Advanced Practice

CAR T-cell therapy for children: Meeting patient and family needs

Chimeric antigen receptor T-cell therapy is a promising immunotherapy for children with refractory or relapsed acute lymphoblastic leukemia who otherwise have limited treatment options.

Colleen Callahan, MSN, RN, CRNP
Colleen Callahan
Diane Baniewicz, MSN, RN, CRNP
Diane Baniewicz

For many of these patients — especially those who have experienced multiple relapses — and their families, this has been a long, complicated journey. Many have experienced years of remissions and relapses and, as a result, often come to CAR T-cell therapy medically well-educated.

However, regardless of their prior experience, these patients and families require education regarding CAR T-cell therapy, because it is new and different from anything they have encountered in the past. APPs are an essential component of the multidisciplinary team that provides such education at various timepoints of the treatment trajectory. As part of our unique role in our nurse practitioner-run clinic, APPs are able to build rapport, provide anticipatory guidance and support in answering questions, act as a point person for coordination of care, and help to manage side effects of therapy.

A ‘continuous, ongoing process’

To receive CAR T-cell therapy, patients and families must travel to the treating institution for T-cell collection and consent. They must return once CAR T cells are ready to be infused and stay locally for 4 to 6 weeks.

During their stay, patients receive lymphodepleting chemotherapy and CAR T-cell infusion, have frequent outpatient follow-up visits and monitoring, and are admitted if febrile. Four weeks after infusion, patients undergo an evaluation of response. The results are reviewed with the patients and families a few days later. After patients go home, they return to the CAR T-cell institution at specific timepoints for required follow-up.

There are multiple opportunities for patient and family education along this CAR T-cell therapy timeline; this education is a continuous, ongoing process. Early discussion and education set expectations and can ease anxiety about the unknown.

Opportunities for education include during the referral process, T-cell collection and CAR T-cell therapy consent visit, lymphodepleting chemotherapy week, the infusion visit, follow-up visits immediately after infusion, and throughout long-term follow-up.

Anticipatory guidance and education include discussion of the therapy and how CAR T cells work, the treatment process, and both immediate and long-term side effects. Education requires an individualized approach based on the learning style of the patient and family. The establishment of a close relationship between the APP and the patient and family enables the formation of this individualized approach. Methods of education include a review of printed information along with online learning.

Multidisciplinary care

During each timepoint of care, patients and families often need medical, educational and psychosocial support. Thus, a multidisciplinary team is invaluable.

A strong team infrastructure composed of multidisciplinary members is essential to meet the needs of the patients and families and to be successful in providing this therapy. A strong infrastructure enables the team to focus on safe, efficient and comprehensive care.

Nurses help patients and families through their daily experiences in the outpatient and inpatient settings, helping patients become acclimated to a new institution with different routines and lending a familiar, consistent face to an otherwise brand-new experience.

Nurse practitioners provide consistency and familiarity for patients and families along with supportive care, education and anticipatory guidance regarding side effects.

Physicians conduct a comprehensive meeting with patients and families, reviewing the therapy and all side effects in detail, and are available throughout therapy.

It is imperative that the team be readily available to answer questions and provide support and reassurance throughout their journey.

Communication with the referring facility

A strong infrastructure enables successful collaboration and effective communication between the CAR T-cell team and the referring team to meet the needs of the patient and family.

At the beginning, data — including treatment summaries, labs, echocardiograms, pulmonary function tests, etc — need to be collected to determine eligibility. During receipt of CAR T cells, the CAR T-cell institution should provide consistent updates regarding the status of the patient to the referring providers.

Once patients are ready to return home, there needs to be clear communication from the oncologist or nurse practitioner regarding the required follow-up and an overview of what was discussed with the patient and family. The referring team must be informed of required study visits and labs; medications needed, such as IV immune globulin; and medications to avoid, such as systemic steroids.

Clinical research coordinators play a leading role in sharing this information. A strong team infrastructure is instrumental in providing comprehensive care and is key to the success of any CAR T-cell program.

Psychosocial, financial needs

Although CAR T-cell therapy is becoming more widely available to patients, many families look at this therapy as a last chance of cure for their child, and there is often anxiety prior to receiving it. Thus, these patients and families often have many psychosocial needs, and psychosocial support must begin at the time of referral.

Families are required to stay within close proximity to the treating institution for the first 4 to 6 weeks of therapy, causing separation from siblings, other caregivers and their support system. Psychosocial team members — including social workers, psychologists and child life therapists — are integral to the care of these patients and families.

