Background
Methods
Sampling and recruitment
Characteristic | Frequency |
---|---|
Median age at diagnosis | 55.5 years (range: 35 – 85) |
Cancer stage at diagnosis | |
Stage 1 | 13 (33.3%) |
Stage 2 | 21 (53.8%) |
Stage 3 | 4 (10.3%) |
Missing/unknown | 1 (2.6%) |
Cancer type | |
Invasive ductal carcinoma | 32 (82.0%) |
Other | 6 (15.4%) |
Missing/unknown | 1 ( 2.6%) |
Surgery type | |
Lumpectomy | 25 (64.1%) |
Mastectomy | 13 (33.3) |
Missing/unknown | 1 (2.6%) |
Received axillary lymph node dissection in addition to lumpectomy or mastectomy | 14 (35.9%) |
Number of patients receiving radiation therapy | 31 (79.5%) |
Therapy | |
Chemotherapy alone | 8 (20.5%) |
Chemotherapy + endocrine therapy | 21 (53.8%) |
Endocrine therapy alone | 9 (23.1%) |
Missing/unknown | 1 ( 2.6%) |
Median duration of treatment | |
(Chemotherapy and Biologic Therapy) | 156 days (range: 117–577) |
Proportion of patients receiving biologic therapy | 6 (15.4%) |
Study procedures
Phase 1: Needs assessment
Study phase | Purpose | Topics covered* |
---|---|---|
Phase 1
| Needs assessment | 1) Experiences of information sharing at various points in their /their patients’ cancer care |
2) Information gaps | ||
3) Preferred formats for receiving information | ||
4) Perceptions of how information is shared between oncologists/OHCPs and FPs | ||
5) Provision of follow-up care to BCPs | ||
Phase 3
| Evaluation of SCP | 1) Whether information needs were addressed effectively |
2) Any perceived gaps persisting | ||
3) Ease of navigation (web tools, paper-based tools) | ||
4) What worked well and what did not work well with specific components of SCP | ||
5) Information sharing between BCPs and FPs (and whether SCP tools facilitate this) | ||
6) Suggestions for improvement |
Phase 2: SCP design
Phase 3: Evaluation and feedback
Data analysis
Results
Phase 1: Needs assessment
Group | Theme | Subcategory | Quotes |
---|---|---|---|
Breast cancer patients (n =21 ) | Type of information | Tailoring information to patient’s needs | “One of the shortcomings is that there was very little preparation for any of the things that were coming. So there was a feeling that I scrambled a lot to understand whether what I was experiencing was completely normal, or whether it was something I should be paying attention to. And then figuring out if I needed to do something about that, or not.” (PRIP3) |
“ That’s a big thing too, is that the demographics of this population are changing. It’s a huge shift where we’re getting younger and younger and younger. … there wasn’t a lot of information for people below a certain age group.” (PRFG1P4) | |||
Type of information | Importance of human resources (e.g. peer support) | “I thought a peer counselling person to actually help someone through the process and through the challenges that exist would be a good idea. “ (PRFG1P9) | |
“ … whether it’s a mentor in a hospital, whether it’s a nurse who at least is a specialist. But information isn’t good enough because it’s too overwhelming. And I think the right information at the right stage is the real challenge … but it isn’t just information.” (PRFG1P7) | |||
Timing of information | Tailoring information to the patient’s needs (including stage of care) |
“Did you really give me the information when you did that, when you handed me a bag? Because you have to take in (to account) who the people are, and they are overwhelmed. So you need to give them the specific information in a timely way, and ensure they have the right information at the right time. I went home with a bag of information. There was no direction: here are some of the important themes you may want to pay attention to” (PRIP3) | |
“ I think when you are diagnosed and you are going through treatment there are so many things coming at you … you have so much information that’s given to you to read that you need someone … almost a coordinator who comes into day care and you can walk through all of those things with someone…” (PRFG2P4) | |||
Timing of information | Transitioning to follow-up care: questions about roles and responsibilities |
“I do have a concern about falling off the edge of the cliff, in the sense of, all of a sudden, do you just disappear? Will I have the same sense that my physical health is being monitored?” (PRIP3) | |
Relationship with FP |
“ In fact, throughout this whole process my family physician wasn’t involved at all … prior to this I was never really sick. So I didn’t see my family physician very often. So even to this day, I have more of a relationship probably at (oncology team)…” (PRFG1P5) | ||
“…in between all of my sessions, I would actually go and see him (family physician), just to bring him up to speed so he was part of the team … he and I have a fantastic relationship …he’s a really great GP. And I won’t give his name up! He’s amazing, and I think he’s helped me because of that.” (PRFG1P6) | |||
Need for SCP |
“ …I think the challenge is for the environment to provide access to information and support around it” (PRFG1P2) | ||
Family physicians (N = 8) | Type and timing of information | Access to timely information |
“ … I think for me it’s the timeliness, so … I’m getting it two months down the road. So, more often I’ll have the patients come back and see me and I’ll be “Okay, what did the specialist say to you? What should we do, what’s the plan?” And I find I’m talking more to the patients instead of getting the reports or the information from the specialist. So, it would be nice even to get something preliminary you know, just the plan …” (PRFGFP3) |
