Supportive Care in Pediatric Oncology: Opportunities and Future Directions
Abstract
:Simple Summary
Abstract
1. Introduction
2. Optimizing Outcomes with Clinical Practice Guideline-Consistent Care
2.1. Clinical Practice Guideline (CPG) Implementation
2.2. Addressing Gaps in Evidence Regarding Pediatric Supportive Care
3. Empowering Voices in Pediatric Oncology
3.1. Challenges in Addressing Psychosocial Needs
3.2. Giving Adolescents a Voice
3.3. Considering the Caregiver’s Perspective
3.4. Use of Patient-Reported Outcomes
4. Recognizing the Benefit of Palliative Care
5. Survivorship and Life after Cancer Therapy
6. Interventions, Models of Care, and Supportive Care Plans
7. Leveraging Technology in Supportive Care
- Registry data: Efforts to collect uniform and systematic data on specific cohorts can provide high-quality observational data, and are a well-established research data source. Examples include the National Cancer Institute Surveillance, Epidemiology, and End Results program; the Center for International Blood and Marrow Transplantation Research; and the CONCORD Program for global surveillance of cancer survival. While these datasets provide high-fidelity data, substantial person-time and effort is required in order to establish, maintain, and update them.
- Administrative or claims data: Health administrative data, such as data submitted for reimbursement related to diagnoses and services rendered during patient visits and hospitalizations, can be compiled longitudinally into datasets. Examples that have been leveraged for research include the Pediatric Health Information System and Medicare Benefits Schedule [72].
- Electronic health record (EHR): Mining the EHRs for RWD holds enormous potential due to the highly granular data. However, data are collected for clinical purposes and may be stored as unstructured text, limiting their usability without advanced data science support. Data are often limited to single institutions, although consortia are being developed by investigators and healthcare aggregators [73,74,75].
- Healthcare aggregators/health technology data companies: Combining data across varied clinical sources and sites using a common patient identifier has been performed by commercial and non-profit entities, and may help to overcome the disparate nature of healthcare delivery. Sentinel, OptumLabs, and Flatiron Health are established healthcare aggregators, but pediatric patients are underrepresented, and equivalent resources in this space are lacking.
8. Fundamental General Pediatric Care Should Remain Embedded in Oncology
8.1. Advances in Approaches to and Optimization of Nutrition
8.2. Nutritional Status
8.3. Improved Dietary Intake
8.4. Exercise
9. Conclusions and Future Directions
Author Contributions
Funding
Conflicts of Interest
References
- Committee on Standards for Developing Trustworthy Clinical Practice Guidelines. Clinical Practice Guidelines We Can Trust; National Academies Press (US): Washington, DC, USA, 2011. [Google Scholar] [CrossRef]
- Seelisch, J.; Sung, L.; Kelly, M.J.; Raybin, J.L.; Beauchemin, M.; Dvorak, C.C.; Kelly, K.P.; Nieder, M.L.; Noll, R.B.; Thackray, J.; et al. Identifying clinical practice guidelines for the supportive care of children with cancer: A report from the Children’s Oncology Group. Pediatr. Blood Cancer 2019, 66, e27471. [Google Scholar] [CrossRef]
- Goldman, J.; Wakefield, D.; Pulaski, R.; Orsey, A. Use of an institutional-treatment algorithm to improe the control of chemotherapy-induced nausea and vomiting (CINV). Pediatr. Blood Cancer 2018, 65, 111. [Google Scholar]
- Waddimba, A.C.; Mohr, D.C.; Beckman, H.B.; Mahoney, T.L.; Young, G.J. Job satisfaction and guideline adherence among physicians: Moderating effects of perceived autonomy support and job control. Soc. Sci. Med. 2019, 233, 208–217. [Google Scholar] [CrossRef]
- Cheng, Q.; Gibb, M.; Graves, N.; Finlayson, K.; Pacella, R.E. Cost-effectiveness analysis of guideline-based optimal care for venous leg ulcers in Australia. BMC Health Serv. Res. 2018, 18, 421. [Google Scholar] [CrossRef]
- Rodriguez-Martinez, C.E.; Sossa-Briceno, M.P.; Castro-Rodriguez, J.A. Cost-effectiveness of the utilization of “good practice” or the lack thereof according to a bronchiolitis evidence-based clinical practice guideline. J. Eval. Clin. Pract. 2019, 25, 682–688. [Google Scholar] [CrossRef]
- Dupuis, L.L.; Boodhan, S.; Sung, L.; Portwine, C.; Hain, R.; McCarthy, P.; Holdsworth, M.; Pediatric Oncology Group of Ontario (POGO). Guideline for the classification of the acute emetogenic potential of antineoplastic medication in pediatric cancer patients. Pediatr. Blood Cancer 2011, 57, 191–198. [Google Scholar] [CrossRef]