A major stressor is uncontrollability and concerns about the child’s survival. Parents are worried about their child staying healthy enough to undergo treatment. The patients must have controlled disease and should not have any major organ toxicities.

Once they arrive at the treating institution, concerns include the side effects of the therapy and whether it will be successful. Families also worry about next steps if CAR T-cell therapy does not work.

There can be financial struggles, as well. Choosing this therapy is a big commitment for patients and families, as it requires intermittent follow-up at the treating institution after they return home. Families often need help with resources to support these follow-up visits. For APPs, being aware of resources for the patient and family and how to connect them to these resources is key.

Scheduling almost always involves working around school, work and siblings’ schedules. This can be stressful, because families are often trying to maintain a sense of normalcy and are trying to get back into a normal routine.

It is essential that APPs understand these unique needs of patients undergoing CAR T-cell therapy and their families in order to ensure the best experience.

References:

Callahan C, et al. Clin J Oncol Nurs. 2019;doi:10.1188/19.CJON.S1.35-41.

Kazak AE, et al. Pediatr Blood Cancer. 2015;doi:10.1002/pbc.25730.

Nasta SD, et al. Abstract 3240. Presented at: ASH Annual Meeting and Exposition; Dec. 7-10, 2019; Orlando.

Rodriguez EM, et al. J Pediatr Psychol. 2012;doi:10.1093/jpepsy/jsr054.

Taylor L, et al. Clin J Oncol Nurs. 2019;doi:10.1188/19.CJON.S1.20-26.

For more information:

Diane Baniewicz, MSN, RN, CRNP, is a nurse practitioner on the immunotherapy team at Children’s Hospital of Philadelphia. She can be reached at baniewicz@email.chop.edu.

Amy Barry, MSN, RN, PPCNP-BC, is a nurse practitioner with the Cancer Immunotherapy Program at Children’s Hospital of Philadelphia. She can be reached at barryae@email.chop.edu.

Colleen Callahan, MSN, RN, CRNP, is a nurse practitioner in the Cancer Center at Children’s Hospital of Philadelphia. She can be reached at callahan@email.chop.edu.

Disclosures: Callahan reports a consultant role with Novartis. Baniewicz and Barry report no relevant financial disclosures.

HemOnc Today collaborated with Association of Pediatric Hematology/Oncology Nurses (APHON) on the submission of this column. To contribute to this column, contact Alexandra Todak at stodak@healio.com.

Chimeric antigen receptor T-cell therapy is a promising immunotherapy for children with refractory or relapsed acute lymphoblastic leukemia who otherwise have limited treatment options.

Colleen Callahan, MSN, RN, CRNP
Colleen Callahan
Diane Baniewicz, MSN, RN, CRNP
Diane Baniewicz

For many of these patients — especially those who have experienced multiple relapses — and their families, this has been a long, complicated journey. Many have experienced years of remissions and relapses and, as a result, often come to CAR T-cell therapy medically well-educated.

However, regardless of their prior experience, these patients and families require education regarding CAR T-cell therapy, because it is new and different from anything they have encountered in the past. APPs are an essential component of the multidisciplinary team that provides such education at various timepoints of the treatment trajectory. As part of our unique role in our nurse practitioner-run clinic, APPs are able to build rapport, provide anticipatory guidance and support in answering questions, act as a point person for coordination of care, and help to manage side effects of therapy.

A ‘continuous, ongoing process’

To receive CAR T-cell therapy, patients and families must travel to the treating institution for T-cell collection and consent. They must return once CAR T cells are ready to be infused and stay locally for 4 to 6 weeks.

During their stay, patients receive lymphodepleting chemotherapy and CAR T-cell infusion, have frequent outpatient follow-up visits and monitoring, and are admitted if febrile. Four weeks after infusion, patients undergo an evaluation of response. The results are reviewed with the patients and families a few days later. After patients go home, they return to the CAR T-cell institution at specific timepoints for required follow-up.

There are multiple opportunities for patient and family education along this CAR T-cell therapy timeline; this education is a continuous, ongoing process. Early discussion and education set expectations and can ease anxiety about the unknown.

Opportunities for education include during the referral process, T-cell collection and CAR T-cell therapy consent visit, lymphodepleting chemotherapy week, the infusion visit, follow-up visits immediately after infusion, and throughout long-term follow-up.

Anticipatory guidance and education include discussion of the therapy and how CAR T cells work, the treatment process, and both immediate and long-term side effects. Education requires an individualized approach based on the learning style of the patient and family. The establishment of a close relationship between the APP and the patient and family enables the formation of this individualized approach. Methods of education include a review of printed information along with online learning.

