No deterioration in health-related quality of life in patients with axial spondyloarthritis followed for 5 years in ordinary outpatient clinics in the biological treatment era

Abstract Background Axial spondyloarthritis (ax-SpA) causes pain, fatigue, stiffness, loss of physical function and impaired health-related quality of life (HRQOL). Aims The study aimed to explore the changes in HRQOL over 5 years in patients with ax-SpA and to identify baseline predictors associated with changes in HRQOL assessed using three HRQOL measures. Methods Demographic, disease, medication and HRQOL data were collected at baseline and at 5-year follow-up. HRQOL was assessed using SF-6D, 15D and SF-36. Analyses involved McNemar, independent paired t tests and multiple regression. Results In the 240 (women 31%, men 69%) ax-SpA patients assessed (mean age 46 years), measures reflecting disease activity decreased and co-morbidities increased, and more patients were treated with biologic drugs during follow-up. No deterioration in HRQOL was observed between baseline and 5-year follow-up; indeed, there was a significant increase in SF-6D and SF-36 PCS scores. Improvement in HRQOL measured by SF-6D was associated with younger age, higher education, low Bath Ankylosing Spondylitis (BAS) Activity Index (BASDAI), high BAS Patient Global Score and high C-reactive protein; improvement in SF-36 PCS was associated with younger age, higher education, low BASDAI and no use of biological treatment at baseline. Conclusion Our ax-SpA outpatient clinic patients, with more patients treated with biologic drugs during the 5-year follow-up, did not deteriorate in HRQOL. In fact, the physical dimension in HRQOL improved over the years, as did measures reflecting disease activity. Our study adds evidence to the importance of suppressing inflammation to maintain and improve HRQOL in ax-SpA patients.

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Health-related quality of life in ICU survivors—10 years later

Scientific Reports ◽

10.1038/s41598-021-94637-z ◽

2021 ◽

Vol 11 (1) ◽

Author(s):

José G. M. Hofhuis ◽

Augustinus J. P. Schrijvers ◽

Tjard Schermer ◽

Peter E. Spronk

Keyword(s):

Effect Size ◽

Reference Population ◽

Health Related Quality ◽

Sf 36 ◽

Icu Discharge ◽

Related Quality ◽

Health Related ◽

Surgical Icu

AbstractMany Intensive Care (ICU) survivors experience long lasting impairments in physical and psychological health as well as social functioning. The objective of our study was to evaluate these effects up to 10 years after ICU discharge. We performed a long-term prospective cohort study in patients admitted for longer than 48 h in a medical-surgical ICU. We evaluated health-related quality of life (HRQOL) before ICU admission using the Short-form-36 (SF-36), at ICU discharge, at hospital discharge and at 1, 2, 5 and 10 years follow up (all by patients). Changes in HRQOL were assessed based on linear mixed modeling. We included a total of 749 patients (from 2000 to 2008). During 10 years 475 (63.4%) patients had died, 125 (16.7%) patients were lost to follow up and 149 (19.9%) patients could be evaluated. The mean scores of four HRQOL dimensions (i.e., physical functioning (p < 0.001; mean 54, SD 32, effect size 0.77, 95% CI [0.54–1.0]), role-physical (p < 0.001; mean 44, SD 47, effect size 0.65, 95% CI [0.41–0.68] general health (p < 0.001; mean 52, SD 27, effect size 0.48; 95% CI 0.25–0.71) and social functioning (p < 0.001; mean 72, SD 32, effect size 0.41, 95% CI [0.19–0.64]) were still lower 10 years after ICU discharge compared with pre-admission levels (n = 149) and with an age reference population. Almost all SF-36 dimensions changed significantly over time from ICU discharge up to 10 years after ICU discharge. Over the 10 year follow up physical functioning of medical-surgical ICU survivors remains impaired compared with their pre-admission values and an age reference population. However, effect sizes showed no significant differences suggesting that surviving patients largely regained their age-specific HRQOL at 10 years.

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The Impact of Combat Ocular Trauma and Traumatic Brain Injury on Vision- and Health-Related Quality of Life Among U.S. Military Casualties

Military Medicine ◽

10.1093/milmed/usab233 ◽

2021 ◽

Author(s):

Rose K Sia ◽

Denise S Ryan ◽

Daniel I Brooks ◽

Janice M Kagemann ◽

Kraig S Bower ◽

...

