D-CRSE: Diminishing chemotherapy-related side effects through patient education, a mixed-methods pilot study

Figures & data

Table 1. Demographics and characteristics for consented patients (n = 45), all baseline patients (n = 40), and comparisons between those who did and did not complete the week 12 visit.

Variables: n (%), unless otherwise specified	Consented patients	Patients attended baseline visit			p-Value
	All consented (n = 45)	All completed baseline visit (n = 40)	Patients who did complete week 12 visit (n = 26)	Patients who did not complete week 12 visit (n = 14)
Age: mean (SD)	56 (15.1)	55.8 (14)	56.4 (15.6)	54.6 (10.9)	0.54
Age: median	58	55.6	57.3	53.9
Female	37 (82.2)	34 (85)	22 (84.6)	12 (85.7)	1
Patient had a family member undergo cytotoxic chemotherapy	20 (47.6)	17 (45.9)	10 (41.7)	7 (53.8)	0.51
Family member with cancer was a 1st degree relative	13 (28.8)	12 (30)	7 (26.9)	5 (35.7)	0.72
Breast cancer	35 (77.8)	33 (82.5)	21 (80.8)	12 (85.7)	1
Pathology
Invasive ductal carcinoma	28 (82.8)	27 (67.5)	17 (65.4)	10 (71.4)	1
Invasive lobular carcinoma	3 (8.6)	3 (7.5)	3 (11.5)	0 (0)	0.54
Invasive metaplastic	3 (8.6)	3 (7.5)	2 (7.7)	1 (7.1)	1
Molecular subtypes
ER positive	22 (48.9)	21 (52.5)	11 (42.3)	10 (71.4)	0.11
PR positive	18 (40)	17 (42.5)	9 (34.6)	8 (57.1)	0.20
HER2 positive	10 (22.2)	9 (22.5)	7 (26.9)	2 (14.3)	0.45
GI cancer	10 (22.2)	6 (15)
Colorectal carcinoma	10 (22.2)	6 (15)	5 (19.2)	1 (7.1)	0.40
Chemotherapy regimen
Adriamycin and cytoxan	9 (20)	8 (20)	3 (11.5)	5 (35.7)	0.10
Docetaxel, carboplatin, trastuzumab, and pertuzumab	4 (8.9)	4 (10)	2 (7.7)	2 (14.3)	0.60
Trastuzumab and paclitaxel	2 (4.4)	2 (5)	2 (7.7)	0 (0)	0.53
Docetaxel and cyclophosphamide	5 (11.1)	5 (12.5)	2 (7.7)	3 (21.4)	0.32
Docetaxel, trastuzumab, and pertuzumab	3 (6.7)	3 (7.5)	2 (7.7)	1 (7.1)	1
Pembrolizumab, paclitaxel/carboplatin, gemcitabine/nab paclitaxel	2 (4.4)	2 (5)	2 (7.7)	0 (0)	0.53
Carboplatin-paclitaxel	1 (2.2)	1 (2.5)	0 (0)	1 (7.1)	0.35
Nab paclitaxel	3 (6.7)	2 (5)	2 (7.7)	0 (0)	0.53
Bevacizumab	1 (2.2)	1 (2.5)	1 (3.8)	0 (0)	1
Capecitabine	1 (2.2)	1 (2.5)	0 (0)	1 (7.1)	0.35
5 FU and oxaliplatin	9 (20)	6 (15)	5 (19.2)	1 (7.1)	0.40
Other	11 (33.5)	11 (27.5)	8 (30.8)	3 (21.4)	0.72
Concurrent therapy	11 (24.4)
Immunotherapy	3 (6.7)	3 (7.5)	2 (7.7)	1 (7.1)	1
Endocrine therapy	4 (8.9)	4 (10)	2 (7.7)	2 (14.3)	0.60
Radiation therapy	4 (8.9)	4 (10)	1 (3.8)	3 (21.4)	0.11
ECOG performance score					1
0	36 (80)	31 (77.5)	20 (76.9)	11 (78.6)
1	6 (13.3)	6 (15)	4 (15.4)	2 (14.3)
2	3 (6.7)	3 (7.5)	2 (7.7)	1 (7.1)

Figure 1. Mean ETS component changes between week 0 (baseline), week 6, and week 12 visits.

Figure 2. Mean MSAS component changes between week 0 (baseline), week 6, and week 12 visits.

Table 2. Mean score comparisons from baseline to 6 and 12 weeks for the ETS and MSAS.

Survey component	Baseline visit (n = 40) Mean (SD)	Week 6 visit (n = 36) Mean (SD)	p-Value: baseline vs. week 6 visit	Week 12 visit (n = 26) Mean (SD)	p-Value: baseline vs. week 12 visit
ETS-distress	2.5(3)	1.5(2.2)	0.006**	1.2(1.6)	0.014*
ETS-anxiety	4.4(3.1)	2.2(2.5)	<0.0001**	2(2.4)	<0.0001**
ETS-depression	2.3(2.5)	1.9(2.1)	0.204	1.3(2)	0.042*
ETS-anger	1.9(2.6)	1.3(1.9)	0.038*	0.9(1.5)	0.032*
ETS-need help	1.2(2.3)	1.1(1.9)	0.196	0.5(1.3)	0.255
Overall mean ETS	2.4(2.1)	1.7(1.8)	0.001**	1.2(1.3)	0.0004**
MSAS-psychological symptoms	1.1(0.9)	1(0.8)	0.1	0.6(0.6)	0.005*
MSAS-physical symptoms	0.6(0.5)	0.9(0.5)	0.071	0.8(0.6)	0.101
MSAS-global distress index	1(0.7)	1.1(0.6)	0.868	0.9(0.8)	0.607
Overall mean MSAS	0.5(0.4)	0.8(0.4)	0.179	0.7(0.4)	0.301

Significant at the *5% level; **1% level.

Table 3. Qualitative results: assorted first impressions.

Comments pertaining to user experience	Comments related to future improvements
“The content is presented in a straightforward way. It is clear and organized. I like that it gives me all the information. I like to be aware of all the things that could happen to me and I feel more comfortable using this instead of google because I know it was made by medical professionals. I really like that it says what to do to avoid problems, and even more than that, I like that it explains why.”	Made suggestions to include pictures, and bullet points to make the brochure easier to read.
Patient said that it was nice to have something tangible to refer to rather than just referring to the internet to find information. She appreciates that all of the information is in one place.	“I wish that it had more pictures, and the table of contents can be intimidating with all the side effects.”
Patient verbalized that she liked having all the information from the brochure in one place. She thought the content looked applicable and helpful to her at first glance. Patient is excited to “mark up” the pages.	Loved the organized book. “Wish we had it at diagnosis.”
Patient compared the brochure to appear simpler than the massive binder she received with information upon diagnosis.	Patient was already aware of a lot of the information that the brochure provided but she thought it would be helpful for someone that does not have the same level of knowledge.
The patient expressed that she thinks the booklet is going to be really great. She said she loves the subtitles because everything is easy to identify and find quickly through the table of contents. She thinks the booklet is going to be something good to have because if she experiences symptoms, she can refer to the information in the booklet easily.	She liked the brochure and found it to have helpful information. However, she found the table of contents to be overwhelming, especially for someone starting chemotherapy.

Data availability statement

The participants of this study did not give written consent for their data to be shared publicly, so due to the sensitive nature of the research supporting data is not available.