Suzanne L. Groah

The Relationship Between Neurological Level of Injury and Symptomatic Cardiovascular Disease Risk in the Aging Spinal Injured

Study objectives: To describe the distribution of clinically apparent cardiovascular disease (CVD) in people with long-term spinal cord injury (SCI) according to neurologic level and severity of injury.Design: Historical prospective study.Setting: Two British Spinal Injuries Centers.Participants: Five hundred and forty-five individuals surviving at least 20 years with SCI were divided into three neurologic categories by level of injury and Frankel/ASIA grade as follows: Tetra ABC, Para ABC, and All D.Main outcome measures: Cardiovascular disease outcomes defined by ICD/9 codes 390–448 and obtained through medical record review. Cardiovascular disease outcomes measured included All CVD, coronary heart disease (CHD), hypertension, cerebrovascular disease, valvular disease, and dysrhythmia.Results: After age-adjustment, the rates of All CVD were 35.2, 29.9, and 21.2 per 1000 SCI person-years in the Tetra ABC, Para ABC, and All D groups, respectively. Rates of All CVD increased with increasing age in all neurologic groups. Tetraplegic level of SCI conferred an excess 16% risk of All CVD (95% Confidence interval [CI], 0.93–1.46), a fivefold risk of cerebrovascular disease (relative risk [RR] 5.06; 95% CI, 1.21–21.15), and 70% less CHD (RR 0.30; 95% CI, 0.13–0.70) when compared with paraplegics. More complete SCI was associated with an excess 44% All CVD risk (95% CI, 1.16–1.77).Conclusions: Risk of All CVD increased with increasing age, rostral level of SCI, and severity of SCI. More rostral level of SCI was associated with cerebrovascular disease, dysrhythmia, and valvular disease. Conversely, there was an inverse relationship between level of SCI and CHDSpinal Cord (2001) 39, 310–317.

Maintaining primacy of the patient perspective in the development of patient-centered patient reported outcomes

The objectives of this study were to describe and demonstrate a new model of developing patient reported outcomes (PROs) that are patient-centered, and to test the hypothesis that following this model would result in a qualitatively different PRO than if the typical PRO development model were followed. The typical process of developing PROs begins with an initial list of signs or symptoms originating from clinicians or PRO developers; patient validation of this list ensures that the list (i.e., the new PRO) is interpretable by patients, but not that patient perspectives are central or even represented. The new model begins with elicitation from clinicians and patients independently and separately. These perspectives are formally analyzed qualitatively, and the results are iteratively integrated by researchers, supporting clinical relevance and patient centeredness. We describe the application of this new model to the development of a PRO for urinary signs and symptoms in individuals with neuropathic bladder, and test the hypothesis that the two processes generate qualitatively different instruments using a national validation sample of 300 respondents. Of its 29 items, the new instrument included 13 signs/symptoms derived from existing clinical practice guidelines, with 16 others derived from the patient/focus groups. The three most-endorsed items came from the patients, and the three least-endorsed items came from clinical guidelines. Thematic qualitative analysis of the elicitation process, as well as the results from our national sample, support the conclusion that the new model yields an instrument that is clinically interpretable, but more patient-centered, than the typical model would have done in this context.

Identification of Burkholderia fungorum in the urine of an individual with spinal cord injury and augmentation cystoplasty using 16S sequencing: copathogen or innocent bystander?

IntroductionPeople with neuropathic bladder (NB) secondary to spinal cord injury (SCI) are at risk for multiple genitourinary complications, the most frequent of which is urinary tract infection (UTI). Despite the high frequency with which UTI occurs, our understanding of the role of urinary microbes in health and disease is limited. In this paper, we present the first prospective case study integrating symptom reporting, urinalysis, urine cultivation, and 16S ribosomal ribonucleic acid (rRNA) sequencing of the urine microbiome.Case presentationA 55-year-old male with NB secondary to SCI contributed 12 urine samples over an 8-month period during asymptomatic, symptomatic, and postantibiotic periods. All bacteria identified on culture were present on 16S rRNA sequencing, however, 16S rRNA sequencing revealed the presence of bacteria not isolated on culture. In particular, Burkholderia fungorum was present in three samples during both asymptomatic and symptomatic periods. White blood cells of ≥5–10/high power field and leukocyte esterase ≥2 on urinalysis was associated with the presence of symptoms.DiscussionIn this patient, there was a predominance of pathogenic bacteria and a lack of putative probiotic bacteria during both symptomatic and asymptomatic states. Urinalysis-defined inflammatory markers were present to a greater extent during symptomatic periods compared to the asymptomatic state, which may underscore a role for urinalysis or other inflammatory markers in differentiating asymptomatic bacteriuria from UTI in patients with NB. The finding of potentially pathogenic bacteria identified by sequencing but not cultivation, suggests a need for greater understanding of the relationships amongst bacterial species in the bacteriuric neuropathic bladder.

