Qualitative interviews in patients with lipodystrophy to assess the patient experience: evaluation of hunger and other symptoms
Abstract Background New treatments are being evaluated for lipodystrophy; however, limited information is available on the patient experience. Results of a prior patient panel showed that hunger and temperature-related symptoms were an issue for participants. Therefore, evaluation of any changes in...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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SpringerOpen
2022-07-01
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| Series: | Journal of Patient-Reported Outcomes |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s41687-022-00486-3 |
| _version_ | 1828752516160946176 |
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| author | Susan A. Martin Robert J. Sanchez Oyebimpe Olayinka-Amao Charles Harris Sheri Fehnel |
| author_facet | Susan A. Martin Robert J. Sanchez Oyebimpe Olayinka-Amao Charles Harris Sheri Fehnel |
| author_sort | Susan A. Martin |
| collection | DOAJ |
| description | Abstract Background New treatments are being evaluated for lipodystrophy; however, limited information is available on the patient experience. Results of a prior patient panel showed that hunger and temperature-related symptoms were an issue for participants. Therefore, evaluation of any changes in these symptoms is recommended for inclusion in new treatment options. The objective of this study was to further understand the patient experience and to evaluate newly developed items of hunger and temperature regulation. Methods Individual, in-depth telephone interviews were conducted via semi-structured discussion guide. Telephone interviews were conducted with 21 US patients with generalized lipodystrophy (GLD) or partial lipodystrophy (PLD). Eligibility requirements included self-reported PLD or GLD. Interviews included open-ended concept elicitation followed by a review of newly developed items assessing hunger, temperature sensations, and patient globals. Interviews were conducted in two rounds, with the newly developed items assessing hunger revised after each round of interviews based on participant feedback. Results Results indicated that hunger-related symptoms were considered a current issue for greater than half (N = 11) of participants, and all but one reported this as an issue at some point in their lives. Specifically, participants most often reported symptoms of increased appetite and not feeling full. The cognitive debriefing process indicated that the hunger-related symptoms, temperature, and global impression of change and severity items were correctly interpreted and easily completed by the participants. While not a focus of the interviews, the concept elicitation results demonstrated that pain was a frequently reported and bothersome symptom in this patient population. Conclusions This qualitative research provided evidence to support the use of clinical outcomes assessments such as hunger and temperature-related items in clinical trials. |
| first_indexed | 2024-12-10T21:10:08Z |
| format | Article |
| id | doaj.art-681cefbd17674a17bef1b2e7abf3acc7 |
| institution | Directory Open Access Journal |
| issn | 2509-8020 |
| language | English |
| last_indexed | 2024-12-10T21:10:08Z |
| publishDate | 2022-07-01 |
| publisher | SpringerOpen |
| record_format | Article |
| series | Journal of Patient-Reported Outcomes |
| spelling | doaj.art-681cefbd17674a17bef1b2e7abf3acc72022-12-22T01:33:30ZengSpringerOpenJournal of Patient-Reported Outcomes2509-80202022-07-016111310.1186/s41687-022-00486-3Qualitative interviews in patients with lipodystrophy to assess the patient experience: evaluation of hunger and other symptomsSusan A. Martin0Robert J. Sanchez1Oyebimpe Olayinka-Amao2Charles Harris3Sheri Fehnel4RTI Health SolutionsRegeneron Pharmaceuticals, Inc.RTI Health SolutionsRegeneron Pharmaceuticals, Inc.RTI Health SolutionsAbstract Background New treatments are being evaluated for lipodystrophy; however, limited information is available on the patient experience. Results of a prior patient panel showed that hunger and temperature-related symptoms were an issue for participants. Therefore, evaluation of any changes in these symptoms is recommended for inclusion in new treatment options. The objective of this study was to further understand the patient experience and to evaluate newly developed items of hunger and temperature regulation. Methods Individual, in-depth telephone interviews were conducted via semi-structured discussion guide. Telephone interviews were conducted with 21 US patients with generalized lipodystrophy (GLD) or partial lipodystrophy (PLD). Eligibility requirements included self-reported PLD or GLD. Interviews included open-ended concept elicitation followed by a review of newly developed items assessing hunger, temperature sensations, and patient globals. Interviews were conducted in two rounds, with the newly developed items assessing hunger revised after each round of interviews based on participant feedback. Results Results indicated that hunger-related symptoms were considered a current issue for greater than half (N = 11) of participants, and all but one reported this as an issue at some point in their lives. Specifically, participants most often reported symptoms of increased appetite and not feeling full. The cognitive debriefing process indicated that the hunger-related symptoms, temperature, and global impression of change and severity items were correctly interpreted and easily completed by the participants. While not a focus of the interviews, the concept elicitation results demonstrated that pain was a frequently reported and bothersome symptom in this patient population. Conclusions This qualitative research provided evidence to support the use of clinical outcomes assessments such as hunger and temperature-related items in clinical trials.https://doi.org/10.1186/s41687-022-00486-3HungerLeptinGeneralized lipodystrophyPartial lipodystrophyPatient-reported outcomes |
| spellingShingle | Susan A. Martin Robert J. Sanchez Oyebimpe Olayinka-Amao Charles Harris Sheri Fehnel Qualitative interviews in patients with lipodystrophy to assess the patient experience: evaluation of hunger and other symptoms Journal of Patient-Reported Outcomes Hunger Leptin Generalized lipodystrophy Partial lipodystrophy Patient-reported outcomes |
| title | Qualitative interviews in patients with lipodystrophy to assess the patient experience: evaluation of hunger and other symptoms |
| title_full | Qualitative interviews in patients with lipodystrophy to assess the patient experience: evaluation of hunger and other symptoms |
| title_fullStr | Qualitative interviews in patients with lipodystrophy to assess the patient experience: evaluation of hunger and other symptoms |
| title_full_unstemmed | Qualitative interviews in patients with lipodystrophy to assess the patient experience: evaluation of hunger and other symptoms |
| title_short | Qualitative interviews in patients with lipodystrophy to assess the patient experience: evaluation of hunger and other symptoms |
| title_sort | qualitative interviews in patients with lipodystrophy to assess the patient experience evaluation of hunger and other symptoms |
| topic | Hunger Leptin Generalized lipodystrophy Partial lipodystrophy Patient-reported outcomes |
| url | https://doi.org/10.1186/s41687-022-00486-3 |
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