HRQOL Scores Research Articles

O048 The CF elephant in the adolescent room: a cross sectional study of sleep and mood in adolescents with cystic fibrosis

Abstract Background Mental health issues are of increasing burden within the adolescent CF population, with known impacts from sleep disturbance. There are limited studies examining mediators of this relationship. We aimed to investigate the relationship between sleep quality and mood in adolescents with CF alongside a range potential mediating factors including socioeconomic and family influences in adolescents. Study Design Adolescents with CF aged 10–18 and their parents at a Victorian tertiary paediatric CF centre were eligible. Adolescents-parent pairs cross sectionally completed age appropriate online questionnaires assessing sleep (Pediatric Daytime Sleepiness Scale, Sleep Disturbance Scale for Children), mood (Global Anxiety Disorder-7, Patient Health Questionnaire-9, Beck’s Depression Inventory, Brigid Jordan CF screen), health-related quality of life (CF Questionnaire-Revised), family dynamics (Family Assessment Device, Family Management Measure), CF respiratory symptoms (CF Respiratory Symptom Score), and treatment adherence. Socioeconomic status and impacts from pandemic lockdowns were also surveyed. Progress to date 45 CF adolescents-parent pairs have been recruited. Questionnaires have been distributed and awaiting return of results for analysis. Intended outcome and impact We anticipate demonstrating the known association between impaired sleep quality and elevated mood scores. We will also make commentary on associations with a range of social factors (family dynamics, socioeconomic status) as well as parental mental health. Discussion will also include impacts on treatment adherence, HRQOL and respiratory symptom scores. Results from this pilot will inform the upcoming AREST CF prospective longitudinal study where the bidirectional relationships between factors studied can be further explored.

Quality of Life and Activities of Daily Living among Patients with Complete Cervical Spinal Cord Injury and Surgical Treatment in Vietnam.

Spinal cord injury (SCI) is defined as temporary or permanent changes in spinal cord function and reflex activity. The objective of this study is to evaluate health-related quality of life (HRQoL) and activities of daily living (ADL) among postoperative surgery patients with complete cervical SCI in Vietnam and to explore the factors associated with these indices. A cross-sectional study was conducted on 88 adults in Vietnam from June 2018 to June 2019. The EQ-5D-5L, ADL, and instrumental activities of daily living (IADL) were applied. Multivariate Tobit regression was adopted to determine factors that were associated with HRQOL, ADL, and IADL. Results: Participants who were in American Spinal Cord Injury Association (ASIA) scale group A (ASIA-A) had the lowest ADL, IADL index, and HRQOL score (p < 0.001). HRQoL and ADL were affected by health insurance coverage, occupation, type of fracture, and IADL. Meanwhile, IADL was significantly associated with living areas and ASIA. Low HRQoL among patients suffering from SCI was observed. Attention should be given to outcomes related to a disability during clinical treatment and should be treated effectively in the recovery.

Investigating the effect of relationship satisfaction on postpartum women’s health-related quality of life in Burkina Faso: a cross-sectional analysis

IntroductionThe period following childbirth poses physiological, physical, social and psychological challenges to women that may affect their quality of life. Few studies in Africa have explored women’s health-related quality of...

Role of family functioning and health-related quality of life in pre-school children with dental caries: a cross-sectional study

BackgroundThe aim of this cross-sectional study was to evaluate the effect of family functioning on oral health related quality of life (OHRQoL) and dental caries status among 4- to 6-year-old Chinese pre-school children in Malaysia.MethodologyThis study was approved by the institutional Joint Research and Ethics Committee, International Medical University, Malaysia (number 373/2016); consisted of 180 eligible pre-school children from a private school. Study tools included demographic, clinical oral health data form, the Early Childhood Oral Health Impact Scale (ECOHIS) and family functioning—12-item general functioning subscale. Written consent was sought prior to data collection. Data were analysed by SPSS v.22.0; descriptive statistics for socio-demographic details, clinical information, HRQoL and FAD scores. The parametric tests included independent sample t test and ANOVA to evaluate the associations between the dependent variable. Binary logistic regression models were applied to assess the impacts on OHRQoL (P value < 0.05).ResultsA response rate of 80.5% was achieved. Sample means for FAD-GF12 scores ranged < 2, indicating normal family functioning. The ECOHIS scores mean was 0.52 (SD = 0.68). In the children impact section the highest score of impacts 20 was noted followed by family impact section with the score of 12. It was observed that children with dental caries had a significant (P = 0.014) negative impact on OHRQoL (mean 0.72, SD = 0.50) as compared to children with no caries (mean 0.34 SD = 0.39). The bivariate regression analysis after getting adjusted indicated three predictors associated to poor HRQoL: having two or more siblings (OR = 4.73, P = 0.013), relationship (mother) of the respondent to the child (OR = 2.86, P = 0.013) and having dental caries (OR = 8.12, P ≤ 0.001).ConclusionFindings of this study indicates that number of siblings, relationship of the respondent to the child and dental caries status are independently associated with health-related quality of life. However, family functioning does not mediate poor HRQoL in association to dental caries.

