scholarly journals Advanced translation and cultural adaption of the LYMPH-Q Upper Extremity Module from English to Danish

2021 ◽  
Author(s):  
Christoffer Bing Madsen ◽  
Lotte Poulsen ◽  
Mads Gustaf Jørgensen ◽  
Mike Mikkelsen Lorenzen ◽  
Elena Tsangaris ◽  
...  
Keyword(s):  
Upper Extremity ◽  
World Health ◽  
Cognitive Debriefing ◽  
English Version ◽  
Response Options ◽  
Cultural Adaption ◽  
Danish Version ◽  
Patient Reported ◽  
Back Translation ◽  
The Impact

Abstract Background To better quantify the impact that breast cancer-related arm lymphedema (BCRL) has on health-related quality of life (HR-QOL), a disease-specific patient-reported outcome measure (PROM) is needed. The LYMPH-Q Upper Extremity Module was recently developed for patients with BCRL. The aim of this study was to perform an advanced translation and culturally adapt the LYMPH-Q Upper Extremity Module for use in Denmark. Methods The LYMPH-Q Upper Extremity Module was translated into Danish according to the guidelines of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) and the World Health Organization (WHO). The process included two forward and one back translation, an expert panel meeting, and cognitive debriefing interviews with patients. The focus of the translation was to develop a Danish version that used appropriate patient-friendly language while maintaining the meaning of the items, instructions and response options. Results The two forward translations resulted in minor differences in terminology. These discrepancies were discussed among the translators and a harmonized Danish version 1 was achieved. Comparison of the back translation to the original English version identified 14 items/instructions/response options that required re-translation. Subsequently, experts helped to identify and resolve the language for 10 items/instructions/response options that did not maintain the same meaning as the English version. Participants in the cognitive debriefing interviews did not report any difficulties with understanding the items/instructions/response options. Conclusions The translation and cultural adaption process led to the development of a conceptually equivalent Danish version of the LYMPH-Q Upper Extremity Module. Level of Evidence: Not gradable

scholarly journals Translation and cultural adaptation of the King’s Brief Interstitial Lung Disease health status questionnaire for use in Brazil

2019 ◽  
Vol 45 (5) ◽  
Author(s):  
Karoline Silveira ◽  
Leila John Marques Steidle ◽  
Darlan Laurício Matte ◽  
Pedro Heliodoro Tavares ◽  
Mariangela Pimentel Pincelli ◽  
...  
Keyword(s):  
Health Status ◽  
Interstitial Lung Disease ◽  
Lung Disease ◽  
English Language ◽  
Target Population ◽  
Cognitive Debriefing ◽  
Language Version ◽  
Back Translation ◽  
The Impact ◽  
Translation And Cultural Adaptation

ABSTRACT Objective: To translate the King’s Brief Interstitial Lung Disease (K-BILD) questionnaire to Portuguese and culturally adapt it for use in Brazil. The K-BILD quantifies the health status of patients with ILD. Methods: The process involved the following steps: authorization from the author of the original (English-language) questionnaire; translation of the questionnaire to Portuguese by three translators, working independently; merging of the translations by a committee of specialists; back-translation of the questionnaire to English; revision and readjustment of the back-translation by the committee of specialists; evaluation by the original author; revision of the back-translation; cognitive debriefing (verification of the clarity and acceptability of the Portuguese-language version in the target population-i.e., patients with ILD); and finalization of the Portuguese-language version. Results: In the cognitive debriefing step, 20 patients with ILD were interviewed. After the interviews, the clarity and acceptability index of each question was ≥ 0.8, which is considered acceptable. Conclusions: The Portuguese-language version of K-BILD appears to be easily administered to and understood by patients with ILD in Brazil. To our knowledge, this is the only instrument in Brazilian Portuguese that is designed to evaluate the impact that ILD has on the various aspects of the lives of those it affects.

