Background: Sickle cell disease (SCD), a genetic blood disorder that affects red blood cells and oxygen delivery to body tissues, is characterized by haemolytic anaemia, pain episodes, fatigue, and end-organ damage with acute and chronic dimensions. Caring for patients with SCD imposes a high burden on informal caregivers. This study aims to capture the impact on health-related quality of life (HRQoL) and economic burden of caregiving for patients with SCD.
Methods: Validated instruments of HRQoL (EQ-5D-5L, Carer Quality of Life-7 dimensions [CarerQol-7D]) and productivity (Work Productivity and Activity Impairment Questionnaire: Specific Health Problem [WPAI: SHP]) were administered via a cross-sectional online survey to caregivers in the United Kingdom (UK) and France. Demographics, HRQoL, and economic burden data were analyzed using descriptive statistics. Economic burden was determined using country-specific minimum and average wage values. Subgroup analysis examined caregivers with and without SCD.
Results: Sixty-nine caregivers were recruited (UK, 43; France, 26), 83% were female, and 22% had SCD themselves. The mean (SD) caregiver EQ-5D-5L score was 0.66 (0.28) (UK, 0.62; France, 0.73), and the mean CarerQol-7D score was 80.69 (24.40) (UK, 78.72 [25.79]; France, 83.97 [22.01]). Mental health problems were reported in 72% and 70% of caregivers measured using the EQ-5D-5L and CarerQol-7D, respectively. Financial problems were reported by 68% of caregivers, with mean annual minimum wage productivity losses of £4209 and €3485, increasing to £5391 and €9319 for average wages. Sensitivity analysis determined additional HRQoL decrements for caregivers with and without, SCD.
Conclusion: Caring for patients with SCD impacts the HRQoL and economic burden of caregivers. Further research to support the complex needs of SCD caregivers is required.
Background: Previous research has suggested that alternative (respiratory) care providers (ACP) may provide affordable, accessible care for sleep-disordered breathing (SDB) that decreases wait-times and improves clinical outcomes. The objective of this study was to compare ACP-led and sleep physician-led care for SDB on patient reported outcome and experiences, with a focus on general and health-related quality of life, sleepiness, and patient satisfaction.
Methods: We conducted a secondary analysis of a randomized trial in which participants with severe SDB were assigned to either ACP-led or physician-led management. We created longitudinal linear mixed models to assess the impacts of treatment arm and timepoint on total and domain-level scores of multiple patient-reported outcome measures and patient-reported experience measures.
Results: Patients in both treatment arms (ACP-led n = 81; sleep-physician = 75) reported improved outcomes on the Sleep Apnea Quality of Life Index, Health Utilities Index, and Epworth Sleepiness Scale. Patients in each group had similar and clinically meaningful improvements on domains assessing cognition, emotion, and social functioning. The linear mixed models suggested no significant difference between treatment arms on the patient-reported outcomes. However, scores significantly improved over time.
Conclusions: Management of SDB using ACPs was comparable to physician-led care, as measured bypatient-reported outcome and experience measures. While loss to follow-up limits our findings, these results provide some support for the use of this novel health service delivery model to improve access to high quality SDB care.
Clinical trial registration: This is analysis of data from the study registered Clinicaltrials.gov (NCT02191085).
Background: Assessment of QoL has become an essential component in the holistic care of patients with acne. The Cardiff Acne Disability Index (CADI) is used globally to assess quality of life (QoL) in patients with acne. This study was done to validate CADI in Tamil, as 90 million of the global population are native speakers and Tamil is an official language of several countries.
Methods: CADI was translated and validated into Tamil according to published guidelines. The Tamil versions of both CADI and Dermatology Life Quality Index (DLQI), was administered to 150 Sri Lankan young adults with acne. The clinical severity was assessed using the Global Acne Grading System (GAGS). Discriminant validity was tested by comparing the results of CADI with those of GAGS and DLQI, using reliability, validity, Cronbach's alpha, and Spearman's correlation coefficient measurements. Construct validity was assessed by factor analysis.
