Using Patient-Centered Care After a Prenatal Diagnosis of Trisomy 18 or Trisomy 13

Abstract

atient satisfaction with health care is an increasingly significant concern. In 2001, the Institute of Medicine introduced a comprehensive strategy to improve health care in the United States. A key aim of this proposal is patient-centered care (PCC), defined as "providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions." 1(p6) Based on a comprehensive analysis of patient focus group data, 4 core concepts (dignity and respect, information sharing, participation, and collaboration) have been established to define quality in health care delivery (Table ). 2 These concepts harmonize with the clinical ethical principles of beneficence, nonmaleficence, justice, and respect for autonomy. 3 Previous reports suggest dissatisfaction among patient families and growing debate among clinicians regarding care after trisomy 18 (T18) or trisomy 13 (T13) diagnosis. 4,5 Our objective was to use PCC concepts to develop a framework that more fully evaluates sources of dissatisfaction and debate regarding shared decision making and clinical care of infants with T18 and T13. We outline key recommendations for a balanced approach to joint decision making regarding care that has application in other areas of challenging patient treatment.

Experiences and outcomes following diagnosis of congenital foetal anomaly and medical termination of pregnancy: A phenomenological study

“…On many occasions, therefore, the problem is approached from a biologicist standpoint, focusing exclusively on the chromosomopathy, without contemplating having a child with disability or evaluating the option of adoption (Vargas Aldecoa, Martin Conty, Conty Serrano, & Fernandez Perez, ). To achieve satisfactory communication, there must be a patient‐centred approach, with a biopsychosocial understanding that recognises the need to consider not only the disease but also the personal experience (Haug, Goldstein, Cummins, Fayard, & Merritt, ). The main aim of the present study was to analyse the experience, described in their own words, of pregnant women given a diagnosis of chromosomopathy and/or foetal malformation, and who then legally terminated their pregnancy.…”

Prenatal and Postnatal Follow-up in Trisomies 13 and 18: A 20-Year Experience in a Tertiary Center

“…Cultural differences, familial, and religious beliefs are reported to be the main factors affecting attitudes toward invasive prenatal testing and pregnancy termination in fetal abnormalities. 13,14 In keeping with this consideration, we found that in 18.5% (10/54), karyotype analysis was not performed, even if there were multiple anomalies. All parents who accepted invasive testing opted for ToP after a positive karyotype result, except one with mosaic trisomy 13 and one with full trisomy 18, which ended in fetal demise.…”

Mixed method study of quality of life for children with trisomy 18 and 13 after cardiac surgery

“…Cardiac surgical offerings may be considered in the context of an interdisciplinary care team's shared exploration of the child's comorbidities and the family's understanding of overall prognosis, values, and decisional context. 37 Mixed methods research is recognised as transformative in capturing differing value commitments which can lead to dialogue across professional, personal, and ideological perspectives. This study adds to the recent dialogue by describing parental hopes and goals in pursuing cardiac surgical interventions.…”