“Made Me Realize That Life Is Worth Living”: A Qualitative Study of Patient Perceptions of a Primary Palliative Care Intervention

Abstract

Background: Primary palliative care is needed to meet the complex needs of patients with serious illness and their families. However, patient perceptions of primary palliative care are not well understood and can inform subsequent primary palliative care interventions and implementation.

Objective: Elicit the patient perspective on a primary palliative care intervention, Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA), from patient perspectives.

Design: Qualitative study using patient interviews and two methods of triangulation.

Setting/Subjects: Between July 2014 and September 2015, we interviewed 45 patients who participated in the intervention in a Veterans Affairs (VA) (primary site), academic, and urban safety-net health system in the United States.

Main Measures: Participants were asked about what was most and least helpful, how the intervention affected participants' lives, and what should be changed about the intervention. Data were analyzed using a general inductive approach. To enhance validity of the results, we triangulated the findings from patient interviews, reviews of care coordinator documentation, and interprofessional palliative care providers.

Results: The six themes identified that primary care intervention: (1) Cared for My Psychosocial Needs, (2) Encouraged Self-Management, (3) Medication Recommendations Worked, (4) Facilitated Goal Attainment, (5) Team was Beneficial, and (6) Good Visit Timing.

Conclusions: Participants experienced benefits from the primary palliative care intervention and attributed these benefits to individualized assessment and support, facilitation of skill building and self-management, and oversight from an interprofessional care team. Future primary palliative care interventions may benefit from targeting these specific patient-valued processes.

Introduction

Although the availability of specialty palliative care is increasing, it is primarily limited to inpatient settings, creating access barriers particularly in the outpatient setting.¹ With program and workforce shortages, specialty palliative care is a limited resource that will not grow fast enough to meet the care demands of an expanding seriously ill population.^2,3 Therefore, new care models are necessary to expand the reach of palliative care and address the needs of growing numbers of patients with serious illness and their families.^4,5 Primary palliative care, the provision of basic palliative care services by nonpalliative care specialists such as family medicine and internal medicine,⁴ can address palliative care needs of seriously ill patients who do not have access to specialty care or can serve as a bridge until specialty care becomes available.

There is developing evidence connecting primary palliative care with specific health outcomes⁶ and researchers and providers call for the expansion of primary palliative care training and services across several health conditions including heart failure, chronic obstructive pulmonary disease, and cancer.^7–10 There are also several clinical trials underway testing the association between primary palliative care interventions with outcomes including quality-of-life, symptoms, mood, caregiver burden, health care utilization, and location of death.^11–13

While primary care providers identify the importance of the interprofessional team and high-quality communication for primary palliative care,¹⁴ patient and provider perceptions of primary palliative care interventions are not well understood. Based on a national survey and qualitative studies with providers, approximately one-third of family physicians report providing palliative care, and primary care providers report palliative care needs in their patients.^15,16 However, primary care practitioners report time constraints, system bureaucracy, and skill confidence as common barriers to optimal primary palliative care.¹⁷ Considering that ∼8% of primary care visits among older adults in the United States are related to advanced serious illness,¹⁸ there is a need to develop evidence-based primary palliative care interventions.

The Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) (clinicaltrials.gov NCT01739686) trial studied the effect of a primary palliative care intervention on heart failure-specific health status and other quality-of-life outcomes and also evaluated perceptions of participating in the intervention.¹⁹ Based on a collaborative care model of health delivery,²⁰ CASA was a patient-centered primary palliative care intervention targeting symptoms and depression among patients with chronic heart failure and poor health status. CASA was designed to address national calls for heart failure-specific palliative care interventions.^21,22 The collaborative care team met weekly and included a primary care physician, registered nurse, social worker, cardiologist, and palliative care physician. The registered nurse provided algorithm-guided symptom management focused on breathlessness, fatigue, pain, and depression, and the social worker provided phone-based structured psychosocial care targeting depression and adjustment to illness. Advance care planning was not part of CASA. Results from the randomized control trial indicate depression and fatigue improved among patients who participated in CASA.²³

As part of the CASA trial, we planned an evaluation to (1) elicit the patient perspective on CASA, and (2) identify barriers and facilitators to the implementation and sustainability of the intervention. Understanding patient perspectives on primary palliative care interventions can provide insights into the mechanisms of benefit and inform subsequent strategies for future interventions and models of care.

