Outpatient cancer rehabilitation to improve patient reported and objective measures of function.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e19325-e19325
Author(s):  
Mackenzi Pergolotti ◽  
Kelley Renee Covington ◽  
Ashley N Lightner ◽  
Jessica Bertram ◽  
Melissa Thess ◽  
...  
Keyword(s):  
Well Being ◽  
T Test ◽  
Post Treatment ◽  
Cancer Rehabilitation ◽  
Outpatient Rehabilitation ◽  
Measurement Information ◽  
Community Based ◽  
Persistent Symptoms ◽  
Patient Reported ◽  
The Impact

e19325 Background: Adults with cancer often struggle with persistent symptoms that negatively impact quality of life (QoL), physical and social function. Cancer rehabilitation delivered by a trained physical and/or occupational therapist (PT/OT) is recommended. However, evidence is lacking regarding the impact of community-based PT/OT on patients' functioning. Methods: We assessed adults (≥ 18 years) who completed cancer-specific visits in routine care at two outpatient rehabilitation clinics. Demographic and clinical data was patient-reported. Patient-Reported Outcomes Measurement Information System (PROMIS) measures included: Global Physical Health (GPH) and Mental Health (GMH) scale (10 item); Physical Function (PF; 4-item), and Ability to Participate in Social Roles and Activities (SRA; 4-item). Hand grip strength (HGS) and the Timed Up and Go (TUG) were administered by PT/OT. We compared outcomes collected during the first and final therapy evaluations using paired samples t-test and calculated effect size using Cohen’s d. We used independent t-test to compare mean pre-post change between patients on active treatment versus post-treatment. Results: Patients (N= 185) were predominantly female (75%), 41-64 years old (57%), and majority receiving cancer treatment (58%). Most (N =115, 62%) completed at least one follow-up evaluation over 6 weeks. From pre to post therapy, a significant (p<.05; d = 0 .35-.21) effect was observed for GPH, SRA, HGS, and TUG. There was no difference in the average improvement between active and post-treatment groups. Conclusions: Community-based cancer-specific PT/OT has a significant impact on the well-being and functioning of adults with cancer. Evidence supports the utilization of community-based, cancer-specific PT/OT throughout the cancer-care continuum. [Table: see text]

Four distinct patient-reported outcome (PRO) trajectories in longitudinal responses collected before, during, and after chemotherapy.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 2012-2012
Author(s):  
Douglas W. Blayney ◽  
Amee Azad ◽  
Melih Yilmaz ◽  
Selen Bozkurt ◽  
James D. Brooks ◽  
...  
Keyword(s):  
At Risk ◽  
Real World ◽  
Care Delivery ◽  
Global Mental Health ◽  
Well Being ◽  
Patient Reported Outcome ◽  
Post Treatment ◽  
Measurement Information ◽  
Patient Reported ◽  
Pre Treatment

2012 Background: Cancer chemotherapy, whether given with curative or palliative intent, is toxic. Toxicity is routinely captured in clinical trials by investigator observation and increasingly by PRO. The ability to capture PRO in the routine treatment workflow has been standard at Stanford since 2015 (Roy et al ASCO 2020). Analysis of longitudinally captured, real world PRO and prospectively identifying patients (pts) whose quality of life (QOL) is at risk of deteriorating either permanently or temporarily is needed. Routine serial PRO measurement should enhance precision care delivery, precision toxicity detection and management. Methods: We identified patients undergoing chemotherapy at Stanford and analyzed PROMIS (PRO Measurement Information System) responses. Pts with PROMIS survey information at three intervals—pre-treatment, during chemotherapy and post chemotherapy—were identified. We evaluated global physical health (GPH) and global mental health (GMH). Pts with a clinically significant decrease (CSD) in GPH or GMH scores were identified. A k-median cluster analysis was used to identify patient trajectory clusters and a machine-learning model was applied to identify risk factors for CSD and predict CSD. Results: We identified 670 adult oncology patients undergoing chemotherapy who completed at least one PROMIS survey in each interval. GPH scores were 48.4 ± 9.1 before, 47.1 ± 8.5 during, and 48.5 ± 8.9 after chemotherapy and GMH scores were 50.5 ± 8.2, 49.1 ± 8.5, and 50.7 ± 9.0, respectively. The majority of patients did not have a CSD in GPH or GMH post treatment compared to pretreatment scores. Pretreatment scores were the strongest predictor of a CSD in GPH and GMH. Trajectory clustering identified four distinct trajectories: Temporary Improver, Temporary Deteriorator, Improver, Inexorable Deteriorators. We were not able to predict any cluster based on pre-treatment features. Conclusions: Using routinely collected PROMIS surveys in a real-world setting, we are able to predict patients with post-treatment decreases in their physical and mental well-being. We further defined four novel patient trajectories during chemotherapy, which could guide personalized supportive interventions to improve patient’s chemotherapy experience. Identification of patients at risk for deterioration and the patterns of deterioration could help guide efficient deployment of toxicity mitigating and supportive care interventions to patients most in need.

