Measuring Healthcare Experiences Among People With Intellectual Disability: A Rapid Evidence Synthesis of Tools And Methods.

OBJECTIVES: Patient-reported experience measures (PREMs) collect essential data for service and system-wide quality improvement and performance monitoring toward value-based care. However, the experiences of people with intellectual disability, who have high healthcare utilization couple with poorer outcomes, are often omitted from system-wide PREMs and service-wide PREMs data. The use of PREMs instruments for data collection among people with intellectual disability has not been explored. This review aimed to identify and synthesize measurement tools and approaches that have been used to gather patient-reported experience data from people with intellectual disability. METHODS: Rapid evidence assessment was used, in which comprehensive search strategies were applied to electronic databases and gray literature. Narrative synthesis was used with the included articles to address the review aim. RESULTS: A total of 48 documents were included; 26 peer-reviewed journal articles and 22 articles from gray literature. Patient-reported experiences have been gathered from people with intellectual disabilities in relation to specific services or encounters, predominantly using qualitative methods. To date, there is an absence of targeted service- or system-wide surveys. Existing clinic- and condition-specific instruments provide insight for broader application. CONCLUSIONS: Patient experience assessment among people with intellectual disability requires consideration of (1) how individuals are identified and approached, (2) the content, design and structure of measurement instruments, and (3) the process by which data are collected, and (4) how it may be applied to create change. Despite the collection of patient experience data from people with intellectual disability, there is little research available about how this information is later used to support health service improvement. Applying PREMs for quality improvement is critical to realize the improvements to healthcare provision required for people with intellectual disability toward equitable care quality.

Population-based norms for the human papillomavirus-quality of life (HPV-QoL) questionnaire: A cross-sectional multicenter study.

INTRODUCTION: Human papillomavirus (HPV) diagnosis has a considerable emotional and psychological impact on women. To evaluate the impairment this infection leads to regarding quality of life (QoL), several scales have been suggested, such as the human-papillomavirus-quality-of-life (HPV-QoL) questionnaire. This has been validated for the Spanish population and measures the impact of HPV on health-related-quality-of-life (HR-QoL). However, normative values are yet to be developed. Thus, the objective was to describe the population-based norms of the HPV-QoL for Spanish women aged 25-65 years and to test the questionnaire's construct validity. MATERIAL AND METHODS: This was a cross-sectional nationwide multicenter study. Women from outpatient clinics in Spain aged 25-65 years, with a diagnosis of past or active HPV infection were recruited. The central tendency, dispersion, and percentiles were calculated for the total score and its dimensions for each age group. Construct validity was tested by analyzing age groups and their correlations with other related scales (12-Item General Health Questionnaire [GHQ-12], Female Sexual Function Index [FSFI], and Hospital Anxiety and Depression Scale [HADS]). RESULTS: A total of 1352 women were included in the study. The norms showed moderate and significant coefficients of correlation with other related scales. Significant differences between age strata groups were found according to educational level, sexual dysfunction, sexual activity, mental deterioration, and severity of anxiety and depression symptoms (p < 0.001 in all cases). The total score differed significantly between the groups (p = 0.006). Significant differences in the contagiousness, health, and sexuality dimensions (p < 0.05) were found among the groups. It was seen that HPV infection impaired women's QoL. Dimensions within all test age groups (p < 0.001 in all cases) were significantly different, with the health dimension being the highest contributor to women's QoL impairment, whereas social well-being was the main determinant of QoL. CONCLUSIONS: Population-based norms for the novel HPV-QoL questionnaire showed adequate validity and could be a useful tool for assessing the impact of QoL among women with HPV in Spain.

Expanded perspectives: integrating clinicians' insights for comprehensive patient-reported outcomes in value-based healthcare.

The manuscript explores value-based healthcare (VBHC) and its role in assessing healthcare quality beyond clinical metrics. It identifies four value types: personal, technical, allocative, and societal. Emphasizing the integration of diverse stakeholder perspectives, including patients, families, and clinicians, the study highlights the importance of patient- and family-reported measures (PROMs and PREMs) and clinician input. Clinicians' insights on treatment feasibility and effectiveness are crucial for a holistic understanding of healthcare quality. The manuscript advocates for combining machine learning with participatory approaches to enhance data analysis and continuous quality improvement in VBHC, driving better outcomes for patients and communities.

Factors in early pregnancy predicting pregnancy-related pain in the second and third trimester.

