Feasibility and Acceptability of Digital Legacy-Making: An Innovative Story-Telling Intervention for Adults With Cancer

Abstract

Background:

This study examined the feasibility, burden and acceptability of a legacy-making intervention in adults with cancer and preliminary effects on patient quality-of-life (QOL) measures.

Method:

We conducted a Stage IB pilot, intervention study. The intervention was a digital video legacy-making interview of adults with advanced cancer to create a digital video of their memories and experiences. Baseline and post-video QOL assessments included: Functional Assessment of Cancer Therapy—General (FACT-G), Patient Dignity Inventory (PDI), Hospital Anxiety and Depression Scale (HADS), and Emotional Thermometers for distress, anxiety, anger, help and depression. Participants received a final copy of the digital video for distribution to their families.

Results:

Adults (n = 16) ages 38-83 years old with an advanced or life-limiting cancer diagnosis completed an intervention. Feasibility and acceptability was strong with 0% attrition. While the pilot study was not powered for quantitative significance, there were changes from baseline to post-intervention in the participants’ total or subscale FACT-G scores, PDI, HADS anxiety or depression scores, and Emotional Thermometer scores.

Conclusions:

A digital video legacy-making intervention is feasible for adults with cancer without significant negative outcomes for individuals completing the study. It remains unclear whether this intervention contributes to positive quality of life outcomes.

Introduction

The diagnosis and treatment of a serious illness, such as advanced cancer, has a profound effect on the individual and family, and often evokes difficult existential questions. While survival rates for some cancers have increased in recent years due to advances in screening and medical treatments, patients with advanced cancer continue to confront arduous treatments and poor prognoses. These patients often experience severe psychological distress, which has an effect on their overall quality of life and well-being.^1,2 Feelings of depression, anxiety, and fear are common responses to this life-changing experience. While estimates vary, the prevalence of depression and anxiety among patients with advanced cancer remains high.^1,3 Patients are often fraught with psycho-emotional and existential distress as they encounter the prospect of death and consequently struggle to find meaning in their life.

Care of the physical, psycho-emotional, social, and spiritual aspects of an individual during serious illness is an essential component of patient-centered care. While significant progress has been made in controlling physical symptoms of advanced cancer, progress has been less obvious in responding to non-physical aspects of the illness. As an illness progresses, psycho-emotional and existential suffering becomes a major concern for many individuals as they near end of life. In this context, Chochinov developed Dignity Therapy, an individualized, psychotherapy, to relieve psycho-emotional and existential distress and improve the experience of patients whose life is threatened by serious illness.⁴

Chochinov’s Dignity Therapy served as the conceptual framework for this study. Dignity Therapy is an individualized psychotherapeutic approach designed to support adults living with serious illness by bringing a sense of meaning, purpose, and dignity to their lives and reducing suffering.⁵ Dignity Therapy has been shown to be of benefit to adults living with serious illness and their families. Most patients who participate in Dignity Therapy reported an increased sense of meaning, purpose, and dignity^6–8; and most family members reported that Dignity Therapy made the seriously-ill person’s life more meaningful and the document was a source of comfort during their grief.^6,7,9 In a systematic review of 28 Dignity Therapy studies, none of which were video-based, there were observed decreases in patient anxiety, improved existential and psychosocial outcomes, as well as improved end-of-life experiences.¹⁰ This study builds upon this work by laying the groundwork for adapting this intervention to a digital video platform in order to expand Dignity Therapy’s reach, and by exploring whether this adaptation preliminarily positively or negatively affects quality of life outcomes for patients.

In clinical practice there is an urgent need for evidence-based psychosocial interventions targeting patients living with advanced cancer. Legacy making interventions are an opportunity for patients to reflect upon and communicate their memories, wisdom, and life values, and can succeed the patient in death by leaving family members with a lasting memory of the person.⁴ Legacy making has been shown to increase patient’s sense of dignity, purpose, meaning, will to live, and acceptance while decreasing their suffering and distress, as well as comforting their family.^11–14 Although legacy making has contributed to positive patient and family outcomes in palliative and end-of-life care settings, potential benefits of creating a digital legacy making video on patient well-being remains under-explored.^10,12

The experience of recording oral histories in palliative care suggests that digitizing patients’ remembrances can be beneficial for their self-esteem.¹⁵ Oral history allows patients to record unique life experiences using a self-directed narrative and process that serves many purposes, including assisting in closing “unfinished business.” This suggests that there is potential benefit with creating self-directed/created digital legacy videos. The widespread availability of smartphones and tablets has the potential to increase access to the creation of digital legacy videos, and may be a beneficial intervention for adults living with advanced cancer to optimize their quality of life (QOL) and decrease suffering during serious illness. This pilot study provides the foundation needed for the design of a digital modality for improving reach and implementation. The purpose of this paper to report the feasibility, burden and acceptability of an adapted digital video legacy-making intervention in adult patients with advanced cancer.

