The incidence of chronic diseases, including metabolic disorders and lifestyle related diseases, are increasing in line with some cancers (e.g. skin cancers) and degenerative diseases. 

Being diagnosed with a chronic disease can generate a range of feelings and emotions. The experience is likely to be influenced by:

• The length of time symptoms have been present and perceived      
• The length of time taken before a diagnosis
• The way the diagnosis is delivered
• Information received at the time of diagnosis
• The symptoms experienced and likely treatment options
• Personality and individual life situation
• Social support available
• Social and cultural background
• The impact of the disease on the persons lifestyle e.g. loss of normal lifestyle, restriction of activities and behaviours, social isolation, loss of expectation for future life style

What happens at diagnosis?

Many different reactions may occur when someone is first diagnosed with a disease and often these are similar to the grief reaction. Shock, disbelief, anger, frustration, sadness, numbness, fear, anxiety, pragmatism, acceptance and determination may be experienced not necessarily in any particular order and not by everyone.

The reaction will often depend on whether a person was aware there was a problem in the first place along with the type of symptoms experienced including their intensity, breadth, frequency and impact. Predicted outcomes, whether aetiology is known or not, even public awareness, will all be important.

As well as perceived expectation of illness, sometimes the journey to a diagnosis is a long and frustrating one whereby symptoms are erratic or their complexity makes diagnosis difficult. For example, many women with polycystic ovary syndrome (PCOS) often report frustration over delays in diagnosis, further exacerbated by lack of appropriate and helpful information.^1,2 This delay creates "further problems with illness, fertility, state of mind and quality of life".³

Alternatively, a diagnosis of cancer may be unexpected with little indication from symptomatology and consequently may result in shock. When diagnosed with a disease there is a significant sense that the ordinariness of everyday life has been disturbed and a new point is reached where life is lived more as the ‘unknown'.⁴      

What influences the reaction to the diagnosis?

Along with the type of disease, the way the information is delivered at diagnosis can have an effect on the reaction and the experience of the disease. Offering support, care and time for patients to ask questions in the initial stages of diagnosis can reduce the immediate and long term psychological impact, yet often the medical and clinical aspects of the disease are discussed in the first consultation at diagnosis rather than the emotional issues patients may experience. An individual's own life history will also influence reactions as will the context of a patient's life.

What comes next?

Depending on the stage of diagnosis and of the disease, patients are likely to require different information and have differing psychosocial needs as time progresses. The experience post diagnosis is largely individual again depending on the disease, medical treatment available and offered, social support and individual view of the disease.  Some will experience clinical depression and anxiety post diagnosis; others may emerge from the diagnosis with determination and a sense of empowerment and knowledge. For example some women diagnosed with type 2 diabetes will see it as the end of freedom and choice perceiving they are controlled by a disease, while others will focus on the knowledge gained, benefits of a healthier lifestyle and talk of new found freedoms.

What can we do?

The following are suggestions based on generalised patient needs and requests from recent research
literature.^3-6 It is often beneficial to:

• view giving a diagnosis of a chronic disease as a process and not a one off event
• provide extra time with patients at the time of diagnosis
• provide education about the disease perhaps in discussion and through well resourced information (or referral to accredited sources of information)
• promote discussion to allow involvement in decision making in the early stages (this will be patient dependent)
• provide extra time in consultations to discuss feelings along with planned follow up and review appointments to be made
• acknowledge feelings and concerns as real
• provide contact with others who are knowledgeable about the disease and can provide support (if suitable)
• try not to use words such as "don't worry" as this can seem patronising, cause feelings of invalidation and anxiety
• acknowledge and discuss the role and place of families/friends (will depend on the individual)
• discuss the likely effects on other areas of a patient's life such as work for example
• set up a Care Plan: a multidisciplinary coordinated approach can be helpful and supportive such as provided by a team care arrangement of allied health practitioners, or a mental health care plan for supportive therapy

Receiving a diagnosis of a chronic disease is likely a heterogeneous experience. However, satisfaction with the care and treatment given during the initial stages is likely to have a significant impact on the ongoing outcomes and experience of the disease.  

 Accepting Disease Ddiagnosis 192.93 Kb

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References

1. Kitzinger, C. and J. Willmott, 'The thief of womanhood': women's experience of polycystic ovarian syndrome. Soc Sci Med, 2002. 54(3): p. 349-61.

2. Sills, E.S., et al., Diagnostic and treatment characteristics of polycystic ovary syndrome: descriptive measurements of patient perception and awareness from 657 confidential self-reports. BMC Womens Health, 2001. 1(1): p. 3.

3. Avery, J.C. and A.J. Braunack-Mayer, The information needs of women diagnosed with Polycystic Ovarian Syndrome--implications for treatment and health outcomes. BMC Womens Health, 2007. 7: p. 9.

4. Tobin, G.A. and C. Begley, Receiving bad news: a phenomenological exploration of the lived experience of receiving a cancer diagnosis. Cancer Nurs, 2008. 31(5): p. E31-9.

5. Hugel, H., et al., How does current care practice influence the experience of a new diagnosis of motor neuron disease? A qualitative study of current guidelines-based practice. Amyotroph Lateral Scler, 2006. 7(3): p. 161-6.

6. Kim, S., et al., Self-reported experience and outcomes of care among stomach cancer patients at a median follow-up time of 27 months from diagnosis. Support Care Cancer, 2008. 16(7): p. 831-9.

Content Updated June 1, 2010