INTRODUCTION: Pain during pregnancy affects women's well-being, causes worry and is a risk factor for the child and the mother during labor. The aim was to investigate the relative importance of an extensive set of pregnancy-related physiological symptoms and psychosocial factors assessed in the first trimester compared with the occurrence of pregnancy-related pain symptoms later in the pregnancy. MATERIAL AND METHODS: Included were all women who booked an appointment for a first prenatal visit in one of 125 randomly selected general practitioner practices in Eastern Denmark from April 2015 to August 2016. These women answered an electronic questionnaire containing questions on the occurrence of five pregnancy-related pain symptoms: back pain, leg cramps, pelvic cavity pain, pelvic girdle pain and uterine contractions. The questionnaire also included sociodemographic questions and questions on chronic diseases, physical symptoms, mental health symptoms, lifestyle and reproductive background. The questionnaire was repeated in each trimester. The relative importance of this set of factors from the first trimester on the five pregnancy-related pain symptoms compared with the second and third trimesters was assessed in a dominance analysis. RESULTS: A total of 1491 women were included. The most important factor for pregnancy-related pain in the second trimester and third trimester is the presence of the corresponding pain in the first trimester. Parity was associated with pelvic cavity pain and uterine contractions in the following pregnancies. For back pain and pelvic cavity pain, the odds increased as the women's estimated low self-assessed fitness decreased and had low WHO-5 wellbeing scores. CONCLUSIONS: When including physical risk factors, sociodemographic factors, psychological factors and clinical risk factors, women's experiences of pregnancy-related pain in the first trimester are the most important predictors for pain later in pregnancy. Beyond the expected positive effects of pregnancy-related pain, notably self-assessed fitness, age and parity were predictive for pain later in pregnancy.

Introducing standard patient-reported measures (PRMs) into routine maternity care: A pre-implementation qualitative study on women's perspectives in Finland.

BACKGROUND: Systematically using standard patient-reported measures (PRMs) in clinical routines is trending. The International Consortium for Health Outcomes Measurement (ICHOM) has developed condition-specific standard sets of patient-centred measures, one of which is the Pregnancy and Childbirth Standard (PCB) set, where standard PRMs are included. There is limited knowledge on the use of ICHOM PCB set-included PRMs (ICHOM-PCB-PRMs) in routine care. This study investigates women's perspectives on the future implementation of standard ICHOM-PCB-PRMs in routine maternity care in Finland. METHODS: Semi-structured interviews were conducted. Pregnant and postpartum women were asked to evaluate each ICHOM-PCB-PRM in several dimensions, e.g., importance and quality of questions, and to provide their views on future implementation in terms of benefits, difficulties, and practices. With the predefined topics and themes, deductive analysis was applied. Ethical committee approval (HUS 220/880/2015) and research permissions were obtained. RESULTS: 22 women participated. Participants felt that most of the ICHOM-PCB-PRMs were important, relevant, understandable, and appropriately designed, and agreed that some changes in ICHOM-PCB-PRMs were needed, e.g., adding other important measures, changing the wording, and adding open-ended questions. Women would be hesitant to answer questions honestly if follow-up actions were unclear. Most "outcome" measures could be asked repeatedly as maternal health status changes over time, and "experience" measures could be asked separately for different service providers. Disagreements regarding data collection at birth were observed. PRMs were regarded as a way for women to express their thoughts and feelings. Our participants were concerned about the possible consequences of negatively answering the PREMs questions and the availability of follow-up care. Participants expected that they could answer short and easy questions digitally before appointments, and that instructions and follow-up actions based on their answers should be available. CONCLUSION: ICHOM-PCB-PRMs could be applicable in Finnish maternity care, but some modifications may be required. Careful consideration is needed regarding how and when PRMs questions are asked for eliciting more accurate and honest answers and minimizing women feeling judged, embarrassed, or offended. Follow-ups should be available according to women's responses and needs. This study provides insights on the adoption and implementation of standard PRMs in routine maternity care.

Relationships between self-perceived and clinical expression of pain and function differ based on the underlying pathology of the human hip.

