Baseline Characteristics of a National French E-Cohort of Hidradenitis Suppurativa in ComPaRe and Comparison with Other Large Hidradenitis Suppurativa Cohorts

Dermatology ◽  
2021 ◽  
pp. 1-11
Author(s):  
Morgane Condamina ◽  
Laetitia Penso ◽  
Viet-Thi Tran ◽  
Claire Hotz ◽  
Philippe Guillem ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Hidradenitis Suppurativa ◽  
Real Life ◽  
Epidemiological Studies ◽  
Scientific Data ◽  
Disease Stage ◽  
Treatment History ◽  
Patient Reported ◽  
History Of

<b><i>Background:</i></b> Hidradenitis suppurativa (HS) is a chronic inflammatory skin condition substantially impacting patients’ quality of life; the pathogenesis remains unclear, and treatment is complex and not yet standardized. Observational data are increasingly being used to evaluate therapeutics in “real-life” interventions, and the development of e-cohorts is offering new tools for epidemiological studies at the population level. <b><i>Objective:</i></b> The aim of this study was to describe the clinical characteristics and treatment history of HS participants in the Community of Patients for Research (ComPaRe) cohort and to compare these to other cohorts. <b><i>Methods:</i></b> We performed a cross-sectional study of the baseline data of HS participants in ComPaRe, an e-cohort of patients with chronic diseases. Data were collected using patient-reported questionnaires about clinical-dem­ographic aspects, quality of life, and treatment history. <b><i>Results:</i></b> A total of 396 participants (339 females, 57 males) were included (mean age 38 years); 83 (21%) had a family history of HS, 227 (57.3%) were current smokers, and 241 (60.9%) were overweight or obese. Most of the participants declared a Hurley stage II (<i>n</i> = 263, 66.4%) or III (<i>n</i> = 76, 20.3%). The breast was more frequently affected in women than men (37.5 vs. 5.3%, <i>p</i> &#x3c; 0.0001), whereas the dorsal region was more frequently affected in men (39.5 vs. 10.9%, <i>p</i> &#x3c; 0.0001). Increased disease stage was associated with obesity (25.9 vs. 33.8 vs. 51.3%, <i>p</i> = 0.02) and some HS localizations (genital [<i>p</i> &#x3c; 0.005], pubis [<i>p</i> &#x3c; 0.007], gluteal fold [<i>p</i> = 0.02], and groin [<i>p</i> &#x3c; 0.0001]). The most frequently prescribed treatments were oral antibiotics (<i>n</i> = 362, 91.4%), especially amoxicillin-clavulanic acid and cyclins. Less than 10% of participants received biologics. Most of these results were consistent with previously published cohorts. <b><i>Conclusion:</i></b> Recruitment of participants by such a web platform can be a faster way to get relevant scientific data for a wide variety of patients that could be used for epidemiological studies and to evaluate therapeutics in “real-life” interventions.

Patients With a History of Oronasal Fistula Repair Exhibit Lower Oral Health Measured With Patient-Centric Outcomes Measures

2020 ◽  
pp. 105566562098133
Author(s):  
Alyssa Fritz ◽  
Diana S. Jodeh ◽  
Fatima Qamar ◽  
James J. Cray ◽  
S. Alex Rottgers
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
Cleft Palate ◽  
Fistula Repair ◽  
Old Patients ◽  
Oronasal Fistula ◽  
Patient Reported ◽  
History Of ◽  
The Impact

Introduction: Oronasal fistulae following palatoplasty may affect patients’ quality of life by impacting their ability to eat, speak, and maintain oral hygiene. We aimed to quantify the impact of previous oronasal fistula repair on patients’ quality of life using patient-reported outcome psychometric tools. Methods: A cross-sectional study of 8- to 9-year-old patients with cleft palate and/or lip was completed. Patients who had a cleft team clinic between September 2018 and August 2019 were recruited. Participants were divided into 2 groups (no fistula, prior fistula repair). Differences in the individual CLEFT-Q and Child Oral Health Impact Profile-Short Form 19 (COHIP-SF 19) Oral Health scores between the 2 groups were evaluated using a multivariate analysis controlling for Veau classification and syndromic diagnosis. Results: Sixty patients with a history of cleft palate were included. Forty-two (70%) patients had an associated cleft lip. Thirty-two (53.3%) patients had no history of fistula and 28 (46.7%) patients had undergone a fistula repair. CLEFT-Q Dental, Jaw, and Speech Function were all higher in patients without a history of a fistula repair; however, none of these differences were statistically significant. The COHIP-SF 19 Oral Health score demonstrated a significantly lower score in the fistula group, indicating poorer oral health ( P = .05). Conclusions: One would expect that successful repair of a fistula would result in improved function and patient satisfaction, but the consistent trend toward lower CLEFT-Q scores and significantly increased COHIP-SF 19 Oral Health scores in our study group suggests that residual effects linger and that the morbidity of a fistula may not be completely treated with a secondary correction.

