Emma Noble

Swallowing problems in Parkinson disease: frequency and clinical correlates

Background: Changes to the efficiency and integrity of swallowing mechanisms are inevitable in Parkinson disease (PD); however, it remains unclear how many people with PD are at risk of dysphagia. The aim of this study was to establish the frequency of impaired swallowing in people with PD and the relationship between swallowing performance and indicators of disease progression. Methods: A community-based and hospital-based cohort of 137 individuals with PD were asked to drink 150 ml of water as quickly as possible while in an ‘off drug’ state. Results: Thirty-one (23%) patients could not completely drink the full 150 ml. Swallowing rate (ml/sec) fell to more than 1SD below published norms for 115 (84%) patients and to more than 2SD below for 44 (32%) individuals. There were moderate correlations between rate of swallowing and disease severity, depression and cognition, but not between swallowing speed and disease duration. There was poor correlation between subjective reports of dysphagia and performance on the water swallow test. Conclusions: Swallowing problems are frequent in PD. Self-report of ’no difficulty’ is not a reliable indicator of swallowing ability. Studies employing more-objective assessment of aspiration risk to compare with water swallow test performance are advocated.

Prevalence and pattern of perceived intelligibility changes in Parkinson’s disease

Background: Changes to spoken communication are inevitable in Parkinson’s disease (PD). It remains unclear what consequences changes have for intelligibility of speech. Aims: To establish the prevalence of impaired speech intelligibility in people with PD and the relationship of intelligibility decline to indicators of disease progression. Methods: 125 speakers with PD and age matched unaffected controls completed a diagnostic intelligibility test and described how to carry out a common daily activity in an “off drug” state. Listeners unfamiliar with dysarthric speech evaluated responses. Results: 69.6% (n = 87) of people with PD fell below the control mean of unaffected speakers (n = 40), 51.2% (n = 64) by more than −1 SD below. 48% (n = 60) were perceived as worse than the lowest unaffected speaker for how disordered speech sounded. 38% (n = 47) placed speech changes among their top four concerns regarding their PD. Intelligibility level did not correlate significantly with age or disease duration and only weakly with stage and severity of PD. There were no significant differences between participants with tremor dominant versus postural instability/gait disorder motor phenotypes of PD. Conclusions: Speech intelligibility is significantly reduced in PD; it can be among the main concerns of people with PD, but it is not dependent on disease severity, duration or motor phenotype. Patients’ own perceptions of the extent of change do not necessarily reflect objective measures.

National survey of speech and language therapy provision for people with Parkinson's disease in the United Kingdom: therapists’ practices

BACKGROUND Communication and swallowing changes feature prominently in Parkinsons disease. People with Parkinsons disease appear under-represented in speech-language therapy clinics in the United Kingdom. The nature of the speech-language therapy services in the UK to people with Parkinsons disease has not been examined. AIMS To ascertain the number of speech-language therapists in the UK who work with people with Parkinsons disease; to establish the nature of contacts in terms of caseloads, referral stages and routes, management practices, assessments and treatments employed; and to reflect on service provision in relation to published guidelines. METHODS & PROCEDURES A questionnaire survey of speech-language therapists. OUTCOMES & RESULTS A total of 185 speech-language therapists responded. They were treating a median of three (inter-quartile range (IQR) = 1-6) people with Parkinsons disease with a further median of five (IQR = 1-10) on review. The majority of contacts were for assessment and advice given, especially in later and earlier stages of Parkinsons disease. Typically, respondents offered a median of six sessions (IQR = 6-8) of treatment, each session lasting a median of 45 min (IQR = 45-60), delivered over a median period of 42 days (IQR = 28-56). Speech-language therapists worked in a variety of settings, predominantly hospital. They received referrals principally from medical specialities, from whom the majority had support. Referrals were perceived in general to be later in Parkinsons disease progression than desired. Assessment focused primarily on impairment measures, in contrast to a belief that therapy focus on activity and participation issues. Speech-language therapists were relatively confident in treating people with Parkinsons disease, but 75% wanted more training. CONCLUSIONS & IMPLICATIONS Speech-language therapist services for people with Parkinsons disease in the UK are restricted on most dimensions. Management practices often do not match guideline suggestions. Consideration needs to be given to the training for, content of and delivery of speech-language therapy services for people with Parkinsons disease.

