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Gepubliceerd in: Quality of Life Research 3/2017

17-01-2017

Are intensive data collection methods in pain research feasible in those with physical disability? A study in persons with chronic pain and spinal cord injury

Auteurs: A. L. Kratz, C. Z. Kalpakjian, R. A. Hanks

Gepubliceerd in: Quality of Life Research | Uitgave 3/2017

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Abstract

Purpose

Intensive repeated measures data collection procedures, such as ecological momentary assessment (EMA) and end-of-day (EOD) diaries, are becoming more prominent in pain research. Existing data on the feasibility of such methods is encouraging; however, almost nothing is known about feasibility in clinical populations with significant physical disabilities. Research methodology feasibility is crucial to the inclusion of individuals with physical disability in pain research given the high prevalence and impact of pain in these populations. The aim of this study was to examine study compliance, protocol acceptability, and reactivity of intensive data collection methods in adults with chronic pain and spinal cord injury (SCI).

Methods

Secondary analysis of data from a 7-day EMA and EOD diary study in a sample of 131 community dwelling adults with SCI.

Results

Results showed rates of missing data ranged from 18.4 to 22.8% across measures. Participant compliance was related to time of day/presence of audible prompts, mobility aid use, race, and baseline levels of pain and pain interference, with more missing data at wake and bedtimes/no prompts, and for those who used hand-held mobility devices, identified as black/African American, and/or reported higher baseline pain and pain interference. Participants rated the study methodology as generally highly acceptable and expressed willingness to participate in similar studies of much longer duration. There was no evidence of reactivity, defined as temporal shifts in pain or pain interference ratings.

Conclusions

Overall, intensive pain data collection is feasible in persons with SCI with no evidence that the methodology impacts pain intensity or pain interference ratings.
Literatuur
1.
go back to reference Pengel, L.H., Refshauge, K.M., & Maher, C.G. (2004). Responsiveness of pain, disability, and physical impairment outcomes in patients with low back pain. Spine (Phila Pa 1976), 29(8), 879–883.CrossRef Pengel, L.H., Refshauge, K.M., & Maher, C.G. (2004). Responsiveness of pain, disability, and physical impairment outcomes in patients with low back pain. Spine (Phila Pa 1976), 29(8), 879–883.CrossRef
2.
go back to reference Ullrich, P.M. (2007). Pain following spinal cord injury. Physical Medicine and Rehabilitation Clinics of North America, 18(2), 217–233. vi.CrossRefPubMed Ullrich, P.M. (2007). Pain following spinal cord injury. Physical Medicine and Rehabilitation Clinics of North America, 18(2), 217–233. vi.CrossRefPubMed
3.
go back to reference Willen, C., & Grimby, G. (1998). Pain, physical activity, and disability in individuals with late effects of polio. Archives of Physical Medicine and Rehabilitation, 79(8), 915–919.CrossRefPubMed Willen, C., & Grimby, G. (1998). Pain, physical activity, and disability in individuals with late effects of polio. Archives of Physical Medicine and Rehabilitation, 79(8), 915–919.CrossRefPubMed
4.
go back to reference Ehde, D.M., Osborne, T.L., Hanley, M.A., Jensen, M.P., & Kraft, G.H. (2006). The scope and nature of pain in persons with multiple sclerosis. Multiple Sclerosis (Houndmills, Basingstoke, England), 12(5), 629–638.CrossRef Ehde, D.M., Osborne, T.L., Hanley, M.A., Jensen, M.P., & Kraft, G.H. (2006). The scope and nature of pain in persons with multiple sclerosis. Multiple Sclerosis (Houndmills, Basingstoke, England), 12(5), 629–638.CrossRef
5.
go back to reference Ehde, D.M., Osborne, T.L., & Jensen, M.P. (2005). Chronic pain in persons with multiple sclerosis. Physical Medicine and Rehabilitation Clinics of North America, 16(2), 503–512.CrossRefPubMed Ehde, D.M., Osborne, T.L., & Jensen, M.P. (2005). Chronic pain in persons with multiple sclerosis. Physical Medicine and Rehabilitation Clinics of North America, 16(2), 503–512.CrossRefPubMed
6.
go back to reference Ehde, D.M., Jensen, M.P., Engel, J.M., Turner, J.A., Hoffman, A.J., & Cardenas, D.D. (2003). Chronic pain secondary to disability: a review. The Clinical Journal of Pain, 19(1), 3–17.CrossRefPubMed Ehde, D.M., Jensen, M.P., Engel, J.M., Turner, J.A., Hoffman, A.J., & Cardenas, D.D. (2003). Chronic pain secondary to disability: a review. The Clinical Journal of Pain, 19(1), 3–17.CrossRefPubMed
7.
go back to reference Heapy, A., Dziura, J., Buta, E., Goulet, J., Kulas, J.F., & Kerns, R.D. (2014). Using multiple daily pain ratings to improve reliability and assay sensitivity: how many is enough? The Journal of Pain: Official Journal of the American Pain Society, 15(12), 1360–1365.CrossRef Heapy, A., Dziura, J., Buta, E., Goulet, J., Kulas, J.F., & Kerns, R.D. (2014). Using multiple daily pain ratings to improve reliability and assay sensitivity: how many is enough? The Journal of Pain: Official Journal of the American Pain Society, 15(12), 1360–1365.CrossRef
8.
go back to reference Schneider, S., & Stone, A.A. (2016). Ambulatory and diary methods can facilitate the measurement of patient-reported outcomes. Quality of Life Research: an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 25(3), 497–506.CrossRef Schneider, S., & Stone, A.A. (2016). Ambulatory and diary methods can facilitate the measurement of patient-reported outcomes. Quality of Life Research: an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 25(3), 497–506.CrossRef
9.
go back to reference Shiffman, S., Stone, A.A., & Hufford, M.R. (2008). Ecological momentary assessment. Annual Review of Clinical Psychology, 4, 1–32.CrossRefPubMed Shiffman, S., Stone, A.A., & Hufford, M.R. (2008). Ecological momentary assessment. Annual Review of Clinical Psychology, 4, 1–32.CrossRefPubMed
10.
go back to reference Stone, A.A., & Shiffman, S. (1994). Ecological momentary assessment (EMA) in behavioral medicine. Annals of Behavioral Medicine, 16(3), 199–202. Stone, A.A., & Shiffman, S. (1994). Ecological momentary assessment (EMA) in behavioral medicine. Annals of Behavioral Medicine, 16(3), 199–202.