scholarly journals Functional Assessment of Chronic Illness Therapy-Fatigue Scale (FACIT-Fatigue): Cognitive Debriefing in Patients with Chronic Lymphocytic Leukemia (CLL)

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 4777-4777
Author(s):  
Helena Chung ◽  
Daniel Eek ◽  
Calvin Krogh ◽  
Matthew Blowfield ◽  
Oren Meyers ◽  
...  
Keyword(s):  
General Population ◽  
Content Validity ◽  
Cognitive Debriefing ◽  
Employment Equity ◽  
Response Options ◽  
Concept Elicitation ◽  
The Past ◽  
Fit For Purpose ◽  
Equity Ownership ◽  
The Impact

Introduction: The FACIT-Fatigue is a 13-item patient-reported outcome instrument (PRO) that was designed to assess fatigue-related symptoms and impacts on daily functioning. This study assessed the content validity of the FACIT-Fatigue in patients with CLL to help determine if it is fit-for-purpose in this population. Methods: Forty adults with first-line (1L) or relapsed or refractory (R/R) CLL took part in an interview study comprising concept elicitation and cognitive debriefing. All participants had experienced CLL-related symptoms (fatigue, weight loss, fever or night sweats) in the past week. For concept elicitation, interviewers used a standardized semi-structured interview guide with open-ended and prompted questions to explore patients' experiences of the signs, symptoms and impacts of CLL and its treatments. Patients were asked to provide a disturbance rating of these concepts on a 0-10 scale of severity. All interviewed patients completed the FACIT-Fatigue. Item scores can range from 0 ("not at all") to 4 ("very much"), and the total score from 0 to 52; lower scores indicate greater fatigue. The recall period for each item is the past 7 days. The general population mean score is 43 (Cella et al. 2002; Montan et al. 2018). During cognitive debriefing, the clarity of the FACIT-Fatigue items, their relevance to the patients, and the comprehensiveness of the response options were assessed. Interviews were carried out by telephone and lasted about 60-75 minutes. De-identified audio-recorded interviews were transcribed, coded and analyzed using qualitative data analysis software. Results: Median age of participants was 58 years (range: 28-73 years), and gender distribution was equal. During concept elicitation, fatigue was identified as the most prominent and impactful concept. It was the only concept mentioned by 100% of patients, and almost all (1L: 95%; R/R: 85%) mentioned it spontaneously without prompting. Fatigue had a high mean disturbance rating (1L: 7.1; R/R: 6.9). Seven fatigue-related sub-components were identified from the way that patients described their fatigue, covering symptoms (tiredness/need for sleep, lack of energy, weakness, cognitive fatigue) and impacts (decreased ability to maintain social/familial/professional role, decreased physical functioning, frustration). Mean (standard deviation) FACIT-Fatigue score was 28.9 (13.6) for patients with 1L CLL and 29.3 (11.5) for those with R/R CLL, indicating greater fatigue than the general population and providing further evidence that fatigue is a core component of CLL. The items that scored highest were: "I feel fatigued" (item 1; mean score: 2.4) and "I feel tired" (item 4; mean score: 2.4). The items that scored lowest were: "I am too tired to eat" (item 10; mean score: 0.4) and "I need help doing my usual activities" (item 11; mean score: 1.0). During cognitive debriefing, 100% of patients confirmed that the FACIT-Fatigue was reflective of their experiences with fatigue resulting from CLL. All patients found the response options provided by the FACIT-Fatigue to be sufficient. Patients confirmed that most of the FACIT-Fatigue terminology was clear. An exception was the item "I feel listless/washed out" (item 3), which was not consistently understood: most patients linked it to an absence of both physical and mental energy, but some interpreted it just as a lack of physical energy. Overall, patients considered the FACIT-Fatigue items to be relevant and distinct from each other, and found that the impact items captured both the mental and physical impacts of fatigue. One item, "I am too tired to eat", was not considered to be highly pertinent because, although respondents could imagine that some patients with CLL might be too tired to eat, they themselves could only recall being too tired to prepare a meal, not being too tired to eat. However, respondents felt that the item was still relevant and that it did not detract from the applicability or clarity of the FACIT-Fatigue. Conceptual relevance of the FACIT-Fatigue was supported by mapping of its items to the 7 fatigue-related sub-components identified during concept elicitation (Table). Conclusions: Results from concept elicitation and cognitive debriefing interviews demonstrated content validity of the FACIT-Fatigue in patients with CLL with 1L or R/R disease, thus providing evidence that it is fit-for-purpose in this population. Disclosures Chung: AstraZeneca: Employment, Equity Ownership. Eek:AstraZeneca: Employment, Equity Ownership. Eyre:Janssen: Honoraria; Gilead: Consultancy, Honoraria, Other: commercial research support; Abbvie: Honoraria; Roche: Honoraria.

