Patient Experience Journal (PXJ, The Beryl Institute)
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Effectiveness of the communication model, C.O.N.N.E.C.T., on patient experience and employee engagement: A prospective study
Get PDFNorthwell Health is a large integrated healthcare organization comprised of 66,000+ employees, 23 hospitals and over 650 medical practice locations located geographically across New York State. In an effort to align and structure interactions between patients, families and healthcare professionals, Northwell Health created a communication model, C.O.N.N.E.C.T. This unique, humanistic model is an acronym that stands for: Contact, Opening Greeting, Name/Title, Needs, Explanation, Closing and Thank. This prospective 3-part study explores the impact of the C.O.N.N.E.C.T. model on professional education, engagement and patient experience. A holistic approach was utilized including a pre and post e-learning module assessment, direct observation behavioral competency process and patient experience surveys. Study participants were Patient Access Services/Registrar professionals across three Northwell Health Emergency Departments. The educational intervention produced statistically significant outcomes in overall learned knowledge, applied knowledge utilizing direct behavioral competency and patient experience. There were variations per hospital for patient experience outcomes. Healthcare necessitates an interdisciplinary team-approach and thus, non-clinical professionals also require educational interventions focused on effective patient and family centered communication. Every role, every person and every moment matters
The gift of pain with transformative possibilities
Get PDFThis personal narrative explores the experiences of pain metaphorically as a gift. The intention of this article is to offer alternative ways to reflect on pain, life and taking risks to move from health literacy toward health agency with help. I describe my approach to decision making using the hermeneutic wager which provides a means to imagine possibilities while mindfully assessing risk. Learning to manage pain and learning to live well with pain is a gift that we are not always aware is within our grasp
Life with my baby in a neonatal intensive care unit: Embracing the Family Integrated Care model
Get PDFThis paper is a personal narrative that describes the components of the Family Integrated Care Model in a neonatal intensive care unit in Canada. I begin by introducing the reader with a brief story of how my son came to be admitted into a NICU. Next, I discuss three aspects of the Family Integrated Care Model that I found to be most striking: medical rounds, “do-ups” and skin-to-skin contact. I also discuss how my immersion in this healthcare setting for three months was a form of autoethnographic fieldwork, as I experienced the NICU both as a parent and a health researcher. Finally, I outline two recommendations to the Family Integrated Care model that might prove to be useful for healthcare professionals in other NICUs to adopt
Lessons for patient experience from the voices of pediatrics and children’s hospitals
Get PDFThis special issue on patient & family experience in children’s hospitals and pediatric care underlines pediatrics’ position as a leader in the experience journey. In pediatrics and children’s hospitals significant efforts are made to the ensure the environment is welcoming and comfortable, there is a commitment to communicating to patients – the children that are cared for – in a way they can understand, and there is a clear intention of engaging family members as an integral part of the care experience. In acknowledging that this is a special issue on pediatrics, we would miss a significant opportunity if we were not to look for and find the lessons that can be applied across healthcare settings. It is this capacity to transcend boundaries in which true experience improvement will be realized
The pediatric emergency department care experience: A quality measure
Get PDFTo develop and validate a measure of the quality of the pediatric emergency department care experience from the parent perspective. This was a multiphase study conducted at a tertiary-care pediatric health system using qualitative and quantitative methods. A list of candidate questions was developed to measure each of eight dimensions of family-centered pediatric emergency care described in a published framework. This list was evaluated and refined using the Question Appraisal System (QAS-99) followed by cognitive interviewing methods. Remaining questions were field tested using survey methods via telephone interviews with randomly selected parents. Composite scores to measure each of the eight dimensions of family-centered pediatric emergency care were calculated. Reliability was evaluated using measures of internal consistency. Construct validity was evaluated by measuring the association of each question and composite scores with overall satisfaction. A pool of 77 questions was reduced to 51 using QAS-99 criteria. Cognitive interviews with 19 parents resulted in a final list of 24 questions for field testing. With a response rate of 46%, 404 parents participated in the field test. Each individual question exhibited a significant positive association with overall satisfaction. Measures of internal consistency did not support the composite scores based on the initial eight dimensions. An exploratory factor analysis resulted in alternative composite measures that exhibited acceptable reliability and construct validity. This study has resulted in a measure that can be used to inform quality improvement work aimed at improving the pediatric emergency department care experience
Racial/ethnic and geographic differences in access to a usual source of care that follows the patient-centered medical home model: Analyses from the Medical Expenditure Panel Survey data
Get PDFThis study examined racial and geographic differences in access to a usual source of care (USC) and it further explored these differences among individuals who had a USC that followed the patient-centered medical home (PCMH) model. Using cross-sectional data from the Household Component of the Medical Expenditure Panel Survey (2008-2013), our sample consisted of non-institutionalized US civilians ages 18-85 (n= 146,233; weighted n = 229,487,016). Our analysis included weighted descriptive statistics and weighted logistic regressions. Although 76% of the respondents had a USC, only 11% of them had a USC that followed the PCMH model. Among respondents who had a USC that followed the PCMH model, 80% were White, 13% Black, 5% Asian, and 12% were of Hispanic ethnicity. Across U.S. regions, 88% percent of those who had a USC that followed the PCMH model resided in metropolitan statistical areas (MSAs), 22% resided in the West, 26% in the Northeast, 25% in the Midwest, and 27% in the South. Results from logistic regression analyses indicated that race and ethnicity were not significant predictors of having a USC that followed the PCMH model. Northeastern U.S. residents (OR: 1.30; 95% CI:1.06-1.61) were more likely to have a USC that followed the PCMH model compared with southern residents. In conclusion, only a small percentage of respondents in our sample had a USC with the PCMH model. Further, race and ethnicity were not predictors of having a USC with the PCMH model
Patients educating health care providers on Lynch syndrome
Get PDFObjective: Lynch syndrome (LS) patients are at an elevated risk for early-onset cancers, including endometrial and colorectal (CRC). Prior research has shown a deficit in provider knowledge of LS, which may affect patient satisfaction and adherence to recommended screening and surveillance regimens. Studies suggest patients with LS may educate providers perceived as lacking LS knowledge; however, little is known about these interactions. The goal of this study is to assess patient-reported outcomes from clinical interactions where LS patients educate their providers.
