Breaking bad news in spinal cord injury; a qualitative study assessing the perspective of spinal cord injury survivors in Turkey

Prior abstract publication: 2^nd Medical Rehabilitation Congress; Nov 4–7, 2010; Ankara, Turkey

Objective: This study aims to investigate the process of breaking bad news from the perspective of spinal cord injury survivors.

Design: A cross sectional, qualitative study.

Setting: Community.

Participants: Fourteen spinal cord injury survivors.

Interventions: Subjects participated in a semi-structured interview about ‘when’, ‘where’ ‘by whom’ and ‘how’ they received and ‘would’ prefer to receive bad news.

Outcome measures: Answers to ‘how’ questions were coded according to SPIKES protocol (Setting, Perception, Invitation, Knowledge, Empathizing, Summary).

Results: Eight participants (57%) reported that they received bad news from a physician, mostly during rehabilitation. All would prefer to be informed by a physician and majority preferred to be gradually informed during rehabilitation. Half were not satisfied with the content of information. Only half felt that his/her physiatrist understood his/her emotional distress. Majority of participants who received bad news from physicians reported that the setting was private and their family members accompanied them.

Conclusion: Most spinal cord injury survivors were unsatisfied with knowledge and emotional support provided by rehabilitation physicians. Participants would prefer to receive bad news by a senior physiatrist in a planned meeting during rehabilitation.     

Personal identity narratives of therapeutic songwriting participants following Spinal Cord Injury: A case series analysis

Context/Objective: Spinal Cord Injury (SCI) patients face unique identity challenges associated with physical limitations, higher comorbid depression, increased suicidality and reduced subjective well-being. Post-injury identity is often unaddressed in subacute rehabilitation environments where critical physical and functional rehabilitation goals are prioritized. Therapeutic songwriting has demonstrated prior efficacy in promoting healthy adjustment and as a means of expression for post-injury narratives. The current study sought to examine the identity narratives of therapeutic songwriting participants.

Design: Case-series analysis of the individual identity trajectories of eight individuals.

Setting: Subacute rehabilitation facility, Victoria, Australia.

Participants: Eight individuals with an SCI; 7 males and 1 female.

Intervention: Six-week therapeutic songwriting intervention facilitated by a music therapist to promote identity rehabilitation.

Outcome Measures: Identity, subjective well-being and distress, emotional state.

Results: Three participants demonstrated positive trajectories and a further three showed negative trajectories; remaining participants were ambiguous in their response. Injury severity differentiated those with positive trajectories from those with negative trajectories, with greater injury severity apparent for those showing negative trends. Self-concept also improved more in those with positive trajectories. Core demographic variables did not however meaningfully predict the direction of change in core identity or wellbeing indices.

Conclusion: Identity-focused songwriting holds promise as a means of promoting healthy identity reintegration. Further research on benefits for those with less severe spinal injuries is warranted.     

Trunk muscle activity patterns and motion patterns of patients with motor complete spinal cord injury at T8 and T10 walking with different un-powered exoskeletons

Objective: The aim of this study was to explore how neurological injured levels of spinal cord affect the performance of patients walking with different un-powered exoskeletons.

Study design: Case series observational study.

Setting: Gait and Motion Analysis Laboratory at the National Research Center Rehabilitation Technical Aids.

Methods: Electromyography and motion data from two subjects with complete spinal cord injury at T10 and T8 walking with un-powered exoskeletons were collected simultaneously.

Outcome measures: Surface electromyography of trunk muscles and motion data including joint angle and center of mass (COM).

Results: Compared to T10 subject, T8 subject activated trunk muscles in higher levels walking with all tested un-powered exoskeletons and had greater pelvic obliquity walking with reciprocating gait orthosis (RGO) and energy-stored exoskeleton (ES-EXO). ES-EXO can redistribute muscle forces, recruit trunk muscles evenly, increase walking speed and improve COM trajectory in frontal plane.

Conclusion: This study revealed differences in kinematics and muscle activities in walking with three un-powered exoskeletons between two patients with different neurological injured levels. ES-EXO had advantages over conventional un-powered exoskeletons on recruiting muscles evenly and improving walking speed, step length and COM trajectory.     