Materials and Methods

This qualitative study was a preplanned aim of a multisite randomized clinical trial (RCT) of CASA.¹⁹ The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist is included in Appendix A1. This study was approved by the Colorado Multiple Institutional Review Board (COMIRB).

Setting and participants

Participants were eligible for this study if they were enrolled in the intervention arm of the CASA trial. During informed consent for the CASA trial, participants were aware they could participate in an optional interview after six months of study participation if they were randomized to the intervention arm. Participants were enrolled into the trial from three health systems in Colorado (urban safety net, Veterans Affairs, and academically affiliated). Patients with chronic heart failure were identified through study sites' electronic health records. The diagnosis was defined using administrative data supplemented with diuretic dosing (furosemide ≥20 mg/day or equivalent), left ventricular ejection fraction ≤40%, or brain natriuretic peptide (BNP) levels ≥250 pg/mL or NT-proBNP ≥1000 pg/mL. During the study screening process, patients who reported reduced heart failure-specific health status (Kansas City Cardiomyopathy Questionnaire Short Version (KCCQ-12) score of ≤70) and were bothered by at least one of the study's target symptoms (fatigue, shortness of breath, pain. and/or depression) were targeted for enrollment. Patients with active substance abuse or serious mental illness were excluded.

Data collection

Interviews

All participants who completed the six-month outcome measures were offered participation in the interview. The interview guide (Appendix A2) was developed and piloted in the CASA pilot study²⁴ by a palliative care physician researcher (D.B.), nurse, social worker, psychologist, and qualitative methodologist. The interview guide was subsequently revised for the CASA multisite RCT. The interview guide included open-ended questions about processes and content of the intervention. A qualitative research assistant, trained by the study qualitative methodologist conducted interviews. Interviews were conducted by phone, audiotaped, and transcribed.

Triangulation resources

Data from the trial were used for triangulation from intervention close-out summaries, written for each intervention participant by the intervention nurse and social worker, and interviews with primary care physicians. The close-out summaries, written when each participant completed (N = 124) the intervention, described what about the intervention worked and did not work, and characteristics of the participant, intervention, and health care system that facilitated and inhibited intervention success. Interviews were offered to primary care physicians who had patients in the intervention arm of the study. Primary care physicians (N = 4) were asked about their experience with the CASA intervention, what they heard from their patients about CASA, and what recommendations they had to improve the CASA intervention.

Data analysis

Data were analyzed after data collection was completed. Data were managed in ATLAS-Ti, and we conducted a conventional content analysis.²⁵ One analyst coded the first five patient interview transcripts and then reviewed the codebook and transcripts with a second analyst. The two analysts revised the codebook and jointly recoded the 5 transcripts, then separately coded additional transcripts until there was 100% accuracy with joint coding (n = 10 additional transcripts). One analyst coded an additional 10 transcripts, which were reviewed by the second analyst with coding unchanged. The first analyst then coded the remaining transcripts. Content codes were grouped and compared to develop broader themes around participant reactions to the intervention. Themes were then organized using an evaluation approach²⁶ to specifically describe both positive and negative perspectives for each theme. Frequency coding²⁶ was used to demonstrate the rate at which positive and negative statements were identified within each theme. Frequency coding should not interpret higher frequency codes as more relevant or important to those with lower frequency, but rather used to explore pattens across a category. Frequency coding is particularly well-suited to see patterns in the presence and direction of evaluative content.^26,27 To promote analytic rigor, the emerging results were reviewed regularly with the broader research team. An audit trail describing the analytic process was maintained.

