Patient- and Family-Centered Outcomes After Intensive Care Unit Admission

We conducted a parallel convergent mixed-methods cohort study exploring the nature of patient and family experience in the ICU from September 2015 through February 2019 in a multidisciplinary mixed surgical and medical ICU. Family members of patients admitted to the shock trauma ICU for more than 24 hours were eligible for study enrollment. Our primary outcome was the association between time or day of admittance (encounter-level data) and scores on the Family Satisfaction With Care in the Intensive Care Unit (FS-ICU) survey.⁴ 

We also assessed the relations of prespecified predictors (additional encounter-level data) with FS-ICU scores and the relationship between scores on the Patient Experience Survey (PES) and the FS-ICU. Finally, we collected and qualitatively analyzed free-text comments from the FS-ICU and described how the data related to the ICU experience.

Qualifying participants were adults aged 18 years and older who were able to read and speak English. Patients without eligible family members (less than 18 years old or did not speak English) were excluded. We enrolled and interviewed only one family member per patient admitted to the study ICU (a shock trauma ICU at a large hospital in the western United States) at the time of transfer from the shock trauma ICU to an acute care area. Members of the research team approached the family member for consent and the survey was administered the day after ICU transfer (Figure 1).

Families of patients who died during their shock trauma ICU admission received the satisfaction questionnaire by mail (including a prepaid return envelope) 6 weeks after the patient’s death. Study participants were selected from the family of each index patient according to the priority outlined in Figure 2 and described by Beesley et al.⁵  One family member per patient was enrolled with preference for the surrogate decision maker. If a higher-priority participant could not be located or did not provide consent, a lower-priority participant was enrolled instead.

Quantitative data, including patient age, sex, ethnicity, and additional encounter data (eg, ICU length of stay and ICU date and time of admission), were extracted from the electronic data warehouse via queries. Survey data from family participants included self-reported age, sex, relationship to patient, how often they saw the patient, and whether they cohabitated. All survey data were collected and stored using REDCap, a secure electronic-data-capture software tool hosted at the research site.⁶  The study was approved by the research facility’s institutional review board, with completion of the survey implying consent to participate in the study.

We chose the PES, a survey administered by the National Research Corporation, Press Ganey, and the FS-ICU 24,⁷  a validated 24-question survey that assesses family satisfaction, to administer to our cohort. The PES measures the patient’s perspective on their hospital stay and is included at the end of the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey.⁷  Whereas the parent HCAHPS survey consists of 43 questions tied to the overall hospitalization, when participants indicate they recall their ICU stay, the PES presents an additional 9 questions. Scores on the PES range from 0 to 4 with larger values indicating higher satisfaction. The PES was sent via mail to all eligible patients after the patient was discharged from the hospital. Common response rates for the PES are 25% or less.⁸ 

The FS-ICU 24 consists of 2 sections that assess satisfaction with overall care and decision-making. Scores range from 0 to 100 with higher scores indicating increased satisfaction.⁹  The FS-ICU was transcribed to a portable electronic device and administered via REDCap software. Additionally, as part of the FS-ICU, survey participants were asked 3 free-text questions that focused on how the ICU experience could be improved for visitors. The free-text questions included: Do you have any suggestions on how to make care provided in the ICU better? Do you have any comments on things we did well? Do you have any suggestions on how we could improve the ICU experience for you and your family member? Responses to these free-text comments were categorized as 0–1 comments or 2–3 comments, where blank responses or responses of “no,” “none,” or “NA” were also considered blank. Free-text responses and comments were then grouped and sorted into categories by using content analysis until thematic saturation was reached, thus allowing for a more robust description of the patient and family experience.

To test the association between the 4 admittance categories consisting of type of day (weekday or weekend) and time of day (day or night) with FS-ICU scores, we built a univariate quasi-Poisson regression model with a log link. In a sensitivity analysis, we estimated adjusted odds ratios by accounting for patient and participant characteristics. Patient characteristics included age, sex, Charlson Comorbidity Index, and whether the patient had died before the family member provided consent. Participants’ age, sex, race, and ethnicity also were included.

