A heregolyók rákjában túlélők támogató ellátási igényeinek és intervenciós preferenciáinak feltárása (PERSIST)

Testicular cancer survivors in the ACT-based coaching arm will learn new and more adaptive ways to respond to fear of cancer recurrence and other difficult internal experiences (e.g., thoughts, feelings, body sensations).

Across six weekly 90-minute online group sessions, testicular cancer survivors in the ACT coaching arm will practice various mindfulness exercises, clarify their values, and set specific values-based action goals in alignment with their values. Through in-session and home practice of skills, participants learn new and more adaptive ways to respond to fear of cancer recurrence and other difficult internal experiences (e.g., thoughts, feelings, body sensations). Participants receive handouts on session topics and a link to guided mindfulness practices developed by our team. Participants will be asked to track their home practices on provided logs.

Testicular cancer survivors in the education and support coaching arm will discuss their cancer-related concerns and receive education on supportive services and resources available locally and nationally.

Across six weekly 90-minute sessions, testicular cancer survivors in the education and support coaching arm are directed to resources for practical support, health information, and contact information for available community and national resources and support. Sessions include an orientation to testicular cancer survivorship and recurrence risks, education regarding common quality-of-life concerns experienced by cancer survivors, and an overview of community and national resources for addressing these concerns. Participants receive handouts summarizing session topics and are asked to review them as homework.

This 7-item measure includes 6 items assessing feelings associated with cancer recurrence and cognitive and behavioral responses to fear of cancer recurrence on 5-point scales (1=not at all to 5=all the time). Question 7 is a single item assessing the extent to which fear of cancer recurrence intrudes on thoughts and activities on a 0-10 scale (0=not at all to 10=a great deal). The 7 items are summed with higher total scores indicating greater fear of cancer recurrence. The total score range is from 6 to 40. This is the primary outcome measure.

This 42-item measure includes items assessing fear of cancer recurrence-related triggers (8 items), severity (9 items), psychological distress (4 items), functioning impairment (6 items), insight (3 items), reassurance seeking (3 items), and coping strategies (9 items). Items are rated on 5-point scales (0=never/not at all to 4=all the time/a great deal) to indicate the extent to which participants have felt fearful during the past month. Item #13 is reverse-scored and then the 42 items are summed with higher total scores indicating greater fear of cancer recurrence. The total score range is 0 to 168. This is a secondary outcome measure.

This retrospective global rating of improvement in fear of cancer recurrence provides a patient-centered approach to assessing change that is clinically meaningful. At each post-intervention time points, participants are asked, "Overall, since starting the study program, would you say that your fear of recurrence is: worse, about the same, or better?" Those reporting their fear of cancer recurrence as "better" are then asked if their fear is "a little better, somewhat better, moderately better, a lot better, or completely better." Responses are coded on a 7-point scale such that 0=worse, 1=about the same, 2=a little better, 3=somewhat better, 4=moderately better, 5=a lot better, and 6=completely better, with a higher score indicating greater improvement in fear of cancer recurrence since starting the study program to which they were randomly assigned. This is a secondary outcome measure.

Seven items are rated on 4-point scales (0=not at all to 3=nearly every day) to indicate how often in the past 2 weeks participants have been bothered by symptoms of anxiety. The 7 items are summed with higher total scores indicating greater anxiety. The total score range is 0 to 21. This is a secondary outcome measure.

Seven items are rated on 4-point scales (0=not at all to 3=nearly every day) to indicate how often in the past 2 weeks participants have been bothered by symptoms of anxiety. The 7 items are summed with higher total scores indicating greater anxiety. The total score range is 0 to 21. This is a secondary outcome measure.

Twenty-two items are rated on 5-point scales (0=not at all to 4=extremely) to indicate how often in the past 7 days participants have been bothered by post-traumatic stress symptoms, including experiences of intrusion, avoidance, and hyperarousal. The 22 items are summed with higher total scores indicating greater post-traumatic stress. The total score range is 0 to 88. This is a secondary outcome measure.

This 10-item measure assesses global health, including physical, mental, and social well-being. With the exception of pain, which is rated on a 0 to 10 scale, all items are rated on 5-point scales from 1 to 5. The item on pain is recoded from a 0-10 to a 1-5 scale and reverse scored. Two additional items are reverse scored. Four of the items are summed, with higher physical quality of life subscale scores indicating better physical quality of life. Four other items are also summed with higher psychological quality of life subscale scores indicating better psychological quality of life. The subscale scores are converted to T-scores with a range from 16.2 to 67.7 for physical quality of life and a range from 21.2 to 67.6 for psychological quality of life. Higher T-scores for the physical and psychological quality of life subscales indicate a better outcome. The population mean for T-scores is 50 with a standard deviation of 10. This is a secondary outcome measure.

This 4-item measure assesses the perceived interference of pain with functioning in several life domains in the past 7 days. Each item is rated on a 5-point scale (1=not at all to 5=very much). The 4 items are summed with higher total scores indicating greater pain-related interference. The total scores are converted to T-scores with a range from 41.6 to 75.6. Higher T-scores indicate a worse outcome. The population mean for T-scores is 50 with a standard deviation of 10.

This 4-item measure assesses perceived fatigue severity in the past 7 days. Each item is rated on a 5-point scale (1=not at all to 5=very much). The 4 items are summed with higher total scores indicating greater fatigue severity. The total scores are converted to T-scores with a range from 33.7 to 75.8. Higher T-scores indicate a worse outcome. The population mean for T-scores is 50 with a standard deviation of 10.

This 4-item measure assesses perceived sleep disturbance in the past 7 days. Each item is rated on a 5-point scale (1=not at all/very good to 5=very much/very poor). Two items (Sleep109, Sleep116) are reverse scored. The 4 items are summed with higher total scores indicating greater sleep disturbance. The total scores are converted to T-scores with a range from 32.0 to 73.3. Higher T-scores indicate a worse outcome. The population mean for T-scores is 50 with a standard deviation of 10.

This 4-item measure assesses perceived cognitive functioning in the past 7 days. Each item is rated on a 5-point scale (1=very often/several times a day to 5=never). The 4 items are summed with higher total scores indicating better cognitive functioning. The total scores are converted to T-scores with a range from 24.99 to 61.13. Higher T-scores indicate a better outcome. The population mean for T-scores is 50 with a standard deviation of 10.

Thirty-five items from the Multidimensional Psychological Flexibility Inventory are being used to assess one aspect of psychological flexibility (i.e., acceptance; 5 items) and six aspects of psychological inflexibility (i.e., experiential avoidance, cognitive fusion, lack of contact with the present moment, attachment to the conceptualized self, lack of values clarity, and inaction; 30 items total). Across items, participants rate their behavior on 6-point scales from 1=never true to 6=always true. Separate mean scores across the 5 acceptance items and the 30 psychological inflexibility items are calculated, with mean scores ranging from 1 to 6 on each. Higher mean scores reflect greater acceptance and psychological inflexibility, respectively.