Improvement of health-related quality of life after closure of spinal CSF leaks in patients with spontaneous intracranial hypotension.

OBJECTIVE: Spontaneous intracranial hypotension (SIH) is an important cause of orthostatic headaches caused by spinal CSF leaks. It has a strong negative impact on patients' socioeconomic status and health-related quality of life (HRQOL). This study aimed to analyze the impact of surgical and endovascular treatments on patients' HRQOL. METHODS: The authors conducted a prospective, observational cohort study that included all patients treated for SIH with microsurgery or embolization, depending on the type of CSF leak, at their institution between April 2022 and May 2023. Patients were asked to complete a specifically designed questionnaire, as well as the 15D HRQOL questionnaire, before and 3 months after treatment. RESULTS: A total of 21 patients (14 female; mean age 51.7 years) were treated in the study period. There were 12 (57%) type 1 leaks, 3 (14%) type 2, and 6 (29%) type 3. While 20 (95.2%) leaks were localized in the thoracic spine, only 1 (4.8%) was found in the lumbar spine. All patients completed the questionnaires. Fifteen (71.4%) patients underwent microsurgery and 6 (28.6%) endovascular embolization. The mean 15D score improved from 0.802 before to 0.889 after treatment (p = 0.013). Compared with an age- and sex-matched general population, HRQOL was significantly impaired in patients with SIH before treatment. After treatment, the authors found no significant difference in the overall HRQOL between patients and the healthy population. Mean headache intensity on a numeric rating scale improved from 8.1 before treatment to 2.3 after treatment (p = 0.003). Patients reported that SIH had a notable impact on their social and working life. CONCLUSIONS: SIH has a considerable negative impact on HRQOL. Microsurgery or embolization can dramatically improve HRQOL, subjective perception of health, and headache intensity. Therefore, surgical or endovascular treatment should be considered given the improvement observed in HRQOL for patients with SIH.

Quality of life and socioeconomic and educational status in patients with congenital hypothyroidism.

BACKGROUND: The aim of this study was to investigate the influence of primary congenital hypothyroidism (CH) on quality of life, level of education and socioeconomic status (SES). METHODS: Two independent study cohorts, a national and a regional, were collected from Finnish national registers and patient records. Data on social security benefits, SES, marital status, and education were collected from Statistics Finland. Health-related quality of life (HRQoL) was studied in the regional patient cohort with the standardized 15D and 16D instruments. RESULTS: There were no statistically significant differences in education level, marital status, or SES between CH patients (n = 40) and their matched controls at the age of 25 years. The mean 15D score was both statistically significantly and clinically importantly lower in CH patients (n = 29) than controls (0.904 vs. 0.953, p = 0.008). CH patients reported significantly lower scores across various dimensions of physical and mental HRQoL, including breathing, sleeping, speech, excretion, mental function, distress, and vitality. The mean 16D score was lower in CH patients compared to controls (0.917, vs. 0.947), but without statistical significance. CONCLUSION: SES of CH patients did not differ from matched controls. Thus, most CH patients integrate well into society, but their HRQoL is impaired. IMPACT: Most patients with primary congenital hypothyroidism integrate well into society. In the current study, their socioeconomic and marital status did not differ from matched controls at the age of 25 years. However, health-related quality of life measured using 15D instrument was impaired. Every fourth patient reported that congenital hypothyroidism influenced everyday life.

Health-related quality of life of young adult women with a history of premature adrenarche.

INTRODUCTION: Children with premature adrenarche (PA) have increased adrenal androgen concentrations and earlier pubertal development than their peers. Early sexual maturation and exposure to androgens have both been associated with an increased risk for neuropsychological adversities in adulthood. Such adversities would presumably influence the experienced health-related quality of life (HRQoL) of those affected. METHODS: A longitudinal case-control cohort study, in which 30 PA girls and 40 age-matched controls were followed from childhood to young adult age. The main outcome measure was the total 15D HRQoL score. In addition, we assessed specific dimensions of the questionnaire, the subjects' relationship statuses and living arrangements. RESULTS: There were no differences between the groups in the overall 15D scores (PA, 0.956 (0.052); control, 0.947 (0.055); p 0.482), or on any dimension of this instrument. CONCLUSION: The study suggests that a history of PA does not lead to impaired HRQoL in adult age.