In exploratory analyses, we assessed the relationship between caregiver exposure and FS-ICU scores by using a quasi-Poisson regression model with a log link. Admitting physicians were categorized on the basis of their admitting frequency: low (1 admit) and moderate (2–9 admits). High-frequency providers (≥10 admits) remained as an individual contributor. Each patient encounter was apportioned out to registered nurses (RNs) according to the nurse who had the most interactions with the electronic health record during a standard shift (7 am to 7 pm). The RNs were divided into groups: low frequency (1–22 patients) and moderate frequency (23–70 patients). Nurses in the high-frequency group (≥71 patients) were left as individuals for the analysis.

We employed a Mann-Whitney U test to assess differences between PES and FS-ICU scores. For this purpose, the scores were normalized between 0 and 4. All descriptive data are reported as count (percent) or median (interquartile range). All analyses were conducted with R version 4.0.3. Statistical significance was set to a P value less than .05.

We analyzed the 3 free-text questions from the FS-ICU by using content analysis according to the guidelines suggested by House et al.¹⁰  Deidentified comments were reviewed in an electronic spreadsheet (Excel; Microsoft) and were coded using NVIVO12 (version 12.6.1.970).¹¹  Three independent investigators (Rachael Katz, MS, M.N.S., and P.M.G.) coded the comments. First, 2 of the researchers (M.N.S. and P.M.G.) independently categorized the coded data and compared their results. Discrepancies were discussed with a third researcher who acted as a moderator to obtain consensus on the coded data. The quotes were then grouped into themes.¹² 

A total of 404 family members were enrolled in the study. Of the 404 family members, 401 (99.3%) completed the FS-ICU survey and were included in the data analysis. The median age of the family members was 57 years and 69% were female. Half of the participants who took the survey were a spouse or significant other. Other family members consisted of parents (15%), siblings (5%), children (26%), and others (4%). Thirty-seven percent of the participants did not live with the patient at the time of the study (Table 1).

Of the 401 patients with a family member participant, 47% were female with a median age of 62 years. The majority (83%) were of White ethnicity, 8% were Latinx ethnicity, and 9% were other/unknown. The median Charlson Comorbidity Index was 4 (range 2–7). In 19% of the dyads, the patient died before the family member provided consent to participate in the study. Patients spent a median of 2.7 days in the ICU. Forty-four percent were mechanically intubated, and they spent a median of 3 days receiving mechanical ventilation (Table 1).

Seventy percent of the patients were admitted during the work week and 30% during weekends. Of the patients admitted during the work week, roughly one-half were admitted during the day and one-half at night (Table 2).

The overall satisfaction with the ICU was high with a median normalized FS-ICU total score of 3.5 (range 3.0-3.7). Satisfaction with care was scored slightly higher than satisfaction with decision-making, 3.6 (range 3.2-3.9) and 3.3 (range 2.9-3.6), respectively. All but 2 questions, atmosphere of the ICU waiting room and how often doctors communicated about the family member’s condition, received a median score of 4.0.

Of the potential patients who may have received the HCAHPS survey, 17 responded to the PES, with little variation in scores. The sample estimate difference between FS-ICU and PES scores was statistically significant at –7.3 (95% CI, –11.5 to –3.1; P < .001). There were 125 respondents (31%) who made few (<2) comments on the FS-ICU, and FS-ICU subscores and total scores did not differ significantly between the groups with different response rates to free-text questions.

A total of 15 physicians were considered to have a high frequency of admittances for a combined total of 281 admits. Moderate-frequency physicians admitted 71 patients, and 52 physicians admitted only 1 patient during the study. A total of 164 RNs had time attributed to patient ICU encounters. There were 18 high-frequency RNs whose percentage of time attributed to patient care covered a range from 7% to 22%. Moderate-frequency RNs (n = 66) covered a median 59% of patient care, and low-frequency RNs (n = 80) provided a median of 25% of care.

