A Novel Questionnaire-based Approach for Assessing Endometriosis Pain

A two-round modified DELPHI survey was used to develop a comprehensive questionnaire for appraising endometriosis-associated pain.

Key Points

Highlights:

• This paper identified and measured endometriosis-associated pain symptoms using self-administered questionnaires given to both patients and physicians.

Importance:

• In order to assess the effectiveness of various treatments, it is imperative to utilize a trustworthy method of pain assessment. The pain scales that returned do not take into account the heterogeneous nature of endometriosis-associated pain symptoms.

What’s done here?

• The study utilized a two-round modified Delphi survey.
  • The Delphi method refers to a procedure that results in a consensus with regards to a particular topic.
  • The panelists' rate statements that make up the questionnaire and comments, then their answers are used to create the questions for the next round.
  • This study modified the Delphi technique by a face-to-face meeting of the panelists followed the questionnaire, to ensure that the decision-making process can be enhanced and the language used in each state can be clarified.
• The statements found in the first questionnaire were formed based on previous qualitative research by:
  • The researchers recruited endometriosis patients with different types of endometriosis.
  • The researchers conducted in-person focus group discussions that concentrated on words and sentences that can be used to describe endometriosis-associated pain symptoms.
  • The 48 statements that were identified were organized into five general categories.
• The survey was administered to a panel of endometriosis patients and physicians.
  • The clinicians selected were multi-disciplinary experts in the field of endometriosis.
  • The endometriosis patients on the panel were of a broad range of experience levels and ages.
• The first-round questionnaire was emailed to the panelists and required them to rate, on a 9-point scale, the 48 statements for two aspects:
  • Diagnosis validity, which is the idea that the statement in question has the characteristics required to diagnose endometriosis correctly.
  • Clarity, which is the idea that the statement in question is written in a way that is unambiguous for both the patient and the healthcare provider.
  • This step also allowed panelists to add statements and comment on the existing statements.
• The second-round questionnaire was mailed to those who answered the first-round survey. They were given the panel responses from the first-round and asked to re-rate each of the statements.
• The final accepted set of statements were required to have median diagnosis validity, and clarity ratings that fell in the top tertile, defined as ratings in the 7-9 range, as well as a 75% agreement of the evaluation, belongs in the top tertile.
• The final set of questions was translated into English from French.

Key results:

• 76 endometriosis experts were invited to partake in this study. 56 experts, 33 patients, and 23 clinicians responded to the first-round questionnaire and 40 experts, 20 patients, and 20 clinicians, responded to the second-round questionnaire. This exceeds the study’s initial aim to have at least 30 participants.
• After the first round, there were 28 statements to be rated. The second round produced 11 statements.
• The physical meeting after the two rounds of questionnaires produced a final questionnaire that includes 21 questions. These questions were organized into four distinct categories:
  • spontaneous pelvic pain and dysmenorrhea (pain experienced during menstruation)
  • dyspareunia (pain experienced during coitus)
  • painful bowel symptoms
  • Other symptoms

Limitations of the study:

• The authors state that a limitation of the study lies in the fact that it was difficult to accurately assess the spectrum of the disease in the patients on the panel because some of the patients were enrolled from a patient association. The researchers could not determine the location and type of endometriosis in these patients, which can influence the symptoms experienced by the patient.
• Another limitation cited by the researchers is the possibility of Physician sensitization.
• The study was conducted in one geographical location, within France, and so the results of the study may not be applicable at a global level.

Lay Summary

Fauconnier et al. recently published a paper in the Journal of Gynecology Obstetrics and Human Reproduction titled “A self-administered questionnaire to measure the painful symptoms of endometriosis: Results of a modified DELPHI survey of patients and physicians” that seeks to develop a questionnaire-based method to assess endometriosis-related pain. This study was created because currently used methods of pain assessment are not as effective as they should be.

The research process consisted of many parts. In the first part, the researchers recruited endometriosis patients and held in-person focus groups to develop a questionnaire to be used in the second part of the experiment. 48 statements were ultimately identified that were then organized into five different categories. The next part of the investigation consisted of two-round modified DELPHI surveys administered to various individuals with endometriosis and multi-disciplinary physicians that typically treat endometriosis. The first-round questionnaire required participants to rate the 48 statements on a 9-point scale concerning diagnostic validity and clarity. Participants could also add statements and comment on the existing ones as they see fit. At the end of the first-round questionnaire, there were 28 statements. The second-questionnaire was created based on the results of the first-questionnaire where participants were asked to re-rate the statements. The second-round survey narrowed the list of statements to 11. After the second questionnaire, a select group of patients are participants were invited to a face-to-face meeting where they discussed all the statements. The physical meeting resulted in a comprehensive list of 28 questions that were further organized into four categories: spontaneous pelvic pain and dysmenorrhea (pain experienced during menstruation), dyspareunia (pain experienced during coitus), painful bowel symptoms, and other symptoms. The final set of questions was translated from French to British English.

This study developed an extensive questionnaire that can be used by patients and doctors alike to assess pain in the patient. It can also be used in the future for the studies to examine a treatment’s ability to manage endometriosis-associated pain.

Research Source: https://www.ncbi.nlm.nih.gov/pubmed/29133195