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Cited by 17Palliative Care and End-of-Life IssuesPalliative and Oncologic CareEconomic and Financial Impacts of Cancer

Association Between Financial Distress with Patient and Caregiver Outcomes in Home-Based Palliative Care: A Secondary Analysis of a Clinical Trial

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Wang, Susan E., Haupt, Eric C., Nau, Claudia, Werch, Henry, McMullen, Carmit, Lynn, Joanne, Shen, Ernest, Mularski, Richard A. +2 more·2022·Journal of General Internal Medicine
DOI 10.1007/s11606-021-07286-3PMC PMC8782701
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Abstract

Background Serious illness often causes financial hardship for patients and families. Home-based palliative care (HBPC) may partly address this. Objective Describe the prevalence and characteristics of patients and family caregivers with high financial distress at HBPC admission and examine the relationship between financial distress and patient and caregiver outcomes. Design, settings, and participants Data for this cohort study were drawn from a pragmatic comparative-effectiveness trial testing two models of HBPC in Kaiser Permanente. We included 779 patients and 438 caregivers from January 2019 to January 2020. Measurements Financial distress at admission to HBPC was measured using a global question (0-10-point scale: none=0; mild=1-5; moderate/severe=6+). Patient- (Edmonton Symptom Assessment Scale, distress thermometer, PROMIS-10) and caregiver (Preparedness for Caregiving, Zarit-12 Burden, PROMIS-10)-reported outcomes were measured at baseline and 1 month. Hospital utilization was captured using electronic medical records and claims. Mixed-effects adjusted models assessed survey measures and a proportional hazard competing risk model assessed hospital utilization. Results Half of the patients reported some level of financial distress with younger patients more likely to have moderate/severe financial distress. Patients with moderate/severe financial distress at HBPC admission reported worse symptoms, general distress, and quality of life (QoL), and caregivers reported worse preparedness, burden, and QoL (all, p<.001). Compared to patients with no financial distress, moderate/severe financial distress patients had more social work contacts, improved symptom burden at 1 month (ESAS total score: -4.39; 95% CI: -7.61, -1.17; p<.01), and no increase in hospital-based utilization (adjusted hazard ratio: 1.11; 95% CI: 0.87-1.40; p=.41); their caregivers had improved PROMIS-10 mental scores (+2.68; 95% CI: 0.20, 5.16; p=.03). No other group differences were evident in the caregiver preparedness, burden, and physical QoL change scores. Conclusion These findings highlight the importance and need for routine assessments of financial distress and for provision of social supports required to help families receiving palliative care services.

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  • Los cuidadores que tuvieron mayor apoyo por parte de trabajo social mejoraron las puntuaciones mentales.

    “además los cuidadores que tuvieron mayor apoyo por parte de trabajo social mejoraron las puntuaciones mentales (S.Wang et al., 2022).”

    From Sobrecarga de trabajo en cuidadores de pacientes en cuidados paliativos oncológicos: Una revisión bibliográfica (2023) · cites this paper as S.Wang et al., 2022

    En Resultados (sin página indicada), los cuidadores de pacientes con dificultades financieras moderadas o graves presentaron una mejora relativa en las puntuaciones mentales PROMIS-10. Otro apartado de Resultados señala que esos pacientes tuvieron más contactos con trabajo social, pero el estudio no establece que los cuidadores recibieran mayor apoyo de trabajo social ni que ese apoyo explicara la mejora. (LLM, conf=0.86)

    Experimental — accuracy not yet measured

  • En un medio con dificultades económicas moderadas a graves, los cuidadores tienen peor calidad de vida, carga y preparación, y los pacientes presentan peores dificultades generales, calidad de vida y síntomas (p < 0,001).

    “en un medio con dificultades económicas moderadas a graves los cuidadores tuvieron una peor CdV, CdC y preparación, al igual que los pacientes quienes presentaban peores dificultades generales, CdV y síntomas (p < 0,001)”

    From Sobrecarga de trabajo en cuidadores de pacientes en cuidados paliativos oncológicos: Una revisión bibliográfica (2023) · cites this paper as S.Wang et al., 2022

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Research works printed but not linked: 34

