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Published in: BMC Health Services Research 1/2024

Open Access 01-12-2024 | Stroke | Research

Experience of financial toxicity and coping strategies in young and middle-aged patients with stroke: a qualitative study

Authors: Ling Xu, Qiong Dong, Aiping Jin, Sining Zeng, Kai Wang, Xiaopei Yang, Xiaoping Zhu

Published in: BMC Health Services Research | Issue 1/2024

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Abstract

Background

While financial toxicity (FT) is prevalent in patients with cancer, young and middle-aged patients with stroke are also affected by FT, which can exacerbate their physical and psychological challenges. Understanding the patient’s experience and response measures can further understand the impact of FT on patients with stroke, to help alleviate FT. However, little is known concerning the experience of patients with stroke with FT or their coping strategies. Therefore, this study aimed to describe the experiences of FT in young and middle-aged patients with stroke and their coping strategies.

Methods

A phenomenological method was utilized. Semi-structured interviews were conducted with 21 young and middle-aged stroke patients (aged 18–59) between October 2022 and March 2023. The participants were recruited from a tertiary hospital in Shanghai, China. The research team used NVivo 12.0 software. Giorgi’s phenomenological analysis method was used to analyse the interview data.

Results

The interview results were divided into two categories in terms of patients’ experiences of FT and their coping strategies. Nine subthemes were constructed. The experience category included four subthemes: (1) taking on multifaceted economic pressure, (2) dual choice of treatment, (3) decline in material living standards, and (4) suffering from negative emotions such as anxiety and depression. The coping strategy category included five subthemes: (1) reducing expenses, (2) improving living habits, (3) proactive participation in medical decision-making, (4) making a job position choice, and (5) seeking social support.

