Objective To determine the health-care preferences of people with Multiple Sclerosis (MS).Design Cross-sectional survey using a postal questionnaire comprising standardized measures of health related quality of life (SF-36) and of depression (BDI) and original questions about issues linked to health-care, prioritized by people with MS during an earlier qualitative phase.Participants A strati®ed sample of 318 people with MS in Scotland and England.Results Questionnaires were sent to 471 people with multiple sclerosis. The 318 respondents (68%) reported a wide variation in quality of life, but on average scored signi®cantly lower than normative values in all dimensions of the SF-36. The most commonly used home treatment during the previous year was evening primrose oil, taken by almost half of the sample (47%). Use of cannabis was acknowledged by 8%. There was evidence that many preferences concerning health services were not satis®ed. For instance lack of advice about at least one MS related issue was reported lacking for three-quarters of the sample and 17% lacked advice in at least ®ve areas. Advice about exercise was the single most requested area. The most frequently consulted health professional was the GP (78%) followed by the hospital consultant (50%). The professional that respondents most commonly said they would like to have seen was a specialist MS nurse (30%). Forty-three percent of the sample said they had attended a special meeting for people with MS or disabilities. They were equally divided between those who did and who did not ®nd their last attendance helpful.Conclusions People with MS display a wide variation in their preference for services and unmet needs. Information about management (both conventional and unconventional 1 ), relevant tailored advice and access to appropriately skilled professionals should be feasible components of high quality care. This work has highlighted the value of involving people with MS in the identi®-cation of their preferences; further research is needed to show how these might be provided most e ectively.
Many aspects of living with chronic illness are unavoidable, but health or social intervention can affect others. Inappropriate personal assistance may result in dependency, which detracts from personal control and worsens quality of life. When appropriate, however, support may have beneficial consequences. By recognising the specific factors that link personal control and the illness trajectory, appropriate and timely support can be negotiated.
Many people who have urinary incontinence and who may benefit from healthcare and professional advice do not currently access UK National Health Service services, even though effective treatments are available in the community. Older people have an increased prevalence of incontinence and a correspondingly increased need for continence services. Therefore, increasing older people's access to continence services has the potential to reduce inequalities and improve quality of life. The present study aimed to identify older people with urinary incontinence living in the community, to describe and compare the characteristics of users and non-users of continence services, and to identify factors which prevent older people seeking help. A cross-sectional postal survey of patients aged over 65 years registered with four general practices in an urban area found an overall prevalence of 39% of older people with urinary incontinence, only 15% of whom had accessed services. Two-thirds of respondents who reported that they experienced urinary leakage several times per week to all the time, and up to two-thirds of those reporting leakage of moderate or large volumes of leakage had not accessed services. The majority of older people are in regular contact with health professionals, and the greatest single influence on use of services was that of being asked whether there were continence problems by a health professional. Being married or having a partner, experiencing less pain generally, and suffering relatively high frequency and volumes of urinary leakage also appeared to be associated independently with continence service use. In conclusion, there appears to be considerable unmet need for continence services. Health professionals should be aware that incontinence is an important health problem for older people, and by asking older people specifically about urinary leakage, they could reduce inequalities in use of services.
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