Monitoring quality of life in clinical practice and innovating supportive care

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1 Monitoring quality of life in clinical practice and innovating supportive care Prof dr IM Verdonck-de Leeuw VU University Medical Center, Otolaryngology / Head & Neck Surgery VU University, Dept Clinical Psychology

2 Santé et Qualité de vie WHO: Organisation Mondiale de la Santé: La santé est un état de bien-être physique, mental et social, et non pas seulement l absence de maladie ou de handicap. National Cancer Institute USA: La recherche scientifique de qualité de vie etudie et mesure les différents aspects du bien-être d un individu et de sa capacité de réaliser les activités de la vie quotidienne. European Organisation for Research and Treatment of Cancer (EORTC): Le concept de la qualité de vie couvre les dimensions importantes de la vie, comme les symptomes liés à la maladie et au traitement, et aussi le fonctionnement physique, mental et social.

3 Recherche scientifique La recherche en matière de qualité de vie des patients atteints d un cancer a debuté il y a plus de 40 ans. En 1980, le Groupe Qualité de Vie a été créé à Bruxelles pour donner des conseils à l organisation EORTC. L objectif général des évaluations de la qualité de vie dans les recherches scientifiques visant les nouveaux traitements, est de mesurer le bien-être de groupes de patients. La qualité de vie est associée à la survie. Mesurer le bien-être d un patient individuel peut faciliter la communication entre le patient et ses médecins.

4 Overview presentation Monitoring quality of life in clinical practice: OncoQuest Innovating supportive care Stepped care targeting anxiety and depression Empowering patients: OncoKompas 2.0

5 Issues and controversies What are the key challenges for patients living with and beyond cancer? Monitoring HRQOL in clinical practice improves communication, but is this enough? Screening for psychological distress: an international debate. Patient empowerment: Is this something patients want, and something clinicians will accept? What can we learn from the international community?

6 Supportive Care Framework in cancer Fitch M, Supportive care framework CONJ, 2008

7 Percentages of patients who express a need for supportive care. Panel survey (n=212) physical psychological social life questions lifestyle Preferred type of supportive care: individual professional counseling 48-62% self-help without support 14-28% individualized online coaching program 17-25% care in groups with professional counseling 17-21%. F. Jansen, C.F. van Uden-Kraan, V. van Zwieten, B.I. Witte, C.R. Leemans, I.M. Verdonck-de Leeuw. Cancer survivors perceived need for supportive care and their attitude towards self-management and ehealth (in press)

8 Monitoring QOL in practice: OncoQuest

9 OncoQuest: Quality of Life Profile HADS EORTC QLQ C30 generic EORTC QLQ tumor specific

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11 Care coordinator!!

12 Experiences OncoQuest since 2006 (HNC patients) Over times completed Participants found the technology easy to use (96%) and not burdensome (98%) The majority (75%) find completing the questionnaires meaningful but think there are topics missing (81%) Average of 9 minutes to complete questionnaires Approximately 30% of all patients that visit our outpatient clinic make use of OncoQuest Some patients want an online system

13 Results of a mixed method study 2013 During 5 months (2013), HNC patients who visited the outpatient clinic were monitored. 152 used OncoQuest of whom 117 consulted the nurse (77%). Duration consult: 10 minutes (SD 5,5 minutes; range 2-30 minutes) 77% would recommend other patients to make use of OncoQuest / consultation with nurse

14 Results of a mixed method study 2013 Most frequently discussed issues were: Oral dysfunction (dry mouth, trismus, pain) Fatigue and insomnia Anxiety and depression Difficulty eating Problems with smell and taste Problems with speech

15 Some quotes You can ask the medical specialist,.about the mental issues. He also provides advice of course, but he is not, he is for something else. So I mean really, that part can better be addressed by the nurse. What I like is that the test I have done that I can talk to the nurse about it immediately. For patients who need it, this is a great service, it gives a safe feeling we keep an eye on you, we want to support you, also after treatment. For myself this is not necessary but for other people who need it, this is very nice.