scholarly journals Patient-Reported Outcomes, Health-Related Quality of Life, and Clinical Outcomes for Urothelial Cancer Patients Receiving Chemo- or Immunotherapy: A Real-Life Experience

2021 ◽  
Vol 10 (9) ◽  
pp. 1852
Author(s):  
Gry Assam Taarnhøj ◽  
Henriette Lindberg ◽  
Christoffer Johansen ◽  
Helle Pappot
Keyword(s):  
Quality Of Life ◽  
Cancer Patients ◽  
Patient Reported Outcomes ◽  
Life Experience ◽  
Locally Advanced ◽  
Neoadjuvant Treatment ◽  
Real Life ◽  
Oncological Treatment ◽  
Patient Reported

Patients with urothelial cell carcinoma (UCC) often have comorbidities, which cause trouble for the completion of oncological treatment, and little is known about their quality of life (QoL). The aim of the present study was to obtain and describe patient-reported outcomes (PRO) and QoL data from UCC patients in the treatment for locally advanced muscle-invasive or metastatic UCC. A total of 79 patients with UCC completed four questionnaires (EORTC QLQ-C30, QLQ-BLM30, HADS, and select PRO-CTCAE™ questions) once weekly during their treatment. From those, 26 patients (33%) underwent neoadjuvant treatment for local disease while 53 patients (67%) were treated for metastatic disease. Of all patients, 54% did not complete the planned treatment due to progression, nephrotoxicity, death, or intolerable symptoms during treatment. The five most prevalent PRO-CTCAE grade ≥ 2 symptoms were frequent urination (37%), fatigue (35%), pain (31%), dry mouth (23%), and swelling of the arms or legs (23%). The baseline mean overall QoL was 61 (±SD 24) for all patients (neoadjuvant (73, ±SD 19) and metastatic (54, ±SD 24)) and remained stable over the course of treatment for both groups. A stable overall QoL was observed for the patients in this study. More than half of the patients did not, however, complete the planned treatment. Further supportive care is warranted for bladder cancer patients.

Trends in Hidradenitis Suppurativa Disease Severity and Quality of Life Outcome Measures: A Systematic Review (Preprint)

2021 ◽  
Author(s):  
Jalal Maghfour ◽  
Torunn Elise Sivesind ◽  
Cory A. Dunnick ◽  
Robert Paul Dellavalle
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Disease Severity ◽  
Outcome Measures ◽  
Hidradenitis Suppurativa ◽  
Life Quality ◽  
Clinical Score ◽  
Validity And Reliability ◽  
Patient Reported

BACKGROUND While there has been an increase in the number of randomized, controlled trials (RCTs) evaluating treatment efficacy for HS, instrument measurements of disease severity and quality of life (QoL) are varied, making compilation of data and comparison between studies a challenge for clinicians. OBJECTIVE The aim of this review is to evaluate trends in disease severity scales and patient reported outcome measures used in RCTs assessing treatment interventions among HS patients. METHODS A primary systematic literature review was conducted in August 2020. PubMed/MEDLINE, Embase, Web of Science, and Cochrane databases were used to identify all articles published from January 1964 to July 2020. The study was prospectively registered with PROSPERO (ID: 209582). Twenty-five articles were included in the systematic review. RESULTS Sartorius and modified Sartorius scores (n=8), and Hidradenitis Suppurativa Clinical score (HiSCs) (n=8) were the most commonly used instruments for disease severity. Participants’ pain, followed by Dermatology Life Quality Index (DLQI), were the most common QoL measures used in the reviewed studies. CONCLUSIONS Heterogeneity of data characterizing both the validity and reliability of existing outcome measures hinders interpretation and translation of the results from RCTs into clinical practice. Many of the QoL measures identified were not specific to HS and may not be representative of all factors impacting patients.

scholarly journals Efficacy of adalimumab in moderate to severe hidradenitis suppurativa: Real life data

