Barriers and facilitators to the timely diagnosis of endometriosis in primary care in the Netherlands

Abstract

Background Endometriosis is an invalidating gynaecological condition in women of reproductive age, and a frequent cause of infertility. Unfortunately, the condition is characterized by a long interval between onset of symptoms and diagnosis. GPs in the Netherlands are educated to provide basic gynaecological care and serve as gatekeepers for specialist medical care. Therefore, it is of great importance that they recognize signs and symptoms possibly caused by endometriosis to initiate adequate actions. Objective The main objective of this study was to identify barriers and facilitators to the timely diagnosis of endometriosis from the GPs’ perspective. Methods Semi-structured focus group discussions with GPs were organized throughout the Netherlands. The participants were encouraged to brainstorm about their perspective on daily practice regarding endometriosis and suggestions for interventions to enable early diagnosis and treatment. Analysis was based on grounded theory methodology. Results Forty-three GPs participated in six focus groups. Analysis of the transcripts revealed relevant determinants of practice in four main themes: professionals’ experience and competence, patient characteristics, guideline factors and professional collaboration. A lack of knowledge and awareness appeared to result in a low priority for establishing the diagnosis of endometriosis, especially in young women. Infertility, patient engagement and a recent serious case or training facilitated referral. Conclusion Several factors in daily primary health care contribute to the diagnostic delay in endometriosis. Future interventions to reduce this delay may be aimed at increasing awareness by means of education, incorporating the subject into national clinical guidelines and improvements in interdisciplinary collaboration.

Navigating possible endometriosis in primary care: a qualitative study of GP perspectives

“…Focus groups with GPs, also in the Netherlands reported lack of knowledge and training about endometriosis was a potential barrier to referral, and also identified GPs uncertainty about the benefits of referral, notably for younger women. The study authors concluded there was a "low sense of urgency for timely diagnosis" 26 , whereas in our study, GPs identified a number of significant advantages of having a diagnosis, for themselves and their patients, albeit underpinned by known uncertainties. While the value of continuity of care and therapeutic relationships when supporting women with endometriosis has been previously documented in work with clinicians 27 , we did not find other studies describing how GPs characterise the process of shared decision-making in this clinical context.…”

Relationship between onset of symptoms and diagnostic delay in women with endometriosis

“…A recent publication from the Netherlands underlines the inequality of treatment of women: the authors found that general practitioners are reluctant to refer women for further diagnosis of possible endometriosis-related complaints, especially if they are very young [21]. Caught in a recurrent cycle of pain, the cause of which cannot be determined, some of the patients tried to find information about the problem by doing their own research in order to be able to be more specific (goal-oriented) when speaking to the physicians they consulted.…”

“…(2020) Vol 1, Issue 1 wrong treatment and higher costs. Recent quantitative [16][17][18] and qualitative studies [12,[19][20][21] have provided first evidence of the possible causes.…”

Experiências das mulheres quanto às suas trajetórias até o diagnóstico de endometriose

“…Apesar da homogeneidade da amostra, ela reflete a subjetividade e as relações interpessoais desse grupo específico, corroborando o perfil socioeconômico identificado nos contextos nacional e internacional. 8 Dessa forma, o ponto de saturação ocorreu tanto pelo volume de dados quanto pelo nível de detalhamento e aprofundamento sobre as trajetórias dessas mulheres, demonstrando as diversas dimensões do objeto de pesquisa. 12 A captação de potenciais participantes do estudo ocorreu por meio de uma rede social de acesso via on-line.…”

“…7 Além disso, a caracterização sociodemográfica dessas mulheres permitiu identificar uma predominância da população branca e com alto grau de escolaridade, o que contribui para compreender que o acesso ao diagnóstico de endometriose pode ser um processo bastante excludente. 8 A demora quanto ao diagnóstico deve ser tratada como um ponto de intensa preocupação, uma vez que pode resultar em um tratamento tardio ou inadequado, bem como desenvolver desfechos mais graves, como um maior risco de infertilidade e lesões em órgãos subjacentes. Os sinais e os sintomas da endometriose, quando não gerenciados, afetam diretamente a qualidade de vida das mulheres e contribuem para a perda de produtividade ou a incapacidade de desempenhar atividade laboral.…”