Archive for January, 2018

Symptom experience in non-dialysis-dependent chronic kidney disease: a qualitative descriptive study

A study published by Pugh-Clarke KRead SCSim J in the Journal of Renal Care in December 2017 suggests that patients with CKD stages 4 and 5 may have a high symptom burden. Whilst symptom burden in patients with advanced CKD managed without dialysis has been likened to that of palliative care cancer populations, there is little information about the nature and range of symptoms in earlier stages of the CKD trajectory.

The above-mentioned paper reports the findings of the preliminary phase of a study aimed at exploring the symptom experience in patients with CKD stages 4 and 5. Symptoms attributable to impaired kidney function are important determinants of quality of life and functional status in patients with chronic kidney disease (CKD). As a result, it is considered that symptom assessment and subsequent control are prerequisites of high-quality care in this patient population.

How was the study done?
Eighteen semi-structured patient interviews were conducted, using an interview schedule developed specifically to guide discussion. Data were analysed using thematic analysis to identify symptom categories and thematic patterns across the patient experiences.

Patients reported a wide range of symptoms, with over 50 different categories and sub-categories emerging from the interview data. Symptom categories could be broadly classified into physical symptoms, such as ‘Altered taste perception’, ‘Sleep disturbance’ and ‘Fatigue’, and psychological symptoms, such as ‘Forgetfulness’, ‘Poor concentration’ and ‘A sensation of gradually slowing down’.

It is interesting to note that when questioned further, patients indicated that they would not usually report their symptoms to clinicians. This emphasises a need for clinicians to incorporate symptom assessment into routine clinical consultations.


Spain: the world leader on organ donation

For the 26th consecutive year, in 2017, Spain reached the great record of 46.9 donors per million population, with a total of 2,183 donors, increasing the number of donors by 30% in the last three years. 6 people have donated organs every day and 14 transplants have been performed daily. This has made it possible to perform 5,259 organ transplants, surpassing for the first time the figure of 5,000 transplants. As per the Health Ministry’s plans, Spain is working towards a goal called 50×22: 50 people per million to donate by 2022, and 5,500 transplants that year.

On 11 January 2018, the Minister of Health, Social Services and Equality, Dolors Montserrat, announced that “Spain remains the world leader in donation and transplants thanks to the generosity of donors and their families”. He further praised health professionals, the ONT (National Office for Transplantations), the National Health System and emphasized “the firm and determined commitment of this government to give life to those who need it the most “.

Spain is unarguably an example for the rest of the world in terms of organ donation. It’s all the more so impressive that the country maintained its gold standard despite austerity cuts due to the economic crisis.So what is it that makes Spain such a success story? A key element, often brought up by detractors of a “simple” Opt-out system is the creation in 1989 of the National Office for Transplantations (ONT), responsible for overseeing and coordinating organ donation and transplant policies. In addition to supporting professionals in their work, the ONT, through its regional coordination offices, fosters increased collaboration between hospitals’ intensive care units and the rest of hospital services, including especially emergencies – a measure that formed part of the ONT 2015 Strategy.

In addition, Spain considers donation after circulatory death e.g in which circulation, heartbeat and breathing have stopped (as opposed to brain death in which all functions of the brain have stopped). Donations in the case of cardiac arrests are said to play a significant role in the expansion of the number of transplants, with donors in cardiac arrest now representing 26% of the total number of donors. According to the Spanish Ministry of Health, 91 hospitals across the country, from 16 Autonomous Communities, are already accredited for this type of donation.

Furthermore, Spain considers organ donation from those over the age of 65 – with some donations taking place with donors age 80 – while some countries set a maximum age for organ donation.

Finally, the appropriate training of intensive care doctors when a person dies in conditions that allow organ donation is a priority in the country.

All these elements make it so that organ donation is routinely considered when a patient dies, irrespective of the circumstances of death. That contributes to establishing a “culture of donation” in the country as illustrated by the 2017 figures with family refusals being at 12.9%, their historical minimum, and down to 6.5% in the case of donors in cardiac arrest.

Sources: Politico

UK: towards an opt-out system for organ donation?

Last October, Theresa May initiated plans to implement an Opt-out system in the UK with a view to increasing the availability of organs for people in need of a transplant. Already in place in some EU countries (Belgium, France, Spain, etc.), the system relies on presumed consent from the deceased person to donate his/her organs at the time of death. Under this system, people who are unwilling to donate their organs are to expressly take steps to make this known to the Administration. It is tempting to see the Opt-Out system as the obvious solution to increase donation rates. However, detractors of the UK Government initiative claim that there is no sufficient evidence that this is so. Indeed, in practice, the consent from the family is always being sought, including in Opt-Out systems and that is more where the issue lies.

In order to progress on this matter, the UK government will launch a public consultation asking three questions: how much say should families have in their deceased relative’s decision to donate their organs? When would exemptions to “opt-out” be needed, and what safeguards will be necessary? How might a new system affect certain groups depending on age, disability, race or faith?

The last question touches on the issue of the lack of organs from ethnic minorities with only about 6% of donors being black or Asian, although those groups make up about 10% of the population in the UK. Is the question of organ donation linked to culture, faith and beliefs? Probably. But thanks to clear policies, appropriate implementation mechanisms, awareness raising, communication and training professionals, things can certainly change.

Scepticals believe the Government should not be moving towards an Opt-Out system until there is evidence that such system is successful and it is evident that it won’t undermine people’s trust in the system in the long-term. It might however be more appropriate to change perspective and think about how to implement an Opt-Out system that works, rather than about whether to implement such a system or not.


Organ donation in France: a snapshot

It has been about a year since a new law on organ donation from deceased persons was passed in France, in an effort to boost donation numbers in the country. Although presumed consent was already in place in France prior to 2017, donation would not take place unless accepted by the family. The new law was supposed to overcome this barrier by offering people easy ways to express their refusal to donate one or several organs. One option consists in subscribing to an online “refusal registry” allowing people to specify which organs one agrees to donate or not.

In addition, it is possible for the family of the deceased person to report a refusal “expressly stated to the family either in writing or orally”. The responsibility is thus on the person reporting on his/her next-of-kin’s refusal to sign a document confirming such refusal. Although convincing in theory, these measures are unlikely to be sufficient in practise: unless patients can also expressly state their willingness to donate (in addition to not donate), in practise doctors would not take organs from a deceased person against the will of the family. Belgium has recently adapted its national legislation on the matter (presumed consent in place since 1986) with the law now requiring that all citizens aged 18+ fill in a form where they specifically state whether they are for or against organ donation. This has enabled organ donation in Belgium to increase from 33000 donors in 2005 to 220 000 donors in 2015.

In order for donations numbers to grow, it appears quite clearly that a legal mechanism supported by awareness raising on the need for all to inform their family or public authorities of their position on organ donation is key. Having said that, the importance of setting up a dedicated body responsible for implementing the legal framework and fostering coordination, training and information – shall not be underestimated.