Patient-reported Outcome Measures for Women with Vulvar Neoplasia – Current Situation and Future Directions

2013 ◽  
Vol 09 (02) ◽  
pp. 110
Author(s):  
Beate Senn ◽  
Manuela Eicher ◽  
Michael D Mueller ◽  
Sandra Engberg ◽  
Rebecca Spirig ◽  
...  
Keyword(s):  
Surgical Treatment ◽  
Treatment Options ◽  
Intraepithelial Neoplasia ◽  
Patient Reported Outcome Measures ◽  
Evidence Base ◽  
Patient Reported Outcome ◽  
Self Report ◽  
Vulvar Intraepithelial Neoplasia ◽  
Research Project ◽  
Patient Reported

This article discusses concerns about women with vulvar neoplasia (vulvar intraepithelial neoplasia and vulvar cancer) and the available surgical treatment options. Given the gaps in the evidence base in terms of women with vulvar neoplasia and surgical treatment the women with vulvar Neoplasia-Patient Reported Outcome (WOMAN-PRO) research project focused on complications, symptoms and associated distress of women with surgically treated vulvar neoplasia. The main results of the research project are summarised, showing complications identified by clinicians, experiences reported by patients, the newly developed WOMAN-PRO instrument and symptom occurrence of each of 31 symptoms and the degree to which symptoms distressed women during the first seven days after discharge following surgical treatment for their vulvar neoplasia. Furthermore, based on the major findings of the project, suggestions for further research and clinical practice and conclusions are presented. We conclude that including patient self-report as a major element in follow-up care has the potential to enhance the quality of supportive care.

Patient-Reported Outcome Measures in Aphasia

2012 ◽  
Vol 22 (4) ◽  
pp. 160-166 ◽  
Author(s):  
Billy Irwin
Keyword(s):  
Patient Reported Outcomes ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Self Report ◽  
Future Application ◽  
Social Approach ◽  
The Social ◽  
Patient Reported ◽  
Primary Focus ◽  
Subjective Reports

Patient-reported outcomes (PROs) for persons with aphasia offer a new method of obtaining subjective reports of social and psychological wellbeing subsequent to stroke and/or aphasia. Several instruments designed to elicit self-report in stroke patients, including those who have aphasia, have adopted aphasia-friendly formats and have included persons with all levels of severity in the development of the instrument. A brief overview of currently available tools is provided with comments regarding the primary focus of the tools and some of the reported psychometric properties. In addition, this article includes a discussion of the rationale and forces that are driving the development and use of these tools, including systematic health-care changes and an increased prominence of the social approach to aphasia. Also, the author discusses an overview of the current and future application of PROs.

scholarly journals The effect of numbness on outcome from total knee replacement

2017 ◽  
Vol 99 (5) ◽  
pp. 385-389 ◽  
Author(s):  
J Blackburn ◽  
V Wylde ◽  
R Greenwood ◽  
AW Blom ◽  
A Levy
Keyword(s):  
Total Knee Replacement ◽  
Knee Replacement ◽  
Functional Limitations ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Self Report ◽  
Pain Subscale ◽  
Patient Reported ◽  
Total Knee ◽  
The Impact

INTRODUCTION Some patients report continuing pain and functional limitations after total knee replacement (TKR). While numbness around the TKR scar is common, the impact of numbness is less clear. One particular activity that could be influenced by numbness is kneeling. The aim of this study was to explore the impact of numbness around TKR scars on health related quality of life and kneeling ability. METHODS Fifty-six patients were recruited one year after primary TKR. Sensation around the knee was assessed through patient self-reporting, monofilament testing and vibration, and patients’ distress was measured on a visual analogue scale. Patient reported outcome measures (PROMs) including the Western Ontario and McMaster Universities (WOMAC®) index, the Knee injury and Osteoarthritis Outcome Score (KOOS), the painDETECT® (Pfizer, Berlin, Germany) questionnaire and the EQ-5D™ (EuroQol, Rotterdam, Netherlands) questionnaire were used. Participants were also asked about kneeling ability. RESULTS While 68% of patients reported numbness around their TKR scar, there was no statistically significant correlation between numbness and distress at numbness (self-report: 0.23, p=0.08; monofilament: 0.15, p=0.27). Furthermore, numbness did not correlate significantly with joint specific PROMs (WOMAC®: 0.21, p=0.13; KOOS: 0.18, p=0.19). However, difficulty with kneeling did correlate with both self-reported numbness (0.36, p=0.020) and worse PROM scores (WOMAC® pain subscale: 0.62, p<0.001; KOOS: 0.64, p<0.001). CONCLUSIONS Numbness after knee replacement is common but is not associated with worse patient reported outcomes.