Keyword(s):

Quality Of Life ◽

Traumatic Brain Injury ◽

Ocular Trauma ◽

Health Related Quality ◽

Sf 36 ◽

Related Quality ◽

Health Related ◽

Composite Scores

ABSTRACT Purpose The purpose of this study was to assess visual and health-related quality of life (QOL) among U.S. military service members who sustained combat ocular trauma (COT) with or without associated traumatic brain injury (TBI). Methods This was a single-center, prospective observational study of U.S. service members (n = 88) with COT who were treated at Walter Reed National Military Medical Center. Participants completed the National Eye Institute Visual Function Questionnaire (VFQ-25) at enrollment and at follow-up (>1 year) and supplemental surveys: Neurobehavioral Symptom Inventory, the Medical Outcomes 36-item Short Form Survey (SF-36), and Mayo-Portland Adaptability Inventory. Results Initial and follow-up VFQ-25 showed a statistically significant increase in median scores for near activities (initial: 75.0, follow-up 83.3; P = .004) and peripheral vision (initial: 50.0, follow-up: 75.0; P = .009) and in composite scores (initial: 79.5, follow-up: 79.8; P = .022). Comparing those who did (n = 78) and did not (n = 8) have a TBI history, there were no significant differences in median change in VFQ-25 composite scores (with TBI: 2.3 vs. no TBI: 10.7; P = .179). Participants with a TBI history had a significantly lower median SF-36 General Health score (with TBI: 67.5 vs. no TBI: 92.5; P = .009) Conclusions Vision-related QOL of COT patients is generally good in the long term. However, those with both COT and a history of TBI conditions showed significantly worse functioning in several domains than those without TBI. As TBI is a common finding in COT, this association is an important factor impacting this population’s overall clinical presentation and daily functions.

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Better health-related quality of life in kidney transplant patients compared to chronic kidney disease patients with similar renal function

PLoS ONE ◽

10.1371/journal.pone.0257981 ◽

2021 ◽

Vol 16 (10) ◽

pp. e0257981

Author(s):

Jung-Hwa Ryu ◽

Tai Yeon Koo ◽

Han Ro ◽

Jang-Hee Cho ◽

Myung-Gyu Kim ◽

...

Keyword(s):

Quality Of Life ◽

Chronic Kidney Disease ◽

Kidney Disease ◽

Health Related Quality ◽

Sf 36 ◽

Related Quality ◽

Health Related ◽

Over Time

Renal functional deterioration is associated with physical and mental burdens for kidney transplant (KT) and chronic kidney disease (CKD) patients. However, the change in health-related quality of life (HRQOL) over time in KT patients compared to that of native CKD patients has not been evaluated. We addressed this issue using KT patients registered in the KNOW-KT cohort study and patients at CKD stage 1–3 registered in the KNOW-CKD cohort study. HRQOL scores were assessed using the Kidney Disease Quality of Life Short Form at baseline, 2-, and 4-years follow-up in 842 KT patients and at baseline and 5-year follow-up in 1,355 CKD patients. SF-36 scores declined at the 4-year follow-up, whereas CKD-targeted scores showed no change in the KT group. In contrast, CKD-targeted scores as well as SF-36 scores were decreased at the 5-year follow-up in CKD patients. When prognostic factors were analyzed for longitudinal HRQOL data over time, renal functions, diabetes, cardiovascular and cerebrovascular diseases, hemoglobin level, marital status, income, employment, and health care were significant prognostic factors. Furthermore, KT was an independent prognostic factor for better HRQOL. These results highlight that KT can offer a better HRQOL than that of CKD patients, even when renal function is similar.

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Pediatric hydrocephalus: 40-year outcomes in 128 hydrocephalic patients treated with shunts during childhood. Assessment of surgical outcome, work participation, and health-related quality of life

Journal of Neurosurgery Pediatrics ◽

10.3171/2015.5.peds14532 ◽

2015 ◽

Vol 16 (6) ◽

pp. 633-641 ◽

Cited By ~ 50

Author(s):

Anne Henriette Paulsen ◽

Tryggve Lundar ◽

Karl-Fredrik Lindegaard

Keyword(s):

