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Rapid Responses: Rapid Responses published:
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Half a growth chart
- Tim Cole (26 March 2005)
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Adolescents, chronic illness and disability
- Joav Merrick, Isack Kandel, and Mohammed Morad (29 March 2005)
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Costs for families caring for a child with cancer
- Christine Eiser, Penney Upton (17 May 2006)
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What is Health?
- Hugh Mann (3 September 2006)
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Tim Cole, professor of medical statisics Institute of Child Health WC1N 1EH
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The ABC of Adolescence: Chronic disease and disability (p 721) shows a graph of a short girl's height and weight plotted over 6 years on the British 1990 growth chart. The British chart was designed in a 9-centile format (BMJ 1994;308:641) to pick up extreme patterns of growth, covering the 0.4th to the 99.6th centile. But curiously the graph leaves out five of the 9 centiles, giving just the 25th, 50th, 75th and 91st. The three lower centiles (0.4th, 2nd and 9th) are omitted, so despite the girl's being short and underweight it's impossible to judge exactly what centile she's on or how her centile has changed over time. I'm not clear why half the chart has been left out, but please, if it has to be done, do leave out the half where the patient isn't. Competing interests: I was involved in the derivation and design of the British 1990 reference |
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Joav Merrick, Medical director National Institute of Child Health and Human Development, Office Med Director,Jerusalem, Israel, Isack Kandel, and Mohammed Morad
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EDITOR---The prevalence of chronic illness or disability in adolescence has increased in recent years due to medical advances and adolescents are now more than ever able to lead a productive life even in spite of serious illness. In the past children with many diseases would not reach adolescence, but over the last decade or more the survival rate for children with cystic fibrosis has increased by 700%, for spina bifida with 200% and 300% for congenital heart disease (1). The old morbidity (infectious disease, poor housing, poverty, lack of immunisation) has been exchanged with the new morbidty of adolescence, where a longer life expectancy is followed by an increase in life long disability. PSYCHOSOCIAL AND FAMILY ASPECTS Chronic illness can have significant psychological and social consequences and present many challenges for both the adolescent, but also for the family involved. A recent study from Australia (2) with in-depth interviews of 35 adolescents with chronic illness revealed five broad themes: control, emotional reactions, acceptance, coping strategies and a search for meaning. They found that many of these young people were relatively resilient in the face of adjustment challenges. Another study (3) used data from the 1994-1995 NIHS to examine family stressors and psychosocial adjustment. This study included 5,089 children aged 6-17 years with disability and 24,820 without. Children with disabilities were more likely to be male, black and 11-14 years old. These children with disability were more likely to be in poor health, have activity limitattions and functional impairment in self care or mobility, communication and learning. A total of 11.1% of children with disabilities experienced poor psychological adjustment with the most common psychosocial problems being peer relations (16.9%) and hostility (12.6%). Mothers of children with disabilities were more likely to be divorced, separated or never married, lower levels of education and not employed. These mothers also had significantly higer rates of poor health, activity limitations, distress and depression. More than 21% of families with a disabled child experienced a work, sleep and a financial burden with work related burdens being most common (19.3%). Families with a disabled child were also more likely to be under the poverty line. CONCLUSION More adolescents are found to have chronic illness and some of these will be with life long disability. Several studies, especially in the United States with the National Health Interview Surveys (NHIS), have over time showed an increase in the prevalence of disability among adolescents, focused on issues concerned with insurance, examined health utilization and school absence. James M Perrin from Harvard Medical school in his recent review (4) has reflected on the need for future research in the area of health service for adolescents with disabilities: · In clinical and health service epidemiology there is a need for better describtion of the changing numbers of adolescents with disabilities and how their functioning has been affected · Research on how to minimize the effects of disability on ability to engage in age-appropriate activities · What makes a good transition to adult health care · Research on social and structural determinants of new epidemics of chronic conditions and what determines if the condition with bring disability · Research on what treatment and management that works and the bost benefits · The role of the family and the role of primary and subspecialty services · Comprehensive studies of expenditures and utilization of services · Research on appropriate measures of health status and quality of life AFFILIATION Joav Merrick, MD, DMSc is professor of child health and human development, director of the National Institute of Child Health and Human Development and the medical director of the Division for Mental Retardation, Ministry of Social Affairs, Jerusalem, Israel. E-mail: jmerrick@internet-zahav.net. Website: www.nichd-israel.com Isack Kandel, MA, PhD is a senior lecturer at the Faculty of Social Sciences, Department of Behavioral Sciences and Social Work, Academic college of Judea and samaria, Ariel, Israel. E-mail: Kandeli@aquanet.co.il Mohammed Morad, MD, is a family physician, the medical director of a large area clinic in the city of Beer-Sheva, Israel. E-mail: morad62@barak-online.net REFERENCES 1. Blum RW. Chronic illness and disability in adolescence. J Adolesc Health 1992;13:364-8. 2. Olsson CA, Bond L, Johnson MW, Forer DL, Boyce MF. Adolescent chronic illness: A qialitative study of psychosocial adjustment. Ann Acad Med Singapore 2003:32:43-50. 3. Witt WP, Riley AW, Coiro MJ. Childhood functional status, family stressors and psychosocial adjustment among school-aged children with disabilities in the United States. Arch Pediatr Adolesc Med 2003;157:687- 95. 4. Perrin JM. Health services research for children with disabilities. Milbank Quarterly 2002;80(2):303-24. Competing interests: None declared |
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Christine Eiser, Professor of Child Health Psychology Child and family Research Group, University of Sheffield, Penney Upton
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We read with interest the clinical review by Yeo and Sawyer (March 2005) concerning chronic illness and disability in adolescence. They note that there is a financial cost for families in caring for chronically ill adolescents, although they give no indication of how extensive such financial burden might be. This is an important issue for families with sick children, and we would like to draw attention to the financial burden incurred specifically by families caring for children with cancer. In a questionnaire survey carried out during 2005 and involving 145 parents, 55% of families spent an additional £50-100 a week, and 18% more than £100 over and above pre-illness expenditure. Costs of travel to treatment centers, overnight stays, phone-calls, childcare for siblings, and presents were highest in the first six months. Mothers were more likely than fathers to give up work, or reduce the number of hours worked to care for their child. Most families (69.7%) successfully claimed Disability Living Allowance (higher rate) on first application. However, the statutory 84-day wait before benefits can be claimed imposes a huge unnecessary burden. It is vital that this wait period is waived and a bridging payment implemented to cover costs whilst a claim is processed, in order to ease the pressure for many families. Competing interests: None declared |
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Hugh Mann, physician Eagle Rock, MO 65641
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Health is metabolic efficiency. Sickness is metabolic inefficiency. Nobody is totally healthy or totally sick. Each of us is a unique combination of health and sickness. And each of us has a unique combination of abilities and disabilities, both emotional and physical. As we grow up, we learn that we are loved for our abilities but hated for our disabilities. This happens at home, at play, at school, and at work. Sometimes, this even happens with our doctors, especially if our disabilities mystify them or remind them of their own disabilities. So, we try to hide our disabilities from people and from ourselves. This charade undermines our relationships and our self-esteem. We learn to fear society and hate ourselves. Self-hatred is the most debilitating sickness. It interferes with our ability to seek and accept help. And everybody needs help. How do we free ourselves from self-hatred? First, we reclaim our disabilities, whether society accepts them or not. This means that we learn to accept ourselves. Then, we cope with our disabilities. This means that we learn to take care of ourselves. Competing interests: None declared |
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