Assessing Preferences in Patients with Head and Neck Squamous Cell Carcinoma: Phase I and II of Questionnaire Development
Abstract
:Simple Summary
Abstract
1. Introduction
2. Results
2.1. Identification of QoL Issues Pertaining to Patient Preferences (Phase I)
2.1.1. Literature Search
2.1.2. Definition of a Consolidated List of Issues
2.1.3. Patient Characteristics
2.1.4. Analysis of Patient Preferences
2.2. Creation of a List of Items Pertaining to Patient Preferences (Phase II)
3. Discussion
4. Materials and Methods
4.1. Identification of Issues Pertaining to Patients′ Preferences (Phase I)
4.1.1. Semi-Structured Interview (Phase I)
4.1.2. Patient Selection (Phase I)
4.1.3. Data Collection and Statistical Analysis
4.2. Construction of an Item List (phase II)
4.3. Ethics Statement
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Conflicts of Interest
References
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# | Issues Retrieved From the Systematic Review | Steering Committee Decision | Consolidated List of Issues |
---|---|---|---|
1 | Cure of disease | Keep | Cure of disease |
2 | Survival (live as long as possible) | Keep | Survival (live as long as possible) |
3 | Pain | Change | No pain |
4 | Normal amount of energy | Keep | Normal amount of energy |
5 | Recovery to regular activities (ability to perform daily activities) | Change | Ability to perform daily activities |
6 | Swallowing solid foods | Merge #6 and #7 | Ability to swallow |
7 | Swallowing liquids | Merge #6 and #7 | |
8 | Natural (normal) voice | Change | Normal voice |
9 | Unchanged appearance (absence of body mutilation) (cancer consequences not evident to others) | Change | Unchanged appearance of face |
10 | To be understood | Remove (overlap with normal voice) | |
11 | Normal chewing | Keep | Normal chewing |
12 | Normal taste | Keep | Normal taste |
13 | Normal smell | Keep | Normal smell |
14 | Moist mouth | Keep | Moist mouth |
15 | Normal breathing through mouth and nose | Keep | Normal breathing through mouth and nose |
16 | Tracheostomy | Remove (overlap with normal breathing) | |
17 | Inflammation of the mouth | Change | Burning mouth |
18 | Dry mouth | Remove (overlap moist mouth) | |
19 | Dealing well with anxiety | Change | Cope with anxiety |
20 | Dealing well with sadness | Change | No depression |
21 | Stable financial conditions | Remove (overlap) | |
22 | Trusting in health care providers | Keep | Trusting in health care providers |
23 | Financial worries for cancer care and follow-up treatments | Change | No financial worries for cancer care/follow-up and for cancer consequences |
24 | Normal well-being of caregivers | Change | Not being a burden to others |
25 | Decrease of symptoms | Remove (too generic) | |
26 | Side effects due to chemotherapy | Remove (redundant and too generic) | |
27 | Affect day-to-day living activities | Remove (overlap) | |
28 | Spend time in hospital due to side effects | Change | Spend no time in hospital due to side effects |
29 | Spend money for the treatment | Remove (overlap) | |
30 | Social function | Change | Social role |
31 | Dental health/teeth | Change | Normal dental health |
32 | Salivation | Remove (overlap) | |
33 | Being treated closer to home | Keep | Being treated closer to home |