Preliminary validation of a Urinary Symptom Questionnaire for individuals with Neuropathic Bladder using Intermittent Catheterization (USQNB-IC): A patient-centered patient reported outcome

Background We developed a Urinary Symptom Questionnaire for individuals with neurogenic bladder due to spinal cord injury (SCI) and spina bifida (SB) who manage their bladders with intermittent catheterization, the USQNB-IC. This project followed an approach to patient-centered patient reported outcomes development that we created and published in 2017, specifically to ensure the primacy of the patient’s perspective and experience. Participants Two sets of responses were collected from individuals with neurogenic bladder due to either SCI (n = 336) and SB (patients, n = 179; and caregivers of patients with NB, n = 66), and three sets of “controls”, individuals with neurogenic bladder who do not have a history of UTIs (n = 49) individuals with chronic mobility impairments (neither SCI nor SB) and without neurogenic bladder (n = 46), and those with no mobility impairment, no neurogenic bladder, and no history of UTIs (n = 64). Method Data were collected from all respondents to estimate these psychometric or measurement domains characterizing a health related PRO: Reliability (minimization of measurement error; internal consistency or interrelatedness of the items; and maximization of variability that is due to “true” difference between levels of the symptoms across patients), and validity (content, reflection of the construct to be measured; face, recognizability of the contents as representing the construct to be measured; structural, the extent to which the instrument captures recognizable dimensions of the construct to be measured; and criterion, association with a gold standard). Results Evidence from these five groups of respondents suggest the instrument has face, content, criterion, convergent, and divergent validity, as well as reliability. The items were all more descriptive of our patient (focus) groups and were only weakly endorsed by the control groups. Conclusions The instrument is unique in its emphasis on, and origination from, the lived experiences of patients with neurogenic bladder who use intermittent catheterization; this preliminary psychometric evidence suggests the instrument could be useful for research and in the clinic. These results justify further development of the instrument, including formal exploration of the scoring and estimation of responsivity of these items to clinical interventions as well as patient-directed self care.

Exploration of the Personal Health Record as a Tool for Spinal Cord Injury Health Self-Management and Coordination of Care

Background: A personal health record (PHR) is a collection of electronic health data drawn from multiple sources but managed by the patient. The PHR is a strategy that enables patients to be proactive in the coordination of their care. Objective: The purpose of this clinical improvement study was to discover what worked, what did not work, and what could be improved in the initial implementation of MyPHR, a PHR tailored to patients with spinal cord injury (SCI), to make it a useful tool for care coordination and health self-management. Methods: Five individuals with chronic (>1 year) SCI carried out trial use of MyPHR. Twelve hours of interactions, including screen navigation and think-aloud reflection, were recorded and analyzed using formative research, a qualitative method and type of case study research. Results: Two key themes emerged to guide the implementation of PHR technology: selectivity in the identification of information for the patient to track, and continual support and communication with the clinical team. Conclusion: Given the volume of electronic data available to patients with SCI, the data identified to import, manage, and keep current in a PHR have to be thoughtfully selected to make sure the patient is convinced of the worth of this data record and is willing to invest the time and effort it will take to maintain it. A PHR should be implemented with a deliberate focus on its function as a tool that patients and providers use together to expand communication as they work toward their common goal of optimizing health after SCI.

Advancing SCI health care to avert rehospitalization

Abstract This commentary reflects on the high rate of health care utilization among individuals with traumatic spinal cord injury (SCI) in the first year of injury as reported by Skelton et al. in the current issue of this journal. Commentary argues that the variation in risk-adjusted rehospitalization rates suggests that there is considerable opportunity for improvement. Authors note that we need better strategies to prevent the onset of the 3 conditions that drive most of the rehospitalization, namely, urinary tract infections, pneumonia, and pressure ulcers. Commentary also urges providers to rethink and reinvent the process of care in acute, rehabilitation, and post-discharge phases of care. It recommends that SCI centers take greater advantage data resources already available such as the National Spinal Cord Injury Database to openly share and compare center-to-center differences in practice and outcomes. It also urges SCI centers to reinvent their systems of care in ways being made possible under health care reform, especially systems that make all providers in a given episode of care—from acute to rehabilitation to post-discharge care, mutually and financially accountable for both outcomes and costs including emergency room use and rehospitalization.