Skip to main content

Advertisement

SpringerLink
Log in

Palliative home-based care to pediatric cancer patients: characteristics and healthcare delivered

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Objectives

Cancer patients constitute an important group in pediatric palliative care. Though the patients’ home is the preferred place of care, little is known about the characteristics of patients attended by units that provide home assistance. Our objective is to describe the characteristics of cancer patients and healthcare delivered by a pediatric palliative care unit with a home hospitalization program.

Methods

Retrospective study based on clinical records of deceased patients attended by the pediatric palliative care unit of Madrid over 10 years. Data collected included general characteristics, type of cancer, whether they received home assistance, place of death, healthcare delivered (hospitalizations, devices, oncological treatments…), and symptom prevalence.

Results

After excluding 47 patients, the clinical records of 144 patients were analyzed. The median age at referral was 9.4 years (IQR: 5.6–14.1), 61.2% were males; 44.2% had solid non-CNS tumors, 35.4% CNS tumors, and 20.4% hematological malignancies; 137 received home care with 89 not requiring further hospital admissions and 70.1% dying at home. The median follow-up time was 1.6 months (IQR: 0.5–2.9). The most used devices were venous ports (71.4%) and oxygen (49.4%); 53.5% of the patients received oncological support therapies. The most common symptoms were pain (91.8%) dyspnea (49.0%) and fatigue (46.9%).

Conclusions

Home assistance was provided in a high number of patients, with a large proportion needing one or no hospital admissions and 70.1% of them dying at home. Further studies characterizing these patients and the factors which promote early access to palliative care are needed.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2
Fig. 3

Similar content being viewed by others

Data availability

The data used in this article could be available upon request and after approval of the institution where it was taken from (H. Infantil Universitario del Niño Jesús).

Code availability

The code used for this article is available upon request.

References

  1. Crane K (2011) Pediatric palliative care gains recognition. J Natl Cancer Inst 103(19):1432–3. [cited 2018 Aug 3] Available from: https://academic.oup.com/jnci/article-lookup/doi/10.1093/jnci/djr401

  2. Zernikow B, Szybalski K, Hübner-Möhler B, Wager J, Paulussen M, Lassay L et al (2019) Specialized pediatric palliative care services for children dying from cancer: a repeated cohort study on the developments of symptom management and quality of care over a 10-year period. Palliat Med 33(3):381–391

    Article  Google Scholar 

  3. Snaman JM, Kaye EC, Baker JN, Wolfe J (2018) Pediatric palliative oncology: the state of the science and art of caring for children with cancer. Curr Opin Pediatr 30(1):40–48

    Article  Google Scholar 

  4. Wolfe J, Hammel JF, Edwards KE, Duncan J, Comeau M, Breyer J et al (2008) Easing of suffering in children with cancer at the end of life: is care changing? J Clin Oncol 26(10):1717–23. [cited 2019 Jan 10] Available from: http://ascopubs.org/doi/10.1200/JCO.2007.14.0277

  5. Friedrichsdorf SJ, Postier A, Dreyfus J, Osenga K, Sencer S, Wolfe J (2015) Improved quality of life at end of life related to home-based palliative care in children with cancer. J Palliat Med 18(2):143–150

    Article  Google Scholar 

  6. Coller RJ, Nelson BB, Sklansky DJ, Saenz AA, Klitzner TS, Lerner CF et al (2014) Preventing hospitalizations in children with medical complexity: a systematic review. Pediatrics 134(6):e1628-1647

    Article  Google Scholar 

  7. Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, Salem-Schatz S et al (2000) Symptoms and suffering at the end of life in children with cancer. N Engl J Med 342(5):326–333

    Article  CAS  Google Scholar 

  8. Wolfe J, Orellana L, Ullrich C, Cook EF, Kang TI, Rosenberg A et al (2015) Symptoms and distress in children with advanced cancer: prospective patient-reported outcomes from the PediQUEST study. J Clin Oncol 33(17):1928–1935

    Article  Google Scholar 

  9. Hechler T, Blankenburg M, Friedrichsdorf SJ, Garske D, Hübner B, Menke A et al (2008) Parents’ perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer. Klin Padiatr 220(3):166–174

