A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study.

BACKGROUND: Care partners of people with serious illness experience significant challenges and unmet needs during the patient's treatment period and after their death. Learning from others with shared experiences can be valuable, but opportunities are not consistently available. OBJECTIVE: This study aims to design and prototype a regional, facilitated, and web-based peer support network to help active and bereaved care partners of persons with serious illness be better prepared to cope with the surprises that arise during serious illness and in bereavement. METHODS: An 18-member co-design team included active care partners and those in bereavement, people who had experienced serious illness, regional health care and support partners, and clinicians. It was guided by facilitators and peer network subject-matter experts. We conducted design exercises to identify the functions and specifications of a peer support network. Co-design members independently prioritized network specifications, which were incorporated into an early iteration of the web-based network. RESULTS: The team prioritized two functions: (1) connecting care partners to information and (2) facilitating emotional support. The design process generated 24 potential network specifications to support these functions. The highest priorities included providing a supportive and respectful community; connecting people to trusted resources; reducing barriers to asking for help; and providing frequently asked questions and responses. The network platform had to be simple and intuitive, provide technical support for users, protect member privacy, provide publicly available information and a private discussion forum, and be easily accessible. It was feasible to enroll members in the ConnectShareCare web-based network over a 3-month period. CONCLUSIONS: A co-design process supported the identification of critical features of a peer support network for care partners of people with serious illnesses in a rural setting, as well as initial testing and use. Further testing is underway to assess the long-term viability and impact of the network.

"It helps us say what's important..." Developing Serious Illness Topics: A clinical visit agenda-setting tool.

BACKGROUND: Skillful communication with attention to patient and care partner priorities can help people with serious illnesses. Few patient-facing agenda-setting tools exist to facilitate such communication. OBJECTIVE: To develop a tool to facilitate prioritization of patient and care partner concerns during serious illness visits. PATIENT OR FAMILY INVOLVEMENT: Two family members of seriously ill individuals advised. METHODS: We performed a literature review and developed a prototype agenda-setting tool. We modified the tool based on cognitive interviews with patients, families and clinicians. We piloted the tool with patients, care partners and clinicians to gain an initial impression of its perceived value. RESULTS: Interviews with eight patients, eight care partners and seven clinicians, resulted in refinements to the initial tool, including supplementation with visual cues. In the pilot test, seven clinicians used the tool with 11 patients and 12 family members. Qualitatively, patients and care partners reported the guide helped them consider and assert their priorities. Clinicians reported the tool complemented usual practice. Most participants reported no distress, disruption or confusion. DISCUSSION: Patients, care partners and clinicians appreciated centering patient priorities in serious illness visits using the agenda-setting tool. More thorough evaluation is required. PRACTICAL VALUE: The agenda-setting tool may operationalize elements of good serious illness care.

Harnessing the Collective Expertise of Patients, Care Partners, Clinical Teams, and Researchers Through a Coproduction Learning Health System: A Case Study of the Dartmouth Health Promise Partnership.

The coproduction learning health system (CLHS) model extends the definition of a learning health system to explicitly bring together patients and care partners, health care teams, administrators, and scientists to share the work of optimizing health outcomes, improving care value, and generating new knowledge. The CLHS model highlights a partnership for coproduction that is supported by data that can be used to support individual patient care, quality improvement, and research. We provide a case study that describes the application of this model to transform care within an oncology program at an academic medical center.

Prioritizing Measures That Matter Within a Person-Centered Oncology Learning Health System.