Mortality Rate ◽

Work Participation ◽

Shunt Failure ◽

Health Related Quality ◽

Pediatric Hydrocephalus ◽

Sf 36 ◽

Related Quality ◽

Health Related

OBJECT Treatment for hydrocephalus has not advanced appreciably since the advent of CSF shunts more than 50 years ago. The outcome for pediatric patients with hydrocephalus has been the object for several studies; however, much uncertainty remains regarding the very long term outcome for these patients. Shunting became the standard treatment for hydrocephalus in Norway during the 1960s, and the first cohorts from this era have now reached middle age. Therefore, the objective of this study was to review surgical outcome, mortality, social outcome, and health-related quality of life in middle-aged patients treated for hydrocephalus during childhood. METHODS Data were collected in all patients, age 14 years or less, who required a CSF shunt during the years 1967–1970. Descriptive statistics were assessed regarding patient characteristics, surgical features, social functioning, and work participation. The time and cause of death, if applicable, were also determined. Kaplan-Meier survival estimates were used to determine the overall survival of patients. Information regarding self-perceived health and functional status was assessed using the 36-Item Short Form Health Survey (SF-36) and the Barthel Index score. RESULTS A total of 128 patients were included in the study, with no patient lost to follow-up. Of the 128 patients in the study, 61 (47.6%) patients died during the 42–45 years of observation. The patients who died belonged to the tumor group (22 patients) and the myelomeningocele group (13 patients). The mortality rate was lowered to 39% if the patients with tumors were excluded. The overall mortality rates at 1, 2, 10, 20, and 40 years from time of initial shunt insertion were 16%, 24%, 31%, 40%, and 48% respectively. The incidence of shunt-related mortality was 8%. The majority of children graduated from a normal school (67%) or from a school specializing in education for physically handicapped children (20%). Self-perceived health was significantly poorer in 6 out of 8 domains assessed by SF-36 as compared with the background population. Functional status among the survivors varied greatly during the follow-up period, but the majority of patients were self-dependent. A total of 56% of the patients were socially independent, and 42% of the patients were employed. CONCLUSIONS Approximately half of the patients are still alive. During the 42–45 year follow-up period, the mortality rate was 48%. Two deaths were due to acute shunt failure, and at least 8% of the deaths were shunt related (probable or late onset). The morbidity in middle-aged individuals treated for pediatric hydrocephalus is considerable. The late mortality rate was low, but not negligible. Twelve patients died during the last 2 decades, 1 of whom died because of acute shunt failure. Although the shunt revision rate was decreasing during the study period, many patients required shunt surgery during adulthood. Forty-one revisions in 21 patients were performed during the last decade. Thus, there is an obvious need for life-long follow-up in these patients.

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Health-related quality of life of COVID-19 survivors at 6 months after hospital discharge: a cohort study

10.21203/rs.3.rs-176489/v1 ◽

2021 ◽

Author(s):

MeiXuan Lin ◽

Liqun Huang ◽

Danwen Zheng ◽

Linjie Zhang ◽

Bing Feng ◽

...

Keyword(s):

Quality Of Life ◽

Risk Factors ◽

Cognitive Function ◽

Health Related Quality ◽

Sf 36 ◽

Related Quality ◽

Health Related

Abstract Background: COVID-19 is a multi-systemic disease that is highly contagious and pathogenic. The long-term consequences of it are not yet clear, as is whether society and life can return to a healthy state. Long-term assessment of their health-related quality of life (HRQoL) is essential. This study aimed to investigate HRQoL and its risk factors in COVID-19 survivors at a follow-up of 6-month. Methods: A multicenter cross-sectional survey was conducted among 192 COVID-19 patients with confirmed age ≥ 18 years who were discharged from various hospitals in Wuhan from January to April 2020. The demographic characteristics, clinical characteristics, and laboratory results of the study subjects were obtained from the hospital's medical records. Survivors' HRQoL was assessed using the Short Form 36 (SF-36), cognition was assessed using the ascertain dementia eight-item informant questionnaire (AD8), and survivors' pulmonary function were examined. All participants in this study completed the survey and testing at Hubei Provincial Hospital of Chinese and Western Medicine. SF-36 scores were compared with the Chinese norm, and logistic regression and multivariate analysis were used to investigate the factors affecting HRQoL in COVID-19 survivors. Results: SF-36 showed significant differences in HRQoL between COVID-19 survivors and the general Chinese population ( P< 0.05).Multiple linear regression demonstrated that age was negatively correlated with physical functioning (PF), role-physical limitation (RP) and social functioning (SF) ( P <0.05). Bodily pain (BP), vitality (VT), SF and role-emotional limitation (RE) were negatively correlated with females ( P <0.05). Length from discharge to follow‐up was positively correlated with PF and RP ( P <0.05). Abnormal cognitive function was negatively correlated with PF, RP, general health (GH), VT, SF, RE and mental health (MH) ( P <0.05). Abnormal Carbon Monoxide Diffusing Capacity (DLCO%<80%) was significantly negatively correlated with PF and SF ( P <0.05).In addition, there was a significant negative correlation between Coronary heart disease and RP, GH, VT and RE ( P <0.05).Logistic regression analysis demonstrated that age(OR 1.032) and AD8 scores (OR 1.203)were risk factors associated with a low physical component summary (PCS) score. Length from discharge to follow‐up (OR 0.971) was the protective factor for PCS score. Abnormal cognitive function (OR 1.543) was a significant determinant associated with a mental component summary (MCS)<50 in COVID-19 patients. Conclusions: The HRQoL of COVID-19 survivors remains to be improved at six-month follow-up. Future studies should track HRQoL in older adults, women, patients with abnormal DLCO, and abnormal cognitive function for a long time and provide them with rehabilitation advice and guidance.

