Presentation – Preventing Early Home HD Dropout

Learning Objectives

  • Outline four ways to mitigate patient-level reasons for early home HD dropout.

  • Provide three reasons for customizing home HD treatments to individual patients.

  • Describe three approaches to clinic-level reasons for early home HD dropout.

Home Dialysis Dropout

When we teach patients to treat their chronic disease at home, we give them the gifts of confidence, self-esteem, self-reliance—and treatments that can better fit their lives and boost their quality of life and survival.  Training takes patient/care partner time and clinic and company resources.  For those who can’t or choose not to go home after training, failure can be both costly and emotionally devastating.  It may also take months to year or more of home HD to break even on the training costs, machine rental, and supplies, depending on the machine.

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In a study of more than 2,840 people who started home HD at a large dialysis organization over a 3-year period, 24.9% had stopped it within a year (Seshasai RK et al., 2016).  Of these, 7.6% had died and 7% got transplants.  Of the rest, 9% stopped home HD within 3 months16% within 6 months, and 35% within 2 years.  Unfortunately, switching from home to standard in-center HD can dramatically raise 90-day mortality.  One study found a 26% increase in deaths (Tran E et al., 2023).  For all of these reasons, reducing home HD dropout is essential.

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Preventable Reasons for Home HD Dropout

Transplant and death are two reasons we lose patients from home HD we can’t control.  There are also predictable reasons that we can identify and address as soon as possible to keep people on therapy.  These fall into two main areas (Tran E et al., 2023):  
1). Patient
2). Clinic    
Let’s start with patient-level risk factors.

Patient-level Risk Factors for Home Dialysis Dropout Include

Baseline characteristics.  Smoking or drug or alcohol use may reduce motivation to do home HD.  On the other hand, patients listed for transplant were 27% less likely to drop out of home HD (Tran E et al., 2023)—which suggests transplant and home HD do not compete and we can encourage both.  People of color are less likely to have the opportunity for home HD in the first place (Mehrotra R et al., 2016), which is unacceptable.  Skin color does not determine home therapy success—motivation does.

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Comorbidities. Likewise, poorly-controlled diabetes, cardiovascular disease, frailty, obesity, or other health conditions may reflect a lack of education about self-management or motivation to take on healthy behaviors, so patients who have them would need to find a new motivation to go home.

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Mismatch of modality or prescription to patient lifestyle and values.  This factor is a common-sense one.  Research into patient reasons for stopping PD or home HD that include burnout and patient choice touch on this important concern.

Address Patient-level Reasons for Home HD Dropout

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As much as we may love home therapies and the positive impacts we’ve seen, patients may not agree.  For them, the notion of bringing a complex medical treatment into their homes is jarring and intimidating and can intensify the anxieties and fears they already have about kidney failure.  Patients worry that they won’t be able to learn enough to do their own treatments, or that something will go wrong.  Some want their homes to be serene—not medicalized. They are afraid that their lives as they knew them are over and that they will die soon.  This is the context you and your patients start with, and why reassurance is always a good first place to start when you start training someone for home HD.  

Comorbidities. Likewise, poorly-controlled diabetes, cardiovascular disease, frailty, obesity, or other health conditions may reflect a lack of education about self-management or motivation to take on healthy behaviors, so patients who have them would need to find a new motivation to go home.

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Begin at the Beginning

How do you reassure terrified patients?  Communicate.  Tell them all of their feelings are normal responses to crisis and to the unknown.  They may be avoidant of all things dialysis, when learning more could make them less afraid.  Hope is the flip side of fear (Hammer K et al., 2009)  We can’t teach patients until we can help them see the light at the end of the tunnel.  

