Colleen Harris MN NP MSCN University of Calgary MS Clinic At the - - PowerPoint PPT Presentation

Colleen Harris MN NP MSCN University of Calgary MS Clinic

 At the conclusion of this session the participant will

be able to:

• discuss what roles of Canadian MS Nurses are

valued highly by patients

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• Canadian nurses have enjoyed a close collaboration through

the structure of the “Network of MS Centers”

• We often connect at meetings and by email to develop best

practices and share frustrations

• Growing patient care demands and complex new treatments

were voiced as challenges to resources and time

• Nurses were concerned about gaps in services and wanted to

know how well we were doing in meeting patient expectations

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

Colleen Harris, MN NP MSCN, Foothills Medical Centre, Calgary, Alberta



Bonnie Blain, RN, MSCN, Central Alberta MS Clinic, Red Deer, Alberta



Janet Brown, RN, MSCN, MS Clinic–Eastern Health, St. John's, Newfoundland-Labrador



Peggy Cook, RN, BN, Saint John Regional Hospital, Saint John, New Brunswick



Josée Poirier, BSc, MSCN, Hôpital Notre-Dame (CHUM), Montreal, Quebec



Sheryl Clarke, RN, BScN, St. Michael’s Hospital, Toronto, Ontario



Shirley MacGowan, RN, MSCN, Saskatoon City Hospital, Saskatoon, Saskatchewan



Lynn McEwan, BSN, NP, MSCN, London Health Sciences Centre, London, Ontario

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

Burke T., Dishon S., McEwan L., & Smirtka J. (2011). The evolving role of the MS

• nurse. An international perspective. Int J MS Care 13, 105-112.
• Described challenges to the future of MS Nursing related to therapeutics



Galushko M., et al (2014). Unmet needs of patients feeling severely affected by MS in Germany: A qualitative study. Journal of Palliative Medicine, 17, 3, 274-281

• Themes of unmet family support, challenges with physician/patient relationship, inadequate

health care services including palliative care



Rieckmann P., et al (2015). Achieving patient engagement in MS: A perspective from the MS in the 21st Century Steering Group. MS and Related Disorders, 4, 2012-218

• Discussed strategies for better patient and family engagement in care of the future

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

MSology is an open-access news/information website based in Canada for patients with MS; launched in 2012



• Approx. 40,000 visitors/year worldwide
• Most visitors from English-speaking countries with high MS prevalence: Canada, USA, UK
• Visitor demographics are representative of MS prevalence and age group



Has worked with the Canadian MS nursing community since launch to develop content

• Patient information booklets
• Infographics
• Radio programs (MS Radio) of roundtable discussions (MS symptoms, self-management, etc.)

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Project Purpose: To use patient survey(s) on MSology to stratify the most important nursing roles by category (e.g. providing specific healthcare services, education, safety monitoring, side effect management, lifestyle advice, psychosocial support, etc.) and by task as perceived by patients.

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Canadian MS Nursing group developed a preliminary list of questions (max. 20). Examples of areas that were surveyed:

 Demographics  Current expectations of their MS nurse  MS nursing-specific roles (vs. neurologist, GP, other HCPs,

patient support program nurses)

 Responses:

• Multiple choice, Likert scale (5 responses); write-in questions

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 Survey was posted on MSology (www.msology.com) in the

period June to September 2016

 Posted in English and in French  Responses were anonymous  Survey was housed on MSology website and promoted on

MSology social media accounts (Facebook, Twitter, Pinterest)

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 Total number of respondents: 248

• Non-Canadian respondents excluded from analysis (n=22)
• Analysed n=226 (English, n=187; French, n=39)

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N=224; 2 no response

• Somewhat higher response in women
• Female:Male ratio 4.6:1

DEMOGRAPHICS

13 0 13 42 74 97

• High response in older individuals

%

DEMOGRAPHICS N (n=226)

Canada UK US Other

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N=248

Analyses on all other slides limited to Canadian cohort

N=226 Note: Canadian respondents were not queried about their province

91.1% of respondents were from Canada DEMOGRAPHICS

11.1 21.8 12.9 54.2

10 20 30 40 50 60

< 2 years 2-5 years 6-10 years >10 years

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% Majority of respondents had long-standing disease, consistent with the older age of the sample DEMOGRAPHICS 25 49 29 122

N (n=225)

21.4 34.8 25.4 18.3

5 10 15 20 25 30 35 40 No impairment Minimal impairment Moderate impairment Severe impairment 16 Defined in survey as: Minimal impairment – can walk unaided Moderate impairment – occasionally/frequently use cane or other assistive device Severe impairment – require a cane, walker or wheelchair

48 78 57 41 % DEMOGRAPHICS N (n=224)

41.1 34.8 16.1 5.4 2.7

10 20 30 40 50 Specialized MS clinic Neurologist at clinic/hospital Neurologist private practice Family physician Other* 17

N (n=224) 90 78 36 12 8

Other (n=8): No treatment (n=1); naturopath (n=2); GP with annual visits to neurologist (n=2); treated in US (n=1)

%

DEMOGRAPHICS

Yes No - I have never taken No - I did but I have stopped

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N=223 55.2% 26.9% 17.9% DEMOGRAPHICS

Yes No Not sure

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N=225

49.3% 11.6% 39.1%

DEMOGRAPHICS

 Provided with a list of roles/tasks  Asked to rate their importance on 5-point Likert scale:

• Very important (5 points)
• Important (4 points)
• Neither Important/Unimportant (3 points)
• Not very important (2 points)
• Unimportant (1 point)

 Scores were averaged according to number of responses

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4.58 4.57 4.12 4.54 3.99 4.27 4.49 4.39 4.36

