Self-administered Patient Questionnaire Research Articles

Correlation between electrodiagnostic severity and Boston carpal tunnel questionnaire in surgically treated carpal tunnel syndrome patients.

The objectives of this study were to (1) investigate whether electrodiagnostic (EDX) findings reflect the preoperative symptom severity and functional impairment in patients with carpal tunnel syndrome (CTS) and (2) evaluate the relationship between EDX findings and the clinical outcomes reported according to the self-administered patient questionnaires. Patients diagnosed with idiopathic CTS who underwent carpal tunnel release between May 2016 and July 2018 were included. Carpal tunnel syndrome was clinically diagnosed and confirmed based on the EDX findings. The association between EDX findings, such as motor latency, motor amplitude, sensory latency, sensory amplitude, and severity (mild, moderate, and severe), and the Boston symptom and function scores were analyzed. The change in the Boston symptom and function scores from the preoperative baseline values (visit 1) to those recorded 1 year postoperatively (visit 5) was assessed. The effect of disease severity based on the EDX findings on the change in Boston symptom and function scores by visit was also investigated. The EDX severity, motor latency, motor amplitude, sensory latency, and sensory amplitude were not correlated with the Boston symptom and function scores preoperatively and postoperatively. Electrodiagnostic severity did not affect the improvement in the Boston symptom and function scores recorded at each visit. We found no association between the EDX severity and perioperative Boston questionnaire scores, and the degree of improvement in patient symptoms and function did not differ according to the CTS severity based on the EDX findings. Level IV, Prognostic study.

Evaluation of a "smart" screening tool for asynchronous assessment of medication abortion eligibility: A pilot study

ObjectivesThis study aimed to assess the feasibility, safety, and acceptability of asynchronous screening for medication abortion eligibility using a programmed questionnaire. Study designFor this study, we developed an informational website about medication abortion with a linked questionnaire programmed to produce a conclusion regarding eligibility according to standard criteria. We enrolled people in Colorado and Minnesota who submitted questionnaires indicating eligibility. A study physician reviewed each questionnaire and medical records if available and determined whether the responses warranted treatment without a synchronous clinical consultation or ultrasound. If so, the physician prescribed a standard regimen of mifepristone and misoprostol. We collected posttreatment data on abortion outcome, adverse events, and satisfaction. ResultsWe received questionnaires from 197 individuals, of whom 160 remained in the study until the physician made a final treatment decision. Physicians prescribed medication abortion to 156 (97.5%) individuals based on the questionnaire responses, whereas four needed further assessment to confirm eligibility. Of the 156 individuals, 130 had sufficient follow-up to assess abortion outcome, and 123 (95%) had complete medication abortions without additional treatment. One participant was hospitalized for bleeding, and one expelled a 15-week fetus; however, it is not clear that conventional synchronous history-based screening would have averted these events. Of the 197 questionnaires, 42% were submitted outside business hours. On satisfaction questionnaires, 134 (96%) of 144 participants said they would recommend the study to a friend who needed an abortion. ConclusionsData from this pilot project suggest that providing medication abortion based only on a self-administered, programmed questionnaire is likely to be effective, safe, efficient, and acceptable. ImplicationsA programmed self-administered patient questionnaire to assess eligibility for medication abortion could reduce the cost of the service, augment clinic efficiency, improve quality of care, and enhance access to abortion.

Security and performance of remote patient monitoring for chronic heart failure with Satelia® Cardio: First results from real-world use

Background: Since 2019, remote patient monitoring (RPM) for patients with chronic heart failure (CHF) has been supported by the European Society of Cardiology. However, real-world data on the use of such solutions has been limited and not primarily based on patient-reported outcomes. The aim of this study was to describe the Satelia® Cardio solution in France within the French ETAPES funding program and assess the security and performance of its clinical algorithm. Methods: A retrospective observational study was conducted on CHF patients monitored by RPM through Satelia® Cardio. From September 1, 2018, to June 30, 2020, patients were included if they had completed over six months of follow-up. The risk of a possible CHF decompensation was categorized by the system in three levels: green, orange and red. The algorithm security and performance were assessed through the negative predictive value (NPV) of the prediction of hospitalization of a patient within seven days. Results: In total, 331 patients were included in this study with 36,682 patient self-administered questionnaires answered. Patients were mostly males (70.4%) and had a mean age of 68.1 years. The mean left ventricular ejection fraction (LVEF) was 35.4% (± 12.3) and 73.3% of patients had a LVEF ≤ 40%. The questionnaire response rate was 90.9%. A green status was generated for 95.3% of answers. There were 4.5% (n = 1,499) orange alerts and 0.2% (n = 74) red alerts. Overall, 92.1% of patients had at least one CHF related hospitalization and 31.7% (n = 105) of these cases were non-scheduled. The NPV at seven days was 99.43%. Conclusion: Satelia® Cardio is a feasible, relevant and reliable solution to safely monitor the cohorts of patients with CHF, reassuring cardiologists about patient stability.

