Appendix 6Conservative Kidney Management Assessment of Practice Patterns Study survey: results tables
Questions regarding chronic kidney disease in your unit
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1. How many FTE (full time equivalent) consultants (including CKD, dialysis and transplant) do you have working in nephrology in your unit? ___ FTE |
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Statistics |
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n | Valid | 65 |
Missing | 2 |
Mean | 7.35 |
Median | 6.60 |
Range | 39 |
Minimum | 1 |
Maximum | 40 |
Percentiles | 25 | 3.50 |
50 | 6.60 |
75 | 9.20 |
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2. Do you have a Multi-Skilled Renal Team (MSRT) available to manage patients approaching RRT in your unit? |
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Answer options | Response per cent | Response count |
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Yes | 98.5 | 66 |
No | 1.5 | 1 |
Answered question | 67 |
Skipped question | 0 |
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2.1. Do you have regular MSRT meetings? |
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Answer options | Response per cent | Response count |
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Yes | 87.9 | 58 |
No | 12.1 | 8 |
Answered question | 66 |
Skipped question | 1 |
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2.1.1. If yes, how often do you have the meetings? |
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Answer options | Response per cent | Response count |
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Once a week | 56.9 | 33 |
Once a fortnight | 8.6 | 5 |
Once a month | 24.1 | 14 |
Other (please specify) | 10.4 | 6 |
Answered question | 58 |
Skipped question | 9 |
Only meetings for patients attending low clearance in [unit].
Every 3 months meeting of full team: but weekly discussions of individual patients.
Twice a week.
Joint clinic and specialist nursing staff for this patient cohort.
Transplant and advanced kidney care twice weekly.
Pre low clearance clinic generally weekly.
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2.2. Which of the following staff members are involved in your MSRT and usually attend the MSRT meeting? Please tick all that apply in each column below |
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Answer options | Staff involved in MSRT | Staff who usually attend MSRT meeting | Response count |
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Consultant nephrologists | 52 | 45 | 58 |
Renal registrars | 40 | 30 | 44 |
Renal nurses | 51 | 43 | 56 |
Palliative care consultants | 20 | 5 | 21 |
Palliative care registrars | 3 | 1 | 4 |
Renal palliative care clinical nurse specialists | 19 | 10 | 20 |
Surgeons | 19 | 3 | 19 |
SAS grade doctors | 15 | 8 | 15 |
Diabetes nurses | 2 | 1 | 2 |
Social workers | 27 | 18 | 31 |
Occupational therapists | 7 | 2 | 7 |
Physiotherapists | 5 | 2 | 6 |
Dietitians | 46 | 31 | 51 |
Pharmacists | 30 | 14 | 34 |
Psychologists | 15 | 9 | 18 |
Pre-dialysis education providers | 44 | 29 | 46 |
Anaemia nurses | 43 | 27 | 45 |
Vascular access coordinators | 42 | 24 | 42 |
Counsellors | 16 | 7 | 16 |
Other | 4 | 2 | 5 |
Please specify | | | 9 |
Answered question | | | 58 |
Skipped question | | | 9 |
Haemodialysis and Home therapies nurses.
Spiritual team.
Transplant recipient coordinator and live donor coordinators.
Renal managers.
F1, ST2.
Meeting supported by clerical team.
Renal Technicians.
Renal gp.
Ward nurses.
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3. Do you run clinics for CKD patients in neighbouring hospitals? |
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Answer options | Response per cent | Response count |
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Yes | 88.1 | 59 |
No | 11.9 | 8 |
Answered question | 67 |
Skipped question | 0 |
Statistics | 3.1. How many neighbouring hospitals do you serve? | 3.2. In how many of the neighbouring hospitals do you have renal clinics? |
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n |
Valid | 58 | 58 |
Missing | 9 | 9 |
Median | 3.00 | 3.00 |
Standard deviation | 2.4 | 2.1 |
Range | 11 | 10 |
Minimum | 1 | 1 |
Maximum | 12 | 11 |
Percentiles |
25 | 1.00 | 1.00 |
50 | 3.00 | 3.00 |
75 | 5.00 | 4.25 |
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4. Do you have a pre-dialysis clinic or equivalent for managing patients approaching RRT? |
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Answer options | Response per cent | Response count |
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Yes | 83.6 | 56 |
No | 10.4 | 7 |
No, but we are planning to set up similar clinics | 6.0 | 4 |
Answered question | 67 |
Skipped question | 0 |
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4.1. Do all consultants who have CKD patients use the pre-dialysis clinic? |
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Answer options | Response per cent | Response count |
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Yes | 73.2 | 41 |
No | 26.8 | 15 |
Answered question | 56 |
Skipped question | 11 |
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4.1.1. Why don’t all consultants who have CKD patients use the pre-dialysis clinic? Please tick one |
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Answer options | Response per cent | Response count |
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Because some consultants think that long-term continuity of care by the same consultant is more important | 20.0 | 3 |
Because some consultants’ clinics are at one of a neighbouring hospitals and the pre-dialysis clinic is in the main hospital. They don’t want their patients to travel to the main hospital | 20.0 | 3 |
Other (please specify) | 60.0 | 9 |
Answered question | 15 |
Skipped question | 52 |
We are in the process of setting up formal pre-dialysis clinics in all areas but until this happens, there aren’t dedicated clinics although CKD pts access and see pre-dialysis counsellors, anaemia management, vascular access/PD nurses where appropriate and also patient counsellors when relevant.
Patients are seen by the advanced kidney care nurses for education, anaemia management, access referral, hepatitis B vaccination. Each AKC nurse is attached to one of the hospitals & the designated consultant(s). So patients approaching dialysis can be seen closer to home rather than having to travel to the two pre dx clinics at [unit name] (Covering East & West Kent). The designated clinics run weekly. Patients may return to general nephrology clinics at the other 4 satellite units at neighbouring hospitals if they chose to be seen closer to home.
Early CKD (up to eGFR 20ml/min) are seen in CKD or nephrology clinic under named consultants. Patients are then referred to Advanced Kidney Care (pre-dialysis) which may then be a different named consultant for continuity of care within pre-dialysis.
Both the above. Also practical issues related to transport.
There are differing models across our geographical patch.
Both of the above selected.
They have different clinic.
The pre-dialysis clinics are nurse led.
Because other members of MSRT cannot support all pre-dialysis patients attending at same clinic. Plus continuity valued.
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5. What percentage of the outpatients under follow up in your renal clinic, who are approaching dialysis, receive the following? |
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Answer options | ≤ 25% | 26–50% | 51–75% | 76–100% | Response count |
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Nurse-led education | 0 | 0 | 3 | 64 | 67 |
Home visit | 21 | 10 | 9 | 24 | 64 |
Trained counsellor/psychologist input | 51 | 10 | 2 | 2 | 65 |
Occupational therapist and/or social work input | 38 | 16 | 9 | 2 | 65 |
Answered question | 67 |
Skipped question | 0 |
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6. How is pre-dialysis education delivered in your unit? Please tick all that apply |
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Answer options | Response per cent | Response count |
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Consultant/registrar consultation | 86.6 | 58 |
DVD education materials to take home | 73.1 | 49 |
Written material to take home | 95.5 | 64 |
Translated (if appropriate) written material (except Welsh) | 41.8 | 28 |
Computer-based education programme | 31.3 | 21 |
Group session with other pre-dialysis patients | 76.1 | 51 |
Talk from a patient on conservative care | 13.4 | 9 |
Talk from a patient on centre HD | 58.2 | 39 |
Talk from a patient on home HD | 50.7 | 34 |
Talk from a patient on peritoneal dialysis | 61.2 | 41 |
Talk from a patient with functioning transplant | 50.7 | 34 |
Cultural/language-matched nurse educators | 16.4 | 11 |
Flexibility to allow extra education time for those who need it | 76.1 | 51 |
Visit to an HD unit | 95.5 | 64 |
Formal case-by-case MSRT discussion | 41.8 | 28 |
Other (please specify) | 32.8 | 22 |
Answered question | 67 |
Skipped question | 0 |
Working on translated information Formal case MSRT discussion for selected patients.
All patients plus families/carers are offered a 1 hour appt for CKD/RRT education, with our pre dx Nurse Specialist, when all RRT options are discussed and a Kidney Care Plan offered.
Dedicated pre-dialysis CNS [consultant nurse] team.
Home visit by CKD nurse.
One to one (nurse/patient) ASK clinic, a preliminary talk with an advanced kidney care nurse.
Main education providers pre-dialysis clinical nurse specialists.
Nurse educators.
Just beginning to use PDA’s some home visits social worker/counsellor talks and dietician.
Home Visits by pre-dialysis nurses and counsellors.
Predialysis nurse education.
One-to-one discussion/consultation with a Pre Dialysis Nurse and also follow up discussion/consultation. Appointments arranged around and to follow clinic review with consultant where possible to minimise clinic attendances for patients. This is not always possible due to the geographical area covered.
