Dataset Information

Self-Reported Health Experiences of Children Living with Congenital Heart Defects: Including Patient-Reported Outcomes in a National Cohort Study.

ABSTRACT: BACKGROUND:Understanding children's views about living with congenital heart defects (CHDs) is fundamental to supporting their successful participation in daily life, school and peer relationships. As an adjunct to a health and quality of life outcomes questionnaire, we asked school-age children who survived infant heart procedures to describe their experiences of living with CHDs. METHODS:In a UK-wide cohort study, children aged 10 to 14 years with CHDs self-completed postal questionnaires that included an open question about having a 'heart problem'. We compared the characteristics of children with more and less severe cardiac diagnoses and, through collaborative inductive content analysis, investigated the subjective experiences and coping strategies described by children in both clinical severity groups. RESULTS:Text and/or drawings were returned by 436 children (246 boys [56%], mean age 12.1 years [SD 1.0; range 10-14]); 313 had less severe (LS) and 123 more severe (MS) cardiac diagnoses. At the most recent hospital visit, a higher proportion of the MS group were underweight (more than two standard deviations below the mean for age) or cyanosed (underweight: MS 20.0%, LS 9.9%; cyanosed: MS 26.2%, LS 3.5%). Children in the MS group described concerns about social isolation and feeling 'different', whereas children with less severe diagnoses often characterised their CHD as 'not a big thing'. Some coping strategies were common to both severity groups, including managing health information to avoid social exclusion, however only children in the LS group considered their CHD 'in the past' or experienced a sense of survivorship. CONCLUSIONS:Children's reported experiences were not dependent on their cardiac diagnosis, although there were clear qualitative differences by clinical severity group. Children's concerns emphasised social participation and our findings imply a need to shift the clinical focus from monitoring cardiac function to optimising participation. We highlight the potential for informing and evaluating clinical practice and service provision through seeking patient-reported outcomes in paediatric care.

SUBMITTER: Knowles RL

PROVIDER: S-EPMC4972252 | biostudies-literature | 2016

REPOSITORIES: biostudies-literature

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Self-Reported Health Experiences of Children Living with Congenital Heart Defects: Including Patient-Reported Outcomes in a National Cohort Study.

Knowles Rachel Louise RL Tadic Valerija V Hogan Ailbhe A Bull Catherine C Rahi Jugnoo Sangeeta JS Dezateux Carol C

PloS one 20160803 8

<h4>Background</h4>Understanding children's views about living with congenital heart defects (CHDs) is fundamental to supporting their successful participation in daily life, school and peer relationships. As an adjunct to a health and quality of life outcomes questionnaire, we asked school-age children who survived infant heart procedures to describe their experiences of living with CHDs.<h4>Methods</h4>In a UK-wide cohort study, children aged 10 to 14 years with CHDs self-completed postal ques ...[more]

PMID: 27487183

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Project description:ImportanceMedicare's End-Stage Renal Disease Quality Incentive Program incorporates measures of perceived value into reimbursement calculations. In 2016, patient experience became a clinical measure in the Quality Incentive Program scoring system. Dialysis facility performance in patient experience measures has not been studied at the national level to date.ObjectiveTo examine associations among dialysis facility performance with patient experience measures and patient, facility, and geographic characteristics.DesignIn this cross-sectional analysis, patients from a national end-stage renal disease registry receiving in-center hemodialysis in the United States on December 31, 2014, were linked with dialysis facility scores on the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems (ICH-CAHPS) survey. Of 4977 US dialysis facilities, 2939 (59.1%) reported ICH-CAHPS scores from April 8, 2015, through January 11, 2016. Multivariable linear regression models with geographic random effects were used to examine associations of facility ICH-CAHPS scores with patient, dialysis facility, and geographic characteristics and to identify the amount of total between-facility variation in patient experience scores explained by these categories. Data were analyzed from September 15, 2017, through June 1, 2018.ExposuresDialysis facility, geographic characteristic, and 10% change in patient characteristics.Main outcomes and measuresDialysis facility ICH-CAHPS scores and the total between-facility variation explained by different categories of characteristics.ResultsOf the 2939 facilities included in the analysis, adjusted mean ICH-CAHPS scores were 2.6 percentage points (95% CI, 1.5-3.7) lower in for-profit facilities, 1.6 percentage points (95% CI, 0.9-2.2) lower in facilities owned by large dialysis organizations, and 2.3 percentage points (95% CI, 0.5-4.2) lower in free-standing facilities compared with their counterparts. More nurses per patient was associated with 0.2 percentage points (95% CI, 0.03-0.3) higher scores; a privately insured patient population was associated with 1.2 percentage points (95% CI, 0.2-2.2) higher scores. Facilities with higher proportions of black patients had 0.95 percentage points (95% CI, 0.78-1.12) lower scores; more Native American patients, 1.00 percentage point (95% CI, 0.39-1.60) lower facility scores. Geographic location and dialysis facility characteristics explained larger proportions of the overall between-facility variation in ICH-CAHPS scores than did patient characteristics.Conclusions and relevanceThis study suggests that for-profit operation, free-standing status, and large dialysis organization designation were associated with less favorable patient-reported experiences of care. Patient experience scores varied geographically, and black and Native American populations reported less favorable experiences. The study findings suggest that perceived quality of care delivered in these settings are of concern, and that there may be opportunities for improved implementation of patient experience surveys as is highlighted.

Dataset Information

Self-Reported Health Experiences of Children Living with Congenital Heart Defects: Including Patient-Reported Outcomes in a National Cohort Study.

Publications

Self-Reported Health Experiences of Children Living with Congenital Heart Defects: Including Patient-Reported Outcomes in a National Cohort Study.

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