How to share information with cancer patients in a patientcentered

Transcription

1 How to share information with cancer patients in a patientcentered way Dr. med. Krebsinformationsdienst KID Deutsches Krebsforschungszentrum Heidelberg

2 Seite 2 Required and desired: Information, Communication, Support Cancer What is this? Where could I get reliable information? Is cancer contagious? Could my cancer have mental causes? What can I do myself? How can I protect my family? Where do I find competent contact persons? Which treatment is best for me?? Will I be cured? How can I talk with my family? What are the side effects of treatment?

3 Seite 3 Looking for orientation Little knowledge about health information quality Information overload The diagnosis cancer causes fear Providers of infomation with hidden agenda In Germany, app persons contract cancer each year* Uneven quality of information Contradictory information Guidance required * Estimation RKI for 2014 German legislation: Strengthening of patients rights on appropriate information

4 Seite 4 Information and quality of life in cancer patients l Systematic review of 25 studies l Results: higher HRQoL, less depression / anxiety in patients with fulfilled information needs l In intervention studies no benefit by additional information (general information, brochures, CDROM, audiotapes) Explanation: Interventions too short, no additional benefit l Conclusion: Quality of information matters! Optimal: demand-oriented information which is of high personal relevance for the patient

5 Seite 5 Information sources KID user survey (n = 3,658) Patients Relatives Public Patienten Angehörige Interessierte Bürger Facharzt Specialist Hausarzt Family doctor Internet Internet Brochures Broschüren/Ratgeber Relatives Angehörige Printmedia Printmedien TV Support groups Selbsthilfegruppe 0% 20% 40% 60% 80% 100% Population-based survey (n = 2,247) l Internet most relevant for persons < 30 years l Physicians more relevant for persons > 30 l Higher education active search l Lower education random uptake l Physician as the primary information source l In average, 3 to 4 other information sources l Increasing significance of the internet

6 Seite 6 The German Cancer Information Service KID Basic principles Up to date, evidence-based information Neutral and independent Comprehensive quality management Client-centered approach Wide spectrum of topics Several information channels (telephone, , internet, facebook, brochures) > inquiries answered in 2013 Target groups Patients and relatives Interested public Health professionals

7 Seite 7 Aims of KID l Provision of information on cancer, its causes, appropriate prevention, options of early detection, treatment and life with cancer l Empowerment of patients advancement of dialogue, support of the relationship between doctor and patient l Improvement of the individual patient-centered care sciencebased information on options and alternatives l Networking of patients and relatives with all suppliers of infomation, councelling, help and benefits of the health system l Feed back - through health services research l Advancement of quality development of quality-proved ways of information delivery on cancer

8 Seite 8 Cancer information via telephone Chances l Anonymity l Easily accessible l Evidence-based information on cancer-related topics individually tailored to the caller s needs Limitations l Limited knowledge about medical condition of the patient - no medical advice or recommendation l No psychological or psychosocial counselling

9 Seite 9 Telephone service l 7 days per week from 8.00 a.m. to 8.00 p.m. l Comprehensively trained team of physicians l Currently: 27 co-workers in part-time l Main assets: competence, empathy, time l calls answered in 2013 Fragen zu Krebs? Wir sind für Sie da , täglich von 8 bis 20 Uhr krebsinformationsdienst@dkfz.de Krebsinformationsdienst Deutsches Krebsforschungszentrum (DKFZ), Heidelberg Gefördert vom Bundesministerium für Bildung und Forschung

10 Seite 10 Telephone service quality management l Training of new team members l Guidelines, SOPs l Communication skills training l Supervision l Peer coaching Selfassessment Peer Coaching Assessment by 2 peers How to define quality in providing cancer information via phone?