Health-Related Quality of Life and Toxicity After Definitive High-Dose-Rate Brachytherapy Among Veterans With Prostate Cancer.

High-dose-rate (HDR) brachytherapy (BT) is a well-tolerated and effective treatment for prostate cancer. There is limited research, however, investigating toxicity outcomes with HDRBT treatment among veterans. The objective of this study is to assess the impact on health-related quality of life (hrQOL) and physician-graded toxicities associated with HDRBT as monotherapy among veterans treated at Edward Hines, Jr. Veterans Affairs Hospital in Hines, Illinois. Between 2016 and 2019, 74 veterans with low- or intermediate-risk prostate cancer were treated with HDRBT as monotherapy with 27 Gy in 2 fractions, delivered over 2 implants. Veteran-reported hrQOL in the genitourinary (GU), gastrointestinal (GI), and sexual domains was assessed using the International Prostate Symptoms Score (IPSS) and Expanded Prostate Cancer Index Composite (EPIC-26) questionnaire. Mixed linear effect models were used to assess differences in the hrQOL scores at follow-up compared with baseline scores. Statistically significant differences in hrQOL scores from baseline were further assessed for clinical significance, using minimal clinically important difference (MCID) evaluations. Median follow-up was 18 months. Veterans reported declines in GU, GI, and sexual hrQOL scores immediately after treatment, with the IPSS and EPIC-26 hrQOL scores all displaying significant decrease from baseline over time. The majority of the declines in hrQOL scores met criteria for MCID. These hrQOL scores trended toward a return to baseline, with the EPIC-26 urinary obstruction score returning to baseline at the 18-month follow-up assessment and the EPIC-26 bowel score returning to baseline at the 12-month follow-up. The IPSS, urinary incontinence, and sexual scores did not return to baseline at 18 months. The grade 2 maximum physician-graded GU, GI, and sexual toxicity rates were 65%, 5%, and 53%, respectively. There was 1 incidence of grade 3 GU toxicity but no grade 3 GI or sexual toxicity. HDRBT as monotherapy is a well-tolerated treatment option for veterans with low- or intermediate-risk prostate cancer, with favorable veteran-reported and physician-graded toxicities. Veterans should be educated about HDRBT as an option when counseled regarding treatment for localized prostate cancer.

Predictive value of sagittal craniocervical roentgenographic parameters for HRQOL after craniocervical fusion.

Loss of "physiological" sagittal alignment following craniocervical fusion (CCF) for degenerative disease may be associated with loss of horizontal gaze, dysphagia and poor HRQOL. This study reports on sagittal craniocervical roentgenographic predictors of HRQOL (SF-36) in patients following uncomplicated CCF for fresh upper cervical traumatic (UCT) injuries. Twenty-two consecutive adult patients (group P) aged 50 ± 16years, who had undergone CCF for fresh unstable C1 and C2AO/type UCT injuries, were evaluated 39 ± 12months postoperatively with upright lateral cervical roentgenograms and SF-36as HRQOL measure. Physiological data for cervical sagittal alignment and SF-36 were taken from an age-matched control group (C) of 30 individuals aged 52 ± 12years. Several commonly used sagittal cervical roentgenographic parameters were tested as potential predictors of the SF-36 domains in both groups. Roentgenographic predictors for each of the nine SF-domains were calculated using stepwise multilinear regression analysis (MLRA). The roentgenographic predictors in patients included (1) the angle created by McGregor's line and the inferior surface of the axis (OC2a) for physical function (PF, P = 0.049), role limitations due to physical health (RLPH, P = 0.004),role limitation due to emotional problems (RLEP, P = 0.004), emotional functioning (EF) (P = 0.012), social functioning (SF) (P = 0.028) and general health (GH, P = 0.041). (2) The angle formed between a horizontal line and the superior endplate of T1-vertebra (T1-slope) was predictor for SF (P = 0.017) and pain (P = 0.021), and (3) the angle between McGregor's line and the line that links the center of the C1 anterior arch and the apex of cervical sagittal curvature (PIA) was predictor for health change (HC, P = 0.002). This study showed that postoperative OC2a, PIA and T1-slope safely predict HRQOL outcomes (SF-36) following CCF for fresh trauma. It seems theoretically that the adequate restoration of the upper cervical alignment including C1-C2 upper cervical lordosis (OC2a) and PIA, in interaction with T1-slope, is important for postoperative HRQOL scores close to physiological values. The authors speculate that C0-C4 fusion restores horizontal gaze and allows for painful regain of pre-trauma quality of life. Spine surgeons should realign and stabilize the craniocervical junction taking in consideration these roentgenographic predictors.

