Background

Although readmission following hospitalization for heart failure (HF) has received increasing attention, little is known about its root causes. Prior investigations have relied on administrative databases, chart review, and single-question surveys.

Methods and Results

We performed semi-structured 30-60 minute interviews of patients (n=28) readmitted within 6 months of index HF admission. Established qualitative approaches were used to analyze and interpret data. Interview findings were the primary focus of the study but patient information and provider comments from chart data were also consulted. Patient median age was 61 years, 29% were non-white, 50% were married, 32% had preserved ejection fraction, and median time from discharge to readmission was 31 days. Reasons for readmission were multi-factorial and not easily categorized into mutually exclusive reasons. Five themes emerged as reasons cited for hospital readmission: distressing symptoms, unavoidable progression of illness, influence of psychosocial factors, good but imperfect self-care adherence, and health system failures.

Conclusions

Our study provides the first systematic qualitative assessment of patient perspectives regarding HF readmission. Contrary to prior literature and distinct from what we found documented in the medical record, patient experiences were highly heterogeneous, not easily categorized as preventable versus not preventable, and not easily attributed to a single cause. These findings suggest that future interventions designed to reduce HF readmissions should be multi-faceted, systemic in nature, and integrate patient input.

Keywords: heart failure, patient centered care, patient readmission, qualitative research, systems of care

Patients

Patients were recruited from an academic referral hospital and a community-based hospital. Patients discharged with a primary discharge diagnosis for HF who were then readmitted for any cause in the subsequent 180 days were eligible for the study. Exclusion criteria included less than 18 years of age, cognitive impairment, lack of legal capacity to consent, re-admitted for a planned procedure (e.g. elective implantable cardioverter defibrillator placement), hospital discharge before the interview could be conducted, non-English speaking, or deemed inappropriate by hospital physician of record. Admissions to the academic referral hospital inpatient cardiology services were manually reviewed on weekdays from February 28 to May 13, 2011 for evidence in the electronic health record of hospitalization in the past 180 days with a primary discharge diagnosis of HF (as determined by the discharge summary) and assessment of other eligibility criteria. All admissions to the community-based hospital were electronically cross-matched against the integrated health care system HF database for HF hospitalization in the past 180 days (by ICD-9 codes) from June 4, 2010 until March 25, 2011 followed by manual review of the electronic health record for confirmation of index hospitalization HF discharge diagnosis and other eligibility criteria; of note, due to technical issues with the screening process that required reprogramming the electronic match process as well as initial understaffing, the majority of patients at the community hospital were recruited in latter months of screening. The attending physician of record was approached prior to patient contact. Eligible patients were approached, consented, and interviewed within the next 24 hours while they were still inhospital. All patients recruited at the academic hospital agreed to participate; 2 patients recruited at the community hospital declined to participate. This study was reviewed and approved by the Kaiser Permanente Institutional Review Board, the Exempla Saint Joseph Hospital Institutional Review, and the Colorado Multiple Institutional Review Board.

Data Collection - Interviews

Due to the paucity of patient-centered assessments of HF readmission in the existing published literature, we chose a qualitative approach to identify themes that could be further explored in future quantitative research. In-depth semi-structured open-ended interviews were conducted in the patient's hospital room by a member of the research team (J.H.R., A.H., L.W., L.A.A.) using an interview guide (Appendix A) containing 23 open-ended questions as well as follow-up probes to elicit further clarification. The interview guide was designed to explore inpatient experience during the index hospitalization and discharge transition, medical follow-up and care seeking behavior between hospitalizations, experience during the readmission, adherence (diet, fluid, medications, and appointments), psychosocial issues, support in the post-discharge environment, physical activity, and perceived causes and precipitants of readmission. Interviews typically lasted between 30-60 minutes. Patients received a $25 gift card for participation. Four patients requested that their caregiver be present at the interview.