First contact for pre-dialysis education is usually via a home visit when all options are discussed by the nurse.
We have a peer support programme where patients can access other patients for support.
Cultural and health improvement offices available.
All patients get a home visit by educator/counsellor.
Nurse consultation.
1 : 1 WITH PREDIALYSIS SPECIALIST NURSES.
One to one education as per protocol by kidney failure support nurse. Visit to CAPD unit.
CKD nurse specialist.
We have formally established peer meetings if requested, though this would typically be away from the ‘medical’ clinic. It is usually possible to match modality if requested.
Renal unit open day 6/12ly with stands for all aspects of rrt, diet, social work, patient groups etc.
There is a renal nurse lead Dialysis education programme covering almost 99 percent of patients.
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7. Do you have a pre-dialysis education daya? |
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Answer options | Response per cent | Response count |
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Yes | 80.6 | 54 |
No | 19.4 | 13 |
Answered question | 67 |
Skipped question | 0 |
- a
Group session with other pre-dialysis patients.
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7.1. Which of the following topics are usually covered during the pre-dialysis education day? Please tick all that applya |
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Answer options | Response per cent | Response count |
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Types of dialysis | 98 | 52 |
Transplantation | 100 | 53 |
Conservative care | 85 | 45 |
Side effects | 85 | 45 |
Medicines | 87 | 46 |
Dietary restrictions | 100 | 53 |
Fluid balance | 89 | 47 |
CKD-related anaemia | 85 | 45 |
Renal bone disease | 74 | 39 |
Cardiovascular risk factors | 66 | 35 |
Sexual matters | 38 | 20 |
Psychological support | 79 | 42 |
Other (please specify) | 26 | 14 |
Answered question | 53 |
Skipped question | 14 |
- a
The paper survey had a Likert scale (never, rarely, occasionally, frequently, and always); however, in the web version we simplified it to ‘tick all that apply’. Regarding responses in the paper version, only items that were ticked for either frequently or always were counted as ticked.
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8. Do your consultants share responsibility for patients with each other? Please tick one |
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Answer options | Response per cent | Response count |
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Yes, they share responsibility for all patients | 27.3 | 18 |
No, they work on a named-patient basis | 28.8 | 19 |
They share responsibility for most patients but take a lead role for individual patients with particular needs | 30.3 | 20 |
Other (please specify) | 13.6 | 9 |
Answered question | 66 |
Skipped question | 1 |
Consultants and CNS’s [consultant nurses] have both dedicated patients caseloads and shared patient caseloads MDT ensures that patient cases are shared to ensure continuity of care when patients are in-patients.
Mix-all consultants have named patients but will see others e.g. for transplant workup. there is culture of sharing care and full MDT discussions. patients will move to a different consultant when modality changes.
Each consultant is assigned to a satellite unit, with responsibility for HD, non dx outpatients in that unit. Consultants also have areas of interest & are dedicated to each modality. All consultants cover inpatients on a rotational basis.
Most CKD patients have a particular consultant. They may move to speciality consultants if nearing ESRF or starting dialysis.
Leads for HD, PD, LCC [low clearance clinic], Tx . . . shared gen neph, wards and on call.
Consultant of the week cares for all in-patients, OP clinics are run on a named patient basis but Consultants do see other colleagues patients when necessary e.g. to cover leave or on-call.
Missing answer from paper version.
Share as in-patient.
Inpatients are shared (on-call person in charge). Outpatients are typically matched to a service or geographical location e.g. in centre dialysis, or clinic at x hospital.
Dialysis access clinic run by One consultant Transplant clinic run by one Consultant although all see some transplant pts in their clinic.
1. Availability of an alternative to dialysis
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1.1. Does your unit ever have patients with CKD5* where an active decision is made not to dialyse even when they are symptomatic? |
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Answer options | Response per cent | Response count |
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Yes | 98.5 | 66 |
No | 1.5 | 1 |
Answered question | 67 |
Skipped question | 0 |
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1.1.1. How does your unit follow up patients with CKD5 where a decision is made not to dialyse? Please indicate the approximate percentages followed up as specified below. Totals do NOT need to add up to 100% |
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Answer options | ≤ 25% | 26–50% | 51–75% | 76–100% | N/A | Response count |
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In a dedicated programme with its own clinic for those patients | 14 | 1 | 3 | 9 | 38 | 65 |
In a pre-dialysis clinic/low clearance clinic | 9 | 15 | 4 | 24 | 13 | 65 |
In a general nephrology clinic | 22 | 10 | 8 | 7 | 17 | 65 |
Patients are referred back to primary care and unit provides care in collaboration with GPs | 40 | 5 | 2 | 5 | 11 | 64 |
Other | 11 | 1 | 3 | 3 | 13 | 32 |
(Please specify and indicate percentage) | 16 |
Answered question | 66 |
Skipped question | 1 |
Of the 5 consultants, one has a monthly LCC [low clearance clinic] including CKM. I had a dedicated weekly LCC which has recently been disbanded (into my 2 general nephrology clinics) due to my taking on a home dialysis clinic also. Therefore, 4/5 consultants see their LCC and CKM patients in their gen neph clinics.
Our 2 renal community nurses visit our Conservative Care patients at home regularly and liaise with GPs and DNs to provide care.
Shared care with primary care is common.
50% managed at home by Consultant Nurse in partnership with primary care where appropriate.
Home visits.
Referred to palliative care consultant when symptomatic.
Currently no dedicated clinic to follow up patients who have opted for conservative management. The geographical area covered and the resources currently available make this difficult to implement.
Nurse specialist review at home (renal).
Patient choice between primary care and specialist clinics.
Dedicated clinic when e-GFR < 12.
Community based renal palliative sister.
Dependent on eGFR, home visits undertaken for review.
Home visit.
Conservative Care Nurse – Home Visits.
A patient may not wish to attend a clinic at MRI and will be followed up at a more local OP clinic or in collaboration with their GP.
Home visits contribute to the regular reviews.
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1.1.2. What words do you most commonly use in your unit when referring to the care of patients with CKD5 where a decision is made not to dialyse? Please tick one |
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Answer options | Response per cent | Response count |
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Conservative kidney management | 4.6 | 3 |
Conservative management | 46.2 | 30 |
Conservative care management | 12.3 | 8 |
Maximum conservative management | 3.1 | 2 |
Non-dialysis care | 3.1 | 2 |
Supportive care | 7.7 | 5 |
Palliative care | 0.0 | 0 |
Other (please specify) | 23.1 | 15 |
Answered question | 65 |
Skipped question | 2 |
Within ‘other’, 11 units indicated they used more than one terminology.
Conservative management and supportive care.
Conservative care management and supportive care.
Conservative management, supportive care, maximum conservative management.
More than one ticked (conservative kidney management, non-dialysis care, conservative management, conservative kidney management, palliative care).
Ticked more than one Conservative kidney management, Conservative management, Conservative care management, Maximum conservative management, Supportive care.
Ticked more than one non-dialysis care, conservative management, supportive care.
3 options ticked conservative kidney management, conservative management, supportive care.
Conservative management (Non-dialysis) Many terms used.
Have ticked five of the above options (Conservative kidney management, conservative management, non-dialysis care, supportive care, palliative care).
Three are ticked in post version (Conservative kidney management, conservative management, supportive care).
No single term. We have as many ‘don’t knows, see when we get there’ as ‘not for dialysis’.
Active supportive care.
I’m not sure the terminology here is important it’s the care that is provided that is important patients may need different care at different times and depending what other comorbidities are present i.e. may start off as max cons management and then move to palliative care sorry I don’t feel this question is appropriate all terms can be used . . .
Regular clinic care.
Conservative care.
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1.1.3. Do all consultant nephrologists follow the same practice regarding patients with CKD5 where a decision is made not to dialyse? |
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Answer options | Response per cent | Response count |
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Yes | 77.3 | 51 |
No | 22.7 | 15 |
Answered question | 66 |
Skipped question | 1 |
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1.1.3.1. How much do they differ? Please tick one |
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Answer options | Response per cent | Response count |
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Slightly | 66.7 | 10 |
Moderately | 33.3 | 5 |
Greatly | 0.0 | 0 |
Other (please specify how) | 0.0 | 0 |
Answered question | 15 |
Skipped question | 52 |
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1.1.3.2. How do they differ? |
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Answer options | Response count |
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| 4 |
Answered question | 4 |
Skipped question | 63 |
Some pts in whom a decision has been made for no dialysis aren’t always referred to conservative care nursing team but this is improving with better awareness.
Some are more likely to discharge to primary care and provide telephone advice if needed. Others will keep reviewing CKM patients until no longer feasible/patient dies.
Variable level of commitment to conservative care.
