Primary health care professionals' experiences with caring for patients with advanced Huntington's disease: a qualitative study.

BACKGROUND: Huntington's disease (HD) has substantial impact on patients and carers' lives. Managing patients in the advanced phase of HD may be challenging to primary health care professionals. The aim of this study is to elicit health care professionals' experiences of managing the challenges with patients with advanced HD in primary health care. METHODS: We did a qualitative study, collecting data from four focus group interviews with 22 primary health care professionals who had experience with caring for patients with HD in Norway. The data were analysed using a qualitative content analysis method, systematic text condensation. RESULTS: We found that health care professionals who care for patients with HD in primary health care experience challenges related to patients' behaviour, family members and caregivers, professionals' individual competency, and the organizational context. They conveyed that successful care and management of patients with advanced HD was dependent on individuals' competency and "everyday tactics", well-functioning teams, and leadership and organizational support. CONCLUSION: In addition to individual competencies, including being personally suitable for the job, well-functioning primary care teams, and organization support and training is important for health care professionals' ability to manage patients with advanced HD in primary health care.

Needs for community-based rehabilitation services and support 12 months after moderate and severe physical traumatic injuries: a brief report.

ABSTRACT: Patients with physical traumatic injuries frequently require long-term rehabilitation services. To strengthen rehabilitation services in the post-acute phase, we need to assess characteristics of this population and their healthcare and rehabilitation needs in the community. This brief report summarizes the frequency of unmet rehabilitation needs in community-based rehabilitation during the first year after moderate and severe trauma. Additionally, the associations between sociodemographic, injury severity factors and unmet needs were examined. Data from a prospective multicenter cohort study of patients with moderate and severe trauma (New Injury Severity Score > 9) of all ages discharged alive from two regional trauma centers in 2020 were used. Needs were estimated using the Needs and Provision Complexity Scale. Overall, 46% of patients had unmet needs at 12 months post-injury, particularly related to the provision of rehabilitation services, specialist follow-ups, and social and family support. The probability of unmet needs was associated with age, pre-injury comorbidities, and impaired functioning. Our findings support strategies targeting younger patients, those with pre-injury comorbidities, and those with higher levels of disability and provide a starting point for the development of standardized rehabilitation needs assessment and guidelines following injury.

Validity of the Norwegian Version of the Needs and Provision Complexity Scale (NPCS) in Patients with Traumatic Brain Injury and Atraumatic Subarachnoid Hemorrhage.

There is a lack of validated measures in Scandinavian languages to track healthcare service needs and delivery for patients with neurological disabilities. The aim of the present study was to validate the Norwegian version of the clinician and patient Needs and Provision Complexity Scale (NPCS) Needs and Gets. Data on the NPCS from 60 adult patients with traumatic brain injury or atraumatic subarachnoid hemorrhage and symptoms lasting >5 months were assessed for inter-rater/test-retest reliability and agreement, as well as concurrent validity with the Neurological Impairment Scale (NIS), the Functional Independence Measure (FIM), and the Community Integration Questionnaire (CIQ). The clinician NPCS showed good-excellent inter-rater reliability, and the patient NPCS demonstrated good-excellent test-retest reliability. Absolute agreement was moderate-excellent across all clinician and patient items. Concurrent validity was significant, with large correlations between clinician NPCS-Needs and the NIS and FIM total scores, and small-medium correlations between the clinician and patient NPCS-Gets and the NIS and FIM total scores. There were no significant correlations between the NPCS and the CIQ. The study findings support the use of the Norwegian version of the NPCS to assess met and unmet healthcare and support needs for Norwegian-speaking adults with neurological disabilities.

Associations between protective resources and family functioning after traumatic brain injury: A cross-sectional study using a structural equation modeling approach.

