Effectiveness of the Chiari Health Index for Pediatrics instrument in measuring postoperative health-related quality of life in pediatric patients with Chiari malformation type I

OBJECTIVEThe authors’ previously published work validated the Chiari Health Index for Pediatrics (CHIP), a new instrument for measuring health-related quality of life (HRQOL) for pediatric Chiari malformation type I (CM-I) patients. In this study, the authors further evaluated the CHIP to assess HRQOL changes over time and correlate changes in HRQOL to changes in symptomatology and radiological factors in CM-I patients who undergo surgical intervention. Strong HRQOL evaluation instruments are currently lacking for pediatric CM-I patients, creating the need for a standardized HRQOL instrument for this patient population. This study serves as the first analysis of the CHIP instrument’s effectiveness in measuring short-term HRQOL changes in pediatric CM-I patients and can be a useful tool in future CM-I HRQOL studies.METHODSThe authors evaluated prospectively collected CHIP scores and clinical factors of surgical intervention in patients younger than 18 years. To be included, patients completed a baseline CHIP captured during the preoperative visit, and at least 1 follow-up CHIP administered postoperatively. CHIP has 2 domains (physical and psychosocial) comprising 4 components, the 3 physical components of pain frequency, pain severity, and nonpain symptoms, and a single psychosocial component. Each CHIP category is scored on a scale, with 0 indicating absent and 1 indicating present, with higher scores indicating better HRQOL. Wilcoxon paired tests, Spearman correlations, and linear regression models were used to evaluate and correlate HRQOL, symptomatology, and radiographic factors.RESULTSSixty-three patients made up the analysis cohort (92% Caucasian, 52% female, mean age 11.8 years, average follow-up time 15.4 months). Dural augmentation was performed in 92% of patients. Of the 63 patients, 48 reported preoperative symptoms and 42 had a preoperative syrinx. From baseline, overall CHIP scores significantly improved over time (from 0.71 to 0.78, p < 0.001). Significant improvement in CHIP scores was seen in patients presenting at baseline with neck/back pain (p = 0.015) and headaches (p < 0.001) and in patients with extremity numbness trending at p = 0.064. Patients with syringomyelia were found to have improvement in CHIP scores over time (0.75 to 0.82, p < 0.001), as well as significant improvement in all 4 components. Additionally, improved CHIP scores were found to be significantly associated with age in patients with cervical (p = 0.009) or thoracic (p = 0.011) syrinxes.CONCLUSIONSThe study data show that the CHIP is an effective instrument for measuring HRQOL over time. Additionally, the CHIP was found to be significantly correlated to changes in symptomatology, a finding indicating that this instrument is a clinically valuable tool for the management of CM-I.

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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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The association between health-related quality of life and mortality among hemodialysis patients

Medicina ◽

10.3390/medicina46080076 ◽

2010 ◽

Vol 46 (8) ◽

pp. 531 ◽

Cited By ~ 14

Author(s):

Neda Kušleikaitė ◽

Inga Bumblytė ◽

Vytautas Kuzminskis ◽

Rūta Vaičiūnienė

Keyword(s):

Quality Of Life ◽

Hemodialysis Patients ◽

Maintenance Hemodialysis ◽

Health Related Quality ◽

Point Increase ◽

Related Quality ◽

Health Related ◽

Over Time

Introduction. Mortality rates for patients undergoing maintenance hemodialysis remain high. Published data regarding association between health-related quality of life (HRQOL) and mortality among hemodialysis patients are inconsistent. Very few data are published on the change in HRQOL over time as a predictor of mortality. The aim of this study was to assess whether HRQOL and change of it over time could be considered an independent predictor of mortality in hemodialysis patients. Material and methods. This prospective observational study enrolled 183 patients undergoing maintenance hemodialysis. HRQOL was measured annually 2004–2008 using a generic Short Form 36 questionnaire. Physical component summary (PSC) and mental component summary (MSC) scores were calculated. The change of the patient’s HRQOL over time was calculated as a difference between SF-36 scores of the first and the last HRQOL measurements. Results. The median follow-up was 48 months (range, 1–72 months). Cutoff values for HRQOL predicting mortality for PSC score was ≥35 and for MSC score was ≥45. In the model adjusted for age, sex, dialysis months, creatinine, albumin and hemoglobin levels, mortality risk decreased by 0.96 (95% CI, 0.95–0.99) for 1-point increase in the baseline PSC score and decreased by 0.97 (95% CI, 0.95–0.98) for 1-point increase in the baseline MSC score. A 1-point decline in the PSC score (relative risk, 1.11; 95% CI, 1.008–1.221) and MSC score (relative risk, 1.07; 95% CI, 1.002–1.149) over the period of follow-up were associated with a significant additional increase in mortality. Conclusions. Both baseline HRQOL and decline of HRQOL are independent predictors of mortality in hemodialysis patients.

