Psycholinguistic features,design attributes,and respondent-reported cognition predict response time to patient-reported outcome measure items

Purpose

Patient-reported outcome measures (PROMs) vary in their psycholinguistic complexity. This study examined whether response time to PROM items is related to psycholinguistic attributes of the item and/or the self-reported cognitive ability of the respondent.

Methods

Baseline data from Wave 2 of the Quality of Life in Neurological Disorders (Neuro-QoL) development study were reanalyzed. That sample contained 581 adults with neurological disorders and whose self-reported cognitive abilities were quantified by the Neuro-QoL v2.0 Cognitive Function Item Bank. 185 Neuro-QoL items were coded for several psycholinguistic variables and design attributes: number of words and syllables, mean imageability of words, mean word frequency, mean age of word acquisition, and response format (e.g., about symptom frequency or task difficulty). Data were analyzed with linear and generalized linear mixed models.

Results

Main effects models revealed that slower response times were associated with respondents with lower self-reported cognitive abilities and with PROM items that contained more syllables, less imageable (e.g., more abstract) words, and that asked about task difficulty rather than symptom frequency. Interaction effects were found between self-reported cognition and those same PROM attributes such that people with worse self-reported cognitive abilities were disproportionately slow when responding to items that were longer (more syllables), contained less imageable words, and asked about task difficulty.

Conclusion

Completing a PROM requires multiple cognitive skills (e.g., memory, executive functioning) and appraisal processes. Response time is a means of operationalizing the amount or difficulty of cognitive processing, and this report indicates several aspects of PROM design that relate to a measure’s cognitive burden. However, future research with better experimental control is needed.

     

Association between physical activity and patient-reported outcome measures in patients with lung cancer: a systematic review and meta-analysis

Quality of Life Research - The aim of this systematic review was to examine the association between physical activity (PA) and Health-Related Quality of Life (HRQoL) as well as other...     

Reflection paper on copyright,patient-reported outcome instruments and their translations

With the growth of patient-reported outcome (PRO) measurement, questions arise regarding how copyright protection applies to PRO instruments in general and to their translations in particular. The main objectives of this reflection paper are: 1) to help authors of PRO instruments understand basic rules of intellectual property and copyright that protect the integrity of their instruments and derivatives; and 2) to provide recommendations to authors and users of PRO instruments to prevent misuse or abuse.National laws on intellectual property (IP) and the international Berne Convention fully apply to PRO instruments since they are creations of the mind. Therefore, the copyright holder / owner / claimant of a PRO instrument, i.e., the person or legal entity who owns the copyright of the instrument, is granted exclusive rights that are divided into two main categories: moral and economic rights. Moral rights are: 1) the right of attribution (or right of paternity), i.e., the right to claim authorship of the work, 2) the right against false attribution, and 3) the right of integrity, i.e., the right to object to any mutilation, deformation or modification of the work. Economic rights represent the exclusive rights of the author to make or authorize reproduction, development of derivative works, distribution and communication to the public. In other words, the PRO instrument’s copyright holder controls access (distribution, reproduction), and authorizes all derivative works, i.e., adaptations (e.g., electronic formats), modifications (e.g., shorter versions), and translations. Hence, the access to and use of an original PRO instrument and its derivatives in any kind of research should always be associated with the identification of its copyright holder. However, in some cases, this identification may be challenging, in particular when copyright ownership is not clearly defined. To prevent ownership conflicts as well as misuse or abuse of PRO instruments, the ISOQOL Translation and Cultural Adaptation Special Interest Group (TCA-SIG) provides recommendations to authors of PRO instruments and their users. In particular, the TCA-SIG recommends that the ownership of PRO instruments and their derivatives should be defined from the beginning (i.e., from the development of the instrument) and along the life cycle of the instrument between all parties involved. These recommendations apply not only to PRO instruments but also to all the other clinical outcome assessments (COAs), since they are also creations of the mind.     

Viewing assessments of patient-reported heath status as conversations: Implications for developing and evaluating patient-reported outcome measures

Quality of Life Research - Patient-reported outcome measures (PROMs) are frequently used in research to reflect the patient’s perspective. In this commentary, I argue that further...     

Scientists and clinicians have to be on the qui VIVE: benefit, outcome, value and utility in health care as a challenge

Aim

Health care is no longer a national topic as the results of health care research as well as health care services are shared across countries and continents. The common feature in almost any of these countries is the perceived limitation of health care resources and the discussions about health care expenditures which strongly depend on the definition of health care values.

Hygienization of terms

Identical terms should be used with the same commonly accepted meanings.

Different perspectives–different values

Health care values from a US, UK and German perspective are compared and the influence of the perspectives on practical health care decisions are discussed.

The sequence of value information validity evidence (VIVE)

Seven steps are presented which can capture the value of health care from the perspectives of different players.