Health-related quality of life after hip fracture: effects of a 12-month home-based exercise intervention-secondary analyses of an RCT.

PURPOSE: In this randomized controlled trial, we analyzed the effects of a 12-month home-based exercise intervention on the health-related quality of life (HRQoL) of patients with a hip fracture. METHODS: Participants (n = 121) aged ≥ 60 years, with a Mini-Mental State Examination (MMSE) score of ≥ 12 and an operated hip fracture, were placed into Exercise (n = 61) or Usual care (n = 60) groups. Physiotherapist-supervised, home-based training was given twice a week over 12 months. HRQoL was assessed using the 15D instrument at baseline and at 3, 6, and 12 months. The total 15D scores and dimension scores were analyzed and compared to national age- and sex-matched reference data. RESULTS: The participants' mean age was 81 years (SD 7), 75% were women, and 61% had a femoral neck fracture. The mean within-group change in total 15D score over 12 months was 0.023 (95% CI: -0.003 to 0.048) in the Usual care group, and 0.028 (CI: 0.003 to 0.054) in the Exercise group (between-group p = 0.76). We found a statistically significant change in total 15D score in the Exercise group, as well as in the dimension scores of mobility and usual activities in both groups. All 15D scores remained below the general population reference level. CONCLUSION: Exercise training for 12 months did not enhance the HRQoL of home-dwelling patients with hip fractures any more than usual care. In addition, HRQoL remained below the population level in both groups.

Dyspnea Associates With a Widely Impaired Quality of Life in Idiopathic Pulmonary Fibrosis Patients: A Longitudinal Study Using 15D.

Background: Research on health-related quality of life (HRQoL) is crucial for developing comprehensive palliative care in idiopathic pulmonary fibrosis (IPF). Objectives: To study IPF patients' HRQoL compared with general population and its association with dyspnea in a longitudinal follow-up. Design: Assessment of IPF patients' HRQoL by a generic tool. Comparison of baseline data with the general population and a 30-month follow-up with 6 months intervals. Setting/Subjects: In total, 246 IPF patients were recruited from the Finnish nationwide real-life study, FinnishIPF. Measurements: Modified Medical Research Council (MMRC) dyspnea scale for dyspnea and the generic HRQoL tool 15D for the total and dimensional HRQoL were used. Results: At baseline, the mean 15D total score was lower (0.786, standard deviation [SD] 0.116) in IPF patients than in the general population (0.871, SD 0.043) (p < 0.001) and among the IPF patients with MMRC ≥2 compared with those with MMRC <2 (p < 0.001). In patients with MMRC ≥2, significant impairment compared with general population existed in 11 dimensions of HRQoL, such as breathing, usual activities, and sexual activity, whereas this was true in only 4 dimensions in MMRC <2 category. Mental function was not impaired in either group. During the follow-up, 15D total score decreased in both MMRC categories (p < 0.001) but stayed constantly worse in the MMRC ≥2 group. Seven and two dimensions of HRQoL significantly declined in the categories of MMRC <2 and MMRC ≥2, respectively. Conclusions: Patients with IPF, especially if dyspnea limits everyday life, suffer from widely impaired HRQoL, although self-assessed mental capability is preserved. Integrated palliative care is supported to face the multiple needs of IPF patients.

Prenatal wellbeing of mothers, their partners, and couples: a cross-sectional descriptive study.