Does health-related quality of life differ between people with relapse onset and progressive onset Multiple Sclerosis?

BackgroundMultiple Sclerosis (MS) can be categorised as relapse onset MS (ROMS) and progressive onset MS (PROMS). We aimed to examine if health-related quality of life (in terms of health state utilities [HSUs] and dimensional scores) differed by onset type, in which health dimensions the differences were most pronounced, and whether these differences remained when stratified by disability severity. MethodsWe estimated HSUs and the unique composite ‘super-dimension’ and ‘individual dimension’ scores (crude, age, sex, disease duration and disease modifying therapies use adjusted; and stratified by onset type and disability severity) for a sample of 1577 participants in the Australian MS Longitudinal Study, using the Assessment of Quality of Life (AQoL)-8D. ResultsAdjusted mean overall HSU of PROMS was 0.55, 0.07 lower than ROMS. Adjusted mean physical and psychosocial super-dimension scores for PROMS were 0.51 and 0.28, 0.07 and 0.06 lower than for ROMS, respectively. For the individual health dimensions, the largest difference was seen in independent living (–0.12), followed by relationships (–0.07), and self-worth (–0.07). Whilst HSUs and dimensional scores were negatively associated with increasing disability severity in both onset types, estimates by disability severity did not differ between the two cohorts. ConclusionsOur study provides a comprehensive assessment of the effects of MS onset type on the overall and disability-severity specific HRQoL scores using a detailed preferentially sensitive AQoL-8D instrument. While overall HRQoL was substantially lower in PROMS than in ROMS, the mean HRQoL values for each disability level did not differ by onset type, indicating that future health economic models can use the same HSU inputs for both onset types.

Determining the Minimal Important Difference for the Wound-QoL Questionnaire.

BackgroundThe questionnaire for the quality of life with chronic wounds (Wound-QoL) is a valid and reliable instrument to determine the disease-specific health-related QoL of patients with chronic wounds. For the interpretation of HRQoL scores, it is additionally important to know which differences in scores are considered meaningful. The minimal important difference (MID) is defined as a change in HRQoL that a patient would consider meaningful, such that the patient would judge a treatment to be beneficial and worthy of repeating.ObjectiveTo interpret changes in the Wound-QoL scores and draw conclusions regarding the relevance of detected changes; the purpose of this study was to estimate the MID of the Wound-QoL global score and its subscales for patients with chronic wounds.Patients and MethodsPatients completed the Wound-QoL before and four to six weeks after treatment and additionally gave a global rating of wound status change after treatment. The global rating of change served as an anchor question. MIDs were calculated based on an anchor-based and a distribution-based method.ResultsIn total, 227 patients participated in the study. The mean age of the study population was 66.9 (± 12.7) median was 69.5, and 51.5% of the patients were female. MIDs for the Wound-QoL global score ranged from 0.47 to 0.52, proposing an overall estimation of 0.50.ConclusionThe results can be used to measure and interpret changes in wound-specific QoL over time.

Health-related quality of life and associated factors in HIV-positive transplant candidates and recipients from a HIV-positive donor.

