Journal of Patient-Reported Outcomes最新文献

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Transition of care in a Danish context: translation, cross-cultural adaptation and content validation of CTM-15 and PACT-M. 丹麦背景下的护理过渡:CTM-15 和 PACT-M 的翻译、跨文化改编和内容验证。
IF 2.7
Journal of Patient-Reported Outcomes Pub Date : 2024-06-10 DOI: 10.1186/s41687-024-00739-3
Merete Ajstrup, Caroline Trillingsgaard Mejdahl, David Høyrup Christiansen, Lene Kongsgaard Nielsen
{"title":"Transition of care in a Danish context: translation, cross-cultural adaptation and content validation of CTM-15 and PACT-M.","authors":"Merete Ajstrup, Caroline Trillingsgaard Mejdahl, David Høyrup Christiansen, Lene Kongsgaard Nielsen","doi":"10.1186/s41687-024-00739-3","DOIUrl":"10.1186/s41687-024-00739-3","url":null,"abstract":"<p><strong>Background: </strong>Transition of care from hospitalisation to home is a complex process with potential patient safety risks, especially for patients with multimorbidity. Traditionally, the quality of transition of care has been evaluated primarily through readmission rates. However, interpreting the readmission rates presents challenges, and readmission rates fail to capture the patient's perspective on the quality of the care transition. Insight into the patient's experience with their care or a health service can be provided through the use of patient-reported experience measures (PREMs), and the two PREMs Care Transitions Measure 15 (CTM-15) and Partners at Care Transitions Measure part 1 and 2 (PACT-M1 and PACT-M2) assess on the quality of transition of care from the patients' perspective. The aim of this study was to translate, culturally adapt, and assess content validity of CTM-15, PACT-M1, and PACT-M2 for Danish-speaking patients with multimorbidity.</p><p><strong>Methods: </strong>A two-step approach was used for content validation, involving cognitive debriefing and interviews with patients, representing the target group, as well as quantitative data collection from healthcare professionals representing all three sectors of the Danish healthcare system. The patients were systematically interviewed regarding the aspects of content validity; comprehensibility, relevance, and comprehensiveness. The healthcare professionals assessed the relevance and comprehensiveness of each item through questionnaires, allowing the calculation of a content validity index (CVI). An item CVI ≥ 0.78 is considered good.</p><p><strong>Results: </strong>The results of the qualitative data indicated that both CTM-15 and the PACT-M questionnaires were considered relevant, and comprehensible, and comprehensive to the target group. The CVI computed at item level determined that PACT-M1 and PACT-M2 demonstrated excellent content validity among the healthcare professionals, whereas the CVI for two items of the CTM-15 fell below the threshold value for \"good\".</p><p><strong>Conclusion: </strong>The Danish versions of the PACT-M questionnaires demonstrated good content validity, and the CTM-15 demonstrated acceptable content validity based on qualitative data from patients and quantitative data from healthcare professionals. Further validation of the questionnaires, by assessing their construct validity and reliability is recommended.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11164838/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141296851","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The achievement of pre-operative expectations in patients undergoing knee arthroplasty: a cohort study evaluating unique patient goals. 膝关节置换术患者术前期望的实现情况:一项评估患者独特目标的队列研究。
IF 2.7
Journal of Patient-Reported Outcomes Pub Date : 2024-06-06 DOI: 10.1186/s41687-024-00734-8
Sascha Karunaratne, Ian Andrew Harris, Mark Horsley, Lyndal Trevena, Michael Solomon
