scholarly journals Assessment of physical function, quality of life, and medication adherence in elderly patients with rheumatic diseases

2021 ◽  
Vol 48 (1) ◽  
Author(s):  
Tuba Erdem Sultanoğlu ◽  
Safinaz Ataoğlu ◽  
Burcu Avşar ◽  
Ömer Faruk Merkür
Keyword(s):  
Quality Of Life ◽  
Physical Function ◽  
Treatment Adherence ◽  
Rheumatic Diseases ◽  
Rating Scale ◽  
The Elderly ◽  
Comorbid Diseases ◽  
Group 2 ◽  
Group 1

Abstract Background The proportion of older people in the total population has increased in Turkey as well as worldwide. As life expectancy rises, the increasing prevalence of rheumatic diseases poses major problems in the elderly. Comorbid diseases and the aging-induced changes in the endogenous immune response and the pharmacokinetic properties of therapeutic agents may complicate the decision to use a particular drug and result in a different clinical picture and treatment response. We, therefore, aimed to investigate the characteristics of chronic inflammatory diseases, their impact on physical function and quality of life, the prevalence of comorbid diseases that may complicate treatment planning, and treatment adherence in patients aged 65 years or older. Results One hundred seventy-four patients were included and divided into two age groups: 18–64 years (group 1, n = 85) and 65 years or older (group 2, n = 89). The mean age of all recruited patients was 57.55 ± 16.98 years. Of 174, 99 (56.9%) were female and 75 (43.1%) were male. The mean duration of rheumatic disease was 7 ± 4.8 years and age at onset was 51.46 ± 14.78 years. Gender distribution differed significantly by age group (P = 0.024). The percentage of females in group 1 was 48.2% and 65.2% in group 2. The occupational status also differed significantly by age group (P < 0.001). 48.2% of group 1 were employed and 57.3% of group 2 were housewives. Marital status varied significantly by age (P < 0.001). The percentage of married was 74.1% in group 1 and the percentage of separated/divorced/widowed in group 2 was 28.1%. There was no difference between groups 1 and 2 in terms of place of residence (P = 0.459). The prevalence of comorbid diseases and the rate of use of medications for comorbid diseases (non-rheumatic treatments) were higher in elderly patients. The rate of use of disease-modifying anti-rheumatic drugs (DMARDs) was 30.3% and biological agents 61.8% in the elderly group (≥ 65 years) (group 2) (P < 0.001). There were positive correlations between, Health Assessment Questionnaire (HAQ), Bath Ankylosing Spondylitis Functional Index (BASFI) and Nottingham Health Profile (NHP) domains in both groups. There was also a significant negative correlation between Medication Adherence Rating Scale (MARS) and all dimensions. Conclusions Elderly and younger patients with rheumatic diseases have different demographic and clinical characteristics. Physical function and quality of life are more affected by rheumatic diseases and treatment adherence is poorer in the elderly. Our study found a positive correlation between physical function and quality of life in both age groups. The treatment adherence rating scale showed a negative correlation with physical function and quality of life scores, with individuals with poor treatment adherence having worse physical function and quality of life.

scholarly journals Neuropathic pain in knee osteoarthritis

2021 ◽  
Vol 61 (1) ◽  
Author(s):  
Uğur Güngör Demir ◽  
Ali Nail Demir ◽  
Naciye Füsun Toraman
Keyword(s):  
Quality Of Life ◽  
Body Composition ◽  
Neuropathic Pain ◽  
Knee Osteoarthritis ◽  
Physical Function ◽  
Body Mass ◽  
Symptom Duration ◽  
Group 2 ◽  
Group 1

Abstract Background This study aimed to investigate the relationship between the neuropathic pain in knee osteoarthritis with the body composition, anthropometric and postural features, physical function, and quality of life. Methods Patients with primary knee osteoarthritis, 50–70 years of age, were included in the study and divided into Group 1 with neuropathic pain and Group 2 with no neuropathic pain according to Douleur Neuropathique-4. The groups were compared in terms of demographic, clinical, radiological, laboratory findings and anthropometric measurements, body composition, physical function tests, osteoarthritis severity, quality of life, and posturography. Results 200 patients were included in the study. 98 (82.6% female) were in Group 1 and 102 (74.5% female) in Group 2. Age was higher in Group 1 compared to Group 2 [61 (50–70) and 57.5 (50–70), respectively, p = 0.03]. Symptom duration was also longer in Group 1 (5.21 ± 4.76 and 3.38 ± 3.58, p = 0.002). Body mass indices were 31.9 ± 5.6 and 30.1 ± 4.8 (p = 0.015). Kellgren–Lawrence class, Western Ontario and McMaster Osteoarthritis Index and Short Form-36 scores were more unfavorable in Group 1. Although fall risk was similar, stability and Fourier harmony indices were impaired in Group 1 compared to Group 2 especially when the visual and proprioceptive input was blocked. Conclusions Almost half of the patients with knee osteoarthritis had neuropathic pain which was associated with longer symptom duration and higher age, lower education, higher body mass index, more severe radilogical findings, worse pain perception, lower physical function and quality of life, and lower stability.

