115 The Impact of Burn Injury on Upper Extremity Prosthesis Users

2021 ◽  
Vol 42 (Supplement_1) ◽  
pp. S77-S77
Author(s):  
Jill M Cancio ◽  
Matthew Borgia ◽  
Leopoldo C Cancio ◽  
Linda Resnik
Keyword(s):  
Quality Of Life ◽  
Upper Extremity ◽  
Performance Testing ◽  
Hospital Length Of Stay ◽  
Shoulder Abduction ◽  
Phantom Pain ◽  
Assessment Procedure ◽  
Full Time ◽  
The Impact

Abstract Introduction Burns with upper extremity (UE) amputation present a unique rehabilitation challenge. The purpose of this study of UE amputees who are active prosthesis users was to compare outcomes for those with and without burns. Methods This is part of a larger nationwide study of U.S. military members and veterans with UE amputations. In-person data were collected at 5 sites. An therapist measured passive and active range of motion (PROM, AROM); administered the Quick Disability of the Arm, Shoulder, and Hand; Community Reintegration of Injured Service Members-Computer Adaptive-Test; Trinity Amputation and Prosthetic Experience Scale; health-related quality of life (VR-12); Activities Measure for Upper Extremity Amputees; Southampton Assessment Procedure; 9-Hole Peg Test; and Jebsen-Taylor Hand Function Test (JTHF); and recorded residual and phantom pain; timing of prosthesis receipt; and current prosthesis use. The IRB approved this study. Results Data were collected on 126 individuals with UE amputation, of whom 105 had data on etiology and were included. Of these, 13 (12.4%) had burns (B) vs non-burn (NB). The majority were unilateral amputees (69% B, 90% NB). Most were transradial (TR) amputees (B 84.6%, NB 66.3%) as opposed to transhumeral (TH). A minority received their prosthetics within the first 3 months post-amputation (11.1% B, 28.8% NB) (p=0.15). Average age was 57.6 (SD 15.6) years for NB and 53.0 (20.6) years for B. Mean time since amputation was 22.5 (18.0) years for NB and 25.2 (17.3) years for B. The following non-significant differences in outcomes between B and NB were observed. Thirty-nine percent of B were employed full-time vs 18.9% of NB (p=0.15). The primary prosthesis was, for NB, a body-powered prosthesis (66.7%); for B, myoelectric (50%) or body-powered (50%). For unilateral UE amputees, there were no differences between B and NB on performance testing for dexterity and functional tasks or in self-reported disability, quality of life or prevalence or intensity of pain. B trended towards more moderate to severe PROM deficits with shoulder forward flexion (TH B 50%, TH NB 23.1% [p=0.444]; TR B 20%, TR NB 5.6% [p=0.197]) and shoulder abduction (TH B 50%, TH NB 26.9% [p=0.497]; TR B 30%, TR NB 16.4% [p=0.376]). Also, TR amputees with burns trended towards more PROM deficits with elbow flexion (B 20%, NB 6.9% [p=0.212]) and elbow extension (B 20%, NB 8.6% [p=0.272]). AROM deficits also trended greater in B. Conclusions We did not observe differences in physical function, pain levels, or quality of life between those with and without burns. Further studies with larger samples are needed, to include analysis of burn location, burn size, hospital length of stay, and rehabilitation care.

Analysis of selected factors determining quality of life in patients after lower limb amputation- a review article

2017 ◽  
Vol 89 (2) ◽  
pp. 57-61 ◽  
Author(s):  
Anna Grzebień ◽  
Mariusz Chabowski ◽  
Maciej Malinowski ◽  
Izabella Uchmanowicz ◽  
Magdalena Milan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Lower Limb ◽  
Lower Limb Amputation ◽  
Limb Amputation ◽  
Occupational Activity ◽  
Social Aspect ◽  
Phantom Pain ◽  
Comprehensive Health ◽  
The Impact

The amputation of the lower limb is a crippling procedure, which impairs both physical and mental aspect of the patient’s life and therefore, it is important to provide these patients with comprehensive health care. Patients and their families must change their lives and reorganize them, which is undoubtedly associated with a decrease in the quality of life. The aim of this study was to analyze various determinants of quality of life in patients after lower limb amputation and their impact on the physical, mental and social aspect of life. Based on the available literature, this paper discusses certain factors determining quality of life, including the presence of phantom pain and stump pain, the way patients move, independence in daily activity, occupational activity, and access to rehabilitation. Analysis of the impact of particular factors on quality of life in people after lower limb amputation may contribute to the improvement and introduction of new paradigms regarding care provided for amputees.