35 | Frequency of follow up visits | Remove | |
36 | Frequency of radiological examinations | Remove | |
37 | Social isolation | Change | Social life |
38 | Respect for desires and dignity | Keep | Respect for desires and dignity |
Added by the Steering Committee: | |||
39 | Intimacy | ||
40 | Being thoroughly and sincerely informed about treatments’ efficacy and survival expectation |
# | List of Issues Concerning Patient Preferences |
---|---|
1 | Cure of disease |
2 | Survival (live as long as possible) |
3 | No pain |
4 | Normal amount of energy |
5 | Ability to perform daily activities |
6 | Ability to swallow |
7 | Normal voice |
8 | Unchanged appearance of face |
9 | Normal chewing |
10 | Normal taste |
11 | Normal smell |
12 | Moist mouth |
13 | Normal breathing through mouth and nose |
14 | Burning mouth |
15 | Cope with anxiety |
16 | No depression |
17 | Trusting in health care providers |
18 | No financial worries for cancer care/follow-up and for cancer consequences |
19 | Not being a burden to others |
20 | Spend no time in hospital due to side effects |
21 | Social role |
22 | Normal dental health |
23 | Being treated closer to home |
24 | Social life |
25 | Respect for desires and dignity |
26 | Intimacy |
27 | Sexuality |
28 | Being thoroughly and sincerely informed about treatments’ efficacy and survival expectation |
Patient Characteristics | ||
---|---|---|
Center | N | % |
Brescia (ITA) | 32 | 28.8 |
Florence (ITA) | 10 | 9.0 |
Milan (ITA) | 22 | 19.8 |
Mainz (GER) | 10 | 9.0 |
Sao Paulo (BRA) | 15 | 13.6 |
Nashville (USA) | 20 | 18.0 |
Athens (GRE) | 2 | 1.8 |
Treatment subgroup * | ||
Curative | 30 | 34.1 |
Follow-up | 38 | 43.2 |
Palliative | 20 | 22.7 |
Gender * | ||
Female | 27 | 30.3 |
Male | 62 | 69.7 |
Age | ||
(median 63 y) * | ||
<70 | 65 | 74.7 |
>70 | 22 | 25.3 |
Education level * | ||
(years) | ||
<10 | 30 | 35.7 |
=10 | 23 | 27.4 |
>10 | 31 | 36.9 |
Caregiver * | ||
No | 29 | 38.2 |
Yes | 47 | 61.2 |
Living situation * | ||
Lives alone | 13 | 14.3 |
Lives with partner | 56 | 61.5 |
Lives with other people | 6 | 6.6 |
Unknown | 16 | 17.6 |
Issue | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | ||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Score | n | % | n | % | n | % | n | % | n | % | n | % | n | % | n | % | n | % | n | % |
1 | 0 | 0 | 1 | 0.9 | 5 | 4.6 | 2 | 1.8 | 1 | 0.9 | 6 | 5.5 | 10 | 9.3 | 9 | 8.3 | 6 | 5.5 | 5 | 4.5 |
2 | 2 | 1.8 | 1 | 0.9 | 14 | 13 | 15 | 13.8 | 6 | 5.5 | 10 | 9.1 | 19 | 17.6 | 19 | 17.6 | 11 | 10.1 | 19 | 17.3 |
3 | 4 | 3.6 | 10 | 9.1 | 32 | 29.6 | 48 | 44 | 40 | 36.7 | 30 | 27.3 | 32 | 29.6 | 29 | 26.9 | 41 | 37.6 | 31 | 28.2 |
4 | 104 | 94.6 | 98 | 89.1 | 57 | 52.8 | 44 | 40.4 | 62 | 56.9 | 64 | 58.1 | 47 | 43.5 | 51 | 47.2 | 51 | 46.8 | 55 | 50 |
Total | 110 | 110 | 108 | 109 | 109 | 110 | 108 | 108 | 109 | 110 | ||||||||||
Median | 4 | 4 | 4 | 3 | 4 | 4 | 3 | 3 | 3 | 3 | ||||||||||
Mode | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 4 | 4 | 4 | ||||||||||
Range | 24 | 1–4 | 1–4 | 1–4 | 1–4 | 1–4 | 1–4 | 1–4 | 1–4 | 1–4 | ||||||||||
IQR | 0 | 0 | 1 | 1 | 1 | 1 | 2 | 2 | 1 | 1 | ||||||||||
Preference | 96 | 81 | 63 | 38 | 63 | 58 | 24 | 26 | 34 | 24 | ||||||||||
