nach oben

Pediatric Nephrology

Erschienen in:

10.06.2024 | Original Article

Catastrophic healthcare expenditure and caregiver burden in pediatric chronic kidney disease — a mixed methods study from a low resource setting

verfasst von: Soumya Reddy, Nicole Scholes-Robertson, John Michael Raj, Priya Pais

Erschienen in: Pediatric Nephrology | Ausgabe 10/2024

Einloggen, um Zugang zu erhalten

Abstract

Background

Caregivers of children with chronic kidney disease (CKD) in low resource settings must provide complex medical care at home while being burdened by treatment costs often paid out-of-pocket. We hypothesize that caregiver burden in our low resource setting is greater than reported from high income countries and is associated with frequent catastrophic healthcare expenditure (CHE).

Methods

We conducted a mixed-methods study of primary caregivers of children with advanced CKD (stage 3b–5) in our private-sector referral hospital in a low resource setting. We assessed caregiver burden using the Pediatric Renal Caregiver Burden Scale (PRCBS) and measured financial burden by calculating the proportion of caregivers who experienced CHE (monthly out-of-pocket healthcare expenditure exceeding 10% of total household monthly expenditure). We performed a qualitative reflexive thematic analysis of caregiver interviews to explore sources of burden.

Results

Of the 45 caregivers included, 35 (78%) had children on maintenance dialysis (25 PD, 10 HD). Mean caregiver burden score was 141 (± 17), greater than previously reported. On comparative analysis, PRCBS scores were higher among caregivers of children with kidney failure (p = 0.005), recent hospitalization (p = 0.03), non-earning caregivers (p = 0.02), caring for > 2 dependents (p = 0.009), and with high medical expenditure (p = 0.006). CHE occurred in 43 (96%) caregivers of whom 37 (82%) paid out-of-pocket. The main themes derived relating to caregiver burden were severe financial burden, mental stress and isolation, and perpetual burden of concern.

Conclusion

Parents of children with CKD experienced severe caregiver burden with frequent CHE and relentless financial stress indicating an imminent need for social support interventions.

Graphical abstract

Nur mit Berechtigung zugänglich

Ashuntantang G, Osafo C, Olowu WA, Arogundade F, Niang A, Porter J, Naicker S, Luyckx VA (2017) Outcomes in adults and children with end-stage kidney disease requiring dialysis in sub-Saharan Africa: a systematic review. Lancet Glob Health 5:e408–e417. https://doi.org/10.1016/S2214-109X(17)30057-8CrossRefPubMed

Harambat J, Ekulu PM (2016) Inequalities in access to pediatric ESRD care: a global health challenge. Pediatr Nephrol 31:353–358. https://doi.org/10.1007/s00467-015-3263-7CrossRefPubMed

Pais P, Blydt-Hansen TD, Michael Raj JA, Dello Strologo L, Iyengar A (2021) Low renal transplantation rates in children with end-stage kidney disease: a study of barriers in a low-resource setting. Pediatr Transplant 25:e13867. https://doi.org/10.1111/petr.13867CrossRefPubMed

Kamath N, Iyengar A, George N, Luyckx VA (2019) Risk factors and rate of progression of CKD in children. Kidney Int Rep 4:1472–1477. https://doi.org/10.1016/j.ekir.2019.06.004CrossRefPubMedPubMedCentral

Banerjee S, Kamath N, Antwi S, Bonilla-Felix M (2022) Paediatric nephrology in under-resourced areas. Pediatr Nephrol 37:959–972. https://doi.org/10.1007/S00467-021-05059-YCrossRefPubMed

Lalji R, Francis A, Johnson DW, McCulloch M (2020) Health disparities in access to kidney replacement therapy amongst children and adolescents with end-stage kidney disease in low- and lower-middle-income countries. Kidney Int 97:463–465. https://doi.org/10.1016/j.kint.2019.11.030CrossRefPubMed

Bhimma R, Adhikari M, Asharam K, Connolly C (2008) The spectrum of chronic kidney disease (stages 2–5) in KwaZulu-Natal, South Africa. Pediatr Nephrol 23:1841–1846. https://doi.org/10.1007/s00467-008-0871-5CrossRefPubMed