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Changes in health-related quality of life among patients with coronary artery disease: a 2-year follow-up

Medicina ◽

10.3390/medicina46120118 ◽

2010 ◽

Vol 46 (12) ◽

pp. 843 ◽

Cited By ~ 9

Author(s):

Margarita Staniūtė ◽

Julija Brožaitienė

Keyword(s):

Quality Of Life ◽

Older Patients ◽

Treatment Method ◽

Effect Sizes ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

Over Time

The aim of this study was to evaluate the changes in health-related quality of life in patients with coronary heart disease according to age, gender, and treatment method. Material and methods. The study enrolled 167 patients after acute myocardial infarction (MI), percutaneous transluminal coronary angioplasty (PTCA), and coronary artery bypass grafting (CABG). The mean age was 59.3 years; there were 71.9% of males. General health-related quality of life was measured using the SF-36 questionnaire. Patients were examined at the beginning of rehabilitation and after 6-, 12-, 18-, and 24-month follow-up. Effect sizes were computed to assess the changes in health-related quality of life over time. Results. Health-related quality of life significantly improved at 6 months, but improvements did not continue over time. The largest effect size was seen in the pain domain. Effect sizes were greater in the physical health domains among male patients and among female patients in the mental health domain. With regard to age, effect sizes were greater in the physical functioning domain among older patients. With regard to treatment method, at baseline, the CABG patients had the poorest healthrelated quality of life; however, the largest effect sizes were seen in this group. Conclusions. Health-related quality of life improved over 2 years; the greatest improvement was seen at 6 months. Males better improved on the physical component summary domain; there was no significant improvement in the mental component summary domain in males and females. Older patients improved better on the physical activity and physical component summary domains. Changes in health-related quality of life were related to treatment method.

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A Prospective Longitudinal Study of Health-Related Quality of Life and Psychological Wellbeing after an Implantable Cardioverter Defibrillator in Patients with Genetic Heart Diseases

10.1101/2021.04.26.21256086 ◽

2021 ◽

Author(s):

Lieke M. van den Heuvel ◽

Tanya Sarina ◽

Joanna Sweeting ◽

Laura Yeates ◽

Kezia Bates ◽

...

Keyword(s):

Psychological Functioning ◽

Heart Diseases ◽

Health Related Quality ◽

Cardioverter Defibrillator ◽

Related Quality ◽

Health Related ◽

Genetic Heart Disease ◽

Over Time

ABSTRACTBackgroundGenetic heart diseases often affect young people, can be clinically heterogeneous and pose an increased risk of sudden cardiac death (SCD). The implantable cardioverter defibrillator (ICD) is a lifesaving therapy. Impacts on prospective and long-term psychological and health-related quality of life (HR-QoL) after ICD implant in patients with genetic heart diseases are unknown. We investigate the psychological functioning and HR-QoL over time in patients with genetic heart diseases who receive an ICD, and identify risk factors for poor psychological functioning and HR-QoL.MethodsA longitudinal, prospective study design was used. Patients attending a specialised clinic and diagnosed with a genetic heart disease, for which they received an ICD between May 2012 and January 2015, were eligible. Baseline surveys were completed prior to ICD implantation with five-year follow-up after ICD implant. We measured psychological functioning (Hospital Anxiety Depression Scale, Florida Shock Anxiety Scale), HR-QoL (Short-Form 36v2) and device acceptance (Florida Patient Acceptance Scale).ResultsThere were 40 patients with an inherited cardiomyopathy or arrhythmia syndrome included (mean age 46.3 ± 14.2 years; 65.0% males). Mean psychological and HR-QoL measures were within normative ranges during follow-up. After 12 months, 33.3% and 19.4% of participants showed clinically elevated levels of anxiety and depression, respectively. Longitudinal mixed effect analysis showed significant improvements from baseline to first follow-up for the overall cohort, with variability increasing after 36 months. Low education and female gender predicted worse mental HR-QoL and anxiety over time, while comorbidities predicted depression and worse physical HR-QoL.ConclusionWhile the majority of patients with a genetic heart disease adjust well to their ICD implant, a subset of patients’ experience poor psychological and HR-QoL outcomes.

