Introduction

Aotearoa has increasingly high levels of inflammatory bowel disease (IBD) but low rates of timely diagnosis. Despite this, the impacts of a diagnostic delay (DD) for a patient with IBD are poorly understood. It is necessary to investigate the IBD patient’s perspectives on the barriers and impacts of their DD. Previous quantitative research has been conducted to assess the implications of a DD, but qualitative research investigating patients’ perceptions is in its infancy. This study aimed to identify what diagnosed IBD patients consider the main barriers to diagnosis and the relevant impacts of DD. Understanding how a DD can contribute to various negative psychosocial impacts is essential. Ten participants with diagnosed IBD who felt they experienced a DD were interviewed to discuss their experience. Interviews were transcribed verbatim and analysed using Braun and Clarke’s (2006) reflexive thematic analysis. Four connecting themes were identified.

Lack of Awareness

First, participants articulated that IBD symptoms awareness was low among themselves and their GP. Many participants were not diagnosed until several years after repeated GP visits, with a worsened symptom severity and high levels of stress and emotional burden, where they presented to the emergency department and were finally diagnosed. As a result of this DD, participants discussed absences from work or school, career changes, or withdrawal from social interactions. The loss of productivity caused by these absences is predicted to cost around $16 million per year (Kahui et al., 2017). Further, these absences were found to exacerbate negative psychosocial impacts in participants, such as feeling psychologically burdened. These impacts of a DD are consistent with previous research and are recognised threats to an individual’s quality of life in the literature (Kahui et al., 2017; Popa et al., 2022).

Consequently, IBD unawareness led to a misdiagnosis and dismissal of symptoms which resulted in delayed diagnosis. Some participants suggested raising awareness in communities of IBD symptoms, the differences between IBD and conditions such as IBS and haemorrhoids, and when patients should consult a health physician with symptoms through public messaging and campaigns. As many people with IBD symptoms are in their youth, increasing public awareness of IBD symptoms, the seriousness of symptoms, and where to access help through social media platforms would be particularly effective. In studies of bowel-related cancers, raising public awareness was an effective method of improving help-seeking behaviour (Durkin et al., 2019).

Feelings of Dissonance

Second, participants expressed feelings of dissonance between themselves and their healthcare provider, resulting from the disagreement about symptom severity, diagnostic procedures, and management care. Resultingly, participants felt helpless and vulnerable when they or others failed to understand their condition, symptom severity, or help-seeking needs. Finally, many participants upheld a negative retrospective reflection of the diagnostic procedure, misdiagnosis, and undermining of symptom severity they experienced.

The findings produce an incentive to raise IBD awareness of diagnostic procedures to reduce delay time, with recommendations to introduce a holistic model of care for individuals with IBD symptoms. Further research is required to understand how subjective, retrospective recall can influence participant responses, and understanding general practitioners’ perspectives of delay is warranted.

Feelings of Helplessness

While seeking a diagnosis was not the objective for many participants, most participants sought psychological and nutritional advice to help manage their symptoms, and many were told that diet was not related to their symptoms. Being unable to adjust their lifestyle habits meant that participants felt more out of control, increasing the psychological burden and shame, particularly when incontinent. Additionally, the feeling of helplessness for many participants extended to when they felt withdrawn from careers, social experiences, and food-related activities without psychosocial and nutritional support. The lack of psychological support also compromised participants’ well-being in other areas of this research, including participants’ ability to cope with stress.

It appears that, akin to addressing awareness and dissonance, feelings of helplessness can be solved through increasing IBD awareness. GPs will have a better understanding of diagnosis and treatment, meaning they will be able to tell patients what they can do to manage their condition better. Addressing helplessness is also related to the GP's approach, ensuring they convey empathy towards the patient’s situation by assuring them they can help regain control over their symptoms.

Frustration and Resentment

The final impact of a DD described by participants was feeling frustrated and resentful towards the health system and their DD journey, as they did not perceive a delayed diagnosis as reasonable. This research describes frustration and resentment as the retrospective negative reflection on the diagnostic procedure, misdiagnoses, and undermining of symptom severity.

It was apparent that participants who perceived GPs to lack IBD awareness knowledge tended to mistrust healthcare providers. Consequently, when a delayed diagnosis caused significant disruption to their lives, including an absence from social events, career changes, and poor mental health – emotional frustration and resentment became directed towards healthcare providers. Although they initially placed trust in their GP to have IBD awareness and provide appropriate care for their symptoms, participants ultimately felt betrayed by the health system as their delayed diagnosis worsened their physical symptoms, leaving them in emotional turmoil. A key frustration for participants stemmed from the realisation that a timely IBD diagnosis is feasible, given the availability of diagnostic procedures and medical resources.

To reduce frustration and resentment, adopting a holistic model of care alongside the biopsychosocial model would mean that the psychosocial and nutritional aspects of having IBD symptoms would be cared for. In doing so, healthcare workers can acknowledge the impact physical symptoms of IBD have on a patient’s psychosocial well-being, thus reducing the feelings of dissonance and helplessness that have been described in this research. Further, increasing awareness of IBD recognition and intervention would encourage more prompt diagnoses, reducing diagnostic delays. If these factors are addressed, frustration and resentment towards the health system should diminish.