scholarly journals Development of a novel patient-reported measure for acromegaly: the Acro-TSQ

Pituitary ◽  
2019 ◽  
Vol 22 (6) ◽  
pp. 581-593 ◽  
Author(s):  
Maria Fleseriu ◽  
Leon Fogelfeld ◽  
Murray B. Gordon ◽  
Jill Sisco ◽  
Hilary H. Colwell ◽  
...  
Keyword(s):  
Side Effects ◽  
Disease Burden ◽  
Symptom Control ◽  
Somatostatin Analogs ◽  
Well Being ◽  
The United States ◽  
Daily Activities ◽  
Response Options ◽  
Patient Reported ◽  
The Impact

Abstract Purpose Somatostatin analogs (SSAs) represent a mainstay of medical treatment for acromegaly, currently available as either intramuscular or deep subcutaneous injections. Patient-reported outcomes (PROs) are increasingly common as relevant outcomes in studies of acromegaly and its treatment, but there are no validated PRO measures available that focus on the disease burden and the impact of treatment, specifically designed for use in patients with acromegaly. We sought to develop a new and unique PRO measure, the Acromegaly Treatment Satisfaction Questionnaire (Acro-TSQ). Methods Concept elicitation (CE) interviews were conducted with acromegaly patients in the United States receiving SSA injections at a stable dose for ≥ 6 months. A questionnaire was drafted based on these interviews; combined CE and cognitive debriefing (CE/CD) interviews were then conducted to confirm the content, clarity, and relevance of the questionnaire. Results Nineteen subjects completed interviews [n = 9 CE, n = 10 CE/CD; n = 15 Lanreotide Depot/Autogel (Somatuline), n = 4 Octreotide LAR (Sandostatin LAR)]. Most subjects responded positively when asked about the effectiveness of their current treatment; however, breakthrough symptoms, injection site reactions, and side effects were commonly reported and had negative impacts on social and emotional well-being and daily activities. All 10 subjects involved in debriefing interviews found the questionnaire to be relevant, easy to complete, and found the response options to be clear. The resulting 26-item Acro-TSQ covers symptoms and symptom control, gastrointestinal side effects and their impact on daily activities, the emotional impact of treatment, convenience and ease of use, and overall satisfaction. Conclusions The Acro-TSQ is a novel PRO, focused on both disease burden and impact of treatment; it was found to be comprehensive, clear, and relevant for patients with acromegaly receiving injectable SSA treatment.

scholarly journals Exploring the impact of Patient Reported Outcome Measures (PROMs) among orthopaedic surgeons in mainland China: systematic review and survey-based study on hip and knee instruments

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
James Reeves Mbori Ngwayi ◽  
Jie Tan ◽  
Ning Liang ◽  
Kenedy Uzoma Obie ◽  
Daniel Edward Porter
Keyword(s):  
Outcome Measures ◽  
Mainland China ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Response Options ◽  
Orthopaedic Surgeons ◽  
Clinical Registries ◽  
Online Social Media ◽  
Patient Reported ◽  
The Impact

