Understanding kidney cancer patient needs 2015
The Kidney Cancer Support Network (KCSN) has always been about patients supporting each other through diagnosis, treatment and sometimes through tragedy and grief. At the end of 2015, we undertook a survey to understand more about patients’ experience and their feelings about a range of areas. It was not intended as a national audit of treatments, but as a tool for gauging how patients felt about key stages of their experience and what clinicians, charities and peers could do to support them better. The results highlighted the role of the internet and peer support in both helping patients to understand their condition and the options available to them and in providing emotional support.
The survey had both quantitive questions and sections asking for comments. The 83 respondents were made up of patients (82%) and partners or family members. Of the patients, 70% were female, which is more than the usual gender split for kidney cancer. This may be attributable to the large numbers using the KSCN Facebook support group, which was the primary survey recruitment tool.
76% of patients had had a radical nephrectomy (removal of the whole kidney and tumour) and 14.5% had had a partial nephrectomy. A small number had undergone further surgical treatments, such as removal of the adrenal glands at a later date or removal of metastases in the lungs and bladder. Two patients had not had any treatment.
Radiotherapy had been used by 12% of patients, mainly for palliative treatment of bone pain or for brain metastases. Brain treatment included both whole brain radiotherapy and stereotactic radio surgery.
We asked patients to think back to their first meetings with their consultant and assess how well they understood their own position, the treatment options and the risks; as well as practical issues like receiving written information, knowing the next steps and having a named contact.
Figure One – Thinking back to when you first met your consultant, which of the following is true?
This showed that around a third of all patients had consented to treatment without understanding the extent of their disease (as best known prior to surgery) any other options and risks of treatment. The lack of written information for patients to take away represents a lost opportunity to ensure that patients are better informed. The National Cancer Patient Experience Survey (NCPES) in 2014 showed that 80% of prostate cancer patients received written information but only 69% of other urological cancer patients said they had received anything.
The NCPES of 2014 showed that prostrate cancer patients reported the highest scores (66%) for being advised about side effects but that other urological cancer patients experienced the lowest (48%). This follows through to their questions on whether urological cancer patients felt involved in their treatment decisions with nearly a third of patients saying that they didn’t feel involved in decision making.
As our survey showed a much higher proportion of kidney cancer patients saying that they had not received information, we recommend that charities, patient groups and hospitals work together to produce and distribute suitable materials.
Consultant checklists for outpatient appointments could be used to summarise the appointment and ensure that the patient has all the information required for informed consent.
Respondents were asked where they got the most useful information about kidney cancer. Multiple answers were accepted. Those saying that they got the most useful information from their doctor or clinical nurse specialist were low at 29% and 16% respectively. So it is not surprising that patients and their families turn to the internet and other sources for information. 1 in 4 looked at Cancer Research UK, 1 in 3 at Macmillan and 1 in 5 found information on other UK sites. UK patients do look further afield for information via internet search engines and in the global online patient community, Smart Patients.
The differences in care around both the UK and worldwide are evident to many patients and they raise questions about UK treatment policies when they read about treatments which are unavailable here. Equally, the efficacy of treatments offered in other countries with private and sometimes market driven healthcare are also questioned.
Cancer support groups play an important role in most cancers patient populations. KCSN has over 500 members of their online Facebook community who offer peer support. It also runs a non-Facebook forum and has a website and helpline. Over 90% of people felt that the KCSN had given them valuable information and made them more informed partners in their care.
About 40% undertook research on their individual consultants. For this they used general search engines but 24% also used social media such as Twitter, You Tube and Facebook groups. NHS and British Association of Urological Surgeons performance data is playing an increasing role and of those that did research, 28% of patients had reviewed this data.
Both patients and doctors have differing views on whether patients should be given a prognosis. Our survey discovered that only 4% of respondents did not want to know the prognosis. The others had asked or been told with 61% thinking that they had a reasoned answer, 26% not feeling that they had a clear answer and 6% saying that their doctor didn’t know the prognosis.
Our patients said:
- I found the information about prognosis varied between nurse and consultant and it would be better if everyone was saying the same.
- Initially we were told that it had not spread, but after we learnt that it had spread to the lungs and been missed. Then we were told ‘oh over 50% of the tumours of that size spread” and we did not know that. Upon asking we were told ” We don’t know how much to tell people”. We like to deal with facts where possible. It would have helped us to know there was a big risk of spread.
- If they don’t have enough time to discuss in detail fully with you, I feel there should be offers of referral to other sources, whether it be one to one or group information.
