Patient-reported outcomes (PROs) as a routine measure for cancer inpatients: the final missing piece of the puzzle?

Abstract

‘Who better than the patient to tell you whether the services we provide supply value or not?’ (Carolyn Kerrigan) In the course of the past four decades, health-related quality of life (HRQoL) has gained increasing importance in the context of a patient-centered care approach [1.Priestman T.J. Baum M. Evaluation of quality of life in patients receiving treatment for advanced breast cancer.Lancet. 1976; 1: 899-900Abstract PubMed Scopus (306) Google Scholar, 2.Spitzer W.O. Dobson A.J. Hall J. et al.Measuring the quality of life of cancer patients—a concise QL-Index for use by physicians.J Clin Epidemiol. 1981; 34: 585-597Google Scholar, 3.Aaronson N.K. Ahmedzai S. Bergman B. for the EORTC Study Group on Quality of Life et al.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. 1993; 85: 365-376Crossref PubMed Scopus (10322) Google Scholar, 4.Cella D. Chang C.H. 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Gibbons E. et al.How do patient reported outcome measures (PROMs) support clinician-patient communication and patient care? A realist synthesis.J Patient Rep Outcomes. 2018; 2: 42Crossref PubMed Scopus (137) Google Scholar]. How critically this patient-reported data are needed becomes even more evident, as Basch et al. [16.Basch E. Jia X. Heller G. et al.Adverse symptom event reporting by patients vs clinicians: relationships with clinical outcomes.J Natl Cancer Inst. 2009; 101: 1624-1632Crossref PubMed Scopus (385) Google Scholar, 17.Basch E. Barbera L. Kerrigan C.L. Velikova G. Implementation of patient-reported outcomes in routine medical care.Am Soc Clin Oncol Educ Book. 2018; 38: 122-134Crossref PubMed Scopus (123) Google Scholar] demonstrate, that ‘clinicians miss about half of their patients’ symptoms during treatment’. Since the implementation of PROs combined with patient-centered interventions has already shown to be associated with better HRQoL, with fewer hospitalizations and even increased survival compared with standard care [18.Basch E. Dueck A.C. Rogak L.J. et al.Feasibility assessment of patient reporting of symptomatic adverse events in multicenter cancer clinical trials.JAMA Oncol. 2017; 3: 1043-1050Crossref PubMed Scopus (71) Google Scholar, 19.Jordan K. Aapro M. Kaasa S. et al.European Society for Medical Oncology (ESMO) position paper on supportive and palliative care.Ann Oncol. 2018; 29: 36-43Abstract Full Text Full Text PDF PubMed Scopus (127) Google Scholar], these data collections and evaluations should be highly encouraged. As regards general acceptability of PROs with both patients and clinicians, it is crucial that their feasibility is ensured, e.g. by providing easy-to-use basic technology, or by developing general guidelines for PROs management. In their recent article, ‘Pilot Randomized Trial of an Electronic Symptom Monitoring Intervention for Hospitalized Patients with Cancer’, Nipp et al. [20.Nipp R.D. El-Jawahri A. Ruddy M. et al.Pilot randomized trial of an electronic symptom monitoring intervention for hospitalized patients with cancer.Ann Oncol. 2019; 30: 274-280Abstract Full Text Full Text PDF PubMed Scopus (27) Google Scholar] make a very important contribution to the field of symptom assessment and management for cancer patients. This paper investigates a clinically highly relevant issue, examining the feasibility and preliminary efficacy of an electronic symptom monitoring intervention for the first time in an inpatient setting. Patients were randomized either to the IMPROVED group (Improving Management of Patient-Reported Outcomes Via Electronic Data) or to the usual care group in order to compare results regarding symptom burden and healthcare utilization. Patients in both groups completed PROs but only the PROs of the IMPROVED group patients were presented to the clinicians. The latter patients’ symptom reports were presented graphically with alerts for moderate/severe symptoms during daily team hospital rounds so that interventions for a better symptom management could be planned immediately. The main results were that feasibility was confirmed and that the IMPROVED group had more days with lower psychological stress and lower readmission risk (the latter difference was not significant). Although this study might be criticized concerning some details (e.g. the rather small number of patients enrolled in the two groups and the even smaller number of those who met the requirements to be included in the data evaluation, as well as, the fact that it was a single-center study), this trial completed a project that establishes the basis for an improvement in the HRQoL for all cancer patients. This type of approach, if well integrated into the continuum of care program makes it obvious that patient-centered care can be improved via a standard framework. Having cancer inpatients complete (electronic) PROs on a regular basis seems to be a logical step toward the integration of the patient experience and perspective into ‘the heart of health research and decision-making’ [21.Crompton S. PROMs put patients at the heart of research and care.Cancerworld. 