Case Studies from the Clinic: Initiating and Implementing Patient-Reported Outcome Measures

Locklear, Tracie; DeBar, Lynn; Willig, James H.; Rundell, Sean D.; Blackhall, Leslie; Zatzick, Douglas; Staman, Karen; Bhavsar, Nrupen A.; Weinfurt, Kevin P.; Abernethy, Amy Pickar

doi:10.13063/egems.1286

Cited by 3 publications

(3 citation statements)

References 7 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The use of PROMs continues to expand beyond clinical research in recognition of the potential of this information to improve the quality of healthcare by placing the patient at the center of decision making; however, their widespread use and feasibility have been limited by several barriers. Consistent with previous studies ( 25 ), barriers related to healthcare systems, healthcare professionals, and patients have been identified. Most obstacles are inherent to the structure of the Spanish national healthcare system, namely the heterogeneity of this system, including the healthcare process, organization models and information systems, and the lack of resources.…”

Section: Discussionsupporting

confidence: 86%

Defining a Standard Set of Patient-Reported Outcomes for Patients With Advanced Ovarian Cancer

et al. 2022

View full text Add to dashboard Cite

PurposeAdvanced ovarian cancer (AOC) and its treatment cause several symptoms and impact on patients’ health-related quality of life (HRQoL). We aim to reach a consensus on the most relevant patient-reported outcome (PROs), the corresponding measures (PROMs), and measurement frequency during AOC patients’ follow-up from patients’ and healthcare professionals’ (HCP) perspective.MethodsThe project comprised five steps: 1) a literature review, 2) a focus group with patients, 3) a nominal group with HCP, 4) two round-Delphi consultations with patients and HCP, and 5) a final meeting with HCP. Delphi questionnaire was elaborated based on literature review, focus group (n=5 patients), and nominal group (n=16 HCP). The relevance of each PRO and the appropriateness (A) and feasibility (F) of the proposed PROM were assessed (Likert scale 1=strongly agree; 9=strongly disagree). The consensus was reached when at least 75% of the panelists rated it as ‘relevant’, ‘appropriate’, or ‘feasible’ (score 7-9).ResultsA total of 56 HCP [51.8% Hospital Pharmacy; 41.1% Oncology; 3.6% Nursing; and 3.6% Psycho-oncology; mean time in specialty 12.5 (8.0) years] and 10 AOC patients [mean time diagnosis 5.4 (3.0) years] participated in the 1st round. All PROs achieved consensus regarding their relevance, except dry skin (58.0%). Agreement was reached for PRO-CTCAE to be used to assess fatigue (A:84.9%; F:75.8%), neuropathy (A:92.4%; F:77.3%), diarrhea (A:87.9%; F:88.7%), constipation (A:86.4%; F:75.8%), nausea (A:89.4%; F:75.8%), insomnia (A:81.8%; F:88.7%), abdominal bloating (A:82.2%; F:82.2%) and sexuality (A:78.8%; F:88.6%); EQ-5D to determine patients’ HRQoL (A:87.9%; F:80.3%), pain (A:87.9%; F:75.8%) and mood (A:77.7%; F:85.5%); to assess treatment adherence the Morisky-Green (A:90.9%; F:84.9%) and the dispensing register (A:80.3%; F:80.3%) were chosen. It was agreed to note in the medical record whether the patient’s treatment preferences had been considered during decision-making (A:78.8%; F:78.8%) and to use a 5-point Likert scale to assess treatment satisfaction (A:86.4%; F:86.4%). Panelists agreed (A:92.4%; F: 77.3%) to collect these PROs (1) at the time of diagnosis/relapse; (2) one month after starting treatment/change therapeutic strategy; (3) every three months during the 1st-year of treatment; and later (4) every six months until treatment completion/change.ConclusionsThe consensus reached represents the first step towards including the patient’s perspective in AOC follow-up. The standardized collection of PROs in clinical practice may contribute to optimizing the follow-up of these patients and thus improving the quality of care.

show abstract

Section: Discussionsupporting

confidence: 86%

Defining a Standard Set of Patient-Reported Outcomes for Patients With Advanced Ovarian Cancer

et al. 2022

View full text Add to dashboard Cite

show abstract

“…Reporting daily mental-health ratings can be a significant burden for patients and can have an adverse effect on their mental status [ 53 , 54 ]. However, these burdens may be reduced if patients recognize the clinical benefits of reporting their outcomes (ie, PRO) [ 55 ]. Our results can help patients understand the positive effects of adherence and provide motivation for them to adhere to self-reporting and thereby improve the quality of treatment.…”

Section: Discussionmentioning

confidence: 99%

Depression Screening Using Daily Mental-Health Ratings from a Smartphone Application for Breast Cancer Patients

