Evaluating the Implementation of a Kidney Supportive Care program Queensland Experience

Transcription

1 Evaluating the Implementation of a Kidney Supportive Care program Queensland Experience Prof Ann Bonner PhD, RN School of Nursing, Kidney Health Service, Metro North Hospital and Health Service NHMRC Chronic Kidney Disease Centre of Research Excellence ann.bonner@qut.edu.au

2 Metro North Hospital and Health Service Data: CKD.QLD Registry

3 Kidney Supportive Care Program (KSCp) SEED innovation funding MNHHS Collaboration between Palliative & Supportive Care Service and Kidney Health Service Integrated, community-based service for all of MNHHS KSCp commenced Feb 2016 as a pilot program Person centred-care (tailored and flexible) MDT care plan communicated to GP and renal team KSCp referral for Symptom management Decision-making (conservative care; considering to stop KRT) Advance care planning

4 Integrated KSCp Clinical Nurse Consultant Renal Pharmacist Patient (& Carer) Palliative Care Physician Social Worker Adv Trainee (Nephrology)

5 General nephrology service Dialysis

6 Research into KSCp Funded by Australian Centre for Health Service Innovation (AusHSI) Implementation Grant (CI: Bonner & Healy) CKD.CRE (CI: Hoy, Healy & Bonner) Implementation Science methodology Prospective, longitudinal, mixed-methods design (quantitative and qualitative data collection) Feedback to clinical team and executives in real time

7 Methods Clinical and operational data Patient-, carer- and clinician-reported measures Medical records Staff, patient and carer perspectives Semi-structured interviews (CFIR framework) Health economic outcomes Healthcare utilisation QALYs Service costs and savings

8 Referrals to KSCp

9 KSCp patient demographics Median age = 71.3 Occupation

10 Aboriginal and Torres Strait Islander ATSI Total Total number Female/Male 2/3 62/67 Age (range) 49.6 ( ) 74 ( ) CCI (median [IQR]) 6.0 ( ) 7 ( ) IPOS (mean ± SD) 25.2 ± ± 9.8 % KRT 80% 59% RUG-ADL (median [range]) 4 (4-4) 4 (4-18) AKPS (median [range]) 70 (60-70) 60 (40-80) ACP documented 80% 58%

11 % o f p a tie n ts C h a rls o n c o -m o rb id ity s c o re Clinical characteristics CKD stage C K D s ta g e Co-morbidity score (Charlson) Median score=7 IQR= S t a g e 4 S t a g e 5 S t a g e 5 D 0

12 S F -3 6 s c o re Baseline health-related quality of life (SF36) Q u a lity o f life s c o re s a t in itia l v is it 7 5 * * * * 5 0 R e fe re n c e p o p u la tio n m e a n P h ys ic a l M e n ta l 0 * * * * p < 0.0 1

13 Symptoms at baseline (IPOS-Renal) Most prevalent symptoms Most severe symptoms Weakness (90%) Pain (82%) Poor mobility (80%) Drowsiness (74%) Symptoms per patient Weakness Pain Poor mobility Drowsiness Difficulty sleeping Overall symptom burden Median = 12 IRQ=10 14 Mean score = 22.9±9.7

14 O v e ra ll IP O S s c o re IP O S s c o re Symptom management C h a n g e in s y m p to m s c o r e s b e tw e e n v is its C h a n g e in s y m p to m s c o r e s b e tw e e n v is its 3 0 * F ir s t v is it M o s t r e c e n t v is it -5.0 * p = % of KSCp patients reported improvement in overall symptom burden

15 Individual symptom management C h a n g e in s y m p to m s c o r e s b e tw e e n v is its C h a n g e in % o f p a tie n ts w ith s c o r e s 2 b e tw e e n v is its D e c re a s e d In c re a s e d D e c re a s e d In c re a s e d P a in S h o r tn e s s o f b r e a th * P a in S h o r tn e s s o f b r e a th * W e a k n e s s W e a k n e s s N a u s e a N a u s e a V o m itin g V o m itin g P o o r a p p e tite P o o r a p p e tite C o n s tip a tio n C o n s tip a tio n M o u th p r o b le m s D r o w s in e s s P o o r m o b ility M o u th p r o b le m s D r o w s in e s s P o o r m o b ility * * Itc h in g Itc h in g D iffic u lty s le e p in g R e s tle s s L e g s * D iffic u lty s le e p in g R e s tle s s L e g s * C h a n g e s in s k in C h a n g e s in s k in D ia r r h o e a F e e lin g a n x io u s D ia r r h o e a F e e lin g a n x io u s * F e e lin g d e p r e s s e d * F e e lin g d e p r e s s e d * IP O S s c o re *p < % o f p a tie n ts *p < (c h i s q te s t)

16 Symptoms case report: Mr A 58 years, dialysis Referred for symptom management 9 KSCp visits over 14 months Continues on dialysis * Slope significantly non-zero, p<0.05

17 Decision-making 30% (n=39) patients were supported to make decisions around dialysis options

18 Decision-making case report: Mrs D 84 years Referred for decision-making 5 children, lives with son, supportive family Extensive discussions with CNC about what is important: Spending time with family Going for walks Visiting husband every 2 nd day Mrs D asked what it would be like to be on dialysis Does not fear death: I m 84 and I ve had a good life Decides against starting dialysis: Let nature take its course

19 C h a rls o n c o -m o rb id ity s c o re C h a rls o n c o -m o rb id ity s c o re Characteristics of KSCp patients making decisions C o m o r b id ity s c o r e in th o s e m a k in g d e c is io n s a r o u n d d ia ly s is o p tio n s C o m o r b id ity s c o r e in th o s e m a k in g d e c is io n s a r o u n d d ia ly s is o p tio n s 8 * 1 2 * N o t s t a r t W it h d r a w C o n t in u e D ia ly s is d e c is io n 0 N o t s t a r t W it h d r a w C o n t in u e D ia ly s is d e c is io n *p < 0.0 5

20 Advance care planning Time before last when I went the question was: where do you want to die? And that was one question that I had never thought about because what, there s a choice? ~Patient 5

21 Patient perspective of KSCp You don t feel like it s a cattle station, you don t feel rushed. They provide you with information. They give you a sense of normality, that what you re feeling is normal, without glossing over stuff. ~Patient 10

22 Carer perspective of KSCp I m grateful because we ve done a lot of things together that we wouldn t have been able to do because we d be sitting at home bloody fretting. We re going out to see the family and going out to go shopping and do stuff and things that we just weren t going to bother doing, because what was the point? ~Carer 1

23 Staff perspective of KSCp How do I know it s working? Because I m seeing that my patients are having a much better end of life. It s making my role as their consultant or their primary clinician much easier, because I can help more people. I think it s an innovative and fabulous idea which is actually translated into real clinical change. ~Stakeholder 2

24 MNHHS Research Excellence Award

25 Acknowledgements Dr Carol Douglas Dr Helen Healy Ms Ilse Berquier Dr Katrina Kramer Ms Danielle Heffernan Ms Bernadette Taylor Ms Carla Scuderi Ms Pamela McNeil Dr Louise Purtell Prof Wendy Hoy Dr Marcin Sowa MNHHS and KSCp research participants