Linguistic Relevance and Applicability of the Spanish VHI-10 in a Population Outside Spain

2021 ◽  
Author(s):  
M. Eugenia Castro ◽  
Lauren Timmons Sund ◽  
Neel K. Bhatt ◽  
Edie R. Hapner
Keyword(s):  
Cultural Differences ◽  
Demographic Data ◽  
Background Level ◽  
Structured Interview ◽  
Patient Reported Outcome ◽  
Spanish Speakers ◽  
Structured Interviews ◽  
Patient Reported ◽  
Translation Methods ◽  
Future Work

Introduction: The Voice Handicap Index 10 (VHI-10) has been translated to many languages. There are substantial differences between the translation methods. Translated questionnaires without appropriate linguistic validation may not capture cultural differences or be understood by the participants in the manner intended by the original developers. This also holds true between dialects within a language. There are two versions of the VHI-10 in Spanish, both translated in Spain. Considering the cultural and dialectical differences amongst Spanish speakers, it is hypothesized that these translations may not be applicable globally. The purpose of this study was to determine the linguistic relevance and applicability of the currently available versions of the VHI-10 in Spanish amongst Spanish speakers outside of Spain. Methods: This study used mixed methods qualitative and quantitative procedures consisting of semi-structured interviews and quantitative analysis of data. Sixty-nine participants met the inclusion criteria. Participants with and without a diagnosis of dysphonia were included. Demographic data collected included age, gender, cultural/dialectical background, level of education, and number of years residing in Southern California. Participants were provided the currently available translated versions of the VHI-10 in Spanish (V1 and V2). After reading both questionnaires, a semi-structured interview was conducted by a bilingual SLP. Semi-structured interview responses were coded to determine patterns of words marked as problematic/not understood or non-representative of the Spanish dialect spoken by the participants. Results: The majority of participants marked at least one word in both versions as problematic/not understood or non-representative of the Spanish dialect spoken (60/69, 87.0% for V1 and 63/69, 92.3%, for V2). The two words most frequently marked as problematic/not understood or non-representative of the Spanish dialect spoken were “hándicap” (marked by 51/69 participants, 73.9%) and “minusvalía” (marked by 52/69 participants, 75.4%). Conclusions: Data analysis demonstrates that the majority of participants marked words as not understood/non-representative of their dialect on either V1 or V2. One question not understood or not answered could have an impact on how we interpret this PRO measure in clinical practice. Use of currently available Spanish translations of the VHI-10 may yield unreliable results when used amongst Spanish speakers outside Spain due to dialectal and cultural differences. Future work will include validation of a voice patient-reported outcome (PRO) measure that is culturally and linguistically appropriate for Spanish speakers outside Spain.

scholarly journals Check-in Phone Calls Six Weeks and Six Months After Musculoskeletal Specialty Care

2021 ◽  
Vol 8 ◽  
pp. 237437352110387
Author(s):  
Amelia E Mercado ◽  
Amanda Gonzalez ◽  
David Ring ◽  
Karl Koenig ◽  
Tom J Crijns
Keyword(s):  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Specialty Care ◽  
Spanish Speakers ◽  
Medical Assistants ◽  
Symptoms Of Depression ◽  
Phone Calls ◽  
Patient Reported ◽  
Alternative Measures ◽  
Future Work

Health organizations want to measure patient-reported outcome measures (PROMs) longitudinally. Two medical assistants called people selectively at 6 weeks and routinely at 6 months to obtain PROMs as part of routine musculoskeletal specialty care. Only 47% of patients (123 of 263) were reached by phone at 6 weeks and 41% (246 of 594) at 6 months. Spanish speakers were more likely to answer. Eighty-nine percent of people reached at 6 weeks and 76% reached at 6 months were willing to complete PROMs. Speaking Spanish, older age, and fewer symptoms of depression were associated with completing PROMs when reached by phone at 6 weeks. Women and Spanish-speaking patients were more likely to participate at 6 months. The observation that most people do not participate in longitudinal PROM measurement in a system that devotes notable resources in the setting of musculoskeletal specialty care—with some variation by psychosocial factors—suggests that longitudinal PROM measurement may be infeasible. Future work can explore alternative measures of the value of care that account for the large percentage of people that deprioritize care after a single specialty visit.

