Effects of Music Therapy on Quality of Life in Adults with Sickle Cell Disease (MUSIQOLS): A Mixed Methods Feasibility Study

Figures & data

Figure 1 Flow diagram of MUSIQOLS study.

Abbreviations: ACC, Acute Care Clinic; ASCQ-Me, Adult Sickle Cell Quality of Life Measurement System; CSQ-SCD, Coping Skills Questionnaire for Sickle Cell Disease; MT, music therapy; PROMIS-29, Patient Reported Outcomes Measurement Information System – 29; REDCap, Research Electronic Data Capture; SCD, sickle cell disease; SCSES, Sickle Cell Self-Efficacy Scale; WLC, waitlist control.

Figure 2 Outcome measures utilized in MUSIQOLS.

Abbreviations: ACC, Acute Care Clinic; CSQ-SCD, Coping Skills Questionnaire for Sickle Cell Disease; ED, emergency department; MT, music therapy; MUSIQOLS, MUSic therapy to Improve Quality Of Life in Sickle cell disease; OARRS, Ohio Automated Rx Reporting System; PROMIS-29, Patient Reported Outcomes Measurement Information System – 29; SCD, sickle cell disease; SCSES, Sickle Cell Self-Efficacy Scale.

Table 1 Demographic Characteristics of the Study Participants

Variables	All Participants (n=24)	Study Groups		p value
		Music Therapy (n=12)	Waitlist Control (n=12)
Age (years), mean ± SD	32.33 ± 8.43	34.50 ± 9.50	30.17 ± 6.93	0.22^a
Sex, n (%)				> 0.99^b
Male	9 (37.5)	4 (33.3)	5 (41.7)
Female	15 (62.5)	8 (66.7)	7 (58.3)
Race, n (%)
Black	24 (100)	12 (100)	12 (100)
Education, n (%)				0.14^c
< HS	1 (4.2)	0 (0.0)	1 (8.3)
HS graduate	9 (37.5)	5 (41.7)	4 (33.3)
Some college	9 (37.5)	6 (50.0)	3 (25.0)
College graduate	2 (8.3)	1 (8.3)	1 (8.3)
Refused to answer	3 (12.5)	0 (0.0)	3 (25.0)
Religious Background, n (%)				0.53^c
Christian	15 (62.5)	7 (58.3)	8 (66.7)
None of the above	1 (4.2)	0 (0.0)	1 (8.3)
Other	1 (4.2)	1 (8.3)	0 (0.0)
Preferred not to answer	7 (29.2)	4 (33.3)	3 (25.0)
Household Income, n (%)				0.45^c
$0 to $9,999	8 (33.3)	4 (33.3)	4 (33.3)
$10,000 to $24,999	9 (37.5)	6 (50.0)	3 (25.0)
$25,000 to $49,999	1 (4.2)	0 (0.0)	1 (8.3)
Preferred not to answer	6 (25.0)	2 (16.7)	4 (33.3)
Employment Status, n (%)				0.21^c
Employed part time	5 (20.8)	1 (8.3)	4 (33.3)
Homemaker	1 (4.2)	0 (0.0)	1 (8.3)
Self-employed	4 (16.7)	3 (25.0)	1 (8.3)
Student	2 (8.3)	0 (0.0)	2 (16.7)
Unable to work	9 (37.5)	6 (50.0)	3 (25.0)
Unemployed, looking for work	3 (12.5)	2 (16.7)	1 (8.3)
Marital Status, n (%)				0.57^c
Divorced	1 (4.2)	1 (8.3)	0 (0.0)
Married	4 (16.7)	2 (16.7)	2 (16.7)
Separated	1 (4.2)	0 (0.0)	1 (8.3)
Single (never married)	18 (75.0)	9 (75.0)	9 (75.0)

Note: ^aStudent t-test; ^bFisher’s Exact Test; ^cChi-square test.