HRQOL in transplant candidates and recipients who are also infected with HIV and are awaiting a kidney, or have received one from a HIV-positive donor, has not been previously investigated. The HRQOL of 47 HIV-positive kidney transplant candidates and 21 recipients from HIV-positive donors was evaluated using the Short Form-36 (SF-36) and face to face interviews at baseline and at 6months. The correlation between SF-36 scores and sociodemographic, clinical and nutritional factors was determined. 68 patients completed the SF-36 at baseline and 6months. Transplant candidates: transplant candidates had lower HRQOL than recipients. The main mental stressors were income, employment and waiting for a donor. Physical health complaints were body pain (BP) and fatigue. Pre-albumin and BMI was positively correlated with general health at baseline (r = 0.401, p = 0.031 and r = 0.338, p = 0.025). Besides a positive association with role physical (RP) and BP, albumin was associated with overall physical composite score (PCS) (r = 0.329, p = 0.024) at 6months. Transplant recipients: Transplant recipients had high HRQOL scores in all domains. PCS was 53.8 ± 10.0 and 56.6 ± 6.5 at baseline and 6months respectively. MCS was 51.3 ± 11.5 and 54.2 ± 8.5 at baseline and 6 months respectively. Albumin correlated positively with PCS (r = 0.464, p = 0.034) at 6 months and role emotional (RE) (r = 0.492, p = 0.024). Higher pre-albumin was associated with better RE and RP abilities and MCS (r = 0.495, p = 0.034). MAMC was associated with four domains of physical health and strongly correlated with PCS (r = 0.821, p = 0.000). Strategies to improve HRQOL include ongoing social support, assistance with employment issues and optimising nutritional status.

Assessing the impact of sodium oxybate treatment on functioning, productivity, and health-related quality of life in patients with narcolepsy: findings from the Nexus Narcolepsy Registry (waves 1–4)

BackgroundThe aim of this study was to evaluate the impact of different therapy regimens, including sodium oxybate (SXB)-containing regimens, on patient-reported outcomes (PROs) in people with narcolepsy. MethodsOnline surveys were used to collect information from persons with narcolepsy in the Nexus Narcolepsy Registry. Surveys contained questionnaires assessing self-reported sleep quality (SQ; via single question), daytime sleepiness and function (Epworth Sleepiness Scale and Functional Outcomes of Sleep Questionnaire), health-related quality of life (HRQoL; 36-Item Short Form Health Survey [SF-36]), work productivity and impairment (Work Productivity and Activity Impairment: Specific Health Problem), and history of injuries or motor vehicle accidents. Treatment with SXB (including monotherapy or combination therapy; SXB group) was compared with non-SXB therapy (No SXB group). The P values presented are nominal, as there are no adjustments for multiplicity. ResultsFrom June 2015 through December 2017, 983 participants completed 1760 surveys. SQ and daytime functioning scores were better in the SXB group compared with the No SXB group (all P < 0.001). HRQoL scores were better for the SXB group compared with the No SXB group for the SF-36 Physical Component (P = 0.016), Mental Component (P < 0.001), and all 8 subscales. Additionally, PROs were better for the SXB group for presenteeism, overall work and activity impairment, and risk of motor vehicle accidents (all P ≤ 0.001). ConclusionBased on participants’ self-assessments, treatment regimens with SXB were associated with better outcomes than regimens not containing SXB across many PROs, including SQ, HRQoL, work and activities, and risk of traffic accidents. Clinicaltrials.gov identifierNCT02769780.

Quality of life for kidney transplant recipients and hemodialysis patients in Palestine: a cross-sectional study

BackgroundHealth related quality of life (HRQOL) is an important indicator of medical treatment and is a strong predictor of disability and mortality. The literature has shown mixed evidence about whether kidney transplantation improves HRQOL compared with other renal replacement modalities. The aim of this study was to compare the HRQOL in kidney transplant recipients (KTRs) and hemodialysis (HD) patients.MethodsA cross-sectional study of 100 KTRs and 272 HD patients from two central kidney units in the West Bank, Palestine. The HRQOL was assessed using the Short Form-36 Health Survey. Multivariable linear regression was used to estimate differences in mean HRQOL scores between KTRs and HD patients.ResultsAs compared to HD patients, KTRs had higher clinically important HRQOL in main domains and subscales of the SF-36 including physical functioning, role-physical, bodily pain, general health, vitality, social functioning, role-emotional, mental health, ranging between 15.5 for social functioning (95% Confidence Interval (CI) 10.1, 20.7) to 32.6 for general health (95% CI 24.0, 41.1).ConclusionsWe found that KTRs have better HRQOL than HD patients in physical and mental components of the SF-36 scale including physical functioning, role-physical, bodily pain, general health, vitality, social functioning, role-emotional, and mental health. Further longitudinal research comparing HRQOL among KTRs and the general population may identify key modifiable factors associated with lower HRQOL among KTRs that are amenable to intervention.

A retrospective comparison of radiographic and clinical outcomes in single-level degenerative lumbar disease undergoing anterior versus transforaminal lumbar interbody fusion.