Disease Burden and Treatment Impact Associated with Myelodysplastic Syndromes: Preliminary Findings From a Web-Based Survey.

Blood ◽  
2009 ◽  
Vol 114 (22) ◽  
pp. 4522-4522
Author(s):  
Alan F List ◽  
Susan Mathias ◽  
Ross D. Crosby ◽  
Kathy Heptinstall ◽  
David Cella
Keyword(s):  
Quality Of Life ◽  
Data Collection ◽  
Myelodysplastic Syndromes ◽  
Disease Burden ◽  
Full Time ◽  
Intermediate Risk ◽  
Common Diagnosis ◽  
Patient Reported ◽  
The Impact

Abstract Abstract 4522 Purpose Research has led to a better clinical understanding of myelodysplastic syndromes (MDS), but little is known about its burden from the patient perspective. In order to gain insight into the effects of MDS and its treatments on the lives of patients with MDS, patients with MDS self-administered a patient-reported outcomes (PRO) questionnaire. Methods No single comprehensive disease-specific questionnaire currently exists to assess health-related quality of life (HRQoL) in MDS patients. Based on a review of the literature and an understanding of the important issues that MDS patients face, we developed a PRO questionnaire which included: HRQoL items from existing questionnaires; health care resource utilization (HCRU) items including how the MDS diagnosis was made; the use of prior and current treatments; complications associated with treatment; and the impact of symptoms such as thrombocytopenia on usual activities. All adult patients with MDS are eligible to complete the questionnaire one time. Questionnaires are available at patient forums or alternatively patients can complete the survey online via the MDS Foundation website. The questionnaire, includes widely established measures such as the EuroQol (EQ)-5D, the FACT-Th [containing the Functional Assessment of Cancer Therapy (FACT)-General plus the 18 additional items for thrombocytopenia], and some additional questions developed specifically for this study and/or questionnaires currently being used in clinical studies. Data are currently available for the first 82 respondents, and data collection will continue until a total of approximately 200 MDS patients complete the survey. EQ-5D scoring (Index and VAS scores) and FACT (total and thrombocytopenia scale) scores are based on published scoring algorithms. HRQoL comparisons were made across patients based on current hemoglobin levels (< 8 grams/dL versus ≥ 8 grams/dL) and current platelet count values (< 30 × 109/L versus ≥ 30 × 109/L). Results The mean time since MDS diagnosis was 4.1 ± 4.3 years, while the most common diagnosis type was RARS (21%) followed by MDS associated with del (5q) or 5q- (17%). Forty seven percent had low risk, 36% intermediate risk 1, 11% intermediate risk 2 and 6% reported high risk IPSS scores. Mean age was 64.7 ± 11.2 years (range: 29.7 to 82.8) and a slight majority (54%) was male. Twenty six percent worked for pay, while 30% reported they were no longer able to work for pay or had to work part time instead of full time due to their MDS. Although sample sizes were small in the low platelet and low hemoglobin groups as reflected in the table below scores, the EQ-5D and FACT reflected better HRQoL in the higher hemoglobin and higher platelet value groups. Conclusions Results from this study provide valuable preliminary findings on the burden associated with MDS. Once data collection is complete, additional analyses will focus on the influence of current treatment, time since diagnosis, age and gender on disease burden. This PRO instrument is intended to serve as a basis for a quality of life instrument specific to the myelodysplastic syndromes currently under development by the MDS Foundation. Disclosures: No relevant conflicts of interest to declare.

scholarly journals Assessment of Health Related Quality of Life in Patients with Epilepsy