Long-term quality of life and functional outcomes in adults surgically treated for intramedullary spinal cord tumor.

Intramedullary spinal cord tumors (IMSCTs) are rare but clinically significant entities that may cause severe neurological decline with progressive pain and motor or sensory deterioration. Beyond the beneficial effects of surgical treatment and the long-term progression-free survival, neurological deficits may still persist after surgery, and information about the long-term patients' health-related quality of life (QoL) is still lacking. In this study, we investigate the patients' health perception 15 years after the surgery in an overall patients' wellbeing framework. Patients surgically treated for IMSCT over a period from 1996 to 2011 were selected. After a mean of 15 years from the surgery, patient's self-administered questionnaire on disability, pain, sleep quality, and QoL was collected and neurological postoperative evaluation at the chronic stage was reexamined. Neurological deficits are reported in half of the patients in the postoperative chronic phase. After 15 years of surgery, half of the patients still report mild or severe disability grades associated with significantly higher pain and poor sleep and QoL. In accordance, the neurological condition measured at the chronic stage is significantly related not only to disease-specific symptoms (i.e., pain) but even to sleep quality complaints and poor QoL, measured at 15 years follow-up. Health-related QoL is an important secondary outcome in patients. Although the progression-free survival, worse postoperative neurological conditions could predict long-term sequelae reflecting patients' poor health perception. It suggests the importance of preserving patients' functional status and globally evaluating patients' wellbeing to handle disease-specific symptoms but even more general aspects of QoL.

Long-term analysis of chronic pain associated with lower extremity injuries

IntroductionThe main objective of this study is to examine chronic pain and limping in relation to lower extremity and pelvic fracture location in addition to fracture combinations if multiple fractures are present on the same leg that have not been previously reported. We hypothesize that fracture pattern and location of lower extremity and pelvis fractures of multiple injured patients influence their long-term pain outcome.Materials and methodsRetrospective cohort study. Patients with treated multiple lower limb and pelvic fractures at a level 1 trauma center and followed up for at least 10 years postinjury were assessed. Lower leg pain subdivided into persistent, load-dependent and intermittent pain, as well as limping were recorded by using self-administered patient questionnaires and standardized physical examinations performed by a trauma surgeon. Descriptive statistics were used to present comparative measurements between groups.ResultsFifty-seven percent of patients (n = 301) showed chronic lower limb pain 10 years postinjury. Ten percent of all patients with chronic pain displayed persistent pain, and here the most common fracture combination was tibial shaft fractures in combination with femoral shaft or proximal tibial fractures (13%). One hundred fifty-one patients reported load-dependent pain, with the most common fracture combinations being fractures of the foot in combination with femoral shaft fractures or distal tibial fractures (11%). One hundred twenty patients reported intermittent pain, with the most common fracture combinations involving the shaft of the tibia with either the femoral shaft or distal tibia (9%). Two hundred fifteen patients showed a persistent limp, and here the most common fractures were fractures of the femoral shaft (19%), tibial shaft (17%), and pelvis (15%).ConclusionsIn multiple injured patients with lower extremity injuries, the combination of fractures and their location are critical factors in long-term outcome. Patients with chronic persistent or load-dependent pain often had underlying femoral shaft fractures in combination with joint fractures.

