Barriers and needs in paediatric palliative home care in Germany: a qualitative interview study with professional experts

<p>Abstract</p> <p>Background</p> <p>In North-Rhine Westphalia (Germany) a pilot project for an extensive service provision of palliative care for children and adolescents has been implemented. Accompanying research was undertaken with the aim to assess the status quo of service delivery at the outset of the project and to evaluate the effects of the pilot project. As part of the research, barriers and needs with respect to paediatric palliative home care in the target region were explored.</p> <p>Methods</p> <p>Semi-structured interviews with 24 experts in the field of paediatrics, palliative and hospice care have been conducted and were analysed by qualitative content analysis.</p> <p>Results</p> <p>Four main categories emerged from the interviews: (1) specific challenges and demands in palliative care for children and adolescents, (2) lack of clear legal and financial regulations, (3) gaps in the existing care delivery, and (4) access to services. Generally the interviews reflected the observation that the whole field is currently expanding and that certain deficits are temporary barriers that will be resolvable in the medium-term perspective.</p> <p>Conclusions</p> <p>Predominant barriers were seen in the lack of clear legal and financial regulations which take into account the specific challenges of palliative care in children and adolescents, as well as in a shortcoming of specialist services for a local based care provision throughout the federal country.</p

Management of breakthrough pain in children with cancer

Stefan J Friedrichsdorf,1,2 Andrea Postier1 1Department of Pain Medicine, Palliative Care and Integrative Medicine, Children&#39;s Hospitals and Clinics of Minnesota, 2University of Minnesota Medical School, Minneapolis, MN, USA Abstract: Breakthrough pain in children with cancer is an exacerbation of severe pain that occurs over a background of otherwise controlled pain. There are no randomized controlled trials in the management of breakthrough pain in children with cancer, and limited data and considerable experience indicate that breakthrough pain in this pediatric patient group is common, underassessed, and undertreated. An ideal therapeutic agent would be rapid in onset, have a relatively short duration, and would be easy to administer. A less effective pharmacologic strategy would be increasing a patient&#39;s dose of scheduled opioids, because this may increase the risk of oversedation. The most common and effective strategy seems to be multimodal analgesia that includes an immediate-release opioid (eg, morphine, fentanyl, hydromorphone, or diamorphine) administered intravenously by a patient-controlled analgesia pump, ensuring an onset of analgesic action within minutes. Intranasal fentanyl (or hydromorphone) may be an alternative, but no pediatric data have been published yet for commercially available fentanyl transmucosal application systems (ie, sublingual tablets/spray, buccal lozenge/tablet/film, and nasal spray), and these products cannot yet be recommended for use with children with cancer and breakthrough pain. The aim of this paper was to emphasize the dearth of available information on treatment of breakthrough pain in pediatric cancer patients, to describe the treatment protocols we currently recommend based on clinical experience, and to suggest future research on this very important and under-researched topic. Keywords: pediatric, cancer, breakthrough pain, opioid, adjuvant analgesia, integrative medicin

Pain reporting and analgesia management in 270 children with a progressive neurologic, metabolic or chromosomally based condition with impairment of the central nervous system: cross-sectional, baseline results from an observational, longitudinal study

Stefan J Friedrichsdorf,1,2 Andrea C Postier,1 Gail S Andrews,3 Karen ES Hamre,4 Rose Steele,5 Harold Siden6,7 1Department of Pain Medicine, Palliative Care and Integrative Medicine, Children&rsquo;s Hospitals and Clinics of Minnesota, MN, USA; 2Department of Pediatrics, University of Minnesota Medical School, Minneapolis, MN, USA; 3Department of Pediatrics, University of British Columbia, Vancouver, BC, Canada; 4Department of Research and Sponsored Programs, Children&rsquo;s Hospitals and Clinics of Minnesota, Minneapolis, MN, USA; 5School of Nursing, Faculty of Health, York University, Toronto, ON, Canada; 6BC&nbsp;Children&rsquo;s Hospital Research Institute, Vancouver, BC, Canada; 7Canuck Place Children&rsquo;s Hospice, Vancouver, BC, Canada Abstract: Little is known about the prevalence, characterization and treatment of pain in children with progressive neurologic, metabolic or chromosomal conditions with impairment of the central nervous system. The primary aims of this study were to explore the differences between parental and clinical pain reporting in children with life-limiting conditions at the time of enrollment into an observational, longitudinal study and to determine if differences in pain experiences were associated with patient- or treatment-related factors. Pain was common, under-recognized and undertreated among the 270 children who enrolled into the &ldquo;Charting the Territory&rdquo; study. Children identified by their parents as experiencing pain (n=149, 55%) were older, had more comorbidities such as dyspnea/feeding difficulties, were less mobile with lower functional skills and used analgesic medications more often, compared to pain-free children. Forty-one percent of children with parent-reported pain (21.8% of all patients) experienced pain most of the time. The majority of clinicians (60%) did not document pain assessment or analgesic treatment in the medical records of patients who were experiencing pain. Documentation of pain in the medical record was positively correlated with children receiving palliative care services and being prescribed analgesics, such as acetaminophen, nonsteroidal anti-inflammatory drugs and opioids, as well as the adjuvant analgesics gabapentin and amitriptyline. Keywords: pediatric palliative care, hospice, neuropathic pain, palliative, life-limitin