Study Protocol for the Development of a European eHealth Platform to Improve Quality of Life in Individuals With Huntington's Disease and Their Partners (HD-eHelp Study): A User-Centered Design Approach

Background: Huntington's disease (HD) is an autosomal dominant neurodegenerative disease that affects the quality of life (QoL) of HD gene expansion carriers (HDGECs) and their partners. Although HD expertise centers have been emerging across Europe, there are still some important barriers to care provision for those affected by this rare disease, including transportation costs, geographic distance of centers, and availability/accessibility of these services in general. eHealth seems promising in overcoming these barriers, yet research on eHealth in HD is limited and fails to use telehealth services specifically designed to fit the perspectives and expectations of HDGECs and their families. In the European HD-eHelp study, we aim to capture the needs and wishes of HDGECs, partners of HDGECs, and health care providers (HCPs) in order to develop a multinational eHealth platform targeting QoL of both HDGECs and partners at home.Methods: We will employ a participatory user-centered design (UCD) approach, which focusses on an in-depth understanding of the end-users' needs and their contexts. Premanifest and manifest adult HDGECs (n = 76), partners of HDGECs (n = 76), and HCPs (n = 76) will be involved as end-users in all three phases of the research and design process: (1) Exploration and mapping of the end-users' needs, experiences and wishes; (2) Development of concepts in collaboration with end-users to ensure desirability; (3) Detailing of final prototype with quick review rounds by end-users to create a positive user-experience. This study will be conducted in the Netherlands, Germany, Czech Republic, Italy, and Ireland to develop and test a multilingual platform that is suitable in different healthcare systems and cultural contexts.Discussion: Following the principles of UCD, an innovative European eHealth platform will be developed that addresses the needs and wishes of HDGECs, partners and HCPs. This allows for high-quality, tailored care to be moved partially into the participants' home, thereby circumventing some barriers in current HD care provision. By actively involving end-users in all design decisions, the platform will be tailored to the end-users' unique requirements, which can be considered pivotal in eHealth services for a disease as complex and rare as HD

Development of the Huntington Support App (HD-eHelp study): a human-centered and co-design approach

IntroductioneHealth seems promising in addressing challenges in the provision of care for Huntington’s disease (HD) across Europe. By harnessing information and communication technologies, eHealth can partially relocate care from specialized centers to the patients’ home, thereby increasing the availability and accessibility of specialty care services beyond regional borders. Previous research on eHealth (development) in HD is however limited, especially when it comes to including eHealth services specifically designed together with HD gene expansion carriers (HDGECs) and their partners to fit their needs and expectations.MethodsThis article describes the qualitative human-centered design process and first evaluations of the Huntington Support App prototype: a web-app aimed to support the quality of life (QoL) of HDGECs and their partners in Europe. Prospective end-users, i.e., HDGECs, their partners, and healthcare providers (HCPs), from different countries were involved throughout the development process. Through interviews, we captured people’s experiences with the disease, quality of life (QoL), and eHealth. We translated their stories into design directions that were further co-designed and subsequently evaluated with the user groups.ResultsThe resulting prototype centralizes clear and reliable information on the disease, HD-related news and events, as well as direct contact possibilities with HCPs via an online walk-in hour or by scheduling an appointment. The app’s prototype was positively received and rated as (very) appealing, pleasant, easy to use and helpful by both HDGECs and partners.DiscussionBy involving end-users in every step, we developed a healthcare app that meets relevant needs of individuals affected by HD and therefore may lead to high adoption and retention rates. As a result, the app provides low-threshold access to reliable information and specialized care for HD in Europe. A description of the Huntington Support App as well as implications for further development of the app’s prototype are provided

Excessive substance use in bipolar disorder is associated with impaired functioning rather than clinical characteristics, a descriptive study

<p>Abstract</p> <p>Background</p> <p>There is a strong association between bipolar disorder (BD) and substance use disorder (SUD). The clinical and functional correlates of SUD in BD are still unclear and little is known about the role of excessive substance use that does not meet SUD criteria. Thus, the aims of the current study were to investigate lifetime rates of illicit substance use in BD relative to the normal population and if there are differences in clinical and functional features between BD patients with and without excessive substance use.</p> <p>Methods</p> <p>125 consecutively recruited BD in- and outpatients from the Oslo University Hospitals and 327 persons randomly drawn from the population in Oslo, Norway participated. Clinical and functional variables were assessed. Excessive substance use was defined as DSM-IV SUD and/or excessive use according to predefined criteria.</p> <p>Results</p> <p>The rate of lifetime illicit substance use was significantly higher among patients compared to the reference population (OR = 3.03, CI = 1.9-4.8, p < .001). Patients with excessive substance use (45% of total) had poorer educational level, occupational status, GAF-scores and medication compliance, with a trend towards higher suicidality rates, compared to patients without. There were no significant group differences in current symptom levels or disease course between groups.</p> <p>Conclusion</p> <p>The percentage of patients with BD that had tried illicit substances was significantly higher than in the normal population. BD patients with excessive substance use clearly had impaired functioning, but not a worse course of illness compared to patients without excessive substance use. An assessment of substance use beyond SUD criteria in BD is clinically relevant.</p