Asinobi AO, Ademola AD, Ogunkunle OO, Mott SA (2014) Paediatric end-stage renal disease in a tertiary hospital in South West Nigeria. BMC Nephrol 15:25. https://doi.org/10.1186/1471-2369-15-25CrossRefPubMedPubMedCentral

Lanewala AAA, Shekhani SS (2023) Indirect costs associated with “free” paediatric haemodialysis: experience from Karachi, Pakistan. Indian J Med Ethics VIII:13–23. https://doi.org/10.20529/IJME.2022.006

10.

World Health Organization (n.d.) SDG 3.8.2 Catastrophic health spending (and related indicators). https://www.who.int/data/gho/data/themes/topics/financial-protection. Accessed 17 Mar 2023

11.

Ramachandran R, Jha V (2013) Kidney transplantation is associated with catastrophic out of pocket expenditure in India. PLoS One 8:e67812. https://doi.org/10.1371/journal.pone.0067812CrossRefPubMedPubMedCentral

12.

Dodd R, Palagyi A, Guild L, Jha V, Jan S (2018) The impact of out-of-pocket costs on treatment commencement and adherence in chronic kidney disease: a systematic review. Health Policy Plan 33:1047–1054. https://doi.org/10.1093/HEAPOL/CZY081CrossRefPubMed

13.

Chou KR (2000) Caregiver burden: a concept analysis. J Pediatr Nurs 15:398–407CrossRefPubMed

14.

Oyegbile YO, Brysiewicz P (2017) Exploring caregiver burden experienced by family caregivers of patients with end-stage renal disease in Nigeria. Int J Afr Nurs Sci 7:136–143. https://doi.org/10.1016/j.ijans.2017.11.005CrossRef

15.

Joseph SJ, Bhandari SS, Dutta S, Khatri D, Upadhyay A (2021) Assessing burden and its determinants in caregivers of chronic kidney disease patients undergoing haemodialysis. Open J Psychiatry Allied Sci 12:96–100. https://doi.org/10.5958/2394-2061.2021.00017.3CrossRefPubMed

16.

Alshammari B, Noble H, McAneney H, Alshammari F, O’Halloran P (2021) Factors associated with burden in caregivers of patients with end-stage kidney disease (a systematic review). Healthcare (Switzerland) 9:1212. https://doi.org/10.3390/healthcare9091212CrossRef

17.

Tong A, Lowe A, Sainsbury P, Craig JC (2010) Parental perspectives on caring for a child with chronic kidney disease: an in-depth interview study. Child Care Health Dev 36:549–557. https://doi.org/10.1111/j.1365-2214.2010.01067.xCrossRefPubMed

18.

Wightman A, Zimmerman CT, Neul S, Lepere K, Cedars K, Opel D (2019) Caregiver experience in pediatric dialysis. Pediatrics 143:e20182102. https://doi.org/10.1542/peds.2018-2102CrossRefPubMed

19.

Kiliś-Pstrusińska K, Wasilewska A, Medyńska A, Bałasz-Chmielewska I, Grenda R, Kluska-Jóźwiak A, Leszczyńska B, Olszak-Szot I, Miklaszewska M, Szczepańska M, Tkaczyk M, Urzykowska A, Zachwieja K, Zajączkowska M, Ziółkowska H, Zagożdżon I, Zwolińska D (2013) Psychosocial aspects of children and families of children treated with automated peritoneal dialysis. Pediatr Nephrol 28:2157–2167. https://doi.org/10.1007/s00467-013-2532-6CrossRefPubMedPubMedCentral

20.

Saleem SM, Jan SS (2021) Modified Kuppuswamy socioeconomic scale updated for the year 2021. Indian J Forensic Community Med 8:1–3. https://doi.org/10.18231/j.ijfcm.2021.001CrossRef

21.

Parham R, Jacyna N, Hothi D, Marks S, Holttum S, Camic P (2016) Development of a measure of caregiver burden in paediatric chronic kidney disease: the Paediatric Renal Caregiver Burden Scale. J Health Psychol 21:193–205. https://doi.org/10.1177/1359105314524971CrossRefPubMed

22.

