Closer to Home: The burden of out-of-pocket expenses on cancer patients in Newfoundland and Labrador

1. Closer to Home: The burden of out-of-pocket expenses on cancer patients in Newfoundland and Labrador Maria Mathews, PhD Division of Community Health Memorial University of Newfoundland

2. Background Canada Health Act Accessible: first dollar coverage Cost of medically necessary care Provided in hospitals Provided in doctors clinics Does not cover care related expenses

3. Background How much do cancer patients pay out-of-pocket for care? What are urban rural differences? How do these costs affect treatment decisions? How does NL travel policy compare to rest of Canada?

4. Project overview Exploratory, descriptive study Four components Patient survey Cancer registry data Key informant interviews with providers Medical travel policies/programs Approved by HIC and NCTRF research management board

5. Methods: patient survey Sept 2002 and June 2003 we surveyed 484 patients 19+ years; breast, lung, colorectal or prostate cancer; seeing an oncologist at cancer clinic; residents of NL; spoke English Recruited at cancer clinics across province First approached by clinic staff, interviewed by RA Survey nature of the visit, cancer treatment, home community, type of visit, travel and lodging arrangements, socio-demographic characteristics, and expenses for the patient and their escorts Rate importance of various factors in decisions about care

6. Methods: registry data 1997/98-1999/00 age sex home community diagnosis treatment type clinic

7. Methods: provider interviews Interviewed 21 care providers between April and August 2003 in person or over the phone; recorded and transcribed; 30-60 minutes Questions Their role in patient care, how they describe cancer treatment options to patients; types of financial concerns that affect patient treatment decisions; how these financial concerns influence treatment decisions Analysis independently read transcripts to to identify key words and emerging themes developed a coding template; data coded with NUD*IST

8. Methods: travel subsidy programs Compared government travel programs across Canada contacted provincial & federal government amount, deductibles eligibility requirements how to access to the fund

9. Nature of out-of-pocket costs Drugs Medical supplies Home care Nutritional supplements Prostheses & wigs Travel & lodging Meals Escort�s costs Child/elder care Telephone Loss of income

10. I saw a couple last week; they had two small children at home. They had to pay somebody to come and provide childcare. They're crying every night right, and it's all these extra telephone calls. So they have all those extra expenses that you don't anticipate in addition to the transportation, accommodation and meals. travel, lodging, meals, drugs, prostheses, wigs, medical supplies, home care, nutritional supplements, child or elder care, telephone Escort costs Loss of income travel, lodging, meals, drugs, prostheses, wigs, medical supplies, home care, nutritional supplements, child or elder care, telephone Escort costs Loss of income

11. Out-of-pocket costs for travel and lodging/visit

12. Costs by visit type

13. Length of visit and costs

14. Urban vs. rural travel and lodging costs

15. What influences patients� decisions

16. Out-of-pocket drug costs the drugs or the whole chemotherapy agents now, is nothing for it to cost $1000 a month, $1500 a month ... I had a gentleman the other day who had Blue Cross but his 20% coverage was $680 a month.

17. Patient responses: not take medications We have actually had people who can't afford some of the more expensive newer anti-nausea drugs and they've actually decided that they're not going to take them� they decide to go with the older less expensive anti-nausea drugs. And they're not always quite as effective.

18. They know if they're going to take that painkiller every four hours, well that's going to be six at the top of the day. If they can get away with three you know through a bit of suffering or what have you, then obviously, they will take half the medication � We've seen patients who reduced the dosage themselves to try stretch it a little bit longer� Instead of taking it twice a day, they've taken it once a day. Patient responses: ration drugs

19. Patient responses: choose in-patient care She said, "No, I'm not going home, I'll stay here". She was 40 years old and she was dying and she said "No, I'm not going home because if I go home, my family has to purchase the oxygen, I have to buy the anti-emetics which are $25 a pill � No, I will stay in here and I will use the hospital's oxygen and I'll take their pills".

20. Patient responses: choose radical treatment So if it was their decision as to mastectomy versus lumpectomy and radiotherapy, they or I know a number of women who opted for the mastectomy because the time and the finances involved and no family in there� � Definitely the farther away from St. John's, the higher the mastectomy rate. Like Labrador, it's true, everybody gets them.

21. Patient responses: stretch out visits they probably don't go to the follow-up appointments that they should go to because of the expense involved or they would choose to be followed up less frequently

22. Patient responses: continue to work �when you are working in a fish plant or you're a plant worker, you do not have any sick leave. You take a day off that's a day's pay gone � you might take a couple of days off because you're too miserable to stand up, but then you got to go back to work if you expect to have any income for the rest of that year.