Conclusions

FT in young and middle-aged patients with stroke, which affected their physical and mental health, led them to implement strategies for dealing with FT. The Chinese government needs to broaden the reach of health insurance coverage and advance the fairness of healthcare policies. Healthcare professionals must pay active attention to FT in such patients in terms of strengthening their health education and considering their needs and preferences. Patients need to improve their sense of self-efficacy, actively reintegrate into society, and adhere to rehabilitation and treatment. Individuals at a high risk of stroke are recommended to purchase health insurance. Multifaceted efforts are needed to reduce the impact of FT in young and middle-aged patients with stroke.
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Literature
1.
go back to reference GBD 2019 Stroke Collaborators. Global, regional, and national burden of Stroke and its risk factors, 1990–2019: a systematic analysis for the global burden of Disease Study 2019. Lancet Neurol. 2021;20:795–820.CrossRef GBD 2019 Stroke Collaborators. Global, regional, and national burden of Stroke and its risk factors, 1990–2019: a systematic analysis for the global burden of Disease Study 2019. Lancet Neurol. 2021;20:795–820.CrossRef
3.
go back to reference Hathidara MY, Saini V, Malik AM. Stroke in the young: a global update. Curr Neurol Neurosci Rep. 2019;19:91.CrossRefPubMed Hathidara MY, Saini V, Malik AM. Stroke in the young: a global update. Curr Neurol Neurosci Rep. 2019;19:91.CrossRefPubMed
4.
go back to reference Khan SU, Khan MZ, Khan MU, Khan MS, Mamas MA, Rashid M, et al. Clinical and economic burden of Stroke among young, midlife, and older adults in the United States, 2002–2017. Mayo Clin Proc Innov Qual Outcomes. 2021;5:431–41.CrossRefPubMedPubMedCentral Khan SU, Khan MZ, Khan MU, Khan MS, Mamas MA, Rashid M, et al. Clinical and economic burden of Stroke among young, midlife, and older adults in the United States, 2002–2017. Mayo Clin Proc Innov Qual Outcomes. 2021;5:431–41.CrossRefPubMedPubMedCentral
5.
go back to reference Rochmah TN, Rahmawati IT, Dahlui M, Budiarto W, Bilqis N. Economic burden of Stroke Disease: a systematic review. Int J Environ Res Public Health. 2021;18. Rochmah TN, Rahmawati IT, Dahlui M, Budiarto W, Bilqis N. Economic burden of Stroke Disease: a systematic review. Int J Environ Res Public Health. 2021;18.
6.
go back to reference Van Meijeren-Pont W, Tamminga SJ, Goossens PH, Groeneveld IF, Arwert H, Meesters JJL, et al. Societal burden of Stroke rehabilitation: costs and health outcomes after admission to Stroke rehabilitation. J Rehabil Med. 2021;53:jrm00201.CrossRefPubMed Van Meijeren-Pont W, Tamminga SJ, Goossens PH, Groeneveld IF, Arwert H, Meesters JJL, et al. Societal burden of Stroke rehabilitation: costs and health outcomes after admission to Stroke rehabilitation. J Rehabil Med. 2021;53:jrm00201.CrossRefPubMed
7.
go back to reference Maaijwee NA, Rutten-Jacobs LC, Arntz RM, Schaapsmeerders P, Schoonderwaldt HC, van Dijk EJ, et al. Long-term increased risk of unemployment after young Stroke: a long-term follow-up study. Neurology. 2014;83:1132–8.CrossRefPubMed Maaijwee NA, Rutten-Jacobs LC, Arntz RM, Schaapsmeerders P, Schoonderwaldt HC, van Dijk EJ, et al. Long-term increased risk of unemployment after young Stroke: a long-term follow-up study. Neurology. 2014;83:1132–8.CrossRefPubMed
8.
go back to reference Aksenov LI, Fairchild RJ, Hobbs KT, Tejwani R, Wiener JS, Routh JC. Financial toxicity among individuals with spina bifida and their families: a qualitative study and conceptual model. J Pediatr Urol. 2022;18:290e1–8.CrossRef Aksenov LI, Fairchild RJ, Hobbs KT, Tejwani R, Wiener JS, Routh JC. Financial toxicity among individuals with spina bifida and their families: a qualitative study and conceptual model. J Pediatr Urol. 2022;18:290e1–8.CrossRef
9.
go back to reference Zafar SY, Abernethy AP. Financial toxicity, part I: a new name for a growing problem. Oncol (Williston Park). 2013;27:80–1. Zafar SY, Abernethy AP. Financial toxicity, part I: a new name for a growing problem. Oncol (Williston Park). 2013;27:80–1.
10.
go back to reference Carrera PM, Kantarjian HM, Blinder VS. The financial burden and distress of patients with cancer: understanding and stepping-up action on the financial toxicity of cancer treatment. CA Cancer J Clin. 2018;68:153–65.CrossRefPubMedPubMedCentral Carrera PM, Kantarjian HM, Blinder VS. The financial burden and distress of patients with cancer: understanding and stepping-up action on the financial toxicity of cancer treatment. CA Cancer J Clin. 2018;68:153–65.CrossRefPubMedPubMedCentral
