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Research

The role of patient and physician advocacy in reducing wait times for cancer care: a qualitative analysis

Maria Mathews, Donna Bulman and Dana Ryan
October 20, 2017 5 (4) E773-E778; DOI: https://doi.org/10.9778/cmajo.20170039
Maria Mathews
Division of Community Health and Humanities (Mathews, Ryan), Faculty of Medicine, Health Sciences Centre, Memorial University, St. John's, NL; Faculty of Nursing (Bulman), University of New Brunswick, Fredericton, NB
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Donna Bulman
Division of Community Health and Humanities (Mathews, Ryan), Faculty of Medicine, Health Sciences Centre, Memorial University, St. John's, NL; Faculty of Nursing (Bulman), University of New Brunswick, Fredericton, NB
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Dana Ryan
Division of Community Health and Humanities (Mathews, Ryan), Faculty of Medicine, Health Sciences Centre, Memorial University, St. John's, NL; Faculty of Nursing (Bulman), University of New Brunswick, Fredericton, NB
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Article Figures & Tables

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    Table 1: Characteristics of participants by cancer type
    CharacteristicCancer type; no. (%) of participants
    Breast
    n = 18
    Colorectal
    n = 15
    Lung
    n = 11
    Prostate
    n = 16
    All types
    n = 60
    Sex
        Male0 (0)11 (73)6 (54)16 (100)33 (55)
        Female18 (100)4 (27)5 (45)0 (0)27 (45)
    Age
        < 6516 (89)10 (67)6 (54)8 (50)40 (67)
        ≥ 652 (11)5 (33)5 (45)8 (50)20 (33)
    Cancer stage
        Early11 (61)0 (0)2 (18)4 (25)17 (28)
        Late6 (33)9 (60)7 (64)12 (75)34 (57)
        Unknown1 (6)6 (40)2 (18)0 (0)9 (15)
    Residence
        Urban6 (33)5 (33)1 (9)3 (19)15 (25)
        Semiurban6 (33)4 (27)2 (18)4 (25)16 (27)
        Rural6 (33)6 (40)8 (73)9 (56)29 (48)
    Marital status
        Married or equivalent16 (89)13 (87)10 (91)16 (100)55 (92)
        Single2 (11)2 (13)1 (9)0 (0)5 (8)
    Overall satisfaction with wait times
        Dissatisfied9 (50)6 (40)3 (27)6 (38)24 (40)
        Satisfied9 (50)9 (60)8 (73)10 (62)36 (60)
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    Table 2: Themes and illustrative quotations
    ThemeQuotation no.Illustrative quotation
    Efforts by patient to reduce wait times1And the third time I went back, I asked him if he would send me for a chest x-ray … because I was getting concerned that there might be something else. And he did, he sent me for a chest x-ray, and the reports came back that there was a … mass on my lung. (ID 337, man, lung cancer, rural, satisfied)
    2I kept saying "my tummy doesn't feel right, I feel like there's something wrong. Maybe you could do an endoscopy test," and [the physician is], like, "You're 39 and you don't have any symptoms, there's nothing wrong with you." And they basically laughed in my face that I was complaining so much. (ID 219, woman, colorectal cancer, semiurban, dissatisfied)
    3So I spent a few months being tested for celiac; that test got lost in the system. Four months later, I tracked it down myself, and my family doctor refused to look for it … because he just assumed when it's ready it would show up on his computer. … Eventually I phoned the blood laboratories in St. John's and found my results and it came back negative. (ID 219, woman, colorectal cancer, semiurban, dissatisfied)
    4And the problem with pressing is that the doctors, a lot of them will say, "The hell with you, get the hell out," you know? So you're caught between a rock and a hard spot. (ID 224, man, colorectal cancer, urban, dissatisfied)
    5I called [the referring gastroenterologist] back and said, "Look, [the surgeon] says I'm not on her list, or there's no list, I'm not on her surgery list," and he said, "Well, I definitely gave [your file] to her." So he said, "I'll call her right away myself." (ID 231, woman, colorectal cancer, urban, satisfied)
    6I think if I had sat home and just waited for the phone to ring, it would have been delayed a lot longer. But I called up to the appointments and insisted that an appointment be given ASAP. (ID 231, woman, colorectal cancer, urban, satisfied)
