Purpose
Patient-reported outcome and experience measures (PROMs/PREMs) are well established in research for many health conditions, but barriers persist for implementing them in routine care. ...Implementation science (IS) offers a potential way forward, but its application has been limited for PROMs/PREMs.
Methods
We compare similarities and differences for widely used IS frameworks and their applicability for implementing PROMs/PREMs through case studies. Three case studies implemented PROMs: (1) pain clinics in Canada; (2) oncology clinics in Australia; and (3) pediatric/adult clinics for chronic conditions in the Netherlands. The fourth case study is planning PREMs implementation in Canadian primary care clinics. We compare case studies on barriers, enablers, implementation strategies, and evaluation.
Results
Case studies used IS frameworks to systematize barriers, to develop implementation strategies for clinics, and to evaluate implementation effectiveness. Across case studies, consistent PROM/PREM implementation barriers were technology, uncertainty about how or why to use PROMs/PREMs, and competing demands from established clinical workflows. Enabling factors in clinics were context specific. Implementation support strategies changed during pre-implementation, implementation, and post-implementation stages. Evaluation approaches were inconsistent across case studies, and thus, we present example evaluation metrics specific to PROMs/PREMs.
Conclusion
Multilevel IS frameworks are necessary for PROM/PREM implementation given the complexity. In cross-study comparisons, barriers to PROM/PREM implementation were consistent across patient populations and care settings, but enablers were context specific, suggesting the need for tailored implementation strategies based on clinic resources. Theoretically guided studies are needed to clarify how, why, and in what circumstances IS principles lead to successful PROM/PREM integration and sustainability.
Purpose
The KLIK Patient-Reported Outcome Measure (PROM) portal is an evidence-based intervention implemented in clinical practice in > 25 Dutch hospitals for patients (children and adults) who ...regularly visit the outpatient clinic. Implementation science frameworks can be used to understand why implementation succeeded or failed, to structure barriers and enablers, and to develop implementation strategies to overcome barriers. This paper aimed to (A) retrospectively describe determinants of successful KLIK PROM implementation using the Consolidated Framework for Implementation Research (CFIR), and (B) identify current barriers and match implementation strategies.
Methods
(A) The KLIK implementation process was described retrospectively based on literature and experience, using the 39 CFIR constructs organized in five general domains: intervention characteristics, outer setting, inner setting, characteristics of individuals, and implementation process. (B) The CFIR-Expert Recommendations for Implementing Change (ERIC) Implementation Strategy Matching tool identified current barriers in the KLIK implementation and matched implementation strategies that addressed the identified barriers.
Results
(A) The most prominent determinants of successful KLIK PROM implementation lie in the following CFIR domains: intervention characteristics (e.g., easy to use), characteristics of individuals (e.g., motivation), and process of implementation (e.g., support). (B) 13 CFIR constructs were identified as current barriers for implementing the KLIK PROM portal. The highest overall advised ERIC strategy for the specific KLIK barriers was to identify and prepare champions.
Conclusion
Using an implementation science framework, e.g., CFIR, is recommended for groups starting to use PROMs in clinical care as it offers a structured approach and provides insight into possible enablers and barriers.
Introduction
The KLIK Patient Reported Outcome Measures (PROM) portal (
www.hetklikt.nu
) has been implemented since 2011 in clinical practice in over 20 Dutch hospitals. Patients and/or parents ...complete PROMs before the outpatient consultation and answers are subsequently discussed by clinicians during consultation. This study aims to provide insight into patients’ and parents’ perspective on the use of the KLIK PROM portal in order to optimize its implementation in pediatric clinical practice.
Methods
Patients (12–19 years) and parents (of children 0–19 years) from the Emma Children’s Hospital were invited to participate. A mixed-method design was used; (1) Focus groups were held and analyzed using thematic analysis in psychology, (2) a questionnaire was sent out and analyzed using descriptive statistics.
Results
(1) Eight patients and 17 parents participated. Patients mentioned that KLIK has an attractive layout. However, PROMs were sometimes considered irrelevant and repetitive. Parents valued that KLIK provides insight into their child’s functioning, but they were not satisfied with the extent to which PROMs were discussed by clinicians. (2) 31 patients and 130 parents completed the questionnaire. Overall, patients and parents reported a satisfaction score of 7.9/10 and 7.3/10, respectively. 81% of patients and 74% of parents indicated that KLIK is easy to use.
Conclusion
Patients and parents are generally satisfied with KLIK, however, points of improvement were mentioned. These are currently being addressed by e.g., upgrading the KLIK website, implementing PROMIS item banks in KLIK to reduce irrelevancy and repetitiveness of PROMs, and implementation strategies to improve the discussion-rate. In this way, implementation of the KLIK PROM portal can be further optimized, with the ultimate goal to improve quality of care.
Purpose
Since 2011, the evidence-based KLIK Patient Reported Outcome Measure (PROM) portal has been implemented in clinical practice in > 20 Dutch hospitals. Patients and/or parents complete PROMs on ...Health Related Quality of Life, symptoms and psychosocial functioning before their outpatient consultation. Answers are converted into an ePROfile and discussed by clinicians during consultation to monitor well-being over time and detect problems early. This study aims to get insight into the KLIK implementation from the clinician’s perspective.
