Health-related Quality Of Life Ratings Research Articles

Effectiveness of a community-based multicomponent lifestyle intervention (the ADA programme) to improve the quality of life of French breast cancer survivors: protocol for a pragmatic cluster randomised trial and embedded qualitative study

IntroductionBreast cancer survivors (BCSs) are often faced with multiple mental and physical sequelae and are at increased risk of emotional distress, degraded health-related quality of life (HRQoL), chronic pain and...

Health-Related Quality of Life in Kindergarten Children with Developmental Language Disorder: Child-Mother Agreement.

Language disorders are associated with difficulties in various aspects of life, such as academic and social functioning, resulting in impaired health-related quality of life (HRQoL). Most studies use a parent proxy method to assess HRQoL. Since HRQoL refers to the subjective experience of an individual, it is necessary to assess children's perspectives along with their mothers'. The aim of the current study is to explore HRQoL rating agreement between children and their mothers, since the literature on other conditions suggests that discrepancies seem to reflect their different perspectives. Thus, 53 Greek-speaking children diagnosed with DLD attending kindergarten and their mothers completed, respectively, self-report and parent proxy PedsQLTM questionnaires. Mothers reported significantly better HRQoL than their children with developmental language disorder (DLD) in all HRQoL domains (p < 0.001). Poor agreement was revealed after comparing the scores from both responders, both in abstract domains, such as emotional functioning, as well as in more observable ones, such as physical health (ICC ranged from -0.05 to 0.07). Bland-Altman plots also showed poor agreement on HRQoL. Our results expand on the already known, from other conditions, importance of evaluating children's subjective experience of their HRQoL in kindergarten children with DLD. A multi-informant approach is ideal, and clinicians should prioritize children's view about their lives even when they are kindergarten-age. This approach could inform interventions focusing not only on language skills but also on other areas where it is necessary, depending on the child's subjective experience combined with the maternal perspective.

Validation of the Wound-QoL-17 and the Wound-QoL-14 in a European sample of 305 patients with chronic wounds.

The Wound-QoL assesses the impact of chronic wounds on patients' health-related quality of life (HRQoL). A 17-item and a shortened 14-item version are available. The Wound-QoL-17 has been validated for multiple languages. For the Wound-QoL-14, psychometric properties beyond internal consistency were lacking. We aimed to validate both Wound-QoL versions for international samples representing a broad range of European countries, including countries for which validation data had yet been pending. Patients with chronic wounds of any aetiology or location were recruited in Austria, Lithuania, the Netherlands, Poland, Slovakia, Spain, Switzerland and Ukraine. Psychometric properties were determined for both Wound-QoL versions for the overall sample and, if feasible, country-wise. We included 305 patients (age 68.5 years; 52.8% males). Internal consistency was high in both Wound-QoL-17 (Cronbach's α: 0.820-0.933) and Wound-QoL-14 (0.779-0.925). Test-retest reliability was moderate to good (intraclass correlation coefficient: 0.618-0.808). For Wound-QoL-17 and Wound-QoL-14, convergent validity analyses showed highest correlations with global HRQoL rating (r = 0.765; r = 0.751) and DLQI total score (r = 0.684; r = 0.681). Regarding clinical data, correlations were largest with odour (r = -0.371; r = -0.388) and wound size (r = 0.381; r = 0.383). Country-wise results were similar. Both Wound-QoL versions are valid to assess HRQoL of patients with chronic wounds. Due to its psychometric properties and brevity, the Wound-QoL-14 might be preferrable in clinical practice where time is rare. The availability of various language versions allows for the use of this questionnaire in international studies and in clinical practice when foreign language patients are being treated.

Sociodemographic and health risk factors associated with health-related quality of life among adults living in Puerto Rico in 2019: a cross-sectional study