Table 2 Clinical Characteristics of the Study Participants

Variables	All Participants (n=24)	Study Groups		p value^b
		Music Therapy (n=12)	Waitlist Control (n=12)
Type of SCD, n (%)				0.30
HbSS	17 (70.8)	7 (58.3)	10 (83.3)
HbSC	3 (12.5)	1 (8.3)	2 (16.7)
HbSβ^+thal	2 (8.3)	2 (16.7)	0 (0.0)
HbSβ^0thal	1 (4.2)	1 (8.3)	0 (0.0)
HbSdeltaβ^0thal	1 (4.2)	1 (8.3)	0 (0.0)
Medical conditions, n (%)
AVN hips	9 (37.5)	6 (50.0)	3 (25.0)
AVN shoulders	5 (20.8)	4 (33.3)	1 (8.3)
H/o acute chest syndrome	14 (58.3)	6 (50.0)	8 (66.7)
H/o CVA	4 (16.7)	1 (8.3)	3 (25.0)
Iron overload	13 (54.2)	5 (41.7)	8 (66.7)
Leg ulcers	1 (4.2)	1 (8.3)	0 (0.0)
Priapism	3 (12.5)	2 (16.7)	1 (8.3)
Current SCD Treatment, n (%)				0.86
Chronic blood transfusions	11 (45.8)	5 (41.7)	6 (50.0)
Hydroxyurea	8 (33.3)	4 (33.3)	4 (33.3)
None	5 (20.8)	3 (25.0)	2 (16.7)
Chronic pain classification^a, n (%)				0.62
1) without contributory complications	13 (54.2)	6 (50.0)	7 (58.3)
2) with contributory complications	5 (20.8)	2 (16.7)	3 (25.0)
3) with mixed pain types	6 (25.0)	4 (33.3)	2 (16.7)
Opioids prescribed (MME/D)				0.44
< 50, n (%)	11 (45.8)	4 (33.3)	7 (58.3)
50–100, n (%)	6 (25.0)	4 (33.3)	2 (16.7)
>100, n (%)	7 (29.2)	4 (33.3)	3 (25.0)
Median (range)	63.2 (0–216)	82.5 (15–170)	40.6 (0–216)

Notes: ^aChronic pain classification according to AAPT Diagnostic Criteria for Chronic Sickle Cell Disease Pain. 1) Chronic SCD pain without contributory disease complications is used if there is no evidence of contributory SCD complications on the basis of either clinical signs (eg, presence of leg ulcers) or test results (eg, imaging abnormalities). 2) Chronic SCD pain with contributory disease complications should be used if there is evidence of contributory SCD complications on the basis of clinical signs or test results. 3) Chronic SCD pain with mixed pain types should be used if there is evidence of contributory SCD complications (eg, avascular necrosis) on the basis of clinical signs or test results and there is pain also occurring in unrelated sites (eg, arms, back, chest, or abdominal pain). ^bChi-square test.

Table 3 Daily Pain Scores of the Study Participants

Variables		All Participants (n=24)		Music Therapy (n=12)		Waitlist Control (n=12)
Variable	Study Period	# of Scores (Mean)	Value of Scores (Mean ± SD)	# of Scores (Mean)	Value of Scores (Mean ± SD)	# of Scores (Mean)	Value of Scores (Mean ± SD)
Pain Intensity	Baseline	19.67	4.97 ± 2.31	20.67	5.35 ± 2.26	18.67	4.58 ± 2.38
	Follow-up	20.05	4.75 ± 2.66	18.33	4.78 ± 2.75	22.10	4.70 ± 2.69
Maximum Daily	Baseline	12.46	5.34 ± 2.25	13.08	5.72 ± 2.20	11.83	4.95 ± 2.33
Pain Intensity	Follow-up	12.05	5.07 ± 2.72	11.17	5.08 ± 2.79	13.10	5.07 ± 2.79
How Much Pain	Baseline	7.54	5.02 ± 2.01	8.00	5.23 ± 2.14	7.08	4.81 ± 1.94
Got in the Way	Follow-up	8.45	4.15 ± 2.23	7.55	4.19 ± 2.56	9.56	4.09 ± 1.91
Effects of	Baseline	8.52	4.95 ± 2.39	9.08	5.87 ± 2.37	7.91	3.95 ± 2.09
Pain on Sleep	Follow-up	8.45	4.81 ± 2.64	7.64	4.77 ± 3.01	9.44	4.86 ± 2.28
Effects of	Baseline	7.83	5.42 ± 2.20	8.08	5.13 ± 1.81	7.55	5.74 ± 2.61
Pain on Mood	Follow-up	8.35	4.50 ± 2.20	7.45	4.33 ± 1.68	9.44	4.71 ± 2.80

Figure 3 Participant flow chart.

Abbreviations: MT, music therapy; WLC, waitlist control.

