Cancer Survivor Programs In Other Countries

Following the establishment of registries to help quantify the actual number of their populations identified with cancer, many countries have begun to develop comprehensive cancer care centers (e.g., Sweden, France, Germany), however, as previously mentioned most continue to be focused on the diagnosis and treatment of the condition, with some just beginning to broaden their focus to include cancer survivors in their care networks.

As noted earlier, the health care systems in Europe, Canada, and Australia have been reevaluating their delivery systems to improve national health programs. The most significant strides in the area of cancer survivorship programs have come from the United Kingdom, basing their restructuring on clinical audits.13 This reprogramming has shown a shift from a more traditional unidiscipline delivery system of care (e.g., Medicine, Surgery, or Obstetrics, and Gynecology) to a disease- and organ-based multidisciplinary delivery system. Most notably, has been the development and implementation of The Expert Patient Program. This program has also been used in Australia, Europe, and the US.

The Expert Patient Program, is based on the Chronic Disease Self-Management Program (CDSMP) developed and researched over the past 20 years by researchers under the direction of Dr. Kate Lorig at the Patient Education Research Center at Stanford University, and also on the work of Dr. Edward Wagner in the primary care setting. The Expert Patient Program trains chronic illness survivors of all types to develop and enhance skills to self-advocate and to manage their care better on a daily basis.40 Beyond the individual patient goals, the program focuses on the broader system of health care and works to improve quality of care, reduce geographic barriers that negatively influence outcomes of care, and to enhance the overall coordination of the care. Whereas this program is not specifically focused on cancer care, it does have applicability to that population.

Another interesting national program in England is called Cancerbackup (British Association of Cancer United Patients—and their families and friends). The description of the program can be found at http://www.Cancerbackup.org.uk. This site is Europe's leading cancer information service, with several thousand pages of current cancer information, practical advice and support for cancer patients, their families and caregivers. Cancerbackup is interested in continually refining its program to ensure it is meeting the needs for whom the site is intended. In general, Cancerbackup has several mechanisms evaluate its programming. It seeks to identify specific groups of individuals (e.g., men, minorities, full-time workers) who do or do not use the service, and the extent to which they use the services. They are interested in finding ways to more fully develop their existing serivces. They are also interested in assessing the effectiveness of various strategies to enhance the number of contacts they receive from the different groups, evaluating how the media effects the numbers of contacts, and making their data available to professionals and the general public to increase awareness of their services.

Table 3 highlights some of their most recent research articles and their findings supporting their defined areas of cancerbackup's research mission. All studies indicate topics for further research in the areas they explored. Furthermore, the organization is interested in having researchers analyze their data to explore the types of information sought by individuals affected by cancer. The organization is sponsoring a proposal competition for interested researchers. They are encouraging the

Table 3. Overview of Outcomes Research Completed by Cancerbackup

Article

Findings

Hardyman, R., Hardy, P., Brodie, J., and Stephens, R. 2005. It's good to talk: Comparison of a telephone helpline and website for cancer information. Patient Education and Counseling 57, 3: 315-320.

Boudioni, M., Mossman,J., Boulton, M., and Hardy, P. 2004. Differences in enquiries to CancerBACUP information service by living arrangements. European Journal of Cancer Care 13, 1: 6-10.

Hardyman, R., and Leydon, G.L. 2003. Letter: Media influence behaviour. British Medical Journal 326: 498.

Boudioni, M., McPherson, K., Moynihan, C., Melia,J., Boulton, M., Leydon, G., and Mossman, J. 2001. Do men with prostate or colorectal cancer seek different information and support from women with cancer? British Journal of Cancer, 85 (5): 641-648.

Brodie, J. 2001. Helplines. Getting through. Health Service Journal, 17 May 2001, pp. 26-27.

Boudioni, M., McPherson, K., Mossman, J., Boulton, M., Jones, A.L., King, J., Wilson, E., and Slevin, M.L. 1999. An analysis of first-time enquirers to the CancerBACUP information service: Variations with cancer site, demographic status and geographical location. British Journal of Cancer 79 (1), 138-145.

This study explored the types of information people sought using telephone helplines and the Internet. The results of the study illuminated the types of health information people seek between the two sources and how the sources could complement each other to benefit survivors.

The study's goal was to address whether an individual was more likely to be able to live alone if they had access to and independent cancer information service. The study was not able to confirm that individuals with cancer were more likely to live alone with access to the information service, but was able to explore some of the differences in use of the service by these individuals.

These researchers examined the impact of a news media

(television and related tabloid newspaper) article the death of a fictional television character of cervical cancer. They examined the number of calls to CancerBACKUP's helpline in the time, finding peaks in the numbers of calls that they received at the breaking of the news of the cancer in the character and at the time of her death.

Although no pattern between men and women was distinguished with this study, the researchers found that among male colorectal cancer patients, employed men were less likely to request site-specific information, and more likely to need emotional support than retired men. Also that labors were more likely to ask for information about specific therapies then nonlabors.