- A straight from the shoulder presentation of the statistics but with full explanation of the range, not just the averages. They should be specific to the grade of tumour once biopsied. Perhaps an example of where someone has outlived the average. We need the reality but we also need to know just how variable the range of response is.
- There are times when doctors simply do not know a patient’s prognosis and they should be honest about this. Information about all available treatments and advantages/disadvantages of each should be discussed with patients so that they can make informed decisions.
- As a carer I felt I couldn’t ask the questions I wanted to as I knew my husband probably didn’t want to hear the answer. It would have been helpful to have had a separate meeting with someone from the medical team.
- Be honest and realistic. In fact cancer and the patient are individual and despite stats no one really knows how long so personally I don’t think doctors should be telling people.
Clinical teams should ask the patient and their family whether they want to know the likely progression of the disease. Information for patients should include an explanation of generalised data including what average/mean/range data shows and the variables and risk factors that affect progression. At each point of progression or complication, the question should be repeated and used to guide discussions on future care priorities.
Urology patients are the least likely of all cancer patients to be asked to consider a clinical trial. The NCPES 2014 showed that only one in seven people with urological cancers had been asked about being involved in research. For other cancers about a third of patients are asked about trials. Our survey showed that people were resoundingly willing to take part even when they knew they wouldn’t benefit. In fact, it was the exact opposite of the scale to the survey above in that only one in seven said they definitely would not join a trial.
Figure 3 Would you consider a clinical trial?
KCSN should continue to seek funding for its clinical trial database in order to assist patients to find suitable trials and clinicians to fill places.
Hospitals could work with local patient champions to promote trial criteria and recruitment paths.
People were asked to select all areas of worry that applied to them and to make additional comments. The chart below summarises the answers.
Whilst death and pain are major concerns, the social, emotional and economic costs of cancer were also important areas in which patients need information and support. The top answer was fear of cancer spreading. At every grade and every stage, patients talk about the uncertainty and fear which accompanies every symptom and every scan. The range of time that it takes for patients to be told results ranges from same day to 4 months.
- I worry the doctors are missing something and that I need to be vigilant in case something can be done to prevent a complication or sudden death. I fear infection – I have had a recurrent highly resistant UTI – I do not like having a defective immunity (because of the drugs). I fear paralysis. I have mets in my spine. I fear my bowel not working due to spinal mets. I fear being paralysed from high up my spine and my life not being worth living. I do already suffer big side effects from the drugs, fatigue is so severe sometimes I can’t move at all. I fear I will need to pay for my drugs as they might not be approved by NICE and then I will lose all my savings I want to leave for my kids.
- My dad just doesn’t know how his end will be or when. He is so afraid of getting stuck in hospital.
- I wish there was an assisted dying programme.
- I worry that the new immunotherapy drugs will not be quickly approved. I already have three friends dying who have no treatment options on the NHS.
- I worry that my symptoms will become unmanageable and that I won’t get the type of home support that I need.
Patients need access to appropriate emotional support to help them cope with their diagnosis.
Family counselling to support carers and children is also important to many patients.
Access to advice on employment rights and money matters such as benefits, pensions and debt management would bring relief to patients. It should be proactively offered to all without assumptions about their financial status.
Information about social and palliative care could also be introduced earlier to enable families to understand the support available.
Our relationships with partners, family and friends are often what gives meaning to peoples’ lives and having cancer and facing death creates fundamental shifts in the family and in individual happiness. Despite the tsunami of emotion outside the hospital, only 3 patients in the survey had ever discussed relationship or sexual matters with their clinical team. 68% of those responding to the question, “If you are in a relationship, how has this been affected by cancer?” said that it had had a negative effect on their relationship.
The main themes of the comments were around:
- Relationship changed to one of patient and carer.
- Communication problems including having different needs in relation to what they wanted to talk about, being unable to express emotions and trying to protect the partner by not sharing information. Several people said that their only conversation was about cancer and illness and they felt robbed of the ‘normal’ them.
- Loss of sexual intimacy due to physical problems, drugs, fatigue and general relationship difficulties.
- Some people commented that the change in earning power and the financial difficulties which arise from cancer was causing relationship difficulties and worry for them.
- Cancer changes everything. My wife now worries about everything I do in case I am taken unwell whilst away from her and home. The amount of stress my wife has now is detrimental to her health and effects both myself and our children.
- My husband often seems angry with me (and my cancer) as it disrupts his life. I know his future has changed too but it makes me worry about how things will be when I need more care.
- My partner had to become my carer due to a delay in my diagnosis. This put a huge strain on him as he also had our 3 children to look after.
