The effect of surgery in tenosynovial giant cell tumours as measured by patient-reported outcomes on quality of life and joint function

Aims The aim of this study was to evaluate health-related quality of life (HRQoL) and joint function in tenosynovial giant cell tumour (TGCT) patients before and after surgical treatment. Patients and Methods This prospective cohort study run in two Dutch referral centres assessed patient-reported outcome measures (PROMs; 36-Item Short-Form Health Survey (SF-36), visual analogue scale (VAS) for pain, and Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC)) in 359 consecutive patients with localized- and diffuse-type TGCT of large joints. Patients with recurrent disease (n = 121) and a wait-and-see policy (n = 32) were excluded. Collected data were analyzed at specified time intervals preoperatively (baseline) and/or postoperatively up to five years. Results A total of 206 TGCT patients, 108 localized- and 98 diffuse-type, were analyzed. Median age at diagnosis of localized- and diffuse-type was 41 years (interquartile range (IQR) 29 to 49) and 37 years (IQR 27 to 47), respectively. SF-36 analyses showed statistically significant and clinically relevant deteriorated preoperative and immediate postoperative scores compared with general Dutch population means, depending on subscale and TGCT subtype. After three to six months of follow-up, these scores improved to general population means and continued to be fairly stable over the following years. VAS scores, for both subtypes, showed no statistically significant or clinically relevant differences pre- or postoperatively. In diffuse-type patients, the improvement in median WOMAC score was statistically significant and clinically relevant preoperatively versus six to 24 months postoperatively, and remained up to five years’ follow-up. Conclusion Patients with TGCT report a better HRQoL and joint function after surgery. Pain scores, which vary hugely between patients and in patients over time, did not improve. A disease-specific PROM would help to decipher the impact of TGCT on patients’ daily life and functioning in more detail. Cite this article: Bone Joint J 2019;101-B:272–280.

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Changes in attitude towards LAI antipsychotic maintenance treatment: A two-year follow-up study

European Psychiatry ◽

10.1016/j.eurpsy.2018.06.002 ◽

2018 ◽

Vol 53 ◽

pp. 58-65 ◽

Cited By ~ 5

Author(s):

Francesco Pietrini ◽

Giulio D’Anna ◽

Lorenzo Tatini ◽

Gabriela Alina Talamba ◽

Costanza Andrisano ◽

...

Keyword(s):

Quality Of Life ◽

Maintenance Treatment ◽

Subjective Experience ◽

Open Label ◽

Sf 36 ◽

Patient Reported ◽

Long Acting ◽

Prospective Longitudinal

AbstractBackground:To present real-world evidence on the effects of switching from oral to long-acting injectable (LAI) antipsychotic maintenance treatment (AMT) in a sample of clinically stable patients with schizophrenia, with regard to subjective experience of treatment, attitude towards drug and quality of life.Methods:50 clinically stable adult schizophrenic outpatients were recruited. At the time of enrolment (T0), all patients were under a stabilized therapy with a single oral second-generation antipsychotic (SGA) and were switched to the equivalent maintenance regimen with the long-acting formulation of the same antipsychotic. 43 patients completed the 24-month prospective, longitudinal, open-label, observational study. Participants were assessed at baseline (T0), after 12 (T1) and 24 months (T2), using psychometric scales (PANSS, YMRS and MDRS) and patient-reported outcome measures (SWN-K, DAI-10 and SF-36).Results:The switch to LAI-AMT was associated with a significant clinical improvement at T1 and T2 compared to baseline (T0). All of the psychometric indexes, as well as patients’ subjective experience of treatment (SWN-K), and quality of life (SF-36) showed a significant improvement after one year of LAI-AMT, with stable results after two years. Patients’ attitude towards drug (DAI-10) increased throughout the follow-up period, with a further improvement during the second year.Conclusions:The switch to LAI-AMT may help to address the subjective core of an optimal recovery in stabilized schizophrenic patients. A sustained improvement in patients’ attitude towards drug may help to achieve patient’s compliance. The size of this study needs to be expanded to produce more solid and generalizable results.

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Follow-up of tetralogy of Fallot patients: tertiary centre versus satellite clinic

Cardiology in the Young ◽

10.1017/s1047951111000436 ◽

2011 ◽

Vol 21 (4) ◽

pp. 444-453 ◽

Cited By ~ 2

Author(s):

Camille L. Hancock Friesen ◽

Mark Robertson ◽

David Liu ◽

Haley Burton ◽

Katherine Fleming ◽

...