- Loeffen, E.A.H.; Kremer, L.C.M.; Mulder, R.L.; Font-Gonzalez, A.; Dupuis, L.L.; Sung, L.; Robinson, P.D.; van de Wetering, M.D.; Tissing, W.J.E. The importance of evidence-based supportive care practice guidelines in childhood cancer-a plea for their development and implementation. Support. Care Cancer 2017, 25, 1121–1125. [Google Scholar] [CrossRef]
- iPOG Network. International Pediatric Oncology Guidelines in Supportive Care Network; iPOG Network: Toronto, ON, Canada, 2023. [Google Scholar]
- Guyatt, G.H.; Oxman, A.D.; Vist, G.E.; Kunz, R.; Falck-Ytter, Y.; Alonso-Coello, P.; Schunemann, H.J.; Group, G.W. GRADE: An emerging consensus on rating quality of evidence and strength of recommendations. BMJ 2008, 336, 924–926. [Google Scholar] [CrossRef]
- Gagliardi, A.; Brouwers, M.; Palda, V.; Lemieux-Charles, L.; Grimshaw, J. How can we improve guideline use? A conceptual framework of implementability. Implement. Sci. 2011, 6, 26. [Google Scholar] [CrossRef]
- Sugalski, A.J.; Lo, T.; Beauchemin, M.; Grimes, A.C.; Robinson, P.D.; Walsh, A.M.; Santesso, N.; Dang, H.; Fisher, B.T.; Wrightson, A.R.; et al. Facilitators and barriers to clinical practice guideline-consistent supportive care at pediatric oncology institutions: A Children’s Oncology Group study. Implement. Sci. Commun. 2021, 2, 106. [Google Scholar] [CrossRef]
- Loeffen, E.A.; Mulder, R.L.; Kremer, L.C.; Michiels, E.M.; Abbink, F.C.; Ball, L.M.; Segers, H.; Mavinkurve-Groothuis, A.M.; Smit, F.J.; Vonk, I.J.; et al. Development of clinical practice guidelines for supportive care in childhood cancer—Prioritization of topics using a Delphi approach. Support. Care Cancer 2015, 23, 1987–1995. [Google Scholar] [CrossRef] [PubMed]
- Mustafa, R.A.; Garcia, C.A.C.; Bhatt, M.; Riva, J.J.; Vesely, S.; Wiercioch, W.; Nieuwlaat, R.; Patel, P.; Hanson, S.; Newall, F.; et al. GRADE notes: How to use GRADE when there is “no” evidence? A case study of the expert evidence approach. J. Clin. Epidemiol. 2021, 137, 231–235. [Google Scholar] [CrossRef] [PubMed]
- Robinson, P.D.; Tomlinson, D.; Beauchemin, M.; Gibson, P.; Grimes, A.; Dadzie, G.; Safi, M.; Vettese, E.; Dupuis, L.L.; Sung, L. Identifying clinical practice guidelines for symptom control in pediatric oncology. Support. Care Cancer 2021, 29, 7049–7055. [Google Scholar] [CrossRef]
- Weis, J. Psychosocial Care for Cancer Patients. Breast Care 2015, 10, 84–86. [Google Scholar] [CrossRef]
- Barnes, M.; Rice, K.; Murray, C.; Thorsteinsson, E. “Double whammy”: A rapid review of rural vs urban psychosocial cancer experiences and telehealth service in five countries during the COVID-19 pandemic. PeerJ 2022, 10, e14382. [Google Scholar] [CrossRef]
- Oprandi, M.C.; Oldrati, V.; Cavatorta, C.; Gandola, L.; Massimino, M.; Bardoni, A.; Poggi, G. The Influence of Socioeconomic Status (SES) and Processing Speed on the Psychological Adjustment and Wellbeing of Pediatric Brain Tumor Survivors. Cancers 2022, 14, 3075. [Google Scholar] [CrossRef]
- Russell, K.B.; Patton, M.; Tromburg, C.; Zwicker, H.; Guilcher, G.M.T.; Bultz, B.D.; Schulte, F. Psychosocial risk, symptom burden, and concerns in families affected by childhood cancer. Support. Care Cancer 2022, 30, 2283–2292. [Google Scholar] [CrossRef]
- Kazak, A.E.; Hwang, W.T.; Chen, F.F.; Askins, M.A.; Carlson, O.; Argueta-Ortiz, F.; Barakat, L.P. Screening for Family Psychosocial Risk in Pediatric Cancer: Validation of the Psychosocial Assessment Tool (PAT) Version 3. J. Pediatr. Psychol. 2018, 43, 737–748. [Google Scholar] [CrossRef]
- Scialla, M.A.; Canter, K.S.; Chen, F.F.; Kolb, E.A.; Sandler, E.; Wiener, L.; Kazak, A.E. Delivery of care consistent with the psychosocial standards in pediatric cancer: Current practices in the United States. Pediatr. Blood Cancer 2018, 65, e26869. [Google Scholar] [CrossRef]
- Wiener, L.; Kazak, A.E.; Noll, R.B.; Patenaude, A.F.; Kupst, M.J. Standards for the psychosocial care of children with cancer and their families: An introduction to the special issue. Pediatr. Blood Cancer 2015, 62, S419–S424. [Google Scholar] [CrossRef]
- Weaver, M.S.; Baker, J.N.; Gattuso, J.S.; Gibson, D.V.; Hinds, P.S. “Being a good patient” during times of illness as defined by adolescent patients with cancer. Cancer 2016, 122, 2224–2233. [Google Scholar] [CrossRef]
- McLaughlin, C.A.; Gordon, K.; Hoag, J.; Ranney, L.; Terwilliger, N.B.; Ureda, T.; Rodgers, C. Factors Affecting Adolescents’ Willingness to Communicate Symptoms during Cancer Treatment: A Systematic Review from the Children’s Oncology Group. J. Adolesc. Young Adult Oncol. 2019, 8, 105–113. [Google Scholar] [CrossRef] [PubMed]