- My sex life has been badly affected – my hip might dislocate. I think this illness has caused loss of libido. My husband is doing a lot more childcare – which is maybe a good thing! But I wish I could do my share, especially as I am not working, and would like to spend more time with them.
- It has almost broken down, not the same.
- It has affected our ability to talk to each other as my husband can’t cope with the thought of what might happen. We used to be able to talk about anything. Also, we only ever plan a couple of months ahead.
- Devastating – mentally more than anything. Difficult to come to terms with. I feel that only other patients really understand what you are going through.
- It has shocked us both and think because we both are worried that we are short with each other and our sex life has disappeared.
- Married 33 years, hard for both of us, worry about not having a long time together to enjoy retirement if I reach it. I worry about leaving my wife and not caring for her & supporting her. Our sex life has become non-existent.
Other patients said that it had brought them closer together and that they enjoyed making their time together special.
- Become much closer and more appreciative of each other but my partner, understandably, has a tendency to worry about me a lot and be over-protective.
- It has made us stronger. My husband and I have been through a lot and with adversity we are stronger – this is the strongest we have ever been!
- Brought us even closer and realise how much you take people for granted.
Clinicians should ask if the patient wants to talk about or seek support with sexual activity. Advice on this should be included in the written information provided to new patients and those starting any new type of treatment which may affect them.
We asked, ‘Have you ever had discussions about how you or your partner/family member wants to be cared for at their end of life?’
The answers are interesting because over 40% of the respondents had metastatic disease and would have been given a terminal diagnosis and been on palliative care pathways. Over a third of those on 1st or second line drug therapy said they are not at end of life. Whilst this represents a possible ‘positive attitude’ it also means that people would not be prepared for the type of choices that need to be made at end of life. If they lost capacity, their relatives would be making choices for them which may be against their wishes.
Those who had had discussions or made written plans were happy that they had made this choice as it made them feel more in control. Patients who have sought the support of their local hospice even if they were not in the final months of the disease had found it useful.
- It is obviously important to have a DNR in place when it is needed, but whilst on holiday recently abroad, I was consigned to a morphine drip and written off without a discussion with me. My husband fervently challenged the decision and eventually I saw a cancer specialist- I was in a lot of pain, but not dying! I know this was not the UK, but I think doctors can sometimes think certain treatments are not worth it for the terminally ill. We are still alive! And we are not dying until we are dying!
- I believe there is benefit in including the local hospice early on in your care as both patient and carer have more time to deal with their fears. I chose to involve them early and feel we have both benefited from it, even though it is occasional contact via phone to discuss pain relief.
- People don’t really understand what could happen as we don’t understand how the disease might progress and what care could be offered. I wouldn’t want CPR if I had advanced disease.
- Although it is a sensitive subject, I feel that medical teams don’t come forward enough in offering advice or help. It has never been mentioned to me .
- I feel it is important to ask how much they want to know and also to offer the full range of support such as Macmillan, Hospice, Marie Curie, any local care. Good liaison with GP and local nursing/ social services is vital. It should not be the patient who has to go hunting for support. It should be laid out for them and then the decision to take it or not is theirs. I felt as if I had been abandoned.
- We were referred to our local hospice when there were no treatment options available. I feel this was the perfect course of action. Our oncologist was very supportive and never discharged my husband. He was always there if needed and this was perfect. We took great comfort in that.
Standard written information for patients and their families should include signposting advice to organisations that can help with planning end of life care such as local hospices, Dying Matters, MyDecisions and Macmillan.
Doctors should ask patients with advanced disease whether they have any questions about dying and the care that they can receive and make appropriate referrals.
Discussions need to be had with both the patient and their family (with permission) so that communication lines are clear.
We asked patients to tell us what they would like to tell their clinical teams about where they are doing a great job and how they could make things better.
Whilst surgeons and consultants are given due credit for their care, it was nurses in both urology/oncology and in community settings who were most often mentioned as examples of where patients had got support. The Clinical Nurse Specialists scored relatively lowly on the information provision score in section 3 but this section shows that they are valued for being a point of contact, explaining things in plain language, being a practical support in coordinating care and in providing emotional support to the whole family. Macmillan was frequently mentioned as a good source of support.
- When I did have a specialist nurse she was fantastic. She told me and my family members to contact her any time. She always answered my queries in such a clear way. She managed to give true picture whilst being reassuring at the same time. She referred me for counselling and suggested I join her local support group. She always listened and addressed my concerns seriously no matter how silly they may have appeared. It’s such a shame that she’s moved on and I’m now without a nurse.
