Journal of Patient-Reported Outcomes最新文献

{"title":"A systematic review of qualitative studies examining barriers and facilitators to orthopaedic surgeon engagement with patient-reported outcome measures data.","authors":"Emma L Heath, Ian A Harris, Lorena Romero, Ilana N Ackerman","doi":"10.1186/s41687-024-00820-x","DOIUrl":"10.1186/s41687-024-00820-x","url":null,"abstract":"<p><strong>Background: </strong>Orthopaedic surgeon engagement with patient-reported outcome measures (PROMs) data has not been comprehensively evaluated, despite increasing uptake of orthopaedic PROMs programmes globally. The aim of this review was to systematically identify, appraise and synthesise qualitative evidence on barriers and facilitators to orthopaedic surgeons' engagement with PROMs data and their use of these data to support clinical practice.</p><p><strong>Methods: </strong>Six databases (MEDLINE, EMBASE, COCHRANE CENTRAL, PSYCINFO, CINAHL and EMCARE) were searched from January 2000-March 2024 to identify potentially eligible qualitative studies. Established systematic review methods were used for screening and data extraction, applying PRISMA guidelines. Quality assessment was undertaken using the Joanna Briggs Institute tool for qualitative research.</p><p><strong>Results: </strong>Eight studies were eligible for inclusion; of these, five studies were qualitative and three studies were mixed-method designs incorporating a qualitative component. Three studies were specific to orthopaedic surgeons and the remaining five studies comprised of mixed samples of health professionals including orthopaedic surgeons. Only one study was classified as being of high methodological quality. Key barrier themes for orthopaedic surgeons were logistical issues, difficulty interpreting and understanding PROMs, and scepticism of the value of PROMs in clinical care. Key enabler themes included improvements to PROMs infrastructure, surgeon education around the potential value, uses and interpretation of PROMs data, aggregate reporting of PROMs data and early involvement of surgeons in the planning and development of PROM systems.</p><p><strong>Conclusion: </strong>While these studies highlight some practical considerations and opportunities that can be addressed through clinician education, there is little high-quality evidence on factors that influence orthopaedic surgeon engagement with PROMs data. Robust qualitative research is needed to better inform tailored support and assist surgeons in integrating PROMs data within orthopaedic care.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"144"},"PeriodicalIF":2.4,"publicationDate":"2024-12-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11655713/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142847938","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":"Development of a standard set of key work-related outcomes for use in practice for patients with cardiovascular disease: a modified Delphi study.","authors":"Marije E Hagendijk, Nina Zipfel, Jan L Hoving, Marijke Melles, Philip J van der Wees, Sylvia J van der Burg-Vermeulen","doi":"10.1186/s41687-024-00825-6","DOIUrl":"10.1186/s41687-024-00825-6","url":null,"abstract":"<p><strong>Background: </strong>To facilitate the maintenance or resumption of participation in work for patients with cardiovascular disease (CVD), there is a need for high-quality work-focused healthcare. According to the concept of value-based healthcare, quality of care can be enhanced by understanding the outcomes that matter most to patients. However, a major challenge in assessing quality of work-focused healthcare in practice is the lack of consensus on which work-related outcomes should be measured.</p><p><strong>Objective: </strong>The objective of this study was to identify a standard set of key work-related outcomes for patients with CVD to be used in practice of work-focused healthcare in the Netherlands, including standardised outcome measures and associated case mix factors. This standard set is intended to assist occupational and other health professionals in delivering work-focused healthcare that meets a patient's individual needs regarding work participation, and to enhance patients' engagement in their own work-focused care process.</p><p><strong>Methods: </strong>A 2-round RAND-modified Delphi process was conducted. The process included literature searches, consecutive research team meetings, and several meetings and rounds of voting by a working group. The working group consisted of patients with CVD (n = 6) and health professionals representing different stakeholders (n = 11) involved in work-focused healthcare for this patient population in the Netherlands. Consensus was reached over four phases: (1) establishing the scope of the standard set and defining the population, (2) prioritising and defining the outcome domains, (3) selecting the outcome measures for the most important domains, including clinical data and patient-reported data, and (4) selecting and defining case mix factors.