Kari JA, Alzahrany M, El-Deek B, Maimani M, El-Desoky S (2014) Social impact of dialysis on children and their families. Indian J Pediatr 81:1020–1026. https://doi.org/10.1007/s12098-013-1236-zCrossRefPubMed

23.

Tong A, Winkelmayer WC, Craig JC (2014) Qualitative research in CKD: an overview of methods and applications. Am J Kidney Dis 64:338–346. https://doi.org/10.1053/J.AJKD.2014.02.026CrossRefPubMed

24.

von Elm E, Altman DG, Egger M, Pocock SJ, Gotzsche PC, Vandenbroucke JP, STROBE Initiative (2007) Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies. BMJ 335:806–808. https://doi.org/10.1136/bmj.39335.541782.ADCrossRef

25.

Tong A, Sainsbury P, Craig J (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 19:349–357. https://doi.org/10.1093/intqhc/mzm042CrossRefPubMed

26.

Nagarathnam M, Sivakumar V, Latheef S (2019) Burden, coping mechanisms, and quality of life among caregivers of hemodialysis and peritoneal dialysis undergoing and renal transplant patients. Indian J Psychiatry 61:380–388. https://doi.org/10.4103/psychiatry.IndianJPsychiatry_401_18CrossRefPubMedPubMedCentral

27.

Oveyssi J, Manera KE, Baumgart A, Cho Y, Forfang D, Saxena A, Craig JC, Fung SK, Harris D, Johnson DW, Kerr PG, Lee A, Ruiz L, Tong M, Wang AY, Yip T, Tong A, Shen J (2021) Patient and caregiver perspectives on burnout in peritoneal dialysis. Perit Dial Int 41:484–493. https://doi.org/10.1177/0896860820970064CrossRefPubMed

28.

Shah KK, Murtagh FEM, McGeechan K, Crail SM, Burns A, Morton RL (2020) Quality of life among caregivers of people with end-stage kidney disease managed with dialysis or comprehensive conservative care. BMC Nephrol 21:160. https://doi.org/10.1186/s12882-020-01830-9CrossRefPubMedPubMedCentral

29.

El-Abbassy AA, Atia MM, Alam FH (2015) The effectiveness of practical guides on burden’s coping strategies among caregiver of children undergoing hemodialysis. Int J Nurs 2:128–143

30.

Pourghaznein T, Heydari A, Manzari ZS (2018) Iranian mothers’ experiences with children undergoing hemodialysis: a hermeneutic phenomenological study. J Pediatr Nurs 42:e19–e25. https://doi.org/10.1016/j.pedn.2018.06.006CrossRefPubMed

31.

Darwish MM, Hassan SH, Taha SF, Abd El-Megeed HS, Ismail TAM (2020) Family impact and economic burden among caregivers of children with chronic kidney disease in Assiut. Egypt J Egypt Public Health Assoc 95:27. https://doi.org/10.1186/s42506-020-00058-7CrossRefPubMed

32.

Bauer A, Blanchette E, Zimmerman CT, Wightman A (2020) Caregiver burden in pediatric dialysis: application of the Paediatric Renal Caregiver Burden Scale. Pediatr Nephrol 36:3945–3951. https://doi.org/10.1007/s00467-021-05149-xCrossRef

33.

Cagan O, Unsal A, Celik N, Yilmaz AT, Culha I, Eren HK (2018) Care burden of caregivers of hemodialysis patients and related factors. Int J Caring Sci 11:279

34.

Prakongsai P, Palmer N, Uay-Trakul P, Tangcharoensathien V (2009) The implications of benefit package design: the impact on poor Thai households of excluding renal replacement therapy. J Int Dev 21:291–308. https://doi.org/10.1002/JID.1553CrossRef

35.