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To succeed in training—and at home—patients need to take an active role in their care.  Ask your patients “What matters to you?” and show them how their choices can help them to keep those things.  Then, guide them to envision their goals.  Having a scary chronic illness instantly takes a lot of personal autonomy (control) away from patients.  Restoring autonomy is healing.  Help them to realize that they still have control:  Explain that they are the only ones who can feed and exercise their bodies or take their meds as prescribed.  With home therapies, they can choose:

Home Therapies Linked with Better Patient Activation

(Hussein WF et al., 2022)

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We can empower our patients to learn and become more confident:  182 people on dialysis (132 in-center and 43 home (unspecified) filled out a Patient Activation Measure (PAM) survey at the start of treatment and at 4 months.  Home dialysis changed patient activation.  At the end of 4 months, home patients had significantly higher PAM scores than in-center patients, even after adjusting for sociodemographics, comorbidities, and CKD nephrologist care.

Incorporate Lifestyle into Training

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When we look at Maslow’s Hierarchy of Needs, “other bodily necessities” is at the base—a most important thing that has to come first.  And, we know as clinicians that replacing kidney function is a necessity, not a luxury.  Without, nothing else happens.  We are in a unique position in home dialysis to directly apply this theory to our practice.  We generally have long-term relationships with our patients, which allows for meaningful and individualized plans of care.  This is one of the most rewarding parts of our jobs! (Simple Nursing, 2022)

5 Levels of Maslow's Hierarchy of Needs

Physiological needs always come first.  These are the most basic “things” required for survival and include the need for food, oxygen, and shelter.  For our patients, dialysis treatment is necessary for life to continue and therefore nurses, a foremost priority.  Any issue disrupting physiologic stability must be intervened upon immediately. 

Safety needs include how physically and psychologically secure your patients are and feel.  We are working at this level when we assess a patient’s home for adequate task lighting in their treatment area and when we educate about using moisture sensors.  By taking action to ensure physical safety and making sure they are well understood, we are helping move patients to a place of feeling psychologically stable and safe at home.  Having an on-call RN who answers the phone after-hours is a safety need—and a CMS requirement.   Telehealth and remote monitoring can help keep patients feel safer.

Safety Needs and Solo Home PD or HD

Emphasize the extra safety precautions for home.  Remind patients that they can call or message you, another on-call nurse, or the equipment manufacturer.  Home HD patients may use moisture alarms under the access arm and dialyzer.  Or, they may feel safer at first with remote home monitoring.

Teach HD patients who use the Buttonhole technique to use sharps.  Rather than becoming frustrated if a Buttonhole site doesn’t cooperate and missing a treatment, a confident patient can start a new set or switch to the Rope Ladder technique for a treatment or two.  Some patients have one Buttonhole and rotate sites for the other needle.  That’s the beauty of home HD.

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Love and belonging needs fall into the middle of the pyramid and includes your relationship with your patients.  When we build rapport and trust, set realistic expectations, and communicate well with our patients, they feel comfortable talking about their higher goals—which are necessary to support motivation forward. Support systems are important to build and maintain.  Encourage patients to meet other patients and reach out to their friends. Peer mentoring and support groups can offer emotional support to patients and care partners, as can the social worker.  Work with patients and care partners on task management to avoid burn-out and shore up this level.     
 
Self-esteem needs are being met when patients feel accomplished, and like their hard work is paying off. This is where patients are learning to feel confident in their skills and are meeting goals and making new ones. This is achieved only after the majority of the bigger needs are already met
 
Self-actualization occurs when a patient is fully independent and self-motivating.  This can take time. Setbacks are normal and you may need to start at a different level when trying again.

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Help Patients Match a Modality or Prescription to Their Lifestyle and Values

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Gentle, physiologic treatment is the true benefit of PD or home HD, compared to standard in-center HD.  This is much more than just moving an in-center treatment to a different setting.  Flexibility is a tremendous asset to home patients and can make the difference between success and dropout.  Having the freedom to choose which days and hours to spend doing treatment in a given week, for example, can mean being able to keep a job with a good health plan—or not.  

Encourage Patients to Identify Sources of Emotional and Instrumental Support

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To help your patients, you need to get to know their lives.  Once you do, you can:

Offer the Social Worker as a resource

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Peer mentoring connects trained patients with other patients

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Reconnect patients with their own family and friends

Suggest that patients join an online support group for home dialysis patients

Point patients to online stress measurements

Inform patients that Medicare covers outpatient therapy under Part B

Address Patient-level Reasons for Home HD Dropout

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In-center HD tends to have a trained staff member (nurse or technician) delivering a complex treatment to a passive patient.  Moving that model into the home is not a recipe for success.  Overburdening a care partner with medical tasks a capable patient can manage unassisted can encourage learned helplessness, damage a relationship, and lead to home HD dropout.

