Cancer follow-up care in New. Brunswick: cancer surveillance, support issues and fear of recurrence. Baukje (Bo) Miedema,. PhD. Dalhousie University Family.
Original Article Article original Cancer follow-up care in New Brunswick: cancer surveillance, support issues and fear of recurrence Baukje (Bo) Miedema, PhD Dalhousie University Family Medicine Teaching Unit, Dr. Everett Chalmers Regional Hospital, Fredericton, NB
Sue Tatemichi, MD, CCFP Dalhousie University Family Medicine Teaching Unit, Dr. Everett Chalmers Regional Hospital, Fredericton, NB
Ian MacDonald, MD, CCFP Dalhousie University Family Medicine Teaching Unit, Dr. Everett Chalmers Regional Hospital, Fredericton, NB Correspondence to: Dr. Baukje Miedema, Dalhousie University Family Medicine Teaching Unit, Dr. Everett Chalmers Regional Hospital, PO Box 9000, Fredericton NB E3B 5N5 This article has been peer reviewed.
The purpose of this study was to find out, from the patient’s perspective and using qualitative methodology, how cancer follow-up care is managed in a New Brunswick health region. From focus group discussions with 23 participants 1-year post-cancer diagnosis, 3 prominent themes emerged: fear of recurrence, cancer surveillance/testing and support issues. The fear of recurrence permeates day-to-day life for many patients. To allay these fears, some patients feel a need to be subjected to extensive cancer surveillance. Emotional support, which is important for survivors, is complex. The majority of the participants in this study received cancer follow-up care from specialists. More rural than urban participants received their follow-up care from their family physicians (FPs). Participants had high expectations for follow-up care, regardless of which type of physician — specialist or FP — provided it. If physicians did not provide the level and intensity of care expected by their patients, they were considered uncaring. We advocate a “transition of care” or “shared care” protocol between the acute cancer treatment provider and the FP, particularly in rural areas. This would ensure that cancer patients have a clear understanding of where to turn for ongoing surveillance, when they fear cancer recurrence or need support. For optimized cancer follow-up care, physicians must be cognizant that careful emotional and clinical management over an indefinite period of time is required, and they must recognize the individual needs of each patient. Cette étude visait à déterminer, du point de vue du patient et au moyen d’une méthodologie qualitative, comment sont gérés les soins de suivi du cancer dans une région de santé du Nouveau-Brunswick. Des discussions tenues avec des groupes de 23 participants un an après leur diagnostic de cancer ont dégagé trois grands thèmes : peur de la récurrence, surveillance du cancer et tests, et questions liées au soutien. La peur de la récurrence est omniprésente dans la vie quotidienne de beaucoup de patients. Pour atténuer ces craintes, des patients sentent le besoin de faire l'objet d'une étroite surveillance du cancer. L’appui affectif, qui est important pour les survivants, est complexe. La majorité des participants à l’étude ont reçu de spécialistes des soins de suivi du cancer. Plus de participants ruraux que de participants urbains ont reçu leurs soins de suivi de leur médecine de famille. Les participants avaient des attentes élevées à l’égard des soins de suivi, sans égard au type de médecin — spécialiste ou omnipraticien — qui les dispensait. Si les médecins ne leur dispensaient pas les soins au niveau et avec l’intensité attendus, les patients les considéraient comme indifférents. Nous préconisons un protocole de «soins de transition» ou de «soins partagés» entre un médecin qui dispense des traitements actifs contre le cancer et le médecin de famille, particulièrement en région rurale. Cette transition assurerait que les patients atteints du cancer comprennent clairement à qui ils doivent s’adresser pour la surveillance continue lorsqu’ils craignent que le cancer réapparaisse ou qu’ils ont besoin d’appui. Pour dispenser des soins optimisés de suivi du cancer, les médecins doivent savoir qu’une prise en charge attentive, sur les plans tant affectif que clinique, s’impose pendant une période indéterminée. Ils doivent aussi reconnaître les besoins particuliers de chaque patient.