BACKGROUND: Despite progress in developing learning health systems (LHS) and associated metrics of success, a gap remains in identifying measures to guide the implementation and assessment of the impact of an oncology LHS. Our aim was to identify a balanced set of measures to guide a person-centered oncology LHS. METHODS: A modified Delphi process and clinical value compass framework were used to prioritize measures for tracking LHS performance. A multidisciplinary group of 77 stakeholders, including people with cancer and family members, participated in 3 rounds of online voting followed by 50-minute discussions. Participants rated metrics on perceived importance to the LHS and discussed priorities. RESULTS: Voting was completed by 94% of participants and prioritized 22 measures within 8 domains. Patient and caregiver factors included clinical health (Eastern Cooperative Oncology Group Performance Status, survival by cancer type and stage), functional health and quality of life (Patient Reported Outcomes Measurement Information System [PROMIS] Global-10, Distress Thermometer, Modified Caregiver Strain Index), experience of care (advance care planning, collaboRATE, PROMIS Self-Efficacy Scale, access to care, experience of care, end-of-life quality measures), and cost and resource use (avoidance and delay in accessing care and medications, financial hardship, total cost of care). Contextual factors included team well-being (Well-being Index; voluntary staff turnover); learning culture (Improvement Readiness, compliance with Commission on Cancer quality of care measures); scholarly engagement and productivity (institutional commitment and support for research, academic productivity index); and diversity, equity, inclusion, and belonging (screening and follow-up for social determinants of health, inclusivity of staff and patients). CONCLUSIONS: The person-centered LHS value compass provides a balanced set of measures that oncology practices can use to monitor and evaluate improvement across multiple domains.

Psychometric assessment of the consideRATE questions, a new measure of serious illness experience, with an online simulation study.

OBJECTIVE: To assess the psychometric properties of the consideRATE questions, a measure of serious illness experience. METHODS: We recruited people at least 50 years old via paid panels online, with US-Census-based quotas. We randomized participants to a patient experience story at two time points. Participants completed a series of measures, including the consideRATE questions. We assessed convergent (Pearson's correlation), discriminative (one-way ANOVA with Tukey's test for multiple comparisons) and divergent (Pearson's correlation) validity. We also assessed intra-rater reliability (intra-class correlation) and responsiveness to change (t-tests). RESULTS: We included 809 individuals in our analysis. We established convergent validity (r = 0.77; p < 0.001); discriminative validity (bad/neutral stories [mean diff=0.4; p < 0.001]; neutral/ good stories [mean diff=1.3; p < 0.001]) and moderate divergent validity (r = 0.57; p < 0.001). We established sensitivity to change in all stories (bad/good [mean diff=1.52; p < 0.001]; good/bad [mean diff= -1.68; p < 0.001]; neutral/bad [mean diff= -0.57; p < 0.001]; good/neutral [mean diff= -1.11; p < 0.001]; neutral/good [mean diff= 1.1; p < 0.001]) but one (bad/neutral [mean diff= 0.4; p < 0.07]). Intra-rater reliability was demonstrated between time points (r = 0.77; p < 0.001). CONCLUSIONS: the consideRATE questions were reliable and valid in a simulated online test. PRACTICE IMPLICATIONS: the consideRATE questions may be a practical way to measure serious illness experience and the effectiveness of interventions to improve it.

User-Centered Design of the consideRATE Questions, a Measure of People's Experiences When They Are Seriously Ill.

CONTEXT: No brief patient-reported experience measure focuses on the most significant concerns of seriously ill individuals. OBJECTIVES: The objective of the study was to develop the consideRATE questions. METHODS: This user-centered design study had three phases. We reviewed the literature and consulted stakeholders, including caregivers, clinicians, and researchers, to identify the elements of care most important to patients (Phase 1). We refined items based on cognitive interviews with patients, families, and clinicians (Phase 2). We piloted the measure with patients and families (Phase 3). RESULTS: Phase 1 resulted in seven questions addressing the following elements: 1) care team attention to patients' physical symptoms, 2) emotional symptoms, 3) environment of care, 4) respect for patients' priorities, 5) communication about future plans, 6) communication about financial and similar affairs, and 7) communication about illness trajectory. Phase 2 participants included eight patients, eight family members, and seven clinicians. We added an open-text comment option. We did not identify any other issues that were important enough to participants to include. Response choices ranged from one (very bad) to four (very good), with a not applicable option (does not apply). Phase 3 involved 15 patients and 16 family members and demonstrated the acceptability of the consideRATE questions. Most reported that the questions were not distressing, disruptive, or confusing. Completion time averaged 2.4 minutes (range 1-5). CONCLUSION: Our brief patient-reported serious illness experience measure is based on what matters most to patients, families, and clinicians. It was acceptable to patients and families in a regional sample. It has promise for use in clinical settings.