PAGE BREAK

Multidisciplinary care

During each timepoint of care, patients and families often need medical, educational and psychosocial support. Thus, a multidisciplinary team is invaluable.

A strong team infrastructure composed of multidisciplinary members is essential to meet the needs of the patients and families and to be successful in providing this therapy. A strong infrastructure enables the team to focus on safe, efficient and comprehensive care.

Nurses help patients and families through their daily experiences in the outpatient and inpatient settings, helping patients become acclimated to a new institution with different routines and lending a familiar, consistent face to an otherwise brand-new experience.

Nurse practitioners provide consistency and familiarity for patients and families along with supportive care, education and anticipatory guidance regarding side effects.

Physicians conduct a comprehensive meeting with patients and families, reviewing the therapy and all side effects in detail, and are available throughout therapy.

It is imperative that the team be readily available to answer questions and provide support and reassurance throughout their journey.

Communication with the referring facility

A strong infrastructure enables successful collaboration and effective communication between the CAR T-cell team and the referring team to meet the needs of the patient and family.

At the beginning, data — including treatment summaries, labs, echocardiograms, pulmonary function tests, etc — need to be collected to determine eligibility. During receipt of CAR T cells, the CAR T-cell institution should provide consistent updates regarding the status of the patient to the referring providers.

Once patients are ready to return home, there needs to be clear communication from the oncologist or nurse practitioner regarding the required follow-up and an overview of what was discussed with the patient and family. The referring team must be informed of required study visits and labs; medications needed, such as IV immune globulin; and medications to avoid, such as systemic steroids.

Clinical research coordinators play a leading role in sharing this information. A strong team infrastructure is instrumental in providing comprehensive care and is key to the success of any CAR T-cell program.

Psychosocial, financial needs

Although CAR T-cell therapy is becoming more widely available to patients, many families look at this therapy as a last chance of cure for their child, and there is often anxiety prior to receiving it. Thus, these patients and families often have many psychosocial needs, and psychosocial support must begin at the time of referral.

Families are required to stay within close proximity to the treating institution for the first 4 to 6 weeks of therapy, causing separation from siblings, other caregivers and their support system. Psychosocial team members — including social workers, psychologists and child life therapists — are integral to the care of these patients and families.

PAGE BREAK

A major stressor is uncontrollability and concerns about the child’s survival. Parents are worried about their child staying healthy enough to undergo treatment. The patients must have controlled disease and should not have any major organ toxicities.

Once they arrive at the treating institution, concerns include the side effects of the therapy and whether it will be successful. Families also worry about next steps if CAR T-cell therapy does not work.

There can be financial struggles, as well. Choosing this therapy is a big commitment for patients and families, as it requires intermittent follow-up at the treating institution after they return home. Families often need help with resources to support these follow-up visits. For APPs, being aware of resources for the patient and family and how to connect them to these resources is key.

Scheduling almost always involves working around school, work and siblings’ schedules. This can be stressful, because families are often trying to maintain a sense of normalcy and are trying to get back into a normal routine.

It is essential that APPs understand these unique needs of patients undergoing CAR T-cell therapy and their families in order to ensure the best experience.

References:

Callahan C, et al. Clin J Oncol Nurs. 2019;doi:10.1188/19.CJON.S1.35-41.

Kazak AE, et al. Pediatr Blood Cancer. 2015;doi:10.1002/pbc.25730.

Nasta SD, et al. Abstract 3240. Presented at: ASH Annual Meeting and Exposition; Dec. 7-10, 2019; Orlando.

Rodriguez EM, et al. J Pediatr Psychol. 2012;doi:10.1093/jpepsy/jsr054.

Taylor L, et al. Clin J Oncol Nurs. 2019;doi:10.1188/19.CJON.S1.20-26.

For more information:

Diane Baniewicz, MSN, RN, CRNP, is a nurse practitioner on the immunotherapy team at Children’s Hospital of Philadelphia. She can be reached at baniewicz@email.chop.edu.

Amy Barry, MSN, RN, PPCNP-BC, is a nurse practitioner with the Cancer Immunotherapy Program at Children’s Hospital of Philadelphia. She can be reached at barryae@email.chop.edu.

Colleen Callahan, MSN, RN, CRNP, is a nurse practitioner in the Cancer Center at Children’s Hospital of Philadelphia. She can be reached at callahan@email.chop.edu.

Disclosures: Callahan reports a consultant role with Novartis. Baniewicz and Barry report no relevant financial disclosures.

HemOnc Today collaborated with Association of Pediatric Hematology/Oncology Nurses (APHON) on the submission of this column. To contribute to this column, contact Alexandra Todak at stodak@healio.com.

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