Title: Understanding illness experiences of patients with primary sclerosing cholangitis - a
qualitative analysis within the SOMA.LIV study
Version: 0 Date: 08 Nov 2022
Reviewer's report:
This is an impressive and comprehensive paper highlighting the experience of people with a
rare liver condition. The qualitative approach is appropriate and provides meaningful findings in
line with the study objectives. I recommend this paper is published and I only have some minor
comments for suggested changes, outlined below.
Introduction – Clearly sets out the need for research to understand the psychosocial needs of
this patient group and the value of a qualitative approach. The sentence beginning line 49 is a
bit long and unclear. I suggest re-wording it or splitting it in two.
Lines 53-57: Could you provide more lay terminology or give definitions for the non-clinicians
please e.g. strictures, pruritis.
Methods –
P6-7 A little more explanation of the exclusion criteria listed in table 1 would be helpful here.
The authors seem to exclude people unnecessarily where there might be scope to illuminate
further important issues in ‘real world’ scenarios (e.g. some of the comorbidities) that could be
captured with a qualitative approach. I suspect this is related to the quantitative study component
(as noted), in which case it would be good to explore the possible limitations of the exclusion
criteria for the qualitative component.
Recruitment: It would be helpful for the reader to know more about the process. Who contacted
patients via email? How were potential participants provided with a patient information sheet
and were they given time to think about it? At what point was informed consent agreed and
by whom?
Findings –
The authors have developed logical themes that are well supported by the data.
P15 Embracing the threat: The authors mention, ‘after a period of adjustment’ (line 322). Can
they elaborate on how they deduced that adjustment had taken place (especially given the shifting
nature of it)? Was there a different depending on time since diagnosis?
Discussion –
The authors do well to embed their findings in the theoretical literature on health and illness.
In terms of clinical implications, the manuscript would be improved if the authors could
suggest more tangible ways in which HCPs can better support people with PSC. Can they give
more specific types of intervention to promote acknowledgement of the patient experience,
awareness raising, ‘educating’ patients and supporting self-management. This section could be
expanded with supporting literature of e.g. supported self-management interventions that might
be applicable before summarising with the bullet points.
Title: Understanding illness experiences of patients with primary sclerosing cholangitis - a
qualitative analysis within the SOMA.LIV study
Version: 0 Date: 08 Nov 2022
Reviewer's report:
This is an impressive and comprehensive paper highlighting the experience of people with a
rare liver condition. The qualitative approach is appropriate and provides meaningful findings in
line with the study objectives. I recommend this paper is published and I only have some minor
comments for suggested changes, outlined below.
Introduction – Clearly sets out the need for research to understand the psychosocial needs of
this patient group and the value of a qualitative approach. The sentence beginning line 49 is a
bit long and unclear. I suggest re-wording it or splitting it in two.
Lines 53-57: Could you provide more lay terminology or give definitions for the non-clinicians
please e.g. strictures, pruritis.
Methods –
P6-7 A little more explanation of the exclusion criteria listed in table 1 would be helpful here.
The authors seem to exclude people unnecessarily where there might be scope to illuminate
further important issues in ‘real world’ scenarios (e.g. some of the comorbidities) that could be
captured with a qualitative approach. I suspect this is related to the quantitative study component
(as noted), in which case it would be good to explore the possible limitations of the exclusion
criteria for the qualitative component.
Recruitment: It would be helpful for the reader to know more about the process. Who contacted
patients via email? How were potential participants provided with a patient information sheet
and were they given time to think about it? At what point was informed consent agreed and
by whom?
Findings –
The authors have developed logical themes that are well supported by the data.
P15 Embracing the threat: The authors mention, ‘after a period of adjustment’ (line 322). Can
they elaborate on how they deduced that adjustment had taken place (especially given the shifting
nature of it)? Was there a different depending on time since diagnosis?
Discussion –
The authors do well to embed their findings in the theoretical literature on health and illness.
In terms of clinical implications, the manuscript would be improved if the authors could
suggest more tangible ways in which HCPs can better support people with PSC. Can they give
more specific types of intervention to promote acknowledgement of the patient experience,
awareness raising, ‘educating’ patients and supporting self-management. This section could be
expanded with supporting literature of e.g. supported self-management interventions that might
be applicable before summarising with the bullet points.
Please review this paper.
user
Title: Understanding illness experiences of patients with primary sclerosing cholangitis - a
qualitative analysis within the SOMA.LIV study
Version: 0 Date: 08 Nov 2022
Reviewer's report:
This is an impressive and comprehensive paper highlighting the experience of people with a
rare liver condition. The qualitative approach is appropriate and provides meaningful findings in
line with the study objectives. I recommend this paper is published and I only have some minor
comments for suggested changes, outlined below.
Introduction – Clearly sets out the need for research to understand the psychosocial needs of
this patient group and the value of a qualitative approach. The sentence beginning line 49 is a
bit long and unclear. I suggest re-wording it or splitting it in two.
Lines 53-57: Could you provide more lay terminology or give definitions for the non-clinicians
please e.g. strictures, pruritis.
Methods –
P6-7 A little more explanation of the exclusion criteria listed in table 1 would be helpful here.
The authors seem to exclude people unnecessarily where there might be scope to illuminate
further important issues in ‘real world’ scenarios (e.g. some of the comorbidities) that could be
captured with a qualitative approach. I suspect this is related to the quantitative study component
(as noted), in which case it would be good to explore the possible limitations of the exclusion
criteria for the qualitative component.
Recruitment: It would be helpful for the reader to know more about the process. Who contacted
patients via email? How were potential participants provided with a patient information sheet
and were they given time to think about it? At what point was informed consent agreed and
by whom?
Findings –
The authors have developed logical themes that are well supported by the data.
P15 Embracing the threat: The authors mention, ‘after a period of adjustment’ (line 322). Can
they elaborate on how they deduced that adjustment had taken place (especially given the shifting
nature of it)? Was there a different depending on time since diagnosis?
Discussion –
The authors do well to embed their findings in the theoretical literature on health and illness.
In terms of clinical implications, the manuscript would be improved if the authors could
suggest more tangible ways in which HCPs can better support people with PSC. Can they give
more specific types of intervention to promote acknowledgement of the patient experience,
awareness raising, ‘educating’ patients and supporting self-management. This section could be
expanded with supporting literature of e.g. supported self-management interventions that might
be applicable before summarising with the bullet points.
assistant