Developing a conceptual model of teenage and young adult experiences of cancer through meta-synthesis.

OBJECTIVES To systematically identify and analyse published research exploring teenage and young adult experience of cancer to inform the development of a patient-reported outcome survey intended to explore if a correlation exists between specialist cancer care and quality of life for young people with cancer. DESIGN Systematic review and meta-synthesis. DATA SOURCES Medline, CINAHL Plus and PsycInfo were searched for literature published between 1987 and 2011. REVIEW METHODS Search terms included those for: population (e.g. teen, young adult); intervention (e.g. cancer); outcome (e.g. experience); and study type (e.g. qualitative). INCLUSION CRITERIA adolescents and young adults were both represented; diagnosis of cancer; published in English; and used qualitative methods to report an aspect of the cancer experience. Studies were excluded if they were reporting: palliative care experience; secondary data; or proxy views, i.e. parent or health professional perspective. Methodological quality was assessed using Cesario criteria and meta-synthesis involved deconstruction and decontextualising findings to identify common themes. RESULTS Three hundred and fifteen studies were identified, 17 fulfilled the inclusion criteria. Of these, most (59%), were assessed as being high quality, none were rated poor. Nine common themes were identified: psychosocial function, importance of peers, experience of healthcare, importance of support, impact of symptoms, striving for normality, impact of diagnosis, positive experiences, and financial consequences. CONCLUSIONS The conceptual model developed from the meta-synthesis depicts the mediators and consequences of cancer care that impact on young people's quality of life after a cancer diagnosis. The model highlights areas that require further exploration.

[1]  M Geraci,et al.  Survival from cancer in teenagers and young adults in England, 1979–2003 , 2008, British Journal of Cancer.

[2]  C. Dolbear,et al.  Where do teenagers and young adults receive treatment for cancer? , 2007, Journal of public health.

[3]  L. von Essen,et al.  Positive and negative consequences with regard to cancer during adolescence. Experiences two years after diagnosis , 2007, Psycho-oncology.

[4]  T. Schacker,et al.  Clinical and Epidemiologic Features of Primary HIV Infection , 1996, Annals of Internal Medicine.

[5]  D. Osoba,et al.  Measuring health-related quality of life. , 1999, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[6]  C. C. Bailey,et al.  Intensification of treatment and survival in all children with lymphoblastic leukaemia: results of UK Medical Research Council trial UKALL X , 1995, The Lancet.

[7]  J. Cayuela,et al.  Should adolescents with acute lymphoblastic leukemia be treated as old children or young adults? Comparison of the French FRALLE-93 and LALA-94 trials. , 2003, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[8]  J. Varni,et al.  The PedsQL™ 4.0 Generic Core Scales Young Adult Version , 2009, Journal of health psychology.

[9]  S. Phipps,et al.  Optimism and pessimism in children with cancer and healthy children: confirmatory factor analysis of the youth life orientation test and relations with health-related quality of life. , 2010, Journal of pediatric psychology.

[10]  A. Richardson,et al.  Experience of Fatigue in Adolescents Living With Cancer , 2006, Cancer Nursing.

[11]  J. Cappelleri,et al.  Patient-reported outcomes: conceptual issues. , 2007, Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research.

[12]  P. Hinds Adolescent-Focused Oncology Nursing Research , 2004 .

[13]  E. Buckner,et al.  Embracing changes: adaptation by adolescents with cancer. , 2008, Pediatric nursing.

[14]  P. Monahan,et al.  Social Support and Symptom Distress in Adolescents/Young Adults With Cancer , 2008, Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses.

[15]  M. Sexton,et al.  Unmet needs among adolescent cancer patients: A pilot study , 2007, Palliative and Supportive Care.

[16]  J. Mao,et al.  Psychological outcomes and health beliefs in adolescent and young adult survivors of childhood cancer and controls. , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[17]  R. Berard,et al.  Psychological vulnerability and resilience to emotional distress: A focus group study of adolescent cancer patients , 2001 .

[18]  D. Kelly,et al.  'Being in the same boat': ethnographic insights into an adolescent cancer unit. , 2004, International journal of nursing studies.

[19]  A. P. Williams,et al.  An examination of cancer patients' monthly 'out-of-pocket' costs in Ontario, Canada. , 2007, European journal of cancer care.

[20]  P. Babb,et al.  Classification and incidence of cancers in adolescents and young adults in England 1979–1997 , 2002, British Journal of Cancer.

[21]  D. Finfgeld,et al.  Metasynthesis: The State of the Art—So Far , 2003, Qualitative health research.

[22]  I. Lewis,et al.  Rates of inclusion of teenagers and young adults in England into National Cancer Research Network clinical trials: Report from the National Cancer Research Institute (NCRI) Teenage and Young Adult Clinical Studies Development Group , 2008, British Journal of Cancer.

[23]  A. Mitchell,et al.  The adolescent cancer experience: loss of control and benefit finding. , 2010, European journal of cancer care.

[24]  S. Siegel,et al.  Quality cancer care for adolescents and young adults: a position statement. , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[25]  G. Gustafsson,et al.  Treatment outcome in young adults and children >10 years of age with acute lymphoblastic leukemia in Sweden , 2006, Cancer.

[26]  M. Grey,et al.  Feasibility and Preliminary Outcomes From a Pilot Study of Coping Skills Training for Adolescent—Young Adult Survivors of Childhood Cancer and Their Parents , 2010, Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses.

[27]  M. Brodie,et al.  Quality of life and psychosocial development in adolescents with epilepsy: a qualitative investigation using focus group methods , 2004, Seizure.

[28]  L. von Essen,et al.  Distressing and positive experiences and important aspects of care for adolescents treated for cancer. Adolescent and nurse perceptions. , 2004, European journal of oncology nursing : the official journal of European Oncology Nursing Society.

