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1.
Patient Educ Couns ; 116: 107935, 2023 11.
Article in English | MEDLINE | ID: mdl-37579619

ABSTRACT

OBJECTIVE: Supporting childhood cancer survivors with neurocognitive late effects is critical and requires additional attention in the research arena. This convening project's aim was to engage parents, healthcare providers, and education stakeholders in order to identify research priorities regarding patient/family-provider communication about neurocognitive impacts associated with childhood cancer. METHODS: Specific components of the Stakeholder Engagement in quEstion Development (SEED) method were combined with an online e-Delphi consensus building approach. Multiple modalities were utilized for engagement including in-person/hybrid meetings, email/Zoom/call communications, targeted-asynchronous learning activities by stakeholders, iterative surveys, and hands-on conceptual modeling. RESULTS: Twenty-four (parents n = 10, educators n = 5, healthcare providers n = 9) participated in the year-long project, generating 8 research questions in the stakeholder priority domains of training families/caregiver, access of neuropsychological assessment, tools to facilitate communication and training medical providers. CONCLUSIONS: This paper illustrates a successful stakeholder convening process using multi-modal engagement to establish research priorities. The resulting questions can be utilized to guide research projects that will fill gaps to providing optimal care to children with neurocognitive late effects. PRACTICE IMPLICATIONS: This process can be used as a template for tackling other healthcare issues that span across disciplines and domains, where stakeholders have rare opportunities to collaborate.


Subject(s)
Neoplasms , Humans , Child , Neoplasms/complications , Caregivers , Delivery of Health Care , Health Personnel , Research
2.
J Nurses Prof Dev ; 39(2): 87-91, 2023.
Article in English | MEDLINE | ID: mdl-36848444

ABSTRACT

The creation of professional advancement programs is an important goal to support development of nurses and other team members. Maintaining consistency among programs within one institution poses a challenge. The development of an overarching framework has provided this structure. Our framework is composed of core components, key elements, and best practices that can be applied to ensure consistency among all programs. This framework can be applied to existing programs or guide new eight programs.

3.
J Pediatr ; 255: 89-97.e1, 2023 04.
Article in English | MEDLINE | ID: mdl-36336006

ABSTRACT

OBJECTIVE: The objective of this study was to describe the burden of adverse kidney and hypertension outcomes in patients evaluated by pediatric nephrology in a multidisciplinary survivorship clinic. STUDY DESIGN: Retrospective chart review of all patients followed up by nephrology in our multidisciplinary survivorship clinic from August 2013 to June 2021. Data included clinic blood pressure, longitudinal ambulatory blood pressure monitoring (ABPM), echocardiography, serum creatinine, and first-morning urine protein/creatinine ratios. For patients with multiple ABPMs, results of initial and most recent ABPMs were compared. RESULTS: Of 422 patients followed in the multidisciplinary cancer survivorship clinic, 130 were seen by nephrology. The median time after therapy completion to first nephrology visit was 8 years. The most common diagnoses were leukemia/myelodysplastic syndrome (27%), neuroblastoma (24%), and Wilms tumor (15%). At the last follow-up, 68% had impaired kidney function, 38% had a clinical diagnosis of hypertension, and 12% had proteinuria. There were 91 ABPMs performed in 55 (42%) patients. Patients with multiple ABPMs (n = 21) had statistically significant reductions in overall median blood pressure loads: systolic initial load 37% vs most recent 10% (P = .005) and diastolic load 36% vs 14% (P = .017). Patients with impaired kidney function were more likely to have received ifosfamide. Patients with hypertension were more likely to have received total body irradiation or allogeneic stem cell transplant. CONCLUSIONS: History of leukemia/myelodysplastic syndrome, neuroblastoma, and Wilms tumor was frequent among survivors seen by nephrology. There was significant improvement in cardiovascular measures with increased recognition of hypertension and subsequent treatment.