- Cox, T. Caregivers reflecting on the early days of childhood cancer. Eur. J. Cancer Care 2018, 27, e12499. [Google Scholar] [CrossRef] [PubMed]
- Christensen, V.; Parker, K.; Chan, L.H.K.; Saxton, L.; Cottrell, E. ‘Never once was I thinking the c-word’: Parent perspectives on the facilitators and barriers to getting a childhood cancer diagnosis. J. Clin. Nurs. 2023, 32, 3981–3994. [Google Scholar] [CrossRef] [PubMed]
- De Castro, E.K.; Crespo, C.; Barros, L.; Armiliato, M.J.; Gregianin, L. Assessing the Relationship between PTSS in Childhood Cancer Survivors and Their Caregivers and Their Quality of Life. Pediatr. Hematol. Oncol. 2021, 38, 147–153. [Google Scholar] [CrossRef]
- Bakula, D.M.; Sharkey, C.M.; Perez, M.N.; Espeleta, H.C.; Gamwell, K.L.; Baudino, M.; Delozier, A.M.; Chaney, J.M.; Alderson, R.M.; Mullins, L.L. The Relationship between Parent Distress and Child Quality of Life in Pediatric Cancer: A Meta-Analysis. J. Pediatr. Nurs. 2020, 50, 14–19. [Google Scholar] [CrossRef]
- Salvador, Á.; Crespo, C.; Martins, A.R.; Santos, S.; Canavarro, M.C. Parents’ perceptions about their child’s illness in pediatric cancer: Links with caregiving burden and quality of life. J. Child. Fam. Stud. 2015, 24, 1129–1140. [Google Scholar] [CrossRef]
- Crespo, C.; Santos, S.; Tavares, A.; Salvador, Á. Care that matters: Family-centered care, caregiving burden, and adaptation in parents of children with cancer. Fam. Syst. Health 2016, 34, 31. [Google Scholar] [CrossRef]
- Robertson, E.G.; Wakefield, C.E.; Shaw, J.; Darlington, A.-S.; McGill, B.C.; Cohn, R.J.; Fardell, J.E. Decision-making in childhood cancer: Parents’ and adolescents’ views and perceptions. Support. Care Cancer 2019, 27, 4331–4340. [Google Scholar] [CrossRef]
- Snaman, J.; McCarthy, S.; Wiener, L.; Wolfe, J. Pediatric palliative care in oncology. J. Clin. Oncol. 2020, 38, 954. [Google Scholar] [CrossRef]
- Engstrom, T.; Tanner, S.; Lee, W.R.; Forbes, C.; Walker, R.; Bradford, N.; Pole, J.D. Patient reported outcome measure domains and tools used among adolescents and young adults with cancer: A scoping review. Crit. Rev. Oncol. Hematol. 2023, 181, 103867. [Google Scholar] [CrossRef]
- Basch, E.; Deal, A.M.; Dueck, A.C.; Scher, H.I.; Kris, M.G.; Hudis, C.; Schrag, D. Overall Survival Results of a Trial Assessing Patient-Reported Outcomes for Symptom Monitoring during Routine Cancer Treatment. JAMA 2017, 318, 197–198. [Google Scholar] [CrossRef] [PubMed]
- Horan, M.R.; Sim, J.-A.; Krull, K.R.; Ness, K.K.; Yasui, Y.; Robison, L.L.; Hudson, M.M.; Baker, J.N.; Huang, I.-C. Ten Considerations for Integrating Patient-Reported Outcomes into Clinical Care for Childhood Cancer Survivors. Cancers 2023, 15, 1024. [Google Scholar] [CrossRef] [PubMed]
- Riedl, D.; Rothmund, M.; Darlington, A.S.; Sodergren, S.; Crazzolara, R.; de Rojas, T.; Group, E.Q.o.L. Rare use of patient-reported outcomes in childhood cancer clinical trials—A systematic review of clinical trial registries. Eur. J. Cancer 2021, 152, 90–99. [Google Scholar] [CrossRef] [PubMed]
- Chen, M.; Jones, C.M.; Bauer, H.E.; Osakwe, O.; Ketheeswaran, P.; Baker, J.N.; Huang, I.-C. Barriers and opportunities for patient-reported outcome implementation: A national pediatrician survey in the United States. Children 2022, 9, 185. [Google Scholar] [CrossRef] [PubMed]
- Schepers, S.A.; Haverman, L.; Zadeh, S.; Grootenhuis, M.A.; Wiener, L. Healthcare professionals’ preferences and perceived barriers for routine assessment of patient-reported outcomes in pediatric oncology practice: Moving toward international processes of change. Pediatr. Blood Cancer 2016, 63, 2181–2188. [Google Scholar] [CrossRef]
- de Rojas, T.; Neven, A.; Towbin, A.J.; Carceller, F.; Bautista, F.; Riedl, D.; Sodergren, S.; Darlington, A.-S.; Fernandez-Teijeiro, A.; Moreno, L. Clinical research tools in pediatric oncology: Challenges and opportunities. Cancer Metastasis Rev. 2020, 39, 149–160. [Google Scholar] [CrossRef]
- Batra, A.; Yang, L.; Boyne, D.J.; Harper, A.; Cheung, W.Y.; Cuthbert, C.A. Associations between baseline symptom burden as assessed by patient-reported outcomes and overall survival of patients with metastatic cancer. Support. Care Cancer 2021, 29, 1423–1431. [Google Scholar] [CrossRef]
- Hinds, P.S.; Grossoehme, D.H.; Reeve, B.B. One Voice Is Good, But More Is Better: Symptom and Toxicity Reporting in Pediatric Oncology. Cancer Nurs. 2023, 46, 1–2. [Google Scholar] [CrossRef]
- Reeve, B.B.; Greenzang, K.A.; Sung, L. Patient-Reported Outcomes in Pediatric Patients with Cancer; American Society of Clinical Oncology Educational Book: Alexandria, VA, USA, 2023; Volume 43, p. e390272. [Google Scholar]