BACKGROUND: Prenatal posttraumatic stress symptoms (PTSS), fear of childbirth (FOC), and depressive symptoms have been related to various negative effects during pregnancy, childbirth, and in the postnatal period. This study evaluates the prevalence of PTSS, FOC, depressive symptoms, and health-related quality of life (HRQoL) among pregnant women, their partners, and as couples. METHODS: In a cohort of 3853 volunteered, unselected women at the mean of 17th weeks of pregnancy with 3020 partners, PTSS was evaluated by Impact of Event Scale (IES), FOC by Wijma Delivery Expectancy Questionnaire (W-DEQ-A), depressive symptoms by Edinburgh Postnatal Depression Scale (EPDS), and HRQoL by 15D instrument. RESULTS: PTSS (IES score ≥ 33) was identified among 20.2% of the women, 13.4% of the partners, and 3.4% of the couples. Altogether, 5.9% of the women, but only 0.3% of the partners, and 0.04% of the couples experienced symptoms suggestive of phobic FOC (W-DEQ A ≥ 100). Respectively, 7.6% of the women, 1.8% of the partners, and 0.4% of the couples reported depressive symptoms (EPDS ≥ 13). Nulliparous women and partners without previous children experienced FOC more often than those with previous children, but there was no difference in PTSS, depressive symptoms, or HRQoL. Women's mean 15D score was lower than partners' and that of age- and gender-standardized general population, while partners' mean 15D score was higher than that of age- and gender-standardized general population. Women whose partners reported PTSS, phobic FOC, or depressive symptoms, often had the same symptoms (22.3%, 14.3%, and 20.4%, respectively). CONCLUSIONS: PTSS were common in both women and partners, as well as in couples. FOC and depressive symptoms were common in women but uncommon in partners, thus they rarely occurred simultaneously in couples. However, special attention should be paid to a pregnant woman whose partner experiences any of these symptoms.

Health care costs and changes in subjective health-related quality of life among Finnish adolescents referred to secondary psychiatric out-patient services: a one-year follow-up study.

Background: There has been growing interest in economic evidence regarding treatment of mental disorders. Objective: The purpose of this one-year follow-up study was to evaluate the secondary health care costs and changes in health-related quality of life (HRQoL) in three common adolescent psychiatric disorder groups. Further, HRQoL of patients was compared to that of population controls. Methods: Twelve- to fourteen-year-old adolescents with behavioral and emotional disorders (n = 37), mood disorders (n = 35), and anxiety disorders (n = 34), completed the 16D HRQoL questionnaire when they entered the adolescent psychiatric outpatient clinics (baseline) and at follow-up. The direct secondary health care costs were calculated using a clinical patient administration system. Population controls included 373 same-aged pupils from randomly selected 13 comprehensive schools. Results: The direct secondary health care costs did not differ significantly between the three patient groups. However, in adolescents with mood disorders, this investment generated a significant and clinically important improvement in HRQoL, which was not observed in the other two patient groups. Conclusions: The costs of health care alone do not necessarily reflect its quality.

Health-related quality of life-based definition of remission from depression among primary care patients.

Background: Depression undermines health-related quality of life (HRQoL). Remission is the central aim of all treatments for depression, but the degree of remission necessary for depressive patients' HRQoL to correspond to the normal range of the general population remains unknown. Methods: The Vantaa Primary Care Depression Study prospectively followed-up a screening-based cohort of depressive primary care patients for 5 years. The Structured Clinical Interview for DSM-IV Axis I Disorders (SCID-I) was used to diagnose major depressive disorder. HRQoL was measured by the generic 15D instrument at baseline and at 5 years (N = 106, 77% of baseline patients), and compared with the 15D results of an age-standardized general population sample from the Finnish Health 2011 Survey (N = 4,157). Receiver operating characteristic analyses determined the optimal Hamilton Depression Rating Scale (HAMD), Beck Depression Inventory (BDI), and Beck Anxiety Inventory (BAI) cut-offs for remission, using the 15D score as the construct validator. Remission was defined as the score at which HRQoL reached the general population range (minimum mean - 1 SD). As age may influence HRQoL, patients older and younger than the median 52 years were investigated separately. Results: For HAMD, the optimal cut-off point score was 8.5, for BDI 10.5, and for BAI 11.5. The differences between the findings of the younger and older patients were small. Limitations: Cross-sectional analysis, small number of patients in the cohort. Conclusion: Depressive primary care patients' HRQoL reaches the normal variation range of the general population when their depression and anxiety scores reach the conventional clinical cut-offs for remission.

