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This study aimed to depict the emotional journey of Japanese patients with specific intractable diseases facing challenges associated with a delayed diagnosis. Specifically, our focus was on elucidating the emotional journey of patients and identifying the unmet needs caused by a delayed diagnosis. We conducted a web-based survey targeting 179 patients with 11 specified intractable diseases. They reported their emotional states during each journey phase using a 10-point scale. The results revealed that the period from noticing bodily changes to clinic visits was characterized by the most negative emotional states. Furthermore, the patients experienced a gradual shift towards positive emotional states as they decided to complete a consultation at a specialized hospital. They reached their most positive emotional states when they received a definitive diagnosis, subsequent treatment, and care. The thematic classification of emotional changes at the time of definitive diagnosis showed that "relief" was the most prevalent emotion (41.9%), followed by "no change" (19.9%), "anxiety" (14.0%), "shock" (13.4%), and "resignation" (6.5%). Additionally, when classifying the thematic changes in emotions during the period of bodily changes and clinic visits, "frustration" was the most common (51.3%), followed by "fear and anxiety" (43.6%). Patients tended to be most psychologically distressed during the period leading up to the definitive diagnosis. These results reveal that patients with intractable diseases are seeking a fast and accurate diagnosis, and that achieving these is a key unmet need for the patients.
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INTRODUCTION: Eosinophilic esophagitis (EoE) is a chronic and progressive disease associated with dysphagia and eosinophilic infiltration of the esophageal mucosa. EoE can have a negative impact on a patient's quality of life (QoL); however, there is very limited data reflecting the emotional journey of patients with EoE or their perceived unmet needs. The aim of this study was to determine the emotional impact of EoE on patients at each stage of the patient journey. METHODS: In this cross-sectional and qualitative research study, adult patients with EoE from eight different countries provided their experiences and feelings across each stage of the patient journey through one-on-one semi-structured interviews. RESULTS: Twenty-one patients with EoE were enrolled in the study. The results of the one-on-one interviews showed that patients living with EoE go through an exhausting emotional experience during the different stages of the patient journey. In the pre-seeking-care stage, patients feel confused, afraid, frustrated, anxious, lonely, and misunderstood. During the diagnostic process, patients feel highly frustrated and angry because of the long and burdensome process. When EoE is finally diagnosed, patients feel liberated and relieved. When treatment is initiated, patients feel relief and enthusiasm, and, once the treatment starts to be effective and during the monitoring stage, they feel happier, less stressed, more confident, more relaxed, less fearful, and more in control owing to the improvement of their symptoms. CONCLUSIONS: This study pays attention to the different stages of the journey of patients with EoE. There is a lack of awareness by both physicians and patients that negatively affects every stage of the patient journey, but especially the initial phases of pre seeking care and diagnosis. We intend for this article to represent an opportunity to increase EoE awareness and to show the importance of considering the emotional impact on a patient with EoE's journey.
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Esofagitis Eosinofílica , Adulto , Humanos , Esofagitis Eosinofílica/complicaciones , Esofagitis Eosinofílica/diagnóstico , Esofagitis Eosinofílica/terapia , Calidad de Vida , Estudios Transversales , Ansiedad/etiologíaRESUMEN
INTRODUCTION: Progressive supranuclear palsy (PSP) is a neurodegenerative disorder initially characterised by disturbances in gait, balance and posture, with death occurring after several years of progressive physical and cognitive decline. This, along with a low index of suspicion, a high degree of diagnostic uncertainty and no approved treatment options, greatly impacts the lives of patients and caregivers. This research was conducted to (i) gain insight into the clinical and emotional journey of patients with PSP, (ii) assess experiences and perspectives, (iii) understand disease impact and (iv) identify key challenges and unmet needs. METHODS: A literature search and qualitative interviews with six PSP experts were conducted to map the clinical pathway and identify breakpoints. The pathway was validated by key opinion leaders in seven countries. Qualitative research was conducted over 6 months in seven countries with PSP stakeholders (N = 112) to explore the emotional journey. The approach included self-ethnography, 60-min telephone interviews and the completion of 7-day smartphone diaries. RESULTS: The current PSP clinical journey can take many different pathways, with patients cycling through the healthcare system before a correct referral is made and a possible/probable diagnosis received. Breakpoints contribute to delays in accessing appropriate clinical care, a high degree of diagnostic divergence and suboptimal management of the disease. The emotional journey is dominated by negative feelings, although some moments of positivity were noted. The research highlighted a lack of disease understanding amongst all stakeholders and a lack of support for patients/caregivers. The authors make a number of recommendations for care improvements, including longer consultation times, closer collaboration among healthcare professionals and patient organisations, and more varied support and information for patients/caregivers. CONCLUSION: This work represents a major collaborative effort to understand the lived experience of PSP. The research illustrates that a coordinated effort from all stakeholders is required to address ongoing needs and challenges within PSP.
Progressive supranuclear palsy (PSP) is a rare brain disorder caused by damaged nerve cells. PSP is often misdiagnosed as Parkinson's disease. Sufferers typically have issues with walking, eye movement, mood and memory, all of which worsen over time, and they often become entirely dependent on caregivers. Sadly, there is no cure, but day-to-day living can be supported. In this study, the researchers wanted to understand the lived experience of patients and families. First, researchers collected information from published sources about what it is like to live with PSP. Then they spoke with PSP experts, key opinion leaders, patients, caregivers, patient organisations, neurologists and nurses in the UK, France, Italy, Germany, Spain, the USA and Japan. This revealed important learnings about the clinical and emotional journey in PSP. There is a need for patients, caregivers and healthcare professionals to have open dialogue and build trust. Moreover, a closer collaboration between patient organisations and healthcare professionals could lead to improved care. Caregivers emerged as invisible heroes, and PSP care must prioritise support for them, in addition to patients. This study provides invaluable insights into the lived experience of patients and caregivers, as well as recommendations for supporting their clinical and emotional journey.
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PURPOSE: Our present study was a qualitative investigation intending to explore the emotional journey of wives whose spouse has been diagnosed with Bipolar I Disorder, using a phenomenological design. METHOD: Semi-structured face to face interviews were conducted with 5 wives of already diagnosed Bipolar I Disorder patients to uncover their lived experience in terms of the emotional journey they had had. For data analysis, we used Hycner's explicitation process. Moreover, for data verification we employed the strategies of frequent debriefing sessions peer review and member checks. RESULTS: Our analysis revealed six major themes encapsulating the participants emotional journey. These included Shock, Betrayal and the Incomprehensible, Apprehensions and Uncertainty, Anger and Irritability, Loneliness and Helplessness, Compassion and Acceptance and Reconciliation. CONCLUSION: It became clear to us that wives of individuals diagnosed with Bipolar I Disorder are on a continuous emotional journey dealing with the burden, stress, complications, uncertainty and making many sacrifices along the way. Our study highlighted many culture specific factors of the phenomenon. This insightful exploration has opened up new horizons to conceptualize the challenges of wives dealing with an ailing spouse in the context of a Pakistani society.