Zelfzorg bij mensen met nierziekten. Prof. dr. A.A. Kaptein Medische Psychologie LUMC Leiden

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1 Zelfzorg bij mensen met nierziekten Prof. dr. A.A. Kaptein Medische Psychologie LUMC Leiden

2 Opbouw betoog geneeskunde en psychologie quality of life (QOL) = kwaliteit van leven zelfzorg implicaties voor onderzoek en zorg zie : View / Header and footer? 2

3 Drie benaderingen van patiënten met nierziekten psychoanalytisch/ psychotherapeutisch [< 1970] patiënt educatie [1960 nu] self management [1990 nu] zie : View / Header and footer? 3

4 Subdisciplines in psychologie en geneeskunde Geestelijke problemen Klinische Psychologie Psychiatrie Psychologie Geneeskunde Gezondheidspsychologie Medische Psychologie Lichamelijke problemen zie : View / Header and footer? 4

5 Wat is medische psychologie? Medische psychologie: het bestuderen van de mens in de medische situatie beschrijven, verklaren en veranderen van ziektegedrag geen psychopathologie, maar de meestal gezonde reactie op een moeilijke medische situatie versterken van wat patiënten zelf kunnen, samen met het sociale systeem, inclusief zusters en dokters zie : View / Header and footer? 5

6 Psychosocial aspects of chronic disease: ESRD as a paradigmatic illness stress psychopathology social support family issues dialysis unit culture SES depression anxiety marital satisfaction Cukor et al., JASN 2007, 18, zie : View / Header and footer? 6

7 The prediction of self-care behaviors in ESRD patients Voorspellen van zelfzorggedrag (drinken, eten) met coping, ziektepercepties, kennis en stress O Connor et al., J Psychosom Res, 2008, 65, zie : View / Header and footer? 7

8 Cognitief-gedragsmatige therapie: compliance Groepsbenadering bij HD om compliance met vochtbeperking te verhogen 1 x per week, 1 uur, 4 weken Self regulation: gedachten, gevoelens, gedrag IWG verbeterde, cognities veranderden in gewenste richting Sharp et al., Am J Kidney Dis 2005, 45, zie : View / Header and footer? 8

9 Quality of Life De functionele gevolgen van een ziekte en de behandeling ervan, zoals door de patiënt ervaren Schipper et al., 1996 zie : View / Header and footer? 9

10 Quality of Life QOL functionele gevolgen psychologische gevolgen sociale gevolgen zie : View / Header and footer? 10

11 Combinatie van het medisch model met kwaliteit van leven complicaties bij geboorte ziekte veroudering genetische predispositie ongevallen weefsel-/orgaanpathologie symptomen medische interventie afname pathologie Quality of life zie : View / Header and footer? 11

12 zie : View / Header and footer? 12

13 Behandeling Newman S, Steed L, Mulligan K Lancet, 2004, 364, Self-management interventions for chronic illness zie : View / Header and footer? 13

14 Selfmanagement Selfmanagement [zelfzorg]: the individual s ability to manage the symptoms, treatment, physical and psychosocial consequences and life style changes inherent in living with a chronic condition to monitor one s condition and to effect the cognitive, behavioural and emotional responses necessary to maintain a satisfactory quality of life Barlow et al., Pt Educ Counsel, 2002, 48, zie : View / Header and footer? 14

15 Zelfzorg Componenten van zelfzorg (Barlow et al., 2002) informatie vergaren medicatie gebruiken symptoommanagement managen psychologische gevolgen leefstijl afstemmen op ziekte sociale steun gebruiken effectief communiceren zie : View / Header and footer? 15

16 Effect of a Behavioral Self-Regulation Intervention on Patient Adherence in Hemodialysis. Christensen et al. Health Psychology, 2002, 21, zie : View / Header and footer? 16

17 Summary of Self-Regulation Protocol Introduction and rationale for the self-regulation approach and its relation to the dialysis treatment regimen (Session1). 2. Brief review of how and why fluid-intake guidelines are established and the immediate and long-term effects of nonadherence (Session 1) 3. An overview of the association between self-regulatory processes (i.e. self-monitoring, self-evaluation, self-reinforcement) and behavior. Examples of this overview include the effect of self-monitoring on enhancing awareness and perceived control over behavior and the association between reinforcement contingencies and the likelihood of repeating a behavior in the future (Session 2) 4. Instruction in self-monitoring skills and began homework self-monitoring of daily fluid intake, mood, behavior, setting, and the antecedents. A daily diary method was used with entries made each time fluid was ingested (Session 3) zie : View / Header and footer? 17