Conclusion

Two reciprocal perspectives explain the differences. The individual perspective, which is used by patients and doctors, considers consequences per costs, while a general perspective, which is used by economists and politicians, considers costs per consequences. The conclusions derived from these two perspectives are different and depend on values, not directly on evidence. Nevertheless, evidence is essential to coin our values. Therefore, it is essential first to define the problem which has to be solved, and subsequently to select the methods that help to find and to appraise the found evidence. The appraised evidence will coin our values which finally are the basis for solving the problems.     

Health behaviors and weight status of childhood cancer survivors and their parents: similarities and opportunities for joint interventions

Childhood cancer survivors are at increased risk for chronic health conditions that may be influenced by their cancer treatment and unhealthy lifestyle behaviors. Despite the possibility that interventions targeting the survivor-parent dyad may hold promise for this population, a clearer understanding of the role of family factors and the lifestyle behaviors of both survivors and parents is needed. A mailed cross-sectional survey was conducted in 2009 to assess weight status (body mass index), lifestyle behaviors (eg, diet, physical activity), and the quality of the parent-child relationship among 170 childhood cancer survivors who were treated at MD Anderson Cancer Center and 114 of their parents (80% mothers). Survivors were more physically active and consumed more fruits and vegetables than their parents. However, fewer than half of survivors or parents met national guidelines for diet and physical activity, and their weight status and fat intakes were moderately correlated (r=.30-.57; P<0.001). Multilevel models showed that, compared with survivors with better than average relationships, those with poorer than average relationships with their parents were significantly more likely to consume high-fat diets (P<0.05). Survivors and their parents may thus benefit from interventions that address common lifestyle behaviors, as well as issues in the family environment that may contribute to an unhealthy lifestyle.     

A method to create a standardized generic and condition-specific patient-reported outcome measure for patient care and healthcare improvement

Purpose

Patient-reported outcome measures (PROMs), which are generic or condition-specific, are used for a number of reasons, including clinical care, clinical trials, and in national-level efforts to monitor the quality of health care delivery. Creating PROMs that meet different purposes without overburdening patients, healthcare systems, providers, and data systems is paramount. The objective of this study was to test a generalizable method to incorporate condition-specific issues into generic PROM measures as a first step to producing PROMs that efficiently provide a standardized score. This paper outlines the method and preliminary findings focused on a PROM for osteoarthritis of the knee (OA-K).

Methods

We used a mixed-methods approach and PROMIS^® measures to test development of a combined generic and OA-K-specific PROM. Qualitative methods included patient focus groups and provider interviews to identify impacts of OA-K important to patients. We then conducted a thematic analysis and an item gap analysis: identified areas covered by existing generic PROMIS measures, identified “gap” areas not covered, compared gap areas to legacy instruments to verify relevance, and developed new items to address gaps. We then performed cognitive testing on new items and drafted an OA-K-specific instrument based on findings.

Results

We identified 52 existing PROMIS items and developed 24 new items across 14 domains.

Conclusions

We developed a process for creating condition-specific instruments that bridge gaps in existing generic measures. If successful, the methodology will create instruments that efficiently gather the patient’s perspective while allowing health systems, researchers, and other interested parties to monitor and compare outcomes over time, conditions, and populations.

     

The association between care experiences and parent ratings of care for different racial, ethnic, and language groups in a Medicaid population

Objective. To examine the association between care experiences and parent ratings of care within racial/ethnic/language subgroups. Data Source. National Consumer Assessment of Healthcare Providers and Systems Benchmarking Database 3.0 (2003–2006). Sample Characteristics. 111,139 parents of minor Medicaid managed care enrollees. Study Design. Cross‐sectional observational study predicting “poor” (0–5 on 0–10 scale) parent ratings of personal doctor, specialist, health care, and health plan from care experiences for different parent race/ethnicity/language subgroups (Latino/Spanish, Latino/English, white, and black). Principal Findings. Care experiences had similar associations with the probability of poor parent ratings of care across the four racial/ethnic/language subgroups (p>.20). A one standard deviation improvement in the doctor communication care experience was associated with about half the frequency of poor ratings of care for personal doctor and health care in all subgroups (p<.05). Sensitivity analysis of individual communication items found that failure to provide explanations to children predicted poor ratings of care only among whites, who also weighed the length of physician interaction more heavily than other subgroups. Conclusions. Communication‐based interventions may improve experiences and ratings of care for all subgroups, although implementation of these interventions may need to consider preferences associated with race, ethnicity, and language.     