</p><p><strong>Results: </strong>A 23-item patient-reported questionnaire was developed, called the Value@WORK-Q23, including questions on nine work-related outcome domains considered most important for patients with CVD: (1) work participation, (2) physical work ability, (3) mental work ability, (4) suitable work, (5) support from the work environment, (6) flexibility of the work environment, (7) communication with the patient, (8) person-centredness, and (9) interdisciplinary communication. In addition, nine case mix variables was selected, comprising demographic-, disease-, and work factors.</p><p><strong>Conclusions: </strong>The Value@WORK-Q23 provides guidance on measuring the most important work-related outcomes for patients with CVD. Using this work-related set in practice, in addition to existing disease-specific standard sets for CVD may facilitate the provision of high-value work-focused healthcare for this patient population.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"147"},"PeriodicalIF":2.4,"publicationDate":"2024-12-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11655757/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142847944","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":"Assessing usability of electronic patient-reported outcome measures in older people with and without a rare dermatologic disorder.","authors":"Calvin N Ho, Anna Kündig, Lila Bahadori, Katy Roat, Rachel Bruce, Caroline P Goswami, Kimberly Kelly, Thomas Moll","doi":"10.1186/s41687-024-00821-w","DOIUrl":"10.1186/s41687-024-00821-w","url":null,"abstract":"<p><strong>Background: </strong>Robust and well-defined data collection is important when using electronic patient-reported outcome measures (ePROMs) in clinical studies. Questions have been raised as to whether older age may be a barrier to data collection due to patients' unfamiliarity with electronic devices. Older adults may also have underlying health conditions that affect their ability to fill out patient-reported outcome measures (PROMs) on electronic devices. The aim of this observational, qualitative research study was to evaluate the usability of electronic PROMs (ePROMs) on a tablet and smartphone in older participants with and without bullous pemphigoid (BP).</p><p><strong>Methods: </strong>Older people with and without BP were recruited in the US and France. They participated in 60-min in-person interviews, with moderators observing their completion of various tasks, including ePROMs, using a tablet and smartphone. Participants were scored on ease of task completion using a scale from 1 to 5.</p><p><strong>Results: </strong>A total of 12 participants were recruited (≥65 years old; six each with and without BP [all participants without BP were ≥75 years old]). Most participants (83%) could easily and confidently perform most assigned tasks on both the tablet and smartphone. Although select tasks required assistance, all participants were eventually able to complete all tasks. Overall, ePROM usability did not correlate with age, sex, country, or disease state. Feedback on the general usability of both electronic devices was largely positive, and most participants (n = 11; 92%) were willing to use them. Participants were generally pleased with the training modules offered on both devices, describing the training as sufficient, straightforward, and helpful. In total, 25 usability issues were identified, which fell into three categories: incomplete instructions, unclear language, and insufficient technical/visual design. Participants provided feedback on how to enhance device usability.</p><p><strong>Conclusions: </strong>The results suggest that older people can confidently use a tablet or smartphone for ePROM completion, particularly with appropriate training. ePROMs should be designed with the needs of the target patient population in mind. These results can be leveraged to improve clinical data recording, optimize device usability, and enhance the user experience for older people and those with functional or physical limitations.