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Purpose Dealing with a child who suffers from functional abdominal pain (FAP) is a major challenge for the child's parents. However, little is known about the quality of life (QoL) of this group of parents. Therefore, this cross-sectional study aimed to provide a comprehensive analysis of parental QoL among parents seeking treatment for their child's abdominal pain. Methods 133 parents of 7-13-year-old children diagnosed with FAP reported on their health-related QoL (HRQoL), as assessed by the SF-12, and on caregiver-related QoL, as assessed by two CHQ-PF50 scales (emotional impact, time impact). T tests were used to compare the parents' scores on these measures with reference scores. Subgroups which were at risk of impairment were defined by cut-off scores. Determinants of parental QoL were identified by hierarchical regression analyses. Results While the parents showed significantly poorer mental health compared to population-based reference samples (d=0.33-0.58), their physical health did not differ. However, parents were severely strained with respect to the time impact and emotional impact of their child's health (d=0.33-1.58). While 12.7-27.9% of the parents were at risk of poor HRQoL, 60.6-70.1% were highly strained due to the demands of their role as caregivers. Physical and mental health were best explained by parents' psychiatric symptoms, while parents' perception of their child's impairment additionally determined the high time and emotional impact. Conclusions Physical HRQoL is not impaired in the majority of parents seeking treatment for their child's functional abdominal pain. However, the time demands and worries due to the child's pain deserve specific attention. Psychosocial interventions for a child's FAP should include information provided to the parents about coping with time constraints and emotional impact. Further prospective studies are warranted.

Purpose Lower quality of life, especially in the physical domain (Physical-QOL), is common in patients after hematopoietic stem cell transplantation (HSCT). However, few studies explore changes in the Physical-QOL, i.e., physical symptoms, in everyday life of patients following HSCT. The present study addresses this gap by examining patient daily physical symptoms and their predictors in terms of demographic and clinical characteristics. Methods Physical symptoms were reported by 188 patients (56.9% men; aged 47.6 ± 13.4 years) for 28 consecutive days after post-HSCT hospital discharge. Multilevel modeling was used to investigate fixed and random effects for physical symptom changes over time. Results The results indicated that the initial level of physical symptoms (immediately after hospital discharge) systematically decreased over 28 days. Treatment toxicity (WHO scale; β = 0.09, p < .01) and baseline depressive symptoms (CES-D scale; β = 0.06, p < .01) were associated with the initial level of physical symptoms. Patients with more depressive symptoms before HSCT and with more adverse treatment effects presented with more physical symptoms immediately after hospital discharge. The type of transplant, diagnosis, and conditioning regimen differentiated the course of physical symptoms. Patients with leukemias and other myeloid neoplasms (β = 0.05, p <. 01), after allogeneic HSCT (β = -0.06, p < .01), and with non-myeloablative conditioning (β = -0.09, p < .01) showed a significant lower decrease in symptoms over time. Patients with multiple myeloma presented with the most rapid improvement (β = -.03, p <.05). Conclusions The findings suggest a heterogeneous and rather positive response to HSCT. Treatment-related conditions occurred to be a significant predictor of the intensity of change in physical functioning after HSCT.

Background COVID-19 has spread rapidly throughout the world, causing thousands of illnesses and deaths. To fight this pandemic, almost all governments and health authorities have focused on prevention. In March or April, most countries’ officials imposed home quarantine and lockdown measures nationwide. Purpose This study sought to assess health-related quality of life (HRQoL) and anxiety levels among people in Portugal under mandatory home quarantine due to the COVID-19 pandemic. The results were compared to the general Portuguese population’s HRQoL before the COVID-19 outbreak. This research also aimed to understand the factors that can influence the respondents’ HRQoL. Methods A sample of Portugal’s population quarantined at home ( n  = 904) filled in an online survey comprising the Generalized Anxiety Disorder 7-item and the EQ-5D-5L and other questions about sociodemographic characteristics, feelings, duties and activities during the quarantine. The sample was weighted to mirror the general population’s gender, age and education. Descriptive analyses and correlation coefficients were used to evaluation the respondents’ anxiety and HRQoL. Generalised linear models were estimated to identify determinants of HRQoL during the COVID-19 quarantine. Results The results show that individuals quarantined at home reported higher anxiety and lower HRQoL levels and that people with more anxiety tended to have a lower HRQoL. Females and elderly individuals experienced the highest levels of anxiety and poorest HRQoL. In addition, HRQoL during the quarantine can be explained by various occupational and attitudinal variables, as well as sociodemographic variables. Conclusion Individuals’ mental health should be taken into consideration during pandemics or other emergency situations. Anxiety and other factors can decrease people’s HRQoL, in conjunction with the pandemic’s social and economic consequences.

