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1.
J Cancer Surviv ; 2024 Aug 16.
Artículo en Inglés | MEDLINE | ID: mdl-39147941

RESUMEN

PURPOSE: The Assessment of Burden of ColoRectal Cancer (ABCRC)-tool is a unique tool that includes a PROM focused on health-related quality of life (HRQoL), functional outcomes and lifestyle assessment. Furthermore, it provides visualization of results and treatment advice. The tool aims to support follow-up consultations of colorectal cancer (CRC) patients. The purpose of this study was to evaluate the first experiences of patients and healthcare professionals (HCPs) with the ABCRC-tool. METHODS: The ABCRC-tool was implemented in two Dutch hospitals and used by 25 patients and 5 HCPs during follow-up care. Consultations were audio-recorded and their content was analyzed independently by two researchers. Semi-structured interviews with patients and HCPs were conducted after the consultation. Interviews focused on the overall experience with the tool, ease of use, interpretation of the PROM and the visualized results and on the added value of the tool. RESULTS: Audio recording revealed that multiple topics, relevant to patients, were discussed during consultations with the ABCRC-tool. Patients and HCPs appreciated the ABCRC-tool as it added structure to the consultation, was helpful in the preparation of consultations and provided useful and convenient treatment options. The tool was easy to use, and the visualization was clear and informative. HCPs suggested that the tool is likely to be most relevant for patients in the first year of follow-up. CONCLUSIONS: This study implies that the ABCRC-tool is of added value for patients and their HCPs. Future research should focus on the evaluation of broad implementation, across a wide range of CRC patients. IMPLICATIONS FOR CANCER SURVIVORS: The ABCRC-tool is a valid tool to support CRC survivors and HCPs to monitor and visualize experienced burden of disease and lifestyle parameters in order to optimize personalized care.

2.
Palliat Med Rep ; 5(1): 194-200, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39050775

RESUMEN

Background: The overall level of physical and psychological symptom burden of advanced cancer patients (ACP) in an outpatient setting is notoriously difficult to assess. Therefore, more efficient and objective assessment is needed to accomplish this important task. Objectives: The aim of this study was to compare the physical and psychological symptom burden rated by palliative care nurse (PCN) versus patient's self-rating. Design: This retrospective German cohort study analyzed symptom burden using an electronic patient-reported outcome measure (ePROM). After referral to an outpatient specialized palliative care team, a PCN assessed the patient's symptoms both up to three months before initial presentation (IP) and at IP.Group differences were identified using analyses of variance (ANOVA). Further descriptive analysis of patient characteristics was used. Subjects: The study enrolled 164 ACP who were referred to a specialized palliative care (SPC) team. Mean age was 62 (± 12.6) years. Gastrointestinal (n = 46; 28.0%), lung (n = 32; 19.5%), and breast cancer (n = 34; 20.7%) were the most common entities. Results: Most frequent reasons for referral were pain (n = 55; 33.5%) and social care problems (n = 36; 22.0%). Patients reported significantly higher grades on depression (n = 144; Z = -2.8, p = 0.005), anxiety (n = 144; Z = -2.376, p = 0.018), and worsened general condition (n = 139; Z = -7.005, p < 0.001). Conclusion: ACP in an outpatient setting were more frequently referred to SPC for pain management and assistance with social problems with regard to the cancer and its limitations. Psychological distress was underrated by the PCN in comparison with patient self-reporting through ePROM. This underlines the importance of self-reported outcome measurement.

3.
BMC Prim Care ; 25(1): 206, 2024 Jun 10.
Artículo en Inglés | MEDLINE | ID: mdl-38858619

RESUMEN

BACKGROUND: Measuring treatment burden is important for the effective management of Type 2 Diabetes Mellitus (T2DM) care. The purpose of this systematic review was to identify the most robust approach for measuring treatment burden in people with T2DM based on existing evidence. METHODS: Articles from seven databases were retrieved. Qualitative, quantitative, and mixed-methods studies examining treatment burden in adults with T2DM and/or reporting relevant experiences were included. A convergent segregated approach with a mixed-methods design of systematic review was employed, creating a measurement framework in a narrative review for consistent critical appraisal. The quality of included studies was assessed using the Joanna Briggs Institute tool. The measurement properties of the instruments were evaluated using the Consensus based Standards for selection of Health Measurement Instruments (COSMIN) checklist. RESULTS: A total of 21,584 records were screened, and 26 articles were included, comprising 11 quantitative, 11 qualitative, and 4 mixed-methods studies. A thematic analysis of qualitative data extracted from the included articles summarised a measurement framework encompassing seven core and six associated measurements. The core measurements, including financial, medication, administrative, lifestyle, healthcare, time/travel, and medical information burdens, directly reflect the constructs pertinent to the treatment burden of T2DM. In contrast, the associated measurement themes do not directly reflect the burdens or are less substantiated by current evidence. The results of the COSMIN checklist evaluation demonstrated that the Patient Experience with Treatment and Self-management (PETS), Treatment Burden Questionnaire (TBQ), and Multimorbidity Treatment Burden Questionnaire (MTBQ) have robust instrument development processes. These three instruments, with the highest total counts combining the number of themes covered and "positive" ratings in COSMIN evaluation, were in the top tertile stratification, demonstrating superior applicability for measuring T2DM treatment burden. CONCLUSIONS: This systematic review provides evidence for the currently superior option of measuring treatment burden in people with T2DM. It also revealed that most current research was conducted in well-resourced institutions, potentially overlooking variability in under-resourced settings.


