We identified five main themes:
1. Patient involvement
Patients differed as to how much they preferred to be involved in information and choice of treatment. Many patients emphasised the need to be fully informed about the disease and to be involved in plans for investigation and treatment and stated that hospital doctors should be more active in eliciting the views of the patients.
"I am the kind of person who asks a lot of questions, and therefore I get enough answers... None of the doctors ever asked, 'Is there anything you wonder about or want to ask about?"' P30, woman, 55, with breast cancer
"I also find it a big problem that I as a patient was not invited to take part in the treatment; that everything was decided on beforehand; I was not allowed to take my share of the responsibility for my own treatment. I believe that this is important for the healing process." P54, woman, 44, with cancer of the uterine cervix
Some patients preferred not to talk much about the cancer, were happy to leave decisions to the doctor and did not want their relatives or friends to ask them questions about their cancer. Many of these patients wanted to decide for themselves when and how to talk to other people about their own views and feelings.
"She has in a way put the disease behind her and wants to look ahead. She is fed up with other people nagging about "how are you" and the children always asking "are you sure you do not feel anything wrong?"" P87, woman, 76, with cancer of the ovaries, written down by her GP
"As a patient one does not have the knowledge to participate in decisions". P64, man, 44, with lymphoma
"The patient has managed on her own and there has been no need for care from me. We are two and we talk and you might say that this is some kind of therapy". Spouse of P03, man, 82, with prostate cancer
GPs were aware that patients differ in this respect and gave examples of their own flexibility. Some of the GPs described how they had clarified what the individual patient preferred, respected the patient's wish and acknowledged the patient's behaviour as a positive way of coping with cancer. Many were critical towards general guidelines for how patients with cancer should be handled and emphasized that all patients should be treated individually.
"Different patients have different needs.... Having one fixed policy – we do it this or that way – I would feel that to be wrong" GP 16
"I might have talked more to her. As for Tom, he would have found it very annoying. ---All in all I believe you have to go at it individually, you must try to deal with the patient at hand" GP 10 about P41, woman, 88, with rectal cancer, and P46, man, 75, with colon cancer
"Yes, I will describe him as a closed, introvert person who denied much about his cancer, he indicated that this was his way of managing it" GP 12 about P60, man, 66, with rectal cancer
2. Treating the cancer and treating the patient
Most patients and GPs stated that treatment of cancer is best taken care of in hospital. However, many patients and GPs stated that the GP should participate in taking care of the patient as a whole person. The general condition, pain, anxiety, family problems or economy may present more pressing problems than the cancer itself, and hospital doctors were not expected to deal with other problems than those connected to the cancer.
"What I miss the most during the care (in the hospital) is that I was not treated as a whole person. My view is that the focus was on the cancer and that the therapy and the consequences of therapy were not seen in connection with the physical problems I already had from previous cancer treatment." P54, woman, 44, with cancer of the uterine cervix
"A good GP is decisive for follow-up. In my case, other things happened after my operation. An old inflammation in my arm, hypertension, fatigue and reduced capacity for work. I also got climacteric problems because I had to stop taking the pills I have taken for ten years. I have been lucky to have a GP who has taken care of me in a good way." P09, woman, 55, with breast cancer
"I have a GP who, in spite of busy days, sees me as a person. I am very satisfied with him." P40, woman, 45, with breast cancer
"Follow-up for the cancer has in my opinion been the responsibility of the hospital, because they have made these investigations. Follow-up for the consequences of the cancer I feel has been my job" GP 10 about P40, woman, 45, with breast cancer
"The situation as a whole is not good. She is often dizzy, is bothered by a feeling of not fulfilling her household duties (she is aware of what is expected of her as a "housewife"), and she is bothered by her stoma when in public" Son of P41, woman, 86, with rectal cancer
3. Time and accessibility
Many patients reported time constraints and lack of continuity in follow-up from hospital doctors. Some patients had visited the outpatient clinic a number of times without seeing the same doctor twice.
"The meetings with doctors during follow-up consultations (in the hospital) are difficult. Never the same doctor. Busy they are, and superficial is my feeling about the situation. The GP is indispensable." P61, woman, 60, with breast cancer
"At the start of the treatment my biggest problem was that I doubted that the doctors had sufficient knowledge about my kind of cancer...little time was found and I got the impression that much of the time was spent reading my medical record. I saw four different doctors the four first times" P85, man, 67, with lymphoma
All the GPs acknowledged the importance of being accessible to patients with cancer and had various ways of organising this. Some GPs saw follow-up of patients with cancer as demanding extra time but said that this was not a big problem because there are never many such patients at the same time on one GP's list.