Data Collection - Chart Review

A detailed chart review was also conducted for each patient in the study to compare with the information from the interviews and gather demographic, diagnostic, and post discharge activities. The medical record was viewed from the date of the index HF admission through the discharge date of the readmission (L.A.A.). Data collected through the chart abstraction were entered into a spreadsheet and included demographics, past medical history, etiology of HF, left ventricular ejection fraction, home medications, inpatient therapies and procedures, and outpatient and emergency visits between the hospitalizations. Also included were any clinicians’ remarks about reasons for readmission.

Analysis of Interviews

Interviews were de-identified and transcribed by a member of the research team (J.B.) using a combination of direct quotes, paraphrasing, and summarization. These were then organized and coded in qualitative software (ATLAS.ti version 5.5, Scientific Software Development GmbH, Berlin, Germany). Analysis of patient interviews used largely a deductive approach because the semi-structured interviews were designed to explore issues found in previous research to be related to HF readmission. We also used inductive methods to identify additional themes that emerged during the interviews. Two primary members of the research team performed the first and second level coding (J.H.R., J.B.). Intermittent meetings were held with the other members of the team to confer about the codes, quotes, and interpretation of quotes and decide when saturation of key findings had been reached.

Analysis of Chart Review and Comparison with Interviews

Chart information was reviewed and discussed by the team to describe the sample as well as identify information that could be compared with the findings from the patient interviews. Patient and clinician data were compared side-by-side in order to identify any cases that reflected congruence or incongruence, conflicts, or discrepancies between accounts about the reasons for patient readmission. Chart documentation was also compared for self-care-related issues and social factors with patient interviews.

Participants

We recruited 28 patients, 8 from the community-based hospital and 20 from the academic referral hospital. Overall, patients were representative of a broad range of the HF population,¹⁷ as summarized inTable 1. Compared to the community-based hospital, patients from the academic center were younger, had lower mean LVEF, and included 2 patients with a left ventricular assist device and 1 patient who had undergone heart transplantation with subsequent cardiac allograph vasculopathy. HF exacerbation was the primary cause of admission for all index hospitalizations. All but one patient was admitted from home. Mean length of index stay was 5 days. At index hospital discharge, 2 patients went to a skilled nursing facility and another 3 went home with home health care. Mean time from index hospital discharge to readmission ranged from 3 to 166 days, with a median of 31 days. In the intervening period, 68% of people had at least one clinic visit, occurring at a median of 6 days following hospital discharge. For the readmission, median length of stay was 6 days. There were no in-hospital deaths during readmission.

Reasons for Readmission

Based on patient experiences reported in the interviews, reasons for readmission coalesced into 5 main themes: distressing symptoms, unavoidable progression of illness, psychosocial factors, adherence with self-care recommendations, and health system failures. Thirteen patients stated the index admission was different from the current readmission; 10 patients stated they were admitted for the same reason. Eight patients indicated the readmission was preventable, 6 felt it was unavoidable, and fourteen were not sure or did not give a direct response to the question. While not all patients were able to give definitive answers on the preventability of their readmission, all patients pointed to one of the 5 main themes when discussing ways to prevent re-admission. In comparing reasons for readmission, there were no remarkable differences between those admitted ≤ 30 days from their last admission with those admitted > 30 days. The following sections describe our results in detail; accompanying quotes can be found inTable 2.

Patient and Provider Comparison on Reasons for Readmission

Thirteen of the patient interviews and medical record data had congruent reasons for patient readmission; 12 cases had too little information or included information that was not comparable and only 3 cases had conflicting accounts. Among the 9 patients who felt they had left the hospital too early, we found that only one provider noted that it was possible that the patient may have been discharged prematurely (although this is not a routine assessment completed by providers). Few charts showed evidence that the physician of record inquired in depth into patients’ social support systems and post-discharge environment. A couple of patients who reported excellent adherence behavior also expressed their clinicians did not trust the patients’ reported behavior.

