Objective: This study aimed to identify problems as experienced by adults with a mitochondrial disease. We chose to describe these problems from the patients' perspective as we thought this would give optimal input for care improvement.Design: A qualitative design using the grounded theory approach, involving single individual open interviews with 16 adults with a mitochondrial disease.

Summary Objective: Firstly, this paper aims to systematically review the mitochondrial disease literature to identify studies assessing the needs and problems in the daily life of children with a mitochondrial disease and of their parents and family. The second aim is to provide more insight into the need for information by the parents of these children during the diagnostic process while in hospital. Design: A systematic review and a pilot study, using a qualitative (focus group interviews; n=7) and a quantitative (questionnaire; n=37) design. Results: Mothers reported great socioeconomic and psychoaffective strain and showed psychopathological symptoms in the two studies published with respect to this topic. The pilot study showed that parents considered an honest and interested attitude of the person who is giving the information as most important. Furthermore they wanted oral and written information and a central point where they could go with their questions at any time they felt the need. The need for information increased during the four phases of the diagnostic process and was highest in the fourth phase. Conclusions: The few studies found in the review, combined with expectations that having a mitochondrial disease must have a great impact on these children and their parents and family, call for more research in their needs and problems. Furthermore, there are gaps in the current information provision to parents of these children. A better understanding of the needs and problems of these children and their family is essential for effective care planning and might result in an improved quality of life.

about illness than mothers did (U=2416.000, p=0,035). Adequacy of care, adequate pain management, parents' involvement in care, trusting relationship and staff attitudes were the most important determinants of parental satisfaction. Conclusions: Parental satisfaction can be used as an indicator of the quality of care experienced by parents and patients. Interventions in pediatric care should include measurements of parental and child satisfaction, along with quality of care during treatment's outcomes assessment since hospitals are obliged by the state and private sector to document quality improvement measures.