Understanding haemophilia caregiver burden: does appraisal buffer the impact of haemophilia on caregivers over time?

References

• Al, L. D., & Ahmad, M. M. (2018). The implementation of mindfulness-based interventions and educational interventions to support family caregivers of patients with cancer: A systematic review. Perspectives in Psychiatric Care, 54(3), 441–452.
   PubMed Web of Science ®Google Scholar
• Barusch, A. S., & Spaid, W. M. (1989). Gender differences in caregiving: Why do wives report greater burden? The Gerontologist, 29(5), 667–676. https://doi.org/10.1093/geront/29.5.667
   PubMed Web of Science ®Google Scholar
• Brehaut, J. C., Kohen, D. E., Garner, R. E., Miller, A. R., Lach, L. M., Klassen, A. F., & Rosenbaum, P. L. (2009). Health among caregivers of children with health problems: Findings from a Canadian population-based study. American Journal of Public Health, 99(7), 1254–1262. https://doi.org/10.2105/AJPH.2007.129817
   PubMed Web of Science ®Google Scholar
• Canning, R. D., Harris, E. S., & Kelleher, K. J. (1996). Factors predicting distress among caregivers to children with chronic medical conditions. Journal of Pediatric Psychology, 21(5), 735–749. https://doi.org/10.1093/jpepsy/21.5.735
   PubMed Web of Science ®Google Scholar
• Cohen, J. (1992). A power primer. Psychological Bulletin, 112(1), 155–159. https://doi.org/10.1037/0033-2909.112.1.155
   PubMed Web of Science ®Google Scholar
• DeKoven, M., Karkare, S., Lee, W. C., Kelley, L. A., Cooper, D. L., Pham, H., Powers, J., & Wisniewski, T. (2014). Impact of haemophilia with inhibitors on caregiver burden in the United States. [Research Support, Non-U.S. Gov’t]. Haemophilia, 20(6), 822–830. https://www.ncbi.nlm.nih.gov/pubmed/25273645 https://doi.org/10.1111/hae.12501
   PubMed Web of Science ®Google Scholar
• Dillman, D. A., Smyth, J. D., & Christian, L. M. (2014). Internet, phone, mail, and mixed-mode surveys: The tailored design method (4th ed.). John Wiley & Sons, Inc.
   Google Scholar
• Faul, F. (2014). G*Power (Version 3.1.9.2). Universitat Kiel.
   Google Scholar
• Giovannetti, E. R., Wolff, J. L., Frick, K. D., & Boult, C. (2009). Construct validity of the work productivity and activity impairment questionnaire across informal caregivers of chronically ill older patients. Value in Health, 12(6), 1011–1017. https://www.ncbi.nlm.nih.gov/pubmed/19402853 https://doi.org/10.1111/j.1524-4733.2009.00542.x
   PubMed Web of Science ®Google Scholar
• Hemophilia facts. (2016). https://www.cdc.gov/ncbddd/hemophilia/facts.html.
   Google Scholar
• Holstein, K., von Mackensen, S., Bokemeyer, C., & Langer, F. (2016). The impact of social factors on outcomes in patients with bleeding disorders. Haemophilia, 22(1), 46–53. https://doi.org/10.1111/hae.12760
   PubMed Web of Science ®Google Scholar
• IBM. (2019). SPSS statistics for windows (Version 26). IBM Corp.
   Google Scholar
• Javalkar, K., Rak, E., Phillips, A., Haberman, C., Ferris, M., & Van Tilburg, M. (2017). Predictors of caregiver burden among mothers of children with chronic conditions. Children, 4(5), 39. https://doi.org/10.3390/children4050039
   PubMedGoogle Scholar
• Khair, K., Klukowska, A., Myrin Westesson, L., Kavakli, K., Escuriola, C., Uitslager, N., Santoro, C., Holland, M., & von Mackensen, S. (2019). The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study). Haemophilia, 25(3), 416–423. https://doi.org/10.1111/hae.13736
   PubMed Web of Science ®Google Scholar
• Khair, K., & Von Mackensen, S. (2017). Caregiver burden in haemophilia: Results from a single UK centre. The Journal of Haemophilia Practice, 4(1), 40–48. https://doi.org/10.17225/jhp00094
   Google Scholar
• Kim, Y., Loscalzo, M. J., Wellisch, D. K., & Spillers, R. L. (2006). Gender differences in caregiving stress among caregivers of cancer survivors. Psycho-oncology, 15(12), 1086–1092. https://doi.org/10.1002/pon.1049
   PubMed Web of Science ®Google Scholar
• Kramer, B. J., & Kipnis, S. (1995). Eldercare and work-role conflict: Toward an understanding of gender differences in caregiver burden. The Gerontologist, 35(3), 340–348. https://doi.org/10.1093/geront/35.3.340
   PubMed Web of Science ®Google Scholar
• Lach, L. M., Kohen, D. E., Garner, R. E., Brehaut, J. C., Miller, A. R., Klassen, A. F., & Rosenbaum, P. L. (2009). The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders. Disability and Rehabilitation, 31(9), 741–752. https://doi.org/10.1080/08916930802354948
   PubMed Web of Science ®Google Scholar
• Miller, B., & Cafasso, L. (1992). Gender differences in caregiving: fact or artifact? The Gerontologist, 32(4), 498–507. https://doi.org/10.1093/geront/32.4.498
   PubMed Web of Science ®Google Scholar
• Miodrag, N., & Hodapp, R. M. (2010). Chronic stress and health among parents of children with intellectual and developmental disabilities. Current Opinion in Psychiatry, 23(5), 407–411. https://doi.org/10.1097/YCO.0b013e32833a8796
   PubMed Web of Science ®Google Scholar
• Moyers, T. B., Rowell, L. N., Manuel, J. K., Ernst, D. & Houck, J. M. (2016). The motivational interviewing treatment integrity code (MITI 4): Rationale, preliminary reliability and validity. Journal of Substance Abuse Treatment, 65, 36–42.
