Today let’s focus on a study that came out of Turkey. It’s entitled “What do lymphedema patients expect from a treatment and what do they achieve? A descriptive study”. This study is interesting to me because it aims to examine the treatment needs and benefits from the patients’ perspective.
Even though the title of the paper only mentions lymphedema, there were also lipedema and lipo-lymphedema patients included in this study. It was published in the peer-reviewed periodical Journal of Vascular Nursing in March 2022.
Let’s take a look at the participants who were enrolled and the methods that the researchers employed to perform this study.
Who participated in this study?
Demographic information and assessments were gathered on all of the participants. All participants had a diagnosis of lymphedema, lipedema, or lipo-lymphedema. Patients who were diagnosed by a doctor and who wanted treatment or had treatment in the past were included in this study. Although 102 patients were enrolled in the study, analysis was only performed on 81 of the participants.
Thirty-five (43.2%) participants were diagnosed with primary lymphedema, 40 (49.4%) with secondary lymphedema, 3 (3.7%) with lipedema, and another 3 (3.7%) with lipo-lymphedema. Although only 6 participants had either lipedema or lipo-lymphedema, a total of 22 (27.3%) were affected in both legs, which increases the applicability to women with lipedema.
Almost 78% of the participants were female. The average age was 47 years and the average weight was 177 lbs or 80 kgs. The average BMI was 30, which suggests that most participants were overweight or obese.
The past treatment experienced by most participants in the study was a standard protocol of Complete Decongestive Therapy in two phases. Phase 1 included manual lymph drainage, skin care, compression bandaging, and decongestive exercise for 3 to 4 weeks, depending on the severity of their condition. Phase 2, or the maintenance phase, generally included compression garments, self-MLD, a pneumatic compression pump, exercise, and self-care training.
What were the measurements used in this study?
The researchers used the Patient Benefit Index-Lymphedema, a diagnosis-specific self-report survey in two parts:
- Patient Needs Questionnaire – The patients scored their own treatment needs according to their importance from 0, “not at all important” to 4, “very important.”
- Patient Benefit Questionnaire – The patients then scored the perceived benefits of their treatments from 0, “not at all beneficial” to 4, “very beneficial.”
Participants could also respond “not applicable” to any of the items.
Here’s a sample of some of the items on the Patient Benefit Index that they were asked to rate:
- To be free of pain
- To experience less swelling and tension
- To gain more self-assurance and self-esteem
- To experience no skin discomfort
- To be less restricted in your ability to move around
- To have no fear that the disease will become worse
- To find a clear diagnosis and therapy
If the participant was newly diagnosed and about to have treatment, they would complete the Needs Questionnaire prior to treatment and the Benefit Questionnaire after treatment. Those who had been treated in the past relied on recall and completed both sections of the Patient Benefit Index at one time.
What were the results?
Here are the results the researchers found in this study.
Items that were rated as the most important needs are:
- To find a clear diagnosis and therapy
- To experience no skin discomfort
- To experience less swelling and tension
Items that were rated as the least important needs are:
- To feel more attractive (this was also most often marked as N/A)
- To be able to better accept the condition
- To be asked less often about [my disorder]
Items that were rated as the most important benefits of therapy are:
- To have no fear that the disease will become worse
- To experience less swelling and tension
- To experience no skin discomfort
Items that were rated as the least important benefits of therapy are:
- To have fewer out-of-pocket treatment expenses
- To need less time for treatment
- To get prescriptions for treatments more easily
What were the conclusions of the authors?
The authors report that these results demonstrate that “patients want to get clear diagnosis and treatment for their symptoms such as swelling, tension, and skin discomfort” and the treatment they receive does alleviate these symptoms. Unfortunately, many patients are misdiagnosed or diagnosis is delayed. Accurate, early diagnosis can prevent progression and improve the management of these conditions.
The authors also conclude that since the mean Patient Benefit Index score was just under 3 (2.88) out of a possible 4, this indicates that patients perceive that they gain a lot of benefits from therapy.
Another conclusion is that although therapy for these conditions can be expensive, cost containment is not a need or expectation because the item most often rated as zero was “to have fewer out-of-pocket treatment expenses.” The authors suggest that this conclusion may have been influenced by the fact that those patients who did not participate in this study because they couldn’t afford the treatment, eliminated the chance that this item would be rated as important.
Takeaways
This study is important for women with lipedema because it adds to our understanding of patients’ perceptions of treatment and whether or not their needs are being met in treatment. It also emphasizes the need for early and accurate diagnosis and treatment.
This was recommended to me by Gayle Rockelli, so thank you, Gayle, for suggesting that I look at this paper. It’s interesting to learn about the treatment needs of patients with lymphedema, lipedema, and lipo-lymphedema from their own perspective. Research that focuses on the needs and expectations of patients is important and helpful. When the understanding of their needs becomes wider and deeper, there is a better chance that we can improve and enhance our treatment and management of these conditions.
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~ Leslyn Keith, OTD, CLT-LANA
Board President, Director of Research | The Lipedema Project