Asunto(s)
Costo de Enfermedad , Diabetes Mellitus Tipo 2 , Diabetes Mellitus Tipo 2/terapia , Humanos
4.
Palliat Med ; 38(6): 644-659, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38708863

RESUMEN

BACKGROUND: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. AIM: To cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability. DESIGN: Cross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using 'think aloud' and verbal probing techniques. SETTING/PARTICIPANTS: Children 5-⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites. RESULTS: Forty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing 'share' to 'express' feelings; and 'being able to ask questions' to 'having the appropriate information'. Changes to improve comprehensibility of items such as 'living life to the fullest' were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important. CONCLUSION: Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice.


Asunto(s)
Cuidados Paliativos , Padres , Psicometría , Humanos , Femenino , Masculino , Estudios Transversales , Niño , Cuidados Paliativos/psicología , Preescolar , Padres/psicología , Adolescente , Cuidadores/psicología , Reino Unido , Encuestas y Cuestionarios , Evaluación de Resultado en la Atención de Salud , Cognición
5.
Eur Arch Otorhinolaryngol ; 281(7): 3727-3733, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38573515

RESUMEN

PURPOSE: This study aims to investigate the efficacy of lower dose pilocarpine in alleviating late dry mouth symptoms in head and neck cancer patients received radiotherapy. METHODS: Eighteen head and neck cancer patients experiencing persistent dry mouth were enrolled in this study. All participants started pilocarpine treatment a median of 6 months post-radiotherapy. Initially, patients received pilocarpine at 5 mg/day, with a gradual increase to the recommended dose of 15 mg/day. A Patient-Reported Outcome Measurement (PROMs) questionnaire assessed symptoms' severity related to hyposalivation. RESULTS: All patients reported symptomatic dry mouth above grade 2 before starting the medication. Pilocarpine treatment continued based on patients' self-assessment, with a median duration of 12 months (range, 3-36 months). The median daily maintenance dose was 10 mg (range, 5 to 20 mg). Total PROMs scores significantly decreased following medication, from 13 points (range 7-18 points) to 7 points (range 4-13 points) (p = 0.001). Significant improvements were observed in questions related to dry mouth (p < 0.001), water intake during eating (p = 0.01), carrying water (p = 0.01), taste (p < 0.001), and water intake during speech (p < 0.001). Initial and maintenance doses of pilocarpine were lower, and the duration of pilocarpine usage was shorter in patients treated with intensity-modulated radiation therapy compared to conformal radiotherapy (12 months vs. 25 months, p = 0.04). CONCLUSION: Pilocarpine may be considered at doses lower for late-term dry mouth. With modern radiotherapy techniques effectively preserving the parotid gland, short-term use may be recommended in these patients. Future studies may enhance the development of a more robust patient selection criteria model.


Asunto(s)
Neoplasias de Cabeza y Cuello , Agonistas Muscarínicos , Medición de Resultados Informados por el Paciente , Pilocarpina , Traumatismos por Radiación , Xerostomía , Humanos , Xerostomía/etiología , Pilocarpina/administración & dosificación , Masculino , Femenino , Persona de Mediana Edad , Neoplasias de Cabeza y Cuello/radioterapia , Anciano , Agonistas Muscarínicos/uso terapéutico , Agonistas Muscarínicos/administración & dosificación , Adulto , Resultado del Tratamiento
6.
J Shoulder Elbow Surg ; 33(10): e529-e536, 2024 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-38521482

