Quality Of Life Trajectories Research Articles

A Pilot Trial of Patient-Reported Outcomes for Acute Graft-Versus-Host-Disease

Acute graft-versus-host disease (GVHD) is a major cause of morbidity and mortality after allogeneic hematopoietic cell transplantation (HCT). Acute GVHD is associated with severe physical and psychosocial symptoms. We sought to evaluate the feasibility of capturing patient-reported outcome (PRO) measures in acute GVHD to better measure symptom burden and quality of life (QOL). We conducted a pilot study of adult patients undergoing first allogeneic HCT. Questions from Functional Assessment of Cancer Therapy-Bone Marrow Transplantation (FACT-BMT), Patient-Reported Outcomes Measurement Information System (PROMIS-10), and Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) were selected, and the survey was administered electronically before HCT, at days 14, 50, and 100 after HCT. In addition, patients who developed grade 2-4 acute GVHD received it weekly for 4 weeks and then monthly up to 3 months. From 2018 to 2020, 73 patients were consented, of which 66 went on to undergo HCT and were included in the analysis. Median age at transplantation was 63 years, and 92% were Caucasian. Only 47% of expected surveys were completed (range 0%-67% for each time point). Descriptive exploratory analysis demonstrate an expected trajectory of QOL using the FACT-BMT and PROMIS-10 scores throughout transplantation. Patients who developed acute GVHD (N=15) generally had lower QOL scores compared to those with no or mild GVHD post-HCT. The PRO-CTCAE captured several physical and mental/emotional symptoms in all patients and those with GVHD. Fatigue (100%), decreased appetite (92%), problem tasting (85%), loose stools (77%), pain (77%), skin itching (77%), and depression (feeling sad) (69%) were the most prevalent symptoms among patients with grade 2-4 acute GVHD. Patients with acute GVHD generally reported worse symptoms than those with no/mild GVHD in frequency, severity, and interference in normal activities. Several challenges were identified including poor access/literacy of electronic surveys, acute illness, and need for extensive research/resource support. We demonstrate the challenges yet potential of using PRO measures in acute GVHD. We demonstrate that the PROMIS-10 and PRO-CTCAE measures are able to capture several symptoms and QOL domains of acute GVHD. Further investigation into making PROs feasible in acute GVHD are needed.

Knee Injury and Osteoarthritis Outcome Score Trajectories After Primary Total Knee Arthroplasty in United States Veterans.

The volume of total knee arthroplasty (TKA) procedures continues to increase, including among United States (US) veterans, but there is little data characterizing recovery using validated knee-related questionnaires. In this prospective cohort study, we sought to establish the feasibility of longitudinal characterization of recovery after TKA using the validated Knee Injury and Osteoarthritis Outcome Score (KOOS), specifically focusing on two of the KOOS subscales (pain and quality of life (QOL)). We solicited participants who agreed to fill out these knee-related questionnaires preoperatively and 3, 6, and 12 months after discharge following unilateral TKA within the Durham Veterans Affairs Health Care System. We examined rates of prospective completion of the KOOS and face validity of scores at each study time point. We transformed and reported scores on the 0-100 scale, with zero representing significant knee pain or poor QOL and 100 representing no knee pain or good QOL. Of 200 US veterans presenting between May 2017 and 2018, 21 (10.5%) agreed to participate by filling out the KOOS questionnaire longitudinally from before surgery until one year after discharge. All 21 (100%) participants were male and completed the two KOOS subscale questions (pain and QOL) preoperatively. Of those, 16 (76.2%) also completed KOOS at 3 months, 16 (76.2%) at 6 months, and seven (33.3%) at 12 months. Compared to mean preoperative values (pain: 33.47 + 6.78, QOL: 11.91 + 4.99), the KOOS subscale scores had significantly improved by 6 months after TKA (pain: 74.41 + 10.72, QOL: 49.61 + 13.25) but plateaued at 12 months (pain: 74.60 + 20.80, QOL: 50.89 + 20.61). The magnitude of improvement in absolute scores, pain and QOL, was similar and significant at 12 months compared to preoperative values with an increase of 41.13 (p=0.007) and 38.98 (p=0.009), respectively. Primary TKA in US veterans with advanced osteoarthritis may lead to improved patient-reported KOOS pain and QOL subscale measures at 12 months compared to preoperative scores, with the majority of improvement occurring by 6 months. Only one in ten US veterans approached preoperatively agreed to complete the validated knee-related outcomes questionnaire prior to undergoing TKA. About three-quarters of those veterans also completed it both three and six months after discharge. Collected KOOS subscale scores demonstrated face validity and showed substantial improvement in pain and QOL over the six-month postoperative period. Only one in three veterans who completed the KOOS questionnaire preoperatively also completed it at 12 months, but this does not support the feasibility of follow-up assessments beyond 6 months. To better understand longitudinal pain and QOL trajectories in US veterans undergoing primary TKA for advanced osteoarthritis and to improve study participation, additional research using the KOOS questionnaire may add further insights into this underreported population.

Trajectories of Quality of Life among an International Sample of Women during the First Year after the Diagnosis of Early Breast Cancer: A Latent Growth Curve Analysis.