Single-level lumbar degenerative disc disease (DDD) remains a significant cause of morbidity in adulthood. Anterior lumbar interbody fusion (ALIF) and Transforaminal lumbar interbody fusion (TLIF) are surgical techniques developed to treat this condition. With limited studies on intermediate term outcomes in a single cohort, we compare radiographic and clinical outcomes in patients undergoing ALIF and TLIF. A retrospective chart review was performed on 164 patients (111 TLIF; 53 ALIF) over a 60-month period. X-ray radiographs obtained pre-operatively, prior to discharge, and at one year were utilized for radiographic assessment. Segmental lordosis, lumbar lordosis and HRQOL scores were measured preoperatively and at one-year timepoints. Changes in lumbar lordosis and segmental lordosis were significantly greater after ALIF (4.6° vs. -0.6°, P=0.05; 4.7° vs. -0.7°, P<0.05) at one year (mean time, 366±20 days). At one year or greater, there was a greater reduction in mean VAS-leg score in TLIF patients (3.4 vs. 0.6, P<0.05) and ODI score (16.2 vs. 5.4, P<0.05). Similar outcomes were seen for VAS-back, SF-12 Physical Health, and SRS-30 Function/Activity. SF-12 Mental Health scores were found to be lower in patients undergoing TLIF (-3.5 vs. 2.7, P<0.05). ALIF demonstrated a superior method of increasing lumbar and segmental lordosis. TLIF was utilized more in patients with higher pre-operative VAS-leg pain scores and therefore, showed a greater magnitude of VAS-leg pain improvement. TLIF also demonstrated a greater improvement in ODI scores despite similar baseline scores, suggesting a possible enhanced functional outcome.

MO935HEALTH RELATED QUALITY OF LIFE AFTER KIDNEY TRANSPLANTATION: A SYSTEMATIC REVIEW

Abstract Background and Aims Health-related quality of life (HRQOL) is becoming an increasingly important outcome in kidney transplantation besides graft function and patient survival. It is of clinical interest to understand whether kidney transplant recipients (KTRs) experience better HRQOL after the invasive procedure and to what extent they can restore HRQOL. To the best of our knowledge, the last relevant systematic review and meta-analysis, which compared HRQOL in KTRs to patients on dialysis, only included eligible publications before 2005. With the considerable improvement in nephrology care and the exponential increase in studies focusing on HRQOL in the past two decades, an updated overview of the current literature is needed. Moreover, to gain a comprehensive picture of HRQOL in KTRs, it is also necessary to include relevant comparison groups such as the general population and healthy controls to understand to which extent HRQOL can be restored to a “pre-CKD” level. To describe HRQOL in KTRs, this systematic review summarizes the published literature to date that compared HRQOL of KTRs with other relevant populations (i.e. patients receiving dialysis, patients on the waiting list for kidney transplantation, patients with chronic kidney disease [CKD] not receiving dialysis, the general population, and healthy controls) and themselves before kidney transplantation. To avoid potential bias, we include studies using different HRQOL questionnaires. Method A thorough literature search was conducted in PubMed, EMBASE, Web of Science, and COCHRANE Library. Studies were included when published between January 2000 and October 2020, and when comparing HRQOL in adult KTRs to the relevant populations. The quality of included studies was assessed using the Risk Of Bias Assessment tool for Non-randomized Studies (RoBANS). Prespecified study characteristics and HRQOL scores were extracted. Due to substantial clinical and methodological heterogeneity, results were summarized in a narrative manner without pooled estimates. Results 44 studies comprising 6929 KTRs were included in this systematic review. The mean age of KTRs in all studies ranged from 29 to 72 years old, and only two studies were conducted in an elderly cohort (≥ 65 years). The majority of studies (93%) reported a higher percentage of male KTRs (median 62%; range 43% to 86%). The average time of HRQOL-measurements after kidney transplantation ranged from 1 to 234 months after the operation. 50% of the studies had a cross-sectional design; 32% had a prospective, and 18% had a retrospective design; and 55% of the studies were single-center studies. While taken into account study heterogeneity, KTRs reported a higher HRQOL after kidney transplantation compared to pre-transplantation and compared to patients receiving dialysis with or without being on the waiting list, especially in disease-specific domains (i.e. burden of kidney disease, effect of kidney disease, and symptoms). Additionally, KTRs had comparable to marginally higher HRQOL compared to patients with CKD stage 3-5. When compared to healthy controls or the general population, KTRs reported similar HRQOL in the first one or two years after kidney transplantation, and lower physical HRQOL and lower to comparable mental HRQOL with an average post-transplant time longer than two years. Conclusion Patients generally report better HRQOL after successful kidney transplantation compared to themselves before the operation and patients receiving dialysis with or without waiting for kidney transplantation, but HRQOL of KTRs does not return to “pre-CKD” HRQOL levels. Future studies investigating risk factors for impaired HRQOL are needed to maximize the long-term benefit of kidney transplantation.