scholarly journals The Effect of Benign Joint Hypermobility on Pain, Physical Function and Quality of Life in Patients with Knee Osteoarthritis

2021 ◽  
Author(s):  
Serap Satis
Keyword(s):  
Quality Of Life ◽  
Body Mass Index ◽  
Knee Osteoarthritis ◽  
Physical Function ◽  
Body Mass ◽  
Sf 36 ◽  
The Difference ◽  
Group 2 ◽  
Group 1

Abstract Objective: This study investigated the effect of hypermobility on pain, joint stiffness, physical function, and quality of life in patients with knee osteoarthritis. Design: Sixty-four patients diagnosed with bilateral knee osteoarthritis were included; 42 patients in Group 1 were those with hypermobility and 22 patients in Group 2. There were 40 women and 2 men in Group 1, and 16 women and six men in Group 2 were those without hypermobility. The age, sex, and body mass index of all patients recorded. The WOMAC and SF-36 tests performed on the patients.Results: The average ages were 51.40±5.42 and 53.36±4.31, respectively, and there was no statistically significant difference. The body mass index was high in the hypermobility group, and the difference was statistically significant (p=0.028). Pain and stiffness were higher in the hypermobility group than in the non-hypermobility group in the WOMAC subgroups and total scores (p=0.030, p=0.002, p=0.047). The non-hypermobility group had better SF-36 social function and pain scale scores. The difference was statistically significant (p=0.016, p=0.004).Conclusions: Hypermobility aggravates the symptoms of knee osteoarthritis. Hypermobility evaluated in all patients diagnosed with knee OA. A more intense and long-term rehabilitation program should be determined for these patients to prevent injuries and improve proprioception.

Anxiety-depressive disorders and quality of life in patients with atrial fibrillation

2020 ◽  
Vol 41 (Supplement_2) ◽  
Author(s):  
T Demenko ◽  
G.A Chumakova
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Atrial Fibrillation ◽  
Correlation Analysis ◽  
Depressive Disorders ◽  
Life Assessment ◽  
Mild Depression ◽  
Group 2 ◽  
Group 1

Abstract Background Mental disorders in patients with cardiovascular disease have a significant impact on the course, the prognosis of the underlying disease and quality of life (QOL). Objective We aimed to examine the prevalence of anxiety and depressive disorders and their impact on the quality of life in patients with atrial fibrillation (AF). Materials and methods In 52 with permanent AF and 50 with paroxysmal AF patients, we administered the depression scale Tsung, the scale of situational anxiety (SA) and personal anxiety (PA) Spielberger-Hanin; QOL was assessed the SF-36 quality of life assessment scale. Correlation analysis using Spearman's rank correlation coefficient. Results The prevalence symptoms mild depression situational or neurotic genesis was 21.1% (12 patients) in Group 1 and 12.0% (6 patients) in Group 2 (p&gt;0.05). Subdepressive state was two percents of patients in Group 1 and Group 2. The incidence SA was 59.6% (31 patients) in Group 1 and 52.0% (26 patients) in Group 2. The incidence PA was 74.0% (37 patients) in Group 2 and 67.3% (35 patients) in Group 1. The average score the physical component of health (PCH) was 29,8±4,3 in Group 1, the mental component of health (MCH) – 49.5±7.4 points; p&lt;0.05. In Group 2: PCH – 44.8±6.6 points, MCH – 26.6±7.5 points; p&lt;0.05. Correlation analysis showed negative strong correlations between SA and MCH (r=−0.64, p=0.0005) and between PA and MCH (r=−0.69, p&lt;0.0001), between SA and PCH (r=−0.71, p=0.0001), between depression and PCH (r=−0.69, p=0.023). Negative statistically significant correlation between depression and MCH (r=−0.69, p=0.54) and negative medium correlation between depression and PCH (r=−0.64, p=0.23). Conclusion These findings suggest that we did not identify patients with symptoms of a true depressive (that can cause pseudodementia and influenced to complete tests). 16.5% patients with AF had mild depression of situational or neurotic genesis. Depression may be a pathogenetic factor of AF or develop because of paroxysms AF – psychological stress. More than 50% patients in Group 1 and Group 2 had an increased anxiety score. SA is more common in patients with permanent AF, probably because older people difficult to adapt to a new situation. PA is more common in patient with paroxysmal AF, probably because disease is sudden and causes anxiety. The PCH of QOL is more impairment in patients with permanent AF, because complications (for example heart failure) impairment physical activity. However, PCH also reduced in patient with paroxysmal AF, because disease is sudden may occur during physical activity. The MCH of QOL is more impairment in patients with paroxysmal AF, because waiting attack effect on mental health and social functioning. An increased level of anxiety and depression negatively affected the mental and physical health of patients with AF. Funding Acknowledgement Type of funding source: None

