Self-management behaviours of adult long-term survivors after allogeneic stem cell transplantation

Transcription

1 PROVIVO Patient reported outcomes in view of symptom experience & self-management of adult long-term survivors after allogeneic stem cell transplantation Self-management behaviours of adult long-term survivors after allogeneic stem cell transplantation Monika Kirsch, RN, MSc Institute of Nursing Science, University of Basel, Department of Hematologie, University Hospital Basel SBST Day (Berne, January 18 th, 2013)

2 Life after treatment How does he manage his medication intake? How is her physical activity? Does she use sun protective measures?

3 Background Favourable self-management is associated with positive clinical outcomes in chronic conditions 1 Scarce evidence on health behaviours post allogeneic stem cell transplantation (SCT) 2-4 Association between self-management behaviours and clinical & economic outcomes after SCT is unclear 1. NEWMAN, STEED, & MULLIGAN 2004 Lancet, 364, SYRJALA. et al J Clin Oncol, 23, MARKS et al Biol Blood Marrow Transplant, 15, BISHOP, et al Biol Blood Marrow Transplant, 16, KHERA 2011 Biol Blood Marrow Transplant, 17,

4 Framework self-management after SCT Action planning Problem solving Managing emotions Self-management Healthy diet after SCT Managing medical regimen Managing new life roles Decission making Medical self-management tasks Physical activity Non-smoking Sun protection Avoiding much alcohol Medication taking Partnership buiding LORIG & HOLMAN (2003) Ressource location & skill utilization

5 Clinical & Demographical Data Objectively assessed late effects Symptom experience Self-Management Emotional management Role management Medical management Experience of late effects

6 PROVIVO study aims 1. 1) To To examine develop the & validate prevalence a PRO of measuring self-management symptom tasks (i.e. experience medical related smoking, to late alcohol effects consumption, in adult survivors 1 vaccination, year after SC physical activity, dietary habits, sun 2. protection, To examine medication self reported adherence; symptom experience, role i.e. objective measured late effects and self-management in view of professional managing emotions, employment; managing emotional new life i.e. roles depression and & anxiety) managing medical SCT survivors and health 3. 2) to To compare assess the relationship prevalence between of specific symptom health experience behaviours and objective with burden health of recommendations late effects, survivors by perception the of late effects and self-management Swiss Federal Office of Public Health (FOPH) and with normative data of the Swiss population.

7 PROVIVO study overview July 2010 October 2011 November 2012

8 Methods Design: Cross-sectional multicenter study Convenience Sample: 373 adult allogeneic SCT recipients 1 year after treatment 45% women Mean age: 50.3 (SD 12.8) Years since SCT: (Median 7.1 IQR ) 146 (39.8%) with cgvhd (mild: 26.%; moderate: n=9.7%; severe: 2.7%) Setting: University Hospitals of Basel & Zürich

9 Variables & measurements (1) Emotional selfmanagement Measurement & scoring Anxiety & depression (14 items) Hospital Anxiety & Depression Scale, Score 8 indicates depression or anxiety Role management Work role & capacity Medical management Percentage of full-time employment (0= not working, 1-79%= part-time, 80% = full-time) Physical activity (4 items) Alcohol consumption (1 item) Physical active (yes/no), frequency (days), duration (minutes), & intensity (slightly to very strong), Meeting Swiss health recommendations: Being active for at least 30 min per day with moderate intensity (yes/no) Weekly frequency of alcohol consumption & volume of beer, wine, liquids/spirits: Categorization: Non-drinker, moderate drinker, severe drinker according to Swiss health recommendation

10 Variables & measurements (2) Medical management Smoking (1 item) Flu vaccination (1 item) Sun protection behaviours (6 items) Dietary habits (4 items) Medication adherence Measurement & scoring Currently smoking (yes/no) Received flu vaccination in the last year (yes/no) Sun screen use, staying in shade, wearing protective clothes (never, rarely, sometimes, often, always), intensity sunscreen factor used, amount of sunburns, acceptance of sunburns for tanning (yes/no) Frequency of intake of certain foods: Vegetables & fruits, diary products, meat, fish, fast food, Categorization according to Swiss recommandations (e.g. 5-a-day) Basel Assessment of Adherence Scale for Immunesuppressives (BAASIS), 6 items for patients taking IS, adapted version with 5 items (without timing adherence) for patients taking other medications, positive answer on one of questions classifies a patient as NA

11 Data collection Patient self report at annual follow-up visit Clinical & demographic data are collected from medical records and the transplant data base Data comparison source Swiss National Health Survey Data analysis Descriptive analysis 1. BUNDESAMT FÜR STATISTIK (2010) Gesundheit und Gesundheitsverhalten in der Schweiz 2007

12 Results: Role management Reasons for not working (%) Retirement pensioner Houseman/-wife In education 4.7 Unemployed 0.8 Invalidity pensioner other

13 Results PROVIVO: Emotional management 14.7% Anxiety 11.3% Depression 5 Most prevalent symptoms Feeling slowed down 67.2% Tense or wound up 64% Estimated prevalence of affective disorders in CH populations: 10% 1 Feeling restless 48.6% Frightened feelings 44.6% Problems to relax 43.3% 1. SCHWEIZERISCHES GESUNDHEITSOBSERVATORIUM (2003).