- Klick, J.C.; Hauer, J. Pediatric palliative care. Curr. Probl. Pediatr. Adolesc. Health Care 2010, 40, 120–151. [Google Scholar] [CrossRef]
- Himelstein, B.P.; Hilden, J.M.; Boldt, A.M.; Weissman, D. Pediatric palliative care. N. Engl. J. Med. 2004, 350, 1752–1762. [Google Scholar] [CrossRef] [PubMed]
- Zimmermann, K.; Marfurt-Russenberger, K.; Cignacco, E.; Bergstraesser, E. Bereaved parents’ perspectives on their child’s end-of-life care: Connecting a self-report questionnaire and interview data from the nationwide Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study. BMC Palliat. Care 2022, 21, 66. [Google Scholar] [CrossRef] [PubMed]
- Bona, K.; Wolfe, J. Disparities in Pediatric Palliative Care: An Opportunity to Strive for Equity. Pediatrics 2017, 140, e20171662. [Google Scholar] [CrossRef]
- Evans, A.M.; Thabrew, H.; Arroll, B.; Cole, N.; Drake, R. Audit of Psychosocial and Palliative Care Support for Children Having Allogeneic Stem Cell Transplants at the New Zealand National Allogeneic Transplant Centre. Children 2021, 8, 356. [Google Scholar] [CrossRef]
- Levine, D.R.; Baker, J.N.; Wolfe, J.; Lehmann, L.E.; Ullrich, C. Strange Bedfellows No More: How Integrated Stem-Cell Transplantation and Palliative Care Programs Can Together Improve End-of-Life Care. J. Oncol. Pract. 2017, 13, 569–577. [Google Scholar] [CrossRef]
- Vassileva, S.; Pangarso, A.W.S.; Mulatsih, S.; Sitaresmi, M.; Kaspers, G.; Mostert, S. Unmet palliative care needs of a child with cancer in Indonesia. Psychooncology 2023, 32, 170–173. [Google Scholar] [CrossRef] [PubMed]
- Bradford, N.; Henney, R.; Cashion, C.; Holland, L.; Walker, R. What cancer survivorship services do young people want? Aust. J. Cancer Nurs. 2020, 21, 9–16. [Google Scholar] [CrossRef]
- Mack, J.W.; Wolfe, J. Early integration of pediatric palliative care: For some children, palliative care starts at diagnosis. Curr. Opin. Pediatr. 2006, 18, 10–14. [Google Scholar] [CrossRef]
- Levine, D.R.; Mandrell, B.N.; Sykes, A.; Pritchard, M.; Gibson, D.; Symons, H.J.; Wendler, D.; Baker, J.N. Patients’ and Parents’ Needs, Attitudes, and Perceptions About Early Palliative Care Integration in Pediatric Oncology. JAMA Oncol. 2017, 3, 1214–1220. [Google Scholar] [CrossRef]
- Bhakta, N.; Liu, Q.; Ness, K.K.; Baassiri, M.; Eissa, H.; Yeo, F.; Chemaitilly, W.; Ehrhardt, M.J.; Bass, J.; Bishop, M.W.; et al. The cumulative burden of surviving childhood cancer: An initial report from the St Jude Lifetime Cohort Study (SJLIFE). Lancet 2017, 390, 2569–2582. [Google Scholar] [CrossRef]
- Horan, M.R.; Srivastava, D.K.; Bhakta, N.; Ehrhardt, M.J.; Brinkman, T.M.; Baker, J.N.; Yasui, Y.; Krull, K.R.; Ness, K.K.; Robison, L.L.; et al. Determinants of health-related quality-of-life in adult survivors of childhood cancer: Integrating personal and societal values through a health utility approach. EClinicalMedicine 2023, 58, 101921. [Google Scholar] [CrossRef]
- Williams, A.M.; Liu, Q.; Bhakta, N.; Krull, K.R.; Hudson, M.M.; Robison, L.L.; Yasui, Y. Rethinking Success in Pediatric Oncology: Beyond 5-Year Survival. J. Clin. Oncol. 2021, 39, 2227–2231. [Google Scholar] [CrossRef]
- Kremer, L.C.; Mulder, R.L.; Oeffinger, K.C.; Bhatia, S.; Landier, W.; Levitt, G.; Constine, L.S.; Wallace, W.H.; Caron, H.N.; Armenian, S.H.; et al. A worldwide collaboration to harmonize guidelines for the long-term follow-up of childhood and young adult cancer survivors: A report from the International Late Effects of Childhood Cancer Guideline Harmonization Group. Pediatr. Blood Cancer 2013, 60, 543–549. [Google Scholar] [CrossRef]
- Marchak, J.G.; Christen, S.; Mulder, R.L.; Baust, K.; Blom, J.M.; Brinkman, T.M.; Elens, I.; Harju, E.; Kadan-Lottick, N.S.; Khor, J.W. Recommendations for the surveillance of mental health problems in childhood, adolescent, and young adult cancer survivors: A report from the International Late Effects of Childhood Cancer Guideline Harmonization Group. Lancet Oncol. 2022, 23, e184–e196. [Google Scholar] [CrossRef]
- Pitt, E.; Cashion, C.; Rumble, S.; Bradford, N. Associations between Health Behaviors, Health Self-Efficacy, and Long-Term Outcomes in Survivors of Childhood Cancer: A Cross-Sectional Study. Semin. Oncol. Nurs. 2023, 39, 151434. [Google Scholar] [CrossRef]
- Dixon, S.B.; Liu, Q.; Chow, E.J.; Oeffinger, K.C.; Nathan, P.C.; Howell, R.M.; Leisenring, W.M.; Ehrhardt, M.J.; Ness, K.K.; Krull, K.R. Specific causes of excess late mortality and association with modifiable risk factors among survivors of childhood cancer: A report from the Childhood Cancer Survivor Study cohort. Lancet 2023, 401, 1447–1457. [Google Scholar] [CrossRef]
