Multidisciplinary approach crucial to support adolescents, young adults with hematologic malignancies

Although adolescents and young adults diagnosed with a hematologic malignancy face similar short- and long-term challenges as children and adults, they may experience unique psychosocial consequences.

Thus, a multidisciplinary care approach is essential to provide necessary support to ensure high quality of care and address age-specific quality-of-life issues for this patient population, according to a review published in Blood.

“Adolescent and young adult [AYA] patients represent a small percentage of patients with cancer and, thus, health care teams have less experience and expertise with this population,” review author Olga Husson, PhD, staff scientist in the division of clinical studies at Institute of Cancer Research in the United Kingdom, told HemOnc Today. “Targeted and early AYA programs [and] services should be implemented in adult centers to address the distinct needs of AYAs with cancer and to prevent adverse late effects.”

Olga Husson, PhD
Olga Husson

Studies have shown 53% of AYA patients — defined as those aged 15 to 39 years — with cancer had six or more unmet information needs, such as those addressing late effects of cancer, financial needs and fertility issues. Thirty-five percent of patients reported unmet needs, especially with regard to peer support and psychosocial supportive care.

A study by Muffly and colleagues — published in 2016 in Cancer — showed that of 61 AYAs with a hematologic malignancy, 23% met the criteria for anxiety, 28% met criteria for depression and 13% met criteria for posttraumatic stress. Also, 46% demonstrated posttraumatic stress symptomology. These psychological morbidities persisted during treatment and early survivorship.

“The psychosocial and supportive care needs of AYAs tend to be broader in scope and intensity than such needs of younger and older patients because of the many developmental, emotional and social changes and transitions that occur during this phase of life,” Husson said.

HemOnc Today spoke with hematologic oncologists about the psychosocial impact of hematologic malignancies among AYAs addressed in the review by Husson and colleagues, how cancer affects the typical milestones of this age group, and the need for more support and interventions to ensure better quality of life.

Psychosocial and psychological challenges

Because adolescence and young adulthood comprises a wide age range, the variation of social, emotional and developmental challenges and milestones is vast.

“As such, the psychosocial concerns of patients with hematologic malignancies, or any cancer for that matter, include the impact of disease and treatment on their ability to develop age-appropriate independence and a secure sense of self, navigate social relationships — both peer and romantic — successfully, and meet desired educational and career goals,” Amanda L. Thompson, PhD, pediatric psychologist and director of patient support services in the Center for Cancer and Blood Disorders at Children’s National Health System, told HemOnc Today.

Amanda L. Thompson, PhD
Amanda L. Thompson

Milestones that occur during this age range include completing education, establishing and forming relationships, finding and keeping employment, becoming financially independent and having children.

However, a cancer diagnosis may hinder the ability of an adolescent or young adult to achieve these milestones.

According to Husson and colleagues, patients can experience any of the following psychosocial and psychological impairments:

  • dependency on others;
  • changes in physical appearance;
  • flawed self-esteem and identity development;
  • sexuality and reproductive concerns;
  • relationship distress;
  • isolation and alienation;
  • financial woes; and
  • disruption in education and unemployment.

Impairment in any milestone may have a trickle-down effect.

For instance, completing an education and becoming employed helps an AYA establish identity, financial security and health insurance. However, AYAs may miss school frequently due to doctor appointments or sickness, and they don’t always receive the proper support.

Employment issues are prevalent among AYAs with cancer.

A study by Tai and colleagues showed 24% of AYAs with cancer were unemployed due to health issues compared with 14% of controls. A study by Guy and colleagues showed a 33% unemployment rate among AYAs with cancer.

Incorporating resources into AYA programs could help these patients make the transition from treatment to employment.

“Future research might focus on effective communication strategies between workers and employers to identify appropriate work modifications to help balance the demand of work with adverse treatment-related effects, preventing patients from quitting work altogether,” Husson and colleagues wrote.

If left unaddressed, challenges with education and employment can lead to financial problems.