Subject(s)
Cancer Survivors , Hypertension , Kidney Neoplasms , Leukemia , Myelodysplastic Syndromes , Neuroblastoma , Renal Insufficiency , Wilms Tumor , Humans , Child , Retrospective Studies , Blood Pressure Monitoring, Ambulatory/methods , Hypertension/complications , Blood Pressure , Survivors , Wilms Tumor/complications , Renal Insufficiency/complications , Kidney Neoplasms/complications , Kidney Neoplasms/therapy , Kidney , Neuroblastoma/complications , Myelodysplastic Syndromes/complications
4.
Cancer Nurs ; 45(4): E746-E757, 2022.
Article in English | MEDLINE | ID: mdl-35728085

ABSTRACT

BACKGROUND: Family management (FM) challenges of maternal caregivers of young adult survivors of childhood brain tumors are well documented, but there are no evidence-based caregiver interventions to improve FM. OBJECTIVES: The aims of this study were to (1) generate the knowledge necessary for developing a caregiver intervention (stage 0) and (2) modify an existing, efficacious intervention by engaging stakeholders (stage 1). METHODS: Stages 0 and 1 of the National Institutes of Health Stage Model for Behavioral Intervention Development and the FM Styles Framework were used in this study. RESULTS: In stage 0, families with condition-focused FM patterns were identified as at risk for poor problem solving. The 12-item Condition Management Ability scale of the FM Measures was selected as the screener to identify condition-focused maternal caregivers. Problem solving was identified as a potential mechanism for promoting behavior change. In stage 1, Bright IDEAS for Everyday Living was modified by integrating the FM Styles Framework creating Training in Problem Solving for Caregivers of Young Adult Survivors of Childhood Brain Tumors. Qualitative and quantitative assessments of feasibility and acceptability by maternal caregivers were excellent and used to improve selected areas of concern. CONCLUSION: Feedback from stakeholders indicates that Training in Problem Solving is a promising approach to shifting FM patterns and improving the functioning of caregivers, young adult survivors, and families. IMPLICATIONS FOR NURSING PRACTICE: When developing interventions, the use of systemic methods can provide both clinically based and scientifically acceptable solutions. Those interventions based on both problem solving and FM are potentially promising but need further testing.


Subject(s)
Brain Neoplasms , Caregivers , Brain Neoplasms/therapy , Caregivers/education , Family , Humans , Problem Solving , Survivors , Young Adult
5.
J Pediatr Psychol ; 47(10): 1096-1106, 2022 10 19.
Article in English | MEDLINE | ID: mdl-35482609

ABSTRACT

OBJECTIVE: Fewer than one-third of childhood cancer survivors receive follow-up from an adult provider, and adolescent and young adults (AYAs) from structurally minoritized sociodemographic groups often face health disparities that can impact transition to adult-oriented care. The primary aim of this study was to determine the relation among sociodemographic factors, cumulative effects, and transition beliefs/expectations and goals, and the moderating role of health competence beliefs in AYA survivors of childhood cancer. METHODS: A total of 195 AYAs (aged 15-29) reported sociodemographic information, completed the Transition Readiness Inventory assessing positive beliefs/expectations and goals related to transition, and completed the Health Competence Beliefs Inventory assessing health perceptions, healthcare satisfaction, cognitive competence, and autonomy. A cumulative sociodemographic factor variable was computed to investigate the potential additive effects of multiple sociodemographic factors associated with disparities. T-tests, Pearson correlations, and multivariate linear regressions were used. RESULTS: Cumulative sociodemographic factors were not related to transition readiness, and insurance type was the only factor associated with health competence beliefs and transition readiness, such that AYAs with public insurance reported lower healthcare satisfaction, cognitive competence, and transition goals relative to those with private insurance. There were no interaction effects; however, health competence beliefs were significantly associated with transition beliefs/expectations and goals. CONCLUSION: Public insurance is a barrier to holding positive beliefs/expectations and goals about transition, yet other sociodemographic factors associated with risks for poor transfer were not related to transition readiness. Multi-level interventions to reduce disparities and improve transition readiness should target health competence beliefs and barriers created by insurance.