Methods
As part of the KLIK implementation process, annual meetings were held with multidisciplinary teams to evaluate the use of KLIK. An online questionnaire was sent regarding (1) overall satisfaction, (2) feeling competent to discuss PROMs, (3) use of KLIK during the consultation, (4) influence of KLIK on the consultation, (5) usability of the KLIK PROM portal, (6) satisfaction with PROMs and feedback, and (7) support of the KLIK expert team. Open questions about (dis)advantages were included. Descriptive analyses were used.
Results
One hundred and forty-eight clinicians (response-rate 61%) from 14 hospitals in the Netherlands participated. Results show that: (1) clinicians report an overall satisfaction of median = 69/100 (visual analogue scale), (2) 85.8% feel competent discussing the ePROfile, (3) 70.3% (almost) always discuss the ePROfile, (4) 70.3% think that KLIK improves consultation, (5) 71.6% think KLIK is easy to use, (6) 80.4% are satisfied with the feedback of the overall KLIK ePROfile, (7) 71.6% experience sufficient support of the KLIK team.
Conclusion
Participating clinicians are generally satisfied with KLIK. Improvements to the KLIK PROM portal are now realized based on the mentioned disadvantages (e.g., shorten PROM completion by use of PROMIS and integrating KLIK with Electronic Health Records).
Abstract
Background
The International Consortium for Health Outcomes Measurement (ICHOM) develops condition-specific Standard Sets of outcomes to be measured in clinical practice for value-based ...healthcare evaluation. Standard Sets are developed by different working groups, which is inefficient and may lead to inconsistencies in selected PROs and PROMs. We aimed to identify common PROs across ICHOM Standard Sets and examined to what extend these PROs can be measured with a generic set of PROMs: the Patient-Reported Outcomes Measurement Information System (PROMIS®).
Methods
We extracted all PROs and recommended PROMs from 39 ICHOM Standard Sets. Similar PROs were categorized into unique PRO concepts. We examined which of these PRO concepts can be measured with PROMIS.
Results
A total of 307 PROs were identified in 39 ICHOM Standard Sets and 114 unique PROMs are recommended for measuring these PROs. The 307 PROs could be categorized into 22 unique PRO concepts. More than half (17/22) of these PRO concepts (covering about 75% of the PROs and 75% of the PROMs) can be measured with a PROMIS measure.
Conclusion
Considerable overlap was found in PROs across ICHOM Standard Sets, and large differences in terminology used and PROMs recommended, even for the same PROs. We recommend a more universal and standardized approach to the selection of PROs and PROMs. Such an approach, focusing on a set of core PROs for all patients, measured with a system like PROMIS, may provide more opportunities for patient-centered care and facilitate the uptake of Standard Sets in clinical practice.
Purpose
This study aimed to validate the PROMIS Pediatric item bank v2.0 Peer Relationships and compare reliability of the full item bank to its short form, computerized adaptive test (CAT) and the ...social functioning (SF) subscale of the Pediatric Quality of Life Inventory (PedsQL™).
Methods
Children aged 8–18 (
n
= 1327), representative of the Dutch population completed the Peer Relationships item bank. A graded response model (GRM) was fit to the data. Structural validity was assessed by checking item-fit statistics (S-
X
2
,
p
< 0.001 = misfit). For construct validity, a moderately strong correlation (> 0.50) was expected between Peer Relationships and the PedsQL SF subscale. Cross-cultural DIF between U.S. and NL was assessed using logistic regression, where an item with McFadden’s pseudo
R
2
> 0.02 was considered to have DIF. Percentage of participants reliably measured was assessed using the standard error of measurement (SEM) < 0.32 as a criterion (reliability of 0.90). Relative efficiency ((1-SEM
2
)/
n
items
) was calculated to compare how well the instruments performed relative to the amount of items administered.
Results
In total, 527 (response rate: 39.7%) children completed the PROMIS v2.0 Peer Relationships item bank (
n
items
= 15) and the PedsQL™ (
n
items
= 23). Structural validity of the Peer Relationships item bank was sufficient, but one item displayed misfit in the GRM model (S-
X
2
< 0.001); 5152R1r (“I played alone and kept to myself”). The item 733R1r (“I was a good friend”) was the only item that displayed cross-cultural DIF (
R
2
= 0.0253). The item bank correlated moderately high (
r
= 0.61) with the PedsQL SF subscale Reliable measurements were obtained at the population mean and > 2SD in the clinically relevant direction. CAT outperformed all other measures in efficiency. Mean T-score of the Dutch general population was 46.9(SD 9.5).
Conclusion
The pediatric PROMIS Peer Relationships item bank was successfully validated for use within the Dutch population and reference data are now available.
Purpose
This study aims to link scores of the Revised Child Anxiety and Depression Scale short version (RCADS-25) to the metric of the PROMIS pediatric item banks Anxiety and Depressive Symptoms in a ...general Dutch population sample.
