OS09.4.A Health-related quality of life in low-grade glioma survivors 26 years after diagnosis

Abstract BACKGROUND Many patients with low-grade gliomas (LGGs) continue to survive for many years, yet little is known about patients’ health-related quality of life (HRQOL) in long-term survivorship. We previously investigated HRQOL in LGG patients diagnosed on average 6 years prior to assessment (T1, N=195) with a follow-up in stable patients on average 12 years after diagnosis (T2, N=65). We present a final follow-up of LGG survivors (T3), now decades after diagnosis. MATERIAL AND METHODS We invited patients who participated in our previous assessment (N=65), regardless of disease status. Patients completed questionnaires to assess HRQOL, fatigue, and depressive symptoms: Short Form-36 Health Survey (SF-36), European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Brain Tumour Module (EORTC BN20), Checklist Individual Strength (CIS), and the Center for Epidemiological Studies Depression Scale (CES-D). Changes over time (T1-T2-T3) on group level and participant level were assessed. RESULTS Of the 65 patients, 18 (27.7%) were deceased, 3 (4.6%) experienced tumour progression to WHO III, 7 (10.8%) declined, and 3 (4.6%) could not be contacted. Thirty-four patients (52.3%) participated. Of these, 2 had missing HRQOL data, with 32 patients included in analysis. Survivors were M=52.0 (sd=11.3) years old and diagnosed M=26.2 (sd=3.7, range 19–35) years prior. On group level, a statistically significant (but not clinically relevant) improvement in mental health (p=0.049), and a clinically relevant (but not statistically significant) decline in emotional role functioning was found. No other group-level changes over time in HRQOL were found. Minimal detectable change in HRQOL scale scores over time was observed in individual participants (28.1% only improvement; 25.0% only decline; 21.9% both improvement and decline) with 25.0% remaining completely stable. At T3, 25.0% of survivors scored above the cut-off for high risk of clinical depression (≥16 CES-D), and 53.1% of survivors classed as severely fatigued (≥35 CIS). CONCLUSION In this cohort of LGG survivors, assessed decades after diagnosis and treatment, HRQOL does not appear to be greatly impacted during survivorship. However, depressive symptoms and fatigue remain relatively common. Findings can help inform patients, their families, and clinicians and can serve as a benchmark for treatment trials evaluating interventions that can have very long-term effects.

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QOLP-05. HEALTH-RELATED QUALITY OF LIFE IN LOW-GRADE GLIOMA SURVIVORS 26 YEARS AFTER DIAGNOSIS

Neuro-Oncology ◽

10.1093/neuonc/noab196.726 ◽

2021 ◽

Vol 23 (Supplement_6) ◽

pp. vi183-vi183

Author(s):

Florien Boele ◽

Jaap Reijneveld ◽

Philip de Witt Hamer ◽

Hinke van Thuijl ◽

Pieter Wesseling ◽

...

Keyword(s):

Quality Of Life ◽

Low Grade ◽

Group Level ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

Over Time

Abstract BACKGROUND Patients with low-grade gliomas (LGGs) often survive for many years, yet little is known about patients’ health-related quality of life (HRQOL) in long-term survivorship. We previously investigated HRQOL in LGG patients diagnosed on average 6 years prior to assessment (T1, N=195) with a follow-up in stable patients on average 12 years after diagnosis (T2, N=65). We present a final follow-up of LGG survivors (T3), now decades after diagnosis. METHODS Patients completed questionnaires to assess HRQOL (Short Form-36 Health Survey; EORTC-BN20), fatigue (Checklist Individual Strength (CIS)), and depressive symptoms (Center for Epidemiological Studies-Depression Scale (CES-D)). Changes over time (T1-T2-T3) on group level and participant level were assessed. RESULTS Of the 65 patients approached, 18 (27.7%) were deceased, 3 (4.6%) experienced tumour progression to WHO III, 7 (10.8%) declined, and 3 (4.6%) could not be contacted. Thirty-four patients (52.3%) participated (missing HRQOL data N=2; N=32 included in analysis). Survivors were M=52.0 (sd=11.3) years old and diagnosed M=26.2 (sd=3.7, range:19-35) years prior. On group level, a statistically significant (but not clinically relevant) improvement in mental health (p=0.049), and a clinically relevant (but not statistically significant) decline in emotional role functioning was found. Minimal detectable change in HRQOL scale scores over time was observed in individual participants (28.1% only improvement; 25.0% only decline; 21.9% both improvement and decline) with 25.0% remaining completely stable. At T3, 25.0% and 53.1% of survivors scored above the cut-off for high risk of depression (≥16 CES-D) and severe fatigue (≥35 CIS), respectively. CONCLUSION In LGG survivors, assessed decades after diagnosis and treatment, HRQOL does not appear to be greatly impacted during survivorship. However, depressive symptoms and fatigue remain relatively common. Findings can help inform patients, their families, and clinicians and can serve as a benchmark for treatment trials evaluating interventions that can have very long-term effects.

