Perfecting your patient journey and reaping the rewards
Ontology highlight
ABSTRACT:
SUBMITTER: Helmrichne Davila K
PROVIDER: S-EPMC8517949 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:In this study, we highlight patients’ experiences with metal hypersensitivity (MH) after receiving implantable medical devices (IMDs). We aim to identify gaps in clinical care and improve outcomes for individuals who have or may be sensitive to metals. Secondary data analysis from a previous interpretative phenomenological qualitative study was utilized. Using patient journey maps, we explored the experiences of 8 individuals from outpatient settings who received IMD and have first-hand experience with MH. We documented their journey from MH symptom recognition to diagnosis and subsequent IMD management. The results reveal that the time frames from device implantation to the treatment of MH varied from 17 to 228 months. The longest phase on the patient journey maps was the symptom recognition phase, which refers to the time between symptom emergence and MH diagnosis. Participants also required extensive healthcare utilization following their initial surgery. These findings emphasize that MH should be considered in differential diagnoses for patients with IMD. Early screening and detection of MH can enhance patient safety, alleviate distress, and reduce unnecessary healthcare utilization.
| S-EPMC10286172 | biostudies-literature
Project description:PURPOSE:To understand how different methodologies of qualitative research are able to capture patient experience of the hospital journey. METHODS:A qualitative study of orthopaedic patients admitted for hip and knee replacement surgery in a 250-bed university hospital was performed. Eight patients were shadowed from the time they entered the hospital to the time of transfer to rehabilitation. Four patients and sixteen professionals, including orthopaedists, head nurses, nurses and administrative staff, were interviewed. RESULTS:Through analysis of the data collected four main themes emerged: the information gap; the covering patient-professionals relationship; the effectiveness of family closeness; and the micro-integration of hospital services. The three different standpoints (patient shadowing, health professionals' interviews and patients' interviews) allowed different issues to be captured in the various phases of the journey. CONCLUSIONS:Hospitals can significantly improve the quality of the service provided by exploring and understanding the individual patient journey. When dealing with a key cross-functional business process, the time-space dynamics of the activities performed have to be considered. Further research in the academic field can explore practical, methodological and ethical challenges more deeply in capturing the whole patient journey experience by using multiple methods and integrated tools.
| S-EPMC6894823 | biostudies-literature
Project description:IntroductionThe diagnosis and management of atopic dermatitis (AD) is extensively addressed in detailed clinical guidelines. However, the high heterogeneity regarding presentation and progression and the increasingly broad therapeutic landscape suggest a complex real-world scenario, leading to multiple trajectories of AD patients.MethodsUsing a Delphi methodology for assessing the degree of consensus, we explored the views of a panel of dermatologists regarding the patients' trajectory through the diagnosis (block 1), treatment (block 2), and long-term management (block 3) of AD. Based on a systematic search of the literature, a scientific committee prepared a questionnaire of relevant items that were rated on a 10-point scale (from "totally agree" to "totally disagree") by a panel of dermatologists attending patients with AD in the hospital setting. Consensus was established based on predefined rules.ResultsThe final questionnaire included 58 items and was answered by 17 dermatologists. Overall, consensus was reached on 22 items (37.9%), each of which was a consensus for agreement. The consensus rates in blocks 1, 2, and 3 were 22.7%, 19.0%, and 86%, respectively.ConclusionsOur analysis revealed a remarkable lack of consensus on various aspects of the routine diagnosis and treatment of AD. These findings suggest the presence of unmet needs or limited implementation of guidelines for the management of AD and encourage further research to explore the causes of this low consensus on the management of AD in the real-world setting.
| S-EPMC8484426 | biostudies-literature
Project description:ObjectiveThis research describes the clinical pathway and characteristics of two cohorts of patients. The first cohort consists of patients with a confirmed diagnosis of lung cancer while the second consists of patients with a solitary pulmonary nodule (SPN) and no evidence of lung cancer. Linked data from an electronic medical record and the Louisiana Tumor Registry were used in this investigation.Materials and methodsREACHnet is one of 9 clinical research networks (CRNs) in PCORnet®, the National Patient-Centered Clinical Research Network and includes electronic health records for over 8 million patients from multiple partner health systems. Data from Ochsner Health System and Tulane Medical Center were linked to Louisiana Tumor Registry (LTR), a statewide population-based cancer registry, for analysis of patient's clinical pathways between July 2013 and 2017. Patient characteristics and health services utilization rates by cancer stage were reported as frequency distributions. The Kaplan-Meier product limit method was used to estimate the time from index date to diagnosis by stage in lung cancer cohort.ResultsA total of 30,559 potentially eligible patients were identified and 2929 (9.58%) had primary lung cancer. Of these, 1496 (51.1%) were documented in LTR and their clinical pathway to diagnosis was further studied. Time to diagnosis varied significantly by cancer stage. A total of 24,140 patients with an SPN were identified in REACHnet and 15,978 (66.6%) had documented follow up care for 1 year. 1612 (10%) had no evidence of any work up for their SPN. The remaining 14,366 had some evidence of follow up, primarily office visits and additional chest imaging.ConclusionIn both cohorts multiple biopsies were evident in the clinical pathway. Despite clinical workup, 70% of patients in the lung cancer cohort had stage III or IV disease. In the SPN cohort, only 66% were identified as receiving a diagnostic work-up.
