Health and Quality of Life Outcomes

Little is known about the quality of life of parents and families of preterm infants after discharge from the neonatal intensive care unit (NICU). Our aims were (1) to describe the impact of preterm birth on parents and families and (2) and to identify potentially modifiable determinants of parent and family impact. We surveyed 196 parents of preterm infants <24 months corrected age in 3 specialty clinics (82% response rate). Primary outcomes were: (1) the Impact on Family Scale total score; and (2) the Infant Toddler Quality of Life parent emotion and (3) time limitations scores. Potentially modifiable factors were use of community-based services, financial burdens, and health-related social problems. We estimated associations of potentially modifiable factors with outcomes, adjusting for socio-demographic and infant characteristics using linear regression. Median (inter-quartile range) infant gestational age was 28 (26–31) weeks. Higher Impact on Family scores (indicating worse effects on family functioning) were associated with taking ≥3 unpaid hours/week off from work, increased debt, financial worry, unsafe home environment and social isolation. Lower parent emotion scores (indicating greater impact on the parent) were also associated with social isolation and unpaid time off from work. Lower parent time limitations scores were associated with social isolation, unpaid time off from work, financial worry, and an unsafe home environment. In contrast, higher parent time limitations scores (indicating less impact) were associated with enrollment in early intervention and Medicaid. Interventions to reduce social isolation, lessen financial burden, improve home safety, and increase enrollment in early intervention and Medicaid all have the potential to lessen the impact of preterm birth on parents and families.

Scant research has adequately addressed the impact of chronic fatigue syndrome on patients' daily activities and quality of life. Enumerating specific problems related to quality of life in chronic fatigue syndrome patients can help us to better understand and manage this illness. This study addresses issues of functional status in persons with chronic fatigue syndrome and other fatiguing illnesses in a population based sample, which can be generalized to all persons with chronic fatigue. We conducted a random telephone survey in Wichita, Kansas to identify persons with chronic fatigue syndrome and other fatiguing illnesses. Respondents reporting severe fatigue of at least 1 month's duration and randomly selected non-fatigued respondents were asked to participate in a detailed telephone interview. Participants were asked about symptoms, medical and psychiatric illnesses, and about physical, social, and recreational functioning. Those meeting the 1994 chronic fatigue syndrome case definition, as determined on the basis of their telephone responses, were invited for clinical evaluation to confirm a diagnosis of chronic fatigue syndrome. For this analysis, we evaluated unemployment due to fatigue, number of hours per week spent on work, chores, and other activities (currently and prior to the onset of fatigue), and energy level. There was no difference between persons with chronic fatigue syndrome and persons with a chronic fatigue syndrome-like illness that could be explained by a medical or psychiatric condition for any of the outcomes we measured except for unemployment due to fatigue (15% vs. 40%, P < .01). Persons with chronic fatigue syndrome and other fatiguing illnesses had substantially less energy and spent less time on hobbies, schooling, or volunteer work than did non-fatigued controls (P < .01). Persons with chronic fatigue syndrome are as impaired as persons whose fatigue could be explained by a medical or psychiatric condition, and they have less energy than non-fatigued controls.

There is no validated measure of positive mental well-being that is suitable for Deaf people who use a signed language such as British Sign Language (BSL). This impedes inclusion of this population in a range of research designed to evaluate effectiveness of interventions. The study aims were: (i) to translate the original English version of SWEMWBS into BSL and to test the SWEMWBS BSL with the Deaf population in the UK who use BSL; (ii) to examine its psychometric properties; and (iii) to establish the validity and reliability of the SWEMWBS BSL. The SWEMWBS was translated into BSL following a six stage translation procedure and in consultation with the originators. The draft version was piloted with Deaf BSL users (n = 96) who also completed the CORE-OM BSL well-being subscale and the EQ-5D VAS BSL. Reliability was explored using Cronbach’s alpha for internal consistency and ICC for test-retest reliability. Validity was explored by using Kendall’s tau correction for convergent validity and an exploratory factor analysis for construct validity. The internal consistency for the reliability of the SWEMWBS BSL was found to be good and the test-retest one week apart showed an acceptable reliability. There was good convergent validity of the SWEMWBS BSL with the well-being subscale of the CORE-OM BSL and the EQ-5D VAS BSL. The SWEMWBS BSL can be used with a Deaf population of BSL users. This is the first validated version of a BSL instrument that focuses solely on positively phrased questions for measuring mental well-being.

