Annette Hand

The metric properties of a novel non-motor symptoms scale for Parkinson's disease: Results from an international pilot study

Non‐motor symptoms (NMS) in Parkinsons disease (PD) are common, significantly reduce quality of life and at present there is no validated clinical tool to assess the progress or potential response to treatment of NMS. A new 30‐item scale for the assessment of NMS in PD (NMSS) was developed. NMSS contains nine dimensions: cardiovascular, sleep/fatigue, mood/cognition, perceptual problems, attention/memory, gastrointestinal, urinary, sexual function, and miscellany. The metric attributes of this instrument were analyzed. Data from 242 patients mean age 67.2 ± 11 years, duration of disease 6.4 ± 6 years, and 57.3% male across all stages of PD were collected from the centers in Europe, USA, and Japan. The mean NMSS score was 56.5 ± 40.7, (range: 0–243) and only one declared no NMS. The scale provided 99.2% complete data for the analysis with the total score being free of floor and ceiling effect. Satisfactory scaling assumptions (multitrait scaling success rate >95% for all domains except miscellany) and internal consistency were reported for most of the domains (mean α, 0.61). Factor analysis supported the a prori nine domain structure (63% of the variance) while a small test–retest study showed satisfactory reproducibility (ICC > 0.80) for all domains except cardiovascular (ICC = 0.45). In terms of validity, the scale showed modest association with indicators of motor symptom severity and disease progression but a high correlation with other measures of NMS (NMSQuest) and health‐related quality of life measure (PDQ‐8) (both, rS = 0.70). In conclusion, NMSS can be used to assess the frequency and severity of NMS in PD patients across all stages in conjunction with the recently validated non‐motor questionnaire.

Prevalence of nonmotor symptoms in Parkinson's disease in an international setting: study using nonmotor symptoms questionnaire in 545 patients

2006, there was, no single instrument (questionnaire or scale) for attempting a comprehensive assessment of the wide range of nonmotor symptoms (NMS) of Parkinsons disease (PD). The PD nonmotor group, a multidisciplinary group of experts including patient group representatives developed and validated the NMS screening questionnaire (NMSQuest) comprising 30 items. The NMSQuest is a self completed screening tool designed to draw attention to the presence of NMS. In this paper, we present the results gathered from 545 patients using the definitive version of the NMSQuest highlighting the prevalence of the wide range of NMS flagged in the NMSQuest from consecutive PD patients in an international setting.

The prevalence of Parkinson's disease in a rural area of North-East England.

AIMS AND OBJECTIVES We have previously reported the age-adjusted prevalence of idiopathic Parkinsons disease (PD) in North Tyneside, an urban area of North-East England, as 139 cases (95% CI 116 to 162) per 100,000. The aim of this study was to report the prevalence of idiopathic PD in a rural area of North-East England. METHODS The same case-finding methodology as that employed in North Tyneside was used to identify cases of PD in an area of North Northumberland with a population of 59,613 at the 2001 UK census. All GPs in the study area were asked to provide details of patients registered with their service that may have PD or were on PD medication. Furthermore, all patients registered with the local PD service or under the care of a consultant neurologist or other relevant secondary care specialist were considered for inclusion. Inclusion in the study required fulfillment of the UK Brain Bank criteria. RESULTS One-hundred-and-six cases were identified (50 women and 56 men), giving crude and age-adjusted prevalence estimates of 178 cases (95% CI 144 to 212) and 142 cases (95% CI 118 to 165) per 100,000 respectively. The age-adjusted prevalence rate within our rural study area was remarkably similar to that seen in other urban UK studies. Only 71 cases (67.0%) were identified through GP records. CONCLUSIONS The prevalence of PD rural and urban areas of North-East England is remarkably similar.

Sexual and relationship dysfunction in people with Parkinson's disease.

OBJECTIVES To quantify the extent of self-reported sexual and relationship problems in people with Parkinsons disease (PD). METHODS A cross-sectional correlation design was used. All people with idiopathic PD, according to the UK Brain Bank criteria, who were known to the Northumbria Healthcare NHS Trust PD service, were asked to participate. Those who consented were assessed by a research nurse during a six month period using a series of rating scales, including the Unified Parkinsons Disease Rating Scale (UPDRS), the PD Questionnaire-39, the Mini Mental State Examination (MMSE), the Szasz sexual functioning scale and, for those in long-term relationships, the Golombok Rust Inventory of Marital State. RESULTS Concern over sexual function was reported in 22 (25%) of the 88 participants in the study. Males (p = 0.001) and younger people with PD (p = 0.001) were significantly more likely to report problems with sexual function. Gender (p = 0.007) and UPDRS score (p = 0.045) were significant independent predictors of relationship problems. Males with PD and those with increasing functional problems (UPDRS score) were more likely to report problems in their relationship. Disease duration and levels of anxiety and depression (Hospital Anxiety and Depression scale) were not associated with sexual or relationship problems. CONCLUSIONS Sexual and relationship dysfunction was a problem for many people in this study, but these problems were unlikely to be volunteered unless specifically enquired about. Problems were apparent across all age groups and genders.

Experience of care home residents with Parkinson's disease: Reason for admission and service use

The care needs of people with Parkinsons disease (PD) are poorly understood. We aimed to investigate the factors that precipitate entry to institutional care, and on‐going care needs once in care, within a representative cohort of community‐dwelling people with PD.

