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Feature and review paper

Preferences of colorectal cancer patients for treatment and decision-making: a systematic literature review K. DAMM, DIPL-ÖK, RESEARCH ASSISTANT, Center for Health Economics Research Hannover (CHERH), Leibniz University Hannover, Hannover, A. VOGEL, PROF DR MED, GROUP LEADER, Department of Gastroenterology, Hepatology and Endocrinology, Hannover Medical School, Hannover, & A. PRENZLER, DR RER POL, MANAGING AND RESEARCH DIRECTOR, Center for Health Economics Research Hannover (CHERH), Leibniz University Hannover, Hannover, Germany DAMM K., VOGEL A. & PRENZLER A. (2014) European Journal of Cancer Care 23, 762–772 Preferences of colorectal cancer patients for treatment and decision-making: a systematic literature review Treatment decisions in life-threatening diseases, like colorectal cancer (CRC), are crucial, since they have a great impact on patient’s survival and health-related quality of life. Thereby, the inclusion of patient’s preferences becomes more and more important; however, these first need to be identified. Therefore, we conducted a systematic literature review in 12 electronic databases, published between 2000 and 2012, in order to identify patient’s preferences concerning treatment preferences and involvement in the decision-making process. Nineteen studies were included and thoroughly analysed. This review shows that CRC patients do have preferences regarding different treatment options and outcomes; however, these preferences are not homogenous and seem to depend on personal factors like age and gender. Despite the existence of these preferences, the majority of patients prefer a passive role in the decision-making process, which in part may be explained by the severity of the disease. Again, subgroup analyses reveal the impact of personal factors like gender and education on the preference. Due to the importance of personal factors in the analysis of patient preferences, we identified an urgent need for larger studies that are suitable for subgroup analyses and incorporate multi-attributive measurement techniques, like discrete choice methods.

Keywords: colorectal cancer, CRC, preference, treatment, decision-making, review.

INTRODUCTION Cancers of the colon and rectum belong to the most common cancers worldwide with an estimated 1 million new cases and half a million deaths each year (Parkin et al. 2005; Ferlay et al. 2010). Depending on the tumour location and extent of the disease the treatment approaches vary. The choice of the Correspondence address: Kathrin Damm, Center for Health Economics Research Hannover (CHERH), Leibniz University Hannover, Königsworther Platz 1, D-30167 Hannover, Germany (e-mail: [email protected]). Funding: The project was funded by the Federal Ministry of Education and Research

Accepted 24 April 2014 DOI: 10.1111/ecc.12207 European Journal of Cancer Care, 2014, 23, 762–772

© 2014 John Wiley & Sons Ltd

respective therapy hence influences the patient’s survival prognosis and health-related quality of life (HRQoL) during and after the treatment (Simpson & Scholefield 2008). In surgical treatment, for example, different operation procedures such as low anterior resection (LAR) or abdominoperineal resection (APR) may result in different long-term HRQoL scores (Engel et al. 2003). In patients with advanced cancer, there is a consideration between an extended survival after adjuvant therapy and the risk of significant toxicity due to aggressive active ingredients (Zafar et al. 2013). Finally, the option of palliative care alone without life extension complements the therapy trade-off in particular in highly advanced cancer patients. All in all, considerations between uncertain risks and benefits are present in the treatment decisions of colorectal cancer (CRC) patients.

Colorectal cancer patients’ preferences

Many authors have already emphasised the necessity to consider the patient and his or her attitudes and needs in such treatment decisions. To consider patient preferences during oncology treatment is, in this context, seen as an indicator of quality in modern healthcare (Oliver & Greenberg 2009). The inclusion of patient preferences might also have positive effects on the compliance/adherence, which may result in better treatment outcomes. Furthermore, in the context of reimbursement decisions, both the US Food and Drug Administration and European institutions have underlined the importance of patient-reported outcomes like HRQoL or symptom management in addition to clinical outcomes like survival or recurrence [Food and Drug Administration (FDA) 2009; Institute for Quality and Efficiency in Health Care (IQWiG) 2011; Federal Joint Committee (G-BA) 2013]. It is necessary, however, to gather patient preferences first in order to interpret these outcomes, classify them in terms of their relevance and assess different treatment options (Mühlbacher et al. 2009). This kind of preferences concern the treatment with the respective outcomes as well as the involvement in the decision-making process. Hence, the aim of this systematic review is to identify the preferences of CRC patients, with regard to treatment preferences and involvement in the decision-making process regarding treatment choices.

have referred to preferences concerning the actual treatment (not rehabilitation or follow-up) or the decisionmaking involvement. Studies that analysed the general preferences of cancer patients were only included if the results for CRC patients were presented separately. The titles, abstracts and full texts of the identified studies were reviewed independently by two researchers. Disagreements between reviewers were resolved by consensus, reached by re-reviewing the respective papers and discuss them with a third reviewer.

