A06 Home haemodialysis 2014
Dr Clara Day
Lead for haemodialysis, University of Birmingham NHS Trust
Comments on updated specification.
Summary:
The body of the specification seems reasonable and deliverable for patients and carers involved with
home haemodialysis in the UK. I do have some comments as detailed below (in section 3). My main
concerns with this specification are linked to the ‘domains of care’:
a. Section 2 lacks structure and organisation and adds very little to the document. I feel it
should be moved to an appendix
b. The measurement through national audit of the domains of care are not all workable at this
point. To be useful, and not a frustrating tick box exercise, these measures need to be very
explicit and widely accepted as a true measure of both quality care and the appropriate
patient care domain. Suggestions are included.
Section 1
Although it is very difficult to separate case mix….I am not sure that this sentence is required and if
so, then not at this point. I think that current data, particularly relating to increased frequency
(especially short daily) has demonstrated a better outcome both related to combined death and
cardiovascular outcomes and death and physical functioning.
Furthermore, these therapies are cost effective in the UK when compared with hospital
treatments and have been demonstrated to be safe. Does this relate to portable therapies or
standard? There is only one portable therapy at present (NXStage) available in the UK and this is
not a cheap method of dialysis. I am not aware of definitive evidence about costing of HHD in
this country showing it to be cheaper and note this statement isn’t referenced. It probably is,
but we need to ensure factoring in of the increased frequency of therapy often performed at
home (and a big advantage of home dialysis), the cost of home conversion and equipment, cost
of training and patient drop out. This has not been published on in the tariff era. In addition we
need to be careful about new portable therapies; they are almost certainly more expensive than
using standard HHD methods and this will at some point need some acknowledgement. They
may also be more expensive than what some units pay for their satellite dialysis for which there
is considerable variation in cost across the UK depending on arrangements with the
independent sector and staffing levels.
Section 2
Outcomes.
I understand the political imperative for the inclusion of this section but feels it adds nothing to
the document. It is unstructured and if needs to be included I would suggest it is included as an
appendix rather than at the beginning of the document. It simply summarises (in a rather
disorganised manner) what is stated later within the specification to follow.
Section 3
In general I feel that this is a reasonable specification on levels of care for this population. The
service specification includes a few issues which deserve some comment;
1. The discussion around the MDT team is very important. Although it is specified that the
consultant should have a particular focus, this should be widened to the wider MDT
caring for HHD patients. In order to maintain patient satisfaction and confidence, and
thus technique survival, a skilled and confident MDT, ideally with a primary nurse,
should be employed. This is not explicitly stated in this section although is mentioned in
Section 2.
2. Intravenous iron. This has been a topic of enormous debate across the HHD community.
Simply stating that it should not be given at home is unhelpful to the patient and to the
units who are trying to keep their service patient focussed. The information from MHRA
and ERA which was used to reach the most recent ruling combines risks from all
preparations of intravenous iron. Anecdotal evidence across the UK suggests very low
levels of problems with the most frequently used iron preparation in HHD patients in the
UK, iron sucrose, and this low event rate is reflected in the MHRA/ERA review of
evidence for this preparation. Communication between the MHRA and the Renal
Association has acknowledged that intravenous iron can be given ‘off licence’ if the Trust
is prepared to sanction and this should be acknowledged within this specification as is
now occurring in several UK NHS Trusts with large HHD populations. If further
information relating to this is required I am happy to supply
3. Hepatitis B immunisation does not always occur in primary care; many units have
control of their own immunisation programmes and this is important to maintain.
Specifications should reflect this.
4. Reimbursement…..I am not sure that heating should be reimbursed? Electricity, water
and, if necessary, methods of communication are reasonable, heating feels a bit
excessive.
5. It may be helpful to specify that there should be enough technical support to ensure
that RA guidelines for water testing can be performed and interpreted.
Appendix 1.
I am unsure of the contractual obligations of this section but am assuming that since these are
national specifications, these will be mandatory national audits. It is therefore vital that
measures are unambiguous, highly relevant and widely accepted by the renal community and
commissioners as truly reflecting the quality of the service to be measured.
Domain 1: preventing people dying prematurely (thus presumably acknowledging probable
extension in life with more frequent dialysis regimes which I denied in introductory section as
discussed above).
Domain 2: enhancing the quality of life for people with long term conditions
Suggested quality requirement for D1: for all suitable patients to have the option of performing
home haemodialysis
Suggested quality requirement for D2: to increase the number of patients accessing home
haemodialysis (These are really the same thing and should probably be combined).