Subject(s)
Cancer Survivors , Neoplasms , Transition to Adult Care , Young Adult , Adolescent , Humans , Survivors/psychology , Neoplasms/therapy , Neoplasms/psychology
6.
J Pediatr Health Care ; 36(2): 174-180, 2022.
Article in English | MEDLINE | ID: mdl-33750601

ABSTRACT

As the number of Advanced Practice Providers (APPs) has increased across health care settings, institutions have identified the need to provide opportunities for the advancement, growth, and development of APPs. An APP Professional Advancement Program was developed and implemented at our freestanding, pediatric academic medical center that employs over 700 APPs. This program was designed to support all APPs regardless of their role and practice setting by recognizing their accomplishments and providing the tools and resources needed to pursue opportunities to further their professional development and leadership. This article describes the development, implementation, and sustainment of an APP Professional Advancement Program.


Subject(s)
Academic Medical Centers , Leadership , Career Mobility , Child , Humans
7.
Pediatr Blood Cancer ; 69(3): e29537, 2022 03.
Article in English | MEDLINE | ID: mdl-34971017

ABSTRACT

BACKGROUND: Neuroblastoma is the most common extracranial solid tumor in children. Those with high-risk disease are treated with multimodal therapy, including high-dose chemotherapy, stem cell transplant, radiation, and immunotherapy that have led to multiple long-term complications in survivors. In the late 1990s, consolidation therapy involved myeloablative conditioning including total body irradiation (TBI) with autologous stem cell rescue. Recognizing the significant long-term toxicities of exposure to TBI, more contemporary treatment protocols have removed this from conditioning regimens. This study examines an expanded cohort of 48 high-risk neuroblastoma patients to identify differences in the late effect profiles for those treated with TBI and those treated without TBI. PROCEDURE: Data on the study cohort were collected from clinic charts, provider documentation in the electronic medical record of visits to survivorship clinic, including all subspecialists, and ancillary reports of laboratory and diagnostic tests done as part of risk-based screening at each visit. RESULTS: All 48 survivors of BMT for high-risk neuroblastoma had numerous late effects of therapy, with 73% having between five and 10 late effects. TBI impacted some late effects significantly, including growth hormone deficiency (GHD), bone outcomes, and cataracts. CONCLUSION: Although high-risk neuroblastoma survivors treated with TBI have significant late effects, those treated without TBI also continue to have significant morbidity related to high-dose chemotherapy and local radiation. A multidisciplinary care team assists in providing comprehensive care to those survivors who are at highest risk for significant late effects.


Subject(s)
Neuroblastoma , Whole-Body Irradiation , Antineoplastic Combined Chemotherapy Protocols/therapeutic use , Child , Disease Progression , Humans , Neuroblastoma/complications , Stem Cell Transplantation/adverse effects , Survivors , Whole-Body Irradiation/adverse effects
8.
Semin Oncol Nurs ; 37(3): 151163, 2021 06.
Article in English | MEDLINE | ID: mdl-34144848

ABSTRACT

OBJECTIVES: To provide a summary of the emerging and ongoing survivorship challenges facing childhood, adolescent, and young adult cancer survivors and their families. DATA SOURCES: Research and review articles, websites, and clinical guidelines specific to childhood cancer survivorship were used. CONCLUSION: Many challenges exist in assuring quality long-term follow-up and risk-based screening for childhood cancer survivors. Although many childhood cancer survivors survive well into adulthood, they are at risk for a vast number of later complications of their cancer treatment necessitating annual cancer surveillance. In addition, many childhood cancer survivors are not engaging in long-term follow-up recommendations for clinic attendance, risk-based surveillance, and screening for potentially life-ending events. Pediatric oncology nurses and advanced practice nurses have played an enormous role in the design of childhood cancer survivorship programs and are an integral member of the multidisciplinary health care team who care for this population. Nurses have an obligation to continue to advance the survivorship care of childhood cancer survivors and lead interventional opportunities to improve the lifelong health-related quality of life and overall physical health. IMPLICATIONS FOR NURSING PRACTICE: Pediatric oncology nurses and advanced practice registered nurses must have a working knowledge of the many late effects that childhood cancer treatment has on the long-term health of childhood cancer survivors. Nurses are well-placed in positions to continue the efforts begun more than 2 decades prior by pediatric oncology nurses who saw the value and necessity of designated survivorship programs.