Keyword(s):

Quality Of Life ◽

Health Status ◽

Tetralogy Of Fallot ◽

Health Centre ◽

Subjective Health ◽

Subjective Health Status ◽

Sf 36 ◽

Patient Reported

AbstractBackgroundCanadian Cardiovascular Society consensus guidelines recommend that tetralogy of Fallot patients be seen by a congenital cardiologist every 2 years. In Atlantic Canada, tetralogy of Fallot patients are followed up at either tertiary or satellite clinics, which are held in the community and attended by paediatric cardiologists. The effectiveness of satellite clinics in congenital cardiac disease follow-up is unproven. Our objective was to compare patient-reported quality of life measures to determine whether these were impacted by the site of follow-up.MethodsWe included patients with tetralogy of Fallot undergoing surgical repair at the Izaak Walton Killam Health Centre from 1 November, 1972 to 31 May, 2002. Quality of life surveys, SF-10 or SF-36v2, were administered to consenting patients. We analysed the subjective health status by patient age and site of follow-up.ResultsOf the 184 eligible patients, 72 were lost to follow-up. Of the locatable patients, 61% completed the questionnaires. In all, 90% (101 out of 112) were followed up at recommended intervals. Of the 112 (68%) patients, 76 were followed up at a tertiary clinic. These patients were older, with a mean age of 18.4 years versus 14.7 years, and scored higher on the SF-36 physical component summary (52.6 versus 45.7, p = 0.02) compared with satellite clinic patients. The SF-36 mental component summary scores were similar for patients regardless of the site of follow-up. SF-10 physical and psychosocial scores were similar regardless of the site of follow-up.ConclusionTetralogy of Fallot patients followed at either satellite or tertiary clinics have similar subjective health status.

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Long Covid in adults discharged from UK hospitals after Covid-19: A prospective, multicentre cohort study using the ISARIC WHO Clinical Characterisation Protocol.

10.1101/2021.03.18.21253888 ◽

2021 ◽

Author(s):

Louise Sigfrid ◽

Tom M Drake ◽

Ellen Pauley ◽

Edwin C Jesudason ◽

Piero Olliaro ◽

...

Keyword(s):

Quality Of Life ◽

Cohort Study ◽

Outcome Measures ◽

Symptom Onset ◽

Persistent Symptoms ◽

Patient Reported ◽

The Impact

Structured Abstract Objectives: The long-term consequences of severe Covid-19 requiring hospital admission are not well characterised. The objective of this study was to establish the long-term effects of Covid-19 following hospitalisation and the impact these may have on patient reported outcome measures. Design: A multicentre, prospective cohort study with at least 3 months follow-up of participants admitted to hospital between 5th February 2020 and 5th October 2020. Setting: 31 hospitals in the United Kingdom. Participants: 327 hospitalised participants discharged alive from hospital with confirmed/high likelihood SARS-CoV-2 infection. Main outcome measures and comparisons: The primary outcome was self-reported recovery at least ninety days after initial Covid-19 symptom onset. Secondary outcomes included new symptoms, new or increased disability (Washington group short scale), breathlessness (MRC Dyspnoea scale) and quality of life (EQ5D-5L). We compared these outcome measures across age, comorbidity status and in-hospital Covid-19 severity to identify groups at highest risk of developing long-term difficulties. Multilevel logistic and linear regression models were built to adjust for the effects of patient and centre level risk factors on these outcomes. Results: In total 53.7% (443/824) contacted participants responded, yielding 73.8% (327/443) responses with follow-up of 90 days or more from symptom onset. The median time between symptom onset of initial illness and completing the participant questionnaire was 222 days (Interquartile range (IQR) 189 to 269 days). In total, 54.7% (179/327) of participants reported they did not feel fully recovered. Persistent symptoms were reported by 93.3% (305/325) of participants, with fatigue the most common (82.8%, 255/308), followed by breathlessness (53.5%, 175/327). 46.8% (153/327) reported an increase in MRC dyspnoea scale of at least one grade. New or worse disability was reported by 24.2% (79/327) of participants. Overall (EQ5D-5L) summary index was significantly worse at the time of follow-up (median difference 0.1 points on a scale of 0 to 1, IQR: -0.2 to 0.0). Females under the age of 50 years were five times less likely to report feeling recovered (adjusted OR 5.09, 95% CI 1.64 to 15.74), were more likely to have greater disability (adjusted OR 4.22, 95% CI 1.12 to 15.94), twice as likely to report worse fatigue (adjusted OR 2.06, 95% CI 0.81 to 3.31) and seven times more likely to become more breathless (adjusted OR 7.15, 95% CI 2.24 to 22.83) than men of the same age. Conclusions: Survivors of Covid-19 experienced long-term symptoms, new disability, increased breathlessness, and reduced quality of life. These findings were present even in young, previously healthy working age adults, and were most common in younger females. Policymakers should fund further research to identify effective treatments for long-Covid and ensure healthcare, social care and welfare support is available for individuals with long-Covid.

