An Ethnographic Study of Patient Life Experience in Early-Stage Parkinson's Disease in the United States and Germany.

INTRODUCTION: Existing qualitative research on early-stage Parkinson's disease draws on patients' reported disease experience, aiming to capture the symptoms and impacts most relevant to patients living with the disease. As a complement to this research, the present study investigated the patient experience of early-stage Parkinson's disease from a holistic, ethnographic perspective. We explored the attitudes, beliefs, and social structures that shape how people understand and adapt to life with early-stage Parkinson's disease. METHODS: Researchers interviewed 30 people with early-stage Parkinson's disease, 10 relatives, and 10 neurologists and movement disorder specialists in the USA and Germany. Many of these interviews took place in-person, allowing researchers to spend time in participants' homes and witness their daily lives. A multidisciplinary team of social scientists, clinical researchers, and patient organization representatives led the mixed-methods study design and analysis. In-depth ethnographic interviews yielded qualitative insights, with a quantitative survey following to assess their prevalence in a larger sample of 150 patients. RESULTS: In addition to developing a patient life experience pathway of early-stage Parkinson's disease, we identified five key thematic findings that provide insight into how the clinical features of the disease become meaningful to patients on the context of their daily lives, family relations, and subjective well-being: (1) People with early-stage Parkinson's disease start coming to terms with their disease before receiving a medical diagnosis; (2) Acceptance is not a finalized achievement, but a cyclical process; (3) People with early-stage Parkinson's disease "live in the moment" to make the future more manageable; (4) Slowing disease progression is an important goal driving the actions of people with early-stage Parkinson's; and (5) People with early-stage Parkinson's disease value information that is grounded in lived experience and relevant to their stage of disease progression. CONCLUSION: This holistic, ethnographic approach to patient life experience provided five key thematic findings that complement insights from qualitative and quantitative datasets on early-stage Parkinson's disease. An enhanced understanding of how early-stage Parkinson's symptoms impact patients' health-related quality of life and their broader social lives can help us better understand how patients make decisions about their usage of healthcare services and therapies.

This study aimed to understand the experience of people living with early-stage Parkinson's. In addition to looking at how symptoms impact people's daily lives, this research examined how people think about and give meaning to early-stage Parkinson's. The first step was to conduct interviews with people with early-stage Parkinson's, their relatives, and doctors. These interviews covered topics such as how people with early-stage Parkinson's are eventually diagnosed, where they go for information, and how they approach the future. In the second step recordings and transcripts of the interviews were analyzed in detail. The ideas and themes that emerged from analysis were used to create a picture of how people experience early-stage Parkinson's as part of their broader lives. Researchers identified five key insights: (1) people often begin to come to terms with Parkinson's before being diagnosed; (2) accepting Parkinson's is an ongoing process; (3) people with early-stage Parkinson's value living in the moment; (4) people with early-stage Parkinson's see slowing the worsening of the disease as an important goal; and (5) learning from the first-hand experience of others can be more valuable than scientific information. Ultimately, this research shows that understanding how early-stage Parkinson's fits into people's everyday lives can help researchers, doctors, and patient organizations provide more effective support and care.

Assessment of Health-Related Quality of Life between People with Parkinson's Disease and Non-Parkinson's: Using Data Drawn from the '100 for Parkinson's' Smartphone-Based Prospective Study.

Background: This study aims to assess the specific difference of the health-related quality of life between people with Parkinson's and non-Parkinson's. Methods: A total of 1710 people were drawn from a prospective study with a smartphone-based survey named '100 for Parkinson's' to assess health-related quality of life. The EQ-5D-5L descriptive system and the EQ visual analogue scale were used to measure health-related quality of life and a linear mixed model was used to analyze the difference. Results: The mean difference of EQ-5D-5L index values between people with Parkinson's and non-Parkinson's was 0.15 (95%CI: 0.12, 0.18) at baseline; it changed to 0.17 (95%CI: 0.14, 0.20) at the end of study. The mean difference of EQ visual analogue scale scores between them increased from 10.18 (95%CI: 7.40, 12.96) to 12.19 (95%CI: 9.41, 14.97) from baseline to the end of study. Conclusion: Data can be captured from the participants' own smart devices and support the notion that health-related quality of life for people with Parkinson's is lower than non-Parkinson's. This analysis provides useful evidence for the EQ-5D instrument and is helpful for public health specialists and epidemiologists to assess the health needs of people with Parkinson's and indirectly improve their health status.

A Depression Recognition and Treatment package for families living with Stroke (DepReT-Stroke): study protocol for a randomised controlled trial.

BACKGROUND: Depression occurs in up to 50% of patients after stroke and limits rehabilitation and recovery. Mood disorders are also highly prevalent in carers; their mental health intertwined with the physical and mental wellbeing of the person they are caring for. We argue that working with families, rather than patients alone may improve the treatment of depression in both patients and their carers enhancing the mental wellbeing and quality of life of both. METHODS: A single blind cluster randomised controlled trial to evaluate whether families after stroke who are treated with the Depression Recognition and Treatment package (DepReT-Stroke) in addition to treatment as usual (TAU) show improved mental well being compared to those families who receive only TAU. We aim to recruit one hundred and twenty-six families (63 in each group). The DepReT-Stroke intervention will help families to consider the various treatment options for depression, make choices about which are likely to fit best with their lives and support them in the use of self-help therapies (e.g. computerised Cognitive Behavioural Therapy or exercise). An essential component of the DepReT-Stroke package will be to help people adhere to their chosen treatment(s). The primary outcome will be the Mental Component Subscale of the SF-36 assessed at baseline and again six months post intervention. Effectiveness of the intervention will be determined using analysis of co-variance; comparing the mean change in MCS scores from baseline to six months follow-up adjusting for the clustering effects of baseline scores and family. An economic evaluation of the intervention will help us determine whether the intervention represents a cost-effective use of resources. DISCUSSION: Depression both for patients and their carers is common after stroke. Our Depression Recognition and Treatment package (DepReT-stroke) may help clinicians be more effective at detecting and managing a common co-morbidity that limits rehabilitation and recovery. TRIAL REGISTRATION: ISRCTN: ISRCTN32451749 Research Ethics Committee Reference Number: 10/H0310/23 Grant Reference Number: (NIHR) PB-PG-0808-17056.