Different views on treatment plans and when to classify patients, and reviewing overall condition.
2. The development and implementation of conservative care in your unit
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2.1. Is there a written guideline for how to manage patients on conservative care (other than a palliative care/symptom control guideline)? |
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Answer options | Response per cent | Response count |
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Yes | 34.8 | 23 |
No, but in preparation | 27.3 | 18 |
No | 37.9 | 25 |
Answered question | 66 |
Skipped question | 1 |
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2.1.1. Which staff member(s) predominantly led the development of this policy? Please tick all that apply |
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Answer options | Response per cent | Response count |
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Consultant nephrologist | 70.0 | 28 |
Consultant in palliative care | 37.5 | 15 |
Renal nurse | 75.0 | 30 |
Palliative care nurse within the renal unit | 15.0 | 6 |
Palliative care nurse from community team/other hospital department | 12.5 | 5 |
Other (please specify) | 17.5 | 7 |
Answered question | 40 |
Skipped question | 27 |
Unit clinical psychologist.
Dialysis nurses/sisters from all 3 dialysis units [unit names], social worker, counsellor, dialysis nurse educator.
Consultant Nurse.
Renal palliative clinical nurse specialist.
Palliative healthcare assistant and palliative consultant nurse.
CASTE website.
Initially set up with dual palliative care/renal participation – now run by renal alone with good palliative care links and support.
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2.2. Is there a single person or team primarily responsible for conservative care in your unit? |
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Answer options | Response per cent | Response count |
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Yes | 66.2 | 43 |
No | 33.8 | 22 |
Answered question | 65 |
Skipped question | 2 |
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2.2.1. What is their position? Please tick all that apply |
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Answer options | Response per cent | Response count |
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Consultant nephrologist(s) | 58.1 | 25 |
Palliative care consultant(s) | 11.6 | 5 |
Nurse(s) | 79.1 | 34 |
Other (please specify) | 14.0 | 6 |
Answered question | 43 |
Skipped question | 24 |
McMillan Nurse Consultant.
Team effort for any care – palliative team supportive care consultant nurse specialist and consultant for development of . . . above plus palliative care consultant.
We have received input from Palliative care team.
Renal nurse specialist to add to nurses.
Team of consultant and three nurses to add to nephrologists and nurses.
Each area led by nephrologist and nurse specialist.
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2.3. Does your unit provide renal staff with formal training or education regarding conservative care? |
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Answer options | Response per cent | Response count |
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Yes | 50.0 | 33 |
No, in preparation | 18.2 | 12 |
No | 31.8 | 21 |
Answered question | 66 |
Skipped question | 1 |
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2.3.1. Approximately what percentage of the following staff members have received the training? |
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Answer options | ≤ 25% | 26–50% | 51–75% | 76–100% | N/A | Response count |
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Consultant nephrologists | 9 | 1 | 10 | 10 | 0 | 30 |
Renal registrars | 7 | 8 | 7 | 5 | 1 | 28 |
Renal nurses | 5 | 11 | 8 | 7 | 0 | 31 |
Diabetes nurses | 6 | 0 | 0 | 1 | 19 | 26 |
Social workers | 6 | 3 | 3 | 7 | 9 | 28 |
Occupational therapists | 6 | 0 | 0 | 2 | 19 | 27 |
Physiotherapists | 7 | 0 | 1 | 1 | 18 | 27 |
Dietitians | 5 | 3 | 5 | 6 | 8 | 27 |
Pharmacists | 6 | 3 | 1 | 6 | 10 | 26 |
Psychologists | 2 | 2 | 3 | 11 | 10 | 28 |
Pre-dialysis education providers | 3 | 1 | 2 | 22 | 2 | 30 |
Anaemia nurses | 3 | 2 | 2 | 15 | 8 | 30 |
Vascular access coordinators | 8 | 1 | 2 | 5 | 13 | 29 |
Counsellors | 3 | 0 | 2 | 8 | 14 | 27 |
Management/administrative staff | 10 | 0 | 0 | 2 | 15 | 27 |
Other | 1 | 0 | 1 | 3 | 5 | 10 |
(Please specify and indicate percentage) | 5 |
Answered question | 33 |
Skipped question | 34 |
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2.3.2. Why is formal training or education regarding conservative care not provided for your staff? Please tick all that apply |
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Answer options | Response per cent | Response count |
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Lack of funding | 38.1 | 8 |
Lack of time | 52.4 | 11 |
Lack of appropriate person to organise the training | 23.8 | 5 |
Consultants’ lack of interest in the training | 0.0 | 0 |
Clinical director’s lack of interest in the training | 0.0 | 0 |
Other staff members’ lack of interest in the training | 0.0 | 0 |
We do not need formal training as conservative care is an ingrained culture in the unit | 23.8 | 5 |
Other (please specify) | 42.9 | 9 |
Answered question | 21 |
Skipped question | 46 |
Availability of staff to allow staff time off to attend courses (lack of time?).
Pre-education for RRT always includes this option.
Some individuals trained if particularly keen.
Education to other members of the department has been provided informally by our pre dialysis nurse team. In 2010 an education project was funded by the National End of Life Care Network to provide education and training to the renal workforce in areas of end of life care. The project was led by a specialist palliative care nurse educator.
Nurses involved in discussing conservative care with patients have all either been to supportive care education days/conferences or received additional training with home palliative care teams.
This is honestly not something we have thought about until recently. We are about to set up Shared Decision Making clinics with MDT structure along the lines of Cancer care clinics.
Service has developed by evolution. Will likely consider formal training programme.
We have a small team and an excellent input from palliative care.
Not convinced we are failing these patients with our current practice – which isn’t the same as the derogatory ‘lack of interest’.
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2.4. How did each of the factors listed below influence the development of the conservative care programme in your unit? Please indicate if each of the factors below positively or negatively influenced the development of the conservative care programme |
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Answer options | Positively influenced | Negatively influenced | No effect | Response count |
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Frequency of late referrals | 12 | 6 | 43 | 61 |
Nephrologists’ attitudes towards conservative care | 51 | 5 | 8 | 64 |
Nurses’ attitudes towards conservative care | 57 | 1 | 6 | 64 |
Other unit staff’s attitudes towards conservative care | 38 | 2 | 22 | 62 |
Patient/family/carers’ attitudes towards conservative care | 45 | 3 | 17 | 65 |
Attitudes of people from different ethnicity/culture towards conservative care | 14 | 5 | 44 | 63 |
Availability of staff experienced in conservative care | 33 | 9 | 21 | 63 |
Availability of funding specifically for conservative care | 14 | 15 | 35 | 64 |
Payment by Results tariff for dialysis | 1 | 2 | 59 | 62 |
Other | 0 | 2 | 11 | 13 |
(Please specify) | 6 |
Answered question | 65 |
Skipped question | 2 |
Ethnic issues variable. Some positive, some negative. Not to mislead-the lack of staff availability (and funding) has meant that development of our programme has been slower.
Sorry but I find this question a bit odd unless I have misunderstood it. I would like to think that myself and my colleagues treat people in a conservative manner on an individual case basis and in a shared decision manner with the patient – patients are the influence for ‘conservative care’ in our unit . . . ?
Inadequate resources to staff a conservative programme.
CCG [clinical commissioning group] funding.
The nephrologists attitude balances out, though once a decision is made it is respected. The attitude is not obviously driven by religion, race or sex (in the nephrologist). The nurses attitudes are different. Some may exert a negative effect as they are uncomfortable with the discussion.
We don’t have a ‘programme’.
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2.5. In calendar year 2012, approximately how many CKD5 patients aged 75 and over were cared for by your renal service? (Please exclude patients with a failing kidney transplant) |
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Answer options | Response average | Response total | Response count |
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Please enter number | | | 65 |
Answered question | 65 |
Skipped question | 2 |
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2.5.1. Of those, how many were on conservative care and followed up in your unit? If you don’t know the number, please answer the next question instead |
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Answer options | Response average | Response total | Response count |
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Please enter number | | | 35 |
Answered question | 35 |
Skipped question | 32 |
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2.5.2. Of those, approximately what % were on conservative care and followed up in your unit? |
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Answer options | Response per cent | Response count |
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0% | 0.0 | 0 |
1–9% | 15.2 | 7 |
10–19% | 17.4 | 8 |
20–29% | 17.4 | 8 |
30–39% | 4.3 | 2 |
40–49% | 10.9 | 5 |
50–59% | 8.7 | 4 |
60–69% | 0.0 | 0 |
70–79% | 2.2 | 1 |
80–89% | 6.5 | 3 |
90–99% | 2.2 | 1 |
100% | 4.3 | 2 |
Don’t know, please tell us why not | 10.9 | 5 |
Answered question | 46 |
Skipped question | 21 |
Current CV IT system cannot easily give this info.