- Yang, L.S.; Ma, C.T.; Chan, C.H.; Luk, M.S.; Woo, H.K.; Lee, V.W.; Leung, A.W.K.; Lee, S.L.; Yeung, N.C.; Li, C.K.; et al. Awareness of diagnosis, treatment and risk of late effects in Chinese survivors of childhood cancer in Hong Kong. Health Expect. 2021, 24, 1473–1486. [Google Scholar] [CrossRef]
- Syed, I.A.; Klassen, A.F.; Barr, R.; Wang, R.; Dix, D.; Nelson, M.; Rosenberg-Yunger, Z.R.; Nathan, P.C. Factors associated with childhood cancer survivors’ knowledge about their diagnosis, treatment, and risk for late effects. J. Cancer Surviv. 2016, 10, 363–374. [Google Scholar] [CrossRef]
- Iyer, N.S.; Mitchell, H.-R.; Zheng, D.J.; Ross, W.L.; Kadan-Lottick, N.S. Experiences with the survivorship care plan in primary care providers of childhood cancer survivors: A mixed methods approach. Support. Care Cancer 2017, 23, 1547–1555. [Google Scholar] [CrossRef]
- Dixon, S.B.; Bjornard, K.L.; Alberts, N.M.; Armstrong, G.T.; Brinkman, T.M.; Chemaitilly, W.; Ehrhardt, M.J.; Fernandez-Pineda, I.; Force, L.M.; Gibson, T.M.; et al. Factors influencing risk-based care of the childhood cancer survivor in the 21st century. CA Cancer J. Clin. 2018, 68, 133–152. [Google Scholar] [CrossRef]
- Murphy, P.; Levine, A.; Lerma, T.; Young, S.; Hwang, J.; Goldsby, R. A portable survivorship care plan: A tool that helps educate and improve knowledge in childhood cancer survivors. Support. Care Cancer 2021, 29, 169–177. [Google Scholar] [CrossRef]
- Hill, R.E.; Wakefield, C.E.; Cohn, R.J.; Fardell, J.E.; Brierley, M.E.; Kothe, E.; Jacobsen, P.B.; Hetherington, K.; Mercieca-Bebber, R. Survivorship Care Plans in Cancer: A Meta-Analysis and Systematic Review of Care Plan Outcomes. Oncologist 2020, 25, e351–e372. [Google Scholar] [CrossRef] [PubMed]
- Ma, C.T.; Chou, H.W.; Lam, T.T.; Tung, Y.T.; Lai, Y.W.; Lee, L.K.; Lee, V.W.; Yeung, N.C.; Leung, A.W.; Bhatia, S.; et al. Provision of a personalized survivorship care plan and its impact on cancer-related health literacy among childhood cancer survivors in Hong Kong. Pediatr. Blood Cancer 2023, 70, e30084. [Google Scholar] [CrossRef] [PubMed]
- Pannier, S.T.; Mann, K.; Warner, E.L.; Rosen, S.; Acharya, A.; Hacking, C.; Gerdy, C.; Wright, J.; Wu, Y.P.; Kirchhoff, A.C. Survivorship care plan experiences among childhood acute lymphoblastic leukemia patients and their families. BMC Pediatr. 2019, 19, 111. [Google Scholar] [CrossRef]
- Chan, R.J.; Crichton, M.; Crawford-Williams, F.; Agbejule, O.A.; Yu, K.; Hart, N.H.; de Abreu Alves, F.; Ashbury, F.D.; Eng, L.; Fitch, M.; et al. The efficacy, challenges, and facilitators of telemedicine in post-treatment cancer survivorship care: An overview of systematic reviews. Ann. Oncol. 2021, 32, 1552–1570. [Google Scholar] [CrossRef] [PubMed]
- King-Dowling, S.; Psihogios, A.M.; Hill-Kayser, C.; Szalda, D.; O’Hagan, B.; Darabos, K.; Daniel, L.C.; Barakat, L.P.; Fleisher, L.; Maurer, L.A.; et al. Acceptability and feasibility of survivorship care plans and an accompanying mobile health intervention for adolescent and young adult survivors of childhood cancer. Pediatr. Blood Cancer 2021, 68, e28884. [Google Scholar] [CrossRef] [PubMed]
- Zettler, M.E. A decade of FDA approvals for pediatric cancer indications: What have we learned? EJC Paediatr. Oncol. 2023, 1, 100005. [Google Scholar] [CrossRef]
- Di Maio, M.; Perrone, F.; Conte, P. Real-World Evidence in Oncology: Opportunities and Limitations. Oncologist 2020, 25, e746–e752. [Google Scholar] [CrossRef]
- Aplenc, R.; Fisher, B.T.; Huang, Y.S.; Li, Y.; Alonzo, T.A.; Gerbing, R.B.; Hall, M.; Bertoch, D.; Keren, R.; Seif, A.E.; et al. Merging of the National Cancer Institute-funded cooperative oncology group data with an administrative data source to develop a more effective platform for clinical trial analysis and comparative effectiveness research: A report from the Children’s Oncology Group. Pharmacoepidemiol. Drug Saf. 2012, 21 (Suppl. S2), 37–43. [Google Scholar] [CrossRef]
- Miller, T.P.; Getz, K.D.; Li, Y.; Demissei, B.G.; Adamson, P.C.; Alonzo, T.A.; Burrows, E.; Cao, L.; Castellino, S.M.; Daves, M.H.; et al. Rates of laboratory adverse events by course in paediatric leukaemia ascertained with automated electronic health record extraction: A retrospective cohort study from the Children’s Oncology Group. Lancet Haematol. 2022, 9, e678–e688. [Google Scholar] [CrossRef]
- Miller, T.P.; Li, Y.; Kavcic, M.; Troxel, A.B.; Huang, Y.S.; Sung, L.; Alonzo, T.A.; Gerbing, R.; Hall, M.; Daves, M.H.; et al. Accuracy of Adverse Event Ascertainment in Clinical Trials for Pediatric Acute Myeloid Leukemia. J. Clin. Oncol. 2016, 34, 1537–1543. [Google Scholar] [CrossRef] [PubMed]