Three sources of data were used to triangulate the findings from the patient interviews. First, using a similar team-based analysis, we reviewed nurse- and social worker-completed summaries of how the intervention benefitted or did not benefit each patient. Second, primary care physicians (n = 4) provided their perspectives on the usefulness of the CASA intervention. Third, the results were discussed during a formal presentation with interprofessional palliative care providers.

While our sample size was not determined by a process of achieving saturation, we invited all intervention participants to share their experience via an interview. Our confidence in establishing saturation is based on several factors including a sample size consistent with qualitative inquiries regarding palliative care interventions²⁸ and inclusion of multiple analytic perspectives, for example, triangulation of transcript data with close out summaries and primary care physician (PCP) feedback, to identify “new” concepts.²⁹

Results

Participants

Of 158 participants randomized to the intervention, 124 completed 6-month follow-up measures, and 45/124 participated in the interview. Interview participants were 67.1 ± 9.7 years of age and primarily White and male (Table 1). Interview participants were mostly retired, 68.8% with at a least some college education, and 66.7% having an annual income of < $40,000. Hypertension, diabetes, and obstructive sleep apnea were common medical comorbidities, and 62.2% had New York Heart Association Class 3–4. Participants had reduced heart failure-specific health status and symptoms of depression and anxiety. When compared the only statistically significant difference between interview participants and nonparticipants was that interview participants were less likely to have seriously reduced (<30%) left ventricular ejection fraction (LVEF) (p = 0.04). Interview participation did not significantly differ across trial study site.

Table 1.

Characteristics of Participants

Characteristic	Qualitative interview (n = 45)
Demographic, n (%)
Age, years, mean (SD)	67.1 (9.7)
Men	37 (82.2)
White race	33 (73.3)
Employment status
Retired	25 (55.6)
Disabled	11 (24.4)
Employed	4 (8.9)
Educational level
Less than high school graduate	0 (0.0)
High school graduate or GED	11 (24.4)
Some college	20 (44.4)
College graduate	10 (22.2)
Any postgraduate education	4 (8.9)
Income
Less than or equal to $20,000	16 (35.6)
$20,001 to $40,000	14 (31.1)
$40,001 to $60,000	7 (15.6)
More than $60,000	8 (17.8)
Medical history, n (%)
Hypertension	38 (84.4)
Diabetes	28 (62.2)
Obstructive sleep apnea	24 (53.3)
Atrial fibrillation or atrial flutter	16 (35.6)
Myocardial infarction	15 (33.3)
Chronic obstructive pulmonary disease	18 (40.0)
Depression	12 (26.7)
Percutaneous coronary intervention	10 (22.2)
Coronary artery bypass graft	10 (22.2)
Heart failure characteristics, n (%)
Ischemic etiology	16 (35.6)
Left ventricular ejection fractiona
Normal	22 (48.9)
Mildly reduced	10 (22.2)
Moderately reduced	5 (11.1)
Severely reduced	5 (11.1)
New York Heart Association Class
1	1 (2.2)
2	16 (35.6)
3	22 (48.9)
4	6 (13.3)
Health status, depression, and anxiety
KCCQ score, mean (SD)b	51.0 (17.1)
PHQ-9 score, mean (SD)c	8.5 (5.3)
GAD-7 score, mean (SD)d	4.6 (4.4)

^a Left ventricular ejection fraction was available for 42 qualitative interview patients. Normal, ≥50%; mildly reduced, 40%–49%; moderately reduced, 30%–39%; severely reduced, <30%.

^b The KCCQ overall summary score range is from 0 to 100; higher numbers indicate better health status.

^c Depression was measured using the PHQ-9; a score of 10 or higher is considered a positive screening result for depression.

^d Anxiety was measured using the Generalized Anxiety Disorder Questionnaire-7; a score of 10 or higher is considered a positive screening result for anxiety.