Functional Outcomes of Infected Hip Arthroplasty: A Comparison of Different Surgical Treatment Options

2016 ◽  
Vol 27 (3) ◽  
pp. 245-250 ◽  
Author(s):  
Benjamin V. Herman ◽  
Mark Nyland ◽  
Lyndsay Somerville ◽  
Steven J. MacDonald ◽  
Brent A. Lanting ◽  
...  
Keyword(s):  
Success Rate ◽  
Hip Arthroplasty ◽  
Short Form ◽  
Joint Infection ◽  
Treatment Options ◽  
Treatment Algorithm ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Comorbidity Index

Background Periprosthetic joint infection (PJI) following total hip arthroplasty (THA) can be treated with irrigation and debridement with head and polyethylene exchange (IDHPE) or 2-stage revision (2SR). Few studies have compared patient-reported outcome measures (PROMs) in patients managed with these treatments. Methods A retrospective review identified 137 patients who had an infected primary THA between 1986-2013. Control cohorts were matched according to age and Charlton Comorbidity Index (CCI). Harris Hip Scores (HHS), Short Form 12 (SF12), and Western Ontario and McMaster Universities Arthritis Index (WOMAC) scores were compared between the control and infected cohorts. Results 68 patients underwent a 2SR and 69 patients underwent an IDHPE. IDHPE had a 59% success rate in eradicating infection. PROMs for the 2SR cohort were significantly worse than the noninfected controls (SF12-PCS [34.0 vs. 38.3, p = 0.03]; HHS [76.6 vs. 91.7, p<0.001]; and WOMAC [67.3 vs. 79.3, p = 0.005]). There were no significant differences between the noninfected cohort and the successful IDHPE. Significant differences were found between failed IDHPE and noninfected controls (SF12-PCS [42.5 vs. 34.0, p = 0.011]; HHS [92.3 vs. 79.6, p = 0.004]). There was only difference in SF12-MCS scores (50.3 vs. 57.3, p = 0.012) between the 2SR and failed IDHPE cohorts. Conclusions Patients treated with a successful IDHPE had similar outcomes to noninfected patients. Patients that failed IDHPE and went onto 2SR had similar outcomes to those that had a 2SR alone. IDHPE demonstrated a 59% success rate with PROMs equivalent to a noninfected cohort and should be considered in the treatment algorithm of infected THA.

scholarly journals POS0063-PARE IMPLEMENTING SHARED DECISION MAKING TO ADVANCE PATIENT CENTRED RHEUMATOID ARTHRITIS CARE: A ROLE FOR A PATIENT ORGANISATION

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 238.1-238
Author(s):  
P. Pennings Msc ◽  
H. Voogdt-Pruis ◽  
B. Maat ◽  
T. Foekens ◽  
L. J. Kranenburg - van Koppen ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Treatment Options ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Medical Centre ◽  
Shared Decision ◽  
Patient Reported ◽  
Hospital Teams ◽  
Implementation Programme