scholarly journals Vision-related quality of life in adults with severe peripheral vision loss: a qualitative interview study

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Ryan Lange ◽  
Abigail Kumagai ◽  
Sara Weiss ◽  
Katherine B. Zaffke ◽  
Sherry Day ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Contrast Sensitivity ◽  
Qualitative Interviews ◽  
Well Being ◽  
Vision Impairment ◽  
Qualitative Interview Study ◽  
Patient Reported ◽  
Related Quality ◽  
The Impact

Abstract Background Existing patient-reported outcome (PRO) measures may not be relevant to the full range of functional and vision-related quality of life (VR-QOL) concerns of individuals with vision impairment due to severe peripheral field loss (PFL). Measurement of VR-QOL in severe PFL is important in order to determine the effectiveness of vision rehabilitation interventions for this population. The purpose of this study was to characterize the impact of severe PFL due to retinitis pigmentosa (RP) and glaucoma on VR-QOL as the initial phase in the development of a novel PRO measure. Methods Individuals with severe PFL due to RP or glaucoma were recruited from the Kellogg Eye Center and the Association for the Blind and Visually Impaired. Participants completed semi-structured qualitative interviews, the Impact of Vision Impairment (IVI) questionnaire and the RAND 36-Item Health Survey. Interviews were analyzed by two coders using thematic analysis. A matrix analysis was conducted to compare VR-QOL by cause of severe PFL. Sample size was determined by thematic saturation. Results The study included 37 participants (19 RP, 18 glaucoma). Median best-corrected visual acuity for those with RP and glaucoma was 20/40 and 20/27.5, while Pelli-Robson contrast sensitivity was 1.2 log contrast sensitivity (logCS) and 1.1 logCS, respectively. Median domain scores on the IVI (reading, mobility, well-being) ranged from a low of − 0.2 to a high of 0.7 logits in those with RP and from 0.5 to 1.2 logits in those with glaucoma. Qualitative interviews identified six VR-QOL themes relevant across participants with both RP and glaucoma, including activity limitations, driving, emotional well-being, reading, mobility, and social function. VR-QOL concerns were largely consistent among those with severe PFL due to RP and glaucoma. These overarching themes contained content relevant to specific challenges related to severe PFL. Conclusions There are commonly occurring VR-QOL concerns among individuals with severe PFL due to RP and glaucoma. The outlined themes will serve as the basis for development of the Low Vision Severely Constricted Peripheral Eyesight (LV-SCOPE) Questionnaire.

scholarly journals Responsiveness of the PROMIS and FAAM Instruments in Foot and Ankle Orthopedic Population

2018 ◽  
Vol 40 (1) ◽  
pp. 56-64 ◽  
Author(s):  
Man Hung ◽  
Judith F. Baumhauer ◽  
Frank W. Licari ◽  
Jerry Bounsanga ◽  
Maren W. Voss ◽  
...  
Keyword(s):  
T Test ◽  
Measurement Information ◽  
Foot And Ankle ◽  
Level Of Evidence ◽  
Paired Samples ◽  
Level Ii ◽  
Patient Reported ◽  
Prospective Comparative Study ◽  
Ability Measure