GAD-7, Generalized Anxiety Disorder-9 Questionnaire; GED, General Educational Diploma; KCCQ, Kansas City Cardiomyopathy Questionnaire; PHQ-9, 9-item Patient Health Questionnaire; SD, standard deviation.

Valuable core intervention content

Six major themes were identified that captured the valuable core intervention content and processes: (1) CASA Cared for My Psychosocial Needs, (2) CASA Encouraged Self-Management, (3) CASA Medication Recommendations Worked, (4) CASA Facilitated Goal Attainment, (5) CASA Team was Beneficial, and (6) Good Visit Timing. Exemplary quotations from participants for each identified theme and the frequencies of both positive and negative statements are presented in Table 2. Statements made about these content areas were most commonly positive, with only a few negative (or neutral) experiences. Across all themes, participants highlighted the helpfulness of addressing personalized health-related concerns, including how the intervention helped them identify concerns (ranging from physical symptoms, depression, family issues, and communication) and then provided recommendations for addressing their individualized concern.

Table 2.

Summary of Quotations from Collaborative Care to Alleviate Symptoms and Adjust to Illness Participants

Positive statements	Negative or neutral statements with recommendations for improvement
CASA cared for psychosocial needs
Frequency: 48 “It did a tremendous job of bringing me out of the doldrums. That's what the program did for me. it brought me 75–80% back to normal” Participant 19 “They gave me lots of ideas on how to talk to my family about it. The most recent (example) is my husband started working for a new company and he is getting up at like four o'clock in the morning. I used to get up with him when he would get up for work, and we would get up at 6, and that wasn't too bad, but getting up at 4 o'clock in the morning was just killing me. I couldn't do it. The social worker helped me word, give me words, I don't know how to say it, to explain to my husband what it was doing to me, and that I needed to sleep in, and he has let me sleep in every day (which has helped my energy levels a lot throughout the day).” Participant 33 “I think you made me realize that life is worth living and I want to do anything that I have to do to continue you know it's uh I can see the benefits of what's been said and if I continue to do it I might add some time to my lifespan.” Participant 13	Frequency: 1 “I guess the discussions with the social workers about any signs of depression or mood swings because I really haven't had a problem with that. I mean somewhat I do, because I feel so much more limited than before. And any mood change or depression that I was incurring I don't think was because of my heart attack.” Participant 44
CASA encouraged self-management
Frequency: 53 “I check my weight- you guys sent me a scale, and I'm still trying to get out as far as doing stuff healthy- walk my dog, do stuff that is healthy and get some fresh air.” Participant 27 “Kinda helped me figure out how to take care of my health more. Gave ideas on what to do and when.” Participant 2 “Knowing who you are, what your body is telling you and being able to express that and speak with friends or other family members who may be having problems and don't know how to cope.” Participant 43	Frequency: 0
CASA medication recommendations worked
Frequency: 34 “Well they made sure I was, when they adjusted my medication it made a great deal to me, they cut some of it down.” Participant 30	Frequency: 5 “They helped me a little bit with the medications and suggestions and some of them were successful and some of them weren't. Like for instance I tried that lyrica and it was not good for me…” Participant 15
CASA facilitated goal attainment
Frequency: 32  “I came out of the program feeling a little more comfortable and a little bit more motivated recognizing that it's not the end of the world and that I can keep on going so they motivated me and sometimes it was either one of them…you know just to go do things, to walk more, to just go further like getting more exercise and setting huge goals and setting secondary goals.”  Participant 6	Frequency: 9 “Nothing to think of… walking didn't work. I still can't walk more than 1/2 block. I tried the stationary bike but that didn't work either.” Participant 5
CASA team was beneficial
Frequency: 6 “Well I think all the parts where the doctors, the social worker part of it, you know the medical side of it and everything else…they were all engaged and interested in my well-being both medically, emotionally…and if there were any areas that seemed to be a red flag or something then they would want to address that so or see if there was any indication of any problems in those areas and if so they would have the tools to do that.” Participant 45 “It had a great impact on my life. I had the nurse and SW, and they were calling and being concerned, so it had a big impact on my life… They were concerned on how I was feeling and stuff, what they can do for me to make my life better, with all that concern it made me feel good, I'm by myself so I don't have anybody looking after me.” Participant 23	Frequency: 4 “You guys recommended an annual check on clogged arteries on my neck, but you don't have power to set it up.” Participant 19
Good visit timing
Frequency: 15 “Frequency of calls was good.” Participant 7 “Did not call too much. sometimes would call when not home or going outdoor, but would call back another time.” Participant 2	Frequency: 19 “Just a little more contact with doctors and nurses, and I guess more time talking to them to, more often. It's hard to get ahold of me, like when I was in TX for 6 months, but they worked with me on the study.” Participant 18 “I wish it would have lasted a little longer, it seemed to me that time went by really fast.” Participant 23

