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1.
J Affect Disord ; 361: 67-73, 2024 May 27.
Article in English | MEDLINE | ID: mdl-38810786

ABSTRACT

As is now well-known, COVID-19 is a highly contagious disease, which for some can cause symptoms that last long after initial infection. In 2021, a clinical set of symptoms referred to as long-COVID was identified. For many patients, long-COVID is a confusing and frightening multisystem disease, with the potential for myriad negative psychosocial effects, including significant impacts on employment and mental health, and requiring ongoing care. Research and treatment of long-COVID will be facilitated by a sound measure that addresses aspects of well-being, symptom experiences, and psychosocial impacts among long-COVID patients. The present work addresses this need by presenting the results of the development and preliminary psychometrics for the Long-COVID Well-Being Scale (LCOVID-WBS). In an exploratory factor analysis with a panel of 236 participants, researchers identified four factors: Emotional Strain, Physical Ability Strain, Control of Life, and Overall Evaluation of Health. The nascent measure represents the first step to measuring the impacts of long-COVID.

2.
J Pediatr Hematol Oncol ; 45(6): e764-e767, 2023 08 01.
Article in English | MEDLINE | ID: mdl-37494613

ABSTRACT

BACKGROUND: Therapy options for relapsed/refractory acute myelogenous leukemia (AML) are limited. Palliative chemotherapy options have been explored in adult patients, but little evidence exists in children. OBJECTIVES: Describe the clinical course of 2 pediatric patients with refractory AML who transitioned to outpatient palliative chemotherapy with good disease control and quality of life on these regimens. PATIENTS AND METHODS: Patient 1 was a 2-year-old girl who received a total of 4 cycles of standard chemotherapy with multiple complications and 15% to 20% blasts on marrow subsequent evaluation. An outpatient regimen of decitabine and vorinostat was consequently chosen for her. Patient 2 was a 16-year-old boy with residual disease after induction 1 with arm A with cytarabine, daunorubicin, and etoposide. His induction 2 course was complicated by multiorgan failure secondary to multiple infections including Klebsiella pneumonia and radiographically identified pulmonary fungal disease. On recovery, the marrow showed no disease but after the toxicities of initial therapy, the patient pursued a palliative regimen with azacitidine and lenalidomide. RESULTS: Patient 1 tolerated her regimen for 14 months, requiring weekly blood products and only one hospitalization for a central-line infection. Her blast count then increased precipitously, the disease progressed, and she died comfortably while receiving hospital-based end-of-life care. Patient 2 tolerated 14 months of his regimen. On a surveillance marrow sample, he was found to have 0.02% minimal residual disease. He then elected to pursue marrow transplantation. He maintained remission until his 6-month posttransplant surveillance bone marrow biopsy, which revealed 0.04% minimal residual disease. CONCLUSION: We describe 2 pediatric patients with relapsed/refractory AML who achieved disease control and acceptable quality of life utilizing outpatient palliative chemotherapy for over 12 months. These regimens should be considered in patients who no longer desire cytotoxic chemotherapy or are ineligible for further aggressive approaches.


Subject(s)
Leukemia, Myeloid, Acute , Outpatients , Male , Adult , Female , Humans , Child , Child, Preschool , Adolescent , Neoplasm, Residual/drug therapy , Quality of Life , Leukemia, Myeloid, Acute/drug therapy , Cytarabine/therapeutic use , Acute Disease , Antineoplastic Combined Chemotherapy Protocols/therapeutic use
4.
Psychooncology ; 26(1): 67-73, 2017 01.
Article in English | MEDLINE | ID: mdl-26489363

ABSTRACT

OBJECTIVE: We examined the roles of oncology providers in advance care planning (ACP) delivery in the context of a multidisciplinary cancer program. METHODS: Semi-structured interviews were conducted with 200 women with recurrent and/or metastatic breast or gynecologic cancer. Participants were asked to name providers they deemed important in their cancer care and whether they had discussed and/or completed ACP documentation. Evidence of ACP documentation was obtained from chart reviews. RESULTS: Fifty percent of participants self-reported completing an advance directive (AD) and 48.5% had named a healthcare power of attorney (HPA), 38.5% had completed both, and 39.0% had completed neither document. Among women who self-reported completion of the documents, only 24.0% and 14.4% of women respectively had documentation of an AD and HPA in their chart. Completion of an AD was associated with number (adjusted odds ratio [AOR] = 1.49) and percentage (AOR = 6.58) of providers with whom the participant had a conversation about end-of-life decisions. Participants who named a social worker or nurse practitioner were more likely to report having completed an AD. Participants who named at least one provider in common (e.g., named the same oncologist) were more likely to have comparable behaviors related to naming a HPA (AOR = 1.13, p = 0.011) and completion of an AD (AOR = 1.06, p = 0.114). CONCLUSIONS: Despite the important role of physicians in facilitating ACP discussions, involvement of other staff was associated with a greater likelihood of completion of ACP documentation. Patients may benefit from opportunities to discuss ACP with multiple members of their cancer care team. Copyright © 2015 John Wiley & Sons, Ltd.


Subject(s)
Advance Care Planning , Attitude to Health , Breast Neoplasms/psychology , Interdisciplinary Communication , Professional-Family Relations , Adult , Advance Directives , Aged , Breast Neoplasms/therapy , Family Relations , Female , Humans , Middle Aged , Odds Ratio
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