Incongruence in treatment decision making is associated with lower health-related quality of life among prostate cancer survivors: results from the PiCTure study
We investigated associations between treatment decision making (TDM) and global health-related-quality-of-life (gHRQoL) among prostate cancer (PCa) survivors.
Postal questionnaires were sent to 6559 PCa survivors 2–18 years post-diagnosis, identified through population-based cancer registries in Ireland. The Control Preference Scale was used to investigate respondents’ ‘actual’ and ‘preferred’ role in TDM. The TDM experience was considered ‘congruent’ when actual and preferred roles matched and ‘incongruent’ otherwise. The EORTC QLQ-C30 was used to measure gHRQoL. Multivariate linear regression was employed to investigate associations between (i) actual role in TDM, (ii) congruence in TDM, and gHRQoL.
The response rate was 54% (n = 3348). The percentages of men whose actual role in TDM was active, shared or passive were 36, 33 and 31%, respectively. Congruence between actual and preferred roles in TDM was 58%. Actual role in TDM was not associated with gHRQoL. In multivariate analysis, after adjusting for socio-demographic and clinical factors, survivors whose TDM experience was incongruent had significantly lower gHRQoL than those who had a congruent experience (− 2.25 95%CI − 4.09, − 0.42; p = 0.008). This effect was most pronounced among survivors who had more involvement in the TDM than they preferred (− 2.69 95%CI − 4.74, − 0.63; p = 0.010).
Less than 6 in 10 PCa survivors experienced congruence between their actual and preferred roles in TDM. Having an incongruent TDM experience was associated with lower gHRQoL among survivors. These findings suggest that involving patients in TDM to the degree to which they want to be involved may help improve PCa survivors’ gHRQoL.
KeywordsTreatment decision making Prostate cancer Health-related quality of life Survivors Treatment Adverse effects
This work was supported by Health Research Board in the Republic of Ireland (RoI) and by Prostate Cancer UK and Research & Development office of Public health Agency in Northern Ireland. Additional funding was provided by the National Cancer Control Programme (RoI). The authors would like to thank the healthcare professionals who helped to screen the men for eligibility and those who cooperated in obtaining ethical approval. We would like to thank the Men Against Cancer support group, all those who commented on the survey during development and those who pre-tested it. Finally, we would like to thank the men who completed the survey.
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflict of interest.
- 1.Siegel R, DeSantis C, Virgo K, Stein K, Mariotto A, Smith T, Cooper D, Gansler T, Lerro C, Fedewa S, Lin C, Leach C, Cannady RS, Cho H, Scoppa S, Hachey M, Kirch R, Jemal A, Ward E (2012) Cancer treatment and survivorship statistics, 2012. CA Cancer J Clin 62(4):220–241. https://doi.org/10.3322/caac.21149 CrossRefPubMedGoogle Scholar
- 2.Sooriakumaran P, Nyberg T, Akre O, Haendler L, Heus I, Olsson M, Carlsson S, Roobol MJ, Steineck G, Wiklund P (2014) Comparative effectiveness of radical prostatectomy and radiotherapy in prostate cancer: observational study of mortality outcomes. BMJ 348:g1502. https://doi.org/10.1136/bmj.g1502 CrossRefPubMedPubMedCentralGoogle Scholar
- 3.Bill-Axelson A, Holmberg L, Garmo H, Rider JR, Taari K, Busch C, Nordling S, Häggman M, Andersson SO, Spångberg A, Andrén O, Palmgren J, Steineck G, Adami HO, Johansson JE (2014) Radical prostatectomy or watchful waiting in early prostate cancer. N Engl J Med 370(10):932–942. https://doi.org/10.1056/NEJMoa1311593 CrossRefPubMedPubMedCentralGoogle Scholar
