Abstract
Background: Continuity is an important aspect of cancer care that is often a challenge owing to the movement of patients between family practice, cancer clinics, and hospitals.
Objectives: To investigate the experiences of cancer patients in relation to continuity of care.
Methods: A qualitative study was conducted in a family practice setting. Semi-structured interviews were used for data collection. 10 cancer patients with a wide variation in their disease duration and experiences with medical care were interviewed. Open questions were used to encourage patients to express their personal experiences with cancer care. The interviews were recorded, transcribed and analysed by three researchers using thematic analysis.
Results: Cancer patients experienced a lack of information concerning cancer and its treatment. They also perceived that the cancer treatment made them suffer. In the patients’ opinion, the family doctor has a limited role in cancer care. However, the patients felt that the family doctor should be aware of their health. The patients’ satisfaction with the oncologist's care was high. They considered that their role in cancer care was to mediate an exchange of information between the oncologist and the family doctor.
Conclusion: Cancer patients experience continuity of care in several ways: continuity in cancer care should be implemented by co-ordinating activities, such as regular check-ups, a clear timeframe and provision of adequate information. In addition, communication between the primary and secondary sector could be improved.
Key message(s):
• Patients experienced different problems in cancer care. Focus should be placed on communication between the doctor and patients, as well as between primary and secondary care.
Introduction
The care of people with cancer is often a challenge for primary care. Treatment of this disease needs a specific approach, and is therefore, arranged at the specialist level. However, cancer patients often have co-morbid diseases, meaning that they require regular monitoring by different healthcare professionals at different points in time (Citation1,Citation2). Previous research revealed that cancer care can be organized as sequential, parallel, or shared between the primary and the specialist levels (Citation3). Moreover, the role of the primary care doctor in cancer care cannot be underestimated as he/she remains in contact with the patient for years (Citation4,Citation5).
An important aspect of the care of patients with cancer is continuity. According to the literature, there are different types of continuity of care: informational, management, and relational (Citation6,Citation7). All of these are equally relevant, but achieving continuity of care if patients move between the family practice, cancer clinics, and hospitals is often a challenge. Thus, contrary to what is expected in cancer care, continuity tends to be weak (Citation1,Citation2,Citation8).
There is no doubt that the central position in the care should be occupied by the patient. Therefore, continuity should be viewed from the patients’ perspective. A qualitative study design is particularly suitable to ascertain patients’ experiences and needs (Citation9,Citation10). Until now, little has been published about cancer patients’ experiences with continuity of care and about their view of how it is applied in cancer care.
In Estonia, primary health care is provided by family doctors, who are usually the first contact medical specialists for all health problems. Owing to the gate keeping function of family doctors, patients require their referral to have free access to other medical specialists, including the oncologist (Citation11). There is often shared or parallel care, and patients are treated by both specialists. This is typically the case with cancer patients: the family doctor makes a preliminary cancer diagnosis; active treatment is prescribed by the oncologist; rehabilitation and palliative care are the responsibilities of the family doctor; and non-cancer medical problems of the oncological patient have also been managed by the family doctor until now. So far, no studies have analysed continuity of cancer care in Estonia.
The aim of this study was to investigate the experiences and needs of cancer patients with for continuity.
Methods
This qualitative study was conducted using a phenomenological approach, which provides a description of human experience. Phenomenological research seeks to describe experienced phenomenon and to obtain a view of people's motivations and actions (Citation12–14). We focused on describing the experiences and needs of cancer patients for continuity.
The analysis was based on one pilot interview and nine interviews.
Patients
We contacted ten family doctors to find patients with a confirmed cancer diagnosis. The doctors we approached had expressed an interest in participating in this study. Lists of potential eligible patients were screened by each family doctor to exclude those with terminal illness or severe mental illness. The participants included in the study showed diversity in terms of gender, age, occupational background, disease duration and location.
presents the general characteristics of the patients. Of the patients, 6 were female, and most of them were 60 years old or older. The most prevalent location of cancer was the digestive tract (4 patients). For half of the patients, the cancer had been diagnosed less than five years earlier. Almost all patients had undergone surgery, and 7 had received more than one type of treatment.
Table 1. General characteristics of the study group.