Background: Investigating the responsiveness of an instrument is important in order to provide meaningful interpretation of clinical outcomes. This study examined the responsiveness of the Patient-Reported Outcomes Measurement Information System (PROMIS) Physical Function (PF), the PROMIS Pain Interference (PI), and the Foot and Ankle Ability Measure (FAAM) Sports subscale in an orthopedic sample with foot and ankle ailments. Methods: Patients presenting to an orthopedic foot and ankle clinic during the years 2014–2017 responded to the PROMIS and FAAM instruments prior to their clinical appointments. The responsiveness of the PROMIS PF v1.2, PROMIS PI v1.1, and FAAM Sports were assessed using paired samples t test, effect size (ES), and standardized response mean (SRM) at 4 different follow-up points. A total of 785 patients with an average age of 52 years (SD = 17) were included. Results: The PROMIS PF had ESs of 0.95 to 1.22 across the 4 time points (3, >3, 6, and <6 months) and SRMs of 1.04 to 1.43. The PROMIS PI had ESs of 1.04 to 1.63 and SRMs of 1.17 to 1.23. For the FAAM Sports, the ESs were 1.25 to 1.31 and SRMs were 1.07 to 1.20. The ability to detect changes via paired samples t test provided mixed results. But in general, the patients with improvement had statistically significant improved scores, and the worsening patients had statistically significant worse scores. Conclusion: The PROMIS PF, PROMIS PI, and FAAM Sports were sensitive and responsive to changes in patient-reported health. Level of Evidence: Level II, prospective comparative study.

scholarly journals P1062EXPANDED DIALYSIS (HDX): IS THERE AN IMPACT ON PATIENT REPORTED SYMPTOM?

2020 ◽  
Vol 35 (Supplement_3) ◽  
Author(s):  
Jarrin Penny ◽  
Fabio R Salerno ◽  
Lisa Hur ◽  
Christopher McIntyre
Keyword(s):  
Quality Of Life ◽  
Clinical Outcomes ◽  
Symptom Burden ◽  
Well Being ◽  
Response To Therapy ◽  
High Flux ◽  
Patient Reported ◽  
Dialysis Membranes ◽  
The Impact

Abstract Background and Aims High flux dialysis membranes sufficiently remove smaller sized uremic toxins however, the accumulation and retention of larger middle molecular weight toxins, which are associated with chronic inflammation, cardiovascular disease and suboptimal outcomes are poorly cleared. The recent advent of medium-cut-off dialysis membranes, labelled “expanded dialysis” (HDx) are permeable to molecules of larger size responsible for poor clinical outcomes. However, it remains unclear if HDx can directly impact the symptoms associated with hemodialysis (HD). Symptom burden plays a significant role in quality of life (QOL) and mortality rates in the HD population. The London Evaluation of Illness (LEVIL), an application-based platform has been developed to measure patient reported outcomes (PROM). In comparison to cross-sectional PROM’s, LEVIL more accurately represents the fluctuations in daily symptoms and the impact of intervention. LEVIL evaluates general well-being, energy, sleep, appetite, pain and breathing, all of which are outcomes of interest on symptom burden in chronic kidney disease. Our aim was to determine if HDx therapy had any effect on symtoms/QOL domains using LEVIL. Method 28 patients from two dialysis centers in London Ontario were consented to participate. Patients were required to be over 18 years of age and on conventional thrice weekly maintenance HD for at least three months. 23 participants completed study and analyzed (five lost for various reasons). Baseline (BL) symptom characteristics were obtained while using high flux membrane for two weeks. Symptoms continued to be measured throughout the 12 weeks of HDx therapy two-three times weekly using LEVIL. Laboratory biomarkers including beta-2 microglobulin and free-light chains were collected at baseline and after 12 weeks of HDx therapy. Results Patients were stratified into tertiles (high/middle/low) using mean values of BL symptoms scores in each domain (wellbeing, energy, sleep, appetite, pain, breathing). Those in the high BL group were labeled as “control”. Low and middle BL measures were further stratified into responders vs. non-responders (responders were considered to have a 50% increase in any symptom domain by ≥50%). Of those domains which responded to HDx, 76% also had low BL scores with 27% having middle BL scores. General wellbeing, energy and sleep were domains with the greatest response reaching statistical significance after eight weeks of therapy. HDx had limited effect on appetite, pain and breathing. Although stratification was per domain, overall, 74% of the population studied did respond in at least one domain, with some responding in as many as five. Conclusion HDx using Theranova (Baxter) shows the most benefit in domains with low BL measures. Additionally, not everyone who had low BL scores responded after 12 weeks of therapy, leaving us to question whether HDx may have a latent effect in some individuals/populations. Those who had no response to therapy in certain domains also had greater baseline quality of life respectively. This information may assist in decision making/rationale for the utilization and implementation of such therapy. Although more work is required to further stratify symptoms in relation to demographic/biochemical finding and clinical outcomes. It is evident that HDx improves patient reported symptoms and QOL.

