Health-related Quality Of Life Monitoring Research Articles

714-P: Health-Related Quality of Life (HRQOL) in Young Adults with T1D

Challenges of young adulthood with T1D include transitioning to adult care, increased self-management responsibility, and developmental changes. Recognizing patterns of HRQOL across demographically and clinically diverse young adults with T1D may help identify who needs additional support as they transfer to adult healthcare. We hypothesized that young adults from racially, ethnically, and socioeconomically marginalized groups and those with higher A1c would report lower HRQOL. At baseline of a behavioral RCT (≤2 months after last pediatric T1D clinic visit), 82 young adults (Mage=19.9±1.3, MA1c=8.9±2.0%) self-reported demographics and HRQOL; A1c was analyzed via point of care or dried blood spot. ANOVAs, t-tests, and a regression model compare HRQOL by demographic (gender, race/ethnicity, insurance, school enrollment) and clinical variables (device use, A1c). As detailed in the table, HRQOL was significantly higher for participants in school and men (p<.01). Pump-users reported higher HRQOL on the “Handling Diabetes Well” and “Peer Relationships” subscales (p<.05). Regression analyses yielded gender and school enrollment as significant predictors of HRQOL (p<.01). Variability across groups of young adults with T1D suggests monitoring HRQOL may be helpful to identify T1D-specific psychosocial needs during this transition. Patterns suggest women and those not in school may benefit from additional support. Disclosure M.Baudino: None. M.E.Hilliard: None. S.A.Carreon: None. R.Streisand: None. T.S.Tang: Research Support; Juvenile Diabetes Research Foundation (JDRF), Speaker's Bureau; Abbott Diabetes, Insulet Corporation. S.Lyons: None. S.Mckay: None. B.J.Anderson-thomas: None. C.G.Minard: None. A.Butler: None. Funding National Institute of Diabetes and Digestive and Kidney Diseases (1R01DK119246 to M.E.H.)

Rediscovering Allergic Rhinitis: The Use of a Novel mHealth Solution to Describe and Monitor Health-Related Quality of Life in Elderly Patients

Introduction: Allergic rhinitis (AR) is a disease characterized by IgE-mediated hypersensitivity responses akin to allergic asthma. Although common in children and young adults, AR can be particularly vexing in the elderly: several studies have underlined its impact on the patient’s self-perceived health-related quality of life (HR-QoL). Available literature data on AR-affected elderly patients remain sparse and often focused on specific characteristics. mHealth solutions such as MASK-air® can be used in assessing salient clinical characteristics and unique shifts in self-perceived HR-QoL in old age people. With this pilot study, we aim to assess these variables in two cohorts of AR-affected elderly patients – one actively involved in the daily use of mHealth applications and the other having never used such a solution – by applying a widespread, validated, and standardized tool. Methods: AR-affected patients aged ≥65 years accessing the outpatient clinic of the Bari Geriatric Immuno-allergology Unit between March and July 2021 were enrolled and assigned to “mHealth” (MASK-air®) and “non-mHealth” cohorts accordingly. Each participant was given a 19-item questionnaire delivered via a custom software solution, with the EuroQoL EQ-5D-5L used to assess HR-QoL. Results: 93 patients (51 mHealth users, 43 non-mHealth users) were enrolled. AR was often either standalone or associated with asthma and conjunctivitis, and 57.4% of the participants reported a negative influence of AR on daily activities. Analysis of HR-QoL showed significantly worse scores in mobility and anxiety/depression dimensions for female patients regardless of app usage, while male non-mHealth users had worse self-care scores. Female mHealth users had worse scores for the self-care and activity dimensions, whereas female non-mHealth users showed worse scores on the pain scale. In general, mHealth users showed a greater degree of anxiety/depression when compared to non-mHealth users, relating to a greater awareness of their health status. Conclusion: The use of an mHealth solution, along with a concise, clinically-validated, comprehensive HR-QoL assessment toolset such as the EQ-5D, can prove beneficial in defining the unique characteristics of AR in the elderly. It can enable a detailed exploration of the impact on specific aspects of quality of life in old age. Raising patient awareness towards a health condition can improve compliance to treatment as well as follow-up. A lack of uniformity in approach, along with missing data pertaining to the general population are critical issues that require further studies. A more thorough diffusion of mHealth usage is also necessary among the geriatric population.