2018 ◽  
Vol 10 (2) ◽  
Author(s):  
Aikaterini Kyriakou ◽  
Anastasia Trigoni ◽  
Nikiforos Galanis ◽  
Dimitrios Sotiriadis ◽  
Aikaterini Patsatsi
Keyword(s):  
Quality Of Life ◽  
Hidradenitis Suppurativa ◽  
Therapeutic Potential ◽  
Therapeutic Option ◽  
Real Life ◽  
Life Quality ◽  
Global Assessment Scale ◽  
Friedman's Test ◽  
Adalimumab Treatment

Hidradenitis suppurativa (HS) is a relapsing, inflammatory disease characterized by painful nodules, abscesses, sinuses track formation and scarring. HS has a great impact on patients’ quality of life and its treatment may be really challenging. Adalimumab provides a new therapeutic option for HS. Our aim was to assess the therapeutic potential of adalimumab on patients with HS based on the data from the daily clinical practice of an HS Outpatient Clinic. 19 patients with clinically evident moderate to severe HS, under adalimumab treatment for at least 24 week, participated in this observational, retrospective study. The Hidradenitis Suppurativa Physician’s Global Assessment scale, Modified Santorius scale and Dermatology Life Quality Index (DLQI) at baseline, week 4, week 12 and week 24 were retrieved from the records. Both Modified Santorius score and DLQI were significantly decreased during the weeks of evaluation (Friedman’s test; P < 0.001). The proportion of patients who achieved clinical response was 10.5% (n = 2) at week 4, 42.1% (n = 8) at week 12 and 63.2% (n = 12) at week 24. Treatment with adalimumab was linked with both clinical remission of HS and improvement of patients’ quality of life.

scholarly journals Quality of life and mental health in breast cancer survivors compared with non-cancer controls: a study of patient-reported outcomes in the United Kingdom

2020 ◽  
Author(s):  
Helena Carreira ◽  
Rachael Williams ◽  
Harley Dempsey ◽  
Susannah Stanway ◽  
Liam Smeeth ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Primary Care ◽  
Cancer Survivors ◽  
Patient Reported Outcomes ◽  
Breast Cancer Survivors ◽  
Patient Reported ◽  
History Of ◽  
History Of Cancer

Abstract Purpose There is limited high-quality evidence on quality of life, anxiety, and depressive symptoms in breast cancer survivors and women with no history of cancer. We aimed to address this by comparing patient-reported outcomes between breast cancer survivors and women with no history of breast cancer. Methods Breast cancer survivors and women with no prior cancer were selected from the UK Clinical Practice Research Datalink GOLD primary care database, which includes population-based primary care electronic health record data. Breast cancer survivors and controls were frequency matched by age and primary care practice. Outcomes were assessed with validated instruments via postal questionnaire. Linear and logistic regression models were fitted to estimate adjusted associations between breast cancer survivorship and outcomes. Results A total of 356 breast cancer survivors (8.1 years post diagnosis) and 252 women with no prior cancer participated in the study. Compared with non-cancer controls, breast cancer survivors had poorer QoL in the domains of cognitive problems (adjusted β (aβ) = 1.4, p = 0.01), sexual function (aβ = 1.7, p = 0.02) and fatigue (aβ = 1.3, p = 0.01), but no difference in negative feelings, positive feelings, pain, or social avoidance. Breast cancer survivors had higher odds of borderline-probable anxiety (score ≥ 8) (adjusted OR = 1.47, 95%CI:1.15–1.87), but no differences in depression. Advanced stage at diagnosis and chemotherapy treatment were associated with poorer QoL. Conclusions Compared with women with no history of cancer, breast cancer survivors report more problems with cognition, sexual function, fatigue, and anxiety, particularly where their cancer was advanced and/or treated with chemotherapy. Implications for Cancer Survivors Breast cancer survivors with more advanced disease and/or treated with chemotherapy should be closely monitored and, when possible, offered evidence-based intervention for fatigue, cognitive dysfunction, and sexual problems.

scholarly journals Patient Reported Outcome (PRO) in Patients Receiving High and Moderate Emetogenic Chemotherapy (Ctx) - Results of a German Prospective Non-Interventional Study with Netupitant/Palonosetron Fixed Dose Combination (NEPA)

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 4844-4844 ◽  
Author(s):  
Meinolf Karthaus ◽  
P Klare ◽  
N Gazawi ◽  
MO Zahn ◽  
B Reimann ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Real Life ◽  
Fixed Dose Combination ◽  
Moderate Intensity ◽  
Fixed Dose ◽  
Interventional Study ◽  
Patient Reported ◽  
Dose Combination ◽  
Good For