Prediction of functional recovery six months following traumatic spinal cord injury during acute care hospitalization

Objectives: To determine factors associated with functional status six months following a traumatic cervical and thoracic spinal cord injury (SCI), with a particular interest in factors related to the acute care hospitalization stay.

Design: This is a prospective cohort study. Sixteen potential predictive variables were studied. Univariate regression analyses were first performed to determine the strength of association of each variable independently with the total Spinal Cord Independence Measure (SCIM) score. Significant ones were then included in a General linear model in order to determine the most relevant predictive factors among them. Analyses were carried out separately for tetraplegia and paraplegia.

Setting: A single specialized Level I trauma center.

Participants: One hundred fifty-nine patients hospitalized for an acute traumatic SCI between January 2010 and February 2015.

Interventions: Not applicable.

Main outcome measure: The SCIM (version 3) functional score.

Results: Motor-complete SCI (AIS-A,B) was the main predictive factor associated with decreased total SCIM score in tetraplegia and paraplegia. Longer acute care length of stay and the occurrence of acute medical complications (either pneumonia, urinary tract infections or pressure ulcers) were predictors of decreased functional outcome following tetraplegia, while increased body mass index and higher trauma severity were predictive of decreased functional outcome following paraplegia.

Conclusions: This study supports previous work while adding information regarding the importance of optimizing acute care hospitalization as it may influence chronic functional status following traumatic SCI.     

The effect of behavioral intervention and nutrition education program on serum lipid profile,body weight and blood pressure in Iranian individuals with spinal cord injury: A randomized clinical trial

Objective: The efficacy of nutrition education on body weight and serum lipids has not yet been described in patients with spinal cord injury (SCI). In the present study, we examined the effect of a 7-month nutrition education program on lipid profile and body weight in individuals with SCI.

Design: Randomized clinical trial.

Setting: A tertiary rehabilitation center.

Participants: Patients with SCI who were referred to Brain and Spinal Cord Injury Research Center.

Intervention: The nutrition education program consisted of 5 education sessions during a period of 7 months.

Outcome measures: Body weight and serum concentrations of total cholesterol (TC), triglyceride (TG), high-density lipoprotein cholesterol (HDL-C) and low-density lipoprotein cholesterol (LDL-C) were measure at the beginning of the trial and after 7 months. Two-way repeated measure analysis of variance (ANOVA) was used.

Results: Total of 57 patients (27 in control group and 30 in education group) participated. Nutrition education program showed no significant effect on the levels of TC, TG, LDL-C and HDL-C (P: 0.224, 0.172, 0.107 and 0.081, respectively). No significant changes in weight and waist circumflex have been observed as well (P: 0.970 and 0.361, respectively).

Conclusion: Our findings do not support a significant influence of nutrition education program on weight and lipid profile. It seems that the nutrition education program alone is not adequately effective to have beneficial influence on weight and lipid profile.

Clinical trial registration No.: IRCT201406215968N3     

Myositis ossificans of the longus coli muscle following cervical spine fracture-dislocation

Background: Upper cervical spine fractures are traumatic injuries typically associated with high-energy trauma and have a high morbidity and mortality rate. We describe a case of upper cervical spine fracture occurring due to high-energy trauma that resulted in significant myositis ossificans (MO) of the longus coli muscle.

Study Design: Case Report and literature review.

Methods: Retrospective review of medical records.

Results: The patient was treated non-operatively for the neck rotation and MO of his longus coli muscle and had gradual improvement of symptoms.

Conclusions: To our knowledge, this is the first report of symptomatic MO of the longus coli following traumatic cervical spine fracture in an adult. Treatment with supportive measures appears to achieve satisfactory outcome.     

Potential of personal health record portals in the care of individuals with spinal cord injuries and disorders: Provider perspectives

Context/Objective: Although personal health record (PHR) portals are designed for patients, healthcare providers are a key influence in how patients use their features and realize benefits from them. A few studies have examined provider attitudes toward PHR portals, but none have focused on those who care for individuals with spinal cord injuries and disorders (SCI/D). We characterize SCI/D provider perspectives of PHR portals, including perceived advantages and disadvantages of PHR portal use in SCI/D care.

Design: Cross-sectional; semi-structured interviews.