RESULTS We have illustrated the results of our literature search process in Figure 1. Overall, we identified 19 publications that concerned the preferences of CRC patients. Eleven studies focused only on the treatment preferences of CRC patients, and two studies analysed the treatment

Publications identified n = 8961

Duplicates removed n = 2675

Review of titles and abstracts n = 6286

METHODS Retrieval of relevant publications was performed through 12 electronic databases, including Cochrane Central and Cochrane Reviews, DARE, EMBASE and EMBASE Alert, INAHTA, SOMED, MEDLINE, NHSEED, AMED, BIOSIS and SciSearch, which were accessed through the German Institute of Medical Documentation and Information (DIMDI). The following search terms were included by using the English and German words for: ‘colon or rectal or rectum or and bowel’ and ‘cancer or carcinoma or neoplasm or tumour’ in combination with ‘patient’ and ‘preference or willingness’. We also included search terms for lung cancer (lung, pulmonary, bronchial); however, those results are not presented in this publication. Supplementary, we performed a manual search. The results were limited to studies published in English or German between 2000 and September 2012. We only included original research articles, not reviews. Additionally, the studies must have fulfilled the following inclusion criteria: preferences must have been stated by CRC patients themselves; opinions of others (e.g. relatives) were not included. Furthermore, the publications must © 2014 John Wiley & Sons Ltd

Publications excluded n = 6192

Review of full text articles n = 94 75 articles excluded for the following reasons: -

Lung cancer n = 28 Unspecific cancer n = 26 Support/follow-up n = 8 Non-patient survey n = 4 Health state valuation n = 2 Methods paper n = 2 Duplicate n = 5 No preference study n = 1

Publications included Overall n = 19 Only treatment preferences n = 13 Only decision-making preferences n = 5 Both n = 1

Figure 1. Flow-chart of study selection.

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preferences of cancer patients in general but reported separate results for CRC patients. Five publications surveyed only the decision-making preferences of CRC patients, and one study surveyed both the decision-making and treatment preferences. The results of the latter study will be discussed separately in both the treatment preference and the decision-making involvement sections.

Treatment preferences The results of the 14 publications referring to the treatment preferences of CRC patients are summarised in Table 1. The majority of the studies (n = 10) analysed the patients’ preferences regarding different treatment options. Four studies aimed to measure patients’ preferences regarding different treatment outcomes. They will be represented first. Masya et al. (2009) used the Time Trade-Off method to identify the importance of nine specific HRQoL outcomes associated with CRC treatment. One hundred and three CRC patients and 264 physicians were asked to trade remaining life expectancy in return for avoiding adverse therapy effects. The results showed that local recurrence and faecal incontinence were considered worse outcomes (for patients and physicians). Patients’ third worse outcome was a permanent colostomy followed by bladder problems, frequent hospital visits for chemo- or radiotherapy, pain in the pelvis, perianal soreness, bowel frequency and sexual problems. The third worst outcome for physicians was pain in the pelvis, followed by bladder problems. Salkeld et al. (2004) also asked CRC patients (n = 175) to rate 17 different CRC-specific treatment outcomes (clinical as well as patient-reported) on Likert scales concerning their importance. The authors found out that a reduced risk of recurrence, HRQoL after treatment and avoiding long-term pain were most important followed by no feeling of regret, minimised pain during treatment and avoiding a colostomy bag. Osoba et al. (2006) conducted a discrete choice experiment (DCE) to survey the most important treatment attributes and negative HRQoL effects to be avoided. Unlike the previous two studies, the authors included 117 CRC patients as well as other cancer patients and applied the DCE to the cancer type unspecific domains and symptoms of the European Organisation for Research and Treatment of Cancer quality of life core (EORTC-C30) questionnaire. They found that diarrhoea, followed by nausea, role functioning, pain and emotional functioning were the most important effects to be avoided in early stage CRC. Patients with advanced CRC stated that nausea, pain, diarrhoea, emotional and role functioning were the worst side764

effects. Meropol et al. (2008) performed a computer-based survey of 68 advanced colorectal and other cancer patients to analyse the importance of length of life compared with quality of life (QoL) in general. Participants chose one out of the following four statements: the QoL is all that matters, the QoL is more important but the length of life matters, the length of life is more important but the QoL matters and the length of life is all that matters. They were also asked to rate the importance of QOL and length of life as independent domains on five-point scales. The CRC patients preferred length of life over QoL more often than vice versa; however, the majority rated both outcomes equally. The following 10 studies aimed to measure patients’ preferences regarding different treatment options. Three of these studies surveyed the impact of the administration form. Borner et al. (2002) conducted a cross-over study. Thirty-seven patients with advanced CRC treated with oral UFT® (tegafur-uracil)/LV (leucovorin) followed by intravenous FU (fluorouracil)/LV (or vice versa) chose afterwards the treatment they preferred more. Eighty-four per cent chose the oral treatment. Reasons were the preference for the home-based administration, less stomatitis and diarrhoea. Pfeiffer et al. (2006) as well as Twelves et al. (2006) used the same study design as Borner at al. but compared intravenous FL/LV with oral capecitabine. Pfeiffer et al. (2006) found 61% of 49 CRC patients preferring the less toxic intravenous FL/LV treatment. The authors concluded that patients prefer less intensive treatment and that it is of minor importance whether the medication is administrated orally at home or intravenous at the hospital. Twelves et al. (2006), who administered a lower number mg/m2 FL/LV than Pfeiffer et al. (2006) found 95% of 97 patients with advanced CRC preferring oral administration before treatment. After treatment the number decreased to 64%. Seven studies analysed the patients’ preferences regarding different surgery and adjuvant treatment options. Bossema et al. (2008) used the Treatment Trade-Off and Time Trade-Off method to examine the surgery preferences of patients who experienced either LAR or APR. One hundred and twenty-two low rectal cancer patients mostly preferred LAR over APR, even if LAR involved a risk of faecal incontinence. LAR patients accepted a higher risk of incontinence, to avoid APR. APR patients were less willing to give up life years to be without a permanent stoma than LAR patients. The study conducted by Zolciak et al. (2006) aimed at measuring the preferences of rectal cancer patients by choosing either APR, LAR or a third option (‘the surgeon should decide’). Prior to surgery 5% of the participants chose APR, 30% © 2014 John Wiley & Sons Ltd

