University of Groningen The role of the general practitioner in the care for patients with colorectal cancer Brandenbarg, Daan

(1)

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

it. Please check the document version below.

Document Version

Publisher's PDF, also known as Version of record

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.

Copyright

Other than for strictly personal use, it is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s), unless the work is under an open content license (like Creative Commons).

Take-down policy

If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim.

Downloaded from the University of Groningen/UMCG research database (Pure): http://www.rug.nl/research/portal. For technical reasons the number of authors shown on this cover page is limited to 10 maximum.

(2)

517687-L-sub01-bw-Brandenbarg 517687-L-sub01-bw-Brandenbarg 517687-L-sub01-bw-Brandenbarg 517687-L-sub01-bw-Brandenbarg Processed on: 21-2-2018 Processed on: 21-2-2018 Processed on: 21-2-2018

Processed on: 21-2-2018 PDF page: 85PDF page: 85PDF page: 85PDF page: 85

Patients’ views on general practitioners’ role

during treatment and follow-up of colorectal

cancer: a qualitative study

Daan Brandenbarg, Carriene Roorda, Michelle Stadlander,

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

(3)

86 Abstract

Purpose To clarify experiences and preferences of patients regarding the current and future role of general practitioners (GPs) during treatment and follow-up care of colorectal cancer (CRC). Methods Qualitative semi-structured, audio-recorded, face-to-face interviews in patients’ homes in the north of the Netherlands were performed. Patients were sampled purposively on age, gender, time since diagnoses and primary healthcare use. Data were transcribed verbatim and analysed thematically by two independent researchers until saturation was reached.

Results Twenty-two patients were interviewed. GPs played a significant and highly valued role directly after surgery by proactively contacting their patients and offered support in clarification of medical issues, lifestyle advice, and care for treatment-related side effects. During follow-up GPs provided psychosocial support for patients and family members, besides routine healthcare. Concerning the organization of future follow-up care, most patients expressed a preference for specialist-led services; some said that primary care-led care would be more accessible and less expensive.

Conclusion Though at present, patients perceived their GP is involved in CRC care, they would prefer their follow-up care in a hospital setting. If, in line with recent insights, future follow-up care might become more relying on testing for markers instead of imaging, there may be scope for incorporating this care in current GP routines.

(4)

87

1

6 Introduction

In Western countries, the incidence of colorectal cancer (CRC) is rising (1). Due to improved treatment and earlier detection, the recurrence as well as mortality rates are decreasing (2). Consequently, more patients with a better prognosis are surviving CRC, which is expected to impose a significant burden on healthcare systems (3).

Current European and Dutch guidelines on CRC follow-up recommend measuring the carcinoembryonic antigen (CEA) biomarker and performing liver imaging and chest x-rays every three to six months for the first three years (4,5). While these guidelines for CRC follow-up care do not give GPs a formal role, it has been suggested that primary care providers should have greater involvement, possibly by coordinating follow-up care, to alleviate the burden on specialty care

(6-8). A thorough understanding of the current role of the GP in the management of CRC, and of patients’ experiences and preferences, is needed to inform this debate.

The role of GPs during treatment and follow-up of CRC has been studied using registry databases and qualitative studies (7). These reports show increased healthcare utilization of CRC survivors, probably related to CRC treatment and persistent psychosocial issues (9-11). Qualitative studies of healthcare needs in primary care of patients with cancer indicate that psychosocial needs were frequently mentioned, as were the needs for information, continuity of care, unhurried consultations, and discussion of fear of recurrence (12-14). In qualitative research on the psychosocial impact of CRC in the UK and Canada, GPs were reported to be less involved after diagnosis, except for the management of pain and complications (15,16). However, all studies focused on health care needs instead of actual patient experiences and preferences about the current and future role of GPs. Moreover, no qualitative studies on actual patient experiences and perceptions concerning the role of GPs in CRC care have been performed in the Netherlands.

Methods

Design

A qualitative method was used to provide a deeper understanding how CRC survivors valued the care delivered by their GPs and their visions what GPs’ future role might be.

