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Published in: BMC Medical Research Methodology 1/2017

Open Access 01-12-2017 | Research article

Measuring the burden of treatment for chronic disease: implications of a scoping review of the literature

Authors: Adem Sav, Asiyeh Salehi, Frances S. Mair, Sara S. McMillan

Published in: BMC Medical Research Methodology | Issue 1/2017

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Abstract

Background

Although there has been growing research on the burden of treatment, the current state of evidence on measuring this concept is unknown. This scoping review aimed to provide an overview of the current state of knowledge as well as clear recommendations for future research, within the context of chronic disease.

Methods

Four health-based databases, Scopus, CINAHL, Medline, and PsychInfo, were comprehensively searched for peer-reviewed articles published between the periods of 2000–2016. Titles and abstracts were independently read by two authors. All discrepancies between the authors were resolved by a third author. Data was extracted using a standardized proforma and a comparison analysis was used in order to explore the key treatment burden measures and categorize them into three groups.

Results

Database searching identified 1458 potential papers. After removal of duplications, and irrelevant articles by title, 1102 abstracts remained. An additional 22 papers were added via snowball searching. In the end, 101 full papers were included in the review. A large number of the studies involved quantitative measures and conceptualizations of treatment burden (n = 64; 63.4%), and were conducted in North America (n = 49; 48.5%). There was significant variation in how the treatment burden experienced by those with chronic disease was operationalized and measured.

Conclusion

Despite significant work, there is still much ground to cover to comprehensively measure treatment burden for chronic disease. Greater qualitative focus, more research with cultural and minority populations, a larger emphasis on longitudinal studies and the consideration of the potential effects of “identity” on treatment burden, should be considered.
Literature
1.
go back to reference World Health Organization: Noncommunicable diseases. In: Media Centre. Edited by Organization WH. Geneva, Switzerland: World Health Organization; 2017. World Health Organization: Noncommunicable diseases. In: Media Centre. Edited by Organization WH. Geneva, Switzerland: World Health Organization; 2017.
2.
go back to reference Gallacher K, May CR, Montori VM, Mair FS. Understanding patients’ experiences of treatment burden in chronic heart failure using normalization process theory. Ann Fam Med. 2011;9(3):235–43. 239pPubMedPubMedCentralCrossRef Gallacher K, May CR, Montori VM, Mair FS. Understanding patients’ experiences of treatment burden in chronic heart failure using normalization process theory. Ann Fam Med. 2011;9(3):235–43. 239pPubMedPubMedCentralCrossRef
3.
go back to reference Sav A, Whitty JA, McMillan SS, Kendall E, Kelly F, King MA, Wheeler AJ. Treatment burden and chronic illness: who is at most risk. Patient - Patient-Centered Outcomes Res. 2016;9(6):559–69.CrossRef Sav A, Whitty JA, McMillan SS, Kendall E, Kelly F, King MA, Wheeler AJ. Treatment burden and chronic illness: who is at most risk. Patient - Patient-Centered Outcomes Res. 2016;9(6):559–69.CrossRef
4.
go back to reference Barnett K, Mercer SW, Norbury M, Watt G, Wyke S, Guthrie B. Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. Lancet. 380(9836):37–43. Barnett K, Mercer SW, Norbury M, Watt G, Wyke S, Guthrie B. Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. Lancet. 380(9836):37–43.
5.
go back to reference Mair FS, May CR. Thinking about the burden of treatment. BMJ : British Medical Journal. 2014;349 Mair FS, May CR. Thinking about the burden of treatment. BMJ : British Medical Journal. 2014;349
6.
go back to reference Tran VT, Montori VM, Eton DT, Baruch D, Falissard B, Ravaud P. Development and description of measurement properties of an instrument to assess treatment burden among patients with multiple chronic conditions. BMC Med. 2012;10 Tran VT, Montori VM, Eton DT, Baruch D, Falissard B, Ravaud P. Development and description of measurement properties of an instrument to assess treatment burden among patients with multiple chronic conditions. BMC Med. 2012;10
7.
go back to reference May C, Montori VM, Mair FS. We need minimally disruptive medicine. BMJ. 2009;339 May C, Montori VM, Mair FS. We need minimally disruptive medicine. BMJ. 2009;339
8.
go back to reference Sav A, King MA, Whitty JA, Kendall E, McMillan SS, Kelly F, Hunter B, Wheeler AJ. Burden of treatment for chronic illness: a concept analysis and review of the literature. Health Expectations. 2015;18(3):312–24. 313pPubMedCrossRef Sav A, King MA, Whitty JA, Kendall E, McMillan SS, Kelly F, Hunter B, Wheeler AJ. Burden of treatment for chronic illness: a concept analysis and review of the literature. Health Expectations. 2015;18(3):312–24. 313pPubMedCrossRef
9.
go back to reference Tran VT, Harrington M, Montori VM, Barnes C, Wicks P, Ravaud P. Adaptation and validation of the Treatment Burden Questionnaire (TBQ) in English using an internet platform. BMC Med. 2014;12(1):109. Tran VT, Harrington M, Montori VM, Barnes C, Wicks P, Ravaud P. Adaptation and validation of the Treatment Burden Questionnaire (TBQ) in English using an internet platform. BMC Med. 2014;12(1):109.
10.
go back to reference Demain S, Gonçalves AC, Areia C, Oliveira R, Marcos AJ, Marques A, Parmar R, Hunt K. Living with, managing and minimising treatment burden in long term conditions: A systematic review of qualitative research. PLoS One. 2015;10(5):e0125457. Demain S, Gonçalves AC, Areia C, Oliveira R, Marcos AJ, Marques A, Parmar R, Hunt K. Living with, managing and minimising treatment burden in long term conditions: A systematic review of qualitative research. PLoS One. 2015;10(5):e0125457.
11.
go back to reference Sav A, Kendall E, McMillan SS, Kelly F, Whitty JA, King MA, Wheeler AJ. You say treatment, I say hard work: treatment burden among people with chronic illness and their carers in Australia. Health Soc Care Community. 2013;21(6):665–74. 610pPubMed Sav A, Kendall E, McMillan SS, Kelly F, Whitty JA, King MA, Wheeler AJ. You say treatment, I say hard work: treatment burden among people with chronic illness and their carers in Australia. Health Soc Care Community. 2013;21(6):665–74. 610pPubMed
12.
go back to reference Colquhoun HL, Levac D, O'Brien KK, Straus S, Tricco AC, Perrier L, Kastner M, Moher D. Scoping reviews: time for clarity in definition, methods, and reporting. J Clin Epidemiol. 2014;67(12):1291–4.PubMedCrossRef Colquhoun HL, Levac D, O'Brien KK, Straus S, Tricco AC, Perrier L, Kastner M, Moher D. Scoping reviews: time for clarity in definition, methods, and reporting. J Clin Epidemiol. 2014;67(12):1291–4.PubMedCrossRef
13.
go back to reference Tricco AC, Lillie E, Zarin W, O’Brien K, Colquhoun H, Kastner M, Levac D, Ng C, Sharpe JP, Wilson K, et al. A scoping review on the conduct and reporting of scoping reviews. BMC Med Res Methodol. 2016;16:15.PubMedPubMedCentralCrossRef Tricco AC, Lillie E, Zarin W, O’Brien K, Colquhoun H, Kastner M, Levac D, Ng C, Sharpe JP, Wilson K, et al. A scoping review on the conduct and reporting of scoping reviews. BMC Med Res Methodol. 2016;16:15.PubMedPubMedCentralCrossRef
14.
go back to reference H. A, L. OM: Scoping studies: towards a methodological framework. Int J Soc Res Methodol 2005, 8(1):19–32. H. A, L. OM: Scoping studies: towards a methodological framework. Int J Soc Res Methodol 2005, 8(1):19–32.
