Journal of Patient Experience

The purpose of this mixed methods, cross-sectional patient survey was to characterize patient experience, to explore the frequency of and reasons for infertility treatment discontinuation and return to infertility treatments. Participants were recruited from United States patient support groups. Participants had received or were receiving ovulation induction (OI) with or without intrauterine insemination (IUI), with or without subsequent in vitro fertilization (IVF), or IVF with no other previous infertility treatment...

Patient choice in healthcare follows a process in which references to evidence and experience are intertwined. From the perspective of a patient with chronic kidney disease, I propose experiential fallibilism as the use of uncertain evidence and experience, along with knowledge gained in new contexts, situations, and experiences, to attain truth and promote shared decision-making. Thus, because of their uncertain nature, both the patient's experience and the doctor's focus on evidence should be integrated into a decision-making process through a co-learning perspective so that they can mutually enrich each other and prevent inappropriate actions and decisions in other clinical contexts...

Health care providers need to support families and provide resources when facing their child's death and potential organ donation. Aims of this retrospective chart review in a tertiary health care system were: (1) describe characteristics of pediatric organ donors compared to those who were not; (2) determine differences between services utilized by families who selected organ donation versus those who did not. From 2017 to 2023 of 288 pediatric deaths, 76 were organ donors and 212 did not donate. Organ donors' mean age at admission was 6...

Patient experience is globally recognized as an important indicator of health system performance, linked to health system quality and improving patient outcomes. Post COVID-19, health systems have embraced digital health and advanced digital transformation efforts; however, the relationship between digital health and patient experience outcomes is not well-documented. Using HCAHPS hospital survey data to measure patient experience, and HIMSS EMRAM Maturity Model data to measure digital maturity, a cross-sectional design using multivariate analyses examined the impact of digital maturity on patient experience in US hospitals...

Long coronavirus disease 2019 (COVID-19) is poorly understood, widespread and debilitating. Integrative medical group visits (IMGVs) provide group medical care virtually or in person and are reimbursed by insurance payors. IMGV introduces integrative modalities such as mindfulness, nutrition, and acupressure in a person-centered, supportive, and educational environment. To evaluate a telehealth IMGV program called Nourish to Flourish (N2F) for patients with long COVID, three researchers conducted a qualitative analysis of pre- and post-group individual interviews...

Recognizing the paucity of literature describing the non-medical effects of care at a tertiary parental fetal care center upon families, the purpose of the study was to better examine the potential barriers that our patients face related to care in a parental fetal care center. An anonymous survey was sent via email to patients who received care from 2015 to 2021. The survey included questions regarding demographics, fetal diagnoses, non-medical expenses related to care, and the impact of care on patient relationships, employment, and other children...

To prepare healthcare organizations and patients/families to be equally ready to become partners in co-designing healthcare policy, practices, and improvements, there is a need to (1) understand how "co-design ready" organizations and their staff and care providers are to co-design health care policies, practices, and improvements with patients and families; (2) understand how prepared patients and families, as users of the health system, are to step into co-designer roles with confidence so that their voices will be heard as they influence the development or changes to improve healthcare system policies, services, practices, and products; (3) anticipate and/or address challenges with meeting the expectations of what is involved with the co-design approach, including with recruiting, preparing, and training care setting leaders, staff/care providers, and patient/family advisors; (4) ensure care settings provided appropriate tools and resources to support co-design; and (5) guide the shift in culture from engagement to co-design...

This study aimed to synthesize all qualitative evidence on the experiences of hematopoietic stem cell transplant (HSCT) patients attending long-term monitoring clinics from their perspective. A systematic search of the literature was undertaken across 8 databases. The Critical Appraisal Skills Program was used to evaluate each study's quality. Confidence in the Evidence from Reviews of Qualitative Research was employed to assess confidence in each finding. Three themes from 4 qualitative studies were identified relating to patients' experiences, "[It's] important to maintain a good relationship with the nurses and doctors," "There's always the thing about the logistics," and "Once you have cancer, you're always thinking do I have it again?"...

Cognitive dysfunction (CD) is a common, impairing symptom experienced by persons with fibromyalgia (FM). This study explored how individuals with FM describe their experience of CD in an online peer support environment. Posts referencing cognitive symptoms were extracted from two Facebook FM peer support groups at two timepoints. Using inductive Thematic Analysis, key discussion themes were identified and compared across groups and time. Four themes represented the way members described their cognitive experiences in FM: understanding and describing CD experiences, distrust of cognitive abilities, choosing between pain and medication side effects, and misunderstanding and judgement from others...

Research surrounding tumor boards has focused on patient outcomes and care coordination. Little is known about the patient experience with tumor boards. This survey examined aspects of the patient experience for patients presented at our multidisciplinary endocrine tumor board (ETB). A 15-item survey was distributed via the online patient portal to patients over the age of 18 whose case had been discussed at our ETB over an 18-month period. Descriptive statistics were reported, and a Fisher's exact test was used to examine relationships between variables...

