Quality of life in pediatric heart transplant recipients: A comparison with children with and without heart disease

Uzark, Karen; Griffin, Lisa; Rodriguez, R.; Zamberlan, M.; Murphy, Paula; Nasman, Colleen; Dupuis, Joanne; Rodgers, Sherrie; Limbers, Christine A.; Varni, James W.

doi:10.1016/j.healun.2012.01.867

Cited by 56 publications

(76 citation statements)

References 26 publications

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“…[45][46][47] Children who receive heart transplants do not uniformly report significant improvements in HRQOL, with those transplanted at older ages reporting lowest HRQOL. [48][49][50] For children, the daily medications and constant surveillance after organ transplantation become particularly challenging as they develop increasing needs for independence and control. However, data suggest that adult survivors of pediatric HT report a good HRQOL.…”

Section: Adverse Eventsmentioning

confidence: 99%

Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association

Braun¹,

Grady²,

Kutner³

et al. 2016

Circulation

199

143

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AbstrAct:The mission of the American Heart Association/American Stroke Association includes increasing access to high-quality, evidencebased care that improves patient outcomes such as health-related quality of life and is consistent with the patients' values, preferences, and goals. Awareness of and access to palliative care interventions align with the American Heart Association/American Stroke Association mission. The purposes of this policy statement are to provide background on the importance of palliative care as it pertains to patients with advanced cardiovascular disease and stroke and their families and to make recommendations for policy decisions. Palliative care, defined as patient-and family-centered care that optimizes health-related quality of life by anticipating, preventing, and treating suffering, should be integrated into the care of all patients with advanced cardiovascular disease and stroke early in the disease trajectory. Palliative care focuses on communication, shared decision making about treatment options, advance care planning, and attention to physical, emotional, spiritual, and psychological distress with inclusion of the patient's family and care system. Our policy recommendations address the following: reimbursement for comprehensive delivery of palliative care services for patients with advanced cardiovascular disease and stroke; strong payerprovider relationships that involve data sharing to identify patients in need of palliative care, identification of better care and payment models, and establishment of quality standards and outcome measurements; healthcare system policies for the provision of comprehensive palliative care services during hospitalization, including goals of care, treatment decisions, needs of family caregivers, and transition to other care settings; and health professional education in palliative care as part of licensure requirements.

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Section: Adverse Eventsmentioning

confidence: 99%

Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association

Braun¹,

Grady²,

Kutner³

et al. 2016

Circulation

199

143

View full text Add to dashboard Cite

show abstract

“…In 2010 and 2011, 35 SCT patients with a mean age of 10.5 (range, [3][4][5][6][7][8][9][10][11][12][13][14][15][16][17][18][19][20][21][22] years were included in the process of testing the new instrument. These patients and their parents were not identical to those who participated in the developmental process (see above).…”

Section: Testing the New Instrumentmentioning

confidence: 99%

Health-related quality of life in pediatric patients after allogeneic SCT: development of the PedsQL Stem Cell Transplant module and results of a pilot study

Lawitschka

Guclu

Varni

et al. 2014

Bone Marrow Transplant

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With increased survival after pediatric allogeneic hematopoietic SCT health-related quality of life (HRQL) has emerged as an essential health outcome. The impact of transplant and chronic GVHD (cGVHD)-associated morbidity remains a major obstacle. In 2005, the National Institutes of Health (NIH) Consensus Conference on Criteria for Clinical Trials in cGVHD recommended HRQL tools as an independent measure of the impact of disease burden. The NIH recommendations did not provide a cGVHD-specific tool for HRQOL measures in children. This report focuses on the development of an SCT-specific instrument to assess HRQL in children and adolescents. For the assessment of generic HRQL we chose the PedsQL (Pediatric Quality of Life Inventory) Generic Cores Scales, which have been used in a large number of healthy, acutely ill and chronically ill children and adolescents. To capture SCT-and, specifically, cGVHD-related problems, we developed the PedsQL Stem Cell Transplant module by reviewing the literature, taking over some items/scales of other PedsQL modules, interviewing patients, parents and members of the health-care team, and applying the PedsQL measurement methods. The final PedsQL Stem Cell Transplant module consists of the HRQL domains: pain and hurt, fatigue/sleeping problems/weakness, nausea, worry/anxiety about disease/treatment, nutritional problems, neurocognitive problems, communication about disease/treatment, loneliness, physical functioning and additional somatic complaints (pruritus, skin inflammation, oral problems, eyes or breathing) including patients' and parents' assessment. It was tested in 35 pediatric patients, who were referred to our SCT Outpatient Clinic about 100 days post SCT. Both the generic PedsQL and the SCT-specific scales showed high internal consistency, with Cronbach alpha levels of ⩾ 0.70 in almost all scales. Most problems were detected within the HRQL domains of physical functioning and pain. The summary scores of the generic PedsQL and the PedsQL Stem Cell Transplant module showed high correlations (r = 0.89 in patients' and r = 0.81 in parents' assessments). Moreover, both tools discriminated between patients with and without cGVHD. The PedsQL Stem Cell Transplant module is practical for use and suitable across a broad age range (2-18 years) both in patients with and without cGVHD. However, it is still a pilot instrument and needs further development and testing in a larger patient population.

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“…Mothers tried strategies to better adapt to the needs of their children so that they can address new financial problems. Therefore, not only does the mothers' role deserve special mention, but the family's as well, which results in a support network, both emotional and financial (16)(17) .…”

Section: Discussionmentioning

confidence: 99%

Mothers' perceptions of care practices for children who underwent heart transplantation

Feitoza

Rebouças

Silva

et al. 2016

Rev. esc. enferm. USP

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Objective:To learn mothers' perceptions of the main care practices that are to be administered after their children's heart transplantation, as well as the main difficulties they experience. Method: A descriptive qualitative study conducted in March and April 2014, using the focus group technique for data gathering. Participants were 12 mothers who were monitoring their children in a hospital that is a reference for treating cardiopulmonary diseases. Speeches were recorded, transcribed, and organized around the care practices that the mothers performed after the children's heart transplantations, the mothers' main difficulties, their perceptions of their children's quality of life, and the use of educational materials to disseminate post-transplantation care practices. For data analysis, we used the content analysis technique. Results: The following were clarified: the schedule of immunosuppressive medication; food, environmental, and bodily and oral hygiene; the use of surgical masks; and keeping the children away from crowds. Conclusion:The study contributed to the situational diagnosis of the care administered by the mothers of transplanted children.

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Quality of life in pediatric heart transplant recipients: A comparison with children with and without heart disease

Cited by 56 publications

References 26 publications

Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association

Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association

Health-related quality of life in pediatric patients after allogeneic SCT: development of the PedsQL Stem Cell Transplant module and results of a pilot study

Mothers' perceptions of care practices for children who underwent heart transplantation

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