Objective Many factors influence pre-hospital delays in the event of stroke. This study aimed to develop and evaluate a comprehensive educational program for decreasing pre-hospital delays in high-risk stroke population. Methods We enrolled 220 high-risk stroke population and caregivers from six urban communities in Harbin from May 2013 to May 2015, and randomly divided them into intervention and control groups. We implemented a comprehensive educational program (intervention group), comprising public lectures, instructional brochures, case videos, simulations, and role-playing from May 2013 to May 2015. We delivered conventional oral education in the control group. We compared stroke pre-hospital delay behavioral intention (SPDBI), pre-hospital stroke symptom coping test (PSSCT), and stroke pre-symptoms alert test (SPSAT) results between the groups before and 6, 12, and 18 months after health intervention. Results There were significant differences between before and after intervention (P <0.01). SPDBI, PSSCT, and SPSAT scores were significantly different between the groups (P <0.01). The interaction between time and intervention method was significant (P <0.01). According to multivariate repeated measures analysis of variance, SPDBI, PSSCT, and SPSAT scores were significantly different at each time after intervention (P <0.05). Conclusion The comprehensive educational program was significantly effective in decreasing SPDBI, improving knowledge, enhancing stroke pre-symptoms alert, and reducing the possibility of pre-hospital delays.

Objectives To investigate the patient-reported multidimensional gastrointestinal symptoms predictors of generic health-related quality of life (HRQOL) in pediatrie patients with functional gastrointestinal disorders (FGIDs). Methods The Pediatrie Quality of Life Inventory™ (PedsQL™) Gastrointestinal Symptoms Scales and PedsQL™ 4.0 Generic Core Scales were completed in a 9-site study by 259 pediatrie patients with functional constipation, functional abdominal pain (FAP), or irritable bowel syndrome (IBS). Gastrointestinal Symptoms Scales measuring stomach pain, stomach discomfort when eating, food and drink limits, trouble swallowing, heartburn and reflux, nausea and vomiting, gas and bloating, constipation, blood in poop, and diarrhea were identified as clinically important symptom differentiators from healthy controls based on prior findings, and subsequently tested for bivariate and multivariate linear associations with overall HRQOL. Results Gastrointestinal symptoms were differentially associated with decreased HRQOL in bivariate analyses for the three FGIDs. In predictive models utilizing hierarchical multiple regression analyses controlling for age, gender, and race/ethnicity, gastrointestinal symptoms differentially accounted for an additional 47, 40, and 60 % of the variance in patient-reported HRQOL for functional constipation, FAP, and IBS, respectively, reflecting large effect sizes. Significant individual gastrointestinal symptoms predictors were identified after controlling for the other gastrointestinal symptoms in the FGID-specific predictive models. Conclusions Gastrointestinal symptoms represent potentially modifiable predictors of generic HRQOL in pediatrie patients with FGIDs. Identifying the condition-specific gastrointestinal symptoms that are the most important predictors from the patient perspective facilitates a patientcentered approach to targeted interventions designed to ameliorate impaired overall HRQOL.