(%) | (87.3) | (73.6) | (58.3) | (34.9) | (57.8) | (52.7) | (22.2) | (24.1) | (31.2) | (21.8) | ||||||||||
Issue | 11 | 12 | 13 | 14 | 15 | 16 | 17 | 18 | 19 | 20 | ||||||||||
Score | n | % | n | % | n | % | n | % | n | % | n | % | n | % | n | % | n | % | n | % |
1 | 10 | 9.2 | 6 | 5.5 | 6 | 5.5 | 11 | 10.1 | 13 | 12 | 12 | 11.1 | 0 | 0 | 10 | 9.3 | 9 | 8.3 | 9 | 8.4 |
2 | 17 | 15.6 | 21 | 19.1 | 7 | 6.4 | 21 | 19.3 | 21 | 19.4 | 22 | 20.4 | 5 | 4.5 | 13 | 12.1 | 12 | 11 | 20 | 18.7 |
3 | 34 | 31.2 | 27 | 24.5 | 24 | 22 | 30 | 27.5 | 29 | 26.9 | 22 | 20.4 | 11 | 10 | 24 | 22.4 | 21 | 19.3 | 28 | 26.2 |
4 | 48 | 44 | 56 | 50.9 | 72 | 66.1 | 47 | 43.1 | 45 | 41.7 | 52 | 48.1 | 94 | 85.5 | 60 | 56.1 | 67 | 61.4 | 50 | 46.7 |
Total | 109 | 100 | 109 | 109 | 108 | 108 | 110 | 107 | 109 | 107 | ||||||||||
Median | 3 | 4 | 4 | 3 | 3 | 3 | 4 | 4 | 4 | 3 | ||||||||||
Mode | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | ||||||||||
Range | 1–4 | 1–4 | 1–4 | 1–4 | 1–4 | 1–4 | 2–4 | 1–4 | 1–4 | 1–4 | ||||||||||
IQR | 2 | 1 | 1 | 2 | 2 | 2 | 0 | 1 | 1 | 2 | ||||||||||
preference | 10 | 21 | 56 | 17 | 28 | 33 | 65 | 32 | 45 | 29 | ||||||||||
(%) | (9.2) | (19.1) | (51.4) | (15.6) | (25.9) | (30.6) | (59.1) | (29.9) | (41.3) | (27.1) | ||||||||||
Issue | 21 | 22 | 23 | 24 | 25 | 26 | 27 | 28 | ||||||||||||
Score | n | % | n | % | n | % | n | % | n | % | n | % | n | % | n | % | ||||
1 | 12 | 11.1 | 12 | 11.3 | 24 | 22.6 | 8 | 7.5 | 4 | 3.7 | 7 | 6.6 | 16 | 15 | 4 | 3.8 | ||||
2 | 26 | 24.1 | 19 | 17.9 | 26 | 24.5 | 19 | 17.8 | 14 | 13 | 14 | 13.2 | 25 | 23.4 | 7 | 6.6 | ||||
3 | 34 | 31.5 | 31 | 29.2 | 21 | 19.8 | 32 | 29.9 | 31 | 28.7 | 35 | 33 | 28 | 26.2 | 13 | 12.3 | ||||
4 | 36 | 33.3 | 44 | 41.5 | 35 | 33.1 | 48 | 44.8 | 59 | 54.6 | 50 | 47.2 | 38 | 35.4 | 82 | 77.3 | ||||
Total | 108 | 106 | 106 | 107 | 108 | 106 | 107 | 106 | ||||||||||||
Median | 3 | 3 | 3 | 3 | 4 | 3 | 3 | 4 | ||||||||||||
Mode | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | ||||||||||||
Range | 1–4 | 1–4 | 1–4 | 1–4 | 1–4 | 1–4 | 1–4 | 1–4 | ||||||||||||
IQR | 2 | 2 | 2 | 2 | 1 | 1 | 2 | 0 | ||||||||||||
preference | 8 | 13 | 8 | 25 | 28 | 17 | 14 | 51 | ||||||||||||
(%) | (7.4) | (12.3) | (7.5) | (23.4) | (25.9) | (16) | (13.1) | (48.1) |
Issue Description | Issue | Curative (n = 30) n (%) | Follow-Up (n = 38) n (%) | Palliative (n = 20) n (%) | p-Value from Chi-Squared (Kendall Tau-b) | |
---|---|---|---|---|---|---|
n | Score | |||||
Ability to swallow | #6 | 1 | 2 (6.7) | 2 (5.4) | 0 (0) | 0.008 |
2 | 1 (3.3) | 6 (16.2) | 3 (15) | |||
3 | 3 (10) | 16 (43.2) | 4 (20) | |||
4 | 24 (80) | 13 (35.2) | 13 (65) | |||
Normal breathing through mouth and nose | #13 | 1 | 3 (10) | 1 (2.7) | 0 (0) | 0.009 |
2 | 1 (3.3) | 4 (10.8) | 0 (0) | |||
3 | 0 (0) | 9 (24.3) | 7 (35) | |||
4 | 26 (86.7) | 23 (62.2) | 13 (65) | |||
Burning mouth | #14 | 1 | 2 (6.7) | 4 (11.1) | 2 (10) | 0.041 |
2 | 1 (3.3) | 11 (30.6) | 4 (20) | |||
3 | 8 (26.7) | 10 (27.8) | 2 (10) | |||
4 | 19 (63.3) | 11 (30.5) | 12 60) | |||
No depression | #16 | 1 | 3 (10) | 3 (8.6) | 4 (20) | 0.046 |
2 | 3 (10) | 12 (34.3) | 1 (5) | |||
3 | 5 (16.7) | 7 (20) | 2 (10) | |||
4 | 19 (63.3) | 13 (37.1) | 13 (65) | |||
Spend no time in hospital due to side effects | #20 | 1 | 3 (10) | 4 (11.4) | 0 (0) | 0.029 |