CASA, Collaborative Care to Alleviate Symptoms and Adjust to Illness.

Participants shared their overall experience with CASA. The majority of participants perceived benefit from CASA and attributed this to individualized support, skill-building, and being cared for by an interprofessional team. Many participants stated they were disappointed when the intervention ended. While not expressed by all participants, the majority of participant statements focused on how the intervention led to improvements in overall health and depression. Participants with neutral experiences simply did not see a change in their health, felt the intervention did not pertain to them, or thought the expectations of the intervention were not clearly articulated.

CASA cared for my psychosocial needs

Many participants highlighted the value of the psychosocial aspects of the intervention. Participants explained the interventionists were able to assess psychosocial concerns, often related to interpersonal communication, and provide specific techniques to address identified needs. The psychosocial support was seen as a mechanism for learning to cope with illness and manage emotional changes. Participants described specific examples in which the intervention used therapeutic approaches, including depression treatment and relaxation techniques, to improve mood and communication skills. Participants emphasized that psychosocial aspects of CASA made them feel like the health care team cared about them.

CASA encouraged self-management

Participants explained that CASA offered education regarding good practices for self-management. Participants stated that the education targeted a variety of physiological and psychological aspects of care while being individualized to the participant. This education in turn made participants feel more aware of their health and their symptoms; provided tips for monitoring and navigating the health care system; and included recommendations for addressing health concerns as they arose or changed during the course of the intervention. Participants also felt more encouraged to engage in healthy activities particularly related to walking and nutritious eating.

CASA medication recommendations worked

Among the participants who were provided medication recommendations by the CASA team, the majority described the changes as being beneficial. Participants noted that medication recommendations targeted pain, sleep, depression, and breathing, and in several cases participant medications were adjusted to reduce the number of overall medications. Participants felt these changes improved their targeted concern while feeling better about “how many pills” they were taking.

CASA facilitated goal attainment

Quotes related to healthy goal setting and attainment primarily related to increasing physical activity. Participants expressed that CASA helped them achieve their goals and they felt more confident to get out, walk more, and become more active. A few participants documented that they were unable to accomplish their goals due to functional impairments related to breathing difficulties and pain.

CASA team was beneficial

Participants appreciated the interprofessional nature of the CASA intervention. The team dynamic well-positioned the providers to address symptoms and psychosocial concerns. The participants also trusted that the team could assess and treat a variety of needs. However, some participants noted that the team did not have the ability to influence care outside of the intervention. For example, the CASA team would provide a referral or recommendation, but sometimes other providers would not follow-up.

CASA had good visit timing

A total of 34 quotes about the timing of CASA visits were identified and ranged from suggesting less visits to recommending more visits and increased time with the providers. Many participants felt the call and visit timing was perfect, while others wanted more time and more in-person visits.