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OS7.1 Impact of the addition of Rituximab to standard therapy with high dose methotrexate on health-related quality of life in primary central nervous system lymphoma patients

Neuro-Oncology ◽

10.1093/neuonc/noz126.044 ◽

2019 ◽

Vol 21 (Supplement_3) ◽

pp. iii13-iii14 ◽

Cited By ~ 1

Author(s):

M van der Meulen ◽

L Dirven ◽

K Bakunina ◽

M J B Taphoorn ◽

M J van den Bent ◽

...

Keyword(s):

Quality Of Life ◽

Central Nervous System ◽

Central Nervous System Lymphoma ◽

Health Related Quality ◽

Standard Chemotherapy ◽

Related Quality ◽

Health Related ◽

Over Time

Abstract BACKGROUND Data on the impact of treatment with Rituximab on health-related quality of life (HRQoL) in primary central nervous system lymphoma (PCNSL) patients are scarce. To determine the net clinical benefit of a new treatment, analyzing the effect on HRQoL is warranted. MATERIAL AND METHODS Patients from a phase III trial (HOVON 105/ ALLG NHL 24), randomized to standard chemotherapy with or without Rituximab, were asked to fill in the EORTC QLQ-C30 and QLQ-BN20 questionnaires before and during treatment, and up to 2 years follow-up or progression. Five predetermined scales were selected for primary analyses: global health status (GH), role (RF) and social functioning (SF), fatigue (FA), and motor dysfunction (MD). A difference ≥10 points was defined as clinically relevant. Cross-sectional analyses were performed comparing changes in HRQoL scores from baseline between the two arms at 12 and 24 months after treatment. Effect of whole brain radiotherapy (WBRT) was analyzed in irradiated patients only. Differences in HRQoL over time between the treatment arms, i.e. the primary outcome, were assessed using linear mixed models (LMM). RESULTS 175/199 patients completed at least one HRQoL questionnaire, and compliance was >60% at all evaluation points. Median age was 61 (IQR 55–66), 74% had a WHO performance score <2, and 38% received WBRT, similar to the total trial population. HRQoL scores on all five scales were significantly and to a clinically relevant extent improved at 12 and 24 months follow-up when compared to baseline in both arms (range: 11.6–42.4), except for FA and MD at 12 months (both -7.2). Differences in HRQoL changes from baseline to 12 and 24 months between the two arms were not statistically significant (range: 3.6–10.9). In the irradiated patients (n=52), HRQoL scores remained stable up to 24 months compared to shortly after WBRT for GH, SF, FA and MD (range -8.1 - 7.6). A clinically relevant and statically significant improvement was seen in RF for both arms at 12 and 24 months compared to ‘after WBRT’(range: +16.7 - +22.2). After correction for multiple testing, LMM analyses showed no statistically significant and clinically relevant differences between the arms for any of the scales over time (range: -3.8 to +4.0). CONCLUSION Treatment resulted in improved HRQoL, but the addition of Rituximab to standard chemotherapy did not further impact HRQoL over time. WBRT did not result in deterioration of HRQoL up to 2 years of follow-up.

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Health, Wellbeing, and Prognosis of Australian Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Case-Controlled Follow-Up Study

Journal of Clinical Medicine ◽

10.3390/jcm10163603 ◽

2021 ◽

Vol 10 (16) ◽

pp. 3603

Author(s):

Elisha K. Josev ◽

Rebecca C. Cole ◽

Adam Scheinberg ◽

Katherine Rowe ◽

Lionel Lubitz ◽

...