scholarly journals Surgically treated acromegaly patients have a similar quality of life whether controlled by surgery or requiring additional medical therapy (QuaLAT Study)

Pituitary ◽  
2021 ◽  
Author(s):  
Muhammad Fahad Arshad ◽  
Oluwafunto Ogunleye ◽  
Richard Ross ◽  
Miguel Debono
Keyword(s):  
Quality Of Life ◽  
Medical Treatment ◽  
Physical Component Score ◽  
Healthy Controls ◽  
Component Score ◽  
Post Surgery ◽  
Group 3 ◽  
Group 2 ◽  
Group 1

Abstract Purpose There is no consensus on quality of life (QOL) in patients with acromegaly requiring medical treatment after surgery compared with those achieving remission by surgery alone. Methods QuaLAT is a cross-sectional study comparing QOL in surgery-only treated acromegaly patients versus those requiring medical treatment post-surgery. Patients attending clinics were identified and divided into—Group 1: patients who had surgery only and were in biochemical remission, Group 2: all patients on medical treatment post-surgery, Group 3: patients from Group 2 with biochemical control. Participants were asked to fill three questionnaires; Acromegaly Quality of Life Questionnaire (ACROQOL), 36-Item Short Form Survey (SF36), and Fatigue Severity Scale (FSS). Results There were 32 patients in Group 1 and 25 in Group 2. There was no difference in QOL scores between groups 1 and 2, as measured by ACROQOL (mean difference [MD] = − 2.5, 95% CI − 16.6 to 11.6; p = 0.72), SF36v2 [Physical component score (PCS) MD = − 4.9, 95% CI − 10.9 to 1.2; p = 0.12; mental component score MD = − 3.0, 95% CI − 10.5 to 4.4; p = 0.44], or FSS (MD = − 0.004, 95% CI − 1.14 to 1.33; p = 0.1). Comparison between groups 1 and 3 however showed that PCS (and 3 subdomains) was significantly better in group 3 (MD = − 8.3, 95% CI − 14.8 to -1.8; p = 0.01). All three QOL scores were lower when compared with healthy controls. Conclusions Medical treatment not only achieves a QOL comparable to surgery, it may also be associated with better QOL in physical subdomains. When compared with healthy controls, QOL remains worse in treated acromegaly patients compared to controls.

scholarly journals Arthroscopic revision surgery in the arthrofibrotic knee: who benefits?

2018 ◽  
Vol 6 (4_suppl2) ◽  
pp. 2325967118S0002
Author(s):  
Christian Weber ◽  
Jochen Müller-Stromberg ◽  
Nicola Weber
Keyword(s):  
Quality Of Life ◽  
Revision Surgery ◽  
Oxford Knee Score ◽  
Consecutive Series ◽  
Knee Score ◽  
Sports Activity ◽  
Activity Scale ◽  
Group 2 ◽  
Group 1