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The effects of recombinant human erythropoietin on functional health and well-being in chronic dialysis patients.

Journal of the American Society of Nephrology ◽

10.1681/asn.v75763 ◽

1996 ◽

Vol 7 (5) ◽

pp. 763-773 ◽

Cited By ~ 1

Author(s):

K M Beusterien ◽

A R Nissenson ◽

F K Port ◽

M Kelly ◽

B Steinwald ◽

...

Keyword(s):

Quality Of Life ◽

Well Being ◽

Health Related Quality ◽

Dialysis Patients ◽

Human Erythropoietin ◽

Sf 36 ◽

Related Quality ◽

Health Related

As a component of the open-label, multicenter National Cooperative Recombinant Human Erythropoietin (Epo) Study, the health-related quality-of-life effects of Epo therapy were assessed in 484 dialysis patients who had not previously been treated with Epo therapy (New-to-Epo) and 520 dialysis patients who were already receiving Epo therapy at the time of study enrollment (Old-to-Epo). Using scales from the Medical Outcomes Study 36-item Short Form Health Survey (SF-36), health-related quality of life was assessed on study enrollment (baseline) and at an average of 99 days follow-up. At baseline, SF-36 scores for Old- and New-to-Epo patients were well below those observed in the general population, reflecting substantial impairments in functional status and well-being among patients with chronic renal failure. Significant improvements from baseline to follow-up were observed among New-to-Epo patients in vitality, physical functioning, social functioning, mental health, looking after the home, social life, hobbies, and satisfaction with sexual activity (P < 0.05 for each). The mean improvements in hematocrit values among New-to-Epo and Old-to Epo patients were 4.6 and 0.3, respectively. At the time of follow-up, SF-36 scores for New-to-Epo patients were comparable with those observed among Old-to-Epo patients, whose scores did not change significantly from baseline to follow-up. Analysis of the relationship between Epo therapy, hematocrit values, and health-related quality of life suggest that some of the beneficial quality-of-life effects of Epo are mediated through a change in hematocrit level.

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The impact of demographic and clinical characteristics on the trajectories of health-related quality of life among patients with Fabry disease

Orphanet Journal of Rare Diseases ◽

10.1186/s13023-021-02066-y ◽

2021 ◽

Vol 16 (1) ◽

Author(s):

Solrun Sigurdardottir ◽

Birgitte Bjerkely ◽

Trond G. Jenssen ◽

Per Mathisen ◽

Charlotte von der Lippe ◽

...

Keyword(s):

Medical Complications ◽

Health Related Quality ◽

Sf 36 ◽

Related Quality ◽

Health Related ◽

Mental Hrqol ◽

Male Sex ◽

Lower Hrqol

Abstract 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.

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Better Health-related Quality of Life in kidney Transplant Patients Compared to Chronic Kidney Disease Patients with Similar Renal Function

10.21203/rs.3.rs-154641/v1 ◽

2021 ◽

Author(s):

Jung-Hwa Ryu ◽

Tai Yeon Koo ◽

Han Ro ◽

Jang-Hee Cho ◽

Cheol Woong Jung ◽

...

Keyword(s):

Quality Of Life ◽

Chronic Kidney Disease ◽

Kidney Disease ◽

Health Related Quality ◽

Sf 36 ◽

Related Quality ◽

Health Related ◽

Over Time

Abstract Renal functional deterioration is associated with physical and mental burdens for kidney transplant (KT) and chronic kidney disease (CKD) patients. However, the change in health-related quality of life (HRQOL) over time in KT patients compared to that of pre-dialysis CKD patients has not been evaluated. We addressed this issue using KT patients registered in the KNOW-KT cohort study and patients at CKD stage 1–3 registered in the KNOW-CKD cohort study. HRQOL scores were assessed using the Kidney Disease Quality of Life Short Form at baseline, 2-, and 4-years follow-up in 842 KT patients and at baseline and 5-year follow-up in 1,355 CKD patients. SF-36 scores declined at the 4-year follow-up, whereas CKD-targeted scores showed no change in the KT group. In contrast, CKD-targeted scores as well as SF-36 scores were decreased at the 5-year follow-up in CKD patients. When prognostic factors were analyzed for longitudinal HRQOL data over time, renal functions, diabetes, cardiovascular and cerebrovascular diseases, hemoglobin level, marital status, income, employment, and health care were significant prognostic factors. Furthermore, KT was an independent prognostic factor for better HRQOL. These results highlight that KT can offer a better HRQOL than that of CKD patients, even when renal function is similar.

