Browsing by Author "Neiman, Joseph"
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Item Open Access Comparing Self-Management Programs with and without Peer Support among Patients with Chronic Obstructive Pulmonary Disease: A Clinical Trial.(Annals of the American Thoracic Society, 2022-10) Aboumatar, Hanan; Garcia Morales, Emmanuel E; Jager, Leah R; Naqibuddin, Mohammad; Kim, Samuel; Saunders, Jamia; Bone, Lee; Linnell, John; McBurney, Marjorie; Neiman, Joseph; Riley, Margaret; Robinson, Nancy; Rand, Cynthia; Wise, RobertRationale: Self-management support (SMS) is an essential component of care for patients who have chronic obstructive pulmonary disease (COPD), but there is little evidence on how to provide SMS most effectively to these patients. Peer support (i.e., support provided by a person with a similar medical condition) has been successfully used to promote self-management among patients with various chronic conditions, yet no randomized studies have focused on testing its effects for patients with COPD. Objectives: To assess whether adding peer support to healthcare professional (HCP) support to help patients with COPD self-management results in better health-related quality of life (HRQoL) and less acute care use. Methods: A two-arm randomized controlled trial was performed at one academic and one community hospital and their affiliate clinics. The study population included patients aged ⩾40 years who had been diagnosed with COPD by a physician and were currently receiving daily treatment for it. Two self-management support strategies were compared over 6 months. One strategy relied on the HCP for COPD self-management (HCP support); the other used a dual approach involving both HCPs and peer supporters (HCP Plus Peer). The primary outcome was change in HRQoL measured by the St. George's Respiratory Questionnaire at 6 months (range, 0-100, lower is better; four-point meaningful difference). Secondary outcomes included COPD-related and all-cause hospitalizations and emergency department visits. Analysis was conducted under intention to treat. Results: The number of enrolled participants was 292. Mean age was 67.7 (standard deviation, 9.4) years; 70.9% of participants were White, and 61.3% were female. St. George's Respiratory Questionnaire scores were not significantly different between the study arms at 6 months. HCP Plus Peer arm participants had fewer COPD-related acute care events at 3 months (incidence rate ratio, 0.68; 95% confidence interval [CI], 0.50-0.93) and 6 months (incidence rate ratio, 0.84; 95% CI, 0.71-0.99). Conclusions: Adding peer support to HCP support to help patients self-manage COPD did not further improve HRQoL in this study. However, it did result in fewer COPD-related acute care events during the 6-month intervention period. Clinical trial registered with www.clinicaltrials.gov (NCT02891200).Item Open Access Improving Inpatient Respite Care: A Collaboration with ALS Patients and Caregivers(Journal of Pain and Symptom Management, 2024-05) Sokolowski, Elizabeth; Babu, Meera; Hirshberg, Eliotte L Ellie; Howard, Leigh; Bynum, David Z; Turner, Robin; Fisher, David; Neiman, JosephItem Open Access Improving Patient and Family Communication in the Care of Patients Undergoing Mechanical VentilationNeiman, Joseph; Chaudhry, Hina; Edmunds, Lavinia; Maheshwari, Ayonija; Young, Samantha; Winters, Bradford; Berenholtz, SeanIntroduction: Approximately 800,000 hospitalized patients are mechanically ventilated each year in the United States, and as the population ages, the incidence of mechanical ventilation (MV) is increasing at a high rate. Patients often describe their experience with mechanical ventilation and the inability to communicate their needs and sensations to their families and providers as the most frightening and frustrating aspect of their care. The mechanically ventilated patient represents a crucial and growing subset of critically ill patients where improvements in patient and family communication are desperately needed. Objectives: Interview former MV patients and family members while engaging a patient and family council to develop a “patient and family-centered ventilator toolkit” to improve communication and to empower families to take an active role in the care of mechanically ventilated patients. Identify: 1) current knowledge and key experiences of mechanical ventilation, and 2) individual-centered approaches to communication. Materials and Methods: Focus groups were conducted with 26 former mechanical ventilation patients and family members using a facilitation guide developed by our multidisciplinary team including former patients and family caregivers. The focus groups were recorded, transcribed, and analyzed using a combination of a priori and inductive thematic codes in NVivo 12, a qualitative data analysis software package. A council of patient and family partners was engaged to develop a communication toolkit. Conclusions: Participants universally stated that mechanical ventilation is frightening, isolating, and in many cases, exceedingly traumatic. They described their challenges and frustrations communicating, as well as communication strategies they improvised. Their strategies were assembled into the toolkit. All participants felt there was an unmet need for communication resources for mechanically ventilated patients and family members. Next Steps: The toolkit is being provided to mechanically ventilated patients and families in an ICU at the Johns Hopkins Hospital. Preliminary survey results suggest patients using the toolkit have greater ease and satisfaction communicating with their care team and loved ones. Surveying and toolkit review are ongoing. Acknowledgements: This work was funded through an Agency for Healthcare Research and Quality award, K18 HS024200.Item Open Access Methodology and baseline characteristics of a randomized controlled trial testing a health care professional and peer-support program for patients with chronic obstructive pulmonary disease: The BREATHE2 study.(Contemporary clinical trials, 2020-07) Aboumatar, Hanan; Naqibuddin, Mohammad; Neiman, Joseph; Saunders, Jamia; Kim, Samuel; Chaudhry, Hina; Garcia-Morales, Emmanuel; Robinson, Nancy; McBurney, Marjorie; Jager, Leah; Ajayi, Tokunbo; Bone, Lee; Chung, Suna; Farrell, Bernard; Joo Jin, Hui; Linnell, John; Pirfo, Marlene; Rand, Cynthia; Riley, Peggy; Salvaterra, Carmen; Shea, Kai; Singh, Jorawar; Wise, RobertBackground
Self-management support (SMS) for patients with COPD can improve health-related quality of life (HRQOL). However, it remains unclear what SMS strategies are most effective. Using peer support to advance self-management is promising, as peer supporters possess credibility and can serve as role models.Methods