Bradshaw C, Gracious N, Narayanan R, Narayanan S, Safeer M, Nair G, Murlidharan P, Sundaresan A, Retnaraj Santhi S, Prabhakaran D, Kurella Tamura M, Jha V, Chertow GM, Jeemon P, Anand S (2018) Paying for hemodialysis in Kerala, India: a description of household financial hardship in the context of medical subsidy. Kidney Int Rep 4:390–398. https://doi.org/10.1016/j.ekir.2018.12.007CrossRefPubMedPubMedCentral

36.

Bello A, Sangweni B, Mudi A, Khumalo T, Moonsamy G, Levy C (2018) The financial cost incurred by families of children on long-term dialysis. Perit Dial Int 38:14–17. https://doi.org/10.3747/pdi.2017.00092CrossRefPubMed

37.

Shaikh M, Woodward M, John O, Bassi A, Jan S, Sahay M, Taduri G, Gallagher M, Knight J, Jha V (2018) Utilization, costs, and outcomes for patients receiving publicly funded hemodialysis in India. Kidney Int 94:440–445. https://doi.org/10.1016/J.KINT.2018.03.028CrossRefPubMed

38.

Scholes-Robertson N, Gutman T, Dominello A, Howell M, Craig JC, Wong G, Jaure A (2022) Australian rural caregivers’ experiences in supporting patients with kidney failure to access dialysis and kidney transplantation: a qualitative study. Am J Kidney Dis 80:773-782.e1. https://doi.org/10.1053/j.ajkd.2022.05.015CrossRefPubMed

39.

Jafar TH, Ramakrishnan C, John O, Tewari A, Cobb B, Legido-Quigley H, Sungwon Y, Jha V (2020) Access to CKD care in rural communities of India: a qualitative study exploring the barriers and potential facilitators. BMC Nephrol 21:26. https://doi.org/10.1186/S12882-020-1702-6CrossRefPubMedPubMedCentral

40.

Luyckx VA, Smyth B, Harris DCH (2011) Pecoits-Filho R (2020) Dialysis funding, eligibility, procurement, and protocols in low- and middle-income settings: results from the International Society of Nephrology collection survey. Kidney Int Suppl 10:e10–e18. https://doi.org/10.1016/j.kisu.2019.11.005CrossRef

41.

Wightman A (2020) Caregiver burden in pediatric dialysis. Pediatr Nephrol 35:1575–1583. https://doi.org/10.1007/s00467-019-04332-5CrossRefPubMed

42.

Wiedebusch S, Konrad M, Foppe H, Reichwald-Klugger E, Schaefer F, Schreiber V, Muthny FA (2010) Health-related quality of life, psychosocial strains, and coping in parents of children with chronic renal failure. Pediatr Nephrol 25:1477–1485. https://doi.org/10.1007/s00467-010-1540-zCrossRefPubMed

43.

Ong ZH, Ng CH, Tok PL, Kiew MJX, Huso Y, Shorey S, Ng YPM (2021) Sources of distress experienced by parents of children with chronic kidney disease on Dialysis: a qualitative systematic review. J Pediatr Nurs 57:11–17. https://doi.org/10.1016/j.pedn.2020.10.018CrossRefPubMed

44.

Zhao R, Gu Y, Shen X, Mai X, Zhou C, Zhang Y, Zhai Y, Shen Q, Xu H, Zhou Q (2020) Money matters: a multicenter cross-sectional study of depressive symptoms among the caregivers of children on peritoneal dialysis in Mainland China. BMC Nephrol 1:472. https://doi.org/10.1186/s12882-020-02147-3CrossRef

45.

De Silva I, Evangelidis N, Hanson CS, Manera K, Guha C, Scholes-Robertson N, Craig JC, Johnson D, Cho Y, Viecelli AK, Tong A (2021) Patient and caregiver perspectives on sleep in dialysis. J Sleep Res 30:e13221. https://doi.org/10.1111/jsr.13221CrossRefPubMed

46.

Lima AGT, Sales CCDS, Serafim WFL (2019) Burden, depression and anxiety in primary caregivers of children and adolescents in renal replacement therapy. J Bras Nefrol 41:356–363. https://doi.org/10.1590/2175-8239-JBN-2018-0039CrossRefPubMedPubMedCentral

47.