This study looked at the persistence of callers to reach a live voice on a helpline. It found high persistance in those who eventually did get through, and it found that the launching of a related website did not decrease the number of helpline calls.

This was a retrospective comparison of cancer incidence data and,where relevant, population data of first-time users (patients, relatives, and friends) of a the CancerBACUP service. Statistically significant differences were found in the observed and expected sex, age, employment status, socioeconomic class, and geographical location of those calling for the first time. They received much higher than expected calls asking about brain, testis, and breast cancers and non-Hodgkin's lymphoma and calls about bladder, lung, stomach, and colorectal cancers were much lower than expected.

exploration of their data by making a small sample of their data available on their website.

More recently, Cancerbackup has expanded their services to include face-to-face local centers, staffed by cancer nurses, in hospitals throughout the UK. The program is considered successful as it provides direct information and support for approximately 50,000 cancer patients, survivors, and their families through e-mail, phone contact, or letter annually. The website reports 3.7 million pages viewed each month. Specialized oncology nurses provide information and support are, in turn, supported by 200 cancer specialists to ensure the nurses are providing the highest quality information. Cancerbackup is entirely supported by voluntary donations, trusts, corporate sponsorship, special events, publications, and investment income. In 2004, they raised $9,217,700 (US$), spending only $7,349,800 (US$). Their income and assets has steadily grown since program start up in 1999.41

Another national program in the United Kingdom, is CancerSupportUK, directed at all levels of cancer care including the longer-term follow-up survivors require. This program was funded by The Diana, Princess of Wales Memorial Fund Project, and is based at the Royal Marsden National Health Service Trust. Its goal is to establish and maintain information and programs for individuals affected by cancer. They undertook collaboration with local organizations to evaluate how the quality of care and support for people with cancer in the community could be enhanced. Special care was taken to address the needs of those, who for example, may have social or cultural reasons, have found access to services difficult. The organizers hoped to reach out to those with cancer, their family and friends, and professional caregivers who many benefit from local resource information. Currently, there is no research reporting on the effectiveness of their programming.

To meet one of their objectives, CancerSupportUK hosts a website (http://www. cancersupportuk.nhs.uk) that explains the interdisciplinary team of professionals that individuals diagnosed with cancer can expect to see within the UK. The team should be comprised of the full complement of caregivers including general and specialized physicians, radiologists, psychologists, chaplains, social workers, dietitians, occupational and physical therapists, nurses, and speech-language pathologists, as well as complementary and alternative medicine practitioners, for the acute stages, but then the website broadens its role to guide the survivor to integrate into the community and support independent living. These community services are provided by Primary Care Trusts to provide high-quality community health services for people living within a defined local geographical area. The CancerSupportUK website hosts links to many community services, explaining how they may be helpful to those living with cancer. Although the program was established with specific goals to evaluate care and support in the community, reports of any evaluations are not yet available for the general public.

Whereas programs like those in the UK are being implemented data on outcomes need to be collected. Also, these approaches are not always easily translatable for other countries, even in the developed world as researchers in Australia report.42 The multidisciplinary team concept used in the UK where all of the team members come together for face-to-face meetings on a weekly basis would not always work in vast counties like Australia given the great distance between urban and rural communities and the lack of specialists at all locations; 30% of female Australian breast cancer survivors live in remote or rural areas.42 Furthermore, because Australia's health care system is comprised of many different delivery settings, urban and rural, providing a variety of types of care and had a lack of availability of specialists throughout all regions, previously had financial disincentives for multidisciplinary team meetings.43 Therefore, a National Multidisciplinary Care Demonstration Project (NMCDP) was initiated in February 2000 in three multifacility collaborations to explore a more flexible model that could be implemented to accommodate the special circumstances of Australia. The same theme of multidisciplinary care (MDC) core principles, The Principles of Multidisciplinary Care (Table 4) were used in this model as were used in the UK's models: the critical aspects of a team approach, the need for clear and

Table 4. The Principles of Multidisciplinary Care

Principle of care (Team)

• The disciplines represented by the "core" team should minimally include surgery, oncology (radiation and medical oncology), pathology, radiology, and supportive care. The individual woman's general practitioner will be part of her team.

• In order to ensure that the woman has access to the full range of therapeutic options, the "core team" may be expanded or contracted to include services (which may be off site), such as genetics, psychiatry, physiotherapy, and nuclear medicine.

Communication

• A communications framework should be established which supports and ensures interactive participation from all relevant team members at regular and dedicated case conference meetings.

• Multidisciplinary input should be considered for all women with breast cancer; however, not all cases may ultimately necessitate team discussion.

Full therapeutic range

• Geographical remoteness and/or small size of the institution delivering care should not be impediments to the delivery of multidisciplinary care for women with breast cancer.

• The members of the team should support the multidisciplinary approach to care by establishing collaborative working links.

Standards of care

• All clinicians involved in the management of women with breast cancer should practice in accord with guideline recommendations.

• The treatment plan for a woman should consider individual patient circumstances and wishes.

• Discussion and decisions about treatment options should only be considered when all relevant patient results and information are available.