  1. [1]Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, Engineering, and Medicine; Schulz R, Eden J. editors. Families caring for an aging America. Washington (DC): National Academies Press (US); 2016 Nov 8. Available from: https://www.ncbi.nlm.nih.gov/books/NBK396401/, 10.17226/23606. 27905704 · DOI
  2. [2]Wolff JL Spillman BC Freedman VA Kasper JD A national profile of family and unpaid caregivers who assist older adults with health care activities JAMA Intern Med 2016 176 3 372 379 10.1001/jamainternmed.2015.7664 26882031 PMC4802361 · DOI
  3. [3]Gardiner C Brereton L Frey R Wilkinson-Meyers L Gott M Exploring the financial impact of caring for family members receiving palliative and end-of-life care: A systematic review of the literature Palliat Med 2014 28 5 375 390 10.1177/0269216313510588 24201134 · DOI
  4. [4]Altice CK, Banegas MP, Tucker-Seeley RD, Yabroff KR. Financial hardships experienced by cancer survivors: A systematic review. J Natl Cancer Inst 2017;109(2). PMC6075571 27754926
  5. [5]Essue BM Beaton A Hull C Living with economic hardship at the end of life BMJ Support Palliat Care 2015 5 2 129 137 10.1136/bmjspcare-2013-000460 24644185 · DOI
  6. [6]Gill TM, Zang EX, Murphy TE, et al. Association between neighborhood disadvantage and functional well-being in community-living older persons JAMA Intern Med 2021. PMC8383163 34424276
  7. [7]Chokshi DA Income, poverty, and health inequality JAMA. 2018 319 13 1312 1313 10.1001/jama.2018.2521 29614168 · DOI
  8. [8]Chetty R Stepner M Abraham S The association between income and life expectancy in the United States, 2001-2014 JAMA. 2016 315 16 1750 1766 10.1001/jama.2016.4226 27063997 PMC4866586 · DOI · Paper page
  9. [9]Han X Zhao J Zheng Z de Moor JS Virgo KS Yabroff KR Medical financial hardship intensity and financial sacrifice associated with cancer in the United States Cancer Epidemiol, Biomarkers Prev: A publ Ame Assoc Cancer Res, cosponsored Ame Soc Prev Oncol 2020 29 2 308 317 10.1158/1055-9965.EPI-19-0460 PMC7007367 31941708 · DOI
  10. [10]Yabroff KR Dowling EC Guy GP Jr Financial hardship associated with cancer in the United States: findings from a population-based sample of adult cancer survivors J clin oncol: Official J Ame Soc Clin Oncol 2016 34 3 259 267 10.1200/JCO.2015.62.0468 PMC4872019 26644532 · DOI
  11. [11]Zheng Z Jemal A Han X Medical financial hardship among cancer survivors in the United States Cancer. 2019 125 10 1737 1747 10.1002/cncr.31913 30663039 · DOI
  12. [12]Kale HP Carroll NV Self-reported financial burden of cancer care and its effect on physical and mental health-related quality of life among US cancer survivors Cancer. 2016 122 8 283 289 10.1002/cncr.29808 26991528 · DOI
  13. [13]Fenn KM Evans SB McCorkle R Impact of financial burden of cancer on survivors’ quality of life J oncol prac 2014 10 5 332 338 10.1200/JOP.2013.001322 24865220 · DOI
  14. [14]Chan RJ Gordon LG Tan CJ Relationships between financial toxicity and symptom burden in cancer survivors: A systematic review J Pain Symptom Manag 2019 57 3 646 660.e641 10.1016/j.jpainsymman.2018.12.003 30550833 · DOI
  15. [15]Ramsey SD Bansal A Fedorenko CR Financial insolvency as a risk factor for early mortality among patients with cancer J clin oncol: Official J Ame Soc Clin Oncol 2016 34 9 980 986 10.1200/JCO.2015.64.6620 PMC4933128 26811521 · DOI
  16. [16]Emanuel EJ Fairclough DL Slutsman J Emanuel LL Understanding economic and other burdens of terminal illness: The experience of patients and their caregivers Ann Intern Med 2000 132 6 451 459 10.7326/0003-4819-132-6-200003210-00005 10733444 · DOI
  17. [17]Totten AM, White-Chu EF, Wasson N, et al. Home-Based Primary Care Interventions [Internet]. Rockville (MD): Agency for Healthcare Research and Quality (US); 2016 Feb. (Comparative Effectiveness Reviews, No. 164.) Available from: https://www.ncbi.nlm.nih.gov/books/NBK356253/.
  18. [18]Leff B Lasher A Ritchie CS Can home-based primary care drive integration of medical and social care for complex older adults? J Am Geriatr Soc 2019 67 7 1333 1335 10.1111/jgs.15969 31074839 · DOI
  19. [20]Wang SE Liu IA Lee JS End-of-life care in patients exposed to home-based palliative care vs hospice only J Am Geriatr Soc 2019 67 6 1226 1233 10.1111/jgs.15844 30830695 · DOI
  20. [21]Nguyen HQ Mularski RA Edwards PE Protocol for a noninferiority comparative effectiveness trial of home-based palliative care (HomePal) J Palliat Med 2019 22 S1 20 33 10.1089/jpm.2019.0116 31486724 · DOI
  21. [22]Nguyen HQ, McMullen C, Haupt EC, Wang SE, Werch H, Edwards PE, Andres GM, Reinke L, Mittman BS, Shen E, Mularski RA. Findings and lessons learnt from early termination of a pragmatic comparative effectiveness trial of video consultations in home-based palliative care. BMJ Support Palliat Care. 2020 Oct 13:bmjspcare-2020-002553. 10.1136/bmjspcare-2020-002553. 33051309 · DOI · Paper page
  22. [23]Brumley RD Enguidanos S Cherin DA Effectiveness of a home-based palliative care program for end-of-life J Palliat Med 2003 6 5 715 724 10.1089/109662103322515220 14622451 · DOI
  23. [24]Delgado-Guay MO Chisholm G Williams J Frisbee-Hume S Ferguson AO Bruera E Frequency, intensity, and correlates of spiritual pain in advanced cancer patients assessed in a supportive/palliative care clinic Palliat Support Care 2016 14 4 341 348 10.1017/S147895151500108X 26481034 · DOI
  24. [25]Bruera E Kuehn N Miller MJ Selmser P Mcacmillan K The Edmonton Symptom Assessment System (ESAS): A simple method for the assessment of palliative care patients J Palliat Care 1991 7 6 9 10.1177/082585979100700202 1714502 · DOI
  25. [26]Hays RD Bjorner JB Revicki DA Spritzer KL Cella D Development of physical and mental health summary scores from the Patient-Reported Outcomes Measurement Information System (PROMIS) global items Qual Life Res 2009 18 7 873 880 10.1007/s11136-009-9496-9 19543809 PMC2724630 · DOI · Paper page
  26. [28]Archbold PG Stewart BJ Greenlick MR Harvath T Mutuality and preparedness as predictors of caregiver role strain Res Nurs Health 1990 13 6 375 384 10.1002/nur.4770130605 2270302 · DOI
  27. [29]Schumacher KL Stewart BJ Archbold PG Mutuality and preparedness moderate the effects of caregiving demand on cancer family caregiver outcomes Nurs Res 2007 56 6 425 433 10.1097/01.NNR.0000299852.75300.03 18004189 · DOI
  28. [31]Fine JP Gray RJ A proportional hazards model for the subdistribution of a competing risk J Am Stat Assoc 1999 94 496 509 10.1080/01621459.1999.10474144 · DOI · Paper page
  29. [32]Hui D Shamieh O Paiva CE Minimal clinically important difference in the physical, emotional, and total symptom distress scores of the Edmonton Symptom Assessment System J Pain Symptom Manag 2016 51 2 262 269 10.1016/j.jpainsymman.2015.10.004 PMC4733575 26482223 · DOI
  30. [34]Kavalieratos D Corbelli J Zhang D Association between palliative care and patient and caregiver outcomes: A systematic review and meta-analysis JAMA. 2016 316 20 2104 2114 10.1001/jama.2016.16840 27893131 PMC5226373 · DOI
  31. [35]Barbaret C Delgado-Guay MO Sanchez S Inequalities in financial distress, symptoms, and quality of life among patients with advanced cancer in France and the U.S Oncologist 2019 24 8 1121 1127 10.1634/theoncologist.2018-0353 30877191 PMC6693692 · DOI
  32. [36]Barbaret C Brosse C Rhondali W Financial distress in patients with advanced cancer PLoS One 2017 12 5 e0176470 10.1371/journal.pone.0176470 28545063 PMC5436643 · DOI
  33. [37]Covinsky KE Goldman L Cook EF The impact of serious illness on patients’ families. SUPPORT Investigators. Study to understand prognoses and preferences for outcomes and risks of treatment JAMA. 1994 272 23 1839 1844 10.1001/jama.1994.03520230049037 7990218 · DOI
  34. [39]Tucker-Seeley RD Abel GA Uno H Prigerson H Financial hardship and the intensity of medical care received near death Psychooncology. 2015 24 5 572 578 10.1002/pon.3624 25052138 PMC4305037 · DOI

