Engaging Patients and Caregivers in a Transdisciplinary Effort to Improve Outpatient Parenteral Antimicrobial Therapy

Abstract

In the United States, home-based outpatient parenteral antimicrobial therapy (h-OPAT) frequently involves patients and their caregivers performing routine daily medication infusions and intravenous (IV) catheter care. Although patients and caregivers receive support and training from home infusion therapy agencies, they have no formal training in administering IV medications and performing IV catheter maintenance. Patients receiving h-OPAT are at risk of complications from the IV catheter, the antimicrobial agents, and the underlying infection, especially if they do not appropriately perform IV catheter maintenance or infusions [1, 2]. Understanding how to prevent these adverse effects is essential.

Recent work has highlighted the importance of close monitoring by infectious diseases physicians within 2 weeks of hospital discharge to reduce adverse outcomes [3–5]. National and international guidelines recommend close monitoring of OPAT patients [1, 2]. However, in reality, limitations in care coordination across healthcare systems frequently results in the suboptimal care of h-OPAT patients [6]. Identifying barriers to and strategies for safe h-OPAT care is essential in improving care.

As patients and caregivers perform day-to-day antimicrobial delivery and IV catheter maintenance in h-OPAT, understanding the patient experience is necessary to identify barriers to and strategies for safe h-OPAT care. We have previously performed semistructured interviews and home-based observations among adult patients on h-OPAT and have demonstrated that barriers including performing IV catheter care outside of the well structured setting of the hospital or office, the complicated nature of h-OPAT-related tasks, and confusion over the roles of healthcare workers are barriers to safe h-OPAT care [7–9].

Barrier identification and mitigation (BIM) is a manner of systematically identifying and prioritizing barriers to safe care, in a focus group-style interaction, by ranking those of the highest importance [10], through use of participatory design [11]. However, it has been infrequently used to assess barriers to patient safety in the home or with input from patients and caregivers. We performed a proactive risk assessment using an interactive in-person BIM from both healthcare workers and h-OPAT patient and caregiver perspectives to prioritize barriers and strategies for safe h-OPAT.

METHODS

Johns Hopkins Hospital (JHH) discharges more than 2000 patients on h-OPAT annually. Eligible patient and caregiver participants included (1) any patient who had received h-OPAT after discharge from JHH or (2) the caregiver of the patient. Eligible healthcare worker participants included those involved in the referral or care of patients on h-OPAT including home care coordinators, home infusion pharmacists, home infusion nurses, and home infusion administrators. The Institutional Review Board at the Johns Hopkins University School of Medicine approved the study.

We previously identified barriers to the safe provision of h-OPAT based on semistructured interviews with 40 patients receiving h-OPAT and through the observations of 20 patients in the home while performing OPAT-related tasks (Appendix) [7–9]. For the current work, we convened 4 groups to go through an in-person group BIM between May and July 2019. Each contained 4 to 8 participants and each session lasted approximately 2 hours. Participants were provided a $50 gift card for their efforts. Each group was led by an infectious diseases physician with expertise in OPAT (S.C.K.) and a research coordinator (A.S.). Two groups included patients who had received h-OPAT and their caregivers, 1 included home care coordinators, and 1 enrolled home infusion staff members. Eligible patients and caregivers included those who enrolled in a prospective cohort of h-OPAT patients [12] or in the semistructured interviews or home-visit observation studies within the last year (of 29 patients approached).

Group members were first presented with a list of barriers to rank on a scale of 0 to 10 to anchor the later discussion (Appendix). For frequency, low scores meant the barrier never occurred. For significance, low scores meant the barrier was of no concern. For ease-of-mitigation, low scores meant the barrier would be too difficult to mitigate due to cost, manpower, resources, legal or insurance constraints, or other factors. Participants were then asked to multiply the frequency, significance, and ease-of-mitigation scores and to note the 3 highest-scoring barriers. After participants completed the ranking process, each verbally presented the 3 barriers with the highest rankings to the group. Participants then discussed each of the barriers and suggested strategies. Ranked barriers and strategies were consolidated across the 4 groups.

RESULTS

Table 1 demonstrates the composition of each of the 4 groups. Of a total population of 24 participants, 7 were patients and 3 were caregivers. Overall, 75% of the participants were women and 70% were white.