“I guess I don’t have a huge number of, of breast cancer patients but one of the main issues again is about timelines . The information that I have received has arrived you know, months later and at that point it’s not very useful ….you don’t have the information on hand to talk to the patient when it’s, when it’s relevant.” (PRFGFP2) | |||
Roles/ Responsibilities | Feeling ill-equipped to manage follow-up care |
“ We don’t always know the subt-, subtleties of the different findings and … what the implications are for prognosis and sometimes … it gets missed … but without us knowing it’s kind of, it makes things difficult, or it’s a lot of work for us to go digging into the pathology and the lymph nodes and trying to figure out what, what does that really translate into?” (PRFGFP7) | |
“ Just give some kind of guidelines about what’s appropriate to monitor and … how long they should be on the medication, whether they need, it needs to be reassessed at some point by someone, the side effects of medications … but in the longer term, outside of that acute phase.” (PRFGFP4) | |||
“So I think in general, the biggest problem is that patients feel very lost after they’ve left. They’re very anxious that every symptom or everything (that) happens is related to their disease. And that family physicians are probably not well trained enough in this area and other areas of oncology that they don’t know how to decipher a lot of this either, and how to communicate that, and how to incorporate that into training or how to get them that support that they need for them to feel comfortable are the biggest issues.” (PRIFP2) | |||
Relationship with FP |
“ when we mention to them possibly discharging them back to their family doctors, they feel that their family doctors have either not examined them throughout their treatment process, may not know what they’re finding, some still feel that their family doctor has missed the diagnosis, and that’s the biggest gap, they’re just not comfortable. And likewise, oftentimes we’ll get referrals back from old survivors who have minor problems that could be dealt with by the family doctor, but the family doctor is not comfortable dealing with it.” (PRIFP2) | ||
Specialist HCPs (n = 6) | Type and timing of information | Transitioning to follow-up care: suggested approaches |
So if you’re talking about survivors then and they finish their last chemo and then they say “Now what?” … if they could get something that they can take away with them, okay, follow-up every 3 months and …what other tests do they need and what(’s the) follow-up time? When do they see the medical oncologist? … Where does the family doctor fit into this? So, that if when a patient leaves after their final chemotherapy they have sort of a, a vision of …. how that’s going to look down the road, next year, next 2 years. (PRFG1OHCP4) |
Roles/responsibilities | Sharing responsibility for follow-up care with FP |
“… but we’re not always sure if they (FPs) receive all the reports in a timely fashion. I think it’s the whole entire medical kind of system. Good news is no news … If everything is fine, then you’re not going to hear from me. Sometimes information is faxed, they may not get it in a timely fashion, sometimes things may get missed … I think we still have to follow up to make sure that the physician gets the report, so things don’t get missed.” (PRIOHCP7) | |
Need for SCP | Sharing information with BCPs | “ I’ve had patients come to me and say ‘Well you know, so what do I do now?’ And they’ve already got (papers) and appointment books and other things and they just don’t even know it. And maybe they forget or they didn’t hear it or they’ve lost the little piece of paper … But maybe if we have something that they can take away with them….” (PRFG1OHCP2) | |
Importance of timely information sharing between OHCPs and FPs | “ Having a really good system in the computer, so it’s easier to track and follow patients. …. and like a sheet that comes out and says that on such and such a date she (patient) was here for a mammogram. If all the information could just kind of appear about this individual….” (PRIOHCP7) |
Patients needs
Type of information required
Information timing
Family physicians’ information needs
Feeling ill-equipped
Phase 2: Developing the SCP
Phase 3: Evaluation and feedback
Group | Theme | Subcategory | Quotes |
---|---|---|---|
Breast cancer patients (n = 18) | Comments on BCP website | “I wish I’d had this before” |
“I think there's a lot of good information there. And it would have been helpful to have it at the time of diagnosis.” (POSFG1P7) |
“I have been accessing information on the website very frequently. And I found it very comprehensive, very informative.” (POSFG2P3) | |||
“That bag of stuff was really overwhelming. I mean, you try, you pull it out and you looked at it. Then you put it in your cupboard. At least I did. This (website), it's so much easier. … You know specifically what you're looking for” (POSFG2P7) | |||
Structure of site |
“Because when I was diagnosed, I was given the booklets, the pamphlets, the everything, just right here. You don't need that. You need a gradual step-by-step to where you can go back, like, to the website, and just refresh yourself as you journey along”
| ||