    Article  CAS  Google Scholar 

  10. Goldman A, Hewitt M, Collins GS, Childs M, Hain R, United Kingdom Children’s Cancer Study Group/Paediatric Oncology Nurses’ Forum Palliative Care Working Group (2006) Symptoms in children/young people with progressive malignant disease: United Kingdom Children’s Cancer Study Group/Paediatric Oncology Nurses Forum survey. Pediatrics. 117(6):e1179-1186

    Article  Google Scholar 

  11. Brock KE, Snaman JM, Kaye EC, Bower KA, Weaver MS, Baker JN et al (2019) Models of pediatric palliative oncology outpatient care—benefits, challenges, and opportunities. JOP 15(9):476–87. [cited 2019 Oct 9] Available from: https://ascopubs.org/doi/10.1200/JOP.19.00100

  12. Craig F, Abu-SaadHuijer H, Benini F, Kuttner L, Wood C, Feraris PC et al (2008) IMPaCCT: standards of paediatric palliative care. Schmerz 22(4):401–408

    Article  CAS  Google Scholar 

  13. Brock KE, Steineck A, Twist CJ (2016) Trends in end-of-life care in pediatric hematology, oncology, and stem cell transplant patients. Pediatr Blood Cancer 63(3):516–522

    Article  Google Scholar 

  14. Kassam A, Skiadaresis J, Alexander S, Wolfe J (2015) Differences in end-of-life communication for children with advanced cancer who were referred to a palliative care team. Pediatr Blood Cancer 62(8):1409–1413

    Article  Google Scholar 

  15. Pritchard M, Burghen E, Srivastava DK, Okuma J, Anderson L, Powell B et al (2008) Cancer-related symptoms most concerning to parents during the last week and last day of their child’s life. Pediatrics 121(5):e1301-1309

    Article  Google Scholar 

  16. Hui D, Didwaniya N, Vidal M, Shin SH, Chisholm G, Roquemore J et al (2014) Quality of end-of-life care in patients with hematologic malignancies: a retrospective cohort study. Cancer 120(10):1572–1578

    Article  Google Scholar 

  17. Snaman JM, Kaye EC, Lu JJ, Sykes A, Baker JN (2017) Palliative care involvement is associated with less intensive end-of-life care in adolescent and young adult oncology patients. J Palliat Med. 20(5):509–16. [cited 2019 Oct 9] Available from: http://www.liebertpub.com/doi/10.1089/jpm.2016.0451

  18. Haines ER, Frost AC, Kane HL, Rokoske FS (2018) Barriers to accessing palliative care for pediatric patients with cancer: a review of the literature. Cancer 124(11):2278–2288

    Article  Google Scholar 

  19. World Health Organization. WHO definition of palliative care. Available on: http://www.who.int/cancer/palliative/definition/en/. Access Nov 2017

  20. Cherny N, Catane R, Schrijvers D, Kloke M, Strasser F (2010) European Society for Medical Oncology (ESMO) Program for the integration of oncology and Palliative Care: a 5-year review of the Designated Centers’ incentive program. Ann Oncol 21(2):362–369

    Article  CAS  Google Scholar 

  21. Smith TJ, Temin S, Alesi ER, Abernethy AP, Balboni TA, Basch EM et al (2012) American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol 30(8):880–887

    Article  Google Scholar 

  22. Mark Melissa San Julian, Yang Gang, Ding Lili, Norris Robin E, Thienprayoon Rachel (2019) Location of death and end-of-life characteristics of young adults with cancer treated at a pediatric hospital. J Adolesc Young Adult Oncol 8(4):417–422. https://doi.org/10.1089/jayao.2018.0123

    Article  PubMed  Google Scholar 

  23. Bluebond-Langner M, Beecham E, Candy B, Langner R, Jones L (2013) Preferred place of death for children and young people with life-limiting and life-threatening conditions: a systematic review of the literature and recommendations for future inquiry and policy. Palliat Med 27(8):705–713

    Article  Google Scholar 

  24. Craig F, Henderson EM, Bluebond-Langner M (2015) Management of respiratory symptoms in paediatric palliative care. Curr Opin Support Palliat Care 9(3):217–26. [cited 2018 Sep 11] Available from: http://content.wkhealth.com/linkback/openurl?sid=WKPTLP:landingpage&an=01263393-201509000-00005