Abstract Introduction:NEPA is a fixed dose combination of the NK1-receptor antagonist (RA) netupitant and 5-HT3-RA palonosetron approved for prevention of chemotherapy-induced nausea and vomiting (CINV) in pts receiving highly emetogenic (HEC) on cisplatin-basis or moderately emetogenic Ctx (MEC). NEPA demonstrated safety and efficacy in platinum, anthracycline and cyclophosphamid based Ctx, These drugs are frequently used in regimens for hematology pts. A German non-interventional study investigated NEPA's efficacy and impact on quality of life in adult cancer pts by patient-related outcomes (PRO) and physicians' personal assessment under real life conditions. Primary objective was the evaluation of quality of life (QoL) in adults receiving NEPA for CINV prevention. Secondary endpoints were efficacy and safety of NEPA. Methods: Open label, non-interventional, prospective, national, multicenter study that evaluates CINV prevention and patients' QoL receiving NEPA in pts with either HEC or MEC on up to 2 consecutive Ctx days for at least consecutive 3 cycles. QoL was evaluated by the validated FLIE questionnaires at the end of each Ctx cycle. Efficacy was documented by the treating physicians and via patient diaries for 3 Ctx cycles within 24 hrs and on 4 additional d after Ctx. Safety, additional medication and physicians' overall satisfaction was reported via eCRF. Results: Between June 2015 and Sept 2017 a total of 2429 pts were enrolled with 1997 pts being eligible for the 2nd interim analysis. 1901 pts were included in the efficacy analysis in the 1st, 1808 pts in the 2nd and 1734 pts in the 3rd cycle. Median age was 58 (range of 28-89). A total of 630 evaluable pts received MEC (53% carboplatin based) and 1185 pts received HEC (88% anthracycline/ cyclophosphamide based), PRO with complete response (CR=no nausea, no vomiting, no rescue medication) was analyzed based on patient diaries. Diaries for PRO in MEC-pts (n=401) reported CR in 94% in cycle 1, 85% in cycle 2 and 86% in cycle 3. Efficacy, assessed by physicians (n=630 pts) on a 4-point scale, was rated very good/good for 91%, 93%, and 94% in cycle 1, 2 and 3, respectively. PRO of 896 pts with HEC reported 81% CR in cycle 1, 82% in cycle 2 and 83% in cycle 3. Efficacy, assessed by physicians (1185 HEC pts), was rated very good/good for 88%, 89%, and 90% in cycle 1, 2 and 3, respectively. A high percentage of patients receiving HEC or MEC did not suffer from any emesis (93%, 93% and 94% in cycle 1-3, respectively). Over 85%of pts reported no impact on daily QoL due to vomiting in all 3 cycles with HEC or MEC.The most common treatment emergent adverse events were constipation and insomnia of mild-moderate intensity. Conclusions: NEPA prevented CINV highly effective in the acute and delayed phase of HEC and MEC with no impact on daily life due to vomiting in >85% of pts. Physicians evaluation was concordant to PRO.Safety profile was good. Disclosures Karthaus: Riemser: Consultancy. Schilling:Riemser: Honoraria.

scholarly journals The Use of HSQoL-24 in an Assessment of Quality-of-Life Impairment among Hidradenitis Suppurativa Patients: First Look at Real-Life Data

2021 ◽  
Vol 10 (22) ◽  
pp. 5446
Author(s):  
Piotr K. Krajewski ◽  
Servando E. Marrón ◽  
Manuel Gomez-Barrera ◽  
Lucía Tomas-Aragones ◽  
Yolanda Gilaberte-Calzada ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Hidradenitis Suppurativa ◽  
Disease Onset ◽  
Real Life ◽  
Clinical Settings ◽  
Life Data ◽  
Real Life Data ◽  
Inflammatory Skin Disorder ◽  
Family House

Hidradenitis suppurativa (HS) is a chronic inflammatory skin disorder with well-documented effects on patients’ quality of life (QoL). The aim of this study was to evaluate the QoL of patients with HS via the use of a newly developed questionnaire: Hidradenitis Suppurativa Quality of Life-24 (HSQoL-24). This study was performed on a population of 342 HS patients. Their QoL was assessed via the HSQoL-24 questionnaire. The perceived impairment of QoL due to HS in the studied group was considered to be serious (mean HSQoL-24 score: 58.3 ± 21.0 points). Women tended to experience a significantly higher impact from the disease than men (61.6 ± 19.2 points vs. 51.1 ± 23.1 points, p < 0.001). The HS severity had an effect on the perceived QoL, with statistically significant differences being evident between the self-assessed HS severity groups. The level of QoL impairment correlated positively with the number of affected body areas (r = 0.285, p < 0.001) and the duration of the disease (r = 0.173, p = 0.001), while the patients’ age at disease onset correlated negatively with the HSQoL-24 global score (r = −0.182, p = 0.001). Patients living in their family house scored higher than other groups. The least affected were patients who lived alone. The study shows that the HSQoL-24 questionnaire is a reliable, HS-specific tool for measuring the QoL among patients with HS in real-life clinical settings.

