Implementing patient-reported outcomes into routine care: an audit of cancer patients from two local health districts in New South Wales to understand their capabilities and preferences
Adeola Bamgboje-Ayodele
A B E , Belinda Arnold C , Ivana Durcinoska A , Sandra Avery A B D , Shalini Vinod A B D , Orlando Rincones A , Tien Thomas D , Joseph Descallar A B , Ben Smith A B , Geoff P Delaney A B D and Afaf Girgis A B *
A Ingham Institute for Applied Medical Research, Liverpool, NSW 1871, Australia.
B South Western Sydney Clinical School, UNSW Medicine and Health, UNSW Sydney, Kensington, NSW 2052, Australia.
C Wollongong Hospital, Illawarra Shoalhaven Local Health District, Wollongong, NSW 2500, Australia.
D Liverpool Cancer Therapy Centre, Liverpool Hospital, South Western Sydney Local Health District, Liverpool, NSW 1871, Australia.
E Present address: Faculty of Medicine and Health, School of Medical Sciences, Biomedical Informatics and Digital Health, The University of Sydney, Camperdown, NSW 2006, Australia.
Australian Health Review 46(3) 331-337 https://doi.org/10.1071/AH21270
Submitted: 24 August 2021 Accepted: 3 March 2022 Published: 12 May 2022
© 2022 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of AHHA.
Abstract
Objective It has been established that the implementation of patient-reported outcome measures (PROMs) in routine care provides significant benefits to patients, providers and health services. However, there are patient-level barriers that must be identified and addressed for the successful implementation of PROMs. This study aimed to understand the capabilities and preferences of our cancer patient population prior to implementation of electronically collected PROMs (ePROMs). Specifically, we conducted a clinic audit to determine the proportion of patients in clinics with access to out-of-clinic internet; those preferring to complete PROMs on paper or via an electronic device; those capable of completing PROMs in English; and those anticipating requiring assistance to complete PROMs.
Methods Patients receiving cancer treatment or follow-up care at two Local Health Districts (LHDs) in New South Wales, Australia, completed a questionnaire (audit form) with items about internet and mobile access, communication preferences and assistance needed to complete PROMs. Participant demographic and treatment information were extracted from their electronic medical records.
Results Across both LHDs, 637 of 1668 participants (38%) completed the audit forms. Mean participant age was 65 years (range = 23–98), 53% were female, and 92% were outpatients. Patients in the two LHDs differed in their levels of internet and email access, and ability to complete PROMs independently in English, suggesting that some LHD-specific tailoring of implementation strategies is necessary to optimise ePROMs uptake.
Conclusion This study highlights the importance of understanding the specific local contexts and patient populations, including potential technology and language barriers, which can influence patient ability to complete ePROMs.
Keywords: cancer, clinic audit, electronic patient reported outcomes, ePROs, implementation, PROM, routine care.
References
[1] Koczwara B, Bonnamy J, Briggs P, et al. Patient‐reported outcomes and personalised cancer care. Med J Aus 2020; 214 406–408.| Patient‐reported outcomes and personalised cancer care.Crossref | GoogleScholarGoogle Scholar |
[2] Chen J, Ou L, Hollis SJ. A systematic review of the impact of routine collection of patient reported outcome measures on patients, providers and health organisations in an oncologic setting. BMC Health Serv Res 2013; 13 211
| A systematic review of the impact of routine collection of patient reported outcome measures on patients, providers and health organisations in an oncologic setting.Crossref | GoogleScholarGoogle Scholar | 23758898PubMed |
[3] Velikova G, Booth L, Smith AB, et al. Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. J Clin Onc 2004; 22 714–724.
| Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial.Crossref | GoogleScholarGoogle Scholar |
[4] Basch E, Deal AM, Kris MG, et al. Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Onc 2016; 34 557–565.
| Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial.Crossref | GoogleScholarGoogle Scholar |
[5] Denis F, Viger L, Charron A, Voog E, Letellier C. Detecting lung cancer relapse using self-evaluation forms weekly filled at home: the sentinel follow-up. Support Care Cancer 2014; 22 79–85.
