Hospital Readmission and Severe Lupus Disease Activity

Life with lupus can feel like a revolving door — between your home, your rheumatologist’s office, and the hospital. There are many costs associated with hospital readmission, including lost time and risk of catching a disease. So, how can Lupus Warriors and hospitals work together to avoid readmissions?

In a study on Medicare patients, 20% of patients discharged from a hospital were readmitted within 30 days. Hospital readmissions cost patients and health insurance companies $15-$20 billion dollars per year. Plus, hospitalizations are a burden on Lupus Warriors and their families — costing time, energy, stress, and worry.

While it may seem like hospitals benefit from readmissions, steps have been taken to incentive hospitals to reduce repeat admissions. In 2012, the Hospital Readmission Reduction Program (HRRP) was established under the Affordable Care Act in an attempt to improve the quality of hospital care. It uses fines and reduced government funding as a punishment for high re-admission rates. And, HRRP encourages hospitals to get “better stats” by looking as measurable health outcomes. However, it might be ignoring other issues that affect both hospitals and their patients – especially people with lupus.

Lupus and Hospital Readmission

Because of the many comorbid symptoms of lupus – symptoms that occur alongside lupus – people with lupus often have to return to the hospital over and over again. About 10% of people with lupus end up in the hospital regularly, according to the Academic Health Science Center. Other sources list this percentage as high as 36% when including symptoms of lupus, including heart disease.

Additionally, people with lupus who are on immunosuppressant medications will often have to return to the hospital to fight infections related to their suppressed immune systems. This takes a toll on a person’s mental health, and leads to feelings of frustration, anxiety, and depression. Many patients and staff feel that all of this anguish can be prevented with adequate support in the hospital and at home.

Hospital Readmission Reduction Program

What causes hospital readmissions? What makes them so important? People return to the hospital for many reasons, but the reasons relevant to HRRP include the following:

• Lack of Education about treatment leading to the patient not being able or willing to stick to their treatment plan.
• Overworked Medical Workers who are tired and rushed, and end up missing and failing to treat key symptoms and conditions.
• Poor Transition of Care, where a patient is not properly prepared for moving to a new facility or to leave the hospital, leading to gaps in care or treatment.
• Poor Follow Up, where, after being discharged from the hospital, the patient is left without adequate check-ins or guidance.
• Worse Access to Services either due to distance, cost, or language and cultural barriers.

The HRRP considers readmission rates – the numbers of people who are hospitalized within 30 days of a previous hospitalization – to be a measure of the quality of a hospital’s care. It aims to use fines and lost funding as a “stick” to prevent hospitals from cutting corners.

As stated on its Medicare page, the HRRP mainly looks at readmission rates for:

• Acute Myocardial Infarctions and Heart Failure (Heart Attacks)
• Chronic Obstructive Pulmonary Disease (COPD, or Heart Disease)
• Pneumonia
• Coronary Artery Bypass Graft Surgery
• Elective Primary Total Hip Arthroplasty and/or Total Knee Arthroplasty

Readmission Rate Calculations

These statistics are entered into algorithms that determine the quality level of the hospital and any pricing changes or fines. The algorithms also look at other types of readmissions like unplanned, all-cause readmissions occurring within 30 days of the last hospitalization. A hospital can contest a ruling to the Centers for Medicare and Medicaid Services and get feedback, to make sure that things remain fair.

Although the HRRP addresses some of the problems that hospitals and patients face, it does not fit every situation. Rural areas have issues with access to care, and areas with higher rates of chronic diseases can skew the results.

Lupus and Hospital Readmission

One of the problems with how the readmission reduction program looks at the statistics is that some diseases, including systemic lupus erythematosus (SLE) manifest in a range of symptoms. The damage caused by SLE has the potential to effect every organ in the body and trigger readmissions.

Symptoms rise and fall in intensity as flares. Aside from diagnosis (which can itself be an ordeal) a person with SLE can find themselves returning to the hospital often. This happens for many different reasons not related to the quality of the hospital’s care or education.

Common Lupus Conditions that Lead to Readmission

Cardiovascular (Heart) disease is one of the biggest risk factors for hospital readmission, and people with lupus are at an increased risk of developing this condition.  Lupus damages cells in the heart or the arteries, which can lead to heart disease.

Additionally, some lupus medications (including Hydroxychloroquine) increase the risk of heart disease. It is very likely for someone with lupus to find themselves needing a hospitals’ help for heart disease, independently of a hospital’s quality of care.