• In areas where the number of new cancers is small, formal collaborative links with larger units/centers should give support and foster expertise in the smaller unit.

• Maintenance of standards of best practice is supported by a number of activities which promote professional development.

Involvement of the woman

• Women with breast cancer should be encouraged to participate as a member of the multidisciplinary team in treatment planning.

Outcome

• The "breast cancer care team" is established and known.

• Referral networks established for noncore team specialist services.

Outcome

• Communication mechanisms are established to facilitate case discussion by all team members.

• A local protocol is established for deciding which cases may not require team discussion.

Outcome

• Systems are established for ensuring that all women have access to all relevant services.

• Systems are established to support collaborative working links between team members.

Outcome

• Local clinician data are consistent with national benchmarks.

• The final treatment plan should be acceptable to the woman.

• Final reports are available to all core team members before treatment planning.

• Systems are established for the exchange of knowledge and expertise between larger and smaller caseload centers.

• Systems are established for the support of professional education activities.

Outcome

• Women are supported to have as much input into their treatment plan as they wish.

Table 4. ( Continued)

Involvement of the woman

Outcome

The woman diagnosed with breast cancer should be fully informed of her treatment options as well as the benefits, risks, and possible complications of treatments offered. Appropriate literature should be offered to assist her in decision making. This information should be made available to the woman in a form that is appropriate to her educational level, language, and culture.

Supportive care is an integral part of multidisciplinary care. Clinicians who treat women with breast cancer should inform them of how to access appropriate support services. The woman with breast cancer should be aware of the ongoing collaboration and communication between members of the multidisciplinary team about her treatment.

All women should be fully informed about all aspects of their treatment choices.

All clinicians involved in the management of women with breast cancer should ensure that women have information about and access to support services.

Women with breast cancer feel that their care is coordinated and not fragmented.

Source: Zorbas et al.42

frequent communication, access to all necessary care, nationally accepted standards of care including coordination of that care, and the involvement of the individual with cancer through active and timely dialogues with team members. Although the program was designed for women with breast cancer, it was acknowledged from the beginning of the program, that the principles could be applied to other cancers as well.44

The NMCDP was implemented to investigate the impact, cost, and willingness of three multifacility sites (called "collaborations") to accept an MDC program for women with breast cancer. Each of the collaborations were allowed to identify MDC strategies that would work within their local environments as long as they were in accordance with the overall Principles of Multidisciplinary Care4 Collaboration 1 was comprised of an urban area and the surrounding rural areas extending to a state border and including three main rural towns. Collaboration 2 was comprised of five sites distributed over a large geographical area of one state. Collaboration 3 included facilities from several regions within one state, also including a major metropolitan city and two large rural centers.

Collaboration 1 chose to use three strategies to implement in their model:

1. Continued development of an existing breast clinic to create a forum; and move MDC fromjust the treatment phases, but to include any point beyond diagnosis.

2. Development of a multidisciplinary clinic in another site and to enhance communications. Implementation of a case conferencing system throughout the region using existing information technology.

3. Coordination of breast care nursing and removal of institutional barriers to promote more uniform practice and continuity of care.

Collaboration 2 chose to implement over 40 strategies. They ranged from very specific, such as creating team letterhead to others that were very general such as enhancing current relationships within its region. Their strategies clustered into four main areas

1. Development of an identifiable multidisciplinary team and to bolster the interaction between the team members by:

• creating and supporting a "team" concept;

• developing and implementing a clinical management pathway to be able to examine interdisciplinary interaction;

• conducting group meetings and team sessions for team building and to decrease fears of losing an individual clinical identity by clinicians; and

• standardizing referral forms and recording outcomes of patient referrals.

2. Instituting regular case conference team meetings, linking nonlocal sites with videoconferencing.

3. Developing or strengthening collaborative relationships across the region by:

• assessing current deficits in service provision;

• creating a directory of off-site services; and

• developing shared-care processes to limit the amount of required patient travel.

4. Ensure all newly diagnosed women have the opportunity to speak with a supportive care team member before treatment decisions are made. This was accomplished through developing specific protocols.

Collaboration 3 chose several strategies that can be placed into three main areas:

1. Identifying a breast care nurse to:

• become a member of the multidisciplinary team and attend case conference meetings, giving feedback to the patient and family of the meeting outcomes;

• promote seamless coordination of care, information, and referrals through the phases of diagnosis, surgery and adjuvant therapy; and

• develop and/or strengthen relationships between the collaborating sites by attending satellite clinics and creating formal linkages with relevant nursing staff.

2. Focus on enhancing communication within the multidisciplinary team by discussing all cases including patients from rural areas in the network.

3. Develop either video or teleconferencing linkages with the rural centers in the networks to allow their participation in multidisciplinary meetings.

