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Purpose: Congenital aniridia is a serious eye disease characterized by absence of iris to various degrees. The aims of this study were to investigate health-related quality of life (HRQoL) in adults with aniridia and assess the relationships between HRQoL, psychological status, ocular health and obesity., Methods: Twenty-nine adults with congenital aniridia (48% male, aged 18-79 years) participated. HRQoL was measured with SF-36 and the EQ visual analogue scale (VAS). The physical (PCS) and mental (MCS) component summaries of the SF-36 were calculated with higher scores indicating better HRQoL. Symptoms of anxiety and depression were measured using the Hospital Anxiety and Depression Scale (HADS). Obesity was assessed with the Patient-Reported Outcomes in Obesity (PROS). Sociodemographic characteristics, genetic variants and ocular and medical health variables were also analysed., Results: The participants scored significantly lower in the general health domain of the SF-36 than the general population (65.2 vs. 75.3, p = 0.017). The EQ VAS score was also lower in the aniridia group (64.9 vs. 77.9, p = 0.021). Low PCS score was correlated with presence of ocular pain (p = 0.019), high HADS score (p = 0.017) and high PROS score (p = 0.009). Low MCS score was related to higher educational level (p = 0.038) and high HADS score (p < 0.001). High HADS and PROS scores were both related to low EQ VAS scores., Conclusion: Adults with congenital aniridia scored worse on certain measures of HRQoL than the general population. Poorer HRQoL was associated with increased symptoms of anxiety, depression and obesity and with presence of ocular pain., (© 2023 The Authors. Acta Ophthalmologica published by John Wiley & Sons Ltd on behalf of Acta Ophthalmologica Scandinavica Foundation.)

Importance: Traumatic brain injury (TBI) can cause long-lasting and heterogeneous difficulties that require an individually tailored approach to rehabilitation. However, high-quality studies of treatment options in the chronic phase of TBI are lacking., Objective: To evaluate the effect of a home-based, individualized, and goal-oriented rehabilitation intervention in the chronic phase of TBI., Design, Setting, and Participants: This study was an intention-to-treat parallel-group assessor-blinded randomized clinical trial with 1:1 randomization to an intervention or control group. Participants included adults in southeastern Norway who had sustained a TBI more than 2 years earlier, lived at home, and had ongoing TBI-related difficulties. A population-based sample of 555 individuals were invited, and 120 were included. Participants were assessed at baseline, 4 months, and 12 months after inclusion. Specialized rehabilitation therapists provided the intervention in patients' homes or via video conference and telephone. Data collection was conducted between June 5, 2018, and December 14, 2021., Interventions: The intervention group received an 8-session individually tailored and goal-oriented rehabilitation program over 4 months. The control group received usual care in their municipality., Main Outcomes and Measures: Preestablished primary outcomes were disease-specific health-related quality of life (HRQOL; measured by the Quality of Life After Brain Injury [QOLIBRI] overall scale) and social participation (measured by the Participation Assessment With Recombined Tools-Objective [PART-O] social subscale). Preestablished secondary outcomes included generic HRQOL (measured by the EuroQol 5-dimension 5-level [EQ-5D-5L] questionnaire), difficulty with TBI-related problem management (target outcomes; mean severity calculated across 3 main self-identified problem areas that were individually measured using a 4-point Likert scale), TBI symptoms (measured by the Rivermead Post Concussion Symptoms Questionnaire [RPQ]), psychological distress (depression and anxiety; measured by the Patient Health Questionnaire 9-item scale and the Generalized Anxiety Disorder 7-item scale [GAD-7], respectively), and functional competency (measured by the Patient Competency Rating Scale)., Results: Among 120 participants in the chronic phase of TBI, the median (IQR) age was 47.5 (31.0-55.8) years, and the median (IQR) time since injury was 4 (3-6) years; 85 (70.8%) were male. A total of 60 participants were randomized to the intervention group, and 60 were randomized to the control group. Between baseline and 12 months, no significant between-group effects were found for the primary outcomes of disease-specific HRQOL (QOLIBRI overall scale score: 2.82; 97.5% CI, -3.23 to 8.88; P = .30) or social participation (PART-O social subscale score: 0.12; 97.5% CI, -0.14 to 0.38; P = .29). At 12 months, the intervention group (n = 57) had significantly higher generic HRQOL (EQ-5D-5L score: 0.05; 95% CI, 0.002-0.10; P = .04) and fewer symptoms of TBI (RPQ total score: -3.54; 95% CI, -6.94 to -0.14; P = .04) and anxiety (GAD-7 score: -1.39; 95% CI, -2.60 to -0.19; P = .02) compared with the control group (n = 55). At 4 months only, the intervention group (n = 59) had significantly less difficulty managing TBI-related problems (target outcomes mean severity score: -0.46, 95% CI, -0.76 to -0.15; P = .003) compared with the control group (n = 59). No adverse events were reported., Conclusions and Relevance: In this study, no significant results were observed for the primary outcomes of disease-specific HRQOL or social participation. However, the intervention group reported improvements in secondary outcomes (generic HRQOL and symptoms of TBI and anxiety) that were maintained at 12-month follow-up. These findings suggest that rehabilitation interventions could help patients even in the chronic phase of TBI., Trial Registration: ClinicalTrials.gov Identifier: NCT03545594.