© 2004 Society of Rural Physicians of Canada
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Introduction
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Cancer follow-up care is a broad concept with an ill-defined beginning and end, but generally starts after acute treatment has been completed. Followup care is different from cancer survivorship. Follow-up care, as defined in this study, relates to the care provided by specialists and family physicians (FPs) after acute treatment has been completed. Cancer survivorship is a broader concept that is applied at the onset of the illness and thus includes issues related to acute treatment as well as follow-up care. It also may encompass advocacy issues.1 Several studies, including Canadian ones, have examined issues around survivorship;2–4 however, little is known about follow-up care provided by specialists and FPs, in Canada in general, and in New Brunswick in particular. The goals of follow-up care, regardless of the type of cancer, include the following: detecting recurrence, detecting second primary cancers, monitoring for treatment complications, dealing with an altered physical status and providing support for psychosocial problems arising from the cancer or its treatment.5–9 There is debate in the literature regarding the most effective method of surveillance. For some types of cancer the risk of recurrence is high; for others, the risk is low. Furthermore, for some cancers there is a reasonable second chance of successfully treating the recurrence, but for other types of cancer, recurrence heralds a move toward palliative care. Hence, some researchers and clinicians advocate intensive follow-up care protocols, including frequent laboratory tests and extensive imaging tests, and others advocate only regular physical examinations.10–14 FPs are seldom involved in the acute treatment of their patients. This pattern continues into the realm of follow-up care with the comprehensive approach of oncology clinics and other cancer specialists.15,16 In one Canadian study, 67% of follow-up care was provided by oncologists, 18% by FPs and the rest by surgeons.17 One of the cited reasons why FPs are excluded from follow-up care was poor communication between oncologists and FPs.18 In addition, some survivors believe that FPs lack the skills to detect a recurrence.18 This exclusion of FPs from their patients’ followup care may create gaps in care. The most serious gap may be the lack of involvement of the FP if the patient’s illness becomes terminal.14 The few cancer follow-up care studies that have been conducted have focused either on cancer-specific sites, cancerCan J Rural Med 2004; 9 (2)
related health problems, the terminal stage of the illness or on psychosocial issues for patients.19–23 Our research team came together because of the personal experience of a physician team member who saw some patients “fall between the cracks” of tertiary and primary care after acute cancer treatment had been completed. To elucidate the issue of follow-up care in New Brunswick we chose to start with soliciting the perspective of survivors. No such study has ever been undertaken in New Brunswick. The goal was to examine, from the perspective of the patients, the main issues in follow-up care in New Brunswick. We designed a study with a mixedmethods approach, using qualitative and quantitative methods (focus group discussions and a survey). The quantitative study findings 24 confirmed the hypothesis that some patients were indeed “falling between the cracks.” One-third of cancer patients were not sure who was in charge of their follow-up care after acute treatment had concluded. This lack of clarity raised patient anxiety. The quantitative study findings have been published elsewhere.24 In this paper, we present the findings of the focus group discussions regarding patient experiences with physicians who provide cancer follow-up care in New Brunswick.
Setting New Brunswick is a rural province with approximately 750 000 people, of whom 46% to 80% are living in rural areas (depending on the definition of “rural” that is applied).* River Valley Health (RVH), the geographical study area, is the largest of the 7 health regions in New Brunswick, with approximately 170 000 people. RVH mirrors the rural pattern of the province: half the population lives in one urban area (the Greater Fredericton Area) and the other half in rural areas.25 Fredericton is home to the only regional hospital in RVH. In addition, RVH has several smaller hospitals distributed throughout the region that provide limited medical services. The rural nature of the province and of RVH is reflected in the fact that the regional hospital does not provide a complete range of health services. This hospital has an oncology clinic that provides cancer services, with the exception of therapeutic radiation. For radiation treatment patients travel to a facility outside the region. *Statistics Canada (cat. 21-601-MIE2002061) defines between 45% to 80% of New Brunswick’s population as rural, depending on which definition is adhered to.
Methods Data collection consisted of 5 focus group discussions with a total of 23 participants. Three of the 5 focus groups were held in Fredericton, NB. The majority of the patients were from Fredericton, and some were from the outlying rural communities. Two focus groups were held in rural communities. Open-ended focus group questions were designed by the research team, which was composed of 2 FPs and 2 sociologists and was assisted in the summer by 2 summer students (Appendix 1). All focus group discussions were facilitated by the principal investigator (I.M.), who is an FP. Two other team members (sociologists) took field notes, and the proceedings were taperecorded. Study participant inclusion criteria were: age 19 years or older; a diagnosis of cancer at least 1 year prior to the study; and residence within RVH during the follow-up period.26 We did not ask the participants the current state of their cancer because it was not considered to be relevant to the research. Qualitative research results are not intended to be generalized to the larger population. The strength of a qualitative analysis is that it provides a better understanding of the phenomena under study because it is rich in detail and brings the researchers closer to the participant’s world than does a quantitative methodology.27 In qualitative research the researcher provides a detailed description of the participants’ experiences so the reader can determine whether or not the results are transferable to a similar setting.28 Research neutrality in this project was achieved by the diverse backgrounds of the research team members.29 Our smallest focus group had 3 participants, and the largest had 7.26 Participants were recruited with the help of support groups, advertisements, the media and notices in physicians’ offices throughout RVH. A purposeful sampling technique was used to ensure that location, gender and persons with a variety of cancers were represented among the participants (Table 1). The participants signed a form indicating that the discussions would be kept in strict confidence. A socio-economic form requesting information such as age, income and education was completed by all participants. The study was approved by the Dr. Everett Chalmers Regional Hospital Research Ethics Committee. Each focus group discussion was audio taped, the recording was transcribed verbatim, and read independently by all team members.30 The transcripts
were coded. Coding is a technique wherein one looks at blocks of text to interpret the meaning of the text.31 The interpretation of a block of text is jotted down in the sidelines of the text. After each team member had independently coded the transcripts, the team met several times to discuss the emerging themes. The discussion regarding the emerging themes continued until the team members agreed on the number and types of qualitative themes that best represented the discussions, including diverging participant opinions. One team member was responsible for the computer transcript coding in the qualitative analysis software program called NUD*IST. Although NUD*IST is able to facilitate qualitative analysis, it is not a substitute for performing analysis; the analysis of the data was carried out by the researchers.