There are reasons why some patients cannot assist with their own treatments, such as brain damage, severe short-term memory issues, paralysis, frailty, mental disability, blindness, or being a small child.  In general, however, the more patients “own” the responsibility for doing as much of their care as possible, the less burden there is on a care partner.  Solo home HD patients do not have care partners at all.  Use the free Partner Agreement tools (PATH-D-HHD) in English or Spanish to help patients and care partners sort out who will do which of the home HD tasks.

I was told that HHD was easy and I would love it.  It was a lot of work!  And, I didn’t feel better.” 
 
It’s unwise to oversell home HD as being “easy!,” “great!”, “shorter!,” or something a patient will “love.”  All of these things may eventually be true—but not at the beginning.  We don’t want to create additional fear, but it’s our job to acknowledge the challenges of learning a complex new life-sustaining skill and the extra workload, and to normalize feeling overwhelmed.  

Help Patients to Have Realistic Expectations

Forming Routines

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Advocate to Keep Dialysis as Physiological as Possible

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Tweak the Prescription if Needed

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Assess the patient’s vital sign trends

Is the patient’s pulse different?  How has it changed?

How is blood pressure trending?  Rising BP can suggest fluid overload.  Or, patients can become dehydrated—and their BP will drop.  If they did not have a dose reduction or have their  antihypertensive(s) discontinued during training, it may be time.  Always ask yourself, “Could this be sepsis?”  Symptomatic hypotension should not be tolerated in any setting.  At home, it is safest to catch blood pressure before it drops.  Blood pressure crashes at home are aversive to patients and terrifying to care partners—and may contribute to dropout from home HD.  

Has body weight changed?  At home, patients will use their bathroom scale—and may not wear clothes to weigh themselves, which tends to reduce their scale weight a bit.  Depending on the symptoms, dry weight may need to be adjusted up or down. 

How is the patient breathing?  Rapid breathing or dyspnea may suggest acidosis.  Slower breaths might mean heart failure.  A virus can change a patient’s breathing.

Look at the patient’s labs

Does a patient have more urea?  A BUN that is trending upward can mean a patient who is getting less treatment than during training:  cutting treatments short, skipping treatments.  Or, recirculation could be reducing the dose of HD.

Is anemia well-managed?  Aim for a steady-state; roller-coaster ups and downs are extremely hard on patients (Schatell D, Witten B, 2004).  Losing blood circuits or prolonged bleeding can contribute to anemia. GI bleeding in any patient or heavy periods or uterine fibroids in women can as well.  

Does the patient feel weak?  Look at electrolytes and CO2.  Are potassium, calcium, or phosphorus out of range?  Could the patient be acidotic?

Is the patient short of breath?  A patient who has gained weight and complains of shortness of breath may have gained fluid weight, which would dilute lab values.

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Ask about the dialysis schedule

How long do set-up or cannulation take?  Consider ways to reduce treatment burden, such as making up supply packs once every week or two, so each supply does not have to be gathered every day.

Does the patient feel rushed or stressed to get on or off treatment?  We don’t want treatments to be cut short to allow patients to get on or off more quickly.  

How many days a week does the patient NOT do treatment?  Look at the treatment sheets with a calendar in front of you and highlight the 2-day gaps to alert the nephrologist.  The ability to set a dialysis schedule is one of the pluses of home HD.  However, skipping 2 days between treatments dramatically increases the risk of death.  In a study of 375,482 deaths of PD and in-center HD patients, the chance of dying was almost 50% higher on a Monday or Tuesday after a 2-day treatment gap than any other day of the week (Bleyer et al., 1999).  We heard of a patient who dialyzed Monday, Tuesday, Wednesday, Thursday—and then took 3-days off each week. 

