Estimating health needs: the impact of a checklist of conditions and quality of life measurement on health information derived from community surveys.
Knight M, Stewart-Brown S, Fletcher L.
Health Services Research Unit, Department of Public Health, University of Oxford, Institute of Health Sciences, Headington. marian.knight@epublichealth.org.uk J Public Health Med 2001 Sep;23(3):179-86
Background: Prevalence estimates of chronic disease vary according to the technique used. Questionnaire surveys may be susceptible to inaccuracies, which may be overcome by addition of a checklist of conditions. This paper presents SF-36 scores and NHS consultation rates for people reporting individual chronic diseases or disabilities in two questionnaire surveys, one of which employed a checklist and one of which did not. We aimed to document differences in estimates of disease prevalence, and to determine whether or not subjective impact on quality of life is the same in people recruited by a checklist as in those who volunteer that they have a chronic disease or disability without the prompt of a checklist. We use these data to estimate the contribution that different chronic diseases and disabilities make to the burden of disease in the community.
p. Methods: Data were collected in two postal questionnaire surveys conducted in 1991 and 1997 with response rates of 72 per cent and 64 per cent. Both questionnaires included a question on long-standing illness, disability or infirmity, together with the SF-36 health status measure. Respondents to the 1991 survey were asked to specify their illness in a free text response, whereas the 1997 survey offered a checklist of conditions. Prevalence rates of each condition were calculated, together with an ‘escalation factor’ representing the increase in reporting of specific diseases between the surveys. SF-36 domain and component summary scores were calculated overall and for the groups reporting individual chronic diseases or disabilities. Disease-specific NHS consultation rates were calculated for both surveys.
p. Results: The overall reported rate of chronic disease and disability increased from 28 per cent in 1991 to 42 per cent in 1997. Reported levels of mental health problems and of conditions with a perceived psychosomatic element increased substantially, whereas rates of well-defined conditions were similar. The pattern of SF-36 scores for those reporting chronic disease or disability was similar in the two surveys in spite of very different prevalence rates, and respondents reporting chronic disease had similar levels of health service use. This suggests that they were reporting conditions with similar levels of impact on quality of life. Heart disease, arthritis and mental health problems had the greatest impact on quality of life, and asthma and hypertension the least.
p. Conclusion: Evidence from SF-36 scores and NHS consultation rates suggests that addition of a checklist of conditions to this community health survey encouraged reporting of illnesses by the genuinely ill and not merely by those who are less severely affected by their disease. This method appears to give a more accurate reflection of health needs than information derived from routine data sources. The combination of prevalence data combined with subjective assessment of quality of life allows an alternative perspective of health needs. This approach highlights the relative importance of musculo-skeletal problems, particularly back pain, and mental health problems to the burden of disease, and the relative lack of importance of conditions such as asthma. It presents a contrast to studies based on other methods of health needs assessment.
Functional changes in persons aging with spinal cord injury.
Thompson L.
Rehabilitation Research and Training Center on Aging with Spinal Cord Injury, Rancho Los Amigos National Rehabilitation Center, Downey, CA 90242, USA. Assist Technol 1999;11(2):123-9
Declines in general physical function and the effect of these changes on activities of daily living and needs for assistance were assessed in 150 individuals with spinal cord injury (SCI). The sample consisted of outpatients returning for follow-up at the spinal cord injury clinic at Rancho Los Amigos National Rehabilitation Center in Downey, CA. The average duration of injury of the sample was 13 years (range 1-37), and average age was 38 years (range 18-64). Twenty-four percent of those sampled experienced a decline or change in their physical function within the last 5 years. Individuals experiencing declines were significantly older than those without changes, averaging 45 years versus 36 years. The group with change also had a longer duration of injury, averaging 18 years versus 11 years compared to the group reporting no declines. Fatigue was the most frequently reported problem, followed by pain and weakness. Over half of the group with changes required additional assistance with activities of daily living (ADLs). Family members were the primary helpers for both ADLs and instrumental activities of daily living (IADLs) for those persons experiencing changes. The use of assistive technology, primarily equipment for bathing, toileting, and low technology devices, increased with time. The increased vulnerability to loss of function in persons with advancing age and duration of injury in this population with SCI suggests the need for early preventative measures, routine assessments to detect changes, and access to health care and supportive services to alleviate or minimize the effect of these changes.
Predicting satisfaction with assistive technology for a sample of adults with new spinal cord injuries.
Scherer MJ, Cushman LA.
University of Rochester Medical Center, 601 Elmwood Avenue, Rochester, NY 14642, USA. IMPT97@aol.com Psychol Rep 2000 Dec;87(3 Pt 1):981-7
To assess the validity of the Assistive Technology Device Predisposition Assessment-Consumer Form for persons with a new spinal cord injury, 10 men and 10 women completed the scale and the Satisfaction with Life Scale and the Brief Symptom Inventory while in acute rehabilitation. One month postdischarge, subjects completed the Perceived Needs Inventory and rated their satisfaction with assistive technology. Significant positive correlations between items of the Assistive Technology Device Predisposition Assessment and Satisfaction with Life Scale (and their significant negative correlations with scores on the Brief Symptom Inventory-Depression) suggest the selected Assistive Technology Device Predisposition Assessment items measure quality of life (concurrent validity). Only Assistive Technology Device Predisposition Assessment scores predicted satisfied use 1-mo. postdischarge as measured by the Perceived Needs Inventory.
What do people with MS want and expect from health-care services?
Somerset M, Campbell R, Sharp DJ, Peters TJ.
Division of Primary Health care, University of Bristol, UK. m.somerset@bris.ac.uk Health Expect 2001 Mar;4(1):29-37
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.
p. Participants: A stratified sample of 318 people with MS in Scotland and England.
p. 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 significantly 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 satisfied. 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 five 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 find their last attendance helpful.
p. Conclusion: People with MS display a wide variation in their preference for services and unmet needs. Information about management (both conventional and unconventional), 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 identification of their preferences; further research is needed to show how these might be provided most effectively.