The project was evaluated with feedback from the participating clinicians and from the cancer survivors. Collaborations 1 and 2 sought to increase the role of the general practitioners in the MDC meetings, but only Collaboration 1 was successful with their strategies to have consistent involvement of those clinicians. Collaboration 3 reported the highest pre- to post-implementation changes of the collaborations—this collaboration had included a specialist breast care nurse to help coordinate care, and also attempted to create linkages with rural centers. With a psychologist as also attending some of the Collaboration 3 meetings, the evaluation team felt that it was the increased focus on the psychosocial issues that mostly contributed to the overall high program outcomes. Survivors identified the critical function of consistent communication among the team members, particularly noting that some confusion came when the professionals communicated conflicting information to a patient acting as if the professionals themselves were not communicating.

Activity logs and clinical audits were made to follow attendance at team meetings in an attempt to gather some objective data on the clinical care. Itwas reported by the evaluators that the project was too short and had too few women to demonstrate clear clinical outcomes; therefore they did not chose to report them. However, project costs were tracked and reported. These are presented in Tables 5, 6, and 7. The goal of

Table 5. Cost Summary for Collaboration 1 of an Urban Area and the Surrounding Rural Areas Extending to a State Border and Including Three Main Rural Towns

Cost summary for Collaboration 1

Baseline

Start-up

Implementation

Post-implementation

Cost item

(6 months)

(8 months)

(7 months)

(6 months)

A

Staff attendance at

Nil

3, 222.35

25, 614.31

31, 766.79

treatment planning

meetingsa

B

Capital and equipment4

No data

11, 500.00

379.50

0.00

C

Teleconferencingc

No data

0.00

0.00

0.00

D

Meeting organizationd

No data

5, 316.85

4, 652.25

3, 987.64

E

Other meeting-related costse

No data

1, 244.18

1, 307.41

970.63

F

Total cost of education

16,072.29

9, 749.30

15, 439.65

9, 730.51

meetings

G

Breast care nursing

No data

0.00

0.00

4, 049.27

(nonmeeting)f

H

Project manager/

No data

19, 055.73

16, 673.77

14, 291.80

coordinatorg

I

Staff personal timeh

No data

34, 916.00

18, 538.00

15, 548.00

J

Travel and accommodation'

No data

1, 036.02

906.52

777.01

K

Other costs J

No data

4, 407.28

1, 333.89

1, 143.33

L

Total costs per phase

16,072.29

90, 447.71

84, 845.30

82, 264.98

M

Total meeting costs

0.00

21, 283.38

31,953.46

36, 725.06

(A+B+C+D+E)

N

Number of treatment

0

2(1)

21(2)

23(2)

planning meetings

(number of sites)

O

Average staff attendance

0.00

1, 611.17

1, 219.73

1, 381.16

cost per meeting (A/N)

P

Average total cost

0.00

10, 641.69

1,521.59

1, 596.74

per meeting (M/N)

Q

Number of patients

No data

4

49

58

R

Average total meeting

No data

5, 320.85

652.11

633.19

costs per patient

S

Number of cases presented

No data

4

56

67

T

Average staff attendance cost

No data

805.59

457.40

474.13

per case presented (A/S)

U

Average total meeting

No data

5, 320.85

570.60

548.14

cost per case presented (M/S)

cost per case presented (M/S)

Information from log book and supplementary data where specified.

a Baseline calculated from information provided on Baseline costing study sheets.

b From project budget summary: $13,956.74 spent on secretarial wages for entire project. Pro-rated.

c Includes the costs associated with room hire, food, and catering, from logbook data. Catering of $2872.22 from project budget summary pro-rated.

d The breast care nurse salary of $9500 (project budget summary), less breast care nurse meeting attendance (log book). e From project budget summary: $50,021.30 spent on local evaluator wages for entire project. Pro-rated. f Collaboration retrospectively estimated personal time. Costed at appropriate salary rates.

g Log book data ($0) and project budget summary: $619.55 travel costs and $2100 project worker costs. Pro-rated. h From project budget summary: stationery $4001.66 pro-rated equally; advertising ($880.75+706.75), education ($732) and incorporation ($563.34) assumed to occur in start-up.

Table 6. Cost Summary for Collaboration 2 of Five Sites Distributed Over a Large Geographical Area of One State

Cost Summary for Collaboration 2

Table 6. Cost Summary for Collaboration 2 of Five Sites Distributed Over a Large Geographical Area of One State

Cost Summary for Collaboration 2

Baseline

Start-up

Implementation

Post-implementation

Cost item

(6 months)

(8 months)

(7 months)

(6 months)

A

Staff attendance at treatment

15,500.40

15, 488.94

30, 954.72

32, 167.42

planning meetingsa

B

Capital and equipment4

No data

0.00

328.46

281.54

C

Teleconferencingc

No data

938.66

765.06

231.48

D

Meeting organizationd

No data

5, 300.05

4, 694.33

3, 937.18

E

Other meeting-related costse

No data

100.00

0.00

0.00

F

Total cost of education

No data

11, 905.69

4, 897.69

4, 964.09

meetings

G

Breast care nursing

No data

0.00

0.00

0.00

(nonmeeting)f

H

Project manager/

No data

14, 898.55

39, 227.88

33, 703.30

coordinator^

I

Staff personal time*

No data

22, 130.50

9, 800.65

0.00

J

Travel and accommodationi

No data

0.00

1, 753.27

1, 520.80

K

Other costsj

No data

4, 644.81

1, 741.30

1, 492.54

L

Total costs per phase

15, 500.40

75, 407.19

94, 163.36

78, 280.35

M

Total meeting costs

15, 500.40

21, 827.65

36, 742.57

36, 617.62

(A+B+C+D+E)