Translation, Cultural Adaptation, and Reliability of the 15D Portuguese Version: A Generic Health-Related Quality of Life (HRQoL) Instrument.

(1) Background: Purpose: The assessment of quality of life is essential to the human condition and can be measured through questionnaires. This study aims to translate and culturally adapt the 15D questionnaire to assess the population's quality of life, as well as explore its relative reliability and internal consistency; (2) Methods: The translation and cultural adaptation of the 15D questionnaire was carried out independently, considering two translations. The synthesis version was applied to eight subjects, distributed by gender. Cognitive interviews were conducted to observe clarity, acceptability, and familiarity with the version of the questionnaire. The final version of the questionnaire, in Portuguese, was again translated into the official language by two translators who had never had contact with the questionnaire. To assess the test-retest reliability and internal consistency of the 15D questionnaire, 43 participants were interviewed; (3) Results: Participants indicated that they had some doubts about dimensions, breathing, and discomfort and symptoms; however, as there were no suggestions for change, the questionnaire had no changes. Items were clear and understandable. Internal consistency was observed using Cronbach's alpha, with values between 0.76 and 0.98. The test-retest reliability values were between 0.77 and 0.97; and (4) Conclusions: The Portuguese version of the 15D questionnaire was proved to be equivalent to the English version and to be reliable for the Portuguese population. This instrument is easy to access and apply.

Outcomes at a Mean of 13 Years After Proximal Humeral Fracture During Adolescence.

BACKGROUND: The long-term outcomes of a proximal humeral fracture during adolescence are not well known. We investigated the course of primary treatment for these injuries and the long-term outcomes in adulthood, comparing the outcomes with those from age-matched controls. We also compared outcomes after operative and nonoperative treatment via propensity score matching. METHODS: We included children who sustained a proximal humeral fracture between the ages of 10.0 and 16.0 years and underwent treatment between 1995 and 2005. Data from primary treatment episodes were extracted from patient files. The patients were invited to a follow-up visit with outcome assessment and radiographs or to a telephone interview if unable to attend. The primary outcome was the Disabilities of the Arm, Shoulder and Hand (DASH) questionnaire. The secondary outcomes were the Simple Shoulder Test (SST), pain at rest and with strenuous use, shoulder range of motion, strength measurements, health-related quality of life (15D), and harms. Participant results were compared with the normal values of an age-matched population. The effect of operative treatment was assessed using propensity score matching and the average treatment effect was calculated. RESULTS: This study included 209 patients (210 fractures). The mean follow-up (and standard deviation) was 13.1 ± 3.2 years. Outcome data were obtained from 152 participants (153 fractures); 78 participants attended the follow-up visit. The primary treatment episodes were uneventful. The mean scores were 2.5 (95% confidence interval [CI], 1.8 to 3.3 [range, 0 to 13]) for the DASH and 11.7 (95% CI, 11.5 to 11.8 [range, 8 to 12]) for the SST. Other outcomes were similarly good. There were no differences in function compared with the normal population values. Propensity matching showed no treatment effect for operative treatment compared with nonoperative treatment. CONCLUSIONS: Proximal humeral fractures of adolescents heal well and rarely result in impairments whether treated operatively or nonoperatively. LEVEL OF EVIDENCE: Prognostic Level III. See Instructions for Authors for a complete description of levels of evidence.

Health-related quality of life and anxiety levels among patients under surveillance for intraductal papillary mucinous neoplasm.