    7In my case, I didn't even ask [about travelling clinics], because I just said "Whenever I can." Because if they came to Clarenville, you would have to wait for whenever they came to Clarenville. … And for me I wanted to see them at the earliest appointment, so I was willing to travel. (ID 117, woman, breast cancer, rural, satisfied)
    8I mean, I work in the health care system, and I think that gave me a little bit of an up on who to call. … Anyone in the general public, who is waiting on this stuff … doesn't know how to insist, how to really self-advocate; unless you really know the system and know how to navigate it, you're kind of a victim of it and you're waiting and waiting. (ID 107, woman, breast cancer, urban, dissatisfied)
    Efforts by family and friends to reduce wait times9So I was waiting and waiting and waiting [to hear about the travelling clinic to Corner Brook] … and then the wife said, "I think it's time for us to try to do something," and so she phoned St. John's … and the [clerk] said, "Well, if you can be here" for such a time or whatever it was, I think it was only a couple of days or something, "you can get in to see him." I said, "Great … I'll drive to St. John's." [If] I [had] had to wait for him to come into Corner Brook … I think it [would have been] another month longer. (ID 445, man, prostate cancer, semiurban, dissatisfied)
    10And we met with [the oncologist] through video conference and he ran upstairs and he got one of his colleagues to see when they could do radiation, and he came back and he had the appointment dates and everything to go into St. John's. (ID 223, man, colorectal cancer, rural, dissatisfied)
    11My daughter, who's a nurse in Nova Scotia, she had contacts with a doctor there, and he had contacts with Newfoundland. … Someone in St. John's knew this [doctor's name] in Clarenville. And she [the doctor] was full but she agreed to take me [as a patient]. (ID 103, woman, breast cancer, rural, dissatisfied)
    12So I ended up on the phone with my friend who is a resident radiologist, she told me to go on down to the cancer centre. So I called the cancer centre first and a friend of mine … she answered the phone. I didn't even know she worked at the cancer centre. … And we started talking and she said, "Come on down and [oncologist's name] will see you." So my husband and I walked down that afternoon and walked into [the oncologist's] office, like without an appointment or anything. (ID 104, woman, breast cancer, semiurban, dissatisfied)
    Efforts by members of health care team to reduce wait times13"And in our opinion," the doctor wrote, "[patient's name] should not have to wait that long. And it would be advisable to seek other options for him." (ID 449, man, prostate cancer, rural, dissatisfied)
    14So I asked [the surgeon] … "Do you … confer with an oncologist, or is it not done that way?" He said, "No, it's not normally done that way," but he said, "If you want to speak to one, I'll set up an appointment." Which he did … the very next Wednesday, I had an appointment with [the oncologist] at the cancer clinic. … And I didn't know how long that was going to take, but [the surgeon] … contacted that unit and … explained to them that [I] needed to have this done … pretty much ASAP. And I was scheduled in as quick as they could get me in. (ID 118, woman, breast cancer, urban, satisfied)
    15When [the family doctor] made an appointment for the [computed tomography] scan, he said, "I'm going to set you up for a colonoscopy just in case, down the road; I'll make an appointment now, so … you won't have so much lead time if you do need one." (ID 226, man, colorectal cancer, semiurban, satisfied)
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The role of patient and physician advocacy in reducing wait times for cancer care: a qualitative analysis
Maria Mathews, Donna Bulman, Dana Ryan
Oct 2017, 5 (4) E773-E778; DOI: 10.9778/cmajo.20170039

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The role of patient and physician advocacy in reducing wait times for cancer care: a qualitative analysis
Maria Mathews, Donna Bulman, Dana Ryan
Oct 2017, 5 (4) E773-E778; DOI: 10.9778/cmajo.20170039
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