Cited by

Sorted by citations

Authors
Wang, S. E., Haupt, E. C., Nau, C., Werch, H., McMullen, C., Lynn, J., Shen, E., Mularski, R. A., Nguyen, H. Q., & the HomePal Research Group
Affiliations
Kaiser Permanente (US)
Corresponding author
Nguyen, Huong Q.
ORCID
Venue
Journal of General Internal Medicine
Publisher
Springer Science and Business Media LLC
Published
2022-01-22
Volume
37
Issue
12
Pages
3029-3037
ISSN
  • 0884-8734 (ISSN-L)
  • 1525-1497
DOI
10.1007/s11606-021-07286-3
PMC
PMC8782701
OpenAlex
W4207025630
Cited by
17
References
3
Citations by year
2026: 2 · 2025: 7 · 2024: 5 · 2023: 2 · 2022: 1
FWCI
3.31
Type
journal article
Language
en
Open access
Licence
Locations
  • Journal of General Internal Medicine (publishedVersion)
  • PubMed Central (publishedVersion)
  • PubMed (publishedVersion)
Funders
Patient-Centered Outcomes Research Institute (PLC-1609-36108)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Economic and Financial Impacts of Cancer
Keywords
financial distress, home-based palliative care, family caregivers, caregiver burden, caregiver preparedness, quality of life, symptom burden, hospital utilization, social work support, serious illness, patient-reported outcomes, competing risk analysis, Kaiser Permanente, PROMIS-10, Edmonton Symptom Assessment System
MeSH terms
Humans, Palliative Care, Quality of Life, Surveys and Questionnaires, Cohort Studies, Caregivers

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