15.
go back to reference Davis K, Drey N, Gould D. What are scoping studies? A review of the nursing literature. Int J Nurs Stud. 2009;46(10):1386–400.PubMedCrossRef Davis K, Drey N, Gould D. What are scoping studies? A review of the nursing literature. Int J Nurs Stud. 2009;46(10):1386–400.PubMedCrossRef
17.
go back to reference Singh A, Harford J, Schuch HS, Watt RG, Peres MA. Theoretical basis and explanation for the relationship between area-level social inequalities and population oral health outcomes – a scoping review. SSM - Population Health. 2016;2:451–62.CrossRef Singh A, Harford J, Schuch HS, Watt RG, Peres MA. Theoretical basis and explanation for the relationship between area-level social inequalities and population oral health outcomes – a scoping review. SSM - Population Health. 2016;2:451–62.CrossRef
18.
go back to reference Vijan S, Sussman JB, Yudkin JS, Hayward RA. Effect of patients' risks and preferences on health gains with plasma glucose level lowering in type 2 diabetes mellitus. JAMA Intern Med. 2014;174(8):1227–34.PubMedPubMedCentralCrossRef Vijan S, Sussman JB, Yudkin JS, Hayward RA. Effect of patients' risks and preferences on health gains with plasma glucose level lowering in type 2 diabetes mellitus. JAMA Intern Med. 2014;174(8):1227–34.PubMedPubMedCentralCrossRef
19.
go back to reference Brod M, Valensi P, Shaban JA, Bushnell DM, Christensen TL. Patient treatment satisfaction after switching to NovoMix® 30 (BIAsp 30) in the IMPROVE™ study: an analysis of the influence of prior and current treatment factors. Qual Life Res. 2010;19(9):1285–93.PubMedPubMedCentralCrossRef Brod M, Valensi P, Shaban JA, Bushnell DM, Christensen TL. Patient treatment satisfaction after switching to NovoMix® 30 (BIAsp 30) in the IMPROVE™ study: an analysis of the influence of prior and current treatment factors. Qual Life Res. 2010;19(9):1285–93.PubMedPubMedCentralCrossRef
20.
go back to reference Lucas JS, Behan L, Dunn Galvin A, Alpern A, Morris AM, Carroll MP, Knowles MR, Leigh MW, Quittner AL. A quality-of-life measure for adults with primary ciliary dyskinesia: QOL-PCD. Eur Respir J. 2015;46(2):375–83.PubMedPubMedCentralCrossRef Lucas JS, Behan L, Dunn Galvin A, Alpern A, Morris AM, Carroll MP, Knowles MR, Leigh MW, Quittner AL. A quality-of-life measure for adults with primary ciliary dyskinesia: QOL-PCD. Eur Respir J. 2015;46(2):375–83.PubMedPubMedCentralCrossRef
21.
go back to reference Tran V-T, Barnes C, Montori VM, Falissard B, Ravaud P. Taxonomy of the burden of treatment: a multi-country web-based qualitative study of patients with chronic conditions. BMC Med. 2015;13(1):115–115. 111pCrossRef Tran V-T, Barnes C, Montori VM, Falissard B, Ravaud P. Taxonomy of the burden of treatment: a multi-country web-based qualitative study of patients with chronic conditions. BMC Med. 2015;13(1):115–115. 111pCrossRef
22.
go back to reference Baylor CR, Yorkston KM, Eadie TL, Maronian NC. The psychosocial consequences of BOTOX injections for spasmodic dysphonia: a qualitative study of patients' experiences. J Voice. 2007;21(2):231–47. 217pPubMedCrossRef Baylor CR, Yorkston KM, Eadie TL, Maronian NC. The psychosocial consequences of BOTOX injections for spasmodic dysphonia: a qualitative study of patients' experiences. J Voice. 2007;21(2):231–47. 217pPubMedCrossRef
23.
go back to reference Gallacher KI, Batty GD, McLean G, Mercer SW, Guthrie B, May CR, Langhorne P, Mair FS. Stroke, multimorbidity and polypharmacy in a nationally representative sample of 1,424,378 patients in Scotland: implications for treatment burden. BMC Med. 2014;12(1):151–151. 151pCrossRef Gallacher KI, Batty GD, McLean G, Mercer SW, Guthrie B, May CR, Langhorne P, Mair FS. Stroke, multimorbidity and polypharmacy in a nationally representative sample of 1,424,378 patients in Scotland: implications for treatment burden. BMC Med. 2014;12(1):151–151. 151pCrossRef
24.
go back to reference Sav A, McMillan SS, Kelly F, Kendall E, Whitty JA, King MA, Wheeler AJ. Treatment burden among people with chronic illness: what are consumer health organizations saying. Chronic Illness. 2013;9(3):220–32.PubMedCrossRef Sav A, McMillan SS, Kelly F, Kendall E, Whitty JA, King MA, Wheeler AJ. Treatment burden among people with chronic illness: what are consumer health organizations saying. Chronic Illness. 2013;9(3):220–32.PubMedCrossRef
25.
go back to reference Eton DT, Ramalho de Oliveira D, Egginton JS, Ridgeway JL, Odell L, May CR, Montori VM. building a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Relat Outcome Measures. 2012;3:39–49.CrossRef Eton DT, Ramalho de Oliveira D, Egginton JS, Ridgeway JL, Odell L, May CR, Montori VM. building a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Relat Outcome Measures. 2012;3:39–49.CrossRef
26.
go back to reference Eton DT, Ridgeway JL, Egginton JS, Tiedje K, Linzer M, Boehm DH, Poplau S, Ramalho de Oliveira D, Odell L, Montori VM, et al. finalizing a measurement framework for the burden of treatment in complex patients with chronic conditions. Patient Relat Outcome Measures. 2015;6:117–26.CrossRef Eton DT, Ridgeway JL, Egginton JS, Tiedje K, Linzer M, Boehm DH, Poplau S, Ramalho de Oliveira D, Odell L, Montori VM, et al. finalizing a measurement framework for the burden of treatment in complex patients with chronic conditions. Patient Relat Outcome Measures. 2015;6:117–26.CrossRef
27.
go back to reference Kahn LS, Vest BM, Madurai N, Singh R, York TRM, Cipparone CW, Reilly S, Malik KS, Fox CH. Chronic kidney disease (CKD) treatment burden among low-income primary care patients. Chronic Illn. 2015;11(3):171–83.PubMedCrossRef Kahn LS, Vest BM, Madurai N, Singh R, York TRM, Cipparone CW, Reilly S, Malik KS, Fox CH. Chronic kidney disease (CKD) treatment burden among low-income primary care patients. Chronic Illn. 2015;11(3):171–83.PubMedCrossRef
28.
go back to reference Karamanidou C, Weinman J, Horne R. A qualitative study of treatment burden among haemodialysis recipients. J Health Psychol. 2014;19(4):556–69.PubMedCrossRef Karamanidou C, Weinman J, Horne R. A qualitative study of treatment burden among haemodialysis recipients. J Health Psychol. 2014;19(4):556–69.PubMedCrossRef
29.
go back to reference Ridgeway JL, Egginton JS, Tiedje K, Linzer M, Boehm D, Poplau S, de Oliveira DR, Odell L, Montori VM, Eton DT. Factors that lessen the burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Preference Adherence. 2014;8:339–51.PubMedPubMedCentralCrossRef Ridgeway JL, Egginton JS, Tiedje K, Linzer M, Boehm D, Poplau S, de Oliveira DR, Odell L, Montori VM, Eton DT. Factors that lessen the burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Preference Adherence. 2014;8:339–51.PubMedPubMedCentralCrossRef
30.
go back to reference Eton DT, Yost KJ, Lai JS, Ridgeway JL, Egginton JS, Rosedahl JK, Linzer M, Boehm DH, Thakur A, Poplau S, et al. Development and validation of the patient experience with treatment and self-management (PETS): a patient-reported measure of treatment burden. Qual Life Res. 2016:1–15. Eton DT, Yost KJ, Lai JS, Ridgeway JL, Egginton JS, Rosedahl JK, Linzer M, Boehm DH, Thakur A, Poplau S, et al. Development and validation of the patient experience with treatment and self-management (PETS): a patient-reported measure of treatment burden. Qual Life Res. 2016:1–15.