RESUMEN

BACKGROUND: The decision to treat shoulder osteoarthritis (OA) definitively with shoulder arthroplasty (SA) is multifactorial, considering objective findings, subjective information, and patient goals. The first goal of this study was to determine if Patient Reported Outcome Measurement Information System (PROMIS) measures correlated with patients with shoulder OA who underwent SA within 1 year. The second goal of this study was to determine if score cut-offs in PROMIS domains could further discriminate which shoulder OA patients underwent SA within 1 year. METHODS: This retrospective case-control study examined patients with a diagnosis of shoulder OA who consulted an orthopedic provider from November 1, 2020 to May 23, 2022, and recorded PROMIS measures in the domains of Physical Function, Depression, and/or Pain Interference. A surgical group was defined as patients who underwent SA within 1 year of the most recent PROMIS measures and the nonsurgical patients were defined as the control group. Mean PROMIS scores were compared between the surgical and control groups. Separate logistic regression models controlling for age, race, ethnicity, and comorbidity count were performed for each PROMIS domain as a 1) continuous variable, and then as 2) binary variable defined by PROMIS score cut-off points to determine which scores correlated with undergoing SA to further characterize the potential clinical utility of PROMIS score cut-offs in relating to undergoing SA. RESULTS: The surgical group of 478 patients was older (68.2 vs. 63.8 years), more often of White race (82.6% vs. 70.9%), and less often of Hispanic Ethnicity (1.5% vs. 2.9%) than the control group of 3343 patients. Using optimal cut-offs in PROMIS scores, Pain Interference ≥63 (odds ratio [OR] = 2.97 (2.41-3.64), P < .001), Physical Function ≤39 (OR = 1.81 (95% confidence interval, 1.48-2.22), P < .001), and depression ≥49 (OR = 1.82 (95% confidence interval, 1.50-2.22), P < .001) were all found to correlate with undergoing SA within 1 year in multivariable logistic regressions. CONCLUSION: The results of this study demonstrate that cut-off scores for PROMIS measures differentiated patients undergoing SA within 1 year. These cut-off scores may have clinical utility in aiding in decision-making regarding surgical candidates for SA. Further research is needed to validate these cut-off scores and determine how they relate to patient outcomes after SA.


Asunto(s)
Artroplastía de Reemplazo de Hombro , Osteoartritis , Medición de Resultados Informados por el Paciente , Humanos , Masculino , Femenino , Osteoartritis/cirugía , Estudios Retrospectivos , Anciano , Persona de Mediana Edad , Estudios de Casos y Controles , Articulación del Hombro/cirugía
7.
Spine J ; 24(7): 1183-1191, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38365008

RESUMEN

BACKGROUND CONTEXT: The patient-reported outcomes measurement information system (PROMIS), created by the National institute of Health, is a reliable and valid survey for patients with lumbar spine pathology. Preoperative opioid use has been shown to be an important predictor variable of self-reported health status in legacy patient-reported outcome measures. PURPOSE: To investigate the impact of chronic preoperative opiate use on PROMIS survey scores. STUDY DESIGN: Retrospective database analysis. PATIENT SAMPLE: Between March 2019 and November 2021, 227 patients underwent lumbar decompression ± ≤ 2 level fusion. Fifty-seven patients (25.11%) had chronic preoperative opioid use. OUTCOME MEASURES: Oswestry disability index (ODI) and PROMIS survey scores. METHODS: A retrospective analysis of a prospectively maintained single center patient-reported outcome database was performed with a minimum of 2 year follow-up. PROMIS Anxiety, Depression, Fatigue, Pain Interference (PI), Physical Function (PF), Sleep disturbance (SD), and Social Roles (SR) surveys were recorded at preoperative intake with subsequent follow-up at 6, 12, and 24 months postoperatively. Patients were grouped into chronic opioid users as defined by >6-month duration of use. Differences in mean survey scores were evaluated using Welch t-tests. RESULTS: Two hundred and twenty-seven patients met our inclusion criteria of completed PROMIS surveys at the designated timepoints. A total of 57 (25.11%) were chronic opioid users (COU) prior to surgery. Analysis of patient-reported health outcomes shows that long term opioid use correlated with worse ODI and PROMIS scores at baseline compared to nonchronic users (NOU). At 1 and 2 year follow-up, the COU cohort continued to have significantly worse ODI, PROMIS Fatigue, PF, PI, SD, and SR scores. There is a statistical difference in the magnitude of change in health status between the 2 cohorts at 1 year follow-up in PROMIS Depression (-5.04±7.88 vs -2.49±8.73, p=.042), PF (6.25±7.11 vs 9.03±9.04, p=.019), and PI (-7.40±7.37 vs -10.58±9.87, p=.011) and 2 year follow-up in PROMIS PF (5.58±6.84 vs 7.99±9.64, p=.041) and PI (-6.71±8.32 vs -9.62±10.06, p=.032). Mean improvement in PROMIS scores for the COU cohort at 2 year follow-up exceeded minimal clinically important difference (MCID) in all domains except PROMIS Depression, SR and SD. CONCLUSION: Patients with chronic opioid use status have worse baseline PROMIS scores compared with patients who had nonchronic use. However, patients in the COU cohort displayed clinically significant postoperative improvement in multiple PROMIS domains. These results show that patients with chronic opioid use can benefit greatly from surgical intervention and will allow physicians to better set expectations with their patients.