Recruitment

All patients with a history of CRC in their electronic patient file, treated curatively, were selected from the database of the Registration Network Groningen (RNG). This database is contributed to by group practices in the north of the Netherlands, including 30.000 patients. GPs were requested to determine the eligibility of their patients (no cognitive impairment, no terminal CRC, ability to understand Dutch language) and to invite patients.

Sampling procedure

A group of eligible patients was invited to participate. After the first series of interviews, a subsequent group of patients was sampled purposively based on age, gender, time since

(5)

88

diagnoses, tumour location/stage, type of treatment and primary healthcare use. This information was extracted from the RNG database.

Interviews

Semi-structured and audio-recorded face-to-face interviews were conducted, mostly at patients’ homes, using a topic list (Supplemental Material). Interview topics were developed based on a review of the literature and experiences from a qualitative study among women with breast cancer, conducted by our research group (17). Reasons of GP involvement during CRC treatment and follow-up were explored, as were visions about the preferred role of the GP during these phases. Specifically, opinions about substitution of follow-up care from secondary to primary care were explored. One independent professional interviewer (psychologist-PvH) conducted all interviews.

Transcripts and analysis

Audio files were transcribed verbatim and anonymized (LK). Researchers (DB and MS) listened to the audio files to check for inaccuracies in transcription and to enhance semantic understanding. A thematic analysis was conducted (18) in which two researchers (DB and MS), independently identified relevant segments of the transcripts. Atlas.ti (version 7.5.6, GmbH, Berlin) software was used to process the information. Explanatory codes within the main themes were deductively assigned to segments of the transcripts. Themes and codes were discussed until consensus was reached. The final codes were realized through a simultaneous process of analysing and interviewing, and were checked by a senior researcher (CR). This process was repeated until saturation was reached.

Results

In total, 69 patients with CRC were reported to be eligible by the GPs of three large group practices participating in a database registry (30,000 patients). All patients were required to be registered at their GP practice during the time of study. We invited eligible patients from two GP practices to participate (n = 37), of whom 17 (45.9%) agreed. Using purposive sampling, we then invited 18 patients from the third practice, of whom 5 (27.8%) agreed to participate; 4 patients had a recent diagnosis. We finally interviewed 22 of the 55 invited patients (40%).

No new information was obtained in these five interviews; saturation was reached. The sample comprised 10 women and 12 men, aged 51–89 years (Table 1). Twelve patients had colon cancer and 10 had rectal carcinoma, 6 had received adjuvant chemotherapy and 4 had received radiotherapy, and a median of 9.5 (range 1–22) years had passed since diagnosis. The median number of GP contacts in the first year after CRC diagnosis for included patients was 6 (range 0–14). All patients were referred by their GP for diagnostic procedures.

(6)

89

1

6

Table 1 Characteristics of the interviewed CRC survivors, including timing of interview in years since

diagnosis, tumor characteristics, type of received treatment and the number of contacts with their GP in the first year after diagnosis of CRC

Gender Age Years since

diagnosis Tumor location TNM- stage Treatment Stoma # of GP contacts 1st year after diagnosis

Female 80 22 Colon I/II Surgery No Unknown

Female 70 5 Rectum III Surgery and Radiotherapry

Yes 7

Female 65 10 Rectum II Surgery No 11

Male 56 4 Colon III Surgery and

Chemotherapy

No 6

Female 92 16 Colon III Surgery and

Chemotherapy No 4

Female 64 14 Rectum Unknown Surgery and

Chemotherapy Temporary 3

Male 89 10 Colon I/II Surgery No 10

Male 76 10 Rectum III Surgery and Radiotherapy

Yes 6

Male 63 7 Colon I Surgery No 2

Male 91 26 Colon I/II Surgery No Unknown

Male 88 25 Rectum I/II Surgery No Unknown

Female 65 5 Colon III Surgery and Chemotherapy

No 4

Female 69 9 Colon II Surgery No 14

Male 83 17 Rectum II Surgery No Unknown

Female 66 6 Colon II Surgery No 8

Female 58 5 Rectum I Surgery and

Radiotherapy

Temporary 0 Male 64 19 Colon I/II Surgery and

Chemotherapy

Temporary Unknown

Male 78 5 Colon II Surgery No 6

Male 80 9 Colon II Surgery No 5

Male 81 13 Rectum I/II Surgery and

Radiotherapy Yes 9

Female 64 1 Colon III Surgery and

Chemotherapy No Unknown

(7)

