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1.
Orphanet J Rare Dis ; 16(1): 406, 2021 09 30.
Article in English | MEDLINE | ID: mdl-34593011

ABSTRACT

Epidermolysis bullosa (EB) is characterized by skin fragility with blister formation occurring spontaneously or following minor trauma such as gentle pressure or friction. Current physiotherapy practice is based on anecdotal care, clinical expertise and creative problem solving with caregivers and individuals with EB. Evidence based intervention is needed to establish a foundation of knowledge and to guide international practitioners to create and improve standards of care to effectively work with individuals living with EB. This clinical practice guideline (CPG) was created for the purpose of providing evidence based interventions and best clinical practices for the physiotherapy management of individuals with EB. A survey was conducted within the EB community and six outcomes were identified as a priority to address in physiotherapy management, including (1) attaining developmental motor milestones, (2) identifying safe and functional mobility in the natural environment, (3) encouraging ambulation endurance, (4) supporting safe ability to bear weight, (5) improving access to physiotherapy services, and (6) optimizing interaction with the community. A systematic literature review was conducted and articles were critically analyzed by an international panel consisting of thirteen members: healthcare professionals (including physiotherapist, doctors, and occupational therapist), caregivers, and individuals with EB. Recommendations were formulated from evidence and panel consensus. An external panel of twelve were invited to improve the quality and gather feedback on draft manuscript and recommendations. This CPG describes the development of recommendations for physiotherapy management including several best practice interventions. This guideline lays the foundational work for physiotherapist throughout the world to provide high quality services while improving and maintaining functional mobility and independence within the EB community. The CPG outlines limitations in the evidence available and possible future research needed to improve physiotherapy practice.


Subject(s)
Epidermolysis Bullosa , Medicine , Physicians , Blister , Epidermolysis Bullosa/therapy , Humans , Physical Therapy Modalities
2.
Orphanet J Rare Dis ; 14(1): 129, 2019 06 07.
Article in English | MEDLINE | ID: mdl-31174559

ABSTRACT

The purpose of this article is to summarize the Dystrophic Epidermolysis Bullosa Research Association (DEBRA) International evidence-based Clinical Practice Guidelines (CPGs) for the provision of occupational therapy (OT) for children and adults living with inherited epidermolysis bullosa (EB). This is a rare genetic disorder characterized by skin fragility leading to blister formation occurring spontaneously or following minor trauma. Current OT practice for persons with EB is based on anecdotal care, clinical expertise and trial and error with collaboration between caregiver and patient. Intervention based on research is needed to establish a foundation of knowledge to guide international practitioners to create and improve standards of care and to be able to work effectively with those living with the rare diagnosis of this condition.This CPG was created by an international panel with expertise working with persons with EB. The panel was made up of 11 members including OT's, a physiotherapist, a medical doctor, social worker, person with EB and a carer of a person with EB. It describes the development of recommendations for 5 outcomes determined by survey of persons with EB, caregivers, and experienced healthcare professionals. The outcomes include independence in activities of daily living (ADL), independence in instrumental ADL, maximization of hand function (non-surgical), fine motor development and retention, and oral feeding skills. The recommendations are supplemented with additional files that include photos and specific examples to further guide occupational therapists or, in situations where an OT is not available, other members of the healthcare team.As the disorder of EB is rare, evidence-based CPGs are needed to provide a base of knowledge and practice for OTs throughout the world with the goal of providing quality care to patients, while improving their functional independence and quality of life. In addition, this information is valuable as a basis for further research.


Subject(s)
Epidermolysis Bullosa/therapy , Occupational Therapy/methods , Activities of Daily Living , Adolescent , Child , Child, Preschool , Female , Humans , Male , Quality of Life
3.
Eur J Cardiovasc Nurs ; 15(6): 417-24, 2016 10.
Article in English | MEDLINE | ID: mdl-26115954

ABSTRACT

BACKGROUND: Depression after cardiac surgery (CS) is associated with increased pain and decreased sleep quality. While cognitive behavioral therapy (CBT) aimed at depression is effective in relieving depressive symptoms after cardiac surgery, little is known about its ability to ameliorate other common postoperative problems that affect recovery and quality of life. AIMS: The purpose of this study was to evaluate the effects of CBT for depression on pain severity, pain interference, sleep, and perceived control in patients recovering from CS. METHODS: Depressed patients recovering from CS were randomized to receive either eight weeks of CBT or usual care. At baseline and post-intervention, patients completed questionnaires for depressive symptoms, pain, sleep, and perceived control. Group comparisons were conducted using t-tests or chi square analysis. Repeated measures analysis was used to assess the effect of the intervention in changes over time. RESULTS: The sample (n=53) included 16.9% women and had a mean age of 67.8±9.2 years. CBT for depression increased perceived control (p<0.001) and decreased pain interference (p=0.02) and pain severity (p=0.03). Group effects remained significant (p<0.05) for perceived control and pain interference and a trend was observed for pain severity (p<0.10) after controlling for variables that differed at baseline. There were no group differences in sleep disturbance over time. CONCLUSIONS: A depression-focused CBT intervention yields benefits in other common postoperative problems, specifically improved perceived control and decreased pain in depressed cardiac surgery patients.


