Patient Related Outcome Measures最新文献

{"title":"Patient-Reported Outcomes Associated with Treatments for Testicular Cancer: A Systematic Review.","authors":"Rebecca Mercieca-Bebber,&nbsp;Sayeda Kamrun Naher,&nbsp;Orlando Rincones,&nbsp;Allan Ben Smith,&nbsp;Martin R Stockler","doi":"10.2147/PROM.S242754","DOIUrl":"https://doi.org/10.2147/PROM.S242754","url":null,"abstract":"<p><strong>Background: </strong>Testicular cancer and its treatment can have major short- and long-term effects on the health-related quality of life of those affected. This systematic review aims to summarise patient-reported outcome (PRO) data concerning health-related quality of life, functional impacts and common side-effects of treatments for testicular cancer.</p><p><strong>Methods: </strong>We systematically searched Medline OVID, CINAHL, PubMed, Embase and the Patient-Reported Outcomes Over Time In Oncology (PROMOTION) databases from inception to 25 March 2020, using \"testicular cancer\" and \"PRO\" search terms developed in conjunction with a medical librarian. Two authors screened abstracts and full-text articles for studies that reported primary PRO data related to the treatment of testicular cancer including at least 50 participants. We excluded psychosocial data as this was included in our companion review. Data were extracted by three reviewers, and quality was assessed by two reviewers using QUAL-SYST. Studies with a quality of score over 65% were included in our narrative synthesis.</p><p><strong>Results: </strong>A total of 1831 records were identified via our database searches and 41 met inclusion criteria. Of these, 35 included participants who had chemotherapy. Twenty-eight different PRO measures were used across the 41 studies. Of the 41 studies, 29 had quality scores over 65% and were included in our narrative synthesis. We found that chemotherapy was generally associated with a higher side-effect burden than other treatments, and higher burden was associated with higher doses of chemotherapy. Hearing problems, peripheral neuropathy, and Raynaud's phenomena were particularly common side-effects. Problems with sexual functioning were associated with chemotherapy, radiotherapy and surgery.</p><p><strong>Discussion: </strong>While many studies found that between-treatment differences resolved within the first 12 months since diagnosis, there were many long-term and dose-dependent impacts associated with chemotherapy and radiotherapy across PRO domains. Offering information about these aspects, and information about expected survival outcomes, will help inform, prepare, and empower patients to make decisions about treatment aligned with their preferences and personal situations.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"129-171"},"PeriodicalIF":2.1,"publicationDate":"2021-06-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/43/7a/prom-12-129.PMC8197618.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39244033","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}

{"title":"Inter-Day Test-Retest Reproducibility of the CAT, CCQ, HADS and EQ-5D-3L in Patients with Severe and Very Severe COPD.","authors":"Henrik Hansen,&nbsp;Nina Beyer,&nbsp;Anne Frølich,&nbsp;Nina Godtfredsen,&nbsp;Theresa Bieler","doi":"10.2147/PROM.S306352","DOIUrl":"https://doi.org/10.2147/PROM.S306352","url":null,"abstract":"<p><strong>Introduction: </strong>In patients with COPD, the COPD Assessment Test (CAT), Clinical COPD Questionnaire (CCQ), Hospital Anxiety and Depression Scale (HADS) and EuroQol 5D (EQ-5D-3L) are widely used patient reported outcome measures (PROMs) of respiratory symptoms, anxiety, depression and quality of life. Despite established validity, responsiveness and minimal important change (MIC), the reproducibility and especially important agreement parameters remain unreported in these frequently used PROMs. The aim of this study was to investigate the inter-day test-retest reliability and agreement of the CAT, CCQ, HADS and EQ-5D-3L in patients with severe and very severe COPD (FEV1 <50%) eligible for hospital-based pulmonary rehabilitation.</p><p><strong>Patients and methods: </strong>Fifty patients (22 females, mean [SD] age 67 [9] yrs.; FEV₁ 32[9] %; 6-minute walk distance 347 [102] meters; CAT 21 [6] points; BMI: 26 [6] kg/m²) completed the questionnaires (CAT, CCQ, HADS, EQ-5D-3L) in combination with functional performance test instructed by one assessor on test-day one (T1) and by another assessor 7-10 days later on test-day two (T2).</p><p><strong>Results: </strong>The inter-day test-retest reliability ICC was 0.88 (LL_95CI: 0.80) for CAT; 0.69 (LL_95CI: 0.46) for CCQ; 0.86 (LL_95CI: 0.75) and 0.90 (LL_95CI: 0.82) for HADS-anxiety (A) and depression (D) and 0.87 (LL_95CI: 0.76) for EQ-5D-VAS. The corresponding agreements within a single measurement (standard error of measurement, SEM) and for repeated measurement errors (smallest real difference, SRD) were respectively 2.1 and 2.9 points for CAT; 0.5 and 0.7 points for CCQ total; 1.3 and 1.9 points for HADS-A; 0.9 and 1.3 points for HADS-D and 6.8 and 9.7 VAS-score for EQ-5D-3L, respectively. Ceiling/flooring effect was present in <5% for all questionnaires.</p><p><strong>Conclusion: </strong>In patients with severe and very severe COPD, the CAT, CCQ, HADS and EQ-5D-3L questionnaires presented moderate to excellent inter-day test-retest reliability, and no floor or ceiling effect was documented for any of the questionnaires. Only CAT and HADS had an acceptable SRD below the established MIC for assessing change over time on group level, and none of the PROMS were fit to assess individual changes over time.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"117-128"},"PeriodicalIF":2.1,"publicationDate":"2021-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/b2/55/prom-12-117.PMC8179805.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39075974","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}

