scholarly journals Patient Reported Experience of Clinical Care of Osteogenesis Imperfecta (OI) During The COVID-19 Pandemic

Author(s):  
Debra Smyth ◽  
Monica Hytiris ◽  
Coreen Kelday ◽  
Ciara McDonnell ◽  
Christine Burren ◽  
...  

Abstract Background Research on the effects of the COVID-19 pandemic on people with rare diseases is limited. Few studies compare healthcare throughout the progression of the ongoing pandemic.Aims To assess the impact of lockdown on individuals with OI (Osteogenesis Imperfecta) across two consecutive years of the pandemic, to understand what challenges were encountered, and to analyse the experience of remote consultation.Methods Two independent surveys were distributed in August 2020 and April 2021. The primary survey was distributed following the first lockdown, and the second survey built on the experiences reported from the initial survey. The surveys explored four key themes- effects on therapy, alternatives to consultation, effect on mental health, and perceived risks of COVID-19.Results In the primary 2020 survey of the 110 respondents 69 (63%) had at least one appointment delayed due to lockdown, increasing to 89 of the 124 respondents (72%) in the follow-up survey. Of the 110 initial survey participants, 57 (52%) had a remote consultation, increasing to 92 of 124 (74%) in the follow-up survey. In the primary survey 63 of 91 (69%) expressed increasing anxiety due to lockdown, compared with 76 of 124 (61%) in the follow-up survey. In the primary survey 12 of 91 respondents (13%) expressed concerns at not seeing friends and family compared with 103 of 124 (83%) in the follow-up survey. In the second survey of 124 participants there were concerns regarding weight and diet (55, 44%), mobility (70, 56%), pain (71, 57%), and keeping physically active (89, 72%). The majority of participants felt they would have a worse illness and require longer rehabilitation than someone without OI (81 of 117 respondents, and 77 of 120 respectively), and the majority of participants (68%) had been vaccinated at the time of the second survey.Conclusions The pandemic has had widespread effects on both the mental and physical health of those with OI. These repercussions are likely to be felt for years to come. On the other hand, the pandemic has also revealed that in certain situations remote consultation may prove a viable long-lasting alternative to face-to-face appointments.

2019 ◽  
Vol 101-B (3) ◽  
pp. 272-280 ◽  
Author(s):  
F. G. M. Verspoor ◽  
M. J. L. Mastboom ◽  
G. Hannink ◽  
W. T. A. van der Graaf ◽  
M. A. J. van de Sande ◽  
...  

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.


Author(s):  
Emanuele Monda ◽  
◽  
Adelaide Fusco ◽  
Alessandro Della Corte ◽  
Martina Caiazza ◽  
...  

AbstractPatients with bicuspid aortic valve (BAV) have an increased risk of aortic dilation and aortic dissection or rupture. The impact of physical training on the natural course of aortopathy in BAV patients remains unclear. The aim of this study was to evaluate the impact of regular physical activity on aortic diameters in a consecutive cohort of paediatric patients with BAV. Consecutive paediatric BAV patients were evaluated and categorized into two groups: physically active and sedentary subjects. Only the subjects with a complete 2-year follow-up were included in the study. To evaluate the potential impact of physical activity on aortic size, aortic diameters were measured at the sinus of Valsalva and mid-ascending aorta using echocardiography. We defined aortic diameter progression the increase of aortic diameter ≥ 10% from baseline. Among 90 BAV patients (11.5 ± 3.4 years of age, 77% males), 53 (59%) were physically active subjects. Compared to sedentary, physically active subjects were not significantly more likely to have > 10% increase in sinus of Valsalva (13% vs. 8%, p-value = 0.45) or mid-ascending aorta diameter (9% vs. 13%, p-value = 0.55) at 2 years follow-up, both in subjects with sinus of Valsalva diameter progression (3.7 ± 1.0 mm vs. 3.5 ± 0.8 mm, p-value = 0.67) and in those with ascending aorta diameter progression (3.0 ± 0.8 mm vs. 3.2 ± 1.3 mm, p-value = 0.83). In our paediatric cohort of BAV patients, the prevalence and the degree of aortic diameter progression was not significantly different between physically active and sedentary subjects, suggesting that aortic dilation is unrelated to regular physical activity over a 2-year period.


2021 ◽  
pp. 219256822098827
Author(s):  
Zachariah W. Pinter ◽  
Anthony Mikula ◽  
Matthew Shirley ◽  
Ashley Xiong ◽  
Scott Wagner ◽  
...  