31.
go back to reference Nordyke RJ, Chang C-H, Chiou C-F, Wallace JF, Yao B, Schwartzberg LS. Validation of a patient satisfaction questionnaire for anemia treatment, the PSQ-an. Health Qual Life Outcomes. 2006;4:28–28.CrossRef Nordyke RJ, Chang C-H, Chiou C-F, Wallace JF, Yao B, Schwartzberg LS. Validation of a patient satisfaction questionnaire for anemia treatment, the PSQ-an. Health Qual Life Outcomes. 2006;4:28–28.CrossRef
32.
go back to reference Henry DH, Viswanathan HN, Elkin EP, Traina S, Wade S, Cella D. Symptoms and treatment burden associated with cancer treatment: results from a cross-sectional national survey in the U.S. Support Care Cancer. 2008;16(7):791–801.PubMedCrossRef Henry DH, Viswanathan HN, Elkin EP, Traina S, Wade S, Cella D. Symptoms and treatment burden associated with cancer treatment: results from a cross-sectional national survey in the U.S. Support Care Cancer. 2008;16(7):791–801.PubMedCrossRef
33.
go back to reference Bohlen K, Scoville E, Shippee ND, May CR, Montori VM. Overwhelmed Patients: A videographic analysis of how patients with type 2 diabetes and clinicians articulate and address treatment burden during clinical encounters. Diab Care. 2012;35(1):47–9. 43pCrossRef Bohlen K, Scoville E, Shippee ND, May CR, Montori VM. Overwhelmed Patients: A videographic analysis of how patients with type 2 diabetes and clinicians articulate and address treatment burden during clinical encounters. Diab Care. 2012;35(1):47–9. 43pCrossRef
34.
go back to reference Jordan S, Philpin S, Warring J, Cheung WY, Williams J. Percutaneous endoscopic gastrostomies: the burden of treatment from a patient perspective. J Adv Nurs. 2006;56(3):270–81.PubMedCrossRef Jordan S, Philpin S, Warring J, Cheung WY, Williams J. Percutaneous endoscopic gastrostomies: the burden of treatment from a patient perspective. J Adv Nurs. 2006;56(3):270–81.PubMedCrossRef
35.
go back to reference Atkinson MJ, Sinha A, Hass SL, Colman SS, Kumar RN, Brod M, Rowland CR. Validation of a general measure of treatment satisfaction, the treatment satisfaction questionnaire for medication (TSQM), using a national panel study of chronic disease. Health Qual Life Outcomes. 2004;2(1):12.PubMedPubMedCentralCrossRef Atkinson MJ, Sinha A, Hass SL, Colman SS, Kumar RN, Brod M, Rowland CR. Validation of a general measure of treatment satisfaction, the treatment satisfaction questionnaire for medication (TSQM), using a national panel study of chronic disease. Health Qual Life Outcomes. 2004;2(1):12.PubMedPubMedCentralCrossRef
36.
go back to reference Alpern AN, Brumback LC, Ratjen F, Rosenfeld M, Davis SD, Quittner AL. Initial evaluation of the parent cystic fibrosis questionnaire-revised (CFQ-R) in infants and young children. J Cyst Fibros. 2015;14(3):403–11.PubMedCrossRef Alpern AN, Brumback LC, Ratjen F, Rosenfeld M, Davis SD, Quittner AL. Initial evaluation of the parent cystic fibrosis questionnaire-revised (CFQ-R) in infants and young children. J Cyst Fibros. 2015;14(3):403–11.PubMedCrossRef
37.
go back to reference Beek L, Schappin R, Gooskens R, Huisman J, Jongmans M. Surviving a brain tumor in childhood: impact on family functioning in adolescence. Psycho-Oncology. 2015;24(1):89–94.PubMedCrossRef Beek L, Schappin R, Gooskens R, Huisman J, Jongmans M. Surviving a brain tumor in childhood: impact on family functioning in adolescence. Psycho-Oncology. 2015;24(1):89–94.PubMedCrossRef
38.
go back to reference Brod M, Christensen T, Bushnell D. Maximizing the value of validation findings to better understand treatment satisfaction issues for diabetes. Qual Life Res. 2007;16(6):1053–63.PubMedCrossRef Brod M, Christensen T, Bushnell D. Maximizing the value of validation findings to better understand treatment satisfaction issues for diabetes. Qual Life Res. 2007;16(6):1053–63.PubMedCrossRef
39.
go back to reference Brod M, Christensen T, Hammer M, Busk AK, Bushnell DM. Examining the ability to detect change using the TRIM-diabetes and TRIM-diabetes device measures. Qual Life Res. 2011;20(9):1513–8.PubMedPubMedCentralCrossRef Brod M, Christensen T, Hammer M, Busk AK, Bushnell DM. Examining the ability to detect change using the TRIM-diabetes and TRIM-diabetes device measures. Qual Life Res. 2011;20(9):1513–8.PubMedPubMedCentralCrossRef
40.
go back to reference Colombo C, Daccò V, Alicandro G, Loi S, Mazzi S, Lucioni C, Ravasio R. Cost of cystic fibrosis: analysis of treatment costs in a specialized center in northern Italy. Adv Ther. 2013;30(2):165–75. 111pPubMedCrossRef Colombo C, Daccò V, Alicandro G, Loi S, Mazzi S, Lucioni C, Ravasio R. Cost of cystic fibrosis: analysis of treatment costs in a specialized center in northern Italy. Adv Ther. 2013;30(2):165–75. 111pPubMedCrossRef
41.
go back to reference Garg S, Bailey T, Deluzio T, Pollom D. Preference for a new prefilled insulin pen compared with the original pen. Curr Med Res Opin. 2011;27(12):2323–33. 2311pPubMedCrossRef Garg S, Bailey T, Deluzio T, Pollom D. Preference for a new prefilled insulin pen compared with the original pen. Curr Med Res Opin. 2011;27(12):2323–33. 2311pPubMedCrossRef
42.
go back to reference Grootscholten C, Snoek FJ, Bijl M, van Houwelingen HC, Derksen RHW, Berden JHM. Health-related quality of life and treatment burden in patients with proliferative lupus nephritis treated with cyclophosphamide or azathioprine/methylprednisolone in a randomized controlled trial. J Rheumatol. 2007;34(8):1699–707. 1699pPubMed Grootscholten C, Snoek FJ, Bijl M, van Houwelingen HC, Derksen RHW, Berden JHM. Health-related quality of life and treatment burden in patients with proliferative lupus nephritis treated with cyclophosphamide or azathioprine/methylprednisolone in a randomized controlled trial. J Rheumatol. 2007;34(8):1699–707. 1699pPubMed
43.
go back to reference Hanke WC, Norlin JM, Mark Knudsen K, Larsson T, Stone S. Quality of life in treatment of AK: treatment burden of ingenol mebutate gel is small and short lasting. J Dermatol Treat. 2016;27(5):450–5.CrossRef Hanke WC, Norlin JM, Mark Knudsen K, Larsson T, Stone S. Quality of life in treatment of AK: treatment burden of ingenol mebutate gel is small and short lasting. J Dermatol Treat. 2016;27(5):450–5.CrossRef
44.
go back to reference Janssen DJ, Spruit MA, Schols JM, Wouters EF. A call for high-quality advance care planning in outpatients with severe COPD or chronic heart failure. CHEST. 2011;139(5):1081–8. 1088pPubMedCrossRef Janssen DJ, Spruit MA, Schols JM, Wouters EF. A call for high-quality advance care planning in outpatients with severe COPD or chronic heart failure. CHEST. 2011;139(5):1081–8. 1088pPubMedCrossRef
45.
go back to reference Kent EE, Forsythe LP, Yabroff KR, Weaver KE, de Moor JS, Rodriguez JL, Rowland JH: Are survivors who report cancer-related financial problems more likely to forgo or delay medical care? Cancer (0008543X) 2013, 119(20):3710–3717 3718p. Kent EE, Forsythe LP, Yabroff KR, Weaver KE, de Moor JS, Rodriguez JL, Rowland JH: Are survivors who report cancer-related financial problems more likely to forgo or delay medical care? Cancer (0008543X) 2013, 119(20):3710–3717 3718p.
