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Randomised, Double Blind, Controlled Trial of the Provision of Information about the Benefits of Organ Donation during a Family Donation Conversation

Philpot S. PLOS One June 20 106 doi:10.1371/journal.pone.0155778

Clinical Question

  • Do observers of simulated family conversations discussing organ donation  respond more favourably to the discussion if it contains extra information about the benefits of donation compared to a standard conversation?

Design

  • Quantitative Analytical Research
  • Randomised, double blind, controlled trial
  • Community members were asked to watch one of two videos of a simulated organ donation conversation that differed in the amount of information provided about the benefits of donation
  • Both videos showed the same doctor talking to Joanne, an actor playing the role of a family member of a brain dead patient. The verbal and non-verbal interactions between the ‘family member’ and the doctor were similar in each video.
  • Participants were unaware they had been allocated to watch one of two videos
  • A questionnaire was completed. A 5 point Likert scale was completed covering four domains:
    • Uptake of factual information by study participants
    • Level of discomfort and attitudes of study participants
    • Influence and persuasion of the doctor
    • Amount of information about organ donation provided by the doctor
  • With 252 participants per group, this study had an 80% power to detect a difference in score equal to 25% of 1 standard deviation with a 2-sided p-value of 0.05.

Setting

  • A request for participation was placed in the electronic newsletter of a large organization in Australia with 30000 employees. Participants were volunteers. No patients were involved in the study
  • Participants completed the survey in February 2015

Population

  • Inclusion: 628 people commenced the survey and entered baseline information about opinions and experiences of organ donation and transplant
  • 474 people completed the survey.
  • 239 participants watched the ‘Control’ video, 235 watched the ‘Supportive’ video

Intervention

  • The ‘supportive’ video contained information about the potential benefits of donation and transplant, the rarity of the opportunity for donation, and the need for organs for transplantation. In addition, information about the organ donation process was given in order to support informed decision making.

Control

Outcome

  • Primary outcome:
    • Uptake of factual information: Before watching the video there was no difference in the knowledge of the rarity of organ donation between the groups. After watching the videos those who watched the ‘supportive’ video were more aware that “not many people die in a way that allows them to be an organ donor”. This remained significant after adjustment of baseline variables
      • Adjusted OR 7.57, 95% CI 5.19-11.04, p < 0.001
    • Level of discomfort and general attitudes of study participants: There was no difference in how uncomfortable participants were in response to the 2 different styles of conversations.
    • Amount of information provided: there was no difference in perceptions that the information provided by the doctor was ‘enough for Joanne to make a decision’ or that ‘too much information was given’, however, participants who watched the control video were more likely to report that ‘more information about the benefits of donation should be given.’
      • Adjusted OR 0.35, 95% CI 0.25-0.50, p < 0.001
    • Influence and Persuasion by the Doctor: Participants viewing the ‘supportive’ video were more likely to report ‘the doctor was trying to convince the family to donate.’ (p <0.001). However, there was no difference in the perception that the doctor cared about the patient and the family (p = 0.21), that the doctor was helping the family come to the right decision (p = 0.43) OR that the doctor cared more about transplant recipients than the patient and the family (p = 0.10)

Authors’ Conclusions

  • The author concludes that a conversation about the rarity of the donation opportunity and the benefits to others of organ donation during family conversations were well received

Strengths

  • Prospective, randomized, blinded
  • Participants were volunteers but the baseline characteristics suggested they had diverse cultural and educational background. There was a range in ages and gender. The demographics were felt to reflect the demographics of the general community.
  • There was reasonable baseline balance between the participants watching the ‘supportive’ video and the ‘control’ video, although those watching the ‘supportive’ video were more likely to speak a language other than English at home and were slightly older

Weaknesses

  • The study did not use real patients or real family members. The response of a family member to a conversation may be completely different to an observer of a simulated conversation where there is no emotional connection. This brings into question the external validity of this trial.
  • The randomisation process is not described which makes it difficult to know if there were other external factors influencing the allocation between ‘supportive’ and ‘control’ groups.
  • Likert scales may be subject to distortion. Responders tend to pick central categories, be influenced by the wording of the question asked, and perhaps respond how they perceive they ‘should’ rather than an honest response. Randomisation, and having questions with positive and negative statements can obviate this problem.
  • It is hard to have a ‘one size fits all’ approach to family conversations, as different families have different needs. it is difficult to make a mold of the correct conversation.
  • 154 people who commenced the survey did not complete it. They were more likely female, of the ‘other religion’ group and more commonly knew someone who was an organ donor compared to those who completed the survey. It is not clear from the paper at what point these people withdrew from the survey. If this was after randomisation and after the videos began then it would be useful to know if these withdrawals were similar in the ‘supportive’ and ‘control’ groups
  • A selection bias cannot be ruled out here as 44% of those completing the survey reported that they were on the Australian Organ Donor Register (versus 23% for the general population at the time of the survey.)

The Bottom Line

  • Family conversations are a vital part of caring for the intensive care patient
  • The language used in end of life care including conversations about organ donation is an area that is poorly researched and understood.
  • This trial demonstrates that using ‘supportive’ language is well received suggesting that requestors can be advocates for organ donation, without being perceived as coercive and uncaring.
  • Although there are significant limitations to the methodology used in this trial, it is a very difficult area to study given the sensitivity of this subject in real patient/family situations. This trial reassures me that using ‘supportive’ language as a designated requestor is acceptable.

External Links

Metadata

Summary author: Celia Bradford
Summary date: August 24 2016
Peer-review editor: Duncan Chambler

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