BACKGROUND: Because of the premalignant nature of intraductal papillary mucinous neoplasms (IPMNs), patients should undergo surveillance as long as they remain fit for surgery. This surveillance, with imaging and laboratory tests every 6 to 12 months, is expensive and may psychologically burden patients. This study aimed to determine the effects of IPMN surveillance on patients´ health-related quality of life (HRQoL) and anxiety levels. METHODS: We included a random subgroup of all IPMN patients undergoing a follow-up check-up at Helsinki University Hospital (HUH) between August 2017 and November 2018. Patients were asked to complete the 15D HRQoL and state-trait anxiety inventory (STAI) questionnaires just before and three months after an IPMN control. RESULTS: Among 899 patients in IPMN follow-up, 232 participated. The 15D HRQoL results showed differences in some IPMN patients' 15 analyzed dimensions compared to a sex- and age-standardized general population cohort, but the clinical relevance of these differences appear doubtful. We detected no significant difference in the anxiety levels determined using the STAI questionnaires before or three months after the IPMN control. CONCLUSION: Surveillance should be less harmful than the risk of disease. Among our patients, the recommended IPMN follow-up carried minimal negative impact on patients' HRQoL or anxiety levels. This result is important, because the number of patients under IPMN surveillance is rapidly increasing and the cancer risk among the majority of these patients remains small. TRIAL REGISTRATION: The Surgical Ethics Committee of Helsinki University Hospital approved this study (Dnro HUS 475/2017) and it was registered at ClinicalTrials.gov (NCT03131076) before patient enrollment began.

Immediate sequential bilateral cataract surgery: a 13-year real-life report of 56 700 cataract operations.

BACKGROUND/AIMS: To assess the frequency of immediate sequential bilateral cataract surgery (ISBCS) and endophthalmitis during 13-year period in Tays Eye Centre, Tampere University Hospital, Tampere, Finland. METHODS: All cataract surgeries performed between 1 January 2008 and 31 December 2020, and all endophthalmitis cases during the same period were searched from electronic patient records. Numbers and frequencies of ISBCS, and complications, including endophthalmitis and vitreous loss, were recorded and compared with unilateral operations. RESULTS: The study included 56 700 cataract surgeries in 34 797 patients of whom 39% (n=13 445) had ISBCS. The median age of the patients was 75 (IQR 68-80, range 0.08-99) years at the time of surgery. The proportion of ISBCS patients increased from 4.2% in 2008 to 46% in 2020. Vitreous loss occurred in 480 (0.9%) of cataract surgeries. There were no postoperative endophthalmitis after cataract surgery (n=0) during the 13-year period. CONCLUSION: The proportion of patients undergoing ISBCS increased from 4.2% in 2008 to 46% in 2020. No endophthalmitis were found to be associated with ISBCS.

Health-related Quality of Life of Patients Treated With Different Fractionation Schedules for Early Prostate Cancer Compared to the Age-standardized General Male Population.

BACKGROUND: The effects of radiotherapy (RT) patients' health-related quality of life (HRQoL) are usually compared to those of other treatment modalities instead of HRQoL of the general population in oncological studies. We examined HRQoL of patients with an early prostate cancer (PC) not receiving hormonal treatment up to 3 years after RT using the 15D instrument and the FACT-P questionnaire. METHODS: The 15D results were compared to those in the age-standardized general male population (N = 952) using an independent-sample t test. The study population (N = 73) received RT either with 78/2 Gy, 60/3 Gy or 36.25/7.25 Gy fractionation. RESULTS: No significant differences in the mean total HRQoL scores were found between the RT groups and the general male population at any time point. Patients with PC had more depression (P = .015) and distress (P = .029) than the general male population before the treatment and depression up to 3 months after treatment (P = .019), which did not persist at 3 years. The sexual activity dimension had declined by the end of treatment, and this decline persisted 3 years later (P = .033). Excretion functions were worse compared to those in peers at the end of treatment (P < .001) but no longer at 3 months and later after RT. Regarding the FACT-P, HRQoL remained good at 3 years after RT in all the treatment groups and there were no significant differences between the different RT groups at this time point. CONCLUSION: This study demonstrated that patients treated with RT for early PC had similar HRQoL compared to the age-standardized general male population at 3 years after treatment.