Study Design: Retrospective cohort study. Objective: Studies investigating the impact of interbody subsidence in ACDF suggest a correlation between subsidence and worse radiographic and patient-reported outcomes. The purpose of this study was to assess whether allograft subsidence assessed on CT is associated with worse cervical alignment. Methods: We performed a retrospective review of a prospective cohort of patients undergoing 1 to 3 level ACDF. Cervical alignment was assessed on standing radiographs performed preoperatively, less than 2 months postoperatively, and greater than 6 months postoperatively. Allograft subsidence was assessed on CT scan performed at least 6 months postoperatively. Patients with at least 1 level demonstrating greater than 4mm of cage subsidence were classified as severe subsidence. Student’s t-test was used to compare all means between groups. Results: We identified 66 patients for inclusion, including 56 patients with non-severe subsidence and 10 patients with severe subsidence. For the entire cohort, there was a significant increase in C2-7 Lordosis (p = 0.005) and Segmental Lordosis (p < 0.00 001) from preoperative to early postoperative. On comparison of severely and non-severely subsided levels, severely subsided levels demonstrated a significantly greater loss of segmental lordosis from early to mid-term follow-up than non-severely subsided levels (-4.89 versus -2.59 degrees, p < 0.0001), manifesting as a significantly lower segmental lordosis at >6 months postoperative (0.54 versus 3.82 degrees, p < 0.00 001). There were no significant differences in global cervical alignment parameters between patients with severe and non-severe subsidence. Conclusions: Severe subsidence is associated with a significant increase in loss of segmental lordosis, but has minimal effect on global cervical alignment parameters.


2021 ◽  
Vol 42 (Supplement_1) ◽  
pp. S2-S3
Author(s):  
Callie Abouzeid ◽  
Audrey E Wolfe ◽  
Gretchen J Carrougher ◽  
Nicole S Gibran ◽  
Radha K Holavanahalli ◽  
...  

Abstract Introduction Burn survivors often face many long-term physical and psychological symptoms associated with their injury. To date, however, few studies have examined the impact of burn injuries on quality of life beyond 2 years post-injury. The purpose of this study is to examine the physical and mental well-being of burn survivors up to 20 years after injury. Methods Data from the Burn Model System National Database (1997–2020) were analyzed. Patient-reported outcome measures were collected at discharge with a recall of preinjury status, and then at 5, 10, 15, and 20 years after injury. Outcomes examined were the Physical Component Summary (PCS) and Mental Component Summary (MCS) of the Short Form-12. Trajectories were developed using linear mixed methods model with repeated measures of PCS and MCS scores over time and controlling for demographic and clinical variables. The model fitted score trajectory was generated with 95% confidence intervals to demonstrate score changes over time and associations with covariates. Results The study population included 420 adult burn survivors with a mean age of 42.4 years. The population was mainly male (66%) and white (76.4%) with a mean burn size of 21.5% and length of hospital stay of 31.3 days. Higher PCS scores were associated with follow-up time points closer to injury, shorter hospital stay, and younger age. Similarly, higher MCS scores were associated with earlier follow-up time points, shorter hospital stay, female gender, and non-perineal burns. MCS trajectories are demonstrated in the Figure. Conclusions Burn survivors’ physical and mental health worsened over time. Such a trend is different from previous reported results for mental health in the general population. Demographic and clinical predictors of recovery over time are identified.


2021 ◽  
Vol 108 (Supplement_7) ◽  
Author(s):  
Hannah Elkadi ◽  
Eleanor Dodd ◽  
Theodore Poulton ◽  
William Bolton ◽  
Joshua Burke ◽  
...  

Abstract Aims Despite being the most common surgical procedure, there is wide variation that exists in the management of simple subcutaneous abscesses with no national guideline describing best practice. During the COVID-19 Pandemic national guidelines promoted the use of regional or local anaesthetic (LA) instead of general anaesthesia (GA) to avoid aerosol generating intubation associated with GA. This study aimed to assess the impact of anaesthetic choice in outcomes following incision and drainage of subcutaneous abscesses. Methods Two cohorts of patients undergoing abscess incision and drainage at St. James’ University Hospital Leeds were retrospectively identified over a 14-week period before and after the introduction of the new COVID-19 anaesthetic guidelines. Wound healing surrogate endpoints were used: i) total number of follow up appointments and ii) attendance to healthcare services after 30 days from I&D. Result 133 patients were included. Significantly more procedures were performed under LA after the intervention (84.1% vs 5.7%; p &lt; 0.0001) with a significant reduction in wound packing (68.3% vs 87.1%. p=0.00473). Follow up data found no significant difference in the average number of follow-up appointments (7.46 vs 5.11; p = 0.0731) and the number of patients who required ongoing treatment after 30 days (n = 14 vs n = 14, p = 0.921). Conclusion Drainage of simple subcutaneous abscess under 5 cm is safe under local anaesthetic with no significant difference in surrogate endpoints of wound healing observed in this patient cohort. Recurrent packing may not be required. Future work should explore patient reported measures such as pain management and the health economics of this intervention.