Sari D, Allenidekania AY (2018) Family experience in treating children with chronic renal failure undergoing hemodialysis therapy. Enferm Clin 28:321–324. https://doi.org/10.1016/S1130-8621(18)30178-5CrossRef

48.

Holt-Lunstad J, Perissinotto C (2023) Social isolation and loneliness as medical issues. N Engl J Med 388:193–195. https://doi.org/10.1056/NEJMp2208029CrossRefPubMed

49.

Gutman T, Kelley A, Scholes-Robertson N, Craig JC, Jesudason S, Tong A (2022) Patient and caregiver experiences and their attitudes about their involvement in research in chronic kidney disease. Clin J Am Soc Nephrol 17:215–227. https://doi.org/10.2215/CJN.05960521CrossRefPubMedPubMedCentral

50.

Abreu IS, Nascimento LC, Lima RAG, Santos CB (2015) Children and adolescents with chronic kidney disease in hemodialysis: perception of professionals. Rev Bras Enferm 68:712–718. https://doi.org/10.1590/0034-7167.2015680604iCrossRef

Titel: Catastrophic healthcare expenditure and caregiver burden in pediatric chronic kidney disease — a mixed methods study from a low resource setting
verfasst von: Soumya Reddy
Nicole Scholes-Robertson
John Michael Raj
Priya Pais
Publikationsdatum: 10.06.2024
Verlag: Springer Berlin Heidelberg
Erschienen in: Pediatric Nephrology / Ausgabe 10/2024
Print ISSN: 0931-041X
Elektronische ISSN: 1432-198X
DOI: https://doi.org/10.1007/s00467-024-06420-7

Breastfeeding and hemolytic uremic syndrome

Research Letter

Daily compared with alternate-day levamisole in pediatric nephrotic syndrome: an open-label randomized controlled study

Original Article

Managing recurrent parvovirus B19-associated anemia after a pediatric kidney transplant

Open Access
Clinical Insights

Kidney transplant outcomes in children with simultaneous versus sequential heart–kidney transplants

Original Article

Assessment of volume status of pediatric hemodialysis patients

Open Access
Original Article

Cost savings of pneumococcal vaccination in children with nephrotic syndrome in a low-middle-income country

Research Letter

Neu im Fachgebiet Pädiatrie

Vorsicht mit Glukokortikoiden bei Glomerulopathie

16.01.2025
Primäre Glomerulonephritiden
Nachrichten

Auch niedrig dosierte Glukokortikoide zur Behandlung einer primären Glomerulopathie lassen offenbar die Infektionsgefahr steigen. In einer US-Studie hing das Risiko vor allem mit der kombinierten Anwendung von Immunsuppressiva zusammen.

Die elektronische Patientenakte kommt: Das sollten Sie jetzt wissen

12.01.2025
Elektronische Patientenakte
Nachrichten

Am 15. Januar geht die „ePA für alle“ zunächst in den Modellregionen an den Start. Doch schon bald soll sie in allen Praxen zum Einsatz kommen. Was ist jetzt zu tun? Was müssen Sie wissen? Wir geben in einem FAQ Antworten auf 21 Fragen.

Medikamente verändern wohl Nährstoffzusammensetzung der Muttermilch

Medikamente in Schwangerschaft und Stillzeit
Nachrichten

Einige Medikamente wie selektive Serotonin-Wiederaufnahmehemmer können offenbar die Makronährstoffzusammensetzung der Muttermilch verändern. Das birgt möglicherweise gesundheitliche Risiken für manche gestillte Kinder.

Kann man Gestationsdiabetes mit oralen Antidiabetika behandeln?

09.01.2025
Gestationsdiabetes
Nachrichten

Der Wunsch, Frauen mit Gestationsdiabetes eine orale Erstlinientherapie anbieten zu können, bleibt auch vorläufig ein Wunsch: Eine orale Stufentherapie hat sich in einer randomisierten Studie nicht als gleichwertig zu einer Insulintherapie erwiesen.

Update Pädiatrie

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert.

Newsletter bestellen

Springer Medizin

Catastrophic healthcare expenditure and caregiver burden in pediatric chronic kidney disease — a mixed methods study from a low resource setting