Skip to main content
main-content
Top

Tip

Swipe om te navigeren naar een ander artikel

Gepubliceerd in: Quality of Life Research 7/2018

18-04-2018 | Brief Communication

Importance ratings on patient-reported outcome items for survivorship care: comparison between pediatric cancer survivors, parents, and clinicians

Auteurs: Conor M. Jones, Justin N. Baker, Rachel M. Keesey, Ruth J. Eliason, Jennifer Q. Lanctot, Jennifer L. Clegg, Belinda N. Mandrell, Kirsten K. Ness, Kevin R. Krull, Deokumar Srivastava, Christopher B. Forrest, Melissa M. Hudson, Leslie L. Robison, I-Chan Huang

Gepubliceerd in: Quality of Life Research | Uitgave 7/2018

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Abstract

Purpose

To compare importance ratings of patient-reported outcomes (PROs) items from the viewpoints of childhood cancer survivors, parents, and clinicians for further developing short-forms to use in survivorship care.

Methods

101 cancer survivors, 101 their parents, and 36 clinicians were recruited from St. Jude Children’s Research Hospital. Participants were asked to select eight items that they deemed useful for clinical decision making from each of the four Patient-Reported Outcomes Measurement Information System Pediatric item banks. These item banks were pain interference (20 items), fatigue (23 items), psychological stress (19 items), and positive affect (37 items).

Results

Compared to survivors, clinicians rated more items across four domains that were statistically different than did parents (23 vs. 13 items). Clinicians rated five items in pain interference domain (ORs 2.33–6.01; p’s < 0.05) and three items in fatigue domain (ORs 2.22–3.80; p’s < .05) as more important but rated three items in psychological stress domain (ORs 0.14–0.42; p’s < .05) and six items in positive affect domain (ORs 0.17–0.35; p’s < .05) as less important than did survivors. In contrast, parents rated seven items in positive affect domain (ORs 0.25–0.47; p’s < .05) as less important than did survivors.

