Christina Signorelli, PhD The symptoms related to childhood cancers that first prompt parents to seek medical care may be as nonspecific as those of the flu or a number of other common ailments. Therefore, a suspicion of cancer sometimes emerges during a visit to the child’s primary care physician. Although primary care physicians lack specific oncologic training, they are well placed to provide holistic care to young and older survivors of pediatric cancers.
To shed light on this important but underreported sector of the oncology community, The ASCO Post recently spoke with Christina Signorelli, PhD, of the Kids Cancer Centre, Sydney Children’s Hospital, Australia. Dr. Signorelli was the lead investigator on a study that looked at the role of primary care physicians in childhood cancer survivorship.
Study on Model of Childhood Cancer Survivorship Care
Please tell us what inspired your study of primary care physicians’ role in childhood cancer survivorship.
This study was prompted by the growing population of childhood cancer survivors with complex survivorship needs that surpass childhood and continue well into adulthood. Survivors’ unique needs place increasing pressures on specialized hospital-based clinics, which are typically underresourced and often rely on physicians who volunteer their time.1 Although hospital-based survivorship care is preferred by many survivors, it is not a sustainable long-term option. Primary care physicians are well placed to deliver more accessible and holistic survivorship care, particularly to long-term survivors who are at lower risk. However, this is largely dependent on both survivors’ and primary care physicians’ openness to this model, which remained unknown until this study.
What was the structure of the study and its findings?
We conducted a mixed-methods, multiperspective study in two stages. In stage 1, 120 adult survivors of childhood cancer as well as parents of young survivors (younger than age 16) treated at Australian and New Zealand hospitals completed interviews evaluating their follow-up engagement and reasons for (not) accessing primary care physician–led survivorship care. Survivors nominated primary care physicians for the second stage. In stage 2, we interviewed 51 primary care physicians to assess their information, support, and communication needs, as well as their confidence in understanding survivors’ unique follow-up needs and delivering survivorship care to childhood cancer survivors.
The findings highlighted that many survivors and parents have little confidence in their primary care physician to deliver their survivorship care. Survivors reported several reasons for not seeking cancer-related care from their primary care physician; difficulties finding a ‘good’ primary care physician and perceiving a lack of knowledge about their survivorship needs by primary care physicians. Survivors reported feeling that their primary care physician was ‘disconnected’ from their cancer treatment and their survivorship care.
Primary care physicians themselves reported that they were not entirely comfortable providing follow-up care to this high-risk population and described high information and support needs. Rather than receiving general training or information about childhood cancer survivorship, primary care physicians indicated a strong preference for prescriptive, patient-specific instructions to improve their confidence in delivering such care.
Building a Partnership
What role can primary care physicians best play in the cancer care continuum for these patients?
We know that engagement in long-term follow-up care leads to better physical and psychosocial outcomes in childhood cancer survivors.2 Yet many survivors are disengaged from cancer-related care due to beliefs, costs, and logistical barriers. Primary care physicians may offer more accessible care to this population, yet the breakdown in communication with oncologists during treatment seems to deter survivors’ follow-up engagement in primary care.
Furthermore, this lack of communication appears to translate into little knowledge about survivors’ long-term risks and ongoing surveillance needs by primary care physicians. Recent research has observed a decrease in mortality with greater continuity of care.3 This reinforces the need to build a partnership between primary and tertiary providers that promotes patient engagement well into survivorship.
Moreover, increased communication between providers may renew survivors’ trust in primary care physicians to deliver their survivorship care. Improving the content and delivery of survivorship care plans from oncologists may optimize communication and facilitate access to the right care at the right time.
Closing Thought
Please share a closing thought on this crucial issue.
The partnership between primary and tertiary providers is critical to ensure that survivors remain engaged in follow-up care. Follow-up care is essential for the management and prevention of long-term health complications of treatment for childhood cancer. A combined effort will reduce the growing burden on hospital-based care while encouraging engagement in more accessible and personalized follow-up.
REFERENCES 1. Signorelli C, et al: Asia Pac J Clin Oncol 13:407-415, 2017. 2. Signorelli C, et al: Crit Rev Oncol Hematol 114:131-138, 2017. 3. Pereira Gray DJ, et al: BMJ Open 8:e021161, 2018.