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Oral Anticoagulation: the impact of the therapy in health-related quality of life at six-month follow-up

Revista Latino-Americana de Enfermagem ◽

10.1590/s0104-11692013000700014 ◽

2013 ◽

Vol 21 (spe) ◽

pp. 105-112 ◽

Cited By ~ 1

Author(s):

Ariana Rodrigues da Silva Carvalho ◽

Márcia Aparecida Ciol ◽

Felice Tiu ◽

Lídia Aparecida Rossi ◽

Rosana Aparecida Spadoti Dantas

Keyword(s):

Quality Of Life ◽

Oral Anticoagulation ◽

Anticoagulation Therapy ◽

Health Related Quality ◽

Satisfaction Scale ◽

Sf 36 ◽

Related Quality ◽

Health Related

OBJECTIVE: to study the changes in health-related quality of life from beginning of anticoagulation therapy to six-month follow-up, and to study associations of sociodemographic and clinical characteristics with measures of quality of life and general health status at six-month follow-up, in individuals using oral anticoagulation due to various medical indications for the therapy. METHOD: prospective study performed at a city in the state of Paraná, Brazil, composed of 78 patients. Measures included the Duke Anticoagulation Satisfaction Scale and the Medical Outcomes Survey Short Form SF-36. RESULTS: mean age was 57 years (S.D.= 16) and 54% were women. Compared to the beginning of therapy, there was a statistically significant improvement in health-related quality of life at six-month follow-up. Linear regression analyses explained 32% and 30%, respectively, of the variance of the Duke Anticoagulation Satisfaction Scale and of the general health status. There was improvement in all components of the SF-36, except Mental Health. CONCLUSION: The use of oral anticoagulation therapy was associated with improvement in health-related quality of life in the first six months of therapy. This study is longitudinal and therefore, has fewer limitations than cross-sectional studies published to date in the Nursing literature in Brazil.

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Does breast reduction surgery improve health-related quality of life? A prospective cohort study in Australian women

BMJ Open ◽

10.1136/bmjopen-2019-031804 ◽

2020 ◽

Vol 10 (2) ◽

pp. e031804

Author(s):

Tamara Crittenden ◽

David I Watson ◽

Julie Ratcliffe ◽

Philip A Griffin ◽

Nicola R Dean

Keyword(s):

Quality Of Life ◽

Breast Reduction ◽

Health Related Quality ◽

Breast Hypertrophy ◽

Breast Reduction Surgery ◽

Sf 36 ◽

Related Quality ◽

Health Related

ObjectivesTo assess the health burden of breast hypertrophy and the comparative effectiveness of breast reduction surgery in improving health-related quality of life.DesignProspective cohort study.SettingA major public tertiary care hospital in Australia.ParticipantsWomen with symptomatic breast hypertrophy who underwent breast reduction surgery were followed for 12 months. A comparison control cohort comprised women with breast hypertrophy who did not undergo surgery.InterventionsBilateral breast reduction surgery for women in the surgical cohort.Main outcome measuresThe primary outcome measure was health-related quality of life measured preoperatively and at 3, 6 and 12 months postoperatively using the Short Form-36 (SF-36) questionnaire. Secondary outcome measures included post-surgical complications.Results209 patients in the surgical cohort completed questionnaires before and after surgery. 124 patients in the control hypertrophy cohort completed baseline and 12-month follow-up questionnaires. At baseline, both groups had significantly lower scores compared with population norms across all scales (p<0.001). In the surgical cohort significant improvements were seen across all eight SF-36 scales (p<0.001) following surgery. Within 3 months of surgery scores were equivalent to those of the normal population and this improvement was sustained at 12 months. SF-36 physical and mental component scores both significantly improved following surgery, with a mean change of 10.2 and 9.2 points, respectively (p<0.001). In contrast, SF-36 scores for breast hypertrophy controls remained at baseline across 12 months. The improvement in quality of life was independent of breast resection weight and body mass index.ConclusionBreast reduction significantly improved quality of life in women with breast hypertrophy. This increase was most pronounced within 3 months of surgery and sustained at 12-month follow-up. This improvement in quality of life is comparable to other widely accepted surgical procedures. Furthermore, women benefit from surgery regardless of factors including body mass index and resection weight.

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