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Functional and Quality of Life Outcomes of Surgery for Degenerative Cervical Myelopathy: a Quality Improvement Study

Journal of Orthopedic and Spine Trauma ◽

10.18502/jost.v4i2.2956 ◽

2020 ◽

Author(s):

Babak Mirzashahi ◽

Pejman Mansouri ◽

Arvin Najafi ◽

Saeed Besharati ◽

Mohammad Taha Kouchakinejad ◽

...

Keyword(s):

Quality Of Life ◽

Cervical Myelopathy ◽

Short Form ◽

Sf 36 ◽

Patient Reported ◽

Vas Scores ◽

One Year ◽

Degenerative Cervical Myelopathy

Background: This study aimed to determine the outcome of surgical treatments in patients with degenerative cervical myelopathy (DCM). During one-year follow-up period, we evaluated patient-reported functional and quality of life (QOL) measures. Methods: In a retrospective single-center study, we collected data of patients with DCM who underwent cervical fusion surgeries in Imam Khomeini Hospital, Tehran, Iran, from 2011 to 2015. Patients underwent single or multi-level anterior cervical discectomy and fusion (ACDF), anterior cervical corpectomy and fusion (ACCF), or posterior laminectomy and fusion. We utilized patient-reported assessments including Short Form 36 (SF-36), Visual Analogue Scale (VAS), Neck Disability Index (NDI), and Nurick grade. Follow-up was performed at 6 weeks, 3 months, 6 months, and 12 months post-operatively to assess the outcome of surgery. Results: Ninety patients (56 men, 34 women) with a mean age of 54.1 (27-87) years were included. Comparison of pre- and post-operative scores showed significant improvement in SF-36 parameters, VAS, NDI, and Nurick grade (P < 0.001). Also, women’s VAS scores improved more than men's VAS scores during the follow-up period (P < 0.050). Age and type of surgery did not significantly affect the SF-36 parameters, VAS, NDI, and Nurick grade (P > 0.05). Conclusions: Cervical surgeries in patients with different severity of DCM can improve different aspects of QOL during one-year after surgery

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The Impact of Spondyloarthritis and Joint Symptoms on Health-Related Quality of Life and Fatigue in IBD Patients. Results From a Population-Based Inception Cohort (20-Year Follow-up in the Ibsen Study)

Inflammatory Bowel Diseases ◽

10.1093/ibd/izz105 ◽

2019 ◽

Vol 26 (1) ◽

pp. 114-124 ◽

Cited By ~ 2

Author(s):

Alvilde Maria Ossum ◽

Øyvind Palm ◽

Milada Cvancarova ◽

Tomm Bernklev ◽

Jørgen Jahnsen ◽

...

Keyword(s):

Quality Of Life ◽

Negative Impact ◽

Population Based ◽

Patient Reported ◽

Joint Symptoms ◽

Related Quality ◽

Health Related ◽

The Impact

Ongoing joint pain and back pain were associated with reduced quality of life and fatigue in IBD patients after 20 years of disease, whereas spondyloarthritis without ongoing joint symptoms did not have a negative impact on these patient-reported outcomes.

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Bevacizumab in neurofibromatosis type 2 (NF2) related vestibular schwannomas: a nationally coordinated approach to delivery and prospective evaluation

Neuro-Oncology Practice ◽

10.1093/nop/npv065 ◽

2016 ◽

Vol 3 (4) ◽

pp. 281-289 ◽

Cited By ~ 15

Author(s):

Katrina A. Morris ◽

John F. Golding ◽

Patrick R. Axon ◽

Shazia Afridi ◽

Claire Blesing ◽

...