Conclusions

Survivors, parents, and clinicians viewed importance of PRO items for survivorship care differently. These perspectives should be used to assist the development of PROs tools.
Bijlagen
Alleen toegankelijk voor geautoriseerde gebruikers
Literatuur
1.
go back to reference American Cancer Society (2014). Special section: Childhood & adolescent cancers. In American cancer society, cancer facts & figures 2014 (pp. 25–42). Atlanta, GA: American Cancer Society. American Cancer Society (2014). Special section: Childhood & adolescent cancers. In American cancer society, cancer facts & figures 2014 (pp. 25–42). Atlanta, GA: American Cancer Society.
2.
go back to reference Klassen, A. F., Anthony, S. J., Khan, A., Sung, L., & Klaassen, R. (2011). Identifying determinants of quality of life of children with cancer and childhood cancer survivors: A systematic review. Supportive Care Cancer, 19(9), 1275–1287. CrossRef Klassen, A. F., Anthony, S. J., Khan, A., Sung, L., & Klaassen, R. (2011). Identifying determinants of quality of life of children with cancer and childhood cancer survivors: A systematic review. Supportive Care Cancer, 19(9), 1275–1287. CrossRef
3.
go back to reference Cella, D., Yount, S., Rothrock, N., Gershon, R., Cook, K., Reeve, B., et al. (2007). The Patient-Reported Outcomes Measurement Information System (PROMIS): Progress of an NIH Roadmap cooperative group during its first two years. Medical Care, 45(5 Suppl 1), S3–S11. Cella, D., Yount, S., Rothrock, N., Gershon, R., Cook, K., Reeve, B., et al. (2007). The Patient-Reported Outcomes Measurement Information System (PROMIS): Progress of an NIH Roadmap cooperative group during its first two years. Medical Care, 45(5 Suppl 1), S3–S11.
4.
go back to reference Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., et al. (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., et al. (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
5.
go back to reference Hinds, P. S., Nuss, S. L., Ruccione, K. S., Withycombe, J. S., Jacobs, S., DeLuca, H., et al. (2013). PROMIS pediatric measures in pediatric oncology: Valid and clinically feasible indicators of patient-reported outcomes. Pediatric Blood Cancer, 60(3), 402–408. CrossRefPubMed Hinds, P. S., Nuss, S. L., Ruccione, K. S., Withycombe, J. S., Jacobs, S., DeLuca, H., et al. (2013). PROMIS pediatric measures in pediatric oncology: Valid and clinically feasible indicators of patient-reported outcomes. Pediatric Blood Cancer, 60(3), 402–408. CrossRefPubMed
6.
go back to reference DeWalt, D. A., Gross, H. E., Gipson, D. S., Selewski, D. T., DeWitt, E. M., Dampier, C. D., et al. (2015). PROMIS((R)) pediatric self-report scales distinguish subgroups of children within and across six common pediatric chronic health conditions. Quality of Life Research, 24(9), 2195–2208. CrossRefPubMedPubMedCentral DeWalt, D. A., Gross, H. E., Gipson, D. S., Selewski, D. T., DeWitt, E. M., Dampier, C. D., et al. (2015). PROMIS((R)) pediatric self-report scales distinguish subgroups of children within and across six common pediatric chronic health conditions. Quality of Life Research, 24(9), 2195–2208. CrossRefPubMedPubMedCentral
7.
go back to reference Menard, J. C., Hinds, P. S., Jacobs, S. S., Cranston, K., Wang, J., DeWalt, D. A., & Gross, H. E. (2014). Feasibility and acceptability of the patient-reported outcomes measurement information system measures in children and adolescents in active cancer treatment and survivorship. Cancer Nursing, 37(1), 66–74. CrossRefPubMed Menard, J. C., Hinds, P. S., Jacobs, S. S., Cranston, K., Wang, J., DeWalt, D. A., & Gross, H. E. (2014). Feasibility and acceptability of the patient-reported outcomes measurement information system measures in children and adolescents in active cancer treatment and survivorship. Cancer Nursing, 37(1), 66–74. CrossRefPubMed
8.
go back to reference Matza, L. S., Patrick, D. L., Riley, A. W., Alexander, J. J., Rajmil, L., Pleil, A. M., & Bullinger, M. (2013). Pediatric patient-reported outcome instruments for research to support medical product labeling: Report of the ISPOR PRO good research practices for the assessment of children and adolescents task force. Value in Health, 16(4), 461–479. CrossRefPubMed Matza, L. S., Patrick, D. L., Riley, A. W., Alexander, J. J., Rajmil, L., Pleil, A. M., & Bullinger, M. (2013). Pediatric patient-reported outcome instruments for research to support medical product labeling: Report of the ISPOR PRO good research practices for the assessment of children and adolescents task force. Value in Health, 16(4), 461–479. CrossRefPubMed
9.