The current study aimed to track the trajectory of quality of life (QoL) among subgroups of women with breast cancer in the first 12 months post-diagnosis. We also aimed to assess the number and portion of women classified into each distinct trajectory and the sociodemographic, clinical, and psychosocial factors associated with these trajectories. The international sample included 699 participants who were recruited soon after being diagnosed with breast cancer as part of the BOUNCE Project. QoL was assessed at baseline and after 3, 6, 9, and 12 months, and we used Latent Class Growth Analysis to identify trajectory subgroups. Sociodemographic, clinical, and psychosocial factors at baseline were used to predict latent class membership. Four distinct QoL trajectories were identified in the first 12 months after a breast cancer diagnosis: medium and stable (26% of participants); medium and improving (47%); high and improving (18%); and low and stable (9%). Thus, most women experienced improvements in QoL during the first year post-diagnosis. However, approximately one-third of women experienced consistently low-to-medium QoL. Cancer stage was the only variable which was related to the QoL trajectory in the multivariate analysis. Early interventions which specifically target women who are at risk of ongoing low QoL are needed.

Quality of Life, Physical Functioning, and Psychological Distress of Older Adults Undergoing Hematopoietic Stem Cell Transplantation

With advances in therapies for hematologic cancers, older adults increasingly undergo hematopoietic stem cell transplantation (HSCT). Older adults may potentially experience an exaggerated burden of toxicity from HSCT. Studies examining the quality of life (QOL), physical functioning, and psychological symptom trajectory for older adults undergoing HSCT are limited. Our primary aim was to describe the trajectory of QOL, physical functioning, and psychological distress of older adults undergoing HSCT. Secondarily, we aimed to compare the trajectory of QOL, physical functioning, and psychological distress of older and younger adults undergoing HSCT and to evaluate factors associated with QOL trajectory in older adults undergoing HSCT. We conducted secondary analyses of two prospective studies conducted at Massachusetts General Hospital. From 2011 to 2016, we enrolled 250 adults undergoing allogeneic or autologous HSCT. Older age was defined as age ≥65 years. We collected patient-reported outcomes (PROs) within 72 hours of admission for HSCT, at hematologic nadir (2 weeks), and at 6 months after HSCT. To assess QOL, physical functioning, and psychological symptoms, we used the Functional Assessment of Cancer Therapy (FACT)–Bone Marrow Transplant, FACT-Trial Outcome Index, and Patient Health Questionnaire–9, respectively. We used the post-traumatic stress disorder (PTSD) Checklist–Civilian Version to assess PTSD symptoms. We fit linear mixed effects models to characterize trajectories of changes in PROs across timepoints and to evaluate baseline factors associated with QOL trajectories in older adults. Overall 30.4% (76/250) of our cohort was 65 years or older. All older adults undergoing allogeneic HSCT received a reduced intensity conditioning regimen. At 2 weeks after HSCT, older patients experienced a decline in QOL (Δ = −16.6, P < .001), physical functioning (Δ = −15.4, P < .001) and an increase in depression symptoms (Δ = 3.8, P < .001). At 6 months after HSCT, QOL (Δ = 1.4, P = .7), physical functioning (Δ = 1.7, P = .5), and depression symptoms (Δ = 0.4, P = .6) recovered to baseline values. At 6 months after HSCT, the proportion of older patients with PTSD symptoms increased from 5.3% (4/76) at baseline to 13.2% (10/76). There was no significant difference in slopes or trajectories of PROs between older and younger patients. In older adults, baseline psychological distress was associated with significantly worse QOL trajectory (Δ= −21.6, P ≤ .001). Older adults experienced a sharp decline in QOL and physical functioning and an increase in depression symptoms within 2 weeks of HSCT hospitalization. Baseline psychological distress was associated with a pronounced worsening in post-HSCT QOL trajectory. These findings underscore the need for supportive care interventions to improve the experience of older adults undergoing HSCT.

Abstract 81: Quality Of Life Trajectory In Stroke Survivors And Their Effect On Caregivers, One Year After Discharged From Rehabilitation Hospitals: A Longitudinal Study

Introduction: A stroke survivor’s Quality of life (QOL) could be associated with the caregiver’s anxiety, depression and burden. The identification of specific trajectories in stroke survivors and their associations with caregivers’ outcomes, would be helpful for developing more tailored interventions for survivors and caregivers within the first year after the stroke onset. The aims of this study were to: identify the distinct trajectories of the stroke specific QOLs of stroke survivors discharged from rehabilitation hospitals; examine the associations between the stroke survivors’ QOL trajectories and the caregivers’ anxiety, depression and burden over time; and identify the predictors of the survivors’ QOL trajectories. Methods: This is a longitudinal, multicentre prospective study. Were recruited 415 stroke survivors and their caregivers, after the patients’ discharge from one of 20 rehabilitation hospitals located in central and southern Italy and were followed up every 3 months for 1 year. Results: Stroke survivors had similar trajectories in the physical dimensions of QOL, unlike psychological dimensions, where emerge two distinct trajectories of change in the QOL stroke survivor. The first trajectory (86%) included those who started with greater levels of QOL and improved slightly to markedly in all psychological domains, with this improvement decelerating over time. The second trajectory (14%) comprised those who started with lower overall levels of psychological QOL and experienced a linear worsening in Memory and Communication and no changes in Emotion and Participation. The impact of the distinct stroke survivors’ QOL trajectories on caregiver variables, such as burden, anxiety, and depression were examined. Caregivers experienced linear decreases in anxiety ( p &lt; .001)during the first year post-stroke, while burden ( p = .086)and depression ( p = .057)did not significantly change over time. Conclusion: Preventing the risk factors of a stroke survivor from causing a deterioration in QOL is a fundamental role in public health. Adopting precautionary strategies, for those who present certain risk factors for survivors’ discharged from rehabilitation hospitals, could lead to an improvement in the burden and depression of the caregiver.

