Lung Transplant or Bust: Patients' Recommendations for Ideal Lung Transplant Education

Abstract

Peer reviewed eScholarship.orgPowered by the California Digital Library University of California A lthough current demand outpaces the supply, patients with end-stage lung disease who are able to get lung transplants can have up to a 75% lower risk of death and significantly better quality of life than patients who stay on the waiting list. [1][2][3] More than 100 transplant centers across the United States ensure that the approximately 1700 patients waiting for a lung transplant (based on Organ Procurement and Transplantation Network data as of November 2, 2012) know about and are prepared for a successful transplant. Federal regulations for solid-organ transplant dictate that patients must receive information about the evaluation, the surgery, postoperative treatment, alternative treatments, and medical and psychosocial risks. Main Outcome Measures-Patients' interest in receiving specific transplant information, the stage in the transplant process during which they wanted to receive the education, and the preferred format for presenting the information. Results-Patients most wanted information about how to sustain their transplant (72%), when to contact their coordinator immediately (56%), transplant benefits (56%), immunosuppressants (54%), and possible out-of-pocket expenses (52%). Patients also wanted comprehensive information early in the transplant process and a review of a subset of topics immediately before transplant (time between getting the call that a potential donor has been found and getting the transplant). Patients reported that they would use Internet resources (74%) and converse with transplant professionals (68%) and recipients (62%) most often. Discussion-Lung transplant patients are focused on learning how to get a transplant and ensuring its success afterwards. A comprehensive overview of the evaluation, surgery, and recovery process at evaluation onset with a review of content about medications, pain management, and transplant recovery repeated immediately before surgery is ideal.

Education Before Kidney Transplantation

“…As in other reports, the value of information repetition and having a support person to assist with retention was suggested. 12,15 Confusion regarding the waitlist testing and worry about remaining listed were also expressed. A recent systematic review and thematic synthesis on patient attitudes on the kidney transplant waitlist describes similar frustrations and identified the burden of tests as 1 of the 6 major themes in this population.…”

The 2018 ISHLT/APM/AST/ICCAC/STSW recommendations for the psychosocial evaluation of adult cardiothoracic transplant candidates and candidates for long-term mechanical circulatory support

“…• Patients report gaps in understanding the range of treatment options and associated risks and benefits, [164][165][166] as well as required self-care responsibilities after cardiothoracic transplantation/MCS implantation. 164,165,[167][168][169][170] • Understanding and decision-making about transplantation and/or MCS implantation can be driven more by attitudes and emotional factors (fears, expectations, and hopes) than by a systematic weighing of risks and benefits. 167,[171][172][173] • Patients may feel substantial decisional conflict (i.e., uncertainty about how to choose or what choice to make 174 ) when faced with transplantation, MCS, or other medical options.…”

“…Evidence. [164][165][166][167][168][169][170][171][172][173][174][175][176][177][178][179][180][181] When faced with possible cardiothoracic transplantation and/or MCS implantation, patients' knowledge of their options and responsibilities for self-care is often incomplete. Even with complete knowledge and understanding, attitudes and emotional factors can cloud decision-making about treatment options, and feelings of decisional conflict (i.e., uncertainty about how to choose between options) are common.…”

Experiences of supportive care when waiting for a lung re-transplantation

“…It has been shown that the majority of adult lung transplant patients are willing to use Internet resources. 26 Apart from immediate access to peer support, the healthcare organizations can offer secure meeting platforms with personal logins for patients and NoK. In addition to providing a platform for patients to learn more about the illness and receive support, healthcare professionals can use social media to collect data for studies and thus improve the care.…”