|Year : 2020 | Volume
| Issue : 3 | Page : 208-212
Immediate donation of eyes after life: The first prospective, nurse driven, smart phone-based observational study on cornea donation in India
Avnish Kumar Seth1, Twinkle Singh2, Preeti Monga3, Swati Kalra4, Minimole John5, Lalita Thambi6, Girja Sharma7, Doli Biswas8, Ratna Rana9, CA Leelamma10, Mary Panoose11
1 Director, Fortis Organ Retrieval and Transplant, Fortis Memorial Research Institute, Gurugram, Haryana, India
2 Coordinator, Fortis Organ Retrieval and Transplant, Fortis Memorial Research Institute, Gurugram, Haryana, India
3 Director, Project Jyoti, Dr Shroff's Charity Eye Hospital, New Delhi, India
4 Eye Donation Counselor, Dr Shroff's Charity Eye Hospital, New Delhi, India
5 Chief of Nursing, Fortis Escorts Heart Institute, New Delhi, India
6 Chief of Nursing, Fortis Memorial Research Institute, Gurugram, Haryana, India
7 Chief of Nursing, Fortis Hospital, Shalimar Bagh, New Delhi, India
8 Chief of Nursing, Fortis Hospital, Anandapur, Kolkata, West Bengal, India
9 Chief of Nursing, Fortis Escorts Hospital, Faridabad, Haryana, India
10 Chief of Nursing, Fortis Flt. Lt. Rajan Dhall Hospital, New Delhi, India
11 Chief of Nursing, Fortis Hospital, Noida, Uttar Pradesh, India
|Date of Submission||02-Apr-2020|
|Date of Acceptance||31-May-2020|
|Date of Web Publication||30-Sep-2020|
Dr. Avnish Kumar Seth
Fortis Memorial Research Institute, Sector 44, Gurugram - 122 002, Haryana
Source of Support: None, Conflict of Interest: None
Aim: This study aims to evaluate the efficacy of the Immediate Donation of Eyes after Life (IDEAL) protocol in establishing and monitoring hospital-based cornea retrieval programs. Methods: Nursing staff was sensitized to the process of cornea donation (CD), contraindications, and counseling by holding workshops and role-plays. All deaths in each of the participating hospitals of the prospective study were reported on WhatsApp “Code Angel Group” in a specific format. Each death was evaluated to rule out any contraindication to CD, the family was approached by the nurse on duty and counseled for donation. In case of negative or equivocal response to counseling for CD, smart phone-based messages were sent by eye bank (EB), followed by a phone call. Cornea retrieval was carried out by the same EB throughout the study period. In case of negative consent to donation, follow-up phone call to the next of kin at 1–2 weeks was done and response recorded. Results: Of 2140 deaths recorded, 1540 (71.9%) were ineligible for donation, largely due to sepsis. Of the remaining 600, counseling was done in 484 (83%). Ninety-nine of 484 (20.5%) families consented to donation. Counseling was carried out by a total of 70 nurses. Of the 45 nurses who counseled 3 or more families, conversion rate for CD was above 50% in 4, 40%–49% in 2, 30%–39% in 5, 20%–29% in 11, and below 20% in 12. Conclusions: Nursing teams on duty, with brief training on CD, can effectively drive the CD program in hospital setting.
Keywords: Cornea donation, hospital-based cornea retrieval, nursing staff, smart phone
|How to cite this article:|
Seth AK, Singh T, Monga P, Kalra S, John M, Thambi L, Sharma G, Biswas D, Rana R, Leelamma C A, Panoose M. Immediate donation of eyes after life: The first prospective, nurse driven, smart phone-based observational study on cornea donation in India. Indian J Transplant 2020;14:208-12
|How to cite this URL:|
Seth AK, Singh T, Monga P, Kalra S, John M, Thambi L, Sharma G, Biswas D, Rana R, Leelamma C A, Panoose M. Immediate donation of eyes after life: The first prospective, nurse driven, smart phone-based observational study on cornea donation in India. Indian J Transplant [serial online] 2020 [cited 2021 Jul 30];14:208-12. Available from: https://www.ijtonline.in/text.asp?2020/14/3/208/296884
| Introduction|| |
Corneal blindness is a major public health concern, with as many as 1.2 million people blind from corneal diseases in India alone. Corneal transplantation is the only viable option for this subgroup of the blind. Another critical metric is the estimation, based on the current utilization rates and safe donor eyes, that 270,000 cornea donations (CDs) are required annually, to perform the required 100,000 corneal transplants in India. At present, less than a quarter of the demand for donations is met, posing a critical challenge for public health specialists and the community at large.,,,,
Hospital Cornea Retrieval Program (HCRP) thus becomes an important partner to eye banking services, in terms of both, promotion of CD, as well as sensitization of donor families.,, The Immediate Donation of Eyes After Life (IDEAL) protocol was set up with an aim to improve the HCRP by the evaluation of every death for CD and counseling by trained nursing staff from the hospital and also smartphone-based counseling from the eye bank (EB).