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"145"},"PeriodicalIF":2.4,"publicationDate":"2024-12-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11655768/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142847941","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":"Improvements in quality of life of patients with multiple sclerosis receiving alemtuzumab in clinical practice: the LEMVIDA study.","authors":"José Eustasio Meca-Lallana, Sara Eichau, Bonaventura Casanova, Elena Álvarez Rodríguez, Antonio Pato, Mireia Forner, Baldo Toledo","doi":"10.1186/s41687-024-00822-9","DOIUrl":"10.1186/s41687-024-00822-9","url":null,"abstract":"<p><strong>Background: </strong>Alemtuzumab is a humanized monoclonal antibody approved for the treatment of relapsing-remitting multiple sclerosis (RRMS). Its efficacy and safety have been widely demonstrated in clinical trials, but experience from real-world cohorts is also needed to support its clinical use. Quality of life (QoL) outcomes are an important complement to the clinical benefits of treatment, offering a patient-centered perspective on how the drug contributes to general well-being. In this line we aimed to evaluate the QoL of patients treated with alemtuzumab in clinical practice.</p><p><strong>Methods: </strong>This prospective 3-year multicenter study was carried out in adult patients diagnosed with RRMS who had started alemtuzumab according to clinical practice within 8 weeks before inclusion. The primary endpoint was the change in QoL over three years of treatment with alemtuzumab using the 29-item Multiple Sclerosis Impact Scale (MSIS-29). Secondary endpoints included changes from baseline in the 21-item Modified Fatigue Impact Scale (MFIS-21), Beck Depression Inventory (BDI-II), Symbol Digit Modalities Test (SDMT, oral version) and Work Productivity. Disability worsening was also assessed based on the Expanded Disability Status Scale (EDSS), along with the annualized relapse rate (ARR) and radiological activity.</p><p><strong>Results: </strong>A cohort of 165 patients was analyzed (mean age 38.6 years, mean disease duration 8.5 years, mean EDSS score 3.3). MSIS-29 physical domain scores decreased significantly from baseline by a mean of 7.2 ± 1.8 points at year 1, 6.4 ± 2.2 at year 2 and 5.6 ± 2.3 at year 3 (p < 0.05 in all cases). Similarly, MSIS-29 psychological domain scores decreased significantly by a mean of 7.9 ± 2.4 points at year 1, 12.8 ± 2.9 at year 2 and 13.2 ± 3.0 at year 3 (p < 0.05 in all cases). Significant reductions from baseline were also evidenced in MFIS-21 and BDI-II scores, while SDMT scores remained unchanged. During the 3 years on alemtuzumab, the ARR was 0.15, representing an 83% reduction from the 2 years before initiation. At 3 years, 81.5% of patients were free from radiological activity and 87% were free from disability worsening.</p><p><strong>Conclusions: </strong>These results indicate early and substantial improvements in patients' perception of their QoL and functioning with alemtuzumab that were sustained over three years.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"148"},"PeriodicalIF":2.4,"publicationDate":"2024-12-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11655941/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142847956","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":"Swedish translation and content evaluation of the Empowerment Audiology Questionnaire (EmpAQ-15).","authors":"Josefina Larsson, Elin Karlsson","doi":"10.1186/s41687-024-00819-4","DOIUrl":"10.1186/s41687-024-00819-4","url":null,"abstract":"<p><strong>Objective: </strong>Translating the newly developed Empowerment Audiology Questionnaire, EmpAQ-15 to Swedish, and performing content validation on the Swedish version.</p><p><strong>Design: </strong>Best-practice principles using forward and back translations which were revised by a committee prior to field testing. Field testing was conducted by cognitive interviews with hearing-aid users talking through and rating the items in the translated questionnaire. Content validation was assessed by examining equivalence, accessibility, acceptability, comprehensiveness, and relevance of interview data. Questionnaire introduction and scoring instructions were evaluated by Swedish audiologists.</p><p><strong>Study sample: </strong>Ten adult native speaking Swedish hearing aid users, recruited with purposive sampling. Maximum variation based on age, gender, hearing aid usage, and degree of hearing loss. Seven Swedish audiologists assessing instructions for result calculations.</p><p><strong>Results: </strong>The conceptual equivalence between the Swedish translation and the English original questionnaire was judged to be high overall. The instructions and majority of items were experienced as accessible, acceptable, comprehensive, and relevant. The audiologists showed that they could follow scoring instructions and reason about the results.