Developing a web-based information resource for palliative care: an action-research inspired approach.

BACKGROUND: General Practitioners and community nurses rely on easily accessible, evidence-based online information to guide practice. To date, the methods that underpin the scoping of user-identified online information needs in palliative care have remained under-explored. This paper describes the benefits and challenges of a collaborative approach involving users and experts that informed the first stage of the development of a palliative care website 1. METHOD: The action research-inspired methodology included a panel assessment of an existing palliative care website based in Victoria, Australia; a pre-development survey (n = 197) scoping potential audiences and palliative care information needs; working parties conducting a needs analysis about necessary information content for a redeveloped website targeting health professionals and caregivers/patients; an iterative evaluation process involving users and experts; as well as a final evaluation survey (n = 166). RESULTS: Involving users in the identification of content and links for a palliative care website is time-consuming and requires initial resources, strong networking skills and commitment. However, user participation provided crucial information that led to the widened the scope of the website audience and guided the development and testing of the website. The needs analysis underpinning the project suggests that palliative care peak bodies need to address three distinct audiences (clinicians, allied health professionals as well as patients and their caregivers). CONCLUSION: Web developers should pay close attention to the content, language, and accessibility needs of these groups. Given the substantial cost associated with the maintenance of authoritative health information sites, the paper proposes a more collaborative development in which users can be engaged in the definition of content to ensure relevance and responsiveness, and to eliminate unnecessary detail. Access to volunteer networks forms an integral part of such an approach.

Urolithiasis associated with indinavir in a patient with spinal cord injury.

OBJECTIVE: To report a case of indinavir-induced urolithiasis, and the greater risk of this occurrence in individuals with spinal cord injury (SCI) who require fluid restriction for an intermittent catheterization program (ICP). METHODS: Case report. RESULTS: A 38-year-old man with a T4 ASIA A SCI (according to the American Spinal Injury Association classification scale) and human immunodeficiency virus (HIV) infection was using an ICP and taking indinavir (a protease inhibitor) as part of his antiviral regimen. Cystoscopy was performed to rule out recurrent urethral condylomata. He was found to have a bladder stone measuring 0.5 cm x 0.5 cm x 0.3 cm, which, on analysis, was composed of indinavir (100% exterior, 90% interior). The bladder stone was removed under direct visualization. The plain abdominal radiograph did not reveal any stones. CONCLUSION: Indinavir is a frequently used drug for the treatment of HIV that has the potential to induce urinary lithiasis. This is particularly problematic for individuals with SCI who are on fluid restriction and an ICP. Therefore, cystoscopy and monitoring for indinavir-induced urolithiasis should be undertaken in individuals with SCI who are taking indinavir. Considerations include switching to a different protease inhibitor or choosing an entirely new HIV drug cocktail with less potential for urolithiasis.

Evaluation of cranberry supplement for reduction of urinary tract infections in individuals with neurogenic bladders secondary to spinal cord injury. A prospective, double-blinded, placebo-controlled, crossover study.

OBJECTIVE: To determine the effectiveness of cranberry supplement at preventing urinary tract infections (UTIs) in persons with spinal cord injury (SCI). DESIGN: A prospective, double-blinded, placebo-controlled, crossover study. PARTICIPANTS: 21 individuals with neurogenic bladders secondary to SCI. MAIN OUTCOME MEASURES: Favorable or unfavorable response of cranberry supplement vs placebo on urinary bacterial counts and white blood cell (WBC) counts and the combination of bacterial and WBC counts. METHODS: Individuals with neurogenic bladders due to SCI were recruited and randomly assigned to standardized 400-mg cranberry tablets or placebo 3 times a day for 4 weeks. After 4 weeks and an additional 1-week "washout period," participants were crossed over to the other group. Participants were seen weekly, during which a urine analysis was obtained. UTI was defined as significant bacterial or yeast colony counts in the urine and elevated WBC counts (WBC count > or = 10 per high power field) in centrifuged urine. Participants with symptomatic infections were treated with appropriate antibiotics for 7 days and restarted on the cranberry tablet/ placebo after a 7-day washout period. Urinary pH between the cranberry and placebo groups was compared weekly. Data were analyzed using the Ezzet and Whitehead's random effect approach. RESULTS: There was no statistically significant treatment (favorable) effect for cranberry supplement beyond placebo when evaluating the 2 treatment groups for bacterial count, WBC count, or WBC and bacterial counts in combination. Urinary pH did not differ between the placebo and cranberry groups. CONCLUSION: Cranberry tablets were not found to be effective at changing urinary pH or reducing bacterial counts, urinary WBC counts, or UTIs in individuals with neurogenic bladders. Further long-term studies evaluating specific types of bladder management and UTIs will help to determine whether there is any role for the use of cranberries in individuals with neurogenic bladders.

Accuracy of individuals with spinal cord injury at predicting urinary tract infections based on their symptoms.

OBJECTIVE: To determine whether individuals with spinal cord injuries (SCIs) who complain of symptoms of a urinary tract infection (UTI) actually have a UTI. DESIGN: A 9-month prospective case review. PARTICIPANTS: One hundred and forty-seven persons with SCI who presented to an outpatient urology clinic with symptoms they attributed to a UTI. MAIN OUTCOME MEASURES: Presence or absence of a UTI as determined by signs and symptoms of a UTI and a microscopic urine analysis (UA) for white blood cell (WBC) and bacterial colony counts. METHODS: A UTI was defined as new onset of clinical signs and symptoms, significant bacterial colony counts in the urine, and evidence of tissue invasion with elevated WBC count > or = 10/high power field in the urine. Evaluation of each individual included history, physical examination, and UA with a culture and sensitivity. Evaluation for other medical problems was undertaken if history, physical examination, and laboratory results were not consistent with a UTI. RESULTS: Sixty-one percent (90/147) of SCI persons were accurate in predicting the presence of a UTI based on their symptoms; 39% (57/147) were not accurate. In the group of 57 persons who were not accurate in predicting whether they had a UTI, 12 persons had other medical problems including fecal impaction, bowel obstruction, dehydration, heat intolerance, glucosuria, other infectious processes, respiratory problems, and neurologic problems. The remaining 45 had bacteriuria with no pyuria. The type of bladder management did not have an impact on the accuracy of predicting the presence or absence of a UTI (P = 0.03). CONCLUSION: Individuals with SCI were frequently not accurate at predicting whether they had a UTI based on their symptoms.