Make Sense: Head and neck cancer survivor survey

3. Have you finished treatment for your initial diagnosis? *This question is required.

• Yes
• No

4. Which one of the following statements most closely reflects the impact of your diagnosis of head and neck cancer on your emotional wellbeing post-treatment?
Please select one. Please feel free to expand in the comments.
  *This question is required.

• It has had a strongly positive impact on my emotional wellbeing.
• It has had a slightly positive impact on my emotional wellbeing.
• It has had a slightly negative impact on my emotional wellbeing.
• It has had a strongly negative impact on my emotional wellbeing.
• It has had little or no impact on my emotional wellbeing.

Comments

5. How much have the following feelings impacted your emotional wellbeing since your treatment for head and neck cancer ended?
Please rank from 1 to 5 with 1 being not impacted at all and 5 being heavily impacted.
  *This question is required.

Space Cell	1	2	3	4	5
Loneliness	Loneliness: 1	Loneliness: 2	Loneliness: 3	Loneliness: 4	Loneliness: 5
Fear of the future, recurrence	Fear of the future, recurrence: 1	Fear of the future, recurrence: 2	Fear of the future, recurrence: 3	Fear of the future, recurrence: 4	Fear of the future, recurrence: 5
Anxiety, worry	Anxiety, worry: 1	Anxiety, worry: 2	Anxiety, worry: 3	Anxiety, worry: 4	Anxiety, worry: 5
Depression, depressive symptoms	Depression, depressive symptoms: 1	Depression, depressive symptoms: 2	Depression, depressive symptoms: 3	Depression, depressive symptoms: 4	Depression, depressive symptoms: 5
Anger	Anger: 1	Anger: 2	Anger: 3	Anger: 4	Anger: 5
Guilt	Guilt: 1	Guilt: 2	Guilt: 3	Guilt: 4	Guilt: 5

Comments

6. How would you rate the support you have received for your emotional wellbeing since your treatment of head and neck cancer ended? *This question is required.

Excellent	Good	Average	Poor	Terrible
Excellent	Good	Average	Poor	Terrible

Comments

7. Physical impact overall
  *This question is required.

	1	2	3	4	5
Very positively impacted	1	2	3	4	5	Very negatively impacted

Physical symptoms - please rate the impact on each of the following. *This question is required.

Space Cell	1	2	3	4	5
Energy levels	Energy levels: 1	Energy levels: 2	Energy levels: 3	Energy levels: 4	Energy levels: 5
Speaking	Speaking: 1	Speaking: 2	Speaking: 3	Speaking: 4	Speaking: 5
Appetite	Appetite: 1	Appetite: 2	Appetite: 3	Appetite: 4	Appetite: 5
Eating/ drinking	Eating/ drinking: 1	Eating/ drinking: 2	Eating/ drinking: 3	Eating/ drinking: 4	Eating/ drinking: 5
Sense of taste/ smell	Sense of taste/ smell: 1	Sense of taste/ smell: 2	Sense of taste/ smell: 3	Sense of taste/ smell: 4	Sense of taste/ smell: 5
Breathing	Breathing: 1	Breathing: 2	Breathing: 3	Breathing: 4	Breathing: 5
Sleeping	Sleeping: 1	Sleeping: 2	Sleeping: 3	Sleeping: 4	Sleeping: 5
Physical appearance	Physical appearance: 1	Physical appearance: 2	Physical appearance: 3	Physical appearance: 4	Physical appearance: 5

Comments

To what extent do the physical effects (as listed above) of head and neck cancer currently affect your emotional wellbeing? *This question is required.

	1	2	3	4	5
Very positively impacted	1	2	3	4	5	Very negatively impacted

Comments

8. Social impact overall
  *This question is required.

	1	2	3	4	5
Very positively impacted	1	2	3	4	5	Very negatively impacted

Social activities - please rate the impact on each of the following. *This question is required.

Space Cell	1	2	3	4	5
Family relationships/ spending time with family	Family relationships/ spending time with family: 1	Family relationships/ spending time with family: 2	Family relationships/ spending time with family: 3	Family relationships/ spending time with family: 4	Family relationships/ spending time with family: 5
Friendship relationships/ spending time with friends	Friendship relationships/ spending time with friends: 1	Friendship relationships/ spending time with friends: 2	Friendship relationships/ spending time with friends: 3	Friendship relationships/ spending time with friends: 4	Friendship relationships/ spending time with friends: 5
Spending time doing things you enjoy/ hobbies	Spending time doing things you enjoy/ hobbies: 1	Spending time doing things you enjoy/ hobbies: 2	Spending time doing things you enjoy/ hobbies: 3	Spending time doing things you enjoy/ hobbies: 4	Spending time doing things you enjoy/ hobbies: 5

Comments

To what extent do the social effects (as listed above) of head and neck cancer currently affect your emotional wellbeing?

  *This question is required.

	1	2	3	4	5
Very positively impacted	1	2	3	4	5	Very negatively impacted

Comments

9. Professional/ financial impact overall
  *This question is required.

	1	2	3	4	5
Very positively impacted	1	2	3	4	5	Very negatively impacted

Professional/ financial activities - please rate the impact on each of the following. *This question is required.

Space Cell	1	2	3	4	5
Ability to work	Ability to work: 1	Ability to work: 2	Ability to work: 3	Ability to work: 4	Ability to work: 5
Ability to financially support yourself/ family	Ability to financially support yourself/ family: 1	Ability to financially support yourself/ family: 2	Ability to financially support yourself/ family: 3	Ability to financially support yourself/ family: 4	Ability to financially support yourself/ family: 5
Career progression/ ability to find employment	Career progression/ ability to find employment: 1	Career progression/ ability to find employment: 2	Career progression/ ability to find employment: 3	Career progression/ ability to find employment: 4	Career progression/ ability to find employment: 5
Career satisfaction	Career satisfaction: 1	Career satisfaction: 2	Career satisfaction: 3	Career satisfaction: 4	Career satisfaction: 5

Comments

To what extent do the professional/ financial effects (as listed above) of head and neck cancer currently affect your emotional wellbeing?

