Candian Hospital based lymphedema programs. Pathways Vol 9, No 2. Spring 2020.

Research Perspective

Report of the round table discussion

Canadian hospital-based lymphedema programs

By Marie-Eve Letellier and Mary-Ann Dalzell

T

he second edition of the “round table discussion for hospital based-programs” was held during the National Lymphedema Conference in Toronto, November 1st and 2nd 2019. Like its previous edition, the lunchtime session was a great success with, unfortunately, too little time and consequently limited discussions.

Mary-Ann Dalzell, Chair of the Oncology Division of the Canadian Physiotherapy Association, led the discussions and Marie-Eve Letellier, clinician-researcher in post-breast cancer arm morbidity and lymphedema, assisted significantly by recording the notes upon which this article is based. Thanks to the assistance of the Canadian Lymphedema Framework (CLF) the majority of provinces were represented. Hospital-based clinicians ranged from physiotherapists (50%) to a large variety of allied health care professionals (50%) including nurses, occupational therapists, kinesiologists, and physicians. A participant survey was sent before the conference to facilitate the conversations and the following is a summary of our survey results and discussions.

Characteristics of hospital based lymphedema programs across Canada The characteristics of the programs sampled had many common elements. A lack of human

Annual adult allottment of compression garments

Newfoundland & Labrador British Columbia

3 daytime garments 1 nighttime + 1 adjustable garment 75% reimbursed PE I No garments

Alberta 3 ready-made garments or 2 custom garments 75% reimbursed

Nova Scotia No garments

Saskatchewan 4 daytime garments (incl. adjustable garment) 1 nighttime garment (24mths) 100% reimbursement

New Brunswick No garments Manitoba

Ontario

No garments

6 garments including nighttime 75% reimbursed

resources with rarely a full-time equivalent dedicated to lymphedema services was prevalent -- and as a result most programs were overburdened with patients in need of services.

Most patients seeking consultation and treatment had secondary lymphedema related to cancer with Alberta being one of the rare provinces with a program for primary and other non-cancer related lymphedema. Patients with breast cancer and upper limb lymphedema were being screened and treated in all hospitals

Mary-Ann Dalzell, BScPT, MSc is co-founder of the McGill Cancer Nutrition- Rehabilitation Program, and served as Associate Director from 2002 to 2006. As a clinician with 30 years’ experience in the management of complex orthopedic problems, she has coordinated and taught specialized courses in Orthopedics, Sports Medicine, Biophysical Modalities and presently teaches Cancer Rehabilitation Courses across Canada.

Marie-Eve Letellier, PhD, is a kinesiologist, a lymphedema therapist and theory instructor (Vodder) and an Aqua lymphatic Therapy (ALT) instructor (Tidhar). She is a clinician-researcher with a great interest in arm dysfunction during and after breast cancer treatment. She works in a hospital setting and also has a private practice.

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B1551 CLF_Pathways_Spring 2020.indd 16

No garments

Quebec

2 daytime garments BCRL surgery related only 100% reimbursed

NOTE: All provinces have some provisions of garments for low income individuals plus program conditions including eligibility and reimbursement caps.

Check with provincial health care services for details.

represented (100%) and, in addition, some offer preventive educational sessions one month post-surgery. In great contrast, lower limb lymphedema screening and management programs are rare.

The principal sources of referral to lymphedema services are oncology-related specialists, family physicians and nurses. Given the referral overload, questions arose on how each hospital and/or provincial region deals with the triage and decision-making process as well as the management of waiting lists and follow-up schedules.

Most hospitals are using a “P1-P2-P3” prioritization system, classifying patients as being urgent, semi-urgent versus educational and community management. Patients are screened by clerks, therapists or physicians and the first triage identifies the type of lymphedema (primary, cancer-related, or other secondary), the urgency for intervention, and eligibility for treatment. Palliative care is considered high priority. Ineligible patients due to restricted admission criteria are systematically referred to other community services and eligible patients generally given some generic advice Spring 2020

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and put on a waiting list for treatment.

