Early stages: the physical and emotional impact.

Early stages: the physical and emotional impact.

The patient perspective.

The patient perspective.

The Paper
Understanding the physical and emotional impact of early stage ADPKD: experiences and perspectives of patients and physicians.
Baker A et al
Clinical Kidney Journal: July 28, 2015

In one sentence:
Physical and emotional symptoms are widely reported by patients in early stages of ADPKD and are often severe enough to affect activities.

The study:

  • 80 patients with ADPKD
  • 72 nephrologists
  • 85 primary care physicians
    …. were interviewed for an hour by phone; the interviews were recorded and transcripts made.

The transcripts were translated into English (study is Europe wide) and analysed by experienced researchers for recurring themes.
From those themes a standardised questionnaire was devised and 600 doctors completed this questionnaire online, 300 each of renal specialists and family doctors.

The aim of the study was to explore the experience and impact of ADPKD in the early stages of the illness, from diagnosis and through a “latent” period before treatment is required. Doctors were included to gauge their perceptions of symptom severity.

The trigger for the study was the often-seen-in-textbooks statement “ADPKD in the early stages is symptomatic” which did not appear to match the empirical experience.

Design of the study:
The study was a collaborative survey in 9 European countries. Patients were recruited from clinics and through patient organisations. The recruitment was purposive, which means they deliberately selected patients to achieve a balance across the stages of renal impairment (CKD stages 1 to 5, as defined by eGFR). This means, however, that of the 80 patients, only 24 (31%) were actually in the early stages when interviewed, the rest relying on their memory to recall what symptoms they had and when.

The age range of patients was 20-74 years, and 62% were female.

It does not state how doctors were selected, either for interview or online questionnaire, but the authors do state the numbers reflected the distribution of nephrologists and primary care physicians in the countries, which means they believed it to be a reasonably representative sample of practising European physicians.

The patient telephone interviews covered topics of diagnosis (patient understanding and reaction to), symptoms, management (patient perception of delivery of care), and expectations.

The doctors were asked about their views on symptom severity and their perceptions of the impact of early disease.

The designed questionnaire is not described in detail, I suspect that will form part of another later paper.

The results
Two themes were identified regarding the patient experience of physical symptoms:


The pain ranged from “intermittent acute severe” through “prolonged generalised discomfort” and was experienced as abdominal, renal, back, digestive discomfort and breathlessness.

Some early stage patients suffered from fatigue enough to significantly affect their daily activities.

The emotional impact fell into 3 categories:

  • LOSS
  • FEAR

The loss included grieving for lives they had anticipated before diagnosis, reduced life expectancy, inability to do certain activities and in relation to families and children.

Whilst the patients could be certain about the eventual outcome, the timing and rapidity of progression is a huge cloud of uncertainty.

Fear was for self, children and families and often accompanied by anxiety and depression.

The paper uses selected patient comments to illustrate the themes:

  • “the word ‘fatal’ was used a lot”
  • “the pain was unbearable at certain times”
  • “just waiting for when it will get worse”

56% of the patients had felt hopeless at some point during the early stages of the illness.

Patients experienced frustration with care, had not been given sufficient information and many felt the doctors neither listened nor understood the severity of their symptoms. They had developed coping strategies of lifestyle modification or, in some cases, denial.

Of the 300 renal specialists, 72 believed there were no symptoms in the early stages of ADPKD and 234 of them felt there would be no or minimal impact on the patient’s activities in life. At least they did appreciate there would be an emotional impact on the patients, only 15 nephrologists said there was no emotional effect of early ADPKD.

The 300 primary care doctors appear to be slightly more aware of the physical symptoms but gave similar responses regarding the impact on their patients lives.

To be fair to the doctors they expressed a desire for further training for themselves and for the addition of psychological support for the patients. (But that’s a bit like the end question at an interview “have you anything you would like to ask us?” and you just have to come up with something, a soundbite with shallow meaning)

This is a qualitative study, focussed on gaining a better understanding but not on numbers. Having said that I feel I should comment on the numbers – remember only 24 patients were in stages 1 or 2 at the time of the study. This is really not very many at all. Whilst I recognise the heavy study load of conducting and analysing interviews, I feel that a paper with the heading “understanding the physical and emotional impact of early stage ADPKD” should actually include more subjects with early stage ADPKD. The other 56 patients of course had passed through the early stages but I am sure their recall would be affected by their more recent state – I am in stage 3 now, and yes I did have some symptoms five years ago but I couldn’t tell you how often they impacted my life then and, more importantly, I acknowledge feeling loss, anxiety and uncertainty at this stage but cannot be objective about whether those feelings existed in the earlier stages.

It is actually SHOCKING that so many doctors felt the physical symptoms in early stages to be uncommon. Come on folks, don’t you listen to your patients? The authors make a perceptive comment that doctors were more likely to acknowledge the physical symptoms if they could explain them by a corresponding event – a burst cysts or a urinary infection for example. This is classical conditioning by the “medical model”, as much as sociologists would like to drag doctors away from that standpoint, it is not going to happen, in order to study medicine you have to take a medical model approach. I would hope that modern medical education does enable doctors to put themselves in the patient shoes, even if only for a brief moment.

I was a little disappointed with the paper overall, would have liked to see more about the thematic analysis and certainly more on the doctor views, perhaps a comparison of the nephrologists with the general practitioners. There were not enough examples from patient interviews and the results seem to have been stated too simplistically. I also find myself asking “what possible other answer could there have been?” – that the early stages ARE asymptomatic? that doctors DO FULLY appreciate the impact? Did we really not know the answers before this study?

So, the findings suggest a lengthy period of potential suffering pain, fatigue and emotional effects with little awareness from physicians tasked with caring for us. So what now? All studies conclude with “more studies are needed” but actually with this one I think the end point should read

“The textbooks need rewriting – early ADPKD can be associated with pain, discomfort, and psychological symptoms that have a potential impact on the lifestyle and emotional wellbeing of the patient.”


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