16 Psychological care Effective in cancer patients with depressive symptoms Hart SL, et al. Meta-analysis of efficacy of interventions for elevated depressive symptoms in adults diagnosed with cancer. J Natl Cancer Inst 2012;104(13): Referral rate is low. Carlson LE, et al. High levels of untreated distress and fatigue in cancer patients. Br J Cancer 2004;90(12): Verdonck-de Leeuw IM,et al. Computerized prospective screening for high levels of emotional distress in head and neck cancer patients and referral rate to psychosocial care. Oral Oncol 2009;45(10):e129-e133. Routine screening may facilitate adequate referral.

17 Routine screening via OncoQuest: beneficial? During 29 months ( ), HNC patients who used OncoQuest were screened for distress. Patients with distress (HADS-A > 7, HADS-D > 7 or HADS total > 14) were telephone based interviewed on receipt of psychiatric or psychological treatment. Definition of beneficial: percentage of identifying patients with untreated distress > 50%.

18 Routine screening for distress During the study period of 29 months: OncoQuest was used 2365 times by 802 individual patients Distress in 27.3% of these patients (n=219). (17 patients excluded or could not be reached) 39/202 received psychiatric or psychological treatment (19%).

19 Conclusions OncoQuest is beneficial: It helps to identify patients with psychological distress who do not yet receive treatment (81%) Integrate screening into medical and supportive care!!!

20 Innovating supportive care:

21 Efficacy of stepped care Randomised controllled trial on the efficacy of (online) guided self-help targeting head and neck cancer (HNC) survivors with psychological distress. Krebber AM, Smit HFE, Witte BI, de Bree R, Cuijpers P, van Straten A, Eeckhout GM, Beekman ATF, Leemans CR, Verdonck-de Leeuw IM Cost-evaluation of stepped care targeting psychological distress in head and neck cancer survivors. Submitted

22 Study sample 80 HNC patients at least 1 month after treatment, with distress: HADS-A > 7, HADS-D > 7 or HADS total > 14, via OncoQuest

23 Intervention group Step 1 Watchful waiting (2 weeks) Step 2 Guided self-help Head lines (5 weeks) Care as usual group Social work Psychologist/psychiatrist No care

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25 Outcome measures Primary outcome measure Distress: HADS Secundary outcome measures Quality of life: EORTC QLQ-C30, QLQ-HN35 Patient satisfaction with care EORTC PATSAT Assessments: before, post and 3 months after intervention

26 course of HADS-total (p<.005) * p = ES 0.82 * p = ES 0.72

27 the OncoKompas 2.0 : a self-management tool to monitor quality of life and find the optimal supportive care Personal health record Structured monitoring quality of life Decision support algorithms Database with (evidence based) supportive care options Intervention mapping / stepped care programs 27

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33 Oncologie specifiek Online cursus Individuele hulp Hulp in groepsverband Professionele begeleiding door een psycholoog Wanneer u te horen krijgt dat u kanker heeft, komt er een heleboel op u af, waardoor het kan zijn dat er ook psychische klachten ontstaan. Een psycholoog kan u hierbij helpen. Selecteer >. Professionele begeleiding door een maatschappelijk werker De maatschappelijk werker biedt ondersteuning aan patiënten bij het verwerken van een ziekteproces, in samenhang met de sociale omgeving. Selecteer > Creatieve expressie of therapie Creatieve expressie of creatieve therapie kan u helpen bij de verwerking van de emoties rondom het ziekteproces. Selecteer > Bezoek aan een inloophuis Het inloophuis is een plaats waar alle mensen die met kanker te maken hebben elkaar kunnen ontmoeten. Voor steun, voorlichting of om even hun verhaal kwijt te kunnen. Selecteer > 33