Methods
The RCADS-25 and PROMIS pediatric item banks Anxiety and Depressive Symptoms were administered online to 2,893 Dutch children and adolescents aged 8–18. Assumptions for linking methods were checked. Linking was achieved by using three item response theory (IRT) and two equipercentile methods. For each method, the observed PROMIS metric scores were compared to the ones predicted from the RCADS-25 subscale scores using correlations, mean and
SD
of differences, and
RMSD
.
Results
The assumptions for IRT-based and equipercentile linking were met. The IRT-based method using separate calibration with Stocking-Lord constants was considered the optimal choice for linking both RCADS-25 subscales to the PROMIS metric. Based on this Stocking-Lord approach, we created item parameters for RCADS-25 items and two crosswalk tables.
Conclusion
The RCADS-25 item parameters and crosswalk tables presented in this study are sufficiently valid. Researchers can use these products to translate the RCADS-25 anxiety and depression subscales scores to the PROMIS metric in order to ensure comparability with the previous research.
Parents of children with severe inborn errors of metabolism frequently face stressful events related to the disease of their child and are consequently at high risk for developing parental ...posttraumatic stress disorder (PTSD). Assessment and subsequent treatment of PTSD in these parents is however not common in clinical practice. PTSD can be effectively treated by Eye Movement Desensitization and Reprocessing (EMDR), however no studies have been conducted yet regarding the effect of EMDR for parental PTSD. EMDR is generally offered in multiple weekly sessions which may preclude participation of parents as they are generally overburdened by the ongoing and often intensive care for their child. Therefore, we offered time-limited EMDR with a maximum of four sessions over two subsequent days to two parents of mucopolysaccharidosis type III (MPS III) patients to explore its potential effects. Both qualitative and quantitative outcomes were used to evaluate treatment effects. Both parents felt more resilient and competent to face future difficulties related to the disease of their child, and no adverse effects were reported. Quantitative outcomes showed a clinically significant decrease in post traumatic stress symptoms and comorbid psychological distress from pre- to post treatment, and these beneficial effects were maintained at follow-up. In conclusion, time-limited EMDR may be a highly relevant treatment for traumatized parents of children with MPS III, and probably also for parents of children with other rare progressive disorders. Further research is needed to validate the efficacy of EMDR in this specific population.
Introduction:
Integration of patient-reported outcome measures (PROMs) in routine clinical care is growing but lacks consolidated evidence around its impact on pediatric care. This systematic review ...aims to evaluate the impact of integrating PROMs in routine pediatric clinical care on various outcomes in pediatric clinical care.
Data Sources:
MEDLINE, Embase, CINAHL, PsycINFO, and Cochrane Library. Web of Science database was searched selectively to ensure extended coverage.
Study Selection:
We included longitudinal studies reporting on the integration of PROMs in routine pediatric clinical care of chronic diseases. Studies in languages other than English, published prior to the year 2000, and reporting on secondary data were excluded.
Data Extraction:
Two reviewers independently extracted data from included studies. Extracted data included citation of each study, type of healthcare setting, location of the study, characteristics of patient population, type of chronic disease, name and type of PROM, mode of administration, and reported outcomes.
Results:
Out of 6,869 articles, titles and abstracts of 5,416 articles and full text of 23 articles were screened in duplicate. Seven articles reporting results from six studies met eligibility criteria. Integration of PROMs increased the identification and discussion around health-related quality of life (HRQOL), especially in psychosocial and emotional domains, but showed mixed results with the impact on quality of care. No studies assessed the impact of integrating PROMs on healthcare utilization.
Limitations:
Due to significant heterogeneity in the studies, a meta-analysis was not conducted.
Conclusions:
Integrating PROMs could have a positive impact on HRQOL; however, further studies are required to determine the impact of PROMs in routine pediatric clinical care.
Background
Using patient‐reported outcomes (PROs) in clinical practice has been shown to enhance detection of health‐related quality of life problems and satisfaction with care in children with ...cancer. This study seeks to identify which PRO information healthcare professionals (HCPs) find useful and what the perceived barriers for routinely assessing PROs are.
Procedure
A total of 352 pediatric HCPs (43% male) from 52 countries completed a semistructured online 28‐item questionnaire. Descriptive statistics (percentages) were used to identify highly important PRO information and perceived barriers. HCPs’ perceived barriers were compared according to gender, years of work experience, and country using a Fishers exact test.
Results
The five highest ranked PRO topics relevant in routine assessment by HCPs were as follows: pain (98%), feeling sad or depressed (96%), overall physical symptoms (95%), problems with therapy adherence (94%), and overall emotional issues (93%). Five lowest ranked topics were as follows: difficulties praying (50%), other spiritual concerns (55, 56, and 60%), and feeling bored (60%). Barriers for assessing PROs included: time (58%), insufficient staff (49%), logistics (32%), and financial resources (26%). Providers from developing countries more often reported barriers concerning insufficient staff, logistics, and financial resources.
Conclusions
HCPs strongly value the use of physical and psychosocial PROs within pediatric oncology practice, but mainly perceive organizational barriers for routine assessment. To successfully integrate PROs, efforts should be made to address HCP‐perceived barriers, such that patient‐reported problems can be detected and timely referrals made.
PDF