Because having received this survey late in the day I do not have time/opportunity to access the information however, I do know that he have a high number of patients on dialysis > 75 and using a shared decision methodology, a low number of patients who choose conservative care or whichever term you choose to use. We also have a number of patients that we do not ever expect to need to make that decision of whether to have dialysis or not as their kidney function and/or symptoms do not indicate the need to start however they die of other causes . . . arguably they are treated similarly as maximum medical management . . .
Only can determine we had 224 patients with eGFRs < 15 in 2012 and of those 66 patients were conservative care (30–39%).
Conservative care not recorded on renal IT system at present.
The number is a rough estimate. There is bias in the number on conservative care as they do not migrate. The majority of patients on conservative care are CKD4 and they are by no means restricted to the over 75’s.
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2.6. In 2012, how many patients aged 75 and over in your unit chose to have conservative care, became symptomatic of advanced CKD and did not have dialysis? |
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Answer options | Response per cent | Response count |
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Please enter number | | 41 |
If you don’t know, please tell us why not | | 26 |
Answered question | 65 |
Skipped question | 3 |
Not recorded.
Unknown.
Data not collected.
Not sure. 28 patients dies over 75 years on CKM in this timeframe.
Difficult to obtain, but very few change to active Rx; we have published our data.
No answer.
Sorry again due to lateness I have not had time to look at the numbers.
68 died with label of cons. but most not symptomatic, we don’t have those stats.
Patients decisions not entered on renal data base previously, new system records decisions with date.
Not recorded.
Have not looked at exact number over 75 yet.
Unfortunately this information is incomplete and not accurately collected in our Proton system.
Don’t collate this data.
Not entered.
Data for 2012 is not collected.
Data not routinely collected.
No available database.
Unable to specify.
Don’t have records.
Difficult to answer. They are all symptomatic to a certain degree.
Don’t record it.
No dedicated data base for conservative gp of patients.
Approx 8 – Sometimes it is a multisystem decline.
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2.7. Does your unit have staff whose time is specifically allocated for CKD5 patients on conservative care? |
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Answer options | Response per cent | Response count |
---|
Yes | 45.2 | 28 |
No | 54.8 | 37 |
Answered question | 65 |
Skipped question | 2 |
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2.7.1. How much time do the following staff have specifically allocated for CKD5 patients on conservative care? Please enter number of full-time equivalent (FTE) hours for each discipline. (e.g. If you have two nurses with 0.5 FTE, enter 1.0) |
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Answer options | Response per cent | Response count |
---|
Consultant nephrologists | 52 | 12 |
Renal registrars | 12 | 3 |
Renal nurses | 64 | 16 |
Diabetes nurses | 0 | 0 |
Social workers | 32 | 7 |
Occupational therapists | 12 | 2 |
Dietitians | 40 | 9 |
Pharmacists | 16 | 3 |
Psychologists | 24 | 5 |
Pre-dialysis education providers | 40 | 9 |
Anaemia nurses | 4 | 6 |
Vascular access coordinators | 0 | 0 |
Counsellors | 12 | 2 |
Management/administrative staff | 8 | 2 |
Other (please specify and enter number of FTE hours) | 12 | 3 |
Answered question | 25 |
Skipped question | 42 |
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2.8. Do you have clinics exclusively for CKD5 conservative care patients? |
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Answer options | Response per cent | Response count |
---|
Yes | 23.1 | 15 |
No | 76.9 | 50 |
Answered question | 65 |
Skipped question | 2 |
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2.8.1. How often do you run conservative care clinics in your renal unit and outside the main renal unit? Please tick one for each row |
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Answer options | Once a week | Once a fortnight | Once a month | Other | N/A | Response count |
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In your renal unit | 7 | 1 | 3 | 2 | 1 | 14 |
Outside the main renal unit | 0 | 2 | 3 | 1 | 6 | 12 |
If other is chosen please give details | 5 |
Answered question | 15 |
Skipped question | 52 |
See text from Q15.
Every 5 weeks.
At two overreach sites and in patient own home by renal team.
Every six weeks.
In reality there is flexibility and a mixed economy. There are patients whose needs are suitable who we will return to a local gen nephrology clinic if geographically preferable for example.
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2.8.2 Where are CKD 5 patients receiving conservative care most commonly seen or followed up by clinical staff? Please tick one |
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Answer options | Response per cent | Response count |
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In a general nephrology clinic | 22.4 | 11 |
In a pre-dialysis clinic/low clearance clinic | 44.9 | 22 |
In own home by renal team | 6.1 | 3 |
In own home by GP/community team | 8.2 | 4 |
At GP surgery | 0.0 | 0 |
Telephone clinics run by renal unit | 0.0 | 0 |
Other (please specify) | 18.4 | 9 |
Answered question | 49 |
Skipped question | 18 |
An equal combination of general nephrology, pre dx, & at home.
All above.
In a general nephrology clinic, In a pre-dialysis clinic/low clearance clinic, In own home by renal team, In own home by GP/community team are all ticked.
Discharged to GP. CNS [consultant nurse] joint cares for through home visits.
All of the above.
Ticked more than one (pre-dialysis, own home by GP/community team, follow up phone calls from LCC [low clearance clinic] nurses).
Ticked more than one (pre-dialysis, own home by renal team).
Two given (in a general nephrology clinic and in own home by renal team).
Two ticked (pre-dialysis and in own home by GP/community team).
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2.9. How often are your CKD5 conservative care patients most commonly seen? Please tick one for each row |
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Answer options | Weekly | Monthly | 3-monthly | 6-monthly | Other | Response count |
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Symptomatic patients | 4 | 34 (56%) | 10 | 0 | 13 | 61 |
Asymptomatic patients | 0 | 2 | 43 (69%) | 8 | 9 | 62 |
If other is chosen please give details | 20 |
Answered question | 63 |
Skipped question | 4 |
Individualised.
It depends on the individual patient needs.
As required & care shared with GP & Hospice team.
As required.
As needed per individual.
Symptomatic patients seen by palliative care weekly or daily depending on symptoms.
Monthly appointments however regular telephone contact in between with patient/carer to monitor symptoms. Asymptomatic pt’s two monthly.
2 monthly.
Frequency will be influenced by their comorbidities and transport etc. difficulties Symptomatic patients likely seen every 2 months or so.
Patients managed in community. Very infrequently patients come back for a single review for symptom control. Over 90% patients do not want to come back to clinic when invited.
As required.
6 weekly.
6–8 weeks.
If symptomatic patients reviewed in community by primary/secondary care For asymptomatic 2 monthly.
2 months.
As needed by palliative care.
If asymptomatic – seen back in standard low clearance OP clinic.
Dependant entirely on need, frailty, symptom burden, distance etc. Weekly not uncommon in response to a change in symptoms not uncommon.
Depending on individual circumstances 2 to 3 monthly intervals.
Obviously more frequently as they become symptomatic.
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2.10. What are the key components of conservative care provided to patients in your renal service? Please tick all that apply |
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Answer options | Response per cent | Response count |
---|
Clinic consultations | 93.8 | 61 |
Blood results review | 90.8 | 59 |
The provision of EPO (erythropoietin) and iron therapy | 100.0 | 65 |
Symptom assessment and management | 100.0 | 65 |
Prescription of medication for renal symptoms (fluid retention, itching, etc.) | 96.9 | 63 |
Telephone support for patients | 87.7 | 57 |
Telephone support for carers | 78.5 | 51 |
Home visits by renal staff | 55.4 | 36 |
Dietary advice | 98.5 | 64 |
Social circumstances review by social workers attached to the renal unit or hospital | 63.1 | 41 |
Advice on home environment by occupational therapist attached to the renal unit or hospital | 26.2 | 17 |
Advanced care planning | 76.9 | 50 |
Communication with primary care team for Gold Standards Framework approach | 80.0 | 52 |
Psychological support | 58.5 | 38 |
Other (please specify) | 10.8 | 7 |
Answered question | 65 |
Skipped question | 2 |
Occasional practical help provided.
Communication with hospice or any other service/personnel as required.
Liaison with GPs to advice when patients unable to attend clinic.
Advanced care planning in pilot scheme at the moment Home visits not routine but could be offered if required.
In the process of developing an advanced care planning document.
Palliative care or community matron involvement as necessary.
Not sure what the Gold Standards Framework is – we certainly talk to GP’s!