Trajectories of quality of life in breast cancer survivors during the first year after treatment: a longitudinal study

BackgroundAlthough quality of life (QOL) improves over time for most breast cancer patients after their treatment, some patients may show different patterns of QOL. Beyond determining distinct QOL trajectories, identifying characteristics of patients who have different trajectories can help identify breast cancer patients who may benefit from intervention. We aimed to identify trajectories of QOL in breast cancer patients for one year after the end of primary treatment, to determine the factors influencing these changes.MethodsThis longitudinal study recruited 140 breast cancer patients. Patients' QOL, symptom experience, self-efficacy, and social support were assessed using the Functional Assessment of Cancer Therapy Scale-G, Memorial Symptom Assessment Scale-Short Form, Self-Efficacy Scale for Self-Management of Breast Cancer, and Interpersonal Support Evaluation List-12. Data were collected immediately after the end of primary treatment (T1) and at three (T2), six (T3), and 12 months (T4) after primary treatment. Group-based trajectory modeling was used to identify distinct subgroups of patients with similar patterns of QOL change after treatment. A one-way analysis of variance was used to determine which variables were associated with trajectory membership. A multinomial logistic regression was performed to identify factors associated with trajectory group membership.ResultsWe analyzed 124 patients (mean age: 48.75 years). Latent class analysis of the QOL identified three trajectory groups: the low QOL group (n = 27; 21.1%), moderate QOL group (n = 57; 45.3%), and high QOL group (n = 40; 33.6%). The low QOL group showed consistently low QOL after the end of primary treatment, and the moderate QOL group showed a slight decrease in QOL from T1 to T3, which returned to the T1 level at T4. The high QOL group maintained a consistently high QOL. By multinomial logistic regression, psychological symptoms (odds ratio [OR] 0.46, 95% confidence interval [CI] 0.22–0.99) predicted a moderate QOL, and both psychological symptoms (OR 0.19, 95% CI 0.07–0.51) and belonging support (OR 1.60, 95% CI 1.06–2.39) predicted a high QOL.ConclusionIdentifying high-risk groups for reduced QOL after the end of primary treatment is necessary. Moreover, psychosocial interventions should be provided to alleviate psychological symptoms and increase belonging support to enhance patients' QOL.Trial registration Not registered.

Quality of Life in Patients with Chronic Kidney Disease Managed with or without Dialysis: An Observational Study

Emerging research suggests that quality of life (QOL) outcomes, such as maintenance of independence, rather than length of life, are the main priority for many patients with end stage kidney disease (ESKD). There is therefore a need to focus on whether QOL for older patients on dialysis differs significantly from conservative kidney management (CKM). This study aimed to describe the QOL trajectory for patients with ESKD, comparing CKM to dialysis and transplantation. This retrospective, observational study included all patients who attended the Kidney Supportive Care Clinic at St. George Hospital and had one or more EuroQOL (EQ5D5L) questionnaires between July 2014 and May 2020. Kruskal-Wallis tests compared QOL scores between groups at baseline and 12 months. Wilcoxon signed rank tests compared QOL scores from baseline to 18 months within groups. Chi-squared tests compared proportions of patients reporting problems with QOL "domains" between the groups at baseline and 12 months. McNemar's tests compared changes in proportions of patients reporting problems with QOL "domains" within groups from baseline to 12 months. A total of 604 patients had an initial survey. At baseline, patients who were managed conservatively reported more problems with mobility, self-care, and ability to perform usual activities. However, pain/discomfort and anxiety/depression were no higher in the conservative population. CKM patients reported no significant decline in mobility, self-care, ability to perform their usual activities, pain/discomfort, or anxiety/depression after 12 months or in QOL scores after 18 months compared with the other groups. QOL scores or symptom burdens did not change significantly in patients receiving CKM compared with dialysis, suggesting that appropriately supported CKM can maintain patients' QOL.

Symptom Distress and Quality of Life in Women With Newly Diagnosed Ovarian Cancer Undergoing Chemotherapy: A Longitudinal Approach.

Women with newly diagnosed ovarian cancer who receive chemotherapy experience distressing symptoms and reduced quality of life (QOL). Previous study results identifying changes in symptom distress and QOL over time are limited. This study examined the trajectory of symptom distress and QOL among women with newly diagnosed ovarian cancer from before their first chemotherapy appointment to two weeks after completing six cycles of chemotherapy. A longitudinal design was used to examine symptom distress and QOL in 36 participants across eight time points. Generalized estimating equation analyses identified how participants' symptom distress and QOL changed over time. Psychological symptom distress was highest at baseline and then decreased. Physical symptom distress increased at the second chemotherapy cycle. Similar results were found for QOL, with the lowest QOL reported after the fifth cycle.