Association of treatment type with patient-reported quality of life in cancer distress screening.

2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 178-178
Author(s):  
Mohana Roy ◽  
Sarah Rosenthal ◽  
Manan P Shah ◽  
Ali Raza Khaki ◽  
Selen Bozkurt ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Post Treatment ◽  
Disease Stage ◽  
Distress Screening ◽  
Treatment Type ◽  
Significant Difference ◽  
Patient Reported ◽  
The Us ◽  
Clinically Significant

178 Background: Routine distress screening is recommended for all patients with cancer. In 2015, Stanford Cancer Center implemented such screening using a modified PROMIS-GH questionnaire. With the recent growth of oncology drugs, novel medications have been perceived as better tolerated than chemotherapy. We analyzed patient reported quality of life with global mental health (GMH) and global physical health (GPH) scores for different medication classes. Methods: Patients who completed a questionnaire at our center between 6/1/2015 and 12/31/2020 were included. Medications were classified as chemotherapy, targeted therapy, endocrine therapy, or immunotherapy using guidance from SEER.Rx ontology. Baseline (B) and treatment (Tx) questionnaires were completed before any treatment initiation of each medication type and within 3 months of each treatment, respectively. GPH and GMH scores were calculated using PROMIS T-scores stratified by medication type for B and Tx questionnaires. We analyzed for differences based on demographics and diagnoses. Clinically significant differences were defined as a 3-point difference in T-scores, which then prompted statistical comparison with t-tests to compare the B and Tx scores to each other and to the US population mean of 50. Results: We analyzed 28,180 questionnaires from 11,644 patients (59% women, median age 64; 23% stage I and II, 12% stage III, 23% stage IV, 51% missing). B and Tx mean GMH scores did not differ clinically compared to the US mean or to each other (baseline: 49.03 +/- 9.16, post: 48.5 +/- 9.1). However, both mean GPH scores were statistically and clinically lower (baseline: 44.2+/- 10.38, post: 42.4 +/- 10.1,) compared to the US mean (p < 0.001). Changes in scores by treatment category are shown in the table below. There was a statistically significant difference in post-treatment GPH scores for chemo-immunotherapy patients when compared to both corresponding baseline scores (p < 0.001) and post treatment chemotherapy alone scores (p < 0.001). There was no clinically significant difference in scores when stratified by age, sex, primary language, insurance, disease stage or type. Conclusions: In this large retrospective study, we found that patients being treated for cancer did not report worse GMH scores compared to the US mean population, but do report lower GPH scores. While most scores varied little relative to other treatment types, those receiving chemo-immunotherapy had lower GPH scores when comparing baseline to treatment and to the US mean, warranting further investigation, given increasing use.[Table: see text]

scholarly journals The use of real-world effectiveness measurements in clinical settings at Helsinki University Hospital: a systematic literature review

2020 ◽  
Vol 9 (5) ◽  
pp. 321-326
Author(s):  
Kati Koskinen ◽  
Maija Hytönen ◽  
Pirjo Räsänen
Keyword(s):  
Quality Of Life ◽  
Real World ◽  
Real Life ◽  
University Hospital ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Quality Of Life Instruments

Aim: Patient reported outcomes collected alongside clinical trials do not reflect real-world effectiveness (RWE). This review assessed the use of RWE measurements in routine clinical treatment and the instruments applied to collect that data. Materials & methods: The RWE articles published from HUS (Helsinki University Hospital) were extracted from several databases. Results: Out of 170 eligible articles, generic health-related quality of life instruments were used in 87 (51.2%) and disease-specific health-related quality of life instruments in 58 (34.1%) articles as a primary measurement. Most of the articles pertained to surgery, gynecology and pediatric surgery. Conclusion: The number of articles assessing RWE is very limited compared with all the articles published from HUS. Thus, we still have limited information about the effectiveness of the treatment in real life.

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