A Person-Centered, Registry-Based Learning Health System for Palliative Care: A Path to Coproducing Better Outcomes, Experience, Value, and Science.

BACKGROUND: Palliative care offers an approach to the care of people with serious illness that focuses on quality of life and aligning care with individual and family goals, and values in the context of what is medically achievable. OBJECTIVE: Measurement of the impact of palliative care is critical for determining what works for which patients in what settings, to learn, improve care, and ensure access to high value care for people with serious illness. METHODS: A learning health system that includes patients and families partnering with clinicians and care teams, is directly linked to a registry to support networks for improvement and research, and offers an ideal framework for measuring what matters to a range of stakeholders interested in improving care for this population. MEASUREMENTS: Measurement focuses on the individual patient and family experience as the fundamental outcome of interest around which all care delivery is organized. RESULTS: We describe an approach to codesigning and implementing a palliative care registry that functions as a learning health system, by combining patient and family inputs and clinical data to support person-centered care, quality improvement, accountability, transparency, and scientific research. DISCUSSION: The potential for a palliative care learning health system that, by design, brings together enriched information environments to support coproduction of healthcare and facilitated peer networks to support patients and families, collaborative clinician networks to support palliative care program improvement, and collaboratories to support research and the application of research to benefit individual patients is immense.

Acceptability and Impact of a Required Palliative Care Rotation with Prerotation and Postrotation Observed Simulated Clinical Experience during Internal Medicine Residency Training on Primary Palliative Communication Skills.

BACKGROUND: Improving communication training for primary palliative care using a required palliative care rotation for internal medicine (IM) residents has not been assessed. OBJECTIVE: To assess skills acquisition and acceptability for IM residents not selecting an elective. DESIGN: A consecutive, single-arm cohort underwent preobjective structured clinical examination (OSCE) with learner-centric feedback, two weeks of clinical experience, and finally a post-OSCE to crystallize learner-centric take home points. SETTING/SUBJECTS: IM second year residents from Dartmouth-Hitchcock were exposed to a required experiential palliative care rotation. MEASUREMENTS: Pre- and post-OSCE using a standardized score card for behavioral skills, including patient-centered interviewing, discussing goals of care/code status, and responding to emotion, as well as a confidential mixed qualitative and quantitative evaluation of the experience. RESULTS: Twelve residents were included in the educational program (two were excluded because of shortened experiences) and showed statistically significant improvements in overall communication and more specifically in discussing code status and responding to emotions. General patient-centered interviewing skills were not significantly improved, but prerotation scores reflected pre-existing competency in this domain. Residents viewed the observed simulated clinical experience (OSCE) and required rotation as positive experiences, but wished for more opportunities to practice communication skills in real clinical encounters. CONCLUSIONS: A required palliative care experiential rotation flanked by OSCEs at our institution improved the acquisition of primary palliative care communication skills similarly to other nonclinical educational platforms, but may better meet the needs of the resident and faculty as well as address all required ACGME milestones.

Physician attitudes toward the use of fecal microbiota transplantation for the treatment of recurrent Clostridium difficile infection.