This article was originally published in the American Society of Clinical Oncology (ASCO) Post and has been reproduced with permission: https://www.ascopost.com/issues/august-10-2019/the-role-of-primary-care-physicians-in-pediatric-cancer-survivorship
To shed light on this important but underreported sector of the oncology community, The ASCO Post recently spoke with Christina Signorelli, PhD, of the Kids Cancer Centre, Sydney Children’s Hospital, Australia. Dr. Signorelli was the lead investigator on a study that looked at the role of primary care physicians in childhood cancer survivorship.
Study on Model of Childhood Cancer Survivorship Care
Please tell us what inspired your study of primary care physicians’ role in childhood cancer survivorship.
This study was prompted by the growing population of childhood cancer survivors with complex survivorship needs that surpass childhood and continue well into adulthood. Survivors’ unique needs place increasing pressures on specialized hospital-based clinics, which are typically underresourced and often rely on physicians who volunteer their time.1 Although hospital-based survivorship care is preferred by many survivors, it is not a sustainable long-term option. Primary care physicians are well placed to deliver more accessible and holistic survivorship care, particularly to long-term survivors who are at lower risk. However, this is largely dependent on both survivors’ and primary care physicians’ openness to this model, which remained unknown until this study.
What was the structure of the study and its findings?
We conducted a mixed-methods, multiperspective study in two stages. In stage 1, 120 adult survivors of childhood cancer as well as parents of young survivors (younger than age 16) treated at Australian and New Zealand hospitals completed interviews evaluating their follow-up engagement and reasons for (not) accessing primary care physician–led survivorship care. Survivors nominated primary care physicians for the second stage. In stage 2, we interviewed 51 primary care physicians to assess their information, support, and communication needs, as well as their confidence in understanding survivors’ unique follow-up needs and delivering survivorship care to childhood cancer survivors.
The findings highlighted that many survivors and parents have little confidence in their primary care physician to deliver their survivorship care. Survivors reported several reasons for not seeking cancer-related care from their primary care physician; difficulties finding a ‘good’ primary care physician and perceiving a lack of knowledge about their survivorship needs by primary care physicians. Survivors reported feeling that their primary care physician was ‘disconnected’ from their cancer treatment and their survivorship care.
Primary care physicians themselves reported that they were not entirely comfortable providing follow-up care to this high-risk population and described high information and support needs. Rather than receiving general training or information about childhood cancer survivorship, primary care physicians indicated a strong preference for prescriptive, patient-specific instructions to improve their confidence in delivering such care.
Building a Partnership
What role can primary care physicians best play in the cancer care continuum for these patients?
We know that engagement in long-term follow-up care leads to better physical and psychosocial outcomes in childhood cancer survivors.2 Yet many survivors are disengaged from cancer-related care due to beliefs, costs, and logistical barriers. Primary care physicians may offer more accessible care to this population, yet the breakdown in communication with oncologists during treatment seems to deter survivors’ follow-up engagement in primary care.
Furthermore, this lack of communication appears to translate into little knowledge about survivors’ long-term risks and ongoing surveillance needs by primary care physicians. Recent research has observed a decrease in mortality with greater continuity of care.3 This reinforces the need to build a partnership between primary and tertiary providers that promotes patient engagement well into survivorship.
Moreover, increased communication between providers may renew survivors’ trust in primary care physicians to deliver their survivorship care. Improving the content and delivery of survivorship care plans from oncologists may optimize communication and facilitate access to the right care at the right time.
Closing Thought
Please share a closing thought on this crucial issue.
The partnership between primary and tertiary providers is critical to ensure that survivors remain engaged in follow-up care. Follow-up care is essential for the management and prevention of long-term health complications of treatment for childhood cancer. A combined effort will reduce the growing burden on hospital-based care while encouraging engagement in more accessible and personalized follow-up.
REFERENCES 1. Signorelli C, et al: Asia Pac J Clin Oncol 13:407-415, 2017. 2. Signorelli C, et al: Crit Rev Oncol Hematol 114:131-138, 2017. 3. Pereira Gray DJ, et al: BMJ Open 8:e021161, 2018.
This article was originally published in the American Society of Clinical Oncology (ASCO) Post and has been reproduced with permission: https://www.ascopost.com/issues/august-10-2019/the-role-of-primary-care-physicians-in-pediatric-cancer-survivorship
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