Is ‘informed consent’ an ‘understood consent’ in hematopoietic cell transplantation?

D’Souza, Anita; Pasquini, Marcelo C.; Spellecy, Ryan

doi:10.1038/bmt.2014.207

Cited by 30 publications

(47 citation statements)

References 30 publications

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“…How can an HCT team help maximize their patient's ability to make an informed choice? In a thorough discussion, D'Souza et al 12 captured many pitfalls in the current HCT informed consent process and concluded that new avenues should be sought to help patients make an informed decision. They suggested opportunities for improvement including the use of interactive technology, consideration about what information is actually meaningful for the patient's decision and enhancement of the consent forms.…”

Section: Older Patients With Other Diseases: Decision Making In Nephrmentioning

confidence: 99%

“…12 They see the decision as either choosing life (transplant) or choosing death (no transplant). From diagnosis onward, health-care professionals may subtly or not so subtly give the message that the goal is the potentially curative option of transplant.…”

Section: Differences In Decision Considerations Between Younger and Omentioning

confidence: 99%

“…They also provided an example of a consent process that includes two physician visits before the consent visit, with the transplant coordinator available in between to help reinforce information. 12 There is little time between diagnosis and transplant; therefore, it has been suggested that an effective decision-making collaboration among patients, treating oncologists and transplant physicians starts immediately after diagnosis. 6 This collaboration may also include geriatricians and palliative care physicians.…”

Section: Older Patients With Other Diseases: Decision Making In Nephrmentioning

confidence: 99%

“…A large volume of information about HCT is available from various sources, and older adults may benefit from assistance to narrow down what is actually meaningful for their decision. 12,43 Patients rely on their team members to share in plain language the knowledge that bears on their treatment decision. This should include knowledge from the most recent literature that pertains to their individual medical/psychosocial situation, rather than following the only protocol that may result in a cure.…”

Section: Older Patients With Other Diseases: Decision Making In Nephrmentioning

confidence: 99%

“…This team approach to educating the patient has been suggested for cancer, surgical and dialysis patients as well as for a general patient education protocol. 45,[65][66][67] In addition, web-based programs, 12,45 Q&A groups, and other formats could be used to present the information. In partnership with three transplant centers, the National Marrow Donor Program/Be the Match is conducting a qualitative study to identify HCT-related information needs and learning preferences for older adult patients and their caregivers.…”

Section: Older Patients With Other Diseases: Decision Making In Nephrmentioning

confidence: 99%

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Process of allogeneic hematopoietic cell transplantation decision making for older adults

Randall

Keven

Atlı

et al. 2015

Bone Marrow Transplant

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Allogeneic hematopoietic cell transplantation (alloHCT) may be the only curative option for some older adults with hematologic malignancies, and its associated risks of significant morbidity and mortality warrant a clear, informed decision-making process. As older adults have not been transplanted routinely until recent years, younger people have been the prototypical group around whom the current process has developed. Yet, this process is applied to older adults who have different considerations than younger patients when making their transplant decision. Older adults do not have the open-ended lives of younger patients and are entitled to consider how to spend their remaining time. They also possess maturity and experience, and with proper knowledge, they can make informed choices rather than moving forward in the transplant process unaware. Notably, older patients face similar problems with the informed decision-making process in nephrology. Strategies such as providing education about alloHCT gradually and repeatedly during induction, presenting recent knowledge from the literature in plain language, and utilizing a team approach to patient education may help older adults make the best decision about transplant in light of their situation and values. Understanding when and how older adults decide on alloHCT is an important first step to further exploring this problem.