MO023FLANK PAIN HAS A MAJOR NEGATIVE IMPACT ON HEALTH-RELATED QUALITY OF LIFE IN ADPKD: THE CYSTIC I STUDY

Abstract Background and Aims ADPKD is the most common inherited kidney disease in man, a major cause of end-stage renal disease and is a significant medical and economic burden worldwide. However, the impact of this major disease on the quality of life of patients with preserved kidney function has not been systematically explored. Method The CYSTic I study was an observational, prospective study designed to study the natural history of ADPKD in adult patients with preserved kidney function (eGFR ≥30 ml/min/1.73m2). 465 patients were recruited from six expert centres across Europe (Belgium, France, Italy, Netherlands, Spain and UK) with baseline data recorded including HR-QoL (Health-Related Quality of Life) incorporating a Kidney Disease QOL short form questionnaire (KDQoL-SF v1.3), MRI for Total Kidney Volume (TKV) and DNA for genotyping. The cohort was stratified by baseline eGFR, Ht-TKV or genotype and correlated with HR-QOL scores. Bivariate and multivariate analyses were applied to examine the relationship between HRQoL and variables of interest. KDQoL-SF scores were calculated using an online tool provided by the Rand organisation. Results Mean age of the participants was 44 years, 54.6% were female with a mean eGFR of 77ml/min/1.73m2 and Ht-TKV of 849ml/m. 72.3% had PKD1 mutations. 32.5% of participants reported flank pain that was not significantly correlated with eGFR, Ht-TKV or genotype. Of all the variables examined, flank pain showed significant negative associations with the highest number of KDQoL-SF subscale scores assessed (12/20). Conclusion Our results indicate that flank pain is common, likely to be under-reported in routine care but has a major negative impact on patient-reported quality of life.

Comprehensive ambulatory monitoring during immunotherapy in patients with advanced melanoma: A prospective trial (CAMP-IT).

TPS1589 Background: The emergence of immune checkpoint inhibitors has improved survival outcomes for patients with advanced melanoma. However, these treatment modalities are also associated with specific immune-related toxicities. These are often reversible after prompt recognition and initiation of appropriate management, but can result in severe morbidity and hamper health-related quality of life (HRQoL) if left undetected. Hence, accurate and regular monitoring of these patients is critical. Recent advances in mHealth technologies and the rapidly expanding armamentarium of wearable devices allow for real-time objective (vital signs and physical activity) data and patient-reported outcome measurement (PROMs) collection and, hence, serve this purpose. We hypothesize that collection of real-time objective data adds to the early detection of disease- and treatment-related adverse events. The primary objective of this study is to determine the feasibility of collecting real-time PROMs, vital signs, and physical activity data in advanced melanoma patients receiving immunotherapy using a comprehensive ambulatory monitoring platform (CAMP) that consists of a smartphone app, activity monitor, digital thermometer, and online dashboard for physicians. Methods: In this prospective multi-center trial, patients (n = 50) with advanced melanoma, scheduled to receive immunotherapy with immune checkpoint inhibitors, and with access to a smartphone are eligible for inclusion. Consenting patients will be asked to wear a FitBit Versa 2.0 during waking hours, collect daily temperature measurements using a Withings Smart Temporal thermometer, and answer weekly toxicity questionnaires (NCI PRO-CTCAE) using the smartphone app for the duration of the study (12 weeks). Primary outcome is feasibility in terms of (i) participation rates, (ii) wear-time, (iii) compliance rates with in-app questionnaires and temperature measurements, and (iv) satisfaction with the platform. Secondary exploratory outcomes include associations between CAMP-derived parameters and clinical outcomes: performance status (PS), HR-QoL scores (EORTC QLQ-C30 questionnaire), unplanned hospitalizations, physician-assessed adverse events, and 1-year survival outcomes. PS and HR-QoL will be rated at baseline, mid-study, and end-of-study. The occurrence of adverse events will be documented up to 12 months from baseline. Survival outcomes will be compared to a propensity score matched group from the Netherlands Cancer Registry. Accrual has started in February 2021. Clinical trial information: NL8827.

Quality Of Life and Associated Factors in Latin American Patients Undergoing Total Hip Arthroplasty.