- Miller, T.P.; Li, Y.; Getz, K.D.; Dudley, J.; Burrows, E.; Pennington, J.; Ibrahimova, A.; Fisher, B.T.; Bagatell, R.; Seif, A.E.; et al. Using electronic medical record data to report laboratory adverse events. Br. J. Haematol. 2017, 177, 283–286. [Google Scholar] [CrossRef] [PubMed]
- Macnair, A.; Love, S.B.; Murray, M.L.; Gilbert, D.C.; Parmar, M.K.B.; Denwood, T.; Carpenter, J.; Sydes, M.R.; Langley, R.E.; Cafferty, F.H. Accessing routinely collected health data to improve clinical trials: Recent experience of access. Trials 2021, 22, 340. [Google Scholar] [CrossRef]
- Lensen, S.; Macnair, A.; Love, S.B.; Yorke-Edwards, V.; Noor, N.M.; Martyn, M.; Blenkinsop, A.; Diaz-Montana, C.; Powell, G.; Williamson, E.; et al. Access to routinely collected health data for clinical trials—Review of successful data requests to UK registries. Trials 2020, 21, 398. [Google Scholar] [CrossRef]
- McKay, D.R.; Nguyen, P.; Wang, A.; Hanna, T.P. A population-based study of administrative data linkage to measure melanoma surgical and pathology quality. PLoS ONE 2022, 17, e0263713. [Google Scholar] [CrossRef] [PubMed]
- Tervonen, H.E.; Purdie, S.; Creighton, N. Using data linkage to enhance the reporting of cancer outcomes of Aboriginal and Torres Strait Islander people in NSW, Australia. BMC Med. Res. Methodol. 2019, 19, 245. [Google Scholar] [CrossRef]
- Huser, V.; Cimino, J.J. Linking ClinicalTrials.gov and PubMed to Track Results of Interventional Human Clinical Trials. PLoS ONE 2013, 8, e68409. [Google Scholar] [CrossRef]
- Shlomo, N. Overview of Data Linkage Methods for Policy Design and Evaluation; Springer: Cham, Switzerland, 2019. [Google Scholar] [CrossRef]
- Singh, G.K.; Bowers, A.P. A guide to navigating administrative data linkage for research. Eur. J. Cardiovasc. Nurs. 2023, 22, 745–750. [Google Scholar] [CrossRef]
- Dusetzina, S.B.; Tyree, S.; Meyer, A.M.; Meyer, A.; Green, L.; Carpenter, W.R. Linking Data for Health Services Research: A Framework and Instructional Guide; Agency for Healthcare Research and Quality: Rockville, MD, USA, 2014.
- Available online: https://cms.wellcome.org/sites/default/files/enabling-data-linkage-to-maximise-value-of-public-health-research-data-summary-phrdf-mar15.pdf (accessed on 1 September 2023).
- Miller, T.P.; Li, Y.; Masino, A.J.; Vallee, E.; Burrows, E.; Ramos, M.; Alonzo, T.A.; Gerbing, R.; Castellino, S.M.; Hawkins, D.S.; et al. Automated Ascertainment of Typhlitis From the Electronic Health Record. JCO Clin. Cancer Inf. 2022, 6, e2200081. [Google Scholar] [CrossRef]
- Signorelli, C.; Wakefield, C.E.; Fardell, J.E.; Foreman, T.; Johnston, K.A.; Emery, J.; Thornton-Benko, E.; Girgis, A.; Lie, H.C.; Cohn, R.J.; et al. The Role of Primary Care Physicians in Childhood Cancer Survivorship Care: Multiperspective Interviews. Oncologist 2019, 24, 710–719. [Google Scholar] [CrossRef]
- Lipkin, P.H.; Macias, M.M.; Council On Children With Disabilities, S.O.D.; Behavioral, P. Promoting Optimal Development: Identifying Infants and Young Children with Developmental Disorders Through Developmental Surveillance and Screening. Pediatrics 2020, 145, e20193449. [Google Scholar] [CrossRef] [PubMed]
- Sima, J.L.; Perkins, S.M.; Haggstrom, D.A. Primary care physician perceptions of adult survivors of childhood cancer. J. Pediatr. Hematol. Oncol. 2014, 36, 118–124. [Google Scholar] [CrossRef]
- Jain, J.; Qorri, B.; Szewczuk, M.R. The crucial role of primary care providers in the long-term follow-up of adult survivors of childhood cancer. Cancer Manag. Res. 2019, 11, 3411–3418. [Google Scholar] [CrossRef] [PubMed]
- Lawrence, R.A.; McLoone, J.K.; Wakefield, C.E.; Cohn, R.J. Primary Care Physicians’ Perspectives of Their Role in Cancer Care: A Systematic Review. J. Gen. Intern. Med. 2016, 31, 1222–1236. [Google Scholar] [CrossRef]
- Elgarten, C.; Wohlschlaeger, A.; Levy, E.; Tadley, K.; Wang, L.; Atkinson, M.; Roberson, H.; Olson, T.; Bunin, N.; Heimall, J.; et al. Quality Improvement Initiative to Improve Time and Adherence to Revaccination after Hematopoietic Cell Transplantation: Implementation of a Revaccination Clinic within the Transplantation Program. Transpl. Cell Ther. 2023, 29, 635-e1. [Google Scholar] [CrossRef] [PubMed]
- Levy, E.; Wohlschlaeger, A.; Atkinson, M.; Bunin, N.; Elgarten, C.W.; Fisher, B.T.; Grupp, S.A.; Hankins, P.; Heimall, J.; Khan, R.; et al. Delivering Post Hematopoietic Stem Cell Transplant (HSCT) Vaccines in a Pediatrician’s Office versus Specialty Care Setting. Biol. Blood Marrow Transplant. 2020, 26, S81. [Google Scholar] [CrossRef]
