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1.
Acta Orthop ; 93: 808-818, 2022 Oct 14.
Article in English | MEDLINE | ID: covidwho-2080026

ABSTRACT

BACKGROUND AND PURPOSE: During the first COVID-19 lockdown elective surgery was greatly reduced. Prioritization of patients with greater need and expected benefit in terms of quality of life was advised. The lockdown also potentially affected follow-up outcomes. Therefore, our study compared patient-reported outcome measures (PROMs) retrieved during the lockdown of Dutch primary total hip and knee arthroplasty (THA, TKA) patients with previous years. PATIENTS AND METHODS: We performed cross-sectional analyses using national data from the Dutch Orthopaedic Registry (LROI). All primary elective THA and TKA patients with preoperative or postoperative PROMs (EQ-5D-3L index, OHS/OKS) during the first COVID-19 lockdown between March and July 15, 2020 were included. Patients with PROMs during the same months in 2018 plus 2019 were used as control. Finally, 33,453 THA and 27,335 TKA patients were included. Patient characteristics were compared during versus before the lockdown. Subsequently, the lockdown effect on PROMs scores was analyzed with multivariable linear regression. RESULTS: During the COVID-19 lockdown, THA and TKA patients had a lower age and BMI preoperatively, and more often had surgery in private clinics. Both preoperative PROMs in THA patients, but not in TKA patients, were worse (EQ-5D: Adjusted mean difference (AMD) -0.021, p < 0.001) during the lockdown compared with prior years. Both postoperative PROMs in THA and TKA patients were better during the lockdown (12-month EQ-5D in THA: AMD 0.010, p = 0.003; and in TKA: AMD 0.013, p < 0.001). INTERPRETATION: During the COVID-19 lockdown, THA patients had slightly worse preoperative PROMs, suggesting selection of patients with greater urgency. Postoperative PROMs in both THA and TKA patients differed minimally. Overall, the observed differences were likely not clinically relevant.


Subject(s)
Arthroplasty, Replacement, Hip , Arthroplasty, Replacement, Knee , COVID-19 , COVID-19/epidemiology , Communicable Disease Control , Cross-Sectional Studies , Humans , Patient Reported Outcome Measures , Quality of Life
2.
Eur J Pain ; 26(8): 1746-1758, 2022 09.
Article in English | MEDLINE | ID: covidwho-2059384

ABSTRACT

BACKGROUND: For paediatric chronic pain patients, intensive interdisciplinary pain treatment (IIPT) is a well-established treatment. The treatment's short-term effectiveness can be improved by an additive psychosocial aftercare (PAC). However, neither the program's long-term effectiveness nor the patients in particular need have been investigated yet. METHODS: This study aimed at determining the long-term effects of PAC and detecting predictors of treatment outcome within a multicentre randomized controlled trial measured at five time points up to 12 months after discharge. At inpatient admission to IIPT, patients (N = 419, 14.3 years of age, 72.3% female) were randomly assigned to intervention or control group. After IIPT discharge, the intervention group received PAC, whereas the control group received treatment as usual (TAU). Patient-reported outcomes included pain and emotional characteristics. Clinicians assessed potential psychosocial risk factors and their prognosis of treatment outcome. Statistical analyses included mixed-models and univariable logistic regressions. RESULTS: Data at the 12-month follow-up (n = 288) showed a significant benefit of PAC compared with TAU; the majority (59.0%) of patients in the PAC-group reported no chronic pain compared to 29.2% of TAU-patients (p < 0.001). Patients with a single parent specifically benefited from PAC compared to TAU. Clinicians were able to make a reliable prognosis of treatment outcome, but did not successfully predict which patients would benefit the most from PAC. CONCLUSIONS: Study results suggest that PAC is highly effective irrespective of patient characteristics, but particularly for patients with single parents. Its broad implementation could help to improve the long-term outcomes of youth with severely disabling chronic pain. SIGNIFICANCE: A psychosocial aftercare following paediatric IIPT leads to significantly better pain and emotional outcomes compared to treatment as usual up to 12 months after discharge, especially for patients with single parents.


Subject(s)
Aftercare , Chronic Pain , Adolescent , Aged , Child , Chronic Pain/therapy , Emotions , Female , Humans , Male , Patient Reported Outcome Measures , Treatment Outcome
3.
Medicine (Baltimore) ; 101(31): e29639, 2022 Aug 05.
Article in English | MEDLINE | ID: covidwho-2051685

ABSTRACT

Telemedicine is proving to be a useful tool in the telemonitoring of respiratory patients and telerehabilitation programs. The use of telemedicine has been proposed by the main medical societies because of the limited resources and the healthcare workers infection risk in the Coronavirus Disease 2019 (COVID-19) pandemic. The aim of this pilot program is to evaluate the feasibility of COVID-19 telerehabilitation program from the hospital to the home with clinical, functional and patient satisfaction outcomes. Rehabilitation was initiated in the hospital by a physiotherapist and complemented by "Estoi" (a mobile application), which was continued at home with telemonitoring and messaging with the medical team. Patients' habitual use of smartphones was not queried for inclusion. Sixteen patients were consecutively enrolled, 47% women with a mean age of 63 years old. 50% of patients completed ≥15 rehabilitation sessions. In total, 88% of patients referred that the mobile application incentive them to do more physical therapy, and 63% would choose telerehabilitation instead of center-based rehabilitation for new rehabilitation programs. Patient satisfaction (0-10) for the mobile application was 8.4 and 8.9 for the telerehabilitation program. Beginning telerehabilitation in the hospital could increase the efficacy and efficiency of physical therapy, which is safe for patients and healthcare workers. Following at home, this telerehabilitation program seems to encourage and empower patients who have reported high satisfaction. Further randomized studies with larger numbers of patients and multicenter studies are required to evaluate these results.