BackgroundPuerto Rico, a US territory, faces numerous challenges adversely affecting public health, including poverty, a fragile healthcare system, inadequate infrastructure, a debt crisis, and vulnerability to climate change-related natural disasters. The impact of these factors on the Health-Related Quality of Life (HRQoL) measure has not been comprehensively evaluated. Only two studies have assessed HRQoL, with the latest conducted in 2011, prior to recent events that could affect public health. This study aimed to assess the HRQoL and associated sociodemographic and health risk factors among adults living in Puerto Rico in 2019.MethodsPrevalence and 95% confidence intervals were used to describe HRQoL and its associations with sociodemographic and health-related variables among adults living in Puerto Rico who answered the Behavioral Risk Factor Surveillance System (BRFSS) survey (n = 4,944) in 2019. Multivariable logistic regression models were developed to identify which of these variables were more likely to be associated with each of the four core HRQoL questions (HRQoL-4), expressed as prevalence odds ratios with 95% confidence intervals adjusted for potential confounders.ResultsThrough a comprehensive multivariable analysis, we uncovered significant risk factors – increasing number of chronic conditions, advanced age, and low income – associated with poor HRQoL among adults living in Puerto Rico. Specifically, our findings suggest that individuals with an increasing number of chronic conditions were more likely to report poor HRQoL across all 4 domains. As the number of reported chronic conditions increases by one, the odds of reporting having: fair/poor general health increased by a factor of 2.24 (POR: 2.24, 95% CI: 2.08–2.41), physical health impairment increased by a factor of 1.93 (POR: 1.93, 95% CI: 1.78–2.08), mental health impairment increased by a factor of 1.90 (POR: 1.90, 95% CI: 1.78–2.02) and activity limitation increased by a factor of 1.27 ( POR: 1.27, 95% CI: 1.13–1.42). Advancing age was associated with all domains of poor HRQoL, except for the mental health domain for which we observed higher rates of poor HRQoL among the younger population (POR: 4.76, 95% CI: 2.4–9.1).ConclusionThis paper shows that the prevalence of poor HRQoL has not improved compared to the only previous study of HRQoL of Puerto Rico in the last decade. We also found that poor HRQoL is associated with having multiple chronic conditions in adults living in Puerto Rico. This may be a consequence of a decline in health services after natural disasters and socioeconomic downturns on the island. The study emphasizes the need for targeted interventions and ongoing monitoring of the population’s HRQoL over time to reach vulnerable subgroups, especially those with chronic conditions, advanced age, and low income, in order to reduce health disparities in Puerto Rico.

Adult spinal deformity correction surgery using age-adjusted alignment thresholds: clinical outcomes and mechanical complication rates. A systematic review of the literature.

Adult spinal deformity (ASD) surgery gives good clinical outcomes but has a high rate of mechanical complications (MC). In 2016, Lafage described the age-adjusted alignment thresholds (AAAT) to adapt the correction in relation to patient's age proposing less aggressive corrections for the elderly population. The aim of this review was to clarify the effectiveness of AAAT to achieve good health-related quality of life (HRQoL) and their relationship with post-operative MC. We performed a review of the literature, including articles reporting data on post-operative HRQoL and MC rates in relation to the AAAT. Data were stratified according to whether they matched the AAAT, dividing the population in undercorrected (U), matched (M) and overcorrected (O). The quality of the included studies was assessed using the GRADE and MINORS systems. Six articles reporting data from 1,825 patients were included. The different categories (U, M and O) had homogeneous pre-operative sagittal parameters (p > 0.05) that became statistically different after surgeries (p < 0.05). Proximal junctional kyphosis (PJK) was more frequent in the O group compared to U (p = 0.05). Post-operative HRQoL parameters were similar in the 3 groups (p > 0.05). The quality of the included studies was generally low with a high bias risk. The results extrapolated from this review are interesting, as for the same HRQoL the U group had a lower MC rate. Unfortunately, the results are inconsistent, mainly because of the low quality of the included studies and the lack of reporting of some important patient- and surgery-related factors.

Change in health-related quality of life and functional disability over time post-concussion in youth.

Concussions can have detrimental on children's cognitive, emotional, behavioral, and/or social functioning. We sought to examine changes in health-related quality of life (HRQOL) and functional disability from pre-injury to 1-week post-concussion, and to symptom resolution among youth ages 11-17 with a concussion. In this prospective, longitudinal cohort study, 83 concussed youth, ages 11-17, self-reported post-concussion symptoms daily as well as HRQOL and functional disability at baseline (pre-injury, retrospective), 1-week post-concussion, and symptom resolution. We modeled changes in overall and sub-scale HRQOL and functional disability scores over time from pre-injury to 1-week post-concussion and from 1-week post-concussion to symptom resolution using a piecewise linear mixed model, adjusting for potential covariables. Estimated fixed effects with a corresponding adjusted coefficient (beta), along with their 95% confidence intervals are presented. Overall HRQOL worsened from pre-injury to 1-week post-injury (β = -5.40, 95%CI -9.22, -1.58) but did not change from 1-week post-injury to symptom resolution. Physical HRQOL worsened from pre-injury to 1-week post-injury (β = -9.90, 95%CI -14.65, -5.14) but improved from 1-week post-injury to symptom resolution (β = 1.64, 95%CI 0.50, 2.78), while psychosocial HRQOL showed no change over time. Functional disability worsened from pre-injury to 1-week post-injury (β = 8.36, 95%CI 5.93, 10.79) but with no change from 1-week post-injury to symptom resolution. Youth with symptom duration > 14days reported worse HRQOL and functional disability than those who recovered in ≤ 14days and greater daily post-concussion symptom scores were associated with worse HRQOL and functional disability. Concussions have a negative impact on overall and physical HRQOL and functional disability in youth acutely post-injury. Ratings of HRQOL could be used to inform clinical treatment decisions to assist with the recovery process.