- 4.Wilt TJ, Brawer MK, Jones KM, Barry MJ, Aronson WJ, Fox S, Gingrich JR, Wei JT, Gilhooly P, Grob BM, Nsouli I, Iyer P, Cartagena R, Snider G, Roehrborn C, Sharifi R, Blank W, Pandya P, Andriole GL, Culkin D, Wheeler T, Prostate Cancer Intervention versus Observation Trial (PIVOT) Study Group (2012) Radical prostatectomy versus observation for localized prostate cancer. N Engl J Med 367(3):203–213. https://doi.org/10.1056/NEJMoa1113162 CrossRefPubMedPubMedCentralGoogle Scholar
- 14.Jang TL, Bekelman JE, Liu Y, Bach PB, Basch EM, Elkin EB, Zelefsky MJ, Scardino PT, Begg CB, Schrag D (2010) Physician visits prior to treatment for clinically localized prostate cancer. Arch Intern Med 170(5):440–450. https://doi.org/10.1001/archinternmed.2010.1 CrossRefPubMedPubMedCentralGoogle Scholar
- 18.Lantz PM, Janz NK, Fagerlin A, Schwartz K, Liu L, Lakhani I, Salem B, Katz SJ (2005) Satisfaction with surgery outcomes and the decision process in a population-based sample of women with breast cancer. Health Serv Res 40(3):745–767. https://doi.org/10.1111/j.1475-6773.2005.00383.x CrossRefPubMedPubMedCentralGoogle Scholar
- 19.Ashraf AA, Colakoglu S, Nguyen JT, Anastasopulos AJ, Ibrahim AM, Yueh JH, Lin SJ, Tobias AM, Lee BT (2013) Patient involvement in the decision-making process improves satisfaction and quality of life in post-mastectomy breast reconstruction. J Surg Res 184(1):665–670. https://doi.org/10.1016/j.jss.2013.04.057 CrossRefPubMedGoogle Scholar
- 23.Orom H, Biddle C, Underwood W 3rd, Nelson CJ, Homish DL (2016) What Is a "Good" Treatment Decision? Decisional Control, Knowledge, Treatment Decision Making, and Quality of Life in Men with Clinically Localized Prostate Cancer. Med Decis Mak 36(6):714–725. https://doi.org/10.1177/0272989X16635633 CrossRefGoogle Scholar
- 27.Drummond FJ, Kinnear H, Donnelly C, O'Leary E, O'Brien K, Burns RM, Gavin A, Sharp L (2015) Establishing a population-based patient-reported outcomes study (PROMs) using national cancer registries across two jurisdictions: the Prostate Cancer Treatment, your experience (PiCTure) study. BMJ Open 5(4):e006851. https://doi.org/10.1136/bmjopen-2014-006851 CrossRefPubMedPubMedCentralGoogle Scholar
- 28.WMA Declaration of Helsinki - Ethical Principles for Medical Research Involving Human Subjects. http://www.wma.net/en/30publications/10policies/b3
- 30.Singh JA, Sloan JA, Atherton PJ, Smith T, Hack TF, Huschka MM, Rummans TA, Clark MM, Diekmann B, Degner LF (2010) Preferred roles in treatment decision making among patients with cancer: a pooled analysis of studies using the Control Preferences Scale. Am J Manag Care 16(9):688–696PubMedPubMedCentralGoogle Scholar
- 32.Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, Filiberti A, Flechtner H, Fleishman SB, de Haes JC et al (1993) The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 85(5):365–376. https://doi.org/10.1093/jnci/85.5.365 CrossRefPubMedGoogle Scholar
- 37.Drummond FJ, Kinnear H, O'Leary E, Donnelly GA, Sharp L (2015) Long-term health-related quality of life of prostate cancer survivors varies by primary treatment. Results from the PiCTure (Prostate Cancer Treatment, your experience) study. J Cancer Surviv 9(2):361–372. https://doi.org/10.1007/s11764-014-0419-6 CrossRefPubMedGoogle Scholar
- 39.Street RL Jr, Gordon HS, Ward MM, Krupat E, Kravitz RL (2005) Patient participation in medical consultations: why some patients are more involved than others. Med Care 43(10):960–969. https://doi.org/10.1097/01.mlr.0000178172.40344.70 CrossRefPubMedGoogle Scholar
- 40.Holmes-Rovner M, Montgomery JS, Rovner DR, Scherer LD, Whitfield J, Kahn VC, Merkle EC, Ubel PA, Fagerlin A (2015) Informed decision making: assessment of the quality of physician communication about prostate cancer diagnosis and treatment. Med Decis Mak 35(8):999–1009. https://doi.org/10.1177/0272989X15597226 CrossRefGoogle Scholar
- 45.Stacey D, Légaré F, Lewis K, Barry MJ, Bennett CL, Eden KB, Holmes-Rovner M, Llewellyn-Thomas H, Lyddiatt A, Thomson R, Trevena L (2017) Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 4:CD001431. https://doi.org/10.1002/14651858.CD001431.pub5 PubMedGoogle Scholar