The role and profile of the informal carer in meeting the needs of people with advancing Parkinson's disease

ABSTRACT Background: Many people with Parkinsons disease (PD) (PwP) require care from either informal or formal carers, due to worsening symptoms. Carer strain is a recognised consequence of caring. However there are few data on the role and profile of informal carers and if this impacts on carer strain. Method: People with moderate to advanced PD, with an informal carer were invited to participate. Data regarding motor and non-motor symptoms of the participant, along with demographics, tasks and duration of caring and health issues of the carer were collected. Results: One-hundred and fifteen participants and their carer were recruited. Mean carer age was 70.7 years, 66.1% were female caring for a median of 16 hours per day. Over 80% provided help in housework and companionship activities, 63.2% with dressing and 49.1% with feeding. There was a significant relationship between disease stage and level of strain. Participant age, physical and cognitive disability were significantly associated with greater care need. High care need was associated with poor carer quality of life. Conclusions: The care needs of PwP are considerable. To reduce carer strain and improve quality of life, carers’ needs must be considered to enable them to carry on with their vital role.

Medication use in people with late stage Parkinson's disease and parkinsonism living at home and in institutional care in north-east England: A balance of symptoms and side-effects?

BACKGROUND People with Parkinsons disease (PD) and parkinsonism living in care homes (residential or nursing care) in the UK represent around 10-15% of all people with PD and 3-5% of all care home residents. There are few previous data on medication use in those living in care homes with PD. In this study we aimed to compare medication use in a representative cohort of people with PD living in care homes in north-east England with those living in their own homes. METHOD All people with late stage (Hoehn and Yahr III-V) idiopathic PD, PD dementia, or atypical parkinsonian syndromes under the care of the Northumbria Healthcare NHS Foundation Trust PD service on 1st January 2015 were identified. Demographic, disease characteristics and medication use data were collected from an audit of medical notes of all those identified. RESULTS We identified 377 people who met the inclusion criteria, 91 (24.1%) of whom were living in a care home. Disease stage, age and age at disease onset were all significantly higher and levodopa equivalent dose significantly lower in those living in care homes, although disease duration and levodopa dose were not. Greater age, lower levodopa equivalent dose and higher disease stage were independently associated with being in a care home. CONCLUSIONS Although people in care homes had more advanced disease, they were on a significantly lower levodopa equivalent dose. This is likely to be due to the requirement to balance symptom management with drug side-effects.

Understanding the Care Needs and Profile of People Living at Home With Moderate to Advanced Stage Parkinson Disease

Background: In the United Kingdom, people with Parkinson disease (PD) and atypical parkinsonism will require more support with their care needs as the condition progresses. There are few data on the nature of care input required and the amount of informal and formal care needed by people with PD to enable them to remain within their own home. Method: All people with moderate to advanced stage (Hoehn and Yahr III-V) idiopathic PD and atypical parkinsonism under the care of the Northumbria Healthcare NHS Foundation Trust PD service and living in their own home were invited to take part in The Northumbria Care Needs Project, a 10-year prospective longitudinal study. At baseline, data regarding formal (paid) personal and domestic care input and use of respite care, sitting services, and day centers were collected. We also collected data on patient cognitive disability, functional disability, and disease severity and informal carer tasks. Results: Of 162 people with PD included in the study, only 25.2% accessed formal domestic care and the same proportion formal personal care. In contrast, 80.2% identified an informal carer who helped with these tasks. Despite greater level of functional disability in those with an informal carer, levels of formal personal care input were similar to those with and without a formal carer. Levels of formal domestic carer input were higher in those without an informal carer. Conclusions: Use of formal care services was relatively uncommon in our cohort and much of the burden of caring appears to be being met by informal carers.

The Pattern of Hospital Admissions Prior to Care Home Placement in People With Parkinson’s Disease: Evidence of a Period of Crisis for Patients and Carers

Objectives: We hypothesized that the number and length of hospital admissions in people with Parkinson’s disease (PD) would increase immediately prior to admission to a care home relative to those who were able to continue living at home or who died. Method: PD patients at Hoehn and Yahr Stages III to V were followed-up over two and a half years with deaths and care home placements recorded. Hospital admissions data were collected over this period. Results: Of 286 patients included in the study, 7.3% entered a care home and 28.3% died. In the final 120 days prior to the study exit point (care home placement, death, or continued living at home), longer hospital stay was significantly associated with care home placement, after adjusting for the competing risk of death. Conclusion: Our data provide evidence that, for many people with PD, a period of crisis is reached immediately prior to care home placement.

Highlighting the goals for Parkinson’s care: commentary on NICE Guidelines for Parkinson’s in Adults (NG71)

Parkinsons disease is a chronic multi-system disease that can cause motor and non-motor symptoms, cognitive changes and variably effective medications. Optimal management of the condition requires a multi-disciplinary team of healthcare professionals to work closely with the patient and their carers. The National Institute for Health and Care Excellence published updated guidelines on managing Parkinsons disease in adults in 2017. Here we discuss the implications of this guidance to current healthcare professionals involved in the care of people with Parkinsons disease. The guidance highlights the importance of clear communication with people with Parkinsons disease. We discuss examples of this, including providing a point of contact with specialist services for people with Parkinsons disease and ensuring information about the risks of impulse control disorders are given to people on dopaminergic therapy. The breadth of services required by people with Parkinsons disease is also described, including the need for access to physiotherapy, occupational therapy and speech and language therapy as well as treatment monitoring services for Clozapine. In addition, we emphasise the continued importance of ensuring people with Parkinsons disease receive their medications on time when in hospital or a care home.