Measuring Quality of Life in Residential Aged Care Using the EQ-5D-5L: A Cross-Sectional Study on the Impact of Cognition Level and Proxy Perspective on Interrater Agreement

Quality of life (QoL) is an important outcome in aged care, but self-report is not always possible due to the high prevalence of cognitive impairment in older aged care residents. This study aims to assess the impact of family member proxy perspective (proxy-proxy or proxy-person) on interrater agreement with resident self-report by different cognition levels. The influence of proxy perspective and cognition level is a significant gap in the extant literature which this study seeks to address. A cross-sectional study was undertaken with residents classified into cognition subgroups according to the Mini Mental State Examination. Residents completed the self-report EQ-5D-5L, a well-established generic measure of health-related quality of life (HRQoL). Family member proxies completed EQ-5D-5L proxy version 1 (proxy-proxy perspective, where the proxy responds based on their own opinions) and proxy version 2 (proxy-person perspective, where the proxy responds as they believe the person would). Interrater agreement was assessed using the concordance correlation coefficient (CCC) for utility scores and the weighted kappa for dimension-level responses. Sixty-three residents (n = 22 no cognitive impairment, n = 27 mild impairment, and n = 14 moderate impairment) and proxies participated. EQ-5D-5L utility scores were lower for proxies compared with residents (self-report = 0.522, proxy-proxy = 0.299, and proxy-person = 0.408). Interrater agreement with self-report was higher for proxy-person (CCC = 0.691) than for proxy-proxy (CCC = 0.609). Agreement at the dimension level was higher for more easily observable dimensions, such as mobility, compared to less observable dimensions, such as anxiety/depression. Resident self-reported and proxy family member-reported HRQoL assessments, using the EQ-5D-5L, are different but may be more closely aligned when the proxy is specifically guided to respond from the person’s perspective. Further research is needed to address the impact of divergences in self-report and proxy-report ratings of HRQoL for quality assessment and economic evaluation in aged care.

Participant-Level Analysis of the Effects of Interventions on Patient-Reported Outcomes in Patients With Chronic Ankle Instability.

Intervention studies for chronic ankle instability (CAI) often focus on improving physical impairments of the ankle complex. However, using an impairments-focused approach may miss psychological factors that may mediate function and recovery. Patient-reported outcome (PRO) measures can be used to assess several dimensions of the health-related quality of life (HRQoL) and deliver enhanced patient-centered care. Therefore, the purpose of this investigation was to evaluate group-level improvements in HRQoL and treatment response rates following various interventions in patients with CAI. Cross-sectional. Data from 7 previous studies were pooled by the chronic ankle instability outcomes network for participant-level analysis, resulting in 136 patients with CAI. Several interventions were assessed including balance training, gait biofeedback, joint mobilizations, stretching, and strengthening, with treatment volume ranging from 1 to 4weeks. Outcome measures were PROs that assessed ankle-specific function (Foot and Ankle Ability Measure), injury-related fear (Tampa Scale of Kinesiophobia and Fear Avoidance Belief Questionnaire), and global well-being (Disablement in the Physically Active); the PROs assessed varied between studies. Preintervention to postintervention changes were evaluated using separate Wilcoxon signed-rank tests and effect sizes, and a responder analysis was conducted for each PRO. Significant, moderate to large improvements were observed in PROs that assessed ankle-specific function, injury-related fear, and global well-being following intervention (P < .001). Responder rates ranged from 39.0% to 53.3%, 12.8% to 51.4%, and 37.8% for ankle specific function, injury-related fear, and global well-being, respectively. Various interventions can lead to positive improvements in HRQoL in patients with CAI. Treatment response rates at improving HRQoL are similar to response rates at improving impairments such as balance, further reinforcing the need for individualized treatment approaches when treating a patient with CAI.

Association of ethnicity and adaptive functioning with health-related quality of life in pediatric myelomeningocele.