© 2014 John Wiley & Sons Ltd 68; advanced CRC

Cancer patient values regarding HRQoL and LoL

376 patients with advanced cancer

No

45; rectal cancer

Preference for stoma or evacuatory disorder following surgery

Matsuoka et al. 2011 JPN Meropol et al. 2008; USA

See Harrison et al. 2008 AUS

See Harrison et al. 2008 AUS

Importance of specific HRQoL outcomes associated with treatment

Masya et al. 2009 AUS

264 physicians

103; CRC

One-choice question: HRQoL is all that matters, HRQoL is more important but LoL matters, LoL is more important but HRQoL matters, LoL is all that matters. Rating: importance of HRQoL and LOL as independent domains on 5-point scales

One question: preference between stoma vs. non-stoma status

Prospective measure of preference method (with TTO part): 5 treatment choices (low LAR compared with low LAR plus pre/post-operative radiotherapy, chemotherapy, chemoradiotherapy, APR). Thresholds by varying remaining life expectancy TTO: remaining life expectancy in return for avoiding adverse treatment outcomes

TTM: thresholds by varying the likelihood of recurrence

No

47; rectal cancer

Preferences with regard to adjuvant post-operative chemoradiation Differences in patients and clinicians preferences for surgical and adjuvant treatment therapies

Couture et al. 2005 CAN Harrison et al. 2008 AUS

TTM: certainty of a stoma weighed against risk of incontinence. TTO: remaining life expectancy to avoid a permanent stoma or faecal incontinence

No

122; low rectal cancer (60 APR, 62 LAR)

Methods One choice (op/i.v.) after both experiences

Comparison group No

Preference for oral UFT®/ leucovorin (LV) or intravenous (i.v.) 5-FU/LV chemotherapy Surgery preferences of patients who experienced either LAR or APR

Borner et al. 2002 NLD Bossema et al. 2008 NLD

Patients N; type of cancer 37; advanced CRC

Aim of study

Author Year Country

Table 1. Medical treatment preferences: study characteristics, methods and results

CRC patients more often preferred LoL over HRQoL than vice versa; majority rated both equally

>60% would give up a mean of 34% of life expectancy to avoid a stoma, >50% would give up a mean of almost 25% of their life to avoid chemoradiotherapy. Patients most averse to APR, most likely to opt for pre-operative radiotherapy. Physicians indicated strong preferences against all options Local recurrence and faecal incontinence are the worse outcomes (for both groups). Patients third worse outcome is permanent colostomy followed by bladder problems, frequent hospital visits for chemo/ radio, pain in pelvis, perianal soreness, bowel frequency and sexual problems Even when patients had evacuatory disorder, they preferred life without a stoma

84% preferred oral over i.v. Reasons: taking medication at home, less stomatitis and diarrhoea, pill over injection Most patients preferred LAR above APR, even if LAR involved a risk of faecal incontinence. LAR patients accepted a higher risk of incontinence, to avoid APR. APR patients were less willing to give up life years to be without a permanent stoma than LAR patients Median point to switch: 5%

Results

No

No

Continues

No

No

No

No

No

No

No

Unwilling to trade: older patients, patients with bad experience of radiotherapy Patients with colon cancer had a stronger aversion to adjuvant treatment than those with rectal cancer. Patients who know a patient with stoma were more likely to be averse to an APR No

Yes

Pharma sponsored

No

Relevant subgroup results

Colorectal cancer patients’ preferences

765

766 No

One choice of therapy (prior and after surgery) (a) APR, (b) LAR or (c) surgeon should decide

(a) 4 scenarios, with a treatment decision (b) SG: risk of cancer death in return for QOL improvement (c) TTO: remaining life expectancy in return for HRQoL See Borner et al. 2002 NL

17 Likert scales regarding the importance: e.g. minimise pain, avoid side-effects, HRQoL after treatment

See Borner et al. 2002 NL

Ranking questions and DCE; attributes: physical, role, social, emotional and cognitive function, chemotherapy-related side-effects, financial difficulties TTM and ACA; attributes: survival, local control, incontinence, sexual dysfunction

Methods

Before treatment: 95% preferred oral treatment; after treatment: 64%. Reasons: convenience, home-based administration and tablet formulation Preferences to APR, LAR or surgeon should decide: (i) prior to surgery – 5%, 30% and 65%, (ii) after APR – 46%, 22% and 32%, (iii) after LAR – 4%, 69% and 28%

Patients are able to trade, but were always less willing to gamble or trade than physicians. Patients’ strongest preference: avoid chemotherapy, followed by avoiding a permanent colostomy

Most important: reduce risk, HRQoL after treatment, avoid long-term pain, colostomy bag, no feeling of regret, minimise pain