Setting: Spinal Cord Injury (SCI) Centers in the Veterans Health Administration.

Participants: Twenty-six SCI/D healthcare providers.

Interventions: None.

Outcome Measures: Perceived advantages and disadvantages of PHR portals.

Results: The complex situations of individuals with SCI/D shaped provider perspectives of PHR portals and their potential role in practice. Perceived advantages of PHR portal use in SCI/D care included the ability to coordinate information and care, monitor and respond to outpatient requests, support patient self-management activities, and provide reliable health information to patients. Perceived disadvantages of PHR portal use in SCI/D care included concerns about the quality of patient-generated health data, other potential liabilities for providers and workload burden, and the ability of individuals with SCI/D to understand clinical information accessed through a portal.

Conclusion: Our study highlights advantages and disadvantages that should be considered when promoting engagement of SCI/D healthcare providers in use of PHR portals, and portal features that may have the most utility in SCI/D care.     

Availability and need of home adaptations for personal mobility among individuals with spinal cord injury

Objective: To identify the availability and unmet need of home adaptations (HAs) among the Swiss population with spinal cord injury (SCI).

Design: Cross-sectional study.

Setting: Swiss Spinal Cord Injury Community Survey 2012.

Participants: Individuals aged 16 or older with chronic SCI living in Switzerland.

Interventions: Not applicable.

Outcome measures: The availability of ten HAs (self-report) was analyzed by sex, age, living situation, indoor mobility, SCI severity, SCI etiology and time since SCI. The unmet need (self-report of not having a HA but needing it) of HAs was analyzed by financial hardship.

Results: Among the 482 study participants (mean age 55.2 years, standard deviation 15.0 years, 71.6% males), 85.1% had at least one HA. The most frequent HA was a wheelchair accessible shower (62.7%). Availability of HAs markedly varied with indoor mobility (e.g. 38.4% of participants using a wheelchair had a stair lift compared to 17.4% of those walking) and with SCI severity (e.g. 54.8% of those with complete paraplegia had a wheelchair accessible kitchen worktop compared to 26.0% of those with incomplete paraplegia). Unmet need was highest for adjustable kitchen worktops (78.7% of those with a need) and adjustable kitchen cabinets (75.7%) and lowest for wheelchair accessible showers (9.4%) and grab bars next to the toilet (8.5%). No significant differences in unmet need were found when stratifying for financial hardship.

Conclusion: Availability of HAs is dependent on indoor mobility and SCI severity. There is a considerable degree of unmet need for selected HAs, which couldn't be explained by financial hardship.     

A rare cause of severe epigastric pain,emesis and increased lipase

Introduction: Gastric volvulus is an uncommon, but severe pathology requiring early diagnosis and urgent treatment. Its atypical symptoms and rarity make it difficult to diagnose, possibly leading to delayed treatment and fatal complications.

Patients and methods: We present a case of a 73-year–old patient with Parkinson’s disease with complaints of severe epigastric pain, emesis and an increased lipase.

Results:

Diagnosis of an organo-axial gastric volvulus was made. Treatment consisted of reduction of the volvulus by decompression via nasogastric tube. The underlying cause was a para-esophageal hernia that was repaired by Nissen-fundoplication later on.

Conclusions: We describe symptomatology, diagnostic and therapeutic options of gastric volvulus.     

Bladder-emptying methods,neurogenic lower urinary tract dysfunction and impact on quality of life in people with long-term spinal cord injury

Objectives: To describe bladder-emptying methods used by people with long-term spinal cord injury (SCI) and to determine usage differences in relation to time since injury, sex, lesion level and completeness of lesion. Furthermore, to evaluate the relationship between bladder-emptying methods and the impact of neurogenic lower urinary tract dysfunction (NLUTD) on quality of life (QoL).

Design: Cross-sectional multicenter study.

Setting: Dutch community.

Participants: Persons dependent on wheelchairs (N?=?282) with traumatic or non-traumatic SCI for ≥10 years and age at injury of 18–35 years.

Interventions: Not applicable.

Outcome measures: The International Lower Urinary Tract Function Basic SCI Data Set and the Short-Form Qualiveen (SF-Qualiveen).

