Patient-reported outcomes (PROs) are measures completed by patients to capture outcomes that are meaningful and valued by patients. To help standardize PRO measures in patient navigation research and program evaluation, the Patient-Reported Outcomes Working Group (PROWG) was convened as part of the American Cancer Society's National Patient Navigator Leadership Summit.
The PROWG consisted of clinicians, researchers, and program managers from a variety of perspectives who developed a set of recommended PRO measures across the cancer continuum (ie, screening, diagnostic follow-up, treatment, survivorship, end of life) as well as those useful for assessing family caregivers. Measures were recommended based on face validity, responsiveness to navigation, reliability, and construct validity in relevant populations. Other considerations included readability, existence of multiple language versions, the existence of norm groups, and respondent burden.
The PROWG reached consensus on measures for use in the domains of treatment adherence; perceived barriers to care; satisfaction with cancer care; satisfaction with patient navigation services; working alliance with patient navigator; perceived knowledge/competence/self-efficacy; functional assessment/symptom burden; global quality of life; specific quality-of-life symptoms (eg, depression, anxiety); and perceived cultural competency of the navigator. In domains where validated measures were found lacking, recommendations were made for areas of needed scale development.
These measures should guide research and programmatic evaluation of patient navigation.
"In the USA, the Patient-Reported Outcomes Measurement Information System (PROMIS), a National Institutes of Health funded initiative starting in 2004, is providing a publicly available web-based resource that can be used to measure key health symptoms and HRQOL . The traditional paper-based PROs instruments are limited by its lack of flexibility, language and literacy requirement, [5,6] possible inappropriateness towards minority groups, [7,8] lack of timeliness (in generating instantaneous clinical meaningful interpretations)  and inability to adopt state-of-the-art measurement science such as Item Response Theory (IRT) and Computer Adapted Test (CAT) technique . To overcome the difficulty of integrating the administration and analysis of PRO instruments into clinical practice, researchers are developing and validating alternatives to traditional paper-based instruments such as office-based touch-screen computers, [11-13] telephone-based interactive voice-response (IVR) systems, [14-16] hand-held computers, [17,18] mobile phones, [19-21] and more recently, the Internet [22-24]. "
[Show abstract][Hide abstract] ABSTRACT: Background
Despite growing interest and urges by leading experts for the routine collection of patient reported outcome (PRO) measures in all general care patients, and in particular cancer patients, there has not been an updated comprehensive review of the evidence regarding the impact of adopting such a strategy on patients, service providers and organisations in an oncologic setting.
Based on a critical analysis of the three most recent systematic reviews, the current systematic review developed a six-method strategy in searching and reviewing the most relevant quantitative studies between January 2000 and October 2011 using a set of pre-determined inclusion criteria and theory-based outcome indicators. The Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) system was used to rate the quality and importance of the identified publications, and the synthesis of the evidence was conducted.
The 27 identified studies showed strong evidence that the well-implemented PROs improved patient-provider communication and patient satisfaction. There was also growing evidence that it improved the monitoring of treatment response and the detection of unrecognised problems. However, there was a weak or non-existent evidence-base regarding the impact on changes to patient management and improved health outcomes, changes to patient health behaviour, the effectiveness of quality improvement of organisations, and on transparency, accountability, public reporting activities, and performance of the health care system.
Despite the existence of significant gaps in the evidence-base, there is growing evidence in support of routine PRO collection in enabling better and patient-centred care in cancer settings.
BMC Health Services Research 06/2013; 13(1):211. DOI:10.1186/1472-6963-13-211 · 1.71 Impact Factor
"The goal is to establish a knowledge base that can inform selection of the most appropriate patient-reported outcome measures (PROMs) for use in this population. Among others, PROMs can assist patients in communicating their needs and concerns, and consequently improve the quality of care provided (Fiscella et al., 2011; Lohr and Zebrack, 2009). However, this can only be achieved when the " right " PROM is selected based on patients' perspectives of meaningfulness and priority (Lohr and Zebrack, 2009). "
[Show abstract][Hide abstract] ABSTRACT: Background and purpose:
Supportive care for people living with a diagnosis of lung cancer is paramount. The purpose of this systematic review was to determine the supportive care needs of people with lung cancer, and explore trends and gaps in the assessment of these needs emerging from this literature.
Through use of a wide range "free text" terms, a systematic search of five electronic databases (Medline, CINAHL, EMBASE, PsychINFO and BNI) was carried out for the period between January 2000 and September 2012. Two validated scoring systems were used to appraise eligible studies for methodological quality and level of evidence.
Based on pre-specified selection criteria, 59 articles (25 of quantitative methodology; 34 of qualitative methodology) reporting on 53 studies were retrieved and considered for further analysis. Overall, studies were of acceptable methodological quality. A wide spectrum of health care needs was evident among people with lung cancer. These needs were classified into nine domains: physical; daily living; psychological/emotional; spiritual/existential; informational; practical; patient-clinician communication; social and family-related; and cognitive. Daily living, practical, and cognitive needs were given less attention in this literature.
People with lung cancer have a complex array of supportive care needs that impact on various life aspects. Yet, our knowledge still remains fragmentary. Embarking on new longitudinal exploratory studies and well-designed clinical trials is therefore strongly encouraged. The use of patient reported outcome measures as a clinical intervention tool may be viewed as a means of identifying and managing unmet needs in this patient population.
European journal of oncology nursing: the official journal of European Oncology Nursing Society 12/2012; 17(4). DOI:10.1016/j.ejon.2012.10.013 · 1.43 Impact Factor
"Efficacy of patient assistance programs, educational or psychosocial interventions is often evaluated, at least in part, by questionnaires (Fiscella et al. ; Freund et al. ; David et al. ; Allicock et al. ). These surveys often ask participants to rate satisfaction with, utilization of or effectiveness of program services. "
[Show abstract][Hide abstract] ABSTRACT: The objective of this study was to assess factors that affect breast cancer patients' recall of patient assistance services.
We surveyed newly-diagnosed breast cancer patients and compared recall of receiving patient assistance services at 2 weeks and 6 months in a patient-assistance randomized controlled trial aimed to connect women to such programs. The intervention group received information about assistance programs targeted to their practical, psychosocial, and/or informational needs; the control group received a Department of Health pamphlet about breast cancer and its treatment, including a list of patient assistance services.
Of 333 women, 210 (63%) reported informational, 183 (55%) psychosocial and 177 (53%) practical needs. At 2 weeks, 96% (202/210) of women with informational needs reported receiving informational material but at 6 months, recall dropped to 69% (140/210). All women whose informational needs were met recalled receiving information, compared to 31% whose needs were unmet (p < 0.0001). Of 109 intervention patients with psychosocial or practical needs, 77% (79) contacted a program specified in their action plan at 2 weeks. However, at 6 months, only 39% (31/79) recalled contacting a program. Women without recall were less likely to report having their needs met (6% vs. 58%; p < 0.001).
Recall of patient assistance services is strongly related to having needs met. Use of patient surveys to evaluate utilization or impact of such programs should be used with caution due to poor patient recall. CLINICAL TRIALS # NCT00233077: http://www.clinicaltrials.gov/ct2/show/NCT00233077?term=Nina+Bickell&rank=2.
Data provided are for informational purposes only. Although carefully collected, accuracy cannot be guaranteed. The impact factor represents a rough estimation of the journal's impact factor and does not reflect the actual current impact factor. Publisher conditions are provided by RoMEO. Differing provisions from the publisher's actual policy or licence agreement may be applicable.