Table 4 Themes and Representative Quotes from Music Therapy Participants

Participant Information				Theme/Quote
		Self-Efficacy		Learning new self-management skills
Age	Sex	Pre	Post
38	F	25.0	39.0	“Music Therapy, it taught me a lot. Taught me how to breathe when I need to breathe, just space everything out when I need to space everything out, distance myself from drama and stuff like that … I can control my anger better now than before I had this music session, because before I had this session, I was just, I would be so angry to the point where I did not know how to control it.”
21	F	26.0	32.0	“You start learning how to manage things yourself, doing certain things become easier. So but using some of the therapy and the option that he gave me, I would be able to like do more chores around the house like faster, ‘cause I’d be listening to this, or breathing and just my mind on something else while I am cleaning up, and I would not really think about me and my bad knees.”
35	F	33.0	35.0	“It just, it kind of makes me take the time to just sit back and think about something different, or like I said, when I am hurting, maybe, maybe it’s an alternative in the stretching, or if it does not work, it does not work, but at least I had some time to myself to try to figure it out, or instead of taking more medicine, at least I tried something different.”
31	F	26.0	27.0	“It helped to, yes, to calm down sometimes when I’m really like angry or I’m just you know not feeling good about always being in pain, you know. I would say sometimes it helped me, reassuring me.”
34	M	25.0	40.0	“I use it like when I was stressed, or just thinking about the workload that I had, I would just pause for 15 to 30 minutes and do the exercise, you know. Normally when the pain comes, the first emotion you feel besides the pain is frustration. Anger and frustration, you know like ‘Aw man, I’m in pain again. I have to cancel whatever I had planned today.’ So like instead of doing that, I would try to just stay calm and not let the pain overwhelm me, and I’d try to use the breathing exercise or the music or something like that to hopefully decrease the pain enough where I can still function.”
		Pain Interference		Improved ability to cope with pain
Age	Sex	Pre	Post
47	F	61.3	59.7	“I noticed when I use some of the Music Therapy techniques, I can handle the pain a little better than usual … overall, it had made an impact on my ability to cope with my pain.”
29	M	49.2	50.2	“It did not decline all my pain, but it decreased it from … let us say my pain was a 7 or 8. It would decrease it to like a 3 or 2, to where I could manage it at home, and I did not have to go deal with the ER, So anything that can save a trip from the ER, I am all go for.”
34	M	62.7	55.7	“I think that music is a great way to take your mind off of pain, and you know like instead of everyone just going to ‘Oh I’m in pain. I have to take a pill,’ you know like ‘I have to take medicine, medicine, medicine,’ you know like there are other ways to decrease the pain or take your mind off of it, and music is one of them. So music does help.”
35	F	66.7	62.7	“When you can deal with something in an alternative way and it actually becomes helpful, the way you look at the pain itself, your perception becomes a little different simply because … Like I can say, ‘Oh my god, my head is hurting really, really bad,’ and for your average person, the first thing to do was to take some aspirin or some Tylenol, but if you learn ways to deal with the cause of the headache and not the headache itself, then the way you view the headache is gonna be overall different because you look past just the pain itself. You are looking at what caused it. That’s how it helped me. When you look at your triggers, you are looking at how to deal with it, other than just B-line straight for the medicine cabinet.”
28	F	75.6	66.7	“If I was having pain and I would do the Music Therapy sessions, then I’d know my pain would be decreased not only because of the pain medicine, but it would decrease even more, on top of that because I am not only just taking pain medicines. I am doing that in conjunction with the Music Therapy.”
30	F	61.3	55.7	“You know like I try to take my mind off of it, and it’s easier to like lose yourself listening to music, you know, interacting with things that’s doing music, definitely if you like music. I love music, so it just helps me a lot. It keeps you focused on other things than being in pain. So yes, it helps me a lot.”