Keyword(s):

Quality Of Life ◽

Adverse Events ◽

Neurofibromatosis Type ◽

Vestibular Schwannomas ◽

Predictors Of Response ◽

Patient Reported ◽

Iatrogenic Damage ◽

The Impact

Abstract Background NF2 patients develop multiple nervous system tumors including bilateral vestibular schwannomas (VS). The tumors and their surgical treatment are associated with deafness, neurological disability, and mortality. Medical treatment with bevacizumab has been reported to reduce VS growth and to improve hearing. In addition to evaluating these effects, this study also aimed to determine other important consequences of treatment including patient-reported quality of life and the impact of treatment on surgical VS rates. Methods Patients treated with bevacizumab underwent serial prospective MRI, audiology, clinical, CTCAE-4.0 adverse events, and NFTI-QOL quality-of-life assessments. Tumor volumetrics were classified according to the REiNs criteria and annual VS surgical rates reviewed. Results Sixty-one patients (59% male), median age 25 years (range, 10–57), were reviewed. Median follow-up was 23 months (range, 3–53). Partial volumetric tumor response (all tumors) was seen in 39% and 51% had stabilization of previously growing tumors. Age and pretreatment growth rate were predictors of response. Hearing was maintained or improved in 86% of assessable patients. Mean NFTI-QOL scores improved from 12.0 to 10.7 (P < .05). Hypertension was observed in 30% and proteinuria in 16%. Twelve treatment breaks occurred due to adverse events. The rates of VS surgery decreased after the introduction of bevacizumab. Conclusion Treatment with bevacizumab in this large, UK-wide cohort decreased VS growth rates and improved hearing and quality of life. The potential risk of surgical iatrogenic damage was also reduced due to an associated reduction in VS surgical rates. Ongoing follow-up of this cohort will determine the long-term benefits and risks of bevacizumab treatment.

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The Patient Perspective on the Impact of Tenosynovial Giant Cell Tumors on Daily Living: Crowdsourcing Study on Physical Function and Quality of Life (Preprint)

10.2196/preprints.9325 ◽

2017 ◽

Author(s):

Monique Josephine Mastboom ◽

Rosa Planje ◽

Michiel Adreanus van de Sande

Keyword(s):

Quality Of Life ◽

Risk Factors ◽

Physical Function ◽

Giant Cell ◽

Daily Living ◽

Patient Perspective ◽

Recurrent Disease ◽

Diffuse Type ◽

The Impact

BACKGROUND Tenosynovial giant cell tumor (TGCT) is a rare, benign lesion affecting the synovial lining of joints, bursae, and tendon sheaths. It is generally characterized as a locally aggressive and often recurring tumor. A distinction is made between localized- and diffuse-type. The impact of TGCT on daily living is currently ill-described. OBJECTIVE The aim of this crowdsourcing study was to evaluate the impact of TGCT on physical function, daily activities, societal participation (work, sports, and hobbies), and overall quality of life from a patient perspective. The secondary aim was to define risk factors for deteriorated outcome in TGCT. METHODS Members of the largest known TGCT Facebook community, PVNS is Pants!!, were invited to an e-survey, partially consisting of validated questionnaires, for 6 months. To confirm disease presence and TGCT-type, patients were requested to share histological or radiological proof of TGCT. Unpaired t tests and chi-square tests were used to compare groups with and without proof and to define risk factors for deteriorated outcome. RESULTS Three hundred thirty-seven questionnaires, originating from 30 countries, were completed. Median age at diagnosis was 33 (interquartile range [IQR]=25-42) years, majority was female (79.8% [269/337]), diffuse TGCT (70.3% [237/337]), and affected lower extremities (knee 70.9% [239/337] and hip 9.5% [32/337]). In 299 lower-extremity TGCT patients (32.4% [97/299]) with disease confirmation, recurrence rate was 36% and 69.5% in localized and diffuse type, respectively. For both types, pain and swelling decreased after treatment; in contrast, stiffness and range of motion worsened. Patients were limited in their employment (localized 13% [8/61]; diffuse 11.0% [21/191]) and sport-activities (localized 58% [40/69]; diffuse 63.9% [147/230]). Compared with general US population, all patients showed lower Patient-Reported Outcomes Measurements Information System-Physical Function (PROMIS-PF), Short Form-12 (SF-12), and EuroQoL 5 Dimensions 5 Levels (EQ5D-5L) scores, considered clinically relevant, according to estimated minimal important difference (MID). Diffuse versus localized type scored almost 0.5 standard deviation lower for PROMIS-PF (P<.001) and demonstrated a utility score of 5% lower for EQ-5D-5L (P=.03). In localized TGCT, recurrent disease and ≥2 surgeries negatively influenced scores of Visual Analog Scale (VAS)-pain/stiffness, SF-12, and EQ-5D-5L (P<.05). In diffuse type, recurrence resulted in lower score for VAS, PROMIS-PF, SF-12, and EQ-5D-5L (P<.05). In both types, patients with treatment ≤1year had significantly lower SF-12. CONCLUSIONS TGCT has a major impact on daily living in a relatively young and working population. Patients with diffuse type, recurrent disease, and ≥2 surgeries represent lowest functional and quality of life outcomes. Physicians should be aware that TGCT patients frequently continue to experience declined health-related quality of life and physical function and often remain limited in daily life, even after treatment(s).