N

Number of treatment

24

31(3)

59(3)

43(3)

planning meetings

(number of sites)

O

Average staff attendance

645.85

499.64

524.66

748.08

cost per meeting (A/N)

P

Average total cost per

645.85

704.12

622.76

851.57

meeting (M/N)

Q

Number of patients

No data

82

186

155

R

Average total meeting

No data

266.19

197.54

236.24

costs per patient

S

Number of cases presented

No data

109

231

198

T

Average staff attendance

No data

142.10

134.00

162.46

cost per case

presented (A/S)

U

Average total meeting

No data

200.25

159.06

184.94

cost per case

presented (M/S)

Information from log book and supplementary data where specified. a Baseline calculated from information provided on Baseline costing study sheets.

b From financial statements $610 spent on equipment during implementation and post-implementation period. Prorated.

c From financial statements $732.41 spent on telephone and fax during start-up and $501.54 during implementation and post-implementation period. Cost in latter two periods is pro-rated. d Cost based on 0.5 day registrar time +1 hour secretarial support. e Includes the costs associated with room hire, food, and catering, from logbook data.

f The breast care nurse cost was pro-rated using "salaries" $14,982.22 during start-up and $73,023.82 during implementation and post-implementation from the financial statements less breast care nurse meeting attendance (log book). g May form part of "salaries" amount listed under breast care nurse.

h Based on estimate of personal time by senior clinician; costed at appropriate salary rates.

i Log book data ($0) and financial statements $3256.07 travel costs. Pro-rated between implementation and postimplementation.

j From financial statements. During start-up: $4348 overheads and $296.81 other; during implementation and postimplementation: overheads $1739.14, printing and copying $679, and consumables $815.70 (other of $244.35 assumed to have been counted in start-up). Cost in latter two periods is pro-rated. Source. National Breast Cancer Centre.43

Table 7. Cost Summary for Collaboration 3 of Several Regions Within One State, Also Including a Major Metropolitan City and Two Large Rural Centers

Cost Summary for Collaboration 3

Baseline Start-up Implementation Post-implementation Cost Item (6 months) (8 months) (7 months) (6 months)

A

Staff attendance at treatment

13, 206.55

17, 688.37

14, 098.71

12, 571.10

planning meetingsa

B

Capital and equipmentb

No data

0.00

0.00

0.00

C

Teleconferencingc

No data

0.00

0.00

0.00

D

Meeting organization^

No data

4, 426.10

3, 920.26

3, 287.96

E

Other meeting-related costse

No data

0.00

0.00

0.00

F

Total cost of education

No data

0.00

1316.65

544.56

meetings

G

Breast care nursing

No data

47, 401.76

41, 476.54

35, 551.32

(nonmeeting) f

H

Project manager/

No data

0.00

0.00

0.00

coordinatorg

I

Staff personal timeh

No data

2, 631.80

0.00

0.00

J

Travel and accommodation

No data

572.70

1, 316.65

0.00

K

Other costs

No data

10.00

0.00

0.00

L

Total costs per phase

13, 206.55

72, 730.73

62, 680.84

51, 954.94

M

Total meeting costs

13, 206.55

22, 114.47

18, 018.97

15, 859.06

(A+B+C+D+E)

N

Number of treatment planning

26

25(1)

25(1)

20(1)

meetings (number of sites)

O

Average staff attendance

507.94

707.53

563.95

628.56

cost per meeting (A/N)

P

Average total cost

507.94

884.58

720.76

792.95

per meeting (M/N)

Q

Number of patients

No data

90

104

86

R

Average total meeting

No data

245.72

173.26

184. 41

costs per patient

S

Number of cases presented

No data

103

110

89

T

Average staff attendance

No data

171.73

128.17

141.25

cost per case

presented (A/S)

U

Average total meeting

No data

214.70

163.81

178.19

cost per case presented (M/S)

cost per case presented (M/S)

Information from log book and supplementary data where specified. a Baseline calculated from information provided on Baseline costing study sheets. b This cost was not recorded but is estimated using the methods described in the report. c Includes the costs associated with room hire, food, and catering.

d The breast care nurse salary of $5925.22 per month (report) less breast care nurse meeting attendance (from log book =$0). Higher than actual costs as a more senior nurse rate has been used. e Not employed.

f Collaboration estimated personal time during teleconference. Costed at appropriate salary rates. g From ledger summary: $1050 travel from 8/00-6/01 (pro-rated at $95.45/month) and $839.40 from 8-9/01. h From ledger summary: $10 for stationery, assumed to be during start-up.

the economic analysis was to estimate the costs for the set-up and implementation of MDC strategies, with a focus on establishing and maintaining MDC case conference meetings; they were not attempting a cost-effectiveness analysis.