- I like being able to email or ring with a problem and I know that they will see me in an emergency. I also found my hospice nurse great at practical things like getting benefits paid.
- My trial nurses helped me a lot, they seemed to have more time.
General practitioners did get some criticism because of the lack of a diagnosis of kidney cancer at an earlier stage. However, many patients also cited examples of good follow up care in the community which was coordinated by the GP. This included providing information, referring to hospices and arranging at home care. GPs were more likely to ask about emotional health and refer to counselling.
- GP sent me for counselling. Then at end of that counsellor sent to self esteem group and I had antidepressants. Doctors at my practice do read my notes before seeing me so I don’t have to tell unfamiliar ones all my history every time I see a new one.
- My GP is understanding and I can openly cry in front of her.
Patients were generally satisfied with the services at a consultant level although the support services such as delays in reporting results, long delays in outpatients and mistakes and delays in follow up were a cause for concern. Most complaints were to do with communication. This ranged from a feeling of not being told enough to being told in terms they couldn’t understand highlighting the need to check with the patient for their level of understanding and their wishes in terms of becoming an informed patient.
Additional areas of interest were better information about how to look after yourself post-surgery and in the longer term e.g. nutrition, avoiding hernias.
- Our team were absolutely fantastic at Guys. From surgeon to oncologist to specialist nurse. Our oncologist had the perfect manner always gave us the time needed. He was honest but with compassion and always positive which gave my husband confidence. For us everyone’s attitude was as important as their medical knowledge.
- It would be helpful for the medical team to try and understand that the things they see and say to patient are interpreted differently by us. I don’t think they really understand that we are trying to absorb a lot of information with limited clinical knowledge.
- My surgeon who explained everything about my very complex surgery because he took the time to actually ask me how much I wanted to know and in what detail. He also gave me hope by telling me about a patient, much older than me, who had survived an identical surgery and was still cancer free five years later.
- I am happy with my team but I would like to have copies of all scans and bloods automatically copied to me. Things can get lost and I also have other hospitals caring for me so I would like to develop my own notes.
- My medical team takes my ideas and concerns seriously and I feel listened to.
- Particular consultants who respected the fact that I was an intelligent individual who needed to feel an element of control over my own health and treatment.
- It would help if they checked first whether I had been told it was cancer, rather than blurting it out randomly in the middle of a sentence. Also, medical staff should inform patients about their eligibility for an NHS Medical Exemption Card. Offer to provide copies of all notes – patients are often apprehensive about asking for these.
- Doctors should make sure there is .. some support in place. When I got told I had a tumour, I was just sent away to wait for an op date. No support whatsoever. After the op I was sent home and again no support. I felt the loneliest and most frightened that I’d ever felt.
- Royal Free are excellent and I think access to any trials is imperative. They know better than us what trials are available and suitable for you.
- Only criticism is that the consultant could have been a bit more realistic with the effects the surgery would have and I felt that the consultant was blunt on one hand but also tried to sugar coat the surgery a little.
- Copy all paperwork to patient without having to ask for it because most people don’t like to think they are checking up on things. Be more organised so appointment follows results.
KCSN was also interested to evaluate the benefits and risks of patient support groups such as the KCSN itself, online communities and face-to-face groups. The data is biased in that the participants were members of the KCSN Facebook group or those registered with the charity. However all the comments were very positive with several saying that it was a life-saver for them – sometimes in terms of the emotional support and sometimes because of the practical advice to report symptoms urgently, find a trial, change doctors or how to manage side effects.
- The Kidney Cancer Support Network has been incredibly supportive and informative. I have always found answers to any questions I might have that I don’t feel have been explained by my consultants. The support I have received by group members in the forum has been the most important to me. Being able to speak to other patients is what keeps you going through everything.
- Online support through Facebook. It helped me to realise what is normal (e.g. random pains) and that the monitoring I get is of a high standard.
- The KCSN Facebook group were an invaluable support for the psychological side of dealing with cancer. Without this group our 4 year journey would have been very different. I honestly think having other people to talk to saved me from having a breakdown. The support site should be prescribed by all oncologists along with the medication !
- KCSN on Facebook have helped me more than anything or anyone else.
- KCSN has been by far the most helpful, both in terms of information supply, learning from other patients and a support network that understands.
Every patient should have access to a Clinical Nurse Specialist in Renal Cancer.
Patients should be proactively offered copies of scans and key tests
Clinicians should refer patients and their families to appropriate psychological support, including support groups such as Kidney Cancer Support Network.