90 GPs’ involvement during surgical and adjuvant treatment

Pro-active role of GP directly after surgery

In most cases, to assess the patient, the GP initiated contact directly after surgery. Patients highly valued this contact. One patient even indicated that he and his GP had agreed on double-length consultations every 6 weeks. In cases where the GP did not initiate a visit after surgery, patients expressed dislike. For other patients, the GP played no role during the treatment of their CRC because they had no bond with their GP or that they had no reason to consult their GP.

GPs involvement in care for family members

GP care was not limited to the patients alone; relatives also consulted the GP for issues about coping with cancer in the family. This was highly valued and it gave a sense of security knowing family members were also cared for.

‘Well I know that my daughter, at certain times whenever she visited the GP for whatever reason, felt she could talk about it. Yes, well, I always say you don’t have cancer by yourself, you’ve got it in your relationship, your family […]’

Patient #4. Male, 56 years, colon carcinoma

Clarification of medical issues

During recovery from surgery, the GP was often consulted for clarification of medical issues, such as questions about treatments or adjuvant therapy. The GP was also consulted for questions about other medical issues, such as for lifestyle and dietary advice. Some patients indicated that they received too much information in the hospital to be able to digest it in the short time allowed. Clarification offered by the GP had a reassuring effect.

‘I’ve had my doubts. I thought it really strange that I didn’t receive radiotherapy, and I discussed that with the specialist, but I also discussed that with the GP. He explained to me all over again why that was the case.’

Patient #3. Female, 70 years, rectal carcinoma

Treatment of adverse effects

The GP was also consulted for medical reasons, and patients indicated that the GP often treated the adverse effects of adjuvant therapies, was consulted for problems related to wound healing and occasionally involved in medical decisions concerning treatment. One patient was grateful that the GP was involved in the decision to change the chemotherapy because of adverse effects.

(8)

91

1

6

‘It made me extremely ill, which got me saying I won’t do it anymore; I quit. Off course there are people around you, my husband was still alive back then, he said that I should go on with the therapy. And well, then the GP, she arranged that I could continue the chemotherapy, and I got a different kind and it made me less sick.’

Patient #5. Female, 92 years, colon carcinoma

Envisioned role of the GP during treatment

When patients were asked what role they would like their GP to play during CRC treatment, several said they would value the GP in monitoring their health situation related to the CRC, providing routine health care, and managing co-morbidities. Moreover, patients indicated that they envisioned a role for the GP in helping with stress control, clarification of medical and lifestyle issues, and treatment of complaints arising from CRC therapy. A few patients expressed a desire for GP involvement in handling issues concerning return to work.

GPs’ involvement during follow-up care

Treatment-related medical issues

Some patients experienced help from their GP for issues related to CRC treatment, such as lumps in the operated area, diarrhoea, rectal blood loss or pain. For some patients, the GP was involved in the management of pain from chemotherapy-induced neuropathy.

Psychosocial support during follow-up

Most of the themes about the role of the GP during follow-up were related to psychosocial issues. One reason for consulting the GP was fear of recurrence, where the GP had a reassuring role. Other patients indicated that their GP referred them for psychological care when they felt unable to cope with the cancer. When some patients or family members consulted their GP for routine healthcare, they also discussed the cancer experiences and outcomes of follow-up tests.

‘I noticed that I was losing blood and, well, that all adds up. I didn’t really feel well; and then, then you become uncertain. […] Well, then you start thinking, after all it is a silent killer, but luckily there were only green lights. Uh, I discussed this with my GP and he also comforted me […]’

(9)

92 Desire for rest and closure

Most patients indicated they did not consult or involve the GP in a structured manner concerning CRC follow-up care. The main reason for this was that the follow-up schedule in specialist care was intensive during the first years, and patients expressed a desire for rest and return to their normal routines.