scholarly journals Development of a patient-reported outcome measure in limb reconstruction

2021 ◽  
Vol 2 (9) ◽  
pp. 705-709
Author(s):  
Jonathan Wright ◽  
Anna Timms ◽  
Sharon Fugazzotto ◽  
David Goodier ◽  
Peter Calder
Keyword(s):  
Patient Group ◽  
Patient Reported Outcomes ◽  
Structured Interview ◽  
Patient Reported Outcome ◽  
Face Validity ◽  
Structured Interviews ◽  
Single Measure ◽  
Limb Reconstruction ◽  
Reconstruction Surgery ◽  
Patient Reported

Aims Patients undergoing limb reconstruction surgery often face a challenging and lengthy process to complete their treatment journey. The majority of existing outcome measures do not adequately capture the patient-reported outcomes relevant to this patient group in a single measure. Following a previous systematic review, the Stanmore Limb Reconstruction Score (SLRS) was designed with the intent to address this need for an effective instrument to measure patient-reported outcomes in limb reconstruction patients. We aim to assess the face validity of this score in a pilot study. Methods The SLRS was designed following structured interviews with several groups including patients who have undergone limb reconstruction surgery, limb reconstruction surgeons, specialist nurses, and physiotherapists. This has subsequently undergone further adjustment for language and clarity. The score was then trialled on ten patients who had undergone limb reconstruction surgery, with subsequent structured questioning to understand the perceived suitability of the score. Results Ten patients completed the score and the subsequent structured interview. Considering the tool as a whole, 100% of respondents felt the score to be comprehensible, relevant, and comprehensive regarding the areas that were important to a patient undergoing limb reconstruction surgery. For individual questions, on a five-point Likert scale, importance/relevance was reported as a mean of 4.78 (4.3 to 5.0), with ability to understand rated as 4.92 (4.7 to 5.0) suggesting high levels of relevance and comprehension. Flesch-Kincaid reading grade level was calculated as 5.2 (10 to 11 years old). Conclusion The current SLRS has been shown to have acceptable scores from a patient sample regarding relevance, comprehensibility, and comprehensiveness. This suggests face validity, however further testing required and is ongoing in a larger cohort of patients to determine the reliability, responsiveness, precision, and criterion validity of the score in this patient group. Cite this article: Bone Jt Open 2021;2(9):705–709.

Optimizing electronic capture of patient-reported outcome measures in oncology clinical trials: lessons learned from a qualitative study

2020 ◽  
Vol 9 (17) ◽  
pp. 1195-1204
Author(s):  
Florence D Mowlem ◽  
Brad Sanderson ◽  
Jill V Platko ◽  
Bill Byrom
Keyword(s):  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Lessons Learned ◽  
Structured Interviews ◽  
Patient Reported ◽  
Oncology Clinical Trials ◽  
Anticancer Treatment ◽  
Fit For Purpose ◽  
The Impact ◽  
Electronic Implementation

Aim: To understand the impact of anticancer treatment on oncology patients’ ability to use electronic solutions for completing patient-reported outcomes (ePRO). Materials & methods: Semi-structured interviews were conducted with seven individuals who had experienced a cancer diagnosis and treatment. Results: Participants reported that the following would impact the ability to interact with an ePRO solution: peripheral neuropathy of the hands (4/7), fatigue and/or concentration and memory issues (6/7), where they are in a treatment cycle (5/7). Approaches to improve usability included: larger, well-spaced buttons to deal with finger numbness, the ability to pause a survey and complete at a later point and presenting the recall period with every question to reduce reliance on memory. Conclusion: Symptoms associated with cancers and anticancer treatments can impact the use of technologies. The recommendations for optimizing the electronic implementation of patient-reported outcome instruments in this population provides the potential to improve data quality in oncology trials and places patient needs at the forefront to ensure ‘fit-for-purpose’ solutions.

scholarly journals Post-stroke fatigue: an exploratory study with patients and health professionals to develop a patient-reported outcome measure

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Ingrid Johansen Skogestad ◽  
Marit Kirkevold ◽  
Petra Larsson ◽  
Christine Råheim Borge ◽  
Bent Indredavik ◽  
...  
Keyword(s):  
Future Development ◽  
Health Professionals ◽  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Stroke Survivors ◽  
Structured Interviews ◽  
Post Stroke ◽  
Patient Reported Outcome Measure ◽  
Patient Reported ◽  
Initial Hospital