{"title":"The achievement of pre-operative expectations in patients undergoing knee arthroplasty: a cohort study evaluating unique patient goals.","authors":"Sascha Karunaratne, Ian Andrew Harris, Mark Horsley, Lyndal Trevena, Michael Solomon","doi":"10.1186/s41687-024-00734-8","DOIUrl":"10.1186/s41687-024-00734-8","url":null,"abstract":"<p><strong>Background: </strong>Total knee arthroplasty (TKA) is a common procedure employed to treat end-stage osteoarthritis. While TKA is generally believed to have acceptable outcomes, many patients report pain or functional deficits not in line with their expectation following the procedure. It has been postulated that patient's pre-operative expectations regarding post-operative treatment outcomes play a significant role in satisfaction. It is therefore important to assess if the outcomes of surgery truly align with patient's individual expectations. Thus, the purpose of this study was to determine the degree to which patient expectations of TKA are achieved and the contribution of TKA to achieving patient goals one year after surgery.</p><p><strong>Methods: </strong>A consecutive sample of 110 patients booked for total knee arthroplasty were asked to identify their most important goals to inform the Direct Questioning of Objectives Index (DQO Index, range 0 to 1) and identify their surgical goals and grade their expectation that a knee arthroplasty would achieve each goal on an 11-point scale. One year after surgery, the DQO Index was repeated to assess their current ability to achieve each pre-operative goal, and asked to estimate the contribution of their knee arthroplasty in achieving each goal. Mean differences between baseline and one year follow-up were calculated regarding the DQO Index and expected achievement of pre-operative goals.</p><p><strong>Results: </strong>According to the DQO Index at one year, patients improved from a poor quality of life pre-operatively (mean ± standard deviation: 0.20 ± 0.18) to moderately high quality of life (mean ± standard deviation: 0.71 ± 0.21) reflecting a large improvement in ability to achieve each goal. Although achievement improved, for each goal, the patient estimates of the extent to which the knee arthroplasty had contributed to achieving the goal was lower than their initial expectation provided pre-operatively (mean difference range: 0.6 to 1.9 on an 11-point scale).</p><p><strong>Conclusion: </strong>Patients undergoing TKA have high expectations that their surgery will address their primary goals. Despite surgery largely achieving these goals (improved pain and function), the extent to which the goals were achieved was lower than patients had expected pre-operatively.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-06-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11156622/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141262789","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The Swedish Stroke Self-Efficacy Questionnaire: translation and cross-cultural adaptation. 瑞典脑卒中自我效能感问卷:翻译与跨文化适应。
IF 2.7
Journal of Patient-Reported Outcomes Pub Date : 2024-06-05 DOI: 10.1186/s41687-024-00735-7
Erika Klockar, Maya Kylén, Linnea McCarthy, Lena von Koch, Catharina Gustavsson, Fiona Jones, Marie Elf
{"title":"The Swedish Stroke Self-Efficacy Questionnaire: translation and cross-cultural adaptation.","authors":"Erika Klockar, Maya Kylén, Linnea McCarthy, Lena von Koch, Catharina Gustavsson, Fiona Jones, Marie Elf","doi":"10.1186/s41687-024-00735-7","DOIUrl":"10.1186/s41687-024-00735-7","url":null,"abstract":"<p><strong>Objective: </strong>To translate and cross-culturally adapt the Stroke Self-Efficacy Questionnaire (SSEQ) from English to Swedish and to evaluate psychometric properties of the questionnaire.</p><p><strong>Methods: </strong>A cross-sectional study design, where the translation followed a process including initial translation, synthesis, backward translation, expert committee, and pretest. Content validity was assessed using Content validity index (CVI). Psychometric assessments included floor-ceiling effects and internal consistency.</p><p><strong>Results: </strong>Language and cultural congruence were achieved, and content validity index scores were high (0.923-1). The psychometric evaluations provided acceptable outcomes concerning internal consistency, with Cronbach's alpha scores for the total scale (0.902), the activities subscale (0.861) and the self-management subscale (0.818) respectively. Ceiling effects were evident, but no floor effects.</p><p><strong>Conclusion: </strong>This study found the Swedish version of the SSEQ promising as a tool for assessment of self-efficacy in a Swedish stroke care setting, although further psychometric assessments are recommended in future studies.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11153470/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141248929","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Patient interpretations of patient-reported outcome measures to assess bowel urgency: qualitative interviews in ulcerative colitis. 患者对用于评估肠道紧迫性的患者报告结果指标的解释:溃疡性结肠炎定性访谈。