Subject(s)
COVID-19 , Telerehabilitation , Female , Humans , Male , Middle Aged , Patient Reported Outcome Measures , Pilot Projects , Prospective Studies , Telerehabilitation/methods
4.
J Allergy Clin Immunol Pract ; 10(10): 2734-2741.e7, 2022 10.
Article in English | MEDLINE | ID: covidwho-2049379

ABSTRACT

BACKGROUND: Urticarial vasculitis (UV) is a rare and difficult-to-treat chronic skin disease defined by long-lasting urticarial lesions and the histopathologic finding of leukocytoclastic vasculitis. As of yet, little is known about UV patients' perspective on the disease. OBJECTIVE: To assess UV patients' perspective on the clinical course, treatment response, greatest challenges, and quality-of-life (QOL) impairment. METHODS: A web-based questionnaire was disseminated in a Facebook group of patients with UV. Patients with UV confirmed by skin biopsy were included. RESULTS: Patients with UV had a mean age of 47.3 ± 12.3 years and were mostly female (94.3%; n = 82 of 87). The median delay in diagnosis was 8.1 months (interquartile range, 2.0-46.3). Normocomplementemia and hypocomplementemia were present in 54.0% (n = 27) and 46.0% (n = 23) of 50 patients, respectively. Most patients with UV (51.8%; n = 43 of 83) reported severely decreased QOL due to their disease. Low QOL was also the most frequently reported greatest challenge for patients with UV (40.7%), followed by the long-standing course of UV with frequent relapses (14.8%). Low QOL correlated with long disease duration (r = 0.298; P = .02) and high numbers of clinical symptoms (r = 0.294; P = .007). Patients with UV with allergies, lung diseases, and chronic infections reported lower QOL. Patients with UV with low QOL were treated with analgesics, dapsone, montelukast, omalizumab, and colchicine more often than patients with UV with higher QOL (P < .05 for all). CONCLUSIONS: Our results show a considerable impairment in QOL in patients with UV associated with long disease duration, high symptom burden, and a high need for therapy. Improvement of the management of UV by further research is necessary.


Subject(s)
Urticaria , Vasculitis, Leukocytoclastic, Cutaneous , Adult , Colchicine , Dapsone/therapeutic use , Female , Humans , Male , Middle Aged , Omalizumab/therapeutic use , Patient Reported Outcome Measures , Quality of Life , Urticaria/diagnosis , Urticaria/drug therapy , Vasculitis, Leukocytoclastic, Cutaneous/diagnosis
5.
Int J Environ Res Public Health ; 19(18)2022 Sep 12.
Article in English | MEDLINE | ID: covidwho-2032949

ABSTRACT

The severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) virus is associated with a plethora of long-lasting symptoms (long-COVID). The presence of long-COVID symptoms causes decreased functionality. This study described the psychometric properties of the Functional Impairment Checklist (FIC), a disease-specific patient-reported outcome measure (PROM) used for evaluating the functional consequences of SARS in previously hospitalized COVID-19 survivors with long-COVID symptoms. The LONG-COVID-EXP-CM is a multicenter cohort study including patients hospitalized with COVID-19 during the first wave of the pandemic in five hospitals in Madrid. A total of 1969 (age: 61 ± 16 years, 46.4% women) COVID-19 survivors with long-COVID completed the FIC at a long-term follow-up after hospitalization (mean: 8.4 ± 1.5 months). Internal consistency (Cronbach alpha value), reliability (item-internal consistency, item-discriminant validity), construct validity (exploratory factor analysis), floor effect and ceiling effect were calculated. The mean time for fulfilling the FIC was 62 ± 11 s. The Cronbach's alpha values reflecting the internal consistency reliability were 0.864 for FIC-symptoms and 0.845 for FIC-disability. The correlation coefficient between the FIC-symptoms and FIC-disability scale was good (r: 0.676). The ceiling effect ranged from 2.29% to 9.02%, whereas the floor effect ranged from 38.56% to 80.19%. The exploratory factor analysis showed factor loadings from 0.514 to 0.866, supporting good construct validity. Women exhibited greater limitations in all physical symptoms and disability-related domains of the FIC compared with men (all, p < 0.001). Further, younger patients (those aged <45 years) self-reported lower physical symptoms and disability-related domains than older patients. In conclusion, this study indicates that the FIC has good psychometric properties to be used as a specific-disease PROM to measure function and disability in COVID-19 survivors with long-COVID.