Triangulation of themes

The identified themes aligned with the nurse and social worker summaries and primary care physician feedback. Close out summary findings corresponded with two identified themes: CASA Encouraged Self-Management and CASA Medication Recommendations Worked. For example, the close-out summaries specified that goal setting worked for the majority of participants who completed the trial, and many engaged in new health care navigation skills. The nurse and social worker perceived that medication recommendations helped to improve symptoms in 26% of the 124 participants who completed the trial. Primary care physicians noted CASA was helpful to their patients, corresponding with the theme: CASA Intervention Helped Me. Physicians stated they appreciated the help and expressed the additional health education and attention from CASA resulted in general benefits for their patients. There were no conflicts identified across the patient interviews, close-out summaries, and physician feedback.

Discussion

This qualitative study of participants' experiences in the CASA intervention contributes to the growing literature of patient-perceived value and beneficial content of primary palliative care interventions. CASA participants identified valued components of this primary palliative care intervention including psychosocial care, identifying personalized health-related concerns, using self-management skills, and benefiting from a team (nurse, social worker, physician).

With serious illness, patients experience multidimensional, complex biopsychosocial concerns that can be challenging for patients to recognize and manage.³⁰ Primarily palliative care interventions can help health care clinicians assess multiple concerns, prioritize concerns based on patient values, and offer skill-building education to facilitate self-management and health-related goal attainment. Participants expressed that by achieving health-related goals and self-managing, the CASA intervention helped them overall. Our findings suggest that participants experienced benefits from CASA in that it facilitated individual coping skills while addressing symptoms and psychosocial concerns. These findings are similar to other studies of primary palliative care that identified improved problem-solving skills, empowerment, and coping skills as important outcomes to participants.²⁸ Our findings are consistent with the American Geriatrics Society's Expert Panel Definition of Person-Centered Care for Older Adults.³¹ The panel also emphasized individualized goal-oriented care and monitoring of these goals, team based care, quality checks with patient and caregiver feedback, and education for providers. Simply stated, primary palliative care interventions such as CASA are valued by older adults with complex health care needs because they are person-centered. Our finding also speak to the Institute for Healthcare Improvement's Age-Friendly recommendations for appropriate medication prescribing and aligning care with “what matters” to older adults and their family caregivers.³²

Similar to previous qualitative evaluations of primary palliative care interventions, participants primarily reported the positive benefits of participation.²⁸ In our study, the few participants who expressed little to no benefit from CASA indicated that the objectives of the intervention were unclear, they were unable to achieve their health-related goals, or the medication changes were not helpful for improving symptoms. These perceived challenges to the intervention could potentially be addressed by a greater focus on eliciting and discussing individuals' understanding and expectations. Patients may have specific perceptions and expectations when new health care providers become involved in their care, or even of a new program such as primary palliative care. Assessing understanding and hopes/expectations of illness is a core component of palliative care. Our data underscore the importance of expanding this discussion to include the program or team itself.

Participants felt CASA improved the usefulness of their medications and their ability to navigate the health system. Symptom management with medications and care coordination have been identified as key components of primary palliative care for patients with heart failure with referral to specialty palliative care when symptoms persist or medical management becomes too complex.⁹ Using medications that do not interfere with patient function is also highlighted by the IHI Age-Friendly framework. Consultation with a palliative care specialist or pharmacist to review prescriptions may be particularly helpful for supporting primary palliative care in maximizing efficacy of medications.³³ Medication reviews by a palliative care specialist has been found helpful by primary care providers in European care systems.³⁴ Without complex medical or social needs, care coordination can also be managed by primary palliative care with effective communication across providers caring for the patient and referrals for straightforward needs.⁹

Participants also praised the ability of the interprofessional team to address the variety of concerns patients experienced. Participants felt confident the team could help them regardless of the type of symptom or concern they were experiencing. Previous research also suggests interprofessional teams improve symptom identification and treatment,³⁵ while enhancing psychosocial and spiritual care.³⁶ Leveraging interprofessional teams in primary or specialty care may help to improve primary palliative care. For example, chaplain consultation can improve providers' ability to assess and treat spiritual concerns³⁷; while the presence of social work and nursing leads to improved communication.¹⁴ Occupational and physical therapists have suggested these professions are particularly helpful in helping patients maintain value-based function and address physical safety concerns.^38,39 Interprofessional teams also help to support the resilience and self-care of providers working with seriously ill patients.⁴⁰