There was no association between FS-ICU scores and day type (weekday or weekend) or time (day or night). This finding remained constant even after we adjusted the analysis for patient and participant characteristics (Table 2).

No associations were found between adjusted or unadjusted exposure to caregivers (eg, admitting physician or RN). Characteristics of the hospital encounter, including duration of mechanical ventilation, use of vasopressor medication, dialysis, or length of ICU stay, also did not affect FS-ICU scores.

The free-text comments were thematically organized into 3 main categories as follows: (1) communication and information, (2) personalization or the patient as expert, and (3) staff and environment. We provide overall descriptions in the text below and sample quotes in Table 3.

Themes about communication and information emphasized the importance of good communication between family members and hospital staff. Family members felt positive about an experience when they perceived being included in the decision-making process. Potential loss of information during shift change or missing visits from team members were a source of worry for family members. Representative comments follow:

Comments related to the themes of personalization were about individual concerns and how treatment plans affected patients or families directly. Participants expressed praise for experiences that seemed coordinated and seamless, whereas other comments voiced concern over rules related to visitation. Overall, participants seemed to appreciate being part of the ICU decision-making process and being seen as a valued member of the team. Another topic of concern was respecting the family and listening to them as experts in reference to the patient. Including the family in medical treatment plans appeared to contribute to the sense that the care team was listening and respecting the patient as a person. Representative comments follow:

Comments about staff indicated that bedside attitudes of clinicians were important for family experience. Although most comments were positive, a few participants shared negative comments. Patients and families noticed everything. Sometimes they indicated that the nurses “were cold” or “didn’t want to be there” and were “bothered every time a question was asked.” A few participants mentioned “eye-rolling,” “judgmental behavior,” and “heartless commentary.” All staff interactions including communication between caregivers (nurses and doctors, different specialization teams, and at shift changes) impacted the patient and family experience.

Comments about the environment focused on the layout of the family waiting area and available resources (water, restrooms, blankets), ease of access, cleanliness, and behavior of others sharing the space. Similarly, the waiting room environment, openness to families, and the availability of a way to “escape” were recurrent themes. Representative comments follow:

In this study, we undertook a rigorous quantitative assessment of factors associated with satisfaction among families of patients admitted to an ICU. We added a parallel, qualitative analysis exploring the nature of patient and family experience in the ICU to investigate an array of possible predictors of family satisfaction. To our knowledge, this is one of the first studies to apply mixed methods to modeling family experience in the ICU and is among a small number of studies that model family experience in broader patient populations. Overall, we were unable to find an association between objective measures of the hospitalization and patient and family satisfaction. Additionally, we report that lived experiences were grounded in satisfying basic human needs and better describe patient and family satisfaction. Lived experience seems to more accurately describe patient and family satisfaction than do the standard mean satisfaction scores generated from accepted survey tools, like the FS-ICU or PES. Communication with patients and families, personalized care, staff behavior, and the ICU environment were all important factors that related to family satisfaction.

Although the FS-ICU and PES are validated tools designed to measure the perceptions and experiences of family members of patients in intensive care, our results underscore the complexity and nuance required to completely understand patient and family satisfaction with an ICU experience. This is consistent with the findings in a German study by Schwarzkopf et al,¹³  who found significant family dissatisfaction with aspects of care in the ICU, communication, and the ICU waiting room atmosphere and environment. Similarly, our results suggest that simple alterations in the waiting room environment and humanistic behaviors could greatly enhance family satisfaction. Our results further support the conclusions by Lah et al¹⁴  that HCAHPS scores poorly represent family satisfaction in the ICU. The low response rate to the PES and HCAHPS is a limitation of these tools. Considering the content analysis of the free-text comments in our study, we argue that it is important to use mixed-methods studies to better characterize the relationship between patient and family experience, satisfaction, and measurable ICU outcomes.