Asunto(s)
Analgésicos Opioides , Vértebras Lumbares , Medición de Resultados Informados por el Paciente , Humanos , Analgésicos Opioides/uso terapéutico , Masculino , Femenino , Vértebras Lumbares/cirugía , Persona de Mediana Edad , Estudios Retrospectivos , Anciano , Fusión Vertebral/efectos adversos , Adulto , Descompresión Quirúrgica
8.
PEC Innov ; 4: 100264, 2024 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-38404931

RESUMEN

Objective: Prospective cohort study to test the real-life feasibility of longitudinal patient-reported outcome measurement PROM (Integrated Palliative Outcome Scale IPOS, and NCCN Distress Thermometer DT) required for outpatients with non-curable lung or prostate cancer in comprehensive cancer centers. Methods: Assessment with paper-based IPOS and DT was observed for 15 months. We analyzed response to patients' distress (requests for supportive and palliative services) following PROM. Focus groups to comprehensively explore the user experience of patients, informal caregivers and health care professionals (HCP) supplemented the analysis. Results: Ninety-seven percent (125/129) of the patients received a questionnaire once, but quarterly assessment as recommended by certification committees was achieved only in 50% and 31% of prostate and lung cancer patients. Although both instruments were well accepted, only IPOS showed a high content validity, because some patients had difficulties in understanding the DT. Patients felt comfortable with completing the PROM, and HCP found PROM helped to structure the patient encounter. Due to organizational deficiencies in the handling of the instruments and operationalization of reactions to identified distress, the referrals to supportive and palliative services were rare. Conclusion: To facilitate consequences from PROM it should be a standardized intervention rather than assessment alone. Innovation: The patient perspective improves the implementation of PROM under real-life clinical conditions.

10.
J Patient Rep Outcomes ; 8(1): 13, 2024 Jan 31.
Artículo en Inglés | MEDLINE | ID: mdl-38294575

RESUMEN

BACKGROUND: The construct validity and interpretation of the Patient-Reported Outcome Measurement Information System (PROMIS®) Physical Function short form 20a (PF20a) questionnaire were evaluated for patients with late-onset Pompe disease (LOPD), a rare, autosomal recessive, progressive neuromuscular disorder treatable by enzyme replacement therapy (ERT). METHODS: In the phase 3 PROPEL study, adults with LOPD underwent testing of physical functioning and had PRO measurements at baseline and at weeks 12, 26, 38, and 52 while receiving experimental or standard-of-care ERT. All patients were pooled for analyses, without comparisons between treatment groups. Associations and correlations between PROMIS PF20a scores and the 6-minute walk distance (6MWD), % predicted forced vital capacity (FVC), manual muscle test (MMT) of the lower extremities, Gait, Stairs, Gowers' maneuver, Chair (GSGC) score, and Rasch-built Pompe-specific Activity (R-PAct) scale were evaluated by calculating regression coefficients in linear regression models and Pearson correlation coefficients (R); patients' age, sex, race, ERT prior to study, body mass index, and study treatment were included as covariables. The minimal clinically important difference (MCID) of PROMIS PF20a was determined using distribution- and anchor-based methods. RESULTS: 123 patients received at least 1 dose of ERT. In multivariable analyses, PROMIS PF20a scores had strong correlations with R-PAct scores (R = 0.83 at baseline and R = 0.67 when evaluating changes between baseline and 52 weeks) and moderate correlations with the 6MWD (R = 0.57 at baseline and R = 0.48 when evaluating changes between baseline and 52 weeks). Moderate correlations were also observed between PROMIS PF20a and MMT (R = 0.54), GSGC (R=-0.51), and FVC (R = 0.48) at baseline. In multivariable linear regression models, associations were significant between PROMIS PF20a and 6MWD (P = 0.0006), MMT (P = 0.0034), GSGC (P = 0.0278), and R-PAct (P < 0.0001) at baseline, between PROMIS PF20a and 6MWD (P < 0.0001), FVC (P = 0.0490), and R-PAct (P < 0.0001) when combining all measurements, and between PF20a and 6MWD (P = 0.0016) and R-PAct (P = 0.0001) when evaluating changes in scores between baseline and 52 weeks. The anchor-based and distribution-based MCID for a clinically important improvement for PROMIS PF20a were 2.4 and 4.2, respectively. CONCLUSIONS: PROMIS PF20a has validity as an instrument both to measure and to longitudinally follow physical function in patients with LOPD. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03729362. Registered 2 November 2018, https://www. CLINICALTRIALS: gov/search?term=NCT03729362 .


