Identifying barriers to help seeking for non-motor symptoms in people with Parkinson’s disease

Non-motor Symptoms (NMS) of Parkinson’s disease (PD) have a significant impact on quality of life. Despite this many NMS remain unreported by patients and consequently untreated. The present study explored barriers to help-seeking using two theoretical frameworks, the Common Sense Model of illness and Theoretical Domains Framework. 20 Participants completed semi-structured interviews to explore symptom beliefs and help-seeking behaviour. Uncertainty about the relationship of NMS to PD and lack of clarity around treatments were common. Embarrassment and communication difficulties were common for potentially sensitive symptoms such as sexual dysfunction. Symptom perceptions and beliefs about help-seeking acted as barriers to reporting NMS

Revising Diabetes Programming for Black Men and Their Families

Type-2 diabetes has increased 160% for African American males in the United States. This two-part study’s purpose was to apply social marketing theory to understand the Type-2 diabetes education needs of men in Iowa. Study One was a preference assessment of Type-2 diabetes education strategies. Four African American men participated in a series of four focus groups and indicated that they were interested in diabetes prevention programming with their families but not in having it labeled as diabetes education. Participating men would rather increase their physical activity as opposed to tracking their food intake. As a follow-up to this study, nine other African American males took part in Study Two, which used cooking demonstrations and recipe taste-testing with the men to examine their relationship to food in the context of managing their Type-2 diabetes. The findings of both studies, which provided insight into these African American men’s lifestyle as related to their Type-2 diabetes, could be useful for nursing professionals who have a critical role in navigating cultural, gender, and family norms while developing care plans, offering patient education, and promoting quality of life

Further explorations of illness uncertainty: Carer’s experiences of Parkinson’s disease

Objective: Dominant models of illness uncertainty define uncertainty as ‘an inability to determine the meaning of illness-related events’. Recent research has shown patient uncertainty to be multidimensional encompassing personal issues indirectly affected by illness. The nature of carer uncertainty has yet to be fully explored. The present study aimed to investigate the nature of illness uncertainty in the carers of patients with Parkinson’s disease (PD). Design: Eighteen carers of a spouse with PD participated in semi-structured interviews. Transcripts were thematically analysed, statements were coded as uncertain if they reflected ‘a lack of certainty, or a state of limited knowledge, understanding or worry regarding an existing or future outcome’. Results: The domains of uncertainty expressed by carers closely fitted the five domain framework of patient uncertainty: symptoms and prognosis, medical management, self-management, social functioning and impact. An additional ‘carer-role’ domain was identified. Conclusions: Carer uncertainty about PD went beyond issues directly related to the illness. The findings have implications for research into uncertainty suggesting that widely used measures may not be accurately capturing the nature of carer uncertainty about chronic illness. The breadth of uncertainty reported has implications for the provision of appropriate support to improve caregiver well-being

Cognitive dysfunction in Adult Congenital Heart Disease with different structural complexity

We carried out a cross-sectional study to assess cognitive function in a sample of adult CHD patients, within the Functioning in Adult Congenital Heart Disease study London. The association between cognitive functioning and disease complexity was examined. A total of 310 patients participated in this study. Patients were classified into four structural complexity groups – tetralogy of Fallot, transposition of the great arteries, single ventricle, and simple conditions. Each patient underwent neuropsychological assessment to evaluate cognitive function, including memory and executive function, and completed questionnaires to assess depression and anxiety. Among all, 41% of the sample showed impaired performance (>1.5 SD below the normative mean) on at least three tests of cognitive function compared with established normative data. This was higher than the 8% that was expected in a normal population. The sample exhibited significant deficits in divided attention, motor function, and executive functioning. There was a significant group difference in divided attention (F=5.01, p=0.002) and the mean total composite score (F=5.19, p=0.002) between different structural complexity groups, with the simple group displaying better cognitive function. The results indicate that many adult CHD patients display impaired cognitive function relative to a healthy population, which differs in relation to disease complexity. These findings may have implications for clinical decision making in this group of patients during childhood. Possible mechanisms underlying these deficits and how they may be reduced or prevented are discussed; however, further work is needed to draw conclusive judgements