Results
Profile of focus group participants The average age of the participants was 61 years, with a range between 47 and 75 years. On average the cancer diagnosis occurred 4 years prior to the study, with a range of 1 to 15 years. Eighty percent of the participants were married or living in common-law relationships, and 18 had children. About 1 in 3 participants lived in rural areas, 1 in 5 worked outside the home, more than half had a high school diploma or lower, and half had incomes less than $40 000. New Brunswick is a rather ethnically homogenous province, therefore no attempt was made to ensure ethnic diversity in the sample. Although New Brunswick has a small Aboriginal population, no Aboriginal cancer patients participated in this research.
Table 1. No. of participants, by cancer site and location of focus group Location of focus group Cancer site
Men
Women
Urban
Rural
Breast Prostate Colon Kidney Liver Thyroid Skin Lymphoma
– 4 – – – – – 1
11 – 3 1 1 1 1 –
7 4 2 1 1 1 – –
4 – 1 – – – 1 1
Total
5
18
16
7
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The concept “cancer follow-up care” Before discussing the cancer follow-up care themes it is important to contextualize the focus group discussions. We found that more rural than urban participants received follow-up care from their FPs rather than from cancer specialists. The majority of participants reported a positive experience with follow-up care, although a few did not. One participant felt he was left “drifting” after acute treatment was completed, and another felt she “basically really had no instructions at all ...” and had to “figure it out” by herself after the completion of acute treatment. It was evident that many participants wanted to talk about their diagnosis, the subsequent acute treatment and survivorship rather than about follow-up care. It became clear that follow-up care was not a concept easily recognized by the participants. They did not view their care as compartmentalized into stages, but on a continuum, even though for physicians, and in particular for FPs, cancer follow-up care is a distinct type of clinical care with distinct protocols for some cancers.13 With regard to cancer follow-up care, 3 prominent themes emerged: 1) fear of recurrence, 2) cancer surveillance/testing, and 3) support issues.
Fear of recurrence The most dominant and most congruent theme that emerged from the data analysis, regardless of participant location, gender, or cancer type, was the fear of recurrence. This finding has been documented in other studies.13,32–34 What our data captured, compared to the other studies, is the intensity of that fear. The fear of recurrence is all encompassing and permeates every aspect of life regardless of how remote the diagnosis. One woman explained it in the following way. It never leaves your mind. If you say you don’t think about it, you are telling a lie because it will come into your mind every now and then, especially when you get a little pain.
Another woman in the same focus group stated: If I have a headache I always wonder if it is the headache or if there is something wrong? You always think it is the cancer that has returned.
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There was only one participant who said that she actively tried to forget that she has had cancer. One participant described the impact of cancer and the fear of recurrence as follows. Can J Rural Med 2004; 9 (2)
Any little thing is extremely upsetting. If we had this conversation in my 6th year [after cancer diagnosis] I may not have the same views as in my 5th year. Until I get to the 6th year I will be upset.
Cancer surveillance/testing Some rural patients had to travel long distances for their follow-up care. This travel was not seen to be problematic, but the lack of invasive follow-up tests was. For some participants, clinical examinations for follow-up care were perceived to be inadequate. As one woman stated: I don’t mind taking time off work, but I guess when you go down [2.5 hour drive] and they only examine you I wonder why my family doctor, who diagnosed me, can’t do it.