BACKGROUND: Patient-reported outcomes are commonly used to assess patient symptoms. The effect of specific hip pathology on relationships between perceived and objectively measured symptoms remains unclear. The purpose of this study was to evaluate differences of function and pain in patients with FAIS and DDH, to assess the correlation between perceived and objective function, and to determine the influence of pain on measures of function. METHODS: This prospective cross-sectional study included 35 pre-operative patients (60% female) with femoroacetabular impingement syndrome (FAIS) and 37 pre-operative patients (92% female) with developmental dysplasia of the hip (DDH). Objectively measured function (6-min walk [6MWT], single leg hop [SLHT], Biodex sway [BST], hip abduction strength [HABST], and STAR excursion balance reach [STAR] tests), patient-reported function (UCLA Activity, Hip Outcome Score [HOS], Short Form 12 [SF-12], and Hip Disability and Osteoarthritis Outcome Score [HOOS]), and patient-reported pain (HOOS Pain, visual analogue scale (VAS), and a pain location scale) were collected during a pre-surgical clinic visit. Between-group comparisons of patient scores were performed using Wilcoxon Rank-Sum tests. Within-group correlations were analyzed using Spearman's rank correlation coefficients. Statistical correlation strength was defined as low (r = ± 0.1-0.3), moderate (r = ± 0.3-0.5) and strong (r > ± 0.5). RESULTS: Patients with DDH reported greater pain and lower function compared to patients with FAIS. 6MWT distance was moderately-to-strongly correlated with a number of patient-reported measures of function (FAIS: r = 0.37 to 0.62, DDH: r = 0.36 to 0.55). Additionally, in patients with DDH, SLHT distance was well correlated with patient reported function (r = 0.37 to 0.60). Correlations between patient-reported pain and objectively measured function were sparse in both patient groups. In patients with FAIS, only 6MWT distance and HOOS Pain (r = -0.53) were significantly correlated. In patients with DDH, 6MWT distance was significantly correlated with VAS Average (r = -0.52) and Best (r = -0.53) pain. CONCLUSION: Pain is greater and function is lower in patients with DDH compared to patients with FAIS. Moreover, the relationship between pain and function differs between patient groups. Understanding these differences is valuable for informing treatment decisions. We recommend these insights be incorporated within the clinical continuum of care, particularly during evaluation and selection of surgical and therapeutic interventions.

Validation of the Turkish version of the Obstetric Quality-of-Recovery score 11 (ObsQoR-11T) after cesarean delivery.

BACKGROUND: To translate and validate the psychometric characteristics of a Turkish version of the Obstetric Quality-of-Recovery score 11 tool used to measure post-cesarean delivery recovery in Turkish-speaking patients. METHODS: After the original English version of the Obstetric Quality-of-Recovery score 11 tool was translated into Turkish; it was psychometrically validated to assess the post-cesarean delivery quality of recovery. Validity, reliability, and feasibility were investigated. The Obstetric Quality-of-Recovery score 11 tool was administered to Turkish-speaking patients on postoperative day 1. On postoperative day 1, a global health visual analog scale was used to assess the patient's perceived global recovery. RESULTS: One hundred and eighty-six patients completed their questionnaires, providing a completion rate of 97.38%. The Spearman rho (ρ) correlation coefficient between the Obstetric Quality-of-Recovery score and global health visual analog scale (0-100 points) was 0.850 at postoperative day 1 following surgery (P < 0.001). Internal consistency, measured using Cronbach's alpha, was 0.822. The split-half coefficient was 0.708. The Obstetric Quality-of-Recovery score differed significantly between the emergency and elective cesarean delivery groups (80 (41-104) vs. 83.3 (51-102); P < 0.05). The test-retest reliability of the Obstetric Quality-of-Recovery score items was more than 0.6 in 82% of cases, indicating good repeatability and reliability. CONCLUSION: The Obstetric Quality-of-Recovery score 11 is a valid and reliable tool to measure the post-cesarean quality of recovery in Turkish-speaking patients. The psychometric properties of the Turkish version of the scale to measure the post-cesarean quality of recovery were similar to those of the seminal English version.

Sexual quality of life assessment in young women with breast cancer during adjuvant endocrine therapy and patient-reported supportive measures.