BACKGROUND: A strength-based approach in the rehabilitation after traumatic brain injury (TBI) is recommended for patients and their families. However, further exploration of the complexity of individual and family factors is needed. OBJECTIVE: To explore the associations between individual protective resources in patients and family members and the overall family functioning using a strength-based approach. METHODS: Secondary analysis of data collected at baseline in a randomized controlled trial. Structural equation modeling with two latent constructs and six observed variables was performed. Outcome measures included the Resilience Scale for Adults, the Mental Component Summary (SF-36), the General Self-Efficacy Scale, and the Family Adaptability and Cohesion Evaluation Scale-IV. RESULTS: Hundred and twenty-two participants (60 patients, 62 family members) with a mean age of 43 years were included at a median of 11 months post-injury. The final model demonstrated a strong covariance (coefficient = 0.61) between the latent Protective construct and Family functioning. Model-fit statistics indicated an acceptable fit to the data. CONCLUSION: Higher levels of protective resources (resilience, self-efficacy, and mental HRQL) were positively associated with family functioning. These resources should be further assessed in patients and their families, to identify factors that can be strengthened through TBI rehabilitation intervention.

Community Integration and Associated Factors 10 Years after Moderate-to-Severe Traumatic Brain Injury.

This study evaluated the impact of baseline injury characteristics and one-year functional level on the 10-year community integration outcomes for working-age patients with moderate-to-severe traumatic brain injury (TBI). Patients aged 16-55 and diagnosed with moderate-to-severe TBI within 24 h of injury were eligible for the study. Multivariable hierarchical linear regression was utilized to assess the impact of baseline characteristics and one-year functional measures on the mean Community Integration Questionnaire (CIQ) scores 10 years after injury. Of 133 original study participants, 97 survived 10 years, and 75 were available for this study. The mean total CIQ score changed positively from one to 10 years post-injury, from 18.7 (±5.5) to 19.8 (±4.8) (p = 0.04). The results suggested that age (ß = -0.260, p = 0.013), FIM-Cognitive subscale (ß = 0.608, p = 0.002), and the bodily pain subscale (BP) (ß = 0.277, p = 0.017) of the SF-36 were significantly associated with the mean CIQ scores. In conclusion, this study demonstrated improved community integration from one to 10 years in a sample of working-age patients with moderate-to-severe TBI. The findings also showed that age, cognitive function, and bodily pain were significant predictors of long-term community integration, suggesting post-acute rehabilitation should focus on factors related to long-term risk and protective factors to improve long-term outcomes.

Unmet Rehabilitation Needs after Traumatic Brain Injury across Europe: Results from the CENTER-TBI Study.

This study aims to assess rehabilitation needs and provision of rehabilitation services for individuals with moderate-to-severe disability and investigate factors influencing the probability of receiving rehabilitation within six months after traumatic brain injury (TBI). Overall, the analyses included 1206 individuals enrolled in the CENTER-TBI study with severe-to-moderate disability. Impairments in five outcome domains (daily life activities, physical, cognition, speech/language, and psychological) and the use of respective rehabilitation services (occupational therapy, physiotherapy, cognitive and speech therapies, and psychological counselling) were recorded. Sociodemographic and injury-related factors were used to investigate the probability of receiving rehabilitation. Physiotherapy was the most frequently provided rehabilitation service, followed by speech and occupational therapy. Psychological counselling was the least frequently accessed service. The probability of receiving a rehabilitative intervention increased for individuals with greater brain injury severity (odds ratio (OR) 1.75, CI 95%: 1.27-2.42), physical (OR 1.92, CI 95%: 1.21-3.05) and cognitive problems (OR 4.00, CI 95%: 2.34-6.83) but decreased for individuals reporting psychological problems (OR 0.57, CI 95%: 1.21-3.05). The study results emphasize the need for more extensive prescription of rehabilitation services for individuals with disability. Moreover, targeted rehabilitation programs, which aim to improve outcomes, should specifically involve psychological services to meet the needs of individuals recovering from TBI.

Health-Related Quality of Life Trajectories across 10 Years after Moderate to Severe Traumatic Brain Injury in Norway.

Traumatic brain injury (TBI) has a long-lasting impact on participation and health-related quality of life (HRQL). We aimed to describe the physical and mental health trajectories and to identify their predictors across the first 10 years after TBI. A prospective longitudinal cohort of 97 individuals with moderate to severe TBI (age 16-55 years) in Norway were followed up at 1, 2, 5, and 10 years post-injury. Their socio-demographic and injury characteristics were recorded at baseline; their responses to the 36-Item Short Form Health Survey (SF-36) were collected at each follow-up. The Physical (PCS) and Mental Component Summary (MCS) scores were used as the outcome measures of physical and mental health. The predictors of the trajectories were described and examined using hierarchical linear modelling. The subscale scores showed a stable or increasing trend, but only the Role Physical and Role Emotional subscales showed clinically relevant positive changes from 1 to 10 years post-injury. Longer time, male gender, employment pre-injury, and shorter length of post-traumatic amnesia were significant predictors of better physical health trajectories; longer time, male gender, and employment pre-injury were significant predictors of better mental health trajectories. At-risk individuals may be targeted to receive rehabilitation interventions to improve their long-term quality of life outcomes.