Addressing the Financial Consequences of Cancer: Qualitative Evaluation of a Welfare Rights Advice Service

Background The onset, treatment and trajectory of cancer is associated with financial stress among patients across a range of health and welfare systems and has been identified as a significant unmet need. Welfare rights advice can be delivered effectively in healthcare settings, has the potential to alleviate financial stress, but has not yet been evaluated. We present an evaluation of a welfare rights advice intervention designed to address the financial consequences of cancer. Methods Descriptive study of welfare outcomes among 533 male and 641 female cancer patients and carers aged 4–95 (mean 62) years, who accessed the welfare rights advice service in North East England between April 2009 and March 2010; and qualitative interview study of a maximum variation sample of 35 patients and 9 carers. Results Over two thirds of cancer patients and carers came from areas of high socio-economic deprivation. Welfare benefit claims were successful for 96% of claims made and resulted in a median increase in weekly income of £70.30 (

Survey of speech and language therapy provision for people with Parkinson’s disease in the United Kingdom: patients’ and carers’ perspectives

109.74, €84.44). Thirty-four different types of benefits or grants were awarded. Additional resources were perceived to lessen the impact of lost earnings, help offset costs associated with cancer, reduce stress and anxiety and increase ability to maintain independence and capacity to engage in daily activities, all of which were perceived to impact positively on well-being and quality of life. Key barriers to accessing benefit entitlements were knowledge, system complexity, eligibility concerns and assumptions that health professionals would alert patients to entitlements. Conclusions The intervention proved feasible, effectively increased income for cancer patients and was highly valued. Addressing the financial sequelae of cancer can have positive social and psychological consequences that could significantly enhance effective clinical management and suitable services should be routinely available. Further research is needed to evaluate health outcomes definitely and assess cost-effectiveness.

Work or welfare after cancer? Explorations of identity and stigma.

BACKGROUND Communication and swallowing changes are prominent in Parkinsons disease, but there remains a lack of information regarding the experiences and expectations of people with Parkinsons disease in respect of speech-language therapy (SLT) services. AIMS To conduct a survey of people with Parkinsons disease and their carers in the United Kingdom to elicit their views concerning communication and swallowing changes in Parkinsons disease and the support they envisage in helping with these changes. METHODS & PROCEDURES A national survey utilizing a questionnaire developed for the project, accessible by people with Parkinsons disease in web-based, e-mail or paper forms. OUTCOMES & RESULTS A total of 168 people with Parkinsons disease (median = 7 years since diagnosis, range = 0.5-30) and 47 carers who provided their impression of the experience of the PwPD responded. Of these 215, 92 (43%) had no contact with SLT services. In general those who had seen an SLT found it a positive experience. Pointers for improvement centred around timing, intensity, duration and access to SLT as well as issues around transfer and maintenance of gains outside of clinic and (lack of) attention to psychosocial dimensions. Availability of ongoing support as the situation evolved and access to SLT when it was needed were two prominent features desired of a responsive service. CONCLUSIONS & IMPLICATIONS Responses suggest that when SLT is available it offers positive support, but respondents felt (re)access when and where SLT is needed could improve, as well as what aspects of swallowing and communication were addressed in assessment and therapy. We reflect on possible recommendations to address the challenges for SLT services in considering organization and content of provision.

Utility and accuracy of perceptual voice and speech distinctions in the diagnosis of Parkinson’s disease, PSP and MSA-P

With increasing numbers of people living with cancer, a greater focus is required on the social consequences of the disease. This article explores the connections between cancer and employment and the constraints imposed by ill health and wider structural conditions. Narrative data from 23 people of working age with cancer in north-east England collected longitudinally over 16 months highlight the impact of financial strain caused by temporary or permanent interruption to employment, and the positive benefits of an upstream welfare rights intervention in enabling participants to claim benefit entitlements and boost incomes. Returning to work, for those who were able, helped repair the disruption caused by the illness. For those unable to work, reliance on welfare benefits, while necessary, conferred a stigmatised identity that compounded the disruption wrought by cancer. While stigma occurs at the individual level, the structural dimensions of stigma need to be acknowledged in order to analyse the forces that cause, maintain and perpetuate the stigma associated with claiming welfare while ill. We conclude that current UK policies and welfare reforms to reduce sickness-related welfare claims will lead to greater hardship during periods of ill health and increase inequalities.

Life with communication changes in Parkinson’s disease

AIM To determine if perceptual speech measures distinguish people with Parkinsons disease (PD), multiple system atrophy with predominant parkinsonism (MSA-P) and progressive supranuclear palsy (PSP). METHODS Speech-language therapists blind to patient characteristics employed clinical rating scales to evaluate speech/voice in 24 people with clinically diagnosed PD, 17 with PSP and 9 with MSA-P, matched for disease duration (mean 4.9 years, standard deviation 2.2). RESULTS No consistent intergroup differences appeared on specific speech/voice variables. People with PD were significantly less impaired on overall speech/voice severity. Analyses by severity suggested further investigation around laryngeal, resonance and fluency changes may characterize individual groups. CONCLUSION MSA-P and PSP compared with PD were distinguished by severity of speech/voice deterioration, but individual speech/voice parameters failed to consistently differentiate groups.