Correlation between self-reported and questioned Epworth sleepiness scale results including polysomographic outcomes

IntroductionObstructive sleep apnea (OSA) is characterized by a recurrent complete or partial obstruction in the upper airways accompanied by desaturation attacks and recurrent awakenings (arousal) during sleep and is associated with excessive sleepiness and poor quality of life. Excessive daytime sleepiness (EDS) has long been recognized as the most important symptom of OSA and Epworth sleepiness scale (ESS) is a simple, easy-to-understand, self-reported, validated scale used in the evaluation of patients with obstructive sleep apnea syndrome (OSAS).ObjectiveSome researchers have reported that ESS has controversial results in evaluating OSAS due to the fact that it is based on self-reporting. It is known that ESS is a self-administered patient questionnaire, but it can also be administered by the doctor, and the information about the latter’s validity, reliability, and correlation with OSAS is limited. This study was conducted to compare the outcomes of ESS self-administered by the patient and administered by a doctor in patients with OSAS.MethodsNinety-three patients with OSAS symptoms, with polysomnography test results, and who were presented in a tertiary hospital in 2019 for snoring and apnea problems were included in this study. ESS, consisting of eight questions and used to measure daytime sleepiness in various situations on the basis of self-reporting, was used. Subsequently, ESS was repeated, but this time verbally administered by the doctor to the patient. ESS is a 4-point Likert-type scale scored with 0, 1, 2, and 3. Excessive daytime sleepiness is accepted in individuals with a total score of 11 or more. The data were analyzed using the Statistical Package for the Social Sciences (SPSS) program.ResultsOf the patients who participated in this study, 57% (n = 53) were male and 43% (n = 40) were female. The average age of the patients was 48.1±9.71. The body mass index (BMI) average was 29.7±5.66 kg/m2, and the average neck circumference was 38.6±4.62 cm. The mean value of the completed ESS self-administered by the patient (ESSp) was calculated as 11.0±5.25 and that of the ESS administered by the doctor (ESSd) was 7.9±4.76. For the results, while daytime sleepiness was 35.5% in ESSd, it was 52.7% in ESSp. A positive correlation was found between the ESSd and ESSp values and BMI. A positive correlation was also found between the apnea-hypopnea index (AHI) and BMI.ConclusionsThe ESS administered by a doctor will yield more accurate data about the severity of OSAS than the ESS self-administered by the patient.

‘Guess who’? An Italian multicentric study on pigmentation traits prevalence in endometriosis localizations

ObjectivesPrevious evidence seems to support the more common presence of certain pigmentation types in women with endometriosis. The aim of this study was to assess the association of certain somatic phenotypes with specific localizations of the disease. The genetic makeup of those somatic traits may will help in better define the disease pathogenesis. Study designMulticentric, retrospective study of women aged 18 to 45 with histologically confirmed endometriosis. 575 patients were recruited at eleven different Italian endometriosis clinics from March 2015 to January 2021. Data regarding clinical and surgical features were recorded following the self-administered endometriosis patient questionnaire and the surgical standard of reports approved by the World Endometriosis Research Foundation (WERF). Pigmentation types/somatic phenotypes frequencies among endometriosis localizations were reported. A logistic regression analysis was performed to determine somatic types independently associated with disease’ localizations. ResultsHaving green eyes increased by ∼4 folds (OR 3.7; 95% CI: 1.42–9.61; p = 0.007) the risk of having a ureteral nodule, whereas brown/black eyes decreased this risk (OR 0.34; 95% CI: 0.13–0.87; p = 0.025). Consistently, the combination of green eyes and blonde/light brown hairs increased the odds of ureteral endometriosis by more than 5 folds (OR 5.40; 95%CI: 2.02–14.49; p = 0.001), even after correction for anthropometric confounders (aOR 5.85; 95% CI: 2.13–16.09; p < 0.001). ConclusionsThe association between endometriosis and pigmentary traits has been herein confirmed, with the novel finding of the possible predisposition of ureteral endometriosis in patients with green eyes and blonde/light brown hairs. Further investigation on the genetic makeup of somatic traits may provide new inroads also into the molecular aspects of endometriosis leading to a better understanding of this complex disease.