IF 2.7
Journal of Patient-Reported Outcomes Pub Date : 2024-05-31 DOI: 10.1186/s41687-024-00733-9
Vipul Jairath, Theresa Hunter Gibble, Richard Moses, Brittany Klooster, Leighann Litcher-Kelly, Marisa Walker, Madison C Bernstein, Kaelyn Rupinski, Megan McLafferty, Simon Travis, Marla Dubinsky
{"title":"Patient interpretations of patient-reported outcome measures to assess bowel urgency: qualitative interviews in ulcerative colitis.","authors":"Vipul Jairath, Theresa Hunter Gibble, Richard Moses, Brittany Klooster, Leighann Litcher-Kelly, Marisa Walker, Madison C Bernstein, Kaelyn Rupinski, Megan McLafferty, Simon Travis, Marla Dubinsky","doi":"10.1186/s41687-024-00733-9","DOIUrl":"10.1186/s41687-024-00733-9","url":null,"abstract":"<p><strong>Objectives: </strong>Bowel urgency is an impactful core symptom of ulcerative colitis (UC). Patient-reported outcome (PRO) questionnaires have been developed and used to assess the patient experience of this important symptom. The objective of this paper is to present evidence from qualitative research conducted to support the use and interpretation of select PRO questionnaires to assess bowel urgency related to the UC patient experience.</p><p><strong>Methods: </strong>Qualitative interviews were conducted with ten adults with a clinician-confirmed diagnosis of moderately to severely active UC. Interviews aimed to document patient interpretation of modified recall periods for the Urgency Numeric Rating Scale (Urgency NRS), two global assessments (i.e., the Patient Global Impression of Severity [PGIS] and Patient Global Impression of Change [PGIC]), and four items (Items 11, 16, 23, and 26) of the Inflammatory Bowel Disease Questionnaire (IBDQ), and explore the patient perspective of meaningful change on these questionnaires.</p><p><strong>Results: </strong>Both modified Urgency NRS versions (with 7-day or 3-day recall period) were interpreted as intended by most patients (≥ 88.9%), and slightly more than half of patients (60.0%) reported that the 7-day recall period was more relevant to their bowel urgency experience. Patients reported thinking of bowel urgency (≥ 80.0%) or bowel urgency-related accidents (70.0% of patients) when interpreting the global assessments and IBDQ items. Most patients reported a 1- to 3-point change as the smallest meaningful improvement that would be meaningful on the Urgency NRS (similar to findings on other questionnaires).</p><p><strong>Conclusion: </strong>Adults with UC can understand and respond to the Urgency NRS with modified recall periods (i.e., 7-day or 3-day), interpret the conceptual content of the PGIS, PGIC, and select IBDQ items to be inclusive of bowel urgency and bowel urgency-related accidents, and select answers representing meaningful improvements on the Urgency NRS, PGIS, PGIC, and IBDQ item response scales. These results further contribute patient-centered data to existing UC and bowel urgency research.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-05-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11143159/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141179986","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Crosswalk between the PROMIS physical function CAT and PROMIS upper extremity CAT v1.2 in a hand surgery population. 手外科人群中 PROMIS 身体功能 CAT 与 PROMIS 上肢功能 CAT v1.2 之间的交叉对比。
IF 2.4
Journal of Patient-Reported Outcomes Pub Date : 2024-05-30 DOI: 10.1186/s41687-024-00736-6
Miranda J Rogers, Joshua R Daryoush, Chong Zhang, Amy Cizik, Angela P Presson, Nikolas H Kazmers
