RESUMEN
PURPOSE: In a previous retrospective cohort study we challenged the assumption that lower urinary tract reconstruction improves health related quality of life in spina bifida cases. We readdressed this issue prospectively in a new series of patients. MATERIALS AND METHODS: A total of 31 consecutive incontinent patients with spina bifida undergoing reconstruction with a continent stoma with or without augmentation, with or without bladder neck reconstruction and with or without cecostomy were assessed preoperatively and 6 months postoperatively with the Parkin disease specific health related quality of life score. The instrument stratifies patients by ages 12 years or younger and 13 years or older. An additional 4-item questionnaire was used to score bladder and bowel continence. RESULTS: There was no significant change in health related quality of life following surgery in either age group. The median score changed from 167 to 174 in patients 12 years old or younger (p = 0.74) and from 199 to 193 in patients 13 years old or older (p = 0.42) despite a significant improvement in scores on all continence questions (p <0.05). In patients 12 years old or younger there was significant improvement in 3 items in the domains of independence and emotional expression (p <0.05). In adolescents 4 items changed significantly, and all were related to the independence and emotional domains (p <0.05). CONCLUSIONS: Despite improvement in some question items we did not note an improvement in overall quality of life following reconstruction. Correcting only 1 system in a profound multisystem disability may be insufficient to improve health related quality of life or perhaps only caregiver quality of life is improved. The impact of lower urinary tract reconstruction on quality of life in patients with spina bifida requires further assessment before improvements are assumed.
Asunto(s)
Calidad de Vida , Disrafia Espinal/complicaciones , Encuestas y Cuestionarios , Incontinencia Urinaria/etiología , Incontinencia Urinaria/cirugía , Adolescente , Niño , Preescolar , Femenino , Humanos , Masculino , Estudios Prospectivos , Procedimientos Quirúrgicos Urológicos , Adulto JovenRESUMEN
The Anxious Bay beach litter clearance is the longest running annual survey of ocean-based litter in Australia. It's remoteness from centres of human population and location (with respect to prevailing winds and currents) make it an ideal place for monitoring ocean or ship-based litter in Australia's southern oceans and particularly, the Great Australian Bight. Over the 1991-1999 period, a large but gradual decline in the amount of beach washed litter was recorded (with minor peaks recorded during the 1992 and 1994 surveys). Beach washed litter decreased by approximately 86%, from 344 kg recorded in 1991 (13.2 kg/km) to 49 kg in 1999 (i.e. 1.9 kg/km), reaching a maximum of 390 kg in 1992 (or 15 kg/km of beach). However, a sharp increase in litter was recorded in 2000 (i.e. 252 kg or 9.7 kg/km). This increase in litter yield in 2000 is probably due to stronger than average onshore surface flow (or Ekman Transport) in the western Eyre Peninsula and Bight region. Prior to the survey in 2000, the results appeared to indicate that ocean litter on Anxious Bay beach was beginning to level out at around 50-70 kg/year (i.e. 2-3 kg/km). As the beach surveys involve the assumption that the beach is completely cleared of litter, this may represent a baseline level for ocean-based litter in the region. The yields and type of litter collected from the annual survey indicates that the majority of litter washed ashore originates from commercial fishing activities within the Great Australian Bight. Most of the fishing-related litter was directly sourced to the Southern Rock Lobster Fishery (i.e. bait buckets, baskets, pots), the Great Australian Bight Trawl Fishery (i.e. codends, trawl nets) and the Southern Shark Fishery (i.e. monofilament gillnets and longlines). Between 1994 and 1999, large reductions were observed in the amount of bait straps (77% reduction), lobster bait baskets/buckets (86% reduction), nets/ropes (62% reduction) and floats/buoys (83% reduction). Significantly, fishing-related litter in the Bight has reduced at a slower rate than domestic litter. While the level of glass and soft plastics on the beach have both reduced by almost 93% (i.e. 103-7 kg and 119-8 kg, respectively), the level of hard plastics, has diminished at a slower rate, with reductions of only 75% (i.e. 122-30 kg). Some fisheries (i.e. rock lobster, Southern Shark Fishery) have shown marked reductions in fishing-related litter. This is probably due, to some extent, to significant reductions in fishing effort in the region, although this requires further investigation. The information from the Anxious Bay beach litter survey is crucial in monitoring trends in ocean litter in Australia's southern oceans and compliance with international litter regulations. While fishing-related litter remains the major source of ship-based or ocean litter in Australia's southern oceans, the continued reduction in ship-based litter since 1991 supports increasing compliance to MARPOL (Annex V) by commercial fisheries and shipping in the Great Australian Bight. While Australia participates in marine debris monitoring programs in the Antarctic (under CCAMLR), there is currently no national program or management framework to assess, manage and monitor ocean-based litter along Australia's coasts, and monitor compliance with MARPOL. Apart from the commitments under CCAMLR for Antarctic (and sub-Antarctic) marine environments, there are no other regional programs, guidelines or monitoring protocols or to assess and manage ocean litter in the Southern Ocean.