2019 ◽  
Vol 9 (5-s) ◽  
pp. 30-33
Author(s):  
Reenoo Jauhari ◽  
Aarti Sati ◽  
Nuvera Aqeel
Keyword(s):  
Quality Of Life ◽  
Nuclear Family ◽  
Lower Class ◽  
Full Time ◽  
Health Related Quality ◽  
Epileptic Patients ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Background: Estimation of Quality of life is a useful outcome measure to know about epilepsy care from patient’s perspective. Assessing QOL of epileptic patients is important so as to manage the epilepsy and to implement some interventional programs in order to improve the quality of life of these patients. The study aims to find out the impact of epilepsy on quality of life of epileptic patients Material and method: This was a cross-sectional, questionnaire-based study, conducted from March to August 2019 for a period of 6 months, after approval from Institutional Ethics Committee. Data was analyzed using Statistical Package for Social Sciences (SPSS) version 25. The quality of life in epilepsy (QOLIE-31) was used for collecting data on health-related QOL. Result: The study group consisted of 65 patients of whom 48 were males (73.84%) and 17 were females (26.15%). Their ages ranged from 19 to 60 years. (mean age: 35.65). Majority of the patients were in the age range of 30-41 (40%). 50.8% participants were from nuclear family and 49.2% were from joint family system. Most of the patients had lower class socioeconomic status (61.5%). As regard to the employment status, 38.4% of patients were full time employed, 13.8% were part time employed. 29.2% were unemployed and 9.23% were retired and 9.23% were students.  The medication analysis revealed that 30.6% of the participants were on monotherapy whereas 69.0% were on polytherapy. The mean total QOLIE-31 score was 39.12 (SD-5.00). Conclusion: Epileptic patients had poor QOL with low total QOLIE-31 score, unemployment, use of combination therapy and people belonging to lower class were associated with lower quality of life in individuals with epilepsy. Keywords: Health Related Quality of life, Epilepsy, Quality of Life in Epilepsy (QOLIE-31) questionnaire

scholarly journals EP16 The impact of comorbidities on individuals with inflammatory arthritis

Rheumatology ◽  
2020 ◽  
Vol 59 (Supplement_2) ◽  
Author(s):  
Gouri M Koduri ◽  
Nicola Gullick ◽  
Fiona Hayes ◽  
Abdul Kayani ◽  
Shirish Dubey ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Smoking Cessation ◽  
Inflammatory Arthritis ◽  
Health Resources ◽  
Full Time ◽  
Lifestyle Advice ◽  
Full Time Employment ◽  
The Impact ◽  
Current Guidelines

Abstract Background Inflammatory arthritis (IA) predisposes to comorbidities (CC) including cardiovascular disease, osteoporosis, depression, infections, and cancer. CC are associated with higher mortality, poorer quality of life, and greater utilisation of health resources. Treating CC can be challenging and their impact is not addressed by current guidelines. The patient’s perspective of living with multiple conditions remains largely unexplored. We explored patient experience, impact of CC and polypharmacy on their quality of life and activities of daily living. Methods A mixed methods approach has been used. Patients with a definite diagnosis of IA with at least 1 Charlson comorbidity were invited to answer questionnaires. A sample of patients was invited for an in-depth qualitative interview which was analysed using thematic analysis approach. Results 146 patients from 3 centres were recruited. 82 (56%) were females. 58 (40%) had 1 CC, 62 (42.5%) had ≥2 CC, 21 (14.5%) had ≥4 CC. Most common CC was hypertension 76 (53%), pulmonary disease 49 (34%), and diabetes 34 (23.5%). 28 (19%) remained in full time employment and 19 (13%) were unemployed. 27 (18.5%) had to cut down hours because of illness. Disease duration was &gt;10 years in 74 (51%), 5-10 years in 29 (20%), 3- 5 yrs in 21 (14%) and &lt;3 years in 22 (15%). Self-rated severity of disease was rated as low (26%), moderate (42%), severe (24%) and very severe (5.5%). Awareness and impact of CC: 77 (53%) expressed that CC affected their health as much as their arthritis. No information on CC was provided in 27 (18%), minimal information in 35 (24%) and detailed information 69 (47%). 68 (47%) were aware that some of the comorbidities could be the result of the disease or medications and 72 (49%) weren’t aware. 82 (56%) needed help from their family members/carers and of those 30% needed help daily due to CC. Polypharmacy: 73 (50%) stated either they were not involved or ‘just a little’ in choice of medication. 23 (15%) needed medication for side effects. 116 (79%) stated that doctors discuss the risks and benefits at follow ups. 130 (89%) take arthritis and CC related medication regularly. Lifestyle advice: 106 (73%) stated that education on CC wasn’t offered. 24 (16%) were not offered smoking cessation and 32 (22%) declined smoking cessation clinics. 43 (30%) weren’t aware that obesity could cause joint pains or increase the risk of diabetes, hypertension or IHD. 95 (65%) said advice on benefits of exercise was provided. Light exercises such as walking for minimum of 30 minutes was undertaken by 75%: reasons for not exercising were pain, fatigue, lack of motivation, low morale and CC. Conclusion This novel study provides insight into patient experiences of understanding comorbidities in the context of inflammatory arthritis. CC have a large impact on their lives and current care does not adequately meet their needs with respect to education of CC, understanding the impact, shared decision-making and lifestyle advice. Disclosures G.M. Koduri Honoraria; Roche. Grants/research support; Funding from Charity. N. Gullick None. F. Hayes None. A. Kayani None. S. Dubey None. C. Mukhtyar None.

