Johansen, K. L., Chertow, G. M., Foley, R. N., Gilbertson, D. T., Herzog, C. A., Ishani, A., Israni, A. K., Ku, E., Kurella Tamura, M., Li, S., Li, S., Liu, J., Obrador, G. T., O’Hare, A. M., Peng, Y., Powe, N. R., Roetker, N. S., St Peter, W. L., Abbott, K. C., … Wetmore, J. B. (2021). US Renal Data System 2020 Annual Data Report: Epidemiology of kidney disease in the United States. American Journal of Kidney Diseases, 77(4 Suppl 1), A7–A8. https://doi.org/10.1053/j.ajkd.2021.01.002

Article  PubMed  PubMed Central  Google Scholar 

Rokhman, M. R., Wardhani, Y., Partiningrum, D. L., Purwanto, B. D., Hidayati, I. R., Idha, A., Thobari, J. A., Postma, M. J., Boersma, C., & van der Schans, J. (2023). Psychometric properties of kidney disease quality of life-36 (KDQOL-36) in dialysis patients in Indonesia. Quality of Life Research, 32(1), 247–258. https://doi.org/10.1007/s11136-022-03236-6

Article  PubMed  Google Scholar 

Griva, K., Goh, C. S., Kang, W. C. A., Yu, Z. L., Chan, M. C., Wu, S. Y., Krishnasamy, T., & Foo, M. (2016). Quality of life and emotional distress in patients and burden in caregivers: A comparison between assisted peritoneal dialysis and self-care peritoneal dialysis. Quality of Life Research, 25(2), 373–384. https://doi.org/10.1007/s11136-015-1074-8

Article  CAS  PubMed  Google Scholar 

Gilbertson, E. L., Krishnasamy, R., Foote, C., Kennard, A. L., Jardine, M. J., & Gray, N. A. (2019). Burden of care and quality of life among caregivers for adults receiving maintenance dialysis: A systematic review. American Journal of Kidney Diseases, 73, 332–343. https://doi.org/10.1053/j.ajkd.2018.09.006

Article  PubMed  Google Scholar 

Sousa, H., Ribeiro, O., Paúl, C., Costa, E., Frontini, R., Miranda, V., Oliveira, J., Ribeiro, F., & Figueiredo, D. (2021). “Together We Stand”: A Pilot study exploring the feasibility, acceptability, and preliminary effects of a family-based psychoeducational intervention for patients on hemodialysis and their family caregivers. Healthcare, 9(11), 1585. https://doi.org/10.3390/healthcare9111585

Article  PubMed  PubMed Central  Google Scholar 

Bostwick, D., Wolf, S., Samsa, G., Bull, J., Taylor, D. H., Jr., Johnson, K. S., & Kamal, A. H. (2017). Comparing the palliative care needs of those with cancer to those with common non-cancer serious illness. Journal of Pain and Symptom Management, 53, 1079-1084.e1. https://doi.org/10.1016/j.jpainsymman.2017.02.014

Article  PubMed  Google Scholar 

Drapeau, A., Marchand, A., & Beaulieu-Prévost, D. (2012). Epidemiology of psychological distress. In L. Labate (Ed.), Mental illnesses - Understanding, prediction, and control (pp. 105–134). InTech: Open Science.

Google Scholar 

Ridner, S. H. (2004). Psychological distress: Concept analysis. Journal of Advanced Nursing, 45, 536–545. https://doi.org/10.1046/j.1365-2648.2003.02938.x

Article  PubMed  Google Scholar 

Ankuda, C. K., Maust, D. T., Kabeto, M. U., McCammon, R. J., Langa, K. M., & Levine, D. A. (2017). Association between spousal caregiver well-being and care recipient healthcare expenditures. Journal of the American Geriatrics Society, 65, 2220–2226. https://doi.org/10.1111/jgs.15039