Subject(s)
COVID-19 , Aged , COVID-19/complications , COVID-19/epidemiology , Checklist , Cohort Studies , Female , Hospitalization , Humans , Male , Middle Aged , Patient Reported Outcome Measures , Psychometrics , Reproducibility of Results , SARS-CoV-2 , Surveys and Questionnaires , Survivors
6.
Support Care Cancer ; 30(11): 9255-9266, 2022 Nov.
Article in English | MEDLINE | ID: covidwho-2007149

ABSTRACT

PURPOSE: To describe changes in physical performance and patient-reported outcomes in cancer survivors who participated in an exercise program as part of usual-care multidisciplinary rehabilitation and the influence of training adaptations during the coronavirus-19 (COVID-19) pandemic. METHODS: In an observational cohort study, cancer survivors underwent usual-care multidisciplinary rehabilitation including a 10-week exercise program. During the COVID-19 pandemic, the exercise program was adapted with reduced training time and frequency. Mean changes and 95% confidence intervals in physical performance (peak oxygen uptake (VO2peak), peak work rate during a steep ramp test (SRT-WRpeak), 6-min walking distance, muscle strength) and patient-reported outcomes (health-related quality of life, fatigue, anxiety, and depression) were assessed between the start and the end of the exercise program. Linear regression analysis, adjusting for baseline levels of outcomes, was used to investigate differences in changes in outcomes between participants who underwent the original and the adapted program. RESULTS: All outcomes statistically significantly improved over time, regardless of adaptations in the exercise program. VO2peak increased with 9.6% and 7.7% in the original and adapted program, respectively. Significant smaller improvements were observed in SRT-WRpeak (- 3.9%) and upper body muscle strength (- 10.8%) after participation in the adapted compared to the original program. No significant between-group differences were observed for other outcomes. CONCLUSION: Physical performance and patient-reported outcomes statistically and clinically significantly improved in cancer survivors who participated in an exercise program as part of usual-care multidisciplinary rehabilitation. Improvements of performance outcomes were smaller since the training adaptations, though only significant for SRT-WRpeak and upper body strength.


Subject(s)
COVID-19 , Cancer Survivors , Neoplasms , Humans , Quality of Life , Pandemics , Exercise , Physical Functional Performance , Patient Reported Outcome Measures , Exercise Therapy , Neoplasms/rehabilitation
7.
Curr Oncol ; 29(8): 5919-5932, 2022 08 20.
Article in English | MEDLINE | ID: covidwho-1997533

ABSTRACT

PURPOSE: To evaluate and quantify potential sociodemographic disparities in breast cancer screening, diagnosis, and treatment due to the COVID-19 pandemic, and the use of telemedicine. METHODS: We fielded a 52-item web-based questionnaire from 14 May 2020 to 1 July 2020 in partnership with several U.S.-based breast cancer advocacy groups. Individuals aged 18 or older were eligible for this study if they: (1) received routine breast cancer screening; OR (2) were undergoing diagnostic evaluation for breast cancer; OR (3) had ever been diagnosed with breast cancer. We used descriptive statistics to understand the extent of cancer care delay and telemedicine adoption and used multivariable logistic regression models to estimate the association of sociodemographic factors with odds of COVID-19-related delays in care and telemedicine use. RESULTS: Of 554 eligible survey participants, 493 provided complete data on demographic and socioeconomic factors and were included in the analysis. Approximately half (n = 248, 50.3%) had a personal history of breast cancer. Overall, 188 (38.1%) participants had experienced any COVID-19-related delay in care including screening, diagnosis, or treatment, and 339 (68.8) reported having at least one virtual appointment during the study period. Compared to other insurance types, participants with Medicaid insurance were 2.58 times more likely to report a COVID-19-related delay in care (OR 2.58, 95% Cl: 1.05, 6.32; p = 0.039). Compared to participants with a household income of less than USD 50,000, those with a household income of USD 150,000 or more were 2.38 (OR 2.38, 95% Cl: 1.09, 5.17; p = 0.029) times more likely to adopt virtual appointments. Self-insured participants were 70% less likely to use virtual appointment compared to those in other insurance categories (OR 0.28, 95% Cl: 0.11, 0.73; p = 0.009). CONCLUSIONS: The COVID-19 pandemic has had a significant impact on breast cancer screening, diagnosis, and treatment, and accelerated the delivery of virtual care. Lower-income groups and patients with certain insurance categories such as Medicaid or self-insured could be more likely to experience care delay or less likely to use telemedicine. Careful attention must be paid to vulnerable groups to insure equity in breast cancer-related service utilization and telemedicine access during and beyond the COVID-19 pandemic.