Methods

Dignity Therapy Intervention

The primary study intervention was a semi-structured, adapted Dignity Therapy,⁹ interview with seriously ill patients. The aim of the interviews was to create legacy videos for persons with life-limiting illness that explored participants’ views about living with advanced illness, their experiences in a medical system, and to measure the impact of the video creation process on patient well-being. The videos were meant to create a legacy gift for participant families, and to create a teaching legacy that could be used to instruct current and future generations of healthcare clinicians about patient care.

The Dignity Therapy legacy interview guide was developed by an interdisciplinary team including palliative medicine physicians and a clinical health psychologist. The interview guide is based on the Dignity Therapy model¹⁶ that was chosen because of evidence that it can alleviate psychosocial and existential distress among patients with serious illness yet can also examine additional areas critical to understanding the patient experience.¹¹ The interview guide was expanded to include additional topics about the patients’ role as a patient-teacher for medical trainees while a patient in an academic medical center. Additional questions included: “What do you feel you still need to say to your doctors, nurses or other clinicians, or would like to say again?”; “What are your hopes for the next generation of clinicians caring for patients with cancer?”; “What advice or words of guidance would you wish to pass along to the next generation of doctors and clinicians?”; and “Are there words, or perhaps even instructions, you would like to offer your physician or other future physicians to help them prepare to take care of future patients?” Additional interview questions, not included in the current analysis, also elicited views on participation in research and views about advance care planning. The entire list of interview questions are shown in the Supplemental Appendix. The interview guide was pilot tested with 2 patients with serious illness, who met eligibility criteria for the pilot study. The interview guide was refined accordingly to increase understandability.

Study Procedures

Study setting and participants.

The study was conducted at a major academic medical center in New England. Interviews were conducted between July 2015 and April 2016.

Ethical Approval

The institutional review board of the University of Massachusetts Medical School reviewed and approved this study protocol.

Recruitment & Eligibility

Patients were referred for enrollment from the New England area by their oncologist or palliative medicine physician if they indicated interest and met the following eligibility criteria: 1) diagnosis of advanced cancer; 2) Eastern Cooperative Oncology Group (ECOG) performance status of 0-3 based on clinical assessment; 3) English speaking; 4) able to commit to 2-3 contacts over the study period; 5) no cognitive or severe psychiatric impairment; 6) able to give verbal and written consent; and 7) age 18 or older. Patients were excluded if their oncologist or palliative medicine physician felt that the interview was inappropriate or burdensome to the patient.

Dignity Therapy Interview and Data Collection

Written informed consent was obtained prior to each interview. Participant dignity interviews were conducted in person at the medical center by a Bachelor’s level interviewer (AD). The interviewer was a pre-medical student with hospice volunteer experience. Prior to conducting study interviews, 2 study investigators with expertise in patient interviewing, including a physician (CF) and clinical health psychologist (AW), conducted training with the interviewer that included practice interviews with 2 patient participants not included in the final study; both of these investigators provided clinical oversight of the individual interviews and were available for any emergency consultations if needed. Practice interviews were conducted to ensure questions are acceptable, answerable, understandable and comprehensive. Interview questions were refined in an iterative process, based on feedback from patient and investigator trainer and discussion with the investigative team.

All interviews were video recorded. Video recordings were edited to remove the interviewer’s voice, but otherwise left the participants’ responses intact and unedited, including responses to all interview questions. After editing, per the study protocol, digital copies of the video recordings were given to the participants to share with their family and friends.

The acceptability of conducting Dignity Therapy digital video recordings for this study was assessed using a 10-point Likert scale (1 Not at all credible/confident; 10 Very credible/confident) to assess the patient’s acceptance of the study as part of our assessment of study feasibility. Questions included: How logical does this interview seem to you?; How confident would you be in recommending this interview to a friend who was living with cancer?; If you heard about this interview opportunity that was not part of a study, would you be willing to do the interview?¹⁷ Acceptability in terms of self-reported burden on a 10-point Likert scale and the time required for each component of the study was also recorded. Finally, research staff kept brief field notes to track participant reaction to the study engagement process.

