Appendix on Patient-Centered Outcomes and Valuation of Anxiety and Depression (PCOV-AD) Benjamin M. Craig Andréa Libório

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1 Appendix on Patient-Centered Outcomes and Valuation of Anxiety and Depression (PCOV-AD) Benjamin M. Craig Andréa Libório August 28, 2014 This appendix provides a didactic overview of the methods used in the Patient-Centered Outcomes and Valuation of Anxiety and Depression (PCOV-AD) study. The purpose is to compensate for the brevity necessary in publication and to aid readers who are less acquainted with health preference research. This appendix is written in English with some Portuguese text and the survey instrument is available online in both languages. On August 25, 2014, Andréa Libório visited Dr. Craig s lab to design a health preference study for use as a component of an ongoing study conducted in nursing homes in Rio de Janeiro, Brazil. From this week, PCOV-AD was designed to be fielded in Rio de Janeiro and at the Moffitt Cancer Center infusion clinic. Within the next 2 years, 5 primary papers will be published using these data: (1) Preference inversion on EQ-5D-5L; (2) English Conjunctions in Health Preferences; (3) Valuation of Anxiety and Depression among Chemotherapy Patients; (4) Portuguese Conjunctions in Health Preferences; and (5) Valuation of Anxiety and Depression in Nursing Homes. On these papers, Dr. Craig will serve as senior author; will serve as lead/corresponding author of papers 1-3; and co-author of papers 4-5. Ms. Libório will serve as lead/corresponding author of papers 4-5 and co-author of papers 1-3. Co-authors may include: Marisa Santos, Kristine Donovan, and Erica Lubetkin; however, co-authorship depends on Dr. Craig s approval as senior author. After these 5 initial papers are published, the data will be shared and made available for further research to those outside the study team (e.g., EuroQol Group). The Appendix has four sections. The first section decomposes a paired comparison into its components and reviews vocabulary that might aid the reader s understanding of the preference elicitation task. The second section presents the attributes used in the task and their relationship to parameters. The third section describes the selection of pairs and the fourth section shows survey statements in English and Portuguese. Section 1: Paired comparison In this study, respondents completed a series of paired comparisons that traded off health (health pairs). Prior to starting the health pairs, respondents completed three example pairs (apple vs. orange; good health vs. poor health; bad health vs. poor health). Afterwards, they were informed that they would now read a series of 30 paired comparisons where the 2 health scenarios are identical except for the descriptions provided. They were then told to imagine that you must live in one of the two scenarios. Screenshots are available online.(2) Figure 1 provides an example of a paired comparison task with a health pair. Each paired comparison was presented in a page-by-page format. To complete a paired comparison task, the respondent was required to click on the alternative (i.e., box) that he or she preferred. Such a task is choice-based (i.e., no scales) and does not impose set effects (i.e., only two alternatives). The task is must-answer because, in life, health has no opt-out. 1

2 ❸ ❹ Figure 1. Example of a Paired Comparison ❷ ❶ ❺ ❶ The respondent is asked, Which health scenario do you prefer? because the purpose of this task is to measure preference. Other paired comparisons may be designed to ask about judgment (e.g., Which is healthier? ) or perception (e.g., Are these the same? ). ❷ Under the question, the two alternative responses to the paired comparison are shown in boxes side by side. Each box contains a written description. This description is called a partial profile because it describes only a portion of a person s health. It is not possible to fully characterize health in the brevity of text allowed by the box (i.e., full profile). ❸ The text at the top of each box describes the attributes common to both alternatives, known as the base scenario or pivot. To compare two alternatives, each must affect the same person with the same start and end time. ❹ Underneath the pivot description, the first attribute is described for each alternative. In this example, the first attribute is pain or discomfort (e.g., No pain or discomfort ). The description is better on the left than on the right, which may compensate for the health problem described in the second attribute. Attribute descriptions are called adjectival statements because they are constructed to link directly to health outcomes data measured using adjectival scales. ❺ Underneath the first attribute, the second attribute is described for each alternative. In this case, the attribute is anxiety or depression (i.e., Slightly anxious or depressed ). The description of this attribute is better on the right than the left, which may compensate for the loss of life in the first attribute. A pair with only two attributes reflects a tradeoff (i.e., opportunity cost) and is known as a bipedal pair. Each respondent completed a series of 30 preference elicitation tasks. Each task had a bipedal pair of pivoted partial profiles based on adjectival statements from the PROMIS-29 and EQ-5D-5L.(3) Paired comparison responses had no effect on the selection and presentation of subsequent pairs (i.e., nonadaptive). Although paired comparisons have much room for improvement and innovation, the removal of adaptation has successfully mitigated biases commonplace with conventional preference elicitation tasks (e.g., standard gamble[sg] and time trade-off[tto]). In summary, the task used in this study is nested within the TTO, but non-adaptive paired comparisons have fewer assumptions and biases. 2