As expected by the evaluators, because of the variance in the number of meetings, conferences, the number of attendees, and baseline differences, the cost differences between collaborations were varied. For example, in Collaboration 3, team meetings had already existed, so the average cost by the end of the project was approximately $800 per meeting (or $180 per case presented), but in Collaboration 1, where team meetings needed to be established, the average cost of the team meeting at the end of the project was approximately $850, or approximately $236 per case presented. Every collaboration had higher cost reported in the start-up phases, for example, Collaboration 1 needed to purchase videoconferencing equipment and Collaboration 3 had to hire a breast care nurse specialist, but over time some cost did decline.

This NMCDP was evaluated again in 2004 to assess the project's ability to sustain its efforts after it was through the demonstration phase.45 The team of evaluators found that while the program was being implemented as planned, there were areas for improvement generally related to adherence to the program principles such as completing weekly case conferences, and the need to reorient team members to the program ideals including reminders of the importance of the weekly team conferences consistently occurring, the support for the necessary infrastructure. Some resistance to change by the professionals was noted as well as some fear of loss of clinical independence.44 A suggestion was made to enlist the help of an clinical team member "champion" to help drive the process. The evaluators also noted the importance of continued allocation of funding to sustain the program. Also, even though the demonstration project did highlight some benefits to the women with breast cancer of the MDC model, such as the benefits of enhanced support and communication, it was recommended by the project evaluators that clinical outcome studies be undertaken to establish the benefits of MDC for patients with other cancers, creating an evidence base for the widen application a MDC

model.43

Other nations have also implemented cancer care programs to address the mul-tifaceted needs of the cancer patient. One such model is called the "shared cancer care program" tested in Denmark whereby the responsibility for the long-term health care follow-up of the cancer patient was to be shared between individuals or teams who are part of separate organizations, or within organizations where considerable boundaries exist.46 This program was aimed at helping patients to break the solitary tie to the oncology specialists in favor of a more shared vision of care with other practitioners, particularly general practitioners.

The shared care program had three elements: (1) knowledge transfer; (2) communication channels; and (3) active patient involvement with more direct communication occurring with the patient's primary care provider and the cancer treating specialists. Figure 2 details the components of each section of the shared care program. This project was tested using randomized control trial methodology with patients randomized into an intervention and a control group. The control group received routine care, but the study subjects received enhanced communication and their treating clinical team shared information more forthrightly. The project required detailed discharge summaries prepared for the end of the treatment period complete with a detailed description of care to date, instructions for further care, and documentation of the information the patient received. The summary also touched on any physical, psychological, and social problems that the patient had, or was expected to get over time. Names and phone numbers of doctors and nurses who worked with the patient were listed for ready reference for all. Patients were told information would be sent to the general practitioners (GPs) and that they could call those physicians with any problems that arose.

Shared Care Program

Knowledge Transfer

• Discharge summary letters following predefined guidelines

• Specific information on the disease and its treatment

• General information about chemotherapy

• General information about radiotherapy

• General information about pain treatment

• Information about treatment of induced nausea and sickness

• Information about some acute oncological condition

Communication Channels

• Names and phone numbers of doctors and nurse responsible for the patient were attached to the discharge summary letter to the GP's

Active Patient Involvement

• In the intervention group, the patience received oral as well as written information about the information package to their GP

• The patients were encouraged to contact their GP when facing problems they assumed could be soled in this setting

Figure 2. Shared Care Program. Source: Nielsen et al.46

Outcome measures for the study addressed the patients' attitude toward the health care services, reports on contact with the GP, and health-related quality of life and performance status. Subjects were followed for 6 months, but were assessed at baseline, 3 months, and 6 months. Evaluation of the program has found it to be successful with respect to patients feeling less like they were in "limbo." At 6 months the men in the intervention group felt less in limbo (p = 0.031) as did the younger (18-49 year olds) age group at both the 3-month and the 6-month follow-up (p = 0.024 and p = 0.031, respectively) than those in the control group. Patients in the intervention group made more contact with their GPs than did those in the control group. It was interesting that the researchers noted that for the men in the intervention group, with men being more likely to not reach out, that the men contacted their GPs as often as the women did. No differences in health-related quality of life were noted between the two groups, meaning that if the individual is in a shared care program, he or she will most likely not report a negative impact on health-related quality of life.

The program involved professional training, the buy-in of GPs to broaden their role to assist with direct follow-up of the oncology care, and reimbursement. The researchers admitted that having the oncologists write more detailed discharge summaries was one of the most challenging components of the program. This process was new in the doctors' routines, and they had to be written and mailed on the day the patient was discharged from the department or outpatient setting. As the department was used to conducting randomized controlled trials, they were used to following guidelines such as the one that scripted the discharge summary. Further support was offered for follow through on the project by the fact that the department felt ownership for the project and a head group of consultants impressed the importance of the project onto the clinicians to follow the protocol. However, the most essential support was that one of the researchers tracked the project daily, leading and encouraging the progress. The project used a GP as this key lead to help bridge between the oncologists and the GPs.