Abstract Background Post-stroke fatigue (PSF) is commonly reported and described as disabling by patients recovering from stroke. However, a major challenge is how to accurately diagnose and assess PSF. Therefore, the aim of this study was to explore PSF as it is experienced by stroke survivors and described by health professionals to guide future development of a PSF-specific PROM. Methods Individual semi-structured interviews were conducted with stroke survivors experiencing PSF (n = 9) and three focus groups were conducted with health professionals (n = 16). Data were analyzed through inductive content analysis. Results The analysis revealed four themes illustrating the experience and descriptions of PSF: 1) PSF characteristics, 2) interfering and aggravating factors, 3) management, and 4) PSF awareness, which refers to stroke survivors first becoming aware of PSF after their initial hospital admission. Conclusion This study highlights the complexity and multidimensionality of PSF. The results from this study will guide future development of a PSF-PROM and support its content validity.

scholarly journals What is the optimal outcome after endoscopic sinus surgery in the treatment of chronic rhinosinusitis? A consultation of Canadian experts

2021 ◽  
Vol 50 (1) ◽  
Author(s):  
Nadim Saydy ◽  
Sami P. Moubayed ◽  
Marie Bussières ◽  
Arif Janjua ◽  
Shaun Kilty ◽  
...  
Keyword(s):  
Chronic Rhinosinusitis ◽  
Endoscopic Sinus Surgery ◽  
Patient Reported Outcome ◽  
Sinus Surgery ◽  
Structured Interviews ◽  
Subjective Data ◽  
Operative Outcomes ◽  
Patient Reported ◽  
Definition Of Success ◽  
Reported Data

Abstract Objectives Many experts feel that in the absence of well-defined goals for success, they have an easier time identifying failure. As success ought to not be defined only by absence of failure, we aimed to define optimal outcomes for endoscopic sinus surgery (ESS) in chronic rhinosinusitis (CRS) by obtaining expert surgeon perspectives. Methods A total of 12 surgeons participated in this targeted consultation. Face to face semi-structured interviews were performed with expert surgeons in the field of CRS and ESS. General impressions and personal definitions of acceptable operative success and optimal operative outcomes were compiled and summarized. Results According to an expert survey, patients’ main objectives are an improvement in their chief complain, a general improvement in quality of life (QoL), and a better overall symptomatic control. The most important aspects of endoscopy for defining a successful intervention were an adequate mucus circulation, a healthy mucosa, minimal edema, and patency of all explored cavities or ostia. In the assessment of surgical outcomes, it was determined that both objective and patient reported data must be carefully examined, with more attention given to subjective outcomes. Conclusions According to data gathered from a Canadian expert consultation, a definition of success must be based on both subjective data and nasal endoscopy. We propose to define an acceptable outcome as either a subjective improvement of at least the minimal clinically improvement difference of a validated patient reported outcome questionnaire, along with a satisfactory endoscopic result (1) or a complete subjective resolution with a sub-optimal endoscopy (2). Graphical abstract

A Retrospective Comparison of American Women’s Spontaneous Conceptions and Gestational Surrogate Pregnancies

2021 ◽  
Author(s):  
Jennifer Lahl ◽  
Kallie Fell ◽  
Kate Bassett ◽  
Frances Broghammer ◽  
Maggie Eastman ◽  
...  
Keyword(s):  
Ethical Issues ◽  
Demographic Data ◽  
Health Issues ◽  
Structured Interviews ◽  
Survey Tool ◽  
Level Data ◽  
Retrospective Comparison ◽  
Caucasian Women ◽  
Future Work