PURPOSE: Sexual quality of life (QoL) is affected during and after breast cancer (BC) treatment. The purpose was to investigate sexual and global QoL and patient-reported measures to address this issue in young women (< 51 years) with BC after the acute treatment phase, during adjuvant endocrine therapy. METHODS: Three EORTC questionnaires and an additional specific questionnaire, developed for the study, were used to assess sexual and global QoL and patient-reported supportive measures in BC patients who had received their endocrine therapy for at least 24 months. Among the 54 eligible patients, 45 (83%) agreed to participate in the study. RESULTS: We showed a deterioration in sexual QoL and poor communication with healthcare professionals. Most patients (88.9%) declared that it was important that sexuality should be discussed with caregivers and that the partner should also be involved. Most patients (60%) had taken at least one action to overcome their sexual problems. Most of these interventions (63%) originated from the patient herself. CONCLUSIONS: Sexual QoL is a major issue in young BC patients and is poorly addressed by healthcare professionals. Most of the supportive methods used by the patients to overcome these side effects were on their own initiative. Communication and counseling on sexuality by healthcare professionals need to be improved during BC treatment. Patients suggested supportive measures they would find useful and appropriate to develop in the clinic. The final goal is to improve the sexual QoL of BC patients with the appropriate intervention and support.

Translation, cross-cultural adaptation, and validation of the Greek version of the Multiple Sclerosis Intimacy and Sexuality Questionnaire-19.

INTRODUCTION: Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 (MSISQ-19) explores optimally impact of MS on sexual activity/satisfaction/intimacy. AIM: The present study aims to provide the only validation of the Greek Version of MSISQ-19, and compare results to validation studies in other languages. METHODS: The original/English version of the MSISQ-19 was translated into Greek according to standardized guidelines, while validity/reliability, correlations with other scales and sexual dysfunction prevalence were tested. Subjects were requested to complete all questionnaires and MSISQ-19, being re-tested three weeks later. Construct-validity of the Greek version of the MSISQ-19 was confirmed with principal-component-analysis. Bartlett's test assessed correlation-adequacy between items. Pearson's correlation explored internal-construct-validity between subscales and overall score, and external-construct-validity with disease-status variables, cognitive testing and patient-reported outcomes regarding fatigue, depression/anxiety, MS impact, and quality of life. RESULTS: 201 PwMS (130 female). Mean age was 39.3 ± 11.8 years with median disease-duration 11.7 ± 7.9 years. 79.1% RRMS, PPMS (10.4%) and SPMS (10.4%). Cronbach's alpha coefficient was 0.949. MSISQ-19 correlations between items were large. Significant associations of sexual dysfunction were identified with age (rho = 0.392, p < 0.01), years of education (rho=-0.199, p = 0.006), the Expanded Disability Status Scale (rho = 0.518, p < 0.01) and MS duration (rho = 0.354, p < 0.01). Correlations were disclosed with the Brief International Cognitive Assessment for MS (rho=-0.247, p < 0.05), Modified Fatigue Impact Scale (rho = 0.374, p < 0.05), Depression Anxiety Stress Scale (rho = 0.375, p < 0.05), Multiple Sclerosis Impact Scale (rho = 0.442, p < 0.05), and EuroQoL-five-dimensional instrument (rho = 0.375, p < 0.05). Internal consistency of the Greek version of the MSISQ-19 was confirmed with Cronbach's alpha. Test-retest reliability (31 PwMS) was excellent with intraclass-correlation-coefficients > 0.90. CONCLUSION: Besides Greek MSISQ-19 satisfactory validity/reliability/reproducibility and being first to include cognitive-testing, authors estimated sexual-dysfunction prevalence affecting half PwMS.HIGHLIGHTSThis study provides the only validation of the Greek Version of the MSISQ-19.The latter was found with satisfactory validity, reliability and reproducibility.50% of the Greek PwMS sample was found to be afflicted with sexual dysfunction.This is also the first validation study to examine associations with cognitive testing.Sexual function is still an underestimated functionality parameter upon examination.

Intensive care-treated COVID-19 patients' perception of their illness and remaining symptoms.

BACKGROUND: The remaining symptoms in patients with coronavirus disease 2019 (COVID-19) treated in intensive care unit are limited described. Therefore, we assessed patient's perception of their COVID-19 disease, stay in intensive care, and remaining symptoms three to six months after intensive care. METHODS: Prospective cohort study was performed in one intensive care unit of a university hospital in Sweden during the first wave. A questionnaire with open-ended questions and closed-ended questions was used. Data were analyzed using qualitative and quantitative content analysis and descriptive statistics. RESULTS: Out of 123 patients treated for COVID-19, 64 answered the questionnaire 3-6 months after discharge from intensive care. Memories from illness and hospital stay revealed in three categories; awareness of the illness, losing anchor to reality and being cared for in a dynamic environment. Information was perceived as spare by 48% and they wanted the information to be more personal. The diary was perceived as personal and was received by 33% patients. The relationship with family was affected among 39% and 13% of the patients indicated that they had not resumed their daily life. A large amount, 84%, indicated that they had remaining symptoms from COVID-19. The dominated symptoms were impaired strength and energy both physically and mentally. CONCLUSION: Patients reported a variety of physical and mental symptoms, and revealed memories from the ICU, and specific awareness of other patients' health. It illustrates the need for screening patients for remaining symptoms after COVID-19 disease and ICU care and may affect resuming patients' daily life.