11.
go back to reference Sorbi, M.J., Mak, S.B., Houtveen, H., Kleiboer, A.M., & van Doornen, L.J.P. (2007). Mobile web-based monitoring and coaching: feasibility in chronic migraine. Journal of Medical Internet Research, 9(5). Sorbi, M.J., Mak, S.B., Houtveen, H., Kleiboer, A.M., & van Doornen, L.J.P. (2007). Mobile web-based monitoring and coaching: feasibility in chronic migraine. Journal of Medical Internet Research, 9(5).
12.
go back to reference Stinson, J.N., Petroz, G.C., Stevens, B.J., Feldman, B.M., Streiner, D., McGrath, P.J., & Gill, N. (2008). Working out the kinks: testing the feasibility of an electronic pain diary for adolescents with arthritis. Pain Research and Management, 13(5), 375–382.CrossRefPubMedPubMedCentral Stinson, J.N., Petroz, G.C., Stevens, B.J., Feldman, B.M., Streiner, D., McGrath, P.J., & Gill, N. (2008). Working out the kinks: testing the feasibility of an electronic pain diary for adolescents with arthritis. Pain Research and Management, 13(5), 375–382.CrossRefPubMedPubMedCentral
13.
go back to reference Litcher-Kelly, L., Kellerman, Q., Hanauer, S.B., & Stone, A.A. (2007). Feasibility and utility of an electronic diary to assess self-report symptoms in patients with inflammatory bowel disease. Annals of Behavioral Medicine, 33(2), 207–212.CrossRefPubMed Litcher-Kelly, L., Kellerman, Q., Hanauer, S.B., & Stone, A.A. (2007). Feasibility and utility of an electronic diary to assess self-report symptoms in patients with inflammatory bowel disease. Annals of Behavioral Medicine, 33(2), 207–212.CrossRefPubMed
14.
go back to reference Stone, A.A., Shiffman, S., Schwartz, J.E., Broderick, J.E., & Hufford, M.R. (2003). Patient compliance with paper and electronic diaries. Controlled Clinical Trials, 24(2), 182–199.CrossRefPubMed Stone, A.A., Shiffman, S., Schwartz, J.E., Broderick, J.E., & Hufford, M.R. (2003). Patient compliance with paper and electronic diaries. Controlled Clinical Trials, 24(2), 182–199.CrossRefPubMed
15.
go back to reference Stone, A.A., Shiffman, S., Schwartz, J.E., Broderick, J.E., & Hufford, M.R. (2002). Patient non-compliance with paper diaries. British Medical Journal, 324(7347), 1193–1194.CrossRefPubMedPubMedCentral Stone, A.A., Shiffman, S., Schwartz, J.E., Broderick, J.E., & Hufford, M.R. (2002). Patient non-compliance with paper diaries. British Medical Journal, 324(7347), 1193–1194.CrossRefPubMedPubMedCentral
16.
go back to reference Stone, A.A., Broderick, J.E., Schwartz, J.E., Shiffman, S., Litcher-Kelly, L., & Calvanese, P. (2003). Intensive momentary reporting of pain with an electronic diary: reactivity, compliance, and patient satisfaction. Pain, 104(1–2), 343–351.CrossRefPubMed Stone, A.A., Broderick, J.E., Schwartz, J.E., Shiffman, S., Litcher-Kelly, L., & Calvanese, P. (2003). Intensive momentary reporting of pain with an electronic diary: reactivity, compliance, and patient satisfaction. Pain, 104(1–2), 343–351.CrossRefPubMed
17.
go back to reference Kratz, A.L., Davis, M.C., & Zautra, A.J. (2012). Attachment predicts daily catastrophizing and social coping in women with pain. Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association, 31(3), 278–285.CrossRef Kratz, A.L., Davis, M.C., & Zautra, A.J. (2012). Attachment predicts daily catastrophizing and social coping in women with pain. Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association, 31(3), 278–285.CrossRef
18.
go back to reference Mazza, G. L., & Enders, C. K. (2014). Missing data analysis. In Handbook of research methods in social and personality psychology (2nd ed., pp. 627–652). New York, NY: Cambridge University Press. Mazza, G. L., & Enders, C. K. (2014). Missing data analysis. In Handbook of research methods in social and personality psychology (2nd ed., pp. 627–652). New York, NY: Cambridge University Press.
19.
go back to reference Enders, C. K., & Gottschall, A. C. (2011). The Impact of missing data on the ethical quality of a research study. In Handbook of ethics in quantitative methodology (pp. 357–381). New York, NY: Routledge, Taylor & Francis Group. Enders, C. K., & Gottschall, A. C. (2011). The Impact of missing data on the ethical quality of a research study. In Handbook of ethics in quantitative methodology (pp. 357–381). New York, NY: Routledge, Taylor & Francis Group.
20.
go back to reference Enders, C.K. (2004). The impact of missing data on sample reliability estimates: Implications for reliability reporting practices. Educational and Psychological Measurement, 64(3), 419–436.CrossRef Enders, C.K. (2004). The impact of missing data on sample reliability estimates: Implications for reliability reporting practices. Educational and Psychological Measurement, 64(3), 419–436.CrossRef
21.
go back to reference Enders, C. K. (2010). Applied missing data analysis. New York: The Guilford Press. Enders, C. K. (2010). Applied missing data analysis. New York: The Guilford Press.