Other countries have also tried to reduce the reliance on the oncologist as the primary source of care for long-term follow-up. In England, a randomized controlled study of lung cancer patients found that follow-up by nurses over cancer care specialists had a high acceptability of the nurse-led follow-up with 75%(203/271) of eligible patients consented to participate "accepting" the nurse over an oncologist.47 The project sought to compare traditional medical follow-up where by the patient is seen at 2 or 3 month interval in a clinic, or more often as needed, for medical assessment and to monitor disease progression. The nurse-led follow-up program allowed clinical nurse specialists to follow up with the patient either over the phone or in a clinic for medical follow-up and assessment. The nurses were prepared for their study role by observing outpatient lung cancer clinics and shadowing medical consultants. Patients were able to contact the nurses at any time and could go in for follow-up at the clinics without appointments. In addition to the medical care, the nurses broaden their roles to offer support, referral to community agencies, and coordination of input between agencies. Nurses were to follow patients for signs of disease progression, symptoms that may need attention, and any other serious complications that may arise.

Patients in the intervention group with the nurse-led follow-up reported less severe shortness of breath at 3 months into the study and higher quality of life ratings as measured by European Organisation for Research and Treatment of Cancer's (EORTC) core questionnaire about quality of life and module about lung cancer. No significant differences in the GPs' overall satisfaction were seen between the control and the intervention groups. Overall, 26 (18%) of the GPs in the study stated that they would prefer nurse-led follow-up for future patients, 13 (9%) would prefer follow-up by an oncologist alone, and 66 (46%) would prefer follow-up by an oncologist and nurse specialist. Whereas costs were originally to be considered part of this study, in the end it was difficult to separate out the time spent by nurses and physicians between study activity and was a part of their daily service, although analysis of the data they were able to use found no significant differences in the costs of the nurse-led program to the conventional or control follow-up. Costs for 3, 6, and 12 months of nurse led care (£222/$370US;£370/$660US; £ 670/$1,195US) were less than conventional care (£229/$515 US; £364/$649US; £750/$1,328US).

Canada has also made some modifications in their cancer care programming to increase the use of primary care over specialists for follow-up care, to reduce reliance on the more expensive specialists and to increase ongoing care into the community. A mail survey of a random selection of patients in Manitoba was conducted to inquire about their care use at 6 and 12 months after diagnosis revealed that 10% of the women had mostly specialist care for all medical needs, and 44% had parallel care where they used specialists for cancer care and family practitioners for all other medical care, and 39% used shared care where both doctors took care of cancer-related care, and the family practitioner followed for all other general medical needs. Study participants felt that the role of the family practitioner was diminished after diagnosis, although specialty care is needed, both family practitioners and patients need to be aware of the valuable contributions the family practitioners could make in follow-up care. The role of specialty clinical for survivors and the training of primary care providers to expand their care of cancer survivors is a very important area; program development and research will ideally guide these activities.

Regional cancer centers in Calgary Canada have recognized this important role as regional experts and have intervened to support the role of the local community family practioner,48such as using a standardized letter template to prompt for inclusion of specific details, recommendations, and contact information for the specialist to use to communicate with family practitioners to hone communication between these two professionals to enhance patient care, similar to the letters to be provided for patients in the Lance Armstrong Foundation Living Well After Cancer project described in an earlier chapter in this book. The study was evaluated in terms of the satisfaction with the consultation letters (comparing routine one in place to the new standardized letter) with respect to their relevance, timeliness, consistency, format, amount, and general satisfaction, and how satisfied the family physicians were with their clinic notes before and after the use of the standardized template letter. A 55% response rate was achieved; overall general satisfaction with the template letters was significantly increased over the nonstandardized letters used previously. The same was found for all aspects of the satisfaction with the clinic notes. After the study's implementation, family physicians reported a shift from 10% satisfaction with their notes to a 60% satisfaction. This increase in amount, type, and frequency of communication has extended the expertise of the regional center into the community in the more rural areas of Canada.48 Further studies need to address the impact on actual patient care, specific outcomes, and satisfaction with services.

The Princess Margaret Hospital in Toronto, Canada offers a survivorship program for those with breast cancer. They offer a free booklet, entitled Getting Back on Track: Life After Treatment, funded by a grant from the Canadian Breast Cancer Foundation—Ontario Chapter, that provides information on what to expect when the acute phase of treatment is over. Also, $2 million was committed in 2004 to establish a Survivorship Clinic and Program to address the physical and psychological needs of breast cancer survivors, and broadening to include all types of cancer.