46.
go back to reference Leung E, Warde P, Jewett M, Panzarella T, O'Malley M, Sweet J, Moore M, Sturgeon J, Gospodarowicz M, Chung P. Treatment burden in stage i seminoma: a comparison of surveillance and adjuvant radiation therapy. BJU Int. 2013;112(8):1088–95.PubMedCrossRef Leung E, Warde P, Jewett M, Panzarella T, O'Malley M, Sweet J, Moore M, Sturgeon J, Gospodarowicz M, Chung P. Treatment burden in stage i seminoma: a comparison of surveillance and adjuvant radiation therapy. BJU Int. 2013;112(8):1088–95.PubMedCrossRef
47.
go back to reference Liu JY, Woloshin S, Laycock WS, Rothstein RI, Finlayson SRG, Schwartz LM. Symptoms and treatment burden of gastroesophageal reflux disease: validating the GERD assessment scales. Arch Intern Med. 2004;164(18):2058–64.PubMedCrossRef Liu JY, Woloshin S, Laycock WS, Rothstein RI, Finlayson SRG, Schwartz LM. Symptoms and treatment burden of gastroesophageal reflux disease: validating the GERD assessment scales. Arch Intern Med. 2004;164(18):2058–64.PubMedCrossRef
48.
go back to reference Ovayolu Ö, Ovayolu N, Ae D, Özkaya M. The Challenge of Diabetes in the Elderly and Affecting Factors. Holist Nurs Pract. 2015;29(5):272–9. 278pPubMedCrossRef Ovayolu Ö, Ovayolu N, Ae D, Özkaya M. The Challenge of Diabetes in the Elderly and Affecting Factors. Holist Nurs Pract. 2015;29(5):272–9. 278pPubMedCrossRef
49.
go back to reference Schmittdiel JA, Raebel MA, Dyer W, Xu S, Goodrich GK, Schroeder EB, Segal JB, Connor PJ O’, Nichols GA, Lawrence JM, et al. Prescription medication burden in patients with newly diagnosed diabetes: a SUrveillance, PREvention, and ManagEment of Diabetes Mellitus (SUPREME-DM) study. J Am Pharm Assoc (2003). 2014;54(4):374–82. 379pCrossRef Schmittdiel JA, Raebel MA, Dyer W, Xu S, Goodrich GK, Schroeder EB, Segal JB, Connor PJ O’, Nichols GA, Lawrence JM, et al. Prescription medication burden in patients with newly diagnosed diabetes: a SUrveillance, PREvention, and ManagEment of Diabetes Mellitus (SUPREME-DM) study. J Am Pharm Assoc (2003). 2014;54(4):374–82. 379pCrossRef
50.
go back to reference Shah S, Akbari M, Vanga R, Kelly CP, Hansen J, Theethira T, Tariq S, Dennis M, Leffler DA. Patient perception of treatment burden is high in celiac disease compared with other common conditions. Am J Gastroenterol. 2014;109(9):1304–11.PubMedPubMedCentralCrossRef Shah S, Akbari M, Vanga R, Kelly CP, Hansen J, Theethira T, Tariq S, Dennis M, Leffler DA. Patient perception of treatment burden is high in celiac disease compared with other common conditions. Am J Gastroenterol. 2014;109(9):1304–11.PubMedPubMedCentralCrossRef
51.
go back to reference Dewulf J, Vermeulen F, Wanyama S, Thomas M, Proesmans M, Dupont L, De Boeck K. Treatment burden in patients with at least one class IV or v CFTR mutation. Pediatr Pulmonol. 2015;50(12):1230–6.PubMedCrossRef Dewulf J, Vermeulen F, Wanyama S, Thomas M, Proesmans M, Dupont L, De Boeck K. Treatment burden in patients with at least one class IV or v CFTR mutation. Pediatr Pulmonol. 2015;50(12):1230–6.PubMedCrossRef
52.
go back to reference Groeneveld IF, Sosa ES, Pérez M, Fiuza-Luces C, Gonzalez-Saiz L, Gallardo C, López-Mojares LM, Ruiz JR, Lucia A. Health-related quality of life of Spanish children with cystic fibrosis. Qual Life Res. 2012;21(10):1837–45.PubMedPubMedCentralCrossRef Groeneveld IF, Sosa ES, Pérez M, Fiuza-Luces C, Gonzalez-Saiz L, Gallardo C, López-Mojares LM, Ruiz JR, Lucia A. Health-related quality of life of Spanish children with cystic fibrosis. Qual Life Res. 2012;21(10):1837–45.PubMedPubMedCentralCrossRef
53.
go back to reference Havermans T, Vreys M, Proesmans M, De Boeck C. Assessment of agreement between parents and children on health-related quality of life in children with cystic fibrosis. Child Care Health Dev. 2006;32(1):1–7.PubMedCrossRef Havermans T, Vreys M, Proesmans M, De Boeck C. Assessment of agreement between parents and children on health-related quality of life in children with cystic fibrosis. Child Care Health Dev. 2006;32(1):1–7.PubMedCrossRef
54.
go back to reference Henry B, Aussage P, Grosskopf C, Goehrs J-M. Development of the cystic fibrosis questionnaire (CFQ) for assessing quality of life in pediatric and adult patients. Qual Life Res. 2003;12(1):63–76.PubMedCrossRef Henry B, Aussage P, Grosskopf C, Goehrs J-M. Development of the cystic fibrosis questionnaire (CFQ) for assessing quality of life in pediatric and adult patients. Qual Life Res. 2003;12(1):63–76.PubMedCrossRef
55.
go back to reference McCullough AR, Tunney MM, Quittner AL, Elborn JS, Bradley JM, Hughes CM. Treatment adherence and health outcomes in patients with bronchiectasis. BMC Pulm Med. 2014:14(1). McCullough AR, Tunney MM, Quittner AL, Elborn JS, Bradley JM, Hughes CM. Treatment adherence and health outcomes in patients with bronchiectasis. BMC Pulm Med. 2014:14(1).
56.
go back to reference Modi AC, Quittner AL. Validation of a disease-specific measure of health-related quality of life for children with cystic fibrosis. J Pediatr Psychol. 2003;28(8):535–46.PubMedCrossRef Modi AC, Quittner AL. Validation of a disease-specific measure of health-related quality of life for children with cystic fibrosis. J Pediatr Psychol. 2003;28(8):535–46.PubMedCrossRef
57.
go back to reference Sawicki GS, Rasouliyan L, McMullen AH, Wagener JS, McColley SA, Pasta DJ, Quittner AL. Longitudinal assessment of health-related quality of life in an observational cohort of patients with cystic fibrosis. Pediatr Pulmonol. 2011;46(1):36–44.PubMedCrossRef Sawicki GS, Rasouliyan L, McMullen AH, Wagener JS, McColley SA, Pasta DJ, Quittner AL. Longitudinal assessment of health-related quality of life in an observational cohort of patients with cystic fibrosis. Pediatr Pulmonol. 2011;46(1):36–44.PubMedCrossRef
58.
go back to reference Blanch-Hartigan D, Chawla N, Beckjord EI, Forsythe LP, de Moor JS, Hesse BW, Arora NK. Cancer survivors' receipt of treatment summaries and implications for patient-centered communication and quality of care. Patient Educ Couns. 2015;98(10):1274–9.PubMedPubMedCentralCrossRef Blanch-Hartigan D, Chawla N, Beckjord EI, Forsythe LP, de Moor JS, Hesse BW, Arora NK. Cancer survivors' receipt of treatment summaries and implications for patient-centered communication and quality of care. Patient Educ Couns. 2015;98(10):1274–9.PubMedPubMedCentralCrossRef
59.
go back to reference Duclos M, Dejager S, Postel-Vinay N, di Nicola S, Quéré S, Fiquet B: Physical activity in patients with type 2 diabetes and hypertension--insights into motivations and barriers from the MOBILE study. Vasc Health Risk Manag 2015, 11:361–371 311p. Duclos M, Dejager S, Postel-Vinay N, di Nicola S, Quéré S, Fiquet B: Physical activity in patients with type 2 diabetes and hypertension--insights into motivations and barriers from the MOBILE study. Vasc Health Risk Manag 2015, 11:361–371 311p.
