Table 2 Patient and Family Member Input that Guided Intervention Design

Overall Concept

What do patients need to help prepare them for decisions about which kidney disease treatment is best for them?

Patients should be asked what “quality of life” means for them, and need help getting the treatment that helps them achieve that quality.

Guided the creation of ‘Patient-Centered Kidney Transitions Care’ intervention. Includes: 1) tools to help providers focus on patients’ values and treatment preferences and 2) a Kidney Transitions Specialist who will provide patients with knowledge, skills and assistance.

The whole point of “choice” is to continue your life as much as you want as possible. Patients need to be able to explore with their providers their goals and then receive information and education about the treatments that fit their lifestyle.

If patients are already on hemodialysis, what help is needed (if any?) to get a kidney transplant?

1. Many patients don’t know all their options for treatment. They are not given the choices.

Education and informed decision-making about kidney failure treatments are emphasized in the intervention.

2. Patients often struggle with keeping an open mind about their treatment options. Hearing from other patients about their experiences on different treatments can help them to understand how treatment might work for them and their life.

Patients can be connected to peer support through a partnership with the National Kidney Foundation’s Peer Support Program.

3. Need to create an educational video that covers the options for treatment and lets patients tell their story of being on treatment. Patients need to hear from other patients why they chose their treatment and what life is like on that treatment.

Incorporated decision support materials (video and book) including real patients talking about their experiences on the various kidney disease treatment modalities.

How much information does a patient and family member need? What kind of support do people need when they get materials?

There are great materials out there and the intention is that someone will sit down and review them with patients, but the truth is that many of the staff doesn’t have the training or the time to do this.

Intervention adds Kidney Transitions Specialist to the health care team who can review materials with patients.

There is variability in how much information a patient needs. Some patients are “hungry” for information but others can be turned off by too much information. Helpful to give patients a little bit of information at a time.

Kidney Transitions Specialist will ascertain patients’ current knowledge of kidney disease and offer individualized support.

Could someone outside the treatment team serve as an advocate for the person making their own treatment choice?

Social workers have special training that helps them to talk with patients and explore with them their needs.

Led to creation of Kidney Transitions Specialist role.

Study participants

Target pre-ESKD patients who will likely need renal replacement therapy (RRT) within 1–2 years (eGFR < 18)

Too late in disease progression; want to have information earlier to slow progression to kidney failure.

Target pre-ESKD patients with eGFR < 30 or increased risk of disease progression determined by risk prediction model.

What about targeting people with certain comorbid diseases who you think will progress to kidney failure?

Target patients who recently started dialysis

Too late in disease progression; once patients start dialysis it is hard to change treatment modalities.

No longer including patients who recently started dialysis.

Study Sites

Nephrology practices and dialysis facilities

Too late in disease progression to start at dialysis facilities; once patients start dialysis it is hard to change treatment modalities.

No longer intervening in dialysis facilities.

Intervention Component 1: Health Information Tools

Create a ‘registry’ of patients in the practice who, based on their eGFR or rate of kidney disease progression are likely to need to make a kidney disease treatment decision within 1–2 years, and give them information about treatment options.

Even “low risk” patients need some information so they are not blindsided if kidneys fail.

Stratify patients into low and high risk and tailor interventions accordingly.

Care manager documents patients’ preference for kidney disease treatment before treatment initiation and physician signs off on preference (Advance directive of patient choice).

The patient would need a lot of information up front to be able to choose a treatment.

Patient receive needed treatment information from Kidney Transitions Specialist. Treatment decision included in medical record.

Intervention Component 2: New Team Member and Programs

Patient assigned to a care manager who helps the patient decide which kidney disease treatment is right for them.

Also want a buddy/peer to walk them through the process, like a college orientation. But also need care manager for technical info.

Kidney Transitions Specialist will act as their ‘champion’ and partner patients with peer support.

All patients who get on the ‘registry’ are ‘prescribed’ the decision aids (books and videos)

Sometimes it is information “overload.” Need a human being there who could help them through the material and the process.

Kidney Transitions Specialist will meet 1-on-1 with patients for individual decision support.

Nephrologist flagged to discuss kidney disease treatment options with patients on registry

Nephrologist only has 10 min with patients

Kidney Transitions Specialist will provide individualized, comprehensive support.

Miscellaneous input

Patients go through grief cycle after kidney failure and have anxiety and depression, health providers don’t get that

Care manager supports patient and family psychosocially, helps them find support. Refer all patients to an initial mental health assessment and provide needed psychological support.

Outcomes

1. Patient Outcomes--Questionnaire:

• Pre-ESRD choice of modality

• Knowledge

• Comfort

• Family engagement

• Decision-self-efficacy

• Psychological: stress, depression, anxiety—global and specific to decision

• Engagement in preparation activities (adherence to referrals)

• Transplant evaluation and wait listing

2. Patient Outcomes—EMR:

• Biomedical: BP control and anemia management after intervention

• Circumstances of initiation and choice of initial therapy

• Health care utilization

3. System Outcomes—EMR:

• Care manager places order for preference in EMR

• MD co-signs orders for preference KRT

• Sustainability (RE-AIM)

1. Loss of Control – one of the hardest things for kidney patients to get their head around. “To get control of the loss of control. How do you go on from here?” Measure empowerment, purpose.

2. Acceptance – acceptance you will be on a machine. You have a choice to accept that you will be on that machine. Little things like needing to extend time on dialysis can be really devastating.

3. Grief – most of the medical team don’t get that patients are grieving a huge loss in their life.

4. Mental status

5. Quality of Life

6. Depression, Anxiety

7. Kidney understanding

8. Family member kidney understanding

Added to outcomes:

• Patient Control, Decision-Making

○ Empowerment Score

• Control (locus of control) and patient activation

• Need for mental health support

• Quality of Life