Novel Data Analytics Identify Predictors of Quality-of-Life Trajectories in Patients with AML or High-Risk Myeloid Neoplasms

Background: Acute myeloid leukemia (AML) remains fatal in most patients (pts) with a 5-year survival probability of approximately 30% (less than 10% in pts aged 65 or older). Beyond survival, quality of life (QOL) can be significantly impaired by both disease and treatment-related factors. There is an urgent need to both characterize and identify factors predictive of QOL trajectories. Leveraging prospective data from 503 pts enrolled on an observational clinical trial, we implemented a novel statistical approach using non-supervised longitudinal clustering and ordinal logistic regression. We successfully identified: i) distinct QOL trajectories, ii) baseline factors independently associated with QOL trajectories. Methods: We analyzed data from pts with AML (90%) or high-risk myelodysplastic, myeloproliferative syndrome, or myelofibrosis (10%) enrolled on an observational clinical trial (NCT01929408) between 2013 and 2017 at 13 centers. QOL questionnaires were collected at the time of enrollment and approximately at months 1, 3, 6, 9, 12, 18, and 24 after study enrollment. Pts with a least six longitudinal data points available for QOL were included (n=503). Missing QOL data were imputed using linear interpolation. QOL was evaluated using the visual analog scale of the EQ5D (0, worst imaginable health state; 100, best imaginable health state). Deceased pts were considered to have a QOL of 0. Disease risk was assessed using the ELN 2017 criteria. Comorbidities and frailty were measured using the hematopoietic cell transplant comorbidity index (HCT-CI) and the NIH Toolbox 4-Meter Walk Gait Speed Test, respectively. QOL trajectories were clustered using non-supervised k-means based on Euclidian distances (TimeSeriesKMeans function of the tslearn library). Optimal cluster number was determined using the silhouette plot approach. Multivariable ordinal logistic regression was applied to predict QOL trajectories as a function of baseline variables using the rms R package. All analyses were done in Python (3.5) or R (4.0.2). Results: Six distinct QOL trajectories could be clustered and ordered from very good (n=109, 22%), good (n=76, 15%), intermediate 1 (n=49, 10%), intermediate 2 (n=86, 17%), poor (n=88, 17%), and very poor (n=95, 19%), as shown in the Figure. Comparisons of extreme clusters showed that pts in the very good QOL trajectory group were at baseline significantly younger (median age, 60 versus 66, respectively, p<0.001), had fewer comorbidities (median HCT-CI, 2 versus 4, respectively, p<0.001), less adverse AML cytogenetic/molecular risk (26% versus 48%, respectively, p=0.004), and were less frail (median walking speed, 0.89 versus 0.69m/s, p=0.009) compared to those in the very poor QOL trajectory group. A higher proportion of very good QOL pts received intensive chemotherapy (91% versus 62%, p<0.001) followed by consolidative allo-HCT (68% versus 11%, p<0.001) after achieving complete response/complete response with incomplete hematologic recovery (94% versus 40%, p<0.001). Multivariable modeling including baseline variables showed that older age (OR per 1-year increase, 1.34; 95%CI, 1.09-1.66; p=0.006), higher HCT-CI (OR per 1-unit increase, 1.66; 95%CI, 1.27-2.16; p<0.001), and frailty (OR per m/s increase, 0.8; 95%CI, 1.09-1.66; p=0.06) were associated with worse QOL trajectories. Favorable disease risk (favorable versus adverse: OR, 0.45; 95%CI, 0.28-0.71; p<0.001) and intensive therapy (OR, 0.54; 95%CI, 0.36-0.83; p=0.004) were independently associated with more favorable QOL trajectories. Conclusion: Unsupervised k-means clustering identified groups of pts with distinct QOL trajectories. Multivariable ordinal regression identified age, HCT-CI, disease risk and treatment intensity as independently associated with QOL trajectories. Favorable QOL trajectories were more likely to be achieved in younger, non-comorbid pts with favorable disease risk and receiving intensive therapy. Intensive therapy was independently associated with more favorable QOL trajectories even in older pts and in those with higher comorbidity burden. Probabilities of achieving the most favorable QOL trajectory in pts aged ≥60 after intensive therapy were <40% (<25% in case of adverse disease risk), indicating a critically unmet need to improve outcomes in older pts with high-risk myeloid neoplasms. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal

Quality of Life Trajectories in Patients Treated with R-CHOP for Diffuse Large B-Cell Lymphoma As Part of the Remodl-B Trial (ISRCTN 51837425)