Background: Fabry disease (FD) is an X-linked lysosomal storage disorder characterized by multiorgan dysfunction. Since individuals with FD usually experience progressive clinical disease manifestations, their health-related quality of life (HRQOL) is expected to change over time. However, there is limited longitudinal research examining HRQOL outcomes in individuals with FD. We aimed to: assess longitudinal outcomes in HRQOL in adults with FD; examine the physical- and mental HRQOL trajectories at the initial registration (baseline), 3-5 year, and 7-13 year follow-ups; and evaluate the possible associations of age, sex and medical complications with the physical- and mental HRQOL trajectories., Methods: Forty-three individuals with FD (53% female) who were aged 18 to 81 years at baseline attended clinical follow-up visits between 2006 and 2020. Medical records were extracted retrospectively. Demographics and the 36-item Short-Form Health Survey (SF-36) were recorded at scheduled visits, except for the last data collection which was prospectively obtained in 2020. The physical (PCS) and mental (MCS) composite scores (SF-36) were chosen as outcome measures., Results: The eight SF-36 domain scores were stable over a span of 13 years, and only physical- and social functioning domains worsened clinically over this follow-up period. Mean baseline SF-36 domain scores were all significantly lower (decreased HRQOL) in the FD sample compared with Norwegian population norms. Two hierarchical linear models were run to examine whether demographics and medical complications (measured at the last clinical visit) predicted physical and mental HRQOL trajectories. Age above 47 years (p < 0.001), male sex (p = 0.027), small fibre neuropathy (p < 0.001), renal dysfunction (p < 0.001), and cerebrovascular events (p = 0.003) were associated with lower HRQOL over time. No significant interactions were found between the time of follow up and the abovementioned predictors of HRQOL., Conclusions: Overall HRQOL trajectories remained stable between baseline, 3-5 year, and 7-13 year follow-ups, with the majority of individuals reporting decreased physical and mental HRQOL. Medical complications in combination with older age and male sex are important predictors of lower HRQOL in FD. Awareness of this relationship is valuable both for health care providers and for patients. The findings provide indicators that can guide treatment decisions to improve physical and mental HRQOL outcomes., (© 2021. The Author(s).)

Introduction: Accumulating evidence shows that those having experienced psychological trauma have increased risk of complex health problems. In primary health care health-promoting services are offered to individuals with complex health problems, based on an individualized approach. Trauma focused approach in healthcare help individuals increase quality of life after psychological trauma. Trauma focused services are important to help improve quality of life after psychological trauma. To examine the experience of psychological trauma and health-related problems in individuals receiving health-promoting services., Method: Qualitative research based on the Vancouver School of phenomenology. Participants were ten, five male and five female, selected through health-promoting services. Two interviews were taken with each participant. The ACE questionnaire was used, as a screening tool for childhood psychological trauma, combined with interview-frame with open questions., Results: The results were divided into six main themes: Experience of trauma; Repeated trauma; Childhood neglect; Health-related problems in child- and adulthood; Psychiatric problems in child- and adulthood; Processing and trauma-focused approach. Participants had experienced conciderable trauma as well as complex health problems in child- and adulthood., Conclusions: It is of importance that healthcare professionals pay attention to psychological traumas in relation to complex health problems to provide support for recovery. Primary health care is the first place of contact within the health care system and therefore it is important that patients' experience of trauma is taken into account. It is key to identify the signs of lifetime trauma in relation to health problems and focus the care according to the individual needs of the patient.

Objectives: (1) To examine the impact of demographic and acute injury-related variables on functional recovery and life satisfaction after severe traumatic brain injury (sTBI) and (2) to test whether postinjury functioning, postconcussive symptoms, emotional state, and functional improvement are related to life satisfaction., Design: Prospective national multicenter study., Setting: Level 1 trauma centers in Norway., Participants: 163 adults with sTBI., Main Measures: Functional recovery between 3 and 12 months postinjury measured with Glasgow Outcome Scale Extended, Rivermead Postconcussion Symptoms Questionnaire, Hospital Anxiety and Depression Scale, and satisfaction with life situation., Results: 60% of cases experienced functional improvement from 3 to 12 months postinjury. Multivariate logistic regression analysis revealed that discharge to a rehabilitation department from acute care (odds ratio [OR] = 2.14; P < .05) and fewer days with artificial ventilation (OR = 1.04; P < .05) were significantly related to improvement. At 12 months postinjury, 85% were independent in daily activities. Most participants (63%) were satisfied with their life situation. Regression analysis revealed that older age (>65 years), low education, better functional outcome, and the absence of depressive and postconcussion symptoms were significant (P < .05) predictors of life satisfaction. Functional improvement was significantly associated with emotional state but not to life satisfaction., Conclusion: Following sTBI, approximately two-thirds of survivors improve between 3 and 12 months postinjury and are satisfied with their life. Direct discharge from acute care to specialized rehabilitation appears to increase functional recovery.