Participants identified barriers and mitigation strategies when receiving h-OPAT (Table 2). The top 2 barriers across the 4 groups were each proposed by 10 of the 24 participants and were as follows: (1) “Healthcare providers may not always communicate with each other about a patient’s care, so may be unaware of how the patient is doing,” and (2) “Instruction is rushed.” Suggestions to improve healthcare worker communication included standardizing communication protocols for OPAT care options, expanded access to medical records for home infusion agencies in different health systems, scheduling follow-up appointments before discharge, and having patients assist with transmitting information by providing documentation to members of the healthcare team. To ensure that instructions are not provided hastily at the time of hospital discharge, suggestions included identifying patients requiring parenteral therapy early in their hospital course and development of a discharge plan as soon as patients potentially requiring parenteral therapy are identified, providing instructions to patients targeted to the patient’s education or abilities well before hospital discharge, and providing written and visual instruction including handouts and videos.

Eight participants listed “The patient is unsure how to keep their IV line dressing dry while bathing” as one of the most significant barriers, including 6 patients and caregivers. Several products for keeping IV dressings dry and intact were discussed, including adherent cling wrap and taping clean plastic bags over dressings. Other suggestions included providing supplies to patients in the hospital upon discharge, evaluating dressings more frequently, and using a detachable shower head to direct the flow of water away from the dressing.

Six participants listed a lack of standardized instructions. Solutions included having standardized instructions available to patients, caregivers, inpatient nurses, and home infusion nurses in the form of written checklists and videos.

DISCUSSION

Through a novel approach including patients and caregivers to undergo a formal BIM process to identify and mitigate barriers to safe h-OPAT, we identified important and often unrecognized obstacles to safety. Major barriers included practical challenges with protecting IV catheters from moisture, a lack of streamlined communication between healthcare providers, hastily provided instructions, and not providing relevant instructions to all relevant stakeholders (eg, patients, caregivers, and home infusion nurses). Although there was no consensus around the best approach to protect IV catheter dressings, several key strategies were identified to reduce communication barriers. Some of these included initiating training as soon as it becomes likely that a patient will need h-OPAT, tailoring instructions to a patient’s previous experiences, practicing infusions and line care before hospital discharge, and ensuring that patients have access to written instructions and videos.

Communication barriers between healthcare providers (eg, home infusion staff and ordering physicians) were problematic. Therefore, (1) streamlined communication pathways and checklists for inpatient nursing, patients and caregivers, and home infusion nurses, (2) improving access of home infusion staff to medical records, (3) and clearly designating the ordering physician and their contact information were underscored as essential for improving communication.

By performing a structured assessment of barriers to safe h-OPAT, we showed that it was important to involve all stakeholders in the process, especially patients and caregivers. Opinions of OPAT patients and caregivers have been sought in prior qualitative research, but primarily in the United Kingdom, where most infusions are performed by home nurses [13–15]. With the exception of our group [7–9], few have used patients to identify specific barriers to appropriately maintaining the IV catheter and infusing medications. We found that patient insights were essential in identifying barriers and solutions, because they emphasized day-to-day management concerns (in particular, concerns about bathing) to a greater extent than the healthcare workers.

Our study has several limitations. Our findings are reflective of findings in a single hospital system using a single modality of OPAT delivery (home infusion), and barriers and solutions may differ across different populations and home environments (eg, urban versus rural) as well as OPAT delivery mechanisms (ie, outpatient infusion, skilled nursing facilities). In addition, patient and caregiver participants may not be representative of all h-OPAT patients because volunteers may be more engaged in their care. Our qualitative study was hypothesis-generating, and future studies should be performed to see whether the proposed strategies may be effective in preventing OPAT complications. Alternatively, organizations could perform BIM to identify barriers to and strategies for safe OPAT care in their setting.

CONCLUSIONS

Home-based outpatient parenteral antimicrobial therapy is a complicated process with numerous potential barriers that may impact patient safety. We found that BIM can successfully identify barriers as well as potential solutions through the inclusion of patients and caregivers and diverse healthcare providers. This work serves as a road map to investigate other processes in healthcare where understanding patient experiences is integral to identifying barriers.

Supplementary Data

Supplementary materials are available at Open Forum Infectious Diseases online. Consisting of data provided by the authors to benefit the reader, the posted materials are not copyedited and are the sole responsibility of the authors, so questions or comments should be addressed to the corresponding author.

Acknowledgments

We acknowledge the assistance of the Johns Hopkins Home Care Group staff in recruiting participants.

Author contributions. S. C. K. designed the study and study tools, collected data, analyzed data, interpreted data, and wrote the manuscript. P. T. assisted in data interpretation and reviewed the manuscript. A. S assisted in study tool design, collected data, and reviewed the manuscript. D. W. assisted in data interpretation and reviewed the manuscript. S. E. C. assisted in study design, data interpretation, and reviewed the manuscript. A. P. G. assisted in study design, data interpretation, and reviewed the manuscript.

Financial support. This work was funded by the Agency for Healthcare Research and Quality (K08HS025782; to S. C. K.).

Potential conflicts of interest. All authors: No reported conflicts of interest. All authors have submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest.

References