Health-related quality of life and overall survival: a prospective study in patients with head and neck cancer treated with radiotherapy

PurposeWe aimed to examine whether pre-treatment, post-treatment and change in health-related quality of Life (HRQoL) is associated with survival, in patients with head and neck cancer (HNC).MethodsWe included 948 newly diagnosed HNC patients treated with primary or adjuvant (chemo)radiotherapy with curative intent. The EORTC QLQ-C30 questionnaire was assessed pre-treatment and at 6 weeks, 6 months and 12 months post-treatment. Multivariable Cox regression analyses were performed to examine whether HRQoL at all time points and changes in HRQoL over time were associated with survival, after adjusting for demographic, clinical and lifestyle-related variables.ResultsHigher HRQoL scores were significantly associated with improved 5-year overall survival at all time points, except for the subscale global QoL at 6 weeks. Changes in HRQoL at 6 weeks post-treatment compared to pre-treatment were not significantly associated with survival. Changes in physical (HR: 0.88 95% CI: 0.82–0.96) and emotional functioning (HR: 0.90 95% CI: 0.85–0.96) from pre-treatment to 6 months post-treatment and changes in global QOL, and physical, emotional, and social functioning from pre-treatment to 12 months post-treatment were significantly associated with survival.ConclusionHigher HRQoL reported pre-treatment and post-treatment (6 weeks, 6 months and 12 months) are significantly associated with improved survival, as well as changes in HRQoL at 6 and 12 months compared to pre-treatment. Our results highlight the value of monitoring HRQoL and to identify those patients that report decreased or deteriorated HRQOL. This may help to further improve cancer care in a timely and efficient manner.

Health-related Quality of Life for Children With Leukemia: Child and Parental Perceptions.

The importance of health-related quality of life (HRQoL) in patients with acute lymphoblastic leukemia (ALL) has increased in recent years. This study aimed to assess HRQoL in children with ALL, affecting factors, and the relationship between parent proxy-report and child self-report HRQoL. A total of 59 children and their parents (both mother and father) were enrolled in this cross-sectional study. Turkish version of the Pediatric Quality of Life Inventory (PedsQL) 3.0 Cancer Modules were used to determine HRQoL. According to subscales of the self-report form, nausea and operational anxiety scores differed significantly by the treatment status; communication score varied considerably by the hospitalization length of stay; pain and hurt, cognitive problems, and perceived physical appearance scores differed significantly by the maternal chronic disease status (P<0.05). The presence of maternal chronic disease was significantly related to the total score of the parent-proxy report (mother) (P<0.05). There was a moderate correlation between total scores of child and mother (P<0.05, r=0.419) but not with the father. Children on-treatment had significant problems in nausea and procedural anxiety subscales; however, children who were hospitalized more had fewer issues in the communication subscale. Also, children whose mother had chronic disease had poorer HRQoL regarding pain and hurt cognitive problems and treatment anxiety. Given the importance of assessment and monitoring HRQoL in children with ALL, health professionals should be aware of how parents' chronic disease affects HRQoL. Psychosocial support should be provided to children and their parents, especially for those whose parents have a chronic illness.

Male gender, school attendance and sports participation are positively associated with health-related quality of life in children and adolescents with congenital bleeding disorders.

This study assesses health-related quality of life (HRQOL), and variables associated with HRQOL, in children and adolescents with haemophilia and congenital bleeding disorders (CBD) in the Netherlands. Patients <18years with CBD under treatment at the Hemophilia Comprehensive Care Center of the Academic Medical Center were included. Participants completed generic HRQOL questionnaires (TAPQOL 0-5years; PedsQL 6-18years). Differences and effect sizes in HRQOL compared to healthy peers, and between hemophilia severity groups, were tested using Mann Whitney U-tests. Multivariate regression analyses were performed to assess variables associated with HRQOL. Data of 145 patients (81%) were analyzed (N=32 with severe haemophilia). Children (0-12 years) show no significant impairments in HRQOL compared to healthy peers. Adolescent boys (13-18 years) with CBD report a slightly higher HRQOL on the total and emotional functioning scales than healthy peers (small-moderate effect sizes). In contrast, adolescent girls experience lower HRQOL on total, social functioning and psychosocial health scales compared to healthy peers (moderate effect sizes). No differences between severity groups were found in HRQOL, but more problem behaviour was found in young boys (0-5 years) with severe haemophilia. Male gender, participation in sports and school attendance are positively associated with HRQOL. Parental country of birth, type of treatment and number of bleeds are not associated with HRQOL. Continuing monitoring HRQOL in daily clinical practice for children with CBD is important, since possible influencing psychosocial factors can change over time, with special focus on adolescent girls, sports participation and school absence.