| Methods|| |
The IDEAL program was launched as a prospective study across six tertiary care hospitals in the National Capital Region of Delhi and one hospital at Kolkata in Eastern part of the country. Data were collected from January 2017 to July 2019. All deaths in each of the participating hospitals were reported on WhatsApp “Code Angel Group” in a specific format [Table 1] by the nursing supervisor (NS) on duty. The WhatsApp Group (WG) comprised of staff from medical administration, nursing, and experts from the field of organ donation (OD) and CD. Each death was evaluated by the nurse on duty to rule out any contraindications to CD [Table 2] and the same was brought out in the first message. Inclusion criteria-all deaths in the participating hospitals Exclusion criteria those with contra-indications to corneal donation [Table 2]. In case, there was no contraindication, the family was approached by the nurse on duty and counseled for CD. The response of the family was documented as yes/maybe/no in the second message sent to the group [Table 1]. If the family said maybe or no to CD, the EB was informed. Two messages were then sent to the family by the EB at interval of 5 min highlighting the need for CD in the country, the process, lack of mutilation and how the family had the opportunity to make a difference in someone's life. The EB then called the family after 15 min to get a final answer which was then communicated to the WG. Experts in CD and OD carried out training workshop for nursing staff at each of the hospitals before launching the program and then at every 6 months. Two training capsules of 1 h each were carried out on a given day from 1 pm to 3 pm to allow for change of shift and ensure maximum participation. The training covered the process of CD, contraindications, counseling and role-play. Data from each of the participating centers were maintained in Excel sheets on a daily basis. The flow of IDEAL protocol is shown in [Figure 1]. Cornea retrieval was carried out by the same EB throughout the study. One week from the day of death, a call was made to the family to understand how they felt on being approached for CD in their hour of grief and the response recorded in a format. Outcomes-the time interval between the first training workshop and first CD in the hospital was recorded. The percentage of CD were recorded.
Variables were presented as mean and stan- dard deviation or as frequencies (percentage). Continuous variables were analyzed using Student's t-test or ANOVA. Kolmogorov– Smirnov test was used for testing normality. Nonparametric variables were compared using Mann–Whitney U or Kruskal–Wallis tests as appropriate. The Pearson's χ2 test or Fisher's exact test was used for categorical variables. P<0.05 was considered to indicate a statistically significant difference. The statistical analysis was performed using Epi infoTM Version 7.1, Division of Health informatixs and surveillance, Center for Disease Control, Atlanta, USA.ext.
Declaration of patient consent
The patient consent has been taken for participation in the study and for publication of clinical details and images. Patients understand that the names, initials would not be published, and all standard protocols will be followed to conceal their identity.
The study has been approved by Institutional ethics committee of Institutional Ethics Committee, Fortis Memorial Research Institute and ECR/223/Inst/HR/2013/RR-19). The study was carried out in accordance with principles of Declaration of Helsinki.
| Results|| |
A total of 408 nurses underwent training in CD in 11 sessions during the study. Of 2140 deaths recorded, 1540 (71.9%) were ineligible for counseling due to contraindication to CD. The nature of contraindications is shown in [Figure 2]. Of the remaining 600, counseling was done in 484 (83%). Reason for not counseling in 106 patients was nonavailability of or a disturbed/agitated family in 49, high total leukocyte count leading to doubt of sepsis in 21, uncertainty on cause/time of death in 16 and for no apparent reason in 20. Ninety-nine of 484 (20.5%) families consented to donation. Ninety-seven of them said yes to the NS and additional intervention by EB by text and phone-call resulted in only two extra conversions. A summary of the results of IDEAL study is shown in [Figure 3]. The median time interval between first training workshop for nurses and the first CD in the hospital was 52 days (range 48–61 days). Counseling was carried out by a total of 70 nurses. Of the 45 nurses who counseled 3 or more families, conversion rate for CD was above 50% in 4, 40%–49% in 2, 30%–39% in 5, 20%–29% in 11, and below 20% in 12. In five instances (age above 80 years in 2, no medico-legal clearance from police in 2 and on-availability of technician in EB), cornea retrieval could not be done despite the families approaching us for the same.