We did not find an association between objective hospital factors and satisfaction as measured by the scored FS-ICU. Few available data assess relationships between family satisfaction and factors such as physician coverage, exposure time to specific nurses, time of ICU admission, and social worker or case management involvement. One previous study suggested that increasing illness severity is associated with higher satisfaction scores. Although it is unclear why increased satisfaction was associated with higher illness severity, one explanation may be the intensive involvement of ICU staff and personalized attention.¹⁵  Our qualitative analysis might also support this explanation in that a higher severity of illness would naturally mandate increased communication and personalization and result in families becoming more familiar with the ICU environment.

The categories and themes that emerged from the qualitative analysis were supportive of a link between satisfaction and patient-centered outcomes. Kane et al¹⁶  note that patients are often satisfied with various parts or elements of their health care interaction and not necessarily with all their care. The most common themes we identified focused on improving communication to include family members, working on nurse attitude and bedside manner, and addressing the noise and atmosphere of the waiting room.

Communication in the ICU facilitates shared decision-making, allowing patients (when possible) and their families to participate actively in care, and this relates to family satisfaction.¹⁷  Communication in the ICU includes nonverbal cues such as touch and empathy, which can provide immense comfort in these challenging circumstances.^18,19  The free-text comments in our study support empathy as a major component of communication and family satisfaction.

There is little evidence in the literature related to personalization of care in the ICU and its impact on health outcomes. Personalization of care may be vital to improving patient outcomes and satisfaction. Our qualitative analysis suggests that when health care staff customize therapies, adapt management strategies, and provide individualized emotional support to patients and families, satisfaction is enhanced. Munro and Savel²⁰  agree with our findings by suggesting that recognizing the patient and family as key partners in care is often perceived as integrating their preferences into the care plan. Personalized care in the ICU fosters a more compassionate, human-centered approach that optimizes medical treatment but also addresses the emotional and psychosocial needs of the critically ill patient.²¹ 

The qualitative analysis of our study implies that the ICU environment influences both patient outcomes and the experience of care. Others note that a negative environment can slow healing, increase anxiety, and overall provide a bad experience for the patient and family.²²  Additional studies exploring the link between ICU environment and patient outcomes, especially observations during the COVID-19 pandemic, would be enlightening.

In this study, we aimed to extend current knowledge about the interrelationships between ICU variables and satisfaction of family members of ICU patients. We suggest the lack of association between time of admission and satisfaction to mean that the ICU functions as it should consistently, 24 hours a day, 7 days a week. We believe our data provide insight into the importance of simple acts of humanism as important modifiers of patient experience—a burgeoning academic field with huge implications for research, health policy, and quality-improvement efforts.

Our study has several limitations. The study was terminated prematurely because of the COVID-19 pandemic, and changes in visitation policies may not reflect patient and family satisfaction with the current ICU environment and visitation policies. However, the importance of the waiting room environment and family involvement in medical decision-making most likely endures today. Our results could suffer from selection bias in that the people willing to participate in the study might have had predominantly positive things to say about their experience. However, our discovery of several negative comments mitigates this potential bias. Our study may lack generalizability or suffer from limitations owing to the small sample size common with qualitative analyses. Most of our cohort completed the free-text comments, thereby resulting in a larger-than-average qualitative sample size.

The ICU environment must foster a culture of safety, teamwork, respect, and patient-centeredness among ICU staff. Such a culture requires efficient communication and coordination among the multidisciplinary team and clear protocols for decision-making and crisis management. The environment of care in the ICU can significantly influence the healing process, the emotional well-being of patients and their families, and the performance and job satisfaction of health care providers. Thus, creating a supportive ICU environment is essential to providing high-quality critical care.

Family satisfaction in the ICU is best measured by a combination of validated surveys and subjective comments. Surprisingly, family satisfaction did not seem to be influenced by the time of admission or exposure to hospital staff. The qualitative data support the link between satisfaction and patient-centered outcomes. Ongoing efforts to engage with families to improve communication, personalize care, and humanize the environment are warranted.

The authors thank Rachael Katz, MS, for her assistance with data aggregation and analysis.