By Amber Hudson,2014-06-26 20:10
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    Wednesday 2 May 2007


    Reference material A Question 3

Good end-of-life care according to patients and their GPs

GP selection

    A total of 17 GPs who were following an advanced postgraduate training in end-of-life care, organised by the Dutch College of General Practitioners, agreed to participate in this study. To represent the opinions of GPs who were not trained in end-of-life care, and the opinions of their patients, we extended our sample: the GPs who agreed to participate were asked to invite a colleague of theirs in the same district with no specific interest in end-of-life care to participate. A total of 14 GPs with no specific interest in end-of-life care agreed to participate, resulting in a total number of 31 participating GPs.

Patient selection

    After enrolment in the study, the GPs were asked to select for inclusion the first patient they encountered in their practice who met the following inclusion criteria: 1) a life expectancy of less than 6 months; (2) cancer,heart failure or chronic obstructive pulmonary disease (COPD) as underlying disease; (3) the GP was (one of) the primary caregiver(s), and (4) the patient had adequate command of the Dutch language. If for any reason, a GP did not approach a patient who met the inclusion criteria, the GP was asked to give the reasons for not doing so. If a patient met the inclusion criteria, the GP briefly described the study to this potential participant, and handed over an envelope containing an information sheet. The investigators then made an appointment with the patient to arrange an interview. Before the interview started, the patient was asked to give informed consent. If the investigators could not make an appointment because the patient could not, or did not want to participate, the GP was asked to select the next patient who met the inclusion criteria. To include the potential range of opinions of patient views with different illnesses, we aimed to interview patients with the three most frequently presented terminal diseases in general practice: cancer, heart failure, and COPD, 5 with both male and female patients in each group.

    Interviews Semi-structured, in-depth interviews were carried out in the patients’ home. Patients

    were interviewed for 4580 minutes guided by a topic list. During most of the interviews

    a partner or family member was present, and their comments were welcomed and included in the data. No information from the patient interview was made known to the GP. Approximately 2 weeks after the patient interview the GP was interviewed according to a similar topic list. All interviews were audiotaped, transcribed verbatim, and rendered anonymous. The investigators read the transcript while listening to an interview to ensure textual accuracy. The transcripts of the interviews then served as data. The interviews were performed by an academic researcher/pharmacist and a health sciences student. Prior to the interviews, both had followed an interview course, and during the entire interview period they were supervised by experienced qualitative researchers.

    Reference material B Question 4

Good end-of-life care according to patients and their GPs

That she‟s here whenever I need her. That‟s what I consider good care. You see, she comes here

    once a week. Spontaneously, you know.‟ (Patient, female, 49, breast cancer.)

    The most important thing [about good palliative care] is that you visit them. That you‟re standing by, that they can call you, that there‟s no barrier. I always try to make an appointment for the next

    visit when I‟m there. Then they know they can count on you.‟ (GP, cared for patient, male, 71, colon cancer.)

    „I‟ve given him my home number so that he can call me. I‟m not always at home in the weekends but when I‟m there he can reach me. Because I think it‟s important for him to have peace.‟ (GP,

    cared for patient: male, 75, mesothelioma.)

„A good GP, in this case doctor K, is someone who takes time to talk to you, even in these days,

    and someone who has adequate knowledge about my disease ... She‟s very competent. That‟s

    what I consider very important.‟ (Patient, female, 84, breast cancer.)

„For me at least, good palliative care is for me good medical care, it‟s good history taking,

    carefully listening, a right diagnosis, and proper treatment.‟ (GP; cared for patient: male, 80, COPD and heart failure.)

She [the GP] takes everything quietly. She talks with the nurses about those pills: should we do

    this or should we do that? Well, that‟s [what] it‟s all about, isn‟t it?‟ (Patient, female, 93, COPD and heart failure.)

„It‟s difficult when you visit the hospital, and later the GP. It‟s far easier if you visit only the hospital

    or the GP. They work against each other. They have other ideas. This is from the hospital, that‟s from the GP. He [the GP] says “let’s try this [medicine]”. Then you visit the hospital again and they disapprove.‟ (Patient, female, 80, heart failure.)

    [A good doctor is] someone who listens, and accepts it when I‟m down and takes time to listen to my story. Why am I terribly sad? And then, she tries to encourage me.‟ (Patient, female, 72, heart failure.)

„When I visit her, it‟s like visiting an acquaintance, we talk about the weather and how things are

    going, how the children are, and we just have a pleasant conversation. Then, the medical and

    technical things come up, and also the perception of her illness.‟ (GP; cared for patient: female 80, heart failure.)

„Any other one [GP] could do the same [care], but he wouldn‟t know that much about me.

    Through the years you develop a bond. And that‟s when you call each other to account, when you

    trust each other.‟ (Patient, female, 53, blood cancer.)

When you‟ve already done things well, and you reach a certain situation you don‟t have to ask for

    information and you don‟t have to explore, then you can talk easier and fall back on things. You

    know the patient, the family, and the environment. Yes, that matters. I mean, with Miss A, we

    obviously went through a very intensive period after the death of her husband. That was totally

    different, but you know the whole family.‟ (GP; cared for patient: female, 86, breast cancer.)

    Reference material C Question 5

    Risk of cervical and other cancers after treatment of cervical intraepithelial neoplasia: retrospective cohort study


    Our study is based on data of women treated for cervical intraepithelial neoplasia at Helsinki Central University Hospital, Finland during 1974 and 2001. Records for each patient included name, personal identifier, date and method of treatment, and diagnosis on the basis of histopathology.

    The primary data consisted of 22 939 visits or treatments of 7599 women. We linked these data with the Finnish population registry and the Finnish cancer registry5 to identify cases of cancer. Follow-up was from six months after the first visit until death, emigration, or 31 December 2003. We chose a lag period of six months before diagnosing invasive cancer to exclude cancer diagnosed at the initial visit. After exclusions, 7564 patients remained for analysis.

    The women were treated by knife or laser conisation, laser vaporisation, cold coagulation, or loop diathermy. At the first visit 2446 women were diagnosed as having CIN 1 precancerous lesions, 1543 as having CIN 2, 1334 as having CIN 3, and 2241 as having cervical intraepithelial neoplasia not otherwise specified.

    We used cancer incidence rates in the population of southern Finland to calculate the expected numbers of cancer cases, stratified by sex, five year age groups, and five year calendar period. We present the results as standardised incidence ratios (ratio of observed to expected numbers of cases) with 95% confidence intervals (calculated on the presumption that the number of observed cases followed a Poisson distribution).

    The mean number of visits per woman was 3.0 (range 1-31 visits). The mean number of visits for women with CIN 1 and CIN 2 lesions was 2.7 and 2.9, respectively, and for women with CIN 3 lesions it was 3.4. The mean age at the first treatment was 34.9 years (range 14-88 years). At the beginning of follow-up 43% of the patients were younger than 30, 52% were aged 30-59 (the group usually targeted for screening), and 5% were older than 60. The total follow-up time was 97 556 woman years. The average follow-up time was 11.9 years (range 0.5-28.0 years).

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