Evidence tables: preferences, wishes and expectations of patients with cancer about aftercare and survivorship
care
Clinical question: What are the patient preferences for six forms of cancer (breast, intestinal, prostate, bladder, skin and lung cancer)
Relevant articles were found by conducting systematic search actions. The search terms and result of the literature study can be requested from the
ACCC. The level of the studies included was graded in accordance with the levels of evidence applied by the CBO, as shown in Appendix 5. In doing
so, the below table from the CBO was also used to grade qualitative research.
Level
++
+
+/-
Study
Credible meta-synthesis (synonyms: meta-etnography, qualitative meta-analysis, meta-study) of qualitative studies
Credible study
Study of which the credibility is doubtful
Study with little credibility
B1
Author
AdewuyiDalton
Year
1998
Design
Qualitative
interviews
Level
+/-
n
109
Allen
2002
Interviews:
phenomenological
method
-
6
Cardella
2008
Questionnaire,
retrospective chart
review
C
96
Population
Women from an
RCT that had
been assigned to
the normal FU
were asked to
participate.
Women at least
2 years in FU for
breast cancer
Intestinal cancer
patients with
curative intent
Results
Continuity of care and non-rushed consultation are described as desirable.
Access to cancer expertise, diagnostic tests and specialistic facilities are valued,
especially in the early stage of breast cancer.
A consultation leads to fear of recurrence in women who would otherwise live
free of this fear. In turn, this fear results in a need for a consultation. Despite this,
women are unsatisfied with the FU: clinics are busy and understaffed. This may
influence the physical and psychological state of the patient.
Patients wish to be involved in decision-making, find FU important and are
satisfied with it. Despite a guideline for intestinal cancer, there is still a lot unclear
about the guidelines for professionals, and there is confusion about which
professional has the responsibility for requesting tests/examinations when
multiple professionals are involved.
Author
Cox
Year
2006
Design
Questionnaire with
different scenarios
Level
+/-
n
75
De Bock
2004
Cross-sectional
survey, written
questionnaire
C
84
Gall
2007
RCT, then
questionnaire
B
338
Grunfeld
1999
RCT, then written
questionnaire
A2/B
296
Gulliford
1997
RCT, questionnaire
B
196
Population
34 patients in FU
for lung cancer
10 family
members
20 staff
members 11
general
practitioners
Women in FU for
breast cancer
without
recurrence, 2-4
years after
primary
treatments
Intestinal cancer
patients were
divided in 2
groups: FU by
surgeon or GP
Breast cancer
patients
assigned to 2
groups: normal
FU, or FU by GP
Breast cancer
patients
assigned to 2
groups: normal
FU, or
mammography
only
Results
Respondents are asked to evaluate different scenarios of follow-up on a scale of
1-5. A standard FU conducted by a nurse (which is safe and cost-effective in
oncology) is valued highly. FU by the GP is valued the least. FU by telephone
gave negative and positive polarised responses. A clear protocol, training, and
easy access are found to be important.
Information about long-term effects of treatment and prognosis, discussion about
prevention of breast cancer, genetic factors and changes in the untreated breast
are important. X-rays and blood tests are appreciated. Lower satisfaction about
personal factors and higher scores on the Hospital Anxiety and Depression Scale
are related to preference for supplemental tests/examinations. Receiving
hormonal- or radiotherapy was related to a preference for more intensive FU.
QoL reduced after treatment, but is normal again after 1 year. Fear and
depression is the same/more than general population. No differences in HRQoL
or satisfaction between FU by surgeon or GP. Being able to choose does not
increase the HRQoL.
Patients treated by the GP were more satisfied than patients treated in the
hospital. Patients must be fully informed about the goals, expectations and
limitations of FU so they can make an informed decision.
2x as many patients preferred less FU in both groups. No increase in
consultations bij the GP or telephone consultations was seen in the group
receiving less FU.
Reducing the frequency of FU appears popular amongst patients in the standard
risk group.
Author
Hamajima
Year
1996
Design
Questionnaire
Level
C
n
293
Population
Cancer patients
(different types)
Hodgkinson
2006
Questionnaire
C
117
Breast cancer
patients
Katsumura
2008
Analytic hierarchy
process
B
285
Patients with
intestinal cancer
Kiebert
1993
Questionnaire
C
127
Cancer patients
Koinberg
2001
Interviews (half
structured):
phenomenographic
method
+/-
20
Breast cancer
patients in FU
Liu
2005
Semi-structured
interviews
+/-
20
Cancer patients
(different types)
Results
74% of the patients always want clear info about the prognosis of the disease, in
which they indicate they find video or written documentation suitable. Especially
clear information about the disease, treatment and the specialisms of the hospital
are important.
Improved follow-up services are required to meet the support needs by patients
(especially fear plays a role). The most important needs are help with the thought
that the cancer will come back, information about the disease and assistance in
understanding it, alternative or additional therapies. Patients especially have a
need for this psychosocial support and reassurance.
Patients view the efficacy and risks of coloscopy differently when they have
received information about coloscopy. The lack of information is related to the
differences in priorities regarding efficacy and risks. Patients must be well
informed before an FU decision is made.
Most patients preferred regular follow-ups. There was more psychological stress
than physical stress 1 month before the consult, but this was significantly lower
after the consult. Conclusion: follow-ups reduce psychological stress and fear,
and is valued by patients.