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2.11. Do you have any funding dedicated to providing conservative care in your renal service? |
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Answer options | Response per cent | Response count |
---|
Yes | 15.4 | 10 |
No | 84.6 | 55 |
Answered question | 65 |
Skipped question | 2 |
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2.11.1. Is the funding part of routine NHS income or from non-NHS sources? Please tick one |
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Answer options | Response per cent | Response count |
---|
Routine NHS income | 70.0 | 7 |
Non-NHS sources | 10.0 | 1 |
Both | 20.0 | 2 |
Answered question | 10 |
Skipped question | 57 |
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2.11.2. How much annual funding was dedicated to providing conservative care in the 2011/12 financial year (April 2011–March 2012)? Please enter number |
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Breakdown of the responses regarding funding |
---|
Funding sources | Amount |
---|
Routine NHS income | £29,464 |
£101,300 |
£69,959 |
£40,000 |
Money for 0.8 WTE nurses |
No response |
No response |
Non-NHS sources | Part of palliative care consultant’s salary |
Both | 0.5 band 7 nurse |
£3942 |
Statistics |
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Overall £ |
n |
Valid | | 5 |
Missing | | 60 |
Mean | | 48,333 |
Median | | 40,000 |
Standard deviation | | 38,050.755 |
Range | | 97,358 |
Minimum | | 3942 |
Maximum | | 101,300 |
Percentiles |
25 | | 15,203 |
50 | | 40,000 |
75 | | 85,629.50 |
3. Discussing conservative care with patients
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3.1. In your unit, is the option of conservative care discussed with all CKD5 patients aged 75 years and over? (excluding emergency patients) |
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Answer options | Response per cent | Response count |
---|
Yes | 86 | 56 |
No | 14 | 9 |
I don’t know (please tell us why not) | 0 | 0 |
Answered question | 65 |
Skipped question | 2 |
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3.1.1. If the option of conservative care is not discussed with all CKD5 patients aged 75 years and over, please tell us how the decision is made whether or not to discuss conservative care with a patient? Please tick all that apply |
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Answer options | Response per cent | Response count |
---|
Consultant nephrologist in charge of patient decides alone | 33.3 | 3 |
Consultant nephrologist in charge of patient decides with input from other consultants | 33.3 | 3 |
Consultant nephrologist in charge of patient decides with input from other professionals during an MSRT meeting | 44.4 | 4 |
Clinical nurse specialist/consultant nurse in charge of patient decides alone | 0.0 | 0 |
Clinical nurse specialist/consultant nurse in charge of patient decides with input from consultants | 22.2 | 2 |
Clinical nurse specialist/consultant nurse in charge of patient decides with input from other professionals during an MSRT meeting | 11.1 | 1 |
The decision-making is a reactive process during the consultation | 33.3 | 3 |
Only if patient/carer asks about alternatives to dialysis | 0.0 | 0 |
Other (please specify) | 0.0 | 0 |
Answered question | 9 |
Skipped question | 57 |
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3.2. Which of the following factors are likely to influence staff when contemplating the suitability of conservative care for a patient? Please indicate how strongly each would influence a decision to discuss conservative care with a patient/carer. Please answer on behalf of all staff members |
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Answer options | Not at all | Very little | Little | Somewhat | Strongly | Very strongly | Response count |
---|
Response to the ‘surprise’ question | 5 | 7 | 8 | 12 | 23 | 9 | 64 |
20 | 12 | 32 |
Frailty | 0 | 0 | 3 | 4 | 37 | 21 | 65 |
3 | 4 | 58 |
Extent and severity of comorbidities | 0 | 0 | 1 | 3 | 34 | 27 | 65 |
1 | 3 | 61 |
Cognitive status | 0 | 0 | 3 | 14 | 25 | 23 | 65 |
3 | 14 | 48 |
Functional status | 0 | 0 | 3 | 10 | 35 | 17 | 65 |
3 | 10 | 52 |
Uraemic symptoms | 13 | 6 | 16 | 20 | 9 | 1 | 65 |
35 | 20 | 10 |
Rate of decline of kidney function | 14 | 11 | 14 | 16 | 8 | 2 | 65 |
39 | 16 | 10 |
Social support | 10 | 9 | 20 | 20 | 5 | 1 | 65 |
39 | 20 | 6 |
Distance from dialysis unit to home | 21 | 10 | 17 | 14 | 2 | 0 | 64 |
49 | 14 | 2 |
Patient’s current quality of life | 0 | 2 | 2 | 11 | 35 | 15 | 65 |
4 | 11 | 50 |
Patient preference for conservative care | 0 | 0 | 0 | 0 | 18 | 47 | 65 |
0 | 0 | 65 |
Carer preference for conservative care | 4 | 8 | 12 | 28 | 10 | 2 | 64 |
24 | 28 | 12 |
Consultant preference for conservative care | 3 | 4 | 16 | 31 | 9 | 2 | 65 |
23 | 31 | 11 |
Other | 1 | 0 | 0 | 0 | 0 | 2 | 3 |
(Please specify and rate) | 2 |
Answered question | 65 |
Skipped question | 2 |
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3.3. When is the option of conservative care most commonly first raised with a patient? Please tick one |
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Answer options | Response per cent | Response count |
---|
When estimated GFR reaches a certain level | 23.1 | 15 |
When they are referred to the pre-dialysis/low clearance clinic | 56.9 | 37 |
When dialysis access needs to be performed | 1.5 | 1 |
When symptoms start | 0.0 | 0 |
At a specific time prior to the anticipated start of dialysis | 9.2 | 6 |
Other (please specify) | 9.2 | 6 |
Answered question | 65 |
Skipped question | 2 |
Case by case differs Usually raised at the point of RRT education so usually at eGFR < 20–25.
A combination of the above depending on the individual patient.
When seen in Education Clinic to discuss RRT options.
When assessment suggests progression to end-stage is likely. Conservative care discussed along with all modalities for RRT with all patients.
At the time decision is made to refer to pre-d or not (not referred if adamant they don’t want it, referred if undecided). so 12 to 18 months pre-d.
Not clearly one trigger. If a patient is unlike to reach esrf, then we don’t talk about it too much, on other patients we may raise it years before when the eGFR is around 20, i.e. if there is a change of AKI putting them onto dialysis.
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3.3.1. Please specify estimated GFR |
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Statistics |
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eGFR |
---|
n |
Valid | 15 |
Missing | 50 |
Mean | 18.8667 |
Standard error of mean | 0.52433 |
Median | 20.0000 |
Standard deviation | 2.03072 |
Variance | 4.12400 |
Minimum | 15.0000 |
Maximum | 20.0000 |
Percentiles |
25 | 19.0000 |
50 | 20.0000 |
75 | 20.0000 |
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3.3.2. Please specify when (months) |
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Statistics |
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Months |
---|
n |
Valid | 6 |
Missing | 59 |
Mean | 8.5000 |
Standard error of mean | 1.62788 |
Median | 9.0000 |
Standard deviation | 3.98748 |
Variance | 15.900 |
Minimum | 3.00 |
Maximum | 12.00 |
Percentiles |
25 | 5.2500 |
50 | 9.0000 |
75 | 12.0000 |
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3.4. How are patients’ family/carers involved in decision making about conservative care? Please tick all that apply |
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Answer options | Response per cent | Response count |
---|
They are invited to patient education day | 67.7 | 44 |
They are encouraged to attend clinics with patient | 95.4 | 62 |
They are involved in home visits | 64.6 | 42 |
They are involved when patient is revisited regarding conservative care decision | 76.9 | 50 |
Other (please specify) | 4.6 | 3 |
Answered question | 65 |
Skipped question | 2 |
They are involved if patient wishes them to be involved. We don’t currently invite carers/family but they are always welcome.
Telephone advice/information from renal specialist nurses on request.
Encouraged to attend conservative care clinic.
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3.5. Do any renal staff members use practical tools (see below for examples) when discussing the option of conservative care with a patient? |
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Answer options | Response per cent | Response count |
---|
Yes | 83.1 | 54 |
No | 16.9 | 11 |
Answered question | 65 |
Skipped question | 2 |
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3.5.1. What do they use when discussing the option of conservative care with a patient? Please tick all that apply |
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Answer options | Response per cent | Response count |
---|
Booklets/handouts from national organisation(s) | 81.5 | 44 |
Booklets/handouts written by own renal unit staff | 61.1 | 33 |
DVDs from national organisations(s) | 40.7 | 22 |
NHS Right Care Patient Decision Aid | 29.6 | 16 |
Other (please specify) | 13.0 | 7 |
Answered question | 54 |
Skipped question | 13 |
They get a talk on CM at the educational evenings which includes another video about CM. They get the home visit which is when CM is discussed. They get follow up letters which reminds them of the option of CM and asks if they want to chat about it further. Patient decision aids just started to be used.
Conservative care booklet under construction in unit.
In house dvd.
Locally produced patient decision guide.
In-house DVD.
Visits to dialysis units to see patients on dialysis 2. pre-dialysis workshop to see equipment i.e. mannequins with access 3. meet with expert patients at patient education events.