Arthrofibrotic stiffness of the knee joint has been recognized as a highly debilitating complication after complex knee reconstruction. The clinical impact of arthroscopic revision surgery was evaluated for patients with knee arthrofibrosis following total knee arthroplasty (TKA) and after joint preserving procedures. Hypothesis: Arthroscopic revision surgery is associated with functional benefits in both groups. We retrospectively reviewed a consecutive series of adult patients (#CHR: greaterlike#18 years) at a single institution who underwent arthroscopic revision for knee stiffness. Minimum follow-up: 24 months. The analysis included demographic, surgical and histological data. The following outcome parameters were evaluated: pain (Visual Analog Scale, VAS); objective score systems (Oxford Knee Score) and patient activity (Tegner Activity Scale (TAS), Univ. of California Activity Scale (UCLA)). Furthermore, range of motion (ROM) was compared pre-, intra- and postoperatively. Finally, we compared body mass index (BMI) and quality of life (EQ-5D) changes. We identified a total of 57 patients who underwent arthroscopic adhesiolysis for knee arthrofibrosis: 45 after TKA (Group 1) and 12 patients with ligament reconstruction (Group 2). The patient cohort included thirty (43.5%) males and thirty-six (56.5%) females. Mean age was 69 (SD 10.6) years in the TKA group and 41 (SD 12.7) years in group 2 (p=0.01). Mean length of stay (LOS) was 4.6 days in Group 1 and 2.8 days in Group 2. Pain levels (VAS) were reduced significantly in both groups (p=0.004); from 7.5 to 4.8 in Group 1 and from 7.8 to 2.9 (Group 2). In terms of sports activity, 26 patients (37.7%) reported an improved sports activity (UCLA score). The TAS improved from 2.58 to 4.08 in Group 2. The Oxford Knee Score improved from 23.5 to 27.2 in Group 1 and from 16.5 to 36.3 in Group 2. No reduction in BMI was observed. However, quality of life (EQ-5D) improved from 47.6 to 51.9 Group 1; and from 52.9 to 71.7 in Group 2. Arthroscopic revision of the stiff knee may offer clinical benefits in terms of significant pain reduction, an improved level of activity and quality of life in stiffness following both TKA and joint preserving surgical reconstruction.

TREATMENT OF A COMBINATION OF DIABETIC POLYNEUROPATHY WITH TYPE 2 DIABETES AND GOUT

2021 ◽  
Vol 7 (3) ◽  
pp. 24-27
Author(s):  
S. Tokareva ◽  
R. Kupeev ◽  
Aleksandr Hadarcev ◽  
Sof'ya Belyaeva
Keyword(s):  
Quality Of Life ◽  
Glycosylated Hemoglobin ◽  
Fasting Blood Glucose ◽  
Diabetic Polyneuropathy ◽  
Sf 36 ◽  
Effect Of Therapy ◽  
Male Patients ◽  
Group 2 ◽  
Group 1

The purpose of the work. To show the expediency of using a complex DPN therapy with thio-gammoy-600 in combination with TPP, B12-ankerman and febuxostat. Materials and research methods. The study involved 28 male patients suffering from DM2 aged 56-77 years, with an av-erage age of 64.6±0.7 years. The initial values of average fasting blood glucose were 7.8 ± 1.52 mmol/l, glycosylated hemoglobin 7.4 ± 0.13%. Two groups were identified: group 1 (main) – 14 people and group 2 (control) - 16 people. In group 2, basic DPN therapy was used (thiogamma 600 mg/day for 4 months). For the first 14 days, the drug was administered intravenously, and then administered orally. In group 1, in addition to basic DPN therapy, B12-ankerman and febuxostat (adenuric) – 80 mg/day were received. TPP was carried out on a portable device TPP-03 for 15 minutes daily. This treatment regimen was used for 4 months. The assessment of the quality of life (QL) was carried out using the MOS SF-36 questionnaire. Results and their discussion. Four months after the start of therapy, more pronounced changes were observed in patients of the first group. The total score of the NSS scale in this group increased by 28.9%, and in group 2 - by 18.8%. The positive effect of therapy with adenuric and TES on the course of DPN shows that the use of this treatment will naturally lead to an improve-ment in the quality of life of patients, the dynamics of which was studied according to the results of the SF-36 questionnaire.

MO799IS COMBINATION OF MAINTENANCE HEMODIALYSIS WITH HEMOPERFUSION AN EFFECTIVE METHOD IN MANAGEMENT OF RENAL OSTEODYSTROPHY AND INFLAMMATION IN HEMODIALYSIS PATIENTS?