</p><p><strong>Conclusions: </strong>This content validity study was the first step towards a Swedish version of a self- report measure of Empowerment for people with hearing loss.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"143"},"PeriodicalIF":2.4,"publicationDate":"2024-12-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11652430/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142839772","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":"Validation of the Assessment of Rehabilitation Needs Checklist in a Swedish cancer population.","authors":"Emma Ohlsson-Nevo, Maria Fogelkvist, Lars-Olov Lundqvist, Johan Ahlgren, Jan Karlsson","doi":"10.1186/s41687-024-00818-5","DOIUrl":"10.1186/s41687-024-00818-5","url":null,"abstract":"<p><strong>Background: </strong>Assessment of Rehabilitation Needs Checklist (ARNC), has been developed to assess rehabilitation need in cancer patients and is recommended by the Confederation of Regional Cancer Centres in Sweden, known as Hälsoskattningen. The aim of the study was to test the reliability and validity of the ARNC, mainly by comparing it with the Distress thermometer and EORTC QLQ-C30.</p><p><strong>Methodology: </strong>A sample of 993 persons identified in the Swedish cancer register. The study participants were diagnosed with cancer in 2021 in the Mid Sweden region. The psychometric methods tested reliability and validity including factor analysis.</p><p><strong>Results: </strong>The response rate was 38%. The test-retest analysis showed that ICC was 0.80 or higher for 12 of the ARNC items. A strong or modarete correlation between ARNC and the other instruments was found in all functional scales and for most items. CFA of the 13-item two-factor model showed a RMSEA value of 0.04, CFI and TLI values of 0.97 and 0.96, and a SRMR value of 0.05, indicating a satisfactory model fit.</p><p><strong>Conclusion: </strong>The evaluation of the ARNC suggests that it is an acceptable and reliable screening instrument for detecting symptoms and signs indicating a possible need of rehabilitation. The medium to strong correlations between ARNC items and the EORTC QLQ- C30 items and scales suggest that ARNC could be an alternative also for research purposes when a shorter and less comprehensive instrument is needed. The simple design could be an advantage as it lowers the burden on cancer patients.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"142"},"PeriodicalIF":2.4,"publicationDate":"2024-12-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11621288/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142787264","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":"Trajectory, interactions, and predictors of higher symptom burden during induction therapy for multiple myeloma.","authors":"Mona Kamal, Qiuling Shi, Shu-En Shen, Charles Cleeland, Xin Shelley Wang","doi":"10.1186/s41687-024-00817-6","DOIUrl":"10.1186/s41687-024-00817-6","url":null,"abstract":"<p><strong>Background: </strong>Patients with multiple myeloma (MM) experience disabling symptoms that are difficult to manage and may persist after induction therapy. Monitoring disease-related and induction therapy-induced symptoms and identifying patients at greater risk for high symptom burden are unmet clinical needs. The objective of this study was to examine the trajectories of symptom severity over time and identify predictors of high symptom burden during MM induction therapy.</p><p><strong>Methodology: </strong>Eligible patients with MM rated their symptoms by completing the MD Anderson Symptom Inventory MM module repeatedly during 16 weeks of induction therapy. Group-based trajectory modeling identified patient groups with persistently high-severity (versus low-severity) symptom trajectories over time. Quality of life (QOL) and affective and physical functioning status were assessed. Predictors of high symptom burden were examined by regression analysis.</p><p><strong>Results: </strong>Sixty-four MM patients participated. Most patients (89%) received bortezomib-based therapy. The five most-severe symptom trajectory groups were pain (59%), muscle weakness (46%), numbness (42%), disturbed sleep (41%), and fatigue (31%). Patients in the high-severity trajectory group for the five most-severe symptoms (31% of the sample) were more likely to have high-severity cognitive and affective symptoms. Patients in the high-severity trajectory groups for fatigue, muscle weakness, disturbed sleep, and bone aches were more likely to have high pain scores (all p < 0.05). Significant increases over time were observed in scores for pain (estimate: 0.026), numbness (0.051), muscle weakness (0.020), physical items (0.028), and affective items (0.014) (all p < 0.05). A higher baseline composite score of the five most-severe symptoms predicted worse QOL (- 6.24), and poor affective (0.80) and physical (1.10) statuses (all p < 0.01). Female sex predicted higher risk for being in the high-severity trajectory group for muscle weakness.