3 Section 2: Attributes and Their Relationship to Parameters in the Analysis The first step in the design of any health preference study is to determine what attributes to value. This section lists the attributes as they pertain to the Anxiety and Depression dimensions of PROMIS-29 and to the EQ-5D-5L and the parameters that represent their values. The pivot, or text at the top of each box describes the attributes common to both alternatives, namely the overall health. The PROMIS-29 has 29 items and includes 7 health-related quality of life (HRQoL) domains (Physical Functioning [PF], Anxiety [AN], Depression [DP], Fatigue [FT], Sleep [SL], Social Functioning [SF], and Pain [PN]); the pain domain has two subdomains (interference and intensity). The first six domains and pain interference have four items each and each item has five levels (i.e., 16 differences in level each). Pain intensity is assessed using a single 11-point numeric rating scale anchored between no pain (0) and worse imaginable pain (10), adding 10 additional differences in level. In each version of the EQ-5D instrument (i.e., 3L, Y, and 5L) includes five health-related quality of life (HRQoL) items (Mobility [MO], Self-Care [SC], Usual Activities [UA], Pain/Discomfort [PD], and Anxiety/Depression [AD]). The 5 items in the 3L and Y each have 3 levels (3L; none, some/moderate, unable/extreme and Y; none, some/a bit, a lot/very), and the 5L has 5 levels (none, slight, moderate, severe, unable/extreme). The 3L and Y versions describe 10 differences in level each and the 5L describes 20 differences in level. In complement to the EQ-5D items, AD and PD of the 5L were separated into 4 items anxiety (AX), depression (DE), Pain (PN) and Discomfort (DS). As a result, these new items have 12 additional differences in level. In this study, we focus on the differences on only the PROMIS DP and AN as well as the EQ-5D AD, PD, AX, DE, PN and DS, totaling 56 ( ). By definition, each difference in level has a non-negative value. Tables 1 to 3 show the English adjectival statements associated with each difference (Portuguese statements will be incorporated into the next version of the appendix). The values for the differences in level are represented by a single two-letter parameter in upper case (e.g., DP j,k ) with an index, j, for the item number and an index, k, for the lower level of the difference. For example, Figure 1 is a health pair that the first attribute is pain or discomfort (PD) and the second attribute is anxiety or depression (AD 1 vs. PD 1 ). 3

4 Table 1 English Adjectival Statements and Values: EQ-5D-5L, PN, DS, AX and DE, Better Health Worse Health Value MOBILITY (MO) No problems in walking about Slight problems in walking about MO 1 Slight problems in walking about Moderate problems in walking about MO 2 Moderate problems in walking about Severe problems in walking about MO 3 Severe problems in walking about Unable to walk about MO 4 SELF-CARE (SC) No problems washing or dressing self Slight problems washing or dressing self SC 1 Slight problems washing or dressing self Moderate problems washing or dressing self SC 2 Moderate problems washing or dressing self Severe problems washing or dressing self SC 3 Severe problems washing or dressing self Unable to wash or dress self SC 4 USUAL ACTIVITIES (UA) No problems doing usual activities Slight problems doing usual activities UA 1 Slight problems doing usual activities Moderate problems doing usual activities UA 2 Moderate problems doing usual activities Severe problems doing usual activities UA 3 Severe problems doing usual activities Unable to do usual activities UA 4 PAIN/DISCOMFORT (PD) No pain or discomfort Slight pain or discomfort PD 1 Slight pain or discomfort Moderate pain or discomfort PD 2 Moderate pain or discomfort Severe pain or discomfort PD 3 Severe pain or discomfort Extreme pain or discomfort PD 4 ANXIETY/DEPRESSION (AD) Not anxious or depressed Slightly anxious or depressed AD 1 Slightly anxious or depressed Moderately anxious or depressed AD 2 Moderately anxious or depressed Severely anxious or depressed AD 3 Severely anxious or depressed Extremely anxious or depressed AD 4 PAIN (PN) No pain Slight pain PN 1 Slight pain Moderate pain PN 2 Moderate pain Severe pain PN 3 Severe pain Extreme pain PN 4 DISCOMFORT (DS) No discomfort Slight discomfort DS 1 Slight discomfort Moderate discomfort DS 2 Moderate discomfort Severe discomfort DS 3 Severe discomfort Extreme discomfort DS 4 ANXIETY (AX) Not anxious Slightly anxious AX 1 Slightly anxious Moderately anxious AX 2 Moderately anxious Severely anxious AX 3 Severely anxious Extremely anxious AX 4 DEPRESSION (DE) Not depressed Slightly depressed DE 1 Slightly depressed Moderately depressed DE 2 Moderately depressed Severely depressed DE 3 Severely depressed Extremely depressed DE 4 4