2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
Amela Beciragic ◽  
Alma Mutevelic-Turkovic ◽  
Amela Dervisevic ◽  
Badema Äœengiä† Roljiä† ◽  
Fahrudin Masnic ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Blood Pressure ◽  
Renal Osteodystrophy ◽  
Uremic Toxins ◽  
Large Molecule ◽  
Maintenance Hemodialysis ◽  
Group 2 ◽  
Group 1

Abstract Background and Aims Some of the conditions which occur in maintenance hemodialysis (MHD) patients with a high incidence resulting in a decline in their quality of life, include malnutrition, renal osteodystrophy, refractory hypertension and chronic systemic inflammation. In developing countries, due to the low level of economic development, low-flux dialysis is the main means of extracorporeal blood purification therapy. But it can hardly remove the middle and large molecule uremic toxins and protein-bound toxins; as a result, the patients suffer from long-term complications and poor quality of life. In this study, we attempted to investigate whether the combination of maintenance hemodialysis (MHD) with hemoperfusion (HP) could improve the clearance rate of middle and large molecule uremic toxins so as to improve their uremic complications. Method A total of 54 patients, who underwent routine hemodialysis, were assessed in this study. Those patients were randomly divided into two groups: Group 1 (27 patients) received combined treatment of HD with hemoperfusion (HP) in this regimen: HD 2 times a week with HD+HP once a week two times in a row, then after two weeks, and afterwards once a month as a maintenance treatment. Group 2 (27 patients) was only undergoing maintenance HD 3 times a week. The clinical and laboratory properties of both groups were followed up for 18 months, whereas the primary outcomes included normal clinical data, high sensitive C-reactive protein (hsCRP), immunoreactive parathyroid hormone (iPTH), phosphorus (P04), calcium (Ca), albumin, iron (Fe), total iron binding capacity (TIBC), hemoglobin, Epo doses and types of hypertensive drugs. Results At the end of the 18-month observation, the serum concentration of albumin, P04, hsCRP, systolic blood pressure (SBP) and diastolic blood pressure (DBP) were lower with Group 1 than with Group 2 (p&lt;0.05). Whereas, higher levels of iPTH were noticed in group 1, but when the laboratory and clinical data are analysed of the group 1 alone a statistically significant lower values after the observational period are noticed especially in the serum values of iPTH (p&lt;0.05), P04 (p&lt;0.001), CRP (p&lt;0.011), SBP and DBP (p&lt;0.05). Conclusion HD+HP was superior to HD in regularly eliminating middle and large molecule uremic toxins accumulated in the body which is mostly shown through reducing the values of iPTH and hsCRP. These findings suggest a potential role for HD+HP in the treatment of inflammation and renal osteodystrophy as well, because lowering these values of iPTH leads to a normalization of other minerals which is expected and therefore leads to a stabilization of this long-term uremic complications, which can improve the overall general condition of the MHD patient.

scholarly journals Correlations between the Quality of Life Domains and Clinical Variables in Sarcopenic Osteoporotic Postmenopausal Women

2020 ◽  
Vol 9 (2) ◽  
pp. 441 ◽  
Author(s):  
Mariana Cevei ◽  
Roxana Ramona Onofrei ◽  
Felicia Cioara ◽  
Dorina Stoicanescu
Keyword(s):  
Quality Of Life ◽  
Postmenopausal Women ◽  
Associated Factors ◽  
Life Domains ◽  
Major Health ◽  
Hand Grip ◽  
History Of ◽  
Group 2 ◽  
Group 1

(1) Background: both sarcopenia and osteoporosis are major health problems in postmenopausal women. The aim of the study was to evaluate the quality of life (QoL) and the associated factors for sarcopenia in osteoporotic postmenopausal women, diagnosed according to EWGSOP2 criteria. (2) Methods: the study sample comprised 122 osteoporotic postmenopausal women with low hand grip strength and was divided into two groups: group 1 (probable sarcopenia) and group 2 (sarcopenia). QoL was assessed using the validated Romanian version of SarQol questionnaire. (3) Results: the D1, D4, D5, D7 and total SarQoL scores were significantly lower in women from group 2 compared to group 1. In group 2, women older than 70 years had significant lower values for D1, D3, D4, D6 and total SarQoL scores. Age, history of falls and the presence of confirmed and severe sarcopenia were predictors for overall QoL. (4) Conclusions: the frequency of sarcopenia was relatively high in our sample, with body mass index and history of falls as predictors for sarcopenia. Older osteoporotic postmenopausal women, with previous falls and an established sarcopenia diagnosis (low muscle strength and low muscle mass), were more likely to have a decreased quality of life.