   Google Scholar
• Murphy, N. A., Christian, B., Caplin, D. A., & Young, P. C. (2007). The health of caregivers for children with disabilities: Caregiver perspectives. Child: Care, Health and Development, 33(2), 180–187. https://doi.org/10.1111/j.1365-2214.2006.00644.x
   PubMed Web of Science ®Google Scholar
• Muthén, L. K., & Muthén, B. O. (1998). Mplus user’s guide (7th ed.) Muthén & Muthén.
   Google Scholar
• Norman, G. R., Sloan, J. A., & Wyrwich, K. W. (2003). Interpretation of changes in health-related quality of life: the remarkable universality of half a standard deviation. Medical Care, 41(5), 582–592. https://doi.org/10.1097/01.MLR.0000062554.74615.4C
   PubMed Web of Science ®Google Scholar
• Piersol, C. V., Canton, K., Connor, S. E., Giller, I., Lipman, S., & Sager, S. (2017). Effectiveness of interventions for caregivers of people with Alzheimer’s disease and related major neurocognitive disorders: A systematic review. American Journal of Occupational Therapy, 71(5), 7105180020p1–7105180020p7105180010. https://doi.org/10.5014/ajot.2017.027581
   PubMed Web of Science ®Google Scholar
• Pinquart, M., & Sörensen, S. (2006). Gender differences in caregiver stressors, social resources, and health: An updated meta-analysis. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 61(1), P33–P45. https://doi.org/10.1093/geronb/61.1.P33
   PubMed Web of Science ®Google Scholar
• Pollak, E., Mühlan, H., Von Mackensen, S., Bullinger, M., & Haemo-QoL Group. (2006). The Haemo‐QoL index: Developing a short measure for health‐related quality of life assessment in children and adolescents with haemophilia. Haemophilia, 12(4), 384–392. https://doi.org/10.1111/j.1365-2516.2006.01292.x
   PubMed Web of Science ®Google Scholar
• Rapkin, B. D., Garcia, I., Michael, W., Zhang, J., & Schwartz, C. E. (2018). Development of a practical outcome measure to account for individual differences and temporal changes in quality-of-life appraisal: The brief appraisal inventory. Quality of Life Research, 27(3), 823–833. https://doi.org/10.1007/s11136-017-1722-2
   PubMed Web of Science ®Google Scholar
• Rapkin, B. D., & Schwartz, C. E. (2004). Toward a theoretical model of quality-of-life appraisal: Implications of findings from studies of response shift. Health and Quality of Life Outcomes, 2(1), 14. PM:15023229 https://doi.org/10.1186/1477-7525-2-14
   PubMedGoogle Scholar
• Rapkin, B. D., & Schwartz, C. E. (2016). Distilling the essence of appraisal: A mixed methods study of people with multiple sclerosis. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 25(4), 793–805. https://doi.org/10.1007/s11136-015-1119-z
   PubMed Web of Science ®Google Scholar
• Rapkin, B. D., & Schwartz, C. E. (2019). Advancing quality-of-life research by deepening our understanding of response shift: A unifying theory of appraisal. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 28(10), 2623–2630. https://doi.org/10.1007/s11136-019-02248-z
   PubMed Web of Science ®Google Scholar
• Sangha, O., Stucki, G., Liang, M. H., Fossel, A. H., & Katz, J. N. (2003). The self‐administered comorbidity questionnaire: A new method to assess comorbidity for clinical and health services research. Arthritis and Rheumatism, 49(2), 156–163. https://doi.org/10.1002/art.10993
   PubMed Web of Science ®Google Scholar
• Schwartz, C. E., & Eldar-Lissai, A. (2015). Developing a measure of hemophilia caregiver impact. Quality of Life Research, 24(Supplement 1), 187.