Patient-physician communication has the potential to improve outcomes and satisfaction through the shared decision-making process (SDM). This study aims to assess the relationship between perception of SDM and demographic, clinical, and patient-reported outcomes in patients undergoing Hallux Valgus (HV) correction. A prospective analysis of 306 patients scheduled for HV surgery was completed. The CollaboRATE score was used to measure SDM. Multivariable linear regression model was used to assess whether SDM scores were associated with preoperative characteristics or postoperative outcome scores...

The purpose of this study is to provide an overview of patients' experiences using a precision medicine (PM) clinic that conducts pharmacogenomics-based (PGx) testing for adverse drug reactions. The study aimed to identify the features of the clinic valued most by patients and areas for improvement. A paper survey was used to collect data. Survey questions focused on patients' perceptions of the PM testing and the overall clinic experience. Sixty-seven patients completed the survey. Quantitative data were analyzed using SPSS and frequencies were reported...

Meaningful engagement of people living with health conditions means actively incorporating them in all stages of health decision-making. Despite efforts by global health agencies and governments towards meaningful engagement of people living with noncommunicable diseases (PLWNCDs), many opportunities for participation are tokenistic. PLWNCDs often report feeling excluded from technical discussions and outnumbered by other stakeholders. Participation in decision-making is a human right, and PLWNCDs must continue advocating for a "nothing about us without us" approach...

By listening to the "voice" of patients, Northwell Health, New York's largest healthcare organization, took an evidence-based approach to empowering physicians and advanced care providers. The Relationship Centered Communication course utilizes experiential learning to strengthen patient-centered communication and empathy skills to elicit provider-patient relationships grounded in partnership. This case study highlights (1) The pragmatic cultural journey requiring visionary leadership, strong collaborations, and an evolving educational strategy...

In response to the rise in mental disorders, psychosocial and community approaches have been proposed, complementing traditional clinical services. The present research aimed to understand the perception of individuals attending community-based strategies regarding mental health services as part of the approach to mental disorders in Colombia. Two workshops were conducted with 30 individuals with mental disorders (depression, anxiety and bipolar disorder), who were members of community strategies. A thematic analysis was conducted...

Telehealth provides greater opportunity for specialty access but lacks components of the physical exam. Point-of-care ultrasound (POCUS) may assist telehealth as a visual substitute for the provision of palpation. We conducted a prospective observational pilot project to survey oncologists about (1) their expectations of POCUS, (2) their use of POCUS in oncology telehealth visits, and (3) post-project assessment of their experiences. The results of the pre-assessment survey showed an interest among the oncologists in the ability to evaluate structures remotely via POCUS...

Study advisory committees (SACs) provide critical value to clinical trials by providing unique perspectives that pull from personal and professional experiences related to the trial's healthcare topic. The Emergency Medicine Palliative Care Access (EMPallA) study had the privilege of convening a 16-person SAC from the project's inception to completion. The study team wanted to understand the impact this project had on the SAC members. In this narrative, we use reflective dialogue to share SAC members' lived experiences and the impact the EMPallA study has had on members both personally and professionally...

Pediatric patients and their caregivers often experience perioperative anxiety. Interventions reduce caregiver anxiety improve cooperation and contribute to an improved patient experience. This study seeks to evaluate the efficacy of virtual reality (VR)-assisted mindfulness on perioperative caregiver anxiety. Participants were randomized into a standard of care (SOC) group, which included snacks but no technology-based distractions, or a VR group, which included snacks and a VR-guided meditation. Caregiver anxiety was measured before and after the intervention using the Visual Analogue Scale for Anxiety (VAS-A)...

We surveyed patients who had a received care for a gastrointestinal cancer between 03/2020 and 05/2021 to understand their perceptions of the impact of the Covid pandemic on cancer care delivery and quality of care. Three-hundred fifty-eight respondents provided evaluable responses (response rate: 17.3%). Approximately half of respondents (46.4%) perceived that they had experienced a pandemic-related cancer care modification; most changes were initiated by a clinician or the cancer center (44.6%). Relative to White patients those from Racialized Groups (OR: 1...

Little research has been conducted on the experience of pancreatic cancer from a patient's perspective. Several factors suggest that trajectory models of chronic illness or other cancers cannot be applied to pancreatic cancer. Within this grounded theory study, 26 problem-centred interviews were conducted with people with pancreatic cancer from Germany. A cancer-specific trajectory model was developed, depicting both curative and palliative courses. Two successive phases form the core: Immediately after diagnosis, there is an acute phase in which patients focus on mere survival, attempt to overcome the short-term consequences of pancreatic cancer and search for information...