- Wohlschlaeger, A.; Levy, E.; Khan, R.N.; Heimall, J.; Fisher, B.T.; Metjian, T.A.; Elgarten, C.W.; Freedman, J.L. A Retrospective Review of Revaccination Patterns in Pediatric Hematopoietic Stem Cell Transplantation Recipients. J. Pediatr. Hematol. Oncol. Nurs. 2023, 40, 259–264. [Google Scholar] [CrossRef]
- Rogers, P.C.; Barr, R.D. The relevance of nutrition to pediatric oncology: A cancer control perspective. Pediatr. Blood Cancer 2020, 67 (Suppl. S3), e28213. [Google Scholar] [CrossRef]
- Bona, K.; London, W.B.; Guo, D.; Frank, D.A.; Wolfe, J. Trajectory of Material Hardship and Income Poverty in Families of Children Undergoing Chemotherapy: A Prospective Cohort Study. Pediatr. Blood Cancer 2016, 63, 105–111. [Google Scholar] [CrossRef]
- Barr, R.; Atkinson, S.; Pencharz, P.; Arguelles, G.R. Nutrition and cancer in children. Pediatr. Blood Cancer 2008, 50, 437. [Google Scholar] [CrossRef]
- Sala, A.; Pencharz, P.; Barr, R.D. Children, cancer, and nutrition--A dynamic triangle in review. Cancer 2004, 100, 677–687. [Google Scholar] [CrossRef] [PubMed]
- Ladas, E.J.; Sacks, N.; Meacham, L.; Henry, D.; Enriquez, L.; Lowry, G.; Hawkes, R.; Dadd, G.; Rogers, P. A multidisciplinary review of nutrition considerations in the pediatric oncology population: A perspective from children’s oncology group. Nutr. Clin. Pract. 2005, 20, 377–393. [Google Scholar] [CrossRef] [PubMed]
- Joffe, L.; Ladas, E.J. Nutrition during childhood cancer treatment: Current understanding and a path for future research. Lancet Child. Adolesc. Health 2020, 4, 465–475. [Google Scholar] [CrossRef] [PubMed]
- Orgel, E.; Genkinger, J.M.; Aggarwal, D.; Sung, L.; Nieder, M.; Ladas, E.J. Association of body mass index and survival in pediatric leukemia: A meta-analysis. Am. J. Clin. Nutr. 2016, 103, 808–817. [Google Scholar] [CrossRef]
- Ringwald-Smith, K.; Hill, R.; Evanoff, L.; Martin, J.; Sacks, N. When Reality and Research Collide: Guidelines Are Essential for Optimal Nutrition Care in Pediatric Oncology. J. Pediatr. Hematol. Oncol. 2022, 44, e144–e151. [Google Scholar] [CrossRef]
- McCarthy, H.D. Body fat measurements in children as predictors for the metabolic syndrome: Focus on waist circumference. Proc. Nutr. Soc. 2006, 65, 385–392. [Google Scholar] [CrossRef]
- Fabozzi, F.; Trovato, C.M.; Diamanti, A.; Mastronuzzi, A.; Zecca, M.; Tripodi, S.I.; Masetti, R.; Leardini, D.; Muratore, E.; Barat, V.; et al. Management of Nutritional Needs in Pediatric Oncology: A Consensus Statement. Cancers 2022, 14, 3378. [Google Scholar] [CrossRef]
- Clinton, S.K.; Giovannucci, E.L.; Hursting, S.D. The World Cancer Research Fund/American Institute for Cancer Research Third Expert Report on Diet, Nutrition, Physical Activity, and Cancer: Impact and Future Directions. J. Nutr. 2020, 150, 663–671. [Google Scholar] [CrossRef]
- Cohen, J.E.; Wakefield, C.E.; Cohn, R.J. Nutritional interventions for survivors of childhood cancer. Cochrane Database Syst. Rev. 2016, 2016, CD009678. [Google Scholar] [CrossRef]
- Karlage, R.E.; Wilson, C.L.; Zhang, N.; Kaste, S.; Green, D.M.; Armstrong, G.T.; Robison, L.L.; Chemaitilly, W.; Srivastava, D.K.; Hudson, M.M.; et al. Validity of anthropometric measurements for characterizing obesity among adult survivors of childhood cancer: A report from the St. Jude Lifetime Cohort Study. Cancer 2015, 121, 2036–2043. [Google Scholar] [CrossRef]
- Selwood, K.; Ward, E.; Gibson, F. Assessment and management of nutritional challenges in children’s cancer care: A survey of current practice in the United Kingdom. Eur. J. Oncol. Nurs. 2010, 14, 439–446. [Google Scholar] [CrossRef] [PubMed]
- Co-Reyes, E.; Li, R.; Huh, W.; Chandra, J. Malnutrition and obesity in pediatric oncology patients: Causes, consequences, and interventions. Pediatr. Blood Cancer 2012, 59, 1160–1167. [Google Scholar] [CrossRef] [PubMed]
- Skiba, M.B.; McElfresh, J.J.; Howe, C.L.; Crane, T.E.; Kopp, L.M.; Jacobs, E.T.; Thomson, C.A. Dietary Interventions for Adult Survivors of Adolescent and Young Adult Cancers: A Systematic Review and Narrative Synthesis. J. Adolesc. Young Adult Oncol. 2020, 9, 315–327. [Google Scholar] [CrossRef] [PubMed]
- Keats, M.R.; Culos-Reed, S.N.; Courneya, K.S.; McBride, M. An examination of physical activity behaviors in a sample of adolescent cancer survivors. J. Pediatr. Oncol. Nurs. 2006, 23, 135–142. [Google Scholar] [CrossRef]
- Murnane, A.; Gough, K.; Thompson, K.; Holland, L.; Conyers, R. Adolescents and young adult cancer survivors: Exercise habits, quality of life and physical activity preferences. Support. Care Cancer 2015, 23, 501–510. [Google Scholar] [CrossRef]
- Crowder, S.L.; Buro, A.W.; Stern, M. Physical activity interventions in pediatric, adolescent, and young adult cancer survivors: A systematic review. Support. Care Cancer 2022, 30, 4635–4649. [Google Scholar] [CrossRef]
