Development and pilot testing of a comprehensive support package for bowel cancer survivors

Transcription

1 Development and pilot testing of a comprehensive support package for bowel cancer survivors Michael Jefford, Carl Baravelli, Megan Rogers, Penelope Schofield, Kerryann Lotfi-Jam, Meinir Krishnasamy, Carmel Pezaro, Suzi Grogan, Sanchia Aranda, Donna Milne, Dorothy King, Beryl Shaw Nursing and Supportive Care Research Peter MacCallum Cancer Centre

2 Key points There are a large number of bowel cancer survivors Survivors may have significant unmet needs at treatment completion Survivors need information and a clear strategy regarding follow up We have developed and tested a comprehensive support package to better support people at this transition

3 Bowel cancer is the most common cancer affecting both men and women in Australia (excluding non melanoma skin cancers)

4 There are over bowel cancer survivors in Australia

5 Bowel cancer incidence and mortality trends (Victoria) Canstat: Cancer in Victoria The Cancer Council Victoria Epidemiology Centre 2009

6 Potential issues after completing treatment for (any) cancer Varied reactions to finishing treatment Fear of recurrence Ongoing treatment side effects Relationship issues Work / financial issues Impact on family Late and longterm effects of treatment Distress, anxiety, depression

7 Potential issues after completing treatment for bowel cancer Risk of recurrence Risk of second cancer Surgical issues (bowel obstruction, abdominal wall hernia, altered bowel function) Rectal cancer faecal, bladder, sexual dysfunction Chemotherapy peripheral neuropathy Social, occupational, relationship issues

8 US Institute of Medicine report (IOM report) From Cancer Patient to Cancer Survivor: Lost in Transition Argued that the post treatment phase is a distinct phase that requires increased attention by clinicians 17 minute video on YouTube

9 US Institute of Medicine report the transition from active treatment to post-treatment care is critical to longterm health. If care is not planned and coordinated, cancer survivors are left without knowledge of their heightened risks and a follow-up plan of action.

10 IOM report Four components of quality survivorship care 1. prevention of recurrent and new cancers 2. surveillance for cancer recurrence as well as for medical and psychosocial late effects 3. strategies to deal with the broad consequences of cancer and its treatment 4. coordination between specialists and primary care providers

11 Current emphasis of care Four components of quality survivorship care 1. prevention of recurrent and new cancers 2. surveillance for cancer recurrence as well as for medical and psychosocial late effects 3. strategies to deal with the broad consequences of cancer and its treatment 4. coordination between specialists and primary care providers

12 Is this typical of current follow up?

13 Survivorship care plans (SCP) A key component of optimal survivorship care, according to the IOM report The SCP is a summary of: Cancer diagnosis and treatments Plans for follow up Current medical, psychosocial, practical issues, and a plan for management Potential future issues and a plan for management Ideally discussed with someone toward the end of potentially-curative treatment(s)

14 Follow up guidelines focus only on strategies to detect recurrence or possible second cancer

15 ASCO recommendations for bowel cancer surveillance

16 Strategies to better support cancer survivors

17 Our previous work Understanding the needs of Australian cancer survivors J Cancer Surviv Mar;2(1): Epub 2008 Jan 25

18 Our previous work Developed information materials for cancer survivors Booklet DVD

19 Our previous work Developed information materials for cancer survivors J Cancer Surviv Sep;1(3):226-36

20 Our previous work Survivorship care plans J Cancer Surviv Jun;3(2): Epub 2009 May 5

21 Our previous work Survivorship care plans General support for the notion of a SCP Support for core content areas Support for information for, and involvement of GPs Uncertainties regarding: (a) who coordinates follow up; (b) who might complete / discuss the SCP; (c) content of the SCP J Cancer Surviv Jun;3(2): Epub 2009 May 5

22 Our previous work Improved GP involvement J Clin Oncol May 10;26(14):

23 Principles behind the current intervention (SurvivorCare) UK Medical Research Council key principles 1. Promotion of patient involvement and engagement 2. Tailoring to specific needs of individual patients 3. Evidence-based strategies to promote well-being and reduce treatment sequelae