Subject(s)
Breast Neoplasms , COVID-19 , Telemedicine , Breast Neoplasms/diagnosis , Breast Neoplasms/therapy , COVID-19 Testing , Early Detection of Cancer , Female , Humans , Pandemics , Patient Reported Outcome Measures , Time-to-Treatment , United States
8.
PLoS One ; 17(8): e0272609, 2022.
Article in English | MEDLINE | ID: covidwho-1978858

ABSTRACT

BACKGROUND: There has been a substantial decline in in-person care in inpatient and outpatient settings during the ongoing COVID-19 pandemic. Avoidance of needed in-person care may contribute to an avoidable decline in patient health and an increase in mortality. While several systems and behavioral theories have been put forward to explain the decline, there is a lack of studies informed by patients' own experiences. The current study applied a socio-ecological model encompassing patient, environmental, and institutional-related variables to examine patient-reported factors associated with avoidance of in-person care. METHODS: Between October and December 2020, a total of 3840 persons responded to a nationwide online questionnaire that was administered using ResearchMatch and Facebook. Self-reported avoidance of in-person care among those who needed it was the main outcome. Multivariable logistic regression analysis was used to identify factors associated with avoidance of needed care. FINDINGS: Out of a total of 3372 respondents who reported that they needed in-person care during the early phase of the pandemic, 257 (7.6%) avoided it. Patient-related variables associated with avoiding needed care included younger age (odds ratio (OR), 1.46, 95% CI 1.11 to 1.94, p<0.01; <45 y/o vs 45+), inability to afford care (OR = 1.65, 95% CI 1.17 to 2.34, p<0.01), and greater COVID-related stress (OR = 1.36, CI 1.01 to 1.83, p<0.05). More frequent discussions about COVID with family and friends was the only significant environment-related avoidance of care variable (OR = 1.39, 95% CI 1.01-1.91, p < .05). Institution-related care avoidance variables included a negative patient healthcare experience rating (OR 1.83, 95% CI 1.38 to 2.42, p<0.001), poor awareness of the institution's safety protocol (OR = 1.79, 95% CI 1.28 to 2.51, p<0.01), and low ratings of the institution's effectiveness in communicating their safety protocol (OR = 3.45, 95% CI 1.94 to 6.12, p<0.001). The final model predicted 11.9% of the variance in care avoidance. CONCLUSIONS: These results suggest that care avoidance of in-person care during the initial phase of the pandemic was influenced by a patient's demographics as well as environmental and healthcare institutional factors. Patients' previous experiences and their awareness of healthcare systems' safety protocols are important factors in care avoidance.


Subject(s)
COVID-19 , COVID-19/epidemiology , Humans , Inpatients , Pandemics , Patient Reported Outcome Measures
9.
BMC Cancer ; 22(1): 726, 2022 Jul 02.
Article in English | MEDLINE | ID: covidwho-1974122

ABSTRACT

BACKGROUND: Ovarian cancer patients require monitoring for relapse. Innovative follow-up methods are increasingly being explored. An electronic patient-reported outcome (ePRO) follow-up pathway was developed for women treated for ovarian cancer. This feasibility study explored patient acceptability and compliance. METHODS: A single-arm non-blinded prospective feasibility study was undertaken at two hospitals. Participants were women who had completed treatment for ovarian cancer whose clinician was happy for them to be monitored remotely. Automated 3-monthly reminders were sent to participants to complete an ePRO questionnaire and obtain blood tests. Participants were reviewed over the phone by their clinical nurse specialist instead of attending clinic-based follow-up. The primary outcome was compliance (expected ePRO completions/blood tests) across the 12-month study period. Secondary outcomes were recruitment, attrition, resource use, symptom severity/alerts and patient acceptability. RESULTS: Twenty-four women consented (50% consent rate), and 13 remained on study at 12 months. Seven women relapsed, 3 chose to withdraw, and 1 withdrew for other clinical reasons. ePRO compliance was high and consistent at 75-82%, although the two hospitals differed. Adherence to the clinical protocol was evident for blood tests and contacts with staff (fewer visits, more phonecalls compared to an earlier audit). End-of-study feedback indicated high patient satisfaction. CONCLUSIONS: Remote ePRO follow-up for ovarian cancer is feasible and acceptable to patients who are able and willing to participate. However, the low recruitment rate (ineligible + declined) indicate it is not suitable/acceptable to all patients immediately post-treatment. Further large-scale research and implementation work is required, especially in a post-COVID era. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT02847715 (first registered 19/05/2016).


Subject(s)
Ovarian Neoplasms , Carcinoma, Ovarian Epithelial , Electronics , Feasibility Studies , Female , Follow-Up Studies , Humans , Neoplasm Recurrence, Local , Ovarian Neoplasms/diagnosis , Ovarian Neoplasms/therapy , Patient Reported Outcome Measures , Prospective Studies
10.
BMC Oral Health ; 22(1): 310, 2022 Jul 27.
Article in English | MEDLINE | ID: covidwho-1962806