2018; 81: 54-60Google Scholar]. This is also an essential concern for researchers such as EORTC Director General Denis Lacombe, who is astonishingly outspoken in his demand that ‘outmoded research models, which are heavily driven by commercial interests […] need to be re-engineered to place patients at the centre’ [22.Lacombe D. Let’s be honest – our research centres on drugs not patients.Cancerworld. 2017/2018; 80: 33Google Scholar]. A recent study by Jenkins et al. [23.Jenkins V. Farewell V. May S. et al.Do drugs offering only PFS maintain quality of life sufficiently from a patient’s perspective? Results from AVALPROFS (Assessing the ‘VALue’ to patients of PROgression Free Survival) study.Support Care Cancer. 2018; 26: 3941-3949Crossref PubMed Scopus (5) Google Scholar] has come to the conclusion that patients with metastatic cancer who are treated with drugs aiming at cancer control no longer considered these drugs to be worthwhile when side-effect severity increased. These are pivotal observations that must be communicated between clinicians and patients, and this must be accessible to the other future patients who may be confronted with similar treatment decisions and benefit–risk assessments. There are, of course, also difficulties in the context of implementing PROs in routine clinical practice: there is, e.g. a wide variety of PROs lacking standardization and, thus, hampering comparability; apart from that, the use of the same PROs questionnaires in the context of different disease modalities or stages prevents interventions that are tailored to specific problems of the particular patient groups [14.Howell D. Molloy S. Wilkinson K. et al.Patient-reported outcomes in routine cancer clinical practice: a scoping review of use, impact on health outcomes, and implementation factors.Ann Oncol. 2015; 26: 1846-1858Abstract Full Text Full Text PDF PubMed Scopus (228) Google Scholar]. Moreover, in the future, therapy-regimen associated PROs should be a further step toward optimal toxicity management. This must include the necessity of minimizing patient burden by reducing the questions to a reasonable and meaningful minimum. But again we must stress that whatever the inherent problems or deficiencies, PROs are a crucial element in cancer care, not least because they may also basically improve the important communication between patient and clinician. As regards the study by Nipp et al., which has provided the springboard for this editorial, one might admit that it can indeed seem absurd, at first sight, to have inpatients complete PROs because clinicians require a method of direct communication. However, on the one hand, electronic symptom monitoring in the inpatient setting can probably be helpful because it facilitates the systematic, standardized documentation of symptoms and the implementation of symptom management strategies. On the other hand, the fact that the patient is confronted with a set of questions may trigger a more complex process of self-reflection that can result in an enhanced feeling of self-efficacy on the part of the patient. Moreover, it may help to encourage the sharing of information between city and hospital health caregivers and the patient. Greenhalgh et al. [15.Greenhalgh J. Gooding K. Gibbons E. et al.How do patient reported outcome measures (PROMs) support clinician-patient communication and patient care? A realist synthesis.J Patient Rep Outcomes. 2018; 2: 42Crossref PubMed Scopus (137) Google Scholar] underline: the completion of PROs ‘is not a neutral act of information retrieval but can change how patients think about their condition’. Thus, the inclusion of PROs on a regular basis for EVERY cancer patient is feasible, whether inpatient or outpatient and seems to be the logical key to individually planned symptom management or individual therapy decisions that the patient can confront with positive expectations.