Kim¹,

Lim²,

Min³

et al. 2016

J Med Internet Res

116

View full text Add to dashboard Cite

BackgroundMobile mental-health trackers are mobile phone apps that gather self-reported mental-health ratings from users. They have received great attention from clinicians as tools to screen for depression in individual patients. While several apps that ask simple questions using face emoticons have been developed, there has been no study examining the validity of their screening performance.ObjectiveIn this study, we (1) evaluate the potential of a mobile mental-health tracker that uses three daily mental-health ratings (sleep satisfaction, mood, and anxiety) as indicators for depression, (2) discuss three approaches to data processing (ratio, average, and frequency) for generating indicator variables, and (3) examine the impact of adherence on reporting using a mobile mental-health tracker and accuracy in depression screening.MethodsWe analyzed 5792 sets of daily mental-health ratings collected from 78 breast cancer patients over a 48-week period. Using the Patient Health Questionnaire-9 (PHQ-9) as the measure of true depression status, we conducted a random-effect logistic panel regression and receiver operating characteristic (ROC) analysis to evaluate the screening performance of the mobile mental-health tracker. In addition, we classified patients into two subgroups based on their adherence level (higher adherence and lower adherence) using a k-means clustering algorithm and compared the screening accuracy between the two groups.ResultsWith the ratio approach, the area under the ROC curve (AUC) is 0.8012, indicating that the performance of depression screening using daily mental-health ratings gathered via mobile mental-health trackers is comparable to the results of PHQ-9 tests. Also, the AUC is significantly higher (P=.002) for the higher adherence group (AUC=0.8524) than for the lower adherence group (AUC=0.7234). This result shows that adherence to self-reporting is associated with a higher accuracy of depression screening.ConclusionsOur results support the potential of a mobile mental-health tracker as a tool for screening for depression in practice. Also, this study provides clinicians with a guideline for generating indicator variables from daily mental-health ratings. Furthermore, our results provide empirical evidence for the critical role of adherence to self-reporting, which represents crucial information for both doctors and patients.

show abstract

“…If feedback of publicized performance data is perceived to be credible, appropriate, and applicable to practice (context), then this may trigger providers' trust, value (response), and use of performance data (outcome). Boyce et al (2014), Greenhalgh (2009), , Greenhalgh, Dalkin, Gooding, et al (2017), Locklear et al (2017), Porter et al (2016, , Greenhalgh, Dalkin, Gooding, et al (2017), Reeve et al (2013) "Organizational support" #6. If the feedback of performance data is valued by providers (context) alongside of adequate resources and support (context), then this may enable providers' ability to act on data (response) for quality improvement (outcome) when system-and organizational-wide strategies are in place (resource/context).…”

Section: Challenges To Ipt Development Approachmentioning

confidence: 99%

Developing an Initial Program Theory to Explain How Patient-Reported Outcomes Are Used in Health Care Settings: Methodological Process and Lessons Learned

Flynn

Schick‐Makaroff

Levay

et al. 2020

International Journal of Qualitative Methods

View full text Add to dashboard Cite

A central aspect of any theory-driven realist investigation (synthesis or evaluation) is to develop an initial program theory (IPT). An IPT can be used to frame and understand how, for whom, why, and under what contexts complex interventions work or not. Despite well-established evidence that IPTs are a central aspect to any realist investigation, there is wide variation and a lack of methodological discussion on how to develop an IPT. In this article, we present the approach that we used to develop an IPT of how patient-reported outcomes (PROs) are used in health care settings. Specifically, we completed a systematic review to extract tacit theories reported in the literature. The benefit of this approach was that it provided a rigorous review of the literature in the development of IPTs. The challenges included (1) rediscovering what is already well established in the theoretical literature, (2) generating an overabundance of partial candidate theories, and (3) extensive use of time and resources for what was the first stage to our larger funded research study. Our recommendations to other scholars considering this approach are to ensure that they (1) live within their means and (2) narrow the scope of the research question and/or develop a conceptual framework using middle-range theories. These methodological insights are highly relevant to researchers embarking on a realist investigation, tasked with developing an IPT.

show abstract

Case Studies from the Clinic: Initiating and Implementing Patient-Reported Outcome Measures

Cited by 3 publications

References 7 publications

Defining a Standard Set of Patient-Reported Outcomes for Patients With Advanced Ovarian Cancer

Defining a Standard Set of Patient-Reported Outcomes for Patients With Advanced Ovarian Cancer

Depression Screening Using Daily Mental-Health Ratings from a Smartphone Application for Breast Cancer Patients

Developing an Initial Program Theory to Explain How Patient-Reported Outcomes Are Used in Health Care Settings: Methodological Process and Lessons Learned

Contact Info

Product

Resources

About