Frequently Hospitalized Patients’ Perceptions of Factors Contributing to High Hospital Use
BACKGROUND: A small proportion of patients accounts for a large proportion of hospitalizations.
OBJECTIVE: To obtain patients’ perspectives of factors associated with the onset and continuation of high hospital use.
DESIGN: Qualitative research study where a research coordinator conducted one-on-one semi-structured interviews. A team of researchers performed inductive coding and analysis.
SETTING: A single urban academic hospital.
PARTICIPANTS: Patients with two-unplanned 30-day readmissions within 12 months and one or more of the following: ≥1 readmission in the last six months, a referral from a clinician, or ≥3 observation visits.
RESULTS: Overall, 26 participants completed the interviews. Four main themes emerged. First, major medical problems were universal, but the onset of frequent hospital use varied. Second, participants perceived fluctuations in their course to be related to psychological, social, and economic factors. Social support was perceived as helpful and participants benefited when providing social support to others. Third, episodes of illness varied in onset and generally seemed uncontrollable and often unpredictable to the participants. Fourth, participants strongly desired to avoid hospitalization and typically sought care only after self-management failed.
CONCLUSIONS: Emergent themes pointed to factors which influence patients’ onset of high hospital use, fluctuations in their illness over time, and triggers to seek care during an episode of illness. These findings enable patients’ perspectives to be incorporated into the design of programs serving similar populations of frequently hospitalized patients.
© 2019 Society of Hospital Medicine
Course Fluctuates over Time and is Related to Psychological, Social, and Economic Factors
Participants identified psychological stress, social support, and financial constraints as factors which influence the course of their illness over time. Deaths in the family, breakups, and concerns about other family members were mentioned as specific forms of psychological stress and directly linked by participants to worsening of symptoms. Social support was present for most, but not all, participants, with no appreciable difference based on whether the participant had sickle cell disease. Social support was generally perceived as helpful, and several participants indicated a benefit to their own health when providing social support to others. Financial pressures also served as stressors and often impeded care due to lack of access to medications, other treatments, and housing.
Onset and Progression of Episodes Vary, but Generally Seem Uncontrollable
Regarding the onset of illness episodes, some participants described the sudden, unpredictable onset of symptoms, others described a more gradual onset which allowed them to attempt self-management. Regardless of the timing, episodes of illness were often perceived as spontaneous or triggered by factors outside of the participant’s control. Several participants, especially those with sickle cell disease, mentioned a relationship between their symptoms and the weather. Participants also noted the inconsistency in factors which may trigger an episode (ie, sometimes the factor exacerbated symptoms, while other times it did not). Participants also described having a high symptom burden with significant limitations in activities of daily living during episodes of illness. Pain was a very common component of symptoms regardless of whether or not the participant had sickle cell disease.
Individuals Seek Care after Self-Management Fails and Prefer to Avoid Hospitalization
Participants tried to control their symptoms with medications and typically sought care only when it was clear that this approach was not working, or they ran out of medications. This finding was consistent across both groups of participants (ie, those with and those without sickle cell disease). Many participants described very strong preferences not to come to the hospital; no participant described being in the hospital as a favorable or positive experience. Some participants mentioned that they had spent major holidays in the hospital and that they missed their family. No participant had a desire to come to the hospital.
DISCUSSION
In this study of frequently hospitalized patients, we found four major themes that illuminate patient perspectives about factors that contribute to high hospital use. While some of our findings corroborate those of previous studies, other emerging patterns were novel. Herein, we summarize key findings, provide context, and describe implications for the design of models of care for frequently hospitalized patients.
Similar to the findings of previous quantitative research, participants in our study described having a significant medical condition and typically had multiple medical conditions or complications.4-6 Importantly, some participants described having a major medical problem which did not require frequent hospitalization until another medical problem or complication arose. This finding suggests that there may be an opportunity to identify patients with significant medical problems who are at elevated risk before the onset of high hospital use. Early identification of these high-risk patients could allow for the provision of additional support to prevent potential complications or address other factors which may contribute to the need for frequent hospitalization.