Subject(s)
Cardiovascular Diseases/complications , Cognitive Behavioral Therapy , Depressive Disorder/etiology , Depressive Disorder/therapy , Pain Measurement/psychology , Pain/psychology , Postoperative Complications/therapy , Adult , Aged , Aged, 80 and over , Cardiovascular Diseases/surgery , Female , Humans , Male , Middle Aged , Postoperative Complications/psychology , Treatment Outcome
4.
J Cardiovasc Nurs ; 30(4): 319-24, 2015.
Article in English | MEDLINE | ID: mdl-24763358

ABSTRACT

AIMS: The aim of this study was to evaluate the relationship of ejection fraction (EF) and depressive symptoms in cardiac surgery patients assigned to nurse-guided cognitive behavioral therapy (CBT) or usual care (UC). METHODS: Depressive symptoms were assessed using the Beck Depression Inventory (BDI). Seventy-seven patients (31% women; mean [SD] age, 63.6 [9.8] years) received 8 weeks of either CBT or UC. Using repeated-measures analysis of variance, changes in depressive symptoms over time were evaluated. RESULTS: There was a significant interaction among time, treatment group, and EF status (p = 0.019). In the patients with preserved EF (≥40%), mean BDI scores in the UC group worsened by 1.9%, whereas those in the CBT group improved by 31.0%. In the patients with low EF (<40%), mean BDI scores worsened by 26.8% and improved by 75.3% in the UC and CBT groups, respectively. CONCLUSIONS: Nurse-guided CBT is effective in reducing depressive symptoms after cardiac surgery, particularly in patients with low EF.


Subject(s)
Cardiac Surgical Procedures , Cognitive Behavioral Therapy , Depression/physiopathology , Depression/therapy , Postoperative Complications/physiopathology , Postoperative Complications/therapy , Stroke Volume , Female , Humans , Male , Middle Aged
5.
Psychosom Med ; 76(6): 437-44, 2014.
Article in English | MEDLINE | ID: mdl-24979578

ABSTRACT

OBJECTIVE: Our objectives were to describe trajectories of depressive symptoms and pain at hospital discharge and 6 weeks later and to examine the relationship of persistent depressive symptoms to pain. METHODS: Before and 6 weeks after hospital discharge, 251 patients undergoing cardiac surgery (mean [SD] age = 67.3 [9.5] years; 73% male) completed the Beck Depression Inventory and the Brief Pain Inventory (BPI). Patients were categorized into two groups based on the presence or absence of persistent depressive symptoms (Beck Depression Inventory score >10 at both times). Between-group differences in pain interference (BPI-INT) and pain severity (BPI-SEV) were evaluated using repeated-measures analysis of variance. Linear regressions were performed to determine if changes in depressive symptoms were related to BPI-INT and BPI-SEV, controlling for demographic and clinical data. RESULTS: Persistent (16.3%) or worsening depressive symptoms (15.3%) from hospital discharge to 6 weeks were observed; many experienced at least some persistent pain (BPI-INT 67.8%, BPI-SEV 47.8%). From discharge to 6 weeks, patients with persistent depressive symptoms sustained higher levels of BPI-INT (p < .001) and BPI-SEV (p < .003). In multivariate analysis, only changes in depressive symptoms, not clinical and demographic variables, were related to BPI-INT (p < .001) and BPI-SEV (p = .001). CONCLUSIONS: Persistent depressive symptoms are independently associated with continued pain up to 6 weeks after hospital discharge. Successful treatment of ongoing pain should include screening for depressive symptoms and initiation of appropriate treatment. TRIAL REGISTRATON: Clinicaltrials.gov Identifier: NCT00522717.


Subject(s)
Cardiac Surgical Procedures/adverse effects , Depression/diagnosis , Pain/diagnosis , Postoperative Complications/diagnosis , Aged , Comorbidity , Depression/epidemiology , Depression/etiology , Female , Follow-Up Studies , Humans , Male , Middle Aged , Pain/epidemiology , Pain/etiology , Pain Measurement , Postoperative Period , Randomized Controlled Trials as Topic
6.
J Cardiovasc Nurs ; 28(4): 370-9, 2013.
Article in English | MEDLINE | ID: mdl-22635060

ABSTRACT

BACKGROUND: Despite high rates of postcardiac surgery depression, studies of depression treatment in this population have been limited. OBJECTIVE: The aim of this study was to evaluate early cognitive behavioral therapy (CBT) in a home environment in patients recovering from cardiac surgery. METHODS: : From July 2006 through October 2009, we conducted a randomized controlled trial and enrolled 808 patients who were screened for depressive symptoms using the Beck Depression Inventory (BDI) in the hospital and 1 month later. Patients were interviewed using the Structured Clinical Interview for DSM-IV; those who met criteria for clinical depression (n = 81) were randomized to CBT (n = 45) or usual care (UC; n = 36). After completion of the UC period, 25 individuals were offered later CBT (UC + CBT). RESULTS: Main outcomes (depressive symptoms [BDI] and clinical depression [Structured Clinical Interview for DSM-IV]) were evaluated after 8 weeks using intention-to-treat principles and linear mixed models. Compared with the UC group, in the CBT group, there was greater decline in BDI scores (ß = 1.41; 95% confidence interval [CI], 0.81-2.02; P = < .001) and greater remission of clinical depression (29 [64%] vs 9 [25%]; number need to treat, 2.5; 95% CI, 1.7-4.9; P < .001). Compared with the early CBT group (median time from surgery to CBT, 45.5 days) the later UC + CBT group (median time from surgery to CBT, 122 days) also experienced a reduction in BDI scores, but the group × time effect was smaller (ß = 0.79; 95% CI, 0.10-1.47; P = .03) and remission rates between the 2 groups did not differ. CONCLUSIONS: Early home CBT is effective in depressed postcardiac surgery patients. Early treatment is associated with greater symptom reduction than similar therapy given later after surgery.


Subject(s)
Cardiac Surgical Procedures/adverse effects , Cognitive Behavioral Therapy , Depression/etiology , Depression/therapy , Female , Humans , Male , Middle Aged , Time Factors
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