Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest or importance and go more in-depth. In this story we will talk about the details of the study and explain why it’s important, who will be impacted, and more.

If you read our short form research stories and find yourself wanting to learn more, you’ve come to the right place.

This week’s study is…

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

We previously published about this research in a story titled “Can Music Therapy Relieve SCD Pain?” which can be found here. This study was first published in the scientific journal Journal of Pain Research. You can view the abstract of the study here.

This research was associated with University Hospitals Connor Whole Health.

What Happened?

Sickle cell disease is a rare illness that can have drastic impacts on a patient’s quality of life. This is especially true during episodes of “pain crisis” or “sickle cell crisis,” which occur when the affected person’s sickle shaped blood cells cause obstructions in the small blood vessels. The pain is often described as excruciating:

“Feels like someone’s constantly stabbing you, but you’re not dying.” – Tasha Taylor, 40, patient undergoing treatment at University Hospitals Connor Whole Health

Music therapist Samuel Rogers-Melnick, MT-BC, along with other researchers, conducted a study for the past decade in which music therapy approaches were used with sickle cell disease patients in order to evaluate its effect on their quality of life. The approach involved a six-part music therapy program which included active music making, music-based breathing exercises, imagery, and progressive muscle relaxation. A total of 24 patients participated in the study. Music therapy was tailored to each patient’s preferred musical genres.

The patients were either assigned to the program or a wait list control group and were required to fill out electronic pain diary entries every day. The also completed quality of life evaluations before and after the study. The patients who participated in the music therapy were also interviewed afterwards. The study found that patients who received music therapy experienced improvements in social function and self-efficacy. Meanwhile, interference from pain and sleep disturbances were reduced.

Rodgers-Melnick explains the effect to be a result of new self-care skills that the patients had learned from the program, which helped improve the perception of their own pain management. In the home environment, patients could use the music therapy exercises to reduce the burden of their pain. Common approaches for managing sickle cell pain crises include pain relieving drugs (including opioids) and hydration. While he explains that approaches such as music therapy are not necessarily a replacement for these methods, integrative approaches such as music therapy may allow for pain to be managed in more comprehensive manner.

About Sickle Cell Disease

Sickle cell disease is a genetic, inherited disorder of the blood. This disorder is characterized by an abnormality affecting hemoglobin, which is found in red blood cells and is responsible for carrying oxygen. The abnormality causes blood cells to lose their typical circular shape and instead take on an elongated, sickle-like appearance. This is caused by a genetic mutation that may have arisen as a defense against malaria, although this benefit only occurs in people with sickle cell trait, not the disease. Symptoms begin to appear at around six months old and include swelling of the hands and feet, stroke, bacterial infections, and acute episodes of severe pain termed sickle cell crisis. Severity of disease varies, but these attacks can result in serious declines in health and organ damage. Treatment is mostly symptomatic, but bone marrow transplant has been curative in children. The disease most frequently affects people of African ancestry. Life expectancy is between 40 and 60. To learn more about sickle cell disease, click here.

Why Does it Matter?

Pain is an enormous factor in quality of life. People that experience long term pain, severe pain, or chronic pain, are at much greater risk of mental disorders such as depression or anxiety, and while pharmacological methods for managing pain can be very effective, impacts still vary from person to person and there are still many people, including sickle cell disease patients, who face pain as a regular aspect of their lives.

With that being said, the findings from this study should still be considered preliminary. The authors conclude that while it’s clear that music therapy can help adult patients improve their quality of life and manage their pain, further research in the clinical setting is still recommended in order to demonstrate the efficacy of music therapy more thoroughly:

“We plan to continue this research in settings outside University Hospitals to determine whether demonstrated improvements persist at 6 months and 1 year after intervention; whether the use of music exercises influences the use of pain medication; whether early intervention with music therapy influences the development of chronic pain in youth with sickle cell disease; and the comparative effectiveness of music therapy virtually vs. in person.” – Samuel Rogers-Melnick, Music Therapist