The experience of care partners of patients with Parkinson's disease psychosis.

BACKGROUND: Parkinson's disease psychosis (PDP) has a major impact on quality of life and care partner burden; however, little is known about the lived experiences of care partners in managing PDP. OBJECTIVE: To understand how care partners of individuals with PDP experience their role and articulate their needs related to psychosis. METHODS: This was a qualitative study of semi-structured telephone interviews. Recruitment was conducted online via the clinical study matching tool, Fox Trial Finder; study activities took place remotely via telephone interviews. Transcripts of the phone interviews were analyzed by grounded theory methods, and a codebook of key themes that emerged from the analysis was developed. RESULTS: Nine care partners (all female) were interviewed. Discussion topics in the codebook included (1) care partner burden and guilt; (2) communication with medical professionals; (3) coping strategies; (4) emotional reactions of the care partner to psychosis; (5) sources of knowledge about PD psychosis; (6) attitudes towards medications for PDP; (7) strategies to care for loved ones with psychosis; (8) psychosis triggers. CONCLUSIONS: This qualitative analysis uncovers important aspects of the care partner experience, including challenges in navigating the medical system and communicating with professionals. Providers treating patients with PDP should be aware of these constraints and provide added support for strained care partners.

The Most Bothersome Aspects of Off Periods Reported by Individuals with Parkinson's Disease.

INTRODUCTION: The off periods in Parkinson's disease have a significantly negative impact on quality of life. What the most bothersome aspects of off periods are from the patient's perspective are not well studied, nor is the degree to which screening tools for wearing off such as the Wearing Off Questionnaires (WOQs) capture what bothers patients most. METHODS: A questionnaire was deployed to eligible participants of Fox Insight, an online study of individuals with self-reported Parkinson's disease. Inclusion criteria were the use of ≥1 dopaminergic medications and an affirmative response to a question on experiencing off periods. Participants provided free-text responses regarding the top 3 most bothersome symptoms they experience when off. A determination was made regarding whether each response would have been captured by the 32-item, 19-item, and 9-item WOQs. RESULTS: The final sample had 2106 participants, a mean age of 66.6 years, 52.3% were men, and had a disease duration of 4.9 years. The WOQ-32 items covered all of the most bothersome symptoms for 53.2% of respondents. Among bothersome aspects of off not captured by the WOQs, 597 (66.2%) were specific symptoms, with freezing of gait, apathy, and memory problems being the most common. The functional consequences of off periods were most bothersome to 232 (25.7%), with walking problems being the most common. The emotional response to off periods was the most bothersome aspect to 169 respondents (18.7%). DISCUSSION: This study emphasizes the value of narrative data in understanding patient experiences, and what bothers patients most about off periods. The WOQs, although of established utility in the screening for wearing off, may not capture those symptoms most bothersome to patients.

Public response to the 2009 influenza A H1N1 pandemic: a polling study in five countries.

BACKGROUND: Many important strategies to reduce the spread of pandemic influenza need public participation. To assess public receptivity to such strategies, we compared adoption of preventive behaviours in response to the 2009 H1N1 influenza pandemic among the public in five countries and examined whether certain non-pharmaceutical behaviours (such as handwashing) were deterrents to vaccination. We also assessed public support for related public health recommendations. METHODS: We used data from simultaneous telephone polls (mobile telephone and landline) in Argentina, Japan, Mexico, the UK, and the USA. In each country, interviews were done in a nationally representative sample of adults, who were selected by the use of random digit dial techniques. The questionnaire asked people whether or not they had adopted each of various preventive behaviours (non-pharmaceutical--such as personal protective and social distancing behaviour--or vaccinations) to protect themselves or their family from H1N1 at any point during the pandemic. Two-tailed t tests were used for statistical analysis. FINDINGS: 900 people were surveyed in each country except the USA where 911 people were contacted. There were wide differences in the adoption of preventive behaviours between countries, although certain personal protective behaviours (eg, handwashing) were more commonly adopted than social distancing behaviours (eg, avoiding places where many people gather) across countries (53-89%vs 11-69%). These non-pharmaceutical behaviours did not reduce the likelihood of getting vaccinated in any country. There was also support across all countries for government recommendations related to school closure, avoiding places where many people gather, and wearing masks in public. INTERPRETATION: There is a need for country-specific approaches in pandemic policy planning that use both non-pharmaceutical approaches and vaccination. FUNDING: US Centers for Disease Control and Prevention and the National Public Health Information Coalition.