Introduction: The combination treatment of rituximab, cyclophosphamide, doxorubicin, vincristine, and prednisolone (R-CHOP) became the standard of care first-line treatment for diffuse large B-cell lymphoma (DLBCL) almost 20 years ago. R-CHOP can have both short-term and long-term effects that negatively impact quality of life (QoL), though there is a paucity of research in this area. The phase III REMoDL-B study (ISRCTN 51837425) evaluated the addition of bortezomib to standard R-CHOP therapy in patients with newly diagnosed DLBCL. While the primary endpoint was not met for the study as a whole, follow-up data suggests that bortezomib may benefit some molecular sub-groups. In this secondary analysis of the REMoDL-B study we assessed the impact of R-CHOP on QoL in patients enrolled in the control arm of the study, with 5 years of follow-up. Methods: QoL was assessed using EORTC QLQ-C30 version 3.0 and the EORTC chemotherapy-induced peripheral neuropathy module (QLQ-CIPN20). Assessments were performed for patients alive and without progressive disease at the beginning of each treatment cycle, at the end of treatment, and thereafter at months 3, 6, 9, 12, 18, 24, 36, 48 and 60. Two different outcomes from QLQ-C30 were investigated, QL1 and QL2 summary scores, with higher scores reflecting better health-related QoL. Linear mixed models were constructed with responses at each time point nested within participants and a random slope fitted for the effect of time. These models estimated change from baseline for both QL1 and QL2. Results: 617 patients were enrolled into the R-CHOP control arm of the study. Patients whose gene expression profiling failed (n=158) were not asked to complete QoL questionnaires and were excluded from the QoL analysis. 449/459 patients completed at least one QoL questionnaire to the extent that a QL1/QL2 score could be calculated. The mean QL1 score was 72.8 at baseline and 86.3 at month 60, whilst the mean QL2 scores were 57.9 and 77.1 respectively, indicating that longer term QoL is not negatively impacted by R-CHOP treatment in those who remain alive and disease-free after 5 years of follow-up. It is notable that QL1/QL2 scores increase as DLBCL regresses during the early cycles of R-CHOP treatment and then drop again in the latter cycles of treatment due to accumulation of chemotherapy toxicity. However, QL1/2 scores remain significantly better than baseline levels (Figures 1 and 2), suggesting symptoms from the disease itself have a greater negative impact on QoL than R-CHOP treatment. Factors significantly associated with higher QoL across all timepoints of the study included older age, male gender, completion of R-CHOP treatment, and stage II-IV disease. Lower QoL amongst those with stage I disease is not entirely clear, though may be partially explained by the small stage I patient numbers in this group (n=12). Factors significantly associated with lower QoL across all timepoints of the study were the presence of B-symptoms and an IPI score of ≥2 at diagnosis. From the QLQ-CIPN20, the mean score for sensory symptoms increased from 5 at baseline to 14 at the end of treatment, with higher scores representing increased symptomatology. At month 60 the mean score remained at 11, indicating a high level of persistent sensory neuropathy following R-CHOP chemotherapy. Conclusion: These results suggest that longer term QoL is not adversely affected by R-CHOP treatment in those who remain alive and disease-free after 5 years of follow-up. Symptoms from the disease itself appear to have a greater negative impact on QoL than R-CHOP treatment. These QoL results serve as a baseline for the assessment of novel interventions in patients receiving induction therapy for DLBCL. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal

Dynamic Trajectory of a Patient-Reported Outcome and Its Associated Factors for Patients with Chronic Heart Failure: A Growth Mixture Model Approach.

This study aimed to identify subgroups of chronic heart failure (CHF) patients with distinct trajectories of quality of life (QOL) and to identify baseline characteristics associated with the trajectories. Two-year, prospective, cohort study including 315 patients with CHF was conducted from July 2017. Information on QOL assessed by CHF-patient-reported outcomes measure (CHF-PROM) was collected at baseline, 6, 12, 18, and 24 months. Demographic and clinical variables were recorded at baseline. Growth mixture model was used to identify distinct trajectories of CHF-PROM and its physical, psychological, social, and therapeutic domains. Single factor analysis was employed to assess the factors associated with development of CHF-PROM over time. Two classes of overall score of CHF-PROM were identified: poorer (14.0%) and better (86.0%). Poorer class tended to be aged, have low diastolic blood pressure, have concomitant atrial fibrillation, diabetes, chronic obstructive pulmonary disease, cancers, and central nervous system diseases, and used nitrates. Three classes of physical scores were identified: unstable-poorer (5.2%), stable-poorer (29.4%) and better (65.4%). Age, NYHA grade, chronic obstructive pulmonary disease, combined with cancers and central nervous system diseases were related to the grouping. Poorer (8.6%) and better (91.4%) classes of psychological scores were identified. Poorer class tended to be female and had concomitant atrial fibrillation. Degenerate class (34.6%) and meliorate class (65.4%) of therapeutic scores were identified. Degenerate class tended to have concomitant chronic obstructive pulmonary disease and use less angiotensin converting enzyme inhibitors. We identified different classes with distinct trajectories of QOL that may help proper evaluate QOL and further improve its status for patients CHF.

192 CONNECTED HEALTH SUSTAINING HOME STAY IN DEMENTIA (CHESS): 12-MONTH TRAJECTORY OF QUALITY OF LIFE IN PEOPLE WITH DEMENTIA

Abstract Background Research is needed to examine how Quality of Life (QoL) changes as dementia progresses. We explored QoL trajectories over a 12-month period and examined factors that influence QoL in People with Dementia (PwD). Methods Fifty-two PwD and their informal caregivers participated in the “CHESS” Study. Data were collected at five time points over 12 months between April 2017 and November 2019. Mixed-model analyses were used to investigate associations of self-rated QoL and caregiver-rated QoL (measured by the DEMQoL and DEMQoL Proxy, respectively) with factors in four domains: 1) Psychological Well-Being (PWB; measures of anxiety and depression); 2) Social Capital and Resources (SCR; incorporating access to community-based health services, education level, occupation and living situation of the PwD, employment status of the caregiver); 3) Physical Fitness and Health (PFH; including the Quantitative Timed Up and Go (QTUG), baseline grip strength, indices of frailty, sensory acuity); and Managing Everyday life with Dementia (MED; incorporating measures of cognition, behavioural disturbances, functional ability, indices of dependence of PwD). Results Across all domains, caregivers’ ratings of QoL for PwD decreased over time (p=0.012). In PWB, greater levels of depression (p=0.007) and anxiety in the PwD (p&amp;lt;0.001) predicted lower self-rated QoL, and higher caregiver anxiety levels predicted lower caregiver-rated QoL (p=0.012). In PFH, having a caregiver administer medication (p=0.03) was associated with higher self-rated QoL. Interestingly, caregiver-rated QoL was higher for PwD who took longer to return to sitting during the QTUG (p=0.043). In MED, being independently mobile (p=0.012) predicted higher self-rated QoL. No other factors within the SCR domain reached significance in predicting QoL. Conclusion This longitudinal analysis elucidates potential predictors of QoL in PwD. Psychological well-being in PwD and their caregivers was shown to significantly impact on QoL, and so, these factors should be routinely included in future research studies and clinical assessments.