Article  PubMed  PubMed Central  Google Scholar 

Hovadick, A. C., Jardim, V. R., Paúl, C., Pagano, A., Reis, I., & Torres, H. (2021). Interventions to improve the well-being of family caregivers of patients on hemodialysis and peritoneal dialysis: A systematic review. PeerJ, 9, 1–18. https://doi.org/10.7717/peerj.11713

Article  Google Scholar 

Narva, A. S., Norton, J. M., & Boulware, L. E. (2016). Educating patients about CKD: The path to self-management and patient-centered care. Clinical Journal of the American Society of Nephrology, 11, 694–703. https://doi.org/10.2215/CJN.07680715

Article  CAS  PubMed  Google Scholar 

Campbell, R., Ju, A., King, M. T., & Rutherford, C. (2022). Perceived benefits and limitations of using patient-reported outcome measures in clinical practice with individual patients: A systematic review of qualitative studies. Quality of Life Research, 31(6), 1597–1620. https://doi.org/10.1007/s11136-021-03003-z

Article  PubMed  Google Scholar 

Boots, L. M., Wolfs, C. A., Verhey, F. R., Kempen, G. I., & Vugt, M. E. (2015). Qualitative study on needs and wishes of early-stage dementia caregivers: The paradox between needing and accepting help. International Psychogeriatrics, 27, 927–936. https://doi.org/10.1017/S1041610214002804

Article  PubMed  Google Scholar 

Joling, K. J., Smit, F., van Marwijk, H. W., van der Horst, H. E., Scheltens, P., Schulz, R., & van Hout, H. P. (2012). Identifying target groups for the prevention of depression among caregivers of dementia patients. International Psychogeriatrics, 24(2), 298–306. https://doi.org/10.1017/S1041610211001633

Article  PubMed  Google Scholar 

Combes, G., Damery, S., Sein, K., Allen, K., Nicholas, J., & Baharani, J. (2019). Distress in patients with end-stage renal disease: Staff perceptions of barriers to the identification of mild-moderate distress and the provision of emotional support. PLoS ONE, 14, e0225269. https://doi.org/10.1371/journal.pone.0225269

Article  CAS  PubMed  PubMed Central  Google Scholar 

Hejazi, S. S., Hosseini, M., Ebadi, A., & Alavi Majd, H. (2022). Development and psychometric properties evaluation of caregiver burden questionnaire in family caregivers of hemodialysis patients. BMC Nursing, 21(1), 246. https://doi.org/10.1186/s12912-022-01025-7

Article  PubMed  PubMed Central  Google Scholar 

Sousa, H., Oliveira, J., Figueiredo, D., & Ribeiro, O. (2021). The clinical utility of the Distress Thermometer in non-oncological contexts: A scoping review. Journal of Clinical Nursing, 30, 2131–2150. https://doi.org/10.1111/jocn.15698

Article  PubMed  Google Scholar 

Smart, A. (2006). A multi-dimensional model of clinical utility. International Journal for Quality in Health Care, 18(5), 377–382. https://doi.org/10.1093/intqhc/mzl034

Article  PubMed  Google Scholar 

Donovan, K. A., Grassi, L., McGinty, H. L., & Jacobsen, P. B. (2014). Validation of the distress thermometer worldwide: State of the science. Psycho-oncology, 23(3), 241–250. https://doi.org/10.1002/pon.3430

Article  PubMed  Google Scholar 

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. https://doi.org/10.1191/1478088706qp063oa

Article  Google Scholar 

Sousa, H., Ribeiro, O., Christensen, A. J., & Figueiredo, D. (2023). Designing family-based interventions in kidney failure: The perspectives of the triad ’patients on haemodialysis/family caregivers/healthcare professionals. British Journal of Health Psychology, 28(3), 672–689. https://doi.org/10.1111/bjhp.12647

Article  PubMed  Google Scholar 

Polit, D. F., & Beck, C. T. (2006). The content validity index: Are you sure you know what’s being reported? Critique and recommendations. Research in Nursing & Health, 29, 489–497. https://doi.org/10.1002/nur.20147