  *This question is required.

	1	2	3	4	5
Very positively impacted	1	2	3	4	5	Very negatively impacted

Comments

10. How comfortable do you feel in discussing the emotional impact of head and neck cancer with your healthcare provider?
Please select the statement that most closely reflects your feelings.
  *This question is required.

• I am very comfortable discussing the emotional impact with my healthcare provider.
• I am slightly comfortable discussing the emotional impact with my healthcare provider.
• I am slightly uncomfortable discussing the emotional impact with my healthcare provider.
• I am very uncomfortable discussing the emotional impact with my healthcare provider.

11. How would you rate the following resources in supporting your emotional well-being post-treatment for head and neck cancer?
Please tick the statement that most closely fits your experience for each resource and feel free to expand in the comments.
  *This question is required.

Space Cell	I have easy access to this, and I find it helpful	I have easy access to this, but do not find it helpful	I do not have easy access to this, and I would find it helpful	I do not have easy access to this, but I would not find it helpful
Reading materials on the long-term effects of head and neck cancer following treatment (e.g. pamphlets, websites)	Reading materials on the long-term effects of head and neck cancer following treatment (e.g. pamphlets, websites): I have easy access to this, and I find it helpful	Reading materials on the long-term effects of head and neck cancer following treatment (e.g. pamphlets, websites): I have easy access to this, but do not find it helpful	Reading materials on the long-term effects of head and neck cancer following treatment (e.g. pamphlets, websites): I do not have easy access to this, and I would find it helpful	Reading materials on the long-term effects of head and neck cancer following treatment (e.g. pamphlets, websites): I do not have easy access to this, but I would not find it helpful
Reading materials on long-term emotional impact of head and neck cancer (e.g. pamphlets, websites)	Reading materials on long-term emotional impact of head and neck cancer (e.g. pamphlets, websites): I have easy access to this, and I find it helpful	Reading materials on long-term emotional impact of head and neck cancer (e.g. pamphlets, websites): I have easy access to this, but do not find it helpful	Reading materials on long-term emotional impact of head and neck cancer (e.g. pamphlets, websites): I do not have easy access to this, and I would find it helpful	Reading materials on long-term emotional impact of head and neck cancer (e.g. pamphlets, websites): I do not have easy access to this, but I would not find it helpful
Family, friends	Family, friends: I have easy access to this, and I find it helpful	Family, friends: I have easy access to this, but do not find it helpful	Family, friends: I do not have easy access to this, and I would find it helpful	Family, friends: I do not have easy access to this, but I would not find it helpful
Mental health specialist	Mental health specialist: I have easy access to this, and I find it helpful	Mental health specialist: I have easy access to this, but do not find it helpful	Mental health specialist: I do not have easy access to this, and I would find it helpful	Mental health specialist: I do not have easy access to this, but I would not find it helpful
Peer to peer support groups	Peer to peer support groups: I have easy access to this, and I find it helpful	Peer to peer support groups: I have easy access to this, but do not find it helpful	Peer to peer support groups: I do not have easy access to this, and I would find it helpful	Peer to peer support groups: I do not have easy access to this, but I would not find it helpful
Digital tools for managing your own well-being (e.g. health apps)	Digital tools for managing your own well-being (e.g. health apps): I have easy access to this, and I find it helpful	Digital tools for managing your own well-being (e.g. health apps): I have easy access to this, but do not find it helpful	Digital tools for managing your own well-being (e.g. health apps): I do not have easy access to this, and I would find it helpful	Digital tools for managing your own well-being (e.g. health apps): I do not have easy access to this, but I would not find it helpful
Newspaper or magazine articles	Newspaper or magazine articles: I have easy access to this, and I find it helpful	Newspaper or magazine articles: I have easy access to this, but do not find it helpful	Newspaper or magazine articles: I do not have easy access to this, and I would find it helpful	Newspaper or magazine articles: I do not have easy access to this, but I would not find it helpful
Resources for carers or family/ friends in how to support you following treatment	Resources for carers or family/ friends in how to support you following treatment: I have easy access to this, and I find it helpful	Resources for carers or family/ friends in how to support you following treatment: I have easy access to this, but do not find it helpful	Resources for carers or family/ friends in how to support you following treatment: I do not have easy access to this, and I would find it helpful	Resources for carers or family/ friends in how to support you following treatment: I do not have easy access to this, but I would not find it helpful
Specialized nurses and social workers	Specialized nurses and social workers: I have easy access to this, and I find it helpful	Specialized nurses and social workers: I have easy access to this, but do not find it helpful	Specialized nurses and social workers: I do not have easy access to this, and I would find it helpful	Specialized nurses and social workers: I do not have easy access to this, but I would not find it helpful

12. Which one of the following statements most closely reflects the impact of the COVID-19 pandemic on your ability to access emotional support services post-treatment?
  *This question is required.

• The COVID-19 pandemic has had a strongly positive impact on my ability to access support services.
• The COVID-19 pandemic has had a slightly positive impact on my ability to access support services.
• The COVID-19 pandemic has had a slightly negative impact on my ability to access support services.
• The COVID-19 pandemic has had a strongly negative impact on my ability to access support services.
• The COVID-19 pandemic has had little or no impact on my ability to access support services.