   Google Scholar
• Schwartz, C. E., Finkelstein, J. A., & Rapkin, B. D. (2017). Appraisal assessment in patient-reported outcome research: Methods for uncovering the personal context and meaning of quality of life. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 26(3), 545–554. https://doi.org/10.1007/s11136-016-1476-2
   PubMed Web of Science ®Google Scholar
• Schwartz, C. E., Michael, W., & Rapkin, B. D. (2017). Resilience to health challenges is related to different ways of thinking: Mediators of physical and emotional quality of life in a heterogeneous rare-disease cohort. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 26(11), 3075–3088. https://doi.org/10.1007/s11136-017-1633-2
   PubMed Web of Science ®Google Scholar
• Schwartz, C. E., Powell, V. E., & Eldar-Lissai, A. (2017). Measuring hemophilia caregiver burden: Validation of the hemophilia caregiver impact measure. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 26(9), 2551–2562. https://doi.org/10.1007/s11136-017-1572-y
   PubMed Web of Science ®Google Scholar
• Schwartz, C. E., Powell, V. E., & Rapkin, B. D. (2017). When global rating of change contradicts observed change: Examining appraisal processes underlying paradoxical responses over time. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 26(4), 847–857. https://doi.org/10.1007/s11136-016-1414-3
   PubMed Web of Science ®Google Scholar
• Schwartz, C. E., Powell, V. E., Su, J., Zhang, J., & Eldar-Lissai, A. (2018). The impact of extended half-life versus conventional factor products on hemophilia caregiver burden. Quality of Life Research, 27(5), 1335–1345. https://doi.org/10.1007/s11136-018-1792-9
   PubMed Web of Science ®Google Scholar
• Schwartz, C. E., Quaranto, B. R., Rapkin, B. D., Healy, B. C., Vollmer, T., & Sprangers, M. A. G. (2014). Fluctuations in appraisal over time in the context of stable versus non-stable health. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 23(1), 9–19. https://doi.org/10.1007/s11136-013-0471-0
   PubMed Web of Science ®Google Scholar
• Schwartz, C. E., & Rapkin, B. D. (2004). Reconsidering the psychometrics of quality of life assessment in light of response shift and appraisal. Health and Quality of Life Outcomes, 2, 16.
   PubMedGoogle Scholar
• Schwartz, C. E., Stark, R. B., Stucky, B. D., Michael, W., & Rapkin, B. D. (2020). Positive emotions despite substantial burden: The alchemy of haemophilia caregiving. Haemophilia: The Official Journal of the World Federation of Hemophilia. 26, 86–96.
   PubMed Web of Science ®Google Scholar
• Schwartz, C. E., Zhang, J., Rapkin, B. D., & Finkelstein, J. A. (2019). Reconsidering the minimally important difference: Evidence of instability over time and across groups. The Spine Journal, 19(4), 726–734. https://doi.org/10.1016/j.spinee.2018.09.010
   PubMed Web of Science ®Google Scholar
• Schwartz, C. E., Zhang, J., & Su, J. (2019). Longitudinal validity of the hemophilia caregiver impact measure. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 28(7), 1979–1987. https://doi.org/10.1007/s11136-019-02168-y
   PubMed Web of Science ®Google Scholar
• StataCorp. (2017). Stata statistical software: Release 15. StataCorp LLC.
   Google Scholar
• Teschendorf, B., Schwartz, C., Ferrans, C. E., O'Mara, A., Novotny, P., & Sloan, J. (2007). Caregiver role stress: When families become providers. Cancer Control: Journal of the Moffitt Cancer Center, 14(2), 183–189. https://doi.org/10.1177/107327480701400212
   PubMedGoogle Scholar
• Triemstra, M., Van Der Ploeg, H., Smit, C., & Rosendaal, F. (1999). Hemophilia from the partners’ perspective: Burden and impact on their lives. Psychology & Health, 14(1), 97–116. https://doi.org/10.1080/08870449908407317
   Web of Science ®Google Scholar
• Varni, J. W. (2014). Scaling and scoring of the pediatric quality of life inventory™ PedsQL™. Mapi Research Trust.
   Google Scholar
• Varni, J. W., Sherman, S. A., Burwinkle, T. M., Dickinson, P. E., & Dixon, P. (2004). The PedsQL family impact module: preliminary reliability and validity. Health and Quality of Life Outcomes, 2, 55. http://www.ncbi.nlm.nih.gov/pubmed/15450120 https://doi.org/10.1186/1477-7525-2-55
   PubMedGoogle Scholar
• Varni, J. W., Thissen, D., Stucky, B. D., Liu, Y., Gorder, H., Irwin, D. E., DeWitt, E. M., Lai, J.-S., Amtmann, D., & DeWalt, D. A. (2012). PROMIS® parent proxy report scales: an item response theory analysis of the parent proxy report item banks. Quality of Life Research, 21(7), 1223–1240. https://doi.org/10.1007/s11136-011-0025-2
   PubMed Web of Science ®Google Scholar
• Von Mackensen, S., Bullinger, M., & Haemo-QoL Group. (2004). Development and testing of an instrument to assess the quality of life of children with haemophilia in Europe (Haemo‐QoL). Haemophilia: The Official Journal of the World Federation of Hemophilia, 10(s1), 17–25. https://doi.org/10.1111/j.1355-0691.2004.00875.x
   PubMedGoogle Scholar