No, no, we have a great GP, but about this, about the aftercare for the intestine, I actually had no contact, no need for it, because that was all well-organized. You’re glad from half year to half year that you’re getting a period of rest. Because when you have to go for follow-up surveillance again, then the stress comes again.’

Patient #2. Female, 70 years, rectal carcinoma

No reason to consult the GP

A few patients indicated they felt their specialist to be more knowledgeable and better able to handle issues concerning their cancer. According to these patients, the GP was not the appropriate doctor with whom to discuss these issues.

Envisioned role of the GP during follow-up

During follow-up, patients did not see a specific role for the GP. Most indicated that, while receiving surveillance appointments with their specialist, the GP was there to provide regular healthcare. One of the patients indicated that she would like her GP to become more involved after specialist follow-up had ended.

‘This is my last year in the hospital […] and then they say it’s finished and […] we’re not completely comfortable with that. So I would like to [ask the] the PCP […] once a year, [to do] a complete check-up and blood checks, [and] that she keeps doing that.’

Patient #12. Female, 65 years, colon carcinoma

Patients felt that for GPs to organize follow-up tests and discuss results with patients would produce an extra layer in their care, and they felt specialists were more knowledgeable and better placed to handle this follow-up. However, one patient mentioned that the specialist was not really needed for carcinoembryonic antigen follow-up tests because he only had contact with the specialist by mail about the results.

When probed about reasons in favour of moving follow-up to being GP-led, patients suggested that it would be cheaper than hospital care; however, this did not affect their preference for specialist-led follow-up. A few patients liked the idea of the GP taking over follow-up care because the GP is closer to home, and more easily accessed.

(10)

93

1

6 Discussion

Summary of main findings

Most patients indicated their GP played a significant and highly valued role directly after surgical treatment. Many GPs pro-actively contacted their patients and offered support in clarification of medical issues, lifestyle advice, and care for treatment-related side effects. Some patients said that their GP also acted as an intermediate between themselves and specialists. During follow-up, GPs continued to be involved in routine health care, managing co-morbidities, and providing psychosocial support. Patients stated that their GPs’ role also extended to providing support for family members. Concerning the organization of future follow-up care, although most patients expressed a clear preference for specialist-led services, some said that primary care-led care would be more accessible and less expensive.

Comparison with existing literature

As was the case in a UK study, the interviewed patients of CRC expressed that they valued unsolicited contacts (16). Some patients indicated that they continued to consult their GP for psychosocial support or for issues related to fear of recurrence. Earlier research also showed that psychosocial needs are frequently mentioned as important reasons for consultations in primary care among survivors of CRC (14), as is the fear of recurrence (12). Patients with CRC employ various coping mechanisms to deal with their fear of cancer recurrence, including information seeking and efforts to change lifestyle patterns (19). Our study indicated that patients consulted their GPs for these issues. Most GPs have long-term relations with these older patients with CRC, and understand their history, families and coping strategies. GPs and their team therefore appear to be best placed to provide psychosocial support.

The finding that the GP not only provided care for patients with cancer but also for their families is in line with a Dutch registry study which showed that partners of patients with cancer had increased rates of primary healthcare use for somatic and psychosocial problems (20). GPs therefore need to be aware of the need to provide good care not only for partners but also for the entire family.

Our study showed patients also consulted their GP for clarification of medical issues and with lifestyle-related questions. Survivors of CRC welcome guidance on diet and lifestyle in the immediate post-treatment period because of persistent insecurities about these issues (21). In our study patients suggest that GPs are viewed as appropriate physicians to give this guidance. This is important because patients with CRC felt that information and dietary advice was lacking during hospital care (22). Given that a Western dietary pattern has been associated with a higher risk of CRC recurrence (23,24), and that physical activity has been associated with reduced mortality (24), GPs might play an even more valuable role in discussing these issues.

In our study, most of the interviewed patients said the GP was not the most appropriate professional to perform follow-up care for CRC, typically citing a lack of expertise, which is consistent with the results of another Dutch survey (25). In both studies, patients received follow-up in a hospital setting, and may have become accustomed to this routine. It is also possible that

(11)

94

patients and their specialists develop a relationship of trust over time. Explicit involvement of GPs during the early stages of treatment might strengthen the patients’ confidence, which seems essential if substitution of follow-up care from secondary to primary care is to succeed.