- Rustler, V.; Hagerty, M.; Daeggelmann, J.; Marjerrison, S.; Bloch, W.; Baumann, F.T. Exercise interventions for patients with pediatric cancer during inpatient acute care: A systematic review of literature. Pediatr. Blood Cancer 2017, 64, e26567. [Google Scholar] [CrossRef]
- Menichetti, J.; Villa, S.; Magnani, T.; Avuzzi, B.; Bosetti, D.; Marenghi, C.; Morlino, S.; Rancati, T.; Van Poppel, H.; Salvioni, R.; et al. Lifestyle interventions to improve the quality of life of men with prostate cancer: A systematic review of randomized controlled trials. Crit. Rev. Oncol. Hematol. 2016, 108, 13–22. [Google Scholar] [CrossRef]
- Brown, J.C.; Winters-Stone, K.; Lee, A.; Schmitz, K.H. Cancer, physical activity, and exercise. Compr. Physiol. 2012, 2, 2775–2809. [Google Scholar] [CrossRef]
- Invernizzi, M.; de Sire, A.; Lippi, L.; Venetis, K.; Sajjadi, E.; Gimigliano, F.; Gennari, A.; Criscitiello, C.; Cisari, C.; Fusco, N. Impact of Rehabilitation on Breast Cancer Related Fatigue: A Pilot Study. Front. Oncol. 2020, 10, 556718. [Google Scholar] [CrossRef]
- Patel, P.; Robinson, P.D.; van der Torre, P.; Tomlinson, D.; Seelisch, J.; Oberoi, S.; Morgan, J.E.; Hinds, P.S.; Gotte, M.; Gibson, F.; et al. Guideline for the management of fatigue in children and adolescents with cancer or pediatric hematopoietic cell transplant recipients: 2023 update. EClinicalMedicine 2023, 63, 102147. [Google Scholar] [CrossRef] [PubMed]
- Wurz, A.; McLaughlin, E.; Lategan, C.; Chamorro Vina, C.; Grimshaw, S.L.; Hamari, L.; Gotte, M.; Kesting, S.; Rossi, F.; van der Torre, P.; et al. The international Pediatric Oncology Exercise Guidelines (iPOEG). Transl. Behav. Med. 2021, 11, 1915–1922. [Google Scholar] [CrossRef] [PubMed]
- Caru, M.; Levesque, A.; Rao, P.; Dandekar, S.; Terry, C.; Brown, V.; McGregor, L.; Schmitz, K. A scoping review to map the evidence of physical activity interventions in post-treatment adolescent and young adult cancer survivors. Crit. Rev. Oncol. Hematol. 2022, 171, 103620. [Google Scholar] [CrossRef] [PubMed]
Development, Use, and Implementation of Clinical Practice Guidelines |
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Empowering patients and families and giving children a voice in their care |
Addressing psychosocial factors and the needs of patients and families |
Using patient-reported outcomes routinely |
Recognizing the benefit of and actively incorporating early palliative care |
Optimizing survivorship, reducing late effects, and promoting survivorship research |
Leveraging technology to study and improve supportive care |
Re-embedding general pediatric and developmental care into oncologic care |
Registry Data | National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) Program; Center for International Blood and Marrow Transplantation Research (CIBMTR); CONCORD Program for Global Surveillance of Cancer Survival |
Administrative or Claims data | Pediatric Health Information System (PHIS) and Medicare Benefits Data |
Electronic health record | Institution based medical record systems (e.g., EPIC, Cerner, All-Scripts) |
Healthcare aggregators/health technology data companies | Sentinel, OptumLabs, and Flatiron Health |
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© 2023 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
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Freedman, J.L.; Beeler, D.M.; Bowers, A.; Bradford, N.; Cheung, Y.T.; Davies, M.; Dupuis, L.L.; Elgarten, C.W.; Jones, T.M.; Jubelirer, T.; et al. Supportive Care in Pediatric Oncology: Opportunities and Future Directions. Cancers 2023, 15, 5549. https://doi.org/10.3390/cancers15235549
Freedman JL, Beeler DM, Bowers A, Bradford N, Cheung YT, Davies M, Dupuis LL, Elgarten CW, Jones TM, Jubelirer T, et al. Supportive Care in Pediatric Oncology: Opportunities and Future Directions. Cancers. 2023; 15(23):5549. https://doi.org/10.3390/cancers15235549
Chicago/Turabian StyleFreedman, Jason L., Dori M. Beeler, Alison Bowers, Natalie Bradford, Yin Ting Cheung, Maya Davies, L. Lee Dupuis, Caitlin W. Elgarten, Torri M. Jones, Tracey Jubelirer, and et al. 2023. "Supportive Care in Pediatric Oncology: Opportunities and Future Directions" Cancers 15, no. 23: 5549. https://doi.org/10.3390/cancers15235549
APA StyleFreedman, J. L., Beeler, D. M., Bowers, A., Bradford, N., Cheung, Y. T., Davies, M., Dupuis, L. L., Elgarten, C. W., Jones, T. M., Jubelirer, T., Miller, T. P., Patel, P., Phillips, C. A., Wardill, H. R., & Orsey, A. D. (2023). Supportive Care in Pediatric Oncology: Opportunities and Future Directions. Cancers, 15(23), 5549. https://doi.org/10.3390/cancers15235549