Validation of the translated version of the EVAN-G scale in a Chinese-speaking population.

BACKGROUND: This study aimed to translate the French version of a perioperative satisfaction questionnaire (EVAN-G) scale, a validated questionnaire for assessing perioperative patient satisfaction, into a Chinese version and validate it in Chinese-speaking patients. METHODS: We developed the Chinese version of the EVAN-G (EVAN-GC) scale based on the original French version of the EVAN-G. The EVAN-GC scale, the Short version of the Spielberger State-Trait Anxiety Inventory (S-STAI), and the McGill pain questionnaire (MGPQ) were administered on the WeChat mini program. We invited patients to complete these questionnaires within 4 to 24 h after surgery. The psychometric validation of the EVAN-GC scale included validity, reliability, and acceptability. RESULTS: Among 220 patients, 217 (98.6%) completed the EVAN-GC scale after surgery. The item-internal consistency revealed good construct validity. Compared with the total scores of the S-STAI and MGPQ, the EVAN-GC scale showed excellent convergent validity (ρ = - 0.32, P < 0.001; ρ = - 0.29, P < 0.001). The EVAN-GC scale could differentiate between groups, which showed good discriminate validity. The Cronbach's alpha coefficient (0.85) of the translated scale demonstrated satisfactory internal consistency reliability, and a 36-patient subsample retest evidenced good test-retest reliability (ρ = 0.82, P < 0.001). In addition, the median [interquartile range] time of completing the EVAN-GC scale was 3.7 [2.9-4.9] min. CONCLUSIONS: The EVAN-GC scale has good psychometric properties similar to those of the original French version. The EVAN-GC scale is a valid and reliable measurement to assess patient satisfaction in Chinese-speaking patients. TRIAL REGISTRATION: The Chinese Clinical Trial Registry, ChiCTR2100049555.

Linguistic validation of a widely used recovery score: quality of recovery-15 (QoR-15).

BACKGROUND: The quality of recovery-15 (QoR-15) is a patient reported outcome questionnaire that measures the quality of recovery after surgery and anesthesia. The QoR-15 has been validated in many languages; Turkish version of the QoR-15 has not yet been established. The aims of this study were to translate the QoR-15 questionnaire into Turkish and to perform a full psychometric evaluation of the Turkish version. METHODS: After translating the original English version of the QoR-15 scale into Turkish, the QoR-15T scale was psychometrically validated. This process included validity, reliability, responsiveness, feasibility. The QoR-15T was evaluated before the surgery and 24 h after surgery. RESULTS: A total of 210 patients completed the pre- and postoperative questionnaires, providing a completion rate of 93.75%. The correlation coefficient between QoR-15T score and VAS score was 0.644 on postoperative day 1 (p < 0.001). Inter item Cronbach's alpha was 0.863. Global test-retest concordance coefficient was 0.98 (95% CI: 0.94-1.00). DISCUSSION: The QoR-15T scale is a reliable and valid instrument for evaluating postoperative quality of recovery in Turkish speaking patients. The psychometric characteristics used to assess postoperative quality of recovery were similar to those in the English version.

A qualitative study on professionals' attitudes and views towards the introduction of patient reported measures into public maternity care pathway.

BACKGROUND: The importance and potential benefits of introducing patient reported measures (PRMs) into health care service have been widely acknowledged, yet the experience regarding their implementation into practice is limited. There is a considerable paucity of research in adopting PRMs in maternity care routine. This study, which utilizes the PRMs included in Pregnancy and Childbirth (PCB) outcome set developed by International Consortium for Health Outcomes Measurement (ICHOM) as sample measures, aims to elicit Finnish professionals' views on PRMs and to explore the applicability of PRMs in Finnish public maternity care. METHODS: This qualitative study, applying semi-structured interviews, described the local professionals' views towards the application of PRMs in Finnish public maternity care. Professionals were asked to assess the PRMs defined in ICHOM PCB set and provide their expectations and concerns on the implementation of PRMs in Finnish public maternity service. RESULTS: Twenty professionals participated in the interviews. Participants agreed on the importance and relevance of the PRMs questions included in ICHOM PCB set for delivering and developing maternity care in Finland. However, they criticized the number and length of questions as well as the recommended time points of data collection. In addition, for a successful implementation, various steps like developing suitable questions, redesigning service pathway and protocols, and motivating women to respond to PRMs questions were considered to be important. Also, some potential obstacles, difficulties and risks associated with the implementation were underlined. CONCLUSION: This study indicates that the implementation of PRMs into Finnish public maternity service is possible, highly relevant and important. However, the adoption of PRMs into routine practice may be challenging and will require a series of efforts. This study shows viewpoints from Finnish professionals who have not participated in developing the ICHOM PCB standard set and provides important insights on the development and implementation of PRMs.