| S-EPMC8045203 | biostudies-literature
Project description:IntroductionInsomnia affects daily functioning and overall health, and is thus associated with significant individual, societal, and economic burden. The experience of patients living with insomnia, their perception of the condition, and its impact on their quality of life is not well documented. The objective of this study was to map the patient journey in insomnia and identify unmet needs.MethodsParticipants were individuals with insomnia, and healthcare professionals (HCPs) who treat insomnia, in the United Kingdom, France, Germany, Italy, and Canada. Qualitative interviews (50 patients, 70 HCPs) and a quantitative survey (700 patients, 723 HCPs) were conducted to inform the patient-journey mapping and obtain information on the emotions, perceptions, and experiences of patients and HCPs.ResultsThe patient journey comprises seven phases. The first defines the onset of insomnia symptoms. Phase 2 represents self-initiated behavior change to improve sleep (e.g., sleep hygiene, reducing caffeine, exercise). The next phase is characterized by use of over-the-counter (OTC) treatments, which generally fail to provide lasting relief. Phase 4 describes the first HCP consultation (occurring several months to several years after onset) and typically occurs at a crisis point for the patient; patients may be looking for an immediate solution (e.g., medication), which may not align with their HCP's recommendation. The following stage comprises sleep hygiene/behavioral changes (±OTC treatment) under HCP guidance for many patients, although offering prescription treatments without a sleep hygiene stage under supervision is more common in some countries. Phase 6 describes prescription medication initiation, where patients fluctuate between relief/hopefulness and a sense of failure, while HCPs try to balance the need to provide relief for the patient while maintaining best medical practice and minimizing adverse effects. The final phase (living with long-term insomnia) represents an indefinite period during which sleep issues remain unresolved for many patients, with most of them continuing to use prescription treatments for longer than indicated and creating their own variable, self-managed regimens combining multiple modalities.ConclusionThis patient journey analysis for insomnia revealed seven distinct phases, highlighting different touchpoints where insomnia management could be optimized.
| S-EPMC10497771 | biostudies-literature
Project description:BackgroundPatient-reported data-satisfaction, preferences, outcomes and experience-are increasingly studied to provide excellent patient-centred care. In particular, healthcare professionals need to understand whether and how patient experience data can more pertinently inform the design of service delivery from a patient-centred perspective when compared with other indicators. This study aims to explore whether timely patient-reported data could capture relevant issues to improve the hospital patient journey.MethodsBetween January and February 2019, a longitudinal survey was conducted in the orthopaedics department of a 250-bed Italian university hospital with patients admitted for surgery; the aim was to analyse the patient journey from the first outpatient visit to discharge. The same patients completed a paper-and-pencil questionnaire, which was created to collect timely preference, experience and main outcomes data, and the hospital patient satisfaction questionnaire. The first was completed at the time of admission to the hospital and at the end of hospitalisation, and the second questionnaire was completed at the end of hospitalisation.ResultsA total of 254 patients completed the three questionnaires. The results show the specific value of patient-reported data. Greater or less negative satisfaction may not reveal pathology-related needs, but patient experience data can detect important areas of improvement along the hospital journey. As clinical conditions and the context of care change rapidly within a single hospital stay for surgery, collecting data at two different moments of the patient journey enables researchers to capture areas of potential improvement in the patient journey that are linked to the context, clinical conditions and emotions experienced by the patient.ConclusionBy contributing to the literature on how patient-reported data could be collected and used in hospital quality improvement, this study opens the debate about the use of real-time focused data. Further studies should explore how to use patient-reported data effectively (including what the patient reports are working well) and how to improve hospital processes by profiling patients' needs and defining the appropriate methodologies to capture the experiences of vulnerable patients. These topics may offer new frontiers of research to achieve a patient-centred healthcare system.