Results: Median time since injury was 22.0 years (IQR: 16.8–30.3). Clean intermittent catheterization (CIC) was most commonly used (42.6%). Longer time since injury was associated with fewer continent urinary diversions and more transurethral catheter use. Transurethral catheter use and continent urinary diversions were more prevalent among women. Participants with tetraplegia were more likely to use reflex voiding or a suprapubic catheter, and participants with paraplegia were more likely to use CIC. Transurethral catheter users reported the highest impact of NLUTD on quality of life (SF-Qualiveen score: 1.9; SD?=?0.8). Participants with a continent urinary diversion reported the lowest impact (SF-Qualiveen score: 0.9; SD?=?0.6). Higher age and indwelling catheter use versus CIC were associated with a higher impact of NLUTD on QoL.

Conclusions: CIC is the most common bladder-emptying method in Dutch people with long-term SCI. Clinicians should be aware of the impact of NLUTD on QoL, especially for those using an indwelling catheter.     

An investigation of the relationship between autonomic dysreflexia and intrathecal baclofen in patients with spinal cord injury

Objective: To study the relationship between autonomic dysreflexia and intrathecal baclofen in patients with spinal cord injury.

Design: Retrospective chart review.

Setting: Inpatient and outpatient acute rehabilitation facility.

Participants: Thirty-four subjects.

Interventions: We reviewed patients’ medical records to ascertain the presence of symptomatic autonomic dysreflexia (AD) prior to and after implantation of an intrathecal baclofen (ITB) pump for spasticity in spinal cord injury patients. We recorded risk factors for autonomic dysreflexia including kidney and bladder stones, heterotopic ossification (HO), and ischial / sacral pressure ulcers.

Outcome Measures: Presence of autonomic dysreflexia pre and post-intrathecal baclofen pump placement, presence of risk factors associated with autonomic dysreflexia including (1) kidney or bladder stones, (2) heterotopic ossification, and (3) pressure ulcers.

Results: Of the 34 subjects, 25 (73.5%) experienced AD prior to ITB pump placement and only 2 (5.9%) after placement. Four subjects (11.8%) had kidney or bladder stones, of which, all had AD prior to placement and none had AD afterwards. Twenty-six subjects (76.5%) had pressure ulcers, of which, all experienced AD prior to placement and only one (0.02%) afterwards. Six patients (17.6%) had HO, of which 5 (83%) had AD prior to placement and none afterwards. Additionally, three patients (8.8%) had at least 2 of the above risk factors, of which, all had AD prior to ITB placement and none afterwards.

Conclusion: This study showed a significant reduction of symptomatic episodes of autonomic dysreflexia after spinal cord injury, even in those with additional risk factors for development of autonomic dysreflexia.     

Unusual presentations of enlarged parathyroid cysts: two case reports

Introduction: Parathyroid cysts are infrequently encountered and have a variable presentation pattern depending on their size, location and secreting character.

Patients and methods: We report two cases of parathyroid cysts characterized by their uncommon clinical presentation.

Results: In the first case the patient presented with a large cervical cystic mass without hypercalcemia, while in the second case, the patient experienced a hypercalcemic crisis associated with acute renal failure. The variable pattern of clinical manifestations is discussed.

Conclusion: Parathyroid cysts are a rare entity. Surgical resection is the key to therapy when hyperparathyroidism or local compression are identified.     

Breaking bad news to patients with spinal cord injury in Turkey – physiatrists’ perspective

Objective: To explore Turkish physiatrists’ experiences and opinions about breaking bad news (BBN) to patients with spinal cord injury (SCI).

Design: A cross sectional study.

Setting: Turkey.

Participants: Sixty-nine physiatrists completed a questionnaire about experiences and opinions regarding BBN and self-assessment of communication skills (CS).

Results: Eleven percent of specialists and 53% of residents were trained on basic CS. All participants believed that physiatrists should play a role in BBN and the majority reported that they delivered the bad news in their clinic. Sixty-seven percent believed that the primary responsibility belongs to physiatrists. Sixty-eight percent reported that the most appropriate time for BBN is during rehabilitation. Self-assessments of CS were considered satisfactory in most steps of SPIKES protocol. Twenty percent told absolute truth to patients while 80% stated that they did so sometimes or partially. Only 41% confirmed that they do not use unrealistic statements to comfort patients. Fewer than 60% stated that they performed the most appropriate and excellent behaviors for items in “empathy” section.