ABSTRACT

BACKGROUND: Globally, with the COVID-19 pandemic, dental services were limited to emergency/ urgent conditions and were provided only after tele-triage referral for face-to-face management. However, no previous research explored whether the pain severity (PS) drives the tele-triage decisions. The current study examined the association between PS and tele-triage decision of whether to manage the condition remotely or refer the caller for face-to-face management. METHODS: This retrospective cross-sectional study analyzed the PS reported by hotline callers, using numerical rating scale (NRS-11), during the first wave of COVID-19 lockdown (23 March-31 August 2020) and its association with tele-triage decision controlling for age, sex, history of chronic illness, and dental discipline needed. Binomial logistic regression assessed the association between the PS (exposure) and tele-triage decision (outcome). ANOVA compared PS across tele-triage categories, dental history and tentative diagnosis. RESULTS: PS was significantly associated with tele-triage decisions (p < 0.05). An increase in pain score by 1 unit was associated with 1.4 times increased odds of face-face referral (95% CI: 1.26-1.54). Pediatric/ adolescent patients (9-18 years) (odds ratio (OR) = 2.07; 95% CI: 1.07-4.02), history of chronic illness (OR = 2.12; 95% CI:1.28-3.51), need for surgical specialty (OR = 1.93; 95% CI: 1.22-3.04) and orthodontic specialty (OR = 7.02; 95% CI: 3.54-13.87) were independently associated with tele-triage decision. PS was highest for the emergency triage category (8.00 ± 2.83, P < 0.0001), dental history of tooth with cavity or filling (6.65 ± 2.024, P < 0.0001), and the tentative tele-diagnosis of cellulitis (7.75 ± 2.872, P < 0.0001). CONCLUSIONS: During COVID-19 pandemic, tele-triage decisions were significantly influenced by patient-reported PS, adjusting for a range of variables. Despite this, referral for face-to-face management was individualized and driven by the tripartite considerations of the reported pain, clinical judgement, and the high transmission characteristics of COVID-19.


Subject(s)
COVID-19 , Triage , Adolescent , Child , Communicable Disease Control , Cross-Sectional Studies , Humans , Pain , Pain Measurement , Pandemics , Patient Reported Outcome Measures , Retrospective Studies
11.
JAMA Otolaryngol Head Neck Surg ; 148(4): 333-341, 2022 04 01.
Article in English | MEDLINE | ID: covidwho-1955879

ABSTRACT

IMPORTANCE: Patients with head and neck cancer manage a variety of symptoms at home on an outpatient basis. Clinician review alone often leaves patient symptoms undetected and untreated. Standardized symptom assessment using patient-reported outcomes (PROs) has been shown in randomized clinical trials to improve symptom detection and overall survival, although translation into real-world settings remains a challenge. OBJECTIVE: To better understand how patients with head and neck cancer cope with cancer-related symptoms and to examine their perspectives on standardized symptom assessment. DESIGN, PARTICIPANTS, AND SETTING: This was a qualitative analysis using semistructured interviews of patients with head and neck cancer and their caregivers from November 2, 2020, to April 16, 2021, at a regional tertiary center in Canada. Purposive sampling was used to recruit a varied group of participants (cancer subsite, treatment received, sociodemographic factors). Drawing on the Supportive Care Framework, a thematic approach was used to analyze the data. Data analysis was performed from November 2, 2020, to August 2, 2021. MAIN OUTCOMES AND MEASURES: Patient perception of ambulatory symptom management and standardized symptom assessment. RESULTS: Among 20 participants (median [range] age, 59.5 [33-74] years; 9 [45%] female; 13 [65%] White individuals), 4 themes were identified: (1) timely physical symptom management, (2) information as a tool for symptom management, (3) barriers to psychosocial support, and (4) external factors magnifying symptom burden. Participants' perceptions of standardized symptom assessment varied. Some individuals described the symptom monitoring process as facilitating self-reflection and symptom detection. Others felt disempowered by the process, particularly when symptom scores were inconsistently reviewed or acted on. CONCLUSIONS AND RELEVANCE: This qualitative analysis provides a novel description of head and neck cancer symptom management from the patient perspective. The 4 identified themes and accompanying recommendations serve as guides for enhanced symptom monitoring.


Subject(s)
Head and Neck Neoplasms , Outpatients , Adult , Aged , Female , Head and Neck Neoplasms/diagnosis , Head and Neck Neoplasms/therapy , Humans , Male , Middle Aged , Palliative Care , Patient Reported Outcome Measures , Symptom Assessment
12.
BMJ Qual Saf ; 31(8): 599-608, 2022 08.
Article in English | MEDLINE | ID: covidwho-1950205

ABSTRACT

BACKGROUND: Patient-reported measures attempt to quantify the value health services provide to users. Satisfaction is a common summative measure, but often has limited utility in identifying poor quality care. We compared satisfaction and the net promoter score (NPS), which was developed to help businesses quantify consumer sentiment, in a nationally representative survey in Peru. We aimed to compare NPS and satisfaction as individual ratings of care, assess the relationship of patient-reported experience ratings to these outcome measures and consider the utility of these measures as indicators of facility performance based on reliability within facilities and capacity to discriminate between facilities. METHODS: We analysed the 2016 National Survey on User Satisfaction of Health Services, a cross-sectional outpatient exit survey. We assessed ratings by patient characteristics and compared the distributions of satisfaction and NPS categories. We tested the association of patient-reported experience measures with each outcome using multilevel ordinal logistic regression. We used intraclass correlation (ICC) from these models to predict minimum sample for reliable assessment and compared patient-reported experience measures in facilities with average satisfaction but below or above average NPS. RESULTS: 13 434 individuals rated services at 184 facilities. Satisfaction (74% satisfied) and NPS (17% reported at least 9 out of 10) were largely concordant within individuals but weakly correlated (0.37). Ratings varied by individual factors such as age and visit purpose. Most domains of patient-reported experience were associated with both outcomes. Adjusted ICC was higher for NPS (0.26 vs 0.11), requiring a minimum of 7 (vs 20) respondents for adequate reliability. Within the 70% of facilities classified as average based on satisfaction, NPS-based classification revealed systematic differences in patient-reported experience measures. CONCLUSION: While satisfaction and NPS were broadly similar at an individual level, this evidence suggests NPS may be useful for benchmarking facility performance as part of national efforts in Peru and throughout Latin America to identify deficits in health service quality.