{"title":"Patient-Centered Care and Associated Factors at Public and Private Hospitals of Addis Ababa: Patients' Perspective.","authors":"Frehiwot Birhanu, Kiddus Yitbarek, Animut Addis, Dereje Alemayehu, Nigusie Shifera","doi":"10.2147/PROM.S301771","DOIUrl":"10.2147/PROM.S301771","url":null,"abstract":"<p><strong>Background: </strong>Patient-centered care is a practice of caring for patients in ways that are valuable to the individual patient and families. Implementation of the practice is a common problem worldwide. In Ethiopia, the available information is limited and is largely skewed to certain dimensions of the practice.</p><p><strong>Objective: </strong>To assess the patient-centered health care practice and associated factors among public and private general hospitals of Addis Ababa 2020.</p><p><strong>Methods: </strong>An institution-based comparative cross-sectional study was conducted in two public, and seven private general hospitals located in Addis Ababa from April 08 to May 20, 2020. A multistage sampling technique was employed to select the study participants. Data were collected using an interviewer-administered structured questioner, then entered into Epi-data version 3.1, and finally analyzed using SPSS version 25. Multivariable logistic regression was used to identify independent predictors of clients' perceived patient-centered care. Statistical significance was declared at p-value <0.05 and adjusted odds ratio with 95% confidence interval.</p><p><strong>Results: </strong>A total of 570 patients were involved with 99.8% response rate. About 49% (95% CI: 45.0-53.1) of patients rated the practice as good. It was 27.8% (95% CI: 22.5-33.1), and 70.2% (95% CI: 64.6-75.4) for public, and private hospitals, respectively Hospital type (AOR:0.21; 95% CI: 0.13-0.35), service easiness (AOR:3.3; 95% CI: 2.0-5.8), hospital attractiveness (AOR:2.3; 95% CI: 1.2,4.5), privacy to access care (AOR:2.0; 95% CI: 1.1,4.1), information on plan of care (AOR:2.3; 95% CI; 1.1,4.6), information on medication (AOR:3.1; 95% CI; 1.5,6.3), and perceived intimacy with the provider (AOR: 0.4; 95% CI;0.2,0.8) were the factors associated with the practice.</p><p><strong>Conclusion: </strong>Even though providing patient-centered care has been the focus of quality improvement in Ethiopia, this study showed it is mostly being implemented from the traditional provider-centered approach and public hospitals were lower in practice than private hospitals.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"107-116"},"PeriodicalIF":2.1,"publicationDate":"2021-05-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/4f/bf/prom-12-107.PMC8144361.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39026475","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}