Health-related quality of life in boys with constitutional delay of growth and puberty.

Introduction: Constitutional delay of growth and puberty (CDGP) is the most common reason for delayed puberty in healthy male adolescents. The main indication for medical treatment for this condition is psychosocial burden. However, to the best of our knowledge, no previous study has addressed the impact of puberty-promoting treatment on health-related quality of life (HRQoL) among boys with CDGP. Methods: We investigated HRQoL in 22 boys with CDGP, who participated in a randomized controlled trial in four Finnish pediatric endocrinology outpatient clinics between 2013 and 2017. The boys were randomized to receive either aromatase inhibitor letrozole (2.5mg/day; n=11) or intramuscular testosterone (1mg/kg/every 4 weeks; n=11) for 6 months and followed up to 12 months. HRQoL was assessed with a generic self-assessment 16D© instrument developed and validated for adolescents aged 12 to 15 years. The 16D includes 16 dimensions (vitality, sight, breathing, distress, hearing, sleeping, eating, discomfort and symptoms, speech, physical appearance, school and hobbies, mobility, friends, mental function, excretion and depression). The results were compared with an age-matched reference population that included 163 boys from the Finnish capital-city area. The study protocol is registered to ClinicalTrials.gov (registration number: NCT01797718). Results: At baseline, the mean 16D score of the CDGP boys was similar to the age-matched reference population (0.95 vs 0.96, p=0.838). However, the physical appearance score (satisfaction with general appearance, height and weight) was significantly lower in the CDGP boys (0.75 vs 0.92, p=0.004) than their peers. Twelve months after treatment, Appearance had improved significantly (0.75 vs 0.87, p=0.004) and no HRQoL dimension was inferior compared to the age-matched reference population. Discussion: In terms of HRQoL, the main impact of delayed puberty was dissatisfaction with physical appearance. Puberty promoting therapy was associated with a positive change in perceived appearance, with no clear difference between low-dose testosterone and letrozole treatments.

Clinical manifestations and comorbidities of pemphigus: a retrospective case-control study in southern Finland

Background: Pemphigus is associated with several autoimmune, dermatological, and psychiatric diseases. Previous studies have reported an increasing incidence of pemphigus in Finland, particularly pemphigus foliaceus and erythematosus. Objectives: The aim of this study was to determine the clinical presentation and associated comorbidities in pemphigus patients. Materials & Methods: We retrospectively assessed 66 pemphigus patients in Helsinki University Hospital and, with an age-standardised control group, performed a comparison of the studied comorbidities. Results: The patients displayed a 0.8 female:male distribution and a mean age of 57.4 years. Pemphigus vulgaris (41%), foliaceus (30%), and erythematosus (15%) were the most common subtypes. Hypertension (30%) and dyslipidaemia (21%) were the most prevalent comorbidities. We found a statistically significant association between pemphigus and a past history of, or concurrent malignancies and atopic dermatitis (p = 0.002 and p = 0.028, respectively). No significant difference was observed in the prevalence of cardiovascular disease, asthma, chronic obstructive lung disease, type I or II diabetes mellitus, inflammatory bowel disease, depression, or anxiety. Erosions (65%), bullae (59%), and crusted lesions (55%) were observed in most patients. Half of the patients experienced pruritus before or at diagnosis. Pruritus was associated with pemphigus without mucosal involvement (p = 0.01). Conclusion: We found a significant association between pemphigus and atopic dermatitis and a history of malignancy. The clinical picture frequently included pruritus. These results support the findings of some recent studies of pruritus occurring more frequently in patients with pemphigus foliaceus and cutaneous pemphigus vulgaris.

Resilience, pain, and health-related quality of life in gynecological patients undergoing surgery for benign and malignant conditions: a 12-month follow-up study.