While only a subset of CASA intervention participants were interviewed, the generally positive perceptions of the CASA intervention raise the possibility that benefits may have occurred that were not measured in the RCT.²³ For example, participants identified improvements in well-being, new ways to think about illness, and changes in self-management. Alternatively, there may have been improvements in processes of care (e.g., medication adjustments, self-management) that do not translate into changes in patient-reported quality-of-life or hospitalization outcomes.

Although this study provides patient-identified benefits of primary palliative care, there are limitations to this work. Experiences were only provided by CASA participants and cannot be generalized to other study populations. We received feedback only from participants willing to complete an interview that excludes the opinions of individuals who declined the interview. While reported baseline characteristics of nonparticipants did not significantly differ from interview participants, we did not test for differences by site or engagement with the intervention. In addition, we might expect interview participants had a more positive view of the intervention. However, we documented neutral or negative comments suggesting that the sample may not be as positively biased as one might assume. Our sample also lacked diversity in gender, race, and ethnicity. Further research will help identify patient perceived burden and unaddressed needs in primary palliative care.

Conclusions

In conclusion, participants reported benefits from the CASA intervention and attributed these benefits to individualized assessment and support, psychosocial care, multidisciplinary and individualized medication review, facilitation of skill building and self-management, and the interprofessional care team. Future primary palliative care interventions may benefit from targeting these specific patient-valued processes.

Appendix A2. Interview Guide

Thank you for completing the surveys. We would like to ask you for your feedback about your experience: about your interactions with the nurse and social worker, about the materials we provided, about whether and how the program has affected your life.

If you could choose one thing, what would you say was most helpful about the program? Can you tell me how it was helpful? Could you share an example?

And now, what was least helpful about the program and why? Could you share an example?

Is there anything that you worked on during the program that you are still doing?

Some people thought the program affected their life in some way; others didn't think so. How about you?

Appendix A1. COREQ 32.