Keyword(s):

Quality Of Life ◽

Diagnostic Criteria ◽

Early Years ◽

Psychological Wellbeing ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

Over Time

Background: The purpose of this study was to follow-up an Australian cohort of adolescents newly-diagnosed with ME/CFS at a tertiary paediatric ME/CFS clinic and healthy controls over a mean period of two years (range 1–5 years) from diagnosis. Objectives were to (a) examine changes over time in health and psychological wellbeing, (b) track ME/CFS symptomatology and fulfillment of paediatric ME/CFS diagnostic criteria over time, and (c) determine baseline predictors of ME/CFS criteria fulfilment at follow-up. Methods: 34 participants aged 13–18 years (25 ME/CFS, 23 controls) completed standardised questionnaires at diagnosis (baseline) and follow-up assessing fatigue, sleep quality and hygiene, pain, anxiety, depression, and health-related quality of life. ME/CFS symptomatology and diagnostic criteria fulfilment was also recorded. Results: ME/CFS patients showed significant improvement in most health and psychological wellbeing domains over time, compared with controls who remained relatively stable. However, fatigue, pain, and health-related quality of life remained significantly poorer amongst ME/CFS patients compared with controls at follow-up. Sixty-five percent of ME/CFS patients at baseline continued to fulfil ME/CFS diagnostic criteria at follow-up, with pain the most frequently experienced symptom. Eighty-two percent of patients at follow-up self-reported that they still had ME/CFS, with 79% of these patients fulfilling criteria. No significant baseline predictors of ME/CFS criteria fulfilment at follow-up were observed, although pain experienced at baseline was significantly associated with criteria fulfilment at follow-up (R = 0.6, p = 0.02). Conclusions: The majority of Australian adolescents with ME/CFS continue to fulfil diagnostic criteria at follow-up, with fatigue, pain, and health-related quality of life representing domains particularly relevant to perpetuation of ME/CFS symptoms in the early years following diagnosis. This has direct clinical impact for treating clinicians in providing a more realistic prognosis and highlighting the need for intervention with young people with ME/CFS at the initial diagnosis and start of treatment.

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Stability of health-related quality of life and morbidity burden from 18 months after diagnosis of prostate cancer: results of a UK-wide population-based outcome cohort

Supportive Care in Cancer ◽

10.1007/s00520-021-06650-7 ◽

2021 ◽

Author(s):

Samantha J. Mason ◽

Amy Downing ◽

Sarah Wilding ◽

Luke Hounsome ◽

Penny Wright ◽

...

Keyword(s):

Quality Of Life ◽

Prostate Cancer ◽

Health Related Quality ◽

Morbidity Burden ◽

Related Quality ◽

Health Related ◽

Self Assessed Health ◽

Over Time

Abstract Objective To evaluate the dynamic nature of self-reported health-related quality of life (HRQL) and morbidity burden in men diagnosed with prostate cancer, we performed a follow-up study of the Life After Prostate Cancer Diagnosis (LAPCD) study cohort 12 months after initial survey. Methods The LAPCD study collected information from 35,823 men across the UK who were 18–42 months post-diagnosis of prostate cancer. Men who were still alive 12 months later were resurveyed. Generic HRQL (EQ-5D-5L plus self-assessed health rating) and prostate cancer-specific outcomes (EPIC-26) were assessed. Treatment(s) received was self-reported. Previously defined clinically meaningful differences were used to evaluate changes in outcomes over time. Results A total of 28,450 men across all disease stages completed follow-up surveys (85.8% response). Of the 21,700 included in this study, 89.7% reported no additional treatments since the first survey. This group experienced stable urinary and bowel outcomes, with good function for most men at both time points. On-going poor (but stable) urinary issues were associated with previous surgery. Sexual function scores remained low (mean: 26.8/100). Self-assessed health ratings were stable over time. The largest declines in HRQL and functional outcomes were experienced by men reporting their first active treatment between surveys. Discussion The results suggest stability of HRQL and most specific morbidities by 18–42 months for men who report no further treatment in the subsequent 12 months. This is reassuring for those with good function and HRQL but re-enforces the need for early intervention and support for men who experience poor 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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Health-Related Quality of Life and Survival in Metastasized Non-Small Cell Lung Cancer Patients with and without a Targetable Driver Mutation

