RESUMEN
OBJECTIVES: Despite the need and uptake of mental health support by women with endometriosis, no research to date has explored their experience of psychological therapy. We aimed to understand the factors that predict engagement in psychological therapy by Australian women with endometriosis and to qualitative explore their experience of psychological support. DESIGN: Mixed-methods design. METHODS: A total of 200 women with self-reported endometriosis were recruited from the community. We explored; (1) the demographic and clinical predictors of engagement in psychological therapy, (2) the psychological approaches that seem most valuable to women in the management of endometriosis and (3) their experience engaging in psychological therapy for endometriosis. RESULTS: Nearly half of women reported to have seen a psychologist within the past year, particularly for pain. Younger age (OR, .94; 95% CI, .886-.993), depressive symptoms (OR, 1.05; 95% CI, 1.002-1.099), and working part time compared to full time (OR, 2.17, 95% CI, 1.012-4.668), increased the likelihood of engaging in psychological therapy. Template thematic analysis identified three themes; (1) endometriosis and pain have multi-faceted psychological effects, (2) psychological support is sought to adjust and live with endometriosis and (3) there are helpful and unhelpful psychological tools for women with endometriosis. CONCLUSIONS: Our findings support the use of psychological therapy in the management of endometriosis, and the need for psychological therapy to acknowledge the chronicity and impact of symptoms, to enlist multidisciplinary support and to consider alternative options. Further advocacy is required to educate women on the benefits of psychological therapy for endometriosis.
Asunto(s)
Adaptación Psicológica , Endometriosis , Humanos , Femenino , Endometriosis/psicología , Endometriosis/terapia , Adulto , Australia , Psicoterapia/métodos , Persona de Mediana Edad , Investigación Cualitativa , Depresión/terapia , Depresión/psicología , Adulto JovenRESUMEN
The present study sought to understand similarities and differences in the experiences of women with mild, moderate and severe menstrual pain. Women aged 18-50 years were recruited from the community between May and July 2019 (n = 624). Participants were asked to rate their menstrual pain severity using a Numerical Rating Scale categorised into mild (scores 1-4), moderate (scores 5-7), and severe dysmenorrhea (scores 8-10) and respond to three open-ended questions about the impact of menstrual pain. Inductive template thematic analysis was used to understand patterns of meaning and compare and contrast the experience of menstrual pain across severity. Three themes were derived, including 'Dysmenorrhea is more than menstrual pain;' 'It puts a hold on lives;' and 'Lack of health-related information.' Women across all pain severities reported disabling symptoms, disrupted physical activity and the need for education and treatment. Those experiencing mild pain reported relatively brief symptoms and minor impacts, whilst those with moderate, and especially severe pain reported debilitating symptoms and extensive impacts. Supportive care including education is needed for all menstruating people.
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Dismenorrea , Calidad de Vida , Femenino , Humanos , Masculino , Menstruación , Escolaridad , Dimensión del DolorRESUMEN
Psychological factors of emotional distress and cognition have an important role in the understanding and management of endometriosis; however, their temporal relationship with key pain variables is not fully understood. This exploratory study sought to establish the temporal relationship between psychological and pain-related factors in a 12-month prospective study of 208 Australian women with endometriosis. Participants, aged 18-50 years and living in Australia, were recruited via social media and completed baseline (May 2019) and 12-month follow-up (June 2020) surveys. Participants who reported a diagnosis of endometriosis and menses in the past 12 months were included in the study. Structural equation modelling was used to determine the temporal effects of psychological and pain-related factors in endometriosis. In a covariate-adjusted model, baseline emotional distress was the only variable to predict pain catastrophizing (ß = .24, p < .01), functional pain disability (ß = .16, p < .05) and concomitant emotional distress (ß = .55, p < .001) 12 months later, adjusting for age and chronic illness. Women who exhibit symptoms of distress may be at risk of poorer psychological and physical function at 12 months. Further research is required to understand the impact of psychological management early in the disease course.
Asunto(s)
Endometriosis , Distrés Psicológico , Humanos , Femenino , Endometriosis/complicaciones , Endometriosis/diagnóstico , Endometriosis/psicología , Estudios Prospectivos , Australia , Dolor/complicaciones , Dolor/psicologíaRESUMEN
AIMS: To document the frequency of conventional and complementary treatments used by Australian women with endometriosis and the perceived efficacy of these treatments, and to qualitatively explore women's treatment satisfaction. BACKGROUND: We do not adequately understand whether Australian women with endometriosis are satisfied with their medical care. METHODS: Using a mixed-methods design, 532 women with self-reported endometriosis were recruited from the community. Participants were asked about their medication, complementary and self-care treatment use, as well as perceived efficacy on a 0 (not effective) to 10 (extremely effective) numeric rating scale, and open-ended qualitative survey items about treatment satisfaction. RESULTS: Ninety-seven percent of women used medication for pain relief (mean perceived efficacy = 5.05) and 89% used complementary/self-care strategies (mean perceived efficacy = 3.70), with medication rated as significantly more effective (P < 0.001). Content analysis of the qualitative data identified that 36% of women were dissatisfied with treatment, 34% were somewhat satisfied and 24% were satisfied. We identified qualitative themes relating to: (i) barriers to treatment, which included lack of access, stigma and disappointment with medical professionals who were perceived as uncaring, unhelpful and, in some cases, psychologically damaging; (ii) the need for holistic, interdisciplinary care; and (iii) patient knowledge, advocacy and resilience in endometriosis management. CONCLUSIONS: Our findings reveal important limitations in the current Australian healthcare model, including the need for patient-centred interdisciplinary care that treats the biopsychosocial needs of people with endometriosis, and widespread pain education, spanning medical training to community awareness.