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3.6. If a decision is made not to have dialysis, where is this information recorded? Please tick all that apply |
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Answer options | Response per cent | Response count |
---|
Medical notes | 96.9 | 63 |
Renal database | 90.8 | 59 |
GP database | 47.7 | 31 |
Out of hours (ambulance service) database | 16.9 | 11 |
Other (please specify) | 18.5 | 12 |
Answered question | 65 |
Skipped question | 2 |
Breakdown of the responses above (showing all how each database was used in conjunction with others) |
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Medical notes and renal database | 33.8 | 22 |
Medical notes, renal database, and GP database | 24.6 | 16 |
Medical notes, renal database, and other | 10.8 | 7 |
Medical notes, renal database, GP database, and out of hours database | 9.2 | 6 |
Medical notes and GP database | 6.2 | 4 |
Medical notes, renal database, GP database, out of hours database, and other | 4.6 | 3 |
Medical notes, renal database, and out of hours database | 3.1 | 2 |
Medical notes | 3.1 | 2 |
Renal database and GP database | 1.5 | 1 |
Medical notes, renal database, GP database, and other | 1.5 | 1 |
Renal database and other | 1.5 | 1 |
Answered question | 65 |
Skipped question | 2 |
ACP document and renal care plan document.
GPs are always informed-and assume they record on their database but this isn’t audited; out of hours service alerted when a DNR [do not resuscitate] order signed.
GP informed.
GP’s informed and asked to add to their database/tell out of hours etc. but we don’t check its done.
Letters written to GP following decision. Asked to add to Gold Framework Register when clinically indicated.
Also usually documented In letters to GP following clinic review.
Registered on Devon wide electronic end of life register (available to GPs/ambulance/out of hours service) when EOL [end-of-life] care discussed.
Nursing notes.
GP informed by letter.
Palliative Care Register.
Nurses notes.
Communicated to GP +/- suggestion to list on palliative care register.
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3.7. If a decision is made not to have dialysis, is this decision reviewed at any time? |
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Answer options | Response per cent | Response count |
---|
Yes | 100 | 65 |
No | 0 | 0 |
Answered question | 65 |
Skipped question | 2 |
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3.7.1. When is the decision reviewed? |
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Answer options | Response count |
---|
| 64 |
Answered question | 64 |
Skipped question | 3 |
The table below was made by grouping the text answers to Question 3.7.1.
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Answer options | Response per cent | Response count |
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Clinic visit | 67.2 | 43 |
On patient’s/carer’s request | 14.1 | 9 |
When patient becomes symptomatic | 6.2 | 4 |
Others | | |
Answered question | 64 |
Skipped question | 3 |
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3.8. Do patients who decide not to have dialysis ever change their mind and start dialysis? |
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Answer options | Response per cent | Response count |
---|
Yes | 98.5 | 63 |
No | 0 | 0 |
Answered question | 63 |
Skipped question | 4 |
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3.8.1. How frequently is the change of mind due to the following reasons? Please indicate how frequently each of the reasons listed below cause the change of mind |
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Answer options | Never | Very rarely | Rarely | Occasionally | Frequently | Very frequently | Response count |
---|
Because patients change their mind after having had longer to think about their decision | 2 | 9 | 14 | 32 | 5 | 0 | 62 |
25 | 32 | 5 |
Because a patient’s family wants them to have dialysis and a patient agrees | 0 | 9 | 6 | 38 | 8 | 1 | 62 |
15 | 38 | 9 |
Because patients are acutely admitted to hospital and dialysis is started without time for a full discussion between family and clinical team | 6 | 9 | 16 | 21 | 4 | 5 | 61 |
31 | 21 | 9 |
Because patients present unconscious without having recorded their wishes in writing and the family insist on dialysis | 14 | 16 | 19 | 10 | 2 | 0 | 61 |
49 | 10 | 2 |
Because patients have symptoms that cannot be controlled with conservative treatment | 12 | 9 | 12 | 21 | 5 | 2 | 61 |
33 | 21 | 7 |
Other | 1 | 0 | 0 | 4 | 4 | 0 | 9 |
(Please specify) | 13 |
Answered question | 62 |
Skipped question | 5 |
Patient becomes symptomatic in some way.
Not ready to die.
Patients get scared and life becomes very precious when they actually face their own mortality.
Patients think they don’t want dialysis until actually comes to it or death + basically refuse to make decision.
Some people leave decision until the point they need dialysis.
Most frequently patients change their minds when they start to feel unwell – the most common situation is an inability on the patient’s part to accept the need for dialysis until life threatening symptoms develop.
Patients say they don’t want dialysis but then change their minds when symptomatic and faced with the reality of uraemia/death.
Patient changes mind. Doesn’t like the idea of RRT, but when becomes symptomatic realises decline is now imminent and wants RRT.
Fear of dying when the reality hits home.
When confronted with the prospect of dying within weeks or months, some change their minds about dialysis.
Some patients just change their mind. This has nothing to do with the length of time they have had to make their decision. Some patients will not make a decision about having dialysis and say they will only have it if it is absolutely necessary and refuse to have access formed, they are hard to classify as either pre dialysis or conservative management. They allow us to manage symptoms but not prepare for dialysis.
Acute admission + AKI and patient then chooses dialysis above death – this is very common, understandably and not to be discouraged.
Not enough to comment. Usually because the ignorably theoretical has turned into unignorable reality.
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3.9. Is vascular access ever created for patients who have opted for conservative care? |
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Answer options | Response per cent | Response count |
---|
Yes | 15.4 | 10 |
No | 84.6 | 55 |
Answered question | 65 |
Akipped question | 2 |
4. Working with primary care and general practitioners
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4.1. Once a decision has been made that a patient aged 75 years and over with CKD5 will not have dialysis, how are GPs involved in their care? Please tick one |
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Answer options | Response per cent | Response count |
---|
Patients are primarily kept under the care of the renal unit with little GP involvement | 11.3 | 7 |
Patients are referred back to GPs but care of patients is shared between GPs and the renal unit (e.g. patients are seen by GPs who liaise with the renal unit regarding renal symptom control) | 19.4 | 12 |
Patients are referred back to GPs and cared for under primary care only | 0.0 | 0 |
Mix of all three as it varies between nephrologists | 14.5 | 9 |
Mix of all three as it varies by patient/patient preference | 47.7 | 31 |
Other (please specify) | 9.2 | 6 |
Answered question | 65 |
Skipped question | 2 |
Renal unit continues to care for patient but GP and palliative teams informed, so that as symptom burden increases, there are increasing inputs form primary and palliative care.
Mix of approaches depending on the patient and the individual GP . . . but the GP would be informed of the decision in writing.
Primarily remain under the care of renal team with involvement from GP, community nurses & Hospice as required.
Under GP, Conservative Care CNS [consultant nurse] liaises and is available if symptomatic and/or needs IV Iron/Epo.
Generally care is shared between renal unit and primary care agencies.
Depends on the reasons for decision. If GFR 14 and patient dying of cancer, back to GP. If GFR 10, anaemia and low calcium but otherwise OK, we’ll do most of it. if GFR 4 and symptomatic of uraemia, with no other co-morbs, we’ll share palliative type care with GP or palli care team.
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4.2. What is the role of GPs in the management of CKD5 patients receiving conservative care? Please tick all that apply |
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Answer options | Response per cent | Response count |
---|
GPs liaise with the renal unit for specialist support | 90.8 | 59 |
GPs arrange and interpret blood tests | 26.2 | 17 |
GPs arrange blood tests but liaise with renal unit for their interpretation | 52 | 34 |
GPs check patients’ medication | 52.3 | 34 |
GPs regularly (not on demand) assess patients in the GP surgery | 13.8 | 9 |
GPs regularly (not on demand) assess patients via home visits | 20.0 | 13 |
GPs/primary care staff provide/organise palliative care support at the end of life | 67.7 | 44 |
GPs discuss ACP with patients | 26.2 | 17 |
Other (please specify) | 18.5 | 12 |
Answered question | 65 |
Skipped question | 2 |
GP involvement variable-not able to give a definite answer.
A mixture of approaches.
We ask for patient’s to be placed on their GSF and keep a record of these patients ourselves.
All of the above possible.
Primary and secondary care work collaboratively to manage pt’s effectively.
Gps take their cue from patient wishes and consultant discussion.
Also pre dialysis specialist nurses liaise with GPs/primary care staff regarding the provision and organisation of palliative care support and provide information and advice on symptom management.
Renal/CKD organise bloods, palliative care referral and home visits.
GPs sometimes assess patients either in the pt’s home or in the GP Surgery.
District nurses, community matron or long term conditions teams involved also in ACP.
Most patients choose to stay under the care (?) of the renal unit with GPs providing blood tests (moved to GPs arrange blood tests but liaise with renal unit for their interpretation).
The list typifies the attitude of the unit to these patients. That they remain under our care. It does not suggest that primary care cannot and does not provide the full range of interventions in some patients. We see ACP as our responsibility though clearly many patients will talk to their GPs.