60.
go back to reference Fraser SDS, Roderick PJ, May CR, McIntyre N, McIntyre C, Fluck RJ, Shardlow A, Taal MW. The burden of comorbidity in people with chronic kidney disease stage 3: a cohort study. BMC Nephrology. 2015;16:193–03. 111pPubMedPubMedCentralCrossRef Fraser SDS, Roderick PJ, May CR, McIntyre N, McIntyre C, Fluck RJ, Shardlow A, Taal MW. The burden of comorbidity in people with chronic kidney disease stage 3: a cohort study. BMC Nephrology. 2015;16:193–03. 111pPubMedPubMedCentralCrossRef
61.
go back to reference Hock R, Kinsman A, Ortaglia A. Examining treatment adherence among parents of children with autism spectrum disorder. Disabil Health J. 2015;8(3):407–13.PubMedCrossRef Hock R, Kinsman A, Ortaglia A. Examining treatment adherence among parents of children with autism spectrum disorder. Disabil Health J. 2015;8(3):407–13.PubMedCrossRef
62.
go back to reference Olveira C, Olveira G, Espildora F, Giron RM, Muñoz G, Quittner AL, Martinez-Garcia MA. Validation of a quality of life questionnaire for bronchiectasis: psychometric analyses of the Spanish QOL-B-V3.0. Qual Life Res. 2014;23(4):1279–92.PubMedCrossRef Olveira C, Olveira G, Espildora F, Giron RM, Muñoz G, Quittner AL, Martinez-Garcia MA. Validation of a quality of life questionnaire for bronchiectasis: psychometric analyses of the Spanish QOL-B-V3.0. Qual Life Res. 2014;23(4):1279–92.PubMedCrossRef
63.
go back to reference Robertson J, Doran E, Henry DA, Salkeld G. Prescription medicines: decision-making preferences of patients who receive different levels of public subsidy. Health Expect. 2014;17(1):15–26. 12pPubMedCrossRef Robertson J, Doran E, Henry DA, Salkeld G. Prescription medicines: decision-making preferences of patients who receive different levels of public subsidy. Health Expect. 2014;17(1):15–26. 12pPubMedCrossRef
64.
go back to reference Wolff J, Boyd C, Wolff JL, Boyd CM. A Look at Person- and Family-Centered Care Among Older Adults: Results from a National Survey [corrected]. JGIM. 2015;30(10):1497–504. 1498pPubMedPubMedCentralCrossRef Wolff J, Boyd C, Wolff JL, Boyd CM. A Look at Person- and Family-Centered Care Among Older Adults: Results from a National Survey [corrected]. JGIM. 2015;30(10):1497–504. 1498pPubMedPubMedCentralCrossRef
65.
go back to reference Dill EJ, Dawson R, Sellers DE, Robinson WM, Sawicki GS. Longitudinal trends in health-related quality of life in adults with cystic fibrosis. CHEST. 2013;144(3):981–9. 989pPubMedPubMedCentralCrossRef Dill EJ, Dawson R, Sellers DE, Robinson WM, Sawicki GS. Longitudinal trends in health-related quality of life in adults with cystic fibrosis. CHEST. 2013;144(3):981–9. 989pPubMedPubMedCentralCrossRef
66.
go back to reference Drabe N, Steinert H, Moergeli H, Weidt S, Strobel K, Jenewein J. Perception of treatment burden, psychological distress, and fatigue in thyroid cancer patients and their partners – effects of gender, role, and time since diagnosis. Psycho-Oncology. 2016;25:203–9. Drabe N, Steinert H, Moergeli H, Weidt S, Strobel K, Jenewein J. Perception of treatment burden, psychological distress, and fatigue in thyroid cancer patients and their partners – effects of gender, role, and time since diagnosis. Psycho-Oncology. 2016;25:203–9.
67.
go back to reference Fried TR, Bradley EH, Towle VR, Allore H. Understanding the treatment preferences of seriously ill patients. N Engl J Med. 2002;346(14):1061–6.PubMedCrossRef Fried TR, Bradley EH, Towle VR, Allore H. Understanding the treatment preferences of seriously ill patients. N Engl J Med. 2002;346(14):1061–6.PubMedCrossRef
68.
go back to reference Ziaian T, Sawyer MG, Reynolds KE, Carbone JA, Clark JJ, Baghurst PA, Couper JJ, Kennedy D, Martin AJ, Staugas RE, et al. Treatment burden and health-related quality of life of children with diabetes, cystic fibrosis and asthma. J Paediatr Child Health. 2006;42(10):596–600.PubMedCrossRef Ziaian T, Sawyer MG, Reynolds KE, Carbone JA, Clark JJ, Baghurst PA, Couper JJ, Kennedy D, Martin AJ, Staugas RE, et al. Treatment burden and health-related quality of life of children with diabetes, cystic fibrosis and asthma. J Paediatr Child Health. 2006;42(10):596–600.PubMedCrossRef
69.
go back to reference Avisar A, Lavie-Ajayi M. The burden of treatment: listening to stories of adolescents with ADHD about stimulant medication use. Ethical Hum Psychol Psychiatry: Int J Crit Inq. 2014;16(1):37–50.CrossRef Avisar A, Lavie-Ajayi M. The burden of treatment: listening to stories of adolescents with ADHD about stimulant medication use. Ethical Hum Psychol Psychiatry: Int J Crit Inq. 2014;16(1):37–50.CrossRef
70.
go back to reference Fried TR, Bradley EH. What matters to seriously ill older persons making end-of-life treatment decisions?: A qualitative study. J Palliat Med. 2003;6(2):237–44. 238pPubMedCrossRef Fried TR, Bradley EH. What matters to seriously ill older persons making end-of-life treatment decisions?: A qualitative study. J Palliat Med. 2003;6(2):237–44. 238pPubMedCrossRef
71.
go back to reference Hyland ME, Whalley B, Jones RC, Masoli M. A qualitative study of the impact of severe asthma and its treatment showing that treatment burden is neglected in existing asthma assessment scales. Qual Life Res. 2015;24(3):631–9.PubMedCrossRef Hyland ME, Whalley B, Jones RC, Masoli M. A qualitative study of the impact of severe asthma and its treatment showing that treatment burden is neglected in existing asthma assessment scales. Qual Life Res. 2015;24(3):631–9.PubMedCrossRef
72.
go back to reference Sawicki GS, Heller KS, Demars N, Robinson WM. Motivating adherence among adolescents with cystic fibrosis: youth and parent perspectives. Pediatr Pulmonol. 2015;50(2):127–36.PubMedCrossRef Sawicki GS, Heller KS, Demars N, Robinson WM. Motivating adherence among adolescents with cystic fibrosis: youth and parent perspectives. Pediatr Pulmonol. 2015;50(2):127–36.PubMedCrossRef
73.
go back to reference Tunnicliffe DJ, Singh-Grewal D, Chaitow J, Mackie F, Manolios N, Lin M-W, O'Neill SG, Ralph AF, Craig JC, Tong A. Lupus means sacrifices: perspectives of adolescents and young adults with systemic lupus Erythematosus. Arthritis Care Res. 2016;68(6):828–37.CrossRef Tunnicliffe DJ, Singh-Grewal D, Chaitow J, Mackie F, Manolios N, Lin M-W, O'Neill SG, Ralph AF, Craig JC, Tong A. Lupus means sacrifices: perspectives of adolescents and young adults with systemic lupus Erythematosus. Arthritis Care Res. 2016;68(6):828–37.CrossRef
74.
go back to reference Yorke J, Armstrong I, Bundock S. Impact of living with pulmonary hypertension: a qualitative exploration. Nursing Health Sci. 2014;16(4):454–60.CrossRef Yorke J, Armstrong I, Bundock S. Impact of living with pulmonary hypertension: a qualitative exploration. Nursing Health Sci. 2014;16(4):454–60.CrossRef
75.