Asunto(s)
Enfermedad del Almacenamiento de Glucógeno Tipo II , Adulto , Humanos , Enfermedad del Almacenamiento de Glucógeno Tipo II/diagnóstico , Índice de Masa Corporal , Correlación de Datos , Terapia de Reemplazo Enzimático , Medición de Resultados Informados por el Paciente
11.
Neurol Sci ; 45(3): 1217-1224, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-37801235

RESUMEN

OBJECTIVE: Cluster headache is associated with a decreased quality of life (QoL). The increased focus on patient-reported outcome measures (PROMS) has led to the creation of a tailored Cluster Headache Quality of Life scale (CHQ). Our objective was to create and authenticate a Dutch version of the CHQ (CHQ-D). METHODS: The TRAPD model (Translation, Review, Adjudication, Pretesting, Documentation) was used to translate the CHQ from English to Dutch and ensure cross-cultural adaption. Pre-testing was performed in n = 31 participants, and validity was in a new sample of n = 40 participants who completed the CHQ twice at a 2-day interval. Intraclass correlation coefficient (ICC) and Cronbach's alpha were used to assess the validity and reproducibility of the CHQ-D. RESULTS: To produce the CHQ-D, we made five modifications based on pretesting. Participants finished the questionnaire in a median time of 10 min (IQR:10.0, 17.5) and 90% within 20 min. The majority of participants (74.2%) did not find it burdensome at all. The reliability of the CHQ-D was excellent (Cronbach's alpha: 0.94; ICC: 0.94). CONCLUSION: The CHQ-D is a valid and practical instrument for QoL in individuals with cluster headache. We aim to use CHQ-D as PROM in clinical research in the Netherlands to enforce international collaborations and comparisons of studies.


Asunto(s)
Cefalalgia Histamínica , Calidad de Vida , Humanos , Cefalalgia Histamínica/diagnóstico , Reproducibilidad de los Resultados , Psicometría , Encuestas y Cuestionarios , Traducción
12.
J Orthop Sci ; 29(1): 94-100, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-36604238

RESUMEN

BACKGROUND: To investigate and compare the surgical outcomes of short and thoracopelvic corrective fusion with our two-stage technique using lateral lumbar interbody fusion (LLIF) and posterior open surgery. METHODS: Consecutive patients with adult spinal deformities who underwent a planned two-stage anterior-posterior surgery, using LLIF for the first stage and posterior open corrective fusion for the second stage, with a minimum of 2 years of follow-up were included. Patients who underwent lumbar or lumbosacral corrective fusion and thoracopelvic corrective fusion were categorized into the short group and thoracopelvic groups, respectively. We investigated the spinopelvic parameters and patient-reported outcome measurements. RESULTS: Seventy-four consecutive patients (8 men, 66 women; average age, 70.0 years) were included. Ten patients underwent short corrective fusion following significant improvements in the symptoms and radiographic parameters post-LLIF. Several preoperative spinopelvic parameters were better in the short group. Compared to the thoracopelvic group, those who underwent short fusion had a poorer alignment 2 years postoperatively but with comparable results and a significantly higher function score on the Scoliosis Research Society-22 r (SRS-22r) questionnaire. The mean Oswestry Disability Index and SRS-22r scores significantly improved during the 2-year postoperative follow-up in both the groups. CONCLUSIONS: Short corrective fusion can be considered in patients whose symptoms and radiographic parameters significantly improve following LLIF. Patients who undergo short fusion with LLIF application have poorer alignment than those who undergo thoracopelvic fusion 2 years postoperatively; however, the results are comparable, and the function score is significantly improved.


Asunto(s)
Escoliosis , Fusión Vertebral , Adulto , Masculino , Humanos , Femenino , Anciano , Vértebras Lumbares/diagnóstico por imagen , Vértebras Lumbares/cirugía , Complicaciones Posoperatorias/etiología , Escoliosis/diagnóstico por imagen , Escoliosis/cirugía , Escoliosis/etiología , Fusión Vertebral/métodos , Región Lumbosacra/cirugía , Estudios Retrospectivos , Resultado del Tratamiento
13.
Acta Paediatr ; 113(1): 98-104, 2024 01.
Artículo en Inglés | MEDLINE | ID: mdl-37815009