Many wanted invasive exams such as “blood tests” and “bone scans” on a regular basis. The participants frequently discussed follow-up care routines with other cancer patients. Consequently, some felt that people with certain types of cancers had better follow-up care tests at their disposal than others. A breast cancer survivor asked: Why are there more follow-up tests for bowel than for breast cancer? Why is a mammogram the only follow-up for breast cancer?
There was almost unanimous belief among the participants that surveillance, manifested by testing, was important because it provided assurance that the cancer was in complete remission. One participant expressed it this way. ... it [cancer testing] provides you with great peace of mind.
Several participants expressed a desire for more testing. One stated: ... yearly tests, are not always enough, it leaves you feeling that something is missing.
Paradoxically, cancer testing brought with it a lot of anxiety. This anxiety was based on a number of issues, including physicians who did not return test results expediently, resulting in participants assuming the tests were positive; and false-positive or ambiguous test results that created a lot of strain. In turn, anxiety was alleviated when test results were negative. This cycle of anxiety and relief was repeated regularly. One participant described this cycle. [Two years after initial treatment] … they discovered my PSA going up and they figured there was something wrong … [he
subsequently received radiation treatment] … everything is fine right now and I couldn’t be happier with my health.
Support The third major theme was the issue of support. Support occurred in several forms, from professional — physicians, psychologists, etc. — to family and volunteer support. Participants had both praise and criticism of the type of support they received. Support issues were discussed passionately, and the issue was surprisingly complex. Family member support was considered important but emotionally encumbering. Some participants expressed a desire to protect their family from the impact of having a loved one with a devastating illness, and others felt betrayed by the lack of support from their family. Several felt they were not able to be “themselves” in front of close family members because they would not allow them to have negative feelings. Many felt obliged to be optimistic and cheerful at all times. Although many expressed an understanding for this demand, they found it challenging and frustrating. Others complained that the initial concern expressed by family members was fleeting. One woman said that after acute treatment she missed being the centre of attention in her family. When you are first diagnosed and you have surgery and you are getting so much attention it is great and everybody is worried about you. Then, after three months or so it sort of dies down and you are not in the spotlight any more ... .
Another woman said that her husband experienced a lot of self-pity due to her cancer. I had a hard time with my husband. I found that he was feeling sorry for himself. ... he complained about not being able to cut the grass because it was wet. He complained about his garden. ... One day I got really upset and said “I’m the one that is sick.”
Volunteer and/or professional services were strongly associated with the process of returning to “normal.” One woman recalled, with great affinity, the first visit of the “prosthesis lady.” We were alone and she had all these prostheses displayed on the kitchen counter. Then my 19-year-old came up from the basement and I thought he was going to faint. We had a good chuckle. She is wonderful.
Finally, emotional support provided by physicians was considered important. In fact, participants had very high expectations of their FPs’ and specialists’ support. They wanted the test results returned promptly and they wanted appropriate information
concerning long-term health problems in a timely manner: not too early, not too late. When physicians did not meet these expectations, they were seen to be unsupportive and uncaring. The participants who received follow-up care from their FPs made positive comments and used words like “lifeline,” or “I got a lot of support from my family doctor” and “my family doctor has been my link; I never saw the surgeon or radiologist again [after acute treatment].” Some participants were also positive about specialist follow-up care. Dr. C. checks me every time and when I wait for test results, I know Dr. C. will get right back to me. ...
Discussion Although we ensured a diverse sample of cancer survivors to capture a variety of experiences, the participants’ experiences were remarkably homogenous, with the exception that rural participants more often received their follow-up care from their FPs than did the urban participants. For 2 participants, judging by their experiences, they would be considered to have fallen between the “cracks” of tertiary and primary care. These patients did not have a physician who was in charge of their followup care and they felt “adrift” in the health care system. During acute treatment they had all kinds of support, medical and emotional, but this ceased when acute treatment was completed. The fear of recurrence imbued every aspect of daily life for our participants. It can be concluded that this fear is ongoing regardless of how long it has been since the patient received active treatment. One study reported that post-traumatic stress disorder occurs in up to 19% of cancer patients.35,36 This must be recognized by physicians and taken into consideration during the follow-up period. The anxiety of cancer recurrence fuels a desire for invasive tests and perhaps frequent doctor visits to have all the “lumps” and “bumps” checked out. This desire can be heightened when patients exchange information and draw conclusions concerning their own care based on other patients’ care. In fact, there is little evidence to support the notion that frequent invasive tests result in more timely diagnosis of a cancer recurrence.37,38 It is imperative that physicians pay close attention to their patients’ expectations. Physicians providing follow-up care ought to explain follow-up protocols to avoid misunderstandings and to alleviate fear. Support for cancer patients, as has been demonstrated by other studies, is important regardless of the Can J Rural Med 2004; 9 (2)