scholarly journals Effect of a 2-Week Trial of Functional Electrical Stimulation on Gait Function and Quality of Life in People with Multiple Sclerosis

2014 ◽  
Vol 16 (3) ◽  
pp. 146-152 ◽  
Author(s):  
Abbey Downing ◽  
David Van Ryn ◽  
Anne Fecko ◽  
Christopher Aiken ◽  
Sean McGowan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Electrical Stimulation ◽  
Functional Electrical Stimulation ◽  
Gait Speed ◽  
Walking Ability ◽  
Full Time ◽  
Short Period ◽  
The Impact

Background: Footdrop is a common gait deviation in people with multiple sclerosis (MS) leading to impaired gait and balance as well as decreased functional mobility. Functional electrical stimulation (FES) provides an alternative to the current standard of care for footdrop, an ankle-foot orthosis (AFO). FES stimulates the peroneal nerve and activates the dorsiflexor muscles, producing an active toe clearance and a more normal gait. This study was undertaken to determine the effects of a 2-week FES Home Assessment Program on gait speed, perceived walking ability, and quality of life (QOL) among people with MS-related footdrop. Methods: Participants completed the Timed 25-Foot Walk test (T25FW) and two self-report measures: 12-item Multiple Sclerosis Walking Scale (MSWS-12) and 29-item Multiple Sclerosis Impact Scale (MSIS-29). Measures were taken without FES before and with FES after 2 weeks of full-time FES wear. Results: A total of 19 participants (10 female, 9 male) completed the study; mean age and duration of disease were 51.77 ± 10.16 and 9.01 ± 7.90 years, respectively. Use of FES for 2 weeks resulted in a significant decrease in time to complete the T25FW (P &lt; .0001), the MSWS-12 standardized score (P &lt; .0001), and the MSIS-29 total (P &lt; .0001), Physical subscale (P &lt; .0001), and Psychological subscale (P = .0006) scores. Conclusions: These results suggest that use of FES can significantly improve gait speed, decrease the impact of MS on walking ability, and improve QOL in people with MS-related footdrop even over a short period of time.

Assessing Fatigue and Distress in Caregivers of Hematopoetic Stem Cell Transplant Patients.

Blood ◽  
2012 ◽  
Vol 120 (21) ◽  
pp. 3169-3169
Author(s):  
Dawn Speckhart ◽  
Scott R. Solomon ◽  
Asad Bashey ◽  
Lawrence E. Morris ◽  
Shondolyn Richburg ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Stem Cell ◽  
Stem Cell Transplant ◽  
Primary Caregivers ◽  
Cell Transplant ◽  
Full Time ◽  
Time Points ◽  
Clinically Significant ◽  
The Impact