Kidney disease is also a big risk factor for hospital readmission. Lupus commonly damages the kidneys leading to a particular form of lupus called lupus nephritis. Kidney damage requires management both at home and in a hospital and can require:

• medications
• medical procedures
• lifestyle changes
• specific diets

Still, the challenges and variability of kidney disease can still lead to readmissions.

The Results of the Hospital Readmission Program

The HRRP wasn’t perfect. For one thing, the program did not offer training and procedures on treating “the whole patient.” It also did not educate patients, tailor treatment plans to the patient’s lifestyle and means, and express the empathy needed to bring the complicated medical information home.

However, it did offer a huge amount of funding to hospitals willing to test out new strategies for reducing readmissions. That did seem to have an effect:

Early data in 2011 indicated that the rates for readmission, overall, fell from 19% to 17.5%. In real terms, that means an estimated 150,000 hospital readmissions were eliminated.

In general, the advantages and disadvantages of the current HRRP system have become clear.

Pros of HRRP

HRRP brought different care teams together and encouraged coordination between healthcare professionals. Collaboration between healthcare providers led to better strategies, better follow-up, and more confident, healthier patients.

HRRP increased awareness of the problems of hospital readmission to hospitals, insurers, and the public. This improved general conditions.

The program encouraged hospitals to pay attention to and measure the whole patient experience, not just the direct result of a hospital procedure or intervention. Because of this expanded viewpoint, hospitals were more motivated to assess, plan out, and create treatment plans that focus on the patient and their life. Caregivers and other support structures suddenly got a lot more attention.

Overall, HRRP encouraged more tailoring of treatment and monitoring of each patient. This has shifted healthcare (in America) away from the “fee-for-service” model and towards a value-based system.

Cons of HRRP

An only 1% drop in hospital readmission is just a drop in the ocean. And the program’s detractors aren’t sure that it’s worth it.

Indeed, critics note that there hasn’t been much of a change in length of stay and mortality. For pneumonia and heart attacks, it seemed, the length of time someone stays in the hospital and the rate of actual complications may be more important, overall, than the rate of readmission, and critics wonder if this should be measured instead.

The causes of readmission may not be related to the hospital’s quality of care.

After all, if someone comes to the hospital with heart failure, leaves, and then within a month falls at home and breaks their hip, that’s not the hospital’s fault. It could well just be random chance, or due to a common factor such as age or chronic illness. It may also actually be the hospital’s fault, as a result of some lack of education or care – there is no real way to know this from the data alone.

What is and isn’t considered a “readmission” might be arbitrary.

Some conditions related to a hospital’s quality of care might occur after the 30-31-day timeframe. Some of the potential readmissions are not classified as such, such as planned bypass surgery. Critics call for a better definition of what, exactly, a readmission is.

HRRP may actually hurt hospitals serving vulnerable populations.

The HRRP did not originally account for the fact that people with lower incomes or members of a sexual or racial minority are more vulnerable to health risks. These social determinants of health have serious challenges to proper care.

A hospital serving these communities might see more hospital readmissions because of their status of the patients. Under the HRRP these hospitals are at risk of receiving less funding.

HRRP might encourage longer hospitalizations, which can be traumatic.

Patients lose time, become stressed, and can have lowered mental health. The burdens of hospital stays can be psychological, physical, and financial. The goal, critics say, should be to reduce both admissions and stay length.

HRRP and Lupus

Readmission rates were found to be curtailed in lupus after a similar program focused on “post-discharge intervention.”  In the study, 132 hospitalizations were monitored over 8 months. 73 of these involved the nurses at the clinic reaching out to the patients afterwards. They offered education, guidance, and planning future visits. The 30-day readmission rate came out to 19% in the intervention group, compared to a non-intervention readmission rate of 29%. 

Overall, the HRRP is a work in progress, though, and is looking at ways to improve its policies.

Staying out of the Hospital: What You Can Do

Lupus has many co-morbid conditions, risks of infections, and symptoms. Hospitalization for lupus can appear to be difficult to avoid. But going into a hospital setting can be a major issue for people with lupus, costing time, complicating schedules, and traumatizing both patients and family. Plus, there is a risk of catching a disease from the hospital.

Adhering to diets and to other medical advice will help a great deal. Using the support systems available to you, including medical devices, support networks, and caretakers, can provide some of the care in the home that a hospital would otherwise provide. Take care of yourself as best you are able.

When you do have to go into the hospital, do your research before you go. Advocate for the care that you need, and listen to any medical instruction that will help you. Take notes.

It’s a hard fight, and some days are better than others. But, you’ve got this.