2020 ◽  
Vol 5 (4) ◽  
pp. 2473011420S0038
Author(s):  
Huai M. Phen ◽  
Wesley J. Manz ◽  
Joel T. Greenshields ◽  
Danielle Mignemi ◽  
Jason T. Bariteau

Category: Other; Ankle Introduction/Purpose: Insertional Achilles tendinitis (IAT) is a common cause of chronic posterior heel pain. Non-operative treatment has demonstrated evidence of success, with similar failure rates in both the young and the elderly. Surgical management can reproducibly improve patients’ pain and functional status. Older patients are considered to be at a higher risk for surgical complications due to associated comorbidities when compared to patients under the age of 60. The aim of this study is to investigate the impact of comorbidities and peri-operative variables on functional patient reported outcomes following surgical treatment of IAT in those over and under the age of 60. Methods: Retrospective review of prospectively collected data pertaining to a consecutive series of adult patients who underwent surgical management of IAT by a single surgeon (J.B.). Patients were separated into those 60 years of age and younger, and those above 60. Patients undergoing concomitant surgical procedures or revisions were excluded. Patient demographics, co- morbidities, perioperative variables, and post-operative complications were collected. Visual Analogue Scale (VAS), Short Form Health Survey Physical Component Score (SF-36 PCS), wound infection, and recurrence were assessed with a minimum follow-up of 12 months. Statistics were obtained using linear regression mixed models, and chi-squared analysis. Results: 38 operative cases were identified including 17 patients over and 21 patients under 60 years of age (mean 66.8 +/- 5.1yrs, 49.1 +/- 8.4yrs, respectively). There were no significant differences in demographics, rates of co-morbidities, or post-operative infection between the two groups. Both young and elderly groups experienced improvements in mean VAS pain scores at 6 months (3.3 and 2.7, respectively, P = 0.416) and 12 months (5.0 and 4.1, respectively, P = 0.322) post-operatively. SF-36 PCS improvements were also observed in both young and elderly cohorts at 6 (mean 22.1 and 9.3, respectively, P = 0.122) and 12 months (mean 30.4 and 20.4, respectively, P = 0.158). Linear regression analysis showed no statistical difference between the presence of co-morbidities, or age, on clinical outcomes. Conclusion: None of the co-morbidities nor peri-operative variables assessed were linked to increased risk of failed surgical correction of IAT in elderly patients, suggesting surgical correction of IAT in geriatric populations is an appropriate and reproducible treatment option. Further higher-powered studies, with longer follow-up times would be of use to better elucidate the influence of co-morbidities on recurrence.


2019 ◽  
Vol 4 (4) ◽  
pp. 2473011419S0039
Author(s):  
Danica H. Smith ◽  
Michael F. McTague ◽  
Michael J. Weaver ◽  
Jeremy T. Smith

Category: General Health Introduction/Purpose: Smoking tobacco is a risk factor for impaired wound healing, infection, delayed fracture healing, and prolonged hospital stay. Smoking cessation prior to surgery has shown a 40% relative risk reduction in total perioperative complications. The primary purpose of this study is to evaluate the impact of preoperative smoking cessation on long-term smoking habits in patients undergoing elective lower extremity orthopaedic surgery. The secondary outcome is patient-reported effectiveness of smoking cessation method. Methods: A retrospective cohort study was performed by identifying all patients who were smokers that were required to quit and subsequently had a normal nicotine/cotinine serum test prior to lower extremity orthopaedic surgery. Attempts were made to contact all patients and administer a survey inquiring about demographics, medical history, smoking history, smoking cessation process, and current smoking status. Results: Of 36 eligible patients, 23 completed the survey. Eleven patients identified as current non-smokers (48%) at the time of survey follow-up (mean follow-up 55 months with a range of 12 to 88 months). Of these 11, 82% said they were very likely to continue to refrain from smoking. Twelve patients identified as current smokers at the time of survey, over half of whom ceased smoking for at least three months perioperatively. The reasons for resuming smoking were “stress” (45%), ”falling back into the habit” (37%), and due to “friends who smoke” (18%). The majority of smoking patients (92%) decreased the number of cigarettes they smoked regularly. The most effective smoking cessation techniques were ”cold turkey”, “non-nicotine medication”, and ”trans-dermal nicotine patches”. Conclusion: Elective surgery offers a unique opportunity for smoking cessation. Of 23 patients required to quit smoking prior to surgery, 48% maintained smoking cessation at least one year postoperatively. Of the 12 patients who relapsed, 55% stated that they did not resume smoking until at least three months postoperatively, suggesting that this particular period may be an important time for intensified smoking cessation counseling.