{"title":"Crosswalk between the PROMIS physical function CAT and PROMIS upper extremity CAT v1.2 in a hand surgery population.","authors":"Miranda J Rogers, Joshua R Daryoush, Chong Zhang, Amy Cizik, Angela P Presson, Nikolas H Kazmers","doi":"10.1186/s41687-024-00736-6","DOIUrl":"10.1186/s41687-024-00736-6","url":null,"abstract":"<p><strong>Background: </strong>There is no gold standard patient-reported outcome measure (PROM) in hand surgery. As a result, a diverse array of PROM instruments have been utilized across centers over time. Lack of score interchangeability limits the ability to compare or conglomerate scores when new instruments are introduced. Our aim was to develop a linkage for the PROMIS UE CAT v1.2 and PROMIS PF CAT scores and develop crosswalk tables for interconversion between these PROMs.</p><p><strong>Methods: </strong>Retrospective review was conducted to identify adult (≥ 18y) patients seen by orthopaedic hand surgeons at a single academic tertiary care hospital who had completed PROMIS UE CAT v1.2 and PROMIS PF CAT score at the same visit. For those with multiple visits, only one randomly selected visit was included in the analyses. Pearson's correlation was calculated to determine the linear relationship between the scores. Linkage from PF to UE was performed utilizing several commonly utilized equating models (identity, mean, linear, equipercentile and circle-arc methods). The performance of the models was assessed using intraclass correlation (ICC) between observed PROMIS UE CAT v1.2 and estimated PROMIS UE CAT v1.2 scores generated using the model as well as Root Mean Square Error (RMSE). The model chosen as the 'best' was further assessed for population invariance using root expected mean squared difference (REMSD) where < 0.08 were considered good.</p><p><strong>Results: </strong>Of 10,081 included patients, mean age was 48.3 (SD = 17.0), and 54% were female (5,477/10,081). Mean UE CAT v1.2 and PF CAT scores were 37 (SD = 9.8) and 46 (SD = 10.0), respectively. There was a strong correlation between the scores (Pearson correlation r = 0.70). All methods performed acceptably (ICC ≥ 0.66 and RMSE < = 7.52 for all). The equipercentile method had the highest ICC (ICC = 0.70 (95% CI 0.69-0.71)) while the mean and circle arc methods had the lowest RMSE. The circle arc method is the most reliable with the smallest standard error and has satisfactory population invariance across age group (REMSD 0.065) and sex (REMSD 0.036).</p><p><strong>Conclusions: </strong>Crosswalk tables to be used for bidirectional conversion between scores were created.</p><p><strong>Level of evidence: </strong>III.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":null,"pages":null},"PeriodicalIF":2.4,"publicationDate":"2024-05-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11139816/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141179985","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Quality of life in individuals with neurofibromatosis type 1 associated cutaneous neurofibromas: validation of the Dutch cNF-Skindex. 1 型神经纤维瘤相关皮肤神经纤维瘤患者的生活质量:荷兰 cNF-Skindex 验证。
IF 2.7
Journal of Patient-Reported Outcomes Pub Date : 2024-05-29 DOI: 10.1186/s41687-024-00732-w
Britt A E Dhaenens, Sarah A van Dijk, Laura Fertitta, Walter Taal, Pierre Wolkenstein, Rianne Oostenbrink
{"title":"Quality of life in individuals with neurofibromatosis type 1 associated cutaneous neurofibromas: validation of the Dutch cNF-Skindex.","authors":"Britt A E Dhaenens, Sarah A van Dijk, Laura Fertitta, Walter Taal, Pierre Wolkenstein, Rianne Oostenbrink","doi":"10.1186/s41687-024-00732-w","DOIUrl":"10.1186/s41687-024-00732-w","url":null,"abstract":"<p><strong>Background: </strong>Almost all patients with Neurofibromatosis type 1 (NF1) develop cutaneous neurofibroma (cNF), benign dermal tumours that have a large impact on the patient's Quality of Life (QoL). The French cNF-Skindex is the first questionnaire to specifically assess cNF-related QoL in patients with NF1. We aimed to adapt and validate a Dutch version of the cNF-Skindex.</p><p><strong>Methods: </strong>The questionnaire was translated using forward and backwards translation, and subsequently administered to a sample of 59 patients on two separate occasions. Feasibility was evaluated by the presence of floor/ceiling effects. Reliability was assessed by evaluating internal consistency and test-retest reliability, by calculating Cronbach's alpha and Spearman's rank correlation coefficients. The EQ-5D-5L and SF-36 were used to evaluate convergent validity, using Spearman's rank correlation coefficients. An exploratory factor analysis was performed to study the data's internal structure. Multivariable linear regression was used to model the relationship between patient characteristics and the cNF-Skindex.