scholarly journals Fatigue in patients on oral targeted or chemotherapy for cancer and associations with anxiety, depression, and quality of life

2019 ◽  
Vol 18 (2) ◽  
pp. 141-147
Author(s):  
Hanneke Poort ◽  
Jamie M. Jacobs ◽  
William F. Pirl ◽  
Jennifer S. Temel ◽  
Joseph A. Greer
Keyword(s):  
Quality Of Life ◽  
Depressive Symptoms ◽  
Oral Treatment ◽  
Depression Scale ◽  
Well Being ◽  
Anxiety Symptoms ◽  
Severe Fatigue ◽  
Patient Reported ◽  
The Impact

AbstractObjectivesOral treatment (targeted or chemotherapy) for cancer is being increasingly used. While fatigue is a known side effect of intravenous chemotherapy, the rate of fatigue and the impact of fatigue on other patient-reported outcomes are not well described.MethodAt Massachusetts General Hospital Cancer Center, 180 adult patients prescribed oral targeted or chemotherapy for various malignancies enrolled in a randomized controlled trial of adherence and symptom management. Patients completed baseline self-reported measures of fatigue (Brief Fatigue Inventory; BFI), anxiety and depressive symptoms (Hospital Anxiety and Depression Scale; HADS), and quality of life, including subscales for physical, social, emotional, and functional well-being ([QOL] Functional Assessment of Cancer Therapy — General; FACT-G). We examined clinically relevant fatigue using a validated cut-off score for moderate-severe fatigue (BFI global fatigue ≥4) and tested the associations with anxiety symptoms, depressive symptoms, and QOL with independent samples t-tests.ResultsAt baseline, 45 of 180 participants (25.0%) reported moderate-severe fatigue. Fatigued patients experienced more anxiety symptoms (mean diff. 3.73, P < 0.001), more depressive symptoms (mean diff. 4.14, P < 0.001), and worse QOL on the total FACT-G score (mean diff. −19.58, P < 0.001) and all subscales of the FACT-G compared to patients without moderate-severe fatigue.Significance of resultsOne in four patients on oral treatment for cancer experienced clinically relevant fatigue that is associated with greater anxiety and depressive symptoms and worse QOL.

Music workshops as a pathway to community engagement for military veterans

2020 ◽  
Vol 11 (3) ◽  
pp. 329-340
Author(s):  
Niyati Dhokai
Keyword(s):  
Community Engagement ◽  
Military Service ◽  
Military Veterans ◽  
Well Being ◽  
Valuable Insight ◽  
Civilian Life ◽  
Post Injury ◽  
Community Based ◽  
Arts Engagement ◽  
The Impact

For military veterans who are integrating into civilian community settings after military service, community engagement often involves the negotiation of post-injury needs, the consideration of new roles within the family and community social structures and the transition from military to civilian life. Community-based music programmes can provide opportunities to explore new social relationships with family, friends and community members and reinforce a sense of well-being as well as inform facilitators about the different learning and health needs, particularly those leading to social isolation, of veterans and their families that may affect adherence and retention during the workshop series. This article examines the impact of participating in community-based guitar workshops using ethnographic observation, surveys and interviews with veteran participants. Longitudinal ethnographic information offers valuable insight to plan long-term arts engagement as veterans and their families transition to new communities and continue to utilize the arts as a way to provide positive peer-to-peer support.

scholarly journals The impact of a community based rehabilitation program in Afghanistan: a longitudinal analysis using propensity score matching and difference in difference analysis

2021 ◽  
Vol 15 (1) ◽  
Author(s):  
Jean-Francois Trani ◽  
Juanita Vasquez-Escallon ◽  
Parul Bakhshi
Keyword(s):  
Daily Living ◽  
Well Being ◽  
Medium Effect ◽  
Community Based ◽  
Persons With Disabilities ◽  
Cohen’S D ◽  
Community Based Rehabilitation ◽  
Medium Effect Size ◽  
Cohen's D ◽  
The Impact