Routine, continuity and reliability in the FU and accessibility in relation to making
appointments is important. The technique and expertise by the professionals give
a feeling of safety. Some patients indicate they would like as much information as
possible; others do not wish this.
There are strong reasons to revise the traditional FU system to achieve the most
effective system that meets the needs of patients.
Cancer patients have a need for information and emotional support, but Chinese
patients do not expect emotional support from the specialist, but more from family
and good friends. This group often does not express their emotional needs to
nurses or specialists: this is a family matter. Nurses need to show they are open
to this form of support. It is also recommended that there are more private
opportunities for communication between patient and family.
Author
MilliatGuittard
Year
2007
Design
Questionnaire
Level
C
n
140
Population
Breast cancer
patients
Montgomery
2008
Questionnairebased cohort study
C
79
Breast cancer
patients
Morris
1992
Written
questionnaire
C
223
Breast cancer
patients
Papagrigoria
dis
2003
Questionnaire
C
95
Patients with
intestinal cancer
Paradiso
1995
C
478
Peacock
2006
Different
questionnaires
Discrete Choice
Experiment
C
339
Specialists, GPs
and patients
Australian
Ashkenazi
jewish women
Results
At least 80% is satisfied with their involvement in the decision-making process
and most patients want the specialist to make the medical decisions, after
consultation with the patient. 79% would agree to also have the medical file in
their possession, in order to improve communication with the specialist (shared
medical record).
The expectations of patients in relation to frequency and duration of FU are
measured. In relation to frequency, patients expect three-monthly to annual
checkups. Patients vary in opinion about the duration of the FU. Some expect
several years, others expect FU ends after their adjuvant treatment.
Patients are also asked about their idea about the goal of FU. Most patients
believe that the goal of FU is to detect recurrences, very few see psychological
assistance and the detection of side-effects as the goal of FU. One third of
patients do not want to come back for FU when they are told how few metastases
are detected during consultations.
85% prefers FU in the clinic: also a lot of support for FU by GPs. 81% says that
FU is reassuring and results in less fear. The most important reason for FU is
therefore actually reassurance rather than detection of a recurrence.
High level of satisfaction with FU in the hospital regarding waiting times,
knowledge by professionals, consultation duration, and the possibility to discuss
personal problems. 50% would not want another form of FU. A minority suffered
from fear (35%), sleeping problems (27%) and reduced appetite (8%) before the
consultation. The reassuring results compensated for this fear. Attitude towards
FU was not related to the reported fear. Patients have a different view of the risk
they are under than is actually the case.
Patients: having consultations with multiple specialists instead of just one, and
living far from the health care centre results in a reduced quality of life.
Information is 2x as important as advice about follow-up, 4x as important as
preparation for tests and 9x as important as help with the decision. Women differ
in opinion about which aspect is the most important. Care that addresses this will
therefore best meet the wishes of the client.
Author
Pennery
Year
2000
Design
Cross-sectional
study
Semistructured
interviews:
phenomenological
method
Cross-sectional
survey
Level
+/-
n
24
Population
Breast cancer
patients
Results
18 patients find consultations are rushed, 11 that the consultations are not
reassuring, 22 that the lack of continuity is not acceptable, 19 that expression of
emotions during the consultations is difficult, 18 state that they would like to
receive the FU in part or fully from a Nurse Practitioner.
Renton
2002
C
134
Women with
breast cancer
2006
Written
questionnaire,
desciptive analytical
approach
C
86
Cancer patients,
doctors and
administrative
staff
Sheppard
2006
Literature
study
+/-
30
article
s
Articles
Stiggelbout
1997
Interviews,
questionnaires
C
112
Intestinal cancer
patients
Wattchow
2006
RCT, then
questionnaire
B
203
Intestinal cancer
patients were
divided in 2
groups: FU by
surgeon or GP
84% find FU important; 90% are satisfied with the current state of affairs; 91% is
satisfied with the frequency and duration of appointments. Risk of recurrence and
the effects of treatment are the most important points of discussion. 67% finds it
important they see the same specialist. 64% would be satisfied with a nurseguided FU: 38% with a GP-guided FU.
Post-treatment care and services to cancer patients were researched. It appears
few services or training are offered. Patients indicate they wish to receive better
information (on how to deal with the disease, treatments, risks) and a more
systematic post-treatment programme (for example, physiotherapy,
rehabilitation), and clear guidelines about the different responsibilities of hospitals
and local services.
Some studies did not show that patients receive psychological benefits from the
FU.
Some articles say that patients prefer more FU, other articles contradict this. FU
by the Nurse Practitioner and GP is about equivalent to that of the surgeon. In
the end, patients must be part of the decision about their FU and receive a
personal FU on the basis of a risk analysis.
FU has no influence on the QoL. Patients are reassured by FU and view it
positively. Communication with the physician/specialist is appreciated. If the FU
would not detect recurrences any faster, most patients would still prefer FU.
FU by the surgeon or GP shows no difference in QoL, fear or depression or
patient satisfaction. There is also no difference in recurrences, death and time
until radio’s are detected. There is a difference, however, in the treatments
requested. Surgeons more frequently requested a colonoscopy and ultrasound,
while GPs more frequently requested faecal occult blood tests (FOBT).
Sægrov