1. ).
Young Women with Early Stage Breast Cancer and their Supportive Care Needs: Results from a Regional Survey Jenna Ratcliffe1, Nicole Hodgson1,2, Punam Rana3, Margaret Forbes1,2, Mark Levine1,2, Jonathan Sussman1,2,4 1McMaster University, Faculty of Health Sciences, Department of Oncology, 2Hamilton Health Sciences, Juravinski Hospital & Cancer Centre, 3Sunnybrook Hospital Odette Cancer Centre, Toronto, 4Cancer Care Ontario
LOGO
RESULTS continued…
OBJECTIVES
To describe unmet supportive care needs of YWBC (<45 years) in a representative region.
2. To describe the level of satisfaction with information to support cancer treatment decision making and causes of distress among YWBC (<45 years) in a representative region.
BACKGROUND
Approximately 18% of all newly diagnosed breast cancer cases in Canada occur in women less than 50 years of age.1 Young women with breast cancer (YWBC) may experience unique physical and psycho-social issues yet there is a lack of data outlining their specific needs and concerns across the trajectory of care. This study described the unmet supportive care needs of YWBC at a regional cancer centre in southern Ontario, Canada.
STUDY DESIGN
This study used a prospective survey design that was administered to consenting YWBC. The Supportive Care Needs Survey (SCNS-SF34) was used to measure respondents’ need for cancer support and care. This instrument has been validated in a number of settings and captures needs through 34-items that cover 5 domains: psychological needs, health system and informational needs, physical and daily living needs, patient care support needs and sexuality needs.2
In addition, a unique 26-item survey was used that was designed to capture the distinct experiences of young women based on the findings on the recurring themes of an earlier project that informed 3 levels of inquiry: decision making/ informational support, disease/treatment characteristics, and causes of distress.3 Ethics approval was obtained from the Hamilton Integrated Research Ethics Board prior to study commencement.
RESULTS
The Juravinski Cancer Centre Health Informatics team provided a list of eligible patients. Fifty-one patients were approached. Of these patients, 35 completed the survey resulting in a 69% response rate. The majority of respondents were between the ages of 33 and 40 (48.6%), were diagnosed within 6 to 12 months of study entry (60.0%); were in active treatment (60.0%); had a university degree (51.4%); were married (82.9%) and (65.7%) have young children.
Overall respondents reported a high level of satisfaction with the provision of information to support cancer treatment decision making. However, scores were lower in satisfaction relating to the provision of fertility information. In terms of psychosocial support, 40% percent of reported they had met with a social worker and 17% reported attending a breast cancer support group.
RESULTS continued…
Table 1. Five top ranked moderate to high unmet needs reported in last month (n=35)
Table 1.The top 5 most common reported Moderate to High Unmet Supportive Care needs reside in the psychological domain. Studies that have examined older women with breast cancer have also indicated unmet needs in the psychological domain4 however the high unmet need of ‘concerns of those close to you’ is unique to this young group of respondents.
Table 2. Moderate to high levels of distress were reported for all responses. Highest mean scores were found in responses to ‘fear of recurrence’, ‘waiting for biopsy results’ and ‘telling children of the breast cancer diagnosis.’ Results also found that YWBC in the delayed breast reconstruction group reported elevated levels of distress due to body image than those who were undergoing immediate reconstruction.
Table 3. Results indicated YWBC in follow up reported the most unmet psychological needs. Half of those (50%) in follow up reported unmet needs with anxiety, ‘fear of cancer spreading’ and ‘concerns of those close to them’.
Table 4. Using case summary analysis our results revealed that 60% of YWBC who received lumpectomy had indicated 2 or more moderate to high unmet psychological needs. 36% who received mastectomy had indicated at least 2 moderate to high unmet psychological need. 38% of YWBC who received a bilateral mastectomy had indicated at least 2 moderate to high unmet psychological need.
CONCLUSION
This study provides a comprehensive profile of unmet need in a population of YWBC treated in a regional cancer program. It highlights that supportive care needs particularly those related to psychological burden and fertility concerns are unmet. YWBC in follow up reported the most unmet psychological needs. This suggests that YWBC psychological needs during active treatment were not attended to or that the follow up phase yielded needs they had not previously formulated. This finding requires future investigation. YWBC receiving lumpectomy only reported more high to moderate unmet psychological needs than their counterparts. This finding also requires further examination. Timely identification and appropriate referral to fertility specialists and/or supportive care social workers could improve current practice. Further research is needed to explore how barriers to fertility and supportive care needs of young adults with cancer may best be overcome.
Rank
(SCNS-Item)
Moderate to High Need
n (%)
Domain 1
Concerns about the worries of those close to you
12 (34.3)
Psychological 2
Fears about the cancer spreading 3
Anxiety
10 (28.6) 4
Learning to feel in control of your situation
8 (22.9) 5
Uncertainty about the future
Table 2. Mean scores for causes of distress
Statement n
Mean
(SD)
Fear of recurrence caused me distress 33
4.6
(0.8)
Waiting for biopsy results caused me distress 34
4.5
(1.0)
Telling my children about my breast cancer diagnosis caused me distress  23
Telling my parents caused me distress 30
4.2
(1.1)
Telling my spouse/partner caused me distress 27
4.1
(1.3)
Losing my hair caused me distress 31
3.8
(1.2)
Having surgery caused me distress 32
Body image (e.g. scarring, loss of breast (s) caused me distress)
3.5 
Note: Responses range from 1=Strongly disagree to 5=Strongly agree
Table 3. Cross-tabulation of active treatment or follow up and moderate to high unmet needs in last month
(SCNS-Item)
In Active Treatment
n=21 (%)
In Follow up
n=14 (%)
Concerns about the worries of those close to you
5 (23.8)
7 (50.0)
Fears about the cancer spreading
Anxiety
3 (14.2)
Feelings about death and dying
1 (4.8)
6 (42.8)
Learning to feel in control of your situation
5 (35.7)
Uncertainty about the future
Table 4. Cross-tabulation of surgery type and moderate to high unmet needs in last month
(SCNS-Item)
Lumpectomy
n=10  (%)
Mastectomy
n=11 (%)
Bilateral Mastectomy
n=13 (%)
Concerns about the worries of those close to you
6 (60.0)
2 (18.2)
3 (23.1)
Fears about the cancer spreading
5 (50.0)
4 (36.4)
Anxiety
3 (27.3)
2 (15.4)
Learning to feel in control of your situation
3 (30.0)
Uncertainty about the future
REFERENCES
1. Canadian Cancer Society. (2015). Incidence: How many people in Canada get cancer? Canadian Cancer Statistics Ref Type: Online Source
2. Bonevski, et al. (2000). Evaluation of an instrument to assess the needs of patients with cancer. Cancer, 88,
3. Rana, et al. (2014) Young women with breast cancer: Needs and experiences [abstract]. In: Proceedings of the 37th Annual San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Cancer Res 2015;75(9) P
4. Edib, et al. (2016). Most prevalent unmet supportive care needs and quality of life of breast cancer patients in a tertiary hospital in Malaysia. Health Quality of Life Outcomes., 14, 26
Funded by the 2013 Bright Run for Breast Cancer Research and the Juravinski Hospital &
Cancer Centre Foundation