Journal of pain and symptom management
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J Pain Symptom Manage · Sep 2023
ReviewAre we on the same page? Exploring pediatric patients' involvement with advance care planning.
According to the UN Convention on the Rights of the Child, children have a right to be heard. This also applies to patients in pediatric palliative care (PPC). The aim of this literature review was to explore what is known about the involvement of children (<14 years of age), adolescents and young adults (AYAs) in advance care planning (ACP) in PPC. ⋯ A total of n = 471 unique reports were identified. Final inclusion criteria were met by n = 21 reports, including children and AYAs with diagnoses related to oncology, neurology, HIV/AIDS and cystic fibrosis. Nine reports were from randomized controlled studies, investigating ACP methodology. The main findings were: 1) caregivers are included more often than children and adolescents in ACP, 2) some studies indicate an incongruence between AYAs and their caregivers regarding ACP and treatment preferences, 3) although the process evokes a wide range of emotions, ACP is perceived as helpful by many AYAs CONCLUSION: The majority of studies about ACP in PPC do not include children and AYAs. Whether incongruence reported in some studies between AYAs and their caregivers regarding treatment preferences could be reduced by ACP should be further explored, including the involvement of children and adolescents in ACP, and the impact of pediatric ACP on patient outcomes in PPC.
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J Pain Symptom Manage · Sep 2023
Randomized Controlled TrialPatient-Reported Outcome Benefits for Children with Advanced Cancer and Parents: A Qualitative Study.
Electronic patient-reported outcomes (e-PROs) in pediatric oncology may be useful to track patients' symptoms and quality of life (QoL). However, implementation in the clinical setting is limited and few studies have examined child and parent perspectives on e-PRO usage. ⋯ Advanced pediatric cancer patients and their parents found benefit in completing routine e-PROs as they promoted greater reflection and awareness and increased communication. These results may inform further integration of e-PROs in routine pediatric oncology care.
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J Pain Symptom Manage · Sep 2023
A Systematic Approach to Assessing and Addressing Palliative Care Needs in an Outpatient Population.
A critical frontier for palliative medicine is to develop systems to routinely and equitably address the palliative care (PC) needs of seriously ill populations. ⋯ Through an innovative program, patients with serious illness were identified from a primary care population, assessed for PC needs, and offered specific services to meet those needs. While some patients were appropriate for specialty PC, even more needs were addressed without specialty PC. The program resulted in increased ACP and preserved quality of life.
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J Pain Symptom Manage · Sep 2023
HOPE: A Pilot Study of Psilocybin Enhanced Group Psychotherapy in Patients with Cancer.
Psilocybin-assisted psychotherapy shows promise in treating depression and existential distress in people with serious medical illness. However, its individual-based methodology poses challenges for scaling and resource availability. The HOPE trial (A Pilot Study of Psilocybin Enhanced Group Psychotherapy in Patients with Cancer) is an Institutional Review Boards-approved open-label feasibility and safety pilot study examining psilocybin-assisted group therapy in cancer patients with a DSM-5 depressive disorder (including major depressive disorder as well as adjustment disorder with depressed mood). We report here the safety and clinical outcome measures including six-months follow up data. ⋯ This pilot study demonstrated the safety, feasibility, and possible efficacy of psilocybin-assisted group therapy for cancer patients dealing with depressive symptoms. Based on demonstrated efficacy and significant reductions in therapist time, future investigations with the group therapy model are warranted.
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J Pain Symptom Manage · Sep 2023
Retrospective Review of Follow-up Strategies for Patients Receiving Palliative Radiotherapy.
There is no current standard-of-care follow-up strategy for patients who receive palliative radiotherapy (PRT) for bone metastases. Within our institution there is currently a heterogenous practice in which some providers schedule routine follow up 1-3 months after initial PRT while others do follow up only as needed (PRN). ⋯ Having a planned follow-up appointment after the initial course of PRT improves identification of patients who would benefit from additional treatment, thus improving patient experience and quality of care.