22.
go back to reference Cruise, C.E., Broderick, J., Porter, L., Kaell, A., & Stone, A.A. (1996). Reactive effects of diary self-assessment in chronic pain patients. Pain, 67(2–3), 253–258.CrossRefPubMed Cruise, C.E., Broderick, J., Porter, L., Kaell, A., & Stone, A.A. (1996). Reactive effects of diary self-assessment in chronic pain patients. Pain, 67(2–3), 253–258.CrossRefPubMed
23.
go back to reference Vonbaeyer, C.L. (1994). Reactive effects of measurement of pain. Clinical Journal of Pain, 10(1), 18–21.CrossRef Vonbaeyer, C.L. (1994). Reactive effects of measurement of pain. Clinical Journal of Pain, 10(1), 18–21.CrossRef
24.
go back to reference Finnerup, N.B., Johannesen, I.L., Sindrup, S.H., Bach, F.W., & Jensen, T. S. (2001). Pain and dysesthesia in patients with spinal cord injury: a postal survey. Spinal Cord: the Official Journal of the International Medical Society of Paraplegia, 39(5), 256–262.CrossRef Finnerup, N.B., Johannesen, I.L., Sindrup, S.H., Bach, F.W., & Jensen, T. S. (2001). Pain and dysesthesia in patients with spinal cord injury: a postal survey. Spinal Cord: the Official Journal of the International Medical Society of Paraplegia, 39(5), 256–262.CrossRef
25.
go back to reference Siddall, P.J., & Loeser, J.D. (2001). Pain following spinal cord injury. Spinal Cord: the Official Journal of the International Medical Society of Paraplegia, 39(2), 63–73.CrossRef Siddall, P.J., & Loeser, J.D. (2001). Pain following spinal cord injury. Spinal Cord: the Official Journal of the International Medical Society of Paraplegia, 39(2), 63–73.CrossRef
26.
go back to reference Bonica, J.J. (1991). History of pain concepts and pain therapy. The Mount Sinai Journal of Medicine, New York, 58(3), 191–202.PubMed Bonica, J.J. (1991). History of pain concepts and pain therapy. The Mount Sinai Journal of Medicine, New York, 58(3), 191–202.PubMed
27.
go back to reference Liam, C. K., Lim, K. H., Wong, C. M. M., & Tang, B. G. (1999). Attitudes and knowledge of newly diagnosed tuberculosis patients regarding the disease, and factors affecting treatment compliance. International Journal of Tuberculosis and Lung Disease, 3(4), 300–309.PubMed Liam, C. K., Lim, K. H., Wong, C. M. M., & Tang, B. G. (1999). Attitudes and knowledge of newly diagnosed tuberculosis patients regarding the disease, and factors affecting treatment compliance. International Journal of Tuberculosis and Lung Disease, 3(4), 300–309.PubMed
28.
go back to reference Singh, N., Squier, C., Sivek, C., Wagener, M., Nguyen, M. H., & Yu, V. L. (1996). Determinants of compliance with antiretroviral therapy in patients with human immunodeficiency virus: prospective assessment with implications for enhancing compliance. AIDS Care, 8(3), 261–269.CrossRefPubMed Singh, N., Squier, C., Sivek, C., Wagener, M., Nguyen, M. H., & Yu, V. L. (1996). Determinants of compliance with antiretroviral therapy in patients with human immunodeficiency virus: prospective assessment with implications for enhancing compliance. AIDS Care, 8(3), 261–269.CrossRefPubMed
29.
go back to reference Barocas, D.A., Grubb, R., Black, A., Penson, D.F., Fowke, J.H., Andriole, G., & Crawford, E.D. (2013). Association between race and follow-up diagnostic care after a positive prostate cancer screening test in the prostate, lung, colorectal, and ovarian cancer screening trial. Cancer, 119(12), 2223–2229.CrossRefPubMed Barocas, D.A., Grubb, R., Black, A., Penson, D.F., Fowke, J.H., Andriole, G., & Crawford, E.D. (2013). Association between race and follow-up diagnostic care after a positive prostate cancer screening test in the prostate, lung, colorectal, and ovarian cancer screening trial. Cancer, 119(12), 2223–2229.CrossRefPubMed
30.
go back to reference Fischer, S., Sun, S., Howard, L.E., Moreira, D.M., Castro-Santamaria, R., Andriole, G.L., Vidal, A.C., & Freedland, S.J. (2016). Baseline subject characteristics predictive of compliance with study-mandated prostate biopsy in men at risk of prostate cancer: results from REDUCE. Prostate Cancer and Prostatic Diseases, 19(2), 202–208.CrossRefPubMedPubMedCentral Fischer, S., Sun, S., Howard, L.E., Moreira, D.M., Castro-Santamaria, R., Andriole, G.L., Vidal, A.C., & Freedland, S.J. (2016). Baseline subject characteristics predictive of compliance with study-mandated prostate biopsy in men at risk of prostate cancer: results from REDUCE. Prostate Cancer and Prostatic Diseases, 19(2), 202–208.CrossRefPubMedPubMedCentral
31.
go back to reference Bryant, K., Wicks, M.N., & Willis, N. (2014). Recruitment of older African American males for depression research: lessons learned. Archives of Psychiatric Nursing, 28(1), 17–20.CrossRefPubMed Bryant, K., Wicks, M.N., & Willis, N. (2014). Recruitment of older African American males for depression research: lessons learned. Archives of Psychiatric Nursing, 28(1), 17–20.CrossRefPubMed
32.
