Cancer survivorship: research and clinical practice in the Netherlands
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1 Cancer survivorship: research and clinical practice in the Netherlands Prof dr Irma Verdonck-de Leeuw VU University Medical Center / Cancer Center Amsterdam Dept of Otolaryngology Head & Neck Surgery VU University Dept of Clinical Psychology Amsterdam, The Netherlands
2 My background Psychologist, speech therapist, linguist Professor Living with cancer Dutch Cancer Society / Alpe d HuZes Foundation Special Interests: -Quality of life in cancer patients and their relatives -Psycho-oncology -Supportive care and e-health -Voice, speech, and swallowing function
3 Alpe d HuZes Foundation Very succesfull fund raiser: Over 10 million euros in By cycling up and down the Alpe d Huez (France) 6 times on one day.
4 Cancer in the Netherlands 2010: Incidence (16 million inhabitants) Overall survival rate 55% Prevalence: Estimations for 2015: Incidence Prevalence
5 Cancer in the Netherlands and supportive care Guidelines: Tumor specific guidelines Palliative care Rehabilitation Screening for psychosocial care Netherlands Psychosocial Oncology Society: about 250 members National Cancer Program : one of the goals: Screening for psychosocial care in all oncological centers in the Netherlands in 2010
6 Disease management Supportive care comes within the responsibility of several care providers: surgeons, radiation and medical oncologists, primary care physicians, and various psychosocial and allied health service providers. These care providers often have disposal over only part of the relevant information and communication between care providers regarding wellbeing and psychosocial functioning is often limited. Because of this fragmentation of continuity of care, patients and families often complain about feelings of powerlessness and a lack of guidance. Structured monitoring quality of life Stepped care programs, including self-help E-health Patient empowerment
7 Structured monitoring quality of life: OncoQuest
8 OncoQuest: Quality of life profile HADS EORTC QLQ C30 EORTC QLQ H&N35
9 Stepped care The goals of stepped care are to: - simplify the patient pathways - provide access to more patients - correspond to patient s needs - improve patient well-being - cost reduction
10 Stepped care example of a model targeting depression Step 1: Step 2: Step 3: Stap 4: Watchful waiting Self-help Problem solving therapy Psychologist/ Internet / book nurse antidepressiva Example of number of patients in: (recovered) out: Week
11 Research: Guided self help targeting anxiety and depression
12 Research: Guided self help targeting speech, swallowing and shoulder dysfunction
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14 Research: Alpe d HuZes Cancer Rehabilitation Program Aim: To evaluate the cost-effectiveness of exercise interventions for specific cancer patients Coordination: Prof dr H Brug Dr L Buffart Dr C Paw
15 A-CaRe Study 1. Study 2. Study 3. Study 4. Exercise after Exercise during Exercise after Exercise in chemotherapy chemotherapy SCT childhood cancer
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17 Personal Health Record and Supportive Care Plan Webportal for care provider Aggregated (group) Health record and care plan
18 Personal Health Record and Supportive Care Plan Webportal for care provider Aggregated (group) Health record and care plan
19 Personal Health Record and Supportive Care Plan Webportal for care provider Aggregated (group) Health record and care plan
20 Personal Health Record and Supportive Care Plan Webportal for care provider Aggregated (group) Health record and care plan
21 Possible international research cooperation Further development of (stepped) care programmes targeting fatigue, insomnia, sexuality, pain, return to work, nutrition, fear of recurrence, lifestyle, etc. A-CaRe: effectiveness of exercise programs The OncoCompass: a web-based platform to innovate disease management in cancer patients
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