Abstract Background Patient Reported Outcome Measures (PROMs) are widely used in Europe and North America in a variety of areas including research, clinical governance, clinical registries and insurance ascertainment. The aim of this study was to assess commonly used knee and hip PROMs among Chinese surgeons and to gain an insight into their impact on evaluation of clinical outcomes. Methods 1. A systematic literature search of databases Medline, EMBASE, CINAHL and CNKI was performed from the earliest records to 22/07/2020 for knee instruments and 22/08/2020 for hip instruments, to retrieve Chinese Mandarin cross culturally adapted and validated knee and hip PROMs. 2. An 11-item electronic questionnaire was then designed under four domain categories. The survey was distributed via a ubiquitous online social media platform to orthopaedic surgeons. Responses were collected and analyzed. Output from 1. was used to populate parts of the survey questionnaire. Results The systematic online search yielded a total of 41 evaluation instruments, (10 hip and 31 knee); all of which were incorporated as response options. 234 viable questionnaires were retrieved with the largest group representing attending surgeons. 59.0% were familiar with the concept of PROMs among which 78.4% reported to have used PROMs themselves. In order of frequency of use, PROMs were purposed for clinical assessment (55.6%), research (40.7%), health regulation policies (18.6%) and insurance service requirements (10.6%). Implementation was prompted by both departmental (43.4%) and institutional policy (34.5%). 89.4% of PROMs users reported difficulties in the use of PROMs, with major barriers including license fees, limited access, inadequate training and burden of fill-out time (all > 40%). Conclusion There is evidence of limited familiarity with knee and hip PROMs among orthopaedic surgeons. Barriers to their use are significant. Development of a Chinese language PROMs database would be helpful.

scholarly journals Impact of Inotersen on Functioning and Activities of Daily Living for Patients with Hereditary TTR Amyloidosis: Results from a Double-Blind Placebo-Controlled Trial

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 4812-4812 ◽  
Author(s):  
Aaron Yarlas ◽  
Giampaolo Merlini ◽  
Michelle K White ◽  
Asia Sikora Kessler ◽  
Andrew Lovley ◽  
...  
Keyword(s):  
Activities Of Daily Living ◽  
Daily Living ◽  
Research Funding ◽  
Controlled Trial ◽  
Daily Activities ◽  
Investigational Drug ◽  
Double Blind ◽  
Response Options ◽  
Patient Reported ◽  
The Impact

