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Patients facing the choice of renal replacement therapy: What is the role of relatives?
Lucile Montalescot, Karine Legrand, Géraldine Dorard, Carole Ayav, Christian Combe, Benedicte Stengel, Aurélie Untas
To cite this version:
Lucile Montalescot, Karine Legrand, Géraldine Dorard, Carole Ayav, Christian Combe, et al.. Patients facing the choice of renal replacement therapy: What is the role of relatives?. European Health Psychology Society, Sep 2019, Dubrovnik, Croatia. �hal-03121073�
« Apparently there are different types of dialysis, one requires having a pipe in the belly etc. » « I don’t want to think about it, I
don’t want to anticipate, what will happen. It will be difficult enough when the time comes. »
56
Patients facing the choice of renal
replacement therapy: What is the role
of relatives?
•
Treatment choice (TC) is stressful for patients with chronic kidney disease (CKD)
(Harwood & Clarke, 2013)
.
•
Guidelines advise to proceed to a shared decision-making
(Haute Autorité de Santé, 2017).
•
Individual (e.g., way of life) but also social (e.g., meeting with peers) and family
factors (e.g., sharing information) influence decision-making
(Morton et al., 2010; Valson etal., 2018)
•
Most studies are retrospective, question exclusively patients and focus on the elderly.
INTRODUCTION
OBJECTIFS
Lucile Montalescot
1, Karine Legrand
2, Géraldine Dorard
1, Carole Loos-Ayav
2, Christian Combe
3,
Bénédicte Stengel
4, Aurélie Untas
11 Université de Paris, LPPS, F-92100 Boulogne-Billancourt, France. ; 2 Centre d’Epidémiologie Clinique, Inserm CIC-EC 1433, CHU de Nancy, Vandoeuvre-lès-Nancy, France; 3
Département de Néphrologie Transplantation Dialyse, Centre Hospitalier Universitaire de Bordeaux, Bordeaux, France. Inserm, U1026, Université Bordeaux Segalen,
Bordeaux, France; 4 Inserm, U1018, CESP Centre de Recherche en Epidemiologie et Santé Publique, Equipe 5, Epidémiologie Rénale et Cardiovasculaire. Université Paris Sud,
Villejuif, France
+
Explore patients and close others’
experience of advanced CKD
+
Investigate
how
they
view
treatment decision-making.
Lexicometric analysis : Application of
statistical analyses on a text corpus
Rhythm of
the illness
Considering
dialysis
Thinking about
CKD
Family and
transplantation
?
Facing daily life
with CKD
Listeners with
an opinion
Story-telling and
monitoring
Emotions
behind facts
50
« I hope that when I will
see [the nephrologist] on the 30th, she won’t tell me: « We are at this stage. » […] It worries me everytime I go to see her. »
« My son has done the examinations and he is compatible but I don’t want it. No, no, he is too young, he’s 25. I do not want to, he has his life ahead of him. »
« It’s his choice of course! I don’t think I have had an influence on him. I haven’t sought to have one. »
« He realizes that solutions exist and that, indeed they will be complicated time but, but times that we will face together. »
« The surgeon who had performed the surgery at the time was Dr. [Name], not
to mention names. » « It’s a source of worry. Among others. Because I always have sources of worry because of the rest. »
• According to participants, family has little influence on
TC except regarding living-donor transplantation.
• However, family members do express an opinion
regarding treatment choice.
• Thematic analysis on subgroups could highlight
differences between participants.
• Cognitive avoidance about renal replacement therapy
is common among patients.
• TC does not seem relevant to patients’ life today according to
participants’ discourse.
• Family member, partners especially, face CKD with patients by
keeping a positive outlook on the future.
Harw ood , L ., & Cl ark, A . M . (2013 ). Unde rstandi ng p re -di al y s is modal ity dec is io n -mak ing : a meta -s y nthes is of qual itati v e s tudi es . Inte rnation al journal of nu rsi ng s tudi es , 50 (1 ), 109 -120 ; Morton, R .L ., Tong ,A ., H ow ar d ,K ., Snelling ,P ., & W e b st er ,A .C .( 2 0 1 0 ). The vi ew s of pa ti en ts an d car e rs in tr ea tme n t decisi on mak ing for ch roni c ki dne y di sease : sy st em at ic re vi ew an d thema ti c syn thesis of quali ta ti ve st ud ies . Bm J, 3 4 0 , c1 1 2 ; V al son , A . T. , Asad , R . A ., Radh akr ishna n, R . C ., Sin ha , S. , Jac ob, S. , V arug hes e, S. , & Tami lar asi , V. (2 0 1 8 ). “Wh y I Chos e H em odi al ysi s Ov e r Pe ri toneal Di al ysi s” : An Opi ni on Sur vey Am ong In -Cen ter H em odi al ysi s Pa ti en ts . Pe ri ton eal Di aly si s In te rna ti o n al ,38 (4 ), 3 0 5 -3 0 8 ; Ha ute Auto ri té de San té [HAS] . (2 0 1 7 ). In suff isa nce rénal e chr oni que : an al yse des ai des à la décisi on et éla bor at ion d’ une mé thode pour DÉ CI DER ensem bl e d’ un mode de supp léance rénal e -Ar gu me n tai re .
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Acknowledgements –with the support of:
