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Every baby, child and adolescent will experience pain at times throughout their life. Despite its ubiquity, pain is a major challenge for individuals, families, healthcare professionals, and societies. Pain is often hidden and can go undiscussed or ignored. Undertreated, unrecognised, or poorly managed pain in childhood leads to important and long-lasting negative consequences that continue into adulthood. This undertreatment should not continue. We have the tools, expertise, and evidence to provide better treatment for childhood pain.In this Commission we present four transformative goals that will, if achieved, transform the lives of children with pain and their families. These goals, taken at face value, may seem simple and obvious. However, if the goals were easy to achieve there would be few, if any, young people reporting poorly managed acute pain, pain after surgery or procedures, or ongoing chronic pain. Pain is multifactorial, and influenced by biological, psychological and social factors, making it complex and difficult to treat effectively, especially in infants, children and adolescents. This Commission focusses on children from birth through to 24 years of age in developed countries.The first transformative goal is to 'make pain matter'. Here we argue that pain has not mattered enough, as evidenced by common failings in clinical practice, low levels of training and investment, and a lack of concern for issues of equity and equality. Despite some good examples of knowledge translation, we highlight that investment in a strong social science research base for paediatric pain will catapult us into a new era in which we can address the social and cultural context of pain.The second is to 'make pain understood' at a fundamental biological and psychological level. There has been excellent progress in mechanistic understandings of nociception and pain perception for both acute and chronic pain states but gaps in knowledge remain. Advances in developmental biology, in genetics, in psychology, and in nosology and classification will all help speed up the discovery in these areas. There is also a need for greater investment in larger international birth cohort studies that incorporate comprehensive pain-related measurement incorporated.The third is to 'make pain visible'. Pain can and should be assessed. We need to help improve understanding of optimal methods for pain assessment at throughout childhood and in all clinical scenarios. While subjective pain report is the primary and desirable method when this is possible, many of the methods and measures that are in common use can and should be improved. There has been development in understanding the biological correlates of pain, and in broader patient reported outcome variables that can expand our horizons. Finally, we should be more focussed on assessing outcomes that are important to patients, rather than those that are central to researchers and clinicians.The fourth is to 'make pain better' by advancing our knowledge of multiple treatment options in all a...

Increasing survival rates in childhood cancer have yielded a growing population of parents of childhood cancer survivors (CCSs). This systematic review compiles the literature on positive and negative long-term psychological late effects for parents of CCSs, reported at least five years after the child's diagnosis and/or two years after the end of the child's treatment. Systematic searches were made in the databases CINAHL, EMBASE, PsycINFO, and PubMed. Fifteen studies, published between 1988 and 2010, from 12 projects were included. Thirteen studies used quantitative methodology, one quantitative and qualitative methodology, and one qualitative methodology. A total of 1045 parents participated in the reviewed studies. Mean scores were within normal ranges for general psychological distress, coping, and family functioning. However, a substantial subgroup reported a clinical level of general psychological distress, and 21–44% reported a severe level of posttraumatic stress symptoms. Worry, disease-related thoughts and feelings, marital strains, as well as posttraumatic growth was reported. Several factors were associated with the long-term late effects, such as parents' maladaptive coping during earlier stages of the childs disease trajectory and children's current poor adjustment. Quality assessments of reviewed studies and clinical implications of findings are discussed and recommendations for future research are presented.

With the goal of studying perceived distress among adolescents recently diagnosed with cancer, 56 adolescents were interviewed by telephone 4 to 8 weeks after diagnosis. The interviews included a structured interview guide, the Hospital Anxiety and Depression Scale, and the subscales Mental Health and Vitality from SF-36. "Losing hair" and "missing leisure activities" were identified as the most prevalent aspects of distress, whereas "missing leisure activities" and "fatigue" were rated with the highest levels of distress. "Worry about not getting well," "mucositis," "nausea," "pain from procedures and treatments," and "worry about missing school" were rated as the overall worst aspects by most adolescents. Twelve percent reached the cutoff score for potential clinical anxiety and 21% for potential clinical depression. Ratings of Mental Health and Vitality were lower than norm values. Prevalence of pain from procedures/treatments was higher among those who scored in the clinical range of depression, and more adolescents who were treated at a local hospital scored in the clinical range of anxiety. The findings show that ratings of prevalence, levels, and aspects perceived as the worst are not necessarily in accordance, that adolescents scoring in the clinical range of psychological distress are in the minority, and that the adolescents experience reduced physical and mental well-being.

BackgroundA lack of longitudinal studies has hampered the understanding of the development of posttraumatic stress symptoms (PTSS) in parents of children diagnosed with cancer. This study examines level of PTSS and prevalence of posttraumatic stress disorder (PTSD) from shortly after diagnosis up to 5 years after end of treatment or child's death, in mothers and fathers.MethodsA design with seven assessments (T1–T7) was used. T1–T3 were administered during treatment and T4–T7 after end of treatment or child's death. Parents (N = 259 at T1; n = 169 at T7) completed the PTSD Checklist Civilian Version. Latent growth curve modeling was used to analyze the development of PTSS.ResultsA consistent decline in PTSS occurred during the first months after diagnosis; thereafter the decline abated, and from 3 months after end of treatment only minimal decline occurred. Five years after end of treatment, 19% of mothers and 8% of fathers of survivors reported partial PTSD. Among bereaved parents, corresponding figures were 20% for mothers and 35% for fathers, 5 years after the child's death.ConclusionsFrom 3 months after end of treatment the level of PTSS is stable. Mothers and bereaved parents are at particular risk for PTSD. The results are the first to describe the development of PTSS in parents of children diagnosed with cancer, illustrate that end of treatment is a period of vulnerability, and that a subgroup reports PTSD 5 years after end of treatment or child's death. © 2015 The Authors. Psycho‐Oncology published by John Wiley & Sons Ltd.