go back to reference Hogan A, Bonney M-A, Brien J-A, Karamy R, Aslani P. Factors affecting nebulised medicine adherence in adult patients with cystic fibrosis: a qualitative study. Int J Clin Pharm. 2015;37(1):86–93. 88pPubMedCrossRef Hogan A, Bonney M-A, Brien J-A, Karamy R, Aslani P. Factors affecting nebulised medicine adherence in adult patients with cystic fibrosis: a qualitative study. Int J Clin Pharm. 2015;37(1):86–93. 88pPubMedCrossRef
76.
go back to reference Singer JP, Chen J, Katz PP, Blanc PD, Kagawa-Singer M, Stewart AL. Defining novel health-related quality of life domains in lung transplantation: a qualitative analysis. Qual Life Res. 2015;24(6):1521–33. 1513pPubMedCrossRef Singer JP, Chen J, Katz PP, Blanc PD, Kagawa-Singer M, Stewart AL. Defining novel health-related quality of life domains in lung transplantation: a qualitative analysis. Qual Life Res. 2015;24(6):1521–33. 1513pPubMedCrossRef
77.
go back to reference Levinson M, Mills A, Oldroyd J, Gellie A, Barrett J, Staples M, Stephenson G. The impact of intensive care in a private hospital on patients aged 80 and over: health-related quality of life, functional status and burden versus benefit. Intern Med J. 2016;46(6):694–702.PubMedCrossRef Levinson M, Mills A, Oldroyd J, Gellie A, Barrett J, Staples M, Stephenson G. The impact of intensive care in a private hospital on patients aged 80 and over: health-related quality of life, functional status and burden versus benefit. Intern Med J. 2016;46(6):694–702.PubMedCrossRef
78.
go back to reference Quittner AL, Marciel KK, Salathe MA, O'Donnell AE, Gotfried MH, Ilowite JS, Metersky ML, Flume PA, Lewis SA, McKevitt M, et al. A preliminary quality of life questionnaire-bronchiectasis: a patient-reported outcome measure for bronchiectasis. CHEST. 2014;146(2):437–48. 412pPubMedCrossRef Quittner AL, Marciel KK, Salathe MA, O'Donnell AE, Gotfried MH, Ilowite JS, Metersky ML, Flume PA, Lewis SA, McKevitt M, et al. A preliminary quality of life questionnaire-bronchiectasis: a patient-reported outcome measure for bronchiectasis. CHEST. 2014;146(2):437–48. 412pPubMedCrossRef
79.
go back to reference Moock J, Hessel F, Ziegeler D, Kubiak T, Kohlmann T. Development and testing of the insulin treatment experience questionnaire (ITEQ). The Patient: Patient-Centered Outcomes Res. 2010;3(1):45–58.CrossRef Moock J, Hessel F, Ziegeler D, Kubiak T, Kohlmann T. Development and testing of the insulin treatment experience questionnaire (ITEQ). The Patient: Patient-Centered Outcomes Res. 2010;3(1):45–58.CrossRef
80.
go back to reference Fried TR, Bradley EH, Towle VR. Assessment of patient preferences: integrating treatments and outcomes. J Gerontol B Psychol Sci Soc Sci. 2002;57B(6):S348–54. 341pCrossRef Fried TR, Bradley EH, Towle VR. Assessment of patient preferences: integrating treatments and outcomes. J Gerontol B Psychol Sci Soc Sci. 2002;57B(6):S348–54. 341pCrossRef
81.
go back to reference Barrett-Lee P, Bloomfield D, Dougherty L, Harries M, Laing R, Patel H, Walker M. An audit to determine the time taken to administer intravenous bisphosphonate infusions in patients diagnosed with metastatic breast cancer to bone in a hospital setting. Curr Med Res Opin. 2007;23(7):1575–82. 1578pPubMedCrossRef Barrett-Lee P, Bloomfield D, Dougherty L, Harries M, Laing R, Patel H, Walker M. An audit to determine the time taken to administer intravenous bisphosphonate infusions in patients diagnosed with metastatic breast cancer to bone in a hospital setting. Curr Med Res Opin. 2007;23(7):1575–82. 1578pPubMedCrossRef
82.
go back to reference Benner JS, Chapman RH, Petrilla AA, Tang SSK, Rosenberg N, Schwartz JS. Association between prescription burden and medication adherence in patients initiating antihypertensive and lipid-lowering therapy. Am J Health-Sys Pharm. 2009;66(16):1471–7. 1477pCrossRef Benner JS, Chapman RH, Petrilla AA, Tang SSK, Rosenberg N, Schwartz JS. Association between prescription burden and medication adherence in patients initiating antihypertensive and lipid-lowering therapy. Am J Health-Sys Pharm. 2009;66(16):1471–7. 1477pCrossRef
83.
go back to reference Black JA, Long GH, Sharp SJ, Kuznetsov L, Boothby CE, Griffin SJ, Simmons RK. Change in cardio-protective medication and health-related quality of life after diagnosis of screen-detected diabetes: Results from the ADDITION-Cambridge cohort. Diab Res Clin Pract. 2015;109(1):170–7. 178pCrossRef Black JA, Long GH, Sharp SJ, Kuznetsov L, Boothby CE, Griffin SJ, Simmons RK. Change in cardio-protective medication and health-related quality of life after diagnosis of screen-detected diabetes: Results from the ADDITION-Cambridge cohort. Diab Res Clin Pract. 2015;109(1):170–7. 178pCrossRef
84.
go back to reference Blome C, Gosau R, Radtke MA, Reich K, Rustenbach SJ, Spehr C, Thaçi D, Augustin M. Patient-relevant treatment goals in psoriasis. Arch Dermatol Res. 2016;308(2):69–78.PubMedCrossRef Blome C, Gosau R, Radtke MA, Reich K, Rustenbach SJ, Spehr C, Thaçi D, Augustin M. Patient-relevant treatment goals in psoriasis. Arch Dermatol Res. 2016;308(2):69–78.PubMedCrossRef
85.
go back to reference Broom R, Du H, Clemons M, Eton D, Dranitsaris G, Simmons C, Ooi W, Cella D. Switching breast cancer patients with progressive bone metastases to third-generation bisphosphonates: measuring impact using the Functional Assessment of Cancer Therapy-Bone Pain. J Pain Symptom Manage. 2009;38(2):244–57. 214pPubMedCrossRef Broom R, Du H, Clemons M, Eton D, Dranitsaris G, Simmons C, Ooi W, Cella D. Switching breast cancer patients with progressive bone metastases to third-generation bisphosphonates: measuring impact using the Functional Assessment of Cancer Therapy-Bone Pain. J Pain Symptom Manage. 2009;38(2):244–57. 214pPubMedCrossRef
86.
go back to reference Brose LS, Bradley C. Psychometric development of the Retinopathy Treatment Satisfaction Questionnaire (RetTSQ). Psychol Health Med. 2009;14(6):740–54. 715pPubMedCrossRef Brose LS, Bradley C. Psychometric development of the Retinopathy Treatment Satisfaction Questionnaire (RetTSQ). Psychol Health Med. 2009;14(6):740–54. 715pPubMedCrossRef
87.
go back to reference Burcu M, Alexander GC, Ng X, Harrington D. Construct Validity and Factor Structure of Survey-based Assessment of Cost-related Medication Burden. Med Care. 2015;53(2):199–206. 198pPubMedCrossRef Burcu M, Alexander GC, Ng X, Harrington D. Construct Validity and Factor Structure of Survey-based Assessment of Cost-related Medication Burden. Med Care. 2015;53(2):199–206. 198pPubMedCrossRef
88.