{"title":"A Discrete Choice Experiment to Derive Health Utilities for Aromatic L-Amino Acid Decarboxylase (AADC) Deficiency.","authors":"Adam B Smith, Andria Hanbury, Jennifer A Whitty, Katharina Buesch","doi":"10.2147/PROM.S294628","DOIUrl":"10.2147/PROM.S294628","url":null,"abstract":"<p><strong>Purpose: </strong>Deriving health utilities for rare medical conditions such as aromatic L-amino acid decarboxylase (AADC) deficiency poses challenges. The rarity of AADC deficiency and the fact that this genetic condition often presents in very young children means that robust utility values cannot be derived from the child or their parent/caregiver. Alternative approaches, eg, discrete choice experiments (DCE), are required in order to provide health utilities. The aim of the study was to generate health utilities for AADC deficiency using a DCE.</p><p><strong>Methods: </strong>The DCE was completed online by panel participants from a UK representative sample. The DCE comprised 6 AADC deficiency attributes (2-6 levels): mobility, muscle weakness, oculogyric crises, feeding ability, cognitive impairment and screaming. These were identified from published literature, clinician input, parent interviews and expert opinion. Participants were presented with 10 choice sets specified using an orthogonal design, including a repeat task to evaluate choice consistency. Participants were presented with 5 health state vignettes prior to the DCE. These were used to elicit time trade-off (TTO) utilities. Multinomial logit models were estimated for the DCE data. The TTO utilities for the worst/best health states were used as anchors to convert indirect DCE part-worth utilities to health utilities.</p><p><strong>Results: </strong>A total of 1596 participants completed the DCE. The majority (70.7%) gave consistent responses to the repeated choice task; only 1.7% (27) always chose the same alternative for every choice set. Five models were evaluated. There was one preference reversal (\"sitting unaided\"/\"standing with assistance\") occurring in all models; these two mobility level coefficients were set to be equal in the final model. Rescaled utilities ranged from 0.494 to 0.7279, corresponding to the worst (633233) and best (111111) health states.</p><p><strong>Conclusion: </strong>Health utilities were derived for AADC deficiency through a DCE. These will be used for a cost-effectiveness model of an AADC deficiency treatment.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"97-106"},"PeriodicalIF":2.1,"publicationDate":"2021-05-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/f2/d5/prom-12-97.PMC8127000.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39000616","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}

{"title":"Top Priorities for Health Service Improvements Among Australian Oncology Patients.","authors":"Alix Hall,&nbsp;Jamie Bryant,&nbsp;Robert Sanson-Fisher,&nbsp;Alice Grady,&nbsp;Anthony Proietto,&nbsp;Christopher M Doran","doi":"10.2147/PROM.S291794","DOIUrl":"https://doi.org/10.2147/PROM.S291794","url":null,"abstract":"<p><strong>Objective: </strong>To determine among a sample of Australian cancer patients receiving outpatient oncology care: 1) the most frequently endorsed general health service improvements selected by patients; 2) for the three most endorsed general health service improvements, the proportion of participants endorsing specific health service changes; and 3) sociodemographic, disease and treatment characteristics associated with the most frequently endorsed general health service improvements.</p><p><strong>Methods: </strong>A cross-sectional survey was conducted across six outpatient oncology treatment units located in New South Wales, Australia. Patients receiving chemotherapy for any cancer diagnosis at any of six oncology services were recruited. Participants completed an online survey which included the Consumer Preferences Survey. Logistic regression analyses were conducted to identify sociodemographic, disease and treatment characteristics associated with frequently endorsed health service improvements.</p><p><strong>Results: </strong>A total of 879 eligible patients initiated the survey (72% consent rate). Participants selected a median of two health service improvements. The three most wanted improvements were car parking (56%), up-to-date information about treatment or condition progress (19%), and hospital catering (17%). Age was the only characteristic significantly associated with identifying car parking as a needed improvement.</p><p><strong>Conclusion: </strong>Achieving high quality cancer care requires understanding of the views and experiences of patients about the quality of care they receive. Car parking and access to information were the two most frequently endorsed general health service changes desired by this sample of participants.</p><p><strong>Practice implication: </strong>Future studies could examine whether enacting changes as per patient feedback improves patient perceptions of quality of care, and health outcomes.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"83-95"},"PeriodicalIF":2.1,"publicationDate":"2021-05-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/c6/08/prom-12-83.PMC8114575.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38987564","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}

{"title":"Test-Retest Reliability and Clinical and Research Validity of the 'Quality of Life Impact and Concerns' (QoLI&C) Measure.","authors":"Tina S Gambling,&nbsp;Andrew F Long","doi":"10.2147/PROM.S303978","DOIUrl":"https://doi.org/10.2147/PROM.S303978","url":null,"abstract":"<p><p>Hip dysplasia is a significant public health issue, representing the single largest cause for total hip arthroplasty in young adults. To gain insight into patient concerns and the impact of hip dysplasia on young adults, we developed a patient-centred outcome measure, the 'Quality of Life Impact and Concerns' (QoLI&C) measure. This short report provides additional evidence on test-retest reliability and suggests refinements to the measure to enhance its research and clinical utility.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"77-81"},"PeriodicalIF":2.1,"publicationDate":"2021-05-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/0a/4d/prom-12-77.PMC8110952.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38978711","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}