Results: 70% were female, and the mean age was 25.1 (SD, 5.2). The majority (91.3%) had acne of mild to moderate severity when measured by GAGS. CADI-Tamil showed high internal consistency and reliability (Cronbach's alpha coefficient = 0.83). The CADI total score showed a strong correlation (0.86) with that of DLQI. The correlation between CADI and GAGS was low, whereas CADI had a high and significant correlations with the DLQI. The construct validity explained 61% of the variability.
Conclusions: The CADI-Tamil is a reliable and valid tool for assessing the QoL of Tamil speaking patients with acne. This tool will help clinicians understand the patient's perspective on acne.
Background: Although quality of life (QOL) is an outcome of postoperative cardiac rehabilitation (CR), its course and related factors from postoperative hospitalization to the post-discharge period have not been adequately investigated. Additionally, the EuroQol-5Dimension-5Level (EQ-5D-5L) index score has not been characterized over the same period. We aimed to characterize QOL changes assessed by the EQ-5D-5L, over the period from hospitalization to 1 year post-discharge, in patients post-cardiac and thoracic aortic surgery, and investigate the factors associated with these temporal changes.
Methodology: This prospective, single-center study included 117 patients who underwent open cardiovascular surgery (median age, 72 years; men, 69%). Patients were assessed for QOL status when transferred to the general ward; at discharge; and at 6 and 12 months after discharge, using the EQ-5D-5L index score and a generalized linear mixed model with random intercepts. Patients were classified into two groups based on score changes post-discharge. Logistic regression analysis evaluated factors associated with QOL decrease post-discharge.
Results: The EQ-5D-5L index score significantly increased over time, except between 6 and 12 months post-discharge; "Common activities" was the most common dimension showing score improvement. In 25 patients (21%), the EQ-5D-5L index scores were lower after discharge compared to their scores at discharge. In the logistic regression analysis, Barthel Index pre-admission, preoperative hemoglobin level, and Mini-Mental State Examination-Japanese scores pre-discharge were significantly associated with QOL decline after adjusting for the European System for Cardiac Operative Risk Evaluation II score.
Conclusions: Most patients post-cardiac or thoracic aortic surgery experienced improved QOL from postoperative hospital stay to 1 year post-discharge. However, in patients with pre-operative basic activities of daily living, hemoglobin and post-operative cognitive decline may require ongoing comprehensive CR because of reduced QOL. Given the potential selection bias introduced by the relatively small sample size in this study, future research involving larger populations is necessary.
Background: Coronary artery disease (CAD) confers increased risks of premature mortality, non-fatal morbidity, and significant impairment in functional status and health-related quality of life. Routine administration of electronic patient-reported outcome measures (PROMs) and its real time delivery to care providers is known to have the potential to inform routine cardiac care and to improve quality of care and patient outcomes. This study describes a user-centered development and evaluation of the Alberta Provincial Project for Outcomes Assessment (APPROACH) electronic Patient Reported Outcomes Measurement (e-PROM) system. This e-PROM system is an electronic system for the administration of PROMs to patients with CAD and the delivery of the summarized information to their care providers to facilitate patient-physician communication and shared decision-making. This electronic platform was designed to be accessible via web-based and hand-held devices. Heuristic and user acceptance evaluation were conducted with patients and attending care providers.
Results: The APPROACH e-PROM system was co-developed with patients and care providers, research investigators, informaticians and information technology experts. Five PROMs were selected for inclusion in the online platform after consultations with patient partners, care providers, and PROMs experts: the Seattle Angina Questionnaire, Patient Health Questionnaire, EuroQOL, and Medical Outcomes Study Social Support Survey, and Self-Care of Coronary Heart Disease Inventory. The heuristic evaluation was completed by four design experts who examined the usability of the prototype interfaces. User acceptance testing was completed with 13 patients and 10 cardiologists who evaluated prototype user interfaces of the e-PROM system.
Conclusion: Both patients and physicians found the APPROACH e-PROM system to be easy to use, understandable, and acceptable. The APPROACH e-PROM system provides a user-informed electronic platform designed to incorporate PROMs into the delivery of individualized cardiac care for persons with CAD.
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