The purpose of this study was to evaluate associations of ethnicity and adaptive function with health-related quality of life (HRQOL) in youths with spina bifida myelomeningocele (SBM). Participants included Hispanic (n = 75) and non-Hispanic White (n = 86) children and adolescents with SBM. Participants completed ratings of adaptive function and SBM-specific HRQOL. A series of linear multiple regression models was computed to investigate whether ethnicity moderates the relation between adaptive function and HRQOL. Results showed that greater adaptive function was associated with higher HRQOL. While no relations were found between ethnicity and HRQOL, a significant interaction was observed between adaptive function and ethnicity over and above other terms. Although groups did not differ on HRQOL at lower levels of adaptive function, Hispanic participants rated higher HRQOL relative to non-Hispanic White participants at higher levels of adaptive function. Further analysis showed this was true of both nonmotor and motor aspects of adaptive function. Results suggested complex relations between ethnicity and adaptive function with HRQOL, highlighting the importance of optimizing adaptive functioning in youth with SBM.

Supporting Attention in Children with Epilepsy (SPACE): Pilot of a psychoeducational intervention

PurposeChildren with epilepsy are at high risk for impairing symptoms of attention deficit hyperactivity disorder (ADHD), especially difficulties with attention. There is limited evidence regarding the use of psychological interventions for children with epilepsy and attention difficulties. We developed and piloted a novel psychoeducational intervention –Supporting Attention in Children with Epilepsy (SPACE). MethodsEligible children with epilepsy (8–13 years) and difficulties with attention underwent a comprehensive psychological assessment and took part in a single-arm trial of the SPACE intervention. The first three sessions of SPACE took place in groups of 3–5 children and two psychologists. The final three sessions involved one psychologist meeting the child and parent(s). The child’s teacher joined for one of the final three sessions. The first group of participants participated in the intervention in person. Subsequent groups took part online due to COVID-19-related restrictions. Measures of ADHD -inattention symptoms (parent and teacher), executive functioning (child, parent, and teacher), and epilepsy-specific and general Health-Related Quality of Life (HRQOL) (child and parent) were administered before and three months after completing the intervention. ResultsTwenty-seven children with epilepsy expressed an interest in participating. Sixteen children met eligibility criteria and participated in a single-arm pilot of the intervention. All 16 participants completed the intervention. Pre- and post-intervention data were available for 15 of the 16 children. Improvement in function was noted on all measures and reached statistical significance for child ratings of executive functioning (p = 0.030) and HRQOL (p = 0.043), and parent-rated child HRQOL (p < 0.001). Qualitative feedback regarding content and acceptability was positive. ConclusionA psychoeducational intervention for children with epilepsy and difficulties with attention can lead to improved executive functioning and HRQOL. Such an intervention may be a useful first-line intervention for children with epilepsy at risk for or diagnosed with ADHD and/or be used in combination with pharmacological treatment with children with epilepsy and ADHD. However, more robustly designed studies are needed.

Illness perceptions and health literacy are strongly associated with health-related quality of life, anxiety, and depression in patients with coronary heart disease: results from the EUROASPIRE V cross-sectional survey.

To (1) Describe the sociodemographic and risk factor profiles of a sample of patients with coronary disease, (2) Explore associations between illness perceptions and health literacy with sociodemographic characteristics and risk factors, health-related quality of life (HRQoL), anxiety, and depression. Conducted as part of the ESC Prevention of CVD Project and EUROASPIRE V survey, patients were consecutively and retrospectively identified 6 months to 2 years after an acute event or elective procedure from 12 countries and interviewed. Three thousand four hundred and eight participants (76% male, mean age 64 years) were recruited, 16% were smokers, 38% obese, 60% physically inactive, and 41% hypertensive. Forty percent had attended cardiac rehabilitation. More threatening illness perceptions were associated with female gender (P < 0.0001), lower income (P < 0.0001), lower education (P = 0.02), obesity (P < 0.0001), sedentary behaviour (P < 0.0001), and diabetes (P < 0.0001). Poorer health literacy was associated with obesity (P = 0.02) and sedentary behaviour (P = 0.0001). Threatening illness perceptions were strongly associated with anxiety, depression, and poorer ratings of HRQoL after multivariable adjustment (all P < 0.001). Poor health literacy was associated with anxiety and depression (P < 0.0001) and poorer ratings of HRQoL (HeartQol scores P = 0.03). Results were consistent across regions of Europe, age, gender, and socio-economic strata. Interventions like cardiac rehabilitation should be targeted at vulnerable groups given the strong associations between more threatening illness perceptions, lower health literacy, lower HRQoL, and higher levels of anxiety and depression. The delivery and content of these interventions should be accessible for those with low health literacy.

