Adolescents with a chronic condition: challenges living, challenges treating

doi:10.1016/S0140-6736(07)60370-5

The Lancet

Volume 369, Issue 9571, 28 April–4 May 2007, Pages 1481-1489

https://doi.org/10.1016/S0140-6736(07)60370-5 Get rights and content

Summary

In this review, we aim to focus attention on the interaction between adolescents with chronic conditions and the health systems that support them. At least 12% of adolescents live with a chronic condition. Some conditions are characterised by increasing incidence (eg, diabetes) or improving survival rates (eg, cystic fibrosis), while others are concerning because of differentially poorer outcomes in adolescents in comparison to both children and adults (eg cancer). Growing evidence suggests that young people with chronic conditions are doubly disadvantaged—engaging in risky behaviours to at least similar if not higher rates as healthy peers, while having the potential for greater adverse health outcomes from these behaviours. In addition to efforts at improving survival, in order to improve their life chances, we need to better understand how the social and emotional outcomes of young people with a chronic disea se can be improved, and better support young people's emerging capacity for self-management.

Section snippets

Challenges in definition and epidemiology

The shortage of age-specific epidemiological data is one factor limiting more focused policy and planning considerations for adolescents with chronic conditions. Many surveys and reports of chronic disease fail to recognise adolescence as a developmental stage by grouping adolescents with children (0–14 years) or with adults (15–34 years).10, 11

When adolescence is recognised, the choice of lower and upper age limits is variable. This inconsistency limits national, let alone international,

Effect of chronic conditions: disease-specific or generic understandings?

A large amount of disease-specific published work describes the effect of individual diseases and disabilities on adolescents and their families, whether framed in terms of adjustment or coping, comorbid depression and anxiety, or more recently, in terms of health-risk behaviours. Appreciation of the similarities and differences between specific diseases and groups of disorders could inform practice and policy. However, the traditional separation of health-care research, practice, and policy in

Quality health care

Despite having more frequent contact with health-care services than do healthy young people,⁷⁸ adolescents with chronic conditions receive suboptimal general and preventive care. In the USA, the National Ambulatory Medical Care Survey queries doctors about their counselling of adolescents about tobacco use. Asthma is the only chronic condition with adequate sample size to analyse the effect of the condition on counselling rates. In the 1991 and 1996 surveys, notwithstanding the greater risk of

Implications and future directions

Despite these developments, more consistent and rigorous monitoring of health status, including quality of life, mental health, and risk-taking behaviours, would provide stronger evidence for clinical and preventive efforts that aim to mediate the effect of chronic conditions on the lives of young people, and their families. We were unable to identify any longitudinal generic cohorts that had tried to identify the effect of social, economic, educational, and pubertal transitions on health

Search strategy and selection criteria

We searched MEDLINE (2000–06) and the Cochrane Library (any age or date) using the search terms “chronic illness”, “adolescence” or “adolescents” (“adol^*”), “risk factors”, “psychosocial outcomes”, “self-management”, “self-efficacy”, “adherence”, “compliance”, and randomised controlled trial interventions in various combinations. No language restriction was used. Key references published before this period were identified through scrutiny of commonly cited papers and review articles that showed

References (116)

JE Epping-Jordan et al.
Preventing chronic diseases: taking stepwise action
Lancet
(2005)
V Fuster et al.
MDGs: chronic diseases are not on the agenda
Lancet
(2005)
WA Bleyer et al.
National cancer clinical trials: children have equal access; adolescents do not
J Adolesc Health
(1997)
DP Orr et al.
Adolescent health care: perceptions and needs of the practicing physician
J Adolesc Health Care
(1987)
D Hardoff et al.
Attitudes and practices of Israeli physicians toward adolescent health care. A national survey
J Adolesc Health
(1999)
LH Bearinger et al.
Nursing competence in adolescent health: anticipating the future needs of youth
J Prof Nursing
(1992)
PW Newacheck et al.
Prevalence and impact of multiple childhood chronic illnesses
J Pediatr
(1994)
REK Stein et al.
Framework for identifying children who have chronic conditions: the case for a new definition
J Pediatrics
(1993)
CD Bethell et al.
Identifying children with special health care needs: Development and evaluation of a short screening tool
Ambulatory Pediatrics
(2002)
R Geist et al.
Psychosocial issues in the child with chronic conditions
Best Pract Res Clin Gastroenterol
(2003)

LS Valencia et al.

