The Intersection of Palliative Care and Genetic Counseling in Cancer Care: A Case Discussion

Author(s):  
Andrea L. Buras ◽  
Meghan Barkhurst ◽  
Thomas J. Rutherford ◽  
Matthew L. Anderson ◽  
Diana P. English
2018 ◽  
pp. 1-9
Author(s):  
Chika R. Nwachukwu ◽  
Omobola Mudasiru ◽  
Lynn Million ◽  
Shruti Sheth ◽  
Hope Qamoos ◽  
...  

Purpose Despite recognition of both the growing cancer burden in low- and middle-income countries and the disproportionately high mortality rates in these settings, delivery of high-quality cancer care remains a challenge. The disparities in cancer care outcomes for many geographic regions result from barriers that are likely complex and understudied. This study describes the development and use of a streamlined needs assessment questionnaire (NAQ) to understand the barriers to providing quality cancer care, identifies areas for improvement, and formulates recommendations for implementation. Methods Using a comprehensive NAQ, in-depth interviews were conducted with 17 hospital staff involved in cancer care at two teaching hospitals in Nigeria. Data were analyzed using content analysis and organized into a framework with preset codes and emergent codes, where applicable. Results Data from the interviews were organized into six broad themes: staff, stuff, system, space, lack of palliative care, and provider bias, with key barriers within themes including: financial, infrastructural, lack of awareness, limited human capacity resources, lack of palliative care, and provider perspective on patient-related barriers to cancer care. Specific solutions based on ability to reasonably implement were subcategorized into short-, medium-, and long-term goals. Conclusion This study provides a framework for a streamlined initial needs assessment and a unique discussion on the barriers to high-quality oncology care that are prevalent in resource-constrained settings. We report the feasibility of collecting and organizing data using a streamlined NAQ and provide a thorough and in-depth understanding of the challenges in this setting. Knowledge gained from the assessments will inform steps to improve oncology cancer in these settings.


2019 ◽  
Author(s):  
Garden Lee ◽  
Han Sang Kim ◽  
Si Won Lee ◽  
Eun Hwa Kim ◽  
Bori Lee ◽  
...  

Abstract Background: Although early palliative care is associated with a better quality of life and improved outcomes in end-of-life cancer care, the criteria of palliative care referral are still elusive. Methods: We collected patient-reported symptoms using the Edmonton Symptom Assessment System (ESAS) at the baseline, first, and second follow-up visit. The ESAS evaluates ten symptoms: pain, fatigue, nausea, depression, anxiety, drowsiness, dyspnea, sleep disorder, appetite, and wellbeing. A total of 71 patients were evaluable, with a median age of 65 years, male (62%), and the Eastern Cooperative Oncology Group (ECOG) performance status distribution of 1/2/3 (28%/39%/33%), respectively. Results: Twenty (28%) patients had moderate/severe symptom burden with the mean ESAS ≥5. Interestingly, most of the patients with moderate/severe symptom burdens (ESAS ≥5) had globally elevated symptom expression. While the mean ESAS score was maintained in patients with mild symptom burden (ESAS<5; 2.7 at the baseline; 3.4 at the first follow-up; 3.0 at the second follow-up; P =0.117), there was significant symptom improvement in patients with moderate/severe symptom burden (ESAS≥5; 6.5 at the baseline; 4.5 at the first follow-up; 3.6 at the second follow-up; P <0.001). Conclusions: Advanced cancer patients with ESAS ≥5 may benefit from outpatient palliative cancer care. Prescreening of patient-reported symptoms using ESAS can be useful for identifying unmet palliative care needs in advanced cancer patients.


2019 ◽  
Vol 69 (suppl 1) ◽  
pp. bjgp19X703505
Author(s):  
Joseph Clark ◽  
Elvis Amoakwa ◽  
John Blenkinsopp ◽  
Florence Reedy ◽  
Miriam Johnson

BackgroundResearch to identify the role of primary care in cancer care is important. However, trials in primary care are difficult.AimTo understand how patients, families, and primary care clinicians view their role in cancer care and identify opportunities for cancer primary care research.MethodQualitative study embedded within a feasibility cluster randomised controlled trial of a primary care based needs assessment intervention. The Supportive Cancer Needs Survey (SCNS) was the main outcome. In-depth interviews with patients/carers and focus groups with primary care staff explored views on cancer care and trial participation. Data were recorded, transcribed verbatim, and analysed thematically by three independent researchers.ResultsFifteen cancer patients and three carers were interviewed and four focus groups (n = 11) were conducted. Three themes were generated satisfaction with current care; key time-points for improved cancer care; and information and research. Satisfaction with current care among patients was high in spite of 72% reporting at least one moderate-high unmet need at baseline. Most patients undergoing cancer treatment were unsure when to access primary care. Patients and carers highly valued proactive contact from their practice following diagnosis though this was uncommon. Post-oncology discharge was a key time-point for information needs and support for patients. Patients were reluctant to consider palliative care in spite of palliative care needs. Some felt therapeutic benefit from completing study measures.ConclusionPatients are satisfied with cancer primary care despite unmet needs. Palliative care is poorly understood by many who may benefit. Research participation may benefit some patients.


2020 ◽  
pp. bmjspcare-2020-002641
Author(s):  
Pierre Antoine Monier ◽  
Jan Chrusciel ◽  
Fiona Ecarnot ◽  
Eduardo Bruera ◽  
Stephane Sanchez ◽  
...  

ObjectivesPrevious studies have found an association between aggressive cancer care and lower quality end of life. Despite international recommendations, late or very late referral to palliative care seems frequent. This study aimed to evaluate the association between the duration of involvement of a palliative care team (PCT), and aggressive cancer care, and to identify factors associated with aggressive cancer care.MethodsWe performed an observational retrospective study in a single academic teaching hospital. In total, 561 inpatients with solid tumours or haematological malignancies were included. Patients followed by a PCT for at least 1 month before death were classified in the palliative care group. Aggressive cancer care was defined as: hospitalisations and/or a new line of chemotherapy within the last month of life, location of death, the use of chemotherapy in the last 2 weeks and hospice admissions within the last 3 days of life.ResultsAmong the 561 patients, 241 (43%) were referred to the PCT; 89 (16%) were followed by the PCT for a month or more before death. In the last 2 weeks of life, 124 (22%) patients received chemotherapy, 110 (20%) died in an acute care unit. At least one criterion of aggressive cancer care was found in 395 patients overall (71%). Aggressive cancer care was significantly less frequent when the PCT referral occurred >1 month before death (p<0.0001).ConclusionMore studies are needed to understand reasons for late referrals despite international recommendations encouraging integrative palliative care.Ethics approvalThe study was approved by the Grenoble Teaching Hospital ethics committee, and by the CNIL (French national commission for data privacy; Commission Nationale de l’Informatique et des Libertés) under the number 1987785 v 0. Due to ethical and legal restrictions, data are only available on request.


2016 ◽  
Vol 11 (4) ◽  
pp. 254-264 ◽  
Author(s):  
Megumi Shimizu ◽  
Maho Aoyama ◽  
Tatsuya Morita ◽  
Satoru Tsuneto ◽  
Yasuo Shima ◽  
...  

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