Homelessness constitutes a traumatic period that adversely impacts health and quality of life outcomes. The potential mitigating effects of resilience on quality of life levels in people experiencing homelessness are underresearched. This study assesses the longitudinal associations between resilience and quality of life scores among adults experiencing homelessness and mental illness. This study is a secondary analysis of longitudinal data collected over 6 years from participants (N = 575) of the At Home/Chez Soi study on Housing First, Toronto site. Repeatedly measured resilience scores are the primary exposure and repeatedly measured global quality of life scores and mental health-specific quality of life scores are the primary outcomes. Mixed effect models were used to assess the association between the exposures and the outcomes. The majority of the participants were men (69.2%) and were on average 40.4 (± 11.8) years old at baseline. The average resilience score ranged between 5.00 to 5.62 over 8 data collection points across the 6-year follow-up period. After adjusting for gender, age, ethno-racial background, Housing First intervention, physical and mental comorbidities, and lifetime homelessness, higher resilience scores were positively associated with higher Global quality of life (Adjusted-coefficient: 0.23, 95% CI 0.19–0.27) and mental health-related quality of life values (Adjusted-coefficient: 4.15, 95% CI 3.35–4.95). In homeless adults with mental illness, higher resilience levels were positively associated with higher global and mental health related quality of life values. Further interventions and services aimed to enhance resilience mechanisms and strategies are warranted to enhance better mental health and quality of life outcomes of this population group. At Home/Chez Soi trial was registered with ISRCTN, ISRCTN42520374. Registered 18 September 2009, http://www.isrctn.com/ISRCTN42520374.

The Trunk Impairment Scale (TIS) has been translated into Chinese, but the psychometric properties of the Chinese version of the TIS (TIS-C) have not yet been established. We aimed to examine the reliability and validity of the TIS-C for assessing sitting balance among Chinese people with a stroke. A descriptive, cross-sectional design was used. We recruited a convenience sample of 170 subacute stroke patients aged 18 years or over from the neurology departments of four traditional Chinese medicine hospitals in China. Patients completed the TIS-C, the Berg Balance Scale and the Modified Barthel Index. The psychometric properties of the TIS-C were examined to establish test–retest reliability, internal consistency, equivalence, and content, criterion, and construct validity. Intraclass correlation coefficients for inter-rater and intra-rater reliability ranged from 0.75 to 0.89 and from 0.90 to 0.97, respectively. The TIS-C Cronbach α was 0.86. The strong correlation between the total score of the TIS-C and the Berg Balance Scale (rs = 0.81, p < 0.001) or Modified Barthel Index (rs = 0.84, p < 0.001) suggested good concurrent and convergent validity, respectively. Known-group validity was supported by the significant difference (p < 0.001) in TIS-C scores between participants with mild and moderate stroke. The TIS-C is a valid and reliable tool for assessing static and dynamic sitting balance as well as coordination of trunk movement among stroke survivors with mild and moderate stroke.

In 1996, the Centers for Medicare & Medicaid Services (CMS) initiated the development of the Medicare Health Outcomes Survey (HOS). It is the first national survey to measure the quality of life and functional health status of Medicare beneficiaries enrolled in managed care. The program seeks to gather valid and reliable health status data in Medicare managed care for use in quality improvement activities, public reporting, plan accountability and improving health outcomes based on competition. The context that led to the development of the HOS was formed by the convergence of the following factors: 1) a recognized need to monitor the performance of managed care plans, 2) technical expertise and advancement in the areas of quality measurement and health outcomes assessment, 3) the existence of a tested functional health status assessment tool (SF-36®)1, which was valid for an elderly population, 4) CMS leadership, and 5) political interest in quality improvement. Since 1998, there have been six baseline surveys and four follow up surveys. CMS, working with its partners, performs the following tasks as part of the HOS program: 1) Supports the technical/scientific development of the HOS measure, 2) Certifies survey vendors, 3) Collects Health Plan Employer Data and Information Set(HEDIS®)2 HOS data, 4) Cleans, scores, and disseminates annual rounds of HOS data, public use files and reports to CMS, Quality Improvement Organizations (QIOs), Medicare+Choice Organizations (M+COs), and other stakeholders, 5) Trains M+COs and QIOs in the use of functional status measures and best practices for improving care, 6) Provides technical assistance to CMS, QIOs, M+COs and other data users, and 7) Conducts analyses using HOS data to support CMS and HHS priorities. CMS has recently sponsored an evaluation of the HOS program, which will provide the information necessary to enhance the future administration of the program. Information collected to date reveals that the HOS program is a valuable tool that provides a rich set of data that is useful for quality monitoring and improvement efforts. To enhance the future of the HOS program, many stakeholders recommend the implementation of incentives to encourage the use of the data, while others identify the need to monitor the health status of plan disenrollees. Overall, the HOS program represents an important vehicle for collecting outcomes data from Medicare beneficiaries. The new Medicare Prescription Drug, Improvement, and Modernization Act (2003) mandates the collection and use of data for quality, outcomes measurement, program administration, and facilitating consumer choice. Consequently, it is important that the HOS program effectively meet this mandate.