go back to reference Basch, E., Spertus, J., Dudley, R. A., Wu, A., Chuahan, C., Cohen, P., et al. (2015). Methods for developing patient-reported outcome-based performance measures (PRO-PMs). Value in Health, 18(4), 493–504. CrossRefPubMed Basch, E., Spertus, J., Dudley, R. A., Wu, A., Chuahan, C., Cohen, P., et al. (2015). Methods for developing patient-reported outcome-based performance measures (PRO-PMs). Value in Health, 18(4), 493–504. CrossRefPubMed
10.
go back to reference Huang, I. C., Shenkman, E. A., Leite, W., Knapp, C. A., Thompson, L. A., & Revicki, D. A. (2009). Agreement was not found in adolescents’ quality of life rated by parents and adolescents. Journal of Clinical Epidemiology, 62(3), 337–346. CrossRefPubMed Huang, I. C., Shenkman, E. A., Leite, W., Knapp, C. A., Thompson, L. A., & Revicki, D. A. (2009). Agreement was not found in adolescents’ quality of life rated by parents and adolescents. Journal of Clinical Epidemiology, 62(3), 337–346. CrossRefPubMed
11.
go back to reference Upton, P., Lawford, J., & Eiser, C. (2008). Parent-child agreement across child health-related quality of life instruments: A review of the literature. Quality of Life Research, 17(6), 895–913. CrossRefPubMed Upton, P., Lawford, J., & Eiser, C. (2008). Parent-child agreement across child health-related quality of life instruments: A review of the literature. Quality of Life Research, 17(6), 895–913. CrossRefPubMed
12.
go back to reference Russell, K. M., Hudson, M., Long, A., & Phipps, S. (2006). Assessment of health-related quality of life in children with cancer: Consistency and agreement between parent and child reports. Cancer, 106(10), 2267–2274. CrossRefPubMed Russell, K. M., Hudson, M., Long, A., & Phipps, S. (2006). Assessment of health-related quality of life in children with cancer: Consistency and agreement between parent and child reports. Cancer, 106(10), 2267–2274. CrossRefPubMed
13.
go back to reference Waters, E. B., Wake, M. A., Hesketh, K. D., Ashley, D. M., & Smibert, E. (2003). Health-related quality of life of children with acute lymphoblastic leukaemia: Comparisons and correlations between parent and clinician reports. International Journal of Cancer, 103(4), 514–518. CrossRefPubMed Waters, E. B., Wake, M. A., Hesketh, K. D., Ashley, D. M., & Smibert, E. (2003). Health-related quality of life of children with acute lymphoblastic leukaemia: Comparisons and correlations between parent and clinician reports. International Journal of Cancer, 103(4), 514–518. CrossRefPubMed
14.
go back to reference Morrow, A. M., Hayen, A., Quine, S., Scheinberg, A., & Craig, J. C. (2012). A comparison of doctors’, parents’ and children’s reports of health states and health-related quality of life in children with chronic conditions. Child Care, Health and Development, 38(2), 186–195. CrossRefPubMed Morrow, A. M., Hayen, A., Quine, S., Scheinberg, A., & Craig, J. C. (2012). A comparison of doctors’, parents’ and children’s reports of health states and health-related quality of life in children with chronic conditions. Child Care, Health and Development, 38(2), 186–195. CrossRefPubMed
15.
go back to reference Forrest, C. B., Ravens-Sieberer, U., Devine, J., Becker, B. D., Teneralli, R. E., Moon, J., et al. (2018) Development and evaluation of the PROMIS pediatric positive affect item bank, child-report and parent-proxy editions. Journal of Happiness Studies, 19(3), 699–718. PubMedCrossRef Forrest, C. B., Ravens-Sieberer, U., Devine, J., Becker, B. D., Teneralli, R. E., Moon, J., et al. (2018) Development and evaluation of the PROMIS pediatric positive affect item bank, child-report and parent-proxy editions. Journal of Happiness Studies, 19(3), 699–718. PubMedCrossRef
16.
go back to reference Bevans, K. B., Gardner, W., Pajer, K., Riley, A. W., & Forrest, C. B. (2013). Qualitative development of the PROMIS(R) pediatric stress response item banks. Journal of Pediatric Psychology, 38(2), 173–191. CrossRefPubMed Bevans, K. B., Gardner, W., Pajer, K., Riley, A. W., & Forrest, C. B. (2013). Qualitative development of the PROMIS(R) pediatric stress response item banks. Journal of Pediatric Psychology, 38(2), 173–191. CrossRefPubMed
17.
go back to reference Varni, J. W., Stucky, B. D., Thissen, D., Dewitt, E. M., Irwin, D. E., Lai, J. S., Yeatts, K., & Dewalt, D. A. (2010). PROMIS Pediatric Pain Interference Scale: an item response theory analysis of the pediatric pain item bank. J Pain, 11(11), 1109–1119. CrossRefPubMedPubMedCentral Varni, J. W., Stucky, B. D., Thissen, D., Dewitt, E. M., Irwin, D. E., Lai, J. S., Yeatts, K., & Dewalt, D. A. (2010). PROMIS Pediatric Pain Interference Scale: an item response theory analysis of the pediatric pain item bank. J Pain, 11(11), 1109–1119. CrossRefPubMedPubMedCentral
18.