Validation of the translated Quality of Recovery-15 questionnaire in a French-speaking population.

BACKGROUND: Quality of recovery is an important component of perioperative health status. The 15-item Quality of Recovery (QoR-15) scale is a validated multidimensional questionnaire that measures postoperative quality of recovery. The aim of this study was to translate and assess the psychometric properties of a French version of the QoR-15 scale (QoR-15F) to measure postoperative recovery in French-speaking patients. METHODS: After translation into French of the original English version of the QoR-15 scale, psychometric validation of the QoR-15F scale to measure postoperative quality of recovery was performed. This psychometric validation included validity, reliability, responsiveness, and feasibility. The QoR-15F scale was administered before operation and on Postoperative day 1 in French-speaking patients. Patient-perceived global recovery assessment was measured at Postoperative day 1 using a VAS. RESULTS: We enrolled 150 patients, and 144 completed the study protocol. The completion rate of administered questionnaires was 100%. Pearson (r) correlation between postoperative QoR-15F and the global recovery assessment by the patient was 0.60 (P<0.0001). As expected, there was a significant negative correlation between QoR-15F score and duration of surgery (r=-0.29; P<0.01), duration of PACU stay (r=-0.21; P=0.01), and duration of hospital stay (r=-0.34; P<0.01). Cronbach's alpha was 0.81, split-half alpha was 0.83, and the global test-retest intra-class coefficient was 0.98 (0.95-0.99). CONCLUSIONS: The QoR-15F is a valid and reliable tool to measure postoperative quality of recovery in French-speaking patients. The psychometric properties to measure postoperative quality of recovery were similar to the seminal English version. CLINICAL TRIAL REGISTRATION: NCT03578068.

Patient-reported measures of well-being in older multiple myeloma patients: use of secondary data source.

BACKGROUND: Changes in well-being of patients with multiple myeloma (MM) before and after diagnosis have not been quantified. AIMS: Explore the use of secondary data to examine the changes in the well-being of older patients with MM. METHODS: We used the Health and Retirement Study (HRS), linked to Medicare claims to identify older MM patients. We compared patient-reported measures (PRM), including physical impairment, sensory impairment, and patient experience (significant pain, self-rated health, depression) in the interviews before and after MM diagnosis using McNemar's test. We propensity-matched each MM patient to five HRS participants without MM diagnosis based on baseline characteristics. We compared the change in PRM between the MM patients and their matches. RESULTS: We identified 92 HRS patients with MM diagnosis (mean age = 74.6, SD = 8.4). Among the surviving patients, there was a decline in well-being across most measures, including ADL difficulty (23% to 40%, p value = 0.016), poor or fair self-rated health (38% to 61%, p value = 0.004), and depression (15% to 30%, p value = 0.021). Surviving patients reported worse health than participants without MM across most measures, including ADL difficulty (40% vs. 27%, p value = 0.04), significant pain (38% vs. 22%, p value = 0.01), and depression (29% vs. 11%, p value = 0.003). DISCUSSION: Secondary data were used to identify patients with MM diagnosis, and examine changes across multiple measures of well-being. MM diagnosis negatively affects several aspects of patients' well-being, and these declines are larger than those experienced by similar participants without MM. CONCLUSION: The results of this study are valuable addition to understanding the experience of patients with MM, despite several data limitations.

Translation, cross-cultural adaptation, validation, and measurement properties of the Spanish version of the anterior cruciate ligament-return to sport after injury (ACL-RSI-Sp) scale.