BACKGROUND: Fecal microbiota transplantation (FMT) is a safe and effective, yet infrequently used therapy for recurrent Clostridium difficile infection (CDI). OBJECTIVE: To characterize barriers to FMT adoption by surveying physicians about their experiences and attitudes toward the use of FMT. METHODS: An electronic survey was distributed to physicians to assess their experience with CDI and attitudes toward FMT. RESULTS: A total of 139 surveys were sent and 135 were completed, yielding a response rate of 97%. Twenty-five (20%) physicians had treated a patient with FMT, 10 (8%) offered to treat with FMT, nine (7%) referred a patient to receive FMT, and 83 (65%) had neither offered nor referred a patient for FMT. Physicians who had experience with FMT (performed, offered or referred) were more likely to be male, an infectious diseases specialist, >40 years of age, fellowship trained and practicing in an urban setting. The most common reasons for not offering or referring a patient for FMT were: not having 'the right clinical situation' (33%); the belief that patients would find it too unappealing (24%); and institutional or logistical barriers (23%). Only 8% of physicians predicted that the majority of patients would opt for FMT if given the option. Physicians predicted that patients would find all aspects of the FMT process more unappealing than they would as providers. CONCLUSIONS: Physicians have limited experience with FMT despite having treated patients with multiple recurrent CDIs. There is a clear discordance between physician beliefs about FMT and patient willingness to accept FMT as a treatment for recurrent CDI.

Effect of varying the number and location of alcohol-based hand rub dispensers on usage in a general inpatient medical unit.

We sequentially increased the number of wall-mounted alcohol-based hand rub dispensers in a small medical unit to evaluate effects on hand hygiene performance. Above a certain point, addition of more dispensers did not increase hand hygiene frequency, which appeared to be influenced more by location than by total number of dispensers.

Immune responses in infants whose mothers received Tdap vaccine during pregnancy.

BACKGROUND: The effect of maternal Tdap vaccination on infant immunologic responses to routine pediatric vaccines is unknown. METHODS: This was a cohort study of infants whose mothers received or did not receive Tdap vaccine during pregnancy. Maternal and cord blood samples were collected at delivery; infant blood samples were collected before and after primary series and booster dose of diphtheria, tetanus, and acellular pertussis (DTaP) and other vaccines. Geometric mean antibody concentrations or titers to pertussis, hepatitis B, tetanus, diphtheria, Haemophilus influenzae type b and polio antigens were measured. Mean maternal-to-cord blood antibody ratios were calculated. RESULTS: At delivery, maternal and cord antibody concentrations to pertussis antigens were higher in the Tdap group (n=16) than control group (n=54; maternal: 1.9- to 20.4-fold greater; cord: 2.7- to 35.5-fold greater). Increased antibody concentrations persisted for infants at first DTaP (3.2- to 22.8-fold greater). After primary series, antibody concentrations to pertussis antigens were lower in Tdap group (0.7- to 0.8-fold lower), except for fimbriae types 2 and 3 (FIM) (1.5-fold greater). Antibody concentrations to pertussis antigens before and after booster dose were comparable (prebooster: Tdap group 1.0- to 1.2-fold higher than controls; postbooster: 0.9- to 1.0-fold lower). Differences in FIM values at these time points are difficult to interpret, due to varying FIM content among DTaP vaccines administered to infants in both groups. CONCLUSIONS: Maternal Tdap immunization resulted in higher pertussis antibody concentrations during the period between birth and the first vaccine dose. Although slightly decreased immune responses following the primary series were seen compared with controls, differences did not persist following the booster.

Patient attitudes toward the use of fecal microbiota transplantation in the treatment of recurrent Clostridium difficile infection.

BACKGROUND: Fecal microbiota transplantation (FMT), a safe, effective alternative therapy for recurrent Clostridium difficile infection (CDI), is infrequently used, in part because of an assumption that patients are unwilling to consider FMT because of its unappealing nature. METHODS: Through a structured survey, including hypothetical case scenarios, we assessed patient perceptions of the aesthetics of FMT and their willingness to consider it as a treatment option, when presented with scenarios involving recurrent CDI. RESULTS: Four hundred surveys were distributed; 192 (48%) were returned complete. Seventy percent of respondents were female; 59% were >49 years of age. When provided efficacy data only, 162 respondents (85%) chose to receive FMT, and 29 (15%) chose antibiotics alone. When aware of the fecal nature of FMT, 16 respondents changed their choice from FMT to antibiotics alone, but there was no significant change in the total number choosing FMT (154 [81%]; P = .15). More respondents chose FMT if offered as a pill (90%; P = .002) or if their physician recommended it (94%; P < .001). Respondents rated all aspects of FMT at least "somewhat unappealing," selecting "the need to handle stool" and "receiving FMT by nasogastric tube" as most unappealing. Women rated all aspects of FMT more unappealing; older respondents rated all aspects less unappealing. Most respondents preferred to receive FMT in the hospital (48%) or physician's office (39%); 77% were willing to pay out-of-pocket for FMT. CONCLUSIONS: Patients recognize the inherently unappealing nature of FMT, but they are nonetheless open to considering it as a treatment alternative for recurrent CDI, especially when recommended by a physician.