RESUMEN

AIM: Examining health-related quality of life (HRQoL) is important to improve patient care. In this study, we translate and evaluate the Finnish versions of the Food Allergy Specific Quality of Life Questionnaires (FAQLQs) from a Finnish perspective and undertake a detailed evaluation of the 10-question Parent Form Questionnaire (FAQLQ-PF10). METHODS: This validation study was performed to evaluate the Finnish versions of the FAQLQs. Validation was performed by analysing clinical characteristics, factor loadings and Cronbach's α reliability estimates. The inclusion criteria for participants in this study were having a doctor-diagnosed food allergy or being a parent of a child with a doctor-diagnosed food allergy and being able to answer the questionnaire in Finnish. RESULTS: Altogether, 247 questionnaires were completed in this study. Most of the respondents had multiple food allergies (77%, 189/247). Spearman's correlations related to the 10-question parent form (FAQLQ-PF10), the 30-question parent form (FAQLQ-PF) and the Food Allergy Severity Measurement-Parent Form (FAIM-PF) were statistically significant (p value = 0.000-0.007). The reliability of the Finnish versions of the FAQLQs measured by Cronbach's α was overall good (0.75-0.981). CONCLUSION: The Finnish versions of the FAQLQs are reliable and suitable to use, and the FAQLQ-PF10 has good usability.


Asunto(s)
Hipersensibilidad a los Alimentos , Calidad de Vida , Niño , Humanos , Reproducibilidad de los Resultados , Finlandia , Hipersensibilidad a los Alimentos/diagnóstico , Encuestas y Cuestionarios , Padres
14.
Injury ; 55(2): 111285, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-38134489

RESUMEN

INTRODUCTION: Inability to drive a motor vehicle due to lower extremity injury is a major inconvenience. Timing of safe return to driving has not been much studied. Objective measurements such as time to brake (TTB) have been proposed; however, utility and concordance of functional outcome measurements have not been previously evaluated. The purpose of this project is to measure these parameters and to assess for associations with ability to safely return to driving, improving the ability of clinicians to assess for measurements of driving readiness without specifically measuring TTB. METHODS: A prospective, cohort study of 232 patients with complex lower extremity injuries to the pelvis, acetabulum, hip, femur, knee, tibia, ankle, and foot was performed. Time to brake (TTB) was measured once weightbearing was allowed. Function was assessed by the Musculoskeletal Function Assessment (MFA) questionnaire, and pain, mobility, and physical functions, via patient reported outcome measurement information system (PROMIS) surveys. RESULTS: Patients with longer TTB had significantly elevated MFA scores indicating increased musculoskeletal dysfunction post-injury. As the MFA score increased by 1 point, TTB increased by 0.013 s (p<0.001). PROMIS metrics were also significantly associated with patients experiencing more pain and worse mobility as TTB increased. DISCUSSION: Many patients continue to exhibit musculoskeletal dysfunction several months post-treatment for complex lower extremity injuries. Patients with better PROMIS metrics and MFA scores, and shorter TTB are more appropriate to return to driving. Surgeons may be better informed about safe driving ability by considering these measurements. LEVEL OF EVIDENCE: II.


Asunto(s)
Traumatismos de la Pierna , Humanos , Estudios Prospectivos , Estudios de Cohortes , Extremidad Inferior/lesiones , Dolor , Medición de Resultados Informados por el Paciente
15.
AJOG Glob Rep ; 3(4): 100275, 2023 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-38077226

RESUMEN

BACKGROUND: Patients presenting for gynecologic surgery are a heterogeneous group. Preoperative quality of life may be a useful tool to guide postoperative management. OBJECTIVE: This study aimed to examine the key drivers of preoperative quality of life to improve counseling and postoperative management. STUDY DESIGN: This study analyzed preoperative survey results from 154 participants using the following surveys: National Institutes of Health Toolbox Global Health v1.2, Gastrointestinal: Gas and Bloating v1.1 13a, Gastrointestinal: Diarrhea v1.0 6a, and Sexual Function and Satisfaction Brief Profile (Female) v2.0, Perceived Stress Scale, the Vaginal Assessment Scale, and the Vulvar Assessment Scale. Survey results in the form of T-scores were compared in patients with endometrial cancer and patients with benign gynecologic conditions using the Kruskal-Wallis test. The multivariate analysis was performed using linear regression to adjust the comparisons for age, body mass index, and comorbidity. RESULTS: Of the 154 patients, preoperative diagnosis was benign in 66% (n=102) and endometrial cancer in 34% (n=52). Patients with endometrial cancer were more likely to be older, non-White, in lower income brackets, have higher body mass index, and be postmenopausal (P<.05). Although preoperative global health scores were similar between benign and malignant cases (P>.05), when adjusted for age, the differences in global health quality of life between patients with benign gynecologic conditions and those with endometrial cancer became significant, because the endometrial cancer group was older than the benign group (P<.05). However, when adjusting for age, body mass index, and comorbidities (hypertension and diabetes), the differences were no longer significant (P>.05). Sexual interest was decreased in the patients with endometrial cancer both in the unadjusted and adjusted model; and vulvar complaints became significantly different between the groups when controlling for body mass index, age, and comorbidities (P<.05). CONCLUSION: Despite substantial differences in preoperative diagnosis, preoperative quality of life is highly influenced by age, body mass index, and comorbidities. Therefore, these factors should be explored in surgical outcomes and postoperative management trials.