11.
go back to reference Chan RJ, Gordon LG, Tan CJ, Chan A, Bradford NK, Yates P, et al. Relationships between financial toxicity and symptom burden in cancer survivors: a systematic review. J Pain Symptom Manag. 2019;57:646–660e1.CrossRef Chan RJ, Gordon LG, Tan CJ, Chan A, Bradford NK, Yates P, et al. Relationships between financial toxicity and symptom burden in cancer survivors: a systematic review. J Pain Symptom Manag. 2019;57:646–660e1.CrossRef
12.
go back to reference Chino F, Peppercorn JM, Rushing C, Kamal AH, Altomare I, Samsa G, et al. Out-of-pocket costs, financial distress, and underinsurance in cancer care. JAMA Oncol. 2017;3:1582–4.CrossRefPubMedPubMedCentral Chino F, Peppercorn JM, Rushing C, Kamal AH, Altomare I, Samsa G, et al. Out-of-pocket costs, financial distress, and underinsurance in cancer care. JAMA Oncol. 2017;3:1582–4.CrossRefPubMedPubMedCentral
13.
go back to reference Bestvina CM, Zullig LL, Rushing C, Chino F, Samsa GP, Altomare I, et al. Patient-oncologist cost communication, financial distress, and medication adherence. J Oncol Pract. 2014;10:162–7.CrossRefPubMedPubMedCentral Bestvina CM, Zullig LL, Rushing C, Chino F, Samsa GP, Altomare I, et al. Patient-oncologist cost communication, financial distress, and medication adherence. J Oncol Pract. 2014;10:162–7.CrossRefPubMedPubMedCentral
14.
go back to reference Elizondo JV, Khera R, Vahidy F, Warraich H, Mahajan S, Blaha M et al. Cost, resource utilization, quality of life, mental health, and financial toxicity among young adults with Stroke in the United States. J Am Coll Cardiol. 2020;75. Elizondo JV, Khera R, Vahidy F, Warraich H, Mahajan S, Blaha M et al. Cost, resource utilization, quality of life, mental health, and financial toxicity among young adults with Stroke in the United States. J Am Coll Cardiol. 2020;75.
15.
go back to reference Patel MR, Zhang G, Heisler M, Song PXK, Piette JD, Shi X, et al. Measurement and validation of the comprehensive score for financial toxicity (COST) in a population with Diabetes. Diabetes Care. 2022;45:2535–43.CrossRefPubMedPubMedCentral Patel MR, Zhang G, Heisler M, Song PXK, Piette JD, Shi X, et al. Measurement and validation of the comprehensive score for financial toxicity (COST) in a population with Diabetes. Diabetes Care. 2022;45:2535–43.CrossRefPubMedPubMedCentral
16.
go back to reference Yiyou Z, Yuan T, Pazileti, Saideng, Ying W. The current situation of financial toxicity among Stroke patients and its influencing factors. Chin Clin Nurs. 2023;15:183–6. Yiyou Z, Yuan T, Pazileti, Saideng, Ying W. The current situation of financial toxicity among Stroke patients and its influencing factors. Chin Clin Nurs. 2023;15:183–6.
17.
go back to reference Su M, Yao N, Liu L, Cheng J, Sun X, Yue H, et al. Older cancer survivors living with financial hardship in China: a qualitative study of family perspectives. Psychooncology. 2022;31:661–70.CrossRefPubMed Su M, Yao N, Liu L, Cheng J, Sun X, Yue H, et al. Older cancer survivors living with financial hardship in China: a qualitative study of family perspectives. Psychooncology. 2022;31:661–70.CrossRefPubMed
19.
go back to reference Luo C. Re-partitioning population age group and its implications. Popul Res. 2017;41:16–25. Luo C. Re-partitioning population age group and its implications. Popul Res. 2017;41:16–25.
20.
go back to reference Saunders B, Sim J, Kingstone T, Baker S, Waterfield J, Bartlam B, et al. Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant. 2018;52:1893–907.CrossRefPubMed Saunders B, Sim J, Kingstone T, Baker S, Waterfield J, Bartlam B, et al. Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant. 2018;52:1893–907.CrossRefPubMed
21.
go back to reference Schröder SL, Schumann N, Fink A, Richter M. Coping mechanisms for financial toxicity: a qualitative study of cancer patients’ experiences in Germany. Support Care Cancer. 2020;28:1131–9.CrossRefPubMed Schröder SL, Schumann N, Fink A, Richter M. Coping mechanisms for financial toxicity: a qualitative study of cancer patients’ experiences in Germany. Support Care Cancer. 2020;28:1131–9.CrossRefPubMed
22.
go back to reference Giorgi A. The theory, practice, and evaluation of the phenomenological method as a qualitative research procedure [J]. J Phenomenological Psychol. 1997;28(2):235–60.CrossRef Giorgi A. The theory, practice, and evaluation of the phenomenological method as a qualitative research procedure [J]. J Phenomenological Psychol. 1997;28(2):235–60.CrossRef
23.