go back to reference Dennis, B.P., & Neese, J.B. (2000). Recruitment and retention of African American elders into community-based research: lessons learned. Archives of Psychiatric Nursing, 14(1), 3–11.CrossRefPubMed Dennis, B.P., & Neese, J.B. (2000). Recruitment and retention of African American elders into community-based research: lessons learned. Archives of Psychiatric Nursing, 14(1), 3–11.CrossRefPubMed
33.
go back to reference Paskett, E.D., Reeves, K.W., McLaughlin, J.M., Katz, M.L., McAlearney, A.S., Ruffin, M.T., Halbert, C.H., Merete, C., Davis, F., & Gehlert, S. (2008). Recruitment of minority and underserved populations in the United States: the Centers for Population Health and Health Disparities experience. Contemporary Clinical Trials, 29(6), 847–861.CrossRefPubMedPubMedCentral Paskett, E.D., Reeves, K.W., McLaughlin, J.M., Katz, M.L., McAlearney, A.S., Ruffin, M.T., Halbert, C.H., Merete, C., Davis, F., & Gehlert, S. (2008). Recruitment of minority and underserved populations in the United States: the Centers for Population Health and Health Disparities experience. Contemporary Clinical Trials, 29(6), 847–861.CrossRefPubMedPubMedCentral
34.
go back to reference Kalpakjian, C.Z., Farrell, D.J., Albright, K.J., Chiodo, A., & Young, E.A. (2009). Association of daily stressors and salivary cortisol in spinal cord injury. Rehabilitation Psychology, 54(3), 288–298.CrossRefPubMedPubMedCentral Kalpakjian, C.Z., Farrell, D.J., Albright, K.J., Chiodo, A., & Young, E.A. (2009). Association of daily stressors and salivary cortisol in spinal cord injury. Rehabilitation Psychology, 54(3), 288–298.CrossRefPubMedPubMedCentral
35.
go back to reference Kratz, A. L., Ehde, D. M., Bombardier, C. H., Kalpakjian, C. Z., & Hanks, R. A. (2017). Pain acceptance decouples the momentary associations between pain, pain interference, and physical activity in the daily lives of people with chronic pain and spinal cord injury. The Journal of Pain (in press). Kratz, A. L., Ehde, D. M., Bombardier, C. H., Kalpakjian, C. Z., & Hanks, R. A. (2017). Pain acceptance decouples the momentary associations between pain, pain interference, and physical activity in the daily lives of people with chronic pain and spinal cord injury. The Journal of Pain (in press).
36.
go back to reference Cleeland, C. S. (1989). Measurement of pain by subjective report. In C. R. Chapman & J. D. Loeser (Eds.), Advances in pain research and therapy (Vol. 12, pp. 391–403). New York: Raven Press. Cleeland, C. S. (1989). Measurement of pain by subjective report. In C. R. Chapman & J. D. Loeser (Eds.), Advances in pain research and therapy (Vol. 12, pp. 391–403). New York: Raven Press.
37.
go back to reference Cleeland, C. S., & Ryan, K. M. (1994). Pain assessment: global use of the brief pain inventory. Annals of the Academy of Medicine, Singapore, 23(2), 129–138.PubMed Cleeland, C. S., & Ryan, K. M. (1994). Pain assessment: global use of the brief pain inventory. Annals of the Academy of Medicine, Singapore, 23(2), 129–138.PubMed
38.
go back to reference Hanley, M.A., Jensen, M.P., Ehde, D.M., Hoffman, A.J., Patterson, D.R., & Robinson, L.R. (2004). Psychosocial predictors of long-term adjustment to lower-limb amputation and phantom limb pain. Disability and Rehabilitation, 26(14–15), 882–893.CrossRefPubMed Hanley, M.A., Jensen, M.P., Ehde, D.M., Hoffman, A.J., Patterson, D.R., & Robinson, L.R. (2004). Psychosocial predictors of long-term adjustment to lower-limb amputation and phantom limb pain. Disability and Rehabilitation, 26(14–15), 882–893.CrossRefPubMed
39.
go back to reference Jensen, M P., Ehde, D.M., Hoffman, A.J., Patterson, D.R., Czerniecki, J.M., & Robinson, L.R. (2002). Cognitions, coping and social environment predict adjustment to phantom limb pain. Pain, 95(1–2), 133–142.CrossRefPubMed Jensen, M P., Ehde, D.M., Hoffman, A.J., Patterson, D.R., Czerniecki, J.M., & Robinson, L.R. (2002). Cognitions, coping and social environment predict adjustment to phantom limb pain. Pain, 95(1–2), 133–142.CrossRefPubMed
40.
go back to reference Osborne, T.L., Raichle, K.A., Jensen, M.P., Ehde, D.M., & Kraft, G. (2006). The reliability and validity of pain interference measures in persons with multiple sclerosis. Journal of Pain and Symptom Management, 32(3), 217–229.CrossRefPubMed Osborne, T.L., Raichle, K.A., Jensen, M.P., Ehde, D.M., & Kraft, G. (2006). The reliability and validity of pain interference measures in persons with multiple sclerosis. Journal of Pain and Symptom Management, 32(3), 217–229.CrossRefPubMed
41.
go back to reference Raichle, K.A., Osborne, T.L., Jensen, M.P., & Cardenas, D. (2006). The reliability and validity of pain interference measures in persons with spinal cord injury. The Journal of Pain: Official Journal of the American Pain Society, 7(3), 179–186.CrossRef Raichle, K.A., Osborne, T.L., Jensen, M.P., & Cardenas, D. (2006). The reliability and validity of pain interference measures in persons with spinal cord injury. The Journal of Pain: Official Journal of the American Pain Society, 7(3), 179–186.CrossRef
42.