5 Table 2 English Adjectival Statements and Values:PROMIS-29 DP and AN Better Health Worse Health Value ANXIETY (AN) Not feel fearful Rarely feel fearful AN 1,1 Rarely feel fearful Sometimes feel fearful AN 1,2 Sometimes feel fearful Often feel fearful AN 1,3 Often feel fearful Always feel fearful AN 1,4 Not find it hard to focus on anything other than your anxiety Rarely find it hard to focus on anything other than your anxiety AN 2,1 Rarely find it hard to focus on anything other than your anxiety Sometimes find it hard to focus on anything other than your anxiety AN 2,2 Sometimes find it hard to focus on anything Often find it hard to focus on anything other than your anxiety Often find it hard to focus on anything other than your anxiety Not have worries that overwhelm you Rarely have worries that overwhelm you AN 3,1 Rarely have worries that overwhelm you Sometimes have worries that overwhelm you AN 3,2 Sometimes have worries that overwhelm you Often have worries that overwhelm you AN 3,3 Often have worries that overwhelm you Always have worries that overwhelm you AN 3,4 Not feel uneasy Rarely feel uneasy AN 4,1 Rarely feel uneasy Sometimes feel uneasy AN 4,2 Sometimes feel uneasy Often feel uneasy AN 4,3 Often feel uneasy Always feel uneasy AN 4,4 DEPRESSION (DP) Not feel worthless Rarely feel worthless DP 1,1 Rarely feel worthless Sometimes feel worthless DP 1,2 Sometimes feel worthless Often feel worthless DP 1,3 Often feel worthless Always feel worthless DP 1,4 Not feel helpless Rarely feel helpless DP 2,1 Rarely feel helpless Sometimes feel helpless DP 2,2 Sometimes feel helpless Often feel helpless DP 2,3 Often feel helpless Always feel helpless DP 2,4 Not feel depressed Rarely feel depressed DP 3,1 Rarely feel depressed Sometimes feel depressed DP 3,2 Sometimes feel depressed Often feel depressed DP 3,3 Often feel depressed Always feel depressed DP 3,4 Not feel hopeless Rarely feel hopeless DP 4,1 Rarely feel hopeless Sometimes feel hopeless DP 4,2 Sometimes feel hopeless Often feel hopeless DP 4,3 Often feel hopeless Always feel hopeless DP 4,4 other than your anxiety AN 2,3 Always find it hard to focus on anything other than your anxiety AN 2,4 5