BACKGROUND: Gynecological surgery has many impacts on women's physical and mental health, and efforts to improve recovery from surgery are constantly under evaluation. Resilience is an ability to overcome stressors and adversities, such as traumas and surgeries. This study aimed to explore patients' resilience and psychological symptoms in relation to recovery, health-related quality of life (HRQoL), and pain one year after gynecological surgery. METHODS: In a prospective cohort study, we enrolled consecutive elective gynecologic surgery patients who completed questionnaires before and at one year after surgery: the Resilience Scale-25, the 15D instrument of HRQoL (15D), the Life Satisfaction Scale-4, and the Hospital Anxiety and Depression Scale. Their mean 15D scores were compared to those of an age-matched sample of women from the general Finnish population (n = 2743). RESULTS: We enrolled 271 women who underwent gynecological surgery due to benign (n = 190) and malignant (n = 81) diagnoses. Resilience was equally high in women with benign and malignant diagnoses at both time points. Higher resilience associated with less pain, analgesic use, and better pain relief from the use of pain medication at 12 months after surgery. Pain intensity was similar in the two groups, but patients with benign diseases had less pain at 12 months than before surgery. Before surgery, patients' HRQoL was worse than that of the general population, but at 12 months the mean HRQoL of patients with benign diseases had improved to the same level as that in the general population but had decreased further in patients with malignant diseases. Anxiety was higher and life satisfaction was lower in patients with malignant diseases before surgery. At 12 months, anxiety had decreased in both groups, and life satisfaction had increased in patients with malignant diseases. Depression was similarly low in both groups and time points. CONCLUSIONS: Resilience correlated with less pain one year after surgery. After surgery, HRQoL improved in patients with benign diseases but deteriorated in patients with malignant diseases. Patients with low resilience should be identified during preoperative evaluation, and health care professionals should give these patients psychological support to enhance their resilience. Trial Registration ClinicalTrials.gov; registered October 29, 2019; identifier: NCT04142203; retrospectively registered.

Long-term health-related quality of life in patients with ruptured arteriovenous malformations treated in childhood.

OBJECTIVE: The aim of this study was to reveal the long-term health-related quality of life (HRQOL), educational level, and impact on occupation in 55 patients who experienced ruptured brain arteriovenous malformations (AVMs) that were treated during childhood. METHODS: In 2016, questionnaires including the 15D instrument were sent to all living patients older than 18 years (n = 432) in the Helsinki AVM database. The cohort was further specified to include only patients with ruptured AVMs who were younger than 20 years at the time of diagnosis (n = 55). Educational level was compared with the age-matched general population of Finland. The mean 15D scores were calculated for independent variables (Spetzler-Ponce classification, admission age, symptomatic epilepsy, and multiple bleeding episodes) and tested using the independent-samples t-test or ANCOVA. Linear regression was used to create a multivariate model. Bonferroni correction was used with multiple comparisons. RESULTS: The mean follow-up time from diagnosis to survey was 24.2 (SD 14.7) years. The difference in the mean 15D scores between Spetzler-Ponce classes did not reach statistical significance. The youngest age group (< 10 years at the time of diagnosis) performed less well on the dimension of usual activities than the older patients. Symptomatic epilepsy significantly reduced the long-term HRQOL. Multiple hemorrhages significantly reduced the scores on three dimensions: mobility, speech, and sexual activity. In the regression model, symptomatic epilepsy was the only significant predictor for a lower 15D score. The educational level of the cohort was for the most part comparable to that of the general population in the same age group. AVM was the reason for early retirement in 11% of the patients, while lowered performance because of the AVM was reported by 37% of the patients. CONCLUSIONS: Patients with ruptured AVMs treated in childhood can live an independent and meaningful life, even in the case of the highest-grade lesions. Symptomatic epilepsy significantly reduced the long-term HRQOL, highlighting the need for continuing support for these patients.

Pulmonary rehabilitation in subterranean chambers combined with neuro-orthopedic activity-dependent plasticity therapy influences patients' quality of life - A preliminary study.