Methods
Individual semi-structured interviews were used for data collection. The interview guide was compiled by the authors based on the available literature on continuity of care (). Continuity was neither defined nor inquired about directly. Open questions were used to encourage patients to express their personal experiences with continuity of cancer care. Before the study, a pilot interview was conducted with 1 cancer patient to check his understanding of the study questions and receive feedback. The pilot interview was also included in the final analysis.
Table 2. Interview guide.
Setting
All eligible participants were invited to the study centre to sign an informed consent form. Prior to the study, interviewees were informed about the aim of the study. They also had the possibility to contact the researchers later if they remembered something important or wanted to correct anything, although no participants took up this offer. We did not contact the interviewees to ask for their comments about the study.
All interviews were conducted by the first author in the university setting (Department of Family Medicine, University of Tartu) between October 2008 and February 2009. All interviews were recorded with a Dictaphone, lasting from 35 to 120 min (mean 63.4 min).
Data analysis
The interviews were transcribed verbatim and analysed using thematic analysis, the latter identifying patterns of similarity in the text, which is relevant to the research question (Citation12,Citation15). Analysis was conducted as collaborative negotiations between the authors. All authors have competence in conducting qualitative studies in medicine and the second author also in social science. First, we read the transcripts to get an overall impression of the interviews. Second, we identified and coded units of meaning representing different aspects of the participants’ experiences of cancer care. Third, the coded data were grouped under broader categories, and compared with the original transcripts for consistency and contextual verification. Following this, we summarized the contents of each code group to generalize the descriptions and concepts concerning continuity in cancer care. Finally, all authors discussed the coded data and agreed on the themes. The data was clustered around four themes and several subthemes.
Ethics
The Ethics Committee of the University of Tartu approved the study in 2007.
Results
Theme one—the treatment process
When discussing their experience of cancer treatment, the patients remembered it in detail regardless of the time since the diagnosis. The treatment was described as a painful and even unbearable process. The patients had heard about complementary and alternative medicine, but none of them had used it. The patients seemed generally suspicious of alternative medicine and even referred to biomedicine as the ‘traditional medicine’—thus indicating sympathy and support of the public health care service.
The treatment process was the one of the broadest themes in the interviews; therefore, it is divided into four subthemes.
Subtheme one—provision of information. All patients reported that having enough information about cancer was of the utmost importance for them. However, they felt that they had not received all the information they needed from the medical personnel.
To find the necessary information, patients attempted to use different sources and searched most often for books about cancer and read them.
After this illness I began to look for books in the library about health, and I do not really know what their headings were, now I have these books at home (P3).
Subtheme two—disease monitoring. The need for regular checkups with the oncologist was mentioned in all interviews. According to the patients, the next appointment was always fixed by the oncologist, who was considered an ‘experienced person.’
There they already call you, the time is fixed, you go at that time so that in the oncology clinic these things are clear (P1).
Subtheme three—the role of the patient. In the patients’ opinion, their role in disease monitoring was to attend the next check-up at a given time. They also felt a responsibility for sharing the oncologist's information with their family doctor. The patients noted that they had changed their habits after the cancer diagnosis in only a few interviews.
Talking about the patients’ role in cancer care, the interviewed patients reported being requested to give their opinion about planning cancer treatment. None of therapies had been prescribed without their consent.
First they asked me, shall we take off a half or the whole [breast], it was clear to me the whole … with me all has been so that nothing has happened against my will (P7).
However, they noted that they trusted the doctor's opinion as expert judgement more than their own.
I haven't got medical education and don't say a word. These people [oncologist], have experience, after all, I'm not the first or the last one and I think that they must rely on their experience and … and maybe on recovery percentage and all other things (P9).
Subtheme four—satisfaction with care. Generally, all patients were satisfied with the cancer care. However, patients emphasized different aspects when illustrating their satisfaction. When describing satisfaction with the care provided by the family doctor, most patients reported that their doctor was clever and empathetic, and the family doctor had known the patient for a long time.
When describing satisfaction with the care provided by the oncologist, the patients reported that the oncologist was their ‘lifesaver.’
The most important medical specialist in cancer care in the patients’ experience was their oncologist. The patients did not view their family doctor as a person engaged in cancer care.