{"title":"Psychometric Properties of New Subscales of the Ostomy Adjustment Scale: A Cross-Sectional Study.","authors":"Kirsten Lerum Indrebø, Anny Aasprang, Torill Elin Olsen, John Roger Andersen","doi":"10.2147/PROM.S300604","DOIUrl":"10.2147/PROM.S300604","url":null,"abstract":"<p><strong>Background: </strong>The Ostomy Adjustment Scale (OAS), which consists of an overall sum score along with 34 single-item scores, has been frequently used to measure self-reported adjustment to life with an ostomy. However, it is unknown whether the OAS can be divided into meaningful thematic subscales that may make it easier to administer and to apply in a clinical feedback system.</p><p><strong>Purpose: </strong>The purpose of this study was to specify thematic OAS subscales and evaluate their psychometric properties.</p><p><strong>Patients and methods: </strong>A cross-sectional study was conducted with 302 patients across Norway having colostomy, ileostomy, or urostomy. The OAS items were divided into different subscales by expert nurses and patients based on clinical and theoretical considerations. The overall structural validity of this analysis of the OAS was examined using robust confirmatory factor analysis. We evaluated the overall goodness of fit using the root mean square error of approximation (RMSEA), the comparative fit index (CFI) and the Tucker-Lewis index (TLI). Factor loadings from the confirmatory factor analysis were used to calculate composite reliability values for the new OAS scales.</p><p><strong>Results: </strong>The OAS was divided into seven subscales. The overall structure validity was acceptable with RMSEA = 0.053 (90% CI, 0.045-0.060), CFI = 0.913 and TLI = 0.904. The composite reliability values of all scales were >0.70.</p><p><strong>Conclusions: </strong>The OAS can be divided into seven clinically meaningful subscales with acceptable psychometric properties.</p><p><strong>Trial register: </strong>ClinicalTrials.gov Registration Number: NCT03841071. Date 18. February 2019 retrospectively registered.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"65-75"},"PeriodicalIF":2.1,"publicationDate":"2021-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/f7/53/prom-12-65.PMC7979334.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25520864","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}

{"title":"Factors Associated with Medication-Related Burden Quality of Life (MRB-QoL) in Community-Dwelling Adults with Long-Term Conditions: An Exploratory Study.","authors":"Mohammed A Mohammed,&nbsp;Rebekah J Moles,&nbsp;Timothy F Chen","doi":"10.2147/PROM.S245534","DOIUrl":"https://doi.org/10.2147/PROM.S245534","url":null,"abstract":"<p><strong>Background: </strong>The Medication-Related Burden Quality of Life (MRB-QoL) tool has been developed to measure the burden of medications on functioning and wellbeing from a patient perspective. However, predictors of MRB-QoL were not reported in greater detail in the validation study. This study aimed to explore factors associated with MRB-QoL to see whether there is any new information that calls for further research.</p><p><strong>Methods: </strong>Analysis of data from the MRB-QoL validation study was undertaken. Outcome variables were domains of the MRB-QoL (Routine and Regimen Complexity, Psychological Burden, Functional and Role Limitation, Therapeutic Relationship, and Social Burden). Explanatory variables were patient age; disease-related factors; and medication-related factors, such as number of medications, complexity of medication regimen (measured by the Medication Regimen Complexity Index [MRCI]), and exposure to medications with anticholinergic and sedative effects (measured by the Drug Burden Index [DBI]). Linear regression analyses were used to identify factors associated with the MRB-QoL.</p><p><strong>Results: </strong>The study included 367 participants (52.1% male), with a median age of 64 years. In multivariable regression analyses, an increase in the DBI was significantly associated with poorer Psychological wellbeing (<i>β</i>=-0.15, <i>p</i><0.001) and Functional and Role Limitation (<i>β</i>=-1.79, <i>p</i><0.001). Living with three or more medical conditions was significantly associated with poorer Psychological wellbeing (<i>β</i>=-0.21, <i>p</i><0.001). Age was significantly associated with all domains of the MRB-QoL (<i>β</i>=0.28 to 0.55). Polypharmacy and MRCI were not associated with any of the MRB-QoL domains.</p><p><strong>Conclusion: </strong>In this sample of community-dwelling adults with multiple medications, the DBI was independently associated with the Psychological Burden and Functional and Role Limitation domains of the MRB-QoL. This study provides preliminary evidence on factors affecting medication-related quality of life outcomes from a patient perspective. Future longitudinal studies, along with further psychometric testing of the MRB-QoL measure, are warranted to better understand predictors of MRB-QoL.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"55-63"},"PeriodicalIF":2.1,"publicationDate":"2021-03-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/50/35/prom-12-55.PMC7936687.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25451606","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}