Methods: Participants (n=55) were asked to complete an in-depth telephone interview.
Results: Out of 55 participants, approximately two-thirds (n=37) reported engaging in educational interactions. Participants reported feeling satisfied with the provider response in over half of the reported educational interactions (n=24). Participants reported changes in their patient-provider relationship ranging from improvements in their relationship to termination of services. Conclusion: Patients with LS report educating providers on their diagnosis as well as their screening and surveillance requirements. Patient-reported outcomes of these educational interactions vary based on the provider’s response to the interaction. Providers should be open and receptive to these educational interactions and follow-up on the discussion to improve patient satisfaction
Perceptions of patient-centered care among veterans with gastroesophageal reflux disease on proton pump inhibitor therapy
Get PDFThe aim of this study was to explore perceptions of patient-centered care (PCC) among Veterans with gastroesophageal reflux disease (GERD) on proton pump inhibitor (PPI) therapy using patient-reported outcome (PRO) measures. We used three validated surveys to measure PCC concepts in a national sample of Veterans with GERD on PPI therapy. The Combined Outcome Measure for Risk Communication and Treatment Decision Making Effectiveness (COMRADE) measures patient experiences with risk communication and decision-making. The Patient Activation Measure (PAM) evaluates confidence and knowledge needed for self-management. The Patient Assessment of Care for Chronic Conditions (PACIC) assesses views of chronic care received. We used descriptive statistics to describe patient characteristics and PCC outcomes. Respondents (n=444) were mostly male (95.1%) with a mean age of 67.7 years. The mean COMRADE score measuring patient experiences with risk communication was 55.3 (SD=19.0). The mean PAM score was 56.1 (SD=19.2); 47.8% of respondents were considered disengaged patients lacking confidence and knowledge for self-management. The mean PACIC summary score was 3.03 (SD=1.2), with highest scores in the Delivery System Design/Decision Support (3.38, SD=1.2) subscale, and lowest scores in the Follow-up/Coordination subscale (2.58, SD=1.3). Veterans with GERD reported that care was well-organized and supportive in enhancing decision-making. Potential gaps in patient experiences may exist in delivering follow-up care, enhancing patient activation, and informing patients about risks of available GERD treatments. This is the first study to evaluate patient perceptions of PCC in a national sample of Veterans with GERD on PPI therapy. Findings can inform further investigation and development of targeted interventions to enhance the experience of PCC for individuals with GERD
Tertiary care centres must do more for patients with unknown conditions: Lessons learned from a child
Get PDFPostural Orthostatic Tachycardia Syndrome (POTS) is a debilitating disease with a commonly non-uniform and unspecific presentation that makes diagnosis difficult. A twelve-year-old girl, recently diagnosed with Addison’s Disease, was referred to paediatric nephrology for Fludrocortisone-induced nocturnal hypertension. She had fallen off the growth curve for both height and weight from the 50th percentile at birth to below the 5th percentile at presentation. The severity and multitude of her symptoms, including muscle weakness, poor body control, dizziness, light headedness, persistent fatigue, excessive sweating, tachycardia, chronic constipation and recurrent infection hinted at the unusual nature of this case of Addison’s. At the time of referral, she had been seen by more than a dozen specialists and subspecialists as well as undergone a number of tests including neurophysiological testing without sufficient explanation. With the help of tilt-table testing, we established the diagnosis of POTS. There is a lack of tested treatment options for POTS, and we established dosing of pyridostigmine in children, based on the emerging literature in adults. While pyridostigmine therapy substantially improved her quality of life, it took another 6 years and referral outside the country, before a final unifying diagnosis was made. Eventually, the patient was diagnosed with Ehlers Danlos Syndrome with associated autonomic dysfunction, including POTS, as well as primary adrenal insufficiency. The parents and the patient experienced considerable stress due to the lack of willingness of many physicians that the family encountered to search for a diagnosis and a treatment
Can an interactive application be used to collect meaningful feedback from paediatric patients and their parents in a hospital setting?
Get PDFThe objective of this study was to determine the acceptability of using an interactive application (Fabio the Frog) to understand the experiences and perspectives of children and parents/carers regarding their health care encounter for the purpose of quality improvement and consumer feedback. Children’s perspectives of their healthcare were collected via the interactive application through the use of a validated survey, the Children’s Perceptions of Healthcare Survey (CPHS). The acceptability of eliciting views from children and parents via an interactive application platform was collected using an additional survey designed for this purpose. Data were collected in two phases. Overall, healthcare experiences were found to be positive across key areas including communication, care delivery, hospital environment, and interaction with staff. The application was identified as easy and fun to use from the perspective of children (n=96) and parents/carers (n=79). Parents/carers also responded positively to the ease and enjoyment they observed when their child was using this tool. Staff appreciated that eliciting children’s responses to their care helps to inform high quality care. The interactive application - Fabio the Frog - was a successful strategy for understanding children’s experience across a range of ages, abilities and medical conditions. The study demonstrated the acceptability of an application as an engaging and valuable means to collect meaningful feedback from children and their families. Nevertheless, limitations were noted in the practicality of providing an application to patients in a busy clinical environment. Additionally, the authors recognise that a greater challenge lies in finding ways to incorporate feedback into improving the patient experienc