Impact of a hospital-wide hand hygiene initiative on healthcare-associated infections: results of an interrupted time series.

BACKGROUND: Evidence that hand hygiene (HH) reduces healthcare-associated infections has been available for almost two centuries. Yet HH compliance among healthcare professionals continues to be low, and most efforts to improve it have failed. OBJECTIVE: To improve healthcare workers' HH, and reduce healthcare-associated infections. DESIGN: 3-year interrupted time series with multiple sequential interventions and 1-year post-intervention follow-up. SETTING: Teaching hospital in rural New Hampshire. INTERVENTIONS: In five categories: (1) leadership/accountability; (2) measurement/feedback; (3) hand sanitiser availability; (4) education/training; and (5) marketing/communication. MEASUREMENT: Monthly changes in observed HH compliance (%) and rates of healthcare-associated infection (including Staphylococcus aureus infections, Clostridium difficile infections and bloodstream infections) per 1000 inpatient days. The subset of S aureus infections attributable to the operating room served as a tracer condition. We used statistical process control charts to identify significant changes. RESULTS: HH compliance increased significantly from 41% to 87% (p<0.01) during the initiative, and improved further to 91% (p<0.01) the following year. Nurses achieved higher HH compliance (93%) than physicians (78%). There was a significant, sustained decline in the healthcare-associated infection rate from 4.8 to 3.3 (p<0.01) per 1000 inpatient days. The rate of S aureus infections attributable to the operating room rose, while the rate of other S aureus infections fell. CONCLUSIONS: Our initiative was associated with a large and significant hospital-wide improvement in HH which was sustained through the following year and a significant, sustained reduction in the incidence of healthcare-associated infection. The observed increased incidence of the tracer condition supports the assertion that HH improvement contributed to infection reduction. Persistent variation in HH performance among different groups requires further study.

Does tetanus-diphtheria-acellular pertussis vaccination interfere with serodiagnosis of pertussis infection?

An anti-pertussis toxin (PT) IgG enzyme-linked immunosorbent assay (ELISA) was analytically validated for the diagnosis of pertussis at a cutoff of 94 ELISA units (EU)/ml. Little was known about the performance of this ELISA in the diagnosis of adults recently vaccinated with tetanus-diphtheria-acellular pertussis (Tdap) vaccine, which contains PT. The goal of this study was to determine when the assay can be used following Tdap vaccination. A cohort of 102 asymptomatic health care personnel (HCP) vaccinated with Tdap (Adacel; Sanofi Pasteur) were aged 19 to 79 years (median, 47 years) at vaccination. For each HCP, specimens were available for evaluation at 2 to 10 time points (prevaccination to 24 months postvaccination), and geometric mean concentrations (GMC) for the cohort were calculated at each time point. Among 97 HCP who responded to vaccination, a mixed-model analysis with prediction and tolerance intervals was performed to estimate the time at which serodiagnosis can be used following vaccination. The GMCs were 8, 21, and 9 EU/ml at prevaccination and 4 and 12 months postvaccination, respectively. Eight (8%) of the 102 HCP reached antibody titers of ≥94 EU/ml during their peak response, but none had these titers by 6 months postvaccination. The calculated prediction and tolerance intervals were <94 EU/ml by 45 and 75 days postvaccination, respectively. Tdap vaccination 6 months prior to testing did not confound result interpretation. This seroassay remains a valuable diagnostic tool for adult pertussis.