Importance of climatic and environmental change in the demography of a multi-brooded passerine, the woodlark Lullula arborea

1. We examined the influence of local weather conditions on reproductive success, timing of breeding and survival in a population of a multi-brooded ground nesting passerine (woodlark Lullula arborea) over 35 years. 2. Woodlarks laid larger clutches when rainfall was low and temperature high during the egg-laying and pre-laying period. Nest success increased with higher temperatures during the nesting period. In successful nests, the number of chicks fledged per egg laid was greater when weather was drier during the brood stage. 3. Although woodlarks bred earlier in years with warmer early spring temperatures, with the onset of breeding varying by 25 days, there was no significant advance in the onset of breeding over the 35 years of study, due to considerable inter-annual variability, and no overall trend, in weather. 4. Simulation modelling of annual reproductive output demonstrated that earlier breeding could increase productivity by 235% in the warmest compared to the coldest year, due to birds having more nesting attempts. Other effects of weather on productivity affected breeding output to a lesser extent. 5. Effects of weather on productivity were minor compared to an increased rate of nest predation through the period of study, which reduced productivity by 498% by 2004 compared to 1971. 6. Turning points analysis identified three distinct demographic periods: from1971 to 1988 the population grew slowly, during 1988-1999 the population grew rapidly, but after 1999 the population declined. Increased population growth after 1988 was associated with higher first-year survival rates (estimated using a population model). Population decline after 1999 was caused by a combination of reduced productivity (resulting from increased nest failure rates attributed to predation) and lower first-year survival rates, that appear unrelated to winter temperature. 7. Climate change (long-term changes in weather) did not explain the marked changes observed in the population trajectory over 35 years. We suggest that understanding effects of both climate and habitat change on populations is essential in predictive population modelling

Biennial bearing in apple cultivars.

Biennial bearing is the process in fruit trees by which one year of high fruit load is followed by a very low load or no production the next year. In apple growing, this is a troublesome problem, because of the negative effect on crop yield accumulated over the years, fruit quality, and plant physiology. The objective of this study was to evaluate the biennial bearing of nine apple cultivars, grafted on two rootstocks using of the biennial bearing index (BBI). The indices were calculated for the scion cultivars Maxi-Gala, Gala Real, Royal Gala, Fuji Select, Fuji Suprema, Mishima, Daiane, and Cripps Pink based on the yields from the harvests from 2008 to 2013. The apple cultivars exhibited no significant alternate production, considering the range of variation of the index. For the M-9 rootstock, cv. Fuji Suprema showed the highest BBI. For Marubakaido/M-9, Baigent, Mishima, Fuji Select, and Maxi-Gala showed the highest indices. There was no correlation between the biennial bearing index and the stem cross section of the scion cultivars, regardless of the rootstock used. Keywords: Malus x domestica; yield; fruit thinning Alternância de produção de cultivares de macieira A alternância de produção caracteriza-se por um ano de elevada carga de frutos, seguido de outro ano com produção muito baixa ou nula. Na cultura da macieira é um problema indesejável, devido ao efeito negativo sobre a produtividade acumulada ao longo dos anos, qualidade da fruta e fisiologia da planta. O objetivo do trabalho foi avaliar a alternância de produção de nove cultivares de macieira, enxertadas sobre dois porta-enxertos, por meio da aplicação do índice de alternância de produção (IAP). A partir das produtividades observadas nas safras 2008 a 2013, foram calculados os IAP para as cultivares Baigent, Maxi-Gala, Gala Real, Royal Gala, Fuji Select, Fuji Suprema, Mishima, Daiane e Cripps Pink. As cultivares de macieira não apresentaram forte alternância de produção, considerando a amplitude de variação do índice utilizado. No porta-enxerto M-9, a cultivar Fuji Suprema exibiu IAP maior que as demais cultivares. No Marubakaido/M-9, os maiores índices foram apresentados por "Baigent", "Mishima", "Fuji Select" e "Maxi-Gala". Não houve correlação entre o índice de alternância de produção e a área transversal do caule das cultivares, independentemente do porta-enxerto utilizado. Palavras-chave: Malus x domestica; produtividade; raleio de fruto