Impact of monitoring health-related quality oflife in clinical practice in children with type 1 diabetes mellitus.

To test whether the systematic monitoring of health-related quality of life (HRQOL) in clinical practice in Spanish pediatric patients with T1DM helps improve their daily life in a multicenter longitudinal study. One hundred thirty-six patients participated, recruited from five centers in Barcelona, Spain (72 girls, mean age 13.4years). Complete data were collected for 119 patients (85%). Pediatricians were randomly assigned to the HRQOL intervention (n=70), or control group (n=49). The intervention group discussed the results of HRQOL face to face with the physician, quarterly over a year. The control group received care as usual. HRQOL was assessed using KIDSCREEN-27 collected online. Standardized mean differences (effect size, ES) and generalized estimating equation (GEE) were computed to compare group differences between baseline and follow-up, taking into account sociodemographic and clinical variables. Statistically significant higher scores were seen in the intervention group at follow-up for the dimensions of Psychological well-being (ES=0.56), School environment (ES=0.56), and the KIDSCREEN-10 index (ES=0.63). No differences were found in the control group. GEE analysis showed an improvement in HRQOL at follow-up with statistically significant association of the intervention on Psychological well-being (B=4.32; p 0.03 for the interaction of group by follow-up) and School environment (B=4.64; p 0.02 for the same interaction term). Routine assessment and face-to-face patient-physician discussion of HRQOL results improved HRQOL scores after a year of follow-up, especially in Psychological well-being and school environment. The results support the routinary use of HRQOL assessment in clinical practice.

Health related quality of life in 2002 and 2015 in patients undergoing hemodialysis: a single center study

Health related quality of life (HRQOL) has become a recognized outcome in studies of the treatment of patients undergoing hemodialysis (HD). The aim of this study was to assess changes in HRQOL reported by two different samples of patients undergoing HD in the same dialysis center in 2002 and 2015. Two samples of patients from the same Danish dialysis center completed the HRQOL questionnaire Kidney Disease Quality of Life version 1.3 in 2002 (n = 71) and 2015 (n = 81), respectively. The associations between KDQOL summery scores and the time frame were analyzed in multivariable regression analyses. The 2015 sample of patients were older compared to the 2002 sample (66 ± 13 vs. 59 ± 16 years, p = 0.003, respectively), they comprised more obese patients (20.6 vs. 3.2%, p = 0.002) and more patients with hypoalbuminemia (66.7 vs. 42.9%, p = 0.006). After confounder adjustment the time period 2015 versus 2002 was not associated with changes in the generic summery scales Physical Component Scale (β 3.9, 95% CI <−0.1; 7.9, p = 0.051) and Mental Component Scale (β −2.5, 95% CI −7.6; 2.5, p = 0.322) or the disease specific summery scale Kidney Disease Component Scale (β 1.0, 95% CI −5.1; 7.1, p = 0.746). This study indicated an unchanged HRQOL when recent data were compared with data collected 13 years earlier in patients undergoing HD from a Danish dialysis center. We suggest that the included dialysis center monitor HRQOL and pay attention on interventions that may be associated with improvements of HRQOL and reduce the elevated frequency of patients with obesity or hypoalbuminemia.

Working toward a good life as a cancer survivor: a longitudinal study on positive health outcomes of a rehabilitation program for young adult cancer survivors.