-Item Checklist

Consolidated criteria for reporting qualitative studies (COREQ): 32-item checklist
No. of item	Topic	Guide questions/Description	Description	Page No.
Domain 1: research team and reflexivity
Personal characteristics
1	Interview/facilitator	Which author/s conducted the interview or focus group?	The interviews were conducted by trained qualitative research assistants, supervised by author David Bekelman	5
2	Credentials	What were the researcher's credentials? e.g., PhD, MD	MD, MPH.	5
3	Occupation	What was their occupation at the time of the study?	Associate Professor of Medicine. Clinical Researcher.
4	Gender	Was the researcher male or female?	Dr. Bekelman is male, the qualitative research assistant is female.
5	Experience and training	What experience or training did the researcher have?	Dr. Bekelman has conducted a number of qualitative studies, including obtaining funding, conducting the research, and publishing results.
Relationship with participants
6	Relationship established	Was a relationship established before study commencement?	No
7	Participant knowledge of interviewer	What did the participants know about the researcher? e.g., personal goals, reasons for doing the research	Objectives of interview clearly articulated in recruitment and informed consent process.	3
8	Interviewer characteristics	What characteristics were reported about the inter viewer/facilitator? e.g., Bias, assumptions, reasons, and interests in the research topic	The interviewer explained her background to participants as a qualitative research assistant. She said that while she worked with many people with chronic illnesses, she was interested in hearing each participant's unique perspective. During team analysis, the study team acknowledged their biases around hoping for a positive outcome from the CASA intervention. At the same time, the study team wanted to know from participants how to improve the CASA intervention.
Domain 2: study design
Theoretical framework
9	Methodological orientation and theory	What methodological orientation was stated to underpin the study?	Descriptive qualitative.	3
10	Sampling	How were participants selected? e.g., purposive, convenience, consecutive, snowball	All CASA intervention participants were invited to participate.	4
11	Method of approach	How were participants approached? e.g., face-to-face, telephone, mail, e-mail	Telephone.	4
12	Sample size	How many participants were in the study?	45 of the 124 intervention participants completed an interview.	4
13	Nonparticipation	How many people refused to participate or dropped out? Reasons?	Once participants agreed to the interview, none dropped out.
Setting
14	Setting of data collection	Where was the data collected? e.g., home, clinic, workplace	Phone	4
15	Presence of nonparticipants	Was anyone else present besides the participants and researchers?	Only interviewer and participant were present	4
16	Description of sample	What are the important characteristics of the sample? e.g., demographic data, date	Patients with advanced heart failure and depressive symptoms. Characteristics reported in Table 1.	Table 1
Data collection
17	Interview guide	Were questions, prompts, guides provided by the authors? Was it pilot tested?	Semi-structured, open-ended Developed and reviewed by research team for the CASA pilot study.A1 The study team included a nurse, qualitative methodologist, social worker, and palliative care physician researcher. Revised based on use during the CASA pilot study.	Appendix
18	Repeat interviews	Were repeat interviews carried out? If yes, how many?	No
19	Audio/visual recording	Did the research use audio or visual recording to collect the data?	Audio recorded.	4
20	Field notes	Were field notes made during and/or after the interview or focus group?	No
21	Duration	What was the duration of the inter views or focus group?	The interviews were generally 20–30 minutes.	4
22	Data saturation	Was data saturation discussed?	Saturation discussed.	5
23	Transcripts returned	Were transcripts returned to participants for comment	No
Domain 3: analysis and findings
Data analysis
24	No. of data coders	How many data coders coded the data?	Two (double coded)	5
25	Description of coding tree	Did authors provide a description of the coding tree?	Coding process and rationale provided	5
26	Derivation of themes	Were themes identified in advance or derived from the data?	Codebook established after independently coding transcripts. Reach thematic saturation through iterative approach.	5
27	Software	Qualitative software used?	Atlas.Ti	5
28	Participant Checking	Did participants provide feedback on the findings?	No
Reporting
29	Quotations presented	Were participant quotations presented to illustrate the themes/findings? Was each quotation identified? e.g., participant number	Diverse illustration of quote from participants	Table 2
30	Data and findings consistent	Was there consistency between the data presented and the findings?	Triangulation, iterative review process, consensus reaching activities	5
31	Clarity of major themes	Were major themes clearly presented in the findings?	(1) Cared for my psychosocial needs, (2) Encouraged Self-management, (3) Medication recommendations worked, (4) Facilitated goal attainment, (5) team was beneficial, and (6) Good visit timing	Table 2
32	Clarity of minor themes	Is there a description of diverse cases or discussion of minor themes?	Discuss patterns of disagreement across positive and negative statements and recommendations for intervention improvement.	5

CASA, Collaborative Care to Alleviate Symptoms and Adjust to Illness.

If you could change one thing to improve the program, what would it be?

What other advice would you give us to make the program better?

Is there anything else you'd like to say about the program?

Thank you so much for taking the time to talk with me today. We appreciate your feedback to help us improve this program in the future.

Authors' Contributions

CASA intervention trial designed and led by D.B.B. Qualitative thematic analysis operationalized by J.D.P. and B.A.G. Article drafted by J.D.P. and extensively revised by B.A.G. and D.B.B.

Funding Information

The CASA trial was funded by the National Institute of Nursing Research [NIH R01-013422] and NIH/NCATS Colorado CTSA [UL1 TR001082]. Dr. Portz is supported by a National Institute on Aging career development award (K76AG059934). Dr. Bekelman is funded by VA HSR&D.

Author Disclosure Statement

The authors have no financial conflicts to report. The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the National Institutes of Health, the Department of Veterans Affairs, or the United States government.