17% of patients chose PRT at a 0% benefit; 11% would not choose PRT for the maximum benefit of 11%. Mean minimum benefit: 4%. For oncologists 5%. Most important for both groups: incontinence followed by local control, survival, sexual dysfunction 61% preferred the Nordic FL regimen and 39% capecitabine

Most important: Early-stage CRC: Diarrhoea, followed by nausea, role functioning, pain, emotional functioning. Late-stage CRC: Nausea, pain, diarrhoea, emotional and role functioning

Results

No

No

No

No

No

No

No

Male patients, older patients and those with radiotherapy experience were more likely to prefer a passive role No

No

No

Yes

See results

No

Pharma sponsored

Relevant subgroup results

ACA, adaptive conjoint analysis; APR, abdominoperineal resection; AUS, Australia; CAN, Canada; CRC, colorectal cancer; DCE, discrete choice experiment; DNK, Denmark; FL, Fluorouracil; FU, fluorouracil; HRQoL, health-related quality of life; JPN, Japan; LAR, low anterior resection; LoL, length of life; LV, leucovorin; NLD, The Netherlands; POL, Poland; PRT, pre-operative radiotherapy; SG, standard gamble; TTM, treatment trade-off; TTO, time trade-off; UK, United Kingdom; USA, United States of America.

249; rectal cancer

No

97; advanced CRC

Chemotherapy Preference for i.v. 5-Nordic FL/LV or oral capecitabine Preferences for APR or LAR

Twelves et al. 2006 UK Zolciak et al. 2006 POL

146 physicians

100; CRC

Ability to trade survival for HRQoL (to express preferences for treatment options)

Solomon et al. 2003 AUS

no

175; CRC

60 oncologists

66; rectal cancer

No

At what benefit oncologists and rectal cancer patients prefer PRT followed by surgery to surgery alone. Relative importance of treatment outcomes Chemotherapy Preference for i.v. Nordic FL/LV or oral capecitabine Most important treatment outcomes

Pieterse et al. 2007 NLD

258 patients with cancer

Comparison group

117; CRC

Patients N; type of cancer

49; CRC

Cancer patients preferences for HRQoL functional domains and symptoms

Osoba et al. 2006; USA

Pfeiffer et al. 2006 DNK Salkeld et al. 2004 AUS

Aim of study

Author Year Country

Table 1. Continued

DAMM ET AL.

© 2014 John Wiley & Sons Ltd

Colorectal cancer patients’ preferences

LAR and 65% preferred the surgeon to decide. After surgery 46% of those patients with an APR chose an APR, 22% chose LAR, 32% wanted the surgeon to decide. Four per cent of patients with LAR chose APR, 69% LAR and 29% preferred the surgeon to decide. Harrison et al. (2008) used the Prospective Measure of Preference method with a time trade-off part to find out the differences in patients’ and clinicians’ preferences for surgical and adjuvant treatment therapies. Five treatment options were given (LAR compared with LAR plus pre/ post-operative radiotherapy, chemotherapy, chemoradiotherapy, APR). By varying the remaining life expectancy, thresholds were identified. One hundred and three CRC patients and 264 physicians participated. Patients were most averse to APR and most likely to opt for pre-operative radiotherapy (PRT). Physicians indicated strong preferences against all options. More than 60% of the patients would give up a mean of 34% of life expectancy to avoid a stoma. More than 50% would give up a mean of almost 25% of their life to avoid chemoradiotherapy. Couture et al. (2005) used the Treatment Trade-Off method to measure rectal cancer patients’ preferences with regard to adjuvant post-operative chemoradiation. Thresholds were found out by varying the likelihood of recurrence. The 47 participants chose the adjuvant therapy for a median 5% likelihood of recurrence. Older patients and those with a negative experience of radiotherapy were unwilling to trade. Pieterse et al. (2007) used the Treatment Trade-Off method to estimate at what absolute benefit (local control) rectal cancer patients and oncologists prefer PRT followed by surgery to surgery alone. The relative importance was measured by using an adaptive conjoint analysis. (Hypothetical) treatments were described by different levels of four treatment outcomes (survival, local control, incontinence and sexual dysfunction). The 66 patients who participated chose PRT for a mean minimum benefit of 4%. The 60 oncologists stated a mean minimum benefit of 5%. Seventeen per cent of the patients chose PRT at a 0% benefit while 11% would not choose PRT for the maximum benefit of 11%. The most important treatment attribute was incontinence followed by local control, survival and sexual dysfunction. Solomon et al. (2003) conducted research to estimate the ability of CRC patients (and physicians) to trade survival for HRQoL and therefore express their preferences for treatment options. Three methods were used: (1) treatment decisions in different given scenarios; (2) standard gamble with the risk of cancer death; and (3) time trade-off between remaining life expectancy and HRQoL improvement. The strongest preference of the 100 participating CRC patients was to avoid chemotherapy, followed by © 2014 John Wiley & Sons Ltd

avoiding a permanent stoma. The authors concluded that patients were in general able to trade survival for HRQoL, but were always less willing to trade or gamble in comparison with physicians. Matsuoka et al. (2011) created a questionnaire to ask patients for their preference regarding life with or without a stoma. Forty-five rectal patients participated. They preferred life without a stoma, even when they had evacuatory disorder.

