Complexity of care and strategies of self-management in patients with colorectal cancer

Figures & data

Table 1 Demographics and participants characteristics

Characteristics	Patients	Patient representativesa	Nonphysician HCPs	Physicians
n	12	2	16	17
Sex (male)	83.3% (n=10)	50.0% (n=1)	18.8% (n=3)	58.8% (n=10)
Age (years)b	61.5 (58.0; 67.2)	(44; 62)c	38.0 (28.5; 50.0)	43.0 (35; 56.5)
Education ≥12 years	50.0% (n=6)	100.0% (n=2)	43.7% (n=7)	–
Professional experience (years)b	–	(10; 38)c	20 (5.0; 26.0)	15 (5.0; 26.5)
Health care setting
NCTd	–	–	75% (n=12)	29.4% (n=5)
Outpatient caree	–	–	25% (n=4)	70.6% (n=12)

Notes:

a Patient representatives = staff from patient support groups.

b Md (IQR).

c Minimum; maximum.

d NCT: oncological specialists.

e General practitioners, registered specialists.

Abbreviations: HCPs, health care professionals; NCT, National Center for Tumor Diseases; Md, median; IQR, interquartile range.

Table 2 Compositions of conducted focus groups (n=10)

User group	Number		Description
	Focus groups (n)	Participants (total N)
Patients	3	14	Patients with colorectal cancer, representatives from patient support groups
Physicians	4	17	Oncological specialists, GPs, registered specialists
Nonphysician HCPs	3	16	Nurses, social workers, physiotherapists, nutritionists, health care assistants
Total	10	47

Abbreviation: HCPs, health care professionals.

Table 3 Complexity of individual situations

Category	Subcategory	Mentioned by
Complexity of disease	Side effects of chemotherapy	b, a, c
	Anxiety and uncertainty	b, a
	Consequences of cancer treatment	b, a
	Co- and multimorbidity	a, b
Complexity of care	Interprofessional and intersectoral cooperation	b, a
	Importance of long-term and home care	b, c, a
	Private and social challenges	c, b, a
Complexity of treatment data	Increasing amount of data	a, c
	Various data sources and numerous data types	c, a, b
	Difficult traceability and assignment	a, b, c

Notes: a, patients; b, physicians; c, nonphysician HCPs.

Abbreviation: HCPs, health care professionals.

Table 4 Strategies of self-management

Category	Subcategory	Mentioned by
Proactive demanding	Support and guidance	c, a, b
	Meaningful talk with the doctor	a, c
	Therapy and treatment options	a, b
Proactive behavior	Organization of care	a, c
	Preparation of visits	a, b
	Searching for information	b, a
Proactive data management	Merging of treatment data	a, c
	Dissemination of information to providers	a, b, c
	Archiving of documents	a

Notes: a, patients; b, physicians; c, nonphysician HCPs.

Abbreviation: HCPs, health care professionals.

Table S1 Complexity of individual situations

Category	Subcategory	Reference
Complexity of the disease	(overall)	I think cancer patients are very complex patients […] not only medical but also the psychological aspects […] the disease is more than just a marathon [FG4-Doc4]
	Side effects of chemotherapy	I am really satisfied with the therapy except that I have just nausea and constipation and diarrhea and headache, and inflammation in the mouth and so on, and so on, So that comes regularly [FG1-P2]
	Anxiety and uncertainty	Patients are often afraid, as it goes on, as is the perspective [FG10-GP2]
	Consequences of treatment	Patients have [.] practical problems: ostomy care […] impaired wound healing, and so on [FG10-GP2]
	Comorbidities and multimorbidity	Yes, that’s quite a package […] because I had dealing not only with cancer but as I said to diabetes and then the “vessel cause” [FG2-P1]
Complexity of care	Interprofessional and intersectoral cooperation	I was passed around in the clinic […] also previously at the preliminary investigation I was at the […] urologist because […] the family doctor had a suspicion that I might have kidney stones […] the urologist sent me to the surgeon and the surgeon sent me to the gynecologist and there I got caught [FG3-P2]
	Importance of long-term and home care	A big issue is always the long-term care of the Stoma [FG9-GP4] So if he has an advanced prognosis patients are cared mainly at home [FG9-GP1]
	Private and social challenges	So when people are in working life if have a family […] that depends very much on in which living situation the people are and how the prognostic situation appears [FG8-T4]
Complexity of treatment data	(overall)	I have at home a huge paperwork with blood tests and everything […] and that’s just been a long time [FG3-P3]
	Increasing amount of data	And then when the patients are in treatment for a long time, then three folders containing medical reports are quickly full [FG8-T2]
	Various data sources and numerous data types	If the patient has collected results over the past 2 years, it is difficult to decide what is relevant or what not [FG4-Doc3]
	Difficult traceability and assignment	All of the data which has emerged, all the medical reports etc. […] they are all filed away somewhere, but it is always difficulty to reconstruct […] now and then you lose track [FG2-P1]

Table S2 Strategies of self-management

Category	Subcategory	Reference
Proactive demanding	Support and guidance	And then I said “please could you tell me where to go now” and then they told me the next steps and actively cared [FG1-P4]
	Meaningful talk with the doctor	In surgical ward I have actively searched for a conversation and then I complained. Then someone had time to talk with me [FG3-P6]
	Therapy and treatment options	I took my medical records to the clinic and told “so now we are watching us this together and discuss something you see” [FG3-P4]
Proactive behavior	Organization of care	I always took care of it. Whether it would have worked even without I do not know […] But I’ve always pushed [FG1-P4]
	Preparation of visits	My experience is that it is very helpful if you are well informed goes to the doctor […] all doctors – I think that’s just a certain human weakness – respond differently to patients who come informed [FG2-P1]
	Search for information	I then asked what I can actually eat and then they said “everything”. Then I have to learn [that this is not true]. However, there are excellent booklets on nutrition for cancer patients [FG2-P2]
Proactive data management	Merging of treatment data	I have all the reports. I am “clamped behind” and have said, hey I still lack and that is still missing and so on. So it worked well on request [FG3-P2]
	Dissemination of information	And I’ll tell it to anyone […] they should take and distribute their medical records […] if the patient does not have an extra copy for the doctors, then he will may be sent back home [FG3-P1]
	Archiving of documents	I also scan everything again and store it on the computer, as security [FG3-P4]