Conclusion: Physiatrists had different opinions about the style of BBN. Self-assessments of CS were optimistic, however physiatrists were not fully satisfied with their empathy skills.     

Factors associated with upper extremity contractures after cervical spinal cord injury: A pilot study

Objective: To examine the prevalence of joint contractures in the upper limb and association with voluntary strength, innervation status, functional status, and demographics in a convenience sample of individuals with cervical spinal cord injury to inform future prospective studies.

Design: Cross-sectional convenience sampled pilot study.

Setting: Department of Veterans Affairs Research Laboratory.

Participants: Thirty-eight participants with cervical level spinal cord injury.

Interventions: Not applicable.

Main Outcome Measures: Contractures were measured with goniometric passive range of motion. Every joint in the upper extremity was evaluated bilaterally. Muscle strength was measured with manual muscle testing. Innervation status was determined clinically with surface electrical stimulation. Functional independence was measured with the Spinal Cord Independence Measure III (SCIM-III).

Results: Every participant tested had multiple joints with contractures and, on average, participants were unable to achieve the normative values of passive movement in 52% of the joints tested. Contractures were most common in the shoulder and hand. There was a weak negative relationship between percentage of contractures and time post-injury and a moderate positive relationship between percentage of contractures and age. There was a strong negative correlation between SCIM-III score and percentage of contractures.

Conclusions: Joint contractures were noted in over half of the joints tested. These joint contractures were associated with decreased functional ability as measured by the SCIM-III. This highlights the need the need for detailed evaluation of the arm and hand early after injury as well as continued monitoring of joint characteristics throughout the life course of the individual with tetraplegia.     

The impact of acute management on the occurrence of medical complications during the specialized spinal cord injury acute hospitalization following motor-complete cervical spinal cord injury

Context/Objective: Determine the impact of early admission and complete perioperative management in a specialized spinal cord injury (SCI) trauma center (SCI-center) on the occurrence of medical complications following tetraplegia.

Design: A retrospective comparative cohort study of prospectively collected data involving 116 individuals was conducted. Group 1 (N=87) was early managed in a SCI-center promptly after the trauma, whereas Group 2 (N=29) was surgically and preoperatively managed in a non-specialized (NS) center before being transferred to the SCI-center. Bivariate comparisons and multivariate logistic regression analyses were used to assess the relationship between the type of acute care facility and the occurrence of medical complications. Length of stay (LOS) in acute care was also compared.

Setting: Single Level-1 trauma center.

Participants: Individuals with acute traumatic motor-complete cervical SCI.

Interventions: Not applicable

Outcome measures: The occurrence of complications during the SCI-center stay.

Results: There was a similar rate of complications between the two groups. However, the LOS was greater in Group 2 (p=0.04). High cervical injuries (C1-C4) showed an important tendency to increase the likelihood of developing a complication, while high cervical injuries and increased trauma severity increased the odds of developing respiratory complications.

Conclusion: Although complication rates were similar in non-specialized and specialized centers, peri-operative management in a non-specialized center required a longer length of stay. Prompt transfer to a SCI-center may optimize the care trajectory by favoring earlier transfer to rehabilitation.     

Measuring pain phenomena after spinal cord injury: Development and psychometric properties of the SCI-QOL Pain Interference and Pain Behavior assessment tools

Objective: To develop modern patient-reported outcome measures that assess pain interference and pain behavior after spinal cord injury (SCI).

Design: Grounded-theory based qualitative item development; large-scale item calibration field-testing; confirmatory factor analyses; graded response model item response theory analyses; statistical linking techniques to transform scores to the Patient Reported Outcome Measurement Information System (PROMIS) metric.

Setting: Five SCI Model Systems centers and one Department of Veterans Affairs medical center in the United States.

Participants: Adults with traumatic SCI.

Interventions: N/A.

Outcome Measures: Spinal Cord Injury - Quality of Life (SCI-QOL) Pain Interference item bank, SCI-QOL Pain Interference short form, and SCI-QOL Pain Behavior scale.