16.
Asia Pac J Oncol Nurs ; 10(12): 100312, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-38106438

RESUMEN

Objective: This study aimed to examine the psychometric properties of the Chinese version of the Patient-Reported Outcome Measurement Information System (PROMIS)-Cancer-Anxiety item bank using a graded response model in a sample of patients with cancer. Methods: A cross-sectional study was conducted and the Chinese version of the PROMIS-Cancer-Anxiety item bank was used to measure anxiety in patients with cancer. The unidimensional structure of the item bank was evaluated using principal component analysis. Residual correlations and the graphs of item mean scores conditional on the rest scores were examined to evaluate the local independence and monotonicity of the items, respectively. Item characteristics were described using item parameter estimates and item information. Operating characteristic curves (OCCs) and test information curve (TIC) were also plotted. Measurement invariance across age, gender, and education level was assessed to identify possible differential item functioning (DIF). Results: A total of 1075 patients with cancer were enrolled. Under the assumptions of unidimensionality, local independence, and monotonicity, the discrimination parameters a ranged from 2.30 to 5.47, and the threshold parameters b ranged from b1 = -2.87 to b4 = 3.21 with proper intervals. Completely overlapped category curves were not observed among the OCCs of any items. Item information and TIC showed that the item bank had a wide measurement range. The DIFs for age, gender, and education level for all items were not remarkable. Conclusions: The results supported using the Chinese version of the PROMIS-Cancer-Anxiety item bank to measure anxiety and develop a computerized adaptive testing (CAT) system for anxiety in patients with cancer.

17.
J Hand Surg Glob Online ; 5(6): 733-739, 2023 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-38106934

RESUMEN

Purpose: This registry study compares the patient-reported outcomes of 3 treatments for Dupuytren´s disease: open fasciectomy (OF), collagenase injection (CCH) and percutaneous needle fasciotomy (PNF). Methods: From the Swedish national quality registry for hand surgery (HAKIR) we included 2,585 procedures (in 2,414 patients): 1,200 treatments were OF, 918 CCH, and 467 PNF. The choice between CCH and PNF varied mainly because of regional differences in reimbursement of CCH. We report the results of the validated patient-reported outcome instrument HQ-8. HQ-8 evaluates symptoms in the treated hand and is issued before treatment, 3 and 12 months after treatment and is used for all patients in HAKIR. Results: At 3-month follow-up, patients treated with CCH or PNF experienced less stiffness, weakness, numbness, tingling and sensitivity to cold. At 12 months, the differences among the 3 treatments were smaller, but CCH patients experienced less stiffness and weakness compared to PNF-treated patients. Conclusions: Most randomized controlled trials have not shown significant differences in recurrence rates or patient-reported outcomes between CCH and PNF, but the number of patients has been limited and no randomized controlled trials have included all 3 treatments. In the present study, we compared registry data on patient-reported outcomes for OF, CCH, and PNF in a real-life clinical setting. Our results confirm that the noninvasive treatments (CCH and PNF) cause less disability than OF and indicate a possible advantage of CCH compared to PNF regarding stiffness and weakness at 1 year after treatment based on patient-reported outcomes. Patient-reported residual symptoms are important to consider when informing patients and selecting treatment for Dupuytren´s disease. Type of study/level of evidence: Observational registry study III.

18.
F1000Res ; 12: 224, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37942019

RESUMEN

Background: Despite the development of patient-centred or patient-reported outcome measures (PCOMs or PROMs) in palliative and end-of-life care over recent years, their routine use in practice faces continuing challenges. Objective: To update a highly cited literature review, identify and synthesise new evidence on facilitators, barriers, lessons learned, PCOMs used, models of implementation, implementation outcomes, costs, and consequences of implementing PCOMs in palliative care clinical practice. Methods: We will search MEDLINE, PsycINFO, CINAHL, Embase, Emcare, SCI-Expanded, SSCI, ESCI, and BNI. The database search will be supplemented by a list of studies from the expert advisory committee, hand-searching of reference lists for included articles, and citations of the original review. We will include primary studies using a PCOM during clinical care of adult patients with advanced disease in palliative care settings and extract data on reported models of implementation, PCOMs, facilitators, barriers, lessons learned, costs, and implementation outcomes. Gough's Weight of Evidence Framework will be used to assess the robustness and relevance of the studies. We will narratively synthesise and tabulate the findings. This review will follow PRISMA, PRISMA-Abstract, PRISMA-P, and PRISMA-Search as the reporting guidelines. Source of funding: Marie Curie. The funder is not involved in designing or conducting this study. Protocol registration: CRD42023398653 (13/02/2023).