Association of Baseline Symptom Burden and Survival among Patients with Brain Metastases at a Tertiary Cancer Center

<h3>Purpose/Objective(s)</h3> Brain metastases (BrM) commonly affect patients with solid malignancies and often correlate with significant symptomatology that profoundly impacts patients' quality of life (QOL). As systemic therapies increasingly improve extracranial disease control but lag in intracranial efficacy, a rising incidence of BrM persists. Thus, an urgent need exists to characterize the most common symptoms associated with BrM and to correlate these symptoms with survival. <h3>Materials/Methods</h3> We identified patients who received radiation therapy (RT) within 30 days of BrM diagnosis at a tertiary cancer center between 2017-2020 who prospectively completed the MD Anderson Symptom Instrument-Brain Tumor questionnaire (a validated instrument among patients with BrM for evaluation of 22 symptoms and 6 interference measures linked to daily functioning). Symptom severity score (range 0-10, with higher scores indicating more severe symptomatology) and interference score (range 0-10, with higher scores indicating greater compromise of activity-related/affective function), were compared via t-test or ANOVA by: age (>65 vs. ≤65), sex, Karnofsky performance status (KPS) (high, 90-100 vs. low, <90), Charlson co-morbidity index (CCI) (high, >2 vs. low, 0-2), primary tumor type (lung, breast, melanoma, other), and initial intracranial treatment strategy (surgical resection, stereotactic RT, or whole brain RT). Overall survival (OS) was assessed via Cox regression with the above co-variates; symptom severity and interference were evaluated in separate Cox models. <h3>Results</h3> A total of 101 patients were identified (median age=67 years, female=60%, primary lung cancer=45%). Mean symptom severity and interference scores at time of BrM diagnosis were 2.4 and 3.4, respectively. The most common severe (defined as a score >4) symptoms were: fatigue (47%), distress (40%), sleep disturbances (37%), drowsiness (35%), and sadness (32%). The most common high (score>4) interference measures were: enjoyment of life (47%), ability to work (44%), and walking (35%). Higher symptom severity was more common among females than males (2.8 vs 1.8, respectively; p=0.01); there were no significant differences in mean symptom severity or interference scores by age, KPS, CCI, or initial BrM treatment strategy. On Cox regression, higher symptom severity and higher interference scores were associated with worse OS (HR 1.30 per 1-point increase [95% CI, 1.11-1.51], p<0.001; and HR 1.18 per 1-point increase [95% CI 1.07-1.30], p=0.001, respectively); age, KPS, CCI, and other co-variates were not significantly associated with OS. <h3>Conclusion</h3> High symptom and interference burden is common among patients with BrM and associated with worse survival. Further work should investigate how improving symptoms, such as through palliative care interventions, may impact QOL trajectories and survival among the BrM patient population.

Association between functional limitation and quality of life among older adults with multimorbidity in Luxembourg

Abstract Introduction Multimorbidity, defined as the co-existence of two or more chronic conditions, is affecting an increasing number of Europeans, leading to poorer quality of life (QoL). This study assessed how functional limitation affects the QoL trajectories in a cohort of older individuals having multimorbidity, and whether there are any gender differences in these effects. Methods We used a longitudinal cohort of 906 multimorbid respondents 50 years of age or older from Luxembourg who participated in four waves of the Survey of Health, Ageing, and Retirement in Europe (2013-2020). We used the Control, Autonomy, Self-Realization, and Pleasure scale (CASP-12) to assess QoL and the Global Activity Limitation Indicator (GALI) to measure functional limitation. Multigroup latent growth curve (LGC) modeling techniques were employed to assess how the measures of functional limitation over time are related to QoL trajectories and whether or not these effects are different by sex. Results In 2013, over 60% of older residents of Luxembourg were affected by multimorbidity. The results from the LGC models suggest that both men and women with multimorbidity experienced a statistically significant decline in QoL between 2013 and 2020 at a constant rate; there were no significant differences in the rate of this change between men and women. The level of QoL at baseline and over time was significantly lower for individuals reporting functional limitation. However, functional limitation had no significant impact on the rate of decline in QoL for both men and women. Discussion and conclusions As an increasing number of individuals in Europe are becoming vulnerable to more years lived with multiple chronic conditions, there is a growing need to identify factors that may lead to improvements in QoL among people affected by multimorbidity. Gaining more knowledge on the role of functional limitation may be particularly important for planning comprehensive care for patients with multimorbidity.

Adult quality of life patterns and trajectories during the COVID-19 pandemic in Germany.