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4.3. Do you provide GPs and/or their practice team with information or advice regarding the treatment of CKD5 patients receiving conservative care? |
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Answer options | Response per cent | Response count |
---|
Yes | 87.7 | 57 |
No | 12.3 | 8 |
Answered question | 65 |
Skipped question | 3 |
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4.3.1. What do you provide to GPs regarding the treatment of CKD5 patients receiving conservative care? Please tick all that apply |
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Answer options | Response per cent | Response count |
---|
Verbal advice | 80.7 | 46 |
Written advice/guidelines | 96.5 | 55 |
Educational meetings | 31.6 | 18 |
Other (please specify) | 15.8 | 9 |
Answered question | 57 |
Skipped question | 10 |
Coordination between palliative teams in secondary care and GPs.
Currently by letter but leaflet in preparation.
Email advice.
We usually write a letter explaining the likely course of the patient’s condition, symptoms commonly encountered and management advice.
Tell re Renal LPC.
Email help.
E-mail advice service.
As needed for that patient.
Renal page on local cancer care website.
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4.3.2. Please tell us why information/advice regarding conservative care is not provided to GPs and/or their practice team. Please tick all that apply |
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Answer options | Response per cent | Response count |
---|
Lack of time | 62.5 | 5 |
Lack of funding | 25.0 | 2 |
Opinion of consultants | 12.5 | 1 |
Opinion of clinical directors | 0.0 | 0 |
Opinion of other staff members | 0.0 | 0 |
GPs do not wish to have any information/advice from the renal unit | 0.0 | 0 |
Other (Please specify) | 37.5 | 3 |
answered question | | 8 |
skipped question | | 59 |
Breakdown of responses to Question 4.3.2 |
---|
Lack of time | 38 | 3 |
Lack of time and funding | 12 | 1 |
Lack of time, funding, and opinion of consultants | 12 | 1 |
Other | 38 | 3 |
Total | 100 | 8 |
Information regarding this mostly provided by the palliative care physician and services which are embedded in the renal unit, but act independent of the renal unit outside hospitals.
No comment provided by respondent.
Not sure what you mean. We would inform individual GPs when they have a patient in that situation. No general GP info programme.
5. End-of-life care
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5.1. Does your unit have a written guideline for renal end of life care? |
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Answer options | Response per cent | Response count |
---|
Yes | 55.4 | 36 |
No, but in preparation | 16.9 | 11 |
No | 27.7 | 18 |
Answered question | 65 |
Skipped question | 2 |
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5.2. Do you identify conservative care patients approaching end of life through use of a register? |
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Answer options | Response per cent | Response count |
---|
Yes | 55.4 | 36 |
No | 44.6 | 29 |
Answered question | 65 |
Skipped question | 2 |
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5.2.1. How likely are the following factors to influence a decision to add a patient to the end of life register? Please indicate how strongly each of the factors listed below influence this decision |
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Answer options | Not at all | Very little | Little | Somewhat | Strongly | Very strongly | Response count |
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Surprise question | 3 | 1 | 1 | 4 | 15 | 11 | 35 |
5 | 4 | 26 |
Estimated GFR level | 1 | 4 | 1 | 10 | 13 | 6 | 35 |
6 | 10 | 19 |
Measured GFR level | 10 | 7 | 0 | 6 | 4 | 4 | 31 |
17 | 6 | 8 |
Comorbidities | 0 | 1 | 1 | 6 | 19 | 8 | 35 |
2 | 6 | 27 |
Frailty | 0 | 0 | 0 | 4 | 19 | 12 | 35 |
0 | 4 | 31 |
Unexpected weight loss | 0 | 2 | 3 | 8 | 15 | 7 | 35 |
5 | 8 | 22 |
Quality of life | 0 | 1 | 2 | 5 | 19 | 8 | 35 |
3 | 5 | 27 |
Symptoms | 1 | 0 | 0 | 6 | 17 | 11 | 35 |
1 | 6 | 28 |
Frequent hospitalisation | 0 | 0 | 2 | 3 | 15 | 15 | 35 |
2 | 3 | 30 |
Other | 0 | 0 | 0 | 1 | 2 | 2 | 5 |
(Please specify and rate) | 5 |
Answered question | 36 |
Skipped question | 31 |
Functional status and change thereof.
Low albumin high POS-s score.
Functional status.
Patient request running out of access.
Repeated question, once maximum conservative care is decided upon then added to register.
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5.3. Is ACP used in end of life care by renal staff? |
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Answer options | Response per cent | Response count |
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Yes | 78.5 | 51 |
No | 21.5 | 14 |
Answered question | 65 |
Skipped question | 3 |
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5.3.1. Who is involved in advance care planning in your unit? Please tick all that apply |
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Answer options | Response per cent | Response count |
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Consultant nephrologist(s) | 80.4 | 41 |
Nurse(s) | 94.1 | 48 |
Palliative care specialist(s) | 49.0 | 25 |
Social worker(s) | 31.4 | 16 |
Counsellor(s)/psychologist(s) | 23.5 | 12 |
Other (please specify) | 13.7 | 7 |
Answered question | 51 |
Skipped question | 16 |
Breakdown of responses to Question 5.3.1 |
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Consultant nephrologist(s) and nurse(s) | 25 | 13 |
Consultant nephrologist(s), nurse(s) and palliative care consultant(s) | 16 | 8 |
Consultant nephrologist(s), nurse(s), palliative care consultant(s), social worker(s) and counsellor(s) | 12 | 6 |
Consultant nephrologist(s), nurse(s), palliative care consultant(s), and social worker(s) | 6 | 3 |
Other combinations | 41 | 21 |
Total | 100 | 51 |
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5.4. Have any of your staff had any training in palliative/end of life care specifically for renal patients? Please tick one |
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Answer options | Response per cent | Response count |
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Yes, everyone has | 3.1 | 2 |
Yes, the majority of the staff have | 10.9 | 7 |
Yes, about half of the staff have | 14.1 | 9 |
Yes, but only the small number of the staff have | 60.9 | 39 |
No | 10.9 | 7 |
Answered question | 64 |
Skipped question | 3 |
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5.5. With which services does your unit liaise for patients receiving conservative care approaching end of life? Please tick all that apply |
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Answer options | Response per cent | Response count |
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Specialist palliative care services within the hospital | 90.8 | 59 |
Specialist palliative care services from local hospice | 78.5 | 51 |
Specialist palliative care services in the community (e.g. Macmillan nurses) | 84.6 | 55 |
Primary care team | 89.2 | 58 |
None | 0.0 | 0 |
Other (please specify) | 6.2 | 4 |
Answered question | 65 |
Skipped question | 2 |
Marie Curie nurses.
Renal pt counsellors often help with special funding applications and others in individual patients e.g. heart failure support team, dementia, head injury.
Specialist nurses in heart failure & diabetes.
Expect primary care to get in local comm services as needed.
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5.5.1. Where do patients receive these services? Please tick all that apply |
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Answer options | Response per cent | Response count |
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Within the hospital as inpatients | 81.5 | 53 |
Within the hospital as outpatients | 58.5 | 38 |
At home | 90.8 | 59 |
At hospice where patient is admitted at end of life | 84.6 | 55 |
At GP practice | 50.8 | 33 |
Other (Please specify) | 4.6 | 3 |
Answered question | 65 |
Skipped question | 2 |
Nursing homes with palliative support.
Depends on patients preference, especially preferred place of care for patients at end of life.
Our surrounding DGHs and cottage hospitals (are they still called that).
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5.5.2. What services do they provide for renal patients receiving conservative care in your unit? Please tick all that apply |
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Answer options | Response per cent | Response count |
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They help to write guidelines on how to treat patients receiving conservative care | 32.3 | 21 |
They provide symptom management at the end of life | 93.8 | 61 |
They support patients at home out of hours | 83.1 | 54 |
They discuss ACP with patients | 64.6 | 42 |
Admission to the hospice as required | 80.0 | 52 |
Other (please specify) | 10.8 | 7 |
Answered question | 62 |
Skipped question | 3 |
Palliative specialists rarely involved.
I didn’t understand this question.
Palliative care team have written guidelines on symptom control.
Home visits by palliative care consultant as required.
Try to avoid hospital admission with appropriate support where possible.
Shared care with GPS.
Tend to be advanced symptoms in the community.
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5.6. Do you provide palliative care specialists with training or advice regarding the management of renal patients? |
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Answer options | Response per cent | Response count |
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Yes | 64.6 | 42 |
No | 35.4 | 23 |
Answered question | 65 |
Skipped question | 2 |
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5.6.1. What do you provide? Tick all that apply |
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Answer options | Response per cent | Response count |
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Verbal advice | 83.3 | 35 |
Written advice/guidelines | 57.1 | 24 |
Educational meetings | 52.4 | 22 |
Other (please specify) | 14.3 | 6 |
Answered question | 42 |
Skipped question | 25 |
Middle grade training.
Liaise on medication prescription.
Joint mortality meetings.
