Publications

Recent research on families with a child with a disability pays much attention to family quality of life (FQOL) and the family-centered approach (FCA). Although plenty of research has been conducted on their theorizing, conceptualization, and measurement, several questions regarding both concepts remain unanswered. In addition, several questions regarding their realization are still unresolved. Moreover, although they are often conceptually ...

Patients and methods: The European Organisation for Research and Treatment of Cancer QoL Questionnaire-Core 30 (QLQ-C30) and QLQ-Head and Neck 35 (QLQ-H&N35) module were used to assess QoL. Results: Of 442 patients randomly assigned, 291 (QLQ-C30) and 289 (QLQ-H&N35) patients completed at least one evaluable questionnaire. For QLQ-C30, cycle 3 and month 6 mean scores for platinum-fluorouracil plus cetuximab were not significantly worse ...

Background The concept of family quality of life is becoming increasingly important in family support programmes. This concept describes the quality of life of all family members and the family system as a whole, but only the opinion of the parents has been included. The opinion of the siblings has been incorporated in the opinions of the parents, although research has shown that there is discordance between parents' and siblings' reports. The ...

Quality of Life (QoL) has become an important indicator of health care needs and treatment outcomes. Yet studies on this topic among detained girls are still very scarce. This study aimed to fill this void by examining a theory of individual QoL, focussing on determinants of detained girls’ QoL over time. A four-wave follow-up study was conducted among 147 detained girls (Mage = 16.20). Participants rated their self-perceived QoL (i.e., physical ...

Objectives: To investigate to what extent middle ear problems and associated hearing loss affect quality of life (QoL) of children born with a cleft palate. Methods: Fifty-five children aged between 6 and 18 years, born with non-syndromic cleft palate +/- cleft lip (CP/L) were included. A new health-related quality of life (HRQOL) questionnaire was generated with consideration of the following domains of QoL: communication, hearing loss, ...

In drug treatment outcome literature, a focus on objective and socially desirable indicators of change (e.g. no drug use) has predominated, while outcome indicators that are important for drug users themselves (e.g. quality of life, satisfaction with treatment) have largely been neglected. Nonetheless, Quality of Life (QoL) has become an important concept to evaluate effectiveness of treatment in mental health care research and disability ...

The QOLIBRI (Quality of Life after Brain Injury) is a novel health-related quality-of-life (HRQoL) instrument specifically developed for traumatic brain injury (TBI). It provides a profile of HRQoL in six domains together with an overall score. Scale validity and factors associated with HRQoL were investigated in a multi-center international study. A total of 795 adults with brain injury were studied from 3 months to 15 years post-injury. The ...

BACKGROUND: Patient and public involvement for co-creation is increasingly recognized as a valuable strategy to develop healthcare research targeting patients' real needs. However, its practical implementation is not as advanced and unanimously accepted as it could be, due to cultural differences and complexities of managing healthcare programs and clinical studies, especially in the rare disease field. MAIN BODY: The European Neuromuscular ...

Hematopoietic cell transplantation (HCT) is a potentially curative treatment for children and adults with malignant and non-malignant diseases. Despite increasing survival rates, long-term morbidity following HCT is substantial. Neurocognitive dysfunction is a serious cause of morbidity, yet little is known about neurocognitive dysfunction following HCT. To address this gap, collaborative efforts of the Center for International Blood and Marrow ...

Background: There is an increasing interest in patient-reported outcome measurement to evaluate hernia operations. Several hernia-specific quality of life (QoL) scales have been proposed, but none are constructed for preoperative assessment. Methods: The European Registry for Abdominal Wall Hernias (EuraHS) proposed the short, 9-question EuraHS-QoL instrument for assessment pre- and postoperatively. The EuraHS-QoL was evaluated in a prospective, ...