Abstract Background: Hereditary transthyretin amyloidosis (hATTR) is a rare, systemic, progressive, and fatal condition in which misfolded proteins, mainly produced in the liver, deposit in muscle and organ tissues leading to symptoms of peripheral neuropathy, and possible cardiomyopathy and autonomic neuropathy. The Norfolk Quality of Life (QOL)-Diabetic Neuropathy (DN) Questionnaire is a patient-reported measure that has been validated for capturing neuropathic-specific QOL in patients with hATTR amyloidosis. Examination of patients' responses to the items of the Norfolk-QOL-DN can provide important insights into the impact of hATTR amyloidosis, and its treatment, on concrete aspects of patients' daily activities and physical functioning. Objective: To provide a descriptive analysis of item-level responses to the Norfolk-QOL-DN by patients with hATTR amyloidosis with polyneuropathy, who participated in the NEURO-TTR trial, in order to identify the impact of treatment with inotersen versus placebo on concrete aspects of patients' functioning and daily activities. Methods: Data come from the NEURO-TTR trial, a multicenter, multinational, double-blind trial (NCT01737398) of 172 adults with hATTR amyloidosis with polyneuropathy who received 65 weeks of either treatment with the investigational drug inotersen, an antisense oligonucleotide, or a matching placebo. The Norfolk QOL-DN was administered to patients at baseline, week 35, and week 66. The Norfolk QOL-DN is a 35-item measure which captures neuropathic-related QOL. Nineteen items from the scale were determined to elicit concrete information about functioning and daily activities. Each of these 19 items used five response choices: "no problems", "very mild problems", "mild problems", "moderate problems", and "severe problems". Response options were dichotomized such that the latter two options were coded as indicating substantial impairment in functioning or activities. Descriptive analyses compared, for each item, the proportion of patients in the inotersen and placebo arms at baseline and week 66 (and change from baseline to week 66) who indicated substantial impairment. Results: At baseline, there were no differences for any Norfolk QOL-DN items in the proportions of patients who indicated substantial impairment. However, at week 66, patients receiving inotersen were less likely than those receiving placebo to indicate that they had a substantial impairment on several aspects of functioning and daily activities. Patients in the inotersen arm were half as likely as those receiving placebo to indicate a problem of pain keeping them awake at night (15% vs. 37%) and being moderately or severely bothered by the touch of bedsheets (12% vs. 27%). A noticeably smaller percentage of patients receiving inotersen than placebo reported problems with their symptoms affecting their usual activities (37% vs. 50%); having difficulty moving their fingers (47% vs 64%); feeling unsteady on their feet (49% vs 67%); having difficulty getting out of a chair (51% vs. 62%) or walking down stairs (42% vs. 58%); and having difficulty bathing (24% vs. 35%), dressing (21% vs 35%), walking (41% vs 60%), getting on/off the toilet (22% vs. 37%), and utensil use (19% vs. 31%). Percentages of change in patients from baseline to week 66 show larger increases in having substantial impairment in these functions and activities for patients receiving placebo than inotersen, with those receiving inotersen generally showing small increases, and even decreases in substantial impairment over the course of treatment. Conclusion: Following 66 weeks of treatment, hATTR amyloidosis patients receiving inotersen were less likely than those receiving placebo to report substantial impairment in many aspects of functioning and activities of daily living, including moving fingers, balance while standing, getting out of a chair, walking down stairs, bathing, dressing, walking, getting on/off the toilet, and using utensils. Ability to engage in these functions and activities was better preserved in patients treated with inotersen than placebo. These findings present a context for understanding the concrete impact of inotersen treatment on the day-to-day lives of patients with hATTR amyloidosis with polyneuropathy. Disclosures Yarlas: Optum: Employment; Akcea: Research Funding. Merlini:Millenium: Consultancy; Pfizer: Consultancy; Janssen: Consultancy; Prothena: Consultancy; Ionis: Consultancy; Akcea: Consultancy. White:Optum: Employment; Akcea: Research Funding. Sikora Kessler:Optum: Employment; Akcea: Research Funding. Lovley:Optum: Employment; Akcea: Research Funding. Guthrie:Akcea: Employment, Other: Stock Ownership. Pollock:Akcea: Employment. Gertz:Apellis: Consultancy; Amgen: Consultancy; janssen: Consultancy; Alnylam: Honoraria; Prothena: Honoraria; annexon: Consultancy; Abbvie: Consultancy; spectrum: Consultancy, Honoraria; Teva: Consultancy; Ionis: Honoraria; Medscape: Consultancy; Physicians Education Resource: Consultancy; Research to Practice: Consultancy; celgene: Consultancy.

scholarly journals The Swedish translation and cultural adaptation of the Measure of Moral Distress for Healthcare Professionals (MMD-HP)

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Catarina Fischer-Grönlund ◽  
Margareta Brännström
Keyword(s):  
Healthcare Professionals ◽  
Moral Distress ◽  
Expert Panel ◽  
Swedish Version ◽  
Face To Face ◽  
Cultural Adaption ◽  
Forward Translation ◽  
Back Translation ◽  
The Impact ◽  
Translation And Cultural Adaptation