Many AYAs with hematologic malignancies undergo costly treatments, such as allogeneic stem cell transplantation. Others may experience a lack of financial support for child care, transportation or elderly care, and these factors could affect treatment compliance.

Psychological and psychosocial impairments can impact long-term quality of life, as well.

AYAs have increased risk for adverse long-term or late effects of cancer diagnosis and treatments. Previous research has suggested that approximately 60% will develop at least one additional chronic health condition within their lifetime.

“There is a need for optimizing the transition from AYA cancer patient to cancer survivor by improving the coordination of posttreatment care for cancer survivors,” Husson said. “Although psychosocial care is considered to be of major importance, the optimum form during aftercare remains uncertain, as is the case for the preferences of AYA with regard to follow-up care.”

Support system

Establishing a strong support system is important for anyone diagnosed with cancer, but it may be a particular challenge for AYAs.

“Patients in this age group struggle to determine who their support network really is,” Jennifer L. McNeer, MD, associate professor in the department of pediatrics at The University of Chicago, told HemOnc Today. “As patients get older, their network expands from parents to friends and significant others. As we know, support networks can fall apart, so it can be difficult to figure out who will help them get to their appointments, remember to take their medications and deal with complications.”

Family members and significant others may be negatively affected by the cancer diagnosis, as well.

“A cancer diagnosis can be stressful not only for the patient, but for the parent or caregiver, as well as siblings,” McNeer said. “Most families come together and support each other, but you do see a lot of struggles even in the strongest of families because of the strain a cancer diagnosis puts on everybody’s time and emotional well-being.”

Thompson agreed a cancer diagnosis affects the patient’s entire family.

“This is true whether that patient is 15 years old living at home with their mother, father and 10-year-old brother, or if they are 28 years old and married with a 3-year-old daughter,” she said. “Family members experience significant distress, worry and fear, and roles within the family may change.

“Couples may grow closer or may struggle to stay connected,” Thompson said, adding that family members may need their own support to manage psychosocial stressors from cancer.

Support from health care professionals with appropriate facility resources also are important for this group.

However, because a majority of AYA patients are treated in pediatric hospitals and facilities — where resources often are more appropriate for younger patients — important issues for AYAs may be overlooked.

“American research suggests that outcomes for young AYAs may be better at pediatric institutions than at institutions that treat adults,” Husson said. “Those with cancers that are more common among children (eg, leukemias) are more often treated in pediatric hospitals, whereas those with cancers that are more prevalent among adults (eg, carcinomas) are more often treated at adult academic centers.”

Providers — no matter the treatment setting — should be careful to assess for unique challenges in this group, Thompson said. These include financial toxicities, fertility concerns and relationship issues, including sexual intimacy.

“We must provide age-specific information, education and resources, and focus on supportive care and psychosocial interventions that are developmentally appropriate,” Thompson said.

Despite the prevalence of psychologic morbidity Muffly and colleagues observed in their AYA population, study results showed provider perceptions of AYA psychological impairments did not correlate with the patient-reported results. These findings suggested that health care professionals are not consistently measuring distress among AYAs during visits, researchers wrote.

“AYAs themselves may delay reporting distress-related symptoms to providers because of a passive-avoidant coping style, [an] individual patient’s effort to cope with the disease alone or a fear of stigmatization following acceptance of being diagnosed with a psychological illness,” Husson and colleagues wrote.

Unhealthy behaviors

AYAs also may be more likely to engage in high-risk behaviors, such as drinking alcohol and using drugs.

Adolescence and young adulthood are critical periods when individuals experiment and engage in new and sometimes risky behaviors. This can establish lifelong habits that can significantly affect physical development.

“It’s a natural time in life for them to experiment,” McNeer said. “If someone is under stress, it could lead them to experiment more or in more risky ways.”

AYAs need to be mindful of their treatment regimens and mixing them with any substances, she added.