MO476: Prevalence of Symptoms in End Stage Renal Disease and Their Association With Quality of Life

Abstract BACKGROUND AND AIMS End-stage chronic renal disease (ESRD) is an irreversible disease with serious consequences for the life of the patient and perceived as a social and professional handicap. Management of ESRD therefore requires not only control of symptoms and morbidity, but also improvement in the quality of life (QoL) of these patients. Due to its wide variety of symptoms as well as the cost/dialysis patient, ESRD is one of the most expensive pathologies in the world, making it the subject of several studies. The aim of this study was to study the prevalence and influence of symptoms on the physical and mental components of the QoL in patients with ESRD, both in those on pre-dialysis as well as in those already at the stage of hemodialysis. METHOD This is a cross-sectional observational study carried out between January and April 2021. This multicenter study concerned a cohort of 245 patients with end-stage chronic renal failure on dialysis or on pre-dialysis. Upon entry into the study, a set of 17 symptoms was collected by patient interview or by patient self-administered questionnaire. Patients’ QOL was assessed using the physical (PCS) and mental (MCS) summary components of the `Kidney Disease Quality of Life Short Form’ (KDQoL SF-36). Single and multiple logistic and linear regression analyzes were used to compare symptoms and their impact on QoL between predialysis and dialysis. A P-value &amp;lt; .05 in a confidence interval &amp;gt;95% is considered statistically significant. RESULTS Among the 245 patients included, 102 were on pre-dialysis and 143 were in the hemodialysis stage. The mean age of all of our patients was 54.21 ± 11.07 years old with extremes of 19–81 years old and predominantly male (63%). Causal nephropathy was undetermined in 53% of cases; 44% of our patients had hypertension under treatment, and 38% were diabetic. The most common symptoms are sleep disorders (71%), anorexia (48%), muscle pain (26%), weight loss (26%), loss of autonomy and chest pain (21%), asthenia and then libido disorders (20%). Among our patients, 46% still had residual kidney function. Only cramps and fatigue were significantly associated with a decline in kidney function. Symptoms such as asthenia, sleep disturbances, along with restless legs syndrome and pruritus were significantly different in the two groups, being more common in dialysis patients. In univariate analysis, the comparative study of the different components of the score found a statistically significant association between the mental component of the scoring and the age, the female sex, the feeling of burden in relation to the family, the quality of dialysis (Kt/V) and pruritus. In contrast, the duration of kidney disease, loss of residual kidney function and anemia were associated with increased kidney disease burden and physical component. In multivariate analysis, the presence of cardiovascular disease increased the risk of clinically poor QoL, and age &amp;gt;60 years increased the risk of having poor QoL. On the contrary, having the ability to do the work at home as well as a good relationship with caregivers are factors of good QoL mentally, and seniority in HD &amp;gt; 5 years had a positive impact on physical QoL. CONCLUSION The QoL during ESRD is a complex notion that results from an interaction of several components: the disease itself, the patient's psychological traits, the patient's behavior in the face of his illness and social support. Despite this complexity, it must be considered as a criterion for evaluating the means of substitution offered in IRCT. Finally, the QoL after kidney transplant remains much higher than that offered by dialysis despite the risk of complications related to immunosuppressants.

Pain Perception Before Endodontic Treatment: from Primary Care to Specialized Care

Objective: To analyze patients’ pain perception requiring endodontic treatment referred to a Dental Specialties Center. Material and Methods: Data was collected through a self-administered questionnaire for patients about their experience of pain and another for endodontists about the treatment performed. The results were analyzed descriptively using Pearson’s Chi-square test and Fisher’s Exact test, with Bonferroni correction (p≤0.05). Results: The median age of the patients was 39 years, and 71.1% were female. The median waiting time for treatment was five months. Pain was reported by 75.2% of patients, occurred more than one month earlier (63.6%), with moderate/severe intensity (66.9%), and most patients sought emergency treatment more than once (79.1%). In addition, pain was associated with sex (female; p=0.008); moderate/severe intensity (p<0.001); the number of times that patient had to go to the dentist because of the tooth treatment (twice or more; p=0.002); and type of tooth treated (posterior tooth; p=0.002). Conclusion: Severe pain episodes resulted in a repeated search for emergency services, which may overload the primary care service, especially if the waiting time for endodontic treatment is long.