|Figure 2: Reasons for contraindication to cornea donation in 1540 patients|
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|Figure 3: Summary of results of Immediate Donation of Eyes after Life study|
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Follow-up calls were made to 53 families who had not consented to CD. In 24, no meaningful conversation could take place due to nonavailability or unwillingness of family members to discuss the subject. Of the remaining 29, 12 (43%) said that they were not in a position to decide at the time of death of a family member, 8 (26%) were not interested in the topic while 2 (7%) each spoke about religious issues, myths, negative hospital experience, and divided family opinion on CD. Only one family rued their decision of not donating and wished they had made the correct choice during their hour of grief.
| Discussion|| |
There is no doubt that the list of patients that await corneal transplants continues to be a constantly growing backlog, despite several private and public attempts at promoting corneal donation. While public awareness and promotion of eye donation are traditionally part of the activities of EBs, there are few fully functional EBs in India, and so their impact is also limited. In addition, proper training and motivation of health-care professionals is also essential to facilitate CDs.,,,
Chopra et al. reported on their experience with 365 hospital-based deaths. In their study, 323 (88.5%) of the next of kin were contacted with requests for CD. They reported that consent was obtained in 212 cases (65.5% of requests). Of these, 110 pairs of corneal buttons and 10 globes of sclera were utilized for surgery, giving an overall procurement rate of over 30%. In fact, they also reported that the efficient notification and “on-call” retrieval system led to very rapid corneal retrieval, resulting in an average death to storage medium time of <2 h.
In another study that highlights the importance of motivation, Tandon et al. evaluated the responses to requests for eye donation from relatives of postmortem cases in a tertiary care hospital. They found that out of a total of 159 potential donors out of 721 postmortem cases, as many as 66 (41.5%) were willing for donation, following counseling. They further reported that literacy, socioeconomic status, and prior knowledge of eye donation of the next kin had no correlation with donor corneal tissue procurement. Their findings reiterate that active counseling by a motivated team can be effective even in families with no prior knowledge of corneal donation, and that it is not dependent on the socioeconomic status of the next of kin.
Nurses, especially in intensive care units in tertiary care hospitals, constitute a major potential resource for increasing eye donations. They often have an enviable rapport and open channel of communication with patients and relatives. They can motivate both patients and relatives to pledge and donate eyes, thus positively influencing the HCRP. One of the biggest barriers to CD is the lack of awareness at all levels and gaps in the knowledge on process of donation and its implications. In case timely counseling is provided, along with a credible source ready to dispel any misconceptions, many families can be motivated for CD.,,,,,,,,
In the IDEAL protocol, NS and nurses underwent a brief training module for CD before commencement of the study. This meant that there was a well-informed, motivated task force, ready to counsel the aggrieved families. Counseling was carried out in a dedicated room with posters of CD and OD displayed on all walls and using printed counseling material, specifically created for this purpose by the team. Since all of the stakeholders for CD, except the EB, were part of the same WG, there was a steady, constant, and real-time exchange of information.
Initial difficulties were faced in filling and sharing of details in the WG by nursing staff. While deaths in most ICU and wards were invariably covered, mortality in the emergency department and pediatric ICU were not included. Delay in sharing information on WG for more than 1 h after death, often attributed to paucity of time, was monitored and corrected with repeated counseling. There were times when there was difficulty in interpretation of diagnosis and contraindication to CD by nursing staff, for example, “Waldenstrom's Macroglobulinemia.” This was resolved by clarification from doctors on duty or by real-time exchange on the WG. Reluctance on the part of nursing staff in approaching a grieving family was often noted in the initial stages and was corrected by daily audit, feedback, and reinforcement. It was considered important, especially in the private sector, that the NS take clearance from the doctor on duty before approaching the family for CD. There were 49 instances when the treating team felt that the family should not be counseled for CD as they were too agitated/disturbed by the loss of a loved one. Belligerence, aggression, and even violence against the hospital staff following the loss of a loved one, borne out of ill-conceived mistrust against the medical community, is a relatively new and unfortunate aspect of hospital practice in India and has to be incorporated into the CD algorithm.
