What is the self-care at each stage of the patient's life with SCD

Self-care is an important aspect in the treatment of any disease and in maintaining the patient's quality of life. In Sickle Cell Disease, usually detected in the first months of a child's life - and that accompanies them until adulthood, it is no different. However, self-care strategies must be age-appropriate. Self-care may also differ according to the life conditions of each patient.

Children, adolescents, pregnant women and adults: four phases, four contexts, four ways of dealing with SCD.¹

In the case of the child, early diagnosis occurs with the heel prick test, still in the maternity ward. Multidisciplinary care should be initiated at this stage, since the baby is fully dependent on the attention and care of parents, nurses and doctors. As the child and his/her family grow, they should be made aware of the severity of the disease and instructed on self-care.

Reception and guidance, without prejudice or stigma of any kind, are decisive in the way the family and the patient will live with the disease.

Children's self-care

The risk factors at this stage are the lack of knowledge about the disease and treatment alternatives, the discovery of pain and the way to live with it, the possibility of altered growth and development, and infections. The inclusion of the family and the child in a comprehensive health care program can reduce morbidity and mortality rates. Educational actions with the family and eventual caregivers are also important. Knowing which symptoms require medical attention, developing healthy habits, maintaining a vaccination program, keeping an eye on infections and their signs (fever, diarrhea, vomiting, prostration, etc.), in addition to adopting other preventive and prophylactic measures,² improve the level of knowledge about SCD, increase adherence to treatment and results in disease control.

Monitoring the child's growth, orienting them on the correct diet and hydration, establishing age-appropriate physical activities and exercises, avoiding overprotection and encouraging independence are also part of a good strategy for coping with the disease at this stage.

Self-care in teenagers

Given the characteristics of agitation, rebellion and identity crises typical of age, the relationship of adolescents with parents and caregivers can be impaired at this stage. One of the challenges is to maintain young people's adherence to the therapeutic program and self-care that have been developed in childhood.

Skin problems, impaired physical mobility and growth and sexual development delays caused by sickle cell disease often expose young people to prejudice and social segregation, especially at school, impairing their self-esteem. Therefore, at this stage, health professionals, educators and the family itself must adopt positions open to dialogue, seeking to understand the feelings and anxiety regarding the disease.

These strategies will allow for greater participation and responsibility of young people in terms of self-care and maintenance of recommended treatments and therapies, with positive effects also on their social integration.

Self-care in pregnant women

Every woman has the right to be a mother, if that is her choice. However, Sickle Cell Disease has genetic and hereditary characteristics that, although not preventing pregnancy, require extra care with the pregnant woman and the fetus.

Pregnant women with SCD are unaware of the risks they are exposed to and neither they nor their partners are prepared to face the limitations of such a pregnancy. It is important that the responsible health professional knows the difficulties of a sickle cell pregnancy, as well as the best strategy for the delivery – natural childbirth is recommended – and subsequent breastfeeding, in order to adequately educate the pregnant woman and her family.

Careful prenatal care should be carried out by an obstetrician, a hematologist and a hemotherapist, in order to promote the reduction of complications (urinary and respiratory infections are common) that could harm or even make pregnancy unfeasible.

self-care in adults

An adult who has been properly oriented and encouraged to self-care in childhood and adolescence, in the prevention of clinical complications and improvement in their quality of life, tends to be an adult with healthy habits and to show good adherence to treatments. The great challenge at this stage, therefore, is to take preventive measures and expand knowledge about the disease and strategies to face it, identifying symptoms early and reducing clinical complications that may interfere with their rhythm of life.

Recurrent pain is usually the main cause of seeking emergency services and subsequent hospitalizations. Therefore, self-care in pain prevention is essential in adulthood, since in addition to sacrificing the person, crises compromise their professional, domestic and social activities.

The importance of hydroxyurea in the treatment of FD, with precise dosage for each stage of the patient's life.

Treatment with hydroxyurea is the best strategy to fight sickle cell disease. The main challenge for adhering to and maintaining a treatment program has been the difficulty in dosing and administering the medication, which varies from person to person and at each stage of the patient's life.

To solve this problem, it was approved by Anvisa and the first treatment indicated in the package insert is available in Brazil for adults and children from 2 years of age.

Successfully used in Europe and the USA, the drug is presented in 100 mg and 1000 mg capsules, which can be fractioned and the dose adjusted precisely, enabling greater adherence to treatment and error-free therapy.

 

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References:

1. Scielo Brasil – Brazilian Journal of Hematology and Hemotherapy. Self-care in sickle cell disease. Available in: https://www.scielo.br/j/rbhh/a/kmqVY4SmkC6cryFkdfsSMZc/?lang=pt Accessed in April 2022.

NCBI – National Center for Biotechnology Information – US National Library of Medicine. Evaluation and Treatment of Sickle Cell Pain in the Emergency Department: Paths to a Better Future. Available in: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3076949/ Accessed in April 2022.