Subject(s)
Cancer Survivors , Neoplasms , Adolescent , Adult , Aftercare , Child , Humans , Quality of Life , Survivorship , Young Adult
9.
Pediatr Blood Cancer ; 68(3): e28884, 2021 03.
Article in English | MEDLINE | ID: mdl-33416214

ABSTRACT

BACKGROUND: Self-management interventions for adolescent and young adult (AYA) survivors of childhood cancer are needed. The present study reports on the acceptability and feasibility of delivering survivorship care plans (SCPs) and an accompanying app to AYA. PROCEDURE: AYA (n = 224) ages 15-29 who completed treatment for cancer were randomized and received a digital SCP only or an SCP plus a mobile app intended to enhance self-management. For 16 weeks, the app delivered one to two daily messages complementing information in their SCP and tailored based on age, treatment, and health goal. Data are presented on feasibility, self-reported acceptability (including satisfaction and perceived benefits) and its relationship to app engagement (for those in app group), and feedback from qualitative interviews conducted with 10 AYA. RESULTS: The SCP and app proved feasible as evidenced by high recruitment and retention, access to technology, time analysis, moderate app engagement, and minimal technical issues. However, 12% reported never reading the SCP and 8% never used the app. The app and SCP were acceptable to AYA, and SCP acceptability ratings did not differ between groups. For those with the app, acceptability was positively related to message engagement. AYA recommended enhanced individualization and design features of the SCP and app. CONCLUSIONS: Results support the use of tailored SCPs and mobile health interventions for most AYA, as well as the need for further refinement and research. Delivery of SCPs and digital interventions are acceptable and feasible to AYA survivors, and may help promote health-related knowledge and survivorship self-management.


Subject(s)
Cancer Survivors/statistics & numerical data , Health Promotion , Mobile Applications/statistics & numerical data , Neoplasms/prevention & control , Patient Care Planning/standards , Survivorship , Adolescent , Adult , Child , Feasibility Studies , Female , Follow-Up Studies , Humans , Male , Motivation , Prognosis , Survival Rate , Young Adult
10.
J Psychosoc Oncol ; 39(5): 629-645, 2021.
Article in English | MEDLINE | ID: mdl-33191861

ABSTRACT

PURPOSE: To examine associations between fathers' and mothers' appraisals of family management and physical and emotional health-related quality of life (QOL) for young adult survivors of childhood brain tumors. DESIGN: Cross-sectional. SAMPLE: 47 mothers and 39 fathers (39-67 years old); 47 survivors (18-33 years old). METHODS: Analyses evaluated relationships among family management (Survivor's Daily Life, Condition Management Ability, Condition Management Effort, Family Life Difficulty, View of Condition Impact, Parental Mutuality), quality of life, and parental role. FINDINGS: Except for Parental Mutuality, family management ratings were not significantly different for mothers and fathers, and parental views of survivors' physical and emotional QOL improved with better family management. Parental role moderated associations between physical and emotional QOL and Survivors' Daily Life and between emotional QOL and Condition Management Ability, Condition Management Effort, and View of Condition Impact. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: Assess and address survivor QOL through family management from multiple perspectives.


Subject(s)
Brain Neoplasms , Quality of Life , Adolescent , Adult , Aged , Brain Neoplasms/therapy , Cross-Sectional Studies , Fathers , Female , Humans , Male , Middle Aged , Mothers , Survivors , Young Adult
11.
Psychooncology ; 29(1): 164-172, 2020 01.
Article in English | MEDLINE | ID: mdl-31713265