3 3.2 3.4 3.6 3.8 4 4.2 4.4 4.6 4.8 5

Gen education about MS Education about how MS may develop Discussion of life planning Education about MS relapses Educating family members Educating your family doctor Discussion of how MS may affect lifestyle Providing emotional support Explaining what the doctor said

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N= 222 223 218 222 221 220 221 223 222 Very important = 5; Important = 4; Neither important/unimportant = 3; Not very important = 2; Unimportant =1; scores added and averaged for each service

4.07 4.29 4.35 4.29 4.26 4.38 4.24 4.38 4.33

3 3.2 3.4 3.6 3.8 4 4.2 4.4 4.6 4.8 5 Talking about issues not comfortable discussing with doctor Education about different meds and how they work Discussion of possible benefits

• f treatment

Facilitating communication with doctor Discussion of possible side effects Discussion of how medications compare Training on how to take medication Education about how to manage side effects Assistance

• btaining financial

aid

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N= 222 221 222 222 223 221 222 221 223 Very important = 5; Important = 4; Neither important/unimportant = 3; Not very important = 2; Unimportant =1; scores added and averaged for each service

4.50 4.49 4.55 4.36 4.39 4.21 4.21 4.33 4.39

3.00 3.20 3.40 3.60 3.80 4.00 4.20 4.40 4.60 4.80 5.00 Assessing relapses Helping you manage relapses

• Avail. by phone

for questions about MS symptoms

• Avail. by phone

for questions about meds Avail by phone for questions about tests/procedures Providing advice

• n wellness

Providing advice about CAM Monitoring test results Answering questions about test results

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N= 222 222 222 222 222 223 223 222 224

Very important = 5; Important = 4; Neither important/unimportant = 3; Not very important = 2; Unimportant =1; scores added and averaged for each service

4.37 4.35 4.03 3.53 4.10 4.07

3.00 3.20 3.40 3.60 3.80 4.00 4.20 4.40 4.60 4.80 5.00

Helping you navigate HC system Providing referral to HC services Providing info about community resources Keeping track of adherence Lobbying govt about access Promoting public awareness of MS

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N= 224 225 225 220 220 218

Very important = 5; Important = 4; Neither important/unimportant = 3; Not very important = 2; Unimportant =1; scores added and averaged for each service

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TOP 5

• 1. General education about MS

4.58 2. Education about how MS may develop 4.57 3. Available by phone to answer questions about MS symptoms 4.55 4. Education about MS relapses 4.54 5. Assessing relapses 4.50

BOTTOM 5

• 1. Keeping track of adherence

3.53

• 2. Educating family members about MS

3.99

• 3. Providing information about community

resources 4.03

• 4. Talking about issues they’re not

comfortable discussing with the doctor 4.07

• 5. Promoting public awareness of MS

4.07

Yes No

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41.3% 58.7%

N=225

General impressions



Most common comment: Don’t have access to either/no clinic nurse/no PSP nurse/infrequent contact



PSP nurse easier to contact

• Typically only discusses the medication
• No personal contact



MS nurse less accessible, but meets face-to-face, offers clinical follow-ups (e.g. symptom assessment) and provides more comprehensive information about MS



One comment that drug companies shouldn’t have direct patient contact

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0.9 6.3 18.6 42.6 31.4

5 10 15 20 25 30 35 40 45 Once a month Every 1-3 months Every 6 months Once a year Only when having problem 28 N (n=205) 2 13 38 87 64

%

8.9 15.7 30.9 18.4 26.0

5 10 15 20 25 30 35 Once a month Every 1-3 months Every 6 months Once a year Only when having problem 29 N (n=223) 20 35 69 41 58

%

3.2 6.9 5.5 11.9 19.4 52.9

10 20 30 40 50 60 Once a month Every 1-3 months Every 4-6 months Once or twice a year Only when having problem Rarely/never 30 % of sample (n=217) n= 7 15 12 26 42 115

%

Key comments

 Difficulty accessing nurse/phone calls not returned  Problem symptoms not adequately addressed  Delays in completing paperwork (e.g. insurance forms)

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

Generally positive comments about MS nurses



Difficulty accessing MS clinic



Difficulty accessing MS nurses



Would like email access



Nurses are overworked/too busy/have inadequate resources



Would like referral to non-drug services/resources



Would like nurses to use a symptom checklist so patient doesn’t have to initiate conversation

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81.9 18.0 83.7 16.3

10 20 30 40 50 60 70 80 90

Female Male

With MS clinic nurse contact Without MS clinic nurse contact

33 % of patients

8.1 20.7 33.3 37.8 2.3 13.6 34.1 50.0

10 20 30 40 50 60

18-29 years 30-40 years 41-50 years 51 or older

With MS clinic nurse contact Without MS clinic nurse contact

34 % of patients

16.4 22.7 14.5 46.4 5.7 20.5 12.5 61.4

10 20 30 40 50 60 70

Less than 2 years 2-5 years 6-10 years Over 10 years

With MS clinic nurse contact Without MS clinic nurse contact

35 % of patients

66.1 21.1 12.8 41.4 35.6 22.9

10 20 30 40 50 60 70

Yes No - I did but stopped No - I never did

With MS clinic nurse contact Without MS clinic nurse contact

36 % of patients

 Patients highly rate the value of MS nurses in:

• Educating them about their diagnosis and prognosis
• Assessing and managing relapses

 Respondents were generally older and most did not have

access to MS specialist nursing care

• May contribute to the high proportion (45%) of patients who were

untreated or had stopped taking a DMT

 Results support the central role of nursing in the day-to-day

management of MS patients

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 Develop and evaluate disease specific

education strategies and materials

 Further exploration of MS specific needs of

• lder patients with out regular access to MS

nurses or clinics

 Evaluate strategies for improving access to

nurses in clinics – e.g. email

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