Background:Research on cancer rehabilitation targeting young adult cancer survivors (YACS) is limited, and little is known about the positive health outcomes of rehabilitation programs tailored specifically for this vulnerable group.Objective:The aim of this study was to investigate whether a complex rehabilitation program improved the health-related quality of life (HRQOL) and physical capacities of YACS.Methods:A longitudinal prospective study using Norwegian norm-based comparisons was conducted. Twenty YACS (24–35 years old) with different cancer diagnoses participated in a complex rehabilitation program lasting for 6 months, focusing on goal setting, exercise, psychoeducation, individual follow-up, and peer support.Results:Health-related quality of life was measured by EORTC QOL C-30 and the scores showed significant increases in overall HRQOL (P < .005–.001) and all functional dimensions (P < .001–.05) and a decrease in fatigue (P < .000–.05) and effect sizes between 0.72 and 1.30. Significant changes occurred within physical fitness (P < .005), lung capacity (P < .05), and left-hand strength (P < .001), but not right-hand strength and body mass index, with effect sizes between −0.04 and 0.48. The values of HRQOL were stable after a 1-year follow-up.Conclusions:A complex cancer rehabilitation program especially tailored for YACS seems to build positive health outcomes such as HRQOL and physical capacity in a long-term perspective. The content and structure of the program were feasible with high compliance. The results underline the importance of targeting rehabilitation interventions to YACS in need after cancer treatment, acknowledging rehabilitation as a process that requires adequate time and follow-up.Implications for practice:Healthcare providers should be aware of YACS’ symptom burden and monitor HRQOL and physical parameters to ascertain holistic cancer survivorship care.

Quality of Life and Outcomes in Multiple Myeloma Patients

Background: Multiple Myeloma (MM) patients have a substantially reduced Health related Quality of Life (HQOL) at diagnosis (dx) due to disease related symptoms like bone pain (58%) and fatigue (32%). HQOL monitoring is becoming increasingly important, owing to improved survival and the impact of treatment-related toxicity. As a result HQOL assessments are increasingly being used in clinical trials, but the literature regarding the relationship between HQOL and outcomes in MM is sparse. We used the Mayo Clinic “Hematology Patient Reported Symptom Screen” (HPRSS) to assess the impact of HQOL on outcomes in newly dx patients with MM.Methods:We retrospectively reviewed charts of 453 patients with newly dx MM seen at Mayo Clinic, Rochester from 2009 to 2014. All patients who visit Mayo clinic hematology clinic complete a 3-point questionnaire (HPRSS) on pain, fatigue and quality of life (QOL) (scored on a scale of 0-10; with 0 being the least fatigue or pain and 10 being the best QOL). Pain, fatigue and QOL scores documented at the time of dx and at 6 months were collected. JMP version 10 was used for the data analysis.Results: The median age at diagnosis was 67 years (range, 33-95); 60% were male. The estimated median OS for the cohort was 21 m (95% CI19, 23); 387 (85%) of the patients were alive at last follow up and the median OS for the population was not reached. The median (IQR) scores for pain, fatigue and QOL were 4 (2, 6), 3 (1, 5), and 7 (5, 9), respectively. First, we examined the relationship between each of the scores (dichotomized at the median) and the baseline characteristics. Higher fatigue scores were associated with lower Hb and serum albumin and higher beta 2 microglobulin, LDH and marrow plasmacytosis. Higher pain scores were seen in female patients, and associated with higher B2M, serum calcium and lytic bone lesions. Lower QOL scores were associated with lower absolute lymphocyte count and serum albumin levels. Next, we examined the relationship between the scores and the OS from diagnosis. The overall survival was inferior for patients with higher pain scores, fatigue scores and lower QOL scores (Figure). In a multivariable analysis, fatigue scores were most strongly associated with survival outcome. Patients with adverse scores in two or more of pain, fatigue and QOL had significantly inferior outcomes (Figure). In univariate analysis, age, B2M, LDH, FISH high risk and the presence of two or more adverse scores were all significantly associated with poorer OS. In a multivariable analysis, age, LDH and the presence >=2 adverse scores were all associated with shorter OS.Of the 453 patients included in the study, 222 patients had pain, fatigue and QOL scores at 6 month from diagnosis. At 6 months, the median (IQR) scores for pain, fatigue and QOL were 2 (1, 5), 4 (2, 5), and 7 (5, 9), respectively; suggesting improved pain, worsened fatigue and static QOL scores. Improvement in the scores by at least one point was seen in 50%, 49% and 38% for the fatigue, pain and QOL scores. While the pain and fatigue scores at 6 months correlated inversely with OS, improvements in the scores in any of the three were not associated with any improved outcomes.Conclusion: A simple, patient reported scoring system for pain, fatigue, and overall perceived QOL at the time of diagnosis is a powerful predictor of survival outcomes in patients with newly diagnosed MM and should be considered routinely in clinical practice. The results of these patient reported measures can be utilized to develop risk-adapted trials in patients with MM. [Display omitted] DisclosuresNo relevant conflicts of interest to declare.

