scholarly journals Hear us! Accounts of people treated with injectables for drug-resistant TB

2021 ◽  
Vol 11 (3) ◽  
pp. 146-154
Author(s):  
A. Almeida ◽  
M. Adjuntsov ◽  
W. Bushura ◽  
E. Delgado ◽  
M. Drasher ◽  
...  
Keyword(s):  
Supportive Care ◽  
Cochlear Implants ◽  
Drug Resistant ◽  
Social Environments ◽  
Who Guidelines ◽  
Patient Centered ◽  
Safety And Efficacy ◽  
Tb Treatment ◽  
Centered Care ◽  
Information Treatment

BACKGROUND: WHO drug-resistant TB (DR-TB) treatment recommendations now emphasize all-oral regimens, recommending against certain injectable agents and deprioritizing others due to inferior safety and efficacy. Despite increasing focus on patient-centered care, we are not aware of systematic attempts to qualitatively document patients’ perspectives on injectable agents. This may inform implementation of WHO guidelines, emphasizing the importance of consultation with affected communities.METHODS: Testimonies were provided by TB survivors who experienced hearing loss from treatment with injectable agents. Testimonies were submitted in writing in response to minimal, standardized, open-ended prompts. Participants provided a signed consent form (with options to participate anonymously or as a named co-author), and later gave input into the overall shape and recommendations of the article.RESULTS: Fourteen TB survivors in 12 countries contributed testimonies. The following common themes emerged: lack of access to appropriate testing, information, treatment, or a collaborative treatment environment; the power of supportive care and social environments; stigma and isolation from TB treatment itself and resultant disability; and inaccessibility of cochlear implants.CONCLUSIONS: Survivor testimonies indicate strong preferences for avoidance of injectable agents, supporting rapid implementation of revised WHO guidelines, as well as for quality and supportive care for both TB and disabilities.

scholarly journals Introducing a Supportive Care Team for Advance Directive Education in a Neurological and Neurosurgical Patient Population

2020 ◽  
Vol 7 (6) ◽  
pp. 1286-1293
Author(s):  
Charlotte Henke ◽  
Emily Mroz ◽  
Ngoc Anh Le ◽  
Hannah M Gregory ◽  
Ashley Ghiaseddin ◽  
...  
Keyword(s):  
Supportive Care ◽  
Advance Care Planning ◽  
Advance Directive ◽  
Patient Population ◽  
Care Team ◽  
Patient Treatment ◽  
Care Planning ◽  
Patient Centered ◽  
Centered Care ◽  
Advance Care

Background: Patient-centered care includes delineation of patient treatment values (ie, advance care planning [ACP]). Advance care planning often includes advance directive (AD) completion and is underutilized, particularly among neurology and neurosurgery patients. Implementation of a supportive care team (SCT) in outpatient clinic settings may offer opportunities for AD education and completion. Objective: This study assesses the effectiveness of an integrative SCT composed of hospice volunteers and undergraduate quality improvement interns in their efforts to provide ACP education in neurological and neurosurgical outpatient clinics. Assessment includes a description of different types of SCT-patient encounters, as well as patient interest in and completion of ADs after interacting with the SCT. Results: Across the data collection period, 2770 encounters were initiated. The majority of encounters resulted in patient ACP education. Some patients completed ADs during their SCT encounter (3.45%) or after their SCT encounter (10.18%). Conclusion: The SCT effectively enhances ACP education in this patient population. The utilization of trained interns to assist with ACP is beneficial and practical in clinic workflow.

Social inequalities in supportive care needs and quality of patient-centered care of cancer patients in Mexico

2020 ◽  
Author(s):  
Svetlana V. Doubova ◽  
Ingrid Patricia Martinez-Vega ◽  
Claudia Infante-Castañeda ◽  
Carlos E. Aranda-Flores ◽  
Felicia M Knaul ◽  
...  
Keyword(s):  
Supportive Care ◽  
Cancer Patients ◽  
Social Inequalities ◽  
Patient Centered Care ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Patient Centered ◽  
Centered Care

scholarly journals Shared-care model for complex chronic haematological malignancies