Background:In rheumatoid arthritis (RA) care, patients and professionals face treatment decisions regularly due to the high number of treatment options, the chronic character of the disease and challenges around multi-morbidity. Recent studies have underlined the added value of shared decision making (SDM) between patients and professionals in RA care for health outcomes (i.e. disease activity, pain and joint damage) 1-4. Therefore, effort is needed to facilitate the implementation of SDM in daily clinical practice in order to advance patient centred RA care.Objectives:The aim of this implementation project was to improve SDM about treatment options for patients with RA. In addition the use of (Patient Reported) Outcome Measures in the process of SDM was taken into account.Methods:An implementation programme was developed by the National Association ReumaZorg Nederland (RZN) in co-creation with patientpartners and RMD professionals. Three hospital departments of rheumatology in the Netherlands participated in the project between January 2020 and March 2021. The implementation of SDM was supported by a project team of RZN.Results:The implementation programme started with the recording of RMD consultations in three participating departments of rheumatology. The consultations were then evaluated on the process of SDM (OPTION5) and discussed during the training of professionals that followed. Three observed improvements in SDM in RA care were: a. A more explicit introduction of choice for a patient is needed during the consultation; b. Tasks within the process of SDM should be allocated clearly among RMS specialists and nurses working together, in order to avoid unnecessary repetition of the same - or even inconsistent information; c. Besides the use of (patient reported) outcome measures in the SDM process, it is also important to include patients’ values (what matters to them?) when deciding on the best fitting treatment option. After the training, implementation support for SDM was given and aids to support the SDM process (i.e. redesign of health care processes, task allocation, hand card with explanation of the 4 steps of SDM) were developed. The implementation programme was tailored to the needs and stage of change for each hospital. Implementation materials for the hospital teams were developed in co-creation with patientpartners and the professionals. At the end of the project, a second set of consultations was recorded and evaluated on SDM. The hospital teams concluded that a continuous improvement cycle is needed to further enhance SDM.Conclusion:A continuous implementation programme on shared decision making could stimulate the enhancement of patient centred care in daily practice. Patient organisations could take a significant role in such a programme.References:[1]Pablos JL et al. Patient. 2020 Feb;13(1):57-69.[2]Fautrel B et al. Rheumatol Int. 2018 Jun;38(6):935-947. doi: 10.1007/s00296-018-4005-5.[3]Mathijssen EGE et al. RMD Open. 2020 Jan;6(1):e001121. doi: 10.1136/rmdopen-2019-001121.[4]Nota, I. 2017. Shared Decision-Making in rheumatology: What matters to patients? Thesis, University of Twente.Acknowledgements:This project of the National Association ReumaZorg Nederland (RZN) was made possible thanks to the effort of the following patientpartners, RMD specialists and researchers within the field of RMDs:Helene R Voogdt-Pruis, (AP PhD, RZN projectmanager Shared Decision Making within RMD care), Bertha Maat (RZN patient research partner), Theo Foekens (RZN patient research partner), Laura Kranenburg-van Koppen (MD, Msc, rheumatologist Erasmus and IJsselland Medical Centre), Annelieke Pasma (PhD, researcher Erasmus Medical Centre), Jos Hoes (MD PhD, rheumatologist Bravis Medical Centre), Inge Schoonen-Nuijten (RMD nurse, Bravis Medical Centre), Marijke van den Dikkenberg, (MSc, researcher Maasstad Medical Centre), Natalja Basoski (MD MSc, rheumatologist Maasstad Medical Centre), Angelique Weel-Koenders (Prof. Dr., rheumatologist Maasstad Medical Centre, Erasmus University), Gerardine Willemsen- de Mey (MSc, Chair of RZN).Disclosure of Interests:None declared.

scholarly journals Central Aspects of Pain in Rheumatoid Arthritis (CAP-RA): protocol for a prospective observational study

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Onosi S. Ifesemen ◽  
Daniel F. McWilliams ◽  
Eamonn Ferguson ◽  
Richard Wakefield ◽  
Kehinde Akin-Akinyosoye ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Outcome Measures ◽  
Central Sensitization ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Text Messages ◽  
Self Report ◽  
Pain Mechanisms ◽  
Link Type ◽  
Patient Reported

Abstract Background Pain and fatigue are persistent problems in people with rheumatoid arthritis. Central sensitisation (CS) may contribute to pain and fatigue, even when treatment has controlled inflammatory disease. This study aims to validate a self-report 8-item questionnaire, the Central Aspects of Pain in Rheumatoid Arthritis (CAP-RA) questionnaire, developed to measure central pain mechanisms in RA, and to predict patient outcomes and response to treatment. A secondary objective is to explore mechanisms linking CS, pain and fatigue in people with RA. Methods/design This is a prospective observational cohort study recruiting 250 adults with active RA in secondary care. The CAP-RA questionnaire, demographic data, medical history, and patient reported outcome measures (PROMs) of traits associated with central sensitization will be collected using validated questionnaires. Quantitative sensory testing modalities of pressure pain detection thresholds, temporal summation and conditioned pain modulation will be indices of central sensitization, and blood markers, swollen joints and ultrasound scans will be indices of inflammation. Primary data collection will be at baseline and 12 weeks. The test-retest reliability of CAP-RA questionnaire will be determined 1 week after the baseline visit. Pain and fatigue data will be collected weekly via text messages for 12 weeks. CAP-RA psychometric properties, and predictive validity for outcomes at 3 months will be evaluated. Discussion This study will validate a simple self-report questionnaire against psychophysical indices of central sensitization and patient reported outcome measures of traits associated with CS in a population of individuals with active RA. The application of this instrument in the clinical environment could provide a mechanism-based stratification tool to facilitate the provision of targeted therapy to individuals with pain and fatigue in RA, alongside treatments that target joint inflammation. Trial registration Clinicaltrials.gov NCT04515589. Date of registration 17 August 2020.