“If they are on chemotherapy and trying substances, those substances could interfere with organ function and cause organ damage if they aren’t careful or honest with their oncologist,” McNeer said.

Unhealthy lifestyle behaviors tend to be common among survivors of AYA cancer.

“Positive health behaviors may prevent the onset and development of late effects among AYAs; therefore, addressing modifiable unhealthy lifestyle and fostering health-promoting behaviors may help to reduce some of these risks, but might be challenging,” Husson said. “AYAs may lack motivation to change and often do not acknowledge long-term consequences of unhealthy behavior, while work demands, relationships and parenting may challenge them to achieve lifestyle goals.”

Key interventions

Studies and clinical trials are needed to provide evidence-based guidelines, referral pathways and education to better support this patient population, experts said.

“Psychosocial research to date largely consists of AYA study samples that include all cancer types, making it difficult to tease apart psychosocial outcomes for patients with different diagnoses,” Thompson said.

AYAs with cancer is a new field of oncology research, Husson said, and more data are needed.

“AYA [patients with cancer], much more than children, suffer from delay in diagnosis, lack of centralization of care, age-adjusted expertise and follow-up care,” Husson said.

A lack of inclusion in clinical trials could play a role.

“The low rate of participation in clinical trials is seen as important reason for the lack of improvement in outcomes in AYA patients with cancer and, therefore, it is recommended to provide care at medical centers with broad access to clinical trials,” Husson said.

Closer collaboration between pediatric and adult oncology/hematology departments also is needed to improve long-term outcomes of AYAs.

A multidisciplinary team should consist of not only hematologic oncologists but specialized nurses, fertility and sexual experts, dieticians, physical therapists, psychologists and social workers.

“Early and age-appropriate intervention by a multidisciplinary team with expertise in AYA care will be critical to supporting these patients and families from the time of diagnosis, throughout treatment, and into survivorship or end-of-life,” Thompson said.

Research should focus on how best to bolster patients’ support systems.

“We need to have a good understanding of what support networks these patients rely on most, and what stressors impede ability to get the care they need. From a system standpoint, there needs to be support for these families,” McNeer said. “There has to be an ability to miss work or change school schedules, as well as a need to better understand the insurance system to get necessary services covered.”

Interventions should start at the time of diagnosis, with appropriate education about their disease and treatment options through age-specific resources.

“Access to concrete resources for financial support, fertility/sexuality counseling and educational/vocational/career development are key,” Thompson said. “Implementing novel, evidence-based psychosocial interventions, like online group-based cognitive behavioral therapy and problem-solving skills training, will be particularly important for AYAs experiencing distress.”

Successes in treatments have led to an increased number of childhood cancer survivors, who also experience unique health-related quality-of-life issues.

“Only in more recent years have we begun investigations of how to address these unmet needs,” Thompson said. “It’s an exciting time, however, as several promising interventions are being created, evaluated and implemented by leaders in AYA psychosocial science.” – by Melinda Stevens

References:

Bleyer A, et al. Pediatr Blood Cancer. 2017;doi:10.1002/pbc.26497.

Husson O, et al. Blood. 2018;doi:10.1182/blood-2017-11-778555.

Muffly LS, et al. Cancer. 2016;doi:10.1002/cncr.29868.

Tai E, et al. Cancer. 2012;doi:10.1002/cncr.27445.

For more information:

Olga Husson, PhD, can be reached at The Institute of Cancer Research, 15 Cotswold Road, Sutton SM2 5NG, United Kingdom; email: olga.husson@icr.ac.uk.

Jennifer L. McNeer, MD, can be reached at The University of Chicago, 5721 S Maryland Ave., Chicago, IL 60637; email: jmcneer@peds.bsd.uchicago.edu.

Amanda L. Thompson, PhD, can be reached at Center for Cancer and Blood Disorders, Children’s National Health System, 111 Michigan Ave. NW, Washington, DC 20010; email: althomps@childrensnational.org.

Disclosures: Husson, McNeer and Thompson report no relevant financial disclosures.