Sexual activity and other high-risk behaviors in adolescents with chronic illness: a review

J Pediatr Adolesc Gynecol

(2000)

M Choquet et al.

Sexual behaviour among adolescents reporting chronic conditions: a French national survey

J Adolesc Health

(1997)

JC Suris et al.

Sexual behavior of adolescents with chronic disease and disability

J Adolesc Health

(1996)

M Wakefield et al.

Smoking-related beliefs and behaviour of South Australians with diabetes

Aus J Pub Health

(1995)

RC Stern et al.

Recreational use of psychoactive drugs by patients with cystic fibrosis

J Pediatr

(1987)

PW Campbell et al.

Association of poor clinical status and heavy exposure to tobacco smoke in patients with cystic fibrosis who are homozygous for the F508 deletion

J Pediatr

(1992)

M Nikpour et al.

Premature atherosclerosis in systemic lupus erythematosis

Rheum Dis Clin North Am

(2005)

QE Whiting-O'Keefe et al.

Methotrexate and histologic hepatic abnormalities: a meta-analysis

Am J Med

(1991)

PP DiNapoli et al.

The marginalization of chronically ill adolescents

Nurs Clin N Am

(2002)

G Kritsotakis et al.

What is social capital and how does it relate to health?

Int J Nursing Studies

(2004)

MD Resnick

Resilience and protective factors in the lives of adolescents

J Adolesc Health

(2000)

CA Olsson et al.

Adolescent resilience: a concept analysis

J Adolesc

(2003)

G Carroll et al.

Adolescents with chronic disease. Are they receiving comprehensive health care?

J Adolesc Health Care

(1983)

CJ Homer et al.

Improving care for children with attention deficit hyperactivity disorder: assessing the impact of self-assessment and targeted training on practice performance

Ambul Pediatr

(2004)

DS Rosen et al.

Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine

J Adol Health

(2003)

WA Bleyer

Cancer in older adolescents and young adults: epidemiology, diagnosis, treatment, survival, and importance of clinical trials

Med Pediatr Oncol

(2002)

L Miauton et al.

Chronic illness, lifestyle and emotional health in adolescence: results of a cross-sectional survey on the health of 15–20-year-olds in Switzerland

Eur J Pediatrics

(2003)

FC Veit et al.

Barriers to effective primary health care for adolescents

Med J Austr

(1996)

Rural and Regional Health and Aged Care Services Division. Victorian Government Department of Human Services. Victorian Burden of Disease Study

Mortality and morbidity in 2001

(2005)

Selected chronic diseases among Australia's children

(2005)

PW Newacheck et al.

An epidemiologic profile of children with special health care needs

Pediatr

(1998)

EC Perrin et al.

Issues involved in the definition and classification of chronic heath conditions

Pediatr

(1993)

HJ Loonen et al.

Pediatricians overestimate importance of physical symptoms upon children's health concerns

Medical Care

(2002)

LM Youngblade et al.

Congruence between parents' and adolescents' reports of special health care needs in a title XX1 program

J Pediatr Psychol

(2003)

FC Verhulst et al.

Agreement between parents' reports and adolescents' self-reports of problem behavior

J Child Psychol Psychiatr Allied Disciplines

(1992)

PW Newacheck et al.

Childhood chronic illness: prevalence, severity, and impact

Am J Pub Health

(1992)

PW Newacheck et al.

Prevalence and impact of chronic illness among adolescents

Am J Dis Child

(1991)

Australia's young people: their health and wellbeing 2003

(2003)

IB Pless et al.

Chronic childhood disorder: promoting patterns of adjustment

(1975)

M McPherson et al.

A new definition of children with special health care needs

Pediatrics

(1998)

The national survey of children with special health care needs chartbook 2001

(2004)

ME Msall et al.

Functional disability and school activity limitations in 41 300 school-age children: relationship to medical impairments

Pediatrics

(2003)

CA Olsson et al.