[29]  A. Richardson,et al.  A phenomenologic study of fatigue in adolescents receiving treatment for cancer. , 2005, Oncology nursing forum.

[30]  A. Grinyer The biographical impact of teenage and adolescent cancer , 2007, Chronic illness.

[31]  M. Savedra,et al.  Adolescent cancer: coping with treatment-related pain. , 1988, Journal of pediatric nursing.

[32]  R. Viner Do Adolescent Inpatient Wards Make a Difference? Findings From a National Young Patient Survey , 2007, Pediatrics.

[33]  J. A. Smith,et al.  The problem of appraising qualitative research , 2004, Quality and Safety in Health Care.

[34]  D. Volker,et al.  The Meaning of Surviving Cancer for Latino Adolescents and Emerging Young Adults , 2010, Cancer nursing.

[35]  R. Barr,et al.  Adolescents, young adults, and cancer—the international challenge , 2011, Cancer.

[36]  B. Pollock Where adolescents and young adults with cancer receive their care: does it matter? , 2007, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[37]  R. Sanson-Fisher,et al.  Measuring the psychosocial health of adolescent and young adult (AYA) cancer survivors: a critical review , 2010, Health and quality of life outcomes.

[38]  M. Rice,et al.  Evidence-Based Practice in Psychiatric and Mental Health Nursing: Qualitative Meta-Synthesis , 2008, Journal of the American Psychiatric Nurses Association.

[39]  C. O’Hare,et al.  The 'Essence of care study' for teenagers and young adults with cancer: a national longitudinal study to assess the benefits of specialist care. Phase I: feasibility and scoping study , 2010 .

[40]  Kate C. McLean,et al.  Stories of the young and the old: personal continuity and narrative identity. , 2008, Developmental psychology.

[41]  R. Viner,et al.  Youth Matters: Evidence-based best practice for the care of young people in hospital , 1998 .

[42]  F. Roila,et al.  Quality of life as a primary end point in oncology. , 2001, Annals of Oncology.

[43]  R. Fleming Equity and Excellence: liberating the NHS , 2010 .

[44]  D. Lamping,et al.  Development of a conceptual framework of health-related quality of life in pressure ulcers: a patient-focused approach. , 2010, International journal of nursing studies.

[45]  I. Harder,et al.  Keeping Their World Together-Meanings and Actions Created Through Network-Focused Nursing in Teenager and Young Adult Cancer Care , 2009, Cancer nursing.

[46]  C. Vercherat,et al.  Deregulation of genetic pathways in neuroendocrine tumors. , 2001, Annals of oncology : official journal of the European Society for Medical Oncology.

[47]  Faith Gibson,et al.  The experience of living with a chronic illness during adolescence: a critical review of the literature. , 2008, Journal of clinical nursing.

[48]  J. Arnett Emerging adulthood. A theory of development from the late teens through the twenties. , 2000, The American psychologist.

[49]  Catherine Pope,et al.  Patients' help-seeking experiences and delay in cancer presentation: a qualitative synthesis , 2005, The Lancet.

[50]  J. Nurmi,et al.  Understanding emerging adulthood from a goal-setting perspective. , 2010, New directions for child and adolescent development.

[51]  K. Neville The Relationships Among Uncertainty, Social Support, and Psychological Distress in Adolescents Recently Diagnosed With Cancer , 1998, Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses.

[52]  D. Kelly,et al.  Cancer care for adolescents and young adults. , 2008 .

[53]  M. Puhan,et al.  Validity of instruments to measure physical activity may be questionable due to a lack of conceptual frameworks: a systematic review , 2011, Health and quality of life outcomes.

[54]  D. Cella,et al.  Patient-reported outcome instrument selection: designing a measurement strategy. , 2007, Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research.

[55]  Published versus unpublished dissertations in psycho‐oncology intervention research , 2010, Psycho-oncology.

[56]  F. Gibson,et al.  The Stories of Young People Living With a Liver Transplant , 2010, Qualitative health research.

[57]  E. Tacconelli Systematic reviews: CRD's guidance for undertaking reviews in health care , 2010 .

[58]  J. Whelan,et al.  Cancer in adolescence: Incidence and policy issues. , 2008 .

[59]  H. Kyngäs,et al.  Coping with the onset of cancer: coping strategies and resources of young people with cancer. , 2001, European journal of cancer care.

[60]  D. Kelly,et al.  A qualitative evaluation of an adolescent cancer unit. , 2004, European journal of cancer care.

[61]  W. Riley,et al.  Enhancing measurement in health outcomes research supported by Agencies within the US Department of Health and Human Services , 2007, Quality of Life Research.

[62]  R. Hough,et al.  Transition: the cancer perspective. , 2010, British journal of hospital medicine.

[63]  D. Harcourt,et al.  Managing appearance changes resulting from cancer treatment: resilience in adolescent females , 2007, Psycho-oncology.

[64]  K. Morin,et al.  Evaluating the level of evidence of qualitative research. , 2002, Journal of obstetric, gynecologic, and neonatal nursing : JOGNN.

[65]  David Evans,et al.  Database searches for qualitative research. , 2002, Journal of the Medical Library Association : JMLA.

[66]  L. O'mara,et al.  Talking With Others Who “Just Know”: Perceptions of Adolescents With Cancer Who Participate in a Teen Group , 2008, Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses.

[67]  M. Dixon-Woods,et al.  Including qualitative research in systematic reviews: opportunities and problems. , 2001, Journal of evaluation in clinical practice.

[68]  B. Goodenough,et al.  Hidden Financial Costs in Treatment for Childhood Cancer: An Australian study of Lifestyle Implications for Families Absorbing Out-of-Pocket Expenses , 2003, Journal of pediatric hematology/oncology.