11 Seite 11 Quality of content l Use of appropriate, evidence-based sources of information l Communication of evidence-based knowledge and it s limitations lack of evidence / controversies / open questions / research needed l Relevance for the caller tailored to his/her individual situation

12 Seite 12 Quality of Service l Comprehensiveness l Adequacy with respect to concerns / needs of the caller l Favourable atmosphere Tranquility, concentration, no time pressure l Favourable attitute of the information specialist Empathic Receptive Service-oriented Keeping a professional distance l Language Aligned to caller (tempo, audibility, semantics, diction, tonality, stream of speach) l Dealing with emotions Awareness of emotions, non-verbal messages, and disturbances of communication

13 Seite 13 Phases of a call Phase I Phase II Phase III l Phase I Clarification of the caller s needs l Phase II: Provision of information l Phase III: Summary and closure

14 Seite 14 Phase I Clarification of the caller s needs Phase I Sequence Approach 1. Identify caller s needs Start with open-ended questions Active listening No interruptions 2. Clarify the actual situation 3. Sum up request / concern Ask appropriate questions Communicate that user s concerns are taken seriously 1. How can I help you? 2. In order to answer your question to the point, I need information about Did I understand correctly that you would like to know

15 Seite 15 Phase II Meeting caller s information needs Phase II Sequence 1. Find out what caller knows already 2. Transition to providing information Approach Ask what information was given previously Respect for caller s attitude, without adopting it Initiate giving information Assess caller s intake capacity in the specific situation and how information should be tailored to his needs 1. To avoid giving you information that you may know already: What information about this have you got already? 2. Would you like me to tell you now what information we ve got about this question? Should I explain first the background story?

16 Seite 16 Phase II Meeting caller s information needs Phase II Sequence 1. Providing information Approach Align information to caller s questions Small information packets. Encourage questions Check back to make sure caller has understood. Offer additional support services. Explain pauses caused by search for information. Pause to allow for more questions. 2. Clarification Revise incorrect/not applicable information Clarify own role Build a bridge to physician 1. If you have questions in between... anytime. I would like to point out that 2. It may be helpful to discuss this information with your doctor.

17 Seite 17 Phase III Summary and Closure Phase III Sequence Approach 1. Summary Summarize the information that was provided 2. Confirmation Ask if caller s needs were met. If needs obviously were not met: address this fact. 3. Closure of the call Offer to call again 1. I would like to summarize the main issues that we ve discussed. 2. Have we discussed everything that you needed to know? But maybe our conversation could show you a way 3. If you have more questions at a later time, feel free to call again.

18 Seite 18 Challenging situations Caller is 1. Reproachful You can t help me either Approach Take caller seriously Demonstrate respect/ readiness to respond 2. Knows it all Acknowledge caller s advanced information 3. Talkative Patience Listening Focus on caller s concern 1. I m sorry that the information you got before hasn t helped you. 2. I see that you informed yourself intensely Let s compare the information we ve got. 3. May I interrupt you for a moment to see if I understand your concern right?

19 Seite 19 Challenging situations Caller is Approach 1. Desperate Demonstrate empathy Find a realistic approach for help Show possible options 2. Resigned-pessimistic Demonstrate understanding a) situation is hopeless Listen / encourage to talk if b) try to find out caller s subjective b) subjective feeling perception 3. Anxious, worried What triggered this personal experience? 1. Would it be helpful for you if 2. This situation must be very stressful for you... What made you see it this way? 3. I notice that you are worried... Possibly point out available support services but remain at information level

20 Seite 20 Challenging situations Caller is Approach 1. Challenging, demanding Demonstrate that request/demand has been understood Show understanding Set boundaries and explain general conditions 2. Impulsive, erratic Structure, summarize 3. Very frequent user Address recurrence calls directly Communicate the issue within the team 1. I gladly tell you what information we ve got on this. 2. Let s go over your questions one by one. 3. We ve got the impression that we aren t able to help you sufficiently. We therefore would like to suggest that you contact

21 Seite 21 Cancer patients need information for l Realistic understanding of disease and situation l Perception of prognosis l Comprehension of test results and treatment l Consultations with physicians and caretakers l Search for additional support l Coping with the disease Participation in decision-making in view of individual preferences and values

22 Seite 22 Questions about cancer? We are here for you! Phone: ( , free of charge)