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Section: Older Patients With Other Diseases: Decision Making In Nephrmentioning

confidence: 99%

Section: Differences In Decision Considerations Between Younger and Omentioning

confidence: 99%

Section: Older Patients With Other Diseases: Decision Making In Nephrmentioning

confidence: 99%

Section: Older Patients With Other Diseases: Decision Making In Nephrmentioning

confidence: 99%

Section: Older Patients With Other Diseases: Decision Making In Nephrmentioning

confidence: 99%

See 3 more Smart Citations

Process of allogeneic hematopoietic cell transplantation decision making for older adults

Randall

Keven

Atlı

et al. 2015

Bone Marrow Transplant

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Consenting rather than choosing. A qualitative study on overseas patients' decision to undergo hematopoietic stem cell transplantation

Sarradon‐Eck,

Franchina,

Arnault

et al. 2024

Cancer Medicine

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ObjectiveReasons for patients' acceptance of the allogeneic hematopoietic stem cell transplantation (allo‐HSCT) proposed and how their decision may be affected by the long distances involved have not been sufficiently investigated so far. We therefore conducted a qualitative study to identify the factors involved in overseas patients' decision to accept allo‐HSCT.MethodsIn‐depth semi‐directive interviews were conducted with overseas allo‐grafted patients (n = 22), as well as one non‐consenting patient and their caregivers (n = 24). Interviews were analyzed taking an inductive thematic approach.ResultsRespondents stated that their decision to undergo the transplantation was constrained by their feeling of being in a therapeutic impasse, the need for a survival strategy, the need to survive for their family's sake, family and doctors' pressures, and the feeling of being managed. The following factors favoring patients' acceptance were the medical information received, their faith, having a family donor, peer testimonies, and positive representations of the transplantation. Factors against patients' acceptance were geographical distance from home to the transplant center, apprehension of protective isolation, fear of dying, and representations of the graft.ConclusionsThese factors, such as patient's personal values and representations, need to be weighed up in order to adapt the information exchanged accordingly. Efforts are required to relieve patients' social isolation and improve the means of providing family support.

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Prevalence of decisional regret among patients who underwent allogeneic hematopoietic stem cell transplantation and associations with quality of life and clinical outcomes

Cusatis

Tecca

D’Souza

et al. 2020

Cancer

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BACKGROUND: Allogeneic hematopoietic stem cell transplantation (alloHCT) is potentially curative but with known negative effects on quality of life. In the current study, the authors investigated whether patients expressed regret after undergoing HCT and the relationships between clinical outcomes and quality of life. METHODS: Center for International Blood and Marrow Transplant Research data from 184 adults who completed the Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT) before undergoing alloHCT and at day 100 were used. Additional time points were 6 months and 12 months. Regret was measured using a FACT-BMT item not included in scoring: "I regret having the bone marrow transplant." The authors evaluated FACT-BMT scores and regret using Student t-tests. Covariance pattern models were used to determine predictors of regret over time, including baseline characteristics and post-alloHCT outcomes (acute or chronic graft-versus-host-disease, disease recurrence). RESULTS: At 100 days, 6 months, and 12 months, approximately 6% to 8% of patients expressed regret; a total of 15% expressed regret at any time point. Regret was found to be associated with lower FACT-BMT scores at 6 months and 12 months (P < .001). Higher baseline FACT-BMT and social well-being scores were associated with a reduced risk of expressing regret. The risk of regretting transplantation was 17.5 percentage points (95% confidence interval, 5.5-29.7 percentage points) greater in patients who developed disease recurrence after HCT compared with patients who did not. CONCLUSIONS: Among patients who underwent alloHCT and lived to 100 days, the majority did not report regretting their transplantation. Regret was found to be related to disease recurrence. Social connectedness may serve as a protective factor against later regret. Future work should explore regret in other patient groups and use qualitative methods to inform best practices for reducing regret. Cancer 2020;126:2679-2686.

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Is ‘informed consent’ an ‘understood consent’ in hematopoietic cell transplantation?

Cited by 30 publications

References 30 publications

Process of allogeneic hematopoietic cell transplantation decision making for older adults

Process of allogeneic hematopoietic cell transplantation decision making for older adults

Consenting rather than choosing. A qualitative study on overseas patients' decision to undergo hematopoietic stem cell transplantation

Prevalence of decisional regret among patients who underwent allogeneic hematopoietic stem cell transplantation and associations with quality of life and clinical outcomes

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