Asunto(s)
Evaluación de Resultado en la Atención de Salud , Cuidados Paliativos , Humanos , Adulto , Cuidados Paliativos/métodos , Revisiones Sistemáticas como Asunto , Metaanálisis como Asunto , Literatura de Revisión como Asunto
19.
Support Care Cancer ; 31(10): 567, 2023 Sep 08.
Artículo en Inglés | MEDLINE | ID: mdl-37682320

RESUMEN

PURPOSE: The purpose of this study was to identify and evaluate the use of the Patient-Reported Outcomes Measurement Information System in patients with gastrointestinal cancer, as well as provide references for analyzing treatment outcomes, gauging prognostic risk, and assessing clinical symptoms and function in gastrointestinal cancer patients. METHODS: PubMed, Web of Science, ProQuest, Embase, and CINAHL were systematically searched using keywords and controlled vocabulary through January 2023. RESULTS: The scoping review collected 30 studies published from 2012 to 2022, including observational studies (n = 21), interventional studies (n = 4), and mixed studies (n = 5). Outcome indicators included mood, pain, fatigue, sleep, the ability to perform activities of daily living, social functioning, and other health problems. CONCLUSION: Being a self-report questionnaire, the Patient-Reported Outcomes Measurement Information System offers a full assessment of patient's symptoms and quality of life, and accurately captures their actual thoughts, feelings, and experiences. Individuals with gastrointestinal cancer made frequent use of the Patient-Reported Outcomes Measurement Information System to provide an accurate measure of their health status.


Asunto(s)
Actividades Cotidianas , Neoplasias Gastrointestinales , Humanos , Calidad de Vida , Medición de Resultados Informados por el Paciente , Sistemas de Información
20.
Palliat Care Soc Pract ; 17: 26323524231186827, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37560175

RESUMEN

Background: Over the last decades, patient-reported outcome measures (PROM) have been developed for a better understanding of patient needs. The Integrated Palliative Care Outcome Scale (IPOS) is an internationally recommended PROM in palliative care. The validated electronic version of IPOS (eIPOS) was implemented in four German specialist palliative home care (SPHC) teams for use in everyday clinical practice. Patients reported symptoms and concerns via eIPOS, which were transmitted directly to the electronic patient record of the respective SPHC team. Objectives: The aim of the study was to describe and explore the health care professionals' (HCPs') experiences regarding acceptance and use of eIPOS in clinical practice in SPHC. Design: The mixed-methods sequential explanatory design comprised an anonymized quantitative online survey followed by qualitative focus groups. Methods: The online survey asked in both closed and open questions for HCP's experience with eIPOS. Ambiguous results from the survey were discussed in two focus groups. Survey data were analysed with descriptive and univariable statistics, and the framework approach was used for qualitative data. In a further step, we conducted integrated analysis of quantitative and qualitative results using joint displays. Results: All HCPs of the four SPHC teams (n = 52) were invited to participate. HCPs participating in the survey (n = 32) and the focus groups (n = 7) saw potentials for implementing ePROM in palliative home care - as far as it is technically easy to handle and can be easily integrated into clinical practice. Conclusion: Successful use of ePROMs is affected by the possibility of easy integration into the teams' different structures and processes and the HCPs' perceptions of potentials regarding ePROM use in SPHC. Registration: The study is registered on clinicaltrials.org (NCT03879668).


The use of electronic patient-reported outcome measures in specialist palliative home care: what do professionals think about it? A mixed-methods study Patient-reported outcome measures (PROMs) are short questionnaires developed to assess a patient's health status at a particular point in time. The Integrated Palliative Care Outcome Scale (IPOS) is such a questionnaire, and eIPOS is an electronic version of IPOS. IPOS asks about patients' symptoms and problems when they suffer from advanced diseases. We conducted this study to understand what health care professionals (HCPs) think about electronic PROMs (ePROMs) in palliative home care. We first asked the HCPs to answer questions in an online survey. Then, HCPs discussed the use of eIPOS in small discussion groups. This study design is called 'Mixed-Methods sequential design'. We found that all HCPs used the information they received through eIPOS ­ some frequently and some less often. Many HCPs see potential in using ePROMs to support care. For example, because ePROMs help them to understand patients' symptoms and problems better. However, they also pointed out that eIPOS needs technical improvement. Also, the procedures of eIPOS need to fit into the work routine of the palliative care team. The findings demonstrate the perspectives of HCPs on ePROM. These are valuable to understand how ePROM can be implemented in palliative home care. We can also learn about how to implement other digital tools in other settings of palliative care.

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