Cortisol, oxytocin, and quality of life in major depressive disorder Abstract Purpose Quality of life (QoL) is greatly impaired in major depressive disorder (MDD). These impairments are not fully accounted for by symptom severity, may persist beyond depressive episodes, and are a risk factor for poor outcomes. MDD is often associated with prominent neuroendocrine changes and increased risk of chronic disease. However, there is a lack of research examining whether biological factors are related to QoL in MDD. This research examined relationships between cortisol, oxytocin, symptom severity, and QoL in MDD. Methods Sixty adults meeting DSM-5 criteria for MDD and 60 healthy controls provided morning plasma samples which were analysed for cortisol and oxytocin levels, and completed measures of QoL and psychopathology. Results Participants with MDD had lower QoL than controls. Cortisol correlated negatively with overall QoL and all QoL domains. Oxytocin correlated positively with overall QoL, and Psychological and Social-Relationships domains. Additionally, cortisol levels were inversely related to psychological QoL, and oxytocin was positively related to social QoL, after controlling for symptom severity and demographic variables. Conclusions This study provides novel evidence linking neuroendocrine pathways to particular domains of QoL in MDD. The results indicate that activity of the hypothalamic–pituitary–adrenal axis is linked to poor psychological QoL, and that oxytocin is important to social QoL, independently of severity of psychopathology. Biopsychosocial approaches to QoL associated with mental health conditions may lead to greater understanding of the underlying mechanisms and to improved, tailored interventions.

Patient-reported outcomes as predictors of survival in patients with bowel cancer: a systematic review Abstract Introduction The prognostic value of patient-reported outcomes (PROs) has been determined in some cancers, but a focussed review in colorectal cancer (CRC) has not yet been conducted. We systematically reviewed PRO predictors of CRC patient survival. Methods We searched four electronic databases (from inception to May 2018), reference lists and professional organisations to identify studies reporting pre-treatment PRO predictors of overall survival (OS) or progression-free survival (PFS) in CRC identified through univariate or multivariate models. Two reviewers independently applied inclusion criteria and extracted data on study characteristics, median and 1-year survival rates, PROs assessed and model results. Results In 25 of 27 studies (n = 12,544), at least one PRO was significantly associated with survival. Physical functioning, fatigue, pain and appetite loss predicted OS more often than other PROs in metastatic disease (19/27 studies). One study explored PRO predictors in early-stage CRC, finding emotional well-being and mood predicted OS. In mixed-stage samples (7/27 studies), physical functioning predicted OS more often than other PROs. Few studies modelled PFS, for which few PROs had predictive value. Conclusions Physical and psychological functioning, pain, fatigue and appetite loss had prognostic significance above and beyond clinical predictors in CRC. Routine monitoring of these PROs may allow earlier detection and amelioration of problems, which may improve quality of life and perhaps extend survival. More research is needed to determine prognostic value of PROs in early-stage CRC, and prognostic significance of changes in PRO scores.

Impact of comorbidities and functional impairment on 5-year loss of health utility in patients with lower-limb osteoarthritis in the KHOALA cohort Abstract Purpose To examine the respective and combined impact of “hypothetical” functional impairment (FI) and burden of comorbidities accrual on a 5-year risk of health utility (HU) loss in osteoarthritis (OA). Methods Participants of the Knee and Hip Osteoarthritis Long-term Assessment (KHOALA) study with a 5-year follow-up were included. FI, number of comorbidities and HU were measured annually by the WOMAC, Functional Comorbidity Index and Short-Form 6D, respectively. We estimated the population risk of HU loss (PRD: population risk difference, PRR: population risk ratio) under hypothetical FI and comorbidities using the parametric G-formula. Then, mediation analysis investigated the causal mechanism of comorbidities on HU through FI by estimating total, direct and indirect effects. Results We examined data from 767 patients (68.8% women; 61.6 years). The estimated 5-year risk of HU loss was 47.5% [41.9; 52.2] under natural course and 24.9% [15.5; 34.2] when imposing “Patient acceptable function and No comorbidity” corresponding to a PRD = − 22.6 [− 26.5; − 21.2] and a PRR = 0.5 [0.4; 0.6]. The estimated total risk of HU loss comparing “Two comorbidities” versus “No comorbidity” was significant without mediation effect of FI: Total = 10.1% [6.8; 12.9]; direct = 8.0% [2.7; 13.1]; indirect = 2.1% [− 2.0; 5.2]. Conclusions FI and comorbidities are important and independent determinants of HU loss in patient with OA. Half of cases (50%) of HU loss during 5 years could be avoided by preventing comorbidities (30%) and limiting FI under patient acceptable function (20%). Caregivers should additionally pay close attention to the prevention and the treatment of comorbidities in routine management of OA.