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Health-Related Quality of Life in Stable, Long-Term Survivors of Low-Grade Glioma

Journal of Clinical Oncology ◽

10.1200/jco.2014.56.9079 ◽

2015 ◽

Vol 33 (9) ◽

pp. 1023-1029 ◽

Cited By ~ 40

Author(s):

Florien W. Boele ◽

Linda Douw ◽

Jaap C. Reijneveld ◽

Rianne Robben ◽

Martin J.B. Taphoorn ◽

...

Keyword(s):

Quality Of Life ◽

Stable Disease ◽

Low Grade ◽

Sf 36 ◽

Related Quality ◽

Long Term Follow Up ◽

Health Related

Purpose Patients with low-grade glioma (LGG) often experience long periods of stable disease, emphasizing the importance of maintaining good health-related quality of life (HRQOL). We assessed the changes in HRQOL in long-term survivors of WHO grade I or II astrocytoma, oligodendroglioma, or oligoastrocytoma with clinically and radiologically stable disease. Patients and Methods Patients completed self-report measures of generic HRQOL (Short Form-36 [SF-36]) and disease-specific HRQOL (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire–Brain Cancer Module). Assessments took place at midterm and long-term follow-up, on average 6 and 12 years after histologic diagnosis and initial treatment, respectively. Comparisons between patients with LGG and individually matched healthy controls were made, and change within the patients with LGG was calculated, as was minimal detectable change. Results Although no statistically significant differences between patients with LGG and healthy matched controls were found at midterm follow-up, patients with LGG had worse physical role functioning (P = .004) and general health perceptions (P = .004) than controls at long-term follow-up. Within patients with stable LGG (n = 65), physical HRQOL (the SF-36 physical component summary and the physical functioning subscale) was significantly worse at long-term than at midterm follow-up (both P < .001). Although 48% of patients improved or remained stable on all HRQOL scales, 38.5% of patients experienced detectable decline on one or more scales. Conclusion Although HRQOL remains mostly preserved in the majority of patients with LGG, a subset of patients experience detectable decline on one or more HRQOL scales despite long-term stable disease. For this subgroup, further research is recommended to better aid patients in dealing with the consequences of LGG.

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Quality of life in first-admitted schizophrenia patients: a follow-up study

Psychological Medicine ◽

10.1017/s0033291798008253 ◽

2000 ◽

Vol 30 (1) ◽

pp. 225-230 ◽

Cited By ~ 83

Author(s):

S. PRIEBE ◽

U.-U. ROEDER-WANNER ◽

W. KAISER

Keyword(s):

Quality Of Life ◽

Satisfaction With Life ◽

Group Level ◽

Subjective Quality Of Life ◽

Changes Over Time ◽

Over Time ◽

First Admission

Background. While most studies of quality of life (QoL) in schizophrenia have investigated long-term patients, relatively little is known about QoL early in the illness and how it changes over time. This study was conducted to investigate objective and subjective quality of life in first-admitted schizophrenia patients as compared to patients with long-term schizophrenia, changes between first admission and 9-month follow-up and predictors of changes.Method. Eighty-six patients were examined after first admission and 51 were re-interviewed at follow-up. Results were compared with samples of in-patients and out-patients with long-term schizophrenia. QoL was assessed using a German version of the Lancashire Quality of Life Profile.Results. Although some objective QoL data were more favourable in first-admitted patients, subjective QoL was lower than in each of the other two groups, even when psychopathology and age were controlled for. On a group level, patients showed a slight improvement in subjective QoL, which was not statistically significant. Individual changes over time were not predicted by initial data, but were correlated with changes in anxiety/depression.Conclusion. Subjective QoL appears to be lower in first-admitted schizophrenics than in groups with long-term illness and, on a group level, it changes little within 9 months. On an individual level, changes in depressive symptoms need to be considered when interpreting changes in satisfaction with life.

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Long-term follow-up of mental health, health-related quality of life and associations with motor skills in young adults born preterm with very low birth weight

Health and Quality of Life Outcomes ◽

10.1186/s12955-016-0458-y ◽

2016 ◽

Vol 14 (1) ◽

Cited By ~ 22

Author(s):

Ingrid Marie Husby ◽

Kaia Mølbach-Thellefsen Stray ◽

Alexander Olsen ◽

Stian Lydersen ◽

Marit Sæbø Indredavik ◽

...

