The present study examines the concept of illness identity, the degree to which a chronic illness is integrated into one's identity, in adults with a chronic illness by validating a new self-report questionnaire, the Illness Identity Questionnaire (IIQ). Self-report questionnaires on illness identity, psychological, and physical functioning were assessed in two samples: adults with congenital heart disease (22-78 year old; n = 276) and with multisystem connective tissue disorders (systemic lupus erythematosus or systemic sclerosis; 17-81 year old; n = 241). The IIQ could differentiate four illness identity states (i.e., engulfment, rejection, acceptance, and enrichment) in both samples, based on exploratory and confirmatory factor analysis. All four subscales proved to be reliable. Rejection and engulfment were related to maladaptive psychological and physical functioning, whereas acceptance and enrichment were related to adaptive psychological and physical functioning. The present findings underscore the importance of the concept of illness identity. The IIQ, a self-report questionnaire, is introduced to measure four different illness identity states in adults with a chronic illness.

Education on the importance of families and active family involvement in patient care seems to be necessary in basic, undergraduate education, but also in clinical practice. More research is necessary in order to explore the cultural and regional differences in the attitudes of nurses towards the involvement of families in patient care.

The proportion of patients in this study lost to follow-up was substantially lower than in other Western countries. Because only patient-related factors were examined with respect to loss to follow-up, further examination of patient-related, hospital-related, and healthcare-related determinants of lack of follow-up is needed.

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This study found that adolescents with CHD have a good QOL, one that is better than that of control subjects from the general population. A stronger SOC and better perceived physical health are potential resources for better QOL in patients.

Evidence was obtained for reciprocal pathways between SOC and the domains of perceived health, although the predominant direction of effects was found to be from SOC to perceived health. Hence, improving SOC has the potential to enhance future perceived health of adolescents with CHD.

Caring for adolescents with congenital heart disease requires attention to physical health but also to psychosocial functioning. Identifying how such psychosocial variables influence one another over time is important for designing health care strategies. The present study examined how depressive symptoms, loneliness, paternal and maternal support, and quality of life predicted one another. A total of 429 mid- to late adolescents with congenital heart disease (53.4 % boys) participated in a three-wave longitudinal study. Cross-lagged analyses indicated that depressive symptoms and loneliness mutually reinforced one another over time and led to relative decreases in quality of life. Paternal- and not so much maternal-support predicted relative decreases in depressive symptoms and loneliness and relative increases in quality of life. Maternal and paternal support, in turn, were negatively predicted by previous levels of adolescent depressive symptoms. In sum, important temporal sequences were uncovered potentially providing information for prevention and intervention targeting psychosocial functioning in adolescents with congenital heart disease.

CONTEXT: Breaks in the delivery of health care (ie, [health]care gaps) occur in a large proportion of young people transitioning to adulthood. Developing interventions that prevent adolescents from dropping out of the medical system, as they leave pediatric care, requires an understanding of determinants of care gaps. OBJECTIVE:To ascertain determinants of care gaps in young people with chronic conditions as they transition to adulthood by performing a systematic literature search.DATA SOURCES: MEDLINE, CINAHL, and Embase were queried for pertinent peer-reviewed publications.STUDY SELECTION: Primary quantitative or mixed methods studies that aimed to identify determinants of care gaps in young people (aged 10-25 years) diagnosed with complex chronic conditions and written in English, French, or Dutch were selected. Ten publications satisfied these criteria. DATA EXTRACTION:For each publication, determinants of care gaps and quantitative results were extracted. Determinants were categorized into 4 groups using thematic analysis. Quantitative results were standardized, and raw data were converted into odds ratios. RESULTS:Overall, 11 risk factors and 9 protective factors for care gaps were identified. All factors were related to patient characteristics. Demographics, disease-related characteristics, health care services use, and patient health behaviors and beliefs were significant determinants of care gaps in adolescents with chronic conditions. LIMITATIONS: Large variability in study methods, statistical techniques, and study populations resulted in inconsistent study findings. CONCLUSIONS:This systematic review identified patient-related determinants of care gaps. Unfortunately, the internal and external validity of the study findings are limited, warranting future prospective, multilevel studies that address remaining knowledge gaps.