ABSTRACT

PURPOSE: Despite cure, adolescents and young adults (AYA) who complete cancer treatment remain at risk for numerous physical and psychological late effects. However, engagement in recommended follow-up care, knowledge of cancer treatment history and risks, and adoption of health promoting behaviors are often suboptimal. The pilot randomized controlled trial assessed the feasibility and acceptability of a text messaging intervention (THRIVE; Texting Health Resources to Inform, motiVate, and Engage) designed to promote well-being, and health knowledge and behaviors. METHODS: Sixty-one AYA who recently completed cancer therapy enrolled and were randomized to receive THRIVE (n = 31) or an AYA survivor handbook (n = 30). Participants from both groups completed baseline measures and follow-up surveys 16 weeks later. AYA randomized to THRIVE received one to two health-related text messages per day over 16 weeks. RESULTS: THRIVE demonstrated a high level of acceptability and feasibility. Exploratory analyses highlighted promising improvements in knowledge, fruit/vegetable intake, and perceptions of health vulnerability. CONCLUSIONS: Text messaging is an acceptable and feasible intervention approach for improving well-being and health of AYA survivors. Future research is needed to test the impact of text messaging in a larger trial, including whether or not such an intervention can improve clinical outcomes, such as survivors' engagement in follow-up care.


Subject(s)
Cancer Survivors/psychology , Health Promotion/methods , Neoplasms/rehabilitation , Text Messaging/statistics & numerical data , Adolescent , Feasibility Studies , Female , Humans , Male , Mindfulness/methods , Motivation , Neoplasms/psychology , Social Support , Young Adult
12.
J Pediatr Oncol Nurs ; 36(6): 402-412, 2019.
Article in English | MEDLINE | ID: mdl-31046569

ABSTRACT

Due to the complexity of cancer late effects, the education required to provide anticipatory guidance and support to the caregivers of adolescent and young adult (AYA) survivors of childhood brain tumors can be difficult. Therefore, identifying challenges to family management (FM) could be helpful in anticipating complications with the integration of tumor and treatment late effects into family life. Building on previous research that described FM for children with chronic conditions, children who survived cancer, and the Family Management Styles Framework, the purpose of this study was to identify FM challenges for caregivers of AYA survivors of childhood brain tumors to guide clinical practice and research. Directed content analysis was used to identify FM challenges in data from semistructured interviews with 45 maternal caregivers for AYA survivors of childhood brain tumors living with them. Caregivers were largely White (89%) with an average age of 52 years, educated beyond the high school level (67%), and were partnered or married (53%). On average, caregivers had been caring for the AYA for 21 years since diagnosis, and 56% of their survivors had moderate functional restrictions. A primary and a secondary analyst were assigned to the data for each interview and completed a single summary matrix. A list of challenges was created by the research team based on Family Management Styles Framework, the literature, and clinical expertise. Seven core challenges to FM were identified: ensuring survivor well-being, supporting survivor independence, encouraging sibling well-being, planning family activities, sustaining parents as caregivers, attending to survivor late effects, and providing support and advocacy.


Subject(s)
Brain Neoplasms/psychology , Cancer Survivors/psychology , Caregivers/psychology , Chronic Disease/psychology , Family Relations/psychology , Parents/psychology , Quality of Life/psychology , Adolescent , Adult , Female , Humans , Male , Middle Aged , Young Adult
13.
J Neurooncol ; 143(2): 305-312, 2019 Jun.
Article in English | MEDLINE | ID: mdl-30982198

ABSTRACT

PURPOSE: Survivors of pediatric brain tumors often have neurodevelopmental late effects, such as inattention. Symptoms may mirror those of attention-deficit/hyperactivity disorder (ADHD), which affects ~ 5-8% of the general population. This retrospective study of survivors followed at a large tertiary care center examined the prevalence of a clinical diagnosis of ADHD, and risk factors associated with ADHD diagnosis and ADHD-related medication use. METHODS: A retrospective chart review of brain tumor survivors (n = 528), diagnosed between 2000 and 2015, who were at least 6 years old and 2 years from the end of tumor-directed therapy or from diagnosis, if no interventions were received. Clinical and demographic data were extracted from the medical record. RESULTS: Survivors were 55.7% male with mean age 8.15 ± 4.4 (0.0-16.0) years at brain tumor diagnosis. The most common diagnoses were low-grade glioma, medulloblastoma, and craniopharyngioma, with 52.5% of tumors supratentorial. Of the survivors, 81.3% received surgery, 40.0% radiation therapy, and 36.6% chemotherapy. Sixty-nine survivors (13.1%) had ADHD diagnoses, 105 (19.9%) had symptoms of ADHD without diagnoses, and 64 (12.1%) had ADHD medication use. ADHD diagnosis was associated with younger age at tumor diagnosis (p = 0.05) and supratentorial tumor location (p = 0.001). ADHD diagnosis was not associated with gender, tumor type, or treatment type. CONCLUSIONS: Survivors of brain tumors are at increased risk of ADHD and related symptoms. The greatest increase in risk occurs for survivors with diagnoses at younger ages and supratentorial tumors. Additional research is warranted, as select survivors may benefit from behavioral or pharmacologic ADHD treatments to optimize functioning.