Abstract Background Moral distress has been described as an emotionally draining condition caused by being prevented from providing care according to one’s convictions. Studies have described the impact of moral distress on healthcare professionals, their situations and experiences. The Measure of Moral Distress for Healthcare Professionals (MMD-HP) is a questionnaire that measures moral distress experienced by healthcare professionals at three levels: patient, system and team. The aim of this project was to translate and make a cultural adaption of the MMD -HP to the Swedish context. Methods The questionnaire comprises 27 items, rated according to frequency and intensity on a five-point Likert scale (0–4). The procedure for translating MMD-HP followed WHO guidelines (2020). These entailed a forward translation from English to Swedish, a back translation, expert panel validation, pretesting and cognitive face-to-face interviews with 10 healthcare professionals from various professions and healthcare contexts. Results The Swedish version of MMD-HP corresponds essentially to the concept of the original version. Parts of some items’ had to be adjusted or removed in order to make the item relevant and comprehensible in a Swedish context. Overall, the cognitive interviewees recognized the content of the items which generally seemed relevant and comprehensible. Conclusion The Swedish version of MMD-HP could be a useful tool for measuring moral distress among healthcare professionals in a Swedish healthcare context.

scholarly journals Assessment of quality of life among HIV infected people on antiretroviral therapy in a tertiary hospital, Karnataka

2021 ◽  
Author(s):  
Anjan Sreeranga ◽  
P. Pavithra ◽  
Anand D. Meundi
Keyword(s):  
Quality Of Life ◽  
Antiretroviral Therapy ◽  
Rural Areas ◽  
World Health ◽  
Cross Sectional ◽  
Infected People ◽  
Significant Difference ◽  
Patient Reported ◽  
The Impact

Background: With the availability of highly effective antiretroviral treatment, HIV is transforming into a chronic condition, whose management is now experiencing problems of other chronic diseases, where quality of life (QOL) has become an important component of overall assessment of health care and management. This study was conducted with the objective of assessing the QOL and factors influencing it in HIV infected people on antiretroviral therapy (ART).Methods: A cross-sectional study was conducted at district ART center, Hassan. Purposive sampling was used to identify 148 HIV infected people on antiretroviral therapy, who were interviewed using a pretested questionnaire, assessing QOL with the World Health Organization (WHOQOL) HIV‑BREF.Results: The average age of the study population was 37.69 years. Majority of them were males 54.7% compared to 45.3% of females. Most of them resided in rural areas (87.8%). The educational status of the subjects was poor with 33.8% of them being illiterates. The mean score was highest for spirituality and social relationships domain and least for psychological domain. Age, education and socioeconomic status did not have any influence on the QOL. There was significant difference between QOL scores and clinical stages. Individuals in stage I and II had better scores compared to stage 3 and 4. QOL scores decreased with decreasing CD4 count.Conclusions: Our findings suggest that patient-reported measures of health status and related concepts may help provide a feasible, reliable and valid method to assess the impact of HIV/AIDS improve patient outcomes. 

scholarly journals Impact of Patient Demographic Factors on Preoperative Patient-Reported Outcomes Measurement Information System (PROMIS) Physical Function, Pain Interference, and Depression Computer Adaptive Testing Scores in Patients Undergoing Shoulder and Elbow Surgery

2019 ◽  
Vol 7 (11) ◽  
pp. 232596711988454
Author(s):  
Jason E. Meldau ◽  
Peter Borowsky ◽  
Jacob Blanchett ◽  
Jeffrey Stephens ◽  
Stephanie Muh ◽  
...  
Keyword(s):  
Physical Function ◽  
Upper Extremity ◽  
Negative Correlation ◽  
Demographic Factors ◽  
Pain Interference ◽  
Measurement Information ◽  
Patient Demographic ◽  
Patient Reported ◽  
Elbow Surgery ◽  
The Impact