OBJECTIVE: The aim of the study was to evaluate if Neuro-orthopedic Activity-dependent Plasticity (N.A.P.) therapy combined with standard subterranean pulmonary rehabilitation (SPR) conducted in the salt mine influences the health-related quality of life (HRQoL) and chest mobility in patients with asthma or chronic upper respiratory tracts diseases. METHODS: 54 patients enrolled for the study completed a 3-week SPR. The 15D questionnaire, chest mobility and back scratch flexibility tests were conducted before and after SPR. In the study group (N = 23,16 women, 7 men) the N.A.P. therapy was added to SPR, while the control group (N = 31, 21 women and 10 men) completed the SPR program. RESULTS: After the SPR statistically significant improvements were observed on the 15D dimensions of breathing and vitality dimensions, in the chest mobility and back flexibility in both groups. With the baseline gender distribution, age, generic 15D score, chest mobility and back scratch adjusted, the change in the 15D score was 0.068 greater in the study group than in the control group. This difference is clinically important and statistically significant (p = 0.022). There was no statistically significant difference in the chest mobility and back scratch flexibility between the groups. CONCLUSIONS: Adding N.A.P. therapy techniques to the SPR program in the underground part of the 'Wieliczka' Salt Mine Health Resort results in a statistically significant and clinically important improvement in the subjects' HRQoL.

The impact of spontaneous intracranial hypotension on social life and health-related quality of life.

OBJECTIVE: Spontaneous intracranial hypotension (SIH), which is often caused by a spinal cerebrospinal fluid leak, is an important cause of disabling headaches. Many patients report devastating changes in their quality of life because of their symptoms. This study aimed to evaluate the impact of SIH on patients' social/ working life and health-related quality of life (HRQoL). METHODS: We included consecutive patients with proven SIH treated at our institution from January 2013 to May 2020. Patients were contacted and asked to complete the 15D questionnaire for the collection of HRQoL data and to provide additional information on their social life status. RESULTS: Of 112 patients, 79 (70.5%) returned the questionnaire and were included in the analysis. Of those, 69 were treated surgically (87.3%), and 10 were managed non-operatively (12.7%). Twenty-five (31.6%) patients reported a severe impact on their partnership, 32 (41.5%) reported a moderate or severe impact on their social life. Forty (54.8%) patients reported sick leave for more than 3 months. The mean 15D score was 0.890 (± 0.114) and significantly impaired compared to an age- and sex-matched general population (p = 0.001), despite treatment. Patients with residual SIH-symptoms (36, 45.6%) had significantly impaired HRQoL compared to those without any residual symptoms (41, 51.9%) (p < 0.001). CONCLUSION: SIH had a notable impact on the patients' social life and HRQoL. It caused long periods of incapacity for work, and is therefore, associated with high economic costs. Although all patients were appropriately treated, reduced HRQoL persisted after treatment, underlining the chronic character of this disease.

Patients with Hidradenitis Suppurativa Suffer from Low Health-Related Quality of Life as Measured by the Generic 15D Instrument.

Introduction: Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease associated with various comorbidities and diminished quality of life (QoL). Among dermatological conditions, HS is reported to most severely diminish QoL. This study aimed to analyse the health-related QoL (HRQoL) of patients with HS in more detail by using generic to disease-specific HRQoL questionnaires. Correlations between the HRQoL measures and HS disease severity measures were assessed. Methods: We analysed the HRQoL and clinical severity of patients with HS (N = 92) treated in 5 Finnish hospitals using HRQoL measurement tools most often used in dermatological clinics, as well as the generic 15D instrument (standardized and self-administered 15-dimensional measure of HRQoL). The disease severity was assessed using the Hurley stage, International Hidradenitis Suppurativa Severity Score System, and disease severity evaluation by the investigator. Results: The mean 15D score of HS patients was low and comparable with that of patients with cancers. No correlation was found between HS severity measures and 15D score, indicating that even mild HS has a high impact on HRQoL. Conclusions: Our findings strengthen the understanding about HS as a debilitating disease and even compared with non-dermatological conditions and highlight the need of comprehensive care of patients with HS.