go back to reference De Smedt RHE, Haaijer-Ruskamp FM, Groenier KH, van der Meer K, Jaarsma T. Perceived adverse drug events in heart failure: patients' perceptions and related factors. J Cardiovasc Nurs. 2011;26(3):250–60. 211pPubMedCrossRef De Smedt RHE, Haaijer-Ruskamp FM, Groenier KH, van der Meer K, Jaarsma T. Perceived adverse drug events in heart failure: patients' perceptions and related factors. J Cardiovasc Nurs. 2011;26(3):250–60. 211pPubMedCrossRef
89.
go back to reference Eiser C, Upton P. Costs of caring for a child with cancer: a questionnaire survey. Child Care Health Dev. 2007;33(4):455–9.PubMedCrossRef Eiser C, Upton P. Costs of caring for a child with cancer: a questionnaire survey. Child Care Health Dev. 2007;33(4):455–9.PubMedCrossRef
90.
go back to reference Foltz R, Huefner JC. The subjective experience of being medicated in troubled youth: a sample from residential treatment. J Child Fam Stud. 2014;23(4):752–63.CrossRef Foltz R, Huefner JC. The subjective experience of being medicated in troubled youth: a sample from residential treatment. J Child Fam Stud. 2014;23(4):752–63.CrossRef
91.
go back to reference Garfield LD, Dixon D, Nowotny P, Lotrich FE, Pollock BG, Kristjansson SD, Doré PM, Lenze EJ. Common selective serotonin reuptake inhibitor side effects in older adults associated with genetic polymorphisms in the serotonin transporter and receptors: data from a randomized controlled trial. Am J Geriat Psychiatry. 2014;22(10):971–9. 979pCrossRef Garfield LD, Dixon D, Nowotny P, Lotrich FE, Pollock BG, Kristjansson SD, Doré PM, Lenze EJ. Common selective serotonin reuptake inhibitor side effects in older adults associated with genetic polymorphisms in the serotonin transporter and receptors: data from a randomized controlled trial. Am J Geriat Psychiatry. 2014;22(10):971–9. 979pCrossRef
92.
go back to reference Lau DT, Mercaldo ND, Shega JW, Rademaker A, Weintraub S. Functional decline associated with polypharmacy and potentially inappropriate medications in community-dwelling older adults with dementia. Am J Alzheimers Dis Other Demen. 2011;26(8):606–15.PubMedPubMedCentralCrossRef Lau DT, Mercaldo ND, Shega JW, Rademaker A, Weintraub S. Functional decline associated with polypharmacy and potentially inappropriate medications in community-dwelling older adults with dementia. Am J Alzheimers Dis Other Demen. 2011;26(8):606–15.PubMedPubMedCentralCrossRef
93.
go back to reference Lundy E, McMullan D, McShane P, Williams M, Watson M, White C. Polypharmacy and Drug Omissions across Hospices in Northern Ireland. J Palliat Med. 2013;16(11):1446–9. 1444pPubMedCrossRef Lundy E, McMullan D, McShane P, Williams M, Watson M, White C. Polypharmacy and Drug Omissions across Hospices in Northern Ireland. J Palliat Med. 2013;16(11):1446–9. 1444pPubMedCrossRef
94.
go back to reference Miller JE, Nugent CN, Russell LB. Which components of medical homes reduce the time burden on families of children with special health care needs. Health Serv Res. 2015;50(2):440–61. 422pPubMedCrossRef Miller JE, Nugent CN, Russell LB. Which components of medical homes reduce the time burden on families of children with special health care needs. Health Serv Res. 2015;50(2):440–61. 422pPubMedCrossRef
95.
go back to reference Miller JE, Nugent CN, Russell LB. Risk factors for family time burdens providing and arranging health care for children with special health care needs: lessons from nonproportional odds models. Soc Sci Res. 2015;52:602–14.PubMedCrossRef Miller JE, Nugent CN, Russell LB. Risk factors for family time burdens providing and arranging health care for children with special health care needs: lessons from nonproportional odds models. Soc Sci Res. 2015;52:602–14.PubMedCrossRef
96.
go back to reference Mofizul Islam M, McRae IS, Yen L, Jowsey T, Valderas JM. Time spent on health-related activities by senior Australians with chronic diseases: what is the role of multimorbidity and comorbidity? Aust N Z J Public Health. 2015;39(3):277–83.PubMedCrossRef Mofizul Islam M, McRae IS, Yen L, Jowsey T, Valderas JM. Time spent on health-related activities by senior Australians with chronic diseases: what is the role of multimorbidity and comorbidity? Aust N Z J Public Health. 2015;39(3):277–83.PubMedCrossRef
97.
go back to reference Passik SD, Kirsh KL, Rosenfeld B, McDonald MV, Theobald DE. The changeable nature of patients' fears regarding chemotherapy: implications for palliative care. J Pain Symptom Manage. 2001;21(2):113–20. 118pPubMedCrossRef Passik SD, Kirsh KL, Rosenfeld B, McDonald MV, Theobald DE. The changeable nature of patients' fears regarding chemotherapy: implications for palliative care. J Pain Symptom Manage. 2001;21(2):113–20. 118pPubMedCrossRef
98.
go back to reference Peeters L, Sibille A, Anrys B, Oyen C, Dooms C, Nackaerts K, Wauters I, Vansteenkiste J. Maintenance therapy for advanced non-small-cell lung cancer: a pilot study on patients' perceptions. J Thorac Oncol. 2012;7(8):1291–5. 1295pPubMedCrossRef Peeters L, Sibille A, Anrys B, Oyen C, Dooms C, Nackaerts K, Wauters I, Vansteenkiste J. Maintenance therapy for advanced non-small-cell lung cancer: a pilot study on patients' perceptions. J Thorac Oncol. 2012;7(8):1291–5. 1295pPubMedCrossRef
99.
go back to reference Robertson TA, Cooke CE, Wang J, Shaya FT, Lee HY. Effect of medication burden on persistent use of lipid-lowering drugs among patients with hypertension. Am J Manag Care. 2008;14(11):710–6. 717pPubMed Robertson TA, Cooke CE, Wang J, Shaya FT, Lee HY. Effect of medication burden on persistent use of lipid-lowering drugs among patients with hypertension. Am J Manag Care. 2008;14(11):710–6. 717pPubMed
100.
go back to reference Voorham J, Haaijer-Ruskamp FM, Wolffenbuttel BHR, Stolk RP, Denig P. Cardiometabolic treatment decisions in patients with type 2 diabetes: the role of repeated measurements and medication burden. Qual Saf Health Care. 2010;19(5):411–5. 415pPubMed Voorham J, Haaijer-Ruskamp FM, Wolffenbuttel BHR, Stolk RP, Denig P. Cardiometabolic treatment decisions in patients with type 2 diabetes: the role of repeated measurements and medication burden. Qual Saf Health Care. 2010;19(5):411–5. 415pPubMed
101.
go back to reference Wright KD, Asmundson GJG. Brief report: factor structure of the childhood illness attitude scales (CIAS). J Pediatr Psychol. 2005;30(2):213–8.PubMedCrossRef Wright KD, Asmundson GJG. Brief report: factor structure of the childhood illness attitude scales (CIAS). J Pediatr Psychol. 2005;30(2):213–8.PubMedCrossRef
102.
go back to reference Zan H, Scharff R. The Heterogeneity in Financial and Time Burden of Caregiving to Children with Chronic Conditions. Matern Child Health J. 2015;19(3):615–25. 611pPubMedCrossRef Zan H, Scharff R. The Heterogeneity in Financial and Time Burden of Caregiving to Children with Chronic Conditions. Matern Child Health J. 2015;19(3):615–25. 611pPubMedCrossRef
103.
go back to reference Zeber JE, Miller AL, Copeland LA, McCarthy JF, Zivin K, Valenstein M, Greenwald D, Kilbourne AM. Medication adherence, ethnicity, and the influence of multiple psychosocial and financial barriers. Adm Policy Ment Health Ment Health Serv Res. 2011;38(2):86–95.CrossRef Zeber JE, Miller AL, Copeland LA, McCarthy JF, Zivin K, Valenstein M, Greenwald D, Kilbourne AM. Medication adherence, ethnicity, and the influence of multiple psychosocial and financial barriers. Adm Policy Ment Health Ment Health Serv Res. 2011;38(2):86–95.CrossRef
104.
go back to reference Bower P, Harkness E, Macdonald W, Coventry P, Bundy C, Moss-Morris R. Illness representations in patients with multimorbid long-term conditions: Qualitative study. Psychol Health. 2012;27(10):1211–26. 1216pPubMedCrossRef Bower P, Harkness E, Macdonald W, Coventry P, Bundy C, Moss-Morris R. Illness representations in patients with multimorbid long-term conditions: Qualitative study. Psychol Health. 2012;27(10):1211–26. 1216pPubMedCrossRef
105.
go back to reference Janke EA, Ramirez ML, Haltzman B, Fritz M, Kozak AT. Patient’s Experience with comorbidity management in primary care: a qualitative study of comorbid pain and obesity. Prim Health Care Res Dev. 2016;17(1):33–41. Janke EA, Ramirez ML, Haltzman B, Fritz M, Kozak AT. Patient’s Experience with comorbidity management in primary care: a qualitative study of comorbid pain and obesity. Prim Health Care Res Dev. 2016;17(1):33–41.