Asunto(s)
Endometriosis , Femenino , Humanos , Endometriosis/terapia , Australia/epidemiología , Dolor , Satisfacción PersonalRESUMEN
The aim of this study was to understand the relationship between psychosocial factors, including mental health, pain cognitions and social support associated with menstrual pain severity in women with dysmenorrhea of no identified medical cause (primary dysmenorrhea; PD) and dysmenorrhea related to endometriosis. Participants included 1192 women aged 18-50 years with menstrual pain, recruited to an online cross-sectional survey in 2019. Questionnaires assessed self-reported menstrual pain severity, depression, anxiety, stress, pain catastrophizing, and social support. Women with endometriosis had significantly higher menstrual pain severity (p < 0.001) and pain catastrophizing (p < 0.001) than women with PD. Of the psychosocial factors, only pain catastrophizing (specifically, the helplessness sub-scale) predicted menstrual pain severity in each group. Overall, 36% of women with PD and 58% with endometriosis had clinically relevant levels of pain catastrophizing. Findings suggest a common psychological mechanism in women with menstrual pain, regardless of etiology. Interventions to reduce pain helplessness may be beneficial in supporting women with dysmenorrhea.
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Dismenorrea , Endometriosis , Catastrofización/psicología , Estudios Transversales , Dismenorrea/epidemiología , Dismenorrea/psicología , Femenino , Humanos , Salud Mental , Apoyo Social , Encuestas y CuestionariosRESUMEN
INTRODUCTION: Endometriosis is a debilitating chronic inflammatory condition highly burdensome to the healthcare system. The present trial will establish the efficacy of (1) yoga and (2) cognitive-behavioural therapy (CBT), above (3) education, on quality of life, biopsychosocial outcomes and cost-effectiveness. METHODS AND ANALYSIS: This study is a parallel randomised controlled trial. Participants will be randomly allocated to yoga, CBT or education. Participants will be English-speaking adults, have a diagnosis of endometriosis by a qualified physician, with pain for at least 6 months, and access to internet. Participants will attend 8 weekly group CBT sessions of 120 min; or 8 weekly group yoga sessions of 60 min; or receive weekly educational handouts on endometriosis. The primary outcome measure is quality of life. The analysis will include mixed-effects analysis of variance and linear models, cost-utility analysis from a societal and health system perspective and qualitative thematic analysis. ETHICS AND DISSEMINATION: Enrolment in the study is voluntary and participants can withdraw at any time. Participants will be given the option to discuss the study with their next of kin/treating physician. Findings will be disseminated via publications, conferences and briefs to professional organisations. The University's media team will also be used to further disseminate via lay person articles and media releases. TRIAL REGISTRATION NUMBER: ACTRN12620000756921p; Pre-results.
Asunto(s)
Terapia Cognitivo-Conductual , Endometriosis , Yoga , Adulto , Análisis Costo-Beneficio , Endometriosis/terapia , Femenino , Costos de la Atención en Salud , Humanos , Calidad de Vida , Resultado del TratamientoRESUMEN
OBJECTIVE: The COVID-19 pandemic has resulted in restrictions and social isolation measures, which carry mental health risks. Cancellation of surgery and appointments, medication shortages and fear of the virus itself may have further challenged wellbeing. We aimed to understand how COVID-19 has affected people with endometriosis. METHODS: Using a mixed methods design, we examined; 1) the impact of COVID-19 on endometriosis related healthcare, symptoms and functioning; and 2) the relationship between a measure of fear of COVID-19 and qualitative impact in 162 women with endometriosis. RESULTS: We found that 60% of women reported impact of the pandemic upon healthcare, with sub-themes documenting the difficulty of cancelled and delayed treatment, specific COVID-19 barriers, and the advantages and disadvantages of telehealth. Only 23% reported negative impact on symptoms, specifically stress; 76% reported impact on daily functioning, with sub-themes related to compromised work, social life and healthy living. A 'hidden benefits' theme revealed ways that COVID-19 had improved some women's lives, including working from home, and the opportunity for healthy lifestyle choices. Logistic regressions revealed that fear of COVID-19 significantly predicted impact themes (healthcare odds ratio = 0.93, 95% confidence interval: 0.87-0.98; symptoms odds ratio = 0.88, 95% confidence interval: 0.82-0.95; functioning odds ratio = 0.92, 95% confidence interval: 0.85-0.99). CONCLUSION: Our findings indicate the need to provide patients with supportive care during pandemic restrictions that leverage self-management strategies.