First Results from the ISO‐IRAS Faint Galaxy Survey

We present the first results from the ISO-IRAS Faint Galaxy Survey (IIFGS), a program designed to obtain ISO observations of the most distant and luminous galaxies in the IRAS Faint Source Survey by filling short gaps in the ISO observing schedule with pairs of 12 μm ISOCAM and 90 μm ISOPHOT observations. As of 1997 October, over 500 sources have been observed, with an ISOCAM detection rate over 80%, covering over 1.25 deg^2 of sky to an 11.5 μm point-source completeness limit of approximately 1.0 mJy (corresponding to a ~10 σ detection sensitivity). Observations are presented for nine sources detected by ISOPHOT and ISOCAM early in the survey for which we have ground-based G- and I-band images and optical spectroscopy. The ground-based data confirm that the IIFGS strategy efficiently detects moderate-redshift (z = 0.11-0.38 for this small sample) strong emission line galaxies with L_(60 μm) ≳ 10^(11) L_☉; one of our sample has L_(60 μm) > 10^(12) L_☉ (H_0 = 75 km s^(-1) Mpc^(-1), Ω = 1). The infrared-optical spectral energy distributions are comparable to those of nearby luminous infrared galaxies, which span the range from pure starburst (e.g., Arp 220) to infrared QSO (Mrk 231). Two of the systems show signs of strong interaction, and four show active galactic nucleus (AGN)-like excitation; one of the AGNs, F15390+6038, which shows a high excitation Seyfert 2 spectrum, has an unusually warm far- to mid-infrared color and may be an obscured QSO. The IIFGS sample is one of the largest and deepest samples of infrared-luminous galaxies available, promising to be a rich sample for studying infrared-luminous galaxies up to z ~ 1 and for understanding the evolution of infrared galaxies and the star formation rate in the universe

The ISO-IRAS Faint Galaxy Survey

The ISO-IRAS Faint Galaxy Survey will obtain comprehensive space- and ground-based observations of the most distant and luminous galaxies in the IRAS Faint Source Survey. ISO observations are obtained by filling short gaps in the ISO observing schedule with pairs of 11.5μm ISOCAM and 90μm ISOPHOT observations. As of the October 1997 date of this Conference, over 500 sources have been observed by ISO with an ISOCAM detection rate exceeding 803. Ground-based spectrophotometry confirms that the IIFGS efficiently detects moderateredshift, strong emission line Luminous Infrared Galaxies. Spectrophotometry is currently available for 67 galaxies with 0.07 < z < 0. 7 and L_(fir) > 10^(11) L_☉. The galaxies are comparable to nearby LIGs, showing HII/Liner excitation; about 10% exhibit strong AGN characteristics. As a part of this survey we will cover over 1.25 square degrees of sky to an 11.5μm limit of approximately l.0mJy, allowing a sensitive estimate of the 11.5μm logN-logS Relationship. Preliminary ll.5μm source counts suggest substantial evolution in the mid-infrared galaxy population

Effectiveness and cost-effectiveness of a patient-initiated botulinum toxin treatment model for blepharospasm and hemifacial spasm: a study protocol for a randomised controlled trial

Background Blepharospasm and hemifacial spasm are debilitating conditions that significantly impact on patient quality of life. Cyclical treatment with botulinum toxin injections offers temporary relief, but the duration of treatment efficacy is variable. The standard model of patient care defines routine fixed-time based scheduled treatment cycles which may lead to unnecessarily frequent treatment for some patients and experience of distressing symptoms in others, if symptoms return before the scheduled follow-up period. Methods/Design A randomised controlled trial will compare a patient-initiated model of care, where patients determine botulinum toxin treatment timing, to the standard model of care in which care is scheduled by the clinical team. A sample of 266 patients with blepharospasm or hemifacial spasm will be recruited from Moorfields Eye Hospital (MEH), London. The trial will be accompanied by a mixed methods evaluation of acceptability of the new service. Patients who meet eligibility criteria will be assessed at baseline and those in the intervention group will be provided instructions on how to book their own treatment appointments. Patients in both groups will be followed up 3 and 9 months into the trial and all patients will be returned to usual care after 9 months to meet safety protocols. Primary outcome measures include disease severity (questionnaire), functional disability (questionnaire) and patient satisfaction with care (questionnaire). Secondary outcomes include disease-specific quality of life (questionnaire), mood (questionnaire), illness and treatment perceptions (questionnaire and semi-structured interviews), economic impact (questionnaire) and acceptability (questionnaire and semi-structured interviews). Discussion This trial will assess the effectiveness and cost-effectiveness of a patient-led care model for botulinum toxin therapy. If the new model is shown to be effective in reducing distress and disability in these populations and is found to be acceptable to patients, whilst being cost-effective, this will have significant implications for service organisation across the NHS. Trial registration UK Clinical Research Network (UKCRN) Portfolio 18660. Clinicaltrials.gov ID NCT102577224 (registered 29th October 2015