Cardiovascular diseases (CVDs) have been the global health problems that cause a substantial burden for the patients and the society. Assessing the Quality of Life (QOL) of CVD patients is critical in the effectiveness evaluation of CVD treatments as well as in determining potential areas for enhancing health outcomes. Through the adoption of a combination of bibliometric approach and content analysis, publications trend and the common topics regarding interventions to improve QOL of CVD patients were searched and characterized to inform priority setting and policy development. Bibliographic data of publications published from 1990 to 2018 on interventions to improve QOL of CVD patients were retrieved from Web of Science. Network graphs illustrating the terms co-occurrence clusters were created by VOSviewer software. Latent Dirichlet Allocation approach was adopted to classify papers into major research topics. A total of 6457 papers was analyzed. We found a substantial increase in the number of publications, citations, and the number of download times of papers in the last 5 years. There has been a rise in the number of papers related to intervention to increase quality of life among patients with CVD during 1990–2018. Conventional therapies (surgery and medication), and psychological, behavioral interventions were common research topics. Meanwhile, the number of papers evaluating economic effectiveness has not been as high as that of other topics. The research areas among the scientific studies emphasized the importance of interdisciplinary and inter-sectoral approaches in both evaluation and intervention. Future research should be a focus on economic evaluation of intervention as well as interventions to reduce mental issues among people with CVD.

To test the psychometric properties of a traditional Chinese version of the Resilience Scale for Children (RS-10) and examine its factorial structure via a confirmatory factor analysis (CFA). One hundred and eighty-six Hong Kong Chinese children with cancer were recruited in the paediatric oncology units of two public acute-care hospitals in Hong Kong to participate in this cross-sectional study. The psychometric properties of the traditional Chinese version of the RS-10 were assessed, namely its content equivalence, convergent and discriminant validity, construct validity, internal consistency and test–retest reliability. The newly translated traditional Chinese version of the RS-10 demonstrated adequate internal consistency (Cronbach’s α = .83, McDonald’s Ω = .80), excellent test–retest reliability (.89), good content equivalence (CVI = 96%) and appropriate convergent (r =  − .52, P = .01) and discriminant validity (r = .61, P = .01). The CFA results demonstrated that there was a good fit between the factor structure of the Chinese version of the RS-10 and the observed data (χ2/df = 2.34, TLI = .951, RMSEA = .053, CFI = .962, GFI = .948, SRMR = .052), thereby confirming the construct validity of this instrument. The traditional Chinese version of the RS-10 was found to be a reliable and valid tool for assessing the resilience of Hong Kong Chinese children with cancer. The newly developed traditional Chinese version of the RS-10 is an appropriate clinical research tool for evaluating the effectiveness of nursing interventions in enhancing the resilience of and promoting mental well-being in children with cancer. Trial registration NCT03544190.

The use of warfarin in patients with non-valvular atrial fibrillation (NVAF) can be challenging. In this study, we evaluate the time in therapeutic range (TTR), health-related quality of life (HRQoL) and treatment satisfaction of patients on long-term warfarin for NVAF. The HRQoL and treatment satisfaction were compared based on the TTR. A cross-sectional study was conducted among patients on warfarin for NVAF who attended the anticoagulant clinic of a tertiary cardiology referral center in Sarawak from 1st June 2018 to 31st May 2019. Patients’ TTR was calculated by using Rosendaal technique, while their HRQoL and treatment satisfaction were assessed by using Short Form 12 Health Survey version 2 (SF12v2) and Duke Anticoagulant Satisfaction Scale (DASS), respectively. A total of 300 patients were included, with mean TTR score of 47.0 ± 17.3%. The physical component summary (PCS) and mental component summary (MCS) score of SF-12v2 were 47.0 ± 9.0 and 53.5 ± 9.6, respectively. The total score for DASS was 55.2 ± 21.3, while the score for limitations (L), hassles and burdens (H&B) and positive psychological impacts (PPI) were 18.0 ± 10.0, 15.6 ± 9.1 and 21.6 ± 5.9, respectively. Seventy-three (24.3%) patients had good TTR (≥ 60%), with mean of 70.2 ± 8.7%; while 227 (75.5%) patients with poor TTR had significantly lower mean of 39.5 ± 11.9% (p = 0.006). There was no significant difference in the score of PCS (p = 0.150), MCS (p = 0.919) and each domain of SF-12v2 (p = 0.184–0.684) between good and poor TTR, except for social functioning (p = 0.019). The total DASS score was also not significantly different between group (p = 0.779). Similar non-significant difference was also reported in all the DASS sub dimensions (p = 0.502–0.699). Majority of the patients on long-term warfarin for NVAF in the current study have poor TTR. Their HRQoL and treatment satisfaction are independent of their TTR. Achieving a good TTR do not compromise the HRQoL and treatment satisfaction. Therefore, appropriate measures should be taken to optimise INR control, failing which direct oral anticoagulant therapy should be considered.