Preferences for treatment decision-making involvement The results of the six studies concerning the decisionmaking process are summarised in Table 2. Four studies used the Control Preference Scale, an instrument based on the Degner et al. (1997) card sort method. In this method, patients choose a decision-role statement that best describes their preferences (Table 3). The five statements represent three categories of patients: those who wish to take an active role (statements a and b), a shared role (statement c), or a passive role (statements d and e). In the remaining two studies, the authors conducted semistructured interviews. Elkin et al. (2007) asked 73 patients (all ≥70 years; 53% male) with metastatic CRC via the Control preferences scale for their decision-making preferences. Fifty-two per cent favoured a passive, 23% a shared and 25% favoured an active role. Pieterse et al. (2008) included 70 rectal cancer patients (mean age 64; 69% male) and 60 oncologists. The clinicians preferred the shared role (73%), whereas patients’ role preferences were more equally spread out. Patients with a lower education had a preference to relinquish decisional control. Ramfelt et al. (2005) included 55 CRC patients (mean age not specified; 47% male) and compared their preferences regarding the degree of participation before and 1 year after surgery. Before surgery 0% preferred an active role, 71% a shared role and 24% a passive role. After surgery the role preferences basically did not change (2%, 75% and 22% respectively). Salkeld et al. (2004) asked 175 CRC patients (61% ≥65 years; 59% male) for their role preference. Fifty-five per cent favoured a passive, 29% a shared role and 14% an active role. Women were more likely to prefer shared decision-making. Older patients and those who had undergone adjuvant radiotherapy were more likely to prefer a passive role. Beaver et al. (2005) and Sanders and Skevington (2003) conducted semi-structured interviews to identify patients’ views on participation in the decision-making process. Beaver et al., who spoke with 41 CRC patients (61% ≥60 years; 46% male), found out that participation in decisionmaking was about being informed and feeling involved in 767

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Preferences for involvement in treatment decisionmaking among elderly patients Assess the preferred role of oncologists and cancer patients in deciding about treatment

Elkin et al. 2007 USA

37; bowel cancer

175; CRC

55; CRC and rectal cancer

70; rectal cancer

73; metastatic CRC

41; CRC

Patients N; type of cancer

No

No

No

60 oncologists

No

No

Comparison group

Semi-structured interviews

Control preferences scale

Control preferences scale

Control preferences scale

Control preferences scale

Semi-structured interviews

Methods

Most patients preferred a limited role in the treatment decisionmaking

Before surgery: 24% favoured a passive, 71% a shared role and 0% an active role. After surgery: 22% favoured a passive, 75% a shared role and 2% an active role 55% favoured a passive, 29% a shared role and 14% an active role

Clinicians preferred the shared role (73%), patients’ role preferences were more equally spread out

Participation in decision-making was about being informed and feeling involved in the consultation process 52% favoured a passive, 23% a shared role and 25% an active role

Results

Women were more likely to prefer shared decision-making. Older patients and those who had undergone adjuvant radiotherapy were more likely to prefer a passive role No

Sign. association between a lower education in patients and a preference to relinquish decisional control No

No

No

Relevant subgroup results

AUS, Australia; CRC, colorectal cancer; NLD, The Netherlands; Sign., Significant (P < 0.05); UK, United Kingdom; USA, United States of America.

Patient’s experience of bowel cancer and the treatment decisionmaking process

Importance of decisionmaking aspects

Salkeld et al. 2004 AUS

Sanders et al. 2003 GBR

Compare preferences about the degree of participation in treatment decisionmaking before and after surgery

Ramfelt et al. 2005 SWE

Pieterse et al. 2008 NLD

Patient views on participation in treatment, physical and psychological care decisions

Aim of study

Beaver et al. 2005 UK

Author Year Country

Table 2. Decision-making involvement: study characteristics, methods and results

No

No

No

No

No

No

Pharma sponsored

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© 2014 John Wiley & Sons Ltd

Colorectal cancer patients’ preferences

Table 3. Control preference scale statements Patients’ decision role preference (a) (b) (c) (d) (e)

I prefer to make the final selection of which treatment I will receive I prefer to make the final selection of my treatment after seriously considering my doctor’s opinion I prefer that my doctor and I share responsibility for deciding which treatment is best for me I prefer that my doctor makes the final decision about which treatment will be used, but seriously considers my opinion I prefer to leave all decisions regarding my treatment to my doctor

Source: Own representation based on Degner and Sloan (1992).

the consultation process. Factors that impacted the wish to participate were lack of information, lack of medical knowledge and trust in medical expertise. Sanders et al. interviewed 37 bowel cancer patients (mean age 66; 64% male) and found out that most patients preferred a limited role in the treatment decision-making.