193 CONNECTED HEALTH SUSTAINING HOME STAY IN DEMENTIA (CHESS): HEALTH-RELATED QUALITY OF LIFE IN CAREGIVERS OF PEOPLE WITH DEMENTIA

Abstract Background Caregivers of People with Dementia (PwD) can experience high levels of distress, which can negatively affect their physical and psychological well-being. We explored factors that influence Health-Related Quality of Life (HRQoL) of caregivers of PwD over 12 months. Methods Fifty-two PwD and their informal caregivers were recruited by convenience sampling to 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 caregiver HRQoL (measured by the EuroQol Visual Analogue Scale; EQVAS) with factors in four domains: 1) Psychological Well-Being (PWB; measures of anxiety, depression, and caregiver distress); 2) Social Capital and Resources (SCR; incorporating access to community-based health services, transportation needs, education level, occupation and living situation of the PwD, and 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, and indices of dependence of PwD. Results In the PWB domain, greater levels of caregiver depression (p&amp;lt;0.001) and a greater change over time in caregiver distress related to PwD behavioural disturbances (p=0.008) predicted lower caregiver HRQoL. In the PFH domain, HRQoL was lower for caregivers of PwD who were frail (p=0.04) and had severe comorbidities (p=0.037). None of the factors within the SCR or MED domains reached significance. Conclusion This longitudinal analysis elucidates potential predictors of HRQoL in caregivers of PwD. In particular, caregiver depression and distress related to behavioural disturbances in PwD were shown to significantly impact on HRQoL ratings. Caregiver interventions should be tailored to include support for psychological well-being.

Pain, depressive symptoms, and health-related quality of life among survivors of pediatric hematopoietic stem cell transplant.

Pediatric hematopoietic stem cell transplant (HCT) is an intensive medical procedure associated with significant late effects, of which pain is a prominent example. While pain is associated with increased depressive symptoms and health-related quality-of-life (HRQoL) impairments in other pediatric chronic illness populations, associations between these variables are not well understood in pediatric HCT. Clarifying these associations may inform clinical interventions to improve health outcomes following pediatric HCT. This study aimed to investigate the relations between pain intensity, depressive symptoms, and HRQoL in survivors of pediatric HCT. Fifty-one survivors of pediatric HCT (Mage =14.3years, standard deviation [SD]=4.3; 58.8% male; 80.4% White) completed self-report measures of pain intensity, depressive symptoms, and HRQoL. Demographic and disease information was collected via demographic forms and medical record review. Path analysis was used to examine hypothesized associations between pain intensity, depressive symptoms, and HRQoL. Analyses revealed direct effects of pain intensity on depressive symptoms (estimate [Est.]=.23, p<.001) and HRQoL (Est.=-.2, p=.04), and direct effects of depressive symptoms on HRQoL (Est.=-.68, p<.001). Depressive symptoms also mediated the relationship between pain intensity and HRQoL (Est.=-.16, p=.006). Greater pain intensity was associated directly with increased depressive symptoms and indirectly with HRQoL through depressive symptoms. Results of this study suggest that multitargeted cognitive behavioral interventions that address pain and depressive symptoms may improve HRQoL ratings in survivors of pediatric HCT.

Late effects, long‐term problems and unmet needs of cancer survivors

Great efforts are being made in cancer treatment, with impressive improvement in survival. The situation concerning research and care for long-term problems and late effects in the growing population of cancer survivors, however, is unsatisfactory. Therefore, in the FiX survey 1348 disease-free survivors about 4 years after diagnosis of different cancer types were asked to rate existing burdens and support received for them along a list of 36 potential problems. Health-related quality of life (HRQoL) was assessed with the EORTC QLQ-C30. Determinants of burdens were explored using logistic regression analysis. While cancer survivors' global HRQoL, physical and role function ratings were comparable or better than age- and sex-matched reference values of the general population, emotional and cognitive function was worse, especially among women (P< .01). Most frequently reported problems with at least moderate burden were loss of physical performance (36.3%), fatigue (35.1%), sexual problems (34.7%), sleep problems (34.1%), arthralgia (33.8%), anxiety (28.0%), neuropathy (25.6%), memory problems (23.0%) and concentration problems (21.9%). Burdened survivors often rated received support as poor, especially regarding support for problems that physicians might consider medically nonthreatening, or for which no effective pharmacologic or medical treatment is known. Determinants for burden included higher age, female gender, having ever received chemotherapy and overweight/obesity. In conclusion, a significant number of cancer survivors suffer from long-term or late effects and have unmet care needs. Awareness of health care professionals should be increased for these issues. The results of our study can contribute to the development of targeted survivorship plans.

A Multisite Study Investigating Child and Parent Proxy Reported Quality of Life in Children With Cleft Lip and/or Palate.