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stage of their illness.39–42 However, support is a complex issue. Paradoxically, support can be smothering and add to, instead of alleviate, stress levels. Some support, in particular by well-intentioned cancer survivors, can create tension and strain for the survivor. From this we argue that cancer specialists should make an attempt to involve FPs in follow-up care, to ensure continuity of care after acute treatment. Although the concept of “cancer follow-up care” was not readily recognized by the participants, they were clear about their needs after acute treatment had been completed. Hence, it is important on the part of the specialists to inform the patient’s FP of their patient’s progress. The communication between specialists and FPs must be clear regarding patients’ needs. Patients in New Brunswick would readily accept follow-up care from their FP, particularly in rural areas. FPs are well situated and capable of providing appropriate follow-up. Based on this research, and supported by other studies, a formal “transition of care” (or shared care) between the specialists and the FP when the patient moves from acute care to follow-up may eliminate instances of patients “falling between the cracks.”7 This transition of care would also serve as a signal to the FP that their enhanced participation is needed. Regardless of which physician — FP or specialist— provides follow-up care, they must bear in mind the complexities of the emotional and clinical aspects of this care. Cancer follow-up care is ongoing and chronic, and some patients will never be comfortable being discharged from care, even after they have been in long-term remission.43 Unlike some other chronic illnesses, cancer brings with it a sense of vulnerability and fear of impending death. Follow-up care requires ongoing medical care and careful psychological management, care needs that are very well suited to family practice.
Limitations
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As in most non-randomized studies, and in particular in small qualitative studies, there is always a possibility of self selection bias; in this study it is possible that cancer patients with strong views, either positive or negative, have come forward to “tell their story” during the discussions. Therefore, the findings of this study are not necessarily representative of all cancer follow-up care in New Brunswick. Nevertheless, we feel that the study does provide several important and difficult-to-ignore insights into follow-up care. Can J Rural Med 2004; 9 (2)
Conclusion Cancer follow-up care is complex. Invasive testing for recurrence was desired by almost all participants, even though the testing itself often created considerable stress. Support, although very important, is also complex and can easily increase, instead of reduce, stress. Physicians can reduce the constant fear of recurrence by explaining all aspects of care to their patients. For optimized cancer follow-up care, physicians must be cognizant that careful emotional and clinical management over an indefinite period of time is required, and they must recognize the individual needs of each patient. Competing interests: None declared. Acknowledgement: This project was funded by the New Brunswick Medical Research Fund. We gratefully acknowledge the assistance of Dr. Frederick Burge for his review of the study proposal and Drs. Wayne Putnam and JoAnn Majerovich and Ms. Kelly Nicol for reviewing the manuscript. We also acknowledge the work of Mr. Kyle Omid Vodjani, Ms. Amber McCulley [Swan], Ms. Jennifer de Jong and Dr. Roanne Thomas-MacLean, research assistants.
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Appendix 1. Focus group questions NEW BRUNSWICK CANCER PATIENT FOLLOW-UP CARE PROJECT Introductions Purpose of focus group, introduce the team, note taking and tape recording explained, signing of consent form, participants introduced to each other. 1.
28. Morse JM, Field PA, editors. Qualitative research methods for health professionals. Thousand Oaks (CA): Sage Publications; 1995.
(Probes: Who provided the care? Where did you receive the follow-up care?)
29. Krueger RA. Analyzing & reporting focus group results. Vol 6 of Focus Group Kit series. Thousand Oaks (CA): Sage Publications; 1997. 30. Kirby S, McKenna K. Experience research social change: methods from the margins. Toronto (ON): Garamond Press; 1989. 31. Denzin NK, Lincoln YS, editors. Handbook of qualitative research. Thousand Oaks (CA): Sage Publications; 2000.
2.
What was positive about the follow-up care?
3.
What was negative about the follow-up care?
4.
What role did your family physician play in your cancer follow-up care?
32. Hare M. The lived experience of breast cancer-related lymphoedema. Nurs Stand 2000;15(7):35-9. 33. Mast ME. Survivors of breast cancer: illness uncertainty, positive reappraisal, and emotional distress. Oncol Nurs Forum 1998;25(3):555-63. 34. McVea KL, Minier WC, Johnson Palensky JE. Low-income women with early-stage breast cancer: physician and patient decision-mak-
Can you tell us a little bit about your experience with cancer follow-up care after your acute cancer treatment was completed?
(Probes: Do you see a role for the family physician in cancer follow-up care? If so, what role?) 5.
Is there anything concerning follow-up care that we have not yet discussed that you would like to share with us?
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