Self-management and health related quality of life in persons with chronic obstructive pulmonary disease Abstract Purpose Although it is well-known that persons with COPD experience lower health related quality of life (HRQoL), little is known about the importance of self-management related domains on HRQoL in persons with COPD. Therefore, the purpose of this study is to examine associations between self-management related domains and HRQoL, adjusting for sociodemographic and clinical characteristics, self-efficacy, and sense of coherence. Methods Cross-sectional data of 225 persons with COPD, recruited from a hospital register, were analyzed. Self-management related domains were measured using the Health education impact questionnaire (heiQ) and HRQoL was measured using the St. George’s Respiratory Questionnaire (SGRQ). Multiple linear regression analysis was used. Results The final models showed significant associations between the self-management domains constructive attitudes and approaches and emotional distress and HRQoL. Dyspnea, number of comorbidities, self-efficacy, and the various self-management related domains explained 51.3 to 55.1% of the variance in HRQoL. Conclusions The findings suggest that addressing self-management related domains, in addition to self-efficacy, dyspnea, and comorbidities, may be of importance for enhancement of HRQoL in persons with COPD.

The moderating role of age in the relationship between different stressors and the quality of life of the relatives of people with intellectual disabilities Abstract Purpose The level of support needed for adaptive functioning and behavioral problems of individuals with intellectual disabilities (ID) can be a source of stress for caregivers. The aim of this study was to explore the moderating role of caregivers’ age on the associations between these stressors and quality of life (QoL) of the family caregivers. As these sources of stress in people with ID can coexist, the triple interaction between stressors and age was also examined. Methods 208 relatives (mean age = 50.98 years, SD = 12.86) of people with ID participated in the research. Participants answered a questionnaire with sociodemographic variables, measures of stressors (level of support for adaptive functioning of the people with ID and behavioral problems) and measures of QoL (WHOQOL-BREF). Results The association between the level of support needed for adaptive functioning and lower QoL was only significant among older relatives, whereas the association between behavioral problems and lower QoL was only significant among younger relatives. A three-way interaction between behavioral problems, level of support needed, and age indicated that the association between the level of support for adaptive functioning and QoL in older relatives was greater when there were higher levels of behavioral problems. Conclusions The role of caregivers’ age in their QoL differs depending on the nature of the stressor, and an accumulation of stressors can have a particularly negative impact on older caregivers. Interventions should be adapted for caregivers of different ages and take into account the particular sources of stress they have to cope with.

Differential item functioning of the CAHPS® In-Center Hemodialysis Survey Abstract Purpose End-stage renal disease patients’ experience of care is an integral part of the assessment of the quality of the care provided at hemodialysis centers and is needed to promote patient choice, quality improvement, and accountability. The purpose of this study is to evaluate the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems (ICH-CAHPS®) survey and its equivalence in different age, gender, race, and education subgroups. Methods The ICH-CAHPS survey was administered to 1454 patients from 32 dialysis facilities. For the characteristics compared, the sample had 756 participants younger than 65 years old, 739 men, 516 Black, 567 White, and 970 with less than high school diploma. Three different patient experience constructs were studied including nephrologist’s communication and caring, quality of care and operations, and providing information to patients. We used item response theory analysis to examine the possibility of differential item functioning (DIF) by patient age, gender, race, and education separately after controlling for the other DIF characteristics and additional confounding variables including survey mode, mental, and general health status as well as duration on dialysis. Results The three constructs studied were unidimensional and no major DIF was observed on the composites. Some non-equivalences were observed when confounders were not controlled for, suggesting that such covariates can be important factors in understanding the possibility of disparity in patients’ experience. Conclusions The ICH-CAHPS is a promising survey to elicit hemodialysis patients’ experience that has good psychometric properties and provides a standardized tool for assessing age, gender, race, or education disparity.

Disabled life expectancy with and without stroke: a 10-year Japanese prospective cohort study Abstract Purpose A stroke is a debilitating condition that can cause lifelong disability, severely limiting the ability of individuals to perform daily activities. In Japan, strokes are the fourth leading cause of death; however, no previous studies have examined the influence of strokes on a disabled or disability-free life for older Japanese residents. This study aims to address this gap. Methods The study used data from the Nihon University Japanese Longitudinal Study of Aging (NUJLSOA) and incidence-based multistate life tables to estimate disabled and disability-free life expectancy based on the stroke status of Japanese residents aged 65 and older. Results Japanese stroke survivors aged 65 who experienced an initial disability-free state could expect to live approximately 3 fewer total years of life, 4–5 fewer years in a disability-free state, and 1–2 more years in a disabled state compared to those without history of a stroke (p < 0.05). For those disabled at the beginning of the survey interval, the differences between individuals with and without stroke history were also similar to those disability-free at the beginning of the survey interval (2–4 and 5–6 fewer total and disability-free years, respectively) (p < 0.05). The same pattern was observed for older age groups. Conclusion Older adults who have experienced a stroke could experience a shorter total life expectancy, shorter disability-free life expectancy, and longer disabled life expectancy than those who have not experienced a stroke. These results can inform policymakers and rehabilitation practitioners on stroke survivor long-term care needs and their post-stroke health status.