Perioperative Outcomes and Quality of Life after Repair of Recurrent Hiatal Hernia are Compromised Compared with Primary Repair

2019 ◽  
Vol 85 (5) ◽  
pp. 556-560 ◽  
Author(s):  
Andrew M. Brown ◽  
Ramzy Nagle ◽  
Michael J. Pucci ◽  
Karen Chojnacki ◽  
Ernest L. Rosato ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Recurrent Hernia ◽  
Perioperative Outcomes ◽  
Complication Rates ◽  
Conversion Rates ◽  
Quality Of Life Index ◽  
Group 2 ◽  
Gastrointestinal Quality Of Life ◽  
Group 1

Paraesophageal hernia repair (PEHR) is burdened by high recurrence rates that frequently lead to redo PEHR. Revisional surgery, because of higher complexity, higher risk of injury, and the intrinsic risk of recurrence, has increased likelihood of higher complication rates and decreased quality of life (QOL) postoperatively. We aimed to compare perioperative outcomes and QOL after revisional and primary PEHR. A retrospective review of all patients who underwent PEHR for a recurrent hernia between January 2011 and July 2016 was completed. These were matched with a contemporary cohort of patients who underwent primary PEHR by age, gender, and BMI. Perioperative measures were compared. The patients were invited to complete the Gastrointestinal Quality of Life Index (GIQLI) to assess response to surgical intervention. There were 24 patients (group 1) who underwent revisional PEHR, and they were matched to 48 patients (group 2) who had a primary hernia repair. Thirteen patients in group 1 responded to the survey (54%), whereas 21 patients’ responses were received from group 2 (44%). Conversion rates, LOS, and mean Gastrointestinal Quality of Life Index scores were significantly different between the two groups. Reoperative procedures for paraesophageal and hiatal hernias are burdened by higher conversion rates and length of stay, with similar overall complication rates. Patients who are undergoing repair of a recurrent hernia should be preoperatively counseled, and should have realistic expectations of their GI QOL after surgery.

scholarly journals An observational study on quality of life and preferences to sustain life in locked-in state

Neurology ◽  
2019 ◽  
Vol 93 (10) ◽  
pp. e938-e945 ◽  
Author(s):  
Magdalena Kuzma-Kozakiewicz ◽  
Peter M. Andersen ◽  
Katarzyna Ciecwierska ◽  
Cynthia Vázquez ◽  
Olga Helczyk ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Observational Study ◽  
Physical Function ◽  
Rating Scale ◽  
Well Being ◽  
Psychosocial Adaptation ◽  
Subjective Well Being ◽  
Cross Sectional ◽  
Hastened Death

ObjectiveThis is an observational study on well-being and end-of-life preferences in patients with amyotrophic lateral sclerosis (ALS) in the locked-in state (LIS) in a Polish sample within the EU Joint Programme–Neurodegenerative Disease Research study NEEDSinALS (NEEDSinALS.com).MethodsIn this cross-sectional study, patients with ALS in LIS (n = 19) were interviewed on well-being (quality of life, depression) as a measure of psychosocial adaptation, coping mechanisms, and preferences towards life-sustaining treatments (ventilation, percutaneous endoscopic gastroscopy) and hastened death. Also, clinical data were recorded (ALS Functional Rating Scale–revised version). Standardized questionnaires (Anamnestic Comparative Self-Assessment [ACSA], Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), ALS Depression Inventory–12 items [ADI-12], schedule of attitudes toward hastened death [SAHD], Motor Neuron Disease Coping Scale) were used, which were digitally transcribed; answers were provided via eye-tracking control. In addition, caregivers were asked to judge patients' well-being.ResultsThe majority of patients had an ACSA score >0 and a SEIQoL score >50% (indicating positive quality of life) and ADI-12 <29 (indicating no clinically relevant depression). Physical function did not reflect subjective well-being; even more, those with no residual physical function had a positive well-being. All patients would again choose the life-sustaining techniques they currently used and their wish for hastened death was low (SAHD <10). Caregivers significantly underestimated patient's well-being.InterpretationSome patients with ALS in LIS maintain a high sense of well-being despite severe physical restrictions. They are content with their life-sustaining treatments and have a strong will to live, which both may be underestimated by their families and public opinion.

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