The objective of this study was to determine whether individuals with hip osteoarthritis who undergo THA have higher HRQOL scores than those awaiting the procedure; An additional aim was to investigate associated factors exerting an impact on HRQOL. A cross-sectional study was conducted. Participants were divided into two groups: pre-THA and post-THA. Functional capacity was assessed using the Harris Hip Score, and HRQOL was measured using a validated and adapted version of the WOMAC questionnaire. A multivariate analysis of the WOMAC results was used to identify the main variables associated with HRQOL in both groups. The post-THA group had higher HRQOL scores (100.4 ± 88.5) than the pre-THA group (197.8 ± 54.1). The domains Pain (68.0 ± 19.0 versus 34.7 ± 30.8), Stiffness (61.2 ± 28.9 versus 29.9 ± 33.1), and Physical Activity (68.6 ± 16.1 versus 36.6 ± 30.2) also had higher scores in the post-THA group. Pain was the variable most frequently associated with the increase in post-THA HRQOL scores. Other variables such as occupation, time of diagnosis, joint function, and body weight also had an impact on the HRQOL of both groups. 1. Individuals who underwent THA had higher scores for HRQOL compared to those still awaiting the procedure. 2. Pain was the variable most strongly associated with quality of life.

Clinical, radiological and HRQoL outcomes after selective thoracic fusion with minimum 15-year follow-up.

The purpose of the study was to provide a 15-year natural history evaluation of the radiographic appearance of uninstrumented compensatory lumbar curves in patients who had undergone selective thoracic fusion (STF) for scoliosis, measure any changes in health-related quality of life scores (HRQoL) and compare them with controls matched for age, gender and body-mass index (BMI). STF group included 43 female adolescent idiopathic scoliosis (AIS) patients who underwent STF with mean age 33(27-42) years and a mean follow-up of 18.7 (15-28) years, mean BMI 22(18-29). Preop, early postop and follow-up radiographs were reviewed for behavior of lumbar curves. Control group included a random selection of healthy volunteers with no history of back pain and with mean age 33(27-41), and mean BMI 22(17-33). HRQoL scores were compared between two groups in latest f/up. Radiographs including low dose biplanar imaging with EOS were used to measure disc heights and assess for radiographic evidence of degenerative changes. Various parameters were statistically compared. Posterior fusion was performed in all 43, with all pedicle screws used in 41 and all-hook constructs in 2. Main thoracic curve correction was improved from pre-op to early-post-op and maintained at latest f/up (55.6°-16.1°-16.9°). Spontaneous lumbar curve correction (SLCC) was also maintained beyond 15years (39.9°-16.6°-17.1°). Two patients developed coronal decompensation following surgery, but improved with time and were well compensated at final follow-up. Mean HRQoL scores, self-image and mental health scores were higher in STF group than control group (p < 0.05). SRS-22r pain and function, Oswestry Disability Index and Numeric Rating Scale, marital status, number of children were similar between the groups(p > 0.05). All disc heights except L5-S1 were significantly lower in STF group (p < 0.05). There was no significant difference between the groups for degenerative changes in the latest radiographs. In this group of patients, the uninstrumented lumbar curve spontaneously corrected and the correction was maintained after 18years following surgery using STF. Mild degenerative changes were seen radiographically and HRQoL scores suggest that the psychological-functional well-being are quite good in the long term in AIS patients who have undergone STF when compared with an age-gender-BMI-matched population.

Does the Level of Pedicle Subtraction Osteotomy Affect the Surgical Outcomes in Ankylosing Spondylitis-Related Thoracolumbar Kyphosis With the Same Curve Pattern?