Subject(s)
Attention Deficit Disorder with Hyperactivity/diagnosis , Brain Neoplasms/complications , Survivors/statistics & numerical data , Adolescent , Adult , Attention Deficit Disorder with Hyperactivity/etiology , Child , Child, Preschool , Female , Follow-Up Studies , Humans , Male , Prognosis , Retrospective Studies , Survival Rate , Young Adult
14.
Clin J Oncol Nurs ; 23(2): 35-41, 2019 04 01.
Article in English | MEDLINE | ID: mdl-30880817

ABSTRACT

BACKGROUND: This article presents an overview of pediatric relapsed and refractory acute lymphoblastic leukemia (ALL) and chimeric antigen receptor (CAR) T-cell therapy in pediatric patients. OBJECTIVES: Acute and chronic post-CAR T-cell effects and considerations are discussed, along with survivorship considerations. METHODS: A case study illustrates the identification and management of physiologic and psychosocial sequelae. FINDINGS: B-cell aplasia, hypogammaglobulinemia, infections, and cumulative effects of CAR T-cell therapy and other treatments are a concern in the pediatric population. Unique to pediatric and young adult survivors of childbearing potential are implications for post-treatment fertility. Financial toxicities and psychosocial needs require a family-centered approach to interventions that address the impact of CAR T-cell therapy not only on the patient, but also on caregivers and siblings.


Subject(s)
Immunotherapy, Adoptive , Pediatrics , Precursor Cell Lymphoblastic Leukemia-Lymphoma/therapy , Survival Rate , Humans , Precursor Cell Lymphoblastic Leukemia-Lymphoma/physiopathology , Precursor Cell Lymphoblastic Leukemia-Lymphoma/psychology
15.
J Fam Psychol ; 32(3): 321-332, 2018 04.
Article in English | MEDLINE | ID: mdl-29698006

ABSTRACT

Little is known about how families systemically incorporate the work of caring for adolescent and young adult (AYA) survivors of childhood brain tumors who often remain dependent on their families well into adulthood. The primary aim of this study was to develop a typology of family management (FM) patterns for AYA survivors. The secondary aims were to compare them with FM patterns previously described for children with chronic health conditions and to validate the patterns using quantitative and qualitative data. Guided by the Family Management Styles Framework, a sequential, mixed-methods design was used to gather quantitative data from 186 mothers (primary caregivers) and 134 AYA survivors. FM patterns (family focused; somewhat family focused; somewhat condition focused; and condition focused) were identified using cluster analysis of data from the Family Management Measure. FM patterns were found to be similar to those for children with chronic health physical conditions and were significantly related to maternal quality of life, survivor quality of life (health-related quality of life [self- and mother proxy report]), cancer-related variables (treatment intensity, medical late effects), and family functioning in theoretically meaningfully ways. Significant demographic characteristics included private insurance and AYA survivors' engagement in school or employment. Qualitative analysis of data from 45 interviews with mothers from the larger sample provided additional support for and elaborated descriptions of FM patterns. Identification of FM patterns moves the science of family caregiving forward by aggregating data into a conceptually based typology, thereby taking into account the complex intersection of the condition, the family, and condition management. (PsycINFO Database Record


Subject(s)
Attitude to Health , Brain Neoplasms/psychology , Caregivers/psychology , Family/psychology , Quality of Life/psychology , Survivors/psychology , Adolescent , Adult , Chronic Disease , Cluster Analysis , Female , Humans , Male , Mothers/psychology , Young Adult
16.
J Cancer Educ ; 33(5): 1075-1081, 2018 10.
Article in English | MEDLINE | ID: mdl-28299542