Frequency of fatigue and its changes in the first 6 months after traumatic brain injury: results from the CENTER-TBI study.

BACKGROUND: Fatigue is one of the most commonly reported subjective symptoms following traumatic brain injury (TBI). The aims were to assess frequency of fatigue over the first 6 months after TBI, and examine whether fatigue changes could be predicted by demographic characteristics, injury severity and comorbidities. METHODS: Patients with acute TBI admitted to 65 trauma centers were enrolled in the study Collaborative European NeuroTrauma Effectiveness Research in TBI (CENTER-TBI). Subjective fatigue was measured by single item on the Rivermead Post-Concussion Symptoms Questionnaire (RPQ), administered at baseline, three and 6 months postinjury. Patients were categorized by clinical care pathway: admitted to an emergency room (ER), a ward (ADM) or an intensive care unit (ICU). Injury severity, preinjury somatic- and psychiatric conditions, depressive and sleep problems were registered at baseline. For prediction of fatigue changes, descriptive statistics and mixed effect logistic regression analysis are reported. RESULTS: Fatigue was experienced by 47% of patients at baseline, 48% at 3 months and 46% at 6 months. Patients admitted to ICU had a higher probability of experiencing fatigue than those in ER and ADM strata. Females and individuals with lower age, higher education, more severe intracranial injury, preinjury somatic and psychiatric conditions, sleep disturbance and feeling depressed postinjury had a higher probability of fatigue. CONCLUSION: A high and stable frequency of fatigue was found during the first 6 months after TBI. Specific socio-demographic factors, comorbidities and injury severity characteristics were predictors of fatigue in this study.

Long-term follow-up of use of therapy services for patients with moderate-to-severe traumatic brain injury.

OBJECTIVES: To examine the probabilities and baseline predictors of the use of physical therapy, occupational therapy and speech therapy over a period of 10 years after traumatic brain injury. DESIGN: Longitudinal prospective follow-up at 1, 2, 5 and 10 years after traumatic brain injury. PARTICIPANTS: A total of 97 patients with moderate-to-severe traumatic brain injury recruited from Oslo University Hospital, Norway, during acute hospital admission in 2005-2007. METHODS: Socio-demographics and injury characteristics were recorded at baseline. Use of physical therapy, occupational therapy and speech therapy were recorded at follow-ups. Hierarchical linear modelling was applied to examine service use probabilities across the 4 time-points. RESULTS: Service use decreased substantially over time, with physical therapy being the main service utilized at the 10-year follow-up (physical therapy 16%, occupational therapy 1%, speech therapy 3%). Use of services was related to severity of injury (CT head severity scores and post-traumatic amnesia), female sex, and pre-injury employment. In addition, in this sample, time since injury was associated with use of occupational therapy and speech therapy. CONCLUSION: This study presents a novel model for the long-term probability of use of physical therapy, occupational therapy and speech therapy following traumatic brain injury. The use of services was much lower than the expected problem profile of severe traumatic brain injuries, suggesting an insufficient long-term provision of traditional traumatic brain injury rehabilitation services.

Trajectories of self-reported competency up to 10 years following moderate-to-severe traumatic brain injury.

Objectives: To describe trajectories of self-reported functional competency up to 10 years following traumatic brain injury (TBI) and identify their predictors from baseline socio-demographic and injury severity characteristics.Design and methods: Data from 94 participants from a longitudinal cohort of patients with moderate-to-severe TBI were analyzed. Socio-demographic and injury severity data were recorded at baseline. Participants completed the Patient Competency Rating Scale (PCRS) at 1, 2, 5, and 10 years. Hierarchical linear modeling was used to examine PCRS trajectories over time and assess baseline predictors.Results: There was no significant change in average PCRS scores across the follow-up time points in the full sample. Emotional and cognitive competencies had the lowest mean scores. Gender, employment, and the interaction term between gender and time were significant predictors of PCRS trajectories. Females and those who were unemployed at the time of injury showed lower trajectories of self-reported competency.Conclusion: Self-reported competency remained stable from one-year post-injury for men only. Lower mean scores in the domains of emotional and cognitive competencies suggest a need for continued rehabilitation focus in the chronic phase after TBI. Special attention to women and individuals who are unemployed at the time of injury may be warranted.

