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Financial Burden after Allogeneic Hematopoietic Cell Transplantation: A Qualitative Analysis from Patient Perspectives. ARTICLE in BONE MARROW TRANSPLANTATION · JUNE 2015 Impact Factor: 3.47 · DOI: 10.1038/bmt.2015.128

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Available from: Wonsun Sunny Kim Retrieved on: 23 June 2015

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Title: Financial Burden after Allogeneic Hematopoietic Cell Transplantation: A Qualitative

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Analysis from Patient Perspective

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Authors: Wonsun Kim1, Julie McNulty1, Yu-Hui Chang2, Mary Weise3, Shahrukh Hashmi4,

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Sikander Ailawadhi5, Nandita Khera3

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Biostatistics, Mayo Clinic, Phoenix; 3Division of Hematology/ Oncology, Mayo Clinic, Phoenix;

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Oncology, Mayo Clinic, Jacksonville

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Corresponding author: Nandita Khera MD MPH

College of Nursing & Health Innovation, Arizona State University, Phoenix; 2Division of

Division of Hematology/ Oncology, Mayo Clinic, Rochester; 5Division of Hematology/

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Email: [email protected]

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Telephone number: 480-342-3047

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Fax number: 480-342-2085

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Running Title: Patient perspective on financial burden after HCT

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Conflict of Interest: The authors declare that they have no conflict of interest.

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Hematopoietic Cell Transplantation (HCT) is an intensive, medically complicated and

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potentially life-threatening therapy with a prolonged trajectory of recovery. Similar to financial

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toxicity in cancer, adverse financial consequences of HCT are emerging as an important issue,

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and may be associated with poor quality of life and increased distress in HCT survivors. 1,

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perception of what he or she considers a burden. Qualitative research methods can be used to

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collect information about patients’ perceptions of reasons for their financial distress and to ask

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them what tangible support would benefit them. This can eventually help to design intervention

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studies.

Financial burden is difficult to assess quantitatively as it is influenced by an individual’s

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In our pilot study of evaluating financial burden after HCT, we used a qualitative

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research methodology to reach a deeper and richer understanding of patients’ perceptions about

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financial difficulties as a result of HCT. A 25-item self-administered questionnaire was mailed to

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482 study patients who had received an allogeneic HCT between January 2006 and June 2012 at

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the three Mayo Clinic sites: Rochester (MN), Phoenix (AZ) and Jacksonville (FL) and were

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alive, with a current address available. The study was approved by the Institutional Review

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Board at Mayo Clinic. The survey methodology and quantitative results have been described in

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detail previously.1 The questionnaire included an open-ended question: “How has transplant

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made an impact on your financial situation? Please let us know if any particular information

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could have been provided to you before the transplant that would have helped you plan your

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finances better for your post-transplant care”. The textual data obtained from this question from

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46% of the 268 respondents (n=124) was analyzed with a constant comparative analysis. There

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were no significant differences in socio-demographic characteristics of this subset and the

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respondents who did not provide narrative comments. (Table 1) Two qualitative researchers and 2

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one clinician familiar with qualitative analysis techniques coded the transcripts generated and

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arrived at the codes after mutual discussion. Additionally, qualitative reliability and validity

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criteria suggested by Creswell and Plano Clark were utilized to ensure data triangulation and

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inter-coder agreement. 3

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Table 2 includes some representative responses for the seven themes that emerged from the

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constant comparative analysis of 124 patient comments. Participants shared vivid accounts of

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devastating financial loss after HCT such as that of their home/ business, need to declare bankruptcy

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or loss of retirement income, a decrease in household income, and depleted savings. Dichotomies

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such as “painful but worth it” and “grateful to be alive, yet HCT created a financial strain” were

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apparent in some patient expressions. Participants worried about lifetime caps on insurance,

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changes in self/ spouses’ health insurance, health insurance coverage running out, and concerns

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about paying all the bills or not being able to afford everything. Prolonged inability to go back to

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work because of long-term complications in the face of continued medical expenses increased the

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financial burden for some people.

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A quarter of the commenters described resources such as savings, retirement funds, self or

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spouses insurance and financial support, supportive employer with good benefits, temporary

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housing coverage, fundraisers and donations from family and friends that assisted with their

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finances. While having good insurance was supportive for some patients, problems with health

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insurance created stress for others. Navigation of the healthcare insurance system was described as

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challenging by some of the commenters. Impact on caregivers was evident by concerns about

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employment and the financial situation of the whole household as a result of patients’ HCT. It was

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apparent from the comments that though the primary focus of patients was on treatment and

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physical and emotional well-being as compared to financial well-being at the time of transplant,

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there was a desire to have a frank discussion about possible financial consequences.

