The experiences of carers looking after people with Parkinson's disease who exhibit impulsive and compulsive behaviours: An exploratory qualitative study.

AIM: To understand the experiences of carers who were confronted by the development of impulsive and compulsive behaviours. BACKGROUND: Impulsive and compulsive behaviours (ICBs) are a serious complication in Parkinson's disease (PD) strongly associated with dopamine replacement therapy used to treat patients. These behaviours comprise abnormal activities such as pathological gambling, binge eating, compulsive shopping and hypersexuality. These behaviours place a considerable burden on patients and on their carers and families. DESIGN: An exploratory qualitative study. METHODS: Using a convenience sampling approach, 13 carers were recruited to participate in semi-structured interviews. Interviews were conducted over the telephone. Verbatim transcripts were analysed using a thematic analysis approach. COREQ guidelines were adhered to in the reporting of this study. RESULTS: Five main themes were identified: (a) realisation-developing awareness of ICB symptoms and their causes; (b) reacting-confronting and attempts to manage ICBs; (c) reaching out-help-seeking and selective disclosure; (d) reframing-shifting perspectives on ICBs over time; and (e) resignation-impact on relationships and facing the future. CONCLUSIONS: The profound impact of ICBs on quality of life, relationships and economic stability was clear in the carers' accounts. Possible avenues for future clinical research are suggested. RELEVANCE TO CLINICAL PRACTICE: The potentially devastating effects of ICBs provide a strong imperative for nurses and other health professionals to ensure that close monitoring for symptom development together with patient education is always part of practice.

Improving Conversations about Parkinson's Dementia.

BACKGROUND: People with Parkinson's disease (PD) have an increased risk of dementia, yet patients and clinicians frequently avoid talking about it due to associated stigma, and the perception that "nothing can be done about it". However, open conversations about PD dementia may allow people with the condition to access treatment and support, and may increase participation in research aimed at understanding PD dementia. OBJECTIVES: To co-produce information resources for patients and healthcare professionals to improve conversations about PD dementia. METHODS: We worked with people with PD, engagement experts, artists, and a PD charity to open up these conversations. 34 participants (16 PD; 6 PD dementia; 1 Parkinsonism, 11 caregivers) attended creative workshops to examine fears about PD dementia and develop information resources. 25 PD experts contributed to the resources. RESULTS: While most people with PD (70%) and caregivers (81%) shared worries about cognitive changes prior to the workshops, only 38% and 30%, respectively, had raised these concerns with a healthcare professional. 91% of people with PD and 73% of caregivers agreed that PD clinicians should ask about cognitive changes routinely through direct questions and perform cognitive tests at clinic appointments. We used insights from the creative workshops, and input from a network of PD experts to co-develop two open-access resources: one for people with PD and their families, and one for healthcare professionals. CONCLUSION: Using artistic and creative workshops, co-learning and striving for diverse voices, we co-produced relevant resources for a wider audience to improve conversations about PD dementia.

A Retrospective Evaluation of the Frequency of Impulsive Compulsive Behaviors in Parkinson's Disease Patients Treated with Continuous Waking Day Apomorphine Pumps.

BACKGROUND: Impulsive compulsive behaviors (ICBs) can have a deleterious impact on the lives of patients with PD with orally active dopamine agonist treatment recognized as the greatest risk factor. However, the relationship between subcutaneous administration of the dopamine agonist, apomorphine, and impulsive compulsive behaviors is unknown. METHODS: We conducted a retrospective analysis of 28 advanced PD patients treated with subcutaneous waking day apomorphine ambulatory minipumps at the National Hospital for Neurology and Neurosurgery (London, UK). RESULTS: Twelve of the patients had experienced impulsive compulsive behaviors before starting apomorphine. Reduction of oral dopamine agonist dose before apomorphine had led to complete resolution in 6 cases with no recurrence on long-term apomorphine maintenance therapy. Six patients still had active impulsive compulsive behaviors when apomorphine was started. Four of these improved, and in the other 2 there was no worsening. Of the 16 patients with no previous history of impulsive compulsive behaviors who started apomorphine, only 1, who was still receiving concurrent levodopa, developed impulsive compulsive behaviors. CONCLUSIONS: These data provide preliminary evidence that continuous apomorphine pump therapy has a lower proclivity to trigger or exacerbate impulsive compulsive behaviors than oral dopamine agonists. This is likely to be attributed to a more tonic stimulation of striatal dopamine receptors leading to desensitisation, but could also be attributed to a different pharmacological profile of apomorphine compared with orally active dopamine agonists. Apomorphine can be considered as a treatment option in patients who have developed disabling impulsive compulsive behaviors on oral agonist therapy whose motor handicap cannot be controlled adequately on l-dopa alone. Further prospective studies are needed to provide a definitive answer to this question.

Improving the education and experience of foundation doctors in general surgery.

Reduced working hours and fragmentation of the surgical firm has resulted in a gradual change in FY1 duties. Locally, FY1 doctors were no longer routinely seeing surgical emergency admissions, while FY1s informally reported reduced confidence in dealing with surgical emergencies. The goal of this project was to assess the current training of FY1 doctors within the unit, and to attempt to improve this by increasing exposure to surgical emergencies. Two months into their four month surgical rotation, FY1s completed an anonymous online survey that focused on their confidence in dealing with emergency surgical admissions. Working practice was then changed by the creation of a formal emergency foundation year one (FY1) rota, and the introduction of a baton bleep. The expectation was that all emergency admissions would be clerked by an FY1 doctor. The cohort were asked to repeat the survey after implementation of change. Across all areas assessed, the confidence and experience of the junior doctors was improved. Initially 70% of FY1s felt exposure to emergency surgical cases was inadequate, falling to 0% after the intervention. This was associated with a rise in the average number of acute cases clerked by each FY1 per week from 1.2 to 4.0. At baseline, only 30% of those surveyed felt that they were gaining the skills and experience necessary to prepare them for an FY2 job in general surgery, and after the intervention this increased to 100%. The increased pressures of service provision within reduced working hours does not necessitate the exclusion FY1 doctors from the assessment and management of surgical emergencies. We have demonstrated that preserving this exposure is a priority in the training of junior doctors, resulting in more experienced and confident medical staff.