go back to reference Pucciarelli G, Rebora P, Arisido MW, Ausili D, Simeone S, Vellone E, et al. Direct cost related to Stroke: a longitudinal analysis of survivors after discharge from a Rehabilitation Hospital. J Cardiovasc Nurs. 2020;35:86–94.CrossRefPubMed Pucciarelli G, Rebora P, Arisido MW, Ausili D, Simeone S, Vellone E, et al. Direct cost related to Stroke: a longitudinal analysis of survivors after discharge from a Rehabilitation Hospital. J Cardiovasc Nurs. 2020;35:86–94.CrossRefPubMed
24.
go back to reference Wang X, Shang S, Yang H, Ai H, Wang Y, Chang S, et al. Associations of psychological distress with positive psychological variables and activities of daily living among Stroke patients: a cross-sectional study. BMC Psychiatry. 2019;19:381.CrossRefPubMedPubMedCentral Wang X, Shang S, Yang H, Ai H, Wang Y, Chang S, et al. Associations of psychological distress with positive psychological variables and activities of daily living among Stroke patients: a cross-sectional study. BMC Psychiatry. 2019;19:381.CrossRefPubMedPubMedCentral
25.
go back to reference Chang X, Wang K, Wang Y, Tu H, Gong G, Zhang H. Medication literacy in Chinese patients with Stroke and associated factors: a cross-sectional study. Int J Environ Res Public Health. 2022;20. Chang X, Wang K, Wang Y, Tu H, Gong G, Zhang H. Medication literacy in Chinese patients with Stroke and associated factors: a cross-sectional study. Int J Environ Res Public Health. 2022;20.
26.
go back to reference Khoshbakht Pishkhani M, Dalvandi A, Ebadi A, Hosseini M. Factors affecting adherence to rehabilitation in Iranian Stroke patients: a qualitative study. J Vasc Nurs. 2019;37:264–71.CrossRefPubMed Khoshbakht Pishkhani M, Dalvandi A, Ebadi A, Hosseini M. Factors affecting adherence to rehabilitation in Iranian Stroke patients: a qualitative study. J Vasc Nurs. 2019;37:264–71.CrossRefPubMed
27.
go back to reference Paprocka-Borowicz M, Wiatr M, Ciałowicz M, Borowicz W, Kaczmarek A, Marques A et al. Influence of physical activity and socio-economic status on depression and anxiety symptoms in patients after Stroke. Int J Environ Res Public Health. 2021;18. Paprocka-Borowicz M, Wiatr M, Ciałowicz M, Borowicz W, Kaczmarek A, Marques A et al. Influence of physical activity and socio-economic status on depression and anxiety symptoms in patients after Stroke. Int J Environ Res Public Health. 2021;18.
28.
go back to reference Gyawali P, Wong D, Hordacre B, Ong LK, English C. Editorial: stress, mood, and fatigue: tackling invisible obstacles in Stroke rehabilitation and recovery. Front Neurol. 2022;13:1121667.CrossRefPubMed Gyawali P, Wong D, Hordacre B, Ong LK, English C. Editorial: stress, mood, and fatigue: tackling invisible obstacles in Stroke rehabilitation and recovery. Front Neurol. 2022;13:1121667.CrossRefPubMed
29.
go back to reference Harshfield EL, Georgakis MK, Malik R, Dichgans M, Markus HS. Modifiable lifestyle factors and risk of Stroke: a mendelian randomization analysis [J]. Stroke. 2021;52:931–6.CrossRefPubMedPubMedCentral Harshfield EL, Georgakis MK, Malik R, Dichgans M, Markus HS. Modifiable lifestyle factors and risk of Stroke: a mendelian randomization analysis [J]. Stroke. 2021;52:931–6.CrossRefPubMedPubMedCentral
30.
go back to reference Rao BR, Dickert NW, Morris AA, Speight CD, Smith GH, Shore S, et al. Heart Failure and shared decision-making: patients open to medication-related cost discussions. Circ Heart Fail. 2020;13:e007094.CrossRefPubMedPubMedCentral Rao BR, Dickert NW, Morris AA, Speight CD, Smith GH, Shore S, et al. Heart Failure and shared decision-making: patients open to medication-related cost discussions. Circ Heart Fail. 2020;13:e007094.CrossRefPubMedPubMedCentral
31.
go back to reference Slavin SD, Khera R, Zafar SY, Nasir K, Warraich HJ. Financial burden, distress, and toxicity in Cardiovascular Disease. Am Heart J. 2021;238:75–84.CrossRefPubMed Slavin SD, Khera R, Zafar SY, Nasir K, Warraich HJ. Financial burden, distress, and toxicity in Cardiovascular Disease. Am Heart J. 2021;238:75–84.CrossRefPubMed
32.
go back to reference Carlson MA, Fradgley EA, Bridge P, Taylor J, Morris S, Coutts E, et al. The dynamic relationship between cancer and employment-related financial toxicity: an in-depth qualitative study of 21 Australian cancer survivor experiences and preferences for support. Support Care Cancer. 2022;30:3093–103.CrossRefPubMed Carlson MA, Fradgley EA, Bridge P, Taylor J, Morris S, Coutts E, et al. The dynamic relationship between cancer and employment-related financial toxicity: an in-depth qualitative study of 21 Australian cancer survivor experiences and preferences for support. Support Care Cancer. 2022;30:3093–103.CrossRefPubMed