Although adolescents and young adults diagnosed with a hematologic malignancy face similar short- and long-term challenges as children and adults, they may experience unique psychosocial consequences.

Thus, a multidisciplinary care approach is essential to provide necessary support to ensure high quality of care and address age-specific quality-of-life issues for this patient population, according to a review published in Blood.

“Adolescent and young adult [AYA] patients represent a small percentage of patients with cancer and, thus, health care teams have less experience and expertise with this population,” review author Olga Husson, PhD, staff scientist in the division of clinical studies at Institute of Cancer Research in the United Kingdom, told HemOnc Today. “Targeted and early AYA programs [and] services should be implemented in adult centers to address the distinct needs of AYAs with cancer and to prevent adverse late effects.”

Olga Husson, PhD
Olga Husson

Studies have shown 53% of AYA patients — defined as those aged 15 to 39 years — with cancer had six or more unmet information needs, such as those addressing late effects of cancer, financial needs and fertility issues. Thirty-five percent of patients reported unmet needs, especially with regard to peer support and psychosocial supportive care.

A study by Muffly and colleagues — published in 2016 in Cancer — showed that of 61 AYAs with a hematologic malignancy, 23% met the criteria for anxiety, 28% met criteria for depression and 13% met criteria for posttraumatic stress. Also, 46% demonstrated posttraumatic stress symptomology. These psychological morbidities persisted during treatment and early survivorship.

“The psychosocial and supportive care needs of AYAs tend to be broader in scope and intensity than such needs of younger and older patients because of the many developmental, emotional and social changes and transitions that occur during this phase of life,” Husson said.

HemOnc Today spoke with hematologic oncologists about the psychosocial impact of hematologic malignancies among AYAs addressed in the review by Husson and colleagues, how cancer affects the typical milestones of this age group, and the need for more support and interventions to ensure better quality of life.

Psychosocial and psychological challenges

Because adolescence and young adulthood comprises a wide age range, the variation of social, emotional and developmental challenges and milestones is vast.

“As such, the psychosocial concerns of patients with hematologic malignancies, or any cancer for that matter, include the impact of disease and treatment on their ability to develop age-appropriate independence and a secure sense of self, navigate social relationships — both peer and romantic — successfully, and meet desired educational and career goals,” Amanda L. Thompson, PhD, pediatric psychologist and director of patient support services in the Center for Cancer and Blood Disorders at Children’s National Health System, told HemOnc Today.

PAGE BREAK
Amanda L. Thompson, PhD
Amanda L. Thompson

Milestones that occur during this age range include completing education, establishing and forming relationships, finding and keeping employment, becoming financially independent and having children.

However, a cancer diagnosis may hinder the ability of an adolescent or young adult to achieve these milestones.

According to Husson and colleagues, patients can experience any of the following psychosocial and psychological impairments:

  • dependency on others;
  • changes in physical appearance;
  • flawed self-esteem and identity development;
  • sexuality and reproductive concerns;
  • relationship distress;
  • isolation and alienation;
  • financial woes; and
  • disruption in education and unemployment.

Impairment in any milestone may have a trickle-down effect.

For instance, completing an education and becoming employed helps an AYA establish identity, financial security and health insurance. However, AYAs may miss school frequently due to doctor appointments or sickness, and they don’t always receive the proper support.

Employment issues are prevalent among AYAs with cancer.

A study by Tai and colleagues showed 24% of AYAs with cancer were unemployed due to health issues compared with 14% of controls. A study by Guy and colleagues showed a 33% unemployment rate among AYAs with cancer.

Incorporating resources into AYA programs could help these patients make the transition from treatment to employment.

“Future research might focus on effective communication strategies between workers and employers to identify appropriate work modifications to help balance the demand of work with adverse treatment-related effects, preventing patients from quitting work altogether,” Husson and colleagues wrote.

If left unaddressed, challenges with education and employment can lead to financial problems.