Self-reported measures of physical and psychological quality of life, as well as dignity were collected before and after each interview. These measures included: the Functional Assessment of Cancer Therapy-General scale (FACT-G)¹⁸ is a 27-item tool used to assess quality of life in cancer patient with questions divided into 4 QOL domains: physical well-being, social/family well-being, emotional well-being, and functional well-being, with sum total of all subscales resulting in a range 0-108, with higher scores indicating better quality of life; the Hospital Anxiety and Depression Scale (HADS),¹⁹ which focuses on the cognitive rather than the vegetative symptoms of depression and will be less affected by physical changes associated with cancer treatment, including separate subscales for anxiety (HADS-A) and depression (HADS-D) which each range 0-21, with higher scores indicating greater levels of anxiety or depression; an Emotional Thermometers,^20,21 5-item assessment of recent negative emotional experiences over the past week among cancer patients with subscales for distress, anxiety, anger, help and depression ranging from 0-10, higher scores indicating greater emotional stress; and the Patient Dignity Inventory,²² a 25-question survey that evaluates how well the patient is maintaining a sense of dignity while living with a life-limiting illness, with range 25-125 with higher scores indicating greater distress. We also measured study burden on a rating scale of 1-10 (1 indicating minimal burden, 5 indicating participant is getting tired, 7.5 indicating the participant continued study but could not complete certain parts, and 10 indicating being overwhelmed and stopping the study).

Data Analysis

Descriptive statistics (averages and means), along with open-ended questions, were used to evaluate feasibility, burden and acceptability. Fieldnotes were analyzed to further assess the acceptability and feasibility of the study. Descriptive statistics were used to characterize study participants, baseline and post-intervention measurement. Paired t-tests were used to compare changes in mean pre- and post-intervention outcome measurements. Analyses were conducted in STATA 16.0. (College Station, TX).

Results

A total of 16 participants completed videos and data collection. Each interview lasted an average of 71 minutes (range 36-110 minutes). The mean age of participants was 61.6 years (+ 12.0) and 44% were female. The mode ECOG score was 1. (Table 1)

Table 1.

Participant Characteristics.

	N	%
Age
< 65 years old	8	50
≥ 65 years old	8	50
Sex
Male	9	56.3
Female	7	43.7
Cancer Type
Carcinoid	1	6.3
Glioblastoma Multiforme	1	6.3
Mesothelioma	2	12.5
Metastatic Breast Cancer	4	25
Metastatic Colon Cancer	2	12.5
Metastatic Lung Cancer	1	6.3
Metastatic Melanoma	1	6.3
Metastatic Prostate Cancer	1	6.3
Multiple Myeloma	2	12.5
Pancreatic Cancer	2	12.5
Eastern Cooperative Group Score
0	3	18.8
1	10	62.5
2-3	3	18.8
Marital Status
Single	5	31.2
Married	11	68.8
Race/Ethnicity
White	15	93.7
Black/African American	1	6.3
American Indian/Alaskan Native	0	0
Asian	0	0
Native Hawaiian or Pacific Islander	0	0
Hispanic/Latino	0	0
Education
Some High School or HS Graduate	2	12.5
Some College	2	12.5
Associate’s Degree	2	12.5
Bachelor’s Degree	3	18.8
Master’s Degree	4	25
Doctorate	3	18.8
Religious Affiliation
Catholic	8	50
Jewish	2	12.5
Protestant	4	25
N/A	2	12.5

Burden and Acceptability

Total average time for completion of study elements was < 25 minutes. Time and reported burden for the completion of demographic information, study confirmation, and QOL measurements averaged 13.3 minutes, and consent and HIPAA disclosures averaged 11.43 minutes (Table 2) The mean rating of burden for each component of the study (consent; data collection (demographics; self-reported measure of physical and psychological quality of life; video interview) showed a low mean burden of the study of 1.5 out of 10.

Table 2.

Time and Reported Burden of Study Elements.

Study Task	Time (minutes) Mean (SE)	Rate Burden (1-10/10 worst)
Consent & Authorization to Disclose (HIPAA)	11.43 (1.97)	1.4 (0.15)
Demographic Info and ECOG	2.8 (0.58)	1.4 (0.18)
FACT-G	3.6 (0.26)	1.56 (0.18)
HADS	3.1 (0.46)	1.76 (0.19)
Patient Dignity Inventory	3.8 (0.49)	1.94 (0.21)
Overall Acceptability	n/a	1.5 (0.18)

ECOG = Eastern Cooperative Oncology Group Score; FACT-G = Functional Assessment of Cancer Therapy—General scale; HADS = Hospital Anxiety and Depression Scale.

The scores for the acceptability measures was high. The mean score was 9.0 (standard error [SE] 0.44) for “How confident would you be in recommending this interview to a friend who was living with cancer?” and the mean was 8.5 (SE .64) for “If you heard about this interview opportunity that was not part of a study, would you be willing to do the interview?” In addition, interviewer fieldnotes revealed that participants reported that they “really enjoyed the experience,” and “it had helped them process” their cancer experience. Participants also reported a strong desire to help others by sharing their story.