My family doctor has absolutely nothing to do with it; I have my own specialist doctor (P3).
However, the family doctor was important in caring for other health problems. Moreover, patients thought that the family doctor should be aware of their health.
The family doctor has to be universal in this sense (P1).
As to the treatment process, the family nurse was mentioned as well. In the patients’ opinion the role of the family nurse was to perform quite specific health care procedures, such as taking blood samples or updating prescriptions. According to the patients’ description, family nurses were familiar with their general health.
My family nurse knows everything as well as my family doctor does (P9).
Theme two—my disease
Some patients tried to find the cause of their disease (e.g. genes, infection), although they felt uncertain about it.
I think that my cancer could be caused by appendicitis (P4).
However, there were also patients who thought that cancer is their destiny.
All patients agreed that cancer has affected their lives, mostly because of the persistent symptoms.
I can't lift anything (P2).
Now I have incontinence, so I have to use Pampers [diaper] every day (P6).
Theme three—myself
The patients tend to describe themselves in positive terms compared to other people. Moreover, the physician's opinion was important.
Doctor [oncologist] said that she had noticed it already during the operation that I am a tidy woman (P10).
Theme four—the medical system
When describing the medical system in general, patients found many shortcomings, such as long waiting times for doctors’ appointment, incompetent workers, and overcrowded places.
The oncology out-patient clinic, if I have to say is primitive, because nobody knows anything, I also think there are too many patients (P9).
The patients expressed the opinion that an electronic health record is important and improves the medical system.
I think that diagnosing and doctors’ communication is smoother when using computers (P1).
Discussion
Main findings
This study was conducted to find out what patients felt about continuity of care. Cancer patients were selected because cancer is a prevalent chronic disease that requires regular contact with a variety of health care professionals. From the medical point of view, cancer is nowadays seen as a disease like any other: people develop it, recover from it but can also die because of it. However, from the patients’ point of view, cancer is often considered more frightening than other equally lethal diseases (Citation16). Thus, it is essential for medical specialists to be aware of the patients’ ideas and fears concerning cancer and its treatment.
In this study, the cancer patients experienced a lack of information about cancer and its treatment. They also perceived that cancer treatment made them suffer. Patients considered that their role in cancer care was to mediate the exchange of information between the family doctor and the oncologist and to attend the next check-up at a given time.
Lack of information was seen in several aspects, for example, regarding the knowledge of co-ordination in cancer care or dealing with side-effects. Patients adopted their own strategy to overcome this, and looked for books on cancer care and read them. A patient with a chronic disease is an expert in his/her illness. However, it may be difficult for him/her to process all the necessary information. Therefore, it would be more helpful for patients if more time was taken by the medical specialists to discuss this.
Interestingly, none of the patients interviewed in this study used complementary or alternative medicine. Complementary and alternative medicine was described as ‘suspicious.’ This may be related to the influence of the interviewer: knowing that the interview was conducted by a physician the patients may have denied using alternative medicine. Moreover, the doctor–patient relationship can influence whether the patient resorts to complementary and alternative medicine. As all interviewed patients were satisfied with their cancer care, it was negatively correlated with the use of complementary and alternative medicine services.
Irrespective of the shortcomings, the patients’ overall satisfaction with cancer care was high. This could be associated with the fact that cancer is usually seen as a lethal disease, which also explains their judgement about the oncologist as their ‘lifesaver.’ It is important to note that patients were recruited who survived cancer and they were not terminally ill. Interviewing a group of dying cancer patient may have revealed totally different perspectives. Patients included in this study are probably relieved and thankful for being alive and thus have more positive perspectives and opinions. They do not share the life world of the terminally ill, but in contrast may have more experience of rehabilitation and relations to primary care.
Patients experienced a modest role in their own cancer care, and they considered that regular check-ups and a clear timeframe provided by the oncologist were important. It is possible that cancer patients feel insecure, and with someone else keeping control they could gain more confidence. The oncologist's opinion was seen to be of the utmost importance. Patients admitted they did not have the competence to make decisions concerning cancer care, even when most of the decisions affected their life enormously, such as amputation or serious side-effects of treatment. More attention should be paid to how to involve patients in their treatment process, especially when treatment is multimodal, long-term, and often has side-effects. One possibility would be to integrate family doctors better into cancer care. In the patients’ opinion, the family doctor plays a limited role in cancer care, but they thought that the family doctor should be more aware of their overall health.