33.
go back to reference Ashley KD, Lee LT, Heaton K. Return to work among Stroke survivors. Workplace Health Saf. 2019;67:87–94.CrossRefPubMed Ashley KD, Lee LT, Heaton K. Return to work among Stroke survivors. Workplace Health Saf. 2019;67:87–94.CrossRefPubMed
34.
go back to reference Wang H, Si Y, Wu G, Wen J, Yang M. Work situation of patients with Stroke who have returned to work: a scoping review protocol. BMJ Open. 2022;12:e058061.CrossRefPubMedPubMedCentral Wang H, Si Y, Wu G, Wen J, Yang M. Work situation of patients with Stroke who have returned to work: a scoping review protocol. BMJ Open. 2022;12:e058061.CrossRefPubMedPubMedCentral
35.
go back to reference Lagerveld SE, Blonk RWB, Brenninkmeijer V, Schaufeli WB. Return to work among employees with mental health problems: development and validation of a self-efficacy questionnaire. Work Stress. 2010;24:359–75.CrossRef Lagerveld SE, Blonk RWB, Brenninkmeijer V, Schaufeli WB. Return to work among employees with mental health problems: development and validation of a self-efficacy questionnaire. Work Stress. 2010;24:359–75.CrossRef
36.
go back to reference Jeon SH, Stepner M, Rotermann M, Fransoo R, Sanmartin C, Scales DC, et al. Effects of cardiovascular health shocks on spouses’ work and earnings: a national study. Med Care. 2020;58:128–36.CrossRefPubMed Jeon SH, Stepner M, Rotermann M, Fransoo R, Sanmartin C, Scales DC, et al. Effects of cardiovascular health shocks on spouses’ work and earnings: a national study. Med Care. 2020;58:128–36.CrossRefPubMed
37.
go back to reference Liu HY, Liu QH, Li ZR, Deng CS, Zhang XP, Wan LH. The cognitive appraisal path of Stroke knowledge, coping traits, family functioning and stigma among Stroke patients: a moderated parallel mediation model. J Clin Nurs. 2023. Liu HY, Liu QH, Li ZR, Deng CS, Zhang XP, Wan LH. The cognitive appraisal path of Stroke knowledge, coping traits, family functioning and stigma among Stroke patients: a moderated parallel mediation model. J Clin Nurs. 2023.
38.
go back to reference Yang Y, Nicholas S, Maitland E, Huang Z, Chen X, Ma Y, et al. An equity evaluation in Stroke inpatients in regard to medical costs in China: a nationwide study. BMC Health Serv Res. 2021;21:425.CrossRefPubMedPubMedCentral Yang Y, Nicholas S, Maitland E, Huang Z, Chen X, Ma Y, et al. An equity evaluation in Stroke inpatients in regard to medical costs in China: a nationwide study. BMC Health Serv Res. 2021;21:425.CrossRefPubMedPubMedCentral
40.
go back to reference Van Mastrigt G, Van Heugten C, Visser-Meily A, Bremmers L, Evers S. Estimating the burden of Stroke: two-year societal costs and generic health-related quality of life of the Restore4Stroke cohort. Int J Environ Res Public Health. 2022;19. Van Mastrigt G, Van Heugten C, Visser-Meily A, Bremmers L, Evers S. Estimating the burden of Stroke: two-year societal costs and generic health-related quality of life of the Restore4Stroke cohort. Int J Environ Res Public Health. 2022;19.
41.
go back to reference Nasir K, Khera R. Financial toxicity of acute Cardiovascular Disease in India: a dive beyond the tip of an iceberg. JAMA Netw Open. 2019;2:e193839.CrossRefPubMed Nasir K, Khera R. Financial toxicity of acute Cardiovascular Disease in India: a dive beyond the tip of an iceberg. JAMA Netw Open. 2019;2:e193839.CrossRefPubMed
42.
go back to reference Arsanjani R, Khera N. Financial toxicity in cancer and Cardiovascular Disease: a threat to access and quality of care. JACC Cardiooncol. 2021;3:247–9.CrossRefPubMedPubMedCentral Arsanjani R, Khera N. Financial toxicity in cancer and Cardiovascular Disease: a threat to access and quality of care. JACC Cardiooncol. 2021;3:247–9.CrossRefPubMedPubMedCentral
43.
go back to reference Yong M, Xianjun X, Jinghu L, Yunyun F. Effect of health insurance on direct hospitalisation costs for in-patients with ischaemic Stroke in China. Aust Health Rev. 2018;42:39–44.CrossRefPubMed Yong M, Xianjun X, Jinghu L, Yunyun F. Effect of health insurance on direct hospitalisation costs for in-patients with ischaemic Stroke in China. Aust Health Rev. 2018;42:39–44.CrossRefPubMed
44.
Metadata
Title
Experience of financial toxicity and coping strategies in young and middle-aged patients with stroke: a qualitative study
Authors
Ling Xu
Qiong Dong
Aiping Jin
Sining Zeng
Kai Wang
Xiaopei Yang
Xiaoping Zhu
Publication date
01-12-2024
Publisher
BioMed Central
Keyword
Stroke
Published in
BMC Health Services Research / Issue 1/2024
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-023-10457-z

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