go back to reference Lai, J. S., Stucky, B. D., Thissen, D., Varni, J. W., DeWitt, E. M., Irwin, D. E., et al. (2013). Development and psychometric properties of the PROMIS((R)) pediatric fatigue item banks. Quality of Life Research, 22(9), 2417–2427. CrossRefPubMed Lai, J. S., Stucky, B. D., Thissen, D., Varni, J. W., DeWitt, E. M., Irwin, D. E., et al. (2013). Development and psychometric properties of the PROMIS((R)) pediatric fatigue item banks. Quality of Life Research, 22(9), 2417–2427. CrossRefPubMed
19.
go back to reference Collins, J. J., Byrnes, M. E., Dunkel, I. J., Lapin, J., Nadel, T., Thaler, H. T., et al. (2000). The measurement of symptoms in children with cancer. Journal of Pain and Symptom Management, 19(5), 363–377. CrossRefPubMed Collins, J. J., Byrnes, M. E., Dunkel, I. J., Lapin, J., Nadel, T., Thaler, H. T., et al. (2000). The measurement of symptoms in children with cancer. Journal of Pain and Symptom Management, 19(5), 363–377. CrossRefPubMed
20.
go back to reference Stuber, M. L., Meeske, K. A., Leisenring, W., Stratton, K., Zeltzer, L. K., Dawson, K., et al. (2011). Defining medical posttraumatic stress among young adult survivors in the Childhood Cancer Survivor Study. General Hospital Psychiatry, 33(4), 347–353. CrossRefPubMedPubMedCentral Stuber, M. L., Meeske, K. A., Leisenring, W., Stratton, K., Zeltzer, L. K., Dawson, K., et al. (2011). Defining medical posttraumatic stress among young adult survivors in the Childhood Cancer Survivor Study. General Hospital Psychiatry, 33(4), 347–353. CrossRefPubMedPubMedCentral
21.
go back to reference Spencer, D. (2009). Card sorting: Designing usable categories. Brooklyn, NY: Rosenfeld Media. Spencer, D. (2009). Card sorting: Designing usable categories. Brooklyn, NY: Rosenfeld Media.
22.
go back to reference DeWitt, E. M., Stucky, B. D., Thissen, D., Irwin, D. E., Langer, M., Varni, J. W., et al. (2011). Construction of the eight-item patient-reported outcomes measurement information system pediatric physical function scales: Built using item response theory. Journal of Clinical Epidemiology, 64(7), 794–804. CrossRefPubMedPubMedCentral DeWitt, E. M., Stucky, B. D., Thissen, D., Irwin, D. E., Langer, M., Varni, J. W., et al. (2011). Construction of the eight-item patient-reported outcomes measurement information system pediatric physical function scales: Built using item response theory. Journal of Clinical Epidemiology, 64(7), 794–804. CrossRefPubMedPubMedCentral
23.
go back to reference Irwin, D. E., Stucky, B., Langer, M. M., Thissen, D., Dewitt, E. M., Lai, J. S., et al. (2010). An item response analysis of the pediatric PROMIS anxiety and depressive symptoms scales. Quality of Life Research, 19(4), 595–607. CrossRefPubMedPubMedCentral Irwin, D. E., Stucky, B., Langer, M. M., Thissen, D., Dewitt, E. M., Lai, J. S., et al. (2010). An item response analysis of the pediatric PROMIS anxiety and depressive symptoms scales. Quality of Life Research, 19(4), 595–607. CrossRefPubMedPubMedCentral
24.
go back to reference Ravens-Sieberer, U., Devine, J., Bevans, K., Riley, A. W., Moon, J., Salsman, J. M., & Forrest, C. B. (2014). Subjective well-being measures for children were developed within the PROMIS project: Presentation of first results. Journal of Clinical Epidemiology, 67(2), 207–218. CrossRefPubMed Ravens-Sieberer, U., Devine, J., Bevans, K., Riley, A. W., Moon, J., Salsman, J. M., & Forrest, C. B. (2014). Subjective well-being measures for children were developed within the PROMIS project: Presentation of first results. Journal of Clinical Epidemiology, 67(2), 207–218. CrossRefPubMed
25.
go back to reference Yeatts, K. B., Stucky, B., Thissen, D., Irwin, D., Varni, J. W., DeWitt, E. M., et al. (2010). Construction of the Pediatric Asthma Impact Scale (PAIS) for the Patient-Reported Outcomes Measurement Information System (PROMIS). Journal of Asthma, 47(3), 295–302. CrossRefPubMed Yeatts, K. B., Stucky, B., Thissen, D., Irwin, D., Varni, J. W., DeWitt, E. M., et al. (2010). Construction of the Pediatric Asthma Impact Scale (PAIS) for the Patient-Reported Outcomes Measurement Information System (PROMIS). Journal of Asthma, 47(3), 295–302. CrossRefPubMed
Metagegevens
Titel
Importance ratings on patient-reported outcome items for survivorship care: comparison between pediatric cancer survivors, parents, and clinicians
Auteurs
Conor M. Jones
Justin N. Baker
Rachel M. Keesey
Ruth J. Eliason
Jennifer Q. Lanctot
Jennifer L. Clegg
Belinda N. Mandrell
Kirsten K. Ness
Kevin R. Krull
Deokumar Srivastava
Christopher B. Forrest
Melissa M. Hudson
Leslie L. Robison
I-Chan Huang
Publicatiedatum
18-04-2018
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 7/2018
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-018-1854-z