6 Table 3 English Adjectival Statements and Values: PN+DS, AX+DE, AX+AN j, DE+DP j, AX+AN j +DE+DP j Better Health Worse Health Value PAIN AND DISCOMFORT No pain and no discomfort Slight pain and slight discomfort PN 1+DS 1 Slight pain and slight discomfort Moderate pain and moderate discomfort PN 2+DS 2 Moderate pain and moderate discomfort Severe pain and severe discomfort PN 3+DS 3 Severe pain and severe discomfort Extreme pain and extreme discomfort PN 4+DS 4 ANXIETY AND DEPRESSION Not anxious and not depressed Slightly anxious and slightly depressed AX 1+DE 1 Slightly anxious and slightly depressed Moderately anxious and moderately depressed AX 2+DE 2 Moderately anxious and moderately depressed Severely anxious and severely depressed AX 3+DE 3 Severely anxious and severely depressed Extremely anxious and extremely depressed AX 4+DE 4 ANXIETY SEVERITY AND FREQUENCY Not anxious; Not fearful and uneasy, Slightly anxious; Rarely fearful and uneasy, AX 1+AN j,1 not have worries that overwhelm you, and rarely have worries that overwhelm you, and not find it hard to focus due to anxiety rarely find it hard to focus due to anxiety Slightly anxious; Rarely fearful and uneasy, Moderately anxious; Sometimes fearful and uneasy AX 2+AN j,2 rarely have worries that overwhelm you, and sometimes have worries that overwhelm you, and rarely find it hard to focus due to anxiety sometimes find it hard to focus due to anxiety Moderately anxious; Sometimes fearful and uneasy Severely anxious; Often fearful and uneasy AX 3+AN j,3 sometimes have worries that overwhelm you, and often have worries that overwhelm you, and sometimes find it hard to focus due to anxiety often find it hard to focus due to anxiety Severely anxious; Often fearful and uneasy Extremely anxious; Always fearful and uneasy AX 4+AN j,4 often have worries that overwhelm you, and always have worries that overwhelm you, and often find it hard to focus due to anxiety always find it hard to focus due to anxiety DEPRESSION SEVERITY AND FREQUENCY Not depressed; Slightly and rarely depressed; DE 1+DP j,1 not feel worthless, helpless, and hopeless rarely feel worthless, helpless, and hopeless Slightly and rarely depressed; Moderately and sometimes depressed; DE 2+DP j,2 rarely feel worthless, helpless, and hopeless sometimes feel worthless, helpless, and hopeless Moderately and sometimes depressed; Severely and often depressed; DE 3+DP j,3 sometimes feel worthless, helpless, and hopeless often feel worthless, helpless, and hopeless Severely and often depressed; Extremely and always depressed; DE 4+DP j,4 often feel worthless, helpless, and hopeless always feel worthless, helpless, and hopeless ANXIETY AND DEPRESSION SEVERITY AND FREQUENCY Not anxious or depressed; Slightly and rarely anxious and depressed; AX 1+AN j,1+ not feel worthless, helpless, hopeless, rarely feel worthless, helpless, hopeless, DE 1+DP j,1 fearful and uneasy, not have worries, and fearful and uneasy, rarely have worries, and not find it hard to focus due to anxiety rarely find it hard to focus due to anxiety Slightly and rarely anxious and depressed; Moderately and sometimes anxious and depressed; AX 2+AN j,2+ rarely feel worthless, helpless, hopeless, sometimes feel worthless, helpless, hopeless, DE 2+DP j,2 fearful and uneasy, rarely have worries, and fearful and uneasy, sometimes have worries, and rarely find it hard to focus due to anxiety sometimes find it hard to focus due to anxiety Moderately and sometimes anxious and depressed; Severely and often anxious and depressed; AX 3+AN j,3+ sometimes feel worthless, helpless, hopeless, often feel worthless, helpless, hopeless, DE 3+DP j,3 fearful and uneasy, sometimes have worries, and fearful and uneasy, often have worries, and sometimes find it hard to focus due to anxiety often find it hard to focus due to anxiety Severely and often anxious and depressed; Extremely and always anxious and depressed; AX 4+AN j,4+ often feel worthless, helpless, hopeless, always feel worthless, helpless, hopeless, DE 4+DP j,4 fearful and uneasy, often have worries, and fearful and uneasy, always have worries, and often find it hard to focus due to anxiety always find it hard to focus due to anxiety 6

7 Section 3: Pair Selection Set #1 Items within DP (42 Pairs) Table 4. Symmetric Item Pairs: DP Alternative A Alternative B DP 2, 1 DP 1, 1 DP 2, 2 DP 1, 2 DP 2, 3 DP 1, 3 DP 2, 4 DP 1, 4 DP 3, 1 DP 1, 1 DP 3, 1 DP 2, 1 DP 3, 2 DP 1, 2 DP 3, 2 DP 2, 2 DP 3, 3 DP 1, 3 DP 3, 3 DP 2, 3 DP 3, 4 DP 1, 4 DP 3, 4 DP 2, 4 DP 4, 1 DP 1, 1 DP 4, 1 DP 2, 1 DP 4, 1 DP 3, 1 DP 4, 2 DP 1, 2 DP 4, 2 DP 2, 2 DP 4, 2 DP 3, 2 DP 4, 3 DP 1, 3 DP 4, 3 DP 2, 3 DP 4, 3 DP 3, 3 DP 4, 4 DP 1, 4 DP 4, 4 DP 2, 4 DP 4, 4 DP 3, 4 Set #2 DE vs. DP j (9 Pairs) Table 6. Depression Severity vs. Frequency Alternative A Alternative B DE 2 DP j, 2 DE 3 DP j, 3 DE 4 DP j, 4 DE 2 DP j, 3 DE 3 DP j, 2 DE 3 DP j, 4 DE 4 DP j, 3 DE 2 +DE 3 DP j, 2 +DP j, 3 DE 3 +DE 4 DP j,3 +DP j, 4 Table 5. Asymmetric Item Pairs: DP Alternative A Alternative B DP 3, 1 DP 1, 2 DP 3, 1 DP 2, 2 DP 3, 1 DP 4, 2 DP 3, 3 DP 1, 4 DP 3, 3 DP 2, 4 DP 3, 3 DP 4, 4 DP 3, 2 DP 1, 1 DP 3, 2 DP 2, 1 DP 3, 2 DP 4, 1 DP 3, 4 DP 1, 3 DP 3, 4 DP 2, 3 DP 3, 4 DP 4, 3 7