Abstract Abstract 3169 Hematopoietic stem cell transplant (HSCT) is an established treatment for certain hematologic malignancies (Thomas, 2004). The process of undergoing HSCT is intense and time consuming. Patients and their caregivers are required to commit to several months of treatment and close follow-up. Our program requires patients to have a full-time caregiver to assist them with transportation, treatment compliance, nutritional intake and emotional support. Patients are not allowed to be alone, go to public areas, or independently manage their medications. The need for a caregiver places an extra burden on the patient and their loved ones, as caregivers are not able to work full time while caring for an HSCT patient. Many studies have looked at the quality of life and various psychological symptoms in patients undergoing HSCT. Studies have analyzed the impact of HSCT on patient health related quality of life (HRQOL) during and after HSCT. However, little is known about the impact of HSCT on spouses/partners or other primary caregivers. More recently, transplant programs have begun to identify needs of HSCT caregivers. Researchers have begun to recognize caregivers as an important and often overlooked participant in the HSCT process. The current literature on HSCT caregivers suggests that caregivers for HSCT patients do report feeling stressed, exhausted emotionally and physically, and in need of support (Aslan, 2006; Boyle, 2000; Foxall, 2006). One study identified high levels of stress and depression pre-transplant (Harris, 2009). A study by Gaston-Johansson (2004), found that primary caregivers of patients with breast cancer scheduled for HSCT experience fatigue, anxiety, burden of care, and low quality of life. The purpose of this study is to examine the impact of HSCT on the caregiver's overall level of fatigue and distress. In this study, twenty-eight caregivers were evaluated using the Brief Symptom Inventory-18 (BSI-18) and Brief Fatigue Inventory (BFI) at four time points during the transplant process (PreBMT, Day 0, Day +7, and Day +30) in order to assess global stress and fatigue. These 28 caregivers were the sole caregiver responsible for a patient undergoing autologous HSCT, and did not have someone else to replace them as a caregiver during the transplant process. Caregivers were majority female (71%), Caucasian (75%), spouses/significant others (75%), and able to live at home for transplant (64%). The mean caregiver age was 55 (range = 32–69). Results indicate that there was a significant increase in fatigue for caregivers between PreBMT and Day 0 (p=.04). There was also a difference (p=.08) showing increased fatigue for caregivers between the initial PreBMT and all other time points (Days 0, 7, and 30). The caregivers indicated that their level of fatigue significantly interferes with daily functioning, including general activity and mood. The scores assessing distress (BSI-18) showed no significant difference in across the different time periods. However, throughout the transplant process, approximately 4% to 10% of caregivers did report clinically significant levels of distress, including clinically significant levels of anxiety, depression and/or somatic complaints. There was no difference in the level of distress or fatigue based on gender. In conclusion, primary caregivers of patients scheduled for HSCT experience significant levels of fatigue. Caregivers reported that their fatigue often interferes with their ability to function daily and that this fatigue increased once the transplant process began. This correlates with the requirement for the caregiver to be with the patient full time with the initiation of the preparative regimen just before Day 0. Some caregivers also report clinically significant levels of distress, although it does not appear to change significantly during the transplant process. Further research is needed to evaluate the impact of caregiver fatigue on the patient's transplant outcome and factors that might assist with caregiver distress and fatigue. Disclosures: No relevant conflicts of interest to declare.

Self-Compassion and Quality of Life in Adults Who Stutter

2020 ◽  
Vol 29 (4) ◽  
pp. 2097-2108
Author(s):  
Robyn L. Croft ◽  
Courtney T. Byrd
Keyword(s):  
Quality Of Life ◽  
Social Connectedness ◽  
The Self ◽  
Future Research ◽  
Self Compassion ◽  
Adults Who Stutter ◽  
And Gender ◽  
Relationship Of ◽  
The Impact

Purpose The purpose of this study was to identify levels of self-compassion in adults who do and do not stutter and to determine whether self-compassion predicts the impact of stuttering on quality of life in adults who stutter. Method Participants included 140 adults who do and do not stutter matched for age and gender. All participants completed the Self-Compassion Scale. Adults who stutter also completed the Overall Assessment of the Speaker's Experience of Stuttering. Data were analyzed for self-compassion differences between and within adults who do and do not stutter and to predict self-compassion on quality of life in adults who stutter. Results Adults who do and do not stutter exhibited no significant differences in total self-compassion, regardless of participant gender. A simple linear regression of the total self-compassion score and total Overall Assessment of the Speaker's Experience of Stuttering score showed a significant, negative linear relationship of self-compassion predicting the impact of stuttering on quality of life. Conclusions Data suggest that higher levels of self-kindness, mindfulness, and social connectedness (i.e., self-compassion) are related to reduced negative reactions to stuttering, an increased participation in daily communication situations, and an improved overall quality of life. Future research should replicate current findings and identify moderators of the self-compassion–quality of life relationship.

158: The Impact of Skeletal-Related Events on Preferences and Health-Related Quality of Life of Patients with Metastatic Prostate Cancer

2004 ◽  
Vol 171 (4S) ◽  
pp. 42-42 ◽  
Author(s):  
Kevin P. Weinfurt ◽  
Liana D. Castel ◽  
Yun Li ◽  
Fred Saad ◽  
Justin W. Timbie ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Metastatic Prostate Cancer ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Skeletal Related Events ◽  
The Impact

Health and Quality of Life in PTSD: What is the Impact of Co-Occurring Depression?

2008 ◽  
Author(s):  
Jennifer S. Fabritius ◽  
Lisa S. Doane ◽  
Aileen M. Echiverri ◽  
Shoshana Y. Kahana ◽  
Joshua D. McDavid ◽  
...  
Keyword(s):  
Quality Of Life ◽  
The Impact
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