go back to reference Tyler, E. J., Jensen, M. P., Engel, J. M., & Schwartz, L. (2002). The reliability and validity of pain interference measures in persons with cerebral palsy. Archives of Physical Medicine and Rehabilitation, 83(2), 236–239.CrossRefPubMed Tyler, E. J., Jensen, M. P., Engel, J. M., & Schwartz, L. (2002). The reliability and validity of pain interference measures in persons with cerebral palsy. Archives of Physical Medicine and Rehabilitation, 83(2), 236–239.CrossRefPubMed
43.
go back to reference Riley, W.T., Rothrock, N., Bruce, B., Christodolou, C., Cook, K., Hahn, E.A., & Cella, D. (2010). Patient-reported outcomes measurement information system (PROMIS) domain names and definitions revisions: further evaluation of content validity in IRT-derived item banks. Quality of Life Research, 19(9), 1311–1321.CrossRefPubMedPubMedCentral Riley, W.T., Rothrock, N., Bruce, B., Christodolou, C., Cook, K., Hahn, E.A., & Cella, D. (2010). Patient-reported outcomes measurement information system (PROMIS) domain names and definitions revisions: further evaluation of content validity in IRT-derived item banks. Quality of Life Research, 19(9), 1311–1321.CrossRefPubMedPubMedCentral
44.
go back to reference Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., Amtmann, D., Bode, R., Buysse, D., Choi, S., Cook, K., DeVellis, R., DeWalt, D., Fries, J.F., Gershon, R., Hahn, E.A., Lai, J.S., Pilkonis, P., Revicki, D., Rose, M., Weinfurt, K., Hays, R., & Grp, P.C. (2010). The patient-reported outcomes measurement information system (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. Journal of Clinical Epidemiology, 63(11), 1179–1194.CrossRefPubMedPubMedCentral Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., Amtmann, D., Bode, R., Buysse, D., Choi, S., Cook, K., DeVellis, R., DeWalt, D., Fries, J.F., Gershon, R., Hahn, E.A., Lai, J.S., Pilkonis, P., Revicki, D., Rose, M., Weinfurt, K., Hays, R., & Grp, P.C. (2010). The patient-reported outcomes measurement information system (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. Journal of Clinical Epidemiology, 63(11), 1179–1194.CrossRefPubMedPubMedCentral
45.
go back to reference Czajkowski, S.M., Cella, D., Stone, A.A., Amtmann, D., & Keefe, F. (2010). Patient-reported outcomes measurement information system (Promis): using new theory and technology to improve measurement of patient-reported outcomes in clinical research. Annals of Behavioral Medicine, 39, 46–46. Czajkowski, S.M., Cella, D., Stone, A.A., Amtmann, D., & Keefe, F. (2010). Patient-reported outcomes measurement information system (Promis): using new theory and technology to improve measurement of patient-reported outcomes in clinical research. Annals of Behavioral Medicine, 39, 46–46.
46.
go back to reference Cella, D., Rothrock, N., Choi, S., Lai, J.S., Yount, S., & Gershon, R. (2010). Promis overview: development of new tools for measuring health-related quality of life and related outcomes in patients with chronic diseases. Annals of Behavioral Medicine, 39, 47–47. Cella, D., Rothrock, N., Choi, S., Lai, J.S., Yount, S., & Gershon, R. (2010). Promis overview: development of new tools for measuring health-related quality of life and related outcomes in patients with chronic diseases. Annals of Behavioral Medicine, 39, 47–47.
47.
go back to reference Tulsky, D.S., Kisala, P.A., Victorson, D., Choi, S.W., Gershon, R., Heinemann, A.W., & Cella, D. (2015). Methodology for the development and calibration of the SCI-QOL item banks. The Journal of Spinal Cord Medicine, 38(3), 270–287.CrossRefPubMedPubMedCentral Tulsky, D.S., Kisala, P.A., Victorson, D., Choi, S.W., Gershon, R., Heinemann, A.W., & Cella, D. (2015). Methodology for the development and calibration of the SCI-QOL item banks. The Journal of Spinal Cord Medicine, 38(3), 270–287.CrossRefPubMedPubMedCentral
48.
go back to reference Tulsky, D.S., Kisala, P.A., Victorson, D., Tate, D.G., Heinemann, A.W., Charlifue, S., Kirshblum, S.C., Fyffe, D., Gershon, R., Spungen, A.M., Bombardier, C.H., Dyson-Hudson, T.A., Amtmann, D., Kalpakjian, C.Z., Choi, S.W., Jette, A.M., Forchheimer, M., & Cella, D. (2015). Overview of the Spinal Cord Injury–Quality of Life (SCI-QOL) measurement system. The Journal of Spinal Cord Medicine, 38(3), 257–269.CrossRefPubMedPubMedCentral Tulsky, D.S., Kisala, P.A., Victorson, D., Tate, D.G., Heinemann, A.W., Charlifue, S., Kirshblum, S.C., Fyffe, D., Gershon, R., Spungen, A.M., Bombardier, C.H., Dyson-Hudson, T.A., Amtmann, D., Kalpakjian, C.Z., Choi, S.W., Jette, A.M., Forchheimer, M., & Cella, D. (2015). Overview of the Spinal Cord Injury–Quality of Life (SCI-QOL) measurement system. The Journal of Spinal Cord Medicine, 38(3), 257–269.CrossRefPubMedPubMedCentral
49.
go back to reference Tulsky, D.S., & Kisala, P.A. (2015). The spinal cord injury–quality of life (SCI-QOL) measurement system: development, psychometrics, and item bank calibration. The Journal of Spinal Cord Medicine, 38(3), 251–256.CrossRefPubMedPubMedCentral Tulsky, D.S., & Kisala, P.A. (2015). The spinal cord injury–quality of life (SCI-QOL) measurement system: development, psychometrics, and item bank calibration. The Journal of Spinal Cord Medicine, 38(3), 251–256.CrossRefPubMedPubMedCentral
50.