8 Set #3 Items within AN (36 Pairs) Table 7. Symmetric Item Pairs: AN Alternative A Alternative B AN 2, 1 AN 1, 1 AN 2, 2 AN 1, 2 AN 2, 3 AN 1, 3 AN 2, 4 AN 1, 4 AN 3, 1 AN 1, 1 AN 3, 1 AN 2, 1 AN 3, 2 AN 1, 2 AN 3, 2 AN 2, 2 AN 3, 3 AN 1, 3 AN 3, 3 AN 2, 3 AN 3, 4 AN 1, 4 AN 3, 4 AN 2, 4 AN 4, 1 AN 1, 1 AN 4, 1 AN 2, 1 AN 4, 1 AN 3, 1 AN 4, 2 AN 1, 2 AN 4, 2 AN 2, 2 AN 4, 2 AN 3, 2 AN 4, 3 AN 1, 3 AN 4, 3 AN 2, 3 AN 4, 3 AN 3, 3 AN 4, 4 AN 1, 4 AN 4, 4 AN 2, 4 AN 4, 4 AN 3, 4 Set #4 AX vs. AN j (9 Pairs) Table 9. Anxiety Severity vs. Frequency Alternative A Alternative B AX 2 AN j, 2 AX 3 AN j, 3 AX 4 AN j, 4 AX 2 AN j, 3 AX 3 AN j, 2 AX 3 AN j, 4 AX 4 AN j, 3 AX 2 +AX 3 AN j, 2 +AN j, 3 AX 3 +AX 4 AN j,3 +AN j, 4 Table 8. Asymmetric Item Pairs: AN Alternative A Alternative B AN 4, 1 AN 1, 2 AN 4, 1 AN 2, 2 AN 4, 1 AN 3, 2 AN 4, 3 AN 1, 4 AN 4, 3 AN 2, 4 AN 4, 3 AN 3, 4 AN 4, 2 AN 1, 1 AN 4, 2 AN 2, 1 AN 4, 2 AN 3, 1 AN 4, 4 AN 1, 3 AN 4, 4 AN 2, 3 AN 4, 4 AN 3, 3 8

9 Sets #5 -#13 The following 9 Sets have the same 11 pairs (Table 6), creating 99 pairs: Set #5 AX vs DE Set #6 AX+AN j vs DE+DP j Set #7 PN vs DS Set #8 AD vs PD Set #9 AD vs PN + DS Set #10 AX + DE vs PD Set #11 AX + DE vs PN + DS Set #12 AX + DE + AN j + DP j vs PD Set #13 AX + DE + AN j + DP j vs PN + DS Table unrelated 5-level domains (11 pairs) Alternative A Alternative B X 1 Y 1 X 2 Y 2 X 3 Y 3 X 4 Y 4 X 1 +X 2 Y 1 +Y 2 X 2 +X 3 Y 2 +Y 3 X 3 +X 4 Y 3 +Y 4 X 1 +X 2 Y 2 +Y 3 X 2 +X 3 Y 1 +Y 2 X 2 +X 3 Y 3 +Y 4 X 3 +X 4 Y 2 +Y 3 Set #14 Minimum Anxiety and Depression This set of 5 pairs identifies the smallest possible loss related to either depression or anxiety. DE 1 + DP 3,1 vs AX 1 + AN 4,1 DE 1 + DP 3,1 vs AX 1 + AN j,1 DE 1 + DP 3,1 vs AX 2 + AN j,2 DE 1 + DP j,1 vs AX 1 + AN 4,1 DE 2 + DP j,2 vs AX 1 + AN 4,1 Set #15 Logical Inconsistency This set includes logical consistency pairs. Unlike bipedal pairs, logical consistency pairs have only 1 attribute and assess whether preferences agree with the adjectival scale. Also, each of the seven pairs (MO 4, SC 4, UA 4, PD 4, AD 4, AX 4, DE 4 and AX 4 + DE 4 ) will be sampled using 100 respondents such that a respondent gets a maximum of 2 logical consistency pairs (i.e., 350 respondents with 2 LC pairs =700 LC responses). Overview For PCOV-AD, 203 pairs were selected (Tables 4-10): #1+#2 (45 pairs); #3+#4 (45 pairs); #5 to #13 (99 pairs); #13 (5 pairs) and #14 (7 pairs). Each pair in Set #1 to #13 will have 50 responses and each pair of the 7 pairs in Set #14 will have 100 responses. Therefore the PCOV-AD will have 10,500 pair responses ( ). Aside from the 3 examples, respondents complete 30 paired comparisons per DCE component; therefore, the study will require 350 respondents (10,500/30). Using this design, 350 patients at Moffitt Cancer Center and 350 respondents at nursing homes in Rio de Janeiro will complete a minimum of 1 DCE component (i.e., 28 health pairs and 2 logical consistency pairs). 9