| S-EPMC8048032 | biostudies-literature
Project description:BackgroundLimited data are available on the experiences of patients with autoinflammatory diseases (AIDs) and their families along the path to diagnosis and treatment. We sought to describe these experiences in patients with AIDs including tumor necrosis factor receptor-associated periodic syndrome (TRAPS), mevalonate kinase deficiency/hyperimmunoglobulin D syndrome (MKD/HIDS), and familial Mediterranean fever (FMF).MethodsNinety-minute, semi-structured qualitative interviews and 5-day written/video diaries were used to gather information on the experiences of patients with AIDs and their families.ResultsTwelve families of patients from the US (TRAPS [n = 4], MKD/HIDS [n = 5], FMF [n = 5]) participated in this study from August to November 2015. The study included two families with multiple afflicted siblings. Patients' ages ranged from 1 to 28 years. Most parents reported realizing that something was seriously wrong with their child after medical emergencies and/or hospitalizations, which initiated the difficult path to diagnosis. For most, the process included multiple specialist visits, extensive and repeated testing, and many misdiagnoses. Over time, 92% of parents reported losing confidence in the healthcare system's ability to find an answer to their child's symptoms, while they also struggled with unsupportive school personnel and dismissive friends and relatives. Patients and their parents reported holding on to memories of "what life was like" before the onset of symptoms and mourning their subsequent loss of "normalcy." Even after diagnosis, patients and parents continued to feel uncertain about what to expect in the future.ConclusionsAll families emphasized the need for efficient early diagnosis of AIDs. Initiatives that improve the speed and accuracy of diagnosis, provide more comprehensive patient education, and support patients and families through the illness have the potential to significantly improve the quality of life of patients with AIDs and their families. Healthcare providers should be aware of the impact of the long diagnostic journey on families and work to create an environment of trust and collaboration in the face of a difficult and prolonged diagnostic process.
| S-EPMC6127942 | biostudies-literature
Project description:BackgroundThe promise of precision cancer medicine presently centers around the genomic sequence of a patient's tumor being translated into timely, actionable information to inform clinical care. The analysis of cell-free DNA from liquid biopsy, which contains circulating tumor DNA (ctDNA) in patients with cancer, has proven to be amenable to various settings in oncology. However, open questions surrounding the clinical validity and utility of plasma-based analyses have hindered widespread clinical adoption.Main bodyOwing to the rapid evolution of the field, studies supporting the use of ctDNA as a biomarker throughout a patient's journey with cancer have accumulated in the last few years, warranting a review of the latest status for clinicians who may employ ctDNA in their precision oncology programs. In this work, we take a step back from the intricate coverage of detection approaches described extensively elsewhere and cover basic concepts around the practical implementation of next generation sequencing (NGS)-guided liquid biopsy. We compare relevant targeted and untargeted approaches to plasma DNA analysis, describe the latest evidence for clinical validity and utility, and highlight the value of genome-wide ctDNA analysis, particularly as it relates to early detection strategies and discovery applications harnessing the non-coding genome.ConclusionsThe maturation of liquid biopsy for clinical application will require interdisciplinary efforts to address current challenges. However, patients and clinicians alike may greatly benefit in the future from its incorporation into routine oncology care.
| S-EPMC8935823 | biostudies-literature
Project description:The limb-girdle muscular dystrophies (LGMD) are a collection of genetic diseases united in their phenotypical expression of pelvic and shoulder area weakness and wasting. More than 30 subtypes have been identified, five dominant and 26 recessive. The increase in the characterization of new genotypes in the family of LGMDs further adds to the heterogeneity of the disease. Meanwhile, better understanding of the phenotype led to the reconsideration of the disease definition, which resulted in eight old subtypes to be no longer recognized officially as LGMD and five new diseases to be added to the LGMD family. The unique variabilities of LGMD stem from genetic mutations, which then lead to protein and ultimately muscle dysfunction. Herein, we review the LGMD pathway, starting with the genetic mutations that encode proteins involved in muscle maintenance and repair, and including the genotype-phenotype relationship of the disease, the epidemiology, disease progression, burden of illness, and emerging treatments.
| S-EPMC8190568 | biostudies-literature
Project description:BackgroundFabry disease (FD) is a rare X-linked lysosomal storage disease caused by a deficiency in α-galactosidase that is frequently diagnosed late after disease onset. While previous studies have focused on the multisystem manifestations that can lead to delayed or incorrect diagnosis and management, none have investigated the entire patient journey, and few have examined the patient's disease experience.ObjectiveTo investigate the path to diagnosis from disease onset, and the impact of the disease on daily life, among individuals with FD in Japan.MethodsA nationwide survey of patients with FD receiving enzyme replacement therapy (ERT) was conducted between March 27 and June 11, 2018. Participants were recruited via patient support groups or physicians. Respondents completed a questionnaire eliciting information on sociodemographic status, self-perceived health status, initial and current clinical manifestations, the process of diagnosis, and impact on their life. Responses were analyzed descriptively.ResultsData from 40 respondents were analyzed (17 males and 23 females; 77.5% aged ≥30 years). Mean ERT duration was 7.7 years. Mean time from disease onset to diagnosis was 18.7 years (16.7 years [males] vs 20.3 years [females]). The final diagnosis was made most commonly by pediatricians (38%). Forty percent of respondents felt relieved and 30% felt anxious when diagnosed, and when initiating ERT, 48% felt more positive about their daily life. Nevertheless, 85% reported that treatment affected their lives/work, and most (73%) experienced difficulties in their relationships with others.ConclusionEfforts are needed to achieve early diagnosis of patients with FD in Japan, to improve clinician awareness, and improve the psychosocial issues associated with FD.
| S-EPMC9411675 | biostudies-literature