go back to reference Riley, W.T., Rothrock, N., Bruce, B., Christodolou, C., Cook, K., Hahn, E.A., & Cella, D. (2010). Patient-reported outcomes measurement information system (PROMIS) domain names and definitions revisions: further evaluation of content validity in IRT-derived item banks. Quality of Life Research: an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 19(9), 1311–1321.CrossRef Riley, W.T., Rothrock, N., Bruce, B., Christodolou, C., Cook, K., Hahn, E.A., & Cella, D. (2010). Patient-reported outcomes measurement information system (PROMIS) domain names and definitions revisions: further evaluation of content validity in IRT-derived item banks. Quality of Life Research: an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 19(9), 1311–1321.CrossRef
51.
go back to reference Cook, K.F., Jensen, S.E., Schalet, B.D., Beaumont, J.L., Amtmann, D., Czajkowski, S., Dewalt, D.A., Fries, J.F., Pilkonis, P.A., Reeve, B.B., Stone, A.A., Weinfurt, K.P., & Cella, D. (2016). PROMIS measures of pain, fatigue, negative affect, physical function, and social function demonstrated clinical validity across a range of chronic conditions. Journal of Clinical Epidemiology, 73, 89–102.CrossRefPubMedPubMedCentral Cook, K.F., Jensen, S.E., Schalet, B.D., Beaumont, J.L., Amtmann, D., Czajkowski, S., Dewalt, D.A., Fries, J.F., Pilkonis, P.A., Reeve, B.B., Stone, A.A., Weinfurt, K.P., & Cella, D. (2016). PROMIS measures of pain, fatigue, negative affect, physical function, and social function demonstrated clinical validity across a range of chronic conditions. Journal of Clinical Epidemiology, 73, 89–102.CrossRefPubMedPubMedCentral
52.
go back to reference Stone, A.A., Broderick, J.E., Junghaenel, D. U., Schneider, S., & Schwartz, J.E. (2016). PROMIS fatigue, pain intensity, pain interference, pain behavior, physical function, depression, anxiety, and anger scales demonstrate ecological validity. Journal of Clinical Epidemiology, 74, 194–206.CrossRefPubMed Stone, A.A., Broderick, J.E., Junghaenel, D. U., Schneider, S., & Schwartz, J.E. (2016). PROMIS fatigue, pain intensity, pain interference, pain behavior, physical function, depression, anxiety, and anger scales demonstrate ecological validity. Journal of Clinical Epidemiology, 74, 194–206.CrossRefPubMed
53.
go back to reference Haerens, L., Deforche, B., Vandelanotte, C., Maes, L., & De Bourdeaudhuij, I. (2007). Acceptability, feasibility and effectiveness of a computer-tailored physical activity intervention in adolescents. Patient Education and Counseling, 66(3), 303–310.CrossRefPubMed Haerens, L., Deforche, B., Vandelanotte, C., Maes, L., & De Bourdeaudhuij, I. (2007). Acceptability, feasibility and effectiveness of a computer-tailored physical activity intervention in adolescents. Patient Education and Counseling, 66(3), 303–310.CrossRefPubMed
54.
go back to reference Vandelanotte, C., & De Bourdeaudhuij, I. (2003). Acceptability and feasibility of a computer-tailored physical activity intervention using stages of change: project FAITH. Health Education Research, 18(3), 304–317.CrossRefPubMed Vandelanotte, C., & De Bourdeaudhuij, I. (2003). Acceptability and feasibility of a computer-tailored physical activity intervention using stages of change: project FAITH. Health Education Research, 18(3), 304–317.CrossRefPubMed
55.
go back to reference Stone, A.A., & Neale, J.M. (1984). New measure of daily coping: development and preliminary results. Journal of Personality and Social Psychology, 46(4), 892–906.CrossRef Stone, A.A., & Neale, J.M. (1984). New measure of daily coping: development and preliminary results. Journal of Personality and Social Psychology, 46(4), 892–906.CrossRef
56.
go back to reference Rovner, G.S., Arestedt, K., Gerdle, B., Borsbo, B., & McCracken, L.M. (2014). Psychometric properties of the 8-item chronic pain acceptance questionnaire (CPAQ-8) in a Swedish chronic pain cohort. Journal of Rehabilitation Medicine: Official Journal of the UEMS European Board of Physical and Rehabilitation Medicine, 46(1), 73–80.CrossRef Rovner, G.S., Arestedt, K., Gerdle, B., Borsbo, B., & McCracken, L.M. (2014). Psychometric properties of the 8-item chronic pain acceptance questionnaire (CPAQ-8) in a Swedish chronic pain cohort. Journal of Rehabilitation Medicine: Official Journal of the UEMS European Board of Physical and Rehabilitation Medicine, 46(1), 73–80.CrossRef
57.
go back to reference Tulsky, D.S., Kisala, P.A., Kalpakjian, C.Z., Bombardier, C.H., Pohlig, R.T., Heinemann, A.W., Carle, A., & Choi, S.W. (2015). Measuring depression after spinal cord injury: development and psychometric characteristics of the SCI-QOL depression item bank and linkage with PHQ-9. The Journal of Spinal Cord Medicine, 38(3), 335–346.CrossRefPubMedPubMedCentral Tulsky, D.S., Kisala, P.A., Kalpakjian, C.Z., Bombardier, C.H., Pohlig, R.T., Heinemann, A.W., Carle, A., & Choi, S.W. (2015). Measuring depression after spinal cord injury: development and psychometric characteristics of the SCI-QOL depression item bank and linkage with PHQ-9. The Journal of Spinal Cord Medicine, 38(3), 335–346.CrossRefPubMedPubMedCentral
58.