10 Section 4: PCOV-AD Survey Statements in English and Portuguese English Portuguese Intro Please confirm that you understand each of the following: Por favor confirme que compreende cada uma das seguintes I will be asked questions about my health problems, and afirmações: understand that this may cause me some stress. Serei questionado acerca dos meus problemas de saúde e sei I will be asked to think about other health problems and que isto pode causar-me algum estresse. understand that this may cause me some stress. Serei convidado a pensar acerca de outros problemas de saúde I can take a break or stop participating at any time. ee compreendo que isto possa causa-me algum estresse. My participation and responses to the questions in this Posso desistir de participar a qualquer momento. survey will not affect my treatment in any way. A minha participação e respostas ás questões desta pesquisa não irão afetar a minha rotina nas casas de convivência. Directions: You will need at least 15 minutes for this survey. Some of the questions may seem repetitive because we are trying out alternative wording of questions. It is important that you answer every question carefully. Instruções: Você precisará de cerca de 15 minutos para completar este questionário. Algumas questões podem parecer repetitivas porque estamos tentando/experimentando formulações aternativas das questões. É importante que você responda cuidadosamente a todas as questões. For the following health questions, each page will automatically advance after response. If you wish, click the back button to change your response. Para o próximo grupo de questões sobre saúde, cada página irá avançar automáticamente depois que você responder. Se desejar, clique no botão voltar para modificar a sua resposta. Button Labels Back Next Submit Close Save Example X of X Number X of X Voltar Próxima Submeter Fechar Salvar Exemplo X de X Número X de X Question ID Code Identificação/ID General Health In general, would you say your health is: Excellent Very good Good Fair Poor Em geral você diria que sua saúde é: Excelente Muito Boa Boa Ruim Muito Ruim 10

11 EQ-5D-3L Which statement best describes your own health state today? Mobility Mobility I have no problems in walking about I have some problems in walking about I am confined to bed Self-Care I have no problems with self-care I have some problems washing or dressing myself I am unable to wash or dress myself Usual Activities (e.g. work, study, housework, family or leisure activities) I have no problems with performing my usual activities I have some problems with performing my usual activities I am unable to perform my usual activities Pain/Discomfort I have no pain or discomfort I have moderate pain or discomfort I have extreme pain or discomfort Anxiety/Depression I am not anxious or depressed I am moderately anxious or depressed I am extremely anxious or depressed Qual das afirmações melhor descreve o seu estado de saúde hoje? Mobilidade Não tenho problemas em andar Tenho alguns problemas em andar Estou limitado a ficar na cama Cuidados pessoais Não tenho problemas com os meus cuidados pessoais Tenho alguns problemas para me lavar ou me vestir Sou incapaz de me lavar ou vestir sozinho Atividades habituais (ex. trabalho, estudos, atividades domésticas, atividades em família ou de lazer) Não tenho problemas em desempenhar as minhas atividades habituais Tenho alguns problemas em desempenhar as minhas atividades habituais Sou incapaz de desempenhar as minhas atividades habituais Dor/Mal-estar Não tenho dores ou mal-estar Tenho dores ou mal-estar moderados Tenho dores ou mal-estar extremos Ansiedade/Depressão Não estou ansioso(a) ou deprimido(a) Estou moderadamente ansioso(a) ou deprimido(a) Estou extremamente ansioso(a) ou deprimido(a) 11