Article  Google Scholar 

Boateng, G. O., Neilands, T. B., Frongillo, E. A., Melgar-Quiñonez, H. R., & Young, S. L. (2018). Best practices for developing and validating scales for health, social, and behavioral research: A primer. Frontiers in Public Health, 6, 149. https://doi.org/10.3389/fpubh.2018.00149

Article  PubMed  PubMed Central  Google Scholar 

Terwee, C. B., Prinsen, C. A. C., Chiarotto, A., Westerman, M. J., Patrick, D. L., Alonso, J., Bouter, L. M., de Vet, H. C. W., & Mokkink, L. B. (2018). COSMIN methodology for evaluating the content validity of patient-reported outcome measures: A Delphi study. Quality of Life Research, 27(5), 1159–1170. https://doi.org/10.1007/s11136-018-1829-0

Article  CAS  PubMed  PubMed Central  Google Scholar 

Mokkink, L. B., de Vet, H. C. W., Prinsen, C. A. C., Patrick, D. L., Alonso, J., Bouter, L. M., & Terwee, C. B. (2018). COSMIN Risk of Bias checklist for systematic reviews of Patient-Reported Outcome Measures. Quality of Life Research, 27(5), 1171–1179. https://doi.org/10.1007/s11136-017-1765-4

Article  CAS  PubMed  Google Scholar 

Hajian-Tilaki, K. (2014). Sample size estimation in diagnostic test studies of biomedical informatics. Journal of Biomedical Informatics, 48, 193–204. https://doi.org/10.1016/j.jbi.2014.02.013

Article  PubMed  Google Scholar 

Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67, 361–370. https://doi.org/10.1111/j.1600-0447.1983.tb09716.x

Article  CAS  PubMed  Google Scholar 

Pais-Ribeiro, J., Silva, I., Ferreira, T., Martins, A., Meneses, R., & Baltar, M. (2007). Validation study of a Portuguese version of the Hospital Anxiety and Depression Scale. Psychology, Health & Medicine, 12, 225–237. https://doi.org/10.1080/13548500500524088

Article  CAS  Google Scholar 

Canavarro, M. C., Serra, A. V., Simões, M. R., Rijo, D., Pereira, M., Gameiro, S., Quartilho, M. J., Quintais, L., Carona, C., & Paredes, T. (2009). Development and psychometric properties of the World Health Organization Quality of Life Assessment Instrument (WHOQOL-100) in Portugal. International Journal of Behavioral Medicine, 16(2), 116–124. https://doi.org/10.1007/s12529-008-9024-2

Article  PubMed  Google Scholar 

Zarit, S., Todd, P., & Zarit, J. (1986). Subjective burden of husbands and wives as caregivers: A longitudinal study. The Gerontologist, 26, 260–266. https://doi.org/10.1093/geront/26.3.260

Article  CAS  PubMed  Google Scholar 

Sequeira, C. (2010). Adaptação e validação da Escala de Sobrecarga do Cuidador de Zarit. Referência, 2, 9–16. Retrieved September 4, 2023, from http://www.index-f.com/referencia/2010pdf/12-0916.pdf

Perkins, N. J., & Schisterman, E. F. (2006). The inconsistency of “optimal” cutpoints obtained using two criteria based on the receiver operating characteristic curve. American Journal of Epidemiology, 163, 670–675. https://doi.org/10.1093/aje/kwj063

Article  PubMed  Google Scholar 

Mitchell, A. J. (2011). Sensitivity × PPV is a recognized test called the clinical utility index (CUI+). European Journal of Epidemiology, 26, 251–252. https://doi.org/10.1007/s10654-011-9561-x

Article  PubMed  Google Scholar 

Fluss, R., Faraggi, D., & Reiser, B. (2005). Estimation of the Youden Index and its associated cutoff point. Biometrical Journal, 47, 458–472. https://doi.org/10.1002/bimj.200410135

Article  MathSciNet  PubMed  Google Scholar 

Beaton, D. E., Bombardier, C., Guillemin, F., & Ferraz, M. B. (2000). Guidelines for the process of cross-cultural adaptation of self-report me