go back to reference Tulsky, D.S., Jette, A.M., Kisala, P.A., Kalpakjian, C., Dijkers, M.P., Whiteneck, G., Ni, P., Kirshblum, S., Charlifue, S., Heinemann, A.W., Forchheimer, M., Slavin, M.D., Houlihan, B., Tate, D.G., Dyson-Hudson, T., Fyffe, D.G., Williams, S., & Zanca, J. (2012). Spinal cord injury-functional index: item banks to measure physical functioning in individuals with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 93(10), 1722–1732.CrossRefPubMedPubMedCentral Tulsky, D.S., Jette, A.M., Kisala, P.A., Kalpakjian, C., Dijkers, M.P., Whiteneck, G., Ni, P., Kirshblum, S., Charlifue, S., Heinemann, A.W., Forchheimer, M., Slavin, M.D., Houlihan, B., Tate, D.G., Dyson-Hudson, T., Fyffe, D.G., Williams, S., & Zanca, J. (2012). Spinal cord injury-functional index: item banks to measure physical functioning in individuals with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 93(10), 1722–1732.CrossRefPubMedPubMedCentral
59.
go back to reference Bertisch, H., Kalpakjian, C.Z., Kisala, P.A., & Tulsky, D. S. (2015). Measuring positive affect and well-being after spinal cord injury: development and psychometric characteristics of the SCI-QOL positive affect and Well-being bank and short form. The Journal of Spinal Cord Medicine, 38(3), 356–365.CrossRefPubMedPubMedCentral Bertisch, H., Kalpakjian, C.Z., Kisala, P.A., & Tulsky, D. S. (2015). Measuring positive affect and well-being after spinal cord injury: development and psychometric characteristics of the SCI-QOL positive affect and Well-being bank and short form. The Journal of Spinal Cord Medicine, 38(3), 356–365.CrossRefPubMedPubMedCentral
60.
go back to reference Heinemann, A. W., Kisala, P. A., Hahn, E. A., & Tulsky, D. S. (2015). Development and psychometric characteristics of the SCI-QOL ability to participate and satisfaction with social roles and activities item banks and short forms. The Journal of Spinal Cord Medicine, 38(3), 397–408.CrossRefPubMedPubMedCentral Heinemann, A. W., Kisala, P. A., Hahn, E. A., & Tulsky, D. S. (2015). Development and psychometric characteristics of the SCI-QOL ability to participate and satisfaction with social roles and activities item banks and short forms. The Journal of Spinal Cord Medicine, 38(3), 397–408.CrossRefPubMedPubMedCentral
61.
go back to reference Taylor, S., Allsop, M.J., Shaw, J., Bennett, M.I., Jones, R., & Bewick, B.M. (2015). The feasibility of collecting patient reported pain data using a system delivered across four modes of technology. Pain Medicine (Malden, Mass.), 16(11), 2212–2213.CrossRef Taylor, S., Allsop, M.J., Shaw, J., Bennett, M.I., Jones, R., & Bewick, B.M. (2015). The feasibility of collecting patient reported pain data using a system delivered across four modes of technology. Pain Medicine (Malden, Mass.), 16(11), 2212–2213.CrossRef
62.
go back to reference Hess, D.W., Ripley, D.L., McKinley, W.O., & Tewksbury, M. (2000). Predictors for return to work after spinal cord injury: a 3-year multicenter analysis. Archives of Physical Medicine and Rehabilitation, 81(3), 359–363.CrossRefPubMed Hess, D.W., Ripley, D.L., McKinley, W.O., & Tewksbury, M. (2000). Predictors for return to work after spinal cord injury: a 3-year multicenter analysis. Archives of Physical Medicine and Rehabilitation, 81(3), 359–363.CrossRefPubMed
63.
go back to reference Krause, J.S., & Broderick, L. (2004). Outcomes after spinal cord injury: comparisons as a function of gender and race and ethnicity. Archives of Physical Medicine and Rehabilitation, 85(3), 355–362.CrossRefPubMed Krause, J.S., & Broderick, L. (2004). Outcomes after spinal cord injury: comparisons as a function of gender and race and ethnicity. Archives of Physical Medicine and Rehabilitation, 85(3), 355–362.CrossRefPubMed
64.
go back to reference Hunt, P.C., Boninger, M.L., Cooper, R.A., Zafonte, R.D., Fitzgerald, S.G., & Schmeler, M.R. (2004). Demographic and socioeconomic factors associated with disparity in wheelchair customizability among people with traumatic spinal cord injury. Archives of Physical Medicine and Rehabilitation, 85(11), 1859–1864.CrossRefPubMed Hunt, P.C., Boninger, M.L., Cooper, R.A., Zafonte, R.D., Fitzgerald, S.G., & Schmeler, M.R. (2004). Demographic and socioeconomic factors associated with disparity in wheelchair customizability among people with traumatic spinal cord injury. Archives of Physical Medicine and Rehabilitation, 85(11), 1859–1864.CrossRefPubMed
65.
go back to reference Edwards, C.L., Fillingim, R.B., & Keefe, F. (2001). Race, ethnicity and pain. Pain, 94(2), 133–137.CrossRefPubMed Edwards, C.L., Fillingim, R.B., & Keefe, F. (2001). Race, ethnicity and pain. Pain, 94(2), 133–137.CrossRefPubMed
66.
go back to reference Broderick, J.E., Schwartz, J.E., Schneider, S., & Stone, A.A. (2009). Can End-of-day reports replace momentary assessment of pain and fatigue? The Journal of Pain: Official Journal of the American Pain Society, 10(3), 274–281.CrossRef Broderick, J.E., Schwartz, J.E., Schneider, S., & Stone, A.A. (2009). Can End-of-day reports replace momentary assessment of pain and fatigue? The Journal of Pain: Official Journal of the American Pain Society, 10(3), 274–281.CrossRef
67.