</p><p><strong>Results: </strong>The Dutch cNF-Skindex demonstrated excellent feasibility and reliability (Cronbach's alpha 0.96, test-retest correlation coefficient 0.88). Convergent validity was confirmed for the EQ-5D-5L and relevant SF-36 scales. All items and subdomains from the original questionnaire were confirmed following exploratory factor analysis. The patient characteristics included in the multivariable linear regression were not significantly associated with the cNF-Skindex score.</p><p><strong>Conclusions: </strong>The Dutch cNF-Skindex displayed excellent psychometric properties, enabling use in the Netherlands.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-05-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11136889/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141174327","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Correction: Impact of tardive dyskinesia on patients and caregivers: a survey of caregivers in the United States. 更正:迟发性运动障碍对患者和护理人员的影响:美国护理人员调查。
IF 2.7
Journal of Patient-Reported Outcomes Pub Date : 2024-05-17 DOI: 10.1186/s41687-024-00728-6
Rakesh Jain, Rajeev Ayyagari, Debbie Goldschmidt, Mo Zhou, Stacy Finkbeiner, Sam Leo
{"title":"Correction: Impact of tardive dyskinesia on patients and caregivers: a survey of caregivers in the United States.","authors":"Rakesh Jain, Rajeev Ayyagari, Debbie Goldschmidt, Mo Zhou, Stacy Finkbeiner, Sam Leo","doi":"10.1186/s41687-024-00728-6","DOIUrl":"10.1186/s41687-024-00728-6","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-05-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11101382/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140959928","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Correction: Impact of tardive dyskinesia on patients and caregivers: a survey of caregivers in the United States. 更正:迟发性运动障碍对患者和护理人员的影响:美国护理人员调查。
IF 2.7
Journal of Patient-Reported Outcomes Pub Date : 2024-05-17 DOI: 10.1186/s41687-024-00728-6
Rakesh Jain, R. Ayyagari, D. Goldschmidt, Mo Zhou, Stacy Finkbeiner, S. Leo
{"title":"Correction: Impact of tardive dyskinesia on patients and caregivers: a survey of caregivers in the United States.","authors":"Rakesh Jain, R. Ayyagari, D. Goldschmidt, Mo Zhou, Stacy Finkbeiner, S. Leo","doi":"10.1186/s41687-024-00728-6","DOIUrl":"https://doi.org/10.1186/s41687-024-00728-6","url":null,"abstract":"","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-05-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140964215","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Understanding reliability of the observer-reported communication ability measure within Angelman syndrome through the lens of generalizability theory. 从可推广性理论的角度了解安杰尔曼综合症中观察者报告的沟通能力测量的可靠性。
IF 2.7
Journal of Patient-Reported Outcomes Pub Date : 2024-05-14 DOI: 10.1186/s41687-024-00725-9
Dandan Chen, Christina K Zigler, Li Lin, Nicole Lucas, Molly McFatrich, Jennifer Panagoulias, Allyson Berent, Bryce B Reeve
{"title":"Understanding reliability of the observer-reported communication ability measure within Angelman syndrome through the lens of generalizability theory.","authors":"Dandan Chen, Christina K Zigler, Li Lin, Nicole Lucas, Molly McFatrich, Jennifer Panagoulias, Allyson Berent, Bryce B Reeve","doi":"10.1186/s41687-024-00725-9","DOIUrl":"10.1186/s41687-024-00725-9","url":null,"abstract":"<p><strong>Aims: </strong>Caregivers rate improved communication ability as one of the most desired outcomes for successful interventions for individuals with Angelman syndrome (AS). When measuring communication ability in clinical trials, the reliability of such measures is critical for detecting significant changes over time. This study examined the reliability of the Observed-Reported Communication Ability (ORCA) measure completed by caregivers of individuals with AS.</p><p><strong>Methods: </strong>The ORCA measure was completed by 249 caregivers with 170 caregivers completing the ORCA measure again after 5-12 days. Generalizability theory was used to examine the following sources of measurement error in ORCA scores: concepts, subdomains, assessment points, and the interactions among those facets and the object of measurement: communication ability. Three generalizability studies were conducted to understand the reliability of the ORCA measure for different measurement designs. Decision studies were carried out to demonstrate the optimization of measurement procedures of the ORCA measure.