“And I did find it extremely well-organized. I like the one page – every time you look something up it's kind of one page, you don't have to spend a lot of time scrolling through, looking for bits of information here and there.” (POSFG2P4) | |||
Balance of amount and type of information (“Fear factor”) |
“I like this part of it where it's just brief, it doesn't get too in-depth because it would be, if you're just starting out, newly diagnosed … it would be too stressful…too stressful knowing too much … It might scare people, the fear factor might come in more.” (POSFG1P2) | ||
“I think it's very useful, especially the symptoms. But the thing is, I always have some fear when I go there because, it still reminds me, oh I used to be a patient.” (POSFG1P6) | |||
Comments on patient booklet |
“ I think it's good because it's everything in a nutshell, instead of you getting these little business cards” (POSIP2) | ||
“Because when I was diagnosed, I was so overwhelmed that I couldn't even remember half of what had happened … to have something where you can write everything down.” (POSFG1P3) | |||
“It's very useful. All the useful information is there, right, starting from entering the hospital to where everything is located and what are the procedures, everything is very comprehensively explained.” (POSFG2P6) | |||
Comments on paper-based SCP and Rx summary tool |
“I did give her the form. She didn't have any reaction, I didn't expect her to.” (POSFG1P5) | ||
“The other thing is, if you're seeing more than one doctor for any other illness, I just take it (summary and SCP) with me, and they're always very pleased to get it, and make a copy and put it in the file…. Whether it's my GP or whoever. Like, I see a couple of other doctors for different things, they were very pleased to have that.” (POSFG2P7) | |||
Emphasizing health and wellness |
“So if you have something for healthy living, after this one … like a weekly menu or what you can take, how it helps you with your day-to-day life, and how if affects your body…” (POSFG2P5) | ||
Relationship with FP |
“Actually I didn't see my family doctor until maybe 6 months late. I finished all the treatment. I went there for something else … I don't feel my family doctor contributed a lot, I mean, to this process.” (POSFG2P6) | ||
“…so I'm going to take the information to him, and talk to him and see if he's interested. He said you know, 'I wasn't part of your treatment, I wasn't part of the whole thing.' So really, I got the impression that well, ‘why do you want to involve me now,’ kind of attitude.” (POSFG1P3) | |||
Family physicians (N = 5) | Comments on FP website | “Here’s what I need to do, ABCD” |
“Okay, cognitive dysfunction, potential problems, so how do I identify it? And then what do I do next because here if I open this article, um, and this is interesting but it’s not like boom, boom, boom where do I go with you know, what do I do next, right?” (POSIFP2) |
Suggestions for further improvement |
“(…) if we could print a symptom score and then just hand it out to the, hand it to the patient … oncologists (who) do that I think in their waiting rooms right? They have people fill out symptoms scores in the waiting room, you give it to the doctor and then we know ‘oh okay, this is how you’re doing right?’ So, it saves time because these questions are just as easily, in fact the symptom scores are validated in the way we ask questions randomly is not validated right? We’ll forget stuff, we don’t frame it in a way that necessarily is consistent and so …that’s something I think that would be helpful …” (POSIFP1) | ||
Comments on paper-based SCP and Rx summary tool |
“So the concept is good … the follow up thing I liked, and then here’s the symptoms of recurrence. … stuff could jump out a bit more than it does … (you) might consider boxes for certain things, red flags [Um hmm], things to watch for and then you have like a box in red or something … but otherwise it’s good.” (POSIFP1) | ||
Relationship with FP | On involving the FP in follow-up care: Transitioning |
“But that transition, that’s what makes the patient more comfortable you know, they, so they could be seeing the oncologist I don’t know every 3 months and then us maybe you know, every 6 months and then gradually they are seeing us every 3 months and the oncologist every 6 months and then just slowly fading out right? So that I think that would make it easier, it would make it easier for patients, it would make it easier for us. It’s just a question of timing it you know, right? But I, I haven’t seen that thus far right? Really now it’s kind of all or nothing, either we’re doing everything or good-bye right?” (POSIFP4) | |
OHCPs (n = 3) | Feedback on website | General commentary |
“…I think you’ve got a lot of the major resources that people would need to get connected to, then the physicians themselves probably don’t know about either so I think it’s great that you’re replicating it on both sides. It’s looking good.” (POSIOHCP3) |
Balance of amount and type of information (“Fear factor”) |
“ … do you tell everybody everything that might possibly happen or do you provide them that information once you’ve had the conversation in the context of the treatment they’re going to have? This is where people get scared…” (POSIOHCP3) | ||
“‘these could potentially occur, but will not necessarily happen to you, we will closely monitor you, and help you cope with possible side-effects.” (POSIOHCP1) |