This observational, multisite cohort study explored health-related quality of life (HRQoL) in children with cleft lip and/or palate (CL/P), including interrater agreement and ratings for this group relative to clinical cutoff scores and published means for healthy and chronically ill children. Participants (338 children ages 8-10 years, 45.9% male and their parents, 82.0% female) across 6 sites completed the Pediatric Quality of Life Inventory Generic Core Scales (PedsQL). Intraclass correlation revealed poor interrater agreement for most HRQoL domains. Although ratings were generally higher than those expected for children with a chronic illness, child ratings were below healthy means for school functioning, and parent proxy ratings were below healthy means for all domains except physical functioning. Lower ratings consistent with chronic illness means were found for self-reported emotional and psychosocial functioning in children with cleft lip and palate (CLP), as well as parent proxy-reported emotional, school, and psychosocial functioning for children with cleft palate (CP). Scores were most likely to be in the clinical range for children with CP for social, school, and total functioning. Although parent proxy report provides important information about observed functioning, poor interrater agreement indicates that both child and parent proxy reported HRQoL should be included in outcomes assessment for CL/P. HRQoL ratings may be higher for children with CL/P compared to youth with other chronic illnesses, but psychosocial functioning may be negatively impacted when compared with healthy youth, particularly for emotional, social, and school functioning in children with CLP or CP.

Evaluation of an online intervention for improving stroke survivors' health-related quality of life: A randomised controlled trial.

The aim of this trial was to evaluate the effectiveness of an online health behaviour change intervention-Prevent 2nd Stroke (P2S)-at improving health-related quality of life (HRQoL) amongst stroke survivors at 6 months of follow-up. A prospective, blinded-endpoint randomised controlled trial, with stroke survivors as the unit of randomisation, was conducted between March 2018 and November 2019. Adult stroke survivors between 6 and 36 months post-stroke with capacity to use the intervention (determined by a score of ≥4 on the Modified Rankin Scale) and who had access and willingness to use the internet were recruited via mail-out invitations from 1 national and 1 regional stroke registry. Participants completed baseline (n = 399) and 6-month follow-up (n = 356; 89%) outcome assessments via computer-assisted telephone interviewing (CATI). At baseline the sample had an average age of 66 years (SD 12), and 65% were male. Randomisation occurred at the end of the baseline survey; CATI assessors and independent statisticians were blind to group allocation. The intervention group received remote access for a 12-week period to the online-only P2S program (n = 199; n = 28 lost at follow-up). The control group were emailed and posted a list of internet addresses of generic health websites (n = 200; n = 15 lost at follow-up). The primary outcome was HRQoL as measured by the EuroQol Visual Analogue Scale (EQ-VAS; self-rated global health); the outcome was assessed for differences between treatment groups at follow-up, adjusting for baseline measures. Secondary outcomes were HRQoL as measured by the EQ-5D (descriptive health state), diet quality, physical activity, alcohol consumption, smoking status, mood, physical functioning, and independent living. All outcomes included the variable 'stroke event (stroke/transient ischaemic attack/other)' as a covariate, and analysis was intention-to-treat. At 6 months, median EQ-VAS HRQoL score was significantly higher in the intervention group than the control group (85 vs 80, difference 5, 95% CI 0.79-9.21, p = 0.020). The results were robust to the assumption the data were missing at random; however, the results were not robust to the assumption that the difference in HRQoL between those with complete versus missing data was at least 3 points. Significantly higher proportions of people in the intervention group reported no problems with personal care (OR 2.17, 95% CI 1.05-4.48, p = 0.0359) and usual activities (OR 1.66, 95% CI 1.06-2.60, p = 0.0256) than in the control group. There were no significant differences between groups on all other secondary outcomes. The main limitation of the study is that the sample comprises mostly 'well' stroke survivors with limited to no disability. The P2S online healthy lifestyle program improved stroke survivors' self-reported global ratings of HRQoL (as measured by EQ-VAS) at 6-month follow-up. Online platforms represent a promising tool to engage and support some stroke survivors. Australian New Zealand Clinical Trials Registry ACTRN12617001205325.

Use of quality-of-life instruments for people living with HIV: a global systematic review and meta-analysis.

IntroductionDue to the effectiveness of combined antiretroviral therapy and its growing availability worldwide, most people living with HIV (PLHIV) have a near‐normal life expectancy. However, PLHIV continue to face various health and social challenges that severely impact their health‐related quality‐of‐life (HRQoL). The UNAIDS Global AIDS Strategy discusses the need to optimize quality‐of‐life, but no guidance was given regarding which instruments were appropriate measures of HRQoL. This study aimed to review and assess the use of HRQoL instruments for PLHIV.MethodsWe conducted a global systematic review and meta‐analysis, searching five databases for studies published between January 2010 and February 2021 that assessed HRQoL among PLHIV aged 16 years and over. Multivariable regression analyses were performed to identify factors associated with the choice of HRQoL instruments. We examined the domains covered by each instrument. Random‐effects meta‐analysis was conducted to explore the average completion rates of HRQoL instruments.Results and discussionFrom 714 publications, we identified 65 different HRQoL instruments. The most commonly used instruments were the World Health Organization Quality‐of‐Life‐ HIV Bref (WHOQOL‐HIV BREF)—19%, Medical Outcome Survey‐HIV (MOS‐HIV)—17%, Short Form‐36 (SF‐36)—12%, European Quality‐of‐Life Instrument‐5 Dimension (EQ‐5D)—10%, World Health Organization Quality‐of‐Life Bref (WHOQOL BREF)—8%, Short Form‐12 (SF‐12)—7% and HIV/AIDS Targeted Quality‐of‐Life (HAT‐QOL)—6%. There were greater odds of using HIV‐specific instruments for middle‐ and low‐income countries (than high‐income countries), studies in the Americas and Europe (than Africa) and target population of PLHIV only (than both PLHIV and people without HIV). Domains unique to the HIV‐specific instruments were worries about death, stigma and HIV disclosure. There were no significant differences in completion rates between different HRQoL instruments. The overall pooled completion rate was 95.9% (95% CI: 94.7−97.0, I 2 = 99.2%, p < 0.01); some heterogeneity was explained by country‐income level and study type.ConclusionsA wide range of instruments have been used to assess HRQoL in PLHIV, and the choice of instrument might be based on their different characteristics and reason for application. Although completion rates were high, future studies should explore the feasibility of implementing these instruments and the appropriateness of domains covered by each instrument.

Oral health-related quality of life of patients rehabilitated with fixed and removable implant-supported dental prostheses.

Dental implants have become a mainstream treatment approach in daily practice, and because of their high survival rates over time, they have become the preferred treatment option for prosthetic rehabilitation in many situations. Despite the relatively high predictability of implant therapy and high costs to patients, patient perceptions of success and patient‐reported outcome measures have become increasingly significant in implant dentistry. Increasing numbers of publications deal with oral health‐related quality of life and/or patient‐reported outcome measures. The aim of this paper was to provide an overview of the available evidence on oral health‐related quality of life of fully and partially dentate patients rehabilitated with fixed and removable implant‐supported dental prostheses. A comprehensive electronic search was performed on publications in English up to 2021. A selection of standardized questionnaires and scales used for the evaluation of oral health‐related quality of life were analyzed and explained. The analysis encompassed three aspects: a functional evaluation of oral health‐related quality of life, an esthetic assessment of oral health‐related quality of life, and a cost‐related evaluation of oral health‐related quality of life for rehabilitation with dental implants. The data demonstrated that the preoperative expectations of patients markedly affected the outcomes perceived by the patients. As expected, reconstructions supported by implants substantially improved the stability of conventional dentures and allowed improved function and patient satisfaction. However, from a patient's perspective, oral health‐related quality of life was not significantly greater for dental implants compared with conventional tooth‐supported prostheses. The connection of the implants to the prostheses with locators or balls indicated high oral health‐related quality of life. The data also suggest that patient expectation is not a good predictor of treatment outcome. In terms of esthetic outcomes, the data clearly indicate that patients’ perceptions and clinicians' assessments differed, with those of clinicians yielding higher standards. There were no significant differences found between the esthetic oral health‐related quality of life ratings for soft tissue‐level implants compared with those for bone‐level implants. Comparison of all‐ceramic and metal‐ceramic restorations showed no significant differences in patients’ perceptions in terms of esthetic outcomes. Depending on the choice of outcome measure and financial marginal value, supporting a conventional removable partial denture with implants is cost‐effective when the patient is willing to invest more to achieve a higher oral health‐related quality of life. In conclusion, the oral health‐related quality of life of patients rehabilitated with implant‐supported dental prostheses did not show overall superiority over conventional prosthetics. Clinicians' and patients' evaluations, especially of esthetic outcomes, are, in the majority of cases, incongruent. Nevertheless, patient‐reported outcomes are important in the evaluation of function, esthetics, and the cost‐effectiveness of treatment with implant‐supported dental prostheses, and should be taken into consideration in daily practice.

Patient-Reported Outcome Measures in Adult Patients Diagnosed with Epilepsy Being Treated with Perampanel.

