Background

Discrepancy between self-reports and parent-proxy reports of adolescent health-related quality of life (HRQoL) has been repeatedly acknowledged in the literature as the proxy problem. However, little is known about the extent and direction of this discrepancy. The purpose of this study is to explore to what extent and in what direction HRQoL self-reports of adolescents with chronic conditions and those of their parents differ.

Methods

A cross-sectional survey was conducted among adolescents suffering from chronic conditions and their parents. Socio-demographic and disease-related characteristics were collected and information about consequences of the chronic condition was assessed. HRQoL was measured with KIDSCREEN-10 and DISABKIDS condition generic measure (DCGM-10). Agreement was analysed through defining a threshold of agreement based on half of the standard deviation of the HRQoL score with the highest variance. Agreement occurred if the difference between adolescent and parent scores was less than or equal to half of the standard deviation. Intra-class correlation coefficients and Bland-Altman plots were also computed. The characteristics associated with direction of disagreement were statistically tested with one-way ANOVA and Chi-square tests.

Results

584 paired HRQoL scores were obtained. Ratings from both adolescents and parents were high, compared to European norm data. Differences between adolescents and parents were statistically significant, yet relatively small. Disagreement existed in both directions: in 24.5% (KIDSCREEN-10) and 16.8% (DCGM-10) of the cases adolescents rated their HRQoL lower than did their parent, while in 32.2% (KIDSCREEN-10) and 31.7% (DCGM-10) of the cases the opposite was true. Adolescent's age, educational level and type of education, parent's educational level, number of hospital admissions and several other disease-related factors influenced direction of disagreement.

Conclusions

In a reasonable proportion of cases the adolescent and parent agreed on the adolescent's HRQoL (43-51% of the cases) and most disagreement tended to be minor. Thus, the proxy problem may be smaller than presented in the literature and its extent may differ per population. As adolescents are expected to become partners in their own health care, it is recommended to focus on adolescents' own perceptions of HRQoL.

Background:

As important users of health care, adolescents with chronic conditions deserve to be consulted about their experiences and expectations. This study aimed to explore chronically ill adolescents’ preferences regarding providers’ qualities, and outpatient and inpatient care. Furthermore, suggestions for improvement of service delivery were collected.

Methods:

This research was a sequential mixed methods study in adolescents aged 12–19 years with various chronic conditions treated in a university children’s hospital. Methods comprised 31 face-to-face interviews at home, a hospital-based peer research project in which nine adolescents interviewed 34 fellow patients, and a web-based questionnaire (n = 990). Emerging qualitative themes were transformed into questionnaire items.

Results:

Having “a feeling of trust” and “voice and choice” in the hospital were central to these adolescents. Regarding providers’ qualities, “being an expert” and “being trustworthy and honest” were ranked highest, followed by “being caring and understanding”, “listening and showing respect”, and “being focused on me”. Regarding outpatient consultations, preferences were ranked as follows: “answering all questions”; “attending to my and my parents’ needs”; and “clear communication”, while “limited waiting times” and “attractive outpatient surroundings” scored lowest. Regarding hospitalization, adolescents most preferred to “avoid pain and discomfort”, “keep in touch with home”, and “be entertained”, while “being hospitalized with peers” and “being heard” were least important. Regarding priorities for improvement, 52% of the respondents felt that more attention should be paid to older children, followed by enabling more contact with family and friends (45%), shorter waiting times (43%), and more activities to meet fellow patients (35%).

Conclusion:

Adolescents prefer technically competent providers, who are honest and trustworthy, and attend to their needs. As they gradually grow out of the pediatric environment, they desire staff attitudes to become less childish and more age-appropriate, and welcome being treated as an equal partner in care. Health care professionals should inquire into preferences and adjust their communication style accordingly.

Introduction

Despite growing numbers of adolescents with chronic conditions, transition from paediatric to adult care has received little attention in the Netherlands.

Aim

To identify gaps in transition to adult care of chronically ill adolescents from the perspectives of youth, parents and caregivers.

Methods

Semi-structured interviews with 24 adolescents (aged 15–22, with various chronic conditions), 24 parents and 17 healthcare professionals. Thematic analysis was performed using ATLAS.ti.

Results

Several themes were identified among adolescents and parents. Both viewed leaving paediatric care as a ‘logical step’, but noticed they were ‘unprepared and uninvolved’ in the process. Most parents found it ‘hard to leave familiar surroundings’, while adolescents' most common attitude was ‘wait and see’ reflecting a certain ease with the situation. However, both reported ‘feeling lost after transition’ due to cultural and procedural differences between paediatric and adult care. Adolescents are ‘struggling with responsibility’ in the adult environment, while parents find it hard ‘to let go in confidence’. One overarching theme, ‘gaining trust’, appeared from caregivers, adolescents, and parents.

Conclusion

Adolescents' preparation for adult care is deficient from patient, parent and caregiver perspectives. Transitional care should focus on adolescents' independency, parental involvement and bridging the gap between paediatric and adult caregivers.

Introduction

In the Netherlands, adolescents with chronic conditions are often ill prepared for their transition to adult care. Services are not geared toward adolescents' needs and preferences. To bridge these gaps, a four-year innovation programme, On Your Own Feet Ahead, was started in 2008.

Aim

To provide integrative health care services and appropriate transitional care to adolescents (12–25 years) with somatic chronic conditions. The programme focuses on the establishment of independent health behaviours, increasing of self-management skills and improving the organisation of transitional care.

Description

Using a breakthrough approach, ten multidisciplinary pilot teams from hospitals and rehabilitation centres in the Netherlands implemented and evaluated a number of interventions and policy changes to improve transitional care, including the use of a transition coordinator, clinical pathways and individual transition plans. In the next phase of implementation, best practices will be spread nation-wide.

Discussion

Despite considerable difficulties in finding local commitment and bridging cultural and organisational gaps, most teams succeed in establishing structural change and new partnerships. To facilitate changes, more commitment on national policy level seems required.

Conclusion

In the pilot phase, the action-oriented breakthrough approach facilitated structural improvements of transitional care. This is promising for further dissemination.

Purpose

Improve the quality of integrated care and support to oncology outpatients receiving palliative radiotherapy.

Theory/background

Oncology patients receiving palliative radiotherapy experience major transitions. These patients are currently offered shortened outpatient treatment. In 2004–2005, research by RU students showed deficiencies in information, continuity in care, and in communication between health care providers. To improve integrated care and transmural cooperation multidisciplinary teams contributed to developing a protocol and checklist called ‘Transmural Programme Palliative Radiotherapy’ (TZPR).

Method

The RU Centre of Expertise Transitions in Care evaluated the process of regional implementation and the value of TZPR on patient and organizational level. Themes were needs, logistic process, symptom control, psychosocial support and after-care. A mixed methods design was used: semi-structured interviews with 20 caregivers and patients; a focus group discussion with 7 caregivers; a questionnaire for both patients and control group.

Results/conclusion

Health professionals are positive about the content and implementation of TZPR. They experienced an improvement in the quality of integrated care and support to patients. Preliminary results from the patients' perspective are expected mid-2009. The participatory approach guarantees the desired integrated care.