DISCUSSION To our knowledge, this is the first study to analyse the available evidence regarding the preferences of CRC patients for treatment and decision-making. In the following section, we will discuss and summarise the preferences of CRC patients regarding the choice of different surgery methods, certain treatment side-effects, the use of adjuvant therapies, the importance of the trade-off between the length and quality of life, and decision-making preferences. With regard to the preferred treatment methods the studies by Bossema et al. (2008), Harrison et al. (2008) and Zolciak et al. (2006) showed that patients are averse to APR and choose LAR instead. Bossema et al. (2008) showed that especially non-APR patients would accept a higher risk of incontinence to avoid APR; however, patients who already have an APR are less averse and less willing to give up life years to be without a permanent stoma than LAR patients. Zolciak et al. (2006) additionally showed that APR patients were more likely to choose APR compared with LAR while LAR patients predominantly choose LAR. However, Zolciak et al. (2006) also found out that before surgery a majority of patients prefer the surgeon to decide on surgeon methods. One year after surgery these proportions changed in favour of the respectively realised method. The importance of surgery methods is connected with the trade-off between the recurrence risk, the difficulties of selective resections and the need for a permanent stoma. Matsuoka et al. (2011) showed that patients prefer a life without stoma even when they have evacuatory disorder. These results are in line with Sprangers et al. (1995) and Dunn et al. (2003). Both research groups conducted systematic reviews on HRQoL in CRC patients. © 2014 John Wiley & Sons Ltd

They showed that patients who require a permanent stoma score lower on HRQoL scales than patients who undergo sphincter-saving resection, in particular regarding social factors and employment, leisure pursuits and sexual function. Therefore, even if the results relate on few not completely homogenous studies, the following conclusions can be drawn: patients are averse to APR and a (permanent) stoma. However, the non-acceptance of APR is reduced in patients who have undergone an APR and have a permanent stoma. This may be explained by a coping effect, since the patients get used to the circumstances. The results found by Masya et al. (2009) and Salkeld et al. (2004) also show the high relevance of HRQoL aspects related to bowel evacuations. Salkeld et al. (2004) also found a significant influences of gender and age and support previous results shown, for example, by MacDonald and Anderson (1984), who assessed the HRQoL in rectal cancer patients. They found women and younger patients more likely to feel the stigma of a changed appearance. Dibble et al. (1998) also found gender differences in the valuation of HRQoL dimensions (social well-being and physical competence were dimensions being more relevant for women while vitality and personal resources were more relevant for men) and concluded that gender-specific measurement tools are needed to evaluate HRQoL in CRC patients. The preferences of choosing an adjuvant post- or preoperative therapy have also been the focus of CRC-specific preference studies. Couture et al. (2005) found a median point of 5% likelihood of recurrence to choose adjuvant post-operative chemoradiation while Pieterse et al. (2007) showed a mean minimum benefit of 4% to undergo PRT. However, the latter authors also found 17% of patients refusing the adjuvant treatment in general; however, subgroup results were not reported. Couture et al. (2005) showed that older patients and those with bad experiences of radiotherapy were less likely to choose this adjuvant therapy form. These results are in line with Dunn et al. (2003), who found adjuvant treatment impacting upon the HRQoL of CRC patients due to toxicity, possibly causing distress and discomfort. In summary, this review suggests that many patients have concerns regarding adjuvant 769

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therapy; the subgroup results indicate that treatment decisions recommendations have to be differentiated. With regard to decision-making preferences, we identified six studies, four of which used the Control Preferences Scale by Degner et al. (1997). Overall, the results of these studies indicate that the majority of CRC patients would rather choose a passive than an active role. This result supports previous findings by Tariman et al. (2010). They conducted a systematic review on preferred and actual participation roles during healthcare decisionmaking in persons with different types of cancer (breast, prostate, lung and gynaecological) and found a majority of CRC and most of the other cancer patients preferring a passive role. In comparison, however, patients with CRC reported the lowest percentage of active role preference. The general preference for a passive role might be explained by the severity of a cancer disease: the trust in the physician’s perception in life-threatening situations might be of high importance. Ende et al. (1989), who examined the preferences of patients for decision-making and information seeking, found a negative association between disease severity and the desire to make decisions. However, again, subgroup analyses play an important role. Ende et al. (1989) showed a positive association between education status and the desire for autonomy, a result also found by Pieterse et al. (2008). Salkeld et al. (2004) in turn found gender and age influencing the decision-making preferences. Again, at least partly these results are in line with the research of Ende et al. (1989), who found age of all used socio-demographic variables having the greatest explanatory power, with younger patients expressing stronger preferences in favour of active decision-making. Additionally, it is an interesting phenomenon that the studies by Harrison et al. (2008) and Solomon et al. (2003) show differences between patient and physician preferences for treatment options. This gap might result in a mismatch between patient preferences and the actual treatment: a recent study by Zafar et al. (2013), using medical records and surveys among 702 US-patients with advanced CRC showed a discrepancy between expressed patient preferences for treatment and the received healthcare. Zafar et al. (2013), found that patient preferences often did not guide the course of treatment and patients who even expressed negative preferences regarding chemotherapy received these. Since a majority of patients seem to prefer a passive role, however, the

REFERENCES Beaver K., Jones D., Susnerwala S., Craven O., Tomlinson M., Witham G. & Luker

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mentioned mismatch might be less relevant for them. Here, further research is needed in order to combine the results from treatment and decision-making preference studies. Unfortunately, most studies included in this review did not conduct subgroup analyses or extensive statistical analyses. This is in part due to the small sample sizes: only six of the 19 studies included more than 100 patients. Hence, there is a need for larger studies that are suitable for subgroup analyses. Furthermore, in our analysis we did not distinguish between the several types of CRC (colon, rectal), since some authors interviewed CRC patients in general, while others specified the type. However, with exception of Harrison et al., who did distinguish between colon and rectal patients, we did not identify substantial preference differences which might be explained by the type of cancer. Nevertheless, the type of cancer can be used for subgroup analyses in further studies focusing on CRC in general to verify our impression. Another aspect for further research is the analysis of patient preferences with more sophisticated methods. The studies included in this review mainly chose ‘singlechoice’ designs and hence could not compare or rank several attributes. Herein, multi-attributive measurement techniques such as discrete-choice methods – often used already in studies that examine preferences for CRC screening strategies (e.g. Hol et al. 2010) – are recommended to gain a broader picture of the preferences of patients with CRC.