"I would like to have a specialist in the hospital to telephone. If I were to undertake follow-up for this patient I would certainly have to spend a lot of time making telephone calls trying to find the right person to talk to at the hospital. I sometimes feel that this takes a lot of time." GP 03 talking about P03, man, 82, with prostate cancer
"Some may feel that this is a little troublesome or complicated, and not to mention time demanding, but as GPs we do not have that many at the same time". GP-A in focus group
"I have found a good way for attending to these patients; if there may be a problem with time I often plan a visit, say two weeks ahead, and then it can be altered as needed, but I have found that it relieves some of the time pressure". GP-C in focus group
"In the end I gave him my home phone number, but he never called. It's sort of like having tranquillisers in your pocket but never touching them. You know they're there, and that's it". GP-D in focus group
4. Limits to competence
Factual knowledge is important, but continuity and communication skills are also important parts of GP competence. Several patients stated that they trust their GP to take good care of them and their cancer, provided they know their patients well enough. Two patients did not feel safe with their personal GP; one of them saw the GP once more and talked it through with him and ended up with trusting the GP, the other chose another GP.
"I have been happy to have a very competent personal GP who has supported me in a great way" P09, woman, 55, with breast cancer
"I feel that my GP has taken good care of me and taken me seriously." P26, woman, 62, with breast cancer
"One month after the operation I went to see my GP only to talk to him, tell him in a polite way how (disturbed) I had felt then, and many times before. He thanked me for coming, and after that I feel that my GP takes my problems and worries seriously." P42, woman, 55, with rectal cancer
None of the GPs in our study had participated in administering cytostatic treatment. However, almost all had participated in treatment of patients with advanced stages of cancer where palliation and/or care at the end of life were a subject. Many GPs said that they felt comfortable with taking responsibility for such treatment and had found ways of obtaining the requisite knowledge from the specialists when they needed it. These GPs did not feel that an initial lack of factual knowledge should deter them from engaging in treatment and follow-up when the patients wanted it.
"The time space between each cancer case makes it impossible to keep up with all new knowledge, at least for me". GP 02
"I am a young doctor, so I frequently call the specialist to check out things I wonder about...one can always phone the outpatient specialist if one wants, or talk to a haematologist." GP 06 about P62, man, 65, with lymphoma
"I could talk to anyone of them (oncologists in the hospital), they took one step back and discussed it between themselves, and then gave me advice about medication...Obviously, they have a unique knowledge in this field that I do not have. The medication I gave could not have been so accurate if it were not for them, that's for sure." GP-B in focus group
GPs who had been involved in the care of patients with cancer found that this had been rewarding and stated that it had heightened their job satisfaction. Care for such patients may become an opportunity for the GP to make a difference for seriously ill patients.
"The fact that they (the patient and his family) told me they felt cared for, that was nice. It gives you satisfaction as a GP when you feel you can do something good... and even that you can support them by the end of life; that was really nice...Taking care of people – that's what it's all about, isn't it?" GP06 about P12, woman, 57, with oral cancer
"I found this a very meaningful way of working as a doctor". GP-A from focus group
5. The GP and the specialist should work together
Ideally, primary and secondary cares reinforce each other. There is an increasing trend towards patients being treated and followed in the hospital outpatient clinics rather than as in-patients, and some outpatient services might conceivably be delegated to primary care. Also, increasing attention towards good palliative care may create an opportunity for closer collaboration between GPs and specialists. A new diagnosis is an event that may increase the need for co-ordination, but patients with cancer on the contrary often disappear from the GPs attention.
"He has had no need to consult (his GP) because he has regular follow-up at the hospital. He feels safe about treatment schemes and follow-up." GP 21 about P69, man, 78, with laryngeal cancer
"I expect that I am not the only one who has had problems with well-being after cancer surgery. The hospital should encourage the patients to contact their GP for further support". P09, woman, 56, with breast cancer – reported by her GP
A number of GPs suggested that care for patients with cancer could be improved if the specialist invited the patient, the family and the personal GP to a meeting when the patient is ready for discharge from in-patient care, or when therapy is finished. The main goals for such a meeting could be to share information and define roles in further follow-up.
"It would have been nice if the patient, the surgeon and I could have met and talked about how to do things in the near future." GP 01 about P05, man, 66, with prostate cancer
"It usually works better to cooperate if you have met with people and seen them; and the patient can see that this is teamwork... This is done a lot in psychiatry, they invite us to meetings when a patient is ready to leave the hospital; so we are quite used to attending such meetings". GP 12 about P79, woman, 52, with breast cancer
"I participated in a responsibility group. That is a model I believe in. We all met in the patient's home. I experienced this as something very positive, everybody had a genuine interest in co-operation." GP-B in focus group