Abstract Purpose: To evaluate the retrospective pregnancy experiences of American women by comparing spontaneous pregnancies with gestational surrogate pregnancies. Methods: Data were collected via structured interviews following an approved survey tool utilizing an online video platform. In total, 97 interviews were conducted. Results: Demographic data was collected on age, ethnicity, primary language, country of birth, education, and income level. Data revealed that a woman was more likely to have a pregnancy that was high-risk during a surrogate pregnancy than a non-surrogate pregnancy, independent of maternal age or gravidity (OR 7.22, p<0.001). A surrogate pregnancy had 4 times higher odds of resulting in a c-section (p<0.001) as well as delivering at an earlier gestational age (p<0.001). Further, women were more likely to experience adverse effects, including postpartum depression, following delivery of a surrogate child than their own biological child (p<0.001). Finally, the rate of new post-surrogacy chronic health issues for non-Caucasian women was significantly higher than for Caucasians (p<0.001). Women reported using the payment they received for their surrogacy for basic needs. Almost half of the women reported using the money to pay bills or get out of debt.Conclusions: These results are among the first of their kind. This study reveals that surrogate health disparities exist and that there may be long-term complications after a surrogate pregnancy. This raises important social, economic, and ethical issues related to surrogacy which must be further explored. Future work will build on this study and help elucidate the circumstances and consequences surrounding this complex issue.

scholarly journals A Single Case Narrative of Spirituality Following Aphasia from Traumatic Brain Injury: Findings about Forgiveness and Freedom Using WELLHEAD and SHALOM

Religions ◽  
2019 ◽  
Vol 10 (5) ◽  
pp. 301 ◽  
Author(s):  
Katharyn Mumby
Keyword(s):  
Traumatic Brain Injury ◽  
Brain Injury ◽  
Single Case ◽  
Health Assessment ◽  
Case Series ◽  
Structured Interview ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Spiritual Health ◽  
Patient Reported

Rehabilitation has neglected the spirituality of people with aphasia, a neurogenic impairment of language for communication and thought processes. Aphasia reduces scope for adjustment processes where words are normal currency, such as forgiveness and reconciliation. A single case narrative was generated from a case series exploring the feasibility of spiritual health assessment in aphasia. The individual had traumatic brain injury, with the primary symptom of aphasia, giving the first detailed account of its kind. The WELLHEAD spirituality toolkit provided a structured interview approach, exploring spirituality in terms of ‘meaning and purpose’ within four dimensions, WIDE, LONG, HIGH and DEEP, incorporating patient-reported outcome measures and goal-setting, with feedback interviews. Spiritual Health and Life Orientation Measure (SHALOM) generated a comparator spiritual health assessment. The quantitative feedback measures and self-reported outcomes were complemented by detailed qualitative interview transcripts subject to systematic thematic analysis in NVivo. The findings were co-constructed and systematically verified. This non-religious narrative evidenced the accessibility, acceptability, and impact of the resources. Self-forgiveness was paramount for freedom to journey into the unknown beyond self with ‘Calm’, towards helping others and accepting help. Religion, Faith and Belief were reconceptualised. Forgiveness of self and others was integral and instrumental in recovery, offering avenues for further investigation and application.

Reproductive empowerment: The main motivator and outcome of carrier testing

2011 ◽  
Vol 17 (4) ◽  
pp. 567-578 ◽  
Author(s):  
Celine Lewis ◽  
Heather Skirton ◽  
Ray Jones
Keyword(s):  
Autosomal Recessive ◽  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Information Gathering ◽  
Carrier Testing ◽  
Structured Interviews ◽  
Reproductive Risk ◽  
Chromosome Translocations ◽  
Patient Reported Outcome Measure ◽  
Patient Reported

The aim of this Grounded Theory study was to assess the motivation and outcomes of carrier testing. Qualitative semi-structured interviews were conducted with participants who had undergone carrier testing for autosomal recessive, X-linked conditions and chromosome translocations. Reproductive empowerment emerged as the central phenomenon. A desire to manage risk was the main motivator for carrier testing, and information gathering the main facilitator. Participants were then able to make informed decisions, regain control over their reproductive risk and pass on information to family members. These findings support a patient-reported outcome measure of empowerment currently being developed for genetic services.

Back Pain and Its Effects on Early Patient-Reported Outcome Measures in Total Hip Arthroplasty

2020 ◽  
Vol 4 (04) ◽  
pp. 180-186
Author(s):  
Vivek Singh ◽  
Stephen Zak ◽  
David Yeroushalmi ◽  
Ran Schwarzkopf ◽  
Roy I. Davidovitch
Keyword(s):  
Back Pain ◽  
Total Hip Arthroplasty ◽  
Hip Arthroplasty ◽  
Smoking Status ◽  
Demographic Data ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Chi Square ◽  
Total Hip ◽  
Patient Reported

