Patient recruitment and selection

1
Patient recruitment and selection

• John Moran,
• Corporate Medical Director
• moranj_at_wellbound.com

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How many patients could be on home HD?

• I wish I had an answer to that because I'm
  tired of answering that question - Yogi Berra
• My guess is gt 20 (U.S., more in other
  countries)
• There is no point in arguing about exact number
  we are so far south of what is possible
• Where should we be recruiting patients?
• Patients new to dialysis
• In-center patients
• Failing transplants
• PD dropouts

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Barriers to patient recruitment

• Urgent in-hospital catheter dialysis start and
  commitment to center HD pathway
• Acute event precipitating ESRD
• Unrecognized ESRD
• Poor medical judgment
• Patient in denial
• Patients in no condition to make informed choice
• Patients not informed of choice
• Patients not adequately informed e.g., fear of
  needling but buttonhole technique not explained
• Training center not available

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Overcoming the barriers to recruitment

• Early discussion of the options it is never too
  early to start educating the patient
• Ease in-center patients stepwise into home
  self-care
• Education in-center on setting up machine,
  self-cannulation etc
• Self-care in-center
• Home HD
• Home nocturnal HD
• Keep asking about home as the patient continues
  in-center

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Overcoming patient fears

• Education
• The worst fear is fear of the unknown
• Gentle and patient and repeated education to
  explain these very complex procedures
• Chance to talk to other patients
• Chance to see equipment and procedures live
• You can observe a lot by just watching Yogi
  Berra
• Include appropriate family members and friends
• Support
• Provide and emphasize ongoing support, with 24/7
  coverage
• You are not alone

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WellBound

• Large scale Centers of Excellence model
• Dedicated, expert clinical staff independent of
  in-center hemodialysis
• Primary focus is on dialysis options education,
  wellness programs and care coordination
• Support all self-care dialysis options
• Peritoneal dialysis
• All FDA approved home hemodialysis systems
• Collaborative partnership with nephrologists

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CKD Patient Education

• In the WellBound home training centers, patients
  receive ESRD options education either in groups
  or individually
• Sessions last 2-3 hours, with RN, dietician and
  social worker MD invited
• Standardized PowerPoint presentation approved by
  medical directors
• Sessions are at set regular times patient does
  not need to make an appointment
• Patients are encouraged to attend more than once
  if wish
• All options are presented, including
  conventional in-center HD, PD, renal transplant,
  and the various regimens of home HD

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How long should the training period be?

• As long as it takes
• Christchurch, NZ
• Median training time 35 days
• Training is a long-term investment
• An ounce of prevention is worth a pound of
  cure
• Example
• 8 weeks to train
• Went home on HD
• Came back for further 2 weeks training within 3
  months
• Now on therapy for gt 2 years

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Patient (and partner) selection

• Safety is the first consideration
• Compliance is the second (but good luck
  predicting it!)
• Cannot consider the patient separately from the
  partner (presuming there is one)
• The pair need to be considered as a work unit
• Someone, or some combination of the two, has to
  be responsible for the entire procedure
• What are the absolute contraindications to home
  HD?
• I dont know
• Limited life expectancy disseminated
  untreatable malignancy?

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Is this patient a candidate for home HD?

• 59 year old male
• ESRD due to multiple myeloma with light chain
  nephropathy
• Diabetes

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Outcome

• Died after 12.1 months
• No hospitalizations
• Remained at home throughout illness on daily
  home HD
• Family and patient certainly thought it was the
  best possible outcome

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We have to be able to say no

• Nurses are precious the most valuable asset a
  training center has is training time
• The worst mistake is to train a patient who will
  never make it home
• Second worst is to train a patient who will not
  have a worthwhile technique survival, either
  because of death or because of poor quality of
  life at home

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The patient who is non-compliant/angry in-center

• The situation needs to be assessed in a
  non-biased way
• Are they burnt out with rigid dialysis schedule?
• Are they frustrated in attempting to lead a
  normal life around the rigid schedule?
• Are they underdialyzed and feeling lousy?
• Have they had problems e.g., bad sticks,
  crashing because of poor treatment?
• The anger may be justified

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Patient referrals

• Doctors are encouraged to send all patients, not
  just those thought suitable for home dialysis
• No nephrologist has comparable time to discuss
  dialysis options and other issues such as access
• Doctors may believe patients have specific
  contraindications to one or other form of
  therapy may be relative, may be temporary
• Patients have a right to know of all modalities
• Patient choice may be very different from
  doctors bias
• Patient may change decision after hearing class
  and talking to other patients

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What do patients choose, given all the options?

• Up until September 30, 2006, 1,020 patients were
  given options education in the WellBound centers.
  
• Of these, 46 chose a home therapy
• 54 chose in-center HD
• As of September 30, 2006, 385 patients were being
  treated within WellBound
• 81 (312) on PD
• 19 (73) on HHD

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In-center Hemodialysis

• 54 Chose in-center hemo
• Primary Reasons
• Fear of performing self-care
• No helper or support at home
• Physician said it would be best
• Lack of space at home for supplies or equipment

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Why do patients choosing home choose PD?

• 80 chose PD
• Primary reasons
• 82 stated freedom
• 6 stated easy to do
• 2 stated fear of needles and/or blood
• Other reasons
• Distance from center
• Desire for control over their care
• Wanted a treatment that provided more of a
  steady state
• Family members input

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Home HD

• Primary reasons for choosing home HD
• Dissatisfied with in-center care and/or outcomes
• PD drop-outs
• Most common choice is short daily
• After 18 24 months some are switching to
  nocturnal
• Only 9 chose HHD as a first modality option

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Allow a full menu of choices of home HD regimens

• 82 (60) on Short Daily
• 48 6 days/week
• 6 5 days/week
• 2 4 days/week
• 4 every other day
• 18 (13) on Nocturnal
• 9 6 nights/week
• 1 5 nights/week
• 1 4 nights/week
• 2 every other night

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Access

• Best access is an AV fistula with buttonhole
  (same site) technique
• 2 serious Staph aureus septicemias in young
  males need to emphasize skin prep and sterile
  technique

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Patient retention

• Partner needs to be treated like a
  living-related donor
• Full understanding of what they are committing
  to
• Chance to say no in private
• Patients need to make an informed choice
• Do not want to spend time training only to have
  them want to switch
• Need to understand long-term commitment to
  follow-up, record-keeping etc

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Final thoughts

• Conventional 3/week dialysis is not optimal
  dialysis and maybe not even adequate dialysis
• So we should stop bullying the patients about
  their non-compliance
• It is our fault, not theirs, that phosphate is
  high, that BP is high, that weight gain is high,
  etc, etc
• We need to get as many patients as possible on
  daily dialysis and therefore as many as possible
  on home dialysis

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A final final thought.

• The future ain't what it used to be Yogi
  Berra