14 PROVIVO - Physical activity

15 PROVIVO - Physical activity: Comparison with CH population 1. BUNDESAMT FÜR STATISTIK (2010) Gesundheit und Gesundheitsverhalten in der Schweiz 2007

16 PROVIVO Dietary habits: Daily consumption

17 PROVIVO Dietary habits: Weekly consumption Unfavourable consumption

18 PROVIVO - Dietary habits: Comparison with CH population 1. BUNDESAMT FÜR STATISTIK (2010) Gesundheit und Gesundheitsverhalten in der Schweiz 2007

19 PROVIVO Alcohol comparison CH 1. BUNDESAMT FÜR STATISTIK (2010) Gesundheit und Gesundheitsverhalten in der Schweiz 2007

20 PROVIVO Smoking comparison CH 1. BUNDESAMT FÜR STATISTIK (2010) Gesundheit und Gesundheitsverhalten in der Schweiz 2007

21 PROVIVO - Seasonal flu vaccination Comparison with CH 58.1% in PROVIVO sample received seasonal flu vaccine 50-60% 1 CH population 65 receive seasonal flu vaccine 1. BAG (2010)

22 PROVIVO - Sun protection 12.3% had a sunburn in the last year 2.2% took the risk of sunburn for tan

23 PROVIVO Use of sun screen factor Used sun screen factor

24 PROVIVO Medication non-adherence (N=268) Immunesuppressant s (IS) n=98 Other medications n=170 Taking non-adherence 33.7% 37.6% Timing non-adherence 54.8% n.a. Drug holidays 4.3% 12.0% Dose reduction 4.1% 7.3% Non-persistence 3.1% 2.4% Overall 63%

25 Discussion U N I V E R S I T Y OF B A S E L (1) Key findings Return to work YET huge gender differences Lower prevalence of unfavorable behaviors e.g. smoking PROVIVO 26.1% full-time 40.5% part-time Gender differences full-time: 23% 42% 13.1% Comparison with studies 29% full-time 31% part-time 1 full-time: 43% 87% 2 28% % BIERI et al Bone Marrow Transplantation, 42, KRONE-GERMANN & DE CHAMBRIER 2011 Die Volkswirtschaft,1, BUNDESAMT FÜR GESUNDHEIT (BAG) 4. REBHOLZ et al Br J Cancer, 107, SYRJALA. et al J Clin Oncol, 23,

26 Discussion (2) Key findings PROVIVO Comparison with studies Concerns in regard to physical activity & dietary habits Inactive or only partially active 12.1/48.1% 16/43% 1 Eat 5-a-day 10.5% 29% % 2,3 Problematic medication taking & timing non-adherence (na) with IS 33.7% Taking na 54.8% Timing na % 4, % 4,5 1. BUNDESAMT FÜR GESUNDHEIT (BAG) 2. SYRJALA. et al J Clin Oncol, 23, ELLIOT et al Preventive Medicine, 40, BECKEBAUM et al Transplant international, 24, DOESCH et al. (2010). Transplantation proceedings, 42,

27 Limitations Limitation Effect of influencing factors (e.g. years after SCT, gender, education, cgvhd unclear) Relevant self-management variables not considered Only German speaking patients were included What to do?! Multivariate analysis considering these factors Potential variables should be investigated in future research: e.g. adherence to follow-up protocol, selfcare activities, relaxation practice Multilingual questionnaires should be used

28 Future research Future research Barriers for self-management? Self-management in children/adolescents and their parents? Meaning of self-management after SCT from the patients perspective? Self-management during active treatment phase? Relationship behavior & clinical outcomes? What to do?! Assessment of potential barriers (e.g. Knowledge, motivation) Survey by questionnaire or interview Qualitative interviews Survey by questionnaire or interview Use of prospective design/ Intervention research

29 Conclusion Study revealed problematic areas of selfmanagement (e.g. employment, dietary habits, medication non-adherence ) Clinical practice should pro-actively support patients in their self-management activities Future studies should measure impact of self-management support in patients clinical outcomes

30 Acknowledgments Many thanks to all patients! This research project would not have been possible without the support of many people: Prof. Sabina De Geest, Institute of Nursing Science Basel Dr. Jörg Halter & Team, University Hospital Basel Dr. Urs Schanz & Dr. Gayathri Nair & Team, Anna Götz, MSc University Hospital Zürich: Dr. Georg Stüssi, Oncology Institute of Southern Switzerland, Bellinzona Prof. Fabienne Dobbels, KU Leuven, Belgien Dr. Sandy Mitchell & Team, Outcomes Research Branch, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, United States Dr. Ethan Basch, Memorial Sloan Kettering Cancer Center, New York,