AbstractThe success of total hip arthroplasty (THA) may be negatively impacted in those with back pain as evidenced by patient-reported outcome (PRO) scores. The goal of this study was to determine whether the hip–spine relationship, as it relates to the presence of preoperative back pain, affected THA outcomes, and PRO scores. We retrospectively reviewed 243 patients who underwent primary THA and completed the Hip disability and Osteoarthritis Outcome Score Junior (HOOS Jr.), back pain questionnaire, and the Forgotten Joint Score-12 (FJS-12) preoperatively and at 12-weeks postoperatively. Patients were separated into two cohorts: those with preoperative back pain and those who were back pain free. Analysis was performed using t-test and chi-square to determine differences in demographic data. Regression analysis was utilized to account for differences in demographic data. There were significant demographic differences, which included body mass index, American Society of Anesthesiologists, smoking status, and length of stay between the two cohorts. Patients with preoperative back pain had lower preoperative HOOS Jr. scores than their counterparts (44.93 vs. 55.2; p = 0.029). Additionally, the preoperative back pain free group reported better FJS-12 and HOOS Jr. scores at 12-weeks postoperatively (FJS-12:62.00 vs. 43.32, p < 0.0001; HOOS Jr.: 81.33 vs. 75.68, p = 0.029). Patients with preoperative back pain had lower preoperative PRO scores and overall experienced less postoperative satisfaction and greater disability than patients who were back pain free. However, these patients' preoperative to postoperative improvement in PRO scores (delta change) was greater than that of the back pain free patients. These results suggest that THA may alter the hip-spine mechanics and potentially provide a reprieve from back pain.

Development of PRO-PMs assessing symptoms following completion of curative-intent chemotherapy.

2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 171-171
Author(s):  
Katherine Eresian Chenok ◽  
Feifei Ye ◽  
Kristen K. McNiff Landrum ◽  
Emma Hoo ◽  
Valerie Kong ◽  
...  
Keyword(s):  
Demographic Data ◽  
Reliability And Validity ◽  
Psychometric Testing ◽  
Target Population ◽  
Patient Reported Outcome ◽  
Quality Data ◽  
Patient Centered ◽  
Curative Intent ◽  
Lung Cancers ◽  
Patient Reported

171 Background: Few patient-reported outcome performance measures (PRO-PMs) have been validated for the cancer population. The testing that has occurred mostly focuses on advanced cancers despite the fact that the majority of people with cancer are diagnosed with earlier stage disease. We developed and tested PRO-PMs to assess quality of life, pain and fatigue in adult patients completing curative-intent chemotherapy for breast, colon and non-small cell lung cancers. Our goal is to develop measures that target symptoms that impact entry into the survivorship phase. Methods: We recruited 20 diverse test sites from the Michigan Oncology Quality Collaborative (MOQC) and the Alliance of Dedicated Cancer Centers (ADCC). Test sites enrolled patients, administered surveys, and collected clinical and demographic data. A Technical Expert Panel and the Patient and Caregiver Council selected PROMs and provided testing guidance. We assessed data collection feasibility and clinician/staff/patient burden throughout the testing process. Results: PROMIS instruments were selected due to psychometric testing in the target population, public availability and acceptability to patients and test sites. 1,753 patients were enrolled between 10/1/19 – 3/31/21. The COVID public health emergency disrupted testing and resulted in lower than expected enrolled patients/completed surveys; however, adaptations led to expansions in survey administration methods. Preliminary practice-level performance results from 10 sites show variation across sites for pain interference (mean = 50.5, SD = 2.8, with a range of 44.6—54.6) and fatigue (mean 49.2, SD = 2.8, with a range of 44.6--54.3). Some test sites reported PRO implementation to be burdensome; however, most patients evaluated did not find survey completion to be burdensome. Conclusions: Next steps include testing risk adjustment variables/model, creating adjusted performance scores, reliability and validity testing. Despite the consensus goal of PRO-PMs in oncology, barriers to implementation persist and important methodologic barriers exist (e.g., ability to achieve sufficient sample size in an oncology practice; defining the most appropriate numerator calculation that reports the desired quality concept and is appropriate for the PROM being used; analytic best practices for PRO-PM adjustment/testing). This project is contributing to the knowledge base as we seek to ensure that PRO-PMs provide meaningful, actionable, patient-centered quality data with benefits that outweigh the burden of implementation.

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