Table 5 Self-Efficacy and Quality of Life Scores of the Study Participants

Variables (Mean ± SD)		All Participants (n=24)	Study Groups
			Waitlist Control (n=12)	Music Therapy (n=12)	p value^a	Effect Size d (95% CI)
Self-Efficacy	Pre	28.17 ± 5.14	28.25 ± 5.34	28.08 ± 5.16	0.939
(SCSES)	Post	30.63 ± 5.95	33.67 ± 4.68	27.58 ± 5.66
	Change	2.46 ± 5.69	5.42 ± 5.43	−0.50 ± 4.38	0.008	1.20 (0.33 to 2.07)
PROMIS	Pre	40.43 ± 6.92	36.27 ± 3.58	44.58 ± 7.05	0.001
Physical	Post	42.26 ± 6.84	39.69 ± 6.31	44.83 ± 6.60
Function	Change	1.84 ± 6.88	3.43 ± 5.87	0.25 ± 7.69	0.27	0.47 (−0.35 to 1.28)
PROMIS	Pre	55.66 ± 9.00	54.34 ± 9.50	57.10 ± 8.62	0.48
Anxiety	Post	55.79 ± 8.11	54.89 ± 9.04	56.68 ± 7.35
	Change	−0.21 ± 7.21	0.55 ± 8.54	−1.04 ± 5.71	0.61	0.22 (−0.58 to 1.02)
PROMIS	Pre	55.55 ± 9.59	53.43 ± 7.90	57.68 ± 10.96	0.29
Depression	Post	54.17 ± 7.81	53.45 ± 8.73	54.96 ± 6.99
	Change	−1.36 ± 8.78	0.02 ± 10.77	−2.85 ± 6.11	0.45	0.33 (−0.48 to 1.13)
PROMIS	Pre	55.03 ± 5.94	57.23 ± 6.71	52.83 ± 4.27	0.069
Fatigue	Post	53.96 ± 8.52	53.67 ± 6.29	54.25 ± 10.58
	Change	−1.07 ± 7.43	−3.56 ± 4.29	1.42 ± 9.14	0.102	−0.70 (−1.52 to 1.27)
PROMIS	Pre	58.03 ± 8.30	60.52 ± 7.02	55.54 ± 9.02	0.146
Sleep	Post	59.60 ± 9.11	59.03 ± 10.00	60.18 ± 8.53
Disturbance	Change	1.57 ± 6.78	−1.49 ± 6.68	4.63 ± 5.58	0.023	−0.99 (−1.84 to −0.15)
PROMIS	Pre	45.44 ± 6.52	43.93 ± 6.17	46.95 ± 6.78	0.26
Social Roles	Post	47.41 ± 5.16	47.67 ± 5.88	47.16 ± 4.57
Activities^b	Change	1.98 ± 6.57	3.74 ± 5.22	0.21 ± 7.49	0.194	0.55 (−0.27 to 1.36)
PROMIS	Pre	60.15 ± 6.56	62.65 ± 6.42	57.66 ± 5.94	0.061
Pain	Post	61.25 ± 4.55	60.55 ± 5.68	61.96 ± 3.15
Interference	Change	1.10 ± 6.74	−2.10 ± 4.68	4.30 ± 7.12	0.016	−1.06 (−1.92 to −0.21)
ASCQ-Me	Pre	49.95 ± 8.42	50.86 ± 7.56	49.04 ± 9.45	0.61
Emotional	Post	49.54 ± 7.07	51.07 ± 6.43	48.01 ± 7.62
Impact	Change	−0.41 ± 8.04	0.21 ± 8.31	−1.03 ± 8.09	0.71	0.15 (−0.65 to 0.95)
ASCQ-Me	Pre	45.77 ± 6.56	46.47 ± 7.78	45.08 ± 5.34	0.62
Pain Impact	Post	45.81 ± 6.46	47.27 ± 7.38	44.35 ± 5.30
	Change	0.04 ± 6.29	0.80 ± 6.83	−0.73 ± 5.90	0.56	0.24 (−0.56 to 1.04)
ASCQ-Me	Pre	47.92 ± 7.32	44.12 ± 6.94	51.73 ± 5.67	0.008
Social	Post	47.27 ± 6.34	47.08 ± 6.43	47.45 ± 6.53
Functioning^c	Change	−0.65 ± 7.71	2.97 ± 6.91	−4.28 ± 6.93	0.018	1.05 (0.19 to 1.90)
ASCQ-Me	Pre	47.98 ± 8.25	47.09 ± 9.46	48.87 ± 7.14	0.61
Sleep	Post	47.49 ± 7.09	48.32 ± 7.49	46.66 ± 6.89
Impact	Change	−0.49 ± 5.29	1.23 ± 5.60	−2.21 ± 4.54	0.113	0.68 (−0.15 to 1.50)

Notes: ^aStudent t-test for independent groups; ^bAbbreviation for Ability to Participate in Social Roles and Activities; ^cAbbreviation for Social Functioning Impact; Bold text indicates statistically significant result.