24 SurvivorCare intervention 1. Survivorship educational materials (DVD, booklet, question prompt list (QPL) 2 weeks prior to completing treatment) 2. Tailored SCP for patient, GP, specialists 3. Nurse-led end of treatment consultation discuss concerns from QPL, discuss SCP, screen for distress, self-care strategies 4. Nurse-led telephone-based follow up 1, 3 and 7 weeks after the end of treatment session

25 SurvivorCare intervention Provision of DVD, booklet and question prompt list (~ 2 weeks prior to completing treatments) End of treatment session (deal with issues from QOL, introduce and discuss SCP, health promotional strategies, transition to GP. ~ 1 hour, face to face) Telephone follow up (1, 3 and 7 weeks after end of treatment session review issues, transition to GP)

26 The intervention is designed to: 1. Be patient-centred, by eliciting concerns 2. Provide holistic care coordination by a specialist clinical nurse consultant 3. Provide instruction in evidence-based self care strategies, stress reduction 4. Provide tailored information to patients and significant others 5. Provide appropriate referrals 6. Be cost efficient

27 Pilot testing of SurvivorCare Aim To confirm appropriateness, acceptability and clinical feasibility To refine the intervention based on participant feedback (survivors / nurse coordinator)

28 Approached, n=12 Pilot study - participant flow chart Declined, n = 2 Too anxious, n = 1 Not interested, n = 1 Withdrawn, n = 1 Consented, n = 10 Baseline q, n =10 Consultation, n = 10 Satisfaction interview,n=7* n=5 in person, n=5 over phone Follow up call 1, n = 9 Lost to follow up, n = 1 Follow up q, n = 8 * - High consent rate Follow up call 2, n = 7 * - High retention Follow up call 3, n = 7 * Satisfaction interview, n=7*

29 Approached, n=12 Pilot study - participant flow chart Declined, n = 2 Too anxious, n = 1 Not interested, n = 1 Withdrawn, n = 1 Consented, n = 10 Baseline q, n =10 Consultation, n = 10 Satisfaction interview,n=7* n=5 in person, n=5 over phone Follow up call 1, n = 9 Lost to follow up, n = 1 Follow up q, n = 8 * Follow up call 2, n = 7 * Follow up call 3, n = 7 * Satisfaction interview, n=7*

30 Participants Demographic characteristics n Gender Male 5 Female 5 Age Average 55 Range Marital status Married 4 Separated/divorced 2 Widowed 2 Never married 2 Education University/TAFE 5 Finished high school 1 Some high school 3 Unanswered 1 Employment Full time 4 Part time 2 Self-employed 1 Retired 1 Pensioner 1 Not employed 1 Location Metropolitan 7 Rural 3 Clinical characteristics Date of diagnosis Time since treatment completion month or less 6 3 months 1 5 months 1 6 months 1 8 months 1 Cancer site Colon 3 Rectal 7 Stage A 3 3B 3 3C 2 Treatment type Surgery+chemo+RT 7 Surgery+chemo 2 Surg only 1 n

31 Interview 1 (post end of treatment session) How did you find the experience? All reported positive experience Nurse easy to talk to, thorough What did you find useful? All reported it was very useful Address areas where help was needed, reinforced, clarified, ask questions they hadn t asked doctors

32 Interview 1 (post end of treatment session) Suggestions regarding additional topics Most were happy with the content Specific queries (2) / websites (1) / info about side effects should ve been given earlier (1) / talk to others in similar situation (1) / practical aspects about coping (1) Highly relevant Time of consultation appropriate

33 Interview 2 (after 3 phone follow up calls) All reported it was a positive experience All found the calls very useful Again, some information would have been better received earlier All felt the topics were very relevant All happy with the timing of calls

34 Conclusions The SurvivorCare package is Highly acceptable Relevant Appropriate Perceived to be useful Able to be delivered Only minor modifications required Training / resource manuals complete

35 Future plans To evaluate the impact of this posttreatment survivorship intervention in a multi centre randomised controlled trial Endpoints psychological distress, unmet needs, quality of life

36 Thank you Funding from Peter MacCallum Cancer Foundation and the Department of Nursing and Supportive Care Research A/Prof Michael Jefford