Abstract Background The 2006 United Nations Convention on the Rights of Persons with Disabilities states that the achievement of equal rights, empowerment and social inclusion of people with disabilities requires comprehensive rehabilitation services encompassing all components of the World Health Organization Community based rehabilitation (CBR) matrix: health, education, livelihood, social and empowerment. CBR programs specifically aim to deliver such comprehensive interventions. In the present study, we investigate the impact of a CBR program in Afghanistan on all these components. Methods We enrolled 1861 newly recruited CBR participants with disabilities in the study, from 169 villages between July 2012 and December 2013 as well as 1132 controls with disabilities randomly selected through a two-stage process within 6000 households from 100 villages in the same provinces but outside the catchment area of the CBR program. We interviewed them again after one (midline) and two (end-line) years in the study. Using propensity score matching and difference in difference analysis, we estimated the impact of the CBR on outcomes of interest, namely mobility, activities of daily living, communication, participation in social and community life, emotional well-being and employment. Results Three years on average into the CBR program, participants showed a significant and close to medium effect size reduction in emotional (Cohen’s d = − 0.48, 95%CI[− 0.58--0.38]), and social participation challenges (Cohen’s d = − 0.45, 95%CI[− 0.53−− 0.36]); small to medium effect size reduction in unemployment (Cohen’s d = − 0.21, 95%CI[− 0.33--0.10]), activities of daily living (Cohen’s d = − 0.26, 95%CI[− 0.35--0.18]), mobility (Cohen’s d = − 0.36, 95%CI[− 0.44--.29]) and communication challenges (Cohen’s d = − 0.38, 95%CI[− 0.46--0.3]). Conclusions Our study indicates that a CBR program may provide positive rehabilitation outcomes for persons with disabilities even in a conflict context, and improve overall well-being of all participants with disabilities, whatever their impairment, individual characteristics and the CBR matrix components considered. Trial registration ISRCTN, ISRCTN50214054. Registered August 5th 2020 - retrospectively registered

scholarly journals #MadelungDeformity: Insights Into a Rare Congenital Difference Using Social Media

Hand ◽  
2021 ◽  
pp. 155894472110541
Author(s):  
Abbas Peymani ◽  
Max M. Lokhorst ◽  
Austin D. Chen ◽  
Chantal M.A.M. van der Horst ◽  
Bernard T. Lee ◽  
...  
Keyword(s):  
Social Media ◽  
Pain Intensity ◽  
Upper Extremity ◽  
Peer Relationships ◽  
Well Being ◽  
Global Perspective ◽  
Pain Interference ◽  
Measurement Information ◽  
Madelung Deformity ◽  
Patient Reported

Background Madelung deformity is a rare congenital hand difference with little known regarding the patient perspective. In this cross-sectional survey study, we harnessed the global reach of social media to understand the clinical spectrum of Madelung deformity and its impact on physical, mental, and social health. Methods A survey was developed based on a previously published protocol and multiple Patient-Reported Outcomes Measurement Information System (PROMIS) short forms. The survey was distributed on several Madelung deformity communities on Facebook and Instagram. T-scores were calculated, interpreted, and compared between patients who underwent surgery and those who did not. Correlations between scores were calculated using the Spearman rank correlation coefficient. Results Mean PROMIS scores for adults were as follows: pain intensity, 4.9 ± 2.8; pain interference, 57.6 ± 10.0; upper extremity, 35.2 ± 8.1; depression, 53.8 ± 11.1; anxiety, 55.4 ± 11.4; and ability to participate in social roles and activities, 42.5 ± 7.7. Mean scores for children were as follows: pain intensity, 5.0 ± 2.8; pain interference, 55.7 ± 11.3; upper extremity function, 24.6 ± 10.4; depressive symptoms, 57.7 ± 11.3; anxiety, 57.3 ± 11.9; and peer relationships, 42.2 ± 10.3. Conclusions Madelung deformity has significant effects on patients’ physical, mental, and social well-being, even after surgical treatment. Using social media, we were able to compensate for Madelung deformity’s rarity by engaging an international audience, demonstrating the feasibility to conduct research through it, and providing a global perspective of the disease entity.

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