Purpose Prior studies suggest that specialist care associates with improved health-related quality of life (HRQL) in asthmatic patients. However, there are limited studies focused on differences in HRQL among subspecialties. The aim of this study was to assess the differences in HRQL between adult asthmatic patients treated in pneumology or allergy practices, and to estimate to what extent the differences in HRQL can be explained by sociodemographic, clinical or psychological characteristics of patients from each specialty. Methods We recruited adult asthmatic outpatients from allergy and pneumology practices. Information on sociodemographic, clinical and psychological characteristics was collected, and HRQL was assessed with generic and disease-specific questionnaires. HRQL was compared between groups adjusting for sociodemographic, clinical and psychological characteristics. Results A total of 287 asthmatic patients participated in the study (105 from pneumology and 182 from allergy). Patients treated by pneumologists reported significantly poorer HRQL in physical dimensions of generic questionnaire and all dimensions of disease-specific questionnaire. Pneumology patients were older (p < .001) and had a lower education level (p < .001); a higher number of patients were in a non-active employment situation (p = .003) and had worse pulmonary function (p < .001), longer duration of disease (p = .020), higher prevalence of obesity (p < .001) and uncontrolled asthma (p < .001), and a higher rate of previous absenteeism (p = .001). Depression and the use of cognitive avoidance coping were also higher among pneumology patients (p = .050 and p = .022, respectively). There were not significant differences in HRQL between pneumology and allergy patients after adjustment for these sociodemographic, clinical and psychological characteristics. Conclusions Asthmatic patients treated by pneumologists reported poorer HRQL than patients treated by allergists, but this outcome is attributed to differences in several sociodemographic, clinical and psychological characteristics between the two groups of patients.

Introduction Patient-reported outcome measures (PROs) were originally developed for comparing groups of people in clinical trials and population studies, and the results were used to support treatment recommendations or inform health policy, but there was not direct benefit for the participants providing PROs data. However, as the experience in using those measures increased, it became obvious the clinical value in using individual patient PROs profiles in daily practice to identify/monitor symptoms, evaluate treatment outcomes and support shared decision-making. A key issue limiting successful implementation is clinicians' lack of knowledge on how to effectively utilize PROs data in their clinical encounters. Methods Using a change management theoretical framework, this paper describes the development and implementation of three programs for training clinicians to effectively use PRO data in routine practice. The training programs are in three diverse clinical areas (adult oncology, lung transplant and paediatrics), in three countries with different healthcare systems, thus providing a rare opportunity to pull out common approaches whilst recognizing specific settings. For each program, we describe the clinical and organizational setting, the program planning and development, the content of the training session with supporting material, subsequent monitoring of PROs use and evidence of adoption. The common successful components and practical steps are identified, leading to discussion and future recommendations. Results The results of the three training programs are described as the implementation. In the oncology program, PRO data have been developed and are currently evaluated; in the lung transplant program, PRO data are used in daily practice and the integration with electronic patient records is under development; and in the paediatric program, PRO data are fully implemented with around 7,600 consultations since the start of the implementation. Conclusion Adult learning programs teaching clinicians how to use and act on PROs in clinical practice are a key steps in supporting patient engagement and participation in shared decision-making. Researchers and clinicians from different clinical areas should collaborate to share ideas, develop guidelines and promote good practice in patientcentred care.

Purpose Patient-reported outcomes (PROs) can promote patient-centered care in multiple ways: (1) using an individual patient’s PRO data to inform his/her management, (2) providing PRO results from comparative research studies in patient educational materials/decision aids, and (3) reporting PRO results from comparative research studies in peer-reviewed publications. Patients and clinicians endorse the value of PRO data; however, variations in how PRO measures are scored and scaled, and in how the data are reported, make interpretation challenging and limit their use in clinical practice. We conducted a modified Delphi process to develop stakeholder-engaged, evidence-based recommendations for PRO data display for the three above applications to promote understanding and use. Methods The Consensus Panel included cancer survivors/caregivers, oncologists, PRO researchers, and application-specific end-users (e.g., electronic health record vendors, decision aid developers, journal editors). We reviewed the data display issues and their evidence base during pre-meeting webinars. We then surveyed participants’ initial perspectives, which informed discussions during an in-person meeting to develop consensus statements. These statements were ratified via a post-meeting survey. Results Issues addressed by consensus statements relevant to both individual and research data applications were directionality (whether higher scores are better/worse) and conveying score meaning (e.g., none/mild/moderate/severe). Issues specific to individual patient data presentation included representation (bar charts vs. line graphs) and highlighting possibly concerning scores (absolute and change). Issues specific to research study results presentation included handling normed data, conveying statistically significant differences, illustrating clinically important differences, and displaying proportions improved/stable/worsened. Conclusions The recommendations aim to optimize accurate and meaningful interpretation of PRO data.