CONCLUSION This review shows that CRC patients do have preferences regarding different treatment outcomes and options. These preferences are, however, not homogenous and seem to depend on personal factors like, for example, age and gender. Despite the existence of these preferences, a majority of patients seem to favour a passive role in the decision-making process, which in part may be explained by the severity of the disease. Again, subgroup analyses reveal the impact of personal factors like gender and education on the preference. Due to the importance of these factors in the analysis of patient preferences, we identified an urgent need for larger studies that are suitable for subgroup analyses and incorporate multi-attributive measurement techniques, like DCE.

K.A. (2005) Exploring the decisionmaking preferences of people with colorectal cancer. Health Expectations 8, 103–113.

Borner M.M., Schoffski P., de Wit R., Caponigro F., Comella G., Sulkes A., Greim G., Peters G.J., van der Born K., Wanders J., de Boer R.F., Martin C. &

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Colorectal cancer patients’ preferences

Fumoleau P. (2002) Patient preference and pharmacokinetics of oral modulated UFT versus intravenous fluorouracil and leucovorin: a randomised crossover trial in advanced colorectal cancer. European Journal of Cancer 38, 349–358. Bossema E., Stiggelbout A., Baas-Thijssen M., van de Velde C. & Marijnen C. (2008) Patients’ preferences for low rectal cancer surgery. European Journal of Surgical Oncology 34, 42–48. Couture J., Chan R. & Bouharaoui F. (2005) Patient’s preferences for adjuvant postoperative chemoradiation therapy in rectal cancer. Diseases of the Colon and Rectum 48, 2055–2060. Degner L.F. & Sloan J.A. (1992) Decision making during serious illness: what role do patients really want to play? Journal of Clinical Epidemiology 45, 941–950. Degner L.F., Sloan J.A. & Venkatesh P. (1997) The Control Preferences Scale. Canadian Journal of Nursing Research 29, 21–43. Dibble S.L., Padilla G.V., Dodd M.J. & Miaskowski C. (1998) Gender differences in the dimensions of quality of life. Oncology Nursing Forum 25, 577–583. Dunn J., Lynch B., Aitken J., Leggett B., Pakenham K. & Newman B. (2003) Quality of life and colorectal cancer: a review. Australian and New Zealand Journal of Public Health 27, 41–53. Elkin E.B., Kim S.H., Casper E.S., Kissane D.W. & Schrag D. (2007) Desire for information and involvement in treatment decisions: elderly cancer patients’ preferences and their physicians’ perceptions. Journal of Clinical Oncology 25, 5275– 5280. Ende J., Kazis L., Ash A. & Moskowitz M.A. (1989) Measuring patients’ desire for autonomy: decision making and information-seeking preferences among medical patients. Journal of General Internal Medicine 4, 23–30. Engel J., Kerr J., Schlesinger-Raab A., Eckel R., Sauer H. & Hölzel D. (2003) Quality of life in rectal cancer patients: a four-year prospective study. Annals of Surgery 238, 203–213. Federal Joint Committee (G-BA) (2013) Verfahrensordnung: Bewertung des Nutzens von Arzneimitteln nach § 35a SGB [Procedure: benefit assessment of medicines in accordance with § 35a SGB]. Available at: http://www.g-ba.de/ downloads/62-492-667/VerfO_2012-1206.pdf Ferlay J., Shin H.R., Bray F., Forman D., Mathers C. & Parkin D.M. (2010) Estimates of worldwide burden of cancer in 2008: GLOBOCAN 2008. International Journal of Cancer 127, 2893–2917. Food and Drug Administration (FDA) (2009) Guidance for Industry: Patient-