Clinical impact of guideline-based practice and patients\u2019 adherence in uncontrolled hypertension

BackgroundChronic diseases like hypertension need comprehensive lifetime management. This study assessed clinical and patient-reported outcomes and compared them by treatment patterns and adherence at 6 months among uncontrolled hypertensive patients in Korea.MethodsThis prospective, observational study was conducted at 16 major hospitals where uncontrolled hypertensive patients receiving anti-hypertension medications (systolic blood pressure ≥ 140 mmHg or diastolic blood pressure ≥ 90 mmHg) were enrolled during 2015 to 2016 and studied for the following 6 months. A review of medical records was performed to collect data on treatment patterns to determine the presence of guideline-based practice (GBP). GBP was defined as: (1) maximize first medication before adding second or (2) add second medication before reaching maximum dose of first medication. Patient self-administered questionnaires were utilized to examine medication adherence, treatment satisfaction and quality of life (QoL).ResultsA total of 600 patients were included in the study. Overall, 23% of patients were treated based on GBP at 3 months, and the GBP rate increased to 61.4% at 6 months. At baseline and 6 months, 36.7 and 49.2% of patients, respectively, were medication adherent. The proportion of blood pressure-controlled patients reached 65.5% at 6 months. A higher blood pressure control rate was present in patients who were on GBP and also showed adherence than those on GBP, but not adherent, or non-GBP patients (76.8% vs. 70.9% vs. 54.2%, P < 0.001). The same outcomes were found for treatment satisfaction and QoL (P < 0.05).ConclusionsThis study demonstrated the importance of physicians’ compliance with GBP and patients’ adherence to hypertensive medications. GBP compliance and medication adherence should be taken into account when setting therapeutic strategies for better outcomes in uncontrolled hypertensive patients.

How international is the International Prostate Symptom Score? A literature review of validated translations of the IPSS, the most widely used self-administered patient questionnaire for male lower urinary tract symptoms.

The International Prostate Symptom Score (IPSS) approaches its 30th anniversary. This ubiquitous clinical assessment tool is a standard in the assessment and research of lower urinary tract symptoms in men. The authors explore its history, development, and subsequent dissemination through validated translations across the world. An estimated global coverage is calculated and mapped according to language population. Embase and Medline literature searches were performed, with further hand searches of grey literature and online resources. Twenty-two abstracts and journal articles validating language translations of the IPSS were reviewed in full and tabulated. Language population data were gathered from an official database and mapped. The IPSS is available in 53 languages. Twenty-seven languages have statistically or clinically validated translations for use in male patients. This corresponds to a conservative estimate of global population coverage of approximately 2.3 billion men, or 60% of the worldwide male population. Translation methodology involves forward and back translation. Statistical validation is performed with control patients. Cronbach's alpha is used for internal consistency, and Spearman's coefficient (p) or Pearson's coefficient (r) for test-retest reliability. Issues such as the emergence of altered versions deviating from original validated translations and translation difficulties due to cultural differences are observed. Further translational work is needed to validate versions of the IPSS in languages of the developing world. The IPSS is the most prevalent patient-administered questionnaire used in urology across the world. There is no other clinical tool seen to have similar coverage. This paper aims to provide a roadmap for future clinical tools to acquire a similar level of translation and dissemination.

Exploring the Constituent Elements of a Successful Mobile Health Intervention for Prediabetic Patients in King Saud University Medical City Hospitals in Saudi Arabia: Cross-sectional Study.

BackgroundSelf-management of prediabetic patients is crucial since they are at high risk of developing type 2 diabetes. Mobile health (mHealth) apps could contribute to potentially reducing the burden of diabetes by supporting the self-management of prediabetic patients.ObjectiveThis study aimed to explore the constituent elements of a successful mHealth intervention for prediabetic patients in King Saud University Medical City (KSUMC) hospitals in Saudi Arabia using the Centre for eHealth Research (CeHRes) roadmap.MethodsThis study used the CeHRes roadmap as a developmental guideline for proposing mHealth app features for self-management of prediabetic patients and was performed in 3 phases with one round in each phase. First, a contextual inquiry was conducted via an online self-administered questionnaire for both health care providers and patients. Second, the value specification phase elaborated on the outcomes from the contextual inquiry phase. Finally, prototype user design was performed in cocreation with end users. The design phase was also conducted via an online self-administered questionnaire to evaluate the proposed features of mHealth apps by prediabetic patients.ResultsA total of 20 health care providers participated in the study. The results revealed that the most powerful intervention for prediabetes was a combination of medication, physical activity, and healthy diet plans (12/20, 60%). Furthermore, the most common challenge faced by prediabetes patients was patient adherence to healthy diet and physical activity recommendations (10/20, 50%). Almost all patients believed that mHealth apps would be useful for prediabetic patients. A total of 48 prediabetic patients participated in the study. The results indicated that the most powerful intervention for prediabetic patients is a combination of healthy diet and physical activity plans (21/48, 44%), and the most frequent challenge that may lead the patients to discontinue the current intervention was the commitment to a physical activity plan (35/48, 75%). Furthermore, 15% (17/48) of patients use well-being and health apps to manage their current health status. The most common difficulties faced by the patients were navigating app features (mean 2.02 [SD 1.7]) followed by the app language (mean 1.88 [SD 2.0]); these difficulties occurred at a significantly higher rate among those with secondary or lower educational levels as compared to undergraduate and postgraduate levels (P<.05). Finally, the features proposed in the prototype design scored more than 2.5 points higher and indicate the need for these features to be included in the mHealth app.ConclusionsThis study aimed to provide real-world insights into the development of an mHealth app for a diabetes prevention intervention by involving both health care providers and prediabetic patients in KSUMC hospitals. Therefore, the proposed app, which comprises all necessary features, may aid patients with prediabetes in self-management and making changes in their lifestyle.