</p><p><strong>Conclusion: </strong>Almost one-third of MM patients suffer from up to 5 moderate to severe symptoms persistently, including pain, muscle weakness, numbness, disturbed sleep, and fatigue. Importantly, these results identify a group of symptoms that should be monitored and managed as part of routine patient care during MM induction therapy and suggest that pre-therapy pain management is necessary for better symptom control.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"141"},"PeriodicalIF":2.4,"publicationDate":"2024-12-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11618278/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142773160","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":"Validation of the German version of the state mindfulness scale for physical activity in a clinical sample.","authors":"Jan Wallner, Leona Kind, Carolin Donath, Johannes Kornhuber, Katharina Luttenberger","doi":"10.1186/s41687-024-00815-8","DOIUrl":"10.1186/s41687-024-00815-8","url":null,"abstract":"<p><strong>Background: </strong>Mindfulness has been studied as a treatment option for a large range of psychological disorders and is associated with a multitude of positive psychological outcomes. There are now several scales for measuring mindfulness as both a trait and a state. As mindfulness potentially plays a critical role in maintaining physical activity habits, the State Mindfulness Scale for Physical Activity (SMS-PA) was developed to specifically measure mindfulness in a physical activity context. This study aimed to provide validity evidence for a German version of the SMS-PA (henceforth called SMS-PA-G) in a clinical sample.</p><p><strong>Methods: </strong>We used baseline data from 129 participants in the randomised controlled trial 'New Ways to Cope with Depression'. The sample, which was screened for clinical depression symptoms, completed the SMS-PA-G and several other psychometric scales for capturing state mindfulness, self-efficacy, sense of coherence, anxiety, depression, and physical activity. We conducted reliability and item analyses and ran a confirmatory factor analysis. Also, we assessed construct validity through correlations with the abovementioned scales and through differences in SMS-PA scores between physically active and nonactive participants.</p><p><strong>Results: </strong>The mean SMS-PA-G score in our sample was 25.3 with a standard deviation of 8.5. The item and reliability analyses provided satisfactory Cronbach's alpha and discriminatory power values. The confirmatory factor analysis showed that physical activity mindfulness can best be described via a bifactor model, with specific mind and body factors and a general mindfulness factor. We found the expected relationships with the attention subscale of state mindfulness, self-efficacy, and sense of coherence but did not find them with the awareness subscale of state mindfulness, depression, and anxiety. As hypothesised, physically active participants exhibited higher SMS-PA-G values than nonactive participants.</p><p><strong>Conclusions: </strong>The SMS-PA-G is an internally consistent test instrument that captures respondents' general physical activity mindfulness and their attention to mental and bodily events. Whereas validity evidence was generally supportive of the SMS-PA-G, its relationships with other constructs require further investigation.</p><p><strong>Trial registration: </strong>ISRCTN, ISRCTN12347878. Registered 28 March 2022, https://www.isrctn.com/ISRCTN12347878 .</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"140"},"PeriodicalIF":2.4,"publicationDate":"2024-12-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11612046/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142773162","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":"Reflection on a professional advisory group to inform the use of patient empowerment tools within an implementation science research project.","authors":"Katherine E Woolley, Nia J Jones, Robert Letchford, Kathleen L Withers","doi":"10.1186/s41687-024-00811-y","DOIUrl":"10.1186/s41687-024-00811-y","url":null,"abstract":"<p><p>Professional advisory groups, with patient and public involvement (PPI) representatives, can be used for co-production within research projects. This paper aims to document the benefits and challenges of undertaking stakeholder and participant engagement for an