What information should be shared with the mother of a 13-year-old patient with Sickle Cell Disease (SCD) experiencing a vaso-occlusive crisis, who has a history of substance use, regarding her condition?

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Last updated: April 8, 2025View editorial policy

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From the Guidelines

As the doctor caring for this 13-year-old with sickle cell pain crisis, I would share information about the patient's medical condition, treatment plan, and prognosis with the mother, while maintaining confidentiality regarding the patient's drug use, as per the principles of adolescent care 1. When discussing the patient's condition with the mother, I would focus on the management of sickle cell pain crisis, including the use of oral fluids, rest, heat, oral analgesics, and comfort measures, as well as the potential need for parenteral opioids, such as morphine, for severe pain 1. I would also emphasize the importance of adequate hydration, monitoring of oxygenation and cardiorespiratory status, and close observation for the development of other complications, particularly acute chest syndrome 1. Regarding the patient's drug use, I would encourage the patient to share this information with her mother, possibly with my support during a facilitated conversation, while respecting the adolescent's developing autonomy and recognizing parental rights to information necessary for making healthcare decisions for their minor child. It is essential to balance the need for confidentiality with the need to ensure the patient's safety and well-being, and to involve the mother in the patient's care while respecting the patient's autonomy, as outlined in the principles of health supervision for children with sickle cell disease 1. Key aspects of the patient's care that I would discuss with the mother include:

  • The patient's current medication list and reason for current medications
  • Methods of transferring to new providers
  • Issues related to activity, including participation in athletics, avoidance of temperature extremes, and maintenance of hydration
  • The importance of avoiding alcohol, tobacco, vaping, and street drugs, which may precipitate or exacerbate complications of SCD 1.

From the Research

Information to be Shared with the Mother

When discussing the condition of her 13-year-old daughter who is suffering from Sickle Cell Pain Crisis, the following points should be considered:

  • The patient's admission to the hospital is due to a vaso-occlusive crisis, which is a common cause of acute pain in individuals with Sickle Cell Disease (SCD) 2.
  • The use of opioids, such as morphine, is a common treatment for severe pain in SCD, but it is essential to be aware of the potential risks and side effects, including the possibility of exacerbating existing organ damage 3.
  • The patient's history of drug use should be taken into consideration when developing a treatment plan, as it may impact the effectiveness and safety of certain medications.
  • Research has shown that high systemic exposure to morphine and its active metabolite morphine-6-glucuronide may increase the risk of acute chest syndrome in patients with SCD 4.
  • Alternative pain management options, such as hydromorphone, may be considered, as they may provide improved pain control and recovery from acute painful episodes in patients with SCD 5.
  • It is crucial to follow guidelines for acute pain crisis management in SCD, which include the use of strong opioid analgesic drugs, combined with additional supportive care measures, to improve outcomes 6.

Treatment Plan

The treatment plan for the patient should be individualized and take into account her specific needs and medical history. The plan may include:

  • Pain management with opioids or alternative medications, such as hydromorphone
  • Close monitoring of the patient's condition, including her pain levels, vital signs, and potential side effects of medications
  • Additional supportive care measures, such as hydration, oxygen therapy, and psychological support
  • Education and counseling for the patient and her family on the management of SCD and the potential risks and benefits of different treatment options.

References

Guideline

Guideline Directed Topic Overview

Dr.Oracle Medical Advisory Board & Editors, 2025

Research

Sickle cell disease pain management in adolescents: a literature review.

Pain management nursing : official journal of the American Society of Pain Management Nurses, 2015

Professional Medical Disclaimer

This information is intended for healthcare professionals. Any medical decision-making should rely on clinical judgment and independently verified information. The content provided herein does not replace professional discretion and should be considered supplementary to established clinical guidelines. Healthcare providers should verify all information against primary literature and current practice standards before application in patient care. Dr.Oracle assumes no liability for clinical decisions based on this content.

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