Results: Seven hundred fifty-seven individuals with traumatic SCI completed 58 items addressing various aspects of pain. Items were then separated by whether they assessed pain interference or pain behavior, and poorly functioning items were removed. Confirmatory factor analyses confirmed that each set of items was unidimensional, and item response theory analyses were used to estimate slopes and thresholds for the items. Ultimately, 7 items (4 from PROMIS) comprised the Pain Behavior scale and 25 items (18 from PROMIS) comprised the Pain Interference item bank. Ten of these 25 items were selected to form the Pain Interference short form.

Conclusions: The SCI-QOL Pain Interference item bank and the SCI-QOL Pain Behavior scale demonstrated robust psychometric properties. The Pain Interference item bank is available as a computer adaptive test or short form for research and clinical applications, and scores are transformed to the PROMIS metric.     

An algorithm to improve outcomes of radial forearm flap donor site

Background: Due to the high rate of donor site complications the Radial Forearm Flap (RFF) has lost ground in favor of the Antero-lateral tight flap (ALT) and other flaps. We have designed a reconstruction algorithm for reconstruction of its donor site. The goal of this study was to retrospectively evaluate the impact of this algorithm on RFF donor site complication rates.

Methods: The authors analyzed retrospectively 31 patients who underwent free radial forearm flap reconstruction between November 2009 and May 2013. Donor site complications were compared with data from patients treated before introdutction of the algorithm. Within the group were compared patients in which the flap was harvested suprafascial with those in which the flap was harvested as subfascial.

Results: Before application of the algorithm, there was a 23.3% complication rate at the RFF donor site, in our experience. After introduction of the algorithm, complication rate has dropped to 3.2%, consisting in a partial skin graft necrosis treated by local wound-care and healed without further intervention.

Conclusions: Application of the algorithm described has led to a significant reduction in RFF donor site complication rates. This demonstrates that if flap donor sites are analyzed and tailor treated in the same way as primary defects are, instead of being given secondary importance and just grafted, outcomes improve.     

Post Surgical Pyoderma Gangrenosum in flap surgery: diagnostic clues and treatment recommendations

Background: Post Surgical Pyoderma Gangrenosum (PSPG) is a neutrophilic dermatosis causing aseptic necrotic ulcerations within surgical sites. It is often misdiagnosed as infection or ischemia and worsened by the inappropriate treatment. Therefore diagnostic clues must be identified and awareness for PSPG raised.

Methods: We present two cases of PSPG after flap surgery and a review of the literature.

Results: Seventeen cases of PSPG after flap surgery were found. Fever, pain and redness are the most common initial symptoms. In 63%, lesions were on the flap and the adjacent skin. In 63%, the donor site is also involved. Time to diagnosis was nine days to four years. Frequent debridement (89%) and administration of antibiotics (74%) illustrate the misdiagnosis of infection or ischemia. PSPG in flap surgery seems to be less associated with underlying diseases, than other forms of Pyoderma Gangrenosum. Corticoids are the most commonly used treatment. Of the 19 cases, 10 experienced partial or total flap loss.

Conclusion: PSPG must be included in the differential diagnosis of postoperative wound problems. Recognizing the diagnostic clues can lead to early diagnosis and treatment with systemic immunotherapy. Associated diseases should be investigated and additional surgery can only be successful when associated with immunotherapy.     

The effects of limited adventitiectomy on vascular anastomosis: An experimental study in rats

Objective: Blockages in anastomotic vessels cause complete loss of free tissue transfer and replanted limb. Many studies have been conducted in the last 30 years to solve this problem. There are insufficient studies dealing with the effects of the limited adventitiectomy done before surgery for sympathetic overactivity leading situations. The aim of this experimental study is to reveal the effects of limited adventitiectomy.

Methods: In this study, limited adventitiectomy was performed in a wide area before surgery, and the effect of this practice on the vessel diameter and anastomosis was investigated.

Results: Rapidly growing dilatation and increase in vessel diameter was observed, and dilatation continued in the limited adventitiectomy group.

Conclusions: The preoperative performed limited adventitiectomy is a useful preparation for super microsurgery. Especially in clinical practice before the free flap surgery, limited adventitiectomy can be applied if the recipient site is expected to have vascular problems.