Optimizing QOL Assessments Requires Multiple Patient-Reported Outcomes Measures


There is no one-size-fits-all approach to establishing patient-reported outcome measures, according to Hayley Beer, RN.

Hayley Beer, RN

Hayley Beer, RN

No single patient-reported outcome measure (PROM) fully captures the wide range of concerns that patients with multiple myeloma may hold, according to Hayley Beer, RN. However, patients appreciate the reflective nature of PROM assessments and are willing to complete them if it will help others.1

“We found [that patients] were giving responses even if they did not feel that the tool was appropriate for them, but might suit someone else,” Beer, a clinical nurse consultant at the Peter MacCallum Cancer Centre , said in a presentation during the International Myeloma Society’s 6th Annual Nursing Symposium. “They did not want to discount anything in case they missed an opportunity for one of their fellow patients.”

Key Findings

According to a series of semi-structured, telephone-based interviews, assessments used to categorize patient quality of life (QOL) are easy to understand for most patients. Results showed that 42% of respondents (n = 26) stated that they are willing to spend 40 to 60 minutes completing these assessments and are willing to complete a median number of 5 assessments, with the goal of helping improve care for their fellow patients. Respondents shared that they were fine with both paper and electronic forms and noted that time allotted for to completion was a concern, depending on where they were in their treatment cycle.

Beer acknowledged that the overall findings were mixed; some noted that PROMs invited negative thoughts or triggered anxieties. Other responders shared that they wanted PROMs to include positive questions highlighting their strength and resilience. At the same time, feedback showed that patients enjoy the reflective practice of completing the PROMs and that the process can serve to validate their feelings–especially if they feel that their provider had been dismissive. Other patients noted that the Functional Assessment of Cancer Therapy – Multiple Myeloma (FACT MM) and the Myeloma Patient Outcome Scale (MY-POS) Impairment Questionnaire address questions of intimacy, sex, and social well-being. This was a positive inclusion with respondents who felt it afforded them an opportunity to address critical issues which are often overlooked in routine clinical visits.

Overall, patients ranked the MyPOS, the Brief Fatigue Inventory, and the Comprehensive Score for Financial Toxicity-Functional Assessment of Chronic Illness Therapy (COST FACIT) as their top 3 favorable assessments. MyPOS was especially favored because of its interactivity and open-ended design.

“The open answer was fantastic,” a patient responded. “I liked that I got to personalize what was important to me and express these concerns in my own words and also rate them.”

Another shared the following feedback: “I appreciated question 1–it made me reflect and think about what the main issues were.”

“I really liked that it was interactive rather than just box-ticking,” another patient said.

Behind The Findings

Beer explained that despite a growing number of assessments designed to collect patient-reported outcomes (PROs), limited data exist highlighting which PROMS are of the greatest value to patients.

In 2022, Efficace et al completed a systematic review of PRO data reported in 32 randomized clinical trials that enrolled patients with multiple myeloma between 2014 and 2021. None of the trials provided data regarding patient preference with assessment tools.2

In light of a global shift toward value-based care, investigators hypothesized it would be fruitful to query patients about their preferences in responding to QOL assessments. Their goal is to minimize the patient burden and to avoid the repetition of themes so that patients do not lose motivation for these tasks.

Investigators asked participants to rate the tools based on their value. Selected tools included MyPOS, COST FACIT, Supportive Care Needs Survey, FACT MM, European Organization for the Research and Treatment of Cancer (EORTC) Quality-of-Life Questionnaire, EORTC Myeloma Module, EuroQol-5 Dimension tool, and the Brief Fatigue Inventory. The identified 6 QOL domains as representing key interests to the patient were as follows: physical health; psychological health; practical and functional health; social relationships; spiritual health resilience; and information and health care support.

The study sought to enrolled 30 patients with multiple myeloma who had undergone at least 1 line of therapy. Responding patients were receiving a variety of treatment strategies, including lenalidomide (Revlimid), carfilzomib (Kyprolis), thalidomide (Thalomid), pomalidomide (Pomalyast), and bortezomib (Velcade). Almost all patients had undergone allogeneic stem cell transplant, and nearly a third were enrolled in a clinical trial.

In addition to value, participants were asked whether the tools addressed issues or aspects of QOL that were important to them, if there were questions in the tool which did not apply to their experience, and whether the tool should be included in a QOL study. They were also asked to describe the maximum number of tools they would fill it at any 1 timepoint, the acceptable length of time to spend completing tools, the collection of tools they felt most adequately measure QOL, and if they preferred paper or electronic tools.

Overall, 58% of patients reported that each PROM fails to address 1 key quality of life element. According to investigators, this emphasized that there is no one-size-fits all PROM solution. Moreover, patients identified a lack of questions surrounding long-term adverse effects and few efforts to involve caregivers in PROs.

However, patients shared that the PROMs are valuable and they appreciated being able to voice what matters most to them. As the treatment landscape across tumor types continues to expand, investigators will need to be selective in choosing PROMS, so as to provide a clear picture of a patient’s QOL without overburdening them.

“We had an overwhelming sense of appreciation from the participants that somebody was interested in their QOL and how that was impacted by their treatment,” Beer summarized. “Not one single PROM fully captured the wide range of concern, so there does need to be more than one tool [used in future assessments]. QOL assessment should be comprehensive, but not burdensome… consumer engagement is paramount to ensure that we are capturing what matters most to patients.”

Investigators plan to use these findings to design a clinical trial assessing bortezomib, lenalidomide and dexamethasone in transplant-ineligible patients with multiple myeloma.


  1. Beer H. Moving toward value-based care. Engaging myeloma patients in the selection of patient reported outcome measures. Presented at: 19th International Myeloma Society Annual Meeting; August 25-27, 2022; Los Angeles, CA. NS-002.
  2. Efficace F, Cottone F, Sparano F, Caocci G, Vignetti M, Chakraborty R. Patient-reported outcomes in randomized controlled trials of patients with multiple myeloma: a systematic literature review of studies published between 2014 and 2021. Clin Lymphoma Myeloma Leuk. 2022;22(7):442-459. doi:10.1016/j.clml.2022.01.009

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