Chronic illness in adolescents: the role of peer support groups

Clin Child Psychol Psychiatr

(2005)

JC Suris et al.

Sex, drugs and chronic illness: health behaviours among chronically ill youth

Eur J Pub Health

(2005)

C Eiser et al.

Quality-of life measures in chronic diseases of childhood

Health Technol Assess

(2001)

C Eiser

Children's quality of life measures

Arch Dis Child

(1997)

MT Britto et al.

Differences between adolescents' and parents' reports of health-related quality of life in cystic fibrosis

Pediatr Pulmonol

(2004)

SK Parsons et al.

Health-related quality of life in pediatric bone marrow transplant survivors: according to whom?

Int J Cancer

(1999)

R Levi et al.

Health-related quality of life in childhood cancer: discrepancy in parent-child reports

Int J Cancer

(1999)

M Wake et al.

The child health questionnaire in children with diabetes: cross-sectional survey of parent and adolescent-reported functional health status

Diabetic Med

(2000)

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SeriesAdolescents with a chronic condition: challenges living, challenges treating

Summary

Section snippets

Challenges in definition and epidemiology

Effect of chronic conditions: disease-specific or generic understandings?

Quality health care

Implications and future directions

Search strategy and selection criteria

Lancet

Lancet

J Adolesc Health

J Adolesc Health Care

J Adolesc Health

J Prof Nursing

J Pediatr

J Pediatrics

Ambulatory Pediatrics

Best Pract Res Clin Gastroenterol

J Pediatr Adolesc Gynecol

J Adolesc Health

J Adolesc Health

Aus J Pub Health

J Pediatr

J Pediatr

Rheum Dis Clin North Am

Am J Med

Nurs Clin N Am

Int J Nursing Studies

J Adolesc Health

J Adolesc

J Adolesc Health Care

Ambul Pediatr

J Adol Health

Cancer in older adolescents and young adults: epidemiology, diagnosis, treatment, survival, and importance of clinical trials

Med Pediatr Oncol

Chronic illness, lifestyle and emotional health in adolescence: results of a cross-sectional survey on the health of 15–20-year-olds in Switzerland

Eur J Pediatrics

Barriers to effective primary health care for adolescents

Med J Austr

Rural and Regional Health and Aged Care Services Division. Victorian Government Department of Human Services. Victorian Burden of Disease Study

Mortality and morbidity in 2001

Selected chronic diseases among Australia's children

An epidemiologic profile of children with special health care needs

Pediatr

Issues involved in the definition and classification of chronic heath conditions

Pediatr

Pediatricians overestimate importance of physical symptoms upon children's health concerns

Medical Care

Congruence between parents' and adolescents' reports of special health care needs in a title XX1 program

J Pediatr Psychol

Agreement between parents' reports and adolescents' self-reports of problem behavior

J Child Psychol Psychiatr Allied Disciplines

Childhood chronic illness: prevalence, severity, and impact

Am J Pub Health

Prevalence and impact of chronic illness among adolescents

Am J Dis Child

Australia's young people: their health and wellbeing 2003

Chronic childhood disorder: promoting patterns of adjustment

A new definition of children with special health care needs

Pediatrics

The national survey of children with special health care needs chartbook 2001

Functional disability and school activity limitations in 41 300 school-age children: relationship to medical impairments

Pediatrics

Chronic illness in adolescents: the role of peer support groups

Clin Child Psychol Psychiatr

Sex, drugs and chronic illness: health behaviours among chronically ill youth

Eur J Pub Health

Quality-of life measures in chronic diseases of childhood

Health Technol Assess

Children's quality of life measures

Arch Dis Child

Differences between adolescents' and parents' reports of health-related quality of life in cystic fibrosis

Pediatr Pulmonol

Health-related quality of life in pediatric bone marrow transplant survivors: according to whom?

Int J Cancer

Health-related quality of life in childhood cancer: discrepancy in parent-child reports

Int J Cancer

The child health questionnaire in children with diabetes: cross-sectional survey of parent and adolescent-reported functional health status

Diabetic Med

Series
Adolescents with a chronic condition: challenges living, challenges treating