Employment Probability Trajectories Up To 10 Years After Moderate-To-Severe Traumatic Brain Injury.

Aims: To examine trajectories of employment probability up to 10 years following moderate-to-severe traumatic brain injury (TBI) and identify significant predictors from baseline socio-demographic and injury characteristics. Methods: A longitudinal observational study followed 97 individuals with moderate-to-severe TBI for their employment status up to 10 years post injury. Participants were enrolled at the Trauma Referral Center in South-Eastern Norway between 2005 and 2007. Socio-demographic and injury characteristics were recorded at baseline. Employment outcomes were assessed at 1, 2, 5, and 10 years. Hierarchical linear modeling (HLM) was used to examine employment status over time and assess the predictors of time, gender, age, relationship status, education, employment pre-injury, occupation, cause of injury, acute Glasgow Coma Scale (GCS) score, duration of post-traumatic amnesia (PTA), CT findings, and injury severity score, as well as the interaction terms between significant predictors and time. Results: The linear trajectory of employment probabilities for the full sample remained at ~50% across 1, 2, 5, and 10-years post-injury. Gender (p = 0.016), relationship status (p = 0.002), employment (p < 0.001) and occupational status at injury (p = 0.005), and GCS (p = 0.006) yielded statistically significant effects on employment probability trajectories. Male gender, those in a partnered relationship at the time of injury, individuals who had been employed at the time of injury, those in a white-collar profession, and participants with a higher acute GCS score had significantly higher overall employment probability trajectories across the four time points. The time*gender interaction term was statistically significant (p = 0.002), suggesting that employment probabilities remained fairly stable over time for men, but showed a downward trend for women. The time*employment at injury interaction term was statistically significant (p = 0.003), suggesting that employment probabilities were fairly level over time for those who were employed at injury, but showed an upward trend over time for those who had been unemployed at injury. Conclusion: Overall employment probability trajectories remained relatively stable between 1 and 10 years. Baseline socio-demographic and injury characteristics were predictive of employment trajectories. Regular follow-up is recommended for patients at risk of long-term unemployment.

Cognitive Performance After a One-Year Multidisciplinary Intensive Rehabilitation Program for Huntington's Disease: An Observational Study.

BACKGROUND: Studies of physical therapy and multidisciplinary rehabilitation programs for Huntington's disease (HD) have shown improvements in gait function, balance, and physical quality of life. There is a gap in the literature on effects of cognitive interventions and the potential to improve cognitive performance. OBJECTIVE: To assess changes in cognitive performance among patients with early to middle stage HD as secondary analyses from a one-year multidisciplinary rehabilitation program. The program included cognitive stimulation as a non-specific cognitive intervention in addition to physical interventions. METHODS: A one-year rehabilitation program that included comprehensive neuropsychological assessments was completed by 31 out 37 participants with early to middle stages of HD. Socio-demographic and clinical information was recorded. A battery of neuropsychological tests was used to measure cognitive functions before and after the intervention. Descriptive statistics was used for sample characteristics. Paired sample t-tests and nonparametric Wilcoxon Signed ranked tests were used to compare cognitive measures at both time points. RESULTS: Scores on the Symbol Digit Modalities Test (SDMT) were significantly lower post intervention. There were no significant differences in all other measures. Scores on the Stroop color naming and California Verbal Learning Test-II (CVLT-II) long-term delayed recall tasks showed tendencies towards lower scores post intervention. CONCLUSIONS: An intensive multidisciplinary rehabilitation program for patients with HD was generally well tolerated and feasible, with no indication of negative effects on cognition. Neuropsychological measures overall remained stable following an intensive multidisciplinary rehabilitation program, however continued progression of cognitive impairment was evident on the SDMT, suggesting that disease progression is not halted. Randomized controlled trials are needed to verify these findings.

Disability and quality of life 20 years after traumatic brain injury.