18 Summary of Self-Regulation Protocol Goal-setting discussion and patient goal setting for fluid intake between treatments. Homework assignment included each patient discussing goals with their renal care providers (Session 4) 6. Establishing self-administered reinforcement strategies. Both covert reinforcers (e.g. positive self-evaluation) and overt reinforcers ( e.g. engaging in pleasurable activities) were discussed. Homework assignment included identifying realistic and adaptive reinforcers (Session 5) 7. Teaching stimulus control, self-instruction, and related behavioral coping skills to promote regulation of fluid intake (Session 6) 8. Daily recording and evaluation of target behavior (i.e. fluid intake). Selfmonitoring was reviewed and discussed during weekly group meetings (Session 3-7) 9. Weekly self-evaluation of target behavior performance and interdialytic weight gain relative to goals. Patients use of behavioral self-regulatory coping skills also reviewed and discussed weekly group meetings. Any problems in meeting goals were discussed (Session 3-7) zie : View / Header and footer? 18

19 zie : View / Header and footer? 19

20 Fosfaatbinders Ziektecognities en behandelcognities sturen zelfmanagement [cognities = opvattingen] Behandelgroep controlegroep; voor, 1 mnd en 4 mnd na Glazen maag, ptn vertellen wat ze zien Kennis, begrip Karamanidou et al., 2008, 13, zie : View / Header and footer? 20

21 Foto mail The plastic stomach container, Phosphate Binding solution and the Phosphate solution The plastic stomach container is filled with Phosphate solution. The Phosphate Binding solution is contained in the glass bottle. zie : View / Header and footer? 21

22 The Binding process! zie : View / Header and footer? 22

23 A systematic review of psychological interventions for the treatment of nonadherence to fluid-intake restrictions in people receiving hemodialysis Sharp et al. Am J Kidney Dis 2005, 45, zie : View / Header and footer? 23

24 some success in decreasing IWG however: bias larger number of participants within controlled designs clearer description of intervention protocols Sharp et al. Am J Kidney Dis 2005, 45, zie : View / Header and footer? 24

25 QOL in gezinsleden die zorg geven aan HD/PD ptn 124 zorggevers Emotionaliteit en vitaliteit sterkst aangetast Een derde van de zorggevers was depressief voorlichting, sociale steun en psychologische steun moeten worden bestudeerd om te kunnen bijdragen aan methoden om QOL van zorggevers te verbeteren Belasco et al., 2006 zie : View / Header and footer? 25

26 p partner physician public zie : View / Header and footer? 26

27 Zelfzorg onderzoek bij mensen met ESDR in LUMC Van Dijk et al. Ziektecognities en overleving (submitted) Symptomen en QOL (in preparation) Thong et al. Sociale steun en overleving (NDT 2007) Timmers et al. Berkhout-Byrne et al. Daleboudt et al. Dekker F.W. Symptomen en QOL (NDT 2008) Self perceived health en overleving (Am J Kidney Dis 2008) Ziektecognities en QOL (Psychol Health 2008) Ziektecognities en zelfzorg (in preparation) Ziektecognities, tekeningen en SLE (submitted) NECOSAD zie : View / Header and footer? 27

28 Who s afraid of the empowered patient? A truly empowered patient is the ideal patient. Empowered patients will challenge us, yes, but they will also take their medicine and go for their tests. They will ask when they don t understand our instructions rather than simply ignoring them. And, most important, they will be more likely to get well, which will make us feel successful (p.1393). Who s afraid of the empowered patient? Chiaramonte, JAMA 2008, 300, zie : View / Header and footer? 28

29 Research-agenda: Beschrijven Verklaren Beïnvloeden QOL Zelfzorg Patiënt Partner Dokter Publiek zie : View / Header and footer? 29

30 Zorgagenda: Beschrijven Verklaren Beïnvloeden QOL Zelfzorg Patiënt Partner Dokter Publiek zie : View / Header and footer? 30

31 Drie benaderingen van patiënten met nierziekten psychoanalytisch/ psychotherapeutisch [< 1970] patiënt educatie [1960 nu] self management [1990 nu] zie : View / Header and footer? 31

32 Dank u! Reacties, overleg, onderzoek, klachten: zie : View / Header and footer? 32