BackgroundEpilepsy is a complex disorder that can affect patients’ medical, psychological, and social well-being. The purpose of this study was to evaluate the patient-reported outcome (PRO) measures of health-related quality of life (HRQoL), satisfaction, and adherence in adult patients diagnosed with epilepsy treated with perampanel in the United States (US).MethodsA US-based, multicenter, observational cross-sectional survey was completed by 61 patients taking perampanel with or without other antiseizure medications (ASMs). Respondents were ≥18 years old, had a physician-confirmed diagnosis of epilepsy, used perampanel for ≥4 months, and provided informed consent. Patients responded to questions concerning their demographic characteristics, treatment history, experiences before perampanel, experiences while taking perampanel, HRQoL, treatment satisfaction, and medication adherence.ResultsPatients (N=61) were 42.8 years old on average; majority were female (63.9%) and white (75.4%). Mean time on perampanel was 2.5 years, with sodium channel blockers often (55.7%) used concomitantly with perampanel. Patients reported, on average, 5.5 (standard deviation [SD]=13.2) seizures/month after initiating perampanel, whereas these same patients reported experiencing 20.4 (SD=60.0) seizures/month prior to perampanel. When comparing their experience on perampanel with their experience with previous ASMs, more patients “strongly agreed” that perampanel allowed them to live a more normal life (36.1% vs 27.5%) and worked as intended if they missed taking a dose (16.4% vs 7.8%). Average satisfaction scores were high, with ratings of 71.8 for effectiveness, 84.0 for convenience, and 71.9 for global satisfaction (0–100 scores). Perampanel use was associated with improvements in HRQoL and fewer symptoms of depression and anxiety. The majority of patients were adherent (62.3%) to perampanel.DiscussionPerampanel use was associated with reductions in number of seizures, better HRQoL, and high adherence rates. These results provide initial evidence that perampanel can be an effective, tolerable, and valid option for patients with epilepsy in the real world.

Health-Related Quality of Life following Cytoreductive Radical Prostatectomy in Patients with De-Novo Oligometastatic Prostate Cancer.

Simple SummaryRecent retrospective data indicate a survival benefit of surgical removal of the prostate in patients with oligometastatic prostate cancer as part of a multimodal therapeutic regime. However, the impact of radical prostatectomy (RP) on patient’s health-related quality of life (HRQOL) in this scenario has not been evaluated yet. In a contemporary and well-balanced cohort, we compared the self-assessed HRQOL of patients with oligometastatic prostate cancer with patients with locally confined prostate cancer two years postoperatively. In multivariate analysis, we found no significant difference in postoperative HRQOL and urinary continence recovery in patients with de-novo oligo-metastatic compared to patients with locally confined prostate cancer.(1) Background: local treatment of the primary tumor has become a valid therapeutic option in de-novo oligo-metastatic prostate cancer (PC). However, evidence regarding radical prostatectomy (RP) in this setting is still subpar, and the effect of cytoreductive RP on postoperative health-related quality of life (HRQOL) is still unclear. (2) Methods: for the current study, patients with de-novo oligo-metastatic PC (cM1-oligo), defined as ≤5 bone lesions in the preoperative staging, were included, and matched cohorts using the variables age, body-mass index (BMI), and pT-stage were generated. Patient-reported outcome measures (PROMS) were assessed pre- and postoperatively using the validated EORTC-QLQ-C30, IIEF-5, and ICIQ-SF questionnaires. The primary endpoint for univariate and multivariable analysis was good general HRQOL defined by previously validated cut-off values. (3) Results: in total, 1268 patients (n = 84 (7%) cM1-oligo) underwent RP between 2012 and 2020 at one tertiary care center. A matched cohort of 411 patients (n = 79 with oligo-metastatic bone disease (cM1-oligo) and n = 332 patients without clinical indication of metastatic disease (cM0)) was created. The median follow-up was 25mo. There was no significant difference in good general HRQOL rates between cM1-oligo-patients and cM0-patients before RP (45.6% vs. 55.2%, p = 0.186), and at time of follow-up (44% vs. 56%, p = 0.811). Global health status (GHS) worsened significantly in cM0-patients compared to baseline (−5, p = 0.001), whereas GHS did not change significantly in cM1-oligo-patients (+3.2, p = 0.381). In multivariate analysis stratified for good erectile function (IIEF5 > 18; OR 5.722, 95% CI 1.89–17.36, p = 0.002) and continence recovery (OR 1.671, 95% CI 1.03–2.70, p = 0.036), cM1-oligo was not an independent predictive feature for general HRQOL (OR 0.821, 95% CI 0.44–1.53, p = 0.536). (4) Conclusions: in this large contemporary retrospective analysis, we observed no significant difference in HRQOL in patients with the oligometastatic bone disease after cytoreductive radical prostatectomy, when compared to patients with localized disease at time of surgery.