Early investigations of subjective well-being responses to the COVID-19 pandemic indicated average deterioration but also high variability related to vulnerability of population groups and pandemic phase. Thus, we aimed to gain new insights into the characteristics of certain groups and their differences in subjective well-being response patterns over time. First, we performed Latent Class Analyses with baseline survey data of 2,137 adults (mean age = 40.98, SD = 13.62) derived from the German CORONA HEALTH APP Study to identify subgroups showing similarity of a comprehensive set of 50 risk and protective factors. Next, we investigated the course of quality of life (QoL) as an indicator of subjective well-being grouped by the identified latent classes from July 2020 to July 2021 based on monthly and pandemic phase averaged follow-up survey data by means of Linear Mixed-Effects Regression Modeling. We identified 4 latent classes with distinct indicators and QoL trajectories (resilient, recovering, delayed, chronic) similar to previous evidence on responses to stressful life events. About 2 out of 5 people showed a resilient (i.e., relative stability) or recovering pattern (i.e., approaching pre-pandemic levels) over time. Absence of depressive symptoms, distress, needs or unhealthy behaviors and presence of adaptive coping, openness, good family climate and positive social experience were indicative of a resilient response pattern during the COVID-19 pandemic. The presented results add knowledge on how to adapt and enhance preparedness to future pandemic situations or similar societal crises by promoting adaptive coping, positive thinking and solidary strategies or timely low-threshold support offers.Supplementary InformationThe online version contains supplementary material available at 10.1007/s12144-022-03628-4.

Utilising quality of life outcome trajectories to aid patient decision making in pelvic exenteration

BackgroundShared decision-making in pelvic exenteration is a complex and detailed process, which must balance clinical, oncological and patient-reported outcomes (PROs), whilst addressing and valuing the patient priorities. Communicating patient-centred information on quality of life (QoL) and functional outcomes is an essential component of this. The aim of this systematic review was to understand the impact of pelvic exenteration on QoL PROs over a longitudinal period and to develop QoL trajectories to support decision-making in this context. MethodsMEDLINE, Embase and Web of Science databases were searched between 1st January 2000 and 20th December 2021 Studies reporting on PROs, including QoL, in adults undergoing pelvic exenteration were included. Risk of bias was assessed using the ROBINS-I assessment tool. Data from studies reporting QoL using the same outcome measure at the same candidate timepoint were extracted and synthesised to develop a longitudinal QoL trajectory. ResultsFourteen studies consisting of 1370 patients were included in this review. QoL trajectories were constructed in the domains of physical function, psychological function, role function, sexual function, body image and general and specific symptoms. Decision-making was only assessed by one study, with satisfaction with decision-making reported to be high. There is an initial decline in QoL scores in the domains of physical function, role function, sexual function, body image and general health and symptoms deteriorating during the first 3–6 months post-operatively. Psychological function is the only QoL domain that remains stable throughout the post-operative period. ConclusionMapping QoL trajectories provides a visual representation of post-operative progress, highlighting the enduring impact of pelvic exenteration on patients and can be used to inform pre-operative shared decision-making.

Identifying quality of life outcome patterns to inform treatment choices in ischemic cardiomyopathy

BackgroundThe Surgical Treatment for Ischemic Heart Failure (STICH) trial found that routine use of coronary artery bypass surgery (CABG) improved mean quality of life (QoL) scores relative to guideline-directed medical therapy (GDMT) in patients with ischemic cardiomyopathy. However, mean differences in QoL scores do not provide what patients want to know when facing a high-risk/high-benefit treatment choice. MethodsWe analyzed Kansas City Cardiomyopathy Questionnaire (KCCQ) Overall Summary scores in CABG and GDMT patients over 36 months using a combination of statistical methods to group QoL data into clinically relevant outcome patterns (phenotype trajectories) and to then identify the main baseline predictors of each phenotype. QoL outcome phenotypes were developed using mixture models to define the dominant phenotype trajectories present in STICH QoL data. Logistic regression models were used to predict each patient's probability of achieving each outcome pattern with each treatment. ResultsIn STICH, 592 patients underwent CABG and 607 were managed with GDMT. Our analyses identified 3 phenotype trajectory patterns in both treatment groups. Two of the 3 trajectories showed improving patterns, and were classified as “good QoL trajectories,” seen in 498 (84.1%) CABG and 449 (73.9%) GDMT patients. Defining a consequential CABG-GDMT treatment difference as a >10% higher absolute predicted probability of belonging to good QoL trajectories, 277 (23.5%) patients were more likely to have good outcome with CABG while 45 (3.8%) patients were more likely to have a good outcome with GDMT. For 644 (54.7%) patients, CABG and GDMT probabilities of a good outcome were within 5% of each other. ConclusionsThe pattern of QoL outcomes after CABG compared with GDMT in STICH followed 3 main phenotypic trajectories, which could be predicted based on individual baseline features. Patient-specific predictions about expected QoL outcomes with different treatment choices provide an intuitive framework for personalizing patient decision making.

Health-related quality of life trajectories in melanoma patients after electrochemotherapy: real-world insights from the InspECT register.