Subject(s)
Patient Satisfaction , Personal Satisfaction , Cross-Sectional Studies , Humans , Patient Reported Outcome Measures , Peru , Reproducibility of Results , Surveys and Questionnaires
13.
Patient ; 15(6): 703-713, 2022 11.
Article in English | MEDLINE | ID: covidwho-1943544

ABSTRACT

BACKGROUND AND OBJECTIVE: Patients experience a wide range of signs, symptoms, and impacts related to coronavirus disease 2019 (COVID-19). A patient-reported outcome (PRO) item bank that measures the most relevant patient experiences is needed to fully evaluate treatment benefit in COVID-19 clinical trials. METHODS: A review of the literature and social media informed a novel PRO item bank of COVID-19 signs, symptoms, and impacts and general pandemic impacts. Twenty 1:1 concept elicitation and cognitive debriefing interviews were conducted with adults in the US who had symptomatic COVID-19. A conceptual model was developed and the PRO item bank refined following interviews. RESULTS: A heterogenous set of signs, symptoms, and impacts of COVID-19, as well as impacts associated with the pandemic overall, was identified. Fifty-five short-term and long-term signs and symptom items, 26 items assessing disease-related impacts, and seven items evaluating pandemic-related impacts are included in the item bank. CONCLUSIONS: The novel and preliminarily content-valid IQVIA COVID-19 Daily Diary Item Bank© and the IQVIA COVID-19 Weekly Diary Item Bank© were developed to measure signs and symptoms, their associated severity, and disease-related and pandemic-related impacts. The items are arranged in seven groups and can be individually selected based on research needs.


Subject(s)
COVID-19 , Patient Reported Outcome Measures , Adult , Humans , Quality of Life/psychology , Surveys and Questionnaires
14.
J Investig Med ; 70(5): 1316-1319, 2022 06.
Article in English | MEDLINE | ID: covidwho-1909801

ABSTRACT

Patients with sickle cell disease (SCD) experience a range of clinical symptoms, including acute and chronic pain, fatigue, and respiratory problems, as well as chronic organ complications that can lead to disability and accelerated mortality. Voxelotor is a first-in-class therapy that targets sickle hemoglobin polymerization, the root cause of SCD. It is approved by the US Food and Drug Administration for treatment of SCD in patients aged 4 years and older and in the European Union and United Arab Emirates for the treatment of SCD in patients aged 12 years and older. Here, we report the single-center experience of both clinician-determined and patient-reported benefits of voxelotor in 27 consecutive patients treated for at least 8 weeks. Clinical Global Impression of Change and Patient Global Impression of Change rating scales were used to capture clinicians' and patients' perceptions of change in overall patient health-related quality-of-life with voxelotor treatment. Laboratory data were also collected to assess clinical response to treatment. As observed in previous clinical studies, hemoglobin concentrations and markers of hemolysis were improved in patients treated with voxelotor. Most patients reported marked improvement in disease symptoms, which correlated well with the clinicians' assessments. Although limited by the retrospective open-label study design, these findings suggest that voxelotor use has a positive impact on outcomes in patients with SCD.


Subject(s)
Anemia, Sickle Cell , Benzaldehydes , Pyrazines , Pyrazoles , Anemia, Sickle Cell/drug therapy , Benzaldehydes/therapeutic use , Hemoglobin, Sickle , Humans , Patient Reported Outcome Measures , Pyrazines/therapeutic use , Pyrazoles/therapeutic use , Quality of Life , Retrospective Studies
15.
Support Care Cancer ; 30(9): 7535-7544, 2022 Sep.
Article in English | MEDLINE | ID: covidwho-1877841

ABSTRACT

Prior to the COVID-19 pandemic, patients attending ambulatory clinics at cancer centers in Ontario completed the Edmonton Symptom Assessment Scale (ESAS) at each visit. At our center, completion was via touchpad, with assistance from clinic volunteers. As of March 2020, clinic appointments were conducted virtually when possible and touch pads removed. We anticipated a negative impact on the collection of patient-reported outcomes (PROs) and the recognition of severe symptoms. METHODS: We performed a prospective cross-sectional cohort study to investigate remote ESAS completion by patients with appointments at a weekly surgical oncology clinic. Patients in the initial study cohort were asked to complete and return the ESAS virtually (V). Given low completion rates, the ensuing cohort was asked to complete a hard-copy (HC) ESAS. For the final cohort, we provided remote, personal mentorship by a member of the care team to support virtual electronic ESAS completion (virtual-mentored (VM) cohort). RESULTS: Between May and July 2020, a total of 174 patient encounters were included in the study. For the V cohort, 20/46 patients (44%) successfully completed and returned the electronic ESAS, compared to 49/50 (98%) for the HC cohort. For the VM cohort, the overall completion rate was 74% (58/78); however, 12 of these 58 patients did not independently complete a virtual ESAS. Virtual questionnaire completion was not predicted by age, sex, or tumor site, although patients who completed the ESAS were more likely to be in active management rather than surveillance (p = 0.04). Of all completed forms, 42% revealed a depression score of ≥2, and 27% an anxiety score of ≥4. CONCLUSIONS: We identified significant barriers to the virtual completion of ESAS forms, with a lack of predictive variables. The severe degree of psychological distress reported by ~50% of respondents demonstrates the need for ongoing regular collection/review of these data. Innovative solutions are required to overcome barriers to the virtual collection of PROs.