1992 ◽  
Vol 10 (2) ◽  
pp. 330-333 ◽  
Author(s):  
C Lerman ◽  
P Hanjani ◽  
C Caputo ◽  
S Miller ◽  
E Delmoor ◽  
...  

PURPOSE A randomized trial was conducted to evaluate the impact of a telephone counseling intervention to improve patient adherence to colposcopic examination for suspected cervical intraepithelial neoplasia (CIN). METHODS Subjects were lower-income, minority women who missed a scheduled initial appointment for colposcopy at an urban medical clinic. Patients were randomly assigned to either a control condition (n = 42) or a telephone counseling condition (n = 48). The 15-minute, structured telephone counseling intervention protocol addressed educational, psychosocial, and practical barriers to colposcopy adherence. RESULTS The most common patient-reported barriers to colposcopy adherence included a lack of understanding of the purpose of colposcopy (50%), worry about or fear of cancer (25%), and forgetting (23%). Telephone counseling was found to be highly effective in addressing these barriers and improving adherence to diagnostic follow-up and treatment. Of patients in the control condition, 43% complied with a rescheduled colposcopy appointment, compared with 67% in the telephone counseling condition. Logistic regression analysis indicated that the effect of telephone counseling was independent of sociodemographic confounder variables (odds ratio = 2.6; P less than .003). Additionally, 74% of patients who received the initial telephone counseling adhered to recommended treatment, compared with 53% of patients in the control condition. CONCLUSION Brief, structured telephone contact may be a cost-effective mechanism for improving adherence to diagnostic follow-up and treatment for a variety of cancer screening tests.


2020 ◽  
Vol 5 (4) ◽  
pp. 2473011420S0018
Author(s):  
Daniel J. Cunningham ◽  
John Steele ◽  
Samuel B. Adams

Category: Ankle Introduction/Purpose: Poor pre-operative mental health and depression have been shown to negatively impact patient- reported outcomes (PROMs) after a broad array of orthopaedic procedures involving the spine, hip, knee, shoulder, and hand. However, the relationship of mental health and patient-reported outcomes in foot and ankle surgery is less clear. The purpose of this study is to characterize the impact of pre-operative mental health and depression on patient-reported outcomes after total ankle arthroplasty. The study hypothesis is that depression and decreased SF36 MCS will be significantly associated with diminished improvement in PROMs after total ankle arthroplasty. Methods: All patients undergoing primary TAA between January 2007 and December 2016 who were enrolled into a prospective, observational study and who had at least 1 to 2-year minimum study follow-up were included. Patients were separated into 4 groups based on the presence or absence of SF36 MCS<35 and diagnosis of depression. Pre-operative to post- operative change scores in the SF36 physical and mental component summary scores (PCS and MCS), Short Musculoskeletal Function Assessment (SMFA) function and bother components, and visual analog scale (VAS) pain were calculated in 1 to 2-year follow-up. Multivariable, main effects linear regression models were constructed to evaluate the impact of SF36 and depression status on pre-operative to 1 to 2-year follow-up change scores with adjustment for age, sex, race, body mass index, current smoking, American Society of Anesthesiologist’s score, smoking, and Charlson-Deyo comorbidity score. Results: As in Table 1, adjusted analyses demonstrated that patients with MCS<35 and depression had significantly lower improvements in all change scores including SF36 MCS (-5.1 points) and PCS (-7.6 points), SMFA bother (6 points) and function scores (5.7 points), and VAS pain (7.5 points) compared with patients that had SF36>=35 and no depression. Patients with MCS<35 and no depression had significantly greater improvement in SF36 MCS (5.3 points) compared with patients that had MCS>=35 and no depression. Patients with MCS>=35 and depression had significantly lower improvement in SF36 MCS (-3.2 points) compared with patients that had MCS>=35 and no depression. Adjusted analyses of minimum 5-year outcomes demonstrated significantly increased improvement in MCS and SMFA function for patients with pre-operative MCS<35 and no depression. Conclusion: Presence of depression and decreased SF36 MCS are risk factors for diminished improvement in PROMs. Patients with depression and decreased MCS should be counseled about their risk of diminished improvement in outcomes compared to peers. As PROM’s become part of physician evaluations, it is becoming increasingly important to identify factors for diminished improvement outside of the physician’s control. [Table: see text]


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