</p><p><strong>Results: </strong>G and Phi coefficients of the original measurement design exceeded the 0.80 threshold considered sufficiently reliable to make relative and absolute decisions about the communication ability of individuals with AS based on their caregivers' observed scores. The optimization procedures indicated that increasing the number of communication concepts and/or assessment points leads to more reliable estimates of communication.</p><p><strong>Conclusion: </strong>The ORCA measure was able to reliably distinguish different levels of communication ability among individuals with AS. Multiple assessment points and or more concepts would provide more precise estimates of an individual's communication ability but at the cost of survey fatigue.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11093941/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140923288","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Development and validation of clinical implementation methods for patient-reported outcomes in Japanese multi-center palliative care units. 日本多中心姑息治疗病房患者报告结果的临床实施方法的开发与验证。
IF 2.4
Journal of Patient-Reported Outcomes Pub Date : 2024-05-14 DOI: 10.1186/s41687-024-00730-y
Nao Ito, Azusa Sato, Kana Takeuchi, Tomoko Shigeno, Hiroko Sasaki, Maho Aoyama, Mitsunori Miyashita
{"title":"Development and validation of clinical implementation methods for patient-reported outcomes in Japanese multi-center palliative care units.","authors":"Nao Ito, Azusa Sato, Kana Takeuchi, Tomoko Shigeno, Hiroko Sasaki, Maho Aoyama, Mitsunori Miyashita","doi":"10.1186/s41687-024-00730-y","DOIUrl":"10.1186/s41687-024-00730-y","url":null,"abstract":"<p><strong>Background: </strong>Patient-Reported Outcomes (PROs) are recommended for use in clinical oncology. However, they are not routinely used in professional palliative care practices in Japan. The reasons include both patient and healthcare provider factors and the implementation of PROs. This study aimed to develop and validate clinical implementation methods for PROs in Japanese palliative care units.</p><p><strong>Methods: </strong>The Consolidated Framework for Implementation Research (CFIR) was conducted with four palliative care units in Japan. The study was conducted in six steps: unit assessment, development and implementation of a PRO implementation plan, PRO post-implementation survey and analysis of its utilization, a review of the PRO implementation process, creation of a PRO implementation method in a palliative care unit, and use and verification of the implementation method. Steps 1-5 were the development phase, and step 6 was the verification phase.</p><p><strong>Results: </strong>Interviews were conducted with healthcare providers prior to PRO implementation. Intervention characteristics, patient needs in the palliative care unit, and factors related to the organization were identified as barriers. The implementation plan was developed, and the core members were selected. The implementation procedures were created in the above mentioned steps. PROs were used in the palliative care units. The same was true in the validation phase.</p><p><strong>Conclusions: </strong>This study guided PROs in specialized palliative care unit in a clinical setting. The method was developed and validated for the implementation of PROs in the palliative care unit. In the PRO implementation process, it was important to assess the unit, address the barriers to implementation, and reduce the burden on healthcare providers. Furthermore, healthcare providers had to be supported by the champion, a person responsible for the implementation of PROs in the palliative care unit.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":null,"pages":null},"PeriodicalIF":2.4,"publicationDate":"2024-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11093964/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140923262","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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