Hydroxyurea therapy for children with sickle cell disease: describing how caregivers make this decision

Abstract

BackgroundHydroxyurea (HU) is underutilized in children with sickle cell disease (SCD) because caregivers frequently decline HU when it is offered. This study explores what impacts this decision.ResultsCaregivers of children with clinically severe SCD whose children were offered HU previously were interviewed. We used a qualitative analytical approach to analyze their telephone interview transcripts. Caregivers who chose HU (n = 9) reported their children had severe SCD, sought detailed information about HU, and accepted HU as a preventative therapy. In contrast, caregivers who did not choose HU (n = 10) did not perceive their children as having severe SCD and did not question their child’s provider about HU.ConclusionsThis study identifies specific areas that providers should address to when they discuss HU with families so that they can make informed decisions. Our study also uncovered factors that are important to consider when designing future interventions to improve hydroxyurea acceptance and when developing decision-aid tools to assist caregivers of children with SCD who are considering disease modifying therapies.

Barriers to hydroxyurea adherence and health‐related quality of life in adolescents and young adults with sickle cell disease

“…Despite growing evidence to support the safety and efficacy of hydroxyurea in SCD, it is underutilized and adherence remains suboptimal. 4,[9][10][11][12]14,15 Consistent with previous reports, 9,10,14,35 our results showed that a third of our AYA with SCD had negative beliefs and concerns about hydroxyurea. In addition, we found that patients with negative beliefs related to hydroxyurea had laboratory data suggestive of lower adherence rates.…”

Cuidado à família da criança com doença crônica

“…Regarding the object of the studies, 11 (28.20%) articles focused on the family 12,14,19,21,31,39, , three (7,69%) on the mothers 13,40-1 , one (2.57%) on the children, parents and health professionals 15 , seven (17.95%) studies dealt with children 16,20,22,25,28,34,48 , four (10,26 %) with children and their families 17,35 , six (15,38%) studies focused on parents (mother and father) 18,24,27,38,[49][50] , two (5,12%) studies on parents and health professionals 23,26 , one (2.57%) on the child and the parents 29 , one (2.57%) on the health professionals 30 , two (5.12%) on the nursing professionals, 45,47 and, finally, one (2.57%) focused on the nursing professionals and the family. 46 A synthesis of the results found in the articles gave origin to two thematic categories: Facing the diagnosis of a chronic disease, change of habits and family reorganization; Care routines of families with children with chronic conditions.…”

“…Thus, there is an obvious financial impact on these families. [17][18][19][20][21][22][23][24][25][26][27][28][29][30][31][32] The routine of the families, especially of the mothers who play the role of main caregivers, is affected. They have to reorganize things in the face of new responsibilities and constant demands.…”

“…The plans and careers are disrupted, and even the ability to find the material means to survive. 18 According to a study on children with cerebral palsy, the families find it difficult to obtain social support because although the technological advances in the health area saved the life of their child, the society is not prepared to receive them, or to aid in their rehabilitation. Thus, it is not easy to obtain the resources that the children need, and the families have to seek treatment and follow-up through other ways.…”

“…Parents reported that they found beneficial to receive more information about their children's chronic illness, stressing the importance of education programs to promote more benefits to understanding and caring for children. 18 It is necessary for health professionals to get involved in the care of children by the use of communication and other instruments to better meet the needs of the families, taking as an example the nursing diagnosis that facilitates, enables and favors a more adequate assistance. In this context, nurses need cognitive skills, experience and scientific knowledge to interpret patient data, and to implement care plans and actions to maintain the quality of the care offered.…”