go back to reference Stone, A.A., Broderick, J.E., Shiffman, S.S., & Schwartz, J.E. (2004). Understanding recall of weekly pain from a momentary assessment perspective: absolute agreement, between- and within-person consistency, and judged change in weekly pain. Pain, 107(1–2), 61–69.CrossRefPubMed Stone, A.A., Broderick, J.E., Shiffman, S.S., & Schwartz, J.E. (2004). Understanding recall of weekly pain from a momentary assessment perspective: absolute agreement, between- and within-person consistency, and judged change in weekly pain. Pain, 107(1–2), 61–69.CrossRefPubMed
68.
go back to reference Carlson, E.B., Field, N.P., Ruzek, J.I., Bryant, R.A., Dalenberg, C.J., Keane, T.M., & Spain, D.A. (2016). Advantages and psychometric validation of proximal intensive assessments of patient-reported outcomes collected in daily life. Quality of life research: an international journal of quality of life aspects of treatment, care and rehabilitation, 25(3), 507–516.CrossRef Carlson, E.B., Field, N.P., Ruzek, J.I., Bryant, R.A., Dalenberg, C.J., Keane, T.M., & Spain, D.A. (2016). Advantages and psychometric validation of proximal intensive assessments of patient-reported outcomes collected in daily life. Quality of life research: an international journal of quality of life aspects of treatment, care and rehabilitation, 25(3), 507–516.CrossRef
69.
go back to reference Ballantyne, J.C., & Sullivan, M.D. (2015). Intensity of chronic pain–the wrong metric? The New England Journal of Medicine, 373(22), 2098–2099.CrossRefPubMed Ballantyne, J.C., & Sullivan, M.D. (2015). Intensity of chronic pain–the wrong metric? The New England Journal of Medicine, 373(22), 2098–2099.CrossRefPubMed
70.
go back to reference Ballantyne, J.C., & Sullivan, M.D. (2016). Intensity of chronic pain. The New England Journal of Medicine, 374(14), 1395.CrossRefPubMed Ballantyne, J.C., & Sullivan, M.D. (2016). Intensity of chronic pain. The New England Journal of Medicine, 374(14), 1395.CrossRefPubMed
71.
go back to reference Sullivan, M.D., & Ballantyne, J.C. (2016). Must we reduce pain intensity to treat chronic pain? Pain, 157(1), 65–69.CrossRefPubMed Sullivan, M.D., & Ballantyne, J.C. (2016). Must we reduce pain intensity to treat chronic pain? Pain, 157(1), 65–69.CrossRefPubMed
72.
go back to reference Wilson, M. (2014). Integrating the concept of pain interference into pain management. Pain Management nursing: Official Journal of the American Society of Pain Management Nurses, 15(2), 499–505.CrossRef Wilson, M. (2014). Integrating the concept of pain interference into pain management. Pain Management nursing: Official Journal of the American Society of Pain Management Nurses, 15(2), 499–505.CrossRef
73.
go back to reference Fox, P.L., Raina, P., & Jadad, A.R. (1999). Prevalence and treatment of pain in older adults in nursing homes and other long-term care institutions: a systematic review. Canadian Medical Association Journal, 160(3), 329–333.PubMedPubMedCentral Fox, P.L., Raina, P., & Jadad, A.R. (1999). Prevalence and treatment of pain in older adults in nursing homes and other long-term care institutions: a systematic review. Canadian Medical Association Journal, 160(3), 329–333.PubMedPubMedCentral
75.
go back to reference Thomas, E., Peat, G., Harris, L., Wilkie, R., & Croft, P.R. (2004). The prevalence of pain and pain interference in a general population of older adults: cross-sectional findings from the north staffordshire osteoarthritis project (NorStOP). Pain, 110(1–2), 361–368.CrossRefPubMed Thomas, E., Peat, G., Harris, L., Wilkie, R., & Croft, P.R. (2004). The prevalence of pain and pain interference in a general population of older adults: cross-sectional findings from the north staffordshire osteoarthritis project (NorStOP). Pain, 110(1–2), 361–368.CrossRefPubMed
76.
go back to reference Miro, J., Paredes, S., Rull, M., Queral, R., Miralles, R., Nieto, R., Huguet, A., & Baos, J. (2007). Pain in older adults: a prevalence study in the Mediterranean region of Catalonia. European Journal of Pain (London, England), 11(1), 83–92.CrossRef Miro, J., Paredes, S., Rull, M., Queral, R., Miralles, R., Nieto, R., Huguet, A., & Baos, J. (2007). Pain in older adults: a prevalence study in the Mediterranean region of Catalonia. European Journal of Pain (London, England), 11(1), 83–92.CrossRef
77.
go back to reference Havercamp, S.M., Scandlin, D., & Roth, M. (2004). Health disparities among adults with developmental disabilities, adults with other disabilities, and adults not reporting disability in North Carolina. Public Health Reports (Washington, D. C.: 1974), 119(4), 418–426.CrossRefPubMedCentral Havercamp, S.M., Scandlin, D., & Roth, M. (2004). Health disparities among adults with developmental disabilities, adults with other disabilities, and adults not reporting disability in North Carolina. Public Health Reports (Washington, D. C.: 1974), 119(4), 418–426.CrossRefPubMedCentral
78.
go back to reference Drum, C.E., Krahn, G., Cullley, C., & Hammond, L. (2005). Recognizing and responding to the health disparities of people with disabilities. California Journal of Health Promotion, 3(3), 29–42. Drum, C.E., Krahn, G., Cullley, C., & Hammond, L. (2005). Recognizing and responding to the health disparities of people with disabilities. California Journal of Health Promotion, 3(3), 29–42.
Metagegevens
Titel
Are intensive data collection methods in pain research feasible in those with physical disability? A study in persons with chronic pain and spinal cord injury
Auteurs
A. L. Kratz
C. Z. Kalpakjian
R. A. Hanks
Publicatiedatum
17-01-2017
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 3/2017
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-016-1494-0

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