| Detecting lung cancer relapse using self-evaluation forms weekly filled at home: the sentinel follow-up.Crossref | GoogleScholarGoogle Scholar | 23995815PubMed |
[6] Barbera L, Sutradhar R, Howell D, et al. Does routine symptom screening with ESAS decrease ED visits in breast cancer patients undergoing adjuvant chemotherapy? Support Care Cancer 2015; 23 3025–3032.
| Does routine symptom screening with ESAS decrease ED visits in breast cancer patients undergoing adjuvant chemotherapy?Crossref | GoogleScholarGoogle Scholar | 25711657PubMed |
[7] Basch E, Deal AM, Dueck AC. Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment. JAMA 2017; 318 197–198.
| Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment.Crossref | GoogleScholarGoogle Scholar | 28586821PubMed |
[8] Girgis A, Durcinoska I, Arnold A, et al. Web-based patient-reported outcome measures for personalized treatment and care (PROMPT-Care): Multicenter Pragmatic Nonrandomized Trial. J Med Internet Res 2020; 22 e19685
| Web-based patient-reported outcome measures for personalized treatment and care (PROMPT-Care): Multicenter Pragmatic Nonrandomized Trial.Crossref | GoogleScholarGoogle Scholar | 33118954PubMed |
[9] Denis F, Lethrosne C, Pourel N. Randomized trial comparing a web-mediated follow-up with routine surveillance in lung cancer patients. JNCI 2017; 109 djx029
| Randomized trial comparing a web-mediated follow-up with routine surveillance in lung cancer patients.Crossref | GoogleScholarGoogle Scholar |
[10] Girgis A, Delaney GP, Miller AA. Utilising ehealth to support survivorship care. Cancer Forum 2015; 39 86–89.
[11] Girgis A, Durcinoska I, Levesque JV, et al. eHealth system for collecting and utilizing patient reported outcome measures for personalized treatment and care (PROMPT-Care) among cancer patients: mixed methods approach to evaluate feasibility and acceptability. J Med Internet Res 2017; 19 e330
| eHealth system for collecting and utilizing patient reported outcome measures for personalized treatment and care (PROMPT-Care) among cancer patients: mixed methods approach to evaluate feasibility and acceptability.Crossref | GoogleScholarGoogle Scholar | 28970188PubMed |
[12] Anatchkova M, Donelson SM, Skalicky AM, McHorney CA, Jagun D, Whiteley J. Exploring the implementation of patient-reported outcome measures in cancer care: need for more real-world evidence results in the peer reviewed literature. J Pat-Reported Outcomes 2018; 2 64
| Exploring the implementation of patient-reported outcome measures in cancer care: need for more real-world evidence results in the peer reviewed literature.Crossref | GoogleScholarGoogle Scholar |
[13] Nguyen H, Butow P, Dhillon H, Sundaresan P. A review of the barriers to using Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs) in routine cancer care. J Med Radiat Sci 2020; 68 186–195.
| A review of the barriers to using Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs) in routine cancer care.Crossref | GoogleScholarGoogle Scholar | 32815314PubMed |
[14] New South Wales Government. South Western Sydney Local Health District Strategic Plan. Liverpool, NSW; 2020. Available at https://www.swslhd.health.nsw.gov.au/pdfs/2018-StratPlan.pdf
[15] New South Wales Government. Strategic Direction for Illawarra Shoalhaven Local Health District: 2017–2020. Illawarra, NSW; 2017. Available at https://www.islhd.health.nsw.gov.au/sites/default/files/Health%20Plans/ISLHDStrategicDirections.pdf
[16] Queensland Government. Accessibility/Remoteness Index of Australia. 2019. Available at https://www.qgso.qld.gov.au/about-statistics/statistical-standards-classifications/accessibility-remoteness-index-australia
[17] Foster A, Croot L, Brazier J, Harris J, O’Cathain A. The facilitators and barriers to implementing patient reported outcome measures in organisations delivering health related services: a systematic review of reviews. J Pat-Reported Outcomes 2018; 2 46
| The facilitators and barriers to implementing patient reported outcome measures in organisations delivering health related services: a systematic review of reviews.Crossref | GoogleScholarGoogle Scholar |
[18] Potdar R, Thomas A, DiMeglio M, et al. Access to internet, smartphone usage, and acceptability of mobile health technology among cancer patients. Support Care Cancer 2020; 28 5455–5461.