© 2014 John Wiley & Sons Ltd

Reported Outcome Measures Used in Medical Product Development to Support Labeling Claims, Draft Guidance. Available at: http://www.fda.gov/downloads/ Drugs/GuidanceComplianceRegulatory Information/Guidances/UCM193282.pdf Harrison J.D., Solomon M.J., Young J.M., Meagher A., Butow P., Salkeld G., Hruby G. & Clarke S. (2008) Patient and physician preferences for surgical and adjuvant treatment options for rectal cancer. Archives of Surgery 143, 389–394. Hol L., de Bekker-Grob E.W., van Dam L., Donkers B., Kuipers E.J., Habbema J.D., Steyerberg E.W., van Leerdam M.E. & Essink-Bot M.L. (2010) Preferences for colorectal cancer screening strategies: a discrete choice experiment. British Journal of Cancer 102, 972–980. Institute for Quality and Efficiency in Health Care (IQWiG) (2011) General Methods. Available at: https://www .iqwig.de/download/General_Methods _4-0.pdf MacDonald L.D. & Anderson H.R. (1984) Stigma in patients with rectal cancer: a community study. Journal of Epidemiology and Community Health 38, 284– 290. Masya L.M., Young J.M., Solomon M.J., Harrison J.D., Dennis R.J. & Salkeld G.P. (2009) Preferences for outcomes of treatment for rectal cancer: patient and clinician utilities and their application in an interactive computer-based decision aid. Diseases of the Colon and Rectum 52, 1994–2002. Matsuoka H., Masaki T., Kobayashi T., Sato K., Mori T., Sugiyama M. & Atomi Y. (2011) Which is the preference of choice either life with a stoma or evacuatory disorder following rectal cancer surgery? Hepato-Gastroenterology 58, 749– 751. Meropol N.J., Egleston B.L., Buzaglo J.S., Benson A.B., 3rd, Cegala D.J., Diefenbach M.A., Fleisher L., Miller S.M., Sulmasy D.P., Weinfurt K.P. & CONNECT Study Research Group (2008) Cancer patient preferences for quality and length of life. Cancer 113, 3459–3466. Mühlbacher A.C., Bethge S. & Tockhorn A. (2009) Entscheidungen auf Basis von Effizienzgrenzen: Berücksichtigung von Patientenpräferenzen. Public Health Forum 17, e1–e3. Oliver A. & Greenberg C.C. (2009) Measuring outcomes in oncology treatment: the importance of patient-centered outcomes. Surgical Clinics of North America 89, 17–25. Osoba D., Hsu M.A., Copley-Merriman C., Coombs J., Johnson F.R., Hauber B., Manjunath R. & Pyles A. (2006) Stated preferences of patients with cancer for health-related quality-of-life (HRQOL)

domains during treatment. Quality of Life Research 15, 273–283. Parkin D.M., Bray F. & Pisani P. (2005) Global cancer statistics. CA: A Cancer Journal for Clinicians 55, 74–108. Pfeiffer P., Mortensen J.P., Bjerregaard B., Eckhoff L., Schønnemann K., Sandberg E., Aabo K. & Jakobsen A. (2006) Patient preference for oral or intravenous chemotherapy: a randomised cross-over trial comparing capecitabine and Nordic fluorouracil/leucovorin in patients with colorectal cancer. European Journal of Cancer 42, 2738–2743. Pieterse A.H., Stiggelbout A.M., BaasThijssen M.C., van de Velde C.J. & Marijnen C.A. (2007) Benefit from preoperative radiotherapy in rectal cancer treatment: disease-free patients’ and oncologists’ preferences. British Journal of Cancer 97, 717–724. Pieterse A.H., Baas-Thijssen M.C., Marijnen C.A. & Stiggelbout A.M. (2008) Clinician and cancer patient views on patient participation in treatment decision-making: a quantitative and qualitative exploration. British Journal of Cancer 99, 875–882. Ramfelt E., Lützen K. & Nordström G. (2005) Treatment decision-making in a group of patients with colo-rectal cancer before surgery and a one-year follow-up. European Journal of Cancer Care 14, 327–335. Salkeld G., Solomon M., Short L. & Butow P.N. (2004) A matter of trust-patient’s views on decision-making in colorectal cancer. Health Expectations 7, 104–114. Sanders T. & Skevington S. (2003) Do bowel cancer patients participate in treatment decision-making? Findings from a qualitative study. European Journal of Cancer Care 12, 166–175. Simpson J. & Scholefield J.H. (2008) Treatment of colorectal cancer: surgery, chemotherapy and radiotherapy. Surgery 26, 329–333. Solomon M.J., Pager C.K., Keshava A., Findlay M., Butow P., Salkeld G.P. & Roberts R. (2003) What do patients want? Patient preferences and surrogate decision making in the treatment of colorectal cancer. Diseases of the Colon and Rectum 46, 1351–1357. Sprangers M.A.G., Taal B.G., Aaronson N.K. & te Velde A. (1995) Quality of life in colorectal cancer. Diseases of the Colon and Rectum 38, 361–369. Tariman J.D., Berry D.L., Cochrane B., Doorenbos A. & Schepp K. (2010) Preferred and actual participation roles during health care decision making in persons with cancer: a systematic review. Annals of Oncology 21, 1145–1151. Twelves C., Gollins S., Grieve R. & Samuel L. (2006) A randomised cross-over trial

771

DAMM ET AL.

comparing patient preference for oral capecitabine and 5-fluorouracil/leucovorin regimens in patients with advanced colorectal cancer. Annals of Oncology 17, 239–245. Zafar S.Y., Malin J.L., Grambow S.C., Abbott D.H., Kolimaga J.T., Zullig L.L., Weeks J.C., Ayanian J.Z., Kahn K.L.,

772

Ganz P.A., Catalano P.J., West D.W., Provenzale D. & Cancer Care Outcomes Research & Surveillance CanCORS Consortium (2013) Chemotherapy use and patient treatment preferences in advanced colorectal cancer: a prospective cohort study. Cancer 119, 854–862.

Zolciak A., Bujko K., Kepka L., Oledzki J., Rutkowski A. & Nowacki M.P. (2006) Abdominoperineal resection or anterior resection for rectal cancer: patient preferences before and after treatment. Colorectal Disease 8, 575–580.

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Preferences of colorectal cancer patients for treatment and decision-making: a systematic literature review.

Treatment decisions in life-threatening diseases, like colorectal cancer (CRC), are crucial, since they have a great impact on patient's survival and ...
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