12 EQ-5D-5L Which statement best describes your own health state today? Mobility I have no problems in walking about I have slight problems in walking about I have moderate problems in walking about I have severe problems in walking about I am unable to walk about Self-care I have no problems washing or dressing myself I have slight problems washing or dressing myself I have moderate problems washing or dressing myself I have severe problems washing or dressing myself I am unable to wash or dress myself Usual activities (e.g. work, study, housework, family or leisure activities) I have no problems doing my usual activities I have slight problems doing my usual activities I have moderate problems doing my usual activities I have severe problems doing my usual activities I am unable to do my usual activities Pain / discomfort I have no pain or discomfort I have slight pain or discomfort I have moderate pain or discomfort I have severe pain or discomfort I have extreme pain or discomfort Anxiety / depression I am not anxious or depressed I am slightly anxious or depressed I am moderately anxious or depressed I am severely anxious or depressed I am extremely anxious or depressed Qual das afirmações melhor descreve o seu estado de saúde hoje? Mobilidade Não tenho problemas em andar Tenho problemas leves em andar Tenho problemas moderados em andar Tenho problemas graves em andar Não consigo andar Cuidados pessoais Não tenho problemas para me lavar ou me vestir Tenho problemas leves para me lavar ou me vestir Tenho problemas moderados para me lavar ou me vestir Tenho problemas graves para me lavar ou me vestir Sou incapaz de me lavar ou vestir sozinho/a Atividades habituais (ex. trabalho, estudos, atividades domésticas, atividades em família ou de lazer) Não tenho problemas em realizar as minhas atividades habituais Tenho problemas leves em realizar as minhas atividades habituais Tenho problemas moderados em realizar as minhas atividades habituais Tenho problemas graves em realizar as minhas atividades habituais Sou incapaz de realizar as minhas atividades habituais Dor e Mal-estar Não tenho dores ou mal-estar Tenho dores ou mal-estar leves Tenho dores ou mal-estar moderados Tenho dores ou mal-estar graves Tenho dores ou mal-estar extremos Ansiedade/depressão Não estou ansioso/a ou deprimido/a Estou levemente ansioso/a ou deprimido/a Estou moderadamente ansioso/a ou deprimido/a Estou gravemente ansioso/a ou deprimido/a Estou extremamente ansioso/a ou deprimido/a 12

13 PROMIS Depression In the past 7 days 1. I felt worthless Never Rarely Sometimes Often Always 2. I felt helpless Never Rarely Sometimes Often Always 3. I felt depressed Never Rarely Sometimes Often Always 4. I felt hopeless Never Rarely Sometimes Often Always Nos ultimos 7 dias 1. Senti-me sem valor e sem importância (inútil para as pessoas) Nunca Raramente Algumas vezes Muitas vezes Sempre 2. Senti-me incapaz Nunca Raramente Algumas vezes Muitas vezes Sempre 3.Senti-me deprimido Nunca Raramente Algumas vezes Muitas vezes Sempre 4.Senti-me sem esperança Nunca Raramente Algumas vezes Muitas vezes Sempre 13

14 PROMIS Anxiety In the past 7 days 1. I felt fearful Never Rarely Sometimes Often Always 2. I found it hard to focus on anything other than my anxiety Never Rarely Sometimes Often Always 3. My worries overwhelmed me Never Rarely Sometimes Often Always 4. I felt uneasy Never Rarely Sometimes Often Always Nos ultimos 7 dias 1. Senti-me apreensivo(a) Nunca Raramente Algumas vezes Muitas vezes Sempre 2. Achei difícil concentrar-me em qualquer coisa a não ser na minha ansiedade Nunca Raramente Algumas vezes Muitas vezes Sempre 3. As minhas preocupações dominaram-me completamente Nunca Raramente Algumas vezes Muitas vezes Sempre 4. Senti-me angustiado(a) Nunca Raramente Algumas vezes Muitas vezes Sempre 14