OBJECTIVES: The study describes functional outcomes and health-related quality of life (HRQL) in patients with traumatic brain injury (TBI) 20 years postinjury. MATERIALS AND METHODS: Forty-four survivors who acquired moderate and severe TBI during 1995-1996 were followed 10 and 20 years postinjury. Outcomes were Glasgow Outcome Scale Extended (GOSE), Community Integration Questionnaire (CIQ), and SF-36 questionnaire (SF-36). Multiple regressions were performed to examine the relationship between follow-up measurements, controlling for baseline demographics and injury severity. RESULTS: There were no significant differences in baseline age and civil status between moderate and severe TBI, but patients with severe injury had significantly lower employment rates (p = 0.05). Mean age at 20-years follow-up was 50.8 (SD 11.4) years, and 73% were males. Most patients showed good recovery (52%) or moderate disability (43%). Disability levels remained stable between and within severity groups from 10 to 20 years. Community integration including social integration improved from 10 to 20 years (p = 0.01 and p = 0.005, respectively). HRQL remained stable, except for subscales Bodily Pain and Role Emotional (p = 0.02 and p = 0.06). Depression at 10 years and females were associated with poorer mental health, while productive activity at 10 years indicated better physical and mental health at 20 years postinjury, respectively. CONCLUSIONS: Functional limitations persist even decades after moderate and severe TBI, with poorer prognosis for females and persons who were depressed at the 10-year follow-up. Development and evaluation of targeted long-term follow-up programs and access to rehabilitation services for these groups should be highlighted. Improved community integration despite stable functional limitations draws attention to long-term adaptation to adversity and illness.

Combined cognitive and vocational interventions after mild to moderate traumatic brain injury: study protocol for a randomized controlled trial.

BACKGROUND: A considerable proportion of patients with mild to moderate traumatic brain injury (TBI) experience long-lasting somatic, cognitive, and emotional symptoms that may hamper their capacity to return to work (RTW). Although several studies have described medical, psychological, and work-related factors that predict RTW after TBI, well-controlled intervention studies regarding RTW are scarce. Furthermore, there has traditionally been weak collaboration among health-related rehabilitation services, the labor and welfare sector, and workplaces. METHODS/DESIGN: This study protocol describes an innovative randomized controlled trial in which we will explore the effect of combining manualized cognitive rehabilitation (Compensatory Cognitive Training [CCT]) and supported employment (SE) on RTW and related outcomes for patients with mild to moderate TBI in real-life competitive work settings. The study will be carried out in the southeastern region of Norway and thereby be performed within the Norwegian welfare system. Patients aged 18-60 years with mild to moderate TBI who are employed in a minimum 50% position at the time of injury and sick-listed 50% or more for postconcussive symptoms 2 months postinjury will be included in the study. A comprehensive assessment of neurocognitive function, self-reported symptoms, emotional distress, coping style, and quality of life will be performed at baseline, immediately after CCT (3 months after inclusion), following the end of SE (6 months after inclusion), and 12 months following study inclusion. The primary outcome measures are the proportion of participants who have returned to work at 12-month follow-up and length of time until RTW, in addition to work stability as well as work productivity over the first year following the intervention. Secondary outcomes include changes in self-reported symptoms, emotional and cognitive function, and quality of life. Additionally, a qualitative RTW process evaluation focused on organizational challenges at the workplace will be performed. DISCUSSION: The proposed study will combine cognitive and vocational rehabilitation and explore the efficacy of increased cross-sectoral collaboration between specialized health care services and the labor and welfare system. If the intervention proves effective, the project will describe the cost-effectiveness and utility of the program and thereby provide important information for policy makers. In addition, knowledge about the RTW process for persons with TBI and their workplaces will be provided. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03092713 . Registered on 10 March 2017.

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

BACKGROUND: Huntington'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. METHODS: In 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. RESULTS: The 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 (ß value - 0.228; p = 0.018) whereas a better total functional capacity corresponded to higher HRQoL (ß value 0.564; p < 0.001). CONCLUSIONS: The study findings suggest that patients with HD do not receive healthcare services that could have a positive impact on their HRQoL.

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 (ß 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.

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

BACKGROUND: In 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. METHODS: Eighty-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. RESULTS: A 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). CONCLUSIONS: Needs 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.