Health-related quality of life after surgery for hip fracture: a multicentric study in Mexican population.

Hip fractures are an important cause of morbidity and mortality and one of the main causes of disability in the older population. The lifetime risk for any type of osteoporotic fracture is very high and falls within the range of 40–-50% in women and 13–-22% for men. In Mexico, the lifetime likelihood of having a hip fracture at 50 years of age is 8.5% in Mexican women and 3.8% in Mexican men, but this is expected to rise in upcoming years. This study aims to report the Health-Related Quality of Life over the first six months after a hip fracture in two public and two private tertiary care hospitals in Mexico City. Changes over time were evaluated through visual observation of each patient’s development trajectory using the graphic representation of the EQ-5D global score. The trajectories were grouped by affinity into five levels of progress according to clinical course. The identified descriptive options were analyzed using the multinomial logistic regression model (LR). One-hundred-and-thirty-six (136) patients with a hip fracture were followed after surgery. Their mean age was 77 ± 10 years. During the first month, mobility, daily activities, and self-care were the most affected. The group aged between 80 and 84 years reported extreme problems regarding anxiety and depression (21%), and those aged between 50 and 74 years described having issues concerning pain and discomfort (27%). At the 6-month follow-up, only those aged > 85 years of age showed worsening of their condition, a high proportion of these ranking at level 3 in mobility, self-care, and anxiety/depression. Toward the end of the follow-up period, this last group reported having extreme problems (being unable to carry out everyday activities) and worsening of their mobility (9.2%) (inability to walk about) (LR test, p = 0.06). Patients with hip fracture showed difficulties in different areas during the first month after surgery, with steady recuperation up to month six. Age was an important factor in the recovery of all evaluated domains. This graphical tool facilitates classification, identification, and monitoring Health-Related Quality of Life in patients with hip fractures.

Effectiveness of a Web-Based Application to Monitor Health-Related Quality of Life

Monitoring health-related quality of life (HRQoL) by using electronic patient-reported outcomes (ePROs) has been only minimally evaluated in pediatrics. Children with juvenile idiopathic arthritis (JIA) are at risk for HRQoL problems. The aim of this study was to investigate the effectiveness of ePROs in clinical pediatric rheumatology care. All children (aged 0-18 years) with JIA visiting any of the 4 pediatric rheumatology clinics in Amsterdam between February 2009 and February 2010 were eligible for this sequential cohort intervention study. Before an outpatient consultation, children (aged 8-18 years) or parents (of children aged 0-7 years) completed web-based questionnaires. The resulting ePROfile was provided to the pediatric rheumatologist (PR). The study was divided into a control period in which the ePROfile was not discussed during consultation, and an intervention period in which the ePROfile was provided and discussed during consultation. Effectiveness was evaluated in terms of communication about different HRQoL topics, referral to a psychologist, and satisfaction with the consultations. Out of the eligible JIA patients, 176 (65%) participated in the study. Use of the ePROfile increased discussion of psychosocial topics (P < .01), as well as the PR's satisfaction with provided care during consultation (P < .01). The use of ePROfiles did not affect referrals to a psychologist or parental satisfaction. Parents and PRs evaluated the use of the ePROfile as positive in 80% to 100% of the consultations. Our web-based application to systemically monitor HRQoL problems in pediatric rheumatology contributed significantly to communication about psychosocial issues in a positive way. We recommend implementation of ePROs in pediatric clinical practice.