Recently, three large RCTs are published on whether intensifying follow-up after CRC could improve early detection and survival (26-28). These studies all report that follow-up is more effective in terms of early detection or survival as compared to no up, and that an intensified follow-up as compared to a minimum follow-follow-up protocol is about equal effective. This sfollow-upports the idea that CEA might be the main primary parameter in the follow-up of colorectal cancer, possibly reducing the frequency of imaging in follow-up care. Testing on CEA, and referring patients to secondary care, in the case of deviances, could be performed by GPs. Considering their role after treatment, and regular routine health care during follow-up, our study suggests there might be scope for incorporating this care in routine GP care.

Strengths and limitations

An important strength is that, because information about patient characteristics and consultation behaviour was available from the GP registry database, it was possible to purposively sample patients. A limitation is that most included patients were long-term survivors, which may have led to recall bias. However, because of the lasting effect of cancer, this bias may have been small; indeed, all patients were able to reflect well and also appeared to benefit from time placing some distance from the experience, allowing them to provide opinions without acute emotional attachment. Moreover, the experiences of long-term survivors and patients with a more recent diagnosis did not differ much.

Implications

Our results may have implications for clinical practice, including the care of patients with other cancers. Although GPs have no formal role in cancer care, patients appear to value unsolicited contact by their GP immediately after surgical treatment. GPs can play a role in providing reassurance, for both patients and family members. Moreover, because patients often feel uncertain regarding their lifestyle, GPs can help ensure the correct advice is given. Although certain issues concerning diet may be specific to CRC, patients with other cancers might have uncertainties about their lifestyle that may not have been properly addressed in secondary care. GPs should be aware of, and prepared for, these issues. Patients with most common cancers require intensive follow-up regimens after their initial treatment, which can be a stressful period. During this period, structured contact with GPs should be adapted to the wishes of the patient, especially when the desire is expressed to take a break from intensive medical services.

(12)

95

1

6 Conclusion

The increasing numbers of CRC survivors are expected to pose greater burdens on healthcare systems. Substitution of follow-up care from secondary to primary care has been suggested to alleviate this burden. Our study suggests that patients value the involvement of GPs in patient monitoring directly after surgery, clarification of medical issues, lifestyle advice, management of treatment-related side effects, psychosocial care of patients and their families, and ongoing routine medical care. If, in line with recent insights, future follow-up care might become more relying on testing for markers instead of imaging, there may be scope for incorporation of this care in current GP routines. This might also reduce the currently observed reluctance of patients to GP-led follow-up due to a perceived lack of knowledge of the GP in this technical care.

(13)

96 References

1 Jemal A, Bray F, Center MM, Ferlay J, Ward E, Forman D. Global cancer statistics. CA Cancer J Clin. 2011;61(2):69-90.

2 Grossmann I, Doornbos PM, Klaase JM, de Bock GH, Wiggers T. Changing patterns of recurrent disease in colorectal cancer. Eur J Surg Oncol. 2014;40(2):234-239.

3 Campbell NC, MacLeod U, Weller D. Primary care oncology: Essential if high quality cancer care is to be achieved for all. Fam Pract. 2002;19(6):577-578.

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;21 Suppl 5:v70-7.

5 Comprehensive Cancer Centre the Netherlands (IKNL). National guideline colorectal carcinoma [richtlijn colorectaal carcinoom]. http://richtlijnendatabase.nl/richtlijn/colorectaal_carcinoom/crc_-_overzicht.html. Updated 2014. Accessed July 19, 2015.

6 Rubin G, Berendsen A, Crawford SM, et al. The expanding role of primary care in cancer control. The Lancet Oncology. 2015;16(12):1231-1272.

7 Meiklejohn JA, Mimery A, Martin JH, et al. The role of the GP in follow-up cancer care: A systematic literature review. J Cancer Surviv. 2016.