Background: There has been a growing emphasis in orthopaedics on providing patient-centered care. The US National Institutes of Health launched the Patient-Reported Outcomes Measurement Information System (PROMIS) initiative that incorporates patient-reported outcome measures across a number of medical domains. The relationship between PROMIS domains and the impact of patient demographic factors in those undergoing upper extremity surgery remains unclear. Purpose/Hypothesis: The goal of this study was to investigate the correlation between physical function, pain interference, and depression in patients undergoing shoulder and elbow surgery as measured by PROMIS computer adaptive testing (CAT) forms and to determine the impact of patient demographic factors. We hypothesized that there would be a significant negative correlation between physical function and both pain interference and depression in this patient population. Study Design: Cross-sectional study; Level of evidence, 3. Methods: All patients who underwent elective shoulder or elbow surgery by 3 shoulder, elbow, and/or sports medicine fellowship–trained orthopaedic surgeons were included in the study. Preoperative PROMIS–Upper Extremity (PROMIS-UE), PROMIS–Pain Interference (PROMIS-PI), and PROMIS-Depression (PROMIS-D) CAT scores were analyzed. Pearson correlations were calculated between PROMIS domains as well as between PROMIS outcomes with patient demographic factors. Results: Preoperative PROMIS CAT scores for all 3 domains were collected and analyzed from 172 unique patients (516 individual CAT forms) with shoulder and elbow injuries. A negative correlation of moderate strength was found between the PROMIS-UE and PROMIS-PI ( R = –0.61; P < .001), and a negligible correlation was found between the PROMIS-UE and PROMIS-D ( R = –0.28; P < .001). When stratified by patient demographic factors, the correlation between the PROMIS-UE and PROMIS-PI was stronger in female patients compared with male patients ( R = –0.77 vs –0.46, respectively; P < .001 for both), stronger in black patients compared with white patients ( R = –0.72 vs –0.56, respectively; P < .001 for both), and highest in current tobacco users ( R = –0.80; P < .001). Conclusion: Before shoulder and elbow surgery, patients demonstrated impairments in physical function and pain interference as measured by CAT forms, with a moderate negative correlation between baseline upper extremity physical function and pain interference scores. In certain subpopulations, such as female patients, black patients, and current tobacco users, the correlations between these tested domains were stronger than in other groups.

scholarly journals Translation and Cultural Adaptation of the Pectus Excavatum Evaluation Questionnaire From English to Catalan and Spanish

2021 ◽  
Author(s):  
Irene de Haro Jorge ◽  
Xavier Tarrado ◽  
Asteria Albert Cazalla ◽  
Natalie Garcia-Smith ◽  
Alba Fernandez-Candial ◽  
...  
Keyword(s):  
Cultural Adaptation ◽  
Pectus Excavatum ◽  
Patient Reported Outcome ◽  
Cognitive Debriefing ◽  
Life Changes ◽  
Evaluation Questionnaire ◽  
Patient Reported ◽  
Back Translation ◽  
Negative Effect ◽  
Translation And Cultural Adaptation

Abstract Background:Pectus excavatum is the most common congenital chest wall deformity. It can have a negative effect in exercise tolerance. However, cosmetic features are the most frequent concerns in these patients. The pectus excavatum evaluation questionnaire is a patient-reported outcome (PRO) tool to measure the physical and psychosocial quality of life changes after surgical repair of pectus excavatum. No specific tool has been developed in our languages to evaluate PRO in pectus excavatum patients. Our aim is to translate and culturally adapt the pectus excavatum evaluation questionnaire to European Spanish and Catalan.Methods:Guidelines for translation of PRO were followed. The pectus excavatum evaluation questionnaire, consisting of 34 items, was translated from English to Spanish and to Catalan. Three forward translations and one back translation were performed for each language. Cognitive debriefing interviews were developed.Results:The reconciliation of the forward translations revealed a 14.7% of inconsistencies for each language. The Spanish back translation showed a 64.7% of disagreement with the source, the Catalan 58.8%. Changes in each reconciled version were made to amend the diverting items. 10 patients and their parents participate in the cognitive debriefing for each language, 5 patients had been operated and 5 had not. 4 patients out of 10, for each language, showed difficulties for understanding one of the pectus excavatum evaluation questionnaire items, thus also resulted in a modification of the reconciled version.Conclusion:The translation and cultural adaptation process resulted in the development of a European Spanish and a Catalan version of the pectus excavatum evaluation questionnaire for application in Spanish and Catalan pectus excavatum patients.

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