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Consider the Home HD Machine Settings

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Reduce the Ultrafiltration Rate  

Aggressive ultrafiltration dehydrates the patient’s blood, deprives tissues and organs of oxygen, and causes a host of grievous systemic injuries including:

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Loss of residual kidney function (RKF)any remaining kidney function is stunned.  In a study of 1,524 people, (Lee YJ et al., 2020):

Ultrafiltration Rate (UFR)Risk of All-cause MortalityRisk of Loss of Residual Kidney Function
6 to <10 mL/h/kg43% higher73% higher
10 to <1351% higher89% higher
>1376% higher275% higher
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Address Patient-level Reasons for Home HD Dropout

Help your patients connect the dots between their UFR and how they feel after each treatment.  A free UFR calculator can make it easy for patients to learn what their max UFR should be to feel their best. 

Wipeable vinyl stickers that adhere to the machine can keep the calculator front and center for patients as they set up their treatments.  

Slow Down the Blood Pump  

It is common for in-center HD patients to run at blood pump speeds of 400, 450, or even 500, due to a mistaken belief that faster pump speeds improve adequacy (Ward R, 1999)—that was disproven in 2014.

Anecdotally, some patients also report feeling anxiety or chest pain when the blood pump moves too quickly for their physiology.  Turning the pump speed down eases their symptoms.  In the home HD setting, there is no reason to “flog” fistulas by running at pump speeds faster than 350 mL/mi.

Add More Treatment Time  

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Kt/V is a minimal and very flawed measure:

  • Kt/V measures only urea
  • Kt/V does not consider fluid status
  • Kt/V does not consider fluid status
  • Singlepool Kt/V is meant for three HD treatments per week

Singlepool Kt/V is meant for three HD treatments per week

A patient’s weight does not necessarily equate to fluid volume. A standard Kt/V (adjusted for continuous clearance) measures adequacy of more than three treatments per week, so it looks at the whole week.  While CMS requires the use of single-pool Kt/V for everyone, it is also vital to look at both the single pool and standard result to determine if a home HD patient who does 4, 5, 6, or 7 treatments a week is getting enough dialysis.

New research is looking at standardizing Kt/V to body surface area (BSA) instead of volume

A study of 506,000+ patients looked at the impacts of standard Kt/V and BSA-adjusted Kt/V for mortality, anemia, and hypoalbuminemia for a median of 2 years (Pattharanitima P et al., 2020).  Survival, anemia, and albuminemia outcomes rose the higher BSA-adjusted Kt/V levels were.  We can’t deliver a lot more HD in-center due to time and cost constraints—but we can offer this to patients at home.  In the future, we may see a new formula that uses BSA-adjustment to help us all deliver better care.

Communicating Across the Patient-Clinic Bridge

As a nurse, you have a responsibility to not abandon your patients.  You have to monitor them and do care plans, follow up, look at labs, document, etc.  Your employer has to bill for services and pass audits and maintain good documentation.  Your patients do not have any of these constraints.  They are not thinking about your company’s business, nor should they.  But, YOU must still ensure that they run their treatments—safely.  

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  • Chaotic treatment patterns

    (e.g., 2 hours one day, a 3-day gap, then a 9-hour treatment…).  Flexibility in treatments is a benefit—to a point.  Teach your patients why avoiding 2+ day treatment gaps is essential to help them feel their best and live longer.  A paper desk planner may help patients whose treatment patterns are chaotic.

  • A drop-off in the number of treatments per week or hours per treatment

  • Variations in blood pump speed and pressures that could reflect access problems

    Patients need to know that rising venous pressure or not being able to run at the prescribed rate suggests a possible stenosis. But, some treatment is better than none; they still need to treat.

  • Weight or blood pressure that don’t make sense

    You might be able to determine that a patient isn’t really checking these vitals if, for example, blood pressure is down but weight is up by 6 kg. If you do detect this, let them know that this is one of the oldest tricks in the book—and you do care about them and are checking their numbers.

  • Intense or very needy patients

    Some stable patients may call you a lot. You may be the only person who has ever listened to them—about anything. They can be exhausting, and you still need to keep the impatience out of your voice and help them have a good day. Be aware that one day these patients may have a real health concern.

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