Journal of the European Academy of Dermatology and Venereology : JEADV · 2020
The Lady Garden Club: supporting women with vulval conditions and their partners.
СтатьяНазвание и аннотация: Перевод в очереди
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Akel R, Cohen C E, Fuller C
Аннотация
BACKGROUND: Vulval conditions have been shown to have a significant impact on patients' quality of life and can affect their relationships. The Lady Garden Club (LGC) is peer support group that was set up by patients with vulval conditions and is supported by the vulval clinic physicians at Chelsea & Westminster Hospital.
OBJECTIVES: Our aim was to assess the efficacy of this peer support group and the physician contribution to it. We also aimed to assess potential unmet needs of partners, which in turn could affect our patients' experience and quality of life.
METHODS: An anonymized online Survey Monkey link was sent to LGC members. Questions included a Dermatology Life Quality Index (DLQI) section.
RESULTS: The response rate was 60% (26). Over half (54%) were members >2 years. Diagnoses included 85% (22) lichen sclerosus, lichen planus, 8% (two) eczema/psoriasis, warts 8% (two), vulval cancer 4% (one) and vulvodynia 8% (two). All valued a vulval specialist leading the LGC. Women benefitted from: open member questioning (84%), learning from others (81%), self-help tips (81%), more patient information (77%), latest research updates (69%), sharing concerns and fears (65%), sharing personal experiences (62%), peer support network (62%), and discussion about sex and relationships (35%). A third used the buddy system by phone, 19% soon after diagnosis. The average DLQI was 6.84 (range 0-25). Half reported depression and 59% anxiety. Two thirds (68%) felt women with other vulval conditions would benefit from the LGC. Over half (54%) felt there was an unmet need for helping partners understand their genital conditions.
CONCLUSION: The survey concluded that the LGC provides several additional benefits to women with vulval conditions, within a safe forum led by a vulval specialist. It also demonstrated a potential unmet need to support women's partners that can now be addressed.
OBJECTIVES: Our aim was to assess the efficacy of this peer support group and the physician contribution to it. We also aimed to assess potential unmet needs of partners, which in turn could affect our patients' experience and quality of life.
METHODS: An anonymized online Survey Monkey link was sent to LGC members. Questions included a Dermatology Life Quality Index (DLQI) section.
RESULTS: The response rate was 60% (26). Over half (54%) were members >2 years. Diagnoses included 85% (22) lichen sclerosus, lichen planus, 8% (two) eczema/psoriasis, warts 8% (two), vulval cancer 4% (one) and vulvodynia 8% (two). All valued a vulval specialist leading the LGC. Women benefitted from: open member questioning (84%), learning from others (81%), self-help tips (81%), more patient information (77%), latest research updates (69%), sharing concerns and fears (65%), sharing personal experiences (62%), peer support network (62%), and discussion about sex and relationships (35%). A third used the buddy system by phone, 19% soon after diagnosis. The average DLQI was 6.84 (range 0-25). Half reported depression and 59% anxiety. Two thirds (68%) felt women with other vulval conditions would benefit from the LGC. Over half (54%) felt there was an unmet need for helping partners understand their genital conditions.
CONCLUSION: The survey concluded that the LGC provides several additional benefits to women with vulval conditions, within a safe forum led by a vulval specialist. It also demonstrated a potential unmet need to support women's partners that can now be addressed.