  25. Weltgesundheitsorganisation (ed) (2012) WHO guidelines on the pharmacological treatment of persisting pain in children with medical illnesses. World Health Organization, Geneva, 166 p

  26. Stachelek GC, Terezakis SA, Ermoian R (2019) Palliative radiation oncology in pediatric patients. Ann Palliat Med [cited 2019 Oct 9];8(3):285–92. Available from: http://apm.amegroups.com/article/view/25922/24662

  27. Ullrich CK, Mayer OH (2007) Assessment and management of fatigue and dyspnea in pediatric palliative care. Pediatr Clin N Am 54(5):735–56. [cited 2018 Sep 11] Available from: http://linkinghub.elsevier.com/retrieve/pii/S0031395507001150

  28. Pereira J, Phan T (2004) Management of bleeding in patients with advanced cancer. Oncologist 9(5):561–570

    Article  Google Scholar 

  29. Clerici CA, Veneroni L, Giacon B, Mariani L, Fossati-Bellani F (2009) Complementary and alternative medical therapies used by children with cancer treated at an Italian pediatric oncology unit. Pediatr Blood Cancer 53(4):599–604

    Article  Google Scholar 

  30. Cheng L, Wang L, He M, Feng S, Zhu Y, Rodgers C (2018) Perspectives of children, family caregivers, and health professionals about pediatric oncology symptoms: a systematic review. Support Care Cancer 26(9):2957–2971

    Article  Google Scholar 

  31. Collins JJ, Byrnes ME, Dunkel IJ, Lapin J, Nadel T, Thaler HT et al (2000) The measurement of symptoms in children with cancer. J Pain Symptom Manage 19(5):363–377

    Article  CAS  Google Scholar 

  32. Madden K, MagnoCharone M, Mills S, Dibaj S, Williams JL, Liu D et al (2019) Systematic symptom reporting by pediatric palliative care patients with cancer: a preliminary report. J Palliat Med 22(8):894–901

    Article  Google Scholar 

  33. Collins JJ, Devine TD, Dick GS, Johnson EA, Kilham HA, Pinkerton CR et al (2002) The measurement of symptoms in young children with cancer: the validation of the Memorial Symptom Assessment Scale in children aged 7–12. J Pain Symptom Manage 23(1):10–16

    Article  Google Scholar 

  34. Snaman JM, Baker JN, Ehrentraut JH, Anghelescu DL (2016) Pediatric oncology: managing pain at the end of life. Paediatr Drugs 18(3):161–180

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Pediatric Palliative Care Unit, Hospital Infantil Universitario Niño Jesús, Av. Menéndez Pelayo 65, 28009, Madrid (Madrid), Spain

    Íñigo de Noriega & Ricardo Martino

  2. Pediatric Intensive Care Unit, Hospital Infantil Universitario Niño Jesús, Madrid (Madrid), Spain

    Alberto García-Salido

  3. Pediatric Oncology Unit, Hospital Infantil Universitario Niño Jesús, Madrid (Madrid), Spain

    Blanca Herrero

Authors
  1. Íñigo de Noriega
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Alberto García-Salido
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Ricardo Martino
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Blanca Herrero
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

I. de Noriega has participated in the collection, analysis of data, and writing of the manuscript; A. García-Salido has participated in the methodological approach and structuring of the manuscript; R. Martino has participated in the conceptualization and design of the study and its review; B. Herrero has participated in the conceptualization and design of the study and its review.

Corresponding author

Correspondence to Íñigo de Noriega.

Ethics declarations

Ethics approval

This study follows the approved ethical procedures of H. Infantil Universitario del Niño Jesús, an institution from where the data was collected.

Consent to participate

N/A.

Consent for publication

N/A.

Competing interests

The authors declare no competing interests.

Additional information

Publisher's note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Noriega, Í.d., García-Salido, A., Martino, R. et al. Palliative home-based care to pediatric cancer patients: characteristics and healthcare delivered. Support Care Cancer 30, 59–67 (2022). https://doi.org/10.1007/s00520-021-06412-5

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-021-06412-5

Keywords

Search

Navigation