Subject(s)
COVID-19 , Neoplasms , Cross-Sectional Studies , Humans , Neoplasms/psychology , Pandemics , Patient Reported Outcome Measures , Prospective Studies , Symptom Assessment
16.
Dan Med J ; 69(6)2022 May 19.
Article in English | MEDLINE | ID: covidwho-1876980

ABSTRACT

INTRODUCTION: The coronavirus outbreak causes postponement of elective surgery. We evaluated how pain, function and general health were impacted by postponing elective knee and hip arthroplasty in patients with knee and hip osteoarthritis with no known surgery rescheduling date due to the coronavirus outbreak. METHODS: This study included 194 patients from a Danish public hospital with postponed elective primary knee or hip arthroplasty due to the lockdown. Patients responded to questionnaires when their surgery was cancelled and before surgery. Changes in pain and function were evaluated with the Oxford Knee and Hip Scores (OKS, OHS) and their general health with the EuroQol 5-dimension scale (EQ5D). Additionally, we asked about the patients' concerns and whether they felt improved, unchanged or deteriorated during the waiting period. RESULTS: Complete data were obtained for 110 (57%) patients, 59 and 51 awaiting knee or hip arthroplasty (median age 71 years, 62% were female), respectively. Arthroplasty was postponed for a median (range) 98 (63-161) days. A total of 34% were concerned that the postponement would lead to a poorer outcome. Mean OKS and OHS differences were 0 (95% confidence interval (CI): -1-1) and -1 (95% CI: -2-0) from surgery cancellation to re-scheduled surgery. The mean EQ5D index difference was 0.0 (95% CI: 0.0-0.1) for both groups. A total of 75 (68%) patients felt an important deterioration of their condition. CONCLUSIONS: Pre-operatively, patients worried about experiencing an altered treatment outcome due to postponed surgery and felt that their condition had deteriorated during the waiting period although this was not reflected in patient-reported outcome measures. FUNDING: Department of Orthopaedic Surgery. TRIAL REGISTRATION: not relevant.


Subject(s)
Arthroplasty, Replacement, Hip , Arthroplasty, Replacement, Knee , Osteoarthritis, Hip , Aged , Female , Humans , Male , Osteoarthritis, Hip/surgery , Pain , Patient Reported Outcome Measures
17.
World Neurosurg ; 160: e608-e615, 2022 04.
Article in English | MEDLINE | ID: covidwho-1867895

ABSTRACT

BACKGROUND: Patient-reported outcome measures (PROMs) are traditionally used to track recovery of patients after spine surgery. Wearable accelerometers have adjunctive value because of the continuous, granular, and objective data they provide. We conducted a prospective study of lumbar laminectomy patients to determine if time-series data from wearable accelerometers could delineate phases of recovery and compare accelerometry data to PROMs during recovery tracking. METHODS: Patients with lumbar stenosis for whom lumbar laminectomy was indicated were prospectively recruited. Subjects wore accelerometers that recorded their daily step counts from at least 1 week preoperatively to 6 months postoperatively. Subjects completed the Oswestry Disability Index and the 12-Item Short Form Health Survey preoperatively and at 2 weeks, 1 month, 3 months, and 6 months postoperatively. Daily aggregate median steps and individual visit-specific median steps were calculated. The Pruned Linear Exact Time method was used to segment aggregate median steps into distinct phases. Associations between visit-specific median steps and PROMs were identified using Spearman rank correlation. RESULTS: Segmentation analysis revealed 3 distinct postoperative phases: step counts rapidly increased for the first 40 days postoperatively (acute healing), then gained more slowly for the next 90 days (recovery), and finally plateaued at preoperative levels (stabilization). Visit-specific median steps were significantly correlated with PROMs throughout the postoperative period. PROMs significantly exceeded baseline at 6 months postoperatively, while step counts did not (all P < 0.05). CONCLUSIONS: Continuous data from accelerometers allowed for identification of 3 distinct stages of postoperative recovery after lumbar laminectomy. PROMs remain necessary to capture subjective elements of recovery.