The Multifocal Approach to Sharing in Shared Decision Making: A Critical Appraisal of the MAPPIN'SDM.

Shared decision making integrates health care provider expertise with patient values and preferences. The MAPPIN'SDM is a recently developed measurement instrument that incorporates physician, patient, and observer perspectives during medical consultations. This review sought to critically appraise the development, sensibility, reliability, and validity of the MAPPIN'SDM and to determine in which settings it has been used. This critical appraisal was performed through a targeted review of the literature. Articles outlining the development or measurement property assessment of the MAPPIN'SDM or that used the instrument for predictor or outcome purposes were identified. Thirteen studies were included. The MAPPIN'SDM was developed by both adapting and building on previous shared decision making measurement instruments, as well as through creation of novel items. Content validity, face validity, and item quality of the MAPPIN'SDM are adequate. Internal consistency ranged from 0.91 to 0.94 and agreement statistics from 0.41 to 0.92. The MAPPIN'SDM has been evaluated in several populations and settings, ranging from chronic disease to acute oncological settings. Limitations include high reading levels required for self-administered patient questionnaires and the small number of studies that have employed the instrument to date. The MAPPIN'SDM generally shows adequate development, sensibility, reliability, and validity in preliminary testing and holds promise for shared decision making research integrating multiple perspectives. Further research is needed to develop its use in other patient populations and to assess patient understanding of complex item wording.

Palliative Integration Into Ambulatory Oncology: An Advance Care Planning Quality Improvement Project

Advance care planning (ACP) is essential to ensuring that patient-centered end-of-life goals are respected if a health crisis occurs. Advanced practitioner barriers to ACP include insufficient time and limited confidence in discussions. The purpose of this quality improvement project was to increase advanced cancer patients’ electronic health record (EHR) documented surrogate decision maker and ACP documentation by 25% over 8 weeks. A secondary aim was to decrease patients’ decisional conflict scores (DCS) related to life-sustaining treatment preferences after a clinical nurse specialist (CNS)-led ACP session. Using the define, measure, analyze, improve, and control (DMAIC) process of quality improvement methodology, an interprofessional team led by a palliative CNS fostered practice change by (a) incorporating a patient self-administered Supportive Care and Communication Questionnaire (SCCQ) to standardize the ACP assessment, (b) creating an EHR nursing and provider documentation template, (c) offering advanced cancer patients a palliative CNS consultation for ACP review and advance directive completion, and (d) evaluating patients’ DCS through the four-item SURE tool. Of 126 participants provided with the SCCQ, 90 completed the document, resulting in a 71% return rate. Among the completed SCCQs, 37% (n = 33) requested a CNS consultation, with 76% (n = 25) returning for the ACP session. The CNS intervention yielded an average reduction of 1.4 points in SURE tool findings, a statistically significant decrease determined by a paired sample t-test. The project’s interprofessional collaboration promoted a system-wide standardized ACP process throughout ambulatory, acute, and post-hospital settings.

Features Associated With Quality of Life Impairment in Hidradenitis Suppurativa Patients.