The waiting period varies from a few weeks to several months. Priority is given to patients in acute need of treatment or those who have developed frank complications secondary to their lymphedema. As a result, most hospitals almost exclusively manage urgent cases. When the waiting period is extended, some clinics call patients every three months to ascertain if there are changes in lymphedema status and/or verify if they consulted private community-based therapists. One center uniquely offers an education class to those on the waiting list and this session is scheduled once per month. At that time, a questionnaire is filled by participants following the session in order to help prioritize the waiting list. Once again, when possible either financially or geographically, patients are referred to therapists and fitters in the community due to staff limitations. The reality remains that hospital services for lymphedema provided to our Canadian population fall far short of being adequate.

Data collection is ad hoc and used by 68% of the respondents for both clinical and research purposes. The timing of specific protocols for follow-up varies from monthly evaluations, to periodic calls, to ONLY if

treatment inclusion and garment coverage, varying from none to unlimited coverage.

See the chart regarding basic information for each province as of January 2020.

Please inquire with provincial health care services for greater detail and information.

MLD within hospital clinics is provided in most provinces, however interventions are limited in time and access is NOT in accordance with the severity or necessity of treatment but rather in accordance with each patient’s diagnosis (breast vs other), age (children) or income capacity (low). About half of the programs are included in the hospital budget and the other half funded through private foundations and fund-raising activities. Again, provincial standards for funding fall far short of the need and rely on community resources and private insurance coverage to bridge the gap.

Service gaps and challenges We left this session with more questions than when we arrived, with all participants agreeing that there are significant inequities across Canada and within each province in terms of service provision and coverage. The standardization of criteria for service provision needs to be established to ensure that the existing bias

Percentage of hospital based programs servicing secondary lymphedema related to cancer etiologies 100

100

90 80 70 60

50

50

50

50

42 35

40

35

30 20 10 0 Breast

Prostate

Gynecological

needed. Management tends to be done primarily in private community settings and as a result there are great disparities in access to lymphedema services between the insured or financially capable and those who are uninsured. A good example of these disparities is reflected in provincial garment coverage.

Provincial funding Significant variance and inequality exists across Canada relating to provincial Spring 2020

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Melanoma

Head & Neck

Sarcoma

Other

towards exclusive management of breast cancer patients is re-examined and that inclusion criteria reflect the needs of lymphedema patients as a whole as opposed to their individual financial means. It was unanimously agreed that staffing ratios related to the volume of referrals must be given greater priority.

Advocacy with provincial decision-making entities and the education of physicians on prevention, recognition, and management of primary and secondary lymphedema as an

The reality remains that hospital services for lymphedema provided to our Canadian population fall far short of being adequate. essential service is key to the development of services across the country. All hospital participants in this roundtable discussion endorsed the need for multidisciplinary teams with physicians and allied health care professionals working together in a chronic disease model of care, which adapts well to lymphedema. Moreover, there is a definite need for improved focus on the whole person and best supportive care rather than condition-specific management.

Conclusion There are always a million things that can be done, but with time being limited the questions arising were related to strategies for improvement. The current bias in our most common models of care slant significantly towards the insured and financially stable Canadians. The recognition that lymphedema significantly impacts quality of life and cannot be completely self-managed is critical. It was concluded that the next step for hospital-based programs is to have clear Canadian guidelines developed and reinforced by the clinical experiences of all participants.

For provinces that are in the process of obtaining better coverage, continued advocacy for adequate hospital based services is essential. Most importantly, a thrust to have publicly subsidized programs available to ALL types of lymphedema must be made. This includes primary and secondary, acute and chronic, lower limb, trunk as well as head and neck lymphedema. These patients need resources to be made equal to those who have had breast cancer. LP We wish to thank all the hospital-based clinicians for their enthusiastic participation and sharing of war stories. In addition, we could not have gathered the troops without the assistance of Anna Kennedy and Shannon Moore, who was acting as support to the CLF. L y m p h e d e m a p a t h w a y s . c a 17

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