Many AYAs with hematologic malignancies undergo costly treatments, such as allogeneic stem cell transplantation. Others may experience a lack of financial support for child care, transportation or elderly care, and these factors could affect treatment compliance.

Psychological and psychosocial impairments can impact long-term quality of life, as well.

AYAs have increased risk for adverse long-term or late effects of cancer diagnosis and treatments. Previous research has suggested that approximately 60% will develop at least one additional chronic health condition within their lifetime.

“There is a need for optimizing the transition from AYA cancer patient to cancer survivor by improving the coordination of posttreatment care for cancer survivors,” Husson said. “Although psychosocial care is considered to be of major importance, the optimum form during aftercare remains uncertain, as is the case for the preferences of AYA with regard to follow-up care.”

Support system

Establishing a strong support system is important for anyone diagnosed with cancer, but it may be a particular challenge for AYAs.

PAGE BREAK

“Patients in this age group struggle to determine who their support network really is,” Jennifer L. McNeer, MD, associate professor in the department of pediatrics at The University of Chicago, told HemOnc Today. “As patients get older, their network expands from parents to friends and significant others. As we know, support networks can fall apart, so it can be difficult to figure out who will help them get to their appointments, remember to take their medications and deal with complications.”

Family members and significant others may be negatively affected by the cancer diagnosis, as well.

“A cancer diagnosis can be stressful not only for the patient, but for the parent or caregiver, as well as siblings,” McNeer said. “Most families come together and support each other, but you do see a lot of struggles even in the strongest of families because of the strain a cancer diagnosis puts on everybody’s time and emotional well-being.”

Thompson agreed a cancer diagnosis affects the patient’s entire family.

“This is true whether that patient is 15 years old living at home with their mother, father and 10-year-old brother, or if they are 28 years old and married with a 3-year-old daughter,” she said. “Family members experience significant distress, worry and fear, and roles within the family may change.

“Couples may grow closer or may struggle to stay connected,” Thompson said, adding that family members may need their own support to manage psychosocial stressors from cancer.

Support from health care professionals with appropriate facility resources also are important for this group.

However, because a majority of AYA patients are treated in pediatric hospitals and facilities — where resources often are more appropriate for younger patients — important issues for AYAs may be overlooked.

“American research suggests that outcomes for young AYAs may be better at pediatric institutions than at institutions that treat adults,” Husson said. “Those with cancers that are more common among children (eg, leukemias) are more often treated in pediatric hospitals, whereas those with cancers that are more prevalent among adults (eg, carcinomas) are more often treated at adult academic centers.”

Providers — no matter the treatment setting — should be careful to assess for unique challenges in this group, Thompson said. These include financial toxicities, fertility concerns and relationship issues, including sexual intimacy.

“We must provide age-specific information, education and resources, and focus on supportive care and psychosocial interventions that are developmentally appropriate,” Thompson said.

Despite the prevalence of psychologic morbidity Muffly and colleagues observed in their AYA population, study results showed provider perceptions of AYA psychological impairments did not correlate with the patient-reported results. These findings suggested that health care professionals are not consistently measuring distress among AYAs during visits, researchers wrote.

PAGE BREAK

“AYAs themselves may delay reporting distress-related symptoms to providers because of a passive-avoidant coping style, [an] individual patient’s effort to cope with the disease alone or a fear of stigmatization following acceptance of being diagnosed with a psychological illness,” Husson and colleagues wrote.

Unhealthy behaviors

AYAs also may be more likely to engage in high-risk behaviors, such as drinking alcohol and using drugs.

Adolescence and young adulthood are critical periods when individuals experiment and engage in new and sometimes risky behaviors. This can establish lifelong habits that can significantly affect physical development.

“It’s a natural time in life for them to experiment,” McNeer said. “If someone is under stress, it could lead them to experiment more or in more risky ways.”

AYAs need to be mindful of their treatment regimens and mixing them with any substances, she added.

“If they are on chemotherapy and trying substances, those substances could interfere with organ function and cause organ damage if they aren’t careful or honest with their oncologist,” McNeer said.