Cancers ◽

10.3390/cancers13174282 ◽

2021 ◽

Vol 13 (17) ◽

pp. 4282

Author(s):

Nicole E. Billingy ◽

Vashti N. M. F. Tromp ◽

Corina J. G. van den Hurk ◽

Annemarie Becker-Commissaris ◽

Iris Walraven

Keyword(s):

Mean Difference ◽

P Value ◽

Health Related Quality ◽

Metastatic Nsclc ◽

Related Quality ◽

Health Related ◽

Nsclc Patients ◽

Over Time

Background: The aim of this study is to compare long-term health-related quality of life (HRQOL) and survival in metastatic NSCLC patients with (M+) and without (M−) a targetable driver mutation. Methods: An observational study was performed within the prospective SYMPRO-lung study (NL7897). HRQOL questionnaires were completed at baseline, 15 weeks, and 6 months. Generalized estimating equations (GEE) were used to assess clinically significant declines in HRQOL (>10 points) over time. Kaplan–Meier survival curves were plotted for both progression-free survival (PFS) and overall survival (OS). Results: 81 metastatic NSCLC patients were included (M+ patients; 16 (20%)). M+ patients had a significantly better global HRQOL (mean difference 12.8, ES 0.61), physical functioning (mean difference 13.4, ES 0.63), and less appetite loss (mean difference 23.1, ES 0.73) at 15 weeks of follow-up compared to M− patients. Patients with a clinically relevant decline in HRQOL at 6 months of follow-up had a significantly shorter PFS (5 months vs. 12 months, p-value < 0.001) and OS (11 months vs. 16 months, p-value 0.002). Conclusions: M− NSCLC patients have less favorable HRQOL over time compared to M+ patients. Furthermore, clinically relevant HRQOL declines over time were significantly associated with worse survival. HRQOL can therefore play an important role in in shaping patients’ expectations of their prognosis.

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A 10 Year Follow-up of Denture Satisfaction and Oral Health-Related Quality of Life with Implant-Retained Mandibular Overdentures

10.21203/rs.3.rs-34916/v1 ◽

2020 ◽

Author(s):

Ghajanaa Mukilvannan ◽

Christian Schriwer ◽

Stein Atle Lie ◽

Einar Berg ◽

Harald Gjengedal

Keyword(s):

Quality Of Life ◽

Oral Health ◽

Outcome Variable ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

Edentulous Patients ◽

Over Time

Abstract Background: This 10-year follow-up study reports denture satisfaction and oral health-related quality of life of edentulous patients treated with two-implant mandibular overdentures. Methods: This is a follow-up of a previous study carried out between 1997 – 2005. Originally, the patients were randomly divided into two groups: one receiving two- implant mandibular overdentures (IODs) and another, relined mandibular dentures (RCDs). The latter group were offered and accepted IODs at two years, which then became another IOD group. The main outcome variable of this study is patient opinion over time of the IODs. The participants completed a self-administered questionnaire containing demographics, 15 variables of denture satisfaction, and 20 questions of the Oral Health-Related Impact Profile (OHIP-20). Comparison between groups were made with Mann-Whitney U-tests for denture variables and T-tests for OHIP-20 variables. Changes over time were analysed with multilevel linear models for denture variables and multilevel ordinal regression analyses for OHIP-20 variables.Results: Of the 54 original participants, 29 responded. Disregarding patients who had died at 10 years, this represented a response rate 76%. In the IOD group, the degree of denture satisfaction and OHIP-20 scores remained high and stable over the 10-years period for all but one variable. The RCD group showed a modest improvement of denture satisfaction and OHIP-20 scores for the first two years. After treatment with IODs, these variables improved at 10 years to the same level as the original IOD group.Conclusions: The positive effect on denture satisfaction and oral health-related quality of life of edentulous patients treated with two-implant mandibular overdenture remains unchanged 10 years after treatment, confirming the advice that this should be the standard treatment for the edentulous mandible. Trial registration: This study was approved by Norwegian Committee for Medical Research Ethics in Norway, Health Region West (2017/618) the 16th of May 2017.

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