Participants in our study directly linked psychological stress to fluctuations in their course of illness. Previous research by Mautner and colleagues queried participants about childhood experiences and early life stressors and reported that early life instabilities and traumas were prevalent among patients with high levels of emergency and hospital-based healthcare utilization.15 Our participants identified more recent traumatic events (eg, the death of a loved one and breakups) when reflecting on factors contributing to illness exacerbations; early life trauma did not emerge as an identified contributor. Of note, unlike Mautner et al., we did not ask participants to reflect on childhood determinants of disease and illness specifically. Our findings suggest that psychological stress contributes to illness exacerbation, even for those patients without other significant psychiatric conditions (eg, depressive disorder, schizophrenia). Incorporating mental health professionals into programs for this patient population may improve health by teaching specific coping strategies, including cognitive-behavioral therapy for an acute stress disorder.16,17
Social support was also a factor related to illness fluctuations over time. Notably, several participants indicated a benefit to their own health when providing social support to others, suggesting a role for peer support that may be reciprocally beneficial. This approach is supported by the literature. Williams and colleagues found that patients with sickle cell anemia experienced symptom improvement with peer support;18 while Johnson and colleagues recently reported a reduction in readmissions to acute care with the use of peer support for patients with severe mental illness.19
Financial constraints impeded care for some patients and served as a barrier to accessing medications, other treatments, and housing. Similar to the findings of prior quantitative research, our frequently hospitalized patients had a high proportion of patients with Medicaid and low proportion with private insurance, suggesting low socioeconomic status.9,20 We did not formally collect data on income or economic status. Interestingly, prior qualitative studies have not identified financial constraints as a major theme, though this may be explained by differences in study populations and the overall objectives of the studies.15,21 Importantly, the overwhelming majority of programs for frequently hospitalized patients identified in a recent systematic review included social workers.7 Our findings support the need to address financial constraints and the use of social workers in models of care for frequently hospitalized patients.
Many participants in our study felt that the factors contributing to exacerbations of illness were either inconsistent in their effect or out of their control. These findings have similarities to those from a qualitative study by Liu and colleagues in which they interviewed 20 “hospital-dependent” patients over 65 years of age.21 Though not explicitly focused on factors contributing to exacerbations, participants in their study felt that hospitalizations were generally inevitable. In our study, participants with sickle cell disease often identified changes in the weather as contributing to illness exacerbations. The relationship between weather and sickle cell disease remains incompletely understood, with an inconsistent association found in prior studies.22
Participants in our study strongly desired to avoid hospitalization and typically sought hospital care when symptoms could not be controlled at home. This finding is in contrast to that from the study by Liu and colleagues where they found that hospital-dependent patients over 65 years had favorable perspectives of hospitalization because they felt safer and more secure in the hospital.21 Our participants were younger than those from the study by Liu and colleagues, had a high symptom burden, and may have been more concerned about control of those symptoms than the risk for clinical deterioration. Programs should aim to strengthen their support of patients’ self-management efforts early in the episode of illness and potentially offer home visits or a day hospital to avoid hospitalization. A recent systematic review found evidence that alternatives to inpatient care (eg, hospital-at-home) for low risk medical patients can achieve comparable outcomes at lower costs.23 Similarly, some health systems have implemented day hospitals to treat low risk patients with uncomplicated sickle cell pain.24,25
The heavy symptom burden experienced by participants in our study is notable. Pain was especially common. Programs may wish to partner with palliative care and addiction specialists to balance symptom relief with the simultaneous need to address comorbid substance and opioid use disorders when they are present.4,9
Our study has several limitations. First, participants were recruited from the medicine service at a single academic hospital using criteria we developed to identify frequently hospitalized patients. Populations differ across hospitals and definitions of frequently hospitalized patients vary, limiting the generalizability of our findings. Second, we excluded patients whose preferred language was not English, as well as those disoriented to person, place, or time. It is possible that factors contributing to high hospital use differ for non-English speaking patients and those with cognitive deficits.