PURPOSE: To translate into Spanish and validate the anterior cruciate ligament-return to sport after injury (ACL-RSI) scale, and to evaluate the psychological factors that have the greatest impact on the return to play among Spanish football players. METHODS: The ACL-RSI was first translated into Spanish by two teams of bilingual experts. At the time of discharge, 114 amateur and semi-professional football players who underwent ACL reconstruction answered a questionnaire regarding demographic and injury-related data, along with the translated ACL-RSI, the Knee Injury and Osteoarthritis Outcome Score (KOOS), the Tampa Scale for Kinesiophobia (TSK-11SV) and the injury-psychological readiness to return to sport (I-PRRS). Statistical analysis included reliability tests (Cronbach's alpha and test-retest), construct validity and exploratory factor analysis. RESULTS: The ACL-RSI-Sp showed excellent internal consistency (Cronbach's α = 0.9), temporal stability (test-retest r = 0.9) and significant moderate correlations with the KOOS subscales of symptoms (r = 0.4; p < 0.01), pain (r = 0.4; p < 0.01), daily life (r = 0.4; p < 0.01), "sport" (r = 0.5; p < 0.01) and quality of life (r = 0.6; p < 0.01). Significant moderate and strong correlations were also observed for the ACL-RSI-Sp with the TSK (r = - 0.5; p < 0.01) and the I-PRRS (r = 0.8; p < 0.01), respectively. Confidence in performance (1) and fear and insecurity (2) explained 62.6% of the total variance in ACL-RSI-Sp. CONCLUSIONS: The ACL-RSI-Sp was a valid and reliable instrument to evaluate the relevant psychological factors in the return to sports of Spanish football players after ACL reconstruction. Players' confidence in performance and fear and insecurity were the most important factors influencing the return to play in this population. LEVEL OF EVIDENCE: Level IV.

Cross-cultural adaptation and measurement properties of the Nepali version of the DASH (disability of arm, shoulder and hand) in patients with shoulder pain.

BACKGROUND: Patient-reported outcome measures (PROMs) are important tools in both clinical practice and research. However, no upper extremity PROM to assess physical disability is available in Nepali. The most commonly used and recommended questionnaire for the shoulder is the Disability of Arm, Shoulder and Hand (DASH). Therefore, the aim of the study was to translate and cross-culturally adapt the DASH into Nepali and determine its measurement properties. METHODS: The translation and cultural adaptation process followed international standard procedures. The translated Nepali version of the questionnaire (DASH-NP) was completed by 156 patients with shoulder pain from three Nepali hospitals at an initial assessment and by 121 at follow-up. A Nepali version of Global Rating of Change (GROC-NP) was completed at follow-up to dichotomise improved and stable participants. Measurement properties testing included: internal consistency (Cronbach's alpha), test-retest reliability (Intraclass Correlation Coefficient, ICC), Minimal Detectable Change (MDC), construct validity - factor analysis, hypothesis testing with the Shoulder Pain and Disability Index (SPADI) (Pearson Correlation = r) and responsiveness - Area Under the Curve with minimal important change. RESULTS: Significant adaptations such as changing measurement units, activities and terminology were incorporated to improve cultural relevance. Internal consistency (α = 0.92) and test-retest reliability (ICC = 0.97, 95% CI: 0.94-0.98, p < 0.001) were excellent. The MDC was 11 out of 100 points. There were moderate-high positive correlations with the SPADI pain and disability items (rs = 0.63 and 0.81, P < 0.001). Four factor solution was retrieved for the DASH-NP. The Area Under the Curve was 0.69 (95% CI: 0.57 - 0.81, p < 0.001) with minimal important change of 11.2/100 points. CONCLUSIONS: The Nepali translation of the DASH is comprehensible, easy to administer via self-report or interview. It is found to be a reliable, valid, and responsive measure in patients with shoulder pain in Nepal. The DASH-NP can be used to assess shoulder pain related disability in Nepal for clinical practice or research.

Patient-reported advantages and disadvantages of peritoneal dialysis: results from the PDOPPS.