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P089 THE IMPACT OF VENTRAL HERNIA REPAIR ON PATIENT-REPORTED QUALITY OF LIFE: IDENTIFYING FACTORS ASSOCIATED WITH IMPROVEMENT

British Journal of Surgery ◽

10.1093/bjs/znab395.083 ◽

2021 ◽

Vol 108 (Supplement_8) ◽

Author(s):

Martin Morris ◽

Viren Patel ◽

Adrienne Christopher ◽

Robyn Broach ◽

John Fischer

Keyword(s):

Quality Of Life ◽

Hernia Repair ◽

Ventral Hernia ◽

Ventral Hernia Repair ◽

Abdominal Hernia ◽

Factors Associated ◽

Patient Reported ◽

The Impact

Abstract Aim Assessing pre- and postoperative quality of life (QoL) is essential to quantify the magnitude of improvement in disease burden after ventral hernia repair (VHR). Here, we identify patient and operative factors associated with QoL improvement after VHR. Material and Methods Patients that underwent VHR by a single surgeon were retrospectively identified and included if they had minimum 1 year of follow-up, and completed pre- and postoperative Abdominal Hernia-Q (AHQ) questionnaires. Patients were divided into quintiles based on absolute pre- to postoperative improvement in AHQ score. Chi-squared and fisher’s exact tests were used for categorical data, and Student’s t-test for continuous data, as appropriate. Results Compared to the lowest quintile (n = 27, follow-up 32.6 months, mean improvement 3.24 [SD 10.4]), patients in the highest quintile (n = 26, follow up 23.9 months, mean improvement 66.3 [SD 12.1]) were female (76.9% vs 37.0%, p = 0.005) with a greater number of previous hernia repairs (mean 2.12 vs. 0.78, p < 0.005) and previous abdominal surgeries (mean 4.0 vs 2.0, p < 0.001). Patients with greater improvement also had higher incidences of delayed healing (42.3% vs 7.41%), required more office visits (5.54 vs 3.89), and had higher inpatient costs ($30,084 USD vs. $16,886, all p < 0.05). No significant differences were seen in terms of race, ethnicity, body mass index, age, length of stay, Clavien-Dindo scores, hernia recurrence, or other postoperative complications. Conclusions Despite increased preoperative risk and healthcare burden, some of the most significant QoL improvement after VHR is demonstrated in patients with complex repairs and recoveries. This indicates the global utility of VHR regardless of patient demographics and complicating perioperative factors.

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The impact of ocrelizumab on health-related quality of life in individuals with multiple sclerosis

Multiple Sclerosis Journal - Experimental Translational and Clinical ◽

10.1177/20552173211007523 ◽

2021 ◽

Vol 7 (2) ◽

pp. 205521732110075

Author(s):

Bonnie I Glanz ◽

Jonathan Zurawski ◽

Emily C Casady ◽

Rebecca Shamah ◽

Mira Weiner ◽

...

Keyword(s):

Quality Of Life ◽

Multiple Sclerosis ◽

Clinical Characteristics ◽

Health Related Quality ◽

Sf 36 ◽

Patient Reported ◽

Related Quality ◽

Health Related ◽

The Impact

Background Ocrelizumab is approved for the treatment of both relapsing and progressive multiple sclerosis (MS). Objective To examine the impact of ocrelizumab on health-related quality of life (HRQOL) in individuals with MS. Methods Ninety-eight individuals with relapsing and 32 with progressive MS were enrolled. Participants were administered a battery of patient-reported outcome (PRO) measures at their first ocrelizumab infusion, and infusions at 6 and 12 months. PRO measures included the Medical Outcomes Study SF-36 and Neuro-QoL. Results At baseline, participants had low mean scores across HRQOL domains. After 12 months, increases were observed on SF-36 Role-Physical, General Health, Vitality, Role-Emotional, Mental health and Mental Component Summary. On Neuro-QoL, improvements were seen in Positive Affect, Anxiety, Emotional and Behavioral Dyscontrol and Fatigue. Several demographic and clinical characteristics were associated with HRQOL at baseline. The strongest associations were between physical HRQOL measures and measures of MS disability. Associations between the longitudinal change in HRQOL scores and baseline demographic and clinical characteristics were mild. Conclusions We observed significant improvements across multiple mental HRQOL domains at 12 months in individuals treated with ocrelizumab. These findings support the use of HRQOL measures to provide a subjective measure of treatment impact that complements traditional outcomes.

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