2 | 0 (0) | 8 (22.9) | 3 (15) | |||
3 | 8 (26.7) | 12 (34.3) | 4 (20) | |||
4 | 19 (63.3) | 11 (31.4) | 13 (65) | |||
Being treated closer to home | #23 | 1 | 3 (10) | 12 (34.3) | 5 (25) | 0.06 (0.048) |
2 | 4 (13.3) | 10 (28.6) | 5 (25) | |||
3 | 8 (26.7) | 6 (17.1) | 2 (10) | |||
4 | 15 (50) | 7 (20) | 8 (40) | |||
Social life | #24 | 1 | 1 (3.3) | 3 (8.6) | 0 (0) | 0.15 (0.025) |
2 | 1 (3.3) | 6 (17.1) | 5 (25) | |||
3 | 7 (23.3) | 11 (31.4) | 6 (30) | |||
4 | 21 (70.1) | 15 (42.9) | 9 (45) | |||
Intimacy | #26 | 1 | 1 (3.3) | 1 (2.9) | 2 (10) | 0.06 (0.01) |
2 | 1 (3.3) | 6 (17.6) | 3 (15) | |||
3 | 6 (20) | 15 (44.1) | 6 (30) | |||
4 | 22 (73.4) | 12 (35.4) | 9 (45) | |||
Being thoroughly and sincerely informed about treatment’s efficacy and survival expectations | #28 | 1 | 0 (0) | 4 (11.4) | 0 (0) | 0.001 |
2 | 1 (3.3) | 0 (0) | 5 (25) | |||
3 | 2 (6.7) | 6 (17.1) | 0 (0) | |||
4 | 27 (90) | 25 (71.4) | 15 (75) |
# | Items Overall Question: to What Extent do You Consider the Following Items Relevant to You? | 1 = Not At All 2 = A Little 3 = Quite A Bit 4 = Very Much |
---|---|---|
1 | Cure of your disease | |
2 | Surviving your disease and living as long as possible | |
3 | Not feeling pain | |
4 | Keeping a normal amount of energy | |
5 | Ability to perform daily activities | |
6 | Ability to swallow | |
7 | Keeping a normal voice | |
8 | Keeping an unchanged appearance of your face | |
9 | Ability to chew normally | |
10 | Ability to taste normally | |
11 | Ability to smell normally | |
12 | Keeping a moist mouth | |
13 | Ability to breathe normally through mouth and nose | |
14 | Coping with anxiety | |
15 | Feeling not depressed | |
16 | Keeping trust in health care providers | |
17 | Not having financial worries with respect to your disease and its consequences | |
18 | Not being a burden to the others | |
19 | Not spending time in the hospital due to side effects | |
20 | Keeping a normal dental health | |
21 | Keeping a normal social life | |
22 | Having respect for your desires and dignity | |
23 | Keeping a normal sexuality | |
24 | Receiving information on the efficacy of your treatment and probability to survive in an open and sincere way |
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Bonomo, P.; Maruelli, A.; Saieva, C.; Taylor, K.; Singer, S.; Patelli, Z.; Rogers, S.; Mattavelli, D.; Simon, C.; Scotté, F.; et al. Assessing Preferences in Patients with Head and Neck Squamous Cell Carcinoma: Phase I and II of Questionnaire Development. Cancers 2020, 12, 3577. https://doi.org/10.3390/cancers12123577
Bonomo P, Maruelli A, Saieva C, Taylor K, Singer S, Patelli Z, Rogers S, Mattavelli D, Simon C, Scotté F, et al. Assessing Preferences in Patients with Head and Neck Squamous Cell Carcinoma: Phase I and II of Questionnaire Development. Cancers. 2020; 12(12):3577. https://doi.org/10.3390/cancers12123577
Chicago/Turabian StyleBonomo, Pierluigi, Alice Maruelli, Calogero Saieva, Katherine Taylor, Susanne Singer, Zaira Patelli, Simon Rogers, Davide Mattavelli, Christian Simon, Florian Scotté, and et al. 2020. "Assessing Preferences in Patients with Head and Neck Squamous Cell Carcinoma: Phase I and II of Questionnaire Development" Cancers 12, no. 12: 3577. https://doi.org/10.3390/cancers12123577