15 VAS We would like to know how good or bad your health is TODAY. This scale is numbered from 0 to means the best health you can imagine. 0 means the worst health you can imagine. Move the slider on the scale to indicate how your health is TODAY. Labels: The worst health you can imagine YOUR HEALTH TODAY = The best health you can imagine Nós gostaríamos de saber o quão boa ou ruim a sua saúde está HOJE. Esta escala é numerada de 0 a significa a melhor saúde que você possa imaginar. 0 significa a pior saúde que você possa imaginar. Mova o cursorda escala de modo a indicarcomo está a sua saúde HOJE. Agora, por favor escreva no quadrado abaixo o número que você marcou na escala. Labels: Melhor estado de saúde qu voçê possa imaginar A SUA SAÚDE HOJE= Pior estado de saúde que você possa imaginar DCE Section 2: Paired Comparisons The next questions ask about your health preferences. Specifically, you will read 2 health descriptions and be asked to choose which you prefer. The descriptions are from actual events. Understanding your preferences is critically important for improving health services. A paired comparison is a choice between two alternative items. You choose by clicking on the item you prefer. For example, which fruit do you prefer? The next 2 examples are paired comparisons that describe your health. Imagine that your health is the same except for the problems described and that there are no differences before or after these problems. Remember that you must choose the health you prefer from your current perspective and that the descriptions are from actual events. Which do you prefer? You likely prefer fair health over poor health, and clicked on fair health. The next example is more challenging than this one. This "bad versus poor" example is more challenging because the descriptions are more similar. Sometimes the descriptions may not make sense and your choice may not be clear. However, we ask that you choose by clicking on the health you prefer. Questions may seem to repeat previous descriptions because we are trying out alternative wording. You will now read a series of 30 paired comparisons that describe your health. Imagine that your health is the same except for the Secção 2: comparações pareadas. As próximas perguntas são sobre as suas preferências em saúde. Especificamente, você lerá duas descrições de saúde e será convidado a escolher qual você prefere. As descrições são de eventos reais.compreender as suas preferências é extremamente importante para a melhoria dos serviços de saúde. A comparação pareada é uma escolha entre duas alternativas. Você escolhe clicando no item que você preferir. Por exemplo, que fruta você prefere? Os próximos 2 exemplos consistem em comparações pareadas que descrevem a sua saúde. Imagine que a sua saúde é a mesma, com exceção aos problemas descritos e de que não há diferenças antes ou depois destas problems. Lembre-se de que você deve escolher a saúde de sua preferência a partir da sua perspectiva atual e que as descrições são de acontecimentos reais. Qual você prefere? Você provavelmente prefere saúde razoável a saúde debilitada, e por isso selecionou a opção saúde razoável. O próximo exemplo é mais desafiador do que este. Este exemplo "mau vs. fraco" é mais difícil porque as descrições são similares. Ás vezes as descrições podem não fazer sentido e a sua escolha pode não ser clara.contudo, pedimos que você escolher, clicando sobre a saúde que você prefer. Algumas questões podem parecer repetitivas porque estamos tentando/experimentando formulações aternativas. Agora você vai ler uma série de 30 comparações pareadas que descrevem a sua saúde. Imagine que a sua saúde é a mesma, exceto para os 15

16 problems described and that there are no differences after these problems. The descriptions are from actual events. You must choose the health you would prefer from your current perspective. Understanding your preferences is critically important to improve health services. Congratulations! You have just completed your first set of 30 pairs. second set third set fourth set fifth set sixth set final set Your participation is GREATLY appreciated. Respondents like YOU help us better understand health preferences, and how we can improve the quality of health care for all patients. Would you like to leave a comment at this time? Please enter any comments and/or suggestions you have regarding this survey. Your perspective is important and contributes GREATLY to our research. We encourage you to continue. Would you please complete 30 more paired comparisons? Yes No How easy or hard was it for you to respond to the survey questions Very easy Easy Neither easy nor hard Hard Very hard Thank you for your participation! You have completed the entire survey. You may close your web browser at any time. problemas descritos e que não existem diferenças após esses problemas. As descrições são de acontecimentos reais. Você deve escolher a saúde que você preferir a partir de sua perspectiva atual. Compreender as suas preferências é muito importante para a melhoria dos serviços de saúde. Parabéns! Você acabou de completar o seu primeiro conjunto de 30 pares. segundo conjunto terceiro conjunto quarto conjunto quinto conjunto sexto conjunto conjunto final A sua participação é MUITO importante. Pessoas como VOCÊ ajudam-nos a entender melhor as preferências em saúde, e como podemos melhorar a qualidade dos cuidados de saúde para todos os pacientes. Gostaria de deixar um comentário neste momento? Por favor ensira qualquer comentário e/ou sugestão relativa a esta pesquisa A sua perspectiva/opinião é importante e contribue grandemente para a nossa pesquisa. Nos o encorajamos a continuar. Você poderia, por favor, completar mais 30 comparações pareadas? Sim Não Quão fácil ou dificil fo para você responder a este questionário? Muito fácil Fácil Nem fácil nem difícil Difícil Muito difícil Muito obrigado pela sua participação! Você completou todo o questionário. Você pode fechar o browser a qualquer momento. 16