Background: Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease with an adverse impact on patients' quality of life (QoL).Objectives: To quantify QoL impairment in patients in Germany suffering from HS and to identify the parameters associated with QoL impairment.Methods: A non-interventional, cross-sectional, mono-centric study with 500 HS patients. QoL data (measured using the Dermatology Life Quality Index; DLQI) and demographic, anamnestic, clinical, and blood parameters were collected. All patients were examined by dermatologists that documented the skin alterations. QoL data from 462 HS patients were available and evaluated.Results: The mean (± standard deviation) DLQI score of HS patients was 13.18 ± 7.99. Approximately 40% and 20% of HS patients declared very large and extremely large QoL impairment, respectively. The degree of QoL disturbance correlated with the severity of skin alterations, blood leucocyte count and, in particular, with anogenital localization and the presence of nodules and fistulas. Furthermore, QoL impairment was associated with specific comorbidities, such as adiposity and back pain, but not with HS family history. QoL impairment was not influenced by whether or not the patients had undergone resection surgery or antibiotic treatment but was more severe in HS patients that had undergone abscess lancing compared to patients without such treatment in the past.Limitations: It was a mono-centric study and most data were obtained from self-administered patient questionnaires. The association of QoL with type of treatment was analyzed for abscess lancing, resection surgery, and antibiotic treatment. Further therapeutic modalities recommended in the guidelines were not investigated.Conclusion: A profound impairment in QoL was present in patients with HS, and this was higher than that observed in other studied dermatoses. The degree of impairment correlated with the extent of cutaneous and some extra-cutaneous alterations. Surgical and conventional medicamentous therapies of HS were not associated with long-lasting reduction of QoL impairment. Our data support the implementation of patient-reported outcome measures for the assessment of therapy responses.

Impact of acne on the daily life of adult patients: building a self-administered patient questionnaire.

Acne is a long-lasting disease in adolescents and adults impacting the patient's daily life. Currently, there is no specific questionnaire that assesses its impact in adult patients. To build a self-administered questionnaire assessing the impact of acne on the daily life in adult patients. A multidisciplinary working group was created, including 3 experts in healthcare questionnaires and dermatologists specialized in acne. A questionnaire using a standardized methodology for designing self-administered patient questionnaires according to conceptual, development and validation phases was developed. A cultural and linguistic validation into US English was conducted, based on the original French version. A 14-item questionnaire demonstrating consistency, reproducibility and high reliability was build. The questionnaire significantly correlated with the SF-12 mental and SF-12 physical scores and CADI, indicating good external validity. The present acne burden questionnaire AI-ADL allows the practioner to assess quickly and easily the burden of acne in patients during his daily clinical practice. Moreover, its short format allows patients to express easily and quickly their feelings and to initiate a conversation between the practioner and his patient. Thus, AI-ADL may help to better understand the multidimensional nature of acne, as well as the individual impact on the acne patient's daily life and moreover, it may play a key role in the decision-making process of treatment initiation and involvement of the patient in the management of his acne.

English version of the self-administered Fabry Pain Questionnaire for adult patients

BackgroundPain is an early symptom of Fabry disease (FD) and is characterized by a unique phenotype with mainly episodic acral and triggerable burning pain. Recently, we designed and validated the first pain questionnaire for adult FD patients in an interview and a self-administered version in German: the Würzburg Fabry Pain Questionnaire (FPQ). We now report the validation of the English version of the self-administered FPQ (enFPQ).MethodsAfter two forward–backward translations of the FPQ by native German and native English speakers, the enFPQ was applied at The Mark Holland Metabolic Unit, Manchester, UK for validation. Consecutive patients with genetically ascertained FD and current or previous FD pain underwent a face-to-face interview using the enFPQ. Two weeks later, patients filled in the self-administered enFPQ at home. The agreement between entries collected by supervised administration and self-administration of the enFPQ was assessed via Gwet’s AC1-statistics (AC1) for nominal-scaled scores and intraclass correlation coefficient (ICC) for interval-scaled elements.ResultsEighty-three FD patients underwent the face-to-face interview and 54 patients sent back a completed self-administered version of the enFPQ 2 weeks later. We found high agreement with a mean AC1-statistics of 0.725 for 55 items, and very high agreement with a mean ICC of 0.811 for 9 items.ConclusionsWe provide the validated English version of the FPQ for self-administration in adult FD patients. The enFPQ collects detailed information on the individual FD pain phenotype and thus builds a solid basis for better pain classification and treatment in patients with FD.

