Emilie I. Howe

Unmet needs for healthcare and social support services in patients with Huntington's disease: a cross-sectional population-based study.

BackgroundIn order to plan and improve provision of comprehensive care in Huntington’s disease (HD), it is critical to understand the gaps in healthcare and social support services provided to HD patients. Research has described utilization of healthcare services in HD in Europe, however, studies systematically examining needs for healthcare services and social support are lacking. This study aims to identify the level and type of met and unmet needs for health and social care services among patients with HD, and explore associated clinical and socio-demographic factors.MethodsEighty-six patients with a clinical diagnosis of HD living in the South-Eastern region of Norway were recruited. Socio-demographic and clinical characteristics were collected. The Needs and Provision Complexity Scale (NPCS) was used to assess the patients’ needs for healthcare and social services. Functional ability and disease stage was assessed using the UHDRS Functional assessment scales. In order to investigate factors determining the level of total unmet needs and the level of unmet needs for Health and personal care and Social care and support services, multivariate logistic regression models were used.ResultsA high level of unmet needs for health and personal care and social support services were found across all five disease stages, but most marked in disease stage III. The middle phase (disease stage III) and advanced phase (disease stages IV and V) of HD increased odds of having a high level of total unmet needs by 3.5 times and 1.4 times respectively, compared with the early phase (disease stages I and II). Similar results were found for level of unmet needs in the domain Health and personal care. Higher education tended to decrease odds of high level of unmet needs in this domain (OR = 0.48) and increase odds of higher level of unmet needs in the domain of Social care and support (OR = 1.3). Patients reporting needs on their own tended to decrease odds of having unmet needs in Health and personal care (OR = 0.57).ConclusionsNeeds for healthcare and social services in patients with HD should be assessed in a systematic manner, in order to provide adequate comprehensive care during the course of disease.

Disability and quality of life 20 years after traumatic brain injury

The study describes functional outcomes and health‐related quality of life (HRQL) in patients with traumatic brain injury (TBI) 20 years postinjury.

Assistive Technology for Cognition and Health-related Quality of Life in Huntington’s Disease

Background: Assistive technology for cognition (ATC) can be defined as external devices aimed at supporting cognitive function. Studies in neurological populations suggest that use of ATC is a promising strategy to ameliorate negative effects of cognitive impairment and improve Health-related Quality of Life (HRQoL). There is a lack of studies on the effects of ATC in HD. Objective: This study aimed to describe the use of ATC in patients with HD, and to investigate the association between ATC and HRQoL. Methods: A cross-sectional population-based study, including eighty-four patients with a clinical HD diagnosis (stages I–V). Socio-demographic and clinical data were collected, including information regarding various aspects of ATC use and an evaluation of cognitive impairment was performed. The Unified Huntington’s Disease Rating Scale (UHDRS) Total Functional Capacity scale (TFC) and the EQ-5D Visual Analogue Scale were used to evaluate functional ability and HRQoL. Descriptive analyses were conducted to describe ATC use and regression analyses to investigate associations between ATC and HRQoL. Results: Thirty-seven percent of the patients had ATC, and ATC was used most frequently in stages I-III. Information about ATC, needs evaluation and training was provided to 44%, 32.1% and 20.2% respectively. The regression analysis showed a significant association between TFC and HRQoL (β value = –0.564, p = 0.001), but there was no association between ATC and HRQoL. Conclusions: One-third of all patients used ATC, mainly those with mild to moderate cognitive impairment (stage I –III). No association between ATC and HRQoL was found. More research is needed to investigate effects of ATC in HD.

Health-related quality of life and unmet healthcare needs in Huntington’s disease

BackgroundHuntington’s disease (HD) is a rare neurodegenerative disorder with a prevalence of 6 per 100.000. Despite increasing research activity on HD, evidence on healthcare utilization, patients’ needs for healthcare services and Health-Related Quality of Life (HRQoL) is still sparse. The present study describes HRQoL in a Norwegian cohort of HD patients, and assesses associations between unmet healthcare and social support service needs and HRQoL.MethodsIn this cross-sectional population-based study, 84 patients with a clinical diagnosis of HD living in the South-East of Norway completed the HRQoL questionnaire EuroQol, EQ-5D-3L. Unmet needs for healthcare and social support services were assessed by the Needs and Provision Complexity Scale (NPCS). Furthermore, functional ability was determined using the Unified Huntington’s Disease Rating Scale (UHDRS) Functional assessment scales. Socio-demographics (age, gender, marital status, occupation, residence, housing situation) and clinical characteristics (disease duration, total functional capacity, comorbidity) were also recorded. Descriptive statistics were used to describe the patients’ HRQoL. Regression analyses were conducted in order to investigate the relationship between unmet healthcare needs and self-reported HRQoL.ResultsThe patients were divided across five disease stages as follows: Stage I: n = 12 (14%), Stage II: n = 22 (27%), Stage III: n = 19 (23%), Stage IV: n = 14 (16%), and Stage V: n = 17 (20%). Overall HRQoL was lowest in patients with advanced disease (Stages IV and V), while patients in the middle phase (Stage III) showed the most varied health profile for the five EQ-5D-3L dimensions. The regression model including level of unmet needs, clinical characteristics and demographics (age and education) accounted for 42% of variance in HRQoL. A higher level of unmet needs was associated with lower HRQoL (β value - 0.228; p = 0.018) whereas a better total functional capacity corresponded to higher HRQoL (β value 0.564; p < 0.001).ConclusionsThe study findings suggest that patients with HD do not receive healthcare services that could have a positive impact on their HRQoL.

K1 Gaps between needs and provision of services in huntington’s disease: a cross-sectional population study

Background Despite promising ongoing clinical trials there is no curative treatment for Huntington’s disease (HD), and patients need tailored comprehensive healthcare for optimal function and quality of life. No studies have systematically investigated the unmet needs for healthcare and social services or their associations with other factors such as patients’ quality of life. Aims The present study aims to identify the level and type of unmet healthcare service needs using a newly developed scale, the Needs and Provision Complexity Scale (NPCS), and to examine associations with clinical and socio-demographic factors. Methods 86 patients living in South-East Norway were included in a cross-sectional population based study. Socio-demographic and clinical characteristics were collected. We used the NPCS to evaluate unmet healthcare services needs, the Unified Huntington’s Disease Rating Scale’s Total Functional Capacity to measure functional ability (stages I-V), and EQ-5D Visual Analogue Scale to assess health-related Quality of Life (HRQoL). Descriptive and multivariate regression analyses were used. Results 79 patients reported unmet needs for healthcare and social services. High levels of unmet needs were found in all disease stages, but being in stage III increased the odds of having a high level of unmet needs by 3.5 times. Higher levels of unmet needs were associated with lower HRQoL (β value: −0.228; p = 0.018). Conclusions Many patients do not receive the tailored care they need to maintain and improve function and quality of life. Clinicians should systematically assess needs for healthcare and social services, in addition to performing clinical evaluations, specifically of patients in the middle disease stage. Norway is a well-fare state, and these findings indicate that increased awareness of HD is needed on the policy level. Studies from different countries are needed to verify the results across differently organised health-care systems.