Keyword(s):

Quality Of Life ◽

Motor Skills ◽

Very Low Birth Weight ◽

Health Related Quality ◽

Related Quality ◽

Long Term Follow Up ◽

Health Related

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Improved Motor Proficiency and Quality of Life in Youth With Prader–Willi Syndrome and Obesity 6 Months After Completing a Parent-Led, Game-Based Intervention

Pediatric Exercise Science ◽

10.1123/pes.2020-0160 ◽

2021 ◽

pp. 1-9

Author(s):

Daniela A. Rubin ◽

Kathleen S. Wilson ◽

Jared M. Tucker ◽

Diobel M. Castner ◽

Marilyn C. Dumont-Driscoll ◽

...

Keyword(s):

Quality Of Life ◽

Prader Willi Syndrome ◽

Health Related Quality ◽

Fat Percentage ◽

Motor Proficiency ◽

Related Quality ◽

Health Related

Purpose: To determine changes and potential differences in physical activity (PA), gross motor proficiency (MP), and health parameters after a 6-month follow-up (FU) period following participation in a parent-led PA intervention in youth with or without Prader–Willi syndrome (PWS). Methods: About 42 youth with PWS and 65 youth without PWS but with obesity (body fat percentage >95th percentile for age and sex), aged 8–16 years, participated. The intervention included preplanned PA sessions containing playground and console-based video games scheduled 4 days per week for 24 weeks. Families received training and curriculum materials. PA (accelerometry), MP (Bruininks–Oseretsky Test of MP), and health-related quality of life were obtained before (PRE), after completing the intervention (POST), and at FU. Results: There were no significant changes in PA at any time point. At FU and POST, participants showed higher bilateral coordination (PRE = 9.3 [0.4], POST = 11.7 [0.5], and FU = 11.1 [0.6]); speed and agility (PRE = 9.2 [0.4], POST = 10.8 [0.4], and FU = 11.5 [0.5]); and strength (PRE = 8.0 [0.3], POST = 9.2 [0.3], and FU = 9.2 [0.3]) than at PRE. At FU (80.3 [2.1]) and POST (79.8 [1.7]), youth without PWS showed higher health-related quality of life than PRE (75.0 [1.8]). Conclusion: The improvements in MP and health-related quality of life at FU suggest long-term durability of intervention 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

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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Health-Related Quality of Life, Functional Decline, and Long-Term Mortality in Older Patients Following Hospitalisation Due to COVID-19

10.21203/rs.3.rs-150067/v1 ◽

2021 ◽

Author(s):

Marte Walle-Hansen ◽

Anette Ranhoff ◽

Marte Mellingsæter ◽

Marte Wang-Hansen ◽

Marius Myrstad

Keyword(s):

Quality Of Life ◽

Older Patients ◽

Functional Decline ◽

Health Related Quality ◽

Negative Change ◽

Related Quality ◽

Health Related

Abstract Background Older people are particularly vulnerable to severe COVID-19. Little is known about long-term consequences of COVID-19 on health-related quality of life and functional status in older people, and the impact of age in this context. We aimed to study age-related change in health-related quality of life (HR-QoL), functional decline and mortality among older patients six months following hospitalisation due to COVID-19. Methods This was a cohort study including patients aged 60 years and older admitted to four general hospitals in South-Eastern Norway due to COVID-19, from March 1 up until July 1, 2020. Patients who were still alive were invited to attend a six-month follow-up. Change in HR-QoL and functional status compared to before the COVID-19 hospitalisation were assessed using the EuroQol 5-dimensional-5 levels questionnaire (EQ 5D-5L). A change in visual analogue scale (VAS) score of 7 or more was considered clinically relevant. Results Out of 216 patients aged 60 years and older that were admitted to hospital due to COVID-19 during the study period, 171 were still alive 180 days after hospital admission, and 106 patients (62%) attended the six-month follow-up. Mean age was 74.3 years, 27 patients (26%) had experienced severe COVID-19. 57 participants (54%) reported a decrease in the EQ5D-5L VAS score after six months, with no significant difference between persons aged 75 years and older compared to younger. 70 participants (66%) reported a negative change in any of the dimensions of the EQ-5D-5L, with impaired ability to perform activities of daily life (35%), reduced mobility (33%) and having more pain or discomfort (33%) being the most commonly reported changes. 46 participants (43%) reported a negative change in cognitive function compared to before the COVID-19 hospitalisation. Six-month mortality was 21%, and increased with increasing age. Conclusions More than half of the patients reported a negative change in HR-QoL six months following hospitalisation due to COVID-19, and one out of three experienced a persistently impaired mobility and ability to carry out activities of daily living. The results suggest awareness of long-term functional decline in older COVID-19 patients.

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