Evaluation of a pilot project to increase influenza vaccine coverage in patient with chronic diseases

Abstract Background Chronic diseases are a major risk factor for influenza morbidity and mortality. However, influenza vaccine coverage in people with chronic diseases remains low, around 43%, in Quebec, Canada. Various strategies are being tested to improve the vaccination rates for this population. A pilot project was implemented in a rheumatology outpatient clinic during the 2018-19 season to improve vaccination access in this often-immunosuppressed group of patients. All patients having an appointment at the clinic during the vaccination period were systematically invited to see the nurse and offered vaccination if they met the program criteria, namely if they were taking immunosuppressive drugs. Methods Implementation and results of the project were evaluated using mixed methods. Data on vaccination were collected from the nurses' forms and from a patient self-administered questionnaire. Data on implementation was collected through the patient questionnaire and semi-directed interviews with the clinic physicians, the clinic nurse and managers. Results A total of 1135 patients were evaluated by the nurses during the project and 427 completed the patient questionnaire. Total vaccination rate amongst patients seen by the nurses was 63%. Based on patient questionnaires results, vaccination was increased by 46%, as compared to the previous year (52% in 2017-18 vs 76% in 2018-19). The project was well received. Key elements of its success were integration in regular clinic activities, support for the initiative by patients and professionals and some logistic aspects such as preloaded syringes. Barriers were mostly related to excess workload and vaccine management. Conclusions Overall, the project improved vaccination coverage and was considered a success. Lessons learned were used to adjust and spread this initiative to more outpatient clinics using personnel dedicated for vaccination rather than using the clinic nurse. A phase II project was done and evaluated in 2019-2020. Key messages Increasing timely access to vaccination helps to increase influenza vaccine coverage. Managers should plan for the increased workload on clinical and clerical personnel when implementing systematic vaccination offer.

Data to be collected for an optimal management of axial spondyloarthritis in daily practice: Proposal from evidence-based and consensual approaches.

To propose a list of variables to be collected right after the diagnosis has been made and during the follow-up of patients with axial spondyloarthritis (ax-SpA) for an optimal management in daily practice. The process comprised (1) the evaluation of the interest of 51 variables proposed for the assessment of ax-SpA by means of a systematic literature research; (2) a consensus process involving 78 hospital-based or office-based rheumatologists, considering the collection of each variable in a 4 grade scale from "not very useful/useless" to "mandatory"; (3) a consensus on the minimum interval of time for periodic assessment of the selected variables on a 5 grade scale from "at each visit" to "never to be re-collected". The systematic literature research retrieved a total of 14,133 abstracts, of which 213 were included in the final qualitative synthesis. Data to be collected at the initial systematic review comprised 5 patient's self-administered questionnaires, 3 variables of the physician's interview, 2 variables of the physical examination, 2 variables of the specific ax-SpA imaging and 2 other investigations. Two variables were recommended to be systematically collected at each visit, 1 variable twice a year, 6 variables yearly and 1 variable every 2 years. Using an evidence-based and an expert consensus approaches, this initiative defined a core set of variables to be collected and reported right after the diagnosis and during follow-up of patients with ax-SpA in daily practice.

Readability of pelvic floor dysfunction questionnaires.

The National Institutes of Health and Center for Disease Control recommend the readability of self-administered patient questionnaires to be written at or below a sixth to eight grade reading level. The aim of this study is to evaluate the readability of commonly used urinary incontinence (UI), pelvic organ prolapse (POP), overactive bladder (OAB), and benign prostate hyperplasia (BPH) questionnaires. Eighteen validated urologic questionnaires were analyzed using four readability assessment tools. A mean grade-level needed to comprehend each questionnaire was calculated. For UI questionnaires, three out of five questionnaires required a reading level of 10th grade or higher, two grade levels above recommendations. Only one POP questionnaire met recommendations with a mean readability score of 5.9, whereas the other questionnaires required a ninth-grade reading level or higher. For the OAB questionnaires, three out of five questionnaires met reading recommendations. Readability scores for BPH questionnaires ranged from 6.4 to 11.2, with only the International Prostate Symptom Score questionnaire in compliance with recommendations. The majority of currently available pelvic floor dysfunction questionnaires do not comply with recommended reading levels, suggesting that these questionnaires are written at a level too advanced for a large proportion of the population. This limits their effectiveness in accurately assessing symptom severity and impact on quality of life.