| A preference for monitoring through imaging |
| …I had heard that there are scanners that they run over your body and somehow it lights up to see if there are any melanoma, |
| I have asked about this and was told that I would have to go to a private clinic that would cost way too much, |
| I just can’t afford it at all. Why can’t the hospital have equipment like that? [female, 21 yrs] |
| Regarding the provision of information |
| Lack of information |
| …I was not given information… all information I was given in written form was something I had to request… I never received |
| anything from my dermatologist or surgeon. [female, 33 yrs] |
| …no support or any information… [male, 45 yrs] |
| I was not given information about metastatic melanoma—I had to google this. I was not told about survival rates. I was not |
| told about recurrence rates. [female, mother of three young children, 33 yrs] |
| Conflicting information |
| I’ve been given conflicting information about what treatment is available to me. [female, 39 yrs] |
| …it seems to me that cancer information and resources are quite disjointed nationally. If I were to move interstate I’d have |
| no idea where to go for a scan. [female, 45 yrs] |
| Forgotten information |
| Telling me things at the time of diagnosis, (and even for my husband who was with me) it was hard to remember exactly |
| what was being communicated beyond dates and times and requirements for surgery and so forth… There were a million |
| details and it seemed the things we would need to know later were the things we forgot in the explosion of activity |
| and emotion surrounding the initial treatment… [female, 45 yrs] |
| Communication |
| Poor communication |
| …there is poor communication between the surgeon and my GP as to how to treat and care for my problem [female, 25 yrs] |
| …hospitals seem to have a silo mentality, that is, they do not share information. [male, 43 yrs] |
| Ideal communication |
| I would probably be reassured if there was a single person who was coordinating my care and who I could |
| communicate with as a single point of contact. [female, 42 yrs] |
| GPs and medical surgeons and specialists have a duty of care to their patients, and that includes communicating with |
| their patient regarding follow up care, and communicating with one another as health care professionals. [female, 52 yrs] |
| Good communication |
| My doctors and surgeons have been very supportive and accommodating with their time and explanations. [female, 39 yrs] |
| My oncologist and [I] have excellent communication channels. However, when I have been referred to the public system that |
| standard of communication deteriorates. The public system is obviously |
| stretched and personal follow-up and communication is lost. [male, 52 yrs] |
| A change in health professional |
| I go to a different clinic from the original one that removed the melanoma. I am scarred mentally and physically as the |
| wound came open after stitches were removed and they did not care or offer treatment… Am happy with new clinic and |
| they are appalled at my scar and lack of treatment I received. [female, 47 yrs] |
| …the doctors at the … Clinic show little inclination to want to answer questions at all. I have now switched treatment centres |
| and find that the approach by the oncologists there is much better. [male, 43 yrs] |
| Preferences for follow-up care coordination |
| Coordination is a good thing |
| To ensure all options and information is presented… [male, 36 yrs] |
| …to have a point of contact as to what I should be doing and who to |
| follow up with would be extremely valuable. [male, 45 yrs] |
| I can manage, however coordination may be helpful for others |
| I am confident enough to coordinate my own appointments and tests, however this would be an excellent idea for patients |
| without the same confidence. [female, 63 yrs] |
| Maybe for aged patients with other challenges. I prefer to self-manage. [male, 47 yrs] |
| Psychosocial factors |
| Emotional aspects |
| I was offered no follow up care… I was afraid and didn’t have a lot of knowledge as to what was happening [female, 21 yrs] |
| Emotional stress was worse than physical symptoms. [female, 46 yrs] |
| Just waiting for it to come back, not keen on that. [male, 46 yrs] |
| Therapy/counselling |
| …If after initial melanoma removed and so forth an actual face to face appointment is made with a counsellor/support |
| service by the surgeon/doctor… Sometimes you just need to talk to someone… [female, 42 yrs] |
| …lack of mental health care surrounding the diagnosis. [female, 38 yrs] |