Suggested measure D1 and D2 (although phrased somewhat differently for some reason) % of
patient receiving HHD as % of all patient receiving HHD measured by national audit
Benchmark with action plan if in lowest quartile
This seems a reasonable place to start; however further information would be helpful to ensure
HHD programme offers the regimes that will allow patients to potentially live longer and fit
dialysis schedules into their lives as they wish to. Therefore also suggest measure:
a. Ability to perform variety of dialysis regimes; standard, short daily, nocturnal. Don’t
need necessarily to have patients doing all these regimes as must remain a patient
choice and smaller programmes would otherwise be unfairly penalised. Should however
have ability to have these regimes if patient chooses.
b. Measure along with peritoneal dialysis (but keeping numbers and percentages separate
as often run separately in renal departments). Need to make sure have whole range of
home therapies to allow maximum choice and for department not to just focus on one
home therapy over another.
c. Somewhat controversially, it may be useful at some point to measure technique survival
of HHD (excluding transplantation and death). This may reflect suitability of modality
selection of patients and ongoing MDT support.
Domain 3: helping people to recover from episodes of ill health or following injury.
Suggested quality requirement for D3: to ensure patients are informed and involved in their care.
Suggested measure for D3: % of patients who complete education/ training programme
including repeat sessions/further education.
I am very unclear as to what this means and therefore how it will be sensibly measured. Home
haemodialysis patients will, by definition, have been through a very significant training
programme. Does it therefore mean all pre-dialysis patients known for more than 90 days plus
all patients starting on dialysis not known for 90 days to have full tailored discussion about
dialysis options within a certain time period? Need to be very specific if this is felt to be an
appropriate measure.
Evidence of outcomes of education sessions.
Exactly what evidence? Evidence of attendance, evidence of ‘quality’ of education? patient
feedback? (which may not properly reflect quality but politeness depending how collected),
evidence of increased uptake of HHD? (which will only occur if that is what patient wants). This
needs exact specification.
I do not feel that these measures are workable as currently written.
Domain 4: Ensuring that people have a positive experience of care
Suggested quality requirement for D4: to ensure patient informed patient choice and to be
involved in shared decision making. This is fine in principle but I am not sure directly related to
domain title
Suggested measure for D4:
1. Patient and carers service on quality of service yes very reasonable to do annual survey
(although these are generally not easy to write in a patient friendly manner)
together with satisfaction of choice of RRT (I am not sure that this is possible; patients
only have experience of their current or previous method of RRT and any dissatisfaction
in this measurement may well be related to general dissatisfaction with ESKD and need
for RRT rather than dissatisfaction with choice. One could ask; would you have preferred
another option of RRT that wasn’t offered to you but again…there are reasons why
patients cannot have a transplant, CAPD or indeed HHD which are not solvable and thus
very difficult to measure sensibly).
and patient reported health related quality of life. This is important but as yet we do not
have a sensible validated tool to use for this. The EQ5D is the DoH preferred method of
‘quality of life’ measurement (as it can be used to calculate Qolys) but not terribly useful
for everyday use. If what is meant in this case, is an ability to measure patient reported
outcomes (PROs) in a structured manner, eg pain, itching, nausea, depression, then tools
are in development for use within the dialysis population for measurement such as the
POSS-s renal. However these are not yet fully validated within the UK renal population
for routine use. Moreover, measurement and reporting nationally is interesting but of
little use to patients; what needs to be done, is that PROs are collected in a structured
and validated manner to aid discussion with the patient to improve their daily quality of
life.
2. Number and % of patients with access and instruction in use of RPV. Reasonable but
again define population.
3. Number and % of patients using shared decision making aids / actively involved in shared
decision making. This is tricky. We would all agree (I would hope) that patients, if they
wish to be, should be actively involved in decision making. However, as with PRO tools,
there are no agreed and fully validated shared decision making aids which can be used
for the complex decision of dialysis modality choice. This requires extensive support
from a very skilled and experienced MDT, personally tailored to each individual’s
circumstances. Boiling this down to use of shared decision making aids is somewhat
reductive and risks allowing reduction in the number of skilled staff to provide this role.
Again I really don’t think this is a usable measure.
For this domain I would suggest sticking for the moment with an annual survey of patient and
carer satisfaction with care along with an improvement plan. When an agreed and validated
PRO measure has been developed it should be used to enhance control of patient symptoms
within everyday care. This should be voluntary (but good practice) until this time.
Domain 5: Treating and caring for people in a safe environment and protecting them from
avoidable harm.
Suggested quality requirement for D5: to have relevant MDT and services available to support
and ensure the safety of the patient at home.
Suggested measure for D5: evidence of MDT and service available including arrangements for
24hour cover.
Evidence of respite care available at short notice if necessary.
These are very relevant measures but some thought needs to be applied to how collected rather
than just a self-certified ‘yes’. For instance a short generic (agreed) audit form detailing staff
numbers and training for a defined HHD population. Access to respite care will be more tricky to
measure but there should be evidence of spare capacity within satellite / in-centre HD to allow.
Annex 1 relating to provision for children is completely generic and thus a pointless addition.
Either have a service specification relating to paediatric home haemodialysis or simply reference
it.