Subject(s)
Laminectomy , Spinal Stenosis , Accelerometry , Humans , Laminectomy/methods , Lumbar Vertebrae/surgery , Patient Reported Outcome Measures , Prospective Studies , Spinal Stenosis/surgery , Treatment Outcome
18.
J Med Imaging Radiat Sci ; 53(3): 328-333, 2022 Sep.
Article in English | MEDLINE | ID: covidwho-1867397

ABSTRACT

INTRODUCTION: The use of Patient-Reported Outcomes (PROs) is an important part of care for patients receiving radiation therapy. Established processes for patients to complete symptom screening using PROs were disrupted by the COVID-19 pandemic. This study reports the implementation of a Radiation Therapist led "champion" model to support the use of PROs during the COVID-19 pandemic. METHODS: Patient charts were audited May 3 to May 22, 2020 to measure the initial impact of the pandemic on weekly completion rates of PROs for patients receiving active radiation treatment. Beginning May 25, 2020, two Radiation Therapists acted as champions to promote the use of PROs among patients and staff. Weekly completion rates of PROs were monitored from May 25, 2020 to May 28, 2021. The type of Patient Reported Outcome Measure (PROM) utilized and treatment intent was also recorded. RESULTS: After implementing the champion model, the weekly completion of PROs increased to an average of 47.0 ± 11.7 (47.5 ± 12.6%) from the initial baseline average of 8.7 ± 1.5 (9.4 ± 2.1%). For PROs completed, the distribution of PROMs was an average of 37.2 ± 9.6 (47.7 ± 12.7%) and 9.8 ± 3.5 (47.0 ± 16.9%) for the Revised Edmonton Symptom Assessment Scale (ESAS-r) and the Expanded Prostate Cancer Index Composite (EPIC) respectively. An average of 5.1 ± 2.9 (26.3 ± 12.7%) and 41.9 ± 10.1 (52.4 ± 14.1%) was recorded for palliative and curative intent respectively. DISCUSSION: An increased number of PROs were completed after implementing the Radiation Therapist led champion model. Patients receiving a radical course of treatment more frequently completed PROs, which in part reflects the longer treatment courses with increased opportunity for PROs to be completed. CONCLUSION: The Radiation Therapist led champion model supported ongoing monitoring and completion of PROs during the COVID-19 pandemic and has now been integrated into the department's standard clinical practice.


Subject(s)
COVID-19 , Pandemics , Humans , Male , Palliative Care , Patient Reported Outcome Measures
19.
J Telemed Telecare ; 28(6): 391-403, 2022 Jul.
Article in English | MEDLINE | ID: covidwho-1861765

ABSTRACT

INTRODUCTION: Telemedicine is the delivery of healthcare across a distance using some form of communication technology. The COVID-19 pandemic has led to increased adoption of telemedicine with national orthopaedic governing bodies advocating its use, as evidence suggests that social distancing maybe necessary until 2022. This systematic review aims to explore evidence for telemedicine in orthopaedics to determine its advantages, validity, effectiveness and utilisation. METHODS: Databases of PubMed, Web of Science, Scopus and CINAHL were systematically searched and articles were included if they involved any form of telephone or video consultation in an orthopaedic population. Findings were synthesised into four themes: patient/clinician satisfaction, accuracy and validity of examination, safety and patient outcomes and cost effectiveness. Quality assessment was undertaken using Cochrane and Joanna Briggs Institute appraisal tools. RESULTS: Twenty-one studies were included consisting of nine randomised controlled trials (RCTs). Studies revealed high patient satisfaction with telemedicine for convenience, less waiting and travelling time. Telemedicine was cost effective particularly if patients had to travel long distances, required hospital transport or time off work. No clinically significant differences were found in patient examination nor measurement of patient-reported outcome measures. Telemedicine was reported to be a safe method of consultation. DISCUSSION: Evidence suggests that telemedicine in orthopaedics can be safe, cost effective, valid in clinical assessment and with high patient/clinician satisfaction. However, more high-quality RCTs are required to elucidate long-term outcomes. This systematic review presents up-to-date evidence on the use of telemedicine and provides data for organisations considering its use during the COVID-19 pandemic and beyond.


Subject(s)
COVID-19 , Orthopedics , Telemedicine , COVID-19/epidemiology , Humans , Patient Reported Outcome Measures , Patient Satisfaction , Telemedicine/methods
20.
J Med Virol ; 94(9): 4253-4264, 2022 09.
Article in English | MEDLINE | ID: covidwho-1858870

ABSTRACT

BACKGROUND: The C19-YRS is the literature's first condition-specific, validated scale for patient assessment and monitoring in Post-COVID-19 syndrome (PCS). The 22-item scale's subscales (scores) are symptom severity (0-100), functional disability (0-50), additional symptoms (0-60), and overall health (0-10). OBJECTIVES: This study aimed to test the scale's psychometric properties using Rasch analysis and modify the scale based on analysis findings, emerging information on essential PCS symptoms, and feedback from a working group of patients and professionals. METHODS: Data from 370 PCS patients were assessed using a Rasch Measurement Theory framework to test model fit, local dependency, response category functioning, differential item functioning, targeting, reliability, and unidimensionality. The working group undertook iterative changes to the scale based on the psychometric results and including essential symptoms. RESULTS: Symptom severity and functional disability subscales showed good targeting and reliability. Post hoc rescoring suggested that a 4-point response category structure would be more appropriate than an 11-point response for both subscales. Symptoms with binary responses were placed in the other symptoms subscale. The overall health single-item subscale remained unchanged. CONCLUSION: A 17-item C19-YRSm was developed with subscales (scores): symptom severity (0-30), functional disability (0-15), other symptoms (0-25), and overall health (0-10).


Subject(s)
COVID-19 , COVID-19/complications , COVID-19/diagnosis , Humans , Patient Reported Outcome Measures , Reproducibility of Results , Surveys and Questionnaires
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