34 Oncologie specifiek Online cursus Individuele hulp Hulp in groepsverband. Professionele begeleiding door een psycholoog Wanneer u te horen krijgt dat u kanker heeft, komt er een heleboel op u af, waardoor het kan zijn dat er ook psychische klachten ontstaan. Een psycholoog kan u hierbij helpen. Selecteer > Wanneer u te horen krijgt dat u kanker heeft, komt er een heleboel op u af. U krijgt nogal wat voor uw kiezen, waardoor het kan zijn dat er ook psychische klachten of problemen ontstaan, zoals somberheid, in de put zitten, boosheid of angst. Het is mogelijk dat het u moeite kost de behandeling en de eventuele gevolgen van de ziekte te verwerken. De gevolgen kunnen betrekking hebben op uw stemming, uw zelfbeeld, seksualiteit, lichamelijke prestaties en het (veranderde) uiterlijk. Een psycholoog kan u ondersteuning en begeleiding bieden door samen met u stil te staan bij alles wat u is overkomen en u helpen de behandeling en de eventuele gevolgen van de ziekte te verwerken. In een aantal gesprekken worden uw problemen in kaart gebracht en wordt hulp geboden om uw klachten te verminderen. Sommige psychologen zijn gespecialiseerd in de psychologische behandeling en psychosociale begeleiding van mensen met kanker en hun naasten. Ook vanuit de psycho-oncologische centra werken vaak psychologen en diverse therapeuten aan de psycho-sociale begeleiding en behandeling van de patiënten. Activiteiten Mentaal Vitaal Met Mentaal Vitaal kunt u weerbaarder worden of blijven voor psychische klachten. Op de website vindt u informatie over verschillende onderwerpen die met uw mentale conditie samenhangen. Daarnaast kunt u tips ontvangen en delen, en zelf aan de slag gaan met oefeningen (bijv. ontspanningsoefeningen) om psychische klachten te voorkomen. Wanneer u al last heeft van psychische klachten biedt Mentaal Vitaal een aantal programma s aan, waaruit u zelf het programma kunt selecteren dat het beste bij u past om aan deze klachten te werken. U kunt direct beginnen met het verbeteren van uw mentale conditie! 34

35 sociaal Lifestyle Physical Psychological Social Existential issues Smoking Alcohol Exercise Nutrition BMI Stress Pain Sexuality Sleep Fatigue Body image Diarrrea Constipation Loss appetite Nausea Lymphe edema Daily life Hearing Anxiety Depression Memory & concentration Social life Loneliness Relations Childres Finances Work Communication with care providers Meaning Religion Future perspective

36 Head and neck cancer Oral function Shoulder function Swallowing Speech Lymph edema Loss of taste or smell Colorectal cancer Bladder problems Genetics Stoma Fibrosis Faeces Bloating Breast cancer Hormonal therapy Menopause Body image Child wish Genetics Prosthesis Lymph edema Fibrosis Arm-shoulder Breast reconstruction

37 Development cycle OncoKompas Development cycle Studies Effect evaluation Designing program Needs assessment among patients and care providers User performance and satisfaction Cognitive walkthrough by experts Usability testing Feasibility study (Cost)effectiveness Implementation study

38 Development cycle OncoKompas (1) Online survey among cancer patients (N=339) Qualitative needs assessment HNC and BC patients (2 x N=15) Qualitative needs assessment multidisciplinary oncology team (N=11) OncoKompas prototype (OncoKompas 0.1) Usability study with focus on technology (using Morae) (N=9) Developing content with multi-disciplinary team of experts (care professionals and patients) OncoKompas

39 Development cycle OncoKompas (2) Cognitive walkthrough care professionals (N=20) Usability study among HNC patients with focus on content and service (using Morae) (N=11) OncoKompas (OncoKompas 1.1) Feasibility study among 60 HNC patients in 3 UMCs, VUmc Amsterdam, LUMC Leiden, UMC Maastricht Including qualitative process evaluation. Oncokompas 2.0 january 2015 Cost-effectiveness study Implementation study

40 Head Matters: Guided self-help exercises during radiotherapy to prevent speech and swallowing problems Ingrid Cnossen

41 Moving on without a voice box: selfmanagement portal for larygectomized patients

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43 the WHO Chronic Care Model Patiënt Selfmanagement (empowerment) Health care system Organisation of supportive care (care coordinator) Informed and active patient Prepared and pro-active team of care providers Improved outcomes winning team!

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