Study Design:A retrospective study.Objective:To investigate the effect of pedicle subtraction osteotomy (PSO) level on the surgical outcomes in ankylosing spondylitis-related thoracolumbar kyphosis with the same curve pattern.Methods:ankylosing spondylitis (AS) patients with thoracolumbar kyphosis, who underwent 1-level lumbar PSO between March 2006 and June 2017, were retrospectively reviewed. Criteria for curve-matched thoracolumbar kyphosis were: (1) have same level of preoperative apex (pre-apex); (2) have similar global kyphosis (GK, the angle between the superior/inferior endplate of the maximally tilted upper and lower end vertebra) (the difference of GK less than 15˚). The radiographic parameters measured were sagittal vertical axis (SVA, the horizontal distance between the C7 plumb line and the posterosuperior corner of the S1), GK, thoracic kyphosis (TK, the angle between the T5 superior endplate and the T12 inferior endplate), lumbar lordosis (LL, the angle between the L1 and S1 superior endplate), sacral slope (SS, the angle between the sacral endplate and the horizontal line), pelvic tilt (PT, the angle between the vertical and the line joining the midpoint of the sacral plate and hip axis), and pelvic incidence (PI, the angle between the line vertical to the superior margin of S1 and the line connecting the sacral plate midpoint with the hip joint axis). All of these parameters and health-related quality of life (HRQoL, evaluated by preoperative and the last follow-up questionnaires including ODI and VAS) scores were collected before surgery and at the last follow-up. According to their osteotomy level, patients were devided into 2 sub-groups (L1 group and L2 group), and differences of these mentioned parameters between 2 groups were compared.Results:26 curve-matched patients were recruited with a mean follow-up of 37.2 months. All patients improved significantly after surgery in HRQoL scores (VAS 1.6 vs 5.4, P < 0.001; ODI 11.9 vs 26.4, P < 0.001). Except for TK and PI, those radiographic parameters were also observed to be significantly changed after surgery. Compared to L2 group, PSO at L1 may have larger correction of TK (ΔTK -6.8 vs -0.3°, P = 0.164), PI (ΔPI -7.4 vs -0.7°, P = 0.364) and smaller correction of SVA (ΔSVA -105.3 vs -128.5 mm, P = 0.096), LL (ΔLL -31.1 vs -43.0°, P = 0.307) and SS (ΔSS 6.9 vs 12.2°, P = 0.279) but had no statistical significance.Conclusion:The results of this investigation showed that in AS-related thoracolumbar kyphosis patients with the same curve pattern, the different levels of osteotomy had little effect on the improvement of surgical outcomes. However, osteotomy at L2 is more likely to obtain a larger correction of SVA compared to osteotomy at L1.

The age-related impact of surviving sarcoma on health-related quality of life: data from the SURVSARC study

BackgroundHealth-related quality of life (HRQoL) data of sarcoma survivors are scarce and the impact of age remains unclear. The aims of this population-based study were to (i) compare HRQoL scores amongst three age-groups [adolescents and young adults (AYA, aged 18-39 years), older adults (OA, aged 40-69 years) and elderly (aged ≥70 years)]; (ii) compare HRQoL of each sarcoma survivor age group with an age- and sex-matched normative population sample; (iii) determine factors associated with low HRQoL per age group.MethodsDutch sarcoma survivors, who were 2-10 years after diagnosis, were invited to complete the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30-questions questionnaire on HRQoL.ResultsIn total, 1099 survivors (58% response rate) completed the questionnaire: 186 AYAs, 748 OAs and 165 elderly. The median time since diagnosis for all patients was 5.2 years. Bone sarcomas were seen in 41% of AYAs, 22% of OAs and in 16% of elderly survivors (P < 0.01). AYA and OA survivors reported statistically significant and clinically meaningful worse physical, role, cognitive, emotional and social functioning compared with a matched norm population, which was not the case for elderly survivors. AYAs reported significantly worse scores on emotional and cognitive functioning compared with OA and elderly survivors. Malignant peripheral nerve sheath tumour, osteosarcoma and chordoma were the subtypes of which survivors reported the lowest HRQoL scores in comparison with the norm. For all age groups, chemotherapy, having a bone sarcoma and having comorbidities were most frequently associated with low scores on HRQoL subscales, whereas a shorter time since diagnosis was not.ConclusionIn this nationwide sarcoma survivorship study, the disease and its treatment had relatively more impact on the HRQoL of AYA and OA survivors than on elderly survivors. These results emphasise the need for personalised follow-up care that not only includes risk-adjusted care related to disease relapse, but also age-adjusted care.

Knowledge, Attitude and Quality of Life among Type 2 Diabetic Patients in Palestine

The purpose of this study is to investigate the association between knowledge and attitude on quality of lifeamong diabetic patients type 2 in Palestine.Method: A cross-sectional quantitative descriptive study that contains a sample of 120 diabetic patientswere selected from Nablus hospitals and outpatient clinics to assess the level of knowledge and attitudestoward self-care and health-related quality of life.Results: The mean score of Michigan Diabetic Knowledge Test was 8.04±2.48 and this consider a moderatelevel. Of 120 diabetic patients, 27.5% had poor knowledge; 65.5% had moderate knowledge, and only 6.6% had good knowledge. The mean for attitude score of all respondents was 125.4±10.57 and this considera positive attitude. There was a significant positive association between knowledge, attitude with HRQol(P=0.00). The mean for HRQoL score was 0.72 and it represented a moderate level of quality of life.Conclusion: Level of knowledge scores and HRQol were moderate and attitude toward the disease waspositive in type 2 diabetic patients in Palestine, and there was a strong association between knowledge,attitude on HRQoL.