ABSTRACT

This study aimed to assess college providers' basic knowledge of the health risks of young adult cancer survivors (YAS) and related care guidelines and to determine whether an educational in-service is an effective platform for increasing college health providers' knowledge about survivorship care at a large university health center. During phase 1, staff from college health centers and office of disabilities in the Philadelphia area (n = 40 staff members from 24 colleges/universities) completed a needs assessment on their experiences with YAS and preferences for education and care coordination. During phase 2, a 1-h educational in-service, informed by results of the survey, was provided to 18 health center medical providers. While most providers indicated that YAS are at risk for chronic health conditions because of cancer treatment, nearly all were unfamiliar with the content of published long-term follow-up guidelines for cancer survivorship. Over half did not have knowledge of cancer survivorship services in their area. All respondents were interested in more education on cancer survivorship care. Attendees of the in-service increased their knowledge of survivorship follow-up guidelines, awareness of local survivorship resources, and comfort with caring for YAS at posttest relative to baseline. The in-service was highly acceptable to providers and feasible to implement. College providers had little baseline knowledge of cancer survivorship guidelines, but were motivated to obtain more information. Through an educational in-service, college health providers may be better equipped to provide acute and longitudinal survivorship care to a vulnerable population who are at risk for inadequate engagement in risk-based follow-up care.


Subject(s)
Cancer Survivors , Clinical Competence , Student Health Services , Universities , Continuity of Patient Care , Female , Humans , Inservice Training , Male , Needs Assessment , Pennsylvania , Practice Guidelines as Topic , Surveys and Questionnaires , Young Adult
17.
J Neurooncol ; 136(1): 73-78, 2018 Jan.
Article in English | MEDLINE | ID: mdl-28887756

ABSTRACT

Measures of treatment intensity for childhood cancer are needed in research in order to control for variability in treatments. Existing measures of treatment intensity for childhood cancers do not reflect the complexities of treatment protocols for central nervous system (CNS) tumors. This paper describes the development of the Pediatric Neuro-Oncology Rating of Treatment Intensity (PNORTI). PNORTI development occurred in three phases. Phase 1: five experts in pediatric neuro-oncology created a 5-point scale of treatment intensity and 42 pediatric neuro-oncology providers completed a three-part online questionnaire to evaluate the classification system and apply the rating system to 16 sample patients. Validity was determined by respondents classifying therapy modalities into intensity levels. Inter-rater reliability was calculated from ratings of the 16 sample patients. Phase 2: three experts revised the PNORTI based on survey results and 18 pediatric neuro-oncology providers evaluated the classification system. Phase 3: ten experts in pediatric neuro-oncology refined and finalized the PNORTI and rated 10 sample patients using the PNORTI. Agreement between median ratings of the survey respondents and criterion raters for chemotherapy intensity (r's = .82 and 1.0) and overall treatment intensity level (r's = .91 and .94) were high in Phases 1 and 2. Inter-rater reliability also was very high when using the PNORTI to classify the 16 sample patients in Phase 1 (median agreement of r = .93 and rICC = .99) and the 10 sample patients in Phase 3 (median agreement of r = .92 and rICC = .98). The PNORTI is a valid and reliable method for classifying the intensity of different treatment modalities used in pediatric neuro-oncology.


Subject(s)
Antineoplastic Protocols/standards , Brain Neoplasms/therapy , Medical Oncology/methods , Antineoplastic Combined Chemotherapy Protocols/adverse effects , Child , Humans , Medical Oncology/standards , Needs Assessment , Observer Variation , Psychometrics , Reproducibility of Results
18.
J Pediatr Oncol Nurs ; 35(1): 56-64, 2018.
Article in English | MEDLINE | ID: mdl-29094652