With the theoretical underpinning of active patient empowerment and The Expert Patient Program, the survivorship clinic's three main program goals include being a forum to encourage peer support, helping survivors create plans for ongoing support and empowerment to assist them in their reintegration, and to increase their quality of life as they transition through the phases of treatment into survivorship. The program begins for the survivors immediately after diagnosis with support and education. The program offers opportunities for face-to-face interaction, well as Internet and phone support. They are also working with the community to link with established support organizations to help bridge the gap from the hospital for the survivors. This is Canada's first comprehensive cancer survivorship clinic and program,25 with formal enrollment just getting underway. Outcomes to be measured include components of quality of life such as stress, distress, and anxiety reduction with goals to develop an empowerment scale along with longitudinal outcomes studies including biological and economic aspects.

A unique aspect of this Canadian program is that survivors are partners in the acute care hospital whereby electronic medical records are made accessible to the survivors. As a phase of training for empowerment, survivors are encouraged to review lab results prior to clinic visits to prepare better questions for their clinical team and to be aware of their own care processes. The program also utilizes peer support volunteers in many areas of the programming. Volunteers must be at least 1 year into their survivorship. The program has future directions to include online support groups and planning for its ongoing funding. As the program is both academic as well as clinical, the program will seek research grants and build on the support of hospital administration on extended care models to cover some of their costs under the auspices of the hospital care program. This program needs to be systematically evaluated.

Looking toward Australia, that nation, as in many developed countries have shifted their focus of treatment of the cancer patient from being mainly the responsibility of the oncologist to use of a professional team including oncology, pathology, radiology, supportive care services, and the patient's general practitioner along with key significant others. The National Breast Cancer Centre and the National Cancer Control Initiative in Australia has developed national practice guidelines that include care following the diagnosis, but also for survivors, focusing on the common physical, psychological, and psychosocial issues that arise for survivors as identified in the literature. Adherence to these guidelines and methods to improve adherence and related outcomes represent important next steps in development and evolution of such programs.

Japan's cancer program, although well-funded, has not yet shifted its focus to cancer survivors. By 1981, Japan was reporting that cancer was the leading cause of death for their nation. In 1997, Japan's Ministry of Health and Welfare, the Ministry of Education, Science, Culture and Sport, and the Science and Science Technology Agency Cancer had provided nearly 6200 million yen (Nearly $50,000,000 US) for cancer research related to early detection, prevention, the development of new diagnostic technologies and therapies, and on the quality of life of cancer patients,29 with no money specifically being earmarked for the study of cancer survivors. Although scientifically rigorous, even the mission of the Japanese Clinical Oncology Group is still directed at improving the standard treatment of cancer by carrying out large, prospective, randomized, multicenter, clinical trials,49 rather than address the ongoing needs of the survivor.

Similar to Japan, China is intently focused on cancer prevention and the promotion of healthy lifestyles, but also has not undertaken a systematic approach to the study of survivors. China suffers from a significant lack of health care resources available to the rural population in order to provide any level of treatment for those with cancer, therefore, cancer survival rates are low in these areas.50 Currently, the goals for China as a nation are to prevent and treat cancer with respect to their cultural needs.

Programs in most of the developed world are not as well planned, organized, or funded as the programs in the UK, Australia, or Canada, or the one supported by the Lance Armstrong Foundation described earlier in this book. Most programs in these countries began in the late 1950s or early 1960s. Most are charitable NGOs and are run by lay individuals, with or without professional supervision. They do not collect data, nor do they test their impact on the populations they are surviving, however they do provide support, some basic patient education, and referral to other programs and services. For example, in Thailand, The Bangkok Breast Cancer Support Group is comprised of over 20 volunteer women who've had personal experience with breast cancer. They strive to provide emotional support both to each other, and to women who've been recently diagnosed with breast cancer. Most of the links on their website are to support agencies within the United States. Likewise, Jamaica offers similar programming with their Reach to Recovery program, a group of breast cancer survivors, friends and well- wishers who meet monthly. Their primary goals are to: (1) Increase public awareness of breast cancer and advocating for early detection to increase the chance of long productive lives; and (2) Provide a self-help group with emotional and psychological support to breast cancer survivors, their families and friends. Again, lay leaders who are survivors themselves, although several of their members are professional counselors, run Jamaica's support groups.

Romania, through an NGO, The Romanian Cancer League, also provides education and support, but they strive to include members of the patients' professional medical team including psychologists, oncologists, priests, and other patients and their families. Since 2001, the Romanian Cancer League has lead the celebration of Cancer Survivors' Day on December 21. This celebration was designed to give survivors a "reward" for their journey in which they receive theater tickets and gifts to "help make them feel important and happy."48 The Cancer League is funded through a variety of sponsors including pharmaceutical companies, medical device manufacturers, private foundations, banks, and investment companies.

Singapore also takes an additional step with their general support programming through their NGO to extend services to include financial assistance, ongoing support for survivors, and rehabilitative care. The Philippine's Cancer Society, also now an NGO, takes another step by including education and information, services such as support, pain relief, and consultations, but they also include research as part of their mission to address all levels of cancer control. The Society is lead by a board of directors made up of seven lay individuals and eight doctors who are elected to their positions on an annual basis. It is funded through membership dues, donations, and contributions to annual fund campaigns. It receives no governmental

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