Electrochemotherapy (ECT) effectively controls skin metastases from cutaneous melanoma. This study aimed to evaluate health-related quality of life (HRQoL) in melanoma patients pre-/post-ECT and its effect on treatment outcome. The analysis included prospective data from the International Network for Sharing Practices of ECT register. Following the Standard Operating Procedures, patients received intravenous or intratumoural bleomycin (15,000 IU/m2 ; 1000 IU mL/cm3 ) followed by 100-microsecond, 1000-V/cm electric pulses. Endpoints included response (RECIST v3.0), local progression-free survival (LPFS), toxicity (CTCAE v5.0), and patient-reported HRQoL at baseline, one, two, four and ten months (EuroQol [EQ-5D-3L], including 5-item utility score [EQ-5D] and visual analogue scale for self-reported health state [EQ-VAS]). Comparisons within/between subgroups were made for statistical and minimal important differences (MID). HRQoL scores and clinical covariates were analysed to identify predictors of response in multivariate analysis. Median tumour size was 2 cm. Complete response rate, G3 toxicity and one-year LPFS in 378 patients (76% of the melanoma cohort) were 47%, 5%, and 78%. At baseline, age-paired HRQoL did not differ from the general European population. Following ECT, both EQ-5D and EQ-VAS scores remained within MID boundaries, particularly among complete responders. A subanalysis of the EQ-5D items revealed a statistically significant deterioration in pain/discomfort and mobility (restored within four months), and self-care and usual activities (throughout the follow-up) domains. Concomitant checkpoint inhibition correlated with better EQ-5D and EQ-VAS trajectories. Baseline EQ-5D was the exclusive independent predictor for complete response (RR 14.76, p=0.001). HRQoL of ECT melanoma patients parallels the general population and is preserved in complete responders. Transient deterioration in pain/discomfort and mobility and persistent decline in self-care and usual activities may warrant targeted support interventions. Combination with checkpoint inhibitors is associated with better QoL outcomes. Baseline HRQoL provides predictive information which can help identify patients most likely to respond.

Classifying and characterizing the development of self-reported overall quality of life among the Chinese elderly: a twelve-year longitudinal study

BackgroundTo promote healthy aging, the information about the development of quality of life (QoL) is of great importance. However, the explorations of the heterogeneity in the change of QoL under the Chinese context were limited. This study aimed to identify potential different development patterns of QoL and the influential factors using a longitudinal, nationally representative sample of the Chinese elderly.MethodsWe adopted a five-wave longitudinal dataset from the Chinese Longitudinal Healthy Longevity Survey (CLHLS), and a total of 1645 elderly were obtained. The sample had a mean age of 72.7 years (SD = 6.64) and was 47.2% male. Overall QoL was measured through self-report during the longitudinal process. We utilized the conditional growth mixture model (GMM) with time-invariant covariates (TICs) to explore various development patterns and associated factors.ResultsThree distinct trajectories of self-reported overall QoL were identified: the High-level Steady Group (17.08%), the Mid-level Steady Group (63.10%), and the Low-level Growth Group (19.82%). Results also indicated that several factors predicted distinct trajectories of self-reported overall QoL. Those elderly who received enough financial resources, had adequate nutrition, did not exhibit any disability, engaged in leisure activities, and did less physical labor or housework at the baseline were more likely to report a higher level of overall QoL over time.ConclusionsThere existed three development patterns of self-reported overall QoL in elders, and the findings provided valuable implications for the maintenance and improvement of QoL among the Chinese elderly. Future studies could examine the influence of other confounding factors.

Dynamics of Long-Term Patient-Reported Quality of Life and Health Behaviors After Adjuvant Breast Cancer Chemotherapy.

PURPOSEWe aimed to characterize long-term quality of life (QOL) trajectories among patients with breast cancer treated with adjuvant chemotherapy and to identify related patterns of health behaviors.METHODSFemale stage I-III breast cancer patients receiving chemotherapy in CANTO (CANcer TOxicity; ClinicalTrials.gov identifier: NCT01993498) were included. Trajectories of QOL (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire–C30 Summary Score) and associations with trajectory group membership were identified by iterative estimations of group-based trajectory models and multivariable multinomial logistic regression, respectively.RESULTSFour trajectory groups were identified (N = 4,131): excellent (51.7%), very good (31.7%), deteriorating (10.0%), and poor (6.6%) QOL. The deteriorating trajectory group reported fairly good baseline QOL (mean [95% CI], 78.3/100 [76.2 to 80.5]), which significantly worsened at year-1 (58.1/100 [56.4 to 59.9]) and never recovered to pretreatment values through year-4 (61.1/100 [59.0 to 63.3]) postdiagnosis. Healthy behaviors were associated with better performing trajectory groups. Obesity (adjusted odds ratio [aOR] v lean, 1.51 [95% CI, 1.28 to 1.79]; P < .0001) and current smoking (aOR v never, 1.52 [95% CI, 1.27 to 1.82]; P < .0001) at diagnosis were associated with membership to the deteriorating group, which was also characterized by a higher prevalence of patients with excess body weight and insufficient physical activity through year-4 and by frequent exposure to tobacco smoking during chemotherapy. Additional factors associated with membership to the deteriorating group included younger age (aOR, 1-year decrement 1.01 [95% CI, 1.01 to 1.02]; P = .043), comorbidities (aOR v no, 1.22 [95% CI, 1.06 to 1.40]; P = .005), lower income (aOR v wealthier households, 1.21 [95% CI, 1.07 to 1.37]; P = .002), and endocrine therapy (aOR v no, 1.14 [95% CI, 1.01 to 1.30]; P = .047).CONCLUSIONThis latent-class analysis identified some patients with upfront poor QOL and a high-risk cluster with severe, persistent postchemotherapy QOL deterioration. Screening relevant patient-level characteristics may inform tailored interventions to mitigate the detrimental impact of chemotherapy and preserve QOL, including early addressal of behavioral concerns and provision of healthy lifestyle support programs.