Benefit finding in survivors of childhood cancer and their parents: further empirical support for the Benefit Finding Scale for Children

Background Diagnosis of a life‐threatening condition has been linked to post‐traumatic stress. However, only recently has it been acknowledged that positive outcomes including post‐traumatic growth or benefit finding may also occur. The aim of our study was to extend previous work describing benefit finding among survivors of childhood cancer, by determining the contribution of demographic and medical variables and associations between child benefit finding and parent post‐traumatic growth. Methods Survivors of any child cancer (leukaemia, central nervous system or solid tumour; age 12–15 years; completed treatment >2 years) were recruited from routine follow‐up clinics and asked to complete questionnaires [Benefit Finding Scale for Children (BFSC), quality of life (QOL), post‐traumatic stress (PTS), illness perception and optimism]. Parents completed parallel measures to describe their own post‐traumatic growth (PTG), QOL, PTS and illness perception. Results Forty‐eight survivors and parents completed questionnaires (response rate: 81%). The BFSC showed good internal reliability (alpha = 0.91). Diagnosis of leukaemia, greater optimism and reports that the illness still affects their life today were associated with higher scores on the BFSC among survivors themselves. For parents, perceptions of how much the illness still affects them emotionally was associated with PTG. There was no association between children's benefit finding and parents' PTG. Conclusions The BFSC is a useful and reliable instrument to assess positive outcomes after cancer in children. The extent to which survivors are optimistic and perceive on‐going effects of the illness on their daily lives is significantly associated with the ability to find benefit after end of treatment.     

Associations between interim patient-reported outcome measures and functional status at discharge from rehabilitation for non-specific lumbar impairments

Quality of Life Research - Identify impact of frequency and timing of interim Patient-Reported Outcome Measures (PROMs) assessments during episodes of care for rehabilitation services in outpatient...     

A PRO-cision medicine intervention to personalize cancer care using patient-reported outcomes: intervention development and feasibility-testing

Quality of Life Research - PRO-cision medicine refers to personalizing care using patient-reported outcomes (PROs). We developed and feasibility-tested a PRO-cision Medicine remote PRO monitoring...     

A brief patient-reported outcome instrument for primary care: German translation and validation of the Measure Yourself Medical Outcome Profile (MYMOP)

Background

Measure Yourself Medical Outcome Profile (MYMOP) is a patient-generated outcome instrument capable of measuring effects from a wide range of health care interventions. This paper reports the translation of this instrument into German (MYMOP-D) and the assessment of validity and sensitivity to change for the MYMOP-D. The instrument was piloted in a German primary care context.

Methods

The translation process was conducted according to international guidelines. Recruited patients of both general practitioners and non-medical Complementary and Alternative Medicine (CAM) practitioners (“Heilpraktiker”) in the German state of Baden-Wuerttemberg completed a questionnaire comprised of the MYMOP-D and the EQ-5D. Responses were analysed to assess construct validity. For assessing the instrument’s sensitivity to change, patients received the MYMOP-D again after four weeks at which point they were also asked for their subjective views on change of symptoms. Correlation between MYMOP-D and EQ-5D and sensitivity to change as gradient in score change and as standardized response mean (SRM) were calculated.

Results

476 patients from general practices and 91 patients of CAM practitioners were included. Construct validity of the MYMOP-D was given with a correlation of r = .47 with the EQ-5D. Sensitivity to change for subjective change of symptoms could only be analysed for improvement or no change of symptoms, as only 12 patients reported deterioration of symptoms. Results showed the expected smooth gradient with 2.2, 1.3, and 0.5 points of change for large, little improvement and no change, respectively. SRM for MYMOP-D Profile Score was 0.88.

Conclusions

The MYMOP-D shows excellent construct validity. It is able to detect changes when symptoms in patients improve or remain unchanged. Deterioration of symptoms could not be evaluated due to too few data. With its brevity and simplicity, it might be an important tool for enhancing patient-centred care in the German health care context.

Electronic supplementary material

The online version of this article (doi:10.1186/s12955-014-0112-5) contains supplementary material, which is available to authorized users.     

Preventing unintentional pediatric injuries: a tailored intervention for parents and providers

The purpose of this study was to determine the efficacy of providing (i) tailored injury prevention information (T-IPI) to parents and (ii) concurrent T-IPI to parents and providers to promote parent adoption of safety practices. During well-child visits, parents of children ages 4 and younger completed a computer assessment and were randomized to receive generic injury prevention information, T-IPI or T-IPI supplemented with a tailored summary for providers. Follow-up assessments were completed by telephone 1 month later. Parents receiving T-IPI alone or with supplementary provider information were more likely to report adopting a new injury prevention behavior than those receiving generic information (49 and 45%, respectively, compared with 32%; odds ratio=2.0 and 1.9, respectively), and these effects were greatest among the least educated parents. In addition, more complicated behavior changes were reported by those receiving tailored information. Provider receipt of feedback did not result in significantly different provider-parent communication or change in parents' safety practices. Providing parents with individually tailored pediatric injury prevention information may be an effective method for delivering injury prevention anticipatory guidance. Tailoring may have particular utility for more complicated behaviors and for communication with less educated parents.