A systematic review of the evidence base for vidian neurectomy in managing rhinitis

2016 ◽  
Vol 130 (S4) ◽  
pp. S7-S28 ◽  
Author(s):  
T Marshak ◽  
W K Yun ◽  
C Hazout ◽  
R Sacks ◽  
R J Harvey
Keyword(s):  
Systematic Review ◽  
Outcome Measures ◽  
Original Data ◽  
Patient Reported Outcome Measures ◽  
Evidence Base ◽  
Patient Reported Outcome ◽  
Study Patient ◽  
Secondary Outcome ◽  
Vidian Neurectomy ◽  
Patient Reported

AbstractBackground:Vidian neurectomy has been proposed as a surgical option for rhinitis refractory to medical treatment. However, the evidence base for its benefit remains controversial.Methods:A systematic review was performed. Studies reporting original data on patients with rhinitis treated by vidian neurectomy were included. Patient-reported outcome measures were the primary outcome investigated; specific peri-operative morbidities were the secondary outcome.Results:A total of 1012 articles fulfilled the search criteria, 32 of which were included in the study. Patient-reported outcome measures were compared before and after surgery in eight studies. There were 529 patients represented in these trials. Significant improvement in rhinorrhoea was reported in all eight studies. Temporary dry eyes was reported in 24.63 per cent of cases (272 out of 1104 cases). There was no report of cranial nerve deficit or eye movement disturbance.Conclusion:Endoscopic vidian neurectomy does have a role in the surgical management of refractory rhinitis, particularly in patients with non-allergic rhinitis, but a well-designed cohort trial would be advantageous to clarify long-term outcomes.

scholarly journals Assessment of patient-reported outcome measures in the surgical treatment of patients with gastric cancer

2015 ◽  
Vol 30 (5) ◽  
pp. 1920-1929 ◽  
Author(s):  
Jennifer Straatman ◽  
Nicole van der Wielen ◽  
Pieter J. Joosten ◽  
Caroline B. Terwee ◽  
Miguel A. Cuesta ◽  
...  
Keyword(s):  
Gastric Cancer ◽  
Surgical Treatment ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported

scholarly journals Patient-reported outcome measures in pediatric palliative care—a protocol for a scoping review

2021 ◽  
Vol 10 (1) ◽  
Author(s):  
Heidi Holmen ◽  
Anette Winger ◽  
Simen A. Steindal ◽  
Charlotte Castor ◽  
Lisbeth Gravdal Kvarme ◽  
...  
Keyword(s):  
Palliative Care ◽  
Outcome Measures ◽  
Scoping Review ◽  
Rapid Development ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Self Report ◽  
Pediatric Palliative Care ◽  
Scoping Reviews ◽  
Patient Reported

Abstract Background In pediatric palliative care (PPC), there is a need to involve the child’s voice in situations regarding their symptoms and care needs. Patient-reported outcome measures (PROMs) can be tools to systematically gather data reported from the child or a proxy if the child is not capable to self-report in order to provide the services they need. There has been a rapid development in PROM research the last decade, and there is a need for an overview of current knowledge and experiences in the field. Thus, we aim to explore and summarize what is known from the published research about PROMs in PPC. Methods We propose a scoping review following the framework by Arksey and O’Malley and the PRISMA Extension for Scoping Reviews checklist. A systematic search will be performed in the following databases: Medical Literature Analysis and Retrieval System Online (Medline), Excerpta Medica database (EMBASE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), American Psychological Association (APA) PsycInfo, Health and Psychosocial Instruments (HaPI), and Allied and Complementary Medicine Database (AMED). The search will be followed by snowballing to identify key papers and significant researchers for additional citations. Covidence will facilitate the independent review of eligible citations, and data will be extracted and presented descriptively, and thematically analyzed using NVivo. Discussion The scoping review suggested in this protocol will identify PROMs which have been proposed in PPC and clarify the experiences with their use. The findings of this review will be relevant for researchers and healthcare personnel caring for children and adolescents in PPC. In addition, by highlighting knowledge gaps about the use of PROMs in PPC, this review will point out future needs within this field of research, which is crucial for improving quality of care in PPC. Systematic review registration https://osf.io/yfch2/.

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