{"title":"Psychometric Validation of the EQ-5D-3L in Patients with Nontuberculous Mycobacterial (NTM) Lung Disease Caused by <i>Mycobacterium avium</i> Complex (MAC).","authors":"Anuj Shah, Xinyi Ng, Ruchit Shah, Caitlyn Solem, Ping Wang, Marko Obradovic","doi":"10.2147/PROM.S272075","DOIUrl":"10.2147/PROM.S272075","url":null,"abstract":"<p><strong>Purpose: </strong>This analysis evaluated the psychometric properties of the EQ-5D-3L among patients with <i>Mycobacterium avium</i> complex lung disease (MAC-LD).</p><p><strong>Methods: </strong>Data from the Phase III CONVERT trial were analyzed. Study measures including the EQ-5D-3L, St. George's Respiratory Questionnaire (SGRQ), the 6-minute walk test (6MWT), and percent predicted forced expiratory volume in 1 second (ppFEV₁) were collected at baseline, month 3 (M3), month 4 (M4; only 6MWT), and month 6 (M6). Item characteristics and validity were evaluated at baseline. Test-retest reliability was assessed using intraclass correlation coefficients (ICC) and a weighted kappa statistic among a subgroup of stable patients. Validity was tested by evaluating correlations of the EQ-5D-3L index/visual analogue scale (VAS) scores with SGRQ and 6MWT and comparing mean index/VAS scores across known groups defined using 6MWT and ppFEV₁. Responsiveness of the EQ-5D-3L was assessed using 6MWT, SGRQ, ppFEV₁, and culture conversion as anchors.</p><p><strong>Results: </strong>The index score was subject to ceiling effects, with 32.6% of patients reporting perfect health at baseline. ICCs for the index (0.80) and VAS (0.85) scores and weighted kappas for the domains (0.5-0.72) indicated adequate test-retest reliability. Correlations between the index/VAS scores and related domains of the SGRQ and 6MWT were as hypothesized (0.31-0.62), and the mean index/VAS scores were significantly different between the 6MWT and ppFEV₁ known groups (p<0.05), supporting the validity of the EQ-5D-3L. No evidence was found supporting the responsiveness of the EQ-5D-3L to changes in any of the anchors.</p><p><strong>Conclusion: </strong>EQ-5D-3L exhibited evidence of validity and reliability but poor responsiveness to clinically meaningful changes in patients with MAC-LD.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"45-54"},"PeriodicalIF":2.1,"publicationDate":"2021-02-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/35/df/prom-12-45.PMC7920600.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25434759","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}

{"title":"Women Diagnosed with Ovarian Cancer: Patient and Carer Experiences and Perspectives.","authors":"Sharolin Boban,&nbsp;Jenny Downs,&nbsp;Jim Codde,&nbsp;Paul A Cohen,&nbsp;Caroline Bulsara","doi":"10.2147/PROM.S272688","DOIUrl":"https://doi.org/10.2147/PROM.S272688","url":null,"abstract":"<p><strong>Purpose: </strong>By directly engaging with women diagnosed with ovarian cancer, this study aimed to explore and identify their view of the health symptoms and outcomes that matter most to them as they traverse their disease pathway.</p><p><strong>Background: </strong>Patient-reported outcome measures in ovarian cancer have tended to focus on physical symptoms rather than the more complex psychosocial aspects of living with the disease. Using a \"ground-up approach\", this study sought to comprehensively understand the health concerns that matter most to women with ovarian cancer as a first step in generating items for development into an ovarian cancer-specific patient-reported outcome measure.</p><p><strong>Patients and methods: </strong>Following an extensive literature review, we sought to capture the \"patient voice\" through a qualitative descriptive approach including a community conversation with ovarian cancer patients, their carers and clinicians, and interviews and focus groups with women with ovarian cancer. Thirteen women were interviewed individually, and two focus groups were conducted. A template thematic analysis was used to analyze the data.</p><p><strong>Results: </strong>Key themes included challenges related to clinical diagnosis, treatment phase, altered relationships with family/friends, financial issues, relationships with health professionals and coping strategies. Within each key theme, several sub-themes emerged that were identified as various challenges experienced by participants. Diagnostic delay, chemotherapy and surgery-related challenges, negative impact of sexual well-being on partner relationship, communicational challenges with health professionals were among the few issues identified. In addition, self-empowerment was identified as a coping mechanism among participants.</p><p><strong>Conclusion: </strong>By identifying priorities for women diagnosed with ovarian cancer we have highlighted the need for strategies to reduce diagnostic delays and improve quality of life for these women. Data will inform the development of an ovarian cancer-specific patient-reported outcome measure.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"33-43"},"PeriodicalIF":2.1,"publicationDate":"2021-02-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/2e/84/prom-12-33.PMC7896761.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25398782","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}