Effectiveness of a Web-Based Application to Monitor Health-Related Quality of Life

Effectiveness of a Web-Based Application to Monitor Health-Related Quality of Life

Reporting health‐related quality of life scores to physicians during routine follow‐up visits of pediatric oncology patients: Is it effective?

The aim of the current study is to investigate the effectiveness of an intervention that provides health-related quality of life (HRQOL) scores of the patient (the QLIC-ON PROfile) to the pediatric oncologist. Children with cancer participated in a sequential cohort intervention study: intervention N = 94, control N = 99. Primary outcomes of effectiveness were communication about HRQOL domains (t-test, Mann-Whitney U-test) and identification of HRQOL problems (chi-squared test). Secondary outcomes were satisfaction (multilevel analysis), referrals (chi-squared test), and HRQOL (multilevel analysis). The QLIC-ON PROfile increased discussion of emotional functioning (control M = 32.9 vs. intervention M = 47.4, P < 0.05) and psychosocial functioning (M = 56.9 vs. M = 63.8, P < 0.05). Additionally more emotional problems remained unidentified in the control compared to the intervention group, for example, anger (control 26% vs. intervention 3%, P < 0.01), fear (14% vs. 0%, P < 0.01), and sadness (26% vs. 0%, P < 0.001). The intervention had no effect on satisfaction and referrals, but did improve HRQOL of patients 5-7 years of age with respect to self-esteem (P < 0.05), family activities (P < 0.05), and psychosocial functioning (P < 0.01). We conclude that a PRO is a helpful tool for systematic monitoring HRQOL of children with cancer, without lengthening the duration of the consultation. It is recommended to be implemented in clinical practice.

Symptom Burden and Quality of Life in Patients with Follicular Lymphoma undergoing Maintenance Treatment with Rituximab Compared with Observation.

The impact on health related quality of life (HRQoL) of rituximab maintenance (R-M) versus observation (OBS) after induction for treatment of follicular lymphoma (FL) is unclear. We reviewed the charts of 137 patients (53% female, 87% White, age 61.0 ± 12.4 years) who received either R-M (n = 53) or OBS (n = 84) after chemotherapy induction for newly diagnosed FL at community oncology practices within the US. Patients (65% with advanced disease; 48% with a high FLIPI score [3-5]) had completed ≥1 Patient Care Monitor HRQoL survey in the period following front-line therapy, and were excluded if they had progressed during front-line therapy. Linear mixed models showed that postinduction, most symptoms were stable, with patients on R-M reporting HRQoL that was equal to that reported by OBS patients. Among R-M patients, receipt of rituximab was associated with improved psychological symptoms.

A New Self-Administered Questionnaire to Monitor Health-Related Quality of Life in Patients With COPD

To develop and validate a brief, computer-scannable, self-administered questionnaire to monitor health-related quality of life in patients with COPD. The Seattle Obstructive Lung Disease Questionnaire (SOLQ) consists of 29 items measuring four health dimensions: physical function, emotional function, coping skills, and treatment satisfaction. A series of studies was performed to assess reliability, validity, and responsiveness. Internal consistency was measured using a cross-sectional survey of 203 COPD patients. Reproducibility was tested over a 4-month interval among 97 patients with self-reported stable conditions. To assess construct validity, SOLQ scales were correlated with corresponding Chronic Respiratory Disease Questionnaire (CRDQ) scales, the COPD Self-Efficacy Scale (CSES), percent predicted FEV1, and 6-min walk test. Treatment satisfaction scores of 920 subjects were correlated with a general measure of patient satisfaction. Baseline and follow-up scores of subjects were compared to assess treatment responsiveness. SOLQ scales were reliable (Cronbach's alpha 0.79 to 0.93, and intraclass correlation coefficients 0.64 to 0.87). Change in SOLQ scores correlated with corresponding CRDQ scales: dyspnea, r=0.42; emotional burden, r=0.49; mastery, r=0.36. Coping skills correlated highly with CSES, r=0.93. Treatment satisfaction correlation was r=0.54. Significant changes occurred in all three scales postintervention. The SOLQ is a reliable, valid, and responsive measure of physical and emotional function, coping skills, and treatment satisfaction. Brief, self-administered, and computer scannable, it is useful in monitoring long-term outcomes among large groups of COPD patients.