BACKGROUND: Patient-reported measures are increasingly recognized as important predictors of clinical outcomes in peritoneal dialysis (PD). We sought to understand associations between patient-reported perceptions of the advantages and disadvantages of PD and clinical outcomes. METHODS: In this cohort study, 2760 PD patients in the Peritoneal Dialysis Outcomes and Practice Patterns Study (PDOPPS) completed a questionnaire on their PD experience, between 2014 and 2017. In this questionnaire, PDOPPS patients rated 17 aspects of their PD experience on a 5-category ordinal scale, with responses scored from - 2 (major disadvantage) to + 2 (major advantage). An advantage/disadvantage score (ADS) was computed for each patient by averaging their response scores. The ADS, along with each of these 17 aspects, were used as exposures. Outcomes included mortality, transition to hemodialysis (HD), patient-reported quality of life (QOL), and depression. Cox regression was used to estimate associations between ADS and mortality, transition to HD, and a composite of the two. Logistic regression with generalized estimating equations was used to estimate cross-sectional associations of ADS with QOL and depression. RESULTS: While 7% of PD patients had an ADS < 0 (negative perception of PD), 59% had an ADS between 0 and < 1 (positive perception), and 34% had an ADS ≥1 (very positive perception). Minimal association was observed between mortality and the ADS. Compared with a very positive perception, patients with a negative perception had a higher transition rate to HD (hazard ratio [HR] = 1.67; 95% confidence interval [CI]: 1.21, 2.30). Among individual items, "space taken up by PD supplies" was commonly rated as a disadvantage and had the strongest association with transition to HD (HR = 1.28; 95% CI 1.07, 1.53). Lower ADS was strongly associated with worse QOL rating and greater depressive symptoms. CONCLUSIONS: Although patients reported a generally favorable perception of PD, patient-reported disadvantages were associated with transition to HD, lower QOL, and depression. Strategies addressing these disadvantages, in particular reducing solution storage space, may improve patient outcomes and the experience of PD.

Can practitioners use patient reported measures to enhance person centred coordinated care in practice? A qualitative study.

BACKGROUND: To ascertain whether person centred coordinated care (P3C) is being delivered in healthcare services, components relating to the construct need to be measured. Patient reported measures (PRMs) can be used to provide a measurement of patients' experiences of P3C. Traditionally, they have been used to assess whether interventions are delivering P3C. Recently there has been an increased interest in using them to directly enhance P3C in clinical practice by, for example, improving practitioner-patient communication. However, there is limited research available on how P3C can be implemented in practice. This study aimed to extend this literature base by exploring how professionals use PRMs to enhance P3C. METHODS: Cross sectional thematic analysis of 26 semi-structured interviews with a variety of professionals who have experience of how PRMs can be used to make improvements to P3C. Inductive themes were mapped onto components of P3C care that fell under five established domains of P3C (Information and Communication; My Goals/Outcomes; Decision making; Care Planning and Transitions) to explore whether and how individual components of P3C were being improved through PRMs. Barriers and facilitators that affected the delivery and the results of the PRMs were also identified. RESULTS: Three P3C domains (Information and Communication, My Goals/Outcomes and Care Planning) were mapped frequently onto themes generated by the participants' interviews about PRM use. However, the domain 'Decision Making' was only mapped onto one theme and 'Transitions' was not mapped at all. Participant reports suggested that PRM use by practitioners enhanced patients' ability to self-manage, communicate, engage and reflect during consultations. Barriers to PRM use were related to a lack of a whole service approach to implementation. CONCLUSIONS: Practitioners use both PROMs and PREMs in various ways to improve different aspects of patient care. By sharing experiences professionals can benefit from each other's learning and work together to extend the potential value that PRMs can offer to P3C delivery.

Development of a care guidance index based on what matters to patients.

INTRODUCTION: Targeting resources for a designated higher-risk subgroup is a strategy for chronic care management. However, risk-designation has several limitations: it is inaccurate, seldom helpful for care guidance, and potentially misallocates care away from many patients. METHODS: To address limitations of risk designation, we tested a "what matters index" (WMI) in 19,593 adult patients with chronic conditions. The WMI contains five binary measures: insufficient confidence to manage health problems, level of pain, emotional problems, polypharmacy, and adverse medication effects. We examined its sum for association with patient-reported quality of life and prior emergency or hospital use. We compared its accuracy to a prototypic risk-designation model. RESULTS: The WMI was a good indicator for quality of life and in three diverse test populations it was strongly associated with the use of hospital and emergency services. For example, a sum of WMI ≥2 was associated with twice as many average uses as none; for ≥3, uses were three times higher. However, since relatively few patients use costly care, both the WMI and a prototypic risk-designation model had comparably low-positive predictive values. The WMI uses the patient voice to identify needs strongly associated with quality of life. Akin to risk designation models, the WMI can be used to place patients into groups associated with levels of costly services, but neither is likely to forecast costly service use for individuals. However, unlike risk-designation models, the WMI is based on measures that will immediately guide care for every patient.