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As a highly complex medical treatment for various hematological malignancies, HCT is

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associated with multiple psychosocial issues during recovery, and financial burden is clearly one

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of them. Our qualitative data suggest that employment, health insurance and government

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policies may be important factors with contrasting impact on the degree of financial burden for

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patients and families. They could exacerbate the burden for some, but ameliorate it for others

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similar to what has been reported by other investigators in this area.2, 4-6 In addition, patients

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reflected on the need for financial planning prior to HCT because of ongoing medical

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complications adding to the financial burden, consistent with the approach recommended by

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Majhail et al. 7 Patients recognized navigating the system and lack of knowledge about

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employment or insurance policies as a big challenge. They appreciated the involvement of social

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workers and other providers who performed pre HCT financial screening and counselling and

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assisted them with financial issues during the course of their HCT.

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Unlike other medical conditions, HCT is usually undertaken for a life-threatening disease, which

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for most people decreases the priority of financial concerns during the initial decision-making.

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This dilemma was well-reflected in one of the patient comments:

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I believe everything was explained thoroughly and explicitly. But I don’t think that when you face a

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last option to have a decent quality of life that you process it. You hear, understand and

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acknowledge it but only when you are on the other side of transplant, you allow your mind and heart

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to process that it may cost everything you own. When hope reappears, you process it because then

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you have a value to balance it against.

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Our analysis has limitations. Using the question and answer format only from the

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respondents who gave narrative comments did not allow for further in-depth exploration of the

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perspectives of the participants and may have resulted in selection of a specific subset precluding

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the capture of diversity of perceptions. However, the commenters and non-commenters were

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quite comparable in terms of their sociodemographic profile. This is also being addressed by our

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group in a future project which includes brief semi-structured interviews with HCT survivors

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trying to assess financial stressors after HCT. The survey was sent to patients who were alive at

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the time and therefore, may be an underestimate of financial burden as burden experienced by

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families of patients who died maybe higher with end-of-life care that they receive. We also

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acknowledge that this was a single institution study (albeit form three distinct geographic sites)

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from the USA and results might vary depending on payer system and government policies in

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other countries.

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Notwithstanding these limitations, our data provides critical information on inter-related

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factors associated with financial burden from patients’ point of view and suggests the need for

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inquiry and intervention before and after transplant to identify at-risk patients. This would likely

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improve psychosocial outcomes including quality of life and overall patient satisfaction. 8 Our

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findings reinforce the need for revising the policies regarding employment and benefits or

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policies related to it and improving the quality of insurance coverage delivery since these are

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integrally related to financial burden for most of the patients. Future research should aim to

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develop measures that can be incorporated in regular assessments to evaluate financial impact on

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patients and to help identify the vulnerable groups.9 There is also need for developing

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interventions such as utilizing a patient navigator to help with employment/ insurance related

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issues or a financial planner to help patients understand the financial impact better and plan to

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avoid catastrophic financial consequences for themselves and their family.

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Khera N CY, Hashmi S, Slack J, Beebe T, Roy V, Noel P, Fauble V,, Sproat L TJ, Leis JF, Mikhael J,. Financial Burden in Recipients of Allogeneic Hematopoietic Cell Transplantation. Biology of Blood and Marrow Transplantation 2014. 20: 1375-1381.

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Hamilton JG, Wu LM, Austin JE, Valdimarsdottir H, Basmajian K, Vu A et al. Economic survivorship stress is associated with poor health-related quality of life among distressed survivors of hematopoietic stem cell transplantation. Psycho-Oncology 2013; 22(4): 911-21.

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Creswell J PC, V. . Designing and conducting mixed methods research, 2nd Edition edn Sage Publications: Thousand Oaks, CA, 2011.

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Jagsi R, Pottow JAE, Griffith KA, Bradley C, Hamilton AS, Graff J et al. Long-Term Financial Burden of Breast Cancer: Experiences of a Diverse Cohort of Survivors Identified Through PopulationBased Registries. Journal of Clinical Oncology 2014.

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Medical Costs and Productivity Losses of Cancer Survivors — United States, 2008–2011. In: CDC, (ed).

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Gordon EJ, Conti D. The quality of health insurance service delivery for kidney transplant recipients: a patient perspective. Am J Transplant 2010; 10(10): 2208-14.

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Majhail NS, Rizzo JD, Hahn T, Lee SJ, McCarthy PL, Ammi M et al. Pilot study of patient and caregiver out-of-pocket costs of allogeneic hematopoietic cell transplantation. Bone marrow transplantation 2012.

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Chino F, Peppercorn J, Taylor DH, Lu Y, Samsa G, Abernethy AP et al. Self-Reported Financial Burden and Satisfaction With Care Among Patients With Cancer. Oncologist 2014; 19(4): 414420.

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Khera N. Reporting and Grading Financial Toxicity. Journal of clinical oncology : official journal of the American Society of Clinical Oncology 2014.

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Financial burden after allogeneic hematopoietic cell transplantation: a qualitative analysis from the patient's perspective.

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