Strengths and limitations
We used individual interviews that offered patients the possibility to report experiences and perceptions of the disease associated with private and/or delicate topics. The researcher who conducted the interviews was a physician, who could have influenced the views presented by the patients. The researcher introduced herself as a physician conducting research not involved in the patients’ care to minimize this. However, knowing that the interviewer was a physician, patients did not have to explain all medical particulars and/or could talk more freely about delicate problems, e.g. castration and amputation.
Most patients had the most prevalent types of cancer, such as breast, prostate, or digestive tract cancer. Having a rare type of cancer could have affected their disease experience. Half of the patients were recruited more than five years after diagnosis, which can be seen as a limitation because of the accuracy of recalling actual experiences. However, it was found that the patients remembered their experiences quite clearly, regardless of the time since diagnosis. Moreover, recruiting patients with different backgrounds provided a broader view of the cancer patients’ experience with continuity of care. Ten interviews were conducted and were found to be consistent between the experiences of participants. It cannot be said with certainty that all themes were covered within these interviews. There is no definitive answer in qualitative research as to how many interviews is enough. Every cancer patient has his/her personal experience. Therefore, few interviews can be rich material in phenomenological research (Citation13,Citation14). However, there are also shared experiences concerning continuity in cancer care. We found both experiences in our interviews, and personal experience is often based on shared experiences and understandings.
Comparison with existing literature
According to the literature, cancer patients require a large amount of information about their disease, which could be related to the threat and uncertainty of cancer diagnosis (Citation17). Therefore, more attention should be paid to providing relevant information and to communication. Kendall et al. also suggested that one of the key issues in caring for cancer patients is communication (Citation4). Lack of information may be the reason why the number of cancer patients using complementary and alternative medicine is quite high (Citation18). Moreover, cancer patients tend to like system and order, which could be related to the fact that cancer is described as a fatal or final disease. Similarly, Danish cancer patients considered guidance and clear co-ordination in care organization as being important (Citation19).
The patients perceived their role as mediating the exchange of medical information between the oncologist and the family doctor. This can be explained by the practice followed in the Estonian health care system: specialists pass patient records on to the family doctor by post or by handing them over to the patient, which is unsatisfactory because it takes time and the record may be lost. However, through the development of a nationwide electronic health record system (E-health), ‘posting problems’ should soon be resolved (Citation20).
We found that the family doctor has a limited role in cancer care. According to the literature, cancer patients perceive that the family doctor plays a unique role, especially in ensuring continuity of care throughout the cancer journey (Citation4). Primary care doctors themselves are keen to be involved in cancer care through sharing information and clinical advice, encouraging the patient, and providing palliative care (Citation21,Citation22). Most importantly, they view their role as being close to their patients (Citation5).
Implications
This study demonstrates that continuity is an important aspect of the care of cancer patients. Hence the study also points to aspects that probably need assessment or improvement, for example, finding that the family doctor has a limited role in cancer care. As to the fact that most family practice attendees have several co-morbid diagnoses, including cancer, the family doctors’ role in cancer care needs to be further discussed (Citation23,Citation24). Multi perspective interviews with patients and health care professionals would provide important knowledge in this field (Citation24). More qualitative studies with family doctors might bring further clarity to their role in cancer care.
CONCLUSION
Cancer patients experience continuity of care in several ways: continuity in cancer care should be implemented by co-ordinating activities, such as regular check-ups, a clear timeframe and provision of adequate information. Paying more attention to these aspects would improve the cancer patients’ feeling of being well cared for. The patients’ satisfaction with cancer care is high and they highlight the oncologist's personal continuity of care. However, the family doctor should be aware of their overall health. Communication between primary and secondary care could be improved.
Acknowledgements
The authors express their gratitude to the interviewed patients.
Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
This study was financially supported by the Estonian Science Foundation (grant No. 7596) and by targeted financing (TARPO 0821).
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