23. Provider responses: patch together funding �what we are doing is really looking at a variety of programs and trying to tap into as many programs as we can possibly can to put together a package that will help people get here and sometimes that can be very complicated�

24. Provider responses: change drug prescriptions It depends on whether or not if we'll have to get them compassionate release drugs if they don't have a drug plan. Sometimes it depends; we'll change our entire chemo regiment based on geography and finances. we can try to come up with a comparable treatment which will be covered�

25. Provider responses: change treatment if a patient is scheduled for his treatment on a Monday, we will usually try to double up their treatments the week before so that they can finish on a Friday, these out of town patients.

26. it's the same as a patient coming in and saying, "I only have two weeks of annual leave. I can't afford to take any more than that off�� There may be a treatment protocol that the oncologist can come up with that is pretty well the same as a longer treatment and he thinks it outweighs, if the financial part of it is weighing heavy, he may go with that.

27. Provider responses: admit patients to hospital We've have had patients that would have it into the hospital because they can't afford medications. We've admitted patients to the hospital because family members can't take time off to look after them at home from their jobs. We certainly have admitted patients if they are not able to afford the rental of our equipment at home.

28. Provider responses: change appointment times We said, "okay, find out in those areas what time the taxis and the buses would get into say Grand Falls from where ever they're coming from say Twillingate, Gander, Bay D'Espoir and so on. And therefore to set up the appointment to coincide with those times. For example, if you're going to have a clinic in Grand Falls, you would not send an appointment out to somebody in St. Albans for 9:00.

29. Provider responses: coordinate appointments If they're coming from really far away and the type surgery would be an option for treatment then they would try and coincide the appointment visit with their surgical date so they don't have to make the extra trip. � we will try and arrange to have investigations done in a community close to them and then arrive at the date of admission so they don't have to go back home

30. Provider responses: schedule visits at regional clinics But we do try and encourage them to come to their appointments and if they can't, we do have peripheral clinics I think he finished like in March or April and he wanted to see him in the next month, but like this man � can�t afford to travel back to St. John's so he opted to see him [his doctor] in Corner Brook. But you know this doctor only travels to Corner Brook on an intermittent basis. Now he's waiting until July for his appointment.

31. Provider responses: change follow-up we can follow for a little while and if we don't see any kind of disease coming back, then maybe we'll let you be followed by somebody closer to home. So if the patient is having difficulty coming back and forth, we can minimize the trips back and forth here if we can keep the surgeon and family doctor involved.

32. How needs are assessed Formal assessment varies Patient survey/assessment tool Often in relation to drugs At initial visit Poor management of symptoms Informal conversations, observations Patients are embarrassed, unaware of resources

33. How patients pay 70.0% monthly income 57.2% personal savings 20.0% friends & family 12.6% insurance (including DVA) 6.2% social services 6.0% Medical Travel Assistance Program 4.3% RRSPs 3.7% fundraisers, loans

34. Travel subsidy programs in Canada No direct patient subsidy AB, NS, NB, BC Subsidize travel only SK, MB, ON Subsidize travel, lodging & meals NL, QC, PEI, YK, NWT, NT Federal programs Charities and private companies

35. NL Medical Transportation Assistance Program 50% of eligible costs after $500 deductible Air travel only Stays away from home for a minimum of 31 days Exceptions made on a case by case basis Patients with high expenses Drive and stay in another region for 14+ days

36. Out-of-pocket costs affect quality Diminish patient quality of life Added stress and anxiety Away from friends and families Alter quality of care Alter treatment protocols Poorer symptom control Impact on outcomes

37. Recommendations Provide cancer care closer to home Expand criteria for Medical Transportation Assistance Program Provide patients with information about costs Assess patient needs Expand provincial drug coverage Research costs over episode of care

38. Limitations & next steps Four most common cancers only Low number of people from St. John�s and on social assistance Examine costs for one year Link to outcomes (survival) Drug policies

39. Provincial drug programs Provincial variation in coverage Supportive drugs High cost of new medications New oral chemotherapy agents If a patient get their chemotherapy by intravenous, it's automatically covered. But if they switch to a medication by mouth, they automatically have to pay for it themselves

40. Acknowledgements Funded by the CIHR, Newfoundland & Labrador Centre for Applied Health Research, Canadian Breast Cancer Foundation (Atlantic Chapter) Thanks to our participants! Canadian Cancer Society (NL Division), Newfoundland Cancer Treatment & Research Foundation Drs. Roy West and Sharon Buehler Megan Hayes, Alison Edwards, Julie Wells, Erin Mayo, Andy O�Keefe, John Cavanagh, Lorraine Burrage, Sarah Lenihan, Nadean Caines, Sherry Hunt

41. Summary reports:www.med.mun.ca/comhealth/