2021 ◽  
Vol 31 (2) ◽  
pp. 165-174
Author(s):  
Verna Cheung ◽  
Nancy Siddiq ◽  
Rebecca Devlin ◽  
Caroline McNamara ◽  
Vikas Gupta
Keyword(s):  
Supportive Care ◽  
Myeloproliferative Neoplasms ◽  
Healthcare Providers ◽  
Shared Care ◽  
Care Model ◽  
Patient Centered ◽  
Shared Care Model ◽  
Centered Care ◽  
Complex Decision Making ◽  
Travel Burden

Myeloproliferative neoplasms (MPNs) are a group of rare Philadelphia-negative chronic leukemias. Disease rarity has resulted in limited expertise concentrated in specialist centres. Patients are often referred to such expert centres for diagnostic issues, complex decision-making, access to novel drugs through clinical trials, and supportive care. Attending such appointments may increase financial and travel burden, increase caregiver stress, and negatively impact quality of life. To address this, the MPN program at Princess Margaret (PM) Cancer Centre has implemented a shared-care model, working with local healthcare providers to provide ongoing management, and supportive care for MPN patients closer to home. This decreases patient travel burden, while maintaining high-quality patient-centered care. In this article we share our experience implementing the shared-care model. This model is potentially applicable to other chronic hematological malignancies and rare chronic diseases. The ultimate goal of shared-care is not to centralize care, but instead to build a community of accessible care for the patient.

scholarly journals Geriatric Oncology in the Instagram Era: PhotoVoice to Enable Patient-Centered Care and Shared Decision Making

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 26-26
Author(s):  
Irene Blackberry ◽  
Christopher Steer ◽  
Tshepo Rasekaba ◽  
Kim Young ◽  
Nicole Webb ◽  
...  
Keyword(s):  
Decision Making ◽  
Supportive Care ◽  
Shared Decision Making ◽  
Geriatric Assessment ◽  
Patient Centered Care ◽  
Assessment Process ◽  
Shared Decision ◽  
Patient Centered ◽  
Age Related ◽  
Centered Care

Abstract Evidence shows that multidimensional assessment of older adults with cancer yields more holistic care and results in better communication about age-related concerns; as well as enables personalised, patient-centered supportive care. Geriatric assessment (GA) captures clinical, physical and psychological factors, with limited opportunity to gather information about the patient’s environment, personal contexts and priorities. We trialed the feasibility and acceptability of geriatric assessment (GA)-guided enhanced supportive care (ESC) among 20 adults aged over 70 years in a regional cancer center. We then studied the impact of the integration of four patient-derived photographs (with PhotoVoice analysis) to this ESC on patient satisfaction with communication with the oncologist regarding age-related concerns and on facilitating empowerment, patient-centered care and shared decision making. The use of PhotoVoice analysis of patient-derived photographs is a novel strategy that can facilitate gathering patient-centered information during the assessment process.

scholarly journals Training social workers to enhance patient-centered care for drug-resistant TB-HIV in South Africa

2018 ◽  
Vol 8 (1) ◽  
pp. 25-27 ◽  
Author(s):  
J. R. Zelnick ◽  
B. Seepamore ◽  
A. Daftary ◽  
K. R. Amico ◽  
X. Bhengu ◽  
...  
Keyword(s):  
South Africa ◽  
Social Workers ◽  
Patient Centered Care ◽  
Drug Resistant ◽  
Patient Centered ◽  
Centered Care

The Role of Shared Decision-Making in Audiologic Rehabilitation

2014 ◽  
Vol 21 (1) ◽  
pp. 15-23 ◽  
Author(s):  
Helen Pryce ◽  
Amanda Hall
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Behavior Changes ◽  
Shared Decision ◽  
Patient Centered ◽  
Treatment Information ◽  
Centered Care ◽  
Potential Risks ◽  
Audiologic Rehabilitation

Shared decision-making (SDM), a component of patient-centered care, is the process in which the clinician and patient both participate in decision-making about treatment; information is shared between the parties and both agree with the decision. Shared decision-making is appropriate for health care conditions in which there is more than one evidence-based treatment or management option that have different benefits and risks. The patient's involvement ensures that the decisions regarding treatment are sensitive to the patient's values and preferences. Audiologic rehabilitation requires substantial behavior changes on the part of patients and includes benefits to their communication as well as compromises and potential risks. This article identifies the importance of shared decision-making in audiologic rehabilitation and the changes required to implement it effectively.

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