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1.
Qual Life Res ; 22(10): 2877-88, 2013 Dec.
Article in English | MEDLINE | ID: mdl-23605935

ABSTRACT

PURPOSE: Heart diseases are often associated with residual injuries, persisting functional restrictions, and long-term sequelae for psychosocial development. Currently, there are no disease-specific instruments to assess the health-related quality of life (HrQoL) of pre-school children. The aims of this study were to develop a parent proxy instrument to measure the HrQoL of children aged 3-7 years with a heart disease and to confirm its validity and reliability. METHODS: Items from the Preschool Pediatric Cardiac Quality of Life Inventory (P-PCQLI) were generated through focus groups of caregivers. In a pilot study, comprehensibility and feasibility were tested. Five subdimensions were defined theoretically. Psychometric properties were analysed within a multicentre study with 167 parental caregivers. RESULTS: The final 52-item instrument contains a total score covering five moderately inter-correlated dimensions. The total score of the questionnaire showed a very high internal consistency (Cronbachs' α = 0.95). Test-retest correlation was at r tt = 0.96. External validity was indicated by higher correlations (r = 0.24-0.68) with a generic paediatric quality of life questionnaire (KINDL) compared to the Strengths and Difficulties Questionnaire (r = 0.17 to 0.59). Low P-PCQLI total scores were significantly associated with inpatient as opposed to outpatient treatment (t = 6.04, p < .001), with at least moderate disease severity ((t = 5.05, p < .001) NYHA classification) and with poorer prognosis (t = 5.53, p < .001) as estimated by the physician. CONCLUSIONS: The P-PCQLI is reliable and valid for pre-school children with a heart disease. It could be used as a screening instrument in routine care, and for evaluation of HrQoL outcomes in clinical trials and intervention research.


Subject(s)
Health Status Indicators , Heart Diseases/psychology , Parents/psychology , Psychometrics/methods , Quality of Life/psychology , Surveys and Questionnaires/standards , Adult , Caregivers/psychology , Child , Child, Preschool , Chronic Disease/psychology , Feasibility Studies , Female , Heart Diseases/physiopathology , Humans , Hungary , Male , Pediatrics , Proxy , Psychometrics/instrumentation , Reproducibility of Results , Schools , Sickness Impact Profile
2.
Klin Padiatr ; 223(3): 152-8, 2011 May.
Article in English | MEDLINE | ID: mdl-21462102

ABSTRACT

BACKGROUND: Survivors of pediatric cancer are at increased risk for medical and psychosocial late effects. This study retrospectively investigated the utilization of oncological and psychosocial care by former adolescent cancer patients (≥ 5 years since cancer diagnosis) in Germany. PATIENTS: Based on data of the German Childhood Cancer Registry (N=1 876 survivors of cancer with an age at diagnosis between 15 and 18 years), the study cohort comprised 820 survivors of adolescent cancer (time since diagnosis: M=13.7, SD=6.0, age at follow-up: M=30.4, SD=6.0 years). METHOD: Survivors of adolescent cancer completed standardized questionnaires measuring symptoms of posttraumatic stress, depression and anxiety as well as items on their utilization of medical and psychosocial care. RESULTS: More than a quarter (26.2%) of the survivors was no longer attending regular oncological follow-up assessments. Less than half of the survivors (44.4%) had received psychosocial care, mostly during their in-patient cancer treatment and their post-acute rehabilitation phase. Out of 184 survivors showing clinically relevant symptoms of posttraumatic stress, anxiety and/or depression at time of the study, 12.0% received psychosocial care and 13.6% took psychotropic medication. CONCLUSION: It should be studied further why only a small proportion of the survivors showing clinically relevant symptoms received psychosocial or psychopharmacological treatment. Systematic oncological follow-up assessments should take psychological late effects into greater account.


Subject(s)
Aftercare/statistics & numerical data , Anxiety Disorders/rehabilitation , Community Mental Health Services/statistics & numerical data , Depressive Disorder/epidemiology , Depressive Disorder/rehabilitation , Neoplasms/psychology , Neoplasms/rehabilitation , Stress Disorders, Post-Traumatic/rehabilitation , Survivors/psychology , Survivors/statistics & numerical data , Adolescent , Adult , Anxiety Disorders/diagnosis , Anxiety Disorders/epidemiology , Anxiety Disorders/psychology , Attitude to Death , Depressive Disorder/diagnosis , Depressive Disorder/psychology , Drug Utilization/statistics & numerical data , Female , Germany , Hospitalization/statistics & numerical data , Humans , Longitudinal Studies , Male , Personality Assessment , Psychotropic Drugs/therapeutic use , Registries/statistics & numerical data , Rehabilitation Centers/statistics & numerical data , Stress Disorders, Post-Traumatic/diagnosis , Stress Disorders, Post-Traumatic/epidemiology , Stress Disorders, Post-Traumatic/psychology , Utilization Review/statistics & numerical data , Young Adult
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