Heterogeneity and Complexity, Not Isolated Preventable Causes

For quality measures and intervention design purposes, much effort has been put into categorizing readmissions as either preventable or unpreventable.^5,9,19 Analysis of interviews showed that responsibility for readmission can reside with the patient, individual providers, the health care system, or simply may be a consequence of disease progression; interviewed patients usually implicated a combination of several or all of these at some point. Thus, the common practice of categorizing readmissions as preventable or non-preventable is largely artificial. Additionally, we found a particular paucity of descriptions in the medical record of the post-discharge environment.

Health care delivery systems have many temporally affected and interdependent components that make quality improvement challenging.²⁰ Therefore, we recommend a reframing of the readmission discussion to one that better recognizes the heterogeneity, complexity, and interrelatedness of a multitude of factors that lead to readmission. The implication is that alternative types of data (e.g. longitudinal, patient and provider perspectives, multilevel) are likely needed to truly understand the complex nature of readmission causes and inform interventions to prevent them. Although this study involved a relatively small sample size, we believe that more patient interviews and greater population heterogeneity is only likely to accentuate this principal finding.

Self-Care Shades of Gray

Although our interviews support a role for self-care and medical adherence in HF readmissions, the more dominant finding was that the issue of self-care seemed to be over emphasized within the readmission discussion. Reported adherence to diet, fluid restrictions, exercise recommendations, medications, and medical appointments was not perfect but, based on interpretation of interview responses; patient adherence was perceived overall as good by our team. Other qualitative work investigating patients living with HF have shown that adherence to the medical regimen is “hard work,” and that physicians and patients had divergent understandings of that work.²¹ Other objective studies of adherence have frequently documented significant nonadherence.^22,23 This has important implications for how much we pay attention to the self-care “problem” as it contributes to readmission rates.

In our study some patients clearly felt mistrust or perceived a lack of understanding from the medical community when it came to self-care. Literature suggests that a trusting patient-provider relationship is a key component to adherence²⁴ and that mistrust or potentially adversarial dynamics could be counterproductive. This all implies that education needs to go beyond merely telling patients what to do; adherence and self-care education must work more comprehensively to deal with factors that underlie nonadherence. Ultimately, our patients’ insights suggest that readmission initiatives should reframe the discussion from an all-or-none view of adherence to a more nuanced approach reflective of the real world. We recommend that future research into post-discharge adherence shift from individual blame toward an empowerment and systems approach that considers the big picture.

Patient Recommendations for Health System Changes

Nearly all patients, regardless of reasons for readmission, highlighted failures of the health care system to adequately meet their perceived needs. Some patients said they didn't feel ready to be discharged. Most patients reported (and chart reviews confirmed) that they had follow-up visits scheduled after hospital discharge but acute medical issues often arose before the follow-up happened. Only few of the patients in our sample were currently enrolled in some kind of home health services, despite relatively advanced disease. Several patients reported that their local physicians did not have adequate expertise to manage their HF and/or the communication between the acute care and outpatient care was lacking. Taken together, these insights lead us to believe that successful transitional care policies are likely to promote multimodal interventions that start early in the hospitalization, include contact within 48-72 hours after discharge, facilitate communication between various health care providers, and address broad patient concerns (i.e. medical, social, economic) in the post-discharge environment.^25,26

Overall, the team found it surprisingly difficult to compare patient perspectives derived from interviews to provider perspectives derived from chart review, questioning the comprehensiveness and value of chart review in isolation. This appeared to be largely attributable to the minimal amount of information that providers document regarding the patient-oriented topics we explored. Unfortunately, within the current structure of inpatient health care, providers are not necessarily incentivized to focus on these issues. If policy and reimbursement changes continue to focus attention on transitions of care and readmissions, we would expect the medical record to better reflect clinician focus on causes of readmission and the post-discharge environment and to increase the role of case management / social work.

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Supplementary Materials