Objective: To describe the self-perceived health care needs of patients with moderate-to-severe traumatic brain injury (TBI) and to assess the impact of the functional level at 1 year after injury on patients' unmet needs at the 5-year follow-up., Design: A prospective follow-up study., Setting: Clinical research., Participants: A total of 93 patients participated in the 5-year follow-up., Methods: We registered demographic and injury-related data at the time of admission and the scores for the Disability Rating Scale, Glasgow Outcome Scale-Extended, and Short Form 36 subscales for physical functioning and mental health at 1 and 5 years. The patients' self-perceived health care needs and use of health care services at 5 years were the main outcome measurements., Results: At the 5-year follow-up, 70% of patients reported at least 1 perceived need. The self-perceived health care needs were met for 39% of the patients. The patients with unmet needs (n = 29 [31%]) reported frequent needs in emotional (65%), vocational (62%), and cognitive (58%) domains. These patients were significantly more likely to present a less severe disability on the Disability Rating Scale at the 1-year follow-up (odds ratio [OR] 0.11 [95% confidence interval {CI}, 0.02-0.7]; P = .02). Worse mental health at the 1-year follow-up and a younger age (16-29 years) largely predicted unmet needs at the 5-year follow-up (OR 3.28 [95% CI, 1.1-10.04], P = .04; and OR 4.93 [95% CI, 0.16-15.2], P = .005, respectively)., Conclusion: Gaps between self-perceived health care needs and health care services received at the 5-year follow-up were found. An important message to clinicians who provide health care services in the late TBI phase is that they should be aware of patients' long-term needs regarding cognitive and emotional difficulties. Of equal importance is an emphasis on long-term vocational rehabilitation services. To ensure the appropriateness of health care service delivery, health care services after TBI should be better targeted at less-severe TBI population as well., (Copyright © 2014 American Academy of Physical Medicine and Rehabilitation. Published by Elsevier Inc. All rights reserved.)

Aims: To describe health-related quality of life (HRQL) 2 years after moderate-to-severe traumatic brain injury (TBI) and to assess predictors of HRQL., Materials and Methods: A prospective cohort study of 91 patients, aged 16-55 years, admitted with moderate-to-severe TBI to a trauma referral centre between 2005 and 2007, with follow-up at 1 and 2 years. Mean age was 31.1 (SD = 11.3) years, and 77% were men. Injury severity was evaluated by the Glasgow Coma Scale (GCS), head CT scan (using a modified Marshall Classification), Injury Severity Score (ISS) and post-traumatic amnesia (PTA). The Functional Independence Measure (FIM), Community Integration Questionnaire (CIQ), Beck Depression Inventory (BDI) and Medical Outcomes 36-item Short Form Health Survey (SF-36) were administered at follow-up visits. The main outcome measures were the Physical Component Summary (PCS) and Mental Component Summary (MCS) of the SF-36., Results: HRQL appears to be relatively stable between 1 and 2 years after injury. In the multivariate linear regression, younger age (β = -0.20, P = 0.032), more severe TBI (β = 0.28, P = 0.016), more severe overall trauma (β = 0.22, P = 0.026), higher levels of community integration (β = 0.36, P = 0.019) and higher positive change in PCS scores from 1 to 2 years (β = 0.41, P < 0.001) predicted better self-reported physical health 2 years post-TBI. Lower scores for depression (β = -0.70, P < 0.001) and a higher positive change in MCS scores (β = 0.62, P < 0.001) predicted better self-reported mental health., Conclusions: Future interventions should focus on aspects related to HRQL that are more easily modified, such as physical functioning, home and social integration, productivity, and mental and emotional status., (© 2013 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Purpose: The purpose of this study was to assess disability and the physical and mental health status 1 year after traumatic brain injury (TBI), using the International Classification of Functioning, Disability and Health (ICF) as a conceptual model for understanding TBI disability., Methods: A prospective study of 85 patients with moderate-to-severe TBI (aged 16-55 years) due to injury occurring from May 2005 to May 2007 and hospitalised at the Trauma Referral Centre in Eastern Norway were included. The severity of structural brain damage and overall trauma were used as indices of body structure impairments. Activity limitations were measured by the Functional Independence Measure, and participation restrictions were assessed via the Community Integration Questionnaire. Physical and mental health dimensions as reported on the Medical Outcome Survey Short-Form were chosen as outcome measures., Results: Roughly one quarter of the patients reported disability requiring personal assistance. One third [corrected] had major problems with social integration, and 42% were not working. Nearly half of the patients reported poor physical health, and 37% reported poor mental health. Regression models, including demographics, impairments, activity limitations and participation restrictions, accounted for 50% of the variance in physical health and 35% of the variance in mental health. More severe impairments, fewer activity limitations and fewer participation restrictions equated to better overall health., Conclusions: The results demonstrated that a significant proportion of TBI survivors face substantial disability and impaired overall health 1 year after injury. To optimise health and well-being outcomes, clinicians need to ensure that health needs of patients with less severe TBI are identified and treated during the post-acute period.