implementation research project within NHS (National Health Service) Wales. A patient focused research project, initiated by clinicians, on the use of patient empowerment tools within standard patient care, used a professional advisory group to identify appropriate tools to use within the research proposal. The professional advisory group was made up of therapists, NHS stakeholders, academics and PPI representatives. A hybrid-meeting style was employed to optimise participation for all members of the group. Benefits of the professional advisory group included increased engagement and ownership of the study due to co-creation, and obtaining important contextual information and lived experience. However, challenges included keeping the discussion on topic due to pre-conceived agendas, pleasing everyone in the room due to varied backgrounds, and technological issues. Future professional advisory groups should consider how to facilitate the full involvement of PPI representatives within the discussion and having a variety of resources to present the topic of discussion. Furthermore, clearly communicating what the purpose and direction of the research project is and how it fits into the wider system, should be carefully considered. Overall, it was recognised that the professional advisory group was of significant value to shape the research proposal. Due to the situational challenges faced by healthcare professional within the NHS and preconceived ideas for solutions, it is hoped that by involving stakeholders early in the process there will be greater acceptance and usability of the research findings.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"139"},"PeriodicalIF":2.4,"publicationDate":"2024-12-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11612065/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142773268","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":"Translation and cross-cultural adaptation of the Nepali version of Sexual Interest and Satisfaction Scale (SIS): a cross-sectional study.","authors":"Govinda Mani Nepal, Sonu Maharjan, Nima Sherpa","doi":"10.1186/s41687-024-00816-7","DOIUrl":"10.1186/s41687-024-00816-7","url":null,"abstract":"<p><strong>Background and objective: </strong>Individuals with Spinal Cord Injury (SCI) rank regaining sexual function as their top priority. Sexual dissatisfaction often leads to low self-esteem, reduced intimacy, and relationship difficulties and hence forms an essential part of the rehabilitation process. In Nepal, where people generally hold fairly traditional views about sex and sexual health, a sexual outcome measure that is culturally sensitive is a must for addressing sexual problems. No study has yet been carried out to investigate the impact of SCI on sexual attitudes and satisfaction in Nepal. Therefore, this study aims to translate and cross-culturally adapt the Sexual Interest and Satisfaction Scale (SIS) in the Nepali language.</p><p><strong>Methods: </strong>(1) Forward translation: Three translators translated the English version of SIS into Nepali. (2) Synthesis: The three translated versions were synthesized into a draft version. (3) Expert committee review: The expert committee meetings were held to reach a consensus for a sensible and applicable pre-final version of SIS. (4) Pre-test: The pre-final version of SIS was tested on 25 individuals with SCI. Their opinions and comprehension were documented for each question, and subsequent modifications were made to form the final version of Nepali SIS (SIS-NP). The internal consistency of SIS-NP was calculated using Cronbach's alpha.</p><p><strong>Results: </strong>The translation and cross-cultural adaptation segregated the questions into two divisions: first, which could be answered by everyone irrespective of their sexual partner status, and second, which could only be answered by those with a sexual partner. No changes were made to the original questions; however, essential clarifications and definitions were added. A total of 66 individuals with SCI participated to evaluate internal consistency with a median duration of injury of 9.5 years (IQR = 9.25). Unmarried participants accounted for 40% (n = 27). Internal consistency was found to be 0.74.</p><p><strong>Conclusion: </strong>SIS was translated to Nepali, adapting standard recommended guidelines. SIS-NP demonstrated adequate internal consistency to be used in SCI.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"138"},"PeriodicalIF":2.4,"publicationDate":"2024-11-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11607224/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142751904","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}