Lack of clarity on contraindications to CD among doctors and paramedical staff, despite decades in this field of tissue donation, was a matter of concern. In fact, there were instances when we were able to retrieve organs such as heart, liver, and kidneys but the EB was reluctant to retrieve corneas because of raised white cell count. It required considerable effort to streamline the process where-in sepsis was considered a contraindication to CD only if sepsis/septicemia/septic shock was mentioned in the cause of death. The issues were not restricted to the hospital staff. The staff from EB, perhaps daunted by the thought of travel on a cold winter night, often quoted previous cataract surgery or a systemic malignancy as a contraindication to CD and had to be counseled. Death due to advance malignancies, unless hematological or related to eye ball, are not a contraindication to CD as cornea is an avascular structure and hence not a site for distant metastasis. Patients dying due to poisoning other than due to cyanide are also eligible for CD. Recognizing this lacuna in the field of CD, a national conference on “Revisiting contraindications to CD” was hosted by us in the National Capital Region on January 21, 2017. The faculty included experts from the National Program for Prevention of Corneal Blindness, Eye Bank Association of India, and National Organ and Tissue Transplant Organization. Literature on each contraindication was reviewed by experts in the field and incorporated into the IDEAL protocol. The recommendations are shown in [Table 3].
|Table 3: Revised contraindications suggested during national summit on “revisiting contraindications to cornea donation” in 2017|
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The counseling abilities of the nursing staff and their enthusiasm toward CD were heartwarming. We made sure that the messages in the WG mentioned the name of the nursing staff dealing with the family on CD. This brought about ownership into the program and along with that recognition for the extra effort being put in by the staff. Felicitation ceremony was done during the National CD Fortnight celebrations and awards like “best hospital in CD” were announced. The nursing staff with the best conversion rates was felicitated. This proved to be an excellent morale booster for in this highly skilled, overworked, and underpaid profession in the country.
The study also emphasized the importance of human contact during counseling for CD as majority of consents were obtained by counseling in person and only two additional consents happened after remote counseling by staff from EB. Follow-up calls made by us reinforced the fact that families do not mind being approached for CD despite their hour of grief. Furthermore, a negative experience at the hospital precludes acceptance for CD. The need for on-going awareness drives is highlighted by lack of consent to CD due to myths, religious issues, and conflicting family opinions.
Our study is the first of its kind to provide an objective assessment of the impact of involvement of nursing teams and use of smartphones in the field of CD.
There have been several studies that have aimed to assess knowledge, aptitude, and practice patterns pertaining to CD, as well the impact of training on the same. Most of them have shown that there is a definite need for sensitization of doctors, hospital staff, and general population alike. Some authors have also shown that education can positively impact the rates of cornea retrieval. In our study, one in five of the families counseled agreed to eye donation, a statistic that is both, heartening, and impressive.,,,,,,,,,,,,,,
Limitations of the study
The IDEAL protocol pilot, therefore, is the first study to effectively demonstrate the effect of a well-designed protocol to actively promote eye donation by involving all the stakeholders: the primary care givers, next of kin, and the EB, using the smartphone. In our opinion, this is why the rates of corneal retrieval have been so remarkably influenced in the relatively small duration.
The obvious lacuna of this pilot study is that despite being multi centric, the pilot was localized to India, and also one organization. However, given the diversity of the patient demographic that the group of hospitals cater to, including foreign patients, we believe that the results can be extrapolated worldwide. We also believe that while the barriers to eye donation may be region specific, the techniques of grief counseling and outreach transcend barriers of ethnicity, religion, language, and region. For this reason, we believe that the IDEAL protocol may be an important tool for promoting hospital-based cornea retrieval programs.
| Conclusions|| |
Globally, there is an undeniable gap between the supply and demand for donor corneas, and India is no exception. Hospital-based cornea retrieval programs can have a significant impact on eye donation. The IDEAL protocol is the first program in the country driven by nursing teams and smart phone-based applications. We have shown that the nursing teams on duty, with brief training on CD, can effectively drive protocol on consent in hospital setting. Once the family has said no/maybe, additional counseling by messaging and phone calls does not significantly impact the consent rate. Families do not feel any anguish at being approached for CD in their hour of grief.
The IDEAL protocol is an effective tool for establishing and monitoring hospital-based cornea retrieval programs.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2], [Figure 3]
[Table 1], [Table 2], [Table 3]