Quality of Life Measures

Mean baseline scores for QOL measures were FACT-G 79.7, Patient Dignity Inventory Score 39.6, and HADS-Anxiety 13.0 and HADS-Depression 10.7, without statistically significant change post-intervention. (Table 3) The mean baseline emotional thermometer scores across all participants were as follows: distress 2.1, anxiety 2.8, depression 2.6, anger 2.2, and helplessness 1.8. There was no significant change for emotional thermometer scores except for a decrease in depression by 1.4 post-intervention (p = 0.02).

Table 3.

Pre- and Post- Intervention Quality of Life Measures.

Measure (range)	Pre-Score Mean (SD)	Post-Score Mean (SD)	P value
Functional Assessment of Cancer
Therapy-General scale (FACT-G)
Physical Well-Being (0-28)	20.1 (6.0)	20.4 (4.6)	0.71
Social/Family Well-Being (0-28)	22.3 (6.7)	21.9 (6.2)	0.66
Emotional Well-Being (0-28)	17.3 (5.2)	17.9 (3.4)	0.46
Functional Well-Being (0-28)	20.0 (5.2)	19.7 (4.9)	0.67
FACT-G Total Score (0-108)	79.7 (19.8)	80.0 (16.2)	0.88
Hospital Anxiety and Depression Scale
Anxiety Score (0-21)	13.0 (4.4)	12.6 (4.0)	0.42
Depression Score (0-21)	10.7 (2.7)	11.2 (3.0)	0.20
Patient Dignity Inventory
Total Score (25-125)	39.6 (14.6)	39.8 (12.5)	0.87
Emotional Thermometer
Distress (0-10)	2.1 (2.9)	1.9 (1.9)	0.57
Anxiety (0-10)	2.8 (3.4)	2.2 (2.2)	0.27
Depression (0-10)	2.6 (3.5)	1.4 (1.9)	0.02
Anger (0-10)	2.2 (3.1)	2.6 (3.1)	0.42
Help (0-10)	1.8 (2.5)	1.9 (2.3)	0.78

Discussion

The aim of this Stage 1B pilot study was to explore the feasibility, burden and acceptability of offering and conducting a digital video-adaptation of a Dignity Therapy intervention with persons living with advanced cancer and not at the impending end of life, as well as obtain preliminary effects on selected patient QOL measures. The results of this pilot study indicate that our legacy-building intervention was both feasible and acceptable within an outpatient setting and across various types of cancer. Participants had a positive experience with the Dignity Therapy interview and the legacy projects created, as well as being a means to process their cancer experience and help others. Minimal study burden was reported, and the majority of participants would recommend Dignity Therapy to a friend living with cancer and would be willing to participate in a Dignity Therapy interview as part of their clinical care.

As this Stage 1B pilot study was designed to assess the feasibility and acceptability of a legacy-building intervention, it was not powered to show changes in QOL outcomes. However, it remains important to view the QOL outcomes within the context in which they occurred. Despite having various forms of advanced cancer, all participants in this study had low ECOG scores, indicating they had high functional levels and self-care capability. Participants were also only moderately anxious and depressed on HADS at baseline and with the exception of the depression scores on the Distress Thermometer, remained moderately anxious and depressed post-intervention. The pre-post design allowed for measurement QOL outcomes and demonstration of no changes, adverse or otherwise, from participating in the study and digital legacy intervention. The only statistical difference was a slight improvement in depressive affect scores on the Distress Thermometer scale, but there was no improvement in depression scores on the HADS depression subscale.

While this study offers support for digital legacy as a promising intervention for individuals and families living with diverse forms of advanced cancer, it does have some limitations. This pilot study included a small sample from 1 institution with an overrepresentation of highly functional and self-care capable, white and married individuals. There was however, an equal distribution of males and females. Further investigation with a larger, more diverse sample is needed to gain a greater understanding of the effects of a Dignity Therapy guided digital legacy on individuals with advanced cancer and family QOL outcomes.

In sum, a pilot study on the feasibility and acceptability of a digital legacy intervention from a clinical perspective was conducted with advanced cancer patients, as a precursor to larger, randomized controlled trial. Digital legacy was both feasible with and acceptable to individuals living with advanced cancer receiving care in the outpatient setting. The results of this pilot study provide support for the intervention and serves as a foundation for the design of a guided, on-line digital legacy. The future direction of this work is to move this intervention to a self-directed, on-line format that can increase accessibility by allowing individuals to complete the digital legacy within the privacy of their own home and at their own pace. This is particularly relevant in the current pandemic era where in-person contact is limited, and infection control protocols may contribute to patients dying alone in the acute care setting. A Dignity Therapy guided online digital legacy will provide the individuals with the personal space and time to reflect upon, find meaning in, and leave a lasting legacy of their life, as well as improve their QOL.