| Access to internet, smartphone usage, and acceptability of mobile health technology among cancer patients.Crossref | GoogleScholarGoogle Scholar | 32166381PubMed |
[19] Ebel M-D, Stellamanns J, Keinki C, Rudolph I, Huebner J. Cancer patients and the internet: a survey among german cancer patients. J Cancer Educ 2017; 32 503–508.
| Cancer patients and the internet: a survey among german cancer patients.Crossref | GoogleScholarGoogle Scholar | 26553327PubMed |
[20] Greenberg AJ, Haney D, Blake KD, Moser RP, Hesse BW. Differences in access to and use of electronic personal health information between rural and urban residents in the United States. J Rural Health 2018; 34 s30–s38.
| Differences in access to and use of electronic personal health information between rural and urban residents in the United States.Crossref | GoogleScholarGoogle Scholar | 28075508PubMed |
[21] Fareed N, Swoboda CM, Jonnalagadda P, Huerta TR. Persistent digital divide in health-related internet use among cancer survivors: findings from the Health Information National Trends Survey, 2003–2018. J Cancer Surv 2021; 15 87–98.
| Persistent digital divide in health-related internet use among cancer survivors: findings from the Health Information National Trends Survey, 2003–2018.Crossref | GoogleScholarGoogle Scholar |
[22] Australian Bureau of Statistics. Data by region. Canberra, Australia; 2021. Available at https://dbr.abs.gov.au/region.html?lyr=sa4&rgn=127
[23] Campbell N, Ali F, Finlay AY, Salek SS. Equivalence of electronic and paper-based patient-reported outcome measures. Qual Life Res 2015; 24 1949–1961.
| Equivalence of electronic and paper-based patient-reported outcome measures.Crossref | GoogleScholarGoogle Scholar | 25702266PubMed |
[24] Baeksted C, Pappot H, Nissen A, et al. Feasibility and acceptability of electronic symptom surveillance with clinician feedback using the Patient-Reported Outcomes version of Common Terminology Criteria for Adverse Events (PRO-CTCAE) in Danish prostate cancer patients. J Pat-Reported Outcomes 2017; 1 1–11.
| Feasibility and acceptability of electronic symptom surveillance with clinician feedback using the Patient-Reported Outcomes version of Common Terminology Criteria for Adverse Events (PRO-CTCAE) in Danish prostate cancer patients.Crossref | GoogleScholarGoogle Scholar |
[25] Solk P, Gavin K, Fanning J, et al. Feasibility and acceptability of intensive longitudinal data collection of activity and patient-reported outcomes during chemotherapy for breast cancer. Qual Life Res 2019; 28 3333–3346.
| Feasibility and acceptability of intensive longitudinal data collection of activity and patient-reported outcomes during chemotherapy for breast cancer.Crossref | GoogleScholarGoogle Scholar | 31493269PubMed |
[26] Bæksted C, Nissen A, Pappot H, et al. Danish Translation and Linguistic Validation of the U.S. National Cancer Institute’s Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). J Pain Symptom Manage 2016; 52 292–297.
| Danish Translation and Linguistic Validation of the U.S. National Cancer Institute’s Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE).Crossref | GoogleScholarGoogle Scholar | 27090851PubMed |
[27] Grant SR, Noticewala SS, Mainwaring W, et al. Non-English language validation of patient-reported outcome measures in cancer clinical trials. Support Care Cancer 2020; 28 2503–2505.
| Non-English language validation of patient-reported outcome measures in cancer clinical trials.Crossref | GoogleScholarGoogle Scholar | 32189098PubMed |