We conducted a single-blinded RCT comparing the effectiveness of two strategies to support patients with COPD. The strategies were 'Health Care Professional (HCP)' and 'HCP Plus Peer' support. Peer support was provided by patients with COPD who have stopped smoking, completed an acute pulmonary rehabilitation program, and met the requirements for becoming a peer supporter. We enrolled patients receiving treatment at inpatient and outpatient settings. Patients were encouraged to invite one family-caregiver to enroll with them. The primary outcome measure was the change in HRQOL at 6 months post enrollment. Secondary outcomes included COPD-related and all-cause hospitalizations and ED visits. Caregiver outcomes included preparedness for caregiving, caregiver stress, and coping.Results
A total of 292 patients as well as 50 family-caregivers were enrolled. The average patient age was 67.3 yrs. (SD 9.4), 61% were female and 26% were African-Americans. The majority of caregivers were females (68%) and were a spouse/partner (58%).Discussion
This study tested a dual strategy for providing support to patients with COPD that incorporates peer and health care professional support. The study had minimal exclusion criteria. If shown effective, the study offers a program of peer support that can be readily implemented in health care settings.Item Open Access Patient and Family Partnerships in the ICU: History, Benefits, and Strategies for the Future(ICU Management & Practice, 2024-04-19) Neiman, Joseph; Arizmendez, Natalia; Abraham, Marie; Dokken, Deborah; Johnson, Beverley; Hirshberg, EliotteThe seamless integration of patient- and family-centred care in the critical care setting remains elusive. This review discusses the history and benefits of patient- and family-centred care, plus strategies for partnering with patients and families in the critical care setting.Item Open Access What do mechanically ventilated patients want? A sense of normalcy and partnership.Neiman, Joseph; Chaudhry, Hina; Maheshwari, Ayonija; Winters, Bradford; Leslie, Myles; Berenholtz, Sean1) Background: Research was carried out at the Johns Hopkins Hospital. Mechanically ventilated patients in the ICU and their family members are the target population. 2) Problem: Mechanical ventilation (MV), although life saving, is associated with significant morbidity and mortality. Approximately 35% of patients receiving prolonged MV die in the hospital, and only 31% are discharged home. Of those who are discharged, almost half suffer from persistent debilitating complications including significant physical, cognitive, and psychological disability. Prevalence of psychiatric morbidity including depression, anxiety, and PTSD, and an inability to rejoin the workforce remain unacceptably high with rates as high as 50% at 1 year after discharge. This severe disability and trauma experienced in ICU survivors needs urgent attention, and improving patient care and reducing complications for MV patients is a global priority. While there has been a significant investment of resources to reduce complications from MV, few studies have directly engaged patients and families in this common goal. Our study sought to better understand the experiences of patients and families to help design future interventions to empower them to better understand, participate in their own care, and reduce complications from MV. 3A) Assessment of problem and analysis of its causes: Our study seeks to better understand the experiences of mechanically ventilated patients and their families to design interventions would humanize the ICU environment while maintaining normalcy and restoring dignity for patients and families. Between May 9, 2016 - April 18, 2017, semi-structured interviews were conducted with 25 former MV patients and their family members. Using purposive convenience sampling, potential patient and family partners were identified, screened, and recruited. Pertinent domains discussed in interviews included 1) knowledge of key ICU experiences related to mechanical ventilation, 2) complications and care issues associated with MV, 3) perceptions of commonly recommended strategies to reduced MV complications, 4) effective strategies to communicate this content, and 5) strategies to engage family members in care delivery. Interviews were digitally recorded and transcribed. 4) Intervention: Based on participant feedback, we are developing a multifaceted toolkit to improve the experience and participation of MV patients and their families. The toolkit includes empowering quotes from participants; strategies for maintaining a sense of normality from daily life outside the ICU; a section on incorporating day-to-day activities into routine in the ICU, which participants said gave them a sense of purpose; goal setting strategies; tips for interacting with the ICU staff; and descriptions of common MV and ICU features, e.g., mechanical ventilation, tracheostomy, staff roles, and machine sounds. 5) Strategy for change The proposed toolkit will have two overarching components. The principal is a resource to empower patient and family communication, engagement and wellness. The second section is a guide for staff to enable patients and families to use their portion of the kit. 6) Measurement of improvement: The study design is rooted in phenomenological, theoretical qualitative research. We used a combination of inductive and deductive processes to identify thematic codes. Tentatively, the pilot intervention impact will be measured using tailored MV patient and family satisfaction surveys. 7) Effects of changes: 8) Lessons learnt and 9) Messages for others: Patients and their families consistently and uniformly described MV as a frightening, and isolating experience, and welcomed interventions that would 1) improve their understanding of mechanical ventilation and its complications, and 2) encourage direct patient or family participation to reduce MV complications and create a lasting partnership with their healthcare team. 10) Please describe how you have involved patients, carers or family members in the project: A multidisciplinary team inclusive of MV patients and family caregivers developed the interview facilitator guide. In-depth interviews and focus groups were conducted with 25 former patients and their family members. The toolkit is based on feedback from patients and families, and a Patient and Family Council provided input on the toolkit as it was developed. 11) Please declare any conflicts of interest below. The study is funded by the Agency for Healthcare Research and Quality. We have no conflicts of interest. 12) Ethics Approval: The IRB at Johns Hopkins approved the study.