Unhealthy lifestyle behaviors tend to be common among survivors of AYA cancer.

“Positive health behaviors may prevent the onset and development of late effects among AYAs; therefore, addressing modifiable unhealthy lifestyle and fostering health-promoting behaviors may help to reduce some of these risks, but might be challenging,” Husson said. “AYAs may lack motivation to change and often do not acknowledge long-term consequences of unhealthy behavior, while work demands, relationships and parenting may challenge them to achieve lifestyle goals.”

Key interventions

Studies and clinical trials are needed to provide evidence-based guidelines, referral pathways and education to better support this patient population, experts said.

“Psychosocial research to date largely consists of AYA study samples that include all cancer types, making it difficult to tease apart psychosocial outcomes for patients with different diagnoses,” Thompson said.

AYAs with cancer is a new field of oncology research, Husson said, and more data are needed.

“AYA [patients with cancer], much more than children, suffer from delay in diagnosis, lack of centralization of care, age-adjusted expertise and follow-up care,” Husson said.

A lack of inclusion in clinical trials could play a role.

“The low rate of participation in clinical trials is seen as important reason for the lack of improvement in outcomes in AYA patients with cancer and, therefore, it is recommended to provide care at medical centers with broad access to clinical trials,” Husson said.

Closer collaboration between pediatric and adult oncology/hematology departments also is needed to improve long-term outcomes of AYAs.

A multidisciplinary team should consist of not only hematologic oncologists but specialized nurses, fertility and sexual experts, dieticians, physical therapists, psychologists and social workers.

PAGE BREAK

“Early and age-appropriate intervention by a multidisciplinary team with expertise in AYA care will be critical to supporting these patients and families from the time of diagnosis, throughout treatment, and into survivorship or end-of-life,” Thompson said.

Research should focus on how best to bolster patients’ support systems.

“We need to have a good understanding of what support networks these patients rely on most, and what stressors impede ability to get the care they need. From a system standpoint, there needs to be support for these families,” McNeer said. “There has to be an ability to miss work or change school schedules, as well as a need to better understand the insurance system to get necessary services covered.”

Interventions should start at the time of diagnosis, with appropriate education about their disease and treatment options through age-specific resources.

“Access to concrete resources for financial support, fertility/sexuality counseling and educational/vocational/career development are key,” Thompson said. “Implementing novel, evidence-based psychosocial interventions, like online group-based cognitive behavioral therapy and problem-solving skills training, will be particularly important for AYAs experiencing distress.”

Successes in treatments have led to an increased number of childhood cancer survivors, who also experience unique health-related quality-of-life issues.

“Only in more recent years have we begun investigations of how to address these unmet needs,” Thompson said. “It’s an exciting time, however, as several promising interventions are being created, evaluated and implemented by leaders in AYA psychosocial science.” – by Melinda Stevens

References:

Bleyer A, et al. Pediatr Blood Cancer. 2017;doi:10.1002/pbc.26497.

Husson O, et al. Blood. 2018;doi:10.1182/blood-2017-11-778555.

Muffly LS, et al. Cancer. 2016;doi:10.1002/cncr.29868.

Tai E, et al. Cancer. 2012;doi:10.1002/cncr.27445.

For more information:

Olga Husson, PhD, can be reached at The Institute of Cancer Research, 15 Cotswold Road, Sutton SM2 5NG, United Kingdom; email: olga.husson@icr.ac.uk.

Jennifer L. McNeer, MD, can be reached at The University of Chicago, 5721 S Maryland Ave., Chicago, IL 60637; email: jmcneer@peds.bsd.uchicago.edu.

Amanda L. Thompson, PhD, can be reached at Center for Cancer and Blood Disorders, Children’s National Health System, 111 Michigan Ave. NW, Washington, DC 20010; email: althomps@childrensnational.org.

Disclosures: Husson, McNeer and Thompson report no relevant financial disclosures.