comparable to the Dutch population, having slightly more women and adults aged 25−44 (15). Nevertheless, we cannot rule out the possibility that the population of the RNG differs from the Dutch population, limiting the generalizability of our study. Another limitation of this study is the relatively small number of patients limiting the statistical power to find differences between sublevels of ICPC and ATC codes. The design of the study limits statements about causality of the findings presented. The date of referral by the GP might not exactly represent the date of diagnosis of CRC patients due to delays between referral and diagnosis. However, because the analysis of health care use

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was at least one year after diagnosis we do not think this limits our study. Moreover, a substantial part of unavailable dates of referral are attributable to the fact that these patients were referred through secondary care, or were diagnosed through emergency presentation.

Comparison with existing literature

Earlier studies on primary health care use of CRC survivors showed increased consultation rates during follow-up (7-9). A British study showed CRC patients had more contacts up to 10 years after diagnosis (7), while a Dutch study reported patients had 15% more contacts over the entire follow-up period (8). Our results also showed patients had a higher contact rate compared to controls. However, this was only significantly different for 2,3 and 6 years after diagnosis. The British study did not exclude patients with recurrent cancer before the start of the study, or data from patients receiving end-of-life care. Moreover, our study results are limited to curatively treated patients. This might explain why the British study observed more contacts towards the end of follow-up care (5−6 years after diagnosis) compared to our findings.

Another study showed CRC patients had more consultations for back pain and abdominal

pain, cystitis, constipation and adverse drug effects during follow-up (9). Our study clarified that contacts related to musculoskeletal system, for example back pain, and urological problems (cystitis) are more likely to be observed during the first years of follow-up. Contacts related to general problems such as adverse drug effects and digestive problems are presented during the entire follow-up period. This is supported by our findings that patients were prescribed medication for the alimentary tract during the entire follow-up period, while medication related to the musculoskeletal system was mainly prescribed during the first years of follow-up.

Curative treatment of CRC is frequently accompanied by physical complaints such as digestive issues, urological complaints, stoma-related complaints and by psychological issues (16-18). The increased contact frequency related to constipation, adverse drug effects, tiredness and urological reasons and the increased prescriptions of drugs related to the alimentary tract and for anemia may be related to these effects of CRC treatment.

In contrast with another study our results showed patients contacted their GP more for psychological reasons (9). This, combined with the finding that patients are prescribed more benzodiazepines, suggests that the GP is involved in treatment of psychological issues. Earlier research has shown that CRC patients show increased levels of psychological distress (19).

CRC patients showed increased referrals in the 2nd and the 5th year after diagnosis. In Dutch

guidelines CRC follow-up ends after 5 years (3), and in most cases the GP is notified by the specialist about end of follow-up. This could explain the elevated contact frequency in the 5th year after

diagnosis. Earlier research among breast cancer patients showed that a majority of patients feels the need for life-time follow-up, preferably in secondary care (20). The rise in referrals in the 5th year

could be due to uncertainty about end of follow-up. A recent study showed that CRC survivors with a high fear of cancer recurrence tend to consult their medical professional with these fears (21). Future research could investigate whether this tendency for contacts with specialist is higher after end of follow-up care. Another possibility could be that during cancer follow-up other health care issues are less important and postponed till after end of follow-up, as suggested

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by earlier research (22). This also might explain the finding that after end of hospital follow-up (5th and 6th year after diagnosis) patients were prescribed more respiratory drugs, anti-infectives

and dermatologicals. It is known that patients with cancer suffer from more comorbidities (8)

and the elevated health care use of CRC patients might partly explained by these pre-existing comorbidities. However, we assume this effect is small since a recent study showed that increases in GP contacts did not differ between cancer patients with or without comorbidities (23).

If the GP is expected to play a more substantial role in future follow-up care for CRC, it is important to know if this is feasible. A trial comparing primary care follow-up for CRC to secondary care showed no differences in quality of life, patient satisfaction and clinical outcomes when GPs supervise follow-up care, suggesting well-trained GPs are capable of safely performing this care

(24). Our study suggests informal GP involvement in the follow-up of CRC by managing treatment related side effects and offering psychosocial support, suggesting that there may be scope for formal services to be incorporated into the current model of GP care, such as testing for CEA and discussing these results, or referral for liver imaging.

Conclusion

This study suggests that, despite having no formal role, the GP is already heavily involved in care for CRC survivors. The GP is contacted for and prescribed medication for health problems possibly related to (late) side effects of CRC treatment and for psychological problems. Involvement of the GP was higher during the initial years of follow-up, decreased over time and rose again during the end of hospital follow-up. This pattern is consistent with current hospital follow-up routines, in which test frequencies are higher in the beginning of follow-up and decrease over time. If in future follow-up the GP is formally involved this care might easily be incorporated in current GP care. Apart from future developments, recognition of the current role of the GP by surgeons and oncologist and good communication about respective responsibilities of primary and secondary care is important to provide for better and more complete care for CRC survivors. This might also alleviate the expected rise in workload for secondary care because of the rising number of CRC survivors.

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4 Labianca R, Nordlinger B, Beretta GD, Brouquet A, Cervantes A, ESMO Guidelines Working Group. Primary colon cancer: ESMO Clinical Practice Guidelines for diagnosis, adjuvant treatment and follow-up. Ann Oncol 2010 May;21 Suppl 5:v70-7.

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7 Khan NF, Watson E, Rose PW. Primary care consultation behaviours of long-term, adult survivors of cancer in the UK. Br J Gen Pract 2011 Mar;61(584):197-199.

8 Heins M, Schellevis F, Rijken M, van der Hoek L, Korevaar J. Determinants of increased primary health care use in cancer survivors. J Clin Oncol 2012 Nov 20;30(33):4155-4160.

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10 Brandenbarg D, Roorda C, Groenhof F, Havenga K, Berger MY, de Bock GH, et al. Increased primary health care use in the first year after colorectal cancer diagnosis. Scand J Prim Health Care 2014 Jun;32(2):55-61. 11 Hiddema-van de Wal A, Smith RJ, van der Werf GT, Meyboom-de Jong B. Towards improvement of the

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13 WHO Collaborating Centre for Drug Statistics Methodology. ATC index with DDS. 1999.

14 Tisnado DM, Adams JL, Liu H, Damberg CL, Chen WP, Hu FA, et al. What is the concordance between the medical record and patient self-report as data sources for ambulatory care? Med Care 2006 Feb;44(2):132-140.

15 van Wayenburg CA, van de Laar FA, de Waal MW, Okkes IM, van den Akker M, van der Veen WJ, et al. Nutritional deficiency in Dutch primary care: data from general practice research and registration networks. Eur J Clin Nutr 2005 Aug;59 Suppl 1:S187-94.

16 Sprangers MA, Taal BG, Aaronson NK, te Velde A. Quality of life in colorectal cancer. Stoma vs. nonstoma patients. Dis Colon Rectum 1995 Apr;38(4):361-369.

17 Brown H, Randle J. Living with a stoma: a review of the literature. J Clin Nurs 2005 Jan;14(1):74-81.

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