1Rheumatology, Kings Mill Hospital, Mansfield Road, Sutton-in-Ashfield, Nottinghamshire, NG17 4JL and 2Academic Rheumatology, University of Nottingham Clinical Sciences Building, City Hospital, Hucknall Road, Nottingham, NG5 1PB, UK.
Correspondence to:
D. A. Walsh, Academic Rheumatology, University of Nottingham Clinical Sciences Building, City Hospital, Hucknall Road, Nottingham, NG5 1PB, UK. E-mail: david.walsh{at}nottingham.ac.uk
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Abstract |
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Methods. Next of kin were approached by bereavement officers then informed about the project by the study nurse. Written consent was sought to collect bone, cartilage and soft tissue from both knees, and to extract data from medical notes.
Results. During the 4-month study period 259 families attended the Kings Mill Hospital Bereavement Centre, 36 of whom met with the study nurse, 10 of whom consented to joint tissue collecting. The process of seeking consent required approximately 1 h of direct contact. Participants often looked to this as an extension of the bereavement counselling process and many expressed gratitude that some good might be derived from the death. Reasons for non-recruitment included operational restraints and relatives distress. Donors were more likely to be male (90%) than were non-donors (49%, Z = 2.6, P < 0.01). Coroners post-mortem examinations took place on similar proportions of donors (20%) and non-donors (19%, Z = 0.06, P = 0.96).
Conclusions. Post-mortem joint tissue collection for research remains feasible in the presence of a skilled, well co-ordinated, multidisciplinary team, even when post-mortem examination would not otherwise be required.
KEY WORDS: Post-mortem, Tissue, Ethics, Arthritis, Consent.
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Introduction |
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Consent for research on tissues samples collected after death may be independent of consent for post-mortem examination. Joint tissues are not normally collected during post-mortem examination, and also may be removed for research when more extensive examination is not requested. We undertook a feasibility study aiming to obtain post-mortem knee joint tissues from 10 donors for research.
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Methods |
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Data are presented as median (range) or (interquartile range, IQR). Subgroups were compared by the MannWhitney test using Statistical Package for Social Science (SPSS, version 8, Chicago, USA). This study was approved by the North Nottinghamshire Local Research Ethics Committee and Sherwood Hospitals NHS Trust.
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Results |
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The process of seeking consent required approximately 1 h of direct contact with relatives and close friends of the deceased. Participants often looked to this as an extension of the bereavement counselling process and many expressed gratitude that some good might be derived from the death. Reasons for non-recruitment of the 223 families who did not meet with the study nurse included operational restraints (e.g. high workload did not always allow sufficient time for introduction of the study by bereavement officers), and appraisal by bereavement officers that relatives were too distressed to consider the research adequately. In either case relatives were not invited to participate in the study.
Donors were of similar age (median 80, IQR 7490) to non-donors (median 76, IQR 6683, Z = 1.9, P = 0.06), and were more likely to be male (90%) than were non-donors (49%, Z = 2.6, P < 0.01). Non-donors whose families met with the study nurse were also more likely to be male (73%) than were those whose families did not meet the study nurse (46%, Z = 2.6, P < 0.01). Coroners post-mortem examinations took place on similar proportions of donors (20%) and non-donors (19%, Z = 0.06, P = 0.96).
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Discussion |
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In seeking consent, bereaved next of kin need to be provided with support and supplied with clear, factual and unbiased information, while respecting their feelings and wishes [3]. In addition to next of kin, close friends of the deceased sometimes wished to be involved in the consenting process. We found that a dedicated Bereavement Centre provided an appropriate environment for these discussions. The person seeking consent must have advanced interpersonal and counselling skills.
We attempted to minimize distress to bereaved next of kin by approaching only those considered by the bereavement officers to be most receptive to tissue donation, and by minimizing delays necessitated by the consenting process. Only limited data were collected in this study to explore the experiences of those families who did not consent to donation of tissues. As soon as it was suspected that relatives had reservations about tissue donation, the bereavement officers or study nurse moved away from providing further information about the study towards a more general bereavement counselling approach, and consent was not sought. Although this may have denied some relatives the possibility of contributing to the research, any further attempt to seek consent or a more detailed understanding of the relatives reservations could have seemed coercive. Our findings suggest that relatives of deceased males were more likely to agree to meet with the study nurse, and consent to participation. This could either be due to an influence of gender on the researchers or on the relatives. Further studies would be required to determine whether participation can be predicted from demographic data such as age and gender.
In conclusion, we have found that post-mortem tissue collection for research remains feasible in the presence of a skilled, well co-ordinated, multidisciplinary team.
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Acknowledgments |
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We are grateful to the grieving next of kin for considering donating samples at such a difficult time. We thank all contributors, and also the Rev. J. Wood, Manager of Chaplaincy and Bereavement Services, Kings Mill Hospital, for their advice and support.
Conflict of interest
The authors have declared no conflicts of interest.
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References |
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