ABSTRACT

BACKGROUND: This study underscores the importance of the survivor/parent dynamic in understanding the knowledge level of childhood cancer survivors and their parents with regard to cancer diagnosis, treatments, and potential late effects, and to assess the impact of parental knowledge on survivor's knowledge. PROCEDURE: A convenience sample (N = 219 dyads) consisting of childhood cancer survivors with a parent match was used. Survivors 2 years out from completion of therapy, aged 16 to 25 years, and fluent in English or Spanish completed 2 questionnaires to assess adolescent and young adult and parental knowledge regarding diagnosis, treatment, and long-term risks. RESULTS: Data from the survivor/parent dyad confirm that parents are more knowledgeable than their child regarding treatment specifics. However, survivors are more accurate when assessing second tumor and fertility risk. More knowledgeable parents led to more knowledgeable survivors. CONCLUSIONS: Although parents were well-informed about treatment specifics, they were not as accurate in identifying risks appropriately. Therefore, education must be directed at both parent and survivors to maximize knowledge.


Subject(s)
Cancer Survivors/education , Cancer Survivors/psychology , Health Knowledge, Attitudes, Practice , Neoplasms/psychology , Parents/education , Parents/psychology , Survivorship , Adolescent , Adult , Child , Female , Humans , Male , Surveys and Questionnaires , Young Adult
19.
J Pediatr Psychol ; 42(9): 983-994, 2017 10 01.
Article in English | MEDLINE | ID: mdl-29046041

ABSTRACT

Objective: The development of the Transition Readiness Inventory (TRI) item pool for adolescent and young adult childhood cancer survivors is described, aiming to both advance transition research and provide an example of the application of NIH Patient Reported Outcomes Information System methods. Methods: Using rigorous measurement development methods including mixed methods, patient and parent versions of the TRI item pool were created based on the Social-ecological Model of Adolescent and young adult Readiness for Transition (SMART). Results: Each stage informed development and refinement of the item pool. Content validity ratings and cognitive interviews resulted in 81 content valid items for the patient version and 85 items for the parent version. Conclusions: TRI represents the first multi-informant, rigorously developed transition readiness item pool that comprehensively measures the social-ecological components of transition readiness. Discussion includes clinical implications, the application of TRI and the methods to develop the item pool to other populations, and next steps for further validation and refinement.


Subject(s)
Cancer Survivors/psychology , Transition to Adult Care/organization & administration , Adaptation, Psychological , Adolescent , Factor Analysis, Statistical , Female , Humans , Male , Personality Assessment , Psychometrics , Reproducibility of Results , Young Adult
20.
J Adolesc Health ; 61(5): 571-576, 2017 Nov.
Article in English | MEDLINE | ID: mdl-28917444

ABSTRACT

PURPOSE: Gonadal damage is a common consequence of treatment for pediatric malignancies. Nononcologic conditions may also utilize treatments with potential impact on fertility. Models for oncology fertility preservation programs have emerged and demonstrate that a multidisciplinary team approach can have a positive impact on referral patterns, appropriate risk counseling, and access to fertility preservation options. Expansion of programmatic breadth is needed, providing improved care to nonmalignant conditions where the disease itself may impact reproductive health or treatment modalities. METHODS: With support from the Department of Pediatrics Chair's Initiative, a multidisciplinary, hospital-wide Fertility Preservation Service was created at the Children's Hospital of Philadelphia. A centralized team provides fertility consults across the institution, allowing for risk-based counseling and facilitation of fertility preservation options (both standard care and experimental). RESULTS: Team structure, consult process, and available fertility options for prepubertal and pubertal males and females are described. Preinitiative and postinitiative referral patterns were analyzed. Postinitiative referrals from divisions outside oncology more than doubled (34% vs. 15% at baseline). CONCLUSIONS: A comprehensive model for fertility counseling provides accessible, high-value fertility preservation care to pediatric and young adult patients with a wide variety of diagnoses. A centralized point of contact ensures timely referrals and risk-based counseling and streamlines access to fertility preservation procedures.


Subject(s)
Fertility Preservation/methods , Fertility/drug effects , Neoplasms/therapy , Referral and Consultation/organization & administration , Adolescent , Child , Female , Humans , Male , Philadelphia , Reproductive Health , Young Adult
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