8 Emery J. Cancer survivorship--the role of the GP. Aust Fam Physician. 2014;43(8):521-525.

9 Brandenbarg D, Roorda C, Groenhof F, et al. Increased primary health care use in the first year after colorectal cancer diagnosis. Scand J Prim Health Care. 2014;32(2):55-61.

10 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;30(33):4155-4160.

11 Heins MJ, Korevaar JC, Rijken PM, Schellevis FG. For which health problems do cancer survivors visit their general practitioner? Eur J Cancer. 2013;49(1):211-218.

12 Lewis RA, Neal RD, Hendry M, et al. Patients’ and healthcare professionals’ views of cancer follow-up: Systematic review. Br J Gen Pract. 2009;59(564):e248-59.

13 Hall S, Gray N, Browne S, Ziebland S, Campbell NC. A qualitative exploration of the role of primary care in supporting colorectal cancer patients. Support Care Cancer. 2012;20(12):3071-3078.

14 Hoekstra RA, Heins MJ, Korevaar JC. Health care needs of cancer survivors in general practice: A systematic review. BMC Fam Pract. 2014;15:94-2296-15-94.

15 Sahay TB, Gray RE, Fitch M. A qualitative study of patient perspectives on colorectal cancer. Cancer Pract. 2000;8(1):38-44.

16 Browne S, Dowie A, Mitchell E, et al. Patients’ needs following colorectal cancer diagnosis: Where does primary care fit in? Br J Gen Pract. 2011;61(592):e692-9.

17 Roorda C, de Bock GH, Scholing C, et al. Patients’ preferences for post-treatment breast cancer follow-up in primary care vs. secondary care: A qualitative study. Health Expect. 2014.

18 Pope C, Ziebland S, Mays N. Qualitative research in health care. analysing qualitative data. BMJ. 2000;320(7227):114-116.

19 Asiedu GB, Eustace RW, Eton DT, Radecki Breitkopf C. Coping with colorectal cancer: A qualitative exploration with patients and their family members. Fam Pract. 2014;31(5):598-606.

20 Heins M, Schellevis F, Rijken M, Donker G, van der Hoek L, Korevaar J. Partners of cancer patients consult their GPs significantly more often with both somatic and psychosocial problems. Scand J Prim Health Care. 2013;31(4):203-208.

21 Anderson AS, Steele R, Coyle J. Lifestyle issues for colorectal cancer survivors--perceived needs, beliefs and opportunities. Support Care Cancer. 2013;21(1):35-42.

22 Beaver K, Latif S, Williamson S, et al. An exploratory study of the follow-up care needs of patients treated for colorectal cancer. J Clin Nurs. 2010;19(23-24):3291-3300.

23 Meyerhardt JA, Niedzwiecki D, Hollis D, et al. Association of dietary patterns with cancer recurrence and survival in patients with stage III colon cancer. JAMA. 2007;298(7):754-764.

(14)

97

1

6

24 Van Blarigan EL, Meyerhardt JA. Role of physical activity and diet after colorectal cancer diagnosis. J Clin Oncol. 2015;33(16):1825-1834.

25 Wind J, Duineveld LA, van der Heijden RP, van Asselt KM, Bemelman WA, van Weert HC. Follow-up after colon cancer treatment in the netherlands; a survey of patients, GPs, and colorectal surgeons. Eur J Surg Oncol. 2013;39(8):837-843.

26 Primrose JN, Perera R, Gray A, et al. Effect of 3 to 5 years of scheduled CEA and CT follow-up to detect recurrence of colorectal cancer: The FACS randomized clinical trial. JAMA. 2014;311(3):263-270.

27 Verberne CJ, Zhan Z, van den Heuvel E, et al. Intensified follow-up in colorectal cancer patients using frequent carcino-embryonic antigen (CEA) measurements and CEA-triggered imaging: Results of the randomized “CEAwatch” trial. Eur J Surg Oncol. 2015;41(9):1188-1196.

28 Rosati G, Ambrosini G, Barni S, et al. A randomized trial of intensive versus minimal surveillance of patients with resected dukes B2-C colorectal carcinoma. Ann Oncol. 2016;27(2):274-280.

(15)