The effect of whole body vibration on health-related quality of life in patients with chronic conditions: a systematic review Abstract Purpose To identify the effects of whole body vibration (WBV) on health-related quality of life (HRQOL) in patients with chronic conditions. Methods Five databases (the Cochrane Library, PubMed, Medline, EBSCO, and Web of science) were searched (from inception until April 30, 2019) for original articles. All studies were randomized controlled trials reporting the effects of WBV on HRQOL. Two independent reviewers extracted trial data and assessed the risk of bias using the risk of bias tool recommended by the Cochrane Back Review Group. Results Of the 349 articles that were screened, 17 articles, including 763 participants with various chronic conditions, met the inclusion criteria. Six studies reported significant improvements in HRQOL. No evidence was observed to suggest that WBV was more effective than other types of exercises. The study participants, exercise protocols, HRQOL instruments, study duration, and frequency as well as amplitude of WBV varied across the studies. Meta-analysis was not conducted due to the heterogeneity of study designs and outcome measures. Conclusions This study has demonstrated that WBV may improve HRQOL in patients with chronic conditions. However, the evidence was not strong enough to warrant recommendation and thus further high-quality studies with larger sample sizes and longer intervention durations are needed.

Preliminary development of proxy-rated quality-of-life scales for children and adults with Niemann-Pick type C Abstract Objectives Niemann-Pick disease type C (NPC) is a rare life-limiting disease for which there is no cure. No scales currently exist to measure the impact of medication, physical therapy or clinical trials. The aim of this study was to develop age-appropriate Quality-of-Life (QoL) scales to measure the impact of NPC on children and adults. Design Scale development study using a phenomenological approach to data generation and analysis. Methods Fourteen interviews were conducted with people living with NPC and/or their parents/carers. Themes were generated and examined against an existential-phenomenological theory of wellbeing. A matrix was constructed to represent the phenomenological insight gained on participants’ subjective experiences and a bank of items that were related to their QoL was developed. Results NPC quality-of-life questionnaires for children (NPCQLQ-C) and adults (NPCQLQ-A) proxy prototype scales were produced and completed by 23 parents/carers of children (child age mean = 8.61 years) and 20 parents/carers of adults (adult age = 33.4 years). Reliability analysis resulted in a 15-item NPCQLQ-C and a 30-item NPCQLQ-A, which showed excellent internal consistency, Cronbach’s α = 0.925 and 0.947, respectively. Conclusion The NPCQLQ-C and NPCQLQ-A are the first disease-specific QoL scales to be developed for people living with NPC. This novel approach to scale development values the experiential, real life impact of living with NPC and focused on the lived-experiences and impact on QoL. The scales will enable healthcare professionals and researchers to have a better understanding and quantifiable measurement of the impact of living with NPC on a patient’s daily life.

Association between Type D personality and outcomes in patients with non-ischemic heart failure Abstract Purpose The “distressed” (Type D) personality trait has been reported to be over-represented in patients with heart failure (HF) compared to the background population and may provide prognostic information for mortality. We examined the association between Type D personality and outcomes in the DANISH trial (The Danish Study to Assess the Efficacy of Implantable Cardioverter Defibrillators in Patients with Non-ischemic Systolic Heart Failure on Mortality). Methods The DANISH trial included a total of 1116 patients with non-ischemic HF on guideline-recommended therapy. Type D personality was assessed with the Type D Scale (DS14) at baseline and investigated through follow-up accordingly. Multivariable Cox proportional hazard models were used to compare hazard ratios (HR) of cardiovascular and all-cause mortality. Results Type D personality assessment was completed by 873 (78%) patients at baseline and Type D personality was found in 120 (14%) patients. The median follow-up was 67 months (interquartile range [IQR] 48–83). Among patients with versus without Type D personality, 22% versus 19% died from all-cause yielding similar incidence rates of 4.62 (95% CI 3.14–6.87) versus 3.95 (95% CI 3.37–4.66) per 100 person-years. The adjusted risk of all-cause mortality was not significantly different in patients with versus without Type D personality with an adjusted HR of 1.31 (95% CI 0.84–2.03, p = 0.23) with similar results for cardiovascular death (HR 1.46 (95% CI 0.88–2.44, p = 0.15). Conclusion Type D personality was not significantly associated with increased risk of all-cause mortality or cardiovascular death in patients with non-ischemic HF.