They attend and learn in renal clinics.
3 monthly MDT.
Training for pallitive care trainees.
6. The evaluation of the provision of conservative care in your unit
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6.1. Is the quality of conservative care provided in your unit regularly evaluated? |
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Answer options | Response per cent | Response count |
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Yes | 38.5 | 25 |
No | 61.5 | 40 |
Answered question | 65 |
Skipped question | 2 |
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6.1.1. What measures or information do you use? Please tick all that apply |
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Answer options | Response per cent | Response count |
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Symptoms | 76.0 | 19 |
Survival | 64.0 | 16 |
Hospitalisation | 56.0 | 14 |
Quality of life | 64.0 | 16 |
Carer burden | 24.0 | 6 |
Place of death | 88.0 | 22 |
Survey with patients/carers about their experience of conservative care | 36.0 | 9 |
Other (please specify) | 16.0 | 4 |
Answered question | 25 |
Skipped question | 42 |
EOL [end-of-life] meetings every 3–4 months to discuss patients on GSF, patients eligible for GSF, GSF recording, dialysis patients who are failing and may need a discussion regarding withdrawal, difficult cases (patient/family issues), deaths, recording of DNACPR etc.
Annual audit of all the above.
Use of DNACPR and ACP and Register.
Survey currently being developed.
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6.2. Which factors do you think could help improve the provision of conservative care in your unit? Please indicate how strongly you agree or disagree with each of the following |
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Answer options | Strongly agree | Agree | Neither agree nor disagree | Disagree | Strongly disagree | Response count |
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Increasing the number of staff dedicated to conservative care | 21 | 19 | 19 | 3 | 2 | 64 |
40 | 19 | 5 |
Increasing the number of times conservative care patients are seen by staff | 5 | 12 | 29 | 14 | 2 | 62 |
17 | 29 | 16 |
Increasing clinic time | 9 | 20 | 24 | 9 | 2 | 64 |
29 | 24 | 11 |
Providing better end of life care by implementing ACP | 13 | 30 | 17 | 3 | 1 | 64 |
43 | 17 | 4 |
Improving computer systems by integrating primary care data with renal data | 24 | 24 | 13 | 2 | 1 | 64 |
48 | 13 | 3 |
Increasing involvement of allied health-care professionals (e.g. social worker) in treatment decision-making | 15 | 30 | 13 | 5 | 1 | 64 |
45 | 13 | 6 |
Increasing communication/involvement with GPs | 16 | 36 | 8 | 2 | 2 | 64 |
52 | 8 | 4 |
Increasing communication/involvement with community teams | 17 | 33 | 11 | 2 | 1 | 64 |
50 | 11 | 3 |
Increasing communication/involvement with other hospitals | 9 | 25 | 24 | 4 | 2 | 64 |
34 | 24 | 6 |
Increasing communication/involvement with palliative care teams | 13 | 36 | 9 | 5 | 1 | 64 |
49 | 9 | 6 |
Providing renal staff members with more education/training regarding conservative care | 22 | 30 | 9 | 2 | 1 | 64 |
52 | 9 | 3 |
Providing GPs with more education/training regarding conservative care | 13 | 38 | 9 | 3 | 1 | 64 |
51 | 9 | 4 |
Providing palliative care teams with more education/training regarding renal conservative care | 10 | 34 | 8 | 10 | 1 | 64 |
44 | 8 | 11 |
Providing patients with better decision aids about conservative care | 10 | 30 | 16 | 7 | 1 | 64 |
40 | 16 | 8 |
More funding to develop conservative care within unit | 21 | 27 | 10 | 5 | 1 | 64 |
48 | 10 | 6 |
Having funding models specifically designed to reimburse the costs of delivering CKM | 24 | 18 | 17 | 2 | 2 | 63 |
42 | 17 | 4 |
Having a written conservative care policy | 15 | 22 | 18 | 7 | 2 | 64 |
37 | 18 | 9 |
Having dedicated conservative care clinics | 9 | 14 | 28 | 9 | 4 | 64 |
23 | 28 | 13 |
Establishing a system for evaluating the provision of conservative care | 12 | 35 | 12 | 4 | 0 | 63 |
47 | 12 | 4 |
Having better evidence of the comparative outcomes between patients who receive conservative care and those who receive dialysis | 22 | 29 | 7 | 3 | 3 | 64 |
51 | 7 | 6 |
Having better evidence of the comparative costs between patients who receive conservative care and those who receive dialysis | 10 | 17 | 20 | 7 | 10 | 64 |
27 | 20 | 17 |
Other | 2 | 0 | 2 | 0 | 1 | 5 |
(Please specify and rate) | 3 |
Answered question | 64 |
Skipped question | 3 |
Greater/easier access to community palliative care resources via patchy depending on geographical area.
More community/GP support.
We are already undertaking the above agreed aspects of care.
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6.3. What, if any, of the following changes are planned in your unit regarding the provision of conservative care? Please tick all that apply |
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Answer options | Response per cent | Response count |
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Increasing the number of staff dedicated to conservative care | 25.4 | 16 |
Increasing the number of times conservative care patients are seen by staff | 6.3 | 4 |
Increasing clinic time | 19.0 | 12 |
Providing better end of life care by implementing ACP | 52.4 | 33 |
Improving computer systems by integrating primary care data with renal data | 33.3 | 21 |
Increasing involvement of allied healthcare professionals (i.e. social worker) in treatment decision-making | 22.2 | 14 |
Increasing communication/involvement with GPs | 50.1 | 32 |
Increasing communication/involvement with community teams | 38.1 | 24 |
Increasing communication/involvement with other hospitals | 14.3 | 9 |
Increasing communication/involvement with palliative care teams | 39.7 | 25 |
Providing renal staff members with more education/training regarding conservative care | 57.1 | 36 |
Providing GPs with more education/training regarding conservative care | 30.2 | 19 |
Providing palliative care teams with more education/training regarding renal conservative care | 17.5 | 11 |
Providing patients with better decision aids about conservative care | 30.2 | 19 |
Obtaining funding to develop conservative care | 15.9 | 10 |
Writing up a conservative care policy | 25.4 | 16 |
Having dedicated conservative care clinics | 19.1 | 12 |
Establishing a system for evaluating the provision of conservative care | 33.3 | 21 |
None planned | 6.3 | 4 |
Other (please specify) | 12.7 | 8 |
Answered question | 63 |
Skipped question | 4 |
Hospices are also integral, and deliver important care, especially to some of our patients further from the main centre. We often communicate with them to facilitate discharge, or avoid admission (e.g. for infections, blood transfusions etc). We are implementing a register to facilitate all this. I have not seen hospices mentioned much in this questionnaire.
Involve counselling team and patient decision making and decision aids.
Better recording centrally of treatment decisions.
Planning or wish list?
Would like all of the above but no funding agreed either from within hospital or from primary care.
Comment after ‘none planned’ – no funding is available and kidney care project is finishing.
Small sense that is working well. Small enough to know everyone and pick up a phone!
Increase psychology input.
7. Future research
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7.1. Would your unit consider it appropriate to enter a patient aged 75 and over with CKD5 into a randomised clinical trial comparing conservative care versus dialysis? (An abstract of the proposed design is provided below) |
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Answer options | Response per cent | Response count |
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Yes, for some patients | 64.6 | 42 |
No, never | 35.4 | 23 |
Answered question | 65 |
Skipped question | 2 |
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7.1.1. Would your unit be willing to participate in such a trial? |
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Answer options | Response per cent | Response count |
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Yes, definitely | 42.9 | 18 |
Maybe | 47.6 | 20 |
No | 2.4 | 1 |
Other (please specify) | 7.1 | 3 |
Answered question | 42 |
Skipped question | 25 |
We would need to allocate specific staffing to this, as part of our plan to increase commitment to conservative care. We’d struggle to service study needs before then.
Difficult to recruit patients. Very small number.
Don’t know.
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7.2. Would your unit consider entering CKD5 patients aged 75 and over into a prospective multicentre observational study to compare conservative care and dialysis, which addresses the major selection bias? (The same abstract shown previously is provided below again) |
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Answer options | Response per cent | Response count |
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Yes, for some patients | 92.3 | 60 |
No, never | 7.7 | 5 |
Answered question | 65 |
Skipped question | 2 |
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7.2.1. Would your unit be willing to participate in such a study? |
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Answer options | Response per cent | Response count |
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Yes, definitely | 46.7 | 28 |
Maybe | 46.7 | 28 |
No | 0.0 | 0 |
Other (please specify) | 6.7 | 4 |
Answered question | 60 |
Skipped question | 7 |
RRT choice – treatment or conservative care MUST be based on patients choice and by informed consent. If a study allows freedom of choice/informed consent and then observed outcome – this would be acceptable.
As above.
Would need to discuss with the team although my feeling is no.
Don’t know.