Who Are We Missing: Does Engagement in Patient-Reported Outcome Measures for Breast Cancer Vary by Age, Race, or Disease Stage?

Srour, Marissa K.; Tadros, Audree B; Sevilimedu, Varadan; Nelson, Jonas A.; Cracchiolo, Jennifer R.; McCready, Taylor; Silva, Nicholas; Moo, Tracy-Ann; Morrow, Monica

doi:10.1245/s10434-022-12477-1

Cited by 6 publications

(9 citation statements)

References 20 publications

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“…The current examination suggests that those whose primary language is not English, despite completing at least one of the other three BREAST‐Q domains, are less likely to complete Sexual Well‐being. Existing literature corroborates this claim, indicating that a significant proportion of minority patients' sexual health concerns may be disregarded 4,36,37 . For example, Ahlmark et al reported that content and language of questionnaires are barriers for immigrant and non‐Western descendants in responding to surveys 38 .…”

Section: Discussionmentioning

confidence: 90%

“…Existing literature corroborates this claim, indicating that a significant proportion of minority patients' sexual health concerns may be disregarded. 4,36,37 For example, Ahlmark et al reported that content and language of questionnaires are barriers for immigrant and non-Western descendants in responding to surveys. 38 Even if patients are familiar with English, but are not fluent, survey items may not be completely understood as intended due to cultural or religious contexts.…”

Section: Discussionmentioning

confidence: 99%

“…It can cause loss of power to detect change, under‐ or over‐estimate intervention effects, and lead to selection bias 5,6 . Recognizing missing data in PROs is essential to minimize nonresponse and selection bias and to augment available data 4,6 …”

Section: Introductionmentioning

confidence: 99%

“…There may be a significant proportion of patients with sexual dysfunction who go unnoticed because of missing data. It is critical to identify nonresponders in this patient population to ensure that all patients' sexual health concerns are sufficiently addressed, and that sexual health outcomes research is representative of all breast cancer patients 4 …”

Section: Introductionmentioning

confidence: 99%

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Nonresponse data in sexual well‐being among breast reconstruction patients—who are we overlooking?

Kim,

Vingan,

Boe

et al. 2024

Journal of Surgical Oncology

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BackgroundMissing data can affect the representativeness and accuracy of survey results, and sexual health‐related surveys are especially at a higher risk of nonresponse due to their sensitive nature and stigma. The purpose of this study was to evaluate the proportion of patients who do not complete the BREAST‐Q Sexual Well‐being relative to other BREAST‐Q modules and compare responders versus nonresponders of Sexual Well‐being. We secondarily examined variables associated with Sexual Well‐being at 1‐year.MethodsA retrospective analysis of patients who underwent breast reconstruction from January 2018 to December 2021 and completed any of the BREAST‐Q modules postoperatively at 1‐year was performed.ResultsThe 2941 patients were included. Of the four BREAST‐Q domains, Sexual Well‐being had the highest rate of nonresponse (47%). Patients who were separated (vs. married, OR = 0.69), whose primary language was not English (vs. English, OR = 0.60), and had Medicaid insurance (vs. commercial, OR = 0.67) were significantly less likely to complete the Sexual Well‐being. Postmenopausal patients were significantly more likely to complete the survey than premenopausal patients. Lastly, autologous reconstruction patients were 2.93 times more likely to respond than implant‐based reconstruction patients (p < 0.001) while delayed (vs. immediate, OR = 0.70, p = 0.022) and unilateral (vs. bilateral, OR = 0.80, p = 0.008) reconstruction patients were less likely to respond. History of psychiatric diagnosis, aromatase inhibitors, and immediate breast reconstruction were significantly associated with lower Sexual Well‐being at 1‐year.ConclusionSexual Well‐being is the least frequently completed BREAST‐Q domain, and there are demographic and clinical differences between responders and nonresponders. We encourage providers to recognize patterns in nonresponse data for Sexual‐Well‐being to ensure that certain patient population's sexual health concerns are not overlooked.

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Section: Discussionmentioning

confidence: 90%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Nonresponse data in sexual well‐being among breast reconstruction patients—who are we overlooking?

Kim,

Vingan,

Boe

et al. 2024

Journal of Surgical Oncology

Self Cite

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“…In this issue of Annals of Surgical Oncology, Dr. Srour and colleagues report their institutional experience utilizing two PROMs, the BREAST-Q and a Recovery Tracker, in clinical practice at Memorial Sloan Kettering Cancer Center. 7 PROMs were sent to 6,374 consecutive patients having breast surgery via the electronic health record. The response rate was 89% for response to either PROM (92% for BREAST-Q and 82% for Recovery Tracker).…”

mentioning

confidence: 99%

Recognizing Disparities in Breast Cancer Patient-Reported Outcome Measures

Kantor

Dominici

2022

Ann Surg Oncol

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Missingness mechanisms and generalizability of patient reported outcome measures in colorectal cancer survivors – assessing the reasonableness of the “missing completely at random” assumption

Lyhne,

Smith,

Jensen

et al. 2024

BMC Med Res Methodol

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Background Patient-Reported Outcome Measures (PROM) provide important information, however, missing PROM data threaten the interpretability and generalizability of findings by introducing potential bias. This study aims to provide insight into missingness mechanisms and inform future researchers on generalizability and possible methodological solutions to overcome missing PROM data problems during data collection and statistical analyses. Methods We identified 10,236 colorectal cancer survivors (CRCs) above 18y, diagnosed between 2014 and 2018 through the Danish Clinical Registries. We invited a random 20% (2,097) to participate in a national survey in May 2023. We distributed reminder e-mails at day 10 and day 20, and compared Initial Responders (response day 0–9), Subsequent Responders (response day 10–28) and Non-responders (no response after 28 days) in demographic and cancer-related characteristics and PROM-scores using linear regression. Results Of the 2,097 CRCs, 1,188 responded (57%). Of these, 142 (7%) were excluded leaving 1,955 eligible CRCs. 628 (32%) were categorized as initial responders, 418 (21%) as subsequent responders, and 909 (47%) as non-responders. Differences in demographic and cancer-related characteristics between the three groups were minor and PROM-scores only marginally differed between initial and subsequent responders. Conclusion In this study of long-term colorectal cancer survivors, we showed that initial responders, subsequent responders, and non-responders exhibit comparable demographic and cancer-related characteristics. Among respondents, Patient-Reported Outcome Measures were also similar, indicating generalizability. Assuming Patient-Reported Outcome Measures of subsequent responders represent answers by the non-responders (would they be available), it may be reasonable to judge the missingness mechanism as Missing Completely At Random.

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Who Are We Missing: Does Engagement in Patient-Reported Outcome Measures for Breast Cancer Vary by Age, Race, or Disease Stage?

Cited by 6 publications

References 20 publications

Nonresponse data in sexual well‐being among breast reconstruction patients—who are we overlooking?

Nonresponse data in sexual well‐being among breast reconstruction patients—who are we overlooking?

Recognizing Disparities in Breast Cancer Patient-Reported Outcome Measures

Missingness mechanisms and generalizability of patient reported outcome measures in colorectal cancer survivors – assessing the reasonableness of the “missing completely at random” assumption

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