106.
go back to reference Johnston S, Noble H. Factors influencing patients with stage 5 chronic kidney disease to opt for conservative management: a practitioner research study. J Clin Nurs. 2012;21(9/10):1215–22. 1218pPubMedCrossRef Johnston S, Noble H. Factors influencing patients with stage 5 chronic kidney disease to opt for conservative management: a practitioner research study. J Clin Nurs. 2012;21(9/10):1215–22. 1218pPubMedCrossRef
107.
go back to reference Lourens M. An exploration of Xhosa speaking patients’ understanding of cancer treatment and its influence on their treatment experience. J Psychosoc Oncol. 2013;31(1):103–21.PubMedCrossRef Lourens M. An exploration of Xhosa speaking patients’ understanding of cancer treatment and its influence on their treatment experience. J Psychosoc Oncol. 2013;31(1):103–21.PubMedCrossRef
108.
go back to reference Obeidat RF, Dickerson SS, Homish GG, Alqaissi NM, Lally RM. Controlling fear: Jordanian women’s perceptions of the diagnosis and surgical treatment of early-stage breast cancer. Cancer Nurs. 2013;36(6):484–92.PubMedCrossRef Obeidat RF, Dickerson SS, Homish GG, Alqaissi NM, Lally RM. Controlling fear: Jordanian women’s perceptions of the diagnosis and surgical treatment of early-stage breast cancer. Cancer Nurs. 2013;36(6):484–92.PubMedCrossRef
109.
go back to reference Salter ML, Kumar K, Law AH, Gupta N, Marks K, Balhara K, McAdams-DeMarco MA, Taylor LA, Segev DL. Perceptions about hemodialysis and transplantation among African American adults with end-stage renal disease: inferences from focus groups. BMC Nephrol. 2015;16(1):49–49. 41pCrossRef Salter ML, Kumar K, Law AH, Gupta N, Marks K, Balhara K, McAdams-DeMarco MA, Taylor LA, Segev DL. Perceptions about hemodialysis and transplantation among African American adults with end-stage renal disease: inferences from focus groups. BMC Nephrol. 2015;16(1):49–49. 41pCrossRef
110.
go back to reference Shahid S, Finn L, Bessarab D, Thompson SC. Nowhere to room... nobody told them: logistical and cultural impediments to Aboriginal peoples' participation in cancer treatment. Aust Health Rev. 2011;35(2):235–41. 237pPubMedCrossRef Shahid S, Finn L, Bessarab D, Thompson SC. Nowhere to room... nobody told them: logistical and cultural impediments to Aboriginal peoples' participation in cancer treatment. Aust Health Rev. 2011;35(2):235–41. 237pPubMedCrossRef
111.
go back to reference Stajduhar KI, Neithercut J, Chu E, Pham P, Rohde J, Sicotte A, Young K: Thyroid cancer: patients' experiences of receiving iodine-131 therapy. Oncology Nursing Forum 2000, 27(8):1213–1218 1216p. Stajduhar KI, Neithercut J, Chu E, Pham P, Rohde J, Sicotte A, Young K: Thyroid cancer: patients' experiences of receiving iodine-131 therapy. Oncology Nursing Forum 2000, 27(8):1213–1218 1216p.
112.
go back to reference Taylor RM, Franck LS, Dhawan A, Gibson F. The stories of young people living with a liver transplant. Qual Health Res. 2010;20(8):1076–90.PubMedCrossRef Taylor RM, Franck LS, Dhawan A, Gibson F. The stories of young people living with a liver transplant. Qual Health Res. 2010;20(8):1076–90.PubMedCrossRef
113.
go back to reference Tjia J, Givens JL, Karlawish JH, Okoli-Umeweni A, Barg FK. Beneath the surface: discovering the unvoiced concerns of older adults with Type 2 diabetes mellitus. Health Educ Res. 2008;23(1):40–52. 13pPubMedCrossRef Tjia J, Givens JL, Karlawish JH, Okoli-Umeweni A, Barg FK. Beneath the surface: discovering the unvoiced concerns of older adults with Type 2 diabetes mellitus. Health Educ Res. 2008;23(1):40–52. 13pPubMedCrossRef
114.
go back to reference Clark JA, Bokhour BG, Inui TS, Silliman RA, Talcott JA. Measuring patients' perceptions of the outcomes of treatment for early prostate cancer. Med Care. 2003;41(8):923–36. 914pPubMedCrossRef Clark JA, Bokhour BG, Inui TS, Silliman RA, Talcott JA. Measuring patients' perceptions of the outcomes of treatment for early prostate cancer. Med Care. 2003;41(8):923–36. 914pPubMedCrossRef
115.
go back to reference Tijerina MS. Psychosocial factors influencing Mexican-American women's adherence with hemodialysis treatment. Soc Work Health Care. 2006;43(1):57–74. 18pPubMedCrossRef Tijerina MS. Psychosocial factors influencing Mexican-American women's adherence with hemodialysis treatment. Soc Work Health Care. 2006;43(1):57–74. 18pPubMedCrossRef
116.
go back to reference Shippee ND, Shah ND, May CR, Mair FS, Montori VM. Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol. 2012;65(10):1041–51.PubMedCrossRef Shippee ND, Shah ND, May CR, Mair FS, Montori VM. Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol. 2012;65(10):1041–51.PubMedCrossRef
117.
go back to reference Baatiema L, De-Graft Aikins A, Sav A, Mnatzaganian G, Chan KYC, Somerset S. Barriers to evidence-based acute stroke care in Ghana: a qualitative study on the perspectives of stroke care professionals. BMJ Open Under Rev. Baatiema L, De-Graft Aikins A, Sav A, Mnatzaganian G, Chan KYC, Somerset S. Barriers to evidence-based acute stroke care in Ghana: a qualitative study on the perspectives of stroke care professionals. BMJ Open Under Rev.
118.
go back to reference Morrison A, Polisena J, Husereau D, Moulton K, Clark M, Fiander M, Mierzwinski-Urban M, Clifford T, Hutton B, Rabb D. The effect of English-language restriction on systematic review-based meta-analyses: a systematic review of empirical studies. Int J Technol Assess Health Care. 2012;28(2):138–44.PubMedCrossRef Morrison A, Polisena J, Husereau D, Moulton K, Clark M, Fiander M, Mierzwinski-Urban M, Clifford T, Hutton B, Rabb D. The effect of English-language restriction on systematic review-based meta-analyses: a systematic review of empirical studies. Int J Technol Assess Health Care. 2012;28(2):138–44.PubMedCrossRef
Metadata
Title
Measuring the burden of treatment for chronic disease: implications of a scoping review of the literature
Authors
Adem Sav
Asiyeh Salehi
Frances S. Mair
Sara S. McMillan
Publication date
01-12-2017
Publisher
BioMed Central
Published in
BMC Medical Research Methodology / Issue 1/2017
Electronic ISSN: 1471-2288
DOI
https://doi.org/10.1186/s12874-017-0411-8

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